Our society has long needed to rethink our mental health crisis response system — the very system that now puts the safety and lives of people with psychiatric disabilities at risk. One recent example: the murder of Jordan Neely, who was reportedly experiencing a mental health crisis, on New York City’s subway.
As the executive director of the new Center for Racial and Disability Justice at Northwestern University’s Pritzker School of Law and someone with multiple disabilities, including psychiatric disabilities, I want to suggest some steps we must take today to shift mental health crisis response and prioritize the safety and dignity of people with psychiatric disabilities (the preferred term, rather than mental illness, among disability rights advocates).
I want to emphasize three things: Mental health personnel, not armed law enforcement, should be the default first responders in mental health crisis situations; we need better and more comprehensive data collection; and people with psychiatric disabilities need to be at the forefront of decision-making around crisis response paradigms.
These recommendations are part of a broader conversation around these issues that demands urgent action.
988 crisis lifeline has flaws
Law enforcement is often the first to respond to mental health crises in the U.S., but this needs to change because this type of response often leads to police violence. In fact, 50% of people killed by law enforcement have a disability — primarily a psychiatric disability — with Black, Indigenous, and other people of color at the greatest risk.
One purpose of the national 988 Suicide and Crisis Lifeline — a 24/7 call, text, and chat service — is to divert mental health crisis calls away from 911 and law enforcement to mental health workers. But the system has not fundamentally transformed the response process.
Instead of serving as a trauma-informed service administered by mental health providers, 988 frequently still leads to interventions by law enforcement and non-consensual treatments.
For years, advocates and organizations led by people with psychiatric disabilities have stated that coercion and force do not work in mental health crisis response situations. We need new ways of ensuring that mental health providers can respond to these situations and reprioritize consent.
But this cannot be done effectively without the right data.
It’s unclear just how often police are called to respond to situations that others could manage more effectively, and we need better ways of parsing this data. Some 988 Lifeline Performance metrics are available online, but they are insufficient and do not include any information about referral source, reason for call, outcome, and quality and user experience.
Without comprehensive data, it is impossible to properly evaluate the effectiveness of 988 implementation. If we don’t know who is making calls, why, whether the caller is being connected to services in a safe and efficient way, and what happens after each call is made, we cannot determine whether a program is effective.
Requiring more comprehensive data collection and transparency would help us answer these questions and design more effective solutions.
Listen to those with disability
The Community Emergency Services and Supports Act (CESSA), an Illinois law signed in 2021, requires 911 to coordinate with mobile crisis teams designed to respond to mental health crisis situations. The law also created advisory committees to facilitate logistics that would ideally improve response paradigms.
This was a step in the right direction, but unfortunately, the leaders of the advisory committees have not prioritized the voices of people with psychiatric disabilities — which results in the development of poor strategies and guidelines.
For example, CESSA’s Advisory Committee created and approved an arbitrary risk matrix for CESSA-related calls (see chart in this recording) that encourages calling 911 and dispatching law enforcement, and provides police with a significant amount of authority in emergency calls related to mental health.
But this contradicts what CESSA intended to accomplish. To help remedy these problems, I suggest that statewide advisory boards should not only include people with psychiatric disabilities in planning and decision-making, but also center their voices and treat them as experts in conversations about services like 988, CESSA and other mental health programs.
Policymakers should look to organizations like Mad in America and the National Coalition for Mental Health Recovery — which are led by people with disabilities — as models.
Adopting these three measures is a critical start to a safer and more equitable mental health crisis response system, both in Illinois and nationally.
Jordyn Jensen, M.Ed., is the executive director of the Center for Racial and Disability Justice at Northwestern Pritzker School of Law.
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