Voices and Visions:

Building Leadership for the 21^st^ Century

1996 Report to the President

U.S. Department of Health and Human Services Administration for Children
and Families

President\'s Committee on Mental Retardation

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Voices and Visions:

Building Leadership for the 21st Century

1996 Report to the President

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height="1.0902777777777777in"}

PRESIDENT\'S COMMITTEE ON MENTAL RETARDATION

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Administration for Children and Families

Washington, D.C. 20201-0000

**August 1, 1997**

**The President**

**The White House**

**Washington, D.C. 20500**

**Dear Mr. President:**

**On behalf of the President\'s Committee on Mental Retardation (PCMR)
and future leaders in the field of mental retardation, I am proud to
offer you the Committee\'s 1996 Report to the President, [Voices and
Visions\' Building Leadership for the 21st Century]{.underline}.**

**As the Committee looked to the 21st century, we recognized an
obligation to identify and to support the next generation of leaders in
the field of mental retardation. The Committee convened the Next
Generation Leadership Symposium in Washington, D.C. on September 27,
1996. Over 250 young leaders representing 40 States, the District of
Columbia and Guam gathered to identify the challenges, opportunities and
their leadership roles at this unique event.**

**This Next Generation Leadership Symposium was the centerpiece of the
Committee\'s celebration of 30 years of advocacy and leadership. As
these energized young Symposium participants charted territory for the
new millennium, PCMR also reflected on a proud and impressive past. The
Elizabeth Monroe Boggs Leadership Award was initiated to recognize the
life work of this remarkable scholar, researcher, advocate and parent of
a child with mental retardation. Three young leaders were honored at the
Symposium for their impact in the field of mental retardation in the**
name of Dr. Boggs.

**As PCMR continues it\'s mission for lifelong community inclusion for
people with mental retardation, we ask that all stakeholders join with
the self advocates, family members, service providers, professionals and
advocates who comprise the PCMR as we look with hope, energy and
creativity to the next generation of leaders.**

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**Acknowledgments**

The President\'s Committee on Mental Retardation (PCMR) is pleased to
present its 1996 Report to the President: Voices and Visions: Building
Leadership for the 21st Century. This report is the result of the
Committee\'s commitment to building a strong foundation for the future
leaders in the field of mental retardation.

The outcomes articulated in this Report to the President reaffirms the
mission of PCMR and strengthens the resolve for continued advocacy and
leadership into the next millenium. Continuing with the Committee\'s
theme of diversity and collaboration, over 250 young leaders from across
the nation were represented at this first ever event. Through active
interchange they shared perspectives from their roles as direct support
workers, self-advocates, family members, professionals, service
providers and researchers. PCMR would like to extend the Committee\'s
appreciation to this next generation of leaders.

A special thanks to Marci Whiteman who developed and supported
self­advocates as active participants in all aspects of the PCMR mission
including work as PCMR Committee members and presenters and attendees at
the Academy and Next Generation conferences.

PCMR wants to extend its deep appreciation to Tecla Jaskulski, whose
incredible talents express the mission of PCMR through her creative
writing and depth of understanding of the meaning of inclusion,
independence and personal empowerment for people with mental
retardation.

The Committee would also like to express its appreciation to Olivia A.
Golden, Principal Deputy Assistant Secretary for the Administration for
Children and Families (ACF), for her leadership and commitment to the
Committee\'s initiatives.

Gary H. Blumenthal

Executive Director

**Elizabeth Monroe Boggs, Ph.D., 1913 -1996**

This report is dedicated to Elizabeth Monroe Boggs, an outstanding human
being and a major influence in the mental retardation field throughout
her adult life. In 1939 Elizabeth Boggs was one of the first women to
receive a Ph.D. from Cambridge University in England. Dr. Boggs was
working as a theoretical chemist in 1945 when, during the first few
weeks of his life, her son David developed severe, lifelong
disabilities. She was 32 at the time. She immediately put her science
training to work in seeking services and supports. Finding none, Dr.
Boggs joined with other parents, in New Jersey and nationally. She
became a founder of what was then the Association for Retarded Children
of New Jersey (now The Arc) and served as the first woman president for
the National Association for Retarded Children which is now The Arc of
the United States.

When David was seven, his severe sleep disturbances meant that no one in
the household could get any rest. Elizabeth and her husband made the
painful decision to move him to a residential placement. At that time,
the concept of family supports was unknown.

Elizabeth was dedicated to improving the lives of people with mental
retardation and other disabilities. As a scientist she often was a
bridge between parents and the professional community at a time when
Federal expertise and commitment were minimal. As Federal interest grew
during the Kennedy administration, she was appointed to the President\'s
Panel on Mental Retardation and later to the President\'s Committee on
Mental Retardation.

Dr. Boggs played a major role in articulating the rights of individuals
with mental retardation. A fact-finding mission to the Netherlands in
the early 1960s stimulated action throughout the field and she was the
principal author of the 1971 United Nations Declaration of the Rights of
People with Mental Retardation. More recently, her leadership with
Justin Dart documented the need for the Americans with Disabilities Act.

Elizabeth Monroe Boggs was one of the architects of the concept of
developmental disabilities as early onset disabilities, and of the
Developmental Disabilities Assistance and Bill of Rights Act. She
conducted research and provided guidance to the Social Security
Administration on the Supplemental Security Income program. Her ability
to draw on a broader social welfare context for work in this field, her
intellect and her heart, made her truly a Renaissance woman and a
treasure of our field.

REPORT TO THE PRESIDENT

Voices and Visions:

Building Leadership for the 21st Century

*The President\'s Committee on Mental Retardation*

**INTRODUCTION**

The mission of the President\'s Committee on Mental Retardation (PCMR)
is to act in an advisory capacity to the President and to the Secretary
of Health and Human Services on matters relating to policy and programs
affecting services and supports for people with.mental retardation.
Approximately one in ten families are directly affected by a person with
mental retardation at some point in their lifetime. Many more are
involved as neighbors, classmates, co-workers and friends. Despite many
advances in the field, mental retardation continues to present a major
challenge to the social, educational, health and economic systems within
the United States.

The President\'s Committee on Mental Retardation was formally
established in 1966 to focus on this critical subject of national
concern. Since 1974, the Committee has organized national planning,
stimulated the development of plans, policies and programs, and advanced
the concept of community inclusion and participation for individuals
with mental retardation.

To continue to best fulfill its purpose, the Committee has adopted
several national goals. These goals recognize and uphold the right of
all people with mental retardation to create for themselves a life that
reflects independence, self-determination, and participation as
productive members of society. They include the assurance of full
citizenship rights of people with mental retardation, the provision of
all necessary supports to individuals and families, the reduction of the
occurrence and severity of mental retardation, and the promotion of the
widest possible dissemination of information on policies, programs and
service models that foster independence, self-determination and social
and economic participation.

The mid-1990s have been a time of renewed activity and commitment for
the Committee. For the first time in the Committee\'s history, President
Clinton appointed two leaders in the self-advocacy movement, people who
themselves have mental retardation. These individuals are participating
actively with the other 19 citizen members and nine public members to
address these goals. The Committee is justifiably proud of its recent
accomplishments, as well as its major contributions over the past 30
years.

Looking ahead to the 21st century, the Committee recognized an
obligation to identify the next generation of leaders in mental
retardation, and to begin actively supporting them in their efforts. The
Committee therefore convened the Next Generation Leadership Symposium on
September 27, 1996, bringing together future leaders from a wide range
of service and advocacy communities. Their recommendations form the
heart of this report.

**I. Overview: 30 Years of Leaders in the Field of Mental Retardation**

*The mental retardation activities of Federal, State and local
government agencies and foundations and other private agencies are
expanding rapidly and require careful review in order that maximum
benefits may be achieved. There is a continuing need to mobilize the
support of the general public and of specialized professional groups for
mental retardation activities. Re-evaluation of existing programs to
determine their adequacy and consideration of proposals for new mental
retardation activities is necessary.*

Executive Order 11280 Establishing The President\'s Committee on Mental
Retardation, May 11, 1966.

The year 1996 marked the 30th year since the President\'s Committee on
Mental Retardation was formally established with Executive Order 11280
by President Lyndon B. Johnson. Throughout the last 30 years the
Committee has taken a leadership role in promoting cutting edge reforms
in advocating on behalf of people with mental retardation and related
disabilities and their families.

**THE 1960s**

Before the President\'s Committee on Mental Retardation was formed in
1966, its precursor, the Presidential Panel on Mental Retardation,
established by President John F. Kennedy in 1961, conducted an intensive
investigation on the status of programs for people with mental
retardation. The Panel published the seminal Report to the President: A
Proposed Program for National Action to Combat Mental Retardation.

Following President Johnson\'s formal establishment of the Committee in
1966, members at the first meeting identified a focus on prevention,
early intervention, human and legal rights, and public awareness. The
Committee conducted public forums across the nation as well as a review
of the Federal programs and agencies that were resources for people with
mental retardation, and worked with the National Advertising Council and
private organizations on an extensive public education campaign.

One of the Committee\'s first publications was Changing Patterns in
Residential Services for the Mentally Retarded. This publication was
identified as an historic attempt to document the move toward
normalization in services to people with mental retardation. The
Committee\'s introduction of the normalization principle to the American
professional community, its publication of Wolf Wolfensberger\'s classic
essay \"The Origin and Nature of Our Institutional Models\" and other
contents, made this an extremely influential publication in the advent
of community service development in the United States.

A major milestone took place in 1969 when the Committee\'s conference on
the education problems of children in inner cities resulted in the
landmark publication of the booklet The Six-Hour Retarded Child, calling
for expansion of special education for children in the public education
system.

**THE 1970s**

The Committee addressed a wide range of issues affecting people with
mental retardation during the 1970s, including the significant
publication in 1972 of Transportation and the Mentally Retarded - a
critical issue which remains intractable now, 24 years later. A series
of key publications analyzed and defined needed actions, in particular
two in 1976: Report to the President: Century of Decision, and Mental
Retardation: The Known and the Unknown.

