Just found out I have been refused DLA

[Chocol8]

...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

I've not gone through the appeals process myself (touchwood!) but I would say you should definitely appeal. I think one MN'er went from being turned down to being awarded Higher rate so it's worth a try.

Appeal appeal appeal.
Can't believe you got turned down!
I was amazed that I got DLA for Lottie when she was only 3 months old, I thought that was a bit mad, so if they are giving it to a 3 month old baby why can't they see that you deserve some financial help? BTW - L got low rate and always has even though she's not walking or standing yet and my friends son who lives in the same area and who is walking gets high! How do they work that one out, who decides who'll get what?

i'm snding my form off again tomorrow as l is 3 this year so they look at her case again and I expect to gey high and if I don't I'll appeal.

Who helped you with the fomrs btw. Just can't understand why they would refuse you. Can we help you fill out form again with ideas on what to say in certain areas of the form?

Appeal.

definitely appeal! we got turned down and appealed in writing - result - higher rate! tbh i dont think they know what they are doing. its definitely worth a try (((hugs)))

The lady from the Family Fund helped me fill them in (they'd gathered dust from 3 or so months previous). The problem is that we ripped through the forms really quickly and she said that she would fill in the extra bits - which needed expanding on - at home.

I received a FF payment within 2 weeks cos she marked it urgent as i'd waited about 6 months for an initial appointment. I can't be sure but when I called her to thank her for her help with the forms and to tell her i'd got an award, I think it reminded her to fill in the forms cos DLA wrote to say they'd received the forms over a month later...so.

I know that I could not fill in those forms again if my life depended on it, but it does seem mad that quite a lot of the parents in the Autistic group we attend receive it and in some cases, my ds is alot worse. You're right Thomcat - i tend to think they have a system where they pass so many in a day and just refuse the rest on the pile. If only they knew what it's like to live with this day in day out. I am really at my wits end some days (like today) and feel like I can't do it anymore. I am so tired all the time and just seem unable to keep on top of everything.

Is the appeal process a long one btw?

i would definatley appeal against it there is no standing to see why you were refused when you get the form back read through it all again and make sure you havent missed a thing or if there is anything you could add to it because the dla is a stickler for red tape i know i go through it with dp every 2 to 3 years and its a pain

appeal and while you want to be positive - I was told to imagine my worst day and what I had to do - and write it all down!!! Every little thing .. no way should you let it drop

Chocol8....... for you.

Appeal - you can get the form from the Citizens Advice or any Job Centre type place. We are currently in the middle of it and are waiting for a date for a verbal hearing. It can take a while but if you win you'll get a lovely lump sum.

There's some good general info about appeals here . Good luck with it.

you must appeal chocol8 If your son needs constant 24hour care then you SHOULD get higher rate angry on your behalf

Chocol8 - you say you can't face filling in the forms again. I know our children have different problems, but I'd be happy to a) go over what I put and help you either on the phone one evening or by personal email or b) send you a photocopy of my forms. It'll just give you an idea of the sort of thing to write????
So for example under bathing and washing I put:
My DD needs to be undressed and dressed, she needs to be carried in and out of the bath. She needs constant supervision whilst in the bath. She needs to be washied and dried.
How many days a week - 7
How many times a day - at least once
minutes - approx 60
If I can help you then I'd like to, just let me know.

Or - do you receive Portage? If so they can help you fill out the form at home with you.
I know how awful they are but you and your family are entitled to and deserve help so it has to be done really hon'.

BTW - The forms took me about 2 hours, with help from my Portage home visitor and then i went back and added a few extra thoughts. A few tears and a chat on mumsnet and I got there. They are SO depressing but when they're done they're done.

Let me know if I / we can help you okay.

ditto what Thomcat says.

If you want a copy of the last DLA form I sent re my dd, please e-mail me and I'll be glad to send you it.

The form took 6 hours to fill in but I made sure I put everything (and it doesn't matter if you repeat anything). Definately appeal, if you feel you're up to it.

One tip I have heard is use ds's name all through the form e.g. soso does this, soso can't do this etc. instead of 'he'. And I agree with the idea of imagining your worst day.

Go girl!!!

When you fill in the night bits make sure you make it clear that for each time you are up you are up for 20 minutes (at least) otherwise it doesn't count (A SW told me that). For example in the Why the child needs someone awake with them I have written"
A will not sleep in his room at the moment. If he wakes in his room he screams. Currently therefore he is sharing a bed with his mother. If he wakes he has to be taken to the toilet, otherwise he removes his nappy and wets the bed. Once awake he finds it very difficult to settle. He needs someone awake with him as he will wander around the house if left. EG Last Wedensday he woke at 2.50AM and was awake the rest of the night. His mother was awake with him the whole time.

How many nights a week? 7

HOw much of the nightt? When awake

How long do they need someone awake? 180 minutes +

Goodness he's improved! (Back in his own bed for starters thank god that was driving me mad!)

