The Well Being of Our Nation:
An Inter-Generational Vision
of Effective Mental Health Services and Supports
September 16, 2002
National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
202-272-2004 Voice
202-272-2074 TTY
202-272-2022 Fax
This report is also available in alternative formats
and on NCD's award-winning Web site (www.ncd.gov).
The views contained in the report do not necessarily
represent those of the Administration as this and all NCD documents
are not subject to the A-19 Executive Branch review process.
National Council on Disability Members and Staff
Members
Lex Frieden, Chairperson
Kate Pew Wolters, First Vice Chairperson
Hughey Walker, Second Vice Chairperson
Yerker Andersson, Ph.D.
Dave N. Brown
Robert R. Davila, Ph.D.
Young Woo Kang, Ph.D.
Kathleen Martinez
Audrey McCrimon
Carol Hughes Novak
Bonnie O'Day, Ph.D.
Patricia Pound
Lilliam Rangel-Diaz
Staff
Ethel D. Briggs, Executive Director
Jeffrey T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Director of Communications
Allan W. Holland, Chief Financial Officer
Julie H. Carroll, Attorney Advisor
Joan M. Durocher, Attorney Advisor
Martin Gould, Ed.D., Senior Research Specialist
Gerrie Drake Hawkins, Ph.D., Program Specialist
Pamela O'Leary, Interpreter
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Automation Clerk
Acknowledgment
The policy research and analysis was conducted, and
a report to the National Council on Disability (NCD) prepared, through
a contract with Michael Allen and the Bazelon Center for Mental
Health Law. Michael Allen is a lawyer, a policy researcher, and
a seasoned writer in the area of mental health services.
Contents
Executive Summary
Chapter 1: Introduction
Chapter 2: How Did We Get Here?
Chapter 3: Impact on Children
and Youth
Chapter 4: Impact on Adults
Chapter 5: Impact on Seniors
Chapter 6: Fulfilling the Promise:
Concrete Steps Toward a New Vision
Chapter 7: An Inter-Generational
Vision for Effective Mental Health Services and Supports
Appendix
Mission of the National Council
on Disability
Executive
Summary
At a time when more is known about mental illnesses
than at any other time in history and just three years after the
U.S. Supreme Court held that unnecessary institutionalization violates
the Americans with Disabilities Act, public mental health systems
find themselves in crisis, unable to provide even the most basic
mental health services and supports to help people with psychiatric
disabilities become full members of the communities in which they
live.
This report does not aim to be a comprehensive review
of all that is known about public mental health and its shortcomings.
That undertaking has been begun by the U.S. Surgeon General, in
the massive 1999 report entitled Mental
Health: A Report of the Surgeon General, and will be carried
on with President Bush's New Freedom Commission on Mental Health,
which held its first public hearings in July 2002. Rather, this
report examines some of the root causes of the crisis in mental
health, and seeks to "connect the dots" concerning the dysfunction
of a number of public systems that are charged with providing mental
health services and supports for children, youth, adults and seniors
who have been diagnosed with mental illnesses.
One of the most significant findings of this report
is that children and youth who experience dysfunction at the hands
of mental health and educational systems are much more likely to
become dependent on failing systems that are supposed to serve adults.
In parallel fashion, adults whose mental health service and support
needs are not fulfilled are very likely to become seniors who are
dependent on failing public systems of care. In this fashion, hundreds
of thousands of children, youth, adults and seniors experience poor
services and poor life outcomes, literally from cradle to grave.
There is no single antidote for the current dysfunction
of the public mental health system. Clearly, visionary leadership,
adequate funding and expansion of proven models (including consumer-directed
programs) are essential ingredients. More than these, however, there
needs to be a dramatic shift in aspirations for people with psychiatric
disabilities.
Public mental health systems must be driven by a value
system that sees recovery as achievable and desirable for every
person who has experienced mental illness. Systems also must commit
to serving the whole person, and not merely the most obvious symptoms.
In other words, mental health systems will have to develop the expertise
to deliver not just medication and counseling, but housing, transportation
and employment supports as well.
There are proven models of success throughout the
country, but entrenched forces and stale thinking have prevented
them from "going to scale" to serve more people with psychiatric
disabilities. Some such models are referenced throughout the report,
and Chapter 6 provides a menu of concrete actions to bring about
a new vision of public mental health services and supports.
Chapter
1
Introduction
For decades, state mental health systems have been
burdened with ineffective service-delivery programs and stagnant
bureaucracies. Their operations have become rote, spurred to change
only by crises. Combined with ever-increasing fiscal pressures,
this situation has precluded innovation and kept most systems from
incorporating the new and more effective interventions developed
in recent years. As a result, state mental health systems have all
but disintegrated, falling ever farther from the ideal of voluntary,
accessible and effective services and supports that promote meaningful
community membership.
As large state psychiatric hospitals have been downsized
or closed over the past 30 years, people with psychiatric disabilities,
advocates, providers and policy makers have learned that recovery
from mental illness requires much more than traditional "mental
health services." Rather, recovery may require access to housing,
transportation, employment and peer supports and, for certain individuals,
these may be much more important than medication, therapy and case
management. Yet, with rare exceptions,1
mental health systems have been slow to acknowledge and respond
to these needs with meaningful, naturalistic supports. Throughout
this report, reference will be made to "mental health services and
supports" to highlight the critical importance of each in providing
the tools that a person with a psychiatric disability may need to
recover from symptoms of mental illness, to overcome isolation and
to gain (or regain) economic self-sufficiency.
A growing number of advocates, policymakers and members
of the media have begun to realize that the public mental health
system (2)
in most states is highly dysfunctional, and rations
care in a manner that requires people with serious mental illnesses
to "hit bottom" before receiving the services and supports they
need to live successfully in the community
(3)
. The depressing reality is that this approach is
shared by systems serving children, youth, adults and seniors, creating
dependency and perpetuating failure, sometimes literally from cradle
to grave.
In fact, the use of the term "mental health system"
is, itself, problematic. One of the primary problems is that states
do not have a single system of mental health care, but a number
of patchwork systems that are called upon to provide such care,
often without a guiding vision of how to do so most effectively
and frequently without the funding to actually deliver services
and support to every eligible person. To be diagnosed with a mental
illness (or with "severe emotional distress," the term applied to
children and youth under the age of 18) is to be consigned to one
dysfunctional system after another. In fact, the evidence shows
that once the label has been applied and a person has been failed
by one public system, chances are high that he or she will frequently
be failed by other systems as well.
Throughout the 1970s, 1980s, and 1990s, whether in
times of budgetary deficit or surplus, states failed to adequately
fund their mental health systems. But the pressing needs of people
with mental illnesses did not just disappear. They were forced underground
or, more accurately, they were forced onto other public and private
systems that were not designed to provide mental health services
and supports.
In many communities, jails and prisons become the
safety nets and the largest providers of mental health services.
Homeless shelters and nursing homes have become housing of last
resort for people with mental illnesses. Hospital emergency rooms
have provided crisis-oriented care for a few days at a time before
sending people with mental illnesses back into a community setting
where they are destined to fail because of a lack of mental health
services and supports.
When children and youth with severe emotional disturbance
cannot get the family-based care and supports they need, they often
end up in foster care or juvenile justice, and may be consigned
to institutional settings where they are further cut off from their
natural support systems. Seniors with unmet mental health needs
are often relegated to nursing homes or unregulated "board and care"
homes where they are left to fend for themselves.
While they do not appear on the budget line for the
state mental health agency, the costs of care for people with mental
illnesses are borne by these other systems (and by taxpayers). Typically,
these costs are many times higher than what it would cost to provide
modest, preventive services and supports, such as counseling, peer
support, respite care, supportive housing and job training.
Beyond funding, one of the most significant barriers
to access is that, outside of psychiatric hospitals, the public
mental health system is only "open" from 9 a.m. to 5 p.m. By contrast,
law enforcement, jails and prisons, emergency rooms, homeless shelters
and other systems are "open" 24/7 and, as a consequence, have ended
up taking a larger share of people in crisis.
Through neglect or underfunding, the public mental
health system in many states has effectively closed its doors, through
the use of waiting lists, priorities for service, and disqualification
of people who are thought to be "hard to serve" or "treatment resistant."
As a consequence, adults with mental illnesses have increasingly
found themselves caught up with law enforcement, the judicial system
and the correctional system. (4)
Children and youth with severe emotional disturbance
are also shunted from system to system, without adequate care from
any of them. Even where they have a legal entitlement to services-such
as Medicaid's Early Periodic Screening, Diagnosis and Treatment
(EPSDT) program or the right to a "free and appropriate public education"
under the Individuals with Disabilities Education Act (IDEA)--enforcement
of these entitlements is problematic because of a shortage of knowledgeable
attorneys willing to take on such claims.
When families can't enforce their children's right
to services and supports designed to keep them at home (or when
they run out of private insurance benefits), they are often forced
to relinquish custody to the state, which then provides fully-funded
Medicaid services to secure services very similar to those that
had been denied to families, or had been difficult for families
to access.
As a result of all these shortcomings, people with
psychiatric disabilities, family members, advocates and members
of the general public have extremely low expectations of the mental
health system, and even these are often frustrated.
This paper is designed to provide a broad overview
of the current state of public systems charged with providing mental
health services and supports to children, youth, adults and seniors
and to identify, across these age groups, common trends that have
led to the failure of these public systems. It will do so by examining
the following themes:
- Mental health systems are focused on crisis and
on those "most in need," requiring that people with psychiatric
disabilities "hit bottom" before getting the services and supports
they need;
- Missed opportunities for prevention: The failure
of community-based and preventive systems leads to greater reliance
on isolating institutions and segregated "residential placements";
- Despite clear eligibility, many people are denied
mental health services and supports, or find them entirely inaccessible;
and
- The failure to provide timely, voluntary and effective
mental health services and supports leads to tragic consequences
for people with psychiatric disabilities and for society at large.
Chapter
2
How Did We Get Here?
Since the early 1960s, national policy on serving
people with serious mental illnesses has focused on reducing costly
and often neglectful institutional care and relying, instead, on
providing services more humanely in the community. This movement
acquired the unwieldy title of "deinstitutionalization." One impetus
in the early 1970s was the landmark decision in the case of Wyatt
v. Stickney, (5)
which established a constitutional right for people
confined in state mental institutions to receive treatment for the
condition that led to their confinement, rather than being merely
warehoused.
In the landmark Olmstead decision (Olmstead
v. L.C., 119 S.Ct. 2176, 2188 (1999)), which reaffirmed the ADA's
integration mandate, the Supreme Court stated that "Unjustified
segregation in an institution...is properly regarded as discrimination
based on disability." Moreover, in her majority opinion, Judge
Ruth Bader-Ginsburg observed that: (a) "institutional placement
of persons who can handle and benefit from community settings perpetuates
unwarranted assumptions that persons so isolated are incapable or
unworthy of participating in community life," and (b) "confinement
in an institution severely diminishes the everyday life activities
of individuals, including family relations, social contacts, work
options, economic independence, educational advancement, and cultural
enrichment." The decision makes clear that the ingrained neglect
of public systems constitutes a violation of civil rights. It compels
states to consider how their systems of care perpetuate needless
segregation and its harmful effects.
Despite many court orders and legislative pronouncements,
however, the ambitions of deinstitutionalization have yet to be
realized. There is no comprehensive community-based service systems
that were deemed necessary for people with psychiatric disabilities
to thrive as they returned home. Lacking access to the services
and supports that promote self-sufficiency, adults with serious
mental illnesses such as schizophrenia, bipolar disorder and major
depression, and children and youth with emotional disturbance remain
vulnerable to homelessness, frequent re-hospitalizations, unemployment
and involvement with criminal justice systems.
Access to Services Through Public Programs
People who either do not have private health insurance
or exhaust their coverage must turn to public-sector mental health
programs. Unfortunately, shrinking public-sector resources means
that most of the uninsured are unable to get the services and supports
they need. They are given what is available-often no more than a
bimonthly appointment with a psychiatrist and a supply of medication
meant to suppress symptoms. In this fashion most people with psychiatric
disabilities who are poor are merely being "warehoused" in the community
rather than being helped toward recovery and independence.
Federal Medicaid law requires that all covered children
and youth have access to all medically necessary services, through
the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT)
mandate. But many states do not adequately implement EPSDT, nor
do they require their managed care contractors to do so.
(6)
Medicaid law prohibits reimbursement to psychiatric
hospitals for non-elderly adults. It does, however, permit states
to cover a full array of comprehensive community-based services.
Yet many states have failed to use these options, leaving some,
particularly adults with serious mental illness, without access
to the array of effective services detailed in the Surgeon General's
report, such as targeted case management and psychiatric rehabilitation,
let alone help with housing, transportation and employment.
Children, youth and adults with the most serious forms
of mental disability are victims of neglectful public systems that
preclude their access to the resources necessary for stable lives
and meaningful participation in the community. They are further
victimized when the consequences of unmet needs are punitive--for
example, when they are arrested for behavior, such as sleeping on
the street, that is an outcome of their lack of access to housing
and mental health services.
Federal Mental Health Block Grant.
The Federal Government, through the Supreme Court's ruling in
Olmstead has clarified the duties of states to provide appropriate
community services in lieu of institutional care for people with
mental illness. It would be appropriate, at this time, for the Federal
Government itself to increase its financial contribution to spending
on community mental health services through the major mental health
services program, the Community Mental Health Services Block Grant.
(7)
Over the past 18 years, federal appropriations for
the mental health block grant have fallen in real terms. In 1980,
community mental health centers received $293 million in annual
federal appropriations--a small amount in overall mental health
spending, but nonetheless an important proportion of the resources
available for community care. However, even that modest amount looks
significant today. In 1981, when the community mental health law
was repealed and the mental health block grant was enacted to replace
it, spending was reduced 14 percent. Following this substantial
cut, the block grant has continued to drastically lose ground to
inflation, as the graph below illustrates.
(Source: Bazelon Center for Mental Health Law, Under
Court Order: What the Community Integration Mandate Means for People
with Mental Illnesses)
The Federal Government could, and should, do more
to assist states in meeting the needs of individuals who are unnecessarily
institutionalized or at risk of unnecessary institutionalization.
In January 1999, the administration requested that Congress increase
appropriations for the mental health block grant by $70 million.
