Wednesday, 23 February 2011

Letter to the DWP Select Committee

DWP Select Committee Members are: Dame Anne Begg (Chair) Labour, Harriett Baldwin Conservative, Andrew Bingham Conservative, Karen Bradley Conservative, Alex Cunningham Labour, Kate Green Labour, Oliver Heald Conservative, Glenda Jackson Labour, Brandon Lewis Conservative, Stephen Lloyd, Liberal Democrat, Teresa Pearce Labour
Dear Members of the DWP Select Committee

I am writing to you on behalf of ACT NOW (Autism Campaigners Together) a group of people passionate about the future and wellbeing of children and adults with an Autistic Spectrum Condition in the UK.  ACT NOW is run solely by volunteers the vast majority of whom are living with autism 24/7.

The ACT NOW Campaign currently has over 8000 supporters. We have 13 Regional Groups including a group in Scotland, Wales and Northern Ireland, 25 Regional Coordinators and our support continues to grow on a daily basis.  ACT NOW is also supported by autism professionals, groups and organisations that support families living with autism and adults with autism here in the UK. 

The Welfare Reforms and the Works Capability Assessments that are to be rolled out across the UK on February 28th are a source of huge concern for ACT NOW and our supporters. We believe that these assessments will place adults with autism at a huge disadvantage.  

ACT NOW believes that the WCA process is fundamentally flawed and unless the present method of assessment is completely overhauled, adults with autism and adults with other complex disabilities will continue to suffer and be punished for having a disability which does not fit into the current assessment framework.
These sentiments were echoed in an article published in the Guardian Newspaper Tuesday 22nd February where Professor Paul Gregg (economist and welfare reform expert) stated that a ‘rushed roll out of the work capability assessment will cause more anguish’ and that ‘the test is badly malfunctioning. The current assessment is a complete mess’.
We believe that unless the offer of an independent advocate/communicator is made to every adult with autism at the first point of contact, that the DWP are probably breeching the Equalities Act by failing to make reasonable adjustments for someone whose disability impairs both their receptive and expressive language, thus affecting every communication that they make.  

The very core of our campaign relates to how people with Autistic Spectrum Conditions will perform in assessments. Adults with Autistic Spectrum Conditions infrequently represent how their disability impacts on them accurately. These assessments are wrapped around the medical and social model of disability and are in effect discriminating against adults with autism who do not have a medical disability and who continue to fall between the cracks of the medical and social model of disability. 

After writing to Chris Grayling regarding our concerns we received a reply informing us that Atos assessors are specifically trained in the assessment of disability. He states that ‘the medical disability analyst will be able to provide an accurate and consistent assessment of functional restrictions.’ 

Autism is not a medical disability. It is a complex condition whose roots are firmly planted in social and communication impairments.  Autism is diagnosed using a triad of impairments which are communication, socialisation and imagination. It can take months, sometimes even years to obtain a diagnosis of autism. It is difficult to understand how after one assessment it will be possible for anyone who does not understand the complexities of autism to accurately assess the difficulties that that person may have in their everyday lives. 

Mr. Grayling also stated in his letter to ACT NOW that any additional medical evidence that is presented to the Atos assessor by an adult with autism will be treated as purely secondary information. He states that clinicians do not routinely consider the impact that a disability a person has will impact on their ability to function. This greatly worries ACT NOW and our supporters. 

It is our understanding that the Atos assessment is based on an assessment that originated in America and which was used by the Unum Unumprovident, Provident Life, and Paul Revere companies. We also understand that Unum Unumprovident, Provident Life, and Paul Revere companies have been named in almost 5,000 civil actions concerning insurance from 2000 to the present.

We are aware that problems that came to light with the assessment process were disabilities wrapped around mental or nervous disorders which could not be proven by hard medical evidence such as an x-ray. Autism is not a medical condition.

ACT NOW believes that it is both cruel and immoral to subject someone with autism to an assessment which does not in any way reflect the vastness of the autistic spectrum.

It is unquestionably the case that adults with autism often find it difficult to fill in the forms that are usually required to be completed prior to assessments. This is because it is not only their verbal communications that are impaired, but also all other forms of communication including written communication.

Given that it is highly likely that adults with autism will be placed at a substantial disadvantage by these assessments, it is vital that everything is done to support a person during the process. It is essential that the relevant public bodies are proactive in offering and supplying independent and meaningful support at the earliest opportunity.

ACT NOW has been told by adults with autism and their parents and carers that although they are informed that someone can attend an assessment with them, the person attending with them is not always allowed to speak on behalf of the adult. Some parents are reporting that they are not being allowed into the assessment room with their adult child. We have heard via one of our supporters whose daughter is almost non verbal, that while she was allowed into the room with her daughter during the assessment she was not allowed to speak. We find this very disturbing. Adults with autism require someone who can both interpret and communicate on behalf of the person with autism. Interpreters would be provided for anyone who could not speak English. We believe that adults with autism require the same type of adjustment to ensure that they can communicate effectively.

As Atos are part of a consortium which intends to bid for Work Programme provision contracts ACT NOW believes that there is a fundamental and irreconcilable conflict of interest here – part of which is the possibility of bias entering the DWP Medical Assessment, where Atos know that finding somebody fit for work might bring more business their way, whereas finding them unfit for work would not do so.  We have also heard that Atos have targets to meet for getting people off ESA benefit and onto Job Seekers Allowance.

Autism is not an illness. Adults with an IQ of over 70 often do not meet the criteria to be even seen by anyone who has an expertise in autism. It is only now that it has been stated in the Guidance which accompanies the Adult Autism Strategy ‘Fulfilling and Rewarding Lives’, issued in December 2010, that IQ must not be used as a reason to deny an adult with autism an assessment for services or provision. Thus there are huge numbers of adults who have been denied access to assessments for services and provisions, many of whom are hidden within our communities unsupported.   

There is currently no adult autism strategy in Scotland; provision is not statutory once someone with an IQ of higher than 70 reaches adulthood. Adults with an IQ of lower than 70 still have little support and have to fight for what they need. Who will support these adults and provide any additional evidence if required?  Only 7,500 people with autism are known to local authorities in Scotland although the National Autistic Society concluded that, including parents and carers, there are some 200,000 people affected by autism in Scotland. 

We believe that it is unlawful on human rights grounds to force disabled individuals with Autism and Aspergers Syndrome to engage in a process where they are substantially disadvantaged. We believe that being unable to communicate effectively could impact on the health and wellbeing of an adult with autism and the Equalities and Human Rights Commission agrees with us.

ACT NOW would like to request an opportunity to meet with the DWP Select Committee so that we can discuss with you, in person, the concerns that not only the ACT NOW core group has, but the concerns of many thousands who are living with autism everyday share. 

Carole Rutherford
Campaign Manager
For & On Behalf of ACT NOW (Autism Campaigners Together)

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