Fulfilling potential ecdp response (march 2012) - final

Fulfilling Potentialecdp response, March 2012

Graphicking image drawn by Sidbaility during one of ecdp’s Fulfilling Potential focus groupshttp://www.stephenleehodgkins.net/

http://www.stephenleehodgkins.net/

Fulfilling Potential – ecdp response

About this document

This is ecdp’s response to the Government’s Fulfilling Potential discussioni. It has been coproduced with our members to ensure it fundamentally reflects the views and lived experiences of disabled people in Essex and beyond. For full details of our engagement work with disabled people to inform this response – which directly engaged with just under 650 disabled people – please see Annex 1.

Additionally, this report draws upon a wide range of work on a variety of topics that ecdp has done over the last 5 years in particular – listening to, capturing and understanding the lived experience of disabled people in Essex. Recent work we have done relevant to the Fulfilling Potential discussion includes topics such as: Choice and Control in health and social care, including Direct Payments and Personal Budgets Employment and employment support including Access to Work Disability hate crime and hostility Welfare reform and benefits, including Disability Living Allowance, Independent Living Fund and

Personal Independence Payment Participation, accessing the community and volunteering.

The structure of our response is described below.

Section 1: Preamble

The preamble sets out ecdp’s vision for disabled people contributing as equal members of society. It explores the developments which have led to the current position and context within which the Fulfilling Potential discussion is taking place.

Section 2: ecdp response

ecdp’s response forms the bulk of this report and represents the direct voice and lived experience of our members and disabled people in Essex and beyond we’ve directly engaged with – approximately 650 people.

Questions 1-10 asked in the Fulfilling Potential discussion document are addressed in the following three parts:

Part 1: Realising Aspirations: In this part we discuss the societal barriers which currently prevent disabled people from having the same opportunities as non-disabled people. Issues experienced in education, employment and independent living formed part of the discussion and suggestions were made about how these issues can be overcome.

Part 2: Individual Control: In this part we explore what individual control means to different disabled people and how the Government’s Disability Strategy can be developed to ensure all disabled people have control in their everyday lives.

Part 3: Changing attitudes and behaviours: In this part we examine some of the ways disabled people continue to be treated differently to others in society and how the Disability Strategy might help to shape more positive attitudes towards disabled people.

Section 3: The role of the DPULOs in achieving this

In this section we set out what role we think Disabled People’s User-Led Organisations (like ecdp) have in achieving an enabling state and type of society for disabled people we have talked about in Sections 1 and 2.

iEnd notes

? ODI: Fulfilling Potentialhttp://odi.dwp.gov.uk/docs/fulfilling-potential/fulfilling-potential-discussion.pdf

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http://odi.dwp.gov.uk/docs/fulfilling-potential/fulfilling-potential-discussion.pdf


Response submitted March 2012. For further information on any element of this document, please contact Rich Watts (Director of Policy & Development, ecdp) on [email protected] or 01245 392 324.

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mailto:[email protected]


SECTION 1: PREAMBLE

Sections 2 and 3 of our response correspond more directly to the questions posed in Fulfilling Potential. We are using the opportunity afforded by the discussion paper, however, to set out in this Preamble our take on the current disability picture and a positive vision for the contribution disabled people can make to society.

We therefore hope this Preamble places our response in the wider context of our vision to enhance the everyday lives of disabled people and what this means in practice.

Specifically, in “To what end?” below, we set out our answer to the question of what will be enough to achieve disability equality. Before that, we reflect on the progress that has been made over the last generation in working towards disability equality.

Life chances of disabled people

Though there have been many major developments in the drive for disability equality – through the 1970s/80s with the advent of Centres for Independent Living, and then from 1995 onwards with the introduction of the Disability Discrimination Act and subsequent legislation – disabled people remain amongst the most disadvantaged in society.

Some key statistics suggest that the wider change in society that was hoped would flow from a good legislative base have not yet been realised.

The employment rate of disabled people increased from 43% in 1997 to 44.5% in 2005 to 48.4% in 2008. However, though the gap compared to the overall employment rate has narrowed from 35.6% in 2005 to 31.2% in 2008, the majority of disabled people are not in employment. Furthermore, the average gross hourly pay for disabled employees is £11.08 compared to £12.30 for non-disabled employees.

In education, 23% of disabled people have no qualifications compared to 9% of non-disabled people. There has been a slight increase in the percentage of learners with a learning disability participating in Further Education, from 10.5% of all learners in 2005/06 to 11.6% in 2006/07 and 11.9% in 2007/08, but significant issues relating to disability and education remain.

In social care – arguably the focus of most policy relating to disabled (and older) people since 2007 – Direct Payments were only made to 6.5% of all people using services – some 115,000 adults aged over 18 (2008/09). (This figure includes 29,000 carers, who represent approximately 25% of all DP users.)

In volunteering, disabled people are significantly less likely to engage in formal volunteering than non-disabled people: some 21% of disabled people volunteered in 2008 (a decrease from 23% in 2001) compared to 27% of non-disabled people in 2008 (itself a decrease from 28% in 2001).

Nearly half of all adults who have never used the internet are disabled people. In December 2011, 8.2m adults – some 16% of the UK’s adult population – had never used the internet. Of these, 3.98m were disabled people. This represents 49% of all those who had never used the internet and 35% of all disabled adults.

But there are some silver linings. For example, figures from 2008/09 show that disabled people are significantly more likely to have participated in civic lifeii than non-disabled people. In 2008/09, 42% of disabled people participated in civic life compared to 37% of non-disabled people. Given current policy drivers, this is encouraging.

The disability rights framework

The disability rights framework that now exists has undoubtedly been a significant success for the disability movement. After the introduction of the Disability Discrimination Act in 1995 – though by no means perfect legislation (with gaps in its coverage, weak protection, and inadequate enforcement

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provisions) – there followed more significant legislative progress with a further Disability Discrimination Act (2005) and the Equality Act (2010), the Direct Payments Act (1996) and the Special Educational Needs and Disability Act (2001). Furthermore, in 2007 the UK was a signatory to the UN Convention on the Rights of Persons with Disabilities [sic] and ratified it in June 2009 (with some opt-outs). The overall effect of this legislative framework was one that moved from negative compliance with the law to the positive duty to promote equality for disabled people.

Informing and emanating from this framework were significant structural advances through, for example, the Disability Rights Task Force (1997-1999), the creation of the Disability Rights Commission (1999-2007) (since becoming the Equality & Human Rights Commission, with its attendant Disability Committee) and the establishment of the cross-government Office for Disability Issues in 2005.

And at least two significant policy drivers contributed to this period through the publication of the Strategy Unit’s Improving the Life Chances of Disabled People Report (2005), which gave rise to the Independent Living Review (2006-2008) and the subsequent publication of the Independent Living Strategy (2008).

The positive trend continues to this day in some major areas of policy, with Fulfilling Potential itself, the SEN Green Paper, continuing personalisation in social care and its wider roll-out in health.

Nevertheless, though a comprehensive disability rights and policy framework has been established over the last generation, this by itself hasn't been enough to transform disabled people's life chances.

The question becomes: what will be enough?

There is disagreement within the disability movement about what outcome is wanted, let alone what is required to get there. ecdp is therefore using the opportunity of Fulfilling Potential to set out some of what we think should be both the outcomes to be achieved for disabled people and the means by which they will be delivered.

In doing so, we aim to look beyond the current economic circumstances whilst being mindful of their current effects. We hope and expect that Fulfilling Potential will lay foundations for 50 years’ time, not 5 years’.

Means: working in partnership and across boundaries

The disability movement must continue to have the relevance and success that has led to the changes of the last 30 years.

We feel there is limited awareness that the field of disability has been a major driver and innovator when it comes to public service reform. To take just one example: Direct Payments and personalisation are the direct results of work done by disabled people and their organisations that has led to significant swathes of public service reform. The Right to Control is literally Trailblazing a similar path.

Such changes as are happening to public services now – including the continued transformation of adult social care, health reform, the shift in power to the most local level possible, and creating a partnership between the individual and the state rather than the state doing everyone on behalf of an individual – are ones that disabled people should again fundamentally contribute to and drive.

For this to happen, the disability movement should broaden its horizon to think not just about disability questions by themselves but to contribute to national debates and developments – forging strategic alliances with relevant organisations, becoming expert advisers and partners to a range of other sectors, including (but not limited to) government at a central and local level.

This builds on the notion that the disability movement alone can’t secure the reform or redistribution needed to promulgate disability equality in the wider public sector and society as a whole. It suggests the disability movement can’t afford to operate in a disability silo nor afford time to retreat back to theoretical questions of 'identity' alone if it is to be successful in meeting the challenges ahead.

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Means: an ‘all or nothing’ Campaigning approach?

Campaigning clearly has its place in a democratic society. We sometimes wonder whether the way in which this Campaigning (note – big ‘C’) happens is useful.

Let us take two very difficult, but very current and controversial examples of present or potential government policy: welfare reform and assisted dying. What is clear in both of these cases is that, if the disability movement takes a purely oppositionalist and adversarial approach to these intentions – especially when accompanied by no alternative solution other than the status quo – then the final result is likely to be much worse overall for disabled people. Instead – whilst recognising the broad direction of travel – we need to work with legislators and officials to enable them to understand the impact such policies would have on disabled people and support them to mitigate or minimise these effects.

