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Published by NAMI North Carolina
North Carolina’s Voice on Mental Illness
Research Triangle Institute Grant Research Triangle Institute Issues Generous Grant to NAMI North Carolina On December 16, John Hajdin and Dana R. Greenwood, of the Research Triangle Institute, presented a $5,000 check to NAMI North Carolina Board Members Tom Hadley and Moira Pearson. RTI International has implemented a new corporate contributions program to support their mission to improve the human condition through helping the local communities where they operate. In RTI’s corporate contributions program, employees nominate organizations that meet a set of established criteria. The three main criteria are: the organization must be a 501(c)(3); it must support delivery of services to people in need or other causes consistent with RTI’s mission; and it must serve people in communities where RTI has an office or subsidiary. Only employee-sponsored organizations are eligible. Two employees of RTI nominated NAMI North Carolina. Amy Shende said in her nomination, “NAMI is dedicated to the eradication of mental illnesses and to the improvement of the quality of life of all whose lives are affected by these diseases.” Dana Greenwood, pictured above, said in her nomination, that “I have used their (NAMI North Carolina’s) services and found them to be a lifesaver. I have recommended them repeatedly as a reliable source of information to other individuals coping with problems associated with having a mentally ill family member. In these days when access to professional services are very restricted and much of the care of the mentally ill rests on family members, providing support to consumers and their families is especially essential.” Dana’s husband is a neurologist and although they are highly educated about mental illness, the Family-to-Family Education Course offered them the opportunity to meet others who are in the same situation and to learn coping skills. Dana expressed her empathy for those with less education and without Family-to-Family when they are faced with mental illness in their lives. DATES TO REMEMBER
NAMI NC Spring
Conference -________________________________________________________________________________________________________ Family-to-Family Spring Classes, 2004
By Ken Farrington, President, NAMI North Carolina As we begin a new year, it’s useful to reflect back on events that have transpired in the mental health arena in North Carolina over 2003. Early on, our people realized that NAMI North Carolina’s collaborative lawsuit to enforce the recently passed law regarding restraint and seclusion was no longer needed! Across the state, responsible parties have begun to enforce the new law. This marked change is now helping to save lives and provide dignity through more humane treatment of our friends and family who have debilitating mental illnesses. NAMI North Carolina members enjoyed and benefited from one of our most successful and best attended Spring Conferences ever. The “In Our Own Voice” consumer program drew a great crowd. The eminent Dr. E. Fuller Torrey brought hope and excitement regarding recent developments in mental health research. I’m still digesting all the information from those two days! Sadly one month later I announced that our Legislative Director, Dr. Beth Melcher, was leaving to take a position directing The Science to Service Project, an effort to bring evidence-based best practices into operation in all public mental health programs in NC. I am comforted to know that Beth is still working very hard, in her new job, to improve the lives of people in NC who have serious and persistent mental illness. She will always be remembered for her dedication and her giving heart to the benefit of so many North Carolinians whom she has never met and to those individuals who will also benefit from her tireless efforts in the future. In August, our relatively new executive director, Kay Flaminio, resigned her position with NAMI North Carolina. Thankfully, after Kay left, dozens of NAMI members came forward to volunteer their services to help fill staffing gaps. We now have volunteers serving on legislative and mental health committees in Raleigh and around the state. We have several volunteers helping in our state office, and our small current staff have really pitched in by volunteering extra hours and rising to the needs of our organization. Your NAMI North Carolina Board of Directors have gone the extra mile, giving many additional hours to keep the work of NAMI North Carolina on track and headed in a solid direction for the future! My heart has been renewed and lifted up by such a wonderful group of people who have responded in this magnificent way and who have gone beyond the call of duty to do what had to be done. I am confident that we will accomplish much in 2004. While the search for a new Executive Director is underway, we will continue to monitor and respond to the Division of Mental Health, Developmental Disabilities and Substance Abuse Services as mental health reform evolves. Our ongoing vigilance in the year ahead will be a number one priority. One new organizational framework that NAMI North Carolina is putting in place is the creation of three