DLA for your child

[suzi]

Hi Everyone,
Just thought i'd make everyone aware of the fact that they can claim DLA for their type 1 diabetic child. Some of you may think "i'm not scounging off the goverment!" but your child is entitled to it and i'm sure as parents youv'e paid tax all your working lives.( it is not means tested)
When i 1st claimed for Andrew i was denied,but knew of other parents who were in receipt, so i appealled the 1st decission, won but only minimal amount, i was still unhappy, so made a phone call and was finally granted full rate,
Andrew gets low care for help with getting around and medium rate for help with personnal care. I also applied for and was granted a carers allowence, as i was unable to continue working as Andrew had such a bad period of illness with his diabetes that i had to take a lot of time off and out of work. But can still work up to 16 hrs a week, but only work 5hrs a week.
Any questions? i'd be glad to answer if i can
Suzi x

 

[Firefly]

I think it's important that everyone knows this is an entitlement and also that if you are in receipt of Working Tax Credit this also adds a Disabled Child Element to your payments too, so another £2540 per year although on your allowance.

However, I'd be really interested to hear of anyones experiences of anyone receiving DLA when their child reaches 16. As far as I am concerned the additional costs and support doesn't disappear overnight on 16th birthday like the payments do and with my son, a recent school trip has made me realise just how much adult support and intervention he still needs over and above that of his peers.

This date for us, is approaching and although I've heard of one parent having success in her application for her son, as her Clinical Nurse Specialist completed the DLA paperwork, I think it would be valuable to share experiences.

I was lucky enough to receive DLA at the first time of asking when my son was diagnosed and I'd be happy to offer help to others with the onerous task of filling those endless forms in.

 

[Katharine]

Steven's DLA was continued after he turned 16 but the money is paid into his account.

 

[Firefly]

Thanks for that Katherine. And rightly so too.

Did you complete the forms yourself or have help from Steven's diabetes team?

 

[Katharine]

I did them myself.

If you go through all the things you do for your child each hour of the day, day of the week, monthly and annually you can see how they simply can't do it without help.

Eg Giving bs tests, insulin am.
Making breakfast.
supervising bs/insulin/meals/carb counting and protein estimations.
low carb baking/weekly bs analysis/ insulin calculator adjustments.
medication stock and ordering/collecting.
trips to clinics/eye exams/ foot exams.
holiday/overnight trip safety netting.
middle of the night bs testing.
dealing with sick days.

 

[Firefly]

I totally agree Katherine which leads me to think it's all about HOW you fill out the forms.

Having been told by several other parents that DLA is not available post 16 for diabetes I fail to see that if I filled the form out as I did last year that they could say he didn't need support. He clearly cannot manage without adult intervention at 16. OK it's less than it was at 14, but is still substantial in comparison to any other 16yr old. He maintains excellent health and has a Hba1c of 5.6 as he's a County Athlete and County Rugby player but wouldn't do any of this without me to run behind him and stand on the track and touchline with flapjack, energy drinks and monitor.

Breaking down the support into almost each hour of the day seems to be key to getting DLA. I think my original application ran into about 20 pages.

 

[suzi]

Hi Firefly
Your so right it is all about how you fill in the forms, and wording is also a key factor.When Andrew was 1st disgnosed at 7 i spent hours filling out forms, got refused, spent more hours and ink, then phone calls, finally after 17 months he was finally awarded (though only backdated 3 months!!! :? ) I was emotionally drained. Although it has to be renewed yearly, at least i know what im doing now, though not looking forward to the challange in 6 yrs time and that form!! The fact is, it is a condition they'll have for life, and even in adulthood it can be difficult to manage, but whilst our children are at home and still having difficulties in our care they should be intitled to DLA.
Suzi x

 

[poppy58]

Hi can anyone help out there My son was diagnosed with type 1 two years ago, and has been unwell most of the time, my husband is also Type 1, I have had to give up work as Ross has been in hospital a lot and also has had alot of time of school, I am often up tended to highs (ketone testing through the night or lows and also lows for my husband, it often feels like a full time job! I have only registerd today and ob browsing I noyiced some familyes are claiming DLA, what is that and do you think I would be eligable/

 

[Katharine]

Poppy,

It is a full time job!

