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Meeting Minutes
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The President's New Freedom Commission on Mental Health met on February 4-6, 2003 at the Crystal Gateway Marriott, 1700 Jefferson Davis Highway in Arlington, Virginia. In accordance with the provisions of Public Law 92-463, the meeting was open to the public on February 4th from 1:00 p.m. to 3:30 p.m., on February 5th from 8:30 a.m. to 12:00 p.m. and on February 6th from 8:30 a.m. to 12:30, when the meeting adjourned. Commissioners present: Michael F. Hogan, Chair Staff members present: Claire Heffernan, Executive Director Presenters and consultants who attended portions of the meeting included: Jean Campbell, Ph.D., Missouri Institute of Mental Health February 4, 2003Work SessionAt 1:10 p.m. Chair Hogan convened the President's New Freedom Commission on Mental Health. He requested a moment of silent reflection about the recent space shuttle Columbia disaster, noting the emotional impact on the country. Report of the Subcommittee on Housing and HomelessnessCommissioner Randolph Townsend, Chair of the Subcommittee on Housing and Homelessness, joined the Commission Meeting via telephone to provide his subcommittee report. Ann O'Hara, who served as consultant to the subcommittee along with Lynn Aronson, was present to respond to any questions posed by Commissioners. Commissioner Townsend described the lack of decent, safe, affordable,
and integrated housing as one of the most significant barriers to
full participation in community life for people with serious mental
illness. He observed that addressing housing needs and preferences
for people with serious mental illness was not just about providing
bricks and mortar but also about providing support services to keep
people in housing.
The Subcommittee emphasized the importance of addressing the serious housing affordability problems of people with severe mental illnesses with extremely low incomes. Progress toward this objective would significantly advance the President's goal of ending chronic homelessness and greatly impact the crisis of inadequate housing and homelessness among people with severe mental illness. The Subcommittee on Housing and Homelessness endorsed the following
policy options:
Commissioner Carlile followed Commissioner Townsend's report by highlighting some of the housing proposals contained in the President's 2004 budget. She reported that the budget consolidates and simplifies many programs, as well as provides a budget increase to $1.5 billion. Commissioner Carlile also commented that several of the activities referenced by Commissioner Townsend are already underway within HUD. HUD recently released a $35 million program announcement (funded by HUD, HHS, and VA) to encourage partnerships which would end chronic homelessness. The 2003 budget also contained a $50 million set-aside for the Samaritan Housing program for people who are disabled and chronically homeless. And, while the budget funding level remains level (i.e. no increase for FY 2004) the Section 8 program is being reformed to devolve control to states, promote partnership with states, and create more efficiencies. Subsequently, Commissioners engaged in a discussion about the Subcommittee's report. Commissioner Godbole, who co-chaired the Subcommittee on Older Adults, wondered if it was possible to align funding sources (e.g., Medicaid and HUD) to ensure that older people are in appropriate housing. Chair Hogan suggested that the question be tabled until more is learned about the Administration's proposed Medicaid reforms which Commissioner Smith would discuss at the following day's Commission Meeting. Commissioner Carlile added that Section 8's Housing Assistance for Needy Families program might assist some elderly people who are inappropriately housed. Commissioner Knight-Richardson commented that inadequate and inappropriate housing are major concerns for poor individuals, particularly those who belong to ethnic and cultural minority groups. He stressed the need for cultural sensitivity and an understanding of the importance of community when providing housing options for individuals who are ethnic and racial minorities. Commissioner Carlile added that HUD funding for case management may help with addressing cultural and community concerns around housing. Commissioner Hogan remarked that the Federal government cannot solve the immense housing problems alone, particularly as housing occurs in communities which are varied and diverse. The Commission may want to address its recommendations to local communities, as well as the Federal government, and promote technical assistance that fosters collaboration. He stated further that there should be a stronger expectation that state mental health systems focus on housing and that public housing authorities collaborate with the mental health community. Commissioner Fisher observed that surveys of persons with mental illness indicate that consumers want permanent housing. He requested that the Subcommittee mention the role of peer support in its technical assistance section as a network of social contacts is critical for housing and community integration. Peer support and other forms of informal support are vital so that people do not rely forever on the mental health system. He also suggested that it would be helpful to form advisory groups of consumers who have lived in publicly-funded housing to advise housing decision-makers. Commissioner Harbin requested an explanation about the "Mental Health Action Plan" referenced in policy option #5. Ms. O'Hara explained that 1999 HUD budget language called for HUD to develop a Mental Health Action Plan, a plan which has not yet been completed. The aim of the Subcommittee's policy option was to use the Plan as a vehicle to convene Federal housing and mental health systems and to encourage and incentivize partnerships at local levels. Commissioner Godbole requested that the Subcommittee strengthen the reference to the important link between stable housing and access to and adherence with treatment. The specialty mental health community does not yet appreciate that stable housing allows consumers to form the trusting relationships necessary for treatment. Commissioner Huang asked whether the Department of Education (DOE)
should be included as one of the partners involved with developing
the Mental Health Action Plan given the increasing number of families
who are becoming homeless and the ensuing disruption of the children's
education. Ms. O'Hara responded that, Commissioner Knight-Richardson commented that stigma and community resistance have a great impact on housing opportunities for people with mental illness. For housing options to be implemented successfully, anti-stigma efforts also are needed. Commissioner Hogan raised the idea of adopting a strong stance against discharging people from facilities back into homelessness. Acknowledging the controversy around such an idea, he invited feedback from Commissioners. Commissioner Mayberg responded that, while the concept is excellent, the practice may have unhelpful consequences. Unless there are sufficient housing resources, such a policy would be difficult to implement and enforce. Commissioner Lerner-Wren commented that a lack of additional resources should not preclude examining the issue. She suggested there is room for improvement around discharge practices (e.g., standards, better education) in both facilities and jails. Commissioner Insel asked whether the Subcommittee on Housing and Homelessness addressed the issue of people with mental illness who would not accept a housing placement and the possibility of compulsory housing. Chair Hogan expressed the belief that the number of individuals who resist housing becomes extremely small in communities that implement effective housing strategies. The larger concern is that the system seldom offers housing choices that people find acceptable. Commissioner Carlile indicated that HUD utilizes the estimate that 150,000 - 200,000 people are chronically homeless and might be considered "resistant." Chair Hogan suggested that the concept of involuntary housing was
a nonstarter idea because it was a form of commitment without any
treatment. The current "Housing First" initiatives are testing
the premise that providing voluntary housing engages people into further
