DISCLAIMER 

Information contained in the President's Committee on Mental Retardation Report to the President - The National 

Reform Agenda and Citizens with Mental Retardation: A Journey of Renewal for All Americans, was researched, 

collected and analyzed by experts in the field of mental retardation for the Presidential Forum, "The President's 

Reform Agenda and People with Mental Retardation - 21st Century Realities," under contract with the U.S. 

Department of Health and Human Services, Administration for Children and Families, President's Committee on 

Mental Retardation. 

The Report summarizes the research and opinions of participants at the Presidential Forum, "The President's Reform 

Agenda and People with Mental Retardation - 21st Century Realities." It was unanimously endorsed by all voting 

members of the President's Committee on Mental Retardation, in attendance at the PCMR quarterly meeting on 

November 18, 1994. Report to the President - The National Reform Agenda and Citizens with Mental 

Retardation: A Journey of Renewal for All Americans does not necessarily reflect the views of any agency 

within the U.S. Department of Health and Human Services.

This document may not be reproduced without permission. 
1994

U.S. Department of Health and Human Services 

Administration for Children and Families 

President's Committee on Mental Retardation

Washington, DC 

The National Reform Agenda and Citizens with Mental

Retardation: 

A Journey of Renewal for All Americans 

REPORT TO THE PRESIDENT 

April 19, 1995

The President 

The White House 

Washington, D.C. 20500 

Dear Mr. President: 

I am pleased to introduce to you the 1994 Annual Report of the 

President's Committee on Mental Retardation (PCMR) entitled The 

National Reform Agenda and Citizens with Mental Retardation: A

Journey of Renewal for All Americans.

The Report reflects the contributions of 26 self-advocates, 

parents and family members who as experts in the area of mental 

retardation, collaborated with professionals in the field and 

Federal and State partners to produce this Report. It includes 

recommendations made within the context of welfare and health 

care reform and more broadly, recommendations that reflect the 

principles of empowerment, equality and justice. 

This document, authored by Dr. Glenn Fujiura of the University of 

Illinois at Chicago, emanates from the 1994 PCMR Presidential 

Forum which produced a new vision for Americans with mental 

retardation and their families. The recommendations provide an 

ambitious outline for action which reflect the dedication and 

commitment of the Committee members in meeting their 

responsibility to work as advocates for persons with mental 

retardation. 

Included in this report is a quote from Linda Preston about her 

son Elijah, "...They didn't see his disability. They just saw 

the music in him." It is within the spirit of Linda Preston's 

dreams for her son, and on behalf of the dreams of my fellow 

Americans who confront mental retardation and related 

disabilities daily, that I offer this report for your 

consideration. 

Sincerely, 

T H E S E CRET A RY OF HEAL T H AND HUMAN S E RVICES 

W A SHINGTO N , D.C . 20201 

Donna E. Shalala

Enclosure 

President's Committee on Mental Retardation Members & Staff 

April 1994 Forum Advisory Planning Committee 

TABLE OF CONTENTS 

Acknowledgements.............................................................. i

Preface .................................................................................. ii 

Introduction .............................................................. 1 

Part I: A promise not fully realized ........................... 2 

Part II: The new American community ................... 4 

School ....................................................................... 6 

Home ........................................................................ 10 

Work ........................................................................ 15 

Part III: The dignity of our citizens .............................. 19 

Health ...................................................................... 21 

Welfare .................................................................... 27 

Long-Term Care ..................................................... 31 

IV Epilogue: Putting People First .............................. 35 

Appendices 

ACKNOWLEDGEMENTS 

The President's Committee on Mental Retardation (PCMR) gratefully acknowledges the 

insight and perceptive analysis of Glenn Fujiura, Ph.D., University of Illinois at Chicago, 

Institute on Disability and Human Development, who authored the Committee's 1994 Annual 

Report to the President. 

The Annual Report and the Proceedings of the 1994 Presidential Forum, which served as 

the basis for the Report, were unique in many respects. Reflecting President Clinton's 

commitment to empowerment and inclusion of all Americans, this Report is historic through the 

active participation and leadership of many self-advocates and parents whose dynamic 

contributions helped shape the tone of each of the PCMR recommendations. The President's 

Committee would particularly like to acknowledge the contributions of the 26 self-advocates 

who were active participants at the Presidential Forum. The Committee is especially grateful to 

T.J. Monroe of Nashville, Tennessee, and Tia Nelis of Naperville, Illinois, who were Forum 

Keynoters, along with parent advocates Koquese Collins of Detroit, Michigan, Dawn and Don 

Merriman of Salina, Kansas, and Linda Charlton of Bel Air, Maryland. The passion, love, and 

clarity of mission articulated by both parent and self-advocate participants helped guide every 

discussion held at the Forum. 

In composing the Report to the President, Dr. Fujiura was greatly aided by the 

contributions, writings, and technical papers of the PCMR Forum Advisory Committee and 

Workgroup Leaders including William E. Jones, Ph.D., Executive Director of the American 

Association of University Affiliated Programs, chair of the PCMR Forum Advisory Committee 

and members: Kathy Beyer; David Braddock, Ph.D.; Sharon Davis, Ph.D.; Steve Eidelman; 

Rob Horner, Ph.D.; Matthew P. Janicki, Ph.D.; K. Charlie Lakin, Ph.D.; David Mank, Ph.D.; 

Paul Marchand; Jan Nesbit, Ph.D.; Sharon Ramey, Ph.D.; Frank Rusch, Ph.D.; Marsha Seltzer, 

Ph.D.; Steve Taylor, Ph.D.; Alexander J. Tymchuk, Ph.D.; and Paul Wehman, Ph.D. 

The Committee also wishes to express its appreciation for the leadership and guidance of 

Administration for Children and Families (ACF) Assistant Secretary, Mary Jo Bane; and Deputy 

Assistant Secretary for Policy and External Affairs, Ann Rosewater. 

Additionally, the PCMR would like to express its deepest gratitude to Elizabeth 

Boggs, Ph.D., and Gunnar Dybwad, Ph.D., not only for their technical writings and 

expertise, but also their inspiration, wisdom, and lifelong commitment to inclusion and 

justice for individuals with mental retardation and related developmental disabilities. 

i 
PREFACE 

In April 1994, leaders from the field of mental retardation were gathered 

together in a forum sponsored by the President's Committee on Mental 

Retardation (PCMR). They were asked to evaluate the needs of Americans with 

mental retardation in the context of the Administration's domestic reform 

agenda. The Report to the President represents the synthesis of the forum's 

technical papers, deliberations, and analyses in the areas of education, housing, 

employment, health, welfare, and long-term care. Three core themes bind 

together the sections of the narrative and accompanying recommendations. 

First, there remain great unmet needs. A-significant transformation in the 

nation's care and treatment of its citizens with mental retardation has occurred. 

However, it is a transformation yet in progress. The report reflects the tension of 

the juxtaposition of accomplishments against the sense of urgency for critical 

tasks yet to be completed. For too many Americans with mental retardation, the 

reforms of the past three decades are merely unfulfilled promises. This is a 

central theme for the report's discussion of education, housing, and employment. 

Secondly, the real revolution will see the end of the premise of 

dependency that permeates our systems of care and support. This theme is 

embedded in key concepts throughout the report -- in the principles of choice 

and control, in the view of persons with mental retardation as citizens and 

constituents, and in the calls for meaningful inclusion. 

