Advocate for the mental health recovery movement Pat Deegan wrote, “The professionals called it apathy and lack of motivation. They blamed it on our illness. But they don’t understand that giving up is a highly motivated and goal-directed behavior. For us, giving up was a way of surviving. Giving up, refusing to hope, not trying, not caring—all of these were ways of trying to protect the last fragile traces of our spirit and our selfhood from undergoing another crushing.”
Staff who work in programs treating people with mental illness are often frustrated by their clients’ apparent and troubling lack of desire to get better or set any goals. In fact, such amotivation is considered pathognomonic of schizophrenia. However, as Deegan, who has personally experienced mental illness, eloquently points out, such lack of motivation may serve a purpose in the life of the person with mental illness. How can we promote the growth of those fragile traces of spirit and selfhood? How do we create an environment where people can feel strong enough to risk the crushing that living can deliver?
Before making an attempt at answering these questions, I need to take a step back and describe the setting in which I lead a team of staff working with people with serious mental illness in a PROS program in the Bronx, New York.
In New York State, mental health services are being reinvigorated by an approach that recognizes that people can and do recover from mental illness. An extensive body of research over the past 50 years has shown that many people who have had mental illness, even the most severely ill, get much better over time—and even fully recover. The still relatively new PROS (Personalized Recovery Oriented Services) program puts that philosophy of recovery into operation and has almost completely replaced the day programs that previously served adults with a serious mental illness.
At Bronx REAL, a site of JBFCS (Jewish Board of Family and Children’s Services), we had a CDT (Continuing Day Treatment) program for many years which provided daily structure, stabilization, and support to people with mental illness in a milieu setting, which included groups and individual psychotherapy and case management. We also had an IPRT (Intensive Psychiatric Rehabilitation Treatment) program, providing rehabilitation services to clients who, having achieved psychiatric stability, and had a goal they wished to pursue. In June 2010, these two programs were combined into a new PROS program, with all the chaos and excitement of creating a whole new service.
What makes PROS different than the old CDT/IPRT? In some basic ways the community of staff and participants is similar. We didn’t have to be told—although it is always a good reminder—that treatment should be person-centered. We had a tradition of working to understand the personal elements of someone’s illness, the meaning of delusions or hallucinations, say, to the person him or herself. We paid attention to our clients’ life experiences, including trauma or neglect, in many cases severe enough that it would have been hard for anyone to keep his or her sanity.
We also recognized and celebrated people’s progress toward health, which often comes in very small steps. Someone who has been withdrawn and isolated raises his hand in community meeting and offers an opinion, even if its off-topic! Someone who has a great deal of trouble getting along with others, tends to be hypersensitive, and is always getting into arguments, and one day, in one of the meetings we always have when conflicts arise, she is able to acknowledge the other person’s point of view. We recognized these small but crucial steps forward.
We have always individualized treatment; that is, we looked for challenges for people that fit their current strengths and difficulties, from, say, cutting a carrot for lunch to being the team leader of a kitchen team that makes lunch for 150.
While we had a rare few people over the years who left the program to get a master’s degree, find a job, get married, and have children, we thought that for most of our clients the best-case scenario was a niche in our insular community—having good friends here, a daily structure, and some responsibility. Even when clients had been “thrown away” by society or by their families, they were valued in our program. We had a warm community, and many clients stayed in it for years.
What PROS offers is the opening of a window to the life beyond our community, beyond serious mental illness and lifelong treatment settings. And that makes a huge difference. For many people, the light and air coming through that window has been transformative. There is a new feeling that someone can get back to or create a normal life in spite of lifelong illness.
Many of our participants, however, are not on board with recovery. When asked about their goals for the future, they may only parrot the old, politically-correct-at-the-time message, “My goal is to stay out of the hospital, take my medication, and come to program every day.” All efforts to encourage something more are rebuffed and may even feel—to both parties—like staff is harassing the person.
There is no easy answer to the conundrum of motivation, especially for people who have been in the old mental health system for many years. The recovery model offers some guidelines, and we have developed some on our own.
One subset of apparently unmotivated PROS participants are those who are severely withdrawn, almost uncommunicative, ensconced in their own world. They are not able to clearly state a life goal in PROS and may not be able to communicate much at all. We have a four times weekly group called Developing Focus, which creates a safe space within the larger program for these participants to begin to look outside themselves, to learn basic communication skills, to start seeing themselves as able to direct their own lives. Perhaps that may begin by choosing the activity of the group for the day, or the destination of a walk in the community.
Another initiative in the PROS program that has helped to throw open the window is the vocational program, which requires us to help people find jobs, using the Individualized Placement and Support (IPS) approach, an evidence-based practice, something the previous CDT and IPRT weren’t authorized to do. The effect on the community of seeing peers getting jobs has been inspiring, and we expect this influence to grow as more participants go out to work.
Finally, we have hired a worker who has peer specialist training and life experience of mental illness, and we expect that this will also contribute to an atmosphere of hope and potential. This worker can not only be a role model, but can provide specific information about recovery from the perspective of one who’s been there.
Neither staff nor participants are sure that we fully trust the larger world outside our small community. Will there be jobs for “our” people—the Bronx has the highest unemployment rate in the state (11.8%, according to the November 2012 report from the state Department of Labor)? Will the world out there tolerate our people’s sometimes severe idiosyncrasies and understand that they are not evidence of dangerousness? Will our people be stigmatized and treated poorly out there?
The recovery model tells us that these challenges are the price of freedom, and that people with mental illness, like all of us, can take the risks and survive and thrive, perhaps with some help from programs like PROS.
For more information on JBFCS’ Bronx REAL PROS program, contact Intake Coordinator Laura Salamone: 718-931-4045, x247.
Davidson, L. (2012, February 6). The Issue of Insight. Special Feature: Recovery to Practice newsletter. Retrieved January 10, 2013 from http://www.dsgonline.com/rtp/special.feature/2012/2012.02.12/SF.2012.02.12.html
Deegan, P. (1994). A Letter to My Friend Who is Giving Up. The Journal of the California Alliance for the Mentally Ill, 5, 18-20.
New York State Department of Labor, (2012, December 27). State Labor Department Releases November 2012 Area Unemployment Rates. Retrieved January 10, 2013 from http://labor.ny.gov/stats/pressreleases/prlaus.shtm
SAMHSA (Substance Abuse and Mental Health Administration). (2011, July). Thirty of the Most Frequently Asked Questions About Recovery and Recovery-Oriented Practice (and some beginning answers). Retrieved January 10, 2013 from http://www.dsgonline.com/rtp/FAQs/SAMHSA%20RTP%20FAQs_Edited.pdf
See also http://www.dsgonline.com/rtp/resources.html for past newsletters and other recovery resources from the Recovery to Practice initiative of SAMHSA.