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Plan to Join Us!! VOR 2007 Annual Meeting and Washington Initiative. See -
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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
March 23, 2007
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Table of Contents
1. MASSACHUSETTS: Representative targets housing for residents
2. CALIFORNIA: Agnews Docs Say Former Patients Lack Care - Disabled people
moved to community lack medical services
3. WISCONSIN: P&A Suit to stop new school for the disabled is dismissed
Coming Up: CMS awards second round technical assistance grants to enhance
direct care workforce in 5 states GA, NJ, NC, UT and WI
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1. MASSACHUSETTS: Representative targets housing for residents
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The Daily News
March 21, 2007
Boston - The decision on what will happen to the Walter E. Fernald
Development Center is still a few months away.
What happens if the state decides to sell the land?
Legislation filed by Rep. Kay Khan, D-Newton, would require the
commonwealth to earmark a percentage of profits to provide affordable
housing for former residents of state-run hospitals and schools for
mentally ill or disabled residents.
Khan's bill would provide affordable housing for the former clients of
state hospitals and schools that have been shut down or downsized.
The Joint Committee on Bonding, Capital Expenditures and State Assets heard
testimony on behalf of Khan's bill yesterday.
"When we get rid of state hospitals we need to develop and support
long-term housing for those people," said Toby Fisher, the executive
director of the National Alliance for the Mentally Ill in Massachusetts.
In the 1980s, Massachusetts' deinstitutionalized many of its hospitals and
schools before appropriate community based services were established,
according to Khan's testimony.
"When we dissemble one source of support and housing for this population,
we have an obligation to mitigate the consequences of this loss by
investing in their needs," Khan said at the hearing.Khan cited the
Northampton State Hospital as an example of how the mass discharging of
patients occurred before the proper services for them were established.
"Many of the former residents of the state hospital came to be
Northampton's homeless population," Kahn said. "This homeless population
remains a significant concern for the community."
Khan argued that requiring 25 percent of the profits or housing units go
directly to the population that was formerly served by the property would
help the community and the disaffected people.
"Passage of this legislation would dispense with much of the discussion and
debate over whether or not the populations formerly benefiting from the
property receive any support from the sale," Khan said.
Chris Norris, the assistant director of the Citizens Housing and Planning
Association, and John Thomas, the deputy director of the ARC of
Massachusetts, also testified alongside Khan and Fisher before the
committee in support of the legislation.
Not everyone is sold on Khan's bill.
George Mavridis, who has a family member living at Fernald and used to be
on its board, is skeptical of ARC's endorsement of the legislation.
Mavridis cautioned his unfamiliarity with this particular piece of the
bill, but said that anytime you turn something run by the state over to the
private sector, somebody stands to make a profit.
Mavridis favors turning Fernald into an intermediate-care facility rather
than completely shutting it down.
Khan's bill is a refile of past legislation, but she said she is optimistic
about its passage this time.
According to Khan, similar bills have competed with each other in the past,
but about 30 legislators have signed on to back this one particular bill
for this session.
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2. CALIFORNIA: Agnews Docs Say Former Patients Lack Care - Disabled people
moved to community lack medical services
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Inside Bay Area
March 20, 2007
Medically fragile residents of Agnews Developmental Center in San Jose are
being placed into the community without the medical care they need, doctors
told this newspaper, a problem they say could put the health of their
former charges in jeopardy.
The doctors and residents' family members worry the problems will intensify
when the 122-year-old institution for people with autism, mental
retardation and other developmental disabilities closes. That's because the
state is defaulting on what they said was a promise to deliver the same
level of medical service in the community.
"When Agnews closes, (our) outpatient clinic closes," said Norril Sumanqui,
one of the two physicians and a dentist who spoke to a reporter about the
situation. "You have three big cities -- San Jose, San Francisco and
Oakland -- with no resources. If Agnews closes, where will these people
go?"
Sumanqui is an Agnews staff physician and a member of the Union of American
Physicians & Dentists' bargaining team of the clinic they currently run.
Union representative Jim Moore said his doctors have seen a clear pattern
of declining health among people who have left Agnews for the community.