services. Commissioner Harbin queried whether the Subcommittee was aware of the number of people who refuse housing. Commissioner Mayberg commented that California estimates that 15 percent of individuals reject placement in housing programs with supports. Almost all of these individuals have co-occurring mental health and substance abuse disorders and are not ready to accept the obligations associated with maintaining housing. Commissioner Fisher indicated that the Commissioners' discussion touched on why and how people accept services. The Subcommittee should reinforce the value that people be able to choose their housing and not have to submit to excessive regulations or obligations to keep their housing. He remarked that it would be a significant step if the Commission took a stand in support of the Housing First philosophy. Commissioner Godbole echoed Commissioner Mayberg's cautions about placing more pressure on the acute care system through additional discharge-related rules. Alternate Commissioner Hutchings agreed that while polices should not be inflexible or unworkable, current policies prohibiting discharge into homelessness should not be weakened. Commissioner Mayberg moved to accept the Subcommittee on Housing and Homelessness' report and the ensuing Commission discussion. Commissioner Godbole seconded the motion. The Commission unanimously voted its acceptance. A copy of the summary and policy options provided by the Subcommittee on Housing and Homelessness is available on the web site, www.MentalHealthCommission.gov. Report by the Subcommittee on Employment and Income SupportsJudith Cook, Ph.D., consultant to the Subcommittee on Employment and Income Supports, provided an overview of the employment concerns for people with mental illness. Dr. Cook's primary message was that people with mental illness could be contributing to the American economy, but most are trapped into long-term dependence on income support programs. Financial disincentives (e.g., the loss of medical and mental health care) coupled with nonexistent or outmoded vocational rehabilitation services keep people with mental illness from working and caught in a disability trap. Commissioner Jane Adams, co-chair of the Subcommittee on Employment and Income Supports, encouraged the Commission to provide national leadership around employment of people with mental illnesses. She highlighted the importance of enhanced employment outcomes through improved transition services in schools, and decried the wasted money on sheltered workshops and endless hours of career planning. She also emphasized the need to gather data and separate the numbers of people with mental illness versus other mental disabilities, served by vocational programs. Alternate Commissioner Mele-McCarthy outlined the Subcommittee's policy options. To facilitate discussion by the full Commission, the Subcommittee identified six key policy themes and suggested examples of policy options to illustrate each theme. In its final report, the Subcommittee will lay out a comprehensive menu of policy options for further consideration. Provide National Leadership. The Subcommittee urges the creation of a National Leadership Initiative on Employment for Youth and Adults with Mental Illnesses involving all levels of government, provider and professional associations, consumers, families, and the private sector. A National Leadership Initiative would maximize coordination of Federal efforts and resources and encourage partnerships among Federal agencies, their state partners, and the private sector. Policy options include:
Implement Or Revise Existing Federal Regulations. Federal agencies should work together with States to remove disincentives to employment and to facilitate access to quality vocational rehabilitation programs for youth and adults with mental illness. Examples of policy options include:
Increase Access to Mainstream Funding. To achieve the goal of better integration of youth and adults into the mainstream workforce, access to mainstream funding opportunities for this population should be increased. Policy options include:
Promote Increased Employment Outcomes Through Improved Transition Services in Schools. A well-educated student will become a competent and valued employee or a future entrepreneur. Improving transition services for youth with mental illness in public schools will result in increased graduation rates and better post-school outcomes. Policy options include:
Promote Innovation and Effective Services. Federal agencies should support demonstration projects and evaluation activities aimed at developing and promoting the adoption of evidence-based practices. Examples of such policy options are:
Promote Accountability Through Gathering And Sharing Data. Obtaining, understanding, and sharing data are critical to ensure maximum accountability within federally supported employment and disability programs. In addition, data is a powerful tool to assist youth and adults with mental illness as they navigate complex systems and make choices about their services. Data-related policy options include:
Commissioner Yates indicated her agreement with the proposal to separate data about children with emotional disorders from data about children with developmental disabilities. In her experience, the combined data did not capture the greater likelihood that children with emotional disorders fall through the cracks of the service system. She also praised the notion of flexible services for students at both the college level and high school levels. She has witnessed high school students with emotional disturbance achieving the most success when they have flexible programs allowing them to complete school work at home, hold jobs, and experience success in other environments than traditional classrooms. Alternate Commissioner Mele-McCarthy commented that she hoped that proposed education legislation also would promote such flexibility. She cited the need to help teachers and administrators understand the educational needs and possible output for these children. Chair Hogan noted that the upcoming reauthorizations for IDEA and the Rehabilitation Act provided excellent opportunities for examining and recommending applicable policy options. Alternate Commissioner Stanton questioned several of the policy options offered. Referencing the policy option encouraging states' use of buy-in opportunities, he commented that 27 states currently exercise that option through BBA or TWIAA. He inquired about additional actions that might extend the buy-in. He wondered if the Subcommittee was recommending extending the Medicaid buy-in by permanently expanding SSA eligibility regardless of whether states chose to pick up the buy-in option and, if so, how would that recommendation balance with the principle of federalism. Finally he noted that the issue of "creaming" is not an issue solely for the TWIAA program, but should be a concern throughout the federal-state vocational rehabilitation system. Dr. Cook responded that the policy options were crafted to encourage states that are not currently participating in the buy-in and to extend the buy-in to those individuals who do not participate in Ticket to Work. Regarding the creaming issue, she noted that the TWIAA legislation already called for a study on creaming, which is why the Subcommittee cited TWIAA specifically. However, the concern about creaming certainly is more widespread. Alternate Commissioner Stanton clarified that the Ticket to Work program has two components administered by different agencies: (1) Title I which provides individuals with "tickets" to purchase vocational services and (2) Title II which extends Medicaid coverage to TWIAA participants. The concern about creaming refers to Title I and the purchase of vocational services. Chair Hogan gave an example of how the federal government could provide incentives to states to elect the buy-in. If the federal government covered any increase in Medicaid costs experienced by states (because ultimately the federal government would save money if people returned to work), states might be more willing to participate. Commissioner Speck commented that she was pleased to learn about the Department of Education's initiative with the Chamber of Commerce. Interaction with Chamber members is an excellent opportunity to educate an important constituency about the needs and contributions of people with mental illness and to reduce stigma. Commissioner Pasternack responded that the partnership with the Chamber is in its early stages. The Department is forming such partnerships to become more fluent about the needs of the business community and to communicate that disability does not mean inability. Commissioner Fisher cited SAMHSA's Eliminating Barriers initiative as another resource for such collaboration. He suggested that the failure of TWIAA reflected the complex reasons that people do not return to work. Funding flexibility is important, but more incentives may be needed. Chair Hogan commented that demonstration projects with flexible funding may work in select states. However, flexible funding may not be sufficient in states that have more complex systems and strong local government control. He suggested that vocational rehabilitation programs will result in better outcomes when systems fund supported employment or individual job placements with supports. Commissioner Pasternack noted that the President's 2004 budget proposes merging the Projects with Industry and Supported Employment program within Title I of the Rehabilitation Act. He emphasized that such merging does not diminish the President's support for those programs. Commissioner Lerner-Wren mentioned that, in her court, she daily hears from people with mental illness who want to work. She stressed that the spirit of the Subcommittee's discussion was to develop a public-private partnership initiative as the driving force to implement change. Commissioner Harbin inquired whether, if all the Subcommittee's proposed policy options were implemented, the number of supported employment slots would increase for people with mental illness. Commissioner Pasternack suggested that the Commission's recommendations should not require states to increase the number of supported employment slots by a determined amount. Instead, the role of the Federal government should be to encourage states to adopt the supported employment model by providing data about outcomes. Chair Hogan remarked that the Commission may wish to adopt a robust employment recommendation that calls for national leadership, raises expectations around accountability, and encourages different kinds of partnerships. Better employment outcomes can be achieved if state mental health authorities prioritize employment outcomes, states restructure their use of Medicaid, and SSA