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VOR Weekly E-Mail Update
August 29, 2008
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Contents
1. DD Act Proposed Regs – Electronic Submissions Update
STATE NEWS
2. OREGON: Abuse and Neglect Reports Shows Higher Numbers
3. OREGON: State Reviews Fairview Transition
4. CALIFORNIA: Budget cuts gut disabled worker bill
5. NEW MEXICO: Suit Now 21; Taxpayers’ Bill $4M a year
6. NEBRASKA: Committee hears testimony about Beatrice center
7. KENTUCKY: State Seeks Medicaid Funds for Oakwood
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1. DD Act Proposed Regs – Electronic Submissions Update
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In last week’s update, we shared with members the opportunity to
submit comments in response to proposed DD Act regulations.
Here is an update on how to submit your comments electronically:
http://www.regulations.acf.hhs.gov.
Good luck and thank you.
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2. OREGON: Abuse and Neglect Reports Shows Higher Numbers
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Source: Perspectives –MR/DD Advocacy
Date: August 2008
Editor: Sid Stuller, Oregon VOR Coordinator
The OIT (Office of Investigations and Training) annual
abuse/neglect report document for the year 2007 was released in
June. It revealed that abuse and neglect increased in volume in
the past year. In 2006, 1583 incidents of abuse were alleged and
682 of these were proven for a rate of 43.1%. In 2007, the
number of incidents increased to 1857, of which 790 incidents of
abuse were proven for a rate of 43%.
Chief among the types of abuse was neglect, which resulted in
the deaths of two persons with MRDD, followed by financial
abuse, and physical abuse. Other types of abuse reported
included sexual abuse, restraint, restriction, and verbal abuse.
Most of the abusers were care-givers, who are charged with
protecting the vulnerable residents, according to previous
reports.
What about EOTC – the only ICF/MR left in Oregon? In some
categories of abuse, none was reported. In all categories, EOTC
has an average of five confirmed abuse cases per year for the
past five years. In 2007, there were eight confirmed abuse
cases, but the least of any type of residential category about
which OIT reports.
What about improvements to the system? The OIT worked with the
MFCU (Medicaid Fraud Control Unit) of the Oregon Dept. of
Justice, which secured a restitution of $72 000 in one case and
a 12 month jail sentence in another case. Those convicted can no
longer be employed as caregivers for elderly or disabled
persons.
A full copy of the OIT 2007 Abuse/neglect report may be obtained
on-line at http://egov.oregon.gov/DHS/data
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3. OREGON: State Reviews Fairview Transition
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Source: Perspectives –MR/DD Advocacy
Date: August 2008
Editor: Sid Stuller, Oregon VOR Coordinator
A workgroup designed to further the MFP program (Money
Follows the Person) has been reviewing the way folks were moved
out of Fairview [State Operated Center], and a document now is
available online detailing what worked and what didn’t work.
The document says what didn’t work was that managers relied on
direct care staff for critical information. There was “no
provision for staff turnover nor how to train newly hired
staff.”
There was nothing about the lack of group home supervision or
administration on weekends, no mention either of the lack of
unannounced “drop-in visits” to see if the lowly trained staffs
were doing their jobs.
Not one word was mentioned about the results, which the
Oregonian published last November, and which detailed that one
out of every five persons in state licensed care has suffered
abuse. The purpose of all this reviewing is ??? Speculation has
it that they want to do a better job of forced removal of
residents from Eastern Oregon Training Center in a few years.
See: http://www.oregon.gov/dhs/spd/mfp/dd/index/shtml (Follow
links to DD workgroup)
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4. CALIFORNIA: Budget cuts gut disabled worker bill
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Summary: California Assembly Bill (AB) 2424 which sought to
bring many more people with developmental disabilities into the
work force has failed citing the state’s budget concerns. But
cost was only one issue. Another concern voiced by “choice”
advocates was the bill’s presumption that an individual wants to
live and work in ordinary settings among the general population.
Critics said no one should presume where people want to live and
work, calling that a choice for the individuals, their families
and conservators to make. "People with developmental
disabilities have a whole range of desires and wants and needs
and likes and dislikes," said Theresa DeBell, president of
California Association of State Hospital Parent Councils for the
Retarded, a group of relatives and friends of residents in the
state-run institutions known as developmental centers. The
California Association of Psychiatric Technicians, which
represents 3,000 workers in the developmental centers, also has
objected.
By Kathleen Wilson
Monday, August 4, 2008
Ventura County Star
A bill seeking to bring many more developmentally disabled
adults into the work force has been cut back in the face of
budget concerns.
The bill, which goes to a key hearing today before the Senate
Appropriations Committee, had called for major new efforts to
bring California adults with developmental disabilities into
regular jobs.
