A recent JAMA opinion piece calling for a return to asylums – not the bad kind, the authors (three Penn bioethicists) insist, but a “safe, modern and humane” kind of asylum – led to a radio debate between co-author Dominic Sisti, associate professor of medical ethics at the University of Pennsylvania, and Joseph Rogers, chief advocacy officer of the Mental Health Association of Southeastern Pennsylvania (MHASP) and executive director of the National Mental Health Consumers’ Self-Help Clearinghouse. The debate, on WHYY’s Voices in the Family, was moderated by the show’s host, Dr. Dan Gottlieb. To listen to the archived program, click here.
Dr. Sisti began by insisting that “we do not want to return to those asylums … that are now infamous for incarcerating thousands of Americans … What we were calling for is a rehabilitation of the term ‘asylum’ … [as] a safe sanctuary where they may be able to heal and reclaim their lives in recovery.” Asked about the reason for the widespread use of chemical restraints, Dr. Sisti responded that it is “a lot easier to maintain control and safety in an overcrowded institution when individuals are chemically controlled. We’re seeing this now in prisons,” where individuals with mental health conditions who are often without access to adequate treatment are “oftentimes given large doses of drugs to keep them both safe and comfortable” (emphasis added).
Throughout the hour-long program, Joseph Rogers was the voice of reason, debunking Dr. Sisti’s arguments. After establishing his credentials – “I’ve been in hospitals; I’ve been in jails; I’ve been homeless; I have a diagnosis of bipolar disorder which at times has left me incapacitated” – Rogers talked about his experience in a state hospital: “When I hear the term ‘asylum’ I get my back up because there was no asylum. These places … are not safe places … You were warehoused.”
“We can create alternatives” such as peer-run crisis respites, he continued. This model, he said, “has had wonderful success, even with people with some very difficult challenges.”
Rogers also noted that, although Dr. Sisti is based in Philadelphia, he didn’t talk about the Philadelphia experience, when “we closed down Philadelphia State Hospital and years later they found that those individuals” who had been released from the hospital when it closed were living successfully in the community.
“We know how to do it,” Rogers said. The key is providing for people’s individualized needs. The question, he continued, is whether we have the power politically. It’s a matter of funding community-based, evidence-based programs that we know work for even individuals with the most serious mental health conditions. “And we need to fund them fully and not let them become budget basketball.”
Among those who called in to the program, the most compelling was “Christy,” who said she had recently been released from Norristown State Hospital after six days. “I ended up there for some severe depression. I was forced to take medication against my will; I was disrespected; any time I tried to advocate for myself, I was told to cooperate or threatened with a longer stay,” she recalled. “I thought it was completely unethical. I think it goes to show how few rights you have when you are deemed mentally ill. I don’t think it was set up to help people succeed. Many people were just drugged. I didn’t get any therapy. I repeatedly told them about myself and how meds affect me – and I was forced to take medication. I went in voluntarily and was forced to stay longer. I’m a college-educated person and I tried to advocate for myself and I was not listened to. I’m seeing an outpatient therapist but the experience at Norristown scarred me for life. It was very extreme.”
In response to the moderator’s question about what works and what doesn’t, Rogers responded: “We have to treat people as individuals.” Perhaps referring to the fact that the moderator consistently avoided the use of “people first” language, Rogers said, “We don’t like to label people as ‘the mentally ill’; we talk about people with mental health challenges.”
“What we have found here in Philadelphia,” he continued, “is that we have to really meet the person where they are at.” Referencing some of the individualized outreach efforts in the city, including a street outreach program called ACCESS (operated by MHASP), he said that “we learned early on” that you can’t set up a big community mental health center and put the counselor on the fourth or fifth floor and expect people with serious problems to make an appointment and come to the fourth or fifth floor. “You need to be on the street, to work with people where they are at, to find out exactly what they are concerned about that you can address, and by addressing those issues you gain their trust.” That is how you are able to help a person seek and gain the support they need, he said.
“One thing that doesn’t work is overmedicating people,” Rogers noted. “Many people do much better on small amounts of medication or no medication at all.” Some people’s behavior may be the result of heavy medication, he added.
To the moderator’s question about people who don’t have loved ones who can help them, Rogers responded, “A lot of times family members burn out or aren’t around … We’ve got to create an artificial family. One of the things peer-run crisis respites do is use peers who have been trained to work one on one with individuals in crisis and provide a homelike environment and prevent hospitalization or going into a jail. You thus prevent further trauma.”
Rogers also talked about Housing First, a program in Philadelphia and elsewhere: “You provide decent, affordable housing for that person and you build the supports around the person based on their needs….You can help the person get involved in the community.”
In response to Dr. Sisti’s continued insistence that institutions can be effective, Rogers countered that with large, congregate living situations, even with 15, 20, or 30 people, “the rights situation is problematic. At 3 in the morning, when there are no advocates around and no chance to make a phone call to an advocate, that’s when the abuses take place. This model of a ‘safe congregate living place’ is not one that is borne out, with years of research into it.”
Rogers emphasized the need for adequate resources, saying that Philadelphia probably needs 3,000 or 4,000 more supported housing units than the city currently has. “That would just address people rotating in and out of hospitals and jails, just in Philadelphia alone, not the whole region.” MHASP is advocating for additional resources with the Pennsylvania state government.
Asked by the moderator to define his dream, Rogers responded that his dream would be to create a massive movement of individuals with lived experience, families, and allies. “That’s the only way we’re going to change things.”