DEPARTMENT OF HEALTH AND HUMAN SERVICES 

Office of Human Development Services 

President's Committee on Mental Retardation 

A Presidential Forum: 

Citizens with Mental Retardation and 

Community Integration 

 

Forum Proceedings 

February 3-5, 1989 

Washington, DC 
The President's Committee on Mental Retardation acknowledges and extends 

appreciation to the following organizations, agencies and private individuals 

for their financial co-sponsorship of the national conference, "A 

Presidential Forum: Citizens with Mental Retardation and Community 

Integration:" 

ACTION 

American Association of University Affiliated Programs 

for Persons with Developmental Disabilities 

American Foundation on Mental Deficiency American Nurses' 

Association, Inc. Carter, Hawley, Hale Stores, Inc. 

United States Department of Education 

Office of Special Education and Rehabilitative Services 

United States Department of Health and Human Services 

Administration for Children, Youth and Families 

Administration on Developmental Disabilities 

Health Resources and Services Administration 

Bureau of Maternal and Child Health and Resources Development 

National Institute of Child Health and Human Development 

Social Security Administration 

Fairview Families and Friends, Inc. 

Goodwill Industries of America, Inc. 

Miriam and Peter Haas Fund 

Maine Department of Mental Health and Mental Retardation 

Marshall's Department Stores 

Minnesota University Affiliated Program/Center for 

Residential and Community Services 

National Association for the Dually Diagnosed 

National Council on the Handicapped 

National Foundation for the Handicapped 

WEMCO, Inc. 

Mrs. Jefferson Patterson of Washington, D.C. 
TABLE OF CONTENTS

 PAGE 

PREFACE ................................................................................................. 1 

Albert L Anderson, D.D.S. 

Vice Chairman 

President's Committee on Mental Retardation 

San Diego, California 

OPENING PLENARY SESSION 

February 3, 1988 

REMARKS ................................................................................................. 3 

Sydney Olson 

Deputy Assistant Secretary for 

Human Development Services (at time of Forum) 

Department of Health and Human Services 

Washington, D.C. 

OPENING STATEMENTS ........................................................................... 5 

Otis R. Bowen, M.D. 

Secretary 

Department of Health and Human Services 

and 

Chairperson 

President's Committee on Mental Retardation 

Washington, D.C. 

OVERVIEW OF THE PRESIDENT'S COMMITTEE ON MENTAL 

RETARDATION'S COMMUNITY INTEGRATION INITIATIVE .......................... 7 

Vivian B. Levin 

Executive Director 

President's Committee on Mental Retardation 

Washington, D.C. 

DRUG ABUSE, MENTAL RETARDATION AND COMMUNITY 

INTEGRATION ...........................................................................................8 

Donald Ian MacDonald, M.D. 

Special Assistant to President Reagan and 

Director, Drug Abuse Policy Office 

Washington, D.C. 

PUBLIC AWARENESS/PUBLIC ACCEPTANCE — 

ONE PARENT'S EXPERIENCES ............................................................................. 9 

Emily Perl Kingsley 

Writer, Sesame Street (PBS) 

Chappaqua, New York 

GENERAL FAMILY ROLE, FINANCING AND TRUST PLANNING IN 

COMMUNITY INTEGRATION — NOW AND THE FUTURE ........................ 14 

James H. DeOre 

Executive Director 

National Foundation for the Handicapped 

Elmhurst, Illinois 

ZONING, REAL ESTATE AND RELATED ISSUES ............................................ 23 

Arlene S. Kanter 

Staff Attorney 

Mental Health Law Project 

Washington, D.C. 

iii 
 PAGE 

FINANCING OF COMMUNITY INTEGRATION MODELS .............................. 30 

Vincent D. Pettinelli, ACSW, FAAMR 

President, VOCA Corporation 

Columbus, Ohio 

PROMOTING MAXIMUM COMMUNITY INTEGRATION THROUGH 

PEOPLE .........................................................................................................35 

Peter "Skip" Sajevic 

Vice President for Policy 

National Association of Private Residential 

Facilities for the Mentally Retarded 

St. Paul, Minnesota 

MANAGEMENT OF TRANSITION INTO THE COMMUNITY ....................... 38 

Marcia F. Hill 

Assistant Director of Developmental Services 

Florida Department of Health and 

Rehabilitative Services 

Tallahassee, Florida 

 PANEL SESSIONS 

LIVING ARRANGEMENTS PANEL FEBRUARY 4, 1988

COMMUNITY INTEGRATION FOR CHILDREN WITH SEVERE HANDICAPS? 

LET'S BE PRACTICAL! .............................................................................. 45 

Henry A. "Hank" Bersani, Jr., Ph.D. 

Assistant Professor 

Syracuse University 

Center on Human Policy 

Syracuse, New York 

AGAINST ALL ODDS: PARTNERSHIP FOR RESIDENTIAL DEVELOPMENT 49 

Janice C. Schiff 

Director 

Residential Development, Fairfax-Falls Church 

Community Services Board 

Vienna, Virginia 

IMPLICATIONS OF FEDERAIISTATE POLICY ................................................ 52 

Michael M. Morris 

Associate Executive Director 

Community Services Division 

United Cerebral Palsy Association, Inc. 

Washington, D.C. 

OPTIONS IN COMMUNITY LIVING ..................................................... 56 

Gail D. Jacob 

Program Director 

Options in Community Living, Inc. 

Madison, Wisconsin 

STRIVING FOR EXCELLENCE WHILE SHAPED BY HISTORY RESIDENTIAL 

PROGRAM FOR PERSONS WITH DEVELOPMENTAL NEEDS ......................... 59 

 Jean W. Powers 

Administrator 

Peppermint Ridge 

Corona, California 

iv 
EMPLOYMENT PANEL 

 PAGE 

PUBLIC/PRIVATE PARTNERSHIP WORKING TOGETHER TO PROVIDE 

EMPLOYMENT ................................................................................................65 

Donna D. Doerer 

Former Regional Director 

Association for Retarded Citizens/U.S. 

National Employment and Training Program 

Seattle, Washington 

SUPPORTED EMPLOYMENT WITHIN THE COMPETITIVE WORKPLACE ..............70 

 Kenneth J. Shaw 

Director 

Rehabilitation and Research 

Goodwill Industries of America, Inc. 

Bethesda, Maryland 

SOME INITIAL FINDINGS OF THE SOCIAL SECURITY ADMINIST'RATION'S 

TRANSITIONAL EMPLOYMENT (TE) TRAINING DEMONSTRATION ............ 79 

 Aaron J. Prero, Ph.D. 

Economist 

Department of Health and Human Services 

Social Security Administration 

Baltimore, Maryland 

UTILIZATION OF THE NATION'S "JOB TRAINING PARTNERSHIP ACT" 

PROGRAM .....................................................................................................85 

 Paul Hippolitus 

Acting Director 

The President's Committee on People with 

Disabilities (Formerly: The President's 

Committee on Employment of the Handicapped) 

and 

Ex Officio Member 

President's Committee on Mental Retardation 

Washington, D.C. 

TRANSPORTATION PANEL 

TRANSPORTATION CONSIDERATIONS FOR CITIZENS WITH MENTAL 

RETARDATION .............................................................................................. 95 

Paul A. Marchand 

Director, 

Office for Governmental Affairs 

Association for Retarded Citizens/U.S. 

Washington, D.C. 

DEPARTMENT OF TRANSPORTATION LEGISLATION/REGULATIONS AND 

THEIR RESULTANT AFFECT ON MENTALLY RETARDED CITIZENS ............. 97 

Robert C. Ashby 

Deputy Assistant General Council 

Regulations and Enforcement 

Department of Transportation 

Washington, D.C. 

 v 
PAGE 

TRANSPORTATION FOR THE MENTALLY AND PHYSICALLY 

HANDICAPPED ............................................................................................ 100 

Andrea Farbman, Ph.D. 

Director of Public Affairs 

National Council on the Handicapped 

Washington, D.C. 

SAN FRANCISCO MUNICIPAL RAILWAY (MUNI) SERVING THE 

HANDICAPPED ............................................................................................ 104 

Bruce M. Oka 

Co-Chairperson 

MUNI Elderly and Handicapped Advisory Committee 

San Francisco, California 

EDUCATION PANEL 

THE INDIVIDUAL FAMILY SERVICE PLAN (EFSP): 

WHAT DOES IT MEAN FROM FAMILIES? ......................................................... 108 

Ann P. Turnbull, Ed.D. 

Public Policy Fellow in Mental Retardation 

Joseph P. Kennedy, Jr. Foundation 

Washington, D.C. 

SPECIAL EDUCATION ................................................................................. 110 

Mary A. Falvey, Ph.D. 

Associate Professor 

School of Education, Division of Special Education 

California State University, Los Angeles 

Los Angeles, California 

FUTURE PLANNING IN EDUCATION: CRITICAL ISSUES IN 

TRANSITION ............................................................................................... 112 

William E. Kiernan, Ph.D. 

Director of Rehabilitation 

The Children's Hospital 

Boston, Massachusetts 

INTEGRATION OF CHILDREN WITH MENTAL RETARDATION INTO 

PUBLIC SCHOOLS ..................................................................................... 115 

Muriel W. O'Tuel, Ph.D. Assistant to the 

Superintendent 

Horry County School District Conway, South 

Carolina 

RECREATION/LEISURE/SOCIALIZATION PANEL 

COMMUNITY LEISURE SERVICES AND PERSONS WITH 

MENTAL RETARDATION ............................................................................. 119 

Stuart J. Schleien, Ph.D. Associate 

Professor 

School of Physical Education and Recreation 

University of Minnesota-Twin Cities 

Minneapolis, Minnesota 

vi 
 PAGE 

FUTURE GOALS OF SPECIAL OLYMPICS ......................................................... 124 

John W. Chromy 

Director 

U.S. Chapter Operations 

Special Olympics International 

Washington, D.C. 

PROVIDING ART AND DRAMA THERAPY SERVICES TO MENTALLY 

RETARDED AND DEVELOPMENTALLY DISABLED PERSONS ........................ 126 

Dr. Sirkku "Sky" Hiltunen 

The Art and Drama Therapy Institute, Inc. 

Washington, D.C. 

FAMILY SUPPORTS/RESPITE CARE PANEL 

"RESPITALITY": 

A UNIQUE PRIVATE INDUSTRY AND SERVICE AGENCY PROJECT .............. 129 

Rachel D. Warren 

Director 

National Resource Center on 

Family Based Services 

The University of Iowa 

School of Social Work 

Oakdale, Iowa 

RESPITE CARE FROM AN INTERNATIONAL PERSPECTIVE .......................... 132 

Shirley Cohen, Ph.D. 

Associate Dean 

Hunter College of the City University of 

New York, Division of Programs in Education 

New York, New York 

LIFE SERVICES PLANNING PANEL 

THE SELF-SUFFICIENCY TRUST OF ILLINOIS ................................................ 141 

Paul L. Medlin 

Senior Vice President, Corporate Development 

Charter Management Group, Ltd. 

Elmhurst, Illinois 

PLANNING FOR ECONOMIC SECURITY .................................................... 145 

Ronald S. Barber 

Department of Economic Security Division of 

Developmental Disabilities Phoenix, Arizona 

TRANSITION FROM WORKLIFE TO RETIREMENT FOR OLDER PERSONS 

WITH MENTAL RETARDATION ............................................................. 150 

Matthew P. Janicki, Ph.D. 

Director of Aging Services 

New York State Office of Mental Retardation 

and Developmental Disabilities 

Albany, New York 

vii 
 PAGE 

THE SUPPLEMENTAL SECURITY INCOME (SSI) AND SOCIAL SECURITY 

PROGRAMS FOR PEOPLE WITH MENTAL RETARDATION ................................. 156 

Kenneth McGill 

Acting Director, External Affairs 

Office of Governmental Affairs 

Department of Health and Human Services 

Social Security Administration 

Baltimore, Maryland 

QUALITY ASSURANCE PANEL 

ASSURING AND ENHANCING COMMUNITY INTEGRATION OF PERSONS 

WITH DEVELOPMENTAL DISABILITIES THROUGH QUALITY ASSURANCE 

MECHANISMS ....................................................................................159 

Valerie J. Bradley 

President 

Human Services Research Institute 

Boston, Massachusetts 

ASSURING THE QUALITY OF COMMUNITY INTEGRATION THROUGH A 

FOCUS ON OUTCOMES: CONSUMER, COMMUNITY AND FEDERAL 

GOVERNMENT ROLES .......................................................................................166 

Linda Toms Barker 

Berkeley Planning Associates 

Berkeley, California 

QUALITY ASSURANCE FROM A SERVICE SYSTEM STANDPOINT ........................173 

Ronald W. Conley, Ph.D. 

Special Assistant 

Administration on Developmental Disabilities 

Washington, D.C. 

ACCREDITATION STANDARDS: THE PUBLIC/PRIVATE PARTNERSHIP ................... 179 

Mary C. Cerreto, Ph.D. 

Chief Executive Officer 

Accreditation Council on Services for People 

with Developmental Disabilities 

Boston, Massachusetts 

ACCREDITATION STANDARDS FOR INDUSTRIES THAT OFFER 

COMPETATIVE EMPLOYMENT FOR CITIZENS WITH MENTAL RETARDATION 

WITHIN COMMUNITY PROGRAMS ..................................................... .......... 184 

C. Kaye Pearce 

Associate Director, Programs 

Commission on Accreditation of 

Rehabilitation Facilities 

Tucson, Arizona 

HEALTH CARE PANEL 

DENTAL CARE FOR PERSONS WITH MENTAL RETARDATION .......................... 187 

Albert L. Anderson, D.D.S. 

San Diego, California 

and 

Vice Chairman 

President's Committee on Mental Retardation 

viii 
 PAGE 

HEALTH CARE FOR PERSONS WITH MENTAL RETARDATION LIVING IN 

THE COMMUNITY: ADDRESSING THE GAPS AND FRAGMENTATION IN 

SERVICES .............................................................................................................191 

Philip R. Ziring, M.D. 

Chairman, Department of Pediatrics 

Pacific Presbyterian Medical Center 

San Francisco, California 

PLANNING FOR CHILDREN AND ADOLESCENTS WHO ARE MENTALLY 

RETARDED AND HAVE SUBSTANTIAL MEDICAL NEEDS ...........................................193 

Mary Richardson, Ph.D. 

Administrator, Clinical Training Unit 

Child Development and Mental Retardation Center 

University of Washington 

Seattle, Washington 

ACCESS TO HEALTH CARE ................................................................................... 203 

Gregory P. Weigle 

President 

Alliance of Genetics Support Groups 

Herndon, Virginia 

HEALTH SERVICES TO CHILDREN WITH MENTAL RETARDATION IN THE 

COMMUNITY, SCHOOLS AND HOME........................................................................ 208 

 Juanita W. Fleming, Ph.D. 

Associate Vice-Chancellor 

Academic Affairs, Medical Center 

University of Kentucky 

Lexington, Kentucky 

HEALTH SERVICES IN A RURAL SETTING: SOMETIMES THE D.D. IN 

MENTAL RETARDATION STANDS FOR DELIGHTS AND DILEMMAS ......................212 

George H. Daniels 

Director of Staff Development and Training 

at Sunmount DSSO 

Tupper Lake, New York 

CITIZEN ADVOCACY 

SELF ADVOCACY ..................................................................................................218 

Bernard J. Carabello 

Director/Founder 

Self-Advocacy Association of New York 

New York, New York 

CITIZEN ADVOCACY, INC. .............................................................................. 222 

Glenda Davis 

Executive Director 

Citizen Advocacy Inc. 

Grand Island, Nebraska 

ADVOCACY AND COMMUNITY INTEGRATION FROM A DEVELOPMENTAL 

DISABILITY COUNCIL PERSPECTIVE ........................................................... ...............224 

Colleen Wieck, Ph.D. 

Executive Director 

Minnesota Governor's Planning Council on 

Developmental Disabilities St. Paul, Minnesota 

ix 
 PAGE 

SELF-ADVOCACY AND "PEOPLE FOR INDEPENDENCE" ............................ 231 

Teresa Smith 

Michigan NW Area — ARC 

Garden City, Michigan 

SEVERELY RETARDED ADULTS SERVING AS VOLUNTEERS ......................... 234 

Margaret A. Hoven, M.A. 

Executive Director 

Life Skills Center 

Washington, D.C. 

 PANEL AND MODERATOR 

SUMMARY OF PANEL RECOMMENDATIONS FEBRUARY 5, 1988 

LIVING ARRANGEMENTS ...................................................................... 238 

Hank A. Bersani, Jr., Ph.D. 

EMPLOYMENT ............................................................................................ 240 

William E. Pittman, M.A., M.Ed. 

TRANSPORTATION ........................................................................ 241 

Paul A. Marchand 

EDUCATION ............................................................................................... 242 

Ann P. Turnbull, Ed.D. 

RECREATION/LEISURE/SOCIALIZATION ....................................................... 243 

Stuart J. Schleien, Ph.D. 

FAMILY SUPPORTS/RESPITE ........................................................................ 244 

Rachel D. Warren, M.S. 

LIFE SERVICES PLANNING ............................................................................. 245 

Paul L. Medlin 

QUALITY ASSURANCE ...................................................................................... 247 

Valerie J. Bradley 

HEALTH CARE ........................................................................................... 248 

Albert L. Anderson, D.D.S. 

CITIZEN ADVOCACY .................................................................................... 250 

Curtis L. Decker 

APPENDICES 

A - Presidential Forum Program Agenda ...................................................................... 252 

B - Presidential Forum Exhibitors .................................................................... 264 

C - Presidential Forum Participants and Attendees .......................................................... 266 

D - PCMR Members and Staff ........................................................................... 284 

E - Contributing Authors ............................................................................ 286 
PREFACE 

The foundation of the President's Committee on 

Mental Retardation was established in October, 1961, 

when President John F. Kennedy announced the 

formation of the Presidential Panel on Mental 

Retardation with the charge to review the status of 

programs for persons with mental retardation. 

As the Panel's recommendations began to be 

implemented, it became obvious that some overview 

and coordination of the public and private effort in 

mental retardation, on a continuing basis, was 

necessary. The need for a coordinated effort formed 

the basis for establishing a national alliance of 

government and private citizens who could provide an 

ongoing review and coordination as well as advise 

the President of the varying needs of persons with 

mental retardation. 

