Mental Health System Reform Effort Rolling

In mid-September, the leadership of the North Carolina House and Senate named members to serve on the Joint Legislative Committee on Mental Health, Developmental Disabilities, and Substance Abuse. The formation of the Committee was recommended by State Auditor Ralph Campbell after a thorough study of the mental health system completed last spring.

The General Assembly established the Joint Oversight Committee through legislation passed during the 2000 legislative short session. The Committee is charged with developing a plan for mental health system reform and to oversee its implementation.

Those appointed are:

Steve Metcalf , Co-chair; Bill Martin; Austin Allran; Jeanne Lucas; Virginia Foxx; Charlie Dannelly; Oscar Harris; and Bill Purcell

Verla Insko, Co-chair; Edd Nye; Beverly Earle; Walter Church; Martha Alexander; Jim Crawford; Lyons Gray; and Theresa Esposito

The Committee was comprised entirely of legislators to ensure that there would be sufficient legislative commitment and support for any legislation and budgetary requests that came out of the Committee. But while the Committee itself is comprised of legislators, the charge is to "ensure that the Plan provide for the active involvement of consumers and families…"

The Committee is charged with reviewing the recommendations from State Auditor Ralph Campbell and using those recommendations as a starting point to reform the system. Over time, the Committee will need to refine, modify, and develop these recommendations into a plan for the state that will get the backing of the General Assembly and the next Governor.

As the Committee begins its work, it is critical that legislators stay interested and committed to fixing the system. This is an election year and we need to make mental health reform an election year issue. Candidates will have public forums, meetings at civic clubs, gatherings at churches and in private homes. Try to attend these gatherings. Briefly inform the candidates about the problems and needs of the system. Ask questions, because if we don’t ask the questions, legislators won’t know it’s an issue that the public cares about. We need to let them know that this is an issue whose time has come.

The NAMI North Carolina Board of Advisors held its kick-off meeting Friday, September 15, in Greensboro, to get started on our Annual Fund drive.

Chaired by Ken Farrington of Winston-Salem, our Second Vice-president and Development Committee Chair, the Board of Advisors plays a leading role in approaching major contributors for substantial gifts.

Ken emphasized the importance of a revitalized Annual Fund drive. "NAMI used to be entirely too dependent on State government contracts," he noted. (In 1993 almost half of NAMI North Carolina’s revenue came from government grants.) "Now those contracts bring in only about 20%. That’s possible because of the generous support we get from individuals, foundations, and private businesses—mostly individuals." For the 2000-01 fiscal year, the Board has set a goal of $250,000 in individual contributions—about 40% of all revenues.

The Development Committee and Board of Advisors have developed a "Case for Support," which summarizes the education, support, and advocacy programs that are sustained by the Annual Fund. (The "Case for Support" can be accessed from the NAMI North Carolina web site, www.naminc.org, by clicking on "How You Can Help.")

Board of Advisors members, along with Executive Director Paul Bamford, will call on potential contributors and present the "Case for Support." Paul expressed NAMI’s deep appreciation for these members. "We have such a strong case to make—a very powerful story to tell. Untreated mental illness is so costly, and our programs to help those with illness, and their families, and society at large, are so effective. These Board members help us reach the folks who can respond with substantial financial support when they hear that story."

Every gift is important. The goal cannot be reached with just a few major gifts. In fact, the "Case for Support" projects an average gift of $242.25, with most gifts (95%) valued at less than $1,000.

"Lending financial support to NAMI North Carolina," Ken remarked, "means a lot, even when someone can’t make a large gift. When you make a financial contribution, you’re saying that you believe in what we’re doing. You believe in the cause so strongly that you’ll give money to it. Even if that may not be as much as someone else can give, your statement is vitally important."

Division Awards Funds for Jail Diversion Programs

According to the Bureau of Justice Statistics, an estimated 283,000 individuals with serious mental illness were in U.S. jails or prisons in 1999. In North Carolina, an estimated 5053 individuals are in prison with some sort of mental illness.