The third and final theme is the fundamental importance of individual 

dignity. It lies at the heart of report's discussion of health care, welfare, and 

long-term care. The report's recommendations are made against the backdrop of 

changes in the landscape of American governance since the April meetings. 

While we understand there are no convenient and readily implemented solutions 

for these domestic reform challenges, the needs and injustices described in the 

report will be as pressing tomorrow as they are today. For Americans with 

mental retardation, domestic reform must remain on the agenda. 

ii 
INTRODUCTION 

We stand at a crossroad in the nation's passage into the 

21st century. Long-standing assumptions about the relationship of

government and citizen in health care, education, employment,

and social welfare are being challenged. 

The choices made in this national debate will have 

profound implications for persons with mental retardation. They are

among the most vulnerable of American citizens. Like a mirror

held before the national renewal effort, the success of reform will 

be reflected in their lives and well-being. 

In the body of the following report, PCMR endeavors to 

chart the direction of future activities, policies, and strategies for

Americans with mental retardation in the context of the 

President's reform agenda. The assessment represents a 

distillation of the deliberations and recommendations of leaders 

in the field of mental retardation during a 3-day PCMR forum in

1994. 

REPORT TO THE PRESIDENT 

The National Reform Agenda and Citizens with Mental 

Retardation: 

A Journey of Renewal for All Americans 

The President's Committee on Mental Retardation 

PCMR Report Page 1

Our 

recommendations 

are made within 

the context of the 

President 's

domestic reform 

agenda -- they 

emanate from the

PCMR but reflect 

the principles of 

empowerment, 

equality, and 

justice as applied

to all our nation's 

citizens. 
I. A PROMISE NOT FULLY REALIZED 

"Our goals for Katie include wanting her to feel loved, to give her a sense of high 

self-esteem so that she can experience life with confidence. She is a very social child

and while I think she has a great capacity to make friends, I wonder how other 

children will accept her. We envision her attending public schools and one day hope

to see her graduate from high school. I wonder if she will ever get married, and if 

she doesn't, I hope someday she has a companion to enjoy life with, and if we could

we would like to see her remain as happy as she is today.” 

Linda Charlton, Maryland 

In her address to the PCMR, Linda Charlton described 

life with her 2-year old daughter, born with Down syndrome. 

She spoke of her goals and anxieties over what the future holds. 

In Linda Charlton's statement is the eloquence of parental love 

and the aspirations of families everywhere -- that our children 

find opportunity, dignity, and above all, love. 

The nation Katie was born into two years ago is far 

different for Americans with mental retardation from that first

described by PCMR in 1967 in its inaugural report, MR 67.

The Committee spoke then of the need to provide education, to 

improve the quality of institutions, to offer rudimentary services 

in the community, and to grant persons with mental retardation 

the elementary rights of citizenship.

The Federal Government responded and transformed 

national policy -- with prohibitions against discrimination on the 

basis of disability through the Rehabilitation Act of 1973 and the 

PCMR Report Page 2 
PCMR Report Page 3 

Americans with Disabilities Act of 1990, educational mandates 

in the Education for All Handicapped Children's Act and its 

amendments, and the institutional reforms and community 

expansion brought about through Federal legislation and 

precedent-setting litigation in the Federal courts. 

The transformation of national policy affecting people 

with mental retardation over the past 25 years represents one of 

the great social reform movements of our time. Policies are 

now in place at the Federal level that affirm the basic rights and 

fundamental human dignity of Americans with mental 

retardation. 

And yet, great needs still exist. Aspirations are 

unfulfilled. Elisha Preston was born 12 years after the 

publication of MR 67. His mother reflected on the hopes 

expressed by Linda Charlton -- "I remember taking walks with 

Elisha when he was an infant. Like any new parent I engaged 

in lots of idle thought about the future. Those were times of 

great expectation. I said the same things as Katie's mom. And 

a decade later my son has had the sweetness and kindness and 

joy sapped from him by a system and community that has done 

little but put barriers before him. It makes me want to cry." 

Real change and true reform require national leadership. 

President Clinton proposed a "journey of renewal." In 

this report, we point out the ways in which this journey will 

affect Americans with mental retardation. We respectfully 

ask for 
PCMR Report Page 4

your consideration of these recommendations --

recommendations that will transform promises into reality. 

II. THE NEW AMERICAN COMMUNITY: 

OUR SCHOOLS, HOMES, 

AND PLACES OF WORK 

The injustices experienced by people with mental 

retardation were great in 1967. One half of the nation's 25,000 

school districts denied access to children with mental 

retardation. State-operated institutions, at their peak census of 

nearly 200,000 residents, were the primary housing option. 

And the concepts of employment and self-sufficiency were 

hailed as "revolutionary" in PCMR's inaugural report of that 

year, which spoke of new ideas and fresh approaches. 

Our greatest challenge remains the infusion of new ideas 

-- ideas that will change, fully and irrevocably, the basic 

paradigm. Based on exclusion, isolation, and individual 

deficits, the old service model still stands as an obstacle to true 

reform. The emerging paradigm is anchored to the values of 

inclusion, collaboration, and individual determination. Through 

the Administration's domestic reform agenda, we have the 

unique opportunity to realize this new vision in the following 

areas: 

• Special education in the United States is a paradox of 

intent and effect. In order to redress the inequities created by
the exclusion of children with a disability from public school, 

policy-makers inadvertently created a system predicated on 

segregation. Special education's status as a parallel system must be

challenged. 

 Since 1967 the nation has reduced its reliance on 

institutional care while dramatically increasing community-based

housing. Yet the fundamental premise of residential care 

remains unchanged -- persons with mental retardation are the 

"occupants" of beds and "clients" of services. We must 

challenge this premise of dependency. 

 The success of integrated employment -- real work in 

real jobs -- is in its acceptance as a true goal for persons with 

mental retardation. Unfortunately, it is treated as only one 

alternative along the continuum. We must commit ourselves, 

totally and wholly, to a vision of equal opportunity in the work 

place. 

 School, housing, and work have been targets of reform 

efforts since MR 67. In 1967 the preeminent concerns focused on

access to public schools, quality of care in the state-operated 

institutional system, and lost employment potential. While these 

continue to be points of concern, the mix of issues is far more 

complex today. It is no longer solely a matter of where to 

locate a service, but rather how to redress the balance of power and 

choice in the service provider-consumer relationship. 

PCMR Report Page 5 

We are a nation 

of individuals 

bound together 

by the vision of

community and 

the sense of 

purpose defined 

by our citizenship 

and what 

America uniquely

represents. 

PCMR's report 

to the President 

is based on this 

fundamental 

assumption. 
What matters most to people with mental retardation and 

their families is that which is of importance to all Americans -to

belong to a larger community that endows its members with dignity 

anchored in a fundamental respect for the individual. We hope

that this aspiration, though not fully realized, will find fuller voice

in the reforms proposed by the Clinton 

Administration. 

PCMR Report Page 6 

SCHOOL

"I do not want the "retarded corner” of the school.”

Linda Preston, Illinois

The adoption of the Education of the Handicapped Act 

eliminated the exclusion of children with mental retardation 

from public education. It also created a "special education"

system that is separate both in operation and philosophical 

foundation. This contrived separateness limits opportunities for 

those within it, and perpetuates inequities and inefficiencies. 