But at a cost of $2 million and a state budget in crisis, the
bill had to be rolled back, officials said Friday.
"Any bill with money in it this year is in danger of dying,"
said Jordan Lindsey, director of public policy for Arc of
California, a state advocacy group for developmentally disabled
people.
At issue was not only the cost of AB 2424 but also the
presumption that an individual wants to live and work in
ordinary settings among the general population.
About 70 percent of adults with developmental disabilities are
unemployed and many have said they want to work in the
community, not sheltered workshops.
In hearings held over a year and a half on the state's system
for the developmentally disabled, gainful employment was the No.
1 issue, Lindsey said.
"People said we want to work, we can work, we are good workers,"
he said.
But critics said no one should presume where people want to live
and work, calling that a choice for the individuals, their
families and conservators to make.
"People with developmental disabilities have a whole range of
desires and wants and needs and likes and dislikes," said
Theresa DeBell, president of California Association of State
Hospital Parent Councils for the Retarded, a group of relatives
and friends of residents in the state-run institutions known as
developmental centers.
The California Association of Psychiatric Technicians, which
represents 3,000 workers in the developmental centers, also has
objected.
A variety of groups representing disabled people and special
education groups, though, supported it.
The bill would have established an Employment First Policy,
required the state to implement it, and established a startup
fund.
But that has been rolled back into what's being called an
employment opportunity initiative.
"It's now a much more modest bill," said Eric Gelber, chief
consultant to the Assembly Human Services Committee chaired by
the bill sponsor, Assemblyman Jim Beall Jr.
Gelber said the current version would establish priorities for
employing the developmentally disabled and require information
to be collected showing their representation in the work force
and the barriers they face.
"We see this as setting the groundwork for other things in
future," Gelber said.
The bill is intended to update the Lanterman Act, a nearly
40-year-old law focusing on people with disabilities such as
mental retardation, cerebral palsy, autism, epilepsy and
traumatic brain injury. About 110,000 adults receive services.
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5. NEW MEXICO: Suit Now 21; Taxpayers’ Bill $4M a year
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Sunday, July 20, 2008
By Mike Gallagher
Albuquerque Journal
The federal civil rights lawsuit that led to the closure of
two state hospitals for developmentally disabled people more
than a decade ago entered its 21st year this month. Nobody held
a birthday party.
The case, which at times has been acrimonious, is costing the
state more than $4 million a year in legal fees, compliance
monitoring and administrative expenses.
Earlier this year, Senior U.S. District Judge James Parker
appointed an expert to report to the court on what progress is
being made on the remaining issues.
The expert's budget for the first three months of the year:
nearly $90,000.
State officials can't say how much has been spent on legal and
administrative costs since the case began. They did come up with
a number since 2003. That amount is about $19 million.
These costs don't include any expenses related to direct care of
the developmentally disabled.
The lawsuit was filed in 1987 over living conditions and lack of
treatment of developmentally disabled people at the state
hospital and training schools in Los Lunas and Fort Stanton. The
state fought the case but lost at every turn until 1997 when
state officials agreed to a stipulated judgment and plan to care
for the hospital patients in community settings.
Parker didn't order the two institutions to shut their doors.
The state decided to close them after so many clients were
transferred to community settings that the facilities were no
longer economically viable.
Despite its costs, the litigation known as Jackson V. Fort
Stanton et. al. , is a lawsuit where courtroom activity is
sporadic. The issues are dealt with mostly in audit reports,
memoranda and meetings among the parties.
Changing standards
Dr. Alfredo Vigil, secretary of the Department of Health, said
the state has faced a challenge in complying because the
standard of care for the developmentally disabled has changed
over the years.
"Care for the developmentally disabled has evolved very
rapidly," Vigil said. "The complexity of that care and the
standard of that care moves quickly."
Translated to lay terms, that generally means care that might
have been acceptable 10 years ago no longer is.
Vigil has been secretary of the Department of Health for about a
year and has tried to change the tone of the case. A new
attorney, Jerry Walz, has been hired to bring the case to a
resolution.
Over the last 11 years, in fits and starts, the state has
managed to meet about 64 percent of the goals laid out in the
1997 agreement and plan to end court oversight.
Vigil said the state at one point reached a plateau where there
was little movement in reaching the goals laid out in the
agreement.
Others said the state was almost "frozen" for several years in
its ability to move forward on meeting the goals outlined in the
agreement .
One attorney for disabled clients, Maureen Sanders, said
turnover at the top levels of the Department of Health has led
to each new administration having a learning curve.
During an interview with the Journal, Vigil made it clear he is
committed to moving forward to a successful conclusion of the
case.
Steps outlined in the agreement cover everything from staff
training to oversight of contract providers who actually do the
daily work to systems for uncovering and reporting abuse.
