info@action4send.co.uk

Our fight for reassessment/therapies

We moved back to the UK from Bermuda in 2008 following the kids’ diagnosis of Fragile X Syndrome, which is a genetic condition that affects the protein on the X chromosome. It results in mild to severe learning difficulties and autism.  For more information about FXS, you can go to www.fragilex.org.uk.  They (a boy and two girls) were then aged 3, 6 and 8.  The fight against the system started almost immediately to get the provision in the older girls’ Statements provided.

Once our son was of school age, the Statement was issued, but we had the same problems trying to get the LA to put provision in place.  We were still trying to navigate the system and we didn’t have the know how that we do now, so I just continued to write letters, which were answered with generic responses.

The girls eventually ended up in 2012 at private school in years 5 and 6  through to Y13, which the LA refused to fund, though they kept the Statements/EHCPs.  Then in 2013 we moved our son to a special school out of county. This is where the bulk of our story begins.

 All went well for about a year after our son started at his new placement, but in 2014 I was informed by phone call that the therapy service in the school’s borough had decided that he no longer needed a speech and language therapist (SaLT) and that he was to be discharged from the service in favour of an “integrated” or “class based” “therapy” delivered by the class teams.  I emailed my protests, I had meetings with them, but to no avail and our son was discharged in 2015. 

With each response they made to my emails they gave a patronising shpeel (for want of a better word) about the advantages of this new, integrated approach. Each year I came back from my feelings of defeat and hopelessness to request reassessments (surely this year they’ll do it), but all in vain.  Each year they refused, maintaining their stance that this “integrated” therapies provided by the class teams (who are not therapists and not trained as such) was the best way. They also maintained right up until 2018 that the old discharge reports of 2015 were still valid.  For 4 years our son went without any support or monitoring from and actual therapist. He was 11 years old when they discharged him.  He is now 15 1/2 (16 in October).

At the outset, when I asked for evidence to support their decision to discharge my son, they provided nothing, substantial, only saying that he was not responsive in sessions.  I gave them all sorts of strategies to try and overcome this, but they didn’t listen. When I requested of the then SaLT that she send me her session notes, she refused, citing data protection and said that she couldn’t just give them to anyone.

Each time I tried to request reassessment I was told that I had to provide detailed evidence so support my request, citing how I thought my son’s needs had changed. Clearly there was a double standard here.  Additionally, in the beginning, they said that I wouldn’t need to go through a formal referral if I wanted his therapy reinstated.  They said it all would be well and he would be seen.  Again, clearly, either things changed or this was an outright lie to placate me.

In the meantime, I set about finding private therapy but unfortunately was only able to get OT with the ex NHS therapist who had seen our son and the girls while in mainstream primary. All the SaLTs I contacted were either having babies or fully booked, even when I tried 10 months later.

In December of 2018 we filed for Tribunal, there being no other option, as the therapies service and LA were still not listening. Suddenly, however they decided that assessments needed to be done.

The hearing was in June 2019, but the process leading up to that was very stressful.  I had expressly, on advice, made it clear that if the LA were to send anyone to assess my son, they needed to inform me so that I could be there.  In April I found out that the EP had tried to go behind my back, she emailed my son’s teacher, saying that a certain day would be fine and that it was actually just an observation, so I didn’t need to be there.

About two weeks before the hearing, it seemed as if we had got agreement on the Working Document, but there was something about some OT wording that our advocate left in we didn’t quite get.  It took some time for her and our solicitor to talk us round.  

On the Friday before the hearing (which was to be 24th June), our solicitor rang me to say that she’d had a long call with the LA’s solicitor and there was agreement (the latter said that she didn’t see her client objecting to what they had discussed), therefore the hearing, because it was too late to vacate, was going to be a short formality.  

