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Desperate actions with social services

(39 Posts)
StiffyByng Tue 15-Jan-13 14:00:42

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.

Tootsandblanket Sun 03-Feb-13 08:25:16

Well done. I've been thinking about you and your family and was so happy to read a positive update. Good luck with the move and please keep us updated.

vjg13 Sun 03-Feb-13 07:45:11

Well done! What an amazing achievement. I bet it is very hard to take in. Will update with how you all get on? I hope she settles in well and quickly. smile

MareeyaDolores Sat 02-Feb-13 21:39:17

Delighted to hear common sense has prevailed. Hope everything keeps moving super-quickly.

bigbluebus Sat 02-Feb-13 18:19:50

Glad to hear that things have moved forward Stiffy. Hope your DSD gets to her residential placement very soon and your family get to have your lives back.

StiffyByng Sat 02-Feb-13 17:55:34

It couldn't, as she has a trust fund, so not eligible for legal aid. The trust paid though, thank goodness. (We have no control at all over the trust, and the trustees are not particularly helpful normally, but our solicitor explained that the sole reason that she wasn't eligible for legal aid was the existence of the trust and that therefore they couldn't really refuse this one.)

Veritate Sat 02-Feb-13 17:53:26

Stiffy, your solicitor's work shouldn't be "bloody expensive" - surely it could be done on legal aid in dsd's name?

StiffyByng Sat 02-Feb-13 17:19:02

Just wanted to update you all on where we are. It's been a hell of a week.

Last Thursday an emergency panel meeting was convened on DSD for Monday. Last Friday DSD created such a problem getting on school transport that her headteacher contacted the council. The following Monday our social worker came to observe DSD getting into school transport, and the council carried out a risk assessment in the afternoon. As the assessor observed violence from DSD, as we'd told them was happening, school transport was immediately withdrawn unless we'd agree to restraining her with a harness. A psychologist had said this would lead to additional distress for her so we refused.

The following day, she went to her hospice for the rest of the week as agreed in the panel meeting and the negotiations with the council started. We refused outright to transport her to and from school or stay home with her, and our employer confirmed to them that either of these would be incompatible with our remaining employed. The council started trying to find an emergency residential place for her with no luck. By Wednesday, the council would still not confirm in writing that they would be providing care next week, when she returned from the hospice. We had already retained a pretty hardline solicitor and he sent them a (bloody expensive) letter warning them we were about to go to judicial review on their provision of continuing care. Our councillor spoke to the Director of Social Services. On Thursday we visited the residential school we felt most suitable and thought it would be great for her. On Friday our solicitor got confirmation that they would be providing 135 hours of care for her from Monday, and our councillor got confirmation that a 52 week residential placement would be funded ASAP.

We are still reeling that we have achieved what we were expecting to fail at. We were braced for lengthy, lengthy fighting. I think the fact that DSD is very seriously ill has helped - our solicitor said that they wouldn't want to go anywhere near a judge. There is also serious concern about her siblings. We now need to get her into residential as soon as possible as being at home with carers is going to make her mental state worse. She is also refusing to have anything to do with any carer other than her regular one, being abusive to the others, which is quite horrible. Hopefully the school will take her. They said they had never before being approached by a local authority about a child rather than a parent, so if they assess her as suitable for admission, I hope things can move fast.

Thanks for the advice on here. We were desperate and now there is some light at the end of the tunnel.

MareeyaDolores Wed 23-Jan-13 23:57:06

Your local councillor might bang some official heads together. Theyre often quite helpful in making things happen. Or they might be be best friends with the head honchos for children's services.

StiffyByng Wed 23-Jan-13 14:38:27

OwlLady, I'm so sorry you and your child are going through this. It is so very unfair.

Thanks for the other advice. It's appreciated.

School transport issues are threatening to degenerate to the point where we will be unable to get her to school. There is no option at that point that would allow either of us to continue working if that happened. Our local authority would provide two hours of home tuition a day and we would be ineligible for any other care during school hours. We have spoken to a residential school which feels that DSD would be best served there, and our social worker, who we have finally managed to speak to, told us off the record that he thinks it would be the best thing for all of us. We have told him that if we don't have a residential place, we will ask for her to be taken into care.

We have also taken legal advice. We are clearly in for a big battle but we are going to have to fight it. We have found that we are entitled to attend panel - surprisingly that had never been mentioned and in fact we have struggled to find out what date it is being held - and we are hoping to take our solicitor with us too.

mariammama Thu 17-Jan-13 17:13:07

Stiffy, if you would be prepared to briefly leave home, a case conference would simply tell you (or DH& dsd) do do that, rather than register the baby.

Which would mean you aren't 'voluntarily homeless' and unless you have a spare house, the council then have to put half the household in temporary accommodation/B&B...

OwlLady Thu 17-Jan-13 16:55:20

this is exactly what happened with me stiffybang

on communications to third parties within the council he was describing my daughter as extremely able (she is in nappies at 13 fgs) and it wasn't possible atm for her to go into the community on her own but they were working towards it. She has SLD and moderate - sev physical disabilities, challenging behaviour, severe epilepsy

it has taken me ages to get anywhere. He shouldn't be even doing his job and your social worker sounds the same

anyway I am sorry to go off on one, it just makes me so angry. They are happy for my children to have an abnormal childhood because they cannot leave the house, it absolutely beggars belief

StiffyByng Thu 17-Jan-13 16:19:10

One of our councillors complained today on our behalf to the head of commissioning. He has demanded a proper reassessment before the next panel and a meeting with a senior manager. Our MP is also talking to them today. Our attempts to communicate with our social worker, even to ask who his manager is, were being met with complete silence.

OwlLady Thu 17-Jan-13 14:55:41

I know it's stressful but have you made a complaint?

IMe you get nowhere until you progress it to stage 2. We are having similar issues atm, my SW was USELESS though and part of the outcome is that we have been given a different senior SW for a total reassessment of needs

StiffyByng Thu 17-Jan-13 11:40:43

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.

mariammama Wed 16-Jan-13 20:09:18

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

mariammama Wed 16-Jan-13 20:08:15

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 sad. 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.

porridgeLover Wed 16-Jan-13 18:32:51

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

Veritate Wed 16-Jan-13 17:19:46

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

StiffyByng Wed 16-Jan-13 09:58:15

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.

JsOtherHalf Tue 15-Jan-13 22:54:49

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

Delalakis Tue 15-Jan-13 20:24:39

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.

porridgelover Tue 15-Jan-13 18:46:09

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.

mariammama Tue 15-Jan-13 17:18:17

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.

mariammama Tue 15-Jan-13 17:12:37

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

bigbluebus Tue 15-Jan-13 15:18:26

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!!

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