It’s been a long, long time since a governor or lieutenant governor met with representatives of mental health, developmental disabilities, and substance abuse advocates, but that is exactly what happened on February 25.

A group of advocates, including NAMI North Carolina executive director Beth Melcher, met with Lieutenant Governor Wicker to address concerns and needs related to MH/DD/SA services. Lt. Gov. Wicker will be running for the office of Governor in the year 2000.

The group of advocates met with him to urge that addressing the need of persons with mental health, substance abuse, and developmental disabilities be a focus and message of his campaign. The Lt. Gov. was very attentive and interested. He offered the group an opportunity to have additional meetings with his campaign policy staff.

Senator John Edwards has moved to Washington. His new office in the Senate building is undergoing renovations, and he has just hired his legislative staff. Last week as I talked with the Raleigh nurse, Laurie Armstrong, who serves as Edwards’ assistant for health affairs, she assured me that Senator Edwards would be a friend of the mentally disabled—NAMI’s friend—because of his background as a lawyer defending the rights of persons disabled by accidents.

Thanks to the annual NAMI Legislative Conference, I had been thoroughly prepped about the current status of our issues before I spent that hour briefing Laurie. These are the same issues that we ask you to contact your Congressional delegation about. Laurie indicated they would like to hear from many of you—and often.

Work Incentives Improvement Act of 1999. This bill would permit SSDI beneficiaries to continue to receive Medicaid coverage, even if they earn more than the current limit of $500 a month, nor would employment be used as the basis for scheduling a review to see if they should lose their disability status. In addition, this bill would create a "ticket to work," a voucher that allows SSI and SSDI beneficiaries to choose the employment and rehabilitation provider they prefer. Currently, the only employment provider that is reimbursed by the government is Vocational Rehabilitation, a system built around persons with physical handicaps and geared toward short-term interventions to place individuals with mild disabilities in jobs they are already trained for.

The result is that persons with mental illness have their records closed by Vocational Rehabilitation the first time they are unable to sustain a job. Other venues, such as clubhouses and supportive job services do a better job of coaching and supporting persons with mental illness.

The work incentive bill nearly passed Congress last year. Now it seems to be on the fast track in the Senate, but will need some pushing in the House. Our Congressmen/women should hear from us that 85-90% of persons with SPMI are now unemployed, but 72% of people with disabilities, according to a recent Harris poll, would like to work. However, because of fear of losing their Medicaid or disability benefits before they are self-supporting, only 1% of SSDI beneficiaries leave Medicaid roles to work.

Funding for brain research and the state block grants to cover new PACT (Program for Assertive Community Treatment) teams. In this year of budget surplus, the President’s budget was disappointing in asking for only a 2.4% increase in funding for National Institute of Health research. The problem is that funding for our projects is in competition this year with funding for national defense (for which Clinton proposes the largest increase since the Cold War), since both must come from "discretionary funds."

Opponents of increased research funding argue that NIH got a huge increase of 15% last year and that it cannot effectively absorb another big infusion of funds. Our counter argument is that only 20% of NIH research proposals do get funded; Congress set a goal of doubling the federal biomedical research budget by the year 2005, and we need another infusion of funds to meet that goal. Our own stories can be convincing about the effectiveness of the research that led to the new atypical medications and how much we still need to know about brain disorders.

Funding for block grants to the states for mental health services has been frozen since 1992. In this year of budget surpluses, it is time to melt that ice to create in every state PACT teams, the wrap-around services that have proved so successful in keeping people out of the hospital. (Contact the state office for information about this new NAMI initiative.)

Funding for Supported Housing. One of the most successful programs providing money to build or rehab housing is HUD’s 811, which has taken successive cuts in the last few years. In another hit, public housing providers can now cut residents with mental illness out of federally funded

"elderly only" public housing, where they had been granted a proportion of the units.

In addition to more 811 funding, we need to advocate for a separate allocation for tenant-based rental assistance for non-elderly people with disabilities, who have been affected by this recent change. We also need to be aware that last year’s "Fair Housing Act," which will probably reappear this year, is an attempt to restrict, not enlarge, housing for persons with mental illness. The Act would have required notification of neighborhoods before a supported living facility could be opened, and it would limit "over concentration" of units in certain areas—not recognizing that "affordable" housing can exist only in those "over-built" areas.

A major talking point for our support of federal housing money is the extreme poverty of persons with mental illness. Persons on SSI receive only about 24% of the median income; rent for an efficiency apartment in 1990 would take 69% of that income. The mentally ill population is at the very bottom of poverty level. The problem is the very limited SUPPLY of rental homes or apartments that persons with mental illness can afford. Our local officials and Congressmen may not realize that the problem of homelessness is, in part, the result of a lack of affordable housing.

Many observers think there is a good chance that Congress may work across party lines to achieve some significant legislation this session to repair the image of the partisan impeachment trial.

NAMI legislative leaders urge advocates to contact members of their state’s congressional delegation to urge swift action on managed care patient protection legislation. Rather than advocate for any specific proposal, NAMI members are urged to focus on a few basic elements that must be included in any legislation Congress passes: binding third-party reviews, curb on restrictive formularies, ombudsmen programs for vulnerable consumers, etc. Access to treatment should be stressed as central to all of theses issues. Personal stories are particularly effective in bringing home the message of increasing access to quality care and enhancing accountability in managed care.

