Our Fragile X/SEND Story

We, Katherine & Steve Watts, do hereby give consent to Action 4 SEND to share our story below publicly for the benefit of others and all information herein is accurate.

This story spans 13 years from 2007 until the present day (January 2020) and instead of the kids’ names they are mentioned by their first two initials.

Our kids were diagnosed with Fragile X Syndrome back in 2007 when we were living abroad.  They were then aged 3, 6 and 8, a boy (JC) and two girls (EM and ED).  Since there was no help for them there, we decided to relocate back to the UK, where my husband is from, and arrived back early April 2008.  The Statement process was started by the local school and seemed to go smoothly, however, once the Statements for the two girls were issued we soon discovered we had to fight to get provision. 

Each of the children did have a TA in the classroom, but as nice as they were, neither was trained in anything, they were just mums of kids at the school.  JC had two, thankfully one of which knew was she was doing as she happened to have a disabled sone.  The girls and their brother were subsequently diagnosed with AD(H)D.

In 2012, our eldest finished primary school and the decision was made to send both girls to a private SEND placement for moderate needs.  The local SEND placement was not appropriate for them for several reasons.  EM was in year 5 but we knew, if she was struggling with year 5 already, year 6 would finish her off.  The SEN manager who attended the meeting actually sat back in his chair, crossed his arms and said, “You’re on your own, then.”  we didn’t really know any better then, and it was well before the new Regs, Code of Practice and Act came in (2014), so I saw little chance of being successful if we tried to contest this.  I was also told by a SEN solicitor that the LA would say it wasn’t “justifiable use of public money”.  Thankfully my mother stepped in and helped us.  

At this new placement, the girls enjoyed 8 and 7 years respectively of a nurturing, fully supported education, which has now set them both up for college.  They had much smaller classes, 1:1 maths and english and SaLT (individual and group). 

JC, in the meantime, was not so fortunate as to be able to cope at the placement where his sisters went, so after 3 years in mainstream primary, we sent him in 2013 to a SEND placement out of county.  While I had been to visit the local SEND provision, after I had seen the one out of county, it was, as they say, a no-brainer.  I told the SEN Officer (the same as previously mentioned) that he had to make it happen, which, thankfully, he duly did.

At first, at this new placement for our son, things seemed to go well.  However, it wasn’t long, in 2014, when the new Code, Regs, Act and EHCP transition came in, that it all went to hell in a hand cart.  I received a phone call in October of 2014 from the SaLT saying that our son no longer needed a SaLT and that he would be fine with class based intervention only.  Despite all my objections in emails and at one meeting after another, my concerns were fobbed off with patronising nonsense.  When I requested evidence for their decision, none was forthcoming, just more patronising nonsense, through which they thought I couldn’t see and to make me go away.  

Later they assured me that there would be no formal referral process for JC to be reinstated, but this turned out not to be true as I found out about a year later when I tried to ask for reassessment.  They flatly refused, informing me that they did not do assessments for Annual Reviews.  This same stance was maintained year on year, even at the 2017 Annual Review.  

An OT said that they didn’t routinely do reassessments, that JC was benefitting from the class based intervention and the reports that were done to discharge him were still relevant.  If I felt that his needs had changed I had to provide detailed evidence to support an application for reassessment.  Clearly a double standard here. 

After the 2017 Annual Review, the LA took 7 months to get us the draft, clearly exceeding the statutory time scale.  Additionally I had to chase and chase to find out what was going on, while emails were consistently bouncing back.  When someone (let’s just call her Liz) rang me, she ‘apologised’, informing me that the person who had been working on the draft left and failed to pass anything on.  

When the draft finally arrived, it was full of blatant cut and paste falsehoods.  The following months were again taken up with chasing and emails bouncing back, while I tried to get some vague wording changed.  When the LA finally did get me an answer it was the end of summer term.  They said I couldn’t get this changed, that the request had to come from school.  

Following the summer break, I went back into fight/chase mode, which finally culminated in a meeting on 1st November 2018 to discuss reassessment of our son’s needs.  During this time, I had the opportunity to meet with  a friend from the SENDIAS team and with SOS SEN!  Both informed me that the EHCP wasn’t worth the paper on which is was written.  More than that, it was unlawful and violated several sections of the Code, Act and Regs of 2014. 

After the meeting, Liz (from the LA) said there looked to be grounds to request reassessments and she would go back to her manager.  I informed her that if we didn’t get a positive answer, I wanted my right of appeal, i.e. Tribunal.  However two days later she came back saying that “according to the Code” it was school’s responsibility to request these…which brought right us back to square one:  school would have to go to their borough’s NHS therapy service who would – as they had always done – refuse. 

Nothing whatsoever happened following this, so I requested that Liz finalise the EHCP so I could have my right of appeal.  Lo and behold, shortly thereafter, on 21st November, my son’s teacher emailed me to say that he had heard from the therapies lead, who had heard from the therapists, who said they would reassess if he filled out the form.  I instructed him to go ahead, knowing that we would still get our own independent reports, the first of which was already in the works and all of which would be far better than anything the school therapists would do (which would be to recommend our son remain discharged).  I filed Tribunal forms in early December.  

