TRANSFORMING MENTAL HEALTH CARE IN AMERICA
The Federal Action Agenda: First Steps
Executive Summary
The work of the New Freedom Commission on Mental Health is a key component of President George W. Bush's New Freedom Initiative. In its final report to the President, the Commission called for nothing short of fundamental transformation of the mental health care delivery system in the United States-from one dictated by outmoded bureaucratic and financial incentives to one driven by consumer and family needs that focuses on building resilience and facilitating recovery. The following Federal Mental Health Action Agenda articulates specifi c, actionable objectives for the initiation of a long-term strategy designed to move the Nation's public and private mental health service delivery systems toward the day when all adults with serious mental illnesses and all children with serious emotional disturbances will live, work, learn, and participate fully in their communities. A keystone of the transformation process will be the protection and respect of the rights of adults with serious mental illnesses, children with serious emotional disturbances, and their parents. With respect to children and adolescents, the New Freedom Commission on Mental Health and this Federal Mental Health Action Agenda clearly recognize that parents are the decision-makers in the care for their children. Therefore, in this document, whenever the words child or children are used, it is understood that parents or guardians are the decision-makers in the process of making choices and decisions for minor children.
Background
New Freedom Commission on Mental Health
Launched by President Bush in February 2001, the New Freedom Initiative is designed to promote full access to community life for people with disabilities, including access to employment and educational opportunities and to assistive and universally designed technologies. The New Freedom Initiative builds on the 1990 Americans with Disabilities Act (ADA), the landmark legislation providing protections against discrimination, and on the U.S. Supreme Court's 1999 Olmstead v. L.C. decision, which affirmed the right of individuals to live in community settings. In June 2001, President Bush issued Executive Order 13217 promoting community-based alternatives for all individuals with disabilities and directing key Federal agencies to work closely with States to ensure full compliance with the Olmstead decision and the ADA. Through comprehensive self-evaluations and extensive public input, a number of Federal agencies identified barriers to community integration in their policies, programs, regulations, and statutes, and developed priorities and action steps to address these barriers.[1] In April 2002, the President signed Executive Order 13263 [see Appendix A] establishing the New Freedom Commission on Mental Health and charged the group with conducting a comprehensive study of the problems and gaps in the mental health service system and to make concrete recommendations for immediate improvements that the Federal government, State governments, local agencies, as well as public and private health care providers, can implement. The Commission members met for 1 year to study the research literature and to receive comments from more than 2,300 mental health consumers, family members, providers, administrators, researchers, government officials, and other key stakeholders. The Commission framed its work around the five principles set forth in the Executive Order that established its responsibilities. These principles seek to improve the outcomes of mental health care; promote collaborative, community-level models of care; maximize existing resources and reduce regulatory barriers; use mental health research findings to influence service delivery; and promote innovation, flexibility, and accountability at the Federal, State, and local levels. In particular, the President directed the Commission to:
- Focus on the desired outcomes of mental health care, which are to attain each individual's maximum level of employment, self-care, interpersonal relationships, and community participation.
- Focus on community-level models of care that effectively coordinate the multiple health and human service providers and public and private payers involved in mental health treatment and delivery of services.
- Focus on those policies that maximize the utility of existing resources by increasing cost-effectiveness and reducing unnecessary and burdensome regulatory barriers.
- Consider how mental health research findings can be used most effectively to infl uence the delivery of services.
- Follow the principles of Federalism, and ensure that its recommendations promote innovation, flexibility, and accountability at all levels of government and respect the constitutional role of the States and Indian tribes.
The Vision of a Transformed Mental Health System
The Commission found that the mental health service delivery system is not oriented to the single most important goal of the people it serves-the goal of recovery. In contrast, the Commissioners envisioned a future "when mental illnesses can be prevented or cured, a future when mental illnesses are detected early, and a future when everyone with a mental illness at any stage of life has access to effective treatment and supports." The Commission articulated a vision of a transformed system as one in which Americans understand that mental health is essential to overall health; mental health care is consumer and family driven; disparities in mental health services are eliminated; appropriate and early mental health screening, assessment, and referral to services occurs; excellent mental health care is delivered and research is accelerated; and technology is used to access mental health care and information.
Challenges to a Recovery-Oriented Mental Health System
Called Achieving the Promise: Transforming Mental Health Care in America, the fi nal report of the New Freedom Commission is ground-breaking in its emphasis on building a system that is evidence based, recovery focused, and consumer and family driven. The report helps Americans understand that mental illnesses and emotional disturbances are treatable and that recovery should be the expectation. In a transformed mental health system, services and treatments must be geared to give consumers and families real and meaningful choices about treatment options and providers, and care must focus on increasing individuals' abilities to cope successfully with life's challenges, on building resilience, and on facilitating recovery. To transform the mental health service delivery system, the Commission challenged the Federal government, State governments, local agencies, and public and private health care providers to:
- Close the 15- to 20-year gap it takes for new research findings to become part of day-today services for people with mental illnesses.
