What does well-being mean for disabled children? Bryony Beresford Social Policy Research Unit University of York York. YO10 5DD

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 framework 1.For a disabled child, outcomes or well-being can be about maintenance as well as about improvements or progress 2.The ‘meaning’ of the five domains could be different for disabled children compared to non-disabled children 3.Communication is not sufficiently recognised within the framework 4.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.