July/August 2000

For NAMI North Carolina, the highlight of the national NAMI conference in San Diego, California in June, was the awards ceremony: WE WON!

NAMI North Carolina received NAMI’s 2000 "Outstanding State Organization Award" at the annual business meeting on June 17. In presenting the award, national NAMI President Jacqueline Shannon of Texas saluted NAMI North Carolina for its advocacy on behalf of persons with mental illnesses and their families, and for developing programs which have been shared with other NAMI state organizations around the country.

Accepting on behalf of NAMI North Carolina, State President Eileen Silber extended her thanks to all NAMI North Carolina volunteers, our Board of Directors, and to the staff at the state office in Raleigh. "We are proud to be recognized for our hard work," Ms. Silber said. "But we recognize that much remains to be done."

The 2000 national award recognized NAMI North Carolina for developing our "Affiliate Tool Kit"—-a step-by-step manual for organizing local NAMI chapters, which has been shared with other state organizations through the national NAMI web site. National Vice President Dr. Fred Frese described the Tool Kit as "an invaluable tool for preparing affiliates for leadership."

Other initiatives which were singled out by the national NAMI staff and Board include:

• our program for reaching local churches, centered around the book Creating a Circle of Caring by former State President Shirley Strobel of Durham;
• our role in sponsoring the one-person musical Balancing Act, featuring Greensboro entertainer Wambui Bahati, which has now been presented in several states: Wambui was one of three entertainers featured at the San Diego conference; and
• our ongoing advocacy efforts, strengthened this year by the decision to split off the advocacy and media relations functions into a separate Director of Government Relations position.

There were a lot of proud North Carolinians in San Diego to see the presentation, and to benefit from the many other activities of the national conference. A rich program over four days included an inspiring presentation by three consumers whose own stories illuminated the conference theme of "Turning Promise into Practice: Recovering from Mental Illness." There were research updates, "Ask the Doctor" sessions, four major symposia on critical NAMI issues, and a wide variety of workshops, media displays and special courses, capped by a plenary on "stigma-busting in the entertainment industry," and a Mexican Fiesta. Lots of information; lots of inspiration!

Audio tapes of the major sessions will be available from the NAMI North Carolina office; call the staff for a list of available topics. We will loan tapes to affiliates at no charge.

The General Assembly, upholding a pledge to keep the short session short, adjourned on July 13. Here are some of the highlights of their stay in Raleigh…

After the Governor proposed a pitiful Mental Health budget, grassroots pressure caused legislators to make significant changes to address the needs of people with mental health, developmental disabilities, and substance abuse needs. The budget that passed includes over $17 million for adults and children with mental illness and serious emotional disorders.

A bill to establish a legislative oversight committee to guide system reform efforts passed unanimously in both House and Senate. The focus now turns to the appointment of legislators to the oversight committee and the leadership of the committee. Word is that this committee could begin meeting as early as August.

After a great deal of advocacy and bargaining, a bill has been signed into law that reaffirms the authority of rule-making commissions governing mental health, child residential facilities, and adult care homes, to regulate the use of seclusion and restraint, including training requirements. The bill requires the reporting of deaths in facilities that

occurred within seven days of the use of restraint or due to suicide, homicide, accidents, or violence. The Secretary of the Department of Health and Human Services must report annually to the legislature on the level of compliance of each facility, the number of reported deaths and the result of investigations.

This bill has two parts. The first, as the title suggests, deals with the requirement that facilities must report all abuse allegations against health care personnel, whether or not the allegations are substantiated, to the health care personnel registry. This was in response to growing concerns that personnel accused of patient abuse often would quit before an investigation was completed, only to get employment at another facility. The bill also allows the

Department of Health and Human

Services to suspend licenses and levy penalties on facilities that fail to comply with licensing rules.

Children with special needs, including serious emotional disorders, can now quality for health insurance through NC Health Choice without having a waiting period. Previously, families were required to give up health insurance for two months to be considered "uninsured" before they could qualify.

