Showing posts with label Professor Harrington. Show all posts
Showing posts with label Professor Harrington. Show all posts

Monday, 28 February 2011

Response from Chris Grayling DWP - Work Capability Assessments


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 18th 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
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Wednesday, 2 February 2011

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

Tuesday, 18 January 2011

Letter to Chris Grayling MP Minister for Employment

Dear Mr. Grayling

Thank you for your letter dated 20th 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