Consumer Supporter News
January, 2000

• Exploring Wellness and Recovery
• Fact Sheet: The Seven Phases of the Recovery Process
• The 5 Steps to Launching a Voter Empowerment Campaign
• Attend an NMHA One-Day Workshop for the National Mental Health Voter Empowerment Project
• New Jersey Tries Wellness
• Grant Opportunities
• Conference
• The Clearinghouse Prepares for Self-Advocacy Training
• Becoming a Non-Profit Organization: A Case Study
• The Steps to Establishing 501(c)(3) Non-Profit Status: An Overview
• SAMHSA Studies Consumer-Operated Services
• Federal Legislative Update

Exploring Wellness and Recovery

by Jennifer Shibley, Project Coordinator, Constituency Building

NMHA is exploring the possibility of a partnership with Mary Ellen Copeland, mental health recovery educator and author. Ellen Alderton, Resource Coordinator for NMHA's Consumer Supporter TA Center and Jennifer Shibley, Project Coordinator, Constituency Building attended the Mental Health Recovery Skills Seminar: Teaching Self-Management of Psychiatric Symptoms in Putney, Vermont this past November. This seminar continued the training begun in the Mental Health Recovery Skills Seminar Part I: Learning How to Self-Manage Psychiatric Symptoms. Copeland's work is based on her intensive nationwide studies of people who have experienced psychiatric symptoms and through her own personal struggle with manic depression. By exercising recovery skills and organizing her life with a Wellness Action Recovery Plan (WRAP), Mary Ellen was able to rise from total incapacitation to enjoying a rich and rewarding life.

Accompanied by a comprehensive training manual, the workshop focused on teaching mental health recovery skills to people who experience psychiatric symptoms, to their family members and to health care professionals. Underlying principles supporting the foundation of effective recovery work include hope, personal responsibility, self-advocacy, education, and support. The WRAP program offers an individualized system for people who experience psychiatric symptoms to monitor and to respond to symptoms in order to achieve the highest possible level of wellness, stability and recovery. Some specific strategies of the WRAP program include the development of a daily maintenance program, identifying triggers and early warning signs, and preparing a crisis plan.

In sum, seminar participants learned to pass on recovery/self-management skills and strategies for effectively dealing with psychiatric symptoms. These skills aim to:

* Promote higher levels of wellness, stability, and quality of life

* Decrease the need for costly, invasive therapies

* Decrease the incidence of severe symptoms

* Decrease traumatic life events caused by severe symptoms

* Increase understanding of these illnesses in order to increase wellness and to decrease stigma for people who have experienced psychiatric symptoms.

Other topics covered included developing a wellness toolbox, a symptom monitoring and response system, peer support, motivational and problem-solving skills, and an all-around wellness lifestyle.

Copeland's presentational skills made the workshop a success: The seminar was highly informative, well organized, and inspiring. The structure of the five-day workshop allowed participants to fully engage with a variety of presentations, demonstrations, interactive discussions and related activities. The seminar also provided a wonderful opportunity for individuals from around the country who are involved in the mental health movement to get to know one another.

The Mental Health Association in New Jersey (MHANJ) is already invested in Copeland's Wellness model. MHANJ staff members have attended Copeland's training in Vermont and are creating a packet of information incorporating Copeland's WRAP and other materials. Funded in part by the National Consumer Supporter Technical Assistance Center, MHANJ is creating a statewide "Wellness is Good Mental Health" coalition, consisting of statewide mental health supporter and consumer organizations. The materials produced will be used in conference presentations, training, and community education.

If you or someone you know is interested in attending one of Mary Ellen Copeland's workshops or in ordering one of her several publications, including The Depression Workbook: A Guide to Living with Depression and Manic Depression and Wellness Recovery Action Plan, please visit her web-site at www.mentalhealthrecovery.com or www.maryellencopeland.com.

Fact Sheet: The Seven Phases of the Recovery Process

From Mary Ellen Copeland's "The Recovery Workbook"

1) Shock

The onset of mental illness, whether gradual or sudden, is often confusing. The implications are devastating and almost too much to grasp.

2) Denial

Initially, there is an attempt to ignore the reality of having experienced psychiatric symptoms.

