Illustrations by Vlad alvarez
Keith Pettiford starts his night by greeting every staff member in the St. Francis Hospital Emergency Department. He knows their names, asks about their families, children and social lives. The affable 54-year-old has made twice-weekly visits to the ED every weekend for the last three months. He drops off his bag in a back corner, pulls out a thick pair of black reading glasses, a gift from one of the St. Francis ED doctors, and gets to work.
Pettiford is an engagement specialist for Brandywine Counseling & Community Services. During the day, he works as its liaison to the Delaware Division of Family Services, performing alcohol and drug assessments with DFS clients. Since late April 2018, he also spends his Friday and Saturday nights at St. Francis, ready to lend a helping hand to anyone ready to take it.
Pettiford opens an old laptop, pulling up a PDF showing a daily listing of bed occupancies at every detox and medication-assisted treatment facility in Delaware, obtained from the Department of Health and Social Services. It is a slow week and there are available beds nearby; if there were not, stabilized patients might be Ubered to a facility downstate or stay overnight in a temporary bed at a subsidized living facility until space opens.
At 2 a.m., just as Pettiford’s shift is ending, a patient comes in fading in and out of consciousness, still high and recovering from a bout of seizures. Pettiford waits for an hour for the patient to come down, dons his thick reading glasses and grabs a hefty packet of paper and enters the room. By alternating prods and encouragements, Pettiford teases out the patient’s history of drug use, habits and dependency. He asks the patient if he would like to seek treatment. He would. Pettiford asks why. “I’m tired.” The patient mutters. “I’m tired of doing this.”
Pettiford nods and marks down the answer on the thick paper packet, trying not to spend too much time on the pages of routine questions. “We just try to get as much information as we can at the current time. You know, enough that we can go ahead and refer him out to other services.”
Filling out the entire packet could take an hour. Pettiford is out in 15 minutes. The patient has requested a medication-assisted treatment facility, where he can receive comprehensive inpatient treatment for his addiction. Pettiford recommends him to a BCCS treatment facility, but it is up to the patient, who will be discharged in a few hours, to get there. Unlike detox facilities, intake for BCCS does not start until 7 a.m. Monday; when Pettiford leaves his patient, it is 3:30 a.m. Saturday.
It’s a familiar scene in emergency departments across the state. Delaware declared opioid addiction to be an epidemic in 2010, following the discovery that in 2009 more Delawareans died from accidental opioid overdoses than car accidents. By 2018, the death rate tripled to nearly one per day, while nearly 15,000 Delawareans sought treatment for substance abuse disorder—2,000 more than in 2017. Government and nongovernmental organizations have historically struggled to cope, each working autonomously to address the problem.
Lt. Gov. Bethany Hall-Long does her best to field questions. “My phone rings every day. I get calls from mothers and grandmas at 3 a.m. They don’t know where to go. People need help for someone who’s suffering not only from addiction but also mental health crisis,” she says.
In response, her office has created the Behavioral Health Consortium, an alliance of experts and lawmakers with the goal of creating “a streamlined approach to improving Delaware’s behavioral health system,” tying together existing organizations and resources into a coordinated effort for reform and improvement. Inspired by Delaware’s successful Cancer Consortium, the BHC was introduced by state Sen. Bryan Townsend and state Rep. David Bentz and signed into law in July 2017.
The BHC held its first meetings only a couple months later between experts and state officials, building a foundation for action. Then they opened the floor to the public. During those open forum meetings, nearly 600 participants generated more than 1,000 responses to questions about the state’s role in behavioral health issues. Those responses became the 117 actionable items of the 2018 Behavioral Health Consortium Three-Year Action Plan.
The action plan has three phases: harm reduction, stopping the pipeline and corrections reform. Each phase will take approximately one year and build upon the others over time. The responsibilities have been split up within the executive branch, as well as committees led by BHC members and partners.
The first phase, executed over the course of 2018, focused on the creation of an Overdose System of Care, bringing together frontline professionals and substance abuse care providers to engage rescued overdose victims and get them into treatment. In addition to carrying overdose “antidotes” like naloxone, emergency department professionals, EMS and law enforcement are connected with professional treatment providers and are being trained to better engage individuals and guide them into treatment. It is the first system of its kind ever implemented and represents massive cooperation between agencies.
