DLA moan!

[lozzer31]

Hiya folks
Sorry but i'm just having a moan and a bit of a panic.
Where do the government get off making us parents of disabled children go through more stress by reducing everyone's DLA meaning they have to go through a lengthy stressful appeals procedure, Don't they think we got enough to deal with!
Just come back from a weekend away with a group my son is involved with and i'm now panicking about my sons DLA renewal. I've heard at least 3 stories (from 10 families) of children that have had high rate DLA since birth that have had it reduced to low or middle rate. Someone with prada wili syndrome had high from birth now 13 been reduced to low! Even a pair of twins with exact same disabilities, forms filled in exactly same etc... 1 got high rate other got middle!
We are waiting to hear about my sons recent reclaim and i'm just thinking with my luck recently his will be reduced.
I think someone from DLA should live with our kids on their own for a week and then tell us they don't qualify!
Sorry for the rant and if you're still reading thanks for listening.

[Guest]

Originally Posted by lozzer31

I think someone from DLA should live with our kids on their own for a week and then tell us they don't qualify!

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Excellent idea when we first applied for DLA for DS we were refused on the grounds that he could make his own meals He has quadriplegic CP and can't even hold a knife and fork. I wrote to the DWP head and invited him to dinner saying that DS would cook. He never acknowledged the application but it was 'looked at again' and he was awarded the higher rate.

I'm sure relatively few disabled kids actually improve as they get older so this is a pointless exercise.

[jemett]

The whole thing is very confusing and I've been trying not to get myself worked up about it. Teddys DLA award doesn't have to be renewed until 2013 and it's a worry what we will have to go through in order to receive DLA, it's like we have to prove the difficulties our children have. Surely it's discrimination!

[pudge]

We are about to get ours looked at again as DS will be 16 in september...when we first applied back when he was 4 we were refused on the grounds that he was roughly the same as another 4 year old...our consultant wrote to them again and explained all about Fragile X and said that he would never get better from this..this is a genetic condition and things will only get worse for us as parents..we then got awarded the middle rate...however i am not looking forward to the process as we are also getting things set up for medical/welfare/financial guardianship at the same time... not much wonder i have cold sores and am absolutely exhausted!

[Kim]

Originally Posted by loadsapixiedust

Excellent idea when we first applied for DLA for DS we were refused on the grounds that he could make his own meals

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Shocking, but I can believe it of DLA

This is our son Adam


He was born with a large hole at the top of his head and 7 tumours hanging out. They operated on him at Birmingham’s Children’s Hospital when he was 2 days old, to remove the tumours and sew the hole up. From the start we knew he would severely brain damaged.
It also came to light pretty soon after... that he had other disabilities.

These are

Spina Bifida
Hydrocephalus
Scoliosis
Epilepsy

He is now 26 and has the mental age of a toddler.

It took us till the age of 11 to get any form of DLA for him as they said his condition was only temporary.

It was only 18 months ago that he was awarded it for life. This was after they had written to our GP for the first time to ask anything and he got the award in a week.
The whole system need looking into and overhauling.

Kim

[Anne K]

I've just reapplied for Adam's. He's 15 in April, so it will have to be done again in a year when he's 16 and applying for himself. IIRC this last award was for 5 years.

Adam's condition is also genetic, not curable and is untreatable, so it's never going to go away.

It is the most tedious, depressing form ever. I do copy the pages and use to complete the next one, but they change some of the questions, so can't always directly copy from the past forms.

Given what's in the OP, let's see if they keep his award the same for this final year (middle rate care and lower rate mobility).

[Melonz]

My daughter was 16 in December so we had to reapply as an adult. Luckily for us we were awarded the same rate which is high care and low mobility. It is a worry and we got enough on our plates as it is. I think when the new system comes into effect i reckon a lot of our kids will be worse off. Let's face it they're not changing it for our benefit are they!

[Saratoska]

my son was awarded the higher rate for life but was lucky if that is the right word to start working part time for his dad. he can only work for him as he needs 24/7 care, he is quadraplegic, broken neck and more, with his dad or carer there he can do this. got a letter to say now he was working please find the enclosed application for DLA phoned and wrote a letter saying nothing had changed in my sons conditons he still cannot move, feed himself and a whole lot more. got a letter back saying it would continue but it was the worry inbetween.

ds2 had to reapply re his as he is now over 18 he is deaf, gets the lower rate of the attendance part, I was 99% sure I had kept a copy of the last dla form but could I find it. again he is not going to ever get better. so had to sit and fill it all in from scratch. you actually feel quite depressed afterwards when you see written down what they cannot do
I dont think I could face going to an appeal, no energy left

[Guest]

the whole system disgusts me, how some people abuse it and know how to work the system seem to get away with it scott free, and the genuine cases have to fight tooth and nail for what they are genuinely entitled to, and it doesn't surprise me that no-one took up the offer of a meal cooked by your DS loadsapixiedust, but I bet if there were a film crew wanting to do a fly on the wall documentary it would have been a different story.

Grrrrrrr...

[Guest]

Originally Posted by Kim

Shocking, but I can believe it of DLA

This is our son Adam


He was born with a large hole at the top of his head and 7 tumours hanging out. They operated on him at Birmingham’s Children’s Hospital when he was 2 days old, to remove the tumours and sew the hole up. From the start we knew he would severely brain damaged.
It also came to light pretty soon after... that he had other disabilities.

These are

Spina Bifida
Hydrocephalus
Scoliosis
Epilepsy

He is now 26 and has the mental age of a toddler.

It took us till the age of 11 to get any form of DLA for him as they said his condition was only temporary.

It was only 18 months ago that he was awarded it for life. This was after they had written to our GP for the first time to ask anything and he got the award in a week.
The whole system need looking into and overhauling.

Kim

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that is shocking. Have you considered making a complaint to gain backdated funds?