On May 11, 1966, by Executive Order 11280, 

President Lyndon B. Johnson, established the 

President's Committee on Mental Retardation; hereafter 

referred to as the PCMR. The Executive Order 

mandates the PCMR to provide advice and assistance 

in the area of mental retardation as the President or 

Secretary of the Department of Health and Human 

Services may request. 

Today, there are over six million Americans of 

all ages directly affected by mental retardation. It is 

estimated that the mental retardation experienced by 

approximately 1.5 million of these individuals is 

attributable to causes and origins of diseases which 

are biomedical in nature, and that the remaining 4.5 

million Americans with mental retardation experience 

this disability because of environmental/ psychosocial or 

multi-factorial contributions. 

The purpose of the Presidential Forum was to 

examine the national effort to promote maxi mum 

community integration of citizens with mental 

retardation and to highlight the experiences of 

educators, service providers, community planners, 

Federal/State officials, parents, advocates, etc. that 

have achieved success in planning, designing, 

evaluating, and/or implementing diverse community 

integration projects serving persons with mental 

retardation. Each participant was also requested to address one or more of the following "Partnership 

Themes" in their presentation: a) Federal/ State, b) 

State/Local, c) Public/Private, 

and; d) Family/Service Delivery System. 

Along with the President's Committee on Mental 

Retardation, an impressive 22 Federal, public and 

private organizations and individuals provided cosponsorship in the form of fiscal support for this 

timely initiative. They are as follows: 

ACTION 

American Association of University Affiliated 

Programs for Persons with Developmental 

Disabilities 

American Foundation on Mental Deficiency 

American Nurses' Association, Inc. 

Carter, Hawley, Hale Stores, Inc. 

DoE-Office of Special Education and Rehabilitative 

Services 

DHHS-Administration for Children, Youth and 

Families 

DHHS-Administration on Developmental 

Disabilities 

DHHS-Health Resources and Services Administration 

Bureau of Maternal and Child Health and Resources 

Development 

DHHS-National Institute of Child Health and Human 

Development 

DHHS-Social Security Administration

1 
Fairview Families and Friends, Inc. 

Goodwill Industries of America, Inc. 

Miriam and Peter Haas Fund 

Maine Department of Mental Health and 

 Mental Retardation 

Marshall's Department Stores 

Minnesota University Affiliated Program/Center 

for Residential and Community Services 

National Association for the Dually Diagnosed 

National Council on the Handicapped 

National Foundation for the Handicapped 

WEMCO, Inc. 

Mrs. Jefferson Patiterson of Washington, D.C. 

Presidential Forum participants included: 

parents, Federal, State and Local representatives, 

educators, service providers, experts in the field of 

mental retardation and representatives of 18 states and 

the District of Columbia. 

In attendance were over 350 persons from 40 

states, 3 territories and the District of Columbia, from 

all walks of life, educational backgrounds and expertise 

representing a wide variety of agencies and organizations, 

as well as parents and advocates, all of whom were interested and/or involved in programs and services that 

promote community integration for persons with 

mental retardation. 

This Presidential Forum Proceedings document 

seeks to accomplish the following significant 

community integration objectives: 

a) provide contacts and resources regarding 

programs and services which have made 

maximum community integration for persons 

with mental retardation a realistic objective; 

b) provide a sampling of programs and services 

that currently exist nationwide in 

the areas of: zoning and real estate, financing 

of community integration models, transition 

into the community, living arrangements, 

employment, transportation, education, 

recreation, family supports, respite care, life 

services planning, quality assurance, medical and 

dental health care and citizen advocacy; 

c) enhance the PCMR's ability to provide the 

President and the Secretary of Health and Human 

Services needed information relative to where the 

nation is in its efforts to promote maximum 

community integration and suggested 

recommendations that may enhance the 

improved quality of life of persons with 

mental retardation; and, 

d) identify the potential of various Federal and 

public and private program models for achieving 

maximum community integration. 

Papers contained in this Presidential Forum 

Proceedings document are the views, experiences, and 

opinions of the authors and do not necessarily reflect 

the views of the PCMR or any other part of the U.S. 

Department of Health and Human Services. 

In conclusion, the PCMR is very proud to present 

this Presidential Forum Proceedings as 

a reference and resource document. 

Albert Leroy Anderson, D.D.S. 

Vice Chairman 

President's Committee on 

 Mental Retardation 

2 
A PRESIDENTIAL FORUM: 

CITIZENS WITH MENTAL RETARDATION AND COMMUNITY INTEGRATION 

OPENING PLENARY SESSION 

February 3, 1988 

Remarks 

Opening Statements 

PCMR Community Integration Initiative 

Drug Abuse, Mental Retardation and 

Community Integration 

Public Awareness/Public Acceptance 

Family Role, Financing and Trust Planning 

Family and Real Estate 

Financing of Community Integration Models 

Promoting Maximum Community Integration 

Through People Management of Transition into 

the Community 

Remarks 

by Sydney Olson 

Deputy Assistant Secretary 

for Human Development Services 

Department of Health and Human Services 

Washington, D.C. 

Thank you, Dr. Anderson, and good 

morning, everyone. 

Welcome to Washington! And welcome to this 

important forum, whose potential to improve the lives 

and futures of millions of American citizens with mental 

retardation can indeed be momentous, even historic. 

This week, you will share experiences as well as 

expertise on successful ways to achieve our 

national goal of integrating citizens with mental 

retardation into the mainstream of community life. 

America's public policy, articulated by President 

Reagan on many occasions, is to move toward this goal 

with special vigor during the Decade of Disabled Persons. 

We know that people with mental retardation comprise 

a significant portion of that special population. These meetings are justifiably called, "A Presidential 

Forum." The President's Committee

3 
on Mental Retardation has among its many responsibilities 

that of advising the President on matters related to mental 

retardation in all its aspects. 

Out of this meeting will come a series of reports 

and recommendations to the President and to the 

Secretary of Health and Human Services, addressing the 

issue of community integration. 

The Office of Human Development Services has four 

major programs which have a relationship to mental 

retardation, as well as to community integration. 

OHDS serves citizens with mental retardation who are 

also persons with: 

1) developmental disabilities; 

2) Native Americans with mental retardation; 

3) children, youth; and, 4) elderly persons with 

mental retardation. 

So our Office has a very real role and interest in this 

Forum, and its results. 

I note among the themes to be discussed this week 

are a series of partnerships between the Federal 

government and State government, as well as the 

public/private sectors and service delivery partnerships 

with the family. 

Implicit in these themes is a partnership at the Federal 

level bringing together the various Departments and 

programs which impact upon those with mental 

retardation, their families, friends and advocates. Much 

has been achieved already, including cooperative 

agreements between HHS and the Departments of Labor 

and Education. 

It is my intention as head of the Office of Human 

Development Services — assuming my confirmation 

hearing goes well tomorrow! — to build upon these 

partnerships. And I want to reach out to still other Federal 

agencies, including the Social Security Administration, 

not only to remove existing barriers to community integration, but also to find new paths to reach that goal. 

And I want to pursue, as well, an initiative already 

well begun by Secretary Bowen, called "Family 

Caregiving." I believe Family Caregiving to be a 

rational and workable response to the needs of many 

persons with disabilities, including mental retardation. It 

stresses the important role of family members in caring 

for them, not only by making physically and financially possible for them to do so, but also by 

giving them the training, knowledge, and even 

equipment and respite they need to cope with the 

physical and social needs of the person with a disability. I 

recognize that family care giving can't be a total 

solution, but it could be a giant step toward resolving 

many such family situations. And it will contribute toward 

the mainstreaming process, because someone who lives 

with his or her family at home is, indeed, living in the 

community in a far more normal setting than some 

alternative living arrangements. 

My welcome duty this morning is to introduce to 

you someone who surely needs no introduction. As 

Chairman of the President's Committee on Mental 

Retardation, he is the President's direct representative 

on that body. At the same time, he is the chief executive 

officer of the Department of Health and Human 

Services, whose programs play such a vital part in the lives 

of citizens with mental retardation, and their families 

Dr. Bowen knows well, from his personal 

experience as a family practitioner, how deeply having a 

child with mental retardation affects the whole family. 

As a former lawmaker, he 

knows how difficult it is to make the variety of laws and 

regulations — often seemingly at odds with the goal of 

rationalizing the service delivery system — work 

together. As a former 

Governor, he knows how hard it is to administer a 

network of programs that sometimes prefer to work 

separately, rather than together. As a teacher, he knows 

how important it is to inculcate upcoming generations of 

service providers in the holistic approach, bringing 

together the various resources of a community to deal 

with the medical, social, economic, and rehabilitative 

needs of each individual who is sick or disabled. And, 

as Secretary of such a vast Department, responsible for 

our nation's major health, welfare, medical research and income security programs, he has worked tirelessly to 

strengthen programs that strengthen the family, and to 

serve those most truly in need. 

I am pleased to introduce the Honorable Otis R. 

Bowen, Secretary of the Department of Health and 

Human Services. 

4
Opening Statements 

by Otis R. Bowen, M.D. 

Secretary 

Department of Health and Human Services and 

Chairperson 

President's Committee on Mental Retardation 

Washington, D.C. 

Sydney Olson, thank you. 

