NAMI North Carolina Affiliate Tool Kit | Member to Member Essays

Throughout the kit, add a series of sidebars titled, “Member to Member,” in which you include brief essays by members on how their affiliate solved a particular problem or staged a special event. Some possible topics—

• How We Started Our Affiliate
• How We Recruit New Members
• How We Get New Members Informed & Involved
• How We Train New Officers
• How We Delegate Responsibilities & Tasks
• How We Get Members to Attend Our Meetings
• How We Used a Member Survey to Strengthen Our Affiliate
• How We Built a Clubhouse
• How We Respond to Requests for Information
• How We Respond to Mental Health Care Issues in the News
• How We Keep Complete, Accurate Records
• How We Involve Mental Health Care Consumers in Our Affiliate
• How We Work With Area Law Enforcement Agencies
• How We Reach Families Through Mental Health Care Providers
• How We Reach Families Through Churches
• How We Help Our State Mental Health Agency Provide Better Service
• How We Raise Money
• How & Why We Incorporated Our Affiliate
• How & Why We Secured Tax-Exempt Status
• How We Lobby Our Legislators
• How We Get Our News Releases Published in Our Local Newspaper
• How We Use the World Wide Web to Publicize Our Affiliate
• How We Create Opportunities to Speak to Area Civic Groups
• How We Use Our Newsletter to Strengthen Our Affiliate

You may use the “Telephone Script: Share Your Affiliate Success Stories” to solicit Member to Member essays. In North Carolina, board members made the calls to selected affiliate leaders.

Telephone script: Share Your Affiliate Success Stories

NAMI [Your State] is working on an Affiliate Tool Kit.

We want to include some real-world examples of ideas and approaches that work, so we’re looking for success stories about all aspects of running an affiliate.

Is there any particular story you’d like to share?

PROMPT WITH EXAMPLES FROM TOOL KIT OUTLINE.

Facts to Gather:

Affiliate name:

Source name (Please verify spelling):

Source phone number:

Testimonial topic:

Purpose or goal for event or project:

When the event or project took place:

Members who played major roles:

Steps involved in planning and execution:

Results:

Contact name and telephone number:

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Sample Essays from NAMI North Carolina:

Member to Member: Why Our Community Needs NAMI Wilson County

by Jerney Minshew, President
NAMI Wilson County

I’m proud of how our affiliate—NAMI Wilson County—meets so many important needs in our part of North Carolina. Our support system is well established, with veteran members offering their knowledge and experience to help our steady stream of newcomers. We have some real old-timers here who are knowledgeable enough to be psychiatrists’ psychologists.

Traditionally, we have collaborated—rather than competed—with other community organizations whose missions are compatible with ours. Besides serving our community, we strongly believe such collaboration results in more effective advocacy.

Several of our members serve as directors of these organizations, bringing our concerns and perspectives to bear on their decision-making. Two of us serve on the local Mental Health Association Board, and I’m on the Human Rights Committee as well as the Area Mental Health Authority Board.

We’ve worked with our local Mental Health Association on housing and Operation Santa Claus and with Food Lion on a fund raising event. We also raise money by selling greeting cards from The National Alliance for Research on Schizophrenia and Depression.

For more information, contact Jerney Minshew at 252 243‑4699.

Member to Member: How We Jump-Started Our Affiliate

by Elaine Purpel
NAMI Guilford County

Four years ago, NAMI Guilford County appeared to be dying. Membership had dwindled to fewer than half the previous members. Very few attended education and support meetings, and no one could be found to serve as president. After seriously considering disbanding the affiliate, the board decided to hang on one more year without a president and divide the work equally among board members. Not only did NAMI Guilford County survive, it has thrived. Today, membership is at an all time high, attendance at education meetings is very respectable, and the treasury has never looked so good. To learn more details, contact Elaine Purpel at 336 275-7127.

Member-to-Member: Small is Beautiful

by Charles Owens, President
Person County AMI

Operating as we do within the culture of a small rural county, we have only a handful of members. Though small in number, Person County AMI is big in heart and service.

We meet monthly from September through May for education and support, with about 10 members attending regularly. Meetings featuring local speakers or educational videos are the most popular.

Two of our members serve on the Area Mental Health Authority Board, and I am trained as a Family‑to-Family teacher.

With several ministers among our members—including me—our affiliate has naturally reached out to local churches, supplying speakers and a bulletin insert during Mental Illness Awareness Week. In the future, we’d like to sponsor a workshop for clergy. Next spring, I plan to work with a partner to teach a Family-to-Family course.

For more information, contact Charles Owens at 336 597‑3916

Member to Member: Organization Makes Our Small Affiliate a Big Success

by Lucille Clontz, President
NAMI Union County

We have 12 members, with five or six attending meetings regularly. Although we are small in number, the help and hope we give each other is our greatest success story.

Our decisions to elect officers and to separate our educational and support meetings are the keys to our accomplishments. We especially appreciated the advice and encouragement we received from Board member Ernest Shumacher in making these decisions.

