Consumer Supporter News
September - October, 2000

• NAMI New Mexico Focuses on Client Cultural Competency
• NCSTAC Director's Message
• American with Disabilities Act
• CMHS Launches Consumer/Survivor Subcommittee
• Consumers Implement Warm-Line in Washington
• Special Events this Fall
• Community Action Grants Due

NAMI New Mexico Mini-Grant Focuses on "Client" Cultural Competency

By Tom Lane, NAMI New Mexico

When NAMI New Mexico pledged to support a statewide outreach effort, the Consumer Involvement Project, the opportunity to apply for one of the NMHA mini-grants seemed like an excellent mechanism to address the hot topic of cultural competency. As the working group started kicking around ideas, the desire to develop a project to address the disability culture of mental illness emerged. I'll borrow a term other groups have used, 'client' culture, throughout this article.

Profile of New Mexico

There are 1.6 million people in New Mexico. Of these, the Department of Health estimates that there are 88,000 adults and 44,000 children who have severe, chronic mental illness. Sadly, more individuals in New Mexico are in jail (20,200), than are in treatment (20,000). Just one in eight children and one in four adults with mental illness are treated for their respective disease. Although the number of persons who are uninsured who have mental illness is not known, one in four of the population statewide lacks health insurance.

Transportation and lack of services are barriers for most people in the state - thirty of thirty-three counties in New Mexico are medically underserved. Most of the state is rural, and some counties are categorized as frontier due to their sparse population. With the largest Hispanic population in the United States (38%), 28 Native American Indians pueblos (9%), a small African-American population (3%), and a broadly dispersed population of Anglos (50%), New Mexico offers a culturally diverse pool of committed individuals working together for change.

There are virtually no consumer-driven or consumer-managed self-help models in place, although there have been consumer leaders working to change this.

The goals of the New Mexico Cultural Competency project include the following:

1. With self-identified consumers, to identify and document community resources and needs, and to develop strategies to prioritize and fulfill unmet needs.

2. Educate consumers about processes of systemic change in New Mexico and train consumer in skills that will facilitate their involvement in systemic change.

3. Create a statewide Cultural Competency Standards Council

4. Conduct a First Annual New Mexico Consumer/Survivor Summit in January 2001.

The communities involved are Albuquerque, Santa Fe, Roswell, Alamogordo, Las Cruces, Gallup, and Farmington. The cultural competency mini-grant project has developed partnerships with various agencies, including the New Mexico Department of Health Behavioral Health Services Division, the Division of Vocational Rehabilitation, Project SUCCEED, the Psychosocial Rehabilitation Association of New Mexico, consumer groups, and providers including the University of New Mexico Mental Health Center.

Consumer groups from around the state are invited to participate in the work to be done. Most importantly, individuals are invited to become involved in a process of defining what our New Mexico client culture looks like.

As a community of people, we share the 'culture' of accessing services and resources to cope with psychiatric labels, and of enduring the discrimination focused towards us. Client culture includes individuals from all other cultures. Ethnicity, religion, gender, lifestyle, occupation, and geographics can define cultures, as can disabilities. The concept of disabilities culture includes various physical disabilities, from persons who must rely on a wheelchair or personal attendant to persons identifying themselves with Deaf culture.

Client culture, as a disabilities culture, is included in the Americans with Disabilities Act, in that people with psychiatric labels can ask for reasonable accommodations in the work place. This is only one example of the evolution of awareness in our society about this community. There is also a growing awareness of the concept of recovery from disabilities, of the capacity to overcome the challenges associated with living with a disability or illness, including the many illnesses associated with 'client' culture.

Recovery in one culture may not look like recovery to another culture, particularly when cultural diversity is so great. Native American or American Indian tribal communities provide a different cultural environment than does the Albuquerque community, and therefore a different 'client' culture. However, there are some elements of 'client' culture that are shared, especially elements of recovery.

In New Mexico the challenges in developing and maintaining recovery-centered supports, services, and resources are many. There are barriers to culturally competent communications, given the many languages used among the various cultures here, include written and oral communication. Beliefs and values within each culture define and guide how a person who might be part of 'client' culture is treated. Those beliefs and values will impact the types of services, resources, and even medications an individual might access, depending on the cultural background.

It is the hope of the Consumer Involvement Project to provide an expanding range of resources, services, and supports, which are recovery-centered. More important is the opportunity to participate in the growth of the consumer movement in New Mexico. The work being done with the NMHA Cultural Competency Mini-grant will establish a foundation of what is to be considered culturally competent, and help to develop strategies to put recovery-based, consumer-driven projects and goals into tangible community resources.