Welcome, all of you. Coming to Washington in 

mid-winter may mean snow in the Capitol city, and in 

Washington that may result in a stand-still in the 

Capitol. Well, we don't want to stand still. The weather 

has helped us. 

Your groups are well-known for your tireless 

devotion to the well-being of our Nation's six million 

citizens with mental retardation. Although most of our 

citizens with mental retardation reside in the 

community today, community integration is not 

complete for most of them. And many of the 100,000 

persons in large public residential facilities can benefit 

from community services. Also, there are some who 

need 24 hour health or nursing services in special 

facilities because of their profound or multiple 

handicaps. 

Whether you're urging more community living 

arrangements, or better vocational training programs, 

you're saying: "Look, this is what disabled people can do. 

How about giving them a chance?" And every time you 

go out and try to convince another employer to hire a 

disabled person, that's the message. 

For my own part, I have committed this 

Department to ensuring that people with mental 

retardation have the opportunity to live, learn, work 

and play in their communities. 

As I see it, our job spans three key areas: 

 to provide the supports that caregiving families need; 

 to enhance community living arrangements; 

 and to help open up education and employment 

opportunities. 

Of course, there are a number of other basic areas, 

such as health and social services, and leisure and 

recreational opportunities that are needed to assure 

community integration. 

Let's look at family support needs first. And let me 

begin by praising those families that have achieved nearmiracles with a severely disabled child or adult. Their 

strength is awesome. To the rest of us it seems like 

they face impossible demands on their physical, 

emotional and financial resources. 

But they do it — with love and devotion. These 

parents give what it takes to help their child realize his 

or her full potential. 

But parents need help, too. Sometimes they become 

exhausted. That's when they need the relief that respite 

care and homemaker services provide. Sometimes 

families need financial help and some States provide this. 

And they need a range of support services that 

aren't always available; they also need to know where 

to get help, and how to get information about teaching 

techniques to use with their child. 

That's why your efforts in these areas are 

important. And we want to help you. So we've 

launched the Family Caregiving Project. 

It's a cluster of research and demonstration projects 

funded by various agencies in our Department. The 

projects that deal exclusively with mental retardation and 

developmental disabilities address topics such as respite 

care, recreation and bartering of services. 

It's information you can put to use in your work. 

Our second emphasis is to enhance community living 

arrangements. We're making progress here, too. 

Twenty five years ago, when disabled children 

moved into adulthood, they were often 

5 
moved out of the family home and into institutions. 

This often meant that years of special education and 

training in independent living were lost. For many, 

the institution became the place: 

 where self-confidence was drained away; 

 where skills and knowledge painstakingly acquired 

were forgotten; 

 and where hope for the future was lost. 

Thanks to people like you, that's changing. 

Our goal now is to integrate as many persons with 

mental retardation as we can into every aspect of 

community life. Today, each State is developing 

community-based services for the disabled. They're 

putting strong emphasis on living arrangements and the 

transition services that people need to 

become self-sufficient. 

The kinds of services required at this juncture are 

many. They include family support, health services, 

transportation, education, employment, recreation, life 

services planning and advocacy. 

They must be initiated long before the young 

people finish school, so when they do leave, they leave 

with the expectation and self confidence that they can 

support themselves. 

Indeed, we now know that most persons with 

mental retardation can learn and work at jobs. We also 

know that the longer people are jobless, the harder it is 

to place them in gainful work. And they are at 

greater risk of becoming dependent on public 

support. 

Here are some figures that indicate the challenge we 

face to move persons into living and employment in 

the community: 

 About 500,000 mentally retarded adults are receiving 

public assistance from the SSI and SSDI programs. 

Virtually none of them are employed at jobs paying 

more than $300 a month. 

 About 140,000 persons are living in intermediate care 

facilities for the mentally retarded. Almost none are 

employed. 

 Of 185,000 persons with mental and developmental 

disabilities served in state-supervised day and 

vocational programs, only 3% hold jobs. 

Coordinated and comprehensive transition services 

from school and family to community and workplace 

are a tall order. 

 But remember, years ago our goal was to 

6 

provide appropriate schooling for these children. 

We've largely achieved that now. 

The big challenge today is to get them into jobs. 

We're making progress on that front, thanks to the 

Administration's employment initiative. Since it began 

in 1983: 

 We have received over 102,000 pledges for private 

sector employment; 

 Nearly all State Developmental Disabilities 

Councils have begun State employment 

campaigns; 

 And over 87,000 persons have been placed in 

competitive employment. 

These new employees have earned wages of 

about $400 million. 

And our employment initiative campaign is opening 

still more doors. It has brought on board the American 

Bus Association, the American Hospital Association, 

the National Restaurant Association, McDonalds and 

Denny's and the Marriott and Radisson Hotels. 

We'll continue these efforts to open doors for the 

disabled by targeting our sales effort on new industries 

and individual corporations. We'll be banking on you 

to help out in this effort. 

These are exciting times for people in your field, 

and I'm glad to have this chance to meet with you. I 

know you're ready to start talking with each other and 

with us, so let me close with some personal 

observations. 

As a physician I've seen firsthand what disabled 

people can do. Later, as governor of Indiana, I pushed 

for employment and fair treatment of the disabled. And 

it didn't take me long to see that people with 

handicaps were some of the most dependable 

employees around. And, in my book, the greatest ability 

is dependability! 

Success means so many different things to different 

people. All of us have a chance to succeed, using our 

God-given talents. Our philosopher of self-reliance, 

Henry David Thoreau said: "Whoever you are, life is a 

battle in which you are to show your pluck, and 

woe be to the coward. Whether passed on a bed of 

sickness or in a tented field, it is ever the same. 

Despair and postponement are cowardice and defeat. 

We men and women are born to succeed, not to fail." 

Al Anderson, I'll turn the program back to you 

now. Thank you. 
Overview of the 

President's Committee on Mental Retardation's 

Community Integration Initiative

by Vivian Bricklin Levin 

Executive Director 

President's Committee on Mental Retardation 

Washington, D.C

 The topic of the conference: A Presidential Forum: 

"Citizens with MR and Community Integration" is very 

challenging. Twenty-two cosponsors have joined 

with PCMR to produce this conference. You will find 

their names listed on the inside cover of the program 

booklet. I want to thank each of them for their support. 

The PCMR has had a commitment to the 

furthering of community integration efforts since the early 

1970's. On November 16, 1971 President Nixon, 

following a White House Meeting with members of the 

PCMR, issued a statement inviting all Americans to join 

him in commitment to two major national goals: 

To reduce by half the occurrence of mental 

retardation in the United States before the end of 

this century. 

To enable one-third of the individuals with mental 

retardation in public institutions to return to useful 

lives in the community. 

The PCMR established a Subcommittee on Family 

and Community Services and went to work on 

community integration issues by collaborating with 

other organizations planning and implementing 

national conferences, and publishing numerous reports, 

including Annual Reports to the President and 

Secretary of the U.S. Department of Health and Human 

Services in support of community living for persons 

with mental retardation. The 1971 goal in the area of 

community integration was reached. But, the PCMR 

continued beyond the goal. 

 The PCMR is still working on a community 

integration initiative, as we note today in our 

Presidential Forum on community integration and will 

continue to do so after this Forum. Our goal is to 

foster the continuing development of strategies 

emphasizing integration into the community, 

independence and employment, while still providing 

support and protection for those persons who need such 

assistance. 

 Let me provide you with an overview of this 

Presidential Forum beginning with a restatement of its 

purpose which is "to examine the national effort to 

promote maximum community integration of citizens 

with mental retardation. 

The Forum theme focuses on partnership among 

Federal, State, and local agencies; between the public 

and private sectors; and between family and service 

delivery systems. 

The major focal areas under community integration will 

be covered in 10 concurrent panels. These include: (1) 

living arrangements, (2) employment, 

(3) transportation, (4) education, 

 (5) recreation/leisure/socialization, (6) family 

supports/respite care, (7) life service planning, (8)

quality assurance, (9) health care, and (10) citizen 

advocacy. These are the areas that are of special 

importance to us to ensure comprehensive community 

integration. 

Great changes are taking place in the field of 

mental retardation. New Federal legislation has 

attempted to address the needs and concerns of people 

with mental retardation. In particular, the Education for 

all Handicapped Children Act of 1975 which requires that 

handicapped children be educated in the "least 

restrictive" environment has challenged us. What we 

will learn about in our concurrent panel sessions, what 

we discuss and the recommendations which we will make 

at the end will assist us in fulfilling our mandate: 

Promotion of appropriate services for the population 

of individuals with mental retardation to enhance selfsufficiency through exploration and advocacy of the 

most effective methods." 

This is our great hope and our ultimate 

goal. 

Now, let us go to work on behalf of our fellow 

citizens with mental retardation. 

7 
Drug Abuse, Mental Retardation and Community 

Integration 

by Donald Ian Macdonald, M.D. 

Special Assistant to President Reagan 

and Director, Drug Abuse Policy Office 

The White House 

Washington, D.C. 

 Dr. Donald Ian Macdonald brought greetings from the 

President and Mrs. Reagan. He is a pediatrician, a 

national leader in the parents' movement against drug 

abuse and a member of the White House staff. The 

following is a summary of Dr. Macdonald's speech 

presented at the Opening Plenary Session of the Presidential Forum: Citizens with Mental Retardation 

and Community Integration: 

 The number one cause of post, neonatal or perinatal 

mental retardation is meningitis and encephalitis brain 

infection. With the new numococci vaccine, it is our 

hope that we can further dramatically decrease the 

occurrence of mental retardation. 

