I would like to have the time to write more often and something more comprehensive than this, but life admin and especially the admin involved with trying to get anything sorted for Katie is monumental at the moment. We are making baby steps but still have a long way to go, as ultimately her mental health has been plummeting for several months now and we are also still in limbo when it comes to a secondary school placement for September.
Everything revolves around the unholy trinity. The three P’s of processes, paperwork and phone calls. And people who don’t pass information on or call you back when they’re supposed to.
I’ve been trying to get hold of the secondary school the LA named since early March when they finalised her EHCP. I’ve dutifully phoned at the times I’ve been given and then told that the SENCO isn’t available. I’ve left my number for her. I’ve left my number with the main office. I’ve emailed. I’m yet to actually speak to anyone.
The SEN school we would like Katie to go to (and requested that the LA name on the EHCP) came and did a home visit with us, and then also invited Katie to go and view the school. They have told me that they think they can meet Katie’s needs and will give her a place if the LA signs off on it. I have no words to describe how much I hate our shitty SEN processes and how powerless they make parents. We want Katie to go to the school. The school is happy to take her. Job done. Except not job done because she still can’t go there unless some random person at the LA who has never met Katie decides to give it the green light, which I don’t hold out much hope for as they’ve done nothing but delay things and refuse help since we first asked for it.
I have submitted my paperwork to the tribunal to challenge the completely useless EHCP that the completely useless muppets at the LA wrote for Katie. It took me forever because there was so much from the assessment reports that they missed out and I challenged pretty much the whole EHCP. It also took multiple phone calls, promises of someone calling back, and several weeks to get hold of a mediation certificate. I only ended up getting one because on about the sixth attempt when I was told no one was available I said I’d sit on hold until someone was free because otherwise they were going to make me miss my appeal deadline.
The LA have agreed to fund Katie for 6 weeks of a horse therapy programme, which is great but also creates paperwork. More forms to fill in for the LA who said we had to set up a new bank account which can’t be used for anything else apart from the lump sum they’re putting in for the therapy, and forms to fill in for the stables.
A referral has gone through for Katie to have an initial session with the Mental Health Support Team specifically for her emetophobia. It’s for CBT which seems to be the only thing on offer even though people keep telling me CBT isn’t usually effective for autistic people, but we’ll give it a go in the hope that it does help, because the sick phobia is ruling everything at the moment. More paperwork.
The EBSA team made some suggestions to help Katie at Christmas, then ignored her for 3 months and didn’t check in again until Easter and seemed surprised that Katie still wasn’t in school and her attendance had actually got worse not better. Cue a sudden flurry of activity and a promise to bring in Alan the new team member to see what he could do. Alan deserves a blog post of his own and it’s on my to do list, but so far he’s spent several hours making appointments to see me, spending time talking to me, and I’m still not quite sure what he’s meant to be doing to help because actually I just keep having to take time out of work to see him and then nothing happens. At least half of the questions he’s asked me he should have already had the answers to as it was information I’d already spent time going through with two of his colleagues.
We were asked to attend a meeting between Katie’s current school (that she hasn’t been to since February), her new school (that we won’t be sending her to and are appealing against), someone from the LA (but they declined to attend), and the autism advisory team at the council. It was set for a date I was already scheduled to be doing a workshop to 200 year 12 students at one of our schools so I asked if it could be rearranged and was told it absolutely had to be this date, so I had to bail on work and arrange for a colleague to cover it. Only to find when we tried to join the online meeting that there was no one there….phoned school, no answer…phoned autism team, was told I couldn’t be put through to them as they all work offsite even though I phoned the number that’s given for them on the council website…tried the link several times and it still wouldn’t let us in…eventually gave up and went to work. It turned out we’d been sent the wrong link. Give me strength.
Hopefully at some point we’ll have a hearing date for the EHCP appeal, although I guess that will create a whole load more admin as well. I have so many thoughts constantly going round in my head and no time to get them out!
Mum life 