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.

Can you use an agency for carers?
I know when I was discussing direct payments with my sons ,disability social worker ,he said many parents use an agency as they will be DBS,checked and it's just easier in many ways than finding your own carer

Sorry S 20 voluntary care. See

frg.org.uk/get-help-and-advice/what/children-in-the-care-system-under-voluntary-arrangements-section-20/what-happens-to-a-parent-or-carers-parental-responsibility-when-a-child-is-looked-after-under-a-voluntary-arrangement/

Parents simply delegate parental responsibility to SS for where the child lives. They don’t lose all parental responsibility - LAs only get that under a court order. Parents do need to watch what the LA is doing though, or else the LA starts assuming more rights, I believe?

Most disabled children in residential social care have section 20 placements. The child has looked after status ( giving the LA particular responsibilities) but parents retain full parental responsibility and can remove the child and end the section 20 at any time. Many children go for visits home regularly.

The problem is that these placements are becoming harder to get due to problems in recruiting staff. The wait can be a long time and many children end up hundreds of miles away from home.

My own experience is that for children with complex needs, social care would rather do a section 20 placement than provide proper trained support in the home.
They provide nothing ( or minimal unusable funding for a DP worker) and then when the parents say they cannot cope, say that the parents can ask for a section 20 placement if they really think they cannot look after their child.
The right to a family life apparently doesn't exist for disabled children.

Unfortunately the only answer is independent specialist boarding school. My ds had weekly boarding from 15 - it saved our life.

I’m so sorry but I pressed the wrong vote button. You are DEFINITELY not being unreasonable.
If respite care isn’t given the impact on those having to struggle on results in more care being required later, often due to burn out or MH issues. The system is currently just pushing difficult issues to ‘dealt with later’ pile rather than addressing them now. It’s concerning how this will end for many families.

No sleep, day 14,son is kicking the walls and laughing manically,theres no reasoning with him, hes mentally severely disabled, he doesn't understand, ive been in his room 15 x to restrain him so far as he bangs his head too once in a rhythm.God i hope a Government official,MP ,journalists ,someone is reading this thread and takes pity and kick-starts a change.Im going to turn into another statistic,i dont want that!i want help, i want to live!

I am so sorry to read this .As a fellow m with a similar child my feelings are the same and a few months ago I was almost suicidal too and still battling with my mental health.
The 30 hours a year is unbelievable .What are you meant to do with that .We have 8 hours a week and it's hard finding a PA so I advertise at local universities near us and I was successful getting one and then some students too who work in care homes too are I intersted and that's how I get a little break .
Can you ask for another reassement and you need to have more during the half term and holdiays as he's home all through .
I hope something can be done but it all boils down to money with this government .
Have you tried sleep medication for him .We use melatonin so he sleeps a bit at night

No @Throwncrumbs young people don’t wanted to go into careers that are chronically underpaid, the workload is unmanageable, they are routinely abused by the public and the responsibility of the role stops them sleeping at night ( nursing, teaching, social work, caregiver). I worked as a carer and then became a registered nurse ( since left). I would strongly discourage my DC to undertake a caring role, the impacts it has on your physical and mental health is undesirable.
I completely feel for @That80sgirl the sad reality is that her situation is because we can’t get carers because as a society we don’t value and won’t appropriately pay for work traditionally done by women and families are then left at breaking point

My son sleeps in a safe space and so although he still wakes and is noisy, we don't have to constantly go into him. Ours is self funded but some people get them through OT or through charities. They also turn up quite a lot on selling sites although admittedly they are still pricey.

The whole system needs a massive reform. On the news recently it was reported a private care home received £250k per child! If the LA has that sort of money to throw around how about giving it to the parents. You could be in complete control of employing carers (on a very generous salary) and therapists, plus it would replace lost earnings, allow home adaptations, holidays, clubs, whatever you needed. Instead it’s being given to private equity firms with zero experience in care to make a profit and the service they provide is completely inadequate/abusive.

"If the LA has that sort of money to throw around how about giving it to the parents"

The LA would rather fund the care home than fund a child to live at home. This is because it is easier for the LA, it limits the amount they spend because they know a lot of parents won't consider residential accommodation until they are absolutely desperate, it limits the amount they spend because there are a finite amount of places, there is the underlying assumption that parents of disabled children are incapable and LA don't see children ( or adults) with complex needs as people but as problems to be sorted.

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.

