In my previous post I talked about Maria's
Special Educational Needs Statement and the way my Local Education Authority (LEA) had reduced Maria's
speech and language therapy and
occupation therapy provisions without making us aware and discussing it. Once I realised what was going on then I started to ask questions, but they had no answers. My frustration with the LEA generated the energy I needed to spur me into action. I hadn't realised what they were doing until it was too late and I kicked myself for not reading all those LEA letters and reports more carefully. Never again!
It all started two years ago when Maria was aged 8. The LEA
Educational Psychologist (EP) conducted some tests (WISC IV) in August 2016 and reported that Maria's cognitive (or reasoning) abilities were "extremely low". Then in October 2016 an LEA
Speech and Language Therapist (SALT) conducted some tests (CELF-4) on Maria and reported that her '
receptive and expressive language abilities fall in the "Extremely Low range of ability" in relation to her chronological age.' The SALT noted that her assessment results were in line with those of the EP. Her conclusion was that Maria was having difficulties accessing the National Curriculum and that she would benefit from "
a programme of activities delivered by the school and reviewed twice a year, rather than direct blocks of therapy".
To paraphrase, the EP concluded that Maria is an imbecile (a medical term used in the past to mean someone with moderate to severe learning difficulties) and the SALT agreed, advising the LEA they shouldn't waste resources trying to teach Maria anything but should just pay lip service to addressing her needs. So, instead of trying
harder to help Maria improve her language abilities, they just gave up, believeing that since Maria's cognitive abilities were so low then there was little they could do to improve matters. The SALT wrote that Maria will "
benefit" from such a programme of activities. She felt that Maria would actually
benefit if the SALT wasn't there!
This is what I call "giving up". It's based on the philosophy that you can't do anything to improve a persons cognitive abilities because these are hardwired at birth and cannot be changed. It's the nature-nurture argument. Your intelligence is determined by your genes and your environment has little if any influence.
Some of you will have read my earlier posts on the new science of epigenetics, which tells us that the expression (activation) of our genes is influenced by our environment and our experiences. So the environment has a significant influence on our bodies. It seems that modern psychology needs to catch up with modern genetics. We are
not our genes; we are the
expression of our genes; and that expression is influenced by our
environment and our
experiences. Our experts need updating and retraining to recognise their own implicit biases.
Getting back to my story: nobody at the LEA found the SALTs conclusions unusual or unfair and so Maria's SALT provision was reduced, without direct discussion with the parents. They then went about setting their conclusions in stone by updating her new Statement with their conclusions. A year later the same thing happened to Maria's OT provision, which was reduced from blocks to termly reviews. Once again, the LEA considered this to be in Maria's best interests and so her Statement was changed without question and without discussing it with the parents.
The school system didn't seem to be working either. I witnessed Maria making the same mistakes writing letters of the alphabet for several years. Clearly this couldn't happen if she was being taught correctly, tested, monitored and reviewed each year by her teachers and other experts.
Now you may be thinking at this point: well, if a child is "uneducable" then what's the point trying to teach the child anything. Well, that's a bit of a self-fulfilling prophecy. As it happens it's not true of Maria. Maria is not uneducable. She's learnt a lot in the past two years and she continues to do so. Teaching her is
not a waste of anyones time. She's started to read books and write sentences. I've personally managed to help correct some of her alphabet letters in as little as thirty minutes. She can do up her zip and buttons. She can get herself ready for school in the morning with only prompting to keep her on track. She's starting to do basic arithmetic too. So there's no reason to give up on her at this stage in her life. What kind of system would do that to a child anyway?
I tried asking the LEA why Maria's SALT provision had been reduced without my knowledge but I got obstructive and unhelpful replies. The more questions I asked, the more concerned I became.
I spoke to several SALTs who each told me that they didn't concern themselves with the child's
reading or
writing abilities while employed by LEAs. So a Speech and
Language Therapist isn't interested in writing or reading! The Oxford dictionary defines "language" as a "
method of human communication, either spoken or written". So why ignore the child's
writing abilities? Why aren't they testing Maria's ability to read
and write - using standardised tests?
And why was Maria's Occupational Therapy being reduced from weekly sessions to termly reviews? Had Maria mastered writing to such an extent that she no longer needed the input of an OT? If so then why was she having trouble writing "a", "8" and "2"? And was Maria's attention deficit such that she no longer needed the input of an OT? If so then why was she making such slow progress? Even I could see there was a problem with their policy (you could hardly call it "rationale") of reduction.
