Renee Watts describes her younger brother – Stephon – as nerdy and God-fearing.
“He enjoyed talking to anyone who would listen about computer games, philosophy, and love having conversations about the Bible,” she told Illinois lawmakers at a recent hearing.
Stephon had Asperger’s syndrome, which is on the autism spectrum. When he was struggling, his medical providers and school counselors instructed his family to have the teen taken to a nearby hospital, transportation that required an ambulance and law enforcement, Watts said. On one occasion in 2012, Watts said her father called the police. Three officers entered the house to check on Stephon. He appeared to have a butter knife and ran for the door. The officers shot and killed him. He was 15.
For the last few years, disability activists and Watts’ family have been pushing for the creation of a statewide emergency response system, separate from law enforcement, to serve people in mental health or behavioral crises. They cite studies that people with mental illness are needlessly sent to jail or emergency rooms, or worse, shot and killed by police when they seek emergency help.
With a new number for the national suicide prevention hotline coming online in 2022, more federal funding flowing to states for mental health services and rules recently approved by the Illinois legislature, Illinois is starting to build that system.
Renee Watts said her brother’s story would have ended differently if the proposed crisis response system were in place.
“Stephon would have been met with a mental and behavioral response team instead of the police,” she told lawmakers. “I'm here to ask that you please give our police and our community a more effective and life-saving option.”
Federal Support
The proposal at the Illinois statehouse builds on changes coming to the national suicide prevention line. Citing rise in suicide rates, the Federal Communications Commission is requiring telecommunications companies to create by July 2022 a three-digit emergency number, 988, which would connect callers to a crisis call center based on location.
The existing National Suicide Prevention Lifeline is a 10-digit number — 1-800-273-TALK, and difficult to remember in times of crisis, advocates say. While it has seen a rise in calls in recent years, funding has declined and some centers have closed .
Federal and state governments, and mental health advocates want to use the number change as a catalyst to build an emergency response system for people who are suicidal, or experiencing a mental or behavioral crisis.
“The current approach to crisis care is patchwork and delivers minimal treatment for some people,” reads “Crisis Services Meeting Needs, Saving Lives,” a report from the federal Substance Abuse and Mental Health Services Administration (SAMHSA). “While others, often those who have not been engaged in care, fall through the cracks; resulting in multiple hospital readmissions, life in the criminal justice system, homelessness, early death and suicide.”
The report outlines an approach for states to develop a “comprehensive and integrated crisis network” built on three pillars: statewide or regional call centers that can provide risk assessment and care coordination in real-time; 24/7 mobile units that can reach an individual in crisis in their home, workplace or other setting in a timely manner; and crisis stabilization centers that provide short-term care.
The Illinois Department of Human Services is “working on plans to strengthen the community crisis continuum,” using the SAMHSA report as a roadmap and money it received from the federal government earlier this year, according to IDHS spokesman Patrick Laughlin. The federal agency gave an additional $35 million to states specifically to plan for a new crisis system. Illinois received about $1.5 million, and will use another $25 million in federal money awarded during the COVID-19 pandemic, according to Laughlin.
IDHS recently closed a call for proposals to begin setting up mobile crisis response teams around the state, which boasted $35 million available in state and federal money, though Laughlin said the final funding amount will be determined when grants are given. The state agency is also convening a group of leaders from the state’s current crisis call centers and mental and behavioral health providers to plan for the 988 implementation.
Emergency Service Coordination
The statehouse proposal Watts testified for, the Community Emergency Support Services Act (CESSA), lays out rules for how other emergency responders, including 911 dispatchers, police and emergency medical services, must coordinate with the new crisis response system. It’s also very specific about the goal: divert as many people as possible from jail and emergency room care — currently the most widely used options for those in crisis.
“It's really good to see support at this time, but it's just long overdue,” said Candace Coleman, a racial justice organizer with ACCESS Living in Chicago. “We're just constantly seeing reminders of how legislation like CESSA could be very supportive of folks in the community.”
Coleman leads a group of young, mostly people of color with disabilities — Advance Your Leadership Power. They’ve been working for the last four years to convince lawmakers of the need for a separate emergency system for those in mental or behavioral crisis.
The system is modeled after CAHOOTS (Crisis Assistance Helping Out On The Streets) in Eugene, Oregon, a mobile crisis intervention team that has been in place for more than 30 years. Coleman said elements of the program that she found most appealing were that the team was integrated into the 911 response system; it brought services directly to people instead of having to transport them to the hospital to receive care; and that it diverted people from jail.
“A lot of this is literally health care, or care,” Coleman told NPR Illinois. “And it shouldn't be tied to the criminal justice system, if it doesn't apply to it.”
The statehouse proposal sets up regional commissions, divided by the state’s seven Emergency Medical Services regions, to advise on protocols of how and when 911 dispatchers should send calls to the 988 crisis centers, how to involve law enforcement, and what training responders should have, among other considerations.
“People experience some violence, they call (911) and you get a cop, or if you are having a fire, you get a firefighter,” said state Sen. Robert Peters, a Chicago Democrat who is cosponsor of the bill. “And when you're going through mental trauma and a mental health emergency, you should get a mental health professional.”
Law Enforcement Response
The Illinois General Assembly approved Peters’ bill without opposition, and it now heads to Gov. JB Pritzker for his signature. In legislative hearings, law enforcement groups expressed qualified support for the proposal.
Jim Kaitschuk, executive director of the Illinois Sheriffs’ Association, told lawmakers that he sees a place for mental health responders in easing the burden on law enforcement in responding to situations they’re not equipped to handle.
“We are expected to do an awful lot of things for an awful lot of people. And sometimes… we may not always know what we're getting into too,” Kaitschuk said. Still, he said he opposed earlier provisions of the bill that barred police from being on the scene with mental health responders. He worried about situations that turn violent, and police couldn’t respond quickly enough.
But Coleman countered that police presence can add stress and anxiety for some, particularly people of color, who are in crisis, and can escalate those situations. She said the focus on the “most extreme” cases where there is violence, which statistically don’t happen as often, is frustrating. It can also miss a bigger opportunity: creating options for care for people who need it before law enforcement is ever needed.
“This is an added system,” Coleman said. “Mental health, at least for us, is not a crime. We think that legislation like CESSA being put in place can take away that stigma around mental health as a crime and allow for more wraparound services for people with mental or behavioral health support.”
The proposal now says law enforcement can be on the scene, but out of sight of the person receiving care when mobile crisis teams respond.
A crisis response system will take time to build in Illinois, but at least some of the timeline is in place. IDHS is working on implementation of the 988 system by July 2022, while its Division of Mental Health is reviewing applications for grant money to create the mobile crisis response teams. If signed by the governor, the CESSA Act will require regional groups to develop the protocols for crisis call centers and responders by July 2023.
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