By Chris Serres Star Tribune
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| ELIZABETH FLORES, STAR TRIBUNE Cindy Hagen has lived in a hospital room at Mayo Clinic hospital in Austin for more than six months. |
Lying sideways in a hospital bed, in too much pain to sit
upright, Cindy Hagen felt a wave of anxiety sweep over her as she stared at the
smartphone perched next to her pillow.
There, on her screen, solemn-faced social workers and
attorneys were debating Hagen's future on a Zoom court hearing, including
whether she was capable of making her own decisions. An adverse ruling could upend
Hagen's life. It would mean that someone appointed by the court — known as a
guardian — would determine where she could live and what medical care she could
receive.
Hagen, who is 49 and quadriplegic from a childhood car
crash, waited for her chance to speak — to recount her odyssey and demonstrate
that she is of "sound mind" despite her physical limitations. Mostly,
she wanted to tell everyone in the remote hearing that it was a severe shortage
of home caregivers — and not impaired decision-making — that kept her stuck in
a hospital room in Austin, Minn., for more than six months, long after she was
healthy enough to leave. But the hearing ended before she could testify,
leaving her upset and confused.
"There is absolutely nothing wrong with my mind,"
Hagen said from her hospital bed after the hearing last month. "I don't
need a guardian. I just want to go home."
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ELIZABETH FLORES, STAR TRIBUNE “There
is absolutely nothing wrong with my mind,” Cindy Hagen said. “I just
want to go home.” She says a severe shortage of home caregivers has kept
her in the hospital room even though she is healthy enough to leave. |
Hagen's struggle to regain her freedom has become a flash
point in a broader debate over the guardianship system in Minnesota. Disability
rights activists across the state have rallied to her side and spread details
of her case on social media sites with the hashtag #FreeCindy. Some have
likened her plight to that of pop star Britney Spears, who lost control of
nearly every aspect of her life after a court deemed she was unable to care for
herself and appointed a conservator, even as she continued to perform for her
fans.
"This is a textbook case of everything that is wrong
and dehumanizing about the guardianship process," said Jonathan Martinis,
senior director for law and policy at a center for disability rights at
Syracuse University and a national expert on guardianship law.
Minnesota's system for appointing guardians — for those
found unable to care for themselves — has long been criticized as a
heavy-handed approach to supervising the care of people with disabilities. For
decades, guardians have been granted broad authority over the housing, medical
care and even the personal relationships of people they are assigned to
protect. Judges often grant this authority based on limited information and
assumptions that people with disabilities are incapable of making major life
decisions, say legal scholars and attorneys.
In 2020, longstanding concerns over the power of guardians
led state lawmakers to amend Minnesota's guardianship law to limit its use. For
the first time, courts were directed by statute to appoint guardians only after
less-intrusive options had been attempted. The changes were also intended to
encourage the use of "supported decision-making," an alternative legal
process that allows individuals to retain more autonomy.
But disability rights advocates and some attorneys say the
law is not being adequately enforced, and they are calling for greater judicial
oversight and state funding of alternatives to guardianship. They point to
recent state data showing that court orders to place people under guardianship
keep increasing, year after year. As of 2022, some 33,645 Minnesotans were
living under the supervision of court-appointed guardians — up nearly 50% since
2019, before the legislation was passed, according to the State Court
Administrator's Office.
"We need fundamental change because what's happening to
Cindy [Hagen] could happen to any one of us," said Lance Hegland, who has
muscular dystrophy and is the former co-chair of a state council on disability
services. "You can have all your rights stripped away simply because we
lack an adequate safety net."
Hagen didn't used to have regular panic attacks. She is a
nature-lover who lived in an apartment in Mankato and led an active life before
she was hospitalized with an infection at the Mayo Clinic hospital in Austin
last summer. Confined to a second-floor room, Hagen has not ventured outside in
more than 200 days. She misses the sun on her face and the chirping of birds.
She spends many of her waking hours staring out a window with a view obscured
by a hospital wall. On a sunny day, she may catch 20 minutes of sunlight
through her bedside window.
"There are times when these walls feel like they are
crushing in around me," said Hagen, recounting a recent panic attack.
"You get to the point where you feel like you just can't breathe because
nothing is happening, and the doors around you seem permanently shut."
