Divorce - disabled child- Advice please?

I’ve done it. For 18 years. And I didn’t get paid a bean. I am an adopter twice over.

The system is broken though ,yes there absolutely should be more support than there is but when the resources are not there than what ?
We were at crisis point a few months we have bern promised all sorts and the wheels are in motion but nothing has actually materialised yet
I do get respite so it's a lot more than a lot of people but its never enough.

I’m not sure. I have two very complex and disabled children, both of whom have attachment disorders. In some respects, they often respond to people who don’t know them as their PDA/controlling behaviours are usually reserved for me and anyone else who is close to them. I think every case should be judged on its merits and every child should be treated as an individual. It’s simply not good enough for one-dimensional thinking to be the prevailing trope in social care. My elder daughter is a blind child. Among other disabilities and complexities. I can’t tell you how many social workers and professionals have tried to tell me how to do things differently for her based on their experiences of a very elderly person with glaucoma or macular degeneration. Neither of which my daughter has, even though she is blind and still a child.

Our LA always tries to encourage carers to progress to level 4 (once they have suitable experience) They rarely do. For many, it just doesn't fit with their family life - commitments to their own children, grandchildren. It isn't just about money. Would you do it?

As a SW with experience in this area I don’t blame you at all OP. I don’t blame individual social workers trying to make an impossible situation workable either but that isn’t your problem.
You sound like you have the resources to get the system to help you and you should use them.
Your dd deserves a childhood and you deserve support.

@2x4greenbrick I hope that post wasn't intended at me. My use of the term bullying was in response to many posters suggesting that the OP just needs to be more assertive with social services, as it implies that shes not doing enough and just needs to raise her voice or 'man up' to make it happen. Its often a type of comment made about interactions with social services or the courts from people who know nothing about how the systems work and like to believe that if they were in that situation they would just 'tell them' and it would happen. I certainly don't get the impression that the OP was a weak advocate for her child as some have implied.

@ThePieceHall do you think getting an agency to send random carers in (they're always random , agencies never guarantee the same regular carers in my experience) - would work well with a severely autistic child?

I've just told my dp about this thread. We've both worked with those 18+ who are in residential care and are on 2/3/4:1. We just wanted to say that your position is totally understandable. Only those who have no idea how challenging these children and adults can be would think you unreasonable. Your poor dd too. My heart goes out to you

This
You need specialist advice op
It is clearly very dificult
Of course ss would prefer you take it all on but you have options
Speak to specialist lawyers

Someone will be along soon saying LAs can’t do that because there is a shortage of carers. Yes, there is a shortage of carers, but the LA/ICB can do more than shrug their shoulders and say nothing we can do. Funding carers at a higher rate, sometimes a significantly higher rate, &/or at a higher ratio, attracts staff. When forced, LAs find they can find staff. Sadly, LAs often don't do that until forced to do so because it costs more.

Advocating for your child and enforcing your child’s rights aren’t the same as bullying people.

Using language such as bullying plays into the hands of those portraying parents as ‘sharp elbowed’ and ‘demanding’ ‘golden ticket EHCPs’ and other such nonsense around that rhetoric when all parents want is for the LA to comply with the law. That is not bullying.

Yes, understood. In a case like you are suggesting, the LA should then fund private agency carers to come to the family home during waking hours and then other carers to come during the night. It’s simply not good enough to say to broken parents that because the precise provision does not exist locally, then there can be no provision. As someone extremely experienced with dealings with children’s social care over 20 years, there is not much lateral thinking.

Just in response to those suggesting the OP strong arm the social worker, it isn't just about funding but simply what exists. There may be some residentials that take disabled children this young, but they are few and far between. There are none in my local area, or in the neighbouring counties, at least for permanent homes. They were all closed down in the years when mainstream education and care in the community was the direction from previous governments. This means as well as the difficulties getting funding, it also means waiting a long long time for places to be available, and children potentially living hundreds of miles from their family. There are very few places that I know of that take this age group, they tend to be the specialist residential schools and the youngest child I've known to be placed was 7yrs old.
Foster carers for a child with these needs would usually need to be level 4 trained, experienced, and carers who are home a lot (ie not out working) and without other young children in the home. That's also rare. And the foster carers that I do know who care for children like this are often extremely committed - but that means they don't have spaces. An extreme example but I know of one foster couple who took on a child with extremely complex physical needs, ASD and LD, and cared for him for twenty two years.

I'm not saying this to dissuade the OP, or to argue that it's right, but it isn't as simple as just bullying a manager behind a desk somewhere into signing a piece of paper.

There’s legislation going through the Scottish parliament which, if successful, will severely limit the profit that can be made by private providers of residential childcare. The Scottish association of social work and Social Work Scotland have campaigned in support of this for a long time now, and for consistent rates of pay for foster carers.