3) Depression/Despair/Grieving

Depression can be a direct symptom of the illness, or reactive. Feelings of despair and hopelessness can continue for a long time time, but they will eventually run their course.

4) Anger

Once the grieving has run its course, anger at the illness, at the helping system with its failures, at society with its unkind attitudes, and even at friends and family will follow.

5) Acceptance/Hope/Helpfulness

By taking small steps to re-build confidence, a new and stronger self-identity gradually emerges.

6) Coping

The skills needed to live with (or without) mental illness appear only after learning acceptance.

7) Advocacy/Empowerment

Once a person has learned to cope with his or her psychiatric symptoms, empowerment follows. The individual becomes an advocate for himself and for others.

Attend an NMHA One-Day Workshop for the National Mental Health Voter Empowerment Project

"Vote! It begins with me."

YES! Please register me for Voter Empowerment Training

Limited seats available…register today!

______Date___________________Location_________________Deadline_______

____	January 18, 2000	Long Beach, California		December 13, 1999
____	February 28, 2000	Orlando, Florida			January 24, 2000
____	March 2000*			Atlanta, Georgia			February 21, 2000
____	June 2000*			Washington, DC				May 1, 2000

*Date to be announced.
Name _______________________________________
Title _______________________________________

Name _______________________________________
Title _______________________________________

Organization Name ______________________________
Address _______________________________________
City ______________ State ________ Zip ___________
Phone _____________ Fax _________________________
E-Mail __________________________

(FREE to MHAs)
Course Fee: $ 150 x # of registrants __________ = Total $ __________
Check enclosed for _________ (payable to NMHA)
Charge to: ‡ AMEX ‡ Visa ‡ MasterCard ‡ Diners Club
Card # _________________________ Exp. Date _________
(For additional registrants, please duplicate this form)
* Registrants will receive a Voter Empowerment start-up kit: Trainer's manual, introductory video, posters, buttons, and database start-up disk. Continental breakfast and lunch will be served.
* Cost does not include travel or lodging.
* Travel and hotel information will be given with registration confirmation.

If you are interested in promoting voter empowerment, either by providing further training or by registering and educating voters, please answer the questions below and fax your responses to Beth Schaar at (703) 684-5968.

1) Why are you interested in training consumer supporter groups in voter empowerment
or why are you interested in launching a voter outreach campaign?








2) Describe your plans to work in cooperation with other consumer supporter organizations (i.e. Mental Health Associations, consumer organizations, family organizations, or other advocacy groups).








3) Describe your organizational capacity. Do you have a computer to house a registrant database? How many staff can you devote to this project?











Fax this completed form to Beth Schaar at (703) 684-5968.

New Jersey Tries Wellness

by Beth Schaar, NCSTAC Resource Coordinator

Earlier this year, NCSTAC awarded the MHA of New Jersey an $8,000 mini-grant in order to promote Mary Ellen Copeland's wellness and recovery model. As part of the "Wellness is Good Mental Health Coalition," the MHA of New Jersey will work statewide with other mental health support and consumer organizations including the New Jersey Division of Mental Health Services.

"We are very enthusiastic about the MHA of New Jersey's efforts," says Catherine Huynh, project director. "It is exciting not only to see the level of commitment and dedication to undertake community outreach, but also the variety of ways outreach is being undertaken."

The wellness model is actually a process of education and support intended to empower mental health consumers/survivors to adapt patterns of behavior that can lead to improved health and heightened life satisfaction. This empowerment process includes developing an awareness of occupational, spiritual, socio-emotional, intellectual, physical, and environmental dimensions of health.

The Wellness is Good Mental Health Coalition will educate the mental health community on the positive impact that the wellness approach can have on individuals with serious or persistent mental illness and on their families. Inherent in the coalition's efforts is a commitment to reach out to communities of color and ethnic minorities to ensure cultural understanding of wellness principles and tools.

The MHA of New Jersey is one of five NCSTAC mini-grant recipients funded under the Coalitions for Community Care project.

Grant Opportunity

The Ittleson Foundation provides grants for innovative, pilot, model and demonstration projects in the mental health field.

To apply, send a brief letter to the executive director by April 1, 2000 describing your organization and the work for which funds are being sought, along with a budget and evidence of tax-exempt status. If the activity falls within the current scope of the foundation's interests, you will be asked to supply additional information as required.

