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Plan to Join Us!! VOR 2006 Annual Meeting and Washington Initiative. See -
http://www.vor.net/VORAnnualMeeting2007.htm for complete details, including
a registration form.
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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
January 26, 2007
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1. Correction: Here's the correct website for more information about VOR's
2007 Annual Meeting:
http://www.vor.net/VORAnnualMeeting2007.htm
2.THIS THURSDAY, FRIDAY, SATURDAY Opportunity - Watch Families USA Health
Action 2007 conference via webcast - Senators Barack Obama, Edward Kennedy,
Gordon Smith, and Sherrod Brown, etc.
3. Kentucky: Deaths largely not investigated - Critics see gaping hole in
care of state's mentally disabled
4. Kentucky: VOR's Letter to the Editor in response
5. South Carolina: An Outside Set of eyes' -- New unit to protect disabled
adults
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1. Correction: Here's the correct website for more information about VOR's
2007 Annual Meeting:
http://www.vor.net/VORAnnualMeeting2007.htm
---------------------------------------------------------------------------
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In last week's issue of the VOR Weekly E-Mail Update, I published
information about VOR's 2007 Annual Meeting and Washington Initiative, June
8-12, in Washington, D.C. The website address given contained a typo -
there was a "/" missing. Here's the correct address:
http://www.vor.net/VORAnnualMeeting2007.htm
Sorry for the confusion.
Please Join Us!
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2.THIS THURSDAY, FRIDAY, SATURDAY Opportunity - Watch Families USA Health
Action 2007 conference via webcast - Senators Barack Obama, Edward Kennedy,
Gordon Smith, and Sherrod Brown, etc.
---------------------------------------------------------------------------
Did you want to come to our Health Action conference this year, but for
some reason couldn't make it? Now you can watch our conference plenary
sessions, as they happen, from the comfort of your desktop! Starting this
year, we will webcast our plenary sessions LIVE over the Internet. To watch
our plenary sessions live over the Internet, simply follow this link:
HEALTH ACTION 2007 WEBCAST
http://ga3.org/ct/H1AHWJs1SXoG/Webcast
Just because you won't be in Washington this week doesn't mean you have to
miss all the action! With our new webcast, you can watch SENATORS BARACK
OBAMA, EDWARD KENNEDY, GORDON SMITH, and SHERROD BROWN, along with other
prominent health care advocates, address the health care issues we all care
about. To check for the days and times of specific plenary sessions, see
the
conference program online: http://ga3.org/ct/TpAHWJs1SXoH/Program
[* Saturday plenary sessions may not be available via webcast. Please check
on Saturday for availability.]
We hope you'll take some time on Thursday (Jan. 25), Friday (Jan. 26), and
Saturday (Jan. 27) to join us online!
Luis Hestres - eAdvocacy Coordinator, Families USA
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3. Kentucky: Deaths largely not investigated - Critics see gaping hole in
care of state's mentally disabled
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By Beth Musgrave
Lexington Herald-Leader
Jan. 7, 2007
She started crying shortly after 8:30 p.m. Her stomach hurt, she said. She
couldn't sleep.
Staff at the group home in Christian County who were paid to take care of
the mentally retarded woman gave her Pepto-Bismol and checked her blood
sugar. By 11 p.m. she was unresponsive. By 10:45 the next morning, March
21, 2005, she was dead.
Doctors at a Hopkinsville hospital suspected that an untreated infection
shut down her kidneys, according to state documents.
But no one will know for sure what happened or whether the woman's death
could have been prevented. According to state documents, no autopsy was
done. The Department for Mental Health and Mental Retardation, which
polices community-based services for the mentally disabled, did not
investigate.
The woman, whose name was not released, is one of thousands of mentally
disabled people who received care in group homes paid for by Medicaid. And
she is one of 146 people who died over the past five years in the Supports
for Community Living program, a network of 137 agencies that provides
community-based services such as housing and counseling to 2,874 mentally
disabled Kentuckians.
