Improving access to social care for adults with autism
Getting transition right
If anybody should look at anything, they should look at that transition.Residential home manager (7)
The transition from children's to adults' social care, problematic for many groups, can be particularly difficult for people with autism. At present, 70 per cent of children with autism identified in the special educational needs system have statements of special educational needs, and are thus entitled to transition planning from Year 9 (14 years of age). A similar proportion of local areas have multi-disciplinary transition protocols (11). Despite this, and despite a general consensus that people need personalised, holistic and ambitious transition plans (10), many young people with autism need to be served better by the transition process.
They face the same problems as other groups during transition (7), namely:
- difficulties maintaining consistent staffing over the transition period
- lack of communication between professionals in different services
- different services switching to adult services at different ages
- fewer, less well-resourced services in adulthood
- paying for services that were free as a child
- carers feeling excluded from consultations on their now-adult family member.
In addition, some aspects of autism can make transition particularly difficult:
- School provides a structure that many people with autism like, and feel the lack of when they leave.
- Coping with change can be problematic.
- Conceiving of a range of new options can be hard.
- There is chance of falling through the gaps in adult services for people with high-functioning autism and Asperger's Syndrome.
- Adult life and expectations, including the world of personal relationships, can carry new challenges for people with autism (6).
- There is limited provision of further education options for people with autism, especially those who display challenging behaviour (7).
Furthermore, if transition for people with autism goes badly, they can be stuck in poor-quality services, and have lives that are not as independent as they ought to be (36).
During transition, there needs to be (38):
- full involvement of young people with autism and their families in multi-agency transition planning
- respect given to the preferences of young people with autism
- better information given to families as young people approach transition
- better communication between adults' and children's services. Some local areas are placing Children with Disabilities staff within adult teams to promote joint working; others are adopting a 'single trusted contact' model. Research is needed into whether approaches like this can be effective in improving outcomes
- an opportunity for people placed out-of-area to return home, should they wish
- training in autism for transition staff, including staff working in child and adolescent mental health services, supporting young people with autism and mental health problems to access adult mental health support
- attention paid to the needs of young people with autism who display challenging behaviour (39)
- autism training for Connexions workers, and better links between Connexions and social care staff
- differentiation in assessments between support needs and education needs, so that people are not put on academically limited courses due to their communication difficulties
- an underlying assumption, including in specialist schools, that young people with autism, including those with challenging behaviour, can and should lead full lives of their own choosing.
In England, transition planning is being addressed in 'Support and aspiration: A new approach to special educational needs and disability' (40), with proposals for a unified assessment, and an 'Education, Health and Care Plan', covering social care, education, health and support into employment, which runs until a person is 25. There is a strong emphasis also on professionals having much higher aspirations for children with disabilities (40), building on the messages of 'Aiming high for disabled children' (41) and the Transition Support Programme. Although the Transition Support Programme ends in 2011, local areas will have developed greater knowledge and expertise in transition as a result.
The focus in 'Support and aspiration'on reducing the number of people who have a statement of special educational needs may mean that some people with autism fall outside of the transition planning process, although having a statement is not the only route to support through transition (11).
In Northern Ireland, transition planning is guided by the Education (Northern Ireland) Order 1996 as amended by the Special Educational Needs and Disability (Northern Ireland) Order 2005. Further guidance is contained in the 'Code of Practice on the identification and assessment of special educational needs'(42) and a supplement to the Code of Practice issued in 2005 (43). A Task Group on Autism was set up in November 2000 to make recommendations on educational provision for children and young people with autism, and recommended that transition processes be more inclusive of young people and their families, cover all aspects of a young person's life and promote the better sharing of information (44). Furthermore, a priority for action of the DHSSPS strategic action plan is the development of multi-disciplinary, multi-agency approaches totransition (24).
A government inter-departmental group comprising of the Department of Education, the Department for Employment and Learning and the DHSSPS was set up to take forward strategic developments in the transition process for young people with special educational needs, which includes the needs of young people with autism. The group's report highlights deficits in transitions planning and provides a wide range of actions to make improvements in moving across the spectrum of service provision (45).
- Department for Education (2011) Support and aspiration: A new approach to special educational needs and disability: A consultation, Green Paper, Cm 8027, London: The Stationery Office.
- Department of Education Northern Ireland (2002) The education of children and young people with autistic spectrum disorders: Report of the Task Group on autism, Belfast: Department of Education Northern Ireland.
- Department of Education, Department for Employment and Learning and Department of Health, Social Services and Public Safety (2006) Report of the Transitions Inter-Departmental Working Group, Belfast: Department of Education, Department for Employment and Learning and Department of Health, Social Services and Public Safety.
- Social Care Institute for Excellence (2011) 'Challenging behaviour: a guide for family carers on getting the right support for teenagers', At a Glance 39, London: Social Care Institute for Excellence.