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.

What @Melliegrantfirstlady said. Say that without that respite you cannot meet your sons needs.

I think it's incredibly unlikely that the transport thing is related the the respite.

I am a bit confused that if your son is paying the maximum for his care what difference does it make that they have reduced the respite? Can't you just arrange privately?

By the way you should not, under any circumstances, offer to pay for the transport. Even if it is related it wont be "officially" related.

Oh, gosh no! I didn't explain that very well, sorry.
The cost of respite is £££££ he pays the maximum the Local authority is allowed to take.

When was the last time you had a Carer's Assessment focussed on YOUR needs, love? Because you are entitled to one.

You need to separate the two issues. Regarding the respite, it is extremely shortsighted and unreasonable for the Local Authority not to fund respite care for your son. It is essential for both you and your son's well being. I would fight this vigorously, involving your MP and GP if necessary.

Regarding the fact that you have a motability car - you are in receipt of tax payers money for this - its purpose is to provide transport for your son - so it's not unreasonable that the LA charge for his journey to the day centre if you're not willing to use the car. Is there any reason why you can't drive him there and back?

I'm not sure why you expect SS to pay you mobility payments, then also pay to get him to the day centre? You're already receiving payment for that, you're deciding to spend it in a way which requires you to drive him. If you don't want to drive him, you need to use the payment differently.

I can't imagine how difficult your life is, but i think thats skewing your judgement here.

@Respite24

Ahh sorry it wasn't you it was me who misunderstood.

The thing is, I couldn't threaten to hand him over, the care provision is dreadful.
I couldn't do that to him.
The place he goes to is a specialist autism centre, it has day care, a training college, a working farm and a residential farmhouse.
My target was (shared with his respite manager) to get him comfortable, known and happy there.
If I just threaten to hand in the towel, they could call my bluff and put him into the even more ££££ in-house care home that he tried the first time he had overnight respite and it was grim as grim could be.
It's a never-ending worry.

Ok.
I take on board the transport argument is potentially unreasonable. If they ever get back to me on that, I will potentially agree to pay it.
So...Respite?

I think you were totally unreasonable not to pay the £17 per week, however you are N B U regarding the respite

this

So sorry this has happened. Your whole story makes me fucking fuming. It's clear that this is all to do with funding cuts and nothing to do with the needs of your son. Who the fuck vote for the tories, it's people like your son who miss out. I teach I. A special school and the cut are affecting the people who are truly on need, ignore all those trying to suggest you deal with this. I doubt very much they have had any experience with this. I would get MP, doctor, social services involved as others have said. Sorry to say but those who shout loudest....

*BitOfFun Come to think of it, it's about 14 years since I last had a carer's assessment.
I hate having contact with them. It's generally a pointless experience.
Believe it or not, I get so sick of talking about my son and our life.
But it's the hoops you have to jump through, isn't it?

Op I just wanted to give you a and some and heck, maybe some

I cannot imagine 30 years of what you must have lived with. I am quite sure it is a never-ending battle and you are exhausted. I can see you are doing the best for your son. No solutions but just wanted to give you some support.

I could hang myself even further by telling you all that he has issues about traffic and would much prefer me to drive him to the day centre.

Then I could tell you again that he has separation anxiety and it is better for him to be more independent of me.

Then I could tell you that it breaks my heart that he doesn't have the full, pain-free life his brother has.

Then I could tell you that all I did was have a son, I didn't sign up for a lifetime of grey exhaustion.

Then I could tell you that I'm worried sick that he may die before me and even more worried that he may not and all that, that means.

Has your ds used all his respite day/night allocation since he’s been there, as our ds has moved to adult service respite and he was allocated 28 nights but were told if he didn’t use all the allocation every year it would be reviewed as not needing that amount of nights and reduced accordingly.

With regards to the mobility payment could you not take him in the car which would solve that problem, assuming it’s not miles away from where you live.

Fuck! Crying now and I actually had make-up and mascara on today. (hospital visit is a day out)
That'll teach me.
Anyway, Thanks all, even the 'drive him there yourself' crew.
It helped to vent.

