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Mental Health Programs
About CMHS
CMHS National Advisory Council Subcommittee
on Consumer/Survivor Issues
DoubleTree Hotel and Executive Meeting Center
Rockville, MD
February 5-6, 2002
Summary of Proceedings
Welcome and Introductions
Jon Brock called the meeting to order on February 5, 2002, at 10:00 a.m. Other members of the Subcommittee on Consumer/Survivor Issues (Subcommittee) present included Sylvia Caras, Ph.D., Kevin Fitts, Caroline Kaufmann, Ph.D., Juli Anne Lawrence, M.A. (by telephone), Donna Preston, Paula Stockdale, and Sharon Yokote. Subcommittee members alternated in serving as chairperson. Members introduced themselves and discussed highlights of their activities. Dr. Caras reported that the Centers for Disease Control and Prevention has created a work group to coordinate in-house mental health activities; the World Health Organization has released its World Health Report, which emphasizes accountability to consumers and recognizes the importance of the consumer voice; and consumers and survivors are expressing concern in Internet discussions about weakening of civil rights protections. The Subcommittee welcomed new member Paula Stockdale.
Center for Mental Health Services (CMHS) Director's Report
Bernard S. Arons, M.D., noted that CMHS is in a period of transition in funding and in staff's personal and workload adjustments to respond to the events of September 11 and the subsequent anthrax attacks; approval of a new administrator; presentation of the new administration's first major budget; and CMHS's restructuring and delayering process. He reported that although the Office of External Liaison, which supports consumer activities, will be ended, CMHS expects to run consumer activities within the director's office. Communications are handled now at the SAMHSA level. The administration's goal is to consolidate policy and budget decisions under the control of political appointees; the Substance Abuse and Mental Health Services Administration (SAMHSA) will make policy, while CMHS will address program activities. Dr. Arons described SAMHSA's ongoing strategic planning process.
CMHS will test best practices on restraint and seclusion in residential facilities and produce consumer/staff training manuals. CMHS will launch a new anti-stigma/anti-discrimination center. Planning is underway for an African American and Mental Health Public Policy Forum meeting. President Bush's New Freedom Initiative includes a National Commission on Mental Health, members of which are expected to be announced soon. More than 800 persons attended a national training conference on homelessness. The National Employment Conference was successful; Nobel Prize winner John Nash was a participant. CMHS sponsored a followup summit to the September 11 events at which delegations from all States and territories discussed terrorism and mental health. The Baltimore Ravens, as part of the 15+ Program, will encourage dads to spend time with their children.
Congress's 2002 budget authorized $832 million for CMHS, including $5 million for aging services, $4 million for jail diversion, $2.5 million for developing States' capacity for first-responders to an emergency, funds for workforce training for people in the mental health area, specifically related to racial and ethnic disparities, $3 million for a national suicide resource center, $2 million for youth transition to adulthood. The budget approved the reissue of the Children's Services grant program and added $10 million to a program for PTSD in children and youth for a total of $30 million, and allocated $13 million in the block grant to States, plus an additional $9 million for 22 earmarked projects.
The President's FY2003 budget sets priorities for defense, biomedical research, and response to terrorism. SAMHSA's budget is online at www.samhsa.gov, with funds "straight-lined," as expected. CMHS funding shows a $7 million reduction in the area of Programs of Regional and National Significance. The budget shifts the expansion of mental health services away from knowledge development and toward service capacity and knowledge dissemination. Dr. Arons stated that CMHS will operate in accordance with the proposed budget, which is subject to change during the congressional budget process.
Discussion. Dr. Arons suggested that members offer input to SAMHSA staff members Darryl Kade, Gail Hutchings, and Greg Morris. He noted that the budget now calls for mental health services research by the National Institutes of Mental Health (NIMH). He suggested that this is an opportune time to make consumer issues known within NIMH. In response to members' strong concerns about addressing the adverse features of the budget vis à vis mental health and consumer/survivors, Dr. Arons noted the appropriateness of educating people on the issues. He stated that CMHS staff testify before Congress on consumer activities and priorities.
Old Business
Update on Vacancies. Paolo del Vecchio, M.S.W., Acting Director, CMHS Office of External Liaison, stated that vacancies exist on the Subcommittee and on the CMHS National Advisory Council (NAC). Resumes and suggestions should be submitted to Mr. del Vecchio.
Approval of Minutes. The discussion and recommendation to NAC regarding technical assistance centers is missing from the minutes of the Subcommittee meeting of September 5-6, 2001. Subcommittee members suspended approval of the minutes pending amendment.
