Dec 2000/Jan 2001

North Carolina General Assembly to Convene

The North Carolina General Assembly will convene on January 24, 2001. There will be a new Governor for the first time in eight years. Governor-elect Easley has been very supportive of people with disabilities and we are eager to see what initiatives he will present. The Easley transition team is working diligently, particularly on gaining a grasp of the state budget. Rumors are that the state is facing a budget deficit of about $400 million. Such a deficit could severely limit the new Governor’s ability to implement new initiatives.

Most members of the General Assembly are returning, including all members who play a pivotal role in mental health issues. The Democrats will control the House by a narrow four-vote margin. Many anticipate a challenge to Speaker Black’s leadership and it may be more difficult to manage such a divided House regardless of who is elected Speaker.

What will NAMI North Carolina be advocating for?

NAMI North Carolina will target three OMIRA items and two policy efforts that will impact OMIRA goals (See OMIRA on this website) These are:

• Equitable Healthcare Coverage—Parity Require insurance plans to provide treatment for mental illnesses equal to that provided for other major physical illnesses.
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• Access to Permanent, Safe and Affordable House with Appropriate Community-based Services

Reduce some of the barriers to supported housing for people with severe mental illnesses. This includes offering special assistance funds to people with mental illness living outside of adult care home settings, and establishing a state fund to leverage funds to build housing units and to provide a rental/operating subsidy for individuals to secure housing.

• Work Incentives for Persons with Severe Mental Illness

Implement provisions of the Federal Ticket to Work and Work Incentives Improvement Act in North Carolina to allow individuals with disabilities to work and earn up to 250% of the poverty level without losing Medicaid benefits.

• Implementation of the US Supreme Court Case, Olmstead vs. LC

Provide funding to develop necessary community services for individuals currently living in state psychiatric hospitals that have been determined to be capable and desire to live in the community.

• Reform of the Mental Health System

Support the ongoing work of the Joint Legislative Oversight Committee on MH/DD/SA Reform and secure legislative support for recommendations coming from that committee.

NAMI members are urged to talk to or write legislators on the importance of these issues and how enactment of these measures will positively impact the lives of people with mental illness.

To see the full NAMI North Carolina Advocacy Agenda,

background information on the issues, and questions to ask legislators, visit the NAMI North Carolina web site and click on "Legislation"

Year-End:  A Time for Giving

The end of the year brings a unique combination. On one hand there is "the spirit of the holidays," when people try to be especially nice to one another, and truly generous with one another. Whether it’s Christmas, Hanukkah, Kwanzaa, or New Year’s, just about everyone is celebrating a holiday.

On the other hand is the Internal Revenue Service. Since a gift to a nonprofit organization like NAMI North Carolina, made on or before December 31, can be deducted from the taxes you’ll have to pay all too soon, it’s almost as if the IRS is also turning you towards generosity.

As a result, there’s a neat trick for dealing with the anxiety which sometimes comes at the holiday season: you can make a charitable contribution as a gift. I have given up trying to find "something, anything" for my step-mother in California, who already has more stuff than she needs and far more money than I anyway. For the last several years we have made a donation to a good cause and done so in her honor. She’s pleased to be remembered, almost always approves of the cause we’re supporting; we’ve done something good with the money, plus our tax bill next April has gone down!

Even if you don’t have the equivalent of a step-mother in California, now’s the time to make your contribution to NAMI. If you itemize deductions, a portion will come back to you as soon as you do your taxes next year.

Far more important will be the knowledge of what your contribution will accomplish. Mental illness can be a devastating blow, especially for those who don’t understand it. NAMI North Carolina provides education through programs like Family-to-Family and support for families and consumers through 30 affiliates across our state. We know how to help those who need to understand what is happening and how to grapple with it, day in and day out. Our advocacy efforts are critically important as a new Governor and General Assembly try to reform an outdated public system and end discrimination in the private insurance system.

So there are great reasons to make a contribution to NAMI North Carolina at this special time of the year. We’re all about helping people who need help, and engendering understanding and hope when the hour seems darkest. Most amazing of all, the tax collector will reward us for our generosity.

by Eileen Silber

I recently traveled to Malta, a small island in the middle of the Mediterranean. While there I met and talked with a very able young woman who heads a community rehabilitation program for persons with mental illness.

