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Inclusive Livable Communities for People with Psychiatric Disabilities
National Council on Disability
March 17, 2008
National Council on Disability Members and Staff
Members
John R. Vaughn, Chairperson
Chad Colley, Vice Chairperson
Patricia Pound, Vice Chairperson
Milton Aponte, J.D.
Victoria Ray Carlson
Robert R. Davila, Ph.D.
Graham Hill
Marylyn Howe
Young Woo Kang, Ph.D.
Kathleen Martinez
Lisa Mattheiss
Lonnie Moore
Anne M. Rader
Cynthia Wainscott
Linda Wetters
Staff
Michael C. Collins, Executive Director
Martin Gould, Ed.D., Director of Research and Technology
Mark S. Quigley, Director of External Affairs
Julie Carroll, Senior Attorney Advisor
Joan M. Durocher, Senior Attorney Advisor
Sharon M. Lisa Grubb, Special Assistant to the Executive Director
Geraldine Drake Hawkins, Ph.D., Senior Program Analyst
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Secretary
Acknowledgment
The National Council on Disability deeply appreciates the incisive policy research undertaken by Judi Chamberlin and Daniel Fisher of the National Empowerment Center in writing this paper.
Table of Contents
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Executive Summary
I thought my life would be sitting at home smoking cigarettes and drinking coffee, and then I saw an ad in the paper that said they were looking for a director, someone who’s had an experience with mental illness, and it was like, wow! And I met with the board and I just felt I had come home. I love what I do, I love the people I work with. I think it’s karma, serendipitous, that I was supposed to be here.
—Doug DeVoe, Executive Director, Ohio Advocates for Mental Health
The Livable Community Framework
Two reports of the National Council on Disability (NCD), Livable Communities for Adults with Disabilities[1] and Creating Livable Communities,[2] set forth a livable community framework. These reports propose necessary changes in public policies regarding housing; transportation that is reliable and accessible; environments that are physically accessible, including work, education, and health care; and opportunities for participation in social and recreational activities. The intention of such change is to ensure that people with disabilities have all the opportunities and choices available to people without disabilities. All of these elements of change, with the exception of the accessibility of the physical environment, clearly apply to the estimated 24.6 million people with psychiatric disabilities.[3] There is an additional accessibility need for people with psychiatric disabilities: attitudinal barriers continue to prevent people with psychiatric disabilities from full participation, barriers that provide segregated settings and prevent true community integration. To ensure full participation in the community by people with psychiatric disabilities, this report expands NCD’s livable community framework to be fully inclusive.
Major Findings
This section presents summary findings linking elements of the livable community framework to mental health recovery, including descriptions of concrete needs essential to all people with disabilities, such as housing and employment. The summary then moves to a discussion about stigma and discrimination as a major barrier to full participation in society for people with psychiatric disabilities.
Housing: The Key Need
The findings are linked to the element of a livable community that provides affordable, appropriate, accessible housing. Housing is a major element of the livable communities framework. Like people with physical disabilities, people with psychiatric disabilities want to live in mainstream, integrated housing.
To promote recovery and community integration, people with psychiatric disabilities need safe, affordable housing in noncongregate settings, where they can stay as long as they wish, and where they have access to supports of their choice as needed to maintain their community tenure. This model is known as “supported housing.” While most people with psychiatric disabilities no longer live in large state institutions (as a result of the deinstitutionalization movement of the 1960s to 1980s), many are living in congregate housing that often does not meet their housing preferences, and they remain segregated from other people. Other people with psychiatric disabilities are homeless, and some have ended up in jails and prisons.
However, NCD recognizes that different perspectives exist. While some mental health professionals believe that congregate housing linked to mental health services is the best form of housing for people with chronic mental illnesses, the review of available data for this paper revealed other approaches. Not all of the approaches identified in this paper have been widely replicated, yet a growing body of research evidence shows the applicability of several alternative programs, such as supported housing, wherein people choose where they live rather than being required to live in a place because of their disabilities. Supported housing provides information about supports and services available in their communities. The concept of choice involves all segments of the population, including people who have been homeless. For example, a “housing first” approach, which moves people directly from homelessness to their own apartments, is one of the most exciting developments in housing for people with mental illness.
Employment
Employment is another essential element of the livable communities framework. The belief that people with serious mental illnesses cannot work, coupled with a public benefits system that penalizes efforts to maintain employment, has contributed to disproportionate numbers of people with serious mental illnesses being unemployed (compared not only to the general population, but also to people with other kinds of disabilities). The evidence shows that people with mental illnesses can work when they are provided the right mix of services and supports. For people with psychiatric disabilities, this model is called “supported employment.” For many years, the most prevalent kinds of work available to people with psychiatric disabilities has been segregated entry-level work in which they could never earn enough income to live independently. The shift during the 1990s to supported employment for people with psychiatric disabilities has shown that meaningful work must be based on the individual’s skills and preferences, that the supports need to continue on a long-term basis (rather than being time limited), and that people with psychiatric disabilities are capable of working at jobs ranging from entry level to professional and managerial.
Among the innovations that have enabled many people to return to work are self-help programs run and controlled by other people who have recovered from mental illnesses. People in such leadership roles, often called “consumers/survivors,” provide role models, and the programs offer a wide variety of jobs in a supportive setting. Such programs are growing and have shown their efficacy in states that have provided sufficient funding.
Stigma and Discrimination
Visible barriers to the mainstream environment create the main obstacles facing people with many mobility disabilities and prevent their inclusion in the livable communities framework. Although the majority of people with psychiatric disabilities are not hindered by these visible barriers, another barrier that they face—even within the mental health field itself—is no less real: pervasive stigma and discrimination. This is analogous to the sensory, physical, and intellectual barriers faced by people in the physical disability population. As recognized by the latest anti-stigma campaign jointly funded by the U.S. Department of Health and Human Services (HHS) and the Advertising Council (Ad Council), regretfully, stigma and discrimination are prevalent throughout society. People who have recovered from mental illnesses and have first-hand knowledge and involvement with consumer/survivor-run self-help programs need to be included in designing future anti-stigma efforts.
Core Recommendations
Through an expansion of the livable communities framework to include people with psychiatric disabilities, NCD builds upon recommendations in its 2004 and 2006 reports. In this paper, by examining a variety of programs that show promise or have proved successful in achieving community integration for people with psychiatric disabilities, NCD recognizes the need for major changes in public policies to support further efforts for full integration and participation. Five core recommendations summarizing some essential federal-level changes follow.
Core Recommendation One: Congress should ensure that HHS appropriations continue to support anti-stigma campaigns and expand efforts to provide a funding base for self-help programs operated and run by mental health consumers and survivors, analogous to the funding provided under the Rehabilitation Act for operation of independent living centers. Consideration should be given to implementation through HHS/Substance Abuse and Mental Health Services Administration (SAMHSA) reauthorization or other federal mechanisms. Consumers/survivors should be included in the evaluation of ongoing anti-stigma campaigns and the design, development, and expansion of self-help program funding.
Core Recommendation Two: Implement changes in federal and state funding and policy to encourage housing models that are integrated, in accordance with individual choice, and delinked from mandatory health services, while providing ongoing flexible supports. Several federal agencies should examine policies and practices through a partnership effort. The work can begin with congressional action to ensure removal of contradictory or incompatible federal paperwork burdens and policy barriers. Congress should provide the funding needed for initial joint planning and reporting by the Department of Housing and Urban Development (HUD), HHS, and the Social Security Administration (SSA).
Core Recommendation Three: Congress and HUD, HHS, and SSA should work
to change federal and state funding and policy to eliminate the “benefits trap,” which discourages people with psychiatric and other disabilities from working, and to
ensure that work opportunities are available for the full range of jobs, with ongoing flexible supports.
Core Recommendation Four: HHS should be authorized to change Medicaid policy and regulations as implemented by the Centers for Medicare and Medicaid Services (CMS). The agency should examine and consider the merits of existing models; for example, the Michigan state model reframes the definition of “medical necessity” to include “community integration,” and shifts funding to services based on “person-centered planning.” Such changes would allow a broader variety of recovery-oriented services to be eligible for Medicaid funding than is available currently.
