February 2000

New Year, New Century, New Team!
by Beth Melcher

To secure NAMI North Carolina’s continuing growth and development well into the new millennium, the Board of Directors has hired a new executive director, Paul Bamford, Ph.D., and created a new senior-level staff position, director of government relations, for Beth Melcher, Ph.D., who had served as executive director since 1994.

In explaining the board’s decision last fall to spin off government relations duties from the executive director position, NAMI North Carolina President Eileen Silber cited the goals of sustaining and accelerating our organization’s recent growth and development while strengthening advocacy efforts.

"Under Beth Melcher’s leadership, we’ve grown so much during the past several years," says Silber. "At the same time, Beth has spent more and more time building key relationships and earning the respect of legislators and government officials.

"By separating government relations responsibilities from the executive director’s duties, our organization can move forward into the new century with even greater speed and efficiency, ready to support, educate and advocate as never before."

Bamford brings to the executive director job 13 years of senior management experience in both for-profit and non-profit mental health organizations. His primary expertise is in finance, staff management, strategic planning and grants administration.

The board’s executive search committee spent several months and considered more than two dozen candidates for the position before offering it to Bamford, "In Paul Bamford, we found the ideal combination of management skills and experience we wanted to complement Beth’s abilities and professional interests in advocacy," says Silber.

"NAMI North Carolina has so many strengths which have produced such remarkable achievements," says Bamford. "But we all know there is much yet to achieve. There are many barriers—stigma, inadequate services—to overcome. Conquering such barriers is a great challenge, and I am grateful for the opportunity to join in this endeavor."

As executive director, Bamford will oversee administration, fiscal and program management and organizational development for NAMI North Carolina.

As director of government relations, Melcher will represent NAMI North Carolina to members of the General Assembly and state government agencies. She will also work with affiliates and members to help them advocate more effectively.

"With Paul as our new executive director, our organization can grow and develop as never before," says Silber. "With Beth as our new director of government relations, we can be sure the concerns of our growing membership will stay at the forefront and will be presented to the most appropriate people in ways most likely to produce real, lasting improvements."

"In considering the new position, I spent a great deal of time reflecting on my strengths and the best use of my abilities to help NAMI North Carolina continue growing," Melcher says. "I realize my strengths lie in the area of government relations, and I am very excited to take on the new challenge of developing our advocacy efforts even further."

Bamford, whose first day on the job was January 18, says he looks forward to meeting and working with NAMI North Carolina members. "I begin with a keen sense of how little one person can do by himself and how much we can all do together," says Bamford, "and I am counting on our members to share their experiences and insights with me from the grassroots level—-the true source of NAMI North Carolina’s strength and vitality."

Paul Bamford, Ph.D., NAMI North Carolina’s new executive director

Director of human resources and contracts manager, Cardinal Clinic, Fayetteville, 1989-2000

Vice president, CHAPS Community Health Alternatives, Inc., Raleigh, 1986-89

Projects and data center manager, NC Office of State Personnel, 1981-86

Research associate, NC Administrative Office of the Courts, 1977-81

Visiting assistant professor of philosophy, Duke University, 1974-77

Ph.D., University of North Carolina

M.S. Management, NC State University

B.A., Claremont McKenna College,

Claremont, CA

Passage Home, Inc., agency providing transitional housing for homeless

Fayetteville/Cumberland County Advocacy Council for Persons with Disabilities

Raleigh Mayor’s Committee for Services to Persons with Disabilities

Fasten your seat belts because the road just got even bumpier. It’s difficult to hazard a guess as to how this very complicated public system of care for mental health, developmental disabilities and substance abuse will become a logical and coherent program.

To begin with, the flood relief package as originally proposed by Governor Hunt would have resulted in direct service cuts. This was deflected and softened because your strong advocacy efforts were heard by some of our senators and representatives who proposed amendments to protect service dollars and minimize the impact of cuts on those with mental illness. These were courageous efforts on our behalf. But the estimated shortfall in the state budget does not bode well for our needs in the short legislative session.

The next unsettling bit of news was the announcement that Dr. John Baggett had resigned as Director of the Division of Mental Health, Developmental Disabilities and Substance Abuse.

He has been replaced by Dr. Iverson Riddle who comes to this position from the Western Carolina Center, a mental retardation center, where he is the director. Certainly Dr. Riddle needs to have some settling in time to learn the intricacies and inter-relations of the division and the area programs which provide the services for our family members and we indeed hope that he proves to be a very fast learner.

