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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

Acknowledgments

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

**Executive Summary [5](#__RefHeading___Toc193011691)**

The Livable Community Framework [5](#__RefHeading___Toc193011692)

Chapter One: Introduction to Livable Communities\
for People with Psychiatric Disabilities
[11](#__RefHeading___Toc193011693)

Terminology [14](#__RefHeading___Toc193011694)

Chapter Two: The Recovery Model and Its Implications
[15](#__RefHeading___Toc193011695)

What Is the Recovery Model? [15](#__RefHeading___Toc193011696)

An Empowerment Model of Development and Recovery
[16](#__RefHeading___Toc193011697)

Recovery and Independent Living [17](#__RefHeading___Toc193011698)

Chapter Three: Housing---The Key Element
[19](#__RefHeading___Toc193011699)

Programs or Homes? [19](#__RefHeading___Toc193011700)

Two Model Programs [24](#__RefHeading___Toc193011701)

Recommendations [27](#__RefHeading___Toc193011702)

Chapter Four: Real Jobs at Real Wages [29](#__RefHeading___Toc193011703)

The Importance of Work [29](#__RefHeading___Toc193011704)

The Shift to Competitive Employment [30](#__RefHeading___Toc193011705)

The Problem with Benefits [32](#__RefHeading___Toc193011706)

Work Opportunities in Consumer-Run Programs
[33](#__RefHeading___Toc193011707)

Federal Policies and Employment [35](#__RefHeading___Toc193011708)

Recommendations [35](#__RefHeading___Toc193011709)

Chapter Five: Stigma and Discrimination---The Invisible Barriers
[37](#__RefHeading___Toc193011710)

Defining Stigma and Discrimination [37](#__RefHeading___Toc193011711)

Stigma and Discrimination Within the Mental Health System
[39](#__RefHeading___Toc193011712)

Recommendations [40](#__RefHeading___Toc193011713)

Chapter Six: Livable Communities in Action---Models That Work
[42](#__RefHeading___Toc193011714)

Identifying What Helps [42](#__RefHeading___Toc193011715)

Independent Living [43](#__RefHeading___Toc193011716)

Personal Assistance Services [45](#__RefHeading___Toc193011717)

Self-Help/Peer Support Programs [48](#__RefHeading___Toc193011718)

Networking and Education for Peer Support
[54](#__RefHeading___Toc193011719)

Provider-Run Programs That Promote Recovery
[55](#__RefHeading___Toc193011720)

Innovative Uses of Medicaid Funding [58](#__RefHeading___Toc193011721)

Person-Centered Planning [59](#__RefHeading___Toc193011722)

Self-Determination [60](#__RefHeading___Toc193011723)

Recommendations [62](#__RefHeading___Toc193011724)

Chapter Seven: Other Barriers to Inclusion\
in Livable Communities [64](#__RefHeading___Toc193011725)

People Living in Rural Areas [64](#__RefHeading___Toc193011726)

Accessing General Medical Care [67](#__RefHeading___Toc193011727)

Recommendations [69](#__RefHeading___Toc193011728)

Chapter Eight: Envisioning an Ideal Future
[70](#__RefHeading___Toc193011729)

Appendix [74](#__RefHeading___Toc193011730)

[]{#__RefHeading___Toc193011691 .anchor}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*

[]{#__RefHeading___Toc193011692 .anchor}**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*

[]{#__RefHeading___Toc193011693 .anchor}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

1\. Provides affordable, appropriate, accessible housing

2\. Ensures accessible, affordable, reliable, safe transportation

3\. Adjusts the physical environment for inclusiveness and accessibility

4\. Provides work, volunteer, and education opportunities

5\. Ensures access to key health and support services

6\. 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.

[]{#__RefHeading___Toc193011694 .anchor}**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.

[]{#__RefHeading___Toc193011695 .anchor}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*

[]{#__RefHeading___Toc193011696 .anchor}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.

[]{#__RefHeading___Toc193011697 .anchor}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.

[]{#__RefHeading___Toc193011698 .anchor}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.

[]{#__RefHeading___Toc193011699 .anchor}Chapter Three: Housing---The Key
Element

[]{#__RefHeading___Toc193011700 .anchor}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]

[]{#__RefHeading___Toc193011701 .anchor}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]

[]{#__RefHeading___Toc193011702 .anchor}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.

[]{#__RefHeading___Toc193011703 .anchor}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]

[]{#__RefHeading___Toc193011704 .anchor}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.

[]{#__RefHeading___Toc193011705 .anchor}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]

[]{#__RefHeading___Toc193011706 .anchor}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.

[]{#__RefHeading___Toc193011707 .anchor}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]

[]{#__RefHeading___Toc193011708 .anchor}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.

[]{#__RefHeading___Toc193011709 .anchor}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.

[]{#__RefHeading___Toc193011710 .anchor}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]

[]{#__RefHeading___Toc193011711 .anchor}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]

[]{#__RefHeading___Toc193011712 .anchor}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.

[]{#__RefHeading___Toc193011713 .anchor}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.

[]{#__RefHeading___Toc193011714 .anchor}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]

[]{#__RefHeading___Toc193011715 .anchor}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.

[]{#__RefHeading___Toc193011716 .anchor}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]

[]{#__RefHeading___Toc193011717 .anchor}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 Darling, project director of the
Community Integrated Personal Assistance Services and Supports Project
(CPASS), Louisiana Office of Mental Health, found that various programs
did not interact well, which prevented implementation of CPASS. The
agency that makes disability determinations used a purely physical
definition of the need for PAS, so only people who had a general medical
disability in addition to their psychiatric disability were able to
receive PAS services.[^71]

Medicaid regulations governing PAS relate the need for these services to
the inability of the individual to perform "activities of daily living"
(ADL), which are defined as physical activities---bathing, dressing, and
transferring from a bed to a wheelchair or feeding oneself, for example.
And while available PAS data shows that some states (e.g., Arkansas,
Colorado, Kentucky, and New Jersey)[^72] already report serving people
with mental health needs, national application of the ADL category could
assist in the expansion of PAS for people with psychiatric disabilities.
The expanded provision of consumer-directed PAS to the psychiatric
disability population is one approach that holds enormous potential and
is deserving of further study and demonstration projects.

[]{#__RefHeading___Toc193011718 .anchor}Self-Help/Peer Support Programs

While there are many examples of people with psychiatric disabilities
who have received services through IL centers that have enabled them to
become independent, the fact is that many or most mental health
consumers who receive self-help services access such services through a
largely parallel system of programs developed within the mental health
consumer movement. Across the United States, there are literally
hundreds of drop-in centers, support groups, and other services
developed and run by organizations of people with psychiatric
disabilities, and these facilities assist people to become more
independent and to gain control of their own lives. The mental health
consumer movement developed largely separate from, but similar to, the
IL movement, based on the same principles of choice and individual
control.

Beginning in the late 1970s, former patients began to form groups to
promote change in the mental health system and to develop self-help and
mutual support.[^73] In the beginning these groups operated without
outside funding and were, therefore, extremely limited in scope---for
example, they met as support groups in people's homes or in church
basements, libraries, and similar settings. The first government-funded
project was On Our Own of Maryland, which in 1983 received state funding
to open a drop-in center. In 1985, with funding from the Community
Support Program at the National Institute of Mental Health, On Our Own
hosted a national conference for mental\
health consumers, which helped to spur the development of similar
projects around\
the country.

Unlike IL centers, which have an assured source of federal funding
through the amendments to the Rehabilitation Act of 1978 and successor
legislation, mental health self-help projects remain dependent on a
mixture of federal, state, and private funds. They often face
difficulties in assuring a continued source of funding. This makes the
existence of even well-established groups more precarious than that of
IL centers.

