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Published by NAMI North Carolina
North Carolina’s Voice on Mental Illness Capital Ideas... The Legislature convened for its long session on January 27th. There are a number of issues that NAMI North Carolina will work on. Inevitably, issues will arise that we will have to respond to during the session, but the following are the major issues we anticipate: Insurance Parity- Mental Health/Substance Abuse Parity legislation will be introduced early in the session. Meetings are now taking place to craft strategy and language and to gather support from legislators. Coalition 2001, comprised of nearly 50 mental health, develop-mental disability,
and substance abuse organizations, is taking a very different approach to the budget
process this year. The state psychiatric hospital and area program study will look at what is needed to implement the hospital study completed during the last session as well as to assess the community mental health service system and make recommen-dations. An interim report will be given to the legislature during the session. We will need to monitor this closely. Insurance- The insurance commissioner has indicated he will submit legislation dealing with some concerns that have been raised about managed care. These include making a second level grievance review completely independent from the plan and to require HMO's to undergo quality review by an external organization. Conditional Release- Legislation to make changes in the commitment law to expand provisions for "conditional release" will likely be introduced. These provisions will be for individuals with a history or potential of violence and medication noncompliance. Although the language still is being crafted, the new provisions likely will provide for more services and monitoring of treatment com-pliance as well as easier hospital readmission if treatment compliance is not met.
Dr. H. David Bruton At Spring Conference The 1999 Spring Conference will be held at the Holiday Inn, Research Triangle Park, on Friday and Saturday, April 9-10. The key-note speaker on Friday will be H. David Bruton, M.D., Secretary of the North Carolina Department of Health & Human Services. Dr. Bruton will share his vision on the future of the public mental health system in North Carolina. A second plenary will feature Jean Elder, Ph.D., of the Council on Accredi--tation, who will explain the new area pro-gram accreditation process and how families can be involved. Satur-day's keynote address will be delivered by Martha Manning of Arlington, VA. Ms. Manning, a psychologist who has depression, has written the book Under-currents. Informative workshops include cultural com-petency, Dr. Alice Noell of the Wake County Human Services Depart--ment; alter-native medicine, Mary O'Brien, Ph.D., of Coastal AHEC; future plan-ning options, Noelle Gay Schofield of Life Plan Trust; caring for care-givers, Anna Scheyett, CCSW; housing, Julia Bick, Division of MH/DD/SAS; the Schizophrenia Treat-ment and Evaluation Program, Diana Perkins, M.D., UNC Dept. of Psychiatry; MI/SA initiatives, Don Herring, Crisis Services Section, Div. of MH/DD/SAS; and veterans affairs, Richard Hills of Greenville, SC. Mark your calendars now for a week-end of education, informa-tion and fellowship. Conference brochures containing the agenda and registration information will be disseminated in March.
From the President... Make a wish! What would you wish for your loved one with mental illness? ...An ACT (Assertive Treatment) team to provide wrap-around individualized services? ...A single occupancy apartment with case management services as needed? ...An active, attractive clubhouse program? ...A part-time job with a helpful job coach for back-up support? ...A caring, assertive 24-hour crisis team that comes to help whenever needed? ...Parity for mental illness on your private insurance? ...A change in community attitudes to reduce stigma? Does that wish sound like an impossible dream for your community? But that dream is what NAMI is all about-that is our reason for being. To make the dream come true. And some key people in the right spot at the crucial moment can MAKE A DIFFERENCE and actually help shape mental health services. How to make significant input that makes a real impact can be learned. We may not all become as effective advocates as Beth Melcher, our Executive Director, who was acclaimed at the fall conference as "the voice of reason and good sense figuring out a way to move forward on a difficult issue or project rather than just fighting or stagnating." Yet we can improve our advocacy skills through skill training. Members of NAMI-NC are being offered this opportunity through the Leadership Academy at the end of February. NAMI-West Virginia and the West Virginia Consumers Organization have developed a nationally recognized training program designed to increase and improve the effectiveness of advocacy at the grassroots level. Participants learn to:
Reports from persons who have taken this course are enthusiastic. One participant wrote, "I've gone from being very angry to being very motivated...I can stop spinning my wheels and start turning wheels." This course will be offered free of charge to 25 participants on February 26 - 28 in the Research Triangle Park. The only "cost" is a commitment on the part of the participant to MAKE A DIFFERENCE. Anyone who is interested should contact Beth Melcher at the state office. Every affiliate needs at least one person trained in these skills if they are serious about bringing about change in the mental health system.
