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---------------------------------- Summary: The following, excellent, editorial
was written by Susan Payne, whose sister has lived in Texas
state schools for nearly 36 years. Susan’s mom is longtime VOR
leader and advocate, Nancy Ward – VOR’s Immediate Past
President. Payne: State schools raise the quality of
life for the mentally retarded Make no mistake, there are forgotten lives in
the state schools for the mentally retarded. But they're not
forgotten by the parents, families, caregivers, employees,
mentors, volunteers and friends. They're forgotten by the
advocacy groups that want the institutions closed and their
funding redirected to community group homes. The forgotten lives belong to the state
school residents who are severely and profoundly mentally
retarded, have severe behavior differences and have ongoing
medical needs. The forgotten include those who seek admission to
a state school. Critics of the state schools point to the U.S.
Supreme Court's Olmstead decision, which affirmed the rights of
disabled people to live in their community, to justify closing
institutions. In actuality, the opinion says: "We emphasize that nothing in the ADA
(Americans with Disabilities Act) or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community settings ...
Nor is there any federal requirement that community-based
treatment be imposed on patients who do not desire it." In its Olmstead ruling, the Supreme Court of
the United States reinforced the right of choice. Closing state
schools would take away choice, thereby violating the ruling.
The court's decision supports institutional care for these
forgotten lives, the people whose severe impairments require the
close care found in institutional settings. Many state school residents were never
expected to live beyond their teens or early adulthood. Families
often attribute their long lives to the wonderful care they
receive in the state schools and the active lives they live.
Department of Aging and Disability statistics show that 54
percent have lived in the schools for more than 20 years. School
residents are not locked away in isolation. They go shopping, to
church, to dances, to theme parks, out to eat, to jobs and to
life skills classes. Much has been made of the 17 deaths at the
Lubbock State School. Of course, residents do die. Most have
many physical and mental health issues, but the on-campus
medical facilities' personnel are knowledgeable and
compassionate in treating the mentally retarded. Many advocacy groups suggest that most state
school residents function at moderate to high levels. This is
simply not true. The Adaptive Behavior Level documentation
from the Department of Aging and Disability indicates that as of
July 31, there were 4,898 residents living in the Texas State
Schools for the Mentally Retarded. Of that number 2,891 are in
the Profound Range, 1,116 are in the Severe range, 734 in the
Moderate range and 112 have an Adaptive Behavior Level of Mild. It's incomprehensible and illogical to
maintain that the state is better equipped to respond to
problems in thousands of group homes than in its own 13 state
school facilities. Group home placement does not widen the
circle of people looking out for these vulnerable citizens. It
makes that circle smaller. These advocacy groups don't advocate for all
mentally retarded. Closing institutions does not protect the
people who cannot survive in group homes. Closing institutions
is a slap in the face to employees who have dedicated their
careers and lives to the schools. Closing institutions disrupts
the lives of the residents, families and the circle of wonderful
people who volunteer, mentor and care for the state school
residents. Most of all, closing institutions ignores the
feelings and opinions of the many parents and relatives of
school residents. Who are we and how do we know? We are the
parents and families of the 4,007 severely and profoundly
mentally retarded living in the state schools. We know them
better than anyone else. We have direct and day-to-day
experience, not just the occasional visits made by members of
advocacy groups. It's unfortunate and frustrating that some
people have trouble accepting that our loved ones will never be
able to live in the community as productive citizens. We accept
them as they are. We love them and are proud of their
accomplishments, no matter how small. We hope our wishes are not lost on state
legislators and agency officials. We won't let our loved ones be
forgotten. Listen to the Supreme Court opinion. We must provide
choice.
------------------------------------------------------------------------------------------- HAZELWOOD, North Carolina — Rick Pollard
lives in a mobile home in Haywood County and pays his bills with
the money he makes manufacturing custom surgical drapes. “I like my job,” he said. “I’ve been here 19
years, and I live on my own.” Pollard, who has developmental disabilities,
works at Haywood Vocational Opportunities, placing directional
stickers on surgical drapes before they are folded and placed
into packages. He works full-time, alongside people who have
disabilities and others who do not. He is proud of his
productivity and says he would never want to work anywhere else. But services for adults who have
developmental disabilities are changing, and the new model looks
very different than Pollard’s job. The state is moving toward supported
employment, which places people in jobs in the community instead
of in centers like the one where Pollard works, and it is
considering closing centers like H.V.O., which offer services
on-site that jobs at restaurants and stores would not. The supported employment model provides
someone who can act as a “community coach” for each person in
supported employment. George Marshall, president of Haywood
Vocational Opportunities, worries the state will do the same
thing with this model it did with mental health. Currently, about 5,000 to 5,500 people work
in what the state defines as sheltered workshops, and they would
be the first ones moved into the community. Those in other
programs that serve people with more serious and complex
disabilities would be moved into the community later. “I’m afraid they’ll move people out of places
like this before they’ve built community capacity,” he said.
