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.

Problems include:

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.