In a case closely watched by disability rights advocates, a Mankato woman has won a temporary legal victory in her months-long struggle to regain control of her personal decisions from a court-appointed guardian.
Cindy Hagen, a 49-year-old who became quadriplegic after a childhood car accident, has been at the Mayo Clinic hospital in Austin since last July, even after she was deemed healthy enough to leave, because she has been unable to find enough staff to provide care at her apartment in Mankato.
After several failed attempts to move Hagen to a facility for seniors, a Blue Earth County District Court judge in January placed her under an emergency guardianship — which gave an outside entity control over nearly every aspect of Hagen's life. Hagen and her attorney have insisted that she is capable of making decisions on her own, and that a guardian is not necessary.
Now, after two months of contested proceedings, Hagen has won back her independence — for now.
A Blue Earth County District judge approved an agreement last week that lifts the emergency guardianship, allowing Hagen to transition to a home of her choosing. The agreement comes with a caveat. The guardianship will be reinstated if Hagen does not arrange in-home care and move by May 12.
Although the threat of a guardianship still looms, Hagen expressed relief that she would once again be able to avail herself of freedoms that most people take for granted. For the past few months, Hagen said she has lived in fear that a guardian would move her to a nursing home or other site far removed from her apartment and community of friends in Mankato, where she led an active life before she was hospitalized last summer for an infection.
"I finally have my freedom back," Hagen said from her hospital room. "But it's really scary to think that they could strip away my right to make my own decisions and send me wherever they want. ... What kind of life is that?"
Hagen's struggle to win back her autonomy galvanized many in the disability rights community, who have long argued that Minnesota's system for appointing guardians is heavy-handed and overused. 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 attorneys and disability advocates.
Some likened her plight to that of pop star Britney Spears, who lost control of her finances and career after a court deemed she was unable to care for herself and appointed a conservator, even as she continued to perform for her fans.
"We should all be very troubled by this case because it could happen to any one of us," said Nancy Fitzsimons, a professor of social work at Minnesota State University, Mankato. "It should be really hard to take away a person's autonomy. But in Cindy's case, her rights were stripped away simply because she was making choices that were not convenient."
The case has drawn attention to the state's severe shortage of health care workers, which has caused many people to languish in acute-care hospital rooms long after they were well enough to leave. A survey of 95 hospitals showed patients received 14,622 more days of care than necessary — in one week in mid-December. Many patients are being discharged to facilities more than 100 miles from their homes because of staffing shortages, hospital administrators say.
Hagen's case was complicated by the fact that she insisted on living independently, rather than in institutions, which is ultimately what led to the guardianship proceedings. Blue Earth County cited her repeated refusal to be discharged to skilled nursing homes and other facilities 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 guardianship petition.
In interviews, Hagen acknowledged that she sometimes gets upset with staff when she feels ignored but insists she is mentally sound enough to make decisions. Hagen noted that she has lived independently with support staff for three decades and helped lead a grassroots campaign in Mankato (called "How I walk") designed to improve sidewalk safety for people in wheelchairs.
"I cannot tell you how frustrating it is to have people, even medical professionals who should know better, treat me like I am mentally impaired when it is my physical body that is broken," Hagen wrote in a written statement to the court. "The guardianship is an extension of that."
For now, Hagen said she is confident that she will find enough staff to return home by early May. Blue Earth County Human Services has approved a robust mix of services, including round-the-clock home care. Her attorney, Misti Okerlund, said they have identified eight people prepared to care for Hagen at her home, although not all of them have completed background checks.
"Cindy is going home," Okerlund said, "and we will stop at nothing to get her there — and with her civil liberties preserved."
Hagen, who has not been outside a hospital room for nearly nine months, has begun to imagine what she will do when she returns home. She plans to plant some spring flowers, adopt a cat or two, go to rock concerts with friends and become more involved in disability rights campaigns.
"The very first thing I'm going to do is go outside and take the biggest and deepest breath of fresh air I've ever taken," she said, "and then probably bawl my eyes out."
