Some who suffer refuse to acknowledge (or may not even realize) their peril – and, for legal reasons, they don’t receive the help even their families see that they need.
By Richard Harris JUNE 24, 2016
Earlier this month, three faces — two women and a man — stared back at me from the front page of the Washington Post over the intriguing headline “Unwell and unashamed.” Each had gone public about a condition that for many remains a tightly held secret within the family or among close friends. They were part of a new “groundswell to lift the stigma connected with mental illness.”
Since the beginning of the year, the Post said millions of people have taken to social media, defiantly outing themselves as mentally ill, many using specific hashtags such as #sicknotweak. It’s hard to quantify, but some, including a company that analyzes mental health data, say the flood of disclosures had risen to the level of a movement.
This new openness also coincides with increasing police encounters with the mentally ill around the country. A recent Star Tribune survey of nine of Minnesota’s largest law enforcement agencies reported that over the past six years police are responding to an average 34 percent more mental health calls.
Perhaps it was only a matter of time before mental illness, which affects some 43 million people in a year — more than 18 percent of all Americans — would slowly come out of the shadows, working its way into the culture in plot lines in TV shows, in film and on stage. It reminds some of the early days of the gay-rights movement that began chipping away at the stigma. In Minnesota, the “Want to Talk About It” public service announcement campaign has been aimed at the mental health stigma.
Last November, in a powerful commentary in the New York Times, Washington political scientist Norman Ornstein, a product of St. Louis Park and the University of Minnesota, reminded us of the flip side of mental illness: those who still suffer silently and either refuse or are unable to acknowledge their illness. Ornstein recounted the death last year of his 34-year-old son, Matthew, from accidental carbon monoxide poisoning. He had fallen asleep in a tent with a propane lantern. That was the immediate cause, but as Ornstein wrote, “his death was shaped by a lack of judgment driven by a 10-year struggle with mental illness.”
Matthew Ornstein had been a champion high school debater, studied at Princeton, headed for Hollywood and quickly created a TV show with his debate partners called “Master Debaters.” But at 24, he suffered a psychotic break that his father says “brought his vibrant life to a grinding halt.” The illness was never officially diagnosed, but was thought to be bipolar disorder made worse by a companion illness, anosognosia — the inability to recognize you are ill. Because Matt didn’t believe there was anything wrong with him, he refused all medicine. And since he was over 18, neither his parents nor mental health professionals had the authority to force him to get any treatment.
Bad enough that Norman Ornstein and his wife, Judith Harris, faced the nightmare that a serious mental illness had overwhelmed and redefined their older son at the start of a promising career. But now they faced a second torment: a legal barrier to get Matt the help he so desperately needed. The Ornstein family confronted the clash of civil liberties vs. the imperative to help a suffering adult child. “It’s a delicate balance and perfectly understandable that for a large share of the mentally ill, they want to be autonomous,” Ornstein says. “But it’s taken to an extreme where it simply bypasses the collection of people like my son who were incapable of making their own decisions, either because they’re so deeply caught up in their own delusions or because they have an anosognosia and don’t recognize they have an illness.”
Because the standards for involuntary treatment of an adult in most states require the individual to literally be an imminent danger to himself or others, there are few options available to the loved ones of the adult mentally ill who refuse treatment. “We were in a situation where my wife said at times, ‘My only hope is if Matthew gets arrested, the judge can give him the offer of getting treated or going to jail,’ ” Ornstein says.
When Pete Earley’s son, Kevin, was diagnosed with bipolar disorder at age 23, he was arrested for breaking and entering and destruction of property. A judge sentenced Kevin to two years of probation, but that proved a temporary bandage. He took his meds during those two years, knowing the probation officer was watching. But once the sentence was up, Kevin stopped taking meds and his behavior became increasingly erratic, culminating in a psychotic and violent episode where the police were summoned, shot Kevin twice with a Taser, hogtied him and carted him away.
Kevin’s story has a happier ending than Matthew’s. After five hospitalizations, he no longer denies he’s sick, lives independently, pays taxes and has two jobs, including as a certified peer-to-peer counselor on a jail diversion team. But the two cases share a common thread: a mental health system that failed them.
Ornstein has called Washington home for nearly 50 years. But if there are any doubts that his Minnesota roots run deep, just look in his wallet. What’s left of a faded $8 grandstand ticket to Game 7 of the 1965 World Series between the Twins and Dodgers is tucked inside. (He also follows the Vikings and Timberwolves.) Ornstein was born in Grand Rapids, Minn., and spent some of his childhood in Canada, but returned home to St. Louis Park and entered the University of Minnesota as a 15-year-old, graduating at 18. Even when Ornstein first journeyed to Washington after graduate school, his congressional fellowship desk was literally in the personal office of then-Rep. Don Fraser, who would go on to become mayor of Minneapolis. He maintains close ties with the Humphrey School of Public Affairs at his alma mater along with the who’s-who of Minnesota politics, including Walter Mondale and U.S. Sens. Amy Klobuchar and Al Franken. After meeting then-comedian Franken at the 1988 Democratic National Convention, the two became fast friends and Ornstein became an unofficial adviser to Franken’s contested, but eventually successful, first Senate run.
