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.

Working with adults in a residential home, I was always struck by the dichotomy. They generally had the equipment that they needed - and money for decorating their rooms etc. (These were people who would never be able to live independent lives, as they were life-long residents of long stay wards who were released into the community to units like ours. One man in particular, who had quadriplegic cerebral palsy, profound learning difficulties and VI, had never been out of bed before discharge. He was 45.)

They were all without family, and must have cost SS a huge amount compared to people with similar levels of need who lived at home. Getting hoists etc installed in private homes is unbelievably difficult, you have to have an iron will and a huge tolerance for incompetence to get funding.

That's what I mean when I say I don't understand why people don't just do it if they do have the money, because the sheer frustration involved in dealing with SS/ wheelchair services as a teacher and carer was unbelievable, working with them as a parent must double that!

post I think you are using the phrase "independent living" in a different way to how others are. The issue is not that everyone has the fundamental right to their own property at the age of 18, it's that disabled people have the same opportunity to achieving independence as an able bodied person. Independence is so much more than owning your own home /renting your own property. Having access to these oportunities should be a fundamental right, absolutely. That's why things such as the DDA have come into force.

Once someone turns 18 they are means tested in their own right for major adaptations to their own home. Doesn't matter how wealthy the parents are.

And MrsDeV I think maybe people are talking about their children in the context of them being the mother / legal guardian, not that they are still a child. I'm 37, but I'm my mum's child still surely?

Thanks redspottenfrog - I realised that I didn't actually know what independent living did mean as a specific term - so that makes more sense now.

Yes but crunchyfrog it's a never ending drain. I used to 'oh just pay for it'. Then we ran out of money. We have spent thousands and thousands on basic services for ds1. And remember as a carer your earning power is hit big time. We are now suffering big time as a result of our earlier spending on him.

It was enormous effort getting a DFG for ds1 - and it took me lodging and official complaint. What should have taken 6 months took 2 years. Mainly fro idiotic reasons such as me ringing saying 'why haven't you started, the 6 month legal time period has passed' and then saying 'the 6 month time period hasn't stated because it doesn't start until you fill in form XP34G34S'. Followed by me saying 'that would be because I haven't been given such a form and didn't know it existed, I did however fill in form CP467GS' which was some sort of application. 'oh yes we've changed the system, I can see someone forgot to tell you' .

We needed the DFG to actually prevent ds1 (literally) killing or seriously injuring himself. When he did damage himself during the 2 year wait I was told 'oh well at least he has demonstrated a need for the DFG'. And had he paralysed himself during the wait - then the state would have had a bigger care bill.

People should be getting angry with how difficult it is to access basic services, not with the odd 'extremely wealthy' family who expect the state to pay for their grown up adult children.

No red there are a lot of posts about how so and so bought something for their child. Not adult children.

I will always be a mother to my children but the law says they are adults when they reach 18 and they are.

I know quite a bit about fighting, giving things up, doing difficult things for my kids but I wouldnt dream of slagging off the OP's mother. We know nothing other than what the OP has written. BTW - where is the OP?

'Drop in the ocean' is a very subjective term to use. My DS1 seems to think me and his dad are rolling in spare cash. In reality we live on a low income.

I just think this thread is a bit of an opportunity for some competitive parenting. Hands up who loves their child enough to buy them a wheelchair 'oh me! Me! ME! ME!'

I am not including those with actual experience of the situation although there do not seem to be any posters with experience of doing this for an adult child.

OhDoAdmitMrsDeVere you mean a hypothetical wheelchair...
the thing is most of the people who post that have no idea about wheelchairs, they just think you just buy one, end of.
they don't take into account the fact that an OT needs to be involved, that it needs tilt testing, that it will need constant servicing.
that is why it is best done by the wheelchair service.
it is not the same as buying a baby buggy.
ss see over 18 as an adult, they treat all over 18's as an adult(quite rightly)

' I don't think anyone should have a right to live independently at 18, regardless of whether or not they can afford it.'

I do.

For a start I won;t live forever; I can therefore not care for him forever.

Far better for everyone if his move into wherever is managed gradually with my support around shopping / eating etc than he is shoved out into the community when he loses me (Note: I have no intention of caring past my date of death) and is in a state of shock and despair and then has to adapt to new setting on top.

I will not be asking his brothers to care for him; 2/3 of his siblings has or will ahve an ASD diagnosis anyway and ds2 is suspected ADD and deserves a life beyond his siblings.

See SMA that is what is wrong with western culture. You not expecting your DCs wives to step in and care for your DS.

How entitled

The concept that family care is pretty sadly erroneopus anyway

And you cannot base a system on it at all.

MIL saved every penny DH was ever given in birthday / baptism / gift money in an account for if he needed it for a house deposit; in fact it would have come in pretty handy when he became very ill and we lost the house.

Had she not spent it on a boob job anyway.

personally MrsDV I would expect anyone who chose to marry my boys to be sectionable

Although I am sure they will have changed (their pants AND general habits..) by the time being a pre-teen is a memory... no?