NAMI functional regions. We now have Western, Central, and Eastern Regional Divisions divided by population centers. These three areas, consistent with area program designations, will facilitate expanded advocacy efforts and improved communication among neighboring programs. Our goal is to effect some cohesion among affiliates and programs that may feel isolated and to empower each locale with some of the corporate muscle that makes up NAMI North Carolina. This year’s Spring Conference is shaping up to be another notable event. We will be celebrating NAMI North Carolina’s 20th anniversary with a banquet on Friday night, April 23rd in Raleigh. The conference theme is Reform, Responsibility and Recovery: NAMI NC 20 Years and Going Strong. Please make your plans now to attend this year’s Spring Conference! We also have planned NAMI North Carolina’s first ever NAMI Walks to be held in Charlotte Saturday, May 15th. Please look for more information about the walk in this issue of Clippings and learn how you can play a part in it. Wouldn’t it be great if all of us showed up in Charlotte for just one day to say to the public, “We care about what happens to people with mental illness, shouldn’t you?” Lastly, I want to thank each one of you for being a member and for volunteering in your NAMI affiliate. Thank you for your gifts of money, for we could not exist without them. We continue to prove to each other that together we can make a difference! Make Plans Now for the 2004 NAMI North Carolina Spring Conference NAMI North Carolina’s Spring Conference is scheduled for April 23rd and 24th at the North Raleigh Hilton on Old Wake Forest Road. The theme for the conference is Reform, Responsibility and Recovery: NAMI North Carolina 20 Years and Going Strong. Yes! It’s been twenty years and we are going to celebrate our considerable progress in that stretch of time! Charles Curie, Administrator of SAMHSA, U.S. Department of Health and Human Services, is slated to deliver the keynote address on Friday morning. The topic will be the New Freedom Initiative in public administration of mental health services. In particular, Mr. Curie will speak about the progress of implementing the administration’s program and issues that remain to be addressed. Suzanne Vogel-Scibilia, M.D., and Darcy Gruttadara of NAMI National will participate in an afternoon plenary session regarding children’s mental health services. Other invited participants include Rich Visingardi, Director of the NC Division of Mental Health/ Developmental Disabilities and Substance Abuse Services and Michael Allen of the Bazelon Center for Mental Health Law. On Friday night, we will have a banquet to celebrate our 20th year of advocacy and services. Everyone is invited! Details on this event will be featured in the March issue of Clipping. Each year NAMI North Carolina recognizes and honors several people across the state who have made special contributions to our work. Nominations for awards must come from the affiliate. The deadline for awards nominations is February 20, 2004. The Board of Directors of NAMI North Carolina will choose recipients based on their contributions in each category.
Each affiliate president has the list of qualifications required for the awards listed above. Check with your president if you think you have a candidate for one of these honors. ffiliate News Briefs NAMI Durham County - Mental Illness Awareness Week, 2003, NAMI Durham distributed 10,000 fliers to 35 faith congregations. NAMI Randolph County - This group put posters in the libraries in their county. NAMI Coastal Division held an anniversary dinner on October 25th to celebrate their sixteen years of service. The dinner featured some excellent entertainment from NAMI members followed by a restrospective look at their experience and a look forward to future goals. Dr. Eugene Randall, Neuse Center Psychiatrist, spoke about the respect and importance the mental health community places on NAMI. Dr. Georgene Eakes, Eastern Carolina University, gave a humorous yet serious talk about the importance of the work NAMI does in helping people deal with the continuing grief and trauma of mental illness as well as advocacy and education. Charter members were recognized and honored. Special recognition went to Mrs. Ellen Box of the Carteret Community Foundation, who secured grants to continue the Family-to-Family program for NAMI Coastal Division. The evening was a smashing success for the 30 some members and guests who attended. Your affiliate is listed on the bulletin boards at www.naminc.org. In some cases there is a link to the affiliate’s own website. Let us know if your affiliate has a website. Here's some affiliate websites. NAMI
Orange County NAMI
Stanly County http://www.nami-wake.org/ NAMI
Charlotte
Pediatric Bipolar Disorder or Attention Deficit Hyperactivity Disorder? In a recent workshop held in Research Triangle Park,Child Psychologist Hanno Kirk, PhD explained that the Diagnostic and Statistical Manual IV needs to be further updated to distinguish between Bipolar Disorder and ADHD in children. The difference between these two disorders is of special concern, because medications for hyperactivity may aggravate bipolar disorder. Dr. Kirk presented his distinctions between the two disorders.
