Special Educational Needs Tribunal

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:

1. what are the relevant facts, 
2. what do you think should be done for your child, 
3. 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.

Statement of Special Educational Needs

Maria in school uniform (2015)

Those of you who have Education, Health and Care (EHC) plans in England will have fond memories of the Statement of Special Educational Needs (SOSEN); but in Wales we still have them - for now anyway. In fact, just after we left England for Wales our Welsh Local Education Authority (LEA) had already been made aware of Maria and was negotiating with us which school we might choose. They didn't come out and say to us that Special Schools in Wales are only for chldren with severe learning needs. At that time, Maria was classed as having moderate learning needs and so the Welsh LEA recommened putting her into a mainstream school with an Additional Learning Unit (ALU).

We visited the local Special School, which is only five minutes drive from our home, but the Head Teacher made it clear that it would be very difficult for Maria to get in and she would have to wait until next year to apply.

So, we were pretty much pushed into accepting Maria into a large mainstream school with a large ALU of seven classes. Unlike the English Special School, this Welsh school didn't have a team of in-house Speech and Language Therapists (SALT). In fact, her new Welsh school told us that they had not been able to get hold of a SALT for years and, by a stroke of luck, this year the LEA had managed to find one and she was now busy doing assessements. When I pointed out that Maria also had Occupational Therapy (OT) on her statement then the school SENCO shrugged her shoulders (metaphorically) and told us that OTs were very difficult to find in Wales but that they had an in-house psysiotherapist who would help. Six months later and still Maria's OT provision hadn't been met.

In the meantime, the English format of Maria's Special Educational Needs Statement did not conform to the Welsh standards, so the LEA rewrote it into the Welsh format. It should have been very straightforward. The first draft looked okay but had a few differences about monitoring and maintenance which I questioned. They agreed with me and changed it into a second draft. After a few more comments a third draft arrived in the post and I assumed they had just implemented the small changes I had suggested. Everything should have been the same as the English version: Maria should have blocks of SALT sessions and see the SALT each week. The same for OT - just like she was doing in her Special School in England. Now all that Maria needed was an OT.

The NHS OT lagged by many months, so Maria didn't see an OT for six months. I got the forms to complain to the Obudsman about the LEA not providing the OT service that is required by law in Maria's Statement. But before I could complete the forms I got a phone call from the LEA telling me they had just hired their own "Educational OT", and Maria was top of the list to see him. I wondered if I should ask for Maria to have two sessions per week to make up for the lost six months, but I didn't. I thought to myself that at least they had made the effort to hire somebody and I shouldn't punish them by complaining to the Ombusdman or giving them a hard time.

And so everything seemed to be okay for a couple of months until I got a phone call from Maria's SALT telling me it was time for her review. I was confused. Why was Maria having a review at this time of year? She has weekly sessions with her SALT. Why does she need a review now?

Er no, she said. Maria's provision on her Special Educational Needs Statement had been changed from blocks of weekly sessions to two reviews per year. My heart starting to beat faster and I was speechless for a moment. WHAT!!!

After I calmed down I pointed out that nobody had discussed this with me. The previous SALT had not discussed making any changes to Maria's provision. I was incredulous and felt sure there had been a mistake. After the phone conversation - in which I asked the new SALT to go through Maria's records to see what reason was given for reducing Maria's SALT provision to two reviews per year by the previous SALT - I rushed off the check Maria's current SEN Statement.

Remember that third draft I mentioned? The one in which only small, routine changes had been made and so I didn't bother to check it. Well, in the covering letter it said that Maria's SALT provision was being reduced to two per year; and when I checked the SEN Statement itself, sure enough it had. I was LIVID - both with them and with myself for not checking the draft properly and for trusting them. Those sneaky ********! The two month period I had to complain to a Tribunal about the changes had passed and there was nothing I could do now.

I had spoken to the previous SALT many times over the phone. She hadn't told me anything about reducing Maria's provision. What was going on? I began to smell a rat. Sure enough, when the new SALT phoned me a day or so later, she told me that she could find nothing in Maria's notes that explained why her previous SALT had reduced her provision. I tried to convince the new SALT to put Maria back on her orginal provision; she was nice but vague and uncommited to any such action.

So my mind turned to what to do next ...

Family pressures with three children

When we lived in London, I was working as a Database Administrator near Oxford, which invloved a  daily drive of 56 miles each way along the M4 motorway; it took me on average one hour and ten minutes to get to work. [Eddy's Universal Law of Commuting in London: it takes one hour and fifteeen minutes to commute to work]. Joan on the other hand worked locally at an NHS Hospital as a A&E Staff Nurse. It took her about 20 minutes to get to work (that's not what I call commuting).

Joan would work night shifts, starting at 7 pm until 7.30 am the following day. I would work day shifts, starting at 9.30 am and finishing at 5 pm (flexible working hours).  Joan would return from work and I would leave; when I returned from work, we would eat for an hour and then she would leave. This system worked while we had our first child, Maria, but the system started to strain when we had Isabella two years later.

Maria, who was two years and six months, started sleeping in a separate room while Isabella, who was six months old, would be in a cot in our bedroom. I would look after her while Joan was working her night shifts. Which meant that I wasn't getting much sleep with all the night time feeding, but I would still be driving the 56 miles each way to and from work. Sometimes, on my return journey I would find myself falling asleep at the wheel. Fortunately nothing happened but that was sheer luck.

At about this time, Maria started nursery. So Joan would take her to the nursery (about a mile away) in a double-buggy, with Isabella.

