Rochester woman turns stories of her own struggles into advocacy for others in need

Even if everything in her own life had gone smoothly, Toni Kay Mangskau most likely would still be an advocate for others who need help. But her life has not gone smoothly at all.

The Rochester woman, who is 58, remembers wanting to help people even as a kid in tiny Stewartville, Minn. She befriended a family of Vietnamese immigrants whose children were being bullied, was voted "class nonconformist" in high school for speaking up when she saw injustices, helped a teacher run for the Legislature, volunteered with the local food bank and dreamed of a career helping people as a social worker.

Later, as a single mother and caregiver for five family members, she juggled challenges, often simultaneously, that would overwhelm many people if they happened even one at a time.

She has helped loved ones deal with chronic disease, chemical dependency, mental illness, incarceration, end-stage heart and lung disease, blood cancer, developmental disability, lack of health insurance and death in an understaffed care facility.

And she's done it all while working full or almost full time, trying to get from paycheck to paycheck, undergoing a double mastectomy after a mammogram detected precancer. Oh, and volunteering.

She believes that her success as an advocate did not happen despite all of those struggles but because of them, that her firsthand knowledge provides a solid foundation for her empathy and persuasiveness.

"Any issue that I've been involved with, there's some type of personal connection," she said.

Most recently, Mangskau spoke to the Legislature on behalf of paid family and medical leave, which was passed into law in the 2023 legislative session. Set to launch in 2026, it will provide partial wage replacement for workers when they have a child or adopt one, or when they or a family member have a serious health condition.

AARP Minnesota recognized Mangskau's work on the paid leave bill by giving her its 2023 Award for Excellence in Advocacy, celebrating her "commitment, perseverance, and collaboration" to improve the lives of people 50 and older and their families. Last year, her advocacy efforts were recognized by the National Patient Advocate Foundation.

Paid leave will help many of the estimated 530,000 people in Minnesota caring for children or older family members or friends with things like dispensing medicine, bathing and dressing, preparing meals — work valued at $10 billion, according to AARP Minnesota. These caregivers often have to cut back on paid employment and shoulder potentially crushing financial hardship.

People who know Mangskau say her close-up view of these problems gives her advocacy extra power.

"It's incredible to me how she's turned a lot of pain in her own life — but also an incredible amount of love — into a public life that is making a difference for other people across Minnesota and is going to make impact across our country," said Olivia Bergen, an organizer for Isaiah Minnesota, a coalition of faith communities with which Mangskau is active.

Constituents who share their own experiences are "hugely effective" influences on lawmakers' votes, vividly highlighting issues the legislators might not have personally experienced, said State Sen. Liz Boldon.

"In fact, it's probably the most effective thing constituents can do," said Boldon, whose district includes Rochester.

But Boldon and other associates also note that Mangskau's skills extend beyond describing her hardships. They praise her energy, determination and skill at recruiting others to become involved with an issue.

Jenny Cannon, lead pastor at Christ United Methodist Church in Rochester — which Mangskau attends and where she is (of course!) active — recalls how skillfully Mangskau organized a public conference about local caregiving resources at the church that included a panel with seven other speakers.

Cannon, who sat on the panel, remembers thinking, "Oh, this is what she does with an idea."

"You know how some people you kind of brainstorm with — and nothing happens, right?" she said. If you mention something to Mangskau, "you'd better want it to happen.

"I think Toni's a force of nature," Cannon said.

At a time when Mangskau was worrying about how to pay her rent, a social worker gave her what she still considers some of the worst possible advice: "The first thing you need to do is sell your vehicle. The next thing you need to do is get remarried."

She was a single mother, having fled from what she says was an abusive marriage and working part-time, also as a social worker.

"I have no idea how I made It through all that," she said of those years.

Her son was diagnosed with Crohn's disease at age 16 and was "pretty much bedridden for two and a half years," taking more than 20 pills a day, along with injections. She desperately needed her vehicle to drive him on his frequent visits to the emergency room, which, as time passed, he had to use for his regular health care because he had no health insurance from age 20 to 25.

Predictably, Mangskau advocated for the Affordable Care Act of 2010, which requires insurance companies to cover pre-existing conditions and lets parents keep their kids on their employers' health insurance until they're 26.

"I was out at rallies, talking to elected officials, really pushing for it," she recalled.

Meanwhile, her daughter was battling chemical dependency and mental-health problems. She started using drugs at age 12, meth at 15.

She arranged to have her daughter admitted for residential addiction treatment when she was 15, but the county wouldn't pay for the $40,000 cost unless Mangskau gave up custody to the state of Minnesota. Feeling she "had failed as a parent," she did that.

Not until years later were laws passed preventing insurers from providing less favorable benefits on chemical dependency and mental health care than for other types of health care.

The girl remained a ward of the state until she was 18, then spent years in and out of incarceration, often living on the streets. Mangskau lost touch with her for several years. Her daughter had three children, all of whom lived with Mangskau for a while, and her daughter finally broke free of chemicals at age 27. She has been in recovery for eight years.

In 2012, Mangskau became a care provider for her parents, "setting up meds, helping with all the insurance issues and just anything and everything they needed." Both died in their 80s — her father of end-stage heart and lung disease, her mother of blood cancer.

Her father "had the perfect death" in 2016, she said. But five years later, things didn't go nearly as well for her mother. She had spent down all of the assets and qualified for medical assistance. Mangskau found her an opening in a residential hospice home, but the hospice cost $300 a day out of pocket.

"I couldn't afford that, my siblings couldn't do that," Mangskau said, so her mother lived in a short-staffed skilled nursing facility providing inconsistent care,

"She went over 20 days without eating, and that was a miserable death."

Her parents' last request of her was to take good care of her brother. So Mangskau became guardian of her brother, who has a severe developmental disability and other health problems and lives in a group home. Eventually, two of her siblings became co-guardians.

These days, Mangskau focuses on her job, her advocacy and her volunteer roles.

As a social worker, she helps cancer patients connect with resources and new treatment developments.

"I love my job," she said.

In November, she spoke to the Rochester City Council against a proposed ordinance that would criminalize camping on public property, making it a misdemeanor and subjecting people without homes to potential fines and jail time.

"It criminalizes poverty and places additional barriers around future employment and ability to access stable housing," she told the council.

She volunteers with Three Rivers Restorative Justice, a program that seeks to get offenders together with the people they harmed to make reparations and avoid harsher sentences.

Mangskau often goes an extra step, said the program's co-founder, Kendall Hughes. For instance, she helped two juvenile girls who stole money from a store build a relationship with the store owners, who took the girls "under their wing," he said.

"She was able to turn something that was harmful into something positive," Hughes said. "That encapsulates Toni — she looks at the deeper issues and makes sure needs are met there."

Erin Parrish, associate state director for advocacy and outreach at AARP Minnesota, described Mangskau as "someone who doesn't give up no matter how long it takes to get something done," even if she encounters obstacles or is told her goal will never happen.

"She just keeps plugging along and putting in the effort and doesn't walk away," Parrish said.

Specifically, Mangskau's plans involve focusing on inadequate medical care in prisons and jails, lack of affordable housing, health care, homelessness. She dreams of there someday being an all-purpose caregiver resource center — perhaps in Rochester — where caregivers could go for information and support.

"I want to be involved with those tough issues, the ones that society has started to recognize, and make positive changes," she said. "Give me a challenge and I will be right there."

Based on her track record, Rochester officials might want to start scouting around for a place to build that caregiver center.