The KeyFall 2002 • Vol. 7, No. 2 “Knowledge is the key to open new doors”
N ATIONAL M ENTAL H EALTH C ONSUMERS’ SELF-HELP C LEARINGHOUSE N EWSLETTER
1211 Chestnut Street, Suite 1207, Philadelphia, PA 19107 www.mhselfhelp.org (800) 553-4KEY [email protected]
NEW FREEDOM COMMISSION SOLICITS INPUT FROM CONSUMERS/SURVIVORS
new advisory group created by three consumer-run national technical health system to recovery-based services President George W. Bush to assistance centers that support the con- guided by hope, empowerment, and maxi- ensure “that the cracks are sumer/survivor self-help movement. mal involvement of consumers/survivors closed” in the mental health At the New Freedom Commission’s first at the federal, state, and local levels in Asystem and other systems serving people meeting, on June 18-19 at the Ritz Carlton areas of policy, services, training, and who have mental illnesses gives con- Hotel in Pentagon City, Va., several people research.” sumers/survivors and other mental health spoke about the importance of incorporat- Among the other movement activists stakeholders a chance to provide informa- ing the points of view of those who have who spoke was Lawrence Plumlee, M.D., tion and advice to those who potentially “been there.” representing Support Coalition have the President’s ear. “IAPSRS deeply regrets that the International. Plumlee, formerly on the On April 29, 2002, Bush talked about Commission membership is not more rep- faculty of Johns Hopkins Medical School, closing the cracks in the system as he resentative of people who have noted the importance of informed consent. announced the creation of The President’s experienced firsthand the failures, and the “Consumers should have full disclosure New Freedom Commission on Mental successes, of the public mental health about the risks of proposed psychiatric Health. Its goal is “to recommend system,” said Paul Seifert, director of treatments, and choice from a range of improvements to enable adults with a seri- government affairs for the International alternatives,” he said. ous mental illness and children with a Association of Psychosocial Rehabilita- ...continued on p.10 serious emotional disturbance to live, tion Services (IAPSRS). “The Commission work, learn, and participate fully in their can and should make up for this short- communities.” coming by inviting consumer input and In This Issue The Commission, chaired by Michael F. participation at every step.” Message from Hogan, Ph.D., director of the Ohio Toward this end, Fisher, the only com- Program Director...... 2 Department of Mental Health, includes missioner who has identified himself as New Anti-discrimination/ mental health professionals, administra- having been diagnosed with a mental ill- stigma Resource...... 3 tors, academics, researchers, and repre- ness, has been actively seeking input from sentatives drawn from the executive, leg- a broad array of consumer/survivor LGBT Movement ...... 4 islative, and judicial branches of the fed- activists. “I am making every effort to be Clearinghouse to Launch eral and state governments. Among its as inclusive and informative as possible Regional Branch Office ...... 7 members are Charles G. Curie, M.A., because I see ‘nothing about us without us’ New Freedom Testimony ...... 8 A.C.S.W., administrator of the Substance as a central value of our movement,” he Abuse and Mental Health Services wrote in a recent e-mail. 2 NIMH Studies ...... 10 Administration (ex-officio); and Daniel In his opening remarks Fisher said, “I Research Tips for Fisher, M.D., Ph.D., co-director of the would like to see this commission recom- Proposal Writers ...... 11 National Empowerment Center, one of the mend the transformation of the mental Page 2 • National Mental Health Consumers’ Self-Help Clearinghouse • Fall 2002
Message from the Program Director CONSUMER MOVEMENT CAN OVERCOME HARD TIMES veryone . . . is entitled to . . . the tunity for disadvantaged minority groups economic, social and cultural BY TOM LEIBFRIED such as African-Americans, Spanish- rights indispensable for his speaking people, and women. They dignity and the free develop- should do the same for people who have Ement of his personality.” — Article psychiatric disabilities. The U.N. 22, Universal Declaration of Human Declaration of Human Rights states that Rights, adopted by the U.N. General governments must recognize that Assembly in 1948 without dissent “[e]veryone has the right to a standard of
NEW RESOURCE CENTER TO ADDRESS DISCRIMINATION AND STIGMA OPENS
he Center for Mental Health year, estimates indicate that half of peo- ing services of Dr. Otto Wahl, a prominent Services of the Substance ple with severe mental illnesses received researcher and advocate,” Rogers said. Dr. Abuse and Mental Health no treatment in the past 12 months. Wahl, a clinical psychologist and professor Services Administration rec- Aside from keeping people from seek- of psychology at George Mason University Tently created a resource center to coun- ing help, the consequences of discrimi- in Fairfax, Va., has published and lectured teract the discrimination and stigma nation and stigma for adults who have extensively on the subject of stigma. “In that accompany the experience of men- mental illnesses include lowered self- addition, Vanguard Communications, a tal illness. esteem; disrupted family relationships; Washington, D.C., consulting firm that The CMHS Resource Center to and increased difficulty in building con- develops and implements advocacy cam- Address Discrimination and Stigma nections in the community, securing paigns around such issues as the environ- (ADS Center) is operated by the Mental housing, and obtaining employment. ment, public education, health care, and Health Association of Southeastern Children who experience discrimination children and families, is providing its Pennsylvania through a contract with and stigma may be scarred for life. expertise in communications and materials The Gallup Organization, with support development,” she said. from the Substance Abuse and Mental A Wealth of Skills Health Services Administration of the Rogers said that, in developing the pro- Other CMHS Efforts U.S. Department of Health and Human ject, she is excited to be able to draw upon CMHS created the ADS Center as a Services. The ADS Center was estab- a wealth of skills and experience available next step following a number of CMHS lished to help mental health consumers, through the ADS Center Steering activities aimed at eradicating discrim- family members, advocates, managed Committee and consultants. “The ADS ination and stigma. care organizations, providers, local com- Center’s distinguished Steering Committee In March 2001, CMHS sponsored the munities, and states design, implement consists of 10 people who represent a first National Mental Health Symposium to and operate programs and campaigns to broad array of perspectives in the mental Address Discrimination and Stigma, reduce stigma, and the discrimination health arena,” she continued. The Steering bringing over 400 experts together to and prejudice it engenders. The ultimate Committee members (alphabetically) are review research findings and best prac- goal of the ADS Center is to enhance Laurie Ahern, co-director, National tices in this area. CMHS also published mental health consumer independence Empowerment Center; Larry Belcher, “Challenging Stereotypes: An Action and community participation. director, CONTAC; Richard Birkel, Ph.D., Guide,” which provides a step-by-step “The ADS Center provides specific executive director, NAMI; Patrick Cody, approach on how to respond to stigma in resources and information for people or until recently vice president of communi- the media and elsewhere, including sam- organizations interested in combating cations, National Mental Health ple letters, resource listings, and strategies. discrimination and stigma,” said Susan Association, and now establishing an office An Anti-Stigma Kit consisting of a poster Rogers, the new Center’s project director. of Freedom From Fear in the nation’s and other material is also available from “The ADS Center also offers information capital; Patrick Corrigan, Ph.D., the National Mental Health Information about available publications, events, and director, Chicago Consortium for Stigma Center at 1-800-789-2647, or its Web site: issues of relevance.” A Web site is cur- Research, University of Chicago; Laurene www.mentalhealth.org/stigma. rently under construction, and a semi- Finley, Ph.D., Multicultural Training In addition to Susan Rogers, the ADS annual newsletter and a Speakers’ and Research Institute, Temple Center is staffed by a bilingual Bureau are planned, she added. University; David Gonzalez, founder, (English/Spanish) information specialist, “Mental Health: A Report of the www.seecinemania.com; Al Guida, mental Samuel Rosario, who can be reached at Surgeon General” identified stigma as health policy consultant; Carolyn Nava, 1-800-540-0320 Monday through Friday, one of the major barriers that discourage senior family adviser, Technical 9 a.m. to 5 p.m. Eastern Time; its adults with mental illnesses, and the Assistance Partnership, and staff, webmaster, Bill Krum, director of families of children and adolescents with Federation of Families for Children’s MHASP’s Division of Peer Support and serious emotional disorders, from seek- Mental Health; and James Radack, vice Community Education; and consultant ing treatment, Rogers noted. While president of public education, National Jennifer Bofinger, also consultant to approximately one in five Americans Mental Health Association. Pennsylvania’s anti-discrimination campaign lives with a mental disorder in any given “We are also thrilled to have the consult- www.openmindsopendoors.com. Page 4 • National Mental Health Consumers’ Self-Help Clearinghouse • Fall 2002
