Here some suggested organisations that offer expert advice on SN.
Social Services - what do they offer?(23 Posts)
We're the parents of three children - two year old twins, one of who has been verbally dx'ed by paed as having "classic autism with associated learning disability".
I'm in the middle of a huge battle with Social Services, about what they should offer and when they should offer it. The "Family Support Worker" who visited, admitted that for children of DS's age they offered next to no services.
I have some really clear ideas about what we as a family would find helpful. However, I'm not sure that my expectations are reasonable, common, feasible - and it's also clear that what's available varies massively depending on where you are.
So... my question, could we have a quick rundown, where are you and what services do you get from S.S.?
Our respite is sorted out by Social Services. They are responsible for direct payments too if you choose this route for respite/care/help
I'll have to check the status of the meeting/assessment that we had - not sure. Rest assured, after the 6 weeks wait for her to bother to get back to us, there were a few factual inaccuracies...
Regardless... "Short Breaks" - what do people mean by this - I was speaking to our Portage person, who's brilliant, she also works for Barnardo's and told me to get in touch with them about short breaks - I've somewhat stupidly, associated a "short break", with a weekend away - you know, a lastminute.com type short break - but I get the impression that's not what's meant?!?
And would respite be considered the same thing - are either regular, or one-off type things.
PP. You also claim for both care and help? Our "Family (un)support(ive) worker" seems keen to steer me away from this whenever I mention it - but I understand I have a right to it?
Have you considered applying for Disability Living Allownace for child and Carer's Allowance for yourself?
We won't get carer's allowance. We're in the process of applying for DLA - although, interestingly, our S.W. told us we wouldn't get it because DS is two...
I'd really like to know what other people get from S.S. - if anything - other than grief...
Hi Jemmm, your SW is talking b*lo*s, you can claim DLA from (i think) 3 months.
If your child needs significantly more care than another child (without disability) of a similar age then you should be entitled.
In your case you can quote a direct comparison to his twin.
Have you ahd any support from homeestart, I know it varies from area to area but locally they provide fantastic support for families with pre school children with SN.
Another parent I know has one afternoon a week from teh homestart person who plays with her child with sn allowing her to spend time with her other children.
It may help you out until SS get their act together for you.
OK, Jemmm - well legally, as I understand it you have next to no rights. The law covering what SS have to provide is vague - it basically says they have to follow govt guidelines, and govt guidelines are written to read well to politicos, not to stand up in a court of law. To force them to provide you have to take them to court with a good lawyer. And unless you get legal aid that is very very expensive. My common-sense understanding is that a disabled child has no assets so should qualify for legal aid - but SS will carefully define the assessment as being respite for you not care for the child (who doesn't need care - because you are their 24/7 carer, right?) so worm their way out of that one.
Getting your "entitlement" is thus a matter of knowing your local system and how to work it, combined with being the squeaky wheel. But you are right it is a postcode lottery and it is very common for services to be allocated based on budget not need, and often not even on need. First, it seems with ASD that because it is so common, if fair provision was made for all, Social Services would be bankrupt. So it's harder to get services for ASD because they can't afford to set the precedent. Also (at least where we live) the easiest way to control budget is to provide only when the family themselves has collapsed. If you get no services, your marriage breaks up, you end up addicted to prescription meds, can't pay the mortgage etc. etc. then they step in with a full care package - where putting in half as much support at an earlier stage would save £££ in the long term. If (as in our case) elderly relatives spend their pension funds providing the care that Social Services should be paying for - well that's their stupid fault, if they're dumb enough to do that SS will leave them - and you - hanging out to dry.
SO - to actually answer your question.
We were initially assessed by SS as needing 50 hours per week, plus a weekend link family. We get 8 hours per week DPs (which is paid erratically and withdrawn from time to time) plus in theory 16 hours Dom Care on weekends, though in practice we get about 4 useful hours a month from them for one reason or another.
We don't get Short Breaks funds btw. When we ask about it our SW mysteriously goes long term sick, and Duty doesn't seem able to handle it.
Short breaks means respite. It's the new term. We got to the family meltdown phase, so DS2, age 15, (ASD, SLD, suspected bi-polar disorder) now in shared care, comes home 2 days a week. Family now almost normal, but I wouldn't wish what we went through upon anyone.
Is there an Early Bird course in your area?
Jemmm, we have a 24 hour respite every 4 weeks when dd1 goes to a family's house and they look after her (they work in our borough as foster carers, and love dd. We are so happy that she goes to them as dd absolutely loves them and loves being there).
We also get direct payments to hire a carer/1 to 1 at After School Club each week. We have been quite lucky - but I have been very stroppy and vocal
Agree your person is talking bollocks re the DLA. If you can prove your dc needs significant additional care you are entitles. I think we had it from about 12 months old, when dd just had the diagnosis of hydrocephalus and global delay. WE now get the highest rate of both, as dd has a range of diagnoses. We don't get carers allowance, as I work part time.
oh damn - wrote really long reply and did not work . Anyways, am disability social worker and wnat to support parents BUT bloody difficult and wish that I did not have managers to say no/budgetary constraints. Any way we not all bad.. honest!Some of us do WANT to support famalies.
What do we get from SS?
Nothing. I don't think I have the emotional energy to start the process.
Respite would be lovely but I would want someone to take all of the children to give me a proper break, not just my disabled child and that ain't gonna happen!
SS provide us with respite care 2 nights per 4 weeks, with every third one on a weekend. (However the foster carer is retiring and we don't have a follow-up yet - aaagh!)
Also Direct payments 4 hours per week, carer is flexible and can come and muck in or babysit while we scarper!