Such an increase, while helpful, is far short of the level needed
to restore lost spending power for the block grant. Advocates should
urge the administration and the Congress to increase federal appropriations
for the block grant to $1 billion. This would raise spending on
mental health to a level more commensurate with spending under the
substance abuse block grant ($1.585 billion).
Inadequate federal funding is exacerbating a crisis
in community mental health at the state and local levels, where
budget shortfalls are leading to drastic cuts in vital mental health
programs. The landmark report on mental health issued by the Surgeon
General of the United States in December 1999 affirmed that the
technology exists to provide effective treatment--even to people
with serious mental illnesses. The problem is that these treatments
are simply not accessible to all who could benefit from them.
State Appropriations
Community mental health services are generally no
more expensive than institutional care. However, to shift a system
from over-reliance on institutions to one that provides more appropriate
and more effective community services and supports requires an investment
in the community. Start-up costs, along with the need to ensure
that people continue to receive care while new community options
come on line, have hampered states' ability to ensure that resources
follow individuals into the community. Until community services
are up and running, Medicaid and other sources of reimbursement
cannot be tapped. Accordingly, states may need to make a direct
appropriation of their general funds for this purpose.
But far from meeting these obligations, states have
been reducing spending on mental health services over past years.
For example:
- State only appropriations for mental health
services are significantly lower today (adjusted for inflation
and growth in population) than they were in 1955, when most people
with mental illness were warehoused in state institutions.
(8)
Given that institutions provided little in the
way of real treatment at that time, it would be expected that
state expenditures for mental health would have grown, as new
and effective approaches to care and supports were developed.
- State appropriations for mental health have lost
ground, by 7 percent, between 1990 and 1997. This is true for
nearly every state, as shown in the comparison of states adjusted
for inflation in the table below.
- State appropriations for mental health have been
falling in relation to other state spending. Spending on mental
health has grown more slowly than (1) total state-government spending,
(2) state-government spending on health and welfare and (3) spending
on corrections. (9) During the
1990s, state mental health spending grew by 33 percent, but total
state spending grew 56 percent, spending on health and welfare
services grew by 50 percent and spending on corrections, by 68
percent.
The overall change in real purchasing power for state
mental health appropriations between 1955 and 1997 is shown in the
chart below. While other funds supplement these state expenditures
(for example, the federal Medicaid match and the federal mental
health block grant), these falling numbers represent a reduction
of states' own efforts over the years.
(Source: Bazelon Center for Mental Health Law, Under
Court Order: What the Community Integration Mandate Means for People
with Mental Illnesses)
Accordingly, it would hardly be a fundamental alteration
in programming for states to increase their appropriations for community
mental health services in order to comply with the Supreme Court's
ruling in Olmstead. Investment in community services has
the potential to bring about long-term savings by enhancing states'
ability to tap into federal dollars, making increased investment
in developing community services and supports even more important.
Chapter
3
Impact on Children and Youth
Crisis Focus
As is well documented elsewhere,
(10) children with emotional disturbance experience significant
gaps between the systems of care designed to serve their needs and
to support them with their families and in the community. Due to
the stresses of poverty, children and youth from low-income families
are disproportionately represented among young people diagnosed
with emotional disturbance. While this labeling theoretically entitles
children to a wide range of services and supports, these are often
not delivered. In addition, the labeling itself may serve to reinforce
a view of these children as dysfunctional, and relegate them to
segregated settings. Public policy must seek to reduce this stigma
while delivering supports and services (including naturalistic supports,
such as mentoring, after-school programs and improved housing).
The Substance Abuse and Mental Health Services Administration
(SAMHSA) estimates that 20 percent of all children from birth to
17 years of age suffer from a diagnosable mental, emotional or behavioral
illness. (11)
According to SAMHSA, approximately 7 million children
had a diagnosable mental disorder in 1997. Between children and
adolescents aged 9 to 17, SAMHSA estimates 2.1-4.1 million (five
to 13 percent) have a mental or emotional disorder that seriously
impairs their functioning in day-to-day activities.
America's youth is the human resource capital of America's
future. The value of these human resources is incalculable. We cannot
define or put a value on the loss incurred when today's children
and youth with emotional disturbance are damaged in their formative
years by systems' failures to provide needed mental health care
and/or special educational services. For example, children who lack
these services often cannot utilize the free and appropriate public
education to which they are entitled under federal law. Children
with unrecognized or untreated emotional disabilities cannot learn
adequately at school or benefit readily from the kinds of healthy
peer and family relationships that are essential to becoming healthy
and productive adults.
Many young people with emotional disturbance are already
involved in the juvenile justice system. (12)
Rates of emotional disturbance among youth in the juvenile justice
system have been estimated at 60-70 percent. A significant percentage
of the 100,000 youth detained in correctional facilities each year
suffers from serious mental disabilities and a commensurately large
percentage suffer from addictive disorders. Seventy-five percent
of the youth in the juvenile system have conduct disorders and more
than half have co-occurring disabilities.
According to a 1999 report by Substance Abuse and
Mental Health Services Administration, when compared with adolescents
having fewer or less serious behavioral problems, adolescents with
behavioral problems such as stealing, physical aggression, or running
away from home were seven times more likely to be dependent on alcohol
or illicit drugs.
While major mental illness, such as schizophrenia,
is often evident only when the individual reaches the late teens
or early twenties, there is little doubt that many other disabilities
found among the adult prison population surfaced at a much younger
age--and went untreated.
The failure to identify (and treat) emotional disturbances
is also associated with the growing problem of teen suicides and/or
suicide attempts. If properly implemented, Medicaid's EPSDT screening
program should assist parents of youth with emotional disturbance
and school personnel in identifying their disabilities, providing
the appropriate treatment, and preventing suicide.
The lack of home- and community-based services has
still other negative consequences. The lack accounts for unnecessary
hospitalization of children and youth with emotional disturbance.
It also contributes to readmission. For lack of services that might
ease the transition from hospital to home, including respite services
for their families, these children cycle back and forth between
hospital and the community without ever achieving stability. In
turn, unnecessary hospitalization usurps the limited resources of
state mental health budgets, thus obstructing the provision of services
that might have prevented institutionalization and perpetuating
an unproductive cycle.
If all aspects of the system--from assessment to treatment--took
into account the long-term needs of children, rather than episodic
or crisis occurrence, children's needs would be described in terms
of their underlying issues and in the context of their family and
living situation instead of mere documentation of short-term behavior
or services available. For some children, the system must be prepared
to make a commitment to serve the child for their entire childhood,
with easy entry and re-entry into the system. Outcome measures should
reflect long-term goals--such as school attendance, living at home
with family or independently, and working at a job.
Missed Opportunities for Prevention
Poor treatment by the system as a child or youth increases
the likelihood of encountering other dysfunctional systems as an
adult. Children with serious emotional disturbance have the civil
right to receive services in the most integrated setting appropriate
to their needs. (13) They further
have the human right to be raised in their families and communities,
with their individual needs guiding the service array provided.
These civil and human rights are embodied in the Americans with
Disabilities Act (ADA). (14)
The failure to identify and treat mental disabilities
between children and youth has serious consequences, including school
failure, involvement with the justice system and other tragic outcomes.
As outlined in the Adult chapter, below, adults with mental illnesses
who find themselves in the criminal justice system are significantly
more likely to have grown up in foster care, under custody of a
public agency or in an institution.
There are large discrepancies between the mental health
needs of children and youth and the services they actually receive.
A recent study found that only one in five children with emotional
disturbance used any mental health specialty services, and a majority
received no mental health services at all. This is consistent with
an earlier finding by the Office of Technology Assessment (OTA)
which estimated that only 30 percent of the 7.5 million children
who needed mental health treatment received it. However, children
with serious emotional disturbance often do not receive the services
to which they are entitled under the Individuals with Disabilities
Education Act (IDEA).
Individuals with Disabilities
Education Act: IDEA has long been the primary vehicle
for securing mental health services and supports for children and
youth with mental, emotional or behavioral disabilities. The Act's
basic tenet is that, until age 21, children and youth are entitled
to "a free and appropriate public education." Under IDEA, children
with emotional or behavioral disabilities that interfere with their
ability to learn are entitled to special education services, including
any related mental health services and supports that enable them
to benefit from their education. Yet despite the intent of this
strong federal entitlement, parents and advocates report that children
are not receiving many of the promised and needed services. Children
and youth with emotional and behavioral disabilities are the least
likely to receive the services and supports mandated by IDEA.
The 1997 IDEA amendments mandated that school systems
provide two new services to address the needs of children and youth
with behavioral problems that interfere with their learning or the
learning of those around them. Schools must conduct "functional
behavioral assessments" (FBA) to determine the causes of undesirable
behavior and develop "positive behavioral interventions and supports"
(PBIS) to address them. According to Robert Horner, Ph.D., of the
University of Oregon faculty,
"research conducted over the past 15 years has demonstrated
the effectiveness of strategies that foster positive behavior for
individual students and for entire schools. Even schools with intense
poverty, a history of violence and low student skills have demonstrated
change in school climate when effective behavioral systems have
been implemented."
Despite this history of success, parents and school
personnel report that schools are not implementing the provisions
of the 1997 IDEA amendments. Some profess they don't understand
the statute; others are ignoring or actively subverting the law.
In almost all cases, it is apparent that school personnel are unaware
of how effective (and relatively inexpensive) these interventions
can be.
EPSDT and Medicaid: Medicaid-eligible
children should also benefit from the early screening required under
the Medicaid's Early Periodic Screening, Diagnosis and Treatment
(EPSDT) mandate and a generally broader array of services in state
Medicaid plans than is available in the private sector. Under EPSDT,
all states must screen Medicaid-eligible children, diagnose any
conditions found through a screen and then furnish appropriate medically
necessary treatment to "correct or ameliorate defects and physical
and mental illness and conditions discovered by the screening services."
(15)
Children and youth up to age 21 have a broader entitlement
than adults who qualify for Medicaid. For adults, some services
are mandatory, but some need only be provided at a state's option.
A state will list its "optional" services in its Medicaid plan,
but must make available to children all services listed in federal
Medicaid law "whether or not such services are covered under the
state plan." (16) Few states have
good tools to identify children with mental health needs and most
fail to monitor providers or health plans to ensure that children
receive behavioral health screens.
Medicaid's EPSDT program, especially when used in
conjunction with IDEA, is the ideal vehicle for meeting the comprehensive
mental health needs of children and youth. The program requires
that states conduct regularly scheduled examinations (screens) of
all Medicaid-eligible children and youth under age 22 to identify
physical and mental health problems. If a problem is detected and
diagnosed, treatment must include any federally-authorized Medicaid
service, whether or not the service is covered under the state plan.
If problems are suspected, an "inter-periodic" screen is also required
so the child need not wait for the next regularly scheduled checkup.
Child mental health services under Medicaid have undergone
considerable change over the past decade. For many years, states
had included more comprehensive mental health benefits for adults
than for children and youth. After the enactment of legislation
requiring coverage of all Medicaid-covered services for children
through the Early Periodic Screening Diagnosis and Treatment (EPSDT)
mandate in 1990, states began revising their rules and expanding
coverage of child mental health services.
Shortly after these revisions began to occur, states
also began to move the Medicaid population in need of mental health
care into managed care, generally into separate "carved-out" specialized
managed behavioral health care plans. By 1998, 54 percent of Medicaid
beneficiaries were enrolled in managed care programs.
(17)
(Health Care Financing Administration, 1998). Due
to the rapid expansion of covered services early in the 1990s and
the subsequent introduction of managed care, it is pertinent to
question whether children and youth actually receive these community-based
services and to determine the patterns of service use. Key stakeholders
continue to cite the lack of attention to the special needs of children
and youth as the most serious problem with the public mental health
system. (18)
By offering waivers and options Medicaid law also
affords states other policy choices that could expand access to
mental health services. The Home-and Community-based Waiver allows
states to provide alternatives to hospitalization to children with
disabilities, including children and youth with emotional disturbance.
The waiver allows states to provide various community support services,
but only three states have availed themselves of this waiver for
children with emotional disturbance. Significantly, however, a recent
study indicates that the Medicaid home-and community-based waiver
is effective in reducing the incidence of custody relinquishment
and institutional placement in the three states where they are in
use. (19)
However, Medicaid does not cover all low-income and
other children and adolescents who have no access to mental health
treatment. Moreover, while the array of covered services is fairly
broad, some home- and community-based services are still excluded
from coverage under many state Medicaid programs.
Denial and Inaccessibility of Services
Despite the IDEA and EPSDT entitlements, children
and youth in many states fall through the cracks of the public systems
of care. This happens even in states like California, with well-developed
local government infrastructure:
"Despite the integrity of individual programs-and
even with the extraordinary contributions of so many individual
professionals-incremental efforts add up to less than the sum of
their parts. The programs often fall short of providing the right
services, in the right way, to the right children at the right time.
Year after year, new commitments--even with additional funding--fail
to achieve the goals so desperately desired."
(20)
Services are often denied not out of malice, but because
of the lack of coordination among systems of care and complexity
of funding arrangements:
"Funding is restricted by complex rules that encourage
communities to forsake those in the path of danger and focus only
on those children who are physically bruised and emotionally broken."
(21)
Moreover, the criteria that youth must meet before
they can receive services can easily be interpreted to deny services.
(22) In practice, many states do not have specific definitions
of all covered services, so it is likely that many Medicaid-eligible
children receive neither the mental health screens nor the mental
health treatment to which they are entitled by EPSDT. The shortage
of knowledgeable legal advocates virtually ensures that the rights
of many children to EPSDT services will not be enforced.
Access to services is limited due to lack of insurance
coverage for mental health services and inadequate access to the
special education and related mental health services for which children
and youth are eligible through IDEA. For example, ten million children
and youth lack health insurance and many more are under-insured
for mental health treatment and exhaust their benefits. An estimated
30 percent (3 million) of those 10 million are eligible for Medicaid,
but their families are unaware that they qualify.
(23)
As states have sought to "do more with less," they
have also sought out managed care approaches to limiting Medicaid
expenditures. Instead of bridging the gap between child-serving
agencies, however, states' shift of Medicaid to managed care has
stranded even more children with serious mental health needs.
