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.

I haven’t read all the responses so apologies if I’m repeating, but the LA where we live say “that it is the parents responsibility to transport to respite if the service user receives the mobility component of DLA or PIP” we’ve had to transport DC since he was 5

The only transport they provided “free” is to school & only until they reach the age of 16. It actually works out cheaper for me to take & collect from college than have to pay the £700 a term “contribution”

You may find your LA has the same expectations

Parents can't be made responsible for transporting adults Gin0clock and any link in transporting to mobility dla or PIP is unlawful.

Spikeyball, I really need to look into this don’t I?

I under where you are coming from OP but in honesty £17 per week is very reasonable and I would be happy to pay that for him to get back and forth to a facility that is beneficial to both him and you.

The cut in respite is another matter. I know i t has happened to many families, some of which have been driven to desperation.

I think the difficulty is the £17 a week isn't payable by people who don't have high rate mobility PIP. That's where the difficulty lies. He doesn't have that money to pay for the service so something else must be lost whereas if he didn't have it at all yet had the needs (he'd need to have the needs for it round here to get transport which isn't the same as the dwp agreeing) he wouldn't need to pay. He needs the car and doesn't have the option for the car and to keep back £17 a week.

Services sometimes make assumptions about availability of funds, especially DLA/PIP which can be viewed as a bottomless amount of money by some (not all).

Spikeyball The mobility component of PIP/DLA is excluded when assessing a person’s finances in terms of client contribution to care. Transport is assessed separately. I would assess a person and then we might decide they would go to a day service, followed by a separate travel assessment. If they meet the qualifiying criteria, then it would all be included in their care package. The problem arises when someone is eligible for day services or respite but not eligible for local authority transport. I hope this makes sense and I am not well at the moment.

I under where you are coming from OP but in honesty £17 per week is very reasonable and I would be happy to pay that for him to get back and forth to a facility that is beneficial to both him and you. But as I understand it, the DS is paying the maximum to attend the centre which should include transport. SS are now wanting payment ontop of what the DS is already paying. That’s what people are saying isn’t reasonable.

SunnySkiesSleepsintheMorning yes I can see it would be different if a person was capable of independent travel to the day centre.

Whether funding is removed rightly or not, I think it’s awful that a worker would do this without speaking to the OP first. It’s not ok.

To the carers out there, you are not invisible to this social worker. You are valued.

Thank you

Op, how did you get on today? Been thinking about you this morning

OP I am moved to tears reading your thread. All I want to do is make you a cuppa and give you a hug!

My younger brother has SN and is likely to need life long care. My parents are getting older and I can see they're worried for what's to come - luckily most of his challenges are emotional/intellectual, physically he isn't too bad although as his condition is a dengenerative muscular one that could very likely change.

My heart goes out to you. You carers deserve so much more than you get - I hope you get to the bottom of your respite care issue as you absolutely deserve it.

Lots of things that have been said have been very helpful, so I thank you all from the bottom of my heart.
Goady, spiteful, ignorant posts notwithstanding.

Despite being in a turmoil last night, I slept like a log, DS slept all night too. :)
But as soon as I woke this morning, the dread and gloom of entering the 'Arena' again descended on me.
My days are too busy to dwell on things though, I have no choice but to be proactive, so - up at 6am, son sorted, multiple coffees, trawling through the Care Act 2014, again - ring Learning Disabilities Team at 9am.
Son's SW due in office but not there yet, person answering phone needed to know what my call was referencing, I explained how I had found out about my son's reduced respite and that I hadn't been informed, that his needs hadn't changed so I needed to wind things back as I intended challenging the assessment.
She was aghast that I hadn't been informed, promised she would pass the details on and asked when was the best time to get back to me.
As son had another hospital appointment this afternoon, I said before 12 and after 3.30.
However, mindful of something previous posters had said about sqeaking wheels and pestering, I rang again at 11.15.
SW had just left the office, the person I spoke to was same one I spoke to at 9am.

She assured me she'd passed the message on and that SW had said she needed to speak to her line manager before she contacted me, once again she assured me it would be dealt with.

It's now 4pm, Friday...I'll eat my son's pickled onion crisps if I hear from her now.
So...just a waiting game over the weekend. I'm going to try to put it out of my mind as thinking of it makes me feel both physically ill and foaming with anger.

On the way back from hospital son was singing Mistletoe and Wine (he'd spotted an old bit of tinsel clinging to a staple in the waiting room ceiling, misses nowt, that lad!) and said 'I'll be able to go to the Pantomime with Andy again, won't I Mum? that's exciting isn't it?'.

My heart sank for him yes GFs, I will take him to a pantomime but he likes to go with Andy without his full allocation of respite he won't be back again until April 2019.
Heart breaking.

