Duaa Eldeib

They were the pandemic’s perfect victims — but few people took notice

This was first published by ProPublica, a Pulitzer Prize-winning investigative newsroom. Sign up for The Big Story newsletter to receive stories like this one in your inbox.

By the time Cheryl Cosey learned she had COVID-19, she had gone three days without dialysis — a day and a half more than she usually waited between appointments. She worried how much longer she could wait before going without her life-saving treatments would kill her.

The 58-year-old Cosey was a dialysis technician for years before she herself was diagnosed with end-stage renal disease. After that, she usually took a medical transport van to a dialysis facility three days a week. There, she sat with other patients for hours in the same kind of cushioned chairs where she’d prepped her own patients, connected to machines that drew out their blood, filtered it for toxins, then pumped it back into their fatigued bodies.

Her COVID-19 diagnosis in the pandemic’s first weeks, after she’d been turned away from a dialysis facility because of a fever, meant Cosey was battling two potentially fatal diseases. But even she didn’t know how dangerous the novel coronavirus was to her weakened immune system.

Had she realized the risks, she would have had her daughter Shardae Lovelady move in. Just the two of them in Cosey’s red brick home on Chicago’s West Side, looking out at the world through the sliding glass door in the living room, leaving only for her dialysis.

After Cosey’s positive test in April 2020, Lovelady had to take her mother to a facility that treated patients with suspected or confirmed COVID-19. The facility fit her in for one of its last appointments the next day.

At that point, Cosey had gone more than four days without dialysis.

Four hours later, after Cosey completed her treatment, Lovelady returned to the nearly deserted building to bring her mother home, the sun having long disappeared from the sky. Cosey, dressed in a sweater and a green spring jacket, was disoriented, her breathing sporadic.

Alone with her mother on the sidewalk, Lovelady ran inside to ask workers for help getting Cosey out of her wheelchair and into her car.

“They offered no assistance,” Lovelady said. “They treated her as though she was an infection.”

(A spokesperson for the facility said employees aren’t allowed to help patients once they leave, for safety reasons.)

As Lovelady waited for paramedics to arrive, she grabbed a blanket from her car to wrap around her mother.

“My mother has COVID. I know she has COVID, but I didn’t care,” Lovelady said. “I hugged her and just held on until the ambulance came.”

Then she followed the flashing lights to the hospital.

In the three decades before the pandemic, the number of Americans with end-stage renal disease had more than quadrupled, from about 180,000 in 1990 to about 810,000 in 2019, according to the United States Renal Data System, a national data registry. About 70% of these patients relied on dialysis in 2019; the other 30% received kidney transplants.

The Midwest stood out as the region with the highest rate of patients with the disease, and Illinois had the nation’s third highest prevalence after Washington, D.C., and South Dakota, according to the Centers for Disease Control and Prevention.

A rare bright spot was the downturn in the death rate. Although diagnoses have been going up, death rates for patients who are on dialysis have declined since the early 2000s.

Then COVID-19 struck. Nearly 18,000 more dialysis patients died in 2020 than would have been expected based on previous years. That staggering toll represents an increase of nearly 20% from 2019, when more than 96,000 patients on dialysis died, according to federal data released this month.

The loss led to an unprecedented outcome: The nation’s dialysis population shrank, the first decline since the U.S. began keeping detailed numbers nearly a half century ago.

They were COVID-19’s perfect victims.

“It can’t help but feel like a massive failure when we have such a catastrophic loss of patients,” said Dr. Michael Heung, a clinical professor of nephrology at the University of Michigan. “It speaks to just how bad this pandemic has been and how bad this disease is.”

Before most patients reach advanced kidney failure, they are diagnosed with diabetes, hypertension or a host of other underlying conditions. Their immune systems are severely compromised, meaning they are essentially powerless to survive the most dangerous infections.

Many are old and poor. They also are disproportionately Black, as was Cosey. A 2017 study called end-stage renal disease “one of the starkest examples of racial/ethnic disparities in health.” Those inequities carried through to the pandemic. Dialysis patients who were Black or Latino, according to federal data, suffered higher rates of COVID-19 by every metric: infection, hospitalization, death.

Their deaths went largely unnoticed.

To get their treatments, the majority of dialysis patients in the U.S. must leave the relative safety of their homes and travel to a facility, often with strangers on public or medical transportation. Once at the dialysis center, they typically gather together in a large room for three to four hours.

The fear of contracting the virus was enough to keep many from venturing out for medical care, including those already on dialysis and those set to get the treatment for the first time. Exactly how long patients can go without dialysis depends on a number of factors, but doctors generally begin to worry if they miss two of their thrice-weekly sessions.

Dr. Kirsten Johansen, director of the United States Renal Data System, said the rates of people starting dialysis had been relatively stable until the pandemic. “Then the floor fell out,” she said in an interview.

COVID-19’s collateral damage played out in other ways as well. It meant that people delayed going to the hospital for everything from heart disease to cancer. For dialysis patients, whose life expectancy in some cases is three decades shorter than the general population, the results were calamitous. Hospitalizations of dialysis patients for reasons unrelated to COVID-19 dropped 33% between late March and April of 2020, federal data shows.

Dr. Delphine Tuot, a nephrologist and associate professor at University of California San Francisco and Zuckerberg San Francisco General Hospital and Trauma Center who focuses on vulnerable populations, found herself pleading with some of her patients to come in for their regular dialysis appointments.

One of them was a 60-year-old man whose shortness of breath landed him in the hospital in February. Doctors scheduled dialysis three times a week, and though he was initially resistant, Tuot said, he came around once he realized he would die without it.

Still, he missed appointments. When Tuot followed up, he told her he was afraid to leave the house because he was caring for his wife who had cancer, and he didn’t want to contract COVID and bring it home to her. Soon a cycle began. He skipped treatments, fluid built up in his body and an ambulance rushed him to the hospital because he couldn’t breathe. He got dialysis, was sent home and got back on track.

When cases surged and the delta variant took hold this summer, the cycle restarted — until he skipped dialysis for three weeks in a row, so long that his heart couldn’t recover, according to Tuot. He died last month.

Despite early efforts to mask and isolate patients at dialysis facilities, one study found the rate of COVID-19 hospitalizations of dialysis patients from March to April 2020 was 40 times higher than the general population.

Even with skyrocketing hospitalizations, it took three months after vaccines were approved before federal officials provided vaccinations to dialysis clinics, despite advocacy groups urging that this high-risk population be prioritized.

Although dialysis centers were swift to implement safety protocols in the pandemic’s early days, some facilities didn’t follow their own infection control policies, including washing hands properly, keeping workers home when sick or disinfecting equipment, federal inspection records show.

And home dialysis, which has been shown to be safer for patients during the pandemic, is out of reach for many, especially Black and Latino patients. Nephrologists had pushed for greater access to home dialysis before the pandemic; that need is more apparent now than ever, Tuot said.

“The fact that individuals had to go to a center with other individuals who are equally immunocompromised and had to get to that center, whether that was by public transportation or by van transportation, it’s clearly additional risks,” Tuot said. “Bottom line, they are very vulnerable. They’re very sick.”

The ambulance took Cosey to Chicago’s Rush University Medical Center. Lovelady filled in the staff on her mother’s medical history of end-stage renal disease, high blood pressure and asthma. The next day, Cosey called her daughter from her hospital bed. Lovelady noticed marked improvement from the night before.

“She sounded like herself,” Lovelady said. “We joked around a little bit. I asked her what kind of medicine she was on. She said they started her on dialysis.”

One by one, Lovelady added her sister, cousin and brother to the call. They told Cosey she had scared them, but now that she was doing better, they teased that they needed her to come home to bake her famous cheesecake. Her grandchildren hadn’t stopped asking about her either. They missed movie nights at Cosey’s house, when she made them popcorn and covered the floor with blankets.

Cosey’s boisterous laugh reassured them.

When Lovelady sensed her mother tiring, she told her she’d call her back the next day.

“Go ahead and get some rest,” she said.

While the arrival of the pandemic rocked the health care system as a whole, the effect on dialysis facilities has received little attention.

The Centers for Medicare & Medicaid Services typically monitor the facilities through routine inspections and surprise visits to investigate specific complaints. But federal officials are two years overdue on more than 5,000 inspections at dialysis facilities across the country, Medicare data shows, and three years behind on more than 3,000 of them. Since the start of 2020, the number of inspections to dialysis facilities by government officials fell by more than 30% from the previous two years, ProPublica found. Complaints made up a larger portion of investigations. In 2019, 35% of total visits were in response to complaints. Last year, it jumped to 51%.

A spokesperson for the Centers for Medicare & Medicaid Services said in a statement that the pandemic forced the agency to temporarily suspend or delay inspections for non-urgent complaints and routine inspections to focus on infection control and critical concerns that placed patients in immediate jeopardy. The agency is working with states, which act on behalf of federal officials, to address the resulting backlog, the spokesperson said, but “nearly all state agencies report insufficient resources to complete the required, ongoing federal workload.”

The spokesperson said “the COVID-19 pandemic has presented a unique challenge unlike any other in history and has impacted our routine oversight work,” adding that “complaint investigations remain our first priority to ensure we address the immediate needs of patients receiving care in dialysis facilities.”

Insufficient funding has compounded those challenges. The budget for inspections has “been flatlined” since fiscal year 2015, while the number of dialysis facilities has increased by 21% to nearly 8,000 today, according to the agency. After several years of requesting more money, the centers were approved to receive an increase for fiscal year 2022.

When investigators did inspect dialysis facilities, they found some violations specific to COVID-19 and others that involved general safety lapses, according to federal records from March 2020 to July 2021.

A dialysis patient who started treatment just before the pandemic died after a nurse at a Kentucky facility failed to properly dilute an antibiotic, according to inspection reports. Minutes after the medicine began dripping through an IV, the patient said: “My body is on fire! It’s going through my whole body,” records show.

At a New York facility, another patient died after losing more than 1 1/2 pints of blood when their catheter became disconnected, according to federal records. That same facility underreported its number of deaths in the first 11 months of the pandemic by 16 people.

Federal officials issued their most serious citation to an Indiana facility for refusing to provide dialysis to a patient suspected of having COVID-19. The patient’s previous dialysis had also been cut short because their assisted living facility did not provide them transportation after 9:15 p.m. So they did not receive a complete treatment.

An estimated 5% to 10% of end-stage renal patients live in congregate settings, such as nursing homes or assisted living facilities. The same factors that led to nursing home populations being decimated — age, health, difficulty isolating — applied to those dialysis patients. In the first months of the pandemic, they contracted the virus at a rate more than 17 times higher than those who lived independently, according to one study.

Workers at those facilities weren’t immune either. Oluwayemisi Ogunnubi, 59, worked as a nurse administering dialysis to patients inside a nursing home on Chicago’s South Side. A Nigerian immigrant, she had sent money home to pay for her children’s schooling until she was able to bring them to the U.S. Her smile and supportive nature made her popular among her coworkers, according to an official at Concerto Renal Services, the dialysis company where she worked.

