Improving access to social care for adults with autism
Barriers to services for people with autism
A perplexing juxtaposition of ability and disability and an absence of usual development alongside the presence of the unusual ... is the cause of much misunderstanding of the nature of ASC, affecting decisions about help and support. (6)
Fundamental barriers exist for people with autism in engaging with the world around them. Many experience that world as chaotic and complicated, where people communicate in confusing or upsetting ways, and everyday places such as supermarkets, streets and hospitals can be forbiddingly noisy or unpredictable. It is not a world designed by or for people with autism. Until that world makes genuine efforts to accommodate people with autism, by understanding the condition, and making adjustments accordingly, then barriers to accessing it will remain.
Our work with the University of Sussex into the particular obstacles to accessing social care highlighted these fundamental barriers. It also showed that for many people with autism, and their carers, it is a wearying battle to get the social care they need (7). Difficulties can be even greater for people with autism who display behaviour that challenges services, or who have needs that cross the boundaries of several different services. People may get support from one committed professional, whose helpfulness appears to be in spite of the system in which they operate (7), but the system itself is seen as ill-informed, complex and set up in ways that exclude or alienate people with autism.
- a lack of awareness about autism, among some social care staff, other professions and society generally
- the 'invisibility' of autism as a condition. People with autism do not have obvious physical signs of it, and are sometimes therefore thought to interact in ways that are simply odd, ill-mannered or alarming
- disability and benefits legislation (8), which sometimes seems shaped by a sense that a disability must have a physical manifestation. It also relies heavily on good social communication and social interaction skills when completing forms or taking part in assessments
- the degree to which some people with autism can be talented and, particularly if they have no learning disability, very articulate. This can lead professionals to assume that they do not need social care or support
- the blocking of people with high-functioning autism or Asperger's Syndrome from social care, because they have do not have an IQ of 70 or below, the cut-off point for most learning disability services, or a severe and enduring mental illness, which excludes them from mental health services
- many services, such as drug and alcohol services, not feeling confident in offering a service and trying to refer people with autism to specialised services. These specialised services are scarce, and can be geographically or financially difficult to access
- many social services having introduced generic teams, which have separate teams for initial assessment and for ongoing care. This lack of consistency in staffing can be difficult for people with autism.
People with autism who do have a learning disability are generally supported by learning disability services. Here, they are assessed as to whether their needs are sufficiently critical or substantial to require services, under guidance on prioritising social care (9). Often this works well, but assessors sometimes lack sufficient awareness of autism to do the job properly. The paperwork used - assessment forms, or Resource Allocation Systems, which allocate funds for personal budgets* - can be too blunt to pick up the complex needs that people with autism sometimes have. They can also rely on good communication skills, and the insight, willingness and confidence to disclose personal details.
Some people's needs can be met creatively and flexibly, and in ways that are not expensive. Some people with autism do have really complex needs, though, and meeting them can involve skilled staff or intensive support. This can be costly, and under-funded care packages are another barrier to a good quality of life for some. This is a concern at a time when councils/trusts are having to reduce what they spend.
Fulfilling and Rewarding Lives is the national strategy for England aiming to address some of these barriers, and it is this that we look at next.
* Personal budgets do not operate within Northern Ireland, however direct payments are provided.