During 1997, 1251 individuals diagnosed with a mental illness were released from State Prison. According to the Department of Prisons, there is a 70% recidivism rate for this population, meaning that 875 of these individuals could be back in prison within three years.

In 1998, the NC Division of Mental Health, Developmental Disabilities and Substance Abuse Services researched this group of individuals and found that only 36% were in active treatment at community mental health centers.

"People with mental illness and substance abuse problems become repeat criminals because they are not receiving adequate treatment and support services in the community," said Ken Marsh, jail diversion project coordinator for the Division of MH/DD/SAS.

The Division of MH/DD/SAS, seeking to break this destructive cycle, has provided up to $60,000 to Area Mental Health Programs developing jail diversion programs. Funding was provided through federal mental health block grant funds. Interested Area Programs submitted proposals for review.

Those Area Programs whose jail diversion program proposals were funded are: Orange-Person-Chatham, CenterPoint, Southeastern, Guilford, Mecklenburg, and Rockingham. These programs join the Blue Ridge, Piedmont, Gaston-Lincoln, and New River Area Programs who received support for jail diversion programs last year.

NAMI North Carolina Director of Government Relations, Beth Melcher, participated in the review of proposals. "What is remarkable about the programs is the recognition of the multiple needs of this population," said Melcher. "The jail diversion programs will incorporate personnel from law enforcement, the courts, mental health and substance abuse services. Finally, there is a shared responsibility for responding to the needs of these often forgotten individuals."

Tracy Mixson, Working on Mountains

Tracy Mixson wants to climb mountains as well as move them. As an avid rock climber, one of her life goals is to make it to the top of Mt. McKinley. As a Western Carolina NAMI member, she has goals, too.

Tracy first heard of NAMI by reading about us in the Asheville Citizen-Times where she works. She was happy to see that a group was dealing with mental illness as it is--a neurobiological disorder instead of an emotional weakness. As a mental health consumer, she was glad to see that mental illness was being discussed without shame or stigma.

Tracy has found a group of like-minded people at NAMI Western Carolina. She has been able to learn more about her own illness and to help educate others. She admits that there is a lot to be done inside the organization, "We need to work on better communication between consumers and family members. We all have something to add."

What is her greatest accomplishment in the organization? "I don’t think it has happened yet," says Tracy. Others have acknowledged some of her many accomplishments. Tracey became NAMI North Carolina’s 1998 recipient of the media award.

Tracy has two major goals for NAMI. She wants to make NAMI a recognizable name. "I would like for my community to know what NAMI is and what it stands for. I don’t want to have to spell out National Alliance for the Mentally Ill forever. I hope that someday people will say ‘Oh yes, NAMI.’"

Her other goal is for consumers. She wants to do more to encourage them. Something big, she says. She wants to get out the message that it may be two steps forward and one step backward, but consumers shouldn’t ever give up.

Tracy Mixson embodies the spirit of up and coming NAMI members. She is working on mountains, both to climb and to move.

Doctors Try a Bold Move Against Schizophrenia

Treating people with drugs for a condition they do not yet have is a highly unusual approach in psychiatry, although it has a precedent in other areas of medicine, for example, the trial of tamoxifen as a prophylactic treatment for women at a high risk for breast cancer.

By comparing those who take antipsychotics with other high-risk subjects who do not, the researchers at the Yale School of Medicine and the University of Melbourne in Australia hope to find out if such early intervention can keep the illness at bay, and to learn more about the factors that predict vulnerability.

The researchers are using the newest antipsychotic drugs. These medications are much less likely to produce serious side effects than their predecessors. Still, the studies are controversial and have found no shortage of critics.

Dr. Thomas H. McGlashan, the director of the Yale study, said he decided to begin his prevention trial when he became convinced, after many years of working with patients suffering from schizophrenia, that "80 percent if not more of the damage is done before the disorder appears."