(24)
Tragic Consequences for Children, Youth and
Society
Custody Relinquishment:
Due to lack of community-based services and/or special education
services, families of children with emotional disturbance are often
faced with the heart-wrenching choice of not receiving adequate
mental health services for their children or relinquishing custody
of their children in order to qualify for Medicaid. Child mental
health advocates and professionals have recognized the issue of
custody relinquishment for many years. (25)
Requiring families to give up custody:
- traumatizes both children and parents;
- limits family involvement in key decisions about
their children's mental health, health and educational needs;
- undermines family integrity;
- unnecessarily burdens public agencies with children
who are neither abandoned; nor neglected, but whose families need
services and support to raise them at home; and
- penalizes families for the state's failure to develop
adequate services and supports.
Requiring families to relinquish custody to the child
welfare system in order to obtain essential mental health services
and supports for their children wastes public funds and destroys
families.
Inadequate funding of mental health services and support
for children and their families is the major reason families turn
to the child welfare system for help. Private insurance plans often
have limits on mental health benefits that can be quickly exhausted
if the child has serious mental health needs. In addition, many
private plans do not provide the home and community-based services
and supports that are needed to keep children at home. When their
personal funds run out, families are forced to turn to the child
welfare system.
Even families whose children are eligible for Medicaid
face custody relinquishment. Although many of the needed services
are covered, states fail to adequately define their rehabilitation
services, to educate providers on how to bill for those services,
or to make sure that Medicaid recipients know the array of services
to which a child is entitled. When parents then turn to the child
welfare agency, the agency often requires--as a nonnegotiable condition
for obtaining those services--relinquishment of custody to the state
or county. In large part, this is driven by the child welfare agencies'
mistaken belief that custody is required in order to draw federal
matching funds under the Social Security Act.
Educational System/Special Education/Discipline:
Due to the stresses of poverty, children and youth from low-income
families are disproportionately represented in the young population
with emotional disturbance. The inequities of the neglect of these
children by schools and the public mental health system are further
compounded by racial discrimination.
The failure to provide early screening and mental
health services has meant that as many as 35 percent of students
entering school are considered to be at high risk for social and
academic failure. (27) Once in school,
the failure or refusal to provide IDEA services results in much
greater drop out rates for children and youth with emotional disturbance.
(28) This has led researchers to recommend a new approach
to screening, and to identifying a child's strengths rather than
deficits.
In perhaps the classic attempt to blame the victim,
school districts that have failed or refused to provide preventive
services under IDEA has also led, inexorably, to treating children
with emotional disturbance as "discipline problems." In a series
of attempts to amend the IDEA over the past three years, Congress
has increasingly expanded the authority of school districts to exclude
such children and youth from mainstream classrooms.
The techniques for supporting children with emotional
disturbance--known broadly as "positive behavioral supports"--in
school are well documented. (29)
The use of punishment to correct behavior comes with negative consequences
such as negative attitudes on the part of students toward school
and school staff (which leads to increased antisocial acts and behavior
problems). Punishment of children with emotional disturbance is
strongly correlated with dropping out of school.
(31)
Foster care: The child
protective services and foster care system in the United States
grew out of efforts by early religious and charitable organizations
to serve orphans and "rescue" children and youth from abusive or
neglectful families. Today's federally supported foster care system
was created under the Social Security Act of 1935 as a last-resort
attempt to protect children at risk of serious harm at home. The
law obligated states to assume temporary custody of children whose
parents were unable or unwilling to care for them.
By the early 1990s almost half a million children
were in the custody of state child welfare systems and the U.S.
Department of Health and Human Services estimated that at least
one of every 10 babies born in poor urban areas in the '90s would
be placed in foster care. (32)
Children with emotional or behavioral
disabilities made up 40 percent of the child welfare population
and few resources were available for any type of treatment or support
services. (33) The steady increase
in foster care placements is very troubling. Most children are deeply
traumatized when they are separated from their families. Even when
their family environment has been dangerous or unhealthy, studies
have shown that a child often experiences separation from a primary
care giver as a threat to survival. (34)
Family disintegration and allegations of abuse are
the most frequent reasons that children are placed in foster care,
and these reasons are often rooted in the inability to get mental
health services and support for parents and/or children. These findings
are documented more fully in the Custody Relinquishment section,
above, and are considered further in the Adult chapter, below.
According to the Annie E. Casey Foundation, every
year 25,000 young people in foster care turn 18 and leave foster
care. This means that young people in state-supervised programs
must leave foster care whether or not they have the skills to maintain
an apartment, seek and hold a job, or balance a checkbook. Too many
18-year-olds emerge without having had a stable foster-care environment
or adequate mental-health services or a quality education. According
to one recent study, 12 to 18 months after they left foster care,
half of those who left were unemployed and a third were receiving
public assistance. Clearly, youths who "age-out" of foster care
are among the most vulnerable and the most at risk.
Juvenile Justice:
Each year, more than one million youth come in contact with the
juvenile justice system and more than 100,000 are placed in some
type of correctional facility. Studies have consistently found the
rate of mental and emotional disabilities higher among the juvenile
justice population than among youth in the general population. As
many as 60-75 percent of incarcerated youth have a mental health
disorder; 20 percent have a severe disorder and 50 percent have
substance abuse problems. (35)
The most common mental disabilities are conduct disorder,
depression, attention deficit/hyperactivity, learning disabilities
and posttraumatic stress. (36) According
to a 1999 survey conducted by the National Mental Health Association
(NMHA) and the GAINS Center, mental health problems typically are
not identified until children are involved with the juvenile justice
system, if at all.
Although African-American youth age 10 to 17 constitute
only 15 percent of their age group in the U.S. population, they
account for 26 percent of juvenile arrests, 32 percent of delinquency
referrals to juvenile court, 41 percent of juveniles detained in
delinquency cases, 46 percent of juveniles in corrections institutions,
and 52 percent of juveniles transferred to adult criminal court
after judicial hearings. In 1996, secure detention was nearly twice
as likely for cases involving black youth as for cases involving
whites, even after controlling for offenses.
(37)
Many youngsters have committed minor, nonviolent offenses
or status offenses. The increase in their incarceration rates is
a result of multiple systemic problems, including inadequate mental
health services for children and more punitive state laws regarding
juvenile offenders. These nonviolent offenders are better served
by a system of closely supervised community-based services, including
prevention, early identification and intervention, assessment, outpatient
treatment, home-based services, wraparound services, family support
groups, day treatment, residential treatment, crisis services and
inpatient hospitalization.
Intensive work with families at the early stages of
their children's behavioral problems can also strengthen their ability
to care for their children at home. These services, which can prevent
children from both committing delinquent offenses and from re-offending,
are most effective when planned and integrated at the local level
with other services provided by schools, child welfare agencies
and community organizations.
More than one in three youths who enter correctional
facilities "have previously received special education services,
a considerably higher percentage of youths with disabilities than
is found in public elementary and secondary schools."
(38)
Many children with emotional disturbance end up in
detention facilities as a result of incidents at school and/or because
they fail to receive special education and related mental health
services. In addition, many juveniles are released from detention
facilities without appropriate discharge services, and end up being
re-incarcerated.
Young people with emotional disturbance are punished
for the failure of systems designed to protect them. Because schools
fail to identify and serve youth with emotional disturbance, these
children miss out on much or all of the "free and appropriate public
education" to which they are entitled under the federal Individuals
with Disabilities Education Act (IDEA), even though IDEA funds services
for such children. (39)
Although IDEA requires educational plans to be in
place prior to a young person's release from juvenile detention,
and a well-designed and implemented plan, coupled with connections
to the services provided under Medicaid, can mean the difference
between a successful transition to home and community or a repeat
of the negative cycle that landed the juvenile in detention in the
first place, few states implement this requirement. Thus, juvenile
offenders with emotional disturbance frequently fail to reconnect
with the education system upon their release.
Without the appropriate intervention, students whose
behavior could and should be addressed in school are ending up in
juvenile detention. Each year over 100,000 youth are detained in
correctional facilities. These institutions have been called the
"de facto" psychiatric institutions for adolescents with mental
health problems because they substitute incarceration for needed
treatment. A recent survey by the Pittsburgh Post-Gazette found
that 80 percent or more of the residents of Pennsylvania's juvenile
detention centers had a diagnosable psychiatric problem. Arkansas
and New Mexico reported that 90 percent of their juvenile detainees
were on psychotropic medication.
Effects of Welfare Reform:
In the implementation of welfare reform, policy makers have to date
focused rather narrowly on the needs of the adult recipients. In
particular, reform efforts have concentrated on recipients who are
relatively well-positioned to enter the workforce, that is, who
do not have evident disabilities or special needs. States have declared
remarkable success in their initial efforts to reduce welfare rolls,
moving off welfare large numbers of individuals and capitalizing
on the current demand for workers. Now, states are beginning to
face some unanticipated consequences of return-to-work policies
particularly on adults with significant problems (such as those
who have mental health and substance abuse issues) and on parents
whose children have special needs. States are facing the reality
that there is a residual population of welfare recipients whose
capacities to work are challenged by these problems.
What might easily be overlooked in the debate on welfare
reform is that the children of welfare recipients--both those who
have already been counted as "successes" and those remaining on
welfare due to special needs--may, themselves, have significant
problems. Recipients who have successfully returned to work may
have marginal work skills and find themselves in low-level jobs.
When they have children with serious emotional disturbance, they
may be confronted with parental demands that pull them away from
already-precarious work situations. For example, school systems
are often ill prepared to deal with special-needs children and seek
to exclude them from the classroom. Child care centers are often
not prepared to handle children with significant behavioral problems
and these children may be expelled, creating significant job-related
problems for the parent.
Those welfare recipients who have not yet entered
the workforce includes significant numbers of individuals with significant
problems of their own, such as depression, post-traumatic stress
disorder, and chemical dependency. These problems among parents
have been identified as risk factors for emotional disturbance among
their children. The movement of these adults into the workforce,
which is already a formidable goal, may pose new problems for their
high-risk children. For example, children with serious emotional
disturbance who have been reliant on parental care and supervision
within the home may, for the first time, be entering child care
arrangements outside of the home. These settings must be prepared
to offer special approaches appropriate to the needs of these children.
In addition, it is likely that the workplace success of recipients
who are already struggling to overcome their own problems will be
compromised by the added stress of disruptions in their children's
functioning.
This array of factors suggests that the special needs
of children do not simply coexist with welfare reform; parental
return-to-work has both an effect upon these children and is affected
by these children. However, few policies thus far have considered
the interaction of welfare reform and recipients' children with
serious emotional disturbance. Most states have not worked to ensure
that the needs of these children are addressed. As the policy and
legislative focus comes to be redirected to the hardest to serve
welfare recipients (which may well include a significant number
of parents of children with special needs), the well being of children
will increasingly come to be an issue.
Psychiatric Hospitalization and
"Residential Care": Traditionally, the mental health
services available to children with emotional disturbance have tended
to fall at two ends of a continuum: 1) treatment in a residential
facility and 2) individual, usually once-a-week therapy. Yet youth
with emotional disturbance need one or more of a broad spectrum
of therapeutic modalities between these two poles. These include
ongoing intensive services in their home community and school. Additionally,
their families need support services, education and training on
how to best handle the youngster and his or her problems.
In many cases, the lack of home-and community-based
mental health services results in unnecessary institutionalization.
Deprived of services, the condition of many children and youth with
emotional disturbance worsens and reaches crisis proportions, leaving
commitment to a residential treatment facility as the only option.
Though residential treatment centers lack studies supporting their
effectiveness, this treatment--which serves a small percentage of
youth --consumes one-fourth the outlay on child mental health.
(40)
Referrals to residential treatment facilities--often
unnecessary--remove the child far from home and community; sometimes
out of the county or even the state for extended periods of time.
Moreover, after leaving the hospital, the lack of transitional services
and/or intensive in-home services and supports frequently result
in children and adolescents cycling from home to hospital and back
again without ever achieving stability.
However, effective home- and community-based services--such
as in-home services, behavioral aides, intensive case management,
day treatment, family support and respite care, parent education
and training, and after-school and summer camp programs--do exist.
Of these services, the Surgeon General's report found home-based
services and therapeutic foster care to have the most convincing
evidence of effectiveness. (41)
These services are furnished in partnership between
professionals and families, are clinically and fiscally flexible,
and individually tailored for each child and family, providing whatever
intensity of service is needed. Home- and community-based services
build on strengths and normal development needs rather than just
focusing on problems, and provide continuity of care. They strive
to be culturally competent and involve the family in the child's
care. Evaluations of these community-based services have found them
to be highly effective, less costly than the alternative residential
services and much preferred by families. (42)
Chapter
4
Impact on Adults
Crisis Focus
Every year, youth who have been ill-served by mental
health, education and foster care "age out" of those systems and
become adults, without the explicit entitlements to mental health
and other care they had as youth. Despite the inevitability of this
process, the adult mental health system does little to anticipate
their arrival, and invests little in programs of prevention. Like
the youth-serving systems examined in the last chapter, the adult
systems devote very few resources to people until they reach the
point of crisis.
For adults, neglect or poor treatment by the mental
health system increases the likelihood an adult with mental illness
will encounter other more coercive and crisis-oriented systems,
like law enforcement, corrections, institutionalization and emergency
rooms. Absent the services and supports they need in the community,
people with serious mental illness become caught up in the criminal
justice system. Ironically, these individuals are often discharged
from jails and prisons into the community with little or no planning
for treatment. Lacking treatment, their lives become a revolving
door of arrest, incarceration, release and rearrest.
With coordination among these systems almost totally
lacking, individuals and families living with mental illnesses are
faced with a mental health system that swings between the extremes
of abject neglect and unwanted intervention, never quite providing
the appropriate level of services to sustain them in the community:
- Underfunded systems ration care to those "most
in need," almost guaranteeing that people will be denied services
and supports until they are in crisis;
- Without preventive services and supports, most
individuals and families living with mental illnesses have difficulty
attaining economic self-sufficiency, and become more dependent
on inadequate "safety net" programs like Supplemental Security
Income disability and welfare payments;
- Once in crisis, the mental health, criminal justice
and correctional systems are primed to respond with coercive measures
which tend to undermine the principles of self-determination and
consumer direction, and make it harder to achieve recovery and
economic self-sufficiency; and
- Crisis-driven services (and monitoring of coercive
measures) are dramatically more expensive; they drain resources
away from voluntary, preventive services in the community, resulting
in long waiting lists and further deterioration of people in need.
By now, it is beyond debate that it is fiscally more
prudent to address mental health needs before they reach the point
of crisis. (43)
But the extraordinarily low priority placed on mental
health services, and the "Balkanization" of state budgets virtually
ensures that agencies will continue to seek out ways to push "bothersome"
clients onto the rolls of other public agencies.
