Does anyone hav Any advice about how to get out of this cleft stick (agencies passing the buck)?

[NoHaudinMaWheest]

Background: Ds 15 has AS and very severe OCD. Two years ago he was in a really bad place - not coping with everyday activities (washing, toileting, sleeping, eating even with massive input from me), hadn't been to school or out of the house for months, kept wanting to die and trying to kill himself by holding his breath or putting his hands round his neck.
Eventually we got a referral to OCD specialist clinic at the Maudsley and he spent 8months there as an inpatient.

He improved vastly and has now be home for just over a year. School is going really well and he is mostly alright at home but his rituals around toileting and washing have been increasing a lot and can now be 7/8 hours at night. All the proffs involved agree that this needs to be dealt with before he goes right back to where he was. They also largely agree (as do I) that another Maudsley admission is the best way forward. Maudsley have said they won't take him as an emergency, it has to be a planned admission which means that we have to get on with it before it becomes an emergency.

They have also said that they will not take him until there is an adequate after care package in place locally. (We live 100s of miles from London so ongoing care from the Maudsley isn't really feasible).
Input from local psychologist isn'st really a problem we already have a good one on board. However he really needs help in putting CBT stuff into practice on a daily basis. I do my best but it is difficult as I do not have any emotional distance. It is also exhausting as I am doing it on my own since Dh can't/won't get involved, I am chronically sleep-deprived and I also have ME.
The ideal would be to get support workers in the home a few nights a week to help DS to maintain progress and to give me some respite. This provision should be jointly funded by Camhs and SS.
However SS say they can't set anything up until they know when he is leaving the Maudsley and how well he is then. They also think he might need a residential unit here, but can't tell me what it would look like. I can sort of see SS's point but the Maudsley won't take him until something is in place. Meanwhile we struggle on and although some things are up and down, overall DS continues to deteriorate.

Sorry for the long post but any advice on how to move things forward most gratefully received.

Don't spend your time seeing their point, a council's internal procedures and limited resources really aren't something a mother should take responsibility for. They can plan for and authorise funding for the best estimate care package now, and either cut or add to it later. Maybe your local councillor can knock some heads together? Otherwise they'll be funding a lot more later.

And you'll probably need to look at direct payments and finding some individuals you can train up, as a typical LA-arranged agency contract carer is unlikely to have the skills your dc needs.

Looks like you need the home care now, anyway, but just maybe someone with a budget hopes it will all go away or, if worse, that an emergency foster care placement might do (and avoid that expensive maudsley admission and massive after care package). Worth calling the NAS helpline now, maybe, sometimes things turn nasty when fobbing you off stops working.

As your DS has already been an inpatient at Maudsley for the same issues as present. Can they not write you a letter expressing the importance of an aftercare package?

Maybe then you can take it to SS as you then have something official in your hands. Not to get immediate package done but to perhaps then persuade the SS to write to the Maudsley saying that they are prepared to organise a full package once your DS is released from hospital again provided they are given appropriate notice in advance of his then up to date condition prior to him leaving?

In other words play one against the other. Neither one saying they are taking him or giving him but making it clear to SS that a package is going to be needed iyswim

sorry x posted had to see to ds

Thanks for the replies all. I need to have a definite plan in place before the next TAC meeting on 24th April so that we don't have another going round in circles meeting. I know I am finding it difficult to be clear headed because I feel so bad that I am letting DS down, by not being able to manage at home and because he has deteriorated so much since being home. I also know that DS doesn't want to go back to the Maudsley because he loves school and doesn't want to miss any. Of course he will miss a lot because of tiredness if we don't get on top of the problem.

Maria I think I do need direct payments and to get someone trained up. The agencies SS use have only come up with one person (since May last year) and psychologist and I agreed she was unsuitable. Any ideas on how to go about recruiting such a person?