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REMINDER: THERE WILL BE NO UPDATE FRIDAY, AUGUST 25. Tamie Hopp will be on
vacation, without access to e-mail during that time.
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VOR Weekly E-Mail Update
August 18, 2006
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1. MISSOURI: At Kansas City hearing, families express their concerns to
state task force
2. NORTH CAROLINA: 53 Deaths in Five Years Tied to Adult-Care Violations
3. ILLINOIS: Bill changes LDC focus: Measure proposes veterans care at
closed facility
4. WASHINGTON, D.C.: District Cleansed Group Home Death Reports Court,
Council Didn't See Unfavorable Information
5. WISCONSIN: Brown County officials see need for crisis home -- County
considers response plan, closing part of mental health center
6. UTAH: Advocates for mentally disabled want facility shut
7. CALIFORNIA: Disabled care agency clashes with families -- Some say
bureaucracy is taking precedence over patients' best interests
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1. MISSOURI: At Kansas City hearing, families express their concerns to
state task force
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Summary: Advocates want Missouri centers kept open. Speakers say that
closing the facilities is the wrong way to deal with abuse and neglect.
The Kansas City Star
August 13, 2006
A public hearing Friday on preventing abuse and neglect in Missouri's
mental health system turned into a plea for state officials to keep western
Missouri's state-run facilities open.
The hearing at Western Missouri Health Center, 1000 E. 24th St., was
conducted by an eight-person task force. Gov. Matt Blunt formed the task
force after the St. Louis Post-Dispatch reported in June that 21 deaths and
more than 300 injuries had occurred since 2000 at facilities for the
mentally ill and disabled operated or overseen by the state.
Blunt has since announced plans to close the Bellefontaine Habilitation
Center in St. Louis, where widespread abuse and neglect were reported. The
center is one of six large state-run group homes for disabled adults. The
closure could force many of its residents into private group homes overseen
by the state.
Jean Barrett of Independence was one of several speakers at the hearing who
expressed fear that the mentally disabled would not receive adequate care
in private group homes if the state closes its habilitation centers and the
smaller group homes associated with them.
Barrett, 77, said her 53-year-old son has severe developmental disabilities
and has lived at the Higginsville Habilitation Center since 1964. She said
he has the freedom to go to church on Sunday, a movie on Tuesday and get a
massage on Wednesday. Barrett called the staff dedicated and caring.
Ron Wehmeyer, president of the Higginsville Habilitation Center Parents
Association, told the task force that privatizing group homes would be
"ill-advised and potentially dangerous to the mentally retarded citizens of
Missouri." Wehmeyer said that the mortality rate is significantly higher
in privately run group homes.
Bruce Eddy, executive director of the Jackson County Community Mental
Health Fund, said that a lack of proper facilities for the mentally
disabled has turned western Missouri's jails into "our largest providers of
inpatient mental health care."
Eddy said the state should deal with the abuse and neglect by forming an
independent entity to oversee the Department of Mental Health, but he said
the problem was only "a microcosm" of the larger problem of having an
underfunded system.
"Simply rearranging inadequate resources will not lead to a solution," he
said.
Lt. Gov. Peter Kinder, who leads the task force with Ron Dittemore, interim
director of the Department of Mental Health, said the panel will present a
written report to Blunt and legislators in the fall with recommendations on
ensuring the safety of mental ill and disabled patients. The task force
visited St. Louis on Thursday and will hold hearings in four more cities
this month.
This was the second time in 10 weeks that state officials collected
testimony in Kansas City. The Mental Health Commission held a hearing in
May. Dittemore, who took part in those six statewide hearings, said that
within a week the commission will publish its report on recommended changes
in the mental health system.He said the department has instituted several
changes since then, including retraining staff members and replacing
dangerous equipment in several facilities.
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2. NORTH CAROLINA: 53 Deaths in Five Years Tied to Adult-Care Violations
August 13, 2006 -The News & Observer
More than 50 people living in adult-care homes in North Carolina died
recently after preventable mistakes. State records say that inattentive
care, medication errors and poor maintenance of the homes contributed to
the deaths over a five-year period.
Residents of these assisted-living facilities, rest homes and family-care
homes have choked to death, frozen, been scalded and wandered into traffic,
according to reports on file with the state Division of Facility Services.
