The higher you climb the further you see! Aiming High for children with disability

Key priorities and funding

Transition Support Programme e £19 million

Disabled children access to childcare (DCATCH)

Palliative care

Core Offer and implementation materials NI 54

Parent participation

Individual budgets

Bercow review

SYMPOSIUM: SPECIAL NEEDS

The higher you climb thefurther you see! Aiming Highfor children with disabilityJane Williams

Antonia Wolff

Sue Dryden
Short breaks e £280 million
AbstractA review of recent recommendations supporting enhanced support to

children and young people with disabilities through the Aiming High

initiative. Including a regions response to this national plan and supporting

case vignettes.

Keywords Aiming High; Core offer; Every Disabled Child Matters;

transition support: palliative care

Introduction

If children’s services were claimed to be the Cinderella of the

health service by Kennedy in his report after the Bristol Child-

ren’s cardiac services enquiry then children with disability were

Cinderella’s younger sister! It was the death of Victoria Climbie

however that prompted Lord Laming to write his report which

led to the publication of ‘Every Child Matters’ and to the

appointment of a Minister for Children, Young people and

Families. At last we had a government policy stating that Every

Child did indeed Matter. Attitudes and opportunities for children

and young people with disabilities also substantially and irrev-

ocably change e Every Disabled Child also Mattered! EDCM was

a campaign launched in Sept 2006 run jointly by four organiza-

tions (Contact a Family, Council for Disabled Children, a Special

Educational Consortium and Mencap). The campaign urged us to

aim higher for children and aim higher for those who are

disabled e commendable and long overdue.

Statistically we cannot ignore the rising numbers of those less

than 19 years with a disability and often a complex disability.

Jane Williams MB BS DCH MRCP FRCPCH is a Consultant Paediatrician at The

Children’s Centre, City Hospital, Nottingham Children’s Hospital,

Nottingham University Hospitals NHS Trust, Hucknall Road, Nottingham

NG5 1PB, UK. Conflicts of interest: none.

Antonia Wolff MB BS DCH BSc MRCP FRCPCH is a Consultant Paediatrician

(Neurodisability) at Nottingham University Hospitals NHS Trust, UK.

Conflicts of interest: none.

Sue Dryden RGN RSCN MA is the Child Health Strategy Lead in the East

Midlands Health Authority, NHS East Midlands, Octavia House,

Bostocks Lane, Sandiacre, Nottingham NG10 5QG, UK. Conflicts of

interest: none.

PAEDIATRICS AND CHILD HEALTH 20:7 327

In the UK, there are 770,000 disabled children under the age of 16

years e that equates to one child in 20. The number of disabled

children increased by 294,000 or 62% between 1975 and 2002,

and there are more children with complex needs. This is due in

part to population increases, but also to medical advances and

increased diagnosis and reporting. Of those 770,000 disabled

children 98% live at home and are supported by their families.

The same children are more likely to live in poverty. Legislation

and specific opportunities to support this group are essential.

Aiming High for Disabled Children (AHDC) e national

recommendation

This new priority at a government level led to the publication of

Aiming High for Disabled Children e following a comprehensive

spending review by Her Majesty’s Treasury. AHDC was launched

in May 2007 and heralded a transformation in services for chil-

dren with a disability. The plan was supported by substantial

new funding at local authority and PCT level. This was reflected

in the 08/09 and 09/10 ‘NHS Operating Framework’ and the

‘Children’s Plan’ published in 2008.

In total £340 million has been pledged 08/09e10/11 and in

addition commitment for short breaks for disabled children with

complex care needs (DH/NHS) £280 million.

Transition support programme (TSP)

The problems that young people face with a chronic illness or

disability when making the transition between paediatric and

adult health, education and social services are recognized by all

involved in delivering services to this group of people but none

so acutely as the young person themselves. Having to leave

school is in itself a major change for many, but if, at the same

time, the young person has to leave their respite setting, phys-

iotherapist and friendship group it is clearly a major upheaval

compounded by the lack of suitable programmes and settings,

understanding and skills available to welcome their graduation.

As a response to this need, the TSP was launched, to improve

practice for transition to adulthood for young disabled people.

The package has been funded (£19 million 08e11) and consists

of two main elements:

e National transition support team (ntst), www.

transitionsupportprogramme.org.uk

e Support for change at local level through a combination of

direct grants and regional adviser activity.