None of this made sense. The only explanation was that the LEA had either given up on Maria and concluded that she had no needs because she had such poor cognitive abilities. It takes a pretty heartless system to come to that conclusion for an eight year old child.
I was faced with a choice: do I fight the SALT department who wrote Maria's assessement and try to get them to change their conclusions, or do I just request a "full reassessement" of her Statement of Special Educationa Needs? It was about four years since Maria was last fully assessed and the original reports from the Educational Psychologist (EP) and others were looking a bit dated, so I requested a full reassessement, thinking and hoping that this would trigger a reassessment of Maria's SALT and OT needs and restore her original provision of weekly blocks of therapy.
I requested a Clinical Psychology report from
CEREBRA, the specialist RTS research group in Birmingham University who know Maria quite well. This was submitted to the LEA SEN panel for assessement together with our own Parental Views. In the end, a new SEN Statement was issued but with the
same dumbed down provisions for SALT and OT as in the previous Statement. I was not surprised. The LEA had already demonstrated it simply wasn't listening to parental concerns.
But how did they manage to get the SALT and OT consultants to turn a blind eye to Maria's true needs? Surely such professionals wouldn't do this to a disabled child who actually needed the services? Somehow, the LEA managed to do it and I have been intrigued how this happens.
I have spoken to independent EP, OT and SALT professionals who tell me that when they are employed by LEA's then they don't give
comprehensive reports on the child; the reports are
limited in scope. Some of these professionals told me they are not requested to give
full reports by the LEA when contracted to work for them; this would be a very costly business. This can only result in an incomplete picture of the child's needs.
Because the LEA contracts the EP, OT and SALT then they get to specify what type of report they want. My guess is that a symbiotic relationship develops between the LEA and these professionals; each side benefits by giving the other what it needs. (It's nice to know that somebody's needs are being met). The only way to break this cosy cycle is for parents to pay for their own EP, SALT and OT reports from
independent professionals, where the parent is the customer and can demand a more complete and comprehensive picture of the child's needs. And believe me, once you have seen the difference between an LEA SALT report and an independent SALT report then you won't want to trust the LEA reports.
These reports are not cheap. Here's what we paid at 2018 prices:
- £2200 for the independent Educational Psychologists (EP) report
- £800 for the independent Occupational Therapists (OT) report
- £500 for the independent Speech and Language Therapists (SALT) report
- £0 for the independent Clinical Psychologists (CP) report from CEREBRA
- £1800 for the SEN solicitor to write an Appeal for the Tribunal.
That's £5300 in total. If you want the SEN solicitor to represent you at Tribunal then you can add another £2500 to that figure; and you'd normally take your independent EP as an expert witness for a further £1000. This £8000 cost puts a strain on most family budgets.
The most important thing for us was to get independent reports from the EP, OT and SALT. Without those, we wouldn't know Maria's true needs. It's
essential to have those reports if you want what's best for your child. There's little point going to a Tribunal unless you get these reports done, otherwise the following will probably happen at the Tribunal hearing:
CUT
TO: A ROOM HOSTING A TRIBUNAL HEARING
You're
at the Tribunal and the Panel ask you:
-
what
are the relevant facts,
-
what
do you
think should be done for your child,
-
what
do you want the Tribunal
to do for your child.
The
Tribunal politely listens to your (non-expert) views and then
requests for some facts. The Tribunal asks if you have any
reports from your own experts. You look at them sheepishly.
The
Tribunal has little choice but to examine the LEA's EP, SALT and OT reports; the ones you're appealing against!
FADE
OUT
The Tribunal judges are experts in education and law, not psychology and physiology. They certainly can't conduct an assessement of your child in the Tribunal itself, so you can't rely on
them to work out your child's current and future needs without some help. All they can do is read the reports and recommendations of the experts and come to a decision based on all the facts. If you supply them with your own independent and comprehensive reports,
containing clear recommendations (an essential characteristic of Tribunal reports) then you're much more likely to win your case.
In the end, we decided to take the LEA to Tribunal. We paid a (bloodsucking) solicitor to write an initial Appeal statement. We paid for independent EP, SALT and OT reports and submitted all these to the Tribunal together with a Clinical Psychologists (CP) report by
CEREBRA. [By the way, CEREBRA charged us nothing for their report, which contained insights into Maria's condition that only they knew about through their research into RTS. A big
THANK YOU for that. They were the
only independent experts who didn't ask us for money.]