Peer support is the key service of both IL centers and mental health
self-help programs. The basis of peer support is the belief that a
person who has experienced a particular problem has a special expertise
in providing help to others with similar problems. Peer support grew out
of the negative experiences that people with disabilities faced in
dealing with professionals who, themselves, often held limited and
stigmatizing beliefs about the very people they were supposed to be
helping. An example is Ed Roberts, often called the "father of
independent living," who was told by a counselor that he was "too
disabled" to benefit from the college education he wanted. He not only
obtained\
his college education, but later became the director of the same agency
that had turned him down.[^74]

Peer support has become a key component of many mental health programs,
spurred by the growing recognition of the value that people who share
the same experiences can bring to mental health services. In Georgia and
a few other states, peer support is a Medicaid-funded service, provided
either in a freestanding peer support center or as part of an existing
clinical program. Beth Filson, the project manager of the Georgia
Certified Peer Specialist Project, sees the value of the project as

Restoring a person's belief in themselves, so that they can face the
problems that all individuals deal with on a daily basis. We teach them
skills to problem solve, and then link them to natural supports in the
community. Then, if people feel empowered, they feel that they are the
masters of their own destiny.[^75]

The expansion of Medicaid funding to peer support services is a
milestone that needs to be studied and replicated. However, essential to
extending Medicaid funding to cover the services of peer support
specialists is an accompanying ongoing transformation of the mental
health system to a recovery-based model, so that the peer specialist
expertise is utilized to its full extent. Without such an understanding,
there is a risk that peer support specialists could be seen as "junior
clinicians" within a medical model paradigm, rather than as bringing a
new kind of expertise that promotes recovery.

When people with psychiatric disabilities become involved with self-help
programs, often that is the first time they have heard about the
possibilities of recovery and self-determination. Emily Hoffman, the
state network coordinator of On Our Own of Maryland, describes the
differences in approach:

Psychosocial rehabilitation and residential programs have a tendency to
keep people dependent on those programs. They can make it hard for
people to move on in their recovery process. Some are better than
others, but folks in those programs are separate from the community. For
example, they get transported by vans in groups to do their shopping,
which is not the way most people shop. The programs don't seem to help
people move ahead to truly integrated living. When people come to one of
the On Our Own drop-in centers, on the other hand, many of them say that
they've been told in the programs that they're not capable of truly
integrated living. For example, a person may talk to a counselor in a
traditional program about getting a job, but will often be told "you're
not ready" or "you might want to think twice." It comes down to
respect---they don't seem to respect individual choices.

When On Our Own presents workshops on recovery and we tell people, for
example, that there are ways to continue to get benefits while getting a
job, the reaction is often "this is the first time anyone has listened
to me and respected my opinions and choices," because some of these
programs actively discourage people stretching themselves and taking
risks. Some people have been in these programs for years and years,
which is a form of mini-institutionalization.[^76]

The Freedom Center in Northampton, Massachusetts, is an example of a
grassroots, independent program run by psychiatric survivors that
receives only minimal funding, yet has developed a number of alternative
programs to assist people to achieve their self-determined goals. The
Freedom Center offers innovative approaches such as yoga classes and
acupuncture, provides peer-run programs, helps people to find housing,
and advocates for a noncoercive mental health system in which people are
free to make their own choices about the kinds of treatment they want.

Oryx Cohen, one of the founders of Freedom Center, describes how the
project started:

There were a few of us who were not getting what we needed out of the
traditional mental health system. We didn't know what we were doing when
we started, but we knew we wanted something different. It started with
me, Will Hall, and a few others. We wanted to combine support and
activism. The movement had been pretty strong with activism from back in
the '70s, but we really wanted to combine the support aspect. A lot of
people we ran into wanted to do activism, but others just wanted
emotional support. So we tried to do a combination. We started a monthly
support group in the fall of 2001. The group was run by\
peers. Now it's every week---it's been weekly for a few years now.
Anywhere between 6 and 30 people come to the group---an average of 12 to
15. There\
are some core people and "veterans," but the membership changes. We met\
in a church. Now we meet in the Quaker Center; we've been there for a
few years. We rent the space.

Everything the Freedom Center does comes from the membership. There are
no paid employees: all volunteers. We have a collective set up that
makes the key decisions. To join the collective a person has to be a
member for at least six months, attend the monthly organizing meetings,
and then get voted in by the rest of the members.

There was a slow transition to other activities besides the support
group. The first thing was yoga; a lot of people were looking for
alternatives to day treatment or medications. We decided to start a yoga
class, because people couldn't afford commercial classes. We've been
doing that for about four and a half years. We raised some money
(private foundations and individual donations) to hire a teacher. We get
some money from the City of Northampton. Our total budget is about
\$10,000 per year. We are hoping to start another class because the
current class is so big.

Then we started an acupuncture clinic. We offer these programs to
everyone in the community, not just our members. We're trying to break
down labels and promote community integration. The person who does the
acupuncture is a licensed acupuncturist who does ear acupuncture. We
have gotten a lot of publicity---a big article in the local paper on our
acupuncture clinic. About 20--25 people come each week---we've had as
many as 50! At the start of each class we announce what the Freedom
Center is and the work we do. We don't ask people whether they are
people with the "lived experience" or not.

We also do events---we've invited speakers on various mental health
issues. We've had as many as 200 people show up for those events. We
also get new people through these events who are interested in getting
more involved. Because we don't have paid staff, sometimes we can't
respond to all the inquiries and e-mails. We also have a weekly radio
show on a local grassroots community radio station. We've been doing
that for about two years.[^77]

New Hampshire is an example of a state that has provided significant
funding for peer self-help programs for mental health consumers. Lenora
Kimball, executive director of Stepping Stone and Next Step Peer Support
and Crisis Respite Centers, which has offices in Claremont and Lebanon,
New Hampshire, describes the program:

New Hampshire's peer support program is based on a nonmedical model.
Individuals behave very differently here in the Center in their
relationships than they do when they are with their case managers or
other people who have authority over them. In the Center, they are more
dynamic, more expressive,\
the conversations are about more everyday things (not just focused on
mental illness or problems). People are less critical of themselves in
the Center with\
their peers.[^78]

Kimball, like many people who work in the consumer movement, has her own
story of personal success through self-help:

. . . In the Center I was treated as if I could make my own decisions,
and that helped me to be able to make them. I got a lot of support, to
the point where I began working for the Center, and eventually was hired
as the director.[^79]

People in self-help programs are allowed to proceed at their own pace
and to take as much time as they need to develop trust. Kimball
describes one member:

One of our employees is a woman in her fifties. She was
institutionalized as a teenager and was in the system for many years.
Eventually she got out, and about five years ago she came to Next Step.
She wasn't sure what to think about us, and it was very gradual---at
first, she would just come into the parking lot, before ever coming
inside. Eventually she became involved and, after awhile, got a job in
the Center. In the year before she became involved, the state spent over
a million dollars on her care because of multiple hospitalizations and
other services. Her involvement in the Center totally changed that---now
she uses a very small amount of mental health services. She has
responsibilities at the Center, is getting an education, has a place to
live, friends, and feels good\
about herself.

The environment is key---it's an educational, nonjudgmental environment,
where people can risk new behavior. They can do things badly, but then
say, "I will try again." We hold people accountable for their actions.
Conflicts sometimes arise, and they are addressed and dealt with. People
are endlessly surprised that when they respectfully communicate
something about other's behavior that they don't like, it is received in
a nonjudgmental way. This teaches people, often for the first time, that
they can change their behavior, and gives them the motivation to do so.
The peer support sites are the "practice fields" for people to try new
things. We teach people skills and give them an arena to practice.[^80]

The program also includes a crisis respite program, which provides
services to people who might otherwise have to go into hospitals, based
completely on peer support. One component is a "warm line"---a telephone
line staffed by peers that people can call just to talk, if they are
feeling lonely or if they think they need some extra support. This is a
different model from a "hot line," which is usually operated by mental
health service agencies and is focused on crisis. While hot lines
discourage people calling just to chat, warm lines are set up for
precisely this purpose, since loneliness and isolation are some of the
major problems people face as they attempt to live in the community.
People use the warm line not only when they are facing difficulties, but
also when good things are happening in their lives. The warm line is
confidential, with no records kept except for utilization statistics.

Another component of New Hampshire's program serves people in crisis,
who might otherwise be hospitalized:

Our crisis respite program is amazing. We have two locations---each is
in a house in the community. It's not an institutional setting. There
are two rooms, each with one bed (one is handicapped accessible). Any
New Hampshire resident is eligible, at no cost to them; out-of-state
people can use the service for the actual cost, which is approximately
\$200 a day. People can stay in the house for up to seven days. It's an
alternative to hospitalization for people when they're in crisis. It's
not a place as much as it is a philosophy: crisis is seen as an
opportunity for change. It's not a time to be nurtured and pampered, but
a place where, with support, you can discover things about yourself so
that you can change your life. There is a crisis respite team that
provides support. Most people, when they come into the program, say that
they want to stay for the full seven days, but in fact people stay, on
average, three to four days. Sometimes when people come in they are
suicidal, but they are assisted to develop a self-care plan---even in
these difficult situations many people may leave in a day or two. Some
people used to come cyclically, every month or six weeks, but they get
challenged: "What can you do differently?" And they have changed and
don't come back as often. The cost to the state is much less than it
would be to stay in a hospital unit, and, for many people, we are
helping them to break the cycle of repeated hospitalizations. It saves
the state money, and it helps people to have different and much more
satisfying lives.

