December 2001

State Plan on MH/DD/SA reform goes to DHHS Secretary

After months of work, the Division of Mental Health, Development Disability, Substance Abuse Services submitted "The State Plan 2001: Blueprint for Change" to Department of Health and Human Services Secretary Carmen Hooker Buell on November 1, 2001.

The state plan document was developed in response to reform legislation recently passed by the North Carolina General Assembly. The reform legislation intended the state plan to be a document that would implement the legislation and enact reform across the state. The Department is required present the state plan to the Legislative Oversight Committee on MH/DD/SA Reform on December 1, 2001.

The plan proposes a number of significant changes in how North Carolina offers services to people with mental illness and their families. A few highlights include:

Improving access: The state will establish an 800-line to take calls 24 hours a day/7 days a week staffed by clinically trained individuals. Individuals calling the number will have an initial screening and then be referred to services or for additional assessment. All requests for services will have to be approved through this system.

Targeted populations and services: The reform legislation has changed the focus from offering services to all, to targeting state resources to specific populations. The plan details the targeted populations eligible to receive services. For adults they include persons with severe and persistent mental illness (SPMI), serious mental illness (SMI), and within those groups, specific populations of persons with multiple diagnoses, homeless, in the criminal justice system, elderly, or deaf. For children the targeted populations are those with severe emotional and behavioral problems and their families, children with moderate mental health problems and their families, and those with mild problems requiring early intervention and prevention.

Having defined the targeted populations, the state plan identifies a broad continuum of services that should be available to individuals who are part of the targeted populations. These services are based on best practice standards and include services such as crisis services, rehabilitation services, assertive community treatment, residential services, medication management and, additionally for children, respite and wraparound services.

Providing Services: The plan moves the state away from a community mental health center model. Area programs will become local management entities (LMEs) and will offer limited services. LMEs will be responsible to develop and manage a community network of private and nonprofit service providers.

Over the next few years communities will need to engage in a process to develop a local plan to meet the expectations for service and management put forward in the state plan. As we know more about how this process will proceed, NAMI North Carolina will provide additional information. For now, learn more, ask questions, and look for ways to be involved community discussions. This will be a critical process for NAMI members to be involved in to shape the future of our system.

Want to Know More?

NAMI North Carolina has summarized the draft state plan and its attachments and has made a response in "Where We Stand on the Plan." This summary can be found at: www.naminc.org/plan-home.htm, or is available from your affiliate president or the state office.

The state plan can be found at: www.dhhs.state.nc.us/mhplan/draftplan.htm

NAMI North Carolina Takes Action Over Seclusion and Restraint Rules

NAMI North Carolina has filed an administrative petition with the Division of Mental Health, Developmental Disabilities and Substance Abuse Services challenging the Division’s actions related to the adoption of rules to implement legislation governing the use of seclusion and restraint.

Following reports in 1999 of unreported deaths in facilities, NAMI North Carolina and other advocacy groups worked to pass progressive legislation regulating the use of seclusion and restraint interventions. Temporary rules to implement the legislation have been in effect since January 2000.

As the time approached to enact permanent rules, provider groups began to raise concerns about the cost of implementing the rules. They proposed enacting "deemed status" with regard to seclusion and restraint rules, meaning that if they met federal Medicaid requirements they would not have to meet any North Carolina requirements. A comparison of the federal and state standards revealed that state standards were better in four areas. These areas were around training, documentation, debriefing, and the definition of physical restraint. As a compromise, it was proposed that deemed status be accepted except in those four areas.

This compromise was presented to the Commission on MH/DD/SA along with a revised fiscal note and the Commission passed those rules. Subsequently, the Department of DHHS determined that funds could not be identified to implement the rules and therefore the Division refused to file the rules around training, documentation, and debriefing with the Rules Review Commission for final approval.

NAMI North Carolina’s petition challenges the Division’s failure to file the complete set of seclusion and restraint rules with the Rules Review Commission after the Commission on MH/DD/SAS adopted those rules.

Currently there is chaos, with some old rules in place, temporary rules expiring, and some new rules being proposed. At the present time it is difficult to know what the rules governing seclusion and restraint are and it is likely that the rules are out of compliance with the statute.

NAMI North Carolina has petitioned the Division to review its conduct and has asked that the state budget office do a new fiscal note on the cost of these rules. NAMI North Carolina also asked the Rules Review Commission to delay action on the rules because the full package of rules that was passed was not presented. The Commission agreed to delay action on the rules until December.

NAMI North Carolina is in full support of the action taken by Commission on MH/DD/SA to pass rules governing the use of seclusion and restraint. It is our hope that our petition will encourage the Division to support the Commission’s action as well and move forward to implement the full package of rules offering improved protection for people placed in seclusion and restraint.