Missed Opportunities for Prevention
Big Investments in Big Hospitals
and Precious Little for Community-Based Services: Historically,
mental health systems have devoted a large share of their resources
to sustaining large psychiatric hospitals in urban centers or in
rural areas. One of the most straightforward ways to finance community
services for individuals who would otherwise be needlessly institutionalized
is to redirect institutional funds to community services.
Since 1955, states have been reducing the capacity
of their state psychiatric institutions. However, until quite recently
they accomplished this by reducing the size of the hospitals, not
by closing them down. More recently, states have begun to close
entire institutions, freeing up considerable state resources that
can be redirected to support community living. For example, more
state psychiatric hospitals were closed in the first half of the
1990s than in the 1970s and 1980s combined.
(44)
Since 1990, a total of 40 such hospitals have been
closed.
Recent experience in Indiana demonstrates how such
an approach can produce both positive outcomes for individuals and
savings for the state. (45)
Indiana closed a hospital that was housing individuals
with serious mental illness who had a mean length of stay of over
eight years. After the hospital closed, most went to some form of
24-hour care or monitoring in the community and were served by programs
providing intensive levels of service. The state also provided three
years of special funding to local community programs specifically
to ease the transition for these individuals. This funding, redirected
from hospital spending, allowed communities to meet the needs of
dischargees without squeezing them into existing treatment slots
or adding to already over strained community programs.
The individuals benefitted from services in more
integrated settings and showed positive outcomes, such as improved
functioning and quality of life. Savings for the state were significant.
Per-person costs went from $68,400 for a year's hospital care to
$40,600 for those placed in the community. However, some individuals
were placed in alternative institutions (such as a nursing homes,
which do not represent community integration), whose costs were
a little higher. As a result, the overall average cost for the year
following closure was $55,417 per person discharged. Still, this
represented a savings of 19 percent of funds expended to maintain
these individuals in the state hospital.
Counter to this trend, and to the clear mandate of
the Supreme Court's Olmstead decision, some states have dug
in their heels, and have attempted to rebuild large state institutions,
while starving community-based mental health care. One such example
is Laguna Honda Hospital, a 1,200-bed skilled nursing facility owned
and operated by the City and County of San Francisco. Three fourths
of the facility's annual reimbursement comes from Medicaid and Medicare.
The city is proposing to build another huge public facility and
an assisted living building on the same grounds as the current nursing
home. The citizens of San Francisco passed a bond referendum allowing
the city to spend up to $299 million to create a facility or facilities
to replace Laguna Honda. Such an expenditure would foreclose the
development of the community-care options required under Olmstead.
(46)
Denial And Inaccessibility of Services
Medicaid is a principal source of funding for the
health and mental health services that states offer in the community
to public-sector consumers released from institutional settings
under the Olmstead mandate. The Social Security Act allows
states to waive traditional Medicaid rules to set up systems of
managed care for Medicaid enrollees. States began using the waivers
to offer medical services through managed care. By now, many have
expanded their waivers to include (mental health and addiction treatment
for some or all of the Medicaid population.
This shift of Medicaid into managed care arrangements
is beginning to blur the borders that have distinguished public
and private sectors. At first, the populations with more extensive
service needs largely remained in fee-for-service Medicaid programs;
however, states are now planning ways to refine these systems to
eliminate the inefficiencies of overlapping, cumbersome bureaucracies.
They are also beginning to evaluate their expenditures in terms
of the clinical outcomes they are purchasing. Whether directly,
through managed care contracts with commercial insurance companies,
or through states' application of business practices to fee-for-service
systems, the experiences of the private market are being transported
to the public sector and the respective systems are moving closer
together. In communities, individuals and families encounter both
considerable overlap and significant gaps in services, with no one
organizational structure that can resolve these defects. The trend
appears to be increasing with the introduction of managed care plans
into Medicaid mental health service delivery.
Community Mental Health is Closed
When it Should be Open: As a consequence of underfunding,
poor resource allocation and the (not infrequent) desire to shift
the cost of hard-to-serve clients to other public systems, the community
mental health system in most states is only "open" from 9 a.m. to
5 p.m. Unlike other public systems, like emergency rooms, law enforcement
and corrections, which are "open" 24 hours per day, seven days per
week, the mental health system is often "closed" (except for hospital-based
services) during evenings and weekends, when many people with mental
illnesses experience the greatest need. During those times, when
adults with mental illnesses come to the attention of the police,
they are processed through the justice system (or taken to an emergency
room for psychiatric evaluation), rather than being diverted to
the less-costly, more appropriate community-based mental health
service system that should be meeting their needs.
Geographic Inaccessibility:
Even if they have some sort of insurance coverage, many adults with
mental illnesses who live in rural areas lack effective access to
the mental health services and supports they need because they simply
live too far from providers, who are typically centered in urban
and suburban areas. The advent of managed care in the Medicaid and
public mental health systems over the past ten years has further
diminished the number of providers willing to serve rural clients.
Language and Cultural Barriers:
Most state mental health systems still lack the ability to serve
people of color and language minorities in their own traditions
and their own language. The Surgeon General recently reported "striking
disparities" in mental health care for racial and ethnic minorities,
and that these disparities "impose a greater disability burden on
minorities," and that people from diverse cultures collectively
experience a greater disability burden from mental illness than
do whites. This burden is directly attributable to the fact that
people from diverse cultures systemically receive less care and
poorer quality of care, rather than from their illnesses being inherently
more severe or prevalent in the community.
(47)
Tragic Consequences for Adults and for Society
Homelessness: On any
given day, approximately 150,000 people with severe mental illnesses
are homeless, living on the streets or in public shelters. Homelessness
is not a symptom of mental illness. It is an artifact of mental
health systems that do not link consumers to accessible housing
and do not offer needed supports and services, or that operate residential
programs experienced by consumers of mental health care as coercive.
Homelessness among people with serious mental illnesses underlies
many of the problems that spill over from the mental health system,
including the problem of criminalization. Yet the successes reported
by many local programs demonstrate that most homeless people with
mental illnesses can live with stability in their communities if
they receive a combination of sustained outreach, case management,
health and mental health services, housing and employment assistance.
(48)
Criminalization of Mental Illnesses:
Jails are becoming America's new mental hospitals. As a result,
jail facilities are faced with a role they were neither designed
nor staffed to assume. Between 600,000 and one million men and women
jailed each year have a mental illness. This is thought to be eight
times the number admitted to psychiatric hospitals. Many of these
people are arrested for non-violent misdemeanors, others for "crimes
of survival" such as stealing food, loitering, or trespassing. Still
others are detained in "mercy arrests" by police officers who find
the public mental health system unresponsive and the process of
accessing its emergency services cumbersome.
As many as 16 percent of all jail inmates have a severe
mental illness, according to the U.S. Department of Justice. Many
were arrested for reasons related to their unmet needs for mental
health or addiction treatment and for housing. Many people with
mental illnesses are homeless and frequently arrested for "esthetic"
or "quality of life" misdemeanors that result from their lack of
access to mental health services and that police routinely ignore
when committed by others.
Predominantly, prisoners with mental disabilities
are poor and people of color. Along with details about the plight
of other major racial and ethnic minority groups, a report released
August 26, 2001, by the U.S. Surgeon General, entitled Mental
Health: Culture, Race and Ethnicity, indicates that disproportionate
numbers of African Americans are represented in the most vulnerable
segments of the population--people who are homeless, incarcerated,
in the child welfare system, victims of trauma--all populations
with increased risks for mental disabilities.
People with mental illnesses, with mental retardation,
and with associated substance abuse (hereinafter "people with mental
disabilities") are increasingly brought into the criminal justice
system. They are arrested for various minor offenses--many times
for "crimes of survival" as they struggle to live on the streets--and
incarcerated in jails and prisons where their treatment needs are
not met. Typically, these are offenses people who do not have mental
disabilities either would not commit or which prompt a warning...not
an arrest. Often, people with mental disabilities are living in
circumstances so characterized by neglect that police and others
in the community may even view these arrests as acts of "mercy."
Instead of punitive actions, these individuals need
assistance. However, failures in service systems and the lack of
collaboration between mental health, mental retardation, substance
abuse, and criminal justice systems prevent them from receiving
adequate supports and care. This is especially true for individuals
who are homeless, whose mental illness is particularly hard to treat,
and those with co-occurring substance abuse.
In addition to being greater in number, inmates with
mental illnesses tend to have a history of more significant problems
when compared with other inmates. Many lead chaotic lives. Inmates
with a mental illness were less likely to be employed in the month
before the arrest; 37.7 percent in federal prisons were unemployed,
compared with 27.5 percent of inmates who did not have a diagnosis
of mental illness. Inmates with a mental illness are more likely
to reflect one or more of the factors that put people at risk, such
as:
- growing up in foster care;
- living with a substance-abusing parent;
- or being physically or sexually abused;
- More likely to have been homeless;
- More likely to be unemployed at the time of arrest;
(49)
- More likely to be under the influence of drugs
or alcohol at the time of the arrest; (50)
- More likely to grow up in foster care, agency or
institution; (51)
- More likely to have been physically or sexually
abused while growing up; (52)
and/or
- More likely to grow up with a parent who abused
alcohol. (53)
Once incarcerated, these men and women are even less
likely to receive adequate treatment than when they were at liberty--both
because the criminal justice system lacks the capacity to deliver
comprehensive mental health services and because punitive jail settings
are the antithesis of a therapeutic environment. In all likelihood,
the number of incarcerated people with disabilities has increased,
given the extensive publicity accorded to violent acts by people
with mental illnesses, however rare, along with the increased public
cynicism about deinstitutionalization, the diminished tolerance
of abnormal behavior and the expanding use of police tactics such
as "mercy arrests." (54)
While some jails and prisons provide mental health
services, the emphasis should not be on improving these services
in a coercive anti-therapeutic environment. Rather, investment should
be made in diversion. It should extricate people with mental illnesses
from the revolving door of re-arrest, they must be provided with
discharge planning to help them obtain public benefits and link
them to community treatment. Yet nationally, only one third of inmates
with mental illnesses receive discharge planning services.
When released from jail or prison, inmates with mental
illnesses seldom receive the assistance they need for successful
re-entry into the community. (55)
Without adequate discharge planning prior to release,
they have no access to medication and other needed mental health
services, to housing, or to employment or income support.
(56) Studies have shown that recidivism rates fall when
discharge planning and linkage to effective aftercare services is
provided.
Individuals sentenced to jail or prison lose their
entitlement to Medicaid and other public benefits. There is even
a financial incentive for correctional institutions that promptly
report prisoners' intake to the Federal Government. But there is
no incentive to the criminal justice system to help released prisoners
reestablish or initiate such benefits. Reinstatement involves complex
paperwork and applications take months to process--months during
which many former inmates have no money for medication or housing,
much less counseling.
As is the case with discharge from psychiatric hospitals,
the incidence of recidivism among people with mental illnesses is
directly related to the quality of post-discharge treatment and
supports, including housing. The comprehensive support model pioneered
for homeless people by CSH is highly appropriate for people with
mental illnesses who are returning to the community from jails and
prisons.
Rather than focus on the handful of far-from-typical
violent criminals with untreated mental illness public policy
should concentrate on diverting non-violent offenders with serious
mental illness from the criminal justice system into community-based
treatment programs and expanding those programs so as to reduce
recidivism and prevent the actions that prompt arrest. While those
who have committed serious offenses should receive mental health
treatment in jail, for those who have committed only minor offenses
that are the result of or associated with their illness, incarceration
is neither cost effective, humane nor just. By definition, a penal
institution constitutes a non-therapeutic environment. In fact,
inmates with mental illness are at risk of being victimized, sexually
abused and at increased risk of suicide. (Ninety-five percent of
prison or jail suicides involve inmates with a diagnosed mental
illness.)
The problem of criminalization of people with mental
illness has been exacerbated by the failure of mental health systems
to meet the needs of people in the community after deinstitutionalization
vastly reduced the population in state psychiatric hospitals. The
vision of deinstitutionalization was to allow individuals with mental
illness to be full participants in the community. This goal is even
more realistic today than it was in the 1960s. New anti-psychotic
medications, effective community services (even for those with the
most serious disabilities),and new breakthroughs in treating co-occurring
mental illness and substance abuse, make successful community living
a real possibility for the vast majority of people with mental illness.
To succeed, however, they need access to an array of comprehensive
services, from housing to intensive community mental health services.
Although preventing incarceration must always be the
goal, there will also be a continuing need for policies and programs
that can provide more effective solutions when people with mental
illness make contact with the criminal justice system. There have
been isolated attempts to address this problem through the use of
diversion programs, using the criminal justice process to steer
people with mental illness from jail and into mental health treatment.
Diversion programs offer a variety of approaches,
some of which have been criticized for offering no more than a choice
"between forced medication or jail." Although diversion programs
have been determined effective from a criminal justice perspective--i.e.,
their use reduces the number of inmates with mental illness--their
efficacy has not been studied from a mental health or civil rights
perspective. We need to know whether people with mental illness
who are diverted from jails are receiving mental health treatment
that allows them to participate in community life and avoid further
contact with the criminal justice system and whether their civil
rights have been respected during the process.
Mental Health Courts
As a response to the growing number of people with
mental illnesses being confined to jail or prison, a number of local
jurisdictions have developed mental health courts. These specialty
courts are modeled on drug courts, and purport to focus on "therapeutic
jurisprudence" rather than punishment. In 2000, Congress passed
legislation to provide limited funding for mental health courts
in 50 jurisdictions.
Advocates, however, are wary of the courts:
Mental health courts are, to many people, an appealing
response to criminalization. But the mental health courts that
exist so far, with very few exceptions, accept only people charged
with non-violent low-level offenses. While these courts help some
people get services, they do nothing to help mental health consumers
facing prison or lengthy jail sentences, and they do not reduce
criminalization. If mental health courts increase the "price"
of minor offenses, as some undoubtedly do, their effect is actually
to expand criminalization, a phenomenon known as "net-widening."