Unfortunately, on the Monday, our solicitor and our advocate still hadn’t got confirmation that the LA had agreed from their solicitor.  SENDIST, too were under the impression that it was all agreed and actually wanted to vacate the hearing.  At the 11th hour that day our solicitor rings us to say that the LA had reneged and that they now had issues with a few other things in the working document – that had already been agreed.  By this time I had discharged our witnesses, so we went to the hearing by ourselves with just our solicitor.

At the hearing, we negotiated the whole day, we got what we wanted, but it wasn’t over yet.  We filed for Wasted Costs, not just for Tribunal itself, but for all the costs we had incurred in getting private therapy for our son over those years and for all the reports we had to commission, each of which was concrete proof that our son should never have been discharged.  This was duly thrown out. 

Come the new school year, 2019, we discovered that none of the provision we had fought for had been put in place. It took more fighting with the LA, even threatening pre-action protocol, to finally – after October half term – get it all put in place.

While fighting with the LA, I also (in October of last year) filed a complaint with the Local Government Ombudsman (LGO).  When one lodges a complaint with them, one must give evidence that one has already complained to the LA.  This I did, citing the emails my husband sent the day after the Tribunal hearing to one of the heads of education at the LA complaining about our ordeal.  It took some time to get a reply from the LA, but still nothing really happened, hence the complaint to the LGO. 

The next thing we knew, LA had hijacked our LGO complaint and put it into their complaints system. They tried to conclude at Stage one, but we were not satisfied.  They tried to conclude at Stage 2, but again we were not satisfied.  The LA said it would not be appropriate use of public money to reimburse us for all our expenses.  Yet, they are quite happy to use public money for tribunal proceedings to deny our son the support he so desperately needed and to which he was legally entitled.  The case has recently been reopened at the LGO (obviously delayed by the current COVID crisis) and we have just received word that it will now be investigated.

The current COVID crisis has also not helped matters as our son was then off school for nearly 3 months.  Up until then he had only received 4 months of the new support in the EHCP. This is nowhere near enough, as it takes him some time to adjust to new people and routines.  The new Government “best effort” regulations have also given LAs the green light to do nothing at all.

When the new Code, SEND Regs and Act were brought in in 2014, they also extended the entitlement to EHCP up to age 25.  However, the government never funded these changes. Then, due to Government cuts over the last 10 years the system just crumbled. All services are understaffed, underfunded, and oversubscribed.

Parents and carers have enough on their plates managing their families and their children/young people’s needs/behaviours without having to also battle the system for support to which their children/young people are entitled by law – the Code, the Act, the Regs, and the Chronically Sick Act of 1970. The past 6 years since 2014 have shown that they are not worth the paper on which they are written.  They sounded great on paper, but there is no accounability whatsoever – anywhere.  LAs have carte blanche to do what they please with no consequences.  The whole system is rife with lies, corruption and double standards.

During this crisis, the Government has come out saying they need to help kids who have suffered anxiety, etc. because of the lockdown and not being in school. However this is all mostly geared to mainstream.  There have been children and young people with SEND who haven’t been in school for years because LAs don’t do their legal duty, yet Government has never come out in the same way to talk about them.  The new guidelines for returning in September are going to penalise parents if their kids are not in school. Again, this completely neglects those kids with SEND who may not be able to got to school one day due to anxiety or struggles with new routines/classes, etc.

We feel completely and utterly let down by our LA, the school’s borough, and by Government, who don’t seem to care one iota about our children and young people with disabilities.  They have shown that they cannot be trusted. 

  • : facebook
  • : 15, 18, 20
  • : Boy & 2 girls
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  • : Fragile X Syndrome
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  • : Not long in the beginning. Recently they have been at least 6 months late.
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  • : Secondary and college
  • : LA school (out of county)
  • : Specialist
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1 Response
  1. Thank you so much Katherine for taking the time to share your story.We know that your time is few and far between and also can either be emotionally draining to share or therapeutic.
    I resonated with everything you said and your right in terms of the Government being totally detached from our reality which has been highlighted during covid. We look forward to standing together with you whilst raising awareness to increase better understanding.

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