Yanbu, it's a fucking disgrace, I would complain to my MP, and let the SW Manager know that is what you will be doing. You can lodge a complaint with your LA. Good luck

The transport argument wasn't unreasonable. They can use his car but they cannot insist you drive it.

vent away op

I understand that you're trying to protect his income but in the long run this may not benefit him. If he has over a certain amount he's going to need to pay for a lot more, this would be the case if he was in supported living too. Spend his money, its going to be used to pay for his necessary care needs if not and he's the only one that will lose out.

Transport is an argument you are not going to win. This is the route they are going down and there's no way to change that. I don't agree with it but I can see why it has come to this. Realistically how much would it cost you to take him back and forth each day? Is £17 a week worth it to not have to change his routine? A lot of individual's coming through transition are not being given the choice of transport, if they have a motability car, they are being expected to use it.

Focus on respite, if needs haven't changed then there is no reason to reduce the days. Have you been using the full amount each year? When was the last time you had a carers assessment and what were the results of that? Unfortunately there have been cut backs everywhere but those cut backs should not mean you lose 10 days a year. Ultimately the lack of respite is likely to make you consider supportive living sooner than planned. Use that in your argument, providing extra respite is a lot cheaper than supported living will be.

Apart from the first year, we've always used his allocation eggsandwich he actually likes to go to this respite centre, it's 1:1 care.
He loves to go.
The first time he accessed respite was an in-house respite home, run by LA.
It was grim. They didn't give a shite about him and he knew it.

Forgot to add my ds gets income related ESA, if your ds doesn’t get that, I would seriously apply for it as it works out quite a lot every month which will help for what your paying in transport costs.

I wonder how far the day centre is from home? Have any of you considered that day centres may be some distance & that we don't know the length of day her ds spends there? In addition there would be time taken up by her getting her severely disabled ds into the vehicle & the stress of being by herself on the journey - which I don't imagine is straightforward. Going backward & forward like this shortens her day & at 58 the hard 24 hour graft of this kind of care probably means she needs some rest to face the evening & early morning - I imagine that the care is not only emotionally draining (he had ld & asd) but physically so as well) she needs the car to drive him to his other medical/hospital/therapy appointments & no doubt to do simple things like shopping - which with her ds being this disabled would be incredibly difficult & complex. As too the "easy" option of finding her ds supported living - jesus don't make me laugh! First while she can she wants him to be happy living with her, secondly trying to find supported living & getting the funding is a nightmare & as her ds has asd changes are going to be traumatic for him. Also she would want somewhere near to her so she can visit & somewhere that social service will pay for...& that is a major hurdle these days as evidenced by the issues she is facing now.

I think part of the confusion for transport can be that he must pay whilst others don't need to. Though that seems fair in black and white in reality it is less so. The op would need the car for hospital/other appointments for her son, not everyone can cope with hospital transport, and the lease for the car means the pip mobility money is already been spent so there isn't the £17 left to pay for transport as the care element would pay for his care. The centre could also be many hours drive away it not necessarily as simple as being close by.

When I approached MIND many years ago (when there was one around here) the cost for me to have support there was £10 an hour more than someone who didn't get DLA because they saw it as care - if I didn't have DLA it would have been £10 an hour less. There was no recognition that my DLA care money was going on physical needs and as as result I didn't have the money to give to them so they simply refused the support.

op You need to contact his social worker/CC to ask about the decision to reduce his respite care, though it seems the two issues are connected they won't necessarily be. You should also be able to access an advocate to help you with this.

OP, I can't send you enough flowers, love this is so hard for you and your son.

As others have suggested, you could start making 'noises' about not being able to cope. I promise you, they will NOT want to take him out of your care. They can't afford it!

Kick up a stink. Find out what's gone on with that bloody respite package. I know it's just another fight in a long line of fights for you but you can do this.

In my experience in LD SW, it was the families that shouted the loudest that won their appeals and got (some) of the support they needed. Of course it's still never enough when you're under the kind of strain that you are, but shout shout shout. The squeaky wheels get the grease.