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VOR Weekly E-Mail Update
May 9, 2008
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Table of Contents
STATE NEWS
1. MASSACHUSETTS: VOR and COFAR in fight for Fernald
2. TENNESSEE: State Retaliates Against Advocacy Group by
Eliminating Contract
3. MISSOURI: Community standards bill continues to move through
the legislature
4. More from MISSOURI: Parents of autistic man seek help from
state
5. KENTUCKY: CMS Agrees to Continue Funding for Oakwood ICF/MR
Through May 15
6. FLORIDA: Law could cut $120 million for services to disabled
Coming Up: May 16: Focus on the Arizona Training Center at
Coolidge – “The only home some developmentally disabled people
have known” AND
May 23: Focus on Aging Crisis (Texas, National): “When
Crisis Hits the Disabled - Limited Options for Support and
Housing Exist for Aging Caregivers and Their Children”
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1. MASSACHUSETTS: VOR and COFAR in fight for Fernald
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Summary: In support of keeping Fernald an option for current
residents, VOR and the Massachusetts Coalition of Families and
Advocates for the Retarded (COFAR, VOR’s Massachusetts
affiliate) on April 29 submitted a 'friend of the court" brief,
which can be filed by those who are not party to the actual
court case. Their brief claims that Judge Tauro's ruling in
Ricci, which requires Fernald remain an option for current
residents, was in line with the Olmstead Supreme Court decision.
The groups claim while the "Olmstead" decision dealt with two
women whose conditions improved enough to be placed in community
homes, it also made clear that there are individuals for whom
community placement is not appropriate. "The remaining residents
of Fernald, are, for the most part, exactly such individuals,"
the brief said. "They are profoundly retarded individuals who
not only will not benefit from community placement, but who will
suffer there."
Advocacy groups in fight for Fernald
By Richard Conn
Daily News Tribune
May 05, 2008
WALTHAM - National and statewide advocacy groups for the
developmentally disabled filed a joint brief earlier this week
in the U.S. Court of Appeals supporting a federal judge's
decision to keep Fernald Developmental Center open as an option
for its residents.
In August 2007, U.S. District Court Judge Joseph Tauro ruled
Fernald must remain an option for its current residents. The
state, which has long planned to close Fernald, appealed that
decision in March.
The state and the Fernald League, a group of guardians fighting
to keep Fernald open, have been locked in a legal battle since
2003, when the state announced its intention to close the state
institution.
The Voice of the Retarded and the Massachusetts Coalition of
Families and Advocates for the Retarded on April 29 submitted a
'friend of the court" brief, which can be filed by those who are
not party to the actual court case.
"It's definitely in support of keeping the facility open," said
Marilyn Meagher, president of the Fernald League of the brief
filed by the two organizations.
Both sides in the Fernald case have cited a 1999 U.S. Supreme
Court decision Olmstead vs. Zimring, which said that the state
of Georgia did not have the right to keep two women with
developmental disabilities in a state mental hospital when it
had been recommended that they be transferred to a
community care facility.
The brief filed last week by the Voice of the Retarded and the
Coalition of Families and Advocates for the Retarded, claims
that Tauro's ruling was in line with the earlier Supreme Court
decision. The groups claim while the "Olmstead" decision dealt
with two women whose conditions improved enough to be placed in
community homes, it also made clear that there are individuals
for whom community placement is not appropriate.
"The remaining residents of Fernald, are, for the most part,
exactly such individuals," the brief said. "They are profoundly
retarded individuals who not only will not benefit from
community placement, but who will suffer there."
State officials say the 196-acre Fernald campus is too costly to
keep open and that closing Fernald would be in line with a
switch nationally from institutional care to community living
for the developmentally disabled.
Members of the Fernald League have argued that the facility's
residents - many of whom have lived there for about 50 years -
should be given the option of staying.
Tauro said his decision was not meant to stop the state's plans
to close Fernald. Instead, his ruling intended to give residents
the choice to stay there as long as the facility stays open.
However, the state, in its appeal of Tauro's decision filed in
March, said the order "effectively constituted an unlawful
command" that Fernald be kept open. The Fernald League was given
30 days to file a response to the state's appeal, but asked the
court for an extension until June - which has been granted,
George Mavridis, plaintiff representative for the Fernald League
said Friday.
