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.

Stepping out from behind my lurking rock to say that I hope you finally get something out of the meeting tomorrow.

Get on the phone and tell them you will not be caring for your son any longer if they don’t reinstate your previous package

Believe me you’ll have the SW running to her manager. They will then discuss how much it would cost them to care for your son without your input and reinstate the care
I totally agree with this!
I'm a slightly different sector but a call from a parent to SS saying pick my child up. I can not cope anymore sends the team into panic. Just to add it's families that are known to SS. SW know whose at breaking point and in all honesty OP it sounds like you are.
I hope things get sorted for you and your son.

Well, the meeting went pretty well.
The new care coordinator was very nice and much better informed than her predecessor.

She condemned as bad practice the fact that neither I, my son's day service or respite providers had received any care plans since 2015 (when bad CC took up her post).

The respite hours are 14 days to meet son's needs and 10 to meet mine as carer.
These have not been reduced and a carer's assessment is going to be made with a view to having the 10 nights increased to allow me to continue to provide care.
She was very supportive and I did feel as though she was on our side rather than just fighting to protect a budget.

The question of transport payment still rumbles on, I have requested a Care Act Advocate as advised upthread by a wonderful mnetter
I have also followed up the link, given by another of you, to Luke Clements and the Disability Law Service so, when my brain has had time to catch up, I'll be giving them a ring to see if they can help us through the maze of legislation that is the Care Act 2014.

It does seem, at first glance, that is is unlawful for the local authority to charge for a service that is identified as an eligible need and on his care plan.
Transport to access day services are on his care plan, they have a duty to provide it.
It seems they are trying to circumvent the rules and my son is the only one in our area who hasn't just paid up, so I'll probably be hit with all the might of their legal department as it won't be a fight they want to lose.
Or they may decide to turn a blind eye rather than lose, we shall see.
Anyway, all that's for another day, let the problems of the day...and all that.
Thanks to you all for your support xx

Glad it went well!

I do believe that the LA is within their rights to charge even if there are eligible needs. They will means test your son and he will be expected to contribute if they deem he has the means. He might not have to pay a lot but they will get every penny out of him that they are able to.

They have a duty to meet the need but not a duty to pay for it if they means test that a contribution is needed.

However MOST local authorities do not means test carers and they cannot ask you to pay to meet YOUR eligible needs (identified in carers assessment) if you are in one of the council that don't means test. However if they are giving you ten days respite in his plan then that comes under his means test and not yours.

Do you have a 30year old child who is doubly incontinent, highly anxious and requires 24 hour quite frankly the money the op is saving council by caring for her son at home should entitle her to 24 nights respite and the transport to and from day centre. I’m struggling to see why people are even bringing it up

@Maldives2006 some people have brought it up because it may well be the truth. It may be lawful for the local authority to charge for transport. However, that doesn’t make it morally right and it doesn’t make it fair. It doesn’t make it any less hard for the carers who do it all out of love and care and therefore save the government a shed load of money. I am a person who is cared for as a result of my disability, my partner cares for me. I know the sacrifice and lack of recognition. Carers are unsung heroes.

I wouldn’t assume it is linked, it might well be that the respite has just been cut for everyone.

I would request a carers assessment/review (you are entitled to this) and do stress the point that you are experiencing carer strain and may not be able to continue caring without more respite (ie it would cost them a lot more to find a full time placement). They should also not make changes to the support plan without a review.

Glad you are still going to get the same number of nights respite - sorry I should have read the whole thread!

OP I'm glad to hear the meeting went pretty well and you feel this new person is listening to you. It's been a while since I visited this thread as I know the burnout feeling too well.
I'm also glad your son is recovering well from his op! That's a bit of good news!
Keeping my fingers crossed for you, I wish I could help you more,but all I can offer is tea and sympathy x

OP, I'm really sorry if this is out of line - I really don't intend it to be.

You sound absolutely exhausted. You're at an age where many people are thinking about their retirement in the coming years and you are doing an incredibly hard job.

Given that your son will go into supported living at some point, now that he's 30 would you not consider it soon? He will be distressed if he has separation anxiety, but realistically that isn't going to go. If you run yourself into the ground you will shorten your own life and he'll lose out then (as well as you, of course!) Would you not consider biting the bullet and letting him go to supported living accommodation and seeing him as often as you can so that he adjusts and so that you have a better quality of life in physical terms?

You have had 30 years of very, very hard work - emotionally, financially and physically. You really deserve to think of yourself now.

The new care coordinator sounds much better, thank goodness. Hope you get the extra nights x You are a wonderful Mum, and I hope you get the transport taken care of too.

I'M SO EXCITED, I HAVE TO SHOUT!!!

Social Worker has just rang.
She talked through my son's assessment with her line manager, explained all that had gone on with previous CC... and son's respite has been increased to 28 days immediately!

She told her how much stress the department had caused me and the inactive, hostile support I have received.
Apparently the line manager is going to ring me later in the week to apologise for everything that's happened.
It just feels amazing to have some support, to feel someone is on our side.
I'm crying again but it's with relief.
Carers assessment in 2 weeks.
Transport issue is going to be passed to advocacy unit, I'm happy about that, I only want what's fair for my son.
Again, thanks to all you internet strangers for your uplifting support X

@unexpectedtwist My son has had a financial assessment, he is already paying the maximum the rules allow for non-residential charges.

That's brilliant, so happy for you. Bloody well done for persevering and standing your ground.

Such a great outcome!

Fantastic news! Well done, OP, for sticking to your guns.

Fantastic news!

Are you able to link some of those respite days together and go on holiday, however short?

Fab news! I'm so glad for you! well done for persevering xx

Fabulous news

That's terrific news. As someone with a recently diagnosed adult daughter, just going through PIP process now, I have a tiny inkling of what you have gone through, but only a tiny glimpse. How you keep going I do not know. Have these

Fantastic - but isn't it scandalous that you've had to fight and fight and fight to get where you are today?

That's brilliant news - how very nice to have the powers that be on your side for once

Congratulations your dedication to your son and his protection is wonderful. It is sad that some people just do not understand the sacrifices parents who care for disabled adult children make.

Hurray!!

I am so pleased for you, its just such a shame you had to fight for this in the first place.