What age is your son?

The DLA form is all about what sort of stuff you have to do personally or help your child with personally to have them "normalise" their life.

 

[Traceybj]

My son was 16 in may and his DLA was stopped. I applied for it again got refused, I have appealed and have just received a letter today saying I'm getting a home visit on Tuesday which I have no clue as to what this is for. Anyone got any advice please. I can't believe once brad turned 16 it was oh he will be ok now, he was taken into hospital 3 weeks ago he was that I'll

 

[jgreen2711]

hi everyone my 5 yr old daughter has type 1, we found out about 2 months ago and i was just recently told we could claim DLA can antone help me in filling out the form pls would be greatly appreciated.

 

[stoney]

hi everyone my 5 yr old daughter has type 1, we found out about 2 months ago and i was just recently told we could claim DLA can antone help me in filling out the form pls would be greatly appreciated.

Hi There

Our DSN kindly went through our form with us and have been claiming since James was 3 he is now 14 and was told this would end when 16 so I will try and reclaim then so here's hoping. I have taken a photocopy of his first claim and subsequent others along the way. I could maybe send you a copy if you would like to pm me with your address otherwise not sure how to get this info to you.

 

[jgreen2711]

i cant seem to pm, i think i maye because i only joined today.x

 

[daisy1]

I think you need 5 posts to be able to PM. Have a look round the forum and I'm sure you can find enough places where you can post something.

 

[jgreen2711]

I think you need 5 posts to be able to PM. Have a look round the forum and I'm sure you can find enough places where you can post something.

thanks i will have a look around.x

 

[char nd jay]

we applied for courtney who is 2 and was dignosed in march this year she was award middle rate care , was told to expect high rate as i hardly sleep with testing her n what not bt i wqas happy with middle rate it helps pay for her trips to the hospital and extra things for her diabeaties like gluco tabs n stuff like that!
we got adviced to write stuff like ..
testing
wash and dry cournteys hands to make sure her fingers are clean and dry- 3 mins
warm hands/feet up if cold b4 testing-5mins
pt clean needle in lanchet and prime ready fro use -2 mins
place new clean testing strip in 1 min
prick finger and sqweeze for blood 1 min
wait for testing result 1 min
wash and dry hands/feet again to make sure area is clean again to stop infection _ 3 mins

same wit injections and explain how we have to wake her up get her out of bed then settle her down again
same with hypos how we have to make her eat take gluco gel and stay with her till her suger levels reach normal goood levels then settle her again n list times

also rember your ment to base the form on your childs worst day soo far

like courtney had a fit b4 so we pt in her hospital trip the amberlance etc

hope this can help xx

 

[rockin_plumber]

We also got awarded middle care rate for Joshua.
Just dont let the forms put you off, they may take a while!!!
And base it on your worst day as advised...

it helps pay for her trips to the hospital and extra things for her diabeaties like gluco tabs n stuff like that!

We sent a request to our doctor regarding gluco-tabs and they got added to Joshua's repeat prescription so may be worth a try.

 

[devera67]

hi my son was diagnosed 2 months ago and my nurse helped me fill my form s out me and my husband work 16 hour a week each we claim working tax and child tax can any one please let us know what we can claim for my son he has type 1 diabetes age 23 month s now thanks x

 

[elainechi]

you can claim after 3 months of dx.request a paper form and enlist with you paediatric diabetic nurse to help you fill it in .there are a few sites you can google to help too. your child tax credits will go up as well.your child will be labelled disabled or severely disabled but do not get upset by that phrase. good luck.its not easy to fill in x

 

[dot]

And base it on your worst day as advised...
]

Agree - our DSN said to write down the diabetic parent's day from hell on the form. Get middle rate for my 14 year old. No trouble with it at all thankfully.

Luckily the day from hell hasn't happened yet :wink: