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what rate DLA should we expect to get

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rjk1
rjk1 Posts: 16 Forumite
edited 25 June 2015 at 9:43PM in Benefits & tax credits
Hi there everyone, just opinions wanted really
My DD is 3 months she has an extra chromosome (trisomy 21) otherwise known as Down syndrome.

I had to give reasons as to what differences there are between her and another child of the same age.
She current goes roughly 3oz of milk every 3 hours sometimes each bottle takes up to an hour to compete due to low muscle tone
This goes on through the night also
Other babies of the same age I'd expect them to be on at least 5-6 oz per feed and longer between feeds
There are other things I've added such as general low muscle tone where we have to hold her differently as she can't yet hold her little head up.

I'm wondering what your opinions are on what (if any) rate you think she will receive.

Thanks. X

Comments

  • elsien
    elsien Posts: 35,932 Forumite
    Part of the Furniture 10,000 Posts Name Dropper Photogenic
    Have you sent the form in yet? If not, there's information about applying for dla for babies on the Downs Syndrome Association site that might help you think what else to include.
    All shall be well, and all shall be well, and all manner of things shall be well.

    Pedant alert - it's could have, not could of.
  • rjk1
    rjk1 Posts: 16 Forumite
    Hi Elsien
    I have sent it - I know that both things count if that makes sense because I spoke to the association over the phone.
    I'm just wondering what rate you would think the first point deserves based on the fact I'm (we) practically up all night feeding her
  • merlin68
    merlin68 Posts: 2,405 Forumite
    Dla and babies is a tricky one, as you have to have needs that are much greater than a normal child that age.
    My dd had high rate but that's because she was tube fed.
    Think your going to have to be a bit more specific. I wouldn't like to say as it depends a lot on what you've written and the decision maker on the day.
  • kazzah
    kazzah Posts: 460 Forumite
    Part of the Furniture 100 Posts Combo Breaker
    based on my experience of working with an organisation for children with a physical disability - at this age you might not get an award at all.
    It has become increasingly more difficult to make a successful claim for a baby and whilst I do believe your baby requires a lot more attention than a baby without Downs - if you have completed the form simply stating that it can take an hour to complete a feed etc you are unlikely to be successful. Many other bottle and breast fed babies take over an hour to complete a feed and many breast fed babies feed every two hours or so throughout the day and night- so as far as the DWP are concerned, your baby would be on a par with those - so doesn't require any care over and above that of a "normal baby of the same age"

    I suspect you would be more successful as she gets older when she isn't achieving her milestones - such as sitting up, crawling etc
    I hope you DO get a positive outcome - but so remember you need to show that she requires attention from another person for personal care needs SUBSTANTIALLY in excess of that of another baby without the disability.
    Don't give up if you are unsuccessful - it is hard to fight the decision makers but it can be done.
  • nannytone_2
    nannytone_2 Posts: 12,993 Forumite
    Part of the Furniture 10,000 Posts Name Dropper Combo Breaker
    as has been said ... you need to show significantly higher needs than a baby of the same age.
    my son was perfectly normal but didn't sleep through the night until he was 5 and until he was turned 2, rarely slept for more than an hour at a time.
    my grandson received HRC, but he was older (18 months) and was unable to walk, sit, communicate and was tube fed and had seizures. so compared to a 'normal' child of his age, had significantly higher needs
  • marliepanda
    marliepanda Posts: 7,186 Forumite
    http://www.downs-syndrome.org.uk/for-families-and-carers/benefits-and-financial-help/disability-living-allowance/

    I found this which may be helpful. Note that it says all children will be entitled to DLA 'eventually' and to consider applying when your child needs 'a lot more' care than other children their age.

    Holding a child differently is not 'a lot more care' as all babies need to be held in one way or another. Holding her differently is simply adapting to her needs, not providing 'more care'

    I imagine feeding is similar, adapting to her feeding needs. As stated above, this varies from child to child so would not likely be considered as 'more care'

    Maybe you will find something on that link that you do find applicable to your daughter.
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