GROWTH OF LGBT CONSUMER/SURVIVOR MOVEMENT SLOW BUT SURE small number of determined announce, “I am a homosexual. I am a advocates have been working BY SUSAN ROGERS psychiatrist. I . . . am a member of the for more than a decade to APA.” Further, he said, “I could be any forge a movement within a with psychiatric labels in the sexual one of more than a hundred [gay] psychi- Amovement. These are lesbian, gay, minority community and, likewise, of atrists registered at this convention.” bisexual and transgendered (LGBT) sexual minority people in the mental Unfortunately, Johnson said, many gay consumer/survivor activists, who have health consumer/survivor community.” professionals contribute to the problems not one but two closets to come out of. There is general agreement that such confronting their LGBT clients by stay- The LGBT consumer/survivor move- acceptance and affirmation does not yet ing in the closet. “While there are many ment is small, in part because of the exist. gays and lesbians in influential clinical risks of coming out, said Alicia Lucksted, Ph.D., of and administrative positions in commu- one movement leader, the University of Maryland nity mental health, I suspect many don’t Steve Holochuck of Center for Mental Health feel secure enough in their positions to Massachusetts. “One of Services Research, addressed risk advocating for better services for these identities” — this problem in a monograph their sexual minority community for fear homosexual or mentally entitled “Experiences of LGBT of political consequences,” he said. ill — “is hard enough,” people with Serious Mental The fact that homosexuality used to he said. “When you Illnesses: Raising Issues.” In be a psychiatric diagnosis is at the root have both of them, it’s a the monograph’s summary, of some of the discrimination and prej- particularly heavy load Lucksted, a lesbian and the udice that plague LGBT consumers, to carry. And then to be recipient of the 1999 Early Holochuck noted. “It shows some of the politically active and Career Research Award of the arbitrariness of psychiatry that the APA open about both of them International Association of takes a vote and then millions of — that’s a big thing to BGLT activist Mark Davis Psychosocial Rehabilitation American homosexuals are instanta- take on.” Services (IAPSRS), notes the neously cured. It shows the politics of Nevertheless, some intrepid leaders homophobia and ignorance on the part of pathologizing and labeling.” are taking it on. The initiative began in many mental health services staff. These politics are, in part, what the the ’70s with gay and lesbian caucuses Such a negative climate “certainly is movement seeks to change. “The two at the International Conferences on there,” said David Johnson, a gay psy- halves of the struggle are the heterosex- Human Rights and Against Psychiatric chiatrist in Lancaster, Pa. “My clients ism in the consumer/survivor move- Oppression, which preceded the national can go to a straight mental health prac- ment and the [mental health] system, Alternatives conferences. It continued at titioner and sometimes get very poor and the oppression of people with psy- Alternatives ’89 and ’90. But it got a sec- treatment,” he said. “For example, a lot chiatric labels that exists in the [LGBT] ond wind at Alternatives ’91 in Berkeley, of gay people get diagnosed as being community,” Holochuck said. Calif., Holochuck recalled. It was there obsessive-compulsive because of their “We’ve heard some heartrending sto- that the Fruit and Nut Bar — a loosely sex drive. They’re treated as having ries,” he continued. “One person who is a organized national network of gay male, paraphilia, an abnormal sex drive that major leader in his state movement, and lesbian, bisexual and transgendered con- might include pedophilia and fetishism. feels that he has to be in the closet, said sumers and survivors — was founded. Especially in conservative areas, a lot that things are said in front of him in a The following year, at Alternatives of [professionals] still think same-sex movement environment and in program ’92 in Philadelphia, the Fruit and Nut desire is an illness.” environments with consumers/survivors Bar declared its mission: “to build This is in spite of the fact that, in 1973, that are very heterosexist and homopho- mutual support among people who have the American Psychiatric Association bic. This is very painful to him.” this [LGBT] identity and make the men- declassified homosexuality as an illness Holochuck said he has also “had people tal health system more responsive to — at least in part due to the courage of say things to me that have left me aghast.” our needs and preferences.” The state- Philadelphia psychiatrist John Fryer. At That’s why he makes no judgments ment continued: “We desire to build an the 1972 APA conference in Dallas, about consumer/survivor movement acceptance and affirmation of people Fryer appeared in disguise on a panel to leaders who choose not to make their Fall 2002 • National Mental Health Consumers’ Self-Help Clearinghouse • Page 5
Transgendered Peers Face Additional Hardships
If lesbians, gay men and bisexuals suffer discrimination and prejudice, that’s nothing to what transgendered consumers/survivors have to face, even from their peers. “There is division among [LGBT] consumers/survivors,” said Paula Lafferty, founder of Hearts & Ears, Inc., an LGBT consumer/survivor-run drop-in center in Baltimore. “I think it’s primarily between GLB and transgendered people.” This reflects the division among lesbians, gay men, bisexuals and transgendered peo- ple in the general population, she added. As an example, she recounts the struggle to pass an anti-discrimination bill in Maryland that gives protection in the areas of housing and employment to gay men, lesbians and bisexuals but not to transgendered people. Steve Holochuck speaking at the “There are many gays, lesbians and bisexuals who strongly wanted to