Core Recommendation Five: Congress should ask the Government Accountability Office (GAO) to assess and identify indicators of practices that seem to be working in HHS efforts to address cultural and linguistic issues through initiatives like the National Center on Cultural Competence (NCCC). In addition, Congress should allocate funds to expand the NCCC cultural and linguistic competence training model to ensure that as national demographics change, services to people from diverse racial and ethnic groups are provided in ways that meet their self-defined needs.
By ensuring the expansion of the livable communities framework and recommendations to fully include and integrate people with psychiatric disabilities, American society can provide all citizens the opportunity to become part of the American dream. As one participant in a self-help group found,
For many years I felt no hope. It was getting involved in self-help that changed my life; before that, I never felt like a “usual person.” I never had the opportunity to be in an environment where I could feel competent and capable.
—Lenora Kimball, Executive Director, Stepping Stone and the
Next Step Peer Support and Crisis Respite Centers, Claremont,
New Hampshire
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Chapter One: Introduction to Livable Communities for People with Psychiatric Disabilities
In 2004, the National Council on Disability (NCD) issued a comprehensive report, Livable Communities for Adults with Disabilities,[4] which contained a number of specific recommendations to promote the full integration of people with disabilities. The follow-up NCD report in 2006 was Creating Livable Communities.[5] NCD identified six elements that are integral to improving the quality of life for all citizens—including children, youth, and adults—with disabilities. For the promise of full integration into the community to become a reality, people with disabilities need safe and affordable housing; access to transportation; access to the political process; and the right to enjoy whatever services, programs, and activities are offered to all members of the community by both public and private entities. Although the NCD reports addressed people across the full array of disabilities, a main focus of accessibility was on environmental elements that primarily apply more to the “obvious” disabilities than to “hidden” disabilities like many psychiatric disabilities and mental illnesses. Information about the six identified elements of livable communities, other elements, barriers, and promising practices for people with psychiatric disabilities needs to be broadened to achieve all-inclusive communities.
This paper focuses specifically on expanding the livable communities framework and elements to people with psychiatric disabilities and supports full inclusion that leaves out no one. NCD has previously recognized this need for inclusion in its 2000 report, From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves,[6] a paper on mental health status, and a letter to Congress.[7]
The 2004 and 2006 NCD reports present a framework for livable communities for adults with disabilities and federal policy and program examples in action that emphasize livable communities. Grounded in the six identified elements, a livable community
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Provides affordable, appropriate, accessible housing
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Ensures accessible, affordable, reliable, safe transportation
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Adjusts the physical environment for inclusiveness and accessibility
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Provides work, volunteer, and education opportunities
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Ensures access to key health and support services
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Encourages participation in civic, cultural, social, and recreational activities
When the focus shifts specifically to people with psychiatric disabilities, it becomes plain that without expansion this framework is insufficient to ensure the full integration of all people who have disabilities. The main barrier that people with psychiatric disabilities face is that a community that eliminates all the physical environment barriers still may not be fully accessible to people with psychiatric disabilities because of ingrained attitudes toward mental illness. Before people with psychiatric disabilities can even begin to take full advantage of the elements of the livable communities framework, they must be able to surmount an attitudinal barrier.
The attitudinal barrier is exemplified by policies, programs, and beliefs about people with psychiatric disabilities as needing to receive all services within segregated settings in which mental health providers deliver housing, work, education, health care, and support services entirely within the mental health system. Abolishing this attitudinal barrier is necessary to ensure that people with psychiatric disabilities have access to the wider community and all that it may offer.
Fortunately, the mental health field is evolving toward a model based on recovery—the belief that every person diagnosed with a mental illness is capable of living a full life in the community.
In 1999, the U.S. surgeon general issued a comprehensive report on mental health[8] that recognized the value of consumer self-help and consumer-operated services in promoting positive outcomes for people diagnosed with serious mental illnesses.
In 2003, the President’s New Freedom Commission on Mental Health issued its final report.[9] Goal Two of the report recommended a shift toward a system that is consumer- and family-driven, community-based, and that ensures that people diagnosed with mental illnesses have access to the supports and services they need to live integrated lives in the community. The commission found that the current mental health system is fragmented and makes it difficult for people to access housing and employment.
Efforts at the federal level in late 2006 were designed to effect the transformation of the public mental health system through comprehensive reform. The efforts focused on recovery and the reduction and eventual elimination of stigma and discrimination. On December 4, 2006, the Substance Abuse and Mental Health Services Administration (SAMHSA) of the U.S. Department of Health and Human Services (HHS), in partnership with the Advertising Council (Ad Council), launched a national awareness public service advertising (PSA) campaign designed to decrease the negative attitudes that surround mental illnesses and encourage young adults to support their friends who are living with mental health needs.[10] Then-Acting Assistant Surgeon General Rear Admiral Kenneth P. Moritsugu, M.D., M.P.H., told a reporter,
[A] mental illness is not something to be ashamed of. It is an illness that should be treated with the same urgency and compassion as any other illness. And just like any other illness, the support of friends and family members is key to recovery.[11]
Also in December 2006, SAMHSA issued its National Consensus Statement on Mental Health Recovery. The statement defines “recovery” as follows:
[A] journey of healing and transformation enabling a person with a mental health problem to live a meaningful life in a community of his or her choice while striving to achieve his or her full potential.[12]
The Consensus Statement also identified 10 essential elements of recovery, finding that recovery is self-directed, person centered, related to empowerment, holistic, nonlinear, strength-based, involves peer support, requires respect, promotes responsibility, and fosters hope.
Another significant action was the Supreme Court’s 1999 decision in Olmstead v. L.C,[13] in which the Court decided that institutionalizing people when their treating professionals believed they could live safely in the community was a form of discrimination prohibited by the Americans with Disabilities Act (ADA). Although Olmstead has had limited results in actually moving significant numbers of people with mental illnesses out of institutions, it has led to the formation of Olmstead implementation plans in most states and is a valuable tool for advocates in promoting community living.
Terminology
There are a number of terms commonly used to refer to the population described in this paper: “people labeled with psychiatric disabilities,” “people with mental illnesses,” “mental health consumers,” “psychiatric survivors,” and a number of others. Sometimes diagnoses are included, as in “schizophrenics,” “people with bipolar disorder,” and so forth. In this paper, NCD has determined that the terminology used in its 2000 report, “people labeled with psychiatric disabilities,” best captures the identity and experiences of the population. However, because the field uses such a wide diversity of terms, including terms used by people with psychiatric disabilities themselves, this paper will include a variety of terminology used by people quoted herein. The exceptions are editing choices such as removing terms considered detrimental to the community, NCD’s mission, and ensuring the use of “people first” language.
This paper was prepared through an examination of available research and through interviews with 22 key informants. Because the psychiatric research literature often does not include the perspectives of people with psychiatric disabilities themselves, it was deemed necessary to look outside the traditional academic literature and to include organizations of people with psychiatric disabilities and their publications.
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Chapter Two: The Recovery Model and Its Implications
I thought my life would be sitting at home smoking cigarettes and drinking coffee, and then I saw an ad in the paper that said they were looking for a director, someone who’s had an experience with mental illness, and it was like, wow! And I met with the board and I just felt I had come home. I love what I do, I love the people I work with. I think it’s karma, serendipitous, that I was supposed to be here.
—Doug DeVoe, Executive Director, Ohio Mental Health Advocates
What Is the Recovery Model?
The recovery model marks a fundamental change in the way people diagnosed with psychiatric disabilities are viewed. Unlike the medical model, the recovery model was developed by people who themselves had experienced psychiatric disabilities and mental health treatment. Rather than being an academic construct, the recovery model is based on the lived experiences of people who recovered and who recognized that there were valuable lessons to be learned from these experiences—they were not exceptional and could be replicated.
Following are the basic principles of the recovery model:
- Recovery is real and possible for everyone.
- Recovery is the gaining or regaining of valued social roles of the individual’s choice.
- Recovery is not cure.
