ACT NOW is ONE!

We are celebrating our first birthday in July! We are so pleased to have amassed 10,000+ supporters in that time, gathered many MP supporters and spent time at the Houses of Parliament representing the voice of the autism community across the UK. Our work goes on and we are will continue to march on, campaigning on your behalf alongside you.

To celebrate the end of our first year and to celebrate YOU we are launching our You Tube channel and are looking to you our supporters for video contributions. Do you want people out there to know something about your life, how cuts have affected you, your experience at the hands of ATOS or JCP? Are you a carer struggling with little or no respite? Do you have a positive story about living with autism you want to share? Please contact Teresa for more information.

We would also love it if you would write a guest blog post (this can remain anonymous if you prefer) about any of the same topics. We aren't looking for a masterpiece of writing, something written from the heart is all it takes. (We will of course accept a masterpiece of writing too!) Send any contributions to Teresa or contact her for further information.
 

This month it's over to you - what do you want people 

out there to know about your life?

  

Come on! ACT NOW and help us celebrate the end of 

a busy, productive year and the start of the next one! 

WE'RE MARCHING ON! 

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)

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.

Will the evidence come too late for those of us living with autism and disability?

The Treasury published an ‘Overview of the impact of Spending Review 2010 on equalities’ on October 20th the same day that the second round of cuts were announced and disability even comes last on this list.  I am not sure that I am happy with the way some of this overview is worded. Then again maybe I am just being overly sensitive. I have made some observations on the review and my thoughts.

The 2010 Spending Review

http://cdn.hm-treasury.gov.uk/sr2010_equalities.pdf

1.4  The Spending Review makes choices. Particular focus has been given to reducing welfare costs and wasteful spending.  This has enabled the Coalition Government to prioritise the NHS, schools, early years provision and the capital investments that support long-term economic growth, setting the country on a new path towards long-term prosperity and fairness.’  

Ouch! Whilst this does not directly state that welfare costs actually constitute ‘wasteful spending’ could the implication here be that welfare costs ARE ‘wasteful spending’?  People with disabilities have not asked to be disabled and is it entirely fair to punish them because they are disabled?

1.8  For tax and welfare measures, a screening exercise was undertaken to assess whether the change would have a particular impact on women or men, people of different ethnic origin or people with disabilities. The results of these screening exercises, and the ways in which these could be mitigated, were considered when policy decisions were taken. Full impact assessments will be considered and published by the relevant departments in due course, as the full details of these policies are worked out.

Approach
1.11  Spending which directly promotes equality of opportunity, such as that on education, is more significant for future life chances than spending which funds other services, even if these are consumed unevenly across the population.

The education of children with autism and special educational needs leaves a great deal to be desired. It has been declared ‘not fit for purpose’ on more than one occasion by the Government’s Educational and Skills Select Committee and Sir Al Aynsely Green, who was at the time the Children’s Commissioner for England. Brian Lamb’s review only last year commented on the lack of attainment by children with SEN which would suggest that life chances for that group of children are not great.

People with Disabilities
2.15 People with disabilities use some public services more than people without a disability, in particular:

• Health: People with long-term health conditions account for around 70 per cent of the NHS budget. Many within this group will also have a disability
• Social care: people with disabilities are more likely to be users of social care
• Service targeted on people on low incomes: people with disabilities are more likely than average to be in households on low incomes; and
• The Disabled Facilities Grant.

2.16 Decisions have been taken within the Spending Review which relatively protect these services. Health spending has been protected in real terms. In social care, the Spending Review has provided additional funding needed to maintain current levels of care, which when combined with efficiency savings, will allow local authorities to ensure that better outcomes are delivered and that greater value for money is achieved. Decisions on funding for social care are, however, ultimately a matter for local government. The Disabled Facilities Grant has been prioritised within the capital allocation process.

There are often no healthcare services available for adults with autism and therapies and interventions are already a postcode lottery for children with autism.  So what will be protected for us in 'real terms'?

While maintaining the current levels of care (which will remain to be seen) in social care is good news for those who have been able to access social care, what does that mean for anyone who has not been able to access it? Leaving it to local government does not inspire me to think that everything will be just fine.

2.17 Measures targeted on people on low incomes, in particular the extension of childcare to disadvantaged two year olds and the Pupil Premium will benefit young people with disabilities, who are over-represented in the target groups for these policies. The confirmed increase in funding for short breaks for disabled children will also help to improve the quality of life for children and young people with disabilities and their families.

2.18  In order to protect these areas, savings have needed to be made in other areas of Government spending. Some people with a disability will be affected by the time limit for contributory Employment and Support Allowance (ESA). However, this will be mitigated for the most severely disabled and those on low incomes as the Support Group in ESA and Income Related ESA will not be subject to the time limit.

(Mitigate - to make something less harsh or severe).  Who will decide who are the most severely disabled? If someone who needs 24/7 round the clock care after being paralyzed by a car accident is assessed as being fit for work, then it is difficult to imagine what severely disabled will be decided as.

Equality and Human Rights Commission 

http://www.equalityhumanrights.com/uploaded_files/eiaguidance.pdf

Section 2 What is an Equality Impact Assessment?
Carrying out an EIA involves systematically assessing the likely (or actual) effects of policies on people in respect of disability, gender and racial equality, and, where authorities choose, wider equality areas.This includes looking for opportunities to promote equality that have previously been missed or could be better used, as well as negative or adverse impacts that can be removed or mitigated, where possible. If any negative or adverse impacts amount to unlawful discrimination, they must be removed.