- Harness the power of health information technology to improve the quality of care for people with mental illnesses, to improve access to services, and to promote sound decision-making by consumers, families, providers, administrators, and policy makers.
- Identify better ways to work together at the Federal, State, and local levels to leverage human and economic resources and put them to their best use for children, adults, and older adults living with-or at risk for-mental disorders.
- Expand access to quality mental health care that serves the needs of racial and ethnic minorities and people in rural areas.
- Promote quality employment opportunities for people with mental illnesses.
Reform Is Not Enough
The word "transformation" was chosen carefully by the Commission to reflect its belief that mere reforms to the existing mental health system are insufficient. Transformation is a powerful word with implications for policy, funding, and practice, as well as for attitudes and beliefs. Indeed, transformation is not accomplished through change on the margin but, instead, through profound changes in kind and in degree. Applied to the task at hand, transformation represents a bold vision to change the very form and function of the mental health service delivery system to better meet the needs of the individuals and families it is designed to serve. As with any large-scale organizational change, transformation of the mental health system will be a complex process that proceeds in a non-linear fashion and that requires collaboration, innovation, sustained commitment, and a willingness to learn from mistakes.
A Broad-Based Commitment
To develop this Federal Mental Health Action Agenda, the Substance Abuse and Mental Health Services Administration (SAMHSA), in the U.S. Department of Health and Human Services (HHS), under the direction of SAMHSA Administrator Charles G. Curie, MA, ACSW, invited key Federal agencies to compile inventories of current programs and activities that address the Commission's vision, and to propose action steps to move the agenda forward. In addition to HHS, these agencies include the U.S. Departments of Education (ED), Housing and Urban Development, Justice (DOJ), Labor (DOL), and Veterans' Affairs (VA) and the Social Security Administration (SSA).
Goals of the Federal Collaboration
With this Federal Mental Health Action Agenda, HHS and its Federal partners make an unprecedented commitment to collaborate on behalf of adults with serious mental illnesses and children with serious emotional disturbances to:
- Send the message that mental illnesses and emotional disturbances are treatable and that recovery is possible.
- Act immediately to reduce the number of suicides in the Nation through full implementation of the National Strategy for Suicide Prevention.
- Help States develop the infrastructure necessary to formulate and implement Comprehensive State Mental Health Plans that include the capacity to create individualized plans of care that promote resilience and recovery.
- Develop a plan to promote a mental health workforce better qualified to practice culturally competent mental health care based on evidence-based practices.
- Improve the interface of primary care and mental health services.
- Initiate a national effort focused on the mental health needs of children and promote early intervention for children identifi ed to be at risk for mental disorders. Prevention and early intervention can help forestall or prevent disease and disability.
- Expand the "Science-to-Services" agenda and develop new evidence-based practices toolkits.
- Increase the employment of people with psychiatric disabilities.
- Design and initiate an electronic health record and information system that will help providers and consumers better manage mental health care and that will protect the privacy and confidentiality of consumers' health information.
Federal Leadership, Shared Responsibility
The Federal role in the Federal Mental Health Action Agenda is to act as a leader and a facilitator, promoting shared responsibility for change at the Federal, State, and local levels, as well as in the private sector. States, however, will be the very center of gravity for system transformation. Many have already begun this critical work. Finally, an emphasis on individual recovery and resilience will transform not only service delivery systems but also hearts, minds, and lives for future generations.
The Federal Mental Health Action Agenda
Highlights of the Action Agenda follow, with an emphasis on those first steps that can yield immediate results. All action steps related to the principles of the Executive Order are delineated in the body of this report.
Principle A: Focus on the desired outcomes of mental health care, which are to attain each individual's maximum level of employment, self-care, interpersonal relationships, and community participation.
Initiate a National Public Education Campaign. SAMHSA will initiate a national public education campaign to improve the general understanding of mental illnesses and emotional disturbances across the age span. The public and private sectors will pool their resources and their expertise to plan, create, coordinate, and evaluate the campaign.
Launch the National Action Alliance for Suicide Prevention. HHS will launch the National Action Alliance for Suicide Prevention, a public-private partnership that will oversee full implementation of the National Strategy for Suicide Prevention. Coordinated national efforts to prevent suicide will be supported by a broad base of stakeholders in both the public and private sectors.
