Please help us to record the cuts!

Check out our new page here for the UK geographical 'record the cuts' groups on Facebook!

We need to do this to assess the impact cuts will have on our supporters.  We require hard evidence that individuals’ health and well-being is being damaged by the actions of central government and councils.

You can assist in three ways: 

1. By informing us of cuts in your area. Find and join your area Facebook group or email your Co-ordinator direct.
2. By telling us your story – how the cuts are going to affect you.
3. By becoming an Area Co-ordinator helping to gather evidence of the cuts

ACT NOW is positively buzzing!   By campaigning together we will achieve change for the better.

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)

ACT NOW Letter via email to Jon Cruddas MP (Labour Party)

Dear Mr. Cruddas

I am writing to you after reading an article published in the Guardian ‘Up to 500,000 wrongly denied incapacity benefit figures show’ on Monday 3^rd January 2011.

I am the Campaign Manager of the ACT (Autism Campaigners Together) NOW Campaign. I am also the Mother of two autistic sons. ACT NOW currently has 7,500 supporters. Our campaign only began in July 2010.  All of our supporters are living with autism.

The ACT NOW campaign was born out of a sense of total despair within the autism community that the proposed cuts to budgets coupled with the benefit assessments that adults with autism are required to have would have a catastrophic affect on our lives.

Within 4 months we had 6,000 supporters and we had compiled an ‘ACT NOW Impact Assessment Report’ (report attached) which was based on 2,943 pieces of evidence received from parents, carers and adults with autism, and which we published in October.  Our 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.

Our concerns regarding the reassessment of benefits being received by adults with autism are also growing daily. We are aware that in one area alone 11 adults with autism have been declared fit for work after being assessed by ATOS professionals. We are hearing of other areas where this is happening almost on a daily basis now.

Autism is a triad of impairment, two of which are communication and socialisation. Before a diagnosis of autism is made the person with the condition must be assessed as having a significant impairment in both communication and socialisation and yet there are no adjustments being made by providing advocate/communicators for the adults within our community. ACT NOW totally supports your call for a pause in this particular aspect of the government's crackdown. Communicating with the Department for Works and Pensions is proving to be difficult.

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 would like to ask you to consider becoming a supporter for our campaign and if you would be willing to meet with us to perhaps look at the evidence that we are collecting wrapped around our campaign. We are looking for someone to give us a voice.

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 by a large 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 that you will share our concerns and consider working with us to ensure a better life for those our organisation has been formed to support.

Yours sincerely

 

Carole Rutherford

Campaign Manager

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

ACT NOW Supporters Club!

ACT NOW needs more supporters

We need to become a force to be reckoned with and to do that we need to be able to speak ‘with one voice’ for as many people as possible. Although we did very well with our petition and are able to say that we have just over 6000 named supporters, we need to times that number by around ten if we can. 

We need named supporters. Named supporters can be parents, carers, grandparents, siblings (over 18’s only) aunts, uncles in fact anyone who is a family or extended family member, who can say that they are supporting ACT NOW because they have a relative with autism. 

We are fully aware that not everyone in our families are able, or even want to, access the internet. So we would like our named supporter to ask their family members if they are willing to support the ACT NOW Campaign. If your family members are happy to support us then we need you to add their names to our supporter’s club list. It is important that those who have their names added understand that by adding their name to our supporter’s club this means they are actively supporting the ACT NOW campaign.  

All we require from our supporters is their full name, town of residence, postcode and email address (if any) - there is no need to give a full address. Click here to join us online! or email us act.now@btinternet.com

Please Note:  ACT NOW Autism Campaigners Together are registered with the Data Protection Act Registration No.  1124511 and will not disclose any information to any third party.

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