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PRINCIPLED MENTAL HEALTH SYSTEM REFORM
Timothy A. Kelly, Ph.D.
George Mason University
January, 2000
EXECUTIVE SUMMARY
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.
The steps the federal government should take to implement this
system are:
- Block grant
Medicaid to the states and remove Medicaid
restrictions so states have the flexibility they need to pilot new
programs and fund mental health system reforms.
- Encourage
greater creativity with federal funds that are
not block granted and reward pilot programs that lead to
improvements in the quality of care.
- Coordinate
the many federal agencies that are involved
with mental health to overcome their fragmentation and to refocus
them on system reform.
- Develop
standardized measures of performance and outcomes
for providers so states can develop more effective forms of
treatment based on actual results.
- Increase
funding for developing new mental health
treatments, and for testing treatment effectiveness with
standardized measures, so that policymakers will have scientific
data on which to base their decisions.
- Define
severe and persistent mental illness so that
resources can be focused on those with severe needs on a priority
basis.
- Change
the tax structure for health insurance to allow tax
deductions for the cost of employee-owned portable insurance in
order to maximize coverage options and choice.
At the same time, the states should:
- Close
unneeded psychiatric facilities and retrain staff
for community service.
- Fund
new community services with the savings achieved from
facility closures.
- Hold
mental health providers accountable using
standardized outcome measures.
- Break
the state monopoly on public mental health services.
- Evaluate
prevention and early intervention programs and
offer their services to parents, schools, families, providers,
hospitals, and the community.
- Promote
comparable insurance coverage for physical and
mental health benefits.
- Establish
safeguarded outpatient commitment as an
alternative to homelessness or hospitalization.
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.
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 requiring public and
private insurers to recognize the importance of mental health care
and offer 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) would,
among other things, provide 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 promote the current rigid service delivery
system. For example, until recently Medicaid covered
hospitalization for persons with schizophrenia, but not assertive
community care that would allow them to live successfully at home.
As a result, many patients who could have gone home remain
hospitalized at great expense. 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.) 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.
[START SIDEBAR #1]
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
[
END SIDEBAR #1]
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 sidebar for examples.)
[START SIDEBAR #2]
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 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.
[END SIDEBAR #2]
- 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 collect and publish
their findings regularly. These measures should include the
assessments of clinicians, consumers, families, employers, and
schools, as appropriate, regarding both clinical outcomes (such as
symptom reduction) and lifestyle outcomes (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 provider’s control and screening out any
attempts to "game" the system.
- Break the state monopoly on public mental health services.
State legislators should help develop a competitive public mental
health system by directing their mental health agency to contract
for facility 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 "units of
service delivered," 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.
- Evaluate prevention and early intervention programs.
State
legislators should study the extent to which their mental health
agency provides useful information and creative referral options
to schools, healthcare professionals, public safety officials,
faith-based organizations, and communities. Agencies should be
required to demonstrate that early intervention services are
available and effective. Accurately diagnosing a very young child
with autism and offering the family support for home care, for
example, would meet the family’s needs and may well avoid
hospitalization later on. But it is not enough simply to establish
that prevention and early intervention programs exist. Program
effectiveness must be continually monitored to document the extent
to which it is helping and to guide future decisions on funding
and program development.
- Promote comparable insurance coverage for mental health.
State legislators should motivate 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 would facilitate this process by
creating a market for such coverage. After all, families that
already struggle with the effects of severe 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 comprehensively reforming the service
system would likely benefit providers more than consumers.
- Establish outpatient commitment.
States should update
current law or enact new laws that establish safeguarded
outpatient commitment as a viable alternative to the
re-hospitalization- homelessness cycle. However, an adequate
network of effective community supports and services must first be
put in place for outpatient commitment to be successful. With such
services in place, outpatient community commitment offers
protection for people who would otherwise be at high risk for
homelessness. It establishes a legal framework wherein persons
with severe and persistent mental illness may be discharged to the
home community with the imperative to follow treatment. If they do
not, their doctor has the option of re-hospitalizing them
before they become homeless or are otherwise at risk of
harm. Since this would limit a person’s right to refuse treatment,
that right must be safeguarded with an effective review and
appeals process. With such safeguards and adequate community
services in place, outpatient commitment would help break the
vicious circle of hospitalization and homelessness that often
results from treatment disruption.
Improvements and Opportunities
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:
- Participation in treatment choices
. They could expect to
have a voice in selecting the provider and shaping actual
treatment (such as frequency of therapy, choice of medication, or
faith-based versus traditional care).
- Participation in treatment outcome measurement.
They could
expect to report on how effective or ineffective the specific
treatment was.
- Participation in service and provider evaluation
. They
could expect to be asked to rate the performance of the provider
or service organization.
- Participation in policy deliberation
. They could expect
reasonable representation at the policy development table in both
the public and private sector.
- Real jobs in the home community
. They could expect
treatments, services, and supports which are designed to enable
the persons treated to find and hold real jobs in their home
community.
CONCLUSION
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.
With more than 220,000 members,
NAMI is the nation's leading grassroots advocacy organization
solely dedicated to improving the lives of persons with severe
mental illnesses including schizophrenia, bipolar disorder
(manic-depressive illness), major depression,
obsessive-compulsive disorder, and severe anxiety disorders.
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