For more information about the New Mexico project, contact Thomas Lane at tlane@nm.net or call toll free 1-800-953-6745 -end- If room, use either/both of the following in bold: With the largest Hispanic population in the United States, 28 Native American Indians pueblos, a small African-American population, and a broadly dispersed population of Anglos, New Mexico offers a culturally diverse pool of committed individuals working together for change. It is the hope of the Consumer Involvement Project to provide an expanding range of resources, services, and supports, which are recovery-centered.

NCSTAC Director's Message

As the National Consumer Supporter Technical Assistance Center finishes its second year of operation, we are closer to understanding the needs that consumer supporter organizations have in building stronger and more business savvy groups. Advocacy requires passion and determination to achieve social justice in an unjust society. NCSTAC is also beginning to identify other skills that organizations need to survive such as strategic planning, board development/recruitment, leadership, and cultural competence.

To complement our efforts in the development of technical assistance guidebooks, we have decided to develop training curricula to accompany our products. This means you and your organization can call on NCSTAC staff to customize your training needs or utilize the materials we've developed in facilitating your own training. Our goal of strengthening consumer supporter organizations across the country can only be accomplished with your continued interest in our work and through your local, regional and statewide efforts.

Presenting best practices in the field is another goal we are striving to achieve. Through the National Mental Health Voter Empowerment Project, we have seen wonderful strides in giving people with mental illnesses a voice in our continued effort to achieve social justice. Other projects in development focus on employment issues and on women's issues in recovery (our third round of mini-grant funding).

As the director of the National Consumer Supporter Technical Assistance Center, I promise that the work ahead of us is the just the beginning. NCSTAC will continue to assist you in your efforts to successfully support consumers in advocacy, empowerment, recovery, and reform of the service system. With your help, together we can gain strength in numbers toward a consumer advocacy movement that creates a constituency of consequence.

Catherine Huynh, MSW

Americans with Disabilities Act: Still Controversial after Ten Years

By Brian Coopper, NMHA Senior Director of Consumer Advocacy and Jennifer Heffron, NMHA Senior Director of State Affairs, Healthcare Reform

The Americans with Disabilities Act (ADA) is one of the most important pieces of civil rights legislation ever passed for people with disabilities. July 26th, 2000 marked the tenth anniversary of the day President George Bush signed the Americans with Disabilities Act (ADA) into law. This important date was heralded by a number of commemorative events in Washington, D.C. and elsewhere around the country. A special "Spirit of ADA Torch Relay" brought a message of solidarity on disability rights to Washington, and receptions at both Vice President Gore's residence and Union Station honored those who were instrumental in this bill's passage. (For more information on the relay, go to http://www.spiritofada.org.) Unfortunately, despite the beneficial impact the ADA has had on persons with disabilities, there continue to be legal challenges to this legislation. The United States Supreme Court will be the final arbiter of whether or not Congress exceeded its Constitutional authority in passing this landmark legislation for people with disabilities.

ADA provisions

The ADA applies to all forms of disabilities (physical, mental, or sensory) and covers persons who have a disability, persons who have a history of having had a disability, or persons who are perceived as having a disability. A person is considered to have a disability if his or her impairment substantially limits one or more major life activities. It is broken down into "Titles," or sections. Title I applies to employers with 15 or more employees, Title II applies to state and local governments, and Title III applies to places of public accommodation, such as stores, hotels, restaurants, etc.

Some of the terms to know when talking about the ADA are "reasonable accommodations," "undue hardship," and "qualified individual with a disability:" · Undue hardship refers to an action requiring significant difficulty or expense, when considered in light of such factors as the financial resources involved or the type of operations of the employer. · There are three categories of reasonable accommodations. Those that ensure equal opportunity in the application process; those that enable the employ to perform the essential functions of the job; and those that enable employees to enjoy equal benefits and privileges of employment. · A qualified individual with a disability is a person who, with or without reasonable accommodation, can perform the essential functions of the job. This determination should be made at the time of employment, and it essentially means that the person's need for accommodation should not be taken into consideration during the hiring process.

Basically, the ADA requires employers, governments and places of public accommodation to provide reasonable accommodations to qualified individuals with disabilities as long as these measures do not create an undue hardship on the provider.

The law is intentionally vague on what is a "reasonable accommodation" versus "undue hardship" in the hope that people will negotiate practical solutions that work for everyone. Past studies of the implementation of the ADA indicate that the vast majority of accommodations have cost either nothing or less than $500 to implement. The law also mandates that services be provided in the "most integrated setting." Historically, persons with disabilities have been segregated or excluded from participation in community activities, and the ADA's language was designed to explicitly address the attitudinal barriers that have prevented persons with disabilities from being full members of society.

