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Refused DLA for 13 year Old.

Discussion in 'Benefits' started by Angel_gail, Dec 3, 2012.

  1. Angel_gail

    Angel_gail · Newbie

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    Hiya Everyone

    My son has been Type 1 over 5 years now, he is almost 13 and this morning we have just had word that he will no longer recieve DLA as from his 13th Birthday (next month). I am guttered. I spent over 9 hours filling these forms in, sending every bit of evidence I could, showing them how many times I am up during the night sorting him out and they just flat out refuse him. No down grade, nothing! So how can he go from Highest care componant to nothing. If anything, he needs even more help now because he is hitting puberty, his sugar levels are raging out of control. I intend to appeal but just wondered if anyone as ever won an appeal?

    Yesterday evening, the Sugar levels were in the thirties, come midnight, we were fighting Hypos and having to wake him to give him food till 2:30am. This morning, he has gone to school shattered.

    Do the DLA people think while he is 12 years old he needs lots of help and as soon as his 13th birthday hits, he's fully recovered and able to manage it himself?
     
  2. elainechi

    elainechi · Well-Known Member

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    must have been the night for hypos..mine 13 yr girl was up all night with hypos...hasn.t gone to school as legs still wobbly!!!!!!
    my friends so had his stopped at 12 but she couldn.t be bothered to appeal...but i think you should..i surprised to gt higher rate though..jane has been t1 for 2 years...totally in denial and loads of problems so much so she got lower rate for mobility as keeps misjudges cars and been run over twice as she like to keep bs high

    but appeal...they are more trouble from what i have read and have gone through with puberty.......write what would happenvif you weren.t there fullstop..good luck xx
     
  3. Pastell

    Pastell · Member

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    Yes appeal, sometimes it works. The welfare reforms are a disgrace after my Chemo treatment my benefits were stopped I get nothing and I can't claim JSA. Have a word with the CAB, good luck.
     
  4. Niamh's Mum

    Niamh's Mum · Member

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    Hi, I have a daughter who is Type 1. Diagnosed nearly three years ago. She turned 14 yesterday. We were turned down a couple of weeks ago. Similar to you, we are going through the worst phase of the diabetes we have ever seen. To put this into perspective, she is in Year 9 at school. I have only every been called to the school twice in 2 1/2 years. In a 10 day period, I was called to collect her 7 times! Hypers followed by hypo's consistently. The school nurse is also a nurse at A&E in our local hospital. She told me that she didn't have any control with Niamh's sugars. She had dropped to 2 without feeling the onset of the hypo and with 4 glucose it only brought her up to 4.3 half an hour later. I can only begin to imagine how she feels half of the time and believe me if I could swap places with her this minute, I would.

    We have appealed and I will let you know the outcome. We were awarded middle rate when Niamh was diagnosed. We have been warned not to expect to be awarded similar. Can only try and then will accept the outcome. C'est la vie....

    Gayle
     
  5. Karl Fenn

    Karl Fenn · Member

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    Sorry to hear of your problems with the DLA, I'm sure you have the right to appeal or failing that you can send in a new claim,
    there are a number of other benefits you could apply for, check out the government websites and diffirent benefits you can claim,
    I know diabetes on it's own does not entitle people to benefit authomatically, but if you have had other complications and major
    operations that have left you with after effects you may be able to claim somthing, at the moment all benefits are being subject
    to cuts, some diabetics on the new back to work schemes have had the money stopped for not looking hard enough for work, not
    a good sitiuation with diabetes, the main problem now is the number of diabetics is expected to reach 5 million, the government
    are looking at the cost factor and whether it is sustainable in this economic climate, making cuts to benefits, diabectics appear
    to now be falling into a group that makes automatic right to benefits difficult. Carl.
     
  6. smaynard

    smaynard · Active Member

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    Sadly the DLA award process is extremely flawed and they grossly underestimate the level of care required and the complexities of managing type 1 diabetes in children.

    My daughter turned 7 last week and I have been battling with DLA for 9 months to get them to understand the level of care she both needs and gets.

