Tuesday, 4 January 2011

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 3rd 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

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