On April 21, 2020, Ogunnubi’s body began to ache, and she was sent home early from work. She was later taken to a hospital, where she tested positive for COVID-19. She died three days later, federal and county records show.

Occupational Safety and Health Administration officials cited Concerto, and levied a penalty of $12,145. The company provided employees who performed dialysis on patients with N95 respirators, but investigators found that Concerto’s written procedures weren’t complete and that the company had failed to provide medical evaluations that ensured employees knew how to use the respirators.

Two other Concerto employees, including one who fell ill the same day as Ogunnubi, contracted COVID-19 at the time but survived. Within two weeks of Ogunnubi’s death, 10 residents at the nursing home died of complications related to COVID-19, according to Cook County Medical Examiner records. Half had kidney failure.

Kyle Stone, Concerto’s executive vice president and general counsel, said the first and only COVID-related death of an employee shook the company. Stone said Concerto “made a difficult choice” to use respirator masks without providing medical evaluations to employees, but it “was clearly the correct choice under the circumstances.”

If Concerto had been required to fulfill every aspect of OSHA requirements for a written policy that early in the pandemic, he said, the company would not have been able to provide the respirator masks, “almost certainly resulting in greater risk of harm and death.”

OSHA’s failure to “see and appreciate” the trying circumstances at the time, Stone said, was “baffling and disappointing.” Concerto eventually settled with OSHA, which downgraded the violation and reduced the penalty to $9,000.

“We are quite proud of our work in 2020 during the eye of the COVID storm,” Stone said.

As devastating as the pandemic has been, many experts say it could have been worse. Dr. Alan Kliger, a clinical professor of medicine at Yale School of Medicine, co-chaired the American Society of Nephrology COVID-19 Response Team that held weekly calls with chief medical officers from 30 or so dialysis companies, including the largest two, DaVita and Fresenius. The facilities, Kliger said, implemented universal masking and patient screenings before the CDC recommended them. They also treated COVID-19 patients in separate shifts or at specifically designated isolation clinics.

“There’s been a tremendous amount of collaboration and sharing of information and uptake of best practices in this group of competitive companies,” Kliger said. “They really rallied together to protect patients.”

Epidemiologist Eric Weinhandl said that there’s another battle on the horizon with the omicron variant spreading rapidly, which he finds especially worrisome given how federal officials failed by not distributing vaccines to dialysis facilities in December 2020.

“It’s heartbreaking because you look at this, and much like nursing home residents, these patients are completely vulnerable. But they still have to go to a dialysis facility three times a week,” Weinhandl said. “Why wouldn’t you prioritize this population?”

The CDC said in a statement that “demand exceeded supply” when vaccines were first authorized and “as supply increased and states adopted CDC’s recommendations, older adults and those with underlying health conditions began being prioritized.”

It wasn’t until March 25 that the Biden administration announced it was partnering with dialysis facilities to send vaccines to patients at the centers.

Now, Weinhandl wonders if dialysis patients will be a priority if the federal government approves a second round of boosters for high-risk patients.

“Is there a plan? Because I think that there should be,” he said. “I think this is getting pretty predictable. Every time COVID surges, you see the dialysis population’s excess mortality surge with it.”

Sometimes the frailty of dialysis patients is no match for COVID-19’s brutality.

Oscar and Donna Perez were the kind of siblings who loved each other without judgment or condition. After Oscar began dialysis in 2018, Donna picked him up from his appointments three nights a week. She cut his toenails when his feet were too swollen for him to reach and massaged them when the pain woke him up at night.

He was her son’s godfather, her best friend who shared his love of music with her — especially the 1960s R&B singer Billy Stewart — and annoyed her in the way only brothers can, swatting her feet off chairs just as she got comfortable and pestering her with questions when she was deep into Instagram.

But Oscar Perez was sick. In addition to his failing kidneys, the 38-year-old Latino father struggled with hypertension, diabetes and congestive heart failure. In early January, doctors performed coronary bypass surgery. He was not yet eligible for the vaccine, but the hospital tested him for COVID-19 when he was admitted. He was negative.

He went home on Jan. 18, the same day as the wake for his uncle, who, his family said, died after he missed too many dialysis appointments. But the next day, Oscar collapsed at home, confused and mumbling in pain, with signs that the coronavirus was flourishing in his lungs. He was rushed back to the hospital. A doctor called to tell Donna Perez that her brother had tested positive and needed to be intubated.

On Jan. 31, doctors called Donna again and told her that her brother’s condition was declining fast. She picked up her parents, another brother and his girlfriend, and headed to the hospital to visit Oscar from outside the glass door of his room. They told doctors to try to resuscitate him if his heart stopped.

That night, after they returned home, Donna Perez’s phone rang one more time. Oscar’s doctor said he probably wasn’t going to make it through the night. This time, they could visit him in his hospital room in PPE.

Seeing her brother up close, swollen and helpless, she leaned in, hugged him, and said, “I can tell you’re tired. You can go.” Donna promised to take care of his daughter.

Her family pushed back and said she had to tell him to be strong.

Donna told them they needed to let Oscar go. He died a few hours later.

“This disaster is one that befalls dialysis patients, with diabetes especially, regularly,” Dr. David Goldfarb, clinical director of the nephrology division at NYU Langone Health in New York City, who reviewed Oscar Perez’s medical records for ProPublica.

“Of course, it’s possible to do better,” he continued. “Given his age, it’s really tragic.”

The advent of technology to filter a patient’s blood revolutionized kidney care in the 1950s, and people lined up to get access to the limited number of machines. In 1960, one hospital created its own admissions panel, later nicknamed the “God committee,” to review cases to decide who would receive the groundbreaking treatment.

