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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.
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