In a speech to the D.C. Behavioral Health Association early this month in Washington, Earley, the author of “Crazy: A Father’s Search Through America’s Mental Health Madness,” had a message: engage. He told the audience he had visited 48 states in the past decade, had toured dozens of treatment programs, jails and prisons, and had spoken to parents, mental health professionals, law enforcement officers and judges. The key, he said, is early intervention, eliminating stigma and getting the person “engaged in his own treatment, even if he is the sickest of the sick. I deal with my son differently. I am not a parent. I am a partner with him.”
In the Atlantic recently, Ornstein cited Hennepin County for adding money to community behavioral-health facilities as “an alternative to jailing people in crisis.” In the wake of deinstitutionalization, Earley suggested “rather than locking up 365,000 Americans who have bipolar disorder, schizophrenia and severe depression in our jails and prisons, we need to offer them help so they don’t become entangled in our criminal justice system.” Both Earley and Ornstein singled out the work of Miami-Dade County Judge Steve Leifman for transforming the way the Florida county deals with mentally ill patients who enter the criminal justice system, partnering with police and 911 responders to get them crisis intervention training and to have separate mental health court hearings, reducing imprisonment and recidivism. The changes have saved county taxpayers some $12 million in the process.
“I’ve come to believe there is no magic formula, no trick that is guaranteed to help someone accept that they have a serious mental illness,” Earley said.
In his speech, Earley lamented that complicating a unified effort at solutions were competing factions within the mental health community. On one side are groups like the Bazelon Center for Mental Health Law. Spokesman John Head says “people want to portray us as absolutists, that no one should be subjected to involuntary treatment. We believe in a balancing act, though taking away someone’s human rights and their ability to make decisions should not be done lightly. There needs to be a reason for doing it.” On the other end of the spectrum, groups like the Treatment Advocacy Center put a priority on “insuring that the most severely ill have access to treatment, especially if they lack insight into their illness. That could include civil commitment and involuntary treatment,” says communications director Jamie Mondics.
Following Matthew’s death, Norman Ornstein, grief-stricken and shattered, could have curled up in the fetal position. Instead, the congressional expert opted to do what he has done for more than four decades in Washington: research, analyze and diagnose a problem and help develop a legislative remedy. But this time, the project would be very personal, a labor of love.
Accompanied by his wife, one of Ornstein’s first stops was at the office of Dr. Tom Insel, then director of the National Institute of Mental Health. “The timing of their visit was amazing,” Insel says. “Several ambitious efforts to transform mental health care were working their way through Congress, the most activity in the last few decades.”
There’s some hope that during this election year, Congress will pass a weakened version of a bipartisan bill that mental health advocates have been tracking, sponsored by Rep. Tim Murphy, R-Pa., a former child psychologist, and Rep. Eddie Bernice Johnson, D-Texas, a former psychiatric nurse. The key provision Ornstein pushed for would fund expanded assisted outpatient treatment (AOT). Insel says it’s important for states to “wrap a more holistic set of services around AOT and not just tell someone to get Haldol or another antipsychotic drug each week.”
Indeed, Sen. Al Franken says AOT must be accompanied by wraparound services, such as housing. “The best cure for homelessness is a home,” he says.
There’s more optimism in the Senate for the Comprehensive Mental Health and Justice Act, co-sponsored by Franken and John Cornyn, R-Texas. The legislation would expand mental health courts and vastly increase crisis intervention training for police, school officials and others who have contact with the mentally ill. Franken says: “The United States has 5 percent of the world’s population, but 25 percent of the world’s prison population. That’s in large part because we have criminalized mental illness.”
Ornstein hopes action by Congress to allow court-ordered treatment of mentally ill adults will keep other parents and sibling from suffering the way his family has.
“To me, you have a mental health system that basically says, ‘That’s fine, that’s what he wants [an adult with mental illness who doesn’t know he’s ill but refuses treatment]. That’s a system that’s out of control,” Ornstein says with a sense of exasperation. “And if you have a system that doesn’t allow the resources to take care of people, which means you’re going to spend more money by putting them in jails or prisons while adding to the heartache, that’s a good definition of insanity.”
As one of Washington’s most sought-after political analysts (who was one of the very few to predict the possible rise of Donald Trump to the Republican nomination), there’s a lot to keep Ornstein distracted from his loss these days. But as he said recently, “this isn’t easy.” The loss of a child is nothing short of devastating. To honor their son, Norman Ornstein and Judith Harris established the Matthew Harris Ornstein Memorial Foundation (mornstein.org) to promote Matt’s passion for debate by sponsoring high school debate in less-privileged communities, to help those suffering from serious brain diseases and their loved ones and to work toward the elimination of the stigma associated with them.
Freelance writer Richard Harris lives in Bethesda, Md.