Email from the President of SAFE (Supporting Asperger Families in Essex)

I am the President of SAFE (Supporting Asperger Families in Essex), a local charity run by unpaid volunteers like me.  I run ASAP (Asperger Syndrome Adults and Parents).

So far I have ten adult members in North Essex reporting that following a Work Capability Assessment, they have been taken off long-term Incapacity Benefit and have been declared 'fit for work' despite supporting evidence to the contrary from Consultants, social workers and GP's.  This has left these adults in a state of despair and their mental health has spiralled down into deep depression.  Their families are also badly affected.

It is all too obvious that the ATOS healthcare professionals who carry out these Assessments have had NO appropriate training in ASC, and are not taking this evidence into account when making their decisions.

This is a shocking and discriminatory tactic to force vulnerable autistic people into looking for work which is not there, and setting them up to fail, thus increasing their sense of low self esteem.

I am doing what I can to raise awareness of this issue in Essex and have advised people to appeal against these decisions with ATOS and the DWP, but I fear their understanding of autistic difficulties regarding employment is zero.   I am deeply concerned.

Keep up the good work!

Our reply to SAFE

We are almost speechless and certainly shocked and disgusted. We are however sadly not surprised. Would you like ACT NOW to flag up what has happened in Essex? Have you written to any Ministers about what has happened? Also would you mind if we added it to our list of cuts and changes please?

We have heard that the ATOS health care professionals are going to be given a training module on autism. We are at the moment trying to find out what that module will include and who put it together. However clearly these assessments are up and running without any training being given to these assessors and this really shows that they neither care nor feel any responsibility towards people with autism enough to get it right.

We are at the moment trying to set up an ACT NOW network and are asking people if they would be willing to be coordinators because we want to gather as much information as we possibly can about what is happening in every area across the UK. I know that that is a tall order but we currently have 6000 supporters so we are hoping that we get a good response from them.

Please do keep in touch with us. We all need to act together if we have any hope of being heard, and we are afterall the people who are living with autism 24/7.

Letter sent via email to Chris Grayling MP, Minister of State for Employment, Department for Work and Pensions

Dear Mr. Grayling

I am writing on behalf of ACT NOW (Autism Campaigners Together).  ACT NOW was founded by seven parent carers and adults with autism in July of this year, following the June 22nd budget which announced the cuts to Local Authorities and PCTs and the proposed assessments that will be carried out on adults, and possibly children, who are in receipt of Disability Living Allowance (DLA) and Employment Support Allowance (ESA).  

The budget cuts and benefit assessments are a huge cause of concern, not only to the founder members of ACT NOW but also to the 6,000 members of the autism community who are actively supporting the ACT NOW Campaign.

On the 22^nd of November this year Anas Sarwar, Labour MP for Glasgow Central, asked you what training health care professionals carrying out the Works Capability Assessments receive on autism and if training forms part of their continuing professional development.  You responded to this question by stating:-

 ‘All health care professionals working for ATOS Healthcare who carry out assessments for employment and support allowance are issued with evidence-based protocols on mental health conditions, including information on Autistic Spectrum Disorders, as part of their induction training.

In addition, all health care professionals are required to engage in a programme of continuing medical education.  ATOS, in conjunction with DWP have developed a number of training modules in Autistic Spectrum Disorders to support this programme. These include a "learning set" on ADHD and Aspergers Syndrome for employed health care professionals, a distance learning module with accompanying DVD on Asperger Syndrome for sessional doctors and a presentation on Autism at a medical conference attended by all employed health care professionals in 2008.  ATOS have also developed and issued a further distance learning module for sessional doctors called "Life with Autism - seeing the individual" this year (2010).’

ACT NOW would like to have clarification on what is included in the autism training modules that have been developed by ATOS and the DWP.  We would also like to know if the DWP and ATOS are now skills based organisations and accredited/licensed trainers?  Who, if anyone, helped ATOS and the DWP to develop these modules?  Is the training being monitored and evaluated and who, if anyone, oversees the training and how often and when will this be done? Furthermore is this training mandatory and what legislation sets this out and how will the training be delivered and over what time frame? is there a deferral process? 

