'Geography is destiny' for families living with disabilities in Minnesota

MORA, Minn. – Born four months premature, Michaela Johnson was so tiny she fit into the palm of her mother's hand.

She was blind, suffered from chronic lung disease and had epilepsy. Doctors warned that she might need a ventilator for the rest of her life.

Frightened and overwhelmed, Michaela's parents sought help from a government program that covers in-home nursing for medically fragile Minnesota children and people with disabilities.

To the couple's dismay, Pine County officials said no. Michaela's mother, Michelle, remembers county officials telling them to call 911 if their daughter's oxygen machine stopped working or if she suffered a prolonged seizure.

A year later, the Johnsons applied again, and again Pine County said no.

Finally, worn down by constant anxiety and repeated trips to the emergency room, the Johnsons turned to their last resort: They sold their house and moved 40 miles west to Kanabec County.

Two months later, Michaela was approved for more than $60,000 a year in home care and medical equipment.

"You get to the point where you're told 'no' so many times that you have no choice: You have to pack up and leave," Michelle Johnson said from the family's new home in Mora.

The Johnsons are among tens of thousands of Minnesota families whose lives are upended by the arbitrary and confusing way Minnesota distributes money designed to help people with severe disabilities. This coveted assistance, disbursed by counties in a form known as Medicaid "waivers,'' supplies people who have qualifying disabilities with more than $3 billion a year.

But county policies are so inconsistent and capricious that some families have become nomads, pulling up roots and moving long distances just to obtain the essential care to which they are entitled under state and federal law.

Records examined by the Star Tribune reveal startling disparities across the state. Last year, for example, Dakota County paid an average of $109,000 per family for a waiver that covers the highest level of medical and personal services at home, while Stearns County paid $50,000. For a waiver helping people with traumatic brain injuries, Scott County paid $105,000 per recipient, while Pope County paid just $22,500.

About 86,000 Minnesotans currently receive waivers, a population that ranges from single moms to urban professionals. But one-fifth of Minnesotans live in "waiver deserts," places where counties almost never grant the waivers designed for those with high medical needs. Nearly 60 counties have given zero or relatively few of those waivers over the past five years, according to a Star Tribune analysis of state Medicaid records.

"Geography is destiny, when it comes to waivers," said Roberta Opheim, Minnesota's ombudsman for mental health and developmental disabilities. "The geographic disparities are real and deep."

Rather than establish uniform standards for waivers, which are funded with state and federal money, the agency that oversees Medicaid has allowed counties to develop a confusing patchwork of policies that limit or bar access to home care, even in the case of life-threatening conditions.

As a result, nearly $450 million in waiver funds that were available to counties has gone unspent in the past three years, a Star Tribune analysis shows.

"This shows a reckless disregard for the people that Medicaid is meant to serve," said Sen. Michelle Benson, a Ham Lake Republican and chairwoman of a legislative committee that oversees Department of Human Services (DHS) spending.

In interviews and written responses, DHS officials defended the system but acknowledged a need to streamline waiver approvals and make them more consistent across the state. The agency said it has proposed a multiyear plan to allocate waiver funding based on an individual's needs, rather than relying on county and tribal governments to make those decisions. It also would update the menu of services available under all four of the state's disability-related waivers to ensure they are consistent.

"At any time, if we hear of difficulties that individuals are having, it's a concern and it's painful to hear," said former Deputy Human Services Commissioner Claire Wilson, who left the agency last month. "We have been working in a very focused way … to do all that we can to develop the system to be more uniform statewide."

DHS officials said the $450 million in unspent waiver funds reflects lower-than-projected costs, as well as the difficulty of forecasting demand from people with disabilities.

County officials say they adhere strictly to state guidelines and don't have local rules that limit access to waiver benefits. The top human services administrator in Pine County, for example, denied that the county has a policy denying waivers to infants, while declining to comment on a specific case such as the Johnsons'.

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For many families, obtaining a Medicaid waiver is a path to domestic peace and economic stability. A waiver can unlock tens of thousands of dollars' worth of in-home services, from help with household chores to nursing care to paying for wheelchair ramps.

With a waiver, parents of a severely disabled child can return to work, resume a normal social life, and get expert advice about disabilities that are otherwise mystifying and frightening.

