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Original poster

Just found out I have been refused DLA

87 replies

Chocol8 · 19/07/2004 23:01

...after all the time it took to pluck up the courage to find someone to help with the forms and waiting over 2 months for a reply.

I would like to appeal if/when I can get my hands on the form from SS, but at the moment it all seems a bit pointless.

Everyone who knows my ds knows how much care and constant attention he needs because of his ADHD and AS, but I know the powers that be would not be able to cope with him for over 10 minutes...he is a real Jeckyl and Hyde character and can be a monster (quite literally) one moment and an angel the next. He takes 30mg Ritalin, 4 x eye q and 9mg Melatonin, so 10 tablets in all daily.

Do those of you "in the know" think it is worthwhile appealing or should I just let it drop?
xx

OP posts:
dottee · 22/07/2004 22:04

Hi C8

Talking about Social Services, I'm currently being assessed by the Children with disabilities officer of our local council. This is with a view to accessing respite services in the future. The lady has told be about Direct Payments. I would like to look into this because it makes me become the 'employer', not Social Services. For example, (in theory) I may be able to 'buy in' Crossroads respite or pay someone to do the housework whilst I'm caring for dd during the school holidays.

This is different to Disability Living Allowance which you have applied for.

Just to clarify, DLA is dealt with the office now known as DWP (Department for Work and Pensions)in their Disability and Carers section (at Blackpool). SS stands for Social Services which are based at your local council (it's confusing as SS used to be Social Security as in the dole etc.)

I really do hope you are succesful in your appeal as it will open the door to Carers Allowance.

Original poster
Chocol8 · 22/07/2004 22:04

Derrr! Sorry, Easy, my brain is currently dribbling out my left ear - of course you mean social services!

I will certainly give the things you suggest a try, thanks for putting me straight! x

OP posts:
Easy · 22/07/2004 22:37

Contact me (via contact another talker) if you want to talk about any of these more.

dottee · 22/07/2004 22:40

Just got your e-mail.

I'll try and get back to you tomorrow night or Saturday.

Quickie re: public loos (in your e-mail). Get onto Social Services and ask for a RADAR key. That gives you access to most public 'disabled' toilets which are unisex (and private!)

Thomcat · 22/07/2004 23:20

I got your email too and replied to that and contacted you through mumsnet too. I've copied the forms for you alreadyt and they are waiting for you on my desk at work.

Davros · 24/07/2004 09:34

Dottee, I've been on DPs since December so please ask if I can help with any info. Started on 2.5 hrs and just got them to agree to 7 hours a week!!! I get someone to look after 16 mos DD while I take DS swimming/trampolining (she also does the ironing while she's here).

dottee · 24/07/2004 10:53

Chocky, I'm not as organised as Thomcat and I mentioned to DP I needed to scan something last night. Anyway, this morning's almost come and gone and the doc is still sitting next to scanner (I've missed the post, in other words). So it will go first class on Monday now, sorry.

Davros, thank you very much for the offer. Your 'arrangement' would be ideal in this house. I feel I neglect DS sometimes. He was off last week whereas DD broke up yesterday and we (ds and I) did so much together. (We even bumped into Pennypocket on Wednesday and Hulababy yesterday , just by chance!

dottee · 24/07/2004 10:55

Doc meaning document not G.P.

Davros · 24/07/2004 11:56

Dottee, the arrangement works for us because I get to be with the littl'un in the daytimes and then me and DS spend some quality time together, just like we always did before DD came along. And we all spend plenty of time together at bathtimes, breakfast, weekends etc so its a good combination. Some people are aghast that I use the "respite" time allocated by Soc Svs to be with DS myself and that it should mean a total break for me, but I'm happy with it this way.

Original poster
Chocol8 · 24/07/2004 16:44

Dottee, don't worry hon, I know how it is - I sometimes don't get round to stuff for ages, it's just the way it is with so much else going on.

Would it be easier to photocopy it rather than scan it? I don't mind which way it comes.

Davros - I don't get respite but when I get a break and I am away from my ds, (doesn't happen very much nowadays) I spend the whole time worrying, so sometimes it's easier not to have a break! It's whatever makes you happy, isn't it. x

OP posts:
Thomcat · 26/07/2004 09:50

Got your address this morning, will post them today.
TC x

dottee · 26/07/2004 16:59

My copies have been posted this afternoon too.

xxx

(ps note how I ramble on when you read them and how I put 840 minutes (meaning all bleedin' day!))

Thomcat · 26/07/2004 17:12

LOL Dottee, I put "constant"!

dottee · 26/07/2004 23:46

TC it's of ask a stupid question ....

dottee · 27/07/2004 08:49

I meant ... it's a case of ask a stupid question ...

It was late, and I'd had a hard day of trying to get the kids to enjoy themselves on holiday!!!

Original poster
Chocol8 · 27/07/2004 17:48

Thank you both Thomcat and Dottee, you lovely people - I have just come home to find 2 large brown (usually ominous - heh heh heh!) envelopes from you both.