Hagen was medically cleared for release from the Mayo Clinic
hospital on July 8, 2022, but she says that a lack of home care staff has
prevented her from returning home. Several of her longtime caregivers have
moved on, and Hagen's limited mobility makes it difficult for her to recruit
new ones. Unable to move her fingers, Hagen uses her tongue and tip of her nose
to tap out emails and texts on her smartphone to home care agencies.
The crash that left her paralyzed at age 15 also damaged her
vocal chords, which makes every conversation a physical strain. And because she
has been bedridden for so long, Hagen said she has developed a painful pressure
sore that further limits her mobility.
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ELIZABETH FLORES, STAR TRIBUNE
Cindy Hagen’s hospital room is covered with messages and how-to posters, including a Valentine’s Day note. |
But the chief source of her anxiety is a court petition
filed early last month by Blue Earth County Human Services, seeking an
emergency guardian "to protect and supervise" Hagen. A day later, a
judge appointed an Owatonna-based business, Alternative Resolutions, Inc., as
her guardian for 90 days. The judge cited Hagen's mental health problems and
struggles accessing personal care support at home as evidence that her health
and safety were at risk.
Suddenly, and with no opportunity to testify on her own
behalf, Hagen learned that many of her basic rights had been stripped away and
handed to an entity she had never heard of. The judge granted the newly
appointed guardian all the powers allowed under Minnesota's guardianship law,
including control over where she lives and her medical care. She has hired an
attorney and is contesting the guardianship order.
But Hagen said she now lives in fear that, on any given day,
she could be removed from the hospital and shipped off to a nursing home or
other institution. "How is this any different from a kidnapping?" she
asked.
Her experience is far from unique. A survey by the Minnesota
Hospital Association found that, in a single week in December, nearly 2,000
patients were stuck in hospital rooms, despite being well enough to be sent
home or to less-acute settings, largely because of a statewide shortage of
health care workers. Unnecessary hospital stays had surged 33% since the association
surveyed hospitals in September 2021, when the COVID-19 pandemic was still
raging.
Hagen's situation has been complicated by her independence
and refusal to be discharged to another institution. Hagen has spent the past
21 years living on her own in an apartment with a lush backyard and easy
wheelchair access to a nearby park. She volunteers at a local activity center
for adults with disabilities and has been a visible advocate for the community
— at times testifying at public meetings in Mankato on safer sidewalk access
for people who use wheelchairs.
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ELIZABETH FLORES, STAR TRIBUNE Cindy
Hagen’s case has become a rallying cry for disability rights activists,
who say Minnesota’s system for appointing guardians in heavy-handed. |
But Hagen's insistence on living independently, instead of
in institutions, is now being used against her in court proceedings — a
scenario her lawyer describes as "Kafkaesque."
In its petition for emergency guardianship, Blue Earth
County cited her repeated refusal to be discharged to skilled nursing homes,
assisted-living facilities and other institutions as evidence that she had
"impaired decision-making" and was "lacking sufficient
understanding of the reality of her situation," and hence was in need of a
guardian, according to the county's petition. An attorney for Blue Earth County
declined to comment further on the case.
Now, Hagen finds herself caught in another quandary: The
longer she stays at the hospital, the more she exhibits so-called "behaviors"
that can be used to justify the appointment of a guardian. In a recent
statement filed with the court, a Mayo Clinic physician maintained that Hagen's
purchase of a Christmas tree and stocking for her hospital room was evidence
that Hagen had "impaired decision-making," and failed to see that the
hospital was not a suitable living option, the statement said.
"The threat is very clear," said Hagen's attorney,
Misti Okerlund. "If you don't act in the way we expect you to act, then we
have the power and the means to deprive you of your rights."
In response, Hagen said that celebrating Christmas had
always been a cherished tradition in her family, but she denied ordering a tree
for her room. Instead, she asked hospital staff if they could give her a
printout of a Christmas tree to brighten up her room. They never did, she said.
But one morning, she woke to discover that someone had scribbled a Christmas
tree on the white board.
Now, as Valentine's Day approaches, the tree has been erased
and replaced with the black outline of a pierced heart below the initials
"V.D."
The line on the board for her anticipated discharge date is
blank.
Staff researcher John Wareham contributed to this report.
Full Article & Source:
'I just want to go home': Inside a Minnesota woman's fight to overturn a guardianship
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