Monday, June 28, 2004

Why call for system reform?

There are really two perspectives that call for reform. The most important is the sense of frustration often heard from people with developmental disabilities and their families that, in spite of California law, services don't fit. While nothing can be said of California's system uniformly, it is often said that the system continues to favor a few basic service configurations over innovative, individualized ones. Recent policies at some Regional Centers which refuse community-based day programs to clients because these are difficult to administrate confirm that institutional obstacles continue to frustrate the full implementation of the Lanterman Act.

A second, less important but more imposing political compulsion is the cost of the system. Defenders argue, I believe rightly, that the system seems costly only in the absence of verifiable accounting for the cost-savings the system also brings by deflecting people with disabilities from more costly care needs. When we consider the system's success in drawing down federal funds, private fundraising and add to that the unknown cost of care without our system in place, we offer a good deal to the state.

Be that as it may, the cost of this system grew significantly faster over the 20 years to 2002 than the economy of California, the resource which must be tapped to sustain us. Over those twenty years, that gap has been steadily accelerating. In the end, sustainability can't be measured against theoretical savings but only against available resources. Those who seek cost-saving reforms have a point, that the current system is unsustainable in the long-term.

What's more, the failure over the thirty-plus years of California's community-based system to measure and account for the outcomes provided is the reason we cannot reliably take credit for the savings achieved.

If the story ended there, I wouldn't have started this page. The mother of a 36-year-old with autism made the comment to me not long ago that we were all so busy fighting budget cuts that "we haven't even started fighting the right war yet." That battle will be for a system which fulfills the promise to accountably recognize the differences between people and fully implements the right plan for each. I believe we'll continue to fight the wrong war until we fight the right one. Many groups across the state are doing this, but many of the fiercest and most articulate advocates remain focused on funding the current system.

The accountable system, the truly individualized one can provide more to people with disabilities, save more from the state budget and account for the value it delivers. Starting next week, this blog will begin to discuss specific reform proposals. The underlying theory will be that the right war is the only one we can win.

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