From my last entry you might think I’m very mellow about how the D.C. system is progressing. But having the right long-term goal doesn’t mean that all is well in the here and now. This still is a system that is falling well short of making person-centered planning, much less person-centered implementation, real. Much of the time the service coordinators and provider staff are chugging along, holding the meetings they need to hold, doing the paperwork they need to do, making sure procedures are followed as their organizations demand. Getting the different actors to come together and coordinate around the needs of a particular individual is a different kind of challenge, and too often secondary.
When our son first began receiving services in June, there were many meetings that had to take place in a short time. This was even more true given that his annual Individual Support Plan (ISP) was due for revision in early July. DDA and providers whipped into action, scheduling meetings at the times most convenient for them, then “inviting” our son and us with little or no lead time. I pulled myself out of my sick bed, and my husband reorganized his work day, in order to accommodate their timing. Worse, they had no understanding yet of our son’s anxieties about meetings, and we had to watch him grow increasingly overwhelmed as people peppered him with questions and talked over one another. In one particularly challenging meeting he left the meeting with an aide and took hours to calm back down.
What left us even more amazed was that in the planning process, he was treated as though he was born the day he began receiving DDA services. Everything we know about our son’s first 21 years, all the information shared by the school he was attending until mid-June, were set aside while the first impressions of staff during his ten days with them were taken at face value. This institutional arrogance, even if unintentional, was infuriating and did not serve him well. We had to be assertive, and more, in order to get anyone to pay attention to what made him tick as a person rather than making instant assumptions based on little information.
It’s also taken tremendous effort to get his two providers to work well together. Early days were full of arguments over logistical issues such as meeting points and times for his “handoff” between supported-living and day services. And establishing any time, ever, for him to be with family rather than providers during a weekday for medical or other appointments has necessitated endless negotiation, while last-minute cancellations of his day services have occurred with annoying frequency. And heaven forbid that both providers should use the same calendar to avoid scheduling conflicts.
The “bubble” within which DDA and its service providers operate is so self-contained that they scarcely realize anyone exists outside its boundaries. We’re still struggling to get his supported-living provider to realize that our son’s doctors might not be immediately available at whatever time they choose to telephone or want to call a meeting – or to get anyone to imagine that his father or I might have a competing work or other priority that prevents our immediately jumping when they say jump. Somewhere behind the scenes is probably a demand from DDA of which we’re not fully aware, but this only serves to prove that the requirements are rolling out from DDA rather than keeping our son at the center. We also still wonder, given the limited pool of 2000 or so people that DDA supports, how he will be able to maintain contact with his few social contacts outside that very restricted pool, make new friends, or someday live with someone who isn’t also living inside this bubble.
Even realizing that our son is doing remarkably well within today’s constraints, these are tremendous hurdles that loom in the future for people with disabilities in D.C. and elsewhere.