adopts reforms to address financial disincentives. A "sea change" may be possible by redirecting current resources rather than appropriating new resources. Commissioner Pasternack reminded the group that supported employment began as a pilot project. Given the data supporting supported employment as a best practice, the question is now how to scale up the program and make it more available. Commissioner Harbin responded that, if the goal is to increase the number of supported employment slots, that goal needs to be clearly stated in the summary, including a method for accomplishing the goal. Chair Hogan stated that there is not a single funding stream that, if turned on, would achieve this goal. There are multiple funding streams needing redirection and program disincentives which need to be addressed. Commissioner Godbole suggested that models mentioned by the Commission, including supported employment, should undergo ongoing evaluation. Alternate Commissioner Hutchings clarified that SAMHSA considers supported employment to be an evidence-based practice. She commented that, as SAMHSA moves from block grants to partnership grants, efforts to provide more flexibility will include more expectations for accountability. Commissioner Pasternack suggested that there may be creative ways of implementing supported employment programs which do not necessarily require more federal funds. For example, the President's call to volunteerism may be an avenue for advancing the supported employment model. Commissioner Insel remarked that the Subcommittee's initial background
summary laid out a strong argument, yet the policy option section
lacked that sense of power and urgency. Perhaps the Subcommittee could
put forth more pressing recommendations. He also questioned whether
the Subcommittee addressed the issue of discrimination experienced
by federal employees due to mental illness. Dr. Cook responded that
the larger paper being prepared by the Subcommittee does contain a
policy option specifically addressing the concerns of Commissioner Adams observed that Commissioner Townsend was a key participant in the Subcommittee's discussions. In particular, he wanted the employment information to be compelling and ultimately placed in the hands of the business community. Commissioner Yates moved to accept the report provided by the Employment and Income Supports, a motion which Commissioner Speck seconded. The full Commission voted unanimously to accept the report. Chair Hogan closed the work session at 3:40 p.m. A copy of the summary provided by the Subcommittee on Employment and Income Supports is on the web site, www.MentalHealthCommission.gov. February 5, 2003Work SessionChair Hogan opened the work session at 8:40 a.m. Report of the Subcommittee on Children and FamiliesCommissioner Mayberg and Commissioner Huang, co-chairs of the Subcommittee on Children and Families, thanked their Subcommittee members for their efforts. Consultant Beth Stroul also was available to elaborate upon the report and respond to questions. Commissioner Huang indicated that the Subcommittee drew from multiple sources, including 250 organizations and individuals concerned about children and the varying perspectives of Subcommittee members themselves. Given this broad input, the Subcommittee chose to expand the scope of its discussions beyond children with serious mental disorders and also consider prevention and early intervention efforts. Mental health problems among children and adolescents constitute a public health crisis for our nation. The scope of this public health crisis can be characterized by the following: The problem of emotional disorders in children is large-20% of all children are affected-and seems to be growing. The human and financial costs of emotional problems in children are both broad and deep; they affect the children and their families, schools, communities, employers and the nation as a whole. Expenditures for mental health services in the specialty mental health and general health sectors alone were $11.75 billion in 1998. Youth with emotional problems are invariably involved with more than one specialized service system, including mental health, special education, child welfare, juvenile justice, substance abuse, and health; but no agency or system is clearly responsible or accountable for them. In response to this identified need, Commissioner Huang relayed that the Subcommittee seeks to advance a new vision for children's mental health that will make a real difference in the lives of children and their families. The vision calls for a commitment to promote the emotional wellbeing of children and ensure that children with emotional disorders live, learn, work, and thrive in their communities. The vision for children's mental health is one in which our communities, states, and nation provide access to comprehensive, home and community-based, family-centered services and supports for children with mental health disorders and their families, while at the same time creating conditions that promote positive mental health and emotional well-being and prevent the onset of emotional problems in all children. The Subcommittee highlighted ten policy options as essential strategies to begin building a better system to address the mental health needs of the nation's children. These ten, followed by implementation options, are the first steps toward achieving the Subcommittee's vision. In its final report, the Subcommittee will offer a more extensive blueprint for building the system. The policy options advanced by the Subcommittee on Children and Families included: Implement a Comprehensive Approach to Children's Mental Health at Federal and State Levels. The federal government and each state government should plan and implement a comprehensive, cross-agency, public health approach for promoting, preserving, and restoring children's mental health. The approach should focus on both strengthening services and supports for children with serious emotional disorders and their families, and on prevention and early intervention strategies for all children. Implementation options include:
Finance a Broad Array of Services and Support. Federal and state agencies and commercial insurers should realign funding policies related to children's mental health to support a comprehensive array of services and supports, including home and community based services and supports that are individualized, family focused, coordinated, and culturally competent. Implementation options include:
Strengthen Family and Youth Partnerships and Family Support. Federal, state, and local governments should ensure that families, substitute families, and other caregivers, as well as youth, are full partners and have substantial involvement in all aspects of service planning and decision making for their children at federal, state, and local levels. Implementation options include:
Individualize Care: A Single Plan of Care for a Child and Family. States should ensure that each child with a serious emotional disorder has an individualized, single plan of care (Individualized Service and Support Plan - ISSP) that addresses the child and family's needs across life domains and incorporates services and supports from all needed agencies and systems. Implementation options include:
Broaden the Range of Services and Supports and Build Capacity. Federal and state governments should promote a broader concept of "mental health" services for children and adolescents with emotional disorders and their families. This concept should include the comprehensive array of treatment services and supports needed to enable these youngsters to reach and maintain their optimal level of functioning within their homes, schools, and communities. Implementation options include:
Strengthen Mental Health Services to Children Within Schools. Recognizing that children receive more services through schools than any other public system, federal, state, and local agencies should more fully recognize and address the mental health needs of youth in the education system. Likewise, these agencies should work collaboratively with families and develop, evaluate, and disseminate effective approaches for providing mental health services and supports to youth in schools. Implementation options include:
Screen High-Risk Populations (Juvenile Justice and Child Welfare Populations) and Link Them with Services. Systematic screening procedures to identify mental health and substance abuse problems and treatment needs should be implemented in specific settings in which youngsters are at high risk for emotional disorders or where there is known to be a high prevalence of these or co-occurring mental health and substance abuse disorders. Screening should be implemented upon entry into, and periodically thereafter in, the juvenile justice and child welfare systems, as well as in other settings and populations with known high risk, such as the Medicaid population. When mental health problems are identified, youth should be linked with appropriate services and supports. Implementation options include:
Strengthen Early Childhood Mental Health Interventions. A national
effort focusing on the mental health needs of young children and their
families should be implemented. Grounded in emerging neuroscience
research highlighting the ability of environmental factors to shape
brain development and subsequent behavior, this effort should include
educating parents, the public, and professionals about the importance
of the first years of a child's life for developing a foundation for
healthy social and emotional development.
