What a week!

The last 7 days have probably been the most intense, emotional, exasperating and in some ways euphoric that we have lived through since the ACT NOW Campaign started in July 2010. And it's not over yet...

The issues that ACT NOW and every other disability campaign group have been campaigning about are now coming to a head as the Welfare Reform Bill makes its way towards the finishing line in the House of Lords.

Lord Freud pulled out all the stops and The Broken Of Britain pulled out the Spartacus Report! What a report - it showed the Coalition Government in its true colours. The triple defeat in the Lords may or may not alter the course of the Welfare Reform Bill but we do not imagine the Coalition Government will take this defeat lying down. We already know they are now looking at some ancient laws to try and ensure that ‘their will, will be done’ and we bet the Whips will be out in force over the next 48 hours prior to the next Report Debate on Tuesday.

This last week has left ACT NOW wondering if for the last 18 months we have been fighting a campaign on a cause that does not exist - why on earth would we wonder that you may ask?

When ACT NOW started we were extremely concerned that the cuts to budgets and the changes and reforms to benefits were going to have a catastrophic impact on the lives of thousands of people within the autism community. We rolled out our concerns and we have steadfastly campaigned in the 18 months since.

On Thursday Night, Newsnight gave air space to one of the authors of the Spartacus Report. Sue Marsh, who given the biased Newsnight reporting in favour of the Government, did what she was there to do, against the Minister for the Dept of Work and Pensions Chris Grayling.  

After watching this interview, ACT NOW has been left wondering if we are in fact clueless as to what the real issues are within the Coalition Government’s Welfare Reform Bill.

Are we even right to have concerns about this Bill and why are we campaigning so ardently against it?

Chris Grayling made the following statement on Newsnight: "Let’s be clear about what we’re not doing. We are not taking away benefits from people who have no other income..."

He continued: “We are not taking away benefits from people who are not going to be able to work again. We are making changes for people who’ve got another income, or who’ve got thousands of pounds of savings in the bank...so that’s the principle of what we’re doing.”

Newsnight Presenter Sue Maitlis responded: “Sure and that was presumably understood pretty well by those in the Lords"?

It is not 'understood pretty well' by ACT NOW!

We have written to Chris Grayling many times, he has responded in writing every time and not once did he say to us that only people with 'thousands of pounds of savings in the bank' will lose their benefit or that only those with 'another income' will either.

Why is the Coalition Government not shouting this from the roof tops? Why do people need an assessment if the only way that you are going to lose benefit is if you have an alternative income or thousands of pounds in the bank? Surely looking at bank statements would show the source of an alternative income and would be the way to confirm entitlement?

We want to know what on earth Chris Grayling was talking about and why was such sloppy journalism allowed on an apparently neutral politics programme? We were almost speechless when we realised the paint job that was taking place on Newsnight - speechless but not entirely surprised. We would also like to contest what Mr. Grayling went on to say about the work programme, he stated:

 "We’ve put in place specialist support to help people who’ve got the potential to return to work to do so’..."

This is not what ACT NOW is hearing from adults with autism (or their parents, carers or advocates) who are being placed on this programme - there is no 'specialist support' or at best, it's a postcode lottery.

Just last week a supporter of ACT NOW told us that a work programme provider has admitted to not fully understanding autism. As a result, an adult with autism is having to have a second interview because the adult has not fully understood the process, despite an advocate being present. The advocate will be allowed to attend for the second interview but once again, the adult with autism has to answer all of the questions without assistance. The same work programme provider has suggested the adult would be better off in a programme where staff understand autism better. Where does that leave this young person?

This is not an isolated case. We have had reports from our supporters across the UK telling us work programme providers have very little (if any) knowledge of autism.

The Government statistics rolled out after the DLA consultation did not tell the truth. The Spartacus Report has conclusively proven that and the truth was not discussed on Newsnight.

We were happy that finally the BBC and some other media groups are now talking about the Bill and it's shortcomings but it was at best severely bent and at worst it was yet another lie...

...a lie perpetrated by a Government who will not let a bunch of people, they deem to be not quite disabled enough, stop them from achieving their goals.

Lord Patel put it quite succinctly to Lord Freud:  "If you are going to rob the poor to pay the rich, we have entered a different form of morality."

Here is Sue's blog post, with a reminder for everyone of the Conservative Manifesto Pledges on disability and care in 2010: Diary Of A Benefit Scrounger

Government faced TRIPLE defeat in the Lords!