Status of Recommendations. Dr. Caras reported that the Subcommittee's recommendation to support the technical assistance centers was approved by NAC.
New Freedom Initiative Update
Carole Schauer, M.S., R.N., Consumer Affairs Specialist, Office of External Liaison, CMHS
The U.S. Supreme Court's Olmstead Decision led in 2001 to the New Freedom Initiative (NFI) to promote community living for people with disabilities. The areas of assistive and universally designed technology, education, housing and home ownership, work and employment, transportation, and full access to community life are addressed in the NFI.
SAMHSA has evaluated current policies and regulations to identify barriers to people with mental health and substance abuse disorders moving into community living. At a "listening session" held by department heads, many Subcommittee members spoke about barriers, and several forums for community input were established. SAMHSA subsequently worked with the Department of Health and Human Services (HHS) to create a set of recommendations; "Delivering on the Promise: Preliminary Report of Federal Agencies' Actions To Eliminate Barriers and Promote Community Integration," including recommendations from 10 agencies, was presented to the President. Release of individual departmental reports is now awaited to see if additional specificity or clarification is identified to assist in the process.
Senior staff at HHS's Office of Disability and Community Integration oversee the development of policies and programs. The Centers for Medicare/Medicaid Services (CMS) have established a reform task force to promote barrier removal. HHS has established a 10-year Medicaid demonstration project to fund residential treatment centers for children.
Discussion. Members requested that staff provide copies of the report
on State activity regarding the Olmstead Act. CMS staff member Thomas
Hamilton and HHS Office of Civil Rights staff member Robin Sue Forbose
are contacts on consumer/survivor issues. Dr. Kaufmann and Ms. Yokote
discussed acknowledging and promoting the value of volunteerism within
the consumer/survivor movement, including career ladders and continuing
education units.
Subcommittee Logistics
Dr. Caras chaired a discussion on logistics, timeline, and staff duties. Ms. Stockdale recommended instituting an orientation process for new Subcommittee members. New members also may view the listserv and communicate with other members.
Subcommittees meetings have been held the 2 days prior to the NAC meeting. A square table is the desired shape, with guests seated to the rear near the entrance, not on the perimeter. The head of table should not be close to the entrance door. Committee members, guests, and markers should all be scentfree. The meeting contractor should talk to new members about preferences and accommodations. Issues related to disability and economics should be addressed by the contractor: They should offer creditcard guarantees to the hotel for individuals without credit cards and provide 24-hour telephone accessibility to solve hotel check-in problems. Travel advances should be available. Additional forms are needed to facilitate some processes. Telephone attendance and telephone votes by members are valid.
The standing agenda shall include introductions and updates, consent agenda, approval of minutes (sent to members sufficiently before the meeting for review), old business, recommendation updates, review of the NAC agenda, and public comment. Information packets should include biographies of Subcommittee members and a list of local support/emergency services.
Members agreed on an annual timeline: fall: half-day new member orientation preceding the meeting; winter/spring: review recommendations to prepare for the NAC meeting; winter/spring: conference call for new member appointments; spring: goal setting.
Subcommittee members asked CMHS staff to designate a Subcommittee contact person; record action items at meetings and track them to their conclusion; upon receipt of draft minutes from the writer, arrange to send them as soon as possible to Subcommittee members for approval; upon approval by the Subcommittee, post minutes on the Web site; send materials to Subcommittee members and track receipt; send NAC materials to Subcommittee members; compile a new member orientation packet; and continue use of rotating chair in absence of a standing chair. In addition, it was suggested that the Subcommittee assign a mentor to new members. The Subcommittee voted to request that CMHS staff draft a procedures and policies manual for the Subcommittee by May 1, 2002. The manual should include guidance on logistics for the meeting contractor, standing agenda, timeline, and Subcommittee expectations of staff.
CMHS Consumer-Operated Services Program (COSP) and Self-Help Survey
Crystal Blyler, Ph.D., Public Health Advisor, Division of Knowledge Development and Systems Change, CMHS; Jean Campbell, Ph.D., Research Assistant Professor in Psychiatry, Missouri Institute of Mental Health, University of Missouri-Columbia School of Medicine; Carolyn Lichtenstein, Ph.D., Research Director, Northrup Grumman Information Technology Health Solutions; Mark S. Salzer, Ph.D., Assistant Professor of Psychology in Psychiatry, University of Pennsylvania School of Medicine; Ingrid Goldstrom, M.Sc., Social Science Analyst, Division of State and Community Systems Development, CMHS.
