February 2001

 News Flash!! Governor Mike Easley has named

If you’re new to NAMI North Carolina, welcome from our Board, staff, and wonderful volunteers. If you’re rejoining, welcome back! We begin our new year with a review of the many programs and resources available to the consumers and families of NAMI North Carolina, for both new members and old.

Support: For many of us, NAMI begins with the support we find in our local affiliate, whether or not it has an organized support meeting with a trained facilitator. There is help just belonging to a group of people who have "been there and done that" and who know what you mean when you talk about the roller coaster of hope and despair, the changing diagnosis, the problems with the system, and on and on. There are 32 local NAMI affiliates in North Carolina, and more under development: contact names and phone numbers are available on the website (www.naminc.org), or by calling the Helpline (800-451-9682).

Education: Speaking of the web site and the Helpline, our educational program begins with them, because people come to NAMI through these doors. A recent report to our Board from Rich Greb, who helped develop the web site, indicates an average of 95 visits a day during a recent test week, which projects to 34,000 visits a year. Last year our Helpline got 2,177 calls-—an increase of 30% over the previous year’s total. In response we sent out 6,874 fliers, brochures, articles and other educational material. Our comprehensive Help Book remains an extraordinarily valuable resource for our members and for other audiences as well. In December, copies were distributed to professionals attending an Employee Assistance Program Association meeting in Charlotte, and very enthusiastic comments were received in return. Our two annual conferences and Clippings have proven to be popular because of the solid information they provide.

Advocacy: The year 2000 brought a quantum leap when our former Executive Director, Dr. Beth Melcher, became our Director of Government Relations and able to focus entirely on advocacy. Beth enjoys great respect in the legislative and executive branches, and achieved substantial results in last year’s short session. The current budget crunch presents a great challenge, but we’re well equipped to face it!

Whether you’re a new member or an "old-timer," NAMI North Carolina has a lot to offer!

An exciting program has been planned for the NAMI North Carolina Spring Conference, which will be held at the Sheraton Imperial in Research Triangle Park, on April 20 and 21, 2001. Featured will be:

• Dr. Jeffrey Lieberman, Research Director at the UNC-Chapel Hill Department of Psychiatry, recently featured in the Discovery Channel "Schizophrenia: Stolen Minds, Stolen Lives" program and honored as "Tar Heel of the Week" by the News and Observer.
• Dr. Xavier Amador, Chair of the Psychology Department at Columbia University and author of I Am Not Sick, I Don’t Need Help! (2000) and When Someone You Love Is Depressed: How to Help Your Loved One Without Losing Yourself (1996).
• Dr. Jean A. Frazier, Director of Child Outpatient Program, McLean Hospital in Belmont, MA and Assistant Professor of Psychiatry, Harvard University Medical School.

We have also invited Governor Mike Easley to address our annual Awards Lunch.

As usual there will be a rich variety of workshops, a Friday evening reception, and plenty of opportunity for meeting old and new NAMI friends and colleagues!

Mark your calendar now and plan to attend. See you there!

On Saturday, April 21, at the NAMI North Carolina Spring Conference, a special track designed for Young Families and others particularly concerned with children and adolescents with serious emotional disorders, will be presented. The track will include:

I am teaching Family-to-Family for the very first time in spite of many years of family involvement with mental illness. As I looked at the faces of those gathered around the table, there is incredible, palpable pain coupled perhaps with a smidgen of hope that somehow by just coming, there will be some answers. Those who have recently learned the devastating diagnosis for someone they love are quite literally still in shock and unsure of what the future holds. Others have coped over the years with someone struggling with a severe brain disorder that never goes away and a future still filled with uncertainty.

Recently I have represented NAMI North Carolina on the Governance sub-committee of the Legislative Oversight Committee, whose task is to make recommendations for reform of the mental health system to the General Assembly. In the evening of the same day that I had attended a committee meeting, I taught my first Family-to-Family class.

The contrasts were stark. The language and discussion in the committee meeting focused on county requirements for becoming part of a reformed system of care. The talk was of shared fiscal responsibility, core services, targeted services and the need to re-invest future savings in more and better care.

