Mental Health Programs
About CMHS
CMHS National Advisory Council Subcommittee
on Consumer/Survivor Issues
Hyatt Regency Bethesda
Bethesda, Maryland
January 23-24, 2001
Meeting Notes
Tuesday, January 23, 2001
The meeting was called to order at 10:08 a.m. by Chairperson Russell Pierce.
National Advisory Council Subcommittee members in attendance included Jon Brock, Kevin Fitts, Caroline Kaufmann, Juli Anne Lawrence, Donna Preston, Sylvia Caras, Sharon Yokote, and Russell Pierce.
Center for Mental Health Services (CMHS) program staff included Bernard Arons, CMHS Director; Shelly Burgess; Paolo Del Vecchio; Risa Fox; Iris Hyman; Michael Malden; Ronald Manderscheid; Betsy McDonel-Herr; Aaron Salinas; Carole Schauer; Louise Peloquin; Hardy Stone; Marie Danforth; Eugene Wolfe; Michael English; and Jeff Buck. Several CMHS interns were also in attendance.
Peggy Clark attended the meeting, representing the the Centers for Medicare and Medicaid Services.
Brian Coopper, Irene E. Lynch, Kathy Muscari, and Ron Thompson attended the meeting as observers.
Subcommittee Member Introductions
- Juli Anne Lawrence works on ECT issues.
- Kevin Fitts manages, Office of Consumer Technical Assistance, a consumer-run technical assistance center that promotes self-help in Oregon. He reported that the Oregon State government is in the midst of a reorganization that will join mental health with alcohol, substance abuse, and Medicaid. He also informed the group that an Olmstead-based lawsuit was recently filed in Oregon.
- Sylvia Caras is an information, referral, and resource person who maintains contact with various organizations and individuals via the Internet. She distributed information on an upcoming CMHS conference on discrimination and stigma, a news article from Behavioral Healthcare Tomorrow, a fact sheet on the role of committees, and other materials. Dr. Caras reported on two meetings she recently attended, one at the Carter Center, which focused on cultural diversity, and one at the Mental Health Statistics Improvement Program (MHSIP) Western States Meeting held in San Jose, California.
- Donna Preston, a mental health advocate from Philadelphia, Pennsylvania, is promoting a self-advocacy curriculum.
- Sharon Yokote, who is from Hawaii, reported on an Asian American Pacific Islander leadership summit that she attended.
Old Business
The minutes of the September 6-7, 2000, meeting were approved, and it was suggested that they be placed on the Information Center web site.
Discussion of Mission Statement
The subcommittee discussed revising the language of the mission statement.
The group unanimously agreed to the following Mission Statement:
The mission of the National Advisory Council on Consumer/Survivor Issues is to advise the CMHS National Advisory Council on specific values, needs, issues, and concerns from the consumer/survivor perspective and to reflect best practices in providing that advice.
CMHS Update: Bernard Arons, M.D.
Dr. Arons highlighted critical activities occurring in CMHS including the following:
SAMHSA received its reauthorization and received budget increases to support an expanded block grant program, school violence initiatives, a suicide prevention initiative, staff training on restraint and seclusion, expansion of the minority fellowship program, and increases for the protection and advocacy program.
Programs of Regional and National Significance included Knowledge Development Application (KDA) programs, consumer networks, and targeting capacity responses (new grants made available to local political jurisdictions to work in the areas of racial and ethnic disparity reduction and other related issues).
Because of the change in administration, this is a transition time and a hiring freeze has been put in place. Several regulations have been put on hold pending review. Joe Autry, M.D., will continue as the Acting Administrator of SAMHSA until President Bush appoints a new administrator.
Questions and Comments to Dr. Arons
The publication of the Participatory Dialogues: A Guide to Organizing Interactive Discussions on Mental Health Issues Among Consumers, Providers, and Family Members was praised. Support was requested to attend the March 2001 conference in Baltimore, Maryland.
A concern was raised about culturally appropriate and language-appropriate publications and materials for children and families.
Dr. Arons reported that CMHS plans to hire another consumer affairs specialist within OEL.
Review of the Process for Filling Subcommittee Vacancies
It was noted that there are three vacancies this year as the one year terms expire for Sylvia Caras, Jon Brock, and Sharon Yokote.
Two possible processes were discussed:
- Reopen the pool of candidates.
- Broaden the net to identify others who are interested in serving on the subcommittee.
Nominations will be approved by Dr. Arons and the new SAMHSA Administrator.
It was suggested that the members whose terms will expire should not participate in the process for filling vacancies.
The Subcommittee agreed that the September 2000 meeting minutes should be disseminated via the Internet and include a notice for an open application.
