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.

my son was transitioning for Special Needs School and Children Services to Adult Services

Yes, this can often be the point where a social worker is allocated - only for you to be told, when desperate for help, that "they've not appointed anyone yet", that "the teams are changing" or just that "they're away"

I'd suggest it's also the reason to distrust assurances that help will be provided if you'll just agree to such-and-such; all too often, once that box is ticked, it''s back to the responses above

As I said, what you need IME is to keep your eye on the long term view. It's not easy getting there, but in the end it can be far more satisfying than platitudes from your MP and whatever that temp whose name you'll never remember said

Thank you very much indeed, Cyberworrier

@Respite24

Fuck what everybody is saying about the transport costs. The way things are now the only way to navigate the system is to fight for everything you can for your son. You will not win every fight and you may be unreasonable sometimes but the system is unreasonable most of the time.

You did the right thing. Fuck anybody that says otherwise.

Puzzled I thought I had started the ball rolling with the respite care.

I know he needs to be in supported living, I know I must sort it before it's too late.
I had hoped that the system wasn't so messed up that it would screw him over first chance it got.
I was wrong.
I will battle on, it's just that today, when I posted, I had just heard second-hand news and it cut me to the core that I would have to go into battle again.

willstarttomorrow I thought my LA was a pretty decent one too but they are all under the increasing cosh of austerity do not even mention the brexit effect still it stings, it really stings.
I'll shout. I'll shout loud.
I just feel sad that I must, because I'm worn out, I really am.

FruitCider
It isn't fucking unavailableI am unavailable.
I am not employed by SS, they can drive my son around in it all day long.

Bold fail, so I'll say it again.

FruitCider
It isn't fucking unavailable, I am unavailable.
I am not employed by SS, they can drive him around in it all day long.

Thank you @Tessliketrees I will try to fight his ground.

I really am so sorry to read this - you sound desperate and exhausted.
You are doing an AMAZING job. This isn't what you signed up for, but it's the hand you've been dealt and I for one don't think I'd cope as well as you have done for 30 years. I'm sorry I don't have any advice, but just wanted to say that I'm thinking of you and what you are going through xx

Oh OP, I've just read the whole thread and I have nothing useful to offer but I just wanted to say how sorry I am that you're going through this. The way we treat disabled people and their carers sickens me. You are doing the hardest thing a person can ever do and I'm so sorry it's being made harder for you.

My BIL has severe learning difficulties and my FIL has spent his whole life fighting for opportunities for him. We are lucky enough to live in an area with very good (charity and church-driven) resources for those with SLD but even so, something new disappears every year and my BIL's quality of life gets a little bit worse. That said, I'd echo a previous poster - he's in a supported living facility and it is absolutely fantastic for him. I hope you find something similar for your son when the time comes.

You're doing amazingly. Your son is so lucky to have you. I'm sorry you're having to fight so hard for support.

So just to round it up before I start bedtime routine...
Tomorrow, ring Social Worker/Care Coordinator and ask:

What is going on with respite allocation?
Why has it been reduced since needs haven't changed?
What were the reasons for reducing the respite provision?
Why was it reduced without meeting?
Why was I not informed of the reduction in care provision?
When can I have a meeting as I want the previous respite provision to continue?

Is that good enough as an opening gambit, d'ya think?

@Respite24 I’m so sorry you’re going through this. You must be on your knees with exhaustion and the last thing you need is to have to fight for respite for your son or account for every bloody mile the Motability car does.

I’ve got nothing helpful to say, I just want to give you a big hug. I hope you manage to get it sorted. 💐

And thanks to all who've given kindness, understanding and support.
Solidarity to those who share the struggle

FruitCider
I've said once, I'll say again...
Get back to me when you've spent 30 years caring for your son, until then...
FUCK OFF

Fruitcider stop being a dick

respite you were told by respite centre, social care had reassessed. Add asking for a copy? As far as I’m aware they cannot change provision without reassessing

Honestly Fruitcider is it worth it? OP is exhausted, stressed and upset, and never asked for anyone’s comments on the car, and yet for some reason that’s all you can focus on. Nothing constructive or helpful, just pick pick pick and then I’m sure you’ll be offended and surprised when OP justifiably tells you to fuck off. Why not try and do a nice thing, stop reading the thread and leave her alone. I include everyone else on here who is picking about the bloody car. Just. Fucking. Leave. It.

