Letter to Esther McVey MP, Minister for Disabled People

Dear Ms McVey,

We are writing to you on behalf of our 12,000 supporters to share their concerns regarding adults with autism and the change from DLA to PIP.

We know that the vast majority of  PIP assessments will be made no earlier than October 2015, which is why we are raising these serious concerns now, in the hope that you may look again at the assessment process. We want you to ensure adults with autism are not discriminated against because they do not possess the historical and medical data that will determine if they will need to have a face to face assessment and subsequently if they will qualify for PIP. 

We would welcome the opportunity to meet with you to discuss this fully.

Autism is not a medical condition nor an illness so many adults are not seen routinely by any medical professionals.  Adults with an IQ of over 70 often do not meet the criteria to be seen by the few professionals who are autism experts. There are often no services for adults with autism to access, this is despite many of our adults desperately needing to access services and provision.  The historical and medical data that will decide whether or not they will have a face to face PIP assessment simply does not exist for many thousands of adults with autism.

The Adults Autism Strategy ‘Fulfilling and Rewarding Lives’ has to date, done very little to improve access to services and provision for adults with Asperger Syndrome and High Functioning Autism.
Carole Rutherford, national coordinator for Act Now For Autism, raised concerns about the continued lack of services, advocacy and provision for adults with Asperger Syndrome and High Functioning Autism when she had the opportunity to speak to Norman Lamb at an All Party Parliamentary Group for Autism meeting last month.

Autism is a communication disability, so adults with autism who have no background evidence of how their condition impacts on them are going to be at a distinct disadvantage from the start of the process. Anyone who has been and is being seen regularly by doctors, consultants and social care professionals are able to supply evidence which will substantiate the impact that their condition has on their lives.

Many adults with autism already have to endure the Work Capability Assessment process without any support. Act Now For Autism has been campaigning for advocates for adults with autism from the first point of contact regarding ESA. We believe autism trained advocates should be offered at the first point of contact re applying for PIP.

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.

There are many adults in our community who no longer have parents to support them. Who will these adults be able to access for support, advocacy and for additional evidence about their condition on their behalf? By their own admission 80% of GP's do not know enough about autism to help their patients or to signpost them to services that could help them.

There is no exact data as to how many adults with autism there are in the UK. Many adults with autism are hidden within our communities, and many of them only survive because of their DLA, which enables them to pay for the additional costs they face because of their condition.

Autism is a complex condition and the community of autistic adults across the UK are going to need a lot of support to navigate through all of the changes brought by the Welfare Act 2012. 

We look forward to having the opportunity to discuss this further in person with you.

Regards

Act Now For Autism 


Act Now for Autism is a core group of people passionate about the future and wellbeing of children and adults with an Autistic Spectrum Condition in the UK. The Core Group members of Act Now for Autism and all of the Regional Coordinators live with autism.

On the 18th October 2010, 6 of our Founder Members handed over a petition at 10 Downing Street with over 6,000 signatures in support of the Act Now for Autism campaign.
                
This was preceded by the official launch of an Act Now for Autism Impact Assessment Report. The report contained the concerns and views of 2924 people who either live with autism or are autistic themselves. We had a greater response for input into our report than Brian Lamb did into his 18-month long Inquiry into the whole of special educational needs.
  
As well as the core group we have a group of coordinators who cover 13 regional areas in the UK including Scotland, Wales, and Northern Ireland. 

We have active supporters on all of these groups who are keeping us informed about changes to provision and services in their area. We are also receiving information through our groups about the benefit assessments that adults with autism are having. We hear from adults with autism who are undergoing benefit assessments, and are suffering from extreme anxiety as a result of their assessment, on a daily basis. 

We currently have more than 12,000 supporters and the number of supporters continues to grow on a daily basis.