Improving access to social care for adults with autism
My AS [Asperger's Syndrome] son ... had to be removed at one point from the home and put in an emergency residential placement for 18 months because he has not had access to appropriate mental health services.A parent of someone with autism (7)
Providing prompt, preventative services can work for people at different points on the autistic spectrum. It can benefit people with high-functioning autism or Asperger's Syndrome, who may find that support with social skills can prevent social isolation and attendant mental health difficulties. It can also help people with autism and complex learning disabilities or challenging behaviour, for whom intensive support within the home, coupled with decent respite care, can prevent placement in expensive residential care.
A good-quality response at the point of diagnosis - prompt advice, practical support and help finding the right ongoing support - is a key part of early intervention, and likely to be of benefit to all people with autism and their carers and families (23). For many, these small amounts of practical support will then be sufficient to help them manage in society (7). Many people with autism choose to spend personal budgets on just this sort of care (10). Support with tasks such as bill-paying and filling out forms can make the difference for some people between living independently, and stressful visits from bailiffs and to courtrooms.
Developing capacity for low-level early intervention services could lessen the lengthy battles for support that many people with autism and their families have had to wage. This helps them, but could also benefit local services in terms of costs and pressures on staff (7). National Audit Office research (23) indicates that supporting more people with high-functioning autism and Asperger's Syndrome - those most often excluded from services - quickly becomes cost neutral, and can potentially lead to long-term savings. These savings come from higher tax incomes and reduced benefits payments as people are supported into employment, and reduced mental health and criminal justice costs as people are supported before they reach crisis points in their lives.
Supporting an extra 4 per cent of people with high-functioning autism in a local area could make the service carrying out that support cost neutral. If 8 per cent more people were supported, savings could total £67 million (23). There is a challenge to be met here for commissioners and policy-makers: the bodies that would need to spend more - most likely local authorities/trusts - are not those set to benefit most heavily from any savings - mental health trusts, the Exchequer and the criminal justice system.
The National Audit Office report highlights, therefore, the potential benefits, for outcomes and budgets, of specialist care management teams for people with high-functioning autism and Asperger's Syndrome (23). Although only a small amount, and quite new, evidence so far suggests that people with high-functioning autism and Asperger's Syndrome who have access to these teams (23):
- find getting a diagnosis easier
- lead more independent lives
- are more likely to work
- are less likely to have mental health difficulties
- are more likely to have carers who are in work.
Furthermore, there are fewer people with high-functioning autism in residential or in-patient provision in those areas that have a specialist team than those without - 1 per cent against 7 per cent. This is worth noting, because:
- people with autism, be that high-functioning autism, or autism linked with learning disabilities and complex behaviours, are often placed in expensive residential care
- it costs about £60,000 a year less to support a person with autism in their own home than place them in residential care (23)
- placements are often far removed from a person's family and community
- out-of-area placements are relatively more expensive than local ones (52) and are infrequently used for positive reasons such as proximity to loved ones
- out-of-area placements commonly reflect a lack of local provision or expertise, and are often associated with poorer access to specialist healthcare (23)
- money spent on out-of-area placements is money that cannot be spent developing local expertise (6), which may benefit all people with autism in a local commissioning area.
Commissioning high-quality home-based and respite support can therefore help people live in the community and lead to better outcomes at lower costs. Specialist advocacy, befriending services and support within the criminal justice system all have the potential to improve outcomes for people with autism (23), although provision of them is patchy.