ACT NOW is ONE!

We are celebrating our first birthday in July! We are so pleased to have amassed 10,000+ supporters in that time, gathered many MP supporters and spent time at the Houses of Parliament representing the voice of the autism community across the UK. Our work goes on and we are will continue to march on, campaigning on your behalf alongside you.

To celebrate the end of our first year and to celebrate YOU we are launching our You Tube channel and are looking to you our supporters for video contributions. Do you want people out there to know something about your life, how cuts have affected you, your experience at the hands of ATOS or JCP? Are you a carer struggling with little or no respite? Do you have a positive story about living with autism you want to share? Please contact Teresa for more information.

We would also love it if you would write a guest blog post (this can remain anonymous if you prefer) about any of the same topics. We aren't looking for a masterpiece of writing, something written from the heart is all it takes. (We will of course accept a masterpiece of writing too!) Send any contributions to Teresa or contact her for further information.
 

This month it's over to you - what do you want people 

out there to know about your life?

  

Come on! ACT NOW and help us celebrate the end of 

a busy, productive year and the start of the next one! 

WE'RE MARCHING ON! 

Scotland - How Cuts Affect Real People

Carers Votes Count in this Election

Everywhere you look there are stories in the press about cuts to funding and services – but what does that mean to the people who use those services?

Cuts to local budgets are having a profound impact on the lives of unpaid carers, particularly parents of children with disabilities.  This is largely hidden from the electorate.  And many of the people affected are too tired – or too scared – to hold their heads up and fight for the support they need. 

Support enables families to stay together. Support prevents crises from developing and the need for statutory services to get involved in depth.  Bring into the mix the impact of welfare reform and the drive to reduce numbers claiming disability benefits – there is a tipping point for families and children affected and we are getting closer to it.

Carers’ charities and online campaigners are working together to ensure the voices of these unpaid carers and their families are being heard and responded to during the election campaign.

The Princess Royal Trust for Carers (The Trust) and ACT NOW (Autism Campaigners Together) want to raise the profile of families affected by autistic spectrum disorders. There are an estimated 50,000 people with autism in Scotland and their care is largely provided by unpaid carers, usually parents and siblings.  

The Princess Royal Trust for Carers work with parent carers across Scotland through the network of local Carers’ Centres. ACT NOW are a core group of people passionate about the future and wellbeing of children and adults with an Autistic Spectrum Disorder in the UK.  

With a live campaign on the internet and Facebook, ACT NOW are fighting the cuts to benefits, services and provision – particularly those being experienced by families affected by Autistic Spectrum Disorders.

 

Carers across Scotland save the Government millions – an estimated 1 in 8 people are caring for someone in Scotland. The Princess Royal Trust for Carers, ACT NOW and other campaigning groups want to highlight the horrific circumstances faced by parent carers across Scotland.  

Not recognising and supporting these families could lead to:

• Parents having to give up work to care for their children or just to enable them to take part in activities and events at school as numbers of personal assistants in school are cut.
• Children not being supported in class and unable to take part and learn – leading to under achievement, behavioural issues, children being excluded from school and in turn moving into a life of unemployment and poverty.
• Parents having lifelong caring responsibilities when young people do not achieve independence and the worry about what happens when they are no longer there to look after their adult children.

ACT NOW and The Princess Royal Trust for Carers are calling for the voice of these carers to be heard during the Scottish Election Campaign.  They are calling for existing MSPs and new candidates to lay out what they will do to ensure parents, like those outlined in the case studies below, are recognised and supported better and that children with autism have the same opportunities and life chances as their peers.

ACT NOW in Scotland have been recording the personal testimonies of people with autism and their carers who are being affected by cuts in service provision and by the Work Capability Assessment.  Part of the campaign focuses on challenging the lack of awareness that assessors from ATOS (contracted by DWP) have of autism. ACT NOW is campaigning for the rights of people with autism to have an advocate present from the first point of contact by the DWP.  They are also campaigning for greater input by carers and guardians during the assessment.

More widely, the proposed changes to DLA and the introduction of Personal Independence Payment (PIP) are sources of great concern.  Welfare reform will impact on these families in a hugely negative and life changing way.

ACT NOW are regularly hearing from parent carers who lie awake at night terrified because they don't know what will happen to their adult children, especially if their benefits and support provision is taken away, largely due to ignorance about autism. The health of carers when living with these pressures and strains daily is precarious, especially if they feel they and their children are being discriminated against and don't have a voice. Demand at Carers’ Centres across the country is increasing substantially as local cuts bite and the welfare reform agenda unfolds.  There are lots of warm words about the contribution that parent carers and unpaid carers make – this must be translated into firm commitments and actions.

Case studies

Parent in Edinburgh
Living with a very aggressive son (6). Child and Adolescent Mental Health Services have said they "don't have the resources to support them fully right now". This family is at crisis point and without help from a local charity, they probably couldn't have stayed together.

