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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Respite taken away.

275 replies

Respite24 · 16/08/2018 16:54

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.

OP posts:
Samcro · 16/08/2018 16:57

sorry no advise but that is bad. its so annoying as residential is way more expensive. so sorry you r going through this (24 nights is such a small amount of respite)

UpstartCrow · 16/08/2018 17:00

Go to your MP and get them on it. Good luck Flowers

lemonsandlimes123 · 16/08/2018 17:03

Given that you son is 30 and I presume doesn't drive but clearly does have other transport costs then it would appear that the expectation is that you would spend the mobility component of his benefits on the transport he requires to access the centre rather than a motability car. I am not suggesting it is fair but it seems as if you receive a certain amount of money to assist with his transport and you have chosen to spend it on a car which is then not being used to transport him to the centre he needs to attend.

Travis1 · 16/08/2018 17:04

Can you get the advocate involved again? Does seem strange that they've reduced his nights without consultation.

RayRayBidet · 16/08/2018 17:04

The funding for the respite has probably been cut

Respite24 · 16/08/2018 17:05

The car is available for him to use, I use it for solely for him.
They don't employ me.

OP posts:
gingeristhenewblack43 · 16/08/2018 17:08

Has your son had a recent well being assessment, and have you had a carer's assessment? If not contact your SW and ask for one, and also ask why the number of nights respite he has has been reduced. This could / should not have been done without an assessment and subsequent support plan.

If your son does not have a named SW you can speak to a duty SW.

lemonsandlimes123 · 16/08/2018 17:08

I wasn't suggesting you don't use the car solely for him, simply that you have chosen to spend the money on the car but actually his transport need 4 days a week is not a car.

I don't understand the relevance of them employing you, sorry

Littlebluebird123 · 16/08/2018 17:09

My BIL is having a similar issue. They didn't refuse to pay anything though (they haven't been asked) but his respite is currently nil. They keep saying that nowhere is able to take him. That the places he has gone previously have changed regs or aren't cost effective. We've even offered to pay the difference (as MIL is full time carer and they both need the break). We are still waiting on an outcome.
I'm sorry this is happening to you. It seems regs/payments change without warning and you just seem to get the end decision.
Do you have a care manager or someone you can talk to?

Respite24 · 16/08/2018 17:10

Thank you, yes, I think the Advocate is the best way to go.
I have tried to ring the ALD team but no-one in office.
I appreciate that SS are under pressure but so am I.
My son is doubly incontinent and has high anxiety levels, he caren is exhausting me, I will not be able to care for him at home without respite, then his care costs would go through the roof.

OP posts:
Ilovecamping · 16/08/2018 17:11

Surely if the car is for his mobility, why can’t you take him in his car?

Respite24 · 16/08/2018 17:12

I don't understand the relevance of them employing you, sorry
Who is going to drive the car?

OP posts:
bluestarthread · 16/08/2018 17:12

God that's awful. You're certainly NBU.
14 nights respite is only once a month with a couple of 'emergencies'. If you go away for a week then do you sacrifice 4/5 months of respite?
My daughter is only 12 and we're seeing massive cutbacks and our Direct Payment money is not even referred to as respite anymore has to be 'enabling' for an activity. To be honest we are struggling to use her allowance on the things that they say it can be used on - therefore it will be cut again next year. But actually there are times that we as a family NEED respite.
I try not to think too far ahead but she is going to need care for her whole life as your son does. National Autistic society might be worth a call, I've heard of very supportive things from them. You surely have a right to appeal especially as there was no consultation.
I am fuming on your behalf. Wishing you well x

chickenowner · 16/08/2018 17:13

Forgive me if this is a stupid question, but can't you drive him to the centre and back yourself?

lemonsandlimes123 · 16/08/2018 17:14

Who's is going to drive the car?

That is kind of my point. 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. It may be that you need to change that choice? Is the reason that you cannot drive the car that you are working elsewhere?

Respite24 · 16/08/2018 17:14

Surely if the car is for his mobility, why can’t you take him in his car?

It's not the school run. He's 30.

OP posts:
Respite24 · 16/08/2018 17:16

It meets the needs of his constant hospital appointments in three specialist hospitals in three Counties, not to mention boot fitting, hear aids, chiropidist, GP, dentists...

OP posts:
gingergenius · 16/08/2018 17:16

Sorry I'm a bit confused - why are you not taking him to the centre in the car? You don't have to be employed by them to do that, surely? Apologies if I sound dense, I just don't know why the car can't be used to get him where he needs to go?

lemonsandlimes123 · 16/08/2018 17:18

He may well be 30 but reality is other 30 year olds would be driving themselves, he can't. By spending the mobility component on a car you are choosing a course of action that will always involve a 3rd party to drive the car. You can't have it both ways.

chickenowner · 16/08/2018 17:18

I'm not sure why you are saying 'it's not the school run'. If the car is for his needs then SURELY being taken to the centre and back is exactly what it should be being used for.

chickenowner · 16/08/2018 17:19

I'm not trying to be goady, I just don't understand what you are saying.

C0untDucku1a · 16/08/2018 17:19

Can he actually drive?

lemonsandlimes123 · 16/08/2018 17:19

Why do you think that taking him to the day centre is different from taking him to the hospital or other appointments?

Ilovecamping · 16/08/2018 17:20

If you are not prepared to drive the car get rid of it and use the money for taxis

MrsChollySawcutt · 16/08/2018 17:21

I don't think the transport issue is related to the cut in respite provision. Sadly I think that's probably the result of the latest round of Local Authority cuts.

Email the LA and ask why the respite days have been reduced so drastically.

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