Letter to the DWP Select Committee

DWP Select Committee Members are: Dame Anne Begg (Chair) Labour, Harriett Baldwin Conservative, Andrew Bingham Conservative, Karen Bradley Conservative, Alex Cunningham Labour, Kate Green Labour, Oliver Heald Conservative, Glenda Jackson Labour, Brandon Lewis Conservative, Stephen Lloyd, Liberal Democrat, Teresa Pearce Labour

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Dear Members of the DWP Select Committee

I am writing to you on behalf of ACT NOW (Autism Campaigners Together) a group of people passionate about the future and wellbeing of children and adults with an Autistic Spectrum Condition in the UK.  ACT NOW is run solely by volunteers the vast majority of whom are living with autism 24/7.

The ACT NOW Campaign currently has over 8000 supporters. We have 13 Regional Groups including a group in Scotland, Wales and Northern Ireland, 25 Regional Coordinators and our support continues to grow on a daily basis.  ACT NOW is also supported by autism professionals, groups and organisations that support families living with autism and adults with autism here in the UK. 

The Welfare Reforms and the Works Capability Assessments that are to be rolled out across the UK on February 28^th are a source of huge concern for ACT NOW and our supporters. We believe that these assessments will place adults with autism at a huge disadvantage.  

ACT NOW believes that the WCA process is fundamentally flawed and unless the present method of assessment is completely overhauled, adults with autism and adults with other complex disabilities will continue to suffer and be punished for having a disability which does not fit into the current assessment framework.

These sentiments were echoed in an article published in the Guardian Newspaper Tuesday 22^nd February where Professor Paul Gregg (economist and welfare reform expert) stated that a ‘rushed roll out of the work capability assessment will cause more anguish’ and that ‘the test is badly malfunctioning. The current assessment is a complete mess’.

We believe that unless the offer of an independent advocate/communicator is made to every adult with autism at the first point of contact, that the DWP are probably breeching the Equalities Act by failing to make reasonable adjustments for someone whose disability impairs both their receptive and expressive language, thus affecting every communication that they make.  

The very core of our campaign relates to how people with Autistic Spectrum Conditions will perform in assessments. Adults with Autistic Spectrum Conditions infrequently represent how their disability impacts on them accurately. These assessments are wrapped around the medical and social model of disability and are in effect discriminating against adults with autism who do not have a medical disability and who continue to fall between the cracks of the medical and social model of disability. 

After writing to Chris Grayling regarding our concerns we received a reply informing us that Atos assessors are specifically trained in the assessment of disability. He states that ‘the medical disability analyst will be able to provide an accurate and consistent assessment of functional restrictions.’ 

Autism is not a medical disability. It is a complex condition whose roots are firmly planted in social and communication impairments.  Autism is diagnosed using a triad of impairments which are communication, socialisation and imagination. It can take months, sometimes even years to obtain a diagnosis of autism. It is difficult to understand how after one assessment it will be possible for anyone who does not understand the complexities of autism to accurately assess the difficulties that that person may have in their everyday lives. 

Mr. Grayling also stated in his letter to ACT NOW that any additional medical evidence that is presented to the Atos assessor by an adult with autism will be treated as purely secondary information. He states that clinicians do not routinely consider the impact that a disability a person has will impact on their ability to function. This greatly worries ACT NOW and our supporters. 

It is our understanding that the Atos assessment is based on an assessment that originated in America and which was used by the Unum Unumprovident, Provident Life, and Paul Revere companies. We also understand that Unum Unumprovident, Provident Life, and Paul Revere companies have been named in almost 5,000 civil actions concerning insurance from 2000 to the present.

We are aware that problems that came to light with the assessment process were disabilities wrapped around mental or nervous disorders which could not be proven by hard medical evidence such as an x-ray. Autism is not a medical condition.

ACT NOW believes that it is both cruel and immoral to subject someone with autism to an assessment which does not in any way reflect the vastness of the autistic spectrum.

It is unquestionably the case that adults with autism often find it difficult to fill in the forms that are usually required to be completed prior to assessments. This is because it is not only their verbal communications that are impaired, but also all other forms of communication including written communication.

Given that it is highly likely that adults with autism will be placed at a substantial disadvantage by these assessments, it is vital that everything is done to support a person during the process. It is essential that the relevant public bodies are proactive in offering and supplying independent and meaningful support at the earliest opportunity.

ACT NOW has been told by adults with autism and their parents and carers that although they are informed that someone can attend an assessment with them, the person attending with them is not always allowed to speak on behalf of the adult. Some parents are reporting that they are not being allowed into the assessment room with their adult child. We have heard via one of our supporters whose daughter is almost non verbal, that while she was allowed into the room with her daughter during the assessment she was not allowed to speak. We find this very disturbing. Adults with autism require someone who can both interpret and communicate on behalf of the person with autism. Interpreters would be provided for anyone who could not speak English. We believe that adults with autism require the same type of adjustment to ensure that they can communicate effectively.

As Atos are part of a consortium which intends to bid for Work Programme provision contracts ACT NOW believes that there is a fundamental and irreconcilable conflict of interest here – part of which is the possibility of bias entering the DWP Medical Assessment, where Atos know that finding somebody fit for work might bring more business their way, whereas finding them unfit for work would not do so.  We have also heard that Atos have targets to meet for getting people off ESA benefit and onto Job Seekers Allowance.

Autism is not an illness. Adults with an IQ of over 70 often do not meet the criteria to be even seen by anyone who has an expertise in autism. It is only now that it has been stated in the Guidance which accompanies the Adult Autism Strategy ‘Fulfilling and Rewarding Lives’, issued in December 2010, that IQ must not be used as a reason to deny an adult with autism an assessment for services or provision. Thus there are huge numbers of adults who have been denied access to assessments for services and provisions, many of whom are hidden within our communities unsupported.   

There is currently no adult autism strategy in Scotland; provision is not statutory once someone with an IQ of higher than 70 reaches adulthood. Adults with an IQ of lower than 70 still have little support and have to fight for what they need. Who will support these adults and provide any additional evidence if required?  Only 7,500 people with autism are known to local authorities in Scotland although the National Autistic Society concluded that, including parents and carers, there are some 200,000 people affected by autism in Scotland. 

We believe that it is unlawful on human rights grounds to force disabled individuals with Autism and Aspergers Syndrome to engage in a process where they are substantially disadvantaged. We believe that being unable to communicate effectively could impact on the health and wellbeing of an adult with autism and the Equalities and Human Rights Commission agrees with us.

ACT NOW would like to request an opportunity to meet with the DWP Select Committee so that we can discuss with you, in person, the concerns that not only the ACT NOW core group has, but the concerns of many thousands who are living with autism everyday share. 

Carole Rutherford

Campaign Manager

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

Please ACT NOW and make important changes for Autism!

Our Campaign Manager, Carole Rutherford, recently attended a North East Autism Consortium where some of the important changes that will be taking place during the next two years were outlined. These changes include the implementation of the Autism Strategy, the change over from PCT to GP Consortia, the importance of local Joint Strategic Needs Assessment (JSNA) and Health and Wellbeing Boards. 
NOW is the time to start asking questions of our Local Authorities to ensure that we are involved. 



Every Local Authority in England has a JSNA (Joint Strategic Needs Assessment) http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_081097

The JSNA can, or at least should be found on your local council’s website. Some JSNAs have not been updated since 2007 when they first came into being. My own LA reviewed its JSNA in 2009 and autism was not included into the JSNA at that point.

JSNAs are now being reviewed because the transfer of power from the Primary Care Trusts (PCT) to the GP Consortia will of course change the JSNA.

‘The Local Government and Public Involvement in Health Act 2007 requires PCTs and local authorities to produce a Joint Strategic Needs Assessment (JSNA) of the health and wellbeing of their local community.This guidance, which complements the statutory guidance Creating Strong, Safe and Prosperous Communities, provides tools for local partners undertaking JSNA. It describes the stages of the process, including stakeholder involvement, engaging with communities and recommendations on timing and linking with other strategic plans. It also contains guidance on using JSNA to inform local commissioning, publishing and feedback.’