Thanks very much for your help girls, your support and advice has really helped.

The weird thing is that I am so used to his behaviour (and tbh I am sure it is not as bad as some - just bloody hard work) that I kinda forget what is just normal bad behaviour and what is due to the ADHD/AS. (At the moment he is tantruming about me recycling an old train box - it has no trains in and hasn't for ages, but for some reason he wants to keep it!)

If it wasn't for the Ritalin, EyeQ and Melatonin I would have gone round the bend and back again - literally! Early morning and late evening are the worst times by far, but they still have probs with him at school.

I called the SS today and spoke to 2 very unhelpful people who just weren't interested. The receptionist hadn't heard of the appeal form, so as far as he was concerned, it was conversation over...yeah right! They are sending it in the post for me. Is it a very long form?

Thomcat and Dottee, thank you both very much, a photocopy or email would be fantastic.
Luckymum, thanks for the link but the page cannot be found.
I don't have a portage worker - infact I had never heard of one before I discovered MN! I'm not sure I have a HV either, or if we do, we haven't seen her for about 4 years.

My ds is currently having "Theraplay", which in my opinion is not doing anything to help - in fact after 2 of the sessions he threw massive tantrums and beat me up. The problem is the psychologist who gave the advice about restraining my ds didn't seem too concerned - but he didn't have to walk around with bite marks up his arm for the next 2 weeks. The sessions are meant to be every fortnight or so, but we haven't had an appointment for about 5 weeks now. In my opinion it is a waste of our time, but it is the only thing they will offer, so I guess I have to try it.

Thomcat and dottee, what do I have to do to let you know my details? x

Chocol8...sorry I'm rubbish at links. The address is www.bhas.org.uk/. Hope that works, otherwise I have the info as a pdf and could mail it to you.

The appeal form isn't long, just an A4, both sides, but you can send extra info/letters of support with it - but you must send it within a certain length of time from the date on your decision letter (28 I think but could be 14??).

Choccy, if you want to get hold of anyone, just click "contact another talker" at the top of the page, and fill in the details.

Forgot to say, they will read the appeal decision down the phone to you, and why they have come to that conclusion if you want.

Thanks Lou and Lucky...the decision came back in writing and said he didn't fit certain criteria, but in my view he did regarding the level of care he needs. I would say he should be classed as a middle rate, certainly not a high rate. Perhaps the FF lady didn't word it very well. It's difficult to know what she wrote because i didn't see the form before it went off.

I will contact another talker later on when the little fella is in bed.

Just to re-itterate what Lucky said about the bhas website it literally takes you through every question in minute detail and tells you what they need to hear, well worth forcing yourself to look through it for reference. Another person at Contact -a Family told me that the person that you put down as the reference can also make a huge difference to the result. I put the name of the Dr who diagnosed ds. This whole system seems to depend so much on the string of individuals that you come in contact with, a farce by any other name.
Good luck.

I've just contacted you through 'contact another talker'.

If you've chosen not to accept messages, please contact me this way (as I've agreed to accept messages).

Hope we can get through to each other.

I've sent you an email through mumsnet too now. Again like Dottee I'm open to receiving emails if you have already declined this option with Mumsnet, in which case ask them to contact me for you. The offer to go over stuff on the phone one evening also stands, or I'll pst you a photocopy of my forms. Whatever, between us we'll get you there.

TC xx

Think you've got all the best advice already, just wanted to say sorry to hear you've been turned down

Thanks Dottee and Thomcat - I went on-line today at work and saw names that I didn't recognise so deleted one by mistake (sadly, my deleted file doesn't hang onto them), but I got a message from you both and will reply through those. Thanks Davros. x

APPEAL., and get someone who knows the system to help you. My latest re-assessment was filled out in March (no decision yet mind). I was helped by a "benefits rights officer" from our local district council. He knows what terms they like to see, and how they add up the 'points' system.

That said, he rang me the other day to see if I'd had a decision. He saidf then that the system seems to be less predictable than ever before. But if I fail, he'll assist with an appeal, and come to tribunal with me if necessary.

Do you have a social worker? Have you tried for direct payments from local social services to pay for help with care?

Easy - I'm not everso keen to go to the local SS - the memory of me signing on years ago depresses me more than words! That said, the FF lady did say that they may be able to help, so may be I will stick my toe in the water and call them.

We don't have a social worker or a portage worker, but I may well do what you did, if I can find one in the council. I feel very unsure of the appeal because I haven't seen the original forms, so don't know what was said, but thanks for your advice Easy. x

Choco- No love, It's social services, not social security, nothing to do with the old DSS where we used to sign on.

I always said I would NEVER have a social Worker, I thought it was for inadequate people who were unable to manage their own affairs. But last year my circumstances changed temporarily, and one came to my aid. She pointed out various ways I could find help, and started the process. Now some of the help is in place, some I don't need, and social servicer don't trouble me, unless I ring them (sometimes 2 or 3 times), to ask for advice or help.

HTH