There Is An Elephant In The Room.

Adults with autism have left Act Now For Autism in no doubt as to how terrifying the idea (and reality) of having a Work Capability Assessment is. People are currently being migrated from Incapacity Benefit to Employment Support Allowance and generally are worrying themselves sick about the prospect of having a WCA.

To compound this, from April 2013 we will see PIP rolled out in place of DLA. Every adult who currently receives DLA will face an assessment and then have to wait for a decision about what level of PIP they will be awarded.

Act Now for Autism is very concerned about the importance of ‘supportive evidence’ for the WCA, and it would seem the DWP are going to require ‘supportive evidence’ as part of the PIP assessment too.

Without supportive evidence autistic adults stand to lose their benefits.

We know there are a significant number of autistic adults and those with Aspergers Syndrome who do not have the supportive evidence they are going to need for either assessment.

We believe this is one of the biggest issues that autistic adults and the autism community across the UK face and yet we appear to be alone with our concerns. No-one else is raising this nationally - we really are puzzled as to why.

There are concerns being raised about how evidence will be gathered and by whom, there are attempts to take it to judicial review. We believe the more important issue is what will happen to the significant number of autistic adults who will not have any evidence to gather?

Having no evidence to gather will be used against our adults.

In 2009 the National Audit Office published a report  Supporting people With Autism Through Adulthood:

"Around 200,000 adults with autism do not have a learning disability. This group often fails to secure appropriate support, as health and social care services are traditionally configured for people with a learning disability, a physical illness or disability, or a mental health problem (which autism is not)."
 
"Three quarters of local authorities said adults with autism who do not meet eligibility criteria experience or report difficulties accessing the services they require. Almost two thirds felt that current services for adults with autism are limited."

Three quarters of autistic adults and those with Aspergers Syndrome did not meet the eligibility criteria to access the services they required in 2009. There has been very little progress made to extend service provision for these adults since 2009 so where they get the supportive evidence they need?

Without Health and Social Care provision, autistic adults are left with only their GP's to oversee their care needs. Evidence from GP's will not be considered as supportive evidence as part of a benefit assessment/reassessment, Chris Grayling told us that.

There is an elephant in the room and the wrong strategy is being used to try to avert the consequences of it being there. What's more, the issue of 'supportive evidence' is going to catch out not just autistic adults and their families but others with hidden disability who don't require specialist input or care as well.

The Government want to cut/save 20% off the disability benefit cost. 

Potentially up to 200,000 autistic adults without supportive evidence are going to give them a good head start. 

More support for ACT NOW - this time from the Catholic Church!

ACT NOW Core Group are delighted to confirm that we have had a reply from the Catholic Church in England and Wales via Caritas Social Action Network.

They have confirmed their support for our campaign and have contacted the DWP regarding the suitability of the WCA in its current form for people with autism. Here is an extract from their letter:

“Many thanks for your letter to Archbishop Nichols, which was passed to me, regarding whether the Work Capability Assessment (WCA) format is suitable for autistic people. I share your concern at the current situation and support your efforts to address this vitally important issue.

In my capacity as Chief Executive of Caritas Social Action Network (CSAN) I have contacted the Minister of State for Employment, seeking assurances that no autistic people will be subjected to an assessment process that fails to fully appreciate their circumstances and needs. I have also requested confirmation that the concerns of autism charities raised during the 2010 WCA review will be taken into account and acted upon in the near future. I will of course forward a copy of any reply I receive.

Following consultation with our members I am pleased to lend CSAN’s formal support to ACT NOW and am happy for us to be listed on your website or in your literature as you see fit.

I hope this will assist your work and I wish you every success.

Yours Sincerely

Helen O’Brian
Cheif Executive
Caritas Social Action Network”

We really hope the Church of England and Church of Scotland will come on board too.

Friday Fun! time for a guessing game or a game of Simon Says!

Could the reply ACT NOW received below be a response to our letter to Chris Grayling about our concerns with the DWP factsheet ? how about you decide........let's hear YOUR thoughts!

DWP Factsheet: Support offered by Jobcentre Plus for customers with additional support and communication needs

Letter to Chris Grayling, Minister for Employment

Dear Mr Grayling

We are most concerned about the information that is being displayed on the DWP site for customers with additional support and communication needs http://www.dwp.gov.uk/docs/ib-reassessment-additional-support.pdf

The Factsheet states that ‘Customers will receive a letter from Jobcentre Plus telling them that their benefit is being reassessed. Jobcentre Plus will then call the customer to discuss how this change will affect them and to answer any questions.’  Adults with autism will need to be offered support and the opportunity to access an advocate/communicator before the phone call takes place.