- Recovery is not symptom reduction as an end in itself.
- Medication may be a tool in people’s recovery, but it is not the focus.
- Recovery is an ongoing journey, facilitated by the right mix of services and supports.
- Recovery has an end point, at which point the individual faces only the “normal problems” experienced by people who have never been diagnosed with a mental illness.
The journey to this point was long and arduous for consumers and advocates working for decades to bring about change. An indication of success was the inclusion of recovery in Transforming Mental Health Care in America, Federal Action Agenda: First Steps as the “single most important goal” for the mental health service delivery system.[14] Demonstration of a change in thinking was attributed to leadership by HHS in partnership with federal, state, local, consumer, advocacy, service provider, private, and nonprofit entities. Another step toward building a more effective public mental health system was the release of a National Consensus Statement on Mental Health Recovery.[15] Other positive steps include looking at promising practices and examining recovery models that seem to be working across the nation.
An Empowerment Model of Development and Recovery[16]
The empowerment model describes how all people go through cycles of development and healing as part of growth. However, life may be interrupted by common traumas (for example, a death in the family, loss of a job or love relationship, natural disaster, and so forth). The person may then move into a cycle of accommodation and adaptation. Trauma can lead to diminished mental functioning and severe distress, which can develop into post-traumatic stress disorder (PTSD).
Empowering interventions, which can include a variety of natural supports and also medical, psychological, and psychiatric treatment, help the person to heal from trauma and to return to the upward spiral of development and healing. For some people, however, because they lack support, severe distress instead can result in the person receiving a diagnosis of mental illness, leading to a loss of social role. At this point, the person enters the cycle of recovery and independent living. A person with a diagnosis of a mental illness often becomes separated from the rest of society and is viewed as experiencing something qualitatively different from the expected cycles of trauma and healing. Once a person has such a diagnosis, it becomes much more difficult, but not impossible, to return to the cycle of accommodation and adaptation, and eventually to the upward spiral of development and healing.
Empowering interventions can take place when the person is in the cycle of recovery and independent living. The essential features of these interventions and how they can be made available to people who have been diagnosed with mental illnesses will be described throughout this paper. Unfortunately, for many people, once they have received a diagnosis of mental illness, they are often viewed as incapable of healing and recovery, making it more difficult for them to return to mainstream life. This entire process will be described more fully in the chapters that follow.
Because the word “recovery” may be interpreted by some people to imply “cure,” it is important to stress that perhaps the closest equivalent terminology in the general disability field is “independent living.” A person who has recovered may (or may not) continue to experience “symptoms,” but these are better seen as normal problems in living. A person who is recovering or has recovered needs an individualized menu of services and supports that help him or her to achieve and maintain the valued social roles of his or her choice. Such supports, especially when an individual is in the latter stages of recovery or has recovered, may come entirely from outside the formal mental health system.
Fulfilling valued social roles is the key element in the recovery model. Every person fills many social roles, such as worker, student, family member, and so forth. When a person is diagnosed with a mental illness, one common result is the loss of social role–the person may leave school; lose his or her job; or lose family, friends, and love relationships. The only social role left to the individual is that of “mental patient,” clearly not a valued role or one that people aspire to attain. The process of recovery, therefore, is one in which the individual is assisted to regain the role(s) he or she has lost, or to move on to new roles of his or her choice.
Recovery and Independent Living
There are powerful parallels between the recovery movement for people with psychiatric disabilities and the independent living movement, which has been primarily for people with more “visible” disabilities (although, as will be described in Chapter Three, many independent living centers also serve people with psychiatric disabilities). The National Council on Independent Living has described the essential elements of independent living as follows:
Consumer choice, autonomy and control define the Independent Living Movement. The independent living philosophy holds that individuals with disabilities have the right to live with dignity and with appropriate support in their own homes, fully participate in their communities, and to control and make decisions about their lives.[17]
Whether one speaks of “recovery” or “independent living,” the principles are the same—personal autonomy, a mix of supports as defined by the individual to assist in the achievement of personal goals, and the full range of opportunities available to people without disabilities to live a full and satisfying life.
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Chapter Three: Housing—The Key Element
Programs or Homes?
It should go without saying that decent, safe, affordable housing is a basic component of successful community living. Yet many people with psychiatric disabilities who are not living integrated lives are housed in programs that restrict their independence. In addition, people with psychiatric disabilities comprise a large segment of the homeless population. Many people with psychiatric disabilities who are poor and living on welfare or disability benefits often cannot afford market-rate housing and have few choices for housing outside of what is offered by the mental health system. Although there are some model programs that provide housing where people are not segregated by disability, the vast majority of mental health housing is congregate and is not the kind of housing people would choose for themselves.
The California Network of Mental Health Clients, a statewide self-help organization, conducted a Board and Care Project and issued a report[18] on that state’s extensive network of private, for-profit group housing, which allowed many board-and-care residents to voice their dissatisfaction. As one participant, Elaine, described,
I lived in two board and cares in the past—the experience was so bad I would do anything—do you understand anything?—to stay out of those places. It was not my choice to live in a board and care . . . the abuse could be subtle and hard to put your finger on, or it could be right there.
The food was just awful, awful . . . every night, or almost every night, we ate this horrible pork and rice mixture. The operator had a big white dog, and every night as we were eating that stuff she would cut up a big steak and give it to the dog. It felt so bad to be jealous of a dog. The owner lived across the street. She always had new cars sitting there, but we were never allowed to go over there except when she hired us to clean—she would pay us with cigarettes or desserts, not money, and sometimes she would find a reason not to give you what you had earned—it was like she and her relatives were royalty and we were slaves.
They always bought the cheapest of everything and for a while, we even had to buy our own toilet paper from the operator out of our P&I money, which, of course, the board and care controlled. There were always games over money, being fined for this, finding out you were always wrong about how much you had. Now, how could they be right all the time and all the residents be always wrong? I’m sure they had money of mine when I left, but I was just so glad to leave, I never asked for it. . . .
There were the times we were locked out sometimes till late at night when they got home from parties and things. They told us to wait at the doughnut shop, but you could not sit at the doughnut shop for hours, so sometimes we just had to walk around in the rain. It made you feel worthless.
I also suspect they gave out medication illegally. One time I was upset and they tried to get me to take pills that I knew were not mine. . . . As far as physical
care, colds and toothaches or cuts and things, it was really nonexistent—there was no care. . . .
I finally went into the hospital for a while, and when I came out, lived with a friend—I was determined not to go back to another home. Now I have my own place, have for a while. It’s so good to talk about all this and get it out—I hope it helps other people who are still going through stuff like that.[19]
In New York State, there has been an ongoing series of scandals concerning for-profit adult homes, which house an estimated total of 15,000 people in large facilities (averaging 150 beds). Deplorable conditions were found, including rat infestations, inadequate food, untrained people giving out medication, residents being subjected to unnecessary medical procedures for financial gain, and numerous other atrocities. Despite repeated investigations, fines, and even operators being sent to prison, these homes continue to be the only housing available for many people discharged from state hospitals in that state.[20]
Other typical housing arrangements for people with psychiatric disabilities include halfway houses and group homes. In most cases, people are required to share a room with another person they have no role in choosing, and must share bathrooms with multiple people. Meals are served at set times, and residents do not get to choose the foods they want. Personality conflicts and similar difficulties, rather than being attributed to the stresses of living closely with others, often are considered part of the person’s symptomatology. Most housing programs run by mental health authorities require participation in treatment programs as a condition of remaining in the housing. Typically, they require residents to be home at a particular time at night, and many also require that the resident be out of the house during the day. These rules can conflict with a person’s attempt to become more independent—for example, when an individual is threatened with losing housing because scheduled work or school interferes with times he or she is required to be at the house.
