Letter to Professor Malcolm Harrington, WCA Independent Review, Department for Work and Pensions

Letter copied to Chris Grayling MP and The Autism Programme Board (Department of Health)

Professor Malcolm Harrington CBE
WCA Independent Review
Department for Work and Pensions
Floor 6, Section B
Caxton House
Tothill Street
London, SW1H 9NA

Dear Professor Harrington

We understand that you are at the moment carrying out an annual review of Employment and Support Allowance for the Government to look at how the assessment for ESA can work better for people with autism. We are aware that you have asked the National Autistic Society, Mencap and Mind to develop proposals for the Work Capability Assessment.

ACT NOW (Autism Campaigners Together) launched a campaign in July 2010 after the budget following the announcement that there were going to be cuts to Local Authority, Primary Care Trust and Health Authority budgets and reforms to the welfare system.

We currently have 8,000 parents and adults with autism supporting our campaign. In October last year we published an Impact Assessment Report to make clear the overwhelming concerns that parents, carers and adults with autism have regarding the proposed cuts and benefit assessments.

An important feature of the report was that it drew wholly upon the detailed written submissions of over 4,000 individuals affected by an Autistic Spectrum Condition whose views were sought when drafting our report. For this reason we are proud to say not only that our report is evidenced based but that the evidence has been obtained from those members of our society who can speak with genuine expertise on ASC’s.

Since ACT NOW was formed we have been inundated with concerns from adults with autism and their parents/carers who have either experienced a WCA or who are extremely anxious and stressed by the possibility of having to have a WCA. Having spent some time becoming familiar with the WCA and the Work Related Activity Group we have become increasingly concerned by the 'one size fits all' formula used to carry out these assessments. There is no evidence that any reasonable adjustments are brought into being for people with complex disabilities that may require additional help or support throughout the whole process of assessment.

We believe that in its present format the WCA will place people with autism and other complex disabilities at a disadvantage. It is not always apparent that someone with autism has a disability because autism can be a hidden disability and the needs of the person with the condition can fluctuate on a daily basis depending on their environment and levels of anxiety. It can be very difficult for someone who has not been specifically and specially trained in Autistic Spectrum Condition's to effectively determine the impact that the disability has on the person with the condition in a relatively short assessment process.

We feel that a radical overhaul of the assessment process is urgently required.  At the moment the assessment is not wrapped around a realistic works model. There is an overriding emphasis on what the person ‘can do’ as opposed to what they ‘can not do’ but it is almost impossible to decide what an autistic person can do without first understanding what they can not do.

Amending the descriptors to decide who will be eligible for ESA and what level of support they should get will not be enough to prevent adults with autism from being declared fit for work when in fact they are anything but fit for work.

While the descriptors may better reflect the needs of people with autism and other disabilities, they will not provide the assessor with the overview and insight into the condition that the assessor should clearly have if they are to reach an informed decision that will impact on the life of the person who they are assessing.

We believe that the Department for Work and Pensions needs to urgently expand its LIMA system (Logic Integrated Medical Assessment) to encompass lifelong conditions like Autism, Downs Syndrome and Cerebral Palsy and to produce a set of guidelines similar to the NICE Guidelines.  It is difficult to imagine how an assessment can be successful without the assessor being able to access information that will allow them to understand the condition of the person they are assessing.

We continue to be concerned about the training that ATOS assessors have received about autism and if in fact training on Autistic Spectrum Conditions is mandatory for all ATOS assessors.  

At the moment there are only 15% of adults with autism in full time employment. This is opposed to 48% of adults with other disabilities being in full time employment. While some adults with autism do want to work it must be recognised that for some adults with autism living an independent life without employment will be a positive outcome for that adult.

For this reason we believe that it is essential that there is a default setting available to adults with autism who try to seek and maintain employment and for whatever reason fail. Autism must be categorized as a high risk group, recognising that adults with this disability often find it difficult to seek and maintain employment.

We look forward to your earliest response on these matters.

Yours sincerely