• News from Executive Director
• Heroes in the Fight Award
• Letter from the President
• Advocacy: NAMI Walks
• Advocacy: NAMI Walks
• Education: Medicare Part D
• CATIE Study Results
• Support: Consumer Council News
• NAMI NC Recognition
• Upcoming Events

"I hope that you live in interesting times." I can not keep straight if that Chinese saying is a curse or a blessing. Either way, curse or blessing, it is true: interesting times are upon NAMI North Carolina, and indeed the entire mental health community. Mental Health Reform continues to provide us with challenges and opportunities. However, as a major organization with the mission of advocacy, education, and support, NAMI is rising to these challenges and opportunities.

Since taking the NAMI NC leadership role in June 2005, I have learned a great deal about NAMI programs and the many ways in which they benefit communities across the state. I have also learned to appreciate the passion and vision of the Board, and the great strength of the membership. In the past few months, we have successfully completed NAMIWalks and two well received Fall Institutes. We also have initiated the yearly membership campaign and the Annual Fund drive. As an organization, we have offered Family-to-Family classes and prepared another group of teachers across the state. We have provided information about serious emotional disturbance facing children and young families. Our Helpline has answered hundreds of questions and made lifesaving referrals. However, there is still a great deal to do. We are implementing our new In Our Own Voice program and continue to seek funding to support new programs such as Crisis Intervention Training.

These interesting times challenge us in many ways. Through Reform, the number of available state psychiatric hospital beds has decreased, community programs have merged, and the billing process has changed. However, those with mental illness have seen no significant impact in the areas of employment, housing, transportation, long term care, or the criminal justice system. We must reduce the stigma associated with mental illness and obtain parity. The number of uninsured in NC is still rising. Taking a family member to the emergency room does not necessarily mean that the crisis is over. NAMI NC and the Affiliates are advocating for serious change at the state and local level.

The times are certainly interesting and filled with the opportunity to make great strides, to help fix a system that clearly is broken. NAMI NC will continue to make gains for people with mental illness, to bring forward effective programs, to be there when there is a need for information. Blessing or curse, the times are what they are. With your effort and support, and your involvement at the local, state, and national level, we will continue to push for the goals we all share as members of NAMI North Carolina.

Benjamin Staples, MS, MBA

On Monday, December 19, 2005, the Coalition for Persons Disabled by Mental Illness (CPDMI) and several other local mental health organizations recognized six individuals, including our own Beth Hardy, Ph.D., as Heroes in the Fightsm for their dedication, care and support of individuals with severe and persistent mental illness (SPMI) and their families. Heroes in the Fightsm is a recognition partnership program, established by Eli Lilly and Company, to celebrate dignity, courage, hope, and recovery in the ongoing treatment of persons with SPMI by recognizing "heroes." These heroes provide care and support for individuals with SPMI and their families. Professionals, advocates and volunteers who best exemplify ongoing care and dedication were nominated by the local mental health community. Congratulations to Beth for this high honor!

• Enhance visibility of NAMI NC across the state
• Review and expand existing programs and build new ones
• Strengthen partnerships with affiliates to expand membership and build strategic networks
• Strengthen NAMI NC’s advocacy efforts, including enhanced involvement in State Reform
• Ensure financial capacity to support the goals and objectives of the strategic plan

To NAMI North Carolina Members and Friends:

Issues facing citizens of North Carolina with brain disorders in today’s mental health landscape are increasingly complex and severe. Budget shortfalls and broken promises have become hallmarks of failing efforts to reform the system of mental health services in our state. In 2001, policy makers recognized that the mental health system was broken and under funded. Family members and people with mental illness had faith in state leaders who promised adequate and appropriate care by redirecting funds more efficiently. Savings achieved through Reform (now called Transformation) were to be kept in the system and used to improve services where needed. NAMI NC endorsed the reform plan based on those promises. We realized that change would be difficult, but were hopeful that with good will and cooperation, additional improved services would become available. Unfortunately that has not yet been the case. While there are pockets of progress, with perhaps a success story here and there, the general consensus among advocates is that Reform, as envisioned in 2001, has failed us.

For any bright spot on the horizon to emerge, the recently renewed efforts of our elected representatives to address health care issues faced by people with brain disorders must continue. They must be diligent about the critical need to improve the safety and quality of mental health services in North Carolina. Recent initiatives of the Legislative Oversight Committee and other legislative subcommittees are encouraging, but legislators need the benefit of information from their constituents (that’s us, folks) about the status of the services in our communities. Other local and state leaders should hear from us as well. We need to broaden the base of the dialog to educate and inform more community groups, including civic clubs, chambers of commerce, business leaders, county commissioners, and others who have been only marginally involved in mental health issues thus far. Access to adequate mental health services is a community issue that many communities are not fully addressing. We have a big task ahead of us, but one that is critical to the development of enough quality services for persons with mental illness.