Twelve years later, Congress approved legislation that created the Medicare End Stage Renal Disease program, which guaranteed coverage of medical care, including dialysis and kidney transplants. It remains the only disease-specific Medicare entitlement program, credited by some as possibly saving more lives than any other federal government program. Generally, Medicare only covers those over age 65 and the disabled, but this program is available to people of all ages with end-stage renal disease.

Total Medicare-related spending in 2019 on end-stage renal disease patients topped $50 billion. Even with that budget, the agency hasn’t been able to fix persistent health disparities. That year, Black patients were more than four times more likely than their white counterparts to have the disease.

Black patients also progressed from chronic kidney disease to end-stage renal disease three times as often as white patients. Yet they are less likely to start off their dialysis treatments on a waiting list for a transplant — or eventually receive one from a living donor — than white patients.

In a statement, Medicare said it is working to address the disparities and said it is “committed to ensuring the health and safety” of all its dialysis patients.

Another area of concern is home dialysis, which research has shown is cheaper than in-center dialysis and offers similar or better survival rates, enhanced quality of life and greater flexibility. Barriers to home dialysis affect all patients, but the percentages of Black and Hispanic patients receiving home dialysis in 2019 were 10% and 11% respectively, compared with white and Asian patients at 17% each.

The push for closing that gap has gained traction, bolstered by federal data that found COVID-19 hospitalizations rates of patients who underwent home dialysis from late March to June 2020 were between one-quarter and one-third those of patients traveling to dialysis facilities.

“We do have to figure out a way to do better because we’re really, in essence, causing harm, when we’re not able to divert proper resources to patients who most require them,” said Dr. Kirk Campbell, a nephrology professor and vice chair of medicine for diversity, equity and inclusion at the Icahn School of Medicine at Mount Sinai in New York City.

Some patients don’t have the space to store the supplies needed for home dialysis. Others are overwhelmed by the prospect of having to keep the area around the catheter clean to prevent infection. But, Campbell said, that’s where patient education comes in. The most common type of home dialysis, called peritoneal dialysis, often is done at night while the patient is sleeping and does not involve blood flowing outside the body.

While home dialysis isn’t possible for all patients, some doctors are hesitant to recommend it at all, in part because the clinicians lack the training, experience or a certain comfort level with it. That’s especially true, Campbell said, for patients of color and those from disadvantaged backgrounds. There’s often an unconscious bias that those patients won’t be able to handle it, he said.

Campbell and others said it’s critical that clinicians receive additional training in home dialysis. He leads one of the few nephrology fellowship programs in the country where doctors can spend an extra year specializing in home dialysis. The results have been so promising, he said, that they hope to expand.

In July 2019, the Trump administration issued an executive order aimed at revamping kidney care in the United States through the Department of Health and Human Services’ Advancing American Kidney Health initiative. The goals of the initiative were lofty — some say unrealistic — and included having 80% of new end-stage renal disease patients in the U.S. receive in-home dialysis or transplants by 2025. In 1972, the year the Medicare program passed, 40% of patients were on home dialysis. Currently, about 13% of patients are receiving dialysis at home.

Starting January, the Centers for Medicare & Medicaid Services will offer facilities greater reimbursement for improving their home dialysis rates for low-income patients.

Some observers say the change doesn’t go far enough. In September, U.S. Rep. Bobby Rush, an Illinois Democrat, and Rep. Jason Smith, a Republican from Missouri, proposed legislation that would require Medicare to pay for workers to assist patients who need additional help with home dialysis. The measure, which was introduced without much fanfare, also calls for greater patient education around the treatment and a federal study analyzing racial disparities.

Hong Kong, where about three in four patients are on peritoneal dialysis, is a global leader in home treatment. Patients there receive peritoneal dialysis first unless there is a medical reason that would preclude it.

Dr. Isaac Teitelbaum, a nephrologist who has been the medical director of the home dialysis unit at the University of Colorado School of Medicine since 1986, said expanded training for clinicians and incentives for patients, including a reduced co-pay or a tax credit, could encourage more patients to dialyze at home.

“You don’t live just so you can do dialysis. You do dialysis so that you can enjoy life,” he said. “You do dialysis so that you can watch your children and grandchildren grow up and so that you can participate in family events and go on vacations.”

Cheryl Cosey was not offered home dialysis, her family said. Shardae Lovelady said it might have made all the difference for her mother.

Cosey’s health deteriorated quickly after the call from her hospital bed. Doctors transferred Cosey to the intensive care unit, put her on a ventilator and gave her medication to push the oxygen from her lungs into her bloodstream, according to hospital records.

The family braced themselves. Lovelady drove to Minnesota to pick up her sister. She gathered everyone for a big dinner the way her mother used to do.

Lovelady and her sister stayed up late talking, finally dozing off when the house quieted.

When the phone rang at three in the morning, Lovelady recognized the hospital’s 312 area code.

Everything she had done to prepare for that moment suddenly vanished, and she allowed herself to hope.

The call was short. She never even flipped on the bedroom light. She turned to her sister, who was asleep next to her, and nudged her awake.

“Mama gone.”

Why judges are locking up kids who haven't even committed crimes

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In Michigan, judges have sent children to locked detention centers for refusing to take medication or failing to attend online class. For testing positive for using marijuana. For repeatedly disobeying their parents.

Even as other states move toward reforms focused on keeping nonviolent juvenile offenders in the community, Michigan continues to lock up children for minor transgressions that aren't actually crimes: technical violations of probation or status offenses like truancy or staying out after curfew.