As such, we advocate that it cannot be an ‘all or nothing approach’ to promoting disability equality but one in which we, as disabled people and disabled people’s organisations, must work in partnership with other organisations (including at all levels of government) to achieve better outcomes for everyone, including disabled people.

To what end?

Even if the means of Campaigning, for example, were right, what about the ends that such an approach seeks to achieve?

Contemporary views of the modern welfare state are illustrative. Such views often appear – or are – contradictory, as captured by a well-known disability campaigner:

It is perhaps ironic that many of us spent the 1970s criticising the welfare state, only to find that these arguments were built upon and taken much further by a government determined to reduce state expenditure. Consequently we spent the 1980s defending what we had previously attacked. In sum, we defended the indefensible[.]iii

Similarly, some people argue that disabled people should be ‘left alone’ by the state when it comes to reforms, calling upon issues of ‘sickness’ or ‘vulnerability’ by way of justification. To take one manifestation of this: regarding employment, some people ask that whole groups of disabled people are deemed de facto unfit to work because of their impairment or long-term health condition – the sort of a priori judgment that would rightly be considered discrimination.

Such views – from our perspective – contribute to a lingering sense of disabled people as recipients of charity, or people who should be left alone and looked after / protected by the state. They don’t tally with ecdp’s views of the sort of society disabled people should be an equal part of; nor do they tally with prevailing views in the ways issues like disability hate crime, for example, are being successfully addressed.

Thus, to answer our own question: what will be enough?

We believe government should operate, and all citizens be encouraged to behave, such that disabled people have the support required and same access to opportunities as non-disabled people to participate fully as equal citizens.

A fundamental building block of this is an enabling state – one which isn’t just a safety net, but one that provides a positive platform for disabled people to achieve their greater goals. This requires a ‘welfare’ state, in the broadest sense of the term ‘welfare’.

Jenny Morris has put it most eloquently, most recently, building on a history of such thinking in the disability movement:

In order to experience equal access to full citizenship, disabled people therefore require some kind of collective and redistributive mechanism to provide the

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additional requirements needed. Moreover, such redistribution needs to be in the context of a value system which values diversity and where disabled people are treated as belonging and contributing to the communities in which they live.iv

For us, such an enabling state would have the following sorts of characteristics: It must be recognised that the state isn’t just about questions of welfare benefits, or social care

entitlements, or free transport passes or blue badges. It is about providing an equal platform for disabled people to make their own contribution

We wish for a system – whether in principle or in practice – in which all different entitlements and support are drawn together around the individual. Fulfilling Potential is an opportunity to look at an individual first and to see how all of the different and complex systems (and their associated bureaucracies) interact to make things happen or get in the way. We wish for the opportunity to take Right to Control to its logical conclusion across all public provision

Such a system would be coproduced: its design would be done with disabled people, decisions made about it done with disabled people, its delivery would be done with and through disabled people, and its review would be carried out with disabled people.

Such an enabling state would be one that works in partnership with an individual, rather than does things unto them. To do this, it must: Recognise disabled people are experts in their own lives Offer as much choice and control as possible to disabled people at as many junctures as possible Recognise, develop and utilise the capabilities of disabled people.

Disabled People’s User-Led Organisations (like ecdp) clearly have a role to play in such an enabling state. We have set out what we think that role is, and how we think it can be delivered, in our substantial answer to question 11 in Section 3.

Section 2, however, shares the views and lived experiences of our members and disabled people across Essex, who have identified ways in which the current system does and doesn’t work, and suggested what the enabling state could look like, and ways that it can be achieved.

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SECTION 2: ECDP RESPONSE

Part 1: Realising Aspirations

We recognise there are many societal barriers which currently prevent disabled people from realising the same aspirations and goals as non-disabled people. Below we discuss what some of those barriers are. We also share suggestions disabled people have for tackling them to ensure equality of opportunity in education and employment and that disabled people have the same chance to live independently as non-disabled people.

One of the focus groups held during our Fulfilling Potential engagement exercise was specifically focused on finding the views of young disabled people, in recognition of the fact they face particular issues. A number of the group’s participants are currently in education and of, those who were not, the majority are unemployed.

Q1. What ideas do you have that could make a difference to you in getting an education, getting a job or being able to live independently?

Education

We know that in education, 23% of disabled people have no qualifications compared to 9% of non-disabled people demonstrating that considerable barriers remain for young people in education.

In general, our participants felt that progress has been made in ensuring equality of opportunity in education for disabled people. Of those we engaged with, experience of education varied between those of different ages and was generally more positive for younger people, although this was not always the case.

Those individuals who did not have an impairment during their education were aware their disabled peers seemed to have a less positive experience and were treated differently. Indeed, of those disabled people who had an impairment during their time at school, 46% said they felt their experience of education was not as good as their non-disabled peersv.

When I was at school, to be disabled meant you were 100% different – Survey respondent

They treat you differently… they don’t really know who I am – Focus group participant

Mainstream ‘versus’ special schools

Many more of the younger people we consulted with had attended mainstream schools, whereas in many cases, older people had only attended mainstream schools if they had acquired their impairment after leaving school.

I went to a school for Deaf people, but my friend’s Deaf children went to school with everyone else – Focus group participant

Among those who contributed to this work, integrated schooling was favoured among the majority. It was seen to provide a more ‘realistic’ experience for the student, as well as a more equal education. It was felt that negative attitudes towards disabled people could be better tackled through integration and contact with non-disabled people.

During our focus groups, one parent spoke of their child’s mainstream school being merged with a local ‘special needs’ school, resulting in her child being much more aware and accepting of ‘difference and disability’.

However, greatest emphasis was placed on ensuring equality of opportunity regardless of the type of school, whether mainstream or specialist.

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Choice for parents of disabled young people in the education system

Research suggests that choice in the education system does not exist the same way for the parents of pupils with Special Educational Needs (SEN) or children with disabilities as it does for the parents of non-disabled children. Specifically, pupils with SEN / disabilities have been shown to be disproportionately affected by over-subscription criteria. This is especially the case when schools are their own admissions authorities. Furthermore, parents of children with SEN / disabilities are less satisfied with the outcomes and process of choice than the parents of children without SEN / disabilities. This is borne out by in particular by appeals numbers: there are more relevant appeals for pupils with SEN statements than there are for non-statemented children, as a result of admissions decisions made by schools and others.

At a time when structural changes to the provision of education are occurring, with the advent of Free Schools and the expansion of the Academy programme, it is vital that data regarding admissions of children with disabilities and pupils with SEN is closely monitored and reported on.

Physical Access

Physical access issues remain problematic, particularly in schools which had not been used to including disabled people.

In terms of physical access provisions, this often means a lack of ramps or step-free access, especially in older schools:

Mainstream education… was hard as the school was not equipped for a wheelchair user – Survey respondent

Physical access provisions also meant that students were restricted in their choice of academic subjects and in some cases were unable to study alongside their peers:

There were accessibility issues within my comprehensive school so I felt I could have had a better quality education if I didn’t need to decide what subjects to take based on accessibility – Survey respondent

Of those who had progressed on to Further Education, some had attended universities which specifically catered for those with physical impairments. However, not all universities cater for disabled people, restricting the choice of academic institutions available to disabled people:

You don’t come out of university with the same level of independence as peers – Survey respondent

However, physical barriers experienced by those in education were not seen as insurmountable, and people pointed to examples of good practice in schools, including those with less accessible buildings.

Where access barriers were not being addressed, being able to apply the Equality Act (2010) was seen as one possible solution, although many felt this was not taken as seriously as it should be and was often unenforceable.

The continuing existence of these basic physical access barriers demonstrates that, while many believe access barriers are a thing of the past, due in part to legislation such as the Equality Act, the everyday experiences of disabled people suggests this is simply not the case. Of course, it goes without saying that the legislation has represented important progress towards achieving equality, but many very basic problems still prevent disabled people on the ground from fulfilling their potential. Attitudinal barriers

For those with non-physical impairments such as learning disabilities, the greatest barrier experienced was negative or discriminatory attitudes. For these young people, bullying and even disability hate crime – though not always referred to by this name – were a common feature of their everyday lives.

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[I experienced] regular bullying in the form of name calling and intimidation – Survey respondent

Overwhelmingly, young people called for greater education about disability issues within schools to tackle negative misconceptions about disabled people. This suggestion is explored further in Part 3.

It was felt that bullying could be sufficiently addressed with commitment from the school to tackle it. However, challenging ingrained social prejudices was viewed as a longer-term challenge, and one which could be undertaken with the right commitments to educating all students about disability equality.

In terms of more immediate solutions to negative attitudes, some felt that teachers simply needed to be better at challenging bullying and therefore may benefit from training to support them in identifying and addressing this behaviour.

[I experienced] neglectful abuse by school teachers and excessive bullying from classmates (which was not prevented because the teachers didn’t care) – Survey respondent

Teacher’s attitude towards my impairment could have been more empathetic… [this] would have allowed for better outcomes, emotionally and physically – Survey respondent

We feel that the scope of Ofsted’s framework for the inspection of local authority arrangements to protect children should be widened to include a clear disability agenda, to ensure schools are robustly assessed on their ability to prevent bullying and less favourable treatment of disabled young people (and indeed young people more generally). Poor performing schools should be identified and encouraged to improve their policies and practices.

Other suggestions for ensuring disabled people did not experience negative treatment or isolation in school included ‘buddy’ schemes, or peer support within schools, which would enable disabled students to share their lived experience and provide mutual support to each other within the wider context of integrated education with non-disabled students.

