Transforming
the Mental Health System: Principles and Recommendations
The 111th Annual Convention of the American Psychological Association, Toronto, Canada
Timothy A. Kelly, Ph.D.
Fuller Graduate School of Psychology
August 10, 2003
Millions of Americans suffer from serious mental illness, which often profoundly affects both their lives and those of their families. Mental illness strikes without regard to age, gender, race, education, or socioeconomic status, and can lead to tragic outcomes. Depression, which causes many of AmericaÕs 30,000 suicides each year, especially targets the elderly. Even the young are not immune—schizophrenia tragically afflicts some of AmericaÕs best and brightest adolescents. For many, serious 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. Many are caught in a vicious cycle: 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. They often refer to themselves as Òsurvivors,Ó1 not just of mental illness, but of a mental health care system that is broken.
A recent Presidential Mental Health Commission concluded that AmericaÕs Òmental health care system is a patchwork relic . . . that all too often add(s) to the burden of mental illnessesÓ and is in need of Òfundamental transformation.Ó 2 The Commission declared that ÒAmericaÕs mental health service delivery system is in shambles, . . . (and) needs dramatic reform.Ó[3] These are stunning admissions for a Presidential Commission to make, and they support the survivorÕs point of view. Consequently, consumers and advocates now have a unique opportunity to take a leading role in transforming a broken system of care.
The problem is not that there is a lack of talented and dedicated providers, for there are many skilled clinicians who have a heart for those they serve. And the problem is not primarily a lack of resources (although additional funds could be put to good use). America currently spends over $69 billion on direct treatment costs each year[4] – an average of well over $1 billion per state. More may well be needed to meet demands, but nobody argues that current funding is as well spent as it ought to be. The problem is that the mental health care system, though it has come a long way, is moribund. Though there are notable exceptions, the system overall is fragmented, tradition-bound, and resistant to reform efforts. The status quo stifles innovation, and as a result consumers of mental health services too often receive inappropriate and ineffective care, or no care. The Presidential Mental Health Commission is right – the mental health system is broken and in need of transformation.
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 consumers 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 simply must not continue. America has the compassion, resources, and treatments to effectively care for its citizens who suffer from serious mental illness. The time is right for policymakers to implement sweeping mental health reforms, as called for by the Presidential Mental Health Commission. But how can AmericaÕs mental health system actually be transformed? What is the starting point? The starting point is to commit to a core set of principles that can guide the process of comprehensive mental health reform. Otherwise reform efforts will likely be sporadic, piecemeal and even contradictory.
The
following six principles, which have been formulated from a review of the
literature and over 30 years of service in the mental health arena,[5]
are intended to provide a foundation and framework for comprehensive reform of
the fragmented mental health system. The goal is to ensure that effective care
is provided for all persons with serious mental illness so that, to the extent
possible, each can have a stable home, a good job, and fulfilling
relationships.
Principle #1: Reform must improve quality of care by measuring outcomes and funding only those treatments that work. All too often, mental health professionals intervene in the lives of persons with mental illness without making an effort to measure and document the outcome of their intervention. As a result, there is little real-time data on which treatment works best for which consumer, and precious resources are wasted on inappropriate or ineffective care. The question of which treatment works best for which individual should be continually addressed throughout the service delivery system. Appropriate clinical outcome measures are available for this purpose, and relatively easy to use.[6] Since that which is measured tends to improve, routinely measuring actual clinical outcomes will inevitably improve the quality of care and advance needed mental health reforms. Outcome information helps the practitioner to ensure that treatment is maximally effective, and in aggregated form provides data for decision-makers managing program development and support. Most of all it helps those on whose behalf mental health services exist – men, women, and children with serious mental illness. It provides consumers with a significant voice in their own care through self-report surveys, and helps ensure the best treatment outcome based on their feedback. In short, mental health care will improve when it is driven by results—when it becomes outcome-evidence-based.
Principle #2. Reform must increase consumer choice and provider accountability by opening up the monopolistic public mental health system with competition and documented results. State laws should be revised to allow for all mental health providers (public and private) to compete for state-funded mental health services. This would require opening the public sector to private providers, linking contract renewal with performance, and regularly publishing both public and private provider performance assessments. Yearly Òreport cardsÓ could be produced so that consumers and policymakers alike could evaluate the overall effectiveness of services. It is likely that instituting report cards would in and of itself significantly improve quality of care, since it would serve as a powerful incentive for excellence. Furthermore, an open system would inevitably expand the array of services available for consumers to choose from, making it more likely that appropriate care could be selected.