One suffered a fatal stabbing by a fellow resident. Another received the
blood thinner Coumadin for five days instead of Claritin, an allergy
medicine.
In each case, the deaths arose out of "something the facility did or failed
to do," said Jeff Horton, the division's chief operating officer.
For about 27,000 North Carolinians living in adult-care homes, the death
rate after these preventable incidents is more than six times that of state
residents over age 65 who die from health-care complications such as
surgery gone wrong.
These cases, in which people died after the staff or home committed serious
violations, are just the ones reported to the state. Advocates for
residents say more occur without notice. Outside of family and government,
the deaths rarely get attention. A change in state law last year resulted
in reduced public access to investigations and information about penalties
in the cases.
Jerry Cooper, executive director of the N.C. Assisted Living Association, a
trade group, called the deaths tragic. "We need to kind of step back and
look at the big picture and see what system could have been in place," he
said.
Under the law, county and state investigators propose fines for violations
that include negligence, medication errors and improperly maintained
buildings. But these fines are lowered or dismissed in about 38 percent of
the cases, an analysis by The News & Observer has found. The average fine
paid in these cases was about $2,615.
Since 2000, the state has dealt with 67 cases of preventable deaths in
adult-care centers. The N&O analyzed 53 cases for which complete data were
available and the most serious level of violation occurred, according to
state records.
Industry representatives and advocates for older people point out that many
adult-care homes do a good job caring for residents. Horton said that
problems can often be traced to poor staff training, high turnover and the
placement of residents in homes that aren't equipped to care for them.
Industry representatives say state Medicaid reimbursement rates should be
raised to better cover the increasingly complicated care that patients
require.
Clearly, the growing industry is in flux, and state regulations often
struggle to keep up. Changes to state law in 2005 increased some fines to
as much as $20,000 and added inspectors for the adult-care industry; each
facility will be inspected annually beginning next year.
In the same session, though, a provision quietly added to the state budget
bill at the last minute cut the monthly meetings of the Penalty Review
Committee to twice a year. This state-appointed advisory committee is seen
by advocates for older people as a key means of opening the regulatory
process to families and the public.
Betty Broadhurst of Rocky Point, a former committee member, predicted that
the changes would be harmful to elderly residents.
"There will be no advocacy," she said. "There will be no voice for these
people."
Rest homes get bigger
Twenty years ago, rest homes in North Carolina were often home-like
operations -- small businesses that housed 16 or so older residents, said
Florence Soltys, a UNC-Chapel Hill expert on aging. "They made a living,"
Soltys said, "but it wasn't to pay off stockholders."
As people lived longer and nursing homes grew crowded, large chains that
ran nursing homes have branched into assisted living to capitalize on an
economic opportunity. Many built large homes, with 100 beds or more.
Growth has exploded just in the past few years, said Joshua Wiener, who is
working on the first nationwide survey of the assisted-living industry for
the Research Triangle Institute.
Nationally, there could be as many as 1 million people in adult-care homes,
compared with about 1.5 million in nursing homes, Wiener said. The number
of adults in North Carolina needing care is estimated to have increased by
about a third over the past 15 years.
"People are looking for alternatives for nursing-home care, one that
ideally involves more choice for the residents and is more homelike and
less expensive," Wiener said.
Nursing homes, with a higher percentage of sicker residents who require
skilled nursing care, have received more federal money. But that comes with
strings attached -- more regulation. Federal rules require them to have a
nurse on duty and, generally, to have roughly one worker for every 10
residents.
Adult-care homes generally have only a certified supervisor and one aide
per 20 residents during day shifts, and one aide per 30 residents at night.
A state program to be announced later this month is designed to reduce high
rates of turnover among direct care workers by recognizing centers that
voluntarily meet higher standards. Increasingly, rest homes have been
taking in sicker residents, even though staff training is often minimal and
pay is typically low. Among those who are entering rest homes are people
with mental illness -- and they're often much younger than other residents.
"I don't think with the personnel that they have and the ratio [of
caregivers to residents] that they are able in many instances to give
adequate care," said Soltys, the UNC expert, of the state's adult-care
homes.