Their contact information: Anthony Wood, Executive Director, Ittleson Foundation, 15 East 67th Street, New York, New York, 10021, (212) 794-2008, www.IttlesonFoundation.org/

Conference

The International Association of Psychosocial Rehabilitation Services, IAPSRS, dedicated to promoting, supporting, and strengthening community-oriented rehabilitation services and resources for persons with psychiatric disability, will be holding its annual conference May 22 - 26, 2000 in Crystal City, Virginia. NCSTAC will be offering a special workshop on voter empowerment training at this conference. Register by April 1 at:

IAPSRS Conference, 10025 Governor Warfield Parkway, #301, Columbia, MD 21044-3357.
Only credit card payments may be faxed at (410) 730-5965. IAPSRS Fed ID: 23-2008207; IAPSRS Phone: (410) 730-7190; TTY: (410) 730-1723.

For further information, visit their website at www.iapsrs.org.

The Clearinghouse Prepares for Self-Advocacy Training

by Alan Marzilli, Education Specialist, the National Mental Health Consumers' Self-Help Clearinghouse

For years, mental health consumers have benefited from the many advocacy efforts of consumer supporter organizations, including a growing number of consumer-run organizations. However, in recent years, it has become evident that empowerment is possible only when consumers learn to become their own strongest advocates.

By advocating for consumers, you can help them obtain housing and better access to care. But by teaching consumers to advocate for themselves, you can help them gain valuable skills that will remain with them throughout the recovery process.

Some consumer supporter organizations already train consumers to advocate for themselves, but if your organization is looking to add such training or to improve your existing training, then help is on the way! Soon, you will be able to offer SELF ADVOCACY, a series of three workshops that help consumers develop the attitudes, skills, and knowledge necessary for achieving their advocacy goals.

During the next year, a working group--including the National Mental Health Consumers' Self-Help Clearinghouse, NMHA, and other organizations--will begin offering national training institutes to consumer supporter and consumer-run groups throughout the country. At these national institutes you will not only learn how to offer SELF ADVOCACY workshops in your community, but you will also receive written advocacy materials for distribution to consumers, as well as materials for promoting the workshops. Please contact the Clearinghouse to learn how you can attend a national institute.

The working group is still developing the SELF ADVOCACY curriculum, we would be very interested in having your group's input. If you would like to help, please complete and return the survey below. You can also take the survey on-line at http://www.mhselfhelp.org/sasurvey.html.


1. Have you personally, or your organization, ever offered self-advocacy training?

Was it well received?



2. Which audiences do you believe would benefit most from self-advocacy training?

Drop-in centers
Residential programs
Inpatient settings
Partial/day programs
Other (specify)



3. What general skills should be taught at self-advocacy workshops?




4. What specific issues should be included in a self-advocacy curriculum?

Getting a helpful case manager
Getting a helpful therapist
Obtaining a companion animal and related privileges
Making transition from inpatient to outpatient setting
Obtaining information about and control over medications
Being assertive about getting a workable discharge plan
Overturning a managed care decision denying referral to chosen provider
Overturning a managed care decision re: drug formularies
Obtaining SSDI benefits/SSI benefits
Continuing SSDI benefits while working part-time
Becoming eligible for work incentives programs
Asserting general patients' rights under state law
Maintaining greater control over records confidentiality
Asserting right to review medical records
Asserting rights regarding seclusion and restraints
Enforcing an advance directive
Preventing use of seclusion and restraints
Challenging outpatient involuntary commitment decisions
Asserting right to fully informed consent
Asserting right not to participate in research studies/medical education
Obtaining assistance with transportation for work/rehabilitation
Equal treatment regardless of race, gender, sexuality, or age
Serving on boards and committees

Others:





Completed by:
Name:
Organization:
Address:
Phone:
E-mail:

Thank you for your help.