Although the mental health system would describe the person living in a board-and-care home or a mental health community residence as being “in the community,” the examples cited in this paper show that the person is living a segregated life and has very little meaningful interaction with people other than mental health clients or staff. Based on available data, the perceptions of mental health staff and people with psychiatric disabilities concerning the kinds of housing people “need” are very different. A review of 26 studies on consumer preferences in housing found that approximately 60 percent of survey respondents preferred to live in integrated housing, either alone or with a spouse or partner, and did not want to live primarily with other people with psychiatric diagnoses.[21] A different study by the American Academy of Clinical Psychiatrists (AACP) found significant differences between what individuals wanted for their own housing and what clinicians, family members, and the general public thought were most important:
- Consumers stated that they were largely limited to housing provided through the mental health system, which had many programmatic requirements and which they found coercive.
- Consumers preferred to live in independent, integrated housing; many clinicians, family members, and the community at large preferred that they live in group-living environments that are closely supervised and highly structured.
- Consumers tended to think of housing choice as a fundamental right, regardless of whether they chose to participate in recommended treatment or programs, while many clinicians believed that providing housing without linking it with services was clinically inappropriate.[22]
The current prevailing model is “supported housing,” in which a combination of flexible supports is used to help individuals find and maintain housing of their choice. However, supportive housing terminology is used to describe a wide variety of programs, not all of which are independent, integrated housing approaches.
For example, the story of Elaine (above), the resident of a California board-and-care home, shows a model of housing that, while it is technically “in the community,” retains nearly every feature of institutional living. Sadly, this is the reality of “community” for large numbers of people with psychiatric disabilities who are no longer residing in state hospitals but remain institutionalized in every sense of the word.
Programs that enable people to experience integrated lives are very different. A tenant of Main Street Housing, a subsidiary of On Our Own of Maryland (a program that is described below), is just that—a tenant, living in an apartment. The program executive director, Ken Wireman, describes how Main Street Housing works:
One of our first tenants was a woman who had lost custody of her daughter, mostly because of her psychiatric label. Obviously, it was very distressing to her, and the main thing in her life became getting her daughter back. But she was caught in a typical bureaucratic “catch-22”—the Department of Social Services said she had to have a two-bedroom apartment in order for them to return her daughter, but no housing authority would rent her a two-bedroom unit as a single person. Main Street Housing was able to meet her need, and when she moved into a two-bedroom apartment she regained custody of her daughter. Obviously, this had a very positive effect on her mental health! She is still living in the apartment and is doing very well.[23]
As these two stories make clear, there are fundamental differences between living in a home of one’s own and living in a mental health program dwelling. Among the key elements are choice, integration, tenancy, and length of stay.
Choice: Like other people in society, people with psychiatric disabilities have clear preferences about how they want to live. They want to be able to choose, among other things, the type of housing in which they live, the neighborhood, with whom they live (if they choose not to live alone), what and when to eat, whether or not to participate in mental health services (and, if they want services, to choose the ones they want), and how to schedule their days.
Integration: Given the choice, people with psychiatric disabilities want to live in ways that make them indistinguishable from everyone else. Also, given the choice, they would not live in housing that is identifiable as a mental health program or associate only with other mental health clients.
Tenancy: Housing provided by programs such as Main Street Housing or Pathways to Housing (described below) view people living in the housing as tenants, rather than clients or patients. They are expected to fulfill the requirements of tenancy: paying the rent on time, maintaining the property, and observing neighborhood practices or expectations. People living in housing identified with the two programs sign leases; people living in programmatic housing often have to sign agreements, for example, to take prescribed psychiatric medication or attend day programs, requirements that have nothing to do with housing desires or choices.[24]
Length of stay: As tenants, people can stay in their housing for as long as they choose to lease. In programmatic housing, there may be prescribed lengths of stay, based on clinical diagnosis or other mental health considerations. The housing is considered a “slot” rather than the person’s home, and an individual may lose the “slot” for many reasons, including being hospitalized for a brief period.
Housing is a key element in well-being and recovery. It is difficult to imagine how anyone, particularly a person who may be dealing with the stresses of recovering from a mental illness, can be expected to do well without a secure and safe place to live. Yet the data on housing and mental illnesses shows that homelessness and inadequate housing continue to be major problems.
There is also a strong disconnect between the kinds of housing that are available and consumer preferences, although studies have shown that consumer choice plays a significant role in housing satisfaction and tenure.[25] Therefore, unmet needs include strengthening the role of consumer choice and increasing the supply of independent, integrated housing, while decreasing the amount of congregate housing. SAMHSA has recognized the importance of consumer choice in housing and the role of housing in promoting recovery.[26]
Two Model Programs
In New York City, a program called Pathways to Housing, in operation since 1992, takes people who are both homeless and have chronic mental illnesses (who also often are substance abusers) and moves them directly into permanent individual apartments, providing support services on site as needed. The “housing first” approach shows promise, as described in a newspaper article:
Shopping for telephones is what finally drove it home to Tony Bartol that he was reentering that almost-forgotten world where the sidewalk was not his bed. He stood in front of a wall lined with 200 of them in plastic packaging—white phones with speakers, black ones with six lines, red ones with voice mail—and scratched his head, confused.
“I have no idea what to pick here,” he said. His hand trembled as he touched one, then another. “The last time I owned a phone was 1977.”
A few weeks before, Bartol was sleeping in Manhattan subway stations, so [affected by a mental illness] he could barely pluck reality from the visions of God in his head. He’d been that way for 19 years. On this day in mid-May, the 54-year-old, bushy-bearded string bean of a man was in a department store with two social workers, shopping for a few essentials before moving into his
own apartment.
He was still delusional, still without a job, and still not on the medication he needed to address his psychosis. . . . Now, he had one angel over his street-tough shoulder that other homeless people [with mental illnesses] still foraging in alleyways didn’t— a program called Pathways to Housing, a New York-minted twist on the “supportive housing” model of tackling chronic homelessness in urban America.
Unlike other cutting-edge supportive housing techniques in New York, Philadelphia, Chicago—and being embraced in San Francisco—in which people who have experienced chronic homelessness are moved en masse into residential hotels with onsite social services, Pathways to Housing moves them straight off the street and gives them their own, individual apartments apart from other homeless people, alongside average New Yorkers. And unlike virtually any other program in the country, it does this with the hardest core population of them all: the [people with mental illnesses].
“God has a plan for me,” said Bartol, as he loaded a $16.95 Coby phone into his shopping basket. “I don’t know what it is, but I know this: I’ve got to move inside, or I’ll die.” He clenched his teeth, then let a hint of smile creep onto his lips.
“I think these guys can do that for me,” he said, gesturing to the Pathways social workers. “They’re the only counselor types I ever met who were just straight up with me.”[27]
The philosophy behind this “housing first” approach is described by Pathways to Housing as founded on the belief that housing is a basic human right and that all services should be offered with respect, compassion, and in the spirit of hope and recovery.[28] On one hand, among clinicians and the general public, a widely held belief is that people who are homeless and have mental illnesses need to be placed in closely supervised housing. However, a five-year study that compared the housing-first approach with traditional housing continuum models (in which people who are homeless and with mental illnesses are placed in a series of gradually more-independent living situations) found that 88 percent of Pathways to Housing clients were housed at the end of the study, compared with only 47 percent of clients in New York City’s residential treatment system.[29] Supportive services are offered to Pathways clients, but the intensity is determined by the client. There also is no requirement that individuals be drug- and alcohol-free before being housed. About half of the program’s staff consists of former housing-first program clients.[30] In 2005, Pathways to Housing was awarded an American Psychiatric Association Gold Award for Innovative Mental Health Service Programs.[31]
While the housing-first model has been highly praised and replicated, not all programs that claim to use the model actually follow all of its elements. Some programs, such as Seattle’s, that claim to be a housing-first model, use congregate housing. They maintain the program’s philosophy of giving housing immediately, but the housing is in a facility where all the residents are housing-first clients.[32] Therefore, not all “housing first” approaches promote true community integration.
Another housing program that takes an innovative approach to integrated permanent housing is Maryland’s Main Street Housing, a subsidiary of On Our Own of Maryland, a consumer-run statewide organization. Main Street Housing purchases buildings in scattered sites, renovates the units, and rents them out to people with psychiatric disabilities. The only program requirements are the traditional requirements of tenancy, and people can stay in the apartments for as long as they like, according to their lease terms. As Ken Wireman, Main Street Housing’s executive director, puts it, “A tenant is a normal societal role that has normal responsibilities.”[33]
Another innovative aspect of Main Street Housing is the use of community development funds, rather than just mental health sources, thereby expanding the range of funding available for housing people with psychiatric disabilities.