The Factsheet continues ‘During this telephone call the customer will be asked if they have any additional communications needs.’ Without support an adult with autism may be unable to identify their own communication needs and being unable to identify and label how their disability impacts on their life is one of the problems that adults with autism face. Therefore it is absolutely essential that adults with autism require an advocate/communicator to be present with them when the phone call is made.

We acknowledge the fact that Jobcentre Plus will support a customer’s right to have representation but an adult with autism needs to be aware of this at the first point of contact. Arrangements then need to be put into place to ensure that support is offered in the form of either an independent trained advocate or someone who the person with autism is comfortable with and who they are happy to help them to communicate effectively.

The factsheet continues by giving specific information for customers for whom English is not their first language, customers who are visually impaired and customers with hearing and speech impairments. The factsheet excludes anyone who has a diagnosis of autism which is a recognised communication impairment.

The factsheet is totally inadequate and should be withdrawn until a proper system can be put in place before any contact is made by Jobcentre Plus.

Response from Chris Grayling DWP - Work Capability Assessments

Chris Grayling DWP response received 9/2/11 - Page 1

Page 2

Page 3

ACT NOW's reply to Mr. Grayling sent today

We thank you for your letter dated 8th February. We have also received a letter from Professor Harrington who tells us that he was copied into your response to our letter dated 18^th January.  We are copying Professor Harrington into this letter as well as Iain Duncan Smith and Anne Begg, Chair of the Department of Work and Pensions Select Committee.

ACT NOW seeks reassurance, as do our supporters, that in line with Section 20 part 5 of the Equalities Act an auxiliary aid will be provided for every adult with autism who is asked to take part in a Works Capability Assessment.  

Given that autism affects every aspect of communication, receptive and expressive as well as social communication, we believe that an auxiliary aid (which for an adult with autism would be an advocate/communicator) is a necessary reasonable adjustment. This would help to ensure that adults with autism are not put at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled. 

It is essential to ensure that all of the communication needs of adults with autism are met. We would also state that we believe that it is important that any auxiliary aid that is offered to an adult with autism will be independent and not part of the DWP.

Yours sincerely

-------------------------------

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 28^th 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 22^nd 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)

Welfare Reform – Thinking Outside of ‘their’ Box

We live in a society where people are neatly placed into the little boxes that have been created to ensure that we all have a box into which we fit.

The biggest issue that people with autism have always had is that they simply to do not ‘fit into’ any of the boxes which were created.

You would think that it would be a simple matter of making sure that they made a box especially for autism. That way autism would then have a space all to itself without forever having to be the ‘cuckoo’ in the disability nest. No such luck. For years and years children and adults with autism have been made, and continue to be made, to ‘fit into’ boxes which were never created with autism in mind.

The plans for welfare reform were rolled out today with the emphasis that this will be something that everyone can do, and that the vast majority of people who are on ‘sickness benefits’ could find themselves a job with a little bit of support, and quite a lot of money being given to, the people who will soon be rolled out to support them.

In a society where ‘personalisation’ has been the buzz word for quite a few years now there was not a hint of personalisation coming through in what ACT NOW has heard or read today. People with disabilities are all going to be forced into the same box and all measured with the same yard stick – Works Capability Assessments.

But how do you measure the disability of someone who has never yet fit into any one of the boxes that were already in existence?  You can not.

The WCA is not designed to wrap around anyone who has a complex 'does not fit into this box' disability.

Last week ACT NOW had a letter from Chris Grayling who assured us that the Atos assessors who will be carrying out the WCA have all been correctly and appropriately trained. This does not fit with the reports of how these assessments are working out for people with autism that are being received by ACT NOW.

Worryingly Mr Grayling also states that any additional medical evidence that is presented to an Atos assessor by an adult with a disability will be treated as purely secondary information.

Anyone else hear huge clanging alarm bells here?

Mr Grayling states that clinicians do not routinely consider the impact that a disability a person has will impact on their ability to function, saying that it is unlikely that clinicians will have had any specific training in assessing disabilities in their medical training.  Atos assessors are specifically trained in the assessment of disability and that these medical disability analysts will be able to provide an accurate and consistent assessment of functional restrictions.

The clue word here is ‘medical’. Autism is not a ‘medical’ condition. So are these disability analysts specifically trained in assessing disabilities whose roots lie in impairments which are wrapped around communication, socalisation and imagination? This is something that we will be asking Mr Grayling.

The reality is that the national roll out of the WCA will begin from 28^th February and adults with autism will be assessed using a yard stick which is not fit to measure their complex disability.

ACT NOW believes that it is cruel and immoral to subject any human being to an assessment which was not specifically designed to include their condition.

In an ideal world everyone who wanted to work would be able to do so. In the real world however it is estimated that only 15% of adults with autism do work. This is not because adults with autism are a workshy group of people this is because employing an adult with autism requires employers to ‘think outside of their box’ and provide the kind of support for an adult with autism that adults with other disabilities might not require.