As soon as the Tribunal informed the LEA that we were launching an Appeal, they were obliged to contact us, to try to resolve the situation. Their way of doing this was to sit down with us, reassure us that they had thoroughly reviewed all relevant letters and documents and had learnt important lessons (I wondered if the lessons would be applied to every disabled child in the county. Probably not! That would be too expensive. They would only be applied to those children whose parents took them to Tribunal). They tried to reassure us that they would now do everything necessary to come to a mutually beneficial and agreed course of action. They agreed to accept our own independent reports and consider these in conjunction with their own SALT, EP and OT reports. They promised us everything we could have possibly wanted in the verbal meeting we had with them. Joan and I were very positive about the future when we left the LEA office that afternoon.
But following that meeting there was no letter or email confirming our discusson. This seemed a familiar tactic. I realised that without anything in writing our meeting had no legal status. We were back to square one. Were we to trust the very same people who had ignored us and deprived Maria for the past year? Why should we trust them?
Without a Tribunal
order instructing the LEA what to do and when to do it then we might be falling into yet another trap. We had nothing in writing to say what they promised us. They didn't back up the meeting with written confirmation of what we discussed. I've experienced this in the University sector; Heads of department making all sorts of verbal promises and then denying them, or saying you misunderstood what was discussed.
I thought that since we were getting all the reports done anyway, why not just submit them to the Tribunal, attend the hearing and wait for the Tribunal to instruct the LEA,
in writing, what they must do. That way it's all official and there's no informal discussion that can be misunderstood. So we decided we would go to Tribunal. Besides, I still had some unanswered questions I wanted the Tribunal to ask the LEA why they had reduced Maria's provisions. I felt their answers should come out into the open and be made public.
We had further meetings with the LEA and their EP, SALT and OT staff to ask a few more questions about Maria's proposed provisions. The LEA EP tried to put-down our independent EP by saying he was not well thought of and the senior LEA SALT criticised the experience of our own independent SALT. I said nothing because I knew that our EP was one of the best and most experienced people in the business; and I wanted to tell the LEA SALT that if they are so experienced then why didn't they spot all the needs stated in our independent SALT report?
These meetings gave us the opportunity to question the LEA about their reasons for reducing Maria's SALT and OT provisions. I needed to understand why they'd allowed it to happen. The LEA Manager told us she wasn't able to ask the original SALT because she'd left, so she tried asked the existing staff but couldn't come up with a reason. I knew they would never admit either giving up on Maria or to cost-cutting and I agreed with her that the Tribunal would not be interested in answering historical questions of this type.
So, in the end Joan and I decided to let the LEA off the hook and cancel the Tribunal, just three days before the date of the hearing. As it happens the Tribunal would never have take place because it was due to be held on Friday, 2nd March 2018. That was the day the whole country closed down because of snow storms!
Since then I've been working on updating Maria's Statement with the LEA. We are bouncing this document between us and making the necessary changes. I've had to make sure all the recommendations of our own independent experts are included in this new statement, otherwise they'd probably be ignored by the LEA's employees, who had little professional respect for any of our experts. This is despite the fact that our own reports gave a
far more comprehensive picture of Maria's needs than those reports by the LEA.
At this time (June 2018) everything looks positive and the LEA are sticking to what we agreed, even though it's taking months to agree the final draft of the new Statement. But the fact still remains that the LEA experts have deprived Maria of two years of intensive therapy that can never be replaced.
UPDATE (20 July 2018): Maria's Statement of special needs was finally agreed on 17 July 2018. It took the LEA and myself four months and nine revisions of the statement to agree the Final Draft. I had to make sure our own indepenent expert's recommendations were included in the statement otherwise they would have been forgotten. The Final Draft states that in September 2018, Maria will attend the same mainstream school as her siblings. She will have her own dedicated Teaching Assistant and she will receive speech & language and occupational therapies during school time and during the holidays. I believe this is the most ideal statement we could possible have achieved for Maria and I believe the LEA, the therapists and the school are all fully prepared to put into action what the Statement says. We live in hope that next year Maria will make some significant progress in all areas.
UPDATE (8 Oct 2018): The school and the LEA have been true to their word and have kept their promises. Maria is the only child with severe learning difficulties in her school but she has been given a room in which she can have her individual lessons with her Teaching Assistant (TA) as well as integrating with the rest of her mainstream class when timetabled to do so. She has friends in her class who look after her and befriend her in the playground. She is doing very well in all her lessons and her TA, SALT and OT are extremely pleased with her progress this term. Things are looking very positive and we are glad we took the advice of our indepenent EP and integrated her into a mainstream class. This has given Maria a chance to meet lots of "typical" children and it's given "typical" children a chance to meet a "special" child - a win-win for everyone.
