REMINDER: AUGUST is a great time to meet with your U.S.
Representative in his/her District office near your home to seek
support for H.R. 3995. Call to make an appointment today.
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VOR Weekly E-Mail Update
July 18, 2008
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STATE NEWS
TABLE OF CONTENTS
1. Deaths of developmentally disabled in home-care settings
should get closer reviews: GAO
2. Maryland: Families Fight to Keep Rosewood Center Open
3. California: Stalemate impacts homes for disabled
4. Massachusetts: Making the wrong move
5. Washington, D.C.: Disabled Services Shrink In D.C.; 3
Residential Care Firms Quit, Citing Low Rates
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1. National: Deaths of developmentally disabled in home-care
settings should get closer reviews: GAO
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July 09, 2008
States should more thoroughly investigate deaths of people with
developmental disabilities who were receiving home- and
community-based services for care, according to a new government
report. The Centers for Medicare & Medicaid Services should
pressure states to review such deaths more closely, the
Government Accountability Office says.
"Concerns about deaths resulting from poor quality of care and
inadequate oversight of individuals with developmental
disabilities receiving community-based care," compelled Sen.
Charles Grassley (R-IA) to request the report (GAO-08-529).
The GAO interviewed officials in 14 states and found they varied
widely in how they reviewed the deaths of individuals with
developmental disabilities who received care under Medicaid
waivers. Some reviewed only unexpected deaths, for example. Four
of the states added extra steps to their reviews, which produced
"greater accountability and transparency," GAO report authors
wrote. They call for more in-depth reporting, which Health and
Human Services officials countered would not be in line with
other groups' reporting requirements.
The report can be found at www.gao.gov/new.items/d08529.pdf.
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2. Families Fight to Keep Rosewood Center Open
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By Christian Schaffer
ABC News 2 - Baltimore
E.W. Scripps Co.
July 14, 2008
Dozens of families say closing the Rosewood Center in Owings
Mills puts their loved ones at risk. They want to keep Rosewood
open -- and now they're getting some help.
There have been reports about trouble at Rosewood for years.
State regulators have documented cases of poor treatment of
residents, and crumbling facilities. Earlier this year Governor
O'Malley announced that the state would close Rosewood.
But many families say Rosewood is the only home their loved ones
have ever known. On Sunday, some of them came to Rosewood to
protest the closure. ‘The governor has made a bad decision; he
thinks it's good but he's had bad advice,’ said Harry Yost,
whose son Larry is a Rosewood resident.
In January, Governor O'Malley announced that Rosewood would
close within 16 months. All of its residents would be moved to
group homes with treatment options specifically designed for
them. At the time, he said, ‘On balance I have to believe that
living in community and the positives that flow from that far
outweigh the disruption in the here and now.’
Harry Yost’s son Larry is blind, deaf and can't speak -- because
of a meningitis infection as an infant. He's lived at Rosewood
for 45 years. In all that time, Harry Yost says he's seen no
abusive treatment. He says community-based centers can't
guarantee the same level of care his son has received. ‘The
advantage that we have here versus going out into a group home
is that these people that are here, even the sub-contractor
people, are trained,’ he said.
Now, Yost and other Rosewood families are getting help from
families with loved ones in the state's two other residential
treatment centers -- Potomac Center in Hagerstown, and Holly
Center in Salisbury. They have similar concerns about the level
of care at group homes. ‘They just have no business in a care
situation that cannot be controlled nor is very consistent,’
said Doug Wantling, whose sister lives at Potomac Center.
They worry if the state can close Rosewood, it can close their
facilities too. ‘We will fight. We are joining in this fight
because we are all in this together all the families across the
state,’ said Marshall Rickert, whose brother lives at Holly
Center.
Harry Yost says there are about 70 families at Rosewood who
don't want the facility to close. Their plan is simple -- in
order to move their loved one, the state needs a family member
to sign a consent form. Yost and the others say they won't sign.
