DLA Decisions

[smokinaces]

Hi

DS2 is 2.5 and has EDSIII (hypermobility syndrome) with inserts, physio, occupational therapy, and hand rails. He also has food intollerances, and raynaulds.

I filled in his DLA form, applying for carers (he can walk so wont get mobility side until 5 if he were to get it at all) and got a letter today saying they have recieved his application and will let me know a decision within 8 weeks.

Someone said to me that they turn everyone down first of all, but then agree at an appeal - surely this cant be right? Is it that hard to get Carers DLA for an under 3? How long do you normally have to wait, is it normally a whole 8 weeks?

Thanks

I got higher rate care for DS when he was two (autism) after about ten days, no arguments. But it is a bit of a lottery, don't think there are many hard and fast rules. I'm still waiting to hear about the mobility aspect (he's three now) fourteen weeks and counting.

Do appeal if need be though as I do believe that being turned down is designed to put you off, especially after having filled in that nightmare of a form and caring for a disabled child. Lots of people give up but I'm told the appeal process is less stressful.

If you do get DLA for care, carers allowance is a different thing (£50 per week IIRC) which they will send you a separate form for, and don't forget to tell tax credits as you will also receive a premium if your child is entitled to DLA.

HTH

I sent off my form around 10th of July and got a decision today, middle rate; so took us 2 months but bearing in mind I sent off all reports, paed, OT, SLT, nursery, statement, GP, EP.

Got scared of the sight of the Carers form, asking too many questions about last employment (meaning too much things I need to dig into), do I or partner have property to let etc etc. And planning to return to work soon so I fear as soon as I start getting Carers benefits I have to let them know I am back to work.

I'm a novice compared to some here but we got middle rate care when DS was 2 and it didn't take too long.

Recently applied for mobility and review of care. Got letter saying decision would be within 11 weeks and 9 weeks have passed already!

They don't turn everybody down first of all. They turn some people down who believe that they supplied enough evidence to qualify them for DLA, which leads to the assertion that they turn a proportion of claims down automatically. In reality, that shouldn't be the case, but it is hard to be certain.

Some conditions are certainly harder to demonstrate care needs for than others. For example, High Functioning Autism/Aspergers. Because raw IQ tends to be above average, and the DLA decision makers are not medically trained, it can be quite hard to come to the understanding that someone with a high academic IQ can also find it very difficult to perform self-care tasks.

I can only speak from personal experience and say that I first applied in 2008 and DD1 did not have a diagnosis at that point, other than 'global developmental delay' and epilepsy. I supplied paediatrician letters as evidence, and DD1 got awarded High Rate Care around 7 weeks after they received the claim form.

You get Carers' Allowance if your child is awarded Middle Rate Care or High Rate Care. Claim within 3 months of getting the DLA award.

If you get MRC or HRC, you should also inform Tax Credits - your rate will most probably go up.

If you get turned down altogether you can ask for reconsideration, and if you are turned down on reconsideration, you can appeal.

I did read about Carers allowance (we've applied for the care part of DLA currently) but not sure if I can apply or recieve any as I work? Will look into it at a later date.

blueshark, I sent off copies of paed letters, referrals, OT and Physio plans, everything I had copies off. I also photocopied the for before I sent it off - it took me 4 weeks to complete the darn thing! I also got the statement filled in by a childrens worker specialising in additional needs (runs the aiming high project here) who has had dealings with him.

It was so hard to describe everything, I found it quite demorilising, writing down everything that we do and asking for help. In some ways you want to almost ignore the extra night wakings and carrying etc, but in other ways you want a little help and acknowledgment IYSWIM?

Thanks Lougle. Think I have been getting my terms all a little confused with care rate of DLA and carers allowance - its the DLA we're currently doing. Am new to all this!

I am hoping then with all the copies of information I sent off, and the fact the HV has agreed to write too if needed, and the nursery that we get a decision (in our favour) fairly quickly.

its not the nicest form to fill in and it was the longest I have ever done! But the money means I can get a cleaner and spend extra special time with my son and go to a museum, park, Legoland etc. Fingers crossed you will hear from them positive news since you have sent them everything they can possible need.

For me the hardest bit was estimating the minutes per day help was needed, and I read somewhere those numbers actually helps them with the decision or whether you get lower, medium or higher rate, doubt anyone looks at the depressing reports.

I agree about the minute thing, and I really worry I've cocked it up on that part - when you're used to doing something with them every day or several times a day it makes it really hard to put a time on it IYSWIM?

ok, DD1 who has HFA was turned down and again at reconsideration. 9 months later we went to appeal and got it without even needing to attend appeal (they called that morning).
DD2 who has ASD but not 100% sure on level has been turned down at first run but now awaiting further information for reconsideration. This has taken 12 weeks already.
They took 16weeks on first time with DD1!! they are pretty bad tbh

Hi Smokey
I think it is easier to get DLA awarded if your toddler has physical disabilities like your DS. Especially as you have sent back up letters regarding the care that DS receives from professionals . The DLA people are less befuddled by things physical like hypermobility and cerebral palsy than such difficult concepts as ASD and aspergers!

My DGS (with CP) received his around age 14 months just a few weeks after applying for the first time. He gets higher rate care as he needs attention during the night to make sure he is comfortable. Having said that he is relatively mildly affected. We were told he would probably be turned down first time too but to keep persevering so very pleased with the result.

We got MRC first time around - have just been awarded and DD is 3 yrs old. We used the Cerebra guide which really helped. DD has hypoxic brain injury with hypermobility, low and fluctuating muscle tone although she gets about ok so we didn't get HRC (fair enough I think!). They needed physio report so took a while to get decision - 10 weeks I think.

Tax credits went up too which has helped as I'm really struggling to work and find appropriate childcare. Not sure if we would be entitled to CA?