Legal rights were a major focus throughout the 1970s, including
conferences and publications such as The Mentally Retarded Citizen and
the Law, The Retarded Offender, and Silent Minority. Support of the self­
advocacy initiative began through the People First movement. The
Committee also presented descriptions of effective programs in community
services, education, and employment. In 1976 the Committee published a
second edition of *Changing Patterns in Residential Services*, and in
1978 issued Mental Retardation: *The Leading Edge - Service Programs
That Work*. The Committee extended its survey of \"programs that work\"
to prevention, reconfirming its high priority on effective prevention
strategies, holding an international conference on prevention, and
publishing *Prevention Strategies* That Work as the 1979 Report to the
President.

**THE 1980s**

The Committee established a new subcommittee on Systems Simplification
to review Federal and State laws, regulations and procedures; identify
gaps, overlaps and barriers; and develop policy recommendations for more
effective and efficient service delivery. Full citizenship for people
with mental retardation was a focus of Committee activity, including
employment opportunities and supports, and publication of From Rights to
Realities: *Advocacy By and For Retarded People in the 1980s*.

The priority on prevention was reinforced through multiple forums,
publications and dissemination of a *Model Guide for State Planning for
the Prevention of Mental Retardation and Related Disabilities*. The
Committee also continued a major role in international activities,
including the United Nations International Decade of the Disabled and
liaisons with the Organization of American States, the United States
Information Agency, and the Pan American Health Organization.

**THE 1990s**

During the 1990s the Committee has been revitalized under new
leadership, both members and executive staff. Most significantly,
President Clinton appointed two self-advocates as Committee members. The
Committee also has expanded its support of self-advocates, nationwide.
Other milestones include:

-   The April 1994 conference and resulting publication, The National
    Reform Agenda and People with Mental Retardation: Putting People
    First.

-   The National Collaborative Academy Initiative, bringing diverse
    teams of key stakeholders together to plan action steps to improve
    the lives of people with mental retardation and to facilitate their
    full inclusion in their respective States and communities.

-   Major resource publications on community inclusion and on the issues
    and concerns surrounding the direct support workforce.

-   Policy advisories on the Children\'s Supplemental Security Income
    program and Medicaid because of their critical role in maintaining
    the safety net for people with mental retardation.

-   The Next Generation Leadership Symposium and the Elizabeth Monroe
    Boggs Leadership Award, initiated in 1996.

Committee activities have consistently brought together renowned leaders
in the field of mental retardation, as well as providing
state-of-the-art information to family members, professionals, and,
increasingly, to self-advocates, and the general public.

The past year has been one of the most productive in the Committee\'s
history. In addition to its continued advocacy through Policy Statements
on Medicaid and Welfare Reform, the Committee has also maintained
collaboration with other Federal agencies, including the Administration
on Developmental Disabilities, the Office of Special Education and
Rehabilitative Services, the National Institute on Disability and
Rehabilitation Research, the National Institute on Child Health and
Human Development, and the Social Security Administration. Also as
Committee members and as resources drawn from beyond the Committee,
self-advocates have played significant roles in Committee activities,
including participation in the two major events: the National
Collaborative Academy on Mental Retardation and the Next Generation
Leadership Symposium.

The Committee recognized the key role of frontline workers in successful
community inclusion for people with mental retardation. The critical
need to

empower and enhance direct support workers was a Committee focus during
1996, stimulated considerably by Committee member John F. Kennedy, Jr.,
founder of Reaching Up, Inc.. The Committee produced Opportunities for
Excellence: Supporting the Frontline Workforce, a major resource
publication for State and agency policymakers, developed and published
in collaboration with Reaching Up. The year 1996 also saw the formation
of the National Alliance for Direct Support Professionals, with active
PCMR participation.

The Committee pressed the National Collaborative Academy initiative
forward on two fronts during 1996. State Teams from the first Academy,
held in 1995, reported considerable progress on the action plans they
had developed. For example, Louisiana continued its momentum with
consensus building activities and expansion of the Team to the regional
level. The highlight was a state of replica of the National
Collaborative Academy in June 1996, with nearly 300 attending.
Participants explored the issue surrounding systems change for
person-centered supports and formed recommendations for change during
plenary sessions, concurrent workshops, and intensive Regional Team

meetings.

Recognizing the strength of diversity in participation, the 1996
National Collaborative Academy on Mental Retardation continued the
successful approach of bringing together a wide range of individuals on
each Team. The nine Teams were representative of the collaboration that
must occur between advocates, family members, legislators, budget
officials, Governors, mayors, educators and the business community, as
well as traditional supporters of services for people with mental
retardation. Delegations from Massachusetts, Mississippi, the Navajo
Nation, Nebraska, Oregon, Pennsylvania, Washington D.C., Wisconsin and
Wyoming worked September 28-30, 1996 as partners in developing
Collaborative Action Plans to increase opportunities for lifespan
inclusion of citizens with mental retardation in everyday life.

Along with the Committee\'s support of self­advocacy and enhancement of
the direct support workforce, the National Collaborative Academies
reflect its commitment to preparation for the 21 st century. The planned
continuation of the Academies over the next few years is intended to
reach all States by 2001.

The Committee\'s primary initiative in preparing for the next century,
however, is to turn to a new generation of leaders who support the
national goals of PCMR. As outlined in the Committee\'s new Executive
Order, these goals are as follows:

-   To promote full participation of people with mental retardation in
    the

> communities.

-   To provide all necessary supports to people with mental retardation
    and their families for such participation.

-   To reduce the occurrence and severity of mental retardation by
    one-half by the year 2010.

-   To assure the full citizenship rights of all people with mental
    retardation, including those rights secured by such landmark
    statutes as the Americans with Disabilities Act of 1990, Public Law
    101-336 (42 U.S.C. 12101 et seq.)

-   To recognize the right of all people with mental retardation to
    self-determination and autonomy, to be treated in a
    nondiscriminatory manner, and to exercise meaningful choice, with
    whatever supports are necessary to effectuate these rights.

-   To recognize the right of all people with mental retardation to
    enjoy a quality of life that promotes independence,
    self­determination, and participation as productive members of
    society.

-   To promote the widest possible dissemination of information on
    models, programs, and services in the field of mental retardation.

*Executive Order 12994 of March 21, 1996, Continuing the President\'s
Committee on Mental Retardation and Broadening Its Membership and
Responsibilities*

The young leaders of the Next Generation Leadership Symposium
consistently reflected these national goals.

II. **The Next Generation**

It was an honor to be with so many other direct support workers and
network with them about common concerns.

Sally Jochum, Community Living Coordinator (Kansas)

It was very exciting to be part of the first Next Generation Leadership
Symposium, and very empowering to me and the other young people.

Yona Lunsky, Researcher, The Nisonger Center and Family Member (Ohio)

Bringing together the next generation of leaders in the field of mental
retardation was the centerpiece of the Committee\'s celebration of 30
years of advocacy and leadership. Future leaders - with an emphasis on
those under the age of 35 - were invited to the Committee\'s Next
Generation Leadership Symposium at the American University, Washington
College of Law, in Washington, DC, on September 27, 1996. More than 250
individuals from over 40 States, the District of Columbia and Guam,
responded, including self-advocates, family members, direct support
workers and other service providers, public policy advocates, students,
AmeriCorps participants, Federal, State and local agency staff, and
researchers.

The diversity of the future leaders reflects the democratization of the
mental retardation field over the past 30 years, as well as the strong
and emerging collaboration between people with disabilities and their
families and those who provide services. They came to the Symposium
seeking information, opportunities to meet and learn from other young
leaders, and an opportunity to make recommendations to the Committee for
inclusion in this Annual Report to the President.

**The Human Rights Foundation**

-Everyone has the right to life, liberty and civility of person.

-No one shall be held in slavery.

-No one should be subject to torture or to cruel, inhumane or degrading
treatment or punishment.

-Everyone has the right to recognition everywhere as a person before the
law.

-All are equal before the law and are entitled without any
discrimination, to equal protection of the law.

The Universal Declaration of Human Rights adopted by the United Nations
in 1948.

**SUPPORTING YOUNG LEADERS**

Self-advocates, family members, direct support workers, and researchers
helped the Committee to identify what is needed to support the Next
Generation of Leaders:

-   Personal courage, to face up to social mistrust and
    misunderstanding.

-   A dream and a vision upon which a career can be developed.

-   Friendships and the support they provide.

-   Empowerment of direct support workers and collaboration with
    individuals with disabilities and their families.

-   Embrace new ideas coming into the field, and assist young persons to
    put forward fresh ideas, as new leadership takes the movement
    forward and carries us into the future.

Leadership in the field of mental retardation comes from people in many
different roles: people with disabilities, family members, teachers,
lawyers, service providers, administrators, professional advocates,
professors and politicians. What these people share is an ability to see
what others see, but to see it in a new way. Current and future leaders
share a commitment to really knowing and caring about people\'s hopes,
dreams and desires, and to being part of seeing them reflected in
people\'s lives. Behind all of their different roles and approaches,
current and emerging leaders share unusual levels of commitment to
people, a sense of their own mission, energy, creativity and the ability
to work with and for others.

The Committee will continue its support of emerging leaders through
continuation of the Next Generation Leadership Symposium, networking
with young leaders participating in the initial Symposium, and providing
ongoing support to members of the direct support workforce and
self-advocates.

**THE ELIZABETH MONROE BOGGS AWARD**

A highlight of the Next Generation Leadership Symposium was the
presentation of the Elizabeth Monroe Boggs Award for Leadership in the
field of mental retardation. The Committee chose this in honor of Dr.
Boggs\' inestimable contributions to the field and to the Committee, and
in loving memory of her mentorship of current and emerging leaders. Dr.
Boggs cut across all the areas encompassed by the Next Generation of
Leaders: public policy, advocacy, service provision, and as a parent -
the role closest to her heart. In doing so she developed and promoted a
deep love and respect for direct support workers and they for her.
Consistent with one of the Committee\'s goals for the Symposium, Dr.
Boggs also loved to connect people working in one area or field to
another, promoting good work around the nation and around the world.

