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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.

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