To ensure the availability of safe, secure, integrated housing that meets consumers’ housing preferences, coordinated local, state, and federal efforts are necessary. It is important to ensure that people diagnosed with mental illnesses are included in overall housing efforts and are not segregated in special mental health housing with their own funding streams. This approach is supported by the surgeon general’s report, which found
[S]upported housing focuses on consumers having a permanent home that is integrated socially, is self-chosen, and encourages empowerment and skills development. The services and supports offered are individualized, flexible, and responsive to changing consumer needs. Thus, instead of fitting a person into a housing program “slot,” consumers choose their housing, where they receive support services. The level of support is expected to fluctuate over time. With residents living in conventional housing, some of the stigma attached to group homes and residential treatment programs is avoided.[34]
Recommendations
The Department of Housing and Urban Development (HUD) should serve as the lead agency for each of these recommendations pertaining to housing needs. However, where changes in federal legislation or policy outside that agency are needed, Congress should provide the necessary supports.
Recommendation One
Housing for people with psychiatric disabilities should be based on consumer choice, provided in integrated settings, and be delinked from mental health programming. Housing needs to be seen as a fundamental element of community integration and recovery. Housing people in the housing of their choice promotes long-term stability and increases successful outcomes. Congress should ensure that funding is designated to appropriate federal agencies for shifting from congregate settings to individual, scattered-site houses and apartments in which people are general tenants, not mental health clients.
Recommendation Two
HHS should work jointly with HUD on a plan to promote integrated housing choices. This plan should include conducting research comparing various housing models,
and funds for implementation of effective housing models should be based on the findings of that research. Furthermore, the housing models funded should demonstrate value given to consumer choice and satisfaction based on input from people with psychiatric disabilities.
Recommendation Three
HUD should examine and adjust its programs for the general population. Generic housing programs should include mental health consumers in a nondiscriminatory way. Mental health authorities should not be the sole administrators of housing funds for mental health clients. In addition, including mental health clients in general housing efforts will promote integration and prevent the perpetuation of segregation of mental health housing—that is, the existence of enclaves in which all residents are people diagnosed with a psychiatric disability.
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Chapter Four: Real Jobs at Real Wages
Modern mental health treatment philosophy is based on the premise that people with mental disorders have the right to live and work in the community. To realize these goals, people with mental disorders must be able to access appropriate community-based treatment and rehabilitation services and safe and affordable housing and should have equal access to employment opportunities that are commensurate with their skills, interest, and training.[35]
The Importance of Work
People diagnosed with mental illnesses face high levels of unemployment, which, of course, creates additional barriers to community integration. Without jobs, people are dependent on benefits, which keep them in poverty, and they are also deprived of a meaningful social role. One study found that people with mental disabilities were unemployed at a rate three to five times higher than the rate for people without disability labels; the study reports an unemployment rate for people with a diagnosis of schizophrenia estimated as high as 90 percent.[36] Among the factors that contribute to high unemployment are stigma and discrimination, financial benefits policies that discourage work, the belief by many clinicians that work is “too stressful” and contributes to relapse, and interrupted and spotty work histories. This study found
the following:
Historically, competitive employment has not been a major focus of the mental health system. There has been a tendency to adopt minimal expectations and lower standards of achievement for people with a mental disorder. Sociostructural barriers and disincentives have also made it difficult for people with a mental disorder to get in and stay in the competitive workforce. Modern mental health treatment philosophy is, however, based on the premise that people with mental disorders have the right to live and work in the community. To realize these goals, people with mental disorders must be able to access appropriate community-based treatment and rehabilitation services and safe and affordable housing and should have equal access to employment opportunities that are commensurate with their skills, interest, and training. All too often, stigma, expressed through a lack of political commitment to provide adequate services, community intolerance toward people with [mental illnesses], and employment inequity, makes this impossible. As stigma is so pervasive and the consequences so profound, international organizations such as the World Health Organization and the World Psychiatric Association have identified stigma related to mental illness as the most significant challenge facing the field of mental health today.[37]
The findings above indicate the difficulty of teasing out the interrelated factors of housing, work, and stigma/discrimination as obstacles faced by people with psychiatric disabilities.
For many years, the prevailing belief among mental health clinicians was that people with severe mental illnesses could not work in competitive employment, and the jobs that were made available were in sheltered workshops, where the work was extremely low skill, wages were far below the minimum, and all employees were people with disabilities. In recent years, there is increasing evidence that people with psychiatric disabilities can work competitively, and the model of supported employment has been used. In this model, the individual with a psychiatric disability works in a competitive job commensurate with his or her abilities and interests and support is provided in individually tailored ways that may include on/offsite job coaching, peer support groups, or whatever else the individual finds useful in maintaining the job.
The Shift to Competitive Employment
The shift from sheltered workshops to competitive employment has been shown to be effective in promoting integration. In one study, a sheltered workshop program that included people with psychiatric disabilities made a gradual conversion, over a 15-year period, to supported employment. When the program was purely a sheltered workshop, less than 5 percent of clients made the transition to competitive employment annually (an unsurprising result, since the program was not geared toward moving clients into the general labor force). The employment rate gradually improved as the program shifted its service model; by the end of 15 years, when a full supported-employment model was utilized, half the clients were able to achieve competitive employment.[38]
The shift in public policy from unemployment and segregation in sheltered settings to promoting competitive employment for people diagnosed with mental illnesses has a growing research base. For example, a SAMHSA-funded, five-year, eight-site study, completed in 2000, found that a supported-employment model, with support services available for as long as people with psychiatric disabilities wanted them, had dramatic results. When compared to traditional vocational programs, more than twice as many people in the experimental (supported-employment) group obtained and kept competitive jobs compared with those in the control group.[39] A review of 11 studies comparing various employment models found that “people in supported employment earned more and worked more hours per month than those who had had prevocational training” and concluded, “Supported employment is more effective than prevocational training at helping people with severe mental illness obtain competitive employment.”[40]
The low expectations of the old sheltered workshop and day-treatment models helped produce poor outcomes because they instilled in people the belief that they were unable to work. Edward Knight, Ph.D., vice president for recovery at Value Options in Colorado, a managed care company, saw how the shift affected program participants:
They dropped their ACT [Assertive Community Treatment] team and their group homes, over a period of time, and ended day treatment, because people were recovering. The executive director [of one of the programs] told me he would be in the mall and would recognize people from the mental health center, and he noticed that in this setting they behaved like other people in society, which they did not do in the mental health center. He made a decision that if they paid less negative attention to people they would start to recover. He found that people were getting better from getting less attention paid to their symptoms and behaviors. He met with the staff and discussed recovery, and then invited me in to do training with the staff over a period of time. At one point, the staff was all upset because the executive director was shutting off day treatment. When they didn’t have to go to day treatment every day, one guy, who had been very symptomatic, went out and got a job! So they learned that they could help people to make transitions.[41]
One of the programs supported by Value Options is Aspen Diversified Industries in Colorado Springs, which is part of Pikes Peak Mental Health Center. Dr. Knight indicates that the program involves people with psychiatric disabilities in starting businesses as their means of employment. He also compares the program with a sheltered workshop environment where the agency double collects—they collect from the state vocational program or Medicaid program, and they also collect from the companies with whom they subcontract. Sheltered workshops do not always encourage decision making or responsibility. Aspen Diversified Industries is not a sheltered workshop. The [programs include training] for computer skills and train clients or get them training in the kind of work they want to do.[42]
This Aspen program also promotes integration by diversifying its client base:
The workforce is not all mental health clients. They hire people with other disabilities and also poor people going back to work. It’s very heterogeneous. They are now very large. The employees are working-class folk—they go to all the meetings and events that Aspen Diversified Industries holds, alongside staff of the mental health center. This serves to change the culture of the mental health center.[43]
Still another model for promoting an integrated workforce is the brokerage model, as exemplified by Empowerment Initiatives of Portland, Oregon. In this model, funds that otherwise would be controlled by a service agency are controlled directly by the client, who can expend the funds for goods or services that promote his or her recovery. The executive director, Adrienne Young, describes how the Empowerment model works:
In one year, we have moved from having 5 people competitively employed to having 13, all doing jobs they want to be doing. Six people were in college or vocational programs, now there are 13. This is out of a total population of 26. We have seen some really amazing stories. One woman was on SSI, she wasn’t working . . . her life wasn’t going anywhere. Now she has a full time job, she’s off benefits, she’s doing well. Sometimes it’s amazing what a small expenditure can make in a person’s life. Using her brokerage plan, she spent $29.99 to buy a sound spa that makes white noise, so she could meditate and calm herself down, and that helped her to do things which she couldn’t do before because she was distracted by outside noises. And that was when she began to change her own life. When you’re poor, $29.99 on something nonessential is something you just can’t do for yourself.[44]
The Problem with Benefits
Unfortunately, one of the biggest barriers to employment is the benefit system itself. Often, this is what people call the “benefits trap.” As one study from Cornell University found,
We argue that this discouraging situation will continue unless we can bring disability programs into line with more contemporary understanding of the capabilities of people with disabilities and successfully implement broad, systemic reforms to promote their economic self-sufficiency.[45]
The Cornell researchers also propose a variety of policy changes to promote work and self-sufficiency. They also argue that the benefits system, developed at a time when expectations for people with disabilities were very different from needs and expectations today, contains a variety of perverse disincentives that keep people trapped in poverty while they are collecting benefits. At the same time, the system places numerous obstacles in the way of efforts to achieve self-sufficiency.
