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VOR Weekly E-Mail Update
April 25, 2008
----------------------------------------
============================================================================
Table of Contents
1. FEDERAL: House bill to halt implementation of harmful
Medicaid regulations passes
2. NEBRASKA: Beatrice employee speaks out: For developmentally
disabled, no one-size-fits-all answer
3. NEBRASKAFinding homes for Beatrice center residents could
prove difficult
4. WASHINGTON STATE: State closes six group homes for children
because workers didn’t meet state qualifications
5. FLORIDA: State house panel OK's autism-aid plan
============================================================================
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1. FEDERAL: House bill to halt implementation of harmful
Medicaid regulations passes
-----------------------------------------------------------------------------------------------------
Source: Justice For All and Families USA
This week, the House of Representatives passed H.R. 5613, the
"Protecting the Medicaid Safety Net Act of 2008," the intent of
which is to freeze until April 1, 2009 seven controversial CMS
Medicaid regulations, among which include regulations which
restrict coverage of rehabilitation services for people with
disabilities and case management services.
The Bush administration indicated an intention to veto the
legislation, which meant a veto-proof margin of 291 votes was
needed. The final vote to pass this legislation was 349-62.
The Senate must now consider this measure.
¬¬¬¬¬¬¬¬¬------------------------------------------------------------------------------------------------------------------------------------------
2. NEBRASKA: Beatrice employee speaks out: For developmentally
disabled, no one-size-fits-all answer
------------------------------------------------------------------------------------------------------------------------------------------
About the author: Judie Braun is NAPE/AFSCME chief steward at
the Beatrice State Developmental Center.
BY JUDIE BRAUN
Wednesday, Apr 23, 2008
Much has been written about current conditions at the Beatrice
State Developmental Center by people who have never been here
but read and take for granted that what the federal agencies
have said is 100 percent accurate (conveniently forgetting that
these are the same people who set the tax codes, property values
and approve spending thousands of dollars on everyday items like
water faucets). As the NAPE/AFSCME chief steward at BSDC, I'd
like to reply to many of the people who chose to hear only the
bad about us and what we do here.
"Free the People" has been the battle cry of those
anti-institution people who see no value or merit in places like
BSDC. It sounds glorious, noble and like something everyone
should get behind, right? I mean, who could be against getting
people out of those horrible, outdated institutions? A problem
with this idea is that just as each of us is different, with
unique wants, need, desires and dreams, so are persons with
developmental disabilities. What works for me might not work for
you - and you shouldn't have your choices restricted because of
what works for me!
In my opinion, the basic premise upon which the argument against
the continued existence of institutions for people with
developmental disabilities is based is fundamentally flawed -
but no one wants to talk about it because it is politically
incorrect to do so. To publicly defend institutions means we are
in denial about what is really going on. However, to not examine
one component of the anti-institution argument is to damn all
people with developmental disabilities to a life of less choice.
This one-size-fits-all philosophy of community-based supports
being far superior to services provided in an institution is
just as choice restrictive as America was when it built these
large facilities in the first
place. This single-minded approach to the pursuit of
community-based services to the exclusion of all others is based
in part on the mistaken idea that simply being in the community
automatically qualifies as a better life and guarantees that
clients' lives will be more meaningful - and that this should be
everyone's goal.
When community placement first became accepted as the best
practice, it was based on "all choice and no responsibility" -
it was felt that simply being in the community would
automatically lessen challenging behaviors brought on by having
lived in institutions. The community-based programs had more
flexibility and fewer demands and challenges, and the mere fact
of being in the community would so overwhelmingly reinforce
people with developmental disabilities that those quirky, odd,
socially inappropriate behaviors would most assuredly decrease
in number and frequency or may just disappear all together. Does
this make anyone think of Britney Spears or Paris Hilton?
While community placement often does lessen some behaviors and
can provide a more enriched and varied life, it is not the right
fit for all people with disabilities.
In my opinion, based on 27-plus years of hands-on experience,
what is NOT good for any of us working in or receiving human
services is promulgating the notion that institutions are
inherently bad and community-based programs inherently good.
There are pros and cons to both services - and we seem to forget
that no matter what types of support someone is receiving, those
providing the support usually strive to continually improve
their services. It's about finding out what works and what
doesn't work, what's important to and important for each
individual, and then supporting clients as they strive to
achieve.
It's also about obtaining more resources, offering a broader
spectrum of services that truly support individuals at all
levels and educating a society that seems to enjoy watching our
infighting while they say "tsk, tsk, tsk ... isn't that just so
sad? ... those poor people."
Our in-fighting and finger-pointing simply confirm some people's
opinions of individuals with developmental disabilities as
people to be pitied - not people who are just like them, with
the same emotions, dreams and goals.
These people then move on with their lives never having known
the fulfillment, the joy, the excitement and, yes, sometimes the
challenges of knowing, loving and supporting someone with
developmental disabilities.
Let's stop the finger-pointing and the blaming. Let us beat our
swords into plowshares and work together with our
developmentally disabled friends so that we all benefit from
lives of meaning and choice.
-------------------------------------------------------------------------------------------------
3. NEBRASKA: Finding homes for Beatrice center residents could
prove difficult
--------------------------------------------------------------------------------------------------
BY NANCY HICKS / Lincoln Journal Star
Wednesday, Apr 23, 2008
How easy will it be to find good community group homes for the
100 residents scheduled to move out of the Beatrice State
Developmental Center by Jan. 1?
Directors of community programs in the urban east see few
problems in providing alternatives to the Beatrice center - as
long as there's enough money.
But in the Broken Bows and Oxfords of the state, it will be
harder to find homes for people with serious developmental
disabilities, rural providers say.
"I honestly think we need to curb our enthusiasm a bit," said
Alan Zavodny, chief executive officer for Northstar, which
provides services for people with developmental disabilities in
22 counties of northeast Nebraska.
"We don't want to shift the problem from Beatrice to the
communities. Our employees receive $2 an hour less than those at
BSDC. So we have a lot of trouble recruiting and retaining
employees," he said.
The goal of moving 100 people from the center to community
programs is a response to a series of investigations showing
serious problems at the center, home to more than 300 people
with developmental disabilities.
The reports describe staff shortages and problems in caring for
people with serious medical issues and mental retardation.
Directors of programs that serve clients in rural areas say they
have staffing problems similar to those at the Beatrice center,
where a lack of staff has played a role in neglect and abuse
problems.
And in general, Beatrice's clients have higher needs than those
served in community programs.
Just 17 percent of the more than 4,000 clients served in
community programs have either a severe or profound intellectual
disability, according to the state Department of Health and
Human Services.
But 71 percent of the 300 or so clients at Beatrice have a
severe or profound intellectual disability.
And Beatrice residents are more likely to have complicating
medical and mental health problems.
For example, about 74 percent of clients in community programs
can walk. At Beatrice, more than half use wheelchairs, according
to HHS.
Though her agency is interested in helping deinstitutionalize
Beatrice residents, finding employees to work with people who
have serious medical and mental health needs is difficult, said
Diane Campbell, director of
Mid-Nebraska Individual Services Inc., which serves more than
400 people in 22 central Nebraska counties.
There are other issues in small towns, Zavodny said.
Is there a doctor or specialist in the community who can meet
the medical needs?
Is there a home willing to accommodate clients with serious
behavior problems?
Ever since a 2004 stabbing incident in Lincoln - where a
developmentally disabled and emotionally ill man stabbed a child
- group home providers are "gun-shy of making promises they
can't meet," Zavodny said.
State leaders have set two deadlines for the "right sizing" of
Beatrice: the first 50 people by July 1; another 50 by Jan. 1.
But about half of the first 50 are expected to move into nursing
homes, leaving just 25 moving into group homes.
"That should be doable," said Dave Merrill, director of Region V
Services, which provides services in Southeast Nebraska.
In fact, 16 of the first 17 residents to move out of Beatrice
since the countdown began in March moved to nursing homes, said
HHS spokeswoman Kathie Osterman. Just one has moved to a
community group home.
Four more residents are expected to go to nursing homes next
week, she said.
The numbers are goals, said John Wyvill, director of
developmental disability for HHS.
"The big issue is to make sure we have the right match," he
said.
An evaluation team looks at the location, the needs of the
individual and the wishes of the guardian, he said.
ENCOR, which provides services in the Omaha area, already
provides homes to people with serious medical issues, said
director Bob Brinker.
Its clients have feeding tubes and tracheotomies. Some have
seizures. "We have people we have to catheterize and people in
wheelchairs."
"We do have folks who need total care," he said.
So he doesn't see a problem with placing the first 25 residents.
"The second 50 may be more challenging," said
Merrill, of Region V Services, said money will help determine
how quickly Beatrice residents find new homes.
The state is negotiating the funding - a mix of federal and
state money - for these clients as they move to community-based
care programs.
"As long as the funding is reasonable for the needs of the
people being placed, we can make it work," said Merrill, whose
agency opened a group home in Beatrice that will eventually
house two of the center's clients, plus a third person.
And his staff is considering a new home in Crete, Merrill said.
--------------------------------------------------------------------------------------------------------------------------------------
4. WASHINGTON STATE: State closes six group homes for children
because workers didn’t meet state qualifications
-------------------------------------------------------------------------------------------------------------------------------
M. ALEXANDER OTTO
The News Tribune
April 24th, 2008
The state has shut down six group homes for developmentally
disabled children after inspectors found workers who did not
meet state qualifications.
Because of the unqualified workers, “We have questions about
medical care, supervision and transportation to school,” said
Karen Lee, spokeswoman for the state Department of Social and
Health Services.
