Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

Please would someone be kind enough to check my reply to DLA ?

74 replies

Chocol8 · 11/08/2004 23:09

sorry to be banging on about this yet again but please can you tell me if the following letter is ok - all suggestions welcome. I took bits and pieces from everywhere. Before I send it, (which needs to be very soon) please could you tell me if it is correct?
Thanks in advance. x

Dear Ms XXXXXXX

I write in reply to your letter dated 10th August 2004 (XXXXXX). I was recently refused DLA for my son XXXXXX. I received notification by post and was informed that I should appeal by completing form GL24 which could be obtained from Job Centre Plus. I called them and requested a form but to date, have never received it. I then called DLA and requested the form from them which did arrive.

Wanting to know in more detail why my son had been refused DLA, I called the helpline number and was given the reasons for his refusal.

It is unclear as to where this information came from as it seemed very vague and on the whole, the majority of it is untrue. I was told that my son was “responding well to medication and is a lot calmer, that his speech and academic work is good, that he plays well in games and p.e. that he has good self-care, and good road safety which is age appropriate”. I was also told that my six year old son self medicates Ritalin.

Because p.e and games were mentioned, I am assuming that the school wrote a report which I did not receive a copy of (I requested a copy of my original DLA form from May). Along with the copy of the DLA form, I also received a copy of the letter that his Consultant Dr. XXXX had written, but there was nothing to indicate that there was a second report. I will be speaking to my son’s school when he returns on 2nd September to see if they can shed any light on this matter.

It seems that the details of the DLA form and that of the Consultant have been totally overlooked in favour of the as yet unseen second report. For this reason, I have requested a Reconsideration, as I feel strongly that my son is indeed entitled to DLA.

For the record, I would like to address the points raised in the decision. It is a fact that XXXXX NEEDS Ritalin to be able to lead a more “normal” life (he is currently on 10mg, 3 times a day) and to cope with everyday life. It is the ONLY reason he is still attending mainstream school as prior to his diagnosis, he was at the stage where he was going to be excluded from two nursery schools and his current school. The school is more able to deal with him now ONLY because he is taking Ritalin.

His speech and academic work has always been very good, however when the Ritalin wears off, it is a completely different story. Since starting school, he has been allocated a teaching assistant because of his needs as although he is a bright child academically, he lacks the social interaction skills that “normal” children have. He is now allowed to play games and p.e. at school – in his foundation year, they could not cope with his persistent hyperactivity and excluded him from all physical lessons.

I have to help XXXXX with his self care, although he does like to have a hand in it, I cannot let him do this by himself. His road awareness is atrocious. He could easily run out into the road if not restrained, and given that he self harms, this is a real concern.

Lastly, I was told that he self medicates…perhaps this is an issue that I should take up with Social Services? Depending on whether he is at school, at home or in the care of his childminder after school, he is GIVEN the tablet to place in his mouth by an adult or it is placed in his mouth. He is then watched whilst he swallows it with water to make sure he has taken it. At no time has he EVER self medicated and never will. With or without his special needs, he is a child of six and as such will never be given the chance to self medicate. (Only myself, his childminder and one of two assistants at his school are allowed to medicate XXXXX, and everything is logged fully at school and his childminders.) I would also like to point out that medicating my son with a drug such as Ritalin was not an easy decision to make and I resisted it for a long time and spoke to other parents whose children take it, but unfortunately it is the only option available to me, as without it, my sons life would be unbearable.

I was requested to enclose “evidence” of XXXXX’s disabilities which include photocopies of his Family Fund form, a school diary – prior to Ritalin – and the report from his Consultant (prior to Dr XXXX), Dr XXXXXX MBBS MRCP MRCPCH, before she went on Maternity Leave.

He was referred by Dr XXXXX to XXXXXXX at CAHMS for his self harming behaviour which we attend once or twice a month. Whilst we have been attending, no progress has been made with regard to his self harming or his violent behaviour.

To conclude, my son cannot be categorised simply as a child with special needs – he suffers from ADHD and Asperger’s Syndrome and as such needs special attention, love and patience, 24 hours a day. His behaviour can be extremely aggressive either toward me or to himself and he has harmed himself and me on many, many occasions.

For the reasons stated above I would like you to review his case please. If you have any queries or require further help, please contact me via the following numbers: XXXXXXXXXXXX.

