To despair about respite funding and the ridiculous rules for our adult disabled kids

[Noras]

My son goes to university and lives at home. He is aged 22. He has 40 hours a week commissioned social care to get to university and I get 7 hours per week direct payment Saturday care.

Often we don’t use the respite care as we take our DS to the cinema or to national trust properties or to the theatre or we stay home and have friends around or take him to friends homes.

However I am not allowed to accrue that funds to have a Pa look after him 24/7 to go on a short break or a holiday. Instead they claw back the money and expect me to go and beg for the funding to go away with the dates of the holiday to social care panel. I have to book the holiday in the hope that I will get funds for his social care in our absence in a wing and a prayer.

i would prefer to accrue my 7 hours weekly ( already agreed so cost neutral) and organise my own free time to have complete weekends or weeks off to have quality ‘adult’ time with DH.

I just can’t stand being a carer anymore and want out. I get carers allowance and get taxed on that. Then only reason that I do care is to allow son to stay in the comforts of home and to not institutionalise him.

Ideally I would refuse to care, he still lives ay home and all the burden goes on social services for all his care and I become a free agent to come and go as I please and not beg for time off for good behaviour like a trapped prisoner. This is almost like slave Labour and it’s enough.

i have cared for parents - it’s completely different and there are different motivations.

With adult kids we do it from fear of what becomes of them.

Why can’t I accrue my respite weekly hours instead of having to beg for time off for holidays. The admin time for social services of all these funding panels is crazy and also it takes time.if I want out every Saturday evening it’s the same cost as me accruing the hours for several weeks and taking eg a week off.

On the face of it, your request seems totally reasonable.
It must be very hard for you.

I would love to see the comments of folk who think you are being unreasonable.

My nine year old son will need life long care, ASD with a very serious learning disability, zero danger awareness and extremely little receptive language. I already know how from the shitty fucking shit cunty offering from my local authority at present for supporting us to sustain caring for him that is not going to get better in adulthood. Equally him having been abused and wrongly restrained in one of his funded holiday provisions, neglected at school and allowed to elope onto a busy road at least once, leaves me unable to fully imagine just telling the LA that they will need to house him at adulthood. Sometimes the only thing getting me through the next 10 years of it being primarily my responsibility to suffer through this is knowing that I could potentially have my life back - eventually. It's a horrible place to be in, and the sense of guilt for having these very normal feelings isn't helped by petty LA's and I would advise people voting unreasonable to actually put yourselves in the OP's shoes.

OP, you could at least complain about this to your councillor/MP. I doubt they will be able to do much but it will at least keep raising the profile of these issues.

Given that you have managed to jump through the extremely restrictive hoops needed to gain any respite for your DS, it would seem humane to let you accumulate the allocation into something that works better for your family. After all, you're probably saving the state a fortune by the care you are providing.

As things stand I can’t bear the stress and strain of wandering if and when I can have a weekend off or my annual holiday.

I am just too old for all this. I’m now in my 60s and have done my fair share of care for him .

It’s cost neutral to social care but they seem to want to control me or tell me if and when I can have a holiday or weekend away. I just do t get their thinking. The whole process of giving me the budget / clawing it back and then holding an assessment and panel to give it back away in is administratively perverse and a waste of everyone’s time.

Also if they refuse me my holiday I will just dump my son of at the council house with one of the flipping councillors and go on strike - that is it.

They can shove their carers allowance up their arses the Gov. they tell us is not a wage or compensation but an acknowledgment of gratitude or a token but then they make it taxable. We give up our lives for what - £60 or less pounds per week if we pay tax - what’s that? 8 glasses of wine?

They are relying on the love we have for our adult kids and it’s almost coercive control or emotional blackmail. If my son was not at university and also so vulnerable I would move him into independent living with full time support but he is so vulnerable and needs stability. We don’t use the Saturdays that often as we want him to spend time with us and have good quality time.

