State Auditor Presents Report to Legislators

The greatly anticipated "Study of State Psychiatric Hospitals and Area Mental Health Programs" completed by State Auditor Ralph Campbell was released March 31st and presented to the Legislative Study Commission on Mental Health, Developmental Disabilities, and Substance Abuse Services on April 11th. The exhaustive 420 page report details problems as well as potential solutions.

"The Auditor and his consultants have done a marvelous job of documenting the complex problems facing the system," says Beth Melcher, NAMI North Carolina’s Director of Government Relations. "NAMI members should take heart that they have been heard and in this report their concerns have been placed squarely in front of the General Assembly."

To respond to the problems, the report details over 50 recommendations, some of which are controversial, some of which need further work and analysis. Fundamentally, the recommendations seek to clarify roles and responsibilities between the state and local county governments regarding mental health services and to refocus resources toward community based services.

Included are recommendations:

• For the state to establish criteria for services, quality standards, fiscal soundness, and monitoring and to contract with county governments or groups of county governments to provide the services. The basis for this recommendation is that services provided locally should be managed locally and not by the state.

• Reconstitute Area Boards to be primarily management boards with citizen input regarding services occurring through advisory committees directly to county commissioners.

• Reduce hospital beds by 667 over a five-year period. Funds saved would be directed toward developing community services. The state hospitals would focus programs and care on long-term care and intermediate/rehabilitative care. The recommendation emphasizes that no one should be moved out of hospitals until services are in place.

• Close Dorothea Dix Hospital in Raleigh as a way to reduce beds and add additional beds to the other facilities.

• Offer an acute mental health care benefit to all North Carolinians including assessment, medication management, and acute hospitalization. Target populations such as children, severe and persistent mentally ill, and geriatric would receive additional benefits and services targeted to their needs. As yet these additional benefits have not been defined.

Response from legislators has been positive. Most major advocacy organizations have pledged to continue to work with the legislature and State Auditor to continue to refine and develop the proposal.

"The system of care is at a crisis point and action must be taken," says NAMI North Carolina President Eileen Silber. "The Auditor's report has support and momentum. While we may not agree with everything, we must take advantage of this opportunity and work with the General Assembly to ensure that the needs of children and adults are dealt with responsibly."

The report calls for the establishment of a blue ribbon commission to provide oversight for continued work, supporting legislation, and implementation. This commission will provide an avenue to raise needs and issues of concern to individuals with mental illness and their families.

Want to read the report yourself? Copies are available online at www.osa.state.nc.us or call the auditor's office at (919) 807-7500.

The General Assembly will convene in Raleigh beginning on May 8th for its "short" session which is expected to last several months. The short session focuses on making adjustments to the budget, completing action on bills left over from the long session, and considering recommendations from study committees that have been meeting over the past several months. What can we expect?

Budget wise things look grim. A combination of factors has resulted in an estimated budget shortfall of over $400 million. While it will be very difficult to get large sums of money, there is hope that some funds will be directed toward mental health to respond to recent negative publicity about the system. Coalition 2001 will request $74.5 million, a request based on the actual needs of the system, not what is politically expedient.

The Legislative Research Commission on Mental Health and Chemical Dependency Parity completed a report and proposed legislation. Look for this legislation to be introduced in the House and Senate. Opposition from business and insurance interests continues. Support for parity was given a boost, however, when the State Auditor's report strongly recommended adoption of parity legislation.

The Legislative Study Commission on Mental Health, Developmental Disabilities and Substance Abuse Services will likely propose the following:

• Establishment of a legislative oversight commission to continue work on the recommendations from the auditor's report and develop legislation for consideration in January 2001. This proposal should have strong support.

• Legislation to regulate the use of seclusion and restraint in facilities as well as require the reporting of deaths in those facilities. While many legislators are very supportive, hospitals and some other providers may seek to be exempted from the bill. We will have to watch this bill very carefully. Advocacy may be needed during the session. Stay tuned.

Still under consideration are proposals related to housing, system funding, and client advocacy. Action on these items will be determined by the end of April.

One of the recommendations in the far-reaching report on state psychiatric hospitals and area mental health programs is the call for parity. Plain and simple, this is insurance coverage of severe brain illnesses to the same degree as any other illness. The authors of the report see this as a critical part of the larger financial plan and NAMI North Carolina has worked diligently to achieve this in past legislative sessions.

Equitable medical insurance is now a necessity. Medical research has clearly demonstrated the biological and physical basis of severe and persistent mental illnesses such as schizophrenia and bipolar disease.

There is also clear and convincing research that shows treatment is effective. Why, then, is insurance coverage so difficult to obtain and, when available, so severely limited? There are current actuarial data using a managed-care model that show any increase in cost at all to be negligible. And yet the myth about the high cost of coverage for businesses seems to persist.

A piece of legislation will be introduced this spring in the North Carolina General Assembly to enact parity of insurance coverage. So far, the insurance industry and its allies have prevented previous parity measures from reaching the House floor for a vote.

An increasing number of people, both adults and children, are receiving their treatment in the public system because they couldn't get private insurance in the first place or their very limited benefits have run out. At a time when the demands on local programs are increasing, the state and local funding for these programs is decreasing. Sick people need adequate and appropriate care. Families and good professionals know that severe mental illnesses are real physical diseases of the brain; that treatment works—-if you can get it; and that discrimination is wrong.

The message is clear. People who are ill need treatment. Families need to be able to buy insurance or, if not, then to have a public system of care that is adequately funded. It’s really very simple.

Elsewhere in this issue of Clippings and in many affiliate meetings across the state, the importance of NAMI North Carolina’s advocacy role is clearly in evidence.

Our Director of Government Relations, Beth Melcher, is the leader of the coalition of advocacy organizations working with the General Assembly and the executive branch on a new report from the State Auditor proposing wholesale reform of the public mental health system … on new laws protecting patients subject to seclusion or physical restraints in hospitals and other residential settings … on the programs to be made available in long-term care facilities.

We are all proud of Beth and proud of NAMI North Carolina. The voice of the consumer and the family member is being heard.

Your financial contributions to NAMI North Carolina are making this possible. Although we have an application to support our advocacy program pending with a foundation, we haven’t heard that we’ll get that money. But our advocacy efforts are so important, we’re devoting all of Beth’s attention to it nonetheless. We can do this only because our contributors have been so supportive in the past.

We’re counting on your support to continue. Advocacy has never been more important, at this turning point in North Carolina’s history.

Thank you for being so generous.

Changes in Depression Treatments Produce Better Results

It is widely known that only 25% to 35% of people with depression get good care, in spite of the availability of effective treatments. The World Health Organization’s report on the global burden on disease expects depression to become the second leading cause of disability worldwide in the coming decade, emphasizing the need for better access to effective treatments. The problem has been to find ways to improve the recognition and treatment of depression—and thus improve patient outcomes.

In a study conducted by Dr. Kenneth Wells of the RAND Corporation and reported in the January 12, 2000 issue of Journal of the American Medical Association, 27,000 patients in a wide range of primary care settings across the country were screened for depression. More than 1300 patients with depression were identified. Some clinics were assigned to treat these patients as they usually would, while other clinics were asked to form teams to train other staff and to identify, treat, and monitor patients.

Interestingly, although these teams received training in working collaboratively and in helping other staff identify and treat patients, there were no specific treatment protocols. Instead, sites with research groups chose to change the way they provide services in a variety of ways, including educating staff about the treatment of depression, offering on-site rather than off-site counseling, having a nurse monitor treatment compliance and eliminating copayments for visits.

These simple and relatively inexpensive interventions—-screening, changing the way care was provided in the clinic, and modest increasing resources to educate patients and staff-—had substantial effects. Rates of counseling and appropriate use of medications increased by 30%, recovery rates improved significantly, patients’ quality of life improved, and more patients remained on the job.

The Wall Street Journal reported on the study in January, reminding us of the progress being made both in destigmatizing depression and in making the business community aware of the impact of depression on its employees and the availability of effective treatments.

Programs for Depression in Managed Primary Care, can be accessed on the web at http://uu-www128.edoc.com/issues/v283n2/full/joc90425.html

• "Turning Promise into Practice" is this year’s NAMI Annual Convention, scheduled for June 14-18 in San Diego, California. Attendees from North Carolina will caucus together at 6:00 p.m. on Thursday, June 15^th, in a hotel meeting room. As in years past, the caucus will likely lead to dinner together that evening. If you’re attending the NAMI Convention, be on the look-out for your fellow North Carolinian!

• Research participants are needed for two studies, on bipolar disorder and on obsessive-compulsive disorder, being conducted by the National Institute of Mental Health (part of the U.S. Dept. of Health and Human Services). The studies are attempting to identify genetic causes of these illnesses, and participants will be providing a blood sample, a phone interview, and a written questionnaire. If you’re interested in the bipolar disorder study, call Ms. Maxwell collect at (301) 496-8977. Those interested in the obsessive-compulsive disorder study should call Mr. Gause collect at (301) 496-3421.

A Journey into My Father's Struggle with Madness

by Nathaniel Lachenmeyer

Charles William Lachenmeyer, PhD, died in a small apartment in Burlington, Vermont in 1995. His only son, Nathaniel, had not seen him in years, and after Charles's death, Nathaniel learned that his father had been homeless for a year, then hospitalized involuntarily and died within months of his release. Nathaniel made it his mission to find out about his father's life during the years since his parents divorced when he was 11 years old.

The book is written on two levels. The first is the evolution of Nathaniel's understanding of his father and his own struggle to overcome his loss and his guilt for divorcing himself from his father's life when he was a teenager. The second is an effort to understand the thinking of a person who has schizophrenia.

The book powerfully puts us into the mind of Charles Lachenmeyer, through his own writing and the insight provided by his acquaintances during his years away from home. At one point in the book Nathaniel moves from describing what other people had to say about Charles, to describing how Charles would have interpreted those interactions.

Nathaniel leaves us with the inspiring words of his father, "There is never any reason to give up." Charles found the courage to continue looking for employment and to write a book about his life despite his homelessness and incarceration in a psychiatric hospital for an illness he did not believe he had.

Nathaniel finishes his father's book for him as a tribute to his optimistic spirit. He reminds us, however, that the book is written from Nathaniel's reality point of view, not his father's, because Nathaniel believes his father did have schizophrenia.

A Vital Link Between Parents and School Staff

by Diane Palmer, R.N.C.

The health care management of children with mental illness in the school setting presents numerous challenges to the school nurse. The diagnosis alone carries isolation for the child and family. School staff is usually fearful and in need of education. The management encompasses not only the complexities of the children’s special emotional, physical and social needs, but also the coping abilities of the school staff, student, parents and classmates. Very often the child with mental illness has experienced failure and isolation at school. Successes have not been part of their school experience.

School nurses can provide a wealth of valuable services to the families and school staff through education that will help dispel

myths and stigma connected to mental illness. They are in a position to reinforce the knowledge that the illness is treatable. Researching education that is factual and truthful will not only assist the nurse in self education, but will help prepare her for the responsibilities of meeting the many needs of these special students. Many times these needs can be unclear, uncertain and overwhelming.

Families very often will turn to the school nurse for information, assistance, comfort and support. Teachers and staff report the school nurse is the person they most prefer to provide them with health related information regarding a child in their classroom with a health problem. Lastly a student with a mental illness who may be struggling with medication side effects may require frequent assessment and support.

Juggling all these needs can indeed be overwhelming. The following suggestions may help the school nurse in meeting and solving these challenges.

--Research and educate yourself on medications, side effects, newest research, treatments and resources available.

--Develop a resource file of updated information for teachers, parents and students.

--Plan and hold a staff development program in your schools on mental illness in children or be prepared to provide information in small group settings.

--Continuously update information on medications and side effects.

--Ongoing assessment of the student’s academic progress is essential to determine the impact of the illness on the child’s educational performance. A student may experience academic difficulties due to absences, medications and their side effects and emotional problems. They may also require special educational services under the Other Health Impaired category. A nursing care plan could be required for the student’s IEP if there is a service delivery for the student by the school nurse. Some of the signs the nurse should alert the teacher for include attention and concentration problems, slower rate of processing information and performing school work, organizational problems, poor social relations with peers and declining performance in school.

--Work collaboratively with the student, parents and support staff to keep stress and upheaval of emotional, physical or educational setbacks to a minimum. Plan proactively before a crisis occurs.

--Develop a plan to include teachers and the student in some of the educational planning process.

All too often the student is not included in any planning. This could be a lost opportunity for input identifying strategies that might help in the achievement of self-esteem and success.

Working closely with parents and the school staff, the school nurse can become a major advocate for the child with a mental illness. Open communications and support for parents combined with information for teachers will increase the comfort level of everyone to overcome obstacles to a positive successful school experience for the student.

Young Families

As promised in an earlier newsletter, here are some guidelines to being a good listener that others have found useful. These ideas remind us just how unique this role is that you play in the lives of others.

• Avoid giving advice. If asked for advice, try suggesting options instead with empowering the parent as your main objective.
• Imagine yourself in the young parent’s role and think of how you would feel and act in his/her situation.
• Remember there is no one right or wrong way. Refrain from making judgments.
• Practice active listening — listening closely and letting the other person know you understand what he is saying. Listen to the feelings being conveyed.
• Remember the different stages of grief (anger, denial, etc.) and that grief is an ongoing cycle that parents experience at various times in their lives. It is especially important not to try to move a parent out of a stage of grief or to get a parent to face his denial. As time passes and parents learn more, they work out of denial but being in denial may serve as a time to gain strength and endurance.
• Be open minded and never critical. Recognize that in this big world there is room for a wide variety of feelings and reactions. We all have to work through situations in our own unique way. Acknowledge their feelings. Probably the most common reaction from young parents is anger. At the root of this anger are feelings of helplessness and loss of the dream, of the child they expected in their lives. Try not to take this anger personally and remember this too shall pass.
• Believe that these young parents will work through situations and find solutions. As a listener, you are there mainly for support.
• Be patient, not in a hurry. We all progress at different speeds.
• Listen closely, of course. Therefore, do not think ahead of what your response will be as the parent talks. Just listen. Remember how helpful it was for you to have someone listen.
• Experience matters! And once again, there is your own ability to endure, the fact that you survived and life goes on. You accept your children as they are and are proud of their accomplishments no matter how small. You can be a most important role model.

Thank you! Something we may not say often enough. Thank you for your willingness to help young families by listening and offering such crucial support!

Virginia Morton has been a member of NAMI North Carolina since 1986 when her son's therapist told her about a support group where she could meet and talk with other family members who would understand what her family was experiencing.

The next 13 years saw Virginia serve as Treasurer, Vice President and President of NAMI Rockingham County as well as affiliate contact and Helpline person. In fact, Virginia considers her greatest accomplishment to be the "many years answering the telephone and being available as the Helpline person... sometimes dealing with life and death situations at one extreme and just being there to simply listen at the other."

Virginia knew there was more work to be done than support only. The families she talked with needed advocacy, too, so she also has served on the Rockingham County Area Board for 10 years and has been Chair of that Board's Human Rights Committee since 1997.

Virginia's service to people with mental illness and their families did not end in Rockingham County. NAMI North Carolina has benefited from Virginia's two terms (seven years of service) on the Board of Directors. As she rotates off the Board this month, Virginia comments that she "highly recommends service on the NAMI North Carolina Board for all interested in developing their leadership skills and in keeping in touch with all the latest happenings locally and nationally."

While on the Board, Virginia served as Chair of the Bylaws Committee for several years, but most recently, she has been the Chair of the Membership Committee.

Beth Greb, NAMI North Carolina's Adult Services Coordinator, says that Virginia "has been tremendously helpful as a consultant and advisor in my efforts to support affiliates and increase membership at the affiliate as well as state level."

According to NAMI Rockingham County President Carol Matthieu, "Virginia represents all that we in NAMI would strive to be--a wonderful, personal contact for

anyone seeking support, information, help, and friendship."

Education has been another of Virginia's priorities as a NAMI North Carolina member. She served on the Education Committee of the NAMI North Carolina Board and was one of the first trained educators and support facilitators in the Family to Family program.

To address changing needs, Virginia believes that NAMI North Carolina "must come up with some other means of providing support other than at meetings. People have busy lives....maybe telephone support should be utilized more."

On the advocacy front, Virginia maintains that NAMI should continue to advocate for "appropriate treatment and services for all persons with serious and persistent mental illness."

With elections on the horizon, Virginia urges everyone "to become well informed about the issues and the candidates and exercise your right to vote!"

Virginia and her husband, Vince, moved to Greensboro last year where they are now members of NAMI Guilford County.

Pathways to Promise Brochures

Pathways to Promise is an interfaith technical assistance and resource center which offers liturgical and educational materials, program models, and networking information to promote a caring ministry with people with mental illness and their families. These resources are used by people at all levels of faith group structures from local congregations to regional and national staff.

When mental illness strikes a family member, a pastor can be instrumental in helping the family maintain a sense of perspective, equilibrium and connection. Often he/she can be a liaison between the family and those providing treatment and/or assist them in finding appropriate treatment and community services.

Clergy, in representing the faith community, represent a place where people know there is hope, forgiveness and acceptance. The pastor can remind every family member that each one of them matters to their faith community. A pastoral visit can reassure the family that one is remembered, prayed for, and cared for. This gives support to the person with mental illness and the family. The sharing of prayer, ritual, or a communal remembrance often speak of the stability and care of the faith community more profoundly than words. The importance of knowing that one belongs, is wanted, and is valued cannot be over emphasized.

Prayer, encouragement and information can be found in Pathways to Promise’s three brochures titled, When Mental Illness Strikes in a Family of Faith. The different brochures address the points of view of Protestant, Roman Catholic, and Jewish teachings about God and mental illness in the family. It might be noted that our very own John Baggett, former executive director of NAMI North Carolina, wrote the Protestant brochure.

You may order these brochures from Pathways to Promise, 5400 Arsenal Street, St. Louis, MO 63139; Fax, (314) 644-8834; E-mail, pathways@inlink.com

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A Note to Callers

The NAMI North Carolina staff meets each Monday at 9 a.m. All calls made to the state office during the staff meeting are routed to the voice mail system. Because the system can handle only a limited number of calls at any one time, some calls may go unanswered. We apologize for the inconvenience.

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NAMI Western Carolina

Grassroots Activities

Make a media splash. Invigorate your affiliate. Advertise NAMI and its mission. Educate your community about mental illness. NAMI Western Carolina did all that with a one-day event in March, a Legislative Forum on Mental Illness. Here is what was involved.

At the beginning of March, Nancy Carey and Nina Accardo organized a Legislative Committee. The ground rules were set for a non-partisan event (a requirement for non-profit legislative activity) and the committee "really did work as a unit. We made things happen by subcommittee," said Nancy. All decisions were shared.

There was a search committee to find a location, a decorations and food committee, publicity, invitations and speakers bureau committees. One member had connections with UNC Asheville, so that became the site. Previous meetings with legislators paved the way to the appearance of two state senators and two representatives. The panel of presenters held a meeting to discuss which topics should be covered and how to present them in the most effective way. Topics included crisis, restraint, death reporting, prisons, consumer and family inclusion, stigma, discrimination, Assertive Community Treatment (ACT), homelessness, gerontology, parity, and financial issues.

In less than a month, on March 27, 2000, NAMI Western Carolina produced an impressive event that drew 200 people and the attention of the local media. The Asheville Citizen-Times article described the "personal and often painful accounts" of the 16 speakers on the program that "brought tears to some in the crowded auditorium."

Much can be accomplished when an affiliate learns to work together as an organization. NAMI Western Carolina functioned as a well oiled machine of organization. Congratulations to them. If you want to follow their lead, call Nancy at (828) 675-5271.

On May 23, 2000 a public meeting will be held at 11:00 in the legislative auditorium to support HB 1396. This bill calls for an amendment to the state constitution to recognize the right to health care. Reps. Insko, Alexander, Wright, and Luebke are bill sponsors and numerous individuals and organizations, including NAMI North Carolina have endorsed the bill. For more information call the NC Committee to Defend Health Care at 919-402-0133.

June 14-18

NAMI Annual Convention in San Diego, CA. Mail-in registrations must be postmarked by June 1.

July 2-5

The 2000 Autism Society of America National Conference, Atlanta, GA. For information, call 1 (888) 684-4630, toll-free.