13 yr old daughter Denied DLA

[Fiona30ni]

Hi
My daughter Rebecca was diagnosed 2 years ago with type 1. She was awarded high rate care in her first year and the year following was reduced to Middle rate care.
We were due for a renewal and I completed the forms as previous years and received a letter today that she was turned down totally. The decision maker did not even contact any medial professionals!! I have asked for a re consideration as my daughter still needs constant reminding to take her insulin and has difficulty working out her carbs due to her difficulty in understanding and the calculations. i also have to remind her ever night to take her 24 hour insulin.
Has anyone any previous experience or advice please.

Fiona

 

[Robinredbreast]

Hello Fiona

All I know of the care allowance for a child is, my friends son was diagnosed with type 1 at age 4,and this year, in January,when he reached the age of 12, the allowance stopped, i because 12 is the cut off point, as they are now at an age when they become more responsible and more independent for their own care in treating their diabetes. I think it can be more difficult with teenagers, with their hormones flying everywhere and wanting to be just 'normal' like their friends. Good luck with it all. With best wishes.,

Good advice from Heathenlass about appealing

 

[Heathenlass]

Hi
My daughter Rebecca was diagnosed 2 years ago with type 1. She was awarded high rate care in her first year and the year following was reduced to Middle rate care.
We were due for a renewal and I completed the forms as previous years and received a letter today that she was turned down totally. The decision maker did not even contact any medial professionals!! I have asked for a re consideration as my daughter still needs constant reminding to take her insulin and has difficulty working out her carbs due to her difficulty in understanding and the calculations. i also have to remind her ever night to take her 24 hour insulin.
Has anyone any previous experience or advice please.

Fiona

Hi Fiona,
I've heard of this happening a lot lately Sadly, they decide that a child of your daughter's age is able to manage their diabetes alone, and "therefore" no longer needing care. Clearly, this is not the case. What other parents have done is appeal immediately, and get the backing of your GP and diabetes team on board. The good news is most parents have won on appeal.

I'm not a parent, and haven't had first hand experience of this process, but do have friends that have . I'm sure others better qualified than I am will have more advice too

Signy

 

[Adele99]

When you apply for DLA or any health related benefit, it's best for you to supply the medical back up info to support your claim. This could be from your daughters school detailing the help she needs while at school, or from your GP. Rather than rely on the DWP to do it for you.

When claiming DLA for care needs you need to paint a picture for the person reading it to explain why your daughter has care needs above the needs of any other child this age. Bearing in mind other 12 year olds will be successfully managing their insulin on their own by this age. Unless you can explain this perhaps giving some examples , the person reading your form may not be able to visualise your daughters care needs.

I f you've received their statement of reasons for why your claim was refused, read it carefully and then either ask for a reconsideration or appeal the decision if you feel they are wrong. You can get help from CAB or a Welfare officer at your local council to do this. There is likely to be a time limit for you to ask for RC or to appeal so don't miss it.

 

[Fiona30ni]

Hi Adele,
I sent everything I had including physiologist report which stated clearly that my daughter needed help. They said the decision was made on this report so obviously they can't read lol
I have asked for a reconsideration and my GP and specialist are giving me letters a piece. I described exactly in the form why my daughter requires help but again I believe they haven't read it lol
Diabetes uk advised me to keep a dairy which is brill as when you time it and write it down it's more than you think. Been up now from 11.30 trying to treat a hypo. Took until 12.25pm to get bloods to 4.6 and I still had to fight with her to eat a snack. Nightmare but hopefully the drs letters will stand for something

 

[kesun]

DLA is meant to make up for the additional daily living costs that disability brings. The DWP probably takes the view that although your daughter still needs some help with managing her diabetes, the help doesn't entail extra cost to you.

 

[Fiona30ni]

Kesun you should not voice your opinion if you do not know the exact details of the situation. People have to give up work to monitor their children is that not an expense in itself. I take it you have never experience a child with diabetes yourself?

 

[Beshlie]

My husband was turned down for DLA and, along with a support worker made an appeal and won it, so don't give up. He isn't diabetic, it was for other reasons, but lifelong illness just the same.

Good luck.

 

[kesun]

Kesun you should not voice your opinion if you do not know the exact details of the situation. People have to give up work to monitor their children is that not an expense in itself. I take it you have never experience a child with diabetes yourself?

Where did I voice my opinion? I stated my understanding that the DWP makes the decision based on the extra expense that they judge your disability is likely to incur. I don't work at the DWP or form their policies.

Since you ask, no, my child doesn't have diabetes. She is on higher rate DLA, so I have experience of the DLA application paperwork and process.

 

[Fiona30ni]

Where did I voice my opinion? I stated my understanding that the DWP makes the decision based on the extra expense that they judge your disability is likely to incur. I don't work at the DWP or form their policies.

Since you ask, no, my child doesn't have diabetes. She is on higher rate DLA, so I have experience of the DLA application paperwork and process.

