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.

Tuesday, June 22, 2004

California Disability Community Action Network

First things first. CDCAN is the most innovative political instrument I'm aware of. It's role is to inform and organize, through various media, all interested parties about the political life of California's services and supports to people with various disabilities. Anyone interested in the evolution of our system should be aware of this group.

Please note: The website is currently down so I've cancelled the link. People wanting more information can email Marty Omoto, Director/Organizer at


Hello, friends

This attempt to blog will include information, rumination, analysis and pomposity on the general topic of system reform for California's community-based system of support to people with developmental disabilities. Included will be links to useful websites on the topic, reviews of literature and proposals and proposals of proposals. I have no doubt that this will be as stimulating to everyone as it is to me. My goal will be to include an update not less than weekly.

My perspective on this topic is based on who I am and which airs I put on. I am the director of an Independent Living Skills agency. I am the uncle of a beautiful 4-year-old with disabilities. I am a reformer, may God have mercy on me.
MILLENNIUM, n. The period of a thousand years when the lid is to be screwed down, with all reformers on the under side. -Ambrose Bierce

My basic assumptions about this system are:

1. All people have the rights enumerated in our constitution including personal sovereignty which is not waived by receiving public benefits. Californians with disabilities are rightly entitled by law to support based on their personal challenges which does not interfere with their aspirations.
2. All people should expect their taxes to be handled dearly, used efficiently and to serve only ends endorsed through the constitutional process of government. Healthy systems are cost-effective and cost-effective systems are healthy, and no system without deliberate and rational accountability is healthy or cost-effective.
3. All state-funded systems ever and California's system of community-based support for people with developmental disabilities, especially, have plenty of opportunity to improve regarding the first two assumptions.

OK, so, let's see how this goes.