Cannot visit dh in hospital with cancer because we have a disabled child

[ZZpop]

Dh has cancer and will be having hospital treatment in a hospital 2 hours away for a few months and is likely to be during school holidays. We have a severely autistic teenager. We have been given support in the home but have been told that because of ds's needs I am expected to be there all the time which means outside school hours I cannot leave the house unless ds is with me and I cannot visit dh.
AIBU to think this is unreasonable?

I doubt it! I don't know why people think it's easy to get respite it isn't ,it needs assessment ,s then going to panel and agreement and then 'the endless wait until a place comes up m

At the end of the day this young man has been assessed as needing 2:1 care… he’s being given 2:1 care and they shouldn’t then insist that mum also has to be home 24//7….. I would argue that if he’s ok with 2:1 then I can go out…. If he needs 3:1 then need to supply a third cater a couple of times a week to enable mum a break… whether that’s to visit her husband, have a
coffee with a friend or a massage is non of their business…. But the level of care he has been assessed as needing should be funded and provided…. For at least part of the week to provide some time for mum….

If mum doesn’t get much needed breaks she will burn out and then they’ll have to find 24/7 care.. so providing the right amount now is preferable and they need this pointing out to them …. I’d start with a written formal complaint stating the threats they’ve made, the fact he’s been deemed as needing 2;1 but then them insisting on 3:1… they either need to supply 3:1 or supply more capable carers that can cope 2:1!!!!!

Why do people always come out with this stupid suggestion ,there are thousands of families around the country wo.are desperate for respite care ,what do you imagine might happen if we all old socisl.devices we can't cope ?
it's really not that simple🙄

Lol you live in cloud cuckoo land I'm supposed to have two nights a month respite care for my son it was agreed before Xmas I'm still waiting ,they have had to recruit staff,and that takes months ,my son was moved up.the waiting list in February,because my oldest son was critically ill and in intensive care ,we haven't even been to see the respite place yet ,it's laughable people think it's so easy to get respite.

I hear you, @ZZpop

Just to clarify, at home outside school days/hours your son usually has 1:1 or 2:1 care, provided by you and/or your DH, except for a small amount of overnight away respite? While your DH is in hospital 2 carers are being provided outside school days/hours but you are also being required to stay at home then, meaning that the care ratio is 3:1? Is that all correct? If so, and your son has been assessed as needing 2:1, then you should be able to go out if you feel your son will cope with you not being there - perhaps he will need some time to get used to the carers and they him - and if you have trust in the carers.

Of course it's not at all unreasonable to want to visit your DH in hospital and to know that the level and type of your son's needs mean that it is not in his or anyone else's best interests to take him with you. I understand that you would usually plan to visit DH while your son is at school but during the holidays this will not be possible if you are required to stay at home as a third carer. I hope that, with support, you are able to get this requirement reviewed and dropped.

Being pragmatic about it, would you intend to drive to hospital and does your son travel in the car ok, perhaps in the back seat with the support and security of a Crelling safety harness? If he would be ok or even enjoy the drive, could you get the agreement in place for the carers to travel with you and stay in the car with your son, with some snacks and toys for an hour, while you go in to visit your DH? This has worked for me, albeit with the help of a trusted friend rather than paid carers. Would friends or family help you by doing this, if the carers won't? Even if just once a week it would be something, alongside daily virtual visiting.

The treatment of unpaid family carers in the UK, but especially in England, is something the government, services and society should be ashamed of. It seems that the will and money is there to pay - often private, profit-making companies - for severely disabled children and adults to be hidden away in sometimes completely unsuitable and abusive secure hospital and residential settings for months and even years on end. If unpaid family carers received timely and proper support at home, this could often be avoided.

All the best to you and your family, OP

For a friend neighbour or family yes - obv not every day as I work and have dd6

but I would def over to help as and when I could

if working no obv I would want to be paid as that’s my livelihood and pays my bills

My understanding of the law on social care is that one of the underlying principles is that carers are entitled to have a life of their own. So they can't make care conditional on you being there. What would they do if you were ill, for instance? Or if you had to work to keep a roof over your heads? It's particularly ridiculous to attach this to a threat that they would take your son into care when they admit they don't have any care placements available.

I would suggest consulting solicitors who specialise in community care and offer legal aid, e.g. Irwin Mitchell, T V Edwards, Leigh Day, Simpson Millar. You may be able to get legal aid in your son's name if you don't qualify.

I know it's not a quick answer, but is it worth looking for a residential school placement, maybe a 52 weeks a year one?

