Severe Learning Disabilities

peainapod

We were told back at the start of July that my almost 19 month old has severe learning disabilities (and it looks like she's got autism too, we'll know more about that after her first visit to the social communication clinic). She doesn't walk, can't talk, and although she is a happy baby she has minimal understanding of what's going on (hoping this will change), she's still in nappies and will be for a long time to come according to the doctor, she's almost 19 months but according to the docs report is only 8-9 months mentally / developmentally.
I was just wondering when I can get DLA for her. I've got a million and one appointments to get her to over the next month, will I have to wait ?
I did ask a while ago about it all but this was not long after I find out and I couldn't really deal with it, but I'm ready to sort everything out now.
I've been on the autism forum which seems great.
Thanks

MrsManda

As far as I understand it you can apply for your child at any time providing they need more help/supervision than other children of the same age. The only restriction is that DLA is not paid for children under the age of 3 months.

You don't need a diagnosis to claim for DLA as they focus on the care and mobility needs rather than the diagnosis though they do pay attention to prognosis.

I would start applying now if you've got the energy.
http://www.direct.gov.uk/en/MoneyTaxAndBenefits/BenefitsTaxCreditsAndOtherSupport/Disabledpeople/DG_10011816

concerned43

As you are going for DLA for the first time, I would make an appointment with your local welfare officer or CAB to help fill out the form for you.

peainapod

Thanks guys, I think I'll make an appointment for some help thanks concerned43, I just thought they'd need a shed load of paperwork off all the doctors etc ? I can start the claim without all this ?

Absolutely

peainapod wrote: »

Thanks guys, I think I'll make an appointment for some help thanks concerned43, I just thought they'd need a shed load of paperwork off all the doctors etc ? I can start the claim without all this ?

Yes, you can start your claim without any paperwork off the doctors. I have 2 boys who I have claimed DLA for since they were 18 months old (might have been earlier actually).

The link provided above by MrsManda is good. It explains that you can claim because your child has care needs over and above a 'normal' child of the same age. You can't claim for the mobility component of DLA until your child is 3 years old.

My social worker helped me with my initial claim.

To give you a bit of hope, both my boys (twins) couldn't walk or talk at 19 months old. I was told they would be in nappies forever! It took time and effort but they did eventually hit milestones: they sat up unaided, they eventually talked, and both were out of nappies by age 3.5.

They are still special needs kids, never got a diagnosis but they are happy.

Good luck.

concerned43

Phone for a pack ASAP as it can take up to 2 weeks to get the pack, in the meantime book an appointment with an advisor as it can take up to 8 weeks to get an appointment these days!!
You do not need any evidence with your application as the DLA team will write to all involved anyway. Just let those supporting your application that you will be applying for DLA and to expect a letter from the DLA.

SingleSue

Absolutely wrote: »

Yes, you can start your claim without any paperwork off the doctors. I have 2 boys who I have claimed DLA for since they were 18 months old (might have been earlier actually).

The link provided above by MrsManda is good. It explains that you can claim because your child has care needs over and above a 'normal' child of the same age. You can't claim for the mobility component of DLA until your child is 3 years old.

My social worker helped me with my initial claim.

To give you a bit of hope, both my boys (twins) couldn't walk or talk at 19 months old. I was told they would be in nappies forever! It took time and effort but they did eventually hit milestones: they sat up unaided, they eventually talked, and both were out of nappies by age 3.5.

They are still special needs kids, never got a diagnosis but they are happy.

Good luck.

I second this post, my youngest was also not walking or talking at 19 months and the world was a very confusing and strange place to him.

He is now 13 and a half, he finally went full time at school towards the end of year 6, out of nappies at age 9 and can talk the hind leg off a donkey (as long as it is about Apple products or Star Wars ), not bad when you consider he was completely non verbal at age 5.

He is also in a main stream high school, albeit with a huge amount of support...something else we were always told he would not be able to achieve but we were very lucky in that we found an absolutely excellent primary school (eventually, his first primary school was err....not very good) who did everything in their power to make him feel settled and happy and who refused to give up on him, even when things looked completely hopeless (hence the half days until he was 11). All of their measures were then copied by his high school to ensure a slow but continued improvement.

He does have a diagnosis (well several!) of complex autism, severe asthma, bowel disorder, multiple food allergies, multiple food intolerances and probable EDS/def hypermobility syndrome and another possible of Irlens (we seem to add to the list every year, this is his new one for this year)

I can't actually remember how old he was when we first claimed DLA for him but I think he was over 2.

kingfisherblue

My son hs severe disabilities and has received HRC since he was three months old and HRM since he was 3 years old. At age 8, he was given an indefinite award fo both HRC and HRM.

He has multiple diagnosis, including Down's syndrome, several digestive conditions (mostly quite rare, including one which only affects 1 person in 40,000 and another for which the hospital couldn't give statistics), hypermobile joints, asthma, hypothyroidism, doubly incontinent, wheelchair user, and several others.

Living without a diagnosis is quite difficult for some of my friends. Contact a Family can put you in touch with other families if you feel you need this. They also have a factsheet on this, applying for DLA, and many other things that you might find helpful.

https://www.cafamily.org.uk

SuziQ

My youngest is on the Autism spectrum, but at the same age as yours he was very similar to your child as you've described things. He couldn't bend in the middle, let alone sit, and we were told he would never walk, talk etc. He had a lot of therapy-portage, occupational therapy, physiotherapy-and it was a hard slog, but he did walk-with difficulty at first-he had to be strapped into a strange chair contraption on the floor for a few months to stretch his tendons etc, then he was strapped into a standing frame for increasing amounts of time a day to build up his muscles. To cut a VERY long story short, he is now in a mainstream school, would talk the hind legs off a donkey and is doing extremely well, although he still needs a lot of supervision and support. Our major difficulty has been getting SALT for him, as for a while there were no therapists here and even once they employed some they were snowed under, so we had to pay privately, which would have been a huge burden without DLA.

I found this site a tremendous help in understanding how the forms need to be completed-I have always completed them on my own.

http://www.cerebra.org.uk/SiteCollectionDocuments/Books/dla_guide.pdf

I hope that helps and I hope your little one exceeds all predictions, as my son did!

peainapod

Thanks for all the help guys, I rang the benefits enquiry line and told them and they've sent a pack out to me, I'll wait until it comes, I'll have a look at the site SuziQ to see how to fill it but if it takes 8 weeks I'll book an appointment now just in case ! thanks kingfisherblue I hope I find one around my area because I would love to talk to people who are in or have been in the same situation.
Thanks again guys for all the info on DLA, glad I posted now because I thought I wouldn't be able to claim for anything until she was 2 or 3 when we had more paper work and more info.
Thank you !

SuziQ

peainapod-just so that you know, they often contact your GP rather than the child's specialist (at least in our case.) My son rarely goes to the GP- he's been 3 times in 9 years- so I made an appointment to talk to the GP, tell him what was happening and what care needs he had. My GP rang the second time to chat to me about it, the third time they didn't contact him. Some GPs send back no info and it could jeopardise your case. There is also a page that you can get someone to fill in for you that knows your child and the care needs-eg a therapist, your Health Visitor. As long as you complete the form by the date you are given, the DLA is backdated to the day you requested the forms. I found it easier to complete them online, and then print off, as it kept them neat and you automatically can keep a copy for future reference then. If you don't complete it online, maake sure you keep a copy-they can go missing, and it will help if you have to appeal, or for the next time you apply. I keep a diary of my son's needs-makes it so much easier to fill the forms out.

Decisions seem to be taking a while at the moment. Good luck!