On January 3, 2015, my brilliant, funny, sweet, and immensely talented thirty-four-year-old son Matthew died in Delaware, an accident caused by inadvertent carbon monoxide poisoning. Sixteen months later, the pain is even greater than it was when we found out. While an accident, Matthew’s death was shaped by a lack of judgment itself driven by a ten-year struggle with serious mental illness. In the midst of a successful career in Hollywood, he had a psychotic episode at twenty-four that brought his vibrant life to a grinding halt. Most likely, Matthew suffered from bipolar disorder. There was never a definitive diagnosis, which is not uncommon, but in his case it did not matter. Different diagnoses can lead to different drug combinations or therapies, but a core part of Matthew’s illness was anosognosia—an inability to recognize that he suffered from a mental illness, and an unwillingness to accept any treatment. For ten years, we struggled with him and a system that made it impossible to intervene or help; of course, our frustration and pain paled next to the pain he felt and the stigma he suffered despite the fact that he was never a danger to anyone.
In the United States, if an individual is over eighteen, both federal and state laws in most cases give the individual enormous autonomy. Parents and other loved ones, not to mention most medical professionals, are unable to learn about their conditions or to influence treatment in any way. The autonomy flows mostly from an understandable concern about civil liberties, but for those with deep-seated psychoses and/or with anosognosia, the result is not freedom but more often tragedy, from homelessness to bullying to arrest and worse.
Read the full special report, The Politics of Mental Health and Addiction, here.
For loved ones of those with serious mental illnesses, sometimes the only realistic hope of getting treatment for their conditions is to have them arrested—and have a judge who has both the sensitivity and power to provide an alternative to prison or jail, including assisted outpatient treatment (AOT). That is what happened to the journalist Pete Earley, who recounted, in his 2006 book Crazy, the happier ending to the journey he had with his own bipolar son.
One judge who is making a dramatic difference is Miami-Dade’s Steve Leifman, who has transformed the way the county deals with mentally ill patients who come through the criminal justice system by developing partnerships with police and 911 responders to get them crisis intervention training (CIT). The judges in his court have separate mental health court hearings and provide an alternative to jail, while mental health, social work, and county officials provide wraparound services, including housing, therapy, medications, and counseling, along with job training, for people with mental illnesses. He has had remarkable success, transforming lives and reducing imprisonment and recidivism, even enabling the county to close a jail and save tax-payers $12 million.
But Leifman’s heroic efforts remain far more the exception than the rule. Many with mental illnesses who come in contact with police—most of whom do not have CIT—end up tased or shot because they do not respond to commands the way others do. And for those in jails, often for petty theft, loitering, or small-time drug offenses (a large number of those with mental illnesses have dual diagnoses, including substance abuse problems), the outcomes can be simply horrific. Last April, as the Washington Post reported, Jamycheal Mitchell, who suffered from schizophrenia and bipolar disorder, was arrested for stealing $5 worth of snacks. A judge ordered him sent for treatment to a state hospital until he was well enough to stand trial. Instead, because of bureaucratic malfeasance and incompetence, he languished for months in a jail, where he got no treatment and no attention and died of heart problems related to extreme weight loss.
Abuses in prison go beyond neglect. Eyal Press’s stunning exposé in the New Yorker showed mentally ill prisoners beaten, tortured, starved, and killed in Florida and New York, with abuses covered up. Even when officials vow to fix things, underfunding and privatization interfere. Fortunately, the policy dilemmas and the major problems associated with mental illness and substance abuse are now on the radar screen of local, state, and federal officials. A few weeks ago in Washington, D.C., the American Psychiatric Association Foundation, the National Association of Counties, and the Council of State Governments sponsored a conference inspired by Judge Leifman, called “The Stepping Up Initiative,” bringing together representatives from fifty counties around the country to share best practices to deal with the burgeoning cost and pain of the mentally ill caught in county jails.
In Congress, we are seeing bipartisan activity on several fronts. In the Senate, the Comprehensive Mental Health and Justice Act, cosponsored by Minnesota Democrat Al Franken and Texas Republican John Cornyn, passed on a voice vote last December after being subject to holds by Republican senators for an extended period. It has bipartisan support in the House, and should make it across the finish line this year. The act would expand mental health courts and veterans’ courts, and vastly increase CIT for police, school officials, and others who come into contact with those suffering from mental illnesses who have a crisis or confrontation, in order to avoid violence and tragedy.
Michigan Democrat Debbie Stabenow and Missouri Republican Roy Blunt were able to pass a bill in the Senate to expand funding for community mental health centers, the first step in a more comprehensive approach. And in both the House and the Senate, bipartisan mental health policy reform bills are inching forward: Tim Murphy, a conservative Republican representative from Pennsylvania as well as a psychologist, is joining with the former psychiatric nurse and Texas Democrat Eddie Bernice Johnson as chief sponsors in the House; Connecticut Democrat Chris Murphy and Louisiana Republican Bill Cassidy are sponsors in the Senate.
The House bill would provide incentives for AOT, more beds for patients with mental illnesses, and more flexibility in the HIPAA law to enable loved ones to get information about their mentally ill relatives, and would reform a dysfunctional federal government system by reorganizing the Substance Abuse and Mental Health Services Administration to make it more effective and responsive to the problems of serious mental illness. The Senate bill is significantly weaker, but still moves in the same direction.
Some months after my son died, I wrote an op-ed in the New York Times about our family’s journey, making a strong plea for the Murphy-Johnson legislation. I was flooded with responses, including from many who themselves suffer from mental illness, many more parents and siblings whose journey was similar to ours (although not always with its horrible ending), and many more yet who had experienced the suicide of fathers, mothers, brothers, and sisters after their struggles with mental illness. For a large number, it was the first time they had spoken or written to anyone about their experiences; some wrote that they had felt alone in their trauma. It has become clear to me that there is scarcely a family in America that has not been touched by these problems and issues. But it is also clear that there has been limited discourse on their experiences, on the policy and medical dilemmas we face, on what paths we need to follow, and on what works and what doesn’t.
There are essays in this special section on the unique problems in rural America, on stigma and interactions with police, on the treatments available on addiction and mental illness and what seems to work and not. And there are articles on the approach of the presidential candidates who have directly addressed these issues in their campaigns, especially John Kasich and Hillary Clinton. Kasich’s case is interesting in part because it reflects a reality of political life—lawmakers with passion about these difficult problems are often those who have been profoundly affected in their own families. That was true of Senators Pete Domenici and Paul Wellstone when they championed mental health parity in health insurance coverage (its spotty enforcement is the subject of another essay here).
At a time when few things in Congress are bipartisan, it is encouraging that this area is different. But that sunny reality has some dark clouds on the horizon. The Murphy-Johnson bill faces opposition from both Democrats and Republicans—with many Democrats resistant to anything that impinges on the civil liberties of the mentally ill, even if they are deeply psychotic or don’t recognize their illnesses, and many Republicans resistant to spending any money through the federal government, despite evidence that the money spent on effective treatment, including wraparound services and providing beds, along with alternative treatments to imprisonment for those caught up in the criminal justice system, can actually save money as it saves lives and heartache.
While the Franken-Cornyn bill has already moved through the Senate and has strong support in the House (in part because it is an authorization, not yet an appropriation), this Congress is en route to becoming the most unproductive in modern times and cannot be relied upon to act expeditiously on even consensus bills in an area that has deep needs at all levels. But given the broad support, you can expect similar legislation in the next Congress with a new president at the helm. And perhaps this special section of the Washington Monthly can raise enough consciousness and provide enough grist to create more public demand for action and move us at least a baby step closer to progress.