As well as going back to social care for more support have you looked at continuing care funding? It won’t provide support quickly so won’t solve your immediate problem however, it is worth getting the ball rolling for further down the line.

Have you any idea how long it might take for a residential school.even if it's agreed and it's in the best interest ,s of the Ops son??'
even after it was agreed for my friends so to have a residential school lace it too over a year for a school.agree to assess him and decide they could meet his needs and it's a six hour drive away
I know posters are trying to be heloful but it's very clear many people have absolutely no idea about how hard it is, to get what a disabled child needs

Shouldn't you get this thread removed to the special needs board?
This is not an aibu matter and you won't get what you need on here.

Also op:
Are you sure you have understood the treatment properly?
You are talking about a few months stay in the hospital for your dh? Surely it is a few weeks at most?

"Just to clarify, at home outside school days/hours your son usually has 1:1 or 2:1 care, provided by you and/or your DH, except for a small amount of overnight away respite? While your DH is in hospital 2 carers are being provided outside school days/hours but you are also being required to stay at home then, meaning that the care ratio is 3:1? Is that all correct? "

Yes that is about it. At school and respite there are more staff available but at home it is just me and dh. They want me there to manage behaviour which I get at first - I can read his behaviour better than anyone - but there seems no moving on from this. I am the expert on his behaviour but only when it suits them.

If you’re home with two other carers, what would happen if you left the house and drive to the hospital?

"As well as going back to social care for more support have you looked at continuing care funding?"

This is cc funding. They are being worse than social care.

You shouldn’t have to, and it won’t be quick, but have you asked for an independent review &/or complained to the PHSO?

Have you any idea how long it might take for a residential school.even if it's agreed and it's in the best interest ,s of the Ops son??'
even after it was agreed for my friends so to have a residential school lace it too over a year for a school.agree to assess him and decide they could meet his needs and it's a six hour drive away

Our LA agreed to a residential placement in the last week of the autumn term (DD had already been assessed), and DD started there in the first week of term after Christmas. LAs can make decisions very quickly, when they want to! The biggest problem would be the residential school being able to provide 2:1 or 3:1 care, or whatever they assess is needed, given the current shortage of care workers!

Let’s just ignore … I question the mental maturity of anyone with 007 as part of their user name!

I have a disabled child so I do have an idea of how hard it is actually

I was responding specifically to OP, who said "we have been bullied eg told that if we ask for more support, our son will not be allowed to live with us"

OP has been scared off pushing for her and her DS's legal rights with empty threats of removing her child! And my advice to OP remains the same - let them threaten, don't back down, don't be bullied into anything by their bullshit threats. They can't and won't actually do it. But once they realise OP isn't going to just roll over and give in to their bullying tactics, they will have to engage with the actual issue here which is their failure to provide adequate support for a family in crisis.

I know it won't change anything magically. I know there are long waits for everything. Good old backlog Britain But standing up to those threats and making it clear that they don't scare you is really important. Only the parents who are prepared to fight get anything at all for their children now.

This is cc funding. They are being worse than social care.

DD now has CHC funding - at home, as an adult, she got one carer 10 am - 6 pm, when I was there. If I had an appointment, they provided 2 carers at our house for her. One afternoon at a weekend, they provided 2 carers for 4 hours, so we could go out for respite.

I suggest you ask the ICB for an urgent review, as you need more carers for DS, while you visit DH. If the ICB ignores you, DS can apply for legal aid, with you as a friend in litigation (seek advice from the firms of solicitors as per a pp) with a view to a S21a action in the Court of Protection?

@BoobsOnTheMoon totally agree.

EXPEVT a residential care home will
cost a minimum of £1500 per week.

far cheaper for them to supply staff to support an individual living in their own home. And op needs to fight (shouldn’t have to but needs to)

Yes that's my point! They're not going to take him into care. Not a bloody chance, not unless he is actually in danger at home and tbh possibly not even then. But the only way to force the respite issue is to stand up to those threats and make them ineffective. As long as those threats are working and keeping OP from fighting, they'll continue to be used against her.

£1500 per week? A care home for 2:1 care is likely to cost £250,000 plus pa. 3:1 even more!

SS told me recently care for DD, with her complexity, could be £5,000 - £6,000 a week; and the ICB would have to pay it!

Sorry, I just checked - S21a action can only be brought atm for people under DOLs in a care home or hospital!

Agree it would be more than £1500, friend of mine runs care homes for kids with needs and when they have children who need 2:1 it’s between 20k and 25k a week they charge. Crazy amounts of money!

hlad You find it hilarious

I know that was your point… and I started my comment with ‘I 100% agree with you’