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3. ILLINOIS: Bill changes LDC focus: Measure proposes veterans care at
closed facility
Summary: Plans to re-open the previously closed Lincoln Developmental
Center for people with mental retardation and developmental disabilities
have stalled. Most recently, an Illinois legislator has introduced
legislation to use the renovated buildings as a veterans facility for
veterans with Alzheimers, as discussed in the story below. It seems odd
that serving veterans in a specialized settings is an acceptable response
to the critical needs of that population due to a sizeable waiting list,
but serving people with developmental disabilities in that same specialized
setting is unacceptable. Although we mean no disrespect to the needy
veterans, the plan doesn't seem very fair to the people with developmental
disabilities for whom the facility was designed.
State Journal-Register -- August 4, 2006
State Rep. Bill Mitchell, R-Forsyth, said today he has proposed legislation
to open the four new 10-bed homes on the former Lincoln Developmental
Center grounds as veterans facilities, especially ones suffering from
Alzheimer's disease.
One of the four homes already is complete, with the other three to be done
by month's end.
The homes originally were intended for use as community independent living
arrangements, or CILAs, for developmentally disabled residents, but the
plan has been put on hold due to budget constraints and complaints from
advocates for developmentally disabled persons.
Mitchell said he additionally has introduced legislation appropriating $7
million to the Department of Veterans' Affairs to begin using the
facilities.
Mitchell seeks to have the money transferred from the Department of Human
Services to the Department of Veterans Affairs.
"I'm asking all veterans in the General Assembly to be co-sponsors,"
Mitchell said of his legislation. "There are approximately 180 beds sitting
empty in our veterans' homes because the state has not provided enough
funding ... and there are some 800 underprivileged veterans waiting for
access to nursing home care - many with Alzheimer's disease,
"Rather than spend $1 million each year to keep the lights on and the water
running at LDC, we should put the buildings to good use and fulfill an
obligation to our veterans."
He said the lobby against using state institutional facilities for people
with developmental disabilities is a strong one.
"It's an election year," Mitchell said. "One reason to announce this in
August is so we can talk about this." He added that Republican
gubernatorial candidate Judy Baar-Topinka has been appraised of his
legislation and is supportive.
"At a recent House Republican Veterans' Task Force hearing, we learned
about the growing number of older veterans suffering from Alzheimer's
disease ..." Mitchell said. "Utilizing the four 10-bed units here at LDC to
provide 24-hour-a-day care to and for veterans with Alzheimer's disease
would help fill a void while providing an economic boost to the region."
Former Gov. George Ryan closed LDC in August 2002 and transferred the
remaining residents following allegations of abuse and neglect by staff.
Gov. Rod Blagojevich promised during his gubernatorial campaign to re-open
the facility, a promise given more credence following a deal brokered with
Sen. Larry Bomke, R-Springfield, who agreed to support Blagojevich's
controversial $10 billion pension bond sale.
The center had around 300 staff and 100 residents at its closing. Lincoln
has 11 community-based facilities, called community based living
arrangements or CILAs, for many of those former LDC residents.
Several others were transferred to other Illinois developmental centers.
Also since the closure, a governor-appointed task force that included
Lincoln Mayor Beth Davis spent more than a year studying possible options
for the grounds.
"Lincoln, in the heart of central Illinois, would be a great area to have
this," Mitchell said of his veterans housing proposal.
Four former LDC buildings were demolished and four 10-bed residences,
called Lincoln Estates, have been in various stages of development in a $7
million project. BRH Builders, with offices in Springfield and Decatur, is
the project's general contractor.
The Kickapoo Street Apartments building at the corner of West Kickapoo and
south State streets, plus the former Fuller and Drake cottages across South
State Street were among buildings demolished on the 102-acre grounds, which
still have about a dozen former LDC buildings as well.
Central Management Services administers the grounds.
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4. WASHINGTON, D.C.: District Cleansed Group Home Death Reports Court,
Council Didn't See Unfavorable Information
By Karlyn Barker
Washington Post Staff Writer
August 5, 2006
The District government has altered reports concerning deaths of mentally
retarded residents of the city's group homes, deleting damaging information
before the documents were turned over to court officials and others who
review the cases.
The deletions, discovered by a federal court monitor, included information
that described serious case- management failings; delays in obtaining
consent for medical procedures; concerns about health care; concerns about
autopsy findings and procedures; and problems getting information needed to
complete the death investigations.
