to just not understand this attitude?

[Livinginaparalleluniverse]

Unfortunately my sister is in a wheelchair, the NHS provided wheelchair is functional, but too heavy for her to manovere by herself, and therefore she requires someone to go with her if she wants to go out anywhere.

The wheelchair she can use by herself is £1,000. NHS say they won't provide as they've done their bit and provided a wheelchair. My wealthy mother who for her £1k is a drop in the ocean, has spent 18mths battling the NHS to get this chair. My sister has asked my mum if any chance she could provide the chair, being very dependent is affecting my sister psychologically. My mum's attitude is the NHS should be providing the chair and therefore she refuses to purchase chair on principle not monetary.

Yes in an ideal world the NHS would have the funds to provide the best piece of equipment available, but we don't and that's the way it is.

My friend's son has a severe speech impediment and is waiting for speech and language therapy, but in their area due to staff shortage there is significant delay beyond the recommended 8 weeks. Again very wealthy, funds not the issue.

When I recommended going private, they were horrifed at having to, as why should they spend their money on something that the state should (and incidentally do provide just not in timely fashion)?

I just don't understand this attitude at all.

If you agree with them, please explain.

If you agree with me, thank you.

£1k is by no means expensive in wheelchair terms; a friend of mine has one which was over £5k (carbon fibre and exceptionally lightweight), provided AFAIK after a very long wait and lots of badgering, via the NHS.

Her family are extremely wealthy and could have paid for it but didn't. In a sense why should they? I entirely take MrsDeVere's point about seeing people with disabilities as individuals in their own right, not just as some sort of appendage to their parents. In the same way it would probably be considered that she should not have been provided with adapted accomodation by the council (which allows her to live entirely independently), but continued to live in her family home indefinitely...

Really a wheelchair which allows someone to live independently/grow properly/not develop pressure sores should be considered a 'basic'.

ninethreesix, this is where I find myself a bit irritated. An extremely wealthy family, badger for a state of the art wheelchair & get the council to provide an adapted home for a family member. If the family were so wealthy, why did they not sort out some kind of adapted accommodation for their own family member? Why should the council be providing this for the extremely wealthy?

DFG's (which provide adaptations) ARE means tested for adults.

When you are an adult your wealth is judged by how much YOU own, you personally, not by how rich your parents are. Why should people with disabilities be treated any differently?

explanation here about the means testing

PostBellum, she grew up in a home adapted by her family at their cost for her needs.

However as an adult she wanted (not unreasonably) to live independently. She was housed by the council in wheelchair adapted/ accessible accomodation - it had already been adapted for a previous tenant.

Honestly, why should her family have paid for that accomodation? I am sure in the absence of her disability there would be no such expectation!

How about the idea that people who can afford to get private therapies, buy their own wheelchairs, etc., do so in order to allow the NHS more resources for those who really can't afford what they need?

Lots of parents give their children help with rent and trying to pull together deposits for buying a home.

It is hard to tease out the disability, because presumably in the absence of the disability, there would be no need for adapted accommodation.

I don't know but I can't help feelings that we have sidelined the family in society today. I think we do have a responsibility to look after our family members - regardless of what age they are. I'm hoping that between my siblings & I, we will be able to provide as much care as possible for our parents & not just pack them off to a home. I think my ASD DS will probably need my support for longer than by the time he hits 18. I won't just palm him off to the state & say "Well, you are an adult now - you are someone else's responsibility". I'm probably not articulating what I feel very well - but I can't help feeling that an extremely wealthy family could have helped their own daughter live independently without the council having to pick up the tab.

It's not my understanding of fancier
Cog

fancier is when you buy a dress with a 'better' label, or a car with electric mirrors or suchlike.

Buying a chair that can be independently powered because the NHS won't provide, or one that you can use outdoors, or that you can use for more than twenty yards (extra light...( is not fancy, it's just REAL need versus NHS spec.

Once a disabled person hits adult age they should be assessed as an individual as everyone else, not forced to live as a child for funding purposes.

I will always do as much as I can for my 4 who have all got sen and / or SN, and at elast one will be with me always I suspect, but they deserve to become adults at 18 like everyone else. if ds3 wants to leave home and move into supported accom it should be his right and not based on my willingness to fund it.

After all, many NT people leave home and minimise contact with family, or just want to be as independent as possible. Disabled people should be on an equal footing.

I think the difference here is between wanting to help- I hope I can, I would like to be able to- and being MADE to help.

My parents never helped me, refused point blank; same with their own lives after leaving home. it might not suit me but it should be up to you what you do with your own income after the age of majority.

Although I'd just buy the wheelchair, whilst campaigning for chairs for other people to be easier to access.

I don't think it should be a right. I think it should be a goal, a situation you very much hope for, but not a right. I don't think anyone should have a right to live independently at 18, regardless of whether or not they can afford it.