Dr. Blyler noted concerns that a focus on evidence-based practices might work against COSPs that lack resources. Evidence-based practices involve trying to improve services through evaluation and applying knowledge. In 1993, under CMHS's Knowledge Development and Application program, CMHS initiated multisite studies to gather a large body of data simultaneously on services for people who are homeless, in jail diversion programs, and others. COSP, a rigorous evaluation of consumer-run programs, is in its fourth year of funding. By the end of FY2002, the project expects to have a complete, clean data set, and the first set of analyses will be conducted by the coordinating center. COSP hopes to secure a 1-year extension. The database, a one-of-a-kind national resource, will be publicly archived for use by researchers.
Dr. Campbell stated that the study is motivated by the value that research can and should enhance consumer choice, power, and knowledge. The study's policy implications include determining cost effectiveness, eliciting evidence for COSPs that seek to be partners in a community continuum of care; promoting new programs; improving quality of existing programs, and expanding services for people not easily engaged in traditional services; and in reducing costs. The study seeks to determine the extent to which COSPs, when offered with traditional mental health services, are effective in improving selected outcomes for people with severe mental illness (SMI); create strong and productive partnerships among consumers, service providers, and service researchers; and disseminate knowledge gained. Among the outcomes evaluated are employment, empowerment, housing, service satisfaction, social inclusion, costs, and well-being.
Dr. Lichtenstein discussed the complexity of the analysis; the project is in the data-quality assessment and measures-development stage. Consumers have participated in the development of the interview and the interview process. COSP is the largest study of consumer programs in history. Preliminary results show basic demographic information regarding marital status, disaggregated ethnic background, education, and diagnosis.
Dr. Salzer discussed the importance of the COSP project from sites' perspective. He noted sites' unofficial goals: to provide additional data to support evidence-based practices and to help project sustainability. He highlighted the value of research to provide legitimacy for evidence-based programs to secure funding and expand services.
Dr. Campbell noted that COSP project challenges included unexpected effort and time required for collaboration among study constituents, resulting in delays and increased costs. The project completed 12-month followups in January 2001. They must still collect cost data, prepare COSP manuals, clean and complete the multisite database, analyze outcomes in longitudinal data, prepare the database for public domain, and disseminate the study findings. Dr. Campbell asked the subcommittee to recommend to the NAC that CMHS allocate sufficient funding to complete the initiative in order to support consumer services nationally. Materials may be downloaded from www.cstprogram.org.
Discussion. Dr. Campbell declined to predict outcomes of the study, but stated that individual stories show successes. One major lesson is that collaboration takes time and that the interpretive process is the key to learning from the data. It may reveal that some parts of the population may not have been served well by COSPs. Since people attend the programs as they desire, measuring "compliance" is difficult. The followup rate, at 4 months is around 70 percent and is hoped to be 90 percent. Because funding is uncertain to finish the project, staff are leaving. Dr. Blyler stated that multisite studies are exempt from GPRA requirements to report data on the programs' success. Mr. Brock noted the importance of work to legitimize the consumer/survivor movement. Dr. Campbell stated that not all costs were anticipated, and the study would need 5 percent of the overall budget to fund the coordinating center an additional year and for sites to complete data collection and cleaning.
Ms. Goldstrom reported that Dr. Ron Manderscheid currently is working on conceptualization and measurement of recovery, second-generation Mental Health Statistics Improvement Program consumer report card and consumer survey, and the 5x5 Initiative. The goal of the 5x5 Initiative is that by 2005, 5 percent of all money spent on mental health services will go to consumer-operated services.
CMHS is conducting a survey to determine the number of mutual support groups, COSP, and self-help organizations in the United States, and to describe their funding mechanisms, history, and other characteristics. Many people and organizations are involved with development of the survey. The study will analyze the 171 counties participating in the National Comorbidity Survey. An exhaustive search for organizations has been conducted. Ms. Goldstrom solicited assistance from Subcommittee members in identifying groups in the 171 counties to participate in the survey. Her e-mail address is igoldstr@samhsa.gov.
Response to the Mental Health Needs of September 11 and the National Child Traumatic Stress Initiative Ms.Yokote chaired this segment of the meeting.
