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VOR Weekly E-Mail Update
April 11, 2008
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STATE NEWS
1. NEBRASKA: Beatrice State Developmental Center: A Guardian’s
Perspective
2. MEDICAID and the States: Bill Advances to Suspend Medicaid
Cost-Shift Rules
3. MASSACHUSETTS: State Settles Lawsuit over Placement of
Disabled
4. FLORIDA: Nursing Home Residents Sue for At-Home Services
(excerpts)
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1. NEBRASKA: Beatrice State Developmental Center: A Guardian’s
Perspective
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Summary: The following editorial appeared in the Omaha World
Herald on April 4, 2008. The writer, Margaret Huss, is the legal
guardian to her 43-year-old brother who has resided at Beatrice
State Developmental Center for 25 years. She is an attorney and
lives in Omaha with her husband and four sons.
Opinion: Beatrice center is best for some, despite flaws; don’t
eject them
By Margaret N. Huss
April 4, 2008
I’ve read the recent news coverage related to the Beatrice
State Developmental Center in which the U.S. Department of
Justice and some state officials cite a federal law that
individuals with disabilities should be provided the most
integrated setting appropriate to their needs.
What I have not seen is an acknowledgement from decisionmakers
that, in fact, the state of the law is a little more complicated
than that. Sometimes, what’s important is what is not said.
What is not said is that in 1999, the U.S. Supreme Court
(Olmstead v. L.C.) expressly stated that nothing in the
Americans With Disabilities Act condones termination of
institutional settings for people unable to benefit from
community settings.
The court went on to say that there is no federal requirement
that community-based treatment programs be imposed on people who
do not desire them.
What is not said is that in the Olmstead case, the Supreme Court
set forth a three-part test for determining whether a community
setting is appropriate for a given person. The second prong of
the Olmstead test is whether the transfer is opposed by the
affected individual. Many of the residents at Beatrice have been
adjudicated to be mentally incapacitated and thus have legal
guardians, who often are family members, to make decisions in
the best interest of the individual.
According to recent news articles, state officials may transfer
residents out of the Beatrice center notwithstanding the express
wishes of guardians. Taking such action appears to be in direct
violation of federal law.
A casual observer might ask: Why, given all the problems at
Beatrice, would guardians persist in desiring that their loved
ones remain at the center?
Many parents and guardians remain committed to Beatrice because,
in spite of its identified shortcomings, they know it to be the
best of all available options for their loved ones. Many have
tried community-based services, with poor results.
Most guardians are very familiar with the developmental
disabilities landscape. They know that community-based programs
are no panacea. These programs face the same staffing and
funding shortages that plague the Beatrice center. Such programs
also suffer from an acknowledged lack of continuity of care,
oversight and accountability. This is because in community-based
care, each facet of an individual’s care (such as residential
services, health and dental care, vocational services and
transportation) is actually provided by a separate agency, each
with separate staffs, protocols and procedures. Historically,
many of these agencies are here today and gone tomorrow.
If guardians know Beatrice to be the best, least restrictive
place for their loved ones, we should listen to them. VOR
(http://www.vor.net), a national advocacy organization that
speaks for people with mental retardation and argues for choice,
says it best: We should seek to move past the institution versus
community debate and work toward ensuring that all people with
developmental disabilities are safe and healthy, regardless of
where they live.
The Beatrice State Developmental Center is a good and needed
facility, staffed with many competent and caring people who face
daunting challenges with very limited resources. State
decision-makers must have the will to fight for those most
vulnerable citizens who call the center their home.
I applaud those in state government who are attempting to
address the issues responsibly, and I urge them to do their own
research so that they are in the position to do what’s best for
Nebraska.
My brother cannot talk, so I do my best to try to speak for him.
I grew up with him, and my concern for him goes well beyond that
required by law. I consider it an honor to share in his life and
to help him bear his considerable burdens.
Despite his challenges, it is clear to anyone who spends time
with him whether he is happy or sad or frightened or anxious,
even though he cannot speak. But that’s because sometimes what’s
important is what is not said.
Community-based programs suffer not only from staffing and
funding shortages but also from a lack of continuity of care,
oversight and accountability.
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2. MEDICAID and the States: Bill Advances to Suspend Medicaid
Cost-Shift Rules
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By Jane Zhang
April 10, 2008
Wall Street Journal
WASHINGTON -- Legislation to block Medicaid rules that
states said would shift billions of dollars of costs to them
began a move through the House.
The House Energy and Commerce Committee's health panel Wednesday
unanimously passed the bill, which would put a moratorium on
seven rules that, among other things, would end federal payments
for physician training and transportation of Medicaid-eligible
children to school.
Congress put some of the rules on hold last year; that
moratorium expires June 30. The new legislation would hold the
rules in abeyance until April 1, 2009, when there will be a new
president.
"The Bush administration has and will continue to oppose any
moratorium on enactment of our pending regulations," said Mary
Kahn, a spokeswoman for the Centers for Medicare and Medicaid
Services, which manages Medicaid, the federal-state program for
the poor and disabled.
Commerce Committee Chairman John Dingell (D., Mich.) offered a
version of the legislation that would give the Department of
Health and Human Services an additional $25 million a year to
reduce Medicaid fraud and abuse. It was passed on a voice vote.
Because the measure emphasizes cracking down on fraud, Rep. Joe
Barton (R., Texas) said, "I'm reasonably confident" the
administration won't veto it.
Rep. Frank Pallone Jr. (D., N.J.), chairman of the health
subcommittee, said lawmakers are considering attaching the
moratorium to a spending bill.
The Congressional Budget Office has estimated the rules would
save the federal government $1.65 billion for fiscal 2008 and
2009, an amount lawmakers must offset with savings elsewhere
under the pay-as-you-go budget rules. To help reach that number,
the bill would require more scrutiny of Medicaid beneficiaries'
eligibility, giving states access to enrollees' financial
records.
