How about THIS for blatant discrimination???!

[ShinyHappyStarOfBethlehem]

I need your help to advise me on how to fight this! And fight it I will.. I am bubbling over with outrage here!

We have been waiting for a while for DS's case to go back to the respite panel at social services in order to get provision for over-night respite again. I say again because we were granted overnight home-based respite with his daycare respite carer (who has him twice a month for 6 hours at at a time) but he didn't sleep for her either and she had to say she couldn't continue to have him overnight. A Child In Need meeting was held (about this and other matters) as it was decided that we definitely need some degree of overnight respite as we are SO sleep deprived (7 years worth!!) and so it would be best provided at a Centre. For this, it would have to go back to panel.

Today, after a 2 month wait, it went back to panel. Our social worker has just phoned with the decision...

It was dismissed! We can't have overnight respite because he's in a mainstream school!!!!

Now the fact that he may not be in a mainstream school longterm is striking me as TOTALLY irrelevent! The inclusion policy states.. (I know it does! I just can't find it online.. can anyone else?) that parents of SN children (and the children themselves where relevent) have the RIGHT to choose where their children are educated. (Dependent on availability of provision, lack of detriment to child and his potatential peers etc etc.. I can't remember the exact wording but I KNOW that's what the gist is! I wrote part of my EXAM on it!) HOW can they say we are NOT ALLOWED to have overnight respite on the basis of where he goes to school?

That's the same as saying he's "not disabled enough". Who drew a line? Where is the yardstick? He is actually considerably disabled, (gets higher rate DLA, mobility AND personal care; needs constant 1-1 attention) but attends a m/s school with flagship inclusion status and despite probably being the most disabled child there, has been coping fine with constant 1-1 support (although the plan is to gradually integrate him into special ed as he gets further towards Y6.. he is Y3 at the moment - until he is actually IN a special school ready for Y7.)

I am not going to swallow this.. for the good of us OR anyone else in this position in the future!

How can they be allowed to make this decison on this basis? You can't have the inclusion policy on the one hand.. and then be making discrimatory decisions based on the "parents rights to choose which education" on the other!

Please give me input! And help! And WHERE online is the wording of the inclusion policy document?

Little bump? I am bouncing up and down here.. I need someone to tell me this stinks!!

It does, doesn't it? We are struggling like hell.. but if they thought for a second they might have to take him into care because he was at risk, they'd be throwing services at us by the dozen to save themselves money!!

All we were asking for was maybe 1 night a month when we could get some zzzzzzz and they say no on the basis that he is in a mainstream school????!!!!!

Well I'll come back later and hope someone shares my outrage. I know it's a bit specific.. sorry..

good grief. dd has severe quad cerebral palsy and seizures but we plan on mainstream. I hope this doesn't affect our respite cos its not like she will suddeny be less disabled cos of where she is at school!
Thats total madness.

Someone on here was refused respite because her child was in special school- so perhaps its just an excuse that is used.

How well do they understand your ds' problems? I have to admit that our requests for respite were completely ignored (when ds1 was in msaintream) until ds1 entered SLD/PMLD school when suddenly they were handing us lots of DP hours (they couldn't actually provide something). The school he goes to is for the children with the biggest disabilities in the area & although he hadn't changed when he switched schools it was as if he suddenly featured on their radar. Before then I think they thought he was just a bit harder than any old mainstream kid.

I share your outrage, yes. We have had something different-but-similar, ie diff circumstances but very obviously Social Care are not meeting their legal obligations.

I don't know what to do about it in law, alas.

From what I understand, Social care law is different to educational law. Yes, the educational statementing process is a shambles and SEN law routinely flouted by LEAs. But there is an appeal process and the whole thing is defined in pretty clear-cut legal terms because it is covered by specific statutes, so if you read up you have a good chance. You may need to fork out for legal support at tribunal but because it's a bounded process costs are contained and organisations like IPSEA may help you for free.

Social Care law is covered not by statute but by government guidelines which are political and vague and hard to pin down. There is no tribunal or appeal process; if you don't get what you are entitled to, you have to take them to Appeal (ie a fairly high level court) for which you need serious lawyers at your own cost (££££££) - unless you are eligable for legal aid. And I've not found anyone who will support through that process or with the costs. Which means that effectively Social Care have no accountability.

If you are eligable for legal aid, CAT me. I have been given the name of a lawyer in this area (if we were eligable, we'd have taken Surrey to the cleaners a long time ago.)

I do not know but I think the respite care probably has its very own set of rules and that means they can pretty much do what you like. A friend of mine was refused it even when telling them she's suicidal through lack of sleep, on the grounds that her kids and house are well kept! It's like you can't win - if you try and keep head above water, you're judged to be coping. You are quite right I'm sure that "being in mainstream" shouldn't be a reason - sounds like they are coming up with any old crap, and next time it would be because he has an "a" in his name! I don't know to say Shiny - I have ABA tutors who do babysitting if you are in the Surrey area, and they are very good with SEN kids but they do charge. I also had a lovely respite carer for my DS about a year ago, and think she does private work. But it's all money, I know!

