When the MacArthur Foundation was established in 1978, one of the first issues we addressed through our grantmaking was how to improve the way this nation provides for the treatment and care of people with mental illness.
When we first took on the issue, we were surprised at how little was known about effective treatments. So our first ventures were in research, in an effort to identify and fill gaps in knowledge about the origins and course of mental illness and the biological, psychological, and social factors that promote healthy, successful development across the lifespan.
Today the research base and body of knowledge about mental illness has vastly expanded, with much of that work supported by MacArthur’s investment of more than $125 million. The central issues now concern the ways in which services are organized and delivered and the policies that shape the delivery system. The mental health care system is astonishingly fragmented, with financing split between the public and private sectors. And it has been transformed, for better and worse, through the emergence of managed care.
No longer is there a question about whether effective treatments for mental illnesses exist. They do. The challenge now is to move past the barriers to seeking and receiving treatment and to bring the results of research to the service of those in need around the world. To that end, MacArthur has provided assistance to the World Health Organization and the World Bank to make mental health a higher priority in their public health work.
Today MacArthur’s grantmaking in the field of mental health focuses on the goal of improving access to effective and efficient mental health services by helping to move the most promising advances from research into policy and practice.
In this issue of the MacArthur Foundation’s newsletter we discuss the extent of the challenge posed by mental illness, the opportunity to improve treatment and care and, of course, the work supported by the MacArthur Foundation in an effort to help address one of this country’s most pressing public health needs.
As always, we welcome your comments.
Jonathan F. Fanton
Mental illness is as real and as burdensome – to the individual and society – as any other illness or infirmity. Thanks to breakthroughs in just the last quarter century, mental illnesses are as amenable to treatment as other medical conditions. The treatments offer good value for the cost in terms of decreased disability, improved functioning, greater productivity, and less personal distress.
While much of this newsletter will focus on problems to be addressed, it is worth reviewing the progress made over the past 25 years in the field of mental health. There has been much progress, but much hard work lies ahead. According to a landmark report on mental illness issued by the U.S. Surgeon General in 1999, the vast majority of people with mental disorders still do not receive effective treatment.
When people who need mental health care do not receive it, the cost to individuals and their families, their communities, and to society is enormous. For individuals and families the cost is measured largely in terms of pain and suffering and the inability to function in the home or workplace. The stigma of mental health adds isolation, distrust, and discrimination to the burden. For other social systems the impact of mental illness is destabilizing. The criminal justice system, the juvenile justice system, child welfare, and the system for social welfare have each become major sources of care for children and adults with mental illness.
It is clear that improving access to mental health treatment and services would lift a huge burden from individuals and from society. Part of the solution requires untangling the extraordinarily complex organization and financing of the U.S. mental health system.
There is no question about the challenges involved in addressing the nation’s mental health needs. But a sense of opportunity outweighs pessimism. In just the last few years several factors have combined to change the debate about providing mental health services to all who need them, including two mental health care bills signed by President Bush in 2004:
- The Garrett Lee Smith Memorial Act, which provides funds for mental health interventions to prevent suicide.
- The Mentally Ill Offender and Treatment Act, which authorizes $50 million in federal grants to states to support pre- and post-booking mental health interventions.
Recognizing that the time is ripe for change, many organizations have come together to form the Campaign for Mental Health Reform, with the objective of advancing mental health as a national priority. These groups, many of them receiving funding from MacArthur, are helping build a base of evidence, practical knowledge, and tools that can be used to inform effective law, policy and practice. Participants in the Campaign include the Bazelon Center for Mental Health Law, National Alliance for the Mentally Ill, National Mental Health Association, and National Association of State Mental Health Organizations.
The MacArthur Foundation’s grantmaking in the field of mental health has taken place in two phases. The first was designed to fill in the knowledge base. Today it focuses on bringing knowledge to practice, primarily through an impact on policy.
MacArthur's Focus on Research
When entering the mental health field about 25 years ago with a focus on filling in the gaps in knowledge, MacArthur created interdisciplinary research networks designed to focus on specific areas of research. MacArthur networks have developed research instruments and clinical tools that are standards in the field. Topics and approaches pioneered by the networks have become mainstream. The network model has been adopted by others, including federal research initiatives at the National Institutes of Health and the National Science Foundation.
The MacArthur Research Network on Mental Health and the Law: One of those networks, The MacArthur Research Network on Mental Health and the Law, focuses on the competence of people with serious mental illness to make decisions such as accepting or refusing treatment, how patients come to experience the receipt of treatment as “coercive,” and the relationship between mental disorder and violence. Under director Dr. John Monahan of the University of Virginia, the Network broke new ground on the issue of mental illness and violence, providing compelling evidence that an increased risk of violence is associated not with mental illness, but with the use of alcohol and drugs. The finding, which challenged a longstanding stereotype, has shifted practice and policy perspectives and is playing a prominent role in advocacy and public education efforts to reduce the stigma of mental illness.
The Initiative on Depression and Primary Care: Another project funded by the MacArthur Foundation, The Initiative on Depression and Primary Care, devised education interventions to help primary care physicians do a better job of diagnosing and treating depression, one of the most important reasons people visit their primary care physician in the first place. The researchers developed the Three Component Model (3CM), a way of improving depression management in health care organizations. The Department of Defense is working with the Initiative to develop a pilot program to use with soldiers returning from Iraq and Afghanistan. The Three Component Model is being implemented by several large medical groups, a regional health insurance plan, and a statewide Medicaid program. Recently, one of the nation’s largest insurers, Aetna, announced it has adopted the model to improve depression treatment. Research by the Initiative on Depression and Primary Care shows that 60 percent of those treated with the 3CM experience a 50 percent decrease in symptoms after three months compared with 37 percent who receive usual care.
