My trust in professionals and the 'system' is disappearing fast

[claw2]

Please tell me some stories of competent professionals you have countered?

From a visit to my GP, after waiting an hour for our appointment, where I asked that ds be prescribed 'sugar free iron medicine' and i double checked it was sugar free and also some vitamins to be the told the iron medication contains vitamins as well. I also double checked this with him too. To be handed syrup iron medication containing not a trace of vitamins in the chemist.

To SALT and school saying they have provided a service to ds, when I know for a fact they haven't and when asked repeatedly for copies and evidence, been ignored.

To Social Services, over riding medical professionals and doing what the hell they want. Again, any formal complaints totally ignored.

Previously OT, no assessments, no therapy, no reports. Who then try to write a report a year later just so they can discharge.

Previous Paed's, being pushed from pillar to post, never seeing the same one twice.

Continence assessments, attending appointment, after appointment providing info and that's it, doing exactly the same thing in 6 months time.

Im just sitting here thinking what a total waste of money and everyones time. Moan over with!

I certainly wouldn't pay for the LA EP service I got yesterday where I was told that a child should never be labelled as it pathologizes them!

I was told that my son's social communication difficulties are actually "normal" and given a lecture about what I should/shouldn't say around him as I will make him believe that he has these difficulties!

The KEY technique used by all the state agencies against parents battling for adequate provision is to make parents feel isolated and as if they are the only ones dealing with a specific issue. Twenty years ago this may have been the case, nowadays parents are able to reach out to each other despite the RL social isolation families with disabilities suffer.

This is sooooooo true. The number if times I was told that they'd never heard of such a thing, or never come across a child doing this, etc

Then I read on MNSN how others are going through similar experiences

Absolutely agree.

It's also part of that technique to make you feel as if you are asking for outrageous levels of provision and are extremely selfish. If I had a pound for everytime the vile LA officer said 'we don't have to give Rolls Royce provision'.

So you are always told you are the only one asking for x,y and z and that 'no child in county gets......30 hours a week support or direct therapy etc etc'

In fact they may not but that is undoubtedly more to do with policy than needs.

And that is the problem. In that gap between practice and law, you'll find the words and advice of hundreds of practitioners (EPs, OTs, SLTs etc) who will tell you that they have integrity and only assess according to need and that a child's needs dictate the provision offered. Yet they all do so against policies which tell them that certain things don't need supporting or that a child's need has to be of a certain level before they should recommend support etc etc.

In such circumstances protestations of integrity are worthless as the law is not even being followed.

Neither is it being followed as they share casually information about a child to undermine a parents's case.

Neither is it beng followed as they fail (or refuse) to specify and quantify because the LA told them not to.

Bochead is so right. We no longer need to rely on face to face contact for parents to share experiences and the law. But then faced with parents who know their rights, alsorts of nasty tactics surface.

IE Do you think many parents do know they rights?

In the schools that ds has attended, I have only ever spoken to a handful of parents of children with SEN's all of which seem totally unaware of their rights and procedures etc.

When I asked for a electronic copy of draft statement, LA seems quite shocked. When I have asked for a copy of school file, its as if another parent has never requested it.

I get the impression that not many parents in this borough apply for SA.

When I attend meetings, its literally as if I am speaking another language, as I assume that others in the room are aware of the procedures etc, but they really don't seem to be.

I would add ive lots count of the number of times I have been told 'just leave it up to school' to apply for SA, by other parents, by school, by professionals, as if its just not place to be deciding such things. Same as when I have asked for any assessments (EP, SALT, OT etc) to identify needs.

Its as if I am then treated with contempt for having the audacity to ask. Everyone becomes extremely defensive and I become the 'enemy'.

Those nasty tactics will eventually be eradicated too, via the same mechanisms. Sad though it is for our own children - the parents of the generation that follow will have developed effective techniques to counter the spite some of us have had to endure in the same way that the children of 1st generation immigrants overcome hurdles their parents faced in a new land.

The 'shock' is not real. My DP request clearly shows the rigmarole around getting an electronic copy of the working document pending tribunal. After delaying by insisting that the legal rep was authorised to make the request and having run out of other tactics an internal email then asks 'shall I send a paper copy?'.

The problem (one of them) seems to be that although the LA have illegal policies, they are allowed to both require schools to apply them and to tell parents that their child is not 'bad enough' to qualify for a statement. I was shown a printed chart of the NC level a child needed to be at in order to even qualify for support at SA+ (1b in year 6) and was told that they were doing me a favour supporting DS1 as he was at level 3c. It didn't matter that he had been at this level for 4 years. He was probably not dyslexic because he could read and write and even if he were dyslexic he would not get any more or different support. This was told to me by a head-tilting sympathetic LA EP. It was not only all bollocks (he did 'qualify', it did matter and they did have more and different resources) but it was unlawful.

However, the school, LA etc are able to get away with behaving unlawfully because only the treat/actuallity of a tribunal hearing makes them behave lawfully. The whole process takes so long that they are able to 'save' money by not meeting needs unless they are forced to do so by a tribunal panel. Even then, there is no consequence to the illegal behaviour that the LA have engaged in for years prior to the tribunal hearing.