(57)
This "net-widening" is of concern because police officers
may arrest people whom they would have otherwise warned, told to
"move on", or ignored in an effort to secure them services via the
mental health court. Mental health courts may also result in people
with mental illness receiving more severe sanctions for petty criminal
offenses than they would have received through the regular court
system. They may spend more time in jail or other secure confinement;
they may find themselves under judicial supervision for a longer
period of time, and they may have to plead guilty to charges that
might otherwise have been dismissed. Moreover, they may not be adequately
counseled by their lawyers as to these potential risks, and judges
and court personnel may be giving inaccurate information concerning
these risks.
Poverty/Unemployment:
Improvements in treatment and advances in community-based rehabilitation
services mean that more people with serious mental illnesses are
able to work.
Unfortunately, the unemployment rate for people with
mental illness hovers at 85 percent, higher than for any other disability
group. Factors such as stigma and public misperception of mental
illnesses only partially account for this situation. Many people
can and do recover from mental illness. A variety of specialized
services such as supported employment, transitional employment and
psychosocial rehabilitation enable people with mental disabilities
to work and have a satisfying and rewarding career.
Several federal agencies provide vocational rehabilitation
services for people with disabilities: the state-federal public
vocational rehabilitation system, the Social Security Administration
and the Department of Labor. These federal programs work cooperatively
with state and private rehabilitation providers to increase employment
among people with disabilities. Recent federal legislation includes
provisions to facilitate work for those who receive disability
benefits by allowing easy re-entry into rehabilitation
programs if there is a reoccurrence of symptoms and by creating
a voucher program to allow consumers to go to the provider of their
choice.
The federal Vocational Rehabilitation (VR) program
provides funds to states for assisting individuals with disabilities
to work. Unfortunately, state VR programs focus primarily on individuals
with less serious disabilities. People with severe mental illnesses,
in particular, do not fare well in these systems, because they frequently
require intensive services over longer periods of time to obtain
and maintain employment.
Moreover, considerable VR resources are spent on eligibility-determinations
and administrative functions, while inadequate resources go to direct
services. Months or even years may pass between the time an individual
with a severe mental illness applies for VR services and the time
that services actually begin.
While the recently enacted Ticket to Work and Work
Incentives Improvement Act of 1999 theoretically enhances the ability
of a person with a psychiatric disability to find work without losing
income and Medicaid benefits, the new law is very complicated, and
has not led to significant new job opportunities.
Involuntary Outpatient Commitment
In many states, the abject neglect of the needs of
people with psychiatric disabilities and the predictable deterioration
that will be experienced by some has led to a call for more coercive
practices, like involuntary outpatient commitment (IOC). IOC is
a legal strategy that utilizes court orders and other means to force
individuals with psychiatric disabilities to participate in mandatory
treatment, merely because someone else has made a judgement that
they would benefit from psychiatric treatment. An individual can
be forced into treatment despite the fact that no crime has been
committed and notwithstanding that he/she does not meet the requirements
for inpatient commitment (i.e., that the person is a clear and present
danger to self and/or others).
When a court issues a civil commitment order, requiring
an individual to submit involuntarily to treatment for a serious
mental illness, the person has historically been confined to inpatient
treatment in a public hospital. Today there is new interest in IOC,
linked to media reports of violent acts by individuals with diagnoses
of serious mental illnesses and, according to state advocates and
mental health consumers, fueled by a sophisticated public relations
campaign by the Treatment Advocacy Center. Increasingly, the providers
of mental health services to individuals thus committed are private-sector
programs, including psychiatric clinics and group homes.
Private providers--whose cooperation is required to
implement these statutes--are split on IOC. A good many, particularly
social workers, case workers and others working on a person-to-person
level, believe that the requisite reporting on their clients harms
the therapeutic relationship and that the clients'--not coerced--but
voluntary participation is essential to the healing process.
The National Council on Disability has previously
expressed its concerns about such coercion, and reiterates them
here:
Mental health treatment should be about healing, not
punishment. Accordingly, the use of aversive treatments, including
physical and chemical restraints, seclusion, and similar techniques
that restrict freedom of movement, should be banned. Also, public
policy should move toward the elimination of electro-convulsive
therapy and psycho surgery as unproven and inherently inhumane procedures.
Effective humane alternatives to these techniques exist now and
should be promoted. (58)
Involuntary outpatient commitment is a very costly
effort to the individual, to the mental health system, to the criminal
justice system, and to society that holds no promise of the avoidance
of violence in our society, nor of recovery for the individual.
It diverts badly needed funding away from effective community-based
mental health services, especially those founded upon the recovery
vision.
Like so-called "mercy arrests" that bring people with
mental illnesses into the criminal justice/correctional system,
IOC is used far too often to compensate for gaps in community services
that would otherwise engage mental health consumers on a voluntary
basis.
Psychiatric Hospitalization
When all else fails, the mental health system retains
the ability to petition for the involuntary civil commitment of
a person whose mental illness makes him or her a threat to self
or others. In the civil commitment context, federal courts have
said that the Due Process Clause requires a balancing of the individual's
interest in liberty against the state's interest in providing care
and treatment to the individual in order to protect the public (police
power) or to protect the individual (parens patriae).
(59)
As outlined above, however, the crisis focus of mental
health services virtually ensures that "all else" will fail,
and the system will have to rely upon hospitalization.
Chapter
5
Impact on Seniors
Crisis Focus
Like younger adults, seniors with psychiatric disabilities
and limited incomes rely upon public mental health services and
supports they may need to live successfully in the community. They
rely upon many of the same providers as do younger adults, although
the possibility of physical disabilities or frailty in this population
make it more likely that they may be living in nursing homes, assisted
living facilities or other similar settings that may not adequately
provide mental health services and supports. In those instances,
many seniors either go entirely without such services, accept the
marginal services that may be available in those settings, or depend
upon the limited services and supports funded by Medicare or Medicaid
and delivered by community-based providers.
(60)
Mental health care for older Americans is no better
than for the younger cohorts considered in earlier chapters. According
to the American Association of Geriatric Psychiatry, nursing homes
currently are charged each year with the care of 1.5 million older
Americans. More than half suffer from some sort of cognitive impairment
and as many as 80 percent have a diagnosable psychiatric disorder.
Despite the high prevalence of people with mental disabilities in
nursing homes, according to the Surgeon General's report, "these
settings generally are ill equipped to meet their needs."
(61)
Likewise, in the Journal of General Psychiatry,
mental health experts from around the country warn that "(a) national
crisis in geriatric mental health care is emerging. The present
research infrastructure, healthcare financing, pool of mental health
care personnel with appropriate geriatric training, and the mental
health care delivery system are extremely inadequate to meet the
challenges posed by the expected increase in the number of elderly
with mental illness as well as an anticipated increase in late-onset
mental illness as more people live longer."
Significant challenges to the mental health of older
adults relate less to our clinical capacities than they do to older
adults not having access to services known to be effective. For
example, notwithstanding the high prevalence of depression among
older adults, the Surgeon General reports that only 11 percent of
older adults are receiving adequate treatment and 55 percent receive
no treatment whatsoever. Indeed, very few of the 15-25 percent of
older adults over 65 who--according to U.S. Census Bureau estimates--have
a mental illness, receive treatment. Most community surveys suggest
that 1 percent or fewer older adults in their community receive
psychiatric care. They remain underserved by mental health providers,
as shown by the following data:
- Only 4 percent of community mental health center
patients are over 65.
- Fewer than 4 percent of the patients seen by private
practitioners are older adults.
- Less than 1.5 percent of all community-based mental
health care goes to older adults.
A number of factors contribute to the lack of community-based
services for older adults with mental illnesses. Many elders in
nursing homes whose chronic physical ailments do not require institutionalization
(e.g., diabetes) are confined to these settings because they have
a serious mental illness--although effective treatment for both
the former and the latter is routinely administered in the community.
Additionally, to a degree, the low utilization rates
for community-based care reflect older cohorts' sense of shame around
mental health problems and their aversion to seeking help. But they
also are testimony to stagnant public systems that have long traditions
of neglecting older adults' mental health needs that afford older
adults low priority and that, rather than providing rehabilitation,
relegate older adults to custodial care services. The consequences
of the unavailability or inaccessibility of appropriate services
to older adults with mental illness include additional and unnecessary
disability, needless dependency and vulnerability to institutional
segregation.
Missed Opportunities for Prevention
Older adults are the most rapidly growing segment
of our population. Due in part to increasing life expectancy, people
over 65 are expected to grow in number from 20 million in 1970 to
69.4 million by 2030, outnumbering people between 30 and 44. Additionally,
there is evidence that the number of older adults with mental illness
will also increase in terms of both numbers and in the percentage
of the total population that those numbers represent. Thus, the
number of older adults with mental illness is projected to swell
from about four million in 1970 to 15 million in 2030.
Denial and Inaccessibility of Services
The December 1999 Report of the U.S. Surgeon General--the
first of 51 such reports to focus on mental health--devotes a chapter
specifically to older adults and mental health. While acknowledging
the capacity for sound mental health among older adults, the report
notes "a substantial proportion of the population 55 and older--almost
20 percent of this age group--experience specific mental disabilities
that are not part of normal aging. Unrecognized or untreated, depression,
Alzheimer's disease, alcohol and drug misuse and abuse, anxiety,
late-life schizophrenia and other conditions can be severely impairing,
even fatal; in the United States, the rate of suicide, which is
frequently a consequence of depression, is highest among older adults
relative to all other age groups (Hoyer et al., 1999)."
Yet there are effective interventions for most mental
disabilities experienced by older persons (for example, depression
and anxiety and many mental health problems such as bereavement).
Further, the Surgeon General's report asserts that "treating older
adults with mental health disorders accrues other benefits to overall
health by improving the interest and ability of individuals to care
for themselves and follow their primary care provider's directions
and advice, particularly about taking medications."
The Supreme Court's Olmstead decision has particular
significance for older adults with mental disabilities. Arguably--more
so than any other group with mental illness--older adults have endured
a long history of flagrant segregation and societal neglect, most
graphically demonstrated in the deplorable "geriatric back wards"
of state psychiatric hospitals. Despite the shift away from psychiatric
institutions and the promise of community mental health services,
older adults continue to be afforded "back ward" status, as evidenced
by a paucity of community-based mental health services, limited
opportunities for integrated housing, and service systems that emphasize
custodial care over rehabilitation. In fact, largely motivated by
cost savings and convenience rather than clinical need, substantial
numbers of older adults with mental disabilities were trans-institutionalized
from state psychiatric hospitals to nursing homes. Among other people
with mental disabilities, the pivotal Olmstead decision applies
to:
- long-stay patients in psychiatric hospitals who
do not need to be there;
- individuals who frequently cycle in and out of
hospitals as a result of a lack of community services;
- residents in nursing homes who can appropriately
be served in the community;
- individuals residing in the community, but at risk
of institutionalization unless they receive appropriate care.
Like younger people with mental illnesses, seniors
are at significant risk of unnecessary institutionalization. A recent
analysis of Olmstead complaints filed with the Office of
Civil Rights of the U.S. Department of Health and Human Services
reveals that 60 per cent of the complaints have been filed by people
living in nursing homes. (62) ADA--and
the integration mandate, in particular--compels states to consider
the civil rights of people with disabilities and to determine whether
their systems of care perpetuate needless segregation and its harmful
effects. As states move to comply with these legal requirements
for diverse populations of disabled individuals, aging advocates
face the challenge of ensuring that older adults are not put at
the end of the line as they compete for limited resources.
Chapter
6
Fulfilling the Promise: Concrete Steps Toward a New Vision
For each population covered in this report, there
are concrete steps that can be taken to improve the quality and
effectiveness of mental health services and supports.
Children and Youth
ENABLING CHILDREN AND YOUTH WITH
MENTAL OR EMOTIONAL DISABILITIES TO FLOURISH IN THEIR COMMUNITIES:
Children with emotional disabilities fall through an historic gap
between the various child-serving agencies in the public sector--notably,
the education, child welfare, juvenile justice and mental health
systems. Efforts to improve this situation should focus on promoting
the systems of care that have been demonstrated effective in bridging
the gap and enabling children to receive Medicaid-funded wraparound
services in their homes or in residential settings near their families.
STATE EFFORTS TO EXPAND MEDICAID
COVERAGE TO CHILDREN AND YOUTH WITH EMOTIONAL DISTURBANCE THROUGH
THE USE OF WAIVERS AND OPTIONS. Since Congress has recently
provided states with an opportunity--through the Child Health Insurance
Program--to expand Medicaid coverage to families with incomes higher
than the Medicaid eligibility ceiling, the Medicaid entitlement
can likewise be extended to more children. Studies of home-and community-based
waivers have focused primarily on the growth in the number of waivers
and the cost-effectiveness for aged individuals, individuals with
mental retardation and developmental disabilities and persons with
AIDS. Among the groups covered in the mid-1990s, individuals with
mental retardation and developmental disabilities reflected the
most rapid growth. They increased from 74,000 in 1992 to 146,000
in 1996. The Centers for Medicare and Medicaid services is currently
funding a study to evaluate the impact on quality of life, quality
of care, utilization, and cost for individuals with mental retardation
and developmental disabilities. Few studies have examined the use
of home-and community-based waivers for children with emotional
disturbance.
PREVENTING EXCLUSION FROM SCHOOL
OF CHILDREN WITH EMOTIONAL DISTURBANCE: Identify and
disseminate a range of services that progressive school systems
have provided through IDEA and under court and administrative rulings,
identifying for state policymakers and advocates the maximum range
of community-based services for children with emotional disturbance
that can be furnished under the IDEA, and enforce the requirement
to conduct functional behavioral assessments and to provide positive
behavioral supports.
PREVENTING CUSTODY RELINQUISHMENT
THROUGH ACCESS TO CHILD MENTAL HEALTH SERVICES: The Family
Opportunity Act would create a new state option to allow states
to expand Medicaid coverage to children with disabilities up to
age 18, who would be eligible for SSI disability benefits except
for family income or resources. Any family with a child whose disability
meets SSI criteria and whose income does not exceed 300 percent
of the poverty level could be covered under Medicaid if the state
chooses this option. The bill also creates a time limited demonstration
program to extend Medicaid coverage to children who have a disability
that would become severe enough to qualify under SSI if they are
left to deteriorate without health care. The demonstration will
provide useful information on the cost effectiveness of early health
care intervention for children with potentially severe disabilities.