Empowerment Center of Western include transgendered folk on the bill,” she recalled. “But the Legislature Massachusetts, a peer-run agency approached Free State Justice [FSJ], the political organization that was push- ing the bill through, and said that the governor would not sign the bill if trans- minority sexual status known. “People gendered people were on it, and FSJ agreed to take them off the bill. In the should do what they’re comfortable words of [Maryland] transgendered activist Courtney Murphy, ‘Now the with,” he said. However, he added: Legislature thinks that they have addressed the issue and they won’t think of “People who are out and visible, espe- transgendered civil rights for another eight or 10 years. Free State Justice cially if they have leadership skills, should have worked to pass the bill with transgendered people included until would be making a contribution. And I it got through.’ “ certainly have been saddened by the Since the bill’s passage, however, FSJ has made amends with many of the failure of some people to come forward.” politically active transgendered population, Lafferty said. They have formed Another obstacle to LGBT con- and fund a committee called Marylanders Advocating Toward Transgender sumer/survivor organizing is that the Equal Rights (MATTER), which Murphy co-chairs. sexual and gender minority movements In spite of its denouement, the story illustrates the division between trans- are not unified, according to Mark gendered people and gay men, lesbians and bisexuals. But, clearly, this is Davis of Philadelphia, a nationally not the sole source of difficulty for transgendered individuals. known leader of the movement that he “I think the issues that transgendered people have are so much more than the prefers to refer to alphabetically as issues that GLB people have,” Lafferty added. For example, she said, finding hous- BGLT. “Gay men and lesbians have dif- ing becomes more complicated. ferent agendas and sometimes separate “There is someone in our group who was homeless for more than five themselves from bisexual and transgen- months and she stayed in abandoned housing because shelters don’t know dered people. Each culture — diverse what to do with transgendered people,” she recalled. “There is another within itself — has totally different [transgendered] person in the group — female to male — who is homeless, health and psychosocial needs,” he and is not staying in housing because they’ll put him in with women, and that said. (See sidebar on Page 5.) gives him the creeps. This person passes for male, does not talk like a Davis believes it is a problem that woman, but his legal name is still the name given to him at birth. . . . So there “BGLT initiatives are being lumped are 10 times more problems [confronting transgendered people].” together with overall cultural compe- A Hearts & Ears conference, to be held in October 2002, will include a tence [efforts], which is a threat to the panel focusing on the experiences and needs of transgendered people who [other] minority groups that are umbrel- receive services in the public mental health system, from both a consumer and laed under a cultural competence agen- provider perspective. da. There seems to be no increase in However, there are signs that the situation may be evolving. For example, resources, so the BGLT consumer/sur- a recent article on the Fox News Channel Web site quoted Paisley Currah, vivor movement is viewed as a financial associate professor of political science at the City University of New York and threat because of having to share the a board member of the Transgender Law and Policy Institute: “[Transgender pie with more people.” law is] totally exploding — in law, the amount of litigation, the laws passed, Yet another barrier is the intense homo- the law reviews written. Transgendered people have become more orga- phobia that exists among some racial and nized and [are] moving beyond merely a support system for each other to ethnic minority groups. Cookie Gant of actually fighting for their rights.” — Susan Rogers ...continued on p.6 Page 6 • National Mental Health Consumers’ Self-Help Clearinghouse • Fall 2002
...continued from p.5 2002 Consumer Advocate award. derogatory about LGBTs and the sexual- Michigan, an African-American woman Although Compton is one of the select ity of their clients in general,” she said. and a lesbian who has been involved in group of consumer/survivor leaders who “Key staff were lesbian, which helped a the consumer/survivor movement since are openly gay, he doesn’t “get on a soap- lot. There wasn’t much homophobia 1985, said that the prejudice against box” about it, he said. In the three min- directed specifically at us. However, homosexuality in the African-American utes he had to speak at the NMHA con- almost all of the staff were derogatory community is so bad that “given a choice ference, he didn’t mention he was gay, toward consumers, which was painful, of being gay or having a mental illness, “because I thought it was more important frustrating, and angering. More than any- [African-Americans] would choose having to talk about outpatient commitment.” thing, that was why we left,” she said. a mental illness.” Another leader is Bert Coffman, who Saying that she is “going to