ACT NOW are very concerned by reports that we are receiving from individuals and groups regarding the ATOS assessors who appear to have had no appropriate training in Autistic Spectrum Conditions. We are being told that the ATOS assessors are not taking this evidence into account when making their decisions. We are aware that in one area alone 10 individuals with autism have been declared ‘fit to work’ after being assessed by an ATOS assessor. We have had additional reports from ACT NOW supporters of this happening in other areas.  ACT NOW would like reassurance that all of the ATOS assessors are suitably trained and that the training which they are receiving is accredited and being overseen by independent means.

We would like to request a meeting with you so that we can further discuss the concerns of the ACT NOW Campaigners and our supporters. It is vitally important that the autism community feel confident that our adults with autism will be assessed by professionals who fully understand the complexities of autism.

We look forward to an early response to this letter.

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

To the Policy Officer NAS from ACT NOW

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

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

NAS Response

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

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

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

Disability Living Allowance Reform and Autism - our response

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

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

Dear Mrs. Miller

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

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

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

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

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

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

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

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

Yours sincerely

Carole Rutherford

Campaign Manager/Founder

Area Coordinator Role

The ACT NOW Campaign has now entered its second phase. The founder members of ACT NOW are hoping to be able to work hand in hand with our supporters, so that together we can make sure that we record a comprehensive list of the cuts to support, services and provision in as many areas of England, Scotland and Wales as we can. By recording how the cuts are impacting on families and adults living with autism we will be able to publish a report proving that some of the most vulnerable people in the UK are being affected by the budget cuts to Local Authorities, Primary Care Trusts, Children’s Services, Area Health Authorities as well as the cuts to benefits.

ACT NOW need volunteer coordinators to record the cuts in their areas. We are defining an area by the County Council, Local Authority, Primary Care Trust, Children’s Services and Area Health Authority from whom you receive, or could receive services, support and provision, if you were eligible.

In addition to this we would record any cuts that impact on further and higher education establishments, supported housing/employment etc. We would like if possible to cover and record the cuts across the public, private and voluntary sectors. The more information we can share with each other the more we will know just how much the cuts are going to impact on our lives.

We realise that this looks as if it will involve a great deal of work but the more area coordinators we have the easier the job will become. Any letters that we might ask our coordinators to send to the Local Authorities etc will be written and available to download on our website.

We will help our Area Coordinator to make contact with local support groups both where they live and on-line. This will enable us to find out firsthand how and where the cuts are impacting within the autism community.

What we are NOT asking anyone do to is to snoop or name names. We do not want the names of any of the families in your area who have lost services, provision or support who have been affected by the cuts. We simply want to know the services, provisions and support that have been lost in your area and what those cuts are. We are NOT trying to alienate Local Authorities etc or be in any way vexatious, we simply want to know how the cuts to their budgets have impacted on the services that they offer.

If you are interested in working with us and becoming an ACT NOW Area Coordinator please contact us here or via email act.now@btinternet.com.  Please also contact us if you have any questions that you would like to ask about the role of an ACT NOW Area Coordinator.

Carole Rutherford - Campaign Manager

Website update/Area Co-ordinators needed!

Go check out our new page About ACT NOW for details about Phase Two of our campaign!

If you would like to become an Area Co-ordinator to record cuts in your area, please do not hesitate to get in touch by leaving a comment here, sending us an email or leave a message on our Facebook group

Every Disabled Child Matters Campaign responses

One of our Facebook group members has received a reply from her MP about SEND and EDCM campaign.  Basically its a standard reply letter as I myself have just received the exact same one from our MP David Gauke, both Conservatives.  So if you signed up to support the campaign, this is the bog standard response you will get!  Our response is that this letter is corporate bullsh*t. These people really do believe their own spin. Only time will tell how much difference the Childhood and Family Task Force are going to make. Very little we would imagine. Maybe we should start writing to Labour MPs and the Band of Brothers guy who is leading them saying that we are in the mess that we are in because of them. Would they come out fighting do you think? Maybe not.......

However, if you signed up in support of this campaign we would like to hear from you if you have a Labour MP.  Our Campaign Manager Carole has received a reply this morning from her own Labour MP:-

Julie has written to Michael Gove and Andrew Lansley on the matter and when we receive a reply, we will get back to you.
With best wishes.
GRAHAM MARCH
Senior Parliamentary Affairs Assistant to Julie Elliott MP

Tory Response

Dear

Thank you for taking the time to contact me about children with special educational needs and disabilities (SEND) and the Every Disabled Child Matters (EDCM) campaign.

