The Tragedy of Mental Health Law

How privacy and liberty laws may be closing doors to families who can help.

Posted Sep 23, 2013

Earlier this year, I published an Op-Ed in the Wall Street Journal (WSJ) titled: The Tragedy of Mental Health Law . I was moved to do so in the wake of the Newtown, CT, massacre—and its too many predecessor catastrophes—and had brooded about the topic for many years in my clinical work, policy roles and as someone who has listened and consulted to families for decades.

My goal in writing this Op-Ed was to give more prominent expression to the tragedy not only of mental health law but also the heartbreak that families too often experience trying to help a loved one with a mental illness get needed care.

I believe that families are often (not always!) a principal and sustained source of support and hope for people with serious illnesses—general medical as well as mental and addictive disorders. In addition, they are also our ‘early warning system’ in that they are uniquely able to know what trouble in a loved one looks like and witness it emerging. Families, as well, can be instrumental to engaging people with mental illness in treatments that they may not trust, nor believe are needed or that they shamefully eschew.

But times have changed, in ways good and not so good. The unbridled capacity for doctors fifty years ago to commit people to mental hospitals and treat them against their will has seen the pendulum swing to the point that it can be more difficult to get someone into a hospital and provide necessary treatment than it is to get into an Ivy League college. These liberty protections have resulted in repeated agonizing reports in the press of people who ‘die with their rights on’ or of communities—innocent children and adults—ravaged by individuals who have eluded potentially life-saving treatment.

In addition, privacy protections, especially Federal HIPAA law, have raised the threshold by which clinicians can speak with families and significant others. Unless a loved one is a minor or in immediate life-threatening circumstance families hear “sorry we cannot speak with you without signed consent”—consent that is not forthcoming from a person whose illness can impair his or her judgment and thereby shut out information vital to clinicians, such as a person’s actively using drugs and alcohol, or is in possession of a weapon, or has a history of violence.

The WSJ Op-Ed has reached many people, who at least feel heard. That has helped to validate the experience of many families about mental health law and practices and how change could wisely be shaped by asking families how to proceed. But more was needed and some amazing things happened, which I report here.

The Scattergood Foundation, a distinguished mental health foundation, indicated their interest in supporting an effort to advance the ideas offered in the Op-Ed. With their support, I was able to engage a group of prominent families and organizations because the article spoke to their experience and advocacy efforts. The result was a small, invitational meeting in Philadelphia at the Public Radio/TV station in mid-June of this year. We called that meeting OPENING CLOSED DOORS. That remains the name of the working group we have assembled. I am thankful to one of the families that attended for this name, which wonderfully describes our mission.

Those that came together to open closed doors included advocacy and professional organizations (including The National Alliance on Mental Illness, Mental Health America, Bring Change 2 Mind, The Brain and Behavior Foundation, The American Psychological Association, The American Psychiatric Association, The National Council on Behavioral Health, One Mind for Research, and The Staunton Farm Foundation); government agencies at municipal, State, and Federal levels (including NIMH and SAMHSA); consumers and families; clinicians; legal and clinical experts; judges; journalists; and professors and students. What bound us was a common concern for the lives of people with mental illness and their families. Since then we have interest in collaborating from other organizations, including Lady Gaga’s Born This Way Foundation.

The Opening Closed Doors convening group (a handful of people who believe in what Margaret Mead said about changing the world) spent the summer developing our work plan, which we have just released. We will establish a National Behavioral Health Leadership Council and focus our initial efforts on improving Mental Health Literacy (with particular attention to Mental Health First Aid) and producing a definitive guide to Mental Health Laws (liberty and privacy) in order to demystify and clarify what is law, what is no more than conjecture, and even identify how to work within the law and yet succeed in protecting lives.

Issues of liberty and privacy in mental health involve a fine balance between individual rights and the need to provide timely, necessary care to people with mental illness. Any advocacy path, thus, must be carefully constructed and thoughtfully pursued. We are beginning with the right people and organizations on board and a compelling mission—and we welcome ideas and involvement from readers of Psychology Today and other on-line and community groups.

The timing could not be more opportune as mental health problems are frequently ‘above the fold’ in every media form. The necessity for action has never been greater as Federal law, state health policy initiatives, and a collective call to “do something!” create conditions for change that we have not seen in mental health in 50 years.

We can open doors that today exclude families and create impediments to what we all want—a humane society that cares for its vulnerable people while respecting their dignity and rights.