help - DLA turned down

[chocjunkie]

DD's application for DLA has been turned down
She is 3.8, has load of autistic traits (we will have the ADOS shortly), her s&l is severely delayed/disordered (she is 1.5-2 years behind). she does not underdstand a lot and fails to communicate her basic needs. not toilet trained, taking her out is a nightmare due to her complete lack of danger awareness and constant urge to run into the road or to have massive trantrums.
she failed every single target of her IEP. EP assessed her and recommended SS (!!!) as he does not think DD will be able to cope in MS (not even with intense 1:1 support), nursery applied for a statement (still in process). DD's needs are decribed in every single report as severe and complex. I send in all reports from various professionals I had in with her application. I followed the cerebra guide to the letter and outlined in great detail all of DD's problems. I stressed for every point as to how much DD is different from an NT child of the same age and why her care is over and above that of an average child. I typed wrote almost 30 pages. It took me almost 6 month to fill in the blardy form because I could not do it any quicker between going to work, dragging DD to appointments, spending my night awake with her and dealing with a baby on top. I started private SALT and ABA a while back with money borrowed from fiends and family (I felt so so so sure we would get DLA and I would be able to pay the money back - now I have to stop both and I am in debt). on top of everything, I have been doing the ABA hours myself (cannot afford tutors and do not have any family). We get pretty much nothing on the NHS other than monthly useless SALT (and I had to fight for this a year as well incl a big complain to PALS). I am completely alone with everything with no support from anybody. for every wee bit support DD gets I had to fight tooth and nail and I am sick and tired of struggling. I am also going through a marriage breakdown on top. I am at breaking point now and was just waiting for DLA to make DD's and my life a wee bit easier. and now? whoever read the application must have been a fucking idiot or a fucking bastard. well probably it was an idiot of a bastard (sorry, I am so livid). I was fully expecting HRC and maybe even mobilty. and now I get a big fat zero.

I will ask for reconsideration but just wondered if I should put any other evidence in (even though I sent everything already). or should I rewrite parts of it (though I put every thing down alreay). I just want to hammer this DLA because we desperatly need it.

I just can't understand that we have been turned down. is this standard these days without dx?

any advise would be much appreciated and sorry for the typos. I drowned my anger in .

phone them and ask for the claim to be looked at again and then send in an essay all about her needs and get her nursery to do another report out lining everything again. i did this for ds and got awarded with in weeks, infact days of them getting extra info, someone different will look at your claim again. good luck

Aw Choc you need to appeal hon. And soon! you only get 15 days or something ridiculous (even tho they can spend months giving u a decision)
Describe a day with your daughter, how it is for you as a family, a bit like what you've said above...
They often say no 1st time hoping you'll just slink away quietly, especially now they're cracking down so hard (bastard Tory's!)
Get your appeal in, wait for them to respond, in the meantime go to CAB. Don't know where u are but here they've just been given tonne of money specifically for disabled benefit claimants.

Don't give up!!

I had my eldest's dropped to LRM couple of yrs back, took 2 appeals and one tribunal to get it overturned back to HRM and they also had to pay me all the back dated payments of £28 per week!

I love that your 'fiends' lend you money haha i could do with some fiends like that Only joking, just made me chuckle! Have another on me!

somebody on here once linked to the "guide" that the DWP use to make their decisions. It lists all the criterea for the various levels.
If you can get hold of the guidlines write askign them to reconsider with bullet points using clear examples to explain exactly how your dd meets the criterea.
If still no luck then appeal.

When i asked them to reconsider (was several yrs ago now) i incuded a 48 hr diary giving a direct comparison between ds2's needs & an NT child of a similar age.
Good luck.

Lol, unpaid, I know my 'fiends' are lovely. amazing what a difference some makes. maybe I should send a bottle in to the DLA bastard when I ask them to look at the claim again!
I will definately ask for reconsideration and probably also ask CAB for help. but it just makes me so incredibly upset and angry. it just does not make sense :(

No Choc it never make sense!
they lowered my boys on the basis that some tw*t of a doctor who we never met or knew (even tho he was supposed to come and assess my boy apparently) wrote "This child makes a conscious decision not to walk"!!!! Soooo therefore presumably when he throws himself to the ground kicking and screaming in fear and anxiety i just pick him up and sling him over my shoulder- he's 5'10" and weighs more than me!!!
And this was even though they decided he needed HRC component cos he needed 24/7 supervision and help at all times but with the mobility he 'only needed supervision in unfamiliar places'. Huh???
Work that one out if you can. I couldn't!