Despite the victories for the Government on the disabled premium in the new Universal Credit with a cut from families with disabled children saving around £10m+, campaigners expected the (higher costing ESA) amendments to be rejected today. The Lib Dem peers weren't whipped, a decision David Cameron might well be regretting tonight - especially after his poor performance defending Housing Benefit cuts in PMQ earlier this afternoon.

This was the most important debate and vote so far and in an exciting, nail biting triple defeat, the time limit on ESA was extended from 1 to 2 years and there is now an time limit exemption for cancer patients. Some campaigners are disappointed other groups have been excluded but that is something to work on! 

Even more important was the amendment to allow young people to claim ESA automatically, which will affect a significant number of young people who cannot work full time or work at all. 

Lord Freud clearly got himself into a pickle today, was seen to be struggling with his facts and at one point declared he didn't know what to do next!

This could lead to the government being forced to go back to MPs and ask them to reverse this later down the line. We can only hope that the Lib Dems will find that a bitter pill to swallow when their peers upstairs have said no!

A small victory and a great step forward for us and other campaign groups but we can now hope the media will pick up on this story - this bill has been powering through and now finally, in the House of Lords the Government have the first chink in their armour. We have Lord Patel to thank - he said:  "If you are going to rob the poor to pay the rich we have entered a different form of morality."

HEAR HEAR!

2012 - here we go!

ACT NOW (Autism Campaigners Together) supports the Spartacus Report on Responsible Reform as published by The Broken Of Britain today.

Please read, share and tweet this report (#spartacusreport) and then send it to your MP's and Ministers in the Cabinet - you can find out who they are either on the UK Parliament website or go to They Work For You .

The Government's consultation on Welfare Reform did not meet their own code of practice. Disabled people across the UK have been misrepresented by the Government and yet they continue with their immoral and cruel crusade to save money.

Any society is judged by how it treats it's most vulnerable - our Government has to be held to account. People across the UK must listen as the majority will be affected and it's going to hurt.

Will you be Spartacus too?

We are all Spartacus!

Happy New Year!

ACT NOW would like to wish all our supporters a very Happy New Year!

We want to thank all of our 12,000+ supporters for continuing to back our campaign, for contributing by writing to members of parliament and local authorities and for sharing our content on Facebook. Without your support we wouldn't be where we are now. 

We really value all our supporters who regularly contribute by posting onto our regional Facebook groups and to our community page with their own stories but also are often there to support others posting on our pages for whom life is difficult. 

2011 was a tough year for people in the autism community across the UK. There has been widespread worry and fear about ATOS, the change from Incapacity Benefit to ESA and as we move into 2012 more worry about the impact of the changeover to Universal Credit and PIP. This all comes at a time when our money doesn't stretch as far given the recession and many are worried about keeping their jobs.

In March 2011 we launched a campaign video, ACT NOW are Marching On. We couldn't have released this video without the contribution of many of you, once again we thank you for letting us use the photographs you sent us. As we approach the New Year, we want to share this video with you again as ACT NOW (Autism Campaigners Together) is evolving and so we want you to know we are STILL Marching On! 

2012 marks a new beginning for ACT NOW - we will launch our new name (Act Now For Autism), website, logo and a forum will follow. This change will reflect our evolving role on Facebook but also retains part of our current name, which is crucial to continuing our campaign work. 

We remain committed to campaigning for trained autism advocates, better autism awareness for the PIP assessment criteria and assessors, better autism training for professionals associated with ATOS or the DWP and we continue to campaign hard for assessments to have descriptors fitting the often complex and subtle aspects of life and work with autism.

We wish you all a happy and peaceful new year. 

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. (Margaret Mead)

Carole, Teresa, Anna & Mavourneen. (Core Group)

Merry Christmas!

We want to wish all of our supporters a merry, happy, peaceful and calm Christmas and thank you for your continued support for ACT NOW (Autism Campaigners Together) and each other. 

Carole, Teresa, Anna and Mavourneen. (Core Group)

A Roundup Of The Last Fortnight!

Firstly, we ask you to sign Pat Onion's petition (CarerWatch) - we know there are many petitions about just now but we have to keep momentum going: Stop and review the cuts to benefits and services which are falling disproportionately on disabled people, their carers and families.