I will take a look after ds has gone to bed. I still (shock horror!) have not received the appeal form from SS, so they are getting another call tomorrow morning...it's only been nearly a week though so it may arrive on Saturday I guess.

Thanks for your help girls. Mmwah! xx

OP posts:
Thomcat · 27/07/2004 17:55

You're MORE than welcome and like I said in my email, please, please call me if you like and we can go over them. I'm no expert but it is nice to have soemone to do thise forms with you.

Re the form from SS - yeah right! I made a phonecall a week to get me forms sent to me for just over a month. I took a few weeks to fill them out, busy, waiting for Portage help etc and they sent me a letter saying we sent you forms a while ago can you hurry up and get them back to us!!!!!!!!! ha haaaaa, honestly!!!!!!!! Chase them whenever you have the strength and be prepared to hear the engaged tone for the first 50 attempts and then to get cut off as you evetually get through!!!!!!

Original poster
Chocol8 · 27/07/2004 17:59

You're right, it took me nearly all day to get through, and I did get cut off! I just really don't wanna go down there and queue - I only have a half hour lunch, and it may take 5 hours!

What, they chased you for forms??? I am GOBSMACKED! The thing is I only have 28 days to appeal, so need to get my finger out and sort it. XX

OP posts:
Thomcat · 27/07/2004 18:04

Why am i not surprised you had the same experience in getting through.
So frustrating. Sympathies
You shouldn't have to go down there but you will have to chase hard. I spoke to 4 different people who all said they would send them straight out. 2 sets of forms eventually turned up.
however careres allowance form, got straight through, arrived the next day!

Original poster
Chocol8 · 27/07/2004 18:57

Thomcat - I just called the lady who helped me fill in the forms and left a message as I want to know if she kept a copy of my forms.

Then I called the helpline number where you can find out if you are eligible for any other help (which I am not). I am now going to write to the office (which he gave me the address for) and start the appeal off that way...good thinking Batman!

This is after a day in which I tried in vain to fill a Ritalin prescription written by my ds' doctor, who STUPIDLY wrote on it "as directed by the hospital"!!!! Of course I hadn't given it a second glance til today and realised what he'd done.

He wrote on a comp slip that he would not be able to prescribe more than 1 months supply because he needed written confirmation from the consultant about the dosage! So now I am down to my last few and I tell you what...he is going to be hearing from me! Especially as i got the full brunt of un-Ritalin-ed ds last night - absolute evening from hell, because the minder gave him his tablet late.

I called my consultant's secretary, who is on first name basis with me now and explained my dilemma and she said not to worry as the consultant will write a script today and I can pick it up tonight - for more than 100 tabs, and she will do this everytime so that I don't have to ask the knob of a doctor for his prescriptions, in writing every month! She needs 3 days notice by phone.
How lovely. All it takes is a bit of common sense and a bit of courtesy that we as parents know how to medicate our children safely and efficiently!
Arrrghhhh! Rant over, I thank you! x

OP posts:
Original poster
Chocol8 · 27/07/2004 22:35

Well, I just went through the copies of your DLA forms girls and let me tell you - that was a real eye opener. You two have so much to deal with - loads more than me. I really don't think that appealing will do me any good.

My ds used to be alot worse than he is now - 8-10 mega tantrums a day but because of the Ritalin, Eye Q etc, he is so much better - maybe one or 2 a week now, if I'm lucky.

But really, you guys are an inspiration and seeing what you have to do for your children, I do not deserve DLA. x

OP posts:
dottee · 27/07/2004 22:49

Bless you Chocol8!

Take into consideration the gap between your ds and his peers may widen as he gets older. So plan ahead! Imagine if he was 'normal'! How less work would you have to do? I was going to say how less care you would give but that sounds horrible. Am I making sense?

If he was 'normal', you wouldn't be considering asking for assistance. Go on, crib some of our wordings and give it a try.

Thomcat · 27/07/2004 23:55

Right I DEMAND you call me. Of COURSE you and your DS deserve DLA. Lottie has been getting it since she was 3 months old , when apart from having to go the hossie every week etc it was, I imagine, no differenrt to caring for a NT child. Remember we've taken out all the positive and left only the negative. Things are never as bad as those forms make you feel, which is why they are so depressing. Your child needs more care and attention that a NT child right, well then you get DLA. Let us help you. Give us an example of what you do for him that you wuldn't have to do for a child without his special needs and we'll find somewhere to put that on the forms and we'll take it from there.
Don't think for a minute i have it harder than you, i don't. Come on lets get your forms filled and we're getting your son DLA between us and that's that.
Remeber those forms require you to lay it on with a trowel.
Okay

Thomcat · 27/07/2004 23:59

choc - forgot what address i wrote on the envelope so forgot where you are in the world. I'm Pinner, near harrow, A40, target roundabout or polish war memorial. Can you get anywhere near me and we can go over stuff over coffee or wine or something? Don't worry if not just an idea.

Thomcat · 28/07/2004 00:01

PS - You don't have to call me or meet me at all,m realise I sounded like a pushy mad woman, just really want you and DS to get what you deserve and want to help if I can!!! Sorry!