    The DLA's standpoint was that "if blood sugars are checked before my daughter leaves the home then it is not age appropriate for her to need support outside the home for her condition" and "if blood sugars are checked before the house hold shuts down for the night then it was not necessary for her to need repeated or prolonged attention during the night".

    Clearly any one who has experience of controlling type 1 diabetes in a child will know that to meet NICE guidelines of an HbA1c of less than 7.5% without frequent disabling hypoglycaemia both of these statements are grossly misguided.

    Fortunately, I heard last week that they had reconsidered.....it took months and providing a huge amount of information but I did get there in the end so it was worth persevering.

    My recommendation would be to phone and ask directly for the exact grounds that your claim has been rejected....that gives you something very quantifiable to respond to. Then write asking them to reconsider, I closed my letter with the following:

    In light of all of these facts, I consider your assertions that it is not age appropriate for a six year old to require additional support outside the home or require repeated or prolonged attention during the night appear completely unfounded. If this is still your standpoint I request a detailed explanation of how you reached these conclusions so that I may formalise my appeal.

    It is very important that you ask them to reconsider immediately (the timelines for appealing and asking for reconsideration are very short.....even though it takes them weeks and weeks to respond!)

    Good luck!
     
  7. mumofteendotter

    mumofteendotter · Member

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    Please go to CAB or your local disability advice service and get their advice and appeal. I have a theory that there is a disgraceful conspiracy to turn everyone down to reduce the amount paid out. There I've said it now. Anyway, get professional help. Make sure they help you fill out the forms and make sure their help is noted on the form. Keep a detailed diary of what you do for your child and how often - I found it shocking how much I actually did over a week!!! Please appeal your child as needs and deserves the extra money.

    Good luck and hugs.
     
  8. mrawfell

    mrawfell · Well-Known Member

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    Don't forget you have an MP. Write to him/her about a situation that could put a child's life at risk, and if you have to keep getting medical assistance, just how much is this costing the NHS.
    Only costs a stamp or maybe just an email.
     
  9. pattifaye

    pattifaye · Member

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    Please appeal and ask your paediatric diabetes nurse for help with this. Also keep a detailed diary of the help you and other adults give your child through the week. You need to have feedback on what grounds the adjudicator dismissed your sons claim. Unfortunately these people are not medically trained and tend to think that if a child can blood test and inject then that is all the care they need. The phrase I always put into my statement is requires care substantially in excess of that required by a normal child
     
  10. Jelly Beans

    Jelly Beans · Member

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    I've recently had my DLA (highest rate) stopped for my Type 1 and Underactive Thyroid because of this reason...

    And it's a great one...

    'Nearly being 16, your Diabetes should have been cured.'

    We have a wonderful woman who gives up her time to help those in the area who are struggling with DLA, and we're going to a tribunal (a date will be sent to us sometime in the far future). Make sure all letters are sent in as quickly as possible though - ours got in a week early and was rejected for being too late!
     
  11. kymbowymbo

    kymbowymbo · Newbie

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    hi, my daughter is now 11 and was diagnosed with type 1 when she was 4 years old. a couple of years ago, after already receiving the highest rate of disability allowance, our entitlement was reduced to the lower rate so i appealed and got the highest rate again along with the low rate of mobility which we never had before.

    I definetly recommend appealing as there's no harm in trying.

    :)
     
  12. Tracey167

    Tracey167 Type 1 · Well-Known Member

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    Hi Angel gail

    When i first applied for DLA about 7 years ago i was refused and i decided to appeal and i won the appeal i took my husband with me who is my carer and he explained all that he had to do. You have a doctor, a DSS person and an appeal officer there and they do throw questions at you but if you take all evidence with you you will be fine. The DSS questioned me about how i felt when i had a hypo and my husband had to tell him that i have no awareness when i am having a hypo so he was asking the question to the wrong person, when the DSS man looked at the doctor the doctor nodded as to say what my husband is saying is right.

