Freedom Clearinghouse advocates held a press conference April 27 to announce that Missouri is the first state to adopt legislation which follows the U.S. Supreme Court's historic Olmstead ruling. As of July 1, 2000, every Medicaid long-term care dollar will be free to follow the person into the setting where they prefer to receive services.Legislators had expected to appropriate $74 million in state funds (with $116 million in federal matching funds) for this purpose. Instead, Representative Quincy Troupe and Senator Joe Maxwell took the lead to bring the appropriation to $625 million, the total Medicaid long-term care budget for the state. Since the state has no mechanisms in place to implement this reversal of state policy, the question now is when freedom will reach street level.
"The state has no rocks left to hide behind," Candace Hawkins said. Hawkins is the Freedom Clearinghouse national organizer and has been active in the passage of this legislation since early January. "I've been living at the Capitol," she laughed. "Some of the representatives asked me, 'Are you sleeping here too?' It was a lot of work, but 78,000 nursing home beds in our state could be empty beds -- once people know they have the right to live where they choose. And think of all the state institutions, ICFMRs and other 'slots' that will go empty now. We won!"
Kirsten Dunham, advocate for the Paraquad Center for Independent Living, called on state departments to "take immediate steps to identify individuals in institutions who can move to the community using existing services and to give people choices before they have to enter an institution."
On April 18, 2000, Governor Mel Carnahan issued an executive order establishing an Olmstead Commission that will develop the state's comprehensive plan to integrate people with disabilities. Until now, 73 percent of Missouri's Medicaid long-term care expenditures have been paying for institutional care.
Four newspapers, the Associated Press, two television stations and Missouri Net Radio turned up for the press conference. "But Mary stole the show," Hawkins said. 'Mary' is a woman who was forced to live in a nursing home for want of community-based services. She told reporters of being stranded on a nursing home toilet for two days and two nights by forgetful aides, of witnessing abuses and sexual assaults. "It's degrading and depressing," she said.
A 20-year-old man who is today living in a nursing home told reporters, "It's not that they treat me so bad. It's more that I can't go to school or have a job... or a real life."
Missouri's Freedom Clearinghouse advocates geared up for the job of liberating people with disabilities from the state's institutional bias in late December, 1999. They called on the U.S. Health & Human Services regional Office for Civil Rights to assist them in bringing their state into compliance with the Olmstead ruling. "OCR has been with us every step of the way," Hawkins said. Attorneys from that office, as well as representatives of the Health Care Financing Administration, accompanied Clearinghouse advocates to crucial meetings with state department heads and with the governor's legal representatives.
In March, Hawkins used the Freedom Clearinghouse state plan blueprint to draw up a state plan for Olmstead compliance. The Regional Manager for OCR, John Halverson, was on hand with litigators from his office when advocates presented it to the state. Read the Missouri Plan.
"With Missouri's Long-term care Medicaid dollars now freed by the Appropriations Bill to 'follow the individual' starting July 1, until state administrator act, all that can be done is identify people who are ready to move to freedom and get them ready to move -- or to file OCR complaints against the state," Hawkins says. "We will draft the Informed Choice booklets and the Due Process booklets for the state.
"However, it is up to the state to get mechanisms in place. We'll be keeping the pressure on."