Employment

The [employment] system is not very good at making reasonable adjustments. This world is designed for non-disabled people… – Survey respondent

48% of disabled people are in employment, compared to 79% of non-disabled people (both 2008 figures). The people ecdp worked with throughout this engagement exercise want to work and were offended by the misconception held by some that this was not the case.

Some 83% of those who completed ecdp’s Fulfilling Potential survey felt that it had been more difficult to find and maintain employment than it would have been for a non-disabled person. As such our focus group discussions focused on the barriers people continued to face when looking for and

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Disabled parents

Through our engagement work with disabled people, it became evident that disabled parents are sometimes treated less favourably than non-disabled parents when accessing their children’s school.

The physical access barriers which affected disabled students as discussed above also affect disabled parents who may need to attend the school for meetings such as parents evenings or social events/school plays. Physical barriers may also include inaccessible information for parents, for example, schools not providing audio versions of school newsletters or Braille school reports. Likewise poor attitudes towards disabled students can also be experienced by parents.

Any work which is undertaken to address the poor experiences of disabled young people in school settings should equally be extended to disabled parents.


maintaining employment and some possible solutions.

We discussed the specific support available to disabled people to ensure they have equal access to jobs, during these difficult economic times. It is worth noting that among those disabled people we worked with, young disabled people felt they were at a particular disadvantage when leaving school:

I would feel happy if I got a job. There are not a lot of jobs around at the moment for people with or without disabilities. I hope in the future there will be a lot more jobs for disabled people because its hard at the moment to get paid jobs – Focus group participant

Looking at an individuals’ employment ‘journey’ suggests barriers are experienced at a number of points throughout the employment process.

Experience of JobCentre Plus and Disability Employment Advisers

Many people reported negative experiences of using JobCentre Plus (JCP) and specifically a lack of understanding from the Disability Employment Advisors (DEAs) based there. ecdp's third focus group unanimously agreed that JCP was difficult to use and inaccessible for some disabled people who needed to use them.

Better support from DEAs… [would improve my experience] – Survey respondent

Disabled people felt they would rather work with a DEA with direct lived experience, but at a minimum they would expect advisors to have disability equality training.

[My experience would be improved by] a good advisor at JobCentre Plus, who I felt understood my requirements when trying to find employment – Survey respondent

Unfortunately for some, this was not always the case. This often led to negative experiences of extra hurdles being created by the DEA or of not being taken seriously. For example, a disabled woman accessing services at JCP was given wholly inappropriate advice by her DEA instead of being encouraged to find employment:

The Disability Employment Advisor at the Job Centre said “why don’t you just get married?” – Survey respondent

Given the DEA specialist role within the Job Centre, it is important that their attitude towards disabled people is positive and productive, and that individuals within those roles approach disability from a social model perspective. This is explored further in Part 3.

A positive and productive attitude is especially important at a time when disabled people are facing a difficult job market and negative press around benefits and unemployment. Ensuring a quality service for disabled people at JCP should be a clear and monitored outcome for DEAs, built into their job description and objectives and reinforced through regular training.

During ecdp’s previous work on Access to Work and specialist disability employment support, we found that only 10% of individuals heard about Access to Work support through JCP. A third of survey respondents were informed of potential support from their employer or a colleague and 28% learned of Access to Work from a disabled people’s organisation.

Not only does this suggest that disabled people are not accessing support through DEAs and JCPs, but more importantly, that peer-led approaches around employment advice have resulted in people ultimately achieving the support which has enabled them to work.

Employer attitudes

Within the work place, individuals’ experiences of employment are highly dependent on the employer. For some, this means they are unable to get over the initial hurdle of an interview, which many feel they will not if they disclose their impairment or it is visible to the employer. For others, negative workplace attitudes – particularly for those individuals who had recently acquired an

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impairment – meant they either left or lost their job, even when their impairment had no direct impact on their ability to work.

If I list my disability on a job application form, I never get asked for an interview – Survey respondent

It is difficult to find an employer who understands my requirements for reasonable adjustments – Survey respondent

To address this, it was suggested that training employers in disability equality should be part of the ‘equal opportunity employers’ standard. At a higher level, those organisations which support employers and businesses, such as Business Link and CBI, should be reinforcing the importance of disability equality to their members.

Ensure employers have been through appropriate training before they advertise that they are an equal opps employer – Survey respondent

Educating employers on DET and support that is available to them to enable their workforce – Survey respondent

Practical support through Access to Work

Looking past negative attitudes, which are addressed more broadly in Part 3, the biggest barrier to employment is a lack of practical support both when looking for and maintaining a job.

Access to Work supports individuals to overcome workplace barriers by providing personalised support for the person. Previous research carried out by ecdp found that Access to Work is essential to those who use it. 83% of ecdp’s Access to Work survey respondents said they could not work without the support that Access to Work provides, with a further 12% saying that they could work but it would be more difficult for them to do so without Access to Work.

Access to work enables me to work. Full stop – Survey respondent

Not only does Access to Work support disabled people to obtain and stay in employment and improve their own individual life chances and quality of life, but it also provides a net gain to the Government in terms of tax and National Insurance revenues; approximately £1.48 for every £1 invested.

It is important that Access to Work is offered to all people who could benefit from it. It is worrying to note the present trend for the number of people using Access to Work is falling rather than rising. We would like to see the Government not just reverse this trend, but significantly extend Access to Work.

People have mixed experiences of using Access to Work. Key to the process being a positive one for individuals is good communication all the way through the service, from the initial information about what might be available to the assessment, use of support and review.

When I began to look for work I was not aware of AtW. If I had known about AtW I would have been working a lot sooner – Survey respondent

Some felt the level of transparency around what might be covered should be increased, so people do not go to interviews without knowing what help might be available to them.

It would help to know before interview what help I might be able to get, rather than having to wait until a definite offer of employment is made. It’s no good to sit in an interview situation and say: “Well, if I’m lucky, I might be able to get XYZ to enable me to work effectively… offer me the job on the off chance” – Survey respondent

[I’d improve] transparency about what the service will and won’t provide – Survey respondent

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Access to Work also supports individuals to do their job efficiently and to carry out their work on an equal basis with their non-disabled colleagues. This was particularly important for those who knew they could do their job but might have been prevented from doing so without the correct support.

It is a great facility to enable disabled people to access work on an equal scale to colleagues. It gives you the confidence to work without the worry of impairment issues inhibiting efficiency – Survey respondent

Without [Access to Work] I would not attain the status that I am enjoying on equal par with my peers – Survey respondent

With an understanding that Access to Work plays such an important role for people, it is essential that this is communicated, not only to potential users but also employers to ensure their concerns around the extra costs of employing a disabled person can be addressed and they can meet their obligations to provide support.

[It would help] if employers understood more about Access to Work or other support available – Survey respondent

Give people more power to insist on the employers fulfilling their responsibly – Survey respondent

Enable [Access to Work] to force employers to play ball – my current employer tried their best to get out of making their 25% contribution – Survey respondent

As with all services, it is important that Access to Work policy is reflected by service user’s experiences in reality. Situations where this does not happen can lead to services working badly for the individual and preventing them from having choice and control over how they use them.

A recent example of this was a change to Access to Work policy on paying Personal Assistants who drove their own cars. ecdp worked with Department of Work and Pensions and Department for Transport to establish the cause of the change, which was subsequently reversed following it being highlighted.

Although this situation was resolved, the effect was disruptive for those who used this support and potentially meant that anyone who accessed the service during this period may not have been able to use support appropriate to them.

DPULOs currently play a vital role providing information, advice and guidance, to empower individuals to navigate complex services, most notably social care services. We feel DPULOs could play a further role in supporting people to navigate similar services in employment. An example of this would be offering direct support to ensure an individual receives Access to Work when starting a new role where reasonable adjustments are required.

Personal Budgets and Direct Payments for employment support

Given the importance disabled people place on being able to work on an equal basis with non-disabled peers, ecdp welcomed one of the main recommendations of the Sayce Review, which suggested there should be a focus on funding individual disabled people in their chosen jobs, rather than on funding specific institutions. We were pleased to see Government accept this recommendation, and would like to see the provision of Personal Budgets and Direct Payments for employment services significantly scaled up.

Independent Living

What does independent living mean to me? What it means is, basically, it is my life, my work, what I do every day of my life, and the fact that I am able to do that through the support of others like the personal assistant sitting next to me is immense. It is very hard I think to get that message across to people who perhaps are not dependent on others to support them in their day-to-day living. But it has provided me with a life, my work – I have worked widely –

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and the opportunities and the choices to do the things I want, like you do. I think with the restrictions somebody like myself has, with the kind of severe impairment I have, it is freedom. It is the freedom for me to be able to do what I want to do, when I want to do it[.] – John Evans, OBEvi

Living independently means different things to different people and can mean accessing different services and facilities in order to do so. Whatever services people need to use in order to live as independently as possible, having choice and control over how they work – and how the services work in combination with each other – is very important.

For example, during our engagement exercise, participants stressed the importance of being at the centre of decisions about the support they received. It was felt that professionals should be better able to support people making choices rather than making decisions for them.

