DLA eligibility? What rate??

FigandMaple

Hi I have recently made a dla claim for my son. He has Juvenile arthritis and uveitis. in the claim I detailed all his meds, multiple eye drops a day, injection once a week and oral steroid as well as his chronic constipation which is exacerbated by the meds. When he has uveitis flareups he can't leave the house and has to stay in all day with curtains closed and lights off.. His behaviour has of course changed, and he is up multiple times a night usually screaming with night terrors. I heard a lot about juvenile arthritis claims being turned down, I was just wondering what his chances are at getting it? I am really struggling with all the hospital appointments, dreaded injections which of course he hates, he has to sit on the potty sometimes through out the day with some breaks in between, and sometimes needs to be folded on to it as he tries to stop himself going by sitting on his bum.. Any time I go to the shops for groceries which is about 4-5 times a week because I have to carry him and the shopping and therefore can't carry much at all, my back is agony, I also have to carry him all the way to nursery which is about 2 miles each way and back, I've had to start avoiding long journeys on bus for his hospital apps and just carry him and walk as the meds are making him dizzy, car sick and brings on a headache. I am so worried about the claim because having the extra money would mean I can get a taxi and he can go to the swimming regularly. He tries to avoid going out at all I think because his legs are sore and he knows there will be times where I can't carry him and hell have to walk a little bit since he put on a bit of weight from steroids.. I am finding it hard to keep up with studies..

elsien

It's based on his needs not the diagnosis so did you read the descriptors and use those as a guide when filling in the forms?

FigandMaple

No, I had help from the welfare rights department of my local council and help from the carers centre.. I mentioned his night wakings and that he screams but I didn't specifically say night terrors. Or put it down as a condition..

Spoonie_Turtle

It sounds like you need more help than DLA alone. Does he have a social worker or occupational therapist or anyone like that who can help you with things like a wheelchair or other appropriate mobility aid for when you go out? It really sounds like his restricted mobility is hard on him and on you, as well as the other issues. (Though if he were to be awarded DLA I suppose you could possibly buy something privately if the NHS won't fund anything.) It might even help him walk a little if he knows he can then use a wheelchair or other aid when his legs hurt too much. Anyway, I know that's a bit off-topic but it's just a thought.

FigandMaple

I am waiting for his next rheumatology appointment and this is exactly what I am going to ask! I spoke to a family with a young girl, younger than my son and they has this heavy duty looking pram. Thank you!!

Spoonie_Turtle

FigandMaple wrote: »

I am waiting for his next rheumatology appointment and this is exactly what I am going to ask! I spoke to a family with a young girl, younger than my son and they has this heavy duty looking pram. Thank you!!

Oh I'm glad to hear that. Honestly, an appropriate mobility aid can be life-changing - for him and for you. And if you are able to have OT involvement (or a social worker, or anyone else who could refer you to OT) they may be able to suggest aids or adaptations around the home to help you both. You may need to push for it but I am sure any such help will be well worth the effort.

[And if you do get a wheelchair, whatever it looks like, you're entitled to use the wheelchair space on a bus and not have to fold it up if he needs to stay in it. Of course if he doesn't need to then it's courteous to leave the space but just so you know, in case you still do some journeys on the bus.]

kingfisherblue

DLA is based on the additional needs that your son has compared to other children. It seems that he has considerable needs, both for care and mobility, so hopefully your claim will be successful. Your local council may be able to help with transport, especially if this is the nearest nursery for his needs. I'm not sure if they help at nursery age or whether you will have to wait until he is at school though.

In my area, for a wheelchair you have to go through your GP to the Wheelchair Assessment Unit (for children as well as adults). At nursery age, he may be offered a Major Buggy or similar, unless he is assessed as specifically needing a children's wheelchair. As he grows, he is likely to become eligible for a wheelchair based on what you have said.

Your local council may have an occupational therapist - they can help if you need any adaptations to your home. For example, if using stairs is difficult because of mobility issues, a downstairs toilet might be installed. If you are in social housing, they might recommend that you move to a different house that already has any adaptations needed.

OTs can also help the nursery, and later the school, with aaptations within the classroom. For example, your son might need a writing slope, special seating, or pencil grips.

You might want to apply for a Blue badge, even if you don't drive. If anyone else drives your son anywhere, it can be used in their car. If your son is granted high rate mobility (only possible if aged 3 or over), it should be automatic acceptance. otherwise, you can still apply, but may have to jump through a few hoops.

Your son's rheumatologist should be able to help with the injections - maybe a referral to a play therapist, for example. Play therapists can help children to accept unpleasant medical procedures, though it may take some time and they are not always successful. There might also be the possibility of hydrotherapy to help your son, but this is not always readily available.

Check to see if there is a Carer's centre in your area - they may be able to give emotional and practical support. You might also want to join a support group for parents of children with Juvenile Arthritis. They can give more targeted advice and help.