Three young leaders who received the Elizabeth Monroe Boggs Award for
Leadership were culled from nominations submitted to the Committee from
around the country:

-   **Kerri Melda**, a resident of Portland, Oregon, is a Research
    Associate with the Human Services Research Institute, located in
    Salem, Oregon, provides leadership in the areas of family support,
    applied research, and inclusion. Kerri\'s activities have had a
    positive impact on enhancing self determination for citizens with
    mental retardation in Oregon.

-   **Tia Nelis**, Naperville, Illinois, is a self-advocate employed by
    the University of Illinois at Chicago/University Affiliated Program
    and a leader in the self-advocacy movement. Tia is the Chair and one
    of the founders of Self Advocates Becoming Empowered, a national
    organization devoted to strengthening the role of self-advocates,
    finding alternative living arrangements for people with mental
    retardation, and seeking the closure of institutions. She has held
    leadership positions with the Illinois Developmental Disabilities
    Planning Council and People First of Naperville.

-   **Lesa Nitcy Hope**, Atlanta, Georgia, is a professional working
    with the Atlanta Alliance on Developmental Disabilities. Lesa has
    made numerous contributions to improving the lives of people with
    mental retardation, including: providing respite for people with
    disabilities in her home; training people with disabilities and
    their family members throughout the State of Georgia in
    person-centered planning techniques as part of personal futures
    planning; working with agencies to develop strategic plans that move
    services to a more person-centered and support orientation; and
    conducting values training around the State on the principles of
    participation and inclusion.

The Committee anticipates that the Elizabeth Monroe Boggs Leadership
Award will be an annual program, recognizing the hope and talent of
people of all ages.

**CHALLENGES TO BE ADDRESSED**

The Committee and the Next Generation Symposium participants reviewed
nine challenges that are part of the recent past and the current world,
affecting individuals with mental retardation from infancy through their
lifespan:

-   The continuing phase-down of State residential facilities and the
    related uncertainties among many family members that often accompany
    that process.

-   Reducing waiting lists, which in particular are affecting young
    people waiting for services following their education and aging
    families who are the primary caregivers.

-   Making inclusion work in the school, the workplace and community.

-   Maintaining vigilance in managed care policies and
    implementation**.**

-   Extending employment opportunities.

-   Expanding opportunities for people to have homes of their own.

-   Supporting direct care professionals through enhanced compensation,
    training, career opportunities and status.

-   Enforcing equity and fairness in the area of criminal justice -
    currently an oxymoron as it relates to people with mental
    retardation.

-   Realizing the benefits and potential of assistive technology.

These prominent concerns, along with the public policy issues and
thoughts on leadership, were considered throughout the Symposium as
young leaders met in small groups and developed recommendations in seven
areas: Public Policy, Community Development, Education and Early
Intervention, Self-Determination and Community Inclusion, Health and
Wellness, Civil Rights and Cultural Diversity, and Research and
Development.

**III. Public Policy: Changes, Choices and Challenges**

*I intend to spend the next four years doing everything 1 can to help
communities to help themselves; to educate all Americans about what is
working and to create, in the process, a national community of purpose.
It will require us, however, to believe that our fellow Americans are
capable of doing this. This morning 1 met (Ann Forts,\] a young woman
from New Hampshire with Down syndrome - one of two people with mental
retardation 1 appointed to the President\'s Committee on Mental
Retardation - who gave me a letter, a resume, and a button. It said
\"Down Syndrome, \" only the \"Down\" was crossed out and replaced with
\"Up.\" Does that person have limits on what she can achieve? Sure,
there are some. So do I. So do you. But if you spend all your time
thinking about it, you won\'t think about what will be up instead of
down. You must believe in the potential of the American people. We
cannot afford to patronize each other with cynicism.*

Excerpted from President Clinton\'s remarks to the Democratic Leadership
Council, Decem*ber 11, 1996.*

The Next Generation Leadership Symposium\'s keynote speech by
Representative Patrick Kennedy focused on public policy issues. He
identified a wide range of challenges faced by those concerned about
people with mental retardation during the past Congressional session, in
particular protecting safety nets for our most vulnerable citizens in
the face of pressures to balance the Federal budget and to devolve
responsibilities to the States. Representative Kennedy also described
his great pride in what his family has done in the area of mental
retardation. He urged all participants to recognize the importance of
their work and to make their voices heard on Medicaid, on maintaining
essential entitlements, and on the assumption of responsibilities at the
State level that appropriately address the needs of people with mental
retardation and their families.

Kathleen McGinley, Ph.D., The Arc-US Governmental Affairs Office, shared
the Committee\'s concern that changes are being made for expediency and
flexibility, but not necessarily in the interests of individuals:

-   Choices need to be made based on people\'s needs and desires, with
    meaningful options available.

-   We need challenges that can be addressed, and to create
    opportunities - not focus on barriers.

Laurie Rubiner, Legislative Assistant to Senator John Chafee, warned
Next Generation Leaders that efforts are likely to continue to convert
Medicaid into a block grant, with potential risks to people with mental
retardation and related disabilities.

Our role as advocates is to become involved at every level, to stay
informed, to work to shape public policy, to identify needs and
communicate them, and to work to change the balance of power so that the
disability community is better represented. To work against stigma and
discrimination, we need to tell our stories effectively, to shape public
opinion, and to use the media effectively.

Across all areas of public policy, we must think in the long term - to
send the message of the long term benefits of access to health care, to
a free appropriate public education, to affordable housing in the
community, to effective transition services from school to real jobs in
the community, to dependable transportation, and to the essential safety
net programs. We need to say that the long term fiscal and human costs
are going to be too high if supports are removed in the name of short
term budget cuts.

**THE LINK BETWEEN POVERTY AND MENTAL RETARDATION**

The critical need to preserve the safety net is underscored by an
understanding of the association between poverty and mental retardation.
There is no denying the substantial association between mental
retardation, as defined by measured intelligence, and socio-economic
status. Data from the National Health Interview Survey show that risks
for mental retardation and related disabilities, learning impairments,
and emotional disorders are related to family income.

Although there are some dissenters, the current dominant view is that
low socio-economic status creates conditions that predispose some
children to mental retardation. Impoverished women are less likely to be
healthy before conception and are less apt to receive adequate prenatal
care during pregnancy.

Children born into and raised in relatively disadvantaged circumstances
often are deprived of essential educational, health and social support
systems. Many are also exposed to environmental threats to normal
development such as poor family structure, infectious diseases,
inadequate nutrition, lead poisoning and many other difficulties,
usually in combination. These factors are associated with severe levels
of mental retardation as well as more mild levels, and with numerous
other physical and behavioral disabilities. Fetal alcohol syndrome, the
leading known cause of mental retardation, while present everywhere in
American society, is ten times more prevalent in areas of urban poverty
than elsewhere.

Especially when occurring in combination with minority status, poverty
also is associated with reduced access to services and supports.
Participation is compromised by lack of transportation, lack of
resources for school supplies and supports used in the home, lack of
information on what is available, and unmet health and mental health
needs.

**PUBLIC POLICY RECOMMENDATIONS**

-   Legislation should be passed providing universal health care.

-   The Federal budget should be restructured to provide a more
    equitable distribution of dollars across the board, not just in the
    pool of resources that is directed toward disability issues.

-   Resources for services and supports should be redistributed to put
    funds or their control directly in the hands of consumers and
    families, in ways that create a competitive marketplace among
    providers, both specialized and generic.

-   Authorization for the Medicaid program should be changed to permit
    vouchers. This change would allow Medicaid funds to be used in ways
    that more specifically meet the needs of the consumers and families
    the program is intended to help.

-   Federal and State Medicaid program reforms should recognize
    commitments previously made to groups of needy individuals. There
    should be assurances that current allocations remain dedicated to
    those who depend on these resources rather than going into State
    general funds. States should have guidelines and regulations on how
    Medicaid dollars are spent.

-   The impact of managed care on people with disabilities should be
    scrutinized, including the full range of health and economic
    ramifications. Safeguards and quality indicators should be
    developed, tested and implemented.

-   Appropriate technical and financial support should be coupled with a
    legislative mandate to close all segregated settings, including
    institutions. States should be required to develop comprehensive
    plans for closing segregated settings, with input from all affected
    stakeholders. Funds currently supporting these settings should be
    reallocated to other services chosen by consumers.

-   There should be prohibitions against segregated schooling for people
    with disabilities; existing mandates for education in the least
    restrictive environment should be monitored and scrupulously
    enforced.

-   People with disabilities, parents and families should have a voice
    in how policies are shaped and molded for the future, with
    opportunities for active participation as members of decision ­making
    bodies and advisory groups.

-   Consumers and parents should be educated about public policy issues,
    and should be allowed to lead and direct the disability movement
    into the next century.

**IV. Community Development: Opening Doors For Housing and Employment**

*Please tell President Clinton that I would like to see more State
institutions closed. We can help States do this, to get people into
homes of their own, doing things in the community and not being stuck on
an institutional campus. We also can encourage businesses to hire people
with disabilities.*

*Kevin Parker, Self-Advocate (Oklahoma)*

**HOUSING**

Success of individuals and advocates in housing-­related decisions at the
local and State levels is one of the most critical components to success
both now and in the future. Without the informed involvement of people
with disabilities and their advocates as communities develop their
future housing strategies, the needs of people with disabilities will
continue to be unmet. Because Federal housing policy is affected by
Federal, State and local laws, there is an equally critical need for
people to be active and informed participants in the legislative process
at every level.

