New Freedom Commission Report: The President's New Freedom Commission: Recommendations to Transform Mental Health Care in America

During the 2000 presidential campaign, the National Mental Health Association conducted a survey of the candidates' views on several issues relevant to people with mental illness. In his response to the survey, then-Governor Bush announced his intention to establish a mental health commission to recommend reforms in the mental health service delivery system (2). The first mention of the Commission after the new administration took office was in a broad cross-disability action plan called the New Freedom Initiative, announced by the White House in February 2001. The initiative included ten proposals designed to "tear down the barriers that face Americans with disabilities today." It also included an announcement that a mental health commission would be created.

Some New Freedom Initiative programs were launched in the first months of the Administration. However, to initiate the Commission, the lead federal official responsible for mental health care—the administrator of the Substance Abuse and Mental Health Services Administration (SAMHSA)—had to be in place. With the appointment of Charles Curie to this post in November 2001, the work to develop a framework for the Commission could proceed.

National commissions examining mental health care are a rare occurrence; it has been a quarter century since the Carter Commission on Mental Health, and more than two decades before that to the Joint Commission on Mental Health. Thus the mental health field may not be aware that presidential commissions are appointed frequently to study various problems and make recommendations. The framework for presidential commissions has three core elements. Members and a chair are appointed by the White House, an Executive Order is issued by the President to define the charge to the group, and an executive director is also appointed by the White House.

Federal laws and regulations govern the operation of commissions. The current key laws are the Federal Advisory Committee Act (FACA) and the Freedom of Information Act. These laws ensure that decisions by these bodies are made in the open, with appropriate public notice, and that records are public. A commission staff member is designated as the FACA officer, who is responsible for ensuring compliance and who has the authority to shut down a meeting if the law is being violated. Once the core elements of a commission are in place, a federal agency—in this case SAMHSA—is designated to provide administrative support, and a charter establishing a budget and administrative parameters for the commission is approved by the relevant Cabinet Secretary.

Considering these parameters, the appointed and federal leaders of the New Freedom Commission on Mental Health reflected on how to proceed with the daunting task set by the President, within the mere 12 months allowed for the task. Several challenges and opportunities were evident. First, lessons from the experiences and results of the Carter Commission were still relevant a quarter century later. Second, mental health care has changed dramatically since the Carter era. Deinstitutionalization has been accelerated, and specialty mental health benefits were expanded in Medicare and Medicaid, adding rehabilitation and other specialty benefits beyond the basic services offered in hospitals, nursing homes, and physicians' offices. In addition, the past two decades have seen the devolution of public-sector care to localities, the development of new somatic and psychosocial treatments, and the emergence of managed care. Reviewing their impact would be an essential task of the Commission.

Third, the Commission's work followed major scientific and policy thrusts in mental health, such as the Decade of the Brain, the White House Conference on Mental Health, and the Surgeon General's reports on mental health, on disparities in care for minorities, and on suicide (3,4,5). Although these efforts had begun to elevate the significance of mental health issues—especially the emerging science of the brain—they had not addressed the implications for care systems. The Commission would need to consider scientific advances and link them to the real world of mental health care. Finally, emerging fiscal and political realities, such as the existence of a more mature and diverse mental health advocacy community, and the dynamics of the federal budget, including newly projected budget deficits, would need to be considered.

Describing all these factors in detail is beyond the scope of this paper, although they all directly shaped the Commission's work. However, several aspects of these issues were central and strategic. Our early review of the work of the Carter Commission included conversations with its Executive Director Tom Bryant. It was evident that the impact of the Carter Commission went beyond its recommendations and their implementation. Because Presidential attention to mental health is rare, use of the New Freedom Commission's processes and report to galvanize change at all levels—not just in the federal government—became imperative.

A particularly useful resource for understanding the impact of the Carter Commission was a 1991 inventory of the progress made since the release of the Commission's report and the development of the National Plan for the Chronically Mentally Ill (6). This review pointed out that much progress was achieved by staged, incremental, midrange changes in major federal programs such as Medicaid, Medicare, and Social Security, rather than by "big-bang" reform measures or increased support for specific mental health programs. In fact, the centerpiece of the follow-up to the Carter Commission report was the Mental Health Systems Act, which was passed by Congress in the waning months of the Carter Administration and then rolled back in the first budget of the Reagan Administration. Ironically, the major recommendation and accomplishment of the Carter Commission was thus ephemeral, whereas "smaller" recommendations developed after the Commission had a larger impact.