Work Opportunities in Consumer-Run Programs
One type of program that has been providing a variety of work opportunities for people with psychiatric disabilities is the mental health consumer/survivor self-help movement itself. The experience of Doug DeVoe, the chief executive officer of Ohio Advocates for Mental Health (OAMH) in Columbus, shows how the consumer-run programs can work:
When I started here as director 16 years ago, I had been unemployed; I was doing jobs like cleaning toilets. When I came to OAMH, I just met this group of people who didn’t care about my past history; they just accepted me. I’ve never been anyplace where I felt accepted just walking in, except for peer support groups.
The Certified Peer Specialist Project in Atlanta, Georgia, provides a similar example. The project trains people who have direct experiences receiving mental health services to work within the mental health system helping their peers toward recovery. Beth Filson, the project manager, is herself a person recovering from mental illness. She recalls,
This job changed my life. It began with the Georgia Mental Heath Consumer Network. I went to their summer conference; in fact, a friend almost “forced” me into going. Suddenly I realized I wasn’t alone. It was a transformative moment—my life can be more than what it was before. I knew I wanted to be part of this.
In my work, I interact daily with people who do not have a disability; in the beginning, some of them saw me as the “crazy person.” But now we are colleagues; people … see me as an individual. It’s like I have passed some test, that even though I am a person with a mental illness, they see that I can hold down a job with great stress, and that means they respect me.
What do people need in their lives? Employment, employment, employment! Consumers who work within the system as certified peer specialists, they are providing a unique skill set that traditional providers don’t have, because we have been there. It’s a unique niche for people with disabilities, being a certified peer specialist, but at the same time, it’s a competitive employment situation. There are jobs within our mental health system that only certified peer specialists can do—it’s required for certain job descriptions. This means that other employees see the person with the disability in a different role, and it changes how they view people. Even the larger society is beginning to see us as “just people.” When we tell people what we do, that normalizes what a person with a mental illness is like for other people. I am proud to be part of this program that is changing lives on a profound level.[46]
It is important to ensure that people with psychiatric disabilities can work at jobs that are commensurate with their levels of education and talents. While entry-level jobs may be appropriate for people with little or no work histories or limited education, it is discouraging and demeaning to place people with extensive work histories and advanced education in similar jobs. (Such jobs are widely derided by mental health consumers as “the 3 F’s—food, filth, and filing.”) A study at Boston University Center for Psychiatric Rehabilitation surveyed close to 500 people who worked at managerial or technical jobs after experiencing psychiatric disability. The sample represented a well-educated segment of the mental health consumer population—83 percent had at least a college degree, a segment of the population that has been served particularly poorly by traditional practices within the mental health system. People in the study reported having a variety of diagnoses, including bipolar disorder, major depression, and schizophrenia; they therefore constitute a population that could be considered to have severe psychiatric disabilities. Nonetheless, 73 percent of respondents were employed full time (an additional 6 percent were self-employed); 62 percent had held their positions for more than two years (29 percent of the sample were employed at the same position for more than five years); and they reported annual incomes ranging from $20,000 (79 percent of the sample), to more than $50,000 (22 percent). An array of supports were used to maintain the employment, including taking a break (62 percent), use of medication (49 percent), support of spouse/partner (34 percent), and support of therapist/psychiatrist (33 percent).[47]
Federal Policies and Employment
One recent change in federal policy, designed to improve work outcomes for people with disabilities, is the Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA). Unfortunately, a recent multisite study on the effects of the act for people with psychiatric disabilities has shown that TWWIIA has had a minimal impact on this population. One problem identified in the study was that many of the employed people did not have health care coverage. They were faced with the cruel choice of remaining on benefits to keep their medical coverage, or increasing their income through work but having to manage without health insurance to meet their needs. Since most people with psychiatric disabilities have high health care expenses, they often had to “choose” not
to work.[48]
Given the research evidence showing that people with psychiatric disabilities can work, and want to work, compared with the appalling rate of unemployment among this population, major shifts in policy and practice are necessary to bring people with psychiatric disabilities into the workforce.
Recommendations
Recommendation Six
Congress should ensure that a number of federal agencies collaborate to address
the issues affecting the employment of people with psychiatric disabilities, including benefits retention, supported employment, and TWWIIA. The federal agencies that should form the initial partnership are the Social Security Administration and the Departments of Health and Human Services, Labor, and Education. Federal policy on benefits needs to be restructured to account for changes in the nature of disability and in research evidence.
Recommendation Seven
The Social Security Administration and the Department of Health and Human Services should work together to eliminate the “benefits trap” and encourage work while preserving access to health insurance and gradually reducing income supports for people with psychiatric disabilities.
Recommendation Eight
The U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research should develop and implement evidence-based plans to phase out sheltered workshops and other forms of segregated employment and replace them with more supported work opportunities that provide work commensurate with individual choice, educational level, and interest.
Recommendation Nine
Congress should ask the Government Accountability Office (GAO) to investigate what changes in the TWWIIA would make the program more useful to the population with psychiatric disabilities. The GAO study should include information obtained directly from people with psychiatric disabilities. The research should cover innovative work approaches, including work provided directly by mental health consumer/survivor organizations, and funding should be directed toward such programs with a record of success in providing employment.
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Chapter Five: Stigma and Discrimination—The Invisible Barriers
The biggest and most hurtful obstacle people face is stigma. If you are poor, if you are seen on the streets in town walking around, people identify individuals as being different—and if you’re seen going into a mental health center, you’re identified. If you are trying to get a job through a case manager, you’re identified. And once you have that label, it makes everything more difficult.[49]
Defining Stigma and Discrimination
The barriers created by stigma and discrimination are very real—just as real as the more familiar barriers faced by people with other disabilities. For example, there are stairs that prevent a person who uses a wheelchair from entering a building, printed materials that a person who is blind cannot access and a person with a specific learning disability cannot read, and audible signals and announcements that a person who is deaf or hard of hearing cannot hear. Likewise, the stigma and discrimination surrounding mental illnesses create real obstacles for people with psychiatric disabilities, as they attempt to rent apartments, get jobs, go to school, or engage in many other aspects of community living.
