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.

By the by OP my regards & sympathy :)

I know what you mean about some of the respite homes being grim, that’s what shocked me when my ds move from children services respite to adult respite there needs to be a serious shake up of what’s available.

I would ring your ds social worker and ask her if she can shed some light in the allocation reduction as he and you desperately need it.

To be honest I’d be very surprised if it was linked to the transport payments, and if it is that’s just bloody vindictive.

Am I correct that the mobility component of PIP does not have to be spent on a car and can be spent however his appointee (the OP) sees fit for the claimants benefit? PIP should not be included in any means testing either.

Therefore I don't understand how the LA can insist she uses his car to get him there when others, who may also get the mobility component of PIP but chose not to get a car, get free transport?

Perhaps OP thinks that if she drove him it takes time out of her respite, which is only 4 x 6 hours out of a 24 hour day, 7 day week. If he has separation anxiety she may not want to deal with a meltdown when she drops him off. It will also be a change to his routine which probably won't go down well.

OP Am so pleased that the respite is good!! So many are utter shit as you say.. .

Whoever said was op caring for 35 hours?? By my calculations... At least 140+ hours weekly...

Supporting someone with this level of need is exhausting... Doubly so when you have all the emotional anxieties that this is your child, who you hoped would have a happy rich healthy life... That you're hoping will outlive you, but are terrified for his future....

OP...

I used to find the phrase 'substantial risk of carer breakdown' often would make professionals sit up... They dont want you ill so they would have to find full time care for your lad!

I don't think ranting at strangers is going to help. It's just rude. People were only asking why you couldn't drive him. Better to take him than not go at all? And no I'm not goading you. I could not even imagine the hell you have to go through. Just saying, no need to be rude.

Bless you OP

I have a 5yr old son with complex needs learning disabilities etc, I can't imagine him at 30. I struggle to picture what he will be like this time next year tbh.

Sorry your still having to fight, it's exhausting, I don't know how your still managing 30 years down the line. X

Just wanted to send an unmumsnetty hug and some and to the OP. After a difficult day with a terrible 4 year old I'm counting my blessings - what a lot of stress you have. I wish the government would just trust people caring for their families that they need whatever they need and just stop with all the budget cuts.

Oh dear! Don't be nice, people. I'm in floods here.
Yes, he has a meltdown.
He has a meltdown every morning, he never wants to get up and go. Every morning.
Every.Single.Morning.
The only thing, the only thing that keeps him on track is that 'the bus is coming'.
Every afternoon he comes home and says 'I had a laugh today Mum, sorry about this morning'.
Every.Single.Afternoon.

And it all begins again the next day.

Thank you, thank you, thank you to those of you who understand.

Just as an aside, how do you go about getting a SW? I have self referred to the Young Persons Disabilities Team for an assessment twice in the last year and DS's Consultant has sent two letters backing me up too. Heard nothing.

"PIP should not be included in any means testing either."

Mobility pip must not be included. Care component can be but if it is spent on other things it has to be disregarded so in practice it shouldn't be included.
A quick Google has told me that the local authority is probably acting unlawfully in asking for mobility pip to be used for transport costs since it could already be used for other mobility related items/ expenditure.

starryskies78 it's just rude
Thank you for making me actually laugh out loud.

Ask for a copy of their reassessment?

They should have conducted an up to date carer and needs assessments before making changes.

You need to kick up a fuss op. The parents that campaign get loads but the ones who are just accepting and grateful for what's given are taken for a ride where I work. Sad but tru

@Respite24 have a 30 year old DS with SLD and health needs myself, and believe me I understand exactly where you're coming from

This might sound odd, but from experience I wouldn't necessarily pursue the respite; hell could freeze over before you're able to navigate the utterly obstructive system, and ultimately it won't really address the main issue which is surely his long term care

As I did with my own DS, I'd start the ball rolling on supported living instead, so that you can influence the process while you're still able and avoid a possibly traumatic situation arising in case of family loss in future

I absolutely get that you wouldn't really hand him over with a parting cry of "your problem!!", but in reality you may need to convince SS that this is the only option left. They probably didn't believe me when I said that DS would be "living in a shop doorway" if nothing was done, but after too long spent trying it sadly proved the only way to get any action

Please feel free to PM me if I can help, but just to add a positive note, you might well be surprised at the progress DS may make once in supported living. I expected so pitifully little, but the man I see now is hardly recognisable from what he once was - especially when he recently won an award for the service user who'd made the most progress in independence (and yes, I cried like an out-of-control lawn sprinkler )

FidgetyFingers we were allocated a SW when our ds was 10 and we were at the end of our tether and needed help.