Also access to summer playshemes with Transport (very important!).
also can find special childminders for you.
Sidge - why don't you try for Direct Payments?
Also home adaptations as needed.
....BUT you probably won't get anything until you are verging on a nervous breakdown.
Yeah, we thought the DLA thing was bollocks - which is why we went ahead and applied.
Looked at homestart when we first had our verbal dx - and for some reason, decided it wasn't what we needed - will have another look though!
Earlybird - yes I'm, currently trying to round up enough people to get the next course going in our area.
I've already started with the "stroppy and vocal" - the social worker hates me already - frankly, I'm not at all concerned about this. I've maintained a fairly calm voice at all times, whilst firing off some rather erm, "assertive" emails... If that's what it takes to get where we need to be then so be it.
This is what get's me - we had a copy of the assessment this morning - on top of a few glaring ommisions - she's classed DS who has a dx of autism, as not being a "child in need" under the Children's Act... Eh?!
I've had a look - there's a section about if services aren't provided then it would have a "significant impact upon his development" - so is this going to be about semantics? It's bound to have an impact, therefore we need to define "significant"?
The next section has an additional definition of "the child is disabled" - answer... you guessed it "no" - how's that?!
hamsterlover Hi! Am I allowed to speak to you - I fear instant banishment to the outer reaches of MN for consorting with the enemy... I think we all know you're not all bad - actually /whispers DP works in social work... I'm sure it must be very frustrating wanting to make a difference and having obstacles in your way. Any thoughts on the above defintions? And any thoughts on additional services that people are entitled to?
My DP works in complaints... irony - oh yes - anyway, the bottom line with most of this should be that you don't need to get to breakdown position to get what you need, you just need to be able to shout, loud, to the right people. Again, there's a huge element of "unfariness" about this - a lot of the people most in need are probably those, least able to do the shouting.
Anyway, bottom line - you have a right to complain, S.S. have a statutory complaints procedure that they must follow. If you're not happy - write to them and copy it into anyone you think relevant, local MP, councillor, chief exec., relevant managers all being top of the list.
I think this is what's truly frustrating as a group - we know what we think we should receive in terms of support, we know other people get it, and we know that the main reason we have to fight is because people are protecting budgets - and it's wrong, wrong, wrong.
This post has turned mammoth and ranty... sorry!
meltedmarsbars yes I really should investigate Direct Payments. Are there strict criteria as to how it is to be used? I would love to pay someone to watch the girls for a couple of hours here and there so I could have some time just for me, but I assumed that the money would have to be used solely to care for the disabled child.
Sidge - tell the social worker what they want to hear, which is that the dp's will be used to care for the disabled child, and then once set up just arrange yourself with the carer (who is someone that you employ) to look after both dd's. The system is crap so play the system...
Jemm - your son has a disability and is therefore automatically a 'child in need'. This is stated very clearly in section 17 of the children act.
hamsterlover - one other thing - how does that change things... do have we have additional rights?
Thanks again - I knew you were ok .
As he is classed as a child in need then he is entitled to an assessment - which you have had. The assessment should inform whether he/you as a family are eligible for services and what those services are. Just had a thought that she may not have wanted to class as child in need as if she does then she may have to start the child in need process, which would mean a multi agency meeting to discuss his/your needs as a family and a multi agency response to address those needs(e.g who is going to do what). Anyway its daft as he had the assessment because he was a child in need. Hope that helps
Sorry to drop in at the end of this one but just thought you may be interested to know...
We eventually were given 8hrs per month "Sitting Service" and it's brilliant & just what we needed. A sitter comes to our home and looks after my DS (ASD) and any sibs too. If I need to take DS to an appointment that states no sibs, then the sitter and comes along too and minds the sibs there for me.
I understand that not all areas offer this service but it's really worth asking for just to see if you can get it.
Other than that, we get absolutely no other support.
Hamsterlover: where I live ss are re-defining their terminology so only physically disabled (or is that "impaired" - see other thread) children are still being classified as disabled - and a lot of parents are missing out on help. To me this sounds like a cost-cutting exercise.
Sidge - each area defines its own Direct Payment system, here I can use the helper to our mutual satisfaction once she comes - sometimes she even washes up while I eat my dinner while its hot!! You need to tell SS when and how you need the help, and they can tell you what they can offer. Some people get a laundry service, others a sitter, others a carer to take a child swimming, etc.
meltedmarsbars - I'm not sure that's something they can do - the terms "child in need" and "disabled" are defined by law, in the Disability Discrimination Act and the Childrens Act.
The Disability Discrimination Act (1995) defines a person as having a disability if he has a physical or mental impairment which has substantial and long-term adverse effect on his ability to carry out normal day to day activities.
The Children Act 1989 also includes a definition: section 17 states that a child is disabled if he [or she] is blind, deaf or dumb or suffers from mental disorder of any kind, or is substantially and permanently handicapped by illness, injury or congenital or other such disability as may be prescribed.
The National Service Framework for Children, Young People and Maternity Services, which was launched in September 2004, includes a standard on disabled children. The standards main themes are: services should promote social inclusion; increased access to services, co-ordinated around the needs of the child and family; earlier identification through integrated diagnosis and assessment; better early intervention and support for parents of disabled children; robust systems to safeguard disabled children from abuse; multi-agency transition planning for disabled young people entering adulthood; and palliative care for those who need it.
Sorry if that's all a bit dry... I found a document produced by Camden Council - basically aimed at all of the different organisations "speaking the same language" - it's mgot some useful definitions in - www.camden.gov.uk/ccm/cms-service/stream/asset/?asset_id=632174
Who thinks my Social Worker is in for a treat in Wednesdays meeting .
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