Some primary symptoms of Pediatric Bipolar:
Overlapping symptoms sometimes seen in Pediatric Bipolar and ADHD:
Young
Families Update It was 2:00 on Monday afternoon, October 6, when I pulled up at Spring Hope Elementary School, part of the Rocky Mount/Nash County Public School System. Ed and Julia Masters had just arrived and were ready to help me unpack my car and set up for a workshop with local schoolteachers. When the three of us entered the auditorium, we were greeted by a small group of youngsters on the stage. It was their music class time so we made ourselves comfortable in the wooden seats and listened. It was a nice break. Who arranged for us to share our anti-stigma message with a group of educators on this lovely afternoon in October? It all started when a determined mom contacted the central office staff person in charge of in-service training. Rocky Mount/Nash was definitely interested in our workshop, “Understanding Serious Emotional Disorders in Children and Adolescents.” The mother then called me and asked me to contact the school system. Ed and Julia were a big help setting up that day. They passed out folders, placed handouts and brochures on a table, spoke to teachers as they came in, and helped me set up the Infocus projector and laptop. They also wanted to participate. I introduced Ed first so he could share information about the local NAMI group. Julia spoke next about consumers and her willingness to speak to other groups about what it means to live with mental illness, what it means to recover. Over 75 educational personnel were in attendance. They listened intently and asked thought-provoking questions. Ed, Julia, and I left feeling a big sense of accomplishment and a renewed sense of purpose. We revamped our NAMI North Carolina Child and Adolescent Program six years ago. The first thing we did was to ask parents what they wanted us to do. We needed to identify the biggest challenge they face everyday as they cared for their children and adolescents. The overwhelming response was, “We need teachers and other school personnel to understand that mental illnesses are no-fault brain disorders. Our children just need the appropriate accommodations and interventions in order to experience success at school.” What began as a basic two-hour overview of mental illness in children and adolescents has morphed into a more in-depth presentation that focuses largely on how students with neurobiological brain disorders present in the classroom, and at home. Our goal is to share how teachers and other child-serving agency personnel can respond more effectively. We share personal anecdotes about our own children. We feel that makes the presentation more real. We talk a lot about problems with executive functioning, with handling stress, and memory deficits. Our goal this year is to reach 1250 educators or other child-serving agency personnel. We are half way there. Upcoming workshops include a charter high school in Wake County, Wake County Social Workers, Head Start in Spruce Pine, Macon County teachers, an African-American church in Hickory, and all child-serving agencies in Moore and Hoke Counties. I have very knowledgeable family advocates who help with this program: Diane Weaver, Sue Bennett, Phyllis Kennedy, and Colleen Russell to name a few. Please know that we are also available to speak to affiliates about mental illness in children and adolescents. I recently was invited to speak at the NAMI Coastal Division meeting and thoroughly enjoyed it. Let me know if your affiliate would like a workshop.
Criminalization of Mental Illness On October 23, the Human Rights Watch released a report, Ill Equipped: U.S. Prisons and Offenders with Mental Illness. In the report, prisons were described as de-facto “Psychiatric treatment facilities” that are often the worst environments imaginable for people with these illnesses. The Human Rights Watch is a nonprofit, nongovernmental organization dedicated to the protection of human rights worldwide. It investigates and exposes human rights violations and holds abusers accountable. There are now fewer than 80,000 people in mental hospitals. At the same time, the number of people in jails and prisons has quadrupled over the last 30 years. Of the 2.1 million Americans incarcerated today, one in five is seriously mentally ill. Jami Fellner, an author of the Human Rights Watch report was said to have found “unusual agreement” among police, prison staff, judges, prosecutors and human right lawyers that whatever has gone wrong with the system is not something any of them wanted. Fox Butterfield, writing for the New York Times says that this study shows that “prison compounds the problems of the mentally ill, who may have trouble following the everyday discipline of prison life…” The study also pointed out that a higher percentage of prisoners with mental illnesses, compared to those without such illnesses, were disciplined and that solitary confinement is particularly difficult for people with mental illness, sometimes causing exacerbation of the illness. Paul von Zielbauer, of the New York Times, reports that one quarter of New York State prisoners kept in punitive segregations (solitary confinement) are mentally ill. The National Commission on Correctional Health Care and Bureau of Justice Statistics Special Report from 1999 gives us the following statistics:
NAMI’s policy on the criminalization of the mentally ill is as follows: Persons who have committed offenses due to behavior caused by a brain disorder require treatment, not punishment. Prisons and jails never provide an optimal therapeutic setting for persons with severe mental illnesses. Public and private health systems have an obligation to develop and implement systems of appropriate care for individuals whose untreated brain disorders may cause them to engage in inappropriate or criminal behaviors. NAMI North Carolina Represented at Family-to-Family Leadership Institute By Phyllis Kennedy The NAMI Family-to-Family Leadership Institute held in St. Louis November 7 – 9, 2003 was attended by sixty-five NAMI Family-to-Family program directors and representatives from the US, Canada and Mexico. The Institute was planned and presented by Dr. Joyce Burland, author of the Family-to-Family Education Program, assisted by the national staff. Dr. Burland serves as Director of NAMI Education, Training and Peer Support Center. North Carolina’s representatives to the Institute were John Gaskill, Family-to-Family Eastern Regional Manager; Phyllis Kennedy, Family-to-Family State Director; and Beth Greb, Affiliate Relations Director. Beth was a presenter on “Emerging Best Practices in Affiliate Outreach and Regionalization”. This informational and inspiring three-day conference gave opportunities to network with other Family-to-Family leaders, learning new strategies to continue the growth of North Carolina’s Family-to-Family education program. “To Market, To Market: Getting Family-to-Family OUT THERE” was discussed by John Bardi, Director of Advocacy, with Bristol-Myers Squibb, who sponsored the Institute. In addition to marketing the program, information was given on maintaining fidelity to the program, recognizing our volunteers, and planning for sustainability of the program. Lessons learned will be valuable as NAMI North Carolina Family-to-Family begins its new three-region structure.(Eastern, Central, and Western). A highlight of the event was a keynote address from NAMI Executive Director Rick Birkel, Ph.D., sharing the new Campaign for the Mind of America with a special message of appreciation for NAMI’s “unsung heroes,” the Family-to-Family teachers who give so much to help so many. Family-to-Family By Beth Greb Family-to-Family is the signature program of NAMI North Carolina. People say it changes their lives. They wish they had heard about it years ago. Nearly half of students say they heard about the course from word of mouth. Professionals are beginning to refer people to the course. Consumers report that their lives improve significantly when their relatives take the course. When graduates of Family-to-Family join their affiliates, they are a source of new blood, new energy and activism. Family-to-Family is such a high quality product that people who take the course are ready for the next high quality program. Work with your Family-to-Family regional manager and affiliate coordinator to make your affiliate a welcoming home for your local course graduates.
