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Improving the life chances ofdisabled people

Final ReportJanuary 2005

A joint report with:

Department for Work and PensionsDepartment of HealthDepartment for Education and SkillsOffice of the Deputy Prime Minister

Prime Minister’s Strategy Unit

2 IMPROVING THE LIFE CHANCES OF DISABLED PEOPLE

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This report is joint with the following departments:


Contents

Page No

Foreword by the Prime Minister 5

Executive summary 7

1. Introduction 21

2. The current situation and its causes 33

3. Vision and strategy 53

4. Independent living 69

5. Early years and family support 101

6. Transition to adulthood 125

7. Employment 155

8. Towards improved delivery 195

9 Implementation 217

Annex A The role of the Strategy Unit 235

Annex B Project team, Sponsor Minister, Advisory Group and Expert Groups 237

Annex C Bilateral discussions and an overview of the consultation processes 241

The following annexes can be found on the Strategy Unit website(www.strategy.gov.uk):

Annex D A review of focus group consultations

Annex E A review of the main messages from responses to the analytical report

Annex F The results of a literature review of the specific issues faced by disabled people with the most complex needs

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Getting a job or education,travelling between home and work, going for a drink or to thecinema with friends are activitiesmost of us take for granted. But fortoo many disabled people these ordinary aspects of life remaindifficult to achieve.

That is why I asked the Strategy Unit to look at what more we cando to improve disabled people’sopportunities, to improve theirquality of life and strengthen oursociety. Despite considerableprogress, disabled people are stillexperiencing disadvantage anddiscrimination. Barriers – inattitudes, the design of buildingsand policies, for example – still haveto be overcome by disabled people,reducing their opportunities andpreventing them fulfilling theirpotential. Too many services are

organised to suit providers ratherthan being personalised around theneeds of disabled people.

Nor is this a marginal issue. Up toone in five British adults is disabledand can find themselves cut off fromthe opportunities others enjoy. Andour economy and society, too, loseout if we don’t use their talents tothe full.

This Government is committed to improving the life chances ofdisabled people. Through theDisability Discrimination Act and the creation of the Disability RightsCommission, new rights are beingprovided and enforced. We arehelping disabled people to get backinto work through the New Dealand to have personalised supportthrough Direct Payments.

Foreword by the Prime Minister


But despite progress, there is moreto do. Disabled people remain morelikely to live in poverty, to havefewer educational qualifications, to be out of work and experienceprejudice and abuse. They stillroutinely find themselvesexperiencing poorer services.

This report therefore sets out anambitious vision for improving thelife chances of disabled people sothat by 2025 disabled people havefull opportunities and choices toimprove their quality of life and willbe respected and included as equalmembers of society.

I strongly welcome this report andits recommendations, which will betaken forward and implemented asfuture Government policy. Allsections of society will of coursehave a role to play in realising ourvision. But working together Ibelieve we can achieve thetransformation in disabled people’slife chances that we all seek.

Tony Blair

7EXECUTIVE SUMMARY

Key Points

This report sets out an ambitious programme of action that will bringdisabled people fully within the scope of the “opportunity society”. By supporting disabled people to help themselves, a step change can be achieved in the participation and inclusion of disabled people.

The report proposes that the Government should set an ambitious vision for improving the life chances of disabled people. ‘By 2025,disabled people in Britain should have full opportunities and choices toimprove their quality of life and will be respected and included as equalmembers of society’.

Future strategy for disabled people should seek to realise this visionthrough practical measures in four key areas.

(1) Helping disabled people to achieve independent living by movingprogressively to individual budgets for disabled people, drawingtogether the services to which they are entitled and giving themgreater choice over the mix of support they receive in the form ofcash and/or direct provision of services. In the shorter term, measuresshould also be taken to improve the advice services available todisabled people and to address existing problems with suitablehousing and transport.

(2) Improving support for families with young disabled children byensuring families of disabled children benefit from childcare and early education provided to all children; meeting the extra needs of families with disabled children; and ensuring services are centred on disabled children and their families, not on processes and funding streams.

(3) Facilitating a smooth transition into adulthood by putting in placeimproved mechanisms for effective planning for the transition to adulthood and the support that goes with this; removing“cliff edges” in service provision; and giving disabled young peopleaccess to a more transparent and more appropriate menu of opportunities and choices.

1 Executive Summary


(4) Improving support and incentives for getting and staying inemployment by ensuring that support is available well before abenefit claim is made; reforming the gateway onto entitlements;providing effective work-focused training for disabled people; andimproving Access to Work and other in-work support – all of whichwill see more disabled people in work, contributing to theGovernment’s overall targets for employment.

This package of measures extends choice and improves incentives fordisabled people. It should deliver improved outcomes for disabled people,their families and wider society in the short, medium and long-term. The Government has accepted all the recommendations in this report. The strategy will now be driven forward by a new Office for DisabilityIssues reporting to the Minister for Disabled People. Annual reports onprogress will be presented to the Prime Minister and published on theweb. Implementation of these measures should take account of the needs of older people who are disabled or who have care requirements.

Disability should be distinguishedfrom impairment and ill health

For the purposes of this report,disability is defined as:

• disadvantage experienced by an individual ...

• ... resulting from barriersto independent living oreducational, employment or other opportunities …

• … that impact on people withimpairments and/or ill health.

A clear distinction needs to be madebetween disability, impairment and ill-health. Impairments are long-termcharacteristics of an individual thataffect their functioning and/orappearance. Ill health is the short-term or long-term consequence ofdisease or sickness.

Many people who have animpairment or ill health would notconsider themselves to be disabled.

Disabled people face a wide range of barriers

The types of barriers faced bydisabled people include:

• attitudinal, for example amongdisabled people themselves andamong employers, healthprofessionals and service providers;

• policy, resulting from policydesign and delivery which do nottake disabled people into account;

• physical, for example through thedesign of the built environment,transport systems, etc.; and

• those linked to empowerment, asa result of which disabled peopleare not listened to, consulted orinvolved.

9EXECUTIVE SUMMARY

The cumulative effect of thesebarriers is to marginalise disabledpeople from the mainstream ofsociety and the economy. Removalof these barriers is key toempowering disabled people, andgiving them the opportunity toexercise their responsibilities ascitizens – in the home, in thecommunity and in the workplace. It is time to end the culture ofdependency and low expectations,and move towards a society in whichwe invest in disabled people,empowering and supporting themto participate and be included.

The population of disabled people is large …

Using the widest survey definition, it is estimated that there are about11 million disabled adults in the UK– one in five of the total adultpopulation – and 770,000 disabledchildren. Many of these peoplewould not define themselves asdisabled. The majority of thesepeople experience low levelimpairments – wheelchair users,blind people and Deaf people make up an important minority. The population of disabled people is distinct from and much largerthan the three million people inreceipt of disability related benefits.

… highly diverse …

The population of disabled people is highly diverse. It includes peoplefrom all age groups and across theincome and education spectrum.

There are large differences inimpairment experienced by disabled people. Because of this,generalisations are often unhelpful.Disabled people with differentimpairments, from different socio-demographic backgrounds and facing different barriers willhave very different day-to-dayexperiences.

… and changing

Older people are more likely to be disabled than younger people, but over the past thirty years theincidence of disability has risenfastest amongst children – though it is not clear to what extent thissimply reflects increased reporting.Trends in impairment show anincreasing number of children beingreported as having complex needs,Autistic Spectrum Disorders andmental health issues. Among adultsthere are increasing numbers ofpeople reporting mental illness andbehavioural disorders, while thenumber of people reporting physicalimpairments is decreasing. This report is primarily about theneeds of disabled people belowpension age, but many of theproposals in the report will help toimprove the life chances of disabledpeople across the entire life-course.


Disabled people experiencedisadvantage in many aspects of daily life

Compared with non-disabledpeople, disabled people are:

• more likely to live in poverty – the income of disabled people is,on average, less than half of thatearned by non disabled people;

• less likely to have educationalqualifications – disabled peopleare more likely to have noeducational qualifications;

• more likely to be economicallyinactive – only one in two disabledpeople of working age arecurrently in employment,compared with four out of fivenon-disabled people;

• more likely to experienceproblems with hate crime orharassment – a quarter of alldisabled people say that they haveexperienced hate crime orharassment, and this number risesto 47% of people with mentalhealth conditions;

• more likely to experienceproblems with housing – nine out of ten families with disabledchildren have problems with their housing;

• more likely to experienceproblems with transport – theissue given most often by disabledpeople as their biggest challenge.

However, the cause of this appearsto work in both directions: people

are also more likely to becomedisabled if they have a low income,are out of work or have loweducational qualifications.

The extent of the disadvantage is especially acute for some specificgroups of disabled people

Disabled people often experiencemultiple forms of labour marketdisadvantage1:

• More than 40% of disabled people are low-skilled

• Around 25% of disabled people of working age are over-50yrs

• Around 10% are from black andethnic minority ethnic groups

For these groups there can becumulative problems which add upto an even bigger impact on theirlife chances and quality of life.

Disabled people with some specificimpairments face particularly pooroutcomes. People with mentalhealth conditions or learningdisabilities have poorer educationalqualifications, do much less well inthe labour market and generallyhave lower incomes than otherdisabled people.

Disadvantage among disabledpeople has significant economic and social costs

The adverse outcomes experiencedby many disabled people reducequality of life both for disabledpeople themselves and for theirfamilies. Many disabled people

1Data in this paragraph are from the Labour Force Survey (2001/02).

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feel isolated, unwanted and aburden to society. Their families –parents, children and siblings – canalso face negative attitudes, povertyand social exclusion. Many feel thatthey spend far too much timefighting bureaucracy – when theyshould be receiving the support theyneed to help themselves.

This has economic and social costs.Many disabled people are unable tomake an effective contribution totheir local community and economy– yet with the right support, theycould be working and activelytaking part. Disabled peoplecurrently out of work represent asignificant pool of potential skillsand abilities – if only that potentialcould be tapped, and expectationsraised. Instead of being empoweredto work, earn, spend and pay taxes,too many disabled people are left to depend on benefits andgovernment support. And, pooreconomic outcomes during theirworking lives prevent disabledpeople from providing comfortablyfor old age, thus prolongingdisadvantage into retirement.

Government intervention is justifiedon a number of grounds

Government intervention to improvethe life chances of disabled people isa key element of building a genuine“opportunity society”. Social justicerequires government to take stepsto extend opportunities, choice andempowerment for disabled people,promote diversity and improvestandards of living for all.

Such intervention will, in manycases, also bring net benefits to theeconomy – for example, through a widening of the skills base and an increase in productivity.

And in some cases, intervention willbe justified on straight value formoney grounds – for example, ifmore disabled people are helpedinto work, there will be increasedtax revenues and lower spending on incapacity benefits.

Tackling these barriers is not amatter for government alone

Disabled people themselves,employers, health professionals,educators, local communities, andproviders of goods and services allhave a key role in improving the lifechances of disabled people.

Disabled people’s experience ofgovernment support and servicesneeds to change. Too often disabledpeople feel that they are fighting a system which is fragmented,complex and bureaucratic, andwhich does not put the needs ofdisabled people at the heart ofservice provision. Public servicereform and investment has not yetbenefited disabled people to theextent it should.

This report sets out an ambitiousvision for improving the life chances of disabled people

A step change is needed in the waythe disadvantage faced by disabledpeople is tackled. This cannothappen overnight – which is why

EXECUTIVE SUMMARY


this report has established anambitious 20-year vision:

“By 2025, disabled people inBritain should have fullopportunities and choices toimprove their quality of life, andwill be respected and included asequal members of society.”

A radical strategy is needed torealise this vision – building on theprogress made since 1997

This report sets out a long-termstrategy for change. The strategywill empower and involve disabledpeople, personalise the support theyreceive and remove the barriers toinclusion and participation. It willbuild on the considerable progressthat has already been made inpromoting and protecting disabledpeople’s rights, in improving choiceand in supporting disabled people in education, employment and otherforms of participation.

The centrepiece of the strategymust be the promotion ofindependent living

Independent living sits at the heart of this strategy. Independent living isnot just about being able to live inyour own home – though that isoften part of it for many disabledpeople. Rather, independent living isall about providing disabled peoplewith:

• choice;

• empowerment; and

• freedom.

This does not mean that disabledpeople are expected to doeverything for themselves – but theyare expected have the biggest say inwhat they do and how they livetheir lives, and to take responsibilityfor their lives. The independentliving agenda cuts across a numberof different policy areas – socialcare, health care, housing, transport,education and beyond.

This report sets out first stepstowards achieving the vision

Practical measures identified in this report fall under four main headings:

• independent living;

• support for families of youngdisabled children;

• transition into adulthood; and

• support and incentives for gettingand staying in employment.

(1) Independent living

A way of supporting independentliving should be put in place

A new way of supporting disabledpeople is needed, focused on thegoal of independent living. Overtime, this new approach shouldbring together existing fundingstreams that are currentlyfragmented, and which requiredisabled people to go throughmultiple assessments in order toaccess different forms of support.

The new approach should alsoallocate available resources fromwithin the overall budget, according

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to individual needs. Allocationsshould be in the form ofindividualised budgets that aremade transparent to the disabledperson. Disabled people – and thefamilies of disabled children –should be able to choose whetherthey take their individualisedbudget in cash, in some combinationof services and cash payments, orentirely as services commissioned by their local authority. The budgetsshould be used to get whatever typeof support the individual needs –whether it is equipment, personalassistance, housing adaptations, help with transport to work orsomething else entirely.

The overall aim of the newapproach should be to make surethat resources are allocated andservices delivered in ways that:

• personalise responses to need;

• enable people to have choice andto be empowered over responsesto need; and

• support disabled people to help themselves.

An important first step towards thisnew approach will be to test outsome of the options

The new approach will require someradical changes to the way in whichbudgets are organised and servicesare delivered across a wide range of policy areas, governmentdepartments and local serviceproviders. These changes will taketime to get right – this reportenvisages that, subject to evaluation

evidence and availability ofresources, national roll-out of a newsystem could take place by 2012.

Some of the elements for the designof this system will need to bepiloted – this report envisages astaged approach. In the short term,the focus should be on working with local authorities – and whereappropriate with Local StrategicPartnerships taking forward LocalArea Agreements – who are alreadytaking steps to introduce elementsof this system. The aim should be to build a coherent evidence base,without adding to local authorityburdens. In parallel, the case shouldbe considered for an invest-to-savefund to be bid for in SpendingReview 2006. The aim of such a fund would be to provide up-frontresources to facilitate furtherevidence-building and to introducethe changes required by the new system.

Disabled people should be at theheart of these initiatives

One of the key ingredients fordeveloping this new approachshould be the direct involvement ofdisabled people, primarily throughlocal Centres for Independent Living.The capacity within theseorganisations should be increased toenable them to play an effectivepart in supporting disabled peopleto achieve independent living.Centres for Independent Living arepotentially well-placed to provideadvice and information, advocacysupport and practical assistance inmanaging individualised budgets.

EXECUTIVE SUMMARY


Steps should also be taken toimprove the provision of advice,housing and transport options for disabled people

Some needs of disabled people are so acute that it would beinappropriate to wait until the long-term to implement changes.This report therefore recommendsspecific changes to secure:

• improvements to the availabilityof independent advocacy;

• easier access to advice andinformation – so that all disabledpeople and their familiesunderstand their entitlements and rights;

• consideration of the adoption ofupdated Lifetime Homes standardsand improvements to the use of accessible properties andDisabled Facilities Grants – makingsure that disabled people canaccess housing accommodationwhich is more able to meet theirneeds; and

• increased local authorityaccountability for making surethat all aspects of disabledpeople’s transport needs are taken into account.

(2) Early years and family support

The early years are a critical periodfor disabled children – many ofwhom live in child poverty

Child development and future lifechances are critically affected by the

support and services received byyoung disabled children and theirfamilies. Targeting support at thesefamilies will also play a major role indelivering the Government’s targetto abolish child poverty – childrenfrom lower income households aremore likely to report long standingillness or disability and mentalhealth issues, reflecting a two-wayrelationship between low incomeand disability.

Families of disabled children shouldhave access to individualisedbudgets – providing choice andcontrol across multiple transitions

Families with young disabledchildren have additional needswhich should be met. They mayneed specialist equipment or requirehousing adaptations. These needsmay be specific to the child – such as assistive technology – or be partof the wider implications of having a disabled child with significantneeds – such as need for home-based support.

Just like disabled adults, families of disabled children should, in due course, be able to accessindividualised family budgets tomeet the additional needs arisingfrom the child’s impairment. Thesewould address the needs of thefamily as a whole arising from thechild’s impairment, and so give thefamily choice and control over thesupport and services they receive.

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Families of disabled children mustbe included in the support providedto all families

Early years and family support is adynamic policy area with many newinitiatives aimed at strengtheningdevelopment and support for veryyoung children. It is crucial thatdisabled children, alongside theirnon-disabled peers, are able tobenefit from these reforms.

In the future, all nationalevaluations of children’s services –including Sure Start – shouldspecifically assess the impacts onfamilies with disabled children, and recommend specific actions toaddress barriers to their inclusion. In addition, guidance for evaluationsof children’s services carried out at alocal or regional level should bedeveloped to make sure they takeaccount of the needs of the localdisabled children’s population.

Key services for disabled childrenand their families must be centredon their needs, not on processesand funding streams

The fragmentation, complexity andbureaucracy of service provision areparticularly acute for families ofdisabled children. This can createartificial barriers and inefficientrestrictions – such as provision of transport between a child’s school and home, but not includingleisure facilities.

Individualised budgets will in duecourse play a key role in overcomingthese barriers. But there are a

number of key services for whichdisabled children and their familiesmust have effective access as soon as possible:

Disabled children and their familiesshould have timely access to theequipment they need, when andwhere they need it. This will requirecommon assessment processes andfunding across health, educationand social services, and will meanthat equipment must be updatedand maintained without delay.

All families with a disabled childshould receive childcare provisionwhich is sustainable, high quality,flexible, affordable and accessible –in other words, implementation ofthe 10-year Strategy for Childcareshould include disabled children and their families on equal termswith non-disabled children and their families.

And a key worker should be in placefor all families with high needs, toprovide them with information,improve communication andcoordinate early intervention.Availability of key workers should be considered for inclusion in theassessment of local social care andeducation services.

(3) Transition to adulthoodEffective support needs to remainavailable for disabled young people

The benefits of early yearsintervention will be lost if thetransition through childhood andinto adulthood is not managed

EXECUTIVE SUMMARY


effectively. There are three keyingredients needed for effectivesupport for disabled young peopleat the transition to adulthood.

• Planning for transition focused on individual needs.

• Continuous service provision.

• Access to a more transparent andmore appropriate menu ofopportunities and choices.

Over time, individualised budgetsshould mean a seamless transitionfrom childhood to adult services

Individualised budgets should, indue course, give young disabledpeople and their families increasedchoice and control.

• Individual budget plans should beformulated in childhood andcarried into adulthood andreviewed in response to changesin need, not age.

• User-led advice, information and advocacy services should beprovided in every local authorityto support families to managetheir budgets, if they choose to do so.

In the shorter term, child and adult services should overlap toremove the ‘cliff edge’ in provisionexperienced by many disabledyoung people

Many disabled teenagers, especiallythose with learning difficulties,could benefit from children’s serviceswell beyond the current age cut-offsfor those services. To address this,

child services such as Children’sTrusts and the Family Fund shouldmove to include all disabled peopleup to the age of 25, and shouldsupport disabled young people whoare living at home or moving intoindependent living. At the sametime, adult services such as theExpert Patients Programme shouldbe made increasingly available todisabled young people.

Improved transitions require greaterfamily support, personalisation,continuity, and opportunity

Alongside these other measures,transitions to adulthood should be improved for young disabledpeople through:

• the availability of informationincluding accessible local andnational information on transitionprocesses, services andopportunities;

• mapping, dissemination and – indue course – national take-up ofthe most effective person-centredprocesses already in place at alocal level; and

• ensuring that advice and guidancegiven to young disabled people,including Connexions, meets theneeds of young disabled people.

(4) Employment

Recent government policy hasdelivered some significantimprovements – but more isneeded to improve the labourmarket status of disabled people

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The Government has introduced anumber of changes since 1997,including the New Deal for DisabledPeople, extensions to the DisabilityDiscrimination Act 1995, thenational minimum wage andPathways to Work. These changeshave improved incentives andassistance for people to move offbenefits and into work, and haveplaced additional requirements onemployers to employ disabledpeople. However, more is needed to improve the labour market statusof disabled people, and to raiseexpectations for what disabledpeople can achieve in work. This report supports the nationalimplementation of Pathways to Work, subject to evaluation and subject to resources being made available.

Future government policy should bedesigned to ensure that in twentyyears time any disabled person whowants a job and needs support toget and keep a job anywhere in thecountry should, wherever possible,be able to do so. Any employerwanting to employ a disabledperson should be able to find theright person and the right support.Recommendations to promoteindependent living will play a keyrole – but additional measures willalso be needed.

Effective early intervention shouldhelp disabled people to stay intouch with the labour market

Too often, employment-focusedsupport is not accessed untildisabled people have spent sometime out of work and away from the

labour market – either because theyhave never worked, or because theyhave been in a period of long-term“sickness absence”. Interventions atthis late stage can be inefficient.This report makes two sets ofrecommendations which shouldensure that support is providedearlier on in the process:

• A strategy for work-focusedrehabilitation, building on theframework for vocationalrehabilitation, should engageemployers and healthprofessionals, identifying bestpractice and making sure that themost effective use is made of theresources available;

• Building on Pathways to Work,assessments for incapacity benefitentitlement should be movedcloser to the start of the claim,and should be used as much toassess what support is needed to enable someone to return to work, as to assess their benefit entitlement.

Steps should be taken to improve the employability ofdisabled people

There are two key elements toimproving the employability ofdisabled people:

• Disabled people need to have the skills that employers want –compulsory education needs toplay a key role in making sure thatthis is the case, but there shouldalso be a role for more effectivetraining and access to “lifelonglearning” for disabled people;

EXECUTIVE SUMMARY


• Disabled people should be able tohave ready access to the personalsupport they need in order towork – this would require furtherimprovements to the alreadysuccessful Access to Workprogramme. At the same time, allemployers should be able to accessthe effective advice and financialsupport to make the necessaryworkplace adjustments.

Disabled people should be able toaccess ongoing support personalisedto their specific circumstances

Building on the success of the “New Deal” schemes, government is moving increasingly towards amenu-driven approach. Peopleshould be able to access supportfrom a range of choices, focusingtheir own package of support ontheir own personal needs.

This report endorses the sameapproach for disabled people,ensuring that support is providedaccording to people’s needs, and isfocused on enabling disabled peopleto maximise their potential and fulfiltheir aspirations. Case managersshould be made available to helpdisabled people make the rightchoices, building on the way inwhich Jobcentre Plus personaladvisers have been used in Pathwaysto Work. Over time, this shouldcontribute towards achievement ofmuch higher employment rates fordisabled people, as a contribution to the achievement of a higheremployment rate for the populationas a whole.

Employers have a key role to play –but need to be able to access theright advice and information

This project has taken advice froman employers’ working groupconvened by the NationalEmployment Panel. On the basis ofthis advice, this report recommendsthat employers should lead acampaign on the business benefitsof employing disabled people withinput from DWP and DTI. Thisshould be backed up by improvedaccess to information targetedspecifically at employers.

All government departments will beresponsible for driving forward thisstrategy and the implementation ofthese practical measures

The Government has accepted allthe recommendations in this report.It will be the collective responsibilityof all government departments toensure that the recommendations in the report are taken forward. The report also establishes an Officefor Disability Issues – reporting tothe Minister for Disabled People – to help coordinate disability policyacross government.

Annual reports on progress will bepresented to the Prime Minister

Ongoing commitment to the visionand strategy in this report will besecured through a requirement foran inter-departmental report onprogress to be presented annuallyto the Prime Minister and thenpublished on the web.

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Implementation of this package ofmeasures should:

• increase disabled people’s abilityto live independently – to enjoythe same choice, control andfreedom as any other citizen – at home, at work, and asmembers of the community;

• enable young disabled childrenand their families to enjoy‘ordinary’ lives, through access to childcare, early education andearly family support to enablethem to care for their childeffectively and remain socially and economically included;

• support disabled young peopleand their families through thetransition to adulthood. Transitionwill be better planned around theneeds of the individuals andservice delivery will be smoothacross the transition; and

• increase the number of disabledpeople in employment whileproviding support and security for those unable to work.

Successful implementation of theproposals in this report will depend,where necessary, on the appropriatelevel of funding being madeavailable as a result of successfuloutcomes from future spendingreviews. But in overall terms, a more efficient approach whichpromotes increased economicparticipation should deliver a neteconomic benefit in the medium to long term.

EXECUTIVE SUMMARY

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This introductory chapter sets outthe context and the aims of theproject (Section 1.1). It thendescribes the scope and limitationsof this report (Section 1.2). Recentdevelopments in legislation andpolicy are highlighted in Section 1.3.The next section (1.4) defines someof the key terms and concepts usedin the report. Details of how theproject was conducted and whoparticipated are provided in Section1.5. Sections 1.6 and 1.7 outline the main phases of the project andnext steps. Finally, Section 1.8 setsout the way in which the report is structured.

1.1 Project context

The Strategy Unit was set up in 2002and reports to the Prime Ministerthrough the Chancellor of the Duchy of Lancaster and the CabinetSecretary. Its core business isproviding the Prime Minister andgovernment departments with acapacity to analyse major policyissues and design strategic solutions. (See Annex A for more details.)

The overall aim of this project wasto identify ways of improving thelife chances of disabled people

The Government has recognised thatdisabled people do less well thannon-disabled people across a widerange of indicators of quality of life.Disabled people interact with a

INTRODUCTION

Summary

The main objective of the Strategy Unit (SU) project was to identify waysof improving the life chances of disabled people.

The report focuses on disabled children and disabled people of workingage. However, the vision and strategy have been designed to ensureconsistency with the approach to people over working age.

This report presents the project’s conclusions and recommendations. The UK Government has made a commitment to implement the project’srecommendations in England and, where appropriate, across the UK.

The project was carried out by a multi-disciplinary team including teammembers with experience in economics, social policy, local governmentand with expertise in disability issues.

Chaper 1: Introduction


range of government services, andface barriers that cut acrossdepartmental responsibilities. In thiscontext, the Strategy Unit was askedby the Prime Minister to carry out a project which would:

• assess the extent to which disabledpeople are experiencing adverseeconomic and social outcomes in the UK;

• identify why this is happening,and what are its implications; and

• assess what could be done toimprove the situation, in particularby making better use of existingresources.

This report presents the project’sconclusions and recommendations

The project was announced inDecember 2003, and publishedan Interim Analytical Report in June 2004. This report marks theend of the project, and presents the projects conclusions andrecommendations. The report has been accepted by the UKGovernment and there is acommitment to implement theproject’s recommendations inEngland and, where appropriate,across the UK. Options forimplementation will also bediscussed with the devolvedadministrations. The report shouldbe seen as the start of a process ofpolicy reform that will improve thelife chances of all disabled people

and contribute to closing theattainment gap compared with non-disabled people.

1.2 Scope and limitations of this reportIt is important to clarify from theoutset groups that will be within the direct remit of this report

Disability affects all age groups.Some impairments and illnesses areparticularly associated with ageing,while some people carry lifetimedisability into retirement. This reportis primarily about the needs ofdisabled people below pension age,but it is important to remember thatthose needs do not stop – and forsome people only start – afterpension age. Many of the proposalsin the report will help to improvethe chances of disabled peopleacross the entire life-course, but thisproject has not considered in detailtheir interaction with policies andrequirements affecting elderlypeople. The implementation of therecommendations will need toachieve consistency and avoiddifferences in treatment that arebased purely on age2.

The Government’s SpecialEducational Needs (SEN) Strategy –Removing Barriers to Achievement –set out the Government’s approachfor supporting the learning ofchildren with SEN. The Strategy waslaunched in February 2004 and willneed to be fully evaluated once

2 A consultation document on improving access to services to older people was publishedby the Department for Work and Pensions and the Local Government Association inAugust 2004. The proposals, published in a document called Link-Age, aim to simplifyaccess to services and help by linking up provision across and beyond government,initially between the Pension Service and local authorities.

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it has had time to take effect. For this reason, this report has notdeveloped detailed proposals fordisabled children in primary andsecondary education.

There are limitations to the data available about the disabled population

Data on the numbers of disabledpeople and their characteristics aretaken from population surveys. There are a number of limitations to these data. The accuracy ofpopulation estimates based on surveydata will depend whether the sampleused is representative of thepopulation. Furthermore most dataon disability relies on self-reporting,and for certain impairments –particularly mental health conditions– under-reporting may occur. To increase the reliability ofestimates, a large sample size isneeded – but is often not available,particularly when data isdisaggregated by impairment type.This means that it is not alwayspossible to disaggregate thepopulation and discuss specificcharacteristics such as averageeducation levels or employment ratesreliably. Such analysis has thereforebeen left out of this report.

In devolved areas of policy therecommendations will apply toEngland only

The devolved administrations of Scotland and Wales haveresponsibility for devolved issues;therefore the conclusions in theseareas apply to England only.

The devolved administrations maywish to consider if the actionsidentified in these areas areappropriate for them and, if so, how to take them forward. More work will be needed toidentify the implications of some of the proposals within thedevolution context.

The report does not seek to amendexisting legislation pertaining to theDisability Discrimination Act (1995)and the new Draft DisabilityDiscrimination Bill

The Disability Discrimination Act(DDA) and the new DisabilityDiscrimination Bill are described insection 1.3. The draft bill representsa significant step in extending civilrights and opportunities for disabledpeople. The existing andforthcoming legislation togetherform an important backdrop to thisreport, and are taken as a given forthe forseeable future. The same istrue of progress towards a newCommission for Equality and HumanRights (CEHR), which will bringdisability together with otheraspects of the equality and diversityagenda (see section 1.3).

1.3 Recent developments inlegislation and policyThere have been many importantpolicy developments that shouldhave a positive impact on disabledpeople’s life chances

This report builds on the considerableprogress that has been made in recent years.

INTRODUCTION


• Disability Discrimination Act 1995 – the 1995 DDA Act was the first anti-discriminationlegislation specifically aboutdisabled people. It enshrines inlaw disabled people’s rights toparticipate in civil society throughapplication to employers, serviceproviders, landlords and schoolsand colleges. Some elementsbecame law for employers inDecember 1996. Others wereintroduced over time3.

• The Disability Discrimination Act(Amendment) Regulations 2003extended the DDA to firms withfewer than 15 employees andprovided new protection fordisabled fire-fighters, police, officeholders, barristers, partners inpartnerships and people seekingvocational qualifications. The provisions were brought intoforce on 1 October 2004.

• The Draft Disability DiscriminationBill will amend the DisabilityDiscrimination Act 1995 (DDA) in various ways. It introduces

a wide range of measuresrecommended by the DisabilityRights Taskforce. A particularlysignificant amendment is a newduty placed on the public sector‘to promote disability equality’(this parallels the Race RelationsAmendment Act)4.

• The Commission for Equality andHuman Rights – the Governmentannounced in October 2003 plansto set up a new Commission forEquality and Human Rights. It isintended to bring together thework of the three existing equalitycommissions – the Commission forRacial Equality (CRE), the DisabilityRights Commission (DRC) and theEqual Opportunities Commission(EOC) – and take responsibility for new laws outlawing workplacediscrimination on the grounds of age, religion or belief, and sexual orientation.

• The Supporting Peopleprogramme was launched on 1 April 2003 to support vulnerablepeople, including disabled people,

3 For service providers (e.g. businesses and organisations): - since December 1996 it has been unlawful to treat disabled people less favourably than

other people for a reason related to their disability; - since October 1999 they have had to make reasonable adjustments for disabled people,

such as providing extra help or making changes to the way they provide their services;and

- from this year (2004) they have had to make reasonable adjustments to the physicalfeatures of their premises to overcome physical barriers to access.

For employers, those with fewer than 20 employers were excluded. This exclusionthreshold was changed to 15 employees in December 1998. From 1 October 2004, thesmall exclusion was ended.For education providers, new duties came into effect in September 2002 under Part IV of the DDA amended by the Special Educational Needs and Disability Act (SENDA).

4 The draft bill will also amend the DDA by: covering transport vehicles in Part 3; extendingduties on reasonable adjustments to landlords and others who manage rented premises;covering larger private clubs; extending the rights of disabled local councillors; andbringing people with HIV, cancer and multiple sclerosis into scope.

25

to sustain or improve their ability to live independently.The programme has for the first time allowed the provision ofhousing-related support services to be properly planned at thelocal level, allowing services toreflect local needs and prioritiesand to be better integrated withother local services.

• The Government’s Strategy forSEN (Special Educational Needs) –“Removing Barriers toAchievement” was launched inFebruary 2004. It sets out theGovernment's vision for enablingchildren with special educationalneeds to realise their potential.And it establishes a programme of sustained action over a numberof years to support early yearssettings, schools and localauthorities in improving outcomesfor children with SEN, within thecontext of the wider programme toimprove outcomes for all childrendescribed in “Every Child Matters”.

• The Children’s National ServiceFramework – published jointly bythe Department of Health and theDepartment for Education and Skills in September 2004, the NSFsets standards for services fordisabled children and theirfamilies against which services willin future be inspected.

• “Pathways to Work” has beendesigned to improve workopportunities for those onIncapacity Benefit (IB). It sets out a strategy for encouraging and

assisting those people movingonto Incapacity Benefit to returnto work. The aim is to enablepeople to overcome obstacles to work, by focusing on theircapabilities and therebychallenging the belief that people with health conditions are incapable of doing any work. It has been piloted in three areassince October 2003, and a furtherfour areas since April 2004.

• The New Deal for Disabled People(NDDP) aims to help people ondisability and health-relatedbenefits move into and keep paid work through a network of Job Brokers.

• “Building on New Deal (BoND):Local solutions meeting individualneeds” is the Government’sstrategy for the evolution of welfare to work policies and programmes.

• DWP has developed a “Frameworkfor Vocational Rehabilitation”,published in October 2004, whichpulls together information aboutbest practice, research andavailable capacity, and is insupport of progress along theroadmap towards IB reform.

• Vision for Adult Social Care – theSocial Care Institute for Excellence(SCIE) has been helping theGovernment to consult withpeople who work in and who usesocial care services on the futureof adult social care. The resultswere published in August 2004,

INTRODUCTION


and are feeding into agovernment Green Paper due to be published later this year.

• Mental Capacity Bill will create a new statutory framework formaking decisions about financial,health and social issues on behalf of people who lack mental capacity.

• DH has published the White Paper“Choosing Health” which sets outactions to prevent injury, illnessand impairment, and initiatives toassist recovery for full participationin community and working life.

1.4 Definitions and concepts What is disability? And who aredisabled people?

Disability is subject to a number ofdifferent definitions

Disability is defined for this projectas the disadvantage experienced byan individual as a result of barriers(attitudinal, physical, etc.) thatimpact on people with impairmentsand /or ill health.

Disability is distinct from both:

• impairment – a long-termcharacteristic of an individual whichaffects their functioning and / orappearance and may give rise topain, fatigue, communicationdifficulties, etc; and

• ill health – the short-term or long-term effect of disease or sickness5.

Many people who have animpairment or ill health would notconsider themselves to be disabled.

For young people, “SpecialEducational Needs” is anotherimportant concept. This term wasfirst recognised in the 1981Education Act and includes childrenwith “a learning difficulty, whichmay be the result of a physical or sensory disability, an emotional or behavioural problem, ordevelopmental delay”.

Box 1.1: The difference betweendisability, impairment and ill health

Most people have some form ofimpairment or ill health at somepoint in their lives. This may betemporary (e.g. pneumonia) orpermanent (e.g. blindness,rheumatoid arthritis). Many peoplewith an impairment or ill health donot necessarily think of themselvesas disabled. But many of thesepeople would be defined asdisabled under a range ofmeasures – and the extent of theirdisadvantage will be determinedby the barriers they face and bythe support they receive for theirindividual needs:

• An individual may be hard ofhearing. Someone with this form of impairment is disabled becausecommunication generally relies on being able to hear effectively.But if this person has access to a digital hearing aid, the extent

5 The distinction between impairment and ill health is not always clear-cut. Alternativeterminology speaks of “long-term conditions” or “chronic disease”, both of which focusprimarily on permanent ill health.

27

of their disadvantage will berelatively small.

• Another person may haveMultiple Sclerosis. This is theirimpairment, and if they are awheelchair user, they may be disabled because public transport is inaccessible to them. They mayalso develop ill health, becausethey are more susceptible toadverse effects from colds or the flu. Ill health may also resultfrom disabling barriers: forexample, lack of an appropriatewheelchair cushion may lead topressure sores.

The phrase “disabled people” cantherefore include anybody who isdisadvantaged by the way in whichthe wider environment interactswith their impairment or ill health.In practice, “disabled people” aredefined in different ways to includeor exclude different groups. There isno single agreed definition.

Box 1.2: There are large numbersof disabled people, and importanttrends changing the characteristicsof disabled people

• According to some definitionsthere are currently around 11million disabled adults and770,000 children in the UK,equivalent to 24% of the adult population and 7% of all children.6

• One in twenty children under 16-years old is disabled and there

are increasing numbers ofchildren with complex needs7.

• Among adults, trends inimpairment show that anincreasing number of peoplereport mental illness andbehavioural disorders, while the number of people reporting physical impairments is decreasing.

• The prevalence of impairmentdiffers across ethnic groups.Black and minority ethnic groupsare less likely to reportimpairments than the whitepopulation, but they are more likely to experience pooroutcomes if they are disabled.

• Increasing life expectancycoupled with limitedimprovements in healthy lifeexpectancy means an increase in age-related impairment and disability.

But it is clear that:

• this is not a precisely definedgroup of people;

• there is considerableheterogeneity within thepopulation of disabled people;and

• the population of disabled peopleis not the same as those claimingdisability related benefits.Therefore, generalisations aboutdisabled people are unhelpful.

INTRODUCTION

6 ONS (2004) “Living in Britain: Results from the 2002 General Household Survey”7 Family Resources Survey G.B. (2002-03), DWP


For example, in consideringemployment, the primary focushere is on disabled people whoare out of work. Many of thesepeople – but not all – are claimingincapacity-related benefits. But many people claimingincapacity-related benefits would not consider themselves to be disabled.

Box 1.3: The heterogeneity of thedisabled population

There are three main sources of the heterogeneity of disabled people:

• Impairment type – includingvariation by severity, duration,age of onset, and the evolutionof the impairment over time. The issues faced by a personborn blind will be different fromthose faced by a person whodevelops a heart condition in their 50’s – but both may be disabled.

• Socio-demographiccharacteristics – includingvariation by social class, region,ethnicity, age or gender. The issues faced by a disabledchild born to a lone parent inTower Hamlets will be differentfrom those faced by a disabledchild born to a wealthy familyin Guildford.

• Impact of different barriers –every disabled person will face a different combination ofattitudinal, physical and socio-economic barriers.

1.5 Project participants andprocesses

Composition of the Strategy Unit team

The project was carried out by amulti-disciplinary team (see Annex B),including team members withexperience in economics, socialpolicy, local government and withexpertise in disability issues.

Links with other governmentactivities and external groups

The team has had regular meetingswith the study’s Sponsor Minister,Maria Eagle (Minister for DisabledPeople, Department for Work andPensions). The team has also metregularly with the Project AdvisoryGroup. The group, chaired by MariaEagle, was made up of Ministers,external experts and civil servants. In addition, the SU appointed expertadvisory groups to assist withdifferent aspects of its analysis. Full details are given in Annex B.

Throughout the study, the team has gathered external input. It has held a number of meetingsand discussions with a wide range of stakeholders and experts fromamong disabled people and theirrepresentatives, as well as other interested organisations (see Annex C). The team has also had regular contact withrepresentatives from keygovernment departments with an interest in this area, as well as with representatives from thedevolved administrations.

In addition to contact with officials,

29

the team organised extensive focusgroup consultations which includeddisabled people and carers tosupport the development of thepolicy options (see Annex D).Written responses were receivedfrom just under 100 correspondentsincluding individual responses andfrom a range of organisations (see Annex E).

1.6 Phases of the studyPhase one of the project was anextended scoping phase, runninguntil early February 2004. The Strategy Unit held meetingswith representatives of disabledpeople, service providers,government departments and otherorganisations. The Strategy Unit alsoreviewed the literature and evidencebase on disabled people's lifechances. The purpose of this phasewas to establish an overview of theevidence and identification of mainmessages. At the end of this phase,the Strategy Unit proposed someareas for more detailed analysis in Phase Two of the project. Thiswork highlighted the importance of transition points, and cross-cutting themes around policy designand delivery.

Phase two of the project was ananalytical phase, during which theSU undertook detailed analysis ofthe issues within the frameworkidentified in phase one. During thisphase the SU met a number ofstakeholders and experts from insideand outside government. At the endof this phase, the SU published for

comment an Interim AnalyticalReport8. The report drew togetherthe evidence of the disadvantagesthat disabled people experience,and provided an analysis of the keybarriers, an assessment of thecurrent policy map, and outlinedsome alternative approaches.

Phase three of the project, thepolicy recommendation phase, ranthrough the summer and involvedextensive consultation through focusgroups, expert groups and bilateralmeetings – as well as writtenresponses. This phase saw thedevelopment of the vision, strategyand specific recommendationsincluded in this report.

1.7 Next steps –implementation of the reportGovernment collectively will beresponsible for implementation

This report has been accepted by the UK Government and a process of implementation has been agreed.This process will involve allgovernment departments withresponsibility for policies whichimpact on disabled people’s lifechances. The day-to-day lead forimplementation will, in due course,transfer to the new Office forDisability Issues (see Chapter 8).Accountability for theimplementation of the report will be through a Ministerial Group,reporting on an annual basis to thePrime Minister. As implementation is taken forward, all departmentswill ensure that there is appropriateopportunity to comment on the

INTRODUCTION

8 The report remains available on the Strategy Unit website at www.strategy.gov.uk


details of policy changes.

There is a three-month opportunityto provide feedback to the StrategyUnit on this report

The Strategy Unit would welcomefeedback on this report and on theproject as a whole. Feedback shouldbe sent to:

[email protected]

Or to:Strategy Unit Disability TeamCabinet Office4th Floor, Admiralty ArchThe MallLondon SW1A 2WH

The deadline for responses is Friday 15th April 2005.

The report is available in a range ofalternative formats. Please contact the Strategy Unit at020 7276 1881 or [email protected] further information.

1.8 Structure of the report The remaining chapters of thisreport cover the following issues.

Chapter 2 draws on material fromthe Interim Analytical Report andfrom other sources in order toestablish the extent of thedisadvantage faced by disabledpeople, the costs of thatdisadvantage, and how the picture is changing over time.

Chapter 3 sets out how and whygovernment should address theproblems identified in Chapter 2 to improve the life chances ofdisabled people. The chapter setsout the vision that government hascommitted to achieve and the keygoals that need to be reached.

Chapter 4 on independent living puts forward arguments for enabling disabled people to fulfil their roles and responsibilitiesas citizens.

Chapter 5 looks at early yearsprovision and family support.

Chapter 6 considers transition to adulthood for disabled young people.

Chapter 7 sets out an overarchingvision that disabled people must be empowered, supported and well-equipped in order to enhancetheir employability. It also proposesmeasures to engage employers in recruiting and retaining disabled people.

Chapter 8 provides an assessment of how the programme of reformset out in previous chapters can be delivered effectively, focusing inparticular on the application of thepublic service reform agenda to theservices provided to disabled people.

Chapter 9 on implementation setsout recommendations for improvedarrangements in the design anddelivery of provision led by a newOffice for Disability Issues.

31

Annexes provide further details onthe preparation of this report andbackground analysis of some keyissues. Annexes A to C are includedin this report, and cover:

• the role of the SU (Annex A);

• the Project Team, SponsorMinister, expert advisory andworking groups (Annex B); and

• organisations consulted andsubmissions received (Annex C).

Annexes D to F are publishedseparately from the main report,and should be seen as backgroundaccompanying analysis. They can befound at www.strategy.gov.uk.

• A review of focus groupconsultations (Annex D).

• A review of the main messagesfrom responses to the analyticalreport (Annex E).

• The results of a literature reviewof the specific issues faced bydisabled people with the mostcomplex needs (Annex F).

INTRODUCTION

33THE CURRENT SITUATION AND ITS CAUSES

Summary

The population of disabled people is large – about 11 million adults and 770,000 children in the UK, using the widest survey definition. This equates to more than one-in-five adults, and around one-in-twentychildren – though many of these would not see themselves as disabled,and many do not claim disability-related benefits or use services aimedspecifically at disabled people.

The population of disabled people includes wheelchair users, blindpeople and Deaf people – these are an important minority of the total,but the majority of disabled people have other (often less visible)impairments. Among adults, trends in impairment show increasingnumbers reporting mental illness and behavioural disorders, while thenumber of people reporting physical impairments is decreasing.Although older people are more likely to be disabled than youngerpeople, trends show an increasing number of children reported as havingcomplex needs, Autistic Spectrum Disorders or mental health issues.

Disabled people are doing less well than non-disabled people across awide range of indicators and opportunities. Disabled people are morelikely to achieve lower outcomes in terms of employment, income andeducation. They are more likely to face discrimination and negativeattitudes, and often experience problems with housing and transport.

Poor outcomes are both a cause and a consequence of disability. Low incomes, non-employment, and low education all independentlyincrease the probability of someone becoming disabled. Many of theserisk factors are amenable to policy intervention. Often the onset of illhealth or impairment deepens pre-existing disadvantage.

The extent of the disadvantage is especially acute for some specificgroups. For example, although some black and minority ethnic groups are somewhat less likely to report impairment than the white

Chaper 2: The Current Situation and its Causes


This introductory chapter providesan overview of the evidence ondisabled people’s life chances.Section 2.1 outlines the scale of thechallenge faced. The relationshipbetween disability and life chances isdiscussed in Section 2.2. Section 2.3then turns to examine the costs of disadvantage for disabledpeople, their families, the economyand wider society.

2.1 The scale of the challengeThere are currently around 11million disabled adults in the UK,equivalent to 21% of thepopulation9.

Over the last 30 years there hasbeen an increase in the number ofpeople reporting an impairment

Since 1975, the fastest growth innumbers has been for children –from 476,000 disabled childrenunder the age of 16 in 1975, to772,000 in 2002. This represents

population, they are more likely to experience poor outcomes if they aredisabled. People with mental health conditions or learning difficulties alsoface particularly poor outcomes.

The disadvantage faced by disabled people imposes significant economicand social costs – on disabled people, on their families and friends, on thewider community and on the economy. Instead of being empowered toparticipate and be included, too many disabled people are left to dependon benefits and government support.

0

2

4

6

8

10

12

14

1975 1981 1985 1991 1995 1996 1998 1998 2000 2001 2002

Retired

Workingage

Children

mill

ions

Figure 2.1: Number of people who reported a limiting longstanding illness or disability by age, UK

Source: ONS (2004) Living in Britain: Results from the 2002 General Household Survey

9ONS (2004) “Living in Britain: Results from the 2002 General Household Survey”

35

an increase of 62%. Possibleexplanations include increasingprevalence of impairment amongchildren, children with complexconditions surviving longer,increased diagnosis, increasedreporting and/or overall increases in the population. Over the sameperiod the number of adultsreporting impairment has increasedby 22% from 8.7 million to 10.7million people.

One in twenty children under 16-years-old is disabled and there areincreasing numbers of children withcomplex needs

Evidence suggests that the numbersof children with complex andsignificant needs appear to beincreasing. Increases of this type arepartly associated with medical

advances enabling severely disabledchildren to survive infancy and tolive longer. One study estimates an11% increase in paediatric artificialfeeding at home between 2001 and2002, which is associated with homedelivery and support services10.

There has also been an increase inthe likelihood of diagnosis and/orprevalence of both AutisticSpectrum Disorders and mentalhealth issues in young children. The Medical Research Council statesthat Autistic Spectrum Disorders(ASD) affect approximately 60 in every 10,000 children under 8-years-old, while narrowly-definedASD affects 10-30 in every 10,000children11. These estimates “makeautism spectrum disorders far more common than was previously recognised”12.

THE CURRENT SITUATION AND ITS CAUSES

0

10

20

30

40

50

60

1975 1979 1983 1987 1991 1995 1999 2003

75+

65–74

45–64

16–44

5–15

0–4

Figure 2.2: Percentage of the UK population who reportedlimiting longstanding illness or disability by age

Source: ONS (2004) Living in Britain: Results from the 2002 General Household Surve

10British Artificial Nutrition Survey (2004) ‘Trends in artificial nutrition support in the UKbetween 1996 and 2002’.

11Medical Research Council (2001) ‘MRC Review of Autism Research: Epidemiologyand Causes’.

12MRC (2001).


Patterns of impairment differbetween disabled adults and children

Definitions of disabled peopletypically cover people with a widerange of impairments and ill health.As Section 1.4 has observed, this isone reason why the population of disabled people is so diverse. In addition to wheelchair users,blind people and Deaf people,the population of disabled peoplecan include people with long-termprogressive conditions such as

Multiple Sclerosis, HIV /AIDS orcancer from the point at whichadverse effects emerge13, as well as people with impairments as wide-ranging as back pain,depression and heart conditions.

Disabled young people have adifferent impairment profile fromadults – they are more likely to havea learning difficulty, and initial onsetof mental health problems oftenoccurs in young adulthood14.

men women

600000 400000 200000 0 200000 400000 600000

Back or Neck

Heart, Blood Pressure or Circulation

Legs or feet

Chest, breathing problems

Other

Diabetes

Arms, h&s

Depression, bad nerves

Stomach, liver, kidney, digestion

Progressive illness n.e.c.

Learning difficulties

Mental illness, phobia, panics

Difficulty in seeing

Epilepsy

Skin conditions, allergies

Difficulty in hearing

16-2425-3940-4950 to 59/64

Figure 2.3: Number of disabled adults by gender, age and impairment, GB

Source: Annual Local Area Labour Force Survey 2001–02

13The Government has announced that the new Disability Discrimination Bill will bringthose who have progressive conditions, but who do not yet experience significantimpairment within the scope of the DDA. The Government will also use the bill to removethe requirement that a mental illness must be “clinically well recognized” before it cancount as an impairment.

14SEU (2004) Mental health and social exclusion. The Stationery Office. Young Minds foundbetween one in four and one in five young people experience mental health problems by age 16.

37

For disabled adults, the pattern ofimpairment is broadly similar acrossgender. The most commonlyreported impairments for both menand women are problems of theback or neck, the heart orcirculation, legs or feet or breathing problems.

A higher proportion of womenreport depression or ‘other’impairments. Fewer women thanmen report problems with theirheart, blood pressure or circulation,diabetes, or report chest orbreathing problems. For mostimpairments the prevalenceincreases with age – though menwith learning difficulties are morelikely to be in younger age groups,

and men with depression or mentalillness are most likely to be in the25–39 age group15.

The disabled population is changing.Among adults, trends in impairmentshow that an increasing number ofpeople report mental illness andbehavioural disorders, while thenumber of people reporting physicalimpairments is decreasing16.

The prevalence of impairmentdiffers across ethnic groups

Black and minority ethnic (BME)groups are less likely to reportimpairment than the whitepopulation. Differences in agestructure account for much of this


0

5

10

15

20

25

30

UK

Pop

ulat

ion

Whi

te: B

ritis

h

Whi

te: I

rish

Whi

te: O

ther

Whi

te

Whi

te a

nd B

lack

Car

ibbe

an

Whi

te a

nd B

lack

Afr

ican

Whi

te a

nd A

sian

Oth

er M

ixed

Indi

an

Paki

stan

i

Bang

lade

shi

Chi

nese

Oth

er A

sian

Blac

k C

arib

bean

Blac

k A

fric

an

Oth

er B

lack

Oth

er E

thni

c G

roup

Lowerprevalence than whitepopulation*

Figure 2.4: Percentage of people reporting a limiting long-termillness in England and Wales by ethnic group

Source: Census 2001, ONS* Statistically significant difference from the white British population after controlling for age.

