Cindy Hagen's case had galvanized disability rights advocates.
People with disabilities endure many of the same challenges as older people when trying to get quality care. New Elder Voice Advocates and Elder Care IQ board member, Misti Okerlund, has worked tirelessly to defend the legal protections and rights of Cindy Hagen. Both are pictured in this front page story.
Cindy Hagen was overwhelmed as she leaned back in her wheelchair and inhaled outside air for the first time in 294 days.
A group of friends and relatives huddled in the drizzle outside a hospital in Austin, Minn., last week as Hagen, 49, a quadriplegic with limited movement of her limbs, relished her newfound freedom.
"What is that?" asked Hagen, her eyes filling with tears. "Is that fresh air that I'm breathing?" Moments later, Hagen wheeled herself into a Dodge van and began a 90-minute journey home to Mankato. Gazing out the window at the passing landscape, Hagen excitedly pointed out the spring wildflowers. "I've been away too long," she said.
For Hagen, the journey home marked a victory in a monthslong struggle to regain her independence — one that galvanized many in Minnesota's disability community and prompted renewed calls to protect the civil rights of people with significant disabilities. Hagen had been living at the Mayo Clinic hospital in Austin since last July after seeking treatment for an infection. Even after she was healthy enough to leave, she could not do so, because she could not retain enough staff to provide care at the apartment in Mankato where she had lived for 21 years.
After several failed attempts to move Hagen to a senior facility, a Blue Earth County District Court judge in January placed her under an emergency guardianship — which gave an outside entity control over virtually every aspect of Hagen's life. Hagen and her attorney argued that she was capable of making decisions on her own, and that a guardian was not necessary.
For four months, Hagen lived in fear that a guardian would move her to a nursing home or other institution far removed from Mankato. Confined to a room for 24 hours a day, with a window that looked out on a blank wall, Hagen felt her mental and physical health deteriorate, day by day. She had frequent panic attacks and nightmares of being kidnapped.
Now, her legal saga has come to an end. This week, Blue Earth County Human Services asked the court to dismiss its guardianship petition — after Hagen met the terms of a legal agreement that called for her transition from the hospital to her home before May 12.
"It feels like I've been freed from prison," said Hagen, who is quadriplegic from a childhood car accident. "But in prison, I would have enjoyed more civil liberties."
Ecstatic, Hagen yelled out, "I'm home!" as her father swung open the doors to her apartment in Mankato — a place that had sat vacant for nearly 10 months. She did several tight circles with her wheelchair. Hagen was pleased to see that the tree outside her window was bursting with green buds; and that her large collection of stuffed animals stood like sentries in her living-room cabinet, just as she had left them.
"Never, ever underestimate a quad," she said, smiling.
As the evening bells of nearby St. John the Baptist Catholic Church tolled, Hagen pondered the hours and days ahead. First, she would need a shower. Her long brown hair, which hung in a ponytail, had only been washed once since Christmas. "I'm sick of these greasy locks!" she exclaimed. Second, she would look into adopting a cat. Eventually, as her stamina improved, Hagen would reconnect with old friends and fellow disability advocates in Mankato.
"I finally feel like I'm back to living where I'm wanted, and everyone wants to be where they're wanted," she said.
Hagen acknowledged that her freedom still hangs in the balance, largely because the conditions that landed her in the hospital last summer have not gone away.
A crisis-level shortage of people willing to care for adults with disabilities has made it difficult for them to get essential help, from bathing and dressing to being transferred from their beds to their wheelchairs. Some have been forced to move into group homes and nursing facilities, where they are more isolated and have less control over their lives, say disability advocacy groups and service providers.
Statewide, vacancies for home health care jobs have more than tripled over the past three years, to 13,529 at the end of 2022, with roughly 1 in 10 positions going vacant, according to the most recent state workforce data.
"We've never seen a staffing shortage this dire," said Dena Belisle, president of the Minnesota First Provider Alliance, a state association of personal care assistant providers. "It's heartbreaking to say this, but if you don't have family and friends, and you are relying on [personal care] agencies to provide supports, then it's almost impossible to make that work right now."
Already, Hagen's in-home support team is starting to fray.
Hagen and her attorney, Misti Okerlund, had recruited a team of eight caregivers, as well as relatives, to provide her with round-the-clock care. Within 72 hours, one of her home care aides had to leave with a back injury and another didn't show up for a second shift. The challenge, said Hagen, is that Medicaid's reimbursement rate for personal care aides hasn't kept pace with inflation. Workers can make the same or more money doing less-demanding jobs, such as flipping burgers, she said.
"It used to be that, once you had your [care] team in place, you knew they would almost always show," she said. "Now you're always wondering if they're going to come back. ... It feels like a roller coaster ride that never ends."
Even so, Hagen is relieved to be in charge of her own decisions, such as hiring her own support staff. On her first night home, Hagen sat among relatives in her tidy kitchen and savored a cocktail — a small glass of rum and cream soda.
For the first time in months, Hagen could get lost in her own thoughts without the cacophony of hospital sounds — the beeping of phones and hospital staff opening and closing her door at all hours.
"I feel like a human again," she said. Chris Serres is a staff writer for the Star Tribune who covers social services.