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VOR is the only national organization advocating for a full range of
residential and support options for people with mental retardation,
including Medicaid-certified Intermediate Care Facilities for the Mentally
Retarded (ICFs/MR) and home and community-based care. VOR supports choice.
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VOR Weekly E-Mail Update
December 8, 2006
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1. FLORIDA: Tachachle Director - Leading the way for the disabled
2. MISSOURI: A group home, a deadly fire, and a lot of questions: Monday's
blaze in Missouri, which left 10 dead, shakes confidence in the oversight
of community-based facilities for the mentally disabled
3. MARYLAND: The Arc responds to Baltimore Sun Editorial supporting choice
4. VOR is counting on YOU. Support VOR today with your year end
contributions. Thank You!
Coming Up: The Myth of an MR/DD Institutional Bias
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1. Florida: Tachachle Director - Leading the way for the disabled
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While Tacachale may be the state's oldest residential facility for
developmental disabilities, its new superintendent sees himself at the head
of an organization that will continue to keep pace with the times.
Don Thomas, who took over from retired Ora White on Aug. 25, came here
prepared to implement new ideas in order to keep the 86-year-institution in
the forefront of quality care for adults with special mental and physical
needs.
He looks at providing specialized dental care - which is provided to
residents - to the outside community. He wants to add respite beds for
disabled people who have temporarily lost their caregiver. When a disabled
person's placement in the community is disrupted, he wants to provide a
temporary haven for stabilization until that person can be placed again.
"We have the expertise and the staff to handle these situations. We should
be able to provide them to the outside community," he said.
Running Tacachale is more like running a small city. There are almost 1,300
employees on site to maintain the 550 acres and care for the nearly 500
adults ages 18 to over 90 living there. The staff includes doctors,
dentists, physical and occupational therapists and about 50 nurses as well
as individual homes' direct care staff.
Most of the men and women residents live in brick homes, up to a dozen in
each, and the vast majority have paid jobs.
"Everyone who works gets paid. It's usually less than minimum wage, but
they keep their earnings and can use it to purchase things for their room,
some have bought their own TV, some money may go to reimburse the state for
Medicaid," Thomas said.
Tacachale is now operated by the Agency for Persons with Disabilities,
after pulling out of the Department of Children and Families two years ago.
The state is gradually closing similar institutions. The next one to go is
Gulf Coast Center in Fort Myers, leaving two to handle the caseload -
Tacachale and Sunland Marianna in the Panhandle - by 2010.
"The goal - and I support this - is when we can move people out of these
institutions and into the community, we will always do that. We can
normalize some people. If they say 'I want to leave' we work with them to
do exactly that," Thomas said. "On the other hand, some are so disabled
they can't function in the community. And others who have lived here for 50
years, this is their home. They don't want to go, and their families don't
want them to go," he added.
There will always be a need for places like Tacachale but the population
with developmental disabilities shifts from time to time. "I plan on
staying a while. I'm having a great time and there is a new challenge every
day. There are very few places in the country that has the kind of
expertise gathered in one place as we do. Even though our residents are
profoundly disabled, I think we give them a pretty high quality of life."
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2. MISSOURI: A group home, a deadly fire, and a lot of questions: Monday's
blaze in Missouri, which left 10 dead, shakes confidence in the oversight
of community-based facilities for the mentally disabled
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The article below, about the Missouri group home fire, is a mixed blessing.
It raises important questions about the preparedness of the community to
serve very disabled people, but the article also perpetuates the old myths
regarding the community being cheaper for everyone. Yet, the article does
acknowledge that most community homes are underfunded, which raises real
questions about any legitimate cost savings. VOR has submitted a letter to
the editor to the CS Monitor; you are encouraged to do so also:
http://www.csmonitor.com/cgi-bin/contactus.pl.
Nov. 30, 2006
By Patrik Jonsson
The Christian Science Monitor
The deadly fire at a group home for the elderly and mentally disabled in an
Ozarks town Monday may hold lessons for a country that is closing many of
its state institutions in favor of private community- based facilities.
Nine clients as well as one staff member perished Monday at the Anderson
Guest House in Anderson, Mo., which housed 32 residents and two overnight
staff. Early worries of arson faded Tuesday. But for Missourians horrified
by the blaze, questions linger.
A main concern is why the state didn't require the group home to be
equipped with a sprinkler system, especially since people there have
difficulty moving around.
That, mental health professionals say, points to problems in both state
funding and regulatory oversight, which vary from state to state. But a
common problem across the country is that group homes are taking in more
difficult clients with needs and requirements that many smaller facilities
are not equipped to handle.
"The level of disability is more significant in these congregate community
settings than people had anticipated, and we have to examine that across
the country in how prepared we are for these people to come to group
homes," says Dave Richard, executive director of The Arc of North Carolina,
an advocacy group for people with mental disabilities in Raleigh.
