Timothy A. Kelly, Ph.D.
George Mason University
January, 2000
An estimated 5.6 million Americans suffer from severe mental illness. It strikes without regard to age, gender, race, education, socioeconomic status, culture, or ideology. In many cases it brings suffering not only to the individual but also to family and friends. Depression, which causes many of the 30,000 suicides in America each year, especially targets the elderly. Schizophrenia tragically afflicts some of America’s best and brightest adolescents. Persons with mental illness deserve compassionate support, but are often met with fear and stigma. They need effective treatment, but are too often offered ineffective care, if any at all.
The economic costs of mental illness are staggering. America spends over $69 billion yearly on direct treatment costs. Virginia is a case in point: It spends over $1 billion for publicly funded psychiatric care each year; per-bed-year costs of hospitalization run between $108,000 and $175,000. There are long waiting lists for community services, and many persons with severe mental illness are caught in a vicious circle. They enter a psychiatric hospital for treatment, are discharged back to their home community with no effective follow-up care, and end up homeless or back in the hospital. In addition, it is not unusual for those with private insurance to end up in public care once their limited coverage is exhausted.
Current mental health policy tends to support the status quo system regardless of the effectiveness of services, wasting precious resources that could be redirected to help those who are not receiving needed care. Worse, current policies doom many persons with mental illness, the self-termed "survivors" of the defective service system, to lives of marginal functionality and dependency when, with effective treatment and more compassionate care, they would be capable of productive independent living.
This must not continue. America has the compassion, resources, and treatments to care effectively for its citizens who suffer from severe mental illness. Federal and state policymakers must make comprehensive reforms in mental health care that are based on seven key principles: treatment quality, treatment access, consumer choice, personal independence and productivity, self- and family participation, provider accountability, and government responsibility for treatments that improve the quality of life for persons with mental illness. A system based on these principles would enable individuals and their families to manage the challenges and weather the heartbreaks of mental illness much more effectively.
Reforms that incorporate these recommendations would ensure America develops a comprehensive mental health care system that truly meets the needs of persons with mental illness, providing compassionate and effective treatment and helping many return to productive lives. Federal and state policymakers must resist the temptation to make only slight modifications to the status quo and declare victory. The current system is broken and can only be fixed with far-reaching reforms that will not come easily.
It is not compassionate to fund failure. Principled mental health reform calls for raising expectations, measuring progress, rooting out failures, and insisting that America can do better for these, its most vulnerable citizens. America has the resources, compassion, and effective treatments necessary to make this happen, and the time to act is now.
—Timothy A. Kelly, Ph.D., a licensed clinical psychologist, is a Visiting Research Fellow at the George Mason University Institute of Public Policy. From 1994 to 1997, he was the Commissioner of Virginia’s Department of Mental Health, Mental Retardation, and Substance Abuse Services.
An estimated 5.6 million Americans suffer from severe mental illness, which often profoundly affects both their lives and those of their families. Mental illness strikes without regard to age, gender, race, education, socioeconomic status, culture, or ideology. Depression, which causes many of the 30,000 suicides in America each year, especially targets the elderly. Even the young are not immune—schizophrenia tragically afflicts some of America’s best and brightest adolescents. For many, mental illness is a life-long burden they must bear alone. They deserve compassionate support, but too often are met with fear and stigma. They need effective treatment, but too often are offered ineffective care, if any at all. Some wander the streets, speaking to unseen specters. Some languish in the back wards of psychiatric hospitals or in nursing homes. Others are locked away in jails and prisons. But most live with their families and work in their communities, carrying their anguish privately. They often refer to themselves as "survivors," not just of mental illness, but of a mental health care system that needs genuine reform.
The economic costs of mental illness are staggering. America spends over $69 billion on direct treatment costs each year. The Commonwealth of Virginia, for example, spends over $1 billion each year on publicly funded psychiatric care alone (not including private care), paying between $108,000 and $175,000 per hospital bed-year for adult inpatient care. Despite such vast dedicated resources, in most states there are long waiting lists for community services. Many "survivors" with severe and persistent mental illness are caught in a vicious circle: They enter a state or private psychiatric hospital for treatment and stabilization, are later discharged to the home community with no effective follow-up care, only to deteriorate and end up homeless or back in the hospital. It is also not unusual for persons with mental illness who have private insurance to begin private treatment but eventually end up in public care once their limited coverage is exhausted.