15Annual Local Area Labour Force Survey 2001–02.16DWP (2003) Incapacity Benefits dataset, 5%.


variation in prevalence, as in the UK BME groups tend to have ayounger population structure. But even after controlling for thisage effect, people of Indian,Pakistani, Bangladeshi and Chineseorigin remain less likely to reportthat they are disabled. These lowerrates may be influenced by culturaldifferences in self-reporting acrossethnic groups17.

Despite the lower levels of reportedimpairments, evidence suggests thatdisabled people of BME origin aremore likely to experiencedisadvantage18. Families from BME

groups with disabled children have a lower take-up of services, andoften feel less informed or able toaccess the system. People from BMEgroups tend to present to mentalhealth services later, sometimesfollowing contact with the criminaljustice system. They may experiencediscrimination both on grounds of health status and ethnicity inseeking employment. A highproportion of the BME populationlives in deprived areas and fall intodisadvantaged groups – where ahigher incidence of impairmentwould be expected19.

-0.02

-0.015

-0.01

-0.005

0

0.005

0.01

0.015

Mer

seys

ide

Tyne

& W

ear

Wal

es

W M

ids

urba

n

Rest

of

Nor

th

Inne

r Lo

ndon

Wes

t Yo

rks.

Rest

of

W M

idla

nd

Rest

of

York

s &

Hum

b

Out

er L

ondo

n

Sout

h Yo

rks

Scot

land

Sout

h W

est

E A

nglia

Rest

of

SE

E M

ids

Rest

of

NW

Gtr

Man

ches

ter

Statistically lower riskthan Merseyside

Figure 2.5: Variation in the risk of becoming disabled by region,controlling for age, employment status and occupation

Source: Burchardt (2003) using BHPS. Risk is given relative to Merseyside.The arrow indicates the average risk of a person within that region becoming disabled inany one year, the length of the line indicates the 95% confidence intervals.

17There is some difference in prevalence of specific impairments across ethnic groups,however sample sizes are too small for such differences to be reported in any meaningful way.

18Mental Health and Social Exclusion (2004) Social Exclusion Unit.19Some of these issues are explored in Annex F to this document.

39

There are some regional differencesin the prevalence of disability

Regional differences in the risk ofbecoming disabled do exist, butthese do not show a systematicpattern. Links with regional de-industrialisation are not clear, as areas such as Merseyside showhigh risks of onset of impairmentand/or ill health while the risk innearby Greater Manchester issignificantly lower.

The population of disabled people is distinct from the populationclaiming disability-related benefits

3.08 million people claim some formof disability-related benefit20,21.There are a number of differentbenefits, both specific and generic,that disabled people may receive.This report is primarily aboutdisabled people, rather than thoseclaiming disability-related benefits.There are significant overlapsbetween these two groups, butthere are also significant differences.


20DWP (2004) Client Group Analysis.21“Disability-related benefit” here refers to any benefit received because the individual has

an impairment. “Incapacity-related benefits” are a subset of disability-related benefits,and refer to any income replacement benefit that someone with an impairment receivesbecause of their impairment – specifically this includes incapacity benefit (IB) payments,incapacity benefit credits, income support (IS) on the grounds of incapacity and severedisablement allowance (SDA).

Extra costs benefitsHelp with the disability-relatedextra costs of severely disabledpeople

Earnings replacement benefitsProvide an income for people whoare not in work

Means-tested benefits and tax credits(i) provide a minimum incomelevel;(ii) help low income people withhousing costs+ additional premiums fordisabled people

Compensatory benefitsCompensate people who becamedisabled as a result of militaryservice or their employment

• Disability Living Allowance (DLA)• Attendance Allowance

(over SPA)

• Jobseeker’s Allowance (JSA)• Incapacity Benefit (IB)• Severe Disablement Allowance

(now subsumed into IB)

• Income Support (IS)• Working Tax Credit• Disabled child element of Child

Tax Credit• Housing Benefit• Council Tax Benefit

• War Disablement Pension • Industrial Injuries Disability

Benefit

Table 2.1: Types of benefits and tax credits for disabled people


In particular, in consideringemployment, the primary focus hereis on disabled people who are out ofwork. Many of these people – butnot all – are claiming incapacity-related benefits. And many peopleclaiming incapacity-related benefitswould not consider themselves to be disabled. Unfortunately theavailable data does not always allow us to differentiate betweenthese groups.

There has been a significant growth in government spending on disability benefits over the last 20 years

The number of incapacity-relatedbenefit claimants has tripled since197923. Currently 2.7 million peopleof working age claim incapacity-related benefits compared with 0.8 million JSA claimants, and 0.8 million lone parents receivingincome support.

SDA+IS0.19M

SDA only0.01M

Severely disabled 1.8M(Higher level DLA istargeted at this severitylevel)

SDA+DLA 0.23M

Moderately disabled 1.8M (Lower level DLAis targeted at this severity level)

Low level ofdisability4.9M

Notdisabled

34.3MDLA only0.30M

DLA + IS0.67M

IS only0.05M

IB+IS1.08M

IB only0.82M

IB+DLA0.92M

Total Claimants for each type ofdisability related benefit

IB (Incapacity Benefit) 2.40MSDA (Severe Disablement 0.26M Allowance)IS (Income Support) 1.38MDLA (Disability Living 1.64M Allowance)

All incapacity related 2.70M(IB, SDA or IS)All disability related 3.08M(IB, SDA, IS or DLA)

Figure 2.6: GB adult population by impairment severity (1996/97)and benefit receipt (2004)22

Note: Data on numbers of people claiming three or more benefits is unavailable. This figure is a stylized picture of benefit recipiency against the total disabled population. It is not drawn to scale.

Source: Family Resources Survey – Disability follow-up, 1996/97 and DWP (2004) ClientGroup Analysis.

22The most recent available data on severity is from the Family Resources Survey Disabilityfollow-up in 1996/97(all adults are included, including those over pension age). This tellsus that 58% of disabled people experience a low-level impairment and 21% have amoderate impairment.

23This excludes IB short-term lower cases.

41

Government spending on disabilitybenefits has increased in real termsover the last 10 years, and currentlystands at £29.5 billion (2004/05prices). This is due primarily to anincrease in the numbers of peoplereceiving disability living allowanceand income support (with adisability premium). Spending onincapacity benefit has been fallingsince 1994/95, reflecting a fall innumbers receiving the benefit.

2.2 Disability is linked to lifechances

Box 2.1: The reality of being a disabled person in 21st century Britain

A young man developed MultipleSclerosis and as a result lost hisjob, his wife and his dignity.Someone was sent to get him out of bed at 10am, and to puthim back to bed at 6pm – just sothat they could fit in with thelocal authority carers’ rota. Hetried moving into a long-termresidential home, but was very unhappy24.

One father of two severelydisabled children said, “I’ve had


0

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/95

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/01

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/02

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/03

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/04

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/05

Spen

ding

(£bn

)

Other

Severe Disablement Allowance

Disability Living Allowance

Attendance Allowance

Income Support for sick/disabled people

Incapacity Benefit

Source: Disability and Carers Directorate, DWP

Note: figure reports expenditure on working age and pensioner client group (and DLA

paid to severely disabled children)

Figure 2.7: Real spending on disability benefits (2004/05 prices)

Source: DWP (2004).

Note: ‘Other’ is Industrial Injuries Benefit and Payments to short and long-term sick anddisabled people of: Community Charge/Council Tax Benefit, Housing Benefit andDiscretionary Housing Payments and Income Support for under-60s excluding unemployedpeople. War disablement pension is excluded as consistent data is unavailable. Tax Creditsare also excluded.

24 Source: SU consultation with disabled people and parents of disabled children


to put work on hold, which isabsolutely crazy… I haven’t hadtime to generate the business. Ifwe had the right level of care, Iwould be out there running mybusiness, employing people,paying tax25.”

Susan’s son, David, was diagnosedwith Autistic Spectrum Disorderwhen he was three years’ old.Susan had to wait for four monthsafter the diagnosis before she wasgiven any information, orcontacted by any services. Susanfound it difficult to get hold ofinformation, and, when she did,there was no-one available to talkit through with her26.

Disabled people are doing less well than non-disabled peopleacross a wide range of indicatorsand opportunities

Disabled people are more likely to achieve lower employmentoutcomes

Disabled people are less likely to be employed and more likely to be economically inactive27 than non-disabled people. Only one intwo disabled people of working age are currently in employmentcompared to four out of five non-disabled people28.

The employment rate of disabledpeople is less than that of any otherdisadvantaged groups such as loneparents and black and minorityethnic groups29.

Employment rates are much lowerfor disabled men between 40 andState Pension Age than disabledwomen of similar ages. Employmentrates are also especially low forsome groups of disabled people,such as those with mental healthproblems and learning difficulties30.

Employment is beneficial for people.Not only does it provide financialbenefits but it also boosts self-esteem, the opportunity to develop,socialise and build social networks.Employment provides people with a sense of dignity, self-worth andpurpose. Disabled people out ofemployment may therefore lackthese benefits.

Unemployment leaves permanentscars on individuals both financiallyand psychologically. A period ofunemployment is found to reducewages by about 6% on re-entry tothe labour market in Britain, andafter three years, individuals whoreturn to work are earning 14% less than they would have receivedin the absence of unemployment31.There is also a strong relationshipbetween unemployment and

25 The Times, 29th June 200426 Source: SU consultation with disabled people and parents of disabled children27 ‘Economic inactivity’ describes people who are not in the labour market. People who are

economically inactive are neither in work nor seeking employment.28 Labour Force Survey 2002. 29 Labour Force Survey 2002.30 The employment rates for those with learning difficulties percentages presented in the

Labour Force Survey are far too small to be reported in a meaningful way.31 Arulampalam, W (2001) “Is unemployment really scarring? Effects of unemployment

experiences on wages”, The Economic Journal, Vol 111 585–606.

43

worsening mental health, and illhealth in general leading topremature death32.

Patterns across employment fordisabled people are mirrored bypatterns across economic inactivity

Despite the strong economy andimproving labour market conditionssince 1998, there has been anincrease in the number ofeconomically inactive peoplereporting a disability.

Currently, nearly half of all disabledpeople of working age areeconomically inactive compared with15% of non-disabled people. If wewanted to increase the employment

rate of disabled people up to thecurrent national average we wouldneed to get almost 1.8 million moredisabled people into work.

There are particular concerns aroundlabour market inactivity amongstdisabled young people. Disabledyoung people are considerably morelikely than non-disabled people tobe not in education, employment ortraining (NEET), particularly fromage 19 when many will first transferout of special school.

Levels of economic inactivity amongdisabled people vary with theseverity of impairment. Half of thosewith middle severity rates report


0

10

20

30

40

50

60

70

80

1972-76 1979-81 1982-86 1987-91 1992-96 1997-99 2000-01 2002

Year

Perc

enta

ge (%

)

25-54 LLSI 25-54 LHPD 55-64 LLSI 55-64 LHPD

Figure 2.8: Inactivity Rates among Men (%) by age with alimiting long-standing illness or a limiting health problem or disability 1972–2002

Source: Faggio and Nickell (2003); LLSI is a limiting long–standing illness. LHPD is a limitinghealth problem or disability.

32 Bartley, M (1994) “Unemployment and ill health: Understanding the relationships”, Journal of Epidemiology and Community Health, Vol 48 333–337.


0.0

0.5

1.0

1.5

2.0

Dis

able

d

Low

est

Qua

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d

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Pare

nts

Are

a of

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oym

ent

depr

ivat

ion

Ove

r 50

s

Ethn

icM

inor

ities

mill

ions

Figure 2.9: Employment growth needed to reach current overallUK employment rate

Source: HMT (2003) Full employment in every region. There are substantial overlapsbetween the different groups.

0

5

10

15

20

25

30

16 year olds 17 year olds 18 year olds 19 year olds

no disability or health

problem

disability or health

problem

Figure 2.10: Percentage of young people not in education,training or employment, by age and whether they have adisability or health problem

Source: The Youth Cohort Study (YCS) (2003) Cohort 10, Sweep 4.

that they are permanently unable towork. In the age group 50–64, themajority of disabled men – eventhose who are moderately disabled– report that they are permanently

unable to work. A larger proportionof disabled women across allseverities report themselves to beavailable but not looking for work.

45

Many disabled people experiencemultiple disadvantage

There are proportionately moredisabled people who are older,

from poor social backgrounds and with lower levels of qualificationsand skills.


0% 20% 40% 60% 80% 100%

9-10

7-8

5-6

3-4

1-2 Working

Looking for work

Intending to look buttemporarily ill

Available, not looking

FT education/ training

Permanently unable towork

incr

easi

ngly

sev

ere

Figure 2.11: Economic activity of men under 50 by severity category

0% 20% 40% 60% 80% 100%

9-10

7-8

5-6

3-4

1-2 Working

Looking for work

Intending to look buttemporarily ill

Available, not looking

FT education/training

Permanently unable towork

incr

easi

ngly

sev

ere

Figure 2.12: Economic activity of men aged 50–64 by severity category

Source: Grundy, E, Ahlburg, D, Ali, M, Breeze, E and Sloggett, A (1999) “Disability in GreatBritain: Results from the 1996-97 Disability Follow-up to the Family Resources Survey”,Department of Social Security, Research Report 94.


Disabled people are more likely to live on lower incomes than non-disabled people

The income of disabled people is, on average, less than half that ofnon-disabled people. Even afterdirect taxes and benefit paymentshave been accounted for – disabledpeople still earn 30% less than non-disabled people33. At the sametime, the experience of impairmentand disabling barriers can mean that disabled people have increasedcosts compared with their non-disabled peers.

Disabled people are more likely tolive in poverty. 27% of individuals in households with one or more

disabled adults of working age haveincomes below 60% of medianincome, compared with 20% ofindividuals in households with nodisabled adults34. Among worklesshouseholds with children themajority have at least one disabledparent: children are more likely toexperience poverty if there aredisabled adults in their family35.

Families of disabled children aremore likely to live in poverty.

Twenty nine per cent of people witha disabled child in the householdlive in poverty, compared with 21%of households with no disabledchildren36. Mothers of disabledchildren are seven times less likely

9.67.2

25.5

41.6

25.1

0

5

10

15

20

25

30

35

40

45

Ethnic

Minority50+ None of theseLone

ParentNo

Qualification

% o

f di

sabl

ed p

eopl

e

Figure 2.13: Percentage of disabled people who experience someother form of labour market disadvantage

Source: DWP using Labour Force Survey (2002), unpublished.

33 Bardasi, E., S.P. Jenkins and J. Rigg (2000), “Disability, work and income: a British perspective”, Working Paper No. 2000-36, Institute for Social and Economic Research.

34 DWP (2003) “Households Below Average Income”.35 Stickland, H. (2003) Disabled Parents and Employment. Background paper for the

HMT/DWP Seminar held on 23 November 2003.36 DWP (2003) “Households Below Average Income”.

47

than mothers with non-disabledchildren to be able to get work,mainly because of a lack of childcare37.

There are about 17,000 families inthe UK with more than one disabledchild and about 6,500 families withtwo or more severely disabledchildren. This is equivalent to wellover 10,000 severely disabledchildren who live in a family withanother severely disabled child38.Research shows that these familiesare more likely to be single parent,unemployed, on income support, in semi-skilled or unskilled manualjobs and less likely to own their own home39.

Disabled people are more likely tohave no educational qualifications,

and less likely to have advancedqualifications

Education is a key driver ofopportunity. High levels ofeducation lead to higheremployment and income levels and also to better social networksand improved life satisfaction. Low levels of education areassociated with the opposite –increasing the probability thatdisabled people will experiencepoverty and social exclusion.

Disabled people may facediscrimination and are more likely to be victims of hate crime and harassment

One in four disabled people haveexperienced hate crime or


37 3% of mothers with disabled children work full time, compared with 22% of motherswith non-disabled children (Family Fund Trust (2002) and General Household Survey(2002)) and 35% of non-working lone parents have disabled children (Daycare Trust(2001) Bridging the gap).

38 Joseph Rowntree Foundation (1998) The number and characteristics of families withmore than one disabled child. Based on Family Fund figures.

39 Joseph Rowntree Foundation (1998).

0

5

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15

20

25

30

35

40

Bottomquintile

2nd quintile 3rd quintile 4th quintile 5th quintile

% o

f ch

ildre

n

1 or moredisabledchildren

No disabledchildren

Figure 2.14: Quintile distribution of income for households withand without disabled children

Source: Households Below Average Income (2003).


harassment40, rising to 47% of people with mental healthconditions41. Eight in tenrespondents to the Social ExclusionUnit’s “mental health and socialexclusion” written consultation

reported stigma and discriminationto be the main driver of socialexclusion. The majority of non-disabled people agree that disabledpeople do not have full equalitywith non-disabled people42, and thatdisabled people face prejudice43.

01020304050

Physical/Sensory

Impairment

Mental illness Not Disabled

perc

enta

ge

16-24

25-39

40-49

50 to59/64

Figure 2.15: Proportion of people with no qualifications (%) by impairment 2001–02

Source: Annual Local Area Labour Force Survey 2001 – 02.

0

10

20

30

40

50

Physical/Sensory

Mental illness Not Disabled

perc

enta

ge

16-24

25-39

40-49

50 to59/64

Figure 2.16: Proportion of people with advanced qualifications(A-levels or higher) by impairment 2001–02

Source: Annual Local Area Labour Force Survey 2001–02.

40 DRC (2003).41 Mind (2003).42 DRC (2003).43 Eurobaromter (2001).

49

Disabled people often experienceproblems with housing and with transport

The economic disadvantagesexperienced by disabled peoplemake it difficult for them to meettheir housing needs through eitherbuying or privately renting property.This increases dependency on socialhousing44. Between 1997 and 2003there has been a 44% increase inthe number of homeless householdsin priority need because a household member has a physicalimpairment, and a 77% increase in the number of households wherethe priority need is someone with a mental illness45.

Much of the housing stock isphysically unsuitable for people withmobility or other impairments.These physical barriers do not just

affect people with mobilityimpairments. People with a widerange of conditions (asthma, heartconditions, mental health problems,and so on) can find that inadequateand inappropriate housing makestheir condition worse.

Disabled people therefore oftenneed alterations to housing whichincur costs over and above that ofnon-disabled people. According to a survey of housing in England in2000, a total of 181,000 householdscontain people ‘with a seriousmedical condition or disability’whose accommodation is notsuitable for them46. Twenty-sevenper cent said they could not affordto do these alterations and another13% said they could not get a grant.83,000 households were in theprocess of trying to move tosomewhere more suitable47.


44 ODPM (2003) Housing in England 2002/3, the Stationery Office.45 ODPM (2004) English Survey of Housing.46 ODPM (2004) English Survey of Housing.47 Unpublished DWP paper.

0

10

20

30

40

50

0-15 16-24 25-44 45-64 65-74 75-84 85 andover

% li

ving

in u

nsui

tabl

e ac

com

odat

ion

Figure 2.17: Percentage of disabled people living in unsuitable accommodation

Source: ODPM (2003) Housing in England 2001/2.


Disabled people living in theprivately rented sector were mostlikely to be living in housingunsuited to their needs, whileowner-occupiers were most likely to report their housing was suitable.

Difficulties in accessing transport area key component of wider socialexclusion48. Disabled people travel a third less often than the generalpublic49 and over a third of thosewho do travel experiencedifficulties, the most common beinggetting on or off trains or buses50.

As a result of economicdisadvantage, disabled people aredisproportionately reliant on anaffordable, accessible publictransport system. However, peoplewith physical and/or sensoryimpairments experience an unequalaccess to public transport as a resultof a failure in the past to take theiraccess needs into account whendesigning and building currentprovision. Significant physicalbarriers still exist but accessiblepublic transport is being rolled outprogressively and deadlines havebeen set by which all publictransport will be accessible. The rateat which accessible buses and trainsare coming into service varies

around the country. For example,while 90% of buses in London arenow accessible, the national averageis currently only around 30%51.

People with learning disabilities or mental health problems alsoexperience barriers to accessingtransport. If a person needssomeone else to accompany themon public transport this increases the cost. Negative attitudes andharassment are also reported to bekey barriers to getting out andabout52.

Poor outcomes are both a cause anda consequence of disability

For some disabled people, pooroutcomes arise after they becomedisabled. For example someone maybe unable to do their job followingthe onset of impairment, or a childmay receive poor education becausetheir special education needs are notappropriately supported. However inmany cases, the onset of impairmentis preceded by disadvantage.Evidence shows that low incomes,non-employment, and loweducation all independently increasethe probability of someonebecoming disabled53.

48 Social Exclusion Unit (2003) Making the Connections: Transport and Social Exclusion, Social Exclusion Unit.

49 Disabled Persons’ Transport Advisory Committee (2002) Attitudes of disabled people towards public transport, DPTAC.

50 DWP (2002) ‘Disabled for life?’ attitudes towards and experiences of disability in Britain.51 Department for Transport (2003) Public Transport Statistics.52 Strategy Unit consultation.53 Burchardt, T (2003) “Being and Becoming: Social exclusion and the onset of disability”

Centre for the Analysis of Social Exclusion, London School of Economics CASE report 21and Jenkins and Rigg (2003).

51

Many of these risk factors areamenable to policy intervention.Often the onset of ill health ordisability deepens pre-existingdisadvantage.

2.3 The costs of disadvantageDisadvantage for disabled peoplehas cost implications for theindividual concerned, their families,the economy and wider society

Many of these costs can bequantified. For example, if disabledpeople had the same qualificationsas non-disabled people, their grossincome would be an estimated 9%

higher than its current level54.The average annual costs ofbringing up a disabled child arethree times greater than for a non-disabled child55, and there issignificant variation within thataverage. However, just as important,are some of the intangible costs ofthis disadvantage.


54 Annual Local Area LFS (2001/02) and Dearden (1998) Ability, Families, Education and Earnings in Britain, IFS Working paper 98/14.

55 Gordon et al. (2000).

0

1

2

3

4

Bottom 2nd 3rd 4th Top

Income quintile

Prob

abili

ty o

f be

com

ing

disa

bled

%

per

yea

rFigure 2.18: Probability of becoming disabled in any one year, by income quintile

Source: Burchardt (2003).


Tangible Costs Intangible Costs

To disabled people Forgone income net of taxes

Loss of quality of life

Loss of self-esteem

To friends and relatives Loss of private incomenet of tax if caring fordisabled person

Loss of social life

Pressure/anxiety

To the economy andwider society

Replacement workertraining and hiringcosts

Output losses due to:

• short/long-termabsenteeism formental and physicaldisability

• premature mortality• reduced

employment; andreduced employeeefficiency.

Reduced labour marketflexibility

Lost benefits of havinga diverse workforce

Table 2.2: Costs of high rates of economic inactivity amongst disabled people


Summary

There are strong grounds for government action to improve the lifechances of disabled people. Supporting and empowering disabled peopleto help themselves will improve their participation and inclusion in thecommunity, in the labour market and in wider society. This will deliversocial and economic benefits for all of society – and all of society needsto be involved.

This report sets out an ambitious vision for improving the life chances of disabled people.

By 2025, disabled people in Britain should have full opportunities andchoices to improve their quality of life, and will be respected andincluded as equal members of society.

This ambitious goal will require a step-change in the way we deal withthe disadvantage faced by disabled people. This report sets out a radicallong-term strategy to achieve this step-change, building on theconsiderable progress that has already been made.

Four key goals have been identified in this report as the most importantdeterminants of disabled people’s life chances:

• empowered citizens with choice and control over how additional needs are met;

• support for families with young disabled children;• smooth transition into all aspects of adulthood; and• improved employability.

In each of these areas, the Government’s strategy for achieving the visionis based on:

• removing barriers to inclusion;• meeting individual needs; and• empowering people.

Chaper 3: Vision and strategy


This chapter sets out how and whygovernment should address theproblems identified in Chapter 2 to improve the life chances ofdisabled people. Section 3.1 sets out the vision which governmentwants to achieve. Section 3.2describes what society needs to looklike to achieve the vision. The different rights and respons-ibilities of groups in society are setout in Section 3.3. Section 3.4explains why governmentintervention is justified, and Section 3.5 follows by outlining the characteristics of successfulgovernment action to improve thelife chances of disabled people.Finally, Section 3.6 sets out thewider context in which the report is based and specific issues that will need to be addressed to achievethe vision.

3.1 What outcomes doesgovernment want to achieve?A step change is needed to improvethe life chances of disabled people

The previous chapter has set out the current situation facing disabledpeople in the UK. The scale of thechallenge is significant and needs a radical, long-term strategy forchange if the situation is to improve.

This action will be building on goodprogress that has already beenmade since 1997 in legislation and in wider policy. But furtherimprovements are needed inattitudes towards disabled peopleand in the opportunities and choicesthat disabled people have in their

lives. Many disabled people still havea poor quality of life, and are toooften rendered dependent onbenefits and care services by theattitudes and approaches of others.This lack of independenceundermines disabled people’sequality and rights as citizens.Sometimes this is a result of directdiscrimination, including harassmentand hate crime. More insidious isindirect discrimination, includinginstitutional cultures that assumedisabled people have less to offerthan non-disabled people, or whichfail to include disabled people.

This report sets out an ambitious vision

This report sets out an ambitiousvision that government should strivefor over the next 20 years. Itprovides an overarching goal toinform all government action withrespect to disabled people, toimprove their life chances andtherefore their quality of life.

Box 3.1 The Government’s vision

By 2025, disabled people in Britainshould have full opportunities and choices to improve theirquality of life, and will berespected and included as equalmembers of society.

This vision reflects the fact thatthere should be equality ofopportunity for all people,irrespective of their needs. Different people will need differentlevels of support to access theseopportunities, but the overall aim


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VISION GOALS POLICY OBJECTIVES STRATEGY


should be for disabled people to be able to take up opportunities to improve their own quality of life in a way that is comparable withnon-disabled people.

The vision also reflects the basicright of disabled people to berespected as equal citizens and to beincluded in British society along withtheir non-disabled peers.

It is also important to note thatwider aims set out by government –including reducing healthinequalities, child poverty andgender inequality – would beundermined by a failure to addressdisability equality.

The diagram on the previous pagesets out the overall vision and howthis can be achieved through goals,policy objectives and an overallstrategy that will inform theimplementation process.

3.2 What does society need tolook like to deliver this vision?There needs to be a shift inattitudes – both towards disabled people and by disabledpeople themselves

A significant barrier at the momentis negative attitudes towardsdisabled people, which can betransmitted either knowingly orunknowingly, directly or indirectly.These attitudes tend to cast disabledpeople as needing care or control,

or as lesser human beings who donot fit into ‘normal’ society.

In order to deliver the visiondescribed in Section 3.1, thesenegative attitudes – which onereport has labelled ‘disabilism’56 –need to be replaced by arecognition of disabled people asfull citizens and as equals to non-disabled people.57 The media has an important role to play in thisprocess, for example by representingdisabled people as citizens capableof leading interesting and fulfillinglives, and contributing to society.

There also needs to be a betterunderstanding of disability andimpairment in society, so thatpeople understand what disability is,in particular the role of barriers inperpetuating exclusion. To addressmultiple sources of disadvantage,progress will also need to be madein attitudes on other diversity issuesincluding gender, race, age andsexuality, which can be experiencedby both disabled people and non-disabled people58.

Box 3.2: The scope and nature ofdiscriminatory attitudes

Negative attitudes towardsdisabled people can stem from arange of sources includingignorance, lack of experience, andfear. They can occur at theindividual or collective level, eitherdirectly or indirectly. Personaldiscrimination includes avoiding

56 Demos (2004) Disablism: How to tackle the last prejudice.57 See the Scope Time to get equal campaign (www.timetogetequal.org.uk). 58 See Social Exclusion Unit (2004) “Breaking the Cycle: taking stock of progress

and priorities for the future”.

57

interaction with an individual orgiving an individual differenttreatment. Discrimination can alsobe collective, such as usingderogatory terms about disabilityor portraying negative orinaccurate images of disabledpeople in the media. Collectivediscrimination can be institutionalor cultural.

The following polling dataindicates the current level andscope of discrimination.

• 21% of disabled respondentsexperienced harassment inpublic in relation to theirimpairment (DRC, 2003).

• In a Scottish survey of disabledpeople, almost half hadexperienced verbal abuse,intimidation and /or physicalattacks because of theirimpairment. Almost a third ofrespondents were experiencingattacks at least once a monththat were most likely to be fromstrangers and in public placessuch as the street and publictransport (DRC and CapabilityScotland, 2004).

• 49% of respondents with mentalhealth conditions had beenharassed or attacked, and 26%had been forced to move homebecause of harassment linked totheir mental health condition(Read and Baker, 1996).

• 17% of disabled respondentssaid they had experienced actualdiscrimination in the workplacebecause of their disability (DWPAttitudes and Awareness, 2002).

Any shift in attitudes must alsoinvolve disabled people and theirfamilies. This group can have lowerself-esteem and aspirations, often as a result of direct negativeexperiences of discrimination andbarriers. They are also members ofsociety, and are therefore exposedto wider societal attitudes andexpectations articulated through the media and other forums. A change in attitudes towardsdisabled people will empowerindividuals and their families to take up opportunities and choices to improve their life chances, withthe appropriate support.

Disabled people need to beintegrated into society and theirneeds fully taken into account

Society has come a long way withrespect to gender and ethnicityissues, although there is still muchprogress to be made. However,recognition of disability issuesarguably lags behind in terms of the extent to which it isincorporated into the structures of business, government and wider society.



Box 3.3: The diversity agenda:disability, race and gender

As highlighted in Section 3.2, thewider diversity agenda seeks toaddress the disadvantage anddiscrimination faced by a range ofgroups, including discriminationon the grounds of race, ethnicity,gender, sexual orientation, ageand religion. There is muchcommon ground between thesegroups in terms of the nature andimpacts of discrimination andexclusion. And disadvantage canbe compounded by the multipleaspects of identity.

However, the basis of civil rightsbetween groups is somewhatdifferent. The Race Relations Act1976 and the Sex DiscriminationAct 1975 seek to make sure thatdifferent groups of people aretreated equally in order to achieveequal outcomes. But, the DisabilityDiscrimination Act 1995 requiresemployers and others to treatdisabled people differently toreduce their barriers toparticipating in society and toachieve equality of outcomes fordisabled and non-disabled people.This is equivalent to requiringpositive treatment of disabledpeople in some contexts.

The Commission for Equality andHuman Rights will bring togetherthe current equality Commissionsin a single body that will takeresponsibility for new laws on age,religion or belief and sexual

orientation, and for the first timeprovide institutional support forhuman rights.

For the vision in Section 3.1 to beachieved it will be necessary fordisability issues to be incorporatedas an integral component of theway in which all of society goesabout its activity. The DisabilityDiscrimination Bill public sector duty(Box 3.4) is intended to promote thisprocess within the public sector.

Increasing the employment rateamong disabled people will helppromote social inclusion and shouldalso reduce negative attitudes fromothers. For those who cannotrealistically participate in the labourmarket, resources should be directedto enabling their inclusion in theirlocal communities. The long-termaim is that disabled peopleparticipate in society on the sameterms as non-disabled people.Mainstream policies and businessshould therefore be designed andimplemented to take account of theneeds of disabled people, alongsideall other citizens. This will requirewidespread sign-up to the netbenefits of ‘reasonable adjustments’as set out in the DDA.

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Box 3.4: The Public Sector Duty:promoting equality of opportunityfor disabled people

The Disability Discrimination Billwill introduce a positive duty onthe public sector to have dueregard, when carrying out itsfunctions, to the need to eliminateunlawful discrimination against,and harassment of disabledpeople, and to promote equality of opportunity fordisabled people.

There are ‘specific duties’ underthe duty to promote equality,including a requirement for aDisability Equality Scheme thatsets out:

• how disabled people have been involved in drawing up the scheme;

• how the public authority willassess the impact of existing andproposed policies and activitieson disabled people;

• the steps the public authoritywill take to improve outcomesfor disabled people;

• the way the public authority willgather evidence on whetheroutcomes are improving fordisabled people; and

• the way the public authoritywill use the evidence they have gathered.

The aim of the positive duty is forthe public sector to become anexemplary employer; responsive tothe needs of disabled peoplethrough its service delivery; and adriver for wider change through itsrelationships with contractors andits regulation of the private sector.

3.3 What are the rights andresponsibilities of the differentplayers?The delivery of societal change willrequire action by: the widercommunity including disabledindividuals; government; the widerpublic sector; employers; andproviders of goods and services.Without clarity on the rights, rolesand responsibilities needed toachieve the vision, different peopleor groups may duplicate effort, takeconflicting action, or simply donothing at all – and it will bedisabled people themselves who lose out.

• The rights of all citizens, includingdisabled people, are a mixture of codified rights and publicly-defined and politically-contestedvalues59.

• Alongside rights, it is widelyaccepted that people also have


59In addition to the legislation described in Chapter 1, the Human Rights Act (1998)guarantees the right to life, right to liberty, to privacy, to freedom from degradingtreatment, right to marry and found a family, and the right to education, subject tocompatibility with primary legislation; and the Scottish Executive, Northern IrelandAssembly, Welsh Assembly Government and the Greater London Authority all havepositive duties to promote equality.


responsibilities. These reflectspecific obligations set out in lawand also wider perceptions ofwhat citizenship means and thevalues that underpin it. Forexample, when a citizen receivespublic funds through certainwelfare payments, such as JobSeekers Allowance, it is widelyaccepted that the individual has a responsibility to take upopportunities for work ortraining60. These responsibilitiescan be implicit – reflecting socialnorms – or explicit through, forexample, conditions attached to benefits.

Common understandings of rightsand responsibilities change overtime and are contested in the publicrealm. This is demonstrated bycurrent debates on whether citizenshave a responsibility to maintain a healthy lifestyle. Individuals in particular roles – such as benefitsclaimants – can assume specific new responsibilities, based on a contractual-type relationshipbetween individual and state. The ability to meet responsibilitiesmay be affected by barriers, such as social barriers to taking upemployment. So, for responsibilitiesof disabled people – for example –to be met, barriers will need to betackled and support will need to beprovided to disabled people in theirroles as citizens, parents, employeesand so on.

In the context of disability, differentgroups within society need to

recognise their own rights andresponsibilities, so that progress canbe made towards achieving thevision. The following list illustratessome rights and responsibilities ofkey groups.

• Disabled people: have largely thesame rights and responsibilities as other citizens, with additionalrights set out in the DisabilityDiscrimination Act 1995 andSENDA 2001. Like other citizens, if a disabled person is in receipt of benefits or public services, they may have additionalresponsibilities, for example, to seek opportunities to take upemployment. Disabled people,alongside other citizens, also have a responsibility to informservice and benefits providers ofany relevant changes in theirpersonal circumstances.

• Employers: have specificresponsibilities including healthand safety provisions for all theiremployees. Employers also haveadditional DDA responsibilitiestowards potential or currentdisabled employees. Someemployers recognise a widerresponsibility to employees andsociety through corporate socialresponsibility.

• Service providers: Health andsocial care agencies have statutoryduties to meet additional needs.Providers of goods, services andfacilities have responsibilities notto discriminate against disabled

60Strategy Unit (2004) “Personal Responsibility and Changing Behaviour: the state ofknowledge and its implications for public policy”.

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people, including through making‘reasonable adjustments’ tophysical premises.

• Government and the wider publicsector: Local authorities have aduty to promote economic, socialand environmental well-being intheir area. They also have a dutytowards disabled people underSection 21 of the NationalAssistance Act 1948. Public bodies,under the Disability DiscriminationBill, are also likely to have a dutyto promote the equality ofdisabled people.

• Carers: are supported throughlocal authority powers to provideservices for people with caringresponsibilities. Many carers takeon informal support of disabledpeople close to them, such asfamily members, neighbours and others.

• Wider community: has a widelyrecognised responsibility to treatothers with dignity and respect.

3.4 What justifies governmentintervention to achieve theseoutcomes?Disabling barriers reduce lifechances, exclude disabled peopleand waste their talents and abilities

Disabling barriers – such asdiscrimination, the builtenvironment, and policy design –have a damaging effect on lifechances and lead to many disabledpeople living in poverty, socialexclusion and with low educational

outcomes. The result is that manydisabled people face social andeconomic marginalisation fromsociety. These poor outcomes fordisabled people create a high levelof inequity.

This matters for disabled peoplethemselves, as well as for carers andfamilies. It also matters for society asa whole, because we lose the talentand contribution of disabled people.The exclusion of disabled peoplefrom mainstream society also meansthat they participate less in publiclife and institutions. This meansfewer voices are being expressedand taken into account in thedemocratic process and in thecreation of the values and normsthat shape society.

Disabling barriers also impact oneconomic growth and productivity

With less than half of disabledpeople of working age inemployment, there is significantwastage of disabled people’spotential contribution to economicgrowth and productivity. The statusquo seeks to compensate disabledpeople for impairment and disablingbarriers, rather than supportingthem to improve their quality of life.As detailed in Chapter 2, this notonly costs the public purse inbenefits spend, it also reduces theeconomic and social contribution ofmany disabled people who could bebetter supported to participate inthe workplace, in their localcommunities and in societygenerally. Effective governmentaction to improve the life chances



of disabled people should in manycases deliver net economic benefits,and result in more efficient use ofpublic resources.

There are a number of reasons whythe vision would not be achievedwithout government intervention

Disabling barriers, which preventdisabled people from being fullyincluded in society, need to beactively addressed by government.Without action, existing behaviours,attitudes and structures willcontinue to marginalise disabledpeople. This should includegovernment leading by example,demonstrating positive attitudestowards disabled people, and beinga model employer.

At the same time, disabled peoplehave additional needs which may require support. The type of support required can vary. For example, personal assistance or support to perform daily activities,advocacy to make informeddecisions, adaptations to housing in order to live independently,interpreter or equipment to enable communication. The costs of meeting additional needs, particularly for those on lowerincomes, would be prohibitive ifborne by the individual alone.Government action reflects society’sresponsibility to make sure that allpeople are enabled to live withdignity and to participate in and contribute to their localcommunities.

Finally, government intervention can address market failures – such as discrimination against disabledpeople by employers and serviceproviders because of a lack ofinformation about their skills andabilities. These market failureswould continue without state action and undermine efficiency and social goals.

3.5 What does governmentneed to do to deliver on the vision?To achieve the vision, governmentneeds clear principles to inform allpolicymaking. These principlesshould feed into a strategy that is implemented through a coherent delivery process. All three components – policyprinciples, strategy and delivery –should be consistent and self-reinforcing.

Policy design needs to be inclusive,effective and informed

To ensure that policy design isconsistent with the overall visionand contributes directly to theachievement of the vision, policyshould be based on the followingthree principles.

Inclusive

• Disabled people to be enabled tocontribute to the life of their localcommunities and to societygenerally, supported by bothspecialist and mainstream policy.Disabled people’s needs should be

63

actively incorporated early onwithin all mainstream policydesign and delivery, alongsideother citizens.

Effective

• Disabled people should receiveindividualised responses to theiradditional requirements, to a highstandard, when they need them,for as long as they need them; sothat they are empowered asconsumers and citizens.

Informed

• Policy design and delivery shouldbe informed by disabled peoplethemselves, their experiences andpreferences. Disabled peopleshould be supported to makeinformed choices, through peeradvice and advocacy.

A soundly-based strategy will remove barriers, meetindividual needs and empowerdisabled people

Each of the principles above islinked to a component of thestrategy for long-term change. This strategy will inform the basisfor government intervention in thisarea and will focus action on themost critical areas.

Removing barriers: ensuring thatdisabling environments, attitudesand disproportionate social barriersare effectively removed. This will require:

• agreement on the barriers – in attitudes, policy, physicalenvironment, and communication– and shared ownership of the solutions.


POLICYPRINCIPLES

STRATEGY

DELIVERY

Inclusive Effective Informed

Removingbarriers

Meetingindividual

needs

Empoweringpeople

Designinginclusivesystems

Ensuring highperformance

Involvingdisabled people

Figure 3.2 Connections between the policy principles, strategyand delivery of the vision


Box 3.5: Removing barriers in practice

Inclusive design of products,services and environments canmean that people of all abilitiesand ages are able to use them in their everyday lives. Examplesinclude:

• accessibility audits of buildingsto improve mobility foreveryone from wheelchair usersto mothers pushing prams; and

• a big-button phone selling as amainstream product irrespectiveof visual impairment.

This process involves designers,manufacturers and serviceproviders actively considering thewidest possible audience for theirproducts and services. It promotesan inclusive society by removingbarriers through the design andproduction process61.

Meeting individual needs: providingfinancial and service-based supportto meet additional individual needswhere appropriate. This will require:

• assessment of need, identificationof available resources, andpersonalised responses to needwhich enable choice and control.

Box 3.6: Meeting individual needsin practice

Additional needs arising fromimpairments – such as healthprovision, equipment, therapyservices, and language support –should have personalisedresponses. This could meanpersonal assistance being providedat a time of day that enables aperson to go to work, or healthsupport through the ExpertPatient model that creates mutualsupport between the patient, their peers with similar needs andspecialist health support workers.These responses should bedeveloped with the individual andprovided in a way that enableschoice and control, and promotesthe principles of independenceand inclusion.

Empowering people: empowermentby and of disabled people, with anongoing opportunity to voiceconcerns and critical challenge. It will require:

• individual empowerment, raisedexpectations, democratic voice,meaningful choice and self-esteem– so that disabled people are ableto take up opportunities toimprove their life chances, and allstakeholders are expected tofacilitate this outcome.

Empowerment of disabled peoplewill be an important part of the newpublic sector duty on publicauthorities, through the process and outcomes of the DisabilityEquality Scheme.

61See www.inclusivedesign.org.uk for more information.

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Box 3.7: Empowering people in practice

Disability organisations anddisabled people should beinvolved early on in policy andservice development on asystematic basis. Essex CountyCouncil has an IndependentAdvocacy Service staffed largely by disabled people. This body isinvolved in policy-making at theCounty Council, including devisinga commissioning process thatpromotes equality of disabledpeople, and holds the Council toaccount on issues such as its targetfor employment of disabledpeople.

Those who work with disabledpeople and provide services shouldalso be encouraged to supportdisabled people in ways thatmaximise their independence andparticipation in community life.

Effective delivery will be essentialto securing improved outcomes

This strategy needs to be convertedinto a sound delivery process thatensures that the vision is achievedthrough tangible and specificactions. The delivery process will becoordinated by government but willneed others to take it forward atthe same time. This process isdescribed in detail in Chapter 8. It has three main parts, whichcorrespond to the principles andstrategy above.

• Designing inclusive systems.

• Ensuring high performance.

• Empowering people.

Any plans for governmentintervention need to take fullaccount of the possible costs of that intervention

Government intervention, in anyarea, can have a number ofconsequences that need to beanticipated through the regulatoryimpact process. Government needsto make sure that action it takes isbeneficial and better than nointervention at all or leaving thingsas they are. The recommendations inthis report have been subject to aninitial assessment of regulatoryimpact. As the recommendations are taken forward through theimplementation process, fullRegulatory Impact Assessments will need to be developed bygovernment departments. These will set out and assess the costs and benefits to different groupswithin society.

3.6 What wider issues willaffect progress towards the vision?Achieving the vision, goals andobjectives set out above, throughthe principles, strategy and deliverychannels, will involve toughdecisions. There may be trade-offsbetween certain benefits and costs,or decisions to be made about thesequencing of action.



There needs to be an effectiverelationship between social care andhealth care

Additional needs associated withimpairments mean that manydisabled people require supportfrom either or both the health caresystem and the social care system.However, these two systems arefounded on very different notions.Health care is based on the principleof ‘free at the point of use’ (withincome-related exceptions such aseye tests and prescriptions) whereassocial care uses cost-sharingprinciples. This can lead to situationswhere care services which appearvery similar to the individual can beadministered on very differentgrounds. For example, a wheelchaircould, in some circumstances, beargued to be a social care needrather than a health need, but isprovided free by the health service;while help with personal care athome could in some circumstancesbe argued to be a health need, butis provided by social care.

In developing an effective supportsystem based around individualneeds, whether these arepredominantly ‘health’ or ‘social’ in nature, this divide will need to bemanaged. Health Act flexibilitieshave already enabled better jointworking in some localities and forsome groups of people, but furtherwork needs to be done. Theforthcoming Green Paper on AdultSocial Care may address some ofthese issues.

Importantly for children and for life-long learners, the relationshipbetween social care and health carealso needs to interface successfullywith education. The follow-up tothe Green Paper “Every ChildMatters” is aiming to integratehealth, social care and educationservices around the needs ofchildren and their families toimprove outcomes.

There is a balance to be struckbetween mainstreaming andspecialist provision

As set out above, all policy deliveryand design should take disabledpeople’s needs into consideration, so that they are better able to accessmainstream services. There will alsobe circumstances in which disabledpeople require additional support inorder to access mainstream services;and where specialist support will berequired in order for disabledchildren and adults to be involved in their local communities and insociety generally. Specialist supportmay sometimes better promote thewell-being of a disabled person. The aim of both mainstream policyand specialist provision should bethat of social inclusion for disabledpeople of all ages.

There also needs to be a balancebetween national standards andlocal autonomy

There are difficult decisions to bemade on the degree to whichnational standards are set and thedegree of freedom which localbodies have to meet local priorities.

67

In the context of disability thismeans that once the vision andoverarching goals are agreed, therewill need to be decisions about the best way of achieving them. This may mean some combinationbetween enforceable nationalstandards coupled with clearsignalling of outcomes, so that localauthorities can make local decisionsthat best reflect local needs, whileworking towards the same goals and vision.

Government has agreed that thenumber of targets it sets should fall,to ensure a focus on a few clearnational priorities and to increaseflexibility for those at the front lineto respond to local priorities andcircumstances. For some priorities ofnational importance, minimumstandards should be set and wherepoor performance is identified,targeted inspection will helpauthorities identify key areas forimprovement. For those prioritiesthat are local, it must be localauthorities themselves to decide onthe most appropriate targets andmeans of achieving those targets.

Box 3.8: Local Public ServiceAgreements

Local Public Service Agreements(LPSAs) are being used by localauthorities to drive throughimproved outcomes at the locallevel, through joint workingbetween agencies to agreedoutcomes. Local authorities whosuccessfully meet their LPSAs are

rewarded through a PerformanceReward Grant from centralgovernment. Here are someexamples of innovative LPSAs thatare linked to disability issues.

Several local authorities –including Cumbria County Council,Luton Borough Council, NorthSomerset Council and PooleBorough Council – have LPSAs on improving the employmentrate of disabled people.

Shropshire County Council has anLPSA to increase the choice andcontrol and improve the generalquality of life for people withlearning disabilities.

Cheshire County Council has anLPSA to boost independence,choice and control by increasingthe take up of direct payments by adults, older people, disabledchildren and their carers.

Government resources will need to be targeted effectively

Some of the policy objectives can be achieved within existing budgets,including through efficiency savings.Other policy objectives may requirepump-priming resources to enableservice deliverers and others totransform their policy delivery to be consistent with the goals. This could be on an ‘invest-to-save’basis – so that spend in one areagenerates savings in another areaand/or over the longer term – orindeed to get better outcomes fromexisting spend.



There are other decisions onspending including the balancebetween spend at different points inthe life cycle and between differentgoals in the vision. Spend can alsobe allocated between differentlevels of need. The diagram above is a representation of the spread ofneeds within the population ofdisabled people.

This diagram is, necessarily,simplified. In reality, people mayhave specialist support needs incertain environments but none in

other places. Many disabled peopleneed a varying combination of bothmainstream and specialist provision.In addition, people with fluctuatingor deteriorating conditions maymove between the populationgroups over time.

Depending on the overall resourcesavailable and other priorities forgovernment spend, these decisionswill need to be taken based on thebest evidence available and in atransparent manner.

Low numbers of peoplewith high support needswho will require specialistinput to participate inmainstream society

Significant numbers ofpeople requiring mid-levelsupport in order toparticipate in mainstreamsociety. Some specialistinput

Large numbers ofpeople requiring lowlevels of support

Figure 3.3 Representation of different levels of needs in the population

69INDEPENDENT LIVING

Summary

Historically, disabled people have been treated as being dependent and in need of ‘care’, rather than being recognised as full citizens. This hasmeant that:

• responses to needs have often created dependency, rather thanpromoting independence and extending opportunity; and

• disabled people have been expected to fit into services, rather thanservices being personalised to respond to individual need.

A new approach to supporting disabled people is now needed, in linewith the Government’s new vision for adult social care. This should focuson the promotion of independent living. Independent living is not justabout being able to live in your own home – though that is often part ofit for many disabled people. Rather, independent living is about providingdisabled people with choice, empowerment and freedom.

The new approach should allocate available resources according toindividual needs, in the form of individualised budgets made transparentto the disabled person. Individuals should be able to choose whether theytake this in cash or services – either way, the budget should be used tosecure the appropriate type of support for the individual.

This new approach would require radical changes to the way in whichbudgets are organised and services are delivered. The options for a newsystem to deliver this approach should be piloted – and disabled peoplethemselves will need to be at the heart of these pilots.

In parallel, action should be taken in a number of other areas.

• Building capacity amongst disabled people and their organisations sothat they are empowered to influence policy and service delivery.

• Ensuring that disabled people are included in mainstream policy and services.

• Addressing the barriers disabled people experience in accessing housingand transport.

Chaper 4: Independent living


Section 4.1 of this chapter outlineswhat is meant by the term‘independent living’ and summarisesthe current situation. The keybarriers are detailed in Section 4.2and evidence of what works intackling these barriers is presentedin Section 4.3. The recommendationsfor change are described in Section4.4. The exact nature of the newsystem will need to be determinedthrough the piloting process. It willalso need to take account, inparallel, of issues that emerge fromthe consultation on the Green Paperon Adult Social Care.

4.1 What do we mean by“independent living”?

The Disability Rights Commission hasdefined independent living asreferring “to all disabled peoplehaving the same choice, control andfreedom as any other citizen – athome, at work, and as members of the community. This does notnecessarily mean disabled people'doing everything for themselves',but it does mean that any practicalassistance people need should be based on their own choices and aspirations62”.

Disabled people stress that, justbecause someone might needassistance to go about their dailylife, this does not mean they have to be ‘dependent’. Independencecomes from having choice and being

empowered regarding the assistanceneeded. Without this choice andempowerment, disabled people are unable to fulfil their roles andresponsibilities as citizens.

The philosophy accords with theGovernment’s new vision for adultsocial care and the debate that has underpinned the consultationleading to the forthcoming Green Paper.

Independent living is not just abouthaving choice and empowerment in personal care. For Deaf peopleand those with communicationimpairments, independent living is about interpreter and/orcommunication support. For peoplewith mental health support needs,advocacy is “a vital component ofindependent living. Mental healthservice users need advocacy support,just as people with serious physicalimpairments need personalassistance63”. People with learningdisabilities stress self-advocacy,which for them is about havingsupport to ‘speak up for ourselves’,something too often denied to this group of disabled people in particular64.

Indeed, there are many aspects ofpeople’s lives where the existence or absence of disabling barriers willdetermine whether they can beactive citizens. Housing suitable fortheir needs, transport, assistance

62Disability Rights Commission (2002) Policy Statement on Social care and IndependentLiving, DRC.

