During the Welfare Reform Bill's third reading we wanted to remind all MP's about our concerns and the concerns of our supporters.

We at ACT NOW (Autism Campaigners Together) and our 10,000 supporters have many concerns about the migration from Incapacity Benefit to Employment Support Allowance including the Work Capability Assessment. Concerns we and our supporters believe all MPs must be aware of.

The evidence given by Atos Professionals and Professor Harrington to the DWP Select Committee is one area we want to discuss:

Atos made it clear that the Work Capability Assessment is not looking at specified conditions, assessors are not looking at any diagnosis that a client may have, they are assessing their functionality. One of the Atos professionals at committee said:

‘We are training people in the art of interviewing people. We are not diagnosing conditions we are there to see the way in which a group of conditions impact on someone’s ability to function.’

Autism is a pervasive developmental disorder, the dictionary definition of pervasive is ‘all-encompassing’ ‘enveloping’ ‘invasive’ ‘persistent’ ‘omnipresent’ ‘insidious.’ Autism as a pervasive disorder therefore impacts on the functionality of the person with the condition. Autism is a unique condition which requires a great deal of specialist knowledge to enable any professional to accurately assess the impact that the condition is having on the person.
The Atos professional continued:

‘The key skills that we need to have are communication, comprehension, the ability to be able to evaluate perhaps a lack of cognitive function in someone with potentially an autistic spectrum disorder so the evaluation is not about the skills of someone’s diagnosis but the skills about being able to assess and reflect someone’s mental cognitive or behavioural function.’

Are we now to understand that all Atos assessors have been specifically trained to effectively communicate with adults with autism?

There is no ‘one size fits all’ template for autism and this extends to communicating with adults with autism. Autism impacts on both the receptive and expressive language of the person with the condition, although the degree of impairment will differ in every individual. If an adult is having problems processing questions that they are being asked they may ignore the person who is asking the questions, have an emotional outburst or even stand up and leave the room so that they can escape.

Unless the person conducting the interview has autism specific communication skills enabling them to effectively communicate with the adult they are interviewing the probability is that effective communication will not take place.

The Atos professional also commented on the usefulness of the mental health champions now in place. While addressing a question that was asked about autism they stated:

‘I think that you are right to say the mental health champions will be a support in that one of the things that I am keen to see is how as we evolve through the period of the mental health champions, and that they are used potentially in a more pro-active way with a desire to learn more and more in the terms of someone wanting to run past a specific case with them.’

There are huge concerns being raised by some of our leading professionals working with people with autism across the UK that mental health professionals generally receive very little, if any, training specifically wrapped around the mental health issues associated with autism. This was an area of concern that was flagged up with the Department of Health when they were collecting information before writing the Adults Autism Strategy. How can we be sure that the mental health champions have received autism specific training so that they are able to provide support for an assessor who needs to discuss a specific issue that they might have after assessing an adult with autism?

So often there is a lack of understanding, support, provision and services for adults with autism resulting in those adults suffering mental health problems. Without a good overall understanding of autism it will be impossible to assess. It is imperative that MPs understand that although Atos assessors are looking at the functionality of a person, autism is a complex condition that often takes several years to diagnose. Therefore the person who is making an assessment of functionality must possess a good knowledge of the condition.

We have numerous other concerns regarding the Welfare Reform Bill especially the migration from Employment Support Allowance and the Work Capability Assessment.

Here is a summary:

It must be recognised that anyone who has a Autistic Spectrum Condition has an impairment in communication.

The literature provided by Jobcentre Plus for adults with additional support and communication needs does not include anyone who has a diagnosis of autism therefore having a diagnosed communication impairment.

We have evidence that reasonable adjustments are not being made for some adults with autism. The failure to do so is impacting on the mental health of these adults.

The process of communicating with adults with autism is seriously flawed and no reasonable adjustments are being made to enable adults with autism to communicate effectively throughout the process.

