To ask that care is Actually provided?

[That80sgirl]

My son has severe disabilities and life is extremely hard at home,mostly dictated by challenging behaviours and little or no sleep.He was awarded 30 hours a year respite three years ago after i had a breakdown and said to SW i couldn't do it anymore and i was going to jump in front of a train.Since then we have used 15 of those hours in 3 years as there is not enough care staff and two centres which took him have since shut down, additionally Barnados took him out once a week for four hours but that too stopped 2 years ago due to no staff.

This is a very real and dangerous issue being ignored by our Government,families like mine are ignored and and left to suffer and eventually break down as the stress is to great. Parents like me end up severely depressed, highly medicated and suicidal. All care is outsourced and the government flings crazy money at these companies ,its not working but noone is fixing it.

Im on day 12 of no sleep,i can't even function and my social worker has told me theres not much they can do,the situation is same everywhere.

PS @mumsnet do not move my thread to SN it wont get any response and i am having a general conversation about lack of care services which i feel are unreasonable so it fits being here.

My son gets direct payments but there is no one who has training ( he has occasional very challenging behaviour) to do it. The continuing care process has been going on for months to try to get funding for specialist carers. His own school has residential places but won't take children requiring high staffing because of staffing shortages.

There seems to be a common practice of making already harassed parents go through the battle of receiving respite, to eventually be awarded it then not able to use it due to resources, surely surely there must be another way,system is failing

This is awful, I thought I read 30 hours respite a year wrong! Should be per week!

I have done a lot of works as a contractor for The Disabilities Trust, I have always been super impressed with the homely feel and adaptations made to suit each person.

I'm guessing to get your young adult in to one of these locations is very difficult.

@cheeseisniceyah no you read right 30 hours a year for a severley disabled child, and my sw said i should be grateful its more than most!!

A friend of mine has an 8 year old who has significant needs. He's limited verbally, violent, doesn't sleep and there is nowhere for him to go. My friends marriage is on the rocks, her house has been destroyed, her neighbours are complaining, his older brother lives with a family member after he was attacked in his sleep and my friend is at breaking point.

Social services wanted to place the older son but not the one with additional needs.

There is no where for her younger son to go, she was offered 15 hours respite a year but he's never been because there's no one to take him.

I am in he USA and things are different, I know. My DD2 is director of a misc. care facility that takes End of Life, Memory Care Adults, and has a respite ward for 4 - 30 days. The respite ward takes age 16 and up. If the guest needs more care than the staff can provide then the home will provide private duty carers (paid for by the client). It is a secure facility, but the client is given as much freedom as possible and stays on the same medication, diet, and schedule as they have at home.
Most of this is paid by insurance, which I understand you do not normally have.
Maybe your NHS could do respite in a facility?

Is that all.over the USA?
I.ask.because im.in a Facebook group.which is based in America for parents of severely autistic children with learning disabilities and most seem to.have the same issues that we have here with respite ..

Hello. Us too. We have been "given" 10 hours a week and overnight respite once a month since sept 2021 but are unable to use any of it as our local children's respite services have been closed since COVID with no plans to reopen, and we can't find anyone who will take a job as a pa. And we need 2:1 too.

I just keep waiting to see a news story about just how dangerous this is but there is nothing!

That80sgirl, I really feel for you so much, it's a travesty.
You might have already tried this, but have you tried advertising through school? I teach in a school for children with very complex behavioural needs and our families often find PAs through us. They send in an advert with info about their child and the hours needed and we put them up in school. Often our school staff or the agency staff that we use regularly will pick up PA hours, even for overnights. With children who have 2 to 1 care needs, often our younger staff will pair up with their friends and work together with a child.
Please make school aware of how challenging you're finding things. Sometimes (not always) we have been able to take on some of the advocating and battling and the planets have aligned around respite care.

@GeorgiaGirl52 End of life care, dementia and respite is provided here. The issue is the state moved away from state care towards private care. And the private sector are not interested in the most complex disabled children because getting staff able to work with children with high needs is very difficult. And recruiting carers directly is almost impossible. It is hard and difficult work.