"What we can say is, based on these doctors' clinical assessments, their
judgment is that there is a pattern of increased morbidity when their
clients are discharged," Moore said.
Families of some of the people who remain at Agnews -- 252 as of Jan. 31 --
said the state's promise to create full-service "medical hubs" to provide
services after their loved ones moved into the community was a key promise
that led them to accept the state's plan to close the institution in June
2008.
The state has closed a number of institutions because many -- including the
courts -- believe developmentally disabled people should be able to live in
the community, and it focused on Agnews in part due to seismic problems
that would have been costly to fix.
"The concept of a service hub . . . was a selling point," said Brian
Boxall, head of Agnews' family group. "I consider this to be a betrayal."
But Eileen Richey, the state official in charge of the closure plan said
the hubs, which would provide medical and other services, were included
only in an attachment with a bevy of other recommendations.
Richey said the state is implementing what's in the actual plan, which
calls for nonprofit regional centers -- which manage care for the
developmentally disabled -- to enhance medical case management and
specialized services and for the temporary deployment of up to 200 Agnews
staff to help ease the transition from the institution to the community, in
addition to creating new, specialized housing and offering dental services.
Still, she said the state is working to keep an outpatient clinic currently
run at Agnews open.
Richey said she was surprised by the doctors' claims that their former
patients are not getting proper medical care. She said others are charged
with monitoring the care received by those leaving Agnews, and they haven't
mentioned such problems.
"That is a new one for me. Obviously, that's something that we need to look
into," she said.
The two physicians and a dentist who spoke with a reporter said they
approached the media out of concern for their patients and for fear of the
permanent loss of resources they desperately need, not because they are
slated to lose their jobs. They said they were told in January they would
lose their Agnews jobs. They said they don't oppose the Agnews closure.
"We've got a simple position: Don't replace us until you've replaced us,"
Moore said.
One lawmaker who has been heavily involved in the Agnews closure process
said she thinks the service hub concept is a good one.
"From a practical standpoint, these are highly specialized services that
are not going to be available in the community," said Assemblywoman Sally
Lieber, D-Mountain View. "It is the state's responsibility to step in and
make sure these services are available."
Lieber said she plans to hold hearings to gather information on how people
being moved from Agnews to community homes are faring. She recently
introduced a bill to create a family-run task force to monitor the moves.
The doctors said they became aware of the care problems when some former
Agnews residents and others who had long lived in the community started
appearing at an outpatient clinic Agnews opened last May.
The clinic, which serves some former Agnews residents and others living in
the community, served 240 people in 2006, a document obtained by this
newspaper showed.
Sumanqui said one former Agnews resident now in community care spent more
than 10 hours in a hospital emergency room last summer for help with a
swollen ankle, and that she had to be sedated for an X-ray due to her
behavior.
The same patient had a similar procedure just months earlier at Agnews, he
said. It took less than an hour, Sumanqui said.
Richey said those who need emergency care would be directed to an emergency
room, instead of Agnews' clinic.
Joseph Mendoza, also a staff physician at Agnews and member of the
bargaining team, said he saw one man who hadn't been to a doctor or dentist
in 15 years. Clinics were unable to treat him because of his behavior,
Mendoza said.
The union's Moore said he has heard similar stories from doctors and
dentists at union meetings about clients' medical needs not being properly
met.
"If we went in looking for these, I'm sure we'd see more," he said.
The doctors said that when they raised their concerns with Agnews
management, management told them their job was to offer a "prescription for
care" in the community, and not to worry about whether the resources for it
to be followed were in place, they and Moore said.
Agnews management declined to respond to questions directly. A spokeswoman
referred a reporter to state officials for comment.
The doctors said they fear Agnews' medical staff will simply take other,
readily available state jobs, and that the specialized services they now
provide -- including basic medical and dental services, psychiatry,
neurology -- will be lost for people they said are a medical specialty unto
themselves.
Few doctors and dentists have the training to provide appropriate services
to developmentally disabled people living in the community, the doctors
said. And few wish to work with this population, because the Medi-Cal
payments that are offered to provide medical services for most aren't
enough to cover the cost of those services, they said.