Prevent Mental Health Disorders. The federal government should develop and implement a comprehensive approach for enhancing the well being of children and adolescents, based on a bio-psychosocial model, through preventive interventions prior to the onset of mental and behavioral disorders. Implementation options include:
Build an Adequate Workforce. The federal government should work in partnership with state governments, national accrediting organizations, professional disciplines and organizations, licensure entities, family organizations, and universities to ensure an adequate workforce for the delivery of children's mental health services. Implementation options include:
To launch the Commission's discussion, Alternate Commissioner Nakamura explained that science is revealing that a child's brain has a developmental trajectory which can be set off course. When development goes awry, the very structure of the brain itself changes, a change which is hard to correct. Therefore, early intervention is critical; with appropriate care, children are resilient. He suggested that the Subcommittee note that children experience periods of vulnerability, particularly during adolescence when they may have aggressive behaviors. Systems, particularly schools, should be aware of and pay attention to these periods of vulnerability. Commissioner Pasternack clarified that the Subcommittee's data on special education costs did not reflect the total amount the country spends on educating children with emotional disorders. While data on children with emotional disorders cannot be separated out, estimates are that almost $80 billion is spent on special education. He also noted the difference in nomenclature between IDEA and the Subcommittee's report. IDEA no longer uses the term serious emotional disturbance (SED) for children. Commissioner Pasternack urged that the Commission's reports use consistent language so that the public is not confused. Commissioner Pasternack also noted the First Lady's commitment to early intervention and childhood cognitive and social development. He suggested that the Subcommittee's policy options around early intervention may have a receptive and powerful advocate in the White House. Finally, Commissioner Pasternack expressed concern about the lack of specificity in the policy options. He suggested that the Commission link general policy options with specific, and in some cases pending, legislative or regulatory proposals. For example, the Subcommittee's call for a better trained work force may move further if linked to a bill on loan forgiveness for math, science, and special education teachers being considered by Congress. Chair Hogan responded that the Commission should be able to (1) create a value-based resource report to guide future mental health system development, (2) identify a comprehensive array of policy options, and (3) advocate for a few timely ideas that the President can and will implement, particularly for programs which may be considered for reform. Commissioner Pasternack underscored the importance of helping systems be more accountable for the services they provide. He reported that the education initiative "No Child Left Behind" strongly promotes both fiscal and programmatic accountability. Commissioner Godbole praised the leadership and dedication of the Subcommittee on Children and Families. He expressed concern about access to acute care for children and adolescents. Private hospitals are exiting the acute care business due to low reimbursement rates and high risk, which exacerbates access problems. In particular, accessing acute care in urban settings is a huge challenge and too often results in youth being incarcerated instead of receiving care. Commissioner Knight-Richardson reiterated the importance of an accessible acute care system. Oregon's acute care system has lost 75 percent of its capacity over the last 18 months, with only two children's programs remaining. Chair Hogan indicated that the Commission has heard repeated concerns about decreasing inpatient capacity. He reported that staff members are gathering information and data related to this concern. He asked that when the Commission addresses acute care at a future meeting, the report should address acute care for children and adolescents. Commissioners who are interested in this topic should contact Deputy Executive Director Stan Eichenauer. Commissioner Speck reported that the status of acute care in 15 states is below tolerable levels. In Texas, the mental health system has to send people out-of-state to obtain inpatient care. Alternate Commissioner Hutchings added that the President's 2004 budget includes an additional $10 million for children's system of care. She questioned whether the Subcommittee discussed children with autism and their place within the mental health system. Commissioner Mayberg responded that the Subcommittee steered away from discussing specific diagnoses and considered functional definitions. He also added that in California, the Department of Mental Health is not responsible for people with autism; however, they are eligible for a larger array of services through the developmental disability system. Commissioner Lerner-Wren commented that primary health care settings usually offer the first and best opportunity for intervention. While observing that the Subcommittee touched upon the interface between physical and mental health care in its policy options, she requested that the policy options highlight this important interface. She questioned whether the Subcommittee considered a public education campaign to raise awareness about children's mental health issues among parents, teachers, and school personnel. Commissioner Huang reported that the Subcommittee's full report will have policy options addressing the interface of primary health and mental health and include a proposal for a public health awareness campaign. Commissioner Lerner-Wren spoke about shrinking state budgets and the decimating impact on juvenile justice systems. She expressed grave concern for youth in the the juvenile justice system who were becoming "throw away kids." Commissioner Fisher clarified some of the different issues for younger children as compared to adolescents. In particular, adolescents who are aging out of the youth system into the adult system face many challenges. He requested that the Subcommittee mention the need to encourage youth participation and a strong youth voice within its policy options. In addition, he requested that the Subcommittee specifically mention peer support for youth. Finally, he discussed the need for other psychoeducation approaches in addition to pharmacology for children with emotional or mental disorders (e.g., ADHD). Commissioner Yates remarked that the Subcommittee on Children and Families faced a tremendous challenge in trying to address the myriad of issues affecting children and families. The Subcommittee hoped that the Commission's other Subcommittees would raise cross-cutting issues (e.g., interface with physical health, evidence-based practices) because it could not focus on those topics. The Subcommittee also wrestled with several specific recommendations (e.g., requirement that children receive a developmental check-up), some of which ultimately were not included in the report. Commissioner Harbin worried that, as the Commission strives for comprehensiveness, important elements might be lost or overlooked. He asked whether the Subcommittee believed there were identified service models with sufficient evidence that should be implemented more fully if financing mechanisms could be changed. If so, the Subcommittee should include those specifics in its policy options. Chair Hogan commented that Commissioner Harbin's question to the Subcommittee is also a question for the full Commission as it considers the final report. He proposed that the Commission defer that discussion and engage in a broader conversation related to the final set of recommendations. Commissioner Postlethwait asked whether the Subcommittee considered proposing a broader screening process instead of screening limited to at-risk populations. Commissioner Huang recounted that the Subcommittee had extensive discussions about screening proposals and focused on the benefits of identification through large-scale screening versus the negative effects of potential labeling. A fundamental hurdle was the lack of services for children who have positive screens. While the Subcommittee could not agree to screening in schools, it did agree to screening during a child's early years in conjunction with physical check ups and in high risk settings (e.g., child welfare and juvenile justice systems). Commissioner Adams elaborated that part of the problem with screening is that it implies a promise of services. She also expressed appreciation for the comments by Commissioner Pasternack about linking definitions given many different labels are used throughout the system. She underscored the importance of linking services and language so they make sense for the people who use the services. Commissioner Adams also gave her perspective on the state of acute care for children in Kansas. She maintained that the juvenile justice system ends up serving as the de facto acute care system. In her opinion, the juvenile justice system should not focus on screening; it should focus on supplying real mental health services. Another response to children who need intensive services, she continued, was to place these children in foster care and send them out-of-state. She urged the Commission to demand that before children are placed in foster care and forced to leave home, children and families receive mental health services. Commissioner Adams stated that children should not just live in their communities, but in and with their families. The belief that a child's disorder is the parents' fault still exists. If parents tell the truth about the level of distress in their families, they are blamed and risk losing their children. The Commission needs to help educate schools and providers about these disorders so that parents can feel free to come forward and request help. Commissioner Godbole moved that the report offered by the Subcommittee on Children and Families along with discussion be accepted. Commissioner Lerner-Wren seconded the motion. The full Commission voted unanimously to accept the report. Commissioner Pasternack questioned how the Subcommittee would proceed and provide more specificity around its policy options. Commissioner Huang responded that the Subcommittee would have more specificity in its final report to the Commission, including specific options that link up to actual education and juvenile justice legislative proposals. The Subcommittee had not addressed acute care sufficiently in its work and may choose to add that discussion. A copy of the policy options provided by the Subcommittee on Children and Families is available on the web site, www.MentalHealthCommission.gov. Report of the Subcommittee on MedicaidCommissioner Mayberg, chair of the Subcommittee on Medicaid, introduced Steve Day, Subcommittee consultant, who worked with consultant Pam Hyde to help the Subcommittee draft the policy options. Chair Hogan also welcomed Dennis Smith, Director of the Center for Medicaid and State Operations, Center for Medicare and Medicaid Services (CMS) who is replacing Ruben King-Shaw of CMS on the Commission. Commissioner Smith suggested that the Commission's work dovetails nicely with the President's recently introduced package of CMS reform initiatives. The initiatives are aimed at helping states facing tight budgets by increasing federal funds when states are unable to come up with their share of the Medicaid match. He referenced the dramatic financial pressures on states, with Medicaid constituting at least 20 percent of most state budgets and some states considering early release programs in their correction systems in order to save money. The Medicaid reform package is modeled after the State Children's
Health Insurance Program (SCHIP) program created in 1997 to give greater
flexibility to states. While some federal requirements exist, the
program would allow states to better streamline financing instead
of drawing from several pots of money. The CMS Independence Plus Waiver
also fosters flexibility by allowing consumers and families more control
over their services. Commissioner Smith noted that the proposal encourages
examination of the health care system to determine if the system includes
prevention, particularly prevention services for children with disabilities.