Since 2001, the state has initiated on-site investigations in only 18 of
the 146 deaths in the community living program, a Herald-Leader
investigation found.
Long-term mortality rates for mentally disabled people in community
facilities are unknown. The department only started tracking deaths of the
mentally disabled in the community in 2001.
Thirty-eight of the 146 deaths since then were unexpected or sudden,
according to the reports providers sent to the department. Those deaths
include a woman who came back from a short walk, collapsed and later died.
In another case, a man slumped over at the breakfast table, uttered the
words "Oh me!" and stopped breathing. Four people died after choking. Nine
died of cancer, and in at least two cases the cancer was detected too late
to treat.
If any of those 146 people had died in a state institution in Kentucky or
if they had died in similar community- based programs in other nearby
states, their deaths would have been investigated. Ohio investigates every
such death. Indiana investigates all unexpected or sudden deaths as well as
deaths caused by pneumonia or choking. Both states have panels that review
all deaths of the mentally disabled who receive community- based services
to detect problems, trends and possible wrong-doing on the part of
providers or family members.
Those who receive services in the community die at roughly the same rate as
those who live in Kentucky institutions, statistics show. Yet deaths in
state-run institutions trigger an automatic investigation by the Office of
Inspector General with the Cabinet for Health and Family Services. Kentucky
Protection and Advocacy, a state agency charged with representing the
mentally handicapped and mentally ill in Kentucky, is also notified of all
deaths in institutions. A mortality review board, made up of doctors and
other specialists, also reviews all deaths in institutions.
But the same review process doesn't apply when deaths occur in Kentucky's
privately run, community-based care facilities. In those cases, only deaths
deemed suspicious trigger an on-site investigation. Staff from the
Department for Mental Health and Mental Retardation, a department with the
Kentucky Cabinet for Health and Family Services, say all deaths are
reviewed, and some of the 146 deaths did trigger other follow-up besides an
on-site investigation.
Still, the lack of in-depth investigation of deaths in the community is a
gaping hole in Kentucky's protection of the mentally disabled, said Marsha
Hockensmith of Kentucky Protection and Advocacy.
"It's about improving the quality of care," said Hockensmith. "One big
reason to investigate these deaths is to make sure that you don't have a
staff person who is doing something wrong."
The issue takes on added weight because the Supports for Community Living
program, which began more than two decades ago to move people from
traditional institutions into the community, will only grow. More than
2,800 people are on the waiting list for services.
Meanwhile, more residents are moving out of the troubled Communities at
Oakwood in Somerset -- the state's largest institution for the mentally
retarded -- and into community care. And the state estimates that as many
as 10,000 mentally retarded people are living with aging parents and may
soon need more intensive, community-based services.
Community care is also big business. Medicaid pays on average $60,000 a
year per resident to community care providers.
But before the system gets bigger, it needs to get better, advocates say.
Information not shared
A thorough review of deaths could help care providers know what to watch
for and possibly prevent other deaths, Hockensmith and some providers say.
But providers say information gleaned from investigations isn't always
passed on to them.
In 2003, Robert Gene Diamond, 28, died at a staffed home in Laurel County
after being placed in prone restraint -- meaning he was placed face down
and held by two staff members -- after he tried to run out the door of his
home. That technique had already been banned in many states after a 1999
report by the U.S. General Accounting Office linked the use of prone
restraint to deaths.
Two years after Diamond's death, Todd Johnson, a 34-year-old mentally
disabled man, died at a group home in Morehead after being placed in prone
restraint.
It was only after Johnson's death that the Department for Mental Health and
Mental Retardation banned the use of prone restraint in community homes.
Tammy Woody, who later took over as executive director at New Foundations
in London where Diamond died, said that until Diamond's death she never
would have thought that prone restraint could lead to death. Woody and
other providers the Herald-Leader spoke to were often unaware of the
results of investigations into deaths at other agencies. Woody and
Hockensmith say that's important information that could help providers.