Once again, thanks to all who posted with support and encouragment, it mattered a great deal to me yesterday, I was on my knees, you helped me to my feet.

I'm glad you had a good night OP. It really doesn't surprise me you haven't had that call back today (speaking from experience of having to ring the adult social services emergency line in tears at 11pm when they closed for the weekend having promised to ring me that day).
I really hope you get somewhere with this and I'm glad you found your feet again x

It's all very draining and leaves not much energy to fight for your rights

Hard, sometimes, not to believe that's the intention - after all, if you wear folk down sufficiently there's the tantalising possibility they might shut up and go away

Glad you at least had a better night, Respite. It's no surprise at all you've had no response and I'm not going to lie and suggest they'll hurry a reply because I'm almost certain they won't - even if, as so often, they claim to be "aghast" about it

The good news is that they know you're onto this rather than simply rolling over, so try to keep up all the pressure you can and come to MN for a breather whenever you feel like it. Some may have experience and suggestions to share and others might simply want to wish you well, but overall you can be sure (practically) everyone's rooting for you

Glad you have started the ball rolling and are trying to get the information you should have had from the SW. I suspect you haven't heard anything because there will be some arse covering activity needed before they can come back to you with their story facts.

Try and have a relaxing weekend and forget about it as much as you can until first thing Monday morning. Keep on keeping on, be persistent and don't let them fob you off. Respite care is absolutely vital both for the carer and the recipient. It absolutely should not be subject to random funding cuts.

@Respite24 I've just finished reading the full thread and just wanted to say sorry you're in this situation. It sounds utterly exhausting. I do hope someone listens

OP please ensure you make a note of the date and time you have phoned and what has been said. There is absolutely NO excuse for SW not to have phoned you if just to say they needed to speak to their line manager. They have ignored you.

They don't need to speak to their manager to send you a copy of the re-assessment surely? They must know the date it was done. Their system must have recorded when they 'tried to contact you' haha.

There is a huge focus on ensuring people with learning disability and autism receive the appropriate care to meet their needs and enable them to live with a quality to their lives. Transforming Care.

Under Transforming Care you have the right to request a Care and Treatment Review (CTR). Please google it on NHS England web site. This will be arranged by your local NHS CCG. The 'panel' conducting the review of needs has to include an independent clinical reviewer and an expert by experience or expert with lived experience. The CTR can make recommendations about support and all elements relating to keeping the person safe and ensuring effective and appropriate care to support them. If Social Care don't make changes these recommendations may help if you then contact your MP. Make a formal complaint etc.

Hi. I just thought I'd update as tomorrow I have a meeting with my son's care coordinater, manager of day care and manager of respite service.
I finally. after 15+ phone calls and promises that they would get her to contact me, managed to catch his care coordinater.
Even then it was only because she answered the department phone, her horror at being 'captured' by me was audible.
She said she'd been off work sick for 3 months (she'd broken her shoulder and wrist) and was retiring in 9 days.
She reassured me that my son had 24 days until his review which was due in November.
I asked her to send a email to respite manager to confirm that, she assured me she would.
I asked for a carer's assessment, she said she would put it into the system and have one arranged.
She was going to email her line manager about both 'issues' I had rung about i.e. respite allowance and carer assessment.
This was 3rd September.
I heard nothing for 2 weeks, respite manager did not receive email.
So I rang back.
No record of call.
There is on my telephone though, and I would like them to explain how I know the details of her length of time and reason of sick leave as well as her early retirement and date.
New care coordinater has arranged review assessment for son, to take place in our home, as I said upthread, the day centre and respite manager are both going to attend.
The letter states that support could remain the same, decrease or increase as a result of the asessment.
My husband is using another day's holiday to make sure he can be here to support my son and I.
I have been ill with stress, I have diverticuar disease (first episode last year that led to two weeks in hospital) the stress of all of this has driven me to absolute distraction.
But still. I've carried on.I have no other choice.
Son had surgery on both eyes last week, happily it was day surgery (meant I didn't have to sleep in chair in men's ward) and he has recovered really well (silver linings).

I have been reading through this thread again, including all the links you all supplied and I just wanted to say thank you again to all of you who provided support and information.
It has been priceless to me today.
Sorry if post's a bit discombobulated, he's trying to get me to go to the 'build a bear' site (he has a new baby niece) so I've had to dash it all down.

Oh, and just for information, it wasn't the day centre that tried to charge him for transport, it was Social Services.

I hope your meeting tomorrow goes well!

Good luck tomorrow. Give as much information as you can on the impact of your caring role and the impact on your son’s wellbeing if respite were to be withdrawn.

Good luck OP. That was really shoddy service over the phone.

Good luck tomorrow

Just wanted to wish you luck xx