For three decades, the US has been in the midst of a seismic movement in
how the state cares for the mentally ill. Helped along by movies such as
"One Flew Over the Cuckoo's Nest," that depicted abuses possible in
isolated state wards, the 411,215 mentally disabled Americans and tens of
thousands more classified as mentally ill have trickled out of institutions
and into community-based facilities, many of them group homes in
residential areas.
Nationally, the number of mentally disabled people in large institutions
has dropped from 22 percent to 16 percent over the past five years.
Echoes of a 1999 US Supreme Court decision resounds through the debate.
Justices ruled in Olmstead v. L.C. that states must move patients into the
least restrictive housing possible for their condition, which has
significantly hastened the flow of patients from large institutions into
smaller ones, and, ultimately, into their own apartments.
Ethically, it's the right thing, experts agree. But some states had
concerns that deinstitutionalization would lead to problems. That has borne
true in some respects, including problems with quality of care, safety and
availability of services, and trained staff in some smaller care homes.
"States may be reluctant to get on board with [deinstitutionalization]
because there are concerns that there aren't enough supports to help
[clients] be in the community," says Jessica Jonikas, a director at the
Center on Mental Health Services and Research Policy in Chicago.
Another factor, says Mr. Richard, is that many higher-functioning patients,
per Olmstead, have been moved into independent-living situations, leaving
the most difficult patients now transferring out of state hospitals.
Depending on how their conditions are classified, many rely solely on state
aid except for a small Social Security supplement. Societal costs plunge
from $130,000 for institutional settings to $60,000 for community settings,
according to amicus briefs filed in the Olmstead case.
"We believe that people should live in the community, but the ethical
question is how you balance the risk of events like what happened in
Missouri against the risks of places where people live in [state
institutional] settings," says Richard. "It's really the funding that isn't
designed to support people with more significant disabilities."
That means that regulators tend not to be tough on private operators doing,
for the most part, admirable and necessary work. For example, the Anderson
Guest House was permitted to operate without putting in a sprinkler system
since it was built before 1980, the year a system was required by state
law. It was determined to be too expensive to retrofit the building.
"There's always tension between holding to the letter of the regulations
versus allowing these places to operate, because there isn't much else out
there" in the way of options for troubled clients, says Judith Gran, an
attorney with the Public Interest Law Center in Philadelphia.
To be sure, 22 percent of the mentally disabled population in Missouri have
been shifted from institutions into 1,100 community facilities around the
state since 2000, according to the Research and Training Center on
Community Living in Minneapolis.
It's not clear yet how, or if, difficulties adjusting to that shift played
into the tragic events that unfolded as a quick moving fire shot 30-foot
flames from doors and windows in Anderson. The state is promising a serious
and thorough review of its funding and licensing procedures.
"It's safe to say that legislators, when they return to Jefferson City,
will be looking at regulations regarding this horrific incident," says
Brian Hauswirth, a spokesman for Missouri Gov. Matt Blunt.
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3. MARYLAND: The Arc responds to Baltimore Sun Editorial supporting choice
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Baltimore Sun 11/30/06 Letters to the Editor
Care in community for all the disabled
by Sue Swenson, Executive Director, The Arc - US
The Arc of the United States stands for inclusion of all people with
intellectual and developmental disabilities in our communities - including
people with complex needs ("Care centers need better state support,"
letters, Nov. 25).
The institutional model was developed when most of America was rural, and
when little was known about developmental disability. It is sadly out of
date in the 21st century.
Many states are now free of all state-operated institutions for the
disabled, and more have plans to become institution-free. These states have
found ways to provide reliable, individualized, community-based support to
people with even the most severe disabilities.
Maryland currently provides community-based long-term services and supports
to the vast majority of residents with disabilities, including people with
very severe disabilities. Why not do so for all of them?
Community-based supports should be made available to all current residents
of Rosewood Center, and the center should be closed.
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Baltimore Sun 12/2/06 Letters to the Editor
Lorraine Sheehan
(writing in her personal capacity; she is the Immediate Past President of
The Arc - US).
The Sun has recently published several letters extolling the virtues of the
Rosewood Center (e.g. "Care centers need better state support," Nov. 23 and
"Rosewood dedicated to training residents," Nov. 25). I am the parent of a
40-year-old man who has autism and intellectual disabilities.
I know from my advocacy work with state and national organizations that all
parents and families are fearful that the quality of care that their sons
and daughters receive will not be adequate. Our greatest fear is what will
happen to our loved ones when we die.
But there is no magic in walls. The care and support our loved ones receive
in such institutions is contingent on the commitment and dedication of
their staff and management.
And any of the services mentioned by the letter writers who defend the
Rosewood Center can easily be provided in the community.
As a matter of fact, this happens every day. The residents at Rosewood have
disabilities similar to those many people now served in the community face.
And my experience has convinced me that a person with a disability, whether
severe or moderate, is better protected from abuse and neglect by being
part of their communities.