    You MUST appeal i heard that now they turn alot of people down just to see if they are serious cos if they was'nt they would'nt go through an appeal. I recieved DLA firstly for 3 years then had to re-apply and i sent in letters from diabetic nursed, doctors and also had a 3 month blood glucose print out and that in itself shows the amount of hypos i have and the care i need (a meter does'nt lie) I now recieved DLA indefinatley. Gather as much evidence as you can if the diabetes is causing problems for you son in school with hypos maybe ask his head of year to support as well its worth a go.

    good luck

    tracey167
     
  13. JanieMc

    JanieMc · Active Member

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    I agree with Jelly Beans that the excuse given for refusal was ridiculous. However... And I'm about to upset a few of you here. As a type 1 since 1974, I have never claimed a penny. Sure - I've been through the whole child/ brittle levels stuff and the madness of teenage years, trying to control my levels and that was in the days when insulin was no where near as good. Neither were blood glucose reading methods. So I'm reading this and thinking.. Well what do you need the money for in terms of diabetic care? Please forgive me if you have an answer for me. I'm not trying to be antagonistic. I can perhaps see more fuel being used to go and pick up poorly children from school, but that's it. ( however I am also ignorant of how much it is and the frequency of payments ) is there anyone who can put me right and give me a definitive explanation ?
     
  14. smaynard

    smaynard · Active Member

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    Hi JanieMc,

    I was most interested in your post as I'm always keen to understand the perspectives of those who have lived with type 1 diabetes on how it has/does impact their lives. I'm the mother of a young child who has type 1 and I always take great comfort in hearing stories of people who have lived with the disease for many years leading full and active lives without complications.

    When I read your post it struck me that this was likely the case for you too, given that you can not understand why children with type 1 should need additional care. I am very sorry and sad to understand from a post I've seen else where on the forum that this is not the reality....you suffer significant complications and had great difficulty managing your condition for the first 20 years of diagnosis. I'm so glad to hear that you have been successful in achieving stability in more recent years with the help of a pump.

    I note you mention "you have never claimed a penny". The first thing to say is that I believe this post specifically refers to DLA for children and not adults....I have no experience of DLA for adults and I think that discussion would likely have different points.

    DLA was introduced in 1992....so sadly was not available to children with type 1 when you were diagnosed in 1974. You mention that treatment for type 1 has greatly improved in the years since your diagnosis, I think it is worth commenting that knowledge about the implications of poor control and focus on preventing those implications has too. I have read stories of others that highlight what poor level of understanding and care was historically given to type 1 diabetics

    We are without doubt aided by advancements in treatments available to assist in our battle for stability and thus offer children with type 1 the best chance of continued good health without complications in adulthood. However, please do not think that this is in anyway easy or underestimate the amount of time and effort it takes....even with pumps (and lets not forget only a small % of children in the UK are lucky enough to have those) and improved blood glucose reading methods. In my experience, maintaining tight control in my daughter is a relentless challenge which takes considerable dedication and loss of sleep over and above what normal parenting would require without her condition.

    You comment you can perhaps see a cost implication for more fuel being used to pick up poorly children from school, but that's it. For my family, I don't think we incur any additional material costs in caring for our daughter's condition....we are lucky enough to have been successful in winning our battles for funding for her pump, continuous glucose monitor and indeed the dedicated care her school insisted she must have in order to attend....however, the cost to us is my time, I could not imagine how I would cope with the demands of a job on top of the care demands our daughter's condition presents. The DLA and carers allowance payments are therefore helpful to offset against missed earnings.

    The good news is that I consider that my daughter most certainly benefits from the level of care I am able to provide her....in her 4 years since diagnosis she has always met the NICE guidelines of an HbA1c of less than 7.5% and for last 5 quarters her results have all been in the low 6s. She has not suffered from an episode of severe hypoglycemia and she has not suffered from ketoacidosis. I consider this good stability is in part due to the considerable advances in technology that she is fortunate enough to benefit from but is in no small way a reflection of the intensity or care she receives.

