Almost a year since diagnosis, and after a tense wait, we have finally been sent a draft Education, Health and Care Plan (EHCP) for Tink! And I’m not totally sure how I feel about it.
I wasn’t even convinced she’d get one, based on what I see in various Facebook groups I’m in, where people with children who seem to have much greater needs than Tink have had to fight tooth and nail even for an assessment, let alone a plan. And now she has one, part of me feels elated! We did it! We have in our hands the draft of the document that will stay with her until she’s 25 and will detail all of her needs and how they will be met for several years to come. We have access to support and resources and, if we want it, special education (but I’ll come to that later…)
And then another part of me thinks, “oh. Special needs. My child has ‘special needs’.” And I think back to when, as horrible, unaware kids of the 80s, we used to run around our friends when we were taking the mickey for something or other, and we would shout “special needs! You’re special needs!” And I worry that, despite all my bravado and thicker skin and (over)sharing on social media about Tink and our life, that she will have this label with her for a long, long time to come. I really hope we’ve come a long way with awareness and acceptance in schools since my own school days, when children with additional needs seemed to remain unidentified by teachers, but were a lot more obvious to us kids. I really hope that the fact Tink has an EHCP, and, therefore, extra support and resources, doesn’t make much difference to her classmates, and that they’ll just accept that she’s Tink and that’s how it works. But I do know that kids can be cruel. And I know that I can’t wrap her up in cotton wool, and shield her from bullying and abuse. According to the National Autistic Society, over 40% of autistic children have been bullied at school, and I worry that having an EHCP in place will make this more likely. Who knows? Hopefully, in time, we can give Tink the resources (and bollocks) to stand up for herself if it happens. Hopefully…
The first we knew of our success in obtaining a plan was when I received an email from the new lady at SENAR (Special Educational Needs Assessment and Review service) inviting us and the professionals involved with the plan to a meeting to discuss it. Only, she’s on leave from today and the meeting was supposed to be happening tomorrow! So now it’s not until next month.
I was led to believe we were supposed to have a ’12 week meeting’ before the draft is issued, but this hasn’t happened. I think the idea of this meeting is to discuss what needs to go into the draft, but someone has helpfully put one together without us, which is, er, interesting!
The day after I received the enlightening email, the actual paper copy of the draft landed on the doormat. It’s a chunky beast! Lots of it we have seen before, such as the reports sent as evidence by the educational psychologist, speech therapist, Communication and Autism Team and school, as well as the evidence we, her parents, were asked to provide.
However, the most important sections in the plan are those that detail what her special needs are, and how they will be addressed, and by whom. This is the part that needs looking over very carefully and, I hope, picking apart during the meeting we’re due to have. We’re supposed to tell SENAR if there are any parts we feel need changing, adding or taking out. The thing is… we don’t really know! I think it covers most things. It describes her strengths and health needs, social care needs (not much there, thankfully) and, in greater detail, her special educational needs, broken down into categories such as communication and interaction, cognition and learning, and so on. These needs are then used to come up with the outcomes – both long and short-term (although the long-term is quite short term at this age!) These outcomes then determine the special educational provision that must be in place.
This is the section that I think we need to really watch. I have done some research (as I have a tendency to do!) and they are not supposed to use ‘woolly’ language such as ‘opportunities for’ and ‘access to’… which they have used several times in our draft! Instead, they have a legal duty to be more specific, so ‘opportunities for’ should really be replaced with ‘this will happen x times per week’ or whatever. I have a feeling I’m going to need to put my big girl pants on and get a bit stroppy!
And then, we reach the section that is so small in the document, but absolutely, monumentally huge in Tink’s future… school preference. As you may remember, we have already had the dilemma of which mainstream school to choose for our application. We finally made our choice, although it was rather a moot point in the end, as we had decided to keep Tink in school nursery for an additional year anyway. Now we have the plan, however, a whole host of new options opens up. Along with the draft, we have been sent lists of all the schools in the local authority: mainstream, independent and specialist. This document is even chunkier than the draft! And now we have to think about it all over again.
I have tried previously to make an appointment at a highly recommended special school that is quite local. I have been refused. (“Oh no, all the appointments for viewing have gone. You’ll have to call after Easter… Oh, sorry, but all the appointments have gone, we were inundated straight after Easter….”) Apparently, it’s harder to go and view a special school than it is to get a place in one! So, my question now is, how on earth are we supposed to decide (within 15 days of receipt of the draft, which we didn’t know we were receiving as we didn’t have the ’12 week meeting’ – ha!) which school we’d like named in Tink’s plan? Especially as we have no concept of what the inside of a special school is like.
I am going to be contacting SENAR to let them know that no, actually, we will not be making a choice on school within 15 days, as this is totally unrealistic given the circumstances. We can’t even discuss the draft with professionals until June, and I’d quite like their input on what kind of school they think might suit Tink best, seeing as they will have more idea than us. Then I’d also like to go and see one or two, if you please!
So, yes, we have the plan. I am fairly certain this is a good thing. It is. But it’s not over yet. Not by a long way!
To be continued…