No support in the form of an advocate or communicator is being offered at the first point of contact by JobCentre Plus.

The Work Capability Assessment descriptors do not reflect the complex nature of autism.

Adults with autism are being inappropriately subjected to an assessment using a method of assessment that does not allow the complexity of autism to be accurately assessed.

Parents and carers are not being allowed to help their adult children communicate during their assessment.

The proposed changes to the descriptors will have a detrimental impact on people with an autistic spectrum condition.

It must be recognised that many adults with autism have been failed throughout their childhood by both education and health impacting on their ability to seek and maintain employment.

Adults who have been cast adrift without provision and services since leaving Children’s Services will have no supportive evidence to produce if they are asked to provide supportive evidence.

Assessment Centers are not meeting the sensory needs of adults with autism.

The self directed distance learning autism training received by the Atos assessors is woefully inadequate. The module is wrapped around Learning Difficulties and Autism. Not everyone who has autism will have a learning disability but everyone will have impaired communication skills.

Adults with autism will only feel confident with the assessment process when the method of assessment reflects their complex, specific and individual needs.

The DWP does not inform adults about the emergency rate which can be accessed if adult finds themselves in an appeal situation which we believe is neglectful.

The national roll-out for the migration process is we believe premature.

The morality of the bill is in question as we have summarised above, as are the methods practised by Jobcentre Plus and Atos. Aside from the impact on the people accessing the welfare system there are those who care for them and the impact welfare reform will have on them. There are an estimated 6 million carers across the UK saving the economy billions in care costs. Those caring for an adult child with autism are telling us daily that they are literally terrified about the changes to IB and DLA and the impact it will have on their lives and the people they love and care for. They are also right now living with cuts at LA level whilst living in fear, isolation and often poverty with little or no respite or support.

We hope all MP's will consider the concerns of the autism community  when the Welfare Reform Bill is read in Parliament again this week.

Yours sincerely

ACT NOW (Autism Campaigners Together) 

Carers Week 2011

ACT NOW (Autism Campaigners Together) is lobbying hard to ensure the voice of the autism community across the UK is heard by those in power during these difficult times. ACT NOW are lobbying hard for carers too as welfare reform and cuts to service provision is having a terrible impact on carers. Carers are often living close to breaking point, with very little sleep and often in poverty. Many are anxious and living in fear of looming changes and cuts, particularly the change to ESA and the WCA.

"Never doubt that small group of thoughtful, committed citizens can change the world; indeed it's the only thing that ever has." Margaret Mead

There are 6 million carers across the UK, saving the economy billions in care costs. Many are caring for someone whilst trying to maintain a job away from their caring duties - we talk to people every day who find day to day life a frustrating struggle which results in them feeling isolated and depressed. We want the people in power to sit up and really listen.


Check out the Carers Week website for information about events and support in your area or follow them on Twitter all this week.

ACT NOW will keep MARCHING ON for Carers!

 

ACT NOW is 'Marching on'
We're all in this together,
Standing up for Autism.
Will you stand up with us?
Keep up with us?
Join us?

See our website for information about how to support our campaign.   

We Need The Labour Party to ACT NOW!

Motivated by the Hardest Hit Protest, ACT NOW are today launching a national petition:

We Need The Labour Party to ACT NOW!

We urge the Labour Party to strongly oppose the Government’s Welfare Reform Bill in the same way they are vigorously opposing NHS reform.

The Coalition Government is committed to seeing the welfare reforms through and our only hope of changing the road ahead for Welfare Reform now lies with the Labour Party.

ACT NOW is committed to lobbying and working with any political party who is willing to listen to us about the effect the reforms are already having on adults with autism and their families.

ACT NOW welcomes Liam Byrne's recognition of the need to protect the most vulnerable in society as per his speech yesterday. (10/05/11) 

However, we still intend to write to him and Ed Miliband asking the Labour Party to:-

• Restore the welfare covenant to ensure that vulnerable people with disabilities are protected and not living in fear.
• Do not time limit ESA.
• Ensure that any method of assessing work capability is fit for purpose. 