Parent in South Lanarkshire
Son's (23) Disability Living Allowance Care Component has been reduced from high to low upon review because review deems he doesn't need help to communicate, eat/drink and is not at risk of neglecting himself (amongst other things). None of that is in fact true and no professional who has had contact with this young man has been asked to verify any of his difficulties. This is despite his diagnosis and years of necessary support for these very issues. The parent is appealing but is really struggling financially to support her son as this reduction has meant the removal of her Carer’s Allowance.

Parent in Glasgow
Son (12) hasn't been in school (a specialist unit for children with communication disorders) since early February because there aren’t enough members of staff to ensure his safety. The education department has confirmed that new staff have been found, but can’t confirm when the child will start back in education again because those employees need to be trained. She has had to take legal advice because of poor communication and this has affected her ability to work.

Parent in Aberdeen
A single mum with three kids (one of whom has Additional Support Needs  and is in a special school). Her eldest boy who has Autistic Spectrum Disorder,  has been out of primary school (P6) for months because the school "can't cope" with him because of his challenging behaviour. They have had the police round nearly every day as neighbours complain and she has been advised to lock herself and her two other children away if her son "loses" it. She is at her wits end and has even asked Social Work to take her son into care. They refused as she has the support of her mum.

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?

ACT NOW Proposals to our Patron Jon Cruddas MP

Following our meeting at Portcullis House we have given a great deal of thought about not only the Work Capability Assessments and how they could be made autism friendly, but also how a default position for adults with autism, as well as any adult who has a lifelong complex disability, could be made possible.

The core group has, we believe, produced some proposals which would stop the Work Capability Assessment from placing adults with autism at a serious disadvantage. We have also produced some proposals which would be used to create a default setting for adults with autism who wanted to seek and gain employment without any fear of conditionality if their attempts to do so failed.
 
During the last seven days we have discussed our proposals with our Regional Co-ordinators and the 792 ACT NOW supporters who are active members on our Regional Groups. The response has been favourable and we have received no negative comments.
 
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 conditions to effectively determine the impact that the disability has on the person with the condition in a relatively short assessment process.
 
We believe that a radical overhaul of the assessment process is urgently required. Tinkering with the descriptors to decide who should be eligible for Employment Support Allowance 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 whom they are assessing.
  
We believe that the Department for Work and Pensions needs to urgently expand its LIMA system (Atos Origin’s Logic Integrated Medical Assessment information technology software) to encompass lifelong conditions like Autism, Down Syndrome, Cerebral Palsy etc and 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 that the person they are assessing.
   

Training on Autistic Spectrum Conditions should be 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. Being able to live independently is something that should be a higher priority than employment for some adults with autism.
  
For this reason we believe that it is essential that there is a default position available to adults with autism (and others with similar disabilities) 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.
 
Proposals for long term improvements to the system.
 
There is no reason why all of the assessments that an adult with autism may require (this could include community care and social care assessments) could not be carried out all at the same time under the supervision of a specialist body who is, importantly, not part of the DWP. These assessments could be carried out by a local Community Care Team; a similar idea has been suggested in relation to children with Special Educational Needs and how these are assessed. The outcome of the adult assessment would lead to a Disability Development Plan which would very importantly state the following
 
1. The person's disability and whether this was a statutory disability
 
2. How the disability impacts on them as an adult in relation to key areas such as well being, independence*, employability etc
 
3. What support they are entitled to both in terms of benefits and whilst at work in the form of reasonable adjustments and ongoing support.
 
4. Explore areas of employment that the adult with autism may be capable of doing, as well as what kind of reasonable adjustments and support would have to be put into place for that adult.
 
5. All of the medical needs of the adult would be listed. This is important as adults with autism often have co-morbidities and other disabilities in addition to their autism which impact on their autism and ability to function.
 
The Disability Development Plan could be reviewed for everyone after every 3 years.
 
There should be a mechanism to record significant changes with regards to disabilities and how they affect the relevant person. This may seem like a costly process but firstly it would be voluntary ( ie. if the disabled person did not want to apply). However if the disabled person wanted benefits or community care facilities we suggest it would have to be compulsory. It would be very beneficial to employers as it would give them more meaningful information about the disabled person.
 
Clearly the plan would have to be person centered and a great advantage over the existing system. We have no reason to believe that this way of assessing would not save money in the long run whilst ensuring that the disabled person was given the relevant support when needed.
 
* National Autistic Society Campaign ‘I Exist’ 2008 61% of adults with autism rely on their families for financial support with over 40% of adults with autism still living at home.
 
Do not hesitate to contact us if you have any queries.

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!