[There should be] a better holistic understanding from professionals about what independent living means to a disabled person – Survey respondent

This includes having an awareness of the expertise disabled people acquire through having lived experience and taking the time to listen to their views:

Being treated as an equal as opposed to someone who needs support. People taking the time to realise that I have views… – Survey respondent

It was also felt that services which are most valued by disabled people are often not specialist, but support them to do everyday tasks:

Having support to do daily things non-disabled people take for granted, like having a shower, washing my clothes, going shopping, help with housework and finances [enables me to live independently] – Survey respondent

This reflects findings from ecdp’s joint longitudinal study with the Office for Public Management on holders of Personal Budgets. The interim findings from the study’s second year found that Personal Budgets act as a platform for service users from which a wide range of positive outcomes that support independent living can be achieved. These include accessing high quality and more tailored services, an increased sense of control, attaining improved emotional well-bring, an increased sense of dignity, and a stronger sense of self through social interaction and improved family relationships.

Legislating for Independent Living?

The Joint Committee on Human Rights (JCHR) has recently published its report on the implementation of the right of disabled people to independent livingvii. The report draws attention to a number of issues including the need for freestanding legislation to protect the right to independent living in UK law.

We are persuaded of this argument, but also strongly think that existing legislation must be used effectively and as intended to ensure change is reflected in disabled people’s everyday lives. The monitoring arrangements for the Disability Strategy could provide a practical bridge in capturing and sharing such changes. Factors that can support and increase Independent Living are also discussed in Part 2 of this report. Q2. What would help you manage better at times of change in your life?

Q3. In those situations, how are you supported or held back by other people?

During periods of change or transition – whether a change in health, accommodation or anything else – consistency in services, support and access to funding, is essential.

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Some examples of transitions disabled people spoke about during ecdp’s Fulfilling Potential engagement are included below. While these do not represent an exhaustive list, they demonstrate some of the issues disabled people may face during periods of change.

Change in health or condition

When changes occur in an individual’s health or condition, a delay in getting support can cause things to deteriorate further for the individual. The original proposal to extend the qualifying period for Personal Independence Payment from three to six months highlighted the problems many had had while waiting to claim Disability Living Allowance

[I]n the intervening period of three/four months I had been forced to arrange a lease on a car to allow me to get about as I was living in a rural area – Survey respondent

[I faced] poverty due to being unable to work – Survey respondent

I struggled to pay for the things I needed to keep on top of my disability – Survey respondent

These examples demonstrate that gaps in funding or delays in access to funding can have negative consequences for the individual in terms of physical and mental health and can in turn put pressures on other services, such as the NHS. We were encouraged to hear the Government reconsider the original proposal.

It was clear that through our Fulfilling Potential engagement exercise there was a resounding feeling that social care and health services are particularly inconsistent because there is often no dedicated worker appointed to an individual’s case. Having to constantly re-explain the situation is distressing for the individual but also wastes time for the provider and creates unnecessary delays. The engagement process highlighted the need for consistent relationships between service users and service providers.

Greater consistency of service leads to reduced bureaucracy and in turn reduced costs which would improve the experience for the individual and result in a win-win situation for the disabled population and service providers.

Moving house

Moving house is considered one of the most stressful life experiences any individual can go through. However, for disabled people this stress is compounded by additional barriers. This is especially the case when moving from one local authority area to another, because of the disruption to people’s care and support.

This is additional to the access barriers disabled people can face in finding accommodation in the first place:

[There should be] a bigger selection of accessible accommodation so that choice and control over where a person lives is based on the area and surrounding amenities rather than the accessibility issues surrounding the property – Survey respondent

The house I moved to last year was not fully accessible for me, and I didn’t realise I wouldn’t be able to access a Disabled Facilities Grant because both my husband and I are employed – Focus group participant

Combined with these barriers described above, renegotiating a support package with a new local authority and having no guarantee the same support will be provided in the new area can stop disabled people having the same freedom to move house as other people.

ecdp welcomed the Social Care Portability Billviii which was introduced in the House of Lords last summer and provided for the possibility that when disabled people move from one local authority to another, their care and support will be ‘portable’ and so effectively move with them. Government

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should revisit the Social Care Portability Bill through the Disability Strategy, perhaps reflecting it in the Social Care White Paper due this summer.

Again, DPULOs could play a role in supporting disabled people through this process by ensuring joined-up services across county lines.

Moving services

As noted above, during all changes disabled people might experience, it is important the services which provide support are as consistent as possible to minimise the problems people experience during times of transition.

However, where the change relates to a service itself – for example, when young disabled people move from Children’s to Adult Social Care services – this can be more difficult. High among the problems caused by this were ‘gaps’ in funding for care, where one source of support stops before another is in place, effectively leaving people without the support they need.

The primary suggestion for minimising the impact of this transition was good communication, and where possible, communication via a dedicated case worker, so individuals could establish a strong relationship with one contact who understands their situation.

Where two or more services are required to work in partnership or parallel, problems are more frequent and service users report feeling as though they are ‘falling through the gaps’. To overcome these problems, disabled people felt that using centralised advice and guidance, from a single source, enables people to join up separate services and get the most out of the support available to them.

The provision of these types of Information, Advice and Guidance (IAG) services by DPULOs enables service users to access this type of joined up support, run by peers with lived experience. The benefits of peer-led IAG are explored in greater detail below.

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Part 2: Individual Control

Independent living and personal control, delivered through personalised services, have begun to revolutionise social care services for some disabled and older people. Personal Budgets, including Direct Payments, are designed to put the control back in to the hands of disabled person, allowing them to buy their own support and manage it in a way that suits them.

However, Direct Payments are only part of the solution to personalising services. Personalisation needs to be considered within a wider context because having control over one’s life means having control over all services accessed, whether these are related to meeting care needs or other requirements.

Disabled people who took part in ecdp’s engagement exercise did not talk solely about care, but about areas such as transport, employment and being able to access the community in order to contribute through activities such as volunteering.

As noted above, the relationship between services and how they interact is key to ensuring disabled people are supported holistically. As such, ecdp believes the conversation around individual control needs to be broadened to include all policy areas which impact on an individual’s life.

ecdp believes the principles of personalisation create the right platform for disabled people to fulfil their potential and contribute to the community more widely. During our engagement exercise, the individuals we worked with were clear that personalisation was the vehicle for greater inclusion and participation of disabled people.

The questions below are to some degree similar and so we have answered them collectively.

Q4. What helps you to have choice and control over your day-to-day life?

Q5. What else would help you to have more choice and control over your day-to-day life and the support you get?

Q6. What would help you to access services and activities which suit your needs?

Choice and control

It is often a combination of things which allow disabled people to have choice and control over their lives. This might include welfare support, social and health services, community, peer and informal support.

Though not all disabled people require any or all of these services, when they are used it is essential that they work together, and do so around the individual.

My support should be the support I choose – Focus group participant

Below we capture some of the obstacles our Fulfilling Potential engagement participants highlighted in seeking to have choice and control.

Inflexible and bureaucratic systems

Disabled people access support from a variety of sources and funding streams and use it in different ways to give them choice and control. However, disabled people we have engaged want the system to work for them rather than having to work around inflexible systems.

An example given by participants was of welfare support, which in all its forms plays an important part in the lives of many disabled people. However, a number of individuals felt the welfare system prevented them from taking full control of their lives:

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Every service I have used makes it more difficult to have choice or control. If you try and do something for yourself you risk losing benefits or being investigated – Survey respondent

I have felt as though my life was controlled by the DWP and NHS. Both have made my life far more difficult than necessary. Keeping them at arms length as much as possible has given me more control in my life – Survey respondent

The benefits system is inflexible and bureaucratic in every possible way. It is not user friendly – Focus group participant

However, individuals acknowledge the support the system provides is nevertheless essential in providing independence, and so addressing the inflexibility and bureaucracy which can create barriers for people would enable the system to better support this outcome.

Without my DLA I would lose my adapted car, my independence and my job. DLA supports me to contribute because it enables me to work full time – Survey respondent

I could not manage without DLA… without this I would cost the NHS a fortune – Survey respondent

Practical solutions to such bureaucracies are ones that have been wished for since time immemorial, including sharing information once and short(er) application forms.

More self-assessment

As one means of overcoming bureaucratic and inflexible systems, we would like to see more consideration given to the role of self-assessment in public services. Self-assessment within social care (with its considerable public budget) is becoming further established and evidence suggests that it leads to both better outcomes for service usersix and better use of public resourcex. As such, we would like to see this provided for in both assessments and reviews in public services more generally.

Communications

Choice and control can only be exercised if people know the choices available to them. Unfortunately, information, advice and guidance regarding increased choices available to disabled people are not always clearly communicated or promoted. Even if they are, mechanisms that may be considered to work for the general population may not work for disabled people. For example, we know disabled people are far less likely to have used the internet. Indeed, nearly half of all adults who have never used the internet are disabled people.

Further manifestations of communications and information problems include: When people are able to access the services they require, not all options available are

communicated to them. For example, some of the disabled people we engaged with were unaware they could be eligible for a Direct Payment or had not been offered different options for creating their support plans

Many disabled people we engaged with have also faced problems specifically relating to the way services communicate with them and with other services they use. For example, information can be duplicated or not received at all and as a result people feel that they might ‘fall through the gaps’

Advocacy services, working with or on behalf of disabled people, can go some way to addressing such issues by opening doors to otherwise inaccessible services. But such services are often oversubscribed and/or underfunded.