The study of the area programs and state hospitals, under the direction of State Auditor Ralph Campbell, will be concluded very shortly and its recommendations will be presented. What they will be and how they are implemented will determine the shape and scope and adequacy of the public system of care as we move into the 21st century.

It is vital that we stay alert and responsive as these diverse pieces of the puzzle are put together. The very treatment our family members will receive depends on it.

Recovery is Possible
by Stephanie Gilmore
NAMI Wake County

I was diagnosed with bipolar disorder in 1986 when I was 20 years old. At the time, my doctor told me that within two to five years, I would be back to living a normal life.

He couldn’t have been more wrong.

I proved to be treatment resistant to all the medication, therapy, and hospitalizations that were used in an attempt to make me well. Instead of living a normal life, I went in and out of psychosis for most of my twenties, every day losing more and more hope that I would ever be well.

Finally, as a last resort, my doctor put me on the then new and promising medication, Clozaril. After taking Clozaril for almost a year, I came out of psychosis and have since been able to live a normal life.

Over the past five years, I have been able to hold down a part-time job, get an apartment, and be very active in advocating for persons with mental illness. I am presently back in college part-time.

Some call my recovery miraculous, but I’ve had to work hard at my recovery as well.

It is here that I want to share some of the things I have done in my recovery and in leading a happy and productive life.

I hope that in sharing some things I have done that I can help others struggling with their own illnesses.

• Get educated. Learn about your illness and what you can do to be well.

• Find a good doctor and do what he or she says. Take your medicine faithfully.

• Watch your stress and work on getting tougher and stronger.

• Build a strong support group around you--doctors, social workers, family, friends.

• Go to support groups. There are a lot of them and you will find you are not the only person out here dealing with a mental illness.

• Make goals for yourself and your life. Expect something of yourself and go for it.

• Have faith in your God and in yourself. Believe you will get well.

• Exercise—-especially if you have depression.

• Read autobiographies of people who have suffered from severe mental illness and have overcome their disability. There are a lot of success stories out there!

• Be thankful and mindful of the age we are living in. Those with brain disorders have never had more choices.

• Stay positive and count your blessings. There is a bright side to almost anything.

• Hold you head high. Don't let ignorant and uneducated people make you feel shameful of your illness.

• Always remember that you are a person with an illness. You are not the illness.

• You can be in control of your life and your illness. Know that.

• And finally, don't give up! Be willing to do anything to be well.

The Special Session on Hurricane Relief

by Beth Melcher

Just like a hurricane, the General Assembly blew into Raleigh in December threatening to spread Governor inspired disaster on the Mental Health, Developmental Disability, and Substance Abuse Service System. The Governor's original plan had envisioned up to $27 million in cuts to the system in capital, recurring, and one-time funds.

Legislators heard constituent outrage at the proposed cuts and a chorus of legislators stood up to defend the system. A number of members proposed amendments aimed at protecting service dollars and minimizing the impact of cuts on clients.

We owe these legislators a great deal of thanks for their courage to stand up to the Governor's proposals on our behalf. Please take a moment to thank them.

The legislative honor role includes

Rep. Martha Alexander; Rep. Cherie Berry; Rep. Lanier Cansler; Rep. Beverly Earle; Rep. Ruth Easterling ; Rep. Sam Ellis; Rep. Theresa Esposito; Rep. Charlotte Gardner; Rep. Verla Insko; Rep. Edd Nye; Rep. Carolyn Russell; Rep. Trudi Walend; Senator Jim Phillips; and Senator Tony Rand.

Thanks to the many NAMI North Carolina members who took the time to contact legislators with their concerns. We really made a difference.

It has been a long time since we have heard such strong support from legislators defending the MH/DD/SA system against cuts. Now we have to keep that momentum going through the short session.

Although we were able to soften the blow, funds were still lost from the system.

A detailed list of cuts has not been released (only general categories) but the following cuts are likely to occur:

$5.4 million, Whitaker School Construction

$5 million, Cherry Hospital Youth Unit Construction

$6.5 million, Lapsed Salary

$1.6 million, Miscellaneous

     $18.5 million Total

The bottom line doesn’t change…funds for poor and disabled people should never have been used to fund the hurricane relief package.

We have a real job ahead of us in the short legislative session. The combination of the intangibles tax payback along with the Governor's commitment to teacher raises and Smart Start expansion will, according to Dan Gerlach of the Budget and Tax Center, result in an estimated shortfall of $ 480 million.

But we should be very proud of what we accomplished in the special session. Funds for services to clients were protected. We made great strides in raising awareness and getting the attention of lawmakers.

Advocacy works.

February 10

NAMI North Carolina’s training for School Nurses on Emotional, Behavioral and Mental Disorders in Children and Adolescents in Fayetteville.

February 16-18

15th Annual Vocational Alternatives Conference, Uniting for Supported Employment, Greensboro-High Point Marriott Airport, Greensboro. Call NAMI North Carolina (1-800-451-9682) for registration form.

April 14-16

Family-to-Family Support Facilitator training in Brown Summit.

Hope for the New Millennium, in Winston-Salem.

Reserve the date; plan to attend.

FYI

Division Changes

On December 22, 1999, Department of Health and Human Services Secretary David Bruton, M.D. announced that effective January 1, Division Director John Baggett will serve as special assistant to the director of Dorothea Dix Hospital. His position will focus on planning for clinical services.

Baggett requested a change in position in order to "continue to play a role in working toward constructive change that will benefit the clients of our system, but....a role that is less stressful than my current one."

Iverson Riddle, M.D. has been appointed acting Division Director. Riddle is the Director of Western Carolina Center, a mental retardation center in Morganton and will maintain his headquarters in Morganton.

Jann Harris, a special assistant in the Secretary’s office, will now serve as a special assistant to Riddle. Terry Stelle will remain as deputy director and be responsible for day-to-day operations.

Baggett was NAMI North Carolina’s first executive director.

DISCOVERY
Do Medications Lose Their Efficacy?

Studies have shown that patients should continue to take an antidepressant or mood stabilizer after recovering from an episode of major depression or bipolar disorder because this is highly successful in preventing relapses.

Pharmacological tolerance—-a reduction in the brain’s responsiveness to drugs—-can cause illness to recur in a minority of patients who are taking adequate doses of mood stabilizers.

Of 66 patients with bipolar disorder:

• 34% had responded to lithium, but began to have manic or depressive episodes suggesting a development of drug tolerance.
• 14% responded well to lithium for 5-18 years, stopped taking it, relapsed, and were unresponsive to the drug when it was resumed at equal or higher doses.

This pattern has been reported in similar proportions of other groups of patients. The problem has been observed in some patients with depression who repeatedly discontinue maintenance antidepressants treatment.

A pattern of tolerance has been found in patients who initially responded well to mood stabilizers other than lithium.

• 44% of the 29 patients who responded to the anticonvulsant carbamazepine or Tegretol (usually in combination with lithium and/or other drugs) eventually developed a tolerance and relapsed within two to three years.
• 27% of well-stabilized patients taking valproate or Depakote also relapsed after two to three years.
• Tolerance may develop to the new anticonvulsants lamotrigine and gabapentin when they are used for long-term prevention.

Preliminary clinical data suggest provisional recommendations to reduce the danger of tolerance and recurrence:

• Prophylactic treatment should be started as early as possible in the course of the illness
• The most effective drugs used alone or in combination when possible.
• Prescribe a higher rather than lower and marginally effective dose of the mood stabilizer or antidepressant , as inadequate doses may accelerate the development of tolerance.

When two drugs with different mechanisms of action are combined, more patients may respond with the chance of developing a tolerance reduced. Fewer than a third of patients with rapid mood cycles responded to lithium or carbamazepine alone in the first or second year of treatment, but more than 50% responded to both drugs in combination in the third year. Switching to a drug with a different mechanism may also reverse tolerance once it has developed. If a tolerance to the new drug then develops, the original drug can be reintroduced, and sometimes will have regained its effectiveness.

FAMILY TO FAMILY

by Beth Greb

The Family-to-Family Education Course was introduced in North Carolina in the spring of 1996 by Dr. Joyce Burland. The first classes were taught in local affiliates beginning in September of 1996. The Family-to-Family education program has mushroomed here.

This course has provided a quality service to the community, has created increased name recognition for NAMI, and has strengthened the affiliates offering the course. NAMI North Carolina aims for the next phase of the program, trained facilitators for support groups, to take off in a similar way. A facilitator training will be held in April.

• Number of trained teachers, 118
• Number of class locations, 25
• Number of classes, 62
• Number of graduates (individuals), 910
• Number of families represented by graduates, 784
• Number of graduate families who are members, 501
• Percent of graduate families who are members this year, 64%
• Percent of graduate families who were members last year, 53.5%
• Percent of graduate families who have made
• donations to NAMI North Carolina, 35%

Where do we stand financially?

We are in the third year of a three-year grant from Kate B. Reynolds Charitable Trust. This grant covers expenses for new sites. The intention of the grant was to get us started. Eventually we need to make these classes self-sustaining.

How can Family-to-Family become self-sustaining?

Because the course is a community educational service, it fits into a unique category that lends itself to community foundation support.

Because the course fulfills the need for education, for which area programs have funding, some support can come from the mental health system.

Because the course benefits the affiliate, affiliate assets are wisely spent on the program. One enterprising teacher has gone door-to-door collecting small checks from local businesses. Other members could be asked to help the teachers in this sort of enterprise.

NAMI Notables debuts with a spotlight on NAMI North Carolina’s Board President Eileen Silber. Eileen and her late husband, Dave, joined Greensboro AMI in 1984 after learning that their son had schizophrenia. Eileen remembers being "desperate for information and help."

Today, Eileen feels gratified to "offer a listening ear" to others and to comfort and give hope that there is help, that medicines are better than ever and that families are not alone in their struggles. "There is great personal satisfaction in it for me; to reach back and offer a helping hand to others in the way I first received help. This has been one of NAMI’s cornerstones and from it, we grow stronger."

In the years since mental illness struck her family, Eileen has become an exceptional advocate for persons with mental illness. She has served on the Board of Directors of NAMI Guilford County and on the Board of the Guilford County Area Program for MH/DD/SA where she chaired the Mental Health Committee. Also, Eileen was a member of the Board of Directors of the N.C. Council of Community Programs.

Elaine Purpel, a founding member of NAMI North Carolina, said that "Eileen brings intelligence, competence, and wisdom to her role as an advocate." NAMI North Carolina board member Billie Gilfillan credits Eileen’s success to her unwavering determination and unflagging and intense concern for individuals with mental illness.

Eileen challenges NAMI members to "work toward telling everyone about mental illness, a biological disease of the brain and that new medicines and treatments work. Once that basic message has been spread," she says, "the other pieces of the puzzle fall into place—-equitable insurance, equitable and adequate money for care and rehabilitation and housing."

Survey Says
by Zanna Cipriani

According to our membership survey, NAMI North Carolina has remained true to its mission of support, education and advocacy for persons with mental illness and their families and friends. Or...there continues to be such a great need that members, after 15 years, continue to value such services. Of course, both statements are true.

Out of the 93 responses received, respondents said they joined our organization because of education (82.6%), support (58.7%) or advocacy efforts (17.4%). Since some respondents gave several choices and others only one, the numbers are not balanced. On the affiliate level, the majority of respondents said they attend affiliate meetings for support (47.8%) and education (30.4%).

About half of the respondents told us that we were doing a good job or did not give us any feedback on improvements. Other suggestions for improvement included publicizing meetings regularly, hosting better programs and improving outreach efforts to increase membership.

Our membership said the most valued programs were 1) Clippings, 2) advocacy, 3) Family-to-Family, 4) Helpbook and literature and 5) Helpline. Many respondents chose to rate only those they had familiarity with, which skews the results somewhat. However, from our experience the priorities seem to be close to what was stated.

The general consensus on improvement seemed to lean toward increased outreach, more program publicity and greater organizational visibility. Several interesting comments included having a separate consumer group and providing transportation to those who cannot drive. A number of older members requested daytime meetings since they do not drive at night.

NAMI, NAMI North Carolina, NAMI (local affiliate)...What's in a name? What does it mean? Webster's Unabridged Dictionary defines affiliate as a branch organization, a subsidiary, or an auxiliary.

You may join NAMI at any of the three levels, but why not start at the affiliate? By joining the local affiliate, you automatically become a member of all three levels of NAMI. If you think in terms of government, it might help to clarify what the three levels of NAMI are.

YOU, the affiliate member, vote for your local president and officers who manage the affiliate which provides YOU with support groups, educational meetings, Family-to-Family, representation on area boards and other policy making institutions in the community, and a local contact person for YOU to call. A local newsletter keeps you informed on affiliate activities.

The NAMI North Carolina Board of Directors and Executive Director provide representation and guidelines for affiliates on state issues. NAMI North Carolina provides training for affiliate leaders, Family-to-Family teachers and support facilitators. NAMI North Carolina plans both a conference and a fall institute and provides grants for affiliate activities. Clippings keeps you informed on state issues.

NAMI provides national guidelines for the states and affiliates, hosts a convention once a year, and provides the training for programs such as Family-to-Family. NAMI furnishes national public service messages and advocates at the federal government level for expanded services for our family members who have mental illnesses. The Advocate keeps you informed on national issues.