Respite taken away.

[Respite24]

I've put this in AIBU for traffic and in case I have been unreasonable, also name changed, I hope someone is able to point me in the right direction.
My son is 30 years old has severe learning difficulties, autism and a number of medical and mobility problems.
He has had highest rate DLA and mobility component since he was three and now gets highest rate PIP and mobility component.
I have always used his mobility for a motability car.
He goes to a day centre four days a week, collected and brought home in minibus.
He used to pay for travel until about four years ago (but could be longer ago than that) when SS began to pay, it was included in the charges from day centre.
Last year our local Social Service Adult Learning team decided every service user who was in receipt of mobility component should pay cost of travel, about £17 per week.
I refused to pay it on my son's behalf as his mobility is used for his car. An independant advocate was called in and he agreed that my son had already been assessed by LA finance as paying the maximum for his care charges.
I suggested SS use son's car, it is for his use but obviously they would have to arrange driver and insurance (I knew this wasn't reasonable, knew they wouldn't/couldn't do it) this took place around February 2017.
I have heard nothing since.
But, he had 24 nights per year respite.
The manager of the autism respite unit has just rung me to say that his contract has been changed to 14 nights per year.
No assessment meeting, no communication of any kind.

What can I do? I am worried that the two things are linked together, my inital refusal to pay transport costs and the Advocate's agreement with that, and the withdrawal of the number of nights respite my son has.
I never used respite until he was 26/27 years old, it has always been 24 nights.
What can I do?
Sorry for the ramble.

Or can someone else be insured for the car to transport him there?

PS it sounds as if you're doing an exhausting job caring for your lad.

You're saving the country 1000s by looking after!!

Thank you @bluestarthread last holiday was 1997.

So is it that he can’t use a normal car, and you have to have a car to take him to all his appointments and for him to go out day to day? But you also can’t take him to his day care, because you have to be elsewhere at that time? Hence where the issues have arisen?

When dd used a day centre, i took her and picked her up, like you we have a motorbility car for her.
It turned out to be so expensive for her to use their transport, that her days would be cut.
I wonder if that is what has happened. Could you not take him and pick him up?
My dc is also an adult, I wasn't the only parent having to do this.

Because the centre is supposed to give them a break from one another and give him some activity of his own, social contact. This is an anomaly, they should sort it out. Likewise respite is to enable you to keep caring and provide extra contact for him. Unlikely to be linked, funding issues, everything cut to the bone, they cut the daycare here and carers had to campaign and lobby the council. Advocate, councillor, mp. Are the centre on your side? Shocking when there is plenty money for bloody road humps, wars and tax cuts for millionaires.

Respite, having had a friend with an adult disabled child and I also have a severely disabled adult in my family. I think I get where you are coming from.
The man in question has been assessed and is entitled to a high level of support. When he is not there his mum is his full time carer. How many mums are still ferrying their 30 year olds back and forth to work every day? The state should help her with this so she can work or have some life of her own. Most mums with neurotypical children at this age would have this freedom.

Our system is supposed to help disabled people be more independent and supported - and the carers need the support.
Place yourself in the OP’s situation - two weeks of respite care is appalling. Two weeks out of 52!

I think the transport issue is a red herring here; the respite is allocated to you as a cater to meet your needs, not your son's.

It sounds like they've conducted a review without you (have other families had their packages cut too?), probably due to budget constraints and maybe a change in how the criteria are being applied.

My advice (as an ex LD SW) is to kick up a fuss. Ask questions. Bug then about it. Ring them every day. And if you reach a dead end contact your mp or consider approaching the press.

You are saving your LA in enormous amount of money by caring for your adult son. It wouldn't be unreasonable for a person in your situation without sufficient respite to start saying they could no longer do this role without support. They need you to look after him so it's in their interests long term to keep you well enough to perform your caring role.

I'm so angry on your behalf. Your situation (and those of many many other families) is one reason why I left social work.

Where I am, you are ineligible for local authority transport if you have a motability car. I expect there’d be some exceptions, although I’ve not yet come across this.

Respite being cut should have been discussed with you. If the provider has had their contract changed, you should be given the opportunity to choose somewhere else to all or part of the remaining days.

Sorry for not keeping up with the responses, I'm trying to make dinner and will have to slope off in a minute.
Just need to say, I'm trying to care for him at home, he wants to be here, with support I can do it.
In the not-to-long-distance future, he will have to go into supported living,I will die before him, I hope.
Overnight respite is part of the transition, he has separation anxiety, that's why I had never previously accessed respite.
I have just ended being a multiple carer for my mother and both PIL.
I am NOT going to start the school run years again.