A dramatic example of this occurred last summer, when the case of Grace* provoked national outrage. A 15-year-old from suburban Detroit, Grace was sent to detention for violating her probation on earlier charges of theft and assault by failing to do her online schoolwork. Her situation was unusual. She was incarcerated for breaking a single rule of her probation during a pandemic, even as her school district said it wouldn't penalize students and the governor had ordered that residential placement be restricted to children who posed a safety risk. Less than three weeks after ProPublica published the first story about her case, the Michigan Court of Appeals ordered her immediate release.

But while Grace's case may have been extreme, it reflects a practice that is common and emblematic of Michigan's archaic and fragmented juvenile justice system, a ProPublica investigation has found.

Michigan keeps such poor data that the state can't even say how many juveniles it has in custody at any given time or what crimes they committed. But a ProPublica analysis of the federal government's most recent estimate, which used data collected on a single day in 2017, shows that about 30% of the youth confined to detention and residential facilities in Michigan were there for noncriminal offenses, compared with 17% for the country overall.

It can be hard to compare different states with precision because facilities self-report figures and the data varies by state, though experts agree the federal census is the best available measure. The analysis found that Michigan ranked fourth in the nation, trailing only the much more populous states of California, Texas and Florida in the number of minors held for technical violations, and that Michigan's rate was more than twice the national rate.

Michigan also locked up more children for status offenses than all but three states. Children of color, like Grace, were disproportionately involved at nearly every point in the juvenile justice system.

“Michigan is completely out of line with the rest of the country," said Joshua Rovner, a senior advocacy associate at The Sentencing Project, a nonprofit focused on criminal justice reform around the country. “That is a policy choice."

“The whole point of Grace's story is not that this just happened to Grace," he said. “There are hundreds of kids every year who are put in these facilities."

To examine Michigan's juvenile justice system, ProPublica talked with more than 80 lawyers, government and court officials, experts and young people involved in the system. Reporters reviewed court documents and state records, watched live court hearings broadcast on YouTube and analyzed available state and national data.

The investigation revealed a juvenile justice system lacking statewide coordination or authority. A decentralized structure allows counties to act with little oversight, and the state gathers almost no data from those jurisdictions, so it doesn't know what happens to the juveniles in them. The state's program, tucked inside the massive Department of Health and Human Services, struggles to manage and fund efforts among courts and governments across 83 counties. Because each local authority largely takes its own approach to juvenile justice, children's treatment varies widely depending upon where they live.

The state Supreme Court, which has the power to require county courts to standardize and report data, has not done so. And lawmakers, focused on problems in the state's child welfare and adult criminal justice systems, have failed to prioritize juvenile justice measures.

Michigan Supreme Court Justice Elizabeth Clement said leaders from the executive, legislative and judicial branches must work together to set new policies and pass legislation to reform the juvenile justice system.

“If it's not a priority from the top down, you're going to have the status quo. It'll be easy for everyone involved to say, 'Well, no one is going to hold anybody accountable,'" Clement said.

Michigan appears to be taking the first halting steps toward reform, recently becoming the 47th state to ban automatically charging 17-year-olds as adults. But experts and advocates say there is still much to do.

“Much of the world has moved on, but much of our system remains stuck in the mentality that has really gone by the wayside, that no academic, that no policymaker really still believes in," said Frank Vandervort, a professor who teaches and supervises at the University of Michigan Law School's Juvenile Justice Clinic. “We have too many kids in placement. We do not have enough community-based resources. In many ways, we are two or three decades behind what is thought of in contemporary times as best practice in juvenile justice."

During one virtual court hearing this month, the 16-year-old on the video screen sat in his kitchen, arms crossed, facing Judge Kathleen Feeney for a probation progress hearing. He hadn't been arrested on any new crimes since his original charge of assault, but he was skipping online school, smoking marijuana and disobeying his mother, his probation officer told the judge.

Feeney told the teen he could remain at home, but only if he followed all of her orders, including taking a new medication for mental health issues. He agreed, but when Feeney ordered him to swallow the pill during the hearing, he threw it on the floor.

“You can't order me to take something I don't need," he told the judge.

“Yeah, I can, otherwise you are going to get picked up. And you do need it," she said.

When he repeatedly refused to take the pill, Feeney found him in contempt of court. She said the teen posed a risk to himself if he didn't take the medication and instructed that he be detained. She later said detention was the quickest way to get him a substance abuse assessment.

Feeney, a Kent County Circuit Court family division judge, said she tailors her probation orders to what she thinks individual children need: Go to school, don't use drugs, take prescribed medication, go to bed at 9 p.m., read a book a week and write an essay about it. She tells them to post the probation orders on their refrigerators so they don't forget what's required of them.

“I tell them if you can't follow these orders, they will be telling me they can't be successful in their mom's home and I will find them a place to live. And I will," Feeney said in an interview. “They need to be watched. They have already proven they make bad choices. Probation is all about helping kids make better choices."

Feeney said if she didn't care about the teenagers who appeared before her, she wouldn't set limitations to help them get on a better path. She said she revokes probation on a case-by-case basis and only when a teenager's behavior and circumstances warrant it.

“I don't know what the alternative approach is," Feeney said. “I am always open to learning new things and figuring out how we can do things better. The things we are asking them to do in the probation orders are the rules of kidhood. ... To me, these are just trying to put down in writing the rules of kidhood that every kid should follow."

About 4,500 Michigan youth ages 10 to 16 were placed on probation in fiscal year 2018, according to the latest state figures. That data doesn't include individual offenses, but charges can include assault, robbery and weapons offenses. On probation, juvenile offenders typically live at home as long as they follow the rules a judge sets for them.