Many thanks
Yours sincerely

XXXXXXXXXXXX

OP posts:
fio2 · 06/09/2004 17:22

excellent news chocol8 Grin Grin Grin

makes you wonder though how many people apply once and then give up doesnt it? Sad

Chocol8 · 06/09/2004 17:25

Yes it does Fio - I was going to give up myself until I posted here...everyone ought to be a member of MN, it should be the law.

OP posts:
blossomhill · 06/09/2004 17:29

Really pleased for you - great news.

luckymum · 06/09/2004 17:30

Great news Chocol8 - the people who award DLA are apparently from a different planet then the rest of us.

Lol at MN law

Twiglett · 06/09/2004 17:30

message withdrawn

Chocol8 · 06/09/2004 17:32

Thank you but I couldn't have done it without MNers. After the weekend from hell from both ds and from my xh, it couldn't have been better news!

OP posts:
misdee · 06/09/2004 17:35

that is excellant. havent had time to read the 1st lot but so glad you finally got awarded it. enjoy celebratying, the extra money does help, even if its only paying someone to watch him for afternoon so u can get some time.

Davros · 06/09/2004 18:24

Great news! Well done for not giving up. How much chocolate can you buy with that back payment?

bambi06 · 06/09/2004 18:56

youve given me hope as ive just been refused too and after speaking to my local autistic trust a very helpful lady is coming to help me write a stinking letter to them to appeal and she told me that apperently they are only allocated SEVEN minutes to read your form so they only skim and this is why so many people are refused..can you believe it, my form just skimming would have taken at leat 1/2hr!!! so its back to the dreaded letter writing and thanks for all the threads as to give me hope and well done everyone for fighting your own little corner ..but it really shouldnt be like that as we have to fight 24/7 as it is in our own home!!

MummyToSteven · 06/09/2004 19:07

great news chocol8!

RexandBen · 06/09/2004 19:49

YIPPEEEE!! Congratulations!

Chocol8 · 06/09/2004 20:03

Thank you - there was me taking my ds to his first swimming lesson and thinking about all the things I could do with the back payment...

Got to the swimming baths and got the day wrong - it's tomorrow. Meltdown from ds in the waiting area.

Took him to the park opposite and he played, went to Tesco, got him a comic and his favourite gateau (the diet now starts tomorrow!) for after tea.

Time to eat and he did NOT want his sausage (for some unknown reason - just took a dislike to it). Major meltdown....clawing, hitting, punching me in the stomach, ripping my clothes, kicking me in the crotch etc. I am dripping in sweat...he is eating his tea - he must be knackered. The house is a bombsite. Bloody hell, do I deserve DLA!

As Bambi said "we have to fight 24/7 as it is in our own home!!". For this reason alone, don't give up Bambi.

7 minutes out of their working day allocated to whizzing through what amounts to weeks of work, that is just diabolical!

OP posts:
heartinthecountry · 06/09/2004 20:16

Are you okay chocol8? You so totally deserve DLA and so so glad you got it.

Davros · 06/09/2004 21:00

Now Choc, let me know when you are ready to tackle Direct Payments.....

Chocol8 · 06/09/2004 21:19

Aaaarrrggghhhhhhh! Nooooo, Direct Payments???

OP posts:
Dingle · 06/09/2004 21:25

Fantastic news!!
I am a soppy cow! eyes all welled up with happiness for you. Well done, your fighting paid off in the end. XXX

dottee · 06/09/2004 21:50

Brilliant! Brillant! Brilliant!

I've just yelled to dp, *'s got her dosh and punched the air!

For the record, Luton to here = 3 to 3 and a half hours. I timed it on our way back on Friday night.

Davros - still waiting for Soc Services to contact me for last two assessments. There was me thinking it was all plain sailing.

Have you read Disney a la dottee on the SN Disneyland thread yet? Yep - I know - very very long!

coppertop · 06/09/2004 21:59

Congratulations Chocol8! Brilliant news.

earlygirl · 06/09/2004 22:13

congratulations choco8 really glad you got this have followed your thread

Chocol8 · 06/09/2004 22:32

Awww cheers girls - and thanks Dottee, like I said - I couldn't have done it without you guys. I would've given up. I mean it only took 5 months from first applying....!

Just thinking I can eventually afford to pay someone to decorate ds's bedroom, buy a new bed for him and put some shelves up etc with the backdated payments. Yay!

Three and a half hours - is there a train service Dottee? x

OP posts:
dottee · 06/09/2004 22:36

That's M1. I took note when we came down on the coach to France. I noticed there's a Luton north exit and Luton South/airport exit - so I was paying attention and thinking about you.

mrsforgetful · 07/09/2004 12:03

I have got 'goosebumps'!