 The number two cause of mental retardation during 

 the post-perinatal period is trauma. 

 Another leading cause of mental retardation is fetal 

alcohol syndrome. The baby becomes "at risk" due to low 

birth weight and underdevelopment of vital organs as a 

result of alcohol consumed by the mother during 

pregnancy. 

 Twenty-five percent of drug users with AIDS have been 

infected by a needle. Babies born of mothers with 

AIDS usually are addicted to the drug that the mother 

has taken and the baby most likely will be born with a 

drug addiction and suffer profound mental retardation. 

 A growing number of infants and children involved in 

highway related accidents sustain head injuries that 

cause mental retardation. 

8
Public Awareness/Public Acceptance 

One Parent's Experiences 

by Emily Perl Kingsley 

Chappaqua, New York 

This presentation will attempt to summarize my 

activities in the area of Public Awareness/ Public 

Acceptance of the Mentally Retarded through the 

media — 1972 to present. 

BACKGROUND 

I have worked in television since 1963 in various 

capacities — research, production, talent, writing. Since 

1970, I have been a writer for SESAME STREET. In 

1985-1987, I co-wrote a television movie-of-the-week, 

KIDS LIKE THESE. 

My son was born in 1974. He has Down 

syndrome. Personal experiences coming out of that 

occurrence have shaped and directed my volunteer 

efforts ever since. 

SESAME STREET 

I joined the writing staff of SESAME STREET in 

1970, at the beginning of the show's second season. 

In 1972, I was sent to check out the Little Theatre of 

the Deaf for possible inclusion on SESAME STREET. I 

was enchanted with their style and imaginative presentation 

and recommended that they be booked immediately. LTD 

made several appearances on SESAME STREET and I was 

the writer who prepared all of their early material for the 

show. Writing material for the deaf, and becoming friendly 

with the performers, necessitated my learning sign language 

— and those growing relationships sensitized me to many 

disability-oriented issues. 

On the show, hearing impaired performers were 

depicted as having unique talents and abilities and the 

ability to communicate fully and beautifully and sign 

language was portrayed as a valuable skill Hearing 

children were encouraged to learn signing and the 

signing segments were communicated in entertaining and 

imaginative ways — to both hearing and non- hearing 

children. 

Response to LTD was wonderful and SESAME 

STREET started exploring the idea of expanding the 

curriculum again — this time for "slow learners/mentally 

retarded" viewers. Mail had indicated that mildly mentally 

retarded children were enjoying the show and learning 

from it. Producers realized that the target age for SESAME 

STREET of 3-5 years represented a mental age, not 

necessarily a chronological age. Material aimed at 

educating "normal" pre-schoolers would be just as 

appropriate for developmentally delayed children who 

were somewhat older. 

During this period, I became pregnant. Because of 

my deepening involvement with the deaf and some 

awakening awareness of the problems of the disabled. 

I attended all the planning meetings for this new 

curriculum. When my son was born with Down 

syndrome, what was up until then a fairly academic interest, suddenly became a passionate commitment. 

The original curriculum exploration involved a 

connection with the Kennedy Foundation Play-ToGrow program. Some early tapes were made of some of 

the Play-To-Grow activities (feather blowing, balloon 

basketball, etc.) and were aired on Wednesday 

mornings. 

As my son Jason grew older, he began to make 

appearances on SESAME STREET. When he was three, 

he taped a series of segments with the Cookie Monster 

demonstrating his ability to identify and label letters of 

the alphabet and then to identify a word beginning 

with that letter. This, I believe, was the first time that a 

child with Down syndrome was seen on television 

exhibiting specific academic capability. 

In addition, we started integrating children 

9 
with Down syndrome and other disabilities into the 

regular activities of the show without regard to 

disability and without regard to content material. 

Response to this comfortable mainstreaming was 

wonderful. Mail indicated that we were reaching 

people with several very important messages. 

Children with disabilities, including children with 

Down syndrome, were seeing themselves 

represented on television in a normal way for the 

first time ever and the joy of self-recognition was 

apparent. Siblings were proud to see their brothers 

and sisters portrayed in a relaxed and non-judgmental 

way. Disabled youngsters were seen doing the same 

things, academic and non-academic, as their nondisabled peers and, as a result, a lot of stigma was 

reduced. 

This experiment was acknowledged to be a huge 

success and the commitment to this concept of 

normalization continues to this day. It is one of the 

areas of which SESAME STREET has been most 

proud. 

As in many other areas, it was the hope of the 

producers of SESAME STREET that other 

programs would follow their example — but only 

now, 20 years later, are we beginning to see 

performers with disabilities routinely mainstreamed 

without regard to their disability. 

ALL MY CHILDREN 

When Jason was five, a friend called and told 

me that one of the soap operas, ALL MY 

CHILDREN, was doing a story on amniocentesis. 

Already there has been some potentially damaging, 

inflammatory dialog about "an impending tragedy" if 

the pregnancy in the story-line were to produce a 

fetus with "a problem." 

I called the production office of the show and 

asked to speak to the producer. I suggested that they 

had an obligation to present the most up-to-date and 

accurate information possible about amniocentesis 

and the possible results and options implicit in this 

procedure. An appointment was set up and I spoke 

with the producer in his office for 2-1/2 hours. 

Soap operas feel strongly about presenting current 

attitudes about current issues and they were grateful 

to receive an education regarding amniocentesis and 

Down syndrome. 

During the meeting I suggested that it might be 

very graphic and dramatic to have the pregnant 

character, who was awaiting the results of her 

amniocentesis, meet with a neighbor or friend who 

actually had a child with Down syndrome. The 

producers were very receptive to this idea and asked 

me to portray the neighbor. I agreed on the condition 

that they'd allow me to write the scene. 

 Jason and I appeared on ALL MY 

CHILDREN in October 1979. About 7 million soap 

opera viewers saw a real live child with Down 

syndrome — who talked and responded and was cute, 

polite and entirely "non-threatening." They heard 

his mother (me) acknowledge that while there are 

special challenges involved in raising a child with 

Down syndrome, it needn't destroy your life by any 

means and such a child can bring great joy to a 

family. 

I received a great deal of mail afterwards, some 

of which related incidents of pregnant women who 

had seen that episode of ALL MY CHILDREN who 

were better prepared when their babies with Down 

syndrome were born months later. 

ADVERTISING 

After my son was born, one of the most 

excruciatingly painful experiences was watching the 

media and finding that nothing on television 

reflected my life or my experience any more. If 

anything, the media seemed to conspire to flagellate 

me with experiences I would never have in my life. 

Everywhere I turned, all I saw were depictions of 

healthy normal children, families enjoying college 

graduations, weddings, and grandchildren. No one 

was speaking to me anymore. 

It made me extremely angry. 

In 1976 I wrote 133 letters — to the top 

executives of the top 35 advertising agencies in 

America handling "family"-oriented clients. I 

expressed the idea that there were about 36 million 

people with disabilities in this 

country — plus their families, spouses, children, parents, 

and concerned friends — adding up to considerably 

more than the original 36 

million — who were consumers and users of their 

products — but who never saw themselves 

represented in their print or television advertising. 

I pointed out to them that they had been 

responsive to the existence of other minority groups 

by including blacks, hispanics, women, senior citizens, 

etc. in their advertising — obviously recognizing that 

those groups represented specific consumer blocks 

which warranted direct appeal. As America's 

largest minority, I suggested that "the disabled" 

should be included in the same comfortable way — 

and that I was sure that disabled consumers would 

be economically responsive to this inclusion. 

The responses I got from the advertisers were 

shocking to me. They felt that they were not 

interested in incorporating people with disabilities 

into their ads because: 

1. viewers would be so distracted by the presence of a disabled person in a commercial, 

they would miss the name of the product. 

10 
2. they could not justify the "exploitation" of people's 

"misfortunes" in order to make a profit. 

3. they believed that most disabled people are living in 

Veteran's hospitals and so are not really consumers at 

all. 

4. while it might be a "noble" idea, they didn't believe 

that Americans were ready to view disabled people 

as living normal lives. 

5. advertising does not set trends, it follows them. They 

suggested that we contact them again in 2 to 3 years! 

6. they saw the disabled community as a bunch of 

disorganized splinter groups without any central 

organization, therefore not having any real cohesiveness 

or economic clout. 

Finally, the advertisers said that they were in 

business to make money for their clients. If the clients 

suggested this approach, they'd be more than happy to 

adopt it in their ad campaigns. They passed me off to the 

clients, happy to get rid of me. 

Another letter-writing campaign followed, this time 

aimed at the major family-oriented "clients" — (General 

Foods, Coca Cola, Nabisco, etc.) — in which the same 

basic suggestions were made. The response to this 

campaign was somewhat more positive and a few 

companies promised to explore the idea — but no real 

progress was made. 

In 1977, I conducted an informal research project, 

questioning participants at the annual convention of the 

National Down Syndrome Congress. The questionnaire 

asked people if they would like to see disabled people 

portrayed in television and print advertising. Would 

they support companies who advertised in this way? 

