Desperate actions with social services

[StiffyByng]

I hope I don't get flamed for this-we are pretty desperate and need some advice from people who understand.

My DSD has mitochondrial disease which is degenerative and life limiting. Part of her variant is dementia and over the past three months this has progressed to the point that it is all-consuming. Family life with our other children is impossible. We have no support other than a carer we receive direct payments for, for a few hours a week. Both her special school and respite hospice are finding her difficult to manage, are having to limit staff time with her and use constant 1:1 care when they have her.

In order to cope with her at home we need full time one to one care, and two to one at certain times. We need to supervise her constantly, particularly around her toddler sister, and she quickly develops psychotic rages. Social services have increased our hours but by nowhere near enough. At a large TAC meeting yesterday, which our social worker attended, it was obvious that all the professionals involved in her care support our bid. Some have already contacted social services directly; others were angry in the meeting at what we are being expected to do. We are also having another baby in three months. After the meeting, three different people approached us and told us we should take direct action to achieve what we need, in the form of leaving her at the social services office. They were all professionals. We are very reluctant to do this owing to the effect that it would have on her, which we would have to deal with, but has anyone on here done anything similar that has worked? We have already said we are close to the point of asking for residential care full time, which was also supported by people at the meeting. We would like not to do that if we possibly could because of her life limiting illness.

[bjkmummy]

It is shocking that you are in the position. I have sat in the council offices before and refused to leave until they sorted out my respite which they did pretty sharpish. Your situation is much more desperate. What decisions were made at the meeting yesterday. What about your mp or your councillor? Have used my mp in the past and he was really helpful and did a letter there and then as we sat with him.

[MummytoMog]

Oh love no advice, but a big hug xx

[frizzcat]

What a truly horrendous situation for you and I've no idea in what you could do. In terms of leaving your dsd at ss office - wouldn't that leave you open to a child abandonment charge? I realise that the other professionals are angry and frustrated but I'm not sure this advice is helpful and so negative for you.
I think you probably need to look at your residential options and start the battle, have you taken legal advice?

[StiffyByng]

No legal advice yet, although the school want us to speak to one of their parents who is a lawyer. I have no idea how to investigate residential options. When we moved her to a special school the LA offered us no assistance at all, and we spent days calling round schools just to find out what sort of children they took. I feel completely daunted at how I would go about that on a national basis!

We really don't want to leave her, although if we did, I don't think we'd get charged. I think leaving her with social services is legally acceptable. We are very, very unlikely to do it though.

The TAC meeting was about her all-round care so no real decisions made. The social services panel meets again in February, but as it will have all the same evidence as the last one, I am very far from confident it will make a different decision. Clearly others at the meeting had the same thought.

[StiffyByng]

Meant to say, I think our MP is definitely worth a shot. She has sorted something else out for us personally. Our councillors have been quite crap, although I think that's also down to how our LA is run.

[frizzcat]

Sounds good - hit the MP and take the free legal advice. No one what's their dc to go to a residential and I don't know how to go about searching for one - but I think it's worth a look if you dont get anywhere with legal or MP, as your dsd and you are not currently getting the support you need. The frustration of the professionals is quite telling - really hope you get somewhere

[bjkmummy]

If you are going to consider residential then social services will need to be on board as they will pay part of the school fees. Residential placement is not something I know an awful lot about so it is good if you can get some legal advice. It maybe that you need to call a review of the statement and say her needs have changed so much that residential is needed. You need to consider where you can get written evidence from to support this ie doctor etc and start to slowly gather your evidence as the more evidence you have hopefully if that is what you do decide it can move along quickly.

[StiffyByng]

The statement is already under review on the request of her school and the SEN manager from the LA was at the meeting. I'm under no illusions that it would be easy to achieve. Moving her out of mainstream was hard enough. Her current school are of the view that once it becomes too hard to get her to and from school (she frequently refuses school transport in the mornings already and we can't take her ourselves as it takes two people to get her anywhere in a car - one to drive and one to restrain - and we both have jobs) that residential would be her only option. We saw the panic her mainstream school caused when they refused to have her back after the summer so can only assume that her current school would need to be the ones making noises in our behalf.

But we really want to get adequate support in place for her here. The SEN manager was talking about adding carer hours to our package to accompany her on school transport but that seems very unjoined-up with the fact that we're unable to get enough basis hours at the moment.

[frizzcat]

Did they talk about added home care hours?