What followed was another 7 months of roller coaster Tribunal process during which I scrambled to get all the independent assessments and reports, the hearing was postponed at least 3 times (once by us), the LA promised to follow up with Social Care, but nothing ever materialised, no other assessments were done on their part and we even began looking for other schools for our son.  

I missed the Supplemental Appeal Grounds deadline in February as my mother (who lives abroad where I was born and grew up) had been severely ill in hospital.  It was shortly after this that I brought an EHCP/Tribunal service on board, to manage the case.  Evelyn was a godsend.  Sossen were amazing, as well and Eleanor took my Supplemental Appeal Grounds draft and made it ten times better. 

The final hearing date was 25th June.  On the Friday before, our Solicitor, Tracey, had a phone call with the LA’s legal rep, Sairah, during which they agreed the last few things in the Working Document.  We went into the weekend thinking we’d finally done it, though I did have a niggling feeling…On the Monday, the LA went quiet.  Sairah kept telling Tracey she was chasing them, SENDIST were ringing Evelyn asking if they could vacate the hearing because they understood all was agreed.  I had to hold off our witnesses, the OT and the SaLT, but finally, on Tracey’s advice I let them go at around 4/4:30 that afternoon.  

At around 5:05 that afternoon, Tracey rang us and she was fuming.  The LA had finally come back about 10 minutes before, saying that there were other issues with the Working Document they and the school had.  This meant, basically, that the ‘deal was off’.  The hearing the next day, instead of being a mere brief formality, was now going to be a fully contested hearing – but without our witnesses.  

At the hearing the judge, a Mr Hunter, asked why were were convening as was everything not agreed – to which Tracey answered that we had thought so, too until end of play the night before.  No one from the LA showed up so, we ended up having to hash out the whole Working Document from the start to finish with Sairah, the legal rep.  This took all day, plus which we had to wait while Sairah went through everything again on the phone with her client. 

The LA tried to draw it out even more by trying to contest a few words (of which Mr Hunter was having none) and one other pupil to adult ratio.  When it came to get these last points agreed by the LA they were suddenly unavailable and “in a meeting”.  Mr Hunter strongly directed Sairah that she had ten minutes to go out, get someone on the phone and get agreement. 

We walked out of there at about 4:10 that afternoon with a fully signed Working Document.  We had finally done it!

Or had we?  By September when school went back after the summer, nothing had been done and none of the specified support detailed in the EHCP was put in place.  Again we had to go into fight mode.  We threatened pre-action letters and Judicial Review.  It took until after half term to get all provision in place.  Our son had, by this time been without therapies for 4 years. 

In the meantime as well, we filed a Wasted Costs Order, but were flatly turned down.  We also emailed complaints to the LA, which was also badly handled. 

As I type, our LGO complaint is ongoing, though the LA now seems to have hijacked it in their own complaints system and have twice tried to tell us they consider the matter closed.  They will not be getting off that lightly. 

In closing, and I am sure there are others with whom this well resonate, we still feel an intense sense of injustice.  All our reports and the fact that the Working Document was agreed at Tribunal we feel are proof that our son should never have been discharged in the first place.  Yet there still seem to be no consequences faced on the part of those responsible either at the school’s borough’s therapy service or the LA. 

The result is that we have come to be utterly cynical and distrustful of anything the LA says and does.  Governments and Local Authorities are there to up hold the law and protect the people.  But after what we have been through, we feel that we have to protect ourselves from the Government and the Local Authority. 

I would like to add, having now filled out the options below, that I was diagnosed with Fragile X Syndrome shortly after our arrival back in the UK.  However, I already had a very strong suspicion right after the children’s diagnosis came in.  A great many things became clear.  I do have trouble processing, which is why I have always been a very slow reader and continue to struggle with mundane documents such as contracts, Ts & Cs, etc.  Additionally I have difficulty remaining focussed and sometimes catch myself getting distracted.  Because of this, I found the tribunal process fairly difficult as it can be quite complex.  We hired an advocate to help and I also found myself struggling to retain all that she was saying during our phone calls.

Thankfully our marriage and finances are intact, though the Tribunal did take up some of the savings we had and had wanted to spend on more home improvements.  We both feel that it is very important not to let our struggles with SEND divide (and conquer) us, that we remain a united front.

Should Action 4 SEND like to ask any other questions or need more information, please don’t hesitate to contact me. Jenny Loughran has my email address.

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  • : 15, 18, 20
  • : Boy and two girls
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  • : Fragile X Syndrome
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  • : They have had EHCP for 11 years now , since Statements
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  • : Secondary and post 16
  • : 1 out of county School, 2 college (1 out of county)
  • : School is specialist, colleges mainstream w/ special support
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  • : yes
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  • : no

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