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

Oh bless you both - Thomcat, you do not sound like a pushy mad woman at all - it is really nice of you to offer - and help me the way that you have already. Just reading what you both have to do made me think that in comparison I don't really have a problem.

I spoke to my colleague today and he said that you can't compare the childrens' disabilities because they are completely different.

I called the FF lady who filled the forms in and asked if she had a copy because I'd been refused. She was very shocked, but didn't have a copy. So I called the DLA direct and requested a GL24 appeal form direct and a copy of my original forms. So fingers crossed, at least I will know what was said and not said, and fill in the gaps. The FF lady also said that she hadn't claimed for "personal care" (although, he does need alot of help with this) but she had claimed for "getting around" only, which would then I presume open the door for the Carers Allowance?

He is completely mobile but 4 years prior to the introduction of Ritalin, it was near on impossible to get him out the front door to even do the shopping. I basically didn't visit any friends and kept family visits to a minimum as he was a complete nightmare. I still get beaten and battered sometimes and he is just impossible to deal with. I still try and avoid day trips,(more recently, holidays, and parties if it is just us as he can become out of hand very quickly)I compare him to my "normal" nephew of the same age and the difference is just worlds apart.

The thing that scares me the most is that he is an angelic looking little lad and I fear that he would go off with a stranger although I have tried to drum it in to him that he should not talk to strangers. If someone came up and said that Mummy said to go with him/her, he would go without a second thought. He is so sociable and wants so much to be liked that he is overly trusting. I don't know that the DLA would consider this a disability problem though.

Thom, I am in Luton so prob not too far away - at least not as far as Dottee! Thank you for your kind offer, I would love to meet a fellow MNer. We'll see how it goes with the forms and maybe we could meet up somewhere near - Ikea springs to mind but I don't know that part of the world very well. Thank you. xx

Chocol8 - sounds like you are getting the help you need from Thomcat and others but just wanted to add my voice to those saying you are completely entitled to DLA. And your colleague is right - you can't compare children and their 'level' of disability. At the end of the day we all have children who need extra care for one reason or another, whatever that care may be.

All the stuff you mention about it being difficult to take him out definitely counts. So does the bit about him being likely to go off with strangers. If he doesn't have the same understanding as an NT child probably would of the danger, then it means you have to be extra vigilant whenever you take him out - that is extra care. I am sure there is space for this on the form.

Good Luck - I'm sure you'll get it.

Chocol8....go for it, let TC help, what you describe is just what the mobility for little ones is all about...the amount of supervision they need just to stay safe. You should be able to get some help with care too by the sounds of it.

The point about being refused is that it makes you think just what you are thinking now -that your ds doesn't deserve DLA. They are banking on you thinking like that and not going ahead with the appeal. Its just what I did when I first applied years ago, I gave up. It makes me so You and your ds are due this money - don't give up.

Hi babes, just reading a bit about your DS from your last post and you should def both be entitled to DLA.

You should have the help with getting around and he personal care form to fill out (both green) and the straightforward orange form.

Comparing him to your nephew is a good way to start filling in these forms. Your mate at work was right, no point in comparing Lottie's probs or anyone elses to your DS, they will be so different. Mine and Dottees forms will only give you an an idea, make you think, 'oh yes I have to do that for my DS' or help you with wording, give you ideas. Comparing to your nephew is what you need to do also to make you think of how much more help your son needs.

We all just get on with stuff and don't sit and think about what we have to do in detail until these forms come along. Eg, I just change lotties nappy, of course I do, totally normal, but get to toilet needs section and break it down. she can't tell me she needs to go, she can't take herself there, she an't sit on a toilet, she can't clean herself (Sorry about this Lottie!!!) Suddenly I think 'oh yeah right, I wouln't have to do that with most 2.7 yr olds.'

re meeting. Woud LOVE to meet up with you. Even if it's not for the reason of helping with forms. Maybe we could think of somewhere mutually inconvieninet (!) and make it happen??

TC xx

Argh! Wish I lived nearer! and .

I would LOVE to meet up too Thom...I am so sorry Dottee .

Yes, if we both think of some where we can't possibly get to, then that will be great! I really don't know your area at all. I go out the front door and get lost! Can you think of anywhere? xx

oh Dottee, where are you then mate?

Chocol8 - ha haaaa, you're SO asking the wrong person about things like that, I have no sense of direction whatsoever, inherited from my dear old ma and she also instilled in me a fear of driving ! I'm fine if I know where I'm going but if it's inknown territory, OMG, panic! Hate it so much.

So ... ummm, well let me think about it and come back to you. What's the train situation like round your way? Maybe we should email each other about this so I can keep how pathetic I am at driving and getting places a secret and we we can work out a really complicated journey together without everyone laughing at us!!!!!!!!

Aw TC, I'm too far oop north in Hulababyland (South Yorkshire). I'll keep in touch and be thinking about you both.

