The mental health system that failed my son is fixable
Many warranted worries kept me up at night while my son, Calvin, was still living. Would he kill himself today? Would he land back in jail — or disappear? Would I need to prove to someone that he was dangerous, so he might get another short stay in a locked facility?
Typical parent anxiety about schoolwork, careers and relationships was overcome by daily threats to my child’s survival. When he died from suicide at 23, he was disabled and dependent on government money for subsistence in a rundown basement apartment on Capitol Hill.
Our sad story is normalized by a system structured for poor outcomes.
Most cycle through hospitals, jails and homelessness untreated
Although severe mental illness is treatable with modern medications and therapies, most people with psychotic disorders cycle through hospitals, jails and homelessness, untreated and getting worse while public service agencies burn through their budgets chasing crisis after crisis. Families are pushed to the sidelines by systems that prioritize patient confidentiality over good care. Meanwhile, untreated psychosis often leads disoriented people into the criminal legal system; the largest “group home” for this population is the county jail.
After watching my only son’s free fall through a safety net strung with punishments and holes, I feel the system looks surprisingly fixable. What we lack as a nation are willpower, a commitment to basic human rights and a system focused on outcomes.
I envision a practical solution that addresses all of these. My concept starts with a template from special education. Although imperfect, our special education system is accountable to support the individualized needs of students with disabilities. Federal grants require schools to monitor progress and report their outcomes.
We need a federal program that similarly organizes grants for public health.
We need accountability for evidence-based, whole-person care. Agencies and facilities should be required to track and report real recovery outcomes: Have clients stabilized, settled into reasonable housing and found something meaningful to do? These are basic measures of life, liberty and pursuit of happiness, yet the system isn’t built to make them consistently attainable.
Instead, individuals with the most complex conditions are frequently denied care because they are so sick. A comment in the Dec. 1, 2022, Washington Law Review discusses the problem of people being denied care for being “too acute.” The review points out that those who get beds often don’t get better. I find it ironic that the proposed solution is for the medical system to take even less responsibility by reducing access to inpatient treatment. Abandoning very ill people to the streets is an obvious and inhumane failure of the status quo.
U.S. schools often denied education for children with disabilities until 1973, when Section 504 of the Rehabilitation Act first required schools to serve students with a disability, “regardless of the nature or severity of the disability.” Now special education services are required to elicit measurably decent outcomes to meet the federal standard for a Free Appropriate Public Education. Although it’s imperfectly applied and allows for biases, FAPE creates a structure for accountability.
We can build a public health system to seek out and care for people with severe mental illness. We can require our health care system to keep track of these people and keep records about how they do in the long term. If we measure whole-life outcomes, we will get better at what we track. If well-trained teams are funded by federal grants that require them to get good results, the system will shift. Better is possible. We need willpower, a commitment to basic human rights and a system focused on outcomes.
ABOUT THE AUTHOR: Jerri Clark founded Mothers of the Mentally Ill and works for the national non-profit Treatment Advocacy Center. Her son, Calvin Clark, died March 18, 2019.
This OP Ed first appeared in the