New Yorkers with disabilities are growing more organized and militant in response to the state's ongoing refusal to stop promoting segregated programs and begin an orderly transition to freedom for people with all disabilities of all ages.

The historic events of February 2002 began with a press conference on the 5th. in Albany, held by senior citizen and disability organizations. Together they urged the state to develop a comprehensive, effectively working plan to transition people with all disabilities of all ages out of segregated programs. Such a plan is often called an "Olmstead plan", after the Supreme Court decision that decreed that states that unnecessarily segregate people with disabilities are violating the ADA. New York's plan should include a new Medicaid waiver to provide community-based supports to people with physical disabilities; systematic outreach to people in nursing homes, group homes, and other institutions to inform them of their right to live in the community; goals and timetables for transitioning people out of segregated facilities; and more.

At the press conference Bruce Darling, Executive Director of the Center for Disability Rights in Rochester, took some dollar bills from his left pants pocket, held them up, and said, "We're not asking for more money. All we want is for New York State to take the money out of one pocket--nursing homes and other institutions." Here Darling moved the bills to his right hand and put them into his right pocket, then continued, "and put it in the other pocket--integrated community services." He added that there are more than 130,000 New Yorkers in nursing homes, and tens of thousands more in other large and small segregated settings. National ADAPT leader Bob Kafka told the crowd that the main reason for "institutional bias" in Medicaid-funded services is campaign contributions from nursing home operators and public employee unions. A middle-aged woman in a wheelchair told how she was sent to a Rochester nursing home because she couldn't get adequate in-home supports, and was drugged to keep her quiet when she complained. Then a senior activist spoke eloquently of how her generation, which survived the Depression and won World War II, was being confined and forgotten in nursing homes instead of sharing their valuable experience with younger people. As a finale, Assemblyman Kevin Cahill announced he will introduce a bill to require the state's disability agencies to develop an Olmstead plan.

The need for such a law is clear. A working group of disability activists had been meeting with state Department of Health (DOH) officials responsible for Medicaid-funded disability services for over a year to get a plan started. As Darling reported, ". we had made virtually no progress. The transition project we asked for was not being pursued. They could not confirm whether they had drafted the Medicaid waiver we wanted. No official planning process had begun. Nothing had changed. We gave [DOH] a letter demanding that they give us a written response to our issues by February 5. We got no response..." Indeed, state officials had been telling activists, the media, and each other that New York was a "leader" in community-based services and there was no need for any such measures.

So on Wednesday, February 6, about 200 protesters, many of them Independent Living advocates and consumers in town for some training, paraded through the Capitol Concourse and blocked elevators and escalators in DOH's Corning Tower to demonstrate why such measures are needed. The protesters, organized by Rochester ADAPT and led by Darling, chanted, "Our homes, not nursing homes!" and demanded a meeting with DOH Commissioner Novello. When she refused, they asked for the Governor's aide for health issues, David Wolner. Eventually, Wolner agreed to meet with Darling and a few others. ADAPT had been double-crossed by DOH before; at a protest last year, an official agreed to a meeting, the protesters dispersed, and then the official disappeared. So this time, Darling agreed to send a "runner" to tell the crowd to go home once the meeting started. Then the small group went to a meeting room to wait for Wolner. After 45 minutes of waiting, they returned to the Corning Tower. Since Wolner wouldn't come to them, the protesters went to him. Carrying signs and chanting, the crowd of 200 marched down the Concourse to the Capitol. Four people made it up to the Governor's floor before the State Police shut the elevators down. Four more walked, crawled, or were carried up the stairs, where they staged a sit-in. The crowd in the Concourse held a vigil, NYS Independent Living Council (NYSILC) Executive Director Brad Williams organized a press conference, and the group of eight occupied the Governor's waiting area, until 11:30 pm, refusing all demands to leave. At 11:30, still without the promised meeting, the eight people on the second floor, including Darling, were arrested and removed.

Two days later, on February 8, Governor Pataki appeared at a senior center in Rochester to get some election-year publicity. Darling and about 25 others with disabilities got wind of the event. When the Governor began to speak, Darling stood up and challenged him. He said he'd been arrested in Albany two days before because the Governor's aide wouldn't meet with him. "I can see why," Pataki quipped. There followed a debate: Pataki tried to defend his administration by saying it was spending $5 billion a year for community-based supports. Darling responded, "It's not about money! We aren't asking for more money!" He explained that people with disabilities want the money moved from segregated programs to integrated ones, and repeated their demands for a new Medicaid waiver and a definite plan to transition people out of nursing homes. Pataki finally agreed to a meeting, and an aide approached Darling to reassure him that the meeting would happen because Pataki announced it publicly. So the protesters left.

Once again, however, as soon as the pressure was off, the meeting promise disappeared. So ADAPT and NYSILC decided to send the Governor a Valentine's Day present. People from all over the state were urged to fax or email Valentine's Day messages to the Governor's staff reminding them of the promised meeting. This action started on the afternoon of February 13, and on Valentine's Day morning, Wolner called Darling and scheduled the meeting, then asked him to "please stop the Valentines."

The meeting was held on February 27. Wolner told Darling that a federal planning grant would be used to hold regular meetings among a wider group of stakeholders, but would not commit to creating a formal Olmstead Planning Committee, nor would he commit to supporting a new Medicaid Waiver for people with disabilities.

Through all of this, the Governor and his spokespeople continued to defend the state's record on deinstitutionalization. They said the state's annual expenditure of $5 billion for community-based services implies that New York is a leader in integrated services. They also cited the recently-passed Health Care Act, which increased wages for some homecare workers and included a Medicaid Buy-In, as indicators that New York is doing a great deal to assist people with disabilities to live and work in the community.

Such claims are highly misleading. While NY spends $5 billion on "community-based" services, not all of them are truly integrated. It also spends at least $15 billion on institutional services. Virtually all of those services are unnecessarily expensive, because almost any person with a disability can live in their own home and participate in their community with the right supports, and those supports are almost always less expensive than an equivalent institutional setting. It does not appear that the Act's wage increases for homecare workers extend to those employed through the Consumer Directed Personal Assistance program (CDPA), which gives people with disabilities the freedom to hire and supervise their own attendants. And the Medicaid Buy-In, while a good thing, is not sufficiently generous to enable people with disabilities to build real careers or plan for retirement. In fact, it is less generous than buy-ins in other states and therefore does not demonstrate NY to be a "leader" in this field.