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Ensuring Community Membership:
How Our Work Makes a Difference & What Challenges We Face
Three decades ago, the Bazelon Center’s original mission
was, first, to protect the rights of people with mental disabilities
who suffered outrageous abuses behind the locked doors of state
institutions, then to enable them to receive, instead, mental health
services and other supports needed for meaningful community membership.
In many ways we succeeded:
• We have been part of a nationwide expansion in advocacy, from primarily
combating the coercive, demeaning and isolating treatment of people
with mental disabilities, to also including a much more positive
approach aimed at recovery, community integration, personal responsibility
and self-sufficiency.
• We played a central role in assuring that people with mental disabilities
were included under the protections of key federal laws: the Americans
with Disabilities Act (ADA), the Individuals with Disabilities
Education Act (IDEA), the Fair Housing Act and Medicaid/Medicare.
•
The Center’s work to defend the ADA was crucial in landmark
Supreme Court decisions such as Olmstead (1999), requiring that
public services for people with disabilities be provided in the
most integrated setting consistent with individual need.
• The Center has worked to make Olmstead, IDEA and Medicaid law serve
as templates for system reform, using impact litigation, policy
analysis and technical assistance to increase their reach and impact
for adults and children with mental disabilities.
• Our work has brought measurable on-the-ground reforms, for instance:
o Converting Alabama’s child welfare system to a national
model that promotes family integrity and minimizes institutional
placements;
o Overhauling California’s process for assuring that people
with mental illnesses are not warehoused in nursing homes and,
through targeted case management, are afforded opportunities for
integrated community living;
o Crafting legislation to establish integrated “systems of
care” for children with serious emotional disorders and to
increase federal funding for this model to more than $100 million
per year; and
o Through litigation and legislative advocacy, promoting a complete
revamp of how people with mental illnesses are assessed and qualified
for SSI and SSDI, making these crucial benefits available to hundreds
of thousands of individuals nationwide.
How Outsiders View the Bazelon Center
A report by outside consultants assisting the Center in strategic
planning affirmed the importance of our work in the eyes of key
stakeholders:
In this dynamic environment, Bazelon plays a role that most
interviewees find to be critical and irreplaceable.
Comments were unequivocal: “ Bazelon
is the only organization that provides comprehensive analysis.” “ It
is the pre-eminent national organization in the field.” “ Bazelon
is an established leader in the mental health community.”
One
funder stated that people know about Bazelon because of “its
cutting edge advocacy work; it is the only organization that does
national level advocacy, litigation, promotion, tackling the huge
issues.”
A government official sees Bazelon as “the
primary legal advocacy resource for policy analysis, especially
from the perspective of consumer and patients’ rights…”
In the words of one interviewee, Bazelon has evolved from an “intensely
antagonistic organization that always threatened court, to an organization
using a more balanced approach to impact systems.”
The Center
is now viewed as expert across ideological lines — “professional,
thoughtful, and reflective on policy,” as another government
official put it — while remaining true to its mission.
The
official viewed Bazelon as a “reliable partner” that
listens to other points of view and develops positions based on
information.
“They have never blindsided me; they are assertive
but constructive and not unduly confrontational.”
One interviewee
specifically referenced Bazelon’s reputation on Capitol Hill,
where staffers on both sides of the aisle look to the Center for
a “reality check.”
Another reinforced the critical
nature of Bazelon’s work in Congress, where it has had a
significant influence on legislative language – “It
would be a loss to the field if the Bazelon Center were not there.”
Despite Gains, a System in Shambles
Today, more than 3.5 million people rely on public mental health
services every year. These systems represent a safety net for people
whose incomes are low or who are uninsured or underinsured, particularly
those with more serious mental disorders. While we can point to
substantial gains, many people with mental illnesses remain socially
and economically marginalized.
• The comprehensive system of community mental health that was to
replace warehousing in state hospitals never materialized as envisioned,
creating a situation where many individuals are routinely punished
by system neglect.
•
The number of beds in state hospitals has dropped from a high of
559,000 in 1955 to around 50,000. Yet during the same period states’ spending
on mental health fell by 30% in inflation- and population-adjusted
dollars.
•
In contrast to the dramatic decline in states’ mental health
funding, spending on criminal justice has soared; between 1990
and 1997, states’ spending on corrections increased by 68%.
During this period, mental health spending increased at less than
half that rate.
• The state of public mental health is such that there is a passive
acceptance of some astonishing norms:
o Almost one in ten people discharged from state hospitals is readmitted
within 30 days and almost one in five is readmitted within 180
days.
o 25% of all homeless people have serious mental illnesses—not
surprising since, rather than a stable living environment, the “community
placement” for many people leaving state hospitals is a homeless
shelter.
o In many mental health systems, adults with serious mental illnesses
have access only to an overloaded case manager, a 15-minute physician
visit every six weeks or so or, when this token treatment fails,
crisis services.
o A recent study found that only 8.6% of recently hospitalized
individuals with schizophrenia were receiving either assertive
community treatment or assertive case management; only 10% of outpatients
were receiving such services.
These clinically- and cost-effective treatment approaches emphasize
such basics as mobile service delivery and a consistent treatment
plan. While it is heartening that states are now phasing in such
services, these models were refined more than 20 years ago.
•
In 2001, the Bazelon Center issued a report entitled Disintegrating
Systems, “attest[ing] to the unraveling of the nation’s
public policy for meeting the needs of people with major mental
illnesses.” In 2002, the President’s New Freedom Commission
on Mental Health echoed our finding, characterizing the nation’s
system for delivering mental health services as being “in
shambles.”
