NYAPRS Note: Several weeks ago, recovery advocates launched a furious counter campaign against a recent Times Op Ed’s view that we should return to build more ‘modern asylums. This week, Mental Health Weekly ran the piece below that included comments from a number of groups, including our NYAPRS Board Presidents Alison Carroll and Carla Rabinowitz (included input from board member Brian Hollander).
Advocacy Outcry Over New York Times Op-Ed Touting Return To Institutions
Mental Health Weekly March 2, 2015
Members of the mental health and disability communities are up in arms over comments in a New York Times op-ed and in JAMA that suggest a solution for patients with mental illness and developmental disabilities who cycle between emergency hospitalizations and inadequate outpatient care is to be cared for in “modern asylums.” Many have followed up with letters to the New York Times.
In the February 18 New York Times op-ed, “Modern Asylum,” Christine Montross, M.D., Rhode Island Butler Hospital staff psychiatrist, writes in response to a JAMA article by Dominic A. Sisti, Ph.D.; Andrea G. Segal, M.S.; and Ezekiel Emanuel, M.D., Ph.D., ethicists from the Department of Medical Ethics and Health Policy in the Perelman School of Medicine of the University of Pennsylvania.
In JAMA, the aforementioned authors write that well-designed community-based programs are often inadequate for a segment of patients who have been deinstitutionalized. “For severely and chronically mentally ill persons, the optimal option is long-term care in a psychiatric hospital, which is costly,” Sisti, Segal and Emanuel wrote.
“For persons with severe and treatment-resistant psychotic disorders, who are too unstable or unsafe for community-based treatment, the choice is between the prison-homelessness acute hospitalization-prison cycle or long-term psychiatric institutionalization,” they wrote. “The financially sensible and morally appropriate way forward includes a return to psychiatric asylums that are safe, modern and humane.”
Montross in her NYT op-ed said that “the movement to deinstitutionalize the mentally ill has been a failure.” Patients with chronic, severe mental illnesses are still in facilities — only now they are in medical hospitals, nursing homes and, increasingly, jails and prisons, places that are less appropriate and more expensive than long-term psychiatric institutions, Montross wrote.
Montross said a new model of long-term psychiatric institutionalization, as the JAMA contributors suggested, would help patients with mental illnesses. She noted that group homes for the mentally disabled are established to provide long-term housing while preserving community engagement. Rigorous regulations evolved to ensure patient safety and autonomy have “backfired,” Montross wrote.
“Modern asylums for the severely mentally disabled would provide stability and structure,” she wrote, adding that sensory issues often accompany severe intellectual disability, so rooms with weighted blankets, relaxing sounds and objects to squeeze would help patients calm themselves.
Advocates respond
The Bazelon Center for Mental Health Law, in response, issued policy alerts February 20 urging the field to write 150–170 words to the NYT editor to oppose those ideas espoused in the op-ed. “It’s important for the editorial board to hear from a ton of people in order to understand how far out of the mainstream and widely rejected the idea of expanding long-term institutionalization is,” the Bazelon alert stated.
Among the points to be made is that public policies should emphasize proven treatment that promotes recovery and services and support that empower people to make their own life choices and to participate fully in their communities, according to the alert.
“We think it’s a bad idea for people with mental health and developmental disabilities to go to long-term institutions,” John Head, spokesperson for the Bazelon Center, told MHW. “It’s a policy that failed in the past.”
Despite the authors’ discussion of a “modern asylum,” the problem is the very nature of these large institutions that keep people there in the long term, Head said. “The institutions don’t provide individual care,” he said, adding that the problems there include overmedication, seclusion and abuse, he said.
The JAMA contributors would have one believe that institutions can provide patients with mental illness peace and rest, he said. Those are “idealized versions” of what large scale institutions are like, said Head.
He pointed to the JAMA article, which referenced the Massachusetts-based Worcester Recovery Center and Hospital — a “transformed” state hospital with 320 rooms that provides treatment services, psychiatric research and medical education programs. The hospital costs $300 million to build and $60 million a year to operate, said Head.
How many states, noted Head, could afford that amount to build and $60 million annually to operate it? The discussions do not indicate the need for investments in community-based services, said Head. Community-based mental health services continue to be underfunded, said Head. “We’re not stepping back,” he said. Head noted the recently established Recovery Now! Campaign, formed to advance recovery-focused care and supported by such organizations as the National Coalition for Mental Health Recovery, the Bazelon Center and Mental Health America (see MHW, Feb. 23). “We had a discussion among coalition members about what a bad idea this is,” he said. If there are enough comments on this perspective, the New York Times will feel it should publish the letters from this perspective, Head said. Calls to the NYT editorial department went unreturned.
The Bazelon Center wants the letters to point out that the field has years of experience with community services that work, and the problem is that they are under-funded and in short supply, not that people with disabilities belong in institutions.
NYAPRS
Bazelon officials believe it would be more effective for organizations and individuals to submit their own letters to the NYT rather than sign on to one letter as a coalition, said Head. “The number of letters from a broad spectrum of organizations will provide The New York Times with a better sense of how strongly people feel about it,” said Head.
Alison Carroll and Carla Rabinowitz, providers and co-presidents of the New York Association of Psychiatric Rehabilitation Services (NYAPRS), told MHW they are very concerned over the “disturbing” articles calling for the establishment of “modern asylums” and increased use of court-ordered treatment.
“We are also very troubled that these regressive trends are also extending to Congress, where proposals to build more institutional beds are joined with those to erode personal rights, including a push to expand coercive community treatment and near-elimination of Protection and Advocacy Organizations — the administrative and legal recourse for allegations of abuse, neglect and violation of the civil rights for individuals with disabilities,” they said. “We must not support taking away both a person’s community and their voice.”
Carroll and Rabinowitz added, “The answers don’t lie in rebuilding institutions or forcing the same care that has failed people in the first place: they are to be found by directing the resources necessary to better deploy and train our staff and to create a more adequate and innovative continuum of community options.”
Disability rights
“As a disability legal organization, so often our main response is to protect individuals from abuse and neglect, including individuals with live-in facilities,” Elizabeth Priaulx, senior disability legal specialist at the National Disability Rights Network (NDRN), told MHW. Montross’ assertion that institutions can provide security and stability is wrong, she said. “The ‘modern asylums’ are no panacea to abuse and neglect,” said Priaulx. “It comes down to neglect.”
David Card, NDRN spokesperson told MHW that the organization submitted a response to the Times but has not received word if they plan to run it. “We are also encouraging all of our member protection and advocacy agencies to respond. We are coordinating with like-minded organizations like the Bazelon Center,” he said.
The NYT op-ed can be viewed here: http://www.nytimes.com/2015/02/18/opinion/the-modern-asylum.html?_r=1