Autism MUST be included within the JSNA otherwise there is no hope of any new services being commissioned for autism, because the JSNA is the tool which is used to inform local commissioning. The JSNA is where data for teens and adults with autism will be collected. Unless the data is correct the services will not meet the needs of adults with autism and will not plan the way ahead for services and provisions.
In some areas data is being collected via GPs.  

The questions to ask of your GP are:-

1. How is autism coded on their system?
2. Have they been asked for data regarding the number of patients they have with a diagnosis of autism?
3. How do they trawl through their records to ensure that everyone who has autism and is one of their patients is included in the data that they are providing?

The JSNA is one of the drivers for the Autism Strategy making it vitally important for parents/carers and adults with autism to find out how they can feed into the JSNA.  Local Authorities MUST consult with stakeholders. Some are doing that right now. Parents, carers and adults with autism need to find out who the stakeholders are and how they can be included.

Although the Autism Strategy in no way reflects the needs of teens and adults with autism it does give us a framework to work with and with a strong local voice it is possible to ‘encourage’ your LA to actually improve on the strategy.

LAs will have a Health and Wellbeing Board. These boards are going to cover every aspect of health and wellbeing (as you would expect) and that includes autism. They are now very much at the forefront of our LAs because of the Health and Social Care Bill currently making its way through the system.

These boards are also going to be involved in the change from PCT to GP Consortia. Parents and Carers need to be finding out NOW how they can be involved and feed into the Health and Wellbeing Boards and also how they can help to shape the GP consortia in their area.

One way to find out what changes are happening now and how you can be involved is though your local LINK (Local Involvement – soon to be Health Watch) network. You can find your local link here http://www.nhs.uk/NHSEngland/links/Pages/links-make-it-happen.aspx
LINK must act if there are a group of people who are keen to be involved with something happening in their area which could affect their health.

Letter to Chris Grayling MP Minister for Employment

Dear Mr. Grayling

Thank you for your letter dated 20^th January 2011, however we feel that you have failed to answer some of the questions we asked in our letter dated 13th December 2010.

We are pleased to be informed that the ATOS assessors are aware of the potentially disabling effects of impaired social interaction, language and communication skills in people with autism and that they are determined to assess customers with autism fairly and accurately.  Unfortunately your letter failed to give us an explicit assurance that all of the ATOS assessors are suitably trained, that the training is accredited and being overseen by an independent body.  Can you please assure us that this is indeed the case with all current ATOS assessors and will be true of assessors being appointed?

Every person with a diagnosis of autism has a significant communication and socialisation impairment; even those with Aspergers Syndrome who often are deemed to be more able than those with a diagnosis of autism. ACT NOW is being told about the inadequacies of the ATOS assessors, that they lack a basic understanding and awareness of the condition of their customers.  We are alarmed that assessors are even overturning professional medical evidence. We do have case studies in support of this.

In your letter you state that the Works Capability Assessment was developed in consultation with disability groups including the National Autistic Society. The NAS states however, as part of an introduction written for Professor Harrington (heading the Independent Review of the Works Capability Assessments for the DWP) that they, along with other organisations, have: 

‘experienced some difficulties engaging with the Department for Work and Pensions around welfare reform and at times, have felt that our attempts to influence the process have been limited, with little evidence that our concerns and objections have been considered, and yet our involvement in consultation has been used by government as a source of legitimacy for reforms.’

Professor Harrington has asked the National Autistic Society, Mencap and Mind to propose amendments for the WCA descriptors.

We believe that there are a great many factors to be taken into account when a WCA is undertaken on an adult with autism. The capability to work or the inability to be capable to seek or maintain employment, for some adults has been heavily influenced by the failure of the state to provide a suitable education and suitable health care, therapies and interventions for these adults, often throughout their childhood. There is substantial recorded evidence of systemic failure to provide suitable education, therapies and interventions for children with autism (see *1,2,3,4)

Even with Works Choice it is difficult to imagine that some adults with autism are going to be able to not only seek employment but also take up their place in a work environment, whilst lacking the basic skills denied them throughout their childhood, and without which it will be very difficult or in some cases impossible for them to successfully maintain their employment.

