Contents

A Message From Our President
Final Report of President’s New Freedom Commission on Mental Health
Dates to Remember
A Legislative Session of “Firsts"
Final Version of the Child Mental Health Plan Available Online
The Elimination of Barriers Initiative (EBI) in North Carolina
Your Membership is Important to You—and NAMI North Carolina
Family-to-Family Update
New Project Sponsors Two Day Evidence-Based Practice Track
Life Plan Trust: Assistance with Future Planning
Psychiatric Drugs and Diabetes
Looking at the Needs of Siblings
NAMI North Carolina Affiliate News Briefs
Ultradian Cycling in Children
Peer Bridgers Comes to Wake County
Mental Health Reform and You—Or, What’s a CFAC
NAMI Saved My Life
Kentucky’s Gain Our Loss
Mental Health: Culture, Race and Ethnicity

A Message From Our President
By Ken Farrington, President, NAMI North Carolina

Two years ago, in the September/October issue of Clippings, there was an article on the second page that I have revisited in preparing this article. In that article I announced that I had taken over as president of NAMI North Carolina, and that Beth Melcher had agreed to be interim director of NAMI North Carolina while we searched for a new Executive Director. This was right after the attacks of September 11, 2001.

Two years later, I am now announcing that our Executive Director, Kay Flaminio has resigned. As I do so, I want to remind you that we have been an increasingly respected voice on mental illness in North Carolina during our first twenty years, and we will continue to be a forceful presence in improving the lives of people who have mental illness and their families. NAMI’s real strength lies in its members who share their personal struggles and go out of their way to help others who are feeling the pain of dealing with mental illnesses. We need NAMI and NAMI needs us more than ever during this transition period. Let me assure you that board members have moved swiftly to fill the gaps while we look for a new executive director. Our staff is working tirelessly to be sure nothing is left undone. We have all learned a great deal during the past two years that will ensure a future that is stronger than ever.

This is the time for you to let us know how important NAMI North Carolina is to you. We on the board of directors want you to know that you are our first priority. Without you there would be no “North Carolina Voice on Mental Illness.”

Ken Farrington

In April, 2002, the President announced the creation of the New Freedom Commission on Mental Health and declared, “Our country must make a commitment. Americans with mental illness deserve our understanding and they deserve excellent care.”

After a year of study, the New Freedom Commission has released Achieving the Promise: Transforming the Mental Health Care in America. The report finds that “recovery from mental illness is now a real possibility...Yet, for too many Americans with mental illness, mental health services and supports they need remain fragmented, disconnected and often inadequate… Today’s mental health care system is a patchwork relic—the results of disjointed reforms and policies. The system presents barriers that all too often add to the burden of mental illness…”

The Commission’s report recommends a fundamental transformation of the nation’s approach to mental health care. The goals and recommendations include:

GOAL 1: Americans Understand that Mental Health is Essential to Overall Health —Recommendations:

A Improve upon and implement national strategies for suicide prevention and campaigns to address mental illness stigma.

B Address mental health with the same urgency as physical health.

GOAL 2: Consumer and Family Driven — Recommendations:

A  A single individualized plan of care for each person with serious mental illness (SMI) or serious emotional disturbance (SED).

B Involve consumers and families in orienting the system toward recovery.

C Align relevant Federal programs to improve access and accountability for MH services—and changes to Medicare or Medicaid should seek to offer beneficiaries access to the most up-to-date treatment and services.

D Create a comprehensive State Mental Health Plan.

E Protect and enhance the rights of people with mental illness.

GOAL 3: Eliminate Disparities in Mental Health Care —Recommendations:

A Establish financial incentives to recruit and retain mental health professionals in rural area.

B Improve access to quality care that is culturally competent and in rural and geographically remote areas.

GOAL 4: Early MH Screening, Assessment, and Referral to Services Are Common Practice — Recommendations:

A Promote MH for the young and improve and expand school mental health programs.

B Screen for co-occurring mental and substance abuse disorder and like with integrated treatment.

C Screen for mental disorders in primary health care across someone’s lifetime and connect them to treatment and support.

B Advance evidence-based practices using dissemination and demonstration projects and create a public-private partnership to guide the implementation.

C Improve and expand the workforce providing evidence-based MH services and supports.

D Develop knowledge base in four understudied areas: MH disparities, long term effectiveness of medications, trauma and acute care.

GOAL 6: Technology Used to Access MH Care and

Information — Recommendations:

A Use information technology—telehealth to improve access and coordination of mental health care especially for those in remote areas.

B Develop and implement integrated electronic health record and personal health information systems.