[bigbluebus]

I really feel for you OP. We are currently pushing Social Care/Health to get the help we need for DD since she went from Childrens to Adult services last October - but our situation is nothing like yours.
Last time we were faced with tackling the system, we wrote to the Director of Social Care, gave him an ultimatum ie this is what we want and you have 2 weeks from the date of this letter to sort it, or we go to the local newspaper. Not surprisingly, everything was sorted and rubber stamped very quickly. We didn't want to go to the papers really, but it was a case of running out of options as we too had been advised to 'threaten' the 'powers that be' by the frustrated employees in the system.
Incidentally, the instruction for our 'public service' respite carers that we had when in childrens services was - in the event that the parent does not return home,and is not contactable or returns in an unfit state to take care of the child - the duty Social Worker should be called. So I don't think you would be in trouble if you had to push the boundaries.
So if your local MP is good, contact them ours is useless unfortunately. Send a letter outlining what you want and give them a dealine to provide it and tell them what the consequences will be for failing to meet the deadline ie go to press, start legal action etc.
Have a look at the website of Luke Clements, //www.lukeclements.com who is a lawyer who specialises in Social Care and Carers rights. I have heard him speak and he is very good, and doesn't mince his words. He has various publications on his website (under Resources) which you may find useful, and help you ascertain your legal position without the need to pay a lawyer, at least for now!

[bigbluebus]

and incidentally, according to Luke Clements, 'panels' are just an internal process used by LAs, often as a means to delay decision making. They have no legal standing! So if you are told they cannot make a decision until the next panel meeting - they are wrong!

[StiffyByng]

That's really interesting, bigbluebus, thank you. And I'm grateful for your experience too.

No mention of additional home care hours, which is what we are desperate for. It's all about the commissioners at the panel. Good to know the full picture on the panel-we were already questioning that as our social worker, having told us in writing that the panel had agreed a small increase in hours recently (before we hit crisis point) claimed in the meeting yesterday that that increase was in fact his manager's decision to help us out temporarily during the crisis. We obviously have written proof that he wasn't telling the truth, but panel/manager are obviously more flexible than they want to admit.

[Tootsandblanket]

You poor thing. This is a desperate situation.
In the past my DD's care package has been reviewed, it's 80/20 health and social funded, and was under consideration to be cut significantly. I felt powerless as I was the main carer at home, I too was advised to take her to the offices. Thiswas not an option, so I took to the telephone and email! I rang and emailed the most relevant people for our case once a day, and wrote letters, requesting receipts and setting dates for minutes of meetings and copies of all reports to be sent to me. I did not enjoy my harassment phase, it made me feel pretty rubbish, but it worked.
Can I make a suggestion? Think about what you would ideally like. Be specific. How many hours. For what activity. How it would benefit your DD, you, and your family. Why it needs to be 1:1. I found by writing this down I could be very clear and definite with people.
I agree with the advice given above, threaten to go to the papers, contact your MP.
Do you have the support of a local hospice? Ours has a brilliant family services officer who helps with issues like this.
It's a tough time for you all. Good luck. X

[bigbluebus]

Had a similar experience with a Social Care Panel here Stiffy. Was told that our case was going to Panel on xx xx date. I rang the Social Worker after that date to find out the decision only to be told that the Head of Service was on leave, so was not at that panel meeting. The case had been returned to the head of service for a decision on her return from holiday!!!
There is a section on that website I referred to about panels!!

[mariammama]

The traditional method for similar situations with elderly people is to bring them to hospital with their next illness, insist you can't/ won't care for them adequately at home, and (if necessary) threaten to sue the staff member trying to send them home instead of admitting. Then keep blocking discharge. It works

[mariammama]

Getting admitted to hospital yourself is the next most obvious option. Leaving at school or respite might work. Be careful of this if they might outwit you to get her back home without decent and 100% guaranteed long term arrangements. The school or respite place might be withdrawn in revenge as they cannot cope with any chance of you doing it again.

[porridgelover]

Stiffy, I have no experience or advice to offer but it feels wrong to pass by without commenting on the awful (but totally typical position) you've been put in.
Would her Paedx have any weight in your fight? I would have found that as 'head' of the multi-disciplinary team, a letter from the Paedx often carried more weight than the other profs involved.
I also think the threat of media involvement is one to consider as it's something they try to avoid. Best wishes.

[Delalakis]

Re the residential school, I suggest you phone SOS SEN. They could give you some advice about potential schools, how to go about choosing them, and how to go about applying for the council to finance the place.

On the social services issue, have you had a core assessment, and have they done a care plan? I'd suggest you go to a lawyer that does legal aid and specialises in community care (and maybe also education), because it may well be that you can take action on legal aid in DSD's name.