Whether Reform or Transformation, we look to Governor Easley for leadership in recognizing that the system is still broken. We look to him to commit resources to see that it is fixed. We look to our state legislators and policy makers to carry forward their renewed interest in mental health reform solutions. We look to our state mental health authorities to stay focused on the original tenets of reform as proposed in 2001. We look to our community leaders to recognize the critical need to build community-based services so that each person with mental illness has access to appropriate, affordable care, in the right amount, at the right time, and in the least restrictive environment.

And we look to ourselves to make sure our voice is heard. There has never been a more critical time for NAMI members and friends to define our message and deliver it to our legislators, our service providers, our local mental health authorities, and our communities. Never has there been a more critical time to educate the public about the status of mental health reform in our state. I urge each of you to involve yourself in your community’s effort to address mental health issues. Speak up as individuals and get the message to the right people. Call your legislators and tell them how reform is working, or not working. Put letters to the editor in your local newspapers. Do everything you know how to do to educate those who can make a difference in the quality of services for citizens of our state who live with mental illness.

Kudos to those of you who are active in your community and/or in statewide advocacy efforts. And a special thanks to those of you who are making a new or renewed commitment to devoting more energy to the NAMI mission at this most critical time.

Beth Garriss Hardy, Ph.D.
President
NAMI NC Board of Directors

NAMIWalks in the Triad, NAMI North Carolina’s big walkathon event to raise awareness about mental illness and raise funds for NAMI NC and NAMI affiliates, was held on October 8, 2005 at Triad Regional Park. The clouds and light rain did not discourage the crowd of 250 people who were on hand to walk in celebration of those they honor for their struggle with mental illness. The day became a big NAMI party with music, food, new and old friends, families getting together, and community involvement. BeautifulTriad Regional Park was the perfect venue for NAMIWalks. Those attending had a chance to see our NAMI NC 20th Anniversary Quilt and pick up information about Family-to-Family, Young Families, In Our Own Voice, the NAMI NC Helpline, and membership in NAMI. We also had some team members who were rockers instead of walkers! And…..thanks to the efforts of 39 Walk Teams, generous sponsors, and many individual donors, we raised $69,000. That revenue will be shared by NAMI, NAMI NC, and Affiliates around the state.

The 15 NAMI Affiliates that participated in the Walk will use the money to support projects in their communities, increase their advocacy, and better serve their members. We are pleased that they joined with NAMI North Carolina in this opportunity to raise awareness about mental illness and share in the benefits of the Walk.

NAMI’s national walkathon program, NAMIWalks for the Mind of America, is in its third year with 50 Walk sites around the country in 2005. Over half of our NAMIWalks in the Triad donors and sponsors supported NAMI for the first time, which means that we reached a large number of new people with information about NAMI and mental illness. Our sponsors gave a total of $20,250 in cash and $1875 in food and advertising. There were 1008 individual donors representing 31 states with contributions ranging from $1 in cash to individuals who gave $500.

This project could not have been accomplished without the involvement of a huge group of people. We are grateful for the time and effort of all the volunteers who chose to be a part of NAMIWalks. On behalf of the NAMI North Carolina, thank you for a job well done!

Benjamin Staples, Executive Director, NAMI NC
Carol Matthieu, Walk Manager, NAMIWalks

Presenting Sponsor - $10,000

NAMI Wake County President, Ann Akland, had an idea to raise awareness and to help NAMI NC and affiliates across the State raise funds. The idea? A symbolic art event depicting Van Gogh’s painting, The Irises, which was painted while he was mentally ill and institutionalized. The painting, a symbol of courage and hope adopted by NAMI nationally was replicated by erecting more than 1,000 45" high polyester irises, daisies, and tulips across from the NC Legislature the last week in April to kick off the NAMI NC Annual Convention. Our signs with the message, "Mental illnesses are biological like diabetes, cancer, and other diseases," told people why we wanted their attention. For those interested, informational tubes contained brochures.

Sponsors from Wake County and across the state honored people with mental illness, advocates, and mental health professionals by sending donations. Tags were attached to the flowers with their names during a ceremony where NAMI NC President Beth Hardy, NAMI Wake President, Ann Akland, Rep. Deborah Ross, and Bob Sorrels, Deputy Director Wake County Human Services spoke. The event received widespread attention from the Legislature, community and the media. The Raleigh event was so successful that the show went on the road.

The Celebration of Courage raised approximately $14,860. Thanks to the wonderful affiliate leaders and volunteers who made this event such a success across the state! Plans are now being made to continue Celebration of Courage events for 2006. For more information on how to bring the Celebration of Courage to your community, visit the NAMI NC website at www.naminc.org. Thank you Ann and Gerry for all the work you do on these events!