These points of intervention and others act as entry points for Delaware’s new START initiative (Substance Use Treatment and Recovery Transformation), which provides a supervisory structure for individuals going through the substance abuse recovery system. Navigating that system, whether it be insurance, legal assistance or transitioning levels of treatment, is one of the toughest barriers for patients, many of whom are already struggling with the treatment itself. Those referred to START will be paired with “peers,” experts like Pettiford who have been through the substance abuse recovery system and are familiar with its workings. These peers track clients along their journey to recovery, providing guidance and assistance with medical treatment, legal assistance, as well as employment and housing. Since it launched in October 2018, more than 1,700 Delawareans have been referred into the program.
Both systems, however, require data. A lot of data. Until now, Delaware’s system of collecting information has been piecemeal, with individual organizations working with varying degrees of success. The Health Information Exchange, an information network that collects medical data on a state and national scale, excludes mental health data. Meanwhile, some mental health information, like Pettiford’s intake packets at St. Francis, still use paper and pen.
It’s up to Elizabeth Romero, director of the Delaware Department of Substance Abuse and Mental Health, to help synthesize that information. Romero, a self-described data geek, is no novice when it comes to building these systems; before her work at DSAMH, she built similar systems across the country at the Association of State and Territorial Health Officials and says that Delaware has some advantages. “It’s an amazing feeling to be a part of something where everyone’s trying to work towards a goal.”
Since the start of the START initiative, DSAMH and its partners have begun to digitize the documents previously excluded from the Health Information Exchange, including the files of many of Delaware’s behavioral health specialists. While individuals like Pettiford eventually digitize their information, a surprising number of records had been kept exclusively in physical form. This summer, after nine months of labor, nearly all the behavioral health records in Delaware hospitals will have been digitized and connected.
Illustrations by Vlad alvarez
Outside of the hospital system, much of the processed and digitized data is still spread out across different networks. Numbers for annual overdoses come from Emergency Medical Services response records. Opioid-related crime statistics belong to the Delaware State Police Fusion Centers, part of a law enforcement database working in concert with the Department of Homeland Security. Records of treatment at facilities are, for the most part, privately managed. An individual could seek treatment a half-dozen times without attending the same facility and have no cohesive paper trail detailing them all.
“A lot of our work is trying to get to that place of looking at our data,” says Romero. “A lot of our providers look at data very differently, so we’re trying to get that level set.”
Limen House, an in-house, long-term recovery program, is looking for a more definitive metric. It has initiated a study to better define critical terms of recovery such as “success” and “medical necessity.” These terms are central to the licensure of recovery facilities in Delaware, and Limen House says that legal ambiguity has led to a lack of critical care at those facilities.
State Sen. Stephanie Hansen, the Delaware Senate’s representative to the Behavioral Health Consortium on addiction-related issues, explains the challenge. “Does (success) mean you’ve been in recovery for X period of time? Does it also mean you have a job? Does it mean you’ve resolved all your legal issues and don’t have any? What does that look like?” And that is a problem: A lack of licensing regulation means a lack of accountability in a high-stakes medical field.
Insurance companies present the same problems in their interpretations of “medical necessity.” While Delaware law ensures access to “medically necessary” procedures and services, insurance companies can interpret that term almost at will. Protected inpatient treatments can last as few as 10 to 14 days, leaving patients stranded by the process at their most vulnerable moment.
In response, Limen House has begun a partnership with Leadership Delaware’s Community Organization Collaboration to formalize methods for tracking graduates of Limen House programs and measuring success rates and recidivism. Hansen, who keeps close ties to Limen House, supports the measure.
“If the insurance companies can’t tell me what the definition is, then we’re gonna tell them what it is,” Hansen says. “When we define success, each one of these steps is going to be part of the definition of medical necessity that we’re going to require them to cover.”
In addition to Limen House’s study, Hansen conducts her own investigations. She anonymously escorts individuals seeking treatment to facilities and helps them through the process as they register. Most facilities, she says, don’t take much notice, and she’s able to get an inside look at what the process is like for her constituents and other Delaware citizens.
On official visits, she will bring along volunteer and family friend Cody Donovan, a veteran of Delaware’s substance abuse rehabilitation centers. Hansen calls Donovan, who has been clean for two years, an invaluable part of her efforts.
