March 2001

"A New Day" at DHHS

After a long look at potential candidates, Governor Easley appointed Carmen Hooker Buell as the new Secretary of the Department of Health and Human Resources to replace H. David Bruton, MD.

Prior to her appointment, Ms. Hooker Buell was Vice President for Government Relations at Quintiles Transnational Corporation. She also has served as Group Vice President for Carolinas Health Care System and in 1995, she was appointed Co-Chair of the NC Health Care Reform Commission.

Before relocating to North Carolina in 1995, Ms. Hooker Buell served as a member of the Massachusetts House of Representatives for 11 years. She was the primary author of comprehensive health reform legislation and a leader in Medicaid reform efforts. Had she stayed in Massachusetts, she would have been a likely candidate for statewide office. She moved to North Carolina with her husband, Michael Hooker, former chancellor at UNC Chapel Hill, who died in 1999.

Beyond the official press release, Secretary Hooker Buell is seen as a savvy and astute politician and a real consensus builder. She lobbied hard for the job and now has a chance to prove herself. In just her first couple of weeks in office she has spent considerable time meeting with advocacy groups, including NAMI North Carolina, to gain insight into the needs of families and consumers and how the public system of care should respond to those needs.

Secretary Hooker Buell has stated that along with responding to the budget crisis, mental health will be her top priority. Toward that end, she is moving forward to establish a search committee for Division Director and has signaled her intention to conduct a national search to identify the best candidate.

She has urged her staff to think creatively about how to do things differently and better. She is energetic, articulate, and determined. After a recent meeting NAMI Government Relations Director Beth Melcher said, "It is a new day at DHHS. We look forward to working with the Secretary to make substantial improvements to our system of care."

Come hear for yourself. Secretary Hooker Buell will speak at the NAMI North Carolina Spring Conference on April 20, 2000.

Spring Conference Will Offer Rich Fare

NAMI North Carolina returns to the Research Triangle Park on April 20 and 21 for its annual Spring Conference. The Sheraton Imperial, at I-40, Exit 282, is the setting for our Annual Meeting, Awards Banquet, and a wealth of exhibits, plenary presentations, workshops, and opportunities to network.

The new Secretary of Health and Human Services, Carmen Hooker Buell, will speak at our Awards Banquet on Friday. Three national-level researchers will make plenary presentations:

• Jeffrey A. Lieberman, MD, Thad and Alice Eure Distinguished Professor of Psychiatry, Pharmacology, and Radiology, and Vice Chairman for Research and Scientific Affairs, Department of Psychiatry, University of North Carolina at Chapel Hill;

• Xavier F. Amador, PhD, Director of Psychology, New York State Psychiatric Institute and Professor of Psychology, Columbia University College of Physicians & Surgeons; and

• Jean A. Frazier, MD, Director of the Child Outpatient Program, McLean Hospital, and Assistant Professor of Psychiatry, Harvard Medical School.

A dozen workshops over a wide variety of topics will include the following: George Lynn, an expert in "survival" skills for parents of children with behavioral challenges; national NAMI's Consumer Outreach Manager, Lainie DeMelle;. Dr. Alice Lin, staff to the N.C. Legislative Oversight Committee, talking about system reform; and the new Section Chiefs for Hospital Services, Sherry Harrison, and for Child & Family Services, Martha Kaufman.

A special affiliate development track will include a workshop on Family-to-Family, with Paul and Marcia Garatt of Concord, and management consultant Winnie Morgan from Hillsborough, on how affiliate life can feel like a cruise ship, not a lifeboat.

The founders of CooperRiis, a new "healing farm community" under construction in Mill Spring, will detail this wonderful new resource. Two experts from the Division of Vocational Rehabilitation Services will talk about supported employment for persons with mental illnesses. We'll learn about the Assertive Community Treatment team experiment, and about an experimental mental health court. The popular "Ask the Doctor" workshop will feature Dr. David Smith of Chapel Hill, Board-certified in both Child and General Psychiatry.