In a recent series in this newspaper detailing problems in care for
developmentally disabled people living in the community, care providers
complained they have a tough time finding proper medical care for their
charges, and a doctor specializing in care for this population questioned
whether some who died would have been saved by better medical care.
Agnews has some of the most disabled people in the state's institutional
system, Sumanqui said. Unlike other institutions closed by the state in
previous years, Agnews has its own, on-campus acute care hospital because
its residents are so medically fragile, he said.
A Lieber bill will allow state staff to work in homes being built for those
moving out of Agnews.
Family members said Richey told them in December that the service hubs
weren't going to be created.
"My son has been (at Agnews) for 30 years. It's of paramount importance,
his medical care," said Joanie Pepper, whose son, Bruce, is slated to move
into one of the new homes. She said parents asked Richey whether medical
services hubs would be put in place during a meeting a few weeks ago, and
that they got a "non-answer."
The union's Moore said the staff he represents was told that the state was
considering three options, including the hubs, a medical services satellite
at Sonoma Developmental Center, or services provided by an outside
contractor.
"As far as we know, none of these things would come true," Moore said.
Richey said the state is in talks with community partners to continue
outpatient services currently provided by Agnews to the community. She said
the state is talking with nonprofit health care plans in Alameda and Santa
Clara counties, as well as the University of California, San Francisco
medical center, which she said is already working with Golden Gate Regional
Center in San Francisco.
"2007 is the pivotal time to firm up those plans, and we are still working
to do that," said Richey, who said the state will ensure a comprehensive
system of care for those leaving Agnews. "We will absolutely do that by the
closure date."
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3. WISCONSIN: P&A Suit to stop new school for the disabled is dismissed
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By Amy Hetzner
Milwaukee Journal Sentinel
March 15, 2007
Summary: Wisconsin's Protection and Advocacy System, the Wisconsin
Coalition for Advocacy (WCA), filed a lawsuit in July 2006 to halt the
expansion and renovation of Lakeland School, a special education school for
children with disabilities. At the time the lawsuit was filed, over one
hundred families of children with disabilities in Southern Wisconsin filed
a Civil Rights complaint against the WCA with the Office of Civil Rights in
Chicago and with the Office of Special Education and Rehabilitation
Services (OSERS) in Washington, D.C. According the families' news release,
"Consistently, over the past several years, WCA attempted to close Lakeland
School and eliminate this Special School' option for children with
disabilities . . . these families question the use of federal dollars by
WCA to deprive children with disabilities of their right to receive
services in a federally mandated Separate School' option, and deprive their
parents of their right to choose such an option."
On March 14, 2007, the federal judge found that WCA had not established any
"injury" (in the legal sense) to any of its board or members.
A federal judge has dismissed a lawsuit seeking to halt the renovation of a
school for disabled students in Walworth County.
Disability Rights Wisconsin's lawsuit against the Walworth County Board
alleged that the board's approval of $22 million to build a larger building
for Lakeland School violated a federal law that students be taught in the
most integrated setting possible. The school serves about 260 students ages
3 to 21 from throughout the county.
On Wednesday, U.S. District Judge Rudolph Randa dismissed the
organization's lawsuit, saying the group had not shown that it or any of
its members had been injured by the board's decision.
Jeffrey Spitzer-Resnick, managing attorney for Disability Rights Wisconsin,
said his organization will evaluate Randa's decision and consider whether
to appeal.
"What we were trying to do was get the legal issue decided - whether a
segregated school violates the rights of disabled students in Walworth
County," he said. "And Judge Randa declined to make that decision, which is
unfortunate."
Federal law allows separate schools such as Lakeland for some students and
provides avenues for them to challenge their placement on an individual
basis, said Ronald Stadler, who represented the county in the case.
"They're trying to paint with too broad of a brush," Stadler said of the
lawsuit. "They're saying that, for every child, this is inappropriate."
Construction of the new facility has been held up by the lawsuit, Stadler
said.
"The lawsuit itself kind of hangs a black cloud over the whole building of
the school," he said. "We're hoping, with the dismissal of this case, that
whole cloud goes away."
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Tamie Hopp
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