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Plan to Join Us!! VOR 2007 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
April 27, 2007
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Contents
1. VOR Annual Meeting (Agenda Update/Changes) and Washington Initiative -
It's not too late! Register today!
2. Houston Center Update - Your response to the "Save the Center" Action
Alert made a difference!
3. KENTUCKY: State gets good progress report at home for mentally retarded
4. WASHINGTON: Youths' placement in state institution resparks controversy
5. FLORIDA: Disabled kids caught in high-stakes game
6. CALIFORNIA: Caregivers Urged To Leave Phones Home
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1. VOR Annual Meeting (Agenda Update/Changes) and Washington Initiative -
It's not too late! Register today!
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It is not too late to register for VOR's Annual Meeting and Washington,
D.C., but time is of the essence. The hotel block, guaranteeing space and
availability at the VOR special price will be released on May 13, so the
time to make arrangements to join VOR in Washington, D.C. is now. Visit
http://www.vor.net/VORAnnualMeeting2007.htm for complete meeting details,
including hotel reservation instructions.
EXCITING AGENDA CHANGES TO REPORT:
The Agenda for the Annual Meeting has changed. Here is the finalized line
up of presentations:
Policymaking from State to Federal: A focus on the issues and the role of
advocates
a. Mary McTernan, VOR President - President's Message
b. Eileen Elias, Deputy Director, U.S. Department of Health and Human
Services, Office of Disability: Understanding the Surgeon General's Call to
Action to Improve the Health and Wellness of Persons with Disabilities --
How to Ensure Health Care Access.
c. Matt Salo, Director, Health and Human Services Committee, National
Governors Association -- Trends and developments relating to state health
care policy impacting people with mental retardation and developmental
disabilities, including Medicaid.
d. Greg Giordano, Chief Legislative Assistant to Florida State Senator Mike
Fasano (R-11), Majority Whip -- The legislative process and Florida S.B.
402: A case study in effective grassroots advocacy.
Please Join Us. Visit http://www.vor.net/VORAnnualMeeting2007.htm today to
register!
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2. Houston Center for Persons with Mental Retardation Update - Your
response to the "Save the Center" Action Alert made a difference!
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Last week, VOR alerted its email update readers to a situation in Houston
that threatened the very existence of the Houston Center Serving Persons
with Mental Retardation. We called on you to help, encouraging you to sign
an online position in support of the center, its residents and families.
Recently, the a preliminary agreement has been reached. Under the agreement
the Foundation for the Retarded will purchase the land and leases from the
City of Houston for a price of $6 million. The City will also help provide
financing for the purchase. The transaction will be structured to resolve
any and all disputes between the Center and the City regarding the legal
status of its leases, and will allow the Center to continue operating from
its present location indefinitely.
For more details, please visit http://www.savethecenter.org.
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3. KENTUCKY: State gets good progress report at home for mentally retarded
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Lexington Herald-Leader / Associated Press
April 24, 2007
SOMERSET, Ky. (AP) -- The state's largest facility for the mentally
retarded has made substantial progress in the past six months, a U.S.
Department of Justice team told state officials.
The Communities at Oakwood in Somerset has received 24 Type A citations
since January 2005 for failing to protect residents from harm and abuse.
Two of the citations involved deaths.
But the Justice Department team found change since the state installed new
management at the facility last November.
"They had very complimentary things to say," said Mark Birdwhistell,
secretary of the Cabinet for Health and Family Services, which oversees the
facility. "They said this was a very different place than it was in
October. . . One of the comments was, 'You have done more in six months
than many have done in the past three years.'"
The Centers for Medicare and Medicaid announced earlier that it would
terminate funding to the facility in August, probably resulting in its
closing.
The state is currently appealing that decision. Birdwhistell said Monday
that he hopes a favorable report from the Justice Department will be a
positive step in the state's fight to keep more than $40 million in
Medicaid funding. The facility has 232 mentally handicapped residents.
"I think it's definitely a favorable indicator ... that things are moving
in the right direction," Birdwhistell said.
A Justice Department survey team returned to Oakwood last week for the
six-month review. In two reports in 2006, the department was extremely
critical of Oakwood and its leadership.
The team's written report will not be available for six months, but the
team's exit report was given to state leaders on Friday.
Birdwhistell said officials were encouraged by the Justice Department
report but cautioned that there was still much work to be done at Oakwood.
Bluegrass Regional Mental Health-Mental Retardation Board was chosen last
fall to run the facility. The $56.75 million contract to manage 1,000
Oakwood employees will expire at the end of June.