The expectation is that some will be disqualified because their
assets exceed the program's guidelines.
The push to stop the rules has support from all of the nation's
governors, who already face budget crunches because of declining
revenue tied to the housing crisis; more than half the states
predict budget deficits for next year. Medicaid accounts for 20%
or more of state spending, and the number of enrollees, about 50
million people, tends to rise when the economy slows.
After Wednesday's vote, a Medicaid spokesman confirmed that
Dennis Smith, director of the Center for Medicaid and State
Operations and the architect of the rules, is leaving his job
this month.
Last week, Mr. Smith said the rules are needed to keep the
program afloat and Medicaid "should not become a limitless
account for state and local programs and agencies to draw
federal funds for non-Medicaid purposes." He said the federal
government will pay $196 billion of Medicaid's $345.6 billion
cost for this fiscal year.
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3. MASSACHUSETTS: State Settles Lawsuit over Placement of
Disabled
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March 21, 2008
By James Vaznis
The Boston Globe
More than 600 mentally retarded or developmentally disabled
individuals will leave nursing homes in the next four years, to
live more independently in an apartment, family home, or group
setting, state officials announced yesterday.
Their exodus is a key part of a settlement the Patrick
administration reached with advocates for the disabled in a
10-year-old case in which plaintiffs argued that the nursing
home placements violated federal mandates, including a
requirement that they be in the most integrated setting
appropriate for their care. Many were placed in nursing homes
even though they are significantly younger than the senior
citizens the facilities are designed to serve, reducing their
quality of life and contribution to society, the suit contended.
"This is great," said Jean McGuire, assistant secretary of the
state Department of Health and Human Services. "This will
accelerate further development of community-based services for
people with mental retardation or developmental disabilities."
The department, she said, is calculating the cost of caring for
these adults in their own residences or group homes.
Services the state will provide to the individuals in their new
homes include personal care assistants, nurses, and physical
therapists. Many also will have access to recreational
activities, educational opportunities, and job training.
The settlement is the second resolution in the case, which was
named after Loretta Rolland, a disabled Agawam woman and lead
plaintiff in a case filed in 1998 in US District Court on behalf
of 1,600 people. It was pushed by Arc Massachusetts (formerly
the Association of Retarded Citizens Massachusetts) and the
Center for Public Representation, based in Northampton and
Newton respectively. Neither group could be reached for comment
yesterday.
Initially, the case placed more than a thousand people in
community-based housing and care between 2000 and 2007. But more
than 700 people remained in nursing homes.
The state said it could provide appropriate services for them
there, but advocates disagreed and contested in court.
Patrick, an advocate of community-based care, pushed for a
resolution. The state will move more than a hundred people a
year over the next four years.
The settlement will leave roughly 100 individuals in nursing
homes because of age, condition, or circumstances, McGuire said.
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4. FLORIDA: Nursing Home Residents Sue for At-Home Services
(excerpts)
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By Stephen Nohlgren
St. Petersburg Times (excerpts)
Monday, March 31, 2008
John Boyd, 50, has been paralyzed since 14. He would like an
apartment of his own and a job, like when he answered customer
service phones for Red Lobster a few years back.
Instead, he lives in a nursing home, a frequent situation when
Florida Medicaid pays the bills. That may change. Boyd is one of
six other physically disabled nursing home residents backed by
the AARP Foundation who have filed a class-action lawsuit
against the state of Florida seeking community supports.
Florida spends 87 cents of its Medicaid dollar on nursing homes
when caring for the frail and disabled. Only nine states commit
a smaller portion to home-based care.
Given today's budget crises, Tallahassee is not in an expansion
mode. Waiting lists that keep people like Lee and Boyd from
blending into the community are likely to get longer, not
shorter.
But the clock is ticking.
Baby boomers, who once didn't trust anyone over 30, now face the
prospect of their own decline. Other states are moving toward
more at-home care. Florida will be pressured to keep nursing
home care to a minimum.
"When that spike in demand for services hits, we will have to
pay more attention'' to home-based care, says Tampa's Sandy
Murman, a former legislator who specialized in long-term care.
"But then we will be in crisis management mode.''
Jacksonville quadriplegic John Boyd is not your typical nursing
home resident. He makes runs to Publix and convenience stores on
a motorized scooter, buying cigarettes, sodas and lottery
tickets for other residents. Until a medical condition
interrupted his classes, he studied computer programming at a
local community college.
Boyd figures the economics of his care are a slam dunk.
Medicaid, a federal-state health program, pays Harts Harbor
Health Care Center more than $4,000 a month to house him and
tend to his personal care, a fairly typical nursing home bill
for taxpayers.
Boyd thinks he could hire his own aides a few hours a day for
half as much if he lived in subsidized housing or had his own
place with a roommate. He once patched together a similar
arrangement while living with his grandmother, until she died in
1994.
Florida Medicaid does have a few at-home programs that appear to
save money. The Nursing Home Diversion project and others run
$1,100 to $1,800 a month.
But what's true for some individuals may not apply across the
board.
Some nursing home residents require too much care to stay at
home. People at home often soak up other public dollars that
don't factor into the Medicaid equation, programs such as food
stamps, meals on wheels and subsidized housing.
Most important, no one knows how many people avoid public
assistance because it would mean living in a nursing home. Give
them options and thousands might leap at the chance for aid.
State officials declined to comment for this story, citing the
pending lawsuit. But in court filings their lawyers suggest that
a wholesale move toward home care could swell the Medicaid
budget with new applicants.
"This is exactly the kind of policy decision that courts should
leave to the elected state officials," the lawyers said.
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Tamie Hopp
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