Improving access to social care for adults with autism

New support from the Social Care Institute for Excellence

Half a million adults in the UK currently live with autistic spectrum conditions. Autism presents a challenge for social care workers, not least because it can affect people in very different ways, with some people severely disabled by the condition through to others who are only mildly affected.

Meeting the needs of people with autism requires a good understanding of the condition itself, plus a willingness to get to know the particular needs and circumstances of each person. This is needed so that support can be properly personalised. Social care workers have an important role to play both in supporting people to engage with the wider community, and in leading the effort to make the wider community a more accommodating place for people with autism.

Case study

Scott is 46 years old and has autism and a learning disability. He spends the week living in his own flat with round-the-clock support from care workers, and weekends with his parents who live nearby and visit frequently. Scott needs ongoing help and support to enable him to interact with other people to remain calm and settled. He relies on a series of daily rituals, and gets easily upset by other people’s words. When he is upset, he tends to self-harm, and he needs the people around him to provide comfort and reassurance.

People who work with Scott need to have a good understanding of what his behaviour means and how to respond, so that he can manage his daily life and go out and about in the community. He has had bad experiences in the past with residential care staff who expected him to be able to change behaviour they found challenging. But staff who work with him now have a good relationship with his parents, who are the ‘experts’ in how Scott feels and acts, and everyone around him understands what he needs. His mother’s message for social care staff is simple: “Treat the person the way you’d like to be treated yourself.”

Barriers to social care for people with autism

The Social Care Institute for Excellence (SCIE) has produced a new guide for frontline, managerial and commissioning staff to enable them to understand people with autism better, and tailor services to their particular needs. The guide is based on research carried out by SCIE and the University of Sussex with people with autism and their families.

SCIE’s research found that people with autism and their families often face a battle to get the care they need. Hugh Constant, the guide’s author, says: “The social care system can be complex and set up in ways that exclude or alienate people with autism. Problems are even worse for people whose behaviour is seen as ‘challenging’, or who have needs that cross the boundaries of several different services.”

So there can be a lack of awareness of autism, in general, among social care staff and other professionals. (This may reflect a wider lack of understanding in society of the condition.) Autism is largely ‘invisible’, with few obvious physical signs. In addition, the degree to which some (but not all) people with autism can be talented or articulate can lead professionals to assume they don’t need any type of care or support. As a result, staff carrying out assessments may not understand the effects of autism well enough to assess accurately what a person’s needs might be, and how these might be met most effectively.

Making social care more accessible

SCIE says that social care needs to become more accessible to people with autism, from assessment through to the way that services are provided and reviewed. This may mean adjusting assessment processes, so that people can engage with them more easily – perhaps by allowing more time, or finding different ways of communicating, or being aware of sensitivities to noise or light.

• But much of what helps make services accessible to people with autism is also key to all good social care:
  communicating clearly,
  
• being reliable and consistent,
  
• getting to know people as individuals and being accepting of them.

Specialist autism services (such as employment services, day provision or care management) are often more accessible for people with autism, and should be part of a locally available range of services. These should sit alongside good mainstream services that are able to support people with autism, as well as services that enable people to live with their families or to live independently, rather than in residential care.

Working jointly across services

Joint working is essential for people with autism, as social care is usually just one part of a wider service landscape. People with autism also need health services, housing, jobs and benefits – all of which can, like social care, be hard to access. Joint working is particularly important at the point when people with autism move from children’s to adults’ services. Good transition planning is essential to ease people’s anxiety and reduce the likelihood of emergency residential placements.

The key tool for joining up support in English local authority areas is the Joint Strategic Needs Assessment (JSNA). The National Autism Strategy requires all authorities to appoint a local lead commissioner for autism, who must ensure that the JSNA is based on accurate, up-to-date information about the needs of local people with autism.

Intervening early enough

Some of the difficulties that people with autism face can be addressed most satisfactorily by relatively low-level (and inexpensive) services – help with tasks like bill-paying and form-filling, for example, or support with social skills to help people cope and prevent social isolation. What constitutes the right social support will vary from person to person.

For people with more complex needs or with challenging behaviour, the best option both for people with autism and for their families is often intensive support at home, coupled with good respite services – thus avoiding expensive residential care, which may not be what people want or need.

Offering personalised support

Individuals with autism often have complex needs that are hard to meet in group settings. Instead, they need flexible, individually-tailored services, provided by staff who really understand them.

There are challenges in ensuring that people with autism get the best from personalisation: they may struggle to convey their needs accurately on a generic self-assessment form, or may find it difficult to manage the details of employing their own personal assistants. Resource Allocation Systems (RASs) need to allow for high quality support from staff with expertise in autism, and should cover brokerage costs. People with autism can benefit from various forms of personal budgets, including direct payments, personal trusts, individual services funds and care-managed budgets.

Key messages for practice

• Understanding autism as a condition is important, but this has to go hand-in-hand with understanding each individual person with autism
  
• A better understanding of autism among social care staff can help people get a diagnosis and get timely, appropriate support after diagnosis
  
• Staff may need to make adjustments in the way they work so that services can be more accessible for people with autism
  
• Commissioners of services need to be flexible and collaborative in meeting the needs of people with autism, especially those whose behaviour presents a challenge to traditional services
  
• People with autism need particularly good support during significant life-changes
  
• Support with social interaction and the tasks of daily living can meet the needs of people with autism at relatively low cost
  
• Social care staff should work closely with family carers of people with autism, recognising both that they know the people they care for extremely well and that those people may need services and support in their own right

Further information

SCIE (2011), Guide 43, Improving access to social care for adults with autism 
 
SCIE (2011), At a glance 49, ‘Improving access to social care for adults with autism’.

Social Care TV, ‘Working with people with autism: the autistic perspective’

Social Care TV, ‘Working with people with autism: the professionals’

Taylor, M and Marrable, T (2011), ‘Access to social care for adults with autistic spectrum conditions’, London: SCIE and University of Sussex.

Department of Health (2010), ‘Fulfilling and rewarding lives: strategy for adults with autism in England’.

Improving access to social care for adults with autism – references