The fundamental goal is unchanged from the early years 

of mandates -- equity in education. Yet the status of education 

for children with mental retardation is startling in its disparities.

Only seven in 100 students with mental retardation spend their

school day in classrooms with other children from their 
neighborhoods. Eleven out of every 100 students do not have access

to their community school, attending totally non-inclusive schools.

At the heart of the debate is the contemporary utility of the

dual system. Does the division of children -- into those who have a 

disability and those who do not -- continue to serve an educational

purpose?

Segregation does not enhance academic achievement and 

delays social adjustment. It encourages unnecessary labeling of 

children. It fosters placement on the basis of administrative 

convenience rather than educational need. How else to explain the

arbitrariness of segregation -- that only 35 percent of Vermont's

students are educated in separate classrooms compared to 97 percent 

in Iowa. Why should a special education student in Alabama be eight 

times more likely to be labeled "mentally retarded" than one in 

Arizona or New Jersey? Why should an African-American child in 

the special education system be twice as likely as a white child to be 

classified as having mental retardation? 

Segregation requires the classification of children in 

order to communicate their "deficits" and to demand narrow 

instructional specializations of their teachers. What has this 

classification and specialization achieved? Dropout rates from

special education exceed the national average. Post-secondary 

school unemployment rates approach 50 percent three to five 

The basic

premises and 

character of 

our dual

system of 

education are 

found to be 

wanting. It is 

time to act. 

PCMR Report Page 7 
years after leaving school. The segregated system fostered 

critical access to education in the early years of the mandates, but

it bought neither quality nor equity. 

Assumptions of the past often obstruct alternative visions of

the future. For students in need of specialized education, we must

revisit previous assumptions about where those services are delivered.

PCMR RECOMMENDATIONS: OUR

SCHOOLS 

The United States achieved access for children with 

mental retardation. Doors were opened and obstructions 

overcome. But access has not necessarily translated into 

equality of education nor quality of outcome. PCMR 

respectfully requests that you reaffirm the principle of a unified 

educational system and an end to Federal support for separation. 

We must unify education for all our children. 

PCMR Report Page 8 
PCMR Report Page 9

THE FEDERAL GOVERNMENT MUST AFFIRM THE PRINCIPLE OF

A UNIFIED EDUCATIONAL SYSTEM 

 End the fiscal barriers to inclusion. Eliminate fiscal incentives 

for dual systems. Link Federal funds authorized under The 

Individuals with Disabilities Education Act (IDEA) to total state 

school population rather than the number of labeled students. 

 Let the children come home. Eliminate fiscal incentives for out-ofdistrict placements. Federal funds authorized under P.L. 89-313 should 

be directly linked to each child's home school district. 

 Provide a Federal vision. Unify and apply the reform agenda 

across Federal agencies. Federal agencies involved in education

should coordinate their training, research, policy, and technical 

assistance missions. The U.S. Department of Education's Office of

Special Education and Rehabilitation Services (OSERS) should make 

placement-neutral and non-categorical reimbursements to local 

agencies a requirement of state plans. 

 Set the agenda. The Federal government should leverage its 

influence to effect system change. Set the research agenda on 

unification and inclusion, evaluate the effectiveness of teacher 

education curricula to facilitate inclusion, and de-emphasize the 

labeling of "special education" teachers in personnel preparation 

efforts. Put teeth into the Federal monitoring process. Establish 

meaningful sanctions for non-compliance.
"People need to have control of their front door. " 

T.J. Monroe, Nashville, TN 

HOME 

PCMR Report Page 10 

PCMR 

recognizes the 

moral and 

legal rights of 

persons with 

mental 

retardation to 

experience and 

shape their 

lives as 

citizens and as 

individuals, 

including the 

most 

fundamental 

right -- to 

decide where 

and with whom 

they will live. 

Rare is the person with mental retardation who experiences 

"home" as do most Americans. Beyond the family home, the major 

housing alternatives are institutional and other group facilities, 

owned and controlled by others, with people they never chose to

live with. They are denied the experience of a "place of one's own"

-- an aspiration common to all Americans.

Owning or renting a home of their own choice (excluding 

those living in their family home) is currently limited to 8.4 percent of 

the 347,000 persons with mental retardation receiving services. For

the vast majority of people with mental 

Contemporary options are still largely limited to "homes" 

that are owned or leased by states, private organizations, foster care

programs, board and care providers, or non-profit housing

corporations. While we speak of dignity, rights, and inclusion, the

sobering fact is that most people with mental retardation living away 

from their family homes are under the control of other people. Basic 

models of care are predicated on dependence and the absence of

choice. 
PCMR Report Page 11 

retardation, housing and support services are bundled as 

"packages" based on group considerations and agency 

preferences rather than individual needs. The individual in need of

supports is often compelled to live in settings where the needed

services are provided or, conversely, to receive unnecessary care 

in exchange for residential support. 

Recognition of the consumer's right and capability of 

home ownership is not without basis in recent experience. 

People with mental retardation can and do own and rent their 

own homes all through the U.S. Though little used to date, this is

the most rapidly growing type of residential option. In localities

across the nation, innovative funding options are being implemented.

State governments, including Colorado, Connecticut, Florida,

Illinois, New Hampshire, Michigan, New York, Rhode Island, and 

Vermont, have developed innovative financial assistance programs

for cash assistance, leases, rent subsidies, and vouchers. 

David Guillet just purchased a condominium in 

Cumberland, Rhode Island. Formerly a resident of group 

homes, he, together with his parents, Marge and Lou, were 

pioneers in the development of home ownership options in the 

State. Through a collaborative effort of state agencies, they 

obtained a low-interest mortgage and a grant for the down 

payment, closing costs, and furniture. Compared to publiclyfunded group homes, often with service packages that are not 

needed and associated staffing expenses, home ownership may 
PCMR Report Page 12 

be less expensive. 

"My son has very severe disabilities," said Mrs. Guillet, 

"quadriplegic, legally blind, with severe seizures. Yet, I have the 

same fears for David as I do for my other children who do not 

have disabilities. We are helping David expand his relationships by

introducing David to the fire department, to his immediate neighbors,

by holding an open house. The neighbors were wary, assuming the 

State had purchased the condo. Their perceptions immediately 

changed when they found out that David was the owner, not

some "ward" of the State. 

"We have choices now. We pick the support staff. David

has complete control of the choices in his life. David can eat what

he wants to eat, when he wants to eat. If he wants to wear a blue

shirt with green shorts, that's OK. I can see the difference in his

eyes." 

The great challenge is to see beyond current service 

paradigms. Many people with mental retardation who receive 

residential services live in housing in which services and 

personal assistance are developed around group considerations and

agency preferences rather than individual needs and choices. People

with mental retardation are often wrongly viewed by government 

agencies and service providers as needing "special housing," rather

than as individuals with idiosyncratic needs for support. 
PCMR Report Page 13 

Changes in Federal policy will be crucial to the 

development of consumer-controlled housing. The Federal 

Government has considerable leverage through its housing 

programs, income support policies, and public information 

efforts. Through modifications of these programs, the Federal 

Government can play an affirmative, leading role in housing 

reform for people with mental retardation. 