-Shirley Strobel
Carolina Alternatives In 1994 North Carolina initiated a pilot Medicaid waiver program for children in 10 area programs across the state. Named Carolina Alternatives, the program sought to increase the development of community services for children and enhance access to those services. On both of these fronts Carolina Alternatives was very successful and influenced program and management development throughout the mental health system. Carolina Alternatives, however, increasingly became a victim of shifting fiscal policy at both the state and federal levels. Ongoing disagreements over "cost effectiveness" and "rate finding" have led to substantial reductions in funding. In January 1999 the federal Health Care Finance Agency (HCFA) informed the state that it would not approve an extension of the waiver program unless the issues could be resolved. Faced with another potential 14% reduction in rates to show "cost effectiveness," the state and participating area programs have concluded they must end the Carolina Alternative program in the 10 pilot sites.
What does this mean? In the 10 pilot sites the program will end at the end of February. Hardest hit will be families that have come to depend on the alternative services provided through Carolina Alternatives. While services will still be provided on a fee for service basis, the type of services offered will be substantially different and likely reduced. The state now faces the task of how to continue the gains made under Carolina Alternatives but within fiscal policy now in effect. Dr. John Baggett, Director of the Division of Mental Health, has established a "design team" to look at this issue. NAMI NC executive director Beth Melcher will serve on this committee. The work of the design team will offer a tremendous opportunity to create a new way of offer services to individuals with mental health and substance abuse needs. More will be reported on this effort in subsequent Clippings.
Education Course Leads NAMI Burlington to Find Larger Meeting Space The recent phenomenal success of the NAMI Burlington affiliate caught the attention of the state office and spurred a one-on-one interview with the Family-to-Family education teachers, John and Lois Tekely. The following is a personal account given by Lois Tekely.
Question: What inspired NAMI Burlington to incorporate the Family-to-Family Education course in the affiliate? Response: "Our support group was down to 7 members and we were desperately trying to spark some interest within the community...to no avail. Then we heard about the Family-to-Family Education course. Our group met in our home and the decision was made to bring this program to the Burlington area. I truly believe it was divine guidance. John and I took the training. What a dynamic and enlightening experience! We came home from Raleigh feeling both enlightened and inspired. With the help of a member of our support group, we started the wheels in motion!" Just weeks before the course was scheduled to begin, only a few people had enrolled. Panic-stricken, John Tekely called the state office for possible solutions. The staff reviewed with him all the steps taken to publicize the course. The teachers hadn't missed a beat and had done everything the manual instructed them to do. State office staff offered support and reassured him that "they will come." Weeks later, the state office received the following phone call from John and Lois. "We started our first night with 16 people and 4 came as drop ins!" What a nice problem to have. State office staff attended the graduation ceremony for 19 people on November 19th! It was very obvious this group had bonded. Class members were somewhat sadly bidding their goodbyes to one another. When it was explained to them they could become a part of this national grassroots organization and continue the education, support and advocacy they experienced throughout the course, each person decided to become a member. 100% of the class participants joined this local affiliate.
Question: What impact did teaching the class have on you? Response: This was truly a wonderful experience. Each class was filled with open communi-cation by the participants, love and most of all hunger for education. They were truly a wonderful group. Each one joined our support group, and as a result we have a new meeting room at Alamance Regional Medical Center. Now we are looking forward to reorganizing our group. We have 19 people to get on NAMI's bandwagon and we intend to keep them there!" As the Family-to-Family Program empowers family members, it tends to strengthen affiliates. New affiliates are springing up in areas where NAMI has been non-existent and it is primarily because of this program. We're giving family members what they have wanted and needed for decades. Classes for 1999 are filling up quickly. If you would like to know if a program is being offered near you, call Matisha Brown at the state office, (800) 451-9682 or (919) 788-0801. Also, members who are interested in learning more about teaching the Family-to-Family education classes or facilitating the support group, are encouraged to call Matisha for more information.