To review the report, go to: http://www.mentalhealthcommission.gov/reports/FinalReport/downloads/downloads.html or contact SAMHSA’s Information Center: 1-800-789-2647.

Advocates have sent a strong message to the Governor that If ANY cuts are made in the budget for services to persons with disabilities, the impact on the lives of these individuals and their families would be devastating. It is not being dramatic to say people could die. Make no mistake - consumers and families would lose services. It is imperative to get the message to policy makers that services to persons with mental illness (and developmental disabilities and substance abuse) can no longer be used as the “cash cow” to balance the state budget.

Another ongoing issue that needs monitoring and advocacy is to assure that the $12.5 million put into the Mental Health Trust Fund stays in that fund for the purpose of building community service capacity. Last session the legislature placed $47 into the MH Trust Fund. The Administration had to take $34.5 million to help the state’s operating budget. While the Governor’s office said that replacing those funds would be their top priority, that has not happened due to the worsening revenue picture.

This year’s “successes,” and they are successes given the tough revenue times, happened because families and consumers, providers and advocates continue to contact legislators and policy makers about the importance of services to the people we care so much about. Please continue to do that when you are asked – and use www.cpdmi, the website of the Coalition for Persons Disabled by Mental Illness, which has a cyber advocacy component that links you with members of the legislature. Your contacts do make an impact.

This is another area with a “first.” Bills have been

introduced to provide mental health parity in insurance coverage in North Carolina for the last decade. A bill passed the Senate in 1997, but efforts to get the bill voted on in that session, and every session until 2003, failed. Regardless of which party was in control, the chair of the House Insurance Committee would not bring the bill up for a vote. That changed this year. There was a vote, and it told the story.

Rep. Martha Alexander, (D-Mecklenburg), introduced House Bill 654. Rep. Alexander has been the leader of the effort to pass mental health parity since 1994. Thanks to her efforts and the leadership of Rep. Hugh Holliman (D-Davidson), who co-chairs the House Insurance Committee, the bill was heard in the committee on several occasions, and a vote was taken. That is the good news.

The bad news – despite overwhelming information supporting the bill, including cost data from the more than 30 states who have passed some type of parity legislation – the bill was defeated by an overwhelming vote in the committee. The opponents say it isn’t about mental illness or substance abuse, it is about cost. Yet, Rep. Alexander read a long list of “mandate” type bills, which have passed in the last few years with only minor opposition from the insurance and healthcare industry. She asks, like we all need to ask, why is mental illness treated differently?

The group of organizations and legislators who have worked so hard on this issue are not giving up. People with mental illness deserve no less than to be treated like anyone with a physical illness. We will need your help.

A large group of advocates for children’s mental health needs met this past spring to draft a new version of the Child Mental Health Plan. This was the first time that child-serving agency personnel from such a variety of state agencies were called together to help draft the plan. The Department of Social Services, the Department of Public Instruction, the court system, the Department of Juvenile Justice and Delinquency Prevention joined the Division of Mental Health/DD/SAS in working on the plan. Family advocacy organizations like NAMI North Carolina, the Mental Health Association, and NC Families United were also well represented. These people help form the group that meets monthly as the State Collaborative for Children’s Mental Health.

The intent of the new Child Mental Health Plan is to describe how the Division will go about serving the mental health needs of the children and adolescents in our state. The plan lays out the structure within which the state will care for children who receive publicly funded mental health services. This is yet one more step toward mental health reform. What we hope to see as a result of the plan is meaningful family involvement and support, community-based services that are evidence-based, and a strong collaboration among the agencies that serve our children. In NAMI North Carolina’s response to the draft of the plan, a lot of us voiced concerns over operational issues. Don Willis of the Division has shared with the State Collaborative that these concerns will be addressed in the next phase of the planning. Next, the Division will develop a monograph on the plan. Then a project team will begin work on the actual implementation of the plan.

To read the plan, go to the Division of Mental Health/DD/SAS website at: http://www.dhhs.state.nc.us/mhddsas and click on Communication Bulletin #11.

For NAMI North Carolina’s response to the plan, go to www.naminc.org.

Jason Gosnell, an adolescent from Madison County participated recently on a panel that included other youthful consumers. Jason told the one hundred plus audience of educators, child advocates, child/adolescent-serving agency personnel and family members how his friends began to “slip away” when he became depressed in middle school. He was later diagnosed with bipolar disorder and high functioning autism. His mom, Terri, is a strong advocate for young families in Madison County. She was understandably proud of her son and his ability to articulate so clearly what it is like to develop a neurobiological brain disorder as a young person. Included on that panel from NAMI North Carolina, were Tracy Mixson and Diane Weaver. Both strong advocates added vivid personal accounts as only consumers and family members can when they discuss coping with mental illness.