The President’s New Freedom Commission on Mental Health defines stigma as follows:
[A] cluster of negative attitudes and beliefs that motivate the general public to fear, reject, avoid, and discriminate against people with mental illnesses. Stigma is widespread in the United States and other Western nations. Stigma leads others to avoid living, socializing, or working with, renting to, or employing people with mental disorders—especially severe disorders, such as schizophrenia. It leads to low self-esteem, isolation, and hopelessness.[50]
While stigma focuses on attitudes, there is a strong argument to be made that more attention should be paid toward discrimination—the way in which stigma is operationalized. Discrimination occurs when a person who is otherwise qualified is not offered a job or an apartment, for example, because he or she belongs to a group about which negative attitudes are held, despite his or her individual qualifications. Discrimination can be remedied by legal means, while framing the problem as one of “stigma” individualizes the concept and requires changing public attitudes. Psychiatrist Graham Thornicroft, M.D., notes,
The focus upon the core concept of stigma rather than upon prejudice and discrimination has also separated the field of mental illness from the mainstream of disability-related policy, and in particular the stigma idea has offered policymakers and politicians few recommendations for action.[51]
Dr. Thornicroft adds,
If we deliberately shift focus from stigma to discrimination, there are a number of distinct advantages. First, attention moves from attitudes to actual behavior, not if an employer would hire a person with mental illness, but if he or she does. Second, interventions can be tried and tested to see if they change behavior toward people with mental illness, without necessarily changing knowledge or feelings. Third, people who have a diagnosis of mental illness can expect to benefit from all the relevant anti-discrimination policies and laws in their country or jurisdiction, on a basis of parity with people with [physical] disabilities. Fourth, a discrimination perspective requires us to focus not upon the “stigmatized” but upon the “stigmatizer.” In sum, this means sharpening our sights upon human rights, upon injustice, and upon discrimination as actually experienced by people with mental illness.[52]
Lenora Kimball, executive director of Stepping Stone and the Next Step Peer Support and Crisis Respite Centers, Claremont, New Hampshire, is a person who has recovered from a mental illness and describes the reality of stigma this way:
The biggest and most hurtful obstacle people face is stigma. If you are poor, if you are seen on the streets in town walking around, people identify individuals as being different—and if you’re seen going into a mental health center, you’re identified. If you are trying to get a job through a case manager, you’re identified. And once you have that label, it makes everything more difficult.[53]
Jean Campbell, Ph.D., director, Program in Consumer Studies and Training, Missouri Institute of Mental Health, St. Louis, is another person who has recovered from a mental illness. She describes three levels of stigma. The first occurs within the person:
This internalized stigma of having a psychiatric disability prevents people from moving on in their lives. They lack a vision of hope. People don’t think of having a future or often of being motivated because of what they have been told by family, neighborhood, doctors, nurses, employers, teachers, etc.—that they have limited possibilities. There is a loss of self, loss of hopes, loss of dreams for the future. People get locked into the past or the present and are not moving forward in
their lives.
She identifies the next level as institutional:
The major contributor to stigma is involuntary treatment, because it creates tremendous fear and makes people afraid to seek services that they may need. It makes them think of themselves as second-class citizens. Involuntary treatment and coercion is the biggest barrier in the entire mental health system and in society. People are without full citizenship and rights, which is perpetuated by the mental health system. An albatross around the neck of the traditional mental health system is the biomedical model, because it creates a barrier for initiating the new consumer-directed philosophy and the concept of recovery.
According to Dr. Campbell, the third level is cultural:
There continue to be attitudes throughout society that people with psychiatric problems are hopeless and helpless. There is the additional stigma of poverty that makes people looked down on. People often have lost opportunities for an education, and then they are looked down on because they don’t have an education, can’t buy a house, go on a vacation, and do things that other people can, and this gets attributed to their mental illness and to being different, rather than just because they are poor.[54]
Stigma and Discrimination Within the Mental Health System
In 1999, the surgeon general urged Americans to take advantage of the tremendous growth of science by seeking treatment and emphasized the importance of bringing this often hidden topic of mental illnesses out into the open. The report notes that mental illnesses are real illnesses that, if untreated, can sometimes be as disabling and serious as cancer and heart disease in terms of premature death and lost productivity. However, quality of life is improved tremendously when diagnosis is early and treatment is appropriate.
NCD’s 2000 report, From Privileges to Rights,[55] found that pervasive discrimination against people with psychiatric disabilities was built into the structure of the mental health system itself, which routinely removed decision-making power from people because of their psychiatric diagnosis and subjected them to unwanted treatment that they often found harmful. Unfortunately, most of the anti-stigma campaigns in existence ignore the very real stigma and discrimination practiced by the mental health system. An exception is the Anti-Stigma Project run collaboratively by On Our Own of Maryland (a mental health consumer-run organization) and the Maryland Mental Hygiene Administration, which “fights stigma within the mental health system by raising consciousness, facilitating dialogues, searching for creative solutions, and educating all participants within or connected to the mental health community.”[56]
The Maryland project has developed a number of presentations designed specifically to assist mental health providers to recognize stigmatizing practices within their own programs. One is an interactive workshop, “Stigma … In Our Work, In Our Lives.” The coordinator, Jennifer Brown, describes the project:
We basically go in to level the playing field. Through interactive exercises like role playing and group discussion, we ensure that all points of view are heard and that each viewpoint is given equal merit. Many workshop participants have told us that they did not realize how stigmatizing their own actions were until attending the workshop. The process really makes you examine your feelings as well as your actions, and that is true of all who participate, not just consumers or providers.[57]
Stigma and discrimination against people with psychiatric disabilities create barriers that must be removed to ensure that they have equal opportunities to participate fully in livable communities that are welcoming to all.
Recommendations
The surgeon general’s report of nearly a decade ago proposed that broad actions were needed to improve the quality of mental health in the nation, including the need to overcome stigma. The report also indicated that stigma and discrimination result in a gap between treatments that research has shown to be optimally effective and what many people actually receive in practice.
Recommendation Eight
Recognizing that stigma serves as a deterrent to obtaining appropriate and necessary care, and that stigma and discrimination result in many people not receiving optimal treatment, HHS should ensure that research is conducted on the effects of stigma and discrimination on community integration and within the mental health system itself.
Recommendation Nine
While federal leadership in addressing stigma and discrimination should originate in HHS, the President should establish a governmentwide task force through an Executive Order. Its task would be time limited for reporting outcomes of agency work conducted collaboratively to examine promising practices within individual agencies, as well as joint efforts for combating stigma and discrimination. The Executive Order also should request that the task force report include a plan to ensure broad dissemination of practical findings for possible replication. Ultimately, the outcomes can benefit the people with mental illnesses, their family members, other advocates, and the larger community. Each federal agency that administers programs for the general population should examine antidiscrimination practices toward people with disabilities to ensure equal application to people with psychiatric disabilities/mental illnesses.
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Chapter Six: Livable Communities in Action—Models That Work
For many years I felt no hope. It was getting involved in self-help that changed my life; before that, I never felt like a “usual person.” I never had the opportunity to be in an environment where I could feel competent and capable.[58]
Identifying What Helps
As described earlier, developments in mental health have shown that genuine recovery from serious mental illnesses, once thought of as rare, is possible for everyone, if people are provided with the appropriate mix of services and supports.[59] Practice, however, is lagging far behind the research evidence, since the majority of people diagnosed with mental illnesses are served in programs that do not promote recovery. Carpinello et al. described the lag between the growing research evidence on recovery and the persistence of old practices:
The challenge in implementing evidence-based practices in routine mental health settings is largely to create a major shift in how the mental health industry defines a high-quality environment. A high-quality system must be based on research evidence and must also be consumer centric, representing a shift in goals from community-based systems of care that treat and shelter or support consumers via community-integrated systems that deliver high-quality services to customers who want to design and manage their own recovery.[60]
Despite these difficulties, there are a number of existing programs that can serve as models and that have integrated recovery into practice, delivering services that enable people diagnosed with serious mental illness to live integrated lives in the community. The programs described here include independent living, personal assistance services, self-help/peer support programs, networking and education for peer support, provider-run programs that promote recovery, innovative uses of Medicaid funding, person-centered planning, and self-determination. These programs and concepts show how a variety of approaches have been successful in delivering services on the local level, and the programs suggest a number of possible directions to guide the redesign of existing programs or the development of new ones.