We Have Much to be Thankful For

This is the time of the year when most of us reflect on what we are thankful for. I, personally, would like to thank the fine staff at the NAMI North Carolina office. Their dedication and hard work make possible the variety of programs and support available to our affiliates.

I want to thank each member of the NAMI North Carolina family, especially those who volunteer as Family-to-Family teachers and support group facilitators. Thanks to those who serve as officers and board members. Thanks to the NAMI people involved in the Young Families Program and thanks to those who have spent countless hours on area boards helping to advocate for better community services.

As members of NAMI North Carolina, we have much to be thankful for, and we have a responsibility to ensure the continuity of these programs and services. NAMI North Carolina needs your financial contribution. Your gift will help to ensure that someone close to you may experience a fuller life, now and in the future. Please give generously.

NAMI Provider Education:

A Reality in North Carolina

Family care of persons with serious and persistent mental illness has become the norm. The majority of persons who have a serious mental illness receive their day-to-day care from families who have little knowledge of the major mental illnesses.

Care in the community really means brief hospitalization until a person is "stabilized" on medication. Community care means that families have the burden of care without the knowledge or support to provide a rehabilitative environment for someone who has a serious mental illness. Families get "on-the-job" training to be case managers and rehabilitation therapists for their relatives. They are pushed onto the highway of mental illness with no road map, no guideposts and no way of knowing how long the trip will be.

Through the NAMI Provider Education Course, mental health care providers can learn to appreciate the courage and persistence it takes for consumers and their families to find ways to reconstruct lives that are lived on the edge. Providers learn the value of the natural support system of their clients and to include families as an integral part of the treatment team. The course teaches providers to develop effective, equitable partnerships with consumers and families that can guide the recovery process. With this partnership approach, burnout can be lessened for consumers, families and professionals.

The course helps mental health clinicians learn to develop a culture of collaboration with families on behalf of, and with, consumers. Clinicians have knowledge to share with families and families have knowledge about the consumer that is invaluable to clinicians for successful treatment and rehabilitation. This course emphasizes the involvement of consumers in the challenging work of participating on a teaching team.

In September 2001 after a year of planning, a pilot project jointly sponsored by NAMI North Carolina, the NC Division of MH/DD/SAS and the North Carolina Council of Community Programs was started in North Carolina at three progressive Area Programs: Blue Ridge (Asheville), Neuse (New Bern) and Piedmont (Concord). A team of five people including two consumers, two family members and a mental health professional who has a relative with a brain disorder are teaching two 30-hour NAMI Provider Education Courses at each of the three Area Programs.

The education of families, mental health clinicians and consumers about mental illness and the recovery process is vital for successful treatment. Families, clinicians and consumers learn to develop a healthy respect for each other’s knowledge and perspective through the NAMI education programs.

The NAMI Provider Education Course, developed by Joyce Burland, Ph.D., is currently being taught in ten states. Dr. Burland also developed the NAMI Family-to-Family Education Program.

Depression in Older Adults

In a given year, between one and two percent of people over age 65 not living in nursing homes or other institutions, but living in the community, suffer from major depression and about two percent have dysthymia. Dysthymia is a chronic, low-grade depression lasting longer than 2 years. Despite the commonly held misperception, depression is not a normal part of aging.

Because major depression is typically a recurrent disorder, relapse prevention is a high priority.

Additionally, recent studies show that 13 to 27 percent of older adults have subclinical depressions that do not meet the diagnostic criteria for major depression or dysthymia but are associated with increased risk of major depression, physical disability, medical illness, and high use of health services. Even low-grade depression has been proven to be a factor in heart disease and high blood pressure. Ironically, the medications for these two illnesses can, in themselves, add to depression.

Subclinical depressions cause considerable suffering, and some clinicians are now beginning to recognize and treat them.

Suicide is more common among the elderly than in any other age group. Research has shown that nearly all people who commit suicide have a diagnosable mental or substance abuse disorder. In studies of older adults who committed suicide, nearly all had major depression, typically a first episode, though very few had a substance abuse disorder.

Suicide among white males aged 85 and older was nearly six times the national U.S. rate in 1996, the most recent year for which statistics are available (65 per 100,000 white men over the age of 85 compared with 11 per 100,000).

As the population grows older, untreated depression among senior citizens is becoming a more widespread problem. The depressed older person often mistakes his or her feelings of symptoms for dementia or the normal aging process. Many older people and their families don't recognize the symptoms of depression, aren't aware that it is a medical illness, and don't know how it is treated. Also, many older people think that depression is a character flaw and are worried about being stigmatized, so they blame themselves for their illness and are too ashamed to get help. Others worry that treatment would be too costly.