Legal Landmarks and Challenges

Despite the evidence that the ADA does not cause an undue hardship on those responsible for implementing it, resistance to the law remains in certain sectors of our society. Some legal cases have been appealed repeatedly, and the UNITED STATES Supreme Court has agreed to hear a few of them. In 1999, the Supreme Court heard and ruled on the landmark case Olmstead v. L.C. and E.W. In the Olmstead case, the state of Georgia was accused of violating the ADA's mandate for state governments to provide services to people in the most integrated setting.

The plaintiffs in that case, Lois Curtis and Elaine Wilson, were residents in state institutions in Georgia, and although their doctors had recommended that both women would best be served in community-based residential settings, the state had failed to provide those services. The court decided that denial of community placements to individuals with disabilities is precisely the kind of segregation that Congress sought to eliminate in passing the ADA. The decision presents new opportunities for advocating for community-based services and supports for people with disabilities.

There have been other cases before the Supreme Court challenging the ADA, but none have challenged the constitutionality of the law the way University of Alabama v. Garrett will later this year. In October 2000, the Court will hear oral arguments. The question at stake is whether or not Congress exceeded its Constitutional authority by passing a law that allows suits by private citizens under the ADA against non-consenting states. A thorough discussion of the case is available online at www.bazelon.org/garrettcase.html. If the Court sides with the University of Alabama that Title II of the ADA is unconstitutional, this will in effect overturn the Olmstead ruling of last year.

In addition, it means that (1) states would no longer have to comply with the ADA's integration mandate; (2) states would no longer have to make their buildings and services accessible; and (3) state employers would no longer have to comply with the ADA's mandate against employment discrimination.

A "March for Justice" is planned in Washington, D.C. for Tuesday, October 3, 2000 to demonstrate support for the ADA to the Supreme Court. For more information, contact www.tash.org/marchforjustice/index.htm.

Resources

Many resources are available for anyone with an interest in learning more about the ADA and the protections it offers people with disabilities. The following are a few of the good sites for ADA information as well as advocacy around the support of the ADA: ·

For basic information on the ADA, there are ten federally-supported regional Disability and Business Technical Assistance Centers. The directory can be found at www.ncddr.org/relativeact/kdu/webres_ada.html. ·

The Job Accommodation Network, or JAN, provides free information on reasonable accommodations in employment. You can reach JAN at (800) 526-7234 (V/TTY), or http://janweb.icdi.wvu.edu. ·

The UNITED STATES Department of Justice maintains ADA Information Hotlines at (800) 514-0301 and (800) 514-0383 (TTY). Information about the ADA is available online at www.usdoj.gov/crt/ada/publicat.htm. ·

The Judge David L. Bazelon Center for Mental Health Law is the leading advocacy organization for the protection of legal rights for people diagnosed with psychiatric disabilities. You can find a wealth of legal advocacy information at their web site, www.bazelon.org, or you can reach them at (202) 467-5730. The Bazelon Center does not, however, provide services for individual cases. ·

Every state has a federally-funded protection and advocacy (P&A) program to assist individuals with disabilities. The National Association of Protection and Advocacy Systems (NAPAS) maintains a directory of all the P&A programs at www.protectionandadvocacy.com, or you can call NAPAS at (202) 408-9514. ·

The American Association for People with Disabilities (AAPD), sponsor of the ADA Torch Relay, can be reached at www.aapd-dc.org or (800) 840-8844. ·

ADAPT - American Disabled for Attendant Programs Today is the driving force behind MiCASSA, the Medicaid Community Attendant Services and Supports Act. For more information on ADAPT, go to www.adapt.org or call (512) 442-0252. ·

Justice for All was formed to defend and advance disability rights and programs. You can subscribe to JFA's Action Alerts through their web site at www.jfanow.org. ·

TASH is an international association of people with disabilities, their family members, other advocates, and professionals fighting for a society in which inclusion of all people in all aspects of society is the norm. You can find TASH at www.tash.org or (401) 828-8274. ·

National Council on Disability (NCD) is an independent federal agency making recommendations to the President and Congress on issues affecting Americans with disabilities. You can contact NCD at www.ncd.gov or (202)272-2004.

 

CMHS Launches Consumer/Survivor Subcommittee

The Substance Abuse and Mental Health Services Administration (SAMHSA)of the Center for Mental Health Services (CMHS) has announced the naming of a new subcommittee comprised of consumers and survivors who have received mental health services, to assist the CMHS National Advisory Council in matters concerning mental health-related activities and policies.

