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."
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.
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.
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.