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.

Again.
The car is available.
It is his car.
I am NOT driving him to the day centre, they are supporting his life not mine.
I am trying to protect his income.
That is my duty, no?
He is not able to travel alone, he has epilepsy, severe learning difficulties and autism.

The respite providers have spaces available, it is his nights of respite funding that has been cut.
According to the contract the Respite Manager forwarded to me today, the decision was made by his socialworker/care-coordinator on 13/06/18.
SW hasn't bothered to even inform me.
Respite Manager was arranging second half of year dates and realised my son's contracted times had changed.
She thought it was a typo 14/24 and emailed for clarity, to be told 'No, respite entitlement had been reassessed'.

Has anybody on this thread really deserved that outburst?
Read it back, imagine my life, remember my original post.
I think, yes.
It's a big hairy man we're talking about here.
Stressed?
Yeah, just a little bit.

OP, do you get Carers' Allowance in respect of your son? If so, this requires a minimum of 35 hours a week of caring. Would driving him where he needs to be not be a reasonable fulfilment of part of these caring hours (especially if it is to respite when you will not be caring for him for that period of time)?

I think what other posters and me don't understand is that if you've bought a motability car, why is it not being used by you to take your son to respite? It's a simple enough question that hasnt been explained clearly

Especially when you say he jas sole use of the car

Love, I'm just sending you a hug- I know very well the toll that caring takes on your physical and mental health. I think an advocate and contacting your MP are excellent suggestions.

I think the OP already does far more than 35 hours of caring a week without driving her son to day centre.

Respite24 Not sure if it will be of any help, but could you obtain some advice from your local citizens advice bureau? At least it would be free, and they often can contact specialist legal advice in the appropriate area.
Lots of people don't seem, to understand on this thread, but I promise you I do. Me & My sister dont get any respite whatsoever for my mum, and it's nearly destroyed me after all these years of 24hr care, hence mum having to move in with my sister at the end of this year. Unless people have been there, they are never going to understand. And that's how us unpaid family carers get away with being treated so dreadfully.
and to you and I hope you find a solution that works for you and your family

FuzzyCustard
My son is at day centre tues-fri from 9.30-3,30 all the rest of the time he is with me.
Waking nights 4 out of 7.
I am in receipt of carers allowance, a princely sum it is too.

KinkyAfro
You don't buy a motabilty car, you lease it.
I drive him to respite, not to day centre.
Day centre transport was included in his costs, SS have decided not to include it in his budget as he recieves mobility component.
Service users that don't have mobility component do not have to contribute from their PIP or ESA. It is paid by SS.

You must be exhausted Op, I cannot imagine how I would cope with caring for someone for more than 30 years, especially with elderly parents on top for some time too.

The cuts are terrible and it must be really distressing to see your respite vanish. I hope you can get things sorted out, I think it sounds like you’ve had a few good suggestions regarding asking why it has been reduced and then working from there.

Yes, I get that Spikeyball, but I'm still not sure why the OP is digging her heels in about the transport issue.
FWIW, I am a carer too. I spend a huge amount of my life driving from A to B and back again. Ad infinitum.

I'm going to preface everything I say with the fact that it's absolutely shocking that the reduction in respite has not been properly communicated to you in writing by the local authority, and a reassessment of needs has not taken place. Appalling, quite frankly and you have grounds for complaint in that respect.

There is a chance that the two things are linked but only the local authority can answer that for you.

From a social work point of view though every single local authority in the country is making swingeing cuts to services. My local authority has cut all services that they don't have a legal/statutory duty to provide and that includes funded transport for adults to day centres. The goalposts haven't just been moved for LAs, they have been removed and chucked on a bonfire.

In all honesty if I was the social worker assigned to your son's case I would be having an extremely hard time justifying to my manager why he should receive additional funding to transport him to day centre/ respite when he has a motability car at his disposal. I would be willing to bet that it would be a flat out 'not a chance'.