63Disability Rights Commission (2003) Coming Together: Mental health service users anddisability rights, DRC.

64Ward, L (1999) Innovations in Advocacy and Empowerment, Lisieux Hall Publications.

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and equipment to enable mobilityare just two important areas. So toois the provision of health care: awide range of health services canmake all the difference to whethersomeone can live independently,work, be a parent and participatein their local community.

Independent living is therefore animportant part of enabling disabledpeople to fulfil the roles andresponsibilities of citizenship.Its importance spans the full rangeof life experiences faced by disabledpeople, from early years andtransition to adulthood through to adult life and employment,extending into old age. While thischapter focuses on the coreelements needed to supportindependent living for disabledpeople covered by this report, theprinciples – and some of therecommendations – are equallyrelevant across chapters 5–7.

Some progress has been made insupporting independent living

While progress in recent yearsmeans that more disabled peopleare living in their own homes andare participating in society, there isstill a long way to go. Moreover,there are aspects of governmentpolicy which (unintentionally) createbarriers to disabled people’s visionof independent living.

Chapter 5 sets out the barriers facedby disabled children from an earlyage, while Chapter 6 summarisesevidence of the disadvantages

facing young disabled people asthey make the transition intoadulthood. These barriers can havelong-term consequences, leading tothe higher rates of unemploymentand poverty detailed in Chapter 7.But there are wider consequencestoo. There is now considerableevidence that people with physicaland/or sensory impairments,learning disabilities, or mentalhealth support needs are less likelythan their peers to experience the‘normal activities’ which aregenerally considered to be part ofan experience of social inclusion.These ‘normal activities’ are “tohave a reasonable living standard,to possess a degree of security, to be engaged in an activity which isvalued by others, to have somedecision-making power, and to beable to draw support fromimmediate family, friends and awider community65”.

Box 4.1: The current policy contextfor independent living

A number of current andforthcoming policy initiatives formpart of the context of this chapter.

• The national learning disabilitystrategy, Valuing People.

• National Service Framework on Long Term Conditions.

• National Service Framework on Mental Health.

• National Service Framework forChildren, Young People andMaternity Services.

INDEPENDENT LIVING

65Burchardt, Tania, Le Grand, Julian and Piachaud, David (1999) ‘Social exclusion in Britain1991–1995’ Social Policy and Administration, Vol 33, No 3, pp 227-244.


• Direct Payments Implementationprogramme.

• NHS programme for ChronicDisease Management.

• The Expert Patients Programme.

• Integrated CommunityEquipment Services.

• Supporting People programme.

• The public sector duty to beintroduced in the forthcomingDisability Discrimination Bill.

• Adult Social Care Strategy andforthcoming Green Paper.

• The Mental Capacity Bill

The Department of Health intendslater this year to carry out a majorconsultation on the future of adultsocial care. Many of the themes and issues raised in this chapter are central to this consultation. The emphasis will be on usingresources in ways which personaliseresponses to needs, maximise choice and control, and promoteindependence through earlierinterventions. Services need to beseamless, with partner agencies andprofessionals working to improvecoordination and accessibility. We expect that the Department ofHealth’s response to its consultationwill deal with many of the issuesthat are covered here. The outcomeof the consultation should set a newdirection for the delivery of socialcare, including to disabled people.

4.2 What are the key barriers?Two main barriers are evident across all aspects of disabledpeople’s lives – in where they live,their personal relationships, theiropportunities for education, training and employment; access to healthcare; access to leisureactivities; and participation in thelife of their local community and in wider society.

• The support which society makesavailable to people with a rangeof different impairments isgenerally not fitted to the person.Instead, disabled people areexpected to fit into services.Support is organised and deliveredaccording to different policy,professional and serviceboundaries, resulting inunnecessary bureaucracy, afragmentation of disabledpeople’s lives and often a failureto meet their needs adequately.

• Policies and practice do not payenough attention to enablingdisabled people to be activecitizens, or to supporting disabledpeople to help themselves. Thereis instead a focus on incapacity,inability or risk associated withimpairment or mental healthneeds. Responses to needs areoften more likely to createdependency than enable peopleto participate in their localcommunities, fulfil their familyresponsibilities or be economicallyindependent.

Within these broad categories, somespecific problems can be identified.

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Inappropriate assumptions underpin the legislative frameworkfor support

The Strategy Unit Expert Group on Independent Living stated thatindependent living initiatives areconstrained by a welfare systemwhich assumes dependency.

The National Assistance Act 1948underpins later community carelegislation and provides the legaldefinition of a disabled person as far as community care policy isconcerned. This is someone who is “blind, deaf or dumb, or whosuffers from mental disorder of anydescription and other persons whoare substantially and permanentlyhandicapped by illness, injury orcongenital deformity.” (NationalAssistance Act 1948, Section 29(1)).This definition is out of date,offensive and does not provide auseful starting point for enablingdisabled people to fulfil their rolesas citizens. Disabled peoplethemselves have insisted that it isnot impairment or illness in itselfthat determines their life chancesbut the social, economic andenvironmental barriers they face.

One of the most significant barriersto enabling disabled people to befull citizens is the culture of care anddependency within health and socialcare structures. Associated with this‘culture of care’ is a failure to seeexpenditure on independent livingas a form of social and economicinvestment. Instead of meetingdisabled people’s additional

requirements to enable them toimprove their life chances, resourcesare used in ways that maintain andcreate dependency. This results inhigher than necessary expenditureon social security benefits;segregated services; and lostrevenue from taxes paid by disabledpeople and family members whoprovide ‘informal care66’.

However, the current system ofallocating public resources does notmake transparent the costs of failingto enable disabled people to achieveindependent living. Decisions abouthealth and social care and otherpublic expenditure are not alwaysinformed by a cost-benefit analysiswhich takes the wider costs ofdependency into account.

Support is often characterised by fragmented and silo-basedapproaches

The dividing line between health,social care, housing, education,employment and other public policyareas, at both national and locallevels, makes it difficult to take acomprehensive and cost effectiveapproach to meeting disabledpeople’s needs.

There are many examples whereexpenditure by one government or local authority department means less expenditure for anotherdepartment, yet this is notrecognised. This results ininsufficient incentive to spendmoney from one budget in order todecrease expenditure from another

INDEPENDENT LIVING

66Zarb, G. (1998) What price independence? Unpublished paper available from DisabilityRights Commission.


and can result in not only a poorerquality of life for disabled people,but an inefficient use of publicresources.

Box 4.2: Inadequate responses to need can create unnecessarydependency and diminish disabledpeople’s life chances

The British Polio Fellowship told the Strategy Unit thatinadequacies in orthotics servicescan lead to increased reliance on other public services.

Mr. E had been prevented fromworking because he has had on-going problems gettingproperly fitting orthopaedic boots from the orthotic services.

Miss M had been waiting 10months for orthopaedic shoes anda calliper and was not able toleave her home during this time.She was therefore unable toattend the self-managementcourse (part of the Expert PatientProgramme) and has been havingincreasing difficulty managing hercondition.

These experiences can lead toincreased dependency on healthand social care services andundermine people’s ability towork and to be active citizens67.

A fragmented approach to disabledpeople’s needs also means that a

failure of one public body to meet aparticular need can create costs foranother. For example, in most partsof the country there is a higherdemand for adaptations than can bemet from existing budget allocationsfor disabled facilities grants. Becausethe Disabled Facilities Grant (DFG) ismandatory, this excess demand canmean long waiting lists, resulting in:

• accidents and hospitalisationduring the time that people waitfor adaptations (particularly thoseconcerning access to toilets andwashing facilities); and

• people becoming dependent on personal care, and finding it difficult to manage without this assistance even once theadaptation or equipment has been provided68.

At the same time, there is evidencethat providing appropriateequipment and adaptationsincreases independence, reduces theneed for personal assistance andprevents or reduces healthproblems. In one study, three out offour people said housingadaptations had helped their health,while a third of those who receivedminor aids and adaptations (costingless than £500) reported that theyneeded less help from others69. Butsavings to the NHS and to social carebudgets are not part of decisions –at central or local level – aboutexpenditure on equipment andadaptations.

67Strategy Unit consultation.68Heywood, F. (2001) Money well spent: The effectiveness and value of housing

adaptations, The Policy Press.69Heywood (2001).

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Improving the suitability of new-build and renovated homes fordisabled people would also helpreduce future public expenditure onhousing adaptations, equipment andcare services. Adopting LifetimeHomes Standards would save, onaverage, £1,100 per dwelling on thecost of major adaptations while theaverage cost of building a threebedroom, five person house toLifetime Homes Standards wascalculated to cost an additional £100 to £300 per dwelling (in 1997prices). This was calculated to be atotal saving of £39million per yearon major adaptations70. Furthersavings would also be made in terms of expenditure on minoradaptations and equipment, careservices, hospital stays, andtemporary residential care. LifetimeHomes Standards apply to all agegroups, including children andelderly people, so the potentialsavings would be significant.

There is a fragmentation of disabledpeople’s needs across a range ofdifferent systems

Box 4.3: Fragmentation can result in needs not being met and a duplication of resourcesspent on assessment, delivery, and monitoring

Kelly is a 24-year-old wheelchairuser, who has just moved into herfirst flat and started her first job.In the last year she has had to dealwith six different systems in order to meet her needs. The wheelchair

service assessed her for a new wheelchair; Access to Workassessed her for a desk andcomputer equipment; socialservices assessed her need for a disabled facilities grant andminor adaptations to her flat; the housing department carriedout a financial assessment to see if she should make a financialcontribution towards the cost of adaptations; another section of social services assessed her forpersonal assistance costs up to£265 a week; the IndependentLiving Fund assessed her forpersonal assistance costs over andabove this amount71.

The Health Act 1999 made itpossible for local health and socialservices to work together, bypooling budgets, integratingservices, or designating one agencyto be the lead commissioner.Disabled people’s needs, however,are not confined to health andsocial services. Moreover, there are often disputes between health,social services and otherorganisations as to who isresponsible for meeting a particularneed. For example, someone inemployment who requires anelectric wheelchair may still facearguments between the localWheelchair Service and Access toWork as to who is responsible forproviding it; a person with learningdisabilities whose Person CentredPlan says they need to go to acourse at the local College still faces

INDEPENDENT LIVING

70Cobbold, C. (1997) A cost benefit analysis of Lifetime Homes, Joseph Rowntree Foundation.71Personal communication as part of Strategy Unit consultation.


difficulties with identifying who is responsible for funding thetransport to get there.

Within both health and social care services there is a furtherfragmentation of people’s needs.“Health and social care services weredesigned to meet single rather thanmultiple needs: each individualbranch… has grown up with a fixedidea of what constitutes their ‘corebusiness’. Thus there is an inbuiltinflexibility about meeting the fullrange of people’s needs72.” For example, people with physicalimpairments and mental healthsupport experience a fragmenting of their needs across physicaldisability and mental health services.There is often a failure of physicaldisability services to take account ofmental health needs, and vice versa,and a lack of communicationbetween the two services73. The failure of services to meet theneeds of people with learningdisabilities and people who are Deafor hearing impaired, who also havemental health support needs, hasalso been well documented74,75.

A failure to address people’s needsin a holistic manner can result insome needs not being met.

This can mean that disabled people are unable to fulfil their fullresponsibilities as family members oras citizens. For example, a disabledparent needing help with bothpersonal care and with the practicaltasks of parenting may qualify forhelp with the former from theIndependent Living Fund (ILF), butthe Fund’s Trust Deed precludesassistance with the latter. This means, as one parent put it, “They will fund the physicalassistance I need to do the shop-ping, but they won’t fund thephysical assistance I need to pick the children up from school so myhusband is faced with the decisionof whether he should pack up work76.”

It is often inadequate responses toneed that lead to a poor quality oflife and unequal opportunities,rather than impairment in itself

The Independent Living movementhas stressed that it is not impairmentor illness that inevitably createdependency and lead to a poorquality of life. In fact, a poor qualityof life is commonly created by:

• A failure to adequately meetneeds relating to impairment.

72Rankin, J. and Regan, S. (2003) Meeting Complex Needs: The future of social care,IPPR,p.12.

73Morris. J. (2004) “One town for my body, another for my mind”: Services for people withphysical impairments and mental health support needs, Joseph RowntreeFoundation/York Publishing Services.

74Foundation for People with Learning Disabilities (2002) Count Us In: The report of theCommittee of Inquiry into meeting the mental health needs of young people withlearning disabilities, Mental Health Foundation; Department of Health (2002) A Sign ofthe Times: Modernising mental health services for people who are deaf, Department ofHealth.

75The issues faced by those with complex needs are discussed in Annex F to this report.76SU Consultation.


For example, we know that inmany parts of the country peoplewith head injuries do not receiveadequate rehabilitation services77.An audit of services to peoplewith epilepsy found that 54% ofadults and 77% of children hadinadequate care78.

• Disabling barriers can make worseor create impairment or illness.For example, there is evidencethat people with learningdisabilities experience unequalaccess to primary health care79.Many people with learningdisabilities are, as one professionalput it, ‘not well enough to leadordinary lives80’. This is notbecause of their impairment butbecause of the disabling barrier ofinadequate access to primaryhealth care.

• Services provided in response to the need for assistance can be disabling in themselves. For example, personal assistanceto get up in the mornings may notbe reliably available at the timesomeone needs it in order to goout to work. This may lead to theperson losing their job (or notbeing able to seek employment).Unemployment in itself can in turn

have a detrimental effect onmental and physical health.

Assessments tend to be aboutservices rather than needs

People are often expected to fit into services, rather than servicesenabling them to be active citizens.

“When the social worker came tosee me she said she would assessme for whether I would qualify fordirect payments or home careservices. Actually what I wantedwas to go to college to do an ITcourse so I could get a job. And Ineed help to do that81.”

One of the barriers to implementingdirect payments has been that caremanagers have found it difficult tomake the shift from assessingwhether someone is eligible for aparticular service to assessing whattheir needs are82.

While there have beenimprovements in recent years, it is still too often the case that:

• services are run on a 9am to 5pmbasis, making it difficult tocombine for example, usingmental health services with full-time employment83;

77House of Commons (2001), Head Injury: Rehabilitation, Third Report from the HealthCommittee, Session 2000-01.

78National Institute for Clinical Excellence (2002) National Clinical Audit of Epilepsy-relatedDeaths, National Institute for Clinical Excellence.

79Valuing People Support Team, Key Highlights of Research Evidence on the Health ofPeople with Learning Disabilities,www.valuingpeople.gov.uk/documents/HealthKeyHighlights.pdf. Accessed 25.08.2004.

80Morris, J. (1999) Hurtling into a Void: Transition to adulthood for young disabled peoplewith “complex health and support needs”. Pavilion Publishing.

81SU Consultation.82Commission for Social Care Improvement (2004) Direct payments:

what are the barriers? CSCI.83Social Exclusion Unit (2004) Mental Health and Social Exclusion, ODPM.


• support is only available inspecified settings, such as daycentres, rather than to access alocal college or other communityfacilities84; and

• support at home is delivered inways which make it easier for theservice provider rather than inways which fit in with the serviceuser’s life85.

While direct payments and ILF grantscan enable people to employ theirown support workers, thus givingthem more flexibility, not everyonewants to take on the responsibilityfor employing people. Moreover, inareas (both geographical and type of need) where it is difficult torecruit suitable workers, it is notempowering merely to pass on suchdifficulties to the disabled person to tackle86.

People with significant cognitiveand/or communication impairmentsare particularly at risk of beingdenied choice and control in their lives

Research in the field of learningdisabilities, in both the UnitedKingdom and in the United States,has illustrated how a failure toprovide a personalised response to

individual need can createadditional needs and thereforeadditional demands on services87.

Box 4.4: A failure to providepersonalised responses to needcan create additional needs whichare hard and costly to meet

“David’s early years involvedmoving between special schoolsuntil he ended up at a residentialschool for children with autism. By the time he reached his 13thbirthday he was living in a largehospital having been excludedfrom the special school system.After a few years living in a lockedward he was back with his familyfor short periods during the weekand receiving a complicatedcocktail of community andinstitutional services. During theweek he would spend one night in hospital and one at a respitehostel where there were two staffon duty just for him. At theweekends support staff wouldcome and work from the familyhome. During this time, David hadbuilt up a reputation. Words usedto describe David were – ‘difficultto spend time with, destructive,without speech, aggressive, likelyto hit out, a fast runner, autistic,hyperactive, a drain on the family,

84Fyson, R. and Ward, L. (2004) Making Valuing People Work: Strategies for Change,The Policy Press.

85Cunningham, S. 2000. Disability, Oppression and Public Policy, Independent Living(Keighley).

86This was a point made to us by our Independent Living Expert Group and also by a groupof parents of disabled children, brought together to consult with us by aMaze inBrighton.

87Edge, J. (2001) Who’s in Control? Decision-making by people with learning difficultieswho have high support needs, Values into Action.

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tiring to be with, an unknown quantity, mischievous, needs twostaff with him when out, needsone-to-one when in88.’”

Some people have to move intoresidential care, against theirwishes, because appropriatehousing and support is not available

Some disabled people move intoresidential care against their wishesbecause services are too inflexible.This can also result from resourcesbeing tied up in existing residentialprovision. In one local authorityarea, for example, only 4% oflearning disability revenue fundingsupports people with learningdifficulties living in their own home.The other 96% pays for people tolive in residential care services, with60% of this allocated to largeresidential services89.

The numbers of those with learningdisabilities or mental health supportneeds who are placed in residentialcare increased by 20% and 40%respectively between 1997 and 2002.The numbers of people with physicaland/or sensory impairments inresidential care, having initiallyfallen, are now increasing.

Some of the increase in the numbersof people with learning disabilitiesin local authority funded residentialcare is related to the closure of long-stay hospitals. But a survey ofservices for people with learningdisabilities, found that, althoughlocal health and social servicesagencies subscribed to ‘principles ofsocial inclusion, citizenship andordinary community living’, half ofthe authorities surveyed alsoexpected to increase the number ofplacements in residential homes91.

INDEPENDENT LIVING

People aged under 65 1997 1998 1999 2000 2001 2002

Physically/sensorilydisabled adults 10,356 8,734 9,094 9,690 9,498 9,755

People with mentalhealth problems 7,965 9,277 10,208 10,560 10,995 11,275

People withlearning disabilities 25,446 26,029 27,799 29,495 29,705 30,345

Table 4.1: Local authority supported residents in staffedresidential and nursing care at 31 March (1997–2002)90

88Sanderson H. Kennedy, J, Ritchie, P. with Goodwin, G. (1997) People, Plans andPossibilities: Exploring Person Centre Planning, SHS Ltd.

89South Downs Housing Association (2002) A place to live: Promoting choice and diversityfor people with learning difficulties in Horsham and Mid Sussex, South Downs HousingAssociation. www.doh.gov.uk/vpst/documents/Igpsingl.pdf

90National Statistics/Department of Health (2003) Health and Personal Social ServicesStatistics, National Statistics.

91Department of Health (1999) Facing the Facts: Services for people with learningdisabilities. A policy impact study of social care and health services, Department of Health.


There is also evidence of an increasein institutional care within theprivate sector for people who haveboth learning disabilities and mentalhealth needs: such placements cancost local PCTs between £180,000 to £230,000 per person per year92.

The way in which the ILF operatesalso creates financial pressurestowards residential provision. People whose total weekly supportcosts are over £715 per week are noteligible for an ILF grant. In thesecircumstances, instead of the localauthority paying £295 per week andthe ILF paying costs over and abovethis, the local authority would haveto fund the entire cost of supportingthem to live at home. Some peopleare forced into residential care as adirect result of the cost ceilingsimposed both by the ILF and bysocial services departments93.

Once people are placed inresidential care they often havelittle or no further contact with thefunding authority, particularly ifthey are placed out of the localauthority area. Many people have a very low quality of life and some experience serious abuse94.A disabled person living inresidential care faces significantfinancial disincentives to seekingpaid employment as they wouldonly be able to keep £20 per week

of their earned income before it hasto be used to pay for the residentialhome fees95. In contrast, forsomeone living in their own home,earned income is not taken intoaccount in the charging policy forcommunity care services, directpayments or ILF grants.

Disabled people face a number of barriers to accessing suitable housing

This chapter has already mentionedthat there is insufficient recognitionof the role of housing repair,improvement and adaptations in the policy objectives of keepingpeople out of residential care andpreventing hospital admissions anddelayed hospital discharge. Despite the valuable assistance thatHome Improvement Agenciesprovide to help disabled peopleadapt and repair their homes, somefeatures of the DFG system createsignificant barriers.

While the DFG is mandatory, theresources available are cash-limited.Waiting lists and lengthyadministration procedures are usedto allocate scarce resources.

The DFG is subject to a means testthat does not take into accountoutgoings such as mortgagerepayments or expenditure on

92Brindle, D. (2004) ‘Private care for learning disabled people is a return to Victorian values’,The Guardian, 04.08.2004.

93Kestenbaum, A. (1999) What price independence? Independent living and people withhigh support needs, The Policy Press.

94Pring, J. (2004) ‘The frequency and potential consequences of the failure to visit learning-disabled adults in out of area placements’ Learning Disability Review Vol 9, Issue 2, pp.35-42.

95While the numbers of disabled people living in residential homes who would be able towork are small, the Strategy Unit did receive evidence that there are some in this situation.

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children. This can create particulardifficulties for younger households,such as a young couple where oneperson develops Multiple Sclerosis.Charging policies for communitycare services disregard earnedincome in order ‘to avoid creatingdisincentives to work96’.Unfortunately, the DFG means testcan then negate this policy aim as itdoes not disregard earned income.

There is an upper limit on the DFG.If adaptations cost more than this, itmay well be that it would be betterfor a household to move – but thereis no equivalent assistance in orderto do this. There is evidence thatsometimes adaptations are carriedout which, while fitting within thecost limits, do not adequately meetthe need and are therefore a pooruse of public resources97.

Box 4.5: Delays in processingapplications for disabled facilitiesgrants can have a considerableimpact on disabled people’sopportunities

Jane became paralysed as a resultof a spinal operation. After fivemonths in hospital she was readyto return home and go back towork. However, her application fora disabled facilities grant to adapther flat to enable her to go homewas subject to lengthy delays. Shewas also required to make acontribution to the costs of the

adaptations which she could only do by extending her mortgage.The delay in returning homemeant her job was under threat,yet without her job she would not be able to afford the higher mortgage.

Adapted and purpose-builtaccessible housing is sometimes lostto the stock of accessible housingbecause social housing landlordsoften do not keep a record of suchproperties. When these propertiescome to be re-let therefore they arenot always allocated to people whorequire the adaptations. Some localauthorities run Disability HousingRegisters (which match disabledhouseholds to suitable properties inthe social housing sector) but – eventhough there is some evidence thatthey work – only a minority do so.One local authority estimated thatsavings of £850,000 (on adaptationsand delayed hospital discharge)have been made over a two yearperiod as a result of its DisabilityHousing Register98. Experiencewithin the owner occupied orprivately rented sector is even more limited though growing. For example, there is a privately-run website(www.accessible-property.org.uk)but this is very new and it is unclearwhether it is viable.

INDEPENDENT LIVING

96Department of Health (2003) Fairer Charging Policies for Home Care and other non-residential Social Services.

97Heywood, F. (2001) Money well spent: The effectiveness and value of housing adaptations,The Policy Press.

98HODIS (2004) A Perfect Match: Good Practice Guide to Disability Housing Registers, HODIS.


People who are living in residentialcare and who want to liveindependently often have difficultyaccessing social housing as they areconsidered to be adequately housedand do not meet the allocationcriteria for social housing99. This isalso a common experience of youngdisabled adults who want to leavethe parental home, particularlybecause the private rented sector –the main source of housing foryoung non-disabled people –contains little that is suitable fordisabled people100.

Disabled people experience barriersin the context of transport

Transport is an importantcomponent of independent livingbut disabled people experience anumber of barriers. Low incomes are one barrier, but this is thencompounded by the additionaltransport needs of many disabled people.

The barriers faced by disabledpeople are not just the obviousphysical ones relating to inaccessiblepublic transport. Disabled peoplewith whom this project consulteddrew attention to a number ofdifferent issues.

• Getting to a destination can bejeopardised by just one barrier inthe whole journey. For example, a pavement may have appropriate

texture changes for someone witha visual impairment but the busmay not have announcementsabout destinations.

• Negative attitudes of transportproviders, and other members of the public, can make a journey impossible.

• The information that disabledpeople need in order to make ajourney is not always available (for example which buses areaccessible); moreover transportinformation to the general publicis not always available inaccessible formats.

• Transport needs are often notcovered in social care assessments.

Policies and services that do not specifically target disabledpeople have tended not to address their needs or enable themto access services

Much of government policy is aimedat enabling people to play their roleas active citizens – whether in termsof fulfilling their familyresponsibilities or participating intheir local communities and thewider society. However, disabledpeople, having been treated as inneed of ‘care’, are often overlookedand their roles and responsibilities ascitizens unrecognised. This means,for example, that disabled adults arerarely thought of as also being

99 Smith, Angela (1998) I'm used to it now ... Disabled women in residential care, GreaterLondon Association of Disabled People; National Centre for Independent Living (2000)Routes Out: Report of a Joint Conference, National Centre for Independent Living.

100 Esmond, D. and Stewart, J. (1996) Scope for fair housing: A literature of housing withsupport for younger disabled people, Scope; Kestenbaum, A. (1996) Independent Living:A review., Joseph Rowntree Foundation.

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parents101. Yet recognising theparticular needs and circumstancesof disabled parents will be vital tothe achievement of policy objectivesof increasing employment rates and tackling child poverty: only 30% of disabled lone parents are in paid employment compared to55% of non-disabled lone parents102;a quarter of children living inpoverty have long-term sick ordisabled parents103.

Another example is NeighbourhoodRenewal policies, where the long-term goals – a reduction inunemployment and crime, animprovement in health, skill levels,housing and the physicalenvironment – have particularrelevance to disabled people.Disabled people are also over-represented in deprived areas and itis therefore unlikely that PSA targetswill be achieved without addressingtheir circumstances and needs. Yetthere is some evidence that this hasnot happened as effectively as itshould within the National Strategyfor Neighbourhood Renewal andassociated initiatives104.

There are other services used by thegeneral public (leisure services andlibraries, adult education, transport,etc) which are not as accessible as

they should be to disabled people.While the Disability DiscriminationAct has addressed some barriers,there is yet a need for more positiveaction to open up such ‘universal’services to disabled citizens.Sometimes it is attitudinal barrierswhich get in the way, other timesservices need to take what theyhave to offer to where people are.

Box 4.6: Local services could playan increased role in enablingcommunity participation

The SU expert group on mentalhealth and independent living saidthat being part of neighbourhoodand community networks is veryimportant, but that these aredifficult to sustain when someoneexperiences long-term mentalhealth problems. Many long-termusers of services have very littlecontact with anyone outsidehealth and social services. Localservices such as adult education,library and leisure services couldplay an important role in enablingcommunity participation.

INDEPENDENT LIVING

101 Wates, M. (2003) It shouldn’t be down to luck, Disabled Parents Network; Morris, J. (2003) The Right Support: Report of the Task Force on supporting disabledadults in their parenting role, Joseph Rowntree Foundation.

102 Stickland, H. (2003) Disabled Parents and Employment: Background paper for theHMT/DWP Seminar November 2003.

103 Gordon, D. et al (2000) Poverty and Social Exclusion in Britain, Joseph Rowntree Foundation.

104 Edwards, C. (2001) ‘Inclusion in Regeneration: A place for disabled people?’ UrbanStudies, Vol. 38 No 2, pp.267-286.


4.3 What is the evidence ofwhat works?Involvement of disabled people andtheir organisations improves thedevelopment and implementationof policy, and the delivery of services

The most successful public policy inthe area of social care in recentyears has been Direct Payments. This policy initiative resulted fromdisabled people (most with highlevels of support needs and many of them in residential or nursinghomes) demonstrating that cashpayments were both an effectiveway of meeting their needs and anefficient use of public resources105.Over time, disabled people and theirorganisations worked withresearchers to prove that DirectPayments were efficient106 andsuccessfully campaigned for theCommunity Care (Direct Payments)Act of 1996.

Over a similar timescale, the ILF(created in 1988) proved a verypopular and effective method ofdelivering support to some peoplewith the highest levels of personalassistance needs107. Disabled peopleset up personal assistance supportschemes to provide support topeople to use Direct Payments andILF grants most effectively. The value

of such services is recognised ingovernment guidance on theimplementation of Direct Paymentsand in the administration of theDirect Payments Development Fund.

Box 4.7: Centres for IndependentLiving are grassrootsorganisations run and controlledby disabled people

Their aims are to assist disabledpeople take control over theirlives and achieve full participationin society. There are currently 22fully constituted CILs with another15 local disability organisationseither providing a similar role orworking towards becoming a CIL.For most CILs their main activity,and source of income, is runningsupport schemes to enabledisabled people to use DirectPayments. Such schemes mayinvolve:

• advice and information;

• advocacy and peer support;

• assistance with recruiting andemploying Personal Assistants(PAs);

• a payroll service;

• a register of PAs; and

• training of PAs.

105 Hampshire Centre for Independent Living (1986) One Step On: Consumer-directedhousing and care for disabled people – the experience of three people, HCILPublications; Campbell, J. and Oliver, M. (1996) Disability Politics: Understanding ourpast, changing our future. Sage Publications.

106 Zarb, Gerry and Nadash, Pamela (1994) Cashing in on independence: Comparing thecosts and benefits of cash and services, BCODP/PSI; Morris, J. (1993) Independent Lives?Community care and disabled people. The Macmillan Press.

107 Kestenbaum, A. (1993) Making community care a reality: The Independent Living Fund1988-1993, Independent Living Fund.

85

CILs also:

• run projects encouraging take-up of direct payments amongstmarginalised groups;

• provide disability equalitytraining;

• carry out consumer audits ofservices.

The National Centre forIndependent Living (funded by theDepartment of Health) providesinformation, training, expertise andpolicy development on all aspects ofdirect payments and independentliving. In July 2002, NCIL and theAssociation of Directors of SocialServices (ADSS) signed a protocolsetting out arrangements for localcontracting of independent livingservices and stating that “the ADSSis committed to promotingindependent living for disabledpeople and to supporting thedevelopment of Centres forIndependent Living.”

Box 4.8: User led services haveproved important in reaching outto Black and minority ethnicdisabled people and othermarginalised groups108,109

Warwickshire Council of DisabledPeople appointed an Independent

Living Support worker to work with black and Asian communities.The organisation also employs aBlack Disability worker to beinvolved in its campaigning andpolicy work. In 2000, 24% ofpeople assisted to manage theirown personal assistance wereblack or Asian people110.

Disabled people are best placed totake the lead in identifying theirown needs and in identifying themost appropriate ways of meetingsuch needs

Many disabled people are able toself-assess their needs. Others mayrequire advocacy support. In the fewcases where resources have beenallocated on the basis of self-assessment, there is no evidencethat this has led to disproportionatedemands on services. Indeed in oneof the few evaluations of such aninitiative, people used fewer hoursof an on-call support scheme thanhad been originally envisaged111.

Techniques such as Person CentredPlanning enable the views andpreferences of individuals to driveassessment of need. Such forms ofassessment are effective both interms of enabling disabled people to play their full part in society andmake effective use of public

INDEPENDENT LIVING

108 Barnes, C., Morgan, H. and Mercer, G. (2001) Creating Independent Futures, The Disability Press.

109 Rai-Atkins, A (2002) Best practice in mental health advocacy for African, Caribbean andSouth Asian communities, The Policy Press.

110 Butt, J. Bignall, T. and Stone, E. (2000) Directing Support: Report from a workshop ondirect payments and black and minority ethnic disabled people, Joseph RowntreeFoundation/York Publishing Services.

111 Zarb, G. (2001) Haringey OnCall Support Service, unpublished (available from theNational Centre for Independent Living).


resources112. Person CentredPlanning is an important tool in theimplementation of ValuingPeople113. With the right supportand opportunities, disabled people with high support needs and/orcommunication difficulties can beincluded in this process, and can be in control of important andcomplex decisions114.

The Expert Patients programme(now being rolled out as a nationalprogramme covering a range oflong-term conditions) has its originsin the Arthritis Self-ManagementProgramme, which originated atStanford University in the USA. Thisprogramme – where people witharthritis take the lead in runningsmall group workshops with the aimof enabling people to bettermanage the symptoms of arthritis –has been shown to be highlyeffective in increasing the quality ofpeople’s lives and reducing theirdependence on health services115.

Box 4.9: Impact of the Expert Patient programme

Siobhan Long, an Expert Patientand course tutor for West NorfolkPCT, had had back, neck and footproblems for 14 years before shewent on a pain managementcourse and then an Expert Patientscourse. Now an EPP course tutorshe feels she has a more equalrelationship with healthprofessionals. She has alsoachieved her goal of going backto work116.

The most effective responses arepersonalised to individual need

Enabling disabled people to take thelead in assessments and responses totheir needs also helps create morepersonalised responses to thoseneeds. And personalised responsesmean that disabled people are morelikely to live independent lives,playing a full part in family life,contributing to their localcommunity and seeking employmentor other valued activities.

Direct Payments are an importantexample of a mechanism thatenables a personalised response toindividual needs. Personalisedservices have also proved effective,

112 McIntosh, B. and Whittaker, A. (2000) Unlocking the future: Developing new lifestyleswith people who have complex disabilities, The King’s Fund.

113 Department of Health (2002) Planning with People – towards person centredapproaches, Department of Health.

114 Edge, J. (2001) Who’s in Control? Decision-making by people with learning difficultieswho have high support needs, Values into Action.

115 Barlow, J.H., Turner, A.P and Wright, C.C. A randomized controlled study of the ArthritisSelf-Management Programme in the UK. Health Education Research, Dec. 15(6), 659-663.

116 http://www.natpact.nhs.uk/engaging_communities/communicating_within_communities/article_2/article2_05.php

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and there is evidence that suchmethods can cost less thantraditional services and cansignificantly improve outcomes in terms of the quality of anindividual’s life117.

Box 4.10: Case study of Direct Payments

“I was allocated support twice a day for one hour each visit. In reality I received 10–15 minutesmorning and night. They said theyhad to send two people for healthand safety reasons. Then I wentonto Direct Payments and currentlyreceive more hours for less moneythan it was costing before. But tome the important thing was it gaveme choice and control over howmy needs were met. Also, ofcourse, one hour means one hourof support not a rushed 15 minuteswith two people who often didn'tcommunicate with each other andoften didn’t even acknowledge my existence118.”

Box 4.11: Personalised responses to needs make it less likely thatsomeone who has complex needswill require expensive residentialor home-based services119

William had become increasinglydependent and unable to dothings for himself over the years.He became violent and aggressiveand a decision was made that aresidential placement should befound. In the meantime a localsupport agency – experienced inworking with people like William– put in a package of personalisedsupport tailored to William’sneeds. During the first month,William required one-to-onesupport, including overnight andthis cost £4,016 [1997 prices]. This gradually reduced as Williamwas helped to do more things forhimself and do the things heenjoys doing. His support packageended up costing £671.59 permonth and he no longer neededto go into residential care, whichwould have cost considerablymore. Providing William withpersonalised support had reducedhis ‘challenging behaviour’,increased his ability to do thingshimself and therefore reduced theamount of support he needed120.

INDEPENDENT LIVING

117 Ryan, T. (1998) The Cost of Opportunity: Purchasing Strategies in the housing andsupport arrangements of people with learning difficulties, Values into Action; Zarb andNadash (1998); Witcher et al (2000) Direct Payments: the Impact on Choice and Controlfor Disabled People Scottish Executive.

118 Personal communication as part of SU Consultation.119 This is particularly important in the context of evidence of increasing numbers of young

people with complex needs, including those with autistic spectrum disorder, comingthrough into adulthood.

120 Example taken from: Ryan, T. (1998), 38-39.


Effective support addresses allaspects of someone’s life, instead of fragmenting their lives acrossdifferent services and/or funding mechanisms

Direct payments and ILF grants havebeen the main way in whichdisabled people have themselvestaken a holistic approach to meeting their needs. This has beenparticularly important for peoplewhose needs have been divided byhealth and social care organisationsinto ‘health needs’ and ‘social care needs’. People who requireassistance with managing theirbladders and bowels, or regularphysiotherapy to reduce spasms or prevent chest infections, haveemployed Personal Assistants toassist with these tasks and moregeneral personal care tasks121.Disabled people often prefer thisintegrated approach to meetingtheir needs as they have controlover when, how and by whom theassistance was provided. Such asituation does mean, however, that there is a shift of fundingresponsibility from health to socialservices/ILF with no equivalent shift of resources.

Holistic and rapid responses topeople’s needs can be cost-effective.For example, one local authority setup a pilot project involving a jointteam of both social workers andoccupational therapists who carriedout assessments for people withphysical impairments. Assessments

sought to address needs relating to both impairments and disablingbarriers. Responses included not just social care services, aids andequipment, but also helping peopleto access other services, includinghealth and community services. A comparison of expenditureresulting from these assessmentswith expenditure associated withseparate social work and OT teamsfound that average expenditure onsocial care services was lower andaverage expenditure on equipmenthigher in the Joint Team. It appeared that a holistic approachto needs, combined with a rapidresponse one-off expenditure onequipment, reduced the need forsocial care services and, according to feedback from service users, waswhat they preferred122.

Disabled people need access tohigh-quality information and adviceservices, as well as to supported,independent advocacy

The most common services provided by disabled people’s own organisations are information,advice and advocacy. Easy access to high quality up-to-dateinformation is cited as a crucialservice by most sections of the disabled population123. People appreciate both the servicesprovided by organisations such asCitizens Advice Bureaux and theadvice and information provided by their peers and representativeorganisations.

121 Glendinning, C. et al. (2000) Buying Independence: Using direct payments to integratehealth and social services, The Policy Press.

122 Morris, J. (2004) Social Model Assessment Team Pilot Project: Report of Evaluation. Essex County Council.

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Advocacy and self-advocacy enablepeople to self-assess their needs andseek out the best ways of livingindependently124. Advocacy andsupport for self-advocacy are oftenmost effective when provided byrepresentative organisations ofdisabled people and by disabledpeople themselves125. An increasingnumber of local disabilityorganisations, such as Centres forIndependent Living, have servicelevel agreements with localauthorities to provide advocacy,information and advice.

The Government has recognised thevalue of advocacy services for peoplewith learning disabilities byadopting the long-term aim of achoice of independent advocacyservices in every area and byfunding both citizen advocacy andself-advocacy126.

Effective use of resources supportsfamily and friendship networks andenable access to mainstream society

When people with learningdisabilities are provided withindividualised support, they are ableto contribute to their families andlocal neighbourhoods. Research byValues into Action described, forexample, how one man moved outof a residential home many milesaway from his mother to his ownhome with support workers. Before,his mother struggled to visit himregularly; now he does his mother’sgarden and drops in every day tobring her the local paper127.

Many disabled people whopreviously would not have beenexpected to work are now in paidemployment, education or training.For example, people with ‘severemental health problems’ have beenassisted by South West London andSt George’s Mental Health NHS Trustto access employment and training:many of these people wouldpreviously have attended daycentres128. Following the SocialExclusion Unit’s report on mentalhealth, mental health services are

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123 National Autistic Society (2003) Autism: the demand for advocacy, NAS; West NorfolkDisability Information Project (1997) Closing the Net: A users view of DisabilityInformation in West Norfolk, West Norfolk Disability Information Project; Beresford, B.and Sloper, T.(1999) The information needs of chronically ill or physically disabledchildren and adolescents, Social Policy Research Unit, University of York; Wates, M. 2003.It shouldn’t be down to luck: Results of a DPN consultation with disabled parents onaccess to information and services to support parenting, Disabled Parents Network.

124 Ward, L. (1999) Innovations in Advocacy and Empowerment, Lisieux Hall Publications.125 Morris. J. (1993) The Independent Living Advocacy Project, Spinal Injuries Association;

Bird, A. (2000) GLAD Self-advocacy Project, Greater London Association of DisabledPeople; Greene, M. (1999) Over to us … A report of an advocacy project working withyoung disabled people living in residential institutions, Greater Manchester Coalition ofDisabled People.

126 These initiatives are part of the national Learning Disability Strategy, Valuing People.127 Ryan, T. (1998) The Cost of Opportunity: Purchasing strategies in the housing and

support arrangements of people with learning difficulties, Values into Action, pp. 56-58.128 Rinaldi, M., McNeil, K. Firn, M., Koletsi, M., Perkins, R., and Singh, S.P. (forthcoming)

‘What are the benefits of evidence based supported employment for people with firstepisode psychosis, Psychiatric Bulletin.


working with Jobcentre Plus to improve the employmentopportunities of mental healthservice users129.

4.4 Recommendations for action “Mainstreaming” disability issues

When the duty to promote disability equality contained in the Disability Bill comes into force,public authorities will be legallyobliged to scrutinise all policyinitiatives and proposed legislationto ensure that whenever these couldhave a material impact on disabledpeople’s lives, the needs andcircumstances of disabled childrenand adults are properly addressed,and that such initiatives give dueregard to the need to promotedisability equality. This will be thecollective responsibility of allgovernment departments, workingunder Disability Rights Commissionguidance. The Strategy Unitwelcomes this implication of thePublic Sector Duty.

Appropriate mechanisms should beused to encourage “mainstream”community and other public servicesto increase take-up and use bydisabled people. Cross-cuttingtargets should be used to encourageeffective joint-working.

Working with disabled people and their organisations to achievethe vision

Recommendation 4.1: Modelling good practice

From 2005 onwards, governmentdepartments should model good practice in involving disabled people.

A key element of the public sectorduty to promote disability equality is the requirement that publicauthorities involve disabled peoplein their compliance with the duty’srequirements. The DRC will beproducing guidance to help publicbodies to respond.

All targets, standards andagreements substantially affectingdisabled people should be set inconsultation with disabled peopleand their organisations.

A User Involvement Protocol shouldbe developed, in consultation with disability organisations, for all government departments. The organisational arrangements for developing this protocol arediscussed in Chapter 8. This protocol should include:

• early involvement of disabilityorganisations in policydevelopment;

• seeking information fromdisability organisations on theimpact of policy options;

• agreeing criteria for whichorganisations to involve, in line

129 Social Exclusion Unit (2004) Mental Health and Social Exclusion, ODPM.

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with the public sector duty toinvolve disabled people;

• payment of fees and expenses forinvolvement; and

• addressing all access needs wheninvolving disabled people andtheir organisations.

Recommendation 4.2: User involvement protocols

By 2006, user involvementprotocols for both commissioningand monitoring services should bedeveloped by public bodies, inconsultation with disabled people.Local authorities should develop aprotocol for the whole authority,not one per individual function.

The development and use of theprotocols will be part of existingservice improvement initiatives.Registration and inspection bodieswill be asked to develop furthertheir involvement of service users,and to use standards relating to userinvolvement when registering andinspecting services.

Recommendation 4.3: User-led organisations

By 2010, each locality (defined as that area covered by a Councilwith social services responsibilities)should have a user-ledorganisation modelled on existingCILs. DH and ODPM to lead.

Local organisations, run andcontrolled by disabled people130, will be a vital part of theimplementation of a new approachto supporting independent living.Funding for the services providedwill come from Service LevelAgreements with health, socialservices, DWP and other agencies,and from spot purchasing of servicessuch as disability equality trainingand consumer audits. The exactnature of the services provided andtheir relationship with statutoryagencies will vary according to localcircumstances but, at a minimum,the organisations should provide:

• information and advice;

• advocacy and peer support;

• assistance with self-assessment;

• support in using individualbudgets (including cash payments)to meet needs;

• support to recruit and employpersonal assistants;

• disability equality training; and

• consumer audits of local services.

The case should be explored foradditional resources to be bid forfrom Spending Review 2006 tofacilitate the development of anational network of user-ledorganisations and to support highquality services. As existing CILs

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130 The defining characteristics of these local organisations would be those set out inthe protocol for contracting direct payments support schemes agreed between the

National Centre for Independent Living and the Association of Directors of SocialServices in July 2002.


provide the same service for olderpeople using direct payments asthey do for people below retirementage, it would be expected that theexpansion of user-led organisationswould similarly provide a service todisabled people of any age.

Personalising responses to needs and maximising choice andempowerment

Recommendation 4.4: Supporting independent living

DH supported by DWP, DfES andODPM should – by 2012 – worktowards a new approach tosupporting independent living,which delivers support, equipmentand/or adaptations in a way that:

• addresses all aspects of needsfor support and/or equipment oradaptations;

• is personalised according toindividual need andcircumstances;

• is underpinned by the principleof listening to disabled peopleand acknowledging theirexpertise in how to meet theirneeds;

• maximises the choice andcontrol that people have overhow their additionalrequirements are met;

• provides people with securityand certainty about what levelof support is available;

• wherever possible, minimises the disincentive to seek paidemployment or to move fromone locality to another; and

• uses existing resources tomaximise social inclusion.

The next section sets out a pilotingprocess for a new system ofsupporting independent living fordisabled people.

For disabled people to be supportedin independent living, a range ofindividual needs need to be met.These needs are currently addressedthrough a number of differentsystems and budgets within andbeyond social care, including:community care resources; housingadaptations; independent living;advocacy; and employment andeducation support. Governmentshould aim for a situation whereresources are used to increaseindependence as effectively aspossible, and avoid situations wherea failure to meet needs from onebudget results in increasedexpenditure from another.

While Direct Payments havedelivered significant choice andcontrol for some people, they arenot suitable for everyone. Moreover, the fragmentation ofpeople’s needs across differentbudgets means that Direct Paymentsare not always sufficient to deliver a personalised and holistic responseto individuals’ needs.

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This report therefore proposes thatdifferent sources of funding shouldbe brought together in the form ofindividual budgets – while givingindividuals the choice whether totake these budgets as cash or asservices. The overall aim would be to enable existing resources to beallocated and services delivered inways that personalise responses toneed, and give disabled peoplechoice over how their needs are met.

This report envisages that nationalroll-out could take place by 2012,subject to there being clear evidenceon the preferred design of thesystem, and subject to the availabilityof appropriate resources to initiate change.

The new system would beunderpinned by a number of key principles:

• a simplified resource allocationsystem, including ‘one stop’assessment and informationprovision, enabling availableresources to be allocatedeffectively according to need131;

• individuals should be able to takesome or all of their budget as acash payment and/or to havecontrol over the budget (withsupport if necessary) withoutactually receiving the cash;

• budgets would be available tomeet agreed eligible needs butunder the control of the person

needing the support, withassistance if required;

• self-assessment, withadvice/information or advocacysupport where required;

• eligibility based on requirementsarising from disabling barriers(e.g. cash payment for taxis whenpublic transport is inaccessible)and additional requirementsassociated with impairment (e.g. voice-recognition software to enable someone to read text at home and work);

• access to advocacy where this is needed, with qualifications and standards for independentadvocates.

The new system would include all budgets that enable differenttypes of support needs to be met,including personal care; family rolesand responsibilities; access to thecommunity, employment, voluntarywork, training and education, andleisure activities; and includeequipment, personal assistance,transport, adaptations and advocacy.

Budgets that should be consideredfor inclusion are: community careresources and social servicesexpenditure on equipment andminor adaptations; IndependentLiving Funds; Disabled FacilitiesGrant; Family Fund; and Access toWork. Individual budgets shouldwherever possible minimise the

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131 For example, based on the approach being tested out by the In Control pilots which arepart of the implementation of Valuing People. www.selfdirectedsupport.org

disincentive to move from one localauthority area to another. And thereshould be a national charging policywhich so far as possible minimisesfinancial disincentives to seek paidemployment132. There should also be a separation of the role ofassessment from the role ofdetermining eligibility133.

The new system would require a cultural shift so that social careprofessionals are working topromote self-directed support. Such a shift would be encouragedby closer working relationshipsbetween health and social careorganisations and organisations of disabled people.

Box 4.12: Equipment or supportwhich is portable should belong to the individual disabled personand not to the employer

The Expert Group on IndependentLiving told the Strategy Unit that,while employers might needadvice about reasonableadjustments and should beresponsible for general changes todo with access (e.g. ramps, loopsystems, Clearprint standards forwritten communications),support/assistance/equipmentpersonal to a particular individualshould be delivered by the samesystem that provides the assistanceand equipment someone needswhen they are not at work.Existing Access to Work rules do

allow JobCentre Plus to buy out the employer’s share of anindividual’s equipment if the userneeds that equipment for anotherjob. Importantly, however, theequipment does not belong to the individual and there is nointegration in the support orequipment needed both in andout of the workplace, because of different budgets and delivery systems.

This report makes some specificproposals concerning Access toWork, and the role of supportedemployment agencies and DEAs inChapter 7. The proposals relatingto Access to Work are relevant toproposals concerning independentliving. Any equipment or supportwhich is portable and could beused in any employment contextshould belong to the individualdisabled person and not to theemployer. Such support orequipment should be part ofindividual budgets. This wouldprevent disputes between health,social services, and DWP aboutfunding responsibilities and wouldalso increase disabled people’sability to move between one joband another. It would also reducethe number of situations wheresomeone does not get the supportor equipment they need untilsome weeks or months after theyhave started a job.


132 This is already the situation in the current charging policy for community care servicesbut (a) it will be more clearly stated in revised guidance and (b) it will need to beextended to the means test for disabled facilities grants and for residential care.

133 This feature is being tested out by the In Control pilot in Lincolnshire.


Early pilots are needed to assesswhat sort of system could deliverthis new approach

Recommendation 4.5: Piloting individualised budgets

An evidence base for individualbudgets – bringing togethervarious sources of funding,services, equipment andadaptations – should bedeveloped over the next threeyears, within existing resourcesand working with localorganisations already makingprogress in this area.

The case should be considered forsubmitting a Spending Review2006 bid to enable further pilots –any new fund should be on thebasis of an ‘invest to save’approach, which would provideup-front resources to facilitatefurther evidence-building and tointroduce the changes required by the new system.

DH, supported by DWP andODPM, from early 2005 onwards.

The new approach to supportingindependent living will represent astep-change from currentapproaches. It is therefore proposedthat possible organisationalstructures for delivering individualbudgets should be piloted andevaluated. Two approaches areproposed.

• In the short term – over the nextthree years – DH134 should takethe lead, working with othergovernment departments (in particular ODPM and DWP), to identify local authorities which are already working towards the agenda set out in this chapter, and find ways of using existingwork to build a coherent evidencebase. One promising route wouldbe to work with some of the Local Area Agreements (LAAs)pilots, being driven by localauthorities and local strategicpartnerships (LSPs), subject tocomplementarities with locally-agreed outcomes and withoutimposing additional burdens.

• DH should also take the lead –with input from ODPM and DWP – in considering the merits of a possible bid for SpendingReview 2006 funding on an ‘invest to save’ basis. Such funding would enable a moreextensive programme of pilots to be undertaken across localauthorities, and be aimed atimproving the evidence base andintroducing the different elements of the new approach to supporting independent living.The intention would be to testwhether the new approach canindeed improve outcomes forservice users, while improving the efficiency of service provision. It would be importantto ensure there is systematicservice user involvement.

134 Stephen Ladyman, Parliamentary Under Secretary of State, Department of Health hasalready discussed many of the issues covered in this chapter. See, for example, PUSSspeech to the Learning Disability Today Event on 24th November 2004.


The piloting process will need toaddress questions such as:

• Is the use of individual budgetscost-effective?

• How can we make sure that thoseholding individual budgets havegood quality services/equipmentto choose between?

• Are individual budgets appropriatefor a range of different needs andcircumstances?

• What level of support is requiredto use individual budgets?

• How can we ensure equitabletreatment for people who cannotmanage an individual budget evenwith support?

