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.
Federal and state policymakers must
establish a framework for comprehensive system reform that is based
on the following seven principles:
-
Treatment Quality--Improving mental
health care quality by measuring clinical outcomes and funding only
those treatments that work.
-
Treatment Access--Improving access
by encouraging public and private insurers to recognize the
importance of mental health care and encouraging comparable
physical and mental health coverage to consumers.
-
Consumer Choice--Increasing
treatment options by allowing mental health consumers to choose
among competing providers and treatments, and by instituting
employee insurance ownership and portability.
-
Personal Independence and
Productivity--Designing services to help persons with mental
illness find fulfillment through real work, a real home, and real
relationships to improve their independence and productivity in the
community.
-
Self- and Family
Participation--Allowing persons receiving care, and their
families, to be active participants in the development of policies
regarding services and in evaluating the effectiveness of their
providers and treatments.
-
Provider Accountability--Replacing
the current monopolistic public mental health system with
open-market competition among providers, with contract renewal
dependent upon performance, to improve the quality of care.
- Government Responsibility--Ensuring
that the quality of life for persons with mental illness
dramatically improves as a direct result of their policies.
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.
WHAT'S WRONG WITH MENTAL HEALTH
POLICY
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.
What Went Wrong?
The
system did not achieve its intended result for several reasons:
-
Deinstitutionalization failed.
Despite the availability of anti-psychotic medications and the
noble desire to treat people in their home communities, homeless
persons with severe mental illness have become a sadly common
feature of the American landscape. According to Dr. E. Fuller
Torrey, an expert on schizophrenia, "hundreds of thousands of
vulnerable Americans are eking out a pitiful existence on city
streets . . . because of the misguided efforts of civil rights
advocates to keep the severely ill out of hospitals and out of
treatment." Moreover, state laws, some driven by challenges from
the American Civil Liberties Union (ACLU), "prevent treating
individuals until they become dangerous." In other
words, current policies make it all too easy for persons with
severe mental illness to receive little or no treatment after they
have been discharged from a psychiatric hospital. Often, effective
treatment is not available; sometimes the person may not realize
the need for treatment and will refuse care. Regardless of the
reason, however, the result is untreated mental illness.
-
Legal actions misdirect
"improvements." The U.S. Department of Justice (DOJ) has
brought costly legal action against many state mental health
agencies for failing to place hospitalized patients in the
community when appropriate. Additionally, a Supreme Court decision
(Olmstead v. L.C.) was handed down on June 22, 1999, which ruled
that unnecessary hospitalization of persons with mental illness
constitutes a violation of their rights under the Americans With
Disabilities Act. States are, therefore, becoming ever more
vulnerable to legal actions, especially if effective and
accountable community-based reforms are not forthcoming. Many
states respond to this threat by attempting to expand and reform
community care, but often this is done without the benefit of
tested and comprehensive policy recommendations to guide them. For
example, community funds may be increased to address "unmet
needs," but without a
requirement that treatment effectiveness be evaluated. As a result,
more people receive costly and ineffective services, but the need
for better clinical outcomes remains unaddressed.
- Mental health care costs continue to
increase. Both private and public insurers (such as Medicaid)
are failing in their attempts to hold down mental health care
costs. Demand for services is rising, and debate rages as to
whether additional categories of mental illness--such as marriage
problems and bereavement--should be covered. Since the diagnosis
and treatment of mental illness is still far from an exact science,
insurers find that it is difficult to predict policy effects on
their insured. For example, managed care technologies have been
applied with the expectation that a significant one-time savings
will be achieved when moving from traditional fee-for-service to a
managed network of providers, as well as ongoing savings realized
from increased efficiencies; this has been the pattern with
physical health care. But results to date suggest that, in the
arena of mental health, neither benefit can be counted on. As one
case in point, Tennessee found it to be extremely difficult to
develop a successful managed mental health care system for Medicaid
recipients (in its system known as TennCare) and has had to
experiment with several management models. The reason for the poor
results may be that most managed care savings are generated by
reducing overuse of hospital beds, specialist care, and emergency
care--none of which can be accomplished without comprehensive
mental health system reform.
Response to Policy Failures
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:
-
The 1996 Mental Health Parity Act requires
insurance companies to offer the same lifetime and annual dollar
limits for physical and mental services. Congress is now
considering two bills (S. 796 and H.R. 2593) to broaden the parity
legislation. The main difference between these bills involves the
definition of who would be considered eligible for coverage. The
Senate bill would apply only to severe mental illness; the House
bill is much broader.
-
The Work Incentives Improvement Act of
1999 (H.R. 1180), among other things, provides healthcare and other
supports for persons with mental illness who attempt to reenter the
job market. The bill passed the Senate and House last fall, and it
was signed by the President on December 17, 1999.
-
In November 1999, Congress appointed
conferees for the managed care Patient's Bill of Rights Plus Act
(H.R. 2990), which would establish such basic "rights" as the
ability to use "off-formulary" medications. The President threatens
to veto the bill for not going far enough.
-
The need to limit a psychiatric hospital's
use of seclusion and restraints for hospitalized persons with
mental illness is being considered in several bills (S. 736, S.
750, and H.R. 1313).
-
A bill under consideration in the Senate
(S. 976) would improve federally funded youth drug and mental
health services. It calls for focusing on community-based services
and improving effectiveness, flexibility, and accountability.
-
The House is considering a bill (H.R.
2576) that would establish a new substance abuse agency by
consolidating and reorganizing several of the overlapping federal
agencies working in that area.