Those rules, though, can create unreasonable expectations for behavior by teenagers, some experts say. If they weren't in the juvenile justice system, their misdeeds could lead to a grounding or loss of privileges, not time in detention.

“Instead of helping kids do right, it is catching them do wrong," said Nate Balis, director of the Juvenile Justice Strategy Group at the nonprofit Annie E. Casey Foundation. “No young person is going to follow the rules all the time."

Driven by legislative and policy reforms, many states across the country have moved away from detaining young people for probation violations, data shows. In 2017, the National Council of Juvenile and Family Court Judges called for judges to ensure that teenagers who violate probation are not incarcerated. The group urged courts to use incentives and individualized case plans to manage juvenile offenders rather than issuing a litany of rules.

Recent legislation in Colorado limits the use of detention for juveniles, requiring an assessment of a youth's risks and needs before deciding whether a placement outside the home is necessary.

Kansas, Georgia, Hawaii, Kentucky, South Dakota, Utah and West Virginia have all adopted policies or enacted laws in recent years to reduce out-of-home placement for juvenile offenders, particularly those with minor offenses, according to the Pew Charitable Trusts, which has funded many of the initiatives.

But Michigan moved in the opposite direction. The one-day census, conducted by the federal Office of Juvenile Justice and Delinquency Prevention in October 2017, found 210 juveniles were confined for technical violations, compared with 144 during the first count in 1997. Illinois, by contrast, had reduced that population from 396 to 9 in the same time period.

Jason Smith, of the nonprofit Michigan Center for Youth Justice and a leading voice for reform, said the state should have a better understanding of the youth in its system. But even the limited data shows that Michigan confines too many young people for noncriminal offenses, he said. Doing so, “increasingly disconnects them from their families, schools and communities, and places them at risk of physical harm simply by being in a confined setting," Smith said.

As in most of Michigan's juvenile justice system, children of color are disproportionately affected. About 25% of the state's youth placed on probation in fiscal year 2018 were Black, even though they make up 17% of the state's population under 17, according to state data.

In Saginaw County, an area northwest of Flint near Lake Huron, children of color make up less than 40% of the county's juvenile population but accounted for more than 60% of those involved with the juvenile justice system.

Patrick Greenfelder, an attorney who defends juveniles in Saginaw County, said nearly all his probation violation cases end up with the young person in detention. Last Tuesday, three of Greenfelder's clients had hearings for probation violations. All were Black, and all risked incarceration for the same reason: not logging on to online classes. They faced more than a month in detention.

One teenager had missed a month of classes and several counseling sessions. A second didn't have a working laptop, and his mother said they didn't have WiFi for a few weeks because she had to pay for food and rent.

The third, a 16-year-old named Michael, was released from detention in October following charges for possession of a stolen vehicle, reckless discharge of a firearm and trying to escape from the courthouse.

He had been following the rules of his probation, but when Michael's school switched to remote learning, he began “spiraling downward," wrote his probation officer, John Meyette. Michael wasn't logging on regularly. When he did, it was only for short periods of time.

“I know he is not understanding the material and that is why he is not working," one of his teachers wrote in an academic report included in court records.

The probation officer's decision to recommend detention baffled his mother, Nicole. Michael had struggled with ADHD and anger issues since he was a child, she said, but until the pandemic, had managed with the help of medication and one-on-one support in his special education classes.

“Knowing his school history, knowing he needs extra help, you're still going to lock up my son?" she said in an interview. “He never committed another crime. I just don't think that's fair."

After about four months in detention, Michael himself said he didn't want to go back. “It ain't no place for me," he said in an interview.

Meyette, who declined comment for this story, argued for detention, in part because teenagers can't skip classes while locked up. But last Tuesday, Saginaw County Judge Barbara Meter made a decision that surprised the defense attorney. She said she didn't want to house young people in detention during a pandemic for missing school. She dismissed all three cases.

The probation officer seemed to anticipate the outcome by the time the third case came up. He told the prosecutor, “If it doesn't go the way we want it to, then at least we're making them sweat."

The 2017 federal data showed that in Michigan, one offense had sent children to institutions more often than robbery or theft or drug charges: “incorrigibility."

The term generally refers to a child who repeatedly defies a parent or guardian. That can include leaving home without permission, using abusive language or spending time with “undesirable people." Incorrigibility, like truancy or running away, is a status offense, deemed a violation of the law only because it is committed by a minor.

According to the 2017 federal data, Michigan held more young people for status offenses than 46 other states. Nearly half of those juveniles were Black and the majority were female.

“That is how girls come into the justice system in Michigan," said Terri Gilbert, a former supervisor for juvenile justice programming in Michigan and advocate for reform. “We would be much better off seeking services in community-based behavioral health or family support programs than criminalizing this behavior. It is not OK to treat kids like criminals when they do things like this."

Federal law prohibits detaining juveniles for status offenses unless they violate a direct order from a judge, such as a requirement to go to school regularly or obey their parents. The measure is intended to protect children from being easily detained for minor infractions. But Michigan judges issue so many court orders that the federal law is almost meaningless.

About half of the states did not use court orders to lock up juveniles for status offenses in fiscal year 2016, the most recent year for which data was available. Michigan used court orders to do so 630 times, more than all but two states that year, according to data reported to the federal government. The state that had most frequently used court orders, Washington, has since outlawed the practice.

The Michigan Legislature last week passed legislation that would limit to seven days the length of time youth can be detained for a status offense, which would bring the state into compliance with federal requirements enacted in 2018.