One report was changed to remove several sentences critical of a case
manager's oversight, including a complaint that he had visited the resident
only once in eight years. The case manager still works for the Mental
Retardation and Developmental Disabilities Administration, according to the
court monitor, Elizabeth Jones.
Jones's interim report about the deletions, filed in U.S. District Court
this week, comes at a critical time for the D.C. government. A federal
judge is weighing a request to have the troubled agency placed in court
receivership, a move that city officials say would derail their efforts to
improve operations.
Jones frequently has faulted the city for the care and oversight of roughly
2,000 mentally retarded wards, most of whom live in group homes. In
November, she said a pattern of neglect led to four deaths since late 2004,
and she warned that other lives were in danger.
In her latest report, Jones says the city also deleted some recommendations
from the investigative contractor, the Columbus Organization, that urged
the mental retardation agency to change policies or practices to avoid
future harm to group home residents, many of whom also have physical
disabilities.
"Recommendations for improved health practices were not considered," she
writes.
Jones first raised concerns about altered reports in June, after
discovering that parts of one death report had been deleted. She then asked
that original copies of 19 death investigations be sent to her to compare
against copies circulated by the District.
Of those reports, she says in her court filing, eight had significant
deletions. The deleted material deprived oversight bodies -- including the
court, a fatality review committee and the D.C. Council -- of information
they needed to protect and improve services for disabled residents, she
says. The information also was withheld from plaintiffs in a long-standing
federal lawsuit over the District's care.
D.C. officials said the death reports are edited to ensure quality and to
correct typographical and grammar errors -- not to alter any findings.
They said yesterday that changes that appear to be substantive were made
when the Incident Management and Investigations Unit, which reviews the
reports, was part of the Department of Human Services.
In October, that unit was put under the control of the city's mental
retardation administrator, who reports directly to Brenda Donald Walker,
the deputy mayor for family issues.
"Any recommendations for changes or improvements to the reports are simply
recommendations, and it will be up to Columbus whether to accept or reject
the recommendations," said Kathy Sawyer, the mental retardation agency's
interim administrator.
The District has agreed to Jones's request that all draft Columbus reports
now be sent directly to her.
It was unclear yesterday whether the District will move to discipline
whoever made the deletions. Sawyer said she has not initiated any action.
Traci Hughes, spokeswoman for the city's attorney general, said that if the
employees are still working for the District, steps will be taken to guard
against such deletions in the future.
"The District doesn't want employees to be in the habit of providing
misleading or wholly inaccurate information," Hughes said.
D.C. Council member Adrian M. Fenty (D-Ward 4), chairman of the Human
Services Committee that oversees the mental retardation agency, called on
D.C. Inspector General Charles J. Willoughby to investigate the deletions
to determine who was responsible.
"It doesn't get any more serious than altering the records of an
independent contractor investigating deaths for the city," Fenty said in an
interview. "This is willfully keeping information from the court, from the
review committee."
A 1999 series in The Washington Post found that none of the 116 deaths in
the mental retardation system since 1993 had been investigated. The
District subsequently created the fatality review committee and hired the
Columbus Organization to investigate deaths and make recommendations aimed
at averting future needless fatalities.
In her report, Jones cites deletions that included statements about lost or
incomplete case-management records; failure to appoint a legal guardian to
make decisions on medical care; questionable medical care or lack of
information about health-care problems; and numerous recommendations for
ways to address these and other life-threatening problems.
Cathy Costanzo and Sandy Bernstein, who represent plaintiffs in the federal
lawsuit and are seeking to have the mental retardation agency placed in
court receivership, said critical information never got to the people who
could act on it.
"We don't know how many of these reports may have been changed," Costanzo
said, noting that the city has declined to give plaintiffs' attorneys
copies of the original reports.
"For us, it calls into question the integrity of the process," she said.
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5. WISCONSIN: Brown County officials see need for crisis home -- County
considers response plan, closing part of mental health center
Green Bay Press Gazette -August 3, 2006
Brown County officials are reaching agreement that a temporary crisis home
is needed for local residents with physical, developmental and other
disabilities.
The need for a home and a community crisis response plan has grown more
urgent as the county's mental health center continues to shrink. The county
is considering closing another part this winter that serves developmentally
disabled people.
"I don't believe it's good business to go ahead and close a unit without
having this plan," said county Supervisor Patrick Evans, chairman of the
human services committee.