"The more information that we have, the fewer mistakes we make," Woody
said. "I think most injuries are truly accidental. We want to know what we
can do better."
Betsy Dunnigan, of the Department for Mental Health and Mental Retardation,
said that after Diamond's death the department encouraged providers not to
use prone or supine restraint and told providers it was because there had
been a death. The department is trying to use quarterly meetings with
providers to pass on more information, she said. But those meetings are not
mandatory for providers.
Dunnigan said all deaths are reviewed by staff and some trigger follow-up,
including phone calls and technical assistance. Of the 146 deaths, at least
30 involved some other follow-up besides an on-site investigation,
department records show. The department is also working to try to get the
mortality review panel, which reviews all deaths in institutions, to look
at deaths in the community.
The biggest obstacles to expanding the responsibilities of the mortality
review committee have been money and time, Dunnigan said.
The department also recently added more staff to review cases involving
death and other serious incidents including hospitalization. It also has
revamped its database to better track problems and incidents.
Department nurses reviewed the death of the woman who had complained of a
stomachache and found that staff in the home had responded appropriately --
they had checked the woman's blood sugar and called paramedics when she was
unresponsive, Dunnigan said. The department decided not to investigate. The
coroner ruled that the woman who collapsed after taking a short walk,
probably died after a blood clot from her leg traveled to her heart. There
was no way that the staff could have predicted that would happen, and the
department decided not to investigate, Dunnigan said.
Poor training
The cases in community homes that have prompted investigations show some
disturbing trends. Staff are sometimes poorly trained to perform basic,
life-saving procedures, a review of the investigations shows. Of the 18
investigations, department investigators found that an agency did something
wrong and issued citations in 10.
In many cases, the department had cited the agency in previous annual
reviews for similar problems. And in one death investigation, department
investigators suspected that the agency might have tried to cover up
possible wrongdoing on the part of its staff by leaving out key
information, a charge the agency denies.
In at least four investigations, staff either failed to perform life-saving
procedures or were negligent in providing basic health care.
On Jan. 1, 2003, Mary Beth Fryrear, 23, who had trouble swallowing, choked
on a piece of tangerine that she wasn't supposed to have. Staff at the
privately run Community Alternatives Kentucky home in Elizabethtown where
she lived performed abdominal thrusts and struck Fryrear on the back to try
to clear her airway. But they failed to perform CPR when Fryrear lost
consciousness, the department investigation showed.
The coroner ruled that Fryrear choked to death. The emergency room doctor
found chunks of tangerine in Fryrear's throat, the autopsy showed.
In another case, Linda Gayle Whitt, 53, fell outside her Lexington staffed
residence on a frigid February day in 2006. She was left on a cold driveway
for almost 45 minutes, investigators believe. It wasn't until three and a
half hours after Whitt fell that she received medical attention for
hypothermia. She later died of complications from surgery to warm her
blood.
Community care providers say that although there have been mistakes in the
past, staff members are adequately trained. Sometimes, they said, no amount
of training can prepare a staff member for a crisis.
The staff member who failed to perform CPR on Fryrear was a former military
combat nurse, said Dan Baker, an administrator at Community Alternatives
Kentucky, a division of ResCare, a Louisville-based company that operates
13 Community Alternatives providers in Kentucky. ResCare is one of the
largest providers of community-based services in the state.
"We can try to train and retrain, but you don't know how people are going
to react until they're actually in the situation," Baker said.
The home where Todd Johnson died after being placed in prone restraint was
also operated by Community Alternatives. In that case, investigators said
that staff members who restrained Johnson were not properly trained in the
technique. Company officials dispute that finding.
Baker said the Community Alternatives homes were using restraint techniques
that were approved by the state. After Johnson's death, the company
developed its own restraint curriculum and banned prone restraint in its
homes.
Rose Johnson-Bohr, Todd Johnson's mother, said she does not blame the staff
at the Morehead residence for what happened to her son. Johnson, who had
brain and central nervous system disorders, sometimes became violent and
manic for no apparent reason and had been restrained on other occasions,
she said.