Eligibility is determined by a crisis respite interview. This is a
meaningful, deep conversation with one of the crisis workers, which
builds a personal connection. It's very different from when a person
comes into a hospital, where they are often not asked very much about
themselves---and not listened to. Our focus is on what the person's life
is like when they are feeling good, what they like, what their
experiences are in crisis, what they need, what they don't want, and
what is meaningful to them. The membership rights and responsibilities
are made clear---they can come and go as they please; they are not
allowed to come back under the influence of alcohol or street drugs
(they will be told to leave if they do); they can go to work during the
day, or take care of their kids, or anything else they need to do; but
they come back to spend the night and get the support then. If they have
a pet at home, they can bring the animal with them. This is a major
issue for a lot of people who are very attached to their pets and face
additional stress when they are hospitalized because they don't know who
is taking care of their animal.

The program is not about "protecting" people and "controlling symptoms."
If a person takes medication, it is their choice and their
responsibility. We have a locked cabinet where people can keep their
medications, to which they have\
the key. If they want, staff will remind them to take their medication,
but it's\
their choice.

It's amazing how many people who have been in the system for a long time
don't have the most simple skills, like how to do laundry. (A lot of
people don't know how to do this because their case managers do it for
them.) So we teach them how to do it, and other things they need to take
care of themselves. Cooking is another thing---we don't serve them
meals, but instead the respite workers cook and eat with the
guests.[^81]

[]{#__RefHeading___Toc193011719 .anchor}Networking and Education for
Peer Support

Each year since 1985, with funding from the Community Support Program, a
conference called Alternatives brings together hundreds of mental health
consumers from all over the country involved in self-help projects. The
program for Alternatives 2006, held October 25--29 in Portland, Oregon,
featured dozens of workshops, presented by self-help participants, on
such varied topics as "Life Beyond Recovery: Programs and Services Are
Just Not Enough!" "Valuing Our Diversities at Self-Help Centers,"
"Understanding Barriers for Latinos in Recovery," "From Relief to
Recovery: Role of Peers in Disaster Relief," "A State Hospital's Journey
to Recovery," "Teamwork and Collaboration: A Project for the Peer
Specialist Certification Program in New Mexico," "Consumer Operated
Programs and Evidence-Based Practices: A SAMHSA-Funded Implementation
Resource Kit," "Using the Arts for Healing and Personal Transformation,"
"Achieving Recovery: Peer-Run Programs That Leave No One Behind,"
"Working While Maintaining Social Security and/or Medicaid Benefits,"
and many others. The Alternatives conferences have been a valuable tool
in the growth\
and development of peer-operated programs and have provided
opportunities\
both for individual growth and for organizations to increase their
levels of competence and sophistication. Alternatives 2007 is scheduled
to be held October 10--14 in\
St. Louis, Missouri.

Attending an Alternatives conference has been a mind-changing experience
for hundreds, if not thousands, of participants over the years. Many
have gone home to educate their peers about what they have learned and
to found new support groups and self-help projects. The opportunity to
learn from others who have experienced recovery and have improved their
own lives is a dramatic example of self-help and peer support in action.

Organization of the annual Alternatives conference is rotated among the
three consumer technical assistance centers funded by SAMHSA: the
Consumer Organization and Networking Technical Assistance Center
(Charleston, West Virginia), the National Empowerment Center (Lawrence,
Massachusetts), and the National Mental Health Consumers' Self-Help
Clearinghouse (Philadelphia, Pennsylvania). These centers provide
valuable information and assistance to individuals and organizations
concerning self-help, empowerment, and recovery. The centers are
operated and controlled by people who have experienced psychiatric
disability.

[]{#__RefHeading___Toc193011720 .anchor}Provider-Run Programs That
Promote Recovery

In Colorado, state-funded mental health services are provided through a
managed care company, Value Options, which has changed from programming
that promoted maintenance to recovery-oriented services. Dr. Edward
Knight, vice president for recovery at Value Options (himself a person
who has recovered from mental illness), oversees eight programs funded
by Value Options across the state, some of which have been described in
Chapter Four.

Another Colorado program is the Pikes Peak Mental Health Center in
Colorado Springs. This mental health center shifted from employing
clients in a traditional sheltered workshop program to providing
competitive employment through Aspen Diversified Industries. As Dr.
Knight describes:

They do competitive employment by starting businesses. Each business has
to make a profit, or at least break even. A construction company, for
example, competes with other construction companies in Colorado Springs.
They also operate a maintenance company, a catering company, and some
others are economically viable. In a sheltered workshop environment, the
agency double collects---they collect from the state vocational program
or Medicaid program, and they also collect from the companies they
subcontract with. They never encourage individual decision making or
responsibility. Aspen Diversified Industries is not a sheltered
workshop. They have a training program so people can learn skills, a
computer program, for example. They will train the client, or get
training for a client in a skill that the client wants to learn, rather
than just assigning people to a "slot." The workforce is not all mental
health clients; they also hire people with other disabilities, and also
poor people going back to work. It's very heterogeneous, and promotes
integration. 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.[^82]

This approach has even been successful with a segment of the population
considered difficult to treat---people with both mental health histories
and involvement with the criminal justice system, where an Assertive
Community Treatment (ACT) model has been adapted to promote choice and
recovery. ACT is defined as "a team treatment approach designed to
provide comprehensive, community-based psychiatric treatment,
rehabilitation, and support to people with serious and persistent mental
illnesses such as schizophrenia."[^83] While proponents of ACT speak of
it as a voluntary program, some researchers and many program
participants find it to be coercive.[^84]

As Dr. Knight describes the program,

There's a criminal justice ACT team in Alamosa, Colorado. Dave Hayden,
the man who runs it, doesn't believe in force. Instead, he runs the ACT
team by helping people get what they want out of life. They work
together with a recovery center and a case management unit, all in
Alamosa, which all share this philosophy. This ACT team is one of three
criminal justice teams in Colorado, but it's very different. We have
found that for people served by the teams in Boulder and Denver, their
employment level goes down. In Alamosa, it goes up. This is dealing with
a difficult population, but about 35--55 percent are working, and about
80--85 percent are living independently. Dave has to do this balancing
act, between preventing people from being yanked back into prison, on
the one hand, and intervening without force, on the other, to help
people get what they want. He is constantly problem solving and is great
to work with.[^85]

Dr. Knight has found that Value Options has made a real commitment to
funding approaches based on recovery and empowerment:

I get more support working here, in a private profit-making company,
than I ever got working for the New York Office of Mental Health. The
owner of the company really believes in empowerment and recovery, and
takes personal risks to support it. He's willing to make decisions that
could cost him money to back consumer empowerment. My boss is a
psychiatrist, but he is the rare one who believes in recovery. So I work
in an extremely supportive atmosphere.[^86]

Another example of a program that has implemented a comprehensive
approach is\
the Life Link in Santa Fe, New Mexico. Raymond Anderson, the director of
operations and training, describes how different services work together
to address clients'\
multiple problems:

It takes good wrap-around services, not just treating the client as if
they are just one particular thing. We help people with housing,
employment, or getting a GED or other forms of education. We have a
psychiatrist, therapists, peer supporters, and case managers. Case
management is the glue that holds everything together. When you have a
team approach, when you have an agency that works together on all
fronts, it helps the clients move forward, because they are being looked
at from so many different angles.

We have a psychosocial rehabilitation program. Our psych rehab counselor
draws up schedules for different classes the clients can take, like
money management or ways toward healthier living. If someone wants to
get a\
GED, she helps with that. It's very individualized, based on what the\
person's goals are.

We have peer supporters---mental health clients who learn how to take
care of other mental health clients. It's different from case management
in that it involves giving support from people who have shared the same
experiences. We have peer support training so that people can learn the
skills needed.

It dovetails with our therapy programs. We do mental health and
substance abuse counseling together; our counselors are trained to do
both. This way, the client isn't caught in the middle between programs.
We see the client as one person and help them whatever way we can,
addressing both problems. That's what we find works.