Without it, many parents struggle with sleep deprivation, constant stress, joblessness and terrible isolation.

For some, the only way out of this grinding struggle is to move, leaving behind family, friends, work, church and community. Each departure is a gamble: There is no guarantee that the next county will approve a waiver once the family has moved and been reevaluated.

"It's a scary proposition to sell your house and uproot your family with no certainty that services will materialize," said Stacey Vogele, a support planner from Cottage Grove who advises families on waivers.

It's a chance many families are willing to take.

Kathie Baxter, an Elk River woman whose 20-year-old daughter has severe mental health problems, moved last fall from Sherburne County, which rejected her request for help, to Dakota County. Now, she is getting tens of thousands of dollars to pay for a home caregiver and regular life-skills training.

Kacey Dehncke, whose son, Isaiah, has severe autism and behavioral problems, moved more than 100 miles, from her hometown of Lowry to Anoka County, which found that Isaiah qualified for nearly $40,000 a year in services.

Some families report moving several times in their quest for the right waiver.

"Your ZIP code should never dictate what level of services you get through Medicaid," said Sen. John Hoffman, DFL-Champlin and a member of the Senate human services committee. "The state is not doing nearly enough to ensure that we have a single, unified system for all people with disabilities."

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One morning last spring, as she drove to the grocery store with her sister, Tamara Frazee spotted an ambulance and police cruiser parked outside her son's elementary school in Janesville, Minn. For a moment, Frazee feared the flashing lights were for her son, who has autism spectrum disorder and suffers from anxiety. He had been struggling to control his impulsive behavior and wild mood swings.

Two hours later, as Frazee unpacked her groceries, she got a frantic call from the local police chief. He said her son, then 10, had stabbed a school employee with a pencil, then punched and head-butted others as they tried to restrain him, and had been sent to a juvenile detention center in Rochester.

Frazee fell to her knees on the kitchen floor and "began bawling my eyes out," she recalled.

Then came waves of anger and bitterness. For months, she had warned county social workers that Trystan was not getting adequate therapy for his anxiety and mood disorders. His violent meltdown, she felt, could have been prevented. "They made Trystan feel like a criminal," said Frazee, who sells plumbing supplies. "But Trystan is a good kid. He just needs more help than I can give him."

Frazee said Trystan's downward spiral began shortly after a Waseca County social worker visited their home in the spring of 2017. At the time, Trystan was receiving about $50,000 in annual benefits under a Medicaid waiver, enough to pay for regular visits by therapists who taught him ways to control his behavior as well as personal care aides who helped him to develop life skills.

But after a single evaluation, the county slashed his budget by more than a third.

Jane Hardwick, executive director of the Minnesota Prairie County Alliance, which includes Waseca County, declined to comment on Trystan's case, citing privacy concerns. She noted, however, that a person's annual waiver budget can change based on a variety of factors, such as an improvement in "undesired behaviors," reported by individuals during an assessment.

Suddenly, the Frazees could no longer afford in-home therapy and other supports. Trystan became depressed and stopped leaving his upstairs bedroom, where he spent hours playing his favorite video game, "Fortnite." His academic performance plunged. He began cutting himself with pens and a knife and avoided any adults who resembled authority figures. Before long, parents in their quiet neighborhood would call their children indoors when they spotted Trystan outside.

As loneliness set in, so did the realization that they could not stay in Janesville.

In June, nearly a year after her son's waiver benefits were cut, Frazee put her white colonial up for sale. She set her sights on Austin in Mower County, about an hour away, based on the advice of multiple parents and a local real estate agent who specializes in helping families with disabilities.

The decision to leave home has been searing for the Frazees.

"This is where little Trystan took his first steps," Frazee said, pointing to the worn kitchen floor. "And that's the driveway where he rode his first bike."

Frazee teared up as she recalled Trystan saying his first words in their living room, now cluttered with moving boxes. "We've put a lot of sweat and tears into this place. It's going to be tough to leave."

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Minnesota has been promising to fix the Medicaid waiver system for a long time.

A decade ago, DHS embarked on an ambitious overhaul of the way county officials evaluate waiver applicants and set the amount of help a family receives. The automated new system, known as "MnChoices," was designed to reduce human subjectivity and ensure that decisions would be fair and consistent.