try my hard- Thus it is no surprise that the LGBT founded the Zappalorti Society in New est to connect people throughout the consumer/survivor movement has had York City in 1992, in memory of Jimmy nation,” Lafferty noted that Hearts & Ears what Bill Compton, a movement leader Zappalorti, a gay Vietnam veteran with a is planning a conference in October 2002, from Southern California, calls “a long mental disability who was murdered on which will include a panel of LGBT move- incubation period.” In fact, when asked January 23, 1990. The two perpetrators ment veterans from around the U.S. about the LGBT consumer/survivor move- received life sentences, said Coffman. One such movement veteran, Mark ment, Davis quipped, “What movement?” The group meets on Saturdays at the Gay Davis, noted the importance of integrat- While praising various local organizing Community Center of New York City. ing the bisexual, gay, lesbian and trans- efforts, Davis explained: “I believe the BGLT movement in the context of the con- sumer/survivor movement is an abstract concept that is addressed sporadically. We get together in a caucus, at an annual con- ference, and we say we’re going to do all these great things; but when we leave the conference, nothing happens.” However, he is hopeful: “I believe we’re at a crossroads, where people are finally saying, ‘Let’s start organizing.’ ” There have been some milestones. Gant remembers organizing at Alternatives ’89, in South Carolina. She recalled that a Center for Mental Health Services staff member, who is no longer there, “said there was money if we could organize.” However, she said, “when we came out, we were personally attacked.” Davis concurred: “In South Carolina, Members of Hearts & Ears gather to march in the Baltimore Pride Parade in 2000 there was great resistance to permitting BGLT folks a room for a caucus. I was still “The whole idea is for people not to feel gendered consumer/survivor movement in the closet at that time. Well, sorta.” alone and isolated, like they’re the only into the larger gay pride movement. At The next year, at the Bastille Day homosexual on Earth,” he said. the same time, Steve Holochuck is march at Alternatives ’90, in Pittsburgh, Another group, the Hearts & Ears, hopeful that the LGBT consumer move- “we marched together,” Gant said. Inc., drop-in center in Baltimore ment will be able to create more But although nothing much was hap-
CLEARINGHOUSE TO LAUNCH NEW PROJECT SERVING SOUTHEASTERN U.S. he National Mental Health In June, I collaborated with Kathy Consumers’ Self-Help Clear- BY ALAN MARZILLI Muscari of CONTAC to provide two inghouse is about to launch a days of training to this leadership regional branch office: the the Mental Health Association of South group, and it was an energizing experi- TSoutheast Consumer Clearinghouse Carolina and dedicated to advocating ence for everyone involved. The (SECC), which will be based in the for better services and protecting peo- redesign of the state mental health sys- Raleigh-Durham, N.C., area. Funded ple’s rights. The group is small tem provides a window of opportunity by the Center for Mental Health but growing. During a two-day training for the creation of consumer-run ser- Services (CMHS), SECC will primarily in Columbia, I presented the Clearing- vices, which are few and far between in serve local and statewide consumer house’s Freedom Self-Advocacy Cur- North Carolina. As Kathy and I pre- groups in Virginia, North and South riculum and a second day of specialized sented information about the consumer- Carolina, Georgia, Florida, Alabama, technical assistance on systems advoca- run services that exist throughout the Mississippi, Louisiana, and Tennessee. cy. CORE members will be taking nation, we could sense the commitment Having grown up in Atlanta, I am look- advantage of this technical assistance of the participants. ing forward to heading up the new by presenting the Freedom Self- The end of the conference was excit- project. Advocacy Workshops at the group’s ing: everyone was bursting with ideas, The timing is perfect: the consumer annual conference in November. and although group members were movement is really gaining momentum In May, I had the honor of giving the interested in various issues, they all in the region. Statewide consumer keynote address at the 10th Annual agreed that they needed to take action. groups are active in several of the Alabama Recovery Conference, which Each member of the group pledged to states, and the numbers of local support was sponsored by the state’s take certain steps before their next groups and individual consumers Department of Mental Health and meeting, including bringing fellow con- involved in advocacy continue to grow. Mental Retardation. The three days that sumers to county commission meetings, The new project will fuel this momen- I spent at the conference were enrich- registering people to vote, and writing tum by providing ongoing technical ing and inspiring. to their legislators. I look forward to assistance to local and statewide con- In my new home state of North continuing to work with the group as sumer groups. Carolina, we are currently experiencing they endeavor to reach their goals. In the months leading up to its a lot of changes. In November 