An EIA has four possible outcomes (examples can be found in Section 4). More than one may apply to a single policy:

Outcome 1: No major change: the EIA demonstrates the policy is robust and there is no potential for discrimination or adverse impact. All opportunities to promote equality have been taken.

Outcome 2: Adjust the policy: the EIA identifies potential problems or missed opportunities. Adjust the policy to remove barriers or better promote equality.

Outcome 3: Continue the policy: the EIA identifies the potential for adverse impact or missed opportunities to promote equality. Clearly set out the justifications for continuing with it. The justification should be included in the EIA and must be in line with the duty to have due regard. For the most important relevant policies, compelling reasons will be needed.

Outcome 4: Stop and remove the policy: the policy shows actual or potential unlawful discrimination. It must be stopped and removed or changed (the codes of practice and guidance on each of the public sector duties on the Commission’s website provide information about what constitutes unlawful discrimination).

Why impact assess?
The simple answer is that for many it is a legal requirement. But more importantly, it is an effective way of improving policy development and service delivery, making sure that organisations consider the needs of their communities, identify potential steps to promote equality and don’t discriminate. It enables evidence-based policymaking, which is at the core of modern public policy, and can allow efficiency savings through more effective services.

Evidence-based policymaking 

Modern public services should be shaped by evidence-based policymaking. This means using evidence to design policy that we know, or at least have strong objective reasons to believe, will work. Without evidence, it can be impossible to tell if good intentions will turn into good outcomes. EIAs provide a clear and structured way to collect, assess and put forward such evidence.

 ‘should’ be shaped by evidence based policymaking?

The evidence that the cuts to budgets that will impact on our services, provisions and support and the benefit assessments and their outcome for adults with autism will only become obvious during the coming months and years.  For many families and adults living with autism the evidence will come too late to stop them from reaching crisis point.  

ACT NOW will continue to campaign for the Government to find the evidence before many more families and adults with autism find life any harder than they already do.

Written by Carole Rutherford, Campaign Manager

Phase Two of ACT NOW

The ACT NOW Campaign is set to continue. We are currently working on an Action Plan and the aims and objectives of the campaign. Our primary concerns continue to be the concerns that underpinned phase one of the ACT NOW campaign.

We are committed to fighting to ensure that both the Employment Support Allowance (ESA) and Disability Living Allowance (DLA) benefit assessments are tailored to meet the needs of adults with autism. That it is recognised by the Department for Work & Pensions (DWP) that adults with autism have impairments with both communication and socialisation and that those impairments will impact on both their verbal and non verbal communication. This includes filling in assessment questionnaires.

We want an assurance that adults with autism will not only be able to access an advocate to assist them in filling in benefit assessment questionnaires but will also be able to accompany them to any medical assessments that might take place. We want an assurance that parents will be allowed to advocate for their adult children. We want an assurance that the DWP medical assessors will be suitably and correctly trained to understand the complexities of autism. We want an assurance that adults with autism will be able to record their medical assessments. We want to know that adults who are not being specifically seen by anyone in the medical profession concerning their autism will be able to access help should they need expert supportive evidence about their condition.

We have opened a new ACT NOW Campaign Page on Facebook and we are asking people to contact us as soon as they are aware that the budget cuts to Local Authorities and Primary Care Trusts are starting to affect them or services and provisions in their area. This is going to be a major part of our campaign but one which we know will take many months of information collecting before we can write another report detailing how the budget cuts are impacting within our community.

We will continue to seek assurances that the demise of Primary Care Trusts which are to be replaced by GP consortia will result in ALL GPs being correctly and appropriately trained to meet the needs of all of the patients who are on the autistic spectrum.

We have already asked for a reassurance that Local Authorities will have to record data and publish accurate records of children who are in their area who have a diagnosis of autism. This is in line with the promise that was made by Phil Hope that it would be the responsibility of Children’s Trusts to ensure that they were aware of and record the numbers of children who have a diagnosis of autism so that they can provide for those children and meet their needs. The new Government has stated that it will no longer be mandatory for Children’s Trusts to publish a Children’s Plan and ACT NOW want an assurance that this Government will ensure that Children’s Trusts will have to commit to officially recording data for children who have a diagnosis of autism.

We have so far personally handed out a copy of the ACT NOW Impact Assessment to:-

David Cameron via No 10 (we have a confirmation letter that Mr. Cameron has received our report)
Paul Burstow MP
Maria Miller Minister for Disabled People
Charlotte Leslie MP Chairperson APPGA
Paul Maynard MP
Lord McKenzie
Theresa May MP
Sara Teather MP
Lord Willis of Knaresborough
Stephen Pound MP
Robert Evans MEP

With reports to the following people being sent out by post:-
Iain Duncan Smith
Lord Ashley of Stoke
Baroness Greengross
Baroness Massey
Baroness Morris of Yardley
Lord Adebowale
Lord Parekh
Lord Puttnam
Lord Bichard Lord Laming
Lord Dholakia
Lord Ouseley
Lord Hattersley
Lord Bassam
Baroness Boothroyd