Twenty-odd years ago, this was what happened with my friend's son. He was already at a residential school Mon-Fri, as there was no local school that could meet his needs. After a couple of incidents when he injured his mother while he was home at weekends, with the support of a local charity that supports carers and following the intervention of the MP, children's services funded a weekend placement at the same school. He has remained in a residential setting ever since.

Now, the finances of local government have got so bad that I doubt if even that would succeed. The budget for carer's support has been cut massively and need has increased. Childrens' services are struggling to meet their statutory duties and are effectively firefighting.

I'd still try and put the pressure on the council, OP. Start with a complaint, and enlist the support of your local councillors, ring Carer's UK for advice, get your MP on board (make them earn their £84k salary).

Have you got a friend or family member who could support you with this? You need someone who can advocate for you.

How old is he?
.melatonin never worked with my son ,but after he started ( special ) school.his sleep did improve ,I know there are other meds they can try as I have several friends with disabled children .

The threshold for higher rate DLA is needing care at night. If he doesn't sleep and is violent, he needs care at night and should qualify.

If this has got worse since his last award, you could report it as a change of circumstances and ask for the award to be reviewed.

He's an adult, different rules apply for adult social care from children's.

There seems to be a lot more provision for adults with LDs than for children.

The care system is struggling because of a lack of qualified staff. I read Abi Morgan's , This is not a Pity Memoir'. She is the writer who wrote the BBC drama, The Split, to fund her husband's care after he was in hospital for two years in a coma and was left brain damaged. She was assured that the NHS would fund care. After experiencing a man who turned up as a career with not training and who jacked it in after one day, she asked her agent to find her some well paid gigs. She wrote the Split whilst she was undergoing treatment for Stage 3 breast cancer. She is a wonderful person . I admire her so much. By writing the Split and other dramas she was able to pay for properly qualified care for her brain damaged partner.
The trouble is no one wants to be a carer. Poor pay and hard work frighten away a lot of people. A friend of mine who is a carer told me that the best carers are older women who are kind and hard working. How many young people would want the job? I agree with the poster who said carers need proper training and improved pay. However, I just can't see younger people opting for this kind of work.
I am still reeling from the thread where a poster complained that she found it hard to care for her toddler whilst working full time from home. Where are future carers, teachers, nurses, nursery nurses coming from when employers offer cosy work from home, care for your kids at the same time work?

And they are hugely expensive.

I have a friend who, after bringing up 2 children with high needs and then working in a residential setting, started providing respite care for parents via an agency. She got approached by so many parents that she now looks after one young adult, for 24 hours pw. Her hourly rate is £25 and she's always getting asked if she can take on another client. She could work 24/7 if she wanted.

This is because it is easier for the LA, it limits the amount they spend because they know a lot of parents won't consider residential accommodation until they are absolutely desperate, it limits the amount they spend because there are a finite amount of places, there is the underlying assumption that parents of disabled children are incapable and LA don't see children ( or adults) with complex needs as people but as problems to be sorted.

This.

The care system is struggling because of a lack of qualified staff.

And the reason there's a lack of staff is because it's difficult, challenging and demanding work and poorly paid.

Why would anyone do it when they could get more money doing a much easier job in retail without any qualifications or experience? Care homes for older people are now recruiting from overseas, because they can't get staff. A friend in dementia care could get more money working on the checkout in Aldi than she does working with challenging, vulnerable old people.

The organisation I work for provides supported accommodation for adults with LDs. They're so desperate for staff that if an existing employee introduces a new employee who stays in the job for a year, they get £1k "introduction bonus".

"This is so hard to read. How do people like KP get government funded full time care for her disabled son?"

Harvey is an adult and at residential college so different type of funding. Also any parent of an adult can say I'm not having them at home and the LA have to provide care elsewhere although granted it may be shit.

OP, I suggest you discuss DS’ situation with a firm of solicitors, with a franchise for legal aid in community care law. I assume DS has no assets nor income except his benefits? If he doesn’t, then the legal aid is for him, not you, although you would act as his friend in litigation. You have nothing to lose; but they may be able to help you. Try

www.irwinmitchell.com/personal/protecting-your-rights/social-healthcare-law/community-care

calesolicitors.com/community-care/

www.simpsonmillar.co.uk/public-law-and-human-rights/community-care-and-childrens-rights-judicial-reviews/

Or, just do a search on Google for solicitors in community care law with a franchise for legal aid.