Even without a child in school anymore, fall is one of my busiest seasons. But although I haven’t posted to my blog in a month, I’ve been thinking hard about how things have unfolded over the past year. It’s actually been over a year - 16 months since my son began receiving services from DDS and 14 months since I started my blog. But even if my timing’s a little off, the point is that it’s time to take stock. In this blog post I’ll talk about where things stand for my son and our family; in the next, I’ll talk about policy issues. And sometime soon I plan to post a page of acronyms to help you wade through the alphabet soup without having to go back to earlier posts.
So, on the personal front:
- Supported living. You know if you’ve been reading my blog for a while that our son recently transitioned to a new provider agency for his home support when the agency we’d chosen in 2014 sadly left D.C. after a little over a year (“Sometimes It’s Personal,” 8/4/15). It’s too early to make a firm judgment about the quality of his ongoing care, but I can say that the promise of continuity hasn’t come true. The new organization has changed the entire management team overseeing his apartment and his ISP, including one direct support professional (DSP) who was especially close to him. Fortunately a few of his DSPs remain the same – for now – although this is small comfort since it could change anytime, as we’ve just been reminded. Still, we believe he’s safe and has staff who mean well by him, and he has a reasonably compatible roommate as well. We just wish we could rely on the promises made by both DDS and the new agency about a "seamless" transition.
- Individualized day services. IDS was a new option last year when our son began receiving services in DC. Our experience is a clear demonstration of the difficulties this day program has had in delivering for the people who’ve chosen it. It was originally intended as an alternative to work or other fixed-location day programs for people of retirement age who still wanted to be occupied productively during daytime hours. Increasingly it’s also been chosen by people such as my son, who are transitioning from school and still in a period of exploration befitting their age. Over the past year his IDS programming has helped our son get to know the D.C. community again, and better, after a four-year absence. He has had a caring and sincere community navigator, and has sometimes had a companion who has obliged him to develop skills of compromise and collaboration. However, our son needs an individualized but structured program of day supports, and the only structure he’s had so far has come from the courses our family has identified and enrolled him in. Given the number of daytime opportunities available, and our own efforts to bring options to the provider agency’s attention, we’ve been hard pressed to understand the lack of creativity shown in developing an individualized program to address those needs.
- Skills development and employment. On this subject I refer you to my earlier post (“It’s About Work,” 8/21/15) which describes our discouraging personal experience with trying to cut through the bureaucracy and get the support our son needs to prepare himself for competitive employment. A ping-pong match between DDA and RSA isn’t the way to help a person move forward in life.
Someone who’s been a very good friend to our son and our family told me a few months ago, “You don’t know it yet, but you’re at the beginning of a long process.” I begin to understand what she meant. But I’m an impatient person, and I’m continuing to push. I hope you will, too.