Sen. Sylvia Santana, who sponsored the legislation, said she hopes it's the beginning of efforts to reform the state's juvenile justice system.

“We have a lot of things to fix," she said. “I hope we are on the right path."

In 1996, when Michigan Gov. John Engler pushed to build a “punk prison" for teenage criminals and boasted that the state had one of the country's toughest juvenile justice systems, his line of thinking was common. Fear of a purported wave of remorseless juvenile delinquents known as “superpredators" was sweeping the country, prompting lawmakers to pass stiffer penalties for young offenders.

Under Engler's administration, Michigan lowered the age at which children could be tried as adults to 14, although some could be younger, and instituted more punitive juvenile sentencing provisions, among other measures.

“We made kids the boogeyman," said Charley Clapp, an attorney in Grand Rapids who has tried juvenile court cases for more than 30 years. “We treated kids harsher. Rather than looking at them as human beings, we just wanted to be tough on kids. I don't think we ever recovered."

Ingham County Prosecutor Carol Siemon said that when she was an assistant prosecutor in the 1980s and 1990s, she did not usually oppose probation officers' recommendations to detain minors for noncriminal offenses. Her own outlook has changed, but many prosecutors and judges in Michigan continue to view juvenile justice in a punitive way, she said.

“If it is your local culture, you don't always think to question it," said Siemon, now considered one of the state's progressive prosecutors. “That still lingers in the system."

While most other states ultimately moved toward a more reform-centered model, Michigan has been slow to reevaluate its approach. Two primary barriers stand in the way: the decentralized system that allows counties to act with little oversight and the lack of data to drive decision-making or reform.

Individual county court systems keep files and some data on their own cases. ProPublica requested data related to the incarceration of juveniles for noncriminal offenses from more than a dozen counties; none provided the information and some said they would have to search paper case files to gather it.

The Michigan Supreme Court could require county court systems to track the information and provide it to the state, but doesn't.

“Could we do a better job? Absolutely," said John Nevin, the court's spokesman, who added that the Legislature would need to allocate funding as it has done for other data efforts.

Officials from the Michigan Department of Health and Human Services, which administers the juvenile justice system, also acknowledged the state's deficiencies in data collection and analysis. Without a standalone juvenile justice department, the state's responsibilities are limited and scattered across the agency. It inspects child welfare facilities, including residential treatment and detention centers, for compliance with licensing rules and laws. Its Child Care Fund Unit reimburses counties half the cost of eligible placements and services for those involved with juvenile court. The state directly oversees only a small percentage of delinquency cases; the majority fall within the jurisdiction of the courts.

“The juvenile justice work happens locally in each court, and they have their individual data they collect but it is not shared statewide," said Wendy Campau, who oversees juvenile justice programs at the agency. “It doesn't allow us to make informed decisions in terms of strategies that could improve the experience of youth and families."

Michigan has pledged for years to improve its collection of juvenile justice data but hasn't. State officials and court administrators gathered at a “Datapalooza" conference eight years ago to discuss the urgent need. Two years later, they detailed exactly what data should be collected, but have made little progress since.

Atasi Uppal, a senior policy attorney at the California-based nonprofit National Center for Youth Law who has worked in juvenile justice systems across the country, said the shortcomings in Michigan's data are among the worst she has encountered.

“In Michigan, people are quick to blame decentralization but slow to take charge of coming up with a solution," Uppal said.

A number of states not only gather the information but make it available to the public. Florida publishes an interactive tool that provides data on juveniles in the system while other states, including Maryland, publish annual data reports. In Indiana, which is decentralized like Michigan, a juvenile justice reform task force appointed this year aims to collect and assess data from across the state.

Michigan last published an annual report on juvenile justice in 2015, and it focused only on juvenile arrests through 2013.

The state of juvenile justice data in Michigan has some experts questioning whether it is by design.

“You cannot be this far behind in the data without an intent to do that," Vandervort, the Michigan law professor, said. “It's not an inadvertent error. This is intentional. I don't think they want to understand how bad it is."

Because there is little state oversight, young people may have very different experiences of the juvenile justice system depending upon where they live. Advocates have dubbed it “justice by geography."

Grace, in Oakland County, was sent to detention just two weeks after being placed on probation, for her first violation. Probation officers and judges in other counties — and even other courtrooms — may offer teenagers multiple chances before ordering detention, or not use detention at all for some offenses.

Mental health treatment and other services also vary widely by region; some judges say they have to send young people to detention because that's the quickest way they can get a psychiatric evaluation. Attorneys say their clients would be better treated for their mental health issues in the community but get locked up because there's nowhere for them to go.

In other states with decentralized justice systems, state lawmakers have stepped in to mandate consistent policies, such as standardized assessments to match youth with the most appropriate level of supervision, said Josh Weber, who directs the Council of State Governments' juvenile justice program. Michigan has no such assessment tool.

In states like Illinois, which has revamped its juvenile justice department over the last decade, data has been key, but so has jurisdiction, oversight and advocacy. The Illinois Department of Juvenile Justice sets state standards for detention and receives reports on all youth in detention, even those not directly in state care.

For decades, juvenile justice fell under the Illinois Department of Corrections, but breaking off as a standalone agency in 2006 helped usher in a new era, said Heidi Mueller, director of the state's Department of Juvenile Justice.

“In Illinois, without a doubt, removing DJJ out from under adult corrections was critical to the department being able to change policies and practices and move toward a lot of reform," she said. “I do think if we had remained under Department of Corrections, the process would be much, much more slow-going, and we would be handcuffed."