Please return this survey to:

Alan Marzilli
Educational Specialist
National Mental Health Consumers'
Self-Help Clearinghouse
1211 Chestnut St., Ste. 1207
Philadelphia, PA 19107
(800) 553-4539 ext. 290
(215) 636-6312 FAX

amarzilli@mhasp.org
http://www.mhselfhelp.org

Becoming a Non-Profit Organization: A Case Study

by Kathleen McKinney

Two years ago, a dedicated group of consumers came together to form the board of directors for the MHA of Nebraska (MHA-NE). Their mission: to support mental health consumers in their state through advocacy, communication and education. Today the board is still primarily consumer-run and this group of leaders continues to learn about organizational development, a lengthy and complicated process. NMHA asked MHA-NE to be a case study site so that we can follow their progress and so that others may learn from their efforts. The board approved the request and this is the first of a series of articles to highlight their work.

Developing an organization is not for the weak. Among the many skills required are vision, leadership, commitment, diplomacy, and problem solving. During their first two years, the MHA-NE board had some obstacles to overcome but still developed a mission statement and by-laws and became incorporated. With all of that in place, they were ready to file for 501 (c)(3) status as a federal tax exempt non-profit organization -a status which will benefit them as they begin fundraising.

To complete the next steps of filing as a 501 (c)(3), the board held a planning meeting October 16-17 in Schuyler, NE at a retreat center. This ideal setting allowed the group to focus on the work at hand as meals were provided and lodging was on site. The fact that the retreat center was miles from the nearest town was also very helpful in limiting distractions for the participants.

These board members were volunteers who gave up a weekend with their families, jobs, and personal lives to work on behalf of an organization they believe in. It's likely that all would agree it wasn't always a fun process. But, after two very long days this board had successfully developed a strategic plan, a business plan, and an organizational budget. All of these steps are necessary to complete the tax-exempt paperwork but more importantly, these measures provided the road map for the organization to move ahead.

Members of the MHA-NE board include Jessica Cochrane, president; Debra Brandt, vice-president; Camilla Booe, secretary; Kathy Gayley, treasurer; Kellie Hoffmaster, advisor; C.J. Zimmer; Judy Morris; Loren Anderson; Mark Seem, and Lynette Massey. Beth Hickman of Nebraska Advocacy Services and Kathleen McKinney of NMHA helped facilitate the retreat.

For more information on how to develop a non-profit organization, please call the National Consumer Supporter Technical Assistance Center at 1-800-969-NMHA.

The Steps to Establishing 501(c)(3) Non-Profit Status: An Overview

The Steps to Establishing 501(c)(3) Non-Profit Status: An Overview

You must…
Formulate a mission statement.
Form a Board of Directors.
Develop a budget.
Develop a record-keeping system.
Develop an accounting system.
File for 501(c)(3) status.
File for state tax exemption.
File for local tax exemption.
Fulfill charitable solicitation law requirements.
You should…
Draft by-laws.
Develop a strategic plan.
Develop a business plan.

You can…
File articles of incorporation.

To learn more about how to establish 501(c)(3) status for your organization, contact NCSTAC and ask for our free publication on this subject.

SAMHSA Studies Consumer-Operated Services

by Jennifer Shibley, Project Coordinator, Constituency Building

In order to better address the complex challenges of recovery from serious and persistent mental illnesses, a study is in progress to assess the effectiveness of consumer-operated services. The University of Missouri School of Medicine's Missouri Institute of Mental Health is serving as the coordinating center, called the Consumer-Operated Services Program (COSP), for a federally supported grant funded by the Substance Abuse and Mental Health Services Administration (SAMHSA).

Specifically, the study focuses on the work of eight consumer-run sites in measuring the effectiveness of consumer-operated services when used as an adjunct to traditional mental health services. The study's consumer participants will receive either consumer-operated services with traditional services or just traditional services alone.

Three models of COS have been identified across the sites: drop-in centers (CA, FL, ME), peer support groups (IL, IA, PA) and education /leadership/advocacy training programs (CT, TN). During the course of this four-year program, which began in September 1998, some 2,500 consumers will take part in the research. As a secondary goal. the project aims to create positive and productive partnerships among consumers, service providers, and researchers. Dr. Jean Campbell, a consumer/researcher at the Missouri Institute of Mental Health, heads the coordinating center, as they work in conjunction with Ralph O. Williams Sciences in Rockville, MD.

