DLA Continued,..

[mossgrove]

Kathryn

 

Good luck with the forms.

 

Best advice we were given was, remember you are NOT trying to give a balanced assessment of youir childs strengths and weaknesses, you are highlighting needs that you want help with, so think of the worst day you have ever had with your daughter and then exaggerate a little!

 

It's not pleasant, but it is worth it.

 

Simon

[lisa]

Is it just me or has the whole world gone mad?

 

We got a letter today refusing DLA for Laura. The reason stated was that she doesn't require any more care than another child of her age!! I telephoned them and said that she has autism, of course she needs more care!! The thing I can't understand is that I filled the forms in almost the same as for my son the only difference being that she has the additional problems of bedwetting and daytime wetting as well. My son receives the higher rate of care!

 

I feel I can't cope with too much more of this. Laura is further along the spectrum than Jack and experiencing more severe problems yet she's been turned down for statutory assessment and DLA whereas Jack has a statement and DLA. It just doesn't make sense. I've asked them to reconsider their decision but I'm so stressed about the LEA's refusal to assess and preparing for tribunal at the moment that I don't know if I have the energy to appeal against DLA as well.

 

I just can't believe all this is happening, Laura is like the child from hell at the moment with all the christmas stuff going on at school, Jack's not much better as on top of christmas his LSA is leaving and we're trying to prepare him for a new one. It was 1.30am before I got them both to sleep last night. I feel like I'm going to have a nervous breakdown. I can't eat or sleep for worrying.

 

I can't take much more of this.

 

Lisa

[nellie]

I?m so sorry Lisa, you sound so down. <'>

 

I don?t think it?s just you, I do believe parents are having to fight harder.

 

I really feel for you, this is not fair. It was bad enough being refused statutory assessment but this refusal on top, is so unjust. Apart from appealing I don?t know what to suggest, is there someone who could help you with the DLA appeal? Maybe Mencap or the Citizens Advice Bureaux or maybe a local autistic society.

 

I hope you are feeling a bit better today.

 

Take care

 

Nellie <'>

[bid]

Oh Lisa <'> <'>

 

When we had my son's DLA taken away (long story involving well-meaning social worker and miserable old witch of a Head Teacher...) I appealed.

 

I got every professional I could think of to write in my support, and we did get it back, at the higher rate of personal care, too.

 

This was many years ago, but it would be worth asking for this sort of help. I got letters from the Special Needs Health Visitor and his Consultant. I also got the Head to write a letter 'qualifying' what she had said

 

Do you know if your daughter's school was approached? Our problem was that my son's school was sent a form, and because he is passive at school, the Head filled it in as though he was perfectly OK

 

Good luck...I know how devastating these things are. You have to wonder how some of these people sleep at night...

 

Kindest regards,

 

Bid

[lisa]

Thanks Nellie and Bid,

 

I've asked for a reconsideration of the decision. When I telephoned them, there was no information about who had been contacted for information and the reason for refusal was brief, namely "doesn't require more care than another child of her age". If they asked the school in our case then that would probably be the reason why we were refused.

 

According to this letter I have one month to put in an appeal form which I have to get from the local social security office, I don't even know where that is! The date on the letter says 1st Dec, I didn't receive the letter until yesterday so that's almost a week gone and the form has to be in by 1st Jan. I'm never going to be able to organise letters from professionals before christmas to get this sorted. I have to have Laura's case prepared and sent in for the tribunal by 26th January. I can't cope with both at the moment and christmas.

 

I know I shouldn't but I feel embarrassed to tell anyone including professionals that we're trying to claim DLA for Laura, particularly as she was only diagnosed in August. I don't want them to think that we only went for a diagnosis so that we could claim money for her. As someone else mentioned before in a posting on this site, we also had someone agressively question why we should be entitled to claim DLA for Jack and it's made me a bit wary.

 

Lisa

[tess]

hi lisa i am so sorry that you are having such a bad time right now , but you have to keep fighting.