Case management is really important. Our therapists have time to do
therapy, because the case management component is really strong. The
case managers take folks around to help them get benefits, jobs,
housing, medications---whatever they may need. That undergirds therapy.
Folks can get just case management if that's what they want. Dealing
with government agencies and paperwork can be really daunting, more so
if you're depressed or hearing voices. So it's good to have a case
manager to get you through all of that.

We have an employment specialist who helps clients to do job searches,
teaches them how to interview for a job, \[and\] walks through the
beginning rungs with them. It's important for anyone, for self-esteem,
to be able to earn a buck. Even if it's not a whole lot, that buck is
yours. For some folks, it's very embarrassing not to have any kind of
work. Even if it's part time, at least that's something.[^87]

[]{#__RefHeading___Toc193011721 .anchor}Innovative Uses of Medicaid
Funding

A number of states have developed innovative models for using Medicaid
funding to provide recovery-oriented services. These models are
important because Medicaid, as a federal program, can be used in all
states to implement and fund these approaches. Oregon's use of Medicaid
funding to provide personal assistance services has been described
above. Another innovative use of Medicaid funding is provided by
Michigan, which has redefined "medical necessity" as including
"community integration," making Medicaid funding available for a wide
variety of recovery-oriented services that would not otherwise be
Medicaid eligible. Under the Deficit Reduction Act of 2005, there are
increased opportunities for innovative uses of Medicaid funding.

Another example of an innovative use of Medicaid funding by Oregon is
individualized budgeting, which allows people diagnosed with mental
illness to control a budget to purchase their own services.
Individualized budgeting is a funding methodology that has been used for
people with other disabilities to give them greater control over the
services they receive. Its use has been promoted for people with
developmental disabilities, as a tool toward community integration and
independence. As Agosta\
has found,

Adults with developmental disabilities want control over their lives.
They also want to live in the community, work, have friends, be healthy,
and stay safe. They want to live life just like any other citizen.
Expectations like these are fueling a steady shift in service systems.
Community systems are increasingly offering services that promote
integration and self-direction. These approaches also provide greater
opportunity for service recipients to have extensive control over
managing their own services.[^88]

This approach, while widely utilized in the developmental disability
field, has not been used as widely in psychiatric disability. However,
some models exist that illustrate its applicability to this population.
Oregon provides a model for providing individual budgets. Empowerment
Initiatives, Inc. (EI), in Portland, Oregon, is an agency run by mental
health consumers that assists people with psychiatric disabilities in
purchasing services. Adrienne Young, the EI executive director,
describes the program as

\[A\] brokerage model, providing up to \$3,000 for each individual in
our program, combined with person-directed planning and community
resources. We help the person work toward their dream and life goals and
help them in their mental health recovery. We also run a 10-week,
6-hour-a-day training program for people to learn about their own
recovery and how to help others recover. This program is called
SPIRIT--Service Provider Individual Recovery Intensive Training. We do a
two-month support group follow-up to help people get jobs in the
community, mostly within the program but also in the wider
community.[^89]

[]{#__RefHeading___Toc193011722 .anchor}Person-Centered Planning

Person-centered planning is a key tool in reframing services so that
they are under the individual's control and meet the individual's
self-defined needs. Agosta defines person-centered planning as "a
process that is directed by the individual (and with the individual's
consent, family and support network members as well) to assess his or
her strengths, preferences, capacities, and needs, and to specify the
supports that must be offered to address those needs."[^90] Once again,
this is a tool that has been more widely used to address the needs of
people with general medical and cognitive disabilities rather than
psychiatric; however, Michigan has made person-centered planning and
community integration the focus of its mental health delivery system.

As described by the Community Mental Health Services (CMH) of Muskegon\
County, Michigan,

Person-centered planning is all about your hopes and dreams. You and the
people who are important to you talk about your life: Where do you want
to live? How do you want to spend your day? How do you express your
spirituality? Where do you want to work, volunteer, or go to school? Do
you want supports (i.e., guardianships, financial payee) in areas of
your life? Person-centered planning respects and honors cultural
differences and targets your strengths.

Person-centered planning puts the consumer in charge, is about making
choices, builds on your strengths, identifies resources at CMH and in
the community, lets you choose who will help you build your plan, and
addresses health and safety issues.

CMH lists five elements of person-centered planning:

1.  Pre-planning activities: this is when you choose who will facilitate
    your meeting, if you will use a self-determination plan or not, who
    you want to be at the meeting, the topics you wish to talk about,
    where the meeting will be held, and what time is best to hold the
    meeting. Planning for your needs right now and for things you will
    need in the future.

2.  Changing your plan when your wants or needs change.

3.  Making sure all of the people you count on work together.

4.  Asking for your opinions so the plan is about your dreams and goals.

5.  Changing your plan when your wants or needs change.[^91]

[]{#__RefHeading___Toc193011723 .anchor}Self-Determination

The basic unifying principle of all the programs described in this
chapter is self-determination. Tom Nerney, executive director of the
Center for Self-Determination, defines this concept as having five basic
components:[^92]

-   Freedom: to choose a meaningful life in the community

-   Authority: over a targeted amount of dollars

-   Support: to organize resources in ways that are life enhancing and
    meaningful to the individual with a disability

-   Responsibility: for the wise use of public dollars and recognition
    of the contribution individuals with disabilities can make to their
    communities

-   Confirmation: of the important leadership role that individuals with
    disabilities and their families must play in a newly redesigned
    system and support for the self-advocacy movement

Specifically, Nerney has recognized the applicability of the
self-determination\
model, originally developed for people with developmental disabilities,
to the mental health field:

Self-direction shifts the power in treatment and recovery plans from
providers and professionals directly to the individual who experiences
mental illness or the family of a child with serious emotional
disturbance. Self-direction facilitates the development of personal
goals and objectives that allow the individual or family to control the
public and private resources necessary to purchase those supports and
services central to the success of the plan. The individual's goals and
objectives are used to design a plan to recovery. In this paradigm
shift, professionals and providers become helpers and resources for the
person, rather than the ones who narrowly define treatment options and
press individuals with disabilities to select those options. Ideally,
this fundamental change in power recognizes the primacy of the person
who experiences the disability and changes the role of providers to a
more respectful role that honors personal plans of recovery. Peer
support can become another resource for individuals who need assistance
in formulating and purchasing their unique plans of recovery.[^93]

Bringing together the concepts of self-determination and recovery, the
mental health field is in the process of transformation to a truly
consumer-directed field, as the President's New Freedom Commission on
Mental Health strongly recommended. This transformation will not be
easy; changes may contradict many long-standing practices and beliefs in
the mental health field. However, if redesigned and implemented
effectively, changes will lead to a mental health service system that
truly meets the self-defined needs of people with psychiatric
disabilities.

[]{#__RefHeading___Toc193011724 .anchor}Recommendations

**Recommendation Ten**\
Congress should provide sufficient appropriations to the Department of
Education's Office of Special Education and Rehabilitative Services,
Rehabilitation Services Administration (RSA), for the expansion of IL
services, rather than the decrease in funding that has occurred. With
adequate funding, RSA can be tasked to explore, plan, and implement
expansion of IL services to people with psychiatric disabilities. A part
of the IL program goals at the federal level should focus on supporting
and monitoring state-level collaboration that includes IL staff and
mental health consumer leadership. Program objectives and indicators
should be developed and tracked to ensure that otherwise-qualified
individuals are not excluded from IL programs because of the nature of
their disability.

**Recommendation Eleven\
**Congress should provide a secure funding stream, analogous to that
provided for IL centers through the Rehabilitation Act of 1973, as
amended, that supports self-help programs for mental health consumers,
the annual Alternatives conference, and the consumer technical
assistance centers.

**Recommendation Twelve\
**Through the Centers for Medicare and Medicaid Services, HHS should
develop methodologies and funding streams to expand the availability and
applicability of consumer-controlled personal assistance services to
people with psychiatric disabilities. Oregon, which has made PAS
available to people with psychiatric disabilities on the same basis as
people with other disabilities, should serve as a model.

**Recommendation Thirteen\
**Congress should authorize and HHS should implement changes in Medicaid
policy and regulations to allow a much wider variety of
recovery-oriented services to be eligible for Medicaid funding than is
currently available. The agency should examine and consider the merits
of existing models, for example, the Michigan state model of reframing
the definition of "medical necessity" to include "community
integration," and shift funding to services based on "person-centered
planning."

**Recommendation Fourteen\
**Congress should enact legislative and/or policy changes that enable
adoption of promising practices demonstrated at the state and tribal
levels and authorize

-   Medicaid administrators to use person-centered approaches. HHS
    should examine Michigan's state model of shifting to funding
    services based on\
    person-centered planning, incorporating the consumer's goals into
    Medicaid-eligible services.