These experiences of the Carter Commission shaped our thinking. We determined that subcommittees of the New Freedom Commission would develop detailed reports on components of mental health care (see box below). The reports, which would be published later as working papers, would help create an agenda that could serve the field well in future years. In addition, the reports would help the Commission cover many aspects of a diverse field efficiently and would inform the final report to the President. Engaging experts to advise the Commission's subcommittees would provide a deep level of knowledge on each issue, balancing the practical and clinical experiences of Commissioners. The subcommittees would also provide an opportunity for leadership by Commission members on topics important to them.

A common-sense requirement for the Commission, which was echoed in conversations with veterans of similar efforts, including the Carter Commission, was to ensure ample input from the public and to maintain a good liaison with advocacy and professional organizations. An interactive Web site was set up to receive public comments; more than 2,300 individuals submitted concerns and ideas via e-mail. To ensure opportunities for public input, time was set aside at every meeting for public comment. Commission leaders met early with the Mental Health Liaison Group (MHLG), which includes representatives of all organizations that have a public policy or lobbying presence on mental health in Washington. Regular informal meetings with core members of the MHLG continued for the life of the Commission. Lead members of the MHLG developed shared recommendations for the Commission to consider, and as the final report was being prepared, they took steps to create a new advocacy coalition, the Campaign for Mental Health, to "speak with one voice" on the Commission's recommendations and other mental health advocacy issues. [Editor's note: Comments on the Commission's report from the Campaign for Mental Health Reform are presented in an accompanying article.]

In addition to the Commission's working meetings, which included testimony and presentations from invited experts, subcommittee deliberations, and public comment, the Commission held two meetings "on the road"—one in Chicago, which focused on children's issues, and one in Los Angeles, which focused on criminal justice, housing, and homelessness issues.

The Executive Order that established parameters for the Commission's overall work and final report also required the Commission to submit an interim report at six months. The interim report was required to "describe the extent of unmet needs and barriers to care within the mental health system and provide examples of community-based care models with success in coordination of services and providing desired outcomes." The interim report (7) identified five major barriers to care (see box on this page).

However, the aspect of the interim report that seemed to attract the most attention—and to set the stage for the final report—was the Commission's statement, "The system is in shambles." This language was criticized by some as too strong, but generally the feedback was, "Finally, someone is telling it like it is." The strong indictment of a failed system—thwarting the efforts of many talented and dedicated clinicians—set the stage for strong recommendations in the final report.

Throughout the Commission's deliberations, the theme of recovery kept emerging, with multiple meanings and implications. Although recovery is often thought of as an end state of complete wellness and freedom from illness, a more universal idea of recovery emerged from testimony and input from individuals with mental illness, who tended to describe recovery as a process of positive adaptation to illness and disability, linked strongly to self-awareness and a sense of empowerment. This view of recovery aligns with a definition developed by Anthony (8), who wrote that recovery "is a way of living a satisfying, hopeful, and contributing life even with the limitations caused by illness. Recovery involves the development of new meaning and purpose in one's life as one grows beyond the catastrophic effects of mental illness."

The Commission grappled with the multiple meanings of recovery and developed a shared view that the possibility of improvement and hope should be available to all individuals who have a mental illness, that complete remission would be achieved by some, and that the spirit of hope implicit in recovery is important. A visit with the Commission by former First Lady Rosalynn Carter solidified this view. Mrs. Carter described the work of the Carter Commission and advised on approaches that might be useful. She also commented on what she described as "the biggest single difference in mental health now, compared with the time of our Commission—today, we know that recovery is possible for every person with a mental illness."

Recovery had been validated in the 1999 Surgeon General's report on mental health (3), by President Bush in his remarks during the Commission's launch in Albuquerque, and by a former First Lady and longtime mental health advocate. The Commission determined that recovery—too often thwarted today by a fragmented system—should become a defining expectation of future mental health care.

The main requirements for the final report of the New Freedom Commission—its mission, goals, and principles—were specified in the Executive Order. The aspirations of recovery had emerged as an organizing theme. Recommendations were advanced by each of the subcommittees. Then the Commission turned its attention to overarching issues and cross-cutting recommendations to address the problem of fragmented care identified by the President.

The impact and magnitude of fragmentation had hit home during the Commission's deliberations. Fragmentation was the problem most frequently identified by individuals who sent e-mails to the Commission (9). In the words of a father who spoke at the Chicago meeting about his family's experiences, "The system is opaque."

