Confused about what assistance is out there

Frugal_Fraggle

Hi

I'm hoping some of you may be able to offer suggestions of where to look/who to speak to, as I'm feeling a bit overwhelmed and lost.

My boyfriend has recently been diagnosed with Functional Neurological Disorder, which he should be able to register as disabled with. We are going to apply for that shortly.

I work, so I believe I don't qualify for carers benefit, as the allowance you're allowed to earn elsewhere is pretty low, so I'm not expecting anything from there.

I've heard stories that if you buy a house/flat specifically to be suitable for a disabled person, there is some kind of grant/benefit? To me that sounds unlikely, but the person who told me about it is convinced it's true (but doesn't know where I'd find out more :cool:) so I thought I'd see if anyone on here had heard anything about it? We do need to get suitable accommodation sorted, as he's currently a few flights of stairs up so he is pretty much housebound.

I'll also need to look into things like wheelchairs, as currently the pain restricts him from walking any distance.

Any other advice/suggestions of who I should speak to and what I should do would be appreciated, it's all new to me!

Indie_Kid

There's no such thing as register disabled anymore, unless he's deaf or sight impaired.

If you have a house adapted for a disabled person, you can receive a council tax discount. This is non-income based.

He's entitled to an assessment from social services and so are you, as his carer.

pmlindyloo

Are you currently living together or thinking of buying a place to move in together?

You do not say if he is on any benefits or what his financial situation is.

Is he claiming Disability Living Allowance or Personal Independence Allowance? This is not means tested.

Cyclamen

In answer to your council tax query.. you can receive a discount on council tax if a room has been specifically and solely adapted for the disabled person.. so building an extension for a downstairs bedroom/wetroom would not increase council tac banding.. but just buying a bungalow or having bathroom converted to a wet room doesn't qualify for the reduction.

FND is a disabling condition, I would imagine your partner would be eligible for some help such as PIP. Is he still in work..if so 'access to work' are worth getting in touch with to help with adaptations etc.. if he isn't able to work ESA is worth looking in to.

Your GP can refer him to 'wheelchair services', criteria vary from council to council but they can give you a voucher towards buying a wheelchair of your choice or supply a wheelchair of their choice. I haven't used this service as was told they'd only provide me with a 'push/manual' wheelchair and i hate being pushed so saved up for my own wheels. You can pick up some bargains on ebay/preloved.

I would contact adult social services for a needs assesment.. they will be able to help by loaning equipment to make things easier for your partner.. without knowing details its hard to guess..but if he is weight baring perch stools, shower seats/bath boards, leg lifters, bed levers etc might be of interest and help him maintain independance. If he needs care help these are the people to get in touch with.. look at your local council website for details.

Is there a national charity for FND? The charities for my two disabilities are fantastic at providing information and support.. so again i suggest a google.

I hope you find something to help.

Frugal_Fraggle

Thank you for all the advice.

We currently don't live together, saving for a place (which my mother will also have to move into, as she's getting older/deafer so needs the assistance). She should probably be registered as deaf, so I can at look into that at the same time. It's probably the council tax discount my friend was thinking of - I'll look into that as well, see if it would apply.

He's not been in work for 6 years (that's how long diagnosis has taken), as he was in manual labour before and couldn't continue with that. He was applying for stuff, and getting told to 'come back when you are well enough to work', currently he's on ESA, which will need to be re-assessed now he's got a diagnosis.

I'll look into wheelchair services - have to admit I'm not so keen on the 'push' variety either as it'll be me doing the pushing, however it would be helpful shorter term to have something like that so he could go some places without being crippled by it. An electric one wouldn't be an option at the moment anyway as there's no chance I could carry that upstairs after use! I'll keep an eye on Preloved etc, as if I spot a bargain I could store it at home for occasional use until we've got a suitable ground floor place sorted out for us.

I'm going to try and get him help from somewhere like CAB for filling in the disability/personal independence forms - while I am fairly confident filling in forms, with something that important I'd rather he got advice from people more knowledgeable than me, and they did a great job with his ESA forms.

Thanks again, feeling a bit more organised and have a direction to go in now

Indie_Kid

There might be a local support group for FND. And here should be a carers group too.

Cyclamen

Wheelchairs - have a google for a shoprider vienna.. usually about £350 used £890 new.. they are transportable and split into parts to go in a car boot. Still pretty heavy though i think heaviest bit is about 16kg. If getting a 'push' one i suggest big rear wheels.. far easier to push, not as bumpy and the passenger can make small adjustments of angle if strong enough.. i hate being parked a few inches away from what i want.

I have an electric for 'adventures' and use the push wheelchair when i'm not well enough to drive powerchair, for Dr's appointments and short trips that aren't worth the hassle of extra weight . I would suggest getting one of each.

There is a website called 'benefits and work' that explains how to do the different forms.. but it costs money.. i have a subscription this year as my 'disease charity' hasn't written a help guide yet. A google search will bring up numerous help guides to explain and complete the forms.

good luck with it all.. navigating a new disability is a mine field and the forms never get easier.

Frugal_Fraggle

I'll see if I can find a local support group, it would definitely help him. Not found anything so far, but maybe once he starts going for physio for treatment he may hear of something.
Thanks for the tip about the bigger wheels being easier to push! I wouldn't have thought there was likely to be much difference! Although the first one will be whatever I can pick up really cheap, to see how much difference he feels it makes (I think it'll make a lot, he's not very convinced).
I'll have a look at the benefits and work website, it might be worth the cost to us for the first year so we know what we're doing!

Emmylou_2

The Benefits and Work website is DEFINITELY worth the money and this popped into my email inbox earlier (cut and pasted):

20% OFF ANNUAL MEMBERSHIP FOR CLAIMANTS AND FOR PROFESSIONALS - ENDS MIDNIGHT FRIDAY
If you’re not already a member, join the Benefits and Work community before midnight on Friday and you can get 20% off the cost of your annual subscription.

Just type the following code into the coupon box when you pay: 4452

Claimants and carers get an annual subscription for £15.96, down from £19.95. Professionals get an annual subscription for £77.60, down from £97.00.

You can read this newsletter online.

Mojisola

Frugal_Fraggle wrote: »

Thanks for the tip about the bigger wheels being easier to push! I wouldn't have thought there was likely to be much difference! Although the first one will be whatever I can pick up really cheap, to see how much difference he feels it makes (I think it'll make a lot, he's not very convinced).

You can borrow a wheelchair from the Red Cross for a couple of weeks - that will give him a chance to try one out.

Cyclamen

if you are a facebook user wheelchairs seem to be quite frequently advertised on the selling sites round here, so might be worth a look.

I also second the red cross for a loan chair.