The Family Opportunity Act would add residential treatment
centers to the waiver statute and thus allow states to provide waivers
to families seeking home and community based services instead of
more restrictive care in such centers. (63)
EXTENDING MEDICAID AND OTHER
BENEFITS TO YOUTH AGING OUT OF FOSTER CARE: The vast
majority of young people in the foster care system are there because
they have experienced some form of childhood maltreatment. Research
reveals that negative childhood experiences, especially abuse and
neglect, can adversely affect adult health and mental health. Adults
with aversive childhood experiences are also more likely to be depressed,
attempt suicide, have unintended pregnancies, and have personality
disorders. Substance abuse problems and alcoholism are also correlated
with negative childhood experiences. Extension of Medicaid benefits
will help address the needs of these youths. Health care benefits
will allow young people to receive treatment for health or mental
health problems before the problems become severe.
FEDERAL LEGISLATION ON AMENDING
INSURANCE LAWS TO END PRACTICES THAT HAVE THE EFFECT OF DISCRIMINATING
AGAINST PERSONS WITH MENTAL ILLNESS: Legislation should
be drafted to address the unequal access to mental health care that
is prevalent in all aspects of the United States health care system,
including private insurance, public insurance, and programs designed
to bridge the gaps between the private and public health insurance
sectors.
DOCUMENT HOW EXISTING ENTITLEMENT
PROGRAMS CAN BE USED TO PREVENT CONTACT WITH THE JUVENILE JUSTICE
SYSTEM AND TO DIVERT CHILDREN AND YOUTH FROM JUVENILE JUSTICE.
In its 2000 report, From Privileges to Rights, NCD called
upon Federal, state, and local governments, including education,
health care, social services, juvenile justice, and civil rights
enforcement agencies to work together to reduce the placement of
children and young adults with disabilities, particularly those
labeled with emotional disturbance, in correctional facilities and
other segregated settings. These placements are often harmful, inconsistent
with the federally-protected right to a free and appropriate public
education, and unnecessary if timely, coordinated, family-centered
supports and services are made available in mainstream settings.
Advocates have begun to document how existing entitlements
to family supports and community-based intensive mental health treatment
can prevent children's behavior from deteriorating to the point
of warranting incarceration. The National Mental Health Association
and the GAINS Center have recommended that communities: (1) formalize
screening and assessment for mental health and substance abuse for
youth at all points of contact of the juvenile justice system; (2)
provide the full range of mental health and substance abuse services
and supports to youth, and cease the piece meal, stop gap approach
that currently exists; and (3) establish a coordinating body or
task force that focuses on this population of youth.
(64)
PROTECTING BENEFITS UNDER WELFARE
REFORM FOR PARENTS WITH MENTAL ILLNESSES AND PARENTS WHOSE CHILDREN
HAVE EMOTIONAL DISABILITIES: As Congress considers reauthorization
of the 1996 "welfare reform" law, it has the opportunity to strengthen
the entitlement to cash payments and Medicaid benefits for poor
families in which a parent or child has significant mental health
issues which prevent a head of household from returning to work.
Adults and Seniors
ADA/OLMSTEAD OFFER SOLUTIONS: ENDING ISOLATION
AND SEGREGATION
While a state is not obliged to assume an "undue burden"
in its pursuit of integrated services for people with serious mental
illnesses, nothing in Olmstead requires community placements
to be "cost-neutral." Indeed, the entire tenor of the decision is
to the contrary. The court recognizes that needless institutionalization
is a wrong that the ADA was designed to redress. It is clear that
an accommodation under the ADA can be reasonable even if it imposes
costs.
The court did not identify when it would be "too costly"
for a state to provide services in the community. (The issue was
not before the court.) Instead, the court identified relevant factors,
the most significant being the resources available to the state
to fund community services. While the existing community services
system constitutes one available resource, the court made clear
that other resources must also be counted. The Olmstead decision
anticipates the reallocation of resources to fund community placements.
In evaluating what resources are available to finance
community placements, states need to look both at services that
are currently funded and at how community services might be funded
if the state took action to maximize its budget. These "available
resources" can include resources that the state could obtain by
aggressively seeking additional funds--from the legislature, by
restructuring its Medicaid program or through similar strategies.
PROVIDE A LEGALLY ENFORCEABLE RIGHT TO MENTAL HEALTH
SERVICES AND SUPPORTS: By providing a right to services and
supports "in sufficient amount, duration, scope and quality to support
recovery, community integration and economic self-sufficiency,"
a law could transcend the age-old debate about inadequate funding.
For example, the Bazelon Center for Mental Health
Law has drafted a proposal which would provide a legally enforceable
right to recovery-oriented mental health services and supports,
and will be working with advocates in several states around the
country to press for its adoption. (65)
This proposal seeks to reshape the debate about mental health system
reform. This initiative is driven by a growing consensus among many
stakeholders that traces a host of social ills affecting adults
with serious mental illnesses--homelessness, vagrancy, criminalization
and so-called "mercy arrests", unemployment and needless dependency
on public systems--to a single cause. That cause is the inadequacy
of the public mental health system, which does little more than
provide crisis services and fails to meaningfully address the long-term
rehabilitative needs of the population it serves. It is clear that
the absence of an entitlement to appropriate, timely mental health
services has increased the number of people with mental illnesses
in crisis.
MAXIMIZE THE AVAILABILITY OF MENTAL HEALTH SERVICES
AND SUPPORTS PROVIDED THROUGH CONSUMER-DIRECTED ORGANIZATIONS:
People labeled with psychiatric disabilities should have a major
role in the direction and control of programs and services designed
for their benefit. This central role must be played by people labeled
with psychiatric disabilities themselves, and should not be confused
with the roles that family members, professional advocates, and
others often play when "consumer" input is sought. For the past
decade, the Federal Government has provided funding and logistical
support for three consumer-run technical assistance centers. These
centers have helped to document, establish and refine successful
alternative approaches to the provision of mental health services
and supports through the use of other people who have experienced
mental illnesses. The Federal Government should increase incentives
to state mental health systems to adopt such models and to expand
their use.
ENSURE THAT ALL MENTAL HEALTH SERVICES AND SUPPORTS
ARE VOLUNTARY IN NATURE, AND NOT CONTINGENT ON COMPLIANCE WITH MEDICATION
OR TREATMENT PLANS: NCD reaffirms its commitment to the principles
enunciated in its 2000 report, From Privileges to Rights:
"Eligibility for services in the community should never be contingent
on participation in treatment programs. People labeled with psychiatric
disabilities should be able to select from a menu of independently
available services and programs, including mental health services,
housing, vocational training, and job placement, and should be free
to reject any service or program. Moreover, in part in response
to the Supreme Court's decision in Olmstead v. L. C., state
and federal governments should work with people labeled with psychiatric
disabilities and others receiving publicly-funded care in institutions
to expand culturally appropriate home- and community-based supports
so that people are able to leave institutional care and, if they
choose, access an effective, flexible, consumer/survivor-driven
system of supports and services in the community."
FEDERAL LEGISLATION ON AMENDING INSURANCE LAWS
TO END PRACTICES THAT HAVE THE EFFECT OF DISCRIMINATING AGAINST
PERSONS WITH MENTAL ILLNESS: Legislation should be enacted to
address the unequal access to mental health care that is prevalent
in all aspects of the United States health care system, including
private insurance, public insurance, and programs designed to bridge
the gaps between the private and public health insurance sectors.
A longstanding history of discrimination and recrimination
has led to policies which systemically deny needed health care to
millions of Americans with severe mental health needs. People with
mental illness have been alternatively thought of as possessed by
evil spirits, lazy, responsible for their own illness, and infantile.
In the past, individuals with mental health impairments were locked
in institutions. Today, they are locked in jails and prisons because
they are unable to access the care that they need.
The underlying stigma surrounding mental illness has
led to systemic inequality in all health care delivery. For example,
the private sector refuses to insure individuals with a history
of any mental health treatment, when they will insure an individual
with more severe physical health care needs. In addition, caps on
doctors' visits, hospital days and other services are placed on
mental health care, but not on physical health care.
Private insurance, however, is evenhanded between
physical and mental health care in its denial of long term care
to individuals with ongoing health care needs. To address this gap
in private coverage, the Medicaid program has developed waivers
and options which provide health care coverage for a more intensive
package of services to individuals who would not usually qualify
for publicly funded health care by virtue of their income. These
"bridge" programs, however, do not meet the needs of individuals
with mental health impairments. For example, the waiver and option
statutory language does not include residential treatment facilities,
which are where most children with serious emotional disturbance
languish for long periods. As a result, only 3 states have received
waivers for children with serious emotional disturbance, where 50
states have waivers for children with developmental disabilities.
In addition, almost half the states with an option program for children
do not serve any children with a primary diagnosis of serious emotional
disturbance. States fail to serve children with mental health needs
even though the federal statutory language does not exclude them
in any way and makes the option available to any child with a disability.
Finally, Medicare and Medicaid, the public health
safety net, provide unequal services to individuals with mental
health needs. Medicare reimburses a much lower percentage of mental
health care costs than physical health care costs. Medicaid also
fails to meet the needs of individuals with mental illness. States
do not include needed mental health services in their Medicaid plans.
When individuals enter jails and prisons because of a lack of services
in the community, their Medicaid coverage is immediately terminated
in every state, despite federal law which allows states to suspend
coverage and thus, facilitate reentry into the community upon discharge.
Under the Early Periodic Screening Diagnosis and Treatment program
mandating necessary services for children, few states provide an
adequate mental health screening tool for children and studies indicate
that large percentages of children are not screened at all. Federal
law does not require states to report on mental health screening
rates or ensure that an adequate mental health screening tool is
used.
All three means of health care coverage--public, private
and bridge programs--create barriers to the receipt of mental health
care. These barriers have led to the current national crisis, with
individuals with severe mental health needs increasingly relying
on emergency room care, prisons, and jails to fill the gap. Congress
must act to remove those impediments and redress the longstanding
discrimination against individuals with mental illness which can
only be explained by ignorance and stigma.
NCD reiterates the concern expressed in From Privileges
to Rights that to assure that parity laws do not make it easier
to force people into accepting "treatments" they do not want, it
is critical that these laws define parity only in terms of voluntary
treatments and services.
IMPROVE VOCATIONAL REHABILITATION (VR) SERVICES:
Individuals with severe mental illnesses would like the option to
seek VR services directly from private programs with proven track
records in providing effective services, bypassing ineffective,
VR bureaucracies. A variety of approaches could be considered, such
as providing vouchers that would permit individuals to purchase
services from a range of programs meeting quality standards.
The Ticket to Work and Work Incentives Improvement
Act is a step in this direction because it authorizes the Social
Security Administration to provide vouchers that allow consumers
on SSI and SSDI to select their own training and placement provider.
The ticket pays private providers over a 60-month period, so long
as the individual stays off cash benefits, thereby creating strong
incentives for providers to offer ongoing, flexible supports and
services designed to keep individuals in jobs. However, to benefit
from this program individuals must have been receiving federal disability
benefits and must be able to work full time. Other individuals with
disabilities could also benefit from psychiatric rehabilitation
services, yet there is no program for them under the Rehabilitation
Act.
ESTABLISHING A RIGHT TO MENTAL HEALTH DISCHARGE
PLANNING PRIOR TO RELEASE FROM JAIL OR PRISON
A national strategy is needed to stop the revolving
door for inmates with mental illnesses.
Establishing a right to discharge planning under federal
law would have a far greater impact than a series of state decisions,
however valuable. Establishing a right to discharge planning is
only one step toward ending the harmful, often cyclic, incarceration
of people with mental illnesses.
Efforts are also underway to reconnect former inmates
with federal benefit programs like Supplemental Security Income
and Medicaid, so that they have some income, health care and medication
benefits to help them transition successfully back to the community.
(66)
PROVIDE ADEQUATE FUNDING FOR ENFORCEMENT OF THE
ADA, IDEA, FAIR HOUSING ACT AND OTHER CIVIL RIGHTS LAWS AFFECTING
PEOPLE WITH PSYCHIATRIC DISABILITIES: Government civil rights
enforcement agencies and publicly-funded advocacy organizations
should work more closely together and with adequate funding to implement
effectively critical existing laws like the Americans with Disabilities
Act, Fair Housing Act, Civil Rights of Institutionalized Persons
Act, Protection and Advocacy for Individuals with Mental Illness
Act, and Individuals with Disabilities Education Act, giving people
labeled with psychiatric disabilities a central role in setting
the priorities for enforcement and implementation of these laws.
CHAPTER
7
An Inter-Generational
Vision for Effective Mental Health Services and Supports
As outlined in Chapters 3, 4, and 5, the fragmentation
of the public mental health system has had a devastating impact
on children, youth, adults and seniors with mental illnesses. And
the disconnects between systems of care serving each of these populations
have exacerbated these impacts further. Children and youth with
severe emotional disturbance who do not get early screening and
preventive services are more likely to find themselves poor and
dependent on an adult mental health system that does not serve their
needs. Unserved adults are likely to become unserved seniors.
Fundamental reform will require new thinking about
how systems of care can invest--over a lifetime, if necessary--in
adequate mental health services and supports that will allow children
to live successfully with their families in the community, and will
allow adults and seniors to seek recovery from the effects of mental
illnesses and to achieve economic self-sufficiency.
Expanding the Resource Base
While there is no question that additional resources
are needed to address America's mental health needs, policy makers
must be educated about the "penny-wise and pound-foolish" manner
in which mental health services and supports are currently delivered.
As outlined in Chapters 1 and 2, the inability of the public mental
health system to deliver preventive services and supports often
leads people with mental illnesses into more restrictive and less
humane settings, such as jails and prisons, homeless shelters and
state hospitals. But that approach is substantially more expensive
overall.
The Supreme Court's Olmstead decision also
demonstrates how funds can be recaptured from unnecessary institutionalization.
Recently, there has been renewed emphasis on reducing the use of
long-term hospital care, especially for people with the most severe
mental illnesses. (67)
Improved community treatments, such as psychiatric
rehabilitation, consumer peer support and intensive case management
programs, have become more widely available. Helping to fuel this
movement are continuing concerns over the relative ineffectiveness
and therapeutic limitations of inpatient care, including the dependencies
it creates, and the fact that community care is generally no more
expensive than institutional care.
Ironically, as a society, we may be paying much more
for an ineffective patchwork of programs than we would for a comprehensive
set of preventive services and supports. The cost of emergency hospitalization
in a private hospital in an urban setting can be over $1000/day.
So-called "residential treatment programs" can cost as much as $750/day.
At $350/day, even state psychiatric hospital care is quite expensive.