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4. WASHINGTON: Youths' placement in state institution resparks controversy
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Summary: In response to the debate regarding the placement of minors in
Fircrest School, a state facility for people with mental retardation,
Friends of Fircrest and Action for RHCs issued this statement:
"Fircrest School is the safety net for those in crisis. Families with
children, who are unable to find services for their loved ones, are turning
to Fircrest for temporary respite. We are happy they have these
professional resources available to them. Many of us know first hand what
living in crisis is really like. The admission of children (18 years &
younger) is a Short Term Admission. During this time the youngsters are
stabilized, medications are reviewed and families are given the opportunity
to re-group as a family. Once this is accomplished, searches are carried
out for alternative residential placements or the children return to their
homes. There should be no guilt or criticism directed to the families who
have chosen this path to secure services for their loved ones and do what
is in the best interest of their families."
The President of Friends of Fircrest, Jim Hardiman, also issued an Open
Letter that can be read at:
http://www.fircrestfriends.org/JHardmanLetter.htm.
WASHINGTON: Youths' placement in state institution resparks controversy
By Maureen O'Hagan
The Olympian
April 23, 2007
Seattle - Reversing a decade-long trend, the state Department of Social and
Health Services has quietly moved 18 disabled youths into the Fircrest
School, the youngest a 7-year-old boy.
The placements, which began trickling in about a year ago, led to a dispute
between the Shoreline School District and DSHS - and as a result, some
youths haven't attended school in several months.
The federal Office of Civil Rights is investigating a complaint about the
lack of school funding from The Arc of Washington State, an organization
that is an advocate for people with developmental disabilities. Meanwhile,
workers at Fircrest, an institution in Shoreline for developmentally
disabled adults, have been scrambling to build programs and a classroom for
their young charges, even as they continue to hope the situation is
temporary.
'Don't belong'
"Children don't belong in institutions," said Asha Singh, Fircrest's
superintendent.
Advocates for the disabled see the placements as an alarming trend. "It's a
huge step backward for our state," said Sue Elliott, executive director of
Arc.
Since the 1970s, there has been a major philosophical shift away from
institutionalization. Over the years, some states eliminated institutions
for the disabled altogether. Washington, which has five such facilities,
has focused on downsizing. The population at Fircrest, for example, is now
200, compared with a high of about 1,100 in the 1960s.
Rules, demand collide
The admission of children and teens stems from a collision, of sorts,
between Medicaid rules and a high demand for community resources. Medicaid
mandates that institutional care must be available for those who want it
and are eligible.
Government programs also pay for care in the community - including things
such as group homes and in- home caregivers - but a lack of funding means
thousands of disabled people are on waiting lists. Combine the two and you
get the vexing situation at Fircrest: If other care were available, these
youths likely wouldn't be living there. Fircrest costs about $200,000
annually per person.
According to Linda Rolfe, director of the state's Division of Developmental
Disabilities, four of the Fircrest youths are there at their parents' or
guardians' request. The remainder, she said, are waiting for places to live
or services in the community. Nearly all of them lived with their families
and all of them attended public schools before coming to Fircrest.
All of the youths have serious developmental disabilities, and most have
extreme behavioral issues. For example, some have a history of striking out
at caregivers, breaking things or running away; most need constant
one-on-one supervision. Many are nonverbal.
Most experts, including Rolfe, agree it's best for disabled children to
live with their families. Some say that institutions deny them the
opportunity to learn typical daily activities - such as making lunch or
doing laundry - and thus slow their development.
Aside from the recent placements, only one youth, a teenage boy, has been
placed permanently at Fircrest in the past decade. Fircrest has also housed
some children for short-term stints, often to give their families a break
or for specialized medical care.
The institution was able to accommodate children in small numbers. But
since last year, Fircrest has had to scramble to hire and train dozens of
aides for round-the-clock care, Singh said. She still hasn't been able to
hire a child psychologist. There's no playground yet, except for an old
swing set. The children live together in small groups, though some have
limited interaction with peers.
Singh emphasized that the children are getting good care, but she hopes
they can soon move back into the community.
Drawing the line
Shoreline School District officials, meanwhile, said they simply can't
handle so many special-needs students. The district has been struggling to
recover from a budget deficit.
Last spring, school officials learned that a few children had been placed
at Fircrest, which would make their education Shoreline's responsibility.
"We were told it was temporary," said Shoreline Superintendent Sue Walker.
"Come fall, they would not be there."
Shoreline enrolled the children in special-education classes, as DSHS kept
assuring the district it was temporary. "Although some students did leave,
others came right behind them," she said. Then the district learned some of
the students were considered permanent placements.
"That was a very different scenario for us," Walker said.
Special-education students require extra attention from staff members, and
each needs an individualized program. To illustrate the complexity of the
situation, a Shoreline administrator said one child's needs are so
specialized that he has his own classroom.
