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On June 9, James "Brad" Mayer learned to his dismay that he was going to be moved from the Gresham adult foster home where he lived.
Mayer, then 63, started smashing his left leg into the end of his steel hospital-style bed where he'd lain for 12 years, unable to walk and barely able to speak as a result of traumatic brain injury. He required round-the-clock care, costing the Oregon Health Plan $7,800 a month.
"Brad, what are you doing?" asked Karen Campbell, the owner of the foster home.
"Dying."
"Why?"
"Not moving," he replied.
In other words, Mayer didn't want to leave. Campbell says she urged him to stop hurting himself and placed a protective boot over his ankle and padding on the end of the bed. But Mayer, a big man at 6 feet 4 inches and more than 200 pounds, kept banging his ankle, over and over, creating a giant bluish-purple bruise.
Mayer's sister, Michelle Keyser, says Mayer panicked when he overheard state and county officials telling Campbell they were closing her foster care homes.
"When you are locked inside a body that doesn't work and a brain that is severely injured, any change in routine is going to cause anxiety," she says. "A lot of anxiety."
Mayer's leg grew infected from the banging. He began refusing the nutrition he received through a feeding tube and declining the daily suctioning necessary to keep his lungs clear. Mayer also began hyperventilating, causing him to aspirate fluids and eventually contract pneumonia.
With some difficulty, officials found a new foster home placement for him. But Mayer never made it there. On July 11, Mayer—a lifelong Dodgers fan—watched the Major League Baseball All-Star Game. Shortly after the game ended, Mayer died.
His family fears a similarly bleak fate could await thousands of other aging Oregon baby boomers.
"This isn't about Brad," says Mayer's brother John. "It's about all the other vulnerable people in the state system."
Mayer was one of a large and rapidly growing number of Oregonians who suffer from traumatic brain injury, a condition that experts say is poorly understood and difficult to treat and can require a lifetime of expensive care.
In the past decade, the number of people suffering what researchers call a "silent epidemic" of traumatic brain injury has soared (see sidebar "Battered Brains," below).
Such injuries make up the most extreme cases of declining health in the wave of baby boomers who will require long-term care. Seniors and people with disabilities are the largest and fastest-growing component of the $3.5 billion Oregon Department of Human Services budget.
Oregon pioneered an elegant solution to this demographic crunch: adult foster homes, which charge a quarter or less of the cost of nursing homes and provide a less institutional setting. No other state, according to AARP, provides a greater percentage of long-term care in such a setting.
Karen Campbell ran two of Oregon's most specialized and highest-cost adult foster homes. But as of Aug. 22, Campbell is out of business, shut down by officials who acknowledge a desperate shortage of people like her who can provide specialized long-term care.
The shuttering of Campbell's facilities points to a risk inherent in Oregon's foster care-friendly model: The pressure to serve more people with more challenging disabilities threatens to overwhelm the capacity of mom-and-pop operators.
Adult foster homes present regulatory challenges similar to Airbnb's emergence in the hotel industry: The small-scale operations of a private home are hard to police. But the stakes in adult foster care are much higher because residents are so vulnerable.
"It's the Wild West," says Paula Carder, an assistant professor who studies adult foster care at Portland State University's Institute on Aging.
Pressures are growing as families chase scarce adult foster care beds amid state and federal assaults on Medicaid funding.
Mayer's family believes bureaucrats struggling with those pressures hastened his death.
Officials deny they are to blame. "That's ludicrous," says Mike McCormick, DHS's deputy director of aging and people with disabilities. "There was a history of noncompliance with the rules. This was a safety issue."
But Keyser, Mayer's sister, says the state set Campbell up for failure.
"It's been a cluster," she says, "one damn thing after another with no regard for any of the other residents, including my brother."
Even before his brain injury, Brad Mayer led a difficult life.
"We lived in an extremely violent household with a violent, gun-toting alcoholic for a father," says Keyser. "He despised Brad from birth and wanted him not to exist."