-   Medicaid and vocational rehabilitation changes in budget practices.
    HHS should investigate the state models in Oregon and Florida that
    make individual budgeting available for people diagnosed with mental
    illnesses, as the federal provisions already allow for people with
    other disabilities.

-   Medicaid changes in clinical supervision requirements. HHS should
    study models established by several states---including Georgia,
    South Carolina, Hawaii, Pennsylvania, and Michigan---to fund peer
    specialists, i.e., change the clinical supervision requirements to
    enable peer specialists to perform their unique services, so that
    peer support is available to people with psychiatric disabilities in
    all states.

[]{#__RefHeading___Toc193011725 .anchor}Chapter Seven: Other Barriers to
Inclusion in Livable Communities

As has been described, people with psychiatric disabilities face
numerous difficulties as they attempt to live self-directed lives. This
chapter will present some of the barriers that have not been addressed
in earlier chapters, including special problems of people in rural
areas, and access to general medical care.

[]{#__RefHeading___Toc193011726 .anchor}People Living in Rural Areas

Having a psychiatric disability presents a number of problems for people
living in rural areas that are not faced by people in urban areas.
Services may not be readily available, both those provided by
professionals and peer support. Getting to any kind of service may
require traveling long distances, which can be especially difficult
because of the lack of public transportation in rural areas, and the
fact that many mental health clients don't have their own cars.

There is some evidence that stigma is even more of a problem for people
with mental health difficulties living in rural areas than it is in
cities, which offer a far larger degree of anonymity. An issue paper
prepared by the National Rural Health Association[^94] found that
although the prevalence of psychiatric disorders is similar in rural and
urban areas, a complex web of factors makes it more difficult for people
in rural areas to receive appropriate services. Among the factors cited
were high stress levels attributed to endemic economic difficulties for
rural populations; inadequate numbers of treatment personnel at all
levels; ingrained cultural beliefs that make people reluctant to seek
help; and the fact that, even when they do, they usually frame their
distress in general medical terms and seek out general medical
practitioners who are often unequipped to deal with psychiatric issues.

Isolation, which is a problem for many people with psychiatric
disabilities, may be especially acute in rural areas. In fact, the
National Rural Health Association paper found that many rural people
actually prefer to travel to cities when they seek mental health
services, taking advantage of the anonymity offered by cities to avoid
their problems becoming known to neighbors and friends. The paper also
highlighted a complex set of cultural beliefs among rural populations
that require practitioners to become culturally competent to serve this
population, just as cultural/linguistic competence is necessary for
people from diverse racial and ethnic groups.

The association also recognized the value of self-help groups and urged
that funding be made available to support the availability of
consumer-run services. Such programs can be especially valuable in rural
areas because of the general unavailability of professional services, as
well as people's reluctance to identify themselves as needing mental
health services.

Many self-help organizations in states with large rural populations have
been actively involved in trying to bring self-help into rural areas.
For example, Linda Corey, the executive director of Vermont Psychiatric
Survivors (VPS), points out many efforts that VPS makes to reach people
who live in the countryside:

The number one problem facing people in rural areas is
transportation---getting people around. There is not much public
transportation, and a lot of people don't have cars, so we try to
provide peer-to-peer transportation. We will reimburse mileage, so if
one person has a car, we link them up with other people who don't, so
they can get to meetings and events. We convinced the state to pay for
transportation reimbursements, explaining that people needed to get to
meetings. When there is a meeting that involves both professionals and
consumers, we ask the professionals to provide the transportation.

Mental health clinics are not as skillful as we are at linking up people
with transportation. We try to get people to events, meetings, to visit
their friends in hospitals, as well as just to get out into the
community, to go have coffee with others, and similar social
opportunities. Some people say these kinds of support have helped to
keep them out of the hospital. We take people to visit their friends who
are still hospitalized. Recently, a bunch of people got together, loaded
up their cars, took them all to the state hospital to celebrate the
birthday of a person in the hospital. So the person knows that they're
not forgotten, which helps to build their sense of hope.

Isolation is another major problem. Services, both professional and
peer, are usually in the towns and cities, so they're not very
accessible. So, again, we are trying to link people with cars to those
without, and reimburse the cost of mileage. For those who have Internet
access, this is a good way to provide peer support, but a lot of people
don't have computers or don't know how to use them, so we do a lot of
phone conferences. The state pays the cost. Also, our warm line is very
well utilized.

Stigma is higher in rural areas---small towns where everyone knows
everyone else's business. This can work both ways: sometimes it helps
because the townspeople know the person and see them as an individual,
not as a mental health client, but sometimes it cuts the other way.
Three communities have rejected having any kind of peer programs set up,
claiming it will hurt tourism, or other excuses are given.[^95]

Doug DeVoe, executive director of Ohio Advocates for Mental Health,
finds similar difficulties in his state:

A lot of Ohio is in Appalachia. There's a lot of poverty. There is no
public transportation. A peer center could be 60 or 100 miles away, so
without a car people can't get there. Even when people have cars, the
cars tend to be older, less reliable cars that may not run in the
winter. The price of gas is also a factor that makes it difficult to
travel long distances.

Health care in general is hard to find. Doctors are few and far between.
In rural areas, the doctors often don't speak English as their primary
language. So there is often a language barrier between doctor and
patient. So trying to describe symptoms regarding stress or depression,
for example, is quite difficult. It may be just a rural legend, but the
story is told of one doctor who tried to commit someone because she
described being nervous as having "butterflies in her stomach" and he
thought she was having delusions!

It's also been hard to set up peer centers in rural areas. When we do
find a building that's available, it's usually an old house that's not
physically accessible, is hard to heat, has poor plumbing, and other
problems. A lot of our clients have accessibility issues---many people
are obese, they have movement disorders caused by the drugs, and
problems like that, so buildings with steps and nonaccessible bathrooms
aren't very useful for us.[^96]

Transportation presents problems not only for people in rural areas, but
for many other people with health service needs as well. However, the
issues are compounded by geographical location and other factors. For
example, because so many people with psychiatric disabilities are poor,
car ownership is low, and except for large cities, public transportation
is often inadequate if it exists. So getting to a doctor's appointment,
a self-help group, or any other service becomes complicated. When a
person is dealing, for example, with depression or other emotional
difficulties, any obstacle---including transportation barriers---can
seem insurmountable.

Even when public transportation is available, there are often barriers
to its use. Workers at advocacy programs frequently hear from people
with psychiatric disabilities who face discrimination when they apply
for reduced rate passes because their disabilities are not visible. One
individual successfully obtained a pass, but told of being harassed and
ridiculed by a bus driver when she tried to use her pass. The bus driver
said loudly, "There's nothing wrong with you---you're just cheating the
system." She was so humiliated that she seldom tried again.[^97]

[]{#__RefHeading___Toc193011727 .anchor}Accessing General Medical Care

A number of barriers make it difficult for people with psychiatric
disabilities to get help with their general medical needs. Many people
with low income or living near and at the poverty level are dependent on
Medicare and Medicaid, and they face all the widely publicized
difficulties of these public benefit programs compounded by having
mental illnesses. As an example, one study found the following:

New Mexico implemented Medicaid managed care for both physical and
mental health services in 1997. The reform led to administrative
burdens, payment problems, and stress and high turnover among providers.
Restrictions on inpatient and residential treatment exacerbated access
problems for Medicaid recipients. These facts indicate that in rural,
medically underserved states, the advantages of managed care for cost
control, access, and quality assurance may be diminished.[^98]

It is quite common for people with psychiatric disabilities who seek
care for general medical problems to receive disparate treatment.
Sometimes providers attribute symptoms to people's mental illnesses,
rather than investigating their complaints.

People come to mental health professionals with the expectation that the
cause of their problem will be identified. An underlying medical illness
that is unrecognized and treated with only psychological interventions
will likely contribute to a downward spiral of the person's health.
Being aware of the most common masked medical illnesses that present
with psychological or behavioral symptoms should be the responsibility
of all who work in the field of mental health care. Indeed, our patients
have a right to expect nothing less.[^99]

The available data also shows that people diagnosed with mental
illnesses die prematurely from multiple causes. People with psychiatric
disabilities experience heart disease, diabetes, obesity, high blood
pressure, and other severe medical problems in disproportionate numbers
compared to the general population. Coupled with the difficulties
experienced in accessing general medical care, it is not surprising to
find high rates of morbidity and mortality, which present a crisis
requiring multiple approaches.

