NAMI and Advocacy: Staying United in the Face of Challenging Times

By Mary Giliberti, J.D. | Jun. 16, 2017

As I’ve been thinking about the upcoming NAMI National Convention, I wanted to share some reflections with all of you on advocacy—recognizing that not everyone will be able to attend at the end of June. Advocacy has always been at the core of NAMI’s mission. It was a passion of NAMI’s founders and remains so today. Why? Because advocacy is one of the best ways we can address the systematic injustices and disparities that people with mental illness and their families face every day.

I see these injustices firsthand across the nation. One of the most important responsibilities of my job as NAMI’s CEO is attending state NAMIconventions with our members and visiting places where people with mental illness are—such as the Cook County jail in Chicago, homeless shelters in San Francisco and early psychosis programs in Boston. I also talk with our members and staff after tragedies happen in their families because of mental illness, including suicide.

Like you, I am pained by our nation’s mental health crisis and how it affects the people I work with and serve. But I take some comfort in knowing that NAMI advocates work tirelessly to advance research, mitigate the tragic consequences that stem from lack of services and promote programs that offer promise and hope to future generations.

The power of NAMI’s advocacy is not in having a large team of lobbyists or a political action fund. In fact, we have neither. NAMI’s advocacy power comes from being a nonpartisan organization with passionate grassroots members who are willing to speak up, each with a different story, on behalf of people who live with mental illness—particularly those with the most serious conditions.

Advocacy has never been more important than it is today, as Congress considers an unprecedented assault on Medicaid, the backbone of services for people with the most serious mental illnesses. That’s why the location of our National Convention this year is so important: Washington, D.C.

NAMI will be unleashing the power of more than 1,000 NAMI advocates—a record number—to go to Capitol Hill and let their elected officials know that we need more research, more services and more coverage for mental illness, not less.

NAMI is leading the fight, along with colleague organizations, to protect Medicaid and insurance for people with mental illness. And again, our grassroots advocates are stepping up to the plate. This year, advocates across the country helped us send a record number of emails urging members of Congress to protect Medicaid for people with mental illness, including many of our nation’s veterans. With your help, our advocacy will continue to grow and, with it, our ability to fight threats and work for a better future for people with mental illness and their families.

As we head to Capitol Hill, it’s important to remind ourselves that our visits are building on significant policy accomplishments:

• Perhaps most exciting is the work we are doing on promoting early identification and intervention in the treatment of psychosis. Historically, there has been a lag of more than 10 years from the time symptoms of psychosis first emerge and the time an accurate diagnosis is made and treatment commences. During these years, once promising lives frequently go off track and dreams of school, work and independence are abandoned.  First Episode Psychosis (FEP) programs are the most promising practices to emerge in decades and are expanding in communities across the country.

NAMI’s advocacy has been instrumental in making this happen. Our work led to a doubling of federal funding for FEP programs. NAMI is working closely with the National Institute of Mental Health (NIMH) to strategically expand these research-based programs so every young person experiencing psychosis and his or her family has access to the most effective care. NAMI has been a true catalyst for change: We’ve helped grow early psychosis programs from a handful of programs in four states to 114 programs across nearly every state in just a few years. The research conclusively establishes that while young adults are participating in these programs, they achieve better outcomes in school and work.

• NAMI’s advocacy also played a key role in the passage of mental health reform legislation in 2016 as part of the 21st Century Cures Act. NAMI sent over 100,000 emails to Congress and helped deliver 230,000 petition signatures. NAMI also worked with congressional staff to ensure that the act included key provisions to elevate the federal role in addressing the mental health crisis in America, including provisions that:
  • Support local initiatives to divert people with mental illness from incarceration into treatment
  • Increase crisis services and track inpatient psychiatric beds
  • Provide training on the proper implementation of HIPAA
  • Increase the number of mental health professionals

During our fight, we were grateful to longstanding champions such as Congressman Tim Murphy and Congresswoman Eddie Bernice Johnson.  We also found new supporters in the Senate to champion some of these provisions, including Senators John Cornyn and Chris Murphy, who will be speaking at convention. Senator Bill Cassidy, another leading advocate for mental health reforms in the Senate stated: “Without the support of NAMI, who tirelessly worked the hallways of Congress and implemented an impressive grassroots campaign, this legislation would not have been possible.”

• NAMI also leads the way in fighting for alternatives to incarceration, including implementing our Crisis Intervention Team (CIT) programs for police and other first responders. We don’t hesitate to get involved in cases that may not be popular, but reflect the worst abuses that occur when people with mental illnesses don’t get the help they need, including efforts to end the use of solitary confinement and the death penalty for people with mental illness.

• NAMI has also successfully advocated for research at NIMH on housing and mental health services. At a time when other programs were seeing budget cuts in 2017’s fiscal year, we saw funding:
  • Increase by $53.5 million for NIMH
  • Increase by $51 million for SAMHSA, including a $30 million increase for the mental health block grant program,
  • Increase by $133 million for McKinney-Vento Homeless Act programs, including $10 million for new Section 8 vouchers for people with disabilities, including mental illness.

The NAMI National Convention is rapidly approaching. I can’t wait to see NAMI members on Capitol Hill, advocating for more research and better services for people with mental illnesses. If you cannot join us in person, join our advocacy virtually. I look forward to working with all of you as we advocate together.