The panel that Jason was on was an integral part of a meeting in North Carolina to kick off our Elimination of Barriers Initiative. Our state was one of eight chosen to participate in this pilot social marketing campaign whose aim is to reduce the stigma of living with a mental illness. The Substance Abuse and Mental Health Services Administration’s Center for Mental Health Services (CMHS) is partnering with various public relations firms to produce and test educational materials and public service announcements on radio, television and in the print media. The Division of Mental Health/Developmental Disabilities/Substance Abuse Services is responsible for heading up the three-year project in North Carolina. The program then should go nationwide.

The primary target audience in North Carolina is high school educators. North Carolina will have a marketing plan tailored to meet the unique needs of our citizens. A tool kit will be developed by Vanguard Communications, Inc. that can be utilized by high schools across our state. There will be an evaluation component and technical assistance. What does all this mean to us? It should be good news that the campaign to end stigma continues. We will have new tools to use in fighting stigma and we’re not limited to focusing on high schools. Talking to educators and other child-serving agency personnel is already a priority with NAMI North Carolina.

As a matter of fact, over the past year we have started doing workshops on preschoolers with these disorders. This is a big part of what your Young Families Program is about. Over 1000 teachers and other personnel attend our workshops on “Understanding Serious Emotional Disorders in Children and Adolescents” every year. NAMI also has the Family-to-Family Program and “In Our Own Voice,” a mental health consumer curriculum for educating the public, that address the problem of stigma. “Breaking the Silence,” a curriculum for schoolteachers, is also available from NAMI Queens/Nassau. In this effort North Carolina will have a variety of educational tools from which to choose. Expect to hear more about this important initiative in the coming months.

The dues year in NAMI North Carolina is January 31– January 30. However, you will be asked in October to renew your membership by November. Why is that? Some of you may have paid dues less than a year ago. Why do you have to pay again? You might ask, “I paid my dues! What is the problem?”

NAMI North Carolina’s local affiliates will soon be asking you to renew your membership. Your checks are then deposited, and your local treasurer sends a check to NAMI North Carolina with a list of members. It is not unusual for a delay of a month to occur at this stage. Your treasurer probably does the paperwork in his or her spare time.

Checks come in to the office in Raleigh with an accompanying membership list. Information is entered into our database, addresses and zip codes are checked, and then the same information is entered into NAMI’s database. It all takes time.

The bottom line——–Please, renew your membership as soon as possible for 2004. Be a part of North Carolina’s Voice on Mental Illness.

Starting in October, Phyllis Kennedy will be interim director of our Family-to-Family Program. The NAMI North Carolina Board of Directors has a Family-to-Family Task Force that will assist Phyllis during the transition. Becky Faucette, Chair of that committee, and Phyllis are making arrangements for the next Family-to-Family Teacher Training to take place October 31-November 2 in Greensboro.

Phyllis and Becky are among the seven Family-to-Family teacher trainers in North Carolina. Before they became trainers, they were among our first teachers of the course in their own affiliates. Family-to-Family has grown tremendously since 1996. It now encompasses almost every affiliate. Running the program has become more than a part time job for one person. A team is needed to run it properly. Regional managers and affiliate coordinators are needed to keep the course running smoothly.

We can be proud of all our volunteers who have presented the course to thousands in the last few years. Family-to-Family is in excellent hands.

Many thanks to Phyllis and to Becky.

The North Carolina Science to Service Project, a new initiative to support the implementation of evidence based practices, will co-sponsor a two day track November 17-18 at the Council of Community Programs annual conference in Pinehurst. National leaders in the area of evidence- based practices will provide both an overview of evidence- based practices as well as specific implementation strategies and experiences. Presentations will be followed by stakeholder panel discussions on implementation issues relevant for North Carolina.

Robert Drake, M.D., Ph.D. and colleagues at the New Hampshire-Dartmouth Psychiatric Research Center identified evidence-based practices for people with severe mental illness in six areas: medications, assertive community treatment, supported employment, integrated services for co-occurring mental health and substance abuse disorders, family psychoeducation, and illness self-management. With the support of the federal Center for Mental Health Services (CMHS) and the Robert Wood Johnson Foundation, Dr. Drake and his colleagues developed these six practices into a series of resource “toolkits” to assist in implementation and integration of evidence-based treatments into public mental health systems. This session will review the six evidence-based practices that have been identified for adults with severe mental illness and the essential elements of these practices.

