Wednesday, 8 December 2010

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 5th November and the same letter to you via email on 30th 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


wendy said...

This is a very worrying time for us families with Autism. I am worried (very) for my son, albeit that he is only 10 yrs old. However I worry for his future, He has little understanding of daily life, money, work etc.
I am a very concerned parent.
Thank you for undertaking this on behalf of people conected with Autism. I appreicate the help & care of you all
wendy xxx

Katherine said...

As the above parent has stated the future for our autistic child(ren) is unknown and difficult already, any reform where parents are not included in its 'change' will be detrimental!!
We must be involved its of paramount!! There is already little awareness!!
The future for any parent regarding their child is a scarey one, but for those of us that are in the 'special needs umbrella', where our children have complex needs is one that is unexplainable

Karen said...

I am an adult with HFA and have 2 sons with Asperger Syndrome. I was unable to claim DLA as they said I was not 'disabled' enough but I receive lower rate care for my 13 yr old and middle rate care for my 8 yr old. If my sons required an 'interview' for DLA I would not be able to take them as I rarely leave the house but if my husband took my sons they would show very little signs of their Aspergers but would show their anxiety before the 'interview' (refusing to get dressed, refusing to eat, refusing to get into the car etc) and would definately show signs afterwards (head banging, messing themselves, wetting themselves, running away from me onto roads etc so how on earth can signs of their 'disability' be 'proven' or assessed in an interview?!

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