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Laughing My Head Off Here

Got my daughters DLA re-apply today and they asked if she still had Downs Syndrome???? Oh yeah right they grow out of it dont they???? They suddenly lose the slant eyes and mental handicap brilliant!!!!!

Who are these people???

Am I mad nooo of course not cos Downs si something you grow out of...not!!!!
if i had known then what i know now

Replies

  • FranFran Forumite
    11.3K Posts
    Part of the Furniture Combo Breaker
    Forumite
    Janie,

    Sorry to hear that you are still have problems with the benefits minefield. You're right, it isn't a joke, perhaps it's worth putting in a complaint about it.

    Are you getting all possible local help for issues to do with a disabled child? Your CAB would be able to tell you of any local organizations etc., also it would be worth a trip to them re your situation generally to see if they can advise/negotiate re benefits and other issues.
    Torgwen.......... :) ...........
  • I believe (I might be wrong) that if someone has a permanent, lifelong condition they can get a lifelong DLA award to save reapplying every few years. It might not kick in until she's an adult, though. It might be worth asking the DLA people if this is an option for the future.

    I'd suggest photocopying the form, then next time you can probably just copy the bulk of the info.

    The DLA form is a right PITA and you have my sympathy.
  • ROCKINGHAMROCKINGHAM Forumite
    982 Posts
    Mortgage-free Glee!
    My son has got a lifetime award of DLA - he has cerebral palsy. I used to have to remit the paperwork every so often. Then I asked why do I have to keep doing this - and hey presto he got the lifetime award - I think he was about 12 at the time. Its one less form to fill in and one less for them to lose! :o
  • janiewaijaniewai Forumite
    42 Posts
    Thank you Rockingham and Filigree for ages I have been saying to friends why dont Downs kids get DLA for life as they never grow out of the syndrome.

    I will certainly do what you say and see what happens.

    Much obliged
    if i had known then what i know now
  • I know how you feel the same thing happens to me every year with my daughter she has CF.
    The last form that I filled in I got the hospital to write me a letter all about the illness and what the out look for the futuer would be I also got as much information on the illnes and sent it with the form she has now been awarded it for 10 years at a time think they are worried i will send all the information again must be taking them 10 years to read it all.
    But at the end of the day it is a life long illness so why can they not just sort it out for life long it easy.
  • [Deleted User][Deleted User] PPR Forumite
    0 Posts
    Mortgage-free Glee!
    Newbie
    filigree wrote: »
    I believe (I might be wrong) that if someone has a permanent, lifelong condition they can get a lifelong DLA award to save reapplying every few years. It might not kick in until she's an adult, though. It might be worth asking the DLA people if this is an option for the future.

    I'd suggest photocopying the form, then next time you can probably just copy the bulk of the info.

    The DLA form is a right PITA and you have my sympathy.

    DLA is no longer given as a lifetime award,its been changed to an indefinate award,which basically means they can come back to you any time after 12 months of it being made,in reallity only about 1% are looked at again under whats known as right payment protection,and then its usually people who they think may have got better or worse.
  • janiewai wrote: »
    Thank you Rockingham and Filigree for ages I have been saying to friends why dont Downs kids get DLA for life as they never grow out of the syndrome.

    I will certainly do what you say and see what happens.

    Much obliged

    Does the condition never get worse or better then?
  • tattoed_bumtattoed_bum Forumite
    1.2K Posts
    hi ,what age is your daughter .i have just had to renew my 5yr sons dla and they have now awarded him mobility as well .they have given him it for the next ten yrs .
    sometimes i think they just send out a standard letter without actually realising what they have written ,
    they can be insensitive bu**ers at times

    i would really like them to come out and spend just one day with a family with a disabled child just to see how difficult it can be .
  • SuziQSuziQ Forumite
    3K Posts

    i would really like them to come out and spend just one day with a family with a disabled child just to see how difficult it can be .


    my sentiments exactly! My son looks fairly 'normal' and on a superficial glance a stranger would not suspect he had anything 'wrong' with him. Only his family and school know how badly his Autism affects him and what a tortured world he (and to a lesser extent we as his carers) live in. He has only just been awarded DLA after it being stopped for a couple of years (I hadn't got the energy to fight back then) and although it says 3 years on the form,I know they can come back to us anytime and I am already dreading the next lot of form filling!
    Is there a miimum time before they do that though ie 6 months, a year?

    I wonder if anyone does actually volunteer to the benefits people that their child has improved drastically and shouldn't be getting the award? I have never heard of it but I'm sure it must (rarely) occur.
    Tomorrow is always fresh, with no mistakes in it!
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