It’s not clear yet how the state will handle the situation; a
spokesman for Governor O'Malley did not return a phone call for
comment Sunday
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3. California: Stalemate impacts homes for disabled
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By Sandy Kleffman
Contra Costa Times
07/11/2008
Few people are following the state budget impasse in Sacramento
with as much anxiety as Steve Zolno, co-owner of 11 homes for
disabled children and adults in Contra Costa County.
Hundreds of such
homes across the state will be among the earliest casualties of
the budget stalemate. Their funding will evaporate within the
next week or two as a state contingency fund runs out of money.
Zolno and his
business partner, Lupe Henry, are worried how they will continue
caring for their fragile clients.
"It's not like we can
cut corners," Henry said. "I can't tell my staff to come back in
two weeks or reduce the amount of food we buy.
"We shouldn't have to
be in the middle of their haggling," she added. "It's
distressing and I think it's just unfair."
No quick resolution
is in sight for the budget showdown as lawmakers grapple with an
estimated $15.2 billion deficit. Democratic leaders favor tax
increases to avoid hefty service cuts. Many Republicans oppose
tax increases and favor more belt-tightening.
Budget delays have become an annual ritual in California. In the
past 30 years, lawmakers have had a budget in place by the July
1 start of the fiscal year only a dozen times.
But this year is
different, Zolno said.
In the past, he and
Henry have been able to obtain loans to tide them over until the
budget is approved. But the clampdown on credit prompted by the
national mortgage crisis has made it virtually impossible this
year, Zolno said.
He has been trying to
obtain a loan for three months.
"Nobody has seen
anything like this before," he said. "Nobody knows what we're
going to do."
The intermediate care
facilities that serve the disabled across the state are almost
entirely funded through the Medi-Cal program. As a result, they
will lose nearly all of their income when the state contingency
fund runs out, said Gary Macomber, a Sacramento-based consultant
who works with such facilities.
"Some of them can
carry on for a week or two," he said. "Some will be in dire
circumstances and not be able to make payroll."
Unlike nursing homes and hospitals, which also may have Medi-Cal
funding delayed, homes for the disabled often are
mom-and-pop-type operations that don't have large corporations
to turn to for help or other funding sources such as Medicare.
"There is no ability
to cost-shift or borrow money from another program," Macomber
said. "So it's very problematic."
Zolno and Henry
operate homes in Concord, Antioch, Pittsburg and Oakley. Each
houses about six developmentally disabled children or adults in
family-type settings. Many are quadriplegic and are fed through
tubes in their stomachs. Some have cerebral palsy. Others have
frequent seizures.
"They're beyond what
their families can take care of," Zolno said.
When the funding
stops, Zolno and Henry estimate they will lose about $100,000 in
income a week for their firm, New Way Services. They worry about
keeping staff members to care for their clients if they are
unable to pay them.
The state has a $1 billion contingency fund, plus $1 billion in
federal funding, to pay institutional Medi-Cal providers during
such budget stalemates. Last year, the fund lasted until July
24. This year, it will run out of money about the same time,
predicted Toby Douglas, deputy director of health care programs
for the state Department of Health Care Services.
Two Democratic
Assembly members, Cathleen Galgiani and Mervyn Dymally, have
introduced emergency legislation to add to the contingency fund
to ensure that homes for the disabled, adult day health care
centers and other organizations continue to receive funding.
But both bills are
stalled. Zolno accuses Senate President Pro Tem Don Perata,
D-Oakland, of holding up the measures to pressure Republicans to
reach an agreement.
"In the meantime, we
have very vulnerable people whose lives can be affected here,"
Zolno said.
A spokesman for
Perata denied that the measures were being held up as a
political tactic, and he said Perata's focus is on ending the
impasse.
"It's just the plain
fact that the state is nearly out of cash," said spokesman
Andrew LaMar. "As a policy, we're not going to be approving
massive appropriations for programs like this until the budget
is solved."
While Zolno worries
about the stalemate, others are already feeling the pinch from
previously approved cuts.
Howard Strause, owner
of Ridgecrest Pharmacy in Walnut Creek, is coping with a 10
percent reduction in Medi-Cal rates that went into effect July
1. He supplies medications to the people living in New Way
Services homes.