A draft for handling crises in the disabled population shows a total
expense of $320,597, but that only includes $28,800 for leasing a duplex to
use as a crisis or respite home.
The Brown County Mental Health Center once served about 200 patients and
residents, but that number is about 90 now, following nationwide trends
toward deinstitutionalization. The County Board voted to close the center's
adolescent unit last year. Only nine remain in the unit for developmentally
disabled people.
The administration of county Executive Carol Kelso has proposed closing the
developmentally disabled unit starting in January. The board's Human
Services Committee is considering that proposal. Supervisors demanded that
Kelso's staff bring them a crisis plan before proceeding with the closure.
More than 100 people with developmental disabilities have been moved out of
area institutions -- public and private -- into smaller, community-based
homes in the last 18 months.
The crisis home wouldn't necessarily serve people moved out of
institutions. According to county staff, it would more likely serve
disabled people suddenly unable to live with relatives.
The board also heard complaints Wednesday from private companies who run
the community-based homes for disabled people. For five years, their
contracts have been increased only by one percent per year.
Lincoln Burr, director of Homes for Independent Living, said his company
runs 14 community homes with 37 people in the county's human services
programs. He said the county is risking the disintegration of its human
services programs by paying only 1 percent increases each year.
"The fact is costs are increasing. We are like any other business, we have
to pay our bills," Burr said. "I'd ask you to provide reasonable
inflationary increases so providers like us can continue to take care of
the people who are the most vulnerable in your community and pay the people
who take care of them an adequate living wage."
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6. UTAH: Advocates for mentally disabled want facility shut
August 1, 2006 - Salt Lake Tribune
In a bold but calculated move, disabled-rights advocates asked lawmakers on
Monday to close the Utah State Developmental Center, a 75-year-old
treatment facility for the mentally disabled.
The proposal, broached at a legislative task force meeting on Medicaid,
drew audible gasps from those in the audience, but received no immediate
response from lawmakers. The Developmental Center in American Fork has
survived previous attacks by backers of a decades-long movement to move the
disabled out of institutions.
But advocates believe "times have changed," and they're hoping to
capitalize on Utah's push to contain soaring Medicaid costs.
If slowing Medicaid spending is a goal, "look no further than the state
Developmental Center," Fraser Nelson, director of the Disability Law
Center, told task force members. Nelson asked the task force to explore
selling the center and putting the profits in a trust to pay for less
expensive care options, such as group homes and supervised apartments.
When the center - formerly the "Training School" - opened its doors in the
1930s, American Fork was an isolated farm town. Now it sits on some of the
most valuable land on the eastern bench overlooking Utah County, said
Nelson.
And although the center serves only about 6 percent - 235 patients - of the
4,000 Utahns receiving services through the state Division of Services for
People with Disabilities, it consumes 25 perc
ent of the division's budget.
That's $37.6 million a year, or $400 per person per day, which compares
with $75 per person daily for services delivered in people's homes or
homelike settings, said Nelson. "There is no reason these services can't be
offered in smaller settings in the community."
What's more, said Nelson, institutionalized care is "outmoded."
Though it began as a short-term training school, the Developmental Center
has evolved into a place where some people spend the majority of their
lives, said Nelson. "While the physical conditions may be less horrific
than in years past, it is still an institution. The residents do not choose
how to spend their day, what to eat or when to go to bed."
State Human Services officials disagree and contend the Developmental
Center fills a unique niche.
It serves the most severely disabled: medically fragile people with
multiple diagnoses, some of whom are violent and pose a danger to the
community, said the center's superintendent, Karen Clarke.
Clarke said most of her clients are referred by other providers with lower
staff ratios and less training. She added that, contrary to the belief that
the institutionalized remain institutionalized forever, the average length
of stay at the Developmental Center is between three months and one year.
The record of 65 years is held by a man who still inhabits the center,
acknowledged Clarke. But she said he is among a group of patients who chose
to stay following the state's 1993 settlement of the "Lisa P. lawsuit,"
which alleged people were languishing and deteriorating in institutional
settings.
Historically, parents and advocates have been bitterly divided on how to
best care for the cognitively disabled. This, the Developmental Center's
place in history and its status as a major employer, complicate any talk of
its demise.
The institution supports yet another Utah County institution, providing
decent-paying jobs with full health benefits to students at LDS
Church-owned Brigham Young University in Provo.
