U.S. Department of Health and Human Services 

Administration for Children and Families 

President's Committee on Mental Retardation 

cover design by Richard Swartz 

text graphics by Kate Billings

1996 Report to the President 

Voices and Visions: 

Building Leadership for the 21st Century
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.

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 millenium, 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. 

 Sincerely, 

Valerie J. Bradley 

 Chair 

PRESIDENT'S COMMITTEE ON MENTAL RETARDATION 

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES 

Administration for Children and Families 

Washington, D.C. 20201-0000 
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 

i
ii

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. 
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. 

PCMR Report Page 1

REPORT TO THE PRESIDENT 

Voices and Visions: 

Building Leadership for the 21st Century 

The President's Committee on Mental Retardation 
PCMR Report Page 2

create for 

themselves a life 

that reflects 

independence, selfdetermination, and 

participation

as productive 

members of 

society. 

The Committee's 

goals recognize 

and uphold the 

right of all people 

with mental 

retardation to 

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. 
PCMR Report Page 3

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. 
PCMR Report Page 4

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 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 
PCMR Report Page 5

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. 
PCMR Report Page 6

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. 
PCMR Report Page 7

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. 
PCMR Report Page 8

 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. 
PCMR Report Page 9

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 critical 

need to 

empower and 

enhance direct 

support 

workers in the 

field of mental 

retardation 

was a 

Committee 

focus during 

1996. 
PCMR Report Page 10

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 replica of the National Collaborative Academy 

in June 1996, with nearly 300 attending. Participants 

explored the issues 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. 
PCMR Report Page 11

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 21st 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 their 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.) 
PCMR Report Page 12

 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. 
PCMR Report Page 13

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. 
PCMR Report Page 14

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. 

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. 
PCMR Report Page 15

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. 
PCMR Report Page 16

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. 

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. 
PCMR Report Page 17

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. 
PCMR Report Page 18

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. 
PCMR Report Page 19

 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. 
PCMR Report Page 20

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. 
PCMR Report Page 21

 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. 
PCMR Report Page 22

Ill. Public Policy: Changes, 

Choices and Challenges 

I intend to spend the next four years doing 

everything / 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 I met [Ann Forts,] a young woman 

from New Hampshire with Down syndrome - 

one of two people with mental retardation I 

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, December 11, 1996. 
PCMR Report Page 23

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. 
PCMR Report Page 24

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. 

 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. 
PCMR Report Page 25

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 
PCMR Report Page 26

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. 
PCMR Report Page 27

 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. 
PCMR Report Page 28

 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. 
PCMR Report Page 29

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 housingrelated 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. 
PCMR Report Page 30

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. 
PCMR Report Page 31

 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. 
PCMR Report Page 32

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. 

Waiting lists in 

many States 

number in the 

thousands. 

 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. 
PCMR Report Page 33

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. 
PCMR Report Page 34

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. 
PCMR Report Page 35

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 

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. 
PCMR Report Page 36

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. 
PCMR Report Page 37

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. 
PCMR Report Page 38

 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. 
PCMR Report Page 39

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 

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. 

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. 
PCMR Report Page 40

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. 
PCMR Report Page 41

 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. 
PCMR Report Page 42

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: 
PCMR Report Page 43

 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 
PCMR Report Page 44

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, 

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. 

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. 
PCMR Report Page 45

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. 
PCMR Report Page 46

 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. 
PCMR Report Page 47

 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 
PCMR Report Page 48

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 individuallycontrolled 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. 
PCMR Report Page 49

 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. 

 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. 
PCMR Report Page 50

 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. 
PCMR Report Page 51

Promoting Optimal Health

VII. Health and Wellness: 

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 

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. 
PCMR Report Page 52

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 benefiting 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. 
PCMR Report Page 53

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. 
PCMR Report Page 54

 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. 
PCMR Report Page 55

VIII. 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. 
PCMR Report Page 56

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. 

Individuals who are both members of racial 

minorities and have a disability commonly meet 

multiple barriers. Some specific issues facing people 

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. 
PCMR Report Page 57

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 AfricanAmericans 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. 
PCMR Report Page 58

 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. 
PCMR Report Page 59

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 
PCMR Report Page 60

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 
PCMR Report Page 61

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 

21st 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 also 

can make a 

significant 

contribution to 

the policy 

debate on 

services and 

supports. 