As of January 1, 2006, the Medicare program has changed to offer a prescription medication benefit. If you have Medicare you can choose one of several insurance plans to help pay for medications you take. The difference between the plans is that they each cover a different list of medications (also called a "formulary"). If you have both Medicare and Medicaid insurance, you will be automatically enrolled into a plan, unless you chose a different one before January 1. Also, if you have both Medicare and Medicaid, starting January 1, 2006, you will receive your prescription drugs through Medicare only, although all other services will still be covered by Medicaid. A monthly premium, co-pay, deductible, and co-insurance may apply, depending on your income and whether you have both Medicare and Medicaid. There is an "extra help" program available for people who need assistance in paying these costs. There are many more details to this new program. The following information will help you find the information you may be seeking:

Things you should know:

• You must fill your prescriptions at a pharmacy in your plan’s network.
• The initial deadline is May 15, 2006. If you do not sign up to a plan by this date, you will have to pay a higher monthly premium for your drug plan when you do enroll.
• Medicare drug plans for people who have both Medicaid and Medicare must cover "all or substantially all" of the medications commonly prescribed to treat mental illness, including antipsychotics, antidepressants, and anticonvulsants.
• You and your doctor may make a request for your plan to cover a medication that the plan does not list on its preferred drug list.
• You can get help with plan enrollment and selection online at www.medicare.gov or through the phone at 1-800-MEDICARE

Things you can do:

• Talk to your doctor or case manager about your medications to find out which drug plan will work best for you and how to enroll in the program.

• Compare different plans in your area (online at http://www.medicare.gov or through the phone at 1-800-MEDICARE)

Other places to seek information:

• The North Carolina Division of Mental Health, Developmental Disabilities, and Substance Abuse Services has a page on its website with information about plans specific to North Carolina, and a link with information for consumers and advocates. See its website at http://www.dhhs.state.nc.us/mhddsas.
• The Social Security Administration has the application you may complete if you would like help with your share of the plan cost. See http://ssa.gov/pubs/10124.html or call 1-800-772-1213 for the application.

In the Fall of 2005, the Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) study results were available to the public. This study, funded by the National Institute of Mental Health and conducted in many sites nationwide, compared the effectiveness of older (also known as first generation) to newer (also known as atypical or second generation) antipsychotic medications used to treat schizophrenia. This study was important because of the higher cost of newer medications, and because the CATIE study was the largest and longest independent trial ever conducted. The medications compared to each other were olanzapine (Zyprexa), quetiapine (Seroquel), risperidone (Risperdal), ziprasidone (Geodon), and perphenazine (Trilafon).

The most important results were that the older and newer medications were not significantly different in effectiveness, but many people stopped taking the medications because of the side effects or because the medications failed to control symptoms, so the results are hard to interpret. One of the newer medications, olanzapine, was slightly better than the other medications in terms of reducing symptoms and hospitalizations, but also was associated with greater weight gain as a side-effect.

The principal investigator, Jeffrey Lieberman, M.D. (formerly from UNC-Chapel Hill), stated that the way that people respond to medications is still not well understood, and that this study is not the final word on the subject. Many factors, including how someone reacts to a particular medication, should be taken into account when determining which drug to use. The CATIE study is a very complex study with complex findings and raises more questions. You can read more on the study at the NAMI website or read the final report in the New England Journal of Medicine (September 22, 2005) (Volume 353: 1209-1223).

We Need You

Consumers everywhere, listen up. The Consumer Council needs to hear from you. One of the purposes of the NAMI NC Consumer Council (CC) is to advise the NAMI NC Board of Directors about consumer’s perspectives on issues affecting us, our welfare, and our recovery. Another purpose of the CC is to empower and educate mental health consumers, to address their issues around care, treatment, services, mutual support and consumer rights. We also carry a responsibility to disseminate information and provide skills training for consumers attending the Annual NAMI NC Spring Conference.

Each affiliate is invited to have one consumer appointed and identified to the CC as a voting member of the CC 30 days prior to the Spring Conference and also to appoint an alternate consumer council representative as well. All consumers who are members of NAMI in good standing can and should be registered members of the Consumer Council. If you are not currently a member of NAMI NC, ask your affiliate Officers about joining and then register for the Consumer Council.

Remember that it is our voice, the voice of the consumer that can and does make a difference in treatment, medications, services, and recovery. The Consumer Council is one more tool for you to use to enhance the issues important to you. You may find more information on the NAMI NC website. The web address is: http://www.naminc.org then click on Consumer (or click this link: http://www.naminc.org/consumer.htm).