Current mental health policy tends to support the status quo, funding services regardless of effectiveness and wasting precious resources that could be redirected to treat those who need care the most or who are not receiving care at all. Moreover, current policies doom many "survivors" to lives of marginal functionality and needless dependency, even though they would be capable of productive independent living if they were to receive effective and compassionate care.
This must not continue. America has the compassion, resources, and treatments to care effectively for its citizens who suffer from severe mental illness. The time is right for federal and state policymakers to make sweeping comprehensive reforms to the current system, not by throwing more resources blindly at failed approaches or pleasing special interest groups, but by providing compassionate and effective treatment services and holding the agencies involved accountable for quality care.
Reforming the current mental health system using these principles would enable individuals and their families to manage the challenges and weather the heartbreaks of mental illness much more effectively.
To implement such a system, the federal government should consider the following steps: block granting Medicaid to the states; encouraging states to innovate with federal funds not block granted in order to test the effectiveness of new treatment approaches; coordinating the efforts of federal agencies involved with mental health; developing standardized measures of performance and outcomes; increasing funding for treatment development and research; defining severe and persistent mental illness so that resources can be focused on those with severe needs; and changing the federal tax structure of health insurance to maximize coverage options and increase consumer choice.
At the same time, state governments should take steps to: close unneeded psychiatric facilities; fund new community services; hold mental health providers accountable; break the state monopoly on public mental health services; evaluate prevention and early intervention programs; promote comparable insurance coverage for mental and physical health benefits; and establish safeguarded outpatient commitment as a viable alternative to homelessness and hospitalization.
These reforms would enable policymakers at the federal and state level to create a comprehensive mental health care system that truly meets the needs of persons with mental illness compassionately and effectively, and would help many of them return to productive lives in their own community. Legislators, however, must resist the temptation to make only slight modifications to the status quo and then declare victory. The current system is broken, and can only be fixed with far-reaching reforms that will not come easily.
Mental health policies today are far better than those of decades past when "treatment" frequently meant criminalizing or institutionalizing persons with mental illness. With the discovery of anti-psychotic medications in the 1950s, deinstitutionalization of persons with mental illness became possible, and many for the first time were able to be discharged from psychiatric institutions. Since that time the community mental health system gradually evolved, intended to provide support and services in the home community.
In both cases—deinstitutionalization and community mental health care—the fundamental policy concepts were correct. It is best for institutionalization to be rare and short-term, and it is best for communities to care for people close to home. Unfortunately, viable goals and good intentions did not lead to well-designed policies. The results have more often been rigid federal guidelines and monopolistic state service delivery systems that inadvertently promoted dependency and homelessness, rather than independence and productivity.
These problems heighten frustration and increase calls for Washington and state legislators to do something. Americans with mental illness, as well as their families, are no longer content simply to receive whatever care or coverage is offered. This is seen most clearly in the rise over the past decade of mental health consumer and advocacy groups such as the National Alliance for the Mentally Ill (NAMI). NAMI and other such organizations are becoming increasingly active in lobbying at both the federal and state levels, pushing for improved quality of care and access and attempting to eradicate the stigma of mental illness. They are demanding greater participation in all levels of the policy development process.
Consequently, federal and state legislators are being pressured to address a growing number of challenging mental health policy issues without an adequate knowledge of the problems or a comprehensive policy framework to guide them. On the federal level, for example, Congress is considering a number of measures:
Such policy issues and questions are coming before legislators not only on Capitol Hill but in every state capital in the nation. Public debate on these matters is sporadic at best and usually flares up around a single issue that captures the media’s attention for a short time. What is needed, however, is a more careful, comprehensive, and deliberative process that takes into account a reform of the whole mental health system, not just one of its components.
For mental health system reform to be comprehensive and enduring, it must be based on the right principles. The following seven key principles, which have been formulated from a review of the relevant literature and over 20 years of service in the mental health arena, are intended to provide a solid basis for comprehensive reform of the current mental health system. Such reform would ensure compassionate and effective care for persons with mental illness and their families.
