What does well-being mean for disabled children?

Bryony BeresfordSocial Policy Research Unit

University of YorkYork. YO10 5DDbab3@york.ac.uk

Some definitions

Children up to and including 18 years

In the UK disabled children include: children with physical impairments/disabilities children with learning difficulties children with complex health care needs requiring multiple

involvement of statutory services children with degenerating conditions

Outcome indicators for children in England

Every Child Matters (2003) England government’s strategy to transform children’s

services Includes a framework by which children’s outcomes can be

examined

Five key domains: Being healthy Staying safe Achieving and enjoying Making a positive contribution Economic well-being

Indicators in each of these domains are used to: examine and track children’s well-being and outcomes assess quality of services and extent to which they are

supporting these outcomes used at a national and local level

Does the Every Child Matters framework work for disabled children?

Although developed in consultation with children, disabled children were not included in this process

Concerns: Are these domains of child well-being / child outcomes meaningful for

disabled children? Are they appropriate? Is anything missing from this framework?

What does, for example, …. …‘Being Healthy’ mean for a child with complex health care needs? .. ‘Achievement’ mean for a young person with a degenerating

condition? …‘Enjoyment’ mean for a child with severe autism? …‘Positive contribution’ mean for children with profound and multiple

disabilities … ‘Economic well-being’ mean for a disabled young person who will

never be able to take on paid work?

Existing evidence from research about disabled children’s outcomes

Draws attention to the fact that disabled children typically enjoy and value the same things as non-disabled children.

Highlights the fact that disabled children have poorer outcomes, and are at increased risk of poor physical and/or mental/emotional health

But research has not typically been conducted ‘alongside’ non-disabled children Written about, and therefore understood, ‘in isolation’ Any comparisons made with non-disabled children’s lives are

typically superficial

The outcomes for disabled children research project

The research

The questions What do disabled children and young people value about their lives? What are their desired outcomes What do they feel is necessary to them achieving positive outcomes

(now and in the future)?

Focused on children with: Complex health needs Autistic spectrum disorders Degenerative conditions Do not use speech to communicate due to physical/neurological

impairment

95 families, representing 100 children (2-19yrs) Over 40 children directly participated through (mainly) face-to-face

work and some group discussion work Interviews and focus groups with 90 mothers and 18 fathers Interviews with 27 ‘other informants’

How did the research findings map against the Every Child Matters framework?

Disabled children typically enjoy, value and prioritise the same things as non-disabled children.

BUT difficulties or inadequacies with the framework1. For a disabled child, outcomes or well-being can be about

maintenance as well as about improvements or progress2. The ‘meaning’ of the five domains could be different for

disabled children compared to non-disabled children3. Communication is not sufficiently recognised within the

framework4. The framework does not adequately reflect a hierarchy of

outcomes

The nature of the child’s disability and its severity impacts on the extent to which the framework as it currently stands ‘works’ or doesn’t work for disabled children

1. Maintenance instead of progress

Sometimes progress or improvement cannot be expected to occur Degenerative conditions Physical or learning impairments limits progress or further

development: potential has been reached

Instead, the emphasis was on ‘maintaining where they are at’… Abilities Physical functioning Sources of enjoyment (Best possible) state of health Levels of achieved independence

Maintenance of achieved outcomes was absent from the framework and indicators

…some examples

‘Being Healthy’ being comfortable and not in pain

‘Enjoying and achieving’ Academic achievement not prioritised Acquisition of skills which, among non-disabled children,

might be taken for granted were keen as key achievements (money skills, using public transport, life skills)

Enjoyment for some disabled children may not ‘feel very child like’ : some children with autistic spectrum conditions, children at the end stage.

Making a positive contribution Having the opportunity to make choices – significant and

everyday

Economic well-being Being meaningfully occupied as opposed to readiness for

training/employment

2. The need to redefine the meanings of the ECM outcomes or indicators used. The ECM outcomes or indicators did not always capture or

represent disabled children’s lives or priorities. Desired outcomes identified by disabled children, parents and

‘other informants’ were at a more ‘basic’ level than those set out in the ECM framework

Outcomes or aspects of well-being perhaps ‘taken for granted’ in

typically developing, healthy children

Developing social and life skills strongly prioritised over academic achievements

Outcomes not linked to chronological age or typical life stage

transitions

3. Communication

There is an indicator relating to communication in the ECM framework but it only concerns very young children’s communication

Being able to communicate oneself / having a system by which can communicate Regarded as being fundamental to well-being Across all ages

4. ‘A hierarchy of outcomes’

The ECM framework did not adequately represent the fact that there appears to be a hierarchy of outcomes

Aspects of well-being identified by disabled children, and their parents as being fundamental to well-being:

being healthy (for example, the lack of pain) being able to communicate staying safe

If these not happening for a child then other aspects of well-being (enjoyment, achievement etc)

Unlikely to be experienced Not experienced to full potential

Conclusions and implications

A normative, developmental model of child outcomes is insufficient/inappropriate for disabled children

Definitions of key concepts of well-being / outcomes need to be widened / reconceptualised to reflect the lives and experiences of disabled children

Some implications for the measurement of well-being at a population level….

The need for disabled child specific well-being measures to be widely and routinely collected

Addressing the lack of high quality/robust measures of well-being which can be used by/for groups of disabled children

The dearth of high quality standardised psychometric measures Properly including disabled children in government surveys and

not routinely using proxies: not currently happening in the UK.