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Community Partners:

 

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For more information on the CASD, please contact:

 

Kristin Sokol

CASD Project Coordinator

ksokol@iit.edu

Phone (312)567-5246

Fax (312)567-6753

 

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People in Recovery

 

About this Page

 

Consistent with Core Value #5 of the Center on Adherence and Self-Determination (CASD), people in recovery are esteemed by the CASD as essential agents in the research process.  In line with the principles of Community-Based Participatory Research, this page is meant to showcase the voices of people in recovery, including Consumer/Survivor Researchers and others who have lived experience with mental illness.  On this page one can find interviews with people in recovery meant to shed light on their views on issues relevant to the CASD. Also available here are national and international resources for people in recovery, recommended readings, and information about national and international events related to the mission of the CASD.  

 



 

Consumer/Survivor Interviews

 

These interviews are conducted by Janice Parker, Assistant Director of Consumer Affairs for the Center on Adherence and Self-Determination.  The goal of these interviews is to highlight views on issues relevant to the CASD held by individuals with lived experience with mental illness.  Click on the individual's name to view their interview.  Please check back frequently for new interviews.

 

Name Title/Role
Janice Parker

Assistant Director of Consumer Affairs

Center on Adherence and Self-Determination (CASD)

Person in Recovery

Patricia E. Deegan, PhD

Pat Deegan, PhD & Associates, LLC (PDA)

Survivor Researcher

Susan Rogers

Director of the National Mental Health Consumers' Self-Help Clearinghouse

Ruth Ralph, PhD

Retired Senior Research Associate

Keith Mahar

Mental Health Advocate, Political Activist, Social Worker, and Survivor

Ingrid Ozols

Workplace Educator and Mental Health Advocate

Joseph Rogers

Chief Advocacy Officer, Mental Health Association of Southeastern Pennsylvania

Robert Lundin

Case Manager at DuPage County Health Department, and Writer and Playwright

Khatera Aslami

Consumer Empowerment Manager, Alameda County Behavioral Health Care Services

Patrick Hendry

Senior Director of Consumer Advocacy, Mental Health America

Pat Risser

 

 

Coming Out Proud program
Self-stigma is one of the egregious impacts of mental illness stigma, a diminished sense of self-esteem and self-efficacy leading to a “why try” effect in many people:  “why try get a regular job, someone like me doesn’t deserve it.”  Recently, innovative programs have emerged to challenge self-stigma, programs based in part on psychoeducation and cognitive reframing skills meant to challenge stigmatizing self-statements.  An interesting result has emerged out of research by our group that informs an alternative program for dealing with self-stigma: the Coming Out Proud program (COPp).  Research shows those who have disclosed aspects of their mental illness frequently report a sense of personal empowerment that enhances self-esteem and promotes confidence to seek and achieve individual goals.  In this light, a group of people with lived experience and stigma researchers developed the Coming Out Proud program, now being used in beta research in the United States, Europe, Australia, and China.  The Coming Out Proud program is a step-by-step program meant to guide people who are uncertain about whether or not to disclose their mental illness history.  The Coming Out Proud program is divided into three lessons:
 
 
 
1. Considering the pros and cons of disclosing;
 
2. There are different ways to disclose; and
 
3. Telling your story.
 
 
 
A workbook has been written as a companion to this manual (Coming Out Proud: To Eliminate the Stigma of Mental Illness – Workbook).  The workbook briefly summarizes the key points of each lesson, and also provides useful exercises that help participants to make decisions as well as implement actions surrounding/related to coming out.
 
Click here to download the COPp Manual.
 
Click here to download the COPp Workbook.

 




 

Tools

Coming Out Proud program

Self-stigma is one of the egregious impacts of mental illness stigma, a diminished senseof self-esteem and self-efficacy leading to a “why try” effect in many people: “why try get aregular job, someone like me doesn’t deserve it.” Recently, innovative programs have emergedto challenge self-stigma, programs based in part on psychoeducation and cognitive reframingskills meant to challenge stigmatizing self-statements. An interesting result has emerged out ofresearch by our group that informs an alternative program for dealing with self-stigma: theComing Out Proud program (COPp). Research shows those who have disclosed aspects of theirmental illness frequently report a sense of personal empowerment that enhances self-esteem andpromotes confidence to seek and achieve individual goals. In this light, a group of people withlived experience and stigma researchers developed the Coming Out Proud program, now beingused in beta research in the United States, Europe, Australia, and China. COPp is a three-sessiongroup program run usually by pairs of trained leaders with lived experiences. COPp has acomprehensive, user-friendly manual; step-by-step workbook and corresponding worksheets;fidelity measure; and leader training program which can be obtained from NCSE1.ORG. Thethree lessons include:

1. Considering the Pros and Cons of Disclosing:

  1. My identity and mental illness.
  2. Secrets are part of life.
  3. Weighing the costs and benefits of disclosing.

2. Different ways to Disclose:

  1. Five ways to come out.
  2. Testing a person for disclosure.
  3. How might others respond to my disclosure?

3. Telling your Story:

  1. How to tell a personally meaningful story.
  2. Who are peers that might help me with coming out?
  3. Review how telling my story felt.
  4. Putting it all together to move forward.

The program is designed to aid in the facilitation of disclosure of certain aspects of livedexperience with the objective of reducing the self-stigma associated with mental illness.

Click here to download the COPp Manual.

Click here to download the COPp Workbook.

Click here to download the COPp Workbook Fidelity Measure.

 

Testing the Efficacy of the Coming Out Proud Program: a Randomized Controlled Trial
Approximately 100 individuals with the lived experience of mental illness will berecruited to participate in the trial. After a brief phone screening, potential participants will befully informed of the study and if interested, informed consent will be obtained. Participants willthen be randomized to either the COPp (intervention group) or be wait-listed for the program(control group). For those in the COPp group, the program will be provided at a time and placeconvenient to participants, usually three days or nights within a single week. The programwill be facilitated by two trained leaders with lived experience, in groups of approximately6-10 participants. During this time, facilitators will thoroughly cover each lesson of theCOPp program workbook (one lesson per each session). Participants in both the control andintervention groups will be administered measures at baseline (one week window before startingCOPp or the control), post-test (one week window after COPp or the control) and follow-up (one month after COPp or control). Measures will include standardized instruments that assess self-stigma, disclosure, personal empowerment, self-esteem, self-efficacy, and recovery . The protocolaims to determine if the COPp reduces secrecy- and disclosure-related distress, self-stigma,shame, secrecy, social withdrawal, stigma-related stress and stigma as a barrier to seek help ascompared to the control group. Additionally, it aims to determine if the intervention increasesempowerment, self-esteem, disclosure-related self-efficacy and quality of life as compared to thecontrol group.

 

For more information, please contact Dr. Jon Larson at This e-mail address is being protected from spambots. You need JavaScript enabled to view it  

 


 

Social Networking Sites

 

This document, created by the Illinois Mental Health Collaborative, contains various social networking sites that have forums, chatrooms, blogs, resources, and online support groups. Note— This list is for informational purposes. Neither the IL Mental Health Collaborative nor the IL Division of Mental Health endorses or favors any of the sites listed. As with any Internet site, use personal discretion when self-disclosing personal information.

 

Click here to access the list of Social Networking Sites. 

 

 


 

 

The Perch

 

The Yale Program for Recovery and Community Health has launched an online literary magazine featuring pieces by authors from near and far, including Yale faculty and staff, New Haven area residents, and interested writers from around the U.S. and abroad. The goal is to publish an inaugural, pilot issue of the magazine in early 2013 with the hope of continuing publication biannually. Published pieces will ideally complement their program’s core focus on issues of health in the community and personal journeys through life. Their magazine takes a broad and holistic view of mental health as encompassing its physical, emotional, and spiritual aspects. In addition, they are interested in individual health as well as larger societal health and how these two domains interact.

 

Please click here for access to The Perch.

 



 

Resources

- NAMI 

NAMI

http://www.nami.org/ 

 

- National Mental Health Consumers' Self-Help Clearinghouse

clearinghouse

http://mhselfhelp.org/

 

 

Recommended Readings

- Don't Call Me Nuts! Coping with the Stigma of Mental Illness

DCMN

 

Click here to order a copy from Amazon.com. 

 

- Mental Illness Fallacies Counterproductive

By Larry Davidson

This op-ed piece by Larry Davidson, professor of psychiatry at the Yale University School of Medicine, is an excellent discussion of stigma related to the treatment of mental illness.

 

Events

 

 

If you have any suggestions for how we might improve this page, please email Janice Parker at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .