December 1999

This is the season for getting prepared...for holidays, for a new year, for a new century. It also is time to prepare for upcoming elections and the legislative session. As we look back, it would be easy to conclude that the past decade has not been good for our concerns. Our Governor has ignored the public mental health system, state funding for mental health has decreased to pay for other priorities, state hospitals are in disrepair, and many area mental health programs are now slashing services.

If the past has not been what we want and need for people with mental illness, then we must take responsibility to change it in the future. Elected officials respond to political pressure from constituents. It is well recognized that the level of influence of the mental health/developmental disability/and substance abuse constituencies is far below what would be expected given the numbers of people affected by these disabilities (as high as 1 million people). In short, we have not mobilized our "people power."

This is an election year. It is time to ask questions and demand answers from those in office and those who seek office. If we do not make the needs of people with mental illness a political issue, who will?

Although the legislature will not convene until May, now is the time to get to know legislators. Invite them to an affiliate meeting. Take them out to lunch. Call them on the telephone. Tell them about the treatment and support needs of people with mental illness. Ask them what they plan to do to address those needs. Keep in regular contact.

Attend meetings of candidates. Identify yourself as a member of NAMI. Raise the needs of the mental health system. Ask what they will do to address those needs if elected. Keep in touch.

This is something we all must do, not one or two but thousands. It’s time to speak out...for a change.

In the aftermath of Senate Bill 10, the legislation to increase regulation of adult care homes, and in response to a legislative special provision, Secretary Bruton has called on the Institute of Medicine to convene experts from across the state to develop a long range plan for the establishment of a continuum of long term care. The Task Force on Long Term Care will be co-chaired by Secretary Bruton and Glaxo-Wellcome Chairman Robert Ingram.

Although long term care often is seen as an issue affecting only the aging population, increasingly it is an issue affecting persons with mental health and developmental disabilities. NAMI North Carolina executive director Beth Melcher has been named to the task force to represent the needs of these individuals.

An estimated 9,000 individuals with mental health and developmental disabilities reside in adult care homes, also referred to as domiciliary care or rest homes. Very often, individuals reside in these facilities not by choice or because it is appropriate, but because no other housing options are available. The needs of individuals with mental health and developmental disabilities are dramatically different from the aging population. The challenge is to improve the quality of life for those individuals currently in adult care homes as well as to develop more appropriate alternative settings.

The task force plans to meet through the spring of 2000 and present its recommendations to the general assembly in May.

NAMI Wayne County hosted NAMI North Carolina’s first fall institute on October 23 at Wayne Community College in Goldsboro. Redesigning the Future: Reforming the Public System of Care was attended by approximately 115 family members, consumers and professionals from across the state.

An outstanding array of speakers included Stephen Preas, M.D., of Atlanta who talked about spending treatment dollars in the most cost-effective way, in particular, investing in the most effective medicines and providing supported housing.

Martha Knisley of The Technical Assistance Collaborative reviewed efforts across the country to reform the mental health system of care with a focus on common themes of success. She emphasized stakeholder involvement and consensus, and developing financial incentives to push reforms forward.

The Honorable Ralph Campbell, Jr., North Carolina State Auditor, provided an overview and status report on the legislatively mandated study of the state psychiatric hospitals and area mental health programs that his office is coordinating. He urged that NAMI members get behind the report when it is released and push for change through its recommendations. "Once it is released," he said, "it is up to you whether it is acted on or sits on a shelf."

Flo Stein of the Division of MH/DD/SAS presented the challenges North Carolina faces in dealing with inadequate resources for providing care to the unserved and underserved seriously disabled people in our communities and the state’s efforts to redesign the system to better use resources.

Workshops, which were well attended, gave participants timely and hands-on information on human rights, advocacy, area boards, and the role of consumers and families in the future of the public system.

If you missed the Goldsboro event, please mark your calendars now for the NAMI North Carolina 2000 Spring Conference which will be held in Winston-Salem on May 12-13. Look for more information in future issues of Clippings.

Your NAMI North Carolina Board of Directors recently established a statewide group called the Task Force on Affiliate Relations. Chaired by First Vice-President Barbara Nettles-Carlson, the group includes both Board members and affiliate leaders representing the Western, Piedmont and Eastern regions of the state.

Those serving from the Board are Joe Donovan and Virginia Morton; affiliate leaders serving are Mary Alice Garrison (Charlotte), Dan and Betty Lane (Asheville), Elaine Purpel (Greensboro), and Johanna and Vic Smith (Wilmington).

The purpose of the Task Force on Affiliate Relations is to address issues of concern regarding the roles and relationships between the state and the local levels of our organization. After an initial meeting at the Fall Institute, the Task Force expects to complete its work by spring 2000. The expected outcome of this work will be policy and action recommendations to the NAMI North Carolina Board of Directors.

In order to examine various perspectives on the issues, the Task Force is soliciting broad input through a questionnaire that has been mailed to all affiliate presidents. Thanks to those of you who have already responded! Those who have not yet responded are urged to do so by December 15.

In addition, any NAMI North Carolina member who wishes to give input is invited to do so by completing a questionnaire. Questionnaires are available by phoning or e-mailing Norma Whitfield at the NAMI North Carolina office. All input received will be given serious consideration in the Task Force deliberations. Thank you for your help with this project.

A recent settlement of a class action lawsuit against the New Jersey Department of Corrections has mandated widespread reform in the mental health care and disciplinary process within New Jersey correctional facilities.

$18 million has been provided by the state legislature, with more funding to follow in the next few years, to create new treatment facilities on the prison grounds; to expand mental health services; to train prison staff; and to hire additional psychiatrists, psychiatric nurses, psychologists, and licensed social workers for assessment and treatment in the prisons.

New residential treatment units and transitional care units are also mandated at various prisons. The senior attorney who represented the plaintiffs stated, "Some of these inmates may never develop the coping skills necessary to adjust to the general prison population and, therefore, may never transfer out of a residential treatment unit."

The lawsuit resulted after an investigation by the Center for Social Justice of reports of brutal treatment in solitary confinement. Without treatment, the prisoners’ mental health deteriorated and they acted out in ways that violated the Department of Corrections’ disciplinary code. The placement in solitary confinement further exacerbated their illness.

Under this settlement, the Department of Corrections will change its disciplinary rules so that a psychiatric evaluation can be done before an inmate is placed in solitary confinement. The training of prison guards and other personnel about mental illness is a positive result of the settlement and should result in a more stable prison population.

This will result in a safer return to society for those prisoners with mental illnesses who complete their terms of incarceration, thereby protecting prisoner and community alike.

—From NAMI South Dakota’s Newsletter, Sept.-Oct. 1999

This column will have a different kind of message than the ones that have gone before it. This will be about myth and reality and how they relate to NAMI North Carolina.

Let me start with the myth. The myth is that NAMI NC has lots of money because the matching fund raiser was so successful two years ago. Our anonymous donors promised to match dollar for dollar whatever our members contributed. The response was magnificent.

The Board of Directors believed that this money should be used to offer more help to a growing number of families faced with severe mental illnesses. Some of the funds raised through that extraordinary effort went to the Family-to-Family Education program which was enhanced and expanded across the state. More teachers were trained and therefore the course was available in more communities. Some of the other additional services were the establishment of the Young Families mentor project, the affiliate grant program, and an advocacy training program to help our members work more effectively for adequate services. All of this took money and you provided it.

Now the reality is that the glow from that incredible success has faded.

Some of you who were so generous may believe that this organization doesn’t need your help anymore, but it does! Your continuing financial support is more important than ever so that we can maintain our programs and reach all the citizens of this state who are affected by serious mental illnesses.

NAMI North Carolina needs each of us to re-examine and renew our support and make the organization our charity of choice.

None of us want to contemplate the painful reality of the alternative, an alternative that might include reduction of programs or some other measure to contain costs. NAMI North Carolina has offered each of us comfort and assistance many times over the years, and now at this special holiday time I ask that you remember and support NAMI North Carolina as generously you can.

NAMI Wilmington sponsored its 11th annual breakfast, attended by about 85 people, including local elected officials, staff from Southeastern Center, consumers, and officials from law enforcement and the media. Jon Evans, a local TV anchor, was the emcee for the breakfast held during Mental Illness Awareness Week and Philip Veenhuis, M.D., Medical Director at the Division of MH/DD/SAS, spoke to the gathering. Entertainment was provided by Cook, a local consumer and member of Ocean House clubhouse.

