Can I claim DLA for my daughter?

Jaks

My daughter has just turned 5 years old (December 13th).

We have been told that she has Russell Silver Syndrome by a peadatrician (just waiting for confirmation at our genetics appointment in January).

Russell Silver Syndrome (how it effects her)

She is very small for her age - 81cm tall and 1 Stone 7lbs in weight, she wears 12-18 month old size clothes (these are too big around that waist and too tight over the head), she wears size 4 shoes.

Her right leg turns in and she limps a little on that leg and we have been told that she has flat feet.

She has always been behind her peers physically from the begining of her development.

She cannot jump or run properly and when she walks she woddles, she didn't jump with both feet off the floor until she was 4 (she can only jump once in succession and cannot skip), she has trouble with stairs and cannot walk up them and down them unaided and cannot use the toilet or sink unaided, she has to be lifted onto the toilet at home and school (even cannot not use the really tiny toilets at primary school unaided as these are too high for her), she cannot sleep on her own in a bedroom incase she needs the toilet in the night.

She tires very easily, about a month after starting full time school she spent from Friday evening until Sunday late afternoon sleeping, she didn't eat and barely drunk or went to the toilet.

Mentally she is fine so far and has started to read, can right her first and last names and her own and can count to more than 20.

She cannot walk very far and when she does walk short distances she is very slow, she can walk to school (2 roads away) and comes home in a buggy. For 99% of journeys she uses a buggy.

At school lunch time they have a special table for her and a friend as the normal ones are not suitable for her, the dinner ladies also brings her her lunch as she cannot even see over the serving hatch let alone reach it.

In the new year we have the following appoinmets:

Physio therapy (1st appointment)
Genetics (1st appointment)
Eye Test at hospital (something begining with O) (1st appointment)
Peadatrician (yearly appiontment)

We are also waitng to hear from the Occupational therapist for home and school help.

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Do you think we would be able to claim DLA for her? In one way I don't think she needs it as she can walk a little but in another way we don't want to miss out on anything, they way things are going she is going to need a disability buggy for children as I doubt her baby buggy will be suitable for her in the near future

PolishBigSpender

You'll almost certainly get at least the low rate of the mobility component of DLA, and quite possibly the high rate of the care component. It all depends what you put on the form - but there is a certain 'way' to fill them in.

I recommend you go onto a specialist diability forum for the UK for help with the forms - this forum isn't really capable of making sure that you get all that you are entitled to. Other forums will also be helpful if you need to appeal/etc.

Jaks

Thanks for the reply. I did apply for DLA a year and a half ago and got turned down and was advised to wait until she was 5 to claim again (something to do with the fact that her needs weren't that much different to other 3 year olds at the time). Things haven't got any better since the claim and she doesn't have the same quaility of life as other 5 year olds and cannot join in every thing normal sized and able body 5 year olds can.

One thing I forgot to add was that she didn't take her first steps until she was 2 and she falls (trips) over quite a lot. I thought that I would add this to help other parents who might be researching info on Russell Silver Syndrome (not many people know much about the condition - it is a form of dwarfism that can effect you physically and mentally)

irismary

I strongly suggest you get some advice from your local Citizens Advice Bureau. They will be able to help you complete the form so that all the essential information is included, You are right in thinking that the "test" for children is whether they need a greater level of care than children of their own age who have no health problems. This is for the " Care"component of D.L.A. As your daughter gets older her needs will be greater in comparison to children her age. It sounds as if your daughter may also be able to get the Mobility component (high rate) because her mobility is restricted. You can phone your local benefits office for the application form. It will be date stamped and as long as you returnit by that date the award will be backdated to the date you asked for the form

robredz

Make sure you get the C.A.B. or a welfare rights service to help you fill in the forms, as the questions are set out as detractors similar to multiple choice exams. You must put how the disability affects her in relation to each question and be aware that some look similar, but are different. eg. because of my..... I need help to do ..... The CAB are probably best if you can get an appointment as they will help with appeals if DLA is refused.

mightymole

if you do apply for dla always put when your daughter is like at it's worst,

sheeps68

Go for it but as others have said seek help to fill in the forms so you word it correctly and therefore avoid the appeals process. The forms are tough but worth it.

scooby1001

My daughter is 11 and has russell silver syndrome along with a few other problems. I applied TWICE when she was younger for DLA and was turned down both times. I applied again 2 years ago and she got the middle rate only. It is not the name of the disability that matters but how it affects the child. Obviously the older they get the more their problems are noticeable.