High-stakes assessments can upend lives of Minnesota families with disabilities

Delores Flynn's thin hands trembled as she pulled on a pair of sterile surgical gloves. She straddled the bulky frame of her son, Scott, inserted a long plastic tube down his throat and deftly removed the excess fluid blocking his airways.

Flynn and her husband, David, both 74, have performed this complicated choreography thousands of times since Scott, 48, suffered a massive brain hemorrhage in 2001 that left him unable to breathe or move on his own.

Yet on this spring afternoon in Roseville, they carried it out with extra purpose. A Ramsey County employee monitored their every move, peppering them with questions, and they had only a few hours to make the case that the family needed help from the county to care for Scott in their home.

Delores had spent months rehearsing for this moment. "The stress is unbearable," she said, wiping away tears after the exam. "I have no idea how other families deal with it."

Each year, tens of thousands of Minnesotans with disabilities and their families undergo this agonizing, high-stakes ritual, known as a comprehensive needs assessment. A stranger with a laptop comes to their home and asks hundreds of questions about the medical needs and care of their loved ones.

Can your daughter feed herself? Is your son aggressive toward others? Can your father use the toilet alone? What does a "bad day'' look like?

A few careless answers about medications or a forgotten detail about an emergency room visit could spell disaster. It could be the difference between thousands of dollars in help to pay for nursing care, physical therapy and medical equipment — or a life of sleepless nights, hair-raising emergencies and nagging doubts about whether they have done all they can to improve life for someone they love.

These computer-based assessments, devised by state officials nearly a decade ago, were supposed to make it easier for families to apply for a coveted form of Medicaid benefits known as a "waiver.''

State officials also promised that the high-tech assessments would bring objectivity and rigor to a system that distributes more than $3 billion to Minnesota families every year.

Instead, it has been a costly and embarrassing failure.

Families awarded state aid one year see their benefits reduced or denied the next. Families denied benefits in one county will move and be approved for benefits in another. And the people who conduct the interviews — county assessors — change from one year to the next, multiplying the potential for mistakes and misunderstandings in answering complex medical questions.

In 2017, Jackie Langner of Perham, Minn. lost $120,000 in waiver services for her daughter, Leah, even though Leah's paralyzing spinal disorder had not changed.

Kiesha Gilbert of Minneapolis saw caregiver support for her toddler, who has chronic lung disease, slashed from 26 hours a week to three. The cut was based on a single wrong entry on the assessment, which omitted her daughter's need for an oxygen machine. "That one mistake turned my life upside down," Gilbert said.

These arbitrary and unpredictable decisions, made by county officials after the assessments have been performed, are trapping hundreds of families in an endless cycle of denials, appeals and dread.

The number of Minnesota families appealing waiver decisions has risen steadily in the last five years, according to records obtained by the Star Tribune. Last year, special state judges appointed to hear these cases overturned a record 32 % of assessments appealed in the state's most popular waiver program.

Records also show fundamental weaknesses in a linchpin of the new system: the county employees hired to conduct assessments. Documents reviewed by the Star Tribune show that many of them have no medical training or background in social services, even though they are evaluating clients with complex medical needs and daunting domestic challenges.

All told, nearly a quarter of the 2,800 people hired as county assessors have left their positions since the program was launched in 2013. The highest turnover has occurred in counties with the largest number of people receiving waivers. In Hennepin and Ramsey counties, nearly a third of all assessors have left their jobs.

"The burnout level is off the charts," said Margaret Patterson, a nurse and former supervisor with Ramsey County who quit over frustration with the new assessment program.

The problems are so acute that some county social workers and disability advocates now believe the system is beyond repair and are quietly urging the state to return to a simpler, more person-centered approach.

"The state dropped the ball on this program, and they dropped the ball hard," said Rep. Tina Liebling, DFL-Rochester, and chairwoman of the legislative committee that oversees Medicaid. "We need an explanation because people's lives depend on these evaluations."

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Valerie Hale remembers feeling "a sense of devastation and dread" when she opened her mail and discovered that Anoka County had terminated a high-needs waiver for her 7-year-old son, Evander.

The decision meant that Evander would lose home nursing services and other benefits he had been receiving since he was an infant.

"It felt like our future had been ripped away," she said.

The single mother replays the events of the morning last fall when an Anoka County assessor conducted a two-hour evaluation of Evander, who was born with a severe form of cerebral palsy and cannot eat, talk or walk on his own.

Hale wonders: Did she forget to say that Evander has almost no control over his movements, and that his hands and feet bore open wounds from his limbs jerking involuntarily? Did she neglect to mention that Evander has to be repositioned frequently throughout the night because he could choke on his own saliva? Did she forget to describe his life-threatening seizures? Did she seem too cheerful on the day of the assessment?

