Treatment and care for people living with mental illness can be better, and changes can be made if we work together. Find out more from organizations already involved with advocacy efforts and GET INVOLVED!
Visit the Links page and refer to the resources in the Advocacy category.
The book, Our Voices: First-Person Accounts of Schizophrenia is available for purchase through iuniverse.com and amazon.com. It is a good summary of how to begin to pursue advocacy. For additional inspiration, check out Rosalyn Carter's book written with Susan K. Golant and Kathryn E. Cade, Within Our Reach: Ending the Mental Health Crisis, 2010, Rodale, Inc.
Excerpt from our voices, p211-213
The mental health care system in the United States is frequently described to be "in crisis" or a "disaster." Looking backwards from the present to 30 years ago, experts have always used these same terms when describing inadequate government policies and legislation, lack of funding for treatment, research and essential programs for the mentally ill. Changing the system is a slow process and sometimes it appears to be "trial and error," always seeking "what works," in the best manner possible. Mental health reform is necessary at all levels—local,state and federal. What can you do now? Become an advocate; lobby for important legislation, fight stigma, and above all, VOTE!
Join private organizations that can help you advocate, educate and combat stigma. Fighting stigma creates the ability to make legislative changes. By altering public opinion and furthering the understanding of severe mental illness (including schizophrenia), we gain support for important bills and funding. These nonprofit organizations monitor primarily the news and entertainment industries. The National Alliance for the Mentally Ill (NAMI) at www.nami.org offers "stigma alerts" and helps show you how and with whom to take action. "Stigmabusters"allows members to report infractions against people with mental illness, physical as well as verbal. There are other agencies, such as the Carter Center, whose primary goal is to combat the stigma of mental illness. Some of the solutions and goals of these organizations range from national advertisements, distribution and information, education in schools to simply explaining mental illness to your children.
Families with a member who has severe mental illness are the usual spokespeople. E. Fuller Torrey, in Surviving Schizophrenia, points out that advocacy from patients themselves adds credibility to the causes, especially when giving feedback about what services are effective and how to improve them. His other three principles to advocacy are: relying on what is factual and not emotional, putting everything in writing (letters, email), meeting with officials, sending copies to all concerned. Also, judging public officials by their actions, not by what they promise.
There is one principal E. Fuller Torrey didn't list: become an expert. Educate, read and research. You may wish to focus on only one area of specialty or adopt a sound opinion from a real expert in one of the pertaining fields.
How do I go about it? Where to start? It's easier than you think, and you don't need to spend that much time. Most activity in mental health reform occurs at the state level. The Treatment Advocacy Center (TAC), a non-profit organization, has a detailed website of databases that contain all laws pertaining to mental illness and are searchable by state. A detailed and extensive website, TAC gives comments on public policy, news and alerts. They monitor what is printed and notify you when legislation in your state will be voted on. You can look up who is representing you by zip code as well as the current legislative calendar.
NAMI also has website for all three levels—national, state and local. Go to the homepage at www.nami.org and click on "action." They have national legislative alerts and updates, and a section called "Megavote" that monitors how your Representative or Senator votes. They have tips on writing letters and making phone calls to your representatives.You can even email your legislators from this website. You can't get it any easier than that.
The North Carolina NAMI (www.naminc.org) even has the entire exposé series of articles written and researched by the News and Observer in Raleigh. These articles triggered the "reform of the Mental Health system 2000." This is an exciting period in mental health advocacy in North Carolina, after much scandal. The NAMI state-level website has current legislative issues and news alerts as well.
The local individual NAMI websites vary—some are impressive, some are less than adequate for advocacy. I would suggest you consult a social worker at your local state hospital or mental health facility. Perhaps they can add you to an organized list of people alerted and notified by email when local advocacy is needed. It doesn't take long to write a short email and send it to everyone on a list provided for you.
Log on to NCMentalHealthVote.org or a similar website for your state. Vote for who you believe is right!
Vote because together we are strong.
Above all, just vote!
About 1 of every 100 people develops schizophrenia; 1 of every 50 develops some other psychotic illness. People with relatives who have schizophrenia have a slightly greater risk than others: the closer the relative, the greater the risk. You are at highest risk if you have an identical twin who has it. However, not all twins who have identical genes share this illness, so that proves that genes may play a role, but they are not the only factor responsible for the illness. If it were just a matter of genes, then if one identical twin got schizophrenia, the other always would too; in reality, this only happens in about half the cases.
Other factors that may play a role in who gets or doesn't get the illness are changes in the development of the brain in utero due to exposure to viruses, toxins, or lack of nutrients at critical periods. Stressors in early adulthood can play a role, too.
We still don't completely understand what causes schizophrenia. Many researchers think it may actually be different illnesses, with different origins, lumped together under one diagnostic label. Until we understand all this better, it will continue to be very hard to determine the likelihood that any given individual will get the illness.
Founded in January 2009, the Center for Excellence in Community Mental Health is part of the Department of Psychiatry in the School of Medicine at the University of North Carolina at Chapel Hill. Addressing quality of care and workforce development issues in North Carolina's mental health system, the Center and its clinical programs are supported by a three-year grant from The Duke Endowment, as well as Cross Area Services Program (CASP)
funds. The program operates in conjunction with multiple university, state, and community-based partners.
© 2010 UNC CMH
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