Examples of Our Response to the Perverse Outcomes of Neglect
Failures in social policies for people who rely on public mental
health reflect more than intractable and poorly funded mental health
programs. Although generally states bear the ultimate responsibility
for ensuring access to essential services, many core elements are
dispersed vertically and horizontally across agencies. This dysfunctional
patchwork has resulted in the significant presence of people with
unmet mental health needs in criminal justice and other systems
that were never intended to be major parts of the mental health
service structure. Accountability within and across agencies is
diffuse.
•
Outside of mental health departments—for instance, in housing,
substance abuse, vocational rehabilitation, corrections and physical
healthcare agencies—people with serious mental illnesses
tend to be considered low priority and an unwanted burden.
Vocational Rehabilitation agencies, with financial incentives
to demonstrate good client outcomes, have a long history of concentrating
on relatively easy-to-serve groups, thereby underserving people
with mental illnesses.
A major study found that only 22% of outpatients
with schizophrenia had vocational services prescribed in their
treatment plan or reported
participating in a vocational program.
Lack of such support services is one reason why people with serious
mental illnesses have about a 90% unemployment rate despite the
desire to work expressed by most. The Center is contemplating a
legal remedy relying on the ADA.
•
The state hospital readmission figures do not reflect the 300,000
inmates in federal prisons found by the U.S. Department of Justice
to have serious mental illnesses or the 284,000 adults with serious
mental illnesses who are thrown in jails each year (more often
than not for minor offenses). These settings are cynically described
as “today’s mental institutions.” Half of inmates
who have a mental illness report three or more prior incarcerations.
o The Bazelon Center has crafted class actions challenging the
unwarranted confinement of these individuals and discriminatory
practices relating to early release.
o We have also developed model legislation aimed at reducing recidivism
by ensuring that public benefits (including those relating to mental
healthcare) are available to them upon community reentry.
•
Industries have capitalized on the failures in mental health, developing
political clout to protect their vested interests. For instance,
the Surgeon General reports that residential treatment centers
serve a relatively small proportion of children with serious emotional
disorders (SED) and research has demonstrated only weak evidence
of their effectiveness. Nevertheless, these facilities account
for nearly 25% of the outlay for children’s mental health
nationwide. Decades ago, nursing homes played a major role in reducing
the size of state psychiatric hospitals. Placement of people from
state hospitals into these settings is now regarded as “trans-institutionalization,” yet
the industry has since grown to $92-billion and represents a powerful
political force. It is estimated that almost 30% of nursing home
residents have a mental illness other than dementia; about 7% have
schizophrenia.
o In Illinois, we are part of a class action challenging the state’s
warehousing of between 5,000 and 6,000 individuals consigned to
so-called Institutions for Mental Disease—nursing homes that
have become psychiatric custodial care facilities, thereby not
qualifying for Medicaid reimbursement. Legislation to discontinue
use of these archaic institutions has demonstrated that placing
only about 10% of this population into more integrated settings
would save the state $28 million.
Notwithstanding these cost savings
and residents’ rights under the ADA, as a result of industry
lobbying, such legislation has repeatedly failed.
•
The situation is particularly desperate in children’s services.
Here the U.S. Surgeon General found a “public crisis,” noting
that only one in five children with mental health needs receive
services. As a result, “unmet need remains as high now as
it was 20 years ago.”
o Given that children with serious emotional disorders (SED) have
a legal right to services under the IDEA and, as applicable, Medicaid
law, the Bazelon Center has been working aggressively to vindicate
their rights.
o We have conducted extensive studies of how systems fail to meet
their obligations for early intervention, thereby placing children
identified as having SED at great risk of school dropout (54%)
and arrest (over 74% within five years of dropping out).
o We are working legally, legislatively and through technical assistance
to promote positive behavioral supports, a model of instruction
endorsed by Congress for children with disabilities that is also
beneficial to all students. This strengths-based model has been
shown to reduce disciplinary removals by as much as 50%. We are
particularly promoting implementation of this model through collaborations
between education and children’s mental health systems.
o Through a groundbreaking legal settlement, we achieved broad
reform of Arizona’s mental health system serving 40,000 Medicaid-eligible
children. In New Mexico, we accomplished a similar result through
an aggressive media campaign around a report on the state’s
failed managed mental health care system for children.
o Based on our work in New Mexico, the Center teamed with Congressional
staff to address the large number of children and youth with SED
being held in juvenile detention nationally for lack of access
to scarce community resources.
o The resulting study found that during a six-month period, 15,000
children and youth—some as young as seven—were confined
in juvenile justice settings awaiting mental health services. Some
were being held without any charges against them.
o Incarcerating youth who are waiting for mental health services
is not only damaging to them; it is also wasteful. Investigators
found that this failed policy cost taxpayers almost $100 million
in 2003.
o The Center brought to light the shocking reality that, due to
limits on coverage by commercial insurance of the services needed
by children with SED needed, parents in many states were being
advised to relinquish custody of their children to the state so
the children could qualify for Medicaid and its package of mental
healthcare benefits.
• We published analyses of this problem, worked with media to publicize
it and promoted federal legislation, such as the Keeping Families
Together Act, which would allow parents to buy into Medicaid.
The work described here has been funded by private foundations
and individual donors. If you believe in the goal of community
membership for people with mental disabilities, we urge you to
advance the Bazelon Center continue efforts like these by making
a financial contribution. Here’s
how you can help.