People with mental illnesses who find themselves in state prisons
or local jails cost taxpayers over $100/day, and homeless shelters
impose a similar tax burden. By comparison, proven models like supportive
housing (68) cost much less, while
providing many more opportunities for community integration.
The challenge here is to convince federal and state
policymakers to adopt a longer budgetary view, and one that captures
all of the costs of neglecting the public mental health system and
the pressing needs of its consumers. A few communities have attempted
such dramatic restructuring, with promising results. For instance,
Vermont has secured a "Medicaid 1115 Waiver" to allow it to provide
flexible and comprehensive services and supports through its Community
Rehabilitation and Treatment (CRT) program, and has devoted state
funding to provide housing and other services not reimbursable under
Medicaid. As a consequence, each of the 3,200 adults in the CRT
program has access to a broad range of supports that are tailored
to his or her specific needs. (69)
Similarly, in Los Angeles, the Village Integrated
Services Agency is a comprehensive program for people with serious
mental illnesses (clients are called members at the Village). The
Village offers an array of options for members which supports individualized
services in all quality of life areas (i.e. employment, housing,
social, substance abuse, etc.). Staff focus on encouraging members'
free choice of any menu option at any time.
(70)
Federal resources to support the expansion of community
services required under Olmstead are available to states
from several sources, including Medicaid's optional services for
adults:
- targeted case management and rehabilitation;
- Medicaid coverage for services furnished in small
community residential programs of fewer than 16 beds;
- Medicaid's array of comprehensive community services
for children, mandated through the Early and Periodic Screening,
Diagnosis and Treatment requirement of the law;
- Medicaid Home- and Community-Based Care Services
Waiver; and
- expanding Medicaid eligibility through various
options and waivers of federal rules--home- and community-based
service waivers (Section 1915(c) of the Social Security Act),
research and demonstration waivers (Section 1115), the option
to cover people who are medically needy under Medicaid, and coverage
of children with emotional disabilities under the "Katie Beckett"
option (Section 1902(e)(3)).
Despite the availability of such funding, many states
have elected not to apply. (71)
States also have the authority to allow certain health
care providers to "presumptively" enroll children in Medicaid who
appear to be eligible based on their age and family income. This
can be done based on the family's declaration that its income is
below the state's Medicaid income-eligibility guidelines. The child
can then be provisionally enrolled in Medicaid and begin to receive
services, while a full Medicaid application with the necessary information
is prepared and submitted (this must be done by the end of the following
month). States that fail to cover all eligible children, adults
and seniors under Medicaid are losing the opportunity to secure
federal matching funds for the home- and community-based services
these people need.
Improving Access and Reducing Barriers to Securing
Supports, Services, Treatment
Because cost of services is the most significant
problem facing poor people with mental illnesses, expanding Medicaid
eligibility and reimbursable services--concrete steps available
to every state--are the most significant steps that can be taken
to improve access to mental health services and supports for children,
adults and seniors. The federal Medicaid program provides matching
funds for such efforts, but many states experiencing budget shortfalls
are loath to increase their own contributions, even when these leverage
federal funds at very favorable levels.
The Surgeon General has outlined a program of action
for improving access and reducing barriers for people of color and
language minorities. These focus on coordinating early intervention
and care to "vulnerable, high-need groups.... It is not enough to
deliver effective mental health treatments: Mental health and substance
abuse treatments must be incorporated into effective service delivery
systems, which include supported housing, supported employment,
and other social services." (72)
Barriers caused by geography are more difficult to
address. Many rural areas simply lack the infrastructure to provide
even basic mental health services and supports to any population.
Rural practitioners are focusing more attention on integrating mental
health services into traditional family practices, and on the use
of telemedicine. (73)
Promoting Recovery
Today, unfortunately, the services and supports available
to most people with serious mental illnesses are neither sufficient
nor recovery-oriented. They are designed primarily to reduce the
most obvious symptoms, minimizing the need for expensive hospitalization
but promising little more. Driven at least in part by low expectations,
these stopgap services rarely aim at promoting independence, gainful
employment and fulfilling relationships--goals we all seek. And
even these services are in extremely short supply, depriving many
consumers of the only help, however inadequate, that might enable
them to avoid unemployment, homelessness or contact with the criminal
justice system.
But we have to avoid the temptation of defining success
as the mere reduction of people with mental illnesses who are unemployed,
homeless or in jail. Clearly, people who have been diagnosed with
mental illnesses seek more than just abatement of their symptoms.
They also want and deserve an opportunity to succeed in the community.
What is most needed is a new vision that promotes the goal of recovery
from mental illness, rather than the view that mental illnesses
are lifelong afflictions that need to be managed. Just as the national
"welfare reform" debate pushed the country to conceive of a new
way to move families from dependence to independence, the mental
health community needs to rethink how resources can be allocated
to promote independence of people with mental illness diagnoses.
Conclusion
Thirty years ago, the nation decried conditions on
the back wards of state psychiatric hospitals, which were often
referred to as "snake pits," in which people with psychiatric disabilities
were "warehoused" rather than helped to recover. Since then, through
years of litigation, research and experience, public mental health
systems have developed innovative models to support people with
psychiatric disabilities in integrated settings in the community.
But lack of visionary leadership and inadequate funding have prevented
these models from "going to scale" in order to serve more people.
Instead, many public mental health systems are stuck
in neutral gear, content that people with psychiatric disabilities
will be "maintained" in the community, rather than supported in
their recovery and helped on the road to economic self-sufficiency.
In other words, the aspirations of many public mental health systems--as
measured by actual programmatic and financial commitments rather
than rhetoric--has not, for most people with psychiatric disabilities,
changed much in 30 years. Instead of being warehoused on back wards
of hospitals, many people with psychiatric disabilities today are
warehoused in homeless shelters, jails and prisons and other isolated
and segregated settings throughout our communities.
What is most needed now is a dramatically new vision
of what people with psychiatric disabilities can achieve, if given
the supports they need to succeed. That vision must start with the
premise that recovery is possible and ought to be seen as an objective
for every person with a psychiatric disability. The vision must
also incorporate the principles of the ADA and the Supreme Court's
Olmstead decision, which declared that the unnecessary institutionalization
of people with disabilities is a form of discrimination and that
each state has an affirmative duty to move people with psychiatric
disabilities out of isolated and segregated programs (whether in
hospitals or in the community) and into settings where they are
truly integrated into community life. A final component of this
new vision will require a commitment to fund effective supports
and services and to fund enforcement of the rights guaranteed under
the ADA, IDEA, Medicaid and other federal statutes.
The Federal Government can play an important role
in establishing funding and other incentives for state mental health
systems to adopt new models that support this vision and that are
consistent with Olmstead and President Bush's New Freedom
Initiative.
Appendix
Mission of the National Council
on Disability
Overview and Purpose
The National Council on Disability (NCD) is an independent
federal agency with 15 members appointed by the President of the
United States and confirmed by the US Senate. The overall purpose
of NCD is to promote policies, programs, practices, and procedures
that guarantee equal opportunity for all individuals with disabilities,
regardless of the nature or significance of the disability, and
to empower individuals with disabilities to achieve economic self-sufficiency,
independent living, and inclusion and integration into all aspects
of society.
Specific Duties
The current statutory mandate of NCD includes the
following:
- Reviewing and evaluating, on a continuing basis,
policies, programs, practices, and procedures concerning individuals
with disabilities conducted or assisted by federal departments
and agencies, including programs established or assisted under
the Rehabilitation Act of 1973, as amended, or under the Developmental
Disabilities Assistance and Bill of Rights Act, as well as all
statutes and regulations pertaining to federal programs that assist
such individuals with disabilities, in order to assess the effectiveness
of such policies, programs, practices, procedures, statutes, and
regulations in meeting the needs of individuals with disabilities.
- Reviewing and evaluating, on a continuing basis,
new and emerging disability policy issues affecting individuals
with disabilities at the federal, state, and local levels and
in the private sector, including the need for and coordination
of adult services, access to personal assistance services, school
reform efforts, and the impact of such efforts on individuals
with disabilities, access to health care, and policies that act
as disincentives for individuals to seek and retain employment.
- Making recommendations to the President, Congress,
the Secretary of Education, the director of the National Institute
on Disability and Rehabilitation Research, and other officials
of federal agencies about ways to better promote equal opportunity,
economic self-sufficiency, independent living, and inclusion and
integration into all aspects of society for Americans with disabilities.
- Providing Congress, on a continuing basis, with
advice, recommendations, legislative proposals, and any additional
information that NCD or Congress deems appropriate.
- Gathering information about the implementation,
effectiveness, and impact of the Americans with Disabilities Act
of 1990 (42 U.S.C. 12101 et seq.).
- Advising the President, Congress, the commissioner
of the Rehabilitation Services Administration, the Assistant Secretary
for Special Education and Rehabilitative Services within the Department
of Education, and the director of the National Institute on Disability
and Rehabilitation Research on the development of the programs
to be carried out under the Rehabilitation Act of 1973, as amended.
- Providing advice to the commissioner of the Rehabilitation
Services Administration with respect to the policies and conduct
of the administration.
- Making recommendations to the director of the National
Institute on Disability and Rehabilitation Research on ways to
improve research, service, administration, and the collection,
dissemination, and implementation of research findings affecting
persons with disabilities.
- Providing advice regarding priorities for the activities
of the Interagency Disability Coordinating Council and reviewing
the recommendations of this council for legislative and administrative
changes to ensure that such recommendations are consistent with
NCD's purpose of promoting the full integration, independence,
and productivity of individuals with disabilities.
- Preparing and submitting to the President and Congress
an annual report titled National Disability Policy: A Progress
Report.
International
In 1995, NCD was designated by the Department of State
to be the U.S. government's official contact point for disability
issues. Specifically, NCD interacts with the Special Rapporteur
of the United Nations Commission for Social Development on disability
matters.
Consumers Served and Current Activities
Although many government agencies deal with issues
and programs affecting people with disabilities, NCD is the only
federal agency charged with addressing, analyzing, and making recommendations
on issues of public policy that affect people with disabilities
regardless of age, disability type, perceived employment potential,
economic need, specific functional ability, veteran status, or other
individual circumstance. NCD recognizes its unique opportunity to
facilitate independent living, community integration, and employment
opportunities for people with disabilities by ensuring an informed
and coordinated approach to addressing the concerns of people with
disabilities and eliminating barriers to their active participation
in community and family life.
NCD plays a major role in developing disability policy
in America. In fact, NCD originally proposed what eventually became
the Americans with Disabilities Act. NCD's present list of key issues
includes improving personal assistance services, promoting health
care reform, including students with disabilities in high-quality
programs in typical neighborhood schools, promoting equal employment
and community housing opportunities, monitoring the implementation
of the ADA, improving assistive technology, and ensuring that those
persons with disabilities who are members of diverse cultures fully
participate in society.
Statutory History
NCD was initially established in 1978 as an advisory
board within the Department of Education (P.L. 95-602). The Rehabilitation
Act Amendments of 1984 (P.L. 98-221) transformed NCD into an independent
agency.
NOTES
1. Vermont has secured a "Medicaid
1115 Waiver" to allow it to provide flexible and comprehensive services
and supports through its Community Rehabilitation and Treatment
(CRT) program, and has devoted state funding to provide housing
and other services not reimbursable under Medicaid. As a consequence,
each of the 3,200 adults in the CRT program has access to a broad
range of supports that are tailored to his or her specific needs.
See Department of Developmental & Mental Health Services, DESCRIPTION
OF PROGRAMS AND SERVICES, at http://www.state.vt.us/dmh/
2. The term "public mental health
system" refers to the system(s) of care in a state that serves individuals
and families that are poor. The public mental health system provides
more than half of all funding for mental health services in America.
While for health care, private insurance is a major payer, the private
system contributes only 46 percent for mental health, and its role
is shrinking. See Health Care Plan Design and Cost Trends: 1988
through 1997, The Hay Group, Washington, D.C. 1998. This paper focuses
solely on the public systems charged with providing mental health
care and supports to poor people.
3. 3 See, e.g., Bazelon
Center for Mental Health Law, Disintegrating Systems: The State
of States' Public Mental Health Systems (December 2001); Abigail
Trafford, "Second Opinion: Writing Off Depression," The Washington
Post, Tuesday, January 1, 2002; Page HE01.
4. See, e.g.,Criminal Justice
/ Mental Health Consensus Project, at http://www.consensusproject.org/
. "Life on the Outside," All Things Considered, May 30, 2000,
available at http://www.npr.org/ramfiles/atc/20000530.atc.06.rmm
(Cook County Jail is Illinois' biggest mental health facility).
5.
344 F.Supp. 387, 391 (M.D. Ala.1972), aff'd sub nom.
Wyatt v. Aderholt, 503 F.2d 1305 (5th Cir. 1974).
6. Where to Turn: Confusion
in Medicaid Policies on Screening Children for Mental Health Needs,
Bazelon Center for Mental Health Law, 1999.
7. The Center for Mental Health
Services' Community Mental Health Services Block Grant awards grants
to the States to provide mental health services to people with mental
disabilities. Through the Community Mental Health Services Block
Grant, a joint Federal-State partnership, CMHS supports existing
public services and encourages the development of creative and cost-effective
systems of community-based care for people with mental disabilities.
With the current changes in the health care delivery system, improving
access to community-based systems is especially important. See http://www.mentalhealth.org/publications/allpubs/
KEN 95-0022/default.asp.
8. Note: State spending figure
includes state and local appropriations for mental health and excludes
the federal match for Medicaid, the federal mental health block
grant, first- and third-party payments and other non-state sources.
Lutterman, T., Hirad, A. and Poindexter, B., Funding Sources
and Expenditures of State Mental Health Agencies, Fiscal Year 1997,
National Association of State Mental Health Program Directors Research
Institute, Inc. Alexandria, VA. 1999, Table 23.
9. Id.
10. National Council on Disability,
From Privileges to Rights: People Labeled with Psychiatric Disabilities
Speak for Themselves, available at http://www.ncd.gov/newsroom/publications/privileges.html#5,
at Chapter 5;
Bryant, E. S., Rivard, J. C., Addy, C. L., Hinkle,
K. T., Cowan, T. M., & Wright, G. (1995). Correlates of major
and minor offending among youth with severe emotional disturbance.
Journal of Emotional and Behavioral Disorders, 3 (2), 76-84.
11. Mental Health Needs Of Many
U.S. Children Going Unmet, available at
http://www.pslgroup.com/dg/4D1FA.htm
.
12. See, e.g., Children's Defense
Fund, Quick Facts: Mental Health and Juvenile Justice (CDF), at
http://www.childrensdefense.org/ss_jjfs_menthlthjj.php
13. The U.S. Supreme Court stated
that individuals have such a right unless the state can show that
implementation would be a fundamental alteration. Olmstead v. L.C.,
119 S.Ct. 2176, 2188 (1999).
14. Children also have rights
under the Individuals with Disabilities Education Act (IDEA), including
the right to services in the least restrictive setting appropriate
for the child. See, generally, Bazelon Center for Mental Health
Law, Olmstead Planning for Children
with Serious Emotional Disturbance: Merging System
of Care Principles with Civil Rights Law, available at http://www.bazelon.org/olmsteadchildren2.pdf
15. 42 U.S.C. ยง1396d(a).
16. Social Security Act, Section
1905(r)(5). See also, Omnibus Budget Reconciliation Act, 1989, Public
Law 101-239.
17. http://www.hcfa.gov/medicaid/trends98.pdf
18. Stroul, B. A., Pires, S.
A., Armstrong, M. I., and Meyers, J. C. (1998). The impact of managed
care on mental health services for children and their families.
The Future of Children: Children and Managed Health Care,
8, 119-133.
19. Bazelon Center for Mental
Health Law, Relinquishing Custody, The Tragic Result of Failure
to Meet Children's Mental Health Needs. (Mar. 2000).
20. Little Hoover Commission,
Young Hearts & Minds: Making a Commitment to Children's Mental
Health, at iv (Report #161, October 2001), available at http://www.lhc.ca.gov/lhcdir/report161.html.
21. Id.
22. For example, to qualify for
special education, the child's mental disability must affect educational
performance to a marked degree and over a long period of time. The
child must also exhibit one or more of the following characteristics:
- an inability to learn that cannot be explained
by intellectual, sensory or health factors;
- an inability to build or maintain satisfactory
interpersonal relationships with peers and teachers;
- inappropriate types of behavior or feelings under
normal circumstances;
- a general pervasive mood of unhappiness or depression
; or
- a tendency to develop physical symptoms or fears
associated with personal or school problems.
23. The Kaiser Commission on
the Future of Medicaid. Medicaid's role for children. Medicaid
Facts. Washington, DC (1997)
24. Bazelon Center for Mental
Health Law, Managed Behavioral Health Care for Children and Youth:
A Family Advocate's Guide (1996).
25. Jane Knitzer first identified
the problem in a ground-breaking 1978 study and elaborated on it
in a 1982 publication, Unclaimed Children: the Failure of Public
Responsibility to Children and Adolescents in Need of Mental Health
Services. Several later studies confirm Knitzer's findings.
- The Research and Training Center on Family Support
and Children's Mental Health found that 25 percent of parents
whose children have emotional disturbance received suggestions
that they relinquish custody. One third of those parents receiving
the suggestion gave up custody in order to get services.
- The Commonwealth Institute for Child and
Family Studies conducted a survey of 45 states. In 28 states (62
percent), at least one agency used custody transfer to gain access
to state funding for services for children with serious emotional
and behavioral problems. Thirty-eight (32 percent) of the responding
child-serving agencies used custody transfer to obtain funding
for children's treatment (26)
26. See n. 15, above.
- The National Alliance for the Mentally Ill surveyed
parents of children with mental and emotional disabilities and
found nearly one-fourth of them had been told by public officials
that they needed to relinquish custody to get needed services
for the children.
27. Ruth Goldman, Model Mental
Health Programs and Educational Reform, American Journal of Orthopsychiatry,
(1997) p. 347.
28. ABC Project, Staying in
School: Strategies for Middle School Students with Learning and
Emotional Disabilities (1995), at p. 1: "Nationally, 35 percent
of students with learning disabilities and 55 percent of students
with emotional disabilities drop out of school as compared to about
25 percent of students without disabilities.
29. Among the most recognized
of these techniques are to:
- Personalize instruction through accommodating different
learning styles and abilities;
- Create leadership opportunities for less-popular
students (such as appointing as class helpers);
- Give student alternatives such as self-imposed
time-outs, relaxation techniques; and
- Try to eliminate conditions that lead to
reactive misbehavior (such as teasing from other students)
(30)
30. UCLA Mental Health Project,
B ehavior Problems: What's a School to Do?, in Addressing
Barriers to Learning, Vol. 2, No. 2, (1997) p. 2.
31. Id. at 5.
32. "Proposal to Preserve the
Family," Associated Press, The Wenatchee (Alabama) Daily
World, May 24, 1993.
33. Mental Health Law Project
(now Bazelon Center for Mental Health Law), The R. C. Case: Creating
a New System of Care for Children, 1991.
34. Firman, C., On Families,
Foster Care, and the Prawning Industry, Family Resource Coalition
Report, No. 2, 1993.
35. Cocozza, J. J. (Ed.) Responding
to Youth With Mental Disorders in the Juvenile Justice System. Seattle,
WA, The National Coalition for the Mentally Ill in the Criminal
Justice System, 1992.
36. Garfinkel, Lili F., Unique
Challenges, Hopeful Responses: A Handbook for Professionals Working
with Youth with Disabilities in the Juvenile Justice System, PACER
Center, 1997.
37. 1999 National Report Series,
Juvenile Justice Bulletin.
38. "Special Education in Correctional
Facilities," by the National Center on Education, Disability and
Juvenile Justice (1990). Available at http://edjj.org/Publications/pub05_01_00.html.
39. Almost always for want of
special education services, 55 percent of children with emotional
disturbance drop out--more than twice the rate of other students
in the general population. Nearly 20 percent of students with emotional
disturbance have been arrested, compared with an arrest rate of
nine percent for all students with disabilities. As these children
age and leave school without adequate preparation or skills, the
arrest rate climbs. Of youngsters with emotional disturbance out
of school for two years--more than a third had been arrested. By
the time they had been out of school for five years, more than 70
percent had been arrested.
40. U.S. Department of Health
and Human Services. Mental Health: A Report of the Surgeon General
(1999), at Chapter 3.
41. Id.
42. Hyde, K. L., Burchard, J.
D. & Woodworth, K. (1996). Wrapping services in an urban setting.
Journal of Child and Family Studies, 5, 67-82; Yoe, J. T.,
Santarcangelo, S., Atkins, M. & Burchard, J. D. (1996). Wraparound
care in Vermont: Program development, implementation, and evaluation
of a statewide system of individualized services. Journal of
Child and Family Studies, 5, 23-38.
43. 41 See, e.g.,
Culhane, Dennis,
Comparing The Relative Effectiveness Of Transitional vs. Supported
Housing For Single Persons With Severe Mental Disabilities Exiting
Homelessness; Culhane, Dennis, The Public Costs Of Homelessness
Versus Supported Housing In New York City: Assessing The Differential
Impact On NYS Medicaid-Funded Services, Veterans Administration
Programs, The Health And Hospitals Corporation, New York State Psychiatric
Hospitals, And The New York State Dept. Of Corrections; Corporation
for Supportive Housing, The New York/New York Agreement Cost
Study: The Impact of Supportive Housing on Services Use for Homeless
Mentally Ill Individuals.
44. National Association of State
Mental Health Program Directors, State Mental Health Agency Profile
System Highlights: Closing and Reorganizing State Psychiatric Hospitals:
1996. NASMHPD, Alexandria, VA 1997.
45. McGrew, J. H., Wright, E.
R., & Pescosolido, B. A., Closing of a state hospital: An overview
and framework for a case study. Journal of Behavioral Health
Services & Research, 26:3 August 1999, 236-245.
46. There have also been recent
efforts to rebuild state psychiatric hospitals in Montana and the
District of Columbia, two jurisdictions whose community mental health
systems have consistently failed adults with mental illnesses.
47. Mental Health: Culture,
Race, and Ethnicity: A Supplement to Mental Health: A Report of
the Surgeon General, available at
http://www.surgeongeneral.gov/library/mentalhealth/cre/default.asp
48. National Coalition for the
Homeless and National Law Center on Homelessness and Poverty, Illegal
to be Homeless: The Criminalization of Homelessness in the United
States (January 2002).
49. Ditton, P.M. (1999). Mental
health and treatment of inmates and probationers (Bureau of Justice
Statistics, NCJ-174463, p.5). Washington, DC: U.S. Department of
Justice.
50. Id. at 7.
51. Id. at 6.
52. Id.
53. Id.
54. Inmates with mental illnesses
tend to have a history of more significant problems when compared
with other inmates. Many lead chaotic lives. The DOJ report found
that: More than three quarters of inmates with a mental illness
had at least one prior prison, jail or probation term; twenty percent
of inmates were homeless in the 12 months prior to arrest, compared
to 8.8 percent of other inmates; inmates with a mental illness were
less likely to be employed in the month before the arrest; 37.7
percent in federal prisons were unemployed, compared with 27.5 percent
of inmates who did not have a diagnosis of mental illness; and inmates
with a mental illness are more likely to reflect one or more of
the factors that put people at risk, such as growing up in foster
care, living with a substance-abusing parent, or being physically
or sexually abused.
55. Until litigation was commenced
against it, New York City fought the obligation to provide discharge
planning in court (Brad H. v. City of New York). The city
would drop inmates released from Rikers Island at a toll plaza in
the middle of the night with $1.50 and two subway tokens. People
who took medication while incarcerated are released without a supply
to carry them until they can obtain and fill a prescription. No
one ensures that they have access to public benefits such as SSI
and Medicaid, which they could use to obtain housing and mental
health treatment. Currently, however, the city has adopted a special
program where inmates diagnosed with mental illnesses who are discharged
from jail can have their medications subsidized until they are able
to re-establish Medicaid benefits.
56. A 1997 study revealed that
only 20 percent of jails nationwide engage in discharge planning.
This means that most former inmates with serious mental illnesses
enter a void when they walk out of the correctional facility. It
is no wonder that the recidivism rate among people with mental illnesses
is extremely high. An effective discharge plan is crucial to the
successful re-entry into the community of an inmate with a serious
mental illness. Case managers who initiate the appropriate process
prior to the inmate's release must also be able to follow up afterwards
to make sure the individual has in fact received benefits and services.
57. Heather Barr, Mental Health
Courts: An Advocate's Perspective, available at the "Mental
Health" tab, at http://www.urbanjustice.org/publications/index.html.
58. National Council on Disability,
From Privileges to Rights: People Labeled with Psychiatric Disabilities
Speak for Themselves (January 20, 2000).
59. Vitek v. Jones, 445 U.S.
480, 491-492 (1980)("We have recognized that for the ordinary citizen,
commitment to a mental hospital produces a massive curtailment of
liberty."); Addington v. Texas, 441 U.S. 418, 425, 99 S.Ct. 1804,
1809, 60 L.Ed.2d 323 (1979)(because of the consequences, a person
with mental illness cannot be committed without due process of law).
60. Mental health spending in
Medicare, Medicaid and other federal programs has grown more slowly
than overall program spending. Mental Health: A Report of the Surgeon
General, 1999, p. 417. Medicare law also limits the program's effectiveness
in meeting the needs of enrollees with mental and emotional disabilities.
Medicare requires beneficiaries to pay 50 percent of the cost of
outpatient mental health treatment, but only 20 percent of other
outpatient services. Medicare also provides no coverage for services
that are critical for individuals with serious mental illness (case
management, psychiatric rehabilitation and medication) and imposes
a discriminatory lifetime limit of 190 days on coverage for care
in a psychiatric hospital.
61. Lombardo, N. E. (1994). Barriers
to mental health services for nursing home residents. Washington,
DC: American Association of Retired Persons Policy Institute.
62. Center for Health Care Strategies,
An Analysis of Olmstead Complaints: Implications for Policy and
Long-Term Planning (2001), available at http://www.chcs.org/publications/pdf/cas/olmsteadcomplaints.pdf.
The report does not distinguish between seniors and younger adults
living in nursing homes.
63. The bill adds the words "inpatient
psychiatric hospital services for individuals under 21" to the waiver
language. This phrase is defined in the Medicaid statute to include
any facilities that the Secretary of HHS includes in regulations.
HHS has promulgated a regulation which includes residential treatment
facilities as inpatient psychiatric services for individuals under
21, if the facilities meet certain criteria.
64. National Mental Health Association
and GAINS Center, Justice For Juveniles: How Communities Respond
To Mental Health And Substance Abuse Needs Of Youth In The Juvenile
Justice System. Executive summary available at http://www.nmha.org/children/justjuv/execsum.cfm
65. Bazelon Center for Mental
Health Law, A New Vision of Public Mental Health: A Model Law
to Provide a Right to Mental Health Services and Supports, available
at
http://www.bazelon.org/newvisionofpublichealth.html.
66. See Bazelon Center for Mental
Health Law, Finding the Key to Successful Transition from Jail
to the Community: An Explanation of Federal Medicaid and Disability
Program Rules (2001).
67. Kamis-Gould, E., Hadley,
T. R., Rothbard, A. B., et al: A framework for evaluating the impact
of state hospital closing. Administration and Policy in Mental
Health 1995: 22:497.
68. See, e.g., Sam Tsemberis
and Ronda F. Eisenberg, "Pathways to Housing: Supported Housing
for Street-Dwelling Homeless Individuals With Psychiatric Disabilities,"
51 Psychiatric Services 487-493 (2000); Houghton, The
New York/New York Agreement Cost Study: The Impact of Supportive
Housing on Services Use for Homeless Mentally Ill Individuals,
Corporation for Supportive Housing (May 2001), available at http://www.csh.org/NYNYSummary.pdf
.
69. See Department of Developmental
& Mental Health Services, DESCRIPTION OF PROGRAMS AND SERVICES,
at http://www.state.vt.us/dmh/
70. http://www.village-isa.org/
71. See Bazelon Center for Mental
Health Law, Under Court Order: What the Community Integration
Mandate Means for People with Mental Illnesses, available at
http://www.bazelon.org/undctord.pdf.
72. Mental Health: Culture, Race,
And Ethnicity: A Supplement to Mental Health: A Report of the Surgeon
General (2001), available at http://www.surgeongeneral.gov/library/mentalhealth/cre/execsummary-6.html.
73. See National Association
for Rural Mental Health Web site, at http://www.narmh.org/. |