Recovery—Out Of The Box
By Ted Thomas

Take out a plain white piece of copy paper. In the middle, with regular size writing, write down the word or words of your diagnoses. Don’t worry about spelling. Put it all down, including any personality disorders, physical ailments, all of it. Remember though, regular size writing. Nothing big. When you are done writing, draw a box tightly around these words. Hold the paper away from you at arms length. What do you see? Some of you I’m sure are thinking, "Gosh, what a mess I am." "I really am sick aren’t I?"

When you are looking at the paper, you are only focusing on what is inside the box and not what your potential is outside the box. You see, you are not defined by what exists inside the box. Your real life, who you are, what you are made of, what you are capable of is truly represented outside the box.

Begin now to write outside the box, words that describe you and your abilities, your good character traits, your goals and desires, be creative in your writing.

For recovery to occur, you have to want it, see it, and feel it. Want not to be in the box. See yourself out of the box. And feel like you’re out of the box. And you can be.

Be On The Lookout

2006 will be synonymous with the rollout of NAMI NC’s In Our Own Voice program. Plans are in the making for training of a handful of presenters from various locations throughout the state.

NAMI NC received a grant from the Department of Justice that is allowing us to start small and build this outstanding,

stigma-busting, community-strengthening program and do educational outreach in a way not done before in this region.

The western part of North Carolina has worked In Our Own Voice many times over already and with great reception, changed minds and perceptions of just what mental illness is about. We applaud them for their efforts.

In Our Own Voice is an excellent tool to take into the community as a presentation of recovery by presenting the real face of mental illness ‘in person’, but also by means of a video having clips of a variety of consumers telling parts of their story too.

It is very moving and stirring for the audience to become part of the process that the mental illness has taken you through as you describe elements of your journey.

You talk them through those Dark Days; the Acceptance; Treatment; Coping Skills; your Successes; and finally your Hopes and Dreams. Fear not, you are not alone. Two or three go together to a scheduled presentation.

The audiences vary widely, from mental health professionals, to law enforcement training classes, or civic groups, maybe consumer day programs or drop-in centers, could be a church function, or even a hospital, mental or medical, or college and university campus, perhaps a high school or middle school.

Come to think of it…we will present almost anywhere; anywhere we can make a difference.

You can make a difference right now though. Locate some of the past consumers of your affiliate and find out how they are doing. Talk to them in person or by phone and ask them to come back to join you at your meetings. Be thinking of new consumers that you might invite or how you could get the word out more about your NAMI affiliate support group.

Your outreach could mean a higher level of recovery for someone out there waiting to hear from you or hear about your group. So reach out and make a difference.

Contact Consumer Council at:

NAMI NC CC, 309 W. Millbrook Ste 121, Raleigh, NC 27609,
Email mail@naminc.org
CC Chair: Kent Earnhardt, EarnhardtKent@aol.com
CC Vice Chair: Ted Thomas, tkcc5@carolina.rr.com
CC Vice Chair: Carolyn Hanseman, Carolyn62142@yahoo.com

To respect and protect the privacy of our contributors and supporters, this online version of our newsletter does not include any names or other personal information.

The Summer 2005 issue of Clippings listed the many individuals and organizations who contributed to NAMI North Carolina during the fiscal year from July 2004 through June 2005. Unfortunately, several names were left out. I personally apologize for the error and any confusion or concern that any donor might have experienced as a result of the error. As a correction, please find a listing of the names that were left out of the original publication [please refer to the printed version of this newsletter].

Benjamin Staples, MS, MBA

• Please note that the NAMI NC Spring Conference is scheduled for April 27-29, 2006 at the North Raleigh Hilton. As always, there will be interesting speakers on topics of interest to professionals, members, and the community. This meeting is also the Annual Meeting of the NAMI North Carolina membership. There will be specific events related to the organization held at that time. Please mark your calendar and look for registration information on http://www.naminc.org.
  
  
• Upcoming meetings of the Mental Health, Developmental Disabilities and Substance Abuse, Joint Legislative Oversight Committee are scheduled for January 25, February 16, March 22, and April 12 of 2006. Meetings are held in Room 544 of the Legislative Office Building in Raleigh at 9:00a.m. If you would like to listen to the meetings through your computer, go to http://www.ncga.state.nc.us/.
  
  
• The 2006 NAMI Convention will be held Wednesday, June 28 - Sunday, July 2 at the Washington Hilton Hotel. You can see the schedule of meetings and register for the convention at the NAMI website, http://www.nami.org.
  
  
• The Governor’s Advisory Council for Persons with Disabilities will host a Disability Rights Conference on April 21-22, 2006 at the Hilton University Place in Charlotte, North Carolina. Look for more information to be available at http://www.gacpd.com.