We are asking the Labour Party to strongly oppose the Government’s Welfare Reform Bill as such reforms are breaking the covenant of care between people with disabilities and the welfare state.

We need your support to make sure this phase of our campaign is successful - we need YOU to sign and share our petition!  

We Need The Labour Party to ACT NOW!

 http://www.gopetition.com/petitions/act-now-urge-labour-to-oppose-welfare-reform.html 

We need the Labour Party to ACT NOW!

Motivated by the Hardest Hit Protest, ACT NOW have decided to launch a national petition (We Need The Labour Party to ACT NOW) tomorrow (11th May) urging the Labour Party to strongly oppose the Government’s Welfare Reform Bill in the same way that they are vigorously opposing the NHS reform.

The Coalition Government is committed to seeing these reforms through and our only hope of changing the road ahead for Welfare Reform now lies with the Labour Party.

ACT NOW is committed to lobbying and working with any political party who is willing to listen to us about the effect the reforms are already having on adults with autism and their families.

Tomorrow we will be writing to Liam Byrne and Ed Miliband and asking the Labour Party to:

• Restore the welfare covenant to ensure that vulnerable people with disabilities are protected and not living in fear.
• Do not time limit ESA.
• Ensure that any method of assessing work capability is fit for purpose. 

We will be asking the Labour Party to strongly oppose the Government’s Welfare Reform Bill as such reforms are breaking the covenant of care between people with disabilities and the welfare state.

We will need your support to make sure this phase of our campaign is successful - tomorrow we will launch our petition ‘We Need The Labour Party to ACT NOW' and we need YOU to sign and share it! 

ACT NOW IS STILL MARCHING ON!

Today marks the end of Autism Awareness Month - we're MARCHING ON!

ACT NOW is 'Marching on'

We're all in this together,

Standing up for Autism.

Will you stand up with us?

Keep up with us?

Join us?

"Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it's the only thing that ever has." Margaret Mead.

ACT NOW attended All Party Parliamentary Group Meeting on 27th April

ACT NOW core group members Carol, Anna and Mavourneen attended the APPG meeting on 27th April. The meeting was packed for this joint meeting with other APPGs including the APPG for Autism, Disability, Learning Disability and Eye Health and Visual Impairment.

The first half of the meeting was chaired by Charlotte Leslie MP(Chair of the All Party Parliamentary Group for Autism) but she had to leave halfway through and was replaced by Robert Buckland MP who is Treasurer of the APPGA and who himself has a child with autism.

Iain Duncan Smith did not attend but Maria Miller MP (Minister for Disability) did and spoke about the Welfare Reforms. She confirmed the Government will not be removing mobility component from people in residential care, it will be incorporated in the PIP roll out. 

Maria Miller took some questions and there was a great depth of feeling throughout regarding the level of anxiety being experienced by people with disabilities over the welfare reforms. Several people were very vocal in their dissatisfaction and anxiety. However, Maria Miller only attended for approx 30 minutes as she had another meeting to attend.

At this point a representative from MENCAP addressed the room followed by our Campaign Manager Carole who started her address by informing the meeting that she has two sons with autism. She said that her eldest son has a diagnosis of AS, which is deemed to be the highest functioning form of autism, while the youngest has a diagnosis of autism, and yet it is her eldest son who faces the most significant stress and anxiety in his daily life.

Carole gave an account of how her eldest son struggles to communicate and the problems that he has had accessing the welfare system. She also spoke of the anxiety and stress that her son was experiencing just knowing he has to have a WCA and how this is impacting on his mental health. Carole said that adults with autism do not 'do' uncertainty. Knowing that he will have to face an assessment but not knowing when is placing her son under a huge amount of stress. Carole also pointed out that her son had been without services and provision from leaving Children's Services when he was 16. She said that for 8 years her son had seen no one and that when his DLA was reassessed 3 years ago their GP could find no one in the North East  willing to see her son. Carole asked who could they call on to provide supporting evidence for her son after his WCA. Robert Buckland was visibly moved by what Carole had to say and went on to say her speech had been very powerful indeed.