“That would be a disaster.” Haywood Vocational Opportunities is one of 14
community rehabilitation programs in 23 counties in Western
North Carolina that banded together in 1978 to form the
Marketing Association of Rehabilitation Centers, or MARC. The
association employs about 2,800 people. The nonprofit centers are some of the
strongest surviving manufacturers in the mountains. Western
Carolina University estimated they pump an estimated $20 million
annually into their communities. The association helps pull grant money such
as a $605,000 grant from the Golden Leaf Foundation and $300,000
from the Janivre Foundation last year. The centers also provide other educational,
rehabilitative and recreational programs for employees, and
member CEOs worry their successful model will lose funding as
the state moves more people into private-sector jobs. State will move ahead with new model Lisa Jackson, program manager at the N.C.
Division of Mental Health, Developmental Disabilities and
Substance Abuse Services, said the state is already piloting a
supported employment program in Mecklenburg County, moving
people out of workshops and into jobs at retail stores,
restaurants, the airport and more. “This is the wave of the future,” she said.
“Other states have done this, and we’re moving toward it.” “I understand the angst,” she said. “But if
the state of North Carolina funds this community coach concept
fully, it’s a model that will work well.” That, said Marshall, is a big “if.” Earlier
this year, the state reduced funding for community support
services from about $60 an hour to $40 and then back up to about
$50 per hour for people with mental illnesses, claiming the
funds were being abused by taking people to movies and the
swimming pool. But those activities likely were therapeutic,
meant to help people gain social skills, and are written into
many people’s plans for treatment. Mecklenburg County has received permission to
work outside of established service definitions — the specific
services for which the state or Medicaid will pay — for its
program, allowing more flexibility in services. But Dennis Knasel, director of consumer
affairs and community services for the Mecklenburg local
management entity, said he doesn’t know if that flexibility will
be allowed statewide. Without that flexibility, and without the
proper funding, supported employment will not work for everyone,
say advocates, and some, like Pollard, would resist being moved. Community rehabilitation programs like H.V.O.
grew out of the sheltered workshops of the 1960s and 1970s,
which employed only people with disabilities, but the
rehabilitative centers employ people with and without
disabilities. Although the state still labels them sheltered
workshops, they have grown into fully integrated,
revenue-producing workplaces with comprehensive benefits and
services. The centers generate between 60 percent and
97 percent of their budgets each year, with H.V.O at the high
end, and Foothills in Marion, which absorbed another program
recently, at the lower end. Last year, sales of
MARC-manufactured goods reached nearly $40 million. One program, the MARC Outsource Initiative, a
national program to market the products of eight MARC members,
reached sales of $1.3 million. The centers manufacture items such as
surgical drapes, truck parts and packaging, and employees can
work full-time or part-time and participate in as many programs
as they want. The centers also train people for employment
in the community. Last year, MARC members placed nearly 600
people in competitive jobs. Most are part-time jobs Some people who can work in a center would
not be able to work in the community, said Joy Shuford, who
recently retired as CEO of Foothills Industries in Marion. “Some people are nonverbal, or they’re
incontinent,” she said. “Where are they going to work in the
community?” Tom O’Brien, CEO of Industrial Opportunities
Inc. in Andrews, said many of his employees’ parents work
full-time and depend on the center. “They have a safe reliable place for their
adult child while they work,” he said. “What would they do if
that went away, and their child, who can’t be left alone, worked
just 12 or 15 hours a week?” “We think it is naïve to think that supported
employment is the only service people with developmental
disabilities need,” said Noel Watts, CEO of MARC. In rural communities, rehabilitative centers
are the best chance for employment for people with disabilities,
said Michael Maybee, president and CEO of Watauga Opportunities
in Boone. “Rural communities don’t have adequate public
transportation, and the jobs they have to offer are mostly
part-time jobs in fast food restaurants,” Maybee said. “The
state is talking about a one-size-fits-all model, and that won’t
work. What’s good in Boone might not work in Robbinsville.”
----------------------------------------------------------------- The U.S. Supreme Court split 4-4 over whether
school districts must finance private education for disabled
children who haven't tried a public special education program
first. After hearing arguments on Oct. 1, the
justices said in a one-page statement today they were upholding
a lower court ruling that a man was entitled to be reimbursed
for his disabled son's private schooling in New York City. The
action sets no nationwide precedent. The father, identified in
court papers as Tom F., is former Viacom Inc. Chief Executive
Officer Tom Freston, according to the Associated Press. "All the school districts in the country
would like a more definitive result," said Leonard Koerner, a
lawyer for the New York City school board, which argued against
reimbursement. The legal question may be raised before the
Supreme Court again in an effort to get a decision with
nationwide effect, said Paul Gardephe, an attorney for the
father. Until then, the ruling is limited to the 2nd Circuit,
which covers New York, Connecticut and Vermont. "With no clear idea how they would vote, I'm
pleased it came out the way it did," said Gardephe. Justice Anthony Kennedy didn't participate in
the case, giving no reasons. The court, as is its practice in
deadlocked cases, didn't say which of the other eight justices
were on which side of the case. =======================================================
Tamie Hopp
REFERRAL/MEMBERSHIP/CONTRIBUTION FORM
Elk Grove Village, IL 60007 |
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VOR * 836 S. Arlington Heights Rd., #351 * Elk Grove Village, Illinois * 60007 877-399-4VOR ph. * 847-258-5273 fax * tamie327@hotmail.com |