Molly Finnerty, M.D., Director of Evidence-Based Medicine and Clinical Guidelines for the New York Office of Mental Health, will review efforts in New York to develop implementation strategies for evidence-based practices in community settings through the “Winds of Change” campaign. She will discuss specific strategies, ways to support implementation of evidence-based practices, and barriers to implementation.

Assertive Community Treatment Teams (ACTT) are a well-established evidence-based practice for adults with severe mental illness. Marvin Swartz, M.D., Professor and Head of the Division of Social and Community Psychiatry at Duke University, contributed to the development of the ACTT tool kit, and will review the research on ACTT, essential elements of the practice, individuals best served, expected outcomes, and components of the ACTT tool kit.

Patrick Boyle, LISW, CCDC III-E, serves the Ohio Substance Abuse/Mental Illness Coordinating Center of Excellence as Director of Clinical Training, coordinating and providing training and consultation for programs implementing the New Hampshire-Dartmouth Integrated Dual Disorder Treatment (IDDT) model in Ohio. Mr. Boyle will share integrated dual diagnosis treatment and the implementation experiences from Ohio.

The Science to Service Project, a sponsor of the conference track, was launched to support the Division of MH/DD/SAS commitment to implement evidence-based practices in North Carolina. The project was initiated in June 2003 when Beth Melcher, Ph.D. was hired as project director. In August, the Division of MH/DD/SAS was awarded a NIMH/SAMHSA grant to support the Science to Service Project and its efforts to promote and plan for implementation of evidence-based practices. The goals of the project are ambitious. Over the course of the year the project will educate providers, consumers, families, and administrators about evidence-based mental health practices, evaluate current service implementation, and, with input from a broad consortium of stakeholders, develop a comprehensive statewide implementation agenda that will guide policy decisions and State Plan revisions.

“The evidence-based practices track offers the opportunity to provide essential information to the range of groups and individuals most directly involved with these practices either as providers, recipients, administrators, or policy makers,” says Melcher. “It also is an opportunity to begin to create a dialogue, common vision, and shared commitment to implementation of evidence-based practices in North Carolina.”

Make plans to attend the Council’s conference in Pinehurst and take advantage of this important learning opportunity.

For more information about the Science to Service Project visit their web site at www.ncs2s.org .

Many families put off writing a will or making other arrangements for financial support or care for their loved ones: It is an unpleasant topic to face. However, it is essential that families of persons with mental illness develop an effective estate plan. Individuals receiving Medicaid, SSI or special assistance can have very limited assets to continue their eligibility, a maximum amount of $2000. If they inherit money directly, they could lose their benefits until the assets are again below $2000. If you die without a will, North Carolina law divides your assets, and your children will inherit part of your estate. The law does not make any exceptions for persons who are on SSI and Medicaid. Life Plan Trust was established to help families of individuals with disabilities to plan effectively for the future.

Life Plan Trust is a private, non profit 501(c)(3) organization established in 1991 by NAMI North Carolina, the Arc of North Carolina, UCP of North Carolina, and the Autism Society of North Carolina. The purpose was two-fold: to help families plan for future care of their loved ones, and to serve as trustee for individuals with disabilities. Our Board of Directors is appointed by those spon-soring organizations. Our first trust was funded in 1994, and today we manage over 4 million dollars for 76 active trust beneficiaries. We also have over 200 future plans of care with developed Careplans that will go into effect after the death of both parents. Most beneficiaries continue to qualify for Medicaid. The disbursements from the trust are restricted to supplemental needs (no food, clothing, or shelter) for Medicaid recipients. We are also able to serve as trustee for non-Medicaid eligible individuals.

Each individual who seeks services from Life Plan Trust goes through a screening process. Forms are filled out by the applicant, or by his or her case manager, family or residential program staff. The admissions committee of the Board of Directors then reviews the application. If the applicant is accepted, a Careplan Development conference is held and an individualized Careplan, spelling out the roles of agencies, caregivers, family members and the Life Plan Trust staff, is created. Please note that Life Plan Trust is not able to provide residential care or supervision: our staff work with direct care providers and family members to ensure a high quality of care for the beneficiary. Family may enroll now and fund the trust in the future, or fund the trust now and activate the Careplan immediately.

Our fee structure is different from most bank trust departments. Rather than a percentage of the trust proceeds, we charge by the service hour. The current charge per service hour is $65. Travel time from our office would not be counted in the hourly rate, but phone, correspondence, visits, or advocacy activity would be. An estimate of the funds needed to support the Careplan services is provided in advance of, or at the Careplan Development conference, including an estimate of fees over the beneficiary’s lifetime. At the end of the beneficiary’s life, if there are funds left in the trust, part of the remainder reverts to Life Plan Trust. We use these funds to help assist other disabled beneficiaries and to help assure the program’s financial self-sufficiency. The amount retained ranges between 10—50%, depending on how long the beneficiary has received trustee services. The other portion of the trust funds may be left to family members or other individuals or charities. If the trust was funded with funds belonging to the individual with a disability, rather than from funds from a family member, there may be a payback due to Medicaid.