[JsOtherHalf]

I would investigate if your DD would meet continuing care criteria. If she does then the health service could pay for additional hours? www.nhs.uk/CarersDirect/guide/practicalsupport/Pages/continuing-care-children.aspx

[StiffyByng]

Thank you, all.

Our email to our social worker has met with a one line response - 'I am passing your email to my service manager'. Ho hum. I am drafting an email to our MP today.

We have support from every side - our hospice, our medical teams, her schools - although as we have never seen what sort of thing is put forward to panel, and all those people have contacted social services off their own bats rather than being consulted, we have no way of knowing how much of their input goes into the meeting. Neither the social worker nor the continuing care nurse have met DSD. A year ago our last social worker did what I think is the care assessment mentioned above, but we've seen nothing like it since. After reading this, I am going to ask to see what they will be proposing to panel, in writing.

DSD is eligible for continuing care. We were receiving 15 hours social care a week, which had been put up (by panel, regardless of what the social worker now says) to 25 hours in December to reflect DSD's deteriorating condition. Our LA doesn't have a continuing care nurse at the moment so no one could assess her for that, but our social worker managed to find one in a neighbouring LA who did one just before Christmas without meeting DSD. The panel has given us 25 hours continuing care, which is what we asked for, but the social services have taken the opportunity to remove 10 hours, leaving us with 40 hours a week, ten short of the minimum we asked for. They are claiming the 25 hours was only a short term measure agreed by a manager not the panel because we were in crisis over Christmas, ignoring the fact that the 25 hours had been awarded before any of it started.

40 hours a week means that our weekends are unmanageable. We will be more or less OK during the week, although DSD is waking very early at the moment so we are on the go for about two hours before her carer arrives which is pretty exhausting. But we will have no chance at all of any sort of weekends, which will mean our other kids will spend every weekend stuck in the house while the two of us cope with their sister, and we get absolutely no time 'off'. This morning the carer phoned in sick, and it meant DSD went into meltdown, the other kids were late for school/nursery and I was late for work. That's how much we need 1:1 the whole time.

[Veritate]

Do get legal advice, Stiffy. I suspect a couple of strong letters from a decent solicitor would make them start being more sensible.

[porridgeLover]

Yes as veritate says. A note from a solicitor might start a fire?

[mariammama]

HV can refer under "section 47" (child protection) for a safeguarding meeting to assess the risk of serious harm to BabyByng from the situation. Asking her to do this for your imminent newborn isnt likely to backfire, and having to look at the situation from a vulnerable infant's position might focus their minds. Unborn baby case conferences are very common, and one of the few occasions when everyone agrees its better to be wise before the event.

No-one cares about you (adults) and theres also very limited consideration for the welfare of disabled children who are past the big-eyed, cute stage of life . Siblings of school age have some rights to assistance, rhough theyre usually ignored. But council workers saying 'no more care hours' really don't want their names in the paper for failing to stop a baby's fatal head injury.

[mariammama]

Being on the at risk register for neglect would help you enormously

[StiffyByng]

That's an interesting idea but scares me. Once things are more settled, I want to apply for midwifery, and I'm not sure having had a child on the at risk register would be a good thing for me. I think we are more likely to threaten that I will leave, and take the other kids with me.

We saw the continuing care nurse yesterday, who is taking our case back to panel. She is doing a reassessment and is aiming to find the points to push DSD into the next bracket of care. Apparently we are currently on the very bottom of the scale of hours that she qualifies for, which makes me very cross, and her approach is to bump her into the next scale, so even if they go for the very bottom again, we will have more hours. We are waiting to see how this works. We also have two councillors speaking to the Director of Social Services on our behalf. If the panel comes up with nothing, and it's in two weeks, then we'll throw everything at them, including a lawyer's letter.

Meanwhile, we are on the verge of school refusal. DSD uses a taxi with chaperone, and we have to carry her into it most mornings, struggling. She then screams all the way to school and assaults the chaperone. The school can't use force with her to get her back in at the end of the day, and tonight she is going from there to her hospice rather than home, as my husband is away for work. We all know the first time she successfully resists and I have to drive her will be the last time she ever gets into the taxi at the end of the school day. The school have told us (they are very good) that we must categorically not start driving her as the LA will then tell us we have to carry on, and it would make it impossible for us to work. (It's a two hour round trip.) So we warned the continuing care nurse that if this happens, the LA will have to find care for her all day every day until we can resolve it one way or the other. I have no confidence though that they will, in which case I can't see what on earth we will do.