I was turned down for DLA. I found out who my MP was and phoned his secretary.i was in a real state, i told her my story and she arranged for him to phone me, he came to see me and we now have been awarded DLA at higher rate care and low mobility.

 

Dont give up your child is entitled to this and you have evry right to fight for it.

 

Take care

 

tess xx

[bid]

Lisa <'>

 

You have absolutely every right to get DLA for both your children!!

 

If children like ours were in care or had to be fostered because we couldn't look after them, it would cost the tax payer far more than the DLA and Carers that we get!!

 

If you look at the fees for specialist ASD schools they are huge, and a good proportion of that is the care element...again, far more than we get, I bet!!

 

Someone else on the forum said the government get off lightly considering the level of care we give our children...absolutely true!

 

As for people who question us...just let them take over for an hour, never mind 24/7

 

Rant over!

 

Don't let ignorant people get you down...you are doing a brilliant job!

 

Bid

 

I wonder if you can get an extention for the DLA appeal?

[smallworld]

Hi Lisa,

You could apply for an extension on the grounds that a lot of the professionals from whom you will need evidence will no doubt be on holiday for much of the time you have left. Unlike us parents !

Those same professionals who should have been suggesting that you claim DLA and carers allowance. I missed out on these for 3 months until another parent put me right.

Don't feel embarrassed, just think of all those people who say, well meaningly " I don't know how you cope " !!

or just tell em to mind their own business !! or something similar,

Good luck

 

wac.

[nellie]

Lisa <'>

 

Not sure if this is any help, but I have found a link to the GL24 'If you think our decision is wrong' which has an appeals form on the back.

http://www.dwp.gov.uk/publications/dwp/2004/gl24_apr.pdf

 

I agree with the others, you have a right to this money. Carers save the economy �57 billion a year.

 

I know it takes a lot of energy to fight these things, but you may regret it later if you don't take some action.

 

Nellie. xx

[lisa]

Thanks everyone for your support.

 

You're right, I'm just a bit down at the moment. I need to get my fight back, I think I'll contact my MP with the whole sorry situation of DLA and assessment refusal and see what he can do. I'm also going to talk to the school and get a letter from them. I think if the SENCO challanges it I'll completely lose my top and demand to see the head. She told the LEA that Laura "seemed fine to her"

 

Nellie, you are fantastic. Thank you so much for the link to the GL24 form.

 

Lisa

[billie]

Hi, I'm new to the site - my 10 year old daughter has refered onto a special clinic as she has 'social communication problems (??? Aspergers), Features of ADHD & Dyspraxic tendencies'.

Reading all the messages about DLA makes me determined to take my time over filling in the forms & to keep my fingers crossed!

Thanks & good luck to those trying to get it!

[Amanda32]

Hi Billie

If it's anything you needed to know off any of the member's just ask away. They have all helped me out alot even if it's just a quick chat. When you fill the forms out make sure you write down the bad days so they will understand what it's like for you. I know the forms are long but try not to let it stress you out.

Take care

Amanda <'> <'>

[lisa]

I spoke to a lady from Welfare Rights today about DLA. As you may remember we've just been refused DLA for Laura but we've asked for them to reconsider.

 

When I telephoned the DLA to ask the reason for refusal they didn't have on the computer who they'd asked for advice but the lady from Welfare Rights told me they have to tell me and it's not good enough to say "it's not on the computer". She advised me to telephone them back and ask them to send me a copy of all the information they used to make their decision. When I phoned them again they went to have a look and it turns out they didn't actually ask anyone else for advice, they just used my form. I'm so annoyed. I supplied them with the addresses and telephone numbers for SALT, EP, Consultant, GP, School and even our local NAS group chairperson who's become a really good friend over the past 18 months. Also I can't believe after reading my form how they could turn her down. A lady from MENCAP helped fill it in and she knew exactly what they would be looking for. She helped with my son's and he got high rate care.