Trust funds are invested in equity funds and short term, high quality bond funds. The portfolio is more conservative than what a working individual would invest funds for retirement in. All funds are invested together in a pooled fund for administrative and fee savings, but each beneficiary has an individual sub-account , with their share of investment income credited to it. Funds management is provided by Wachovia Charitable Services Group. In addition to the service hour fees mentioned above, there is an initial enrollment fee, an annual fee with includes updating the Careplan, and legal fees for having a trust drafted by an attorney.

In addition to providing the direct client services described above, Life Plan Trust staff can also provide information and referral services and presentations for families and professionals. Services are provided statewide, with our main office in the Triangle, and a field office in the Asheville. Information packets on effective future planning and government benefit eligibility are available free upon request.

Our staff members are happy to speak at local affiliate meetings on future planning. Continuing Legal Education seminars for attorneys (tuition fee of $200) will be held November 14th (Asheville) and December 5th (Raleigh). Please note that Life Plan Trust cannot provide legal advice or review existing legal documents.

NAMI North Carolina was an original sponsoring organization of Life Plan Trust. Life Plan Trust continues to benefit from financial and programmatic support from this vital organization. We hope that you will think of Life Plan Trust as a valuable resource for your future planning needs. For further information, call 1-888-301-0799, or email lifeplantrust@earthlink.net.

Research published in the British Medical Journal and other journals suggest atypical anti-psychotics can cause

diabetes. It is suspected that atypical anti-psychotic medications may interfere with a kind of chemical process both in the brain and body and lead to the development of a condition called insulin resistance and diabetes.

A study from Duke University Medical Center suggests there might be a link between at least one drug used to treat schizophrenia and the onset of diabetes, a disease widely recognized as one of the leading causes of death and disability in the United States. The drug, olanzapine (trade name Zyprexa), belongs to a relatively new family of medications called atypical anti-psychotics, which are used to treat psychosis in schizophrenia, paranoia and manic-depressive disorders. Other atypicals are clozapine, risperidone, quetiapine and ziprasidone. The researchers found metabolic abnormalities ranging from mild blood sugar problems to diabetic ketoacidosis and coma in patients who had been prescribed olanzapine, most of whom were otherwise not known to be diabetic.

Diabetic ketoacidosis (DKA) is a serious condition in which a person experiences an extreme rise in blood glucose level coupled with a severe lack of insulin, which results in symptoms such as nausea, vomiting, stomach pain and rapid breathing. Untreated, DKA can lead to coma and even death.

The study merely suggests an association between the drug and diabetes, said Doraiswamy. Further studies are needed to offer more conclusive evidence of a direct causal relationship. If future studies confirm the findings, he said that perhaps the FDA should consider including a stronger warning label for these drugs.

The British Medical Control Agency and the Japanese Health & Welfare Ministry, agencies similar to the U.S. Food and Drug Administration (FDA), have issued warnings about the risk of diabetes for patients prescribed Zyprexa.

It was also reported in the American Journal of Medicine that the FDA had received 384 reports of diabetes associated with the drug clozapine.

“The average age of adults showing signs of diabetes after taking olanzapine was about 10 years younger than what is generally seen in the community,” said Doraiswamy. “The younger age at onset, plus the number of serious complications and the improvements reported when the drug was stopped, all suggest a link to the disease. However, until we know if there are risk differences among drugs in this class, it is important for physicians to watch all patients receiving this medication for signs of diabetes so that it can be detected quickly and managed.”

Dr. Michael J. Sernyak, of the VA Connecticut Healthcare System in West Haven, and associates identified more than 38,000 patients treated for schizophrenia in the Veterans Health Administration system for whom an anti-psychotic drug was prescribed between June and September of 1999.

Younger patients with schizophrenia are more likely to be diagnosed with diabetes if they are treated with an atypical as opposed to a conventional medication, data from the Veterans Health Administration study indicate.

Among patients younger than 60 years old, the rate of diagnosis of diabetes was significantly higher for those receiving atypical agents than for those receiving conventional anti-psychotics. Over sixty years of age, the rate of diabetes seems to remain the same as for persons not taking the atypical anti-psychotics.

