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A Letter From the Editor: What’s Next? 988, Covid, and Sustainability

988 Must Work

A wild cranberry-colored line immediately appears as the liquid moves along the strip. No need to wait 30 seconds, let alone the 15 minutes stated in the directions—an expletive slips between my teeth. “What?” my son calls out. “What is it? Do I have Covid?” 

I enter his room wearing two masks—I couldn’t find the heavy-duty 3M respirators I’d tucked away for just this occasion (where did I put them?), and his eyes fill with tears that threaten to pool over in tiny streams and tug at my will to isolate him. “Can I have a hug?” he asks. Pulling him in tight, I want to take off my doubled-up masks and breathe him in, that familiar scent of shampoo mixed with the saltiness of a day in the life of an eight-year-old, but I stop short. 

“Good night,” I say and tuck him into bed. “Like a burrito,” he instructs. He coughs, rolls on his side, and I fold the blankets around him. I turn off the light, and guilt permeates my thoughts. Did I miss the early signs? Could other people get sick because of me? Who do I need to text, call, and email? It’s nighttime. Should I tell people now or wait until morning?

When he’s asleep, I go back in with the humidifier and then poke around the house, looking for AAA batteries for the walkie-talkies I’m convinced might make quarantine kind of fun. I smile, envisioning him sharing his latest thoughts punctuated with an “Over and Out” at the end.

He’ll be fine, I tell myself. After all, it’s fall 2022, not spring 2020. We are far from pioneers in this landscape.

More than 2.6 years into the pandemic, the United States has had over 97.7 million confirmed Covid cases and over 1.07 million Covid deaths. However, it’s not the only public health emergency the U.S. faces—we’re also experiencing twin mental health and substance use epidemics. Both predated but worsened with the pandemic. 

When I launched #CrisisTalk in May 2019, there was no Covid and no 988, though there were hints of a potential nationwide three-digit number. In my new position as Chief Content Officer at RI International, David Covington, the company’s CEO, tasked me with developing and running a blog for Crisis Now. My job was to ensure it didn’t become “the virtual equivalent of a dusty report on a shelf.” The wheels of change were already turning, but we didn’t know the massive shift in challenges and, correspondingly, the cultural and legislative landscapes around the corner. Two hundred articles later, we’ve tried to track these changes along the way and highlight innovations and a diversity of voices in the crisis conversation, hoping to elevate them so that legislators, a growing part of our readership, have ready access to many needed perspectives. 

One of my first #CrisisTalk interviews was with Dr. John Draper, director of the National Suicide Prevention Lifeline. He spoke of how a nationwide three-digit number connecting people to the Lifeline would bring about “real parity.” “People phoning would give us the data we need in terms of caller expectations from the mental health system,” he said, “which will increase voice representation and help tailor demands on policymakers to respond to these needs with adequate behavioral health resources in the communities callers live.” He asked his teenage daughter, who has a history of anxiety and depression, what impact she thought a nationwide three-digit number could have. She told him people would finally understand mental health crises are real and require a different response than police or emergency medical services. By creating a cultural shift, she said, “it [the three-digit number] would likely do more than anything else to erase stigma against mental illness…”

Six months later, on November 19, 2019, the Federal Communications Commission moved to establish 988 as the national number for mental health and suicide crises. By July 2020, the FCC passed rules that Chairperson Ajit Pai said would make “988” the “911” for mental health emergencies. In October 2020, the landmark National Suicide Hotline Designation Act of 2020 became public law, breaking new ground by allowing states to implement a monthly telecom customer service fee to pay for 988-related services. 

Within the first year of #CrisisTalk, the world was amid a global pandemic. When Covid hit the U.S., the ground shifted under us. What we once took for granted was no longer what we knew to be true. Suddenly, we all experienced, to varying degrees, how life could change in a moment. We didn’t know what was next and if and when we’d return to life as it had been before. 

Life as we knew it was turned on its head. 

Like many parents, I had to pivot to working from home with children and quickly became my then six-year-old’s untrained, in-person teacher. Yet, I knew we were amongst the lucky ones. In New Orleans, the virus hit us hard and fast. When communities across the nation still hadn’t yet felt the pandemic’s wrath, many New Orleanians lost friends and family members. They visited with loved ones they’d never hug again through panes of glass and on FaceTime. Some of my children’s classmates left school in March 2020 with two parents and returned the following year with one.

The twin mental health and substance use crises have worsened as the pandemic continues. According to the Centers for Disease Control and Prevention overdose deaths jumped by 30% between 2019 and 2020. And while overdose deaths increased by half that in 2021, those from synthetic opioids, psychostimulants, and cocaine have continued to increase. Mental health challenges are also on the rise, with young people particularly at risk. The CDC’s 2021 Adolescent Behaviors and Experiences Survey revealed that 44.2% of U.S. high school student participants experienced persistent sadness or hopelessness in the past year. At-risk students had even higher percentages. Data from the Trevor Project’s 2022 national survey on LGBTQ Youth Mental Health highlighted that nearly 20% of transgender and nonbinary youth, ages 13-24, attempted suicide in the past year.