Principle #1: Increase quality of care by measuring outcomes and funding only those treatments that work; any savings realized should be reinvested in creative and proven state-of-the-art services. All too often, mental health professionals intervene in the lives of persons with mental illness without making every effort to measure and document the outcome of their intervention. One unintended outcome is homelessness, as the vicious circle of institutionalization and discharge without effective follow-up described above points out. The question of which treatment works best for each individual should be continually raised and scientifically addressed throughout the service delivery system. Scientifically tested measures have been piloted in the real world of service delivery and are available. Mental health care will improve when it is driven by results—when it becomes evidence-based.
Principle #2: Increase access by moving toward mental health coverage—for people with severe mental illness—that is comparable to physical health coverage. Public and private insurers should be motivated to offer comparable physical and mental health coverage. Policymakers should make sure they recognize the critical importance to society of effective mental health services, as opposed to just physical health care. They must also recognize the growing market for insurance products that cover legitimate needs, including treatment for severe mental illness. It is critical, of course, that increased coverage does not simply fund the expansion of the status quo.
Principle #3: Increase consumer choice by restructuring tax law and increasing treatment options. Tax law should be revised to allow deductions for employee-owned portable insurance policies. This change would make insurance products more flexible, a market-driven commodity owned by those who pay for them rather than their employers. Such products should offer mental health coverage and choice among competitive providers.
Principle #4: Increase independence and productivity by ensuring that treatment programs help persons with mental illness find fulfillment through real work, a real home, and real relationships. The goal of all interventions must be to enable persons with mental illness to live and function as independent and valued members of their communities to the fullest, most realistic extent possible. The somewhat controversial but important concept of outpatient commitment is relevant here, because it would provide a legal framework within which community treatment can be assured. Far better to be in the home community through safeguarded outpatient commitment than to be on the streets or hospitalized.
Principle #5. Increase consumer and family participation in the development of service policies, and in the evaluation of treatment and provider effectiveness. Policymakers and insurers must no longer assume that the policies they develop and implement autocratically will be accepted automatically by those covered. At a reasonable point in the deliberative process, it is necessary to include those individuals and their families whose lives will be affected by the decisions reached. In addition, consumers of mental health services must be given an opportunity to rate the quality and effectiveness of the care they receive. This information, in aggregate form, would enable legislators and policymakers to identify and support the most effective programs.
Principle #6. Increase provider accountability by replacing the monopolistic public mental health system with open competition. This would require opening the public sector to private providers, linking contract renewal with provider performance, and regularly publishing both public and private provider performance assessments. Such accountability would dramatically improve the quality of care, since that which is measured tends to improve.
Principle #7. Increase federal and state government responsibility for improving the quality of life for persons with mental illness through their mental health reforms. Compassionate and effective mental health reform should yield dramatic improvements in the lives of those receiving care. Standardized outcome data would provide comparative information on how well each state or program is doing in that regard. State and federal agencies should be held accountable for program results and pay a price if significant yearly improvements are not forthcoming. On the federal side, effort must be made to bring coordination and coherence to the numerous agencies that oversee various components of mental health research, policy development, funding, laws, and programs. These agencies should work together formally and creatively to achieve the same goal—principled mental health system reform.
On the state side, policymakers should become more proactive in legislating comprehensive reform guidelines for public and private providers of mental health services. The current piecemeal approach is wasteful, ineffective, and will not result in mental health system reform. Adding a few programs to the status quo will not dramatically improve the lives of persons with mental illness.
Guided by these principles, it is possible to develop strategic recommendations for federal and state legislators to enact comprehensive reform of the mental health system. Federal and state laws and regulations set the parameters for mental health services across the country. When all is said and done, improving care and creating new opportunities to help persons with mental illness will benefit not only those individuals, but their families and communities as well.
Some of the Many Federal Agencies Dealing with Mental Health
Department of Housing and Urban Development.
Department of Justice
Department of Labor
Department of Veterans Affairs
Health Care Financing Administration
National Institute of Alcohol and Alcohol Addiction
National Institute of Drug Addiction
National Institute of Mental Health
Office of Personnel Management
Social Security Administration
Substance Abuse and Mental Health Services Administration
The Program for Assertive Community Treatment (PACT). Psychiatric hospital workers created PACT after seeing many of their patients return to the hospital after release because of poor follow-up care in the community. Under PACT, hospital-level teams of mental health professionals are put on the street to work with persons with severe mental illness on a 24-hour, seven-day-a-week basis. PACT strives to provide top-quality clinical and practical resources to a community and to do whatever it takes to help recipients succeed. This commitment could mean monitoring medications at midnight, helping someone overcome a problem at work, or providing psychotherapy in the home. Research demonstrates that this program is both clinically effective and cost effective, especially for those who are the most treatment-resistant.