Report on Consumer/Survivor Reactions to September 11. Disaster and Crisis Mental Health: The Federal Perspective for Community Response. Beth Nelson, M.S.W., Branch Chief, Emergency Services and Disaster Relief Branch, CMHS; Malcolm Gordon, Ph.D., Special Programs Branch, CMHS
Ms. Nelson described the Federal Emergency Management Services (FEMA) model of emergency response, a collaboration of Federal, State, and local agencies. FEMA's emergency response partners include the Department of Justice's Office for Victims of Crime, Department of Veterans' Affairs' National Center for PTSD, National Transportation Safety Board's Office of Family Affairs, Department of Education's School Emergency Response to Violence, NIMH, Environmental Protection Agency, and Federal Occupational Health Service. Among the services provided are disaster mental health services, mental health services for victims of crime, training and education, and emergency preparedness.
Crisis counseling attempts to return disaster victims to pre-disaster levels of functioning, to validate the appropriateness of their reactions, and to normalize their experience. Among the populations served are children and youth, older adults, people with disabilities, people with SMI, people with low socioeconomic status, cultural and ethnic groups, and disaster workers.
Consumers may be trained in the preparedness process and should be given the opportunity to serve the larger community. Model peer support programs were developed following the 1995 Oklahoma City bombing, the 1994 Northridge earthquake, and 1992's Hurricane Andrew; model programs have served thousands of people. Ms. Nelson described New York Project Liberty, www.projectliberty.state.ny.us/ and mentalhealth.samhsa.gov.
Several approaches for the mental health components of disaster relief include the following: be proactive and become a key stakeholder; develop pre-disaster plans, agreements, and relationships with the State mental health authority (SMHA) and FEMA; establish a comprehensive system for referrals and a directory of community resources (e.g., health care, transportation, housing); maintain a roster of peer counselors and linkages with other key provider agencies; develop a library of cultural competence disaster mental health educational materials and resources. She pointed to the CMHS brochure "Responding to the Needs of People With Serious and Persistent Mental Illness in Times of Major Disaster."
Discussion. SAMHSA is making available to States funds for pre-incident
planning to create services infrastructure in local communities. SAMHSA
is also developing protocols for residential facility evacuations and
medication distribution processes; the New York experience is expected
to produce lessons learned. Ms. Nelson acknowledged Mr. Brock's view
that the FEMA disaster model for mental health services may have great
value for traditional services. Well-run crisis-counseling programs
in local community mental health centers—with names that do not
immediately suggest mental health—engage the community and serve
as a valuable support service. Ms. Preston identified the need for
Federal funding for mental health services in times of disaster. CMHS
recognizes the need for a thorough needs assessment by SMHAs to determine
systems' capacity to serve people who enter the mental health system
for the first time. An important concern is not to raise false expectations.
Ms. Nelson stated that SAMHSA and CMHS must educate the public on the
psychological impact of future terrorism.
Ms. Nelson noted Administrator Curie's commitment to maximizing resources for mental health and substance abuse. Dr. Caras urged a focus on prevention in preparedness education. Ms. Yokote described information on crisis preparedness for mental health consumers in Mary Ellen Copeland's Wellness Recovery Action Plan at www.mentalhealthrecovery.com. Mr. Fitts noted the disruption to mental health of nonspecific Government warnings and alerts related to terrorism. Ms. Nelson suggested contacting the www.whitehouse.gov Web site with these concerns and welcomed suggestions from Subcommittee members.
Dr. Gordon described CMHS's new National Child Traumatic Stress Initiative, a national effort to improve treatment and services for child trauma, to expand availability and accessibility of effective community services, and to promote better understanding of clinical and research issues relevant to providing effective interventions for children and adolescents exposed to traumatic events. Emotional stress reactions can produce long-lasting effects on children's mental functioning, including their ability to master developmental milestones.
The initiative addresses the mental health effects of all types of trauma that children experience. It looks at trauma in child welfare, foster care, protective services, juvenile justice, and other systems. The initiative has funded 18 centers to develop better evidence-based treatment and services for children who have experienced trauma in infancy through adolescence, including a coordinating center co-hosted at the University of California Los Angeles and Duke University, 5 clinical research centers, and 12 community practice centers. The components will collaborate to find and implement the best approaches to improve treatment and services. The treatment services development center will evaluate models for different services for different traumas at different ages, develop training models and approaches for service providers, and take the lead in developing a clinical database. A Web-based resource center will provide training and information for families, practitioners, and adolescents, and will help develop resources, training, recognition, and public education on the effects of trauma on children.
The Federation of Families is a consultant to the National Child Traumatic Stress Initiative. Extensive involvement of consumers and family members is envisioned vis à vis various types of trauma. The program will expand, with $10 million to be added for more centers in the network, which includes both federally and privately funded programs that provide services.
