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 get direct payments for my son and employ a PA . Is this a possibility!?

@Spikeyball yes exactly!any sort of post of the struggles ive ever done is always met with put him in a residential school/home as if theres a sea of them waiting with open arms🙃

@boboshmobo he needs 2:1 care, i cant even find one never mind 2 privately myself!

Yes those posts infuriate me they are are always so flippant ,not only are there a very few available ,but it's not a decision most parent,s would make lightly .

For all the money councils spend on social care, carers are hugely undervalued and underpaid. £10.50 an hour where I am. You can get £14 an hour as a mobile carer but then you need to use your own vehicle and that costs loads. You can be paid for time or mileage but not both.

My DH worked as a carer and its hard work and low paid. Most carers are like him and take on the easier jobs. Much easier to take someone with learning disabilities out shopping and help them prepare a meal than care for someone with complex needs.
The pay needs to increase.

But the worst part is that charities who support children with complex needs have had funding cuts and many clubs that used to run in my city have closed. These are relatively cheap to provide, staff are not well paid and also use volunteers. But no one wants to fund them.

In the public discourse about invisible disabilities and SEN, the needs of children with complex disabilities has been totally sidelined.

You are absolutely right. I was reading earlier today about the elderly having to wait weeks in hospital when they are not ill but it is not safe for them to go home due to lack of anything approaching adequate and safe social care. That is expensive in itself and of course leads directly to all the problems we have with hospitals being unable to find beds for incoming patients.

Brexit certainly has a lot to do with the problem, but clearly we need to incentivise the right people to become care workers by paying enough and offering reasonable working conditions. It needs a massive revamp of thinking about the economic structure of care provision.

It definitely feels like Broken Britain, im ashamed of being British, a country run by a ludicrously well paid Goverment which cares so little about its people, especially the most vulnerable.little has changed over the years,they say their platitudes ,make their promises, win their votes and then serve the excuses

Totally!

They yap on about growth and Brexit benefits and I can't see the point of any of it if we can't provide care for the most vulnerable

@x2boys @Nimbostratus100 I was replying specifically to OP saying
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 he'd end up in a care home

a care home might not be something to be scared of (possibly might have been during the pandemic)

My fruend has been awarded one night a week respite for her son, but 3 years on it hasnt happened. Then the main charity that provide after school, weekend and holiday respite in our area announced they were cutting services as the LA cant afford to fund people attending. At the other end my uncle is carer for my aunt. All he wants is a weeks holiday each year and someone to come and do lunch one day a week, but the social care system seems set up for all or

@Thehop Drs used to leave newborn babies with complex disabilities to die because there was zero support and they knew the care required would destroy the family. But the welfare state was supposed to change that.
When I was young the state ran wards in cottage hospitals that were for respite. They do not exist any more. The cottage hospitals themselves were all closed and the respite care left to the private sector - who do not want to touch it.

WTF???
most families want some respite not a dead a child you do realise most parents yes even parents of disabled children very much love their children??
disgusting comment .

Of course parents love their children and want to do their best for them.
But the state is failing. It puts heroic efforts to save the lives of children with complex disabilities, but does nothing to support them being able to live a good life with their family.

So what do you suggest we do where it isn't apparent untill.a child fails to meet developmental milestones that there are disabilities ,or if a child becomes disabled through an accident or illness ,just abandon them?

People are suggesting that the state properly supports these childrens care.

"But the state is failing. It puts heroic efforts to save the lives of children with complex disabilities, but does nothing to support them being able to live a good life with their family"

So rather than the state sort itself out, you suggest we kill disabled people off. Euthanasia when severe disability presents itself.

Please dont derail and get thread deleted due to unsavoury comments, this is to highlight the failings which dont get discussed regarding society's most vulnerable. Its a much needed discussion which needs shouting out

Push the social worker to provide more support, both in terms of hours/nights and with finding a provider/carers. Yes, there’s a crisis in care, but there is more they can do and, sadly, those who fight for support get more.

We struggled to find a provider for DS1 after 3 failed providers in 18 months. We pushed for more support and children’s services provided foster carers for respite instead and funded them at a much higher rate. They don’t do it often because of the demand for foster carers, but they can do it.

You/they could also look at whether DS qualifies for continuing care funding if his needs are complex.

They could also support a placement at a school with a waking day curriculum or residential school. No it’s not simple, but it is possible. Even without their support you could appeal for this. Sounds like an early review of the EHCP is needed regardless of the placement anyway.

Complete a change of circumstances for DLA. You don’t need mobility problems for high rate care.

How do you derive that conclusion from the post you have quoted? Surely it is saying that yes, the state needs to sort itself out?

A disgusting deleted post by someone else overlapped with this one was the cause of the confusion. I can see now what this poster meant.

Somebody was saying we should get respite for DS - but from what I know, there's no chance that we'd meet any threshold for that. And even if we did, what's available?

I've been asking for help with violent meltdowns for a year and we've only just had an assessment with social services, and so far all that's happened is they've asked if they can refer us to what is essentially a signposting service I've already been in touch with on multiple occasions. Hopefully something else will come out of it, but I'm exhausted, DS will only go to sleep with me there, if he wakes in the night I have to go in and settle him, bedtime can take four hours and I just want to cry, but I have to work as well.

I've said our situation is unsustainable, but...

@That80sgirl does he go to a sen school? That where I found mine . There are websites too . Also the local authority has a way to help you find carers through the charity independent lives .