Of 350 responses to the questionnaire, 349 answered 

that they would love to see disabled people in 

commercials — and that they would go out and buy the 

product whether they needed it or not! The single 

dissenting response was from a person who thought that all 

advertising was foolish!

One interesting aspect is that it doesn't seem to 

matter which disability is portrayed. The depiction of 

any disability is perceived as helping the public's 

perception of all disabled. 

Since that time, I have contacted advertisers 

directly on 3 other occasions. I have appeared in 

numerous interviews, including two with Betty Furness on 

NBC LIVE AT FIVE NEWS, addressing this issue — and 

recently was quoted in a first-page interview in the 

WALL STREET JOURNAL which discussed this matter. 

Admittedly, things are improving — ever so 

slowly. Wheelchairs have appeared in commercials for Levi's, McDonalds, and Wheaties and 

McDonalds produced its now-famous 

commercial using only sign language and 

captions. The wheelchair has become synonymous 

with "disability" and we have yet to see a 

mentally retarded person in a commercial. 

[NOTE: This presentation predates the historic 

inclusion of a young person with Down Syndrome 

in a Crest toothpaste commercial during the 

summer of 1988!] 

I believe that this is simply another frontier of civil 

rights — comparable to the time when black people never 

saw themselves represented in the media. 

On the back of my car is a bumper sticker. It reads: 

 DISABLED AMERICANS: UNITE! 

I believe if we were able to "get our act together" 

and indicate to America that we are a united effort, 

once advertisers could see us as a powerful unified 

consumer block — with considerable economic clout — 

I believe that these representations would start to appear 

more regularly. 

THE FALL GUY 

We were fortunate to get to know Lou Shaw, a 

television writer and producer who had a daughter 

with Down syndrome. Serving together on the Board 

of Directors of the National Down Syndrome 

Congress, Lou often said, "Someday I'm going to 

write a show for Jason." 

Imagine our surprise when Lou called one day to 

announce that he had gotten network approval on a 

Down syndrome story idea for the TV action series 

THE FALL GUY, starring Lee Majors. 

Two weeks later we were in Hollywood 

auditioning for the series director, Ray Austin. Ray 

felt confident that Jason (at that time 10 years old) 

could take direction and learn material well enough 

to play the part planned for him. In fact, Ray 

suggested that Jason's part be expanded since he felt 

that once the audience saw him, they'd want to 

follow his storyline more than the other subplots 

being proposed. 

A 63-page script was written, with Jason's part 

appearing on 47 of the 63 pages. Jason had about a 

month to learn his part. It was written in THE FALL 

GUY genre, about a young boy with Down syndrome 

who runs away to Los Angeles to participate in the 

Special Olympics. Accidentally viewing a murder, 

the boy hides in the truck belonging to the stunt man 

(Lee Majors) who then tries to learn his identity 

and return him to his family. 

The role required following specific directions, 

playing long scenes with varying emotions and content. 

Jason was given complicated material which included 

counting in Spanish, French and Japanese, correcting 

Majors' spelling and doing an elaborate stunt 

11 
(Jason refused to use a stunt-double, completing the 

complicated stunt himself). 

On the two main airings of this episode of THE 

FALL GUY, it is estimated that over 29 million people 

say this self-reliant and clever little boy explode 

countless myths about Down syndrome in the period of 

one hour! 

THE FALL GUY has been dubbed into many 

foreign languages and has been seen all over the 

world. Now in syndication, it continues to be viewed 

all over America on a regular basis. 

On a recent trip to Jerusalem, Jason was 

recognized in the airport by several people who had 

recently seen his FALL GUY episode run on 

Jordanian television! 

KIDS LIKE THESE 

Over three years ago, I felt I was ready to put my 

feelings and experiences into a piece of dramatic work 

that would explore the challenges and the rewards of 

raising a child with Down syndrome. I proposed the 

idea for a TV movie to an old friend who is a seasoned 

and acclaimed television writer, Allan Sloane. 

Allan was excited about the idea and we started 

to work together to draft and plan an outline. We 

determined that this was going to be the "true story" 

and not some standard sugar-coated "triumph-overadversity" movie. 

When the outline and treatment were completed, 

they were sent to Allan's agent in California. The 

afternoon that he received it, the agent called to say that 

he was hand-carrying it across the street to Tyne Daly. 

He felt it was perfect for her. She bought it that first 

day. 

But it was still fully three years before the project 

saw fruition and was aired on national television. 

There were many network complications, having 

to do more with executive shuffling than with our 

project — but we got tossed around depending on 

who was in and who was out. 

At one point we reached the top of the executive 

ladder of approvals and expected to go into production 

within hours. Instead, the top executive who was 

supposed to give final approval, disappeared and left to 

work at another studio and our project was shelved by 

the man who replaced him. 

The film was saved by Tyne Daly and her 

husband, Georg Stanford Brown who marched into 

CBS and announced that they believed in this film and 

were going to make it — either for CBS or for some 

other network! The network calmed down and 

promised to reconsider their shelving of the movie and, 

after several months of deliberations, reinstated it. 

 The network was dubious about the feasibility of 

using real children with Down syndrome in the film 

— but we insisted that the integrity of the project 

demanded using real children. No child actor with 

elaborate makeup could accurately convey the 

totality of the Down syndrome experience. But the 

CBS casting department had no idea where to find five 

children who could learn material, take direction and 

who all resembled each other! We made their job 

easier by promising to cast all five of the children 

ourselves. 

We screened over 400 children — photos, writeups, videotapes — and finally decided on the five 

children we needed plus a set of understudies. The 

newborn baby in the film, amazingly, was cast 

prenatally — from a mother who had had amniocentesis 

and knew she was due to deliver a child with Down 

syndrome right around the time our filming was 

scheduled to begin! 

The film starred Tyne Daly, Richard Crenna and 

Martin Balsam and was given a full top budget 

production. I was hired as Technical Advisor and was 

allowed to be a part of every major content decision. 

The producers, actors — all the way down to set 

decorators — had a deep commitment to the honesty 

and integrity of the film and the result, I believe, was a 

film that portrayed the experience of raising a child with 

Down syndrome in a fair and true 

light. It presented neither a glamorized, romanticized 

picture, nor a depressing, discouraging picture. It 

showed the ups and downs, the joys and 

disappointments, the challenges and the rewards. 

The ratings for the night of last November 8 were 

excellent and the network was thrilled that 21 million 

people tuned in to see KIDS LIKE THESE. Yes, it was 

difficult sharing my innermost feelings, pain, fears and 

heartaches with the world — but I am pleased and 

proud that 21 million people now have a fuller, more 

accurate idea of what goes into parenting a child with 

a disability, any disability. 

Most exciting was the radiant performance of the 

five youngsters with Down syndrome — who 

demonstrated incontrovertibly that "kids like these," 

who have suffered for centuries under the burdens of 

their labels, their stigmas, their myths and stereotypes, 

can indeed be charming, capable, delightful and 

unique individuals! 

KIDS LIKE THESE was just given the prestigious 

Christopher Award, which recognizes media efforts 

which "affirm the highest values of the human spirit" 

and attempt to "change the world in which we live 

for the better." [NOTE: Since this presentation, the film 

"KIDS LIKE THESE" has been honored with: 

1. The ARC of Excellence Award from ARC 

of the United States. 

12 
2. First Prize in the Rehabilitation International Film Festival. 

3. National Media Award from the National 

Down Syndrome Congress. 

4. Certificate of Appreciation from the 

National Conference for Christians and Jews. 

5. The National Easter Seals Communication 

Award. 

6. Media Award — ARC Tidewater VA and is 

a finalist in the National Media Access Awards, to be 

given out in Hollywood in January 1989.] 

SUMMARY 

Our accomplishments in raising public 

awareness about mental retardation have been as a 

result of many things, including: 

 being in the right place at the right time. 

 knowing the right people.  not being afraid to pick up the phone or write a 

letter. 

 a healthy dose of anger, frustration, pride, 

perseverance. 

 not getting discouraged with each defeat. 

 a lot of luck, help, support and encouragement. 

It is important, however, that each of us see 

ourselves as permanent working public- relations 

ambassadors, taking every opportunity possible to 

educate and enlighten the public. The cumulative 

effective of all those small efforts made by 

individuals will ultimately add up to major 

accomplishments in improving public awareness and 

acceptance of the mentally retarded. 

13 
General Family Role, Financing and 

Trust Planning in Community Integration— 

Now and the Future 

by James H. De Ore 

Executive Director 

National Foundation for the Handicapped 

Elmhurst, Illinois

 The National Foundation has been involved with 

various causes primarily mental retardation for the 

last 26 years. We have locations in Washington 

D.C., Boston, and main headquarters in Elmhurst, 

Illinois. 

The National Foundation for the Handicapped is an unusual foundation in the sense that 

within its family of corporations, there are some 

for-profit corporations. The profits are used by 

the National Foundation to make grants to include 

organizations who provide services to the 

disabled; we do not fund the local type 

organizations. We do provide banking relationship 

for not-for-profit organizations who are looking 

for capital dollars, as well as for loans for shortterm purposes at low interest rates. 

