Improving access to social care for adults with autism
How to overcome the barriers at an organisational level
I've worked with guys who needed very intensive transitions and multiple visits getting staff to build positive relationships with them where they are before they come to us, introducing all kinds of augmentative communication tools to try and ease things... At the other end I've worked with people who could not tolerate knowing something was going to happen but it not happening and working to very very short transition deadlines, one guy came to us ... his parents brought him and the first he knew that he was moving was when he got out the car at our place, but that worked ok for him because that's what he could handle.Manager, residential home (7)
Managers and commissioners need to take advantage of the opportunities available in the changing social care system to enable people with autism to make use of personalised services. Policy in England, including 'Putting people first' (51) and Think Local, Act Personal(13), call for a universal offer of advice and support in finding appropriate assistance, so personalisation in its broadest sense ought to have something to offer even those people with autism who do not have eligible needs under Fair Access to Care System. And 'Fulfilling and rewarding lives(10), as we have seen, will bring more people with autism into the social care system, and give them the chance of a personalised package.
Resource Allocation Systems* need to allow for high-quality, flexible support, and should cover the costs of brokerage (55) and allow for staff and organisations with expertise in autism to be purchased if necessary (56). The local leadership that the strategy sets up will need to try to make sure that this happens (11), and also that Resource Allocation System-based provision is not so slow to set up as to cause undue anxiety to people with autism.
Local leaders also need to set out where people with high-functioning autism or Asperger's Syndrome, who have often been denied services, get the personalised support they need under the strategy. Personalisation has been cited by the government as the means to stop people falling between the gaps in services (11), and local areas will need to choose which social work team people who have autism, but no learning disability or significant mental health problem, go to in order to receive social care, whether delivered by a personal budget or in more traditional ways.
The Right to Control pilots, currently being led by the Office for Disability Issues (57), aim to unify various funding streams, to create personal budgets that are more flexible because they cover more of a person's needs. This is potentially beneficial to all social care users, but by bringing together several sources of funding into one place, people with autism, who may have complex needs and difficulty making sense of bureaucratic systems, stand to be particularly well served (58).
For some of the bureaucratic hurdles involved in personalising one's support to be overcome, advocacy and independent brokerage will need to be available to people with autism (23), alongside good-quality information about choices and options. And, of course, information about the options is not enough: people with autism need the options to be good quality and varied, and to include well-trained personal assistants who understand autism, and who can understand them (30).
Developing a local structure for personalised services can best be done in partnership with people with autism and their families, in line with the recommendations of Fulfilling and Rewarding Lives(10) and the'Autism strategic action plan for Northern Ireland' (19). User-led organisations can also help develop acceptable services for people with autism to purchase (59).
Options about the different ways in which personalised services can be accessed need to be provided. People with autism are likely to benefit from some more managed forms of personalised budgets, such as:
- personal trusts, in which money is held by people close to the user
- direct payments, which have a longer history of enabling choice and control for people
- individual service funds, in which a service holds a budget on behalf of, and for the sole use of, a person with autism
- care-managed budgets, in which a person's budget is overseen for them by care managers (56).
Local advocacy services with an understanding of people with autism need to be available to ensure that people with autism receive good-quality advice about the options, and social care staff need to be familiar with the Mental Capacity Act 2005 (or relevant mental capacity legislation in other parts of the UK) as a way of ensuring that people with autism are properly and legally supported to make decisions.
Personalisation has potential for people with autism. However, it is not so well established as a beneficial method of service delivery that its merits should be taken for granted. By its nature, it ought not to be introduced as a blanket policy, and how well it works needs to remain the subject of expert scrutiny (6).
* Resource Allocation Systems are not applicable in Northern Ireland.
- Social Care Institute for Excellence (2009) Mental Capacity Act resource, London: Social Care Institute for Excellence.