We had our first transition meeting. It was...not inspiring. I left feeling a bit on the defeated side while oddly pumped up to change the world. Yes I am aware that changing the world is not going to happen, but this type of meeting just gets me in that mind set. It also made me teary. Literally. I hate when that happens.
Basically, what I found out at this meeting was what I had already heard from other people who have children in the adult system (but was hoping I had misunderstood). At this time, RJC lives at home and we are planning for that to continue, so we are looking for an adult program that replaces her current school program. She currently has programming for about ten hours per day. Adult programs are about six hours per day. A bus transports her to school. Transportation may or may not be provided, depending on (mostly) her budget. There is no educational component and there is nothing that she is "required" to do as she is seen as an adult who can make her own decisions. In other words, if she refuses to participate in work or whatever activity she has scheduled, she does not "have to" participate. Once she turns twenty-one the programs are set up for her as though she is chronologically twenty-one years old (with a few supports) and not developmentally a seven year old (or a two year old, or a twelve year old, depending on the situation). She currently receives speech therapy. Speech therapy is not generally offered at an adult program (nor is Occupation Therapy or Physical Therapy). There is currently a Board Certified Behavior Analyst who works with RJC. We probably will not find a program that will have a BCBA. In fact, from what I am hearing, the whole behavioral issue is going to be a big question mark. One of those things that "varies from program to program."
As to my questions about how these programs are overseen and by whom, how staff are trained and the minimum requirements for them to be hired, how the State of Ct decides to fund a program etc...those are questions I need to ask RJC's caseworker and the various programs when I visit.
I don't think I'm asking for too much when I think about what I want for RJC. I want her to be safe, to be happy, to be surrounded by people who understand and appreciate her. I want her to be able to spend her time at work being challenged to her potential and using all of the skills we spent twenty one years developing (along with many, many professionals who went above and beyond to help her). I want her to look forward to going to her program each day the way she looks forward to going to school. I want her to have leisure time with peers her own age and an opportunity to try new things and go new places.
So, what now? Well, I need to get answers to some very important questions (see paragraph 3). I need to start looking at programs and figuring out what will work for her. I need to figure out how to sew together a few programs together, if necessary, to be sure all of her needs are met. Most painful to me, I believe I need to get some politicians on board - they need to understand the disconnect between school age years and adult programs and then they need to help fix that disconnect.
We are on our way. It's only the start of November and I have about eight more months to get this all figured out for RJC. Eight months. Less than a year. Yup. I see another sleepless night coming. And so it begins...for real.
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