Today the MacArthur Foundation’s grantmaking in mental health reflects the scientific advances in the field, the complex structure of the nation’s mental health system, and the impact of managed care. The strategy focuses on the goal of improving access to effective and efficient mental health services by helping to move the most promising advances from research into policy and practice.
An Emphasis on Removing Barriers to Receiving Treatment
The size and complexity of the mental health system in the country present many barriers to access. As the cost of health care continues to rise, and mental health services are increasingly viewed as discretionary, there is a growing risk that the remarkable progress in finding effective treatments will drift further out of reach for the majority of those who suffer from mental illness.
There are two types of barriers to access to mental health services. Some are barriers to seeking treatment such as the stigma of mental illness. Others are barriers to receiving treatment, usually financial, organizational, or a combination of the two. Lack of insurance and the complexity of the mental health system are two examples.
The MacArthur Foundation’s strategy is focused upon the barriers to receiving treatment because they are the ones that can be overcome by changes in law and policy and which can affect the greatest number of people.
Grants in the field of mental health focus on the general population; three specific subgroups: people with depression, children, and people with serious mental illesses; and to support education and communication.
The Mental Health Needs of the General Population: Grants to three organizations form the core of MacArthur’s work designed to help the general population. The Research Network on Mental Health Policy Research was originally formed by the Foundation to address policy changes under managed care and their effects on the mental health system’s performance and outcomes. During the course of its work, the Network found that the major policy challenge today is to improve the quality of care not only in traditional mental health care settings, but also in service sectors—education, criminal and juvenile justice, primary care, social welfare, housing—outside its boundaries. Its work is aimed at encouraging the implementation of evidence-based practice, improving mental health benefits in public and private financing arrangements; and ensuring fairness and equity in the management of mental health benefits. In an indication of the impact of this work, federal mental health parity legislation became law in 1996 and 37 states now have their own mental health parity provisions.
The Bazelon Center for Mental Health Law works through policy analysis and advocacy to advance policies and secure public resources for mental health services and supports. And the National Mental Health Association engages in advocacy and policy activities through its network of 340 state affiliates.
People with Depression: Through the Initiative on Depression and Primary Care the foundation seeks to enhance the quality of care received by patients with depression seen in primary care settings.
Mental Health Needs of Children: Children are the group for which there is the largest gap between research and practice, and for whom the delivery of services is most fragmented across different settings. There are two objectives for this area of work: to identify evidence-based treatments and make them practical for use in real-world settings; and to develop strategies that promote the adoption and implementation of interventions that have been shown to be effective. The primary recipient of MacArthur support for this work is the Research Network on Youth Mental Health Treatment. The Network focuses on the gap between state-of-the-art, evidence-based treatment and what is typically delivered in practice. Its objectives are to identify scientifically validated treatments, make them practical for use in clinical settings, and develop strategies to encourage and facilitate their implementation – bringing appropriate, effective, and efficient care to young people with mental illness.
People with Serious Mental Illnesses: Those who suffer from illnesses such as schizophrenia, severe depression, and bipolar disorder have complex service needs and the very visible signs of their disorders contribute heavily to the stigma of mental illness. Policy battles are underway in many states between those who are for and those who oppose legally-mandated adherence to treatment in the community. The Research Network on Mandated Community Treatment is building the base of knowledge about this issue from a broad range of perspectives: medical, psychological, economic, legal, political, and ethical.
There is growing interest across the country in what are known as psychiatric advance directives (PADs), in which a person would indicate a treatment preference before being incapacitated by mental illness. In addition to research on PADs by the Network on Mandated Community Treatment, a grant was awarded to Duke University for a joint project with the Bazelon Center for Mental Health Lawto develop a computer-based resource for people throughout the country seeking the most up-to-date information and tools to use in implementing a PAD.
Education and Communication
The Foundation also supports efforts to put new knowledge into the hands of consumers, advocates, practitioners, and policymakers. The National Mental Health Association, for example, uses Foundation funding to provide education and training so that its affiliates can participate in state-level health care reform activities. The Washington-based National Health Policy Forum focuses on Congressional staff and federal agency officials. The Bazelon Center for Mental Health Law is a leader in protecting the rights of people with mental disabilities by securing public resources that enable them to lead productive lives.
The Foundation has funded over the years the journal Health Affairs to support coverage of many mental health matters, including a special issue each year on mental health policy. Public radio, with its influential listening audience, broadcasts on 200 stations a weekly program called The Infinite Mind. The program seeks to dispel myths and stereotypes about mental illness by educating the public about the scientific and medical advances in understanding the brain, behavior, and the treatment of mental disorders.
The Foundation’s work in mental health has taken place during a period of 25 years in which there has been unprecedented progress in the field. We note with pride that people and organizations receiving MacArthur support have been involved in many significant developments in mental health over that period of time.
MacArthur’s research networks have helped shape the mental health policy debate for 25 years. Research network members served as writers, consultants, and reviewers for three of the most significant federal mental health policy reviews: the Surgeon General’s report in 1999, a follow-up report on race, culture and ethnicity in 2001, and the President’s New Freedom Commission on Mental Health in 2003. These efforts will frame the debate and ensure that sound research drives mental health policy today and in the future.
It would be easy to fall into the trap of thinking that with so much pressure on budgets at the state and federal level that little can happen in the field of mental health. We prefer to take the opposite view. The opportunity exists to restructure the mental health system in a way that will greatly improve access to and delivery of care.
The current system, with its many cost centers and duplication of effort, is ready for reform. It is not a matter of politics or ideology, but merely of what is right and just for individuals and for our society. The knowledge so carefully gained about how to treat mental illness should be put to use helping people through new, more effective service delivery models that are suited to the economic, political, and social environment of today.