PCMR RECOMMENDATIONS: 

OUR HOMES 

Twenty-seven years after the onset of

deinstitutionalization in 1967, we continue to house an 

unconscionably large number of American citizens in large noninclusive settings. Residential housing and financing models 

across the range of residential options remain largely predicated on

institutional concepts of care and training. We recommend that

the Federal Government should affirm the principles of choice

and control in housing policy for people with mental retardation. 

THE FEDERAL GOVERNMENT MUST AFFIRM THE PRINCIPLES 

OF CHOICE AND CONTROL 

• Separate housing from supports. People should have stable 

homes while fully exercising their right to choose the agencies and 

individuals who enter those homes to provide supports. Federal and 
PCMR Report Page 14 

local policy should affirm the separation in all programs specifically 

funding services or housing. 

 Speak with a vision. Develop a broad-based inter-agency approach 

to housing. Unify and coordinate Federal efforts to affirm the 

principles of choice and control. This can be achieved through: (1) a

coordinated initiative on personal housing through the Departments of

Health and Human Services and Housing and Urban Development; (2) a

modification the Federal commitment of HUD Section 8 rental

assistance to include mortgage assistance; and (3) fiscal support of

public information programs -- change will be facilitated at the local 

level when consumers, family members, and advocates know what 

options are available. 

 Act on a vision. Establish consistent housing policies across 

Federal agencies. The Federal Government can directly facilitate 

choice and control through modification of existing policy: (1) by 

permitting recipients of Disabled Adult Child (DAC) or Social 

Security Disability Insurance (SSDI) benefits (without Supplemental 

Security Income or SSI) who are eligible for Home and Community 

Based Services to retain their full DAC or SSDI benefits while 

receiving waiver services; (2) by permitting people in means-tested 

programs to save towards home down payments or apartment 

deposits; (3) by allowing waiver funds to be applied to supplemental 

housing costs where SSI and available state supplements fall below 

standards; and (4) by increasing the size and flexibility of housing 

subsidy programs for impoverished persons with mental retardation. 
• Encourage states to do what they do best -- innovate. Fund, 

support, and develop systems change projects. Experimentation is a 

hallmark of state systems; facilitate the transition from facility-based 

care to supported community living through fiscal assistance 

projects, and collaborative efforts with private financing agencies. 

WORK

"Work in a sheltered workshop and make money -- like 79 cents 

every 2 weeks." 

Tia Nelis, Illinois

In its 1967 Report to the President, PCMR estimated that 

the potential annual earnings lost because of unnecessary 

unemployment among persons with mental retardation ran into the

billions of dollars. 

The 1983 PCMR report concluded, "...there are 

hundreds of thousands of mentally retarded people who are 

employable but are unemployed because of misconceptions ...." 

The report asked us to raise our expectations. 

Today, after a decade of raised expectations, we can 

point to years of achievement, of research, and of model 

demonstrations in communities across the nation. Persons with 

mental retardation have affirmed over and over again PCMR's 

PCMR Report Page 15 
PCMR Report Page 16 

central belief in their capacity to be productive workers. Tens of 

thousands have participated in innovative employment programs

in real work settings. The Federal Government has infused the

principle of equal work opportunity in every piece of disabilityrelated Federal legislation since 1973. Above all else, the decade 

of demonstration has raised our expectations. 

Yet the contemporary employment status of Americans 

with mental retardation is one of underachievement. A decade 

after we proclaimed a "decade of progress" in the 1983 report, 

unemployment rates among adults with mental retardation 

exceed 70 percent. Why should this be? Why is unemployment 

such an intractable problem given what we know -- that 

thousands of persons considered unemployable years ago are 

now working in real jobs in real work settings?

The weight of Federal and state funding remains largely 

devoted to segregated services -- 80 cents of every state dollar 

reimburses segregated rehabilitation services; 90 cents of every 

Federal dollar support segregated services. While research 

clearly demonstrates the efficacy of integrated employment, state 

service systems remain deeply entrenched in segregated models 

of rehabilitation. Integration in employment is made more 

difficult by inconsistent Federal regulatory policies, some of 

which restrict the opportunity for real employment. Work

incentive reforms, for example, recently enacted for 

supplemental security income beneficiaries do not apply to 

SSDI and disabled adult child (DAC) recipients with mental
Despite legislative intent, systems of employment 

training remain bound to funded "slots" into which people must fit.

Given the bias of the system, the alternatives, if they exist, are

limited. Seven out of 10 persons served in rehabilitation programs

are either in separate or non-work day activity type settings. We

must personalize supports, let consumers control funds to direct

their own programs, and select the types of supports needed. We

must create the options so that choices are available.

The goal of real employment and equal opportunity 

seems almost as distant today as in 1967 or 1983. Though we now

know the vision can be realized in practice, the challenge is to

make it a reality for more than a select few. Large entrenched

systems do not change so readily. We recommend support for 

greater economic independence for persons with mental

retardation. 

retardation. For these individuals, employment endangers 

benefits, even at poverty level wages. In the absence of 

transitional support, entry into the world of work is fraught with 

personal risk. 

PCMR Report Page 17 

Seventy percent 

of persons 

served in day 

and 

employment 

programs are 

served in 

segregated 

programs; 90 

cents of every 

Federal dollar 

supports these 

segregated 

services. 
PCMR Report Page 18 

PCMR RECOMMENDATIONS: WORK 

Workers with mental retardation have repeatedly 

demonstrated their ability to be employed for decent wages with 

benefits. Like a distant beacon, competitive employment shines 

as brightly as ever, but across a sea of exclusion and 

unemployment. PCMR recommends bringing Federal 

regulatory and fiscal policies into line with Federal principles

and ending Federal support for exclusion in the work place. 

SUPPORT THE PRINCIPLES OF CONSUMER INVOLVEMENT, 

CHOICE, AND CONTROL WITH FEDERAL REGULATORY 

REFORMS.

 Bring Federal spending into line with Federal principles. 

Require the U.S. Department of Education's Rehabilitation Services 

Administration (RSA) funding (including Section 110 funds and the

required state match) to be employed in support of integrated

employment; change financial controls so that consumers exert 

control over expenditures. Use RSA leverage to modify state 

agency goals. 

 Make the system accountable. Monitor the implementation of the 

Rehabilitation Act Amendments to assure that consumers are offered 

services in real work settings and involve them in all stages of 

program planning. Ensure the adherence of state and local school 

systems to the employment goals of The Individuals with 

Disabilities Education Act. 
PCMR Report Page 19 

 Build capacity. Choice requires options. Use Federal

demonstration funds to stimulate innovations in achieving integrated 

employment and support replication projects. Ensure the 

participation of youths with mental retardation in the

Administration's school-to-work transition initiatives. 

 Establish consistent policy across agencies. Remove limitations 

on the use of Medicaid for integrated employment; ensure 

involvement of persons with mental retardation in the many 

employment and economic development initiatives of the Federal 

government. 

III. THE DIGNITY OF OUR CITIZENS: 

HEALTH, WELFARE, AND LONG-TERM 

CARE 

In the journey of national renewal we must give priority to

reforming those systems that contradict fundamental American

values of equality and self-determination. The Clinton

Administration has elevated these contradictions to the center of the

national debate in health, welfare, and long-term care. How these

debates are resolved will be critical to the security of America's

citizens, in particular those with mental retardation. 