Educate the Public about Men and Depression. The National Institute of Mental Health (NIMH) will continue its "Men and Depression" Campaign, a major HHS public information effort to encourage men and their families to recognize depression-the disease that causes the most disability in America-and to seek treatment.
Develop Prototype Individualized Plans of Care that Promote Resilience and Recovery. SAMHSA will convene a consensus development meeting to discuss the meaning and process of recovery for children and their parents, adults, and older adults with mental disorders; review current best practices; and provide technical assistance to States and providers on the design and development of prototype individualized plans of care for children, adults, and older adults.
Promote Quality Services in the Workforce Development System for People with Psychiatric Disabilities. DOL will work with its Federal partners to promote the use of customized employment strategies; to promote the transition of youth with serious emotional disturbances from school to post-secondary opportunities and/or employment; to develop an employer initiative to increase recruitment, employment, advancement, and retention of people with mental illnesses; to conduct a pilot demonstration of early intervention employment strategies; to disseminate information on mental health issues through DOL grant initiatives and programs such as Work Incentive Grants, Customized Employment Grants, Chronically Homeless Grants, Incarcerated Veterans' Transition Program, Homeless Veterans' Reintegration Program, Veterans' Workforce Investment Program, Youth Offender Demonstration Program, Serious and Violent Re-entry Initiative, High School/High Tech Grants, Youth Demonstration Grants, and Ready4Work Grants; to assist youth with serious emotional disturbances involved with the juvenile justice system to transition into employment; to promote the employment of people with mental illnesses who are chronically homeless; to facilitate linkages between DOL's and SSA's joint Disability Program Navigator Initiative, SAMHSA, and related State and local mental health systems; and to establish a DOL Work Group to promote quality employment of adults with serious mental illnesses and youth with serious emotional disturbances.
Initiate a National Effort Focused on Meeting the Mental Health Needs of Children as Part of Overall Health Care. A Task Force of the Federal Executive Steering Committee on Mental Health (described below under Principle B) will develop a national public education initiative for parents, providers, and policy makers about the importance of the first years of life in developing a healthy foundation for social, emotional, and cognitive development. The Task Force also will propose a comprehensive approach at the Federal and State levels to appropriately assess, with parental consent, children identified to be at risk for mental disorders in early childhood settings, educate and train professionals and families in effective treatment approaches and supports, and eliminate barriers to serving this population.
Launch a User-Friendly, Consumer-Oriented Web Site. SAMHSA's Center for Mental Health Services (CMHS) will explore investing in the development of a user-friendly, consumer-oriented web site in 25 geographically diverse locations around the country. The web site will provide information on mental illnesses and community resources and give individuals and family members the ability to create personal health records on a secure server; the privacy of such records is protected according to Health Insurance Portability and Accountability Act (HIPAA) regulations. The Federal funding will serve as seed money to the local jurisdictions.
Protect and Enhance the Rights of People With Mental Illnesses. The Office for Civil Rights (OCR) will carry out the specific recommendation of the New Freedom Commission on Mental Health to continue Olmstead voluntary compliance initiatives, including providing technical assistance to States in conjunction with other HHS components, disseminating information about Olmstead compliance, and promoting ADA compliance and community care.
Principle B: Focus on community-level models of care that effectively coordinate the multiple health and human service providers and public and private payers involved in mental health treatment and delivery of services.
Launch the Federal Executive Steering Committee on Mental Health. HHS will lead an intra- and inter-agency Federal Executive Steering Committee to guide the collaborative work of mental health systems transformation. Members will be high-level representatives from agencies within HHS and from other Federal departments that serve children, adults, and older adults who have mental disorders. The group will provide ongoing stewardship for the work that has resulted from the New Freedom Initiative and the President's New Freedom Commission on Mental Health.
Include Eliminating Disparities in Mental Health Services as Part of the HHS "Close the Gap Initiative." A Task Force of the Federal Executive Steering Committee on Mental Health will work closely with the Secretary's Health Disparities Council to ensure that eliminating disparities in mental health services is integral to the Department's overall "Close the Gap Initiative."
Create a National Strategic Workforce Development Plan to Reduce Mental Health Disparities. A Task Force of the Federal Executive Steering Committee on Mental Health will convene selected behavioral health care leaders from both the public and private sectors to create and manage a national strategic planning process. The national strategic plan will be designed to develop a mental health workforce better able to deliver culturally competent, evidence-based, 21st century health care.