The pandemic highlighted racial disparities, and the murder of George Floyd by four Minneapolis police officers in 2020 garnered long-needed national attention on racism and lethal police interactions. Rochelle Head-Dunham, M.D., told me the collision of these crises put American society at the precipice of change. The convergence, along with Covid racial disparities, pressed society to a tipping point where non-Black people not only understood racism exists but also how it permeates all systems, including healthcare, education, and the legal system. Finally, said Dr. Head-Dunham, people were standing up against it. 

According to November 2022 data from the Washington Post’s police shooting database, of people killed in the United States by a police officer in the line of duty since January 1, 2015, 22% were Black, and 15% were Hispanic. 

The Washington Post database also highlights that 21% of people killed by a police officer in the line of duty were identified as having a mental illness. The lens that law enforcement isn’t the correct response for people in a mental health or substance use crisis isn’t novel. Still, the increased focus on disparities has placed pressure on communities to address them and develop comprehensive crisis systems (as defined in SAMHSA national guidelines for mental health and substance use crisis care), interconnectivity between systems, and diversion from 911 and law enforcement.

By 2021, ‌kids in my community were struggling. I reached out to friends in Maryland, Washington, D.C., Virginia, California, North Carolina, and New York to ask what they were seeing. Perhaps what was happening around me wasn’t representative of what was happening elsewhere. “No,” said my friends, “the kids aren’t okay.” I reached out to Emily Moser, director of YouthLine Programs at Lines for Life in Oregon, which provides peer-to-peer support nationwide to young people through phone, text, chat, and email. She sent me data showing middle schoolers ages 11 to 14 increasingly reported mental health concerns or isolation and loneliness during the pandemic. I compared this with McKinsey & Company’s Center for Societal Benefit through Healthcare data, which illustrated these same ages were among the group, ages 0-14, that had experienced the largest decrease in behavioral health services use. 

Throughout the pandemic, young people ages 11 to 24 have continued to contact the peer-to-peer line about mental health concerns—the percentage jumped from 17% (March 2020 – January 2021) to 35% (July – September 2021). As of June, the percentage was 36%. And even though kids have returned to the classroom, the percentage of youth reporting feelings of loneliness and isolation as their primary concern grew slightly from 12% to 14%. 

The pandemic has pressed hard on pre-existing pressure points in our public health system, putting up a mirror to what’s broken in our society and systems. However, it’s also fostered something else—a noticeable increase in concern for others. When young people called YouthLine, they often reported family issues. That’s typical. However, what was unique is that they weren’t just calling about themselves but about their parents. “Not to discuss an argument they’ve had with a parent,” said Moser, “but because they’re concerned about them.”

Stephanie Woodard, Ph.D., told me in November 2020 that suddenly, the general population had more awareness of mental health and substance use challenges. She’s the senior advisor on behavioral health at the Nevada Department of Health and Human Services. The state experienced a surge of Nevadans signing up to learn psychological first aid through the American Red Cross.  

In October, lobbyist Sarah Corcoran shared with me that even before Covid, there was a notable shift in mental health and substance use focused bills. However, the pandemic was the national crisis that spotlighted behavioral health. “The pandemic triggered this watershed moment,” she said, “making it impossible to deny that people needed more support.”

It’s unclear how far 988 legislation and implementation would have gone without the pandemic, but we know the general population has more awareness of mental health and substance use challenges than ever before, which means legislators do too. There’s now short-term funding to support developing and scaffolding crisis systems. What’s missing, though, is a viable sustainability plan. 

Most states haven’t implemented a monthly telecom customer service fee to support 988-related services that the National Suicide Hotline Designation Act of 2020 allows. A fee would give states a means for sustainable funding. However, according to the National Alliance on Mental Illness’ 988 Crisis Response State Legislation Map, only six states have passed service fee legislation—California, Colorado, Connecticut, Nevada, Virginia, and Washington State. 

In interviewing people who took part in developing and writing state 988 implementation legislation, I quickly learned the hurdles bills with telecom fees faced. For example, Jen Stuber, Ph.D., who helped craft Washington State’s 988 implementation legislation, told me telecom industry members pushed against the bill. They wanted the fee allowance in the National Suicide Hotline Designation Act of 2020 to be narrowly interpreted and only go toward direct call center costs. However, the act itself is far broader, allowing states to use the fee to cover costs to (a) ensure efficient and effective 988 call routing to an appropriate crisis center and (b) personnel and provide acute mental health, crisis outreach, and stabilization services by directly responding to the 988 hotline. 

People experiencing mental health or substance use crises need the same parallel level of support as those in physical crises. Yet, law enforcement continues to be the primary responder and the emergency room the primary provider for mental health or substance use crises. Adults often have to wait hours, even days, in the emergency room for psychiatric care. Children typically wait even longer. We deserve better. Our families deserve better.

As Congress and states move toward what’s next, I hope leaders not only push for telecom fees but are having long-overdue conversations with Medicaid, Medicare, and private commercial insurers. Equality in reimbursement between physical and mental and substance use healthcare is critical not only for crisis system redesign and implementation but also to maintain our newly scaffolded or expanded crisis systems so they don’t become mere shells of what they could have been.