DLA

[dolly]

All the best.All this form filling is a nightmare

[lindy-lou]

we get middle rate care for India,we got this on reconsideration after my our paed wrote a lovely letter,India does not show her traits at school so i am going to include lots of evidence that this can be the case with aspergers ,do they HAVE to have evidence from the school?

[stressedmumto2]

I applied when my son was 4 or 5 I think and the paed wrote a letter and also reprt from playgroup, so yeah must have been when he was 4. Got high rate care and low for mobility. Atthe time he was only dx with adhd but I did put the AS was suspected.

 

Justrecently done the form again and got awarded the same this time I put in loads of evidence form specialists in field of autism who had observed his behaviour when out.

 

I feel I am quite lucky in what we have got but am also thinking of trying for high rate mobility as he is very dangerous when out and about and does pose a high risk, often refuses to leave car and often runs out in front of cars.......... prob would never get it though and would end up with none

[rach04]

my lad gets high rate carer and low mobilty but weve got this on the dx of dyspraxia alone

[Bambi]

I have just been refused DLA (got letter 2 days ago) and i have just written my letter for the appeal (will post recorded delivery in the morn).

 

I was disgusted coz they said T was not a danger to himself or others!!!!along with many other points that T actually does need help with, they obviously didnt even look at my form, i have to stop him self harming and harming others many times a day!! well i have given them what for and now i have a dx to come so they can shove that where the sun dont shine!

 

This is what i dont get, it really is EVERYTHING that we need that seems to be a battle! i thought kids and OAPs were priority to the system/NHS and u would really think disabled/special needs kids would be very high up there too but as we know it really isnt the case

 

Bambi x

[di30]

Hi

 

We applied for my 12 yr old son (Aspergers and learning difficulties) on the 22nd DEC 2006, the decision was decided on the 13th march 07 that my son did not meet any of the needs.

 

I have e-mailed and wrote and sent in more further evidence support to prove to DLA DEPT that my son needs constant attention day and night, due to his difficulties. I have asked them to look at the decision again and also have a letter going in today from my local MP, so not sure how long we will have to wait to see if they have awarded my son or not on reconsideration.

 

But I sent at the start all evidence and letters from my son's child specialist, Senco, Ed Phys and a member of the family who works for the health service, so goodness know why he was turned down as they all state how vulnerable and easily led he is and has a number of problems regarding aspergers, in which he needs support at all times.

 

But i will fight for what he's entitled to as his rights.

 

The best of luck to everyone else too who are appealing or asking them to look at the decision again, don't give up !!

 

Cheers Di

[mum22boys]

Hi di30,

 

Read your post and was wondering if you have asked the DLA how they based their decision. Did they apply to any of the people you put on the form? When I put in M's first DLA claim they wrote to the school and she brushed everything over and said he was fine. I only found this out because I requested from the DLa the info they had regarding M and they had to give me a copy of his schools report. i challanged the school and she re-wrote the form outlining ALL his problems, just as she should have done first time round. It took me 8 months to fight for M's DLA and we got to appeal stage when they agreed to look again (this was after being turned down at reconsideration stage). They then awarded M middle rate care and lower mobility. I have just had his renewal reply through and it was awarded same rates for another 3 years and I didn't send in nowhere near as much info as I did first time round and they didn't write to the school so that was a bonus!!

 

I would advise you to keep in regular contact with the DLA office though. On one occassion as we asked for appeal I spoke to a lovely lady who gave me her contact details and fax no and she had a collegue of hers dealing with the claim and when she looked at all the info I had sent in she said she was amazed he wasn't awarded it. I am sure it was through keeping in contact reguarily that got me there in the end.

 

Good Luck

 

mum22boys

[di30]

Hi to Mum22boys

Thank you for your reply.

 

No I hadn't actually contacted DLA direct to ask why they turned this down, but reading on the decision letter they stated he wasn't eligible as they didn't think Daniel met those needs.