Equally I see prison bars and have had panic attacks all afternoon and evening. My friend has come over to help me as I was feeling so unwell with panic attacks and feelings of imprisonment. O jist go to a really dark place for a brief period of time.

As it is I feel tagged as I can’t go out in evenings and my DH is quite senior in work and never home before 8.30 at best and at worse is overnight in London or Birmingham etc.

I look forward to my holiday and a weekend or two away off duty with adult time with DH.

There was zero respite until he was an adult - we were clinging onto sanity with our finger nails. We paid for ‘babysitting’ now and then when he was 16, 17 etc It was absolutely crazy.

I’m a PA who is paid by direct payments. I often have my client for long weekends, and once a year for a full week whilst their parents go on holiday.

That sounds tough.

Couldn’t you come to an arrangement with a trusted PA that you pay for each and every Saturday even if you don’t use their services and they accrue unused time for you to go away for a weekend / on holiday?

That way you’d be accruing as you suggest but just in the other side of the fence: with the PA instead of with the local authority.

Strength to you. The system feels designed to punish us parents of disabled children. And then the general public seem to resent us too if you look at half the threads on Mumsnet.

I will be in a similar place to you in 18 years (my severely disabled child is currently 4, with a developmental age around 15 months). I’m already so tired from how everything big and small is a struggle, from getting him dressed to trying to secure a school place for him.

You have done amazingly to get this far. I know we don’t have a choice but to keep going, but that doesn’t diminish the fact you did it, you kept going.

I wish I had advice for you about the actual practical problem you’re dealing with but respite is something still in the future for me. All I can say is the system around disability is a total nonsensical bastard, it’s been crazy, cruel, and inefficient every time I’ve come into contact with it, and you’re not imagining it. Solidarity.

It’s really hard to recruit a PA hence we use an agency. They can be unreliable. Hence we use commissioned care to guarantee.

I love my DS he is so fantastic but I feel imprisoned as he is better placed at home and needs stability but I want all this to go away: be magicked away.

I dread when he finishes university and they cut his hours during the week - I hope he can be found volunteer work or sheltered work to keep him on teach day with support. I hear horror stories of hours being reduced to 3 days per week social care and some respite.

No one talks or plans for the future - my DH parents died on their late 70s so at some point o want clear time to enjoy our lives.

It sounds completely shit, you have my deepest sympathies 💐

Definitely worth a meeting with your MP, I know it’s yet another tiring job to add to your load but you never know it might be worth it.

It’s a great shame, when I worked in adult social care in the early 2000s until about 2018 there was so much talk about person centred planning, personal budgets, individual budgets, individualised care plans, direct payments etc. and the original idea was exactly as you’re wanting. Give the care budget to someone and they create their own plan, and have inbuilt flexibility. The original philosophy got so eroded away and just became a cost saving exercise. And now here we are. You are saving the state a lot of money and carers should be supported. there was a lot of good talk of empowering people. Allowing them to create their own solutions and for them to thrive not just survive. I’m really sad to here how inflexible the system is now and it feels like a backward step ☹️

Mum to a complex kid with medical needs
Hes 17 now and we get kids continuing health care and have already qualified for adult. We get 35 hours per week direct payment. Finding a DP worker is almost impossible.
Finding time to yourselves is even more impossible.
We have a 19 yo at university and a 15yo.
Can't remember the last time we had a holiday.
Our kids miss out in so much. Hes so complex we need to keep him home. He currently gets and has for the past 4 years Specialist Learning Support in school, so someone trained to look after his medical needs. They have just changed the criteria so now he doesn't meet thier criteria. School can't look after his medical needs so now we are stuck!!!
If we put him into Specialist care and dont have him at home..... he will be looked after..... if we don't ge will get home all day with just me!
Which one is the cheapest?????

I completely agree with you.