Each local authority area is receiving £10,000 to engage with

young people and assess their current support for transition;

� 2010 Elsevier Ltd. All rights reserved.

http://www.transitionsupportprogramme.org.uk

http://www.transitionsupportprogramme.org.uk


13 local authorities (LAs) are receiving an additional £37,500 to

extend their practice. In order to try to quantify success or areas

of difficulties a Self-Assessment Questionnaire has been sent out

to all LAs and the deadline for responses was 30 January 2009

which determined where support would be prioritized. Extended

case studies will be available on the ntst website, 13 case studies

are currently available.

Disabled children’s access to day care e DCATCH

The DCATCH funding package is £35m (2008e11) and the first

pilots were launched in September 2008 and second wave in

September 2009. All LAs had new duties to secure a sufficient

supply of childcare in their area, with a particular focus on the

provision of childcare for disabled children.

Palliative care

Children’s palliative care services have traditionally been deliv-

ered by charity providers. Within the AHDC initiative £20m

(2009e11) DH funding has boosted palliative care services.

Better Care: Better Lives is the first national palliative care

strategy for children with life-limiting conditions, or who require

palliative care services.

Short breaks

Parents of children with disability have had significant problems

finding sitting services and in turn the children have had prob-

lems having opportunities to have an experience being cared for

by people other than their main carers. We recognize that both

need breaks but opportunities for this have been either hard to

find or even totally absent. As a response to this need there has

been identified a Short breaks funding package of £370m

(2008e11). Local authority (LA) allocations are supported by

significant additional funding for Primary Care Trusts (PCTs)

from NHS allocations. Twenty-one pathfinder sites received

funding in March 2008.

Together for disabled children were contracted to deliver

support to LAs and PCTs in June 2008 (www.togetherfdc.org).

Short breaks implementation guidance for PCTs and LAs was

published in July 2008 and this is being evaluated. Non-path-

finder Trusts were asked to demonstrate readiness for short

break funding by March 2009 with plans to publish an on-line

short breaks marketplace.

Core Offer and Disabled Children’s National Indicator (NI 54)

Alongside the substantial funding for the Aiming High for

Disabled Children (AHDC) programme, the Government has

introduced measures to make the system work better for disabled

children, young people and their families. Keys to transformation

of the system are the Core Offer and the Disabled Children’s

National Indicator (NI).

Core Offer

The Core Offer sets out in one place a national statement of

expectations for how disabled children and their families will be

informed and involved as their needs are assessed and the

necessary services are delivered. The Core Offer covers:

B Information and transparency e services for disabled

children and young people and their families should be

accessible, available, accurate, joined up and user


focussed. Also, the availability of services and decisions on

how services are commissioned should be transparent and

fair.

B Assessment e in order to deliver services for disabled chil-

dren and young people, assessments should be holistic,

multi-agency and co-ordinated. Best practice evidence shows

that integrated assessments are more likely to meet needs

effectively and increase family satisfaction with services.

B Participation and feedback e parents and young people

should be able to participate effectively in decisions about

the services they receive, and practitioners should both

seek and act upon feedback. If disabled children and young

people and their parents are consulted about services

available in their local areas, better services should result,

and their satisfaction levels are likely to increase.

The standards in the Core Offer provide clarity on what entitle-

ments and services disabled children, young people and their

families can expect in every area.

The Core Offer set of documents includes:

� The Aiming High for Disabled Children Core Offer (standards).

� Core Offer implementation materials to help local authorities

(LAs) and Primary Care Trusts (PCTs) develop their local

Core Offer.

� Delivering the Core Offer standards (to help LAs and PCTs by

setting out delivery milestones with examples of practice and

materials developed by other agencies).

Implementation materials of the Core Offer

The aim of these materials is to help local authority (LA) and

Primary Care Trust (PCT) managers and commissioners deliver

the Core Offer to families of disabled children locally.

The materials

� explain why each element is important

� suggest resources to help deliver the Core Offer standards

� give examples of progress against some of the standards.

Managers and commissioners come to the Aiming High for

Disabled Children (AHDC) programme with different areas of

expertise. The materials provide an introduction to some of the

key guidance and practice tools which are relevant to the full

implementation of the Core Offer.

Developing a local Core Offer

The national Core Offer provides a set of standards which

families with disabled children can expect across the country.

This should be developed locally so that families with disabled

children will know how the Core Offer will be implemented in

their area. For the Core Offer to be meaningful, it will be essential

to work with local families, parents and children and young

people. Local discussions should consider how to monitor

progress towards delivery of the Core Offer. These discussions,

while lead by the PCT and local authority, should embrace

voluntary and independent organizations working with disabled

children and young people.