Michigan has an Office of Children's Ombudsman, which handles complaints related to child welfare and juvenile justice, but it does not have oversight over most delinquency cases because they are supervised by the courts.

Of the 1,169 complaints the office received in fiscal year 2019, none was related to juvenile justice, records show. During this most recent fiscal year, which ended in September, only four were.

Michigan's ombudsman stands in stark contrast to Illinois, which in 2014 created the Office of the Independent Juvenile Ombudsman. In fiscal year 2018, the office received 1,203 calls from youth and their families and logged 1,000 in-person contacts with youth in custody, state records show. Juveniles locked up at any of Illinois' five state-run facilities can call the ombudsman's office at any hour of the day by dialing a four-digit code. The calls are free and confidential.

Kathleen Bankhead, who was appointed Illinois' first juvenile ombudsman and still serves in that role, said she didn't realize the importance of the office until she began touring the facilities and speaking to the youth.

“It is the bigger systemic things, but it's also the micro things," Bankhead said. “The individual youth that would get lost in the shuffle. Even though it's not perfect, having somebody who knows the kids and knows them by their names, someone that they will trust and reach out to, makes such a difference."

Michigan Gov. Gretchen Whitmer, who took office in January 2019, has made criminal justice reform a priority. But she has so far largely focused on the adult system. A task force studying incarceration found about half of all jail admissions in that system resulted from probation or parole violations, information that helped spur a package of criminal justice reform bills that would, among other changes, limit when jail can be used for adult probation violations. Whitmer's office did not respond to requests for comment.

The largest statewide juvenile justice reform came last year. Michigan became one of the last states to pass legislation to ban automatically charging 17-year-olds as adults, a practice that began more than 100 years ago. The change, which goes into effect in October 2021, took years to accomplish in part because the state didn't have the data to understand how many youth would be affected. Last week, state lawmakers approved a measure that would automatically expunge certain offenses from a juvenile's record, a move they already had approved for adults.

The Michigan Supreme Court took one step toward understanding concerns in the juvenile court system when it commissioned a review of juvenile defense in 2018. The National Juvenile Defender Center report, released this year, found that without state funding or oversight of juvenile defense in Michigan, young people too often have inadequate counsel by court-appointed attorneys. Among other suggestions, the group recommended state monitoring, better training of lawyers, and expanding the State Appellate Defender Office to also take juvenile cases.

Following concern that Grace had been shackled during a court hearing, the state Supreme Court proposed a rule last month that would ban the use of restraints on juveniles during court proceedings unless there is a safety risk.

More than 30 states have limited or prohibited shackling juveniles, according to the nonprofit National Juvenile Defender Center. Most young people are in court on nonviolent offenses, the group and others found, and shackling them often is unnecessary and can exacerbate trauma.

Some counties have attempted to make reforms on their own. Wayne County, the home of Detroit, in 1999 essentially created its own juvenile justice system. One stated goal was to keep more children in their communities and out of facilities. The number of juveniles confined in secure, short-term detention went from an average of 500 a day in 1999 to around 82 in 2019, according to Wayne County officials.

Attorney Jessica Martin has represented young people in Detroit for 13 years. She said juveniles are rarely taken into custody for status offenses and often are given several opportunities before they are placed outside the home for a probation violation — though that still sometimes happens.

Probation officers there go beyond drug screens and attendance checks, she said, and help enroll families in Medicaid, drop off food baskets on Thanksgiving and work with schools to develop specialized education plans for students.

More recently, in Washtenaw County, which includes Ann Arbor, incoming county prosecutor Eli Savit has pledged to rely less on detention. Savit said in an interview that his office won't file cases against juveniles for minor school-based behaviors, marijuana crimes or status offenses.

“You sink your hooks in that kid and any slip up, something not criminal, can warrant really severe consequences," he said.

Since he entered the juvenile court system in June 2018 on a felony weapons charge for bringing a concealed gun to school, Cartez, a Black 17-year-old from Inkster, outside Detroit, hasn't been charged with any more crimes. But he is regularly in trouble with the Wayne County court.

Cartez said probation at first helped him stay out of trouble, and records show he was “progressing on probation appropriately." But he said he soon became overwhelmed with the requirements: to repeatedly check in with his caseworker, get weekly drug screens and charge the electronic monitoring device he wore on his ankle. He was irritated he couldn't leave the house.

Probation, he said in an interview, began to feel like a “set up." He said he felt like he was under constant surveillance.

“They want me to be perfect and nobody is perfect," Cartez said.

Court officials determined he violated probation rules several times last year when he failed to do his virtual schoolwork, left home without permission and admitted to eating marijuana edibles, records show. Authorities didn't see him using marijuana, which would have been illegal.

Even in Wayne County, considered a model of reform, those probation violations landed Cartez in detention and then in a residential facility near Grand Rapids, where he ended up staying for a year. He turned 16 while there.

“No matter what you do, it can be the smallest thing, walking down the street or going to the store at night and the police see you and find out you are on probation, you are going to get locked up," he said. “The system is waiting for you."

His mother, Sharise, said she wished there had been an alternative to detention, particularly because Cartez didn't commit new crimes. “I am all for discipline and I feel like if kids do wrong, they have to pay for their mistakes," she said. “But not so intense."

Home since August, Cartez initially followed the requirements of his probation, his court records show. But on Dec. 3, he appeared for a hearing after his probation officer filed a complaint that said he was not charging the electronic monitoring device and had tested positive for marijuana. The court found Cartez had again violated probation.

His next hearing is set for the first week of January, when the court will decide if the teen should be sent back to detention.

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