It’s been a while since I blogged and I have no better reason to offer you than busy-ness of our life. Christmas came and went. Life has been hectic, but it, we have gained some routine and normalcy we have so desperately craved for years.
2018 was a busy year with some amazing gains (Freya starting nursery, us travelling abroad, me starting work), but it wasn’t without its challenges or fights. One of the big ones was getting Freya’s Education and Health Care Plan (EHCP) in place and I want to share our experience in hope it helps others in a similar situation and to highlight some of the inequalities ingrained in the process.
EHCPs are plans put in place by Local Authorities to specify the level of support and help an individual child needs to access education. It may be 1-2-1 help, therapies equipment or placement at a specific or a specialist school. The plans are (supposed to be) detailed and legally enforceable.
Our EHCP journey started generally positively back in the autumn of 2017. The assessment (the “will we or won’t we?”) stage went rather smoothly and the decision to issue a plan was made.
Then the problems started. A deadline after deadline was missed. The (first) final plan was issued with some serious mistakes in it. Whereas it agreed Freya needed 1-2-1 supervision for her health needs, it did not make any provision for the absences of 1-2-1 or break times. This meant that when Freya’s 1-2-1 was on ill or on holiday Freya rarely could go to nursery. It also meant that the whole of spring and a good chunk of the autumn 2018 Freya could only attend nursery for 3 hours a day. Something that clearly would not work when she starts school later this year. But the most glaring mistake was that the caseworker did not understand the difference between the terms “tracheostomy” and “gastrostomy” – the plan only required people looking after Freya to be gastrostomy trained.
For those less familiar with these terms tracheostomy is the small plastic tube Freya breaths through. Gastrostomy is also a small plastic tube, but situated in her stomach and used for feeding her. There are very good reasons why anyone looking after Freya needs to be properly trained in operating both of these tubes and competence in one does not qualify you in competence in the other.
I tried explaining this to the Haringey. I told them that if Freya’s breathing tube came out she would die within minutes if there was no one trained to do an emergency tracheostomy change. To contrast, I even explained that on the other hand if the feeding tube came out Freya might have to pop over to the hospital, She might miss a meal. But it would be very unlikely to cause serious injury or death. But they didn’t care. The case worker told me her manager was happy with the wording so if I had an issue with it I could take them to the Educational and Special Needs Tribunal.
So I did. But before I tried to resolve it by having my lawyer to write to the Head of Children’s Services along the lines of “are you for reals?” – the whole situation seemed like a bad version of the Little Britain sketch of “computer says no”.
Faced with a letter from a law firm, Haringey made the concession of correcting the confusion between the medical terms. But, defying any logic whatsoever, they insisted that whereas Freya’s tracheostomy trained one-to-one during nursery hours was an educational issue, during the break time it wasn’t, so it could not be written into the plan. (This argument, by the way turned out to be such a ridiculous one that it was not even mentioned by them after proceedings were issued. It was simply misinformation with the aim of fobbing me off).
I’ve been around the block a few times and I know a bully when I see one. And Haringey SEN team seemed to have a good few of those. So I sat down, read the 300 odd pages of Code of Practice for EHCPs and drafted my appeal. I trotted off to the post office and sent out my 100+ pages of pleadings and supporting evidence.
So a few words about the SEN Tribunal that hears the cases relating to EHCPs. As there is very limited legal aid available the Tribunal proceedings are designed so that parents who do not have access to a lawyer can do the process themselves. This means that they are more relaxed about procedural rules than the normal courts. The process is designed to encourage parties to come to agreement on points rather than having the Tribunal decide every single thing (though it will if agreement is not reached).
Early in the proceedings the Local Authority is required to prepare a working document of the EHCP. Both parties then pop their desired wording on it, which in turn should help parties actively work together to find common ground.
Haringey did not do this until very late in the proceedings. Nor did they comply with any of the procedural deadlines. They appointed a transport manager (!!!) to deal with the legal case, who had poor understanding of the issues and even worse one of the law. Up until the hearing I had no idea what Haringey’s arguments were in relation to some of the points raised. She ignored pretty much every email I sent. Whenever she could she tried to throw mud and blame shortcoming on me – a tactic that I now know is widely used by Local Authorities trying to escape their legal duties. At no point did she try to hear us out or find any amicable solution.
I am no stranger to the Courts. I have worked as a dispute resolution lawyer most of my adult life. I’ve done tiny little cases getting my Claimant £500 compensation, to working on 30,000 claimant group action, to assisting in a billion dollar litigation case. I’ve been to the Court of Appeal more than once. I’ve done arbitrations, mediations, negotiations. And I have had some formidable opponents and some extremely challenging ones.
As lawyers we fear less dealing with opponents that are brilliant and know they stuff: In most cases we are trying to found a pragmatic solution for our clients’ problems, not just to fight and having a reasonable and professional opponent makes all of that easier. The opponents that make our hearts drop are the ones who exhibit little competence and knowledge, but who pigheadedly dig their heels onto the ground in hope if they refuse to move in hope that their opponent will give up. A tactic widely adopted by toddlers, dodgy dictators, and, unsurprisingly Haringey.
And sadly, similar stories play out around UK every day of the week. The Local Authorities, who are legally obliged to have the child’s best interests at the centre of their approach, do exactly the opposite by adopting adversarial, bullying and delaying tactics against parents. What really saddens me is that Haringey refused to engage in finding any solutions to ensure that Freya could attend nursery properly knowing full well that there was a little girl with a serious life threatening and limiting condition missing out on her life. What happens to children whose parents don’t know how to challenge authorities or who don’t have enough strength to fight? They get failed. They miss out.
So the Tribunal date came with Haringey having not done any concessions. The transport woman came with her own gang – a commissioner from the CCG, social services manager, a matron from Whittington NHS Trust – and a fancy barrister to represent them. Their excitement seemed palpable – these professionals, who were all well aware that Freya had been missing out on a significant number of nursery days because of poor planning on their part, seemed confident and excited about prospect of beating me in Court.
But their didn’t. In fact they had to concede on most points. Others they lost. There were even one that their barrister had to halt the proceedings to take her clients out and come back with total 180 degree turn around in form of a big, fat concession.
It was a long day, it was a stressful, but it was a successful day: We came out with a wording far more robust that the one I was seeking when I first got told to bugger off. And afterwards, Freya’s godmother (who deserves a special shout out for helping me through the whole process including attending the Tribunal with me) and I went to a bar across from the Royal Courts of Justice and got a bottle of champagne. It tasted good.
I could go on for pages and pages about how I think the process could be made better, but that is a blog entry for the day. I will just finish off by saying that if you are in middle of your own EHCP saga don’t despair – good things come to those who not only wait, but who persist.