Initiate a Project to Examine Cultural Competence in Behavioral Health Care Education and Training Programs. SAMHSA will initiate a project to examine all current behavioral health care education and training programs that receive Federal funds to help determine the extent to which they recruit and retain racial and ethnic minority and bilingual trainees, emphasize the development of cultural and linguistic competence in clinical practice, develop appropriate curricula, engage minority consumers and families in workforce development and training, and educate trainees about evidence-based mental health interventions.
Develop a National Rural Mental Health Plan. A Task Force of the Federal Executive Steering Committee on Mental Health will work with the HHS Secretary's Rural Task Force to identify and convene key leaders in both the public and private behavioral health care sectors and will provide leadership and logistical support toward the development of a national rural mental health plan. The plan will address the integration of mental health and physical health care, financing incentives, alternative insurance mechanisms, workforce enhancement programs, and the effectiveness of telehealth technologies.
Promote Strategies to Appropriately Serve Children With Mental Health Problems in Relevant Service Systems. Serious emotional disturbance (SED) in childhood can be an important precursor to the development of serious mental illnesses as an adult. Supporting the mental health of children and adolescents with SED and their families is a strategic investment that will create long-term benefits for individuals, systems, and society. HHS agencies-together with ED and DOJ, mental health consumers, parents, and youth-will gather and review current screening instruments to determine which are developmentally, culturally, and environmentally appropriate for children. This Federal review group will assess the feasibility of implementing one or a combination of these instruments across service systems in which children identifi ed to be at risk for mental disorders present for care and where providers can work with parents to link children to appropriate services and interventions, as needed.
Include Mental Health in Community Health Center Consumer Assessment Tools. Mental disorders may go undiagnosed, untreated, or under-treated in primary care. SAMHSA, the Centers for Disease Control and Prevention (CDC), and the Health Resources and Services Administration (HRSA) will collaborate to facilitate serving adults and older adults identified to be at risk for depression and, with prior parental consent, children and adolescents identified to be at risk for mental, emotional, and behavioral problems in federally funded Community Health Centers and to coordinate followup treatment with community mental health agencies or other appropriate providers.
Principle C: Focus on those policies that maximize the utility of existing resources by increasing cost-effectiveness and reducing unnecessary and burdensome regulatory barriers.
Initiate Medicaid Demonstration Projects. The Centers for Medicare and Medicaid Services (CMS) will support demonstrations (as authorized and funded by Congress, where required) of supported employment, respite care services for caregivers of adults or children with disabilities, alternatives to psychiatric residential treatment for children with serious emotional disturbances, efforts that promote self-determination and consumer direction in mental health service systems, and systems of fl exible financing for long-term care that allow money to follow the individual.
Help Parents Avoid Relinquishing Custody and Obtain Mental Health Services for Their Children. The Commission decried the fact that some parents have been forced to relinquish custody to obtain needed mental health services for their children. The HHS will lead an effort among Federal agencies to implement a multifaceted approach across systems with the goal of ending this tragic practice and increasing families' access to home- and community-based services and systems of care for their children with serious emotional disturbances.
Support the Ticket to Work Program. The Ticket to Work and Work Incentives Improvement Act of 1999 addresses many of the work disincentives faced by people receiving Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI), such as loss of cash benefits and medical coverage. As part of its overall support for the Ticket to Work Act, CMS will release a solicitation to provide health care and other support services to individuals, including those with serious mental illnesses, who may be at risk of losing employment and independence. This solicitation will be for the Demonstration to Maintain Independence and Employment. Additionally, CMS will provide assistance to States through a Medicaid Infrastructure Grant Program. The Medicaid Infrastructure Grant Program for 2004 includes a provision that will allow States to propose the use of funding to lessen or remove the primary barriers to employment for adults with disabilities through a comprehensive, coordinated approach between Medicaid and non-Medicaid programs.
Educate Employers and Benefits Managers on the Practicability of Paying for Mental Health Services. A multidisciplinary group of mental health consumers, corporate benefit managers, health care consultants, pharmacy benefit managers, and Employee Assistance professionals will be invited to form an Employer Toolkit Workgroup to review the work of the New Freedom Commission on Mental Health and to suggest a comprehensive approach for employers in selecting and purchasing mental health services.
Develop a Strategy to Implement Innovative Technology in the Mental Health Field. SAMHSA will convene a consensus development workgroup to review the current status of telemedicine, information technology, Internet technology, and electronic decision support tools in health care; examine the current status of implementation of these tools in mental health; and prepare key recommendations for immediate next steps in technology support for mental health services.
Explore Creation of a Capital Investment Fund for Technology. SAMHSA will explore the creation of a Capital Investment Fund for Technology to work with States to design and implement an electronic health record and information system that incorporates an individualized plan of care and is consistent with the proposed Comprehensive State Mental Health Plan. The electronic health record will provide decision support to consumers and service providers and will offer an unprecedented, real-time disease management system.