I have a severely disabled child. She’s 5.
I have recently been “awarded” 4 hours a week respite care… but this is the fun part. I have to advertise, interview carers, employ them, train them, insure them, organise their annual leave.
And I can only offer £10 something an hour.
I thought I’d found one - she has a child of her own and wanted to bring her to my home when caring from my child who actually needs 2-1 care not 0.5 care.
plus what the fuck good is 4 hours during the day when I’ll just be worried about her if the carers think that’s a good solution..
my DD barely sleeps- that’s where I need respite. Not for two hours in her own home with another child screaming and dancing around.. the respite is apparently so I can “have a coffee with a friend “ quote from our social worker.
Yes that’ll keep me going all week for social interaction and rest… when during the day my friends are at work.
Sigh.
this country is fucked.

Paid carers are so badly that so many have left and gone into other industries. On a lesser level the same for sen TA in schools and special schools. Paid a pittance, only paid pro rata, very few permanent contracts. One of my kids would love to be a sen TA when he is older but iv actively discouraged him as he couldn't make a living.

It has never been well paid. But when carers were employed directly by the local authority they had decent annual leave and pension and paid sick leave as well as crucially a full tine job. Not many people want a small number of hours, and juggling multiple jobs with a small number of hours would be difficult.

How old is he & where do you live?
Have you got a community LD nurse, they are usually a great support & source of help.
Covid has destroyed a really fragile social care sector, but in a crisis there is usually still some help that can be offered.

How absolutely shit OP 😞

What I’ve been reading is truly awful & heartbreaking for a lot of people.
I don’t know the answer, but the whole system needs to be re-structured.
what on earth happens when you lovely parents get too old & frail to enable you to do the care? Frightening thought. 😞

This is the world now where young people don’t want to have a proper job in teaching, nursing, caring etc, they all want to be influencers, have a YouTube channel, be on only fans etc…, the world is fucked!

No real solution op but I'm so sorry, this sounds incredibly hard.

I have a friend who had to say to SS she could no longer parent her dd at home as she was having a breakdown. The dd has ended up in a nice flat with 2-1 carer support at all times. It look a long time to arrange though, even as an emergancy.

And they will be as rare as Hens teeth ,as had been said up.thread st for most.people will.end up.in secure accommodation ,most won't end up in a lovely flat with 2:1 carers
it's all very well.for people who have no.idea. to suggest these things but in reality the vast,majority of parents will carry on as they have no option.

This isn't something I've experienced first hand but I do encounter stories like this often in my tangentially-related work. It's very upsetting and frustrating to read and I'm sure I cannot adequately imagine how it feels to live through.

It seems that it would be of benefit to everyone to fix this though! In addition to opening up experiences and opportunities for disabled peoole, professional carers could have decent jobs, parents could maintain better health and require less other support, they may even return to work, siblings would have less trauma and a better start in life, scarce mental health placings would be available for their intended recipients etc....I'm sure overall we would see plenty of societal benefits, outweighing the cost of training and employing these carers and providing appropriate facilities. The problem is the mismatch between who pays the costs and who and when these benefits arise - and this is exactly when the government is supposed to step in.

I think handing these contracts to private companies has very much to answer for. Their incentives are all wrong and they seem to be unable to provide decent employment or acceptable levels of care under their profits strategies. We need a legislative solution.

30 hours per YEAR?! What's that supposed to do?! Bloody hell OP, I'm sorry you're getting so little support.

30 hours a year - that you do not even receive - is just outrageous. What’s you spoken to your MP? I’m sure you have.

However I think if you relinquish rights you relinquish them all ie you have no rights to any visitation at all.

We asked our LA to take DD into S22 voluntary care, when we were at the end of our tether; and they refused!

They did offer us carers/nurses at home 24/7 after that though.

Years later, I asked the Director of Residential Services, an experienced social worker at her school, why they refused - and he said, they knew with someone as complex as DD, the parents could do a better job than any committee.

This is one of the very few threads on here that you wish a journalist would actually pick up and highlight. The system is broken but that's not good enough. Thinking of you op x

Why no rights to visit exactly? Do people who's parents are in care homes have no right to visit? Wtf?