I don't know the law, but the decision stinks. I can however give you some clues on how to cause a stink about it.

Councillors:
Local councillors are often underused and their role often not understood. If you and fiofio can get together and attend the councillors local surgery (details should be on the council website or you can get them from the library) and go to them with this. Explain you have both been denied respite for opposite reasons and ask what the guidelines are.

Your councillor can go a lot higher then you and cannot be fobbed off.

MP
An obvious one, but with the two of you saying you were denied for completely opposite reasons there is a lot more they could do.

Local Forums.
These can be very powerful tools. Local public service providers must consult stakeholders. Often forums are set up for this purpose and gives the opportunity for local residents to ask questions and the forum can demand answers from the top people. They are also a good medium for getting changes in how things are done. Appropriate forums would include Carers Forum and the Disability Forum. Again you should be able to find these through your council website, local library or your local councillor.

The chances are you will find regular members who know exactly how to deal with this sort of issue. Forums can meet for a couple of hours in the evening, from every month to every 6 to 8 weeks. You should be able to claim back travelling costs as well as childcare costs, though it is always worth getting in touch with the forum first to find how to do this.

I would always encourage parents with SEN children to consider getting involved with local forums if they can find the time, you can make so much difference. As well as learning who the best people are locally to help you get things done. Currently I regularly attend our local area forum (planning), housing forum, SNT Ward panel (community police) and housing scrutiny meetings. Though I am also Chair to our tenant management organisation.

One of the issues I am trying to tackle at the moment is the number of play areas being put up in our borough but there is practically no provision for disabled children, especially those in wheelchairs. The equipment is out there and it doesn't stop other children from using them.

I share your outrage- surely it is current policy to educate all in mainstream! In fact it is usually a lot harder for the parents to do this since most parents of sn dc have to prop-up the support for their dcs at ms. Dont know if this helps but I looked up the eligibility criteria for respite yesturday in our zone. For the highest catagory, (the only one likely to get respite here) there has to very serious risk of harm to the child or siblings (in that order) and last of all the carers! Perhaps you need to make a case based on this prioritisation.

Thanks all.

Firstly, Fio I have just rung your DD's school, because by the time I got home from school run with my DD, our SENCO has rung and told DH to get DS put on St. N's waiting list as this might help matters. (I have been talking to her recently about maybe doing the change-over faster than the orignal plan anyway.) However, the person I spoke to on the phone laughed at me and said "with the greatest respect, your SENCO has got the wrong information, we don't HAVE any kind of waiting list, it isn't done like that, and we have been turning children away for some time. I can offer you an appointment to discuss this if you ring back in the new year..". To which I agreed.

Have left message for our SENCO to say what happened.

I knew St N's if full (from you and others)but I didn't know there wasn't a waiting list. Doesn't sound very hopeful does it?

The thing is, I may want him to go to St. N's soon.. but I DON'T want it to be because of this discrimination issue!

On that basis R3dh3d, yes we would be eligible for legal I assume as we live on disability benefits (due to DH's disabilty). I would very much like to FORCE social services to be accountable for this decision! They cannot have it both ways.. it isn't fair!

dGeorge, I am seeing Fio tommorow as she says so can discuss with her about possibility of taking any joint action.

Thank you for the input everyone.

It is outrageous, sometimes they just chance their arm & quote reasons without a shred of any real policy or legality behind it.

What criteria has the panel used to assess your ds against?
Ask to see it & for a full written explanation as to why your ds does not fulfill that criteria?

Once you understand their decision making you should be in a better position to fight it.

I do think they sometimes use m/s schooling as a judgement of a child's ability & it is so unfair.

Good luck.x

SW said she asked about criteria.. and was told that the fact that he was in mainstream was IT.. no further explanation needed!

I feel it's a great shame that parents (who feel able) are not allowed to attend these panel meetings. With or without representatives... They might have found it hard to dismuss DS as "not disabled enough" too if they could meet him!

I keep seeing roles for myself for when I've got my degree.. they get away with SO much! They are supposed to be supporting us. Instead, everything has to be a huge battle when life is so hard in the first place!

I think the boys being at M/S school is onew reason we have beenr efused access to disability support- that and apparently () my intelligence and competence as a parent (yep they can get all that from one effing meeting!)

They don't combine the effects of 2 disabled kids, and they don't offer carers assessments unless you're on their books- ie f off. We have been offered a few mainstreams ervices (childminder? for DS1? he'd bloody killthem!) and I want nothing to do with non- disability team resources, am so not going down that road.

if you're entitled to legal aid Shiny then go for it- its good that somebody can and has the willingness and ability. And remember that teh government just yesterday announced a review of SEN as aprt of their 10 year childrens plan- local MP's would be worth contacting!

'I keep seeing roles for myself for when I've got my degree.. they get away with SO much! They are supposed to be supporting us. Instead, everything has to be a huge battle when life is so hard in the first place! '

Me too Shiny, once I hve the ASD MA i'm going to Kick Some Arse LOL! (indeed as most on the course will be SW types I am certain to kick a bit and deliver a few reality checks during it as well.....)

