|
************************************************************************
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.
***************************************************************************
--------------------------------------------
VOR Weekly E-Mail Update
January 12, 2007
---------------------------------------------
========================================================
1. In California, conflict is boiling over care
2. They're our family and friends" VOR responds to California article with
letter to the editor.
3. Blood on the state's hands: Reader response to California article
4. Missouri: Blunt orders Department of Mental Health to tell parents of
sex offenders
Coming Up: More Community Trouble: In Kentucky, deaths largely not
investigated - Critics see gaping hole in care of state's mentally disabled
========================================================
--------------------------------------------------------------
1. In California, conflict is boiling over care
--------------------------------------------------------------
By Clea Benson
Sacramento Bee
SACRAMENTO, Calif. - Donald Santiago's mother and sister didn't want the
state to move him out of the Agnews Developmental Center in San Jose, the
state hospital where he had lived for nearly four decades.
They feared that Santiago, severely mentally retarded since birth, wouldn't
get the medical attention he needed in the small group home the state
proposed. But state officials said Santiago had a legal right to live in a
community setting. They got a court order to move him into Justin's Home in
Union City in 2005 over his family's objections.
Santiago, 63, died of pneumonia in a Fremont hospital more than three weeks
ago.
His family says Justin's Home failed to take him to a doctor for almost a
week after he fell ill, a charge the home operator disputes.
The death of Donald Santiago - being investigated by the California
Department of Health Services - is one more flashpoint in a wrenching
battle between some parents of Agnews residents and the state, which has
been under legal pressure to close its institutions and integrate residents
with disabilities into their communities.
Following changes in state law and a U.S. Supreme Court decision requiring
community living, the number of people living in developmental centers in
California has dropped from a high of more than 13,000 in the 1960s to
about 2,900 today.
Three developmental centers have been shut down. Agnews, one of five
remaining state centers for people with developmental disabilities, is
slated to close in 2008. Only 261 residents remain.
Some family members say they fear the state is hastily moving people into
existing community homes that are ill-prepared to care for the severely
disabled and don't have medical staff on-site, as Agnews does.
Though they say they have received little encouragement from state
officials, some families also want the state to consider building a
mixed-use community where severely developmentally disabled people can
live in homes near their caregivers and members of the public rather than
in scattered houses.
"We're not defending the institutional setting," said Stephen Johnson, head
of Keep Our Families Together, an organization representing relatives of
Agnews residents. "We're saying we understand that integration is
something that needs to happen. But let's do it in a systematic way that
keeps professional caregivers involved in the lives of these clients and
above all, keeps people safe."
One parent, Michael Biggs, says a group home would be inappropriate for his
son Stephen, 47, who is severely autistic and prone to outbursts. His son's
behavior has kept him out of several group homes, Biggs said. Biggs said
his son can roam the Agnews campus freely.
"If Agnews isn't there, the next best thing would be a mixed-use facility,"
Biggs said.
Still, some disability rights groups believe the existing community homes
are working well.
"There are in fact many, many individuals living in the community with the
same levels of disability," said Ellen Goldblatt, an attorney at the
nonprofit organization Protection and Advocacy that has sued the state to
speed up the process of moving people out of institutions.
"While we think community care always needs to be improved ... we don't
believe the community care is inadequate," she said.
The state is buying homes and converting them for use by former Agnews
residents. Unlike existing community facilities, owned and operated by
private businesses, these homes will be owned by the state and staffed by
private contractors.
Eileen Richey, assistant director of the state effort to close Agnews,
described the plan as "very innovative."
In the meantime, Richey said, the state has strict standards for moving
residents into existing group homes.
"It would only be if the planning team felt that the service providers meet
all of the standards ... before a person transitions out of Agnews," she
said.
"The family is involved and has met the provider."
On rare occasions, when a family objects to the placement, the state will
go to court to force the move, "if someone at a developmental center
expresses that they want to leave," Richey said.
Donald Santiago had the mental capacity of a 2-year-old and a vocabulary of
only a few words, according to his sister, Angie Abrue. But the state
argued that Santiago had expressed a desire to leave Agnews in a 2005 court
hearing before a Santa Clara Superior Court judge.
Richey said she could not comment on a specific case, citing
confidentiality rules. But it is "extremely unusual" that the matter would
end up in court, she said.
Abrue said she and her mother objected to moving her brother because of the
record of the Justin's Home operators, Pacifico and Thelma Ruiz.
Though Justin's Home had only recently opened, another Union City facility
operated by the couple - Mika's Home - had been cited numerous times for
violating state regulations. Some citations were for failing to provide
nursing care.
Recent records show Justin's Home and Mika's Home were cited in October for
inadequate access to nursing care.
Pacifico Ruiz, in a telephone interview, said the citations were for minor
improvements that had to be made.
"Overall, the general care that we provide is far and beyond" what state
regulations require, Ruiz said.