• The World Health Organisation urged Governments around Europe to act on the measles outbreak :  http://www.telegraph.co.uk/health/healthnews/8932117/WHO-Europe-must-act-on-measles-outbreak.html

• Our girl Anna Kennedy brought out a new DVD recently, which featured in a Sun article after a wonderful success story:  http://www.thesun.co.uk/sol/homepage/woman/health/health/3985693/Dance-taught-autistic-Shannon-to-speak.html

• (you can buy the DVD here: http://www.annakennedyonline.com/step-in-the-right-direction/)

• Scottish ministers were urged to think about new laws to soften the "significant" impact of planned changes to the UK benefits system: http://www.bbc.co.uk/news/uk-scotland-scotland-politics-16074234

• Learning disability units found lacking in wake of Winterbourne View scandal: http://www.guardian.co.uk/society/2011/dec/08/learning-disability-services-lacking-winterbourne-view?fb=native&CMP=FBCNETTXT9038

• The proposed cuts to the disability elements in the new Universal Credit were voted through by a majority of two votes. This will see many thousands of families struggle with the many extra expenses with possibly half the money they currently get: http://www.independent.co.uk/news/uk/home-news/parents-of-disabled-children-furious-at-cuts-to-allowances-6275831.html 

• On the subject of benefits, do you know what the new rates will be as of April 2012? Here's the run-down as published by the DWP last week: http://www.dwp.gov.uk/docs/benefitrates2012.pdf

• We would be really grateful if you would add your name to one more petition, started by Anna Kennedy: Improved support for children and adults with autism who are victims of anti-social behaviour and bullying.

We wish you all a very Merry and Happy Christmas!

Campaign Manager: Carole Rutherford

Administrator: Teresa Catto-Smith

PR: Anna Kennedy

Info Officer: Mavourneen Moore  

NEWS!

Roll up, roll up!

Professor Harringon published the findings of the WCA Year 2 Call for Evidence. (read it here: http://www.dwp.gov.uk/docs/wca-review-2011.pdf) ACT NOW (Autism Campaigners Together) published a response to this report 3 days later - there is a lot of further work to be done and we are very concerned about the DWP continuing to stall the process of changing the descriptors further: http://autismcampaigners.blogspot.com/

Reaction to George Osborne's Autumn Statement has been rather muted and sour - it does appear the rich will get rich and the poor poorer. Here are the key points of his statement:  http://www.bbc.co.uk/news/uk-politics-15937446

More on poverty - the Governments 'anti-poverty plan is failing' was the headline of this Guardian article: http://www.guardian.co.uk/society/2011/dec/01/anti-poverty-plan-rowntree-report?fb=native&CMP=FBCNETTXT9038

10 people were charged with abuse or neglecting patients after the horrific Panorama programme exposed the plight of some people living in Winterbourne View Home (now closed) 3 more people are still on bail pending further investigation: http://www.guardian.co.uk/uk/2011/nov/28/winterbourne-view-care-home-panorama

 The Daily Mail reported earlier in the week that ATOS are planning to ban email communication as staff are spending too much time on emails which aren't relevant. We feel this is another barrier to effective communication for people in the autism community: http://www.dailymail.co.uk/news/article-2067520/One-biggest-IT-companies-world-abolish-emails.html

Keith Robertson from the Scottish Disability Equaltity Forum told MSPs some people are becoming suicidal even at the thought of some of the reforms in the UK Welfare Reform Bill - the Scottish Parliament has been looking at the welfare bill: http://news.bbc.co.uk/democracylive/hi/scotland/newsid_9644000/9644108.stm


In a story which caused great concern just over 2 years ago, a father has taken the MET Police to the high court after seven officers pinned down, handcuffed and restrained then imprisoned his (then) 16-year-old son who is autistic: http://news.bbc.co.uk/democracylive/hi/scotland/newsid_9644000/9644108.stm

And finally:

Channel 4 broadcast a special report called 'Revolving Doors' - it's worth a watch. "The number of appeals for ESA has quadrupled in 2 years, from 68,000 in 2009 to 240,000 by the end of this financial year. The cost to the taxpayer is staggering: £80m so far, and rising": http://www.youtube.com/watch?v=TsR0Oqb2E2g&feature=channel_video_title


Have a great weekend!

ACT NOW response to WCA Year 2 Call for Evidence Review Report

In September, ACT NOW responded to the Work Capability Assessment Year 2 Call for Evidence made by Professor Malcolm Harrington. Summarising our evidence we stated:

"ACT NOW believes that the assessment process in its current form does not reflect the complex needs of adults with autism."

We firmly believe that the descriptors do not reflect the complexities of the autistic spectrum. We also believe that tinkering with the descriptors will never be enough for adults with autism. This is especially so for adults who have Aspergers Syndrome or High Functioning Autism because they neither come under the mental health or learning disability heading.