The Alternate Commissioner Stanton elaborated that the role of CMS is to create incentives for states, as opposed to telling states what they must do. The Commission may want to consider recommendations geared toward states, encouraging them to take advantage of opportunities for flexibility. Chair Hogan agreed that the Commission's audience includes states, as well as the federal government. Commissioner Mayberg commented that the pursuit of Medicaid dollars often shapes the delivery system. Thus, a system offers what is paid for rather than what is considered best treatment. If it becomes addicted to Medicaid, the system will limit its ability to be creative and move forward. In addition, while many people with mental illness are covered by Medicaid, many still are uninsured or underinsured. In his report to the full Commission, Commissioner Mayberg outlined the key issues in Medicaid funding of mental health services:
The policy options presented in this report are intended to address and correct these issues in the Medicaid program in a variety of ways. It should be noted that although most of the options focus on federal initiatives, the actual implementation of many of the options depends on State actions. The options are intended to stimulate federal leadership and guidance, and ultimately result in substantial policy and financing changes. At the same time, these policy options are designed to provide the States with both the tools and the incentives to use Medicaid to maximum advantage in providing mental health services to youth and adults. The Medicaid policy options focused on four major policy goals:
Within each of these policy areas there are more specific options
for implementation in three categories of action:
The Subcommittee presented broad policy options within each policy goal area. Improve Access
Enhance Service Delivery
Enhance Service Planning and Coordination
Increase Consumer Responsiveness and Continually Improve Quality
Commissioner Insel talked about the gap between evidence-based practices and what is paid for by Medicaid. He asked whether there is a scientific evidence base to advise Medicaid about which services it should support. Commissioner Mayberg responded that there is agreement that evidence exists for certain models. SAMHSA has developed and promoted six tool kits (e.g., supported employment, ACT, family education, medication algorithms) to promote wider use of evidence-based practices in mental health. However, there is a pressing gap between what is well known and what is financed. Commissioner Harbin requested that the final policy options address more specifically the gap between evidence-based models and financing. While he found the time frames proposed by the Subcommittee helpful, Commissioner Harbin maintained that the Commission cannot move the field forward with general recommendations. Chair Hogan commented that the point made by Commissioner Harbin should be considered by the full Commission, not just the Subcommittee on Medicaid. Alternate Commissioner Stanton added that the Subcommittee discussed that CMS could provide immediate guidance about how the six evidence-based practices can be financed under current Medicaid regulations. An intermediate step would be for CMS to introduce the collaborative care step model into the National Coverage Determination Process. Chair Hogan observed that an emerging alignment between SAMHSA and
payers like CMS would have a huge benefit for the field. Commissioner Godbole commented that there is no single way to align providers and coordinate care; yet all providers are being paid by Medicaid. Without mechanisms to promote evidence-based practices or accountability, the financing system reinforces substandard and fragmented care. Chair Hogan suggested that mechanisms currently exist but states do not take advantage of them. Commissioner Fisher stated that Medicaid has an important role in ensuring consumers and families are involved in the treatment planning process by strengthening its accountability requirements. He also noted that tension still exists between the scope of Medicaid coverage and evidence for peer support and consumer-run activities. Commissioner Fisher requested that CMS consider evidence being developed by consumers as it determines coverage. Alternate Commissioner Stanton mentioned that the Independence Plus Initiative requires states to use person-centered planning. Proposed CMS reforms should promote even more choice without going through a waiver process. Commissioner Speck moved to accept the report offered by the Subcommittee on Medicaid, which Commissioner Adams seconded. The full Commission voted unanimously to accept the Subcommittee's report. A copy of the policy options outlined by the Subcommittee on Medicaid is on the web site, www.MentalHealthCommission.gov. Work SessionUpdate from Subcommittee on Consumer Issues Commissioner Fisher and consultant Jean Campbell, Ph.D. provided an overview of the discussions by the Subcommittee on Consumer Issues. The Subcommittee's focus has been on the principles of recovery for consumers. These recovery principles include: (1) fostering self-determination and allowing people control over their own lives, (2) establishing empowering relationships where professionals, family, and friends express hope and belief in the consumer, and (3) helping consumers find a meaningful role in society. Commissioner Fisher suggested that the Commission's charge encompasses these recovery principles. Commissioner Fisher also noted that the mental health system traditionally has not embraced self-determination and recovery. Yet, over the last five years, the culture has begun to shift toward a growing acceptance of the recovery approach. At the collective level, people who have been mentally ill are now involved in local, state, and federal advisory boards. Consumers also are involved with training, including training people who do not have mental illnesses. Consumers in Georgia have utilized the Medicaid's rehabilitation option to finance peer support efforts in that state. Several consumers have developed training models to train other consumers on the recovery approach. Finally, consumers are involved with research and development of evidence-based practices. Commissioner Fisher observed that consumers' own experiences are another legitimate source of evidence. Commissioner Fisher stated that recovery at the individual level may be moved forward by lessons learned from other disability groups. For example, the RWJ Foundation supported an initiative for people with developmental disabilities by giving them vouchers to allow more flexible and creative use of funding. Dr. Campbell spoke about her work drafting an issue paper for the Subcommittee and the significant input from consumers, ranging from those who have contacted the Commission to consumer/survivor groups who have offered policy options. Dr. Campbell noted that, without consumers at the table, mental health decision-makers only have partial knowledge. For the Subcommittee, Dr. Campbell has gathered information on effective
strategies that foster consumer participation and inclusion. She also
highlighted promising community-based peer support programs, some
of which are at-risk given looming state budget cuts. Dr. Campbell
spoke about the emerging evidence base for Following the overview, Commissioners exchanged ideas and questions to further the discussion about recovery and consumer issues. Chair Hogan commented that there are still many mental models about recovery. Some people think about recovery as a state, like remission. Others view recovery as a process of moving beyond illness or disability. In Ohio, the discussion also includes thinking about how recovery applies to children. Since children undergo so much development change, resilience, rather than recovery, may be a more appropriate concept for children. Commissioner Godbole inquired about Commissioner Fisher's use of the term "psychiatric label" in his remarks. He questioned whether Commissioner Fisher was implying that mental illness was just a label and not a real illness. Commissioner Fisher responded that the Subcommittee has avoided a discussion of causality. The common elements among people who have recovered are the three principles of recovery he mentioned. Most agree that there are biological, psychological, and social components to the etiology of mental illness. The Subcommittee chose to emphasize those aspects that bring hope and the promise of recovery to consumers. Commissioner Yates commented that, in her experience as a practitioner, some people who have been told they have brain disorders may simply rely on medication and not engage in other services or supports. Commissioner Godbole observed that other Subcommittees similarly moved away from narrow definitions, preferring to adopt a biopsychosocial understanding of mental illness and the goal of recovery. Alternate Commissioner Nakamura underscored that mental illnesses are real diseases mediated by a real organ, the brain. As the field learns more how environments and behaviors interact to change the brain's structure, there are additional ways for addressing mental illness, including behavioral interventions. He commented that the discussion should not be "nature versus nurture" as they are really two sides of the same coin. More importantly, nature and nurture should be viewed in partnership, as occurs with physical diseases. For example, people who have heart disease are given medication and told to change their lifestyles. As the mental health field has the added problem of stigma, people are not comfortable talking about their illnesses. Thus, it is important to emphasize that people do recover and, in the process, help reduce the stigma. Commissioner Harbin expressed support for the general principles of access to treatment, hope, and more consumer voice in the treatment process. He expressed concern about the mechanisms to achieve those principles. He cautioned that attempts to fix the system not make it worse through unintended consequences. Wondering whether the scientific medical model would be overlooked or minimized if the Commission emphasized recovery, Commissioner Harbin urged balanced in the Commission's approach. Commissioner Fisher agreed that it was important to have complementary approaches. In his opinion, having more consumers involved will further the knowledge base and advance the clinical process. Commissioner Huang observed that people are not concerned about the formation of diabetes groups; yet, due to strong stigma, such concern does exist for consumer groups. Anti-stigma efforts should not just focus on public awareness, but also target all stakeholders, including providers and administrators. Commissioner Huang asked Dr. Campbell whether the multi-site study is examining peer support among families and youth. Dr. Campbell indicated that study focuses on drop in centers, education and advocacy, and mutual peer support groups, parameters outlined by Center for Mental Health Services (CMHS). Chair Hogan commented that the general public supports the notion of self help, yet the mental health field does not align itself with that concept. Commissioner Lerner-Wren added that when individuals have a humanizing experience within courts, individuals experience increased hope and expectations. Dr. Campbell noted that consumer satisfaction findings reflect the literature in the general health field: affiliate relationships that encompass listening and feelings of acceptance produce the best health outcomes. These kinds of relationships lead to recovery.