The piloting of individual budgetscould also test whether earlyintervention with people who arenot eligible for services would becost-effective in the long run, bymanaging needs proactively beforethey increase.

Recommendation 4.6: The role of local authorities

Local authorities should have akey strategic role in delivering the new system.

ODPM to lead, with support fromDH, from 2005 onwards.

The forthcoming Green Paper onAdult Social Care will initiate aconsultation on the role of localauthorities in planning services for

disabled people. It may be thatmore than one model of deliveringthe outcomes is shown to beeffective. However, irrespective ofthe outcomes of the pilots, localauthorities are likely to continue to have the following roles:

• strategic planning to meet the needs of their disabled population;

• building bridges between health,education, social care providers,housing, employment support,local and regional economicdevelopment activity (includingneighbourhood regeneration);

• with partner agencies, using theircommissioning role to enable the development of services torespond to disabled people’s useof individual budgets;

• putting in place easier access to information;

• developing community capacityand cohesion; and

• complying with their public sector duty to actively promoteequality of opportunity fordisabled people.

Social services authorities, and other social care agencies, are likely to continue to have a key role in bringing about serviceimprovements, so that disabledpeople have a real choice whenusing their individual budgets tomeet their needs. For example, a


social care agency could set up block contracts with serviceproviders with a guarantee ofminimum volume, but on a call-offbasis. The social care agency couldthen ‘market’ these contracts tothose holding individual budgets.Such an arrangement would not bewithout risks for the agency – butwould capitalise on the advantagesof block contracts while providing a significant incentive for quality services.

Recommendation 4.7: Information and advice

DH, by 2006, should assess existinginformation and advice provision,and consider the case forsubmitting a Spending Review2006 bid to address any gaps identified.

The efficiency of any new system ofindividualised budgets will need tobe promoted by ensuring thatindividuals have access to high-quality information and adviceabout services and equipment. The type of information needed islikely to include:

• information about entitlementsand how to find you way aroundthe system;

• local and national informationabout services, equipment,advocates and service brokers(including user-friendly guides toservices inspected by CSCI); and

• local and national users’ views of services, equipment, and other support.

Investment in services for disabledpeople should be determined by the aim of enabling disabled people to fulfil their roles andresponsibilities as citizens

Investment in public services shouldbe switched from services thatcreate dependency, towards servicesthat enable disabled people to fulfiltheir roles and responsibilities ascitizens. This will build on theexisting policies concerning mentalhealth day services and theimplementation of Valuing Peopleby extending this principle to allpublic investment aimed at meetingthe needs of all disabled people.

Recommendation 4.8: Supporting disabled people to help themselves

DH should:• introduce, after consultation,

a more appropriate definition of ‘disabled person’ for thepurposes of community careservices that is consistent withthe DDA definition and takesaccount of the implications fordisability across all ages. If thechange requires legislativechange it should beincorporated within otherplanned legislative amendments;

• in 2005, consult on the merits ofa ‘right to request’ not to live ina residential or nursing care


setting, taking full account of the particular issues faced byolder people, and consideringthe financial, organisational andlegal implications of both thestatus quo and alternativeoptions. This ‘right to request’would require service providersto make explicit the reasonsbehind their decision, includingcost considerations;

• by end of 2006, analyse the costs and benefits of amendingcharging policies for residentialcare to minimise disincentives to paid employment and ifappropriate, make theseamendments in the light of theevidence; and

• by 2006, consider making thecase for ‘invest to save’resources to be made availablefrom SR2006 to enable thedevelopment of communitybased resources to meet theneeds of children and adultswho would otherwise be placedin residential care (see alsoChapter 5).

The case will need to be made forextra resources to initiate some ofthe changes required to movetowards a new approach tosupporting independent living. But the analysis carried out for this report suggests that any extraresources could be seen as a form of social investment – there is goodreason to expect that the net

present value of this investment in independent living should bestrongly positive. A more effectivetargeting of support will reducebenefit dependency, promoteopportunity and enable morepeople to take up theirresponsibilities in contributing to society135.

Improving housing opportunities for disabled people

Recommendation 4.9: Improving the DFG

ODPM should consider, by 2005,reform to the DFG in the light ofthe forthcoming findings of thereview. In particular it shouldconsider whether changes toexisting eligibility criteria couldmitigate disincentives to paidemployment.

As discussed in Section 4.2, a failureto make transparent the costsresulting from a delay, or failure, tocarry out adaptations – or provideequipment – can lead to greaterpublic expenditure than wouldotherwise be necessary, as well ashaving a significant impact ondisabled people’s quality of life.

The current policy review of the DFGhas commissioned an extensiveresearch project being undertakenby Bristol University to examine thecurrent operation of the DFGprogramme and to makerecommendations for improvementin line with the Review Group’s

135 The DRC and SCIE are working on a cost benefit analysis of independent living whichshould provide additional evidence.

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terms of reference. This will addressmany aspects of the costs andbenefits of delivering homeadaptations including alternativeoptions such as providing moremoving grants. It will also providesome evidence of the implicationsfor other government programmesof not providing DFGs.

There is at present no effectiveprocess for considering theimplications of failing to provide – orof delays in providing – adaptations,on other programmes and budgets.This is illustrative of wider problemswith budget and programmeboundaries. A lack of transparencyoccurs across many of theseboundaries at both national and locallevel. This can result in unnecessarilyhigh costs and poorer outcomes for disabled people. Making suchrelationships transparent, and takingthem into account in decisions aboutbudget allocations, should enable amore cost-effective approach tosupporting independent living. If this can be done for the funding ofadaptations, important lessons maybe learnt for extending this approachto other areas.

Recommendation 4.10: Including disabled people inhousing initiatives

ODPM, from 2005 onwards, shouldwork with the DRC, organisationsof disabled people, and theHousing Corporation to ensurethat investment in initiatives suchas neighbourhood renewal,

housing market renewal, low-cost home ownership and key workerhousing schemes improve housingopportunities for disabled people.

Most aspects of housing policyimpact on the life chances ofdisabled people. The public sectorduty to promote disability equalitywill require future policies to bescrutinised to ensure they promote,rather than diminish, disabledpeople’s housing opportunities. The public sector duty means that aproactive approach will be taken topromoting equality of opportunityfor disabled people in terms of theirhousing experiences.

Better use should be made of thestock of designed and adaptedhousing to ensure that disabledpeople are enabled to accesshousing that is appropriate to theirneeds. The Government has recently given a commitment toissue statutory guidance on how this can be achieved in the socialhousing sector.

Recommendation 4.11: Lifetime Homes

As part of the review of buildingregulations announced in spring2004, ODPM should commissionwork, by 2006, to review theeffect of the 1999 guidance onaccess to dwellings, and toconsider the feasibility ofincorporating Lifetime Homesstandards, updated as necessary,into the guidance on Part M of

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the Building Regulations. Any amendment would be subject to aRegulatory Impact Assessment andthe outcome of publicconsultation.

There is widespread acceptance thatkey features of the current LifetimeHomes standards are popular withhouseholders, can be provided forminimum cost, and save money toboth the private and the publicpurse in the long run. However, thestandards were written some yearsago and need updating.Recommendation 4.11 would enableconcerted action on an issue whichurgently needs tackling, given theprojected increase in new-build overthe coming years.

Personalised and integratedapproaches to transportopportunities

Recommendation 4.12: Transport and independent living

2005 onwards, DH to encouragelocal authorities to includetransport and mobility needs ofdisabled people in assessmentswithin the new system ofpromoting independent living.

Independent living assessmentsshould include looking at transportneeds, some of which could be metwithin individual budgets (forexample where someone needs‘mobility training’ or confidencebuilding to use public transport).

Where barriers relate to transportinfrastructure or service provision,the forthcoming public sector dutyto promote disability equality willrequire Local Strategic Partnerships,16 – 19 Transport Partnerships andRural Transport Partnerships to paydue regard to this information, andto remove these barriers in carryingout their functions.

Recommendation 4.13: Transport and local authorities

The Department for Transportshould, from 2005 onwards,encourage local authorities to playa strategic role to ensure thatdisabled people do not experiencebarriers at any stage of thejourneys they need to make.

Local authorities should beencouraged to use the frameworkprovided by the AccessibilityPlanning Guidance, to address thetravel experiences of disabledpeople, including those whosetransport needs relate not to thephysical environment but to the way a service is provided. Disabledpeople and their organisationsshould be fully involved in themonitoring and implementation of Accessibility Strategies (requiredas part of Local Transport Plans)through the implementation of the User Involvement Protocols and consumer audits carried out by local CILs.

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Summary

The early years are a critical period for disabled children. Childdevelopment and future life chances – as well as those of siblings – arecritically affected by the support and services received by young disabledchildren and their families. Targeting support at these families will alsoplay a major role in helping to eradicate child poverty.

Families of disabled children should have access to the individualisedbudgets described in Chapter 4, providing choice and empowermentacross multiple transitions. Pilots for the way in which these individualisedbudgets will work should include families of disabled children – and, indue course, a new system should be rolled out nationwide.

Focusing on the current situation, the key challenge is to make sure thatdisabled children and their families benefit from wider reforms in earlyyears’ policy. Future government policy should enable young disabledchildren and their families to access ‘ordinary’ lives, through effectivesupport in mainstream settings. Services – both specialist and mainstream– should be designed to meet families’ needs through early familysupport. Services also need to be ‘fit for purpose’ in terms of workforce,joint working and information about disabled children’s needs.

This points to the need for progress in a number of areas, for example:

• disabled children and their families should have timely access to theequipment they need, when and where they need it;

• all families with a disabled child who need it should receive childcareprovision that is sustainable, high quality, flexible, affordable andaccessible; and

• a key worker should be in place for all families with high needs toprovide information, improve communication and coordinate multi-agency interventions.

Chaper 5: Early years and family support


This chapter specifically addresses theneeds of young disabled childrenunder five years and their families,though connections are madebetween spend on older children andyounger children. Section 5.1 outlinesbriefly the current situation facingfamilies with young disabled childrenat the moment. Section 5.2 looks atwhat needs to be done to enablefamilies with disabled children toaccess ‘ordinary’ lives. Section 5.3addresses services that meet families’needs, including early family support,equipment and housing. Section 5.4contains proposals to ensure thatservices for disabled children are ‘fit for purpose’ through a trainedworkforce, joint-working and shared information.

5.1 What is the currentsituation?Chapter 2 has described thechanging population of youngdisabled children – disabledchildren’s needs are increasing, withimplications for the range ofsupport and the configuration ofservices they require.

Disabled children are more likely to live in poverty than non-disabled children

The Government’s goal to halvechild poverty by 2010 and eradicateit by 2020 will require specific

targeting of families with disabledchildren. Children from lowerincome households are more likelyto report long standing illness ordisability136 and mental healthissues137. This reflects a two-wayrelationship between low incomeand impairment.

• Poverty can increase the risk of achild having an impairment. Forexample, children born to lowincome families are more likely tobe low birth weight, withassociated risks of future healthproblems, including delayed motorand social development138. Babieswith very low birth rates (under1,500 grams) are at increased riskof long-term impairment139.

• Having a disabled child can alsomean that parents find it harderto maintain full-time employment,their housing can be inadequatefor their child’s needs, andexpenditure on basic needs isincreased. Families with disabledchildren can experience negativeattitudes from others aboutthemselves and their child. All this can lead to poverty andsocial exclusion of the wholefamily, including siblings140.

The first few years are critical to thelife chances of all children; fordisabled children there can also be

136 Health Survey for England (2002) The Stationery Office.137 Meltzer H et al (2000) The mental health of children and adolescents in Great Britain.138 For example, Hediger, Overpeck, Ruan and Troendle (2002) ‘Birthweight and gestational

age effects on motor and social development’, Pediatric and Prenatal Epidemiology, 16.139 Hack, Klein and Taylor (1995) ‘Long-term developmental outcomes of low birthweight

infants’, The Future of Children: Low birth weight 5 (Spring 1995).

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major impacts on the life chances of their families. The result is agroup of children with reduced life chances and multiple sources of disadvantage, living in sociallyexcluded families.

There is unmet need amongminority ethnic families withdisabled children

The levels of unmet need forservices by minority ethnic parentswith disabled children have beenfound to be higher than for whitefamilies141. There is also someevidence that minority ethnicfamilies with disabled children havelower take-up of benefits such asDisability Living Allowance142.

One aspect of minority ethnicfamilies’ interaction with serviceproviders is language, and there areshortages of interpretation facilitiesin some areas. There are also waysin which assumptions that minorityethnic families receive high levels of family support can affect thelevel of services offered to them. And services can also be delivered in a way that makes it difficult forcertain families to take them up (for example, provision of overnightsupport for children out of thehome, rather than in the home).

Early years policy is expanding, thechallenge is making sure disabledchildren benefit from wider reforms

Early years is a dynamic policy area with many new initiativesaimed at bolstering developmentand support for very young children.Given the importance of early yearssupport in promoting life chances,these policies are welcome. Moreevidence is required, however, onthe impact of these policies ondisabled children.

Box 5.1: Summary of key earlyyears and family support policies

The overarching framework forchildren’s policy comes from theEvery Child Matters Green Paper,and the subsequent Children Act2004, and the Children Act 1989.

The Children’s National ServiceFramework (NSF), published inSeptember 2004, sets out a ten-year programme for sustainedimprovement in children’s healthand well-being through standardsfor the care of children, youngpeople and maternity services.Standard 8 of the NSF has aparticular focus on disabledchildren and young people andthose with complex health needs.

Sure Start includes a range ofchildcare, early years and

EARLY YEARS AND FAMILY SUPPORT

140 The recommendations in Chapter 7 aim to improve the employability of disabled adults, a group which includes disabled parents. Disabled parents, as well as parents ofdisabled children, face barriers to employment and improving their life chances. Somefamilies will include disabled parents and children although there is little specific dataon this group.

141 Chamba, R et al (1999) On the edge: Minority ethnic families caring for a severelydisabled child. Joseph Rowntree Foundation.

142 Chamba, R et al (1999).


integrated services aimed at achieving better outcomes forchildren, parents and communities.Children’s Centres will build onSure Start local programmes,neighbourhood nurseries and earlyexcellence centres and will providefamilies with pre-school children inthe most disadvantaged areasintegrated early education andchildcare, family support, healthand advice on employment andtraining opportunities. There willbe 3,500 children’s centres by 2010.

Children’s Trusts are a non-statutory aspect of localgovernment that will, inpartnership with the voluntaryand community sector, commissionchildren’s education, socialservices, certain health servicesand Connexions. Government hasrecommended there to be one inevery area by 2008.

Together from the Start is a set of guidance for professionalsworking with disabled children(up to three years) on how todeliver services, diagnoseimpairments earlier and work with families.

Early Support is a programmeaiming to provide family supportto very young disabled childrenthrough service integration,improved information sharing andassessments, and support from keyworkers, using the principles ofTogether from the Start.

Early education has been expanded with a free, part-timenursery place available for threeand four-year-olds in England. A pilot has been announced toextend this to 12,000 two-year-olds in disadvantaged areas.

Family Fund provides grants to families with severely disabled children to help withadditional costs.

Removing Barriers to Achievement– is the Government strategy for special educational needs (SEN)to enable all children to benefitfrom education. SpecialEducational Needs Coordinators(SENCOs) have a key role inhelping to ensure children’s needsare identified and addressedthrough specialist support.

There is a free, national TelephoneHelpline (0800 808 3555) run byContact A Family and funded bygovernment, to provideinformation to families on allmedical conditions and local andnational support groups.

The Strategy Unit report builds onthese existing early years andfamily support policies, includingthe standards set in the Children’sNational Service Framework.

105EARLY YEARS AND FAMILY SUPPORT

5.2 Accessing ‘ordinary’ livesOverarching vision for accessing‘ordinary’ lives: by 2025, all familieswith disabled children to haveaccess to high-quality, affordablechildcare and early education.

All young children and their families have needs relating to their well-being and development. These change quickly over thecourse of a young life – fromnewborn baby to toddler to youngchild. Much of the focus for veryyoung children is the homeenvironment itself, but ‘ordinary’lives for young children also meansinteracting with other children,parents and extended family eitherin or beyond the home throughplay, early education and care.

The individualised budgets approachdescribed in Chapter 4 should helpto make sure that these needs aremet, if applied to the servicesprovided to disabled children andtheir families. These family budgetscould holistically address the family’sneeds arising from their child’simpairment – meeting their needsand enabling them to access‘ordinary’ lives simultaneously. Thebudget could encompass housing,transport, equipment, childcare andsupport services and take intoaccount the total impact of thechild’s impairment on family life,including siblings and parents.

The extension of this approach intochildhood would need to take fullaccount of the structure of children’s

services (and the legal role ofparents in the care of youngchildren) and the role of educationin children’s lives. It should also beconsistent with other nationaldevelopments towards rationalisedfunding streams.

Recommendation 5.1:Individualised budgets

The individualised budgetsapproach described in Chapter 4should, in principle, be extendedto families with disabled children.

The mechanisms, costs andbenefits will need to beinvestigated through pilotscoordinated with those for adults.The design and timing of thesepilots will also need to be carefullycoordinated with the roll-out ofwider changes to the landscape of children’s services.

DH with support from DfES, DWPand ODPM. By 2012, subject toevidence and resources.

In parallel with developingindividualised family budgets, thereare many other areas where progressneeds to be made in the short tomedium term.

A lack of childcare and earlyeducation means that many familieswith disabled children are sociallyand economically disadvantaged.

Disabled children and their familieshave proportionately less childcareand early education provision than


other groups143. Evidence indicatesthat this is due to a lack of availableplaces for disabled children and tothe high costs of existing places. A lack of childcare and earlyeducation has multiple implicationsfor families, including siblings,because families becomedisproportionately home-based withimpacts on income and on socialexclusion. There are also impacts on the child’s development.

There is particular shortage of good-quality, affordable childmindersaccessible to disabled children144.Childminders lack training to meetdisabled children’s needs145 andthose who do look after disabledchildren may also earn less becausethey can look after fewer children atone time, or provide a service whichis unaffordable for many families.School-based provision is morereadily available, but 62% of schoolproviders in one survey could onlyoffer a place to one disabled child at a time146.

There has been high take-up ofgovernment’s free part-time earlyeducation places – 82 places per 100three-year-old children have beentaken up and 98 places per 100

four-year-old children have beentaken up147. However, there is someanecdotal evidence that some of thehardest to reach families, includingthose with disabled children, are notaccessing these places.

Childcare and early education helpchildren’s development, familyincome and social inclusion

The Early Years Transition andSpecial Educational Needs (EYTSEN)and Early Provision of Pre-schoolEducational (EPPE) projectsdemonstrated benefits from high-quality pre-school educationalactivity, especially if combined withcare and started before threeyears148. These interventions had apositive impact on young children’scognitive development, includingthose ‘at risk’ of developing SEN149.Indeed, children who did not go topre-school were more ‘at risk’ ofSEN. The research also showed thatdifferent types of SEN are helped by different types of pre-schoolprovision which makes earlyidentification of SEN important.

The Government is alreadycommitted to free part-time earlyeducation places for all three- andfour-year-olds. There will also be a

143 National Audit Office (2004) Early Years: Progress in developing high quality childcareand early education accessible to all, Report by the Comptroller and Auditor General.

144 National Audit Office (2004).145 National Audit Office (2004).146 National Audit Office (2004).147 National Statistics (2004) “Provision for Children Under Five Years of Age in England:

January 2004 (Final)”148 Sylva et al (2003) The Effective Provision of Pre-School Education (EPPE) Project :

Findings from the Pre-school Period, Institute of Education; Sammons et al (2003) TheEarly Years Transition and Special Educational Needs (EYTSEN) Project, DfES.

149Although there is significant overlap between children with a SEN and disabled children,these two groups are not the same. This is discussed in Section 1.4.

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pilot to extend free part-time earlyeducation to 12,000 two-year-olds indisadvantaged areas. The challengewill be to ensure that disabledchildren are fully included in these commitments.

Box 5.2: Good practice example ofa mainstream nursery school

A mainstream nursery school insouthern England offers priorityplaces to children with SEN. Theschool creates an inclusiveenvironment so that every childcan learn through play.

It has a toy library, funded by theEarly Years Development andChildcare Partnership (EYDCP),which provides activity packs toguide parents on how to play withtheir child to promote theirdevelopment. The toys focus onspecific issues such as speech andlanguage or motor skills.

But there are problems even in this beacon school. The schoolSENCO needs half a day per weekto liaise with other professionalssuch as health visitors and childdevelopment teams, but this isoften unavailable owing tofunding constraints. There is nofunding to create a dedicated‘quiet’ room, which restricts theschool in meeting certain children’sneeds. There is also fundinguncertainty about the toy library.

There is widespread evidence on thebenefits of high-quality childcare150,and the Child Poverty Review 2004151

and the Government’s ten yearstrategy on childcare152 states thatthe provision of good quality,accessible childcare will beenhanced. The Sure Start Unit has anew set of targets, as a contributionto reducing the proportion ofchildren living in households whereno one is working, by 2008: toincrease the stock of Ofsted-registered childcare by 10%;increase the take-up of formalchildcare by lower income workingfamilies by 50%; and introduce, byApril 2005, a successful light-touchchildcare approval scheme.

In the future, there will be moresites at which childcare is providedincluding Neighbourhood Nurseries,Children’s Centres and extendedschools providing ‘wraparound’ careafter school hours. There are movestowards further integration of earlyeducation and childcare, and theGovernment has published a 10 yearstrategy for childcare. The challengeagain will be to ensure that disabledchildren can access these facilities.


150 See, for example, Melhuish, T. (2003) A literature review of the impact of early yearsprovision on young children, with emphasis given to children from disadvantagedbackgrounds. Prepared for the National Audit Office.

151 HM Treasury (July 2004) Child Poverty Review. 152 http://www.hm-treasury.gov.uk/pre_budget_report/prebud_pbr04/

assoc_docs/prebud_pbr04_adchildcare.cfm


Recommendation 5.2:Childcare and early education

As part of the Government’sexisting commitment to earlyeducation, DfES should ensurethat all three- to four-year olddisabled children and childrenwith SEN can access the free part-time place provision (currently twoand a half hours for five sessionsfor 33 weeks) by 2010, and thatproviders will have adequateaccess to a fully-supported earlyyears SENCO.

As part of the 10-year strategy forchildcare, the Sure Start Unitshould ensure, by 2015, all familieswith a disabled child under fiveyears can access high quality,flexible childcare.

DfES should ensure that theextension of ‘wraparound’ school-based childcare is fullyaccessible by families with adisabled child over five years old,as this is rolled out.

The rhetoric of mainstreamingneeds to be followed up by specificaction to include disabled children

Many families with disabled childrenwould like to access mainstreamservices – including early education,play and childcare – with adequatesupport where needed. This not onlybenefits many disabled children,enabling them to take part inactivities in the same way as theirnon-disabled peers, but non-

disabled children also benefit fromgrowing up in a diverse andinclusive environment.

There is widespread, but oftenanecdotal, evidence that familieswith disabled children are facingbarriers to accessing mainstreamservices and activities. The barriersinclude a lack of outreach bymainstream services and a lack ofcapacity in some mainstream servicesto meet disabled children’s needs (or a perception by the services thatthey cannot meet these needs). The specific capacity gaps includeworkforce limitations and a lack of suitable premises and equipment.Another barrier is a lack ofinformation for parents aboutservices and activities that are available.

In a school context, there is greater awareness of the benefits of inclusion but variable quality ofteaching of pupils with SEN. The inclusion agenda has had littleimpact on the proportion of childrenwith SEN in mainstream schools, oron the range of SEN needs cateredfor. Few schools systematicallyevaluate their provision for childrenwith SEN153.

It therefore remains uncertainwhether the new landscape ofmainstream children’s services – inthe public, voluntary and communitysectors – is meeting the needs ofdisabled children. In particular, thereremains a lack of systematicevidence on the impacts of

153 Ofsted (2004) “Special educational needs and disability: towards inclusive schools”.

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mainstream services and activities ondisabled children, or whether theyare indeed being effectivelyincluded.

Box 5.3: Mainstreaming andthe DDA

Enabling disabled children andtheir families to be included inmainstream life is beneficial forthem and for the rest of society.The Disability Discrimination Act1995 Part 3 reflects this by statingthat disabled children are entitledto reasonable access to goods,facilities, premises and services.

Since October 2004, servicesprovided by governmentdepartments, local authorities,charities and the voluntary sector,hospitals and clinics, shops, pubs,banks and hotels have beenrequired to make anticipatoryreasonable adjustments to includedisabled children.

The SEN and Disability Act 2001introduced a new Part 4 to theDisability Discrimination Act. This applies the DDA duties toeducation and associated services,including early years. Part 4requires all schools to makereasonable adjustments so thatdisabled pupils have access to thecurriculum, physical environmentand information. All early yearsprovision is now covered by eitherPart 3 or Part 4 of the DDA.

The public sector duty in the draftDisability Discrimination Bill will

mean that all public authorities will be required to give dueregard to the need to promoteequality of opportunity fordisabled people as they plan anddeliver policy initiatives. This willbe to ensure that whenever thesecould have a material impact, theneeds and circumstances ofdisabled children and adults areproperly addressed. The duty willalso require disabled children andyoung people to be involved in the development and deliveryof policy.

In Scotland, the Education(Additional Support for Learning)(Scotland) Act 2004 requireseducation authorities to provideadditional support to disabledchildren under three years who have been referred by ahealth board.

Recommendation 5.3: Evaluation of children’s services

DfES should, from 2005 onwards,require all national evaluations ofchildren’s services – such as theNational Evaluation of Sure Start(NESS) – to assess impacts onfamilies with disabled children,including families from minorityethnic communities, andrecommend specific actions toaddress barriers to their inclusion.

DH and DfES to develop guidance,from 2005 onwards, forevaluations of children’s services



carried out at a local or regional level to ensure they take accountof the needs of the local disabledchildren’s population.

5.3 Meeting families’ needsOverarching vision for meetingfamilies’ needs:

by 2014, all families with youngdisabled children to have the levelof family support they need toenable them to function as a familyand to care for their disabled child.

Families with young disabledchildren have additional needs.These needs may be specific to thechild – such as assistive technology –or be part of the wider implicationsof having a disabled child – such asneed for home-based support.Importantly, different families willhave different levels of need, fromrelatively little – such as signpostingto information sources – to needsthat are significant and long-term.

Many families with disabledchildren are struggling owing tolack of family support

Families with disabled children oftenface particularly high stress andfamily breakdown owing to theincreased pressures of looking aftera disabled child. If a child has

difficulty in sleeping or in behavingin a way that allows them to join in with mainstream activities,parents can often face significantanxiety and social isolation154.Parental stress resulting from a lack of local support has been givenas a reason for children being placed in residential provision155. Sleep problems can also impact on the child in terms of lack ofconcentration and increasedprobability of behaviouraldifficulties during the day156 .Of 1,100 parents with a severelydisabled child, 56% said that ‘helpwith behaviour’ is a key need and61% of these said the need wasunmet or partially met157.

Parents would also like support with everyday activities forthemselves, such as having time tohave a bath, go shopping and sleepwithout disturbance, especially iftheir child has very high levels ofneed or if they have more than onedisabled child158. Sometimes whatfamilies want is an extra pair ofhands to enable them to do thingsas a family. In addition, siblings’ own quality of life may be adversely affected if parents are not sufficiently supported. Siblings may also need specialattention themselves.

154 As many as 45% of children in special schools can wake up regularly at night comparedwith 13% of children in mainstream schools.

155 Morris, J et al. (2002) “At home or away? An exploration of policy and practice in theplacement of disabled children at residential schools”. Children and Society, 16, 3-16.

156 Lancioni G, E et al. (1999) “Review of strategies for treating sleep problems in personswith severe or profound mental retardation or multiple handicaps”, American Journal ofMental Retardation, 104, 170-186.

157 Beresford, B (1995) Expert opinions: a national survey of parents caring for a severelydisabled child. Bristol: Policy Press.

158 Strategy Unit consultation with parents of young disabled children.

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At present, family support remainspatchy. Government needs tosupport local providers to enablefamily support to be provided on a more consistent basis. This reportwelcomes the DfES fundedfeasibility study into a NationalCentre for Early Intervention. If implemented, such a centre couldbe an important hub of training andevaluation of early interventions to help guide service provision foryoung disabled children and thosewith special educational needs.

The Government published theChildren’s NSF in September 2004,setting out the following nationalstandard for family support fordisabled children: “children andyoung people who are disabled or who have complex health needsreceive co-ordinated, high-qualitychild and family-centred serviceswhich are based on assessed needs,which promote social inclusion and, where possible, which enablethem and their families to liveordinary lives.”

The Strategy Unit endorses thisstandard as a means of emphasisingneed for families to receive supportservices through multi-agencypackages of care.

Family support covers a wide rangeof services, from basic informationto specialist interventions

Early family support strengthensparental skills to meet the needs oftheir disabled child. ‘Family support’refers to a range of interventionsand provision some of which arehighly specialised and some of whichare basic including informationprovision. When deliveredeffectively, these interventions canhelp prevent families’ life chancesbeing disadvantaged, by supportingfamilies to meet their own needs.

• Information, peer support andcounselling: these are highlyvalued by parents159, and can have a positive effect on stresslevels160. But the availability ofinformation is variable and manyparents are uncertain where to gofor advice. Counselling and peersupport are also valued, especiallyby families of children with highneeds. Families say that emotionalsupport has enabled them to better meet the needs of their children161.

• Support with caring: all parentsneed a break from caringsometimes. Parents of disabledchildren can find this difficult iffamily or friends are unable tohelp, or if there is a shortage ofdaycare provision for their child.But around one-third of parentswith disabled children wait over


159 Baine et al. (1995) “Chronic childhood illnesses: what aspects of caregiving do parentsvalue?”, Child: Care, Health and Development, 21, 291-304.

160 Beresford, B A (1994) “Resources and strategies: how parents cope with the care of adisabled child”, Journal of Child Psychology & Psychiatry, 35, 171-209.

161 Strategy Unit consultation with parents.


a year for a short break service162.And families with very youngchildren163, children with complexneeds164, “challenging”behaviour165 and Autistic SpectrumDisorders166, as well as those fromminority ethnic communities167,are less likely to have short breaks.Some families have access todomiciliary carer who comes tothe family home to help care for adisabled child; however, the careris often unable to care for any ofthe other children which reducesthe break provided for theparents. The National ServiceFramework for Children highlightsthe importance of supportingfamilies with disabled children. It points out that packages of care

should be responsive to the needsof the whole family including thefather and siblings.

• Sleep and behaviour programmes:these can help families buildcoping strategies if their child hassignificant problems with sleepingor has behavioural needs. Sleepscheduling and bedtime routinescan reduce sleep interruptionswith benefits for both the parentand child168 including improvedchildren’s daytime behaviour,maternal sleep patterns andmental health169. Behaviouralprogrammes have been shown to address behaviour problems as well as reduce stress anddisruption to family life170.

162 Mencap (2004) Breaking Point: A report on caring without a break for children andadults with severe or profound learning disabilities.

163 Chadwick O. Beecham J. Piroth N. Bernard S. Taylor E. (2002) Respite Care for Childrenwith Severe Intellectual Disability and their Families: Who Needs It? Who Receives It?Child and Adolescent Mental Health 7 (2): 66-72.

164 Mencap (2004).165 Heslop P., Byford S., Weatherley H. (2003) Better Rewards: The costs and effectiveness of

employing salaried support carers to reduce waiting lists for short-term care. SharedCare Network. Bristol.

166 Tarleton B. Macaulay F. (2002) Better for the break?, Barnardos. Basildon, Essex.167 Hatton, C., Akram, Y., Shah, R., Robertson, J. & Emerson, E. (2002). Supporting South

Asian families with a child with severe disabilities. Institute for Health Research,Lancaster University.

168 Lancioni et al. (1999); Wiggs, L and France, K (2000) “Behavioural treatments for sleepproblems in children and adolescents with physical illness, psychological problems orintellectual disabilities”, Sleep Medicine Reviews, 4, 299-314; Lucas, P et al (2002) “Dobehavioural treatments for sleep disorders in children with Down’s syndrome work?”,Archives of Disease in Childhood, 87, 413-414.

169 Quine L (1993) Working with parents: the management of sleep disturbance in childrenwith learning disabilities. In: Kiernan C (Ed) Research to Practice? Implications ofresearch on the challenging behaviour of people with learning disability. BILDPublications, Kidderminster; Wiggs L & Stores G (2001) Behavioural treatment for sleep problems in children with severe intellectual disabilities and daytime challenging behaviour: effect on mothers and fathers. British Journal of HealthPsychology 6, 257-269.

170 Feldman and Werner (2002) “Relationships between Social Support, Stress and Mother-Child Interactions in Mothers with Intellectual Disabilities”, Journal of Applied Researchin Intellectual Disabilities, 15: 4, 314-323.

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• Home-based learningprogrammes171: there are agrowing number includingPortage, Early Bird and Lovaas.Portage aims to improve a child’s development of play,communication, relationships and learning through a homevisitor working with parents. Earlyevaluations of portage schemes inthe UK indicate positive results inchild development172 and familieshave reported high satisfactionwith the service173. Early Bird isaimed specifically at children withAutistic Spectrum Disorders.

One approach for which there is considerable evidence is theprovision of a key worker. Families with a key worker reportless isolation, higher morale andbetter relationships with serviceproviders174. However, less than a third of families with severelydisabled children have a keyworkerservice175. Key workers have three main aspects to their work:information, communication and care coordination176.They ensure that families have agood understanding of how serviceswork, what they are entitled to and

information about their child’sneeds. The keyworker alsocommunicates between services andcoordinates assessments and earlyintervention. Standards for key worker provision have recentlybeen developed by the CareCoordination Network177.

Effective keyworker provision caninclude telephone and email tocomplement home visits. The EarlySupport Programme estimates thatestablishing new key worker servicesfor children with complex andmultiple difficulties under threewould involve an equivalent of one-and-a-half to two additional full-timeequivalent staff in a local area.Families with high needs, because of severe impairment or othercircumstances, should be givenpriority access to a keyworker.Eligibility criteria for the serviceshould be transparent and developedin partnership with local serviceproviders and parent support groups.

The Strategy Unit supports the roll-out of the Early Supportprogramme stated in the ChildPoverty Review 2004, subject toevaluation. It will be important that


171 The possible National Centre for Early Intervention could have an important role inmonitoring, evaluating and disseminating information on the relative merits of differentprogrammes.

172 See, for example, Cameron, RJ (1982) “Working Together: portage in the UK”, cited inDaly et al (1985) Portage: the importance of parents, NFER-NELSON.

173 Strategy Unit consultation with parents. 174 Greco, V, Sloper, P and Barton K (2004) Care coordination and key worker services for

disabled children in the UK, SPRU University of York.175 Greco, V and Sloper, P (2004) “Care coordination and key worker schemes for disabled

children: results of a UK wide survey”. Child: Care, Health and Development, 30, 13-20.176 Department for Education and Skills (2004) Professional Guidance, Early Support

Programme.177 See www.york.ac.uk/inst/spru/ccnukstandards.htm.


workforce capacity is strengthenedto support the dissemination of theprogramme materials.

Recommendation 5.4: Keyworkers

From 2006, Joint Area Reviews of Children’s Services should, inconsultation with local authorities,consider including provision of a keyworker to families as a keyperformance indicator of localsocial care, education and healthservices. The indicator should be consistent with the NationalService Framework recommen-dation on keyworking. DH andDfES to lead.

From 2006, Children’s Trusts shouldensure that all families have accessto clear information about localservices and support in both thestatutory and voluntary sectors,through, for example, the EarlySupport Programme materials anda local website. DfES to lead.

Services can be skewed towards later intervention rather thanpreventative work

Social care is the main source of thefamily support that families withdisabled children value. Localauthorities develop thresholdcriteria to determine which disabledchildren’s needs will be met, toallocate tight resources betweencompeting priorities.

Box 5.4: Eligibility criteria canexclude disabled children withsignificant needs

In 2003, 29,000 disabled childrenreceived support from socialservices178. One example of localauthority eligibility criteria isgiven below:

“Of children with a physicaldisability, only those who areunable to walk without aids or assistance are eligible forassistance … The following children are noteligible for support:

• children who have a mild ormoderate learning disability,where this is the only disability;

• children with ADHD, ADD,Oppositional Defiance Disorderor similar behavioural diagnosisunless this is secondary to asubstantial and permanentdisability;

• children with mental healthdifficulties unless this issecondary to a substantial andpermanent disability.”

Local eligibility criteria can result ina ‘postcode lottery’ of provision –services are provided on the basis ofwhere people live and on individualparents’ ability to lobby forprovision179 – rather than on anentitlement based on need.

178National Statistics (2004) “Child in Need in England: Results of a survey of activity andexpenditure as reported by Local Authority Social Services’ Children and Families Teamsfor a survey week in February 2003”.

179Audit Commission (2003) Services for Disabled children: A review of services for disabledchildren and their families.

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Social care budgets can also become skewed towards later, moreintensive (and often more expensive)interventions for older children, suchas residential placements for childrenfrom about nine years onwards.Costs of residential care for disabledchildren can range from £200 to£500 per night; and out-of-countyplacements for small numbers ofchildren can dominate total socialservices spend on disabled children,with implications for the budgetavailable for early intervention andyounger children with other needs.

Box 5.5: County council spend ondisabled children

A county council in Englandprovides services to 729 disabledchildren in its area. But 40% of itsdisabled children’s budget180 isspent on 27 children in long-termresidential placements. Provisionfor these children costs an averageof £46,336 each per year.

The other 702 disabled childrenreceive services from theremaining budget, includingoutreach, break holiday, portageand short term breaks. Short termresidential breaks cost on average£6,082 per child per year. Holidayscost £750 per child.

Earlier intervention could enablechildren’s needs to be met within a mainstream setting and at homewith their family

It is possible that some disabledchildren and young people couldavoid long-term institutionalisationif adequate and early preventativesupport was provided to them and their family. This support couldinclude family support services suchas behaviour programmes, home-based support services and adequateshared care arrangements. TheChildren’s NSF includes standards onfamily support, early interventionsand break provision, which areimportant benchmarks for this area.

The switch to early, preventativeservices could enable families to staytogether, avoid the disadvantages oflong-term residential settings andmay also lower costs over the longrun. This could free up resources formore preventative work with awider group of children. Moreevidence is needed to investigatethe extent to which early familysupport can contribute to less long-term residential care provision and the extent to which this meetsfamilies’ and children’s needs – it is vital that the well-being of thechild and family is not jeopardisedby this re-structuring. More researchis also needed on the overall costimplications and whethertransitional funding is required tosupport children already inresidential placements while re-investing in preventative workwith younger children.


180 Excluding staff salaries.


Recommendation 5.5:Early intervention

Phase one:

By 2006, DfES, with support fromDH, should identify the mechanismsby which local authorities can shiftthe emphasis of expendituretowards early intervention, in a way that promotes the well-being of disabled children and their families.

DfES and DH should establish:

• whether this switch of emphasiscan be achieved with existingspend or whether transitionalfunding is required whileservices are restructured; and

• whether the well-being ofdisabled children and theirfamilies is being promoted,including follow-up studies inselected areas.

The mechanisms identified, alongwith examples of best practice,should be disseminated at thenational level.

Phase two:

If the analysis from Phase oneindicates that transitional fundingis required, DfES, with supportfrom DH, should assess the casefor an ‘invest-to-save’ pilot to beincluded as part of the SpendingReview 2006 bidding process. Ifthis was to be consideredworthwhile, the pilot areas would

need to have a multi-agency strategy for early and holisticfamily support starting in the early years, involving parents anddisabled children. And the pilotswould need to be fully evaluatedto establish whether families’ andchildren’s overall well-being hasbeen promoted.

Depending on the pilot outcomes,DfES, with support from DH,might then consider rolling out anational fund to providetransitional funding to re-structureservices towards early familysupport provision for families withyoung disabled children.

Disabled children riskdevelopmental delay owing to lack of specialist equipment

Specialist equipment – includingcommunity equipment,communication aids, wheelchairservices and prosthetics – can bedelayed and may not be adequatelyadapted as the child grows181.Waiting for equipment can mean it does not fit the child whenit does arrive, with developmentalimplications for the child. This isimportant given the increase in numbers of technology-dependent children.

In a survey of 3,000 families with a severely disabled child, 77%reported unmet needs forcommunity equipment, to help with,

181 Audit Commission (2003).182 Beresford, B (2003) Community equipment: use and needs of disabled children and their

families, University of York.

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for example, eating, going to thetoilet and sleeping182. Families fromminority ethnic groups, those withpre-school children and thoselooking after their child in the homereported greatest unmet need.

Box 5.6: Developmentalimplications of delays inequipment

A 3 year old child who needed apiece of equipment – an adaptedtoilet seat – was refused a nurseryplace because she was not yettoilet-trained. In this way, a delayin providing a simple piece ofequipment meant this child facedlonger term developmental delayand barriers to social inclusion.

Equipment should be provided todisabled children promptly based on a multi-agency assessment thatoccurred as soon as possible afterthe child’s needs were identified.The DfES-sponsored CommunicationAids Project (CAP) offers aninteresting model. It supportsschool-age children facingsignificant speech, language andcommunication difficulties andoperates on a referral basis, withequipment matched to individualneeds following a specialistassessment. The project was recently independently evaluated,with positive results.

Children grow quickly and actionshould be taken to ensureequipment can be re-used and

replaced, subject to adequatemaintenance.

Recommendation 5.6: Equipment

DH should assess, by 2006,whether integrated communityequipment services,communication aids provision andwheelchair services are able todeliver the NSF recommendationon children’s equipment, and, if not, make recommendations for improvement.

From 2006, the Joint Area Reviewshould consider, in consultationwith local authorities, usingequipment services as a keyperformance indicator of localsocial care, education and healthservices. The indicator should beconsistent with the NationalService Frameworkrecommendation on equipment.DfES and DH to lead.

Many families with disabledchildren live in unsuitable housing

As many as three out of fourfamilies with disabled children livein unsuitable housing183, a higherfigure than for the population ingeneral184. This means that familiesare put under considerable stressand may not be able to meet theirchild’s needs – even basic needs suchas playing, joining in with family lifeand moving around the house. Lack of suitable housing can alsomake families more dependent onexternal care and support services.


183 Oldman, C and Beresford, B (1998) “Homes unfit for children: Housing, disabled childrenand their families”, Bristol: Policy Press.

183 Beresford, B and Oldman, C (2002) “Housing matters: National evidence relating todisabled children and their housing”, Bristol: Policy Press.


This is unlikely to be cost-effective,and reduces the independence ofthe whole family, including thedisabled child. And as a child growsbeyond the early years, housingadaptations become increasinglyimportant as, for example, liftingbecomes more difficult. Bothmiddle-income and low-incomefamilies report housing problems.Housing problems are not just anissue for children with physicalimpairments. Families where thechild has behaviour or learningdifficulties are more likely to haveproblems with where the house is located or safety issues within the house.

In one survey185, one in ten familieswith severely disabled children hadreceived some financial assistancewith housing adaptations. This wastypically a Disabled Facilities Grant(DFG). A third of these families alsomade their own contribution to thecost of the adaptations. And amongfamilies assessed as needing housingadaptations, a third had beenunable to meet the contributorycosts required and the adaptationhad not been carried out.

Recommendation 5.7: Housing

Recommendation 4.9 in Chapter 4should also apply to families withdisabled children and/or disabledparents to ensure that thesefamilies’ housing needs are met.ODPM to lead with support from DfES.

5.4 Services ‘fit for purpose’Overarching vision for services ‘fit for purpose’:

by 2020, early years services arecapable of meeting the needs ofdisabled children through a trainedworkforce, effective joint workingand a clear understanding of theneeds of disabled children in their area.

Early years services need to continuedeveloping and strengthening inorder to meet the needs of youngdisabled children in specialist andmainstream settings. This requires a workforce with the necessaryrange and depth of competencies,effective joined-up workingbetween agencies and informationto enable service planning. It alsorequires incentives for local serviceproviders to meet proactively theneeds of disabled children.

The public sector duty to promotedisability equality will require futurepolicies to be scrutinised to ensurethey promote, rather than diminish,opportunities for disabled children.The forthcoming duty means that aproactive approach will be taken topromoting equality of opportunityfor disabled children and will inmany situations require improvedjoint-working to deliver theoutcomes identified in DisabilityEquality Schemes.

185 Beresford and Oldman (2002).

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The workforce needs strengtheningif services are to meet disabledchildren’s needs

The children’s workforce is not fully able to meet the needs of thechanging disabled children’spopulation. There are shortages ofcertain professionals such as socialworkers and speech and languagetherapists. There is also a need tobuild up core competencies in thehealth and education workforce186,187 regarding expected childdevelopment and behaviour, andearly indications of specialeducational needs.

Parents of disabled children reportsatisfaction with specialist workerssuch as health visitors withcompetencies to support disabledchildren188. Early intervention bypaediatric therapists – such asspeech and language therapists –can have significant benefits for the cognitive and behaviouraldevelopment of young children.

Box 5.7: Accredited nurseries inspeech and language therapy

The ‘I CAN’ model of early yearseducation integrates speech andlanguage therapy within a pre-school educational setting. Twodifferent models of integrationhave been evaluated189 for

children with severe and specific speech and language difficulties. In both cases, parental involvementis important and the aim is tosupport the children’s inclusion inmainstream provision at the end of the intervention.

The I CAN children improved incomparison with peers attendingroutine NHS provision, in theirproductive vocabulary, languagecomprehension and adaptive andsocial behaviour. The childrenwere less disruptive as a result ofthe intervention. In addition, the I CAN provision was found to berelatively cost-efficient. This modelis promising in terms of earlyintervention and inclusion ofdisabled children and those withSEN in mainstream provision.

It will be important to planstrategically the competencies andworking models required in theearly years workforce to use peopleand resources more effectively. Forexample, consideration of therapyprovided in group settings as well asindividually; a “consultative” modelof specialists providing specialistinput into mainstream servicesrather than dealing exclusively withindividual cases; and a local, floatingresource of specialist child health


186 See recommendation in Department of Health (2004) The Chief Nursing Officer’s reviewof the nursing, midwifery and health visiting contribution to vulnerable children andyoung people.

187 See recommendation in DfES (2004) Removing the barriers to achievement: TheGovernment’s strategy for SEN.

188 Strategy Unit consultation with parents. 189Law, Dockrell et al (2001) The I CAN Early Years Evaluation Project, City University and

the Institute of Education.


visitors who can be allocated tofamilies with additional needs.

Every Child Matters has set out aseries of workforce reforms todeliver the vision for children’sservices. A Children’s Workforce Unithas been established to develop apay and workforce strategy for thechildren’s workforce. There will alsobe a Sector Skills Council for SocialCare, Children and Young People tobring together those working withchildren and young people in fieldsrelated to social care.

In England, the DfES and DH aresupporting the establishment of aChildren’s Workforce DevelopmentCouncil to develop qualification and training frameworks. The Council will work withemployers, training and educationproviders to supply training for thechildren’s workforce to improvecapacity and workforce quality.

These reforms could also be linkedto the possible National Centre forEarly Intervention. The centre couldbe a national centre for accreditedtraining in early intervention.

Recommendation 5.8: Workforce

DfES, with DH, should ensure that the children’s workforce iscapable of fully meeting the needsof disabled children, primarilythrough working with theChildren’s Workforce DevelopmentCouncil. This work should take fullaccount of the changing profile of

disabled children, and should include the full spectrum ofprofessionals in contact withdisabled children includingprimary and secondary healthcareprofessionals. Incorporate intocurrent work.

Service providers still do not work together effectively or plan strategically

There remains a lack of joined-upworking and strategic planning onthe ground, leading to gaps inservice and information provision –particularly between health, socialservices and educationdepartments190.

This lack of strategic planning andworking means that services can failto meet the changing needs of thedisabled children’s population. Thereis significant unmet need for keyservices by families from minorityethnic communities and by familieswith children with complex needs.Poor cross-agency working can alsocreate artificial barriers, such asprovision of transport only betweenschool and home restricting accessto leisure.

Multiple assessments remain thenorm, although some areas havemade progress on developing sharedassessment procedures. Overall, thelack of multi-agency working andplanning remains a barrier tomeeting the needs of disabledchildren and their families.

190 See, for example, Audit Commission (2003).

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Some Children’s Trusts pathfindersare focusing on services for disabledchildren. This is promising, althoughit is too soon to tell what theimpacts are for families withdisabled children. In addition, the public sector duty to promotedisability equality will requireimproved joint working andstrategic planning to meet outcomes set out in DisabilityEquality Schemes.

Box 5.8: Case study of Children’sTrust pathfinder

Nottinghamshire Children’s Trustpilot is focusing on disabledchildren and young people andtheir families and carers. It isplanning to develop an IntegratedPathway that is structured aroundthe milestones that occur duringthe journey a child and familymakes through local services. The milestones are informationservices, referral, assessment,service planning, service deliveryand service review. In addition,Mansfield has an ‘invest to save’funded multi-disciplinary team fordisabled children.

The Common AssessmentFramework is aiming to establish acore set of information that can beshared between agencies. It will beimportant that the Frameworkmeets the specific needs of disabledchildren because virtually alldisabled children are in contact withmore than one agency.

The Strategy Unit welcomes theprovision in the Children Bill forJoint Area Reviews of children’sservices to report on the extent towhich local services work togetherto improve the well-being ofchildren and young people.

Recommendation 5.9: Children’s Trusts

Local authorities, PCTs and, fromtheir inception, Children’s Trustsshould work together and withtheir partners to strategicallycommission services for disabledchildren, including early years andthe transition into school, with aview to meeting the NSFstandards. This process should takefull account of the needs of alldisabled children in their area,including those who do not meetcurrent eligibility criteria. DfESand DH to lead.

There need to be robust ways ofensuring standards of serviceprovision improve over time

Apart from family support in socialcare performance indicators, thereare no national public sector targetson provision or outcome fordisabled children. This means thatthere is no incentive for local serviceproviders to prioritise services fordisabled children.

However, the Disability EqualitySchemes required under the newpublic sector duty will require publicauthorities to assess the extent towhich their services meet the needsof disabled people. This is likely



to include measures of whetherdisabled people and children canaccess services and the extent towhich services contribute towardsthe outcomes required.

There are also some Local PublicService Agreements between localauthorities and central governmentthat are focused on disabledchildren (see Box 5.9 below). A local Public Service Agreement is a local authority’s commitment to central government to deliverspecific improvements inperformance. The agreement also reflects government’scommitment to reward and supportthese improvements. These arepromising mechanisms for improvingoutcomes for disabled children intheir families.

Box 5.9: Examples of Local PublicService Agreement targetsfocusing on disabled children

Halton Borough Council“Providing children withdisabilities with increased choiceto a range of short-term breaks”.

Northumberland County Council“Providing children withdisabilities with increased choiceand access to short breakovernight care”.

West Berkshire Council “To increase the number of children with SpecialEducational Needs/Disabilityincluded in specialist and mainstream setting”.

Cambridgeshire County Council “To improve parent satisfactionwith services for children with disabilities/specialeducational needs”.

There are also proposedarrangements for Joint Area Reviews of children’s services toinvolve a number of inspectoratesincluding Ofsted, the HealthcareCommission, the Commission forSocial Care Inspection and the AuditCommission. Joint Area Reviews will report on the well-being of all children and young people in alocal area. They will cover universal,preventative and specialist servicesand particular attention will begiven to joint action by local serviceson behalf of those groups ofchildren and young people who arevulnerable to poor outcomes.Disabled children will be covered indetail in every review. This is awelcome proposal that should givean incentive to service deliverers tomeet the needs of disabled childrenand young people in their area.

