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I have a severely disabled child and social services have cut my care package to NOTHING, is this happening to anyone else

(31 Posts)
RogerMelly Wed 14-Sep-11 14:59:58

(wrote a massive post and it appears to have disappeared! blush

I have a 12 yo with SLD, autism, severe physical disabilities, challenging behaviour, chronic epilepsy. I have no family closeby to help even with my nt children (2 others) My husband works long hours and I have had to give up my job to care in the last 12 months because my child condition is deteriorating. We received a very small care package of 5 hours care of a saturday (daytime with a carer) and a few evenings after school (2hours at a time) so i could work or if I was not working those shifts I could spend time with my other children. I am at my absolute wits end. I had n respite for the almost 2 months of the summer holidays and my husband had to take three weeks annual leave to help me so now he has no holiday left. I have to go to my gp for medication as I am so anxious.

I just wondered if this is happening to anyone else? sad

cansu Wed 14-Sep-11 15:41:24

Last time soc care attempted to reduce my ds care package, I telephonjed the councillor in charge of young people's services at home (their numbers will be on the council website) I also e mailed my local councillor asking for her help. A meeting was held and I ended up with an increase of an hour. Write letters to your MP, and to your councillor. It really was worth it in my case. My social worker actually told me it was getting the councillor involved that changed my situation.

Lougle Wed 14-Sep-11 16:26:26

So sorry sad

No, I have just been awarded 4 hours per week for DD1. She is 5.9, has a brain malformation, some physical disability, MLD, epilepsy.

RogerMelly Wed 14-Sep-11 17:19:47

I have been categorically told by my social worker that 'other families like yours are now coping without any help'

Sevenfold Wed 14-Sep-11 17:21:26

they always say that, or tell you there is no money in the budget.
ask to talk to the head social worker and start dropping residential care into the conversation(I know that isn't what you want, but that costs loads)

r3dh3d Wed 14-Sep-11 17:32:17

Well, afaik it's illegal to reduce a package; once you've been assessed as needing support, the council have to provide it and absolutely cannot use budget as a reason not to. They can - and do - use budget as a reason not to grant services to children who are new to them, but not generally to reduce care to children they are already supporting. They would either have to get your agreement that your child's needs have reduced, or they would have to prove that the original assessment which awarded you this package (and which they and you signed) was incorrect.

Have you asked them, in writing, for an explanation, in writing? Something along the lines of: "further to our meeting of x date, I thought I should put our conversation in writing to make sure I have understood before I take this further. I believe that you agreed that my son's needs have remained the same, and that his original package was appropriate to his needs, but told me that despite this, you are reducing his package. I would be grateful if you could respond in writing, explaining in detail the grounds on which his assessed and agreed package has been reduced."

Don't know if others concur, but that's my take on it.

rebl Wed 14-Sep-11 17:32:51

We were assessed (don't get anything) and in the report that the social worker wrote it clearly states that ds is extremely challenging and has no danger awareness and can't be left unattended for a meal to be prepared and that the family are in need of assistance. We got nothing.

RogerMelly Wed 14-Sep-11 17:34:28

I have unfortunately moved house and I am under a different council, they hav reassessed. I put this in my original post but it ate it! they have told me they have no legal obligation to carry over the care ppackage but even so i believe they have a legal one

RogerMelly Wed 14-Sep-11 17:36:24

argh i believe they have a moral one. She has come home from school and is smashing up the kitchen so please don't be hmm at my haphazard posting!

I have put it into an email. The iA they have done though suggests at panel that I need to go ona parenting course!!! I am degree educated for fucks sake, I do not need to go ona parenting course

RogerMelly Wed 14-Sep-11 17:37:52

I have the eligibility criteria table that the SW gave me and I believe we are needs band B, maybe even A but definitely will be A because I can't bloody cope

rebl Wed 14-Sep-11 17:39:26

The parenting course hmm. Like that is the answer to all our prayers. I went on one, waste of time other than to tick the box that I've now done it.

RogerMelly Wed 14-Sep-11 17:40:16

He even suggested that I drop her off at a special needs youth club which is for any child with an SEN sad and the man who ran the youth club categorically said they would not take her because her needs are too extreme/complex and they cannot deal with her toileting needs (she is doubly incontinent) So that helps hmm

RogerMelly Wed 14-Sep-11 17:41:12

Do they suggest these parenting courses to everyone?