Clarke said the health benefits come as part of the package offered to all
state employees. Though wages may outpace those at competing nonprofits,
she said, they fall below those at hospitals with which she competes for
quality workers.
For now, lawmakers are withholding judgment. But asked whether he would
consider phasing out the Developmental Center, Rep. Jeff Alexander,
R-Provo, said, "It didn't strike me as a crazy idea."
Nationwide, policymakers looking to control Medicaid growth are examining
the long-term care industry. Senior citizens and people with disabilities
make up only 25 percent of Utah Medicaid enrollees, but consume 70 percent
of the resources.
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7. CALIFORNIA: Disabled care agency clashes with families -- Some say
bureaucracy is taking precedence over patients' best interests
Inside Bay Area -August 6, 2006
SUMMARY: This article is about families fighting against the very agencies
that were created to serve individuals and their families.
Belle Maldonado thought she had a good relationship with North Bay Regional
Center, the nonprofit agency charged by the state with coordinating her
severely mentally retarded brother's care.
Then the agency sued her.
The regional center, one of 21 set up statewide to support families seeking
care for their developmentally disabled loved ones wants her brother, Roy
Whitley, 54, to move out of the state institution where he has lived most
of his life and into a care home. Maldonado wants him to stay put.
"I would go (to his care planning meetings), I would listen, and I just
trusted everything," saidMaldonado, who lives outside of Greenfield in
Monterey County. I just believed they were doing what was best for Roy.
"The minute I started speaking up and making my wishes known, I realized
they weren't on my side. They weren't for my brother."
She has spent more than a year fighting to keep her brother at Sonoma
Developmental Center, where he remains for now, and where she says he gets
better care than he would in the community.
She is not alone. Advocates said she is one of several family members of
institutional residents who have lost their say to bureaucrats about where
their loved ones should live. They argue that there is a systematic effort
to push their loved ones out of institutions, regardless of whether it is
in the residents' best interests.
That bureaucracy, which includes the nonprofit regional centers and an
array of government-funded advocates, argues that they are required to
place developmentally disabled people in community settings, regardless of
what their families want.
In what some have cast as a David-and-Goliath struggle, the bureaucracy is
pulling from a deepening well of financial and legal resources to fight
families who rarely have what it takes to fight back.
"I think these people do believe in what they're doing," Maldonado's
attorney, Donald Querio, said at a town hall meeting that Assemblywoman
Noreen Evans, D-Santa Rosa, recently held at Sonoma to investigate the
case. "But anytime you have that kind of power, it can be abused."
Whitley, who has seizures, behavior problems and vision problems that make
it difficult for him to walk, has not said he wants to move, Maldonado
said. He cannot speak. And she says it is her job as his sister and his
court-appointed conservator to speak for him.
But the regional center -- whose executive director, Nancy Gardner,
declined comment through a secretary -- is arguing otherwise.
"There is no question Maldonado and her family feel strongly about wanting
to have the final say over whether Whitley remains institutionalized or
moves to a less restrictive community facility," the regional center's
lawyers argued in one legal filing. "However, the law simply does not give
them that right."
Back to community
Maldonado said regional center workers began pushing her to move her
brother out of Sonoma in 2001, just months after her mother died. He had
lived in the community once since moving to Sonoma in 1960, at age 6, and
that foray had gone badly, Maldonado said. It took years for her mother to
get Whitley back into Sonoma, and years more to undo the damage she said
community living did to him.
The state opened the doors for community care more than three decades ago.
But it rapidly had to empty a third of its institutions' residents to
comply with a 1993 court settlement.
A 2001 federal court case challenging some of the community moves ended
with a judge's order that eliminated the state's policy of allowing family
members to veto such moves, setting up a new legal framework in its place
that would send such disputes to local judges to handle.
Maldonado had long rejected proposals to move her brother out of Sonoma
outright, and the courts -- which review his commitment to the institutions
every two years -- agreed. But in 2005, she agreed to consider a community
placement, as long as it was near her daughters in the Santa Rosa area and
as long as her brother could return to Sonoma if things went sour.
Both those requests, she said, were ignored.