I am so pleased for you both- And as you know i have a real soft spot for you as you and i are in the same boat with a cocktail of ADHD/Aspergers/Ritalin/Melatonin plus a sprinkling of Mainstream school to add to the fun!

We decorated Toms room when we got the backdated payment....!

DLA means that when tom came home after his 1st day back at school with a chunk cut out of his brand new school shirt- instead of trying to mend it - i binned it and reminded him (AGAIN!!!!) that clothes are meant to be worn more than once!
Also he still puls threads in socks....so DLA means i don't meand them either!

Not to mention DLA geting us 'Special VIP treatment' at LEGOLAND....and you MUST get a laminator....Join the club!

They say money is not everything but when you are on low incomes- and you have a child that destructs everything around him...and then on top of all the stress it causes....Money does take the pressure off.

Chocol8 · 07/09/2004 17:41

Aww, thanks MrsF - yes, we do have a certain affinity - I have thought that before.

You're right of course - it does take the pressure off a bit. The backpayment went in today and I promised my sister £100 cos she really needs it and helps me so much - she helped me with remembering situations to put in the letter, which was invaluable.

I still can't quite believe it, but am seriously thinking of cutting my hours at work to 4 days and then have the day to myself and make it a nice long weekend. The idea being that if I am relaxed and chilled, maybe my ds will be too...?
Whilst I have the money, it will certainly let me do things I couldn't do before - even maybe go out with friends once a month - I can afford to pay the childminder her going rate instead of knocking her down!

I have a feeling that my xw is going to stop my money as his g/f is expecting a baby next year, then I am sure we won't see him for dust - he said last night that he is going to take me to court, though I don't even think that he knows what for, cos I certainly don't. Anyway, whilst I am still getting maintenance (or pittance) from him, I shall think seriously about cutting my hours. Oooh, lovely - just the thought of it is fantastic. x

OP posts:
mrsforgetful · 07/09/2004 22:50

The other thing that hopefully you will get is extra Child Tax credit.....in our case....without doing anything....suddenly we got a letter from the Inland revenue INCREASING our CTC by over £100 a month....obviously it does depend on income....but I hope you get that too......it sounds like you work too much for carers allowance....but check that out too....If you are partime..dropping that day may be enough to then allow you to claim carers....and that's almost £50 a week......basically to qualify 'carer wise' you need to HAVE TO CARE for the person for 35 hours a week....well YOU DO THAT....its a good payment as i feel it means that for the kids who could do with less 'pillar to post' if you know what i mean (especially autism etc...kids who may prefer being at home etc) and in the case when the parent has no choice but to work....then a £50 payment....plus working a partime job MAY equate to nearly a full time wage....mind you not if you are a city wizz!!!! ...i'm thinking of someone who is on a £5 an hour job who could cut their hours by 10 and still get the same wage a week....but be able to care for their child maybe ....meaning that like you said they can pay the child minder to babysit so you get to socialise...rather than have to pay them to childmind when you are at work....hope this makes sense!!!!

It's just that when i worked (i am now on incapacity and get DLA myself) ...i worked evenings...and this meant collecting the kids from school- rushing them to their nans...who was often cooking meals which leigh smelt and would have a meltdown due to his sensitivity to smell...then she'd shout at him...tell him he'd have to eat it....etc....then not forgetting all the 'bits and pieces' i HAD to take for the kids (whatever their current obsession was etc...drinks in certain cups....spare clothes....jammas....etc)...that by the time i had done this i was exhausted. Then the next day i would heare from the boys how awful it was....and now all i can say is it is me that collects them/brings them home/cooks their tea/baths them(that's the bit i hate!)/and takes them to bed.....and with that they have noticby calmed down alot....so you dropping a day may well have the same effect....let me know...promise!!

misdee · 08/09/2004 07:43

I thought you could only get Carers allowence if you are awarded high rate DLA care? Same for CTC increase. but i might be wrong. I get carers allowence for dd1 as she gets high rate care, and when dd2 was awarded DLA high rate care our ctc went up about £60 a week. we now get £195 ctc a week, plus carers and child benefit (dh also gets his IB as well). it seems a lot all written down, but when you factor in hospital trips, gp appt, the amount of time goes into my kids keeping them well, it helps a great deal. dh also gets DLA high rate mobility and low rate care, which has enabled to him to have a car, without one he is virtually housebound.

I hope you get some extras with you DLA, i'll see if i can find out what u may be entitled to.