The language and discussion in the Family-to-Family group were of grief and loss and bewilderment and expectations and the future. It was almost a surreal experience, to commute between these two worlds. Yet those families, and all the others like them across our state, are the very reason that NAMI North Carolina exists and must remain strong.

As an organization, it is our responsibility to bring the reality of these terrible brain disorders to the attention of those who hold the power and the purse strings in an effort to make things better. That’s our job.

The Joint Legislative Committee on MH/DD/SA Reform was appointed in October of 2000 to initiate and oversee the reform of the public mental health system over the next five years. With the new session of the General Assembly just convening, where are we and where might we be headed? Here is a summary of what has taken place in the subcommittees over the past three months.

This subcommittee is charged with proposing changes to the governance and structure of the public system at the state and local levels. After reviewing the present system, the Auditor's findings, and models in other states, subcommittee members voted to support a county based model as recommended in the auditor's report. Subsequent meetings worked on expectations and responsibilities of the state and counties that are being crafted into draft legislation. The major changes proposed are:

• Counties would be responsible for public services in the area of the county program and would need to meet requirements to be "certified" by the state. Counties would have to submit a "business plan" on how they would meet requirements. Requirements and incentives are in place to encourage the consolidation of counties into multi-county programs with a lead or "administering" county responsible for carrying out the requirements for local management.
• The state’s powers and duties would expand to include required statewide planning, review and approval of county business plans, a comprehensive monitoring system, and technical assistance.
• The composition of area boards would generally remain the same. Responsibilities of the boards would be the same except that the authority to enter into contracts, approve budgets, and hire/fire a director would be shifted to the counties.
• An Ombudsman Program would be created at both the state and local level. The program would function to review quality of care complaints made by clients/families, analyze and monitor data relating to complaints and concerns about care, and at the local level promote involvement of consumers and families and serve as a liaison on behalf of consumers and families with facility administration.

Much more work needs to be done and the draft legislation will undergo many revisions. NAMI North Carolina has been an active participant and will continue to provide feedback and input.

This subcommittee is charged with estimating funds needed to implement reform and provide an estimate of savings in state funds. It has focused on administrative costs, coordination, and regulations with the underlying theme that, in combination, all of these things result in less money going to services. This committee is waiting to get direction from other committees before it can take substantive action.

This subcommittee is charged with determining the feasibility and impact of and best methods for downsizing the State’s four psychiatric hospitals. Committee members have been very concerned about the physical condition of the hospitals. There also seems to be a recognition that role of the hospitals and the populations they serve need to be more clearly defined in order to target resources and effective programming.

This subcommittee is charged with how reform will impact the quality of services and ensure ongoing quality review and improvements, recommend service benefit packages, and take into account the impact of the Olmstead decision. The subcommittee has identified services that should be available to everyone. These services are:

• Screening and clinical assessment,

• Emergency Services to include an array of services/interventions to prevent a more significant emergency, transportation other than the sheriff for assessment, and perhaps mobile teams or crisis centers,

• Detoxification on demand,

• Case support and monitoring beyond referral,

• Prevention, consultation and education.

The subcommittee also has considered the needs of "targeted populations," including adults with serious and persistent mental illness, children with serious emotional disorders, and individuals with multiple diagnoses. Initial discussions have focused on the services these populations would require: ACT teams; psychosocial rehabilitation; substance abuse treatment; and education/support services for families. The idea of incorporating service expectations or outcomes within service definitions was also presented.

This subcommittee is charged with reviewing and synthesizing the findings and recommendations on DD and incorporating the DD study upon its completion. The Department of Health and Human Services has presented a recommendation for a separate Division of Developmental Disabilities but the subcommittee took no action. Co-chair Rep. Beverly Earle indicated that a decision on this issue should be made soon since it will determine the direction of future discussions. The next meeting of this subcommittee is scheduled for February 8th and it is likely that this issue will be a primary focus.

With each meeting it becomes more apparent what a huge job this reform is. But we are only three months into a five-year reform process and positive discussion is occurring. With the convening of the General Assembly, it is likely that the work of the subcommittees will slow dramatically for the next six months. Some legislation will be introduced but it is still to early to know exactly what it will look like.

The reform process could be helped immensely by the incoming Secretary and Division Director. They could enable some reform initiatives through bureaucratic and policy directives much faster than the legislature can act. A supportive and coordinated effort will be necessary to ensure positive reform.