Even when the housing needs of people with disabilities have been
accurately estimated - rarely reflected in the Consolidated Plans
mandated by the Department of Housing and Urban Development - the
affordable housing delivery system has been resistant to expanding
housing opportunities for people with disabilities. Among the many
reasons for this lack of response are a lack of information and
understanding of disability issues, stigma, and housing discrimination
that continues to occur within the affordable housing system. If people
with mental retardation and related disabilities are to have the
opportunity to participate and contribute to society - the major premise
of the Americans with Disabilities Act - then they must have access to
decent, safe and affordable housing in the nation\'s communities and
neighborhoods. We must begin to open the doors!

Despite the crisis in affordable housing, there are several positive
trends in where people with mental retardation are living:

-   The number of children with mental retardation and related
    disabilities in public institutions continues to decline, thanks to
    the right to a free and appropriate public education under the
    Individuals with Disabilities Education Act and increased access to
    family supports. Today about 3,000 children and youth (21 years and
    younger) live in public institutions, compared with 54,000 in 1977
    and 91,000 in 1965.

-   The typical size of residential service arrangements is at an all
    time low, with most States - 29 in all - serving the majority of
    individuals in settings of six or fewer people.

-   Large public institutions continue to be closed in favor of
    community living arrangements. Nearly 40 percent of the State
    institutions designated for people with mental retardation and
    related disabilities that were operating in 1960 have been closed.
    By 1996, three States and the District of Columbia had closed all
    State institutions, and four additional States projected total State
    institution closure by the end of 1998.

-   States are increasingly using more flexible approaches to
    residential services, including supported living programs and
    replacing community-based Intermediate Care Facilities for persons
    with Mental Retardation (ICF/MR) with services and supports funded
    through the Medicaid Home and Community Based Services waiver. In
    June 1996 there were over 190,000 people receiving services through
    the waiver program, more than three times the 62,000 participants in
    June 1992. Over the same period participation in the more costly and
    institutionally-oriented ICF/MR program decreased by about 20,000.

-   The National Home of Your Own Alliance, the Fannie Mae \"Home
    Choice\" underwriting experiment, and related State programs have
    stimulated widespread innovations in making home ownership and
    control over living arrangements a reality for many people with
    disabilities. Over 42,000 people with mental retardation and related
    disabilities receive residential support in homes that they
    themselves own or rent.

Major barriers remain, however, for many individuals with mental
retardation and their families. Despite a steady increase in the total
number of people receiving publicly-funded community living support and
in the development of community living arrangements, waiting lists have
grown larger in many States. A recent study found that States would have
to collectively increase their overall residential capacity by 18
percent just to meet current demands, an unlikely scenario in the
climate of constraints on public dollars and flatter State agency
budgets. Waiting lists in many States number in the thousands, comprised
in particular of people in institutions waiting to move to the community
and people with mental retardation who are living at home with aging
parents. For example, in Maryland alone, 13 percent of the 5,000 people
on the waiting list are in the care of parents aged 80 and older.

There are also wide variations among the States in the extent to which
they have moved toward smaller community living arrangements. Although
the national average size of residential settings (including
institutions still in use) is 3.9 individuals, the range is from 1.3 in
Vermont to 18.7 in Virginia. States also vary greatly in the extent to
which they have embraced more flexible funding arrangements, in
particular under the Medicaid Home and Community-Based Services waiver,
and have moved away from the more restrictive facility-oriented ICF/MR
program.

EMPLOYMENT

People with disabilities represent an employment resource that has been
largely overlooked. As employees they repeatedly get high marks from
managers on job-related issues. A U.S. Census study found that 20
million of the more than 29 million working age adults with disabilities
in the United States are unemployed; nearly 80 percent of them would
like to work but do not.

Since the passage of the Americans with Disabilities Act in 1990,
businesses must provide equal opportunity and reasonable accommodations
to people with disabilities. The average job accommodation costs
employers \$50 or less. Employers prepared to work effectively with
workers with disabilities will not only be better able to meet the
letter and spirit of this law, but will have a competitive advantage in
recruiting and retaining the most qualified workforce possible. There is
also evidence that the Americans with Disabilities Act is contributing
to increased employment ratios among individuals with severe
disabilities.

Supported and competitive employment opportunities continue to expand
for people with mental retardation, with more and more individuals
working in integrated settings and receiving higher wages than possible
in segregated sheltered employment. The total number of individuals with
disabilities in supported employment grew from 10,000 in 1987 to
approximately 140,000 in 1995. In addition, people with disabilities can
increase their annual earnings by up to 500 percent through supported
employment, with people with severe mental retardation among those most
likely to see significant gains in earnings. There is also evidence that
supported employment is cost-effective, costing significantly less than
other day support options for people with significant disabilities, such
as sheltered workshops or activity centers.

Innovations like Bridges\...From School to Work, established by the
Marriott Foundation for People with Disabilities, are fostering the
employment of young people with disabilities. The program focuses on the
transition from school to employment through paid internships for
students with disabilities in their final year of high school. Managers
and supervisors receive disability awareness training, while the school
system supports students and their families throughout the internship
process as well as maintaining regular contact with the program\'s
employer representatives. Other emerging approaches of interest include
natural workplace supports, consumer-directed supported employment
models, employer-directed support activities, business and corporate
initiatives, broader applications of assistive technology, and other
workplace accommodations.

Despite these gains and innovations, however, much remains to be done to
ensure that adults with mental retardation have opportunities for
community employment, fair wages and benefits, and productive activities
of their choice. The allocation of State and Federal resources is still
heavily skewed toward sheltered employment. People with severe
disabilities continue to be under-represented in supported employment.
Although thousands of individuals with severe mental retardation are
working successfully in competitive employment, negative attitudes and
low expectations among both professionals and employers continue to
restrict job opportunities. Low wages and part-time employment reduce
opportunities for self-sufficiency, along with limiting access to health
insurance and fringe benefits.

There are also many barriers to work for people receiving Supplemental
Security Income and Social Security Disability Insurance benefits. Even
modest employment income can cause people with disabilities to lose
their monthly Social Security disability payments, and often, more
importantly, to lose the associated health insurance benefits through
the Medicaid and Medicare programs. This is an understandably
frightening prospect for people with disabilities and their families,
especially when many of the jobs that are available do not provide
health coverage. Surveys have indicated that loss of health coverage is
even more of a concern than the potential reduction of cash assistance
for many people.

In addition, the prohibition of Medicaid financing of vocational
supports (with limited but beneficial exceptions) continues to create
financial incentives for placing people with mental retardation in
non-productive \"habilitation\" settings. This problem was reflected in
a recently released evaluation of a five-year Medicaid Community
Supported Living Arrangements demonstration in eight States, which found
participants most frequently dissatisfied with their daytime activities,
primarily because of the exclusion of significant vocational
opportunity.

**COMMUNITY DEVELOPMENT RECOMMENDATIONS**

-   Community development should focus on developing partnerships for
    affordable housing, community employment, and providing supports for
    people with mental retardation. In developing these partnerships, we
    must take the time to get to know people as people, not just
    agencies.

-   Community members, including potential employers, need to be better
    educated about people with disabilities. The language used to
    describe people with disabilities should be modified to promote
    better understanding and acceptance, including focus on the
    contributions they can make when given the opportunity.

-   The Americans with Disabilities Act should be more strongly enforced
    concerning people with mental retardation; ADA is not limited to
    physical barrier issues.

-   People with disabilities need to be in control of where they live
    and to have choices in their living arrangements. To make this a
    reality, consumers, family members and service providers must
    receive improved training and support.

-   Waiting lists must be reduced.

-   People with disabilities should get their fair share of HUD Section
    8 resources and should be able to transfer their Section 8
    assistance to home ownership.

-   Tax incentives should be provided to employers who hire people with
    disabilities.

-   To promote employment success, employers and potential employers and
    co-workers should receive disabilities awareness training that will
    lead to natural supports.

-   Incentives should be established and disincentives removed so that
    people with disabilities have access to on-the-job training,
    internships for job sampling, and other supports to employment and
    career development.

-   Self ownership of businesses and entrepreneurship should be promoted
    for people with disabilities.

-   Employment and housing regulations should be flexible enough to
    allow for highly personalized support plans.

**V. Education and Early Intervention: Foundations For Success**

*I like going to school with my friends. I have great teachers.*

Beth Terrill, Student and Self-Advocate (Illinois)

Twenty years of Federal guarantees of a free and appropriate public
education under the Individuals with Disabilities Education Act (IDEA)
and its predecessors have been an outstanding success. During this time
20 million children with disabilities have received education intended
to meet their individual needs. The success of this law and its
commitment to providing equal access to education for students,
regardless of their disabilities, is reflected in higher portions of
students graduating from high school, entering college, and becoming
competitively employed. Only 33 percent of older people with
disabilities are employed, compared to 57 percent of youth who have
benefited from IDEA and who are employed within five years of leaving
school.

Although falling short of original goals in funding a portion of special
education costs, an increase in Federal appropriations will provide
States with nearly \$3.8 billion in assistance in FY 1997. In addition,
over \$250 million in Federal resources will provide essential support
for developing teacher training models, research on best practices to
improve educational outcomes for specific and diverse disabilities,
developing educational technology, and technical assistance to educate
parents about their rights and responsibilities.

Maintaining these successes, however, requires a renewed commitment in
the IDEA reauthorization to addressing the individual needs of each
student with disabilities, as identified in their Individual Education
Program, with effective supports and incentives for schools, teachers,
children and families. State and local education agencies and teaching
personnel need support in making inclusion work, especially for students
with mental retardation and with severe disabilities. Over five million
students with disabilities.rely on IDEA for educational opportunities,
from early intervention as infants and toddlers to young adults
transitioning to the world of work. Although improvements in IDEA can be
made during the reauthorization process, this is no time to pull back on
the nation\'s commitment to equal access to education.

**EDUCATION AND EARLY INTERVENTION RECOMMENDATIONS**

-   Resources for education and early intervention should be expanded.

-   Teachers should be trained to educate all students, including those
    with mental retardation and related disabilities and those from
    culturally diverse backgrounds.

