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Myotonic Dystropy points

kimknight24kimknight24 Member Posts: 6 Listener
my son recently applied to have his pip allowance highered to include high rate mobility allowance.
he is now in his 30s and his Myotonic Dystophy has deteriorated so much that he now struggles to change the gear from drive to reverse I. The automatic car I bought him 3 years ago. He needs an adapted car I order to maintain his independence.
his mobility is now limited so much so that he can no longer shave himself or cook a meal due to restricted movement in his shoulders and inability to hold anything up to his face or carrying anything in his hands which weighs heavy or is hot due to the myotonia, 
without a car he is going to lose his independence.
I have appealed and I am just waiting for all his medical records to come through, but I am open to any advice please.

Replies

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    HI,

    For the mobility part of PIP it's about how far you can walk and not whether you can cook, shave or change gear in a car. Your shoulders won't affect how you walk. For an Enhanced mobility in the moving around part....

    Can stand and then move more than 1 metre but
    no more than 20 metres, either aided or unaided.

    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • wilkowilko Member Posts: 2,267 Disability Gamechanger
    It will be great for your son to have a new easier to drive car, saying that if your son is having difficulties in holding things and and now has restricted movement in his shoulders his he going to be safe driving, without his abilities to move his body easily or quickly enough to respond to different driving conditions. Maybe your son should consult with the DVLA regarding his deteriorating health condition regarding his abilities to hold things and shoulder movements may disqualify him from driving and should he continue to drive without seeking getting advicemay and will invalidate his insurance.
  • kimknight24kimknight24 Member Posts: 6 Listener
    I know other Myotoniic and muscular dystrophy drivers who have similar and sometimes worse conditions and with the right adaptions to a car he will be perfectly fine. It isn’t that he can’t do it, it is awkward and he would benefit from Cameras and controls on the steering wheel to make it easiier. I thought the whole point of PIP was to maintain independence!
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    I know other Myotoniic and muscular dystrophy drivers who have similar and sometimes worse conditions and with the right adaptions to a car he will be perfectly fine. It isn’t that he can’t do it, it is awkward and he would benefit from Cameras and controls on the steering wheel to make it easiier. I thought the whole point of PIP was to maintain independence!
    Yes, it's to maintain independence but not being able to drive because you can't change gear or because of your shoulders won't get you enhanced mobility.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • kimknight24kimknight24 Member Posts: 6 Listener
    Really so I know people who get full mobility and DONT NEED  ADAPTED CAR and can actually walk better then I do !! So it’s a joke then isn’t it!!
    so what your saying is I have to get a loan to pay for my sons car adaptions !!! To maintain his independence !!
    Its disgusting !its like all benefits, just benefits the crooks who know their way around them !! 
  • atlas46atlas46 Community champion Posts: 827 Pioneering
    Hi @kimknight24

    Very nice to meet you and sorry to learn about your son.

    You need to seek advice from the Regional Driving Assessment Centre (RDAC) on tel: 0300 300 2240.

    They will be able to undertake a driving assessment and provide advice on adaptions that might be needed.

    You can apply for grants for these adaptions from motability the charity.

    You could also speak to the Drivers Medical Group, part of DVLA, contrary to popular believe, they are very supportive of disabled drivers.

    Once you get PIP Enhanced mobility for you son, you should know what adaptions he needs and the grant funding for them?

    I have just assisted a friend go through this process, following his stroke.

    Hope this helps.

    Keep us informed.


  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Yes, you're correct. There are people that claim Enhanced mobility for PIP that can walk perfectly fine. My daughter is one of them. There's also another mobility descriptor for following and planning a journey and there's people out there that are unable to go out alone, my daughter is one of them. She scored 12 points in this descriptor and is eligible for the mobility car if she wishes. She doesn't drive so therefore doesn't need the car.

    Please don't judge a book by it's cover. Just because a person can walk perfectly well it doesn't mean to say there's nothing wrong with them. Invisible conditions do exist.

    Does your son currently have Enhanced mobility award or are you appealing a decision because of no award? Sorry but having just re-read your post it's not clear, if you're asking about the mobility part or adaptions to a car.

    As for crooks claiming benefits, there's very few people that claim benefits fraudulently.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • YadnadYadnad Member [under moderation] Posts: 2,856 Member [under moderation]
    so what your saying is I have to get a loan to pay for my sons car adaptions !!! To maintain his independence !!
    Given that it is well known that the number of people over 65 is on the increase, they too have this same problem. They cannot make a new claim for the lack of mobility. It is expected that because of their age the lack of mobility is part of being older and not down to any disability even if they actually have a disability.

    Consequently anybody over 65 that finds that they need an adapted car they have no choice but to fund not just the car but all of the adaptions themselves.
     
  • kimknight24kimknight24 Member Posts: 6 Listener
    My son has never claimed anything before, accept ESA I have paid for everything and now I’m skint !
    i have nothing left cause I have 2 sons with this hideous condition.
    My son scored 11point 
    but should have scored more fir the care anyway so I am going g to appeal or he will have to just stay at home. I have no money left !
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    What stage are you at ?
    Have you asked for a copy of the assessment report
    Have you requested an MR ?
    Are you now appealing to the tribunal ?

    It is always advisable to get trained advice from CAB, Welfare rights or similar when appealing a decision.

    The descriptors are pretty much set in stone, so you need to show how and why you meet the criteria
    Be all you can be, make  every day count. Namaste
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    You need to give at least 2/3 examples of what happened the last time he did that activity.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • kimknight24kimknight24 Member Posts: 6 Listener
    They are  DM1 and I am awaiting all the doctors records 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Sorry but what is DM1?
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • cristobalcristobal Member Posts: 966 Disability Gamechanger

    As others have pointed out ‘Mobility’ is covered under Activity 11 (planning and following a journey) and Activity 12 (moving around). It does not cover driving.

    If I were you I would look at the descriptors, study them closely and discuss with your son to see which applies. There’s a link here:-

    http://https//www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria

    In one of your posts about your son changing gear you say,“It isn’t that he can’t do it, it is awkward.” 

    We’ve established now that this isn’t relevant to PIP but, in any event, I’d avoid using phrases like this. PIP is about whether you can do tasks unaided, or whether you need aids or assistance to be able to complete them. It excludes using aids to make it easier, if you don’t actually need it. There’s a worked example under’Managing toilet needs’, in the assessment guide, which is very helpful.

    Good luck. I hope things turn out well.

  • kimknight24kimknight24 Member Posts: 6 Listener
    Hi That link isn’t working ? 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
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