ST. LOUIS — Melody Ping never thought she would be trying to moveout of a nursing home. She lived in a St. Louis apartment for 19 years and worked as an
accountant until two years ago, when she lost her job. Ping, who has
multiple sclerosis, couldn't find new work. When her unemployment ran
out, she ended up on Medicaid in a nursing home.
Ping, 51, is among tens of thousands of people nationwide who want to
live on their own, but instead remain in nursing homes, rehab centers
or state hospitals, often at a higher cost to taxpayers because of a
historic bias toward institutional care.
Ten years ago today, the U.S. Supreme Court said that
bias amounted to discrimination. Now, as disability advocates
celebrate the anniversary of that landmark ruling, they worry the Obama
administration is backing away from a pledge to give more people with
disabilities the option to live at home.
As a senator, Barack Obama co-sponsored the
Community Choice Act, pending legislation that would give
Medicaid recipients equal access to services in the community and not
force them into institutions. But the administration recently said it would
not address the issue as part of its proposed health care
Disability rights advocates were so angered that at least 90 were
arrested during an April protest outside the White House. For some, the
dispute was a blunt reminder of how hard it has been to put an end to
discrimination even with affirmation from the Supreme Court.
"I don't think most policymakers see it as a civil rights issue," said
Andrew Imparato, president of the American Association of People with
Disabilities. "I don't think most people see the ability of
getting out of bed and dressing in your own home as a civil right."
A spokesman said President Obama continues to support efforts to help people with disabilities move out of nursing homes.
About one in five nursing home residents responding to a survey by the
Centers for Medicare and Medicaid Services indicated they would prefer
to live in their communities. That translates to 270,000 of the
nation's 1.35 million nursing home residents.
Demand for community services is likely to mushroom in coming decades.
Improvements in medical technology help more people survive serious
injuries, but often with a disability. Baby boomers entering their
retirement years are demanding alternatives to nursing homes.
"If you can't hear the thunderstorm coming, you're not listening," said
disability advocate Mark Johnson of Atlanta. Living at home "is what
people would want for themselves and their families."
That was the motive for the Olmstead case — named for defendant Tommy
Olmstead, Georgia's human services commissioner when the case was
brought by two mentally disabled women, Elaine Wilson and Lois Curtis.
They said they were segregated unnecessarily in a state hospital, and
that with proper support, they could live at home.
The Supreme Court ruled
that funding services for Medicaid recipients only in institutions
violated the Americans with Disabilities Act.
The decision touched off a wave of hope. The U.S. Department of Health
and Human Services recommended that state Medicaid directors draft
plans for helping people who wanted to move out of institutions.
Twenty-nine states produced plans, but few resulted in actual changes.
Many are now out of date.
Nationally in 2007, more than 331,000 people were on waiting lists for
community services. About two-thirds have developmental disabilities,
and the rest have other disabilities or are elderly.
In Missouri, where about 48,000 people live in institutions, including
nursing homes, about 45 percent of the state's Medicaid long-term
spending goes to home services. About 4,000 people are on a waiting
list for community services — most are developmentally disabled
people, some who do not live in institutions.
In Illinois, which has at least 97,000 people in nursing homes and
other institutions, about 30 percent of Medicaid long-term spending
goes to community services. Disability activists in that state worry
that the current budget shortfall may force more people into
Disability advocates blame the slow progress on opposition from the
multibillion-dollar nursing home industry and from unions that
represent state institution workers. Also, many states have been
unwilling to alter budget structures that favor institutions.
The American Federation of
State, County and Municipal Employees has declined requests
by disability groups to endorse the Community Choice Act, which it
worries could cost the union's members jobs.
Health Care Association has never taken an official position
on the act, said Susan Feeney, a spokeswoman for the organization
representing the nursing home industry. "We do support the ability for
individuals with disabilities to receive the care they need in the most
But industry groups have opposed measures to make community services
mandatory, saying they could jeopardize funding for people who need
nursing home services.
"It's difficult to bring about a cultural change," said Stephen Gold, a
Philadelphia lawyer who has handled dozens of lawsuits for people
seeking to move out of institutions. "It's like a big ship, and we're
slowly turning it."
More than 140 lawsuits have been brought across the country. While many
led to individuals leaving institutions, they haven't always changed
state Medicaid programs.
Missouri was among the first states to allow Medicaid funding to follow
a resident who leaves a nursing home. Federal grants and pilot efforts
have encouraged similar policies.
Two obstacles tend to stand in the way of people like Ping: They cannot
get or find the services they would need at home, such as an attendant
to help them get out of bed, dress or bathe. And they cannot find
affordable, accessible housing, which is in short supply.
In St. Louis, the waiting list for low-income housing vouchers is
"closed indefinitely." And housing options in other Missouri cities can
be hard to come by.
Peter Lloyd of St. Charles knows how much harder it is to move out of a
nursing home than into one. He landed there after being hospitalized by
an infection and spent more than a year arranging for services so he
could move to his own apartment.
"I needed to be around younger people in the same situation," said the
44-year-old Lloyd, who has cerebral palsy. "None of the activities are
geared for people my age. How many times a week can you play bingo?"
After months of paperwork and phone calls, he got an apartment through
the St. Charles County Housing Authority. He also got funding for an
aide to help him wash, dress and cook.
Seven years later, Lloyd is really on his own. He no longer needs a
personal attendant. He drives a van, adapted for his power scooter, to
St. Charles Community College, where he is pursuing a degree in
English. On the weekends, Lloyd drives to Chesterfield, where he works
for a computer help desk.
But the chances of making a transition like Lloyd's vary widely from state to state.
In Tennessee, only 1 percent of Medicaid long-term funds for disabled
and elderly adults went to community services in 2007. By contrast,
Arizona spends 64 percent of Medicaid long-term care money on community
Disability advocates argue that real progress won't come until more is
done to keep people at home. They have pinned their hopes on the Community
Similar bills have come before Congress for at least a decade. As a senator, Obama cosponsored the bill in 2007.
But for now, long-term care is not part of his health care reforms.
White House officials cited cost as the reason in a meeting with
disability advocates in April.
Obama's staff wouldn't say what his current position is on making
community programs mandatory. The White House Web site had said Obama
would support the Community Choice Act. Recently, the site
was changed to say he would "build on existing efforts to
encourage states to shift more of their services away from
Disability advocates say that letting more people have services at home
will save money, one of Obama's goals in health care reform.
The average annual cost of a nursing home nationally is about $75,000,
according to a recent study by AARP. Community services that allow
people to remain at home are about $23,000 a year, according to an
analysis of Medicaid data by the Center for Personal Assistance
Services at the University of California, San Francisco.
Critics warn that even if costs are lower in individual cases, overall
costs will rise because more people with disabilities will request
services if they are available.
In Texas, where 18,000 people have moved from nursing homes since 2001,
officials say they have seen the savings firsthand. "It certainly does
not cost more," said Marc Gold, a state official who directs the Texas
Promoting Independence Program.
Chris Hilderbrant, of the Center
for Disability Rights, said Obama and congressional leaders
are missing an opportunity to fix a long-standing injustice. Once
again, people with disabilities are left on the sidelines, he said.
"We're going to get to you later," Hilderbrant said, "means we're going
to get to you never."
In St. Louis, Melody Ping is still waiting in a nursing home, longing
for a return to apartment life, where she likely will need an attendant
to help her.
"I'm used to making my own choices," Ping said. "Here, they tell you when to get up and when to eat."