Schizophrenia is a difficult disease to diagnose, and it often goes undiagnosed for years, says Tony Cerenzia, president of the Schizophrenia Society of Canada, who is familiar with the Israeli findings in the current issue of the Proceedings of the National Academy of Sciences. "The longer people go untreated, the worse the prognosis and the worse the outcome. And if an early and accurate diagnosis could be made then [the discovery] is of significant importance," says Cerenzia.

Schizophrenia, which causes erratic behavior, breaks with reality, delusions and other symptoms, is believed to be at least partly linked to overzealous activity of dopamine. Both autopsies and brain scans of schizophrenic patients have turned up abnormally high numbers of the receptors that recognize this molecule, which helps neurons "talk" to each other.

In theory, scientists could test for dopamine receptors, but the tiny sites simply are too elusive for current technology to detect with consistency.

However, researchers have found that patients with Parkinson's disease—–a disorder that also involves a dopamine problem—–may have unusually high levels of dopamine receptors on their lymphocytes, a type of white blood cell enrolled in the immune response.

In the latest work, led by Sara Fuchs of the Weizmann Institute of Science in Rehovot, Israel, the researchers looked for variations in the presence of dopamine receptors expressed on the outside of lymphocytes in 14 schizophrenic patients, some of whom had received drug treatment for their disorder.

Identifying receptors on lymphocytes is too difficult for widespread testing, but Fuchs' group got around that hurdle by measuring not the receptors themselves but a genetic footprint of the cellular stage when the docking sites are being made. This molecule, called messenger RNA (mRNA), is easily amplified.

Fuchs' group found that patients with the disorder had levels of mRNA for a specific dopamine receptor called D3 that were 3.5 times greater, on average, than normal. D3 was higher in schizophrenics regardless of whether they had been taking drugs to control the disease, suggesting that the increase wasn't the result of treatment.

"Our findings strongly suggest that [the receptors] may function as convenient and reliable peripheral markers for schizophrenia and thus assist in the early diagnosis (which is frequently unclear) and possible follow-up of the illness. Many consider that more optimal management at an early stage of the illness may alter its course," the researchers write.

However, Fuchs says whether the presence of extra dopamine receptors on lymphocytes truly indicates more of those sites in the brain, is unclear. "I would like to think that maybe the level of dopamine receptors in lymphocytes may reflect the situation in the brain, but we have no evidence of this whatsoever," she says.

Fuchs and her colleagues now will look for dopamine receptor differences in families with schizophrenic members. Having a close relative with the disorder ups one's risk of also developing it ten-fold.

But she's wary of what she might find. "I think to myself, if you do find that there is a brother with an elevated level of dopamine receptors, would you tell him, 'Beware, you are going to be sick?' I don't know," she says.

If the receptor test does ultimately prove useful, it wouldn't likely become a universal screening tool, Fuchs says. Rather, doctors would likely call on it only in people at heightened risk of schizophrenia.

Olmstead in North Carolina

The NC Department of Health and Human Services is working to ensure compliance with the US Supreme Court’s Olmstead decision. In that case, the court decided that inappropriate institutionalization of a person with a mental disability may be discrimination under the Americans with Disabilities Act. An Interim Plan for North Carolina’s compliance with Olmstead has been developed and is available for comment.

DHHS has set up a web site (www.dhhs.state.nc.us/docs/olmstead.htm#faqs) that contains the Interim Plan. Copies are available by contacting Doris Gilbert in the Secretary’s Office at 919/733-4534.

Public comments are being solicited through February for consideration in the final plan revision. Comments can be sent to Doris Gilbert at 2001 Mail Service Center, Raleigh 27699-2001 or by email to the address on the website.

The NC General Assembly web site (www.ncga.state.nc.us/) has links to information about the House and Senate, including daily calendars and audio from both chambers. Use the web site to find legislators’ addresses and phone numbers, and to search for bills and track their progress through the Legislature.

For information about a bill, contact the Legislative Library at 919/733-9390, or visit its website (www.ncga.state.nc.us/leglibrary/).

Senate Principal Clerk’s Office phone, 919/733-7761.

