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How about THIS for blatant discrimination???!

55 replies

ShinyHappyStarOfBethlehem · 13/12/2007 12:32

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?

OP posts:
FioFio · 17/12/2007 11:50

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ShinyHappyPeopleHoldingHands · 06/01/2008 20:23

Thought I would update on this situation. This weekend I send the letter below to the District Manager of the Children's Disability Dept. Of social services.. it took me this long to do the necessary ground work. Please note the part about Ofsted!

I'll keep you posted on what happens next.

For the attention of .... ? District Manager Children?s Disability Team

Dear Sirs

I am writing to you with regard to the recent decision of the respite panel to refuse my son, .....(DOB 18.06.00) overnight respite at ..... on the basis that he attends a mainstream school.

I have since made some enquiries and also taken legal advice from the Disability Law Service regarding the above decision as I feel very strongly that to deny a family a service based the type of education a child receives is not only discriminatory but also goes against the inclusion policy which states that parents of disabled children are entitled to choose whether their child is educated in a special or mainstream environment (dependent on available provision).

Following several unsuccessful attempts to obtain a copy of the most recent OFSTED inspection report for ..... Respite Centre, so that I could view the wording of the admissions criteria, I obtained a copy of the Statement of Purpose and Function for (..... another slightly further away) centre instead which I understand is worded similarly. Page 14, the last sentence in paragraph one states.. ??all children accessing the service attend specialised educational provisions.? I understand that it is this statement, on the ...... document, that resulted in my son to being refused overnight respite on the basis that he did not fit the admissions criteria.

Further enquiries have ascertained that the criteria currently being used by respite centres was set by OFSTED themselves which perhaps explains their unwillingness to provide me with the information I requested and to which I am legally entitled.

The Disability Law Service were able to confirm that centres who adopt this criteria are indeed contravening the purpose of the Inclusion Policy and that I am within my rights to seek for respite centres to change the wording of this section of the Statements of Purpose and Function to ?..most of the children accessing this service..? (or ?the majority?.) instead of all. This is then a statement of what is currently fact, not a statement which allows respite panels to rule children out on the basis of where they are educated.

I feel strongly about this because the Inclusion Policy has given us, as parents, the right to have a say in the type of education provision we feel is most suitable for our children with special needs. We should not then be penalised for exercising this right. It should also be considered that as mainstream schools become more inclusive, there will be more children with various types of disability, some of them complex, being educated in mainstream. The amendment that I propose would prevent further families being denied a service which, frankly, has nothing to do with their children?s education. Many families are suffering chronic sleep deprivation as a result of the sleep difficulties of their children who have special needs. There is no reasonable argument in defence of a ruling that families should not be allowed overnight respite in centres, because their child ?is not disabled enough to attend a special school?; this concept is out of date since the advent of the Inclusion Policy. Being as it appears that OFSTED are responsible for this discrepancy, I will be writing to them also, to point this out to them, and will await a response, taking further action as advised, if necessary.

Secondly, I would like to specifically request that my son?s case goes back to panel as soon as possible, for the above reasons and also because it should be acknowledged that a panel had made a previous decision that we should be receiving overnight respite as a result of my son?s sleep issues and during 2007 that is indeed what we were getting. The fact that overnight respite at the home of my son?s respite day-care worker proved unsuitable (unmanageable for her due to the extent of his sleep issues) surely does not make us any less entitled, rather the contrary. In these circumstances, a respite centre is obviously the answer, as agreed at the Child In Need meeting held on 17th October 2007, when it was arranged for the case to go back to panel. A decision not to award this leaves us without a service which it has been previously agreed we are entitled, and of which we are very much in need.

It should also be noted that my son?s current school, ......Primary, ........., not only contains a PD unit, but is also a flagship school for inclusion, so is in fact incorporating special education into its curriculum, which is thus adapted to the needs of individual children via outreach services and input from visiting therapists.

Furthermore, for the purpose of your records, although not in any way connected with the decision of the panel, arrangements are currently being made for my son?s phased transition into special school, either .......... or .........., in the near future. This is due to my son?s needs being unanimously considered by us, his parents and those who work with him, to be now more appropriately met by special education.

I await your early response.

Yours faithfully

An Extremely Narked ShinyHappy

yurt1 · 06/01/2008 20:52

~Looks good to me!

Saggarmakersbottomknocker · 06/01/2008 20:53

Great letter Shiny.

r3dh3d · 07/01/2008 21:46

I don't know if you've seen this SHPHH?

mymatemax · 07/01/2008 22:13

great letter!

FioFio · 08/01/2008 13:08

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dustystar · 08/01/2008 13:13

Great letter shiny

heartinthecountry · 08/01/2008 13:44

Shiny- The EDCM (Every Disabled Child Matters) campaign are looking for people to take cases to court where their child has been assessed as in need of respite and it has been refused. I think your situation might fit - might be worth contacting them at least. Details here:

As you know, EDCM believes that families with disabled children should have a clear legal right to short breaks. We now need your help to test the law.