I get that you are probably on your arse caring for him and that this seems like pettiness on behalf of the local authority for what is essentially a few quid a week, but ultimately at some point in the past you made a decision to use his mobility money to fund a vehicle and the local authority are now taking that vehicle into account as part of their 'assessment' (although I use that word loosely given they don't appear to have carried out a proper assessment). Essentially the public purse has been funding him twice for mobility and the local authority has (quite rightly) said 'we can't afford to do that any more'.

lots of previously 'generous' (ha) respite arrangements are being dramatically cut though for the same budgetary reasons. So it may be linked or it may just be an unlucky double whammy.

I'm sorry I'm struggling to keep up.
Also sorry for getting wound up.

Thank you so much to all of you who understand, it's heartening it a world that seems so hard faced sometimes.

FuzzyCustard the transport charging policy is not fair. They are only charging those who receive mobility pip.

My apologies to you as I feel some of these post clearly do not understand the emotional and physical exhaustion of looking after a child with learning disabilities and autism.

I am a foster carer and look after a child with such needs and the fact that you have only had respite later in life I must say well done.

Social services have the last seven years cut back quite a lot.

Unfortunately I have found that at times to get listened to you will have to threaten if this is not offered to you your son may need full time residential care (which would cost them loads and loads more ).

Get an advocacy involved and fight for this.

OP can you say which county you are in?

If im reading this right the respite manager has the space and wants to keep him but his Social worker/care coordinator decided to cut his entitlement?

If that is correct then you need to set up a meeting with them ASAP and find out what is going on?

My 12 yr old has autism, learning disabilities etc and I'm shocked that they would make this decision without consulting you. The social worker is suppose to be an advocate for your son and fighting for him not going against him.

Can you appeal this decision? I would certainly complain in writing so there is a record. Speak to your local politicians and see if anyone is willing to back you up. I would also consider going to the local press. Although I would hate to have my personal business in the papers sometimes you have to publicly shame these people to get what you want.

@FuzzyCustard How long have you been a carer? Do you live with the person you care for?

Yes hatgirl It probably is a double whammy- though they haven't invoice him for transport costs, 18 months post-meeting- I could live with that.
I fought to keep his income but totally understand the grinding cost of austerity...but losing the respite...well, it might be the straw that breaks the camel's back.
I'm so exhausted by it all.
Thank you for your input.

Shocking behaviour!

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.

You are an angel. Nothing I could write here could convey how amazing I think you are

Oh love
I'm no help other than to say I also think it's unrelated to the motability component.

No one can comprehend your day unless they've been there. System absolutely sucks.

I'm here to primarily leave you these

You also can't compare your son's situation to others using the services unless you have in-depth knowledge of their finial situations and care plans.

Social services may well be paying for other peopes transport, but that will be because they neither have the funds or the alternatives means to transport themselves but have been assessed as requiring day care. The transport will be included in the care costs that they are means tested for, so they may actually pay something towards them even if it isnt specifically identified as such.

It's a bit like funding for residential care homes, we don't just leave people out on the street if they don't have assets to pay for care, so we pay their care costs for them whilst people who own houses have to sell up.

Your son does have the mobility component, therefore the LA take that into account and assume he can fund his transport to day care himself.

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

I'm in England.
I rang as soon as Respite Manager got in touch with me, son's Care-Coordinator (wish there was an abbreviation for that!) was not in office, she may be in tomorrow, I will just have to ring until I can contact her.

Had son at hospital today, another op needed and another hospital appointment tomorrow as follow-up from surgery done in July.
It's a laugh a minute.

You’re doing a great job caring for him however I think you are wrong on the transport thing. You’ve basically got a car sitting at home for over half the week. I don’t think that is the best use of his mobility allowance. Surely the fact you have the car to drive on his behalf suggests that you do drive him to all the things he attends as it can’t drive itself

I do however think you are amazing providing the care that you do

hatgirl my son is means tested he has only had DLA/PIP and ESA as income.
The money to be assessed is ESA and savings.
He pays maximum allowed for his daycare and also for his respite. \they are not 'free'. They are deducted from his income/benefits.