NAMI Wilmington awarded its Professional of the Year Award to Bill Christ from Southeastern Center; the Community Award to Tandy Carter, Deputy Chief of Police; the Media Award to Scott Erwin, reporter for The Star News; and its Advocate of the Year to Doug and Martha Vaughan, who are retiring from years of service.

A candlelighting on behalf of a relative or friend with mental illness was included as part of the Sunday worship service of Charlotte’s St. Luke’s Lutheran Church. Members of NAMI Charlotte also included an informational sheet on mental illness in the Sunday worship folder to raise awareness.

Members of NAMI High Country in Boone raised $500 for their affiliate at a yard sale held during MIA Week. NAMI High Country will use some of the money for postage for its newsletters and meeting announcements.

 Many donors earning less than $50,000 are not aware that they can deduct charitable contributions from their State of North Carolina taxes.

In October 1998, the N.C. General Assembly raised the non-itemizer tax credit to 7%. North Carolina made history in 1996 by becoming the first state to offer a tax credit for contributions to 501(c)(3) organizations made by individuals who do not itemize deductions.

Since 71% of tax payers are reported to be non-itemizers, this could benefit a large number of people. Furthermore, many NAMI North Carolina members, donors and volunteers earn less than $50,000, the normal baseline for itemization. Thus, this could be of financial benefit to NAMI North Carolina and our generous donors.

To be eligible, donors must not itemize deductions on their Federal tax forms. Donors must keep their receipts. Then, donors should follow the instructions in their North Carolina tax booklet on calculating their deduction and subtracting it from their taxes. The tax credit and appropriate receipts are submitted for state taxes only. The rules state that contributions above 2% of household income can be claimed.

The 7% deduction will go into effect this tax year. We think this is a tremendous benefit to NAMI North Carolina donors and hope that each one takes advantage of this tax savings.

Fifteen years ago we did not know that children and adolescents could suffer from major depression. Today’s doctors are doing a better job of diagnosing depression. Approximately two percent of children and five percent of adolescents are affected. That means depression could affect up to 8 million children and youngsters in the U.S., some as young as 4 or 5 years of age, according to Dr. Peter Jensen of the National Institute of Mental Health.

Depression runs in families. Modern science has proven that fact. We didn’t know, however, to what extent the risk of developing depression was inherited until a recent long-term study examined this risk. Dr. Myrna Weissman and her colleagues at the College of Physicians and Surgeons of Columbia University published the results of their 10 year study in 1997. They found a higher risk of depression and other problems in the children of depressed parents. Compared with children of parents who were not depressed, children of depressed parents were 3 times as likely to have developed major depression, had 3 times the risk of developing phobias, and five times the risk of panic disorders and alcohol or drug abuse. These children were more likely to function poorly at school, at work, and in marriage. In addition, the children of depressed parents recovered more slowly from depressed episodes and their depressions were more likely to recur. For reasons that researchers can only guess, the depressed children from families with a history of the disorder were also less likely than the depressed children of non-depressed parents to seek treatment.

The behavior of children with depression is similar to the behavior of adults with the same disorder. Children can certainly feel persistent sadness. However, they are more likely to be irritable. Symptoms of depression in children also include boredom or low energy, abnormally agitated or slowed behavior, feelings of worthlessness or inappropriate guilt, indecision or difficulty concentrating, inability to enjoy what were previously favorite activities. Children may also experience frequent physical complaints like upset stomach or headaches, major changes in sleeping and eating patterns, frequent absences from school, and a drop in grades. If symptoms last for several weeks, it is time to seek an evaluation.

Phobias and separation anxiety were also found to be serious problems among the offspring of depressed parents. These children developed these problems at an earlier age, especially in girls. Anxiety disorders often precede depression. Dr. Weissman and her colleagues urge pediatricians and family physicians to be alert to family history.

