NAMI Director Talks About Drug Money, Paternalism

This is the second installment of my interview with Mary Giliberti, the newly hired executive director of the National Alliance on Mental Illness. These questions were submitted in writing and answered through emails because of schedule problems on my part.

Question: NAMI was started by parents who believed they were being either blamed for their children’s mental disorders or ignored when it came to having MaryGiliberti psychiatrists, politicians and others listen to their concerns. In recent years, NAMI’s membership has grown to include a wide number of consumers. Mental Health America has always offered a strong voice for consumers and often has taken stands that are different and opposed to NAMI’s positions. It is easy to say that NAMI should represent all points of view, but there are serious differences between how parents and consumers often view HIPAA, AOT, and forced medication. How do you plan to reconcile these differences within NAMI’s membership between traditional NAMI parents and consumers who often favor self-determination versus paternalism?  

Ms. Giliberti: NAMI is 35 years old this year. The change is not recent. In 1985—almost 30 years ago—NAMI’s Consumer Council was established to advise the national board, with representatives from most states. Since 1989—25 years ago—NAMI has had at least four national board presidents self-identified as individuals who live with mental illness. 

I believe that NAMI members agree more than we disagree and the issues on which we vary are not irreconcilable. In fact, NAMI includes a variety of lived experiences that are similar in many ways and unique in others.

 Our board of directors is comprised of both individuals and families with lived experience with mental illness and I have been part of their very thoughtful conversations through the interview process and as I have begun my tenure. We are committed to a respectful dialogue, which strengthens all of us. NAMI is a movement of people who oppose the stigma of mental illness and fight for treatment, services and supports. Our members want accountability in the mental health system and outcomes such as employment, education and stable housing, not jails, prisons, homelessness and despair. We have many shared goals and we are a community of people who strive to understand and support each other.

 The need for NAMI remains enormous for families and individuals as well as communities overall. NAMI members have been there and have a shared lived experience with others. We know that the path to recovery lies with individual, family and community education, peer and family support, common sense public policy and the promotion of public understanding. These values are as true today as they were 10 and 20 years ago, only they are stronger. NAMI provides help and hope to millions of Americans in need, individuals and families. That is our mission, and that mission has not wavered.

 Q: Do you see a day when Mental Health America and NAMI might merge?

 No. I do not. The organizations focus on different issues.

 Q: NAMI has traditionally gotten much of its budget from large pharmaceutical companies, which has raised suspicions and criticism about NAMI’s ties to Big Pharma and the medical model. Do you intend to reduce NAMI’s dependence on Big Pharma and, if so, how will you make up for the loss of pharmaceutical dollars? 

G: Over the years, NAMI has received significant support from pharmaceutical corporations and we appreciate that support because we share the goal of improving outcomes for people affected by mental illness. We are aware of the need to diversify our funding to ensure that NAMI remains healthy financially. Progress has been made. Under my leadership, we will continue to diversify funding because this is a sound financial strategy.

Q: Journalist Robert Whitaker has questioned the medical model and use of anti-psychotics. This has made him a favorite with groups such as Mad Pride and organizations that openly encourage consumers to stop taking their medications. Do you believe NAMI should be more open to groups that favor alternatives to medications?

G:  As NAMI, we are committed to respecting all lived experiences with mental illness. As stated in our current strategic plan, the board has been clear on our intention to reach out to and engage a variety of experiences, perspectives and cultures.

 With that said, we know that medications can be life-saving and we also know that additional supports and services are also needed by most in their recovery process. Some people talk about the medical model and psychosocial models as if they are incompatible. In fact, they are not.  We need to support all approaches that have been shown to work, including medications and psychosocial interventions.

 Research has evolved to reveal the potential of many types of psychosocial interventions in addition to, or complimentary, to medication. One example of this is cognitive behavioral therapy, or CBT. A second is peer support. There are others. These both are validated not only by research but also by individual experience. So, we support compliments to medication that enhance recovery outcomes for individuals. The focus of our understanding, then, should be bio-psychosocial-spiritual, an approach that addresses the entire person—mind, body and sprit. Many people need different things. It is clear that an array of options from which health care providers and individuals have to choose is best, an array that includes medications, psychosocial services and supports and spiritual systems as well.

Q: NAMI traditionally has focused on serious mental illnesses such as schizophrenia, bipolar disorder, and major and persistent depression. Recently, it has expanded its agenda to include PTSD and borderline personality disorder. It also has reached out to the LGTG community and has begun talking about how trauma, abuse and poverty can play roles in creating mental illnesses. Do you believe NAMI is shifting away from its traditional focus? Should and can NAMI represent all mental disorders, including ones that some traditional NAMI founders called problems of the “worried well” or should it focus only on SMIs?

 G: People with serious mental illness will always be NAMI’s priority. At the same time our understanding of what is serious mental illness and knowledge of mental illness has expanded. It is not just about biology; there is a growing understanding that there is a relationship between environment and biology and that external as well as environmental factors are also a factor for many with respect to their responses and development of mental illness.  For example, while environmental factors may not cause serious mental illness, there is growing agreement that they can and frequently do affect the course of an illness.   

Our knowledge and understanding as NAMI have evolved as science has evolved.

P: The jailing and imprisonment of individuals with mental illnesses continues to be a national problem. Yet, some leaders at Bazelon have claimed this issue is being over dramatized and that there are no more people in jails and prisons today than before deinstitutionalization. Do you believe NAMI should be a leader in speaking out about such programs as CIT, jail diversion, mental health courts, and re-entry programs? 

G: The number of individuals with mental illness in the criminal justice system is a national disgrace. I am proud that NAMI has been a leader in promoting alternatives to incarceration. These include CIT, jail diversion, mental health courts and more. NAMI will also continue to work on improving treatment and re-entry programs for those who are incarcerated. NAMI has been a leader on these issues, and we will continue to be a leader.

 On Friday, Ms. Giliberti outlines her vision for NAMI.

About the author:

Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

Learn more about Pete.