Discussion. Dr. Gordon stated that the chronic traumas of poverty
and divorce are to be investigated in the initiative, along with acute
trauma and repeated adverse events that overwhelm the coping capacity
of the individual, including child abuse, certain medical treatments,
and disability. He noted that a range of disassociative symptoms emerge
from traumatic events. Dr. Gordon can be contacted at mgordon@samhsa.gov.
CMHS Funding Issues
Dr. Caras, chair of this discussion, noted the Subcommittee's charge to advise and educate the CMHS NAC. Subcommittee members and consumer advocates expressed concern about the lack of funding for consumer-operated technical assistance centers and the Community Action Grant program in the President's proposed FY2003 budget. They discussed the possibility of alternative mechanisms to support the consumer movement and its activities.
Mr. Fitts suggested that the Subcommittee recommend that the NAC adopt a resolution regarding reinstatement of funding. Dr. Kaufmann stressed the need for flexibility in addressing the change in political priorities. Mr. Brock suggested the necessity of speaking to the value of the consumer/survivor movement and the technical assistance centers that support it. Dr. Caras noted the importance of continuing funding for the five technical assistance centers and the possibility for extending the COSP project funding. Mr. del Vecchio noted that mechanisms other than the technical assistance centers can support the Alternatives Conference. Dr. Kaufmann suggested pushing for evidence-based practices. Dr. Fitts identified dangers in focusing only on evidence-based medicine because one size does not necessarily fit all for mental health rehabilitation.
Larry Belcher of CONTAC noted that technical assistance centers have improved inter-center communications. He noted the need for advocacy for continued funding for consumer groups. Amy Campbell, Executive Director, National Mental Health Consumers Self-Help Clearinghouse, noted that 18,000 people in their database are at increased risk if the centers lose funding. Laurie Ahern, National Empowerment Center, asserted that the budget reflects the impact of the consumer/survivor movement and urged support for the voice and work of consumer/survivors. Ellen Alderton, National Mental Health Association Technical Assistance Center, pointed out that consensus building is a process by people with different viewpoints; five centers reflect the fact that not all consumers have the same opinions or needs in programming and work. Elizabeth Edgar, National Alliance for the Mentally Ill, noted the value of the Community Action Grant program. Dan Fisher, National Empowerment Center, noted the importance of a variety of voices and of working toward common ground to recognize differences. He recognized the difficulty for consumer/survivors to get to the table of significant policy proportions on such major issues as Medicaid/Medicare, housing, and Community Action Grants. He suggested asking consumers to offer input on the proposed budget. Kathy Muscari, CONTAC, reiterated the importance of funding for consumers/survivors.
Mr. Brock pointed out the inconsistency of establishing the National Commission of Mental Health at the same time that the President's proposed budget signals the end of Federal support for the consumer movement. Ms. Preston noted the need for large numbers of individuals to make their viewpoints known about the nationwide constituency represented by technical assistance centers, which represent the national consumer movement.
Mr. del Vecchio briefed the Subcommittee on the Federal budget process. SAMHSA submits a proposal to HHS and the Office of Management and Budget (OMB) in the spring. OMB returns comments the following autumn. HHS and the administration propose funding levels for the presidential budget. Hearings on the budget are held before the House Appropriations Committee for HHS. The Senate may or may not hold hearings for SAMHSA. Typically the House and Senate develop their own budgets by summer; a conference committee comes to consensus sometimes by September, but sometimes later. When the budget passes late, HHS operates on continuing resolutions. The entire appropriations bill goes to the President, who could veto the budget.
Ms. Stockdale pointed out that technical assistance centers have helped to move many people to their high levels of functioning today. Dr. Kaufmann suggested endorsing the concept behind participation in the design of services by people who are affected by the services, on the model of the Arthritis Foundation or the Autism Foundation. She noted the possibility of endorsing initiatives at the Federal and State levels that involve consumers and families in the design, development, delivery, and evaluation of mental health services. Ms. Muscari noted that an evaluation of technical assistance centers show a 3:1 ratio of cost effectiveness. The discussion was continued the following day.
The meeting adjourned at 6:35 p.m. and reconvened at 9:00 a.m. the following day.
SAMHSA Administrator's Report
Joseph H. Autry III M.D., Deputy Administrator, SAMHSA, described Administrator Curie's three-pronged focus—developing and delivering citizen-centered, results-oriented, and market-based services. Staff are engaged in strategic planning. The agency's restructuring and delayering process will centralize authority in the political appointee to enable the appointee to be SAMHSA's chief lobbyist to bring mental health to the radar screen of the Administration and Congress.
