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In a year when political discourse seemed to reach all new levels of fire-spitting acrimony, one collaborative bright spot was the recent passage of the 21st Century Cures Act, part of which aims to reform the nation’s mental health care system. The $6.4 billion legislation received broad bipartisan support in the Senate and House and was signed into law by President Obama earlier this month, and includes provisions intended to improve the diagnosis and treatment of mental health and substance use disorders, increase access to effective, evidence-based mental health services, and shift the seriously mentally ill away from the criminal justice system and into appropriate treatment.
I heard author and mental health advocate Pete Earley speak about the pending legislation in September at a National Press Foundation fellowship seminar, Training Journalists in Mental Health, in Washington. Earley is the bestselling author of Crazy: A Father’s Search Through Mental Health Madness, a 2006 book that tells the story of his own experience after his college-aged son developed bipolar disorder and spent years cycling through hospitals and jails; Earley also reported on life inside Miami Dade County Jail, which like much of the U.S. prison system has become a de facto warehouse for the untreated or undertreated mentally ill. Since the publication of Crazy, Earley has become a vocal advocate for mental health reform in writing and speeches to stakeholders all over the country. He has testified or appeared before Congress five times, including once in the exploratory phase of the legislation that just passed. I reached out to Earley to hear his thoughts on the new law.
What’s your general reaction to the passage of this legislation?
Overall, I’m hopeful that this bill signals a real shift in where mental health is going. It refocuses programs on evidence-based tools that will look at serious mental disorders such as schizophrenia, bipolar disorder, and severe and persistent depression rather than other DSM-5 disorders, such as restless leg syndrome and problems of the so-called “worried well.” It calls for a serious reexamination of HIPAA with an eye toward allowing caregivers, especially parents of the mentally ill, more access to information and participation in the treatment team, which is good. It calls for additional funding for assertive community treatment, which is perhaps the most effective and cost-efficient way of treating people in our communities, especially when combined with housing. I'm especially thrilled with the emphasis on how to stop the inappropriate incarceration of people with mental illness. What we’ve discovered is it's cheaper to provide treatment and help people than it is to have them going in and out of jail constantly. So I like the funding that Senator John Cornyn of Texas got for crisis intervention team (CIT) training, which teaches law enforcement and communities how to handle the mentally ill, as well as mental health courts and reentry programs.
Overall, I think the biggest achievement is that it elevates the importance of mental health in the federal government through the appointment of an Assistant Secretary for Mental Health and Substance Abuse. I think that will cause a major shift in [the] Substance Abuse and Mental Health Services Administration, which is what Rep. Tim Murphy (a sponsor of the bill) wanted, making it focus more on mental health and less on programs that Murphy strongly felt are anti-psychiatry and feel-good programs with little value. All of the changes in the new law are positive steps forward, but it will all depend on whether someone strong enough to change the culture at SAMHSA is appointed and whether HHS and the feds put money behind necessary services, which they have never done adequately.
What do you hope to see in this new assistant secretary?
I want a doctor or an experienced advocate who knows what it's like to actually run a government agency. The qualities that make you a good psychiatrist don't necessarily make you a good manager. We’re going to need someone who knows how to manage government, and also someone who's not going to be afraid to take on some pretty strong mental health factions. We need someone who can bring everyone to the table.
Now that the law passed, what concerns do you have about its implementation by the next administration?
Sure. Before the election, Hillary Clinton laid out a pretty clear plan of what she would do with mental health reform. We really haven't received any of that from Donald Trump. It just hasn't been on his agenda. So the question is, will this new administration give a damn about mental health? We have a new law coming that Obama signed that says the federal government is going to elevate the position of mental health, but that’s not going to mean anything if the new Secretary of Health and Human Services doesn't see it as a priority, or if you get an ineffective assistant secretary in there who doesn't do anything.
I suspect that with the Republicans in control, there will be no new funding but demands to shift funds away from existing programs that they consider superfluous into evidence-based programs that they believe target the seriously mentally ill—even though this is a small population of the overall number of Americans with mental disorders. This kind of thing happened with the Reagan administration, too. My big frustration is that there's a failure to see a link between helping people with mental illness and housing, jobs, and transportation. I'm hoping that this new assistant secretary, who's supposed to be able to look at the whole federal system, will look at that too and not just how to clean up SAMHSA. The fact that there's no new money when it comes to housing is especially dangerous, I think.
Would provisions of this bill have helped your son?
Absolutely, in a few ways. My son was shot twice with a taser by the police—CIT training could have prevented that. My son has a criminal record because he broke into an unoccupied house to take a bubble bath. Having a jail diversion program with a mental health court would have opted him out of the criminal justice system and not permanently stained him as a criminal. The legislation provides really important support for early intervention in a first psychotic episode, which certainly would have helped my son. The first time he was diagnosed, we were told he had a lifelong illness and would probably never work. We were given such a dismal description of his future life that my son basically said, ‘The doctor’s crazy, I’m not.’ I think most people, when they have their first psychotic break, want to know what's going on too, and that's when you can reach them. And with regard to reexamining HIPAA, I think had I been welcomed more as a partner than being seen as an enemy, that could have changed a lot too. Had there been early intervention and a more welcoming and positive attitude, and had I been better educated as a parent, I believe my son would have accepted help and gotten engaged much sooner than after seven years of hospitalizations and encounters with the police.
What do you think is insufficiently addressed in the legislation?
One of the biggest issues when it comes to mental health, and something nobody in this country want to deal with—the dangerous criteria, which says a person has to be a danger to themselves or others or gravely disabled before the state can step in. Nobody wants to address it because nobody knows of a better solution. Our history is such that nobody wants to give power to three doctors to say ‘You need to be institutionalized,’ and "dangerousness" is a vague criteria. Nobody can tell if you're going to be dangerous. We have to either create a system that gets people drawn in before they become dangerous, or we need to examine really hard questions, like how do you help someone who doesn't want help, who clearly is ill? I believe that until we as a society come to grips with the foolishness of the dangerous criteria and when we will intervene, we will have a difficult time reaching the sickest of the sick and helping them. We must protect civil rights but also not abandon people on the streets, which is a state issue and complicated. One way to achieve that would be to provide easily accessible mental health services before someone reaches dangerousness.
You’re well acquainted with the various and often warring factions in the mental health world. How do feel about those fissures these days?
I think it's counterproductive and sad that within the mental health community there's so much division, but it's typical when you're dealing with civil rights and something like mental illness. One side says if we all had access to good services and provided people with jobs, we'd solve the problem. The other side says, no, these are diseases of the brain and you need involuntary commitment. Well, look at my son. When he got sick he had a loving family, a job, and a house, and it wasn't enough to keep the illness away. The truth is I think we need all these things— treatment, jobs, housing. I want everything. But still, how do you help someone who doesn’t want to be helped, without trampling on their rights? These are thorny issues. They’re not easily answered.
Pete Earley blogs at www.peteearley.com
