Reforming North Carolina’s Public System of Care

NAMI North Carolina’s Fall Institute on Saturday, October 23 at Wayne Community College in Goldsboro promises attendees a look into the future at the public mental health system.

The Institute, Redesigning the Future: Reforming the Public System of Care, features Dr. Stephen Preas, talking about cost-effective ways to spend mental health treatment dollars; Marti Knisley of The Technical Assistance Collaborative, who will provide a review of reform efforts in other states; State Auditor Ralph Campbell, with an overview and status report on the hospital and area mental health program study; and Flo Stein, chair of the Design Team effort, speaking on the problem of inadequate resources for providing care to seriously disabled people in North Carolina.

Afternoon workshops include: Monitoring or serving on area boards, by Scott Bryant-Comstock and Allan Spader; Establishing or serving on human rights committees, presented by Lisa Haire and Judy Burke; Building relationships with public officials by Beth Melcher; and Current initiatives being taken by the Division of MH/DD/SAS, and paths for involvement and input by consumers and their families by Tara Larson.

A limited number of scholarships to the Institute are available. Call the state office at (800) 451-9682 for information regarding scholarships.

Come, join us for a day in Goldsboro and learn about the future of North Carolina’s public system and how you can be an influence.

Family-to-Family Reaches Out to New Areas

 On September 10-12, Family-to-Family expanded its reservoir of teachers into five new locations in North Carolina as it graduated another fantastic class of new teachers of the education course.

Florence and John Rowe, Family-to-Family Trainers, said that what distinguished this group of individuals from other groups is that there were so many family members who were also professionals. Among the new teachers are a police officer in the prison system, several mental health professionals from area programs and a state hospital, and a crisis team member for people with dual diagnoses. In addition, a businesswoman and a computer engineer completed the training. Diversity in occupation was not the only hallmark of this group of trainees. There were parents of young children with psychiatric disorders, adult children of persons with brain disorders, and a couple of siblings.

A few openings are left for those who want to teach the Family-to-Family Education course in another training session scheduled for November 12-14. Again, the training will be held in Raleigh.

Please call Beth Greb at the state office if you are interested in teaching Family-to-Family.

 NAMI North Carolina is in the midst of its Annual Campaign, which consists of individual gifts secured through direct mail and personal solicitations.

An ambitious individual giving goal of $160,984 has been set for this year. This amount helps NAMI North Carolina meet a budget totaling more than $632,401. Our goal is achievable if NAMI North Carolina has positive responses by donors and volunteers.

In addition to individual giving, NAMI North Carolina depends on corporate gifts, foundation grants and affiliate donations to meet its program budgetary needs. During the current fiscal year, NAMI North Carolina needs to raise the following amounts to fund our programs:

Education/Conferences $ 58,709

Adult Services/Advocacy $ 48,460

Young Families $123,240

Family-to-Family $106,924

We are depending on your support this year. NAMI North Carolina cannot continue to provide enhanced program services for persons with mental illness and their families and friends without your generous support. Please consider a generous gift this year.

Farewell to Martha...

Martha Brock, our Membership Secretary, has left NAMI North Carolina to seek full-time employment.

Martha’s work dealt mostly with memberships, but she was a life-saver in answering the telephones and lending a hand to complete projects in the state office.

We miss Martha and wish her the best, and hope she will continue her efforts on behalf of persons with mental illness.

From the President...

The mood and the messages still appear mixed on the future of the public system of care for those with mental illnesses, developmental disabilities and substance abuse. This continues to be a prime concern for NAMI North Carolina. The study commissioned by the legislature, to be carried out under the auspices of State Auditor Ralph Campbell, is ongoing. It is intended to complement and round out the previous study of the four state hospitals. At present the community programs and the hospitals have separate funding and the temptation to shift ill people back and forth between the two systems for budget reasons rather than treatment reasons is a constant issue. The hope is that when the hospital study and community study are completed and the parts are examined, that a logical, coherent system of care will begin to emerge.

The Design Team was constituted to devise a new plan for providing the public system of care. This initiative was organized under the auspices of the Department of Health and Human Services through its Division of Mental Health, Developmental Disabilities and Substance Abuse. In addition to Division staff, there was representation from the advocacy community as well as the area programs. This effort was off to a good start and appeared promising, but its work has been slowed and now the times for completing certain portions of the work have been extended.

The slow down in the Design Team work has been due in part to the decision by the Secretary of the Department of Health and Human Services, Dr. Bruton, to allow Mecklenburg County to proceed with planning for a separate managed care pilot program. The Mecklenburg effort has, to a degree, required staff support thereby reducing what is available for other efforts. The implications for the remainder of the public system of allowing one large, metropolitan county to go it alone, are far reaching and the impact on smaller, more rural area programs has not been fully considered.

The program for the Fall Institute on October 23 at Wayne Community College in Goldsboro, will focus on redesigning the North Carolina mental health system. I urge you to attend. It is important for all of us who have a stake in this system to gain understanding of what the future holds.

Several NAMI North Carolina affiliates have sponsored Parity in Compassion: Religious Communities and Ministry to Persons with Mental Illness and Their Families, a one-day workshop designed to introduce leaders from religious communitites to the needs of people who suffer from neurobiological brain disorders and their families. The workshop also identifies and affirms the resources present within a community to help meet those needs.

In addition to an overview of mental illness as a major public health issue and unmet challenge to the compassion of religious communities, participants are given an introduction to symptoms, causes and treatment, with particular attention to severe and persistent mood and thought disorders; the impact of mental illness upon the family; identification of stereotypes and the stigma and discrimination these produce; and discussion of congregational and clerical resources already in place to provide support and advocacy for those who have a mental illness and the members of their family.

In addition to those sponsored by local NAMI affiliates, workshops have been held for the Statesville and Durham districts of the United Methodist Church, the North Carolina Synod of the Evangelical Lutheran Church, the Clinical Pastoral Education program of Moore County Hospital, and the Duke University School Convocation and Pastor’s School. The workshop is an approved option for study offered through the Duke University Divinity School Office for Continuing Education.

In communities where Parity in Compassion is held, the local community mental health center is invited to participate by sending a representative to describe resources available through that agency. NAMI NC’s mission and services are outlined as well and specific religious issues are addressed as they arise. Questions and discussion are encouraged throughout the day.

Sponsoring NAMI affiliates arrange for a meeting place, provide a light lunch, bear the responsibility for publicity, and contact the local mental health center to arrange for representation. If you have questions, or if your affiliate would like to sponsor this important workshop, please call the NAMI NC state office, or speak directly the primary presenter, Bob McClernon at (919) 477-7278.

NAMI North Carolina and its local affiliates are gearing up for our 2000 membership renewal drive.

Renewal information and affiliate membership rosters were mailed to treasurers of all affiliates in September. We have requested that completed forms and dues be returned to the state office by December 1, 1999. Current 1999 memberships expire with NAMI on January 31, 2000, but some lead time is required for data entry at the state office prior to sending the forms to NAMI.

Please renew your affiliate membership early. Contact your affiliate officers to learn of the renewal procedure for your affiliate.

The Division of Facility Services is a division of the Department of Health and Human Resources. Questions or concerns about a Family Care Home, an Adult Care Home or an Assisted Living Residence should be made to this Division at (800)624-3004 or the Division may be reached through the CareLine at (800)662-7030. Be aware, however, that this line is very busy.

Two Sections within the Facility Services Division are as follows:

The Group Care Licensure Section of the Division licenses and regulates adult care homes and provides supervision, and consultation. It also provides training and technical assistance to county departments of social services staff who regularly monitor the compliance status of the facilities in terms of rules and quality services. Training and other support services are provided to facility staff to enhance their ability to meet the needs of mental health treatment facilities to assure compliance with rules and that client needs are appropriately met. The Group Care Licensure Section telephone number is (919)733-6650.

The Licensure and Certification Section conducts surveys and complaint investigations in health care facilities and agencies.It also manages and directs administrative services and quality assurance to ensure compliance with federal regulations forMedicare/Medicaid certification. This section conducts staff development programs for surveyors to meet Health CareFinancing Administration (HCFA) requirements. The Licensure and Certification Section can be reached at (919)733-7461.

The following definitions are used to categorize facilities:

"Assisted living residence" is any group housing and services program for two or more unrelated adults, by whatever name it is called, that makes available, at a minimum, one meal a day and housekeeping services and provides personal care services directly or through a formal written agreement with one or more licensed home care or hospice agencies. The Department may allow nursing service exceptions on a case-by-case basis. Settings in which services are delivered may include self-contained apartment units or single or shared room units with private or area baths. Assisted living residences are to be distinguished from nursing homes subject to provisions of G.S. 131E-102. Effective October 1, 1995, there are two types of assisted living residences: adult care homes and group homes for developmentally disabled adults. Effective July 1, 1996, there is a third type, multi-unit assisted housing with services.

"Adult care home" is an assisted living residence in which the housing management provides 24-hour scheduled and unscheduled personal care services to two or more residents, either directly or, for scheduled needs, through formal written agreement with licensed home care or hospice agencies. Some licensed adult care homes provide supervision to persons with cognitive impairments whose decisions, if made independently, may jeopardize the safety or well-being of themselves or others and therefore require supervision. Medication in an adult care home may be administered by designated, trained staff. Adult care homes that provide care to two to six unrelated residents are commonly called family care homes. Adult care homes and family care homes are subject to licensure by the Division of Facility Services.

"Family care home" means an adult care home having two to six residents. The structure of a family care home may be no more than two stories high and none of the aged or physically disabled persons being served there may be housed in the upper story without provision for two direct exterior ground-level accesses to the upper story.

Rockefeller University Study

The Laboratory of Human Neurogenetics at Rockefeller University in New York is currently investigating the genetics of schizophrenia. The cause of schizophrenia is complex and may involve different genetic and environmental factors.

The current study requires a small amount of blood from individuals with a diagnosis of schizophrenia or schizoaffective disorder. This is a genetic/family study and it involves participation of the diagnosed individual as well as both biological parents. If parents are not available, a sibling who also has schizophrenia or schizoaffective disorder can be included.

Each individual study participant (the person with schizophrenia as well as the biological parents) must agree to give a blood sample and complete a telephone interview with a study clinician. There is no cost to participate and the university will cover the costs of the blood draw and shipping charges. Blood samples can be obtained by a lab or physician convenient to the participants. Travel is not required, and the participants with schizophrenia will receive a payment of $50. Confidentiality is ensured.

For more information, call Annamae Conry, RN, CNS, NP, toll-free, at (888)920-9100, then press #5, or e-mail conrya@rockvax.rockefeller.edu. The website address is www.rockefeller.edu.

Researchers at the University of North Carolina at Chapel Hill have begun a new initiative to identify and develop possible treatments for people who are at high risk for schizophrenia. Scientists hope that their studies could shed light on factors that may cause schizophrenia and lead to the development of strategies that could prevent schizophrenia from developing in vulnerable persons.

Schizophrenia typically begins in late adolescence or early adulthood. The disorder manifests itself through mental and behavioral symptoms, such as delusions and hallucinations, the scrambling of thoughts, and the erosion of cognitive functions. Both genetic and environmental factors are thought to interact to cause schizophrenia.

About 1 in 100 Americans suffers from schizophrenia, including 70,000 North Carolinians. "That’s a substantial number," said Dr. Jeffrey Lieberman, Vice Chairman of the UNC-CH Dept. of Psychiatry and Director of the University’s Mental Health Clinical Research Center. "It’s not an uncommon disease. And the illness, once it begins, can be treated."

Before a person develops the psychosis of schizophrenia, there is usually a period when subtle changes in thinking, mood, and perception are experienced. Called "prodromal" or "basic" symptoms, these may be confusing and worrisome, and sometimes interfere with the person’s ability to study, work, make friends and be with others comfortably.

Examples of basic symptoms include:

Þ Misperceiving sounds, smells, or things seen. A person may perceive a dog barking or the hum of a fan to be someone speaking, may think that they are emitting a foul body odor, or see people or objects in trees or the sky that are not really there.

Þ Noticing frequent, perplexing coincidences. A person may notice things in the environment that others don’t notice, begin to make connections between unrelated events, report clairvoyant or frequent deja vu experiences. For example, a person may find that a particular color or number keeps coming up in many otherwise unrelated circumstances, and then think that this has a special meaning in his/her life.

Þ Thinking that others are taking extra notice, talking, or laughing. For example, a person may have the feeling that people in a group are laughing or making fun of them, even though they realize this is probably not true.

Þ Suspiciousness. A person may suspect that others are conspiring against, harassing, persecuting, cheating, or trying to harm him/her in some way. A person may start to complain that others "have it out" for him/her, or are "trying to get back" at him/her.

Þ Trouble thinking or concentrating. A person may experience trouble keeping his/her thoughts together, jumping from one thought to another, confused thinking, or problems with distraction, for example, "noticing every little thing."

The UNC PRIME Research Clinic (PRIME stands for Prevention through Risk Identification, Management, and Education) targets adolescents and young adults who are experiencing basic symptoms. The goal of the program is to help these individuals cope with their symptoms, to continue their lives normally and to achieve their personal goals.

Research projects aim to evaluate risk factors to predict who will develop psychosis, and to determine if a medication is helpful in treating these non-specific symptoms and in preventing development of psychosis.

By unveiling identification markers that could prove to be schizophrenia predictors, researchers could eventually develop a screening strategy for the general population that would help identify persons at high risk for schizophrenia, before symptoms emerge. With early identification, treatment can begin early and significantly enhance the odds of a full recovery.

"What excites me about this research initiative is the hope that our studies could lead to strategies that could prevent someone from developing schizophrenia

and suffering from the frightening and disabling effects of the illness," said Dr. Diana Perkins, Associate Professor of Psychiatry and director of the PRIME Research Clinic.

Lieberman said that it now takes the average individual with schizophrenia about a year to obtain appropriate treatment. "This is probably due to ignorance about mental illness and a lack of opportunities for treatment." This is despite the fact that research conducted a decade ago demonstrated to Lieberman and his colleagues that schizophrenia is a degenerative illness. As with other illnesses such as cancer and heart disease, the longer the symptoms are untreated, the more difficult it is to treat the illness and the less likely that the patient can recover. Dr. Lieberman states, "It is important to identify people vulnerable to schizophrenia at the earliest point to best ensure treatment that leads to the fullest recovery possible."

To learn more about basic symptoms and the early warning signs of schizophrenia, call Janet or Jennifer at (877)774-6319 or e-mail PRIME@css.unc.edu

Calendar of Upcoming Activities...

 October 3-9 Mental Illness Awareness Week. A great opportunity to educate your community about mental illness. Be a part of your affiliate activities for this year’s MIA Week!

May 12-13, 2000 NAMI North Carolina’s Spring Conference in Winston-Salem. Reserve the date.