    Whilst not the definitive explanation you requested, I hope this is some way explains why I consider children are entitled to be awarded DLA.
     
  15. JanieMc

    JanieMc · Active Member

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    Hi SMaynard. Thanks for your detailed perspective there. It was a seriously dedicated post. Clearly, if you are unable to work because of caring for your child then there is every justification for the DLA. What about those who have not had to give up work though - how does the allowance help. Again, I'm not trying to be antagonistic, but I just don't get it. I'm aware of when it was introduced. What strikes me is that someone somewhere in government thought it was justifiable so I'm wondering about the reasons for that. As a carers allowance ( which is really what you're describing) it makes good sense. But under what other conditions (if loss of a wage wasn't an issue) would someone qualify?
     
  16. smaynard

    smaynard · Active Member

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    Hi again JanieMc.....you may find it useful to look at this link http://en.wikipedia.org/wiki/Disability ... _Allowance. It explains the eligibility criteria for entitlement to the differing rates of DLA....hopefully this will help to you to understand things a little clearer.

    I have done no research into the governments thinking regarding the introduction of DLA but my assumption is that it was introduced to try and help individuals manage their care needs independently and give them freedom of choice as to how they do that....a straightforward example would be a person who is no longer able to take care of their personal hygiene or household chores without assistance....the allowance would be intended to support them in getting the care they need.

    I really don't understand your view point about having to prove financial loss....some families may be able to pool resources and share the burden without any one individual needing to forego a loss of wage....however, this doesn't diminish the level of burden of the care. It is important to understand, this is an allowance to compensate the person afflicted (i.e. the child, not the parent).

    In my experience, if you refer to the eligibility criteria, it is clear that any young child, if there diabetes is to be managed safely and NICE guidelines targets of control met needs Higher rate care attention to support them.....the reality is that statistics indicate that a shockingly small proportion of children with type 1 diabetes are meeting NICE guidelines for control.....I consider this to be very sad and very concerning.... in my very strong view, children with type 1 diabetes (and their families) need more support from the government and healthcare professionals, not less.
     
  17. derya

    derya · Member

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  18. cuttsy

    cuttsy · Member

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    JanieMc

    I agree with you and your questions about this.
    As a type 1 since 1980 (age 12), my parents never claimed a penny, and never needed to.
    I've also been through the whole madness of teenage years, trying to control my levels in the days when insulin was no where near as good.
    I also have to ask what do you need the money for in terms of diabetic care?
    I can fully imagine DLA being a big help for parents of young diabetics (pre-teenage years) but after that, i would think the best help would be better education/help for children who aren't controlling it very well.
    If their control is good, you should never have to drive to school regularly to collect them, or attend "lots" of hospital appointments.
    The "financial" thing seems a bit false to me.
    If there are reasons for this financial help that i am missing, please explain, as i am maybe being a bit blinkered here, based on my own experiences.
    And DLA for adult diabetics seems absurd, unless other complications are involved.
    We don't pay for any medications or treatments. We don't need special foods. We can work and do nearly all jobs except a few rare exceptions like the armed forces, We are active and can drive.
     
  19. elainechi

    elainechi · Well-Known Member

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    well i get middle rate for my 13 year old daughter....she is totally uncontrolled...gaving problems at school and often ill. i am a single mum with no family near...well actually my family is my mum whos not well last few years so on my own.
    i used to work shift work inc nights and weekends...can.t do that nowas a direct consequence of my daughters t1 control...so the money i get from her dla makes life a little easy...my other chose is stop working ..lose my house and my kids security so i claim ...i do have to say that every year i have to fill out that form im in tears
     
  20. danielleluck

    danielleluck · Newbie

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    Appeal! And if your appeal fails go to tribunial at least with a tribunial you are speaking face to face with a real person!
    You are also likely to be entitled to carers allowance, the next few years are going to be excruciating for your whole family, I know my adolescent ones were for me and mine. Ask for your son to be referred to a councillor it may help if and when he rebels.
    Good luck x
     
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