South Yorkshire, oh flippin eck! Oh well that's scupered then. Bummer man

Right Chocol8 there is a lovely lady I've been chatting with Nikcola on MN and she lives in Luton too. She is going to amke it to one or other of the Watford ish MN meet-ups and she says to travel/get there with her. She nearly made it to the last one I was at. So that's how we could do this, well it's one way.

Chocol8....PROMISE me that when you appeal you email me through the 'contact a member' as i will help you as much as i can as my son is 10 with ADHD and AS (remember me!!!?) so like the others said there are HONEST ways of answering the questions which are 100% truthful but if written differently can be interpretted in a completely wrong way.

It was wonderful that you were helped to fill them in....but i felt unable to trust ANYONE to fill it in except me....that way i felt it was my fault if i failed!!!!!

i got dla 1st time round for thomas and myself- and feel this was largely due to the website i always go on about that i used that another mumsnetter recommended me to .....infact it was how i first ever came across mumsnet...i'd been surfing and got a link to mumsnet....a post about DLA by WICKEDWATERWITCH....and it was there i got chatting with JIMJAMS for the first time...,...amazing really that i may never have got here!!!!

Soooooooo!!!! In a nutshell please ASK me for help....i really want to !

Thanks very much Mrsforgetful - I have contacted you through "Contact another talker" just now.

Ooh, I have been in contact with the lovely/ies Thomcat and Dottee just lately too and they really have been fabulous.

It's great to be "talking" to my MN buddies on-line. I can't imagine what I did before I discovered MN!

By the way Thomcat - I think there is a meet up on 12th Watford and I did find Nikcola on one of the threads too, but there are a couple based in Watford I think. Thanks for the info - not sure I can go yet, but would love to. How are you today? xx

Hi babe, I'm shattered and off to bed after a nice day in my garden and a fab bbq with more of the smae tomorrow.

On the subject of DLA I'm fuming about it all. EVERY other mother i've spoken to whose child has DS is getting M or H rate, we've only ever had L rate. Also my friend whose daugher with DS who is walking has a blue parking badge and I had my form sent back to me.

Don't think I won't be kicking arse cos I will.
So bloody unfair.

That is so unfair Thomcat - and I don't blame you for kicking off - too bloody right, you give 'em hell! Cheeky feckers, they really don't know their arse from their elbows that lot.

I have just sent you an email in reply to yours on Tuesday. Sorry it took so long, I'm so useless.

Kick their arses - or their elbows, tossers. xx

I still feel its pot luck with DLA forms about whether or not you get it. we have been fortunate to get both dd's on high rate, and some people cant get their head around the fact they get it for ezcema, asthma, vomiting and allergies. they just see it as a bit of dry skin, but it is time consuming, especially now dd2 has started sneaking off to scratch and can cause damage in moments leading to infections.

The thing uhave to remember is to put down the worst days. even if my dd's have a great week, i know the next week could be really bad. i put down every detail, things like changing dd2 clothes when she has been sick, the constant watching to make sure they arent scratching, how often in day we apply creams (dd1 has started doing this for herself now), the foods we have to avoid (well colouring called tartranzine).
If u dont have any success at the appeal then reapply as soon as you can (is there a time limit?). Get your gp/HV involved if possible, get them to fill in the extra bits. My health visitors have been brilliant in helping my dd's get DLA. they mention the fact i cant leave them with people who havent managed ezcema, as they wouldnt know how to calm down my daughters and which creams/bath treatments to use when. so in effect i am on call 24hr a day (tho now my MIL and mum have gotton better at learning these things). Put down if you have to remind your ds to take his meds, or if you have to give them to him.

Just noticed you say you dont know if you have a HV. they should be ones attached to your gp surgery, who should be able to help you with all this.

about the nightime stuff, make sure u really do put everything in. with dd2 if she is sick, then we have to clean her up, get her bedding clean, settle her down, make sure she is well and its just another vomiting episode, all in all can take about an hour, and this can happen several times in a week. add to that reapplying of creams, inhalors if dd1 asthma is playing up. well you get the idea. so if your son is up during the night, or is hard to settle, then make sure you stress how long it takes to get him into bed/stay in bed.

sorry for rambling. hope you get some success.

Hopefully when we reapply chocol8 we'll get Marge on a Tuesday approving our forms not Celia on a Friday, or perhaps we'll be pulled out the hat first next time!

Ohhhhhh, i'm looking forward to Monday mornings phonecall already!

When do you need to reapply Thomcat? could you ust write to tell them the situation has changed since your dd has gotton older? how old is she now?