We accept that adults with autism can have mental health issues and their condition can also fluctuate depending on their current state of health, their environment and any stress apparent in their lives at that time. Adults with autism also have sensory issues and can struggle acquiring knowledge by the use of reasoning, intuition or perception.

Autism does not sit neatly in any one descriptor - we will continue to campaign for autism to have its own descriptor.

On 24th November the Independent Review of the Work Capability Assessment – Year Two  - published its report.

ACT NOW is both astounded and deeply concerned that despite Professor Harrington and his review team being able to endorse recommendations (made by the NAS, MIND and Mencap) to improve the current descriptors and make the Work Capability Assessment a less stressful experience for adults with autism, the DWP have decided "that more work needed to be done to test and validate the evidence underpinning the recommendations".

Professor Harrington in his report is now recommending that "a gold standard review" is carried out, beginning in early 2012. Future decisions about the mental, intellectual and cognitive descriptors should be based on the findings of this review. The review also states that "robust evidence" will be required to implement any further changes - the sub-text being that to date there has not been sufficient evidence to support changes being made NOW.

This is not good enough, the DWP are stalling. As such, vulnerable adults with communication and socialisation impairments are to be measured by a yard stick that was never designed to measure their complex and specific needs. We know that plenty of evidence has been provided by all of the responding groups to the call for evidence.

ACT NOW would also like to highlight how difficult it is for adults with autism to share information about themselves accurately and also to different people, which is what they are expected to do already, often without an advocate. Face-to-face assessments where they have to discuss aspects of their lives will be incredibly stressful and on the basis of this review report, will continue to be.

The WCA (in it's current form) is not fit for purpose and will remain so for at least another 12 months. In fact, one 'conclusion' from the review is: "Inevitably, the whole process has been time consuming but the Review believes that positive changes are in the pipeline. A little patience would be valuable here from the critics, but a recommendation for year three will be to report, in detail, on progress using a series of agreed indices. For example, any reduction in the rate of successful appeals may be one indicator of change for the better although it is not the only one."

Disabled adults (and their families and carers) will therefore have no choice but continue living in fear whilst fighting hard to get benefits just to live day-to-day. Many adults with autism will have been assessed in that time, many incorrectly by a system currently not fit for purpose. The fact that the possible reduction in the rate of successful appeals is a possible measure of "positive change" through the WCA assessment process is appalling - it may actually be an indicator that less people bother to appeal via a system which in itself is not working properly or efficiently.

In the short-term there was agreement with DWP to consider the ESA50 form and whether it is possible to incorporate elements of the recommendations around frequency, severity and duration into this so that initial evidence from claimants allowed more informed decisions. There was also scope to consider changes to specific words or language used in the current descriptors by clarifying their intent or application to help improve the assessment.

To consider changes of course does not mean that any proposed changes to the ESA50 form are to be accepted. This form is proving to be very difficult for adults with autism to fill in without the aid of an advocate. The form itself is creating untold stress and anxiety for adults with autism. The results of this review have changed nothing.

ACT NOW continues to campaign for trained autism advocates to be offered at the first point of contact by the DWP.

"In the longer-term there was agreement of the need to build an evidence base to inform any future changes to the mental, intellectual and cognitive descriptors. This could take the form of a ‘gold standard’ review to establish evidence of the way in which the current descriptors are working and to test robustly the proposed descriptors to see if they would improve the assessment."

How long is "in the longer- term"? Will anything change before the majority of our adults have had to face the assessment? The review states: "An initial and constructive meeting about the ESA50 was held between DWP and the representative groups in October 2011. It was agreed that the representative groups would produce a suggested improved version of the ESA50. No timescales were agreed for this, although the expectation is that this will happen relatively quickly."

Broadly speaking the recommendations recognise that 10 per cent of the population have some form of problem with literacy and the ESA50 being a key part of the ESA claim, the Review agreed that this was something worth exploring in more detail. (Dyslexia is mentioned by name.)

There is no specific mention of autism, which affects all forms of communication.

More worrying is the finding that "There does not seem to be a significant group of claimants who were unjustifiably or inappropriately lost to the system." - we would suggest that many people are in fact lost to the system, they dropped out of it when they became adults and are now not know to even LA's. As such they have no trust in the 'system' so they may in fact not be claiming because they are too scared to.

ACT NOW feels that there is nothing in the review report that will positively affect the experience of the Work Capability Assessment any time soon.