When writing to MPs please point to what’s happening north of the border - it can be done if there’s a political will. I’d be very interested to know how many ministers and MPs have a financial interest in private care providers.

I'm so sorry for what you are going through OP. 💐 There definitely are residential special schools for autistic children aged 5+, here's an example. https://www.cambiangroup.com/ga-residential-s/

for crying out loud read the bloody OP and their subsequent posts. She shouldn’t my have to go through this all again.

There are 7y/o’s in residential placements, including ones where it has been ordered by SENDIST. Obviously not all cases meet the threshold for that, but there isn’t a blanket rule preventing residential placements being Ordered until older.

oh I couldn't agree more. The profiteering by private companies is a national disgrace .

I should have said, my solicitor told me when DD1 was seven, that the tribunal wouldn’t order a residential school placement at that age - but then, there was no school in the county to meet her needs. He and our barrister told us to accept the compromise of an additional resourced unit, for the time being in the Juniors. My fears about that came true, but the medical condition, the real clincher, only appeared at age 12 and steadily got worse. By the time she was 17, we were stressed out.

I was trying to illustrate though, that SS can give you whatever you want; and in your position OP, I would have pushed for residential care, regardless of DS’s age. The impact of the trauma on the sibling can also be far reaching.

Yes, I hear you. And you are seen. The absolute disgrace is the private sector profiting on human misery. The private equity funds, the care homes owned by Dubai and Qatari-backed funds. I really wish that posters - and the social workers among them - could direct their energies to focusing on the amorality of this rather than gaslighting extremely vulnerable parents. If anyone feels strongly enough, please would you contact Josh MacAlister, the recently-appointed Children’s Minister?

ha ha. I am one of those Foster carers and have a v challenging young man. We are as rare as hens teeth. I have over 20 yrs experience and only know of one other carer and she needed 2 full time carers on top of her full time care to manage her v aggressive child.
We have had to fight tooth and nail to get any respite and believe me we know all about the toll it takes on families. We hang in there because we love our young man despite the challenges which are many.
Oh and we are not rolling in it . We have saved the local authority millions over the last 20 yrs but we are not paid exorbitant amounts at all. What we are currently paid per day would fund about 2 hours of care by a carer from a care agency. !

We asked the LA to take DD1, as a teenager into care under S 20, because I was on the verge of carer breakdown. It wasn’t due to her behaviour, but the stress of the medical needs - which affected her sister too. They refused.

We did it through the SEND tribunal. We won a 52 week placement in a specialist residential school, where the medical needs could mainly be met onsite. The cost was 6 figures pa, and that has carried on in adulthood - but it was at the point where specialist care was cheaper, than the cost to the NHS anyway. When DD1 was at home in the holidays, we got about 54 carer hours a week and that was what we wanted. A carer from 10 am - 6 pm every day Monday to Friday, and two carers when I had appointments, and half a day respite for me and DH at weekends. DH didn’t want strangers in the house at night. No respite centre could cope with DD1’s medical condition. I was told students at her school, who lived in its own LA were getting 70 carer hours a week.

The cost is not your problem OP, and don’t let yourself be distracted by emotional blackmail over it by SS or anyone else. Ime, the needs of some children are beyond the resources of most families, and nobody can criticise you OP, unless they have walked a mile in your shoes.

I will say though, I have no idea what the cost of DD2’s mental health problems are to society, as a result of what happened to DD1, but they must be high.

The cost of where DD1 is now, is still 6 figures for 1:1 care all her waking hours, but there are people there with 2:1 or 3:1 or 4:1 care. The cost must go up accordingly.

What an awfully sad situation.

Personally I would focus on the impact on the children - both the safety of your daughter and unmet need (and therefore safety) of your son. Professionals give far less of a shit about parents, and their wellbeing.

I wouldn’t however leave a child at school to be collected by SS, the level of trauma involved in that decision just does not sit comfortably with me.

And my heart goes out to you OP. Being in a situation like this is so incredibly hard and often hidden from society.

Getting residential care seems to be the best option as it looks as though you will be left with the responsibility otherwise. And as your DS will inevitably become stronger, you being the main carer is physically not safe or sustainable. Even if the STBXH did commit 50 50 of the care, it isn’t a solution and likely to break down anyway.

You need to push back at every barrier the LA gives. Residential care can be anywhere in the country, so even if there are no local places this isn’t an excuse for them. Build up evidence of need, so go to your GP to talk about how physical injury and mental impact of care is affecting you. Getting someone (school or a family member) to call MASH about the danger you and DS are in from physical harm might get things moving? Sadly it’s only when you get to critical stage that LA’s will step up as otherwise they mark you down as coping. And nobody is going to arrest you for abandoning your DS at a safe place, there would be nothing to gain by it, and they would still have to provide care, but for two children instead of one.