Presentation of CMHS Public Information Campaigns
Social Marketing Campaign for Prevention of School Violence: Louise Peloquin, Communications Director, Special Populations and Programs Development Branch, CMHS
The goal of this effort is to develop a comprehensive approach with an emphasis on prevention and early intervention. Some essential elements are use of social marketing language, grantee support, training, media relations, research core messages, and culturally responsive materials development.
The group viewed a PSA produced in collaboration with the local ABC-affiliate television station. The pilot is titled, "Take Time To Listen, Make Time To Talk."
Children's Mental Health: Hardy Stone, Director of Communications, Child, Adolescent and Family Branch, CMHS
Phase One was a public education campaign emphasizing caring for every child. It includes a national spokesperson and technical assistance concerning the use of mass media.
In 1999, the public education campaign was replaced by a social marketing campaign. The intent is to change behavior, have parents recognize that mental health services exist for their child, and obtain services for children in need of them. Two communication academies have been established, one in Phoenix, Arizona, and the other in Pittsburgh, Pennsylvania. Training is provided to grantees in the areas of strategic communications planning, media relations, public speaking, and special-event planning.
Employment Summit: Shelly Burgess, Public Affairs Specialist, Office of External Liaison, CMHS
The Employment Summit will be held in October 2001 at a place yet to be determined. The Summit's objectives are in line with the Employment Intervention Demonstration Program.
A planning committee is forming to implement the summit's goals. One agenda idea would have two tracks, one for consumers and one for businesses.
Anti-Discrimination and Anti-Stigma Activities: Iris Hyman, Consumer Affairs Specialist, OEL, CMHS
The following three major activities were highlighted:
- A CMHS publication, Challenging Stereotypes: A Media Guide, will be released in the near future and widely distributed.
- The National Mental Health Awareness Campaign has effectively used PSAs on MTV to reach the younger audience and they also plan to develop an adult media campaign.
- An upcoming SAMHSA/CMHS-sponsored meeting—Spring to Action: A National Mental Health Symposium To Address Discrimination and Stigma—will take place on March 26-27, 2001.
CMHS Programs: William Scarbrough III, Ph.D, Macro International
The Information Center is the communications provider of choice for CMHS programs, with a Web site, an 800 number, and publications.
Enhancements for the Information Center being considered include:
- Considering a name change
- Identifying a communications consultant
- Developing brand identity and building awareness
- Partnering
- Developing core competencies of audience-based communications.
Assertive Community Treatment Study: Peggy Clark (the Centers for Medicare and Medicaid Services), Michael English (CMHS), and Betsy McDonnel-Herr (CMHS)
The Assertive Community Treatment (ACT) project is a 2-year effort to examine the implementation of ACT programs in these States—Texas, Wisconsin, Rhode Island, Maryland, and Michigan.
Initial findings include the following:
- Managed care has transformed the leadership and design of ACT.
- States are looking for national guidance in developing program standards.
- Financing issues—most States rely on Medicaid funding via the rehabilitation option.
- States have questions about the adequacy of rates.
- Reimbursement methods have positive and negative consequences.
- The use of case rates gives providers a better option.
- A low consumer-to-staff ratio should be maintained.
- Data collection is critical in analyzing outcomes.
- Sufficient resources and a well-trained staff are critical to achieve program objectives.
A literature review and site visits are part of the study's approach, which also includes a diverse mix of urban, suburban, and rural areas. It also includes measures of consumer views of coercion. The final products are expected to be a technical assistance manual and a model.
Data collection methods will include consumer focus groups. Interview instruments will be reviewed by an expert advisory panel.
The Subcommittee raised questions related to the level of coercion of such programs. Other concerns included: How do we judge the effectiveness of community treatment? Do these programs promote dependency? Does ACT drain money from other programs? Whom does the program serve best? Does it help recently deinstitutionalized people? Where do consumers go after "graduating" from ACT programs?
It was suggested that periodic updates about the ACT project be provided to the Subcommittee.
Old Business Revisited
The role of the Chair is to serve as the voice of the subcommittee to the National Advisory Council.
It was suggested that between face-to-face meetings, the Subcommittee should have periodic conference calls.
Suggestions for such calls included:
- Rotation of the chair for the conference calls
- Providing of discussion summaries to Mr. Pierce
- Preselected topics for the calls.
It was suggested that the group follow up on the recommendations accepted by the National Advisory Council (NAC) and note any progress made: for example, people-first language and the addition of discrimination on the meeting notice.
It was also suggested that the Subcommittee identify themes that the body could discuss over the next year.
It was decided that during the introduction period of the agenda, members will be given time to update the group on their individual activities.
The next meeting dates were identified as: May 20-21, 2001. These dates will allow members of the Subcommittee who are interested to attend the SAMHSA Joint Meeting on May 22-23, 2001, and the CMHS NAC Meeting on May 24, 2001.
