Rosalynn Carter Mental Health Symposium Speech

Talk given at the Rosalynn Carter Symposium on Mental Health
November 21, 2014
Atlanta, Georgia

Watch video (my presentation starts at 54:20)

Looking at the history of mental health policy in our country, it might be themed “one step forward, two steps back.” I have seen this trend play out in my own life, as the daughter of two people diagnosed with schizophenia and bipolar disorder, and someone who myself has struggled as a survivor. In 1975, when my mother became pregnant, my family pressured her to get rid of me, caught under the eugenic spell that people with serious mental health conditions shouldn’t procreate. If it wasn’t for my mother’s noncompliance, I wouldn’t be here today. I am thankful every day for her fighting spirit.

She was a beneficiary of de-institutionalization, because she was not left to rot in an institution, but she was left to rot in the community, with no support, no hope, no help. I miss her every day, because she died at the age of 46, due to the effects of overmedication and a broken spirit. The 25 year disparity in life expectancy among people with serious mental illness is not just an abstract statistic to me, it is my legacy. It means that my son will grow up never knowing his grandmother. This is why I fight this fight every day: to ensure that no one else need endure this painful legacy. The personal is the political.

Looking at the history of mental health care in America, we turned a corner of hope when the recovery model began to gain credence in the early 1990s. One could say that recovery entered the mainstream with the President’s New Freedom Commission Report in 2003, which stated, “We envision a future when everyone with a mental illness will recover.” Since then, there has been a gradual but consistent shift in orientation, in practice, to support the growth of a robust peer specialist workforce, advances in trauma-informed care, and a number of other approaches that align with the recovery model. But sadly, the promising recovery orientation has failed to have the “teeth” that it could in terms of policy.

I would actually argue that today we face a real and frightening policy backlash. We have experienced over 100 mass shootings since 2009 in this country, but Sandy Hook was a turning point. With every tragic mass shooting that occurred, we saw in the media and on the Hill an unprecedented level of scapegoating of people with mental illness for the larger problem of gun violence in our nation. As we all know, people with mental illness are more likely to kill themselves or be the victim of a violent crime than to hurt someone else, but the facts seem to matter little when the public agenda is driven by fear and misinformation.

In today’s policy realm, the backlash is best represented by Rep. Tim Murphy’s “Helping Families in Mental Health Crisis Act of 2013,” which was developed as a response to the Sandy Hook tragedy. This legislation, while well-intentioned, would set us back 20 years in terms of progress towards achieving the recovery vision that began in the early 1990s. This legislation is posited as the way to prevent more mass shootings by expanding the criteria for involuntary outpatient commitment, euphemistically referred to as “assisted outpatient treatment.” Yet as we all know, it is nearly impossible to predict who will become violent, so this is clearly a policy measure that will not prevent future mass shootings, which have been mainly perpetrated by individuals who would not have met Rep. Murphy’s expanded criteria for outpatient commitment.

The bill greatly troubles patients’ rights advocates, because it is a slippery slope when our civil rights are eroded. Forced care should not be the first line response – it should be the very last response, when numerous forms of voluntary engagement have been attempted, and in the very rare instances when a person clearly represents a danger to themselves or others. Right now we have no idea whether people would voluntarily use services, because they are so often not available, and people are turned away until they are at the crisis point, fueling our crisis based systems.

The bill would also all but decimate the Protection and Advocacy agencies, which were funded in 1986 to address individual and systemic abuses in institutional care, while increasing institutionally based care options. At the same time, the Bill is anti-Olmstead. It would partially repeal the IMD exclusion, a massively expensive proposition, in order to allow for longer periods of institutional care in public or private psychiatric hospitals at the expense of voluntary, accessible services in the community. What we know is that so often the problem is most often not a lack of hospital beds, but rather difficulty in accessing information about available beds, as well as a lack of safe affordable housing and other community options to discharge people to, causing a backlog.

The legislation is anti-privacy, as it would seek to relax HIPAA standards to allow families to gain access to protected health information. Again, the problem here is not that HIPAA needs to be reformed, but that providers do not understand the emergency exceptions to HIPAA and in many cases hide behind the law to avoid dealing with families.

Yet Rep. Murphy has some very good points to make, which we all should be extremely concerned about. The most important is the heinous way that we as a society have collectively ignored and/or punished the people with the greatest mental health needs. He rightly points out the travesty of the criminalization of the hundreds of thousands of people currently languishing in prison for nonviolent offenses related to their disability. He rightly points out that majority of persons who are homeless today also struggle with serious unmet mental health needs. This is unacceptable, and an agenda that all advocates can agree is vitally important. We have to give people opportunities to get out of jail and off the streets into the community. That means that we have to fight for supported housing and community services – the fight that has been going on for 50 years now. We have not yet won it due to discrimination, due to stigma, a pervasive apathy that has not seemed to dissipate despite all the money that has been funneled into anti-stigma campaigns to date.

What we need is social justice. We need to demand that community services are adequately funded at long last, putting into practice the vision of the Mental Health Systems Act that President and Ms. Carter so boldly championed in 1980. I cannot help but think that if the Mental Health Systems Act had not been decimated by He Who Will Not Be Named, perhaps we would not be where we are today. But we cannot dwell on the past: we must continue to move forward. I for one will be on the Hill educating legislators on where we need to go. Please join us to stand against Representative Murphy’s legislation, and to call for good, comprehensive mental health legislation that protects civil rights while expanding access to and options for voluntary treatment, which still are practically nonexistent in so many communities.

Please stand with my organization, the National Coalition for Mental Health Recovery, as we advocate in Washington in the 114th Congress for a vision of real change. We will be fighting against the Murphy bill and for a comprehensive mental health bill that provides the following:

  • Expanded outreach and support for persons with intensive needs, through assertive community treatment teams and peer engagement.
  • Supportive housing, a proven, cost-effective approach to promoting stability and self-sufficiency.
  • Citizenship initiatives to support recovery by engaging individuals in activities that enhance their sense of belonging through valued roles in their communities.
  • Specialized young adult services to provide age-appropriate interventions and supports.
  • Wellness programs that support individual health through nutrition, mindfulness training, yoga and other positive activities.
  • Jail diversion, crisis intervention trainings, alternatives to incarceration, and reentry programs to prevent inappropriate use of the correctional system.

Together – let’s find a way to move from a climate of fear to a climate of hope. Thank you.

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