Mayer struggled through school and into adulthood, working a series of marginal jobs. He never married or had a long-term relationship. Only in the last few years before his accident did he find peace, working in customer support for a telecommunications company and making a group of friends at an Aloha church.
"He was happy for the first time," Keyser says.
Then, on Oct. 10, 2004, a man driving a jacked-up pickup ran a stop sign in Hood River and T-boned Mayer's vehicle. The truck's front bumper connected with Mayer's head, partially shearing his brain stem.
After leaving the hospital, Mayer landed in a nursing home in Vancouver, Wash. His family says conditions there were abysmal. When they found him a placement at Highland Heights, Campbell's home for medically fragile residents, his body broadcast neglect. The smell of feces and urine had so thoroughly permeated his skin that it took two months of twice-daily baths at Campbell's house to rid him of the stench.
"He was a big man," says Keyser. "He needed his diaper changed six or eight times a day."
Mayer had moved into what's known as an adult foster home.
Starting nearly 40 years ago, Oregon pioneered alternatives to nursing homes. There were two reasons: Staffing requirements and regulation make nursing homes expensive, and residents often prefer a less institutional setting.
Today, Oregon has 1,700 licensed adult foster homes. Each can serve up to five residents. Most are paid for by the Oregon Health Plan, the state's Medicaid program. Of every Medicaid dollar, Oregon's general fund contributes 31 cents and the feds 69 cents.
"Adult foster care is tremendously valuable," says PSU's Carder. "But for providers, it's a really difficult life. You have to be home all the time, and you can never take a vacation."
It takes muscle and fortitude to bathe and turn—at least once every two hours, to prevent bedsores—a man with traumatic brain injury.
Karen Campbell, 57, has plenty of both. Campbell has been bathing, moving and serving foster home residents since 1980.
Campbell, who raised seven children, is a plain-spoken dynamo. Behind horn-rimmed glasses, her broad face is often split by a grin and bracketed on one side by a cellphone held to her ear.
She lives in Highland Heights, a rambling, 3,600-square-foot hillside home in Gresham. There, Campbell cared for five medically fragile patients. Her family lived upstairs, and each resident had his own bedroom on the lower floor of the house, overlooking a backyard dotted with rose bushes and a spindly apple tree. (Her other foster home, "Shaun's Place," served five residents nearby.)
On a typical day, until Highland Heights closed last month, four caregivers began bathing patients at 6 am, while two office staff scheduled doctor appointments, managed medication and handled paperwork.
To move a man as big as Mayer from bed to wheelchair required a Hoyer lift, effectively a mini-crane.
While in bed, Mayer needed to be moved hourly to avoid bedsores. Staff fed him through a tube in his abdomen and regularly had to plug the opening to prevent him from pulling the tube out. Each interaction required gloving up—Mayer's caregivers could go through 50 pairs a day for him alone.
"Brad was gruff but an absolute sweetheart," Campbell says. "He loved to watch sports with my husband, and he was crazy about music."
In the afternoons, Campbell's residents gathered in a common area between their bedrooms. They might throw Nerf balls or play with balloons, both for entertainment and to sharpen their motor skills.
Patients at Shaun's Place who were more ambulatory engaged in tae kwon do, ballroom dancing and singing to stimulate their brains and get them moving.
Staff members monitored residents through the night, changing diapers and shifting those who could not move themselves.
Some residents lived with Campbell for more than a decade.
"They were people I loved as if they were my own children. And so did my staff," she says. "These men were not meal tickets to me."
Families, guardians and residents praise Campbell. Bev Bristol, whose son, Robert, moved in with Campbell in 2005, says Campbell was the best thing that happened to her son after he was injured in a car crash at age 18.
Prior to coming to Campbell, Bristol says, her son was in a nursing home.
"It was the difference between night and day," Bristol says. "With Karen, he got cognitive therapy and physical therapy. He made real progress, and she kept him busy."
Families from far away also sought Campbell's services.
Ursula Padrutt, a Swiss lawyer, represented an American who'd fallen seriously ill while in Switzerland. Padrutt flew to Portland, where the American patient had family, to inspect Campbell's facilities. Impressed, she sent the man to Portland on a private jet.