And they said they went by the information I sent in, but they didn't even try ringing my sister who had also wrote a fantastic statement and she works for the health services.

So basically I had sent in all in all a support letter from the Child Paediatrician, The school and my sister.

 

I applied 22nd Dec 2006 in which they received the form as confirmed on the 30th Jan and had a letter the following week (1st week of Feb 07) to inform me they have not made a decision yet as they required further information from both the School and the Child Paediatrician.

They sent another letter then a fortnight later to say they were then only waiting for the letter from the Child Paediatrician, so obviously they had received what they wanted from the school.

 

Unfortunately in that time as I had not heard anything I decided to contact the Child Paediatricians secretary who informed me that she was on leave for over 3 weeks but will contact me when she comes back in a few days.

 

The Child Paed had kept her word and contacted me to tell me there were 2 letters from the DLA in which 1 was sent the first week of Feb then a duplicate, and she realised that she may not have given enough information the first time, so she added a lot more that explains the difficulties from day to night, as he does need support 24/7.

The following week then was the decision.........yes it was turned down !!

 

It does make me think now what further information the school did give, as its a secondary school with approx 2000 pupils this can be hard to keep track, but I do have a funny feeling the school may not have put their words down in the way it should be.

 

I did try to contact the school myself to ask if i could have a copy but unfortunately the one who had wrote this was away !! but then i was informed that i would not possibly be allowed to know what was added due to confidentiality ???? So what now !!!

 

Anyway, in the letter/and email I sent to the DLA dept who said they would reconsider Daniel's claim, I had explained, that the school staff may think Daniel may be settled and happy, but they only see him at school and not constantly as he is in various lessons by different staff 5 times a day to include booster lessons of literacy, numeracy and social skills etc. I explained as soon as my son is home from school who i have to walk there and back everyday due to him being vulnerable and easily led that he is so distressed from the days at school in which I am constantly helping him with his homework which he cannot cope with.

 

By both email and post i have now sent a number of things to support Daniels reconseration, like his letters regarding help and support at school, teacher assesssments from various staff that most say he is struggling and socially struggling quiet so so !

 

I had also come across his end of year assessment from his last year of junior school which this states about him being vulnerable, easily led, does not mix, has problems with making friends, will not take part in team games etc.

The games teacher in his comprehensive school had also said the same thing as Daniel refuses to take part in team games like football, rugby etc.

 

So now today I have had a great email sent from my MP who have also sent a copy to the DLA UNIT MANAGER today , and the DLA have also emailed me to inform they have received this and this will be handed to the person who is dealing with my son's decision.

 

I had sent my further evidence on Monday 23 March by 1st class recorded delivery in which i checked this out on the Royal mail website 'track and trace' which confirmed delivery this morning (Weds), but DLA have said they have not received it on their section yet ??

 

Anyway, I will keep you informed, fingers crossed.

Again thanks for your reply.

Di xxx

[savagevixen]

Hi

I applied and received Middle Rate care for my son. This was with the ADHD diagnosis. I haven't yet told them about the ASD diax in November. It was awarded for 2 years.

Vix

[Annea]

My daughter was also given higher rate care and lower mobility.

 

I filled my forms in online but over the period of about two weeks using the NAS guidelines.

 

I then copied the forms and sent them to my daughters paediatrician, Initially even though I had asked them NOT to contact her GP who never saw her and to contact the paed, the forms were sent to the GP. I had to go to the GP and ask them to send them on directly to the paed as I was told if they were sent back unfilled it would discriminate the case.

 

The paed was brilliant and filled the forms in using the forms I had sent her, so we were saying the same things.

 

It is a nightmare though especially the mobility part, as it is so restrcited. I have problems with two children one diagnosed AS one not yet sure. I also have a very active 5 yr old who needs to be watched <as normal kids do!> I also have chronic fatigue that results from an incurable liver disease, so really struggle myself when out, so it is very difficult to control all the children especially parking some distance. I myself was turned down for DLA, we haven;t yet applied for my youngest as we are awaiting assessment, and my AS daughter has lower mobility, but combined we really do struggle!