Symptoms in older persons may differ somewhat from symptoms in other populations. Depression in older people is often characterized by memory problems, confusion, social withdrawal, loss of appetite, inability to sleep, irritability, and, in some cases, delusions and hallucinations. Older depressed individuals often have severe feelings of sadness, but these feelings are not acknowledged or openly shown.

One of the biggest obstacles to getting help for clinical depression can be a person's attitude. Many people think that depression will go away by itself, or that they're too old to get help. Such views are simply wrong.

Treatment with a selective serotonin reuptake inhibitor may be helpful for very elderly patients who are "miserable" but don't satisfy criteria for major depression.

With treatment, even the most seriously depressed person can start to feel better, often in a matter of weeks, and return to a happier and more fulfilling life. Such an outcome is a common story, even when a person felt hopeless and helpless.

The combination of antidepressant medication and interpersonal psychotherapy has been proven most successful in reducing depressive relapses in older adults.

There are many very effective medications, but the three types of drugs most often used in the past to treat depression are tricyclic antidepressants, monoamine oxidase inhibitors (MAOIs), and lithium. Now, selective serotonin reuptake inhibitors (SSRIs) are also widely used. Lithium is very effective in the treatment of bipolar disorder and is also sometimes used to treat major depression.

Some factors to remember about treatment of depression with medication: Different people may need different medications, and sometimes more than one medication is needed to treat clinical depression. Improvement usually occurs within weeks.

Information obtained from NAMI and NIMH websites

Lenoir County Second New Local Affiliate This Year

NAMI Lenoir County became NAMI North Carolina’s second new affiliate this year. Ann Ruggiero and Amanda Sutton, both of Kinston, wanted to capitalize on the success of their recent Family-to-Family class. Their continuing efforts to expand the group resulted in nineteen people attending an organizational meeting on October 25. Numerous individuals vocalized their intent to have an impact in the community.

You can find more information about their meetings at www.naminc.org. Click on Affiliates. Thank you Ann and Amanda!

Schizophrenia Carefiver Project Survey

In June 2001, some 701 caregivers of persons with schizophrenia responded to a questionnaire from Consumer Health Sciences, under the title of the Schizophrenia Caregiver Project. The average age of the patients involved was 39 years. Below are some of the data compiled from the survey.

Primary Residence of Patient (n=701):

42% Live with caregiver
37% Live independently in apartment or home
8% Group home or halfway house
2% Boarding home
2% Nursing home
3% Psychiatric institution
1% Correctional facility
4% Other

54% Community mental health center
37% Psychiatrist's office
7% Hospital
4% Family doctor's office
4% Clozaril clinic
2% VA clinic
7% Other
4% Receives no mental health treatment

Use of Antipsychotic Medication:

68% New atypical antipsychotic medications only
7% Traditional antipsychotic meds only
13% Traditional and atypical meds combined
12% No antipsychotic medication used

Source: Consumer Health Services, "The Schizophrenia Caregiver Project," June 2001

2002 Memberships Now Due

NAMI memberships expire each January and we are sure that no one wants to let his or her membership lapse!

NAMI North Carolina affiliates have been collecting membership dues for the 2002 membership renewal effort. If you haven’t renewed your dues yet, please contact your affiliate leaders as soon as you can. Save time and effort for your affiliate leaders by contacting them now.

Remember, with your local affiliate membership also comes membership with NAMI North Carolina and our national organization, NAMI.

Please, if you haven’t renewed your membership yet, take a moment and do it now!

News from NAMI

The NAMI national board of directors met for two very full days on November 9^th and 10^th and for me, as a new board member, it was an exciting experience. I’d like you to know about some of the highlights of that meeting.

The most significant business to come before the board was the new strategic plan to get NAMI moving forward again after a year of marking time. Along with our new Executive Director, Rick Birkel, excitement and energy and hope were in the air. This plan was developed by a broad based group representing the NAMI board, state presidents, consumers, executive directors of state organizations and key staff. I was appointed to this planning group to represent the viewpoint and the needs of NAMI state organizations and their members.

There is a growing recognition that what happens and (sometimes doesn’t happen) in every single state is important and as a national organization, NAMI must be strengthened from the bottom up and the top down. The NAMI board unanimously endorsed the plan, but there is much work to be done before the recommendations become reality. This is the road map and we know where we want to go. Now comes the job of figuring out how to get there. A major part of the implementation plan is the need to seek financial support from corporations and foundations to sponsor certain elements of the plan.

A proposed NAMI Center for Research and Practice is one of the most exciting parts of the plan. It will develop and serve as a clearing house and technical assistance center to support implementation of evidence-based, culturally competent practices, services and supports. This kind of comprehensive activity does not exist anywhere in the country. Dr. Xavier Amador will join the NAMI staff to direct this effort. Many of you will remember his excellent presentation at our annual conference last spring. Financial and university sponsors have been identified and discussions are underway to gain their support.

