It’s been a while since my last post and for reasons that will become apparent this is because a lot has been going on and a lot that I didn’t want to share until I had some answers. I’ve spoken before about how every week seems to be a new battle to get what many would take for granted and how those battles only begin when you get that diagnosis and continue after every step. Every time we thought things were on the right track, or that everything would be better after x happens, we have come to realise that each battle isn’t a door you can close, it’s an endless corridor of challenges with officialdom, red tape and people unable or unwilling to do their job as a layman such as I would expect. So as you can tell, this isn’t going to be a happy story of success, but one I hope proves useful to anyone following us on the journey.
A couple of months ago I wrote about our visit to a special needs school . We were approaching the time of Victoria’s annual EHCP review and had already spoken to her school about her progress, what was and wasn’t working and what we could do to improve things for Victoria. The simple fact is that although Victoria is making progress at school, she is falling behind her peers. She is moving forwards (good) but not at the rate she could or should be (not good). But she is making progress all the same. Now remember that phrase – “making progress” – as it comes back to bite us later in the story.
EHCP
At the time of applying for, being granted then having to refine an EHCP for Victoria just over a year ago, we were assigned a case worker from the Kent SEN team. It was his job to ensure that the final EHCP was achievable, legally binding and agreed by all parties. He was our first port of call at the local authority and someone who would deal with the administration to ensure the relevant experts were consulted, the correct paperwork was filed and ultimately (I assume) it is his job to ensure Victoria began to receive the education she deserves. It was also a job that he did very badly. So badly in fact that I personally rewrote large swathes of the random words he had copied & pasted together to form this legally-binding document. His boss agreed at the time that we should have expected better. However, as painful as the process was, at least we had a single person within the local authority to contact if we needed to. You see, for anyone not aware, the process of getting a decent education for a child with autism or other learning disabilities is a 3-way battle between parents that simply want the best for their kids, the school that want to do their best but are hamstrung by budgets and red tape and the local authority. My belief a year ago was that it is the local authority’s job to avoid spending money. Or at least to not spend it where I want them to (my daughter’s education). And this is where the opacity of the process comes into play. I don’t care what anyone at Kent tells me, nobody can design a process so badly by accident. It had to be by design that it is next to impossible to get straight answers, basic funding and access to the education a child deserves. It was my belief a year ago that this was deliberate and I still believe that today.
Annual Review
So fast forward a year and after a discussion with the school we are broadly in agreement. The school can meet a basic educational need for Victoria but Victoria is struggling, falling further and further behind her peers and is at best coping. Nobody should describe themselves as coping with life although I know a great many do. But a 9 year old should not be coping. They should be thriving. Being the best they can be. Preparing themselves for a world of opportunity. If you are merely coping at 9 years old the future doesn’t look great. Something had to change and the annual review seemed like the right time to make those changes. We were advised by the school that they were limited in the extra help they could offer Victoria and it was agreed that we might consider a change of school for Victoria, to somewhere better suited to meeting her needs. Hence the visit to a special needs school back in May.
A date was set for the meeting: the school SENCO, Victoria’s teacher, the local authority (our case worker) and us were invited to a meeting at the school to discuss Victoria, her progress and her EHCP. And we all attended… except the local authority. They “never come to these meetings” apparently. As it turns out, whilst the local authority hold the purse-strings and have the ability to make or break a child’s future, they don’t have the inclination to attend these annual reviews. So the obvious question then is: how can we hold a fair annual review? We were going into that meeting on the premise that the school is doing all they can but Victoria’s needs are still not being met so we wanted a change of school placement for her. This wasn’t an easy decision to come to. Victoria loves her school, and everyone at her school loves her. We have no ill feeling towards the school and in an ideal world she would stay there and thrive. But in the real world we needed to discuss a change of placement.
And Kent don’t attend such meetings.
So the meeting was held, nothing new was discussed that we hadn’t spoken about just a week or so before and an action was taken by the school to write up the paperwork requesting a change of process. As far as we knew this was the correct process to follow.
Legislative Timescales
As I mentioned before, an EHCP is a legal document. A contract. And there are strict legal timescales that must be adhered to that are set in stone. The local authority MUST close off the annual review process by responding to our request within 12 months of the original EHCP being issued. However such legislation means little to our local authority and 12 months and 1 day after the EHCP was issued we were on there case.
Now chasing up progress on this review should have been simple. We had a case worker remember? We knew his name, phone number, email address and everything, so all we had to do is give him a call and request an update. He’s obviously pretty busy as he didn’t answer the 1st time we called and left a message. Or the 2nd. Or the 22nd… In fact, to this day I’ve no idea of the whereabouts or wellbeing of our case worker. I do hope he hasn’t had an accident…
What followed over the coming fortnight was a challenge of mental agility and willpower. We spent the next 2 weeks, calling and emailing our case worker, his manager and anyone else we could find associated with the pair. It got to the point where we knew where he worked and had plans to go to his office, refusing to leave until he acknowledged our request for information. I had visions of being on the 6 o clock news being dragged out of the building by police as Becs sat on his car bonnet refusing to move until we had a meeting with him. One way or another we were going to get answers from him.
Until, that is, we suddenly received an email from our case worker. Or, more accurately, an out of office message. He’d gone on holiday. Which was nice.
The trail hadn’t gone cold though. His out of office message contained another poor unfortunate fool’s name and contact details. They would be our next target. They would also refuse to answer the phone…
Over the following days we broadened our attack. Every phone number we had was called, every voicemail was left a message and then an email was sent to everyone we had tried to contact and many at Kent that we hadn’t been able to get a number for. I turned detective, using my Google-fu to dig our ancient org charts and freedom of information requests to find out who reported to who and who was responsible for what in the vain hope that somebody… anybody… could give us an update. At one stage we did actually speak to a real-life person at Kent who was able to tell us that Victoria’s case was with a new case worker as we had requested a change of placement. “Great, how were we meant to know that? Never mind… can we have their number?”. “Sorry, she’s off sick at the moment…”. Arrrrrggggggghhhhhh.
We have contact!
It comes to something when you get more responses from your MP (whom I’d been copying in on my emails since about day 7) than the person you are trying to contact but that was the reality of the situation. It’s easier to get a doctor’s appointment than it is to speak to someone about your daughter’s educational healthcare plan. A plan which had now missed it’s legislative deadline for review by some weeks. So it was a hallelujah-moment when, during one of my daily call-everyone-in-Kent-and-hope-someone-answers sessions that someone did answer. And not just anyone, someone helpful! She wasn’t the person I was trying to contact but she knew where she was and she would put me through right away! I’m sure I had aged several years by this point and the shock of actually speaking to someone who had Victoria’s case open in front of her got to me. You see, I was potentially on the brink of some positive news. Kent would obviously see that our little girl just needed somewhere better suited to her way of learning. They would understand that we were not asking for much, just the right school for our eldest child. The school supported our view so obviously Kent would too.
“I’m sorry Mr Wiggins, your application has been declined…”
Please click here for Annual reviews, EHCPs and the opacity of local authority – part 2