Atypical Medications. New medications are available for treating many mental illness diagnoses, including schizophrenia. For some, these medications can have an almost miraculous effect, allowing those who have been hospitalized for years to return home and function well. They are more costly than typical medications, but much less costly than inpatient care.
Telepsychiatry. Like telemedicine, teleconferencing technology allows a patient to link up with a doctor or treatment team that may be too far away to visit in person. It is especially useful for psychiatric evaluations of persons in rural environments who would have to travel long distances for evaluation or care. It also has been used to avoid prolonged hospitalizations; patients are sent home with a laptop computer equipped with video camera. The technology allows them to check in as needed with their psychologist or psychiatrist from their homes.
Clubhouses and Drop-In Centers. A "clubhouse" staffed by professionals and a "drop-in center" staffed by volunteers are treatment options that offer much-needed social support for persons with severe mental illness. They vary greatly in their effectiveness, depending on their focus and on how well they are managed and funded. Centers that provide more than social support, including comprehensive employment services, seem to be most effective in helping persons with mental illness function better in their home communities.
Faith-Based Programs. There is a growing recognition of the value and effectiveness of faith-based programs for some persons with severe mental illness. For that reason, the federal government recently began to loosen restrictions on funding such programs. These programs provide a potentially huge and relatively untapped resource that communities can use as they move ahead with mental health reforms. People of faith and persons with mental illness could be linked on a volunteer basis for friendship and support, or critical services (such as residential drug rehabilitation or PACT services) could be contracted out to a faith-based organization such as the Salvation Army.
With these mental health system reforms in place at both the federal and state levels, persons with mental illness and their families would find care dramatically improved and would have greater opportunity to participate in the system. They could reasonably expect a responsive and compassionate system of mental health treatment options that are based on proven results.
The benefits to these individuals and their families would include:
This year has seen two milestones in mental health policy: the first White House Conference on Mental Health and the first Surgeon General’s Report on Mental Health. Federal policymakers are beginning to address the complex but critically important policy issue of mental health system reform. The question is whether they will address it in a fragmented manner, perhaps increasing government regulation and price controls, or in a comprehensive manner based on clear reform principles. The former strategy will expand mental health bureaucracies but lead to little real change. If the lives of persons with severe mental illness and their families are to improve dramatically, then dramatic action is required—with principled, system-wide mental health reform.
The current problem is not that nothing is being done. For example, the Commonwealth of Virginia is moving ahead with a pilot project to develop and incorporate performance and outcome measures for the state’s mental health care system. The state of Texas is piloting new ways to contract out for community service and has led the way in developing outcome measures for psychiatric facilities. These steps are moving in the right direction; but at the same time, there is often fierce opposition to other critical changes, such as closing unneeded facilities and reinvesting in community services, or allowing for competition and outcome-based accountability. Without these critical components, mental health system reform will occur sporadically at best. Sacred cows cannot be tolerated alongside genuine reform efforts, for they doom persons with severe mental illness to second-rate care.
Much has been written about the need to overcome the stigma and fear associated with mental illness, especially in light of highly publicized cases of violence and homelessness of persons who refuse or cannot find treatment. Genuine mental health system reform would address both of these concerns far more effectively than would an advertising campaign. The public’s stigma and fear will subside as greater numbers of persons with severe mental illness become productive citizens in their home communities, supported by compassionate and effective care.
It is not compassionate to fund failure. Principled mental health reform calls for raising expectations, measuring progress, rooting out failures, and insisting that America can do better for some of its most vulnerable citizens—persons with mental illness. America has the compassion, resources, and treatments to make this happen, and the time to act is now.
—Timothy A. Kelly, Ph.D., a licensed clinical psychologist, is a Visiting Research Fellow at the George Mason University Institute of Public Policy. From 1994 to 1997, he was the Commissioner of Virginia’s Department of Mental Health, Mental Retardation, and Substance Abuse Services.