Are you an Autism group or organisation?

Let's support each other

ACT NOW are pleased to announce two new additions to our growing list of named Supporters.  

We welcome Indigo Kids - a support group for parents/carers of children on the autism spectrum in Nottinghamshire and the Learning Disability Coalition where organisations work together to ensure there is enough public funding for people with a learning disability to have the same choices as everyone else.

If you are a parent/carer support group or autism organisation in the UK and would like to support our work and share reciprocal website links with us, please get in touch.  Also, if you belong to any autism groups in your area please let them know about our campaign - we need to continue to reach as many people as possible! We look forward to hearing from you.

Best wishes
Admin

Benefit Assessment Advocates/Communicators for EVERY adult with ASC

We MUST start fighting for advocates/communicators for every adult with an ASC who has to have a benefit assessment. We MUST do this because we MUST remember that this Government has not ruled out children having to have these assements too. We have yet to receive a response to our letter of 13th December from Chris Grayling MP seeking clarification on what is included in the autism training modules that have been developed by ATOS and the DWP.

In the News. Benefits advice to be slashed – with little resistance - 23 November 2010

The coalition’s plans to end legal aid for many areas of law, including welfare benefits, have so far met with a muted response. This is in spite of the havoc it is likely to cause to both claimants and the advice sector, where many agencies may shrink drastically or close down altogether.

The Proposal for the Reform of Legal aid in England and Wales green paper was published on 15 November. In it, the coalition sets out its plans to slash legal aid for the poorest in society. Amongst the plans is the removal of legal aid for:

•debt,
•education,
•employment,
•housing,
•immigration,
•welfare benefits.

Anyone with capital of £1,000 or more will have to pay a minimum of £100 towards their legal aid fees, and higher contributions will be expected from those who currently contribute to their legal fees.

The cuts, if they are introduced, may see the few solicitors firms still offering affordable benefits advice pulling out. Independent advice agencies and law centres may also be particularly vulnerable.

Many Citizens Advice Bureaux (CAB) also rely heavily on legal aid to fund advice staff as well as admin workers and management. This is particularly the case in relation to welfare benefits, debt and housing. The political repercussions of hundreds of CABs closing would be severe and would also lead to rapidly increasing caseloads for MPs constituency offices, which increasingly get involved in benefits issues.

As a result the coalition has already hinted that a new way of funding Citizen’s Advice Bureaux will be found.

However, if the funding arrangement involves millions of pounds being given to the national Citizens Advice body to distribute to individual CABs, this could dramatically alter the nature of what have always been fiercely independent local charities. Funding is also likely to come with strings attached which may reduce the ability of bureaux to support benefits claimants in relation to appeals, for example.

The proposed legal aid cuts have met virtually no opposition from the labour party, which has admitted it planned to slash legal aid too. Nor has there been, as yet, any organised response from the advice sector. A campaign to ensure that everyone is treated fairly under the law, Justice for All, has recently been formed and a website set up by a coalition of agencies including:

•Law Centres Federation
•Advice UK
•Citizens Advice
•Unite
•Legal Action Group

Visitors are urged to join Justice for All and have their name displayed on the website. Unfortunately, no information is given about what practical campaigning activities Justice for All is actually undertaking.

Happy New Year!

Wherever you will be on New Year's Eve here's wishing you all a very happy one!
No doubt 2011 will bring many new challenges ahead regarding the cuts so its more important than ever to shout loud and stand strong together.  We are continually being told of new stories in the media and from our supporters how cuts will affect their lives.  ACT NOW vows to carry on recording the cuts across the UK for families with autism and adults with ASC.  

One of our supporters who has a daughter with autism has continued to fight for her child and writes some excellent, straightforward letters to the government capturing the very essence of autism and how very complex and hidden the condition is.  Let us continue to hope that the coalition will take notice and consult with us, as after all, we are the voice for thousands of parents/carers and adults with autism across the country - TOGETHER WE CAN MAKE A DIFFERENCE!!

From a supporter:-

Dear Lord Freud and Iain Duncan Smith MP / correspondence team,

Thank you for the response. (Our Ref: TO/10/39858)

Why do you keep talking about "severe disability" - what does this mean?

Where does autism (including Asperger Syndrome) fit into this?
I and many others in the autism / autism carers community smell a big rat.

"The Government recognises the difficulties faced by severely disabled people and their carers. Ministers have made it clear that they want to ensure benefits are fair and affordable, and support the participation of disabled people in society."
What does "support the participation of disabled people in society" mean? I smell another big rat wrapped up in a fluffy seemingly PC euphemism. Will they be forced into work with no regard to communication difficulties, sensory issues, fears phobias, anxiety etc etc. or to their resulting mental ill-health?

"New arrangements are also being introduced to ensure that people of working age who currently receive incapacity benefits have access to advice and support to help them consider a move into work, if they are able to do so."
Should not these new arrangements have been made and talks begun with concerned parties BEFORE benefits were cut, as they already have been?

Again - is the NAS being included in any decisions? Who exactly from the disability world are you actually talking to?