Add to it all a Friday night reception—–the perfect time to renew old acquaintances and meet new friends from around the state—–and you have the makings of a great conference. Don’t miss it!

The Future of NAMI

Two significant events took place in late January that offer promising signs for the future of NAMI.

The first was a Southeastern Regional Leadership meeting held in Charlotte. The theme of the meeting was, "Building Stronger State NAMIs in the New Millennium." The first portion of the meeting was a report on the status of NAMI from our National President, Jackie Shannon; Treasurer, Jim McNulty; and Interim Executive Director, Gerry Radke. The gist of the information was that the search for a permanent executive director is in process, that over 75 applications had been received to that point, and the goal was to have the position filled as soon as possible, but no later than the national convention in Washington in July. The financial picture is currently stable, Family-to-Family is secure, but much needs to be done in arriving at a new overall plan for development and fundraising. This will be part of the challenge facing the new executive director.

But perhaps the best part of the two-day meeting was discussion with one's peers about what works in their states and what doesn't. The issues ranged from ways to build effective boards, to meeting fiscal responsibilities, to advocacy, to programs, to membership issues.

It was again quite clear that we in North Carolina are doing a great many things exceedingly well and were sought out for our expertise. But it was also quite clear that we at the state level all needed to do a better job in helping our affiliates do a better job locally. That was a very important part of the message that resounded in all of the discussions, from advocacy to membership.

The other important event occurred at the NAMI Board of Directors meeting in Washington. There has been ongoing discussion between the NAMI board and the executive committee of the State Presidents Council on which I serve. The discussion has focused on how we at the state level can pass information to national in a timely and useful fashion and how NAMI can keep states better informed about current and future plans.

The NAMI board invited a presentation from the Executive Directors, the Consumer Council and the State Presidents Council to address the perceived disconnect. As I participated in that session, it was heartening to see and hear the consensus that emerged as the questions were raised. All three groups committed to the importance of better information sharing and a task force to implement it. There was talk of the need for coordinated fund raising to involve all three levels of NAMI. And the first recommendation from the Consumer Council was, "Address the issue of consumer integration in NAMI by providing consumer-friendly affiliates in the grassroots and growing the assimilation upward through the organization." So our work is ahead of us, but we are asking the right questions and that is the first step toward building a NAMI for the new millennium.

Just the Facts

You've expressed a concern to your social worker, the case manager, or the physician, and it hasn't worked. They haven't responded, or haven't responded fully. Now what?

First, determine whether there's an official grievance procedure for you to use. There must be an appeals process, for example, if a service covered by Medicaid is denied. State hospitals now have internal advocates as well as the Governor’s Advocacy Council for Persons with Disabilities advocate. Make use of the resources available.

If you are having serious problems and no one is listening, it may be time to write a letter. Make it effective. Here are some suggestions:

Address your letter to someone. Use a name. "To Whom it May Concern" means it’s generally of concern to no one in particular. If you have already tried to deal with the social worker, case manager or doctor, call your local mental health center to find out the name of the area program director or clinical director and address your letter to them by name. If you have had no response from hospital staff, find out the name of the hospital director or clinical director. If you have questions, call the NAMI North Carolina office for names and addresses.

If you haven’t received an adequate response from North Carolina state or county staff, you may send your letter to the office of Human Rights and Client Affairs at the Division of Mental Health, Developmental Disabilities, and Substance Abuse Services. You may address your letter to Mary Eldridge, Stuart Berde, Charlotte Jordan, Bob Kurtz, or Susan Mills, Division of MH/DD/SAS, 3015 Mail Service Center, Raleigh, NC, 27699-3015.

Try to keep your letter one page or less. If you can, type the letter, to keep it easy to read. Stick to legitimate grievances: don’t catalogue small complaints. Explain what you hope will be done. Try to keep your expectations reasonable. Unfortunately, many mistakes cannot be "undone."

Don’t use foul language. This gives the recipient an excuse to ignore the content. Don’t expect an immediate response. Unless you are sharing a brief history, don’t drag up ancient incidents. This will only cloud the issue of what’s wrong in the here and now. Don’t begin your relationship with this new contact by threatening legal action in your complaint letter. Legal action should be the last resort for serious misconduct.

