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.

I am so sorry you are in this situation

No advice or help from me at all, I am so sorry

I used to offer respite care, but the red tape became overwhelming, so I stopped years ago. I am no longer healthy enough to return to it.

There isnt an answer - I considered it to be voluntary, I was paid an "allowance" but it didnt cover the cost of offering the service - providing this for decade cost me thousands

I hope you find a service that can take on some of the care for you, but I realise that depends on someone somewhere deciding that is what they want to do with their life, largely for altruistic reasons.

I dont know what to say

sending you lots of love and prayers xxxx

30 hours per year is a travesty

I'm so sorry you are not getting the support you absolutely do deserve. Is your Son under adult or children's services?

Unfortunately you are right ,my son has severe autism and learning disabilities he's nearly 13 ,currently we get one day a week in the school holidays at a special needs play scheme ,we have been awarded two nights a month respite from before Xmas ,but have no idea when or if this will.start ,and also a Saturday club every other Saturday ,again I have no idea when this will start .

Most people have no idea how little (if any) actual help is there for parents of children with significant needs and challenging behaviour. It is scandalous.

@Nimbostratus100 i don't know what the answer is,i just know the system is broken. So many kids are disabled, so many families like mine,once we have jumped through all the hoops and been awarded a useless care package we are ignored, box has been ticked, backs covered. No one in any position of authority to change things actually care.i actually feel like hitting my head off the floor like my son does repeatedly, its so frustrating ,so hopeless .

Mine is 32. I get Direct Payments or whatever they call it now , including an element for respite . What flipping respite , hard enough to get carers anyway . I’m older and tired , but I have to carry on . It’s rubbish x

That's horrendous.

I know nothing about the system for disabled children but I do know that sometimes the only way to get care for a very elderly person, is for the relatives to just refuse to do it.

It sounds to me like your very life is at stake.

Your child needs you alive.

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

Because of course it's just that simple ,would you walk away from your child ?
your right you know nothing .

@x2boys

She's suicidal

@QuertyGirl tried that they took him for a week pre pandemic and then guilt tripped me when i was vulnerable, highly stressed and medicated.basically scared me about how hed end up in a care home and its hard to regain control once that happens. SW know its messed up,they just want you off the phone, its too uncomfortable

I was going to say that too although in sure some people will get nasty but...

If the care giver is genuinly living no life, is suicidal and only existing then I think it's a fair question. If you have everything, what else is there, waste your life being miserable

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

Life is incredibly hard with a disabled child I know because it's my life ,
but most parents won't just walk away and if we did what do you think would happen to the children ,?
there is no answer .

so where do you think he will end up tonight if the OP refuses to care for him any further?

Do you think that Social services have secret, equipped, fully staffed placements ready and waiting, that they dont bother to tell anyone about until the parents give up completely?

There is no one and nowhere, he will most likely firstly go to a police cell, then maybe end up in a secure home, with the emphasis on the "secure" rather than the "home" so in other words contained somewhere by force, without any real care available, locked up and viewed on CCTV so staff can intervene to prevent self harm by force if they notice in time,

sorry OP, I know I am painting a really bleak picture here, and its horrible, but I am sure you are already aware, and this poster isnt, of what happens when parents eventually snap and abandon their child

@Sahara123 ive tried looking for private help where id pay a person with direct payments, but unfortunately its seems impossible to find one person whos actually able to look after him, nevermind 2!he needs 2:1 care at all times. So sorry you are tired,ive not had one day of not being tired since he was born.

Surely the child goes into a facility with round the clock trained care givers that can provide care better than an exhausted suicidal person who is on the edge of a cliff can.

The have to provide care in these circumstances.

The system is dreadful.
A friend of mine does respite care for a family and loves doing it. Child has significant needs and their school can no longer accommodate them. Not sure how the family are coping.
Another friend works for a charity that helps people access services (not child related) commented that some councils are spending up to 70% of their budget on social care. Most of which is outsourced to private companies who are charging extraordinary prices for places/services.
Lots and lots of money is going on care, but it seems to be creating less capacity and certainly isn't trickling down to salaries or front line services.

How old is your son @That80sgirl ? I really wish I was in a position to offer to help

Where ????

Maybe this needs to happen again?

Your life is valuable too.

I hope you find help soon - I know what suicidal feels like.

In case Mumsnet get worried i am not currently suicidal, just a very tired,wired, stressed,frustrated and angry mum about a situation which desperately needs a Government official to sort out,immediately preferable!

Excuse me if I appear daft but would the local council befriender scheme be of use? I signed up to it and I am sure SN in the community was an option to assist.

There is no simple answer ,in my LEA we have a respite house ,where disabled children can go for up.to four nights a month ,but the resources are not limitless ,and my child is currently in a waiting list to.go.,there are far more disabled children than places available ,and social services can't just magic uo.places ..

This is such a common situation and you have my sympathy.

Do you really find that the government throws money at this problem? I don’t know, maybe they do, but like you say, something isn’t working.

I think part of the problem with providing respite care is that it is all done through agencies or private contracts. It needs to be made into an actual job, with training, support and a regular guaranteed wage. I see a lot of respite jobs advertised and even though the hourly rate it good, there is so much more that needs to be done to make caring in general and respite care a much more attractive career.

@QuertyGirl but like another poster said they haven't got a magical place to send disabled kids to that they keep for these situations.now after Covid the situation is worse than ever,all previous carers,some have never returned to work.