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Move from DLA to PIP

Blossom59

Hi,

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 academically 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.

Parents

  • Blossom59 said:

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

    ...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).

    I think that the first of these is crucial: I have recently been applying for PIP and it was very stressful.  Yes, it's not going to be easy for anybody but if you are autistic and very prone to anxiety (and have to get everything exactly right) it is overwhelming.

    I'm a bit confused about the second, as my understanding has always been that DLA/PIP are meant to be about meeting the costs of a disability and not "income" as such.  So I don't quite understand where not being able to sign on as unemployed/start work comes into it.

    A very big issue to me is that there is nothing between the base rate (£53) and nothing for daily living, and you have to get too many points to get to that.  The result is likely to be that people who would still face very significant expenses associated with their disability will not get anything because they are half-way to the base rate.  E.g. Needing social support to be able to mix with other people gets you four points or needing support to "express or understand complex verbal information" gets you four points.  Or needing assistance to manage toilet needs gets you four points.  Each of these is very significant even on their own but only get you half way to getting any financial support.  Even half of the base rate is £26.50 per week, or £1,378 per year!  That's far from a trivial amount, even ignoring whether it is adequate to cover the above needs.  Are people with this level of need supposed to just find that money themselves?

    I've not looked into the mobility component so much but the threshold to get anything for a physical problem with walking is very low: 200 meters!  My life would be turned upside-down if I couldn't walk ten times that.  I wonder if the people writing the forms just assumed that everybody has a car anyway.

Reply

  • Blossom59 said:

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

    ...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).

    I think that the first of these is crucial: I have recently been applying for PIP and it was very stressful.  Yes, it's not going to be easy for anybody but if you are autistic and very prone to anxiety (and have to get everything exactly right) it is overwhelming.

    I'm a bit confused about the second, as my understanding has always been that DLA/PIP are meant to be about meeting the costs of a disability and not "income" as such.  So I don't quite understand where not being able to sign on as unemployed/start work comes into it.

    A very big issue to me is that there is nothing between the base rate (£53) and nothing for daily living, and you have to get too many points to get to that.  The result is likely to be that people who would still face very significant expenses associated with their disability will not get anything because they are half-way to the base rate.  E.g. Needing social support to be able to mix with other people gets you four points or needing support to "express or understand complex verbal information" gets you four points.  Or needing assistance to manage toilet needs gets you four points.  Each of these is very significant even on their own but only get you half way to getting any financial support.  Even half of the base rate is £26.50 per week, or £1,378 per year!  That's far from a trivial amount, even ignoring whether it is adequate to cover the above needs.  Are people with this level of need supposed to just find that money themselves?

    I've not looked into the mobility component so much but the threshold to get anything for a physical problem with walking is very low: 200 meters!  My life would be turned upside-down if I couldn't walk ten times that.  I wonder if the people writing the forms just assumed that everybody has a car anyway.

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