-
The Youth Suicide and Violence Research
Act (S. 1555) would increase funding for research to study the
increasingly common and tragic incidents of youth suicide and
violence.
- The Senior's Mental Health Access
Improvement Act (H.R. 2945) would include marriage and family
therapy in Medicare coverage.
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.
SEVEN PRINCIPLES FOR REFORM
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.
WHAT TO DO
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.
Federal Reforms.
Specifically, the federal government should:
-
Block grant Medicaid to the states.
Medicaid restrictions should be removed in order to give states the
flexibility they need to develop and fund new mental health system
reforms. Currently, Medicaid funds come back to the states with
strings attached that tend to stifle innovation and promote the
current rigid service delivery system. For example, most state
Medicaid plans cover acute care hospitalization for persons with
schizophrenia, but not assertive community care that would allow
them to live successfully at home. As a result,
patients who could have gone home remain hospitalized longer than
needed. They have coverage for expensive inpatient services, but
not for more effective and less costly community care. States should be
trusted to spend their own money in a more effective and
compassionate manner.
-
Encourage greater creativity with any
federal funds that are not block granted to the states. Federal
funds should be made available to the states for pilot programs to
test creative new treatment options, such as telepsychiatry and
faith-based treatment programs. Seed money should be provided with
the stipulation that effectiveness measures must be built into all
pilot programs, and that demonstrated efficacy using standardized
measures is required for continued funding. Since that which is
measured tends to improve, the ongoing measurement of clinical
outcomes will lead to continual improvement in the quality of
mental health care in old and new services alike.
-
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 federal agencies that oversee various components of mental
health research, policy development, funding, laws, and programs.
(See sidebar p. 9.) If their efforts were cooperatively oriented
toward the single goal of achieving principled mental health system
reform, much greater progress would be made. Instead, their
uncoordinated efforts sometimes support and other times hinder
reform. For instance, a recent report found that the National
Institute for Mental Health (NIMH) dedicates only 36 percent of its
research funds to support basic and clinical research on severe
mental illness. An interagency
task force, or perhaps a short-term commission, could be created to
recommend how to overcome this fragmentation of mental health
agencies and how to coordinate their policies in the future.
-
Develop standardized measures of
performance and outcomes. Congress should require the NIMH to
develop a scientifically derived catalogue of standardized
performance and outcome measures that are appropriate for various
aspects of mental health service delivery and treatment. 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. However, a set of
broadly supported, standardized mental health outcome measures
needs to be developed and universally applied. The Agency for
Health Care Planning and Research (AHCPR) has developed similar
outcome measurement tools for other medical treatments, including
some mental health treatments. The NIMH, perhaps in conjunction
with the AHCPR, is well-positioned to accomplish this task and to
offer (not mandate) the product developed to the states. States
interested in mental health reforms will want to adopt these
measures in order to have access to valid data that will allow them
to evaluate progress.
-
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. In this way, mental health
policymakers would have reliable information on a range of
available and effective services from which to design comprehensive
reforms. Over time, this approach would lead to proven mental
health treatments, which would be a welcome replacement for the
status quo.
-
Define severe and persistent mental
illness. Congress should require the NIMH to set the
standard for a diagnosis of severe and persistent mental illness,
drawing on the work of the National Advisory Mental Health Council.
Currently, severe diagnoses such as schizophrenia, bipolar
disorder, major depression, and obsessive-compulsive disorder
compete with far less threatening diagnoses for coverage. Sound
research would enable the NIMH to determine where the line should
be drawn between severe and persistent mental illness and other
diagnoses so that limited resources could be targeted, on a
priority basis, to help those with severe needs. Of course, less
severe needs are also important and worthy of attention, but they
should be classified separately. Some, such as bereavement and
marital problems, should perhaps be classified as "life problems"
and thus not draw down available coverage for persons with severe
and persistent mental illness. Otherwise, mental health services
will be spread too thinly over an
ever-expanding list of social needs. Reforming mental health care
can dramatically improve the quality of life for persons with
severe mental illness, but it cannot solve all of life's
problems.
- Change the tax structure for
insurance. Congress should enact refundable tax credits for
employee-owned health coverage, as well as for supplemental and
portable health benefits that employees take with them when they
change jobs. This would lead to more flexible and responsive
insurance policies that are owned and controlled by consumers
rather than their employers. It would lead to increased coverage
and greater choice for consumers, and would make it easier for
families that desire policies with comprehensive mental health
coverage. Thus, the market would accomplish what government is
often tempted to mandate--better coverage for more people. This
approach could apply to Medicaid services as well; Medicaid
recipients could choose private plans with the premiums covered by
Medicaid vouchers, if they wished. More choice leads to more
competition among providers, which in turn improves the quality of
care.
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Some of the Federal Agencies that
Deal with Mental Health
National Institute on Drug Abuse
Substance Abuse and Mental Health Services Administration
National Institute of Alcohol and Alcohol Addiction
National Institute of Mental Health
Office of Personnel and Management
Social Security Administration
Agency for Health Care Policy and Research
National Institute on Aging
National Institute of Neurological Disorders and Stroke
Department of Housing and Urban Development
Department of Justice
Department of Labor
Department of Veterans Affairs
Health Care Financing Administration
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State Reforms.
At the same time, state governments should:
-
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.
-
Fund new community services. State
legislators should dedicate the savings they realize by closing
unneeded facilities, and appropriate additional funding as needed,
to develop creative and accountable community care that provides
whatever a person with severe mental illness needs to succeed in
the home community. Many promising innovative community services
are now available, and more are being developed. (See textbox,
"Examples of Innovative Community Services," for examples.)
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.