ACT Now has heard from adults with autism who want to work and some of whom have worked, that if they are finding it hard to cope with their employment and have asked their employers to contact Prospects (employment consultants offering advice, support and training to managers and their teams) their employers fail to do so, leaving those adults to fail again.

Both children and adults with autism find it extremely difficult to start over after they have experienced a failure in their lives, often requiring enormous amounts of support to be able to do so. The Autism Strategy, which many parents and adults believe will not make the difference that we had so hoped for, has not yet had the chance to bed in and so it is too early to determine if there will be any additional and maintained support for our adults in both seeking and maintaining employment.

Whilst ACT NOW understands that being able to record a WCA would undoubtedly be a step in the right direction, it does nothing to reduce the levels of stress or anxiety that adults with autism will experience prior to their assessment unless they are able to access, in their own right, appropriate support. ACT NOW has been speaking to adults with autism and organisations supporting adults with autism and we are being told that people are worried, some even terrified, at the prospect of WCA assessments.

There is a huge amount of stress and anxiety being experienced by adults who so far have not even been asked to attend a WCA, such is the fear factor that is surrounding these assessments.  Even the thought of an assessment is affecting their mental health. This of course is not being helped by revelations coming to light that there appears to be clusters of adults in some areas all being declared fit to work when from evidence on the ground, demonstrably they are not.

ACT NOW is making a national call for Advocate/Communicators for all adults with autism. We believe it is essential that all adults with autism are offered support, at the first point of contact, when it is known a WCA is going to take place. It is unquestionably the case that adults with autism often find it difficult to fill in the forms that usually are required to be completed prior to assessments. This is because it is not only their verbal communications that are impaired, but also all other forms of communication including written communication.

Given that it is highly likely that adults with autism will be placed at a substantial disadvantage by these assessments, it is vital that everything is done to support a person during the process. It is essential that the relevant public bodies are proactive in offering and supplying independent and meaningful support at the earliest opportunity.

There are many adults in our community who no longer have parents to support them and who have not been seen by the medical profession for many years and so they will have no medical evidence that they can submit to the WCA assessor. Who will these adults be able to access for additional evidence about their condition on their behalf? Autism is not an illness. Adults with an IQ of over 70 often do not meet the criteria to be even seen by anyone who has an expertise in autism. It is only now that it has been stated in the Guidance, issued in December 2010, that IQ must not be used as a reason to deny an adult with autism an assessment for services or provision. Thus there are huge numbers of adults who have been denied access to assessments and many adults are hidden within our communities unsupported.

ACT NOW must point out that it is unlawful to force disabled individuals with Autism and Aspergers Syndrome to engage in a process where they are substantially disadvantaged.   Furthermore, public bodies need to be mindful of the fact that failure to provide appropriate support will further undermine self confidence and life chances of a group of people who are without question one of the most disadvantaged in our society.

ACT NOW has the support of over 8,000 members of the autism community. The overwhelming majority of our supporters either have autism or are the parents of those with autism, in other words people on the front-line all day, every day.  We speak on behalf of a considerable number of people and believe it would be most helpful if representatives from ACT NOW were able to meet with you to discuss what we believe to be justifiable and serious concerns about the Works Capability Assessments and the process leading up to and after these assessments.

Yours sincerely

*1 Schools fail autistic children - http://news.bbc.co.uk/1/hi/education/5350506.stm

*2 The Cost of Inclusion http://aim1he.wordpress.com/category/the-cost-of-inclusion/

*3 House of Commons Education and Skills Committee http://www.publications.parliament.uk/pa/cm200506/cmselect/cmeduski/478/478i.pdf

*4 Lamb Inquiry http://www.dcsf.gov.uk/lambinquiry/downloads/8553-lamb-inquiry.pdf

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)

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