Coming Attractions

April 20-21

NAMI North Carolina Spring Conference,

Sheraton Imperial, Research Triangle Park,

May 8-9

NC Guardianship Association conference, Clemmons. Call (919)782-4632 or 1(800)662-8706

July 11-15

NAMI Convention, United By Hope...Working for Change, Washington, DC

Medical Hospitalization May Be Distressing For Those with Psychiatric Disorders

Being hospitalized for a medical illness may have long-term negative effects on those with psychiatric conditions, according to a one-year study of male veterans.

"The findings in this study indicate the need for physicians to evaluate the mental health status of their hospitalized or more seriously ill patients," said lead author Brenda M. Booth, PhD, of the Center for Mental Healthcare and Outcomes Research, at the VA Medical Center, in Little Rock, AK.

Previous research has shown medical illness and hospitalization tend to be hard on everyone--up to half of medically ill patients report depression, anxiety or distress--but those who also suffer from psychiatric disorders may be hit even harder with such symptoms when they are hospitalized, according to the study.

Dr. Booth and colleagues surveyed more than 700 veterans hospitalized for illnesses such as cancer, heart disease, circulatory disorders and injuries. Approximately half of the veterans had either a current or past history of a psychiatric disorder such as a mood, anxiety or substance abuse disorder.

In general, health-related quality of life declined and psychological distress increased over time for study participants with or without psychiatric disorders -- but those with psychiatric disorders tended to be the most impaired, Dr. Booth and colleagues found.

"Our findings indicate the substantial impairments in functioning associated with psychiatric disorders during medical hospitalization are not short term and do not subside but continue over the space of one year," noted Dr. Booth. The study results are published in the January 2001 issue of the Journal of General Internal Medicine.

Dr. Booth and colleagues suggested the use of brief mental health and substance abuse screening tests. Patients could complete these before seeing physicians. "One clinical option is to evaluate for signs and symptoms of distress during a medical crisis, continue to observe during follow-up care and intervene later if distress persists longer than a few weeks," said Dr. Booth.

Psychiatric disorders may require varying treatment strategies, the researchers noted. Depression and alcohol dependency tend to be treatable by primary care physicians, while disorders such as post-traumatic stress disorder may require the expertise of mental health practitioners. Also, to prevent patients with a history of mood and anxiety disorders from relapsing due to the stress of their medical illnesses, primary care physicians may wish to prescribe preventive medication or refer these individuals to mental health providers.

"It is critical that mental health problems be addressed, accounted for and treated effectively when examining health-related outcomes after medical care," Dr. Booth concluded.

Open Minds quarterly is a forum for consumers to get their voices heard. It mainly consists of first person accounts of living with a mental illness, but also includes poetry, short stories, essays/opinions and book reviews.

The primary intent of this publication is to help reduce the stigma that surrounds mental illness in our society, and show that consumer/survivors are intelligent, creative, and artistic human beings. Much of the time, the intellectual capacities of consumer/survivors are overlooked due to stigmatization.

Information on subscriptions or submitting an entry, can be found on the website (www.nisa.on.ca) or by writing to NISA, 680 Kirkwood Drive, Bldg, 2, Sudbury, ON CANADA P3E 1X3.

A Great Investment

This month NAMI North Carolina will pay to exhibit at the N.C. Employee Assistance Program (EAP) Association annual conference in Charlotte. We’ll probably be the only exhibitor advertising services, which we make available for free.

My old professor of marketing wouldn’t approve. You’re supposed to market, advertise, and exhibit, to paying customers! Why does it make sense for NAMI? This will be a great opportunity to get the word out. "EAPs" are designed to steer employees of the companies, which sponsor them, and their families, towards community resources, which can address personal problems that may be interfering with the employees’ work. Psychiatrists, and psychologists. Credit-counseling agencies to help with financial problems. AA, NA, and Al-anon, for drug and alcohol problems.