Health care reform is a principal priority of PCMR. 

Americans with mental retardation and their families are 

especially vulnerable to the effects of discrimination in the 

health care system. Our struggle will not end until universal 

coverage is achieved. We concur with the President that "...the 
PCMR Report Page 20 

human cost far outweighs the risk of responsible change." 

Welfare serves many purposes. Above all else, it must 

support self-sufficiency, productivity, family, and those who 

cannot care for themselves. Americans with mental retardation are 

disproportionately affected by pervasive and long-term poverty, 

unemployment, or long-term dependency. They have very much to

gain and very much to lose in the outcomes of the nation's welfare

reform. We must be sure that the interests of people with

mental retardation and their families are not lost in the

clamor for change. 

Long-term care is a critical ingredient of a 

comprehensive domestic agenda. The long-term care agenda 

recommended by PCMR is likewise a critical element in any 

effort to provide a secure future for people with mental 

retardation and their families. The domestic reform agenda is 

incomplete without a guarantee of home and communitybased long-term supports.

The outcomes of domestic reforms are critical to the 

well-being and dignity of all Americans. PCMR requests that the

needs and the special vulnerability of Americans with mental 

retardation not be overlooked in the pending reforms.
PCMR Report Page 21 

HEALTH 

"No band-aids, real health care reform for all." 

Health care reform campaign button

"Seven years ago when Robert was 2 1/2 years old, he 

started having epileptic seizures. Due to the seizures, Robert is 

mentally retarded and at times unable to walk or talk. At the 

time he first became ill, Tom was a first year apprentice with 

the Sheet Metal Workers Union. Our insurance coverage was 

80 percent with 20 percent to be paid by the member. During

that period we accrued several tens of thousands of dollars 

worth of medical bills. As we were a struggling, young twoincome family making $20,000 per year, we applied for 

assistance, only to be denied -- because we were, "just over the

maximum income allowed." After six months the insurance 

company stopped paying for a nurse to help with Rob. I was 

forced to quit working. We sold the house and took all the 

equity to pay off the medical bills. The move required Tom to 

spend four hours on the road each day going to and from work. 

Robert's illness made him uninsurable because he now had a 

"preexisting condition," and we became all too aware of how 

important it was for Tom to keep his job. After the move more

admissions followed, and again the bills started mounting. It

was at that time we were told to apply for Children's Medical 

Services. If it were not for this organization we would have 
PCMR Report Page 22

A moral 

imperative 

is nonnegotiable. 

PCMR 

believes 

that health 

care is a 

basic 

Kate Miles, Maryland

"I informed them that I would not even consider putting Rob 

in an institution, and that he would not thrive without the love of his

family nor would we. In an institution no one is going to get up 

during the night, while he is having seizures, and let him know 

that it's "ok" and that mom loves him. No one in an institution

could ever give him the love that we give him at home. This is why 

we so desperately need health care reform. What has happened to

us and many other families like ours is wrong." 

been homeless. In October of 1992 our renewal came due and we

were denied services based on our income being in excess of the 

$22,000 per year maximum. Last year Tom's company was forced to

cut back to a 4-day work week. Due to Robert's preexisting condition 

Tom is locked into his job, even if his employer cuts him back to a 3-

day work week. The problems are never ending. Two years ago 

while lifting Rob, I hurt my back. The injury has left me bedridden 

and unable to care for Robert many times since. It was one of these 

times I contacted the local agencies, to get some help taking care of 

Rob in our home. I was told that if he was on Medical assistance they 

could send an aide, but because he was ineligible, all they could offer 

was to institutionalize him.

Americans with mental retardation and their families are 

painfully aware of the health care crisis. Their needs are a 

microcosm of the national crisis. Their voices are part of a 
PCMR Report Page 23 

larger chorus of Americans with disabilities and their families and

of the tens of millions of other citizens with no coverage or

inadequate and inferior care in the world's most advanced 

nation. PCMR's position has an essential predicate -- that 

health care is a basic right of all Americans. We support your

courageous effort to "undertake this journey of change" towards a 

just and equitable health care system for all. 

Like other Americans, persons with mental retardation are 

remarkably diverse in their health care needs. They cannot be 

treated as a single constituency. Most have the same basic needs 

as everyone else. But they have a special vulnerability which is 

the legacy of discrimination, unemployment, and poverty. Many 

adults with mental retardation are often disqualified for Medicaid

because their disability is not "severe" or because they are too

proud to apply, yet the jobs they can find are usually marginal

or part time. As a result they are without the continuity of health 

care that they particularly need. For these individuals and their

families there is a crisis of coverage.

For others, there are complex medical problems and 

significant health care needs. These individuals have disorders 

associated with rare or low incidence syndromes, or challenging 

behavior problems requiring health care professionals with 

specialized training. Meeting their needs has been complicated by 

shifts in models of care. Those most severely impaired are now

living longer because of medical advances and their 
PCMR Report Page 24 

numbers are increasing because of improved health care during 

infancy and childhood. The locus of health care services for 

this population is in the community. But there is a severe 

shortage of providers with even the rudimentary expertise in 

working with individuals with mental retardation. For these 

individuals, there is a crisis of care in the community. 

What do Americans with mental retardation need?

Policies affirming guaranteed health coverage that directly 

address the inequities and arbitrariness of the current care 

system: universal coverage, limits on out-of-pocket expenses, 

access to specialists, elimination of work disincentives, and 

home and community-based long-term services, including 

personal assistance services. 

PCMR RECOMMENDATIONS: 

HEALTH 

For Americans with mental retardation, there is a dual 

health care crisis -- shrinking coverage and a dearth of skilled 

practitioners in the community. Both must be addressed. The 

following recommendations address universal coverage, service 

delivery, and financing. 

Like all journeys into uncharted regions, the nation's 

passage will be marked by false starts, unexpected turns, and

illusory conclusions. For persons with mental retardation and
PCMR Report Page 25 

their families, the endpoint of the health care reform battle is clearly

marked. 

TRUE HEALTH CARE REFORM MUST INCLUDE UNIVERSAL 

AND COMPREHENSIVE COVERAGE 

 Do not discriminate. People with mental retardation must be able 

to participate fully in the nation's health care system, regardless of age,

health, disability status, or income. Permit no exclusions based on 

pre-existing conditions.

 Be comprehensive. People with mental retardation must have access

to a health care system that ensures a comprehensive array of health,

rehabilitation, personal, and support services across all service categories

and sites of service delivery. Provide access to specialists and other 

providers. 

 Serve the person not the system. Ensure the appropriateness of 

health services. People with mental retardation and their families must be

assured that comprehensive health, rehabilitation, personal, and support 

services are provided on the basis of individual need, preference, and choice.

Allow meaningful consumer involvement, accountability, and

provision of home and community-based long-term care.

 Be equitable. People with mental retardation and their families 

must be assured equitable participation in the nation's health care system and

not be burdened with disproportionate costs. There cannot be financial 

disincentives for serving people with more intensive needs for health

services and other supports. Limit out- of-pocket costs and eliminate

lifetime caps on benefits. 
PCMR Report Page 26 

 Be efficient. People with mental retardation and their families must 

have access to a health care system that provides a maximum of 

appropriate, effective services that includes effective cost controls as 

well as a minimum of administrative waste. Remove work 

disincentives in health coverage policies.