Two months ago, the district drew the line: It would keep the six students
who were enrolled since the fall. Shoreline dug up a section of Washington
law that said DSHS must provide, among other things, the classrooms for
residents of state institutions. In a Feb. 15 letter, Shoreline demanded
DSHS follow the law.
On April 5, the state agreed to provide classroom space at Fircrest. And on
a visit last week, teacher Ladd Beversluis was busy trying to set up
something that could accommodate students of elementary- to high- school
age.
Shoreline and Fircrest have high hopes for Beversluis, a retired
special-education teacher with 29 years' experience. But before he can
start teaching, the classrooms need carpeting, acoustical dividers,
Internet
connections and other improvements. It was unclear when those would arrive.
Meanwhile, the youths, such as Hans Guetlich, are waiting.
Hans, 12, had lived with his family and loved attending school with his
peers in the Lake Washington School District. But in mid-March, his family,
which includes a 9-year-old sister, needed a break after years of mounting
pressures. Hans is nonverbal and sometimes gets so frustrated he breaks
things. He needs constant supervision, so his mother, Ann Creighton,
couldn't even take a normal trip to the grocery store. Her husband travels
for work, so she's often on her own.
"Every day was such a struggle," Creighton said.
She has no problem with the care at Fircrest, although she doesn't want
Hans there long-term. But it's certainly expensive compared to what
Creighton had been requesting for years - long-term behavioral therapy at
home.
And for more than a month, she said, "Hans has been denied a free public
education."
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5. FLORIDA: Disabled kids caught in high-stakes game
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Summary: Calling for more money from their leaders, legislators are trying
to plug a deficit in the program for the developmentally disabled. But it
comes at the expense of other needy people.
By Marc Caputo, Yudy Pineiro, and Breanne Gilpatrick
The Miami Herald
April 22, 2007
TALLAHASSEE -- To keep thousands of disabled people from losing services,
Republican lawmakers in the Florida House have proposed a way to spend
their way out of the problem: Take the money away from other needy people.
The surprise proposal, made Saturday during budget negotiations, would help
fill a deficit in a developmental disabilities program helping 25,000
people, but it comes at a cost of $30 million in lawmaker pet projects.
They help, among other things, sick, wounded and disfigured kids at places
like Miami Children's Hospital and Hollywood-based Joe DiMaggio Children's
Hospital.
And it doesn't have to be this way.
There's about $1 billion in unspent money that House Speaker Marco Rubio of
West Miami and Senate President Ken Pruitt of Port St. Lucie have not
allocated in the $70-plus billion budget for next year. They have
repeatedly said they don't want to spend too much in a tight budget year
when many will have to do with less.
But Republicans and Democrats in both chambers say it's time to pump more
money into the tight-fisted section of the budget for health and human
services -- making the House lawmakers' ante-raising maneuver a message
both to legislative leaders and the entire Senate.
''In poker terms, we're all in,'' said Rep. Juan Zapata, a Miami Republican
who sits on the joint health and human services budget negotiation
committee. ``This is a big political problem.''
The Senate's leader in budget negotiations, Crestview Republican Durrell
Peaden, will either accept the proposal or counteroffer as soon as today.
Peaden said he first wants to review ''half-baked'' spending items in the
budget. If the committee leaders can't agree on the terms, Rubio and Pruitt
will ultimately decide them before the lawmaking session ends May 4.
The big sticking point: the House wants to plug half of the state's share
of the deficit with a type of money called ''nonrecurring revenue'' --
budget-speak for one-time money that lawmakers prefer to spend on one- time
projects. They include road-building or grants, not programs to be funded
yearly.
The Senate's budget seeks to avoid spending any nonrecurring money on
recurring programs in order to avoid even bigger cash crises in the future.
But House Minority Leader Dan Gelber, of Miami Beach, said the reasoning is
logical, but also ''immoral'' as it relates to the Home and Community Based
Care program. It was designed to keep those who suffer from cerebral palsy,
mental retardation or epilepsy out of institutions.
Gelber said lawmakers should plug the hole with one-time money and fix the
Agency for Persons with Disabilities -- something they've tried to do in
dribs and drabs in the past.
''This program has been mismanaged,'' Gelber said. ``Punishing disabled
people isn't the solution.''
Such talk means one outcome is certain: many in the Medicaid-related
program can expect to receive fewer services so as to prevent a future
deficit, such as the $158 million forecast for next year.
Opinions differ as to the cause of the program's deficit. But blame could
be spread around: From APD's money-spending structure and ''mismanagement''
in forecasting costs, to the fact that the legislatively approved home-care
program allows for families to receive numerous and expensive services, to
the costs and services billed by providers.
Since 1999, the program's enrollment has grown 83 percent and now serves
more than 25,000 people. But costs have increased 296 percent to $777
million. In addition, the program has a waiting list of 13,489 people who
receive no services.
