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.

Oh because you are too busy enjoying and justifying cutting money from the budgets of very vulnerable service users and pushing already exhausted carers to the absolute limit!

I'm not sure how you think I'm responsible for budget cuts from social care as a prison detox nurse and even when I was a support worker my responsibility was to provide care not get funding for it!

Go back to perusing your latest updates sent from your Conservative party membership

Sorry but this is hilarious. I'm certainly not a Tory supporter, can't stand them! My political views are far left.

The OP made her son's needs very clear in the original post.....

Do you live with your uncle and provide all his care needs??

The OP made her son's needs very clear in the original post.....

Not really, my uncles IQ is on 0.001 centile and he is still able to walk, dress himself etc despite having autism, medical and mobility needs. Quite clearly there's a range isn't there? I've got no idea from the OP what her sons capabilities are!

As for your second question, I work full time and my uncle goes to a day centre 4 days a week so what do you reckon?

IQ has fuck all to do with being able to dress yourself.

You working and him going to day centre gives absolutely no clue as to whether he lives with you or not!!

And as has been said IQ gives no clue about a persons personal care ability....

Then Fruit I suggest that you inform your empathy of your political views! I seriously laughed out loud there!

Back pedalling now are we! Starting to realise just how out of order you have been?

Now you admit that you can’t make that decision for OP, only she can, so why post after post inferring that she has misused the mobility component of her sons benefit?

You know nothing of her situation, you tried to make yourself sound important by using the term service users. Considering the topic on this post your employment was irrelevant. As was your calling them service users when you could have used patients!

Clearly OP knows what she is doing! Do you really think she would choose to go without the money that the mobility component provides just for the car to be of no use? That is a lot of money to allow to go down the drain on a car that is not needed! How about realising that disabled people weigh up the pros and cons before spending their mobility allowance on a car! Op isn’t stupid, she has been caring for her son for 30 years, she clearly has decided that he NEEDS a mobility car!

At least you have admitted that your constant posts about op choosing a car are irrelevant and therefore unless you have anything positive to contribute you can leave the thread and OP alone!

IQ has fuck all to do with being able to dress yourself.

You don't think IQ relates to learning ability? Why so?

IQ measures cognitive ability....
Cognitive abilities are the brain based skills and mental processes needed to carry out any task and have more to do with the mechanisms of how you learn, remember, and pay attention rather than any actual knowledge you have learned.

To be able to learn and remember how to dress yourself a certain amount of cognitive ability is needed. This is why IQ is measured in people with learning disabilities.

FruitCider
You were saying that OP shouldn’t use the mobility element to pay for a car if she then can’t use the car to take her son to the centre and back.

I'm not sure I did say that

Of course you did! Your point was that the OP should take her son or not have the mobility car! You’ve been saying it all through the thread ..........

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?

Why won't you take him if you have chosen to spend his disability money on a car?

So if you are unavailable why have you spent his money on a car, did you think it would drive itself? Why are you unavailable? If you are unavailable and chose to spend your sons money on a car he cannot use 4 days a week why do you bregudge paying £73 for 17 days worth of transport a month?

I've suggested that the OPs sons pip should be spent on transport that will benefit him the majority of the days he is OP? And that if the OP isn't willing to give up the car she should cover the £17 a week?

The other 4 days the car is just sat there as the OP isn't available (for whatever reason) to drive it.

What is unreasonable is refusal to pay £4 a day for door to door transport to a day centre on the basis that OP has a car that she has spent her sons money on and is refusing to use "because I'm not going back to my school run years". Which would indicate to me this is about the OP not wanting to drive her son to day care rather than being unavailable in the true sense of the word.

all I've questioned is why the money is spent on a car she can't utilise 4 days a week

how she expects her son to get there if she won't pay the fee and won't take him herself

So do you now agree it’s fair for the OP to have the mobility car but not take her son to the centre? As that’s not what you’ve been saying previously.

You know nothing of her situation, you tried to make yourself sound important by using the term service users

Well how else would you suggest I refer to my previous service users? They weren't patients as I was not providing a healthcare service, and I don't like the work client! Service user is a pretty well used term, but if you have a better suggestion tell me because I don't particularly like calling people service users either!

DD has a higher than average IQ, but still needs her clothes laid out in order at age 10. IQ and practical ability are 2 different things.

So do you now agree it’s fair for the OP to have the mobility car but not take her son to the centre? As that’s not what you’ve been saying previously.

What I actually said is that either the OP should use the car to take her son because she had chosen to spend his money on a car, pay for someone to drive the car or pay the £17 a week fee for community transport.

IQ and practical ability are 2 different things

But your daughters IQ means she has the cognitive ability to learn to do this task for herself. This is why IQ is relevant. My uncle will never be able to learn that he should not wear a vest and a long sleeved top when it's 32 degrees outside, or why he shouldn't place his plastic bin on his hob, or that continuously eating junk food is linked to his increasing size, because he has limited cognitive ability to learn.

op I really hope you get some luck with your phone call. I am still shocked that they have cut respite. even worse without involving you.
such a shame a GF has merailed the thread.
I do wish people would realise that working with people with disabilities is not the same as providing 24/7 care for your adult child. looking after a relative occasionally is not the same either.