Peer support

Through peer support, disabled people can be supported by others with lived experience to navigate the complex system of services. This approach gives the service user a centralised and consistent

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point of contact who understands the system from direct experience and can inform, advise and guide the individual to ensure they get the most out of services they need to live independently.

Furthermore, peer support enables disabled people to use their lived experience to engage with other disabled people, their communities and the issues which affect them at a national and local level. This is beneficial not only to the recipient of the support, but also the peer providing it – enabling routes ultimately into community involvement or employment.

DPULOs have a role to play in addressing the issues associated with individual control outlined above. This includes through service provision (such as information, advice and guidance services), and through facilitating peer support.

ecdp has demonstrated the effectiveness of peer led approaches in increasing choice and control through increased uptake of Direct Payments (DP). 89% of people in Essex who receive information, advice or guidance from a disabled peer take up a DP, compared to 13% nationally. Similarly, 100% of people who have developed or reviewed their health/social care plan with a peer took up a DP, compared to 17% locally.

ecdp’s engagement exercise to inform this response was in itself a good example of peer support in action: many disabled people worked together and offered peer support to other participants, demonstrating some of the benefits of peer support and how it can be applied.

Working together makes you realise you are not the only one in this situation. Other people have good ideas which can help – Focus group participant

Right to Control

The Right to Control represents a potentially exciting glimpse of what public services could look like if personalised approaches – focused on the individual, rather than the service – become the norm.

ecdp supports the Government’s Right to Control legislation, which gives disabled people the information, advice and guidance they need as a legal right to know up-front how much money is available to pay for the range of support they need from across a variety of funding streams.

Right to Control is about disabled people identifying their needs and discussing how agreed outcomes can best be met by bringing together funding streams from more than one agency and accessing this through a central point.

As a service user and someone with impairments that have lasted many years, I welcome RtC as another step forward in the long campaign to ensure we have genuine choice and control – Right to Control reference group member

Essex is one of seven Trailblazer sites for the Right to Control. Early evidence suggests Right to Control is having a positive impact for its users. For example, those who have sought support from a Disability Employment Advisor have been directed to and supported through a number of other services identified as relevant and useful to them, not purely related to employment, using the mechanism of a Direct Payment.

In order to address issues related to services not working well in partnership, ecdp members support a full range of funding streams and services to be included in the Right to Control programme. This should reach as far as possible across all policy areas. In addition to the funding streams currently included within the Right to Control, we believe that the following should be considered for inclusion in any extension to further funding streams: All specialist disability employment programmes Disabled Students’ Allowance Continuing Health Care Personal Health Budgets Children’s Individual Budgets Transport service budgets.

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Shaping the supply side

We have often reflected that reforms relating to disability benefits or other sources of state support focus on the demand-side of the equation, i.e. the requirements of the individual. We take the view that this can only therefore be one part of the solution.

However, amongst other areas (e.g. employment, transport and housing) we feel there is considerable room to influence, shape and drive down the additional costs relating to disability on the supply-side of the market.

For example, provision within the social care market in response to the personalisation agenda and Personal Budgets / Direct Payments is relatively slow. However, significant market-shaping work continues to accelerate, and learning from this is available that could benefit wider provision of goods and services beyond social care and health settings.

We thus feel there is a significant opportunity to be taken up to do more market-shaping work that can both drive down costs relating to disability on the supply-side and potentially stimulate an increase in disability-related business activity.

Q7. How can you be involved in decisions that affect your local area?

There are several ways in which the voice of disabled people can be captured, aggregated and represented in relation to decisions that affect a local area. The best way to capture this is through demonstrating the work we do at ecdp, as an example of the work of many DPULOs across the country.

ecdp works with disabled people in Essex on a daily basis to ensure their lived experience is collected and aggregated in order to form a collective voice.

In practice this involves employing a number of mechanisms to harvest the information shared with ecdp. Starting from the position of a trusted organisation with an established relationship with disabled people in Essex, we are in a good position to communicate and work with our members.

When disabled people share their lived experience with ecdp through their day-to-day communications with us, they are recorded in a lived experience log, enabling us to monitor trends and observe the issues which are affecting disabled people. Through this log, we have been alerted to some of the problems disabled people have faced and been able to address them by liaising with colleagues at all levels of Government.

ecdp also works with disabled people to ensure their voice is heard by commissioners and service providers around a number of issues, including but not purely related to, health and social care.

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Essex Community Budgets pilot

The principles behind the Right to Control have most recently been espoused in the Community Budgets pilots. ecdp has welcomed these four pilots, of which Essex is one and in which ecdp is engaged.

The move towards communities setting the priorities for their own areas and driving efficiency savings in the process should achieve positive outcomes for those within communities, including disabled people.

Disabled people are particularly affected by some of the issues that Community Budgets are designed to address, for example: uncoordinated funding streams at a local level and a lack of early interventions and a reliance on reactive approaches. Greater integration of services – driven (in parth) through the Community Budgets pilots – will ensure disabled people can access the variety of support they need in a more coherent way, as well as enable providers to make savings which can in turn be put back into services.


HealthWatch, for example, presents a significant opportunity for disabled people to use their lived experience to shape policy which affects them as users of health and social care, as well as enabling them to hold commissioners to account in the longer term. The establishment of equivalent structures or scrutiny / reference groups in other policy areas – particularly employment and welfare – would be welcomed.

As a Right to Control Trailblazer, ecdp has established a user reference group, SURGE, which reports to the Right to Control board and represents the wider views of those who will be using the Right to Control.

Other methods, including focus groups, surveys and interviews are employed where appropriate to inform all of ecdp’s work, drawing on the relevant lived experience of members.

Using lived experience in a variety of flexible ways not only means disabled people can have a say on the issues which affect them to influence relevant decision makers, but also enables ecdp to respond to external bodies, including the Government, Local Authority and a variety of other service providers in an informed and collective manner.

Three factors underpin the involvement of disabled people in decisions that affect their local area: The provision of involvement infrastructure – such as DPULOs – that provide the opportunity for

disabled people to share their views and have them captured and represented Commissioners who are willing to – and can see the value of – working in coproduction with

disabled people in their local area The existence of legislative or regulatory levers (such as HealthWatch) that encourage or require

the involvement of disabled people in local decision making.

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Part 3: Changing attitudes and behaviours Q8. What works well in changing the way other people treat disabled people

Disabled people we worked with generally felt they were treated less favourably than others. While there was a general recognition of progress being made in particular areas, 40% of survey respondents still felt that attitudes towards disabled people had worsened over the last 10 years.

Training and education

The importance of training and education to ensure people understand disability was repeatedly emphasised throughout our Fulfilling Potential engagement work. In every area of individuals’ lives they faced barriers related to negative attitudes; whether this was the attitudes of school children or of service providers, from bus drivers to nurses and a prevalent suggestion for tackling this was disability equality training for professionals, and for young people in schools. This is developed further in the disability hate crime section below.

Media

Many disabled people feel the media are playing an increasingly important role in the representation of disabled people. They often felt this representation is – unfairly – negative and focused on benefit fraud.

Have you read the papers lately? Watched the TV, with that awful Saints and Scroungers programme… Disabled people are being portrayed as thieves, cheats… who will stop at nothing to ‘fiddle the system’. Disabled people are being denigrated in the street by strangers who have decided we are ‘not disabled enough’ or that we ‘don’t look disabled’ – Survey respondent

[The] press paints us as lying scroungers – Survey respondent

Disabled people suggest the media should be held accountable for statements which suggest that many benefit claimants are wrongly using support, which in reality is vital to its recipients and in many cases enables them to work and contribute into the system.

Suggestions were made about the ways in which the media can – and some felt already does – promote the contribution of disabled people and in doing so, create acceptance and encourage more disabled people to contribute to society.

Celebration of achievement in the media… raise[s] the profile of disabled people in a positive way – Survey respondent

The level of understanding and the amount of information available to society as a whole means that people are generally better informed, but attitudes are generally the same… society has become better informed [and] our expectations of what is available / attainable have shifted – Survey respondent

As well as visibility in the media, disabled people note that having a greater presence in society more generally, in part due to greater accessibility and greater support to access the community where needed, has also created a shift in attitudes.

Attitudes have improved because disabled people have more choice and control over their lives; e.g. employment and education. Society in general recognises disabled people more and their positive impact on the community – Survey respondent

On an individual basis, disabled people see that with this greater presence, they have their own role to play in ensuring equal access and encouraging positive perceptions. This may be through using their lived experience to support others or simply encouraging good practice:

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Understanding

Signposting and Support

Education

Reporting


It is important to tell people when they get it right [for disabled people], not just when they get it wrong – Focus group participant

Disabled people should carry on being positive role models… and should be able to access the services which maintain their choice and control. Disabled people can then be seen as an equal member of their community and society as a whole – Survey respondent

Trust

The fraud rate for Disability Living Allowance is 0.5%– lower than DWP’s administrative error rate for the same benefit. This fraud rate is lower than almost all other benefits for both disabled and non-disabled people.

As discussed above disabled people resent, therefore, the assertion in the media that a majority of recipients are not using their benefit appropriately or misrepresenting their circumstances in order to claim benefits they are not entitled to.

This creates an environment of distrust and misunderstanding, which is helpful neither for disabled people nor elected representatives or senior public officials. It is important that this is addressed both by Government, who should be continuing to build a relationship of trust with disabled people and working to ensure that the disabled community is properly and fairly represented, and by disabled people themselves, through building constructive and challenging, but fair, relationships with Government.