Principle #3: Reform must increase access by moving toward mental health parity coverage. Policymakers should recognize the critical importance to society of effective mental health care, as they already do concerning physical health care. State legislators have it within their power to mandate parity between the two. Both public and private insurers should be required to offer comparable physical and mental health coverage. Furthermore, insurers should be encouraged to recognize the growing market for insurance products that cover legitimate needs well, including treatment for serious mental illness.
Principle #4: Reform must increase independence by ensuring that all treatment programs help persons with mental illness find fulfillment through real work, a stable home, and satisfying 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 families and communities to the fullest, most realistic extent possible. Those programs and treatments that can document this outcome should be supported. Those programs and treatments that exist simply to maintain the status quo should be phased out. It is not compassionate to fund failure.
Principle #5. Reform must increase consumer and family participation in the development of mental health policies, and in the evaluation of treatment and provider effectiveness. Policymakers and insurers must no longer assume that policies they develop and implement autocratically will be accepted automatically by those covered. Those individuals and families whose lives will be affected by the decisions reached must have a seat at the policy table. In addition, consumers of mental health services must be given an opportunity to rate the quality and effectiveness of the care they receive (see principle 1). This information, in aggregate form, would help legislators and policymakers to identify and support effective programs.
Principle #6. Reform must increase federal and state government responsibility for improving the quality of life for persons with mental illness through 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 if quality improvements are not forthcoming, and should be rewarded for success. This is not a time for Òbusiness as usual.Ó
Federal and state laws and regulations set the parameters for mental health services across the country. Guided by the six principles listed above, it is possible to develop strategic recommendations for how federal and state legislators can transform the mental health care system.
1. Develop standardized measures of performance and outcomes. Congress should require the National Institute of Mental Health (NIMH) to develop a scientifically derived catalogue of standardized performance and outcome measures that are appropriate for various aspects of mental health care. States should be encouraged to require providers—both public and private—to use these measures so that their outcomes may be comparatively evaluated, not only within each state but nationally as well. Much progress has been made toward developing research-based measurements for clinical outcomes, as mentioned above. However, a set of broadly supported, standardized mental health outcome measures needs to be selected and universally applied. The NIMH, perhaps in conjunction with the Substance Abuse and Mental Health Services Administration (SAMHSA), is well-positioned to accomplish this task and to offer the resultant product to the states with incentives.
2. Increase funding for research on mental health treatment and outcomes. Congress should increase funding for NIMH research on promising new mental health treatment approaches, and on the comparative effectiveness of current treatments. The NIMH should target funding toward ongoing national research on the effectiveness of specific treatments (using standardized measures) so that policymakers will have scientific, comparative data available on which to base their decisions. New medications developed by pharmaceutical companies and new behavioral treatment approaches should be subjected to clinical trials as quickly as possible so that new products reach the market promptly.[7] In this way, mental health policymakers would have reliable information on a range of newly available and effective services. These services would eventually replace status quo care with evidence-based treatment.
3. Coordinate the many federal agencies involved with mental health. Congress should work with the executive branch to bring coordination and focus to the efforts of the many federal agencies that oversee various components of mental health research, policy development, funding, laws, and programs.[8] If their efforts were cooperatively oriented toward the single goal of transforming the mental health care system through outcome-evidence-based care, much greater progress could be made. Instead, their uncoordinated efforts sometimes support and other times hinder reform. For instance, a NAMI study found that the National Institute for Mental Health (NIMH) dedicates only 36 percent of its research funds to support basic and clinical research on serious mental illness.[9]
State Reforms. At the same time, state governments should:
1. Close unneeded psychiatric facilities. Legislators in over-hospitalized states must summon the political will to close unneeded psychiatric facilities and retrain their staffs for community care. The savings realized from this effort should be reinvested in state-of-the-art community health care services. It is simply not economically feasible to maintain unneeded psychiatric hospitals and still finance community-based reforms. Moreover, the more effective and compassionate option is to provide services in the home community to the fullest extent possible. Although inpatient care will always be necessary for some persons, many states still have too many beds dedicated to psychiatric care. To avoid repeating past failures with deinstitutionalization, however, closing facilities must be done only in conjunction with the development of effective community services.