The evaluation and performance measures are based on the following:

* Effects on empowerment, housing, employment, social inclusion and satisfaction with others
* Program costs, as well as the effects of costs for inpatient hospitalization, crisis intervention, and emergency room utilization
* Cost offsets in housing, criminal justice, vocational rehabilitation, physical health care, and income supports
* Process measures (e.g., model fidelity, common program elements) demonstrating the effectiveness components of COS
* Development of technical assistance products for ready use in the field

The coordinating center has developed a COSP Internet web-site (www.cstprogram.org) with listserve interface that is a model for communication across the multi-site projects. The following are a few of the COSP Sites:

Florida Project, The PEER Center
The PEER Center, Inc.
Dianne Cote
Email: peerctr@bellsouth.net

Iowa Project, Iowa Mental Health Recovery and Advocacy
Boston University
E. Sally Rogers, Principal Investigator
Erogers@BU.Edu

Pennsylvania Project, The Friends Connection
Mental Health Association of Southeastern PA
Joseph Rogers, Principal Investigator
jrogers@netreach.net

Tennessee, Bridges Tennessee
Vanderbuilt University
Thomas Summerfelt, Principal Investigator
Tom.Summerfelt@vanderbilt.edu

Connecticut, Advocacy Unlimited
Mount Sinai School of Medicine
Susan Essock, Principal Investigator

For additional information about the COSP study, please contact the Missouri Institute of Mental Health, Program in Consumer Studies and Training, 5400 Arsenal Street, St. Louis, MO 63139, Phone: (314) 644-7829, Fax: (314) 644-7934, or visit the web-site: www.cstprogram.org/cosp/sites/index.html.

Federal Legislative Update

By Al Guida, Vice President of Government Affairs and Jason Marino, Policy Analyst

NMHA played a significant role in the passage of legislation and the development of the FY 2000 federal budget in which Congress provided the largest increase in history for mental health programs. This historic budget will help improve the quality of life for millions of Americans suffering from mental illness. Following are brief descriptions of some of these recent mental health legislative victories:

Work Incentives Bill
Congress has passed the Ticket to Work and Work Incentives Improvement Act with overwhelming bipartisan support. This powerful piece of legislation is intended to break down the barriers to employment for people with disabilities. This legislation would allow beneficiaries the support they need to move from benefit dependency to self-sufficiency. This bill would allow uninsured, disabled American workers who qualify for SSI or SSDI to buy into the Medicaid program. In addition, this legislation increases funding for states to design, establish, and operate an infrastructure to support working individuals with disabilities. President Clinton is expected to sign this bill into law in December 1999.

Mental Health Block Grant
The fiscal year 2000 federal budget allocates a record-breaking $67 million increase for the Mental Health Block Grant, thus allocating $355 million. The funding increase will allow states to expand efforts directed at: (1) reducing homelessness and expanding intensive community-based mental health services for de-institutionalized adults with severe mental illness or dual diagnosis, and (2) children with serious emotional disturbances (SED) who are dually-diagnosed or are at high risk of being placed in out-of-home foster care and the juvenile justice system.

Children's Mental Health Services Program
NMHA's advocacy led to a $5 million increase in funding for the Children's Mental Health Services Program, allocating $83 million in the FY 2000 budget. This program will assist approximately 34,000 children who are diagnosed with a serious emotional disturbance (SED) and expand comprehensive, community mental health services.

School Anti-Violence Initiative
For the FY 2000 budget, Senator Arlen Specter (R-PA) was successful in allocating $850 million in federal funds for the Youth Violence Prevention Initiative to address the tragic incidents of violence that have occurred in our nation's schools. NMHA was influential in the FY 2000 budget allotment of a record-breaking $80 million for the Center for Mental Health Services (CMHS) to carry out their school-based anti-violence activities. This represents a $40 million increase over last year's allocation. This will essentially double funding devoted toward their anti-violence prevention initiatives, such as the $25 million allocated to the Safe Schools/Healthy Students grant program, and the $9 million awarded to the technical assistance center housed by NMHA which supports the Safe Schools grant program.

Veteran's Mental Health Benefits
Congress approved a $1.7 billion increase in funding for veterans with mental illnesses. Prompted by NMHA's efforts, the increase in funding is the largest in at least ten years- helping thousands of veterans get the help they need. The appropriated increase is designed to compensate for the restructuring of the federal Veteran's Health Administration of the Department of Veteran's Affairs. The restructuring, which led to a drastic cut in the number of inpatient psychiatric beds, was an attempt to shift treatment toward outpatient services.