The NAMI Policy Research Institute Foundation (NPRI) will broaden its scope beyond medical research to include the range of programs and policies that impact the lives of persons with severe mental illnesses. As part of this wider effort, some of the other policy issues will include:

• A taskforce on children and adolescents with mental illnesses;
• A taskforce on mental illness, law and ethics;
• A taskforce on mental health systems, financing and long-term care;
• A taskforce on employment and public benefits; and
• A taskforce on housing and homelessness.

It is proposed that the taskforces will be composed of NAMI grassroots leaders, family members, consumers and leading experts. We all realize that taking medicine is only the first step. To achieve recovery, other elements such as housing and work must be present.

Again, this is a blueprint for the future; it is still to be realized. But there is a strong conviction that we are all in this together, and at the national level there is also an increasing recognition of the importance and value of every state and every affiliate. This has resulted in the formation of a new State-National Committee, to which I have been appointed. We need all three levels of our organization: affiliate, state and national to be part of one big circle so that support and obligation flow around the circle. In that way, all of NAMI can prosper and we can come closer to our goal of achieving a better life for those with severe mental illnesses.

Board Challenge, Your Challenge

Returning to the NAMI North Carolina Board of Directors after a number of years, I was electrified at the first meeting I attended, by the Board’s commitment to double its contributions this year. This challenge raises the total commitment of Board member donations to about $18,000. Your Board of directors, already donating their time to the organization, is generously willing to open their wallets and address the organization’s financial needs.

The operation of NAMI North Carolina is largely supported by contributions from individuals, and cannot exist without them. Our goal this year is $225,000 in contributions from individuals. The Board’s commitment leaves $207,000 to be raised by other individuals throughout the state at a time when non-profits everywhere are suffering decreases in donations, due to the events of September 11.

The attack on the World Trade Center, the Anthrax threat, and the war in Afghanistan have changed the world as we knew it before the 11^th of September. But while we are all consumed by these incredible events, some things have not changed at all since the September 11^th attack and its aftermath. People with mental illness are still not getting the treatment and support that our communities should be providing. Families are still bewildered by illnesses that can be so hard to understand, and they don’t know what to do.

President Bush has challenged America to continue operating as usual. I challenge you to open your wallet and keep NAMI North Carolina operating as usual.

Conference on Depression and Suicide

The 5th Annual Conference of the National Organization for People of Color Against Suicide, Breaking the Silence: Speaking out on Depression and Suicide, will be in Durham on February 1-2, 2002.

According to the Surgeon General, suicide is a national health crisis. Dr. David Satcher sounded the alarm about its escalation in communities of color, especially among young people ages 10-24. The suicide rate among African American teens more than doubled between 1980 and 1998. North Carolina leads the nation in the rate of increase of suicide among young men of color.

Invited as keynote speaker for the conference is Dr. David Satcher, with confirmation of attendance from his Assistant, Dr. David Litts.

Panels and workshops include Report from North Carolina Teen Suicide Prevention Task Force; Mental Illness & Suicide: Minorities are Not Immune; Cultural Competency – Working in Communities of Color; Suicide in Latino Communities, among Gays and Lesbians; Community Crisis Planning; The Role of Faith-based Groups and Community Organizations; Suicide Among Asian Pacific Island Americans and in Native American Communities; What’s Happening with Youth? Pop Culture and Suicide; and Learning Disorders, Depression and Suicide.

For further information call (toll free) (512) 531-5067, ext 2190 or e-mail: nopcas@onebox.com

And the Winner Is...

Congratulations to David Jones of Concord! David bought the winning ticket in our recent raffle and now may be watching television using his new DIRECTV satellite TV system.

Many thanks to Owen Pinckney and DIRECTV for the donation of this terrific prize, and thanks also, to the many people who bought raffle tickets!

Coming Events

National Organization for People of Color Against Suicide, Breaking the Silence: Speaking Out on Depression and Suicide, Durham. For more information, call toll-free (512) 531-5067, ext. 2190.

Breakout VII: A National Conference on Psychosocial Rehabilitation and Deafness, Raleigh. For more information, contact Janet Yankowsky at janety@cocentral.com

NAMI North Carolina Spring Conference, Research Triangle Park

As You Shop, Remember This

Shop at Amazon.com through NAMI North Carolina’s website (www.naminc.org) and a portion of your purchase total will be credited to NAMI North Carolina. You must first go to NAMI North Carolina’s website and then access the amazon.com website from there to give credit to NAMI North Carolina.

Support NAMI North Carolina every time you shop at Bi-Lo by enrolling in the Bi-Lo Boosters program. Get a Bi-Lo free "bonuscard" and register by calling toll-free (877)426-6783, or logging onto www.bi-lo-com. NAMI North Carolina’s booster number is 6440.