Many medical providers present the same sorts of stigmatizing attitudes
as the general population. The providers often treat people with
psychiatric disabilities as people who are unable to articulate their
needs, to follow medical instructions, or to practice basic self-care.
Coupled with the limitations on access to care because of lack of health
insurance and the inadequacies of Medicaid funding, there is a pressing
need for all providers and consumers to open lines of communication in
order to improve access to services and to address mutual
misunderstandings.

One of the ways that people with mental illnesses are segregated from
their communities is in health care. The Institute of Medicine's (IOM)
2006 report, *Improving the Quality of Care for Mental and Substance-Use
Conditions,* calls for integration of the mental health system and the
general medical system.[^100] The IOM says this is necessary to improve
the quality of health care for all Americans. Such an approach would
offer some hope of changing the dismal fact that people with mental
illnesses who are served by our public systems die an average of 25
years younger than the general population. It would also be a big step
in the direction of community integration. And while the IOM did not
suggest this course of action to reduce stigma, integration would
automatically remove the stigma of being served in a mental health
system. A recommendation could be for SAMHSA (or the National Institute
of Mental Health) to provide grants to develop pilot sites that fully
integrate mental health and general medical care.

[]{#__RefHeading___Toc193011728 .anchor}Recommendations

**Recommendation Sixteen\
**Further research is needed to identify the special problems of people
living in rural areas and to promote best practices that address these
needs, with a particular focus on self-help and peer support. Within
HHS, the Services Research Branch of the National Institute of Mental
Health should initiate a dialogue with other federal agencies with rural
area programs, such as the U.S. Department of Education's Office of
Special Education and Rehabilitative Services and the Department of
Labor, regarding data available through existing programs.

**Recommendation Seventeen\
**The transportation needs of people with psychiatric disabilities must
be met in ways that recognize their particular problems, address stigma
and discrimination, and focus on innovative self-help approaches. The
Department of Transportation should make public a plan that ensures that
its programs directed to people with disabilities are inclusive of
people with psychiatric disabilities who live in the rural areas of this
nation.

**Recommendation Eighteen\
**The provision of appropriate general medical services to meet the
complex needs of people with psychiatric disabilities calls for a
coordinated system. Such a system would bring together the diverse
expertise of medical providers, mental heath providers, and consumers,
with particular attention to the high rates of mortality and morbidity
among this population. Within HHS, SAMHSA should take a leading role in
this effort.

**Recommendation Nineteen\
**SAMHSA and/or the National Institute of Mental Health should provide
grants to promote the development of pilot sites that fully integrate
mental health and general medical care policies, practices, and
programs.

[]{#__RefHeading___Toc193011729 .anchor}Chapter Eight: Envisioning an
Ideal Future

There is no single antidote for the current dysfunction of the public
mental health system. Clearly, visionary leadership, adequate funding,
and expansion of proven models (including consumer-directed programs)
are essential ingredients. More than these, however, there needs to be a
dramatic shift in aspirations for people with psychiatric
disabilities.[^101]

NCD's contention in its paper *The Well-Being of a Nation: An
Inter-Generational Vision of Effective Mental Health Services and
Supports*[^102] was that public mental health systems must be driven by
a value system that sees recovery as achievable and desirable for every
person who has experienced a mental illness. Systems also must commit to
serving the whole person, and not merely the most obvious symptoms. In
other words, mental health systems will have to do more than just
develop the expertise to deliver medication and counseling: they must
coordinate with other entities that address needs for housing,
transportation, employment, and other supports as well.

In an ideal world, a diagnosis of mental illness would not lead to
isolation and hopelessness, but instead would provide every diagnosed
individual with multiple pathways to recovery, based on individual
choice, self-determination, the full range of supportive services, and
all the elements of community integration described in this paper. The
vignette that closes this paper envisions how life could unfold for a
person diagnosed with a mental illness if all components were in place.

Karen is a 45-year-old woman who was diagnosed with schizophrenia in her
early twenties. The first 10 years after her diagnosis were difficult
ones---multiple hospitalizations, periods of homelessness, a loss of
hope, no vision for the future. Even when she was out of the hospital,
she was placed in a group home where no one was ever expected to get
better. She was told that she would never hold down a job or live in her
own apartment.

Things began to change when Karen started to attend a drop-in center run
by an organization of former mental health patients. For the first time,
Karen saw people who had similar histories and diagnoses, but who were
making a success of their lives. She had role models. She began to
believe she could succeed as they had done.

Karen became a volunteer at the drop-in center. This led, eventually, to
a paid part-time position. She also took part in support groups in which
people talked about their plans for the future. Slowly, Karen began to
develop her own life plan. She wanted to go\
back to college (she had dropped out when she was first hospitalized)
and to become\
a pharmacist.

Fortunately, Karen had access to a helpful vocational rehabilitation
counselor,\
through her state Department of Vocational Rehabilitation. Her counselor
supported\
her in her career goals and helped her to get the financial aid she
needed to complete her education.

The mission of the state Department of Mental Health was to help each
individual to define and then realize his or her own goals, with
supports of the person's choosing. The mental health service workers who
worked with Karen were also helpful and supportive. When Karen had
setbacks, rather than telling her she was trying something "too
stressful," they encouraged her to stick to her life plan, even when she
had to drop out of college for a semester.

Her psychiatrist was helpful, also, working with her to find the right
combination of medications that controlled her symptoms without causing
her to be drowsy or have other side effects that interfered with her
studying. When her symptoms were well under control, Karen decided to
try to go off medication, and her psychiatrist worked with her to slowly
reduce the dose. Eventually, Karen decided to remain on a very low level
of one medication that she found helpful. After several years, she was
able to stop taking even this medication, and now takes another
medication occasionally when she experiences an increased level of
symptoms. Her psychiatrist is always available to support her in her
choices.

Her participation in the self-help group was also a big part of her
continuing success. She could always count on the group members for help
when she felt discouraged or overwhelmed. And a big contribution to her
own growing sense of empowerment and recovery was when other group
members began to point to her as a success story, as a role model for
newer members of the group.

Karen was assisted to make the transition from benefits to work through
helpful programs that gradually decreased her cash benefits as she
increased her income. She also was able to purchase health insurance at
an affordable rate, without being discriminated against because of her
past psychiatric history.

Karen was able to move into her own apartment through a program that
provided a subsidy while she was still in school, which was gradually
reduced as she became a wage earner. When Karen graduated and applied
for pharmacy jobs, strong antidiscrimination laws assured that her past
psychiatric history was not held\
against her.

Karen continued to have difficulties from time to time, but through a
combination of professional and self-help supports, and the occasional
use of medication, she learned to manage so that the difficulties did
not interfere with her life goals. She found it extremely helpful when
she stopped thinking of the problems she encountered from time to time
as "symptoms," and instead saw them as the same kinds of problems other
people, who had never been diagnosed with a mental illness, faced in
their own lives.

As she made various transitions---going back to school, moving into her
own apartment, getting a job---she was able to use her support system
whenever she began to doubt her own ability to succeed. She felt a
growing sense of self-confidence and empowerment and began to see
herself as a person capable of living her dreams.

Through friends she made in the self-help program, Karen also had a good
social life. She began to take part in various aspects of her "livable
community": she joined a local church and became active in several
committees. One of her hobbies, knitting, led her to a group of knitters
who met weekly for friendship while they worked on their crafts
projects. In both her church and the knitting group, at first Karen
concealed her psychiatric history, but at a point when she felt
comfortable talking about it, she did so---and was met with
understanding and a deepening of her natural support system.

Number range CHAPTER[]{#__RefHeading___Toc193011730 .anchor}Appendix

Mission of the National Council on Disability

Overview and Purpose

The National Council on Disability (NCD) is an independent federal
agency with 15 members appointed by the President of the United States
and confirmed by the U.S. Senate. The purpose of NCD is to promote
policies, programs, practices, and procedures that guarantee equal
opportunity for all individuals with disabilities, regardless of the
nature or significance of the disability, and to empower individuals
with disabilities to achieve economic self-sufficiency, independent
living, and inclusion and integration into all aspects of society.