"I think they did what they had to do and they did it in Todd's best
interest and in the best interest of everyone in that home," Johnson-Bohr
said. "I have nothing but admiration for them. They are the ones that take
care of people that most of society has shunned, and they don't make a lot
of money doing it."
Providers say the state's death investigations don't show how many times a
quick-thinking employee saved the life of a person in community care. Or
the number of times staff members advocated for changes in medication or
more tests that ultimately saved or improved the quality of life of people
they care for.
"In the last three years, throughout our agencies, there were at least 16
incidents where we have performed life-saving measures that have saved
people's lives," Baker said. "Those are the kinds of thing that you don't
hear about, that we don't get measured on."
Failing to fix problems
Department of Mental Health and Mental Retardation records show that
agencies can struggle, sometimes for years, to fix problems after a death.
The Community Alternatives facility in Elizabethtown was cited for failing
to turn over all of its internal investigation to department investigators
in Fryrear's choking death. The facility was also cited in follow-up
reviews for failing to report incidents to the department, turning over
information late and for failing to train staff.
After receiving the agency's initial report, state investigators were not
going to launch an on-site investigation of Fryrear's death. The state did
identify some training issues and recommended technical assistance.
According to department documents, investigators received an anonymous call
saying that the report was incomplete and had been altered at the direction
of company administrators. Department investigators asked for the full
report from the company's internal investigator, but the agency refused,
saying it was protected by attorney-client privilege.
When questioned by state investigators, the company's internal investigator
admitted that there were "holes in the report," which did not include
conflicting information from the three staff members who were present when
Fryrear died.
Baker adamantly denied that anyone at ResCare or Community Alternatives
Kentucky tried to alter the internal report so the department would not
initiate an investigation.
The company's Elizabethtown facility, in follow-up annual surveys,
continued to have problems with reporting information to the state, records
show. Baker acknowledged that there had been problems at Elizabethtown over
the years. "We have made significant changes there," Baker said. "We have
changed leadership. Over a period of time, there was staff that needed to
change, and that was done."
Other providers have also struggled to correct problems after being cited
by the state.
New Foundations, where Diamond died, was also cited in follow-up annual
certifications for its use of restraint. Woody said New Foundations has
spent thousands of dollars retraining staff on crisis behavioral
management. Restraints -- physical holds of any kind -- are way down at New
Foundations homes, Woody said. In its last annual review, the agency
received no citations, which is rare.
Department for Mental Health and Mental Retardation officials say they
realize that getting providers to make corrections sometimes takes too
long.
Dunnigan said the state wants providers to stay open. Thousands of people
are waiting for community-based services. "We always focus all of our
efforts on monitoring and technical assistance to help the provider make
the correction and stay in business," she said.
The department has terminated agencies for poor performance in the past.
Over the past five years it has terminated 10 providers and is in the
process of terminating an 11th.
The department has revamped its orientation process for new providers, and
is working to post information online so consumers can make wise decisions
when picking a care home. Many of the providers involved in death
investigations were not allowed to accept any new clients until the
department was confident that changes had been made. The department is also
looking at other ways to increase compliance, including monetary sanctions.
"There are a lot of discussions, nothing has been finalized," Dunnigan
said. "Typically, if you don't go after their money, it takes longer to get
corrections made."
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4. Kentucky: VOR's Letter to the Editor in response
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Submitted: January 11, 2007
Letter to the Editor Submission
Lexington Herald-Leader
Kentucky's community-based system of care is in crisis. Without serious
reform, the current practices, whatever they are, will continue to fail its
most fragile citizens with mental retardation (Critics see gaping hole in
care of state's mentally disabled, Jan. 7).
Over the past five years, 6% of the people being served in Kentucky's
Supports for Community Living waiver program have died. Of those who have
perished, 26% have died suddenly or unexpectedly. Alarmingly, the Supports
for Community Living waiver program is projected to grow.