-   Teachers and other professionals should be helped to overcome any
    tendency to prejudge the ability limits of people with mental
    retardation.

-   Student teaching should be done in inclusive classrooms.

-   Enhanced teacher training should lead to the creation of a unified
    educational system and the elimination of separate and parallel
    general education and special education systems.

-   Biases in tests and assessments related to disability and cultural
    diversity should be removed.

-   Parents should be educated and empowered so that they can be
    actively involved as advocates for their children.

-   Beginning with pre-school, education should encourage full inclusion
    in all areas of community life.

VI. **Self-Determination and Community Inclusion: Respecting Each Person
    as an Individual and as a Citizen**

*Everyone can get natural support if they are given a chance to be a
part of their community. It does not matter if they are a person with a
disability or a person without a disability.*

James Meadours, Self Advocate (Oklahoma)

Every generation of leaders is challenged to bring new ideas and
solutions to the forefront while helping make existing best practices
the usual way of doing business. Even more than leaders of recent years,
emerging leaders face another dimension: cost containment. Their
challenge is to discover ways to enhance the citizenship and
satisfaction in the lives of individuals with mental retardation and
related disabilities and to do so without increasing expenditures.

Although this is not a wholly new challenge, few can doubt that cost
containment will be a more visible aspect of efforts to enhance the
lives of people with mental retardation and their families in the
future. Leaders are needed who can:

-   Help discover better ways of assisting people to live the lives they
    want that do not depend just on more money.

-   Redesign and transform systems from supporting programs to
    supporting people.

-   Learn and teach others how to support increasing numbers of people,
    including tens of thousands who are waiting for services, with
    public resources that will grow much more slowly than will demand.

Achieving goals of having each person supported by, happy in and
contributing to their communities, will require leaders who can deal
creatively with a future that seems fraught with scarcity, complexity
and ambiguity.

For people with disabilities to get all they want out of life it is
important for them to have loving, caring relationships with other
people. Like everyone else, individuals with mental retardation enjoy
friendships, activities with people who know and care about them as
individuals, and having someone who can provide support when things
aren\'t going well, as well as celebrating each other\'s successes.
Public and private certification programs increasingly recognize
relationships as a significant aspect of the quality being provided to
individuals, especially in residential programs. Families in many States
are also receiving training and other supports to be involved actively
in maintaining their relationships with their relative with mental
retardation and related disabilities and to participate in
person-centered planning.

Although much progress has been made, loneliness and social isolation
are still the reality for too many individuals with mental retardation.
Many community members need support to become connected with people with
disabilities as neighbors, co-workers and friends sharing common
interests. Creative hard work is needed so that civic organizations,
churches, community recreation, social programs and other organizations
and their members can be recruited and supported in efforts to establish
and sustain relationships and natural supports. Next Generation Leaders
must give families, support staff and other partners the tools and
opportunities they need to make natural supports a reality.

Increased support for self-determination and self-advocacy is also
needed. There is increasing recognition that people with mental
retardation and related disabilities need the same kinds of people in
their lives that all of us need: people who will listen, not assume; who
will accept reasonable risk in pursuit of personal goals, not demand
perfect safety; who value challenge as fundamentally human, and total
protection from failure as debilitating; who will suggest, not dictate,
and who celebrate common human values regardless of differing abilities.

People have been helped to become physical citizens of our communities
and some have been helped to participate. The next challenge is to fully
honor people\'s citizenship by providing levels of freedom and control
over their lives that reflect the values of the society in which they
are citizens.

**SELF-DETERMINATION AND COMMUNITY INCLUSION RECOMMENDATIONS**

-   National, State and local commitments are needed to assure that
    residential, training and other settings that impede people\'s
    opportunities for self-determination and community inclusion will be
    replaced by settings that do not. Implementing these commitments
    will require a steady and reliable information flow about successful
    practices that move people from congregate care to homes, jobs and
    valued roles in their communities, and attention to the
    disincentives that continue to deprive people with mental
    retardation of opportunities.

-   Self-advocates must be assisted to help themselves, to help each
    other and to help those who support them to understand what they
    want and need. Government needs to do better at guaranteeing
    meaningful involvement of consumers in all aspects of individual
    services development, funding options, and service operations that
    affect people with mental retardation. \"Nothing about me, without
    me\" should be the prevailing principle.

-   The abilities and commitments of professionals, support staff and
    family members to listen, and to hear people with mental
    retardation, including those who cannot talk, must be improved. It
    is important to:

    -   Establish person-centered planning, conducted by skilled
        facilitators, as a preferred strategy when individual services
        are being planned.

    -   Train Federal, State and local quality assurance monitors about
        the nature, benefits and practices of person-centered planning.

    -   Continue to develop and assure people\'s access to alternative
        and augmentative communication tools that accommodate language
        impairments.

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-   Expanded funding, demonstration efforts, technical assistance and
    other supports for supported community living must be increased to
    enhance State and local agency capacity for services that help
    people live the lifestyles that they choose. To this end, the
    Federal Health Care Financing Administration should continue to
    facilitate State efforts to move Medicaid long term care funds from
    the ICF/MR program to Home and Community Based waiver services.
    Federal and State governments should establish mechanisms assuring
    that housing funds support purchases by and for consumers.

-   People\'s rights and natural tendencies to make changes in their
    lifestyles as their needs and interests change must be honored. This
    requires that funding systems be restructured to assure that
    resources allocated on behalf of people with mental retardation and
    related disabilities can go with them as they seek changes in their
    lives and careers, so that funding rigidity no longer traps people
    in unwanted places and programs.

-   Innovations designed to give people more control over their lives
    and resources must receive greater support, such as through funding
    models that give people more control over the financial resources
    allocated for their Medicaid long term supports. Such models should
    be evaluated and publicized and \"fast-track\" waivers should be
    extended to allow demonstrations of individually controlled budgets.
    Governments at all levels must become much more active in creating
    expectations and mechanisms that assure consumers a central role in
    resource utilization, choice of provider, and other aspects of
    consumer control.

-   Communities and their organizations (places of worship,
    neighborhoods, parks, etc.) must be challenged to accept their
    obligations for enhancing the community membership of people with
    mental retardation. Political and moral leaders must speak out about
    the community\'s responsibilities and opportunities, particularly as
    State and local organizations take on relatively greater
    responsibility for the well-being of people with disabilities.
    Better information must be generated about States and communities
    that are models for others in accepting these responsibilities,
    coupled with greater efforts to acclaim and support successful
    promotion of community membership.

-   Information sharing on how people with disabilities achieve more
    self-determined lifestyles should be improved and expanded through:

    -   Government-supported forums bringing together self-advocates,
        families and staff to share ideas, energies and mutual
        commitments.

    -   Support access to technology-based information opportunities to
        reach people in different locations.

    -   Development of print and electronic databases.

    -   Resources that allow widespread communication about innovations
        and experiences.

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-   Natural supports must receive greater attention, including:

    -   Recognition of the importance and benefits relative to costs
        when natural supports are developed and sustained.

    -   Government efforts that develop, sustain and study the outcomes
        associated with natural and other non-traditional long term care
        and vocational supports.

    -   Information dissemination on strategies that foster natural
        supports.

-   Health and safety expectations, rules and monitoring mechanisms must
    be built around the lifestyles that people want for themselves. Like
    everyone else, people with disabilities should be spared lives that
    are dictated solely by what is comfortable to bureaucracies.
    Government-based quality assurance systems for service programs must
    recognize that individual differences mean that quality varies from
    person to person. Efforts to develop, evaluate and publicize
    innovative approaches to quality assurance/quality improvement must
    be supported.

-   People with disabilities should be taught the importance of learning
    how to develop a wide range of friends, to form one of the most
    important keystones in their natural support bridge to full
    inclusion in their communities.

**VII. Health and Wellness: Promoting Optimal Health**

*For millions of Americans with disabilities, the lack of access to
comprehensive health care undermines the promise of the Americans with
Disabilities Act for inclusion, independence and empowerment.*

Allan Bergman, Advocate, Policy Analyst and Parent (Washington, DC)

There is a continuing health care crisis in the country, one that
disproportionately affects children and adults with disabilities and
their families.

Although new legislation will improve access to health insurance for
many with \"pre-existing conditions,\" others will be excluded because
they are currently uninsured or are not covered through employment-based
programs.

Current health insurance plans are also biased toward acute care, often
failing to cover medically necessary services for people with chronic
illnesses and conditions.

Managed care, while holding some promise of coordination and of cost
effective early intervention and preventive care, presents challenges
for people with mental retardation and related disabilities in
implementation. Concerns include continuity of care, access to
specialists familiar with the individual and with disabilities, and
coverage of needed services on a long-term basis. Managed care in both
the public and private insurance sectors bears watching to ensure that
the needs of people with disabilities are addressed.

The Medicaid program has over 30 years of success as a significant
resource to people with mental retardation. This Federal-State
partnership has been an essential part of the safety net for individuals
and their families, supporting a wide range of acute and long term care
services across the nation. Medicaid also is a major resource to local
education agencies in supporting children with disabilities, where it is
estimated that 30 to 40 percent of special education students under
IDEA, from infants to young adults, are also Medicaid-eligible.

Partnerships between education and Medicaid programs are greatly
benefitting children with disabilities as well as helping with local
special education costs.

Although not implemented as fully as it could be, the Medicaid Early
Periodic Screening, Diagnosis and Treatment program has made a major
contribution to the health of low income children with disabilities, as
well as helping to prevent disabling conditions. Threats to health
service access for these children through a Medicaid block grant program
and elimination of the Supplemental Security Income benefit for
children, with its link to Medicaid eligibility, were defeated through
the Administration\'s leadership. It is generally expected, however,
that proposals to limit the Medicaid program and to eliminate Federal
safety net guarantees affecting health care will be reintroduced in the
coming year.