One of the things that was again brought home to me is how truly international these devastating diseases are, along with the recognition that the elements of current standards of good care are also international.

Because Malta was a British colony for such a long time, and then a member of the British Commonwealth before achieving independence, the practice of medicine is much like that of Great Britain.

As we talked, I realized that what is a major concern for us, such as achieving parity in insurance coverage for mental illnesses, was not a problem at all on Malta. Because of the free public health system, everyone has care whether for treatment of diseases of the body or of the mind. It would be nice if our family members had better general health and dental care. The new atypical antipsychotic medications were being used systematically.

Because the total population of the country is less than 400,000 people and it is only 17 miles long, it is certainly easier to provide services since, for example, one rehabilitation program takes care of everyone. As I tried to describe how large and diversified our state is, and how care must be provided in so many different places, my new friend just shook her head in amazement.

The existence of stigma appears to be an even more difficult problem for the Maltese than for us. In many cases, families are not comfortable admitting that a family member has a mental illness and so public awareness and public support for programs is quite low. A family organization such as NAMI simply does not exist and many are going it alone and are isolated. Obtaining housing and work are especially difficult in such an environment.

The visit was an eye opener for me and I returned home even more grateful for NAMI. We work so hard to hang on to the services we have and to make them a little better and a little more available. So, thanks to NAMI, today I see the glass as half full.

The North Carolina General Assembly granted $1.5 million this year for the atypical psychotropic fund. This fund was originally created to provide Clozaril for persons with severe and persistent mental illness and who suffered from psychotic symptoms. The fund now covers the medications Clozaril, Risperdal, Zyprexa and Seroquel for persons who are not able to afford them.

Although there is no waiting list, several qualifying factors must be met. A consumer must:

• Be prescribed an atypical antipsychotic by his/her doctor,
• Be able to show that he/she cannot afford the needed medication,
• Be a client of an Area Mental Health Program, and
• Have applied for and been denied Medicaid, or have lost his/her Medicaid eligibility.

If you have questions about eligibility, talk with your therapist for more details.

Family Members For Study on Genetics of Bipolar Disorder and Schizophrenia

Families with at least two siblings who have suffered from schizophrenia, bipolar or schizoaffective disorder are needed for participation in a study that involves donation of a blood sample and a personal interview. This research is conducted by the State University of New York at Stony Brook in order to find genes that may be responsible for these illnesses, and to develop new treatments. All information collected will remain confidential.

For more information, contact Lynn E. DeLisi, M.D., SUNY SB, HSC T-10, Stony Brook, NY 11794; phone (631)444-1612; email, ldelisi@notes.cc.sunysb.edu. Or call Daria Dodds, Senior Research Support Specialist at (631)444-7622; email ddodds@mail.psychiatry.sunysb.edu

How Affiliates Can Reach Out to Young Families, Part II

(Continued from November 2000 Clippings)

20. Psychiatrists need to hear from NAMI members.
0. Help the child get a diagnosis for his/her biologically-based disorder.
1. Discrete sharing of provider's strengths and weaknesses. You can keep a running list of names referred as stellar psychiatrists, psychologists, social workers, etc. and let a parent choose from the list.
2. Help a parent prepare and/or participate in an IEP (Individualized Education Program). Educate the parent about the IEP timeline, keeping school records, and making sure the school process is on track.
3. Offer one-time assistance to a family such as help with moving, packing, birthday party, and a warm meal when times are hectic or spirits in need of lifting.
4. Put books in affiliate library that relate to children/adolescents with mental illness. NAMI North Carolina has a list to start you off. Also stock NAMI and NAMI North Carolina brochures and newsletters on disorders in children.
5. Recruit parents to speak to community college classes so new social workers and other health care providers are up-to-speed on family/kids' issues.
6. Work with interns from community college to help them understand family advocacy.
7. Train and match mentors with parents. NAMI North Carolina has a training module with manual for mentors.
8. Don't forget to beg or twist arms when parents need assistance.
9. Work to keep good child therapists at our local mental centers. Lobby for better salaries for these folks and a reduced caseload.
10. Appoint an affiliate contact who deals specifically with young family issues. Also, the state office has a network of parents across the state who "have been there" and are willing to offer phone support.
11. Help families deal with the ongoing grieving process we face when a family member becomes mentally ill.
12. Remind families over and over that their child's disorder is not their fault.
13. Ask the family to join your affiliate and sign them up for our young family newsletters by calling the state office.
14. Don't worry about overwhelming or shocking young families with the symptoms or treatment issues your family has experienced. These families have stories that would probably curl your hair. Childhood-onset disorders are chronic and severe.
15. Your example, your ability to survive and become an advocate for your relative offers so much hope to younger families. Share your experiences and let them see how you have survived/overcome obstacles in getting help for your family member.

