A few weeks ago, I was at a meeting with, among others, a woman (G) whose son (T), in his late teens with severe disabilities and superb gifts, was seeking assistance of the type our system was always intended to provide. G and T wanted support which would follow the choices T makes and the goals he seeks to attain. They wanted humble agency(ies) to provide individualized services. When Assemblman Frank D. Lanterman proposed the radical legislation that created California's community-based system as an alternative to institutionalization he specifically envisioned a system that answer this call. In the 35 years since Governor Reagan signed the Lanterman Developmental Disability Act, every advocate calling for support to our system or opposed changes to it have argued that Californians with developmental disabilities are owed exactly what G and T have asked for.
And yet, as of meeting G, she had been unable to find what is so clearly promised to her son. It's a disappointing moment that calls a lot into question.
How can we, every time a reform is proposed that we don't like argue the moral necessity of providing individualized, client-centered services if people who want them can't find them?
How will we demand the State pay the full cost of a community-based system when the $3 billion dollars already provided by the State and Federal Governments seem to be buying something else?
What does California's Community-Based system of support actually provide and why isn't it what its supposed to be? Can we get there from here?
To discuss the last question, I'm confident that we can get there from here. I think the system is readier to meet clients where they are and follow them than the number of conferences on bridging the gap gives it credit for. Most service providers and staff and many Regional Center personnel know how to listen and be humble and try things they don't know how to do. There isn't much else I would see in terms of needed capacity.
There must be barriers, though. When I met G, all she and T were looking for was basically to see the Lanterman Act enacted. And yet, G and her advisors were having trouble finding a ready provider. Wanna know what I think the barriers are?
I think the system designed as an alternative to institutionalization retains relics of exactly that system. The whole system of accountability is designed to work best when the Regional Center is in charge of the provider who's in charge of the client. We can talk all we want about clients owning their services, but as long as regional centers can punish providers for the natural consequences of client's informed choices (or the preferences of the family,) providers who serve humbly are resisting not following the natural design of the system.
There are other relics. What many in the system call the "big three" when they talk about services- i.e, residential group-home, day program and transportation is probably the most common service configuration. Why is it so common? It's probably the cheapest price-point for providing 24-hour care. It's also, essentially an institution without walls. It matters that there are no walls, but it is interesting that the community-based system so often emulates the experience of the institution.
The true, often hidden, brilliance of the community-based system was that it would allow individuals with disabilities to select their own preferred balance of risk and reward. If any law or public administration interns are reading this, a great project would be to review Titles XVII and XXII of California's Welfare and Institutions code to determine what percentage of the regulations bias DDS, Regional Centers, Providers and Clients against higher-risk solutions.