One of the most exciting areas emerging in health care for people with
mental retardation and related disabilities is a stronger focus on
health promotion and wellness, rather than the traditional emphasis on
disability and impairment. There is growing recognition among both
self-advocates and health professionals that we need to work on
abilities in health as well as other aspects of daily living, and on
changing health care practice to treat the whole person. Exercise,
nutrition and spiritual health are critical to everyone, especially
those with disabilities.

**HEALTH PROMOTION AND WELLNESS RECOMMENDATIONS**

-   Managed care should be closely monitored and evaluated regarding its
    impact on individuals with mental retardation and related
    disabilities, especially the implementation of managed care in long
    term services.

-   Information on State and private insurance managed care
    implementation, in particular the outcomes for people with
    disabilities, should be widely disseminated.

-   The Medicaid safety net should be protected. State flexibility
    should continue to be supported, but not to the extent that basic
    Federal standards for access and quality are eliminated.

-   The Medicaid Early Prevention Screening, Diagnosis and Treatment
    program should be expanded to populations that are socially
    disadvantaged.

-   National health promotion messages should be provided through public
    service announcements and other public education tools that are
    culturally and linguistically appropriate.

-   Funding should be made available for demographic studies that would
    identify medical and prevention issues within each State.

-   Training for future leaders in health care delivery and policy
    should include health and wellness for individuals with mental
    retardation and related disabilities.

VII. **Civil Rights and Cultural Diversity: Justice for All**

*People with disabilities are the most discriminated against population.
I hope President Clinton recognizes the need for services and supports
that promote community participation and interdependence with others,
and the need to support the agencies and staff who work with people with
disabilities.*

Sally Jochum, Community Living Coordinator (Kansas)

The United States consists of a diverse population, and we must make a
conscious effort to meet the needs of all our people. Too often,
however, little consideration is given to the needs of
African-Americans, Hispanic­Americans, Asian-Americans, Native Americans
and other members of minority populations with disabilities. People -
including some of those with disabilities who are not members of
minority groups - tend to ignore the ways that education, employment and
empowerment uniquely affect people of color with disabilities. At the
same time, there is also growing recognition that it takes different
individuals with disabilities to make up a strong and vibrant disability
rights movement, with growing recognition of the importance of people of
color with disabilities to the movement\'s survival.

With the passage of the Americans with Disabilities Act in July 1990,
the disability rights issue clearly assumed its rightful place as a
major civil rights movement in the eyes of the nation. Its
implementation has been reflected in increased employment ratios among
adults with disabilities, expanded access to commercial, governmental
and recreational facilities, and enhanced public awareness of disability
rights. Resources also have been significant in reaching individuals
with disabilities, to inform them of their rights under the Americans
with Disabilities Act, as well as providing information and training to
organizations on compliance.

Continued vigilance is needed, however, to improve ADA implementation.
Consistent enforcement needs to be vigorously maintained, along with
resources that support cost effective compliance. People with
disabilities must have access to advocacy services that can help them
use the remedies specified in the Act. This access is particularly
important for people with disabilities who are less able to speak for
themselves due to poverty, powerlessness, or physical or mental
limitations. Rights without remedies are no rights at all.

Individuals who are both members of racial minorities and have a
disability commonly meet multiple barriers. Some specific issues facing
people of color who have a disability include over-representation in
special education, in institutions for people with mental retardation
and mental illness, and in the criminal justice system; and the
disparity in death penalty cases for African­ Americans and for people
with mental retardation.

There are also strong cultural issues in minority communities that
affect people with disabilities, some of which act as barriers to
seeking and accepting the services that are available - especially when
services and supports are not culturally competent.

**CIVIL RIGHTS AND CULTURAL DIVERSITY RECOMMENDATIONS**

-   Recognize and address the problems faced by people with disabilities
    whose color, race, religion or ethnic background differs from that
    of the dominant culture.

-   Otherwise qualified immigrants with disabilities should not be
    excluded from government-funded health and social supports.

-   In addressing the need to balance choice and safety issues,
    clarification is needed on conflicts between civil rights and
    protective mandates and on liability issues for provider
    organizations when they fully support the individual civil rights of
    people with mental retardation.

-   State Bar admission examiners and law schools should focus increased
    attention on disability issues.

-   Police officers, judges, public defenders and corrections officials
    should recognize the presence of people who have disabilities within
    these systems.

-   Alternative sentencing options should be considered for people with
    mental retardation and related disabilities. Model programs
    addressing the needs of people with disabilities accused of crimes
    should be expanded.

-   An effort should be made to educate judges, prosecutors, district
    attorneys, law enforcement personnel and others in the criminal
    justice system regarding the special problems of people with
    disabilities who are crime victims.

-   Education about people\'s civil and criminal rights should include
    discussion of the responsibilities inherent in those rights and the
    means for enforcing civil rights provisions.

-   Education about rights, responsibilities and enforcement should be
    provided in the language of the person receiving that education.

**IX. Research and Development: Informing Policy Decisions**

*The Symposium gave me renewed energy about my research and a sense of
hope for the future. I would like to be creative when addressing issues
of supported living, supported employment, mental health and supports
that help prevent mental health problems of people with mental
retardation. Research can become more relevant and inclusive, with
teamwork that includes self-advocates and family members.*

Yona Lunsky, Researcher and Family Member (Ohio)

The President\'s Committee on Mental Retardation and the National
Institute of Child Health and Human Development, National Institutes of

Health, have worked together since the early 1960s. In 1996 the
Institute collaborated with the Committee in supporting the Next
Generation Leadership Symposium. Many research advances have occurred
over these years that have helped to prevent mental retardation and to
improve the lives of people with mental retardation. Mental retardation
prevention achievements include vaccines for measles, encephalitis and
rubella; Rhogam to prevent rH incompatibility and jaundice that causes
bilirubin encephalopathy; PKU screening; and the development of a
vaccine for Haemophilus influenzae type b meningitis (Hib), previously
the leading cause of acquired mental retardation in the United States.
Hib meningitis cases have dropped from about 15,000 per year to less
than 200 in 1995.

Current work is rapidly expanding the understanding of genetic
mechanisms associated with mental retardation, while work continues on
infectious diseases. Advances in molecular medicine are improving our
ability to prevent and diagnose mental retardation and related
disabilities, and to better manage the care and treatment of disorders.
Additional knowledge can be developed to extend these capabilities,
coupled with efforts to assure that information already available
benefits individuals and families.

Research also can make a significant contribution to the policy debate
on services and supports. Research on the links between poverty,
nutrition and mental retardation provide solid evidence of the essential
need for safety net programs to be maintained. Research on family­based
care, on waiting lists and bottlenecks in the service system, and on the
shift from services to supports and from facility-based services to
supports that are organized on a flexible, person-by-person basis - can
inform policy decisions at the Federal, State and local level. Better
knowledge on the sources of variation in the \"lived experience\" of
mental retardation is at the heart of the social policy research
enterprise. Information on best practices, as well as practices to be
avoided, is essential to program decision-makers and advocates as they
examine current systems.

Given the substantial moral and financial investment we make in this
country toward the care of people with mental retardation and related
disabilities, and in light of the vibrant self-advocacy evident within
the disability community, it is imperative that we spend our talents and
resources on the most humane and productive modes of support. The needs
of families - the most durable support system for people with mental
retardation - have long been ignored in public policy arenas. The growth
of family support programs, including respite services and cash
assistance, is a positive development. The need for alternatives to
family-based care is also evident.

The identification of new strategies to smooth out the bottlenecks and
to develop new patterns of support is one of our most compelling
challenges as we enter

the 21 st century. There is also growing impetus for participatory
research - research that involves individuals with disabilities in
meaningful roles, from design to implementation, and research that is
relevant, useful and accessible to those on the front lines of program
management and implementation.

**RESEARCH AND DEVELOPMENT RECOMMENDATIONS**

-   People with disabilities should be involved and fully supported in
    all facets of research on disability issues, including learning how
    research is conducted.

-   Research should clearly be linked to outcomes and action. Relevant
    research on behalf of people with disabilities should be translated
    into appropriate policies and implementation. Existing research
    should be re-examined and used in new ways.

-   Key stakeholders and people from different fields, including
    self-advocates, should be brought together to work toward greater
    involvement in research with findings in which they have a vested
    interest.

-   Research should be supported that respects the individuality of
    people with disabilities, including research across the lifespan and
    on people with different needs and of different cultures.

-   Research should be conducted on the effects of family and other
    environmental factors on children\'s disabilities and achievements,
    and on the effects on people with mental retardation and related
    disabilities of policy decisions in other areas.

-   More research should be accessible to the average person so that it
    can be understood and used. As appropriate, findings should be
    broadly disseminated to policy makers, people with disabilities,
    families, direct support workers and the general public.

-   People with disabilities who participate as subjects in research
    projects should be made fully aware of the meaning of \"consent.\"

-   Efforts to encourage the next generation of leaders to become
    involved in research in the field of mental retardation and related
    disabilities should be expanded, including outreach, research
    training opportunities, and broader grant support.

-   Research should be funded primarily at the national and not the
    State level.

**X. Summary**

*The meeting made me feel like a leader. It made me feel important to
speak to so many people and helped me think about what job I will have
when I grow up. Perhaps 1 will work for disability rights or be a
speaker.*

Beth Terrill, Student and Self-Advocate (Illinois)

Symposium participants represent emerging leadership across the nation.
From the meeting they brought back new ideas, increased understanding of
issues affecting their work and of different approaches being tried
around the country, a network of contacts for continuing dialogue, and a
renewed dedication to the field of mental retardation. Their enthusiasm
for another Symposium was strong; the Committee will convene the second
Next Generation Leadership Symposium in August 1997.

Voices of young leaders will also be heard over the next several years
as they build on the Next Generation Leadership Symposium experience.
Personal visions of leadership include:

-   Expanding dialogue with self-advocates.

-   Conducting research that makes a difference in people\'s lives.

-   Helping to provide answers to new questions on supported living,
    supported employment and good mental health.