You don't give up girl. don't let the bastards win!
Let us know here how you get on.

They turned down both my girls. We had to go all the way to tribunal before awarded. Dd2 was turned down flat, asked for reconsideration and sent more info and then awarded hrc.
Tbh mobility is near on impossible under five unless there is a physical disability

DWP contacted DD's paed. Paed is not really useful and I start to wonder if this could have played a role in the refusal. the paed is useless and not very concerned about DD; it is nursery, EP and Salt who pushed for ADOS, and statutory assessment (and myself of course).
Do you know if I can ask for a copy of the paed's letter from the DWP?

yes, you can, you have the right to see any report sent in. i asked for a copy of the schools report and got it sent to me, they will also fax it to you if you have a fax machine and can prove you are stood next to it, ie they will phone you at work.

Yes the word locally is that every child with dx has been turned down first time. So assume it is just a way to filter out applications / put you off and assume this time they will read the evidence. If you have a carers resource or similar locally they often help fill out the forms and know what you need to put in each box

sorry that should have been withOUT dx

Lisad
I got HRM for both my boys aged 3. Both walk. It is if they present a danger to themselves and/or others and need someone with them.
I also worked voluntarily for Mencap as a family advisor on DLA for a short while a few years ago and got HRC and M for all my clients, even those turned down previously, so when they say you can't have HRM cos they walk, it's a cop out. See the Social Security act (damn forgot the year) but it says it somewhere win there...quite clearly that if they qualify for HRC because they are so severely physically or mentally disabled...they qualify for HRM (something like that)

Choc, I always get all the specialists and others involved to send me their reports and photocopy them and send them in together so the DLA can't say they've not had them or lost them etc.

Dd2 wasn't three when we applied for DLA but I'm too worried to apply for mobility part now as they said it may change her care rates and that pays for her ridingtherapy and other stuff she needs.

When it asked for other information (a large blank page) did you fill it? The cerebra book suggested that you fill it with a daily hour by hour timetable of what your child is doing and the support you need to give to emphasize the amount of support they require ongoing throughout the day.

EG
7.00 - assisting and encouraging to get dressed, washed, helping to get teeth brushed
7.30 - assisting and encouraging and refocussing x to eat breakfast
7.45 - assisting and encouraging x to put shoes and coat on for school

Plus include the other ongoing bits like toileting, helping them stay on track when walking, refocussing them so they don't walk into people etc etc etc.

From what I have read I took it that they often look at this page first, then look at the rest for more clarification / details on assistance your child needs, so it is a really important page.

glitch, I had put some other staff on this page and did not inlude a diary but will write one this week.

I just wondered if there is any point talk to somebody at the DWP to get some more details as to why they turned us down before I fire off my request for a reconsideration? or is this only a waste of time?

and thanks for all your posts - feeling much better this morning and determined to get this sorted (even if it means going to tribunal)!

Lisad that is total BS they simply cannot say in one hand that your daughter needs HRC but then threaten to have this withdrawn if you then get mobility for her!
Oh, so what, has she suddenly got better and doesnt need HRC?
What nonsense. Don't believe a word of it, they do this to put you off and the chances are that on HRC she will qualify for mobility too (should be HRM due to her needs outside the home).
Go for it!

Just received my letter to say that DD3s DLA is being stopped.

She is 17 years old. Has been ill for 3 years and is basically housebound. We sent a claim in 2 years ago and were awarded highest rate mobility and middle rate care. Things got a lot worse, but have now levelled out to just about where it was when we first applied. How can a housebound 17 year old not be eligible for DLA on any rate? Apparently, she only "prefers" to have someone with her when she is out, she doesnt need someone! SHe falls!!!! There is no way she can go outside our door without me taking her in the car. Most days she cannot walk around the house without leaning heavily on the furniture, so how on earth can she not need mobility allowance?
I will be making some phone calls next week to see where I can go from here.

They are being really tough .first ds3 lost his HRm despite reports saying in a day 200 m was all he could mange in odd gait and slowly .Then he physically to wiped luckily we did get it over turned

And funnies laugh was mine was refused and had to appeal Lisa asd123 will know why that is funny ; and my dr wrote snotty letter asking what part of SCI unable to walk , per,mant wheelchair user did they not understand .I won