“It always comes down to money”: recent changes in services to disabled children

1. “It always comes down to money”: recent changes inservices to disabled children Kirsten Stalker, Charlotte Macdonald, Caroline King, Francis McFaul, Colin Young, Moyra Hawthorn, Louis Patrizio for Scotland's Disabled Children Relaunch Event 3.10.13

2. Research aim To examine changes in the availability and accessibility of publicly funded services for families with disabled children in Scotland over last two years ... from the perspectives of voluntary sector providers, parents, children and young people

3. Research methods On-line survey of voluntary sector providers (53) Ten focus groups with parents across Scotland Five focus groups with young disabled people aged 12-20 One-to-one session with a young person with little speech Three case studies of services to individual children with complex needs

4. Reduced level or quality of services 1 87% voluntary providers had funding cut or change in allocation procedures by public funders 72% said their service “as good as two years ago”... ... yet 81% reported some aspect of deterioration 32% experienced changes in local authority eligibility criteria; 23% aware of changes for next year

5. Reduced level or quality of services 2 Parents reported reductions/shortages in levels of support across services In some cases, support had been withdrawn or services closed down Parents experienced reduced quality of support

6. Reduced level or quality of services 3 Less money spent on staff training Fewer experienced/ qualified staff Increased charges for services Longer waiting lists Policy and practice developments being undermined

7. Impact of changes on families Growing unrecorded unmet need Some families with very little or no support Focus on crises/children with complex needs Children more isolated, missing out, losing skills Increased parental stress, anxiety and depression Greater incidence/risk of family breakdown

8. Young people's views Significant differences from parents’ accounts Overall, satisfied with support received Related service change to change in their own lives A few thought they still needed a service which had stopped Had little say in significant decisions about services Relied on and accepted mothers’ decisions Concerns about moving to adult life

9. Policy and practice implications Public bodies must observe disabled children's rights... Consult with them and take views into account; also must consult with parents (Children Scotland Act 1995) Formally assess child’s needs when parents ask them to do so (Children Scotland Act 1995) Provide certain services if child needs them and is eligible (Chronically Sick and Disabled Persons Scotland Act 1972) Can be unlawful to reduce/ withdraw services without proper review or re-assessment of need ((Glocs CC v Barry 1996-97) Must publish info about available services; (Children Scotland Act 1995). Active dissemination and 1-1 discussion would help

10. Policy and practice implications Include disabled children fully in GIRFEC Staff training in disability equality, children’s rights, inclusion and autism awareness COSLA - update guidance re service charges Govt - set up a conflict resolution mechanism for families using SW services Govt - monitor LA duties under S.23 Children (Scotland) Act 1995 and report under Children and Young People (Scotland) Bill SCSWIS - explore service quality and, with Govt, issue guidance to improve services.