-   Being part of the direct support workers\' movement into leadership
    roles.

-   Sharing the power and the glory and helping other self-advocates
    become leaders.

-   Making a difference even if on a small scale - a difference in just
    one person\'s life is important.

-   Increasing knowledge and sharing it with others.

-   Becoming more involved in community education.

-   Seeking more knowledge of how the system works and what affects
    individuals.

-   Becoming more politically active.

-   Continuing the dialogue with people around the nation.

-   Building teamwork between direct support workers and self-advocates.

-   Helping communicate the need for effective services and supports.

The spirit of these visions is captured in the following lines by
Langston Hughes, presented at the Symposium by Lesa Nitcy Hope in her
acceptance of the Elizabeth Monroe Boggs Award for Leadership:

*There is a dream within the land with its back against the wall.*

*To save the dream for one of us, it must be saved for all.*

These young leaders are an inspiration who refresh and renew the
Committee\'s spirit.

> **APPENDIX PCMR CITIZEN AND EX-OFFICIO MEMBERS**
>
> Valerie J. Bradley Chair, President\'s Committee on Mental Retardation
> Washington, D.C.

Lorenzo H. Aguilar-Melancon

President

Perspectiva

7237 Tierra Alta

El Paso, Texas 79912

Phone: 915-577-0990

FAX: 915-577-9099

Jane L. Browning

Director

Division of Membership Services and Publications

National Association of Social Workers

750 First Street, N.E.

Suite 700

Washington, D.C. 20002-4241

Phone: 202-336-8214

1-800-638-8799, ext. 214

FAX: 202-336-8312

[E-Mail: jbrownin@naswdc.org](mailto:jbrownin@naswdc.org)

Valerie J. Bradley

President

Human Services Research Institute

2336 Massachusetts Avenue

Cambridge, Massachusetts 02140

Phone: 617-876-0426

FAX: 617-492-7401

[E-Mail: valbrad@aol.com](mailto:valbrad@aol.com)

Robert D. Dinerstein, J.D.

Associate Dean for Academic Affairs

Washington College of Law

at American University

4801 Massachusetts Avenue, N. W.

Washington, D.C. 20016

Phone: 202-274-4141

FAX: 202-274-4015

[E-Mail: rdiners@wcl.american.edu](mailto:rdiners@wcl.american.edu)

Steven M. Eidelman

President/CEO

Arlington Health Foundation

1701 North George Mason Drive

Arlington, Virginia 22205-3698

Phone: 703-558-6613

FAX: 703-558-5941

[E-Mail:
steven.eidelman@va.columbia.net](mailto:steven.eidelman@va.columbia.net)

Ann M. Forts

Self-Advocateand Motivational Speaker

P.O. Box 644

Center Harbor, New Hampshire 03226

Phone: 603-253-6722

FAX: 603-279-4582

Gisselle Acevedo Franco, J.D.

Director

Communications and Public Relations Medpartners

5000 Airport Plaza Drive

Long Beach, California 90815

Phone: 310-497-4989

FAX: 310-497-4985

Joyce A. Keller

3567 Lakewood Drive

Waterford, Michigan 48329

Phone: 810-352-5272

FAX: 810-352-5279

John F. Kennedy, J.D.

President

Reaching Up, Inc.

434 East 52nd Street

Suite lE

New York, New York 10022

Phone: 212-754-6750

FAX: 212-754-0203

Ruth Luckasson, J.D.

Regents Professor and Professor of Special Education

College of Education University of New Mexico

Albuquerque, New Mexico 87131

Phone: 505-277-7231

FAX: 505-277-8360

[E-Mail: ruth@unm.edu](mailto:ruth@unm.edu)

Elizabeth C. Pittinger

Regional Director

Step-by-Step

809 Grandview Avenue

Pittsburgh, Pennsylvania 15211

Phone: 412-381-3800

FAX: 412-381-8334

[E-Mail: ecpitt@aol.com](mailto:ecpitt@aol.com)

K Charlie Lakin, Ph.D.

Director

Rehabilitation Research and Training Center on Community Living

University of Minnesota

214 Pattee Hall

150 Pillsbury Drive

Minneapolis, Minnesota 55455

Phone: 612-624-5005

FAX: 612-625-6619

[E-Mail: lakin001](mailto:lakin001) @[maroon.
tc.umn.edu](http://maroon.tc.umn.edu/)

T.J. Monroe

Disability Rights Consultant

1156 Waycross Road, Apt. A109

Cincinnati, Ohio 45240

Phone: 513-825-5771

Michael L. Remus

Director of Special Education Kansas State of Board of Education

120 S.E. 10th Avenue

Topeka, Kansas 66612-1182

Phone: 913-291-3097

FAX: 913-296-1413

[E-Mail:
mremus@smtpgw.ksbe.state.ks.us](mailto:mremus@smtpgw.ksbe.state.ks.us)

Tom E.C. Smith, Ed.D.

Associate Professor

Department of Teacher Education

University of Arkansas at Little Rock

215 Crystal Court

Little Rock, Arkansas 72205

Phone: 501-569-3016

FAX: 501-569-8694

[E-Mail: tesmithl@ualr.edu](mailto:tesmithl@ualr.edu)

Deborah M. Spitalnik, Ph.D.

Executive Director

University Affiliated Programs of New Jersey (UAPNJ)

Brookwood II - 2nd Floor

45 Knightsbridge Road P.O. Box 6810

Piscataway, New Jersey 08855-6810

Phone: 908-235-4447

FAX: 908-235-5059

[E-Mail: spitalde@umdnj.edu](mailto:spitalde@umdnj.edu)

Cathy Ficker-Terrill

Vice-President of Quality and Strategic Planning

Ray Graham Association

683 Prospect

Elmhurst, Illinois 60126

Phone: 630-530-4554

FAX: 630-832-7337

[E-Mail: cfterrill@aol.com](mailto:cfterrill@aol.com)

Jacquelin B. Victorian, MSW

Executive Director

Independent Living, Inc.

474 North Foster Drive

Baton Rouge, Louisiana 70806

Phone: 504-924-7998

FAX: 504-924-7715

Barbara Yoshioka Wheeler, Ph.D.

Associate Professor of Clinical Pediatrics

University -Affiliated Program

Mailstop #53

Children\'s Hospital of Los Angeles

P.O. Box 54700

Los Angeles, California 90054-0700

Phone: 213-669-2300

FAX: 213-953-0439

[E-Mail:
bwheeler%smtpgate@chlais.usc.edu](mailto:bwheeler%25smtpgate@chlais.usc.edu)

Sheryl White-Scott, M.D.

Director

Adult Health Services

Westchester Institute for Human Development

221 Cedarwood Hall

Valhalla, New York 10595-1689

Phone: 914-285-8714

FAX: 914-285-1973

[E-Mail: sheryl](mailto:sheryl) <white@nymc.edu>

\*\*Virginia J. Williams

1730 Hancock Avenue, Apt. B

Norfolk, Virginia 23509

Home: 804: 627-0835

\*The Honorable Donna E. Shalala

Secretary of Health and Human Services U.S.

Department of Health and Human Services (DHHS)

200 Independence Avenue, S. W.

Washington, D.C. 20201

Phone: 202-690-7000

\*The Honorable Janet F. Reno

Attorney General

U.S. Department of Labor (DoJ)

10th & Pennsylvania Avenue, N. W.

Washington, D.C. 20530-0001

Phone: 202-514-2001

\*The Honorable Alexis M. Herman

Secretary of Labor

U.S. Department of Labor (DoL)

200 Constitution Avenue, N.W.

Washington, D.C. 20210

Phone: 202-219-8271

\*The Honorable Andrew Cuomo

Secretary of Housing and Urban Development

U.S. Department of Housing and Urban Development (HUD)

451 7th Street, S.W.

Washington, D.C. 20410-0001

Phone: 202-708-0417

\*The Honorable Richard W. Riley

Secretary of Education

U.S. Department of Education (DoE)

400 Maryland Avenue, S.W.

Washington, D.C. 20202-0001

Phone: 202-401-3000

\*Harris Wofford

Chief Executive Officer

Corporation for National and Community Service (CNCS)

1100 Vermont Avenue, N.W.

Room 6 100

Washington, D.C. 20525

Phone: 202-606-5000

\*Gilbert Casellas

Chair

Equal Employment Opportunity Commission (EEOC)

1801 L Street, N.W., 10th Floor

Washington, D.C. 20507

Phone: 202-663-4900

FAX: 202-663-7022

\*Marca Bristo

Chair

National Council on Disability (NCD)

1331 F Street, N.W., Suite 1050

Washington, D. C. 20004

Phone: 202-272-2004

FAX: 202-272-2022

\*The Honorable John L. Callahan

Acting Commissioner of Social Security

Social Security Administration (SSA)

900 Altmeyer Building

6401 Security Boulevard

Baltimore, Maryland 21235-0001

Phone: 202-358-6000

FAX: 202-358-6077 or 6078

\*Ex-Officio Member

\*\* Deceased

**PCMR STAFF**

**Administration for Children and Families**

**President\'s Committee on Mental Retardation**

**Hubert H. Humphrey Building, Rm. 352-G**

**200 Independence Avenue, S.W.**

**Washington, D.C. 20201-0001**

**Phone: 202-619-0634**

**FAX: 202-205-9519**

Gary H. Blumenthal

Executive Director

John L. Pride

Deputy Executive Director

Laverdia T. Roach

Acting Deputy Executive Director

Yolande Bestgen

Director of Special Projects

Acting Special Assistant to the Executive Director

George H. Bouthilet, Ph.D.