I think we are guilty to some extent of feeling entitled but others more than some. There was the recent story of the lottery winners who still claimed benefits "because they were entitled". It's always said with a sort of whine, isn't it - "but we're entiiiiiiiitled.."

I have an acquaintance who has fortnightly prescriptions for her DCs for Calpol, nappy rash cream and the cream you get for dry skin (can't remember it's name). Her kids haven't got overly dry skin (by her own admission) but she gets it free so she "might as well". We are turning into a nation of chancers.

YANBU OP. I am not wealthy by any means but would stump up £1000 in a flash to give my DS a better life.

How is doing something for your own child = being made to help? Doesn't the impulse come naturally?

Most of the examples of 'this person did this to get a chair/adaptation/equipment for their child' on this thread are about children

People are lumping in dependent under 18s with adults with disabilities.

Which does not suprise me.

Lottery winners wouldn't be entitled to benefits - unless they were non-means tested ones. Such as child benefit.

I'm actually quite shocked by this thread.

If your child was diabetic and you could afford to pay for insulin would you, or would you expect the NHS to pay? If your child breaks a leg tomorrow, will you pay for the ambulance and hospital care because you can afford to or would you expect the state to pay?

My son's adult care bills will be 6 figures plus annually, adaptations etc could actually reduce those costs (by allowing more independence). Who should pay?

The person in the OP needs someone to push her in her wheelchair so she is tied to her mother's wishes. She should actually get in contact with SS and get direct payments for a full time PA. - It'll cost more than a wheelchair - but will allow her to live independently - she does have the right to an independent life (maybe some joint funding will be magicked up for a wheelchair that actually does the job and then she wouldn't need a PA anymore).

Something that allows someone to live an independent life is a basic and should be covered by the NHS or SS.

Exactly mrsdevere

And at the moment, I as ds1's mother am contributing hugely to his care. If I didn't care for him his current annual care costs would be over £200 000 per YEAR. Frankly the council or NHS can provide us with the basics that make our life that much easier so that I can carry on.

Actually I should change the insulin example

'if your adult child requires insulin will be you expecting to pay for it yourself?'
'If your adult child breaks a leg who will be paying for the treatment'.

You? Because you should help your children? Even when they're adults.

Type1 diabetics die if they don't inject insulin. Death & independent living are slightly different - surely?
If an adult breaks a leg, they get it set in the same way that a child does & in 3-6 weeks time they carry on as normal. No one pays for it, because it is free treatment through the NHS.
However, if I want to live on my own when I'm 18 - able bodied or disabled - should that be free?
I do not object in any way shape or form to people getting the support they need. I just am wondering if the extremely wealthy family needs the same support as those who are struggling. I don't know the answers - I'm just wondering.

I knew someone would say they die. But I think independent living is a basic fundamental right tbh. Why is getting a leg repaired a free treatment seen as essential while a wheelchair that is fit for purpose isn't? If you are able bodied you can live on your own for fre. You go out and find a landlord or buy a house and get on with it You are not reliant on your family at all.

If you are disabled you might only be able to live independently with adaptations. So if your 'extremely wealthy' family refuses then what? Tough luck you have no right to an independent life? What, ever? Or until they die and leave all the money to the cats and dogs home? Then you're officially poor and so allowed to have an independent life?

Anyway I stick to my earlier point. Anyone in this situation with a crappy wheelchair that isn't fit for purpose should go to social services and get direct payments. If they can't move the chair independently they are going to need pretty much full time carers going in and out. You may find someone decides the chair isn't so expensive after all.

No jimjams, no one should be left out. I just think family should do more if they can.
Is independent living a fundamental right? I don't even know exactly what independent living means. Do we all have the right to independent living at 18 regardless of whether or not we can afford it?

but surely every one is entitled to be able to walk? and having a usable wheelchair that is fit for purpose is the same thing.
of course a disabled person should be entitled to it on the NHS.

Most non disabled over 18 year old is not on the same level playing field as most disabled over 18s.

I wouldnt expect my DS1 to be provided with a flat and a carer to come in and help him with daily tasks because he doesnt need it.

If the only way my child could lead an independant 'normal' life was to be provided with a care package then of course I would expect them to get it.

The same way I would expect a child in care to be provided with the support they needed past the age of 16, to enable them to start adult life on an equal footing with more fortunate young people.

Because they need it.
Because we live in a civilized society
Because it is what we pay taxes for
Because their is leglislation to support it.

I think there are a lot of people on this thread who are enjoying the chance to have a little fantasy about how they would do 'anything' for their darling children. Floating away in a dream of what loving, wonderful parents they are.

I would also really like to know about this 1k wheelchair that is so different from the one the OP's sister already has.
I would also like to know why the WC service have yet to provide such a basic model.

We are not talking about a power chair. We are talking about a fairly standard manual chair. Why cant the OP's sister use the manual she is in but would be able to use the other one?

If the one she is in now is so utterly unfit for purpose I will reserve my outrage for the fucking awful services provide by her LA.