My friend is doing a childcare course, and her teacher kept saying 'children wioth Sn have plenty of provision'- she got up one day, told her to stop talking bollocks and told her our story LOL - that shut her up!

Ask to see a copy of the policy document that states children in ms education are not entitled to respite!
I wonder if they can produce it?

There's never a waiting list for special schools as places are allocated on need, so there are usually termly panel meetings- where names are put forwards and its decided whether to accept a child or not. A waiting list wouldn't be fair as they may be someone who needs the space more who gets on the list later iyswim. This can go in your favour. When schools are full (as they often are) it would be usual for a child to go to panel repeatedly until a space becomes available (if you plan on going to secondary- best to get in early or round here at least you have no chance as every child in the council is up at panel for year 7). What is impossible to find out here is whether a school has any places at all- so its not uncommon for a child to go to panel even though there are absolutely no spaces at all- but you only find that out after panel.

We were in a similar position to you - and ds1's and our lives did improve dramatically once he moved to special school for all sorts of reasons. One big reason was that everything became joined up. Rather than me chasing people and dragging ds1 here there and everywhere (which was getting impossible- We can't manage the corner shop let alone the wait for a paediatrician) people came to him in school. Once mainstream stops working I tend to think it can be wise to get out. Certainly a lot of people commented that I 'didn't look ill anymore' once we'd switched.

It sounds like your respite lot just make stuff up anyway if they're telling you you can't access it because your chid's at ms, and they're telling fio she can't access it becuase her child's at special. I think a stinking letter copied to MPs and - more importantly - local councilors plus everyone else you can think of may make them rethink their policy. My friend did something similar here and it did mean that they at least implemented a piolicy and dp awards became slightly less random.

Thanks Yurt. Have just decided I am going to start by doing exactly what MMM just said; I am going to ring them tomorrow and ask for a copy of this document (which doesn't exist I'm sure; it can't do!) and say I need it to take to the appointment with my solicitor.

I also may go to the press. I don't mind them making a sob story out of it as long as they don't include my other children, well in particular DS1 who would balk at that.

I can understand that about waiting lists actually; was just quoting what the SENCO told me. I would have thought she'd have known that actually.

ms schools never know what is going on in special. My friend was told something similar by her Senco (I had to say 'erm I'd check that if I was you..." ) - anyway a few panel meetings later and a space has been made- it took a little while though (and there was no other suitable school).

This afternoon I rang and asked to speak to the team leader of the Children's Disability Team dept of Social Services. When I got through I said who I was and was ringing regarding yesterday's panel meeting and said I would like them to send me a copy of the policy document which states that disabled children being educated in mainstream are not entitled to overnight respite. (Thanks MyMateMax )

She stuttered a bit and said "Ah yes, I have been staying abreast of your son's case but I wasn't actually on the panel myself". I said "that's fine, I would just like a copy of the policy document.."

She said "well I'm not sure such an actual document exists" to which I said "well I am assuming that surely it must; the decision must have been based on one such a policy musn't it?"

So she said that what she would do was to document my enquiry and look into sending me what I required.

I then spent 45 mins on the phone to DS's school SENCO who is outraged about the decision and said that whilst it is my choice as to how far I want to take the protest over how the "decision" was made and what it is supposedly based on, she and the school are totally behind us all the way. She also said that, as a seperate issue, taking everything into consideration, that now was probably the right time to give more consideration to DS going into special school via a phased transition but it was up to us (and availability of places!) as to how quickly we would like this to take place.

I am making appointments with both possible special schools. But I'm not doing this in order to get granted overnight respite as we ought to be getting that anyway. After all we were already granted it and getting it until DS was deemed too challenging to be accomodated by home based overnight respite - which is why he needs centre based care. Even for just one night a month; we can get by on that.

I am going to play it by ear re taking legal action. I am not ruling it out. I have also contacted Ofsted to ask for a copy of the most recent inspection report for the centre where DS would have been going if the panel hadn't refused, to find out if it states any admission criteria in particular mentioning children in mainstream education.

Even if DS is fast tracked into special ed (he was going anyway at some stage!) I am not going to let this repsite issue go. Whether or not a family gets respite should be nothing to do with the type of education the disabled child is getting; it's just not relevant (unless the child is in residential of course). I'm not going to roll over and let them ignore the whole concept of the inclusion policy by penalising people for using their right to choose.

Will keep you posted!

And I would be grateful for any pointers as to what people think I should be doing/saying as I go along. Thank you.

What a bunch of tossers

Your ds is very lucky to have you fighting his corner. I quite agree that where he is educated should have nothing to do with you getting some overnight respite.

Good luck with it whatever you decide to do

Well done, they won't be trying to fob you off in the future.
You are 100% correct schooling & respite are entirely separate issues.

A friends ds was refused overnight respite as they said he did not need overnight medical care or intervention. In the end they had to admit that there was no truth to that statement & the only reason he was refused was because the dept funding overnight respite was over budget. They'll try anything on & they think parents are stupid.