Q9. What else is important in changing the way other people treat disabled people?

Disability hate crime is an issue which affects many disabled people. As well as being an important and serious issue in itself, disability hate crime also acts a proxy for the wider ways in which disabled people are treated. We therefore consider the topic in detail below.

Disability hate crime

Though progress in addressing disability hate crime, as well as bullying and harassment, has been made in some areas, many disabled people still face disability hate crime in their everyday lives and at a rate which is not acceptable and not reflected by crime statistics. Of course, even ‘less serious’ crimes, accepted as part of everyday life by some disabled people, prevent victims fulfilling their full potential and playing active roles in their community.

It didn't feel like a serious enough incident to do anything about it – Survey respondent

I now do not leave my house alone. I walk everywhere I have to now so as not to give youngsters the reason to start. I do not go out in the dark – Survey respondent

[I have tried to stop this happening by] avoiding the town centre and crowded areas, especially where youngsters get together – Survey respondent

ecdp has previously undertaken work to understand disability hate crime and its impact on disabled people. Through this co-produced research, ecdp identified four key areas which need to be taken forward in order to tackle, prevent and address hate crime. The USER framework represents these four areas: understanding, signposting and support, education and reporting.

There needs to be a greater understanding of disability hate crime, both on the part of disabled people, who do not always realise they are the victims and of the professionals with a responsibility to address disability hate crime and support victims.

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There needs to be a strong set of services which signpost and support disabled people when they are victims of hate crime. These should be widely available and well coordinated. Many professionals do not currently know how to support someone who has been a victim of disability hate crime:

I don’t know what services are available or what they do once I signpost to them – Disability Hate Crime professionals focus group

To ensure wider change for disabled people, we believe education work should be focused on three particular groups of stakeholders: disabled people themselves, professionals and wider society.

We need education from a young age. Then the children can challenge the attitudes of the parents – Focus group participant

Finally, processes for reporting need to be strengthened to increase the number of investigated and prosecuted cases. It is widely recognised that current crime statistics do not represent the situation of disability hate crime within our society and while people must be given the choice as to whether they report crimes, the process should be accessible and supportive when they do.

Our research also found that in accessing all of the above services, disabled people prefer to obtain support via peers and, most importantly, independently from services such as the police. As such, ecdp’s primary recommendation was that a disabled people’s user-led organisation, is best placed to work in partnership with organisations that have responsibility for hate crime – including local police – to address the above four areas.

While our research focused particularly on Essex, similar trends and issues can be seen across the country. As such, the model suggested by ecdp is transferable and applicable elsewhere. Indeed the Equality and Human Rights Commission (EHRC) published a national report which drew very similar conclusions:

For many disabled people in Britain, safety and security is a right frequently denied. Violence and hostility can be a daily experience - in the street, on public transport, at work, at home, on the web - so much so that many disabled people begin to accept it as a part of everyday life. Disabled people - including those who have not experienced such behaviours directly - are all too often forced to go to extraordinary lengths to avoid it, thereby limiting their own lives.xi

Identity and multiple disadvantage

Debates about ‘identity’ are not ecdp’s speciality. But in our work with disabled people in Essex and beyond we are constantly reminded of one very difficult fact: approximately 50% of all people who would be considered a ‘disabled person’ under the law don’t consider themselves to be disabled. This includes people across all impairment groups and across many long-term health conditions.

In approaching this fundamental obstacle to delivering disability equality, and in taking forward any strategy around disability, it is essential that the work is approached from the Social Model of Disability. Namely, that the barriers disabled people face are related to the society we live in and not the individual’s impairment.

Beyond this, many are starting to recognise that disabled people are not a homogenous group. The 1 in 5 of the population who have rights under disability law form a very diverse community which includes people from a variety of backgrounds. It should further be recognised that disabled people who face various disadvantages may be further marginalised because they belong to another disadvantaged social group. Indeed, 35% of ecdp’s survey respondents felt they had faced particular disadvantage because of being part of another group:

I am a disabled woman in a relationship with another woman – a triple whammy… – Survey respondent

I am a disabled, multi-racial woman. I couldn’t be any more disadvantaged if I tried – Survey respondent

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However, some also felt that other minority groups or equality ‘strands’ had made more progress around equality and left disabled people behind in terms of progress. One example given was that of the landmark shifts in policing created by the murder and subsequent mishandling of the death of Stephen Lawrence by the Metropolitan Police. People did not feel they had seen the same changes following the deaths of Fiona Pilkington and Francecca Hardwick after months as the victims of disability hate crime.

In some ways there is improvement… In other ways they’ve worsened… People avoid the disability word… Stereotypes are much stronger – Survey respondent

It is important that disability groups learn from the progress made by other groups, for example those representing people from black and ethnic minority communities, and work in partnership with them to ensure that those who face multiple barriers because of their identity are supported holistically to overcome them.

Perhaps unique to disability, in relation to other equality strands, is the fact that not all disabled people will identify themselves as such. This can lead to particular problems when aiming to ensure services reach those who need them or addressing issues which affect them.

Q10. What can we do to make sure that everyone recognises the contribution that disabled people can make?

Legislative and regulatory levers

As highlighted in Question 7, one of the key factors for ensuring disabled people’s voices are heard in decisions that affect their local areas is a strong legislative or regulatory basis for that involvement. The same principle applies in recognising the contribution that disabled people can make more generally.

Specifically, there are concerns that the Public Sector Duties (as contained in the Equality Act 2010) and the Duty to Involve no longer hold any currency in promoting the involvement of disabled people, or in undertaking actions that look to address disproportionate impacts of policy on disabled people. If the commitment to recognising the contribution of disabled people to society is one to be delivered, using existing legislation as it was intended can be a means to achieve this.

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The Paralympic Games as an opportunity?

Disabled people who contributed to ecdp’s Fulfilling Potential engagement exercise felt that the Paralympics Games presented a significant opportunity to demonstrate the achievements and capabilities of disabled athletes. It was hoped that the image of disabled people ‘at the top of their game’, would change negative attitudes of disabled people held by those who didn’t think they could achieve success.

However, there were concerns expressed that aside from this, the legacy of the Paralympics in London were not going to create lasting change for disabled people in Essex.

What about normal disabled people, the ones who are not the elite? Will the Paralympics change things for us? – Focus group participant

The Paralympics is great, but will it result in me getting a job? – Focus group participant

The Government should ensure that the positive coverage of Britain’s elite disabled athletes taking part in the Paralympic Games is fully exhausted for the benefit of all disabled people, and that the mindset the Paralympics instils is extended to all disabled people who, provided with the right resources and support, should be able to achieve their full potential.

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SECTION 3: THE ROLE OF DPULOs

Q11. Do you have any suggestions for how we should implement and monitor the Strategy once it is developed?

[DP]ULOs should be at the forefront in establishing the strategy – Survey respondent

Disabled people need to be included in every step of the process, using [DP]ULOs to advise and work with those implementing it – Survey respondent

Through [disabled people’s] user led organisations who can feed back information to local or central government. Information should be given to disabled people if required regarding the strategy so they are fully informed of what this would mean to them – Survey respondent

Throughout our response so far, we have highlighted issues and solutions from individual disabled people themselves.

In the preamble and throughout this document, we have highlighted that Disabled People’s User-Led Organisations (like ecdp) have a role to play in achieving the enabling state and type of society for disabled people we have discussed. This is something that our participants and respondents also feel should happen, too.

In this section we therefore set out what we think the role of DPULOs is.

DPULOs: the voice-business approach

Before focusing on the role DPULOs can play in achieving the Disability Strategy, it is worth highlighting what is unique about DPULOs.

There is one distinct feature of DPULOs in the work they do: they operate on both the demand side (i.e. providing the individual and collective ‘voice’ of and for the lived experiences of disabled people, carers and people who use support services) and the supply side (i.e. providing services).

The long history of DPULOs means they are familiar with operating on the demand side, their work drawing on campaigning-type activities for which they are often set up. However, the need for sustainability and financial robustness, as well as various policy drivers, places them in a unique position of being able to consider undertaking more ‘business-like’ activities (e.g. providing support services under contract) alongside this voice-based activity. The diagram presents the typical journey a DPULO may take in seeking to find the balance between these dual roles.

In practice, and in areas where they exist, the need to establish both demand- and supply-side activities and existing arrangements within a locality gives rise to a number of potential operating and delivery models for DPULOs – a variety that is to be welcomed.

In the shift towards levelling the playing field for different types of public service provision – see, for example, the focus on mutuals and social enterprises – we strongly feel that DPULOs should equally benefit from such moves, and can be ‘a part of the mix’ in the public service economy.

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What is the value added by User-Led Organisations?

The value added by DPULOs includes, though is not limited to, the following: DPULOs provide the ‘voice’ of disabled people. Though this can focus on service provision, it also

includes input to equality schemes, access and involvement groups and other less formal forums DPULOs can and do work across more than one policy area – they are more easily able to ‘join

up the dots’ on the ground, responding to the needs of an individual rather than a care-and-support or housing recipient. This can particularly be seen in their central involvement in the current Right to Control Trailblazers

Where services are delivered by DPULOs, they are typically shaped and delivered by service users, meaning they provide a peer-to-peer approach which calls upon direct personal experience

DPULOs are more nimble than statutory agencies – they are informed by the ‘what works’ dynamic and can adjust quicker in response to changing circumstances

To find solutions to individual or collective issues, DPULOs are able to pool creativity, knowledge and experience. This equates to using the ‘lived experience’ of disabled people for the benefit of their peers.

