Active discussions

Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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:
Claw001 · 16/08/2018 22:00

Lots of people have social care packages. If getting a mini bus, with others, to a day centre is part of that package. OP does not have to use the car!

FruitCider · 16/08/2018 22:03

Do you think because he has a motability car that the relatives should also go and pick him up and take him back and forwards to the day centre? (Impossible as both work and are ‘unavailable’

No, however I would expect the mobility component of anyone's pip to be spent on a mode of transport that meets their needs the majority of the time. This is the reason my uncle doesn't have a notability car - it's far cheaper for him to pay for transport to his day centre and get taxis/buses/lifts/walk the rest of the time. And I certainly wouldn't refuse to pay for one mode of transport because he's already paid for another.

willstarttomorrow · 16/08/2018 22:07

OP you are doing an amazing job. Not sure where you are but if you are local to me I would be happy to advocate. As a social worker I would like to apologise. Most social workers I know are amazing but some are shit (poor training and then 'yes' managers). The system is shit, you are let down massively and I am under no illusion that it is harder for parents than frustrated workers. Outside work I am battling my own issues also as a single parent, but we do care and want the best for our children and families. We have little autonomy these days but it is a privilege to work with families and children.

mumsastudent · 16/08/2018 22:07

fruitcider if you have had problems with being a carer than I am surprised you don't have more empathy for others - please read what I said earlier & others have said - what you are doing is unkind to op she is working hard & caring for the elderly is different to caring for your severely disabled adult dc. simply as a parent you know their is no end in site - your dc will live longer than you & somehow you have to keep going & as stated she needs a break autism severe LD & physical difficulties & probably the body of a young heavy man you do not understand what that combination can mean. If you cant say something kind please refrain otherwise some might assume your a troll - are you????

Claw001 · 16/08/2018 22:08

fruit the OP and her son are not you or your uncle. If your way works for you, great! Your way isn’t the only way and obviously won’t work for everyone!

You have no idea how often the OP needs to use the car with her son! You have no idea of his mobility needs. Do you really expect the OP to explain every aspect of her and her sons needs to you!

Kardashianlove · 16/08/2018 22:12

Not everyone can walk, get buses, taxis or lifts though.

The mobility car does meet my grandfathers needs for the majority of the time. The bus to the day centre meets his needs for the rest of the time.

For some people taxis, buses, etc are an option and a cheaper/better alternative. For others they are not possible. Can you not see that your uncle has chosen the best transport solution for his individual circumstances but this will be different for other people?

What would you propose as an alternative for my grandfather? Not have a mobility car and only go to the day centre, nowhere else? Or choose to have the mobility car but not go to the day centre as he’s ‘chosen to spend his pip on a car’ so shouldn’t be transported anywhere else?

SunnySkiesSleepsintheMorning · 16/08/2018 22:14

PIP/DLA mobility component is not taking into consideration when the local authority undertakes a financial assessment. However, when we (social workers) assess an individual, we also have to complete a travel assessment. We have to justify why we are arranging transport and why the person can’t make their own way or get other transport. There most certainly are people who access day services who can travel independently, although I recognise your son obviously cannot, However, it’s never black and white. As a social worker, I’d have that conversation with the individual and/or their family.

Social care is under massive pressure but it’s the right thing to have that conversation with the service user and their family/carer before we make changes.

OP, take care. Flowers

FruitCider · 16/08/2018 22:14

caring for the elderly is different to caring for your severely disabled adult dc.

My uncle isn't elderly 😳 he is in his 40's! Not sure where you got that impression from.

If you cant say something kind please refrain otherwise some might assume your a troll - are you????

I've been on MN for around 4 years with plenty of threads on here so if I am a troll I'm doing a good job! Seriously, I'm not. Having a different view point or expecting not to be sworn at does not make someone a troll.

needyourlovingtouch · 16/08/2018 22:18

Is the problem how he gets to the day centre in the days (as well as the nights).

I think the confusion arose because posters thought you just had to get him to respite for 14/24 nights of the year.

If the former, that explains why you wouldn't want to do 'the school run'. Thank you.

Dilemma is that you need the car to take him out places with you but don't want to be tied to taking him to daycare. Transport should be part of that?

needyourlovingtouch · 16/08/2018 22:18

Shit- forget my post. Just realised you answered those questions. Sorry OP

needyourlovingtouch · 16/08/2018 22:34

@FruitCider is simply sharing another point of view on a related experience. Surely they wouldn't get beaten down like that in real life!

elliejjtiny · 16/08/2018 22:37

I understand a bit of what you are going through OP. I have 2 sons who have complex needs, they are 10 and 5. I'm exhausted by 10 years of fighting so you must be on your knees. Totally understand why you need transport to the day centre. Transporting him yourself means you lose some (probably quite a lot) of your limited non caring time. I don't have any advice, sorry. I do know they are cutting everything down to the bare bones and then cutting some more. My 10 year old has lost all his dla and I'm waiting to hear about my 5 year old's renewal. This summer has been a bit of a nightmare to be honest.

danni0509 · 16/08/2018 23:20

Ellie have you appealed your 10 yr olds dla?

