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!

NEWS ROUNDUP!

In the news this week: 

•  John Humphrys has infuriated disability groups by making a programme based on the theory that our welfare system is doomed to fail given our ‘welfare dependency’. Here is a blog post with counter argument/evidence: http://www.leftfootforward.org/2011/10/john-humphrys-is-wrong-on-social-security/

•  Members of the House of Lords continue to read the Welfare Reform Bill, which is at Committee stage. Keep up to date with the amendments being discussed by reading the Lords Hansard text: http://www.publications.parliament.uk/pa/ld201011/ldhansrd/text/111026-gc0001.htm#11102656000134

• Two severely disabled people have gone to court to fight multi-million pound cuts to council care services. They are challenging a move by Manchester town hall to slash £39m from the adult care budget: http://menmedia.co.uk/manchestereveningnews/news/s/1462836_disabled-pair-take-manchester-council-to-court-over-39m-adult-care-cuts

• Rather worrying was the news that education budgets in England will be cut by around 50%:  http://www.telegraph.co.uk/education/educationnews/8847214/Record-spending-cuts-hit-nursery-schools.html

• In the midst of concerns about budgets, North Yorkshire and York Primary Trust have apologised for delays in diagnosing autism in children. An audit revealed 41 children across Scarborough, Ryedale and Whitby have faced an excessive wait for diagnosis:  http://www.bbc.co.uk/news/uk-england-york-north-yorkshire-15382209

• The Hardest Hit rallys took place all over the UK on 22nd Oct - go to their website for more information about how you can get involved in their campaign: http://thehardesthit.wordpress.com/

• In Virginia USA, a 9-year-old boy with autism was found alive after wandering off 6 days ago:  http://www.dailymail.co.uk/news/article-2054876/Alive-Mute-autistic-boy-9-woods-days-wandered-family-hike.html?ito=feeds-newsxml

• Hugh Muir examines proposed cuts to disability benefits. Is this a sensible plan to get the finances under control, or an attack on the most vulnerable?(Podcast): http://www.guardian.co.uk/world/audio/2011/oct/21/focus-podcast-disability-benefits-cuts

• Childline have a new section about autism and getting help if you've got autism and are being bullied: http://www.childline.org.uk/Explore/Life/Pages/Autism.aspx

• Anna Kennedy's new DVD Step In The Right Direction was featured on Tyne Tees news along with  James Hobley: 

http://www.itv.com/tynetees/autistic-dancers-talent90272/

Have a great weekend!

URGENT Call for Action!

'Never fall ill, never grow old, never become disabled'   

for if you do, not even Labour will speak up for you.'

To all our supporters:

The Labour party conference starts in Liverpool on Saturday. Labour were the architects of Employment Support Allowance and the ‘not fit for purpose’ Work Capability Assessment which is so stressful and traumatic it was linked to the suicide of claimants whilst Labour were still in power. They are the party of opposition but they are not opposing the Welfare Reform Bill as they should be. Labour seem to have forgotten that the 10 million sick and disabled people plus carers, friends and family in the UK have significant voting power. 

It is time for us to remind Labour that they will not get our votes if they do not start to oppose the parts of the Welfare Reform Bill set to return sick people, disabled people and carers to a life of desperation, dependency, despair and charity.

We are asking you to help with a mass email to key members of the Labour party to remind them of our voting power. Please include the following details in your email and send it to Ed Miliband, Margaret Curran (shadow minister for disability) and Liam Byrne (shadow minister for DWP). If you have time please also email it to any Labour MP and particularly any members of the shadow cabinet. We have provided a list of email addresses below.

Please aim to send your email at 11am tomorrow (Thursday the 22^nd September) If you can’t send the email at 11am, don’t worry, just please try to send it at any time between then and the end of Labour party conference on Wednesday 29^th September.

The email subject  should read: Your Silence Is Deafening

We suggest embedding a link to this youtube video “The Sound of Silence” To embed the video into your email just copy and paste the link below.

http://www.youtube.com/watch?v=BvsX03LOMhI

Then please copy the following text into your email:

Dear (insert name here)

10 million disabled people in this country plus their carers, relatives and friends are watching what your party do in relation to disability issues and wondering why you seem disinterested in trying to get our votes by opposing the savage attacks against disabled people being made by the Coalition Government. During conference season we wish to remind you, the architects of Employment Support Allowance, to 'never fall ill, never grow old, never become disabled', for if you do not even Labour will speak up for you.