How about a self-help, grassroots organization which provides support, education and advocacy for persons with serious mental illnesses and their families? Perfect fit! Every EAP professional needs to know about us so that they’ll help us reach the people who need our services. That, in turn, will help us grow.

My marketing professor still wants to know how this is going to pay. That’s where you come in. We need your help – your donations – to keep getting the word out and reaching the people who need us. You’ve been helped by the education and support you found at NAMI. Now we need to help the thousands (yes, thousands) of North Carolina families who haven’t yet heard about us, so that they can get helped too. They in turn will help others, and we will grow to be the loud voice of mental illness in North Carolina. It’s a great investment!

FDA Approves Geodon (Ziprasidone) for the Treatment of Schizophrenia

In February, the Food and Drug Administration (FDA) approved ziprasidone, a new antipsychotic medication for the treatment of schizophrenia. Ziprasidone will be available in pharmacies now under the brand name Geodon.

Developed by Pfizer Inc., ziprasidone has shown to be effective in treating the positive and negative symptoms of schizophrenia, including visual and auditory hallucinations, delusions, motivation difficulties and social withdrawal. Large clinical trials have shown that ziprasidone is associated with little or no weight gain, thus distinguishing it from most other antipsychotic drugs. The most common side effects reported for ziprasidone are headache, somnolence, and abnormal movements.

Over the past several years, the FDA has been concerned with the possibility that ziprasidone and a number of other drugs might increase the very low possibility of a specific, potentially fatal heart-rhythm irregularity, torsade de pointes. The FDA did not approve ziprasidone in 1998 due to evidence that the drug can cause a lengthening of the so-called QT interval of the heartbeat, a change known to predispose to torsade, and asked that specific safety data be gathered. The safety data were submitted to the FDA last year. Although "QT prolongation" predisposing torsade is still a theoretical concern, over 4000 patients were treated in clinical trials without evidence of the heart-rhythm irregularity. In addition, the overall mortality rate during the trials was similar to that seen with placebo and with other antipsychotic drugs.

NAMI representatives were the only public witnesses to testify at the FDA Advisory Committee meeting, and asked the Committee to take into account the full range of benefits and risks in making a decision. The NAMI witnesses, including NAMI Consumer Council member Shannon Flynn, noted risks of treatments associated with weight gain, the possible effects of weight gain on adherence to treatment, and the desirability for NAMI members of having a full range of therapeutic options. The FDA concluded that the drug should be available to patients and physicians, in part because of its different profile of benefits, side effects, and risks.

The FDA labeling does not include a so-called "black-box warning" and does not require an EKG prior to or during treatment. The labeling does warn physicians and patients about QT prolongation and the possible risk of sudden death. The FDA labeling suggests that doctors use their best judgment, based on the health status of the individual, as to whether to use ziprasidone as a first line medication or only after other available medications have failed. There are no requirements that patients have regular heart check-ups while taking this medication.

NAMI members may also recognize Geodon (ziprasidone) by its former proposed brand name, Zeldox.

Interviewers Needed for Olmstead Project

The Center for Development and Learning (CDL) at the University of North Carolina at Chapel Hill is looking for interviewers to complete one phase of the State's Olmstead Plan.

The U.S. Supreme Court ruled in June 1999 in the case of Olmstead v. L.C. that the Americans with Disabilities Act (ADA) applies to individuals living in institutions and requires that they receive services in the most integrated setting appropriate to the client's needs.

In direct response to the Olmstead decision, CDL is coordinating a project to interview individuals who reside in North Carolina's 13 state facilities for persons with mental illnesses, developmental disabilities, and emotional disturbances. The purpose of the interviews is to assess each individual's preference for where he or she wants to live.

Interviews will take place at all 13 state facilities, which are clustered in several areas of the state. Interviewers must provide their own transportation and will be responsible for arranging the time for interviews to take place. Interviewers will be paid a flat rate for completing each interview and for attending one follow-up treatment/service planning meeting. The length of interviews will vary depending upon the individual being interviewed.