The VA research team suggests that the atypical drugs, rather than precipitating the onset of diabetes, hasten its onset among those at risk. Dr. Sernyak pointed out that the prevalence of diabetes is much higher among people with schizophrenia than in the general population.He suggests that patients be tested for fasting blood glucose levels twice a year, especially if they are being prescribed an atypical antipsychotic drug. On the other hand, he does not advocate going back to the conventional anti-psychotics. Rather, physicians should discuss the risks with their patients. “Patients are willing to make incredible tradeoffs to stay free of psychosis,” he emphasized. (American Journal of Psychiatry: 2002;159:561-566)

Some drug companies say people with schizophrenia tend to have unhealthy diets, which put them at risk of getting diabetes.

The newer drugs also appear more effective in preventing relapse in patients with schizophrenia and may be more effective in treating certain aspects of the illness. Many patients prefer atypicals, which they say are easier to tolerate than older medication.

Fortunately, diabetes is easily detected and manageable with diet, exercise and medication.

When one member of the family suffers from mental illness, the lives of other members may be significantly affected. It is important that parents not overlook the needs of other children in the family when the ill member is requiring so much attention. Just how siblings may be affected and to what extent can vary, but age can be an important factor.

Young children are especially vulnerable to such stressful events; because young children are less able to articulate what they are experiencing, parents might assume that they are doing all right. These children have limited life experience that could provide some perspective on their situation. Lacking understanding, they may harbor strange ideas about mental illness and feel that in some way they are responsible for what happened.

Parents need to encourage communication so that they know what their young children are thinking. Parents need to understand their children’s feelings without being judgmental. If a child is made to feel guilty for expressing strong negative feelings, further communication could be stifled.

Siblings may feel that their ill brother or sister gets away with conduct not allowed to them. They may feel resentful, anxious and unsafe with a person whose behavior is so unpredictable. They may think their parents should be able to prevent these family trouble. They may regress in behavior and try to get parents’ attention, or they may try to grow up too quickly so as not to cause their parents more grief.

During later childhood, children learn a great deal from friends and classmates, and they care a great deal about how well they are accepted. They are sensitive to the way their homes and family appear to their friends. Parents may find siblings spending more time at the home of friends and less at their own home.

Children of this age are usually developing a strong sense of justice. They expect everything in life to be fair. They may not accept the fact that he or she really has a disability. Older siblings may feel that they have to share many responsibilities in the home because their parents are so over burdened. They might assume a “parentified” role that places excessive demands on immature shoulders. In the words of one adult sibling, “I feel that I missed out on being a kid.”

When the onset of mental illness occurs in adolescence or young adulthood, siblings may feel the loss keenly. The person with whom they have grown up is suddenly a very different individual. Siblings have to learn all over again how to relate to this very different person and what role to play in his or her life.

The period of adolescence and young adulthood is a time of many challenges and transition. The experience of having a sibling with mental illness may influence the way many of these decisions are made.

This is the time of life when young people are coming to terms with their sexuality. They are dating and considering marriage and family. Troubling questions about mental illness are certain to arise. What do you tell people you are dating about mental illness and how do you explain your relative’s strange behaviors?

The risk to future offspring must be addressed. In addition, consideration must be given to the role the person expects to play in the life of a sibling both now and in the future. Even the issue of whether to marry and when to do so may be influenced by the family situation. An adult sibling may decide to delay marriage or not marry. Another may enter marriage early to escape his or her troubled family life.

Some siblings are drawn to careers as professional caregivers. Others may deliberately avoid such careers because of their painful past. Some may choose to move as far away as possible to create space for themselves to work out their feelings. Others may choose to stay close to give support to their ill sibling and share parental burdens.

As young people in the family begin planning their futures, excited about the many possibilities for their lives, they may feel overwhelming sadness for the sibling who is left behind. They may experience “survivor’s guilt” for having been spared the enormous tragedy of mental illness.

Note: For further reading on this topic

Mad House: Growing Up in the Shadow of Mentally Ill Siblings by Clea Simon. Penguin USA (Paper); (May 1998) ISBN: 0140274340

Hidden Victims - Hidden Healers: An Eight Stage Healing Process for Family and Friends of the Mentally Ill
by Julie T. Johnson. Publisher: P E M A Pubns Inc; 2nd edition (July 1994) ISBN: 0964043009

Just as this group was getting off the ground, coincidentally, two other groups contacted NAMI North Carolina wanting information on how to start an affiliate in Catawba County.

So far, the consumers have formed the advocacy group, and the families are working on a support group and a Family-to-Family Education Course, tentatively scheduled for January, 2004.

In August, NAMI Catawba announced itself with an ad for Mental Illness Awareness Week in the local newspaper.