"The hospital in Switzerland said he'd be lucky to live for three years because he was so sick," Padrutt recalls. "With Karen, he lived eight years."
Padrutt says she visited her client a half-dozen times at Campbell's home. "It was a very clean, happy place," she says. "And he loved Karen. You could tell that."
But not everybody loved Campbell.
In the summer of 2016, state officials asked Campbell to take on a new patient, one with more challenges than any resident she'd managed before.
Earlier, the man's mother told the Governor's Task Force on Traumatic Brain Injury about the huge cost of her son's care.
"After his brain injury, our son was so heavily medicated, resulting in such severe behavioral issues, that he was the only patient in the psych unit at the hospital for nearly 10 months, costing [the Oregon Health Plan] over $370,000 a month until the state finally agreed on a placement," the mother said.
DHS searched the state for an adult foster home that could serve the man, who was prone to violence. Finally, in July 2016, the agency placed him with Campbell, in a room across the hall from Brad Mayer.
The man, whom WW will call "Kevin" to protect his privacy, required at least two full-time caregivers round the clock. The state paid Campbell $27,000 a month to care for him.
That's a lot of money, but a tiny fraction of the previous cost of keeping him at Salem Hospital.
Kevin's brain injury required heavy medication, contributing to his volatility. Overwhelmed, Campbell called 911 regularly. Kevin was sedated and hospitalized at least nine times in the first six months he lived with Campbell.
Campbell says Kevin's mother regularly complained to her and state officials about her son's care. (Kevin's mother declined to be interviewed for this story.)
Kevin also loved to walk—and sometimes run. He would go for miles around the neighborhood, caregivers trailing behind. (Foster home residents cannot be locked in.) Once, Campbell says, she and her staff had to restrain him physically from running into a busy street.
"We saved him from getting run over," she says, "but we got sanctioned for unlawful use of restraints."
Campbell's struggles to care for Kevin put her entire operation—two houses, serving 10 residents—in jeopardy.
The agency that paid her, DHS, had in 2016 seen its acting director and top managers fired for failure to adequately regulate juvenile foster care facilities and was under the Legislature's microscope.
Fred Steele, the state's long-term care ombudsman, says the broader agency turmoil appears to have spurred DHS to give foster homes greater scrutiny.
"I think they've changed," says Steele. "They started looking at caregivers in all settings in the way they always should have been before."
Self-effacing and slight, Lee Girard is an unlikely-looking cop. But as Multnomah County's director of Aging, Disability and Veterans Services, she's responsible for licensing the county's 636 adult foster homes. Every year, she shuts down a handful of them.
In Oregon's 35 other counties, the state regulates adult foster care. But years ago, Multnomah County established its own system. Inspectors make four regulatory visits per year to each home, compared to one a year in other counties.
"We've just had a desire to go beyond what the state requires," Girard says.
That approach can create tension.
"Some providers are feeling too much micromanaging from Multnomah County," says Petronella Donovan, president of the Independent Adult Foster Home Association. "It's a 'gotcha' attitude."
Girard's team walks a thin line. If inspectors do too little, vulnerable residents can suffer and bad outcomes can result. If they do too much, they risk reducing the availability of a scarce resource.
In November, five months after Kevin moved into her home, county inspectors documented 39 violations at Campbell's homes. Many of them related to record-keeping for medications. (The average adult foster home resident takes nine different prescription medications, so keeping them straight is crucial.)
The report also cited three instances of "abuse"—including restraining Kevin.
Campbell disputes those findings, although she acknowledges struggling with the administrative side of her business.
"They have added so much paperwork, it made it so I couldn't do what I was good at—the tactile care," Campbell says.
In March of this year, county inspectors returned to Campbell's homes and determined she had failed to address the violations they'd identified in November. Campbell signed an agreement not to accept any new residents and to close in three years.
But on June 9, a state and county team returned to Campbell's place and told her—in front of residents, including Mayer, Campbell says—that the homes needed to be shut down as soon as new placements for the residents could be found.