As such, the following outcomes can be offered uniquely by DPULOs, above and beyond any other organisations: DPULOs have legitimacy, both with users and service commissioners DPULOs offer pathways for service users to realise their social capital, be it formally or informally,

and therefore contribute to their local communities DPULOs operate from a values base which encompasses the social model of disability and the

principles of independent living.

The role of DPULOs

There are a number of practical roles – through services, project and functions – that DPULOs can play across both business and voice. These types of practical roles are outlined (not exhaustively) below and can be funded in a variety of ways, including public funding (contracts, service level agreements, public body grant funding), grant and charitable funding, and self-generated income.

The work that DPULOs can do includes: Representing the voice of disabled people locally through:

o Capturing, aggregating and representing the voice of local disabled peopleo Working in partnership and coproduction with commissioners and other stakeholderso Providing the infrastructure for the involvement of disabled people in decision making

Providing a wide range of information, advice and guidance on a number of topics/issues in a variety of different ways and formats

Supporting disabled people through assessment or self-assessment processes for a range of public services for which there are eligibility criteria (such as social care or welfare support)

Providing independent support planning for individuals who need to match their entitlement and assessed “needs” to the outcomes they wish to achieve. This includes:

o Explaining how support planning works and what its benefits areo Enabling and empowering someone to take control of their own support plano Providing support where it is asked foro Supporting the individual involved to ensure their support plan will be accepted by the

approving body Brokering services that individuals need to deliver their agreed support plan, through:

o Providing information and advice about different providerso Liaising with providers on behalf of the individual, if this is what they chooseo Putting in place all arrangements for services to start

Providing support services to people managing Personal Budgets / Direct Payments, including:o Payroll and money management serviceso Employment advice for those people who choose to employ their own staff, and all this

entails (e.g. recruitment, management, training etc.)o Training for individuals to enable them to confidently exercise choice and control through

their Personal Budget / Direct Payment

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Supporting people in the review of their support, either through self-review or through supporting them in any statutory body’s review process

Providing opportunities either directly or indirectly for disabled people to use their lived experience, for example through volunteering or providing peer support

Providing advocacy, through representing individuals and ensuring their voice is heard and understood

Facilitating peer support between disabled people, enabling people to share:o Their lived experience for the benefits of otherso Tips and tricks of what does and doesn’t worko What it felt like to go through a particular process or systemo The opportunity to build further social networks and become part of the fabric of

community life Providing services to public, private and voluntary organisations, including:

o Equality trainingo Access auditso Administrative supporto Support in enacting the Public Sector Duty.

This list is by no means comprehensive, but it gives a sense of the scale of the types of work DPULOs can be involved in, on both the influencing (“voice”) and delivery (“business”) sides of the public service economy and economy at large.

It is worth making the further point that, though much of these types of activities can currently be found delivered by DPULOs in a social care setting, we strongly believe that DPULOs can undertake each of these activities in each of a wide range of public services. In this document, participants have highlighted the need for DPULOs to be fundamentally involved in areas such as: Employment (particularly Access to Work) Disability hate crime (and the criminal justice system more widely) Health (especially Personal Health Budgets) Integration of health and social care Children’s services Welfare reform Volunteering and community development.

Enabling the contribution DPULOs can make: addressing commissioning

ecdp welcomes the Government’s Strengthening DPULOs Programme and the practical and financial support it can offer to DPULOs. More than this, it provides a platform for the work of DPULOs and demonstrates the Government’s ongoing commitment to the role of DPULOs.

Beyond this, there are some key structural factors that act as barriers to DPULOs themselves in fulfilling the potential role they can play. The most significant of these is commissioning.

There are a number of key facilitators that are under the control of commissioners to positively shape and create such a level playing field for DPULOs at both a strategic (commissioning-based) level and a more practical (procurement-based) one. Some of these are outlined below.

Commissioning

Commissioners can develop and implement policies that: Stimulate the participation of public service users by encouraging the development of local groups

and promoting the use of voluntary sector infrastructure resources to include and benefit service user groups

Work in dynamic partnership with individuals, communities and their representatives – such as DPULOs – to define, develop and deliver high quality services

Foster a level playing field for user-led and carer’s organisations to compete in any tendering process

Look to commission from local providers Look to commission from voluntary sector providers

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Recognise the added value that DPULOs can offer Recognise the wider role of DPULOs when carrying out their duty to promote disabled people’s

equality especially in drawing up and implementing local equality plans Ensure support enables Independent Living and embodies the ethos of choice, control and for all

people to participate as equal citizens in society Ensure that local contracting procedures do not discriminate unfairly against small / new /

DPULOs Offer Contracts, not Service Level Agreements, in order to give potential DPULO providers

flexibility over service delivery Offer 3- or 5-year funding arrangements, rather than year on year, to support service

improvement and provider stability.

Procurement

There are a number of practical things procurement teams can do to ensure procurement processes do not adversely impact DPULOs. These are as follows: Ensure DPULOs are given adequate time to respond to tenders Consider using a restricted or selective tender list, or a ‘single source’ approach to target

organisations controlled by users (particularly in cases of extending existing arrangements) Ensure DPULOs are specifically made aware of potential services particularly noted under the

areas they typically work in (i.e. Information and advice, Advocacy and peer support, Support in using Direct Payments (e.g. Information, Advice and Guidance (IAG), payroll, brokerage, support planning, Disability equality training, Support for the implementation of the Disability Equality Duty)

Ensure organisations who have not bid for contracts before are particularly aware of new opportunities

Ensure procurement portals are accessible Ensure tender documents are accessible and proportionate to the contract in question Ensure that the value for money components of the specification take account of the added value

often contributed by local organisations representing potentially eligible users. This should particularly be the case in tender marking scheme (where such components of ‘added value’ typically form only 5% of judging criteria)

Recognise framework arrangements so that large and smaller organisations can submit joint tenders. Larger organisations may be able to bring economies of scale to the contract while smaller organisations may be better placed to provide specialist services.

Observe good practice during the application process through ensuring:o Each tender pack contains an evaluation and a complaints formo That tender packs are available in a range of accessible formatso Guidance documents are provided that cover equal opportunities, partnership working

and how to complete the application formo All materials relating to a specific tender process are in one place and easy to accesso Monitoring systems are in place to record the number of smaller organisations bidding for

and securing contracts.

To support the development of an inclusive commissioning approach as set out above, commissioners should be encouraged to consider the following to shape their commissioning policy:

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Article 19 and reserving contracts

Article 19 regulations of the Procurement Directive 2004/18/EC form a part of European legislation that allows organisations to reserve public contracts for supported businesses, meaning it is permitted to invite only supported businesses to bid for the work. A supported business employs disabled people as over 50% of its workforce. For contracts under £144k, it is therefore allowable to simply invite a supported business – such as a local DPULO – to bid for a contract or offer them the chance to match the best price.

Awareness of Article 19 is very low. Provision of information about it – and how it can be used – would be a very useful addition to the implementation of the Disability Strategy.


Commissioning training from local organisations for commissioners themselves Employing or engaging commissioning experts from the voluntary sector or local SMEs to provide

specialist advice and feedback on relevant strategies Mainstream equality and access issues through the commissioning cycle Work with DPULOs to decide how best to commission local support services. Whatever model is

developed, the involvement of service users and carers in the design and delivery of services is of vital importance and will encourage better quality support services.

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Annex 1 – How this response was created

Following ODI’s announcement of the Fulfilling Potential discussion, ecdp has worked with members to collect their lived experience and co-produce a response.

ecdp Fulfilling Potential focus groups

Through four focus groups, including 80 disabled people from all impairment groups and of all ages, we held detailed discussions with people from across Essex: Focus group 1: a pan-impairment group for disabled and older people (aged16-80). This group

was attended by 15 participants Focus group 2: a group for young disabled people and people with learning disabilities, attended

by 25 people Focus group 3: a pan-impairment reference group who advise ecdp on issues surrounding the

Right to Control in Essex. The reference group has 10 regular contributors Focus group 4: a pan-impairment group formed of 30 members of ecdp’s staff drawing on their

own lived experience and that of supporting other disabled people in Essex.

Various outputs from the above focus groups are also available online, as described below: The stories of three focus of the focus groups are available on our website:

http://www.ecdp.org.uk/home/2012/3/2/fulfilling-potential-the-story-so-far-part-iii.html Photos from the events are available from ecdp’s Flickr account:

http://www.flickr.com/photos/essexcdp/ Audio recordings are available on Audioboo:

o http://audioboo.fm/rich_w o http://audioboo.fm/fayesavage

Three videos are available on YouTube: o http://youtu.be/bv_3Tc5k1r0 o http://youtu.be/9xVac02Ji34o http://youtu.be/hD-wk9BIdXQ

ecdp Fulfilling Potential survey

We launched an online survey to inform our response, which ran for three months. The survey was completed by 44 individuals from across Essex, who shared their lived experience of the key areas outlined in the Fulfilling Potential discussion document. A more detailed demographic breakdown of these individuals is provided below.