The relationship between the JointArea Review and the ComprehensivePerformance Assessment will beimportant as a driver for overallimprovement in performance withrespect to disabled children andyoung people, particularly if itidentifies the effectiveness ofDisability Equality Schemes inimproving outcomes for disabledchildren. The Disability DiscriminationBill public sector duty will cover

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inspection and audit bodies so theywill be expected to promote disabilityequality through their work.

Recommendation 5.10: Joint Area Reviews

The Strategy Unit supports theproposed inclusion of disabledchildren and young people as aspecific theme within the JointArea Reviews of children’s services.

DfES and DH, from 2006 onwards,to consider how performance indisabled children’s services can bereflected in the Joint Area Reviewsof children’s services and theannual ComprehensivePerformance Assessment rating.

There is insufficient data ondisabled children

Local information on the needs offamilies with disabled children –including age, ethnicity, complexityof needs – is not always sharedeffectively across agencies. Oftenonly information about families whomeet social services eligibility criteriaare collected rather than the widerpopulation of disabled children. This makes it difficult for localservices to plan and commissioneffectively for disabled children’sneeds191. Assessing impairment inthe under-fives can be difficultbecause some conditions arechallenging to diagnose when thechild is very young192. However, theearlier that information is collectedabout the additional needs of

children, the better services can bedesigned to meet their needs. The new duty on public bodies topromote disability equality willrequire sufficient evidence gatheringto effectively inform both actionplans and measure outcomes.

There are two levels of informationthat can be used to plan services and understand the changing needs of children. The first is a basiclevel of information on numbers,age, ethnicity and impairment. The second is a more detailed levelof information, likely to be providedby families themselves, of thefamily’s needs, current services theyuse and a record of unmet need.

Box 5.10: Case study of theCompass database

Brighton and Hove City Counciland local health services fund The Compass as the area’s officialdisability register. The database is managed by a voluntary sectorprovider – aMAZE – which alsooffers advice and support tofamilies with disabled children.The database is voluntary with anincentive of a free leisure pass tofamilies who register. Theinformation is used to strategicallyplan services in the area that takeaccount of the profile of the localchildren’s population and theiradditional needs. Families who donot meet social services eligibilitycriteria are also able to register.


191 See Audit Commission (2003).192 Gordon, D., Parker, R et al (2000) Disabled Children in Britain: a re-analysis of the OPCS

disability surveys. London: The Stationery Office.


Initiatives are being planned to improve data on children. Local authorities are alreadyrequired under the Children Act1989 to establish a register ofdisabled children. Some have usedinnovative ways of collecting datathat provide a multi-agencydatabase that can be used tostrategically plan services (see Box5.10). But many have found itdifficult to maintain a database. The introduction of the new ChildHealth Promotion Programme, as part of the NSF on Children’sServices, offers new opportunities to ensure that disabled children’sphysical, emotional and socialdevelopment is regularly assessedand provision made that isappropriate to their needs.

The Children’s Bill enables theSecretary of State, subject to“affirmative resolution” inParliament, to require databaseswith basic information on allchildren to be established. Thesecould be at a local, regional ornational level. But it remainsuncertain whether informationwould be collected about additionalneeds of disabled children thatwould enable services to be planned effectively.

Recommendation 5.11: Data collection and information sharing

DfES and DH, 2005 onwards,should work with LocalAuthorities, PCTs and Children’sTrusts to look at ways tocoordinate basic data on thenumber and needs of disabledchildren in the local area withinexisting resources. The data shouldinclude a full audit of the needs ofchildren in the area, irrespective ofwhether children meet currenteligibility criteria.

DfES and DH should ensure thatinformation on the situation andneeds of disabled children areeffectively included in the designand implementation of thedatabases resulting from theChildren Act 2004. The databasesto be designed to enable nationalstatistics on disabled children tobe compiled readily. Incorporateinto current work.

DfES and DH should ensure thatthe Common AssessmentFramework fully takes the needsof disabled children and youngpeople into account in its design.Incorporate into current work.

125TRANSITION TO ADULTHOOD

Summary

The benefits of effective early years intervention will be lost if disabledyoung people’s transition through childhood and into adulthood is notmanaged effectively. There are particular barriers for two groups:

• those with the highest level of need who may be offered inappropriatesegregated adult services (or in some cases be offered no support at allbecause they are seen as ‘too disabled’ for local provision); and

• those with less significant needs but little entitlement to additional support.

There are three key ingredients needed for effective support for disabledyoung people, to ensure that they enter adulthood able to participateand be included.

• Planning for transition focused on individual needs.

• Continuous service provision.

• Access to a more transparent and appropriate menu of opportunities and choices.

Over time, individualised budgets will allow seamless transition fromchildhood to adult services, providing disabled young people and theirfamilies with choice and empowerment.

In the shorter term:

• children’s and adult services should overlap to improve continuity andremove the “cliff-edge” in provision experienced by many disabledyoung people;

• the role of families needs to be recognised and supported in a way thatempowers disabled young people and their parents;

Chaper 6: Transition to adulthood


Section 6.1 of this chapter outlinesthe current situation faced bydisabled young people at thetransition into adulthood. Sections6.2, 6.3, 6.4, and 6.5 proposechanges to improve continuity,family support, personalisation, andfuture opportunities respectively.

6.1 What is the currentsituation?Becoming an adult and moving intoadult services

Becoming an adult affects manyaspects of young people’s lives

Being on the cusp of adulthoodshould be an exciting time. Leaving compulsory schooling isaccompanied by decisions aboutfuture education and employment,and there are changes in family life,social networks and emergingsexuality to contend with. Becoming an adult is also aboutincreased independence and a neworientation in leisure and culturalactivities, housing situation, andhealth care needs193.

Disabled young people faceadditional barriers that affect their move into adulthood and intoadult services

Disabled young people hope for the same things as other youngpeople; to travel, get a good job,start a family, and liveindependently. They want a voice, a leisure and social life, and to beinvolved as active, valued citizens194.However they also face disablingsocial, attitudinal and environmentalbarriers, that can cause disruptionand anxiety, and delay or evenprevent the achievement ofindependent living and socialinclusion. The complexity of atransfer from services provided tochildren to services provided toadults also affects many youngpeople. Their relationship with theirfamily may also be more complex,particularly where parents have anon-going role in providing personalassistance and where disability-related allowances or benefits arean important contribution to thehousehold income.

• personalisation in planning will require increased access to advocacyand information; person centred planning approaches to be usedwidely; and a Connexions service committed and equipped to supportdisabled young people; and

• opportunities for disabled young people to improve their life chancesshould be provided through inclusion in further education andemployment preparation, and accessible mainstream leisure and cultural activities and youth services.

193 SCARE Research Briefing 04: Transition of Young People with Physical Disabilities orChronic Illness from Children’s to Adult’s Services.

194 NOP (2003) A survey of the views and experiences of young disabled people in GreatBritain, conducted by NOP on behalf of the Disability Rights Commission, DRC: London;Morris (1999) Hurtling into a Void JRF: York; and Heslop, P et al. (2002) Bridging theDivide at Transition: What happens for young people with learning difficulties and theirfamilies? BILD: Glasgow.

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Many disabled young people haveexperienced discrimination and have low expectations of theirfuture prospects

Disabled people at age 16 and 26are less satisfied with their lives and have lower subjective well-being than non-disabled people ofthe same age195. Many feel that they are not safeguarded a right to be part of the community, and to have choices196.

Box 6.1: What disabled young people say of theirexperiences in …

School: 20% of disabled youngpeople said that they werediscouraged from taking GCSEsbecause of their impairment, with 12% discouraged from taking A/AS levels and 12%discouraged from takingvocational qualifications.

Further or higher education: 60%of disabled young people who didnot enter further or highereducation said they believed theywould not have got the supportthey needed.

The labour market: 86% felt it washarder for disabled people to findwork, and 30% expected, by age30, to be earning less than otherpeople their age.

Leisure and social activities: 64% would have liked to play sport197

but found it difficult or impossible and 32% said that they had limited access to socialactivities because of theiradditional needs198.

Experiences in young adulthood area significant determinant of futurelife chances

Disabled people often do notachieve the qualifications that theycould at school owing to a range of factors – including negativeexperiences of schooling, lowexpectations from teachers, specialschools lacking an academicorientation, and a lack of educationprovision during hospital and otherabsences. A recent Ofsted report onSEN and disability found that mostmainstream schools are nowcommitted to meeting SEN as aresult of the Government’s revisedinclusion framework199. However thisinclusion framework continues tohave little impact on the proportionof pupils with SEN in mainstreamschools or on the range of needs for which mainstream schools cater. The admission to mainstreamschools of pupils with behaviouraldifficulties was found to be thehardest test of the inclusionframework. This is the group

TRANSITION TO ADULTHOOD

195 Analysis excludes those with learning impairments. Burchardt, T., (unpublished paper,work in progress) Fate and fortune: outcomes for young people at age 26 according todisability status at 16. Based on data from the 1970 Cohort Study.

196 Morris, J. (2001) ‘Social exclusion and young people with high levels of support needs,’Journal of Critical Social Policy Vol 21(2) pp.161-183.

197 Also see Sport England (2001) Disability Survey: Young People with a Disability and Sport London.

198 NOP (2003).199 Ofsted (2004) Special educational needs and disability: Towards inclusive schools. Ofsted.


particularly likely to fall out ofeducation at age 16.

Reducing the proportion of youngpeople not in education,employment or training (NEET) hasbeen identified as a governmentpriority, and is expressed in severalkey DfES Public Service Agreementsand long term targets200. By the ageof 21, people who are NEET aremore likely to be unqualified,untrained, unemployed, earning less if employed, a parent andexperiencing poor mental health201.As discussed in Chapter 2, disabledyoung people are considerably morelikely than non-disabled people tobe NEET, particularly from age 19when many will first transfer out of special school.

Becoming an adult is a long journey,but the legal transfer from child toadult services occurs when peopleare aged 16–19

Transition into adulthood varies, but can be a gradual shift towardsindependence spanning ages 13 to30 or later. The legal transitionsbetween child and adult services,however, occur between ages 16and 19. For example, young people

usually move from child to adulthealth services at 16; from child toadult social services at 18; and fromschool-based education to further orhigher education at 19. About 7%of the British population aged 16–19are covered by the DDA – 0.2 millionpeople – although many of thesewill not meet eligibility criteria forvarious services, particularly adultsocial care202. Estimates vary withwhat survey data is used, rangingfrom 6%–10% of men and 8%–12%of women aged 16–24 reporting aLLSI203. There is evidence thatprevalence of impairment amongyoung adults is increasing.

There is great variation inimpairment profile, but the evidencebase for this group is lacking

The nature of young people’simpairment is highly varied and theprofile is changing. Increasingnumbers of children with complexneeds are both surviving intoadulthood, and experiencingincreased life expectancy as anadult204. Significant increases in thediagnosis of ASD and mental healthproblems present particular issuesfor adult services to respond to205.

200 Godfrey, C. et. al (1999) Estimating the Costs of Being “Not in Education, Employment orTraining” at Age 16-18 DfES Research Report RR346.

201 HMT, DWP, DfES (2004) Supporting young people to achieve: towards a new deal for skills. TSO: London. Also discussed in Social Exclusion Unit (1999) Bridging the Gap:New Opportunities for 16-18 year olds Not in Education, Employment or Training,London: TSO.

202 Family Resources Survey 2002/3.203 General Household Survey (2001); Health Survey for England (2002).204 Glendinning C. et al. (2001) ‘Technology-dependent children in the community;

definitions, numbers and costs’ Child: Care, Health and Development, 27(4) 321-34. Betz,C.L. (1999) ‘Adolescents with Chronic Conditions: Linkages to Adult Service Systems.’Paediatric Nursing 25(5): 473-476

205 This is discussed in more detail in chapters 2 and 5.

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Significant gaps persist in theevidence at both the national andlocal level, and there is variation inthe definitions used206. Large-scalelongitudinal data sources thatfollow-up a large and representativesample of disabled young peoplewho transfer from child to adultservices need to be developed. Little research has diagnosed whatmodels of intervention work mosteffectively, for whom, and in whatcircumstances207, and few costbenefit analyses of the impact ofinterventions with disabled youngpeople have been carried out.There has also been relatively littlework with a holistic view oftransition, with young people withthe most complex needs and/or fromBME groups, or which focuses on the impact of the family ondisabled young people’s experienceof the transition towards adulthoodand independence208.

The service and policy context for disabled young people and their families

Three in four disabled young peoplebelieve they are under-representedin national policy and that the

Government is not interested intheir needs209.

While there has been progress inpromoting disabled young people’sopportunities in recent years210,enormous disadvantage remains.Recent years have witnessed asignificant focus in governmentpolicy on tackling social exclusion.However, when disabled youngpeople were asked about what‘social exclusion’ meant to them theissues they raised were somewhatdifferent to those that governmentpolicy has generally focused on and included:

• not being consulted or listened to;

• having no friends or finding itdifficult to maintain friendships;and

• being made to feel like a burden,with no contribution to make211.

There has already been a policyfocus on transition; there is now aneed to address implementation212.


206 This chapter considers disabled people and those with SEN, while recognising that thesetwo groups do not entirely overlap. Young people identified as having specialeducational needs (SEN) find that the definition (and any Statement of SEN) no longerholds currency in adult services.

207 E.g. there is little research specifically on the role of a ‘transition worker’.208 E.g. Heslop (2002).209 NOP (2003).210 E.g. duties introduced through SENDA, which improve the profile and inclusion of

disabled young people in education, and the health and social care standards in theChildren’s NSF.

211 Morris, J. (2001).212 This was emphasised by the Disabled Children Sub-Committee of the Association of

Directors of Social Services and with managers and practitioners working in transition, inconsultations with the Strategy Unit.


Box 6.2: Summary of recentpolicy and legislation addressingtransition

Integrated models of working andtransition protocols have beendeveloped, including:

• Connexions Partnerships;

• SEN Regional Partnerships;

• transition champions onLearning Disability PartnershipBoards;

• a Transition Working Group,co-ordinated by DfES; andFramework for Inspection ofChildren’s Services.

Personalisation of services hasbeen highlighted widely, including in:

• the Valuing People Strategy213;

• the SEN Strategy, ‘RemovingBarriers to Achievement’; and

• Additional Support for Learning(Scotland) Act214 .

Transition is on the agenda inhealth, social care and education,e.g. in:

• National Service Frameworks(NSFs)215;

• Children’s Trust Pathfindersincluding disabled people up to age 25;

• Direct Payments extended to 16and 17 year olds and familycarers; and

• range of education programmesand legislation, such as theEvery Child Matters green paper,Learning and Skills Act (2000);SENDA (2001); and the ExtendedSchools and WideningParticipation programmes. Some14–19 pathfinders are looking atthe move into supportedemployment. The Beattie report,Implementing InclusivenessRealising Potential, has had amajor influence on transitionpractice in Scotland.

Much of the wider policy concerning children and youngpeople has failed to include thosewith impairments

Despite the increased focus ontransition, there has been relativelylittle mention of mainstreaming therequirements of disabled youngpeople216. It will be important that

213 Valuing People have pilots in five local authorities, developing links between person-centred planning and transition.

214 This Act comes into force in Scotland towards the end of 2005, when it will place certainduties on education authorities for sharing information with other agencies.

215 The Welsh and English NSFs for children; the NSF for long-term conditions; and theEnglish NSF for mental health (which includes early intervention pilots with teenagers).

216 E.g. the Education five-Year Strategy, National Skills Strategy, Teenage PregnancyStrategy, and the Children’s Bill.

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this omission is addressed as futurepolicy is developed217. The publicsector duty – discussed earlier in thisreport – will have a role here.

What currently happens at transition

Young people with less significantimpairments are at risk of leavingschool at 16 without the skills tocompete in the labour market

Most disabled young people havecontact with at least some types ofservices, although the extent andnature of contact varies enormously.Young people with less severeimpairments (such as those withmild or moderate learningdifficulties, or communication ormental health problems) often have little or no contact withservices such as social care as theyare not deemed eligible, particularlyonce they are adult218. The lack of support that they receive onleaving compulsory education hasbeen raised as a factor in the highproportion of people with lesssevere impairments coming intocontact with the Youth JusticeSystem, experiencing homelessness,teenage pregnancy, drug and alcohol misuse and becoming NEET219.

Those with a higher level of supportneed often experience multipleassessments and service contacts,and end up in segregated provision

In contrast, young people with themost significant impairments tend to experience a delayed transition at 19, on leaving special school. They and their families canexperience difficulty co-ordinatingthe numerous services with whichthey come into contact. This processbecomes more intrusive andcomplex as the young personapproaches adulthood, whenchanges in entitlement result fromchange in age and not need, andthere are multiple, separate, butoverlapping assessment pathways.There are often delays in gettingadult services set-up and provision is likely to be age-inappropriate.They may end up in segregated,sometimes costly residential,provision, due to the lack ofalternative opportunities220.

6.2 ContinuityOverarching vision for deliveringcontinuity in service provision:by 2015, all disabled young peopleand their families will experiencecontinuity and co-ordination in theservices that they receive, as bothchildren and adults. This will result


218 A survey following up young people with mild learning disabilities in Aberdeen foundthat by age 22 just 20% were receiving specialist services, although 73% had problemswith daily living. (Richardson, S. and Koller, H. (1996) Twenty-Two Years: Causes andConsequences of Mental Retardation, Cambridge: Harvard University Press.)

219 Myers, F (2003) On the Borderline? People with learning disabilities and/or ASD insecure, forensic and other specialist settings, Scottish Office CRU: Edinburgh; Hawkins Cand Gilbert H Dual diagnosis toolkit: Mental health and substance misuse, Turning Pointand Rethink.

220 See the SU supplementary report, ‘The most marginalized groups’, published onwww.strategy.gov.uk.


from their own increased controland empowerment (throughmechanisms such as person-centredplanning and Individualisedbudgets) and through the improvedcommunication and sharing of information, responsibility and joined up budgets acrossagencies and between child andadult services.

Young people experience a lack of continuity in service provision at transition

A key problem leading to lack of continuity in provision acrosstransition stems from the differententitlement criteria and definitionsbetween child and adult services. A number of other barriers alsocontribute to the persistence of fragmented service delivery. These include:

• poor communication, tracking,and sharing of individual leveldata between agencies;

• a lack of local and regional datato inform planning;

• cultural and professional barriersbetween different serviceproviders, and restrictedperceptions of areas ofresponsibility;

• separate funding streams andtargets; and

• significant regional variation in performance and a lack ofdissemination of good practice.

Box 6.3: Case study of the barriers to integrated multi-agency working:

Development work had been on-going in one local authority to pilot an integrated transitionteam, involving transition workersresourced from a pooled budget.Despite agreement that the modelwas right, the pilot was suspendeddue to a failure to agree levels ofbudget contribution. This wascompounded by adult socialservices being made up of multiple budgets221.

There is some evidence on whatworks in integrating child and adult services

The achievement of effectiveperson-centred planning shouldsmooth young people’s transitionbetween services. There areexamples of good local practice in developing models of integratedworking between agencies andservices across transition – modelsrange from transition teams,through authority-wide transitiontraining to development ofinformation-sharing systems relevantto disabled young people attransition. Centrally held ‘processmaps’ – detailing how and wherestaff interface in supportingtransition – are present in some, butnot all, local authorities. As part ofthe SEN strategy Removing Barriersto Achievement, DfES is consideringproducing a Practice DevelopmentToolkit to evaluate and disseminate

221 Involving health on multi-agency boards and in the pooling of budgets was also cited byvarious professionals as problematic due to the fragmentation of Health Authorities intosmaller Primary Care Trusts (Strategy Unit consultation with transition professionals).

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best practice models to all thoseworking with young people ontransition planning, including theTransition Information Network andthe SEN Regional Partnerships222.

Box 6.4: Case study of integratedworking at transition

In Wiltshire, panel meetingsinvolve Child Health and DisabilityTeams, adult social services andConnexions to identify all youngpeople with SEN who are likely to need support beyond school-leaving age, and to make surethat they do not fall through the net223.

Local Area Agreements are discussedin Chapter 4 are one model for thecross-agency commissioning anddelivery of provision. Whatevermodel is used, the remit will includeincreasing the integration of childand adult services.

Children’s Trusts are beingestablished with the remit ofbringing integration and coherenceto the commissioning and localstrategic planning of children’sservices. It is essential that agencieswork together to address transitionand link with adult services,

including adult health provision and leisure and cultural activities. The Children Act enables Children’sTrusts to focus on relevant disabledyoung people up to age 25,including those with complex healthand social care needs for whom thetransfer to appropriate adultprovision has not been completed.This is already happening in someChildren’s Trust pathfinder areas,such as Bolton. Such an approach is central to a key issue raised inrecent consultations with parentsand providers around the extendedtime-scale of transition. Connexionshave a remit to include disabledyoung people up to the age of 25 who are not ready to fully access adult provision, and it will be essential that the Connexions Service, as proposed in Recommendation 6.7, is able to fulfil this remit224.

Recommendation 6.1: Young people and their familiesneed to experience continuity in delivery from child and adult services and from different agencies

• Short term: Within existingbudgets, DfES should identify, by 2006, different models


222New guidance, called Partnership Matters, has been drawn up by the Scottish Executivefor colleges, social work, and health on working collaboratively to support students withadditional needs in mainstream FE.

223Robinson, C (unpublished).224 Connexions Partnerships have a remit to arrange with the local Learning and Skills

Council and ES a review for young people with LDD (“Learning Difficulty and Disability”)in their 19th year, to agree arrangements for appropriate transition from the supportprovided by the Connexions Service, while ensuring continuity. Where a young person isnot ready to use the adult guidance services of the LSC or ES, Connexions Partnershipsshould continue to support that young person, with the overall aim of helping the client make use of the adult systems that have been set up to reduce dependency on the Connexions Service. These arrangements will not extend beyond an individual’s 25th birthday.


of multi-agency transition co-ordination and disseminateeffective practice throughexisting or developingmechanisms, such the Transition Information Network (TIN) or the proposed practicedevelopment toolkit.

• Medium term: DfES should, from 2005 onwards, encourageChildren’s Trusts that areplanning, commissioning anddelivering services to youngpeople over 16, to work withyoung disabled people forwhom the transfer toappropriate adult provision hasnot been completed, up to theage of 25.

• The development of models ofIndividual budgets, described inChapter 4, should, in principle,enable a more integratedresponse to the needs ofdisabled young people. Pilotsshould be developed to assessthe specific issues that will needto be overcome if individualisedbudgets are to be used to coverthe transition period, given the changes that occur at thistime in the sources and levels of funding.

Young people are often excludedfrom programmes that extend self-directed support to adults

There are fixed ages at which youngpeople are expected to transferfrom child to adult social careprovision and health care provision.

It is often not until they are eligiblefor adult services that they may beoffered opportunities to becomeinvolved in new programmesintroduced to extend self-directedcontrol. Young people will needparticular support to take part in such programmes – many will previously have had littleopportunity to direct the nature of their support services.

Young people’s health often declinesat transition, an issue noted in the Children’s NSF standard ontransition. This can stem from a loss of health services previouslyaccessed through school, and therebeing no single contact to which apaediatrician can hand over.Adolescence is also a time whenyoung people with complex healthcare needs may be less likely tocomply with treatment225. For thesereasons early access to programmessuch as the Expert PatientProgramme could be key.

What works in extending adultprogrammes to younger people

The Children’s NSF and the NSF forLong Term Conditions bothhighlight the need for flexibility inage of transfer, and that this shouldbe triggered by young people’s needrather than their age. The Children’sNSF also recommends that PrimaryCare Trusts ensure children andyoung people have the opportunityto become Expert Patients and toparticipate in an Expert PatientProgramme. Work is beginning onthis, but needs to be developed

225 Ahmad, W (2001) Disability, Ethnicity and Young People JRF: TPP; Morris (1999).

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further with particular attentiongiven to encouraging recruitment226.

The Integrated CommunityEquipment Services (ICES) initiativeshave had some success in improvingthe speed and efficiency with whicholder adults in England havereceived health and social careequipment227. ICES nationalguidance states that seamlessequipment services “have animportant role to play” in makingthe move to adult life a time ofopportunity for disabled youngpeople. While young people areincluded within the ICES remit intheory, this has not always been the case in practice.

Box 6.5: Case study of localpartnership working extendingICES to disabled young people

The London South Learning andSkills Council (LSC) has asked theSouth London LearningPartnership to provide a networkto facilitate agreement andestablish protocols between theLSC, Further Education colleges,adult community colleges and theICES in South London228.

In the longer term, the shift toIndividual Budgets and the key roleof local user-led advice, informationand advocacy services proposedwithin Chapter 4, will include young

people in developing control overtheir provision. This will includeretention of equipment across childto adult services where appropriate,and inclusion of young people – andtheir family and/or circle of supportwhere appropriate – in the planningof their self-directed support. DfES,with its lead on children’s services,will contribute to the developmentof this system.

Box 6.6: Case study of enablingyoung people to self direct their support

Youth PASS (the Youth PersonalAssistance Support Scheme) wasset up by the West of EnglandCentre for Inclusive Living (WECIL)to ‘promote independence,equality and inclusion through the provision of personalassistance to young disabledpeople’. It is based on the beliefthat young disabled people shouldhave the same rights as disabledadults to exercise choice andcontrol over their lives. Thescheme aims to support youngpeople in learning to make choices about how they areassisted and how to manage thatassistance in the way that bestmeets their additional needs229.


226 There are reports about the Children’s EPP Pilot that there has not yet been a coursedelivered to the under 18 group, due to difficulties with recruitment

227 Audit Commission Fully Equipped follow-up report.228 Davis, S (2004) ‘Integrating Community Equipment Services’ The Skill Journal, Isssue 79.229 Jade, R (2002) Creating Independence and Inclusion: Youth Personal Assistance Support

Scheme – Good Practice Guidelines WECIL and the NYA. Also see Cramp and Duffy(2003) Support Delivery Making in Practice Valuing People.


Recommendation 6.2:Adult programmes that extendself-directed control shouldinclude young people when theyare ready, not at a fixed age

• Short term: DH should collateand disseminate good practiceexamples to PCTs, by 2006, onincluding children and youngpeople in the Expert PatientProgramme, drawing on small-scale evaluation workcurrently underway.

• DH should work with the Audit Commission/Health Care Commission, by 2006, to investigate how ICESinitiatives can ensure that theyare including children andyoung people.

• Medium term: Each localauthority should make sure intheir strategic planning thatthere is support for youngpeople developing individualbudget plans and learning tomanage personal assistance anddirect payments. One modelwould be for this to bedelivered by the user-led advice,information and advocacyservice that Chapter 4,recommendation 4.3, proposesshould be available in eachauthority area.

Universal provision often fails tomeet disabled young people’s needs

As highlighted in other chapters,new mainstream programmes areoften piloted without theappropriate data being collected toenable assessment of how well theymeet the needs of disabled people.The proposed new duty on publicbodies to promote disability equalitywill require bodies covered by thespecific duty to gather evidencesufficient to inform their actionplans and Disability Equality Scheme.

There is currently a lack oflongitudinal and cost-benefitresearch that includes sufficientsample and/or appropriate topiccoverage to provide evidence ofwhat works in meeting the needs ofdisabled young people. Inspectionstend to focus either on children’sservices or on adult services230 ,and some inspection agencies lackthe appropriate skills or remit toevaluate the links between agenciesthat are crucial to how youngdisabled people experience thoseservices. It is also problematic to develop an outcome (rather than process) related performanceindicator for transition, due to the multiple inputs and the timedelay involved.

Various PSA targets have also failedas an incentive to focus on disabledyoung people. For example theemphasis on increasing theproportion of students achieving a level 2 qualification may leadschools and colleges to prioritise

230 Apart from the transition into adulthood inspection carried out in 1995 by the SocialServices Inspectorate.


those nearest to achieving level 2, tothe detriment of many of those withlearning difficulties or complexhealth needs. Likewise the target on the NEET group focuses on thoseaged 16–18, when many disabledyoung people only become NEET on leaving special school at age 19.

There is some evidence on whatworks in levering universal provisionto meet disabled people’s needs

DWP currently has a feasibility studyunderway examining howinformation can be gathered mosteffectively, and exploring whether it is viable to collect this sort ofinformation on children and youngpeople. This feasibility work includesconsidering the development of alongitudinal survey.

It is encouraging that the proposalsfor Joint Area Reviews of children’sservices have highlighted the needto ensure that provision aimed at disabled children and youngpeople are included. They are alsoconsidering the development of acase study approach to inspection,which could enable transitionoutcomes to be assessed. It will be essential that Joint Area Reviews include services providedfor relevant young people aged up to 25.

Future PSA targets need to focus onimproving the performance andparticipation of all young people,not just those closest to a particularlevel. Local PSA targets also provide

a vehicle for local development oftargets which promote moreinclusive practice.

Box 6.7: Case study of the use of a local PSA target

Lancashire County Council hasagreed a local PSA target toimprove youth participation andinvolvement for all young people,and highlighted within that theneed to increase access to leisureactivities among disabled 13-to-16-year-olds.

Recommendation 6.3: Assessments of how well‘universal’ services meet theneeds of disabled young peopleand their families

• All government departmentsshould ensure that theevaluation of new models of service delivery (such asExtended Schools and Children’sTrusts) address how well theymeet the needs of disabledchildren, young people and theirfamilies and that this evaluationis built into their DisabilityEquality Scheme.231

• The DRC should produce specificguidance on evidence gatheringin relation to the proposedpublic sector duty, whichaddresses the need for anincreased evidence base inrelation to young people.

231 E.g. ‘Beyond 2004 – A DCMS Framework for Action on Disability’ states that “all DCMSpolicies and projects to be assessed against the Disability Framework and the DDA.”


• DWP should ensure that any new approaches to collectinglong-term information ondisabled people gives somepriority to including a sufficientsample of children and youngpeople, to enable the impact of the changing quality andquantity of service contact attransition to be assessed. 2006/7and on-going.

• OFSTED, with other inspectorates,should ensure that Joint AreaReviews, from when they are firstimplemented, assess servicesprovided to disabled youngpeople up to the age of 25. The Healthcare Commissionshould conduct regular thematicinspections focusing on disabilityand transition.

• DfES should identify options by2006 for the development oftransition performanceindicators that local authoritiesand agencies can use to audittheir own transitionarrangements. The productionof these indicators will includeDH and DCMS.

• DfES should assess theeffectiveness of PSA targets on level 2 and NEET rates inimproving overall performance,including the performance ofdisabled young people.

6.3 Family support that bridges transitionOverarching vision for deliveringsupport to families:

by 2015, everyone with parentalresponsibility for a disabled youngperson will have access to the rightsupport to enable them to cope, toenjoy being a parent, and toparticipate in the labour market ifthey choose. This need will be metin a way that empowers bothparents and young people, andwhich treats disabled young peopleas having the same aspirations asother young people: to havechoices, friends, and an appropriateleisure and social life.

Families with disabled childrenoften lose support as their childbecomes an adult

Families with a disabled youngperson have high levels of unmet need.

A survey of parents of disabledchildren found the highest levels of unmet need among those whose children were older233. The impact of unsuitable housing,for example, increases with age234. In a comparison of six EU countries,families with a disabled youngperson in the UK were found to be the least satisfied with thepractical and financial support they received235.

232 It is difficult to develop outcome measures by which to assess transition arrangements,due to complexity of inputs and the time delay before outcomes, which is whyinspection tools do not currently cover this. Rowland-Crosby, N (unpublished) Transition– A Checklist (England) provides a useful process based list of measures.

233 Beresford B (1995) Expert Opinions: A National Survey of Parents Caring for a SeverelyDisabled Child. Policy Press, Bristol

234 Due to lifting the young person if they have mobility needs and need for more space.See discussion in Chapter 4 on DFG.

235 Russell (2004 – forthcoming)

139

Disabled young people tend toremain in the familial home longerinto their adult life than their non-disabled peers236, a pattern that islikely to increase with the welcomeshift towards community care237.Parents often continue to be aprimary carer long after their ‘child’has turned 19, and beyondentitlement to parental leave238.

There are additional barriers forfamilies from Black and MinorityEthnic (BME) groups, as some serviceproviders assume that they willprovide more assistance than whitefamilies. One study found 70% ofSouth Asian family carers of childrenand adolescents with intellectualdisabilities scored above a thresholdfor psychological distress, comparedwith 47% of family carers overall239.

There is a lack of accessible leisure opportunities

Parents need a break from theirchildren sometimes, and childrenneed a break from their parents. For most young people this isachieved through a range of socialand leisure activities, such as‘hanging out’ with friends,

travelling, youth clubs, and trips to the cinema, a leisure centre orthe pub. Currently these options areoften inaccessible to those with themost significant impairments,contributing to their becomingsocially excluded, their familiesbeing unable to cope, andincreasing the likelihood of theirmoving unnecessarily into costlyresidential provision, often far fromtheir family and local community.While the extension of DirectPayments to carers and to 16-and17-year-olds and the new availabilityof vouchers for ‘short term breaks’are welcome240, their impact can belimited by the lack of appropriateleisure provision available for purchase.

The overall take-up of ‘short breaks’by families from BME groups has not been improving. There issignificant unmet need and adisproportionate number of familiesusing institutional rather thanfamily-based provision comparedwith white families. This is despitehome-based services – such as sittingand befriending – being popularwith BME families241.


236 Hendey and Pascall (2002) Disability and Transition to Adulthood: AchievingIndependent Living, JRF:York.

237 An estimated 60% of adults with a learning disability continue to live in the familyhome, with a further 20% heavily dependent of families for support in supportedaccommodation. (Russell, 2004). Not preparing disabled young people for independentliving can lead to the situation of elderly carers.

238 The DTI’s extended parental leave entitlement for parents of children entitled to DLA upto the age of 18 (The Maternity and Parental Leave (Amendment) Regulations 2001).

239 Emerson, E et al (2004) ‘Levels of psychological distress experienced by family carers ofchildren and adolescents with intellectual disabilities in an urban conurbation.’ Journalof Applied Research in Intellectual Disabilities 17(1), June, 77-84.

240 Introduced under the Carers and Disabled Children Act (2000). 241 Flynn, Ronny (2002), Short breaks: Providing better access and more choice for Black

disabled children and their parents, The Policy Press/JRF.


Families with disabled children are more likely than other familiesto approach the transition process from a position of poverty and disadvantage242

The costs of raising a disabled childare estimated to be three timesgreater than those for raising a non-disabled child, and the costsincrease as young people getolder243. Many parents have to giveup work as their child becomes anadult, due to the ‘cliff edge’ insupport and services that theyencounter244. Families are alsoaffected by the loss of contributionto household income from disabilitybenefits if young disabled peopleleave home or take up employment,this can be a barrier to parentssupporting young people to become more independent245.

There is some evidence of whatworks in providing family supportthat bridges transition

The Child Poverty Review states thatthe Government will ensure “betterfamily support services which areresponsive to [families’] needs”. The Review also highlights theimportance of good quality optionsthat enable parent-carers to

participate in paid employment246.These options must include familieswith older disabled young people.Local authorities should have regardto the Carers (Services andRepresentation) Act and Carers(Equal Opportunities) Act,recognising that the needs of familycarers may also change at transition.Family carers should not have togive up paid employment or lose all family support services, justbecause their child is moving toadult provision.

Recommendations throughout this report will contribute to theprovision of accessible mainstreamleisure provision that empowersboth parents and young people by providing age appropriateness,flexibility and choice. The ExtendedSchools Programme should also be key to the delivery ofinclusive leisure options for olderyoung people.

Financial constraints have beendemonstrated to be a major barrier.The Family Fund has been evaluatedas providing a cost-effective grantgiving process that can make asignificant impact to families

242 Council for Disabled Children (2003) Disabled Children, Their Families and Child Poverty:Briefing Paper End Child Poverty: London. They are also more likely to be single parenthouseholds due to the increased rate of relationship breakdown between parents ofdisabled children (Shapiro, A (2004) No time for us: relationships between parents whohave a disabled child, Contact a Family: London).

243 Strategy Unit consultation with parents of disabled young people. And Gordon, D. et al,(2000) Disabled Children in Britain: A Reanalysis of the OPCS Disability Surveys. TSO.

244 84% of mothers with disabled children are out of work compared with 39% of motherswithout disabled children. DWP (2002) General Household Survey, TSO.

245 Council for Disabled Children (2003) Disabled Children, Their Families and Child Poverty:Briefing Paper End Child Poverty: London.

246 HMT (2004) Child Poverty Review TSO.

141

with a severely disabled child247.However it only supports familieswith a disabled child up to the ageof 16, and where the family incomedoes not exceed £23,000 –irrespective of where they live in the country.

Recommendation 6.4: Family support that bridgestransition

• Short term: DfES should reviewwith the Family Fund, by 2006,how its remit could be extendedto include families with 16-and17-year-olds, and disabled youngadults moving into independentliving (including disabled careleavers), and whether theuniform income thresholdshould be raised.

• Medium to long term, theestablishment of individualisedbudgets, as described inRecommendation 6.1, shouldreduce the need forsupplementary grants andinclude continuing support forboth young people and theirfamilies across transition.

6.4 PersonalisationOverarching vision for deliveringpersonalisation and empowerment:by 2015, all young disabled peoplewill have the opportunity to be fullyinvolved in the personalisedplanning of their future activitiesand provision. This includes gettingthe right support (includingadvocacy) at school, from child and adult health and social services(where appropriate), from aninformed personal adviser, and from all other relevant agencies andindividuals.

Disabled young people and theirfamilies have poor access toadvocacy and information

Disabled young people and parentsof disabled young people told theStrategy Unit that littleinformation248 about transitionprocesses or options had been madeavailable to them. Although thereare good national sources ofinformation they particularlywanted to find out what they wereentitled to, who to contact, andwhat the options were locally. This can be particularly relevant toyoung people attending specialistresidential provision in another area,and who are vulnerable to losingcontact with services in their homeauthority. The fact that there isvariable access to advocacycompounded this gap.


247 Beresford BA. (1993) ‘Easing the strain: assessing the impact of a Family Fund grant onmothers caring for a severely disabled child.’ Child: Care, Health, Development, 19: 369-378; Hirst, M (1997) ‘Variations in take-up of the Family Fund’ Child: Care, Health andDevelopment, 23, issue 2, pp. 157-171(15); Family Fund (2003) Annual review: A celebration of 30 years helping families.

248 Such as the Transition Information Network magazine, seminars and website(www.myfuturechoices.org.uk) and the multi-media Trans-active programme for youngpeople with learning disabilities, run by Mencap (www.trans-active.org.uk).


249 http://www.nolimits.org.uk/250 Bignall, T., Butt, J and Pagarani, D. (2002), Something to do: The development of

peer support groups for young black and minority ethnic disabled people, The Policy Press/JRF.

251 Clarke, G (unpublished) Mentoring Project final report: South Gloucestershire 1997-99

The focus on expanding disabledyoung people’s participation inmainstream education, leisure,and social activities is welcome. But mainstream schools can lack the contacts and information thatspecial schools have access to and a mainstream context can lead tosome experiencing isolation fromother disabled people.

What works in the provision ofeffective advocacy and information

The lack of information received byparents when their disabled child isfirst diagnosed is being addressedthrough the distribution of an EarlySupport Family Pack and EarlyServices Plan. Parents and youngpeople consulted by the StrategyUnit keenly felt that such a pack –with its combination of accessiblelocal and national information, andspecified accountabilities – wouldalso benefit those approachingtransition to adulthood.

Box 6.8: Case study of provisionof local transition information

Young disabled people in Suffolkhave worked with child socialservices and Connexions todevelop a transition resource tohelp other young people and theirfamilies. The DVD, called NoLimits, includes detailed localinformation and will bedistributed to all Year 8 pupilswith additional needs in the

Authority. DVD stations are placed in Connexions offices, schools,other public places and areavailable on loan. The DVD will be updated annually and includes signing and otheraccessibility features249.

There are various local learningmentoring schemes around thecountry, and many provide morethan support for learning,encouraging wider social inclusionand participation. However, aparticularly good source ofknowledge for disabled youngpeople can be others with personalexperience of encountering andovercoming disabling barriers. This can have added significance for young people from BME groups, who are more likely toexperience isolation from otherswith similar experiences250.

Box 6.9: Case study of mentoringprovided by disabled people

The mentoring project run atWECIL was a scheme aimed atempowering young disabledpeople by giving them one-to-oneaccess to individual mentors who are disabled adults. The mentoring project has proved to be a small butsignificant model of innovativeand progressive practice251.


Access to local user-led advice,information and advocacy services is discussed in Chapter 4. These services will also ensure thatyoung people and their supportershave full access to the advice,information and advocacy they needto move towards independentliving. The proposed new duty onpublic bodies to promote disabilityequality will also require increasedinvolvement of disabled people.

Recommendation 6.5: Young people and their familiesshould have access to goodquality local information

DfES should, by 2008, work up andassess ways of providing local andnational information abouttransition to disabled youngpeople and their families, drawingclosely on the experience of theEarly Support Pilot Programme’sFamily Pack. The results of thiswork should be disseminated by2008, through a range of avenues,for example, schools, Connexions,Independent Living Centres, and Parent Partnership Services.DH and DWP to contribute.

Disabled young people are not fullyinvolved in the planning of theirown provision and options

Planning for adulthood is notcurrently working well, and whilethere are examples of excellent localpractice, there is also great

variation. Many young people,especially those with the mostsignificant impairments, have littleopportunity to develop a sense of aspiration or direction for thefuture, and analysis of survey datashows that disabled young peopleare much less likely than their non-disabled peers to feel that they havecontrol over their lives252. Many stayon at the school they previouslyattended because that waspresented as the “easiest option253”.

Consultation with young people has found that where planning had taken place, many felt that theywere not listened to or that theirown preferences did not shape theoptions made available to them254.They also emphasised thatmaintaining friendships and aleisure life were issues of primaryimportance to them, but were notalways regarded as important byothers involved in planning. Under the Disability DiscriminationBill there will be a specific duty to involve disabled people.

What works in delivering personcentred planning

Person-centred planning wasdeveloped through the ValuingPeople strategy to enable greatercontrol over their support. AlthoughTransition Champions and othershave promoted its use with youngerpeople, it was developed for usewith adults with learning disabilities.

252 Burchardt, T. (unpublished paper, work in progress).253 Long, S. et al (2004) What can I do when I leave school? A Review of Provision

in Norfolk for Learners with Disabilities and Learning Difficulties. Learning and SkillsCouncil Norfolk.

254 Strategy Unit consultation with disabled young people in contact with services.


The evidence is still being gatheredon what models work best forpeople with other complex needs and with children and young people255.

Box 6.10: Case study of the use of person-centred approaches inplanning for transition

Trans-active is a project in whichyoung people with and withoutsevere learning disabilities worktogether, using multimedia toexplore and communicate choicesthey will have when they leaveschool. The project has beenlaunched nationally afterdevelopment in 13 schools inBirmingham, Lichfield, andLancaster. Over the year ofparticipating in the programme,young people with learningdisabilities develop a web-based‘passport’, which they can use toshow people what is important tothem now and in the future256.

Those with the highest level ofsupport need, especially where thisincludes communicationimpairments, need a considerableamount of time and specialistsupport in order to be able toengage fully in person-centredplanning for their transition. This can be delivered well throughmulti-agency funding of specialistintensive transition workers,

which can also lead to increasedefficiencies when run at a regional level257.

Box 6.11: Case study ofsub-contracting the most specialist support

In Kingston, adult social care,children’s services and Connexionsall co-fund a team of transitionworkers to work closely withyoung people approachingtransition and their families. This includes supporting theyoung people to develop person-centred plans based closelyon their own areas of interest, andthe families and young people toinvite speakers and run seminarson transition issues they areinterested in258.

Recommendation 6.6: Disabledyoung people should be includedin planning that is centred ontheir own needs

• Short term: Within existingbudgets, DfES should lead ondisseminating good practicemodels for jointly-fundedsubcontracting of the mostspecialist transition supportprovision, from 2006 onwards.This should use existing orforthcoming vehicles, such asthe Transition InformationNetwork (TIN) or the practicedevelopment toolkit.

255 Valuing People are undertaking a large-scale evaluation of PCP, including five transitionpilots, however other transition models are also being rolled out, such as Trans-active.

256 http://www.trans-active.org.uk/index.htm 257 E.g. the Greater Manchester Coalition on Autism Services.258 Foundation for People with Learning Diabilities.

145

• DfES and DH should work up and assess a proposal to mapyouth centred approaches totransition planning, undertakepilots (involving, as appropriate,Children’s Trusts, Connexionsand/or Child and Adult socialservices) of different models toevaluate their suitability withdifferent groups, and to informthe development of IndividualLearning Plans that fit withexisting assessment pathways.2007 onwards.

• Long term: This should inform the promotion of person-centred planningpractice nationally by 2010,informing how young peopleare involved in transitionplanning and the self-directionof their own support.

The Connexions service can provideeffective support for disabled young people

The Connexions service national roll-out was completed in April2003. Prior to this national roll-out,one in four young people withlearning difficulties had beenleaving compulsory education withno transition plan in place – despitethe requirement for young peoplewith statements of SEN to have sucha plan under the Education (SpecialEducational Needs) (England)(Consolidation) Regulations 2001259.

Connexions has a number of keyroles in relation to young disabledpeople, including:

• an overarching objective to reducethe number of young people whoare not in education, employmentor training (NEET);

• a requirement to coordinate the transition provision of youngpeople with a statement of special needs from the age of 13 up to 25;

• to ensure young people with LDDreceive assessments of educationaland training needs in line withSection 140 of the Learning andSkills Act 2000; and

• to provide local LSCs withinformation to enable them toplan for and meet the educationaland training needs of youngpeople with ‘Learning Difficultiesand Disability’ (LDD).

Evidence shows that despite beingnew, Connexions has engagedpositively with disabled youngpeople, with high levels ofsatisfaction (92%)260 with the service they receive – the same asthat of non-disabled young people.Whilst other evidence shows thatyoung people, their carers andpartner agencies identified threekey qualities in their ConnexionsPersonal Advisors: expertise and information giving; support in speaking up/advocacy; and independence.


259Heslop (2002).260 BMRB Social Research (2004) “Improve your Connexions: the Connexions Service

customer satisfaction survey”.


The National Audit Office (NAO) hasalso reported that the Connexionsservice is on course to achieve itstarget for the reduction in thenumber of young people who areNEET. And because of the oftenmultiple barriers disabled youngpeople face, the Connexions servicehas to support them if it is tosuccessfully deliver its NEET target.

Nevertheless, more could be done.The NAO has noted that “There isstill a risk that not all young peoplewho would benefit from advice arereceiving it. This gap is due toConnexions operating with fewerresources than was originallyanticipated, together with a lack ofclarity regarding the respective roleof schools and the Connexionsservice in providing careers advice toyoung people. Closing this gapwould help ensure that youngpeople make the most of theiropportunities261.” These issues arelikely to be particularly important in determining the success ofConnexions as a service to disabledyoung people. Working withdisabled young people typicallyrequires more time and additionalexpertise, compared with what isrequired for other young people.Some disabled young people, whoare less “work ready”, may requiresignificant levels of support to enteremployment or continue learning.

Also, in focusing efforts on the 16 to 18 year old NEET, it will beimportant to ensure that the target

delivers action which benefits thefull range of disabled young peoplewho may otherwise be NEET. Inparticular, it is important to considerthat some disabled young people donot leave special school or collegeuntil they are 19 or 20, meaningthat they are at risk of becomingNEET at a slightly older age than the16–18 year old group on whichattention may otherwise be focused.

Research has shown that whereConnexions Personal Advisers havethe time and the training to developproperly a relationship with,independently advocate for, andcontinue to support disabled youngpeople beyond age 19, youngpeople value this highly and theexperience of transition is improved.But often this relatively new‘transition co-ordination agency’ haslacked the financial and skills-basedresources to perform this role262.

Box 6.12: Case studies ofConnexions’ work with disabledyoung people

Connexions South Central sub-contracts a specialist transitionworker from Hampshire DeafAssociation to work with studentsin particular schools and toprovide advice to other Personal Advisors.

In Somerset, four Connexionsworkers are based in adultlearning disability teams and this has led to much better

261 National Audit Office (2004) Connexions Service: Advice and Guidance for all youngpeople report by the comptroller and Auditor General HC 484 Session 2003-2004.

262 Rowland-Crosby, N. (2004).


information sharing and strategic planning, leading to improvedcommissioning of services to meetthe needs of young people withhigh support needs263.

Recommendation 6.7: Ensuring advice and guidance is tailored to meet the needs ofdisabled young people

From 2005, DfES should ensure, as part of the Youth Offer to bedeveloped as a result of theforthcoming Youth Green Paper,that arrangements for providingadvice and guidance to youngpeople, including Connexions,meet the needs of all disabledyoung people.

6.5 Opportunities through on-going inclusionOverarching vision for opportunitiesthrough on-going inclusion:by 2015, all disabled young adultswill have the expectation andavailability of a breadth of valid andvalued opportunities available tothem, irrespective of the complexityof their needs. This includessupporting inclusion withinmainstream education, employmentand training, and enabling personaldevelopment, active citizenship, andcommunity involvementopportunities for all.

The situation for disabled studentsin higher education (HE) was

described in the Interim AnalyticalReport from this project, and is notrepeated here. While the numbersare still low, there has been asustained increase in the proportionof disabled people participating,alongside a large increase in thenumber of students receivingDisabled Students Allowance (DSAs).The introduction of early needsassessment for the DSA has helpedto smooth this transition.Participation in HE has been found to play a key role in reducing the gap in occupationoutcomes between disabled andnon-disabled people264.

Disabled young people’s needs areoften not met by current furthereducation provision

Alongside the welcomemodernisation of daycentres therehas been a radical shift in the role ofthe further education sector. Moreyoung people with learningdisabilities are attending college,but there has not been a strategy inplace to ensure that the nature andcapacity of this provision is meetingstudents’ needs. Further education(FE) colleges have been described asat risk of becoming ‘the newdaycentres’ due to segregatedprovision, a narrow curriculumfocused on basic numeracy andliteracy, a lack of clarity on a rangeof pre-level 1 core skills, andstudents continuing to undertake a‘revolving door’ of repeated courseswithout a sense of progression,

263 Robinson, C (unpublished) Good practice examples in transitions from the South West.264 Groucher K (2004) ‘What Happens Next? A report on the first destinations of 2002

graduates with disabilities’ The Skill Journal, Issue 79.


despite their goals and abilities265.Another barrier to greater inclusionis the emphasis in governmenttargets on achievement of a level 2qualification as the minimumrequired to participate in a moderneconomy and fixed ways ofmeasuring educational success266.There is also an assumption thatachievement at FE occurs by age 19,while two-thirds of disabled FEstudents are age 20 or over267. The production of a DisabilityEquality Scheme, if required underthe Public Sector Duty, would beone way to challenge FE institutionsto address the equality of provisionoffered to disabled students.

The increased role for the FE sectorhas led to various agenciesdeveloping new workforcequalifications in SEN provision. This duplication and fragmentationcould be avoided if a single andwider strategy was developed.

There is some evidence of whatworks in delivering inclusive further education

The Learning and Skills Council(LSC), with newly defined

responsibility for disabled learnersaged 16 or over in school andfurther education, is undertaking anational review of the planning andfunding of provision for ‘learnerswith learning difficulties anddisabilities’ across the post-16sector268. Every local LSC is leadingon a Strategic Area Review (StAR) ofprovision in their region, supportedby LEAs and other key stakeholders,including employers. Some local LSCshave addressed the needs ofdisabled learners269. It is importanthowever that the national LSC cantake a strategic lead on theprovision needed for this group oflearners (including in terms ofworkforce skills) and how it mightbe planned and funded within theLSC’s statutory duties.