 

its a shame they can only see as far as their noses and not how we all cope every day .

 

Anne

[di30]

Hi

Nope my son Daniel was turned down in the reconsideration stage on the 11 April of where they had sent me 'written reasons' and the copy of the report from the school.

 

Due to the fact the school as not assessed Daniel since Nov 2006 he is still having ongoing issues.

I requested for my son too see the Education Psychologist last week and Senco so that Daniel could open up and be honest about his problems.

One issue is refusing taking part in games/pe which have been ongoing ever since he started the mainstream school in Sept 2006.

 

Daniel receives extra help 'booster lessons' for the main subjects.

 

Anyway the head of the school ticked Daniel takes part in ALL PE activities and needs no supervision, is aware of dangers when crossing the road, and does not take medication !!

 

All of these are incorrect, for one

Daniel does not take part in physical activities (oh even though the head is aware of aspergers with Daniel) he have stated he is claustrophobic and basically and changes away from everyone else !!

but isnt this a trait for aspergers ????

 

Road safety as soon as Daniel is in school he is not near a road as such, i walk him to and from school and cross the main roads with him as he is easily distracted and down to experience runs across without looking.

 

Another one ....medication !!

Daniel has asthma in which he takes his ventolin to school and sometimes needs reminding to take it when requested, this should be on the medical records for when we filled in the med form when started the school.

And I am disappointed to learn they do not supevise him, due to the problems they know he has. and his vulnerability !!!

 

I have now requested a meeting to have all main of the staff included, such as the head, SENCO, The Ed Pysch and Parent support services (PP) !

 

I am also waiting for a copy of the report of any conclusions of the appointment Daniel attended last week !

 

I am appealing for and have already emailed the DLA of this and about the out dated school report for them to be aware of this.

 

Wish me luck and all the very best to everyone else too.

 

Cheers

Di

[lynda4]

I used to get higher rate DLA for ds2 and lower rate mobility. In my opinion he should have had higher rate mobility but even though we appealed we didn't get it. He's now 22 and still won't go anywhere on his own, except getting one bus to and from uni, no other buses. He will also walk down the road, just a couple of blocks to the barbers (doesn't like doing it) but wouldn't go anywhere else at all, even the shop right next door. When he was somewhere in his teens the personal care was reduced to middle, which I think is probably about right, so I didn't contest it.

 

Ds has always got middle rate care and lower rate mobility which again I think is about right, so I haven't appealed.

 

I always use the SENCO or even better, my child's support assistant for the school side of it. I think then you get a better and more personal write-up than if you'd just put the school name and address and had no control over who wrote it for you.

 

This page is full of useful info, to help you say the 'right' things

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1040

 

and use the supplementary information form at the bottom of this page

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1041&a=7788

 

you may also find this helpful

 

http://www.cafamily.org.uk/FactsheetDLA.pdf

[di30]

Hi there.

 

A report from Senco was added and that didnt state much either, but letters sent from the child paediatrician with all Daniel's problems were stated from day to night time ongoing issues.

 

I just feel like the school can't be bothered and the report looked rushed !!

 

At my son's school we have always got to go through the head first !!!

 

But in the meantime we have requested a meeting to resolve these ongoing issues, so now just waiting for a date now.

 

Will keep you posted.

 

Cheers

Di

xxxxx

[becci]

did not get it,just found out by letter yesterday.he isnt disabled enough.

[Devon mum]

I did vote on this a while back but feel I should add

 

DS1 has medium rate care only Awarded to his 17th birthday

DS2 has high rate personal care and low rate mobility Awarded to his 16th I think

DD has low rate for both awarded til Dec '08

 

All claimed for in December last year.

DD's claim went to tribunal to get the award.

[Devon mum]

did not get it,just found out by letter yesterday.he isnt disabled enough.

