In
the midst of a state scandal, Indiana picks a fight with
the feds
Is
your state, like Indiana,
planning on making a plan to plan its Olmstead compliance
plan?
Then
you'll want to see this backward state get its
comeuppance.
July 3, 2000
by Teresa Torres, Clearinghouse advocate in
Indiana
Adapt
photo by Tom Olin
A Golden
Urinal
HHS
Secretary Donna Shalala was in Indianapolis almost a year
ago to issue a challenge at the annual meeting of the
National Conference of State Legislatures for states to
get moving -- and fast -- on an Olmstead Plan to give
people with disabilities real choices. (According to
Adapt's Bob Kafka, Indiana has one of the worst track
records in supporting institutional placement over
community supports. Indiana is winner of an Adapt "Golden
Urinal" award.)
Indiana's
response to Secretary Shalala's challenge was to plan on
planning a plan to plan the plan. Peter Sybinksky,
Secretary of the Family and Social Services
Administration (FSSA), created a planning committee of
state employees to "deal with the Olmstead
situation."
Meanwhile,
Indiana's Protection & Advocacy lawyers declared that
the Olmstead decision applied only to people in mental
institutions. (Take
note of this error. It will resurface later in this
report, out of the mouths of state officials.)
The "advocates" who had worked on the state's "317 Task
Force" (a response to scandals at several state MR
facilities) trotted out their old reports. The state
Independent Living Council (and all but one CIL) didn't
seem to have a clue about what the Olmstead decision
means in everyday life at street level.
Thanks but no
thanks
When
Adapt's Bob Kafka came to Indiana to give a workshop on
the Olmstead decision at last December's Governor's
Planning Council conference, no one from the a state
department attended. And the only Center for Independent
Living which attended was Everybody Counts (ECCIL), one
of the first to sign on to Freedom Clearinghouse and also
sponsor of Indiana's first Adapt Chapter. (I'm privileged
to be the head radical on ECCIL's staff of
troublemakers.) Using the tools in the Jumpstart Kit, we
contacted the HHS Office of Civil Rights regional office
in nearby Chicago to offer our help in getting Indiana on
track.
In
March of this year, an HHS team from that office, led by
Arturo Garcia, came out to Indiana to meet with state
officials and the advocacy community. Again, no one from
the state bothered to show up. They were invited. They
just didn't show.
Indiana's
"advocacy" community remained as splintered as ever.
ECCIL tried to pull together a meeting of CIL directors
and/or SILC members to talk about how they could work as
a resource for those state assessments of people who are
currently institutionalized. The answer was a "thanks,
but no thanks" letter.
The waiting
list is closed
ECCIL
helped eight people file formal complaints against the
state. [How
can you do that? Click here.] Five
were folks trying to get out of nursing homes. They had
been denied the opportunity to even apply for a state
Medicaid waiver. (As if it were a bad back road out in
the boonies, the Indiana waiver's waiting list has been
closed for two years.)
Three
other people whom we helped to file complaints were in
danger of being forced into nursing homes. They had been
caught leaving their homes when they had to be
"homebound" to get on
the state's attendant services waiver. One was a woman
who left the house to see her daughter take part in a
school play.
Adapt
attorney Steve Gold began work with ECCIL to file a class
action lawsuit against the state. Four of the eight
original complainants would be named class
representatives. Gold's attempts to avoid the lawsuit by
negotiating with the governor's office failed just as
miserably as HHS' efforts to get the state's respect and
understanding of the law. Again, Indiana said, "No
thanks."
Scandal
erupts
Then
all of a sudden, in June, word came that the state's
leading newspaper, the Indianapolis Star, would
soon publish an investigative report about nine people
who had died while being "transitioned" to the community
from one of Indiana's troubled state MR institutions.
Claiming that he had been misinformed about that
transitioning, the governor demoted Secretary Sybinsky
and fired the Director of Disability, Aging and
Rehabilitative Services [the state's Medicaid
Director] and another staffer. Governor O'Bannon's
expected competitor in the upcoming gubernatorial
election went on record demanding a special investigation
by the U.S. Department of Justice. Suddenly Karen Davis,
General Counsel for FSSA, was designated as the lead
person for Indiana's Olmstead Plan.
Davis
told Garcia that there had been some "misunderstanding
about the regulations" by the state's Area Agencies on
Aging (AAAs administer Indiana's Medicaid Waiver
programs.) Then she quickly fired off a letter to the
AAAs, each contracted provider, and all waiver
recipients.
That letter told the recipients that
"you are not required to be
confined to your home in order to continue to receive
services under the waiver. Although you must meet the
program requirements for the waiver, which include a need
for medical services, you are not required to show that
you can never leave your home, or do not intend to leave
your home.....[W]e regret that you have received
incorrect information."
This time,
it's the state that's "caught"
Garcia
handed out copies of that letter to each of the
complainants during a meeting scheduled at Everybody
Counts. He told those in attendance that the three
Indiana complaints -- from people whose home health
supports were threatened when they left their home -- had
brought this state turnabout, and also "launched a
dialogue between HCFA, Medicare and Medicaid not only in
Indiana, but nationwide." He said, " The Office of Civil
Rights has had a dialogue on this concern with people
from HCFA at the Central Office in Baltimore Maryland,
and they agree that there is a misinterpretation of the
difference between the Medicaid rules and the Medicare
rules, and the homebound requirement vs. the
non-homebound requirement and that this a national
problem." [Take the hint,
advocates. If your state applies homebound rules to
Medicaid waivers, call your HHS Office of Civil Rights
right now.]
He
also said there may be a question about the Medicare
"homebound rule." That rule may not, in fact, square with
the "most integrated setting" requirement of the ADA and
the Olmstead decision. That question is now being
addressed at HHS.
The state
finds itself innocent
In
the cases of the five people who filed complaints about
not being allowed to live in the community, Garcia had
more news: The state had investigated itself and found
itself not to be at fault. According to the state, none
of the five individuals who claimed denial of the
opportunity to live in the community were on the waiting
list for the Aging and Disabled Waiver. Therefore they
must not have asked to live in freedom. (Yes, you guessed
it. They had tried more than once to get on the waiting
list, but were told either that the waiting list had been
closed or that somebody would get back with them,
someday, sometime.)
Now,
Garcia said, the state has told our local AAA that they
must "assess" those five individuals to determine what
kind of supports they require. HHS tried to obtain
information from Indiana about what kind of "assessments"
were conducted, and what the qualifications are of the
people who do assessments, but, according to Garcia,
Indiana has not yet provided that information. "We don't
know, but we need to know. It's very important. That's
one of the elements of the plan," he said.
That error
about Olmstead resurfaces
Garcia
also told us that HHS had some other problems with
Indiana's plan-to-make-a-plan. One example he provided
was that "Indiana, for some reason, argued for some time
that the Olmstead decision only covered persons with
mental illness or mental retardation." He said that while
there would be immediate response to the eight
complainants, work will continue in earnest to bring all
of Indiana into compliance with Olmstead.
In
the meantime, Garcia has warned the local AAA about
violating confidentiality laws, and taking any kind of
retaliatory action against anyone who filed complaints
through HHS. "Ultimate responsibility for [the local
AAA] is to do what the state has asked them to do.
Ultimate responsibility of the state is to see that they
do it in compliance with all federal civil rights
regulations. They are accountable to the state, and the
state is accountable to the federal government."
- -
- -
Postscript:
"Olmstead is not going to go away."
At
a late-June meeting with ECCIL, Arturo Garcia announced
that his office, the Region Five HHS Office of Civil
Rights, had been selected by HHS to develop the essential
elements of state Olmstead Plans for the other nine
regions to use in their monitoring activities.
Pledging
HHS' commitment to see the Supreme Court's Olmstead
decision implemented by states across the nation, he
said, "This issue is not going to go away." Responding to
our questions about the huge nursing home lobby that will
work to prevent Olmstead compliance, Garcia said that
there were also huge advocacy organizations working to
ensure that states comply with the Court's directive.
"There are even websites dedicated to Olmstead," he said,
"like Freedom Clearinghouse, and Adapt's."
A big question
remains
Now
that Indiana must "assess" people when they ask for
community support services to get out of nursing homes,
will it be state agencies doing the "assessments?" One
ECCIL employee put it this way: "What! Is my life going
to be decided by some $5-an-hour transient? Can't my own
doctor make an assessment? What about somebody who works
at a local CIL?"
Garcia's
reply: Thanks to those five complaints, his office can
follow a few specific people and see exactly what the
state means by "an assessment," what is the state's
"assessment tool," what are the assessor's
qualifications, and who is the state willing to work with
to benefit the individual.
It
seems to me that now we're back to what Bob Kafka urged
in December: that CILs should help states to determine
what people will require to live independently -- aka
making "assessments."
We
all know that CILs aren't perfect, but they usually have
more experience with independent living than state agency
employees.
Send
e-mail to Teresa Torres
Freedom Clearinghouse began as a joint project of
The
Advocado Press,
publisher of Ragged
Edge magazine,
and Free Hand Press, publisher
of Mouth.
The Advocado Press has withdrawn its involvement and support. Its editor,
Mary Johnson, sent an email of resignation which said, "I have too many
irons in the fire."
This website is now maintained by Cal
Grandy and Lucy Gwin of Mouth, who had plenty of irons in their own
fires already, thank you very much.
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