Op lots of people are saying they don’t understand, have you tried posting in the SN section? I think there’s lots of very kind and knowledgeable people there who have a much better grip of the system

I would start pushing for him to move Into nearby supported living. You can still. See him.every day and spend time with him and go to appts but with a good transition he could live with support staff who use the car for him.
Given his age you must be at least 48 or more so it s a good time to start planning a transition...d's has complex needs and now in supported living 24 7 support . I would not manage with 24 or 14 respite nights a year for sure.

It is fairer to him to start a transition planning to supported living beforeyou die so it is not a shock...if he has managed overnight respite then with good planning he can live nearby in supported living. Transition can mean spending one hour a day there first week then two then buid to overnight

I think it is very unlikely that the 2 issues are linked. Most likely 2 separate budgets both facing cuts with already limited finance.

I am so sorry that you are having this worry on top of everything else and a new thing to have to spend your energy on to fight.

From your description it sound that if he was in a residential setting he would be costing thousands. Have you looked into direct payments? He sounds as if he could easily qualify for his own budget. Then you could either use the money to pay someone to take him to and from the centre - or to spend time with him when he is at home. Do you have a social worker you can ask about the respite cuts?

I don't think this is happening because of the transport issue. UK wide there is a huge lack of respite carers for ppl of all ages . They may have lost some of their carers this year due to illness retirement etc etc. Have you explored every charity available to you OP? Good luck

MP first of all but look into supported living too. It’s utterly disgusting how disabled people are currently treated in this country, I won’t start ranting but it seems some people who are very undeserving get everything to help, yet those who really need it do not. I really hope you get the support he needs

I don't know if the two issues are linked - I can see that if your Local Authority are saying that the respite 'fund' has to include paying for his transport, then this could reduce the number of respite nights that can be purchased. As a first step to fighting this therefore, you need to get an answer to the question of why the number of nights respite has been cut. Until they answer "because of transport" or otherwise, you don't know what you are fighting.

However, I too have to ask why you cannot use the motability car to take him to respite, when you drive him to other places. It's not a school run, despite you thinking that. It's enabling him and you to maximise the respite 'fund' on time spent at the centre.

All councils are going through funding cuts, and you may have to decide what is more important to you - having somebody else provide the transport, or having another couple of nights' respite but you provide the transport. If he/you were to take direct payments, you'd have to make that decision yourself.

I am NOT going to start the school run years again.

You have opted to use his mobility payment to fund a Motability car, which is fair enough. His attendance at the day centre requires funding for the transport, or he can be taken there in his car. You don't want to drive him there and back, so you need to pay the £17 aweek for him to be transported, you can't just say we've already spent his mobility component so the LA needs to pay it.
The respite care is something totally different and I would certainly challenge the decision to reduce it.

Again, this government is cutting funding which is used to support our most vulnerable citizens. It’s a disgrace. No advice op, but you have my support when it comes to Election Day. I will never ever vote for this Tory government which continues to destroy our social services and shit on the disabled.

It may be cuts, or there are more users than spaces available and they have has to cut the number of nights to accommodate everyone.

I am NOT going to start the school run years again but then why use his mobility to buy a car he can’t drive himself?
From what you say, I imagine public transport is not possible, what about taxis? Would he be able to take one alone?

It's probably pertinent to say that service users not in receipt of mobility component are not required to pay transport costs, those costs are part of the negotiated package between SS and care provider.
SS decided to change goalposts and claw back money from service users in receipt of mobility, motability car uses full allowance and is a 3 year contract.
In any case, my question was about what to do about the massive reduction in respite, not to be advise to drive him to the centre myself.
Hope all you clever shites never encounter my problems.
Walk a day in my shoes...
Thank you to all of you who've offered support, advice and sympathy, much appreciated. X (an un-mumsnetty kiss for you all)
It's another battle, after 30 years of battles, I truly could do without it but I suppose I'll have to hoick my pants up and get fighting a-fucking-twatting-bastard-gain.
I'm 58 and haven't been able to work for 12 years.

"You have spent the mobility component of the money on a form of transport that doesn't meet the need of getting your son where he needs to go"

Presumably he is allowed to have a life outside of going to day centre.

Wow. I was genuinely asking a question because I didn't understand.

There is no need to be so rude.

Is this how you always treat people?

all you clever shites

Has anybody on this thread really deserved that outburst? You must be very stressed OP. I really hope you get the outcome you want regarding the respite.