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.

Dont you get it, there is no facility, there are no round the clock care givers, of any description, trained or otherwise.

As I have said, I have known young people in this is situation end up in a police cell, then be put in a secure mental hopsital, where there is no other child, no appropriate care, just being locked in a room on cctv, being monitored so that if they self harmed staff could enter and restrain them

There wasnt even anyone available to feed them

This is so hard to read. How do people like KP get government funded full time care for her disabled son? Not that he shouldn’t have it but it should be available for everyone, not just because they’re famous, especially with all the money she’s wasted and could have paid herself. Write to your MP. Having little sleep is a health concern that many people don’t realise .

Same with my autistic DS. He doesn’t sleep and is violent.

middle rate DLA because no mobility issues.

fuck all respite.

Huge sympathies OP

@MelchiorsMistress agreed.i feel instead of paying private companies, the Government need to open special school like facilities with overnight care,local authority run establishments with appropriately trained staff,they need to do big media campaigns advertising Special Needs positions as good careers which are paid well and have perks.i was told the week my son stayed at the private outsourced respite cost SW £15000!my god are the Government stupid!

This is so true and has been happening years ,I used to be a mental health nurse and worked on,s picu( psychiatric intensive care unit ) many young disabled adults ended up.there not because they were mentally ill but because there was no where else w for them to.go ,and were often sedated by staff because of t challenging behaviour,in fact t the youngest wasn't even an adult he was 15
As a parent of a disabled child,it terrifies,me my child could end up.in such a place .

If they took him for a week before why cant they again? And why cant they keep him in that place for longer or permanently- they can but theyd rather you do it which is why they scared you silly about care homes and got you to take him home.

As someone else said it is the same for elderly people, social workers will try anything to get you to take your family member home as long as they can get you to say you will take on the work even if you physically and mentally arent capable. You will see everywhere on MN people telling others do not say you will provide care because they will then let you - make it clear you cannot provide care and force them to find a placement.
These placements are found eventually.
(Not bashing SW they are just doing what they can but they arent living your life)

Care homes are a viable option as well and its awful that they scared you over them. Long term this might be an option particularly if you are older or when your child turns into an adult.

This maybe isnt what you want right now but if you are in that position again where you cant see a way out and are at the end then bear it in mind. You do not have to suffer for the rest of your life

So sorry, OP

I am very sorry. Also unable to get respite. Been on the waiting list for over a year for a "carers assessment" when I said I couldn't cope any longer. I know other families locally who have direct care packages and nobody turns up. The agency apologises but they can't force people to go along. It's a very hard. low paid job, it's difficult to retain/attract staff.

As to tell SW and they'll put him in a care home. There are no places, as everyone says. Kids needing NHS mental health beds are sent hundreds of miles from home often.

Also, I have seen several of those care homes on Panorama. How would you know the people looking after your child are decent?

There is no need for an expensive care home place when you have a loving family who will do the work well and for free if they are given a bit of respite and support.

It depends on the needs of the child ,my friend has a son whose in a residential school,his needs are very complex and it took.a lot of soul searching for my friend to make the decision it was the best place for him ,but the places are few and far between and cost £££,sand only available to children with the most need ,and the schools my friends son has been placed in is a six hour drive away ,so they can only visits every five or six weeks .

"So, might it be better for him for you to inform Social Services that you will no longer providing care? Don't feel guilty."

Social Services will not do anything in this situation. They have nowhere to place severely disabled children.

@Bababear987 that place was one of respite places which have shut!what @Nimbostratus100 has said is very true, there was a documentary about three families near me who had this happen,two of their sons are locked up in Carstairs psychiatric jail with the most dangerous criminals,those families have been fighting for years to get them out.the only crimes their sons committed was being born disabled.

Just some of the well meaning but oblivious comments here show you op how the majority of people lack education in this area.

YANBU, I don't have any answers except we need a complete overhaul in how families like ours are supported and an emphasis on early intervention and easy access to family support.

As a apparent of a serverly disabled child I am always running on empty, hardly any sleep and then being made to fight tooth and nail for help is often too much, I do not have the reserves for every incident of hoop jumping I am forced to endure.

Every day you feel like giving up, I'm not looking forward to the future either.

That is a horrific way to live. My heart goes out to you OP.

It's not even that there are only placements for children with the most severe needs. There are just no placements. I know parents who have been waiting several years for a residential placement.

It is no life, its existing .wish i wasnt so damn tired and could go on a big crusade and fight the government publicly!!

It is terrible. Respite used to be provided directly by the state. Once they were forced to close respite centres and everything went private, costs soared. So very little gets paid for and the carers are not available anyway.
There was far more available in my City twenty years ago than there is now.

I really feel for you. Lots of families I work with have a care package and a budget but there is no one to do the job. There isn't a bank of trained, caring staff who can pick up the care referral for vulnerable families. There aren't any well resourced, full time run, full of well trained carers centres where children can be cared for. It's just not there.

I mean this kindly, but given that you are so completely overwhelmed trying to provide care on your own, could it be that a residential "children's home" type placement is actually in his best interests? I know that the ideal is for every child to be placed with a family but there's no reason to suppose that a foster family would be any better able to cope than you, I am sure you have gone to gargantuan efforts to meet his needs and it has broken you. if he was in a residential setting there would be day staff and night staff so no-one is on duty 24-7, everyone can get some sleep, and you can be in his life providing love and support but no longer on your knees due to having no sleep and sole responsibility for his overwhelming needs.

@FeinCuroxiVooz Read the thread. There are none available.

and this whole thread is about the fact that these placements dont exist

Where do you think.these might be available🤔

Childrens homes do exist, my daughter was placed there, looked after by trained carers, and taken to a special school when she couldn’t still attend, now she is in suported living nearby where I go and help on a volunteer basis. Her behaviour became extreme around 14/15 and was hospitalised for a year. The home was a 2 hours drive away. But this was about 10 years ago.

"But this was about 10 years ago."

It is much more difficult to find one now. Staffing is the biggest issue so children and young people who require high staff support are not being offered places.

@That80sgirl yes , it’s all very well being given direct payments isn’t it, but if there care no carers to employ and no respite to go to it’s not much help is it . Or possibly a few nights a year at a respite flat which is up 2 flights of stairs which she can’t manage 🙄. We can use carers at a particular centre half an hour away but now they can’t get staff who can drive so I have to drive there , and either go home for an hour or hang around. Not exactly a break is it . I’m over 60 now and I’m just so tired , physically and particularly mentally.

I don't think most people realise that most residential provision for disabled children is privately owned and run by businesses whose main aim is to make a profit and have no duty to take any child that will not make good business sense for them.