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2. TENNESSEE: State Retaliates Against Advocacy Group by
Eliminating Contract
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Press Release:
Leanne Boyce
People First of TN, Inc.
April 11, 2008
After taking a stand against funding cuts in programs supporting
Tennessee’s most vulnerable citizens, People First of Tennessee
received a letter from the TN Division of Mental Retardation
that its self-advocacy contract will not be renewed.
The funding cuts have been a major source of contention during
this spring’s budget hearings with provider agencies being
forced to absorb a 6.1% reduction in payments as well as other
overall efforts to reduce community services. At a loss to stem
the harmful effects of these unilateral actions, People First
took action by filing a motion for contempt in their lawsuit
against the Arlington Developmental Center, alleging that the
current course of action taken by the DMRS puts Arlington
lawsuit class members’ health and safety in jeopardy. In
response, this week the organization received notice that its
contract to provide training in advocacy to DMRS recipients
would not be renewed.
“We feel that this is retaliation for our actions regarding the
budget cuts,” says Leanne Boyce, Executive Director. “DMRS tried
to cancel our contract when we first filed our case against the
Arlington Developmental Center in 1991. We feel there is a
definite pattern of unlawful retaliation on DMR’s part.”
People First has had its self-advocacy contract with the state
since 1987. Funding from this grant has been used to assist
individuals with developmental disabilities learn how to speak
up and become contributing citizens in their local communities.
“Having this contract eliminated now,” explained Ms. Boyce,
“when the need to educate service recipients about their rights
with regard to the funding cuts, only increases the likelihood
that service reductions will proceed without due recourse being
taken by those affected.”
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3. MISSOURI: Community standards bill continues to move through
the legislature
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Missouri VOR Newsletter
April 29, 2008
Senator Nolder’s and Senator Green’s SB 1081 which
strengthens quality assurance and safety in community
residential settings passed the Senate this week and is in the
House. It looks like it finally has a good chance of passing.
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4. More from MISSOURI: Parents of autistic man seek help from
state
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Summary: This article sums up exactly the bureaucracy,
confusion, waiting and sometimes lies that thousands and
thousands of families across the country whose children are on
waiting lists for services.
By Bill McClellan
ST. LOUIS POST-DISPATCH
Bill McClellan
05/04/2008
Brent Schnurman is 23 years old, autistic and essentially
nonverbal. He sometimes speaks, but most often just repeats the
last word he has heard. You can imagine the confusion. "Do you
want to go for a walk, Brent, or take a ride?" "Ride." "Do you
want to go for a ride, Brent, or take a walk?" "Walk."
Perhaps this should have prepared his parents, Richard and Donna
Schnurman, for their journey into the rabbit hole of the
Missouri mental health system where nothing is quite as it
seems. About a month ago, I wrote about the first part of their
journey. It began when Brent left the Special School District of
St. Louis County and got into a program for adults with
disabilities. The program was not a good fit. It didn't provide
adequate supervision. In mental health parlance, Brent is an
eloper. A runner. An out-the-door-and-just-take-off sort of
runner. In December, Brent was dropped from the program. Donna
has been his full-time caregiver ever since.
It is hard to imagine how exhausting that job is. Brent is a
strapping young man. He paces with nervous energy. Donna is with
him every moment. Touching him, holding his arm. She loves him
fiercely, but she is tired. Bruised, too. He likes to squeeze,
and he sometimes squeezes his mother's arm. There is no intent
to hurt, but still, the squeezing takes its toll.
The Schnurmans finally found a program that seemed like a
perfect fit. It's the Community Integration Program run by St.
Louis Arc. But unlike the program that dropped Brent in
December, the Arc program does not take Medicaid, and at about
$26,000 a year, it is well beyond the Schnurmans' means.
Fortunately, federal and state governments are prepared for just
this sort of problem and handle it through something called a
Medicaid Waiver. In Missouri, the Department of Mental Health
buys the services from Arc through the Medicaid Waiver program.
But because tthe state picks up 40 percent of the cost, it
limits the number of waivers.
Are any available, and could Brent get one?
He had a powerful ally. Richard Schnurman read a newspaper story
about state Rep. Dwight Scharnhorst, the majority deputy whip.
He had an autistic grandson who died of an epileptic seizure at
the age of 6. Although the Schnurmans do not live in his
district, Richard wrote him a letter. He came to the Schnurman
house. I was there that day, too.