The homes – three in Bremerton, and one each in Lakewood,
Renton, and Poulsbo – are run by Ujima, a Tacoma-based
organization in business for eight years. Fourteen children
living in the homes have been moved, the last on Monday.
On an unannounced visit two weekends ago, state inspectors
discovered several workers didn’t have high school diplomas or
equivalency degrees, Lee said this week. In addition, social
service staff members did not have master’s degrees, as required
by the state. Another worker had a theft conviction that should
have prevented her employment, Lee said.
The company’s owner, Morgan Powell, said the hirings were an
oversight, and that he will appeal the closures. To prevent a
repeat of unqualified hirings, he said he will have “different
types of administrators” overseeing the process.
Close to tears, Powell said the state’s move has been
“devastating.”
“We are not a rogue agency,” he said.
The homes are limited to five residents. They provide
round-the-clock care to developmentally disabled children who
have severe behavioral problems and who are on medication.
The company employs 60 people, Powell said. Its name is a
Swahili word for one of the seven days of Kwanzaa. It celebrates
community and responsibility.
Over the years, “we have loved and nurtured 25 some-odd children
that have thrived in our care,” he said.
Staff members succeeded in getting one child a much-needed
kidney transplant, after the child was initially turned down,
Powell said.
“This is my life,” he said. “I’ve cared for these children like
they are my own.”
---------------------------------------------------------------------------
5. FLORIDA: State house panel OK's autism-aid plan
---------------------------------------------------------------------------
Summary: A House proposal could provide more healthcare and
education options for children with developmental disabilities,
but some lawmakers worry about how much the plan would cost the
state.
Wed, Apr. 23, 2008
BY BREANNE GILPATRICK
The Miami Herald
TALLAHASSEE -- A major healthcare plan to help children with
autism and other developmental disabilities cleared a key state
House council Tuesday, bringing Florida a step closer to
providing universal insurance for kids.
For the first time, private insurers as well as Florida's
KidCare health program would be required to provide services to
children with disabilities, under the plan unanimously approved
by the House Healthcare Council. Advocates praised House Speaker
Marco Rubio for pushing the proposal, providing a rare sense of
relief in a legislative session when programs for the poor, sick
and disabled are being slashed as part of $5 billion in budget
cuts.
Among the cuts: upward of $180 million in programs for the
developmentally disabled. That irony aside, advocates and
insurance lobbyists also noted that lawmakers are pushing ahead
with a separate affordable health-insurance plan that reduces
government mandates rather than requiring more of them.
If the proposal passes, Florida would be one of 12 states to
require insurance companies to cover treatment for children with
autism. But key questions need to be answered, such as how many
children will be served, what will happen to KidCare and whether
the proposal will make health premiums more expensive.
A big roadblock: time. The 60-day legislative session is
scheduled to end May 2. And some insurance companies, as well as
some senators, are privately balking at the late-in-the-game
proposal.
''I know it's late in session -- two weeks left. I know it's a
broad thing, a big proposal, but I think it's worth our time,''
said Rubio, who began pushing the House measure after a friend's
child was diagnosed with autism.
More and more children are being diagnosed with autism, experts
say, but no one is sure why. Right now, one of every 150
8-year-olds has autism. Virtually everyone agrees that early
intervention and therapy can make a big difference.
Under the plan, a child would be able to receive $36,000 a year
in services -- for a lifetime maximum of $108,000 -- and allow
more parents to enter the program by paying the full premium.
In the past, concerns about rising insurance premiums have
killed the idea. But Tuesday, representatives from the Florida
Insurance Council and Blue Cross Blue Shield of Florida told
sponsors they support the plan.
Senate Democratic Leader Steve Geller of Cooper City is pushing
a similar proposal, though it only includes a private-insurance
mandate for autism and no other disability.
Geller said some people are concerned that the House's broad
proposal would cost too much and worries that covering
developmental disabilities in KidCare could raise the cost of
premiums and break the bank. Next year's proposed budget
includes an extra $36.4 million for KidCare enrollment, enough
for 38,000 additional slots.
''I am concerned that this year adding a big fiscal hit to the
state could be problematic,'' Geller said. ``I like what they're
doing. I'm just worried about the funding for it.''
On the other hand, some parents say the plan should do more. The
proposal's $108,000 limit in lifetime coverage is not enough for
parents spending thousands each year, said Carmen Zaldivar, a
Miramar mother who has a 13-year-old son with autism.
Hilda Mitrani, of North Miami Beach, said autism therapy made a
huge difference for her 13-year-old son, David. When he was
diagnosed on his second birthday, he wasn't making eye contact,
wouldn't speak and wouldn't respond to his name.
His parents scrimped to pay his $40,000 annual therapy bill.
Today, he attends a public school in Broward, where his father
lives, and last year he learned Hebrew and celebrated his bar
mitzvah.
''Some parents are able to spend a great deal of money to help
their children,'' Mitrani said. ``But every child deserves a
chance.''
----------------------------------------------------------
Tamie Hopp
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