"It's nothing that Evander did. It's all my fault," added Hale, a former banker and property manager, who looked exhausted after another sleep-deprived night. "Maybe I didn't advocate hard enough for him during that assessment."

Hale can't help but speculate, because she received no official explanation for the decision, which slashed Evander's annual benefits by $100,000.

Suddenly, Hale had to learn to perform dozens of lifesaving procedures by herself, including checking Evander's oxygen levels, suctioning his airways and cleaning out his stoma, a visible opening in his stomach that connects to his feeding tube.

Hale could no longer afford special, in-home physical therapy that would help ease the pain in Evander's spastic muscles. She had to postpone purchases of basic equipment, like a larger wheelchair to fit his growing body.

Many nights, Hale was so exhausted that she would fall asleep on the floor of Evander's room. Even then, she would bolt awake throughout the night to clear out her son's airways.

"I kept wondering, can Evander make it through this? Can I make it through this?" Hale said. "I was scared at the notion of going to sleep because I was afraid he might die."

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For many years, people like Evander Hale were evaluated year after year by the same county social workers or public health nurses. These county professionals came to understand the complicated medical conditions of their clients; they could offer expert advice to the families and recognize if their clients were getting better or worse, say current and former county supervisors.

"There was stability," said Sheana Schlichter, a former assessor from Scott County who now works as a consultant to families on waivers. "It was a lot harder for people to fall through the cracks and lose crucial services when case managers knew their clients and their personal stories."

But in late 2013 the state launched a new web-based survey tool called MnCHOICES. The new computer tool combined evaluations for four separate waiver programs — covering conditions as different as autism, cerebral palsy and schizophrenia — into a single, automated computer tool with more than 800 possible questions.

Hundreds of new county employees replaced veteran social workers as the public face and gatekeepers of the state's Medicaid program. The assessors were trained on conducting interviews using the new digital questionnaire, but many had little or no experience in disability services or health care, and most had no previous contact with the people they interviewed.

"The process became dehumanized," said Patterson, the former supervisor of assessors from Ramsey County. "We became more focused on our computers than on people's needs."

The rollout of MnCHOICES was rocky. The new computer tool crashed regularly and was cumbersome to use. Frustrated assessors began quitting an alarming rate. A Star Tribune analysis of state records found that 23% of all assessors have been in their jobs less than two years. Their average tenure is just three years.

Assessors wield a great deal of influence under the new system. In many counties, including Dakota and Ramsey, assessors issue recommendations to special committees on the kinds of waivers a person should receive once the evaluation is complete.

But the high turnover means that many people are evaluated by a different person each year, creating further anxiety among families.

"A stranger walks through our front door every year," said Delores Flynn. "They don't know Scott and his complex needs, and it just feels like you can lose everything with one wrong answer."

Oftentimes, not even veteran county supervisors can explain how the computer formula for determining eligibility works, and why people with disabilities experience wild swings in funding and services.

"It's remarkable, but these dramatic changes occurred without anyone in state government bothering to ask people with disabilities if this is what they actually wanted," said Barnett Rosenfield, supervising attorney for the Minnesota Disability Law Center.

For many families, the shift was jarring. Jackie Langner of Perham, Minn. had grown accustomed to her 8-year-old daughter, Leah, being evaluated each year by a county nurse. Leah was born with a defect of the spinal vertebra known as spina bifida, which severely limits her mobility. Langner was shocked when a new county assessor insisted on directing medical questions toward Leah, who was too young to articulate answers, she said.

When the assessor asked Leah to rate her health, Leah cheerfully replied, "Good!" even though she had just undergone painful surgery to drain excess fluid in her brain, her mother said.

The assessment led to Leah losing her Medicaid waiver and more than $100,000 in home nursing services — a decision that was later reversed by a state judge after the family appealed.

"You can build the most wonderful computer tool imaginable, but it's only as good as the quality of the person using it," Langner said, as she pushed her daughter around their farm in a wheelchair.

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On a sunny morning in early May, Tiffany Goodchild was busy preparing for the annual MnCHOICES assessment for her 3-year-old son, Karter.

Goodchild, a hard-charging ex-college athlete who once ran a school for special-needs children, was determined to make the assessment go well. She had prepared a comprehensive list of all Karter's health needs and symptoms, including a chart of his many medications. She carefully brushed his wavy curls away from his bright green eyes and sat him upright in his seat wearing his most colorful sweater.