Regional center staff proposed a care home in Fairfield, which had been set
up for people moving out of the developmental center and already housed two
of Whitley's friends from Sonoma, a court filing shows. His care planning
team met and decided to move him there without Maldonado's input. She was
supposed to participate in the meeting by phone, but the team wrote her
phone number down wrong and couldn't get ahold of her. They pressed ahead
anyway.
Maldonado objected, but apparently, it was too late. Instead of talking it
over, she got court papers in the mail.
Even with the support of her family, an attorney paid for by members of
Sonoma's Parent Hospital Association and the public defender's office --
which had earlier told the court that Whitley should stay at Sonoma --
Maldonado lost.
As she appealed, the regional center sent her brother, without notifying
her, to the Fairfield care home. They called his two-week visit a
"therapeutic leave" as court documents show. The visit, they argue, shows
Whitley could be happy in the community.
Similar cases
Family advocates say there are other cases like Maldonado's, though no one
is sure how many. And some said the regional centers have quotas to move
people from the institutions, to which funding is tied.
Brian Boxall, president of Agnews Developmental Center's family group, said
the Regional Center of the East Bay pushed to move one of Agnews resident
to a care home in 2004 and 2005, finally taking a legal tack, despite the
objections of his family. He said his group has since resolved such issues
with the regional center.
"The regional center has made it clear to us that they could win these
battles easily," Boxall said. "But we made it clear to them that we would
jump and scream and call attention to these battles."
The minutes of a March 2005 North Bay Regional Center meeting show Gardner
saying the regional center needed to intensify its effort to place people
in the community over the next several months -- the time they pushed to
move Whitley -- or lose funding.
"Two new homes will be opening this month and if all goes smoothly, nine
people will leave (Sonoma) DC and move in," the minutes quote her as having
said.
Family advocates said they are at an unfair disadvantage.
"It's very, very hard to get people to really get involved in (these cases)
because they're afraid if they do that (the centers will) retaliate against
them and they'll have nothing," said Mary O'Riordan, president of Sonoma's
Parent Hospital Association.
In the fiscal year leading up to the lawsuit, the North Bay Regional Center
spent more than $135,000 on the attorneys who are now handling their case
against Maldonado, tax records show. Querio, who had a son at Sonoma and is
Maldonado's current attorney, is working for free.
Protection and Advocacy Inc., a government-funded legal aid group that was
set up to help disabled people, also is involved, writing its own letter to
the court. Ellen Goldblatt, an Oakland staff attorney who co-authored the
brief, said the group wants to maintain the gains it made in the 2001 case
that eliminated families' veto power. It isn't representing Whitley, who
Goldblatt admits she hasn't met with.
"PAI doesn't necessarily operate on a 'best-interests' standard. We look to
our clients' desires," she said.
Bob Baldo, executive director of the Association of Regional Center
Agencies in Sacramento, said regional centers are doing their jobs.
"Most people would agree that the developmental center is not the least
restrictive environment for people to live. The thrust of the (Lanterman)
act is clearly that people live in the least restrictive environment,"
Baldo said.
But Boxall disputed this. He said the act, which authorized community care,
has explicit provisions calling for family involvement in decisions about
their loved ones' care. And Maldonado argued that Sonoma, with its hundreds
of rolling acres, is the least restrictive environment for her brother.
Evans, who chairs the Assembly's Human Services committee, said she was
surprised at the depth of the problems, and concerned about an imbalance of
power between families and the regional centers.
She has pledged to further investigate and may propose legislation.
"I think it's really important people will feel they will be heard. What
I'm hearing is, that is not happening," she said.
She says institutions should be included in the state's care mix.
"The developmental center is a community, and I think sometimes we lose
sight of that," she said.
Representatives from the North Bay Regional Center, Protection and Advocacy
Inc. and the Department of Developmental Services-- the state agency that
is ultimately responsible for developmentally disabled persons' care -- all
declined to attend her town hall meeting on the case, saying they didn't
want to address an individual's case in public.
"I cannot ethically talk about a consumer in a public forum," said Terri
Delgadillo, DDS's interim director.
She said that her department's attorney told her not to discuss the case,
even though Whitley's family gave her permission to do so.
But Maldonado and some people say the state and others involved don't want
to be held accountable for their actions.
"I think they know they're wrong," she said.
To read the newspaper's full investigation of community care for the
developmentally disabled, go online to
http://www.insidebayarea.com/brokenhomes.
-------------------------------------
Tamie Hopp
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