A citizen, group or legislator suggests a change in state law. A senator or representative writes legislation, referred to as a bill, and files it with the clerk of the Senate or House. The bill is introduced to the full body and sent to a committee for review.

There, the committee chairman may assign the bill to a subcommittee, where it could be rewritten or rejected. Or the full committee can review the bill and make changes known as amendments.

If the bill wins the committee’s approval, it is returned to the full chamber. Each bill must pass two votes in each chamber, and a majority of each house is required for approval. A bill can fail on either vote.

During the debate, legislators can offer amendments to the bill. Once all the amendments have been debated and voted on, then a vote on the bill is held. A second debate is held and more amendments can be offered. If a bill clears the final vote, known as the third reading, it is then sent to the other chamber for its consideration.

If the bill passes the other chamber, it becomes law unless the governor vetoes it.

According to a new study from the Institute of Psychiatry, schizophrenia affects the mental and physical well being of caregivers from its earliest stages. The findings, published in the December issue of the British Journal of Psychiatry, are being used by the researchers to develop new strategies to support carers to prevent them developing further mental illnesses.

Schizophrenia is a severe and often enduring mental illness. Since the Community Care Act in 1990, many people with schizophrenia are no longer in institutions but are cared for at home by their families. Previous research shows, however, that the stress of caring for someone with a severe mental illness can cause mental health problems in the carers themselves.

The current study investigated how the first stages of psychosis, usually the earliest symptom of schizophrenia, affected carers. The caregivers (mainly mothers of the person experiencing psychosis) were often very distressed by the symptoms even though many admitted that caring could also be rewarding.

Carers found that difficult behaviours—–such as moodiness, suspiciousness or embarrassing appearance—–and social withdrawal on the part of their relative was hardest to cope with. Many also had difficulties getting the help they needed from mental health services.

At this early stage of their relative's illness, researchers found that carers were no more likely than the general population to suffer from mental illness. But those carers who lived with their ill relative visited their GPs more than usual, suggesting that even in its earliest stages, psychosis can be stressful for carers and that if unchecked, it can develop into more serious illness.

Dr Tonmoy Sharma, who led the study, believes the study emphasizes the importance of providing support and care for the carers. "The basic question is, who cares for the carers? This study shows that even in the earliest stages, caregivers become very stressed as a result of living with someone suffering from psychosis.

"The NHS Plan now recognizes that carers should be given the support they deserve, especially because they may be at risk of illness themselves. We believe that with that effective support, it may be possible to prevent the mental illnesses in carers."

Coming Attractions

April 20-21

NAMI North Carolina Spring Conference,

Sheraton Imperial, Research Triangle Park,

May 8-9

North Carolina Guardianship Assn. Conference, Clemmons. Call (919)782-4632 or 1(800)662-8706

July 11-15

NAMI Convention, United By Hope...Working for Change, Washington, DC

Dorothy James’ son first became ill in the late 1970s. A friend helped her become involved with advocacy, and she attended one of the first NAMI conventions, which was held in California.

One of the most important line items in the NAMI North Carolina annual budget is our Affiliate Grant program. As this issue of Clippings goes to print, leaders in our newest affiliates are formulating plans and completing applications for these grants. The funds will help them strengthen their programs, advertise their services, or get approved for nonprofit status. Unlike most grant programs, ours doesn’t require a long track record or even that the affiliate be already incorporated or approved under §501(c)(3).

The grant program represents NAMI North Carolina at its best. We’re using the funds provided by our generous contributors—individuals as well as the older, more-established local affiliates—to build new grass roots in communities where they’re needed.

Growth for the sake of growth? Hardly.

We know that our local affiliates are the very heart and soul of NAMI. It’s there that the consumer or family member can find others who have "been there," who will sympathize and welcome them, who know that a brain disorder is no one’s fault., who will offer information and hope, who will help the newcomers access the system, who will enlist them in the fight to end discrimination, end the stigma, and advocate for the high-quality, no-eject continuum of care that should be readily available to every North Carolinian who needs it.

One of our wisest expenditures is for the seeds, the water, the fertilizer, the tools, to grow the grass roots.

Remember that the state office staff meets for 1-2 hours each week, usually on Monday mornings. If you call during this time, you will reach our voice mail system. Although it may encourage you to dial "0" for the operator, we don’t actually have one. Maybe someday!