It is not as simple as widening a door for an adult with autism or ensuring that there are suitably adapted toilet facilities for them to use. The adjustments that adults with autism require are much more personalised than that and that is where part of the problem for adults with autism who want to work lies. The reasonable adjustments that would have to be made for them are not the tick box adjustments that would have to be made for other people with disabilities to enable them to work.

While only 15% of adults with autism are in full time employment 40% of adults with other disabilities are in full time employment. This means that even within disability adults with autism are marginalised.

Surely somewhere in our BIG society there are people who can effectively think outside of ‘their’ box to ensure that people who have complex disabilities, who are amongst some of the most vulnerable adults in our society, are recognised as existing and that they will require a degree of personalisation.

People do after all come in all shapes and sizes and so should assessments. It must also be recognised that some people with disabilities will never be able to seek or successfully maintain employment. That does not make their life any less worth living – does it?

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

Letter to Chris Grayling MP Minister for Employment

Dear Mr. Grayling

Thank you for your letter dated 20^th January 2011, however we feel that you have failed to answer some of the questions we asked in our letter dated 13th December 2010.

We are pleased to be informed that the ATOS assessors are aware of the potentially disabling effects of impaired social interaction, language and communication skills in people with autism and that they are determined to assess customers with autism fairly and accurately.  Unfortunately your letter failed to give us an explicit assurance that all of the ATOS assessors are suitably trained, that the training is accredited and being overseen by an independent body.  Can you please assure us that this is indeed the case with all current ATOS assessors and will be true of assessors being appointed?

Every person with a diagnosis of autism has a significant communication and socialisation impairment; even those with Aspergers Syndrome who often are deemed to be more able than those with a diagnosis of autism. ACT NOW is being told about the inadequacies of the ATOS assessors, that they lack a basic understanding and awareness of the condition of their customers.  We are alarmed that assessors are even overturning professional medical evidence. We do have case studies in support of this.

In your letter you state that the Works Capability Assessment was developed in consultation with disability groups including the National Autistic Society. The NAS states however, as part of an introduction written for Professor Harrington (heading the Independent Review of the Works Capability Assessments for the DWP) that they, along with other organisations, have: 

‘experienced some difficulties engaging with the Department for Work and Pensions around welfare reform and at times, have felt that our attempts to influence the process have been limited, with little evidence that our concerns and objections have been considered, and yet our involvement in consultation has been used by government as a source of legitimacy for reforms.’

Professor Harrington has asked the National Autistic Society, Mencap and Mind to propose amendments for the WCA descriptors.

We believe that there are a great many factors to be taken into account when a WCA is undertaken on an adult with autism. The capability to work or the inability to be capable to seek or maintain employment, for some adults has been heavily influenced by the failure of the state to provide a suitable education and suitable health care, therapies and interventions for these adults, often throughout their childhood. There is substantial recorded evidence of systemic failure to provide suitable education, therapies and interventions for children with autism (see *1,2,3,4)

Even with Works Choice it is difficult to imagine that some adults with autism are going to be able to not only seek employment but also take up their place in a work environment, whilst lacking the basic skills denied them throughout their childhood, and without which it will be very difficult or in some cases impossible for them to successfully maintain their employment.

ACT Now has heard from adults with autism who want to work and some of whom have worked, that if they are finding it hard to cope with their employment and have asked their employers to contact Prospects (employment consultants offering advice, support and training to managers and their teams) their employers fail to do so, leaving those adults to fail again.

Both children and adults with autism find it extremely difficult to start over after they have experienced a failure in their lives, often requiring enormous amounts of support to be able to do so. The Autism Strategy, which many parents and adults believe will not make the difference that we had so hoped for, has not yet had the chance to bed in and so it is too early to determine if there will be any additional and maintained support for our adults in both seeking and maintaining employment.

Whilst ACT NOW understands that being able to record a WCA would undoubtedly be a step in the right direction, it does nothing to reduce the levels of stress or anxiety that adults with autism will experience prior to their assessment unless they are able to access, in their own right, appropriate support. ACT NOW has been speaking to adults with autism and organisations supporting adults with autism and we are being told that people are worried, some even terrified, at the prospect of WCA assessments.

There is a huge amount of stress and anxiety being experienced by adults who so far have not even been asked to attend a WCA, such is the fear factor that is surrounding these assessments.  Even the thought of an assessment is affecting their mental health. This of course is not being helped by revelations coming to light that there appears to be clusters of adults in some areas all being declared fit to work when from evidence on the ground, demonstrably they are not.