"I'm going to try to help them get some kind of funding," he
said.
That was a little more than a month ago. Shortly after the story
appeared in the paper, I received an e-mail from John Hutchings.
"I read your article with great interest. I have a handicapped,
autistic 27-year-old son," he wrote. "In 2002, when I applied
for a Medicaid Waiver slot for my son, I was informed that no
waiver slots or money were available. Both were lies. Please
take a look at the two attached appellate court decisions
regarding my son. ..."
Hutchings successfully sued the Division of Social Services and
the Department of Mental Health. His son was awarded a waiver,
and the state had to reimburse him for his legal fees. I called
Hutchings. He said his son was still receiving services through
the waiver. But Hutchings was not pleased with the state. "I've
been lied to so many times I don't trust anybody in state
government. The Department of Mental Health should be my son's
advocate, not his adversary," he said. With Hutching's
permission, I forwarded his e-mail to the Schnurmans.
Meanwhile, Scharnhorst seemed to be plugging away. He suggested
the Schnurmans also contact their state senator, Mike Gibbons.
Richard called the senator's office. The person he spoke with
was pleasant, but noncommittal.
Richard continued calling people, trying to learn if any waivers
were available. It seemed impossible to find out. The Department
of Social Services has the contract with Medicaid, but the
Department of Mental Health administers the waiver program.
Richard's calls bounced from office to office.
Finally, somebody from the Missouri Health Net in the Department
of Social Services called and left some numbers on the answering
machine. The state had approved 7,775 comprehensive waivers for
this fiscal year and had assigned 7,534 of them. But 75 were
reserved for people leaving institutional care and 190 were
reserved for people in crisis.
The numbers didn't quite add up. Richard was perplexed, but
thrilled. Mostly thrilled. There were 190 reserved for people in
crisis? Wouldn't Brent's case qualify for crisis?
I called the Department of Mental Health. Bob Bax, the director
of public affairs, arranged for a teleconference with Kay Green,
director of federal programs for the Division of Mental
Retardation and Developmental Disabilities, and Jeff Grosvenor,
the deputy director for administration of that same division. I
asked about the numbers from Missouri Health Net.
"Missouri Health Net got those numbers from me," said Green,
"but that was as of April 22nd."
"I think the situation we're talking about is the individual is
eligible, but there aren't funds available," Grosvenor said.
"Jeff is correct," Green said. "Those are targets and we're on
target based on available funding. ..."
The conversation went on like that for several minutes. I was
talking to the right people, and they apparently were trying to
explain things to me, but I understood nothing. Later, I spoke
with Bax and we exchanged e-mails. What about the waivers for
people in crisis? These people are in crisis.
"Brent and his family are one of 140 families across the state
with the same level of crisis and we do not have the resources
to serve them," Bax stated in an e-mail. "When persons leave
waiver services we take any funds available and apply to persons
in crisis. Unfortunately there is no funding currently and we
can't predict when persons might leave waiver services. Our
hearts go out to Brent and his family as well as the other
families in this situation. We will continue to look for ways to
support Brent and other individuals and families."
I visited the Schnurmans one evening last week. Richard was
walking with Brent as I approached the house. Brent is a
nice-looking young man, but locked in his own world. Richard and
Donna are solicitous of him, loving, watchful. But tired, too,
and desperate for help. It does not speak well of Missouri that
we have no help to give.
Other than Hutchings, that is. At least he has advice.
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5. KENTUCKY: CMS Agrees to Continue Funding for Oakwood ICF/MR
Through May 15
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Summary: Following an administrative law judge’s appeal
ruling on April 15, 2008, federal funding was lost as a result
of the investigation of two incidents, one of which involved a
death, in August and September 2005. The investigation and
report identified “an immediate and serious threat to the
clients’ health and safety.” CMS allowed funding to continue
during the duration of the Cabinet’s appeal. In September 2006,
CHFS contracted with the Bluegrass Regional Mental Health-Mental
Retardation Board to assume full management responsibility for
the facility. Bluegrass has made significant progress in
improving the safety of the residents.
Source: Kentucky Cabinet for Health and Family Services (CHFS)
press release
May 1, 2008
The Cabinet for Health and Family Services (CHFS) is
aggressively pursuing recertification and federal funding from
the Centers for Medicare and Medicaid Services (CMS) for the
Bluegrass Communities at Oakwood in Somerset.