The experience of working together with families to agree the

local Core Offer will be an important step in establishing

the participation in service development which is itself one of the

five elements of the Core Offer.

The views of disabled children and young people should

influence the development of the Core Offer; otherwise there is

a greater risk that services will be provided which do not meet the


http://www.togetherfdc.org


actual needs of the service user. Disabled children including those

with severe learning disabilities and very limited language will

have their preferred methods of communication. They will be able

to communicate preferences if they are asked in the right way by

people who understand their needs and have the relevant skills.

National Indicator (NI 54)

Vignette e break-in-partnership (B-i-P)

Aisha has bilateral cerebral palsy and attends her local primary

school. In school she has an individual education plan (IEP) and

a named teaching assistant who helps her with co-ordination and

personal care. At holiday times she was excluded from her local

Summer Fun Club which her peers attended as there was no

named additional available assistance. The B-i-P scheme was then

launched which supplied additional funding to the setting to

employ an individual to support (after training) Aisha to be

included in her leisure setting.

At last there is an attempt to measure how satisfied families and

users are with their local services for their children and young

people affected by a disability or chronic illness. This indicator

(NI 54) was included by 30 local areas in their local area agree-

ment (LAA) or as a local target for 2008e09. The main ques-

tionnaires to be circulated in January to March 2009 and it is

anticipated that the first full set of local level data will be avail-

able in autumn 2010.

Several similarly minded clinicians were disappointed that

this offer was not as explicit as they hoped in terms of a basic

agreement regarding therapy, resources, equipment access and

waits but we have to start somewhere. An additional concern is

that the indicator and ‘Core Offer’ are targeted at PCTs but

a substantial amount of care for children with disabilities and

chronic illness is delivered by acute trusts who are not being

measured directly or targeted to ensure that they are also chal-

lenged to ensure a higher quality of care to children and young

people with disability.

Implicit within AHDC is that regions need to decide their own

needs and prioritize on an individual basis.

Translating this into regional implementation e one regions

strategy

We interviewed Heather Sahman Regional Change Agent e

Children and Families and Sue Dryden Child Health Strategy

Lead, NHS East Midlands to hear about a regions response to the

national initiative. In the East Midlands following the publication

of Aiming High for Disabled Children in 2007, Care Services

Improvement Partnership (East Midlands) and NHS East

Midlands asked their constituent NHS organizations to complete

the National Service Framework Standard 8 self-assessment

together with their local authority partners. The results from this

audit were very variable suggesting very different levels of joined

up working and available information, however they did show

some examples of good practice and also highlighted several

areas for improvement across the region.

In line with Aiming High guidance, a regional board was

developed to steer the service improvement and also to gain wider

engagement particularly with local authority partners. A key factor

was the choice of a chair and a Director of Children’s services from

within the region has chaired the board over the last 15 months.

Parent involvement was clearly going to be needed at every

stage of this work; therefore two events were held at different

venues in the region inviting parents and carers of disabled

children and young people to share their views and experiences.

From these meetings an ongoing parents’ forum was established.

This forum contributes representatives to the regional board and

provides an e-mail consultation group of parents and carers.

The results of the Standard 8 audit were discussed at the

parents’ forum and also at local stake holder workshops. This led

to the identification of the following priorities in our area in

addition to shared difficulties with transition and palliative care:


- Timely therapy services.

- Reform of community equipment and wheel chair services.

- Improving provision of short breaks.

A number of multi-agency working groups have been developed

to tackle the specific priorities identified. These are chaired by

clinicians/practitioners and, where appropriate, they are linked

to other relevant initiatives e.g. ‘Better Care, Better Lives’.

These groups are

� Therapy and equipment

� Short breaks

� Transition Support Programme (TSP)

� Palliative care

Therapy and equipment

Although therapy services scored highly in the Standard 8 audit

the questions focused on the service quality and not accessibility

which was a key concern when the audit was shared with the

parents’ forum.

The therapy group has recently completed work on therapy

outcomes resulting in a draft paper, which has received feedback

from parents and will be shared with commissioners in spring

2010. It is expected this work will support improved commis-

sioning with a focus on outcomes not on output and builds on

National Indicator 54, the experiences of parents with disabled

children.

To support improved procurement of equipment a survey has

been undertaken to identify differences in practice around the

region and to establish common core and specialist equipment

lists.

