DLA beyond 16

[purplegail]

Hi all

 

To any of you with post 16 ASD kids recieving DLA - what happens when they reach 16?

 

Thanks

 

Gail

[Lucas]

I'm 22 and got DLA only last year for mobility and care on the lower bracket.

[bid]

Yes, my son is coming up for 18 and he gets DLA.

 

Post 16 you need to fill in the adult DLA form. You have 3 options: your child can be completely in charge of their DLA (but this means that you can't even speak on the phone to sort out any problems with it, they will only speak to the young person), you can retain complete control, or you have partial control in that the money can be paid to them (you become their Appointee...thank you Kathryn!), but you can still sort out any problems (this is what we did).

 

Bid

Edited March 8, 2007 by bid

[Kathryn]

Hi purplegail,

 

I've moved this into the new Beyond Adolescence forum as I think it fits well here and is a topic that will be useful to others.

 

As DLA was only granted three months before my daughter's 16th birthday, we weren't asked to fill in the adult form, thank goodness. I think in normal circumstances you get the adult form sent automatically to you a few weeks before your child turns 16 - isn't that right Bid? .

 

Bid has mentioned the different options for retaining control: in our case I opted to become L's appointee, which means I can continue to deal with any DLA issues on her behalf until she's willing and able to take over. Becoming an appointee is a fairly straightforward process: you have to weigh up what's best for you in your circumstances.

 

The money continues to be paid into my account by default, but now that L is coming up to 18 I want to gradually let her take greater control over her finances. (My main fear is that she'll blow it all on Amazon but I suppose I'll have to live with it! )

 

K x

Edited March 8, 2007 by Kathryn

[elizabeth8459]

Hi there my sister-in-law gets DLA higher rate personal care and lower rate mobility, as far as im aware you have to fill out an adult DLA form, L also gets income support im not sure what age you apply for that L is 27 and her money gets paid direct into her dads account or she would have no money he gives her pocket money to use week to week.

 

Hope this helps Lizzie x x

[CEJesson]

I receive the lower rate DLA for personal care, and it is an adult form you have to fill in. Its a very long form at that one, but is simple enough to fill in, even if the questions repeat themselves!

[pearl]

We filled it in for J with a letter explaining why we had done so (basically he'd still be doing it now). The money is now in his name but he allows us to use it with the proviso its his once he turns 18, which seems fair enough to us. It runs till he's 21.

[lorryw]

Im my son appointee and it was a very easy process, a chap came from our local social security office and I signed a few forms.

My son recieves DLA at the higher rate for both care and mobility. It was granted for life last year so no more horrible forms to fill!

Lorainex

[Kathryn]

Im my son appointee and it was a very easy process, a chap came from our local social security office and I signed a few forms.

My son recieves DLA at the higher rate for both care and mobility. It was granted for life last year so no more horrible forms to fill!

Lorainex

 

Hi Loraine

 

I didn't know it could be granted for life: what are the criteria for this?

 

K x

[CEJesson]

It does appear to be regulated well enough though, I used to be on the medium rate and am now on the lower.

 

Would criteria such as parents working, child unable to cope with even basic tasks/errands be included?

[lorryw]

Hello Kathryn,

Im not sure what the criteria is for lifetime DLA. I had heard of very young children getting it for life but Im not sure what the circumstances would have to be.

My son is now 21 so perhaps its linked to his age and the probability that his disability is not going to change.

Lorainex

[bid]

I'm dithering about filling in my son's DLA renewal.

 

He will be 18 next month, and has been in receipt of DLA since he was 6.

 

My main problem is that because he was away at residesi and is now nearly 18 he has been discharged from our local CAMHS. His consultant told me that adult services wouldn't take him as he doesn't have severe mental health problems.

 

SO...he has no consultant/specialist to name on the renewal form.

 

Has anyone else been in a similar position? I mean his dx is the same as it has been for the past 18 years!

 

He has made huge progress, so I don't think he will qualify for the mobility element anymore. But he still needs support with things like form-filling, phone calls, cooking.

 

I wouldn't mind if his renewal was turned down, as I do appreciate the progress he has made. But, equally I don't want him to miss anything he might be entitled to just because he no longer has a consultant.

 

Any thoughts, please??

 

Bid

[Kathryn]

Hi Bid,

 

Also dithering around with DLA renewal, and I've been resolutely avoiding the envelope sitting in a dark drawer. We have very similar concerns - L has improved so much and in danger of not getting it renewed - there are days when nobody would tell the difference between her and any of her NT friends. Then there are the other days... If you remember, when I first applied (and how the heck I found the energy to do that in the middle of our statement battles I don't know!) she was functioning at a very low level physically mentally and emotionally, so there was lots to say. Also she was being seen by lots of professionals and on all kinds of meds: now - nothing - so like you we have no professionals to name on the form and no treatment to describe. Her last consutant left the area over a year ago, and she then fell through the gap between children and adult services so nobody has taken her on since. Also she has a fear of doctors and refuses to see anybody - something which isn't taken into account!