Nosy, concerned neighbors, friends and families in the community can be an
asset.
The truth is that institutional care is an outdated service model.
Research demonstrates that moving people from institutions to the community
has been extremely successful and that outcomes for people who are treated
in the community are better than for individuals segregated in
institutions. Recent research has also found this to be true for people who
face very serious challenges.
No one is suggesting that the Rosewood Center be closed tomorrow, but
rather that the state find a way to offer the most supportive and
cost-effective services possible to each individual in the community.
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Here is the Opinion-Editorial that prompted the Arc-US's response:
The wrong solution
By Harry Yost
The Baltimore Sun
November 6, 2006
{Harry Yost, the father of a Rosewood resident, is treasurer of Rosewood
Center Auxiliary and was appointed to the Rosewood Citizens Advisory Board
by Gov. Robert L. Ehrlich Jr. His e-mail is yost841@hotmail.com.}
If history is any guide, the state's intention with regard to the future of
Maryland's four residential centers for people with mental retardation and
developmental disabilities is crystal clear. Closed admissions, a steady
stream of transfers, aging residents and understaffing have led to
ever-decreasing populations at the residential centers. Even S. Anthony
McCann, the secretary of the state's Department of Health and Mental
Hygiene, said at a recent political forum that Maryland law and the Supreme
Court's Olmstead decision require the closing of all such institutions.
On the legal side of this issue, however, families know better, and
apparently so does Mr. McCann's boss. In September, Gov. Robert L. Ehrlich
Jr. said that Olmstead "did not dictate the closing of institutions. ...
For a relatively few, the institution may be the appropriate place and the
least-restrictive setting." Families of residential center residents feel
hopeful that the governor's remarks were sincere (they certainly were
informed) and not campaign banter.
The issue of where to best provide residential supports for people with
mental retardation and developmental disabilities is one of life or death
for many residents. Experiences in other states that have embraced a "one
size fits all" (community placement-only) philosophy to providing care
should give Maryland policymakers pause. In 30 states and Washington, D.C.
- and in federal reviews - there have been reports of abuse, neglect and
death in community settings. The Sun's April investigative series on group
home problems in Maryland followed reports dating back to at least 2001 by
The Sun and other Maryland newspapers.
Ron Coleman, a former social worker and incident data analyst with the
Maryland Developmental Disabilities Administration, who oversaw some
community placements during the closure of Great Oaks in Silver Springs,
has dire predictions if Maryland is intent on additional closures. Upon
studying the state's internal data, he recently predicted, "If Rosewood is
closed in the fashion of the Great Oaks experience, medically fragile
residents, and those individuals who are dangerous to themselves, will die
in the community at a rate of 400 percent greater than if they stay at
Rosewood; 13.5 percent will die within the first 18 month."
Behind the push for "community for all" is a coalition of advocates who
support closure of institutions despite objections from families and
regardless, it seems, of the end result. The community-only coalition has
bought into the social policy of full inclusion (literally, in some cases,
as some community-only advocates also provide community-based care and
profit from the transfer of residents to their community homes).
Many families favor facility improvement, not closure. Recent state
inspections at Rosewood revealed serious problems involving resident
safety. Facility administrators and staff quickly addressed these problems
to the satisfaction of state inspectors.
"Rosewood's mixed population, about 150 long-term residents who are
developmentally disabled living with some 50 mentally incompetent
defendants who have been committed to the center by the courts, is the
heart of the problem," a state surveyor recently said. It should be obvious
to anyone that serious problems will arise when residents who are dependent
on their caregivers for every need are forced to live with individuals
capable of armed robbery, assault or rape.
Maryland anticipated problems with mixed populations yet neglected to
address them. Original plans were to limit court-ordered placements to a
manageable 25 people; they now number 50 at Rosewood. Plans to move all
such residents to Clifton T. Perkins Hospital Center in Jessup have been
scrapped, with costs given as the reason. The state has also ignored
Rosewood's anemic staffing levels, with current staff regularly clocking
double shifts - a situation that contributed directly to the recent
"immediate jeopardy" finding.
In addition to utilizing psychiatric hospitals, such as the Jessup
facility, other states, including California and New York, have addressed
the concern of mixed populations by serving court-ordered mentally disabled
and developmentally disabled residents at specialized facilities dedicated
to meeting their unique needs. Other states, such as Idaho and Tennessee,
tackled the challenge by splitting their campuses in two, allowing for
different licensed programs to accommodate two distinct populations, with
dedicated staff, training, licensing and funding for each.
With documented tragedy, dire predictions and more than 13,000 Marylanders
needing services, citizens ought to be crying foul. Families of people
living in residential centers and those who have been forcibly moved are
crying, but we haven't stopped fighting. Maryland's most vulnerable
citizens
with mental retardation and developmental disabilities deserve safe and
adequate services. For now, for most of these vulnerable people, those
services are best delivered in Maryland's four residential centers.
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Tamie Hopp
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