"All of a sudden, I'm
losing money on my prescriptions," said Strause, who operates
one of the area's few remaining independently owned pharmacies.
A monthly supply of
Seroquel, an anti-psychotic drug, costs him $830, he said, but
Medi-Cal pays him $786.
He loses $30 on a
seizure control drug called Keppra that costs him $554.
"Right now, I'm dipping into my savings but at some point I'll
have to get a business loan," Strause said.
"I'm at a loss of
what to do. My concern is the clients and their well-being. If I
don't send a medication, these clients could end up in an
emergency."
Last year, Gov.
Arnold Schwarzenegger signed the state budget on Aug. 24, the
third-longest budget standoff in 30 years. The delay put funding
on hold for hundreds of Medi-Cal providers, nursing homes, adult
day care centers, child care agencies and others across the
state.
This year, Zolno and
Henry are hoping for a quick resolution.
State lawmakers "have got us all in the middle of this," Henry
said. "This year is far more difficult than it ever has been.
We're at the end of our rope here."
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4. Massachusetts: Making the wrong move
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Summary: "The state says they're going to move my brother
into a community setting," she said. "He's already in a
community. They don't know or care about that community."
By Kevin Cullen
Globe Columnist
June 30, 2008
Their baby, their Debbie, turned 24 so Ed and Margaret Braga
had a little party yesterday at their house in Arlington. It was
hot and there are 25 steps up to the front door.
Debbie Braga's 31-year-old brother David couldn't make it. He
has all sorts of health problems and rarely leaves Seven Hills
Pediatric Center in Groton, where he has lived since he was 11
years old.
"We had him home for Father's Day, and it was a good day," Ed
Braga said. He was sitting at the kitchen table and Margaret sat
next to him and she nodded and agreed it was a good day.
They don't know how many more good days their David will have.
They just found out the state wants to move David and 30 other
people out of Seven Hills to a smaller facility.
This is the result of a lawsuit that has nothing to do with the
Bragas and other families who know only that their children have
survived and thrived at Seven Hills, long after some experts
said their kids would die in childhood.
Nobody from the state, nobody with a medical degree, has
bothered to sit down with the Bragas or any of the other
families and ask them if they thought moving the people out of
Seven Hills is a good idea.
Last week, at the annual Seven Hills family picnic, Ed Braga
pulled aside some doctors from Children's Hospital, the hospital
that got Seven Hills up and running in the first place, and
asked them whether they thought it was a good idea.
"They think the same thing we think," Braga said. "They think
this is a really bad idea. They think this will really threaten
David's health and the health of the others."
Margaret Braga remembers bringing David home for the first time,
seven months after he was born, thinking she could love her
little boy back to health. But the oxygen didn't reach his brain
soon enough, so he was mentally retarded. He had cystic
fibrosis. He was a quadriplegic. His digestive system was a
mess. His respiratory system was a mess.
Margaret would lie awake at night, listening to her son gasp for
air, unable to sleep because she thought she had just heard
David take his last breath. As David got older and heavier, they
would struggle, carrying him up those steep front stairs.
"I was like every mother with a seriously disabled child,"
Margaret said. "I thought just my being a good mother would heal
him, but it didn't."
Seven Hills saved more than David's life. It saved his parents
and his five siblings, all of whom had been devoted to caring
for him and keeping him in the family home.
And now, just like that, someone who has never met the Bragas,
never spoken to them, never sat at the kitchen table, listening
to the stories, the love, the pain of putting David there in the
first place, the doubt, the reluctant realization that it was
the right thing to do, has all the power. Somebody who knows
none of this, who has never seen the photograph of David in a
tuxedo at his sister's wedding six years ago that sits on the
bureau just inside the front door, this somebody says they know
what's best for David Braga.
"Don't we have the right to say no?" Margaret asked. "Don't we
have the right to say, 'If you move David and these other people
out of Seven Hills you're going to hurt them, maybe kill them?'