Dr. Autry acknowledged concern with the FY2003 budget's defunding of the consumer-based technical assistance centers, in the context of changing political priorities, noting that the issue will remain on the table as the iterative and partisan budget process progresses. Budget information is available at www.samhsa.gov. Dr. Autry introduced a draft matrix of program priorities that currently includes co-occurring disorders, the substance abuse treatment gap, seclusion and restraint, prevention/early intervention, children's agenda, NFI, terrorism/bioterrorism, homelessness, aging, HIV/AIDS, and criminal justice. Cross-cutting principles include evidence-based outcomes, collaboration, recovery/antistigma, cultural competence, community- and faith-based, violence (e.g., physical and sexual abuse), and private-sector funding partnerships.
SAMHSA staff are evaluating potential barriers to increased emphasis on faith- and community-based efforts and are developing outcome measures and determining effectiveness and cost effectiveness.
Discussion. Dr. Autry expects the national mental health commission to include consumers. He stated that the commission will be an unprecedented national-level forum at which prevention, intervention, recovery, and reintegration will be considered as Congress watches the proceedings. Mr. Brock suggested adding citizen involvement to the cross-cutting principles; Mr. Autry stated that "collaboration" tries to capture that concept. Mr. Brock urged that private-sector involvement help consumers become providers; Dr. Autry noted that this practice has been ongoing in the substance abuse field. Dr. Caras suggested adding "discrimination" to "stigma" in the field matrix. She acknowledged the need for early intervention initiatives, but cautioned against presymptomatic interventions. Dr. Autry stated that public hearings on NFI were held in August/September and that terminology will be important to build stronger alliances. Dr. Autry acknowledged Dr. Kaufmann's suggestion that SAMHSA highlight the efforts of consumers and family members as volunteers and in self-help groups in communities. He noted that SAMHSA is a partner with criminal justice to improve and expand treatment options and planned re-entry into communities to prevent recidivism. Ms. Yokote noted the lack of continuity of care at the State and county levels, which often operate on a crisis-to-crisis basis. She urged Dr. Autry to consider a focus on career ladders and on awarding Continuing Education Units (CEUs) for volunteer work. Mr. Brock noted that traditional services focus on maintenance while the consumer movement moves toward recovery.
Centers for Medicare and Medicaid Services
Peggy Clark, M.S.W, M.P.A., Technical Director, Division of Integrated Health Systems, CMS; Linda Peltz, CMS; Frank Sullivan, Ph.D., Senior Advisor for Mental Health and Substance Abuse, CMS. Acting chair: Ms. Stockdale
Ms. Clark explained that Medicaid provides low-income and disabled Americans with health-related benefits in a Federal-State funding partnership that differs from State to State. Medicaid is a major source of funding for mental health and other support services. NFI will affect Medicare/Medicaid programs in a manner to be determined. CMS provides oversight for State Medicaid programs and providers. It ensures that managed care programs comply with Federal requirements and that monitoring activities take place. CMS is developing internal tools to assess State compliance. An updated draft internal monitoring guide includes a new section on mental health systems.
Ms. Peltz noted that Medicaid involves 50+ different programs, each with different services, benefits, and populations covered. The challenge in times of budget crisis is to encourage States to continue to use funds for mental health services; most State mental health services are optional. States fund non-Medicaid services. Rehabilitation is one of the most flexible benefits, but a number of limitations constitute barriers to care. Many States provide assertive community treatment (ACT) for people released from hospitals. Medicaid funds children's services; all States have school-based mental health services for children. States are paying attention to mental health services, but funding will be an issue to continue them.
Dr. Sullivan explained that the Medicare program amounts to $300 billion, with Medicaid at $1.5 billion. Controlling fraud and abuse is a top priority. Medicare's 34 million beneficiaries are individuals eligible at age 65+ or recipients of Social Security Income (SSI) disability who have contributed to the Medicare trust fund. Six percent of Medicare beneficiaries are on the rolls for mental health or substance abuse (co-occurring disorders). Fiscal intermediaries and carriers administer Medicare. Medicare's inpatient model coordinates care poorly for chronic conditions other than diabetes. Medicare does not cover outpatient medications and limits inpatient mental health benefits to a lifetime maximum of 190 days, but imposes no limit for other diseases.
