Terrified about son's future

[Opp]

Through my work over the last few years I've become aware that (witnessed) some wheelchair-bound disabled and dependent people who live alone with no family support receive only two visits a day to get them out of bed and then back into bed (often at times they are not happy with) They are left on their own all day and don't get to go out, sit in pads all day, rely on cold food left that they can just about get to their mouths (nothing if falls on the floor) no physio, nothing. They are just existing in one or two rooms. Sometimes they're left in bed all day.

Whereas some people equally disabled have carers around them all day, get out, have physio etc. All of these have NHS packages.

How do these scenarios happen? I'm terrified for my son who is 18 and a very disabled wheelchair user due to go to uni next year. I want to ensure he does not end up in the former scenario. I do not want to be his carer and he doesn't want me to be his carer. I'll be too old to do it for much longer anyway.

He wants to live independently and may in the future want to move to a different city, he loves London. He will be going to uni next year and the package offered looks good for this, but what about afterwards? I want to spend the competent time I have left to help him get set up and try to learn skills like assertiveness in directing his own care (he find it really hard to ask people to help him) I want to do all I can to make sure scenario one will never happen and would like some true life advice please.

Do CHCs make much difference? We had an assessment months ago and still haven't heard back. I need to chase and will appeal if denied and if it's worth appealing.

I think a lot of it depends on who the cared for has in the background sorting things out for them.

I don't do a lot of obvious care for the oldies in our family but I do a lot of the things that ensure they get help in place like applying for benefits and arranging meals, assessments, cleaners and carers.

I have a disabled son who also has learning difficulty - we work hard in the background. If your son is going to university and planning to live in London then I think he will be able to fight these battles. What I have learnt is to concentrate on one day at a time rather than catastrophising about the future. Be happy for your son and his plans. I can imagine he would be horrified to think you are imagining his future in this way.

He/you should contact the university to find out what of support is available for disabled students.

Try and think of all possible things, getting to lectures, where he will be in Halls (Ground Flr or a Building with a lift), a Personal Assistant (PA) to help with note taking etc. Will your son need time to go to hospital appointments, how will he get there, if there is a train strike how will he get home, will he have his own car and where can he park etc.

Don't forget to find out what counselling is available and access to GP.

As for the later stuff, has he any trusted sibling or close relatives who maybe able to deal with certain admin or Social Services for him. Find out where your local Carers Centre is, and get more advice for future planning.

You're right, family support seems to make such a difference. He has a younger brother and I'm hoping he will check in on him and keep an eye on what's going on. Sometimes it's hard taking him to visit family because of access issues and easier not to go but it's important to make the extra effort

He would be, you're so right. That's why we never go near these things with him. His confidence and resilience in the face of continual barriers and rejection is what keeps us all going, he's pretty amazing really. We never want him to lose that. He's naive and hates asking for help which on one hand is lovely but it turns my stomach because he just doesn't seem to understand how to manage his care and puts carers ahead of his own needs. He'd rather go hungry or whatever than "disturb them".

We're pretty confident with the uni care offer and he already has counselling which he find helpful, but there's a black hole beyond that, I'd like him to be able to choose where he lives but as far as I know he'll be at the mercy of council accommodation because private sector rentals are not wheelchair accessible and as far as I know there's still no product that will enable him to use his benefits to service a mortgage, even though it would be cheaper for the gov in the long term for him to be allowed to do so. And I am worried if I bought him something / bequeathed him a property he'd have to sell it to pay for his care. Last time I looked into this (admittedly several years ago) housing benefit and adaptations were only possible in rentals which were specifically not connected to the family which seemed absolutely ridiculous.

Depending on where he goes to University, a ground floor flat should be accessible. Council accommodation as you know is very limited and also has long waiting lists.

With a Housing Association, he might/should be allowed to make essential adaptions. Your problem will finding the right HA, that are ready to accommodate the adaptions and responsive to handling any problems that might occur.
Re. Buying, you might be able to put the property in trust for your son. In which case, this will not be considered as part of his assets, I think as the law stands now.
But, that raises the problem of where you live.
You will need to speak to a solicitor that understands trusts, I was going to suggest MenCap for information, but, SCOPE might be better. They have a fabulous website. The posts by other users got me through my will and trust documentation.

It would be a good idea to look at My Safe Future (Google them) who help & advise families on how to set up for the future of disabled adults. There’s also My Safe Home which helps disabled people into accommodation, Advance Housing and Support are also a great source of help and advice. We’ve used these companies to set my physically disabled daughter up in her own home with carers visiting to help her live independently.

I'm no expert on NHS care but I think the difference is whether you get care on a medical pathway or a social pathway.

my v amateur understanding (which may not be right so dont assume it is)
is that if you need purely social care - help with cleaning yourself, toileting, feeding - that is the 2 or 3 calls a day job until you cant manage like that and then social service who dont provide 24 hr care at home will move the person into residential care and if they have any money or a home, take it all to fund the residential care

if you need medical care which may also include toileting feeding etc but say you have a medical condition that needs medical intervention - so more of your care involves medical care than social care - then the NHS will provide 24 hr care at home.