Two leading community care lawyers Paul Bowen and Luke Clements have told EDCM that there is a 'strong argument' that a there is already a legal right to short breaks for families with disabled children in the greatest need in England and Wales. You can find out more about their legal opinion here:
www.edcm.org.uk/Page.asp?originx_4077xi_4803373555697f10j_200817287j

We now need families who are prepared to go to court so judges can decide how the law currently stands. EDCM is therefore looking for families in the following situations to see if they could bring a case:
(i) Families with a disabled child assessed as being 'in need' of residential short break care where the local authority has refused to meet that need.
(ii) Families with a disabled child assessed as requiring short break care at home (for instance a sitting service) where the local authority has refused to meet that need (because of resources or another reason).

Families will also need to be on a low income and able to get legal aid, so that the costs of the case will be covered.

Families interested in bringing a case should call the freephone Contact a Family helpline on 0808 808 3555 for further information and advice about next steps and eligibility for legal aid.

ShinyHappyPeopleHoldingHands · 08/01/2008 16:39

HitC I have had an email about that too.. just haven't read it! It came yesterday.. have had hardly a spare moment.. I'll look at it tomorrow (no time now.. brownies then swimming club..)

R3dh3d I'll check out that site too tomorrow.. thanks

r3dh3d · 08/01/2008 18:05

Lol SHPHH, it's just a link on another forum to the same thing as HITC posted! I saw the legal aid angle and thought of you instantly...

ShinyHappyPeopleHoldingHands · 13/02/2008 14:43

UPDATE!!

Just had a call form our social worker. My letter was "referred upwards" some weeks ago and we've been waiting for a response from the "top man" since.

SW today went to see him because DS's case is going back to panel (respite) tomorrow (one of my "demands" in the letter) and she wanted to know what was happening about my other "demand" (that the centres change the wording in their mission statements so that children who attend mainstream schools cannot be discrimated against.)

They are changing the policy!!!!

I am so pleased. I really thought I'd have to start a community campaign which would have been the next step!

Apparently he had to liaise with Ofsted, who advised the wording in the first place as we know. I would loved to have been a fly on the wall because Ofsted have been emphatically ignoring ME! Well they couldn't in the end! I feel a bit as if I've taken on Ofsted.. and won!

This will obviously change things for us.. but the main thing for me really is that no other family in the country who are utilising their right to have their SN child educated in mainstream will now be able to be told they cannot have centre-based respite care as a result! YAY!

A victory for the little person

magso · 13/02/2008 15:12

Well done Shiny! Hope all goes as well as you hope for tommorrow!

welovetelegraphpoles · 13/02/2008 16:20

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ShinyHappyPeopleHoldingHands · 28/02/2008 13:23

Turns out, after all, that they haven't changed the policy "because it would open the door to any family with a child in a m/s school wanting respite" (WTF??!).. so I have contacted CaF re the Every Disabled Child Matters campaign to see if they are interested in supporting me on this.

We can't be used a test case (frankly that's a relief!) because as things stand, we are in the process of being offered o/night respite provision (at a different centre.. one with different wording on it's statement of purpose and function, apparently.)

The Disability Children's Team manager sent me a letter this morning.. and instead of the one I was expecting - confirmation that the policy was being changed as I had been told verbally - that the "reason DS was turned down was due to him not having a Statement of Special Educational Needs at the time of the panel meeting..."!!!

DS has been Statemented since he was 2 and a half! And he's now 7! So nice try but but I rang them straight up about thatand said "he was turned town BECAUSE HE attends A MAINSTREAM SCHOOL AND YOU ARE QUITE AWARE OF THAT!!"

I am so angry!

TotalChaos · 28/02/2008 14:00

That's disgraceful, obviously they are backtracking as they don't want to shell out for other parents in a similar position to you.

ShinyHappyPeopleHoldingHands · 28/02/2008 15:00

I think they were just hoping that we would shut up and put up now that the panel is in the process of granting us "something". But that beside the point to me now.. (not that we've get to hear from the centre about DS's assessment and he has yet to "pass" it!).. I am not going to let this lie!! As school become more inclusive (as they have to), more families will come up against this discriminative issue if it's not sorted..

bonkerz · 28/02/2008 15:38

shiny stay strong, You are fighting for everyone and i know how hard that is. Your DS is VERY lucky to have a mummy who fights so hard for him.

magso · 28/02/2008 16:28

Shiny, good you may at last be getting some respite. Just a thought-(I'm not good with words)but would changing the wording to receive specialised eduactional provision (rather than attends) allow the centre to accept children who are supported by a statement in ms?

mymatemax · 28/02/2008 22:07

Shiny, good to hear you are going to get the respite.
Do you think one of the disability charities would be willing to take this fight on.
Just thinking it may give you a rest from all the battles, i know they are endless anyway.