Launched in 2014, MnChoices is now widely viewed among disability advocates and county social workers as a costly debacle.

Consider the Community Alternative Care waiver, which covers services and equipment for medically fragile people who require hospital-level care. Sixteen Minnesota counties have not approved even one of these waivers in the past five years. Other counties, including Dakota and Hennepin, approve scores of them each year.

Records examined by the Star Tribune show a similar pattern with a waiver for people with brain injuries. Overall, about 1,400 of these waivers were granted statewide in each of the last five years. Yet 49 counties have given either zero or just a handful of them in that same period.

Counties also differ in the range of services they provide on a waiver. Some counties will pay parents to care for their children up to 40 hours a week, while others cap the "paid parent'' benefit at a much lower level. Many counties approve alternative forms of therapy, such as aerobic training and swimming lessons, while others will not.

"When it comes to the Medicaid waiver, there are some counties that are so far off the grid it's like the Wild West," said Dawn Thorn, a certified support planner who advises families on waivers. "And it doesn't pay to be a pioneer."

DHS officials maintain that MnChoices, while imperfect, is an improvement over the previous, paper-based system, which was more subjective and had more varied outcomes based on the county or the individual assessor. "The purpose of MnChoices has been to ensure that we have consistent eligibility criteria embedded in the system," Wilson said.

Still, across Minnesota, county websites provide inconsistent and sometimes conflicting information on waivers. Some provide no information at all. Families struggling to navigate the system often turn to social media for help, and Facebook forums have become a primary source of guidance on county policies.

When Kathie Baxter's daughter was turned down for a waiver in Sherburne County, she posted a simple question on Facebook: "What is the friendliest county for waivers?''

Within minutes, messages poured in. Most recommended Dakota County, which has a generous reputation. State records show that Dakota County has just 8% of the state's population, yet accounts for 16% of all spending on the Community Alternative Care waiver for people who require hospital-level care at home.

Baxter sold her house in Elk River and moved to an apartment complex in Burnsville. Her new apartment is small, and the monthly rent is nearly three times her old mortgage payment. Still, the move paid off: Within weeks, her daughter was assessed and approved for a waiver that pays for a home caregiver and regular life-skills training.

"I would do it all over again, a million times over," Baxter said. "You almost can't believe your dumb luck when you finally get on the [waiver] program."

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Minnesota officials do not track how many people migrate between counties for Medicaid services. But the number is large enough that a cottage industry of real estate agents and consultants now cater to such families.

Tony Farah said it took him nearly four years of repeated evaluations before Hennepin County officials finally approved in-home services for his 14-year-old son, who has autism spectrum disorder. The experience so frustrated him that he decided to get a real estate license and help families navigate the waiver system.

Medicaid waivers, he argues, are as crucial to a family's well-being as access to good schools and safe neighborhoods.

He even has a term for some of his clients: "Waiver migrants."

One evening in July, Farah led a young couple on a tour of a ranch house in Rose­ville. The couple, who have two school-age boys with autism, liked the house and the spacious yard, but they spent much of the tour asking Farah about various counties and their records on waivers. Their energetic 10-year-old did somersaults on the front lawn as the couple spoke longingly of securing a waiver that would pay for behavioral therapists in their home.

Kyle Halverson, the boys' father, said he fears they may be running out of time for the boys to benefit. His sons, ages 10 and 8, had been denied waivers since they were toddlers. With each year, the children were becoming more difficult to reach with behavioral health services. This year, their oldest son, Kyle Jr., had begun having meltdowns so severe that they would last several hours; sometimes, he would punch and hit himself until he was bleeding, he said.

"Our window of opportunity to help our kids live full and successful lives will close if we don't get a waiver soon," said Halverson, a metal fabrication worker.

His partner, Kassidy Schmatz, added, "You can check all the important boxes — good schools, good neighborhood, good parks — but if you don't have that waiver, then none of that really matters."

Weeks later, they would move to Blaine, in Anoka County.

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Kacey Dehncke says she still feels guilt that she didn't leave her hometown of Lowry, Minn., immediately after her 3-year-old son was denied a waiver.

"I stuck it out way too long," she said.