 

You should appeal, I did for DD and with the help of CAB we won at tribunal.

It was all down to what the primary school said in their report.

[di30]

Hi my update is

We are attending a hearing - tribunal on the 24t Sept, we have gone this far and not giving in now, I will say the same to everyone else too going through the same situation.

 

We applied Dec 2006, it was refused March 2007 then refused again during reconsideration and we then appealed.

Okay it has taken this long, but more strong evidence have been sent in since from CAMHS and other specialists and help and support letter from my MP.

 

Fingers crossed to everyone else going through this - but please do not give up, sometimes we need to fight, but am aware we will all win in the end, no matter what.

 

Good luck all.

Di xx

 

Son Dan age 12: ASD - ASPERGERS SYNDROME - HIGH ANXIETY LEVELS and some LEARNING DIFFICULTIES.

[jo4themo]

Hi there

Niamh currently gets DLA at Higher rate for both mobility and care (she has a mild physical disability as well as Aspergers). We have recently had to reclaim and this time they have reduced her mobility to Lower, which we disagree with as she has no road sense, no stranger danger and can be unpredictable so never goes outside the house (apart from the garden which is secure) on her own. We asked for a reconsideration and they got back to me this week saying they were sticking to their original decision - they based this on my evidence alone and never contacted anybody mentioned on the form

I have phoned CAB today and spoke to a lovely lady who has promised me the manager will phone me tomorrow to advise me further . I am not looking forward to having to go to a Tribunal, but it looks as though I will

Emma

[Kathryn]

Good luck to everyone waiting for decisions and tribunals.

 

I'm waiting to hear myself as I've recently sent in my daughter's renewal form. I believe our GP has sent in a very supportive report, but I'm worried they may try and reduce the amount she's been getting. I'm not sure I have the energy to fight it out at tribunal - although I will if they try to take it away altogether.

 

K x

[di30]

Good luck to everybody too, my fingers are crossed. <'>

 

These flipping forms were a damn nightmare, and I just wish I had help then to fill them in such as from DAP who will be now helping at the oral hearing next month.

 

Best wishes to all.

 

Luv Di x

[pebbs10]

Hi,

Just read this thread, got middle ratecare and low rate mobility for my ds but at the time was dx with as he now has been dx with adhd and sensory issues should i inform dla about this??

 

Anne

[jordansmum]

hi

hi there my son is on the autistic spectrum , at the moment they are reviewing where he is. in the next 4 weeks .my little guy is 8 ,and he gets no care at all although he needs supervision with his sisters etc and wanders and needs us to help dress him wash him brush his teeth ,clothes have to be in a certain order when putting them on,up and down in the night god the lists go on i have been fighting with dla for ages and i asked for a reconsideration and 11 weeks later it was a big no again , i asked them to send forms so i could appeal so i did within 2 weeks, there was money in the bank for low rate mobility as he needs supervision in unfamilar places , so i am at the reconsideration process again for the care, can anyone share some light on this as if they say he needs supervision in unfamiliar places ,would it not make sence he would need some care needs also any way i have had my rant thanks angie

mum to lauren 12 jordan 8 asd mary-kate partially sighted nathan 17 months development delay ,reflux,epilepsy

[ScienceGeek]

Still waiting for them to look at the decision again. CAB sent a letter in June to them so they still have a few more weeks to make a decision (according to their 11 week timescale on their letter). They flat out refused my claim within a month at first, no explanation, no medical, nothing. CAB said that was wrong, but I know that the Bristol team are flat refusing the majority to try and get claim numbers down.

[ScienceGeek]

hahahahaha! After my post yesterday, I got a letter this morning approving it.

[NobbyNobbs]

they keep sending me letters saying theyre sorry they haven't completed my claim yet, but give no timescale. last i heard they were waiting for my GP to write to them. i asked the GP who said nothing had been sent to him so who knows what's going on

[sarahponari1]

we were one of the few lucky 1s that got it straight away without any problems