DLA (child) Renewal

lisa4995

Hi all,
I am new to this site and really just looking for advice, My 11 year old daughter has received DLA since birth with a couple of hiccups along the way, 3 years ago she was awarded higher rate personal care and higher rate mobility. In December I returned her renewal pack nothing has changed other than she has deteriorated somewhat, her conditions (which are numerous) are long term/lifelong I am happy to expand on these if needed. Anyway her claim expired on 01/04/14 and I have been chasing it up since late February when I was told it was with the decision maker. On 16/03/14 I was told the decision maker had requested a factual report from my daughters GP, this was received, completed and returned by 21/03/14. I continued to chase it up and by last Friday it still wasn't with the DLA so I asked them to fax my GP for the info and was told it would be done early this week, I called this morning and was told no it still hadn't been done so this afternoon after becoming frustrated I called to complain and was told a decision has been made and letter sent today, the person I spoke to was unable to advise me as to what the decision was. Following this call I contacted the carers allowance helpline to find out if my carers allowance clam had been shut down yet which it has however the gent I spoke to was able to tell me the DLA decision........they have completely stopped the mobility element and reduced her personal care to the lowest rate:mad: I don't understand how they can change their decision so drastically when she has not improved in anyway?!?!?! I obviously am going to fight this decision and will ask her nephrologist, urologist and ortho for letters but I was wondering if anyone has successfully appealed anything similar and has any advice, I am already annoyead at the length of time it has taken and them requesting a report from a GP who doesn't deal with my daughter and I enclosed a consultants report listing her conditions and medications. This has left me feeling o stressed as obviously her DLA amount will drastically reduce, my carers has stopped, I need to inform the tax credits and will lose the disability element and in May motability will be removing our vehicle meaning I will have to pay for public transport to school as my daughter can't physically manage the 15 min walk and I can't push a wheelchair and hold onto a 3 year old. Any advice about appealing will be greatly greatly appreciated. xx

bloolagoon

Is she having dialysis?

confuseddaughter_2

lisa4995 wrote: »

Hi all,
I am new to this site and really just looking for advice, My 11 year old daughter has received DLA since birth with a couple of hiccups along the way, 3 years ago she was awarded higher rate personal care and higher rate mobility. In December I returned her renewal pack nothing has changed other than she has deteriorated somewhat, her conditions (which are numerous) are long term/lifelong I am happy to expand on these if needed. Anyway her claim expired on 01/04/14 and I have been chasing it up since late February when I was told it was with the decision maker. On 16/03/14 I was told the decision maker had requested a factual report from my daughters GP, this was received, completed and returned by 21/03/14. I continued to chase it up and by last Friday it still wasn't with the DLA so I asked them to fax my GP for the info and was told it would be done early this week, I called this morning and was told no it still hadn't been done so this afternoon after becoming frustrated I called to complain and was told a decision has been made and letter sent today, the person I spoke to was unable to advise me as to what the decision was. Following this call I contacted the carers allowance helpline to find out if my carers allowance clam had been shut down yet which it has however the gent I spoke to was able to tell me the DLA decision........they have completely stopped the mobility element and reduced her personal care to the lowest rate:mad: I don't understand how they can change their decision so drastically when she has not improved in anyway?!?!?! I obviously am going to fight this decision and will ask her nephrologist, urologist and ortho for letters but I was wondering if anyone has successfully appealed anything similar and has any advice, I am already annoyead at the length of time it has taken and them requesting a report from a GP who doesn't deal with my daughter and I enclosed a consultants report listing her conditions and medications. This has left me feeling o stressed as obviously her DLA amount will drastically reduce, my carers has stopped, I need to inform the tax credits and will lose the disability element and in May motability will be removing our vehicle meaning I will have to pay for public transport to school as my daughter can't physically manage the 15 min walk and I can't push a wheelchair and hold onto a 3 year old. Any advice about appealing will be greatly greatly appreciated. xx

I'm looking at a possible similar situation with my mum's Attendance award.
From what I have read on here and on other websites, they have really clamped down on DLA awards. We all know that the government want to slash 20% off the overall annual DLA bill. There is only one way that I can see how they can do this is for them to restrict the level of awards from what it was like a year or two ago.
GP reports! Tell me about them. One was sent to the DWP about my mum, saying that she has no problems in being able to look after herself. Yet some weeks later an OT from Social Services told the DWP that she needed 24/7 help with care!
These GP reports are generally done by someone in the office who has a brief look at the medical file. The GP, any GP doesn't get involved in the process except to sign it off. well that's how it works at my mum's surgery.
Also you can appeal, but when I questioned this on the off chance that my mum will have to go down that route, it can take 12 months before you get your day in court.

lisa4995

Hi Bloolagoon,

No she isn't currently on dialysis our consultant is hoping to be able to do a transplant from either myself or hubby before she reaches that point although she is hovering between stage 4 CKD and end stage her levels seem to jump around somewhat which to be honest can be concerning. As I aid she has other numerous problems along with the kidneys, she is completely incontinent and due to spinal cord issues has no sensation of needing the toilet and her bladder itself does not function properly so she has a colostomy that will be for life and has to be catheterised every 2 hours, due to frequent infections and antibiotics not working she has to have a bladder washout twice a week where we have to put saline with antibiotic in directly into the bladder and leave it for 2 hours, she also has bilateral dislocated dysplastic hips causing her balance problems and lots of pain when walking and she is unable to walk any considerable distance she wouldn't make it the length of a football field without having to rest and she is much shorter than she should be due to being 12 weeks prem and a few other conditions that all connect to the kidneys oh and she is being checked for scoliosis as her walking has significantly deteriorate in the past few weeks.

bloolagoon

If she is having invasive regular treatment then this is barmy.

lisa4995

Hi confuseddaughter,

12 months?!?!?! please say that is a joke, I must admit my GP is actually very good as are the receptionists but as far as I was told this morning the report still hadn't turned up with the DLA but they have still made a decision, I just find it completely baffling when my nephew who has food allergies (which granted cause him skin problems and it can be very sore) was recently awarde middle rate with no problem, no writing to GP's nothing x

lisa4995

I agree it is barmy she has regular meds her catheter every 2 hours regular baths and night time changes due to accidents in the night and then all her mobility issues. x

bloolagoon

lisa4995 wrote: »

I agree it is barmy she has regular meds her catheter every 2 hours regular baths and night time changes due to accidents in the night and then all her mobility issues. x

The mobility can always cause problems as can urology as they get older as it's subjective and they could say night time aids could be used - but when it's invasive treatment that can not be administered by a child (or even adult) then I cannot see how they can possibly claim otherwise. There is no grey with this and I assume why dialysis get an auto pass to at least middle rate.

Those treatments are MORE invasive than dialysis which by their own guidelines is MRC.

I can only suggest it's been an error and hope others can help.

mummyroysof3

So sorry to hear you are having such a rough time. Only advice is to fight it. Let us know how you get on.

lisa4995

Thank you bloolagoon, the night time issue in our case is sadly unavoidable due to how her bladder constantly contracts unless we set alarms every 2 hours or she wakes up then it is likely her nappy will leak and her bed will need changing we try to stay up late and get up early to avoid this but sometimes it is not enough, here's hoping that the letters from her consultants will help, the poor kid has to use a wheelchair if we go out anywhere and can't even keep up with her friends if they are walking it's just so annoying

lisa4995

Oh I was told by a friend to contact my local MP does anyone have any idea if this will help at all?