Tuesday, 1 March 2011

Letter to Archbishop of Canterbury, CofE, The Most Reverend Vincent Nichols, Head of the Roman Catholic Church and The Right Reverend John Cairns Christie, Moderator, Church of Scotland

To the Most Reverend and Right Honourable
Dr Rowan Williams
Archbishop of Canterbury

To the Most Reverend Vincent Nichols
Roman Catholic Church
To the Right Reverend John Cairns Christie
The Moderator, Church of Scotland

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. The vast majority of the ACT NOW core group live with autism 24/7. We are all volunteers living with autism while trying to ensure that the needs of our children and adults with autism are met.

The ACT NOW Campaign currently has over 8,000 supporters. We have 13 regional groups which includes a group in Scotland, Wales and Northern Ireland. We have 25 Regional Co-ordinators and our support continues to grow on a daily basis. We are also being supported by autism 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 (WCA) that are currently being rolled out across the UK are placing adults with autism at a huge disadvantage. These assessments are wrapped around the medical model of disability and are in effect discriminating against adults with autism who do not have a medical disability.

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. 

ACT NOW does not believe that any reasonable adjustments are being made for adults with autism in line with section 20 of the Equalities Act part 5.
Section 20 of the Equalities ACT - The third requirement is a requirement, where a disabled person would, but for the provision of an auxiliary aid, be put at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled, to take such steps as it is reasonable to have to take to provide the auxiliary aid.

Adults with autism are not being provided with an auxiliary aid to help them to communicate effectively.

There are now several MPs and members of the House of Lords and leading autism professionals who are supporting our National Call for Advocate/Communicators for every adult with autism who has to have a benefit review. An Advocate/Communicator would be an auxiliary aid and would fulfil Section 20, part 5 of the Equalities Act.

The WCA have been built around a model of assessment that was first introduced in the United States of America by a group called Unum, who were at one time a leading US disability insurance company.
Autism is a complex condition which is made up of three separate but very significant impairments. Anyone who has a diagnosis of autism will suffer significant impairments with communication, socialisation and imagination (which often presents as fixed and rigid thought patterns and behaviour). This makes autism difficult to ‘fit into’ any of the boxes which are usually occupied by other disabilities.

We do not seek to minimise the impact that other disabilities have but simply to raise awareness of the current plight of those who reside on the autistic spectrum and other adults who also suffer from complex conditions.
While we understand that reform might be necessary, we believe that in its present format the WCA places people with autism and other complex disabilities at a substantial 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.

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.

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.

People with autism lack theory of mind which means that those with the condition lack the ability to understand how other people feel, believe, what their intentions might be, or what it might be like to be someone else. In other words they lack the ability to place themselves in someone else’s shoes. This means that the person with the condition cannot always relate to themselves having a disability and this is part of their disability. If asked what type of work they could do it is likely that an adult with autism will find it impossible to visualise themselves doing anything which they have not directly experienced. This will result in raised levels of stress and anxiety for that adult.

ACT NOW is already receiving cries for help from adults with autism who are living in fear about these assessments.

The problem is made worse by the fact that real understanding of the condition by the relevant persons is low. In some ways it is a nightmare scenario involving people who 'cannot say' talking to people 'who don’t understand'. With this mix what are the chances of getting the right result?  It is not correct that claims of understanding of ASC are high. If this was the case then 85% of people with Asperger syndrome would not be unemployed.

Works Capability Assessments are a huge concern to us because we believe that adults with autism are being denied a basic human right and that is the help and support that they require to communicate effectively.
If an adult with autism were caught up within the criminal justice system they would be given an advocate and yet adults are not guilty of any crime only that they have a unique disability which does not fit into the WCA framework.

We wrote to Chris Grayling asking him to clarify what is included in the autism training modules that have been developed by Atos Healthcare and the DWP.  We also asked Mr. Grayling if the DWP and Atos are now skills based organisations and accredited/licensed trainers?

The response that we have received from Mr. Grayling has failed to reassure us that adults with autism who are attending these assessments will be assessed by someone who understands their complex condition.
Mr. Grayling has stated in his response to us 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.
Mr. Grayling states and it is unlikely that clinicians will have had any specific training in assessing disabilities in their medical training. He states that Atos assessors are specifically trained in the assessment of disability and that a medical disability analyst will be able to provide an accurate and consistent assessment of functional restrictions.

We find this statement very worrying.  Although clinicians may not have received any specific training in assessing disabilities, they are the people who often see the person with a disability on a regular basis. GPs and Consultants often know a great deal about a person which allows them to see how the disability is impacting on the life of that adult. It is also worrying that Mr. Grayling refers to medical analysts being able to assess the impact of a disability that is not a medical condition.

It is our understanding that the training that the Atos assessors have wrapped around autism is very limited and includes a DVD containing information about the condition. Autism is a vast spectrum and it requires a great deal of specialist training before the condition can be understood and accurately assessed.  It often takes years before it is possible to give a diagnosis of autism, such is the complexity of the condition. ACT NOW seriously doubts that the Atos assessors will have received in depth training that is essential before anyone can accurately assess someone with autism.

Autism is not an illness. Adults with an IQ of over 70 often do not meet the criteria to be seen by anyone who has 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’ (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 provision, many of whom are hidden within our communities unsupported.

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.  Furthermore the DWP need to be mindful of the fact that failure to provide appropriate support will further undermine self confidence and life chances of a group of people who are, without question, one of the most disadvantaged in our society.

ACT NOW believes that the welfare reform is breaking the covenant of care between people with disabilities and the welfare state, and that as a society the support that we have given to those with disabilities is being breeched.  We also believe that adults with autism are being treated less favourably because of their disability and this is a direct breech of the Equalities Act.

We would like to ask you to speak with the Coalition Government and ask them to give you an assurance that adults with autism will not be subjected to an assessment process which has not taken any of their complex and specific needs into consideration.

We look forward to hearing from you at your earliest convenience.

Yours sincerely

Carole Rutherford
Co-Founder & Campaign Manager

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