Research Director

Thelma B. Lucas

Mental Retardation Program Specialist

Joan Williams

Special Projects Specialist

Bena Smith

Program Analyst

Sheila Whittaker

Budget Officer

Peggy Butler

Secretary to the Executive Director

Angie Green

Secretary to the Deputy Executive Director

Terry Lion

Clerk-Typist

Dina Bergman

Clerk-Typist

**FEDERAL AGENCIES SERVING PEOPLE WITH M/R & DD**

Administration on Developmental Disabilities

U.S. Department of Health and Human Services

Room 329D, Hubert H. Humphrey Building

200 Independence Avenue, S.W.

Washington, D.C. 20201

PH: 202-690-6590

FAX: 202-690-6904

Centers for Disease Control and Prevention

Center for Environmental Health

Developmental Disabilities Branch

Health Resources and Services Administration

U.S. Department of Health and Human Services

4770 Buford Highway, NE

Mail Stop F15

Atlanta, Georgia 30341-3724

PH: 770-488-7360

FAX: 770-488-7361

Maternal and Child Health Bureau

Division of Services for Children with Special Health Needs

Health Resources and Services Administration

U.S. Department of Health and Human Services

Parklawn Bldg. - Room 18A-27

5600 Fishers Lane

Rockville, MD 20857

PH: 301-443-2350

FAX: 301-443-1728

Mental Retardation and Developmental Disabilities Branch

National Institute of Child Health and Human Development

National Institutes of Health

U.S. Department of Health and Human Services

6100 Executive Boulevard - Room 4B09

Mail Slot 7510

Bethesda, MD 20892-7510

PH: 301-496-1383

FAX: 301-496-3791

President\'s Committee on Mental Retardation

Administration for Children and Families

U.S. Department of Health and Human Services

Room 352G, Humphrey Building

200 Independence Avenue, S.W.

Washington, D. C. 20201

PH: 202-619-0634

FAX: 202-205-9519

President\'s Committee on Employment of People with Disabilities

1331 F. Street, NW - 3RD Floor

Washington, DC 20004-1107

PH: 202-376-6200

FAX: 202-376-6219

WEB: [http://www.pcepd.gov](http://www.pcepd.gov/)

Office of Special Education and Rehabilitative Services

Secondary Education and Transition Services Branch

U.S. Department of Education

Room 4625, Mary E. Switzer Bldg.

330 C. Street, S.W.

Washington, D.C. 20202

PH: 202-205-8112

FAX: 202-205-8971

Office of Disability

Social Security Administration

Room 545, Altmeyer Bldg.

6401 Security Boulevard

Baltimore, MD 20235

PH: 410-965-3424

FAX: 410-965-6503

WEB: <http://www.ssa.gov/odhome>

Housing and Civil Enforcement Section

Civil Rights Division

U.S. Department of Justice

P.O. Box 65998

Washington, D.C. 20035

PH: 202-514-4713

FAX: 202-514-1116

Division of Adult Education and Literacy

Office of Vocational and Adult Education

U.S. Department of Education

Room 4428,

Mary E. Switzer Building 330 C. Street, SW

Washington, D.C. 20202

PH: 202-205-9872

FAX: 202-205-8973

WEB: <http://www.ed.gov/offices/OVAE>

National Council on Disability

1331 F. Street, NW, Suite 1050

Washington, D. C. 20004

PH: 202-272-2004

FAX: 202-272-2022

WEB: [http://www.ncd.gov](http://www.ncd.gov/)

Office of Special Institutions

Office of Special Education & Rehabilitative Services

U.S. Department of Education Room 3125,

Mary E. Switzer Bldg. 330 C. Street, SW

Washington, D.C. 20202-2524

PH: 202-205-8555

FAX: 202-205-9252

National Institute on Disability and Rehabilitation

Research Office of Special Education & Rehabilitative Services

U.S. Department of Education

600 Independence Avenue, SW

Washington, D. C. 20202-2572

PH: 202-205-8134

FAX: 202-205-8515

WEB: <http://www.ed.gov/offices/OSERS/NIDRR>

Office of the Assistant Secretary

Administration for Children and Families U.S.

Department of Health and Human Services

Suite 600, 371 L\'Enfant Promenade, SW

Washington, D.C. 20447

PH: 202-401-9200

FAX: 202-401-5770

WEB: [[http://www.acf.dhhs.gov]{.underline}](http://www.acf.dhhs.gov/)

Office of Legal Counsel

Equal Employment Opportunity Commission

1801 L. Street, NW

Washington, D.C. 20507

PH: 202-663-4691

FAX: 202-663-4693

Program Compliance

& Disability Rights Division

U.S. Department of Housing and Urban Development (HUD)

451 7th Street, SW

Washington, D.C. 20410

PH: 202-708-2618

FAX: 202-708-1251

Office of Special Education and Rehabilitative Services

U.S. Department of Education

Room 3330, Mary E. Switzer Building

330 C. Street, SW

Washington, D.C. 20202

PH: 202-205-9297

FAX: 202-205-9772

AmeriCorps State/National AmeriCorps

National Service Corporation for National Service

1201 New York Avenue, NW

Washington, D. C. 20525

PH: 202-606-5000

FAX: 202-565-2787

WEB: [http://www.cns.gov](http://www.cns.gov/)

**PRIVATE AGENCIES SERVING PEOPLE WITH M/R & DD**

The Arc

National Headquarters

500 East Border Street Suite 300

Arlington, Texas 76010

PH: 817-261-6003

FAX: 817-277-3491

WEB: [http://www.thearc.org](http://www.thearc.org/)

American Association on Mental Retardation

444 North Capitol Street, NW

Suite 846

Washington, D.C. 20001

PH: 202-387-1968

FAX: 202-387-2193

WEB: [http://www.aamr.org](http://www.aamr.org/)

National Association of Protection and Advocacy Systems

900 2nd Street, NE Suite 211

Washington, D.C. 20002

PH: 202-408-9514

FAX: 202-408-9520

WEB: <http://www.protectionandadvocacy.com/index>.

American Network of Community Options and Resources

4200 Evergreen Lane, Suite 315

Annandale, Virginia 22003

PH: 703-642-6614

FAX: 703-642-0497

WEB: [http://www.ancor.org](http://www.ancor.org/)

National Association of State Directors of Developmental Disabilities
Services

113 Oronoco Street

Alexandria, Virginia 22314

PH: 703-683-4202

FAX: 703-684-1395

WEB: [http://www.nasddds.org](http://www.nasddds.org/)

American Association of University Affiliated Programs for Persons with
Developmental Disabilities

8630 Fenton Street, Suite 410

Silver Spring, MD 20910

PH: 301-588-8252

FAX: 301-588-2842

WEB:
[[http://www.waisman.wisc.edu/aauap]{.underline}](http://www.waisman.wisc.edu/aauap)

Association of Public Developmental Disabilities Administrators

9901 Braddock Road

Fairfax, Virginia 22032

PH: 703-323-4002

FAX: 703-323-4252

United Cerebral Palsy Association, Inc.

1660 L. Street, N. W.

Suite 700

Washington, D.C. 20036

PH: 202-776-0406

FAX: 202-776-0414

WEB: [http://www.ucpa.org](http://www.ucpa.org/)

Special Olympics International

1325 G. Street, NW

Washington, D.C. 20005

PH: 202-824-0257

FAX: 202-824-0200

WEB: [http://www.specialolympics.org](http://www.specialolympics.org/)

National Parent Network on Disabilities

1727 King Street Suite 305

Alexandria, Virginia 22314

PH: 703-684-6763

FAX: 703-836-1232

WEB: [http://www.npnd.org](http://www.npnd.org/)

American Speech-Language-Hearing Association

10801 Rockville Pike

Rockville, Maryland 20852

PH: 301-897-5700

FAX: 301-571-0457

WEB: http: //[www. asha. org](http://www.asha.org/)

National Association of Developmental Disabilities Councils

1234 Massachusetts Avenue, N.W.

Suite 103

Washington, D. C. 20005

PH: 202-347-1234

FAX: 202-347-4023

WEB: [http://www.igc.apc.org\\NADDC]()

Autism Society of America

7910 Woodmont Avenue Suite 650

Bethesda, MD 20814-3015

PH: 301-657-0881

FAX: 301-657-0869

WEB: [http://www.autism-society.org](http://www.autism-society.org/)

American Occupational Theraphy Association

4720 Montgomery Lane,

P.O. Box 31220

Bethesda, MD 20824-1220

PH: 301-652-2682

FAX: 301-652-7711

WEB: [http://www.aota.org](http://www.aota.org/)

National Down Syndrome Congress

1605 Chantilly Drive, Suite 250

Atlanta, Georgia 30324-3269

PH: 1-800-232-6372

FAX: 404-633-2817

WEB: http: //[members. carol. net/ndsc](http://members.carol.net/ndsc)

People First International

P.O. Box 12642

Salem, Oregon 97309

PH: 503-362-0336

FAX: 503-585-0287

Joseph P. Kennedy Jr. Foundation

1325 G. Street, NW - Suite 500

Washington, D.C. 20005

PH: 202-393-1250

FAX: 202-824-0351

WEB: <http://www.familyvillage.wisc.edu/jpkf>

Consortium for Citizens with Disabilities

1730 K. Street, NW - Suite 1212

Washington, D.C. 20006

PH: 202-785-3388

FAX: 202-467-4179

WEB: http://[www. radix. net/ \--](http://www.radix.net/--) ccd

Human Services Research Institute

2336 Massachusetts Avenue

Cambridge, Massachusetts 02140

PH: 617-876-0426

FAX: 617-492-7401

WEB: [http://www.hsri.org](http://www.hsri.org/)

New Jersey Center for Outreach and Services for the Autism Community
(COSAC)

1450 Parkside Avenue, Suite 22

Ewing, New Jersey 08638

PH: 609-883-8100

FAX: 609-883-5509

WEB: <http://members.aol.com/njautism/index.htm>

Community Services for Autistic Adults & Children

751 Twinbrook Parkway

Rockville, MD 20851

PH: 301-762-1650

FAX: 301-762-5230

National Down Syndrome Society

666 Broadway, Suite 810

New York, New York 10012

PH: 212-460-9330

FAX: 212-979-2873

WEB: [http://www.ndss.org](http://www.ndss.org/)