 

I have to telephone the lady from Welfare Rights again tomorrow. She feels that Laura should be entitled to DLA so they're going to step in and help.

 

I feel more positive now about claiming and hopeful that we'll get there in the end. The time pressure for appealing is also off because DLA are reconsidering their decision. Apparently they don't often change their minds about a decision so we'll probably have to appeal eventually but at least we have Welfare Rights on our side to help with the appeal.

 

Welfare Rights are doing campaigning in our area to let parents know that if their child has a statement they are entitled to claim DLA. I don't think many parents know. My sister definitely didn't until I told her this year and her son, who's now 14 has had a statement and full 1:1 help since starting school. He's been going to a special school since he was 7 and not once did any professional tell her. She now gets DLA, carers and a blue badge.

 

Lisa

[nellie]

Lisa

 

Almost missed this posting.

This is great news. I'm sure you will get there in the end.

 

Nellie xx

[Kathryn]

Good luck, Lisa. I hope you get somewhere with this soon.

 

Just posted to say I finally finished the application last night at 2 am having put it off for ages, and it's posted off now so that's one thing off my "to do" list.

 

The final impetus was a letter saying if I didn't post part 2 withinn 2 weeks it would be referred to the Decision Maker (whoever that is I can picture him now, some venerable Gandalf figure sitting on his throne...).

 

What a marathon. I think they should give you the money just for thinking of answers to all those stupid questions.

 

K

[Kazzen161]

I finally found out what T has been awarded - middle care and low mobility, which is fine. They said they only used my form for evidence, so I must have done it OK.

 

Karen

[lisa]

The ongoing saga of Laura's DLA.......

 

A lady from MENCAP came to see me today to help with Laura's DLA claim. I showed her the photocopy of my claim pack and she was amazed that we'd been turned down for DLA. She read through Laura's reports and chose a couple for me to send in as supporting evidence. She's feels we have an excellent case for them to change their decision. Fingers crossed.

 

Lisa

[lisa]

I've just found out why DLA refused Laura. I asked for a copy of all the evidence they used to make their decision and they'd asked the school. I'm absolutely disgusted with the SENCO. These are the answers she gave to the questions.

 

Speech/language - Normal

Communication - Normal

Academic - Normal

Any extra provisions:- She left this blank even though Laura has a termly SALT program, social skills group, IEP, ASD outreach visits, "offload" teacher time, is on School Action Plus and has home/school liaison book.

 

Is the child aware of common dangers as appropriate to their age?

She answered yes which I totally disagree with.

 

Does the child have any dangerous tendencies or behaviour problems?

She answered no even though she has referred Laura to the behaviour management team and is aware that we're having real problems with her behaviour and that she's been self harming.

 

Does the child have any supervision needs not appropriate to their age?

She again answered no.

 

Does the child have road safety awareness appropriate to their age?

She answered "Fine on school trips."

This is unacceptable. Laura has absolutely no road sense whatsoever!

 

Please add any further details which you think would be helpful to the Department when deciding on this claim.

 

She answered - We do not consider this child has a severe disability.

 

 

I am absolutely furious. Unfortunately all the services are closed now for Christmas but I've left messages for MENCAP, Welfare Rights and Parent Partnership to call me. I will make an appointment to see the Head Teacher on the first day of term to sort this out, I'm not going to let her get away with this. I want a letter from the school to the DLA explaining that this reply was inaccurate and the true information supplied. If anyone could offer any further advice about this I'd be really grateful.

 

Lisa

[Helen]

Well, it isn't any wonder why you were refused DLA, based on the information that the Senco provided

 

I think you ought to provide your contradictory evidence to the DLA appeal board to prove that the Senco really doesn't understand the extent of your daughter's problems.

[Kathryn]

Lisa,

 

This is outrageous. I can't offer any advice but I just wanted to express my sympathy and anger on your behalf

 

A pity it has to wait until next term to be sorted out, but try not to let it put a dampener on your Christmas (easier said than done ). You will get it in the end, I'm sure.

