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