2001, the With a growing number of dedicated launch, SECC has been off to a running state’s Department of Health and consumer advocates, the Southeastern start. In my travels across the region so Human Services proposed a new five- states are ready for change, and I far, I have provided technical assis- year plan that would drastically change am looking forward to working with tance to consumer groups that are just the way that public mental health ser- groups throughout the region. Over getting started and groups that are con- vices are delivered, including privatiz- the next year, SECC will conduct a tinuing to grow. Wherever I have gone, ing some services. Members of the number of training sessions with local I have encountered enthusiasm and North Carolina Mental Health and statewide consumer groups, dedication. Consumers’ Organization (NCMHCO) based on the Clearinghouse’s TEAM In April, I met with the director and have raised concerns about how this (Training/Education/Advocacy/Manage- staff of Forest Park Drop-In Center, plan would affect quality of services ment) Tool Kit. These three-day train- which is located in Broward County, and the grievance and appeals process. ing sessions will include one day of the Fla., on the grounds of a state hospital. Since moving to North Carolina, I Freedom Self-Advocacy Curriculum, a This innovative program provides peo- have had the opportunity to work with day focusing on the business aspects of ple who are separated from the commu- the Leadership and Advocacy Training consumer-run services, and a day dedi- nity, and who may be isolated and Group that NCMHCO has formed as cated to each group’s individual needs. alone, with a safe and welcoming envi- part of its Statewide Networking Grant Give us a holler, y’all. ronment for peer support and advocacy. from CMHS. Consumers from every Contact: Southeast Consumer Later that month, in Columbia, S.C., I region of the state have been communi- Clearinghouse, 265 W. Hwy. 54, Suite met with the leaders of CORE, a cating through meetings, teleconfer- 125-PMB, Durham, NC 27713, statewide consumer group sponsored by ences, and a new interactive Web site. [email protected] Page 8 • National Mental Health Consumers’ Self-Help Clearinghouse • Fall 2002
Message from the Executive Director NEW FREEDOM COMMISSION SHOULD SUPPORT PEER-RUN SERVICES he following is excerpted and would have been of benefit” (p. 111). adapted from testimony by Joseph BY JOSEPH A. ROGERS This report also noted that “con- A. Rogers to The President’s New sumer/survivor-operated services are Freedom Commission on Mental Assistance Center (CONTAC), the successful in increasing the overall THealth, July 18, 2002. National Empowerment Center, and the quality of life, independence, employ- The importance of consumer-operated National Mental Health Consumers’ ment, social supports, and education of services is recognized by no less an Self-Help Clearinghouse. We hope that consumer/survivors.” authority than the Office of the Surgeon support will continue. With training and education, people General, whose 1999 report, “Mental Such technical assistance is vital to with significant firsthand involvement in Health: A Report of the Surgeon consumer-run programs, according to a the mental health system become ser- General,” notes that consumer organiza- monograph published by the federal gov- vice providers who are not only ground- tions “have invigorated the fields of ernment called “Consumer/Survivor Self- ed in a knowledge base but who have the research as well as treatment and service compassion and understanding natural delivery design” (p. 14). . . . for someone who has “been there.” Consumer-run services fill the gaps There is almost no There is almost no better university than in the traditional mental health system. experience to teach someone what works Their hours of operation include hours and what doesn’t. when traditional services are closed, better university The Mental Health Association of and when such support is most needed Southeastern Pennsylvania (MHASP), of to counteract people’s isolation and which I am president and CEO, has 330 loneliness. Consumer-run services also than experience . . . staff members, the majority of whom, go into places often unserved by tradi- including myself, are in recovery from tional programs, such as into the Help Programs: A Technical Report” mental illness and/or substance abuse, streets; they make extensive use of vol- http://www.mentalhealth.org/consumer and/or have experienced homelessness. unteers, are extremely cost-effective, survivor/selfhelp/programs.asp. In this We provide nearly three dozen success- and require little, if any, red tape. (It is report, the authors noted that “[a]pproxi- ful peer-operated services. red tape that often discourages people mately 70% of the [consumer-run pro- Johnathan Evans is one MHASP from using traditional services.) gram] sites indicated that more training employee who started out as a service One of the important things the feder- and technical assistance would have con- recipient and then became a key staff al government has done to promote tributed to increased successes. . . . member. As an outreach advocate, the development of consumer-run ser- Participants revealed that they felt hin- Johnathan goes out on the streets to vices is to support national technical dered by this lack of knowledge and that engage homeless people who have men- assistance efforts such as the Consumer coordinated, comprehensive approaches tal illnesses to ask them what they need Organization and Networking Technical to meeting technical assistance needs ...continued on p.9