Then, fearing that Karter looked too much like a normal toddler, Goodchild removed the blanket that covered his lap, revealing two legs encased in casts from his waist to his ankles — the result of a recent surgery. She also carefully arranged his dozen medications on the kitchen counter, along with her large arsenal of nursing supplies — syringes, respirators, surgical gloves and feeding tubes — needed to care for Karter in the living room of their home in Hugo.

Karter was born with cerebral palsy so severe that he nearly died. He still cannot eat, talk or clutch a toy on his own. Goodchild wanted to make sure the visiting assessor, whom she had never met, could see firsthand the family's daily struggle to keep him alive.

"This is, by far, the most important two hours of our year," Goodchild said as the hour of the appointment neared. "I can't hold back. I won't hold back."

In the end, Goodchild's careful preparations were in vain. When the assessor arrived, she walked straight to the kitchen counter and unfolded her laptop without acknowledging Karter, who sat less than 10 feet away in the same room.

Toggling between screens on her computer, the assessor proceeded to pepper Goodchild with dozens of predetermined questions from the MnCHOICES application on her laptop.

As the interview wore on, Goodchild became visibly annoyed by a series of queries that seemed irrelevant to Karter's disabilities.

"Does he have any behaviors at all?" the assessor asked.

"What do you mean by behaviors?" Goodchild responded.

"You know, does he act out?" the assessor asked.

"I don't even know how to answer that," Goodchild snapped. "My son is nonverbal. Karter is so severely cognitively affected that I don't think behaviors are an issue."

Eventually, the assessor asked about her hopes and dreams for her son.

"As a mom, I just want [Karter] to be happy, and I want him to be the best version of himself," Goodchild said, her voice shaking and tears welling in her eyes. "Right now, every single thing is so very hard for him."

Once the assessor was out the door, Goodchild's long frustrations boiled over. When Karter was born, he suffered a major brain hemorrhage that deprived his body of blood and oxygen, affecting all his organs. On coming home from the hospital, he could barely swallow or cry, and suffered up to 25 seizures an hour.

Doctors said he would probably not live more than a few weeks.

Grief-stricken and worried, Goodchild and her husband, Cole, had no idea how to respond to their son's medical needs, including his tendency to choke during his sleep. At a stage when many parents look forward to their baby sleeping through the night and learning to crawl, the Goodchilds could only hope that Karter would survive to age 1 and that, perhaps with a part-time nurse, they could get an occasional night's sleep.

"Sometimes, I would close the bathroom door, turn on the shower, and just stand there under the water, crying," Goodchild said.

They decided to apply for waiver funds that might give them respite care or part-time skilled nursing. To the couple's surprise and dismay, Washington County said no. The next year they were denied again.

Desperate, the Goodchilds paid a private nursing firm $270 to conduct their own assessment of Karter, and then submitted the results to the county.

This time, on their third try, he was approved for nursing and other in-home services worth approximately $170,000 a year.

No one at the county explained the sudden reversal, or why Karter was denied a waiver in the first place, Goodchild said.

"It's been completely life-changing and probably the reason that Karter is alive today," Goodchild said as she helped nestle Karter into bed for a nap one afternoon. "But it feels so arbitrary, like it was all a roll of the dice. It doesn't seem like anyone … realizes that people's lives are at stake."

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Even though more and more families are deciding to challenge their county assessments, the vast majority lack the time, money or the legal expertise to do so. Most wait a year for their next assessment, hoping for a different outcome.

This spring, Valerie Hale had another chance to make the case for home nursing services for her son, Evander, when it came time for his annual assessment.

This time, she resolved to leave nothing out. She would talk about her son's muscle pain and frequent seizures; about how difficult it is to hold a feeding tube in place while he kicks and squirms and bites; and about her terror that she would not wake up in time when he choked during the middle of the night. She would even mention the anti-anxiety medications she had started taking to handle the stress of providing round-the-clock nursing care on her own.

On the morning of the evaluation, Hale looked pale and fatigued. She had spent most of the previous night caring for Evander and replaying her talking points in her mind.

When the assessor finally arrived, Hale laid Evander on a blanket on her living room floor, offered the woman a cup of coffee, and immediately launched into her story.

"Thank you for being here," Hale said politely. "I want you to know that sometimes I feel like my son could die at any moment. I feel like Evander is not safe. I feel like I have trauma from that …"

About three hours later, the assessor folded her laptop back into her bag and then calmly informed Hale that Evander qualified for the waiver that he had lost.

As with past decisions, she gave no reasons.

Too shocked to respond, Hale closed the door and then crawled onto the floor next to Evander.

"Got some good news, bud!" Hale said, cuddling next to him. "We've got our lives back."

Chris Serres • 612-673-4308

Glenn Howatt • 612-673-7192