 Do not exclude. True health care reform must integrate, not

segregate, health services for persons with mental retardation. In the

reform of the nation's health care systems, we must vigilantly adhere 

to the intent of the Americans with Disabilities Act. Ensure equal

access. Policies and procedures may not, by design or impact, deny

individuals with mental retardation health services by reason of their

disability. Rationing, or denial of coverage, or unintended 

discriminatory effects of neutral policies are violations of the intent of 

the law. 

 Build capability. Prepare service providers and service consumers. 

Health care providers, including family physicians, need 

knowledge, experience, and models. Much exclusion occurs not 

because of lack of skills but because of lack of experience. 

Similarly, persons with mental retardation and their families must be 

made aware of their options and rights. 

 Build capacity. High quality primary care must be available to all, at

all ages. Home health care services must be available. 

 Do not eliminate options currently available. Referral to 

specialist care must be an option within the generic system. For 

people with atypical medical needs, "comprehensive" services must 

include referral to the most relevant specialists. 
PCMR Report Page 27 

 

WELFARE 

"It defies our values as a nation." 

President Clinton's 1994 State of the Union Address

Welfare in its present form presents a challenge for 

persons with mental retardation -- economic self-sufficiency, 

equal opportunity, family support, and above all the dignity and 

respect that come with being a contributing and productive 

citizen. The welfare system has personal assets limitations that 

discourage savings towards future needs. There is a penalty on 

parents, brothers, sisters, and other family who assume the 

responsibility of care, even when few viable alternatives exist. 

Support based on total dependency serves to discourage 

integration into the work force. PCMR believes an effective 

system of social welfare should promote the independence of 

people and reduce their long-term dependence over time. Let 

people work and save and encourage family support. 

Persons with mental retardation are participants in the 

full range of social insurance programs -- as workers 

contributing taxes to Social Security, as dependents and 

survivors entitled to draw on the Old Age, Survivors, and 

Disability Insurance (OASDI) and Social Security Disability 

Insurance (SSDI) Trust Funds, and as recipients of means-tested 

income assistance. It is on behalf of those who are most 

economically vulnerable that PCMR addresses its concerns and 

recommendations. 
PCMR is concerned about the outcomes for persons with 

mental retardation and their families in the current welfare 

reform debate. While changes are needed, it is important to 

consider carefully how any modifications will affect those for 

whom work mandates are inappropriate. For recipients with 

mental retardation there is a narrow line between the objectives of 

welfare reform and unintended neglect. Federal data indicate a

rate of functional disabilities among women in the AFDC 

There is a 

fine line 

between 

reform and 

neglect; in 

our reforms 

we must do 

no harm to 

those most 

vulnerable. 

Two pillars of Federal poverty-related income assistance to

persons with mental retardation are the Supplemental Security Income

(SSI) program and the Aid to Families with Dependent Children

(AFDC). PCMR supports the Administration's scrutiny of

AFDC; we urge you to also include changes in the SSI program in 

the larger welfare reform agenda. SSI plays a central role in the 

modern configuration of mental retardation services. Benefits

now reach more than 700,000 Americans with mental retardation

under 65 years of age. Contradictions between social goals and 

statutory regulations within SSI have long been the object of 

criticism. The SSI Modernization Panel noted several problems:

regulations that discourage personal savings, the harshness of inkind support penalties on family care, and earned income 

exclusions that make the transition from welfare to work

extraordinarily difficult for potential wage earners with mental

retardation. We strongly support the recommendations of the SSI

Modernization Project Panel: bring Federal benefit standards in line

with our national goals. 

PCMR Report Page 28
population to be in the 20 percent range. In addition, some 19 

percent of households receiving AFDC benefits have another

disabled adult or child present. Of the total AFDC enrollment of

14.1 million, an unknown but potentially large number have mental

retardation. In short, many AFDC recipients, children as well as 

adults, have disabilities and are truly dependent. 

In total numbers and potential impact, Americans with 

mental retardation have a significant stake in the course of 

welfare reform. In our effort to correct the wrongs of the 

system, we must not forget those most vulnerable. Do no harm. 

We urge sensitivity to the unique needs of welfare recipients 

with mental retardation. 

PCMR RECOMMENDATIONS: 

WELFARE 

PCMR believes that an effective social welfare system is 

an investment in human capital. The central reform issue is the 

use of welfare for the realization of potential. We concur with the

Administration that the central objective of welfare reform is to

bring today's systems of support into congruence with core 

American values. 

PCMR Report Page 29 
PCMR Report Page 30 

ENGAGE FEDERAL POLICY TO SUPPORT THOSE GOALS MOST 

VALUED BY AMERICANS WITH MENTAL RETARDATION: 

SELF-SUFFICIENCY, OPPORTUNITY, FAMILY, AND PERSONAL 

DIGNITY 

 Encourage savings and self-sufficiency. Increase the assets 

limits under SSI to encourage savings and security; end the 

practice of penalizing trivial assets such as interest on bank 

accounts; allow savings for special purposes. 

 Support the family. Eliminate the penalty for "in-kind 

support and maintenance" provided by families caring for 

their adult sons and daughters with mental retardation. 

 Stop punishing those with mental retardation who want to

work. Income support must not be predicated on total 

dependency; extend the Earned Income Tax Credit to 

households without children. 

 Leverage existing jobs programs. There are effective 

existing Federal employment programs that could benefit

persons with mental retardation; expand their programmatic 

focus. 

Welfare reform should not forget those who are most vulnerable. We

conclude by again underscoring the importance of anticipating any negative 

consequences of welfare reform proposals for people with mental retardation 

and their families: mothers, children of single parents, those unable to enter 

the work force, and older adults. Reform must work for all Americans. 
PCMR Report Page 31 

LONG-TERM CARE 

Disability is a natural dimension of the human condition. It 

can touch any life at any time and for many Americans it is 

manifested as a lifelong need for support. Among this group are

significant numbers of Americans with mental retardation. While

the composition and character of long term care is in a state of

continuous evolution, we can address the basic features that

impact most significantly on persons with mental retardation.

The existing Federal supports for long term care services for

Americans generally have been characterized as a $70 billion system 

that is fragmented and ill-matched to the needs of current recipients.

It has a medical bias that results in persons going 

without services or receiving more intensive services than 

necessary. These critiques are no less valid when applied to the 

long-term care needs of persons with mental retardation and their

families. 

What Americans with mental retardation and their

families desire is both more and less than the current system

delivers, derived as it is from its institutional precursor. The

agenda in long-term care is both a composite and a constituent part 

of the reform debates on employment, health care, housing, 
To understand the texture of the contemporary long-term care 

system for Americans with mental retardation one must understand its 

historical antecedents in the state-operated institutional care system. 

Over two decades ago Federal Medicaid dollars were used to finance 

improvements in the state institutions and to create additional capacity 

in the private sector. Beginning with the Home and Community Based 

Services (HCBS) waiver in 1981, diversion of Medicaid funds was

authorized for community placements of individuals who might

otherwise have qualified for an Intermediate Care

Facility-Mental Retardation (ICF-MR) bed. Thus it was through the

open-ended Medicaid ICF-MR program that states expanded longterm residential alternatives outside of the traditional state- operated

institutional system. 