Margaret Curran MP, shadow minister for Department of Work and Pensions spoke about the inadequacies of the welfare reform and her resolve to oppose many of the changes.

During the question time Mavourneen spoke about the ATOS assessment descriptors on behalf of ACT NOW and regarding Jobcentre Plus staff recently striking over being given a maximum of 16 minutes to carry out their initial telephone interview preceding any further assessment or questionnaire. She spoke about her son (who is 19) and explained it had taken her 16 years to get her head around his autism, so how can someone with possibly no knowledge of autism judge whether an autistic adult is fit for work/further assessment in less than 16 minutes.

Anna spoke about her two sons and stated that no matter what her sons had required from being diagnosed with autism the state had never been able to supply any of it. Anna said that she has learnt that if her sons need something she has to build it up from scratch and supply it herself. She said that she had been told her two sons were the only two boys with autism where she lived and yet when she opened her first school parents were queueing up for places.

Anna said that as her children had grown she had met the challenge of meeting their needs and has now opened two schools, a college and a residential home and went on to share that she had 3 hours respite removed from her youngest son when she opened her first school and was told that she no longer required respite because he now had a school placement.  Anna told the meeting that as long as she was alive she would continue to fight to meet the needs of her sons and also to help families within the autism community to help their children and adults because she knew that unless we did this ourselves it was not going to get done.

After the meeting Anna and Carole were told that Robert Buckland was impressed with what they had brought to the meeting and would be asking for a meeting with the Minister, himself along with Anna and Carole.

There was no doubt by the end of this meeting the depth of feeling about proposed welfare reforms, migration to ESA and use of ATOS assessments. We hope some of what was shared in the meeting has a deep impact on the people who count.

ACT NOW (Autism Campaigners Together)

Lots to do - we're MARCHING ON!

On Wednesday 27th April the All Party Parliamentary Group for Autism (APPGA) is holding a meeting in the House of Commons to discuss the Welfare Reforms. Iain Duncan Smith has been invited to attend. Carole Rutherford (our campaign manager) is an advisory group member of the APPGA has been invited to speak at the meeting - she has accepted the invitation. She will be speaking as a parent of an adult with autism who may be affected by the welfare reforms and will discuss the potential impact on her son’s life. Anna Kennedy and Mavourneen Moore will be attending this very important APPGA meeting on behalf of ACT NOW.

Anna Kennedy will also be attending the live Channel 4 debate on May 11th 'SPECIAL EDUCATIONAL NEEDS STATEMENT: IS A NEW APPROACH NECESSARY?' The new system aims to empower parents and remove unnecessary bureaucracy: however, will replacing statements give parents more control over their child’s care and development, or does it remove a supportive infrastructure that helps them navigate services and find the right help for their child? A panel of MPs including Sharon Hodgson (Education Minister) will debate this important issue.


Lots to do - we're MARCHING ON!

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.

Correction and apology to the National Autistic Society:

The National Autistic Society (NAS) has been in touch to make us aware of an inaccuracy in a letter written by Terry Rutherford (ACT NOW Area Co-ordinator for the North East of England) to the DWP, with a copy of the letter being sent to Julie Elliot MP.

NAS were made aware of our error by the Department of Work and Pensions.

The letter from Terry states:


"I am also very concerned about the current review being carried out by Professor Harrington. It is my understanding that the leading charities (the National Autistic Society, Mencap and Mind) have now unanimously dissociated themselves from the internal report This does not bode well for the recommendations in Professor Harrington’s report
which is due in the summer."

NAS have made clear to us that the Internal Review which was done by the DWP last year  is the review that they are were not happy with. The points in our blog about the descriptors apply to that review, which were opposed in parliament by the NAS.


