DD has been visually impaired for 9 weeks now - are there benefits we can claim?

[Katymac]

Not that I am being grasping, you understand; but it is costing us a fortune

Can we claim any benefits?

The date the symptoms started. It isn't about diagnosis, it is about the effect that condition has on you in performing life activities.

For example, two people could have an accident, and both end up using wheelchairs, paralysed from the waist down. One of them does physio, increases their upper body strength, learns to use their wheelchair & 'copes', lving independently. The other sinks into depression, withers, and becomes weak, requiring personal care. They have the same condition, but the second guy would qualify for DLA more readily than the first.

Yes - I can see that

Working out what she needs supervision for or help with compared to an average 12yo will be fun

I'm not sure I have 'met' an average 12yo, they all seem so different some of her fried go into to town on the bus, some don't play out on the street. DD can (could) cook a complex meal, others struggle to eat in a civilised manner. She doesn't need help in the bathroom, but I don't think I can leave her alone in the house anymore.

Oh it is going to be hard

RNIB Guide

Thanks for that Lou, I'll have a read later

Katymac, being nosy as I'm visually impaired myself, what diagnosis have you recieved?

I wish I could be more help, but I was diagnosed at 18 months old so I can't imagine how hard this is for you all

I started off as a 'conversion disorder' it became an 'inversion syndrome' and currently it is 'Streff Syndrome'

But who knows

DD says what she sees "as being like looking through the bathroom window (textured glass) she can see shapes and light & dark but still no colour, she can also see movement"

Although tbh I'm not really sure what any of the diagnoses mean so I'm not sure it matters

cerebra have a really good guide to claiming dla here. It's aimed at children mainly with learning disabilities, but it does cover talk a fair bit about visual impairments too.

You would need lots of evidence too, reports from drs, etc.

Thanks for that - I'll have a look after work

Good luck with claiming dla. It is, unfortunately, very stressful, and you don't need more stress right now.

I googled streff syndrome - I hadn't heard of it before. I found an interesting page here: guthrieeyecare.com/icare/streff-syndrome/

They suggest that as part of treatment;

The main clinical treatment of this condition is the use of a low plus eyewear prescription. This may be in the form of reading glasses or a multifocal. The effect of this prescription reduces the visual stress by just enough to allow the visual system to re-engage, organize and process information efficiently. Results are usually quickly obtained with improvements seen within a few weeks. Some cases may require vision therapy to improve eye movements and focusing. In cases unresponsive, eye care professionals should always rule out organic pathology both at the time of the initial diagnosis and later on.

It sounds quite promising, on top of psychotherapy. I hope the situation improves soon.

Thanks - I agree it will be hard. Apparently children with VI need virtually no additional help than children who can see

Which I am not sure I agree with as DD was cooking, walking to school/shops, sailing etc all by herself & now she isn't - she even needs help dressing (as she can't match colours) - but as some children of 12 would also need support with these things they don't count. For her it is a big change as there is so much she needs supervision with.

That site is pretty much the only one I have found with any useful info (& it was found by a lovely mumsnetter) - but we don't do things like that according to the Dr at the hospital

You can get a blue badge as well. look online ?

Thanks castleonthehill - but I'm not sure that would be relevant for us, at least not at the moment

No - no glasses

look here (please)

Sorry to re-visit this again

But when I look at this form (DLA) is it:

1. What DD needs help with that a typical 12yo wouldn't

or

2. What does DD need help with now that she didn't before?

I'm a bit confused

It's 1- What DD needs help with that a typical 12yo wouldn't.

Great I thought it would be the harder of the 2

DD does loads of things a typical 12yo doesn't do

she is missing out on so much

It is hard, but their rationale is that DLA money is, naturally, limited and they need to stretch it to make sure children get a reasonable quality of life, not to compensate one child for the wonderful life she had before. Otherwise, children from well educated affluent households would get more money, because they were usually the ones that had access to most activities. And children who have been disabled all their lives would get less, because they have no "before" to compare with.

I know it feels harder for both you and your dd because she does have a "before" to compare with.

But the DLA money is there to help with the practicalities of everyday life, and they would be the same for another child who had had less to start with.

So make it about what your average, not too independent, 12yo might be expected to do.

And be kind to yourself while you're doing the application: it is an incredibly stressful experience for the parent because you have to keep stressing the worst and it really brings you up against it

What does an average 12yo do?

I'm not being funny I really don't know

DD can't walk to school/the shops/her friends houses
She can't cook anymore
She can't read anymore
She needs a 1-2-1 at school
She can't (really) wash & style her hair
She even needs help picking clothes

God this is hard

Her sailing is on hold - who knows when that will start up again
At least she can still dance

I would put a lot of emphasis on bodily care and anything that affects her ability to cope with school.

Sorry your dd is having a hard time.

Like Cory, I would also emphasise all the help she needs to do an everyday task like wash or brush her hair, which an average 12yo would not need any help with, or iron a blouse, or make a drink or snack, or go to the park or buy a chocolate or handle money.

There is a bit near the end of the form for what she would do if she did have the help she needed.

Have you talked with her about re-starting the sailing? Having a target like that might make a difference mentally, even if it is months away?

It is a stressful form, so take your time filling it in - make a blank copy or plenty of notes.

She is sailing - but what she liked was the independence - she got her boat out, rigged it, I helped launch, then she was off by herself

Now she has to sail in a boat with an adult & a friend

She was approaching finishing her RYA Youth level 3 but that is on hold. She also used to take younger children out in club boats to introduce them to sailing and was considering volunteering to help children with additional needs sail (we aren't sure if she would have been allowed because of her age)

OK

I need help - does "Has the child been assessed for things such as disability aids, or do they a care plan or an occupational therapy report?"

Mean the reports that sensory support written?