Older Adult Group Opens D.C. Office
The Older Adult Consumer Mental Health Alliance (OACMHA), an advocacy organization dedicated to improving the quality of life of older adults affected by mental illness and their family caregivers, has opened an office in Washington, D.C. OACMHA seeks to promote through public education and advocacy the development of accessible, affordable and age- appropriate mental health services. Want to be a member or a state contact person? Contact Linda Powell, executive director, at OACMHA, c/o Bazelon Center, 1101 15th St. N.W., Suite 1200, Washington, DC 20005, 202-467-5730, ext. 140; e-mail: [email protected]; Web site: http://amhserver.fmhi.usf.edu/oacmha/index.htm. Fall 2002 • National Mental Health Consumers’ Self-Help Clearinghouse • Page 9
...continued from p.8 and get your mail. Through ACCESS, we tion, entitlements, maintenance and and what they want and to help them get have seen people who had been on the stabilization.” those things. streets 10 to 15 years get into treatment, While there has been research that sup- Thirteen years ago, Johnathan himself stabilize in housing, go through rehab ports the effectiveness of consumer-run pro- was homeless, and one of our outreach and get jobs, with minimal supports. We grams, we need more. Dr. Jean Campbell, advocates found him. Now he has a have seen people reconnect with family principal investigator of the Coordinating deeply felt commitment to helping others members and get their children back. We Center for the Consumer-Operated Services as he was helped. have seen people get clean. Project (COSP) Research Initiative Johnathan works for a program called ACCESS, like all consumer-run ser-
...continued from p.1 The testimony by Joseph Rogers, executive director of the National Mental Health Consumers’ Self-Help Clearinghouse, called upon the Commission “to reject coercive and involuntary treatments and to promote alternatives that are engaging and empowering.” (See Page 8 for Rogers’ testimony at the July 18 Commission meeting.) Has Someone Inspired You? The Commission expects to hold 10 to 12 public meetings during the next year, in var- Nominate them for a Welcome Back Award ious parts of the country. Dates and locations will be announced on its Web site. Categories: Comments to the Commission may be Lifetime Achievement made in three ways: via the Commission Web site http://www.mentalhealthcommis Destigmatization sion.gov/contactus.html or by e-mail to Community Service [email protected]; by mail to President’s New Freedom Primary Care Commission on Mental Health, 5600 Fishers Lane, Parklawn Building, Room Psychiatry 13C-26, Rockville, MD 20857; or by pre- senting comments to the Commission at its Contributions made to the charity of each honoree’s choice meetings. Guidelines governing the public Nominate someone today! comment period are provided on the Commission Web site. They include limit- Call 1-800-463-4660 or visit wba.lilly.com ing comments to three minutes, calling Deadline: December 20, 2002 301-443-8956 two weeks in advance to get on the schedule, and bringing a written copy of remarks for the Commission’s records.—Susan Rogers
NIMH studies seek volunteers
The Clinical Brain Disorders Branch is seeking volunteers with long-term schizophrenia for a six-month inpatient research study at the National Institutes of Mental Health (NIMH), in Bethesda, Md. The program is free, and involves extensive diagnostic evaluations, medication-free studies, neuroimaging, and psychological and neuro- logical testing. Art therapy, educational groups, and occupational and recreational therapy will also be avail- able. Participants must be between 18 and 55, be diagnosed with schizophrenia, and be free of significant med- ical/neurological illnesses and active substance abuse. For more information: Anne Riley, Ph.D., 301-594-0874 or, toll-free, 1-888-674-6464, or e-mail: [email protected]; or Web site: http://cbdb.nimh.nih.gov/inpatient. NIMH is also seeking sibling pairs, at least one of whom has been diagnosed with schizophrenia, for a study on the genetics of schizophrenia. Outpatient testing procedures include clinical interviews, neuropsychological testing, a neurological exam, a blood draw, neuroimaging, and recordings of brain waves and eye movements. No change in medication is required. NIMH can assist with lodging and travel expenses to help families travel to Bethesda, Md. Siblings are compensated for their participation. Through the identification of the genes asso- ciated with schizophrenia, researchers believe that more effective treatments and methods of prevention will one day be possible for families at risk. NIMH is also conducting shorter studies of outpatients with schizophrenia which may involve those with schiz- ophrenia and their siblings or those with schizophrenia alone. For information about eligibility requirements, please call Mary Weirich, M.S.W., at 1-888-674-6464, or e-mail [email protected]. Fall 2002 • National Mental Health Consumers’ Self-Help Clearinghouse • Page 11