On the national level, one goal is to bring to 

the forefront the need to make the community and 

country aware of the problems associated with 

mental retardation, as well as other disabilities. The 

National Foundation has hired the producer and 

director of "Cosmos" to heighten community 

awareness. Cosmos by Dr. Carl Sagen, as you 

know, was one of the most watched series by national 

television. The result of that series was the one or 

two years of coverage of the scientific community on 

concerns they had surrounding the dispute between 

NASA, as well as the concerns of the general 

country. 

We expect to produce a series which will 

include six thirty-minute segments, concerning all 

areas of disability. They will be oriented toward 

trying to create national awareness of the disabled 

population. The current state of the art activities 

ranging from brain research to genetics, to the 

everyday issues surrounding different causes and 

problems faced by parents with disabled children and 

adults. We hope the series will occur in the next One 

and a half years. We did an archives search of the 

television and movie productions over the last ten 

years to see if there had been any national series of 

this type done and found there was not. 

One of the major philanthropists that supported 

the National Foundation for the Handicapped was 

Anna Emery Hanson who was the mother of a 

retarded child. She had a great ambition and was 

concerned about enhancing the lives of the disabled in 

many areas. One of the areas of her concern was 

that of the lack of housing. Tax dollars were not 

there for parents in sufficient amounts. Her goal 

included exploring new ways of developing 

alternative funding sources so that additional dollars 

could be found for services. 

Over four years, a team of people from the public 

and private sector looked at this problem. We 

received great cooperation from the Reagan 

Administration primarily from Kaye Rairdin from 

the White House who is involved in State/Federal 

relations and affairs, as well as the Vice President's 

council. We also received cooperation from the 

Social Security Administration (SSA) and from the 

Health Care Finance Administration (HCFA). 

However, we had a very difficult task since what we 

were trying to research were areas where there were 

insufficient dollars available, and enhance them with 

non tax dollars. We are very pleased to announce 

that we have finally received the approval from 

HCFA two weeks ago. We had earlier secured the 

Social Security Administration's approval. 

The National Foundation was looking at 

ways of developing funds from the private sector 

which met essentially five different criteria. The 

first was that we did not want to rely on

14 
State and Federal tax dollars. Second, the dollars had 

to be significant in scope. Third, whatever was 

developed had to have a cost of living concept 

associated with it so that dollars would grow over a 

period of time. Fourth, the system should be 

voluntary not mandatory. Finally, whatever 

mechanism was created had to meet all Federal and 

State requirements. 

A substantial amount of research was done. I am 

familiar with a lot of the original founding fathers' 

papers and one of the things I happened to stumble on 

was a paper by Alexander Hamilton. What Hamilton 

was about to propose to Congress was essentially 

the idea of a financial trust. His idea was that tax 

dollars, which in those days were very very small, 

would be essentially placed in a bank institution 

and the interest from those tax dollars would be 

expended by Congress to expand its needs. The 

Congress would not be able to spend the dollars 

that were in the banking institution, that is, the 

principal. They could only spend the interest on 

the dollars. It is very interesting that if this would 

have been done, we may not be paying taxes today. 

This idea was presented to a number of financial 

experts. The up side is this certainly will work and 

the down side is that it is going to be slow. What the 

National Foundation is interested in looking at is a 

solution to long term care and a solution to a 

population of disabled such as the retarded who are 

going to be living their lives over a sixty to eighty 

year span of time. We then started looking at the 

possibility of whether or not a trust fund concept 

could be used to help provide these services. We 

looked carefully at what incentives were at work 

between parents of disabled children and adults, 

and between the private providers of care and the 

state. Additionally, we wanted to know what were 

the set of inducements that would make someone 

want to use the mechanism. 

On the State side obviously one of the needs 

was enhancement, since the taxpayer has sent a 

message that there are only so many taxes they can 

afford to pay. The states need more dollars to meet 

the needs of the disabled population. The same is true 

for Federal funds. The second is that the State needs 

a way for planning for its citizens. As many of you 

know, in most states the State knows who needs services that are currently in the state system, however, 

they do not know the populations outside the 

system that are coming up as an impact to the State 

system. 

I was amazed to find out that the Department of 

Education for instance does not make a regular 

report on a community basis of the children who are 

in Special Education classes who will be passing 

the age of 21 and going into the adult world as 

mentally retarded disabled people. Therefore, there is 

not a planning process possible by which the 

legislature or Congress can determine specifically 

who those people are and when they will impact the 

system. 

Another issue was that private sector participation 

was required. Over a period of years there has 

been a basic kind of rights issue movement between 

the disabled, Congress and the State legislature that 

has led to mistrust. It is one of the issues with which 

we are trying to deal, as to "how will parents be 

able to gain the security of knowing that the state is 

able to maintain services?". 

It was also necessary to insure low income 

provisions so that parents of disabled children or 

adults who are unable to provide dollars would be 

able to access the system. 

Finally, we wanted the system to stabilize 

income. Providers were looking for ways of generating additional dollars for care. They were also 

concerned with the cost of living because it was 

eroding constantly the amount of services they could 

provide each year through State government income 

which was being effected by lower tax collections 

thereby recession. They were unable to withstand 

the demands. Also in the same way, the result of 

high quality care was being jeopardized. The 

stabilized income situation also was critical for a 

provider because they have to meet the needs of the 

residential populations they serve each year. That 

population is going to be there whether or not the 

tax dollars increase or the cost of living goes 

down. 

Parents were looking for services that they were 

not able to receive. The condition they were 

looking for was not only services, but additional 

protection so that those services were high quality, 

and the ability to participate in those services. Many 

parents told us time and time again that they had felt 

they had been forced out of the participation with 

the provider for the care of their dependent. Also 

parents are looking for long-term security. "What 

happens after I pass away, to my son or daughter?" 

"How do I know that person can care for them?" 

We try to take these needs and we try to look at 

them in light of this concept. 

A great deal of time was spent in concern for 

the low income disabled. We wanted a system with 

low income provisions which would allow families 

to participate through various contractual ways. One 

way a family can participate is through life 

insurance. We also wanted to have a way which the 

state could monitor funding since one of the 

concerns was as distribution of the dollars for this 

program occur, 

15 
how do you know whether the worthy people that 

are out who actually need the services and are 

receiving access to those services. We wanted to 

make sure that the people who were involved in 

these services in the low income area had the same 

rights and access to services as everyone else. 

A family is permitted now for the first time in 

this country to leave to their son or daughter a sum 

of money which can be used to supplement their 

care without loss of entitlement/benefits. In other 

words Social Security Supplemental Income (SSI) 

and Medicaid eligibility would not be jeopardized 

with the creation of the Self-Sufficiency Trust. In 

the past we have read the National Association for 

Retarded Citizens pamphlets and have gone to 

attorneys about the issues surrounding our sons or 

daughters care. What they have been told 

is that you should disinherit your child or make certain 

that no dollars appear in your child’s' name 

otherwise they will lose benefits. As a result, 

millions and millions of dollars that parents wanted to 

use to provide services for their sons and daughters 

were forced out of the system. They were not able 

to be used for care so the approach we have been 

using is to say, let the parents bring their money in 

to provide for care. 

We also did not want the state legislature to control 

the parents' money. Therefore, a pooled trust receives 

the parents' money. This would impact the private 

sector similar to what I had mentioned with the 

Alexander Hamilton concept. The legislative law 

has nothing to say or do with those dollars. Only the 

interest earned from those dollars is passed through the 

state to the provider of care on behalf of the handicapped person. In a supplemental fashion the dollars 

cannot be used for rent nor clothing since this 

would supplant the Social Security entitlement 

program. The dollars will not be used to replace 

Medicaid dollars. However, dollars can be used to 

supplement care in a variety of ways. 

Perhaps the easiest way to describe how the 

dollars can be used is a staffing pattern for a small 

group home. In a staffing pattern for a small group 

home you have different components of dollars. 

Part of the dollars are committed by Social Security 

for room and board, part are Medicaid dollars for 

basic care for the person. The dollars that the parents 

would be able to enhance would be those for 

specialized staff, education, training, as well as other 

kinds of services inside the facility. The way it works 

essentially is that after the parent makes the trust, 

50% upon the death of the handicapped person will 

go to their heirs. The other 50% goes to a 

charitable fund and that charitable fund makes 

grants to low income families who have handicapped 

children. 

The law in Illinois and Maine is for the disabled 

which included mentally retarded, as well as the 

mentally ill. It is a very complex concept that was 

developed in order to meet these needs. We are 

extremely excited about this program. We have met 

many parents that have said, I put my son John 

through college and I am very proud of him. And I 

bought my other son a hardware store and he is 

thriving. My other son who is mentally retarded I had 

to go down and disinherit. I asked how long ago was 

this that you had to take guardianship? They answer, 

about 15 years ago. 

What we are trying to address is that for the 

first time a parent can leave money or give money for 

the care of their son and daughter just like they send 

them to school. The program is an exciting one 

because it should for the first time provide for a 

self participation concept in the country. To allow 

for the generation of substantial dollars for increased 

services, we are very proud of it and we hope all of 

you in all the states are able to move forward and 

participate with us in this activity. 

