NAMI members have long recognized that the system of care for persons with mental illness is broken and needs major renovation. Since our founding, advocacy efforts have focused on developing a continuum of care that is adequate to meet the needs of people with mental illness. But after a year of negative publicity about the state of the psychiatric hospitals and community mental health system, government leaders are paying attention.

In February two separate but complementary major initiatives began to develop plans for redesigning the system of care: 1) A legislatively mandated study through the state auditor’s office to look at the state hospitals as well as the capacity of the Division and Area Programs to provide community care, and, 2) A Division of Mental Health, Developmental Disabilities, Substance Abuse Redesign Process. Both initiatives are very serious efforts to reform the public mental health system and are likely to result in substantial changes over the next several years.

During the months of June and July there will be important opportunities for families and consumers to provide input to both initiatives. The auditor’s office has scheduled public hearings in Asheville, Charlotte, Fayetteville, Greensboro, Greenville and Raleigh. Public comments will be requested on the following topic areas: types of services offered locally; types of services needed; availability of services; quality of services; and cost of services. To participate, sign up to speak from 6:00 p.m. to 7:00 p.m. The public meetings will run from 7:00 p.m. to 9:00 p.m.

(See the calendar on page 2 for meeting dates and locations.)

The Division’s redesign process has been led by a Design Team with representatives from multiple stakeholder groups, including NAMI North Carolina. During the first week of June the first draft of a redesign document will be released for public review and comment. All NAMI North Carolina affiliate presidents will be receiving a copy and additional copies are available from the state office and the Division. After the release of the draft NAMI North Carolina also will be developing a companion summary which will be sent to affiliate presidents and put on our web site. Among the proposals in the draft:

Responding to this first draft of recommendations is an important opportunity for family members and consumers to shape the outcome of the redesign process. Affiliates are encouraged to review the document and send comments to the state office and/or the Division of Mental Health.

Mental Illness Awareness Week (MIAW) is October 3-9. By now, your affiliate should have received NAMI communications department’s MIAW information kits. The kits are designed to help you shape MIAW into a commemorative week, reflective of your community’s own needs and accomplishments.

All MIAW information is also available on NAMI’s website at www.nami.org.

Please take this special opportunity to provide your community with much-needed information about mental illness and about your NAMI affiliate.

When should you not talk to your relative about medication compliance? Don’t push the issue if your relative gets inflamed or agitated, especially if he or she is becoming psychotic. An understanding of the need to take medication "goes out the window" when acute symptoms return, and no amount of convincing may work. In this situation, contact the treatment service or the crisis team immediately.

Otherwise, it is usually OK to ask about compliance. If you suspect your relative may not be taking his or her medicine, ask—but in a way that is not judgmental or threatening. Discuss noncompliance as something normal, perhaps mentioning a time when you did not comply with medication. If you find out there is noncompliance, don’t punish or scold your relative or it may be the last time you get an honest answer. Gently ask the person why medicines are being rejected without arguing about it.

Avoid starting with the "strong arm" approach, which can lead to power struggles. Try to persuade your relative to take medication by finding a perspective you both can agree on. Focus on day-to-day benefits such as better sleep, anti-anxiety effects, etc. Sometimes, what seems to be "denial" is really embarrassment about being ill or is part of a healthy desire to appear well. Be sensitive and understanding about how difficult it must be to admit that you are "mentally ill."

If your relative complains of side effects, be sympathetic. Ignoring complaints about side effects won’t make them go away, and indifference may make your relative feel neglected and misunderstood. Acknowledge your relative’s complaints. We all want to feel supported about our worries and concerns. However, don’t complain on your own about side effects or the need for medicine in front of your relative—this can erode his or her willingness to stick with any medication regimen. Instead, discuss your concerns with the doctor.

NAMI NC is pleased to announce that the Western Carolina Young Families Program has been awarded a $12,000 grant. This grant is made possible through the Sycamore Fund and Peterson Family Endowment Fund of the Western Carolina Community Foundation.