Your response does not address any of the issues I raised in my email. People with autism and their carers have ALREADY been subjected to ill-informed and ill-considered government policy over the years, which has affected them adversely. They already have enough problems, they do not need any more. They are already anxious, they do not need to have their lives undermined yet again by a government that hasn't done it's homework re autism - and doesn't actually seem to care.

Your evasive response seems to indicate that people with autism do not matter to you, that it is OK to kick people when they are down through no fault of their own, and that it is OK to take important far reaching decisions on impulse, and without even basic intellectual rigour or any morality. It reflects a morally spineless and bankrupt, unprincipled, arrogant, undemocratic, I'm-all-right-Jack way of thinking.

It's nothing to be proud of to be a bully. You are FRIGHTENING and UNDERMINING vulnerable people. For SHAME.
"The Government published a consultation paper on 6 December and the consultation document can be seen on the DWP website, which also contains details of how to submit views."
Really? I have lost count of the "consultations" that I have taken part in, over the years. When it's over, one does not hear another word. They are usually not "consultations", but presentations in thin disguise. It's all in the clever language, smoke and mirrors. It's never honest and real. This one, I guarantee, will be the same. The government will carry out what it had already intended to do, regardless. This is absolute certainty.

Also, what agency will replace the Connexions Intensive Teams? Who will take over their role in helping young people with disabilities who are in utter crisis, because they have received NO other support?

I think that you will lose a HUGE amount of votes over this ruthless shameful attack on the fragile and vulnerable in society, and rightly so.

Yours sincerely

Let it snow!

Dear Supporters

We are now well and truly on our way to Christmas and are all looking forward to a well earned rest! I hope that the snowfall is not too heavy where you are. The beauty of the snow is always a sight to behold, even though it can bring Britain to a complete standstill like this couple here......

Letter sent to Eric Pickles MP, Chair of Conservative Party from one of our Supporters

One of our supporters has kindly given her permission to post her letter she has sent to Eric Pickles MP.

Dear Eric,

I remember that when I came to see you with my daughter on another matter, some months ago, you indicated clearly to us both that you well understood the difficult lives that those with Asperger Syndrome and their parents/carers live, and the lack of understanding and support that they receive from most quarters and indeed the obstacles that they (continue to) face.

As you must realize, most people with autistic spectrum conditions, because of their anxiety, fears phobias, OCD, social and sensory and many various other difficulties, live their lives AVOIDING life, in great part, because the stress would be too great to bear. Autism is not a mental illness in itself, but when those with autism are subject to the stresses of life and face a general lack of understanding and support, their mental stability is rapidly undermined. They can also rarely manage completely alone. Families have to watch over them to whatever extent necessary to support their safety and mental survival in a tough oblivious world. Their success in life is a fragile tenuous easily broken thing. They are fragile personalities. Their independence needs continuing support, a watchful eye, and care. Most of the world does not realize that there are other types of mind and perception. Misunderstandings on both sides are many.

This coalition government seems to have absolutely no idea about the situation of those with autism and their families, or they would not have done what they have done, if they had any conscience. They appear to have actively targeted those with autistic spectrum conditions for benefit cuts. I know of 11 people in Essex so far, with Aspergers, who have had certain benefits taken away, and who will have to face the ordeal of an appeal. Imagine being faced with a crucial interview and feeling axious and times that by about 20. Add to this the fact that the outcome witll affect your life and survival.

Also, DLA is being looked at by the Coalition – but it has not invited the National Autistic Society to have any input. As far as I am aware it is still true that the interests of those with autism are not represented at all with this discussion. Why is this? This is truly alarming for those of us who care about the human rights, mental health and indeed survival of those with autism. Apart from the fact that we love our kids with autism fiercely. Autism is a separate strand of disability that needs consideration in its own right.

We all know there have to be cuts, but why take crucial support, from vulnerable individuals, with such indecent haste and with no research AT ALL as to the effects on the victims? Cannot the cuts be spread more generally amongst members of society at all levels?

Please do not forget that most people with ASCs have been forced to attend mainstream schools under the banner of “Inclusion” ( an imposed and misguided – in my opinion - government policy) where because of sensory overload, lack of social skills, problems with understanding language except in the most literal sense, etc etc, they often could not cope, became highly stressed, even suicidal, so received a patchy, incomplete or severely compromised education – as with my own daughter, who spent months out of mainstream school. How are they then to survive in the job market, when so ill-prepared, plus another result is that they can become phobic about being in such situations?

The authors of these severe coalition cuts haven’t referred to recent history, nor to any studies of autism. There seems to be no rationale at all, no reflection or consideration.

They have not provided any alternatives or training.

As you know, even when someone with Aspergers does try very hard to be independent, despite past harships and rejections etc, and get themselves on to an into-work training scheme, (NAS Prospects, which I hear may be running down in any case??) it is still a long-drawn out process to get a referral from the Work Psychologist via the Job Centre etc.

Please could you use your knowledge and experience in the area of autism to influence your colleagues in government, so that they wield their uninformed and cruel axe away from the utterly defenseless, blameless and vulnerable?