Where does it state anything about expenses???


Sent from the Diabetes Forum App

 

[kesun]

Where does it state anything about expenses???


Sent from the Diabetes Forum App

Fiona, I don't want to get into a fight. No, the guidelines don't say this. I was trying to share some of the more in-depth knowledge I've gained from talking to other parents and professionals involved with child disability benefits, but I'm happy withdraw from the discussion since I'm clearly causing you to take offence.

 

[ladybird64]

I have an adult daughter who receives DLA high rate for both the care and mobility components so also have some knowledge of this benefit, soon to become PIP.
Fiona, DLA did used to be given to "help with the additional expense incurred while caring for a child with a disability". I think the wording has changed slightly but the criteria remains more or less the same.
Having said all that, I would certainly agree that you should appeal the decision. It is a slow process because they hope you'll give up and clear off so you need plenty of patience. You have supplementary evidence that needs to be taken into consideration, they're not allowed to ignore that.

Good luck, hope you get a good result.

 

[Jan68]

Hi fiona we were refused dla after the first year. I appealed and was turned down as at 14 she should be independent! I went to the hearing on Tuesday and although daunting by myself it wss ok. They don't understand about the condition or the care and attention a child needs to ensure they maintain good diabetes care. It was a positive outcome. I would suggest you appeal as it is easier to talk through your situation than making a judgement on written evidence. Good luck.

Sent from the Diabetes Forum App

 

[JTL]

I would imagine in todays climate that if she's at school all day without you then they'll not see it as her needing much care or having much of a disability.

 

[Rach36]

My son was diagnosed at age 9, like yourself we got the higher rate dla at First then middle rate as he grew older. He is now 14 and we have just renewed our claim and he is still getting the middle rate!! It seems very unfair that they treat everyone differently depending on how they fill in a form the daily struggle is hard enough for them and I think teenagers find it very difficult to manage their own diabetes not to mention the usual teenage problems they all face. I would definitely appeal their decision good luck and keep up the good work all us parents of diabetic kids do to keep them safe and worry free xx

 

[Purdy pops]

My daughter was diagnosed 11 months ago when she was 11. She is 12 now. No one has ever informed us of this form or that we could apply. Could someone please tell me where I can apply. We have a daily struggle with her getting her to inject, measuring carbs, dealing with hypo's and spotting the signs of hypo's. Myself and my husband have had to leave work on many occasions to go to the school to deal with her. And the cost of getting to hospital appointments and parking all adds up

 

[phoenix]

I don't know anything from personal experience but hopefully others will reply.
In the meantime this may be of use (don't know how up to date it is)
http://www.diabetes.org.uk/How_we_help/Advocacy/Disability_Living_Allowance/

 

[fredduck1]

My daughter was diagnosed 11 months ago when she was 11. She is 12 now. No one has ever informed us of this form or that we could apply. Could someone please tell me where I can apply. We have a daily struggle with her getting her to inject, measuring carbs, dealing with hypo's and spotting the signs of hypo's. Myself and my husband have had to leave work on many occasions to go to the school to deal with her. And the cost of getting to hospital appointments and parking all adds up

Apply to the depth for work and pensions they will be able to guide you. Your diabetes nurse gave me the form but that was over 9 years ago. Have just renewed and had no problems. She has very unstable diabetes as well as chronic fatigue and ibs. Good luck

 

[diddles]

Filling in the form :
Your child is affected SEVEN days a week.
They need someone or help in new places or they get confused
They they need transport they cannot walk too far without transport
They need meds on them 24 /7
Doing jabs and blood monitoring can take 35 minutes as they struggle
Wee tests are overnight hypos can happen mornings if they're not supervised for snack night before.
What the 18 year old ignorant (unmedically trained clerk) is looking for is
1.how much support is needed and in what Way?
How long for? Example
4daily jabs plus bloods can take half hour, 7days per week.
Mood swings
Anxiety
Some get depression
Afraid to travel far
Time counts plus overnight bits and bobs.

You MUST detail EVERYTHING. There is no good reason that your child is not allowed DLA for type 1 diabetes! Your nurse should know all this!!! If she's worth her qualification she should have good knowledge. The form. MUST be approved by doctor /nurse who should pick up any omissions. My daughter is 17 and has been getting DLA for 10 years.
Please read what I've written. And please NOTE. They don't give a **** of the family it's SOLELY the impact on your child's moods. Bloods anxiety toileting depression anger towards family caused by resentment of being diabetic. Etc
Overnight and length of time
Plus SEVEN days a week 24/7
Hope this helps. X

 

[keir0ar]

Something seriously wrong with these people. I no longer receive DLA but it wasnt stopped until i was 17/18 after they had asked me a few questions and came to the conclusion that i could basically take care of myself without any financial help. They did give me the choice to appeal against it though. I hope this gets sorted and your daughter recieves what shes entitled x