The Young Families Program’s objective is to support and empower families of children and adolescents with mental illness/brain disorders. It is our aim to assist these families in accessing appropriate care by (1) providing mentors who can offer support and advocacy for needed services, and, by (2) training teachers, guidance counselors, school nurses, and other school personnel on symptoms of mental illness in children and adolescents and appropriate responses, supports, and treatment referrals. The plan is to train 10 mentors to help at least 20 families and to reach 500 school professionals in Western Carolina.

NAMI NC’s Family Advocate in Western Carolina is Diane Weaver. Her work currently keeps her busy with families from Henderson, Buncombe, and Transylvania counties. She is also organizing young family groups who meet monthly for support and education. Her work goes a long way in getting NAMI’s name and mission known in the communities of western North Carolina.

NAMI North Carolina depends greatly on the fund raising efforts of our Board of Advisors. During this past fiscal year, approximately $100,000 was raised through our advisors. NAMI North Carolina is in the process of recruiting and training Board of Advisor members for the next fiscal year.

The success of the group is dependent on its members telling the NAMI story and getting people to make an investment in our programs and services. The group is instrumental in maintaining the high level of programs, such as Family-to-Family, Helpline and Clippings, that are offered.

The Board of Advisors is an opportunity for individuals to make a direct impact on NAMI North Carolina. Zanna Cipriani, Director of Development, provides training, materials, support and updates for the local efforts of advisors. In turn, Board of Advisor members attend a kick-off meeting, make local solicitation calls and attend a campaign finale celebration.

Recently, several newspapers in North Carolina have published articles dealing with severe and persistent mental illnesses and are to be commended for their efforts in providing education to their readers. The features have presented, in considerable depth, the biologic nature of these diseases and some of the treatments provided. At the same time the articles also noted the difficulties and dilemmas that are faced when the safety net of services has too many holes in it. Good solid information is the best possible way to combat the stigma that is associated with mental illnesses and to raise the general public's awareness of the issues involved.

Our task as members of NAMI is to voice the concerns and needs surrounding mental illnesses in such a way that they transcend NAMI and become a part of the main stream agenda. Mental retardation and cancer used to be words spoken in whispers, if at all. Now we must learn from that history. Every family has been touched by mental illness, either directly, or indirectly by knowing of a neighbor, acquaintance, someone in an organization, someone where you work or play, or someone where you worship. We must spread the word that these are equal opportunity diseases and as such belong to everyone.

Therefore our advocacy efforts must continue to be directed to a broader audience than merely our elected officials. The message will not be loud and clear to our legislators until they begin to hear from the rest of their constituents that it is in the public interest to provide appropriate services to those with mental illnesses, that it is a public health issue and that it is a local issue in their districts.

So, if some newspapers in the state have done good work, now is the time to encourage others to do so also. Talk to your local media, tell your story with its ups and downs, with the services that help and the services that would help if they were only available. This is a two front campaign. There must be advocacy in Raleigh at the state level but we must begin the effort in our home communities as well. —Eileen Silber

—From Bipolar Network News, published by Stanley Foundation Bipolar Network, Bethesda, Maryland

Depression is the most common mood disorder. Yet, large numbers of persons suffering with depression don’t receive the help they need. Cultural background often plays a role in how symptoms are reported and interpreted. An understanding of cultural background has a critical role in recognition and treatment of clinical depression.

Expressions often used by African-Americans might include being "worn out" instead of feeling sad, or to say their "last nerve is being worked" as opposed to "I feel irritable."

The most commonly reported symptoms might include weight gain and changes in appetite. To date, the majority of mental illness research has been done only on white males. The lack of minority research has hindered mental health professionals’ understanding of the psychological and sociological factors that impact the African-American community. Efforts of community outreach may engender the misperception that the system might also reach out to take away children from "bad" parents, or to involve a social worker or others in family affairs, thus threatening the family infrastructure.

A generalized mistrust of the medical profession might discourage African-Americans from reaching out to psychiatrists or mental health workers. An African-American would be more likely to approach a minister with his or her problems. This could lead to the feeling that prayer and faith are the only acceptable options for treating depression. Also, being told by ministers that depression is an invasion "of the devil" is a common response.

Mental health professionals need to develop an understanding of the African-American community. African-Americans also need to become better educated about mental illness.