This bill, to require that insurance plans cover mental illness and substance abuse equal to that of other disorders, went nowhere. Assigned to the House Insurance Committee, the bill was never even brought up for discussion. While the bill is dead for now, we will resurrect in during the next session of the General Assembly.

While the Legislature is heading home, the legislative work does not stop and government bureaucrats and commissions will be busy implementing laws just passed. Biggest on the agenda is the MH Reform Legislative Oversight Committee. We also will be watching the rule-making commissions as they respond to the Restraints in Facilities and Health Care Registry Reports bills.

Discussions also are underway regarding whether Developmental Disabilities will become a separate Division in state government. Committees are forming to develop a plan to respond to the U.S. Supreme Court’s Olmstead decision. So stay tuned…

The annual NAMI convention took place this June in San Diego. Part of that program is a President's Council meeting, which occurs a day before the actual meeting begins. It is valuable and exceedingly helpful to exchange ideas and share our common state issues. The one at the top of almost all the lists is the lack of money to do the things that are needed.

Money is needed across the country to prop up declining services in all of our states. Money is needed at NAMI to continue our efforts at the national level. Money is needed at the state and local levels to continue efforts such as Family-to-Family and increase the general public's awareness of the nature of severe mental illnesses through education and advertising. This is seen as part of building a stronger voting bloc so legislators get the message from more and more people.

It is tempting and all too easy to focus solely on the needs and

problems. As the convention progressed, it became quite clear that other states were looking to NAMI North Carolina as a state organization that had managed well, had expanded our membership and had developed some programs and answers for some of the difficulties.

NAMI North Carolina, by just going about our business and doing what needed to be done, had set an example that was recognized by others. That effort culminated when NAMI North Carolina received the award as Outstanding State Organization of the year from NAMI president, Jackie Shannon.

It was given, in part, for the development of The Tool Kit for affiliates, which has been made available to state organizations and affiliates all across the country and which has been enthusiastically received. The award also cited Balancing Act and its presentation in so many of our communities.

When I accepted the honor, I felt compelled to say that though I was the one designated to accept the plaque, the work that earned it had been done by state leaders who preceded me, by excellent staff and by all of our members who have faced the challenges of mental illnesses and who have survived and achieved. Together we have done good work.

With the new school year approaching, it is time for us to schedule our school presentations.

NAMI North Carolina has a well-documented two-hour presentation entitled "Emotional, Behavioral, and Mental Disorders in Children and Adolescents." Topics include warning signs, medications, the needs of families, and classroom interventions.

The presentation was piloted last year to over 300 school professionals. The response was overwhelmingly positive. Attendees greatly appreciated the information and helpful handouts. We also donate a selection of five books that are excellent references for teachers and school nurses.

I will soon be getting information out to the schools that have shown an interest in scheduling a presentation. Please call if you would like me to contact a school or group of school nurses about scheduling a time for our presentation.

This presentation is made possible by NAMI North Carolina’s contract with the Division of Mental Health, Child and Family Services Section.

Keith Renshaw, a graduate student in clinical psychology at UNC Chapel Hill, is working on his dissertation, focusing on the effect that an individual’s depression can have on family members.

He hopes his research can help form the basis for designing treatments for family members of individuals with depression.

Keith invites families who have a relative with depression to participate in his study. Contact Keith by calling (919) 962-2507, or writing to him at UNC, CB #3270, Davie Hall, Chapel Hill, NC 27599-3270.

Board Sets Goals at Retreat

NAMI North Carolina’s new Board held a most productive retreat June 9-10 at Brown Summit. We got acquainted with one another (8 of our 20 Board members are new this year), reviewed the great accomplishments of the past year, and developed goals for 2000-01:

• to work with the State Auditor, new Governor, Legislative Oversight Committee and next year’s General Assembly towards system reform which will genuinely benefit persons with serious mental illnesses and their families;

• to double the size of our Young Families program, to four sites offering ongoing support to the parents of school-aged children, and to as many conferences, systems and individual schools as needed to offer training to 800 school personnel;

• to continue to expand Family-to-Family education and support;

• to continue to offer our outstanding education programs, including Clippings, our Spring Conference and Fall Institute, the Helpline, our web site, and publications;

• to develop new local affiliates and help sustain and improve existing ones;

• to raise $300,000 in contributions in this year, working towards a long-term goal of 10,000 members and an annual budget of $1,500,000; and

• to pilot-test a "Treatment Works" awareness campaign, through TV and radio spots, newspaper and magazine stories, and speakers’ bureaus, in order to reach the thousands of families who need our services and who can help us achieve our goals.