Box 6.13: Young people withlearning disabilities identified arange of outcomes they wantedto achieve through studying,including to:

• gain qualifications and beemployable;

• gain independence, advocacyand self-assertiveness;

265 Long et al. (2004) and Lockton, P (2003) Mapping the provision of learning for learnerswith learning disabilities in Nottingham and Nottinghamshire, LSC: Nottingham.

266 A survey conducted in 1995 estimated that nearly half of disabled students in FE (mostlythose with LDD) are following a pre-level 1 course. IES (1997) Mapping Provision: TheProvision of and Participation in Further Education by students with Learning Difficultiesand/or Disabilities. FEFC: Coventry

267 Half of disabled students in FE are aged 25 or more, so the focus on the 16-18 banddoes not meet the needs of the majority of disabled FE students. (IES (1997)). A higherproportion of disabled FE students record their ethnic origin as ‘white’ than for thestudent population as a whole. IES (1997).

268 The Scottish Further Education Funding Council has recently undertaken a similar reviewof funding and administration of SEN provision in Scotland.

269 E.g. Long et al. (Norfolk) and Atkinson E (forthcoming) Improving ChoicesEastern Region.


270 Long (2004).271 Burchardt (unpublished paper, work in progress) – figures exclude those with an

intellectual impairment.

• develop an understanding of computers and IT;

• develop practical work skills;

• learn basic and daily living skills; and

• learn about themselves andrelationships270.

The above suggests a need forindividually-tailored programmes that balance ‘basic’ numeracy and literacy skills with a greateremphasis on skills of decision-making,advocacy and empowerment. This needs to cover both vocationallearning and learning as an end initself (music, art, drama) and combineboth classroom and practical or work-based experience (discussed in thenext section).

The final report of the TomlinsonGroup on 14 to 19 year EducationalReform contains proposals designedto meet the needs of all learners,including a ‘customised’ pre-foundation level diploma designedto be personalised to the individualand to measure distance travelled. If adopted, this could meet some of the present concerns aboutaddressing SEN and disability issuesin the FE sector. However it willneed to avoid becoming anadditional transition plan fordisabled young people.

Box 6.14: Case study of accessible and inclusive FE provision

The new E2E course inNottinghamshire is aimed atyoung people with a variety ofneeds and abilities and links withprogression into employment,work-based training or furthereducation. Through consultationand person-centred planning along-term action plan is agreedand shapes the individual’scurriculum, in addition to a corecurriculum that includes:citizenship, action planning, rights and responsibilities, andaccessing/using information.

Disabled young people oftenstruggle with the transition fromeducation to work

As discussed in Chapter 7 and theEmployers Working Group report,for a large proportion of disabledpeople, access to skills andemployment is poor. At the age of26, disabled people without learningdifficulties are more likely than non-disabled people to have noqualifications, to feel that they havenot acquired useful skills, not ineducation, employment or training,and if they are in employment, to bein unskilled work271.

Progress from vocational courses toemployment is problematic,especially for young people withlearning disabilities. A recent review

could find few examples of transitionto work provision, and fundingsources for these were fragmentedand fragile. Education and trainingcourses are often too general andinsufficiently focused on the maintransition to employment aims of theindividual272. Programmes aimed athelping young people enter thelabour market – such as newApprenticeships273 and the New Dealfor Young People274 – make littleprovision for disabled young people’sadditional needs. Other employmentinitiatives, like Pathways to Work,Access to Work, and the New Dealfor Disabled People, focus more onreturn to work and retention thanon entering the labour market forthe first time.

The introduction of new legislation,around child protection and healthand safety, may further hinderdisabled young people’s access towork experience and volunteeringby promoting a risk-averse cultureamongst employers. In addition,work experience and volunteeringare not fully covered by the DDA orby Access to Work.

Box 6.15: Case study of thebarriers to accessing workexperience

Philip found himself a workexperience placement in a mediacompany in a nearby city doing

work he is extremely interested in. However because his mainstreamschool lacked the funds to conducta full risk assessment of thepremises, to insure him, or tocontribute towards his transportcosts, he was unable to attend275.

There is some evidence of whatworks in making the transition to employment

Key factors identified for asuccessful transition to workprovision, particularly for youngpeople with learning disabilities,include:

• recognising that employment is arealistic option;

• developing training packages tosupport the individual;

• identifying employment goalsearly on; and

• providing flexible and supportedwork experience placements, withon-going support for theindividual and employer.

These can be developed throughimproved links between college and employers. Employers are often very supportive, and inconsultations with the Strategy Unit have highlighted the need for more information and goodpractice examples.


272 Jacobsen, Y (2002) Making the Jump: Transition to work, a guide to supporting adults with learning difficulties make the jump from education to employment.NIACE: Leicester.

273 The SU welcomes the extension of Apprenticeships to those aged 14 to 15 and over 25.274 The New Deal for Young People, launched in 1998, seeks to improve the long-term

employability of 18 to 24 year olds who have been unemployed for six months or more.275 Strategy Unit consultation with disabled young people.

Box 6.16: Case study of joint working between furthereducation and supportedemployment services

Mencap Pathway EmploymentService was setup in 1998 to assistpeople with learning disabilitiesinto employment. Its office issituated in the Harrow Collegebuilding, and Harrow College partfunds the service. Individuals aresupported through training forwork, liaison with employers,organising and supporting workexperience placements, providingjob club facilities, support atinterview and on-the-job, andbenefits advice.

The Tomlinson Group’s proposals for14- 19 educational reform includeintegrating vocational pathways,Apprenticeships, and work-basedtraining into the common Diploma.If adopted, this new system has thepotential to work well for disabledyoung people, but it will be crucialthat any new arrangements arethoroughly disability-proofed tomake sure that they do.

Recommendation 6.8: Disabled young people to havefull access to individualisedlearning and vocational pathwaysinto chosen employment andother meaningful occupationopportunities

• Short term: DfES and LSC, from 2006 onwards, should ensure in response to the Tomlinsongroup’s recommendations for 14 to19 educational reform that any new arrangementsaddress the needs of disabledyoung people277.

• Good practice examples shouldbe issued to employers andACAS on implications of newHealth and Safety legislationand child protection regulation,in particular with respect toprovision of work based trainingand experience. DfES to leadfrom 2006 onwards.

• DfES and LSC should make surethat the Lifelong Learning UKsector skills council beingestablished to representemployers in the post-16 sectorhas a remit to developappropriate career structuresand skills developmentopportunities for all staffworking with young peoplewith SEN. 2006 onwards.

Many disabled young peoplecontinue to move into segregatedadult lives

Disabled young people with themost severe impairments continueto be offered inappropriatesegregated adult services (or in somecases be offered no support at allbecause they are seen as ‘too


276Jacobsen (2002).277Including the role of Shaw Trust, Papworth Trust, Trident, regionally commissioned

Education Business Alliances/Links, youth-focused social firms, links between FE andemployers through work coaches and supported employment, flexibly designed workexperience options, and the role of E2E.


278 Pownceby et al (1997) The Coming of Age Project: A study of the transition frompaediatric to adult care and treatment adherence amongst young people with cysticfibrosis. Bromley, Kent: Cystic Fibrosis Trust.

279 Projects are underway extending CAMHS services at transition (NSF for mental health).280 Maudslay, L (2003) ‘Aasha Project: transition to adulthood for young people with

learning difficulties from a south Asian background’ Skill Journal Issue 77.281 The Consultation Fund makes grants available to voluntary and community sector

organisations to run consultation activities for children and young people in England upto and including age 19. Disabled young people have been identified as a key group.Changemakers, a national charity which promotes young person led action and learning,is managing the annual fund of £500,000 on behalf of the DfES.

282 http://www.kidsactive.org.uk/

disabled’ for local provision). At a systemic level, incentives need to be created for movingresources from day services andrepeat ‘special’ college courses into mainstream leisure, cultural,sport and social opportunities, underthe disabled person’s control. This can be hindered by the lack of research exploring meaningfullife options for those with the mostsignificant impairments, for whomfull-time employment may not be a realistic option.

Disabled young people may needlonger to progress through coursesand get to different aspects oftransition. However most transitionservices tend to be available atschool leaving age, which often doesnot coincide with the right time forother aspects of transition278.Mental health needs are oftenassociated with having otherimpairments – but disabled youngpeople’s access to such services isoften very poor279, 280.

The same issues that non-disabledyoung people have to deal with –learning about sex, relationships,bullying, and drug and alcoholusage – are also relevant to disabled

young people, with all types ofimpairment. The move to involveyoung people in wider consultationson a range of public issues has notalways addressed including youngpeople with impairments281.

Box 6.17: Case study ofdevelopment of inclusive leisure provision

Kidsactive run a Play and YouthDevelopment Project, funded byWandsworth Council, to promoteinclusive play and leisureopportunities for disabled childrenand young people up to the ageof 21. It works with disabledyoung people to find out whatthey want and encourages leisureproviders to make their servicesaccessible to all young people. Theproject provides information oninclusion and disability issues toparents, carers, young people andprofessionals; assists with movingdisabled young people into non-specialised provision; and runsdisability awareness training toenable mainstream leisurefacilities to ensure their servicesare accessible to all282.


Recommendation 6.9: Access to leisure and independentliving needs to be ensured

• Short term: The Code of Practiceproduced by DRC outlining theduty on the public sector topromote disability equalityshould include local authoritiesproactively working with arange of stakeholders, includingthe leisure industry, to increaseopportunities for participationfor disabled people within their area. DWP to lead, from2005 onwards.

• From 2005 onwards, DH tocommission research on therange of meaningful adult lifeoptions for young people withthe highest levels of need(within existing researchbudget), and use this to inform the menu of optionsexplored through CommunityAccess Assessments.

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Summary

Recent Government policy has delivered some significant improvements in the employment prospects of disabled people – but further action is needed to support disabled people in the labour market.

Recommendations to support independent living will play a key role in supporting disabled people to get and keep jobs. But there is a strongcase for more focused action, so that any disabled person who wants a job, and needs support to get a job, should be able to do so wherever feasible. Employers should also be supported in employingdisabled people.

To achieve these goals, this report highlights five areas of intervention:

• providing effective early support and guidance to those who need it toovercome barriers to work;

• improving the skills and access to in-work support needed to enhancedisabled people’s employability;

• connecting disabled people with work by making transition toemployment less risky and complicated;

• engaging employers to improve their attitudes towards disabled people and their understanding of what it means to employ a disabled person; and

• building information networks to bring together and disseminateimportant information to disabled people, their employers, family,friends and carers.

Services should be personalised with a strong focus on delivering support tailored around individual needs. Specialist case managers would need to take responsibility for guiding and assisting disabledpeople through all stages of support and all the way to open employment where this is appropriate.

Chaper 7: Employment


The chapter sets out the currentsituation for disabled people andthe labour market in Section 7.1.The next section (7.2) discusses the importance of effective early support, includingrehabilitation. Section 7.3 sets outrecommendations to improve theemployability of disabled people.Section 7.4 addresses connectingdisabled people with work and work support. The role of employersis discussed in Section 7.5. The lastsection (7.6) highlights theimportance of building information networks.

The focus of this chapter is ondisabled people who are out ofwork. As Chapter 2 has noted, this is not necessarily the same group ofpeople as those claiming incapacity-related benefits. However, there is a significant overlap, and manydisabled people can be mosteffectively supported throughinterventions targeted throughelements of the benefits system283.

7.1 What is the currentsituationDisabled people are doing less wellthan non-disabled people in thelabour market

Before 1997, there was littleincentive or assistance for people tomove off benefits and into work;nor was there much incentive orassistance for employers to employdisabled people.

A number of changes have beenmade since 1997, including thestrengthening of the DisabilityDiscrimination Act, the New Deal forDisabled People, and the NationalMinimum Wage. Improved childcareprovision and flexible working hourshave also helped disabled parents tomove into and stay in work. These changes have improvedincentives and assistance for peopleto move off benefits and into work,and have placed additionalrequirements on employers toemploy disabled people. However,more work is still needed to improvethe labour market status of disabledpeople. The scale of the challenge toimprove the employment chances ofdisabled people is still significant.

Most recently, DWP has introducedthe Pathways to Work pilots, whichare re-focusing the framework ofsupport for people on incapacitybenefits to help more people getback to work. This approach istesting out many of the keyprinciples identified in this chapter,and early results suggest they areproving very effective.

Box 7.1: The Pathways to Work pilots

Pathways to Work pilots are theGovernment’s most concertedeffort to encourage and assistthose people on Incapacity Benefit(IB) to return to work, and workwith key stakeholders to promotethe value of job retention.

283 Previous chapters have also addressed issues around the support that parents of disabledchildren need. Some of the recommendations of Chapters 4 and 5 will help parents ofdisabled people into work by offering the right support, such as childcare.

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Existing claimants can also take part on a voluntary basis. The aimis to enable people to overcomeobstacles to work, by focusing ontheir capabilities and therebychallenging the belief that peoplewith health conditions areincapable of work.

The Pathways to Work pilots arerunning successfully in seven areasof England, Scotland and Wales,covering 9% of new claims to IB.The key features are:

• more skilled advice and help toreturn to work provided byspecialist IB Personal Advisors;

• direct access for customers toexisting programmes and thenewly introduced conditionmanagement programmesoffered jointly by Jobcentre Plus and the local NHS;

• improved financial incentives tomove into employment, such asthe Return to Work Credit;

• more support for those movingfrom IB to Job SeekersAllowance – includingmandatory early access tomainstream New Deals; and

• active engagement ofstakeholders, including GPs andemployers, in the merits ofgetting people back to work.

Budget 2004 announced thatpeople who have been claiming IBin the two years before the pilots

will be brought into the WFI regime from 2005 in Pathways to Work areas. These interventionswill be included in the evaluations.These include a Job PreparationPremium of £20 for thoseundertaking relevant activity thatsupports return to work.

In addition, the Pre-Budget Report (PBR) announced thatPathways to Work pilots will beextended, starting from October2005, to cover around one third of the country.

The intention is to evaluate thesepilots. Early evidence from thefirst phase pilots shows some veryencouraging early results in termsof increased off-flows frombenefits, higher levels of jobentries and significantly increasedparticipation levels in back towork activity.

The report endorses the currentDWP initiatives within the Pathwaysto Work pilots. It welcomes the PBR announcement and supports it. It proposes for DWP to roll outPathways to Work nationwide,subject to evaluation results fromthe current pilots and subject to theavailability of appropriate resources.

Some of the recommendations inthis report are focused on issues not within the scope of thePathways to Work pilots. Theserecommendations should be takenforward alongside progress with

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Pathways. Other recommendationspropose variations or additions toelements already within the pilots.These recommendations should betaken forward as part of the roll-outof Pathways.

7.2 Effective early supportLong-term and permanentincapacity is not inevitable. This section focuses on those people who become disabled as adults.Early intervention can providesupport and information to theindividual to manage their conditionand remain employed.Rehabilitation is an importantcomponent of the overall packageof support. And an effectivegateway onto incapacity benefits –based on a rigorous fair, prompt andefficient assessment process – can beused as a tool to identify the rightsupport needed.

Rehabilitation is an importantcomponent of the overall packageof support that enables disabledpeople to overcome barriers to work

There is widespread acknowledgmentthat considerably more people couldbe retained in and helped back intowork. There are several reasons whyso many people do not receive theright help at the right time.

• Despite the high costs toemployers of sickness absence – anestimated £11 billion per year –many employers do not take stepsactively to monitor or deal withsickness absence. The largest

employers are increasinglyrecognising the high costs, andthat they can do something aboutthese through better managementand attention. But many employerscontinue to regard the individual’shealth and relationship with theGP as private and nothing todo with them.

• GPs have little time to payattention to work and contextualissues, and may feel obliged tosign-off patients without helpingwith return to work plans. Some may even still see work as part of the problem rather than the solution. Few GPs receive adequate occupationalhealth training.

• There remain pervasive andnegative cultural expectationstowards working when less thanfully healthy, with IB seen assomething you can simply “pass on to”.

• Occupational health (OH) servicesare not easily available to providethe vocational rehabilitationrequired, whether to employers,to GPs wanting to refer patients,or to individuals. The UK has amuch lower provision of OH thanother European countries andsupply may not be sufficient,despite schemes such as NHSPlus284. Services vary in localavailability, lack volume capacity,and can be targeted andmarketed to a restricted group.

284 NHS Plus is a network of OH departments across England supplying OH services tobusiness at a cost, with a focus on SMEs

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• There is no recognisable map or structure of provision andtherefore a poor basis for capacity building and marketdevelopment, or for ready access by customers.

• It remains uncertain which specific interventions work best.Whilst there is evidence thatVocational Rehabilitation (VR)works there is little precisionbeyond a few conditions such asback pain and asthma as to whichformats and contents work bestwith particular client groups andconditions. However, this generallack of evidence seems to holdback progress even where the evidence is strong.

• Vocational rehabilitation can beseen by health professionals asseparate from rehabilitation frominjury or illness, with some danger that the more that VR issuccessfully promoted, the morecomfortable it can be for somehealth interests to sustain anarrower perspective than‘rehabilitation for whole life’.

• The changing nature ofconditions, with the presentationof many non- specific oftenpsychological symptoms, has led to uncertainty of treatment.

• Interventions often happen toolate, and only when options fortreatment of medical factors hasbeen completed, when theindividual’s motivation and work

connections have declined too far,and when non-employment has become a stable feature oftheir life.

Box 7.2: Current initiatives with a link to rehabilitation

• DWP has published a“Framework for VocationalRehabilitation”, which pullstogether information about bestpractice, research and availablecapacity, and will be developinga strategy for VR through abroadly representative steeringgroup alongside groups onresearch and standards.

• DH has published the WhitePaper “Choosing Health” and isplanning a Green Paper onAdult Social Care whichtogether with the DH five yearplan, the NHS ImprovementPlan, the NSF on Long TermConditions, and initiatives onChronic Disease Management,will provide significantopportunities to advance workas a component of good health.

• Government has accepted therecommendations of the BetterRegulation Task Force report“Better Routes to Redress” forDWP to develop mechanisms for earlier VR interventions, andfor DH to work with partners in government to improve the provision of NHSrehabilitation services.


• The Job Retention and Rehabilitation pilot is beingjointly run by DWP and DH, andis aimed at showing whetherretention in work of peoplefalling sick is best secured byemployment focussed support,health biased support, or acombination of the two.

• The Pathways to Work pilots aretesting of a range of policychanges including the provisionby the NHS under contract toJobcentre Plus of ”ConditionManagement Programmes”.

• The Scottish Executive hasestablished “Healthy WorkingLives” to improve occupationalhealth provision.

If rehabilitation is going to form aneffective part of an overall systemfor supporting disabled people intosustained employment, then currentapproaches will have to change.Instead, the system should aim toenable individuals to:

• identify their specificcircumstances (especially sicknessversus impairment) and providerehabilitation accordingly;

• remain in work for longer when sick;

• return to work easily andsmoothly from Incapacity Benefit;

• recover from injury and illness;

• move from “cannot work” to “considering work”;

• move into supported employment; and

• be able to carry out activity that is personally considered useful.

Analysis carried out for this reportsuggests that such a system wouldrequire:

• many more people to be assistedto think about and progresstowards work as an explicitoutcome of rehabilitation;

• individuals with health problemsto be empowered to access at anearly stage, typically three to fourweeks from onset of changedcondition, whatever help theyneed to look for and retain workor return to work;

• employers to act swiftly andassertively, along with GPs, toengage with employees fallingsick, to support their early returnto work;

• recognition that rehabilitationrequires the active contribution ofprimary care and secondary care aswell as vocational private andpublic providers with effectivepartnerships between them; and

• training and support to beprovided to employers and GPs.

There are a number of ways thatthis might be achieved – through a

combination of incentives, statutoryrequirements, investments andguidance applied to individuals,health professionals, organisationsand employers. There may also besignificant roles for the insuranceand voluntary sectors.

Recommendation 7.1:Rehabilitation

DWP/DH should develop andlaunch by 2008 a set ofarrangements for provision ofvocational rehabilitation whichassigns responsibilities andapportions responsibility for costs, is available and accessible to those in work at risk of losingtheir jobs, to those on IncapacityBenefit seeking to return to work, to those on Job SeekersAllowance; and to employers andagencies working in support ofthese people.

Achieving this recommendationshould involve:

• building a firm evidence basethrough development of theDWP Framework for VocationalRehabilitation, lessons from the Job Retention andRehabilitation pilot, evaluationof the Condition ManagementProgrammes running within thePathways to Work pilots, andtesting the HSE model for supplyof occupational health andsafety and return to worksupport to different clientgroups and employment sectors;

• building up capacity in occupational health, throughdedicated services in the privatesector, and in the public sectorsuch as NHS Plus;

• securing greater focus uponwork and employment through-out the NHS and private sectorhealth services, in line with theWhite Paper “Choosing Health”;

• structuring rehabilitationservices more clearly for thebenefit of all those who needthem, supply them and guidepeople to them;

• reappraisal of the roles,competences, deployment,training and workforce planningof health professionals foreffective rehabilitation; and

• considering how far employersand others can be expected tobear the costs, and the extent towhich there is a case for thetaxpayer to bear costs,consulting with business.

Progressing these actions willrequire leadership and assignedresponsibilities through:

• new arrangements for jointworking between DH and DWPtaking advice from DTI, HSE andJobcentre Plus, with ministerialdirection through the HealthSafety and Productivity TaskForce or similar group; and

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by DH inviting the Academy of Royal Medical Colleges to examinewhat more can be done tostimulate greater attention towork as a positive driver for goodhealth, and the implications forthe professions involved.

Recommendation 7.2a:Occupational health

DH and DWP should, from 2008onwards, encourage increases inthe supply of quality OH provision:

• Encourage more trainees andraise professional standards.

• Consider a wider range ofdelivery channels, for example,by allowing different relatedprofessionals to take on some of the duties currently requiringa qualified OH therapist, andmaking more use of low costdelivery channels such astelephone consultations, and encouraging OH championsin PCTs.

Recommendation 7.2b

DH and DWP should, from 2008onwards, encourage a greaternumber of employers to provideOH service to their employees.

• DWP and DH to research thebusiness benefits, includingvalue for money, of expenditureon OH. This should includeresearch into levels of awarenessof OH services among SMEs, andreasons why they are not used.

These benefits, together with practical examples of whatworks in rehabilitating andretaining workers, should thenbe disseminated to business.

• DWP and HMT to engage with the Association of BritishInsurers and employerrepresentatives to consider how income protectioninsurance premiums can offerbetter incentives to employersto monitor and deal withsickness absence.

The current gateway to incapacitybenefits is weak and poorly policed

Currently GPs are the mainguardians of the gateway toincapacity-related benefits. They have the overall responsibilityfor managing clients’ condition andare also required to provide medicalevidence to support patients’ claimsto Statutory Sick Pay (SSP); orIncome Support or IncapacityBenefit for those currently withoutemployment. GPs are required toissue regular statements, judgingwhether their patients are fit forwork until the Personal CapabilityAssessment test has been applied.

The medicalised approach is typically not appropriate

In general, GPs have dealt withdisabled people within the remits ofthe medical model of disability, andresponding to their patients’ needsby focusing on their functionalimpairment or ill health rather thanrecognising how external factors,

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such as access to the rightequipment or support at work willaffect them.

GPs lack information

GPs can have great influence on the individual’s decision whether toreturn to work. To be able to offersuch advice GPs need to have agreater awareness than at presentabout the health-related benefits of working. However, many GPsexperience a number of difficultiesin judging capacity for employment,including assessing subjective ordifficult to measure conditions suchas back pain, maintaining a goodGP-patient relationship and havinglittle or no access to specialistoccupational advice285.

GPs are not effectively linked toemployers or to Jobcentre Plus

Most GPs have had no direct contactwith Jobcentres and are unaware of existing employment programmesor are misinformed of availableroutes into employment to those on incapacity-related benefits. There are situations where benefitdependency is ingrained in thecommunity or family culture, andGPs may feel that adjustment to a new pattern of life would be very difficult for those people286.

GPs face a heavy workload

There is wide recognition of theadded pressure on GPs’ time createdby paperwork, which includesmedical certificates and other forms.

GPs provide a number of servicesincluding health care, medical adviceon their clients’ conditions andvaluable information to assist DWPdoctors in their assessment process.Lack of available time is often usedto justify GPs providing poor qualityevidence to DWP.

DWP is aware of the need to increaseGPs’ awareness and understanding of the health benefits of working.DWP issues guidance to all doctorsstating that they should alwayscarefully consider whether advising a patient to not go to work is themost appropriate response to theircondition. There are also a numberof initiatives (Box 7.3) to improvetraining and awareness of GPs in this area.

Box 7.3: Examples of current GP Initiatives

DWP are currently introducing aseries of initiatives targeted atstrengthening the information andtraining given to GPs on fitness forwork advice and certificationpractices. These include:

• a series of GP information aids,supported by the Royal Collegeof GPs, Faculty of OccupationalMedicine and the Departmentof Health, with advice andguidance on fitness for work,completion of sick notes,communicating with employersand evidence-based recoveryperiods following a range ofsurgical procedures;

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285 Hiscock, J and Ritchie, J (2001) “The role of GPs in sickness certification”, Department forWork and Pensions, Research Report No 148

286 Hiscock and Ritchie (2001).


• videos and DVDs with information about healthconditions, advice from medical experts, IB assessmentprocedures and the benefits of work;

• Internet based resources withfurther guidance on health and work, the certificationprocess, and official guidance on certification;

• an interactive online learningsite with an ‘approved’ module on certification practiceand, from February 2005 in conjunction with the HSE, a module about OccupationalHealth;

• phase 1 development, withCardiff University, of GP learningproducts on motivationalinterviewing for difficultconsultations;

• sponsoring of systematic reviewsto describe good practice in arange of areas including sicknessabsence and returning people to work;

• national conferences for GPsand other medical practitionerson certification and return towork initiatives; and

• presentations at postgraduatemeetings and seminars fromDWP doctors and doctors frommedical services.

Recommendation 7.3:The role of GPs

DWP and DH should, by 2007,work together in identifying, and in assisting GPs to adopt, bestpractice in patient care, takingaccount of the most recentevidence of the beneficial healtheffects of work, in the context ofGPs’ role in providing advice onfitness for work.

This might include:

• defining good clinical practice inthis area, collected by a credible,independent body acceptable todoctors involved in primary care,and formulated into evidence-based guidelines for GPs;

• developing a concertedimplementation plan and aneducational/behaviour-changingcampaign to get the messagesacross, especially inundergraduate training;

• introducing effective recordingand monitoring of GPcertification, so that quantitativedata can be collected and thecertification practices of GPs canbe measured (much as theirprescribing habits), and thatinformation used to:

• monitor individual GP certification performance; and

• link performance to retraining and re-validation; and

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• providing a system which allows feedback to GPs about theircertification practice thathighlights good and badperformance against evidence-based guidelines.

The process of assessing disabilitystatus is fragmented and long

There are five main ways of assessingdisability within the current benefitsand tax credits system.

• Incapacity for work consists of twomain tests of incapacity used forSSP, IB and IS:

• Own Occupation Test assesses anindividual’s ability to do his orher usual job; and

• Personal Capability Assessment(PCA) assesses an individual’sability to carry out a range of activities.

• Needing care, supervision orwatching over by anotherperson is used for the DLA carecomponent and AttendanceAllowance (AA).

• Unable or virtually unable to walk is used for Disability Living Allowance’s mobilitycomponent and for warpensioner’s mobility supplement.

• Degree of disablement is used forIndustrial Disablement Benefit,War Disablement Pension andVaccine Damage Payments.

At a disadvantage of getting a jobis used for Working Tax Credit(WTC); to qualify for the disabilityelement of the WTC one must pass a separate “disability test287”.

Eligibility to claim for one benefitmay also result in that benefit beingthe gateway to further claims.Numerous interactions existbetween DLA and other benefits.Most importantly, entitlement toDLA highest rate care componentexempts people from the PCAassessment and can therefore leadto IB entitlement (if people havesufficient National InsuranceContributions), with the exceptionof children who may get DLA butwill not get IB. In cases of disputewhere IB disallowance has takenplace, DLA entitlement can influencedecisions on IB entitlement at thestage of appeal.

The length of time it takes to get a decision through the PCA is alsoimportant. Clearing new cases byDWP medical services currently takeson average 13 weeks, while re-referrals take up to 20 weeks. The length of the PCA – sometimestaking months to reach a decision –can hamper return to work activity.

There are practical limits to howearly in the benefit claim the PCAcan take place.

• There are capacity issues linked tonumbers of doctors.

• There are risks of unnecessaryPCAs and quick repeat PCAs being

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287 In addition, registering as disabled with local authority social services departmentsrequires that a person is assessed as being “substantially and permanently disabled”.The same applies for getting a disability reduction in council tax.


required because a conditionmight be unpredictable in theearly stages – and so furtherincreasing static resource, labellingpeople as incapacitated early onrather than letting them leave oftheir own accord or GP actionwhich may discourage earlydeparture from IB.

Recommendation 7.4: Benefits assessments

By 2008, DWP should review the overall process of assessingeligibility for disability-relatedbenefits and investigate whetherdifferent assessments areappropriate in all cases or whetherthere is any scope for bringingthem closer.

Following the results of thePathways pilots, by 2006 DWPshould identify whether the PCA is at the nearest optimum point to the start of the claim, or can be further repositioned.

The Personal Capability Assessmentmeasures only functional capability

The PCA currently assesses abilitiesand disabilities of a person againstan “abstract concept of work”. The PCA assesses claimants in theirability to perform certain functions,e.g. walking, standing, seeing,hearing. The assessment is used todivide those required to search forwork (on Job Seeker’s Allowance(JSA)) from those with no workrequirements. Once the claimant

is eligible for IB, they are no longerrequired to search for work.

The main focus therefore remainsincapacity. The PCA does not providean assessment of the residualcapability, and certainly does notidentify what steps would beneeded – rehabilitation, training,workplace adjustments, etc – toenable the individual to return towork. However, DWP is currentlypiloting Capability Reports in thePathways areas to provide work-focused information about clients’conditions or impairments. They arecarried out in pilot areas in 70% ofthe cases in which a DWP doctorcarries out a face-to-face interviewas part of the PCA process.

Lessons from the original trial ofthese reports have been applied to the use of Capability Reportsin Pathways to Work pilot areas.Evaluation prior to the Pathways to Work pilots showed thatCapability Reports have little impact on a person returning towork but this is mostly due to poorPersonal Advisor training and lack of skills and awareness, which thePathways to Work pilots may beable to address288. Emerginganecdotal evidence from Pathwayspilots is much more positive. Further benefits could be expectedfrom an approach which movedbeyond functional impairment toaddress the range of barriers facedby a disabled person in looking toreturn to work.

288 Legard, R., Lewis, J., Hiscock, J and Scott, J. ( 2002) Evaluation of the Capability Report:Identifying the Work-Related Capabilities of Incapacity Benefits Claimants. ResearchReport 162, Department for Work and Pensions.

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Recommendation 7.5: the Capability Report

2005 onwards, DWP should rollout the Capability Reportnationwide, subject to evidence,as part of the national expansionof Pathways to Work. A strongfocus must be placed on wideningover time the scope of – and inputto – the Capability Report andassessing the level of support,including training requirements or condition managementprogrammes, on individual needs in order to progress into the workplace.

• This can be a joint process with input from DWP medicalservices, Personal Advisers andemployers, giving a completepicture of an individual’scapabilities and support needs.

• The process must be coordinatedby the Personal Advisor with a special focus on general labourmarket issues (skills and work,local labour market knowledgeetc) and job retention.

7.3 Improving employability Disabled people often have few or no educational qualifications,which places an important obstacleon their path into employment. Low educational attainmenttranslates into low skills and hencelow employability. In additiondisabled people require support inthe form of equipment, transport,structural changes to their workingenvironment or support workers.

Currently, responsibility for trainingand support is shared betweenemployers, employees and stateprovision. A more integratedresponse would improve disabledpeople’s employment chances andempower them to fulfil their rolesand responsibilities.

Disabled people are not benefitingenough from government-providedtraining

The adult skills system is theresponsibility of the Learning andSkills Council (LSC) which provideseducation and training for sixmillion learners over the age of 16.Its priorities include reducing thenumber of people without basicskills and making training availableto all sections of society.

Disabled people do not benefit as much as the general populationfrom government-provided training– only 9.5% of learners in LSC-funded provision are disabled,although 20% of the working age population are disabled.

The Learning and Skills Council has duties under the Learning andSkills Act 2000 to promote disabilityequality in all its programmes and to have regard to the needs ofdisabled learners. In line with its statutory duties, the LSC iscurrently reviewing its planning and funding of provision forlearners with learning difficultiesand/or other impairments.


Recommendation 7.6: Mainstreaming in the LSC

As part of its review of planning and funding of provision fordisabled learners, from 2006onwards, the LSC should aim to increase the proportion ofdisabled learners engaged ineducation and training at alllevels. DfES to lead.

In order to achieve this aim, the LSCwill have to ensure that disabilityissues are mainstreamed not onlywithin the LSC, but also within itstraining providers. The LSC alreadyhas a responsibility to raiseawareness of the DDA among itstraining providers, who are coveredby the DDA legislation (via theSpecial Educational Needs andDisability Act 2001, SENDA), andtherefore have a duty to make‘reasonable adjustments’ for anydisabled learners. The LSC has raisedawareness of these duties throughtraining courses and campaigns.Over the financial years 2003–4 and2004–5 DfES provided funding forthe LSC of £90m to improve disabledaccess to further education collegesand £40m to improve access to localeducation authority-run adultlearning providers.

“Welfare to WorkforceDevelopment”

As part of the implementation ofthe Skills White Paper289, theNational Employment Panel (NEP)examined measures to increasecollaboration between the welfare

to work and workforce developmentsystems, to ensure disadvantagedgroups, including disabled peoplehave the skills needed to succeed in the modern labour market. The resulting report Welfare toWorkforce Development containsrecommendations to join up theemployment and training systemsand providers, with particularmeasures to improve the situationfor disadvantaged people. The report makes several recommen-dations that will improve the skillssituation of disabled people.

• DfES and DWP to include in the mandatory work-focusedinterviews a joint programme toscreen and train an increasingproportion of IB recipients.

• Information Advice and Guidance(IAG) contracts should give apriority service to Jobcentre Plus’ clients lacking Level 2qualifications, and focus IAGadvice on the most efficient andeffective route to employability.

• The necessary financial supportshould be in place to encourageIncapacity Benefit claimants totake up training as a route back to work.

Recommendation 7.7: “Welfare to WorkforceDevelopment”

This report endorses theserecommendations, andrecommends that they areimplemented by the relevant

289 21st century: Realising our Potential. July 2003

169

organisations as a matter of priority. 2005 onwards, with DWPin the lead.

New and developing skills initiatives

The Government is currentlypiloting/developing new skillsinitiatives. These are not aimedspecifically at disabled people, buthave the potential to increase thenumbers of disabled people in work dramatically:

New Deal for Skills: NDfS isintended to focus on the low skilled,and will build on the entitlement of everyone to receive free trainingup to Level 2. Employers will beoffered better advice and moreflexible support to meet skills needs,along with free and flexible trainingfor low-skilled workers participatingin Employer Training Pilots (see below). The focus on basic skillswill be particularly relevant to alarge proportion of disabled people.They could particularly benefit fromthe proposed skills coaching service,which is intended to provide moreintensive individualised support tohelp people secure the skills andtraining they need to gainsustainable productive employment.

Employer Training Pilots: ETPs areemployer driven, with employersidentifying basic and vocationalskills gaps which affect theirproductivity. Employers will bereimbursed for giving low-skilledemployees paid time off work totake education and training courses,up to Level 2. The Pilots have been

popular, but their effectiveness fordisabled people could be improved.Whilst the majority of learners in the ETPs are working towardsNVQ Level 2, disabled learners aremore likely to be working towardsbasic skills.

Apprenticeships : On 10 May 2004new Apprenticeships wereannounced, to replace the currentModern Apprenticeships (MA). These reforms are intended to involve greater numbers of employers, and open upapprenticeships to a greater numberof people, extending provision to young people from age 14 andremoving the upper age limit –previously MA’s were only availableto 16-to 25-year-olds. Rates forparticipation by disabled people inFoundation Apprenticeships (12%)are comparable with other cohorts,but not for Advanced ModernApprenticeships, where it issignificantly lower (5%). Despite this shortfall, the newApprenticeships do not have aspecific aim to increase the numberof disabled participants.

Recommendation 7.8a: New Deal for Skills and EmployerTraining Pilots

DWP and DfES to ensure, from 2005 onwards, that the New Deal for Skills and EmployerTraining Pilots meet the needs of disabled people.

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Recommendation 7.8b:Employer Training Pilots andApprenticeships

From 2005, DfES to carry outfurther evaluation work tounderstand in more depth whydisabled people appear to fareless well in the Employer TrainingPilots and work with the LSC on impact measures for starts,completions, and employmentoutcomes of disabled people in Apprenticeships.

Advice and guidance must beaccessible and high quality

The provision of good quality adviceand guidance to disabled people isvery important, particularly becausemany disabled people are not awareof the funding and assistanceavailable to them for training.Information, Advice and Guidance(IAG) partnerships provide freeservices for all people over 19 to assist them in accessing orprogressing in learning. A recentNEP report on skills provision foundthe quality of IAG services to beextremely patchy and even whereeffective, are under utilised. Asexplained in Chapter 6, Connexionsalso has a requirement underSection 140 of the Learning andSkills Act (2000) to co-ordinate thetransition provision of disabledyoung people – but Connexions doesnot have the capacity to fully carryout this role.

Recommendation 7.9: Connexions and IAG

Connexions and IAG partnershipsshould have the ability to provide specialist advice todisabled people, either by makingsure that their mainstreamadvisors have the right skills, or through specialist advisers for disabled people.

• Connexions and IAG to reviewhow well their services meet theneeds of disabled people.

• Connexions and IAG to makedisabled people a target groupfor their services.

• Connexions and IAG advisers to have disability awarenesstraining.

DfES to lead, from 2005 onwards.

Access to equipment and support in work is crucial

Access to Work (AtW) currentlyprovides financial assistance towardsthe extra costs of employingsomeone with a disability. It isavailable to unemployed, employedand self-employed people and canapply to any paid job: full-time,part-time, permanent or temporary.

Box 7.4: Access to Work

An established public programmeoperating throughout GreatBritain since 1994, AtW isdesigned for people with long-term health problems

171EMPLOYMENT

or impairment who need extra practical support to take up workor do their job. The aim of theprogramme is to reduceinequalities between disabled and non-disabled people in theworkplace by removing thepractical barriers to work. Types of support include:

• a communicator at a jobinterview for people who are deaf or have a hearingimpairment;

• a reader at work for someonewho is blind or has a visualimpairment;

• a support worker if someoneneeds practical help because oftheir disability either at work orgetting to work;

• travel to work element will payup to 100% of the approvedcost of a vehicle, or adaptationsto a vehicle, or help towards taxifares or other transport costs ifsomeone cannot use publictransport to get to workbecause of their impairment.

• equipment or alterations toequipment necessary because of individual disability; and

• alterations to premisesor working environment necessary because of a person’simpairment or the barriers they face.

The funding available depends on the employment status of thedisabled individual at the time of application. For:

• unemployed people starting a job and all self-employedpeople – the programme will pay up to 100% of allapproved costs;

• people changing jobs – theprogramme will pay for up to100% of all approved costs; and

• employed people who havebeen with the employer for sixweeks or longer – AtW pays theentire cost of support workers or those involving help withtravelling costs. For adaptationsto premises and equipment andspecial aids and equipment, andonly for the sub-set of applicantswho have been with theircurrent employer for more than six weeks and are not selfemployed, AtW will not makeany contribution to costs below£300. Above this sum, theprogramme will pay 80% of the costs up to £10,000 and up to 100% of the costsabove £10,000.

Recent evidence has shown apositive feedback from AtW users.More than nine out of ten users saidthat AtW met their requirementscompletely or mostly and almosthalf of users said they could notwork without it290. Employers valuegrants from AtW towards expensive

290 Thornton, P., Hirst, M., Arksey, H. and Tremlett, N. (2001) Users’ views of AtW: FinalReport of a study for the employment service. Research & Development Report ESR72,Employment Service: Sheffield.


IT equipment that involvesupgrading costs, and having thecosts of support workers met –especially where the costs of makingan alternation to the premises or of providing on-going humansupport on the job are substantialand the employer is unwilling orunable to pay.

Evidence shows that grants under the programme can act as an incentive to hire a disabledperson or retain an employee whobecomes disabled291. But where anemployee needs special aids andequipment to continue to do thejob, availability of grants under theprogramme does not appear to be a strong factor in retention of theemployee292. Almost half ofemployers believed their employeewould be in the job without AtW293.However, feedback from employerssuggests the financial contribution is important for SMEs.

Some organisations lack expertise in finding the right solution for an employee, and they valued thisaspect of AtW. But anecdotalevidence suggests that in some cases specialist assessors also lack the skills to do proper assessmentsand users are persuaded to acceptvery expensive equipment which

is not necessarily the best value of money for them.There also appears to be someconfusion over the ownership ofequipment. A survey showed thatone in three employers did not knowwho owned it and a third ofDisability Employment Advisers(DEAs) also felt employers wereunsure about ownershipresponsibilities. However, very fewemployers had any concerns aboutownership or purchasing. Whereequipment does not belong toindividuals, this makes it difficult forthem to move jobs294.

Although opinions varied, the mainareas users identified forimprovement were:

• the time taken for specialequipment and workplacealterations to be provided;

• follow-up by AtW staff once the support is in place;

• more promotion of theprogramme; and

• fuller information about the rangeof options available throughAtW295.

Consultations with disabled peopleand employers have re-iterated the

291 Thornton, P. (2003) What works and looking ahead – UK policies and practicesfacilitating employment of disabled people, SPRU.

292 Thornton (2003).293 Thornton, P. and Corden, A. (2002) Evaluating the Impact of AtW: A Case Study

Approach, Research & Development Report.294 Hillage J, Williams M, Pollard E. (1998) Evaluation of AtW, Employment Service Research

Report295 Thornton et al (2001)

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need for the above improvements inthe programme. Employers areparticularly concerned with thespeed of the programme, many havecomplained of waits of six monthsor more for equipment andadjustments. This is too long foremployers to wait for an employeeto be able to do their job. Lack ofawareness among smaller employershas also been highlighted as aproblem, especially as it is smalleremployers who are more likely to beconcerned about the costs ofadjustment when consideringemploying a disabled person.

Recommendation 7.10: In-work support through Access to Work

By 2010, DWP should restructurethe ways of providing in-worksupport through AtW. Theobjective of the new system wouldbe to offer a new personalisedsystem of in-work support which iseffective and targets the rightpeople at the right time withoutany delays, and which aims toincrease recruitment and retentionrates of disabled people

In the short term:

• DWP to examine possibleoptions for increasing theemployer contribution thresholdand uprating them annually;and

• DWP to evaluate the likelyimpact of restricting orremoving the ability of central

government departments to make use of AtW funding for disabled employees – and to make any changes to AtW in the light of this evaluation. The public sector has a role in promoting employmentopportunities for people whoare currently socially excluded,in order to promoteregeneration and social justice.On these grounds, there are strong arguments forrequiring central governmentdepartments – and potentiallythe wider public sector, in duecourse – to make provision intheir expenditure baselines forthe costs of employing disabledemployees. This would free upadditional funds for use by smalland medium-sized businesses.However, the practicalimplications of such a changeneed to be carefully assessed –there must be no negativeimpact (even if only short-term)on the employment prospects of disabled people. Governmentdepartments should alsocontinue to have access to the advice provided by AtW advisors.

In the longer term:

• allocate ownership of personalequipment and services (such ashuman support and transportfares) provided by AtW, whichare personal to disabled people,to disabled people themselvesand separate these from those

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equipment and services that are particular to the employer andattached to the workplace environment, to build on the existing option of “ownership”of travel to work and supportworker costs under AtW;

• DWP to consider using DirectPayments to pay for thepersonal equipment and servicesdescribed above, or attach thefunding to the individualbudgets described in Chapter 4,to encourage people to exercisechoice and control;

• streamline, shorten and improvethe process of assessment ofemployment needs

• DWP to consider allowing self-assessment, supported by anaudit process, to ensure thatusers are given the best possibleadvice when purchasingequipment;

• link assessment with the mainJobcentre Plus contact at anappropriate stage (just beforethe person is ready to enteremployment); and

• investigate the ways in whichdisabled people could own theirassessment and enable a systemof “passporting” where disabledpeople may transfer a genericassessment to the next job.

7.4 Connecting disabled peoplewith work and in work supportTransition to employment is oftenperceived by disabled people asrisky and complicated

Disabled people who have beenaway from the labour market for a long time may experience lack of motivation as well as lack ofconfidence. Any difficulties offinding a job can be made worse bycomplicated rules, lack of directionor negative attitudes. In additionmany people feel that work mighthave a bad effect on their health,even though inactivity might beworse for their general well-being.

Disabled people’s static position inthe labour market is apparentthrough their often unsuccessfultransitions into and out of work.The average annual rate of disabledpeople making a transition intoemployment from economicinactivity is 4%. The equivalentfigure for non-disabled people is sixtimes higher296.

Evidence on why disabled peopleperceive the transition intoemployment to be risky andcomplicated is mostly anecdotal.However, the majority of disabledpeople this project consulted withidentified five main reasons whythey perceive the transition intoemployment being a risky and/orcomplicated process.


296 Burchardt, T (2003) “Being and becoming: social exclusion and the onset of disability”,ESRC Centre for Social Analysis of Social Exclusion, London School of Economics, CaseReport 21, London

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i. Incapacity Benefit claimants areafraid of benefit reviews –claimants are wary that lookingfor work would trigger a benefitreview, which in turn can deprivethem from their benefit claimingstatus.

ii. Incapacity Benefit claimants arewary of the financial implicationsof leaving benefits – financialincentives are still quite limitedfor a substantial proportion ofthe claimant population. In factupon entering employment asignificant number of disabilitybenefit recipients experience aloss or no change of income. Veryfew of those working 16 hours aweek experience gains of morethan £40 a week297.

iii. There is limited awareness of theexisting return to work “linkingrules” – claimants are wary ofhaving to reclaim their wholebenefits package, and possiblyrunning into the same difficultiesthey had in securing it in the firstplace, if their job did not workout298. Even those who return tobenefits using the “linking rules”have to have spent a further 28weeks on benefit before thelinking rules can apply again299.

Box 7.5: The linking rules for Incapacity Benefit

People who leave IncapacityBenefit, to move into full-timework or training are entitled to re-claim their old benefit, for thesame health condition, at any timewithin 52 weeks of starting work or training. The advantage of thisis that they are guaranteed to getback their old benefit on the sameterms and at exactly the same rateas before.

Individuals must inform theDepartment for Work andPensions (DWP) by telephone or in writing that they havestarted work within four weeks of coming off benefits. They willthen receive a letter from DWPconfirming when the 52-weekperiod runs out.

People may also be able to reclaimtheir old rate of IB within twoyears if they have been in receiptof Working Tax Credit orattending a training scheme for more than 16 hours a week.People who claim Housing (HB)benefit can reclaim HB within 12weeks of leaving the benefit.

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297These calculations do not include Working Tax Credit and Return to Work Credit298 From April 2004 people claming IB and SDA will continue to claim HB and CTB for the

first four weeks after starting work. This has been seen as a step in the right directionalthough improvements still remain to be made to improve the speed by which claimsare processed.

299Anecdotal evidence and evidence from our consultations suggest that many people haveeither no knowledge of the linking rules or do not understand them. In the case of HB,claimants have criticised the period of 12 weeks as being too short and expressed fearsthat delays in re-assessing benefit entitlement encourage a vicious circle of poverty asHB applicants struggle to make ends meet while re-assessment takes place.


iv. There is limited awareness of thefinancial incentives to return towork provided by tax credits – tax credits have a disabilityelement that can improve thefinancial incentives for disabledpeople returning to work for 16hours or more a week. However,awareness and take up amongdisabled people is low.

v. Permitted work rules forincapacity benefit claimants arerestrictive – People claiming IS canwork under permitted work rulesfor four hours at nationalminimum wage without havingtheir claim reduced. They oftenwrongly assume that they arerestricted to working only fourhours or they are discouraged toincrease their work hours if they

know they will not gain morethan £20 for up to 16 hours work– the point at which Working TaxCredit kicks in. This perceived gapbetween five and 16 hours hasbeen repeatedly criticised asundermining the flexibility of thesystem and disadvantaging thosewith fluctuating conditions whomay not be able to easily progressto 16 hours work after they passthe four-hour disregard mark.

Box 7.6: Permitted work rules

Permitted work rules describe thetype of work an individual mayundertake while on benefits. They aim to gradually bridge the gap between benefits and full-time work by allowing peopleto work up to 16 hours a weekand still be on benefits.

0

200

400

600

800

1000

Loss of more

than £20

Loss of up to £20

No change or gain ofup to £20

£20 - £40 £40 - £60 £60 - £80 £80+

tho

usa

nd

s

16 hours

30 hours

Change in net income

Figure 7.2: Predicted gains to IRB* recipients entering work at 16 or 30 hours a week at £4.50, in 2004-5 (no working taxcredit elements)1

1 Eligibility for Tax Credits would improve these outcomes

177

Incapacity benefit claimants can try some paid work without theneed for prior approval from adoctor. They can either work forearnings of up to and including£20 a week for an unlimitedperiod or for 16 hours a week, on average, with earnings up to and including £72 a week for a 26-week period. This period can be extended for another 26weeks if a Job Broker or PersonalAdviser agrees that it will help a person’s progress towards full-time employment.

Supported permitted work allows claimants to earn up to and including £72 per week for an indefinite period if they arereceiving defined ongoing support or supervision.

Recommendation 7.11a: Linking rules and incentives to work

From 2006 Jobcentre Plus (withDWP in the lead) to provide betterinformation and guidance tobenefit claimants on the linkingrules and existing financialincentives to return to work.

• Personal Advisers in JobcentrePlus should be more proactive in delivering information andraising awareness about theflexibility of the current benefit system as a mechanismfor improving transitions into employment

Recommendation 7.11b:Permitted work

In the light of recent evidencefrom the evaluation consortiumand DEAC, DWP to deliver, in2006, changes to the permittedwork rules system, and also to further investigate the 5–16 hour issue.

There is a need for a personalisedservice of support, proactive jobsearch and job-to-skill matching

Job retention rates are low fordisabled people

Even allowing for the fact that somedisabled people cannot or do notwish to move into employment, theproportion of non-disabled peoplelikely to get work is still four timesthat of disabled people. Of thosewho take the big step and make atransition into work, one in threeare out of a job again by thefollowing year, compared with one-fifth of non-disabled people.300

Inability to retain a job howeverdoes not only happen when disabledpeople move back into employmentafter a spell of inactivity. There isalso serious concern about jobretention of people who becomesick or disabled while in work.Survey data analysis301 suggests that80% of all those who becomedisabled are in employment at thetime of onset, falling to 60% thefollowing year and 36% the yearafter that.

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300 Burchardt, T (2003)301 Bardasi, E, Jenkins, S and Rigg, J (2000) “Disability, work and income: a British

perspective” Institute for Social and Economic Research Working Paper 2000-36,University of Essex


Disabled people are often notmatched to the right job

Anecdotal evidence from the groupsof disabled people this projectconsulted with suggests that somejob brokers or advisers matchdisabled people to the first jobavailable without any regard totheir skills or previous experience.Those who are the furthest awayfrom the labour market may needalternative work opportunities tohelp them move closer. However,many are provided with cycles oftraining which keep them furtherfrom the labour market and do notgive them any relevant work skills.From the opposite perspective,Jobcentre Plus advisers feel thatthey lack the skills to address certaincomplex issues with their clients andare anxious about asking themquestions on health conditions302.