I support the ACT NOW (Autism Campaigners Together) campaign for autism advocates to be offered at the first point of contact by the DWP and also for compulsory autism training for ATOS healthcare professionals. Adults with autism are at a disadvantage right from the beginning of the assessment processes, which Labour introduced.

(If you would like to add a short, personal message explaining to Labour how you feel about their lack of support for sick, disabled people and carers then please include it after the suggested text. You might also like to include a photo of yourself, or perhaps a photo of what disability, sickness or caring means to you. Don’t worry if you don’t want to personalise the email, sending the suggested text is fine) 

Regards

(Insert your name)

Please send your email to:

Ed Miliband MP, Leader of the Labour Party

House of Commons, London, SW1A 0AA
Tel: 020 7219 4778
ed.miliband.mp@parliament.uk

Shadow Secretary of State for Work & Pensions

Liam Byrne

House of Commons, London, SW1A 0AA
Tel: 020 7219 6953
Fax: 020 7219 1431
byrnel@parliament.uk

House of Commons, London, SW1A 0AA
Tel: 020 7219 8102
Fax: 020 7219 6656
margaret.curran.mp@parliament.uk

Shadow Home Secretary and Minister for Women and Equalities

Rt Hon Yvette Cooper MP

coopery@parliament.uk

Shadow Chief Secretary

Angela Eagle

eaglea@parliament.uk

Shadow Secretary of State for Business, Innovation & Skills

John Denham

denhamj@parliament.uk

Cabinet Office and Minister for the Olympics

Tessa Jowell

jowellt@parliament.uk

Shadow Secretary of State for Communities and Local Government

Caroline Flint

House of Commons, London, SW1A 0AA
Tel: 020 7219 4407
Fax: 020 7219 1277
caroline.flint.mp@parliament.uk

Shadow Secretary of State for Culture, Media & Sport

Ivan Lewis

House of Commons, London, SW1A 0AA
Tel: 020 7219 2609
lewisi@parliament.uk

Shadow Leader of the House of Commons 

Hilary Benn

House of Commons, London, SW1A 0AA
Tel: 020 7219 5770
hilary.benn.mp@parliament.uk

Shadow Secretary of State for Defence

Jim Murphy

House of Commons, London, SW1A 0AA
Tel: 020 7219 4615
Fax: 020 7219 5657
jimmurphymp@parliament.uk

Shadow Secretary of State for Environment, Food and Rural Affairs

Mary Creagh

House of Commons, London, SW1A 0AA
Tel: 020 7219 6984/020 7219 8766
Fax: 020 7219 4257
creaghm@parliament.uk

Shadow Secretary of State for Education and Election Coordinator

Andy Burnham

House of Commons, London, SW1A 0AA
Tel: 020 7219 8250
andy.burnham.mp@parliament.uk

Shadow Lord Chancellor, Secretary of State for Justice

Sadiq Khan

House of Commons, London, SW1A 0AA
Tel: 020 7219 6967
Fax: 020 7219 6477
sadiqkhanmp@parliament.uk

Shadow Secretary of State for Energy and Climate Change

Meg Hillier

House of Commons, London, SW1A 0AA
Tel: 020 7219 5325
Fax: 020 7219 8768
meghilliermp@parliament.uk

Shadow Secretary of State for Health

John Healey

House of Commons, London, SW1A 0AA
Tel: 020 7219 6359
Fax: 020 7219 2451
healeyj@parliament.uk

Shadow Secretary of State for Northern Ireland

Shaun Woodward

House of Commons, London, SW1A 0AA
Tel: 020 7219 2680
woodwardsh@parliament.uk

Shadow Secretary of State for Scotland

Ann McKechin

House of Commons, London, SW1A 0AA
Tel: 020 7219 8239
Fax: 020 7219 1770
ann.mckechin.mp@parliament.uk

Constituency

Shadow Secretary of State for Transport

Maria Eagle

House of Commons, London, SW1A 0AA
Tel: 020 7219 4019
Fax: 020 7219 1157
eaglem@parliament.uk

Shadow Secretary of State for Wales

Peter Hain

House of Commons, London, SW1A 0AA
Tel: 020 7219 3925
Fax: 020 7219 3816
hainp@parliament.uk

Steven Timms MP

timmss@parliament.uk
stephen@stephentimms.org.uk

Karen Buck MP

buckk@parliament.uk