"An interactive and informative web site for people with a psychiatric condition that addresses issues and reasonable accommodations related to work and school. This is the only site designed exclusively to provide information about the Americans with Disabilities Act (ADA) and other employment and education issues for people with psychiatric disabilities."

The website is from Boston University’s Center for Psychiatric Rehabilitation. The website address is:

www.bu.edu/sarpsych/jobschool/

-from NAMI Moore County Newsletter

Helpline 1-800 451-9682

Burlington(336) 584-9647

Cabarrus County(704) 788-3793

Craven County(252) 637-7312

Guilford County(336) 370-4264

Iredell County(828) 876-0191

Jackson County(828) 456-3024

Lee/Harnett Counties(910) 893-5035

Robeson County(910) 521-9532

Morganton(828) 437-1210

Roxboro(336) 597-3916

Wake County, 2 classes(919) 851-2637

Please contact the NAMI North Carolina state office at (800)451-9682 for other possible locations for

Family-to-Family classes.

The Governor’s Advocacy Council for Persons with Disabilities (GACPD) is part of a nationwide system of protection and advocacy agencies mandated by federal and state statutes.

GACPD staff members provide advocacy services to any citizen of North Carolina who has a physical or mental condition that substantially limits at least one major life activity, and whose case falls within the agency’s priorities and case selection criteria as set by the board each year. A person with a physical or mental condition includes a person with a mobility impairment, a learning disability, a mental illness, or a neurological impairment. "Major life activities" include walking, seeing, speaking, learning, getting a job or an education, breathing, caring for oneself, hearing, performing manual tasks.

Advocacy services staff members investigate complaints concerning the violation of the civil rights of persons with disabilities and act for the resolution of these complaints. The legal services section is staffed by attorneys, who provide legal assistance and representation in judicial forums for all GACPD clients. GACPD’s staff reviews and recommends changes in laws, rules, regulations, programs and policies to ensure that the rights of persons with disabilities are safeguarded.

How Can GACPD Help?

If you are a person with a disability and need help in speaking or acting upon your rights, GACPD can help by providing information, advocacy services or legal representation. Information about laws that protect the rights of people with disabilities and someone to talk over a plan of action may be all you need to become your own best advocate.

Advocacy services may be provided if you feel you need someone to speak for you or to be by your side when you are negotiating for your equal rights under the law. Client advocates know about state and federal laws concerning the rights of people with disabilities and they are experienced negotiators.

Often advocates can work out differences between people and can help you reach an agreement about what is fair treatment or how your disability should be accommodated. The goal is always to give people with disabilities equal opportunity in all areas of life.

Legal representation may be available when problems cannot be solved by working with an advocate alone. Your rights are protected by specific laws, such as the Americans with Disabilities Act.

Judicial and administrative forums can enforce fair treatment of people with disabilities. GACPD's attorneys are specially trained in disability law and can take your case through every step of the legal system, even if your disagreement is with a very big private business or with state or federal government.

Using the legal system to resolve problems of discrimination is more expensive and time-consuming than negotiation. However, often a legal remedy can mean the change in a law or regulation, which will benefit both you and other people with similar problems.

Technical assistance is available to legislators and rulemaking bodies of government to ensure that persons with disabilities receive equal opportunities in every aspect of community and institutional life.

Specific areas of assistance offered: abuse and neglect, education, Social Security disability benefits, assistive technology, employment, transportation, and public accommodations.

How Do I Reach GACPD?

Central/Administrative Office, 2113 Cameron Street, Suite 218, Raleigh, NC 27605-1344. Telephone: (919) 733-9250; toll-free within North Carolina, (800) 821-6922

Eastern Regional Office in Goldsboro — (919) 731-3444; toll-free within North Carolina, (888) 299-8450

Western Regional Office in Morganton — (828) 433-2067; toll-free within North Carolina, (888) 281-5921

North Central Regional Office in Butner — (919) 575-3015; toll-free within North Carolina, (888) 315-4064

South Central Regional Office in Raleigh — (919) 733-9840; toll-free within North Carolina, (888) 733-6526.