That's when Mayer learned he would have to move, his family says. Others agree the news was delivered insensitively.
"They didn't contact the families," says Paul Normandin, whose brother Fred lived with Campbell for a decade. "They didn't seem to care they had a family relationship with each other. They just broke it up."
Girard denies that. She says her staff made every attempt to notify residents' families rather than allowing residents to find out directly.
She says the real issue was Campbell's performance. "In the nine to 12 months before we moved to this agreement, we had a monitoring system with a progressive action plan," Girard says. "She wasn't able to comply with a plan of assistance."
Campbell's supporters say it's no coincidence that after operating foster homes for more than two decades, she fell afoul of regulators only after she agreed to care for Kevin.
Campbell's attorney, Lee Meadowcroft, formerly worked for Girard's unit at Multnomah County. He finds regulators' actions puzzling.
"There were some rule violations, but a lot of what they wrote her up for was ticky-tack stuff," Meadowcroft says. "If the county is really looking out for the good of the patients, they have huge discretion. And if you talk to any of the guardians, there was no issue with the care."
Girard acknowledges specialized adult foster homes are in short supply. And she's well aware the need is growing rapidly. But she says as a regulator, that's not her concern.
"For us, it's all about the quality of care that's provided," Girard says. "It's all about resident safety."
On Sept. 9, Mayer's family held a memorial service for him in Los Angeles, where he was born. After months of communication with DHS, Multnomah County and even lawmakers, Mayer's family is convinced the way regulators handled the closure of Campbell's homes led to his death.
"He'd be alive today if they'd handled this properly," John Mayer says.
McCormick of DHS says the idea that regulators were out to get Campbell is absurd. (Both state and county officials declined to answer questions about Kevin, citing federal privacy laws. They also declined to comment on Mayer's siblings' assertion that their brother would be alive if the closure of Campbell's homes had been handled better.)
"I thought I had a great relationship with Karen," McCormick says. "We would talk once a week. In the end, the issue was safety."
Yet in July 2017, as the deadline for closure of Campbell's homes loomed, officials couldn't find placements for all the residents. So they called Campbell—could she keep some residents an extra month?
"If I'm so dangerous, why are they leaving people with me?" Campbell asks.
She remained open until Aug. 22.
Today, Campbell is frequently on the phone with former residents' families, offering advice and support. On a recent day, Robert Bristol, who lived with Campbell for 12 years before moving to a foster home near Beaverton, returned to Campbell's home with his mother to play cards."My new place is OK," Bristol says. "It's not as good as Karen's place. I'm trying to teach them the things she did with us."
Campbell sobs as she compares the closure of her foster homes to the death of her 4-year-old from a brain tumor two decades earlier.
"This is a bigger death to me than my own birth child," Campbell says, "because it involves so many people."
Battered Brains
The aging of baby boomers will fill every long-term care bed in Oregon and then some.
Today, there are about 70,000 Oregonians in long-term care. Nearly half get that care in their own homes, according to state figures, and about 7,500 are in adult foster care. But the number of Oregonians aged 85 or older is set to soar, which will require an enormous increase in long-term care.
Less obvious than the inevitably of aging is the surge in traumatic brain injury, which often leaves victims needing specialized care for the rest of their lives.
Such injuries increased 47 percent nationally between 2007 and 2013, according to the Centers for Disease Control and Prevention.
The CDC doesn't break out numbers by state, but car crashes, one of the top causes of brain injury, have in the past two years shown the greatest percentage of increase in the past half-century.
Oregon's rate of serious car crashes during that time far exceeded the national increase: From 2014 to 2016, fatal crashes in Oregon rose 41 percent, more than in all but two states.
Sherry Stock, executive director of the Brain Injury Alliance of Oregon, says brain injuries are often misdiagnosed, sometimes missed completely and poorly understood, which has led to them being called "a silent epidemic."
"People with brain injuries don't usually have the support that people who are developmentally disabled do." Stock says. "For dogs and kids, you can get money. But if you are not a dog or a kid, you've got problems." NIGEL JAQUISS.