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.

This is what gets me - ds1's talker will save the social care system money in the future (potentially a lot of money - potentially a lifetime cost of millions). They should be falling over themselves to fund the bloody things to people like ds1!

Saintly apparently that's what our moblity is for . I can't use my manual to go 15 mins up road( school. Run) well I can but then my as spasm and can't do sfa rest of the day

But after being told I have to use indoor chair for 6 months to proove I can use one !! ( this is despite me already using a very old 2nd hand one ) and then I may have better one if qualify ( waiting list average 18 months ). But chances are not qualify( after seeing nHs offerings I'm going with my own

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Oh FGS human that's ridiculous. And anyway a car/mobility payment is hardly the same as a chair giving outside mobility. Outrageous.

My concern would be that even if the mother pays for the wheelchair, that's the tip of the iceberg. Every time I get a piece of equipment that will make me more independent I think that's it, I have all I need. And then a few months down the line there is something else.

My parents have probably spent thousands helping me live independently. I can honestly say it does infantilise you. It feels like shit. It ruins family relationships due to jealousy. It takes away your dignity. It can even lead to abuse within the family.

There are so many other difficult things about my disability, one of them being that I feel inadequate that I don't (can't) work and pay my way. Going to my parents, who incidentally are retired, and asking for more money is so hard. If they hadn't paid for things like my wheelchair and mobility scooter, the nhs wouldn't have. I asked. Thanks to my parents I have some sort of life. It's very different to the one most people live, but there are good bits in it which there wouldn't be if I didn't have the equipment I have. I would literally be stuck in my house 24/7. I wish I hadn't had to ask them though.

Disabled people should have their needs met by the NHS regardless of how much money their parents have. I think that if an individual has their own money they should get their own equipment, bearing in mind that the NHS is in dire straights. But as a general rule, people with disabilities should be helped to live independently. Because, you know, then we end up being functioning members of society, paying taxes and contributing. The OP hasn't said why her sister is in a wheelchair but there is a good chance if she had the right wheelchair she could work or volunteer.

So, the converse of the parent helping their adult child is to watch the state fail to properly provide a suitable wheelchair for your adult child, and then for the parent to choose not to adopt a backstop position of being a last resort to help the adult child.- on the grounds that to help the adult child would be to infantalise them, which would be worse than to ease their daily suffering by providing the appropriate and needed wheelchair. And would be an endorsement of the state's failure to provide.

I think this is the correct approach only if it is the preferred approach of the dd who needs the wheelchair. Is it?

If you have your own money absolutely Worzels- one of the principles of equality should be that it is means tested on individual income: all the working disabled people I know contributed at least towards their chairs. And ended up with some pretty cool ones: indeed it is a standing joke with my friend who has a very high tech chair for me to wind him up about getting the DM on his tail for spending public money (he paid for it entirely).

Say your adult child has addiction issues? Would you delve into your savings to pay for treatment, knowing that you'll probably have to fork out again and again and again?

And how exactly can you compare an addict with a person who needs a specific wheelchair?

In the case of setting up a charity website or soliciting donations some other way, I for one would feel that I had been deceived if I contributed to the cost of a chair and ongoing maintenance and found out later that the mother (or any other relative) of the person with a disability could have afforded to pay and provide maintenance herself but just wouldn't out of principle or because her offspring is an adult and her legal duty is now done.

Worzelswife, the sister is paralysed and brain damaged to some extent after a virus. The chair she needs will have to be able to prop her up on one side or she could fall out. Being trapped inside the house has made her depressed. She apparently does not feel that having a parent help out would infantilise her as she has asked her mother a few times if she could see her way to providing a chair. Either that or she feels that anything is preferable to being stuck in the house and completely dependent on her children and DP for access to the outside world and the ability to navigate for herself once out there.

I compare to an addict because the state help available will probably be inadequate. So why wouldn't you help if you have money in the bank? Or is it only parents of disabled adults expected to hand over their retirement fund?

As for feeling deceived if you found out the mother could pay. What? Is an adult disabled person not a fully functioning independent person, but an extension of their mother. What even at 40? Is it only able bodied people who have the luxury of gaining full independence. Are we in 1950? As an adult the relevance is whether the person themselves can afford to pay.