Specific Duties

The current statutory mandate of NCD includes the following:

-   Reviewing and evaluating, on a continuing basis, policies, programs,
    practices, and procedures concerning individuals with disabilities
    conducted or assisted\
    by federal departments and agencies, including programs established
    or assisted under the Rehabilitation Act of 1973, as amended, or
    under the Developmental Disabilities Assistance and Bill of Rights
    Act, as well as all statutes and regulations pertaining to federal
    programs that assist such individuals with disabilities; and to
    assess the effectiveness of such policies, programs,\
    practices, procedures, statutes, and regulations in meeting
    the needs of individuals with disabilities.

-   Reviewing and evaluating, on a continuing basis, new and emerging
    disability policy issues affecting individuals with disabilities in
    the Federal Government, at the state and local government levels,
    and in the private sector, including the need for and coordination
    of adult services, access to personal assistance services, school
    reform efforts and the impact of such efforts on individuals with
    disabilities, access to health care, and policies that act as
    disincentives for individuals to seek and retain employment.

-   Making recommendations to the President, Congress, the Secretary of
    Education, the director of the National Institute on Disability and
    Rehabilitation Research, and other officials of federal agencies
    about ways to better promote equal opportunity, economic
    self-sufficiency, independent living, and inclusion and integration
    into all aspects of society for Americans with disabilities.

-   Providing Congress, on a continuing basis, with advice,
    recommendations, legislative proposals, and any additional
    information that NCD or Congress deems appropriate.

-   Gathering information about the implementation, effectiveness, and
    impact of the Americans with Disabilities Act of 1990 (ADA) (42
    U.S.C. § 12101 et seq.).

-   Advising the President, Congress, the commissioner of the
    Rehabilitation Services Administration, the Assistant Secretary for
    Special Education and Rehabilitative Services within the Department
    of Education, and the director of the National Institute on
    Disability and Rehabilitation Research on the development of the
    programs to be carried out under the Rehabilitation Act of 1973, as
    amended.

-   Providing advice to the commissioner of the Rehabilitation Services
    Administration with respect to the policies and conduct of the
    administration.

-   Making recommendations to the director of the National Institute on
    Disability and Rehabilitation Research on ways to improve research,
    service, administration, and the collection, dissemination, and
    implementation of research findings affecting people with
    disabilities.

-   Providing advice regarding priorities for the activities of the
    Interagency Disability Coordinating Council and reviewing the
    recommendations of this council for legislative and administrative
    changes to ensure that such recommendations are consistent with
    NCD's purpose of promoting the full integration, independence, and
    productivity of individuals with disabilities.

-   Preparing and submitting to the President and Congress an annual
    report titled *National Disability Policy: A Progress Report*.

International

In 1995, NCD was designated by the Department of State to be the U.S.
Government's official contact point for disability issues. Specifically,
NCD interacts with the\
special rapporteur of the United Nations Commission for Social
Development on disability matters.

Consumers Served and Current Activities

Although many government agencies deal with issues and programs
affecting people with disabilities, NCD is the only federal agency
charged with addressing, analyzing, and making recommendations on issues
of public policy that affect people with disabilities regardless of age,
disability type, perceived employment potential, economic need, specific
functional ability, veteran status, or other individual circumstance.
NCD recognizes its unique opportunity to facilitate independent living,
community integration, and employment opportunities for people with
disabilities by ensuring an informed and coordinated approach to
addressing the concerns of people with disabilities and eliminating
barriers to their active participation in community and family life.

NCD plays a major role in developing disability policy in America. In
fact, NCD originally proposed what eventually became ADA. NCD's present
list of key issues includes education, transportation, emergency
preparedness, international disability rights, employment, foster youth
with disabilities, vocational rehabilitation, livable communities, and
crime victims with disabilities.

Statutory History

NCD was established in 1978 as an advisory board within the Department
of Education (P.L. 95-602). The Rehabilitation Act Amendments of 1984
(P.L. 98-221) transformed NCD into an independent agency.

**ENDNOTES**

[^1]: National Council on Disability, *Livable Communities for Adults
    with Disabilities,* 2004,
    http://www.ncd.gov/newsroom/publications/2004/LivableCommunities.htm.

[^2]: National Council on Disability, *Creating Livable Communities,*
    2006,
    http://www.ncd.gov/newsroom/publications/2006/livable_communities.htm.

[^3]: The U.S. Department of Health and Human Services reported that in
    the year 2005, there were 24.6 million adults age 18 or older who
    experienced serious psychological distress (SPD), which is highly
    correlated with serious mental illnesses.

[^4]: National Council on Disability, 2004.

[^5]: National Council on Disability, 2006.

[^6]: National Council on Disability, *From Privileges to Rights: People
    Labeled with Psychiatric Disabilities Speak for Themselves,* 2000,
    http://www.ncd.gov/newsroom/publications/2004/LivableCommunities.htm.

[^7]: NCD's 2002 report, *The Well-Being of Our Nation: An
    Inter-Generational Vision of Effective Mental Health Services and
    Supports*
    (<http://www.ncd.gov/newsroom/publications/mentalhealth.html>),
    calls for fundamental reform in a mental health system in crisis.

[^8]: U.S. Surgeon General, *Mental Health: A Report of the Surgeon
    General,* 1999,
    <http://www.surgeongeneral.gov/library/mentalhealth/home.html>.

[^9]: President's New Freedom Commission on Mental Health, *Achieving
    the Promise: Mental Health Care in America,* 2003,
    <http://www.mentalhealthcommission.gov/reports/FinalReport/toc.html>.

[^10]: <http://www.prnewswire.com/mnr/adcouncil/25953/>.

[^11]: Ibid.

[^12]: SAMHSA,
    2005.<http://www.mentalhealth.samhsa.gov/publications/allpubs/sma05-4129>.

[^13]: U.S. Supreme Court, *Olmstead v. L.C.* (98-536) 527 U.S. 581,
    1999.

[^14]: SAMHSA, 2005.

[^15]: Ibid.

[^16]: D. Fisher, *Recovery: Learning About Mental Health Practice*
    (Hoboken, NJ: Wiley, Chichester, 2007, in press). The National
    Empowerment Center, a federally funded technical assistance center
    operated by people who have recovered from mental illness, has
    developed the Empowerment Model of Development and Recovery.

[^17]: http://www.independencefirst.org/about/ind_living?

[^18]: D. Hosseini, *Is Anybody Home?* (Sacramento: California Network
    of Mental Health Clients, 2004).

[^19]: Quoted in D. Hosseini, 2004.

[^20]: C. Levy, "Despite Inspection by State, Violations at Home
    Continue," *New York Times,* September 15, 2002.

    C. Levy, "Crackdown Falters as 2 Rulings Favor State Adult Homes,"
    *New York Times,* January 14, 2004.

[^21]: B. Tanzman, "An Overview of Surveys of Mental Health Consumers'
    Preferences for Housing and Support Services," *Psychiatric
    Services* 44 (1993): 450--455.

[^22]: AACP. (2001). Position Statement on Housing Options for
    Individuals with Serious and Persistent Mental Illness (SPMI).
    Retrieved February 4, 2008 from
    [http://www.communitypsychiatry.org]{.underline}

[^23]: K. Wireman, May 3, 2006, personal communication.

[^24]: While these findings and subsequent recommendations tend to move
    away from congregate housing, the notion in the NCD report (in
    *Livable Communities 2004*) of providing supportive services close
    to where people live might still be considered along the continuum
    of choices, given the call for residents to be involved in
    determining what services should be provided.

[^25]: D. Srebnik, J. Livingston, L. Gordon, and D. King, "Housing
    Choice and Community Success for Individuals with Serious and
    Persistent Mental Illness," *Community Mental Health Journal* 31,
    no. 2 (1995): 139--152.

[^26]: SAMHSA, 2003,
    <http://mentalhealth.samhsa.gov/publications/allpubs/ken98-0048/default.asp>.

[^27]: K. Fagan, 2004., San Fransisco Chronicle *Shame of the City,
    February 1, 2004*
    http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2004/02/01/MNGOC4.

[^28]: S. Tsemberis and R. Eisenberg, "Pathways to Housing: Supported
    Housing for Street-Dwelling Homeless Individuals with Psychiatric
    Disabilities," *Psychiatric Services* 51, no. 4 (2000): 487--493.

[^29]: Ibid.

[^30]: Ibid.

[^31]: "APA Awards Innovative MH Service Programs," *Psychiatric News*
    40, no. 22 (2005): 16.

[^32]: City of Seattle, *Housing First Initiative Shows Impact in First
    Six Months* (press release), December 6, 2006.

[^33]: K. Wireman, May 3, 2006, personal communication.