Interviewers will also be paid a flat rate for completing a half-day of training. The training will consist of background information on the project, procedures for arranging the interviews, and instructions for administering the protocol.

Interviewers should have experience in developmental disability and/or mental health. Ideally they should have knowledge of self-advocacy and have personal or professional experience that fits the tasks. There are no minimum education requirements.

Interested individuals should contact Jo Ann Campbell for an application. Call (919) 966-4720 or email jo.campbell@cdl.unc.edu.

Bridging the Gap

The North Carolina Client Assistance Program (CAP) is available to serve clients or applicants of the Division of Vocational Rehabilitation Services, the Independent Living Rehabilitation Program, and the Division of Services for the Blind.

The purpose of the program is to help clients or applicants understand services available to them through the rehabilitation programs. In addition, the Client Assistance Program provides a forum for clients to discuss grievances if an amicable resolution has not been resolved between them and their counselor.

The CAP services persons with disabilities by providing information and referral services, individual case advocacy services, and/or systems advocacy policy review. If a client feels he/she needs information, mediation, or negotiation during the rehabilitation program, the client should write or call the Client Assistance Program at the following address:

NC Client Assistance Program Email: Kathy.Crow@ncmail.net

2801 Mail Service Center

Raleigh, NC 27699-2801 1 (800) 215-7227

Nami Notables

Kathy Chrisco, Family Advocate

Kathy Chrisco lives and works in Burlington. Her younger daughter, Torie, was diagnosed at age five with bipolar disorder, a diagnosis once reserved for adults. Torie is very smart and out-going, but often has a difficult time in social situations. She is now eight years of age and attends EM Holt Elementary in Burlington. This is Torie's third school and the first school to understand the nature of bipolar disorder and work at accommodating her needs.

One big reason Torie is experiencing success at school this year is her mother's relentless efforts at advocacy. Kathy is fairly new to NAMI, having joined only a year and a half ago. She is teaching her second Family-to-Family Class with Irmgard Miller. Together they have reached over 32 families. She has co-presented NAMI North Carolina's school presentation, "Understanding Serious Mental Disorders in Children" at four locations in Burlington. As a matter of fact, Kathy IS the reason the word is getting out in the Burlingon-Alamance County Public School System!

Afternoons find Kathy working at a gas station not far off I-40, and if she thinks you work for the school system, she will give you a brochure on NAMI North Carolina’s school presentation. If she finds out you are a parent, she will tell you about NAMI and visit your child's school so she can tell the principal about the presentation.

Kathy tells the educators attending our workshop about how NAMI saved her life. "When I first found NAMI, I was a desperate mother seeking all the help I could get. I had been dealing with so much from the school system and figured the only way to fight back would be to educate myself. From there I found myself wanting to teach others, help them like I was helped when I came to this organization."

Kathy is sympathetic to the situations teachers and other school personnel find themselves in as they try to help children with serious emotional disorders. They "can't know what they don't know" as we learn in Family-to-Family.

"Through NAMI I want all educators to understand what they are dealing with. Teachers, school guidance counselors, psychologists, nurses, and social workers, all need to understand these are no-fault brain disorders in children. They need to empathize with these children and hear about the despair parents feel. We need more and better resources out there for us parents with special kids in the school system." Kathy knows that through NAMI these things will happen.

We know that with dedicated members like Kathy Chrisco out there spreading the word it will happen for sure! Thanks Kathy!

The Attention Different Child

The term "Attention Different" is used here to identify children who pay attention differently, but who are not deficit in the sense of Attention Deficit Disorder. Whereas a normal child will pay attention to what adults around him direct him to attend to, be it his schoolwork, his chores, or his performance of some task, the Attention Different child marches to his own drummer by fate and circumstance.

The attention of the child with Attention Deficit Disorder (ADD), for example, may be captivated by a rapidly changing inner collage of images, colors, feelings, and thoughts.