2. Fund innovative, new community services. State legislators should dedicate the savings realized by closing unneeded facilities, and appropriate additional funding as needed, to develop creative and accountable community care that provides whatever a person with serious mental illness needs in order to succeed in the home community. Many promising innovative community services are now available, and more are being developed. (See below for examples.)
Examples of Innovative Community Services
The Program for Assertive Community Treatment (PACT). Psychiatric hospital workers created PACT after seeing many of their patients return to the hospital soon after discharge due to 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 serious 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 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 treatment-resistant and frequently hospitalized.
New Medications. New medications are continually being developed for treating even the most severe mental illnesses. For some, these medications can have an almost miraculous effect, allowing those who have been hospitalized for years to return home and function well – thus decreasing the need for inpatient care. They may be more costly than typical medications, but they are much less costly than hospitalization. At their best, these medications provide a wonderful example of how evidence-based treatment can transform both the life of the consumer and the service system structure.
Telepsychiatry. 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 ÒclubhouseÓ staffed by professionals and a Òdrop-in centerÓ staffed by volunteers are treatment options that offer much-needed social support for persons with serious 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 serious mental illness. For that reason, the federal governmentÕs lead mental health service agency (SAMHSA) lists pursuing ÒCommunity and Faith-Based ApproachesÓ to treatment as one of their top priorities.[10] Faith-based programs provide a potentially huge and relatively untapped resource that communities can draw on as they move ahead with mental health reforms.
3. Make mental health providers more accountable. State legislators must hold all mental health providers accountable for the outcome of their care by requiring their agencies to institute comprehensive measurements of outcomes and to regularly collect and publish their findings. These measures should include the assessments of clinicians, consumers, families, employers, and schools, as appropriate, regarding both clinical outcomes (such as symptom reduction) and overall functioning (such as the ability to hold a job). The data would be aggregated by agency and contain no individual identifying information to protect privacy. It would be used to inform consumers and their families about the quality of the care provided and to guide policy decisions concerning contract renewal and funding allocations. Of course, the data would have to be interpreted carefully, taking into account any factors beyond the providerÕs control and screening out any attempts to ÒgameÓ the system.
4. Break the state monopoly on public mental health services. State legislators should develop a competitive public mental health system by directing their mental health agency to contract for hospital and community care in the open market. The agency should be directed to renew contracts based on carefully interpreted provider performance and efficiency—not on Òunits of service delivered,Ó a euphemism for the number of contacts made without regard to outcome. States also should consider creating a Medicaid voucher system that would allow consumers to select care from either the public or private sector. In this way, the mediocrity of care inherent in a monopolistic system would be replaced with the higher quality of care that results from market competition.
5. Promote parity insurance coverage for mental health. State legislators should mandate insurance companies in their states to recognize the critical importance of mental health care, and to offer policies with comparable coverage for mental health benefits. Employee-owned policies could facilitate this process by creating a market for such coverage. Families that already struggle with the effects of serious mental illness should not have to struggle financially as well due to poor coverage. There are some indications that this approach does not significantly increase overall health care costs (for example, Ohio found that offering such comparable coverage for state employees only minimally increased costs). However, it is important to note that providing increased coverage for mental health services without transforming the service system would likely benefit providers more than consumers.
6. Define Òmedical necessityÓ for private health plans. State legislators must recognize that the definition of Òmedical necessityÓ is often used in an arbitrary way by insurers to limit financial risk, especially regarding mental health coverage. Specifically, the term is often crafted to cover acute care only, rather than longer term care that would address underlying issues and vulnerabilities. Consequently, there is a need for state legislatures to review and standardize this critical term both for the sake of consumer protection and for achieving the goal of meaningful parity coverage.