Please remember: you do not have to be an expert on school issues or on disorders in children to offer support to young families. NAMI veterans and young families have many common needs-—an empathetic ear, affirmation, someone who cares and gives of himself. You can always say "I don't know, but I will help you find out."

Also, parents often need mentors to help them simplify treatment issues, practice communication or negotiation skills, prioritize responsibilities-—things a lot of us can do without being an expert on school law or childhood-onset disorders.

A recent study by researchers at the University of South Carolina School of Medicine found that psychiatric medicines have different effects on certain ethnic groups, and that certain medications may be more successful when used to treat African Americans.

The researchers concluded that when African Americans diagnosed with manic-depressive disorder, depression, schizophrenia and anxiety disorder are prescribed Prolixin or Zyprexa, they have more relief from symptoms associated with those illnesses and improved functioning.

The University of South Carolina study looked into the effect of antipsychotic medications over a 12-month period on 60 African Americans diagnosed with schizophrenia and related disorders.

Some results are—-

• The type of antipsychotic medication used in the care of African Americans with schizophrenia is an important factor in the overall outcome and success of treatment.
• In African Americans, slower metabolism by a specific enzyme may account for differences in the way antidepressant and antipsychotic medications are absorbed by the body and metabolized.
• There is an increased chance of central nervous system side effects and toxicity if dosage is not adjusted accordingly among African Americans, due to a significant difference in red blood cell to plasma lithium ratios.

This study was conducted by Jeanette M. Jerrell, Ph.D. and John L. Wilson, M.A. at the University of South Carolina School of Medicine in Columbia, SC. The study was funded through the South Carolina Department of Mental Health by the South Carolina State Legislature.

NAMI NOTABLES

NAMI Wilson president and Family-to-Family teacher Jerney Minshew and his wife, Sadie, became affiliate leaders when John Baggett , the first Executive Director of NAMI North Carolina, held a press conference at Cherry Hospital in 1986.

New to North Carolina, they discovered they had "jumped out of the frying pan, into the fire" as far as mental health services were concerned. Jerney felt that patients were being beaten and technician morale was bad because of understaffing. He spoke at that press conference, which resulted in 40 staff being hired. Helping their own son has been extended to a lifelong commitment to helping others.

Since 1986, Jerney and Sadie have led NAMI Wilson's support group. It is not unusual for the couple to help people apply for SSI and Medicaid, or visit rest homes where former Cherry Hospital residents reside. Once a month Sadie visits Cherry, often bringing treats and birthday gifts for strangers. "A lot of times these people have no families," says Jerney.

Sadie is on the Human Rights Committee for NC Special Care Center. Sadie is president of the Master Gardeners Association; Jerney is treasurer. Both are active in the Mental Health Association and their church. Jerney is president of Wilson County Residential Services, which provides housing for the developmentally disabled. He also coordinates 21 AARP volunteers who prepare tax returns for the elderly, "That's fun.…You see results."

In comparison, "The mentally ill get the short end of the stick," says Jerney.

His goal is services that are equal to other disability groups. There is now more housing for people with mental illness, but, "It is a slow process." What is needed is a few more leaders like John Baggett and Dave Silber (former NAMI North Carolina president). "With a half-dozen people like that we could make some great strides," says Jerney. People "need to get above their own situation and work for others."

NAMI North Carolina Helpline Coordinator Gloria Harrison says, "It is not unusual to hear from families saying that the Minshews have helped them tremendously." She thinks Jerney and Sadie probably do a lot more than they admit to. "I think that is just the tip of the iceberg."

For Persons with Schizophrenia and Their Siblings

Dr. Miranda Chakos and Dr. Jeffrey Lieberman of the UNC-CH School of Medicine, are seeking volunteers for a neuroimaging study of individuals who have schizophrenia or schizoaffective disorder and their healthy siblings.

