A new report commissioned by the Motor Neurone Disease Association investigates the implications of Universal Credit for people living with motor neurone disease (MND).
It finds that the claim process can be difficult for many claimants, and that most claimants living with a terminal illness will be required to meet a work coach to discuss future employment plans.
Universal Credit is a new benefit that rolls six means-tested benefits into one monthly payment for households on low to middle incomes and is available to those both in or out of work, if they have savings of less than £16,000.
Claimants can apply to be fast-tracked for Universal Credit under the Special Rules for Terminal Illness (SRTI) process. The current requirement for this fast track is a ‘reasonable expectation of death within six months’. In practice this forces most claimants with MND to go through the standard process.
Chris James, Director of External Affairs, from the MND Association said: “The standard process for applying for Universal Credit is completely unacceptable for those living with a terminal illness such as MND.
“It is extremely promising to see that the Scottish Government recently voted to change the definition of a terminal illness for claiming benefits. We hope all parties in Westminster will support a change to make access to benefits simpler and faster for people with MND across the rest of the UK.”
Martin Burnell is living with MND and has been frustrated by the whole benefits system, especially around his application for Universal Credit.
He said: “I have come to terms with having MND and not being able to do the job I loved but no one should have to go through what I did. My GP wouldn’t initially fill in a DS1500 form for me which would have meant everything would have been fast tracked.
"I applied for Universal Credit but it took a full year to receive it and after so much time and effort; it was so frustrating. I had assessments from people sat behind a desk who didn’t seem to know what MND was and a total lack of communication between the assessors and those making decisions about my benefits. On one occasion I actually had a fall going to an assessment but because it was outside and by my car, they were not interested.
“It’s awful to be treated like you are not worth anything and feel like you are at the bottom of the pile. I have worked full time and paid my taxes and it is hard enough to live on benefits; it shouldn’t be so hard to prove you have MND and that you are not going to get better.”
* The MND Association is campaigning for change so that all people with MND are able to access benefits under the SRTI process. The #Scrap6Months campaign is here
* Read The implications of Universal Credit for people living with motor neurone disease here
* Motor Neurone Disease Association https://www.mndassociation.org/
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