The House wants 314 people pulled off the waiting list and served. The
Senate: 0.
The House wants to now fully fund the deficit by plugging in $68 million of
the state's share of the program in which the federal government pays 57
percent of the costs. The Senate doesn't want to fund the projected
deficit.
To prevent a future deficit, Senators are steeply limiting services. And
House lawmakers are proposing a broad variety of cuts and trims to services
for thousands in the program. Also, they're proposing to shift some people
to other, less expensive programs that also serve the developmentally
disabled.
''There are projects in jeopardy because of this move,'' said Rep. Bill
Galvano, a Bradenton Republican who came up with the plan. ``But what
choice to do we have? I'm certainly open to more money.''
Sen. Nan Rich, a Weston Democrat, said she wasn't comfortable with helping
one group while harming another. ''You're dealing with vulnerable people no
matter how you look at it, and I don't want to pit one against the other,''
she said.
Of the $30 million in cuts, Miami Children's Hospital stands to lose
$600,000, and the Joe DiMaggio center would lose $1 million. And for many
who serve the disabled, the House offer still doesn't go far enough, said
John Hall, executive director of ARC of Florida, an advocacy group for the
developmentally disabled that organized a large Capitol rally on Thursday.
''There are still cuts on the table,'' Hall said.
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6. CALIFORNIA: Caregivers Urged To Leave Phones Home
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Summary: Cellphone videos showed workers at an Anaheim facility striking
disabled clients. But its supervising agency wants to ban the devices.
By Garrett Therolf
Los Angeles Times
April 19, 2007
The video made national news: a worker caught on a cellphone video
repeatedly striking a developmentally disabled man as he cowered in fear
and moaned.
In the weeks following the discovery, the administrators overseeing Orange
County's programs for the developmentally disabled have declined to
discipline the adult day-care program in Anaheim where the abuse occurred,
saying they were isolated incidents.
But officials did encourage workers not to bring cellphones to work and to
use the video function only in emergencies away from the facility.
The cellphone memo was distributed Feb. 13 - less than two weeks after news
reports of the abuse video - and was intended for the hundreds of
caregivers providing group homes, daytime activities, transportation and
other services to 15,000 of the county's developmentally disabled.
Officials of Orange County Regional Center, the nonprofit organization the
state established to administer tax-funded contracts for services for the
developmentally disabled in the county, said the cellphone policy had been
in the works long before the video scandal.
Instances of abuse of the developmentally disabled are notoriously
difficult to uncover because many clients have difficulty expressing
themselves and do not always come into frequent contact with the outside
world.
The meeting where the memo was distributed was sponsored by the Regional
Center. According to the agency's minutes of a Feb. 13 meeting, Bill
Bowman, executive director of the Regional Center, talked to service
providers about the cellphone advisory in the context of his agency's
response to the video scandal. He also offered the services of a public
relations firm to coach caregivers how to talk to the news media.
Bowman's assistant said that Bowman was too ill to speak.
One video, shot March 22, 2006, shows a disabled man being slapped twice
while attending a day program at the Jossen Vocational Academy in Anaheim.
A man off-camera is heard laughing. When the disabled man groans and pulls
away, someone off-camera begins to clap.
The other video, shot April 12, 2006, shows a man leaning against a toilet.
In the 30-second video, someone slaps the man three times as he lets out
high-pitched wails and puts both hands up to his face to ward off the
blows.
The abuse was discovered when the employee who allegedly taped the abuse
sold the phone to another Jossen employee. When the buyer viewed it, he
reported it to Jossen officials, who contacted police.
Two former employees of the day program, Patrick John Solis, 22, and
Michael Douglas Rama, 24, have been charged in the attacks and are awaiting
trial.
In response to questions from The Times about the cellphone memo, officials
from the Regional Center tried to distance the agency from the memo, saying
it was written by a group of caregivers and that it was
distributed at an agency meeting that covered many topics.
"We certainly want to discover any instances of abuse," said Janis White,
the chief operating officer.
White and Doug Miller, who supervises service provider contracts, said the
memo was written in response to a longtime problem of employees using
cellphones, iPods and other electronic devices while they were supposed to
be supervising clients.
Additionally, one service provider recently videotaped a client to show the
behavior to another employee. The family of the client objected, White
said.
Joyce Hearn, chief executive of Orange County ARC, an agency that provides
work and other services for the developmentally disabled, said she and
other caregivers had worked on the suggested policy for cellphones and
other electronics for years.
It wasn't completed until the discovery of the abuse at Jossen, however,
and it addressed only cellphones.
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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 organi
zation. 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 ________________________.
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include complete address including zip code)
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Amount to charge to card:
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