"When it started there was a fairly confined scope from a
technical point of view," Vigil said. "Make sure they are not
abused or neglected. Make sure their nutrition has been
maximized. A few things were clear goals.
"The goals have now expanded hugely and to a great degree
appropriately."
One attorney representing developmentally disabled clients says
the state's argument about moving targets would have more
credence if it had met even the original goals.
There are between 360 and 370 people in the state system who
were original members of the lawsuit, which is called the
Jackson Case after the lead plaintiff Walter Stephen Jackson.
But the state provides the same level of care for all 3,700
people in the system at a cost of more than $70,000 a year per
person. The total, much of it federal money, exceeds $250
million a year.
Despite that, another 3,700 people with developmental
disabilities are on a waiting list for services from the
department — a practice advocates are challenging in court. They
argue the people on the list are entitled to services now.
State officials said they would prefer that the money being
spent on the Jackson lawsuit be directed to providing services
to those on the waiting list.
‘Moving target'
In the past there has been debate over whether the attorneys who
brought the suit are creating a "moving target" or setting the
goals the state must attain at an unreasonably high level.
One of the only attorneys not getting paid by the state is
Sanders, who represents an intervenor in the lawsuit, The ARC of
New Mexico, the guardian for about 70 members of the Jackson
class of plaintiffs.
"They can complain about moving targets all they want," Sanders
said. "They haven't come close to hitting the original target."
Vigil said it is the job of those representing the
developmentally disabled to challenge the department, and he
expects them to raise the bar on the quality of care their
clients receive.
He says the goals for people in state care evolve because
advances in medicine and technology have meant improved and more
meaningful lives for people with even the most profound
developmental disabilities.
One area of debate surrounds the issue that each person in the
state's care have a "meaningful day." In some instances that may
mean the person goes to a job. For others it may mean pet
therapy.
The definition of "meaningful day" is different for each
individual and is not dictated by the state but the individual
and the treatment team. It is the subject of constant
discussion.
But the state is running into some more concrete problems beyond
its control.
"We have a shortage of primary care physicians and dentists in
the state," Vigil said. "And not every dentist or primary care
physician that might be available feels capable of treating
people with severe disabilities."
That makes reaching the goal of having access to dental and
medical care difficult.
Others say the department acts quickly when informed of problems
with individual clients, but the system of identifying those
problems is an area the state needs to improve.
Vigil and Walz said they are committed to bringing the lawsuit
to an end within two years.
Sanders says that's close but not quite possible.
"If they made a concerted effort," she said, "they could get out
from the case in about three years."
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6. NEBRASKA: Committee hears testimony about Beatrice center
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Summary:
About a dozen parents and siblings of people living at
Beatrice State Developmental Center got their chance to defend
the place their loved ones call home during the daylong
legislative public hearing. State senators on the committee also
heard from some who want the center closed.
Here is a good blog comment posted in response to this story:
" We spend so much time on BSDC versus community-based services
that we prevent ourselves from completing a reliable root cause
analysis of the statewide system of services. The problem is
gaps in service quality and there are examples in both BSDC and
community-based services. The discussion should be about the
best design for a continuum of services. Just as acute medical
hospitals provide a different level of care than out-patient
clinics, BSDC's level of care is different community-based level
of care. Some people need BSDC, some need transition services
and some need community-based services. Some people need the
ability to move back and forth as needed. I expect that system
redesign may sound too much like something that may cost more so
we will bury the idea and keep the focus on which is better,
BSDC or community-based. Too bad, there may be some design
efficiencies out there that would actually make both services
less expensive and more appropriate to meeting the needs of
Nebraskans with developmental disabilities."
By NANCY HICKS
Lincoln Journal Star
Thursday, Aug 21, 2008
Sandra Ham’s teenage son Ian started running away when he
lived in Lincoln group homes.
Once he caused a ruckus at a convenience store late at night,
his mother said. The police who responded thought he was on
drugs. They stepped on his bare feet while handcuffing him. Then
they noticed his medic alert bracelet.
The officers returned Ian to his group home, where the staff
member responsible for watching the clients was asleep.
It was just one example Ham presented Thursday to a Legislative
committee of how the Beatrice State Developmental Center is the
best place for her son and others like him.
About a dozen parents and siblings of people living at BSDC got
their chance to defend the place their loved ones call home
during the daylong legislative public hearing. State senators on
the committee also heard from some who want the center closed.
Ham told the committee of another time when Ian left at night,
in the dead of winter. He was located after an intensive search
— with help from police and the local TV station — miles from
his home.
Then there was the day a group home staff member was stopped for
drunk driving, with Ian in the car. This was the same staff
member who was responsible for Ian’s blood testing, his insulin
dosage and his meal preparation, Ham said.