We must be cognizant of the enormity of the Medicaid 

program in the lives of persons with mental retardation. Revisions 

in policy will dramatically affect the character of services. 

Medicaid ICF-MR and Home and Community-Based Services

funds represent the single largest Federal services program in the

field. For over 20 years, its institutional component has grown 

dramatically. Because of its size and institutional origins,

Medicaid is both bulwark and bane to longterm care. The funds

are a cornerstone of funding in the field. 

We must be

cognizant of the

role that 

Medicaid plays 

in the support of 

Americans with 

mental 

retardation. 

Realize also that

it has been both 

a bane and 

bulwark. 

and welfare. What is desired of long-term care is an extension of

what is needed generally from our reform efforts -- greater 

independence, choice, dignity, and inclusion. 

PCMR Report Page 32 
PCMR Report Page 33 

When matched with mandated state and local funds, Medicaid 

accounts for 52 percent of all financial resources for mental 

retardation services nationally. Nevertheless, for all the Federal 

legislative and administrative language expressing commitment to

independence and inclusion in the community, only 1.5 percent

of this enormous annual Federal investment is used for 

individualized supports for people with mental retardation. 

Needs for long-term care are significant and will grow 

through the decade. Waiting lists for placements into residential 

facilities are estimated in excess of 78,000. There are also over 

40,000 nursing home residents with mental retardation; many 

will require transfer to more appropriate settings. There is a 

large population of adults supported at home with aging parents

increasingly unable to provide care. Finally, there are those 

228,000 persons in state institutions and other congregate 

facilities with over 6 beds for whom more individualized 

supports are required. 

Our concerns in long-term care are mirrored in our 

recommendations for housing. Despite the contraction of the 

institutional network, and despite the dramatic growth of 

individualized supports in the community, the non-inclusive 

character of the nation's residential services for persons with 

mental retardation remains fundamentally unchanged. Ending 

this segregation is our first priority. We must realign the 

nation's fiscal commitments to bring this about. Federal 

funding policies must be modified to eliminate fiscal incentives 
that encourage development of more institution-like care in 

separated facilities of all sizes. We must bring coherence to 

long-term care; it must be predicated on the individual not the

facility, on personal needs and not professional guilds, on 

consumer choice rather than service "slots." 

PCMR underscores again the interconnectedness of the 

domestic agenda for Americans with mental retardation. Health

housing, and welfare reform will not be complete until the longterm

care needs are systematically and comprehensively accounted 

for. 

PCMR RECOMMENDATIONS: 

LONG-TERM CARE 

The long-term care agenda for persons with mental 

retardation is inextricably linked to our reform recommendations in

health, housing, welfare, and work. Each is a critical component

to long-term care. What is presented below is not a recitation of

new and additional services but rather a 

recommendation for a coherent approach to long-term supports 

based on the President's call for "People First." 

COMMIT FEDERAL POLICY TO THE PRINCIPLES OF 

INDEPENDENCE AND COMMUNITY LIFE 

• Permit the states to innovate. Federal commitments to 

institutional services spending through Medicaid ICF-MR are 

PCMR Report Page 34 
PCMR Report Page 35 

enormous, yet we continue to cap the level of Medicaid benefits 

available for serving people in their own homes. Make the 

Medicaid Home and Community Based Services a full Medicaid

option. Regularly provide residents of ICFs-MR the option to use 

the Medicaid HCBS Waiver. Permit Medicaid Waiver funds to be 

used to supplement housing costs. 

 Provide universal access to individualized long-term care 

supports through social insurance. Provide reasonable cost

sharing through modest deductibles and co-insurance; uphold

personal dignity and self-direction; minimize dislocation; provide

only that which is specifically appropriate to the individual; avoid 

forced impoverishment. 

 Put people first. Long-term services must commit to a non-facility 

based model of care; address the needs of the individual and break 

free of the "continuum" of care funding options. 

IV. EPILOGUE: PUTTING PEOPLE FIRST 

The contours of mental retardation in America changed 

significantly in the 27 years since MR 67. Yet inequities 

remain, and basic paradigms of care are unchanged. PCMR's

recommendations are a challenge to these old assumptions. 

Our recommendations must be viewed as mere threads in
PCMR Report Page 36 

the larger fabric of an individual's experience. Reform is more 

than the identification of "optimal" services; what we do cannot be 

disentangled from the meanings, experiences, and aspirations of 

the individuals that all these systems of supports are intended to

serve. The essence of reform in the field of mental

retardation lies in an abiding respect for the person. We are

talking about constituents, not clients; citizens rather than 

recipients -- let us not lose sight of the person in the policy. 

"We went to a forest preserve one weekend," recalled 

Linda Preston. "A group of young adults had an impromptu 

concert with bongos, drums, and other instruments. We went 

over to listen. One of them gave Elisha some maracas. And for 

the next hour, Elisha was just one of the band, making music,

dancing and keeping the beat. They didn't see his disabilities. 

They just saw the music in him." 

This is the crossroad. In our journey of national renewal,

we must choose to challenge the old assumptions. We must move

the nation towards a vision that accords a basic dignity to all its

citizens. Let America's fundamental nobility be reflected in the

lives of those like Elisha Preston, Katie Charlton, David Guillet, 

and Robert Miles. Their passage is a journey we will all share. 
*Lorenzo H. Aguilar-Melancon 

5822 Cromo, Suite 320 

El Paso, Texas 79912 

Ph: (915) 584-5535 

Kenneth L. Barun 

Ronald McDonald Children's Charities 

Kroc Drive 

Oak Book, Illinois 60521 

Ph: (708) 575-5505 

*Valerie J. Bradley, President 

Human Services Research Institute 

2336 Massachusetts Avenue

Cambridge, Massachusetts 02140 

Ph: (617) 876-0426 

Robert E. Brown 

P.O. Box 462 

Put-ln-Bay, Ohio 43456 

Ph: (419) 285-3500 

*Jane Browning

Director of Community Services 

The Arc of Maryland, Inc. 

6810 Deerpath Road, Suite 310

Baltimore, Maryland 21227

Ph: (410) 379-0400 

*Robert D. Dinerstein

The American University

Washington College of Law

4400 Massachusetts Avenue, N.W. 

Washington, D.C. 20016 

Ph: (202) 885-1515 

Linda Feiner

1 Well House Close 

Mamaroneck, New York 10543 

Ph: (914) 698-4403 

A-1

*Ann M. Forts 

P.O. Box 644 

Center Harbor, New Hampshire 03226

Ph: (603) 253-6722 

*Gisselle Acevedo Franco 

Bilingual Advocate 

California Protection and Advocacy, Inc.

221 E. Glen Oaks Boulevard, Suite 220 

Glendale, California 91202 

Ph: (818) 546-1631 

Marcia Frey 

139 Genius Drive 

Winter Park, Florida 32789 

Ph: (407) 628-4139 

Thomas Cunnings, Ph.D. 

2614 Cochise 

Okemos, Michigan 48864

Ph: (517) 332-0811 

*Ruth Luckasson, J.D. 

Regents Professor and Professor of Special Education 

University of New Mexico 

Albuquerque, New Mexico 87131 

Ph: (505) 277-7231 

*T.J. Monroe 

Middle Tennessee Self-Advocacy Coordinator 

People First of Tennessee

P.O. Box 121211 

Nashville, Tennessee 37212-1211 

Ph: (615) 297-2734 

Betty B. Osman, Ph.D. 