Following an administrative law judge’s appeal ruling on April
15, 2008, federal funding was lost as a result of the
investigation of two incidents, one of which involved a death,
in August and September 2005. The investigation and report
identified “an immediate and serious threat to the clients’
health and safety.” CMS allowed funding to continue during the
duration of the Cabinet’s appeal.
According to a letter from CMS, funding will continue for 30
days from April 15, provided CMS is assured that CHFS is
protecting the well-being, safety and health of Oakwood
residents, and that appropriate transitional efforts are under
way.
“The Cabinet has directed the Bluegrass Regional Mental
Health-Mental Retardation Board, the facility’s manager, to
focus all of its efforts toward that goal,” said CHFS Secretary
Janie Miller. “A Cabinet team is on-site at Oakwood, assisting
Bluegrass. We are working diligently to assure that the
residents continue to receive appropriate care in a safe
environment, and to assess Oakwood’s readiness for reinstatement
in the Medicaid program.”
CHFS also plans to identify an independent team to assist in
finalizing preparations for the surveys required by CMS for
reinstatement.
“Recognizing that we may experience a gap in federal funding,
the Cabinet will explore, in cooperation with families of the
Oakwood residents and providers, opportunities for transition to
community placements or alternative settings,” Miller said.
Toward that end, CHFS plans to meet with parents, guardians and
other constituent groups to discuss the loss of federal funding
and to explore transition opportunities. The Cabinet also plans
to work with the Division of Protection and Advocacy to ensure
additional assistance from advocacy organizations and with
community providers with proven histories of successful support
of individuals similar to Oakwood residents.
CHFS continues to consult with CMS and the Department of Justice
throughout this process.
Following the investigations in the fall of 2005 that resulted
in termination, the facility underwent several management
changes, and the facility continued to receive Type A citations,
the most serious violation issued by the Office of Inspector
General.
In September 2006, CHFS contracted with the Bluegrass Regional
Mental Health-Mental Retardation Board to assume full management
responsibility for the facility. In the contract, Bluegrass
agreed to operate Oakwood in compliance with all requirements,
and has made significant progress in improving the safety of the
residents.
Oakwood's current annual budget is approximately $78 million, of
which roughly $60 million comes from the Medicaid program.
Oakwood currently serves 224 people with mental retardation, 24
of whom are in the process of already being transitioned to
community placements.
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6. Florida: Law could cut $120 million for services to disabled
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Pensacola News Journal
By Jamie Page
April 28, 2008
The Florida Legislature is proposing a change in the law
that would cut more than $120 million from the budget for
services for people with developmental disabilities.
A coalition of at least six local nonprofits that assist
disabled residents, along with advocates and families, are
calling for the legislature to reconsider the cuts, which would
leave some disabled residents homeless, said Donna Fassett,
executive director of ARC Gateway.
The news was announced today at the Pollak Training Center at
ARC Gateway in Pensacola.
“There are so many things they (legislature) don’t understand,”
said Dave Miller, CEO of Horizons of Okaloosa County. “We are
afraid many people are going to have their services cut and
we’re not sure what’s going to happen to those people.”
The legislature is looking at moving to a tier funding system
for those with disabilities. Depending on which tier they fall
in, based on their needs, the cuts will be significant in three
of the four categories.
Ruth Brassow of Pensacola has a 29-year-old son, Paul, who has a
developmental disability. He lives in a group home with five
other men who are like family to him, she said. Paul also
attends an adult day training program, where he learns jobs
skills and earns some money of his own.
Under the cuts, Paul would be $7,000 short of covering the costs
of his basic services, not including medical supplies or dental
care. However, during the past year, Paul has had to have
extensive dental work.
“In the future, he will have to choose between his home, his job
and dental care,” Ruth Brassow said. “The choices we face leave
us with no easy answers, and in some cases with no answers or
solutions at all.”
Recently, a House and Senate committee agreed on an additional
5.5 percent reduction to funding to these organizations, on top
of the $120 million cut, said Sherry White, CEO of UCP of
Northwest Florida.
“The combination of the tiers and the rate reduction will have
ramifications that we’ve only begun to determine,” White said.
“We do understand that this is a very difficult financial year
and that we are not the only group facing challenges, but we
have endured many years of rate reductions.”
White said the proposed cuts would leave no choice but to
discontinue certain services.
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Tamie Hopp