The Subcommittee voted four to three that there would be no rule for removal of members.
To fill vacancies, the Subcommittee will retain the existing matrix of candidates and will distribute an ongoing nomination announcement.
Day one of the meeting ended at 5:41 p.m.
Wednesday, January 24, 2001
It was announced that the American Public Health Association (APHA) is accepting abstract submissions for next year's annual conference. The deadline date is February 7, 2001.
Data and Statistics Update: Ronald Manderscheid, Ph.D., Survey and Analysis Branch, CMHS
Dr. Manderscheid reported to the group on various activities including:
- MHSIP Report Card Version 2 is in development.
- The 16-State Pilot Project will conclude this year and will be linked to the block grants.
Some of the challenges include:
- Web-based outcome measures
- Web-based performance indicators
Questions posed to the Subcommittee:
- Will the consumer and family perspective prevail?
- What are the roles for local institutions in delivery of care?
- Will the field have generally accepted quality tools?
- Will the field be integrated into primary care? How will this be done?
- What will be the role of bioengineering, neuroengineering, and genetic engineering?
- Will the mental health field exist in 10 years?
Mental Health Parity: Jeff Buck, Ph.D., Associate Director, Organizing and Financing Office, CMHS
The issue of insurance benefits is important in mental health. There are differences in benefits between general health and behavioral health care, especially those that apply to limits. Some of the information presented included:
Mental Health Parity Act of 1996
- Effective on January 1, 1998, and sunsets on September 30, 2001
- Parity laws passed by more than 30 States
- Some States having only passed laws that conform to the Federal law
- Laws differ by covered conditions, providers, and benefits
Many state laws fall short of full parity and differ in definitions. Often, these mandates do not apply to small businesses and self-funded plans.
What does parity cost? The overall costs of parity are less than 5 percent. As a result of parity, some plans may increase the use of managed care which can result in a net decrease in costs. The cost-offset effect does not reduce the costs of parity, and parity does not result in a public-private cost shift. Partial parity is less expensive than full parity and parity for serious mental illness is a little less expensive than full parity. Substance abuse parity is less expensive than that for mental health. In addition, parity is important for those who use many services.
Federal Employee Health Benefits (FEHB) parity:
- One of the largest health insurance plans in the Nation with 8.6 million enrollees
- The Office of Personnel Management sets the rules for benefits and participating plans
- All plans are to have full parity for mental health and substance abuse
- Parity applies to those who are part of the in-network benefits
Potential Issues:
- Out-of-network benefits
- Exception for failure to comply with treatment plan
- Network adequacy
- Utilization management and medical necessity
FEHBP parity is undergoing an evaluation by a research team of ROW Sciences, Westat, RAND, and the Harvard Medical School.
Parity will not be fully accomplished through legislative mandates because a large number of employees will not be affected by the parity law—those who have no coverage and those employed by small businesses.
Olmstead Activities: Carole Schauer, Eugene Wolfe and Marie Danforth (CMHS)
The Supreme Court decision in Olmstead focused on the community integration of people with psychiatric disabilities. Some of the identified barriers to community integration include:
- Lack of housing
- Transportation
- Employment
- Followup health care and discharge planning
- Processes or procedures by Federal Government agencies.
A Coalition on the Community Integration of People with Psychiatric Disabilities was formed on December 14, 2000 composed of more than 60 public and private organizations.
Public Comment
Brian Coopper, Senior Director of Consumer Advocacy, National Mental Health Association (NMHA)
Mr. Coopper congratulated the members of the subcommittee and encouraged them to pursue their work with a sense of urgency. He also expressed the interest of NMHA in recognizing and documenting the history of the consumer/survivor movement, psychiatry, and the history of NMHA. The organization is looking for a new location and will designate space for a museum.
Irene Lynch, Alepos Foundation
Ms. Lynch shared with the group her support for a Montessori educational environment for children.
Discussion of Possible Recommendations
Three recommendations were presented for the Subcommittee's consideration:
- Develop guidelines to determine who is a consumer/survivor.
The Subcommittee voted against this recommendation.
- Gather data on civil commitment both for inpatients and outpatients.
The subcommittee voted in favor of this recommendation.
- Develop a central library for recovery literature.
The group voted in favor of this recommendation.
Future Agenda Topics
The following are suggestions for future agenda topics:
- Communities of faith—alternative medicine
- An invitation for the media to attend a subcommittee meeting so that they can see how the group operates
- Personal assistance services and a discussion of how to access this service
- Consumer research
- Budget and grant information, including information on sole-source awards
- Review of the SAMHSA review process (competitive awards)
- More information on the New Freedom Initiative and an invitation to persons involved with the initiative.
The meeting adjourned at 4:16 p.m.
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