"This first-ever Subcommittee on Consumer/Survivor Issues of the CMHS National Advisory Council is designed to enhance consumer/survivor involvement in the deliberations of the CMHS National Advisory Council. The Subcommittee will be serving as a fact-finding body to report on the specific needs, issues and concerns from the perspective of individuals with mental illnesses," explained SAMHSA Administrator Nelba Chavez, Ph.D.

Established in 1992, the CMHS National Advisory Council advises, consults with, and makes recommendations to CMHS. "The naming of this subcommittee will help SAMHSA in its efforts to reach out and listen to consumer thoughts and ideas on what issues need to be addressed," Chavez said.

CMHS convened a planning group, composed of national consumer/survivor leaders, to create a screening process for selecting a pool of candidates who met basic eligibility requirements and developed criteria for use in assessing individual nominees based on the needs of the group as a whole.

In addition, the planning group also instituted a review process and a nomination process to ensure selection of a culturally and geographically diverse pool of candidates. The entire process resulted in the receipt and review of 100 nominations and two years of work.

"The creation of the subcommittee is a landmark occasion and continues our efforts to promote consumer/survivor participation at every level of the mental health system," CMHS Director Bernard S. Arons, M.D. said.

The planning group included: Ronald Bassman, National Association for Rights Protection and Advocacy, (New York); Elliott Birckhead, Consumer Organization and Networking Technical Assistance Center, (West Virginia); Frank Burgman, former member of the CMHS National Advisory Council, (Florida); Judi Chamberlin, National Empowerment Center, (Massachusetts); Laura Ciprotti, The Madness Group, (Georgia); Mike Friedman, NAMI Consumer Council, (New York); Lisa Goodale, National Depressive and Manic Depressive Association, (Illinois); Glen Hopkins, National Mental Health Association, (Ohio); Karen Kangas, National Association of Consumer/Survivor Mental Health Administrators, (Connecticut); David Oaks, Support Coalition International, (Oregon); John Piacettelli, Older Adult Network, (Washington); Gilberto Romero, People of Color Network, (New Mexico); Joseph Rogers, National Mental Health Consumers Self-Help Clearinghouse, (Pennsylvania); and Shirley Sachs, Recovery, Inc.,(Illinois).

The new subcommittee is composed of ten members who will serve staggered three-year terms: Russell Pierce, J.D. (Nebraska): Current CMHS National Advisory Council Member and Chair of the Subcommittee; Kevin Fitts (Oregon): Director of the Office of Consumer Technical Assistance; Donna Preston Pennsylvania): Consumer Advocate with the Mental Health Association of Southeastern Pennsylvania; Sylvia Caras, Ph.D (California): Coordinator of the People Who Net and Board Member of the World Federation of Mental Health; Cynthia Hopkins (Texas): Director of Consumer Affairs for the Texas Department of Mental Health and Mental Retardation; Juli Ann Lawrence (Illinois): Coordinator of ect.org, Caroline Kaufmann, Ph.D. (Pennsylvania): researcher and consultant; Sharon Yokote (Hawaii): advocate and educator; and Jon Brock (Alabama): Editor of The Southern Edition of the Altered State.

The Subcommittee will convene its first meeting before the September 8, 2000, CMHS National Advisory Council meeting.

The Center for Mental Health Services (CMHS) is a component of the Substance Abuse and Mental Health Services Administration (SAMHSA). SAMHSA, a public health agency within the U.S. Department of Health and Human Services, is the lead federal agency for improving the quality and availability of substance abuse prevention, addiction treatment and mental health services in the U.S. News Media requests for information on SAMHSA programs should be directed to Media Services at (800) 487-4890. Additional information is available at http://www.mentalhealth.org/newsroom/ --end-- If room, set in bold: "This first-ever Subcommittee on Consumer/Survivor Issues of the CMHS National Advisory Council is designed to enhance consumer/survivor involvement in the deliberations of the CMHS National Advisory Council."

Consumers Implement Warm-Line Washington

By Danielle Davis, Project Manager, NCSTAC

Consumer Voices Are Born (CVAB) in Clark County Washington has launched a consumer-run Warm Line to enhance services offered through its peer support drop-in center. The Warm Line is designed to provide a place where consumers can call and talk to trained volunteers who not only provide support but also help consumers manage their problems and avert the need for professional intervention. In addition to being a resource to the community at large, the Warm Line offers particular benefits to minority populations in Clark County. CVAB is working collaboratively with community networks to implement outreach strategies specifically to engage Russian, Southeast Asian and Latino residents living with serious and persistent mental illness.