Thank you,
Yours sincerely

Petition the Minister for Disabled People to Recall the Public Consultation on DLA Reform

Petition the Minister for Disabled People to Recall the Public Consultation on DLA Reform

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.

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.

National Autistic Society response to our questions on the Disability Allowance Reform documents

To the Policy Officer NAS from ACT NOW

We have been reading the Disability Allowance Reform documents and note that it is stated that DWP are developing the new benefit 'in collaboration with a group of independent specialists in health, social care and disability, including disabled people'.  We are assuming/hoping that the NAS are included within the group of specialist/groups that are being consulted with. Do you have any idea at all if there are any adults with autism included within this group?

We are also keen to find out more about their view of the 'objective assessment of individual need' and what that really means. Any idea? 

NAS Response

Thanks for your email. No we are not on the group, and as far as I am aware nor are many of the other disability charities e.g. Scope and RNIB are not on it. I understand that RADAR and Equality 2025 are on it though.

We are asking for a list of members and seeking a meeting with Department for Work and Pensions (DWP). We are very concerned and the key ways we'll be working on this is via lobbying on the upcoming bill and responding to the consultation, we're developing further campaign / lobbying plans at the moment. 

The NAS, as our supporter, are keeping us informed and updated on this matter.  We hope to give you further information as soon as possible.

Disability Living Allowance Reform and Autism - our response

Today we have sent a letter to Maria Miller, Minister for Disabled People on the Department for Work and Pensions (DWP) proposals for a new benefit Personal Independent Payments (PIP).  You can read the public consultation here

A copy of our letter has been sent to Ian Duncan Smith and Paul Burstow MP.  We welcome your comments, thank you.

Dear Mrs. Miller

The news regarding the Disability Living Allowance reform and the proposal to replace Disability Living Allowance with a new benefit, Personal Independent Payments, has generated and continues to generate a great and increasing deal of concern within the autism community. To date we have already been contacted by many concerned parents and adults with autism who are extremely worried about the face-to-face meeting with an independent healthcare professional who may have little understanding of the impact, nature and complexities of autism, allowing an in-depth analysis of an individual’s circumstances to be carried out.

ACT NOW (Autism Campaigners Together) would like to know who the DWP are working in collaboration with while they develop an objective assessment of individual need for people with disabilities. We would like to know which independent specialists in health, social care and disability are contributing to this process, who the specialists are, their qualifications experience/expertise and how many adults with autism are taking part. 

As you will be aware ACT NOW has already raised concerns in our letter dated 5^th November and the same letter to you via email on 30^th November regarding the benefit assessments and works capability assessments that adults with autism are already being subjected to in some areas. In our letter, which we are still awaiting a reply to, we also asked for an assurance that the Employment Support Allowance, Disability Living Allowance and Incapacity Benefit assessments are tailored to meet the needs of adults with autism. We would like to reiterate this and ask for further reassurance regarding any assessments that evolve from the Disability Allowance Reform.

We realise that there is now a consultation process underway and that concerned parties will be able to take part in the consultation.  Given the number of questions and the time frame available this is also going to cause further unnecessary stress and anxiety on a group of people who are marginalised, vulnerable and discriminated against.  We also have concerns regarding the consultation and how it has been presented. Although there is an easy read version of the consultation we do not feel that the easy read version is autism friendly.  Adults with autism often have huge problems in being able to fill in forms and that also applies to consultations.  We are concerned that some adults will be put off from responding to the consultation because they would require help to be able to do so.

We believe that it is important that members of the autism community are reassured that adults with autism and their families are fairly and accurately represented within the core consultation group.  Autism is a vast spectrum.  It is a spectrum of people as well as disorders with no two people with autism the same, therefore it is important that adults with autism are properly represented.  The ACT NOW Campaign has some 6,000 supporters to date and this number is rising daily, including adults with autism.  We would like to request an opportunity to meet with you and your colleagues so that we can discuss this very important and potentially life changing issue with you.

This is a time of great change and reform for the autism community and change can create a great deal of stress and anxiety for people with autism this includes what many may describe as subtle, minor or trivial.    This is why we are asking for a reassurance from you as the Minister responsible and on behalf of the Government, now that adults with autism will have all of their unique, complex, hidden and specific needs and any possible diagnosed or future diagnosed co-morbid needs taken fully into consideration and that those needs will be reflected in whatever this reform brings forth.

There are also concerns being raised within the autism community that the views and concerns of those organisations and individuals who are working in collaboration with the DWP and those that are fed back to the DWP through the consultation will not be acted on. These concerns result from the recommendations that were made by the External Reference Group (ERG) to the Department of Health while they were working on the Adult Autism Strategy as well as the issues that led and remain within the Autism Act 2009.  Despite the recommendation of the ERG, which included many of our top autism professionals as well as parents and individuals with autism, both through the ERG and research that was carried out by Opinion Leader, the strategy reflected very little in the way of recommendations made by that group as did the results of the consultation that preceded the writing of the Autism Strategy.

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

Yours sincerely

Carole Rutherford

Campaign Manager/Founder