Fast-forward two years when John is born. Joan takes six months maternity leave - breast feeding John for four months (Isabella was two months and Maria was only one month, owing to her poor sucking reflex). Things start to get complicated.

During Joan's maternity leave the hospital changed it's policy for staff: all Staff Nurses now had to work both day and night shifts - in the interest of staff "fairness". Up to now, each nurse negotiated her schedule to suit her personal circumstances. Now the system was not only inflexible but positively hostile to nurses with families. Several nursing staff who had families had little choice but to leave; Joan was one. She was asked to work two day shifts during the week but that would have been impossible in our circumstances.

We considered the logistics of how to mange our three young children: Maria attended a Special school; Isabella attended a nursery (with different opening and closing times) and John was still at home. We were placed in an impossible situation and with an unsolvable problem. Joan and I didn't have any relations who could help us out for free.

I sat down and costed the situation, using child minders to collect the children from school or nursery and keep then until I get home from work (assuming I didn't get stuck in a two hour traffic jam). It worked out at over £1000 in child-minding fees per month during school holidays. We knew we didn't have that kind of spare money each month to spend on these fees, even if we could work out the logistics of how to make it work.

To make matters worse, the hospital showed no sympathy towards Joan's situation (so much for NHS family friendly policies) and gave her six months after returning from maternity leave to conform to the new system of two day shifts per week. If she failed to conform to this policy then they would take disciplinary action, which would go down on her Human Resources record for all future NHS employers to see. We knew we had to act fast but what should we do?

Well, it was obvious that one of us would have to stop working - but that would cause an enormous financial strain. Our (fixed rate) mortgage was relatively cheap at £935 per month, when the going rate to rent a similar house would cost you £1200 per month in that part of London. But with our bills amounting to at least £1300 per month then it would be a real struggle to bring up our family on a single salary. Joan didn't want to stop working (she loves A&E) and I was no longer enjoying my job at STFC; so I had an idea.

I had lived in London from the age of 19 when I came down from Bradford to study at University. During those 37 years I had lived in five properties that I "owned". So I'd accumulated a resonable amount of equity in our Hounslow home. One solution was to sell up and move to a cheaper part of Britain. I could give up work and look after the kids (since I was the only driver in our family and was looking forward to retirement and looking after the kids) and Joan could continue working as an A&E nurse.

Joan said she wanted to be within easy reach of her friends in London, so we got a map and looked at the M4 motorway. It stopped in South Wales, so we looked for houses between Newport and Swansea at the weekends, staying in a Bridgend Travelodge for just £35 a night for a family room. I was looking for a house near a Special School and the local train station - so Joan could get to work.

House prices were extremely cheap by London standards. In the end, we found a five bedroom Victorian house with two large gardens and a beautiful view of the Neath valley for just £184,000; that was the cost of a one-bedroom starter flat in Hounslow.

So we moved to Neath in South Wales on 8th May 2014 and this is where we now live. The plan has worked and we have a much less stressful life. As an added bonus, we discoverd some of the largest sandy beeches we have ever seen just next door to Neath. However, just like in the Lake District, Neath gets a lot of rain because of the hills, but we have some beautiful green valleys!

I am voluntarily retired, looking after the kids and our home. I haven't missed my old job  for one minute and now I use my computing skils to help organisations like Joan's local Catholic Church, my Quaker Meeting and the RTS Support Group in the UK. I also started a local filmmaking club called Neath Filmmakers.

Joan does Agency work for the NHS around the whole of South Wales. Agency work gives her the flexibility she craved for in the NHS. She phones up early on Monday morning and tells the Agencies which days she's available for work; more often than not she gets those days. The pay is better too but some of this extra money must go towards a pension.

Some of her Filipino friends in London were intrigued by what we did and followed us to South Wales. We all have a much better lifestyle as a consequence.

The moral of the story is this: when life gets out of control, be brave and take those big decisions in favour of your family. In our case we are much happier and stress free following our decision to move, but you need to make the decisions that suit your own circumstances; and it pays to think out of the box sometimes.

Wales in not without it's problems. The NHS is very short of money and it takes twice as long to be seen by a consultant than in London. This has an impact of all services, including those for children with special needs. This is the topic of my next post: Maria's Special Educational Needs Statement.

Maria in November 2017

Four years have passed and I haven't written in this blog. A lot has happened since then. Let's give you an update. This will give you some idea of how Maria has progressed since 2013, when I was concerned about Maria's communication (she was five years old at that time) and thinking about signing as a long-term solution for Maria if she never learnt to speak properly.

Well, the good news is she has learnt to speak, not fluently. Here English is broken up into short phrases but she can express herself quite well.

What's even more surprising is that in the last year she is starting to show signs of being able to read. She brings home simple reading books from school and can read them to us. Just short simple words but at least she now knows she can read and it gaining confidence. When you consider that Maria has been flicking throught books since the age of two, wanting to read the words, then this is a most welcome development. Like me, she loves her books.

Physically, Maria is a remarkably healthy young girl. She is nine years old and developing physically. When she reaches the age of 11, she will go to a secondary school in Britain. We are busy selecting the best school for her.

In Britain, a child with "special needs" has a Statement of Special Educational Needs. This legal document describes Maria's condition and what help she must have from her school and supporting services (e.g. Speech & Language Therapy, Occupational Therapy). The system in Britain is changing. England has changed the system and no longer has a Statement; they have a new way of doing things that I haven't yet understood. Wales, still uses the old Statement system, which is lucky for me because I know how that particular system works.

I'll tell you more about what has happened in my next posts.