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Thread: Disabled parent in need of financial help with childcare costs over summer holiday

  1. #1

    Disabled parent in need of financial help with childcare costs over summer holiday

    I have severe form of narcolepsy and cataplexy, which are both neurological conditions. My symptoms are currently very severe and very frustratingly prevent me from working, driving or any form of life (including socialising, college etc). As a single mum with no family support, my entire day is spent preparing for when my two children are in my care. This means sleeping most of the day whilst my children are at school, so that I don't have uncontrollable sleep attacks when I'm caring for them.

    I'm really worried about the forthcoming school summer holidays and how I'm going to cope, as not resting isn't an option for me. I figured the best solution for everyone would be to register them for some kind of summer playgroup, which allows them some fun whilst I can rest. Has anyone been paid DLA for childcare costs in the past? I'm aware of the two components and that childcare doesn't feature in either, but also aware that the benefit is to help with additional costs that occur as a result of a disability. Can anyone offer any advice on this?

    As I haven't made a claim before now, I will have to apply for PIP not DLA and I'm currently in receipt of ESA.

    Thanks
    Last edited by crazynarcolepsy; 28-06-13 at 13:09.

  2. #2
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    Looks a very complex matter, I think your best bet would be to contact your Local Authority Social Services dept and ask to speak to the Disability Welfare Rights Worker or your local CAB. They would be best placed to advise and help you before you make any applications such has PIP etc, which I don't think is meant to meet you're particular circumstances and I don't think you'ed have much success with, you need expert advice for this.
    Last edited by Jard; 28-06-13 at 00:37.

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    Quote Originally Posted by Jard View Post
    Looks a very complex matter, I think your best bet would be to contact your Local Authority Social Services dept and ask to speak to the Disability Welfare Rights Worker or your local CAB. They would be best placed to advise and help you before you make any applications such has PIP etc, which I don't think is meant to meet you're particular circumstances and I don't think you'ed have much success with, you need expert advice for this.
    Would agree. Good advice.

  4. #4
    Senior Member deebee's Avatar
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    there is no provision for childcare within DLA but if you need watching over you could be entitled and there would be nothing stopping you allocating some of the money towards childcare.
    Are you under the care of a sleep disorder clinic? and are you currently on medication for your narcolepsy?
    don,t quite understand first line of your post?? are you saying that you have narcolepsy, cataplexy and other neuro conditions that are not recognized or are you saying that narcolepsy, catalepsy are not recognized? pretty sure they are!

  5. #5
    Quote Originally Posted by Jard View Post
    Looks a very complex matter, I think your best bet would be to contact your Local Authority Social Services dept and ask to speak to the Disability Welfare Rights Worker or your local CAB. They would be best placed to advise and help you before you make any applications such has PIP etc, which I don't think is meant to meet you're particular circumstances and I don't think you'ed have much success with, you need expert advice for this.
    Thanks, this was my next course of action. I already have the number for the welfare rights advisor, however i'm unabke to access the service unless i've been allocated a case social worker. Social Services themselves have said that there's nothing they can do at the moment (I've had an assessment). Of course should the situation change (ie I try to manage on my own, which results in further deterioration of my health rendering me unable to appropriately care for my children), then they can dip into a pot of cash and fund childcare places. I used to work alongside SS in the voluntary sector and was even doing a Masters in Social Work until my health took a downward turn, I know the system well and it just confirmed my suspicions.

  6. #6
    Senior Member deebee's Avatar
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    welfare rights advisors usually help anyone (no need to have a case social worker) sometimes there can be a long wait for an appt, depending on where you live

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    Another route you can try,is: Contact your GP and ask if they can possibly provide you with a letter of support, if so copy it out a few times. Then contact your Ward Member (Councillor) at your Local Authority and ask for their help, explaining the situation to them. There are various avenue's they can help you investigate for funding places on any summer schemes being run in your area, as well has pushing the matter with SS's.

  8. #8
    Quote Originally Posted by deebee View Post
    there is no provision for childcare within DLA but if you need watching over you could be entitled and there would be nothing stopping you allocating some of the money towards childcare.
    Are you under the care of a sleep disorder clinic? and are you currently on medication for your narcolepsy?
    don,t quite understand first line of your post?? are you saying that you have narcolepsy, cataplexy and other neuro conditions that are not recognized or are you saying that narcolepsy, catalepsy are not recognized? pretty sure they are!
    My health care is very complicated. I was under a sleep specialist who was amazing, however he sadly died unexpectedly and the trust closed the sleep clinic down, with my care being transferred to a neuro who has caused me nothing but problems, but also refused to allow me a second opinion (not a legal right in the UK, who knew!). Changing neuro's isn't an option, as the patients charter differs in Wales and with patients being unable to choose who they are seen by. I have recently officially stated that I have no confidence in his clinical opinion and put an application to my health board to see another specialist (which would be out of area, as there isn't a specialist within 90 miles of me). I've tried lots of meds, but have to find a balance that works for me as I build up a quick tolerance.

    Narcolepsy isn't an officially recognised disability in the UK, but is in other countries. However, because of its disabling nature sufferers can and do claim for help via DLA. It's so etching I've avoided doing in the past, as being in receipt of benefits doesn't sit well for me and have been of the opinion that I have enough to live off, as I receive maintenance from my children's father. If you're interested in reading more about narcolepsy (Wikipedia is not the greatest resource for it!), I have written a little about the condition with a what is it type guide here http://crazynarcolepsy.blogspot.co.u...arcolepsy.html

  9. #9
    Senior Member deebee's Avatar
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    I am pretty sure that narcolepsy IS a recognized disability in the UK, I myself am not allowed to drive because of it,when I was tested they said I didnt actually have narcolepsy but my apworth score was high enough to warrant medication and that the sleep paralysis I was having was a kind of narcolepsy

  10. #10
    Quote Originally Posted by deebee View Post
    I am pretty sure that narcolepsy IS a recognized disability in the UK, I myself am not allowed to drive because of it,when I was tested they said I didnt actually have narcolepsy but my apworth score was high enough to warrant medication and that the sleep paralysis I was having was a kind of narcolepsy
    I stand corrected! Even though i was diagnosed 11 years ago, I've been living in my own bubble until about 4 months ago. When I googled it, the only thing that came up was the e-petition that had been organised by Narcolepsy UK, with a link to a governmental response in 2008. Of course it wouldn't come up because its termed under equality act, doh!!! This is a relief

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