ACT NOW is making a national call for Advocate/Communicators for all adults with autism. We believe it is essential that all adults with autism are offered support, at the first point of contact, when it is known a WCA is going to take place. It is unquestionably the case that adults with autism often find it difficult to fill in the forms that usually are 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.

There are many adults in our community who no longer have parents to support them and who have not been seen by the medical profession for many years and so they will have no medical evidence that they can submit to the WCA assessor. Who will these adults be able to access for additional evidence about their condition on their behalf? 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, 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 and many adults are hidden within our communities unsupported.

ACT NOW must point out that it is unlawful to force disabled individuals with Autism and Aspergers Syndrome to engage in a process where they are substantially disadvantaged.   Furthermore, public bodies 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 has the support of over 8,000 members of the autism community. The overwhelming majority of our supporters either have autism or are the parents of those with autism, in other words people on the front-line all day, every day.  We speak on behalf of a considerable number of people and believe it would be most helpful if representatives from ACT NOW were able to meet with you to discuss what we believe to be justifiable and serious concerns about the Works Capability Assessments and the process leading up to and after these assessments.

Yours sincerely

*1 Schools fail autistic children - http://news.bbc.co.uk/1/hi/education/5350506.stm

*2 The Cost of Inclusion http://aim1he.wordpress.com/category/the-cost-of-inclusion/

*3 House of Commons Education and Skills Committee http://www.publications.parliament.uk/pa/cm200506/cmselect/cmeduski/478/478i.pdf

*4 Lamb Inquiry http://www.dcsf.gov.uk/lambinquiry/downloads/8553-lamb-inquiry.pdf

Response from Chris Grayling MP Minister for Employment

We have received a reply to our email letter from Chris Grayling, Department for Work and Pensions and are disappointed to learn that he will not be able to meet with us.  However, he has indicated that he will respond to us on our concerns and we will be pushing for a reply!

Letter sent via email to Chris Grayling MP, Minister of State for Employment, Department for Work and Pensions

Dear Mr. Grayling

I am writing on behalf of ACT NOW (Autism Campaigners Together).  ACT NOW was founded by seven parent carers and adults with autism in July of this year, following the June 22nd budget which announced the cuts to Local Authorities and PCTs and the proposed assessments that will be carried out on adults, and possibly children, who are in receipt of Disability Living Allowance (DLA) and Employment Support Allowance (ESA).  

The budget cuts and benefit assessments are a huge cause of concern, not only to the founder members of ACT NOW but also to the 6,000 members of the autism community who are actively supporting the ACT NOW Campaign.

On the 22^nd of November this year Anas Sarwar, Labour MP for Glasgow Central, asked you what training health care professionals carrying out the Works Capability Assessments receive on autism and if training forms part of their continuing professional development.  You responded to this question by stating:-

 ‘All health care professionals working for ATOS Healthcare who carry out assessments for employment and support allowance are issued with evidence-based protocols on mental health conditions, including information on Autistic Spectrum Disorders, as part of their induction training.

In addition, all health care professionals are required to engage in a programme of continuing medical education.  ATOS, in conjunction with DWP have developed a number of training modules in Autistic Spectrum Disorders to support this programme. These include a "learning set" on ADHD and Aspergers Syndrome for employed health care professionals, a distance learning module with accompanying DVD on Asperger Syndrome for sessional doctors and a presentation on Autism at a medical conference attended by all employed health care professionals in 2008.  ATOS have also developed and issued a further distance learning module for sessional doctors called "Life with Autism - seeing the individual" this year (2010).’

ACT NOW would like to have clarification on what is included in the autism training modules that have been developed by ATOS and the DWP.  We would also like to know if the DWP and ATOS are now skills based organisations and accredited/licensed trainers?  Who, if anyone, helped ATOS and the DWP to develop these modules?  Is the training being monitored and evaluated and who, if anyone, oversees the training and how often and when will this be done? Furthermore is this training mandatory and what legislation sets this out and how will the training be delivered and over what time frame? is there a deferral process? 

ACT NOW are very concerned by reports that we are receiving from individuals and groups regarding the ATOS assessors who appear to have had no appropriate training in Autistic Spectrum Conditions. We are being told that the ATOS assessors are not taking this evidence into account when making their decisions. We are aware that in one area alone 10 individuals with autism have been declared ‘fit to work’ after being assessed by an ATOS assessor. We have had additional reports from ACT NOW supporters of this happening in other areas.  ACT NOW would like reassurance that all of the ATOS assessors are suitably trained and that the training which they are receiving is accredited and being overseen by independent means.

We would like to request a meeting with you so that we can further discuss the concerns of the ACT NOW Campaigners and our supporters. It is vitally important that the autism community feel confident that our adults with autism will be assessed by professionals who fully understand the complexities of autism.

We look forward to an early response to this letter.