Congratulations, NAMI Catawba

“In times of stress and anxiety, I ran away.” She spent the past 16 years dealing with this illness and hoping for a proper diagnosis. Only after several hospitalizations and lost jobs, she was diagnosed with bipolar disorder. The cost of this lengthy illness was loss of freedom and friends, financial strain and lost time from work.

“After every relapse, I had to start over, and recovery took longer with each episode.” Over time, she has learned to set boundaries, identify triggers that can cause a relapse and eliminate any negative self-talk. Sarah also spoke of NAMI and its role in helping her with her recovery.

On October 23, NAMI Rowan will collaborate with the Rowan Mental Health Association on another event. Author Virginia Holman will speak about her book Rescuing Patty Hurst.

We‘re gearing up for Mental Illness Awareness Night. We’ll be meeting at Sanctuary House for our “second year” and aren’t we proud to meet there! What has NAMI Guilford County done to promote awareness of Mental Illness?

We’ve started a Young Families program to help parents of young children cope with mental illness in their children and provide resources. The Law Enforcement Education program is expanding to work with other departments. The Outreach Program supplies informational brochures to libraries and medical institutions.

What are you doing as a NAMI member? How about

during the first week of October you seek out a person who needs help dealing with mental illness in their family or help a consumer with their current need. If we all help just one person we’ll have helped 135 people. Wouldn’t that be a proud achievement for our affiliate!

I’ll see you at Sanctuary House, October 6, to celebrate Mental Illness Awareness Day. I can’t wait to hear how you helped a consumer or family member!

Stephanie also speaks to Family-to-Family classes, churches, women’s groups, Wake County Women’s Extension, conferences and classes at the NC School of Social Work. She spoke at a Derek’s Renaissance House (a clubhouse started by NAMI Wake County) fundraiser in September.

She estimates that she has spoken to more than 80 groups in the last three years.

Stephanie says, “I truly believe that the biggest obstacle that people with mental illness face is stigma, and the most important thing I can do to eradicate that is to talk about my personal experience with bipolar disorder and mental illness in general, to put a human face on a very much misunderstood disease.”

Mike Brooks, Director of Real Life, a community television program reporting on Wake County Community Services, will interview Stephanie about her hospital experience and follow her as she does speaking engagements. The show will probably air early in November.

With bipolar disorder, adults seem to experience abnormally intense moods for weeks or months at a time, but children with bipolar disorder appear to experience such rapid shifts of mood that they commonly cycle many times within the day. This cycling pattern is called ultra-ultra rapid or ultradian cycling and it is most often associated with low arousal states in the mornings (these children find it almost impossible to get up in the morning) followed by afternoons and evenings of increased energy.

It is not uncommon for the first episode of early-onset disorder to be a depressive one. But as clinical investigators have followed the course of the disorder in children, they have reported a significant rate of transition from depression into bipolar mood state.

We all know that several things are happening at once. The state hospitals are going to drastically reduce their patient loads, and at the same time, money is continually cut to county services. One of the solutions to not leaving consumers stranded might be in recovery-based self-help.

Wake County is providing a special friend for long term patients who are about to be released from the hospital. The program started in New York State and is called Peer Bridgers. A consumer who has been previously hospitalized, but maintained a certain stability and who has been trained will provide mentorship, friendship, and a strength-based sense of “having been there” to a long term patient currently in the hospital, but scheduled for release in a few months.

The role of a peer bridger is to offer a trusting relationship with an equal, offer a sense of hope and self-esteem, to be a confidante, to be an ally (not an agent of the hospital or the mental health center), to offer support, to be a role model and to be an advocate.

The peer bridgers would either connect with an existing support group or create one and attend along with the patient for some time. They would also help the patient cope and learn new skills for community life.

Peer bridgers emphasize self-determination. They are not social workers, but do help the patient find resources, such as vocational training.

Typical peer bridger involvement is:

First 2–3 months: Relationship building, encouragement for recovery

Second 2-3 months: Attend support meetings with patient

Last 2-3 months: Post-discharge support, skill teaching

On going: Continue to attend same support group, maintaining contact

Peer bridgers are trained to develop skills in dealing with hospital personnel, community support programs and especially in dealing with other consumers.

Peer relationships have been proven in studies to assist consumers with real recovery. The peer bridger program, in particular, has gathered data to prove its efficacy.

Clippings will offer a follow-up on how the Wake County Peer Bridgers program which has been contracted with Community Partnerships, Inc. is doing. If you have questions, contact www.nyaprs.org.