I don't understand the suggestion that the OP drive her son herself. She is an informal carer under considerable pressure and entitled to support herself.

The Care Act 2014 eligibility outcomes includes maintaining relationships with others (family/ friends), making use of necessary facilities and accessing the local community. The OPs son has a car to enable him to achieve the above outcomes but requires support in order to be transported to day centre- surely it could be argued that the OP is already going above and beyond by transporting her son to all other appointments. If he uses his mobility money on going to day centre how will he access appointments, shops etc for all other aspects of daily living?

OP I would be going back to the LA and asking for a Care Act assessment. You also need to request a Care Act advocate. Request a copy of the assessment and plan (with sons consent or in his Best Interests). Essentially you want a breakdown of what the LA assess your sons needs to be and how they plan to meet them. If your son's needs have not changed I would be asking what evidence and justification there is for the plan to be changed.

You may also want to read up on the local ombudsman for social care- there have been some interesting outcomes and you may find the ombudsman a way forward. https://www.lgo.org.uk/information-centre/news/2018/jan/councils-must-meet-all-assessed-care-needs-says-ombudsman

Best wishes to you- sounds extremely stressful

What I actually said is that either the OP should use the car to take her son because she had chosen to spend his money on a car, pay for someone to drive the car or pay the £17 a week fee for community transport.

Of course the OP shouldn’t have to take her DS because she has chosen to spend the money on a mobility car.

OPs DS already pays the maximum which covers the transport so shouldn’t have to pay anything on top of this.

OP is happy to make the car available for SS to arrange someone to drive it but OP shouldn’t have to pay a driver herself.

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

If only.
I am in an identical position to the OP, except my dc is 35 and I've been caring for for dc since birth, obviously. LD, non-verbal,epileptic, doubly incontinent and some physical disabilities as well.
I've been on my knees several times over the years, but nothing happens and there is nothing to do but rally and regroup.
There is just no money and it's getting worse.

Regarding the OP, my dc has a Motability car as well, and I have always had to either pay for the transport provided or take her myself in her car. I choose to drive her there as then at least I'm in charge of what time we' leave the house.Things always happen to slow us up.
Also, I don't think the respite is connected as we have also just had it reduced from 28 days a year to 17 days.

It's all very draining and leaves not much energy to fight for your rights. I have been waiting for 10 years for an appropriate placement for supported living. Still waiting.
The point of this post was really to point out that threatening not to care for your disabled son/daughter does not have the dramatic effect on social services that one would hope, or that it ought.
They know you won't go through with it unless you have some sort of physical or mental breakdown, in which case they would have to act anyway. That's my experience.

Also I've just rtft and can't believe that an OP asking for help in a truly stressful situation has been subject to such nonsense posts.

I really hope she comes back as some of us have real life experience, actual sound advice and bloody empathy for what she is going through.

When was the last time you had a Carer's Assessment focussed on YOUR needs, love? Because you are entitled to one

Getting a carer's assessment isn't all that difficult. I've had several.
I was told at my assessments that although they could make reccommendations on what I need for support, there simply isn't the money or resources to provide them.

Have you every looked at direct payments Op?

The bloody motability car is a complete, (but bloody necessary) RED HERRING... I'm sure OP has investigated all the transport options for her son....over the 30 years .

Why are people being vile about this sodding car and its usage...

The real issue... The government is happy with people(mostly women) providing hundreds of hours for free every month....with sweet FA support...

Carers with 'carees' of this level of need have essentially given up their lives to do the state's support...I'm sure in OPs case is that she want the best for her son.

If OP had said: nope sorry don't want to look after my child... At any point.... The state would provide wrap around care....

Also being a 'carer' when you don't actually live with the person(and have your sleep continually disturbed), where someone else has all the care tasks and attorney duties... Taking someone for a day out / a couple of appointments... Is so far removed from the OPs position as to be jaw dropping.... It just doesn't, really doesn't compare...

Walk a day in their shoes....

Yes FruitCider someone with a very low iq is unlikely to learn to do certain things but that doesn't mean that someone with a higher iq can learn them. Even dla/pip assessment doesn't go that far in only considering iq.

Would you be able to pay someone to transport your son in his motability car? The whole thing sounds totally inconceivably horrible. Sympathies.

Op is saving the council thousands of pounds a year in care costs for her son. I think we should be speaking a little bit more respectfully. This is a national scandal we should be very angry about it.

If every informal carer gave up and stated they were not continuing to care, social care services would be fucked. We have neither the money nor the resources. Sorry, I know it’s not professional to say this but I’m not at work today and I am human.

I fully recognise the huge sacrifices thousands of carers make but society doesn’t always do the same. Sadly, not all professionals recognise this.

Care for individuals with LD and other complex needs can cost up to £1000-1500 per week. This varies, of course. If we are purely looking at finances, it makes sense to provide support to carers and ensure there is no breakdown.

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