[nellie]

Lisa,

 

I agree, this is totally outrageous!!! Thinking aloud..... maybe the same thing has happened with the Statutory Assessment.

 

Nellie xx

[lisa]

Thanks everyone,

 

Nellie, you're right. The SENCO was doing her upmost to block the statutory assessment. I think she doesn't agree with AS. She tried to contradict all the professional advice I have to the LEA officer in a recent meeting and has been really unhelpful with both my children. I know she has upset a friend of mine who has two children with Aspergers in the same school. She's doing the same to her. My friends youngest has also just been turned down for statutory assessment. This is the same woman I had all the trouble with last year when she refused to accept that Jack had AS and announced he was "just a slow learner" and that he can't have AS because he has a friend!

 

I'm annoyed that DLA only asked the school when on the form in the section where it said "who do you want us to contact..." I wrote the SALT with telephone number and address. I don't think they should be allowed to turn down a claim like this if they have conflicting advice from two sources. They should ask for more evidence from someone else. Why ask you for all the names and addresses if they're not going to bother to contact them?

 

MENCAP read Laura's reports earlier this week and chose two for me to send in. I'm going to send those in with a covering letter explaining that I'm very suprised at the school's evidence and can only assume they have mixed her up with another child and provide details of all the input she has through school. Is this a bad idea? I could also say that I'm be going in at the start of term to find out what's happened.

 

Does anyone know if I can insist that DLA also contact some of the other professionals involved? If they'd contacted anyone else I'm sure she would have been awarded it.

 

Lisa

[nellie]

Lisa,

 

It?s a long time since I claimed DLA so I?m afraid I can?t advise you, hopefully someone else can. I would find it very odd if you couldn?t insist they seek evidence from other sources.

 

I think I would take advice about the SENCO from IPSEA, NAS or ACE. I don?t blame you for being angry. I would be livid. It would help if you can prove her wrong, you would then be able to make a complaint to the LEA and the governing body.

 

Sorry Lisa, I hope you get it sorted out soon.

 

Nellie <'>

[lisa]

Hi all,

 

I've sent in a four page letter to the DWP with copies of some of Laura's reports. I decided in the end to write saying that I felt the school form had been filled in vindictively due to a personality clash. I went through every question numbered with reasons why I thought the information was inaccurate. Hopefully I made a good case and was able to provide contradictary evidence for all the questions. I enclosed a list of eight different professionals names, addresses and telephone numbers who've been involved with Laura for them to contact for further information if necessary. I also put our local NAS group chairperson and my sister for evidence of how she behaves generally out of school.

 

I do feel better now this is done. I think we have a good case for appeal if they don't change their decision in the reconsideration stage. I'm sure we'll get there in the end and by the time I've finished with this SENCO hopefully she'll think twice before doing this to anyone else.

 

I've done all I can for now so it's just a matter of waiting to hear what they decide.

 

Lisa

[lisa]

Good News!!

 

I've just received a letter from DWP and they've changed their decision. They've awarded Laura DLA higher rate care and low mobility and they're going to back date it from September.

 

I'm so relieved. One less thing to worry about.

 

Lisa

[nellie]

That's wonderful news Lisa,

 

Well done.

 

I'm really pleased for you.

 

Nellie xx

[Joe's gran]

Great news Lisa. I am sure your battle will prove an inspiration to others. Well done!

Love Joe's gran

[lorryw]

Well done Lisa,

I have had major tussles with the DLA in the past. Several years ago I watched a television programme featuring 3 families with autistic children. One of the little lads was exactly like my son and the mother mentioned they recieved higher rate mobility. I decided to reapply to the DLA for higher limit mobility which was rejected. I appealed and was rejected again and chose to go to tribunial.

On the day of the tribunial I was a nervous wreck but it was worth it. I was greeted by an usher who said cheerily not to worry because I wouldnt be long. The appeal panel apologised and admitted they were shocked that the DLA had chosen to let the situation go to these lengths. Smiles and hand shakes all round and the benefit was backdated for 2 years, from the first time I had applied and been refused.

