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Ds2 has just lost his dla?!?!

5 replies

elliejjtiny · 29/05/2018 15:52

My wheelchair using, ear defender wearing ds2 who has sensory processing disorder and hypermobility, who has had a blue badge from the age of 2, middle rate care from 5 months and high rate mobility from aged 3. He's had a special needs buggy from aged 2 and a wheelchair from 4. Our local playscheme won't take him unless I stay with him because he is too disabled for them to cope with.

Today I've been told over the phone that ds2 who is now 10 is no longer entitled to dla at all. I filled in the renewal forms as usual, sent them off in April, phoned up and nagged them a few times because they were taking their time over it and today they told me that a decision has been made and he's lost the whole lot. I just don't understand. He's not suddenly been cured or even slightly improved. Nothing has changed except he has got bigger so he is more difficult to manage. At least when he was 4 I could pick him up and strap him into a buggy if he went into sensory overload in the middle of the street or suddenly collapsed on the floor. Now he is 10 and we have swapped our nice easily drivable buggy for a nhs wonky shopping trolley style wheelchair. I can't take him out on my own anymore and without his blue badge and motability car i think dh is going to struggle to take him out as well. That wheelchair just isn't made for long distances so we need to be able to park very close to where we are going.

I don't know what to do. I don't know how I'm going to get him to school on Monday. The school have given us a permit to park in the staff car park because of his blue badge, I don't know if we will have to give that up too. Dla and the blue badge was helping him keep some of his freedom and now it's all gone. The person who made the decision isn't in the office today so I have to wait 3-5 days to even find out how on earth they think ds shouldn't get his dla

OP posts:
zzzzz · 29/05/2018 20:38

This reply has been deleted

Message withdrawn at poster's request.

StillMedusa · 29/05/2018 23:59

Appeal.
I think they really have tightened up criteria now..coming more inline with the adult PIP (which is a horror show)

I'm guessing he CAN walk but uses the w/c for distances? (My DD1 has EDS and my DS2 has hypotonia, autism so we are part time chair users in this house ) And I'll hazard a guess that he has an Invacare Blade or similar... yes they are crap chairs but you can still push them a decent distance ..it really won't fall apart that fast.

We have just lost DS2's blue badge... he has had one since he was 2 and he's 21 next week. Part time wheelchair user, wears AFOS on both legs, autistic with learning disabilities, but because he can walk more than 20 yards... no more blue badge from his birthday. AND he does get high rate mobility PIP because he can't plan a journey but his physical disabilities are not enough so no more badge.

The system sucks.

Appeal, but you will need to have good medical evidence (on top of whatever you had before) . The system is changing and not for the better.
PIP is even worse btw!!!!

elliejjtiny · 30/05/2018 02:24

Thankyou. He is a part time chair user, yes and he has an action 3 chair I think it's called so similar to the blade. Good to know it's more reliable than it looks. Do you have any tips for pushing? I find If I push it like a buggy then my arms and shoulders ache. Standing to the side and pushing with one hand is more comfortable but then I can't steer. If they are tightening up the criteria then that makes sense that ds2 has suddenly lost his dla.

I'll be appealing. We see his paediatrician this week so I'll ask her about more medical evidence. We sent in his paediatrician report from last year, the latest report from his vision support teacher and the minutes from his most recent school review meeting. I'm not sure what else we can send in.

OP posts:
Fairylea · 30/05/2018 06:45

To get high rate mobility for a child who can physically walk (even short distances) they have to qualify under either “virtually unable to walk” (which is more specific than it sounds!) or the “severely mentally impaired” rule. If you google either of these as in “dla virtually unable to walk” and the other one you’ll find the criteria’s come up.

This may also be useful- upsanddowns.net/wp-content/uploads/2014/01/dla-contact-a-family.pdf

Fairylea · 30/05/2018 06:49

Also contact Newlife charity about funding a better wheelchair. They funded ds for one and within 2 weeks it was here. Amazing charity. You just need the support of a professional to support your application (we had ds occupational therapist).

newlifecharity.co.uk/docs/care-services/Newlife-Equipment-Grants.shtml

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