Why have they stopped it? What rate has he lost? It's ridiculous x

elliejjtiny · 16/08/2018 23:39

I have, mandatory reconsideration was turned down again so waiting for tribunal now. He was getting middle rate care high mobility and now he gets nothing. Apparently the paediatrician (who he sees for 15 minutes once a year) says he has improved. The school senco wrote a really long letter detailing his needs but the dwp said that the consultant 's opinion was more valid than mine or the school senco's because the consultant could be more impartial.

danni0509 · 16/08/2018 23:46

Ellie that's awful! Keep fighting!

My son is only seen for 15 mins once a year too! and the reports from them when they come through are always based on positives aren't they!

I can literally sit there and tell them everything that's not going well. my mum comes with us because my son is a 2 to 1 job out the house so she comes to assist but is also my witness what is said during appointment but when the report arrives it's all worded as if I've sat in there and been really positive about everything!

There's no need! X

WinehouseAmy · 17/08/2018 02:08

With those who have suggested that you take your son to the day centre in his motability car, I agree. He is in day centre four days a week, which is likely 32 hours a week. As you have stated - you are paid a 'princely sum' to care for your son. Therefore, I don't think you should begrudge the £17 fare a week (which from you original post seems to be most problematic).
I suggest that you contact your liaison officer to discuss respite care. Furthermore, I would suggest for your own and your sons benefit to trade in the motability care, which historically from your posts is not used to its full advantage and the money is put towards respite care which it sounds like you are in dire need of, and of which he would benefit from.

Fuck looking towards the future, your son will always be looked after, please just look after yourself. It sounds from your previous posts you really need it - please don't take this harshly.

Spikeyball · 17/08/2018 06:17

WinehouseAmy are you for real?

The OP will be getting £64.60 a week for caring for her son. That is all. For easily 100 hours work.You begrudge her that and you begrudge her son being able to get to appointments and have some sort of a life.
You are a disgrace.

Fruit you goady fucker are also a fucking disgrace.

PerfectlySymmetricalButtocks · 17/08/2018 06:47

@AllRoadsLeadToRadley I think you're needed on here.

FruitCider · 17/08/2018 06:54

Fruit you goady fucker are also a fucking disgrace

I'm a disgrace because 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?

Okie dokie.

PerfectlySymmetricalButtocks · 17/08/2018 07:06

Ugh. FruitCider have you actually seen how much the OP drives her DS to places? If he needs/wants to get somewhere, she drives him. He needs the car. She isn't available to drive him to/from the day centre every day.

Spikeyball · 17/08/2018 07:08

He shouldn't be using his mobility pip to fund transport to day centre because it is unlawful to expect him to.
Why do you persist in thinking you know better than her what her son needs? Your persistent hounding of a woman in a vulnerable position was a fucking disgrace.

GoatWithACoat · 17/08/2018 07:08

Again, this government is cutting funding which is used to support our most vulnerable citizens. It’s a disgrace. No advice op, but you have my support when it comes to Election Day. I will never ever vote for this Tory government which continues to destroy our social services and shit on the disabled

I’d just like to echo this. There is no justifiable reason to remove support for the most vulnerable in our society. The people who cannot change their situation in any way. Money for the disabled should have been ring fenced and increased even when cuts were being made elsewhere. This government is an absolute disgrace and I’m so sorry you have to go through this shit. Flowers

GoatWithACoat · 17/08/2018 07:11

As you have stated - you are paid a 'princely sum' to care for your son

She was being sarcastic you moron.

FruitCider · 17/08/2018 07:13

Ugh. FruitCider have you actually seen how much the OP drives her DS to places

On 3 days a week. The other 4 days the car is just sat there as the OP isn't available (for whatever reason) to drive it.

Anyway you seem to be missing the point. It isn't unreasonable to use motability to buy a car. 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.

FruitCider · 17/08/2018 07:16

He shouldn't be using his mobility pip to fund transport to day centre because it is unlawful to expect him to.

How so? I'm pretty sure it isn't but explain this to me if you wouldn't mind?

Why do you persist in thinking you know better than her what her son needs?

I'm pretty sure I haven't said this anywhere, all I've questioned is why the money is spent on a car she can't utilise 4 days a week

Your persistent hounding of a woman in a vulnerable position was a fucking disgrace.

Persistent hounding for attempting to engage in conversation? Is this a parallel universe or something?