New Director Answers Questions About AOT, Hospitals, & Future of NAMI

Mary Giliberti, the new executive director of the National Alliance on Mental Illness, graciously agreed to be MaryGiliberti interviewed during the first week of January when she took charge of the nation’s largest grassroots mental health organization.  My mother’s funeral prevented me from scheduling a face-to-face conversation.  Knowing that many of you wanted to learn more about Ms. Giliberti and her views, I submitted written questions which she answered through emails. I am dividing our exchange into three blogs, with number two scheduled for Wednesday and the final segment for Friday.

I want to thank Director Giliberti for answering  my questions. She answered every question posed to her exactly as it was asked and did not set any pre-conditions. Ms. Giliberti was hired by the board after an extensive search that began early last year after Michael Fitzpatrick announced his retirement. Prior to accepting the board’s offer, she served as a section chief in the Office for Civil Rights at the U.S. Department of Health and Human Services. Earlier, she was director of public policy and advocacy for federal and state issues at NAMI.

Ms. Giliberti has spent more than twenty years working in the mental health field. She served as a disability counsel for the Senate Committee on Health, Education, Labor and Pensions and as a senior attorney at the Bazelon Center for Mental Health Law. She earned her B.A. at Harvard College and her J.D. at Yale Law School. She is a native of North Bellmore, N.Y.

Question: What interested you in applying for this position?

Giliberti: I wanted this job for three reasons.

First, I believe in NAMI’s mission. Through the experience of family, friends and people with whom I’ve worked, I have seen the difference that family- and person-friendly services and supports can make and the consequences when they are not available. Often the deciding factor as to whether a person gets needed help has less to do with the illness than where he or she lives, what is available and if the individual or family has someone to guide them through the system. NAMI and our grassroots members often provide that guidance and support.

Second, I have faith in the strength of NAMI’s greatest resource, its people—our grassroots members, our State Organizations, local NAMI Affiliates and our national staff. I have had the privilege of working with individuals and on all of these levels and am always inspired by their passion, commitment and resilience. I believe that individuals and families working together are unstoppable and will continue to make an incredible difference.

The third reason I wanted this job has to do with the unique opportunities NAMI has at this moment in time. The country appears to finally be waking up to the need to provide treatment and supports for persons living with mental illness. From governors to the Vice President, prominent policymakers are talking about treatment and recovery. In addition, the health care system is changing rapidly, and we need NAMI more than ever to ensure that these changes become opportunities, not more broken promises. NAMI needs to be at the forefront urging new ideas to improve treatment and life outcomes for individuals affected by mental illness. More of the same is not enough. It is not acceptable to permit people to continue to fall through the cracks due to neglect and unresponsive systems of care. We need to innovate and try new ways of encouraging and supporting people who live with mental illness, their families and our communities.

Q: What special qualifications do you have that you feel have prepared you for this important role?

G: As you know, I worked at NAMI previously as the Director of Policy and Advocacy and I focused quite a bit on state policy so I was out in the field at state conferences and working with state organizations and local affiliates. I met frequently with our members—individuals and family members—and heard their stories. Through NAMI Smarts, NAMI’s training program for grassroots advocates, I helped them learn how to tell their stories to legislators.

In addition, I have worked in all three branches of government—as a judicial clerk, as counsel to a Senate committee and in the Department of Health and Human Services (HHS)—so I have a very good understanding of public policy. Working at HHS, I understand some of the larger health trends and am committed to ensuring that people living with mental illness don’t get left behind by systemic changes in healthcare delivery.

I also have relied on NAMI colleagues throughout the country to provide information and referrals for treatment for family members and friends. So I understand the critical importance of people on the ground who really know how things work and how to link people with needed services. Our tireless grassroots advocates on the ground are what make NAMI what it is.

I have devoted much of my career to fighting discrimination and injustices against people living with mental illness. I am very aware of the stigma in society that makes it common practice to treat mental illness differently than other illnesses.