Another way we leverage our small size is through mutual support and collaboration with Union House, our local clubhouse. Clubhouse Director Jim Shaw chairs our affiliate program committee. We’ve worked together on social events and a Food Lion-sponsored fund-raiser. Our current joint project is a yard sale to be held at the clubhouse.

For more information, contact Lucille Clontz at 704 882‑1293.

Member-to-Member: How We Run Our Affiliate

by Dorothy James, President
NAMI Rockingham County

Organization and shared responsibility are the keys to keeping our affiliate running smoothly. We have also found our operations benefit greatly from keeping meetings focused on a single purpose. By separating education meetings, support meetings, Family-to-Family education and affiliate business meetings, we’re able to accomplish so much more at each meeting.

Every one of the ten to twelve members who attend meetings with some regularity has a responsibility. Besides helping things run better, the involvement makes people feel they are giving something back to the group as well as receiving support in expressing concerns about their loved ones.

Although our group’s size is modest, we are well-organized. We have a telephone tree in place, and we publish a newsletter to keep our members informed. Other areas of responsibility for our members include organizing social events, providing member services and advocating our cause with legislators.  Our pioneer Family-to-Family teacher, Virginia Morton, now facilitates our support group. Carol Matthieu and Maude and Joe Brumbeloe will teach a Family-to-Family course this fall. 

For information, contact Dorothy James at 336 548‑5112.

Member to Member: Would a Young Family Find Your Affiliate Welcoming?

by Diane Weaver
NAMI Four Seasons

As one of the few young family members in my area, I am often asked how an affiliate can prepare itself to include young families. I am amazed to find that knowledgeable, supportive members do not realize how much they already offer a family struggling with a childhood-onset brain disorder. The unique features of childhood-onset disorders are easy to learn, and ample resources are available by phone. Here are some tips: Realize that your affiliate already has much to offer young families. You are perhaps the first people the parents have met who believe they did not cause the disorder. Well-meaning professionals, friends, and relatives have been bombarding these parents with advice, not realizing the child’s disorder is biologically-based. NAMI affiliate members know that unsolicited parenting advice is inappropriate.

Your example, empathy, and caring are healing for these distraught parents. Listen, affirm, and support, as you would any newcomer. You understand the mental health system and SSI. These parents probably need guidance navigating the systems.

You understand the need for persistence in pursuing the right mix of medications and dealing with side-effects. This is often a discouraging process for young families. Your longer-range perspective is valuable.

Don’t worry about overwhelming or shocking young families with the symptoms or treatment issues of late-adolescent- or adult-onset disorders. These families probably have some stories that would curl your hair! Childhood-onset disorders are severe and continuous. The parents are already dealing with several of the following:

• Impulsiveness
• Continuous mixed mania
• Depression
• Suicidal tendencies
• Runaway attempts
• Psychoses
• Obsessions
• Grandiosity
• Tics
• Compulsions
• Rages

Stock NAMI and NAMI North Carolina brochures on childhood-onset disorders, such as mood disorders, anxiety disorders, behavioral disorders (ADHD, oppositional-defiant disorder, conduct disorder), Asperger Disorder, and Tourette’s Syndrome. Include information from these brochures or other reliable sources in every affiliate newsletter. An excellent reference is Harold S. Koplewicz’s book, It’s Nobody’s Fault, available through NAMI, at your library, and at many bookstores. Remember the NAMI North Carolina Help Book! Give the family a copy of this invaluable reference and point out sections on child and adolescent disorders, educational issues, services, and Willie M.

Ask the family to join the affiliate and enroll them in the statewide Young Families Network by calling the NAMI North Carolina’s Helpline at 800 451-9682. The state office can pair the family for telephone support with another young family elsewhere in the state, if requested. NAMI North Carolina Spring Conferences feature workshops for young families. Call NAMI at 800 950-NAMI to add the family to our national organization’s mailing list for the newsletter, “Because Kids Grow Up.”

Refer parents to the Exceptional Children’s Assistance Center (ECAC) at 800 962-6817 for free, expert guidance on strategies to get a “free and appropriate” education for the child. They may call parent coaches at ECAC as many times as needed to clarify the confusing IEP (Individual Education Plan) process. ECAC will send them a packet of materials and also has an excellent newsletter and lending library.

Sometimes a school expels a child for behavior related to the brain disorder. This is illegal. The school must come up with an adequate positive behavioral plan, including accommodations to allow that child to participate successfully. Self-contained “BEH” (Behaviorally-Emotionally Handicapped) rooms are generally not an appropriate placement and may actually worsen the child’s condition. For help, call the Governor’s Advocacy Council for Person’s with Disabilities (GACPD) at 800 821-6922 for expert advice and support.

Consumers can help younger children and adolescents by sharing coping strategies (when asked) with them and their families. Consumer insight into the illnesses is invaluable to parents trying to understand their child’s puzzling behaviors. Your affiliate’s consumer members embody hope that this child can grow up and manage the illness. During a crisis, the younger family may need help with involuntary commitment, transportation, or care of another child or children. There may also be times—when changing medications, for example—when it is best for the child to stay out of school for a few days. If the parents work, they may need care for the child during these times. Any help affiliate members can offer is a blessing to these families.