Participants will be interviewed and have a Magnetic Resonance Image (MRI) scan of their brain. Eligible subjects must be between the ages of 18-60, have a diagnosis of schizophrenia or schizoaffective disorder, or be a healthy sibling who has a brother or sister with schizophrenia or schizoaffective disorder.

Individuals will be compensated up to $80 for participation.

If you are interested in participating, please contact Susan Barnett, M.Ed. at (919) 966-7631.

For Women with Schizophrenia or Schizoaffective Disorder

Dr. Miranda Chakos of the UNC-CH School of Medicine, is also seeking volunteers for a clinical treatment study for women with schizophrenia or schizoaffective disorder who continue to be troubled by symptoms of their illness, despite adequate treatment with their antipsychotic medication. This study examines the benefits of adding low doses of estrogen to their antipsychotic treatment regimen to determine whether estrogen reduces their symptoms, and improves socialization and cognitive functioning.

Participants will have a full psychiatric and medical examination, including a mammogram and gynecological evaluation. They will also have psychiatric evaluations approximately every two weeks during the 11-week treatment trial. Subjects will be treated without charge and will receive $10/week during the course of their study participation.

Please contact Susan Barnett, M.Ed. at (919) 966-7631 for more information.

UNC School of Social Work Collecting Stories

In honor of its 80^th anniversary, the UNC-CH School of Social Work is encouraging submission of stories about the many ways social workers trained there have made and are making a difference in communities throughout North Carolina. "What better way to celebrate our 80^th birthday as the first School of Social Work in the state than to collect these stories and share them with the public," said Interim Dean Kim Strom-Gottfried.

The stories should demonstrate a direct impact on a client or community and represent a broad geographic range in all areas of service, as well as client and community diversity. Stories should also be examples of dedicated, innovative or pioneering work. Stories may be submitted to the School of Social Work and should be limited to 500 words or less.

The collected stories will be used in a variety of ways. Some will be featured in media coverage of the school’s anniversary and in Contact. In addition, 80 stories will be featured in a special publication celebrating the school’s anniversary.

All stories can be submitted to Mary Beth Hernandez, UNC School of Social Work, 301 Pittsboro Street, CB #3550, Chapel Hill, NC 27599-3550 or by e-mail to www.ssw.unc.edu.

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.

Support NAMI every time you shop at Bi-Lo! Enroll in the Bi-Lo Boosters program by calling toll free 1-877-426-6783 or logging onto www.bi-lo.com. You’ll need your Bi-Lo "bonuscard" number and NAMI’s Boosters number 6440. Bonuscards are available, free, at any Bi-Lo.

Have you been looking for an opportunity to make a difference? Four jovial men seized their opportunity to teach with their wives, the Family-to-Family Education Course in their communities. This is the most men ever for such a training. This article focuses on these men.

Tony Ward of New Bern, found the training "enlightening and informative." He feels confident about teaching the course after taking the weekend training. "The biggest problem [with mental illness] is lack of awareness. Once people start feeling comfortable, things progress from there. When you are positive, things happen." He and his wife have scheduled their first classes for January.

Joe Wood of Asheville, was "surprised at the information and facts concerning mental illness that I didn't know and I now have a much better understanding with which to share with others."

James Byron, of Cary, informs us, "I was talked into taking NAMI's Family-to-Family [Education] course in the first place and I didn't really expect much from it. But I knew I needed something because mental illness in my family had our lives spinning out of control. So I went. If you have been through the class, you know what a difference it makes. Anyone with a mentally ill family member can benefit from Family-to-Family, regardless of gender. Maybe having male teachers will make the course seem more accessible to men. I hope so. And I hope that guys who have taken the class will consider becoming trained to teach it. You can do it. You know, if it has made a difference to you, just think of the good you can do to help another family cope."

"I just wanted to say that this weekend was a life-changing experience for me," says Michael Blue, of Pinehurst. "It made me aware of issues that I don't think I would have otherwise been aware of. This information will definitely help me to be a better husband and a father for my family."

Don't let the next training opportunity pass you by! There will be another Family-to-Family teacher training early in 2001. Call for more information, or to get your name on the list, 1-800-451-9682.