After every tour, Hansen will convene with Donovan in the parking lot to share insights on the facility. In his first seven months, Donovan attended eight to 10 tours, using his personal experience to help reveal where programs might be underperforming. It’s an important job, because underperforming facilities gain bad reputations, deterring treatment. “They become those houses in the neighborhood that people are afraid of,” says Hansen.
Donovan is part of a wave of survivors and affected families working to make a difference. Among the survivors are Don and Jeannie Keister. Their son, Tyler, died of an accidental opioid overdose on Christmas 2012. Just months later, the couple founded atTAcK addiction, an action and advocacy nonprofit. According to Jeannie, they were driven by a need to make their voices heard. “We felt that we needed to speak up about this because we were seeing it happen to way too many people, but everyone was being silent about it.”
They began by holding meetings in the library of Caravel Academy, where Don is headmaster. That was where they met David Humes, another grieving parent. Humes’ son, Greg, had died from an accidental overdose seven months before Tyler. When they met in the winter of 2013, Humes was a man on a mission.
After Greg’s death, one of the first responders had remarked to Humes that if one of Greg’s friends had had access to Narcan, the brand name for naloxone, or if there had been a 911 good Samaritan law, his son might still be alive. Humes was determined to make sure that everyone else’s child could have the lifesaving opportunities unavailable to his son. The Keisters were on board.
Illustrations by Vlad alvarez
Within months, atTAcK addiction brought a 911 good Samaritan bill to the Delaware Legislature. The measure, which granted amnesty to anyone who called emergency services to report an overdose, received overwhelming bipartisan support and was passed into law in July 2013.
Since then, the group continued to work closely with legislators, offering up research and sometimes even fully written bills. AtTAcK addiction also funds and helps run Narcan training sessions, hosts support groups for families of those lost, and organizes a wildly popular 5K fundraiser every year on Tyler’s birthday. In 2019, the race reached a new peak with more than 3,200 runners.
After a long string of legislative victories, including legislation to get naloxone into the hands of first responders and other emergency personnel, atTAcK addiction suffered its first legislative defeat. A 2018 bill seeking $4 million for the nation’s first public recovery high school program failed to pass. The program would have operated out of an existing facility and provided a separate education for Delaware high schoolers who have completed rehab programs and are looking to continue their education. Currently, these teens are placed back in their previous high schools unless they can attend one of America’s 40 privately owned recovery high schools.
That was not the only atTAcK addiction-supported legislation that failed in 2018. Two “impact fee” bills, which would have used fees on opioid sales in Delaware to create a fund to treat addiction, failed to win adequate support. Sponsored by former state Rep. Deborah Hudson, a Republican, and Hansen, a Democrat, neither bill made it to its respective floor. As of this writing, Hansen’s 2019 impact fee bill, SB 34, has been passed in the Senate and is headed to the House.
A lot is being invested in Delaware’s Behavioral Health Consortium’s Three-Year Action Plan. In addition to $25 million in taxpayer funding, the overview released by the lieutenant governor’s office lists dozens of offices, departments, committees, and commissions, as well as organizations like the University of Delaware, which will all have roles to play in the ongoing effort.
The goal of the START initiative, though, and to an extent DSAMH as a whole, is to help guide people through the mass of raw data to the services they need. “We’re really excited,” says DSAMH’s Romero about the rollout of the action plan, “because this will be an opportunity to ensure that people are not getting lost in the facts, that providers are not wasting time making millions of phone calls in order to find facility or treatment options for their clients, and really be able to move people faster into treatment.”
The stakes are high. The patient that Keith Pettiford recommended to Brandywine Counseling showed up at BCCS that Monday morning, but many do not.
According to Pettiford, only about half of those he has engaged with at St. Francis make it into counseling. Some give partial information but refuse care, while others agree to go to care but don’t show up. Pettiford often sees the same faces and tries to follow up with them whenever possible.
And as the three-year action plan unfolds, people like Pettiford and Donovan continue to work within the substance abuse disorder community. For them, their efforts are part of their own ongoing journeys of recovery. “This is what I’m going to do, and this is what helps me help them,” says Donovan. “I’m not promised tomorrow. Nobody else is. I have goals, but if I stay in today, I know I can continuously work toward them.”