Commissioner Postlethwait expressed concern about the term recovery. He asked whether using the term recovery will suggest to the public that the illness is past tense and not an ongoing illness. There may be misperceptions if people conceive of recovery similar to the model of recovery for physical illness. Commissioner Adams echoed Commissioner Postlethwait's concerns. Perhaps the correct word is "recovering" or "resilience" She indicated more interest in information-sharing among peers to obtain appropriate services rather than using peer-to-peer services. Commissioner Fisher stated that the discussion over "recovery" and "recovering" is an ongoing debate. It is not known how quickly people recover. It is known that following recovery principles facilitates improvement and maximizes a person's recovery. Thus, recovery principles should inform policy decisions and training efforts so that people will progress further in their recovery. Alternate Commissioner Nakamura observed that recovery is a complex concept. The Commission may need to elaborate on its use of the term and clarify what is meant. While recovery does offer hope that people can improve their lives, it does not mean that everyone will be symptom-free for the rest of their lives. Commissioner Godbole reiterated the concern expressed by Commissioner Postlethwait and requested that the final report elaborate upon the concept of recovery so the Commission is clear in its use of the term. Chair Hogan thanked Commissioner Fisher for leading the conversation about consumer issues and requested that Commissioners contact Commissioner Fisher if they had policy options to recommend. Public CommentAs during each Commission meeting, members of the public had the opportunity to address the full Commission. Several presenters discussed tensions in the acute care system, prevalence of trauma in mental health system, workforce concerns, and the Commission's previous rights and engagement discussion. Individuals who provided brief oral remarks and written statements included: Margaret Bailey, Ph.D., Immediate Past-Chair, American Hospital Chair Hogan closed the day's meeting at 4:15 p.m. February 6, 2003Work SessionChair Hogan opened the final day of the Commission meeting at 8:45 a.m. Report of the Subcommittee on Cultural Competence Commissioner Knight-Richardson, chair of the Subcommittee on Cultural Competence, provided the Subcommittee's report. He stated that the Subcommittee recognizes that racial and ethnic populations in the U.S. have historically been underserved or inappropriately served by the behavioral health system. Behavioral health services have neglected to incorporate respect for and understanding of the histories, traditions, beliefs, language, and value systems of culturally diverse groups. Misunderstanding and misinterpretation of behaviors often have led to tragic consequences and inappropriate referrals to criminal and juvenile justice systems. While bold efforts have been made to improve services for culturally diverse populations, significant barriers still remain in access, quality and outcomes of care. As a result, Native Americans, African Americans, Asian/Pacific Islanders and Latinos bear a disproportionately high burden of disability from behavioral health disorders. Cultural competence in behavioral health is a commonly used concept referring to an innovative approach to the delivery of behavioral health services for minority populations. Its general objectives are to provide quality services for culturally diverse populations, including culturally appropriate prevention, outreach, location of services, engagement, assessment, and intervention. However, despite widespread use of the concept and commonly used definitions, there is a lack of research on its operationalization and effectiveness. While critical indicators and standards for culturally competent care have been generated through expert consensus, these remain to be systematically applied, measured, and linked to effectiveness of services. Cultural competence is considered by many in the behavioral health field to be essential for ensuring quality of care, responsiveness of the service system, and renewed hope for recovery among communities of color. This conviction could be proved with a sound evidence base. Meanwhile, behavioral health systems can take steps to respond to the concerns of ethnic and racial populations by building trust, increasing cultural awareness, and responding to cultural and linguistic differences. The policy options listed below are some examples of the subcommittee's priorities. In its final report, the Subcommittee will lay out a comprehensive menu of policy options for further consideration.
Urge DHHS to continue to develop and expand a comprehensive research
program for minority behavioral health, especially in the areas of
epidemiology, evidence-based treatment, psychopharmacology, ethnic-
and culture-specific therapeutic interventions, diagnosis and assessment,
and prevention of mental illness and promotion of mental health.