If at first you dont suceed........

[Helen]

Congratulations Lisa!

 

What a big turn-around!!!

Edited January 15, 2005 by Helen

[lynyona]

well i actually got the decision from dla today, has i asked them to reassess my claim as when they re awarded it they dropped kieran from middle care to low care , hence i also lost my carers allowance for him.They said politely as in their usual standard manner,that after looking at the information i have submitted to them their dedecision stands on their original award.I can appeal if i want to within a month of the date of the letter,but as i have heard of cases of appeal losing the benefit altogether i wonder if it is worth the trouble. lynn

[Amanda32]

Hi everyone...

After my son diagnosis I filled out another form for DLA as new change of circumstances. I rang them earlier to find out what decision was made and they said they sent it out the start of dec but not received anything so they are doing another one again. I did say to them on the phone what was decided and they said no change I still get Middle rate Care, Low mobility so not that bothered really. If I tried to appeal I may lose all of it so leave it as that I think.

Take care

Amanda <'> <'>

[ksasnic]

Not sure whether I mentioned it, but after I was rejected dla for Nick I asked for a review of our case adding leaflets all about AS and underlined certain key points so they looked over our file again and this time awarded it and even included lower rate mobility which was a blessing as he is a right pain to go shopping with...lol

 

All I can say is choose the best leaflets that cover your childrens problems. At least then they can quickly read through the leaflets and hopefully have a better understanding to then see where we are coming from.. Its worth a shot..

 

Good luck to all who are still going through the minefield..

[Kathryn]

Just to say we had a doctor's visit today re our DLA application. He basically asked me all the same questions I had already answered in detail on the form- and took my daughter's blood pressure. He was very sympathetic and understanding and didn't want to upset her.

 

It sounds awful, but I was relieved that she was having a bad day and a lot of what I had described on the form was immediately obvious. In fact she has deteriorated since I filled the form in a few months ago and he noted that down.

 

I hope we get it.

[loulou]

Hi Kathryn,

 

I'm glad it went ok with the Doctor. I don't know about you, but i always dread it when someone "official" is coming to the house because Kai goes crazy!

 

Good luck with the DLA,

 

Loulou x

[Amanda32]

Just received my letter after my son's diagnosis of ASD, it dates 1 dec 2004.... It says no change to the money i get for him at all. If i was to appeal i think i may be knackered as it says you need to do it 1 month from the letter date. I only got it today as this is a duplicate as the other got mislead.... Does anyone know or had the same problem with this?

Thanks

Amanda <'>

[lynyona]

Well i can tell you that when kieranss renewal notification came i just popped it away like you do and it wasnt untill my carers allowance ended, i actually read it and found out that it had been lowered and by this time the appeal time was up, the some one told me about a super session you can ask to have your claim reassessed if you think that their circumstancees have changed, mine was that kieran had actually got a dx of asd since applying but only last week i got a letter saying that their original decision stands, as they dont think he needs as much care now as he used too(id argue the fact that now he s left school he needs more care as i have to make sure that there is someone here with him all the time) and they said that if i didnt agree with the decision i could appeal but after reading of appeals ending up with maybe nothing i ll stick with what ive got. lynn

[lisa]

Just had a renewal letter from DLA. After hearing a few of the stories on here I was worried that they'd try to lower the care rate but Jack's been awarded high rate care and low mobility until June 2008!! It's such a relief that I haven't got to go through all the forms and worry again for him for another 3 years.

 

It always amazes me when they so often only award for 18 months for our children when they know that it's a lifelong condition that they'll never grow out of. What's the point getting a parent who already has enough to deal with to fill out the same information year after year.

 

Lisa

[Helen]

Well done Lisa

[Kathryn]

That's great, Lisa. You must be relieved. I agree, no one should have to face these forms more than once - it's torture!

[nellie]

That's great news Lisa.

 

Nellie xx