With the presidential race well underway, we at the National Shattering Silence Coalition (NSSC)—those living with serious mental illness (SMI), family members, treatment providers of the seriously mentally ill, and their allies—were hopeful when we heard candidates had responded to a survey on mental health policy. That survey, which the coalition “Mental Health for US” sent to thirteen leading presidential candidates, provided an opportunity for each candidate to present their positions on mental health and addiction.
But when we read the survey questions and the candidates’ responses released in August, we were disheartened to learn that those with serious mental illness were ignored. Some candidates neglected to respond to the survey at all, indicating they do not consider mental health policy and the needs of those with serious mental illness important issues. Both the survey and the candidates’ responses overlooked many of the most obvious problems with our broken mental health system.
In their survey responses, some candidates focused on anti-stigma campaigns, investing in community mental health, suicide prevention programs, mental health parity, and integrating mental health services into schools. These programs do little to save the lives and health of the seriously mentally ill. Neither these programs nor Medicare for All would eliminate the most significant barriers to treatment.
The NSSC has solutions to address these barriers to treatment, which we outline in our Points of Unity. In July, we asked presidential candidates where they stand on these issues and requested that they sign our Serious Mental Illness Points of Unity Pledge of Allegiance For Presidential Candidates. We sent the pledge to the top six Democratic presidential candidates—Joe Biden, Elizabeth Warren, Bernie Sanders, Pete Buttigieg, Kamala Harris, and Beto O’Rourke—along with President Trump and Governor Bill Weld. Not one of these eight candidates has responded.
The Impact of Serious Mental Illness
Serious mental illness is a medical illness that needs treatment. But right now in the U.S., of the estimated 54.6 million family members of those with SMI—22% of all eligible voters—up to half of them are unable to get their loved ones into treatment, even when they desperately need it.
A staggering 1.8 million people per year who suffer from SMI are booked into jails when they should be in hospitals. While the vast majority are arrested for misdemeanors such as trespassing or disorderly conduct caused by their illness, psychosis causes violent behavior in some individuals with untreated serious mental illness. Too many are incarcerated because our mental health system failed to provide treatment that could have prevented these actions.
Our family members are not getting the help they need because of the lack of understanding of SMI by far too many in government and their failure to understand that the #CostOfNotCaring far exceeds the cost of caring for this vulnerable population. Unfortunately, our presidential candidates do not appear to understand the importance of addressing this humanitarian crisis. We are more than ready to help enlighten them.
The Most Pressing Barriers to Treatment of the Seriously Mentally Ill
Anosognosia. Probably the greatest misunderstanding among policymakers about SMI is the assumption that everyone who needs psychiatric care has the capacity to independently seek and adhere to treatment. Those of us who have a seriously ill family member or regularly care for them professionally know all too well that those with schizophrenia or bipolar disorder often do not realize they are ill. This lack of insight is called anosognosia. According to the Treatment Advocacy Center, anosognosia occurs in 50% of individuals with schizophrenia and 40% with bipolar disorder. Anosognosia is the number one reason why people refuse treatment.
The standard of “danger to self or others.” Family members desperate to get help for their loved ones are forced to wait for them to become “a danger to self or others” before they can attempt to get help because involuntary commitment laws are so stringent. By the time our loved ones meet this standard, either tragedy has already struck or they are so ill that they become combative when the police are called to assist in getting them to a hospital. They are likely to be arrested before or after being taken to the hospital, or even shot dead on the scene. This inhumane practice of allowing people to deteriorate until they become threatening or violent must end.
Shortages of psychiatric beds, exacerbated by the IMD exclusion. Even those who do seek help on their own are often refused treatment. Too often, people in a mental illness crisis wait for days—even weeks—in emergency rooms because of psychiatric bed shortages. The number of psychiatric beds declined by 97% between 1955 and 2016. These closures have been driven in large part by a discriminatory law known as the IMD (Institutions of Mental Disease) exclusion, which bars Medicaid funds from being used in the treatment of adults (persons aged 22 through 64) in institutions of mental disease facilities having more than 16 beds for the specific treatment of mental disorders.
HIPAA Handcuffs. A frequent frustration to those of us who are battling for treatment for our loved ones is what we call the Health Insurance Portability and Accountability Act (HIPAA) handcuffs. Hospitals, prisons, and mental health professionals apply HIPAA privacy laws so rigidly (and often incorrectly) that families often can’t even ascertain their ill family members’ whereabouts, never mind participate in the treatment of their dangerously ill relatives. When our SMI family members over the age of 18 go missing, hospitals and shelters often won’t tell us where they went or even whether or not they are present. Doctors won’t tell us which medications have worked or have been prescribed. A person with anosognosia who doesn’t believe they are ill, or someone suffering from psychosis, is not likely to fill out a HIPAA release form, which would allow healthcare providers to share information with family members. Institutions take advantage of this circumstance to protect themselves from scrutiny and liability.
This issue was supposed to be resolved with the passage of the 21st Century Cures Act in December 2016, which required the Secretary of Health and Human Services (HHS) to issue guidance clarifying the circumstances under which healthcare providers and families can share and provide protected information about a loved one with SMI. It also required the Secretary to develop model programs and training for health care providers to clarify when information can be shared and training for patients and their families to understand their rights to obtain treatment information.
In December 2018, the HHS Department of Civil Rights issued its response to the required changes. This new guidance has not worked for family members and caregivers who are still being shut out when attempting to access care on behalf of their loved ones. The rules for when providers can share information are too ambiguous in the case of people suffering from a serious mental illness. Family members must be allowed access to their loved ones’ information when they are in the throes of psychosis, severe mania or depression, and when they are suffering from anosognosia. Family members who are the primary caregivers of someone with SMI also need to be given access to the treatment team and kept informed of current medications and appointments.
The presidential candidates’ responses reflected no awareness of these problems. The candidates didn’t seem to know that some people with mental illness need hospitalization as well as the informed help of their family members. Instead, their responses ignore the needs of the seriously mentally ill, perpetuating a broken system that is failing those living with SMI and putting them on the path to homelessness, incarceration, or death.
Our Points of Unity, offering clear solutions needed to provide compassionate care for those with SMI, are described below. To the presidential candidates, we are waiting for your response and your pledge to help those with serious mental illness and their families. How will you help fix the broken mental health system and enable our loved ones with serious mental illness to receive the treatment they need and deserve?
NSSC’s Points of Unity
As a nonpartisan coalition of individuals and organizations from diverse political, economic, and cultural backgrounds, we agree to the following shared values and principles of unity:
To all reading this blog post, please, if you care about those living with serious mental illness -- whether you are someone living with serious mental illness, someone who cares, a family member/caregiver, or a mental illness professional -- join us. It's free to join! We need your voices.