After three years of living in group homes run by two different
community agencies, Ham finally got Ian into BSDC — where there
is always staff on duty, where there is a nurse on call, where
there is constant oversight, she said.
“He now has the care that group homes could not or would not
provide,” she told the committee.
It is the safest place for her son and others with more
demanding medical needs and who exhibit at-risk behaviors, she
said.
Other supporters praised the state institution, the long-term
loving staff members who watch over adults with the capabilities
of a toddler, the special program for teens and adults with
serious behavior issues, the community atmosphere where
everything from the doctor to the swimming pool is just a short
walk away.
Some told horror stories about community programs where staff
members slept while their children wandered the streets, or
watched TV rather than watch over the residents. Where there was
not enough staff to give high-need clients one-on-one
supervision, where staff weren’t able to handle people with
serious behavior or medical problems.
And they suggested community programs should have the same
scrutiny that occurs at Beatrice, where investigators from
several federal agencies have spent weeks observing life at the
center.
The reports from those agencies citing serious, specific
instances of abuse, neglect and staffing shortages at BSDC led
to creation of the special committee, with Omaha Sen. Steve
Lathrop as its chairman.
The state faces the loss of about $28.6 million a year in
federal funds for the center, which currently cares for 263
Nebraskans with serious developmental disabilities. The center
is also being monitored under a federal court order.
Senators also heard Thursday from some who want BSDC closed.
Beatrice is an “outmoded, outdated institution” that “violates
the rights of people living there,” said Mary Angus, lobbyist
for the ARC of Nebraska, an advocacy group for people with
disabilities and their families and friends.
“We believe the reasons BSDC has remained opened are political.
... Because it is best for the community, not because it is best
for the residents,” she said.
People with severe disabilities also live successfully in local
community programs, she said. Sixty percent of the adult
Nebraskans with profound mental retardation are served by such
programs, she noted.
BSDC uses up 18 percent of the state’s funding for developmental
disability services, but serves only 6 percent of the people
getting services, she said. It “misuses scarce resources.”
Chairman Lathrop commented on the obvious philosophical split
between Beatrice center supporters — who want to make certain an
institutional choice exists — and groups like ARC of Nebraska —
that would like to see the Beatrice campus eventually closed and
its $52 million in state and federal funding used for community
programs.
“It seems to me this is not a black and white issue. That there
is room for both (community programs and institutional
programs),” Lathrop said.
Angus gave another option. Everyone could be served in community
programs if the state increased the quality and the breadth of
community services, she said.
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7. KENTUCKY: State Seeks Medicaid Funds for Oakwood
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By Sarah Vos and Beth Musgrave
Lexington Herald-Leader
August 29. 2008
The state has applied to receive Medicaid funding for Oakwood,
the historically troubled state facility for mentally disabled
people in Somerset.
Oakwood lost its Medicaid funding in May, and the state began
paying the full cost to run the facility, about $6.5 million a
month.
Janie Miller, secretary of the Cabinet for Health and Family
Services, announced Thursday that the state had submitted an
application for recertification by the federal government.
"The application begins the formal recertification process,
which includes two unannounced surveys," Miller said in a
statement.
The first inspection by the federal Centers for Medicaid and
Medicare can happen any time after the application is filed. The
second survey occurs 30 to 120 days later.
The state needs federal money to help pay its bills.
The state has budgeted $78 million for Oakwood; about $70
million of that money goes to directly to Bluegrass Regional
Mental Health-Mental Retardation Board, which has a contract to
manage the facility. But the state will be out of money for
Oakwood sometime before the next fiscal year, which begins July
1, Miller said
Miller said that, once the money runs out, it is unclear what
will happen to the state-run facility, where 214 people with
mental and physical disabilities live. "I do think at some point
... we're going to be out of money to pay the bills; that issue
will have to be addressed at that time. This is just one issue
in a very challenging budget this year."
It is unclear how quickly the federal government will make its
decision. Don Putnam, president of the parents and relative
organization at Oakwood, said he hopes the federal government
will approve Medicaid funding for the facility before the
state's money runs out.
"I have confidence that the cabinet and the legislature and the
Health and Welfare Committee will work something out," Putnam
said. "Oakwood needs to be there."
Miller said Thursday she thinks the state and Bluegrass Mental
Health have worked hard to make sure that it will be ready for
the survey. Putnam agreed, adding that many parents have seen
positive changes at Oakwood since Bluegrass took over in
November 2006.
"We've had no Type As (the most serious violation) during 2008,"
Miller said. "I feel really good about where we are."
Oakwood lost its Medicaid certification in September 2005, after
an unsupervised resident drowned in a bathtub. It was not a good
era for the facility: In 2005 and 2006, Oakwood received 24 Type
A citations, the most serious kind, for failing to keep
residents safe.
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Tamie Hopp
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