Logo reading "Freedom Clearinghouse"

Sign Up


Stuff to KNOW

Stuff to DO

Who's behind

What is our


Home page




Photo Credits


Image of woman writing

Missouri adopts Olmstead

Missouri's legislature has passed the nation's first bill to reverse the institutional bias of Medicaid-funded health and personal assistance services. Every dollar of Medicaid long-term care funding in the state will now "follow the person" to the place where he or she wishes to live.

by Lucy Gwin

A coalition of advocates, including Candace Hawkins of Freedom Clearinghouse, 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 $645 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," Hawkins said. She 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 78,500 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!" For more of what Candace Says, read that whole interview by Josie Byzek in the July 2000 MOUTH.
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 Donna stole the show," Hawkins said. Donna 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."

Shown here, Candace Hawkins and Max Starkloff, two of the heroes of the Battle of Missouri. (Both are wheelchair users. But Max, being a much larger person, uses a much larger wheelchair.) Starkloff spent twelve years in a nursing home.

Missouri's advocates geared up for the job of liberating all 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."

Who got the job done?
Kirsten Dunham and Jim Tuscher of Paraquad, plus Cheryl Price and Joe Alder who are independent advocates, joined Hawkins for the day-to-day legislative and coalition-building work. The coalition included Adapt of Missouri, People First, MadNation, a number of independent living centers, and the AARP.
By our reckoning, more than 53,576 Missourians will be able to choose where they live and receive disability-related services under Missouri's new plan.

How we arrived at the number
With 78,500 beds system-wide, and a conservatively-estimated occupancy rate of 75 percent -- after allowing for 9 percent private pay, the industry average -- 53,576 Missourians who are now inmates of nursing homes, developmental centers, ICF-MRs, private rehabs, group homes, and Medicaid-funded mental hospitals must be given the right to choose where they wish to live and receive services.
Today, Missouri spends 78 percent of its long-term care budget in institutions and is the winner of an Adapt "Golden Urinal Award" for the state's longstanding institutional bias.

A pattern to follow
Thirty more states are like Missouri, offering the usually well-hidden Medicaid Personal Care Option. Missouri kept its Option squirreled away in the department of Voc Rehab. You had to be certified "job-ready" to get on the Options waiting list. Waiting time could be as long as six years.

In those thirty Option states (read the list), all advocates must do is get money-follows-the-person language written into an appropriations bill. In other states, we must push for states to adopt the Personal Care Option. Failing that, we must press each state department to write a number of waivers, and press state legislatures to fund them.
A few states, Candace believes, won't need much more than arm-twisting in the legislative cloakroom. She's done some of that in her time and says, "When a state wants to do something, it gets done."

That $645 million for freedom goes into circulation on July 1 this year. Realistically? The state has not yet put the necessary freedom mechanisms in place. We expect Missouri will dish out some put-it-offs, but freedom will come -- and soon.

Together, we can open the gates of freedom. Believe it.




Freedom Clearinghouse is a project of
Free Hand Press, publisher of Mouth magazine.
Website developed by
Cliffwood Organic Works.
Website hosted by
| E-mail | Home |