(Left to right: Social worker Sue Walsh, commissioning officer Scott Hall and social worker Bertram Reid.)
The challenge of supporting adults with high-functioning autism, including the need for in-depth assessment, has convinced one council to set up a specialist team to cater for them, writes Natalie Valios
“In Cornwall, as in most places, a group of people with autism have been largely invisible – mostly those with Asperger’s syndrome or high-functioning autism,” says Scott Hall, the council’s commissioning officer for adult care and support, and its autism lead.
Traditionally, adults with autism have been referred to learning disability or mental health teams but, often, the services provided by such teams was inappropriate. Two cases in particular, referred to social workers Sue Walsh (see below) and Bertram Reid, highlighted to Hall the need to develop a team of specialist social workers for clients with high-functioning autism or Asperger’s syndrome. There are only a handful of such teams nationally.
The plan builds on work the council has been doing with the National Autistic Society in training staff in autism awareness, as part of its local autism strategy.
Twenty social work assessment staff have had in-depth training in building relationships with clients so that they can properly assess their needs.
A business plan is being developed to set up the specialist team, for both diagnosis and assessment.
There will be a phased approach: phase one will involve an internal restructure to create the team of two or three social workers; phase two will involving securing money for a team manager and support staff. It is difficult for the council to know how many potential service users there are in the area because they have been invisible but national prevalence figures suggest 7,500 people with autism, and Hall estimates that at least half will have Asperger’s or high functioning autism. “What we do know is that we are finding more and more people with autism,” he adds.
The council is looking to have phase one in place by April 2012 and phase two following shortly afterwards. Where service users have an assessed need and are eligible, the aim will be to use personal budgets.
Reid, an agency social worker, backs the case for a specialist team. When he was working in the council’s older people and physical disability team he was sent a referral for Paul*, a 19-year-old man with Asperger’s, because he needed an adult social care assessment and there was nowhere else to refer him.
“My major concern was that he was only 19 but was socially isolated which could have an impact on his mental health and emotional well-being,” says Reid.
Reid made six assessment visits, most lasting two hours – compared with the more usual two visits for other clients. While Paul was articulate and intelligent and on paper looked like he could cope, once Reid started delving into what life was like for him all sorts of issues emerged. For example, Paul had a lot of anxiety that he would have a heart attack when he was on his own although he had no heart condition; he was too anxious to go out to shopp; he wanted to socialise and join a gym but didn’t know how .
Paul now has a personal budget of £125 per week and has employed a personal assistant to help give him structure to his life, access the gym and the community and encourage him to build up daily living skills to prepare for his goal of going to university.
Reid says: “We could do some cracking work with a dedicated team.”
* Not his real name
‘Proper assessment allowed Robert more support’
When Sue Walsh, a social worker in Cornwall’s learning disability team, went to assess Robert* she realised there was a dichotomy between what she had read about his ability and what she saw. Robert, who had high-functioning autism and lived on his own, received seven hours’ support per week from a community care assistant but, as an enablement service, it was time-limited.
“I felt that he needed further assessment to inform me of the level of support he needed and I did seven visits. The assessment tool we used didn’t seem to address some of the specific issues I was coming across, so I did some research and came across the National Autistic Society’s assessment tool.
“This looked at things such as the ability to eat and drink. In practical terms, Robert could eat and drink but he wouldn’t eat anything in his kitchen if it was red, such as tomatoes or even anything from a cereal box with red on it. If anything wasn’t in the right place or there was a tiny deviation his whole life came to a halt. He once stood in the rain waiting for a bus for five hours because he didn’t know what to do when it didn’t arrive. He goes to one supermarket and he is thrown when the displays are changed.
“So I needed to do a really thorough assessment to learn about the impact of autism on his daily life. Because he was so high functioning he wouldn’t have ordinarily met our eligibility criteria, but he met the criteria that gave him access to a personal budget so his support effectively more than doubled, giving him £254 per week so he could employ a personal assistant.
“It has opened up his whole life and with much less stress because there is no worry that the service will be taken away.
“In cases like this it’s vital to have a good assessment tool, but you have to have finely tuned assessment skills to be able to pick apart what they are telling you because no assessment tool will go into the depth that is needed.”
Lessons from a specialist team
The Nottinghamshire Adults with Asperger’s Team was launched in January 2009 delivering social care support to individuals in the county and their family carers. Here, the team describes its successes and challenges.
We have 4.5 full-time equivalent staff plus a manager and administrative support. We commission provider services or work alongside service users in determining the way they wish to manage and spend their personal budgets.
The team has been responsible for more than 300 autism-specific assessments and has a caseload of 180 people. This represents more than10% of the prevalence of adults with Asperger’s in the county, which, according to a National Audit Office analysis, indicates that the team is effectively cost-neutral.
The team acts as a focus for specialised expertise available to other county teams and as a source of data and advice for further strategic planning of services. Individuals assessed and supported have the benefit of input from professionals who have been specifically trained and are experienced in understanding their particular needs and in developing shared support plans for their personal budgets.
The team was established with the intention of becoming multi-disciplinary and having a diagnostic function with a composition similar to the nationally recognised Liverpool team. However, although we still aspire to this model, we do not have clinical professionals co-located with us and are reliant on accessing psychology, speech and language therapy, occupational therapy and psychiatry through generic NHS services.
Our advice to our Cornish colleagues is to adopt an integrated team approach if you can gain buy-in from social care and health, but our experience shows that even an exclusively social care team can make a major difference in improving services to adults with Asperger’s syndrome and high-functioning autism.
(Pic: UNP/Chris Saville)
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