Independent Living
The independent living (IL) model has been one of the strongest forces in helping to transform the lives of people with disabilities from institutionalization and dependence to self-determination. As documented by NCD in its 2004 report,[61] when people with disabilities have the appropriate supports, community living becomes possible. Unfortunately, this model has never been implemented fully for people with disabilities in general, many of whom continue to languish in nursing homes, group homes,
and other facilities; people with psychiatric disabilities specifically have lagged even further behind.
A number of forces have kept progress in psychiatric disability largely separate from the gains made by people with other primary disabilities. The forces affecting segregation include differences in funding streams, negative beliefs about the ability of people with psychiatric disabilities to control their own lives, greater control by professionals over people with psychiatric disabilities than control over people with other disabilities (including the power of involuntary commitment), and general stigmatizing attitudes that have linked psychiatric disability with violence and incapacity.
As one study recognized:
While it is understood that centers for independent living work with and on behalf of people with all types of disabilities, it must be acknowledged that many centers, especially in the early days of center development, dealt primarily with [people] who had physical and sensory disabilities. Indeed, some refer to mental disability as the “stepchild” of the IL Movement.[62]
Nevertheless, some IL centers have made a deliberate attempt to rectify the neglect of the mental health population; one example is the Westside Center for Independent Living in Los Angeles. Westside developed a peer support project to train mental health consumers as peer supporters, who were then employed by the center.[63]
Another IL center that has conducted outreach to the mental health consumer population is Stavros Independent Living Center in Amherst, Massachusetts. Janet Shaw, the director of Independent Living Services at Stavros, has found that there are difficulties in serving the mental health consumer population:
One of the greatest problems is the stigma against people labeled with psychiatric disabilities. They get a bum rap. Society sees them as dangerous. People don’t want them in their neighborhood. There is a huge misunderstanding about what it means to have a psychiatric disability.
Another barrier, believe it or not, is the medical model. We’re stuck in this model that says that people with psychiatric disabilities will be okay if they just take their medication, and that’s basically all they get. For a lot of people, the medications cause some symptoms that are often thought of as being part of their mental illness, like holding their bodies in strange positions or drooling, which makes them look very different. Hospitalization, which is often forced on people, creates many problems. No one is thinking outside the box, about options other than prescribing medicine and putting them in the hospital.
Part of the misunderstanding about having a psychiatric disability, as opposed to some other disabilities, is that there’s nothing you can see as far as a disability, nothing that is apparent. For a lot of people with psychiatric disabilities, they would benefit from having, for example, the personal care attendant program [called, in many states, personal assistance services]—at this point, it’s incredibly difficult for people with psychiatric disabilities to access this program. For example, we might get someone in here with a label of being bipolar. The nurses who do the eligibility evaluations are trained to look for physical needs, and often it’s hard for them to see that the person with this diagnosis could benefit from having personal assistance. This is just one of many difficulties that we find in trying to be helpful to people with psychiatric disabilities.[64]
Mike Oxford, executive director of the Independent Living Resource Center in Topeka, Kansas, has found systemic barriers in his efforts to serve the population of people with psychiatric disabilities:
A few years ago, our center, working with Kansas’s protection and advocacy agency, was able to meet and talk with people in all of the special long-term care facilities for the mental health population in the state, as part of a formal state assessment. We got in the door, we were able to follow up, and some people were able to move out. We asked people, “Why are you here?” It turns out that they end up there because they don’t have a support structure—families that either aren’t around or aren’t supportive. Some people have been there for decades, just forgotten. We’ve been able to use some pretty low-tech things that every IL center is funded for—advocacy, skills building, helping folks hook up with other people and entities they can talk to. Some folks didn’t need a whole lot of stuff—physical access wasn’t a problem like it might be for people in other kinds of facilities. Sensory accessibility was less of an issue. So it’s easier to find housing for people with these disabilities. People may need medical care, but they can get that from medical facilities that are available in the community—it doesn’t have to come from an institution. Although concrete physical barriers
are less, barriers like bigotry are higher. Extensive waivers and programs
may be less necessary if you can find community medical providers and acceptable housing.
One person we were able to help was a man who stayed up all night, making a lot of noise. The facility said that this made him unsuitable for community housing, but we found him a trailer out in the country, where his habits didn’t create a problem. The facility’s “solution” was to put him on lots of medication and give him a lot of behavioral training to try to change his behavior. This is a clear example of a different kind of mindset—the IL way vs. the traditional provider way. It was no big expense to find this man a cheap place to rent in
the country.
We were able to get another person out of the institution by using the brain injury waiver. It’s another example of being creative and trying to make the system work for people. But it shows how difficult it can be to serve this population, because you have to make the extra effort.
Our whole theory is to look for what is needed—not what the person’s label is—to get the person where they want to go. We can do that, through our regular grant and being creative. The biggest problem is breaking through the professional system.[65]
Personal Assistance Services
Consumer-directed personal assistance services (PAS) is a program offered by many IL centers; it enables people across the severity continuum of disabilities to live independently. In the PAS model, the person with the disability hires and trains an assistant to provide help with activities of daily living that the person has difficulty performing because of disability. In many states, PAS is available with Medicaid funding, through the personal care option. A conference of disability experts, held by the World Institute on Disability in 1999, recommended the expansion of PAS to the psychiatric disability population.[66]
While there have been some instances of providing PAS to people with psychiatric disability, there have also been difficulties in doing so. As one study found,
[T]here is an evolving recognition that PAS has the potential for becoming a meaningful, efficient, and effective means for serving people with long-term mental illnesses. As it is conceived for people with other disabilities, an individual may provide assistance to people with psychiatric disabilities so that they can achieve greater independence from more intensive or medically oriented services and function more fully as citizens. The actual services provided by the attendant to people with psychiatric disabilities, however, are likely to differ from those provided to people with other disabilities. Help with activities of daily living will less likely require hands-on assistance to transfer from one place to another, but will more likely mean providing the cues, reminders, and encouragement necessary for those with psychiatric disabilities to focus on needed tasks, sequence necessary steps, and initiate effective and concerted actions. Like people with other disabilities, those with psychiatric problems may also require assistance with budgeting, meal preparation, hygiene, and transportation, but again the form of the assistance would likely change from a provider who contributes the physical assistance to one who provides cognitive and emotional assistance. The application of PAS to the psychiatric population is attractive for several reasons. PAS has an established funding base through the Medicaid personal care option, which can be a considerable source of federal revenue for states that wish to serve their Medicaid recipients with psychiatric disabilities in this way. Nonetheless, there are difficulties in a simple expansion of the original concept to those with psychiatric disabilities.[67]
Oregon is an example of a state where PAS has been made widely available to people with psychiatric disabilities; currently, there are over 600 mental health consumers being served in the PAS program, which is funded by Medicaid. Many of the personal care attendants are themselves people diagnosed with mental illness, who are further along in their own recovery than the people they are assisting. In an interview, Michael Moore, Adult Services coordinator for the Oregon Department of Human Services, describes how working as a personal care attendant assists recovery:
When people go to work, the symptoms of their mental illness actually go down quite a bit, and that makes sense to me, intuitive sense. If you’re sitting at home not doing much, you’re probably gonna dwell a little bit on yourself. It’s probably not too great on the brain.[68]
An Oregon public radio story describing the program interviewed a woman whose severe agoraphobia had kept her housebound until she acquired a personal care attendant. The attendant, herself a person in the process of recovery, receives a salary of $9 an hour to provide 20 hours a month of PAS services, such as assisting with shopping and housekeeping. Moore developed the program based on similar programs that serve people with general medical disabilities, and he believes that it both saves the state money and assists people toward independence.[69] Moore plans to increase the size of the program to serve a thousand recipients by 2008.[70]
Louisiana is another state that has looked at the PAS model for people with psychiatric disabilities. Louisiana has developed a training curriculum to educate personal assistants about the nature of psychiatric disability and how the PAS model applies to people with severe mental illnesses. However, Ann |
