Benefits for disabled child - where do we start?

[EagleRay]

I'm not sure if we're entitled to anything but need to get the ball rolling if we are...

DD is in hospital with an illness which means she will need lots of care now and in the future, with recovery in a few months hopefully. She's 4 and main issue is paralysis.

Where do I start with this?

DWP website - look for child DLA (Disability living allowance). Request an application form to be sent to you.

Ask for an appt with the hospital / ward social worker to help fill it out.

Sorry for what sounds like a traumatic set of circumstances.

When's she's in receipt of DLA you can apply for Carer's Allowance as well.

DLA is what you call a passport benefit and a very good place to start. The form is long and technical. You need to evidence your claim with reports etc and if you can get support to fill it in by the hospital or a social worker do.

A family social worker or family support worker is a really valuable person to have around when you're adjusting to lifes new direction. You can ask the council for an assessment of needs and may get allocated one.

If you get tax credits or are near the threshold you can add the disabled child/ severely disabled child element.

You can apply to your local council for a carers needs assessment for support for yourselves as things like childcare/ babysitting is more challenging with an additional needs child. They should also be able to reffer you for support looking at home adaptations. Finances are stretched everywhere at present but dont be tempted to undersell yourself or your families needs. Your need is there too.

Again with the local council you can ask for direct payments to enable you to buy services in for your DD to access peer equivalent activities like going out to different places like zoos and activity centres, even the cinema. Or can be used to provide a non parent escourt to attend clubs like rainbows as she grows up (its lovely to allow DC to be just DC sometimes rather than their ever present disability).

If your DD likes animals riding for the disabled are a fantastic organisation and they do carriage riding which can suit some more / very physically challenged people get involved in an activity. Waiting lists can be long depending on area so its a bit of a case of initial enquiries about everything at this stage.

We have a local disability partnership who are great for signposting and do things like radar keys so you can use the disabled toilets unchallenged.

There are quite a few charities you can apply to for grants for certain things. They're never fast but if you have big ticket purchases coming up its worth having a google and asking on the special needs boards.

Thank you so much everyone for replying xxxxx

It's very early days and we're still a bit shocked but mindful of getting practicalities sorted asap as my planned return to work soon is now very much on hold (I'm main earner). DP works away from home and is taking A/L at mo, plus we have nursery fees, a baby, limited family support and various other things which complicate matters.

If you look at the cereba guide online it has lots of pointers.

Your local carers count dept can help you fill it in free - if you message me I can find your local one

I'm not sure whether with DLA for children, the illness needs to be expected to last a while. I know with the adult disability benefits you need to have been disabled for a certain length of time and need to expect to be ill for the foreseeable future ( nine months for PIP).
I'm not sure whether the criteria for children's DLA is the same.

Just looked it up and it is 6 months for children. You may be entitled to more tax credits in the short term if your household income has dropped , keep them up to date of any changes.

You say she will recovery in a few months but then say she will need lots of care in the future. Is it a condition that is likely to relapse? if so she may be eligible for DLA. Social worker would be best placed to advise. Good luck and hope she gets better soon .
Also look at nay charity grants which may be available and surestart may be able to help with the baby / household help etc.

From .gov.uk re DLA for a child:They must have had these difficulties for at least 3 months and expect them to last for at least 6 months.

Depending on where you are contact your local carers organisation as they should be able to put you in touch with support groups and other parents who have been through similar who can support you. Also they have connections with local grant giving organisations.

Sorry - didn't want to out myself too much but basically she will be in hospital for a few weeks and currently has v limited movement. Recovery is hard to put a timescale on but will be a few months (but prob shorter than 6 I think)

The unit we're on is v specialised and I'm certain they've dealt with cases like hers before so I'll see if there's someone here such as a sw with experience of her medical condition

I've a feeling we will fall into that in between place of having an illness that's long enough to impact our lives severely, but not long enough for benefits!

Thanks again

That sounds especially hard for a four year old to deal with, wishing her a speedy recovery and hope you manage to get some help..

My son had 2 strokes at 4 years old, I was unable to get any help benefits wise as even though he had total paralysis to begin with he did recover mobility fairly quickly (about 3 months) it's very hard to prove for children under 5 that you are doing more than is considered normal for an able bodied child. It is also very hard to claim for conditions from which there will be significant recovery. He was back in school full time after 5 months and has made good progress. He is a teenager now and leads a full and happy life and his physical difficulties are only really noticeable to family and hcps.