Children may say they want to be dead or talk about suicide. Sometimes they may cause trouble at home or school due to depression but not know how to express their feelings. Depressed adolescents often abuse alcohol or drugs. Of course, parents should take these signs seriously, as should school personnel or medical or mental health professionals. As a matter of fact, the number one cause of suicide in the U.S. is untreated depression. 26 to 33% of adolescent suicide victims have made a previous attempt.

Child psychiatrists have effective techniques for treating childhood onset depression and anxiety disorders, ranging from play therapy, cognitive therapy to medication. A recent study showed that the newer antidepressants like Prozac are effective against childhood depression and do not interfere with physical development.

(Sources: "Personal Health: Children of Depressed Parents at Risk," by Jane E Brody, The New York Times, March 3, 1998; "Treating the Depressed Child" by Jeanne Wright, Special to the Washington Post, December 2, 1996.)

On September 28, 1999, with a repeat session on September 30th, approximately 120 law enforcement officers participated in an eight-hour training session at Sandhills Community College in Pinehurst. This training was possible because of an affiliate grant awarded by NAMI North Carolina. The grant request was written by Linda Evans, MSW, and past president of NAMI Moore County.

Hazel Elmore and Dee DiGregorio co-chaired the training committee and were ably assisted by Victoria Whitt, Assistant Area Director, Sandhills Center for Mental Health; Bob Katrin, president of NAMI Moore County and faculty member at Sandhills Community College; Patricia Toney, Ph.D., also a faculty member at Sandhills Community College; Dee Psyhos, NAMI Moore County member; Linda Evans, MSW; and Ronnie Davis, training officer at the Moore County Sheriff’s Department.

An Educational Needs Assessment was completed by approximately 90 officers prior to the session’s planning and the most desired topics were identified. Due to the many requests for specific topics, the committee decided to do a two-part series. The September sessions focused on clinical issues, and the January 2000 session will incorporate primarily legal issues. Not surprisingly, the most desired topic was "Stress Management for Law Enforcement Officers." All of January’s afternoon session will be devoted to this topic.

Most officers felt that the training manuals they received were very valuable. Final evaluations were very good, with the majority stating that they found the quality of the program to be excellent.

Our appreciation to the many fine professionals who took time from their busy schedules to present an excellent program!

A Penguin Book by Clea Simon

Clea Simon had two siblings who developed schizophrenia when Clea was a small child. She was so young that she did not have many memories of her siblings when they were well. Those she did have were idealized, creating a hero of her brother and a heroine of her sister. Despite this hero worship, instinct told Clea that she should be wary of her siblings long before they became ill. By the time she was a teenager, both siblings were permanently gone from the home, never to return. Her parents never explained why.

This wonderfully written book describes the after affects of growing up in a chaotic family, where she had to take on the role of "the good child," as well as the "healthy child," in order to protect herself and her parents. The result of her roles in childhood was catastrophic to her young adulthood. Clea tried so hard to adapt to others’ needs, that she was unable to attend to her own. A number of relationships with needy men, and demanding women finally led her to therapy.

Ms. Simon, using examples of other siblings she interviewed, gives an overview of the common reactions associated with mental illness in the family. The younger a child is when the illness strikes a sibling, the less likely a child is to know what is normal. Particularly if the parents do not discuss the illness, a child is confused and alone, has to grow up early, but never feels the security of a normal loving family.

During her formative years, Clea had to be constantly aware of the moods of her brother and sister. She had to tell herself not to care when her sister hurt or killed her pets. She also had to not care when her parents could not give her the attention all children need. She saw the sadness of her parents and tried to make them happy by being the opposite of her siblings. This gave her no chance to be herself. Clea’s brother died, and her parents did not even notify her. There was no funeral, and no conversation about what happened. Her sister was sent away, and the family never visited her.

By the time she was in her thirties, Clea finally began to talk to her parents. Learning why they had behaved as they did helped Clea come to terms with the confusion of her childhood. Unfortunately, just as communication was reestablished, her father died, leaving much unsaid.

The book also goes into the heredity of mental illness, and the reasons siblings choose to have or not have their own children. The careers of siblings of the mentally ill are also affected by their life experiences.

This book is not only informative for siblings, but for the parents of those children who grow up in the shadow of mental illness. It is well researched and extremely readable.