ShinyHappyPeopleHoldingHands · 29/02/2008 11:05

Magso, that is exactly what I was requested and I was told they had agreed to. I jsut want them to change the appropriate sentence of document to say "most/the majority of..." (the children) rather than all. It cannot then be used as a statement which disregards those in m/s and is instead, a statement of fact. I don't know if the Statement (of SEN) but would be relevant because there are Statemented children who would never be elegible for o/night repsite purely because they don't have a high enough level of need for the parents to be entitled to a break of this kind, although they may have significant educational issues.

MMMax, CaF suggested this too. So if EDCM can't take it on, they are going to look at who can.

FioFio · 29/02/2008 11:07

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FioFio · 29/02/2008 11:08

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ShinyHappyPeopleHoldingHands · 10/03/2008 12:36

Latest update. I got a letter this morning aplogising for the fact that DS has a statement (?!) not being made available to the original panel (I don't believe this is the case for a seocnd!) and I am going to be contacted by this woman's boss (this one is the Manager of the Dsiabled Children's Service) to discuss a "relevant" point which I have made "regarding inclusion".

I have responded with this:

Dear Ms S..

Thank you for your letter dated 7th March in which you respond to comments I made during our telephone conversation in response to your letter dated 25th February. For purposes of clarification, your letter dated 25th February referred to ?F".. [wrong respite centre's name} instead of ?S...? respite centre and also stated that the reason why (DS) did not meet the criteria was due to his lack of Special Education Needs statement.

I rang you to point out that (DS) has had a Statement since before he was 3 years old. He is now 7 and it has been reviewed/updated annually since then. The reason (DS) did not meet the criteria is because he is currently being educated in a mainstream school, which as you know, I have taken particular exception to (despite a subsequent offer following a more recent panel meeting, of possible provision at Preston Skreens) because I feel it strongly contravenes the essence of the inclusion policy which gives parents of disabled children the right to choose where their children are educated. As discussed, as mainstream schools become more inclusive, other families will inevitably be affected by such decisions, as their cases go to Panel.

In your letter dated 7th March you apologise for the fact that information regarding the existence of (DS)?s Statement was not originally made available to the Service Provision Panel. I am rather concerned about this. When a panel are making such an important decision about a child they can know little about other than what is on paper, I am wondering why such an entirely relevant document as a Statement of Special Education Needs would not only not be available for the panel to look at, but knowledge of its existence would apparently be unavailable also.

Furthermore, our social worker [insert name] was the person who took our case to Panel, and was told, clearly and precisely that the reason (DS) did not meet the criteria was due to the fact that he attended a mainstream school. Had anyone mentioned lack of Statement at any stage, she would have immediately stated that (DS) does indeed have a Statement. I have discussed this with [SW's name] and she was amazed that ?lack of Statement? or indeed anything to do with his Statement was being documented as the reason (DS) was declined provision. She assures me this was not the case at all. A child with (DS)?s degree of complex needs (which were presumably discussed at the panel meeting, or how else can they be expected to make a decision about provision?) would hardly, as the situation currently stands, get to Y3 in the education system without a Statement, wherever he was being educated.

Immediately after the February Panel meeting, (SW) rang me with the outcome and told me that we were to be offered an assessment for P,, (respite centre) (which has yet to materialise) instead of W.. (respite centre) and that the reason for this was because the wait for any provision for DS at [W (respite centre) was likely to be until at least September which she had told them was too long for us in our current situation. Therefore please also note that the possibility of a place at P (respite Centre)was NOT offered ?because the admission policy is different? as stated in your letter of 25th February, but because of the waiting list.

I am rather concern about what appears to have been a ?warping of the facts? regarding the reasons (DS) was originally declined overnight respite provision, from the point of view of being turned away because he is educated in mainstream, and the subsequent inaccuracies in the letters that followed, and for this reason I would like this matter investigated as an official complaint, as you have stated is my right, and, if/as necessary, for it to proceed to Stage Two and be looked at by an independent Investigating Officer from NCH.

This is because I am extremely dubious that an honest mistake (re (DS) being without a Statement) can have been made; (SW) was there on our behalf; the reasons relating to mainstream where clearly stated to her) but if a lack of Statement had been the reason, this alone requires investigation; as to how a case could get to Panel (a meeting that families such as ourselves often wait months for in difficult and deteriorating circumstances) without entirely relevant documents being made available in order for the Panel members to make appropriate decisions.

Meanwhile, I look forward to hearing from [her boss/overall area maanger) in order to discuss the ?inclusion? matter and also look forward to a response to this complaint.

Yours sincerely

Shiny"Happy"

welovetelegraphpoles · 10/03/2008 13:04

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