Anyone else worried about the future of DLA?

[Guest]

Hopefully part of the "review" is gonna take all this into account. There are a lot of debilitating illnesses that aren't covered by the current rules.

[Guest]

Well, lets keep this thread going and hopefully we can support eachother.

[pudge]

I received my VSA carers newsletter today and it was talking about DLA and PIP...i must admit i have had quite a few sleepless nights thinking about this... DS turns 16 in september and the DLA have been in touch saying they will again be in touch in July to sort things out before his birthday...i only work 10 hours a week so that i can be at home for DS when he gets home from school as i really don;t have anyone who could look after him...grandparents help out but i do not like to rely on them all the time...i work term time so that fits in fine but obviously i do not get paid much and the carer's allowance is a pittance too... think i will bury my head in the sand and hope it all goes away... do these people not realise that we have a stressful enough life with out adding to it... all i seem to do nowadays is form filling and repeat my self

[lausan]

Originally Posted by Kim

It's far from perfect as it stands now.

The right people are not getting it and it has been this way for years.

Yet there are people getting it that shouldn't.

All this due to self assesment and those who decide having no medical training.

This is a post I put on here a couple of weeks ago.

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

See more...

My Niece gets hers for life (after a fight) got no problem with the powers that be checking her needs again her condition Spina Bifida Hydrocephalus will not change she cannot walk cannot feel below her chest is in a powered chair,years ago Drs who had never met her would come to Assess her the times they would ask if she could take a few steps so they could see how many steps she could manage without getting breathless(like she was Faking it) she would say i dont get breathless Drs eyes lit up then he would frown as she said because i cannot walk have you read my previous notes she would say... these Drs seemed to treat everyone the same and just wanted to get in and get out who know what extra payment they got.
she only got it for life after her payment was stopped for some unknown reason, i wrote to the Minister for the Disabled and hey presto she got a nice letter and DLA for life

[Guest]

Good for you standing up for you neice. These people don't seem to know their bums from their elbows. I hope they simplify things so at least we can know what's going on.

[Guest]

apps.facebook/causes/post...&user_viewed=1 <-- latest update from facebook group. The goverment are asking for submissions that detail how the changes in DLA would affect YOU. Your statements should be preseted as follows:

Your submission should be attached to your email in a Word document and include:
name, address, telephone number and email address
a short introduction about yourself
the date of submission
a summary of your main points
numbered paragraphs
Your submission should be no longer than 3000 words

Email that to : scrutiny@parliament.uk

Seems a very wordy process, anyone willing to write? Even as a writer, I confess this leaves me daunted. Still, I know how important it is. I'm torn...

I'll try and keep this thread updated with the latest from the FB page for those who haven't brave the heady heights of facebook yet.

[Guest]

Worring as such changes are, I hope it weeds out the frauds. I personally know people who receive the full rate of mobility and care and can walk miles, decorate their house, do the garden, and have jobs on the side.

And yes, people have tried to report them. (Not me. I would, but I've been told it's useless, because the authorities are only interested in the "Big Fish". And that was from a member of DWP staff.)

[wintersun]

DD was sent forms to complete for DGD, completed forms returned with a lot of information. They then sent other forms as they said her circumstances had changed and that they had contacted her doctors. We have found out that they did not contact DGD doctors. Forms now sent back and we await the outcome.

[Guest]

im scared of this as ds has a undx condition and no one knows if will improove or not and we have to keep getting it renewed yearly .And becuase it is undx everything is a fight.

Yet have had big trouble trying to get referals so specialists as community paed keeps wanting to wait and see .Ds is nearly6 and they been saying that for 4 years we do get physio/ot input 4 times a year and his afos but thats it

[DIBBadmin]

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