Move from DLA to PIP


A little later on this month I have an appointment to speak with my local MP at his surgery and he is going to get me an appointment to speak with a government minister about the new PIP system. We are legal guardians for our 13 year old grandson who has high funtioning autism with extremely challenging, violent behaviours and crippling anxiety levels and we, at present, receive DLA Care Component at the higher rate and mobility at the lower rate for him. I don't want to waste either appointment as they wont be very long and want to ask clear,concise and searching questions about the new PIP system. With only three years to go before our grandson will have to apply for PIP and probably face an assessment where, being academicall able, he is liable to score few points,  there are many worries that we have. Any suggestions as to what questions I should ask? These have already occurred to me:

Why have life long incurable conditions like autism been included in the mix.

How often will an autistic adult be reassessed.

Has any account been taken of the massive stress that an autistic person will be under during any assessment.

Why are there not a special set of questions for people on the autistic spectrum which will take into account, the very complex nature of the condition.

If a 16 year old with autism loses their right to PIP following assessment what are they supposed to do for income as the school leaving age is shortly to be raised to 18. They, therefore, one assumes cant even sign on as unemployed. (Not that our grandson could cope with job interviews either).

How will the government excuse the fact that should somebody at present claiming higher or middle rate DLA lose their benefit, then their carers will not only lose their carers allowance but also the disabled element of child tax credits, if they are still at school. These would amount to thousands of pounds per year and would leave parents trying to cope with what is a costly condition on a vastly reduced income.

How can an assessment carried out by someone not trained in the complexities of autistic behaviour be regarded as enlightening as assessments carried out by the doctors, psychiatrists and social workers already working with the claimant?

Any suggestions would be gratefully received and I will post the response I get.

  • I am afraid it is all to do with saving money and hitting  out at the most vulnerable in society. My daughter has ADHD low !Q and EUPD She had DLA from an early l age but two years ago was asked some trick questions  at an assessment and subsequently refused PIP. She can’t even add up for goodness sake !. Anyway her doctor was furious about the decision and has suggested we try again this year.  

  • Are the assessors trained to assess capacity. For example, many autistic people will answer questions literally or may not fully understand the importance of the assessment or what it actually means. This was true for me at an ESA assessment and looking back, at the time, I lacked the capacity to answer their questions or fully understand the assessment. I was depressed at the time as well which impaired my judgements. 

    You mentioned the stress of the assessment and I also think it brings in the matter of dignity. I know this applies across the board but autistic people require recognition and acceptance and support to reach our potential and putting us through these dreadful assessments is only adding to a lowered sense of self esteem. 

    I’m just thinking off the top of my head, you’ve got some good questions. Well done you for doing this. 

  • Please sign and share this. We're trying raise awareness of ASD in the government eyes because the assessments are a complete shambles for those on the spectrum. 

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