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Myotonic Dystropy points
kimknight24
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.
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
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 !!
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.
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.
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 !
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.