N AMI-NC strongly supports advocacy efforts at the community level through the development of strong Consumer and Family Advisory Committees (CFACs). We are proud of each NAMI member who has dedicated his/her time, energy, and determination to promote better mental health care delivery by service on CFACs in local communities. We are especially grateful to Laurie Coker, Chair of CenterPoint CFAC in Winston-Salem, author of the following CFAC Currents column.The Strong Arm of the CFAC? ADVOCACYThis evening as I spoke to one of our newer CFAC members about service issues related to our children and adolescents, I had to laugh as she said, “Once upon a time, some people might have labeled me as O.D.D.”-- (that is, a youngster with Oppositional Defiant Disorder in psychiatric terminology)—“but now that I’m grown, I guess I’ve just matured into what you call an advocate!”Our CFAC has recently realized the power of its role as a strong advocacy arm of the mental health community as it has responded to a large local medical center regarding the threatened status of our last inpatient treatment unit for our region of the state. Our voice has been valued already, and I know that the ongoing partnering of the CFAC and the LME (Local Management Entity) administration in this situation has made the public mental health appeal a stronger one than had the CFAC not been involved. Its advocacy role was certainly instrumental.A turning point for me was a CFAC training session last Spring which emphasized the role of the CFAC as an advocacy and outreach agency for its community. I had developed such tunnel vision, so determined that the lines and words of page seventy of “State Plan 2002” would describe the role of our CFAC, that I overlooked something important about the character of the CFAC. I had not really grasped the obvious, that advocacy was foundational to the efforts of the Consumer and Family Advisory Committee.Advocacy is the key component. After some rocky beginnings, our CFAC was able to take some small but meaningful steps to respond to issues that have come before us and have already brought about some positive changes. Furthermore, we are able to start targeting issues and to trouble-shoot in ways that we hope will yield results that have been desired by our community for years! And all of this results from advocacy…specific, targeted advocacy with the power of the CFAC behind it!We realize that before there was the CFAC, there was no possibility of such collaborative relationships as we now have. In the past sixteen months, we have developed respectful and effective communication with many community stakeholders, including LME Board members and administrative staff. There are other individuals in an expanding network who now value our role in the successful development of an improved local mental health system.We all understand that advocacy generally means speaking out for the cause of another. Webster’s definition goes a step further to include “defending or maintaining a cause or proposal”. The word “proposal” resonated with our CFAC, as we have been advocating for more housing and housing-related services for the more severely mentally ill folks coming out of John Umstead Hospital. When our CFAC determined that too little of our Expansion Funding related to hospital downsizing was going toward housing (therefore, too many of our homeless mentally ill are being discharged to homeless shelters and—yes—even hotel rooms!) and other realistic supports, we asked for serious discussion with our LME administration and a reevaluation of how we were directing our funds. We broadened our definition of advocacy to include “proposal”. As a result, there was a re-direction of some funds, and a re-targeting of other, original housing-related funding. An additional package of Expansion Funds also was made available to our LME for targeted use. LME staff and CFAC staff had some quick but intensive planning sessions and were able to plan a clustered transitional apartment setting, fully staffed and supported, with staff to be trained in recovery concepts. Also, the proposal includes peer counselors and other case managers to support transition home from state and community hospital, a weakness in our community. Given the positive results of our advocacy efforts as a CFAC, I ask each of you: Are you all asking about your Bridge (Expansion) Funds and how they are being spent?
The future of mental health reform
is in the hands of us advocates.
For those of us who have loved ones who use public mental health services,
or who use public mental health services themselves, this is the best
opportunity we have had to give input into shaping our local mental health
delivery systems! Some CFACs have enjoyed greater degrees of acceptance
than others, and some CFACs can work to achieve more acceptance than they
currently have. CFACs can help each other!
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