ACT NOW Letter via email to Ed Miliband (Leader of the Labour Party)

Dear Mr. Miliband

I am writing on behalf of ACT (Autism Campaigners Together) NOW.  We are a campaign and pressure group and have no political affiliation.  Importantly, we are not a charity and therefore are not constrained by the rules relating to charities when it comes to campaigning.

Our members and supporters overwhelmingly are people affected by Autistic Spectrum Condition (ASC) or parents and carers of children and adults with ASC.  We are on the frontline 24/7 and collectively have a pre-eminent knowledge and understanding of the practical issues those with ASC or their parents and carers face.

ACT NOW was born in July 2010 from concerns regarding the anticipated cuts in the Comprehensive Spending Review. An Impact Assessment Report was published by ACT NOW in October 2010 (report attached) based on 2,943 pieces of evidence received from parents, carers and adults with autism. We currently have over 7,500 named supporters for the ACT NOW Campaign and our number of supporters is growing daily.

We understand that the Labour Party wishes to re-connect with people.  ACT NOW is a frontline group who is connected to its supporters at grass roots level. While we do not provide any direct services we are the genuine voice of those in our communities disadvantaged through autism.

We are asking you to enter into a dialogue with us, not only in respect of our current concerns about the actions of the present government (and it has to be said the previous Labour administration), but also in the formulation of the Labour Party’s policies for the future.

Our current concerns include:

·         That there continues to be a frightening lack of understanding and expertise about autism spectrum conditions and how they impact on the lives of those with the condition and their families.

·         The unsatisfactory Autism Strategy and the inadequate, woolly Statutory Guidance for local authorities and NHS organisations published by the Department of Health in December 2010

·         The cuts being implemented by local authorities across a range of services which are impacting severely on the health and well-being of people affected by ASC and their families.

·         The process surrounding Work Capability Assessment (WCA) and Employment & Support Allowance (ESA). We have clear evidence that those making the assessments have little understanding of autism and the impact autism has on the ability to hold down a job. We are aware in one area alone 11 adults with Aspergers Syndrome have all been declared fit for work after being assessed by an ATOS professional.

·         Plans to withdraw Legal Aid for individuals wishing to appeal to Tribunals or the Upper Tribunal.

·         Lack of representation as a group of people with a complex disability. We are aware that there are no autism specific groups or charities working collaboratively with the Department for Work and Pensions who are currently consulting regarding the abolishment of Disability Living Allowance which will be replaced by Personal Independent Payment. 

Many of our supporters are literally sick with worry and foreboding at what the future holds for them. 

We hope the Labour Party shares our concerns and are willing to work with us to ensure a better life for those our organisation has been formed to support. We would like to meet with you and/or your Ministers so that we can enter into an open and meaningful dialogue with you and your party.

Yours sincerely

Carole Rutherford

Campaign Manager

For & On Behalf of ACT NOW (Autism Campaigners Together)

Email from the President of SAFE (Supporting Asperger Families in Essex)

I am the President of SAFE (Supporting Asperger Families in Essex), a local charity run by unpaid volunteers like me.  I run ASAP (Asperger Syndrome Adults and Parents).

So far I have ten adult members in North Essex reporting that following a Work Capability Assessment, they have been taken off long-term Incapacity Benefit and have been declared 'fit for work' despite supporting evidence to the contrary from Consultants, social workers and GP's.  This has left these adults in a state of despair and their mental health has spiralled down into deep depression.  Their families are also badly affected.

It is all too obvious that the ATOS healthcare professionals who carry out these Assessments have had NO appropriate training in ASC, and are not taking this evidence into account when making their decisions.

This is a shocking and discriminatory tactic to force vulnerable autistic people into looking for work which is not there, and setting them up to fail, thus increasing their sense of low self esteem.

I am doing what I can to raise awareness of this issue in Essex and have advised people to appeal against these decisions with ATOS and the DWP, but I fear their understanding of autistic difficulties regarding employment is zero.   I am deeply concerned.

Keep up the good work!

Our reply to SAFE

We are almost speechless and certainly shocked and disgusted. We are however sadly not surprised. Would you like ACT NOW to flag up what has happened in Essex? Have you written to any Ministers about what has happened? Also would you mind if we added it to our list of cuts and changes please?

We have heard that the ATOS health care professionals are going to be given a training module on autism. We are at the moment trying to find out what that module will include and who put it together. However clearly these assessments are up and running without any training being given to these assessors and this really shows that they neither care nor feel any responsibility towards people with autism enough to get it right.

We are at the moment trying to set up an ACT NOW network and are asking people if they would be willing to be coordinators because we want to gather as much information as we possibly can about what is happening in every area across the UK. I know that that is a tall order but we currently have 6000 supporters so we are hoping that we get a good response from them.

Please do keep in touch with us. We all need to act together if we have any hope of being heard, and we are afterall the people who are living with autism 24/7.