Evidence from New Deal forDisabled People (NDDP) evaluationssuggests that the level of awarenessof NDDP by members of the eligiblepopulation and employers is low. In addition, job brokers who werekeen to meet their targets focusedon the more work readyparticipants303.

Box 7.7: New Deal for Disabled People

The New Deal for Disabled People(NDDP) is the major employmentprogramme available to peopleclaiming incapacity-relatedbenefits, and it is an important

part of the Government’s welfare to work strategy. NDDP provides a national network of Job Brokersto help people with healthconditions and disabilities moveinto sustained employment.

It is a voluntary programme that aims to help people onincapacity benefits move intosustained employment. It isdelivered by around 60 JobBrokers, who are a mix of public,private, and voluntary sectororganisations. Many provideservices in partnership with otherorganisations. People wishing to participate in the programmemust register with a Job Brokerand have a choice over their Job Broker.

Additional funding of £30millionin 2005–6 was announced in thePBR to ensure the continuation ofthe New Deal for Disabled People.

Job Brokers’ links with prospectiveemployers are often limited.Participants are sometimes critical of Job Brokers’ perceived failure to deliver jobs to them. Someparticipants expected Job Brokers to have closer links with employersthan many of them do in practice.They feel that these links must bestrengthened.

302 Thornton, P. (2003). 303 Corden, A., Sainsbury, R. and Thornton, P (2004). New Deal for Disabled People (NDDP):

first synthesis report, No. 199, Department for Work and Pensions

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Box 7.8: Case study of mismatching jobs and skills

Stephen was an IT manager for a big international company in the UK but left work because of depression. After being onbenefits for five years, Stephenfelt that he was ready to return to work and visited his localJobcentre to discuss options withhis disability employment adviserwho then referred him to NDDP.The NDDP Job Broker suggested to him that he took up a job as a dishwasher. Stephen felt that his skills should enable him to at least try a job closer to hisprevious one but was notencouraged to do so or offeredadvice on how to go about it. He decided to stay on benefits.

A personalised case managementapproach should deliver betteroutcomes

Evidence from the US shows theimportance of skilled case managerswho can provide support, assist with tackling barriers and helpparticipants gain access to thesupports, additional help and jobleads that are accessed throughformal and informal networks.Intensive case management, personalgoal development and supportservices had a significant impact on the subsequent earnings andemployment of individuals who facemultiple employment barriers304.

Recent evidence indicates thatadvisers believe it essential to take time to build a picture of theindividual’s skills and interests, past experience, aspirations, likesand dislikes, and preferred areasand hours of work (vocationalprofiling) so that people could make informed choices305.

Box 7.9: Good practice example of a social enterprise –Breakthrough UK Ltd

Breakthrough UK Ltd is a socialenterprise managed and run by amajority of disabled people; theirmain activities centre on trainingand employment support fordisabled people in Manchesterand Liverpool. Breakthrough UKLtd supports disabled peopletowards independence, with afocus on working towardsemployment, and influencingpolicy and practice both locallyand nationally. Their servicesprovision and activities involve,employment support, work-related training and independentemployment advocacy

Breakthrough UK Advisers’ roles are to:

• receive referrals from SocialServices, Jobcentre Plus, otheragencies or self-referrals (30%);

• conduct an initial employmentinterview and put together apersonal profile (including skill

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304Finn, D and Simmonds D (2003) "Intermediate Labour Markets in Britain and anInternational Review of Transitional Employment Programmes" University ofPortsmouth, Centre for Economic & Social Inclusion.

305 Weston, J, Jones, C and Stalker, K (2002) “Choosing, Getting and Keeping a Job: A Studyof Supported Employment for People with Complex Needs”, Scottish Human Service Trust.


assessment, agreeing goalsand developing tailor-madetraining programmes);

• develop clients’ job skills(update/develop C.V., completeapplication forms, writecovering letters, conduct mockinterviews and improve personal presentation);

• identify suitable vacancies (usingexisting employer contacts andcurrent local labour marketinformation or speculativeapproaches to companies);

• market client to employers(focusing on their strengths and support then through therecruitment process);

• provide planned follow upsupport to both client andemployer; and

• “sign off” client as appropriate,but remain available.

This report supports the currentPathways to Work initiatives thatshould put in place an enhancedcase management service for allpeople. Key roles for the casemanager will include:

• conducting the assessment ofneed for services, providingsupport after the initial JobcentrePlus contact and conductingfurther Work Focused Interviews;

• subject to evidence on itseffectiveness, use the “screeningtool” designed to identify thosewho do not need intensive casemanagement because they arelikely to move into employment in a short period of time;

• maintaining a long-termrelationship with the client,building trust and payingattention to individual needs; and

• managing a personalised actionplan, drawn up in partnershipwith the client and tailored to theclient’s needs, irrespective ofcircumstance.

Over time, it will be important thatthis work-focused case managementrole in Jobcentre Plus links upeffectively with similar roles in otherorganisations (e.g. local authorities,CILs), in order to jointly promotesupport for independent livingacross disabled people’s lives.

Recommendation 7.12: Job broker activity

By 2006, subject to resources, DWP should improve referralarrangements across to NDDPbrokers, both via self-referral andJobcentre Plus case managers. In addition the role of the Jobbroker should be developed to include:

• a clearer set of core activities;

• proactive job search;

181EMPLOYMENT

• more accurate job matching to enhance retention; and

• better links with employers, but ensuring that vacancy fillingis client led.

Disabled people must be empoweredand well-supported in order toenhance their employability

By 2025 all disabled people who are able and willing to work shouldhave the opportunity to get andretain employment, whereverfeasible. This includes getting the right support from employers,health and social services, JobcentrePlus and from all other relevantagencies and individuals.

Over three million disabled peopleare in work. But another threemillion are not in work. Of thosewho are economically inactive as a result of ill health or impairment:

• some will need little support toenter full-time employment;

• for some, full-time employment islikely to be an option in the nearfuture with some additionalsupport or some intermediatestops in part-time work or ineducation and training;

• some will be further from full-timeemployment or are unlikely toreach full-time employment at alland will require part-time or othertypes of employment andmeaningful activity; and

• for a small minority no form of employment is ever likely to be practical306.

The Prime Minister said recently thatthe UK should aspire to increasingits employment rate from thecurrent level of 75%, to around 80%of people in work307. This wouldmean over 1.5 million more peoplein work – and would certainlyrequire a substantial increase in thenumber of disabled people in work,as part of the overall growth inemployment. There is evidence308

to suggest that around one milliondisabled people who are out ofwork would like to work. Enablingthese people to get into work wouldmake a substantive contribution toachieving an overall employmentrate of around 80%, and wouldsignificantly increase the currentemployment rate for disabledpeople, which stands at 50%309. Over time, there is not reason whyeven more disabled people should

306 Evidence suggests that many more of those people currently described as “difficult”cases would be able to find work or benefit from alternative activities.

307 Prime Minister’s Speech on the Opportunity Society, Beveridge Hall, University ofLondon, 11th October 2004

308 Stanly K. and Regan S. (2004) The Missing Million: Supporting disabled people intowork. Institute for Public Policy Research.

309 Other things being equal, supporting one million more disabled people intoemployment would increase the employment rate for disabled people to 65%. However,this employment rate is based on self-reported survey data, and it would be expectedthat people’s employment status might have some influence on their propensity to self-define as disabled. Hence the overall employment rate may be a misleading indicator ofprogress – though it remains a useful measure, and the 65% figure provides animportant benchmark.


not be in work, particularly if themeasures recommended in thisreport lead to more disabled people wanting to work. It will beimportant that the employmentprospects of all disabled people areimproved – not just those nearest to finding a job.

Helping people to gain and keepemployment should be seen as aprocess of many parts where theindividual is seen as moving along a continuum of training, workplacements, voluntary work andopen employment. To providesupport more effectively and satisfythe needs of a diverse population a “menu driven” approach must be followed.

A menu of choices should involve310:

• job search assistance and support(see recommendation 7.12);

• work-focused skills training;

• condition managementprogrammes;

• work trials;

• work experience programmes;

• transitional employmentplacements;

• structured voluntary employment;

• in-work support; and

• open employment.

Clients who require support to enterthe labour market would be able to choose in consultation with theircase manager a range of elementsfrom the above menu irrespective of the type of benefit they receive.Case managers should be able topropose the most appropriate typeof support depending on the client’sneeds and progress along his or heraction plan.

The idea is that individuals wouldmove along the continuum receivingprogressively less support, as theybecome ready for each stage,ending in open employment. This continuum of support would be dynamic, person-centred andaimed at delivering services todisabled people in and on the route to employment effectively and promptly. The main advantageof this approach is that supportwould be tailored to individuals’needs. Personalisation and flexibilityof service would enable theindividual to get the right supportat the right time. Services would beprovided both by voluntary, publicand private sector to enhance theelement of contestability andimprove value for money.

DWP has published the “Building onNew Deal (BOND)” paper to set outthe Government’s strategy for theevolution of welfare to workpolicies. This report supports thisinitiative and supports also thePathways to Work case managementapproach (discussed above), which is helping to promote a menu-basedapproach for supporting disabled

310 This menu closely reflects the choices package available in the Pathways areas.

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people into employment, Individualsconsulted by the Strategy Unitidentified the importance ofpersonalised service and genuinechoices as key to the success of a menu-based approach. Moregenerally, a successful scheme willrequire:

• the existence of a clear and visibleframework for support, publicisedto disabled people and whichenables them to understand themenu of options available to themand to make informed choices;

• clients will get access to serviceswhich are tailored to theirparticular personal needs;

• individuals to be offeredopportunities for employment or rehabilitation from a menu of options depending on their circumstances;

• the action plan drafted with theircase manager to be updated andfollowed along the way with clearmilestones of progress marked;

• there must be justification of eachtraining course, work placement,health intervention etc., to showhow these choices fit with theclient’s needs and employmentpath; and

• alterations to the plan can takeplace as clients move through thecontinuum as their needs change.

There is some evidence on the benefits of supportedemployment schemes

Research has generally found thatsupported employment is a betterfinancial option for disabled people than for those who earn sub-minimum wage in shelteredworkshops. The cost-efficiency ofworkplace supports increases overtime and becomes cost-efficient totaxpayers around the fourth year of operation. Even individuals withsevere and multiple impairments are cost-efficient from the taxpayers’ perspective311.

In the UK312 researchers estimatedthat for every £1 invested insupported employment, thetaxpayer gets back around 43p from savings elsewhere in thesystem. As agencies become moreexperienced, the cost-benefit ratioimproves. For agencies operatingover five years the taxpayer recoups54p in the £1 (in the US returns tothe taxpayer tended to be higher).

Box 7.10: Supported employment

There is a range of models ofemployment support in England,including sheltered workshops,social firms, intermediate labourmarkets, supported employmentand individual placement and support schemes. A cost-effectiveness study commissionedfor the Social Exclusion Unit

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311 Wehman, P and Revell, G (2003) “Lessons learned from provision and funding ofemployment services for the MR/DD population. Implications for assessing the adequacyof the SSA Ticket to Work”. In Paying for results in vocational rehabilitation, editorsRupp, K and Bell, S, H, The Urban Institute.

312 O’ Bryan, A, Simons, K, Beyer, S, and Grove B (2000) “A Framework for SupportedEmployment, Policy Consortium for supported employment”.


concluded that supported employment and IndividualPlacement and Support projectswere significantly more effectivethan other approaches in enablingpeople with mental health needs to find and keep open employment313.

WORKSTEP is the current supportedemployment programme providedby Jobcentre Plus, with an emphasison increasing the proportion ofpeople who move from supportedto mainstream employment.WORKSTEP provides support in jobsto disabled people who have morecomplex barriers to finding andkeeping work but who, with theright support, are able to make avaluable contribution in their joband, where appropriate, developand progress to open employment.

Around 26,000 disabled people aresupported in work through theprogramme, either supported in jobs in the open labour market or in factories and businessesestablished to employ disabledpeople. WORKSTEP enablesindividuals to work effectively in a job by identifying their needsand providing the necessary supportto fit their requirements. It offers a range of support to employers and employees and other practicalhelp including, for example a jobtrainer or job coaching, mentoring

from colleagues, or advice andawareness support for to theemployer and employees.

WORKSTEP follows an outcome-based funding approach toappropriate stages in theprogramme such as developmentplanning, job entry and progressionto unsupported employment. The programme continues to offerlong term support in the workplacefor those individuals who need it.Most providers offer substantial pre-employment support to ensure thatindividuals are working towards theright goal for them. There remainswithin the programme a need tocontinue to offer considerablesupport to some people to enablethem to sustain employment.

A recent review of new WORKSTEPproviders found that findingemployers proved to be problematicfor most, but not all, WORKSTEPproviders. Those with goodemployer networks and skills inmarketing clients to employers werethe most successful. Differingemphasis was placed on deliveringin-work support, ranging from full-time support on the job, and the promotion of workplace‘buddies’, to job coaching in theearly stages314.

While progression to openemployment is an outcome of theprogramme, concerns about

313 Curran C, Knapp, M and Beecham, J, (2003) “Mental Health and Social Exclusion:Economic Aspects”, Paper prepared for the Social Exclusion Unit by Personal SocialServices Research Unit, London School of Economics and University of Kent at Canterbury

314 Thornton, P., Banks, P., Riddell, S. and Beyer, S. (2004) A Study of Providers New toWORKSTEP, W195, Sheffield: Department for Work and Pensions.

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meeting contract numbers meantthat new providers did not prioritisethis. Indeed, job starts tended to beconsidered the measure of successand progressions were seldommentioned as an outcome. Claiming monthly payments wasmore profitable than claiming aprogression payment, at least untilcontracted places had been filled315.

Recommendation 7.13: Supported employment

DWP should, from 2006 onwards,increase the flexibility of budgetswithin its current supportedemployment programmes awayfrom programmes which fail tointegrate disabled people inmainstream employment and into programmes which:

• assist disabled people progresstowards open employment;

• provide value for money; and

• fulfil the wider objective of social inclusion for alldisabled people.

This would imply reviewing the links of current supportedemployment strategy with needsprovision and how resources arecurrently met by local authoritysocial services departments.

7.5 Engaging employers316

Employers often lack awarenessabout what it means to employ a disabled person

Employers can have negativeattitudes towards disabled people

A recent survey found that only 62%and 37% of employers said theywould take on a worker “with aphysical or mental disability”respectively317. Mental health is aparticular concern for employers,often relating to interactions withcolleagues and customers. Employersmay also overestimate the costs ofworkplace adjustments needed toemploy a disabled person318.

Employers may not be aware ofemployees and potential employees’additional needs

Employers’ attitudes are oftenperceived as a barrier by disabledpeople and may encourage non-disclosure of even a reluctance toapply for work. Evaluation of theNDDP319 shows that often once adisabled person starts work, they no longer consider themselves to be disabled. Employers may thenbelieve disabled people do not applyfor their vacancies and that they donot employ any disabled peoplewhen this is not true.

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315 Thornton et al (2004).316 Recommendations in this section draw on the report of the NEP Employers’ Working

Group, which has advised this project.317 DWP research report 139 ‘Recruiting benefit claimants: A survey of employers in ONE

pilot areas.318 Remploy website.319 DWP research report 143 ‘Evaluation of the New Deal for Disabled People pilots’.

This may partially be due to the wayemployers think of disability. Oftenemployers have a narrow view ofdisability, focusing on visible physicalimpairments, which they associatewith incapacity to do things andextra costs320.

Employers’ perceptions of the lawon employing disabled people

Employers may not recruit disabledpeople due to fears about futurerisks of discrimination procedures.The DDA is considered to be muchmore effective in preventingdiscrimination for those inemployment, rather than fordisabled people applying for jobs.Just 9% of disability employmenttribunal employment cases arebased on recruitment, the remaining91% are dismissal and reasonableadjustment cases. Employers mayfeel it is safer not to employdisabled people in the first place.

The employers’ working group (see Annex B) has recommendedthat government publicity making a generic business case will not beeffective in engaging the majority of employers. Employers are morelikely to be interested in case studiesof successful practice, and in advicefrom other employers, rather thanmessages from government.

DWP has recently set up anEmployer Engagement Project,which is due to report by the end of2005 on how government can betterengage employers and encourage

and support then to recruit andretain more disabled people. The outcomes of this project willbetter inform government on howto take forward employer-employerawareness.

Recommendation 7.14: Employer awareness

Employers should lead a campaignpromoting the business benefits of employing disabled people, toinclude case studies from differentsectors and sizes of firms.

DWP and DTI should, from 2006onwards, consider what role theyshould take in such a campaign inthe light of the results from theDWP Employer EngagementProject. A successful campaign willalso need the leadership of anorganisation trusted by employersof different sizes and from allsectors; potential organisationsinclude CBI, FSB and ACAS. The DRC would also need to beinvolved to ensure that issuesrelating to legal obligations andreasonable adjustments wereadequately reflected.

Case studies would need to be acentral part of the publicity, thiswould be particularly useful toallow (smaller) businesses to seehow any barriers to recruitingdisabled employees wereovercome and where employerssought advice.


320 DWP research report 173 ‘Intermediate labour markets in Britain and an internationalreview of transitional employment programmes’

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As well as targeting employers andchanging their attitudes, the general‘climate’ and perceptions of disabledpeople by the general public arecritically important. The media andadvertisers have the power to makea real difference here. As disabledpeople become more represented in the mainstream media, and otherwalks of life (e.g. mainstreamschools), this will have an effect onemployers’ attitudes and acceptanceof disabled people in the workplace.

There is already some good progressin this area. The Broadcasting andCreative Industries DisabilityNetwork brings together the UK’smajor broadcasters to explore andaddress disability as it relates to the media industries. The Networkmakes it easier for members torecruit and retain disabled peopleand to promote and share bestpractice across the industry. TheGovernment has also given OFCOMa specific responsibility to haveregard to the needs of disabledpeople in carrying out theirfunctions, and a duty to establish acommittee to advise on the interestsof disabled people. OFCOM also hasa duty to promote the equalisationof opportunities for disabled peoplein relation to television and radio,and a corresponding duty is placedby them on broadcasters. TheGovernment’s “Images of Disability”initiative has had a major impact onadvertising and on how disabledpeople are represented321.

Despite progress, however, disabledpeople are still very under-represented in the mainstreammedia. There is a particular shortageof disabled people whose disabilityis ‘incidental’ to their role anddisabled people in employment;there are still too manyrepresentations emphasising how‘different’ disabled people are.

This report welcomes the progressmade by some media organisations,especially broadcasters, to improvethe media portrayal of disabledpeople, supported by betteremployment opportunities in mediaorganisations, and the new dutiesplaced on OFCOM. All mediaorganisations are urged to examinetheir editorial and employmentpractices to ensure that theychallenge prejudice and avoidreinforcing stereotypes.

Government as a major advertisershould continue to work towards agreater representation of disabledpeople, particularly in employmentsituations, in its non-disabilityspecific material.

There is a lack of support availableto employers recruiting andretaining disabled employees

At the recruitment stage andbeyond, employers need advice andsupport on how to make anynecessary adjustments. For example,‘DWP research into employerspreparations for the October 2004changes in the DDA found there was

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321 See www.disability.gov.uk/images_of_disability/.


322 DWP research report number 202 ‘Disability in the workplace: Employers’ and serviceproviders’ responses to the Disability Discrimination’

a degree of uncertainty as to whatconstitutes ‘best practice’ in makingadjustments and respondentsreported that practical exampleswould be welcome322.

Employers also have concerns about how to deal with situationsthat may arise when an employeebecomes disabled or their impairmentchanges. This will be a particularconcern for small employers who may not have previous experience of employing a disabled person. The lack of support and knownsources of advice for employers hasbeen highlighted as a major issue by the Employers’ Working Group.

Some support to employers iscurrently available from a diverserange of sources. Examples includeAccess to Work which providesadvice as well and financial help;Employers’ Forum on Disabilitywhich runs an advice line for itsmembers; and Business Link’swebsite which provides advice onDDA and workplace adjustments.

There are also a large number ofservice providers working withemployers to help them recruit and then retain disabled people,many of which are local small scaleorganisations. These vary a greatdeal in the service provided toemployers. In addition toBreakthrough UK (Box 7.9),Papworth works with employersacross eastern England to supportthem to retain staff becomingdisabled (through its rehabilitation

programme), recruit disabled staff,and meet their skills requirements –as well as providing advice on the DDA.

While many of these sources ofsupport and advice offer aneffective service to employers, thesheer number of organisations, thevariation in support provided alongwith difficulties employers face infinding out about these providersmean employers are not benefitingas much as they could.

Feedback from employers, showsthat employers, especially SMEs, findthe system difficult to navigate anddo not have the expertise or thetime necessary. In response to this,the Employers’ Working Group seesa need for some form of brokerageto signpost employers to therelevant organisation or source ofinformation they require in eachsituation that arises. The Group hassuggested a web portal would be acost effective way of providing thisis in a way that would be welcomedby employers.

Recommendation 7.15: Advice for employers.

By 2006, DWP, DH and DTI shouldjointly consider how best toestablish a single informationpoint for employers This willprovide basic information on allaspects of recruiting and retainingdisabled people and signpostorganisations offering furthersupport. Case studies based on

189EMPLOYMENT

successful practice by employers should also be included. The service would be furtherenhanced by a system of badgingparticipating organisations, toensure employers are referred toorganisations providing highquality services.

Government should work withorganisations such as CBI, ACASand FSB to establish the mosteffective way of bringing togetherthe wealth of information andadvice available to employers andhow this should be communicatedto employers.

Links between Jobcentre Plus and employers

Jobcentre Plus has a new approachto engaging employers as customersof their recruitment services. Thisincludes offering specialist advice ondiversity issues including disability.To achieve maximum job placementsfor disadvantaged clients this istargeted on large employers.

Engaging SMEs represents a greaterchallenge. To engage SMEs, theEmployers’ Working Group hassuggested that Jobcentre Plus needsto develop partnerships withorganisations that SMEs are in moreregular contact with. This wouldenable Jobcentre Plus to providesmall businesses with practicaladvice regarding legal obligationsand risks, and to market theassistance that Jobcentre Plus can provide with recruiting disabled

people. Research shows that SMEs’preferred sources of advice includeaccountants, banks and solicitors.

Recommendation 7.16: Jobcentre Plus and employers

Jobcentre Plus should develop, by 2008, ‘reference sales’ productsregarding disability issues for use by SMEs’ preferred commercialadvisers and Business Links. DWP to lead.

There is currently a lack of effectiveincentives for employers to recruitand retain disabled people

The Employers’ Working Group seesa need for an accreditation or awardthat employers want to have andthat disabled people know identifiesan employer with a commitment to and good record for employingdisabled people.

The “two ticks” disability symbolaims to provide such anaccreditation. The symbol isawarded to employers who arecommitted to offering interviews to all disabled applicants meetingthe minimum criteria for the job.Other commitments are based onhaving procedures in place to recruit and retain disabled people.Feedback from disabled people andemployers shows the symbol is notvery effective. It is not valued andsought after by employers; is basedon procedures rather than outcomesand disabled people are notinfluenced by seeing the symbol on job adverts.


It is recognised that an accreditationthat involves monitoring of disabledemployees will be difficult toimplement – especially as manydisabled people entering work mayno longer consider themselves to bedisabled, other disabled people maynot want to tell their employer.

A good example of an accreditationvalued by business is Investors in People (IiP) – the nationalstandard which sets out a level of good practice for training anddevelopment of people to achievebusiness goals. The employers’working group has recommendedthat accreditation of IiP be linked to companies record on recruiting,retaining and developing disabled employees.

This report supports this asproviding a genuine incentive toemployers. IiP is reviewed everythree years, with the latest reviewdue to be completed shortly.Including specific requirements forcompanies to meet on theiremployment of disabled people aspart of the criteria for beingawarded IiP should be considered atthe next review in 2007. Analternative would be thedevelopment of a good employers’standard – which would allowemployers to demonstrate theirachievements in terms of beinggood employers, of disabled peopleand other groups.

Recommendation 7.17: Investors in people and the disability symbol

• By 2007, subject to resources,DWP should review theeffectiveness of the disabilitysymbol, in consultation with business.

• Between 2005 and 2007, DfESand Investors in People shouldconsider including employmentof disabled people in theiraccreditation criteria andmonitor it through their threeyear review process.

• Between 2005 and 2007, DTIshould consider consultingbusinesses and trades unions onthe potential development of anemployment standard thatencourages employers tointroduce good employmentpractice, including therecruitment, management anddevelopment of disabled people.

Businesses may find furtherincentives to improve theirrecruitment and retention ofdisabled people from a commitmentto publish information on theirrecord, for example as part of theirannual report. This would signal acommitment at board level whichmay be important in engaging staffthroughout the organisation.

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323 Arksey, H, Thornton, P and Williams, J (2002) “Mapping employment focused services fordisabled people”, Department for Work and Pensions, In-house report No 93.

Government can lead the way as an exemplar employer

The upcoming public sector dutyshould be used to further involvelocal authorities and centralgovernment departments in theemployment of disabled people.The public sector duty shouldencourage government to alsobecome exemplar employers ofdisabled people.

Recommendation 7.18: Impact of the public sector duty

Government departments,government agencies and localauthorities, from 2006 onwards as part of their public sector duty, should take the lead indemonstrating, promoting andreporting on best practice in therecruitment and retention ofdisabled people. The Employers’Working Group suggests thatJobcentre Plus could in particularplay a leading role as an exemplar employer.

Box 7.11 Worcestershire County Council

Worcestershire County CouncilSocial Services have establishedEmployment DevelopmentWorkers in some of their learning disability day centres.They develop vocational profileswith individual service users whowant to work and then carry out a job search and match the personto an appropriate job vacancy.

They assist the disabled person throughout the interview andsupport them during the inductionperiod. Job coaching is providedand regular contact is maintainedfor as long as it is needed.Concerns are dealt with quickly to ensure all parties are happy.The Employment DevelopmentWorkers negotiate reasonableadjustments under the DDA andapply for Access to Work funding.For some disabled people theroute to entering the labourmarket is a long and arduousjourney and may take many yearsto achieve. However by buildingthis function into day careprovision, there is effective helpfor people who want to negotiatethe route to employment.

7.7 Building informationnetworksDelivery of employment services ispatchy and fragmented

A “mapping“ study identified nearly 2,500 voluntary sector andlocal authority projects providing6,700 pre-employment services todisabled people in Great Britain.40% of these provided vocationaltraining323. There are two importantissues relating to the multiplicity of service provision.

• Available services may beunknown to individuals, theirfamilies, GPs or Jobcentre Plusadvisers.


• In the majority of cases, theprojects have to piece togetherfunding from a variety of sourcesand have to meet the demands ofthe funders. Continuity of fundingunder these circumstances isalmost never guaranteed.

An additional problem is thatprojects can rarely afford externalevaluation of their services. It is therefore difficult to get acomprehensive review of theeffectiveness of these projects324.Lack of good quality evaluation of outcomes means it is difficult to provide evidence of what works.This impairs the dissemination ofgood practice and prevents policymakers rolling out what works on a wider scale.

The Directgov online programmehas a vision to provide access to local information and allgovernment public services.This would include disabled people.There are also currently plans inplace by the eGovernment Unit anddepartments to investigate currentonline directories available forintegration with Directgov.

Box 7.12: Evidence of good practice – Cheshire County CouncilResource directory of availablesupport for disabled people325

The new resource directory ofavailable support was the result ofco-operative joint work between23 separate organisations in

Cheshire as part of the Joint Investment Plan by the CheshireWelfare to Work Partnership.

The directory pulls togetherinformation of the servicesprovided by a wide range ofcontributors from the voluntarysector, private sector, governmentagencies, local authorities etc. It has been difficult for advocatesand the disabled people to accessthe right information regardingemployment services for disabledpeople in their area and theinformation in this directoryaddresses this gap.

The directory has been arrangedin sections depending on the type of support available, namely:Workstep programme providers,employment services and jobcentres, support available fromCheshire County Council, the voluntary sector, careersservices, information advice andadvocacy services, FE Colleges,health services and boroughcouncil services.

Recommendation 7.19: Online directory of services

By 2008, DWP to lead, with DfESand DH, to set up a joint initiativebetween the public, private andvoluntary sector with an aim tocreate a national online directoryof service providers by area, and

324 There have been some reviews of projects funded by European Union initiatives, such as HORIZON.

325 Source: http://www.cheshire.gov.uk/SOCIAL/adults/resource_dir/resource_dir.htm.

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inform disabled people of the services offered to them. Linkswith Directgov and current onlinedirectories must be considered.This would be a separate initiativeto complement the independentemployers’ advice source inrecommendation 7.15.

The directory should becomplemented with a nationalhelpline, as joint initiativebetween DH and DWP, to provideinformation to disabled peopleand their carers and relatives.

Sharing information throughlocal partnerships

Effective information sharingthrough local partnerships may alsohelp achieve positive employmentoutcomes. This is demonstrated byan innovative scheme, operated bythe employment charity Tomorrow’sPeople, which helps disabled peopleto progress into work. The schemeinvolves placing employmentadvisors at GPs’ surgeries to providepatients with a “one-stop-shop” forhealth and welfare advice in a bid tohelp sick and disabled people backto work. The employment adviseris present at the surgery one day

a week and sees an average of fivepatients. The scheme has beena great success producing returns

for both patients and doctors. From nearly 200 patients who haveseen the adviser, 100% havereturned to employment or are backin education or training. On average

75% are still in work 12 months on.In addition, the scheme has helpedsave an average of five consultationsper patient, saving the surgerythousands of pounds.

Box 7.13: The Northern Way

The Northern Way is part of theODPM's 'Creating SustainableCommunities' project and is being led by the three NorthernRegional Development Agencies,covering the north’s eight cityregions. By collaborating withgovernment and regionalstakeholders, they have developeda long-term vision for helping the economy of the whole of the north to grow. The overall aim is to ‘establish the north ofEngland as an area of exceptionalopportunity’326 through improvingthe local economy and quality of life.

One of their aims is to bring morepeople into work to increaseoutput in the north (and close theoutput gap with the south). Theywill help companies create jobs(e.g. by improving transport links).

Given the high numbers on IB inthe north (840,000 people), theyhave set a target of moving100,000 from IB into work by2011. To do this they will workwith local RDAs, Jobcentre Plusand Regional Skills Partnerships.

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326 Source ‘The Northern Way: First Growth Strategy Report’ (2004).


Recommendation 7.20: Employment advice

DH and DWP – working with other government departments –should explore and test optionsfor placing vocational advisers in healthcare and other settings. Testing from 2006, rollout from 2008.

The overall approach wouldbe a multi-agency model ofsupport and advice withinhealthcare settings and possiblyother settings where there aredisabled people without work or at risk of losing their job (e.g. children’s centres, healthyliving centres or other non-stigmatising community-basedsettings). These initiatives wouldtest the economic, health andsocial benefits of vocational advice as a way of enabling people toachieve their full potential.

This would imply:

• providing a voluntary andconfidential service, accessibleby self-referral or referral byhealth professionals;

• focusing on providing adviceand support with an aim torefer and move clients towardsvocational opportunities (e.g.specialist or mainstream support services, supported oropen employment) in thecommunity; and

• developing a common evaluation framework andshared outcome measures.

A more comprehensive roll-out in2007 and the development ofnational standards will take placeafter identifying what kind ofadvice works, for whom and why.

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This report aims to provide a basisfor policies and services to improvethe life chances of disabled people.It sets out a programme of sustainedaction towards attainment of the

vision and goals over the next 20 years. This requires a clearcommitment to effective policy andsupport for disabled people, withinwhich strategy, leadership, standards

TOWARDS IMPROVED DELIVERY

Summary

This chapter assesses what needs to be done to ensure effective delivery of the programme of reform set out in previous chapters. Particular attention is paid to the application of the public servicereform agenda to services provided to disabled people.

There are six recommendations:

• The strategy for improving the life chances of disabled people shouldbe developed fully and timetabled with milestones, communicatedwidely, and aimed at steady progressive reform to 2025.

• Provision for disabled people should be reviewed and a new mix ofmainstream, specialist and integrated provision derived from thestrategy described in Chapter 3.

• More coherent and explicit standards should be developed bringinglegislation and other rights into a coherent framework.

• The review of provision should address ways of encouraging effectivedelivery of services that meet the needs of disabled people.

• A strong focus is required within government to make sure that priorityis given to disability issues, and to provide oversight of a process toreform delivery in line with the public service reform agenda.

• New arrangements should be established for securing participation ofdisabled people in policy design and delivery at all levels.

Chaper 8: Towards Improved Delivery


and involvement of disabled peoplelead through into reformedprovision and systems of delivery.After an introduction (8.1), thechapter considers:

• the characteristics of an effectivedelivery system, and how wellcurrent arrangements providewhat is needed (8.2);

• proposals for change (8.3);

• providing leadership (8.4);

• involving disabled people (8.5); and

• anticipating risks (8.6).

8.1 IntroductionDespite much improvement inrecent years, provision for disabledpeople remains characterised by:

• multiple agencies and services;

• a lack of clarity in resourceallocation in relation to needs;

• a focus on processes rather thanoutcomes;

• invalid assumptions about theabilities of disabled people to be active citizens;

• delays in receiving provision;

• misperceptions and lowexpectations about what disabled people can do;

• low levels of awareness of the DDA;

• different assessment procedures;

• poor co-ordination;

• insufficient access to high-qualityadvice, information and advocacy; and

• limited accountability andmanagement of performance.

There is a lack of pace and directionfor reform, and little evidence thatdisabled people have yet benefitedfrom the public service reformagenda. Without further change,current arrangements withingovernment are incapable ofaddressing these constraints.

8.2 Characteristics of aneffective delivery system fordisability and an assessment of the current arrangementsA sound framework for deliveringthe recommendations in this reportwill derive from the vision, aims, andgoals and ought to contain:

• an effective strategy: a plannedway forward with targets andmilestones;

• coherent provision: programmes,services, benefits, individualbudgets and other supportdesigned to deliver the strategy;

• clear standards: rules, codes ofpractice, legislation and guidance,and inspection;

• accountable leadership: fromGovernment; and

197

• inclusive communication andparticipation: ensuring fullinvolvement of disabled peopleand public awareness of the issues.

An effective strategy: a planned way forward with targets and milestones

Assessment of current arrangements

There is no explicit national strategyfor improving the life chances ofdisabled people. Previous chaptersreveal many real problems.

• A lack of shared understandingand accountability has led toinadequate action to removebarriers to disabled people’sinclusion. This is reflected in major policy initiatives that fail to address how disabled peoplecan best participate.

• A fragmented approach, withservices being provided bydifferent organisations in waysthat do not co-ordinate tomaximise the life chances fordisabled people.

• Failure to include disabled peopleeffectively in the workforce,resulting in a loss to society of thecontribution that disabled peoplecould make; and too many peopleout of work, with high costs beingimposed on the benefits system.

• Outdated attitudes that makeinvalid assumptions and act toexclude disabled people, forexample, by presuming thatpeople with learning difficultiescannot be parents.

• A lack of focus upon outcomesand a continuing reliance onprocess leading to unnecessarybureaucracy.

Characteristics of an effective strategy

The strategy set out in Chapter 3and expanded in Chapters 4–7 is thebedrock of an effective deliverysystem. If it is to lead to effectivedelivery, the strategy needs to:

• set out the territory for whichleadership, planning, resourcesand dedicated services arerequired;

• give focus and structure to asustained reform process;

• give disabled people a clear ideaof their rights and what supportthey can and should expect;

• facilitate policies and programmesthat relate to the “whole person”;

• drive out the diseconomies whichresult from silo working; and

• highlight disability within policyon diversity and mainstreamprogrammes.

The strategy set by this project willneed to evolve over time, setting anongoing series of objectives andmilestones that will ensure effectiveand sustained delivery. This willenable central and local policymakers to plan, incentivise andmeasure progress towards thestrategy, and the vision, aims and



policy goals behind it. Flexibility will be needed to head offemerging risks (see section 8.6), andbuild upon new economic, socialand political opportunities.

Coherent provision: programmes,services, benefits, individualbudgets and other supportdesigned to deliver the strategy


There are two fundamentalproblems deriving from the lack of an overall strategy and policyframework for improving the lifechances of disabled people.

• A large number of differentservices, payments, tax credits, and support schemes for disabledpeople, designed and delivered as by-products of other policiesand programmes, with little

coherence. This is not a person-centred system.

• No carefully judged balancebetween mainstream, specialist andintegrated provision. Mainstreamprogrammes frequently fail to takethe needs of disabled people intoaccount. Specialist programmesoften only exist because of thatfailure, and consequently aredesigned narrowly – and as thechart below reveals, are deliveredby a variety of Departments withdifferent and unrelated definitionsof client, rules, and assessmentarrangements. Integratedprogrammes aimed at meeting theneeds of disabled people in theround, or when they makesignificant life transitions, arerarely contemplated, let aloneproposed and tested for costeffectiveness and conformity withpublic service reform.

HMT

DfESTrainingSkillsQualification

DHHealthcare

DWPDLA

DWPILFs

DWPIB

DWPAtW

DWPWork&Rehab

NDDPJob Broking

DHInstitutionalCare

DHSocialCareServices

DHDirectPayments

ODPMHousing

DCMSLeisureSport

DoTParkingMobility

LSC PCTs DCS ILF JC+ NDDP LA GPs PA Case Manager

Individual Disabled Person

Figure 8.1 Major government structures providing disability service arrangements

199

Box 8.1: Case study on lack of incentives for joint-working

Helping IB clients back to work is a major government priority forJobcentre Plus, which it carries outthrough interviews and supportedjob search. But success dependscritically upon addressing people’shealth needs, the ability of clientsto live independently in thecommunity, and basic transport.Yet policy and deliveryarrangements on health and socialcare support, and on transportissues, are determined separatelyfrom policy towards employment-related support, which leads toseparate programmes delivered in isolation from Jobcentre Plusservices, suggesting potential for savings as well as benefits to disabled people.

Characteristics of effective provision

Well designed and effectiveprovision for disabled people willconform with the principles ofpublic service reform.

• Increased voice, choice,personalised services and localaccountability.

• High standards of service deliverywith strong leadership andincentives that reinforce deliveryon the vision.

• Clear roles for all partnersnational and local.

Disabled individuals, especially thoseaccessing multiple services, want the support and services which they need to be drawn together –whether about health, employment,care needs, housing, access toamenities, or parenting. Integratedprogrammes will not always be acost-effective response, and it is notalways practical for all support tocome through a single gateway. But wherever possible, and withoutbreaching confidentiality, thereshould be some consolidation ofseparate assessment processes,gateways, organisations, case/caremanagers and application formsthat disabled people have to dealwith simply on account of theirimpairment or ill health. Not allpeople will have the same needs,but should be able to select from a common menu.

With this in mind, effective provisionwill be characterised by conformitywith the three key policy principlesdiscussed in Chapter 3 – inclusive,effective and informed. For theseprinciples to be delivered,government will need to:

Design inclusive systems –coherent provision will involve:

• systems including disabled people through active removal of attitudinal, physical and social barriers;

• ensuring that disabled people’sneeds are met throughmainstream provision whereverpossible, with full consideration



of the barriers to be removed,requirements for accessibility, and additional/specialist supportwhere required;

• introducing new integratedprogrammes;

• less bureaucratic services withshort lines of accountability, fewintermediaries, and value added at each level;

• contestability, carefully designedto secure challenge, but with thenecessary collaboration for bestvalue to customers; and

• sharing of best practice and waysof achieving better outcomes.

Ensure high performance –coherent provision will involve:

• strong leadership and a tightperformance regime with cleargoals, standards, targets andmonitoring to ensure sufficientconsistency between individuals,over time and between localitiesand services in line with therecommendations;

• provision based on evidence ofwhat works and evaluated pilotswhere necessary;

• ensuring the quality of specialistprovision which personalisesservices to the individual withcareful consideration of theappropriate methods betweencash, services and programmes;

• joint working between providersbecoming the norm, not theexception, in addressing andovercoming conflicting policies;

• staff skilled developed andmotivated to deliver theoutcomes, with full support from key stakeholders and aninformed public;

• local empowerment for flexiblemodes of delivery for improvedoutcomes, with the ability toconnect resources to meetindividual needs;

• an emphasis on personalisedresponses which enable choice andempowerment; and

• avoiding differences in approachwhich prevent successfultransitions.

Empower people –coherent provision will involve:

• disabled people (and theirfamilies) systematically involved atan individual and policy-makinglevel – at local authority, regionaland national levels – to informhow policy and standards aredesigned and delivered – and indevelopment of their ownorganisations such as Centres forIndependent Living;

• addressing access needs, includingindependent advocacy, providingsupport (for example payment of fees and expenses) and a

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framework for disabled peopleand their families to be involvedensuring that they are empoweredto have their voice heard and thattheir voice carries weight; and

• support in the form that peoplewant and need, with avenues forredress when things go wrong.

Clear standards: rules, codes ofpractice, legislation, and inspection

Assessment of the currentarrangements

There is currently a fragmentedapproach, with many unrelatedstandards.

• Overarching this whole agendaare the Disability DiscriminationAct and the new DisabilityDiscrimination Bill, and these willbe underpinned by codes ofpractice published by the DisabilityRights Commission. But this is noteasily related to other standards.

• The standards – and thereforetraining – of many professionalsare insufficiently broad toincorporate knowledge of related disciplines to help andrefer people and facilitate person-centred support.

• In housing, Lifetime Homesstandards are not sufficientlyadopted.

• NSFs for Long term Conditions,Mental Health, Older People andChildren have considerablepotential and set out national

standards in each of these areas,but doubts remain aboutenforceability and their ability to make a difference.

• There is no NSF for disabledpeople, nor widely acceptedstandards for key topics such as Independent Living and fordisability equality training. The “two ticks” symbol foremployers covers only recruitment.

• Information about theperformance of services is notgenerally made available to thepeople who use those services.

Overall, the various sets of standards do not connect and relateto each other, making it difficult to determine the overall quality of the support that disabled people receive.

Box 8.2: Standards forindependent advocacy

Standards in this growth area area mix of legal and voluntary,aspirational and minimum. Theyinclude the Advocacy Charter, theAdvocacy Safeguards Agency inScotland, DH Standards forchildren’s advocacy services, theComplaints Advocacy Servicestandards, standards for mentalhealth services users, and KingsFund standards for health andsocial care for BME communities.



Characteristics of effective standards

Effective standards need to:

• be meaningful and understood;

• guarantee minimum quality of provision;

• challenge organisationalperformance;

• be practical and enforceable; and

• leave room for local flexibility.

The basic ingredients of the currentsystem will need to remain in place,but will need to have a clearer senseof purpose within the overallframework for delivering improvedservices to disabled people.

• Legislation should provide theessential framework of civil rights.

• Professional standards forindividuals and performancestandards for delivery agenciesshould ensure that all disabledpeople are clear about the helpthey can expect.

• Employment standards should be a driver of improvements inrecruitment and retention,adaptations and workplaceattitudes.

• Accessibility standards should becomprehensive across all barriers

• Information about whetherstandards are achieved should bemade available to disabled people.

There should be visible coherenceacross standards, with consistentdefinitions across age groups, withcareful inspection of performanceagainst them and audits of servicedelivery. Future legislativeopportunities should be consideredas part of an overall programme ofdisability reform, with civil rights asa component of effective supportfor disabled people.

Accountable leadership: from government


There is no central focus currentlyproviding effective leadership ondisability issues.

The role of the Minister for DisabledPeople is generally associated withresponsibilities within DWP aroundlegislation and benefits. And manydisability issues are managed assubsets of other departmentalbusiness, so that budgets and PSAtargets for disability issues aresought and agreed within the SRprocess with limited coherence orrelationship either to each other, or with any relationship to anoverall policy framework fordisability. This makes subsequentdownstream joining up the onlypossible response, which may wellbe hard and expensive to achieve.

There are inter-departmental forumscapable of promoting a disabilityagenda, but these are reactive, meetinfrequently, and do not commandaction or commit resources.

203TOWARDS IMPROVED DELIVERY

Characteristics of effective leadership

Achieving the strategy and securingpublic service reform will require astrong focus in government to leadand manage policy towards disabledpeople and to oversee its delivery.Such a focus would be required to:

• develop, implement, review andimprove the strategy;

• promote the vision and prioritystatus for disability issues;

• draw government departmentstogether at both ministerial andofficial levels, and achievecoherence with devolvedadministrations;

• maintain pressure for changeacross government, and ensureaction to meet the goals andmilestones;

• facilitate initiatives, consider thedevelopment of future targets,spending plans and bids forresources for disability throughthe Spending Review process;

• support alignment of main-stream and disability-specificprogrammes;

• secure research, and collect anddisseminate data on disability;

• include disabled people andsecure effective communicationwith and information flow todisabled people, supporting andempowering them to takeresponsibilities and ownership;

• have a complementaryrelationship with the governmentmachinery for diversity andoversight of the Commission of Equality and Human Rightsespecially throughout the five-yearperiod of special treatment fordisability, and before any reviewof the current discriminationlegislation framework;

• be owned by departments not in rivalry with them, and beresourced for the long haulsubject to continuing todemonstrate added value;

• bring together the differentstakeholders needed to secure progress;

• have a degree of distinctiveness,charisma and authority to securepositive and popular impact withthe media and public; and

• have the power to challengediseconomies resulting fromresponsibilities divided between departments.

Box 8.3: Leadership on disability,leadership on diversity

Over the next few years there willbe enhanced attention to diversityand human rights issues, with theadvent of the CEHR and thepossibility of a review of thecurrent discrimination legislationframework. There will beopportunities for progress ondisability to be assisted throughdiversity-orientated programmes


(for example in seeking commitment from employers) andsimilarly for progress on diversityto be driven from the base ofdisability programmes. It will beimportant for there to be effectiverelations between the centralfocus in government for disabilityand that for diversity issues toreview and take advantage ofsuch opportunities.

Inclusive communication andparticipation: ensuring fullinvolvement of disabled people and public awareness of the issues


Disability groups and individuals are not well represented withinpolicy development, despite devices specific to particular policyareas such as DPTAC for transportand DEAC for employment. Relationsbetween disabled people’sorganisations and government, whileimproving, have been tentative andpartial. Differences of opinion persistbetween organisations of and fordisabled people, and for differentimpairments, dissipating energiesand impact. There is not yet a strongtrust between government anddisability organisations, nor betweenmany of the disability organisations.And there are often misunder-standings and disagreements aboutwhat is meant by disability.

Characteristics of an effective system

• Well-developed local and national capacity is needed in disabled people’s organisationsand formal links and agreementswith key organisations including local authorities and centralgovernment.

• National minimum standards tomake sure disabled people are not out of pocket or otherwisepenalised for participating.

• Disabled people’s organisationsbecome part of the contractingculture involved in bothmonitoring and delivering key services.

• Disabled people can choose thelevel at which they arecomfortable to participate.

• “Nothing about us without us” is a guiding principle in policy and service delivery.

• Disabled people are not fearful of the consequences of getting involved.

• People’s access needs areaddressed as a matter of routine.

• Independent advocacy is availableto support disabled people’sparticipation.

• The public sector duty to promoteequality of opportunity leads to a process of front-endassessment of policies thatinvolves disabled people.


8.3 Proposals for Change This chapter makes sixrecommendations that togetherprovide the components of an improved delivery system fordisability issues:

• The strategy for improving thelife chances of disabled peopleshould be fully developed andtimetabled with milestones,communicated widely, andaimed at steady progressivereform to 2025.

• Provision for disabled peopleshould be reviewed and a newmix of mainstream, specialistand integrated provision derivedfrom the strategy described inChapter three.

• More coherent and explicitstandards should be developedbringing legislation and other rights into a coherentframework.

• The review of provision shouldaddress ways of incentivisingeffective delivery of serviceswhich meet the needs ofdisabled people.

• A strong focus is required withingovernment to ensure thatpriority is given to disabilityissues, and to provide oversightof a process to reform deliveryin line with the public servicereform agenda.

• New arrangements should be established for securingparticipation of disabled peoplein policy design and delivery atall levels.

This section examines ways ofmaking delivery work moreeffectively, and sets out the reasoning behind ourrecommendations. The next section looks at securing a focus for effective leadership.

Recommendation 8.1: An evolving strategy

The strategy for improving the lifechances of disabled people shouldbe fully developed and timetabledwith milestones, communicatedwidely, and aimed at steadyprogressive reform to 2025.

Government departments to lead,supported by the ODI. Initialactivity in 2006, then ongoing.

This report’s proposed strategy is described in Chapter 3 andexpanded in Chapters 4 to 7. For thepurposes of sustained delivery thestrategy will need to be kept “live”and up to date, communicatedeffectively to all players to motivateand drive progress over time,expressed sufficiently clearly andexplicitly to enable disability issuesto be reviewed across the piece, andwith regular reporting on progressto the Prime Minister.


Recommendation 8.2: A review of provision

Provision for disabled peopleshould be reviewed and a new mix of mainstream, specialist and integrated provision derivedfrom the strategy described inChapter 3.


The existence of a single strategypermits a thorough review ofactivity that supports the strategy. A robust review process, carefullyscheduled to address the full rangeof opportunities – and which looks openly at all forms ofprovision against all levels of need –is required. Policy makers need tomaximise cost effectiveness bytargeting as broad a group ofdisabled people as possible within a range from complex to simpleneeds, so that all those who needsupport and can benefit from it areincluded. Specialist programmes for disabled people, together with appropriate mainstreamprogrammes, need to be carefullyreviewed against the criteriaoutlined in this chapter. The SEU will shortly be looking at how bestto improve delivery of mainstreamservices to disadvantaged adults,including a specific focus uponpeople with disabilities and chronichealth problems, which will providevaluable input to the review workrecommended here.

The review will provide theopportunity to consider completelynew forms of integrated, person-centred provision that will:

• be in the interests of public servicereform and cost effectiveness;

• better meet the transition needsidentified, whether fromchildhood to adulthood, betweenservices, into independent living,or into retirement; and

• support both individuals and families.

It will need to identify best ways of structuring planning andestablishing such person-centredprovision, including who delivers,how to pilot, staff training andcompetencies, incentive regimes,and inspection.

The existence of a policy frameworkalso permits a review of priorities.For example:

• movement of resources out of institutional and segregated care, day-care and repeat special courses into mainstreamprogrammes;

• disabled people working inpartnership with statutoryorganisations to shape services andcontracting processes that ensuregood participation is widely andappropriately practiced;

• provision of independentadvocacy, key worker roles andservice navigation/brokerage;


• extension of rights tocommunication support; and

• employing more occupationaltherapists and physiotherapists.

Integrated person-centred provisionmay be achieved in different waysdepending on the scale, degree ofpersonalisation and permanence ofchange required, and recognisingthe different albeit overlappingneeds of different service users. The options for moving towards“single front doors” for disabledpeople are, in ascending order ofrevision and change:

• departments and local deliveryagencies would simply make surethat they have a basic knowledgeand awareness of each other’sactivities in order to help clients to navigate the different systems;

• departments might bid to HMT for financial resources for theirown programmes as now, butjointly develop (with their deliveryagencies) common principles andguidance for pooling or sharing offunds and for harmonised deliveryby the different delivery agencies;

• departments might act as abovebut also cream off a percentage to create a top-up fund atnational or regional level to meetadditional and unexpected needs;

• departments collude to make acommon bid for one budget heldcentrally, but which is thenallocated to delivery agencies

partly in relation to past needs but partly revised for a betterbalance; and

• the central budget is used to funda single programme run by oneagency for one department, with appropriate influence fromall departments.

