Arizonans first started hearing about recovery from mental illness in 1999. They were skeptical, as were nearly all Americans. Even those familiar with mental health services and their delivery had no way of knowing how much this concept would change their thinking. At the time, state regulations had recently been put into effect in an attempt to resolve the long standing Arnold v. Sarn lawsuit. Those regulations, which remain in effect today, were written at the end of an era characterized by services that were hell-bent on managing, controlling and care-taking for people with mental illnesses.
The agreement associated with that lawsuit provided additional money for certain mental health services, giving providers the ability to satisfy the terms of the agreement. But it also had an unintended benefit: highlighting the futility of the services required by Arizona’s recently minted state regulations.
It was that futility that prompted some of us in the provider community to seriously question what we were doing. All that managing, controlling, and care-taking was not resulting in people getting much better. In fact, implicit in all of those state regulations was the expectation that people receiving services would not recover and would need case management services forever.
The new revenue from the lawsuit gave us the ability to make improvements in spite of the obsolete regulations that caused us to comply with misguided requirements. We were able to expand services, establish new quality assurance standards, and develop documentation systems — all of which staff tried mightily to use. However, despite the “improvements” that we were striving to put into place, the people we were serving didn’t experience much improvement. We learned that all of that care-taking and controlling disempowered many individuals and eroded their self-determination. In retrospect, this difficult period set the stage for a breakthrough — an evolution in the way we think about and treat mental illness.
1999 was that breakthrough year. Two organizations received funds from a private foundation to train “peer support specialists.” Implicit in this still-new concept of peer support was the premise that recovery from mental illness was possible. This concept built on the foundational belief that individuals who were recovering with mental illness could, with the help of training, make a significant contribution to others in who struggled with similar recovery challenges.
Over the next several years, this concept took greater hold, as services throughout the state of Arizona began to reflect recovery principles. Operating under the outdated regulations made the exercise of these principles this much harder than it to be, but we all know that old regulations die hard. Behavioral health programs strained against the requirements to deliver services according to the regulations while trying to evolve toward value-based services built on recovery principles and practices.
One mother, one son
In the early days of this evolution toward recovery, I met a mom in the parking lot of a Phoenix-area behavioral health clinic. Both of us had traveled there at lunchtime so that, together, we could meet with the clinical team that provided services for her son. I had met this young man a few weeks earlier and, based on his positive personality, I was sure he could have a strong recovery experience. Now, with my optimistic ideas illuminated in the stark noonday sun, I hoped I was right.
I didn’t have any evidence to support my assertion, since little had been written about recovery at this point. There were a few studies that showed positive outcomes, but findings to date were far from reaching the tipping point that could create a shift in the consensual belief system of behavioral health. New studies were underway, but not far enough along to offer anything more than hopeful expectations.
At that moment, it occurred to me that I didn’t even have an official role in the treatment of this young man. I was just another provider, an eager and self-appointed enthusiast of the new hope that recovery was possible. Yet, despite my self-appointed status, I had already been successful in convincing the clinical team to meet with us. The team may not have had any idea what I was talking about, but they were willing.
As I finished crossing the hot, patchy pavement of the parking lot and greeted the mom, she wondered aloud about the wisdom of our meeting. “Sometimes,” she said, “I worry that my involvement will make things worse for him.”
“I don’t think we can make it worse,” I replied. Honestly though, I wasn’t certain. As we finished our short walk to the facility, I realized how important this meeting was going to be for both of us.
First steps in the recovery journey
Weeks before, I had assured this woman that her son could recover from mental illness. And, like most moms, she was skeptical. She had lived with the situation of illness for many years and found it hard to believe that recovery was possible for her son. I’d explained that recovery didn’t mean cured, pointing out that I too had a mental illness, continued to take medication for it, and occasionally struggled with challenging symptoms. I explained that those of us who recover learn how to connect with ourselves in ways that fortify our strong parts, and that we are able to use those strengths to overcome the life-stealing aspects of a diagnosis. She was able to hold just enough hope, fortified by her own courage, to give it a try.
“Do I need to be on my best behavior?” she asked.
“It’s probably best to just follow your heart and say what you feel would be the most helpful,” I replied.