Discussion. Dr. Caras noted that ACT often is coercive. Dr. Sullivan stated that if a policy were formulated, the Federal government would not pay for treatment in violation of a person's civil rights. He noted the existence of cash and counseling waivers for personal care. Ms. Peltz stated that interest exists in the waiver program to focus on people with psychiatric conditions. She suggested contacting Mary Jean Duckett, Home and Community-Based Waivers Program, mduckett@cms.hhs.gov. Ms. Clark noted that Bright Futures is a good educational tool for pediatricians and other providers on mental health needs of children and adolescents. Ms. Clark noted that Kathy Rama heads a beneficiary advocacy group, and suggested that CMS regional offices are additional resources for support and technical advice. Mr. Brock urged CMS involvement in the consumer/survivor movement, particularly in trying to reduce ACT, ending use of the medical model, promoting coverage for pharmaceuticals, and facilitating transition of participants into the larger community. Ms. Clark stated that most changes take place in the legislative arena. Dr. Sullivan stated that the key is to show that mental health programs can save money. CMS aims to help State Medicaid programs show how alternative services can save money. Ms. Peltz noted that successful programs occur where states cooperate with mental health, housing, juvenile justice, and social welfare service agencies. Dr. Sullivan noted that gap insurance typically covers prescription drugs; around 40 percent of people have Medi-gap insurance.
Strategic Planning for SAMHSA/CMHS
Services for Older Adults. Iris Hyman, Consumer Affairs Specialist,
CMHS, discussed the strategic planning process for services for older
adults. Many stakeholders and Federal agencies have provided input, and
a SAMHSA planning group has evolved. CMHS Director Arons will review
the draft strategic plan for services, policy, training, and research,
adapting it to the priority matrix. Among the issues to emerge from the
strategic plan are how to encourage primary care physicians to deal with
mental health and substance abuse issues among the older adults they
see, and medication misuse and over-use. The Older Adults Consumer Mental
Health Alliance has been established. Five million dollars has been earmarked
in the 2002 budget for the Older Adults Initiative. She noted that about
20 Federal stakeholders attended the first strategic planning meeting
on the initiative; other meetings included consumers, providers, and
other stakeholders. Ms. Hyman can be reached at ihyman@samhsa.gov.
Services for People Who Are Homeless. Phyllis Wolfe, Ph.D., Special Expert, Homelessness Programs Branch, CMHS, discussed the strategic planning process for her Branch, which aims to establish services to reduce and eliminate homelessness among persons with mental illnesses or substance abuse who are homeless. At the first national training conference on homelessness among people with mental illnesses and substance abuse, 80 of the 800 attendees were consumers, of whom 30 were involved in planning and 30 attended on scholarship. A policy academy is planned on chronic homelessness. Evidence-based practices have been developed based on demonstration programs that now will be disseminated. The branch is working on issues related to co-occurring disorders along with the Community Support Program. Training and habilitation are the cornerstones of success, recovery, and empowerment; an effort is underway to engage consumers in the work on reducing homelessness. Dr. Wolfe described social marketing efforts to disseminate materials and information and solicited feedback from Subcommittee members on several draft documents.
Discussion. Dr. Wolfe noted that homelessness is tied to insufficient housing stock for people with low income and lack of community services. Gentrification, deinstitutionalization, decline of the industrial economy, and "Greyhounding" people with psychiatric symptoms out of town are additional elements of the problem of homelessness. Dr. Wolfe's focus is to engage local community leadership and mental health association board members in educating community leaders on ways to create change. Ms. Preston noted the disproportionately high percentage of veterans in the homeless population. Dr. Wolfe stated that it appears that in the past, some people have not been served properly while in the military. She noted that DVA is a partner in trying to solve the problem of homelessness and is delivering appropriate services.
SAMHSA and CMHS Strategic Planning. Paolo del Vecchio, M.S.W., Acting Director, Office of External Liaison, CMHS, and Subcommittee members discussed the CMHS strategic planning process. Subcommittee members agreed that the phrase "caring for" in the draft sounds paternalistic; substitute language included "empowering," "enriching," "supporting," "promoting," and "assisting." Ms. Preston noted the need to look at whole systems, to include consumers, and to measure recovery, in the objectives for capacity and effectiveness. An objective for capacity is to promote people out of the system. Statistics are needed to show that people have made changes; these data would include community integration, recidivism, amount of time in the community, and quantified supports. A discussion section will be added to the listserv for quick feedback. Mr. Brock noted the disease-oriented organization of the planning process, with occasional references to consumers to promote health of persons and communities. Funding seems to be directed into the medical model, which prevents citizen involvement by promoting an evidence-based model.
Mr. del Vecchio expects a consumer affairs component to be run out of the Office of the Director. Ms. Yokote urged talking about mental health instead of mental illness; in the wake of September 11, people seem more open to seeking help. Dr. Caras pointed out that NAC is legislatively mandated. Mr. del Vecchio stated that it is at the council's discretion to establish a subcommittee, but availability of funding is a consideration. He noted that consumer/survivor activities are progressing, including engaging faith- and consumer-based organizations and planning for two regional consumer meetings (Chicago in early May and Denver later).