White Plains Hospital Medical Center

Department of Psychiatry 

Davis Avenue at East Post Road

White Plains, New York 10601 

Ph: (914) 723-4397 

Ph: (914) 681-1078 

Appendix A 

PCMR Citizen and Ex Officio Members and Staff 

The Honorable Donna E Shalala, Chair, President's Committee

on Mental Retardation

Secretary, U.S. Department of Health and Human Services 

Washington, D.C.

Valerie J. Bradley, Vice Chair, President's Committee 

on Mental Retardation

President, Human Services Research Institute 

Cambridge, Massachusetts
*Elizabeth Pittinger Regional

Director Step by Step, Inc.

1216-1218 Grandview Avenue

Pittsburgh, Pennsylvania 15211

Ph: (412) 381-3800 

*Michael Remus 

Director of Student Services

Educational Service Unit #7

2657 44th Avenue 

Columbus, Nebraska 68601 

Ph: (402) 564 0815 

*Tom R.C. Smith Associate

Professor Department of Teacher

Education 

University of Arkansas at Little Rock

Little Rock, Arkansas 72204

Ph: (501) 569-3016 

*Deborah M. Spitalnik, Ph.D. 

Executive Director

The University Affiliated Program of New Jersey 

Brookwood II, 2nd Floor 

45 Knightsbridge Road 

P.O. Box 6810 

Piscataway, New Jersey 08855-6810 

Ph: (908) 235-4447 

*Cathy Ficker Terrill 

Vice President, Quality and Strategic Planning

Ray Graham Association for People With Disabilities 

340 W. Butterfield, Suite 3C

Elmhurst, Illinois 60126 

Ph: (708) 530-4554 

E. Duane Thompson 

205 Oakwood 

Geneva, Illinois 60134 

Ph: (708) 844-5040 

*Virginia J. Williams

Senior Advisor 

Georgetown University 

Child Development Center 

3307 M. Street, N.W., 4th Floor

Washington, D.C. 20007 

Ph: (202) 687-8635 

**The Honorable Janet F. Reno 

Attorney General 

US. Department of Justice 

Constitution Avenue and 10th St., N.W. 

Washington, D.C. 20530-0001

Ph: (202) 514-2001 

**The Honorable Henry Cisneros

Secretary of Housing and Urban Development 

US. Department of Housing and Urban 

Development 

451 7th Street, S.W. 

Washington, D.C. 20410-0001

Ph: (202) 708-0417 

**Eli J. Segal 

President and CEO 

Corporation for National and Community Service 

1100 Vermont Avenue, N.W., Room 6100 

Washington, D.C. 20525 

Ph: (202) 606-5000 

**The Honorable Richard W. Riley 

Secretary of Education 

U S. Department of Education 

400 Maryland Avenue, S.W. 

Washington, D.C. 20202-0001 

Ph: (202) 401-3000 

** The Honorable Robert B. Reich 

Secretary of Labor 

U.S. Department of Labor 

200 Constitution Avenue, N.W. 

Washington, D.C. 20210 

Ph: (202) 219-8271 

* denotes Appointed 1994 

** denotes Ex Officio Members

Gary H. Blumenthal, 

Executive Director

John L. Pride, 

Deputy Executive Director

George N. Bouthilet, Ph.D., 

Full Citizenship and Justice Coordinator 

Ashot P.Mnatzakanian, 

Family and Community Support Coordinator

Laverdia T. Roach, 

Prevention Coordinator

Bena L. Smith, 

Public Awareness Coordinator 

Fred J. Krause, 

Special Assistant to the Executive Director 

Peggy A. Butler, 

Secretary to the Executive Director 

Rosa M. Singletary, 

Program Assistant 

Angie D. Green, 

Clerk-Typist 

Terry A. Lion, 

Clerk-Typist 
Appendix B 

PCMR Advisory Planning Committee

William E. Jones, Ph.D., Chairperson David M. Mank, Ph.D. 

Executive Director Associate Professor 

Specialist Training Program 

1235 University of Oregon

Eugene, Oregon 97403-1235

Ph: (503) 346-2477 

American Association of University 

Affiliated Programs 

8630 Fenton Street - Suite 410

Silver Spring, Maryland 20910

Ph: (301) 588-8252 Fax: (503) 346-5517 

Kathy Beyer Paul Marchand

People First of Northern Virginia Chairperson 

100 N. Washington Street - Suite 234 

Falls Church, Virginia 22046

Consortium for Citizens with Disabilities 

1522 K Street, N.W. - Suite 516 

Ph: (703) 532-3214 Washington, D.C. 20005 

Ph: (202) 785-3388 

David Braddock, Ph.D. 

Professor, Institute on Disability and Human 

Development 

Jan Nisbet, Ph.D. 

Director 

The University of Illinois at Chicago Institute on Disability 

University of New Hampshire 

UNH 312 Morrill Hall 

1640 West Roosevelt Road 

Chicago, Illinois 60608 

Ph: (312) 413-1647 62 College Road

Durham, New Hampshire 03824 

Sharon Davis, Ph.D. Ph: (603) 862-4320 

The Arc - National Headquarters

500 East Border - Suite 300 Frank R. Rusch, Ph.D. 

Arlington, Texas 76010 Director and Professor 

Ph: (817) 261-6003 Secondary Transition Intervention Effectiveness

Institute 

Steve Eidelman College of Education 

Executive Director University of Illinois at Urbana Champaign 

110 Education Building 

1310 South Sixth Street 

Champaign, Illinois 61820 

Ph: (217) 333-2325 

Joseph P. Kennedy, Jr. Foundation

1350 New York Avenue, N.W. 

Suite 500 

Washington, D.C. 20005-4709 

Ph: (202) 393-1250 

Marsha Mailick Seltzer, Ph.D. 

Matthew P. Janicki, Ph.D. Professor 

Director Waisman Center 

University of Wisconsin—Madison 

1500 Highland Avenue 

Aging Services for the New York State Office of 

Mental Retardation and Developmental Disabilities 

44 Holland Avenue Madison, Wisconsin 53705-2280

Albany, New York 12229-0001 Ph: (608) 263-7878 

Ph: (518) 473-7855 Fax: (608) 262-8848 

Fax: (518) 473-9695 

Steven Taylor, Ph.D. 

K. Charles Lakin, Ph.D. Director 

Director for Research and Dissemination 

Minnesota University Affiliated Programs on 

Developmental Disabilities

The Center on Human Policy

School of Education Syracuse

University 200 Huntington

Hall Syracuse, New York, 13244-

2340 

University of Minnesota 

6 Pattee Hall

Minn Ph: (315) 443-3851 eapolis, Minnesota 55455 

Ph: (612) 624-5005 
Paul Wehman, Ph.D.

Director 

Rehabilitation Research and Training Center 

School of Education 

Virginia Commonwealth University

Richmond, Virginia 23284-0001

Ph: (804) 367-1851 

Alexander J. Tymchuk, Ph.D.

Associate Professor and Director of the Parenting 

Project 

UCLA Neuropsychiatric Institute and Hospital

760 Westwood Plaza 

Los Angeles, California 90024-1759 

Ph: (310) 825-0026