The odds are in our favor
A year of engagement journalism in service of the community of people in recovery from substance use disorders.
We hear about addiction a lot in the headlines lately, and with good reason. Life expectancy in the United States dropped three years in a row from 2015 through 2017. The leading causes, dubbed “deaths of despair,” were accidental overdose, alcoholism-related diseases, and suicides. The opioid overdose crisis is just one aspect of a larger national epidemic of addiction.
It may surprise people to learn, then, that most people with a substance use disorder do recover. The adage that “addiction is a fatal disease” is often used to appropriately underscore the seriousness of the problem, but it obscures the fact that the prognosis is by no means terminal. According to the 2016 Surgeon General’s Report on Alcohol, Drugs, and Health:
“Despite negative stereotypes of “hopeless addicts,” rigorous follow-up studies of treated adult populations, who tend to have the most chronic and severe disorders, show more than 50 percent achieving sustained remission…”
In fact, one in ten adults in the United States is in recovery from a substance use disorder, according to a national survey from the Offices of Addiction Services and Support (OASAS) of New York State. That means that there are approximately 25 million people in the U.S. who have survived this epidemic. We need their insights now more than ever.
The community of people in recovery has been asking journalists to listen and report on the fact that survival and recovery is entirely within reach, even in the most severe cases. Only 10 percent of the estimated 21.7 million people in the United States who need treatment for a substance use disorder receive proper care. Stigma and lack of awareness of effective treatment options are the two main barriers faced by most people who need treatment.
Personally, I am acutely aware of how critical it is to look at the solutions — not just the problem — because I am in recovery from a substance use disorder. No matter who you are or how you arrived the jumping off point, committing to getting help for an addiction feels like the greatest leap of faith you have ever taken. I wish that I had known at the beginning of my own journey that the odds are in my favor.
And, there is a lot of good news coming out of the recovery community right now. There has been a groundswell from advocates, professionals and people in recovery in recent years to implement policy that supports sustainable success in recovering from substance use disorders. One of the most effective approaches has been shown to be peer support. This is evidenced both by the success of AA over the course of the near-century that it’s been around, and by the growing body of research supporting the peer movement within the recovery community at large.
In New York state, the peer recovery movement is centered around Recovery and Community Outreach Centers (RCOCs). The charge to establish RCOCs statewide has been led by Friends of Recovery for New York, a grass-roots organization founded in 2008 by professionals in addiction treatment and members of the recovery community, which describes RCOCs as centers for “information, non-clinical support, and education to individuals in Recovery, their families, friends and other allies.”
RCOCs are staffed mostly by trained peer-recovery coaches who, in many instances, came to the center for help after getting out of rehab. Their personal experience in navigating recovery is what makes them the best advocates. In 2016, there were only 3 across the state. Last year, in 2019, there were at least 25 in New York.
Initially in working with this community I tried to just listen. I did this through open-ended interviews with professional treatment providers, showing up to events sponsored by RCOCs and other recovery organizations and connecting with people via Facebook and other social media platforms. Throughout this process I visited an RCOC in the Bronx called the Odyssey House, where the facilitator and participants generously allowed me to sit in on the weekly support groups.
It became clear that without the proper support in recovery, people can sometimes spend decades of their lives in and out of hospitals, often homeless or incarcerated in between. “I went from being a judge in Georgia to homeless in upstate New York in a matter of about five years,” said Johnathan A., who I met at a Recovery Community and Outreach Center (RCOC) last spring. “It wasn’t until I came in to the Turning Point and was able to get help with housing that I finally got sober.”
Johnathan A.’s story speaks to the two main needs I came across, which are: a holistic approach to long-term recovery care, including help with housing, employment, childcare, sober social interactions, and other aspects of life which may not typically be associated with treating addiction. And the second, which is: hands-on help navigating what can be a very confusing and overwhelming process, particularly in early recovery.
My research and reporting also confirmed that a longterm approach to recovery is essential. When I dug into the data for New York State, I found that half of all Medicaid patients do not receive follow-up or “engaged care” after they are discharged from rehabs or detoxes. The regions of New York with the lowest levels of continuing care had the highest levels of readmission to acute treatment, including emergency rooms. What I heard from the community is that recovery really begins when you leave rehab. Figuring out where to get information on all the resources available to someone seeking recovery, however, can be incredibly difficult for professional providers and people seeking support alike.
This issue is not unique to the community of people in recovery. The challenge of finding the information you need about healthcare or anything else that is shrouded in bureaucracy is ubiquitous.
This is why services such as ZocDoc have been so successful, it’s just an easy-to-navigate platform that gives you the right information based on your needs and location. For a time I pursued the idea of building a similar platform targeted to this community state-wide, which led to one of the biggest trial-and-error lessons of this practicum project.
While the idea of a customizable, tailor-made platform that could host these myriad resources was a noble pursuit, the logistics of it were unfeasible. When I pared down the project to the essential requirements: an organized, searchable, digital compendium of the resources that allows for multiple people to contribute crowdsourced content…it turns out Google Docs works just fine for that.
In the end I worked with peer support specialists from the Odyssey House in the Bronx to digitize their binder of recovery resources into a searchable document online.
This in no way rivals ZocDoc, but it does make these resources more readily accessible to professional treatment providers, peer-support specialists and community members. This conveyed another important lesson that I took away from the process: start small and scale up. By starting with a project scope that was too broad and complicated, I lost time that could have gone instead to further iterations of the very doable resource guide for the community at the Odyssey House.
At a smaller scale, you can more easily assess the impact of the project while also resolving any miscalculations before moving on to a bigger iteration of the idea. With the resource guide for the Odyssey House, for example, the online version of the resource guide worked well for professional treatment providers and some peer-support specialists. However, once it was finished, it became clear that access to the internet and unfamiliarity with Google docs would ultimately limit its reach. Had the project continued, it would have been worth the investment to create a hardcopy companion to it. This valuable insight came after the guide had already been put together from trial, error and feedback at a manageable scale.
A final thought on working with the community of people in recovery: in the midst of the worst opioid crisis this country has ever faced, we need the experience of the recovery community more than ever. I learned through this process that recovery from addiction comes down to the same fundamental question that every human being struggles with, which is: how do I build a good life? How do I find a sense of purpose, how do I cope with my emotions and build a community of people who support me? If we listen, I think we could all learn something about those things from the community of people in recovery.
Big takeaways for social and engagement journalism
- Show up and listen with no agenda. This leads to surprising insights that are useful for the full breadth of reporting, from data to enterprise to longterm engagement work.
- When the needs of the community are reflected in the work you are doing and you seek ongoing feedback, you build trust that generates momentum for ongoing engagement plus a reliable network of sources for traditional reporting.
- Meet people where they are. This applies to all stages of the process, from listening to publishing. In my case, this usually meant showing up in person. For the final product, a combination of digital and hardcopy would have been most useful for this community.
- Start small and iterate with feedback. There’s no way to perfectly engineer solutions to a community’s information needs. It takes experimentation, failures and collaboration to move towards impact.