There is one theme running throughout many of the principles and recommendations in this paper – the critical role of outcome data. Outcome data by definition gives the consumer a voice in their own care, as it consists primarily of consumer self-reports. It not only makes good sense programmatically to have results-oriented services, but there is also an ethical component that should be recognized. A person struggling with serious mental illness is vulnerable in many ways, not the least of which is being more-or-less at the mercy of their providers. Effective and compassionate providers can make a lifetime of difference by providing appropriate care at the right time and in the right way. But by the same token, inappropriate and ineffective care can lead to a lifetime of disaster – including suicide. With the stakes so high, shouldnÕt all providers be interested in knowing with certainty how well their clients are responding to care? How can we allow lives to be so deeply impacted without doing everything possible to document and ensure the desired positive outcome? Ethically, there is no excuse for not measuring clinical outcomes. Practically, there is no other way to guide the progress of mental health reform. It is past time for consumers and advocates to demand their due – outcome-evidence-based quality care.
Some may feel that outcome measurement is theoretically easy to endorse, but realistically hard to implement. Of course, there is some truth to that. Yet this author has found that implementation need not be the nightmare many might fear. The key is to use measures that are neither burdensome for the consumer who fills them out nor the provider who manages the results. For instance, there are valid and reliable measures available for outpatient care that can be completed in about 5-7 minutes. Those data are then available for fine-tuning the course of therapy, and can be aggregated for program review.
AmericaÕs mental health care system may be in a shambles, but there is a way to transform those shambles into an effective and compassionate service system that works. That way is through the principles and recommendations listed above, guided by outcome-evidence-based care. The principles and recommendations show the way, but only outcome data can tell us when we have arrived. Without such data, reform efforts are bound to fall far short of the Òfundamental transformationÓ called for by the Presidential Mental Health Commission.
With a Presidential Commission calling for the transformation of a broken mental health system, the time is ripe for real reform. Consumers and advocates would do well to seize the moment and unite behind a call for a new system of care based not on the status quo but on demonstrable results.
Timothy A. Kelly, Ph.D., a
licensed clinical psychologist, is an Associate Professor of Psychology at the
Fuller Graduate School of Psychology in Pasadena, CA. From 1994 to 1997, he was
the Commissioner of VirginiaÕs Department of Mental Health, Mental Retardation,
and Substance Abuse Services. Correspondence can be sent to Dr. Kelly at tkelly@fuller.edu. Portions of this paper
were drawn from one of the authorÕs prior papers entitled Principled Mental
Health System Reform.
1 Many of those with serious mental illness prefer to be referred to as either a ÒsurvivorÓ of the mental health system, a ÒconsumerÓ of mental health services, a Òperson with mental illness,Ó or a Òclient,Ó as opposed to a ÒpatientÓ or Òthe mentally ill.Ó Accordingly, the preferred terms will be used interchangeably throughout this paper.
2 PresidentÕs New Freedom Commission on Mental Health (2003). Final report to the President. A final report to the President as required by Executive Order 13263 of April 29, 2002.
[3] PresidentÕs New Freedom Commission on Mental Health (2002). Interim report to the President. An interim report to the President as required by Executive Order 13263 of April 29, 2002.
[4]U.S. Department of Health and Human Services, ÒMental Health: A Report of the Surgeon General,Ó 1999.
[5]The author has worked in the mental health field as a licensed psychologist, associate professor of psychology, and state mental health commissioner.
[6]See, for example, Kelly, T.A., (2003). Clinical outcome measurement: A call to action. Journal of Psychology and Christianity, 22, 264–268. See also Lambert, M.J., Hansen, N.B., & Finch, A.E. (2001). Patient-focused research: Using patient outcome data to enhance treatment effects. Journal of Consulting and Clinical Psychology, 69, 159-172.
[7]The Food and Drug Administration tests pharmaceuticals for safety and basic effectiveness, but the complex interaction of medications and behavioral therapies for various diagnoses falls to the NIMH.
[8] For example, National Institute of Mental Health, Substance Abuse and Mental Health Services Administration, National Institute of Alcohol and Alcohol Addiction, National Institute of Drug Addiction, Health Care Financing Administration, Office of Personnel Management, Social Security Administration, and the Departments of Housing and Urban Development, Justice, Labor, and Veterans Affairs.
[9]ÒThe Failure of the National Institute of Mental Health to Do Sufficient Research on Severe Mental Illness,Ó report issued by the Stanley Foundation Research Programs and the National Alliance for the Mentally Ill, 1999.
[10] See ÒSAMHSA Priorities: Programs & Principles Matrix,Ó on the web at www.samhsa.gov