Fragmentation has emerged as an unintended consequence of earlier reforms. The Commission's review identified no fewer than 42 different federal programs that might be used by persons with mental illness (10). Many of these programs are administered through different state and local agencies, and they often have different eligibility and application requirements. As a result, access to diverse, necessary elements of care is scattered, and consumers or families are frequently responsible for coordinating supports and services, often at times of crisis when their ability to accomplish this task is most compromised.

Other problems have been caused by the way in which programs have evolved over the past generation. Many of the federal programs that are most crucial to people with mental illness—Medicare, Medicaid, Social Security programs, vocational rehabilitation, housing, and special education—are mainstream programs in which mental illness is just one of a wide range of concerns. Persons with mental illness often fare poorly in these programs compared with other participants, perhaps because of the unusual combination of the extended course of mental illness, its episodic nature, and its significantly disabling aspects. For example, the number of people with mental illness-related disability in Social Security programs is large and rapidly growing, and emotionally disturbed children in special education programs and mentally ill adults in vocational rehabilitation programs have poorer outcomes than other participants. The scope of many mainstream programs is far greater than that of the only major federal program that specifically supports mental health care—the Mental Health Block Grant.

The complexity of these problems, and the resulting complexity of making changes in mental health care, is daunting. Multiple programs in multiple federal agencies are involved, yet most care is managed by states and localities. The various programs are governed by different statutes, shaped by diverse congressional committees, and guarded by multiple constituencies. The political dynamics between layers of government are complicated. It is clear that no single reform measure is sufficient to produce needed change, but it is also clear that simultaneous large-scale reform of multiple programs is unlikely to lead to the desired change, especially when mental health concerns—and therefore leverage—are relatively small in the context of major programs like Social Security, Medicare, and Medicaid. Faced with this challenge, the Commission began to grapple with an approach to change that would be both aggressive—because of the scope of the problem—and realistic—given the inherent challenges of change in this context.

This question must now, and continually, be asked. The members of the Commission are under no illusion that their report, no matter how responsive and well received, will by itself transform a fragmented and often troubled system. We have hope that the rare opportunity of having Presidential attention focused on mental health care, and having follow-through by the Administration, will make a difference.

When the final report was released, Health and Human Services Secretary Tommy Thompson designated SAMHSA administrator Charles Curie to take the lead for the Administration in developing a plan for follow-through. In August, Kathryn Power, former mental health director for the state of Rhode Island, began work as the director of SAMHSA's Center for Mental Health Services and was charged with taking the lead in developing the implementation approach. Having "point responsibility" firmly established for follow-through is a good sign.

Members of the Commission are also encouraged by the shared desire for change that emerged from consumers, family members, providers, and advocates—and by the collaboration among advocates and professional organizations that is occurring. In particular, creation of the Campaign for Mental Health Reform, a coalition of many of the leading advocacy and professional organizations in mental health, is a good sign. The campaign's member organizations are committed not only to working within their organizations—for example, with their state chapters—but also to advocating at the national level. Strong action at both levels will be important.

A concern the Commission heard frequently during the process was the hope that "the report must not sit on a shelf." Our view is that the Commission's report is a diagnosis and treatment plan for a system of care that is sick in many ways. But the system also has many strengths—effective treatments, dedicated clinicians, passionate advocates, and the essential ingredient of hope. Our experience suggests that developing a good treatment plan is necessary—but certainly not sufficient—for progress and recovery. Implementation activities must be both "top-down" and "bottom-up." On one hand, national leadership must be provided for activities such as antistigma campaigns and for change in federal programs. On the other hand, people recovering from mental illness can demand greater participation in the development of their treatment plans. In addition, many of the Commission's recommendations for change call for action at other levels of the system: university training programs must examine their curricula, provider organizations must take steps to become more culturally competent, and organizations and professionals at all levels must make efforts to adopt evidence-based interventions.

Given the complexity of mental health care, with payers and providers in multiple sectors at multiple levels, a simple plan for change is inadequate. This realization led the Commission to call for a transformation in care, not a simple reform. Only time will tell whether participants in mental health care can establish a shared commitment to the changes that are needed and whether the political and economic environments that we work in will allow, support, or thwart change.

There is no doubt that a transformation in mental health care is needed. The Commission, having completed its work, urges elected officials and all members of the mental health community to commit to that goal.

Dr. Hogan is chair of the President's New Freedom Commission on Mental Health and director of the Ohio Department of Mental Health, 30 East Broad Street, Columbus, Ohio 43215 (e-mail, [email protected]). This paper is part of a special section on the New Freedom Commission's report.