DLA for Down's child

[proudmum74]

Hi - my DD is now 9 months & our health visitor has suggested that we should apply for DLA for her.

At their suggestion I've phoned up for a form, but does anyone know:

1. How easy is it to fill in the forms? the HV suggested we may need some independent help to make sure we don't understate dd disabilities
2. does it require any assessments? as I'm not sure I want to subject her to that at such a young age.
3. Are their any disadvantages in claiming e.g. restricting the schools she maybe able to attend etc.?

Many thanks

HI proudmum, to be honest the answer to all 3 quetions is no. The forms are to say the least horrid but no the is no extra assesments needed and no restrictions will be crated by her getting it. Do you have a local carers centre, they will have someone to help with the forms.

Hi keepingup - thanks for your help. I had a horrible feeling that they would be a nightmare to complete. We have a lovely HV who has offered to help fill them in. I tried asking our local benefits office, but apparently their ability to offer advice is now means tested...

Hi proudmum. My health visitor helped me fill in the form for my DS (ASD)they are not fun but don't be scared off - just lots of repetition and I did form in 2 and a half hours from start to finish and was gtanted DLA 2 weeks after returning them and it was back dated even though i missed their deadline- not everyones experience I know but wanted to give you some positive news!

OK - thanks everyone for your help!

Hi *proudmum" my little boy (also with Downs) has been turned down for DLA as has the another friends little boy. They are both around one year old. Another friend did get it for her daughter, but I think she has some additional health issues in relation to having fits (as well as the downs)

My sister, a social worker (!!) helped me fill in the forms but she felt that we wouldn't get it as my son doesn't really, at the minute, need much more care than any other baby.

We now have our own social worker and she wants us to give them another go, and she has referred us to a carers organisation who said they will help me fill in the forms again. But I'm not sure I can face it again.

Hi, my son, also downs, has had DLA form 3 month. The hospital social worker done the application for me.
For us, at the time he was in and out of hospital, needed oxygen, has life threatening medical conditions, needed physio, OT and regular massage. HTH x

Riven's advice about demonstrating how much care compared to a same age peer is the key. The trouble is knowing how much care a same age peer requires if you haven't got other children. It feels horrid to have to detail and document all of a child's differences, but the DLA decision makers won't necessarily know if you don't tell them. The easiest way is probably to pick 2 other babies without any apparent problems: one same age as your dd and one same developmental age. Make a guesstimate, "at xx months dd should be doing a, she's still doing b which would be typical of a xx month old, which means activity c takes xx minutes longer than it should".

Have a look at the cerebra guide (sorry I haven't got the link but google those words and you'll find it). If you are doing lots of extra stuff to encourage development, that would count. So if (for example) low muscle tone means you have to carefully place toys, can't leave her sitting, have to encourage her to work towards crawling... that's all physiotherapt & occupational therapy. Watching something special and making an effort to learn Justin's signs counts. Even pat-a-cake and peek-a-boo, if you're playing them more than you otherwise would.

By the time you've finished the form you'll know if you're entitled. And if HV says you are, I'd suspect she's right.

Hi mariamagdalena - thanks, your comments are really helpful! Have to say, like most mums, I'm probably in denial about how much extra work I put in with DD, as she's my only child I just assume the hours of playing / physio is just what any mum does; but playing with nt this week has highlighted, yet again, that she is a little behind where she probably should be (not helped by one of the lovely mums constantly pointing out how much behind my dd is compared to her ds and "they're exactly the same age", don't you just love the supportive type! ).

In terms of extra work, I attend sign language courses, we have physio, OT, SALT & she has heart, ear & eye problems so in addition to the extra appointments her hearing and muscle tone means that her speech development isn't great. Her poor muscle tone also means that she still can't sit up on her own yet, despite how much she tries when we do her physio exercises every day...

Our HV is really nice and is pushing for me to do this. We have a meeting set up to go through the forms together later on in the week. I'm not overly optimistic that we'll qualify, but thought it was worth a go just in case, and if it works we can add the money to the saving account we've set up for her care when she's older.

Perhaps you could get your own back on that mum by getting her to help you with writing a diary of your dd compared with hers! Save you a lot of work, and make her feel properly ashamed of herself

love the idea of the mum helping with diary, or take notes of what she says. Take a look at developmental stages. From my nursery nurse training in writing observations, I always do the opposite with my son and think of what he isn't doing or getting, physically, intellectually, language, emotionally and socially.........PILES for short.
Also look at all your extra work in more detail. Does she roll from back to front? Does she lift her head when lying on her front or back? What about sleeping issues? special diet? special clothing, extra clothing? reflux? sickness? medication for these?
Sorry can't think of any more, feel free to pm if you need help in answering the q's.