NAS are supporting the Harrington Independent Review and believe it contains useful recommendations, which should make a difference. The NAS were asked asked along with Mind and Mencap to develop some recommendations to improve the WCA descriptors, which they have now done as part of their work with the DWP. Their proposals can be viewed here:


http://www.autism.org.uk/en-gb/news-and-events/news-from-the-nas/nas-opposes-changes-to-wca-in-parliament.aspx


ACT NOW would like to apologise to The National Autistic Society for making such a mistake.
 

ACT NOW Core Group.

Letter to Stuart Andrew MP from ACT NOW supporter in Pudsey, West Yorkshire.

Dear Stuart Andrew,

My brother, now an adult, has Asperger's Syndrome - he finally got his diagnosis at the age of 30 and it's been a huge relief to him, and myself and our mum, to know exactly why he is different from most other people and that we can at last start to help him understand how to fit in where he wants to, and importantly become more independent through employment.

I'm a supporter of the ACT NOW (Autism Campaigners Together) nationwide campaign. Last October they 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. 

The campaign highlights the huge amount of anxiety and stress that people with an autism spectrum disorder (ASD), and their carers have, when faced with going through assessment by the DWP or other bodies. It's like a test, a one-off chance to express yourself through a minefield of apparent bureaucracy, and I can totally understand this response.  

My brother underwent a Work Capability Assessment 2 years ago, and was refused ESA on the basis that he "seemed like a normal young lad" to the assessor. It's apparent that in its present format the WCA places 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 is often hard for sufferers to understand the nuances of what they are being asked, and they will often give the most basic answer they can think of, whether it applies to them fully or not, in order to relieve the stress and pressure of the situation. 

It is obviously very difficult for someone who has not been specifically trained in autistic spectrum conditions to effectively determine the impact that the disability has on the sufferer during a short assessment process - something that certainly was the case with my brother's assessor. It's a story I hear time and time again, that DWP assessors simply continue to misunderstand and make crude assumptions about autism and ASDs and how they affect sufferers.

It's probably worth noting that most ASD sufferers I know, including my brother, are desperate to find understanding employment and a chance of independence - they are most certainly not benefit scroungers but hard working, diligent, but misunderstood people. All they want is some help to find an employer who is willing to take a chance on someone who is a bit different and take the time to understand them - help  that my brother believes would have been more forthcoming had he been assessed by a properly trained person and been fairly assessed for, and granted, ESA. 

I am therefore writing to support ACT NOW's call for all persons suffering from an ASD to have access to an independent, trained advocate or communication assistant to help them interpret the initial assessment forms and paperwork, and to support them during the WCAs. This should be offered, in a way that the sufferer understands what is being offered and why, and what the consequences may be if they decline, at the first point of contact from the DWP when any application for benefits is made. This should also be offered where there is any review of the assessment or benefit entitlement. Advocate provision should be automatic on the basis of their autism diagnosis, and should be available to support the initial form filling process as well as any WCA or other interviews. 

It is also worth noting that many people with ASDs may not see themselves as needing help, as there is nothing physically wrong with them, and they may not have any insight into why having an advocate is essential, because they have such a narrow interpretation of things that neurotypical people would automatically assume to be obvious.

I am concerned that ASD sufferers are being disadvantaged by being left the the mercy of untrained assessors and a system that puts people with difficulties of interpretation and understanding at a severe disadvantage. Independent advocates should be provided irrespective of the sufferers' ‘apparent’ communication abilities - there is always more going on in the mind of an ASD sufferer than they are able to communicate succinctly.

I would be incredibly grateful if you could take the time to consider the issues facing adults with autism and ASDs, and, add your name to the ACT NOW National Call for independent advocate/communicators for every adult with a diagnosis of Autistic Spectrum Condition (ASC), by contacting them at act.now@btinternet..com. They will also be happy to provide further information on the concerns of autism sufferers and their carers. 

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