Principle D: Consider how mental health research findings can be used most effectively to influence the delivery of services.
Accelerate Research to Reduce the Burden of Mental Illnesses. Building on the discoveries emerging rapidly from the decoding of the human genome and from new, more powerful imaging techniques, NIMH will reorganize and streamline research to produce new interventions. The ultimate goal will be to prevent or cure mental illnesses.
Expand the National Registry of Evidence-Based Programs and Practices to Include Mental Health. SAMHSA will expand its National Registry of Evidence-based Programs and Practices (NREPP) to include the best evidence-based mental illness prevention and treatment interventions. The Agency will develop a procedure to identify, review, and summarize evidence-based practices; survey the implementation of evidence-based practices in parallel fields, such as primary care; and recommend a procedure through which consensus might be developed across key mental health groups, consumers, and family members regarding implementation of evidence-based practices.
Develop New Toolkits on Specific Evidence-Based Mental Health Practices. To disseminate more broadly known, evidence-based practices to the field, SAMHSA will expand its National Evidence-Based Practices Project with the addition of toolkits in areas that may include children's services, supportive housing, older adults, trauma and violence, collaborative models in primary care, consumer-operated service approaches, and supported education.
Expand the "Science-to-Services" Agenda. SAMHSA and the National Institutes of Health (NIH) have begun a formal "Science-to-Services" agenda to further develop and expand evidence-based practices in the field. CMHS and NIMH are spearheading this effort for the area of mental health. To enhance this effort, a Task Force of the Federal Executive Steering Committee on Mental Health will work with HHS agencies to identify those evidence-based and promising practices that warrant further research, those that are ready for fi eld implementation, and those that can and should be funded at the State and local levels.
Conduct Research to Reduce Mental Health Disparities. NIMH is expanding its support for programs that conduct research to reduce health disparities by issuing a new program announcement (2004) for the development of Advanced Centers for Mental Health Disparities Research. The Institute also will continue its support for the Disparities in Mental Health Services Research Program, the Socio-Cultural Research Program, the Office of Special Populations, and the Office of Rural Mental Health.
Principle E: Follow the principles of Federalism, and ensure that [the Commission's] recommendations promote innovation, flexibility, and accountability at all levels of government and respect the constitutional role of the States and Indian tribes.
ward State Mental Health Transformation Grants. SAMHSA's Center for Mental Health Services (CMHS) will continue to support 3-year State Mental Health Transformation Grants. These grants are designed to assist States in their efforts to develop a Comprehensive Mental Health Plan, build mental health services infrastructure, and to promote implementation of science-based mental health interventions.
Award Child and Adolescent State Infrastructure Grants. SAMHSA will continue to support Child and Adolescent State Infrastructure Grants to States. These grants help States increase their system infrastructures to support mental health and/or substance abuse services and programs for children and adolescents with mental, substance use, and/or co-occurring disorders. These 5-year grants will complement the State Mental Health Transformation Grants.
Establish a Foundation for the Samaritan Initiative. Based on experience with the $35 million Collaborative Initiative to Help End Chronic Homelessness, the President proposed the Samaritan Initiative at $200 million in his Fiscal Year 2005 budget. This initiative would provide funding for permanent supportive housing for people who experience chronic homelessness.
Initiative for Ex-Prisoners With Psychiatric Disabilities. HUD's 2006 budget request includes $25 million as a part of a prevention initiative for prisoners returning to the community, many of whom are struggling with serious mental illnesses. HUD will collaborate with DOL and DOJ in this effort.
Award Seclusion and Restraint State Incentive Grants. SAMHSA will continue to support grants designed to enhance State capacity to provide staff training to implement alternatives to seclusion and restraint in mental health care settings. These grants will support programs in eight States as well as a Resource Center, which will act as a central repository on effective practices to reduce and eliminate seclusion and restraint and provide technical assistance to the grantees.
Moving Forward
Transformation is a long-term process, but this Action Agenda can and will be initiated in the first year of a multi-year effort to transform the form and function of the mental health service delivery system in America. Each step requires the full commitment of the agencies and individuals involved, and all steps speak to the need for the public/private partnerships that will make the Commission's vision a reality. Ultimately, the Action Agenda is a living document that will move the Nation closer to the day when adults with serious mental illnesses and children with serious emotional disturbances will live, work, learn, and participate fully in their communities.
[1] Delivering on the Promise. Preliminary Report of Federal Agencies' Actions to Eliminate Barriers and Promote Community Integration. Presented to the President of the United States, December 21, 2001.
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