Now is the time to get in touch with your Congressmen/women and press these issues. The NAMI legislative staff urges that we advocate for increased appropriations with our Congressmen/women now and through June 30, the budget deadline. With over 400 new member families in NAMI North Carolina in the past six months, we are now better armed to make a difference than ever before.

Write your letter or make your call now—before you forget!

"Eighteen years ago, when I left law school and entered a psychiatric ward for the first of what would be many, many, many times, my parents had no idea of the dynamics of the illness from which I suffered. They felt the need to shield my brothers from what was happening to me, and a silence fell upon my parents and me about my bizarre and incomprehensible behavior. Thus began the enormous isolation that was to plague me for many years. It was bad enough that friends and lovers fell away, but what was really excruciating was that within my own family I was left alone to bear the burden of the strange psychotic world I kept going in and out of."

"My parents stuck by me...their ignorance of the true nature of the illness created enormous tension and stress within the household. Convinced that work would straighten me out, my parents urged me to take jobs...these attempts failed, bringing yet more despair and more guilt....My parents and I became an isolated trio of silence and pain. They had nowhere to turn and neither did I. There was unexpressed anger and pain on both sides."

For many years families have struggled with the challenge of defining and maintaining a healthy relationship with their loved one. This involves being able to set boundaries and limits that, oftentimes, are painful but helpful to their relative. How do I take care of myself and other family members when crisis strikes? Is there something that I did wrong to cause him/her to turn out this way? These are some of the most silently pondered questions that plague the minds of family members with a loved one diagnosed with serious psychiatric disabilities. These questions and many more can be answered throughout the free 12-week Family-to-Family class.

If you are interested in enrollment or teaching this class, please call Matisha Brown at the state office. The next Teacher Training will be held in Raleigh on April 16th - 18th. Help make a difference; call for your volunteer opportunity today!

Family-to-Family Coordinator

In response to the effort to redesign Dix Hospital, and ultimately all four state psychiatric hospitals, NAMI North Carolina surveyed its members to identify those design features considered most important for new hospitals. Specifically, we surveyed all members (consumer and family members) within the Dix catchment area. We also sent surveys to all NAMI North Carolina Board members and all affiliate presidents outside of the Dix area asking them to respond through input from their members.

The response was overwhelming. Of the 400 surveys sent, 150 were returned, a 38% response rate. Following are highlights from the results:

Families of children and adolescents with Serious Emotional Disabilities (SED) often tell us that schools are very slow to respond with appropriate services for their children. Now there is a way on the world wide web to report possible special education violations and remain anonymous. This web site was developed by Assistive and Adaptive Computing Techonology in Education with the hope that state and federal governments will use the website to educate themselves about the pervasive nature of these violations.

Go to http://at-advocacy.phillynews.com/data/violations2.html and choose "Feeling Powerless." You will have the option to submit your alleged violation by answering 11 questions. You can also review what other parents and care givers throughout the country have entered.

What follows are various web sites that offer information on mental illness in children and adolescents. You will find a variety of fact sheets, journal articles, the latest research findings and more on these sites. Happy surfing!

NAMI North Carolina held its phone-a-thon campaign on February 23 and 24, 1999. Ten dedicated volunteers helped raise $8,590 in pledges to NAMI North Carolina!

Thank you to the following who came out from the Durham affiliate on the first night: Christine McHugh, John Henry and Vera Pfifferling, J. Clinton Rogers and Shirley Strobel.

NAMI North Carolina depends greatly on its generous contributions to fund the many programs that help provide support, education and advocacy for persons experiencing mental illness.

NAMI North Carolina’s Leadership Academy was held February 26-28 at the Holiday Inn, Research Triangle Park. Twenty-two participants completed the training which was conducted by Jack Stringfellow and Jackie Chellew of NAMI West Virginia. Consumers and family members were trained to be effective advocates and to have an integral role in shaping mental health services. Four participants were trained to be "trainers" and will use this initial training session as a basis for expanding and developing future NAMI North Carolina leadership academies.

Comments from participants included "instructors worked so well with each other and with students...timely and important to both consumers and their families... instructors terrific...thorough and well presented!"

Obsessive Compulsive Disorder (OCD) is a potentially devastating illness, and is included as one of the five major mental illnesses. Obsessive Compulsive Disorder can be present by itself or found along with schizophrenia, bipolar, other anxiety disorders and is very commonly found in persons who are clinically depressed. OCD is usually treated with a combination of specific behavioral therapies and medications. It is important to note that many psychoactive medications are not likely to help OCD symptoms, but that a number of partially effective drugs have now been carefully evaluated. The treatment, however, for most OCD patients should involve the combination of behavior therapy with medications.

The six drugs that have been shown to be effective in double-blind studies include: Clomipramine (Anafranil), fluvoxamine (Luvox), fluoxetine (Prozac), sertraline (Zoloft), paroxetine (Paxil), and citalopram (Celexa). Anafranil has been around the longest and is the best studied throughout the world. There is growing evidence that the other drugs listed are as effective.

A number of disorders which are related to OCD, in their most severe form, such as compulsive gambling, sexual behaviors, trichotillomania (pulling one’s hair), body dysmorphic disorder, compulsive eating, nail biting, and compulsive spending may also be helped. More research is needed in this area to give firm recommendations.

NAMI North Carolina would like to thank all of its members, including our affiliate presidents, who have been distributing vouchers for Food Lion Community Way Days on April 26, 27 and 28, 1999.