Commissioner Lerner-Wren suggested that discussions about cultural competence also address the issue of trauma. She noted public speakers from earlier in the day discussed mental health services and supports to women of color, many of whom had histories of trauma. Chair Hogan agreed that Maxine Harris, Executive Director of Community Connections in Washington, D.C., described the evolution of their understanding of cultural competence and significance of trauma. Trauma needs to be considered by many of the Commission's subcommittees. Commissioner Murphy elaborated that the challenge is to weave cultural competence issues throughout the Commission's report because it affects all domains. Alternate Commissioner Hutchings questioned whether the Subcommittee addressed the growing literature aimed at guiding systems to become more culturally competent. Commissioner Knight Richardson responded that the Subcommittee had discussed methods for measuring competence, observing that cultural competence is not synonymous with effective treatment. What is known is that treatment compliance is greatly increased by cultural sensitivity by the mental health work force. However, the field does not yet have empirically-supported training to teach cultural competence to the work force. Commissioner Speck stated that rural areas have cultural variance and thus there is also a need for cultural sensitivity when working in rural areas. Commissioner Huang commented upon the lack of a strong science base for the term "culturally competent services." However, while waiting for the science to advance, guidance, standards, and other accountability mechanisms should be expanded and monitored for these populations, such as the standards developed by CMHS-sponsored expert consensus panels. Commissioner Huang also noted that people who are minority racial and ethnic groups experience multiple stigmas due to their minority status, poverty, and mental health disorders. Children of color with mental disorders are going into juvenile justice and child welfare systems (de facto mental health system) and are not receiving services. Alternate Commissioner Stanton appreciated the Subcommittee's inclusion of faith-based and nontraditional systems of support in the discussion of cultural competence, particularly as those supports have not been addressed much by other Subcommittees. He also posited that how recovery is perceived and defined is affected by culture. He questioned whether the Subcommittee discussed the needs of Native American populations, as they operate with separate funding streams and different requirements through the Indian Health Service (IHS). Commissioner Knight-Richardson responded that the Subcommittee did not explore the details of financing. He noted that consultant Ethleen Iron Cloud-Two Dogs had suggested that Native Americans preferred to learn about effective models and then implement what they think works with IHS funding. Chair Hogan commented that multiple funding streams contribute greatly to fragmentation. During the Carter Commission, mental health care was provided by state hospitals, community mental health centers, and private practitioners. Today, the Commission is aware of 35 different federal programs that impact people with mental illness. The public mental health system is no longer controlled by the state mental health agency. Medicaid and Medicare are significant payers of the public mental health services. The multiplicity of funding streams is a key issue that needs to be included in the Commission's final report. Alternate Commissioner Hutchings requested that the Subcommittee include more emphatic statements regarding: (1) the shared responsibility across the federal, state, and local levels to promote cultural competency; (2) the need for sustained leadership for cultural competence to advance; and (3) the opportunity to widen the scope of cultural competence to include people who are deaf and hard of hearing, people who are gay and lesbian, and other minority groups not served well by the mental health system. Commissioner Knight-Richardson acknowledged the concern to extend the scope to many cultural groups. However, the Subcommittee believed it was asked to focus on the four minority groups addressed in the Surgeon General's report. Alternate Commissioner Hutchings respectfully reiterated her request that the Subcommittee revisit its current exclusive focus on the four racial groups. Commissioner Fisher reiterated the request of Alternate Commissioner Hutchings to expand the scope, particularly to include people who are gay, lesbian, bisexual and transgendered. He also agreed with that a broader definition of recovery - gaining a meaningful role in society - would embrace different cultural interpretations and address the point made by Alternate Commissioner Stanton. Finally, Commissioner Fisher urged continuation of SAMHSA support of developing consumer leadership among members of different minority groups. Commissioner Godbole also expressed his support for expanding the scope of the Subcommittee's discussion, indicating the Commission represented an important opportunity to bring attention to the needs of multiple cultural groups. He asked whether the Subcommittee discussed the issue of screening individuals for mental illnesses and the cultural implications of screening. Commissioner Knight-Richardson indicated the group discussed the cultural implications of questions on screening instruments and the frequency of false positives as a result of screening. The Subcommittee will discuss the issue of screening in more detail in its final report to the Commission. Referencing policy option #4, Commissioner Yates spoke about the challenges of recruiting personnel of color, even in Texas where there are larger numbers of individuals belonging to minority cultural and racial groups. She suggested that recruiting and attracting individuals to the mental health field should begin at earlier ages. Commissioner Knight Richardson observed that the difficulty with recruiting may not be due to lack of interest, but due to barriers, particularly financial barriers. Today, few university programs promote access for minority individuals interested in mental health. Alternate Commissioner Fenton expressed appreciation to the Subcommittee for identifying further research needs. He suggested that, cultural competence ultimately is a way of reducing disparities in access, quality, and outcomes. He indicated that it may be helpful to state explicitly that science has identified a core set of treatments (e.g., psychopharmacology, psychotherapy) that is efficacious if treatment is delivered in a culturally competent manner. He also referenced the mistrust of the mental health system that can exist within some minority communities. Commissioner Knight-Richardson indicated that the Subcommittee's report would include some discussion about efficacy. He also commented that anti-stigma approaches need to be stronger in certain cultural communities, where illness may be perceived as result of sin rather than physiological illness. Service delivery must foster affinity and trust in order for treatment to be effective. Commissioner Arredondo remarked that linguistic competency is an important part of cultural competency. For example, within Texas, one local mental health authority contracts with translators in 67 different languages. With funding from CMHS, the Texas Department of Mental Health and Mental Retardation partnered with California Department of Mental Health to begin a program to train people to serve as interpreters in mental health settings. Commissioner Arredondo suggested that the Subcommittee may want to consider such a training policy option. Commissioner Mayberg stated the Commission must incorporate cultural competence throughout its recommendations or run the risk of promoting culturally competent programs that are separate entities that contribute to fragmentation. Cultural competence needs to be viewed as a system value. Chair Hogan agreed that cultural competence is an emerging theme that is intertwined with the issue of quality of care. Commissioner Huang stated that cultural competence is synonymous with quality of care. Chair Hogan observed that the Commission may have a more significant impact by offering a strong and affirmative statement of principles than promoting program recommendations. Commissioner Adams commented that while she is interested in the future of the mental health system, she is concerned about the current state of services in her state. She wished that the Commission could share its model of respectful dialogue among its members with their respective states, where such dialogue often breaks down. Commissioner Fisher responded that engaging people grows out of educating people about differences. He cited the U.S. Army's program of pairing recruits of different ethnicities to foster understanding of differences. He suggested that the Commission promote education programs that encourage acceptance of diversity. Chair Hogan said that the Commission's final report will address both the President and the mental health field. While he was unsure about the wording, he indicated that Commissioner Adam's concern should be reflected in the Commission's report. Commissioner Huang stated that the Commission was modeling the "contact hypothesis" explained by Patrick Corrigan in a previous presentation on stigma. As Commissioners have had more contact with each other, they have found it easier to understand, respect, and ultimately talk about each other's respective positions. The concept of fostering contact may be a guiding principle for the Commission, as well. Commissioner Speck made a motion to accept the Subcommittee's report and the ensuing discussion, which Commissioner Arredondo seconded. The full Commission voted unanimously to accept the report. A copy of the policy options outlined by the Subcommittee on Cultural Competence is available on the web site, www.MentalHealthCommission.gov. Report of the Subcommittee on Evidence-based Practices/Medication IssuesCommissioner Harbin provided the report for the Subcommittee on Evidence-based Practices with a focus on medication issues. He explained that there have been nine new antidepressant agents approved since 1988, in the Selective Serotonin Reuptake Inhibitors (SSRI), Serotonin Norepinephrine Reuptake Inhibitors (SNRI) and multiple pathway categories, and five new anti-psychotic drugs known as "atypical anti-psychotic agents." The new agents for treating anxiety, depression and schizophrenia offer greater user friendliness for consumers and physicians alike. They have also provided efficacy advances in the treatment of anxiety disorder and refractory schizophrenia. Just as impressive as scientific advances have been the unprecedented increases in spending on prescription drugs in general and psychotropic medications specifically. Multiple years of cost increases in excess of 16% per annum for prescription drugs have put on the front page of newspapers what was once an ignored component of health care. Leading the way in expenditure increases have been psychotropic drugs. These trends have been driven by scientific advances, the expansion of insurance coverage, growth of managed care, and a greater willingness of physicians to make pharmacotherapies a central component of treatment for mental disorders. Policy makers have focused their concerns about psychotropic medications on access, cost, and quality. Access is a concern for several reasons. First, some insurance plans do not cover medications; others only cover some of the psychoactive medications or restrict access by other mechanisms. Second, future generations of individuals with mental disorders may not have access to much-needed, newer, and superior agents if research and development (R&D) do not continue. Finally, some population sub-groups have problems with access and quality because little is known about the effects of some medications on them. This is particularly true for children and adolescents, who have experienced dramatic increases in the use of psychotropic medications. In sum, policy makers want to control costs without creating disincentives for quality care or research and development. The Sub-Committee on Evidence-Based Practices recommends the following four policy options for consideration:
Commissioner Yates stressed the importance of the final policy option recommending research on medication use with special populations, particularly children. She was concerned about the scant effectiveness data on children given the dramatic use of medication, including use of medications off-label, with children. Commissioner Harbin indicated that data from the last 10 years demonstrates the accelerated growth of psychotropic medication expenditures, perhaps making medication the fastest growing component of physical and mental health care. The annual growth rate of spending on antipsychotic medications increased 33% from 1997-2001, while the growth rate of spending on antidepressants was 24% during the same period. During the last fifty years, there has been a 50% drop in consumer out-of-pocket spending on psychotropic medications, largely due to better insurance coverage of the medication. Stating that pharmacological treatment should be part of a package of services, Commissioner Harbin pointed out that increased spending on psychotropic medication represented one area of parity within the current health care system. Commissioner Insel reminded the overall Commission that the medication world changes rapidly; a different landscape will exist in five years. In its final report, the Commission should recognize the great contribution of medications, but inform readers about the important research still to be done. Research must continue on the risks of long-term treatment and risks involved with current compounds for special populations (e.g., children). Revolutions in pharmacology eventually will alter the way treatment occurs. Alternate Commissioner Hutchings observed that psychotropic prescriptions are generally written by primary care providers. One should be careful about drawing conclusions about parity given the continued lack of access to specialty mental health care providers. Commissioner Harbin acknowledged the point; his point is that the cost of psychotropic medication is covered in the same manner as medication prescribed for physical health reasons. Spending on psychotropic medication has accelerated in contrast with the decreased levels of spending for other mental health services. While Medicaid covers psychotropic medications, Chair Hogan remarked that the public mental health systems also serve people who have no insurance; these individuals have little to no access to medications. Alternate Commissioner Stanton commented that reform may address some of these issues, particularly Medicare reform. He suggested that the Commission may want to formulate principles about prescription drug coverage that can be included in that upcoming debate. Referencing the Subcommittee's first policy option, he stated that CMS is attempting to give states greater flexibility through initiatives such as the Pharmacy Plus waiver, 1115 demonstrations, and preferred drug lists. CMS is sensitive to the balance of maintaining access to medications through cost effective strategies. Alternate Commissioner Stanton questioned whether the third policy option was proposing that managed care organizations assume the risk for the pharmacy benefit. Commissioner Harbin clarified that it was not the intent of the third
policy option to assign risk to the pharmacy benefit managers; risk
would continue to reside with the managed care company and/or employer.
The option was aimed at promoting better coordination between the
pharmacy benefit manager, managed care organization, Chair Hogan expressed concern about structuring formularies that place non-generic SSRI's in a preferred status without recognizing that different medications are effective for different people. Commissioner Godbole commented that Medicaid state budgets are so tight that psychotropic medications are under extreme scrutiny. He expressed concern that cost-saving decisions would not take into account the lengthy process necessary for the development of new drugs. Commissioner Fisher reported that the Medicaid authority in Massachusetts asked all physicians to review cases of any people on more than one major tranquilizer to address the concerns about polypharmacy. At his clinic, there is a pilot project underway to help consumers reduce their use of multiple medications. Commissioner Fisher commented that peer and social support, psychosocial interventions, and family support are good ways to reduce high use of medications. He expressed concern about the dramatic rise in psychotropic medication while the use and availability of other supports has decreased. The increase in polypharmacy may be due to fragmentation, which would suggest the need for better coordination of care and discharge planning. For example, Massachusetts managed care contracts require coordination between outpatient and inpatient care. Commissioner Harbin underscored that some of the Subcommittee's policy options called for better coordination, clinical overview, and monitoring tools. Commissioner Insel suggested that the real potential for science to impact treatment will occur when pharmacological treatment can be more targeted and, therefore, more efficient. He also remarked that, when the new generation of SSRI's come off patent, there potentially will be significant cost savings as generic medications become available. Given the interface between psychotropic drugs and evidence-based practices, Alternate Commissioner Hutchings suggested that the Commission help provide a framework and tools for field, such as dissemination of the Texas treatment algorithms. Chair Hogan echoed the importance of shortening the gap between what is known and what is practiced. Commissioner Huang shared Commissioner Fisher's concern that use of medications may be displacing other psychosocial interventions. She emphasized the importance of targeted dissemination of evidence-based practices, perhaps according to specific populations or age groups. Commissioner Postlethwait expressed concern about prescribing psychotropics in addition to medications for other chronic conditions, particularly with older populations. He also addressed the risks faced by the pharmaceutical industry when products patents expire and medicine can be sold generically. There must be a balance between achieving cost savings through generics and helping pharmaceutical companies maintain their investment in research so that new and improved products come to the market. Finally, Commissioner Postlethwait discussed the science to practice cycle and the role of the pharmacy industry in educating physicians, consumers, payers about available medication choices. Commissioner Lerner Wren stressed the important interplay between medication and social and rehabilitative supports. Commissioner Speck spoke about the impact of increased use of psychotropic medication on work force satisfaction. When prescribing and monitoring psychotropic medications are their only interaction with clients, psychiatrists experience a definite decrease in satisfaction. Commissioner Mele-McCarthy expressed concern about medications used to treat children with ADHD and the limited education provided to parents by pediatricians. The Subcommittee should discuss the need for primary care physicians to be well-versed in the full range of treatment options so that families really understand choices and side effects. Alternate Commissioner Stanton suggested that the eventual report produced by this subgroup of the Subcommittee on Evidence-based Practices should address strategies for making decisions about psychotropic medications (e.g., use of the Texas algorithms). He also questioned whether the reference to 77 percent of visits being for medication referrals took place in primary care or specialty mental health settings. Commissioner Harbin responded that the data was for primary care visits; data on the specialty mental health care providers was not available. Commissioner Insel requested that a reference for this statistic be included in the Subcommittee's report. Commissioner Harbin reiterated that the purpose of the particular Subcommittee was to focus on medication, not on other important services and supports. Commissioner Fisher commented that, given the complexity of available psychotropic medications, consumers and physicians need independent education resources, in addition to pharmaceutical companies. Systematic education strategies might include continuing medical education (CME) incentives and educational forums sponsored by NIMH or the FDA. Alternate Commissioner Hutchings moved to accept the report prepared by the Subcommittee on Evidence-based Practices/Medication Issues' and the subsequent discussion. Commissioner Speck seconded the motion. The full Commission voted unanimously to accept the Subcommittee's report. A copy of the policy options outlined by the Subcommittee on Evidence-based Practices/Medications is on the web site, www.MentalHealthCommission.gov. Approval of January Meeting MinutesChair Hogan requested that Commissioners approve the draft minutes from the January 7-9, 2003 meeting. Commissioner Speck moved to accept the minutes and Commissioner Arredondo seconded her motion. The minutes were adopted by a unanimous vote. Adjournment and Next Meeting Announcement Chair Hogan adjourned the meeting at 12:10 p.m. The next Commission meeting will occur March 4-6, 2003 in Arlington, Virginia. I hereby certify that, to the best of my knowledge, the foregoing minutes are accurate and complete. Claire Heffernan Michael Hogan, Ph.D. These minutes were considered and approved by the Commission at its March 5, 2003 meeting and any corrections or annotations incorporated into the text. Last Modified 3/7/03
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