CLEARINGHOUSE GIVES PEER-SUPPORT PROPOSAL WRITERS A BOOST lmost every week, the National may be enough for your purposes without a • Elaina M. Kyrouz and Keith Mental Health Consumers’ trip to the library. Humphreys compiled a list of abstracts of Self-Help Clearinghouse Call the Clearinghouse for more details articles describing the effectiveness of self assists groups working on grant about using these studies to enhance your help:http://www.mentalhelp.net/poc/view_ Aproposals by helping them find literature grant proposals: 1-800-553-4539. For the doc.php/type/doc/id/993 that confirms the value of peer support, cost of postage, we can also send you some • National Association for Rights advocacy, and consumer-run services. additional supporting literature that we Protection and Advocacy president Pat Even if your ideas about peer support have in our library. Risser’s Web site lists some peer support and advocacy came from personal experi- The following is a partial list of online studies: http://home.att.net/~PatRisser/ ence, citing scholarly evidence that backs information about the value and efficacy of helpingclients/PeerSupportStudies.html up your ideas gives credibility to your pro- peer support, self-help, and empowerment. • The following is a comprehensive, anno- posal in the eyes of funders. tated bibliography on self-help and peer sup- Some Clearinghouse clients are unfamiliar port published by the Missouri Institute of with supporting research and will seek our Citing evidence Mental Health Program in Consumer Studies help with background reading before they and Training: http://mimh200.mimh.edu/ begin work on a proposal. The Clearinghouse PieDb/01599.htm library cannot replace a college research gives credibility to • The National Research and Training library with a staff of professional librarians, Center of the University of Illinois at but it can provide a head start. Chicago convened a workgroup that devel- The Clearinghouse can also function as your proposal. oped the following bibliography, which has a literature memory bank, which is helpful abstracts of articles and reports that sup- since most people do not keep a list of • “Mental Health: A Report of the port the value of self-determination and every article they have read — especially Surgeon General” endorses peer sup- empowerment: http://www.psych.uic.edu/ while browsing Web sites and reading e- port and consumer advocacy: UICNRTC/uicnrtc-sdbib.pdf. mail. For example, many Clearinghouse http://www.surgeongeneral.gov/library/ • The following paper gives information clients have read at least parts of “Mental mentalhealth/home.html. The following about and citations for the series of peer Health: A Report of the Surgeon General” section of the report is specifically on support/mutual aid studies conducted by or the Center for Mental Health Services self-help and consumer advocacy: Julian Rappaport and colleagues: publication “Consumer-Operated http://www.surgeongeneral.gov/library/me http://www.communitybuilders.nsw.gov.au/ Services: A Technical Report,” but the ntalhealth/chapter4/sec6.html#consumer. download/mutual.doc. Clearinghouse provides reminders that The following section lists all the • The following bibliography from St. these resources are excellent references to references for the studies cited by the Ambrose University has abstracts of schol- cite in a grant proposal. Surgeon General: arly articles that support the value of We find out what concept a client is try- http://www.surgeongeneral.gov/library/ empowerment: http://www.scs.unt.edu/ ing to substantiate; then we suggest studies mentalhealth/chapter4/ref4.html classes/CSAG/4450/4450/ToolBox/empow that may be helpful. Copyright law pro- • Mark S. Salzer, Ph.D., of the erbib.htm hibits our dissemination of many of the University of Pennsylvania makes a • The National Resource Center on studies themselves, but we are able to case for consumer-operated services Homelessness and Mental Illness com- direct people to useful research that is as an evidence-based practice: piled a bibliography with abstracts on con- available online. http://www.bhrm.org/guidelines/ sumer involvement in service provision: To obtain the actual studies only salzer.pdf. The context of the pdf http://www.nrchmi.com/pdfs/bibliogra- described in these online resources, take document, for citation purposes, is: phies/ConsumerInvolve.pdf. the descriptions to a local university http://www.bhrm.org/guidelines/mhgui • Information about the COSP study library and ask a reference librarian for delines.htm led by Jean Campbell, Ph.D., is help locating them. Finally, for those of you • The American Self-Help Clearing- available at http://www.cstprogram.org/. approaching a deadline and adding cita- house compiled a summary of various peer Keep checking the Web site for tions to your grant proposal at the last support studies: http://mentalhelp.net/self new developments in this important minute, information from these abstracts help/selfhelp.php?id=864 project. If you would like to receive quarterly issues of The Key
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