Apart from the moral issue that carers need support it makes no financial sense to drive people to a point where they are exhausted and ill because then they may well need health services for themselves and have to give up caring necessitating full time care for the person they support.

I have a friend who is in his eighties and he and his wife have cared for their now 58 year old daughter for her entire life.

They have to beg for a tiny amount of respite and also pay for it.

Yes the daughter gets PIP but that does not cover all they spend on her plus despite her condition being congenital and so severe that anybody meeting her for a minute knows she is severely learning disabled PIP still insists on putting the family through a renewal assessment every few years.

They didn’t know carer’s allowance existed for many years and it can’t be back dated so they have under claimed thousands of pounds.

It is all so ridiculous and unfair.

You are absolutely right. But the decision makers are working to policy and its policy that needs to change. Now is a good time to get your voice heard when it comes to care issues. In your shoes I'd start with my MP. You could also Google the We Care campaign where groups of carers are trying to lobby for change in just this sort of thing.

I see both sides if I'm honest.

I totally agree you deserve a proper break, and if they allowed you to accrue hours it would help with that. I wish they could make that work for you, and maybe they can and should come up with a system that works.

But, respite care only works if people are willing to take on the work. People that have bills to pay, and agencies who employ people who want a regular income and predictable hours.

A weekly commitment is much easier for the council/agency to service than nothing for a couple of months then a weekend straight (which would take more than one person). I could see them managing this for one occasionally but juggling many people hours would become a logistical nightmare.

It would mean a more spiky income for the carers, many of which couldn't afford this and would have to find alternative work. Then it's an even bigger issue.

It would perhaps make more sense to have less frequent weekly hours (every other week) and set respite weekends, so it's a set plan, rather than accruing and 'spending' to suit.

We’ve got friends who will be in your position in a few years

They are talking about getting him into one of those supported living facilities for then. They don’t feel able to cope otherwise.

The council don’t involve themselves in acquiring carers. I use an agency as allowed by the council but also actively look and indeed the agency employs someone I know for periods like this and his normal Pa is also happy to increase hours to accommodate so we make it work. I am the one along with the manager from the agency who does all the organisation and leg work not the council who do zero recruiting.

Your point that no one wants to talk about the future seems salient. What accommodation/support plan do you envisage would suit him best after your death? Is there any way to move towards this transition while you are still in your sixties or seventies?

I have no idea.

a friend has put down a deposit for her son and is buying a 2 bedroom house for a live in PA . housing association cover the mortgage and deposit is held in trust that is ring fenced.The issue is that your kid is wholly dependant on the character of the PA and that could be open to abuse surely.

Others seem to be in supported living but the issue is that benefits don’t cover costs well. So they are in utter penury.Also it corners on the nature of the place and if it will provide the right sort of fit for your kid .

Ideally we would do the flat option but not at this stage as he is nowhere close to being ready for that. We are working on making him as robust as possible and Indep as possible eg what simple recipes could he make from pre chopped frozen veg if the PA did not turn up. Joe to remember to go to the dentist and ask for an annual check up etc safety with microwaves etc What is healthy eating m, how TK use a medicine box TK remember to take tablets etc

The LA sound to be completely unreasonable. I would complain to your local councillor in the first instance and MP if that doesn’t work. Are you in a position to fund your own respite to get a break in the short term? I know there’s an argument about whether you should be paying for it but sometimes needs must. It’s certainly what we have to do otherwise we’d be on our knees.

OP is correct, the problem is that she is not allowed to accrue the Direct Payments to an amount that will allow her to pay for the respite care that she would like and needs.

Should she accrue more than 'x' amount of payments then the CC/LA do claw back the accrued amounts as they are considered 'unspent'.

This may not happen in every area but it certainly is how it happens in mine.

Forgot to add that I think that it may be possible to make a one-off request to accrue direct payments for a specific purchase. Try and look into that OP.

Is it possible to request a Personal Budget instead so that way you’d have more flexibility in how the money is used?