It is wrenching to leave a child in a locked mental ward or to seek residential placement. These are times of profound grief, isolation, and self-doubt. A telephone call, dinner invitation, or home-cooked meal combined with a listening, nonjudgmental ear may ease the family’s isolation and help them process the grief. Many times these families cannot tell relatives, neighbors, coworkers, or church members. You can be of tremendous support.

In conclusion, I hope I have convinced you that your affiliate could be a haven for young families, no matter the age of the present members. State and national child and adolescent coordinators stand ready to give you all the technical assistance you need. The warmth and hospitality are up to you.

Member to Member: Taking it to the Streets

by Dan & Betty Lane
Western Carolina AMI

A year ago, by responding creatively to a routine invitation, thinking big and taking risks, Western Carolina AMI took NAMI’s Campaign to End Discrimination directly to an estimated 1,000 citizens of Asheville.

As one of many community groups asked to participate in Asheville’s 1997 Bicentennial Celebration, our 150-member affiliate planned and implemented a series of successful centennial events honoring well-known people with mental illness who had contributed to Asheville’s history.

Drawing on the time, talent and expertise of our members, we created a planning committee of 12, headed by Maggie O’Connor, a historic preservationist for the City of Asheville. A member who works for the local newspaper helped with publicity. Many of our consumer members were involved at all levels of the effort, presenting skits and helping with publicity.

Our special events featured such figures as author Thomas Wolfe, actress and author Zelda Fitzgerald, landscape designer William Olmstead and American Cherokee Chief Will Thomas. From Cherokee, North Carolina, we brought in and displayed a large wall mural created by Native American children suffering from mental illness. We sponsored a highly successful “Mad Hatter Tea Party” based on Zelda Fitzgerald’s illustrations for Alice in Wonderland. Dan Lane contributed his expertise as a historian, writing and producing two one‑act plays.

We believe the results of our efforts were well worth the hard work required. NAMI agreed, recognizing our efforts at the July 1998 national convention.

For information, contact Dan and Betty Lane at 828 456-3024.

Member to Member: Lunch with ‘Les Girls’

by Beth Greb
NAMI Wake County

Feeling kind of down in the doldrums or just wanting a good chat with friends? Come to lunch with “Les Girls,” Wake County’s women’s luncheon club.

Begun about five years ago by a mother whose mentally ill daughter was lonely and socially isolated, the luncheon group meets an important need for support in a pleasant social setting. “Les Girls” meets on Saturday once a month for a buffet lunch at a local restaurant. The dress is casual, and no reservations are required.

Originally directed to consumers, “Les Girls” now attracts a cross-section of about 35 women who attend from time to time. Birthdays are remembered, and door prizes (costing less than $5) add to the fun. We keep a list of attendees and call them monthly to remind them of an upcoming luncheon—a key to the group’s success. The callers are volunteers who signed up at the beginning of the year to do the calling for a particular month. Our volunteer coordinator prepares the sign-up sheet and reminds each volunteer when the time comes for them to make their calls.

“Les Girls” provides a great social outlet and gives us a chance to meet a variety of consumers on a social level. Many of us who are not consumers see mental illness from the personal perspective of our own family members. By exposing us to other consumers, “Les Girls” has reduced the stigma among our affiliate members who have come to see the consumers in our group as friends.

For information, contact Beth Greb at 919 846-8180.

Member to Member: Behind the Scenes at the North Carolina General Assembly

by Beth Melcher, Ph.D., Executive Director
NAMI North Carolina

Despite public cynicism, I always am amazed at our system of government and the fact that it actually works.

In the legislature, elected individuals from all walks of life and persuasions debate the needs, issues and concerns of our citizens. It is a microcosm of who we are and provides a forum to seek, above all, compromise and agreement on issues that could divide us. It is not a pretty process as it lurches along, but for the most part, it works. I don’t share the public cynicism. The reality is that any constituency can influence the political process, provided constituents—

• Are organized
• Are articulate
• Present workable solutions instead of merely identifying problems
• Have cultivated a broad base of support

If we haven’t been as successful as we’d like in the legislature advocating for the issues that concern us, then we must get better at presenting our concerns.

The best example of successful advocacy is our recent fight for insurance parity, which overcame what initially seemed like insurmountable odds. How did we succeed?

We had strong leadership through the sponsor of the bill and those leading the coalition of groups supporting parity.

We did our homework, got our facts rights, and took a great deal of time educating legislators and the media.

The grassroots responded. Constituents contacted legislators and joined us in sending a clear message that this is an important issue to the folks back home.

Confident of the public support, legislators were able to reject pressure by lobbyists representing the insurance industry.

I believe the success with parity is an experience we can repeat to address funding and service needs.

Advocacy works. For information, contact Beth Melcher at 919 788-0801.