Q: Even before taking office, you received a letter questioning your views about deinstitutionalization because you once were employed by the Bazelon Center for Mental Health Law, a group that often finds itself in opposition to NAMI’s positions. You are also a lawyer with specific interests in civil rights. Below are some issues that often are lightning rods for NAMI members. While the executive director does not dictate policy, it would be helpful if members knew your personal position, if you wish to share it, or if you intend to support current NAMI position statements or will encourage changes or modifications in them. 

 1. Do you agree with NAMI’s policy that supports the passage of assisted outpatient treatment laws? 

 I intend to support the policies set forth by our grassroots elected board of directors. As the assisted outpatient treatment (AOT) policy states and I agree, AOT should be a last resort, not a first resort. To be a meaningful tool, there also needs to be services and supports available and accessible in the community. In addition, we need to focus on ways to engage individuals and hold providers accountable for outcomes.

 There is a great deal that we can still learn from research about meaningful engagement of individuals in their own recovery and we advocate for that. When engagement options are tried and fail, then NAMI’s policy indicates that AOT is a last resort tool to avoid bad outcomes and help an individual move forward with his or her life.

 Our current system and practices are downstream; the system waits until there is a crisis. We need to be proactive with early intervention and comprehensive strategies to avoid bad outcomes. And all people receiving services in the community, including those receiving them through AOT, must be treated respectfully and receive treatment and services that help them meet their goals for recovery. These principles are fundamental to NAMI’s advocacy on all issues.

2. Do you favor changing the current “dangerous” criteria used by states in deciding whether or not to involuntary commit an individual to treatment to a “need for treatment” standard?

As previously stated, there are policies on these issues that have been adopted by the NAMI board of directors. NAMI’s policy supports a more flexible standard based on assessment of the severity of a person’s disability and need for treatment. That includes consideration of a person’s past history.

I also want to point out that we need to be thinking about how to prevent individuals from reaching the point that involuntary interventions become necessary.  If we can improve continuity of care and accountability in the mental health system, we can begin to intervene before we are at the point of need for treatment or dangerousness.  This may not prevent involuntary interventions in all cases but it will significantly reduce the numbers of crises situations that necessitate consideration of involuntary treatment. In too many parts of the country, treatment isn’t available until people go into crisis and then only for as long as necessary to alleviate the crisis. That is unacceptable. We would not accept this for heart disease, cancer, or strokes and we should not accept it for mental illness either.  NAMI ‘s policies supporting our commitment to early identification and intervention, crisis services, and access to treatment are an important companion to our policies on commitment.

3. Do you believe states should either stop or slow the closing of state hospitals? Should state hospitals be part of a state system as well as community-based centers? 

I don’t think the issue is state hospital vs. community-based centers or services. I think the issue is whether state systems have sufficient capacity to meet the needs of individuals at the level of need. Adequate hospital care is critical. But in trying to figure out how many beds are needed, we have to look at whether the system is meeting the needs at the level of need and in a timely way. So for some people, mobile crisis or crisis beds can fill the need and the hospital beds can be available for others. In some communities, the system does not have a way to tell you where beds are available. In other situations, individuals are part of a “revolving door” and Assertive Community Treatment (ACT) teams need to be considered to reduce the need for hospitalization. It has been well established that ACT teams reduce hospital use. We also need more housing options, linked with these supports.

 I know that many NAMI members are extremely frustrated by the inability to access acute care and are too often told that hospital beds are not available and sent home with no help. This must change. But I think the answer is more complex than more beds. When communities see an increase in people in the emergency room for physical health conditions, they start by looking at why they are there and whether individuals can be treated in a different setting. If so, they start to educate and refer people to other levels of care. Similarly, we need to look carefully at communities and ensure that lower levels of care, such as crisis services and evidence based interventions like ACT, are available and then add beds for remaining hospital needs.

In addition, when talking about hospital services, it is important to also look at continuity of care. During my career, I have reviewed many discharge plans and processes and far too often there are long waits before community services begin, lack of a meaningful connection with community providers before discharge, and no accountability for outcomes by the hospital or community provider. This is changing in other areas of healthcare and must change for those living with mental illness as well.

On Wednesday: the role of consumers and drug companies in 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.