The obsessing child stares fixedly through you, showing in his classic "fifty yard stare" that he is putting all his attention on the obsessive feelings flickering through his mind. The Tourettic child pays attention to the flickering commands of his musculature to tic this way or that or utter strange sounds. The child with Bipolar Disorder is captivated--pays attention to--extreme internal stimuli such as his mood states of joy, elation, and depression.

The child with Asperger’s Syndrome is powerfully self-absorbed, paying attention only to his own thoughts and anxieties, because paying attention to things in the outer world is so difficult. The Attention Different child is born with a tendency to be oversensitive to certain types of stimulation. The Asperger’s child typically cannot stand to be talked to directly (direct communication is felt as overwhelming). The ADD child may not be able to tolerate the feeling of his clothing on his skin.

And a profound undersensitivity to stimulation may create a craving for it. A child with Attention Deficit Hyperactivity Disorder (the form of ADD which includes hyperactivity) cannot experience satisfaction from anything and will engage in dangerous and destructive behavior for a thrill. At least, for a moment, he feels alive. The depressed child may chronically antagonize people around him because this state of perpetual conflict and crisis give him a little shot of energy and relief from the darkness he feels.

The craving for stimulation, or fear of it, pulls the child’s focus in some particular direction and forms his personality. The child with Bipolar Disorder focuses on the negative aspect of everything. The ADD child moves into conflict with all the adults around him. The personality of the child with Asperger’s Syndrome is formed by his anxiety and inability to cope with the practical aspects of getting through life. He is the epitome of the "absent-minded professor."

You help kids with these issues to the degree that you:

• structure low stress environments at home and school,
• help them recognize and manage their sensitivity to stimuli and internal stress levels,
• help them bring their gifts to the task of regulating their mood and attentional states.

Book Review—The Bipolar Child

by Demitri F. Papolos, M.D., and Janice Papolos
Broadway Books New York, 1999

Reviewed by Beth Greb

The information in this volume is not only new and exciting, but comes from the most authoritative source possible, the families of children with bipolar disorder. The authors subscribed to the listserv of an online support group, BPParents (Bipolar Parents) for several years, had parents fill out questionnaires and talked with many on the phone for hours. They even interviewed some of the children and some adults who had suffered from bipolar disorder during their childhood.

The Papoloses tell us that one-third of children who are initially diagnosed with ADHD (Attention Deficit Hyperactivity Disorder) actually have bipolar disorder. As many as half of children who are diagnosed with depression are actually presenting the first manifestation of bipolar illness. For these reasons, it is vital that a child be evaluated carefully before beginning treatment for either ADHD or depression. Stimulants and antidepressants can induce the first episode of mania in children or adults. If there is any history of mood disorders and/ or alcoholism in either parent's family, the possibility of bipolar disorder should be considered. If both parents' families have such a history, the physician should be told. Of children with bipolar disorder, 80% have mood disorders and substance abuse on both sides of the family.

Some of the common features of childhood bipolar disorder include precociousness, extreme separation anxiety, night terrors, fear of death, rages, oppositional defiant disorder, sensitivity to stimuli, problems with peers, and rapid cycling. Children can cycle several times during a day, or even an hour.

The DSM-IV basically requires the same criteria for the childhood disorder as for the adult disorder. But children present the illness differently. It is not uncommon for a child to have ADHD, OCD (Obsessive-Compulsive Disorder), anxiety, Oppositional Defiant Disorder and even Tourette's. Unraveling these disorders can be difficult. It is imperative to find a doctor who knows about this particular illness. It is equally important to provide the doctor with a family history and with a history of the child's behaviors.

The book contains case histories, an explanation of the physical causes of multiple symptoms in these children, advice on how to live with the illness at home and in the school system. There are even chapters on hospitalization and insurance.

If there is any possibility that some child you know has bipolar disorder, this is the definitive book. For those who did not get a diagnosis until adulthood, the book is a powerful confirmation of that gut feeling many of us had years ago, that something was wrong, and the family knew more about the illness than the doctor. The fact that families contributed so much to this book is a testament to the medical field's finally seeking knowledge at the source.