Some of the questions surrounding the controversy are:

• Possible stigma attached to being labeled as high risk for psychosis,
• Potential side effects of even the newest antipsychotic medications,
• Informed consent from under age individuals (whose parents gave consent),
• Labeling persons as pre-schizophrenic

"We need to go slowly and cautiously," said Dr. Laura Lee Hall, director of research for the National Alliance for the Mentally Ill. "On the one hand, I think it’s extremely important for us to experimentally determine if we can prevent the most disabling consequences of schizophrenia and bipolar illness. On the other hand, I certainly have concerns that we not needlessly medicate children that may not become sick."

Before beginning the prevention trial, the Australian researchers conducted a preliminary study to test the criteria they were using to determine high risk. Monitoring patients who met the criteria, they found that 40 percent went on to develop a psychotic illness – a high enough percentage, they felt, to warrant attempting to intervene.

NAMI Membership Dues Increase

Today a car costs what the average house did in the 1970s. We still buy cars, change the oil and buy gasoline. Inflation is just a fact of life. During the 16 years NAMI North Carolina has been in existence, the price of membership has changed only once. For the 21 years that NAMI has been in existence, its price of membership has changed only once.

For the last few years, NAMI has gotten a $7 portion of the dues each member or family has paid, and NAMI North Carolina has gotten $5. The rest has stayed with the affiliate. Your affiliate may have only charged $12 for memberships. If this is the case, no money from your membership dues stayed in your affiliate. If your affiliate charged $25, $13 stayed with your affiliate.

For people joining at the national or state level, both NAMI and NAMI North Carolina have been charging $25 for membership dues for as long as they have been in business. Now both have raised dues to $35, effective for the upcoming dues year, January 2001 to January 2002.

Who gets how much of your annual membership money?

Distribution of Membership Dues—

An annual membership is still a wonderful bargain. For $10 a year you and your entire family get the following from NAMI North Carolina.

• Helpline, which serves 2000 callers a year,

• A legislative representative on the state level,

• Technical assistance for our 30 affiliates,

• The Family-to-Family Program, which has educated 1500 people in 4 years,

• The Young Families Program, which has over 1000 subscribers to its quarterly Insights, and has made presentations to over 500 professionals about children's mental illnesses,

• Reduced registration fees for our two conferences each year,

• Clippings newsletter.

Clippings alone costs NAMI North Carolina $10 per member family, per year.

Membership in NAMI North Carolina is well worth the price.

Membership packets have been mailed to affiliate leaders and soon each affiliate will be gearing up for the 2001 membership renewal drive. Please renew your membership early.

Note: Open Door memberships remain at $3, or whatever amount you can pay. Membership will not be denied to anyone who wants to join.

Health Insurance May Be Improving–But Not For Persons With Mental Illness

The number of uninsured Americans is also growing. Individuals with major psychiatric illnesses are known to be at a high risk for poverty and unemployment and therefore less likely to be able to afford insurance (especially plans with higher costs). This population is the most vulnerable to becoming uninsured. While recent data show that the rate of health insurance loss in the general population has eased, this might not be the case for people with mental illness.

Healthcare for Communities, a national survey funded by the Robert Wood Johnson Foundation, was designed to track health care changes over time.

Fifteen thousand individuals were randomly selected to be interviewed regarding health care coverage. Eighteen months later, 9,585 were re-interviewed to assess change in insurance status.

In this study, twice as many individuals with mental health problems, compared to individuals without mental health problems, have recently become uninsured. At the same time, among individuals who were previously insured, fewer have recently become insured.

More people with mental disorders say that their insurance coverage is getting worse. More people with mental health disorders say it is harder to obtain good health care when needed. This trend holds even when looking only at people who had private insurance in both periods, so it is not simply due to the greater gap in being uninsured, but could be due to other trends such as moving into more extensively managed mental health care.

The study confirms that the concerns of getting good health care are particularly acute for people with mental illness. This population experiences increased burdens of uninsurance and deteriorating access to quality care.