Why can't the tribunal automatically rule that statements must be specified and quantified in order for the LA to defend the appeal? Why does the Tribunal allow the LA to ignore it's deadlines, say for a WD 10 working days before hearing? We got a paper copy on the morning of the hearing - this was the first time we had seen any document since the proposed statement which then became the final and which then became version 1 of the WD. So much time is wasted bringing cases that should never have to be resolved at tribunal.

The courts service is keen to reduce costs (to say the least) and cases are supposed to be vetted by the registrar around a month before the hearing date to make sure that all sides are ready. I wonder how many times tribunal has disallowed the LA from continuing to defend an appeal?

Our GP's are mostly awful. There's only one I like visiting and it's not the lady doctor. We're rural, so have no choice.

OT has been bad to middling. After several aborted attempts, over many years, we finally had a sensory report for DS2, but no follow up. They discharged DS2 because he wasn't willing to Touch The Spaghetti or Playdough and they had nothing else up their sleeve - his sensory defensiveness was getting in the way or the fine motor work they wanted to do, but they weren't going to deal with that.

SALT has been great - very communicative and supportive. And honest.

We have 2 great LA EPs, particularly this last one and ASD outreach has been consistently fab, too, with both of the people we've had very much willing to rip up the percieve ASD wisdom rulebook for DS1 - the more recent one even recognised that he had a lot of features of PDA.

CAMHS - understaffed, overstretched and awful admin (another one chasing up letters and I've given up trying to re-arrange DS1's next appointment so it doesn't clash with the start of school. We'll just have to take DS2 with us.) His psychiatrist is lovely, though.

Good experience in LA#1

HV raised concerns about ds at his 2yr check, SALT (who was absolutely wonderful) and SN nursery involved.
Age 3-8 yrs Brilliant people at ms nursery attached to primary school,excellent one to one support throughout, lovely pro-active teachers, good HT always available and responsive. EYST also excellent.

LA #2 for the last 7 months. CAMHS good, excellent and useful report and referral to brilliant nurse/practitioner for advice/support/CBT type sessions. Autism Outreach, short observation, produced excellent report to advise school what my ds is going through pointing out triggers and anxiety. LA is also consulting parents, but I feel very cynical about it, at least they are consulting....

I think there are good people out there, but it is a lottery finding them and getting harder to access good support, how must that be for children who have parents that don't or can't access the support?

Keeping - very good point. In civil and criminal proceedings there are directions hearings to get things knocked into shape. There should be an automatic telephone hearing after the case response has been filed with clear directions to solve any issues pending risk of strike out,

No one will put this in place as the process pretends we are 'working together' which is bollocks.

This may look as if it would cost more but it would surely save massive delays and hearings being listed which are withdrawn etc

I think the tactics are more than just isolating parents. It's turning parents against each other. That those who get good provision only do so because of their sharp elbows and they are the ones depriving others of funds / screwing over other children with sen. And yes the guilt trip put on me for having a package 10 or 20 times what other similar children have. Yet I have always gone out my way to pass on my knowledge and help others to get the same including volunteering on advice lines etc. I'm sick of being told its inequitable for my son to have ABA. Because in LA land equity is always about levelling my childs provision down not levelling the other children up. I have no control how they set or distribute their budget but I am personally resonsible for why other children get terrible provision. And other parents believe this so they achieve their aim of dividing parents and making challenge less likely. The myth about sharp elbowed parents is endemic. No one notices that its because LAs put so many hurdles in place that only a small articulate determined percentage reach the finish line. The less able drop out not because the sharp elbowed shove them out the way but because the LA rig the race with trip wires.

Keep, although tribunals make them act 'lawfully', they do not make them act morally. School for example backing you all the way, until a few days before Tribunal then 'switching sides' with the intention of not giving you enough time to gather your evidence as you think you have their support.

Giving very 'inaccurate' info at Tribunal and then not being held accountable for it. For example that ds has all this wonderful support in place and school are meeting his needs. Tribunal decide school are meeting his needs. Although school have not provided any evidence of this. Apparently its down to me to provide evidence that they are not, rather than them having to provide evidence they are!

Everything is stacked against parents, whatever happened to working in partnership, did this ever actually exist

My LA told my advocate that the rise in tribunals in their LA was due to parent support groups. Not because they are shite then!?

Consequently there are very few 'support groups' and the ones that are 'supported' by the LA unless they are completely self-sufficient funding wise and never ask for community grants etc. plus held at the weekend.

And yes tribunal judges do have case management powers they don't use. In a civil case I could have applied for summary judgement at the outset on the basis the LA had no evidence for a mainstream placement as even their own EP said SS or ABA. I could have got their case struck out within a month if them putting in their response to the appeal. The writing of the statement was negligent as none of the evidence supported the placement they named but I can't afford to sue them and there's no legal aid anymore. I did look into it but no sol would take it on. We complained but the chief exec wittered on about how difficult it was to balance complex evidence when in our case there was no balancing to do as there was no evidence on their side at all. We persevere for 4 years of complaints, ico complaint etc but never got an answer why the sen officer wrote the statement she did. We know the answer of course a blanket policy of mainstreaming all children until there is at least 2 years evidence of failure provided by a school.

