Lisa Dailey: Treatment Advocacy Center’s Fight To Make Seriously Mentally Ill A Priority

(1-5-22) Lisa Dailey, Executive Director of The Treatment Advocacy Center, answered the same four questions that I posed to Dr. Delphin-Rittmon, Assistant Secretary for Mental Health and Substance Abuse, and other mental health leaders at the start of the new year. Thank you Director Dailey for your responses.

Question One: What was Treatment Advocacy Center’s biggest accomplishment during 2021?

The second year of the pandemic presented a new and unprecedented challenge to our commitment to represent those with the most severe mental illness in every relevant conversation.

In a normal year, we know what this encompasses. In 2021, research began to demonstrate something very concerning: our specific population, and particularly those with schizophrenia, are at a much higher risk of death or severe illness due to COVID than any other population apart from the elderly. It wasn’t a modest effect. The data was absolutely clear that failure to prioritize vaccination for those with SMI in our public health response meant that many of our loved ones with SMI would literally die. We knew it wouldn’t be enough for people to simply be eligible for the vaccine; those most at risk did not know that they were at greater risk.

We were not seeing any efforts to acknowledge and address the unique hurdles to vaccination faced by those with severe mental illness.

This research began to come out in January, yet we saw no move within our nation’s COVID response to prioritize those with schizophrenia in the way that those over 65 or those with other diseases, such as diabetes or asthma, were being prioritized. This galvanized our staff and brought together leadership from all of the national mental health advocacy groups around this specific issue. Through a sustained campaign of joint advocacy and multi-pronged efforts to push for recognition of the research, we were able to convince leadership at the Centers for Disease Control to formally add those with schizophrenia spectrum disorders and mood disorders to the list of those most at risk due to COVID.

That small act by the CDC opens a lot of doors for proper prioritization of our loved ones with SMI within the pandemic crisis response.

Question Two: What are your priorities going into 2022?

We will continue our push for research prioritization of schizophrenia and other severe mental illness.

This includes our call for National Institute of Mental Health to invest in clinical research with the realistic ability of helping people who currently live with severe mental illnesses. Our commitment is to all those affected by severe mental illness, and that includes those who do not respond to currently available medications. A radical advance in medicine for those with severe mental illness is long overdue.

2022 will see the launch of the 988 number, whether we’re ready or not. We have an obligation to ensure that state implementation of 988 does more than just create a new phone number to connect people in crisis to the same patchwork of unconnected, inadequate services that led to increased reliance on law enforcement in the first place.

Treatment Advocacy Center has two main priorities during this critical phase of 988 planning.

One the loftiest goals of 988 is to decriminalize our response to psychiatric crisis and to reform our response system to handle crises as medical and social service issues rather than criminal justice ones. But that literally means that we intend to serve more people in hospitals, crisis stabilization units, community-based programs and through skillful handling of crisis calls either at the call-center level or through mobile crisis teams.

Therefore our first priority is to push for 988 planning to recognize the need to invest in medical and mental health infrastructure. There will be catastrophic unintended consequences, both systemically and for individuals in crisis, if we don’t plan for this. This definitely includes assessing the dearth of inpatient or subacute treatment beds. Congress pushed through a historic massive increase in funds for mental health; if we are not going to address those needs now, when will we?

Treatment Advocacy Center’s second priority is to push for crisis response models that are designed to handle the most serious and high-risk crises. A system designed for the worst case scenario can handle every eventuality. We will be pushing for states to develop plans able to respond to a crisis arising from severe mental illness, including those in psychosis, without the tragic outcomes that we see all too often now. We can’t continue to design our services around the less challenging cases. A crisis response system that can safely and compassionately serve the sickest among us can serve us all.

Question Three: What are the biggest challenges that you currently face?

Our biggest challenges are two related problems: the invisibility of those with severe mental illness to those in power and the despair of reform-minded advocates in the face of the enormity of our task.

Watching those in charge of our state and national COVID response look right past our loved ones with schizophrenia despite the data was both infuriating and illuminating.

It revealed that our public officials and lawmakers, as well as many of our scientists, simply do not see those with severe mental illness. Or if they do see them, they assume that they are beyond help and it’s useless to invest in trying to change things for them. That’s exactly the opposite of what we’ve seen: a small investment of time and resources is life-changing for our loved ones with SMI and their families. Yet the tendency of those in power to overlook the most severely ill (whether intentionally or implicitly) is clear. This leads a lot of our advocates to feel demoralized and uncertain of whether their efforts make a difference. This is a challenge for all for all kinds of advocacy, but I think it is especially the case for those tackling our abysmal “system” of treatment for severe mental illness. It’s why it’s so important for us to come together as a community and support one another at our low times, just as much as to celebrate our victories.

Question Four: Why did you get involved in mental health?

There are several factors that came together to create a perfect storm that led me to Treatment Advocacy Center. The major factor is definitely my own family’s history of severe mental illness and my first-hand experience of the destruction it causes and the absolutely enraging inadequacy of what society makes available for our loved ones.

The impact on my family of nearly twenty years of inadequate care shaped my life and reality more than any other single factor.

My younger sister suffered through years of inadequate care and neglectful, nonsensical treatment decisions. I am a different person than I would have been if she had received appropriate medication and stabilized earlier in her life. It took over my parents’ lives and left them traumatized. It drained them of hope. But for us it goes back further than my immediate family, because my paternal great-grandmother also suffered from severe mental illness and its impact on my grandmother and her children was the major factor that shaped their lives. With effective treatment for a medical condition that neither my sister nor my great-grandmother chose, all of our lives would be completely different. It’s a stunning reality. My education is in psychology, law and human rights. I followed the work of Treatment Advocacy Center and Dr. Torrey for years as the only narrative capable of providing insight into the tragedy of my family’s multi-generational trauma. In hindsight, it seems like each step in my life, education and career brought me right to this specific work.

About the Author: (From TAC’s webpage.) Lisa joined the Treatment Advocacy Center in 2015, bringing many years of nonprofit policy and advocacy experience. Her prior work includes the representation of refugees seeking asylum in the United States and many years of experience as a litigator in the areas of human rights and civil liberties. Lisa received a master’s in law degree from the University of Oxford after earning a J.D. from Hamline Mitchell School of Law and bachelor’s degrees in psychology and English from Macalester College.

Next In This Series: Schroeder Stribling, President and CEO of Mental Health America. (I am posting responses based on the order that I received them. The views of the authors are their own.)

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.