Dehncke, a widow, first noticed that something was different about Isaiah a few months after he was born. His eyes wouldn't focus and he would sometimes grow unresponsive for minutes at a time, staring blankly into space. When relatives tickled his tummy or made funny faces, Isaiah would not smile or giggle like other children.

"It was heartbreaking, because every parent wants to see normal baby reactions," she said.

Dehncke took Isaiah to the University of Minnesota Masonic Children's Hospital, where they diagnosed developmental delays and a rare condition known as optic nerve hypoplasia, an eye muscle condition that left him partly blind. Doctors warned her that Isaiah might never be able to read, write or comprehend the world around him.

The news came at a painful time. Several months before Isaiah's birth, Dehncke's husband had died unexpectedly, and now Kacey was spending nearly every waking hour and much of the night monitoring Isaiah at her small house in downtown Lowry. Her parents, who live in nearby Alexandria, stopped by to help, but they were long-haul truck drivers and were often gone for weeks at a time.

When Isaiah reached 9 months, Dehncke called Pope County and asked for an assessment. To her shock, county officials determined that Isaiah required no more care than "a typical child," and denied him a waiver.

Stacy Hennen, director of social services for Pope County, declined to comment on Isaiah's case, citing privacy laws. However, she said eligibility for waivers depends on a variety of factors, such as age, that change over time.

"While we use a standardized tool to complete the assessment, those factors are boiled into that assessment," she said.

A year later, Dehncke sought a second evaluation. By this time, Isaiah's vision had improved, but doctors had found he has autism spectrum disorder and developmental delays. He became easily agitated, sometimes banging his head on walls, biting himself and attacking others. Dehncke, a single mom, was exhausted from watching him day and night.

Yet for the second time, Pope County said no.

"I was lonely, tired, and out of options," Dehncke said. "I knew we had to get out."

Through another parent, Dehncke heard that Isaiah would probably qualify for a waiver if she moved to a county in the Twin Cities metro area. Anoka and Dakota counties, in particular, ranked high on many families' lists. It took nearly a year before Dehncke found a landlord on the outskirts of Coon Rapids willing to take a risk on a single mother with no income.

"It was a leap of faith," she says of the move.

The gamble paid off. Within weeks, Anoka County assessors determined that Isaiah qualified for nearly $40,000 in services under one of Minnesota's most common waivers, known as the Community Access for Disability Inclusion (CADI) waiver.

Overnight, Isaiah qualified for regular visits from a team of specialists, including occupational therapists, to learn coping skills and help him control his behaviors. The waiver also reimbursed Dehncke for staying home to care for her son; that gave her a reliable income and removed the stress of finding the right caregiver.

Yet the move came at a heavy cost.

Isaiah used to see his grandparents in Alexandria several times a week. They brought home-cooked dinners and watched Isaiah when Kacey went shopping or spent a rare evening out with friends. Today his grandparents are two hours away, and Isaiah sees them only about once a month.

On a recent visit, Isaiah could barely contain his excitement, sprinting across the living room and diving headlong into the couch. "Hooyah!" he screamed. His grandfather, Dave Baker, hoisted Isaiah toward the ceiling and gazed into his restless blue eyes.

"Are you showing off, Isaiah?" Baker asked as they pressed their noses together. "I sure as heck miss you!''

Dehncke cherishes these visits, which provide a break from the isolation of raising a toddler alone. Finding the right day care for Isaiah has been a challenge, and Dehncke has almost no family or friends nearby to watch him. She has been unable to return to work, go on dates, or even take a walk by herself in the nearby park.

"There are days when I absolutely crave social interaction," Dehncke said as she helped Isaiah build a house of twigs on the grass outside their apartment. "My days are ruled by him."

But already Isaiah is showing progress. With help from therapists, he has learned to recognize dangers that are apparent to others, such as oncoming traffic, and to sit long enough to read children's books. Dehncke plays the role of tireless tutor and cheerleader. "Oh my God, he just used a regular past tense verb!" she yelled during a therapy session one afternoon.

"We're in a much better place,'' Dehncke said as a therapist tutored Isaiah in her living room. "But I wonder now what could have been, had Isaiah had all these supports in place years ago.

"So much precious time was lost."