[^34]: Mental Health : A Report of the Surgeon General 1999.
    http://mentalhealth.samhsa.gov/cmhs/surgeongeneral/default.asp.

[^35]: Ibid.

[^36]: H. Stuart, "Mental Illness and Employment Discrimination,"
    *Current Opinion in Psychiatry* 19, no. 5 (2006): 522--526.

[^37]: Ibid.

[^38]: J. Oldman, L. Thomson, K. Calsaferri, A. Luke, and G. Bond, "A
    Case Report of the Conversion of Sheltered Employment to
    Evidence-Based Supported Employment in Canada," *Psychiatric
    Services* 56 (2005): 1436--1440.

[^39]: R. Clay, "Employment: Help for People with Mental Illnesses,"
    *SAMHSA News* 14, no. 3 (2006): 1.

[^40]: E. Crowther, M. Marshall, G. Bond, and P. Huxley, "Helping People
    with Severe Mental Illness to Obtain Work: Systematic Review,"
    *British Medical Journal* 322 (2001): 204--208.

[^41]: E. Knight, May 11, 2006, personal communication.

[^42]: Ibid.

[^43]: Ibid.

[^44]: A. Young, May 10, 2006, personal communication.

[^45]: D. C. Stapleton, B. O'Day, G. Livermore, and A. Imparato,
    *Dismantling the Poverty Trap: Disability Policy for the 21st
    Century*; working paper (Ithaca, NY: Cornell University
    Rehabilitation Research and Training Center for Economic Research on
    Employment Policy for People with Disabilities, 2005).

[^46]: B. Filson, May 13, 2006, personal communication.

[^47]: M. Ellison, Z. Russinova, J. Massaro, and A. Lyass, "People with
    Schizophrenia Employed as Professionals and Managers: Initial
    Evidence and Exploration," *Schizophrenia Research* 76, no. 2
    (2005): 123--125*.*

[^48]: J. Cook, H. Leff, C. Blyler, P. Gold, R. Goldberg, R. Clark, et
    al., "Estimated Payments to Employment Service Providers for Persons
    with Mental Illness in the Ticket to Work Program," *Psychiatric
    Services* 57 (2006): 465--471.

[^49]: L. Kimball, May 8, 2006, personal communication.

[^50]: President's New Freedom Commission on Mental Health, 2003.
    http://www.mentalhealthcommission.gov.

[^51]: G. Thornicroft, *Shunned: Discrimination Against People with
    Mental Illness* (New York: Oxford University Press, 2006).

[^52]: Ibid.

[^53]: L. Kimball, May 8, 2006, personal communication.

[^54]: J. Campbell, May 5, 2006, personal communication.

[^55]: National Council on Disability, 2000.

[^56]: On Our Own of Maryland (n.d.),
    <http://www.onourownmd.org/asp.html>.

[^57]: Substance Abuse and Mental Health Services Administration,
    *Consumer Affairs Bulletin* 2, no. 1 (1997): 1.

[^58]: L. Kimball, May 8, 2006, personal communication.

[^59]: President's New Freedom Commission, 2003, and SAMHSA, 2006.

[^60]: S. Carpinello, L. Rosenberg, J. Stone, M. Schwager, and C.
    Felton, "Best Practices: New York State's Campaign to Implement
    Evidence-Based Practices for People with Serious Mental Disorders,"
    *Psychiatric Services* 53 (2002): 153--155.

[^61]: National Council on Disability, 2004.

[^62]: J. Holtz, M. Jones, and K. Miller, *Been There, Done That: The
    Mental Health Peer Support Project,* 2001,
    <http://www.ilru.org/html/publications/readings_in_IL/mentalhealth.html>.

[^63]: Ibid.

[^64]: J. Shaw, May 21, 2006, personal communication.

[^65]: M. Oxford, June 5, 2006, personal communication.

[^66]: World Institute on Disability, *PAS: A New Millennium
    Conference,* Executive Summary (Berkeley, CA: World Institute on
    Disability, 1999).

[^67]: D. Pita, M. Ellison, and M. Farkas, "Exploring Personal
    Assistance Services for People with Psychiatric Disabilities: Need,
    Policy, and Practice," *Journal of Disability Policy Studies* 42,
    no. 1 (2001): 2--9.

[^68]: A. Dornfeld, "Innovative Oregon Program Uses 'Peer Support' to
    Assist Mentally Ill," Oregon Public Broadcasting, 2007,
    <http://www.publicbroadcasting.net/opb/news.newsmain?action=article&ARTICLE_ID=1033506>.

[^69]: Ibid.

[^70]: M. Moore, March 21, 2007, personal communication.

[^71]: A. Darling, March 25, 2007, personal communication.

[^72]: <http://www.pascenter.org/state_based_stats/state_only_funded_us.php?state=us>.

[^73]: J. Chamberlin, "The Ex-Patients' Movement: Where We've Been and
    Where We're Going," *Journal of Mind and Behavior* 11, no. 3 (1990):
    323--336.

[^74]: J. Shapiro, 1993. (does not appear to be personal communication.
    There is an Eric Shapiro, a writer. Perhaps, this refers to an
    article he wrote about Ed Knight? He has written several according
    to the internet) **\[\[personal communication? More info
    needed.\]\]**

[^75]: B. Filson, May 13, 2006, personal communication.

[^76]: E. Hoffman, April 27, 2006, personal communication.

[^77]: O. Cohen, April 12, 2007, personal communication.

[^78]: L. Kimball, May 8, 2006, personal communication.

[^79]: Ibid.

[^80]: Ibid.

[^81]: Ibid.

[^82]: E. Knight, May 11, 2006, personal communication.

[^83]: Assertive Community Treatment Association, 2006,
    <http://www.actassociation.org/actModel/>.

[^84]: D. Dennis, and J. Monahan, eds., *Coercion and Aggressive
    Community Treatment: A New Frontier in Mental Health Law* (New York:
    Plenum Publishing, 1996).

[^85]: E. Knight, May 11, 2006, personal communication.

[^86]: Ibid.

[^87]: R. Anderson, May 21, 2006, personal communication.

[^88]: J. Agosta, "Pointers for Families and Individuals Who Want to
    Manage Their Own Services," in *Impact: Feature Issue on
    Consumer-Controlled Budgets and Persons with Disabilities,* eds. V.
    Gaylord, C. Moseley, C. Lakin, and A. Hewitt (Minneapolis):
    University of Minnesota, Institute on Community Integration, 2004).

[^89]: A. Young, May 10, 2006, personal communication.

[^90]: J. Agosta, 2004.

[^91]: Community Mental Health Services of Muskegon County, n.d.,
    <http://www.co.muskegon.mi.us/cmh/faq.htm>.

[^92]: Center for Self-Determination, n.d.,
    [www.self-determination.com](http://www.self-determination.com/).

[^93]: T. Nerney (2006). Fact Sheet: Mental health and self-direction: a
    shift\
    in power. Center for Self-determination. Retrieved February 4, 2008
    from
    [http://www.self-determination.com/articles/index.html]{.underline}

[^94]: National Rural Health Association, *Mental Health in Rural
    America,* 1999,
    <http://www.nrharural.org/advocacy/sub/issuepapers/ipaper14.html>.

[^95]: L. Corey, April 25, 2007, personal communication.

[^96]: D. DeVoe, April 25, 2007, personal communication.

[^97]: Anonymous, April 18, 2006, personal communication.

[^98]: C. Willging, "Medicaid Managed Care for Mental Health Services in
    a Rural State," *Journal of Health Care for the Poor and
    Underserved* 16, no. 3 (2005): 497--514.

[^99]: G. Grace and R. Christensen, "Unmasking Medical Illness in Mental
    Health Care," *Psychiatric Services* 57, no. 11 (2006): 1655.

[^100]: Board on Health Care Services, *Improving the Quality of Health
    Care for Mental and Substance-Use Conditions: Quality Chasm Series*
    (Institute of Medicine of the National Academies), 2006,
    <http://books.nap.edu/openbook.php?isbn=0309100445>.

[^101]: National Council on Disability, *National Council on Disability
    Applauds Presidential Mental Health Report* (news release, NCD
    #03-421), July 11, 2003,
    http://www.ncd.gov/newsroom/news/2003/r03-421.htm.

[^102]: National Council on Disability, *The Well-Being of a Nation: An
    Inter-Generational Vision of Effective Mental Health Services and
    Supports*, 2002,
    http://www.ncd.gov/newsroom/publications/2002/pdf/mentalhealth.pdf.