I wouldnt count on it mate

we are in a similar situation where we have been provided with a wheelchair that is very basic and the one I want/need to cope with the rural conditions of where we live is about £600 and we are having to save up for it. It does sort of grate tbh but I think if your mum has the money she should buy it

Maybe the OP's mother is saving for her old age?

wow how entitled, how dare she have an old age

SMA - just to qualify, when I wrote that I didn't understand that independent living is a term that specifically applies to disabled people. I thought it just meant independent living generally for anyone.

Having said all that, I'm not sure anyone has it as a "right" but I do think it is something that as a civilised society we should aspire to it, wherever it is possible. I don't know if it is possible to fund this & everything else. I worry about the future of health & social care in this country, as I don't think it is sustainable under the current format.

I endlessly wonder whether DS will be able to live independently and given that state help to date has been virtually nill, I don't hold out much hope of support that way. Funnily enough I do hope that DD will be able to keep an eye out for him after I am dead. Obviously, I won't be able to make her - but I hope she might.

If ds2 or ds3 were to look after ds1 after I'm dead they would be unable to work. Nor can one person provide the sort of care ds1 wil need as an adult. I hope he is able to make choices about his life - his brothers will be able to. There is a huge difference between someone who needs an eye kept on them and someone who needs 24 hour care.

In the OP's case a grand would allow her independence. A crappy NHS wheelchair means she is forced to be dependent on her mother. How woukd you like to be forced to be dependent on your mother as adult? (or even as a teen or pre-teen) - to do something as simple as moving? She should definitely ask for a care assessment (she's entitled to) and get some PA's - it will cost more, but hey ho.

Independent living when done properly often saves the state a fortune- resi care (and carers CAN only care for so long) is a ridiculously high cost- £2k+ a week easy.

In the OP's case, if the mum died and didn't leave the money to the disabled child (as is often advised) the absence of a proper chair may mean the difference between resi at £2k PW, a Carer at and £1k for a decent chair.

I wonder- turning this about- if Op posted in three year's time 'My Mum hasn't got any cash for her retirement because she spent it all on my sister' how many posts would dismiss her as irresponsible for not having the money put aside to avoid a pension?

jimjams, not sure if your query was addressed to me - but I did say in my very first post, that every effort should be taken to get the NHS to provide a wheelchair that was fit for purpose. I qualified that by saying that as a mum with financial means, I would also buy a chair - although I now realise that it is not as straightforward as just buying one.

I am so not saying that care shouldn't be provided - I just am wondering how it will be paid for in very general terms & if someone has a family rolling in cash - why on earth they can't help. Surely, I can't be alone in wondering how the NHS/ Social Service is sustainable long term, with an aging population, given that everyone wants to seem to pay less tax not more?

what are suggesting happens then?

acrers do need a break from the people they care for and those with the most severe needs need to have social experiences too. Are you suggesting they shouldn't?

carers

And just to qualify my posts, I am carer (main one) to ds1 / 3 maybe ds4 and we have no input from outside agencies; also I help Mum care for my elderly Grandad when I can, Sundays mainly, a 91 year old who receives 30 minutes care a day from a council funded carer plus lots from family, and hasn't left home in weeks due to a wheelchair having been provided that Mum can't push. I live in Wales and she doesn't so I cannot help more, and Mum has some mobility issues herself. Grandad is refusing to allow a placement into a sheltered housing unit and refusing to pay for more carer input so Mum has been left with the responsibility and sheer slog of caring for someone in another town with no car.

Post, I for one would be happy to pay more tax if it went to care / NHS / disability provision and not towards the subsidised meals in the HoC, fancy lighting under the motorway bridge 9blue, for a sports even we had here years ago), Titian paintings (Diana and Actaeon) and the Olympics.

Agincourt, if you are asking me - I don't have all the answers - but it sounds to me like we all need to pay alot more tax. Or maybe there are other solutions. I'm sure it can't be simple - otherwise someone far cleverer than me would have come up with the answer.
I really, really don't know - hence all my questions.

MrsDeVere -- the OP mentioned two examples of people who had frustrated her.
One was her mother, and in this case the person needing the wheelchair is an adult offspring/child, however you wish to call her.
The other example was friends of hers, whose child needs speech therapy, the therapy will be most effective if it is done within a certain window of opportunity, and the parents are instead going to wait until that window will most likely pass, because they want the NHS to provide the therapy.

I come from a large extended Irish family that gets together and chips in when members are in need. Both sides of the family chipped in to allow my dad to live in a decent nursing home after he had a stroke (and to secure a wheelchair for him). Years before, the family chipped in to support another family when circumstances required. Irish welfare and public health services, and especially care homes, are not something you would throw your nearest and dearest upon if you had any alternative.

That said, if individuals have a legal right to independent living, and since it makes so much more financial sense to allow this, perhaps the solution is to weed out the huge management problems in the NHS that serve to waste money and thwart the efforts of people to secure what is rightfully theirs?

Private SALT is £50 - £75 an hour plus - it's very expensive - hard to afford even for those on good salaries.