I have been told by both schools that ds has attended that they have NEVER had a parent apply for SA before.

I was told by the LA they have NEVER had a parent request an electronic copy of the draft.

My actions really seem to have put everyones backs up, its as if they take it very personally and then have to go out of their way to try and prove me 'wrong' regardless of the consequences.

When did it become a personal battle with parents, rather than identifying the needs of a child.

In our tribunal, the Autism Advisory teacher started defending her service on the basis that they couldn't provide 20 hours of autism intervention as recommended in the National Autism Plan (Raise by us) as they only had 5 Autism Advisory Teachers for the whole county and a handful of nursery nurses and the number of children with autism had doubled.

Their solicitor coughed loudly and demanded a toilet break.

She came back red faced. It was when I realised that (despite not liking the stupid cow) that it actually had to be pointed out to her that she was not there to defend her service in terms of them doing the best they can, but her job that day was to deny my child his legal educational entitlement.

Since then I have wondered if Herts not only isolate parents but also some staff, in that they carefully control the information flow to those on the front line.

If it wasn't for MN I might add, I would be non the wiser. What happens to parents/children who don't have MN or any other sources of reliable and accurate info.

Oh yes. When ds' statement said one SALT visit a term, I was told that this was a HIGH level of support, and children who couldn't talk weren't even getting that.

It became 2 hours a week direct therapy and delivered another 3x a week by a TA who had worked in a SALT base.

Then later it became daily.

Wonder what 'daily' would be called then? Moon cheese?

Even parent partnership 'Well I've never heard of anyone having the hours of 1:1 support actually written in the statement'.

Sure of course luv!

In the run up to tribunal poor DS1 had about 10 assessments. Madness. SALT and OT assessments were not carried out for SA so we went private. The LA then commissioned their own private reports. So we went from no assessment for statementing to multiple and duplicated assessments to try and get out of meeting DS1's needs and to 'prove' he could go to a school he was not able to attend.

DS1 did not understand why the assessments were being repeated or duplicated. We did not tell him that we were working together but that there was 'our side' and 'their side' and that their side wanted to gather evidence to prove that he would be ok at the local m/s because it was cheaper. He asked 'don't they care about what I want', 'No'. I'm not going to peddle their 'every child matters' crap to my son. He has a problem with people who don't mean what they say at the best of times.

DS1 refers to the LA EP as the President of the Bumheads and asked 'what does he say to his mum about what he did that day - oh today I ruined a small child's life, what's for tea?'.

I also am quite angry about the fact that the assessments for SA are patchy at best and not conducted by everyone who might be relevant, but a month before tribunal and suddenly major strategic assessments are conducted in quick succession, NOT for the benefit of the child (as if they were they would have been done in the first place) but for the purpose of capturing tactical data for a tribunal win.

I'm most angry that a fortune in public funds is spent on finding reasons NOT to help a child, when usually a mere fraction of that money spent in a transparent DIRECT manner could often be life changing.

It costs just as much to produce a vague, woolly ill-defined report or statement as it does to produce one that is specified, quantified and written in plain English. It often costs MORE to defend that piece of nonsense at Tribunal that it would have done to implement appropriate support in the first place.

How much do all these "panel" meetings cost when you break it down to hourly rates of attendees, room hire etc? How much is spent on legal fees to defend the blatantly unlawful and indefensible? Those "home visits" to tell the parent they are being unreasonable in asking for help rather than give a desperate Mum a few relevant worksheets so she can implement a programme of exercises with her child herself?

It certainly costs the nation more in long term adult welfare costs NOT to educate these children in most instances. If my son was able to receive his legal entitlement to an adequate education, I'd be able to work in the 40% tax bracket. Instead long term poverty is our lot, and the costs to the state are vastly increased.

Boc, that's not to mention all the other totally irrelevant professionals the LA involve. How much does that cost?

I write to school/LA telling them of ds's anxiety and self harming. The logical thing would be to ask EP or at the very least ASD advisory for some advice. They choose instead to report me to social services! I have a copy of the email where this was decided and it actually says 'mum has applied for SA' 'Actions' XX to phone SS! since when did social services become part of the SA process.

SS are used to bully parents into submission in this neck of the woods. The long term damage this has done to my son and our family is immeasurable. To label a parent who expresses concern for their child's welfare insane, neglectful or abusive is to me the very worst kind of systemic bullying and such "professional" behavior is beneath contempt.

and shouldn't there be guidelines for exactly what is/isn't discussed at SA 'panel' meetings and outcomes?

I have another email from when I previously applied for SA, case officer was in the process of preparing a draft statement, 'panel' had a meeting and the outcome of that meeting was 'to report mum to SS regarding her anxiety' and not to issue the draft statement. Its not written in any report or even suggested in any report or any evidence they had before them that I suffer with anxiety, quite the opposite. Where do they get off dxing parents and was I even being discussed at a panel meeting. Why were they even having a panel meeting, if it had already been decided to issue a draft!

These people can do what the hell they like and that is very, very scary.