Short breaks

A regional audit of training available for short breaks staff

identified duplication and gaps. Some anomalies were revealed,

for example, if a particular child’s teaching assistant is also

employed to provide a short break service in the home, in many

areas he or she has to undertake manual handling training for

both directorates (social care and schools) of the same children’s

services organization. A one day workshop is being organized to

share good practice and agree key principles for training.

Transition

A one day workshop was held where practitioners from a range

of agencies providing adult and children’s services, plus young

people themselves developed the outline of a tool which has now

developed into the East Midlands regional guidance for better


Vignette e transition

Julia has Rett syndrome with complex epilepsy. When she was 18

years old her mother died and her respite and school placement

were soon finishing due to her age.

Her disability social worker and transition co-ordinator con-

ducted a multi-agency assessment in partnership with her father

and Julia became accommodated in a supported living setting with

a group of four other young people. She attends a day setting for

activities on some days. Within her setting are a mixture of care

staff and outreach community nursing and therapy support.


transitions. The framework is built around a young persons’

charter and includes many principles of good practice to support

each charter aim.

For example: ensuring young people can find out what

services are available locally through the use of age appropriate

media outlets such as local radio and social networking sites.

The East Midlands Palliative Care Network

This group was formed by clinicians and commissioners in

response to ‘Better Care, Better Lives’ e the national strategy for

children’s palliative care. It developed from a regional special

interest group of clinicians which was already in existence and

meeting regularly at the regional children’s hospice. It has

subsequently come under the umbrella of the Aiming High

regional board.

Through workshops and mutual support from clinicians and

liaison with the East Midlands Ambulance Service, a system for

all children with life-limiting and life threatening conditions to

Vignette e palliative support

Mohammed has a neurodegenerative disorder of unknown aeti-

ology and at two years of age he is having recurrent admissions to

hospital including the paediatric intensive care unit with seizures,

chest infections and apnoeic episodes. His community paediatri-

cian and paediatric neurologist agree a personal resuscitation

plan with his parents, in consultation with religious leaders in the

local Muslim community. The plan includes airway management

and oral antibiotics but no more invasive treatment e now the

children’s community respiratory physiotherapist and the child-

ren’s palliative care nursing team support Mohammed and his

family at home.


have a recognized personal resuscitation plan has been imple-

mented across the region. This is supporting improved end of life

care planning and empowering families.

The West Midlands Children’s Palliative Care Network have

kindly agreed that several East Midlands clinicians will attend

their paediatric advanced communication skills programme with

a view to developing a similar East Midlands programme.

The network has identified some funding and epidemiological

advice to support children’s palliative care teams across the

region to collect data on need in line with the Association for

Children’s Palliative Care (ACT) minimum data set.

Summary

Our regional board has enabled us to maintain momentum, take

a strategic overview and have access to key partners such as the

Directors of Children’s services. This regional approach to sup-

porting the implementation of Aiming High for Disabled Children

has we believe accelerated the sharing of good practice and led to

the development of useful new tools and ways of working by the

clinicians themselves.

Clinicians need to engage with their regional change

improvement teams and care services improvement partner-

ships, encourage families to communicate their needs e as

without their involvement relevant change is less likely to occur.

With us all working together positive change can be facilitated

and higher standards and enhanced supportive opportunities

truly achieved. A

FURTHER READING

[email protected].

Audit of services against NSF8. DH, 2007.

Better care: better lives. DH/CNO-D-CF&M, Feb 2008.

Children’s National Service Framework Standard (NSF) 8. DH/DfES, 2004.

Contact a family, www.caf.

Learning from Bristol: the report of the public inquiry into children’s heart

surgery at the Bristol Royal Infirmary 1984e1995. Command Paper:

CM 5207.

Making life limited children and young people count: a framework and

guide for local implementation. www.act.org.uk.

Together from the start: practical guidance for professionals working with

disabled children. DfES, 2003.

Wolff A, Hollingsworth S, Crawford C, Whitehouse WP. Use of personal

resuscitation plans in children with life limiting condition. Arch Dis

Child 2006; 91(suppl 1): A83.

www.dcsf.gov.uk/childrensplan/downloads/The_Childrens_Plan.

www.edcm.org.uk/.

www.everychildmatters.gov.uk/publications/.


mailto:[email protected]

http://www.caf

http://www.act.org.uk

http://www.dcsf.gov.uk/childrensplan/downloads/The_Childrens_Plan

http://www.edcm.org.uk/

http://www.everychildmatters.gov.uk/publications/

The higher you climb the further you see! Aiming High for children with disability

Documents

Transcript of The higher you climb the further you see! Aiming High for children with disability