Recommendation 8.3: Standards

More coherent and explicitstandards should be developedbringing legislation and otherrights into a coherent framework.


This report proposes that thereshould be reviews of existingstandards and the way in which they fit together. This will includestandards for workforce planning,professional training, competence,and qualifications for serviceproviders and other professionalsworking in support of or otherwiseimpacting on the lives of disabledpeople. Effective means forinspection and assessment against these standards should be developed. These reviews shouldtake place as part of an ongoingprocess of improving the quality of services.

There may be opportunities to improve the consistency ofdefinitions of disability for exampleto ensure equity at tribunals, and to


reconcile definitions within socialcare legislation with those in theDDA. The Public Sector Duty willmake a vital contribution to theintroduction of a clearer frameworkof standards and expectations.Beyond the current Disability Billthere may be an opportunity toreview the current discriminationlegislation framework, and forfurther legislation around welfarereform. Any further legislationshould be considered against theoverall strategy and in particular the coherence of standards fordisability across the board.

Recommendation 8.4: Incentives for effective delivery

The review of provision shouldaddress ways of incentivisingeffective delivery of services whichmeet the needs of disabledpeople.

Government Departments to lead,supported by the ODI. Initialactivity in 2006, then ongoing.

Earlier chapters have addressed the on-the-ground delivery ofservices for disabled people.Local authorities will frequently be at the centre of local deliveryarrangements. The review ofprovision needs to look carefully at the appropriate mechanisms for ensuring effective delivery of services and support by localauthorities and by other deliveryagents. There are a number of options.

• Investment:Significant additional resources for disability will not be availablein the short term. But a case for additional resources whereappropriate should be built forthe longer term, starting inSpending Review 2006.

• Incentives:This report recommends that workshould be carried out to bringtogether the evidence base aboutdisabled people’s outcomes into a small number of key outcomeswhich can be incorporated intothe national incentive structure.These incentives could be in theform of a refined DWP PSA targetor through existing departmentalPSA targets when these are re-negotiated in Spending Review 2006.

However, there is a limit to whatnational targets can and shouldachieve. The primary focus should be on locally generated targetsbased around existing performancemeasures. So, for example, localdisability targets could be devisedfor key Best Value PerformanceIndicators, on which all authoritieswould be required to report in theirannual Performance Plans.

Furthermore, the increasingemphasis on user-focus and diversityin the national CPA framework iswelcomed as a way of ensuring thatcouncils take seriously the need toprovide appropriately-tailoredservices to all members of theircommunities. Local PSA targets with


local performance frameworks towhich service users contribute willbe increasingly important. The targets set will need to bestretching, with full localcommitment secured. Over timelocal organisations of disabledpeople should become involved in target setting and inspection,becoming resourced and skilled to do so. For all local targets, jointperformance measures should beconsidered because of the potentialof these to deliver more effectivejoint working.

There will need to be new ways ofdrawing support together at locallevel, and for generating proposalsfor joint arrangements to operate atregional and national levels. LocalStrategic Partnerships (LSPs) will be a powerful means of joining up localservice deliverers and encouraginginnovative approaches to newperson centred provision, involvingdisabled people in the design. Giventheir rationalised funding streamsand extra freedoms and flexibilities,Local Area Agreements (LAAs) mayoffer added scope in this respect,initially in the 21 pilot areas andthen in a potential wider roll outfrom 2006/7. And there needs to becloser day-to-day working betweenpartners such as PCTs and localauthorities. Workforce planning isalso needed to make sure that therequired skills are in place insufficient quantity. And there will be an increasingly important role for Government Offices.

Standards and duties:Recommendation 8.3 argued for areview of standards. The proposedpublic sector duty will also need tobe built into inspection regimes, andwill provide a basis to tightenexpectations and to review progress.The Disability Rights Commission willproduce guidance on evidencegathering, involvement of disabledpeople and how to assess impact.

8.4 Providing LeadershipA central theme of this chapter is that strong leadership will beneeded to make a real difference to the lives of disabled people.

Recommendation 8.5:Government leadership of reform

A strong focus is required within government to ensure that priority is given to disability issues, and to provide oversight of a process to reform delivery in line with the public servicereform agenda.


Stronger leadership – meeting thecriteria set out in “characteristics ofeffective leadership” in section 8.2 –might, in principle, be secured by changed procedures andincentives, new mechanisms, or structural change.

• Procedures and incentivesThese could include ideas such asan action plan based on the


strategy, single Spending Reviewbids, PSA targets, requirements ondepartments and delivery agenciesto report on progress, points andreward systems on front-line staff.However it is difficult to envisagethese being activated successfullywithin existing departmentalarrangements and responsibilitieswithout imposing an unacceptablyhigh additional level ofcoordination and oversight fromcentral departments.

• Temporary MechanismsThere is some attraction inregarding the challenge as a one-off step change bestaddressed by introducing newthinking and energy from disabledpeople themselves and the privatesector working in collaborationwith government officials. Options might include a task force and a ‘tsar’. Both of thesemechanisms have been usedelsewhere in government andabroad with varying success.

This report sees few attractions toeither of these approaches as theprimary way forward. The task islong term and will need sustainedattention, and temporaryarrangements cannot bring aboutthe necessary realignment ofpolicy design and deliverymanagement. However the reportrecommends that in recognition ofthe especially challenging natureof the issue, a Task Force forIndependent Living be established,consisting of ministers and officialsfrom central and local government

working with organisations ofdisabled people to developimaginative new solutions acrossthe health /social care/employment/housing interfaces.The Task Force would help to develop thinking onindependent living and onindividualised budgets.

• Structural ChangeThere are a number of optionsother than leavings things as theyare. These include increasing thepowers of the DRC, creatingformal bilateral links betweengovernment departments, orcreating a new Diversity Unit. This report has concluded that a structural step change is anecessary precondition for the degree of sustained crossgovernment working implicit in the strategy.

This report therefore sees the mostpromising way forward as being tocreate a new Office for DisabilityIssues (ODI) which would supportimproved arrangements for securingcollaboration between ministers andofficials, and for involvement ofdisabled people themselves. It wouldalso build strongly upon thefoundations of existingdepartmental responsibilities.

The ODI will be a new slim strategicunit, with few executive functionsand with an essentially coordinatingrole, providing direct supportthrough its chief officer to theMinister for Disabled People. It would provide a focus within

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government for disability as adiscrete subject and be the means by which departments collectivelydrive forward the strategy. The ODIwill be “owned” by the leadingdepartments (DH, DWP, DfES, ODPMand DfT ) who would between themplan and steer its work programmeand ensure that this fits well withthe Government’s wider equalityagenda. The Office will cover peopleof all ages, support the Minister for Disabled People in a full cross-government role, and provide a broader context for relevantgovernment departments to developpolicy. The dynamic focus createdwill enable departments to taketheir emerging thinking into acollective process within the ODI and to pursue coordinated policydevelopment as well as planningand monitoring changes to thedelivery system for disability, withdirect involvement from stakeholdergroups. They will thus be able toassure ministers that policies arecompatible and coherent. Using theODI should become a natural way of doing business.

Individual departments will retainresponsibilities for policy andprogrammes for disabled people.Any new programmes developedunder the auspices of the ODI would generally be delivered by departments and not by the ODI.Departments would be responsiblefor preparing annual report on thestrategy, which could potentially becombined with reports on the publicsector duty. Figure 8.2 is an

illustrative example of how theOffice for Disability Issues, onceoperational, could act acrossgovernment on policy design andoversight of delivery. This illustrationsuggests a potential outline role of the Office, rather than a full or final description.

There is merit in starting with arestricted range of functions andstaffing, allowing departmentscollectively, following appropriateconsultation with disabled peopleand other stakeholders, to establishthe remit of the ODI before buildingup to “full capacity”. A stagedapproach to establishing the ODI is set out in Chapter 9 of this report.Government will need to consider if any of the DWP’s current functionsin relation to disability (civil rights,analysis, targets, legislation,oversight of the DRC and disabilitybenefits policy) should transfer to the ODI in due course.

The ODI should be established as a discrete cross-government unitwithin the DWP group. But giventhe crucial links into the work ofother departments the status of theOffice should be kept under reviewby ministers, in the light of itscontribution and the success of thestrategy it is tasked withcoordinating. One key role will befor the ODI to act as an exemplarfor the rest of government in theway in which it does business, byensuring that its activities are fullyinclusive and accessible.



A ministerial cross governmentgroup on disability should beestablished to lead and sustain thereform process and in particular toensure that collective responsibilitytranslates into shared commitmentof effort and resources to ensurethat all Government Departmentsare accountable for the success ofthe change process.

A cross-government group of seniorofficials should be established withthe task of establishing the policyframework and driving throughchanges to the delivery system. Itshould have particular responsibilityfor assembling the resourcesrequired to complete theestablishment of the ODI, and acting after that as the “board of

PM/HMT

SoS SoS SoS SoS SoS SoS

Policy Development

Ministerfor Disabled People

Overview of Service Delivery

DfESChildren’sservicesTrainingSkills

ODPMHousing andHousingSupport

HealthSocial CarePublic Health

DWPEmploymentand security

Office forDisability Issues

DCMSLeisureSport

DfTTransport

DFG

SupportingPeople

Children’sServices

Training andSkills

LSC

SocialCare

Healthcare

DLA IB

IndividualPark of A2W

ILFs

Disabled Person’sPersonal SupportPackage

LAs andDCS

EmploymentProgrammes

JobcentrePlus

Figure 8.2 Illustrative outline of how the Office for DisabilityIssues might work across Government

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management” for the ODI. It willtake ownership of the strategy,identify what pace of reform ispossible within available resources,set key milestones, and adviseministers on the appropriate buildup of functions for the ODI.

This report does not recommendthat any of these disability specificarrangements be combined withother diversity responsibilities. There is a very significant agendahere to pursue, and existingarrangements will ensure thatdisability develops appropriately as part of the wider diversity andequality agenda, including thedevelopment of the CEHR.

Box 8.4: A comparison with New Zealand and South Africa

Both New Zealand and SouthAfrica have world leadingarrangements that are stronglywelcomed by disabled people andeffectively recognise the cross-cutting nature of the problem andits solution. They have eachdeveloped a social model basednational strategy jointly withdisabled people’s organisationsthat applies across government.Both countries also have a smallcentral unit dedicated tosupporting all governmentdepartments to implement thestrategy and monitor progress.The strategy is given clout eitherthough legislation as in NewZealand, or placement in the verycentre of government as in SouthAfrica. In both countries there is

active championing by senior ministers. The emphases ongovernment wide responsibility,partnership with disabled people,monitoring and active follow-upare particularly important lessons.

The Scottish Executive, the NationalAssembly for Wales and theNorthern Ireland Office should beinvited to consider to what extent it would be desirable andappropriate for them to join in with these new arrangements, or set up partnership arrangements, in order to share best practice andmaximise consistency across the UK.

8.5 Communication andInvolving Disabled people

Recommendation 8.6: Particpation

New arrangements should beestablished for securingparticipation of disabled people in policy design and delivery at all levels.


This report has highlighted theimportance of involving disabledpeople and their representativeorganisations in policy design anddelivery. The criteria for reformshould, if properly applied, makesure that disabled people contributeat both national and local level topolicy development and the deliveryof all provision affecting them.



The public sector duty will require a significant increase in theinvolvement of disabled peoplewithin key public sector bodies.

Box 8.5: The details matter – and unless disabled people areinvolved, there can be unintendednegative consequences.

One example is the installation of road humps that have beenshown to be an inexpensive way to increase children’s safety. Road humps have been put in with good intentions. Howeverthey cause some disabled people(and those with temporary injury)extreme pain stopping themaccessing medical treatment,working, visiting friends andfamily. In Harlow a disabled personwas unable to visit their dyingparent to say goodbye owing toroad humps. There are other roadcalming measures that can be used in most circumstances thatwill allow these disabled people to access their environment andparticipate in society.

User involvement protocols shouldbe drawn up and implemented at all levels. And this report alsorecommends the establishment of a National Forum for Organisationsof Disabled People, chaired by theMinister, through which disabledpeople can meet and contribute topolicy development. This wouldprovide a direct signal to disabledpeople that their contribution isessential to delivering the newstrategy, would overcome a degree

of current uncertainty aboutinclusion of disabled people in policydevelopment, and would provide anexample for similar arrangementsassociated with delivery of services.There will always be a risk that theorganisations wish to make fasterprogress than proves to be possible.But it would formalise currenttentative arrangements and bring in valuable input.

There must be a sustained effort to build up the capacity oforganisations representing disabledpeople and their ability to worktogether and with other partners.Government contracts have thepotential to assist this process.

There will need to be a strongerlong term programme for handlingcultural change and the media, and a public dialogue aboutbuilding a society that includesdisabled people, similarly to changes in attitudes secured by feminist and gay pride movements.

8.6 Anticipating what mightchangeAn important aspect of planning foreffective delivery is to review wherenew developments might affectdelivery of the strategy, whetherpositively or negatively. There are a number of possibilities, including:

• progress in medical technologyand genetics;

• changing household and familystructures;

215

• changes to rules on humanfertilisation;

• influence of celebrity role models;

• severe increase in obesity andphysical inactivity;

• increased complexity ofimpairments;

• landmark legal judgements;

• economic fluctuations and recession;

• immigration;

• changes to law on euthanasia; or

• workforce crises in health, socialcare or employment.

The Office for Disability Issues will need to coordinate systematicanalysis of risks and opportunities,with departments leading workrelevant to their responsibilities,retaining research capacity andfactoring findings into reviews of performance against the strategy and amending the strategyas necessary.

The ODI might also usefullyestablish, possibly through a longduration contract with one or moreHE institutions, a capacity forintelligence, information andevidence collection and analysis, andfor information and data sharingaround sound disability equality

practice, costs and benefits of policyoptions, and to mitigate the risks tothe strategy from technological,social, medical and legaldevelopments.


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9.1 Immediate impactThe publication of this reportsignifies that:

• the Government has accepted therecommendations, and all directlyconcerned ministers have signedup to the relevant proposals,conclusions and an effective

ongoing process of reform overthe coming months and years;

• Ministers and officials haveaccepted the remit set out for theestablishment of the Office forDisability Issues. The Office’s termsof reference will be developed inconjunction with all government

IMPLEMENTATION

Summary

All government departments will be responsible for driving forward thestrategy and the practical measures identified in this report – all of whichhave been accepted by the Government. The Office for Disability Issueswill help to coordinate policy across government.

This chapter proposes early action to move forward on therecommendations by ensuring that all parties know what is expected of them by when, and that there is a positive climate and context forreforms to take root. Effective implementation requires five elements to be in place:

• immediate impact;

• a clear and understood challenge;

• clarity of roles;

• achieving and sustaining momentum; and

• resources lined up.

Each of these is examined in turn, concentrating on immediate action inthe early months but recognising also the need to sustain focus on reformafter that.

Chaper 9: Implementation


departments, as work to establishthe ODI gets underway inaccordance with the timetable in Section 9.4; and

• the Strategy Unit has discussedwith officials across government –especially those expected tocontribute to the nucleus of theODI – the steps that need to betaken to implement this report’srecommendations, andmechanisms are in place to takethese forward.

The Strategy Unit has also sought tomake sure that major organisationsrepresenting disabled people –along with employer organisations,trade unions and voluntaryorganisations – have all beeninvolved in identifying the right way forward to supporting disabledpeople to help themselves, and in improving their life chances.

9.2 A clear and understoodchallengeThe messages of this report will becommunicated to the many partnersand individuals who will be involved– directly or indirectly – in itsimplementation. The focus will be on the first half of 2005, but will be an ongoing process.

This report has been published in a range of accessible formats, andfeedback invited. Lead departmentswill be responsible for consulting on specific policy changes as theyare taken forward.

The contents of the report will be further disseminated throughupcoming conferences and seminars.Opportunities will be taken – byministers and officials – to speak at events organised by externalstakeholders. And where there areperceived to be gaps, governmentwill work with external stakeholdersto plan and hold additional events.These will cover the report as awhole and also specific key issues ofrehabilitation, equality awareness,capacity building and independentliving, issues where early significantchange is required. They would aimto communicate the case for reformand to involve stakeholders in theimplementation process.

A wider campaign of awareness-raising will be launched, tying inwith the opportunities presented by other initiatives such as theDisability Discrimination Bill. The aim will be to inform the publicabout the central messages ofdisabled people’s inclusion and whythat is not yet happening. This willhighlight the way that disabledpeople can be unintentionallyrendered dependent through thevarious barriers discussed in thisreport, and the need to consider the rights of disabled people to live independently with fullopportunities to improve theirquality of life.

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9.3 Clarity of rolesAll government departments will be responsible for taking forwardthe strategy for change initiated in this report. Clarity about thedifferent roles will need to beachieved quickly if early progress is to be made. The table at the end of this chapter lists all therecommendations from the chapters of this report and assigns responsibilities.

Central departments – No10, theTreasury and the Cabinet Office –will have a vital role in ensuring that the full Governmentcommitment demonstrated by thepublication of this report remainsstrongly evident, and thatdepartments’ commitments – to the strategy, the reform programme,and to establishing the ODI as an effective cross-governmentinstitution – are sustained.

Lead responsibility in governmentfor implementation of the reportwill rest with the Minister forDisabled People. The Minister forChildren, Young People and Familiesat DfES leads all government workon children and families, and willmake sure that all elements of thisreport with implications for childrenand families are implemented.Implementation of the report will bechampioned at Cabinet level by theSecretary of State for Work andPensions, coordinating a processthrough which departmentalSecretaries of State report progressannually to the Prime Minister on

both implementation of the strategy and delivery of the publicsector duty.

Lead responsibility for overallcoordination of the process ofimplementation, including buildingupon reactions to the publishedreport, will fall initially to the DWPDirector for Disability, who currentlysupports the Minister for DisabledPeople and whose command willundertake the preparatory work forthe launch of the ODI.

The Strategy Unit will manage theprocess of receiving feedback andresolving uncertainties aroundspecific recommendations, and willliaise with DWP to make sure thatall helpful ideas are fed into theimplementation process.

DWP will need to verify ministersand senior officials with nationalresponsibilities for disability issuesin each department, who willcollectively form the inter-departmental ministerial andofficials’ groups. DWP will ensurethat these groups are establishedunder the chairmanship of theMinister for Disabled People and theDWP Director respectively, and thatthey accept collective responsibilityfor progressing the implementationof the report’s recommendationsand for staffing the ODI.

DWP will establish liaison with the Devolved Administrations with a view to engaging them inappropriate ways with the strategy

IMPLEMENTATION


and reform process. It will also beimportant to ensure opportunitiesfor discussion with key partners and stakeholders who were involvedwith the project to make sure thatthey are clear about their roles andremits, with joint events to resolveany uncertainties and boundaryissues. These groups should includeorganisations of and for disabledpeople, family and carerorganisations, education, health and leisure bodies, inspectorates and academics working in this field.

9.4 Achieving and sustainingmomentumAs the essential conditions forsuccess are established through thesteps outlined in Sections 9.2 and9.3, new institutional arrangementswill be put in place and steps taken to plan effectively for theachievement of the report’srecommendations. The strategy laid down by this report will need to be carefully developed to include detailed responsibilitieson departments and agencies, and with milestones finalised forboth separate goals and for overall progress.

The Strategy Unit anticipates thatthe sequence for introducing theimmediate new institutionalarrangements will be:

• inter-departmental officials’ group– by March 2005;

• ministerial group – by March 2005;

• the ODI – launched by September2005 (but see below);

• National Forum of Organisationsof Disabled People – by September2005; and

• Task force for Independent Living– by December 2005.

The establishment of the ODI needsto be given particular attention. It can be secured without legislationor major resource switches oradditions, and that in turn will make possible most of the otherreforms. However there will need to be careful judgment about thebalance between putting this inplace quickly to show progress, andtaking the time to get the rightstructure. The ODI must also be seenas a means of facilitating progress,not distracting from it.

The timetable for the four stageprocess identified in Chapter 8should be as follows:

Stage One: DWP-led work withother departments to put in placethe ministerial and officials groupsand the other institutional changesand to co-ordinate planning towardsthe establishment of the ODI – from January 2005.

Stage Two: Launch of ODI followingarrival of dedicated staff fromdepartments, and operating corefunctions of establishing committeesecretariats, liaison with Scotlandand Wales, strategic planning forpursuit of the strategy and priorityrecommendations, engaging with

221

stakeholders, ensuring that the new institutional arrangements areworking effectively, and planninghow to approach SR2006 – by September 2005.

Stage Three: the ODI progressivelytakes on additional coordinatingand cross-cutting functions subject to resource availability.These functions would be additionalto activities already established bydepartments, and would potentiallyinclude: planning the reviews ofprovision, mainstreaming, standardsand inspection, development oftargets and spending requirements,establishing working agreementswith the Diversity Unit and theCEHR, implementing the annualreporting process, developingmodels for funding and contracting,examining performance manage-ment and incentives, promotingawareness, and developing acapacity for intelligence and datasharing – by September 2006.

Stage Four: Reviewing andmodifying arrangements withexperience: an opportunity to reflectupon progress being made andconsider changes to the remit in thelight of (a) the emerging roles of theCEHR; (b) the relative attraction ofadding into the ODI the DWPfunctions of legislation, civil rights,oversight of the DRC, analysis andpossibly DLA strategy; and (c) therelative success of joint-working – by September 2007.

Beyond institutional change, andassisted by the existence of newmachinery, sound planning will berequired to secure practicalcommitment to changes in delivery,such as reviewing programmestructures, and introducing newapproaches to independent living,preparing for SR2006, anddeveloping PSA targets that reflectthe evidence base on disabledpeople’s outcomes. There will need to be a realistic and achievableschedule for moving forward on the recommendations, establishedby each individual departmentworking with the ODI. Relevantcriteria will include:

• each department’s resourcebaseline and pressures;

• fit with existing PSA and other top priorities;

• fit with current changeprogrammes;

• available staff and financialresources;

• invest-to-save opportunities;

• relations with main stakeholders;

• political and media sensitivities;and

• technical feasibility of proposed changes.

The inter-departmental officials’group should receive proposals fromthe ODI for a considered programme

IMPLEMENTATION


of implementation of this report’srecommendations addressing bothimmediate and longer-term reforms, progress on which willremain the responsibility of eachdepartment, and which take account of the circumstances ofindividual departments. Once theofficials’ group is content theprogramme should be put to theministerial group for endorsement.This is an iterative process wherebyperformance in one time period will inform progress in the next time period.

Any impact secured by thepublication of the project will behard to sustain against competingissues, and it is therefore vital tomake some significant early changeswith a life of their own beforeresources and political interest moveinevitably on to other things.

Looking ahead, this report envisagesa staged approach to overallimplementation.

• In the short term, the focus will beon making effective use ofexisting resources, and on buildinga robust evidence base andconsensus for the way forward.

• In the light of this evidence base,options should be considered for a coherent package of pilots andnew approaches, for whichfunding could potentially besought in Spending Review 2006.

• In the longer-term, and subject toevaluation of the evidence and to

the availability of resources,successful approaches should beintroduced at national level.

9.5 Measuring successImplementation of the package of measures set out in this report should:

• increase disabled people’s abilityto live independently – to enjoythe same choice, control andfreedom as any other citizen – athome, at work, and as members of the community;

• enable young disabled childrenand their families to enjoy‘ordinary’ lives, through access tochildcare, early education andearly family support to enablethem to care for their childeffectively and remain socially andeconomically included;

• support disabled young peopleand their families through thetransition to adulthood. Transitionwill be better planned around theneeds of the individuals andservice delivery will be smoothacross the transition; and

• increase the number of disabledpeople in employment whileproviding support and security for those unable to work.

It will be important to developspecific indicators of progress tomeasure whether these outcomeshave been achieved. Theseindicators should be outcome-based

223IMPLEMENTATION

and should not add undue burdensin terms of data collection.Government departments should beresponsible for reporting on each ofthe indicators relevant to theirrecommendations through theannual reporting process. Theseindicators should be developedthrough consultation with relevantbodies including local authorities.

Recommendation 9.1: Developing measurables

From 2005, ODI, with supportfrom other Governmentdepartments, to develop specific,outcome-based indicators toenable progress on therecommendations in this report to be measured.

9.6 Resources lined up Beyond a small commitment of staff resource, the early stages ofimplementation are not dependentupon additional resources in theSR2004 period. The institutionalchanges and other measures can be driven through in this periodprovided that departments operatewith a degree of flexibility withinexisting allocations of staff and cash– which is why their commitment is so central. To the extent that thisreport’s recommendations have new resource implications, they willin the main have to be timed to fitwith windows of opportunity for new bids and allocations, in Pre-Budget Reports, Budgets andSpending Reviews.

However this report constructs a case for persuasive bids to be putforward within SR2006, providedthat the evidence is assembled andarrangements for effective deliveryare in place. With the 20 year timehorizon of the vision it will not becredible for the recommendations to be challenged on the grounds of available resources, only on timescales.


Summary of recommendations for quick reference

This list provides short summaries of each of the recommendationscontained in the main report. It is important to note that therecommendations in the main reporttext are the agreed versions forimplementation; this summary tableis for quick reference only.

‘Lead responsibility’ shows thegovernment departmentaccountable for initiating action.Where the Office for Disability Issues (ODI) is shown, DWP will lead as necessary until the ODI isestablished. Implementation of the recommendations is subject to future decisions about resource allocation.

Chapter 4: Independent Living

(4.1) Modelling good practiceGovernment departments should model good practice in involvingdisabled people.

(4.2) User involvement protocolsshould be developed by public bodies,in consultation with disabled people.

(4.3) User-led organisationsEach locality should have a user-ledorganisation modelled on existing CILs.

(4.4) Supporting independent livingWork towards a new approach thatdelivers support, equipment and/oradaptations according to the principlesset out on page 77.

(4.5) Piloting individualised budgetsDevelop an evidence base for individualbudgets which bring together sourcesof funding, services, equipment and adaptations.

(4.6) The role of local authoritiesLocal authorities should have a key strategic role in delivering the new system

Governmentdepartments

Governmentdepartments/serviceproviders

DH andODPM

DH

DH

ODPM

ODI

ODI

DWP,DfES,ODPM

DWP,ODPM

DH

2005 onwards

By 2006

By 2010

By 2012

Early 2005onwards

2005 onwards

Summary of recommendations Lead In support By whenresponsibility

225IMPLEMENTATION

(4.7) Information and adviceDH should assess existing informationand advice provision and consider anSR06 bid to address any gaps.

(4.8) Supporting disabled people tohelp themselvesDH should: a) introduce, after consultation, a moreappropriate definition of ‘disabledperson’ for community care services;b) consult on merits of a ‘right torequest’ not to live in a residential ornursing care setting; c) analyse costs and benefits ofamending charging policies forresidential care; d) consider an ‘invest-to-save’ SR06 case for community-based resources for those otherwise placed inresidential care

(4.9) Improving the DFGODPM should consider reform to the DFG in the light of the forthcoming review.

(4.10) Including disabled people inhousing initiativesODPM should work with organisationsof disabled people and others to ensure housing initiatives includedisabled people.

(4.11) Lifetime HomesReview the effect of the 1999 guidanceon access to dwellings, and consider the feasibility of incorporating LifetimeHomes standards into BuildingRegulations.

(4.12) Transport and independent livingEncourage local authorities to include transport and mobility needs of disabled people in assessments within the new system of individualised budgets

DH

DH

ODPM

ODPM

ODPM

DH

By 2006

a) As soon aspossible

b) In 2005

c) By end2006

d) By 2006

By 2005

2005 onwards

By 2006

2005 onwards



(4.13) Transport and local authoritiesEncourage local authorities to play astrategic role to ensure that disabledpeople do not experience barriers on journeys.

Chapter 5: Early Years and Family Support

(5.1) Individualised budgetsIndividualised budgets should, inprinciple, be extended to families withdisabled children.

(5.2) Childcare and early educationa) All 3-4 year old disabled childrenshould have access the free part-timeearly education provision and providerswill have access to a fully-support earlyyears SENCO.b) Families with a disabled child under5 years to be able to access high quality,flexible childcare. c) Extension of ‘wraparound’ care to be fully accessible to disabled childrenover 5 years.

(5.3) Evaluation of children’s servicesa) National evaluations of children’sservices to assess impacts on familieswith disabled children. b) Guidance should be issued on localand regional evaluations of children’sservices to ensure they take account ofthe needs of disabled children.

(5.4) Keyworkersa) Provision of a keyworker to familiesshould be considered as a keyperformance indicator. b) Children’s Trusts should ensure thatall families have access to clearinformation about local support.

DfT

DH

a) DfES

b) Sure StartUnit

c) DfES

a) DfES

b) DH andDfES

a) DfES andDH

b) DfES

DfES, DWP,ODPM

2005 onwards

By 2012

a) By 2010

b) By 2015

c) As this isrolled out.

a) 2005onwards

b) 2005onwards

a) 2006onwards

b) 2006onwards


227IMPLEMENTATION

(5.5) Early interventionPhase one: Identify mechanisms thatenable local authorities to switch spendfrom later intervention to earlyintervention.Phase two: Depending on Phase oneoutcomes, assess the case for an invest-to-save pilot for early intervention.

(5.6) Equipmenta) Assess whether community servicesare able to deliver the NSFrecommendation on children’sequipment, and, if not, makerecommendations for improvement. b) Equipment services should beconsidered as a key performanceindicator of council social care andeducation services.

(5.7) HousingRecommendation 4.9 should also applyto families with disabled children anddisabled parents.

(5.8) WorkforceThe children’s workforce should becapable of meeting the needs ofdisabled children.

(5.9) Children’s TrustsLocal authorities, PCTs and Children’sTrusts should work together and withpartners to commission services for alldisabled children.

(5.10) Joint Area ReviewsConsider how disabled children can bereflected in the Joint Area Reviews ofchildren’s services and in the CPA.

(5.11) Data collection and information sharinga) Coordinate basic data on the numberand needs of disabled children in local areas.

DfES

a) DH

b) DfES andDH

ODPM

DfES

DfES and DH

DfES and DH

a) DfES andDH

DH

DfES

DH

1) By 2006with followup studies.2) 2006onwards

a) By 2006

b) 2006onwards

By 2005

Incorporateinto currentwork

Incorporateinto currentwork

2006 onwards

a) 2005onwards



b) Include disabled children in theChildren Act databases. c) Include disabled children in theCommon Assessment Framework.

Chapter 6: Transition to Adulthood

(6.1) Continuity in delivery from childand adult servicesa) Different models of multi-agencytransition should be evaluated anddisseminated. b) Children’s Trusts should beencouraged to work as necessary with young disabled people up to theage of 25. c) Pilots should assess howindividualised budgets could cover thetransition period.

(6.2) Adult programmes extend self-directed control to young peoplewhen they are readya) Collate and disseminate goodpractice examples, including ExpertPatient model.b) Investigate how ICES initiatives canensure they include children and young people.c) Support for young people developing individual budget plans (as per recommendation 4.3)

(6.3) “Universal” services assessed onmeeting the needs of disabled youngpeople and their familiesFacilitating evaluation of new model ofservice delivery through better evidencevia the new public sector duty,improving collection of information,better inspections, and clearerperformance indicators, and targets.

b) DfES andDHc) DfES andDH

a) DfES

b) DfES

c) DH

a) DH

b) DH

a) Allgovernmentdepartmentsb) DRCc) DWPd) Ofsted andHealthcarecommissione) DfESf) DfES

c) DWP,DfES,ODPM

e) DH andDCMS

b) Incorporateinto currentworkc) Incorporateinto currentwork

a) By 2006

b) 2005onwards

c) By 2012

a) By 2006

b) By 2006

c) 2006/7 andongoing

e) By 2006


229IMPLEMENTATION

(6.4) Family support that bridges transitiona) Review remit of Family Fund Trust.

b) Individualised budgets (as perrecommendation 6.1) should supportyoung people and their families across transition.

(6.5) Access to good quality local informationDisabled young people and theirfamilies should receive local andnational information at transition.

(6.6) Disabled young people should beincluded in planning that is centred ontheir own needsa) Good practice models forsubcontracting most specialist transitionsupport provision should bedisseminated. b) DfES and DH should considermapping youth centred approaches to transition planning, evaluatingdifferent models, and informing the development of Individual Learning Plans. c) Promotion of person-centredplanning practice nationally.

(6.7) Ensuring advice and guidance istailored to meet the needs of disabledyoung peopleDfES should ensure that arrangementsfor providing advice and guidance toyoung people, including Connexions,meet the needs of all disabled young people.

(6.8) Individualised learning andvocational pathways into employmenta) New arrangements from Tomlinsongroup’s recommendations to includedisabled young people.

a) DfES

b) DH

DfES

a) DfES

b) DfES and DH

DfES

a) DfES andLSC

a) FamilyFund b) DWP,DfES,ODPM

DH and DWP

a) By 2006

b) By 2012

By 2008

a) 2006onwards

b) 2007onwards

c) By 2010

From 2005

a) 2006onwards



b) Good practice examples should beissued to employers and ACAS onHealth and Safety and child protection.

c) Lifelong Learning UK should developcareer structures and skills of staffworking with young people with SEN.

(6.9) Access to leisure and independentliving needs to be ensureda) Code of practice on public sector duty to include increasingopportunities for participation ofdisabled young people. b) Research on meaningful life options for young people with highestlevel of needs.

Chapter 7: Employment

(7.1) Rehabilitationa) A set of arrangements for vocationalrehabilitation available and accessiblefor both employers, employees andbenefit claimants. b) Joint working between DH and DWPthrough the Health Safety andProductivity Workforcec) Invite the Academy of Royal MedicalColleges to examine how to increaseattention to work as a positive driverfor good health.

(7.2) Occupational healtha) Encourage increases in the qualityand quantity of OH provision.b) Encourage employers to provide OHservices to their employers.

(7.3) The role of GPsIdentify, and assist GPs to adopt, bestpractice in patient care.

(7.4) Benefits assessmentsa) Review the processes of assessingeligibility for disability-related benefits.

b) DfES

c) DfES andLSC

a) DWP

b) DH

a) DWP andDH

b) DH andDWP

b) DH

a) DH andDWPb) DH, DWPand HMT

DWP and DH

a) DWP

b) 2006onwards

c) 2006onwards

a) 2005onwards

b) 2005onwards

a) By 2008

a) 2008onwardsb) 2008onwards

By 2007

a) By 2008


231IMPLEMENTATION

b) Identify whether the PCA is nearestthe optimum point or can be furtherrepositioned.

(7.5) Capability ReportRoll out the Capability Reportnationwide, subject to evidence, andover time widen its scope.

(7.6) Mainstreaming in the LSCThe LSC should aim to increase theproportion of disabled learners ineducation and training.

(7.7) “Welfare to WorkforceDevelopment”Recommendations from this reportshould be implemented as a matter of priority.

(7.8) Employer Training Pilots (ETPs)a) Ensure New Deal for Skills and ETPsmeet the needs of disabled people.b) Develop evidence to explain whydisabled people appear to fare less wellin ETPs and work with LSC on impactmeasures for disabled people inApprenticeships.

(7.9) Connexions and IAGShould have the ability to providespecialist advice to disabled people.

(7.10) In-work support through AtWA new system of in-work supportthrough AtW which aims to increaserecruitment and retention rates ofdisabled people.

(7.11) Linking rules and incentives to worka) Provide better guidance to benefitclaimants on the linking rules andfinancial incentives to return to work.b) Deliver changes to the currentpermitted work rules system, andfurther investigate the 5-16 hour issue.

a) DWP

DWP

DfES

DWP

a) DWP andDfES

b) DfES

DfES

DWP

a) DWP

b) DWP

LSC

a) By 2006

2005onwards

2006 onwards

2005 onwards

a) 2005onwards

b) 2005onwards

2005 onwards

By 2010

a) 2006onwards

b) In 2006



(7.12) Job broker activityImprove referral arrangements to NDDPJob brokers and develop the role of Job brokers.

(7.13) Supported EmploymentIncrease the flexibility of budgetswithin the current supportedemployment programmes.

(7.14) Employer awarenessEmployers should lead a campaignpromoting the business benefits ofemploying disabled people.

(7.15) Advice for employersA single, well known, point ofinformation and advice for employersto be considered.

(7.16) Jobcentre Plus and employersDevelop ‘reference sales’ products ondisability issues for SMEs.

(7.17) Investors in People and thedisability symbola) Review the effectiveness of thedisability symbol.b) Consider including employment of disabled people in accreditationcriteria and monitor through three year review process. c) Consider consulting with businessand trade unions on potentialemployment standard.

(7.18) Impact of the public sector dutyPublic Authorities should take the lead in demonstrating, promoting and reporting on best practice on the recruitment and retention ofdisabled people.

DWP

DWP

DWP and DTI

DWP, DH andDTI

DWP

a) DWP

b) DfES

c) DTI

Governmentdepartments,governmentagencies,localauthorities

b) IiP

By 2006

2006 onwards

2006 onwards

By 2006

By 2008

a) By 2007b-c) Between 2005and 2007

2006 onwards


233IMPLEMENTATION

(7.19) Online directory of servicesNational online directory of serviceproviders should be developed toinform disabled people of the services offered to them and a national helpline.

(7.20) Employment adviceExplore and test options for placingvocational advisors in healthcare andother settings.

Chapter 8: Towards Improved Delivery327

(8.1) An evolving strategyThe strategy for improving the lifechances of disabled people should befully developed and timetabled withmilestones, communicated widely, and aimed at steady progressive reformto 2025.

(8.2) A review of provisionProvision for disabled people should bereviewed and a new mix of mainstream,specialist and integrated provisionderived from the strategy.

(8.3) StandardsMore coherent and explicit standardsshould be developed bringinglegislation and other rights into acoherent framework.

(8.4) Incentives for effective deliveryA review of provision should addressways of incentivising effective deliveryof services which meet the needs ofdisabled people.

DWP

DWP and DH





DfES and DH

ODI

ODI

ODI

ODI

By 2008

Testing from2006. Rolloutfrom 2008

Initial activityby 2006, thenongoing





327 Chapter 8 recommendations will require the ODI to fulfil its specific responsibilities,which will require the active involvement of other Government Departments, as well asother Government Departments fulfilling the responsibilities they have outside of theODI remit.


(8.5) Government leadership of reformA strong focus is required withinGovernment to ensure that priority isgiven to disability issues, and to provideoversight of a process to reformdelivery in line with the public servicereform agenda.

(8.6) ParticipationNew arrangements should beestablished for securing participation of disabled people in policy design anddelivery at all levels.

Chapter 9: Implementation

(9.1) Developing measurablesDevelop specific, outcome-basedindicators to enable progress on the recommendations in this report to be measured.



ODI

ODI

ODI




From 2005


235

The Strategy Unit was created by amerger of the Performance andInnovation Unit, the Prime Minister’sForward Strategy Unit and part ofthe Policy Studies Directorate of theCentre for Management and PolicyStudies. The unit performs a rangeof functions, including long-termstrategic reviews of major areas ofpolicy, studies of cross-cutting policyissues, strategic audits and jointwork with departments to promotestrategic thinking and improvepolicy-making across Whitehall.

The Strategy Unit reports to the Prime Minister through theChancellor of the Duchy of Lancasterand the Cabinet Secretary.

Comprehensive information aboutthe work of the Strategy Unit and itsprojects can be found on theStrategy Unit’s web-site atwww.strategy.gov.uk.

ANNEX

Annex A: The role of the Strategy Unit

237ANNEX

This report was prepared by a multi-disciplinary team guided by aSponsor Minister, an Advisory Groupand three Expert Groups.

The Strategy Unit project team is described in Section B.1 of thisannex. The Sponsor Minister isnamed in Section B.2. Section B.3describes the composition of theAdvisory Group and the three Expert Groups.

B.1 The Strategy Unit project teamThe Strategy Unit team includedteam members with experience ineconomics, policy-making and issuesaffecting disabled people. The teamwas made up of a mix of some civilservants and some drawn fromoutside Whitehall.

The project team comprised:

Stephen AldridgeChief Economist and DeputyDirector, Strategy Unit

Esmee BrenellsStrategy Unit

Ian Coates (team leader)Strategy Unit

John FullerDepartment for Work and Pensions,on secondment to the Strategy Unit

Nicholas GarlandStrategy Unit

Sarah JamesEssex County Council, on secondment to the Strategy Unit

Tina KarageorghisStrategy Unit

Halima KhanStrategy Unit

Dr Rannia LeontaridiEconomist, Strategy Unit

Clare LombardelliEconomist, Strategy Unit

Sally McManusNational Centre for Social Research,on secondment to the Strategy Unit

Suzanne MoroneyNational Employment Panel,Department for Work and Pensions,on secondment to the Strategy Unit

Dr Jenny MorrisConsultant

Additional assistance was providedby Sharon Clowery from theDepartment for Work and Pensions.

Annex B: Project team, Sponsor Minister,Advisory Group and Expert Groups


Research assistance was provided by Laura Gregory (Strategy Unit) and by Lucy McKee (on workplacement from the Governmentand Opposition Whips Office, Cabinet Office).

B.2 The Sponsor MinisterThe work of all Strategy Unit teamsis overseen by a Sponsor Minister, inthis case Maria Eagle, Minister forDisabled People in the Departmentof Work and Pensions.

B.3 The Advisory Group andExpert GroupsThe project team appointed anAdvisory Group and three ExpertGroups to assist with the analysis.Individuals were selected to give a range and balance of expertiseand backgrounds. The AdvisoryGroup met on four occasions toconsider the Strategy Unit’s:

• initial assessment of priority areasand common themes;

• analysis of the issues;

• vision for the future; and

• draft final report.

The three Expert Groups discussedseparate strands of the overallanalysis – early years, theemployment perspective andindependent living. All groupsplayed a crucial part in the project,but were advisory, and this reportdoes not necessarily reflect

their views. The Strategy Unit isindebted to all those who gave of their time to participate on theadvisory or expert groups.

Advisory Group Members

Stephen AldridgeChief Economist and DeputyDirector, Strategy Unit

Baroness Cathy Ashton(Phil Snell attended three meetingson Baroness Ashton’s behalf)Parliamentary Under Secretary of State, Department for Educationand Skills/Department for Work and Pensions

Jane Campbell MBEChair, Social Care Institute for Excellence

Maria Eagle MPMinister for Disabled People, Department for Work and Pensions

Bruce CalderwoodDepartment for Work and Pensions

Yvette Cooper MP (Sheila Fletcher attended twice on Yvette Cooper’s behalf)Parliamentary Under Secretary of State, Office of the Deputy Prime Minister

Gareth DaviesNo. 10

Ann FryeDepartment for Transport

239

Nicholas HolgateHM Treasury

Dr Stephen Ladyman MP (Ian Berry attended once on Dr Stephen Ladymans’s behalf)Parliamentary Under Secretary of State for Community, Department of Health

Christine LenehanDirector, Council for Disabled Children

Bert Massie CBEChair, Disability Rights Commission

Norman Glass CBEChief Executive, The National Centrefor Social Research

Mark ThompsonDirector-General, BBC

Claire Tyler(Ruth Stanier attended twomeetings on Claire Tyler’s behalf)Social Exclusion Unit, Office of theDeputy Prime Minister

Sally WitcherChair, Disability EmploymentAdvisory Committee

Early Years Expert Group

Francine BatesChief Executive, Contact A Family

Lesley CampbellChildren’s Officer, Mencap

Gill EdelmanChief Executive, I CAN

Christine LenehanDirector, Council for Disabled Children

Nigel NichollsTrustee, Contact A Family

Dr Philippa Russell CBEDisability Rights Commissioner,National Children's Bureau

National Employment PanelEmployers’ Expert Group

Sly BaileyChief Executive, Trinity Mirror

Catherine BrownManaging Director, BUPA WellnessLawrence Churchill Chair Designate,Pension Protection Fund

Neil CoulingDirector, South East RegionJobcentre Plus

Adam CrozierChief Executive, Royal Mail Group plc

Philip FriendPartner and Director, Churchill & Friend

Lorraine GradwellChief Executive, Breakthrough UK

Steve HarveyDirector of People & Culture,Microsoft Ltd

Marilyn HowardConsultant

Maurice OstroManaging Director, Air Fayre Limited

Michael RichardsonDirector, Welfare, Work and Poverty Directorate, Department for Work and Pensions

ANNEX


Rob SykesChief Executive, Worcestershire County Council

Bob WarnerChief Executive, Remploy Limited

Independent Living Expert Group

Dr Ian BasnettConsultant in Public Health

Nasa BegumPrincipal Adviser Participation, SocialCare Institute for Excellence

Peter BeresfordProfessor of Social Policy, BrunelUniversity, Chair of Shaping OurLives and long term user of mentalhealth services

Peter CampbellMental health system survivor

Nick DanagherChief Executive of SurreyIndependent Living Council

John EvansPresident of the European networkof Independent Living, founder of the Hampshire Centre forIndependent Living

Frances HaslerChief Executive, National Centre for Independent Living

Ann Macfarlane MBE, Rights and Independent Living consultant

David MorrisSenior Policy and Project Manager,Greater London Authority

Abina Parshad Griffin

Mental Health Action Group,Disability Rights Commission

Rachel PerkinsClinical Director and ConsultantClinical Psychologist, Adult MentalHealth Services, South West London& St. George's Mental Health NHSTrust, Vice Chair of the ManicDepression Fellowship, MentalHealth Service User

David PughChair, Manic Depression Fellowship

Liz SayceDirector, Policy and Communications,Disability Rights Commission

241ANNEX

The Strategy Unit drew on a widerange of expertise and experience in formulating this report. Section C.1 of this annex lists theorganisations and individuals thatengaged with the Strategy Unitteam in face-to-face bilateraldiscussions and site visits.

Sections C.2 to C.4 provide anoverview of the range of otherconsultation processes undertaken.Section C.2 outlines the shadowingof disabled people that teammembers undertook. The programme of focus groupconsultations with disabled people(of varying ages and impairments),their families, and service providersis introduced in Section C.3, anddetailed more fully in Annex D.Section C.4 introduces the writtencorrespondence with stakeholdersand experts that also providedimportant input to the project, these are summarised in Annex E.

C.1 Bilateral discussions

The team was assisted by being ableto draw on the experience andadvice of a number of experts andstakeholders who attended face-to-face bilateral discussions with and/ororganised site visits for the team.

We would like to thanks thefollowing for their input:

Action for Blind People

Advisory, Conciliation andArbitration Service (ACAS)

Association of Directors of SocialServices (ADSS)

Aiding Communication in Education(ACE)

Air Fayre Ltd

aMaze

Aylesbury Community Head Injury Service

Barnado’s

Baskerville School, Birmingham

BBC, Mark Thompson

BBC Strategy Unit

Beaumont College, Lancaster

Blue Arrow

Breakthrough UK Ltd

Bristol Disabled Living Centre

British Council of Disabled People(BCODP)

British Deaf Association (BDA)

British Medical Association (BMA)

British Society for RehabilitationalMedicine, Andrew Frank

Brunel University, Deborah Mabbett

BskyB

Annex C: Bilateral discussions and anoverviewof the consultation processes


BUPA

Cabinet Office

Centre for Analysis of SocialExclusion (CASE), London School ofEconomics and Political Science (LSE)

Centre for Research in Social Policy(CRSP), Loughborough University

Chelwood Nursery School

The Cherry Trees School

Churchill and Friend

Civil Service Disability Working Group

Council for Disabled Children (CDC)

Commission for Social CareInspection (CSCI)

Confederation of British Industry(CBI)

Connexions Cornwall-Devon

Connexions Nottinghamshire

Contact a Family

Cornell University, Susanne Bruyere

Lesley Dee, Cambridge University

Disability Employment AdvisoryCommittee (DEAC)

Demos

Department for Culture, Media andSport (DCMS)

Department for Education and Skills(DfES)

Department for Work and Pensions(DWP)

Department for Transport (DfT)

Department of Health (DH)

Department of Employment andLearning (DEL), Northern Ireland

Department for Environment, Food and Rural Affairs (Defra)

Department of Trade and Industry(DTI)

Direct Payments Service, Bristol

Disability Alliance

Disability Awareness in Action (DAA)

Disability Matters Disability RightsCommission (DRC)

Disabilities Trust

Disabled People South Africa

Early Support Programme DfES/RNID

Equalities

Employers Forum on Disability

Essex Coalition of Disabled People

Essex County Council

Essex Independent Living Advocacy

Federation of Small Businesses

Julie Fernandez, actress andcampaigner

Foundation for People withLearning Difficulties

Hammersmith and Fulham Council

Headway

Health Development Agency, Mike Kelly

HM Treasury

Home Office

Marilyn Howard, independentconsultant

ICAN

Independent Living AdvocacyLimited

243

Institute of Fiscal Studies (IFS), James Banks

Jobcentre Plus

Joseph Rowntree Foundation (JRF)

Kent County Council

Kings Fund

Learning and Skills Council (LSC)

Learning Disability Task Force

Leonard Cheshire Foundation

London Borough of Hammersmithand Fulham, Ravi Gurumurthy

Low Incomes Tax Reform Group

Mencap

Microsoft

MIND (National Association forMental Health)

MS Society

National Autistic Society (NAS)

National Centre for IndependentLiving (NCIL)

National Centre for Social Research(NatCen)

National Children’s Bureau (NCB)

National Forum of People withLearning Difficulties

National Health InnovationsNetwork, Bob Grove

National Library for the Blind

National Service Framework forLong Term Conditions

National Union of Students (NUS)

National Youth Agency

New Zealand Disabled People’sAssociation

New Zealand Office of DisabilityIssues

Norah Fry Centre, Bristol

Nottingham University, Sonali Shahand Jill Pascall

Nottinghamshire County Council

Number 10 Downing Street

Office of the Deputy Prime Minister(ODPM)

Options for Independent LivingHousing and Transport Groups Essex

Geraldine Peacock – Civil ServiceCommissioner

People First

RADAR

Remploy

Royal Mail Group plc.

Royal National Institute of the Blind(RNIB)

Royal National Institute of the Deaf(RNID)

St Michael’s RC Secondary School

SCOPE

Scottish Executive

SCOVO

Shaw Trust

SKILL

Small Business Service (SBS)

Social Care Institute for Excellence(SCIE)

Social Exclusion Unit (SEU), ODPM

Social Market Foundation

Social Policy Research Unit (SPRU),York University

South Africa Office on the Status ofDisabled People

Suffolk County Council, includingyoung people consultation group

ANNEX


Sure Start Unit , Tania Burchardt

Trades Union Congress (TUC)

Triangle

Trinity Mirror

Turning Point

University of Bristol, Paul Gregg

University of Cambridge, HollySutherland

University of Leeds, Colin Barnes

University of Leeds, Gerald Wistow

UnumProvident

Values into Action

Valuing People Support Team

Welsh Assembly Government

Welsh Centre for LearningDifficulties

West England Centre for InclusiveLiving (WECIL)

Worchester County Council

WorkWAYS, Exeter

Young Minds

Zurich Financial Services

C.2 Shadowing

Members of the project teamshadowed disabled people in avariety of settings in order to learnfrom their personal perspective. The Strategy Unit is most indebtedto these individuals and extends tothem its particular thanks.

C.3 Focus group consultations

The Strategy Unit team benefitedfrom a programme of ‘focus group’

consultations with disabled people(of varying ages and impairments),their families, and service providers.These are described more fully inAnnex D, which is publishedseparately from the main report atwww.strategy.gov.uk

C.4 Written submissions received

Written correspondence withstakeholders and experts alsoprovided key input to the project,and these are summarised in AnnexE, which is published separatelyfrom the main report. Submissionswere invited via the Strategy Unitwebsite in response to publicationof the project’s Interim Report. Thefull papers and responses to themare available at www.strategy.gov.uk

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