Information on 

best practices, 

as well as 

practices to be 

avoided, is 

essential to 

program 

decision-makers 

and advocates 

as they examine 

current systems. 
PCMR Report Page 62

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 
PCMR Report Page 63

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. 
PCMR Report Page 64

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 I 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. 
PCMR Report Page 65

 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. 
PCMR Report Page 66

 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 Valerie J. Bradley

President President 

Perspectiva Human Services Research Institute 

2336 Massachusetts Avenue 

Cambridge, Massachusetts 02140 

Phone: 617-876-0426 

7237 Tierra Alta 

El Paso, Texas 79912 

Phone: 915-577-0990 

FAX: 915-577-9099 FAX: 617-492-7401 

E-Mail: valbrad@aol.com 

Jane L. Browning 

Director Robert D. Dinerstein, J.D. 

Associate Dean for Academic Affairs 

Washington College of Law 

Division of Membership Services 

and Publications 

National Association of Social Workers at American University 

750 First Street, N.E. 

Suite 700 

4801 Massachusetts Avenue, N.W. 

Washington, D.C. 20016 

Washington, D.C. 20002-4241 Phone: 202-274-4141 

Phone: 202-336-8214 

1-800-638-8799, ext. 214 

FAX: 202-336-8312 

FAX: 202-274-4015 

E-Mail: rdiners@wcl.american.edu 

E-Mail: jbrownin@naswdc.org 

Steven M. Eidelman Ann M. Forts 

President/CEO Self-Advocate 

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 

and Motivational Speaker 

P.O. Box 644 

Center Harbor, New Hampshire 03226 

Phone: 603-253-6722 

FAX: 603-279-4582

Gisselle Acevedo Franco, J.D. Joyce A. Keller

3567 Lakewood Drive 

Waterford, Michigan 48329 

Phone: 810-352-5272 

Director 

Communications and Public Relations 

Medpartners FAX: 810-352-5279 5000 Airport Plaza Drive 

Long Beach, California 90815 

Phone: 310-497-4989 

FAX: 310-497-4985 
John F. Kennedy, J.D. 

President 

Reaching Up, Inc. 

434 East 52nd Street 

Suite 1E 

New York, New York 10022 

Phone: 212-754-6750 

FAX: 212-754-0203 

Ruth Luckasson, J.D. 

Regents Professor and Professor of Specia

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 

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 

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 

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 

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@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

l 

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 

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 

**Virginia J. Williams 

1730 Hancock Avenue, Apt. B 

Norfolk, Virginia 23509 

Home: 804: 627-0835 

*The Honorable Janet F. Reno 

Attorney General 

U.S. Department of Justice (DoJ) 

10th & Pennsylvania Avenue, N.W. 

Washington, D.C. 20530-0001 

Phone: 202-514-2001 

*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 

**Deceased

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_white@nymc.edu 

*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 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 

*Harris Wofford 

Chief Executive Officer 

Corporation for National and Community 

Service (CNCS) 

1100 Vermont Avenue, N.W. 

Room 6100 

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 

*Ex-Officio Member 

*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 
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 
FEDERAL AGENCIES 

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 

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 
FEDERAL AGENCIES 

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

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 
FEDERAL AGENCIES 

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 
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 

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 

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.htm 

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 

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 
PRIVATE AGENCIES 

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 

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 

Special Olympics International 

1325 G. Street, NW 

Washington, D.C. 20005 

PH: 202-824-0257 

FAX: 202-824-0200 

WEB: 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 
PRIVATE AGENCIES 

American Speech-Language-Hearing 

Association 

10801 Rockville Pike 

Rockville, Maryland 20852 

PH: 301-897-5700 

FAX: 301-571-0457 

WEB: 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 

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 

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 

People First International 

P.O. Box 12642 

Salem, Oregon 97309 

PH: 503-362-0336 

FAX: 503-585-0287 
PRIVATE AGENCIES 

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. wise. 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/ ~ ccd 

Human Services Research Institute 

2336 Massachusetts Avenue 

Cambridge, Massachusetts 02140 

PH: 617-876-0426 

FAX: 617-492-7401 

WEB: 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 

*U.S. Government Printing Office: 1997 - 520-562/90153