In 2003, the GAO (the U.S. General Accountability Office) published a
report titled, "Federal Oversight of Growing Medicaid Home and
Community-Based Waivers Should be Strengthened." Kentucky would be
well-advised to read this report and pursue immediately reforms, including
the plan that community deaths be among those investigated by the state's
Mortality Review Board.
As taxpayers, we must insist that reforms be pursued now and that services
for our most vulnerable citizenry be adequately funded with reliable
government oversight. The benefactors of our good will are the people with
mental disabilities who are our relatives, friends and neighbors. Until
basic reforms are instituted, tragedies will predictably continue.
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5. South Carolina: An Outside Set of eyes' -- New unit to protect disabled
adults
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By RODDIE A. BURRIS
TheState.com
January 17, 2007
A special victims unit created to handle reports of abuse, neglect and
exploitation of disabled adults should be up and running by the end of
January. The Vulnerable Adults Investigations Unit will function through
the State Law Enforcement Division under a new law passed in 2006. It aims
to ferret out instances of abuse and even death that some advocates for the
disabled and lawmakers fear state agencies have ignored or swept under the
rug for years.
"There was interest in having an outside set of eyes looking at complaints
and allegations, and that's what we'll be doing," said SLED Chief Robert
Stewart.
The agency has assembled and trained 12 experienced agents to staff the new
unit, which will be headed by Capt. Patsy Lightle, who led child-fatality
investigations for SLED for several years and has nearly 30 years of
service with the agency.
Previously, the Mental Health and Special Needs departments have handled
abuse investigations internally, using their own public-safety
authorities.In addition, Special Needs operated using a different
definition of abuse than will be followed under the new law, in which the
term simply refers to physical abuse or psychological abuse.
SLED now must investigate all suspicious deaths that occur within
facilities operated by or under the Department of Disabilities and Special
Needs and the Department of Mental Health.
The scope of the new law also covers adults who may be receiving care in
private homes contracted through the agencies.
A special 24-hour hot line will be set up in all institutional homes and
hospitals run by the two agencies to report allegations of misbehavior.
"The most important thing is to make sure (incidents) get reported,"
Lightle said.
Recent legislation has sought to secure for the disabled many of the same
rights and protections enjoyed by other S.C. residents. Advocates teamed up
with legislators to get the unit approved by the General Assembly.
"Abuse, neglect and exploitation of vulnerable adults are crimes," said
Gloria Prevost, executive director of Protection and Advocacy for People
with Disabilities, which is charged with protecting the rights of the
disabled in South Carolina.
"With the unit at SLED becoming operational, the Department of Mental
Health and the Department of Disabilities and Special Needs and their
contract agencies will no longer be able to investigate themselves," she
said.
Lawmakers appropriated $1.3 million to get the new unit up and running and
$780,000 in recurring money to operate it. It will be responsible for
determining whether allegations of abuse, neglect or exploitation are
criminal or civil.
The unit will investigate the alleged criminal activity reported or refer
the allegations to appropriate local law enforcement agencies such as a
sheriff's office, local police or county prosecutor. Reports the unit
identifies as noncriminal will be directed to the state Long Term Care
Ombudsman Program or the Department of Social Services. The attorney
general's office will determine whether legal action is necessary in cases
involving deaths, Medicaid fraud or financial exploitation.
The Special Needs and Mental Health agencies say they support the new law.
Special Needs has issued a directive to its employees in light of the new
law, and Mental Health plans to train its employees to comply with the law.
"We're pretty optimistic it will work," said Mark Binkley, legal counsel
for the Mental Health Department, which operates three hospitals and four
nursing homes and extends care to individuals in more
than 200 private homes in South Carolina.
"We think the problem (with the old procedure) was one of appearance that
the department shouldn't investigate itself. "I don't think the agency has
ever covered up anything."
__________________________________
Tamie Hopp
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TO REFER SOMEONE TO VOR: Use the form below, including the additional
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