I hope you'll be paying your adult children's mortgages and car loans and food bills and holiday funds.

jimjams it is plainly different to offer to help your adult children with their needs as compared with their wants

If adults want to turn down help offered by their parents it is their perogative and would be respected by anyone on this thread.

What is not respected is a parent who would not offer to lend support to an adult child incapable of fulfilling their own needs due to misfortune.

Is "full independance" better satisfied by having a life uneccessarily dependant on others on a day to day basis because you don't have the right wheelchair, or is it having the right wheelchair paid for by a parent.

I would argue that only the person who needs the wheelchair is entitled to make that call

Well presumably the person in the wheelchair would prefer to be independent of their parents and have their basic needs met by the State. Like everyone else.

When do you expect parents to stop paying? When all their money has run out or before? Are they allowed to go on holiday and cruises or should they be using that money to buy basic items of equipment for their adult offspring?

Given that after about 8 years of funding ds1's basic services we ran out of money when we've managed in 10 years or so to save some again are we allowed to spend that on ourselves or should we just fill the care gaps again? Given that we haven't had a holiday in the 10 years we've been funding disability related needs are we ever allowed one again or are we not actually allowed to save or spend money on ourselves?

Do you see it's never ending?

Saintly, we obviously have completely different ideas of what the term family means in practice.

A parent of an adult addict should help if he or she can, to get the best possible therapy for their adult child. A parent of a disabled person should help if he or she can, to get the best possible quality of life for that disabled person. To me it is a no-brainer. The idea that there should be any distinction made between under or over 18 yo offspring or between different conditions where the NHS will not provide adequate help does not occur to me. I focus only on the need, the lack of response, and the ability of the family to help.

'Is an adult disabled person not a fully functioning independent person, but an extension of their mother. What even at 40?'

Answer: NO she is clearly not a fully functioning independent person, and have you read the problem? This adult is not a fully functioning person, but with the help of her mother she could be, and she has asked her mother for help. Not because she is an extension of her mother but because she is a prisoner in her own home and therefore of her own disability.
Duh.

How is it ok to be completely dependent on her DP and her children but any form of help from her mother must be avoided at all costs?

With a sensible wheelchair she could be. That's a basic need. Basic needs should be met by the State.

I have already said that SS are failing completely in their side as well, and that her children should have their own carer's assessment (can child carers? - they should have some form of assessment). That will be easier to tackle (as I said maybe her sister can help) as there is legislation supporting this.

I am interested in when you think parents should stop paying. Before or after they run out of money?

And given that many people on here think that elderly people shouldn't use their own money to pay for nursing care, I'm surprised that so many think that parents should continue to pay for adult offspring indefinitely if they happen to be disabled.

Wouldda, couldda, shouldda -- she remains a prisoner in her own home and I hope she isn't holding her breath waiting for the NHS to stump up her chair. Or holding her breath while she waits for repairs or battery replacements from time to time.

Parents should stop when they run out of money as they have no other choice at that point. Another no-brainer.

I have no objection to elderly people being given the free care they have paid into all their working lives. What I have an objection to is the horrible quality of that care. In my own family, after taking a look at what was on offer for my dad for 'free', the decision was made to pay for what he both needed and deserved and go private.

What, they should spend ALL their money before they stop paying for basic services. Really? All of it?

When ds1 finally goes into adult care services I'd like a holiday thanks. We haven't had one in the ten years we've been paying for disability related things so far. Am I never to have one?

If the basic services are not being provided by anyone else, even by those who should, i.e. the NHS, should the person who needs those basic services therefore suffer? Could you really stand by and watch that happen? To your own child?

but when do they Stop math , that wheelchair will need new batteries new tyres servcing what if it breaks down ? who replaces it then

becuase once you have a powerchair it is miserable not having one

They stop when the NHS stumps up for one or when the child no longer needs one? Obviously if a family has no resources then it wouldn't be possible to provide anything, but for a family such as the one the OP describes the ongoing maintenance would be affordable.