I am going to have to go now, please don't think i have disappeared!smile i will be back when she is in bed or at school tomorrow. I appreciate all the help/support

anonandlikeit Wed 14-Sep-11 18:06:46

Just to check, was it a carers assessment carried out on you or an assessment of your child's needs.
If there has been a change in your health you can request a new carers assessment and provide supporting eveidence form your gp.. sorry if you ahve already tried this angle!

BakeliteBelle Wed 14-Sep-11 18:16:36

Sorry but you seem to have been treated disgracefully.
I don't know the legalities, but we have always though that a possible reduction in our care package is just one reason we feel we can never move. However, I thought the rules had changed and you could now transfer care packages over from one LA to another. I have no idea where I got that from - just a vague memory.

Totally agree about the threat of residential care. After all, if you get inadequate help, this is quite possibly where your child might be heading. You need enough help to prevent going under. Ignore, ignore, ignore the stories of other families. They are attempting bullying, guilt-tripping tactics to make you give up.

RogerMelly Thu 15-Sep-11 08:40:53

It was an initial assessment that they have carried out, not a carers assessment but within this now initial assessment they have written in that I need 1 hour a week as a carers break, so i don't know if they are trying to get round it by saying, actually we have suggested a carers break. This is for our second panel hearing btw, the first did not come to anything (well apart from i was encouraged to seek support off the voluntary sectorshock) so I suggested if it didn't go back to panel then I was going to push for overnight respite - something I don't actually want but I know it is more expensive for them to provide. I was trotted out with the 'your child is not severely autistic enough for overnight respite' as if being autistic is the only criteria!! FFS.

Can I have a bit of advice though about the changing of authority, if her needs have not changed and actually deteriorated, then is is legally binding that my initial care package was okay for our needs? even if it was done by another social worker in a different authority (I was under them for 7 yrs btw, so not 'new' to them) They have not even contacted her professionals in this area though and are trying to push through a care package without any input from her physio, salt, ot, teacher, continence nurse, gp, paed, etc etc. I would have thought at 12yo and with previous child in need meeting and team around the child meetings that this would have been a 'natural' port of call in the circumstances.

BakeliteBelle, tbh moving has had its benefits in other ways as the health authority here are MILES better and have picked up so many missed problems (like leg discrepancy and scoliosis) which if they had not have been picked she would have deteriorated quite dramatically, whereas it has -hopefully- been caught in time to prevent surgery for at least a while. The school (sld/pmld) is also MILES better and smaller and so much on the ball compared to the one she moved from, so we have had positives aswell as the negatives.

unpa1dcar3r Thu 15-Sep-11 17:59:10

I have been categorically told by my social worker that 'other families like yours are now coping without any help'

And?
Why is this relevent? It isn't.
They are there as they have a 'duty of care' and are not fulfilling this by making you feel like a failure, it is unethical in the least to suggest that other families cope ok. Familys all cope differently, some cope brilliantly while another family, same situation, may not for various reasons. It's irrelevent.

They are actually breaking the law by reducing a care package unless circumstances with the child have improved (e.g he has got better).
They cannot do it unless this is the case and it sounds like they've done this on spec and without giving you a review of your carers assessment and your childs assessment of need anyway.
I would counteract their decision by demanding more help than 5 hrs per week, that's crazy, not nearly enough.
Do you have an SEN solicitor near you (google Mencap for a list of local ones specialising in SN) or failing that go to your CAB if they have anyone who can help with disability (here ours have been given funding specifically for disability issues with children)

r3dh3d Thu 15-Sep-11 18:45:19

I'd agree go to CAB. I'm not sure it's binding if you move LA - Education is, but Social Care is different.

ime of Social Care in a RUBBISH LA, the way panel works is they make the social worker jump through hoops before anything is awarded. So they will suggest you go on a parenting course - this is not necessarily blaming your parenting, it's more a hope that even though you are a good parent, you will still pick up something on the course that gives you another lever on the problem behaviour and so may reduce the need for respite. They will point you to the voluntary sector because a % of parents request funding because they are unaware of the alternatives or because they think their child is too severe to access it when in fact they can. So you have (where I am) to apply for charity help, and be kicked back, before your sw can take your request for funding to panel. The things they are saying to you all sound very familiar.