It got to the point where we rung our autism nurse who was linked to his yearly assessments at the hospital and said we can’t cope your going to have to take him (both my husband and myself were crying) then before we knew it we had every resource throw our way, respite, social worker, support teams, OT.

It was just sad that it took the threat of putting our ds into care before any help and support was offered to us.

FidgetyFingers I can't really remember how, I think it was when my son was transitioning for Special Needs School and Children Services to Adult Services.
He was at his school from three until he was 19.
It is a social worker but job role is as Care-Coordinator. He is under Adult Learning Disabilities Team not Adult Social Care.

Sorry, I can't remember who asked but he is receipt of ESA Support group.
The money per se, isn't why I objected, it was the targeting of protected benefits, I felt I needed to protect his income from attack, IYSWIM.

Sorry no advice just wanted to say I couldn't imagine your daily routine and sending you hugs and postitive vibes.

You are right, some posters should walk a day in your shoes before they come goading with their 'my opinion is right and I'll find a flaw in your approach'.

Take care and I hope the respite gets sorted.

What is the car doing on the 4 days a week your son goes to respite? Why do you need a car for only 3 days a week?

My uncle has a significant learning disability, we spend the mobility portion of his pip on transport to a day centre and taxis because it's far cheaper than using the mobility component for a mobility car.

FruitCider is going to work the only time you go out of your house?

OP, just wanting to send best wishes. Close relative was in similar situation to you until 3 years ago, when her DP’s cancer and her arthritis finally made it impossible for them to take care of adult son with multiple disabilities at home. It was a really dark and difficult time for them to adjust to him being in a home. But he now loves where he lives (it’s not perfect but he is happy), he enjoys his relative independence and they have a level of freedom not experienced in 35 years, eg can go out for a meal or to see a show. They were reluctant for him to move out any earlier than necessary but I think they now regret the last couple of years, where none of them were happy.
Not sure if that’s helpful or not. I also want to say bog off to all the people who are being sensitive flowers about your frustration and bluntness- I really don’t think people have a clue how hard these situations can be.
Sorry no practical advice- family not in England so different rules.
Wishing you and your family all the best

FruitCider is going to work the only time you go out of your house?

No, but going to a day centre isn't the only time my uncle goes out either, my uncle doesn't rely on me driving him around to engage with society, he uses taxis for food shopping with my mum, he walks with his carer to the cinema, catches a bus with his carer to go bowling, I walk him to his sisters house etc. Sometimes we use my car, but on the whole we promote him to be as independent (with supervision and support) as possible.

Puzzled, so happy to read your son’s story and that he is doing well. Sounds very similar to my relative doing well with independence.

Hey OP. I work in social care, actually in child protection and this demonstrates why I would never make the move to disability. The money is just not there and I could assess needs but the funding is not there. I hate to say this but it is those who shout loudest and have the capacity to get their MP etc involved that get results. Most carers struggle to get a shower so this just
demonstrates the barriers you face.

Just so you understand every day social workers cannot sign off on decisions that cost money. In my authority we have panels for everything and senior managers have to be in agreement. There is a lot of jumping through hoops (and building in delay) before we can get to an agreement from management for anything that costs a lot of money. I am a social worker of 20 years and I know my families and children but Senior management, most of whom spent 2 years front line before moving up the ladder know better.

The system is shit. We know that. And I work in one of the better local authorities. You are amazing and please get any support available. Social care is very short sighted, money spent now can prevent the need to accomodate. Unfortunately my LA had to cope with 80 million pounds of cuts over a couple of years and local services suffer. Goverments do not care about long term impact, just meeting their aganda whilst in office. Unfortunately it is the most vulnerable that suffer and in the longer term this country has a massive problem on its hands.

FruitCider
It isn't my Uncle, it's my son.
The carer taking him to the cinema...it's me.
The carer wiping his bottom...it's me.
The carer taking him bowling...guess who?

Come back to me when you're 30 years into caring for your own son. HTH

So why is his car unavailable to transport him around 4 days a week? What is the car doing when he is at the day centre? Why won't you take him if you have chosen to spend his disability money on a car?