"
Debbie Braga scoffed.
"The state says they're going to move my brother into a
community setting," she said. "He's already in a community. They
don't know or care about that community."
Ed Braga looked out the window. The guests would be arriving
soon and he had to get the food out and had to be a good host
even as he harbored a bad feeling.
"They're gonna kill him," Ed Braga said, standing up. "If they
push him out, they're gonna kill my son."
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5. Washington, D.C.: Disabled Services Shrink In D.C.; 3
Residential Care Firms Quit, Citing Low Rates
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By Daniel LeDuc
Washington Post
Sunday, June 29, 2008
Dozens of developmentally disabled persons in the District's
care are being moved to new homes after three major care
providers decided to stop residential services in the city
because they said they were not being paid enough.
Almost 5 percent of the adults in the city's care -- 61 of 1,207
people -- have been moved or will be moved by mid-July.
The relocations have been disruptive for some of the residents,
many of whom have behavioral issues and lack family members to
watch out for them. Advocates say it has been extremely
stressful for residents to have to suddenly adjust to new living
environments, get new caregivers, change doctors and be sent to
new treatment and social programs.
The moves began in
January, when Philadelphia-based Resources for Human Development
left. Chicago-based Human Resources
Development Institute
will leave the District on Monday. And PSI Family Services will
dramatically cut back residential care by July 15, stopping
residential care to all but a handful of clients.
It is the largest
housing transfer of the developmentally disabled in the District
in recent memory and comes as the city faces federal court
hearings this year to determine how to improve its services.
"This is the first
time we've had this many providers leave at once," said Sandy
Bernstein, legal director of University Legal Services, which
represents many developmentally disabled people in a
long-running lawsuit against the District. "When you move
people, they have to get new doctors and have new staff working
with them. It can be very traumatic."
Laura Nuss, the
city's new head of services for the developmentally disabled,
has been praised by care providers for her diligence in her new
role. But she acknowledged that the moves had been a strain on
many of the residents and her staff.
"You'd never choose
this to happen, but the department has risen to the challenge,"
she said. "It has been a tremendous amount of change for our
individuals and for us."
Nuss said that after
the changes, more of the residents will be allowed to select
programs and doctors, leading to improved care in the long run.
Tammy Barlow, a
spokeswoman for Resources for Human Development, said its
departure was prompted by low fees.
"The funds we
received aren't adequate to run the programs needed in the D.C.
area," Barlow said. "This is an issue that the District has to
work out."
Representatives of
the other departing companies did not return messages seeking
comment.
The city kept rates
the same for more than five years but last year provided a
one-time jump of 19.2 percent. Nuss said future cost-of-living
adjustments are accounted for in the rates.
The rates are set by
the city's Medical Assistance Administration, which will soon be
renamed the Department of Healthcare Finances. Under Mayor
Adrian M. Fenty (D), Nuss, who runs the Developmental
Disabilities Administration, has more say in setting future
rates.
"We're not stopping
at 19 percent," Nuss said. "We're actively going forward."
Care providers and
advocates for the developmentally disabled say improved rates
are essential to improving care because more money allows hiring
of better staff and better training. Numerous providers contract
with the city for residential services as well as medical and
other types of care.
"The rates are simply
too low," said Marsha Thompson, who formerly headed D.C.'s
agency overseeing the developmentally disabled and now works for
Careco, a healthcare provider. "You're not going to get the
quality you need. If [a provider] can't make the dollars back
that you invest, you can't stay in business."
The two providers
leaving the District had been here two years, replacing another
agency that had been criticized for poor care. Some providers
say there could be more turnover unless rates increase.
Care of the
developmentally disabled has been a long-running problem for the
District, which was sued 30 years ago by advocates for residents
in group homes. In March 2007, U.S. District Judge Ellen S.
Huvelle ruled that the city had failed those residents and
called their care "inadequate."
In May, a federal
court monitor reported that "serious deficits" remained in care
for the developmentally disabled. Huvelle has ordered hearings
in December to determine what must be done to improve care,
possibly including a court takeover.