Is this where I was supposed to post about Direct Payments? I know we've discussed it in passing on other threads so a search might be worth it.
Anyway, what you do is ask for (or get someone to ask for) an assessment from Soc Svs for your DD/DS. You should also request a carer's assessment although I found this a bit of a waste of time. Once the assessment has been agreed at X hours (fingers crossed) you can opt to receive those hours as Direct Payments. There is NO extra qualification needed to get DPs or any other aspect of assessment. If you are given hours of respite by Soc Svs you are ENTITLED to get them as Direct Payments. The alternatives usually are that you get a service from Soc Svs, possibly from a respite service or through agency staff, which you may well have to go on a waiting list to get.
The downside of DPs is that YOU have to become an employer. However, there should be an organisation or someone independent of Soc Svs to help you administer all of this and its just a matter of keeping on top of the paperwork (ha ha, mine's a mess). That's it. Get the hours, request them as DPs and away you go.
I worried a bit about the whole thing of getting anything from Soc Svs and felt guilty as we are better off than many other people. However, a friend (more than one in fact) said that all they can do is make their assessment, its up to them. Also, all our children will end up in the Soc Svs system once education is over so the sooner you get into the system the better AND its our children's entitlement, not ours.
What you can do with DPs is very flexible, e.g. I pay someone to look after DD while I take DS swimming and trampolining, they don't have to work direct with the child with disabilty/SN.

Misdee, i have to reapply becasue when i first filled out the forms Lottie was 3 months old. As she'll be 3 at the end of this year her SN's are more apparent. She needs help with getting around etc now. I've only ever received low rate for her whereas now as she's not walking still she automatically gets high rate. Even though some of her peers with DS have been getting the Medium rate since they were babies. It's such an unfair system, or certainly seems so in muy experience and that of the other mothers like Chocol8 etc.

I really hope you get the middle/high rate this time. u should get mobility componant now as well shouldnt you?

it is a very unfair system, you may know that we had to fight for 7 months (plus two refusals before hand) before they awarded dh high mobility and low rate care. It seems so unfair to us, that our dd's are on high rate care for a 'less serious' condition. not that i'm gonna turn it down, as they cost me a fortune in specialist clothes and laundry.

Thomcat - did you manage to call and complain this morning, or you did and that is why you said that you have to reapply?

Mrsforgetful - I did as I was told and emailed you through contact another talker but am not sure you have recieved it, or you may have deleted it without realising (like I have done!).
Shall I do it again just for luck? I think my time is running out as you only get 28 days to appeal. x

Chocol8, I didn't ring and complain because tbh they are reviewing my case as she's approaching her 3rd birthday. Although I'm upset at the lottery that is the DLA there seems little point in complaining that others got a highter rate than I was getting. But believe me when I say that we WILL be getting the high rate now. Purely on principle and for the recognition that other mothers whose children have DS and are walking are getting high to med rate now.
We Will be getting high rate, no matter what, I'll ring every day, write and take a week off work and camp outside if I have to.
Once i get the high rate recognition also believe that we WILL be getting the blue disable parking badge and we'll have it until she's running around and happy on her two little legs.
I hope I don't have to fight but i'm so ready to!

Go for it Thomcat......can I bottle your determination and take it to my appeal next week?

It will be 8 months and 24 days from the date of application.

I don't see how they could refuse Thomcat, and as Luckymum says - go for it! It's your entitlement and you damn well deserve it.

How about this...I just called the DLA to find out which year I will receive the copy of my original forms. I was then put through to the dept who do what they call "reconsideration" which is the stage prior to appeal (which as Luckymum says can take a "little while"!) Bare in mind that in the refusal letter you are told to get form GL24 to appeal - nothing about the stage in between.

The lady was very nice and very helpful and read to me why he had been refused DLA, apparently: He is responding well to medication and is alot calmer (only when he's on it) His speech and academic work is good (true). He plays well in games and p.e. (not games in the playground, but he is now allowed to do p.e. where as they couldn't cope with him last year, before Ritalin). He has good self-care (bollocks), good road safety which is age appropriate (utter bollocks) and that he self medicates!!!!!!! What the feck????

Do they employ an reporter to make this stuff up? Where did THAT one come from? I was utterly astounded that they topped it all of with "he self medicates"!!!
He's 6 but able to administer Ritalin, I ask you!

The lady wrote a short reply to their report and said that I should submit evidence to support what I said. I am supplying a school diary from last year when his behaviour was absolutely appalling. A copy of my Family Fund form and the Consultants report of when she first met Carrick last June. I think they should do the trick. Added to that that he self harms and is seeing a psychologist.

He won't get mobility, but I didn't expect him to. All I would like is what I am entitled to and the acknowledgement that I need the extra help.

I am off to cook tea and ponder further their comments...unbelievable. Good luck with your appeal next week Luckymum, let's hope Thomcat's optimism and the first bit of your nickname help. Please let us know how you get on. xx

TC- with regards mobility (or care come to that) are there any court cases/tribunals involving DS? When I rang the DLA "helpline" I was told you couldn't get mobility unless you are physically unable to walk (bollocks). There has been a court case involving severe autism so I quoted that in the any other info bit and asked them to take that into consideration when looking at our case- we then got higher rate mobility without having to appeal.