Subcommittee Logistics (continued)
Members added to the list of protocols begun the previous day: Subcommittee meeting should be scheduled just prior to and at the same location as NAC meetings. Meetings have been starting at 10:00 on the first of two days. Public comment is mandatory only at public comment time; at any other time, the public may participate in discussions at the discretion of the chair. Ms. Preston suggested that members comment on the CMHS strategic planning document on the listserv. Mr. Brock recommended reading documentation on the NFI to determine its views on the consumer/survivor movement. The underlying premise is to lower expenditures, which means mean adapting language to its tenets. Dr. Caras suggested that the future agenda include discussion about a unified vocabulary, all methods to continue the Subcommittee, and increased Subcommittee connections to the NAC by means of meeting or reception.
Public Comment
Ms. Yokote chaired this segment of the meeting.
Brian Coopper, Senior Director, Consumer Advocacy, National Mental Health Association. Speaking as an individual citizen, Mr. Coopper stated his view that funds should be available for consumer-run programs and programs that support consumers. The funds that support Community Action Grant programs represent merely seed money compared to the magnitude of other areas of the budget. He viewed the cuts as the death knell to Alternatives Conferences run by consumer technical assistance centers. He noted that, whereas Medicaid pays for AZT for AIDS patients and whereas AIDS affects far fewer people in this country than people with challenges to their mental health, mental health medications are not covered.
Joseph Rogers, Mental Health Association of Southeastern Pennsylvania. Mr. Rogers discussed the omission in the President's budget of funding for consumer-run, self-help, and mutual support groups. He urged support for recovery principles. He noted that grassroots consumer representatives made a strong case to the SAMHSA Council to restore funding.
Daniel Fisher, Co-Director, National Empowerment Center. Mr. Fisher pointed out that the overriding principles laid out by Mr. Curie involve recovery, antistigma, and community integration, which cannot be approached without the genuine participation of consumers. Program funding is linked to the principles and mission of the department. He urged the subcommittee to raise as an issue the provision of funding for technical assistance centers and for Community Action Grants, so there may be a process of involving stakeholders.
Discussion. Mr. Fisher noted that in January, 10 consumers and advocates met at the White House with Jennifer Sheehy and Filo Hall of the Domestic Policy Council on disabilities and mental health, respectively. Filo Hall will be the contact on the new commission.
NAC Agenda and Recommendations
The Subcommittee proposed and passed the following recommendations to CMHS NAC:
The National Advisory Council Subcommittee on Consumer/Survivor Issues recommends that the CMHS National Advisory Council resolve the following: "CMHS supports programs that involve consumer/survivors in the design, delivery, and evaluation of services; the availability of resources for national training of consumers; and the existence of vehicles for community initiatives that promote consumer involvement in services."
The Consumer/Survivor Subcommittee recommends that NAC reaffirm the following recommendations previously adopted by the National Advisory Council at the September 2001 meeting:
- Continue grant support at current funding levels or higher for a minimum of five national consumer technical assistance centers, of which at least three are consumer operated.
- Initiate knowledge, development, and application efforts in the area of mental health on consumer-directed, self-determination models such as personal care attendants, voucher programs (e.g., cash and counseling), individualized budgeting, etc., that have been successfully demonstrated by persons with physical/developmental disabilities and older adults.
The Consumer/Survivor Subcommittee recommends that CMHS endorse the 10 recommendations made by the National Council on Disability in its document From Privileges to Rights: People Labeled With Psychiatric Disabilities Speak for Themselves, published January 20, 2000.
The Consumer/Survivor Subcommittee recommends that CMHS provide consumer scholarships for all conferences that receive funding support from CMHS.
The Consumer/Survivor Subcommittee recommends that CMHS develop guidelines to enable providers and consumers/survivors to earn CEUs that meet formal knowledge eligibility requirements. Providers should be able to earn CEUs for learning from the first-hand experiences of consumers/survivors receiving services. Consumers/survivors should be able to earn CEUs for voluntary national service, experiential presentations, advocacy activities, and other relevant activities.
The Consumer/Survivor Subcommittee recommends that CMHS support parity for mental health reimbursement for voluntary services.
The meeting adjourned at 3:25 p.m. Tentative dates for the next Subcommittee meetings: June 17-18, 2002, and September 3-4, 2002
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