In September, representatives of most of the 37 Centers for Independent Living (CILs) in NY State met in Albany to talk about creating a statewide advocacy network. Out of that meeting came a proposal that is being considered by the NYS Independent Living Council (NYSILC) during its 3-year-plan development process.

That might sound like typical bureaucratic gobbledygook, so here's what it really means:

Over the past few years, CILs like STIC have had some success in getting things changed on the local and statewide levels. Locally, we get more curb cuts and accessible stores and offices; sometimes we get a program to be more inclusive of people with disabilities or more employers to hire workers with disabilities. Statewide, we got the Consumer Directed Personal Attendant (CDPA) program, the Reasonable Accommodations Act, and more funding for CILs, among other things.

Meanwhile, many big problems remain, or keep coming back. Almost every year, the governor tries to cut homecare. Most school systems refuse to integrate students with disabilities into regular classes, and the State Education Department refuses to enforce integration law. Our leaders' left hands don't know what their right hands are doing, and their more powerful right hands dwarf the piddly stuff their wimpy left hands do. OMRDD gets millions of dollars to build group homes and give pay raises to institutional workers, but puts only a few thousand dollars into developing Self Determination and no new money into providing the most integrated individualized community services for more people. OMH gets millions of dollars for forced outpatient treatment but only tiny sums to expand consumer-controlled programs that prevent the need for such treatment. OMRDD gets more money to assist people already in supported work, but VESID gets no new money to start new people out in supported work. A law is passed that says it is state policy to serve people with traumatic brain injuries in integrated programs in their own communities, and then the governor railroads a huge TBI nursing home into existence over the objections of officials who try to enforce that law. VESID is pushing integrated employment, but CBVH is actively resisting it. Overall, despite pretty rhetoric, our state is still largely committed to a disability service system that relies on restrictive, artificial, segregated institutional residences and programs and is not moving forward fast enough to free our people or help them become more productive.

So, while CILs have shown that they are pretty good at advocacy, clearly, we need to do a lot more of it. We need to work toward a unified disability policy in NY that defines integration and independence as the future we're all heading for, a policy that will keep politicians from passing pork to segregated programs and stick-in-the-mud bureaucrats from sabotaging reforms. The best way to do that is to combine our resources and work together. This is what the Advocacy Network can do.

Here's where NYSILC comes in. NYSILC is a not-for-profit corporation created by the 1992 amendments to the federal Rehabilitation Act. Its purpose is to plan for, and support, the development of CILs in our state, and its governing board consists mostly of CIL representatives and representatives of other disability groups. It shares joint responsibility with VESID and CBVH for making and monitoring 3-year plans for the administration of federal CIL funds in NY. NYSILC uses some of those funds for its own costs, and gets to decide how to spend another $880,000 each year. Right now nearly all of that money is used by CILs for individual projects. STIC, for example, used some for our new computer network, and to purchase consultant services for our golf tournament.

Over the last year or so, major changes in the Board of Directors and staff of NYSILC have dramatically increased its visibility and effectiveness as an advocacy tool. They led the successful fight to keep New York from opposing the ADA's ability to regulate state governments in the Olmstead case and to get Attorney General Spitzer to adopt a pro-ADA stance in the Garrett case. They've also been instrumental in the coalition to pass the Medicaid Buy-In and in the voter registration drive just ended. STIC makes no bones about the fact that we were pessimistic about SILCs in general and NYSILC in particular (and we had good reason for it at the time), but now we can see real potential in the organization.

If the proposed Advocacy Network becomes part of the next 3-year plan, NYSILC will use virtually all the money it controls to support it. Each CIL would get enough to create a half-time Systems Advocate position, and would be expected to kick in as much of its own resources as possible to bring the position up to full-time. The Advocate would work directly for the CIL, and would spend about half the time on local systems advocacy issues, but would spend the other half on statewide or national issues that are determined through the CILs' Disability Action Agenda process. These Advocates would only be permitted to do systems advocacy, not direct services, to keep them from getting bogged down and taking their eyes off the prize. NYSILC would create a full-time position to coordinate the Network, increasing its ability to keep people informed and on-track about emerging issues and to assemble and work with coalitions of disability advocates. NYSILC would also provide training for Advocates and volunteers, conduct statewide public relations campaigns on selected issues, and maintain a website that will offer both information and news to the general public and private communication networking for CILs. The two CIL trade organizations, the Association of Independent Living Centers in NY (AILCNY, to which STIC belongs) and COIL (Coalition on Independent Living), would still conduct their annual joint Disability Action Agenda and legislative awareness activities, including maintaining a paid lobbyist. Finally, the possibility of spinning off an Independent Living Political Action Committee (PAC) would be explored, to put disability rights activists on a level playing field with the nursing home and sheltered workshop lobbyists, and public employee unions, that control most disability policy in NY today.

This plan is only a proposal right now; NYSILC needs to approve it, and persuade its co-equals in VESID and CBVH to support it, before it can become reality. That process will take place over the next several months. If it is successful, New Yorkers with disabilities can look forward to more influence and power over disability policy and law in this state than ever before. Perhaps they can even look forward to--freedom.