The fact the youth club kicked you back can play into your hands: you can now go back to them and ask for support to access the club, based on the club's agreement that she can only attend with 1:1 and she needs funding for this. It may ring another bell with them as it is as much about the child's right to access the community as it is about you getting respite. My SW has suggested we try accessing something similar (which we are quite wary of for a number of reasons) as a way of getting funding which could be set against the whole package - and, reading between the lines, once a child has that funding, it can't be withdrawn by this LEA but maybe can be changed to be more useful. So if they give you 3 hours' 1:1 for the youth club and the youth club try it for a term but still can't cope, you can use the 1:1 funding for something else.

Where your Social Care are missing a trick is in not talking to Health. There is an increasing push from SC to see respite for disabled kids - if they are sufficiently disabled - as actually nursing care. So I'd call the social worker and talk to them about that - ie that your child has health needs and they should get the picture from health, particularly with the new assessments, and see if there is any joint funding available. I'm not saying there will be, but it will make them read the Health reports and possibly take your child's needs more seriously.

anonandlikeit Thu 15-Sep-11 20:12:11

I would write to the SW manager, requesting a copy of the policy with the grading assessment criterea and how they have made that judgement about your dd, so a full break down of what needs they have assessed.
You can explain that given the needs your previous LA felt she had & the deterioation in her condition/ability you would like to fully understand how they reached their decision before taking further advice.
Insist they provide full results of assessment for you to scrutinise.
If they ahve nothing much on papaer to back up their decision then they really should start again & provide a full assessment. You are legally entitled to it.

The argument that other families don't get a care package is totally irrelevant as you know, after all' they would not accept the argument from you that you know people who DO receive a good care package.

anonandlikeit Thu 15-Sep-11 20:15:21

We accessed funding throught he governments short breaks intiative, basically they awarded ds a personal budget for him to access clubs etc.
We then chose how we used it which basically involved them giving us the name of the approved care agencies & we contacted them to book the carers... In our case it was crap & didn't work, didn't really suit ds but as r3dh3d says there is often more than one way in to access funding.

Agnesdipesto Thu 15-Sep-11 20:30:57

You can find info here with a list of solicitors at the bottom. Look at the link to 'cementing to the floor' as well.

Also this

I don't know much about social care but there must be an independent right of review / appeal / complaint or judicial review???

AlysWho Thu 15-Sep-11 20:36:06

Every Disabled Child Matters have a campaign here

Peachy Thu 15-Sep-11 20:38:00

We have four boys- DS1, ASD, gets HR care and attends autism base; ds2- mildish stuff, adhd but no dx- ds3 mod-severe verbal autism, SNU base; ds4 is assessment for autism.

We are getting sod all. We have been told to expect sod all and that they will never help with ds3 when he is an adult.

We did get a taxi to summer club (in our city every child gets a palce, not an Sn thing) as they can't be together (ds1, ds3) for one boy as I could not be in two aplces at once which was handy I know but on day one my friend was there crying as she is a single mum with no car and they took her taxi to give to us. So i feel like a shit now and probably will not use for ds1 next eyar (also, he was unsupervised and punched a 7 year old).

I had something of a breakdown a few weeks back and am still v shaky (due to ds4's assessment being underway / him starting nursery / ds1 startinga sd unit) and Dh has MH issues- still nada; they said we will get some if we hurt the boys. Not a chance.

However if we lose our house (rented, always a possibility, fiddly incomes mean local LLs would not even allow us to apply despite 7 eyars excellent etnancy- to do with insurance) and have to go into emergency accom they will take ds1 and ds3 into foster care whilst we are there. So I am trying to drop off their radar as we will know in 3 weeks if we have renewal- or not.

Peachy Thu 15-Sep-11 20:42:19

Voluntary sector HATE this

used to work in a related sector (parenting charity) and we were always getting 'SSD abandonment' cases; drove us under financially in the end. here they give you an NAS package and walk away (SSD) but ds1 has been on befriending list for eyars, we had 6 weeks from a student who then returned home and nothing since. There just is not anything else; ATM Mum will take the boys for a few hours once a month but I don't think we can afford the petrol after next summer (income will drop, and Mum can't drive/ lives in England)

Peachy Thu 15-Sep-11 20:45:38

Your child is autistic?

I can't offer miracles or maybe anything but if there is anything I can help with in terms of moral support / etc just holler- in final year of autism MA and always willing to at least try.

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