I believe the NHS should do its duty here and underfunding and terrible management are a betrayal of the taxpayers, but I think that family has a duty too when the NHS decides for whatever stupid and shortsighted reason that it will not do what is really needed. I think families should be humane at the very least.

But this is not a child we are talking about this is an adult .

But we dint know if she can afford on going costs , your looking at around £1000 a year in costs to keep powerchair running especially being 2nd hand and she be looking at more than 1k for a powerchair be in all the time

And when dies her mum stop when she spent all her money or when she starts going without or when no longer has any money to do the things she wants

Yes it be nice if they can help but no I don't think she should have to . As an adult I'm not going to go asking my mum

Oh one of those disabilities that disappears how handy.

Most disabilities (of the type that need ongoing state support) do not disappear. As a mother I believe I do better by fighting for the support my son is entitled to so his lifelong care is not reliant on us. And forgive me but I'd rather have sone money to spare.

So when SS tried to cut his care package in the summer I:
(1) videoed the effect of the changes on ds1
(2) put in a complaint copied to the MP, the head of SS and original SW who put together the care package
(3) researched and found out the changes were illegal and told SS this

What I made very clear was that I WOULD NOT make up the shortfall. It would have cost us about £30 a week which might not sound much but add it up year in year out and think about the principal of SS behaving illegally. Remember I save them 200 grand a year in care - they can afford thirty quid a week.

I do pay for extras for ds1. I pay for surfing which has changed his life. But because it is expensive and many who would benefit cannot afford it (it's expensive because it's 1:1) I have applied for and secured funding from the council short breaks budget meaning others can go. I pay for extra SALT which is what led to ds1's talker (and the SALT does us a very good deal - basically she's working with us because ds1 fascinates her). He has SALT at school as well so yes this is an extra. But I WILL NO LONGER pay for basic services. Call me mean spirited, call me cruel. But you have not been in the situation of knowing that your child will never achieve any form of independence. You have not been in the situation of knowing that for every 5 grand you throw at disability there's another five that you could. And all will help. Remember as a carer working options are extremely limited so you can't just go out and earn more cash easily to pay for all this stuff. Yes I want to support him, but I am not a martyr, nor will I leave my other kids to suffer by pouring money in to stuff up the fracks in state support.

Anyway as a result of me kicking off in the summer they backed down. But NOT JUST FOR ME. They backed down and stopped trying to cut the care packages of all the kids with complex needs in my city.

Oh yes I'm such a cruel mean mother. In ten years time I'm planning to spend some of my money on a holiday. I may even buy myself a surfboard before then.

And before you start waving your arms in the air about councils paying for surfing. The short breaks budget is to provide activities for children with disabilities. Last year i was sent a 15 page newsletter of activities for the summer. Ds1 couldn't access a single one. So surfing has been set up for and aimed at children like him. So there'll be one activity on the list they can have a go at.

That money can only be spent on activities for disabled kids. It has not affected other budgets.

Oh I love those council leaflets JimJams

DS1 did attend one of those groups, alledgedly with Sn provision. In a week he was mugged, locked in a toilet and had his lunch stolen.

DS3's group is brilliant and under same scheme but there is NO WAY ds1 is going near that group again; which means that because we can;t access short breaks provision we can access nothing at all. just becuase ds1 now attends an ASD Base does not mean SSD care!

But so many people resent the provsions.

"Well presumably the person in the wheelchair would prefer to be independent of their parents and have their basic needs met by the State. Like everyone else."

Err no, this is not like everyone else. A lot of adults are happy to accept help from family members.

And the point is that if you are in a situation where the state is not meeting your needs and you cannot meet them on your own I think most adults would be pleased to have these needs met by a willing family member rather than unmet by the state.

Jimjams you clearly have your own agenda here and are trying to map this thread onto your own life, which sounds very different to the situation in the OP. I don't think the general public would begrudge any carer from having a holiday but this is so not the same as a rich parent, who is not a carer, choosing not to shell out £1k for a wheelchair that could transform the life of their child and a wheelchair that the child would gratefully accept if offered.