In 2002, health department investigators cited Mika's Home after a
complaint that a resident had received emergency treatment only after he
insisted on going to a hospital.
"It was fortunate that this client could request to go to the emergency
room of his own accord," the report says, "as he required prompt medical
attention for pneumonia."
Four years later, on the day before Thanksgiving, Donald Santiago fell ill.
Being nonverbal, he couldn't tell anyone, family and friends said.
But aides at Santiago's day program noticed that he wasn't his usual self.
They sent him back to his group home and urged the staff there to take him
to a doctor, family and friends said.
Six days passed before the staff at Justin's Home took Santiago to see a
doctor, even though he was vomiting and refusing his food, according to his
sister and family advocates.
Dr. Antonio Uy, a South San Francisco physician who treats developmentally
disabled patients from several group homes owned by Ruiz and his family,
said he prescribed cough medicine and antibiotics.
In a telephone interview, Uy said there was no indication that Santiago was
sick enough to be hospitalized when he saw him.
"His color was good," Uy recalled.
But the next day, at Justin's Home, Santiago collapsed. He spent the next
couple of weeks fighting for his life in the hospital. Finally, his organs
failed. He died Dec. 11.
Ruiz said he could not comment specifically on Santiago's case, citing
state confidentiality rules. But he did dispute that there had been a
six-day delay in getting medical care for Santiago. State officials said
they could not comment while the health department is investigating.
Brian Boxall, president of the Association for the Mentally Retarded at
Agnews, a group representing families, said the court system never should
have ordered the move in the first place.
"My sense of anger is most focused on the judge, the (district attorney)
and the public defender who all orchestrated his placement knowing that his
group home operator had these kinds of citations," Boxall said. "In that
respect, Donald really was a victim of the system."
Goldblatt, whose organization has assisted others in getting court orders
but was not involved in Santiago's case, sees it differently.
"It was our understanding that he got to court because he really wanted to
move," she said. "It's tragic that he then died. It's also nice that he got
to move after so many years of living in an institution."
Meanwhile, Donald Santiago's family hopes his story helps others.
"I feel that (Donald) would still be alive if he would have stayed in
Agnews or he wouldn't have moved into this group home," Abrue said. "It's
too late for my brother now, but (not) for the other ones that are going
into the homes."
--------------------------------------------------------------
2. They're our family and friends" VOR responds to California article with
letter to the editor.
--------------------------------------------------------------
by Mary E. McTernan, President, VOR
Rolling Meadows, IL
January 5, 2007
Donald Santiago was a son, brother and friend. He is now a statistic in a
long line of unfortunate tragedies plaguing the California landscape.
Aggressive deinstitutionalization and negligible government oversight are
to blame for these tragedies. California's Protection & Advocacy Inc. is
also to blame for forcing deinstitutionalization.
Misinterpretation of the landmark 1999 Supreme Court Olmstead decision
doesn't help. Olmstead does not "require community living." The court
stated, "We emphasize that nothing in the ADA ... 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."
As taxpayers and as humane beings, we must insist that services for our
most vulnerable citizenry be adequately funded with reliable government
oversight. The benefactors of our goodwill are the people with mental
disabilities who are our relatives, friends and neighbors.
---------------------------------------------------------------------------
3. Blood on the state's hands: Reader response to California article
---------------------------------------------------------------------------
by Norman D. Clayton, Sacramento
January 5, 2007
This well-written article by Clea Benson ("Conflict is boiling over care,"
Jan. 1) says that community placement of Donald Santiago was necessitated
by a Supreme Court decision requiring community living. No such decision
was reached by the court.
Actually, a sharply divided court found that individuals in state hospitals
should be assessed to determine if they could live in less restrictive
settings. Four of the judges rejected this requirement.
Five said it was necessary and should result in the replacement of many
individuals into community settings. Implicit in the decision was an
assumption by all nine justices that the least restrictive alternative for
some individuals was their present setting, i.e. a state hospital.
From the family's point of view, Santiago was one of them. Had he been an
actual 2-year-old, no one would have argued that he could decide for
himself where he wanted to live. However, here, because he is severely
disabled and has the mental capacity of a 2-year-old, his family chose to
speak for him. The state, nonetheless, using devious means, thwarted them.
Santiago's blood is now on their hands and they now face the challenge of
avoiding repetition of this tragedy.
---------------------------------------------------------------------------
4. Missouri: Blunt orders Department of Mental Health to tell parents of
sex offenders
---------------------------------------------------------------------------
Summary: Notification process Parents and guardians of those in group homes
will be notified of a convicted offender's placement. Some will stay secret
But the placement of those not prosecuted because of a disability will
continue to remain secret.
