If you have a child with GDD and claim DLA for them could you have a look here please.

[mehgalegs]

DS4 is 3. He has GDD with hypotonia and hypermobility. He has been walking since Jan.

He has been receiving the middle rate for care for about two years and when he turned 3 in June we applied for mobility.

Well, we heard today that he got it and being 3 he gets it at the higher rate.

Dh and I have been chatting though and we feel quite guilty. Since I filled in the claim form at the end of July he has made considerable progress physically and gone from only being able to walk a very short distance with a lot of falling over to being quite active. He can now run (well walk very fast with his arms swinging) and jump a little bit. He is also much better at slopes and steps and he is able to climb (with a "catcher" standing ready). He still tires very easily but he is not in discomfort.

However, he still does not have the mental ability to perceive danger so he needs constant vigilance when out, but then doesn't every 3 year old? He can't speak so if he was lost (again another concept that is beyond him)he couldn't communicate. Basically the paragraph in the letter from the DWP that states that he requires substanially greater supervision than a child the same age who is NT is correct but the section about his walking and getting about is already out of date.

Should I contact the DWP and tell them the circumstances have changed already? Or does the fact that he needs constant supervision and guidance qualify him IYO?

I don't know about GDD but....
does he still require substanially greater supervision than a child the same age who is NT ?
if so I would leave it.

He would now qualify for lower rate but not higher.

I would probably report it if you think this progress will continue and he's unlikely to regress.

NOoooo !!! Don't contact them, just be really pleased you've got it. When you come to renew put all the upto date info then.

My daughter has GDD and we get middle rate care and low rate mobility. I think we would have a reasonable case for high rate but we don't feel able to face an appeal as we have all that going on with school.

2shoes - it's weird but I can't remember the other three at his age. He is 3 1/2 but intellectually he is at an 18 - 20 month level.

We use the pushchair less but, on the school run for instance I have to cling to him until we reach the footpath across the field. He then walks along but I have to constantly turn him in the right direction, cajol, call and encourage, if it's raining and there are puddles forget it, it takes a lot of effort to get hil out of a puddle. A short two minute walk takes 15 - 20 mins on a good day.

When I compare him to his peers he seems way behind. You could tell the average 3 1/2 year old not to run in the road, I know some still do it, but DS4 would have absolutely no concept that a vehicle would be on the road, he would just see it as another place to walk.

gmsogmc - I thought you could only get the higher or nothing at all at age 3 and then lower or higher at age 5. Have I misunderstood.

Any other thoughts? I guess I thought of mobility as difficulties in getting around which I realise many of you deal with on a major scale. DS4's problems with getting around stem from his inability to understand what's going on around him and his lack of any sense of danger.

No don't contact them! If a short walk is taking 15-20 mins that that IS substantially greater supervision. Your DS has obviously come on leaps and bounds (well done DS!) but it sounds to me like he still requires alot of input from you (compared to other three year olds) so accept it and be guilt free!

AWW - that's kind. He has made great progress and hopefully he'll continue to do so.

That has made me feel better. He certainly needs a lot of input.

I agree, don't contact them. My DS age 7 gets middle rate care and lower rate mobility because of his ASD and no awareness of danger etc, but i know other families with ASD kids who get higher rate mobility and they can walk, run, jump......you can qualify for higher rate even if walking isn't the problem.

I would echo what some others have said. If his gross motor skills were assessed they'd probably still fall far short of what an NT child would be able to do at his age. And anyway, I think it's the no awareness of danger that makes the rate appropriate. DD's NT friends of 2 already know to stop when called (most of the time) and can easily distinguish between pavement (safe) and road (not safe). Most of them are even on little scooters. DD thinks scooters are for pushing along (the wrong way round) and the handlebars are for chewing!

Mehgalegs, you are right you can only get high rate mobility at 3, it's 5 for low rate. As others have said, it's about awareness as much physical ability to walk. At our school gate, the 2/3 year olds are mostly allowed to walk without holding hands (from home), run around the playground with their friends talking to each other, mostly stop when told and understand the difference between the pavement and the road. Depresses the hell out of me, dd3 is still firmly in her pushchair

dd has gdd, hypotonia and hypermobility and we have always got higher rate care and mobility. She has been able to walk since she was 24 months old. They look at physiop records and ask your paed for input. I am pretty sure it would be right

My DD1 (nearly 4) has GDD and gets high rate care and mobility. Whilst she can walk quite a long way now on the flat, if she didn't hold my hand she would sit down, wander off into traffic and quite possibly stumble off the pavement. She has no perception of danger at all and tires easily.
Howver we felt guilty when we received the DLA as we too felt she had made huge progress in the six months it took to apply. However I keep thinking to her peers and she cannot do what they can do. They do not get tired, they do not sit down randomly in the street, they listen to parents instructions and they can walk on apavement safetly without holding onto an adult.
It can be quite an emotional shock to receive benefits when you are not used to claiming anything for your adult life and it certainly took us a good few months to acknowledge that we did deserve some recognition for the caring we do And if the system deems its financial, then so be it. Its not compensation but it helps pay the petrol to get her to the hospital appointments. Personally I'd swap all DD1's benefits for her to be able to talk and jump and run.

cktwo - me too .

Your DD sounds similar to my DS. On school run today he walked a little, I didn't get the pushchair out as he has had a snooze but a minute into walking he is signing to be carried.

I also think others' perceptions come into this. Because DD can walk, it's assumed by other mums in the playground that all her other abilities are equally well developed. But the ability to walk coupled with the cognitive skills of a non-walking child actually make her MORE disabled IMO. As has been pointed out below, NT kids don't (100% of the time) attempt to escape through the nearest open gate, sit randomly, hold onto the side of a bus or chew scooters!

By Arabica on Tue 21-Oct-08 16:10:42

"But the ability to walk coupled with the cognitive skills of a non-walking child"

That is a perfect description of DS4.

cktwo - you are also right about the emotional aspect.. I see more of DS4's SN world as I take him to all his appointments and theraplay etc. It hasn't come as such a shock to me. DH sees him as the tearaway happy three year old he is at home so it might be harder for him to cope with the fact that he needs the mobility payment.

I think it's really hard on some of the Dads. I too am the one doing the appointments and seeing DD1 around other three year olds at playgroups etc who are miles ahead of her in development terms. Poor old DH doesn't see all that so its been hard for him to grasp as quickly as I have how disabled she really is. And this all adds to the guilt factor when receiving such benefits.