Lynda Hughes can tell when her son, Devin [Hughes], wavers on the edge of psychosis.
It’s hard to catch him before he falls.
The towering 26-year-old stays safe and content when he takes his medicine and lives with people who look after him. “I can go along for a while, and I can breathe, and think Devin’s being taken care of, he’s healthy,” Hughes says.
But his disease cycles. Stress builds, or Devin tires of side effects and stops taking his pills. Then he unsettles. Devin wanders into his mother’s prosthetics business in Bend, shuts himself in a room and refuses to leave.
“The second day, he starts laughing funny. Then he starts yelling at the people in the attic,” she says. “From there, it gets really crazy… everybody’s trying to kill him. Then I have to call the police. And that’s the hardest thing ever.”
Devin needs doctors, not cops. But Hughes has few options.
Oregonians with well-controlled mental illness generally can find routine care. But once they grow too sick to keep appointments, the health system offers little support until they explode into crisis and threaten themselves or others. Only then do resources pour in, from the time police and emergency room staff spend on psychiatric crises to $458 million to build two state mental hospitals.
Oregon spends $700 million a year on mental health, much of it fixing crises or treating people in hospitals and jails, estimates Jason Renaud, cofounder of the Mental Health Association of Portland. That meets 40 to 50 percent of the need, he says. Richard Harris, who oversees Oregon’s Addictions and Mental Health Division, sees a similar gap in publicly funded care.
“In the adult mental health system, we’re serving about 46 percent of the need,” Harris says. For adult addictions, it’s 24 percent.
Oregon could help more people, more cheaply and effectively, by preventing psychiatric crises instead of practically requiring them before giving care, health experts say. But barriers from budget cuts to federal accounting rules make it hard to intervene until people endanger themselves or others.
“Why don’t we help these kids while they’re younger, to keep them out of prison?” Hughes asks. “Why can’t we build more places that will house these people and keep them safe? And keep other people safe from them, by keeping them well?”
“And, hopefully, they can enjoy life a little.”
Scarce options for early intervention are a big reason police repeatedly encounter people with out-of-control mental illness. While roughly 4 percent of Multnomah County residents have a serious mental illness, Portland Police estimate that 12 percent of subjects they used force on last year were mentally ill. Some of those contacts were deadly, as when Portland Police shot Jack Dale Collins in March and Keaton Otis in May. Both men had chronic mental illnesses. Otis’ parents and Collins himself had tried but failed to get urgent psychological care in the days before they threatened police.
Many police train to deal with mentally ill people. Most encounters end with police calming people or helping them get medical care. Even then, it’s unhealthy for someone to grow so ill that police get called and a poor use of police time, says Derald Walker, president of Cascadia Behavioral Healthcare, a nonprofit that provides much of Multnomah County’s mental health care.
“Any time a police officer really has to engage with someone who is mentally ill on the streets, we define it as a failure of the social service system,” he says.
The first diagnosis of mental illness usually comes after a crisis, often in adolescence. With proper treatment, most people control their disease and improve. They often “graduate” from hospital or acute care to outpatient treatment, says Dr. Maggie Bennington-Davis, Cascadia’s Chief Medical Officer. But “part of the nature of having a serious mental illness is that it waxes and wanes,” she says. When the disease cycles down, some patients stop taking their medicine or seeing their counselor or doctor. They may think they don’t need help, or just be incapable of seeking it.
The cycle is etched in Lynda Hughes’ heart.
Devin was diagnosed with autism in first grade, Hughes says, but he was bright and “did pretty well” in his family and social life, until he was 19. Then he started to hear voices and lose control. He lost the ability to work and withdrew from others. Eventually, he found medicines that could restore reality, including lithium and the antipsychotic Abilify. But he hates the side effects and has quit taking the drugs when he’s on his own. “I wanted to see who I was,” Devin has explained to his mom.
For years, Devin has cycled between hospitals, group homes and more independent living, while Hughes struggles to find a safe place he can live and thrive. Devin has lived with his mother and with an older brother, but that ended in disaster. The 6-foot-6 youth has threatened to kill his mother, and accused her of trying to murder him with poisoned vanilla extract.
When Devin got an apartment with some roommates, he ate so little that his waist shrank six inches in a few months. Some mornings he’d arrive at Hughes’ office soaking wet from sleeping out under a tree. Once, she found Devin in his bedroom surrounded by knives and machetes, plotting to cut off his own hands.
Often, at those low points, someone calls police, who take Devin to a hospital where doctors medicate him, then “put him back on the street” hours later, Hughes says.
Devin has been hospitalized at his sickest several times, including two stays in the Oregon State Hospital. Nursing him back from the depths is slow and expensive.
“The more years it goes on, the longer it takes him to get out of it,” Hughes says.
In 2008, Devin wound up in the hospital in Bend in February, March and June. He got out in late June, just before Hughes’ 55th birthday, and vanished. He wandered to California, where police picked him up twice and hospitalized him twice. Hughes drove to fetch Devin, bringing him to Bend’s St. Charles Hospital, which wouldn’t admit him because he was not “an imminent danger” to himself or others, she says. Only after Hughes threatened to sue did St. Charles let Devin in. He spent the next 30 days there. The bill ran 43 pages, and totaled $67,904.
“That’s not including all of the doctors,” Hughes says. “And do you know how much they charge? I have a couple of bills for $8,000.”
When he got out, Devin spent five months in the Oregon State Hospital, at a cost of $70,000 or more.
Today, Devin lives in a mental health rehab home outside of Boardman. He makes a little jewelry, and socializes with other residents. He has started playing basketball, a hobby he hadn’t touched in years. He seems safe and relatively happy. For his care, Devin pays $523.70 a month from his disability insurance benefits.
A couple of weeks ago, Devin told his mother that the home will make him leave soon. “They said it’s a treatment facility, and he’s well enough to go.”
She has no idea where he might live next. Some health workers have advised her to wait for Devin to commit a crime and be sent to jail. “That’s how we handle it,” Hughes was told.
“It’s so frustrating and so horrible to go through this over and over,” she says. “You just get him well, and then you know you have to go through this again because he doesn’t stay stable. The system isn’t set up to let him stay stable.”