Welcome NAMI Randolph! On January 9, two dozen Randolph County residents met to create a new affiliate of NAMI North Carolina, called NAMI Randolph. There is a story behind the creation of NAMI Randolph. Becky Faucette and Elaine Purpel, both teachers of Family-to-Family course from NAMI Guilford, took the course to Asheboro. Matisha Brown, NAMI North Carolina's Family-to-Family Coordinator, went to the final class and invited class participants to join and create a new affiliate. Most of them did on the spot. Within weeks, the fledgling affiliate set up a meeting with Beth Greb, NAMI North Carolina's Membership Development Coordinator and her husband, Rich, to educate themselves on how to form an affiliate. At the end of the meeting, officers were elected and the affiliate was off and running. NAMI Guilford members, Frank and Pat Cleary, have agreed to run the Randolph support group until new facilitators can be trained. New President Becky Faucette is lining up members to take every possible training provided by NAMI North Carolina. Her goal is to have members trained in Family-to-Family, both teachers and support facilitators; Leadership Academy; Affiliate Leadership Training; and the Science and Treatment Program. Congratulations and welcome to NAMI Randolph!
Food Lion Project By now, all affiliates should have received information and reply forms for the Food Lion Project. Food Lion Community Way Days will be held exclusively for NAMI North Carolina on April 26, 27 and 28, 1999. If you or your affiliate would like to participate, contact Zanna Cipriani at (919) 788-0801 by February 12. We need all the shoppers we can get. NAMI North Carolina affiliates get a percentage of the grocery bills from the area(s) in which they coordinate the project.
Studies Suggest That Ampakines Improve Cognition Cortex Pharmaceuticals has received a Notice of Allowance from the U.S. Patent and Trademark Office for additional claims that cover the use of AMPA receptor modulating compounds, regardless of structure, to improve memory and cognition. The new patent covers Cortex's compounds-as well as those made by others-for treating memory and cognition. "As a result of our pioneering work," stated Vincent F. Simmon, Ph.D., President and CEO of Cortex, "there are several companies in the United States and abroad that are now attempting to develop compounds that are similar to Cortex's Ampakines for treating Alzheimer's disease, schizophrenia, and other diseases and disorders that affect memory and cognition." Published studies demonstrate that Ampakines can cause a statistically significant increase in the memory of elderly animals and humans. Preliminary results from an ongoing study in patients with schizophrenia also suggest that Ampakines can improve memory and cognition. Health industry estimates indicate that more than four million Americans are victims of Alzheimer's disease, with that number expected to double over the next 20 years as the U.S. population ages. Individuals with schizophrenia represent approximately 1% of the population. At any given time, it is estimated that inpatients with schizophrenia account for 25% of all hospital bed utilization and represent in excess of $10 million in direct costs. - taken from NAMI WV News
Establishing More Grassroots... Only one in three of the 100 counties in North Carolina have NAMI affiliates. One of these counties may be nearby, but may not be close enough for you to attend affiliate meetings. In four counties of the state where there is not yet an active NAMI affiliate, volun-teers have agreed to be local contacts until there are enough people to form an affiliate. Local contacts are now available in Ashe County at (336) 982-3488; Catawba County at (828) 758-9494; Onslow County at (910) 328-3693; and Johnston County at (919) 284-9878. A new affiliate may be just a phone call away. If there is no affiliate in your county, or you live in a location other than those listed above, and you wish to be a contact or help start a new affiliate, please call Beth Greb, Mem-ber-ship Development Coordinator at (800) 451-9682.
Eleven NAMI North Carolina Affiliates Awarded Grants On February 1, 1999, NAMI North Carolina was proud to award a total of $17,510 to eleven affiliates in the form of grants. Five affiliates were awarded Capacity Building Grants, and six were awarded Outreach Grants. Congratulations to the first recipients of the NAMI North Carolina Affiliate Grants as listed below: Capacity Building Grants- NAMI Cabarrus County, for telephone contact expense and postage; NAMI Durham, 501(c)(3) status, bulk mail and brochures; NAMI Foothills, incorporation and 501 (c)(3)status; NAMI Four Seasons, telephone contact expenses, Yellow Pages and newspaper ads; NAMI Rockingham County, post office box, telephone expenses, brochures, postage.
Outreach Grants- NAMI Cumberland County, for police Crisis Intervention Training (CIT) program; NAMI High Country for incorporation process and transportation for consumers; NAMI Moore County for police CIT program and additional training statewide; NAMI Union County for religious outreach training; NAMI Wake County for Balancing Act; and NAMI Western Carolina for Balancing Act.
Summary Of Results: According to a publication by Consumer Health Sciences, LLC, 346 Wall Street, Princeton, NJ 08540, an extensive research project begun in 1997 to assess characteristics, attitudes, and behaviors of persons with schizophrenia has produced the following information:
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