Please tell us which gender you identify as: Female – 64.7% Male – 29.4% Other – 0% Prefer not to say – 5.9%

Please give details of your sexuality: Heterosexual – 88.6% Homosexual – 2.9% Bisexual – 2.9% Prefer not to say – 5.7%

Please give details of your impairment (if you have multiple impairments, please tick all that apply): Mental health condition – 31.4% Learning disability – 22.9% Physical impairment – 57.1% Sensory impairment – 8.6% Long term health condition – 48.6% Prefer not to say – 2.9% Please give details of your ethnic group:

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http://youtu.be/hD-wk9BIdXQ

http://youtu.be/9xVac02Ji34

http://youtu.be/bv_3Tc5k1r0

http://audioboo.fm/fayesavage

http://audioboo.fm/rich_w

http://www.flickr.com/photos/essexcdp/

http://www.ecdp.org.uk/home/2012/3/2/fulfilling-potential-the-story-so-far-part-iii.html


Black African – 5.6% White British – 77.8% White Irish – 2.8% White (any other background) – 8.3% Prefer not to say – 5.6%

Please tell us which area of Essex you live in: North East Essex – 19.4% North West Essex – 2.8% Mid Essex – 11.1% South West Essex – 5.6% South East Essex – 22.2% Thurrock – 0% Outside of Essex – 30.5%

Other reports

ecdp also drew on previous work carried out with disabled people in Essex, which are highlighted below. Throughout this report we have also drawn on the considerable contribution of disabled people in Essex to these other key pieces of work. The number of individuals who have contributed through surveys, focus groups and meetings to these other pieces of work are listed below:

Survey respondents – 404 Focus group participants – 76 Public meeting attendees – 140

When all of our engagement mechanisms are included, therefore, we estimate we have had direct contact with approximately 650 disabled people in Essex and beyond in informing this response to Fulfilling Potential.

Access to Work and Driver Support – ecdp Lived Experience Report (August 2011) http://www.ecdp.org.uk/home/2011/8/15/disabled-people-may-be-prevented-from-working-due-to-governm.html

Big Care Debate – ecdp response (November 2009) http://www.ecdp.org.uk/home/2009/11/7/ecdp-contributes-to-the-big-care-debate.html

Changes to DLA and ILF – ecdp survey (July 2011) http://www.ecdp.org.uk/home/2010/7/23/results-

of-ecdps-survey-on-dla-ilf.html

Caring for Our Future – ecdp member engagement (November 2011) http://www.ecdp.org.uk/home/2011/11/8/contribute-your-lived-experience-at-ecdps-agm.html

Caring for our Future – ecdp response (December 2011) http://www.ecdp.org.uk/home/2011/12/6/ecdp-response-to-caring-for-our-future.html

Disability Hate Crime – ecdp Lived experience report (May 2011) http://www.ecdp.org.uk/home/2011/5/25/disability-hate-crime-in-essex-and-beyond-a-report-by-ecdp.html

Disability Hate Crime: ecdp member engagement (November 2010) http://www.ecdp.org.uk/home/2010/11/5/your-views-on-hate-crime-and-safeguarding.html

DLA reform Consultation – ecdp response (February 2011) http://www.ecdp.org.uk/home/2011/2/16/dla-reform-consultation-ecdp-response.html

Modernising Commissioning Green Paper – ecdp response (December 2010) http://www.ecdp.org.uk/home/2010/12/23/modernising-commissioning-green-paper-our-response.html

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http://www.ecdp.org.uk/home/2010/12/23/modernising-commissioning-green-paper-our-response.html

http://www.ecdp.org.uk/home/2010/12/23/modernising-commissioning-green-paper-our-response.html

http://www.ecdp.org.uk/home/2011/2/16/dla-reform-consultation-ecdp-response.html

http://www.ecdp.org.uk/home/2010/11/5/your-views-on-hate-crime-and-safeguarding.html

http://www.ecdp.org.uk/home/2011/5/25/disability-hate-crime-in-essex-and-beyond-a-report-by-ecdp.html

http://www.ecdp.org.uk/home/2011/5/25/disability-hate-crime-in-essex-and-beyond-a-report-by-ecdp.html

http://www.ecdp.org.uk/home/2011/12/6/ecdp-response-to-caring-for-our-future.html

http://www.ecdp.org.uk/home/2011/11/8/contribute-your-lived-experience-at-ecdps-agm.html

http://www.ecdp.org.uk/home/2010/7/23/results-of-ecdps-survey-on-dla-ilf.html

http://www.ecdp.org.uk/home/2010/7/23/results-of-ecdps-survey-on-dla-ilf.html

http://www.ecdp.org.uk/home/2009/11/7/ecdp-contributes-to-the-big-care-debate.html

http://www.ecdp.org.uk/home/2009/11/7/ecdp-contributes-to-the-big-care-debate.html

http://www.ecdp.org.uk/home/2011/8/15/disabled-people-may-be-prevented-from-working-due-to-governm.html

http://www.ecdp.org.uk/home/2011/8/15/disabled-people-may-be-prevented-from-working-due-to-governm.html


PIP draft criteria and regulations – ecdp final report (August 2011) http://www.ecdp.org.uk/home/2011/8/31/ecdp-members-share-final-views-on-pip.html

Personalisation: the experience of services users (June 2011) http://www.ecdp.org.uk/home/2011/6/7/personalisation-the-experience-of-service-users.html

Right to Control Consultation – ecdp response (September 2009) http://www.ecdp.org.uk/home/2009/10/5/right-to-control-consulation-ecdp-response.html

Specialist Disability Employment Programmes Consultation – ecdp submission (October 2011) http://www.ecdp.org.uk/home/2011/10/18/ecdp-response-to-getting-in-staying-in-and-getting-on.html

ii Here “civic life” includes undertaking at least one of the following activities in the previous 12 months: contact a councillor, local official, government official or MP; attending public meeting or rally; taking part in demonstration or signing petition.iii Mike Oliver Speaking out: disabled people and state welfare 1991, quoted by Neil Crowther: http://www.neilcrowtherconsulting.com/blog.php iv Jenny Morris: Rethinking Disability Policy, November 2011: http://www.jrf.org.uk/publications/rethinking-disability-policy v ecdp Fulfilling Potential Survey vi Quote taken from John Evans’ OBE evidence to the Inquiry on Independent Living by the Joint Committee on Human Rightsvii Human Rights Joint Committee - Twenty-Third Report: Implementation of the Right of Disabled People to Independent Living: http://www.publications.parliament.uk/pa/jt201012/jtselect/jtrights/257/25702.htm viii Parliament UK: Bill documents – Social Care Portability Bill services.parliament.uk/bills/2010-11/socialcareportabilityhl/documents.htmlix Personalisation: A Rough Guide from SCIE, available here: http://www.scie.org.uk/publications/reports/report20.aspx Personalisation, Productivity and Efficiency, from SCIE, available here: http://www.scie.org.uk/publications/reports/report37.pdf xi EHRC: Promoting the Safety and Security of Disabled Peoplehttp://www.equalityhumanrights.com/key-projects/good-relations/safety-and-security-for-disabled-people/

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http://www.ecdp.org.uk/home/2011/10/18/ecdp-response-to-getting-in-staying-in-and-getting-on.html

http://www.ecdp.org.uk/home/2011/10/18/ecdp-response-to-getting-in-staying-in-and-getting-on.html

http://www.ecdp.org.uk/home/2011/6/7/personalisation-the-experience-of-service-users.html

http://www.ecdp.org.uk/home/2011/8/31/ecdp-members-share-final-views-on-pip.html

http://www.equalityhumanrights.com/key-projects/good-relations/safety-and-security-for-disabled-people/

http://www.equalityhumanrights.com/key-projects/good-relations/safety-and-security-for-disabled-people/

http://www.scie.org.uk/publications/reports/report37.pdf

http://www.scie.org.uk/publications/reports/report20.asp

http://www.publications.parliament.uk/pa/jt201012/jtselect/jtrights/257/25702.htm

http://www.publications.parliament.uk/pa/jt201012/jtselect/jtrights/257/25702.htm

http://www.parliament.uk/business/committees/committees-a-z/joint-select/human-rights-committee/inquiries/protecting-the-right-of-disabled-people-to-independent-living/

http://www.parliament.uk/business/committees/committees-a-z/joint-select/human-rights-committee/inquiries/protecting-the-right-of-disabled-people-to-independent-living/

http://www.jrf.org.uk/publications/rethinking-disability-policy

http://www.neilcrowtherconsulting.com/blog.php


Annex 2 – About ecdp

ecdp is an organisation run by and for disabled and older people. Established in 1995 our origins are firmly rooted in a belief that the voice of disabled and older people, both as individuals and collectively, is vital if the lives of disabled and older people are to be enhanced.

Our vision is to enhance the everyday lives of disabled and older people in Essex and beyond. We do this by: Actively involving and engaging with disabled and older people Delivering a range of high quality services, projects and programmes Working in partnership with a range of stakeholders in the public, private and voluntary sectors Shaping and influencing strategy, policy and practice Creating a professional, effective and efficient organisation that can and does deliver.

We provide a wide range of support, information, advice and guidance services, primarily in the field of social care. We currentlyxii provide Direct Payment / Personal Budget support services to approximately 3,900 clients in 3 services across 4 local authority areas. We are also closely involved in the design and delivery of the Right to Control Trailblazer in Essex. As an organisation we have 43 staff, approx £1.7m turnover, nearly 190 volunteers and approximately 1,700 members of all ages and impairment groups.

xii As of December 2010

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Fulfilling potential ecdp response (march 2012) - final

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