We’re looking forward to an exciting year of great accomplishments!

In mid-June we said good-bye to Norma Whitfield, who had been on the NAMI North Carolina staff for just over 10 years. Norma resigned to become the church secretary for Pullen Memorial Baptist Church in Raleigh.

Her tenure with NAMI was "eventful," to say the least: it overlapped four executive directors, a stretch with no executive director, a tripling of the annual budget, three office re-locations, many tense times and many happy times.

NAMI North Carolina is forever grateful to Norma for her long commitment and expertise that have helped NAMI North Carolina grow.

Norma remains a member of NAMI North Carolina, a friend, and a supporter of our cause.

Early in July we welcomed Helen Coleman. Helen brings a B.S. degree in Business Administration (with a minor in Accounting), plus 20 years of office management/accounting experience in Illinois and–since 1995–in North Carolina.

She is proficient with the QuickBooks accounting system we use, and works best in small offices where everyone has to do lots of things: a former boss says that she "defined the word ‘multi-tasking’ for us." Helen brings enthusiasm and optimism as well as great credentials, and we feel fortunate to have found her.

You originally presented a preview of the course to the staff of the mental health center, including me, and asked that we recommend it to our patients. I took the course for several reasons. 1) I have a mentally ill parent and wanted to learn how to help her more effectively. 2) I wanted to make sure that what you are teaching is accurate. In essence, I wanted to determine whether this was a course that I felt would be useful for my patients' families. 3) I wanted to learn techniques to better relate with my patients' families who, from my perspective, are a huge factor in determining how my patients do from day-to-day, especially those clients that live with their families.

Your course turned out to be a treasure that I fervently wish had been presented to me during my training instead of ten years into my practice. But perhaps it has taken 10 years of practice to realize how important this course is. You see, during my psychiatric training I learned about diagnoses, medicines, side effects, blood tests, how to interpret research, and what other forms of therapy to prescribe to help the patient. In order to do well during medical school and psychiatric training, you have to be logical, read the literature and in general, demonstrate that you know a lot.

In the ten years that I worked with the severely and persistently mentally ill, it became clear that I could be a walking psychiatry text book, up to date on the latest in every type of psychiatric treatment, respected by my fellow psychiatrists. The patients and their families do expect me to be well trained in the science of psychiatry. However, they are much more interested in how well I understand, empathize and communicate with them, their particular problems, how the illness and the medications are affecting them. Very, very little about that was taught during my training.

The Family-to-Family course was the first course that spelled out for me what it was like to be a patient with a severe mental illness, and what it was like to be a family member. It was the first course that literally demonstrated for me what it was like to try to listen to someone while having auditory hallucinations. It was the first course that taught me concise, empathetic communication with a patient. It was very useful in helping me deal with my mentally ill mother. In fact, when I used some of the empathetic listening skills taught in the class with my mother, her joy and relief that someone actually understood how she felt was so overwhelming that it almost reduced me to tears.

The course was so accurate and helpful that I recommend it highly to any of my patients' family members who showed up in my office.

Finally, I gained incredible respect for the family members of severely mentally ill people. I listened to their problems, their fears, and concerns. I learned how I could be more helpful to them and their family member who has a mental illness in my role as a psychiatrist. I don't know how the patients and their family members do it. The media, which regularly holds up sports heroes and other celebrities as courageous, needs to spend some time in a Family-to-Family course to get a real picture of courage.

September 30

NAMI North Carolina Fall Institute, Blowing Rock, NC

October 17, 18

Housing Forum 2000, North Carolina Housing Finance Agency, Chart a Course for the New Century, Sheraton Imperial Hotel, Research Triangle Park. Call (919) 877-5608 for details.