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.