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.

Have you not read the posts explaining how much maintenance costs? or the posts explaining that the sister isn't being given enough support from SS. That's the problem when someone has significant needs - the costs do not go away.

My life is a lot closer to the mother's in the OP that most people on this thread. In that i do now refuse to pay for basics (such as the thirty quid a week from the care package - there was no way i eas paying for thst - whivh makes me a monster according to many on this thread). So nice to not begrudge us a holiday in 60 years.

I want to know why the OP isn't expected to pay, but the mother is?

Personally I don't expect to pay for basic services for anyone. Not myself, not my kids. Not while the welfare state exists and is being paid into by us. Nor do I expect my younger two to pay for their brother in the future. I do expect them to look out for him and part of that is knowing how to negotiate the system to ensure that ds1 is not short changed by SS or the health system (he will be given half the chance as the person in this case is). Ds2 already takes an interest and I have no doubt he will rise to the challenge.

I must admit I'm a bit surprised that parents of disabled kudos are expected to spend ALL their money before we're allowed to stop paying for things the state should be providing. We have been told that the state can't afford it. What about adults who end up on income support? The state clearly can't afford all these benefit claimants so should we stop it for those who have parents with spare money? Or would there be an outcry at that suggestion of parents supporting adult children. Hmm I wonder.

saintlyjimjams you are right again jimjams.
I think a lot of people just think you buy the wheelchair and problem solved.
It is far from it, bored by saying it on here, but you have..
Service.
ot assessment
insurance
Tilt test
repairs
if powered, replacing Batteries.
these are just the things i can think of off the top of my head.
I suppose the op's mum is supposed to fork out for all of that as well.

"I want to know why the OP isn't expected to pay, but the mother is?"
Because the OP has no money and the mother has lots is the clear answer to that one.

Parents of disabled kids are not expected to live the life of riley whilst watching their adult children have their basic needs unmet, needs that could easily be met by the parent. This is in no way the same as carer's being bugrudged holidays and its pointless and unconstructive imo to suggest that it is.

The welfare state is not designed to undermine families by absolving them of any responsibility to help their kin.

I think the government should be putting more money into helping disabled people and their families and not less and presumably jimjams you and I are united on this point at least.

I would imagine that having a disabled relative in a state that is not providing for their needs is often a politicising experience however I find myself alienated from your posts even though I think we both want more funding and support from the state for the disabled.

I am sure that you are constantly moving heaven and earth to help your child and I am sorry that you seem to feel personally judged by this thread.

2shoes - yes obviously the mum would be expected to pay for that too if the state will not provide and if the mother easily can

morally speaking that it

Saintly, I don't know what posts of the OP you have read, but you are possibly wrong to assume that the parent in this case can't afford the ongoing maintenance. While it is impossible to make a lot of hard and fast assumptions, I would be willing to bet that the OP and her sister and family are well aware of the ongoing costs associated with an appropriate chair, and that the NHS is also, hence the NHS refusal to provide one.

The realities of your life and the realities of the OP's mother's life are not necessarily one and the same.

The financial realities of the OP's mother and hers are also significantly different. Her mother's financial situation is far better than hers.

A bit more reading and a bit less projecting would go a long way.

In any case, you have made it clear that you have decided to pay out of pocket for certain services your child needs even though you resent it. Just because it is not fair hasn't stopped you.

It is also clear that the mother in the OP's case has no qualms about having a family member do her accounting for her when hiring one would presumably cost more than the OP is charging her, yet will not see that providing something necessary for a daughter might be an appropriate gesture.

I haven't had time to read the whole thread OP but does your DS receive the mobility part of DLA?

Yes and uses it for her adapted mobility car.

Ahh ok :)

No charities can help?

Family Fund?

I think sometimes they make big payments for special, really needed items.

This website looks helpful

www.disability-grants.org/

especially this one listed on there: www.mobilitytrust.org.uk/

and this one

independenceathome.org.uk/

Actually that disability grants website (note run by a mother) looks really useful, will bookmark it.

When I have some spare time (prob about 5 years time realistically), I would really like to set up a charity funding communication aids. If anyone has any contacts/interest then please PM me.

Weird picture on the front - and weird criteria ('gentlewoman'?) but this one as well - looks ideal.

eaton-fund.co.uk/index.asp

family fund is only for under 17's the op's sister is an adult

This looks helpful as well, and I'd advise following the link to the disabled living foundation they have an interesting looking factsheet on obtaining funding

www.firststopcareadvice.org.uk/downloads/resources/1399.pdf