Making the Case for Community-Based Programs

BOOK REVIEW

Voices of Hope for Mental Illness: Not Against, With

by Jackie Goldstein; Charlston, SC: CreateSpace Independent Publishing Platform, 2015
233 pages • $14.99 (softcover)[[{"type":"media","view_mode":"media_crop","fid":"51553","attributes":{"alt":"","class":"media-image media-image-right","id":"media_crop_8596003269665","media_crop_h":"0","media_crop_image_style":"-1","media_crop_instance":"6518","media_crop_rotate":"0","media_crop_scale_h":"227","media_crop_scale_w":"150","media_crop_w":"0","media_crop_x":"0","media_crop_y":"0","style":"font-size: 13.008px; height: 189px; width: 125px; float: right;","title":" ","typeof":"foaf:Image"}}]]

Voices of Hope champions community recovery programs for persons with severe mental illness. The author, a former psychology professor at Samford University in Birmingham, Alabama, tells the stories of exemplary community treatment programs. She begins by describing one such program in Geel, Belgium, founded during the Middle Ages and active today.

She then introduces the reader to 15 community programs across the US, including the Village, run by Mark Ragins; Broadway Community Housing, founded by Ellen Baxter; and Gould Farm, established in 1913 and located in Monterey, Massachusetts. These programs focus on healing through human relationships, meaningful work, and a sense of community. Most are affordable to all, because Goldstein recognizes the connection between mental illness, poverty, and homelessness.

When I visited Gould Farm and wrote about it in Psychiatric Times,¹ I was, like Goldstein, struck by the integration of its “guests” with the staff and their families who worked there. Living and working alongside people with mental illness represents the kind of community integration that Goldstein searches for and believes essential to providing a healthy environment that reduces stigma and promotes recovery.

Mental illness is part of our human existence, she suggests, and we must help communities “live with the fact, not fear, of mental illness in their midst.” While hospitals, psychopharmacology, and therapy are important and often necessary, Goldstein finds evidence that these are not enough to support a person with mental illness to live a meaningful life.

We must help communities “live with the fact, not fear, of mental illness in their midst.

While a psychiatry resident, I valued Courtenay Harding, Joseph Zubin, and John Strauss’s important paper on schizophrenia outcomes.² The authors reviewed the longitudinal course of persons with schizophrenia and looked at clinical biases that led to falsely low prognoses of outcome. They examined iatrogenic factors and concluded, “The substantial list of psychosocial artifacts that create chronicity, over and above illness factors, has contributed a large segment of patients for whom chronicity could have been avoided.”²

The book supports the activist mission of Harding and colleagues.² As a humanist, Goldstein wrote her book because parents and their adult children with schizophrenia struggled to find the resources and support they need. Hers is a book of grassroots endeavors and the individuals who passionately, and often at great sacrifice, work to build community-based programs for people with psychiatric illnesses.

One compelling chapter in the book centers on the work of Ellen Baxter, founder of Broadway Housing Communities in New York City. As an undergraduate at Bowdoin College, Baxter feigned symptoms of mental illness to get herself admitted to the Augusta State Hospital to investigate conditions there. Baxter later spent a year in Geel, Belgium, on a Watson fellowship and returned to the US determined to develop community programs inspired by the family care model she discovered in Geel. This model of psychiatric care in a family home contrasted starkly with the inhumane treatment she experienced first-hand in the Maine state mental institution.

Goldstein also describes the work of psychiatrist Mark Ragins, who in 1990 headed up the Village in Long Beach, California, a support service for community integration and member recovery. Ragins was inspired by Boston University psychiatrist William Anthony who spearheaded the recovery movement for mental illness. Ragins found that treating the whole person and providing integrated services for people with severe mental illness-many of whom also struggle with substance abuse and homelessness-could turn their lives around.

Goldstein concludes her book with the story of her own effort to start a community program. She helped found a local Compeer agency. Compeer was established in Rochester, New York, first as a program called “Adopt-a-Patient” that matched community members with persons with mental illness leaving state institutions from 1970 to 1986. Its name was changed to “Compeer” to emphasize the peer aspect of the relationship of a person with mental illness and community-matched “friend.”

Compeer agencies sprouted up throughout the country. When Goldstein invited a small group of interested people to meet in her home and brainstorm the opening of a local chapter of Compeer, she did not anticipate how much work and how many obstacles the group would encounter. She recounts the efforts of applying for non-profit status, establishing a board, and getting funding and donations. Her agency lasted for 10 years before funding, staffing, and recruitment challenges led to its closing.

Mark Ragins, in his essay “Hope and Schizophrenia,” describes a patient with schizophrenia who asks him, “What do you want from me? Just tell me what you want and I’ll do it.”³ Ragins thinks for a moment and replies, “I want you to hope: I want you to hope there can be more to life than staying out of the hospital. I want you to hope that you can use medication to relieve some of your suffering. I want you to hope that your self hasn’t been swallowed up by your illness and you can recover the things that make you special.”

The expectation of parity has not been met in this country. Hope for parity was born with the passage, in 2008, of the Mental Health Parity and Addiction Equity Act. This hope grew when the Patient Protection and Affordable Care Act was passed in 2010. Despite these 2 pieces of legislation, federal funding for mental health care has experienced big cuts. The 2015 Institute of Medicine Psychosocial Report documented the large gap that exists between what is known to be effective psychosocial treatments for mental illness and what is currently practiced.⁴ Their report calls for establishing standards for psychosocial interventions.

The NIMH Recovery After an Initial Schizophrenia Episode (RAISE) project, launched in 2008, has now reported that recovery-oriented treatment programs that include psychosocial supports improve outcome in persons with a first episode psychotic illness.⁵ As Goldstein so well demonstrates, we need legislation, federal funding, and individuals who take action. We also need research that provides evidence of the importance of building comprehensive and integrated systems of mental health care.

Voices of Hope is an important resource for families and their loved ones suffering from severe mental illness; for people looking for inspiration and guidance to establish community programs; and for mental health professionals who can benefit from reminders to address the basic human needs of their patients.

This article was originally posted on 9/7/2016 and has since been updated.

Disclosures:

Dr Schen is Assistant Clinical Professor in the department of psychiatry at Harvard Medical School, Cambridge, Mass. She reports that she has no conflicts of interest concerning the subject matter of this article.

References:

1. Schen CR. Farming and doctoring. Psychiatric Times. 2013:30(12)37-38. http://www.psychiatrictimes.com/depression/farming-and-doctoring. Accessed August 31, 2016.

2. Harding CM, Zubin J, Strauss JS. Chronicity in schizophrenia: fact, partial fact, or artifact? Hosp Community Psychiatry. 1987;38:477-486.

3. Ragins M. Hope and schizophrenia. In: Exploring Recovery: The Collected Village Writings of Mark Ragins. Mental Health America of Los Angeles. http://static1.1.sqspcdn.com/static/f/1084149/15458164/1323114583167/03HopeandSchizophrenia.pdf. Accessed August 31, 2016.

4. Institute of Medicine. Psychosocial Interventions for Mental and Substance Use Disorders. July 2015. www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/Psychosocial-Report-in-Brief.pdf. Accessed August 31, 2016.

5. National Institute of Mental Health. Recovery After an Initial Schizophrenia Episode (RAISE). http://www.nimh.nih.gov/health/topics/schizophrenia/raise/index.shtml. Accessed August 31, 2016.