We continue to be concerned about the lack of training about autism - something which does not appear in the review, despite the number of cases of adults with autism across the UK. Current statistics show that over 500,000 people have an ASD in the UK. We are unable to comprehend why an autism-specific descriptor(s) cannot be implemented.

Until there is an autism-specific section/descriptor within the WCA  instead of assessing adults with autism under the mental health and learning disability descriptors, this assessment remains not fit for purpose for claimants with autism.

We also question the effectiveness of any further input from the charities (in particular The National Autistic Society) while the DWP appear to be intent on stalling any kind of change that would directly improve the Work Capability Assessment for adults with autism.

ACT NOW has 12,000 supporters across the UK. That is 12,000 adults, parents and carers all living with autism, who do not hang up their hat at the end of the day, many of whom are living in fear. How many people will it take to make our voice heard - should we have a "little patience" or is it time to stop stalling and start listening?

News!

It's been a quiet few weeks for autism in the news but here's a brief round-up of recent headlines:

Bishops came out to criticise the Welfare Reform Bill - however, they really didn't go far enough as they stopped short of defending people with disability in their criticism: http://www.bbc.co.uk/news/uk-politics-15808922

The NAS issued a statement saying there have been 'new victories' following their campaign for adults with autism claiming of DLA (soon to be PIP) - as with the Bishops, we don't feel NAS have gone far enough: http://www.autism.org.uk/news-and-events/news-from-the-nas/new-victories-for-our-campaign-to-protect-dla.aspx

 Citizens Advice Scotland have called on all political parties to re-affirm their commitment to the principles of the welfare state: http://www.bbc.co.uk/news/uk-politics-15790806

Keith Duffy has quite his high-profile role in Corrie to spent more time at home with his son and daughter, who is autistic: http://www.bbc.co.uk/news/uk-politics-15790806

Anna Kennedy highlighted the scandal of the bullying autistic children face in mainstream schools during anti-bullying week: http://annakonline.com/ako-partners/childline/scandal-of-mainstream-schools-failing-to-tackle-bullying-of-kids-with-autism

Peterborough County Council approved a new school for mainly autistic pupils:  http://www.peterboroughtoday.co.uk/news/education/peterborough_special_school_is_approved_by_government_1_3253332

Sadly Suffolk County Council announced £50m cuts, £15m to come out of the adult social care budget - this is very worrying news: http://www.bbc.co.uk/news/uk-england-suffolk-15743025

And to end on a positive note:

Rafa Benetez opened the new Wirral Centre, which will provide much needed support for adults and their families in the Wirral and across other counties: http://www.wirralglobe.co.uk/news/9362682.Former_Reds_boss_Rafa_opens_new_Wirral_centre_for_autism/


More next week - we hope you've had a good weekend!

Read all about it!

This week saw the broadcast of Panorama's "Britain On The Fiddle", which has caused much controversy. What did you think of it? If you missed it, it's still available on iPlayer:
http://www.bbc.co.uk/iplayer/episode/b016lty2/Panorama_Britain_on_the_Fiddle/

Research in Tokyo discovered low levels of zinc in 2000 autistic children tested. British 'experts' said it is impossible to draw any firm conclusions from the research: 
http://www.dailymail.co.uk/health/article-2057388/Low-levels-zinc-linked-autism-children.html

LBRB blog reported on a study in Sweden about the prevalence of autism in toddlers: 
http://networkedblogs.com/pxwgM?a=share&ref=nf

Surrey County Council have finally acted to help a desperate mother with her autistic son, who hasn't been in school after being expelled when his challenging behaviour got too much for teachers. He has a placement in a residential school and is currently being assessed: http://www.thisislocallondon.co.uk/news/9340321.Mother_s_plea_for_help_with_autistic_son_answered/

The Scottish Government finally launched the Autism Strategy for Scotland. There's a long way to go and there is much of it open to interpretation. They also announced £13.5 million to back up the strategy - we hope that goes into front-line services - too optimistic? Strategy at a glance: http://www.scotland.gov.uk/Resource/Doc/361939/0122374.pdf

DYSPRAXIA AWARENESS WEEK - 5th to 11th November. To find out more about events and the condition itself, please visit the Dyspraxia Foundation website: 
http://www.dyspraxiafoundation.org.uk/services/dys_glance.php

And finally some exciting news from ACT NOW!

We have decided our name no longer reflects who we are and how we are now evolving. So, we have decided we will change our name to Act Now For Autism - look out for our new name, logo's, website AND we'll be starting a forum in the New Year!