Related News: Gov. Matt Blunt still wants to close a state-run center for
mentally retarded residents in Bellefontaine Neighbors, despite opposition
from a parents group and a task force report suggesting that such centers
stay open as long as they are needed. Blunt's unwavering position to send
Bellefontaine Habilitation Center residents to privately run homes
confounds parents. Mickey Slawson, president of the parents group, said the
state is so lax in its oversight of privately run homes that the parents
don't believe their children could be safe in them. Slawson's group
persuaded lawmakers to continue funding the center this year. A task force
convened by the governor recommended that the state not close a state-run
center "so long as there is a need for its continued operation." Slawson
said that she thinks there are not enough places to care for the remaining
residents and many people are on waiting lists to get in. She said the
parents will stand firm. "We've held on two years," Slawson said. "We're
not about to give up now." (Source: St. Louis Post-Dispatch, 12/20/2006).
By Joe Mahr and Carolyn Tuft
ST. LOUIS POST-DISPATCH
12/20/2006
Gov. Matt Blunt ordered the Missouri Department of Mental Health to start
telling parents and guardians of mentally retarded residents under its
supervision when it places a convicted sex offender in their midst.
But the department will continue to keep secret the placement of people
accused of sex offenses but not prosecuted because of their disability,
saying state and federal law prohibit them from saying anything.
The Post-Dispatch reported Monday that the state was placing people
convicted or accused of sex offenses into privately run group homes and
state-run facilities with other mentally retarded residents and was not
notifying parents of the other residents.
Blunt said Tuesday that he was concerned about the report and that he had
ordered the department to notify parents or guardians of others who share
the group home with convicted offenders. He also ordered the department to
ensure that all convicted offenders are registered with local police, as
required by law.
"As soon as we've collected the information about who those registered sex
offenders are and who should be registered as a sex offender, we should
inform those that are in some congregate living situation," he said at a
press conference in his State Capitol office.
Ron Nicholson, whose son was in a group home with a man accused of
molesting a girl, said the new policy continues to put residents at risk.
The man in the group home with his son had been determined to be
incompetent to stand trial, so parents would not be notified of his
presence under the policy.
"I think it's atrocious. I think it's indefensible and unconscionable," he
said. "They're knowingly and secretly putting known risks into group homes
with non-risk individuals."
The debate centers on about 50 people, and 31 of those are convicted sex
offenders, department spokesman Bob Bax said. In three cases, the
department discovered this week that it hadn't told police of the offender.
In the rest of the cases, the department had notified police, although
police didn't always list the offender on registries, Bax said. He said he
thought that was because not all sex offenders are required to register.
The debate comes as the Department of Mental Health already is undergoing
major changes in how it reports and investigates abuse and neglect of
residents, after a June series in the Post-Dispatch that found widespread
mistreatment of residents and inadequate investigations of allegations.
The newspaper series prompted Blunt to form a task force, which made 25
recommendations earlier this month.
On Tuesday, Blunt ordered the department to implement six of the
recommendations, most of which the department already was doing. They
ranged from continuing to notify police of deaths and suspicious incidents,
to upgrading the computer system to improve tracking of mistreatment.
State Sen. Michael Gibbons, R-Kirkwood, has proposed imposing many of the
other recommendations in a bill he filed earlier this month. Included are
increasing sanctions for abusers and lifting the secrecy on confirmed
reports of mistreatment.
--------------------------------------------------------------
Tamie Hopp
REFERRAL/MEMBERSHIP/CONTRIBUTION FORM
THREE EASY WAYS TO SUPPORT VOR > REFER, CONTRIBUTE OR JOIN
THANK YOU FOR YOUR SUPPORT!
TO JOIN OR CONTRIBUTE: $25 per individual, $150 per family organization, or
$200 per provider/professional organization. Extra donations are welcome!
You may pay by credit card or check.
TO REFER SOMEONE TO VOR: Use the form below, including the additional
sections for referrals.
Mail the completed form (if joining or contributing) with payment to:
Voice of the Retarded
5005 Newport Drive, Suite 108
Rolling Meadows, IL 60008
847-253-6054 fax (for referrals or credit card payments)
vor@compuserve.com (for referrals or credit card payments)
FOR REFERRALS: ____ The contact information provided is for someone I
think would consider membership with VOR.
FOR REFERRALS: _____ You may use my name in any correspondence with this
individual. My name is ________________________.
____________________________________________
Name
_____________________________________________
Address (if paying by credit card, use billing address). All forms must
include complete address including zip code)
_____________________________________________
City St Zip
_____________________________________________
Phone Fax
_____________________________________________
E-Mail
_________________________________________________
Family/Professional Organization Affiliation (if applicable)
VOR now accepts Master Card and Visa. If paying by credit card, please
provide the following information:
Amount to charge to card:
___$1,000 ___$500 ___$250 ___$150 ___$50 ___$25 $_____ Other amount
_____ Master Card
_____ Visa
Card Number: ___________________________________
Expiration Date: __________________________________
Cardholder's Signature: ___________________________
|