 

It strikes me that the bias on this application is towards medical conditions requiring specific treatment and takes less account of the more subtle lifelong conditions.

 

I'm hoping her very sympathetic GP will say the right things if contacted, and I've asked my friend who used to be her occasional carer to fill in the "statement from someone who knows you" bit.

 

Perhaps others can tell us have the experience of getting DLA without naming specialists on the form?

 

K x

[Kazzen161]

I have got T's adult DLA form sitting on my desk, waiting to be filled in. We also have no professionals involved. I suppose I will have to use someone from the college or the connexions person.

 

I have also been sent a form giving me the option to just list what has changed since we last applied (about 3 years ago) - a new pilot form - I can't really see that it would be suitable for me to fill in (it's only 4 A4 sides and his needs are quite complex). Anyone else done one of these?

 

Karen

[barefoot wend]

I have been struggling with my DLA forms for the last few weeks. The new form APPEARS to be relatively straightforward BUT it would be very easy to actually miss out lots of problems we encounter. I've found lots of sections where they want you to tick a YES/NO box and move on (esp with regard to mobility and help at night) - however although Kerre CAN walk a reasonable distance, of course, there are many other factors that come into play that make it nothing like as simple as YES he can walk.

 

I also am struggling with the sections where you need professional input. Last time we had a fantastic private consultant and a hugely helpful SENCo - this time we have a wholly uninterested consultant who knows nothing about Kerre and.............that's it, as Kerre no longer goes to school.

 

I agree with you Kathryn that it is difficult to explain to the DLA that as your child's problems are with communication/social interaction that they actually don't want to see anyone and talk about their problems and because of this will be penalised when it comes to the awarding of DLA.

 

Have made appt, with GP next weeek and shall take form with me to see if I can persuade her to fill out end bit....fingers crossed.....not holding out much hope as Kerre hasn't seen her for ages...

 

Wish everyone luck - and if anyone comes up with a brainwave, give us a shout.

 

Barefoot

[bid]

Awww, thanks guys...at least I know I'm not alone! <'>

 

Lots of us seem to be caught in this 'discharged limbo' without a consultant!

 

Bid

[annie]

We're in exactly the same position, no consultant etc. . DS has also decided that he doesn't have Asperger's, so we decided not to re-apply.

 

Talking to our GP a while ago, he was really angry that as hard as he has tried, there isn't a consultant to take our son on their books, especially after having been under someone since he was 5.........he's 18 in September .

 

Annie

xx

[CEJesson]

Renewing mine was a real pain - as the questions on the form were so repetitive. Furthermore all the addresses had changed and I no longer see my biological father so that all had to be sorted in the form.

 

I didn't have a consultant, and I dont think I had one when I first received DLA about 9 years ago. I think it was a struggle to get one actually.

Edited June 30, 2007 by CEJesson

[Kathryn]

I've tried to involve L in filling in the the renewal application - I'm not sure if that was a good idea or not. Just when her confidence is growing, and we are working so hard to build up her independent skills, she's confronted with questions which highlight all the things she can't do, and that has the opposite effect on her self esteem. It's not good to fill the form in with an optimistic frame of mind as the application will get turned down if not enough boxes are ticked. Aargh! What a dilemma.

 

This supplementary information form is quite helpful in analysing where difficulties lie - I have gone through this with L and she was OK with it.

 

http://www.nas.org.uk/content/1/c4/77/90/D...application.doc

 

 

K x

[barefoot wend]

Kathryn

 

I so agree with you about focussing on the negatives being difficult when filling out the DLA form. I always find it quite demoralising to put it all down in writing - it must be a very negative experience when you're doing it for yourself!

 

I also hate visits to the consultant and GP where they expect you to glibly talk about 'issues' when you do your damndest every day to leave them behind!

 

Annie

 

I agree that provision for over eighteens needs a massive overhaul. It must be frustrating not receiving a benefit that you are entitled to. Hope your son is well.

 

 

Barefoot

[TuX]

Perhaps others can tell us have the experience of getting DLA without naming specialists on the form?

 

K x

am get high rate care and mobility-was awarded it first time,and without specialists names being added,although it was home staff who filled it in for am.

am think if they have any problem,they can contact the gp or pysch,or request a visit to one of their doctors-never happened with am though.

[Kathryn]

am get high rate care and mobility-was awarded it first time,and without specialists names being added,although it was home staff who filled it in for am.

am think if they have any problem,they can contact the gp or pysch,or request a visit to one of their doctors-never happened with am though.

 

That's encouraging to hear, Tux.

 

I filled in and sent off the DLA renewal form eventually, and they wrote to our GP to request a report, as I thought they meight. I've just heard from the GP that she's sent in a very supportive report, so I hope that helps. We're lucky to have a fanastic GP.

 

K x

[CEJesson]

Im not looking forward to changing my DLA from Mum's bank account to my own. Apparently their phone lines are terrible service wise.