OP I am in the fortunate position of knowing nothing about all of this so have no advice to offer, but you sound worn out and I wanted to send a very unmumsnetty hug your way. You’re doing a grand job. And you’re a great mum.

Perhaps the car suits her son's needs best for all the other hours he needs transporting apart from getting to day centre?
Perhaps he can't take long walks to go to other places? Perhaps he can't cope with public transport? Perhaps he is nothing like your family member?

supported living ... I had hoped that the system wasn't so messed up that it would screw him over first chance it got

Ignore me if I've misunderstood, but do you mean the grim "in house respite centre" run by the LA which DS went to? I can only speak as I find, but round here anything actually run by the council is a complete waste of time, with demotivated staff who know nobody's effectively accountable for anything. We have a local saying that anything they attempt will take five times as long, cost ten times as much and won't work - and it's not far wrong

Fortunately they now commission private providers who use proper management to supply a very different experience in supported living, so I wonder if they do similar in your area?

Hats off to you OP, you are doing an amazing job taking care of your son.

Ignore all the idiots telling you to drive him, that's all totally irrelevant to the big issue here which is getting his much needed respite care reinstated.

Has a re-assessment actually happened? Very odd that you don't know about it and haven't been informed of the outcome. I know it's the last thing you need but you need to do some digging and keep pushing for facts and evidence that have been used to make this decision so you can build a case to challenge it.

FruitCider Pipe down will you?

OP has explained why she needs the car. How is she mesnt to transport her son to all his other appointments, or take him out or even pick up hi prescriptions or food shopping? He doesnt only go to the day centre.

I suspect that transport and respite are quite different issues. I have huge sympathy for you on the respite issue, sitting on the fence re transport

FruitCider
I've said once, I'll say again...
Get back to me when you've spent 30 years caring for your son, until then...
FUCK OFF

Well aren't you a lush 🤔

There's means and ways of communicating with others, and this is not it.

Being as you are refusing to answer that question I'll move on to the other part of your post.

No, the cuts in respite are nothing to do with your refusal to pay reasonable transport costs to get your son to a day centre.

My uncle had 24 hour care in his home (apart from the hours he was at the day centre or agreed hours we would look after his care needs) after my nan (his main carer) died until the beginning of this year. They cut his daily hours to 4 and removed his sleep in support.

2 months ago he burned his stomach on scalding hot water, this was not discovered until 3 days later as my uncle can dress himself (though picking out appropriate clothing is another story!). I went to visit him and he complained of pain. He said he had burned himself and his vest (yep I tried to get him out of his vests in the heatwave and massively failed) was stuck to it. He had second degree burns!

We are still fighting to get his care package reinstated....

Fruitcider you're making a fool of yourself, stop.

Maybe also ask exactly who made the decision (it can be helpful if you are able to find which individuals) and what evidence the decision based was on?

In terms of the car, presumably the OPs DS needs to get to lots of medical appointments, visit family, go on holiday, go to activities. All things he may not be able to do without a car as his disability may mean he cannot get taxis or public transport.

I’m assuming it’s not just a case of OPs DS hopping into the car and hopping out the other side. It probably involves a huge amount of time and effort and OP driving him there could cause huge anxiety for her DS at the other end, not wanting OP to leave him etc.

My grandfather goes to a day centre (arranged by social services). He gets picked up and collected by a bus.
He also has a mobility car that he can’t drive. His daughter and granddaughter use the car to take him to medical appointments, pick prescriptions up for him, take him food shopping, on days out and visit family.
Do you think because he has a motability car that the relatives should also go and pick him up and take him back and forwards to the day centre? (Impossible as both work and are ‘unavailable’).