One of the keystones of the current mental health reform effort in North Carolina is a specific requirement that consumers and their family members be involved in planning, advising and consultation to devise the service program in each locale. The reform legislation further stipulates that consumer and family involvement shall extend to participation in the quality assurance/quality improvement processes of each program. The vehicle for this activity is the CFAC —Consumer and Family Advisory Committee. There’s a CFAC for each of the area programs in the state…

I quote here from two of the NAMI North Carolina Technical Assistance Bulletins that address consumer and family activities: “National mental health advocates, including NAMI, believe that a strong consumer and family voice is critical in any mental health care system. This includes not only high levels of consumer and family participation in planning, assessment, and management activities, but also that the input of consumers and families is listened to and acted upon in ways that improve the mental health system...In other words, it is not enough for consumers and families simply to be there. Consumers and families must be allowed to participate and their input must result in changes to the mental health system so that it better meets their needs.”

The Durham CFAC has met more than 20 times since its formation in July of 2002. Even now this group is still inventing itself. Two of the tasks the CFAC must deal with in the very near future are 1) devising a set of bylaws and 2) some serious decision-making on the composition of our group. There are a number of considerations in who will serve on this committee in the long run:

For years, consumers and family members have struggled to be heard in the mental health services system. Now that the door has opened wide for us, we must not fail to do our part to make the system work best to serve the needs that we see every day. ..I hope that you’ll give some serious thought to getting involved with mental health work in (your local) CFAC.

Note: For more information on the CFAC in your area, or if you are on a CFAC and want to share your experience, email us at mail@naminc.org, or call 1-800-451-9682.

Alone. Afraid. Lost. Confused. Where is home? What happened to my friends? Good iced tea. Good cornbread. Good individual and group therapy discussions. Fun treasure hunt road trips, challenging card and board games with each other. Bonding and true empathy of each other's struggles were the norm. Even though I was on "the inside" for 1 week, these people seemed to be able to see past my illness right into my soul. No punches were pulled here. Nonjudgmental. Contraband Double Bubble shared.

Where have my friends gone? One by one, they left the unit to go back into "their worlds."

Where are their worlds? Are they going back to their spouses, girlfriends/boyfriends, clubhouses, on the way to jail, back into the hospital or nowhere?

All of these are feelings and thoughts that ran through my mind once I was released from the "Lower Level" of the "Psychiatric Unit." Patients were thrown out to fend for themselves as quickly as they arrived. There was no support from the hospital staff and consumers had to wait weeks sometimes just to get a follow-up appointment. Some were not able to pay for much needed medicine or had just begun the "red tape roulette" of social service benefits. Those who had to wait awhile seemed to slip through the cracks.

Not knowing who to turn to, some of the mental health consumers became homeless or joined the ranks of suicide victims, committed crimes or ended up in jail. Some consumers found support and love from family and friends who sought to find out about their loved ones’ illnesses. While others, including myself, began the informational journey towards recovery.

People with physical illnesses are not stigmatized. Why are the mentally ill treated any differently? Why are there no road maps or directions towards recovery immediately following a psychiatric hospitalization?

Who can answer these questions? Please step forward. Answers and help are long overdue!

I am one of the lucky ones. NAMI saved my life!!

Paul and Marcia Garatt, were recognized at this year’s NAMI national convention, as among those who taught the most Family-to-Family classes. Since they started teaching in 1999, they have taught 13 classes in 5 locations, graduating 211 students. As a team, they taught 10% of all our graduates between 1999 and 2002. (From 1996-2003, 2057 students in 141 classes graduated.) In addition, they were part of a pilot program, based on the Family-to-Family Course, that trained mental health providers within the area programs.

The Garatts exemplify the grassroots nature of NAMI. We know wherever they go, they will make a tremendous impact on the thousands of new friends they will make.

As they move to Kentucky to be closer to family, we wish them well.

Disproportionate numbers of African Americans are represented in the most vulnerable segments of the population—people who are homeless, incarcerated, in the child welfare system, victims of trauma—all populations with increased risks for mental disorders.

As many as 40 percent of Hispanic Americans report limited English-language proficiency. Because few mental health care providers themselves are Spanish-speaking, most Hispanic Americans have limited access to ethnically or linguistically similar providers.

The suicide rate among American Indians/Alaska Natives is 50% higher than the national rate; rates of co-occurring mental illness and substance abuse (especially alcohol) are also higher among youth and adults in this group. Because few data have been collected, the full nature, extent, and sources of these disparities remains a matter of conjecture.

Asian-Americans/Pacific Islanders who seek care for a mental illness often present with more severe illnesses than do other racial or ethnic groups. This, in part, suggests that stigma and shame are critical deterrents to service utilization. It is also possible that mental illnesses may be undiagnosed because they are expressed in symptoms of a physical nature.