This week we are sharing a series of blog posts written by author and mother, Viki Ainsworth, who shares her experience of her daughter Tilly’s transition from children’s services to adult’s services. This is part 4, you can read part 1 here, part 2 here, part 3 here and part 4 here.
Stay tuned on our community Facebook page and Twitter account for each daily blog over the next week. You can also listen to a podcast on this topic recorded with Viki here>
The College then invited the students who were leaving in the summer, and their families, to an information evening with representatives of all the companies and departments who would be involved in transition. It was a revelation, not least because no other parents had any idea what was going to happen either. This was somewhat reassuring, I had thought it was just me being somehow willfully ignorant, but also rather depressing to know that there was no system set up to help families through this period of change.
By definition most of our children with additional needs are not good with change and we, as carers, know how much time and effort it takes to manage any transition in routine and activity, so to be faced with a blind jump off a cliff as opposed to a team-led gentle stroll down a different path, was unbelievable. All this panic and distress must happen every year with everyone facing the same leap into the unknown. The fairly new 0-25 team from County did admit that the idea behind 0-25 was to work towards a seamless transition but that it hadn’t worked yet. So we were all left fighting for ourselves as usual. I almost felt sorry for them that evening as all families bombarded them with questions and demands for solutions.
This same evening, as we were talking to a manager from County, the team from College admitted that they had lost our daughter’s notes from her EHCP review, the one with just me and the tutor, unable to make any decisions…. So we had to set up another one. Some time had past so the statutory timeline that had been quoted at me for the previous EHCP standing was suddenly miraculously moveable. Sadly not because I had requested it be redone, but because of their incompetence. But it gave us the chance to have a full review and get the relevant people on board.
We eventually had eight people in Tilly’s review – a person from the Education Department to tell us that there was no way my daughter would get any more years at college; we had Tilly’s tutor, myself, Tilly, Tilly’s carer and two people from the social care team, one of whom was a very lovely student with whom we had a lot of interaction post meeting, but of course she moved on and the communication stopped. To this day I haven’t seen a copy of Tilly’s care assessment, which is what, it turned out, we were doing that day. It was a comprehensive meeting covering all of Tilly’s needs and hopes for the future. But the constant was that I had no idea what was available to Tilly post college and the people in the room still couldn’t tell me. I don’t know if it’s because they’re not allowed to be seen to endorse one particular company over another, but if companies are offering services to young adults with additional needs then presumably they’ll need to be verified by county, in which case why can’t they keep a list of the options?
I did come away from the meeting with the feeling that it was up to me to sort Tilly’s post education life out. Which is fine, I’m her mum, that’s my job. But it constantly felt like I was reading a book with blank pages. No one could give me any perspective on it, no choices, no guidance, which was frustrating and frightening. The responsibility of making sure your disabled daughter is going to have a fulfilling and safe life is huge. While we do it for all of our children there comes a point when they are supposed to grow up, move out and become independent, responsible adults, but to know you have to do that for the rest of yours and their life is a different scenario entirely and it can get completely overwhelming when no one will help you with it. The fear, the isolation, the panic for your children’s wellbeing, is horrendous.
Tune into the blog tomorrow to read about how Vikki found provision for Tilly post-college.