I understand your concerns regarding the difficulties faced by families with children with SEND. It is clear that life can often feel like an uphill struggle for young disabled people and their families. Moreover, I am very concerned about the provision of education in this country for children with SEND. Unfortunately, the sad reality for too many families is that the provision for SEND is designed to fit the money and resources available to a local authority, rather than a child’s specific special educational needs.

I believe that people needing care deserve to be treated with dignity and respect. I am pleased therefore, that the Government is also determined to ensure that disabled children are a key priority. The Prime Minister, David Cameron MP, and the Deputy Prime Minister, Nick Clegg MP, will both be taking part in the Childhood and Family Task Force. The Task Force will look at the challenges that face disabled children and their families. Challenges like poverty and relationship breakdown.

I realise that this Government has had to make tough spending decisions. This is a result of the previous Government leaving the largest peacetime deficit in history. However, both this Government and I are committed to reducing the deficit, ensuring that our children do not pay the price for this generation’s mistakes.

I have always believed that the most vulnerable children deserve the very highest quality of care. I am pleased therefore, that the Government has announced that it will be bringing forward a Green Paper which aims to improve radically the entire SEN system and will cover issues including school choice, early identification and assessment, funding and family support.

Yours sincerely

GORDON HENDERSON MP

ACT NOW! You're the Voice!

Letter to Maria Miller - Minister for Disabled People

Dear Mrs. Miller

Following our brief meeting and discussion at the joint meeting with the All Party Disability Groups on 18^th October, I am writing to you as requested to outline the concerns of the parents, carers and adults with autism who are actively supporting the ACT (Autism Campaigners Together) NOW Campaign.

Only in autism does it appear to be possible to develop speech without an underpinning of communication. This is a very important factor that must not only be taken into account when someone is communicating with someone on the autistic spectrum, but must also be fully understood.

Unlike a typical child, where communication precedes and is the context for language development, in a child or adult who is on the autistic spectrum, speech, reading and writing may develop without communicative underpinning. This means that speech may not be used for communicative purposes in the way that most of us would expect to be the case.

We must therefore not assume that an adult with autism, and that includes adults with Aspergers Syndrome and High Functioning Autism, who has good speech and language abilities will necessarily understand speech and language. Children and adults with autism have problems with both receptive and expressive language which impacts on every aspect of their social interaction and communication and that is why ACT NOW and our supporters are so concerned about the benefit assessments that adults with autism will have to be subjected to.

We would like it to be recognised, accepted and acted on by the Department for Work & Pensions 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. Those impairments will also impact on their ability to successfully understand and fill in any associated questionnaires that they may be required to fill in prior to a medical assessment.

We would like an assurance that the Employment Support Allowance, Disability Living Allowance and Incapacity Benefit assessments are tailored to meet the needs of adults with autism. This includes the assessment questionnaire and how it is worded for adults with autism.

We would like an assurance that all adults with autism will not only be able to access a fully trained advocate to assist them filling in benefit assessment questionnaires, but will also be able to accompany them to any medical assessments that might take place.

We would like an assurance that parents will be allowed to advocate for their adult children with autism.

We would like an assurance that the DWP medical assessors will be suitably and correctly trained to understand the complexities of autism.

We would ask the DWP to allow all adults with autism to have the opportunity to record their medical assessments.

We would like to know if adults with autism will be able to supply the DWP assessor’s supportive evidence to verify the extent that their autism impacts on their lives.

ACT NOW is very concerned that there are a number of adults who have been without services, provision and support since leaving Children’s Services. We would like to know who these adults will be able to call on if a DWP assessor decides that they require additional information about that adult before making a decision regarding their entitlement to benefit.  Who will these adults with autism be able to access help from should they need expert supportive evidence about their condition?

Currently it is our understanding that those adults who are in receipt of the high rate component for care Disability Living Allowance will not require an assessment to continue to claim Employment Support Allowance.  We would like to know if this will continue to be the case for those adults in receipt of Incapacity Benefit who will begin the transfer onto Employment Support Allowance from March 2011.

We look forward to your earliest response on these matters.

Yours sincerely

 

Alison Wiles

Founder

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