Through a community assessment, CVAB identified these populations as difficult to engage in traditional mental health services because of the lack of mental health professionals who understood their language and cultural attitudes towards mental health treatment. The Warm Line creates a systemic consumer/peer presence in the county to accompany the existing crisis response infrastructure through culturally sensitive public education and peer training. With such a network in place, CVAB hopes to erase cultural isolation so these individuals and their families will come forward, utilize mental health services and gain self-empowerment through treatment.

CVAB will complete its first round of initial training for Warm Line volunteers by September 2000, and a second group of volunteers are expected to graduate in October. These peer volunteers are trained by crisis personnel with the Clark County Regional Support Network (RSN) at no cost. The next phase of the program implementation involves translating all written and outreach materials to languages reflective of the target populations. According to Donna Roberts, administrative coordinator of the Warm Line, translation is a priority for CVAB, as communication and outreach to the target populations are essential to achieve program goals and success.

CVAB is a consumer-run nonprofit organization. The organization's motto, "Be not Alone" epitomizes the agency's values towards integrating peer support in the mental health treatment and recovery process. CVAB is recognized as an independent, yet integral part of the county mental health system. Through partnerships with the mental health services system, CVAB is working towards developing a more formal role for consumers in the crisis response, intervention, and prevention activities in Clark County. Strengthening the consumer's role in treatment and recovery reduces stigma, increases self-empowerment and heightens sensitivity to the unique and culturally diverse needs of all consumers.

For more information about this project, contact Donna Roberts, Administrative Coordinator at 360-695-5012.

Special Events this Fall

September is Alcohol and Drug Addiction Recovery Month

September 2000 will be observed as "National Alcohol and Drug Addiction Recovery Month" to promote the importance and effectiveness of substance abuse treatment. To support you in recognizing this important event, the Substance Abuse and Mental Health Services Administration's Center for Substance Abuse Treatment has prepared an on-line kit with materials to help you reach people and groups in your community such as policymakers and health insurers, health professionals who serve adolescents, schools and the education community, professionals in the juvenile justice and family court systems, community-based organizations serving youth, businesses that employ youth, parents and families, and other consumers. The kit is available on the world wide web at http://www.health.org/recovery00/kit/index.htm.

NMHA Pays Tribute to the Surgeon General

The National Mental Health Association will be honoring U.S. Surgeon General David Satcher with its prestigious "Into the Light Award" at a special tribute dinner on October 5. Doctor Satcher has a distinguished history in support of people fighting to overcome mental illness. He has brought the issue of mental illness to the forefront of the American Public Agenda with the groundbreaking Surgeon General's 1999 "Report on Mental Health," and his research and outspoken leadership have not only expanded the understanding of the impact of mental illness in society, but have also improved the lives of those who are suffering. Previous "Into the Light Award" honorees include Dr. Alan Leshner of NIDA, Dr. Steven Hyman of NIMH, Elizabeth Dole, Rosalynn Carter, and Tipper Gore. For more information, contact Jennifer Sharp at 703-838-7542 or by email at < jsharp@nmha.org>.

 

Community Action Grants Due September 10, 2000 and May 10, 2001

The Substance Abuse and Mental Health Services Administration will be providing Community Action Grants to support the adoption and implementation of exemplary practices related to the delivery and organization of services for children with serious emotional disturbance or adults with serious mental illness. The target population may also have co-occurring disorders, such as substance abuse or other mental, emotional or behavioral disorders.

This Program is made up of two types of grants: Phase I Consensus Building and Decision Support Grants assist communities in building consensus around the planning for the adoption of exemplary practices that meet the needs of a defined population. Phase II Implementation Support Grants are only available to successful Phase I grantees. Funding has been set aside for grants that address the needs of Hispanics/Latinos and American Indian/Alaskan Native youth with serious emotional or substance abuse problems. Twenty to thirty grants may be awarded, and are expected to range from $50,000 to $150,000 per year.

Copies of this Guidance for Applicants (GFA PA-00-003) as well as information about additional FY 2000 funding opportunities can be downloaded from www.samhsa.gov/grant/gfa_kda.htm. It is also available from the Knowledge Exchange Network (KEN) at (800) 789-2647; TTY (301) 443-9006; fax (301) 984-8796.

For more information about the Community Action Grant Program for Adults, please contact Rhonda Buckner at 703/838-7501, rbuckner@nmha.org; for more information about the Community Action grants for children, youth or families or the Youth Violence Prevention Cooperative Agreements, please contact Shalini Madan Benson at 703/838-7548, smadan@nmha.org.