To illustrate the National Foundation for the 

Handicapper’s role in the development, as well as the 

operations of the Self-Sufficiency Trust model, I 

have provided a detailed narrative as follows: 

The Self-Sufficiency Trust and the 

National Foundation for the 

Handicapped 

The National Foundation for the Handicapped 

(the "National Foundation"), a charitable foundation 

serving physically and mentally disabled persons and 

their families, developed a financing mechanism to 

facilitate the coordination and integration of private 

financing for the disabled with governmental funding 

programs. This mechanism, the Self Sufficiency Trust 

of Illinois ("SST"), was established to facilitate the 

flow of money from private sources. It is designed to 

help the state of Illinois fund expanded government 

sponsored programs for the disabled and to supplement 

government sponsored programs for the disabled with 

privately funded programs. 

The SST was enacted by the Illinois State 

legislature in 1986 in response to an initiative to 

provide a means for the parents of disabled persons to 

secure financing arrangements for the life of their 

disabled children, especially 

if those children survive their parents. This 

arrangement was intended to avoid further conflict 

with rules which in some states may penalize families 

for providing direct services to persons eligible for 

Federal assistance under the Supplemental Security 

16 
Income program and Medicaid. 

The SST is governed by seven Trustees appointed 

by the National Foundation who serve as volunteers 

and control the two private sector parts of the SST's 

three funding mechanisms. The SST Private Fund is a 

revolving funding mechanism, in which families 

may contribute monies designated for life-care 

services of named beneficiaries. The SST Private 

Fund is used to either donate monies to the state in 

support of expanded State programs, or to directly 

fund activities supporting the life-care plans of 

named beneficiaries. A Charitable Trust is operated 

under the SST, in which charitable contributions from 

private contributors and the SST Private Fund transfers 

are used to serve impoverished disabled persons 

covered through the programs of the Illinois 

Department of Mental Health and Developmental 

Disabilities (DMHDD). A third fund is the State of 

Illinois' Self-Sufficiency Trust Fund (which is 

referred to in the law as the "Trust Fund" referred to 

in these materials as the "SST State Fund"). It is the 

repository for donations to the state from the 

Charitable Trust or SST Private Fund and used to 

expand existing governmental supported services of the 

Illinois DMHDD. 

The National Foundation's role in relation to the 

SST is to administer the private funds, promote the 

formation and implementation of the SST, and 

provide supporting services needed to integrate and 

coordinate public and private sector programs to the 

disabled. The State of Illinois has contracted directly 

with the National Foundation to study the needs of 

mentally disabled residents of the state, to conduct 

demographic studies and evaluations of the service 

requirements of the population, to assist the state in 

planning for future service expansion and to staff 

operation and planning for the SST. The National 

Foundation is involved in developing a joint public 

and private sector case management system for the 

mentally disabled. The SST enhances the joint 

public/private planning process by using available 

private sector dollars to support and supplement 

government programs as needs are identified. 

In conjunction with the SST, the National 

Foundation assists in planning services for the 

mentally disabled including: coordinating residential 

services; arranging clinical assessments and 

evaluations of beneficiaries; developing life-care 

plans for beneficiaries; and serving as advocates for 

disabled persons with appropriate government 

entities. 

In addition to the SST project, the National 

Foundation conducts other projects in support of 

disabled persons, including the following: providing 

grants to disabled individuals; 

2. funding of not-for-profit corporations serving 

the disabled; 

3. developing a special program supporting 

performing and fine arts for the disabled 

through the Anna Emery Hanson. Center in 

Illinois; 

4. furnishing capital for housing disabled persons; and 

5. funding activities through charitable organizations serving the disabled including the 

President's Committee on Mental Retardation, the Boy Scouts of America Camping for 

the Handicapped, and projects coordinated 

with the National Association of Centers for 

Independent Living. 

Relationship of the SST to Medicaid* 

TREATMENT AS INCOME OR RESOURCES 

Under current Medicaid law and regulations, 

the income and resources of parents and relatives who 

live apart from their disabled family members 

generally are not counted as the income and 

resources of such disabled recipients for purposes of 

Medicaid eligibility. Where income or resources are 

given to a Medicaid eligible recipient in the form of 

cash, tangible assets, or support (in the form of food, 

clothing, or shelter), the benefits received are counted 

as income and may jeopardize the status of that 

recipient for Medicaid. Transfers of assets or income 

from parents or relatives to a Medicaid eligible 

recipient are also treated as income or resources under 

these rules, even if held in a trust. 

The SST is not established to provide cash, assets, 

or support to disabled Medicaid eligible recipients. 

Instead, the income and assets of the SST are 

intended only to supplement Medicaid covered 

services and to expand state governmental services 

in coordination with Medicaid. The Supplemental 

Security Income (SSI) program does not treat 

health care and social services, which are paid for 

directly by parents to a provider, as income or 

resources in determining SSI eligibility. (See 20 

C.F.R. §416.1103(a) and (b) and §416.1201(a) 

(1987). 

In some states with more restrictive eligibility 

rules than SSI, health and social services paid for 

by private parties may be counted as in-kind support 

for purposes of Medicaid eligibility. Where states 

continue to treat such in- 

*/ This document provides a description of the applicable Medicaid law 

and regulations the facts involving relationships and arrangements 

under the SST, and our opinions of how Medicaid rules apply.

17
kind services, medical care, and benefits as income 

to Medicaid disabled recipients, they are jeopardizing 

available benefits under Medicaid. 

Federal recognition of the services funded by 

the SST as benefits provided by a governmental 

program may help to avoid counting such in-kind 

support as income. Further, since Medicaid allows SSI 

recipients to receive non- covered supplementary 

services when donated directly by parents without 

adversely affecting Medicaid eligibility, it likewise 

should recognize that such arrangements may 

continue through the SST when parents become 

elderly, move out of state, or die. 

THIRD PARTY LIABILITY 

Medicaid coverage is secondary to all other third 

party payors, which cover services included in a 

Medicaid State Plan (See 42 U.S.C. §1396a(25)). 

Federal reimbursement to a state will be denied if the 

state failed to properly determine third party payor 

liability and recover payment in advance of 

Medicaid monies (See 42 C.F.R. §433.140). 

Medicaid regulations define a third party at 42 C.F.R. 

§433.136 as: "any individual, entity or program that is 

or may be liable to pay all or part of the expenditures 

for medical assistance furnished under a State Plan." This 

definition excludes two categories from third party 

payors: first, state programs themselves are not 

considered third-party payors; second, private 

entities furnishing services outside of the scope of 

Medicaid are exempt from recovery by Medicaid 

based on third party payor rules. 

In the case of the SST, when monies are held 

by the SST Private Fund or Charitable Trust, they 

are not being spent for any services and therefore, 

not considered a third party payor source. Second, 

when the SST disburses payment to a vendor to 

provide services directly to a designated beneficiary, 

such services are intended to be outside of the scope 

of Medicaid covered benefits and should not be subject to recovery as a third party payor. Finally, when 

the SST contributes to the SST State Fund, the monies 

are then appropriated by the State of Illinois and 

constitute State funds not subject to third party 

payer recovery. 

FEDERAL MATCHING 

Federal regulations at 42 C.F.R. §433.45(b) 

permit funds donated from private sources to be 

used as the State's share in claiming matching Federal 

financial participation under Medicaid. To be used as 

the State's share, the private funds must satisfy two 

conditions that: first the funds are under the State 

Medicaid agency's administrative control; second, the 

private funds do not revert to the donor's facility or 

use (unless the donor is a nonprofit organization and 

the Medicaid agency of its own volition, decides to 

use the donor's facility). 

In the case of the SST, once monies are disbursed 

from the SST Private Fund to the SST State Fund, 

they remain in the custody of the State Treasurer and 

under the control of the Illinois DMHDD. This 

constitutes administrative control of the state. Further, 

neither the SST nor the National Foundation are 

service providers under Medicaid. Thus, funds donated 

to the SST State Fund will not revert to the SST or the 

National Foundation through provider contracts. 

Reversion of monies from the SST State Fund may 

occur only if the Illinois DMHDD is unable to 

apply the monies to the purposes designated by the 

SST Trustees, in which case the monies reverting to 

the SST Private Fund would not be used for the 

State's share in matching with Federal financial 

participation 

AMOUNT, DURATION, AND SCOPE OF 

SERVICES 

Medicaid regulations at 42 C.F.R. §440.240 require 

that services furnished under a state plan be 

comparable in amount, duration, and scope to all 

Medicaid recipients. The SST provides for 

individual accounts for designated beneficiaries of 

the SST. It also requires that monies from the SST 

pay for at least one low income disabled person, not 

designated by a Private Fund Trust account for each 

designated beneficiary. Although the SST is intended 

to be a funding source for the State's share of Medicaid financing it does not relieve the state from 

financing a comparable amount, duration and scope of 

services to all similarly situated Medicaid recipients. 

STATE MAINTENANCE OF EFFORT 

One critical feature of the SST law passed in 

Illinois was to assure State maintenance of effort in 

funding services to the disabled. The SST law 

includes two key requirements: first, to maintain 

separate accounts for each named beneficiary in 

order to monitor the level of effort; second, to 

assure that no diminution of existing services would 

occur by receipt of benefits through the SST. 

These provisions of the Illinois law enacting the SST 

will assure that the State at least will maintain the 

level of effort in the State support for Medicaid 

services as was made available prior to the funding 

from the SST. 

Flow of Funds Under the 

Self-Sufficiency Trust 

Step 1: A donor, usually a parent of a participating 

beneficiary, contributes capital or other tangible 

financial assets to the SST Private Fund and designates 

a primary beneficiary for use of these funds. The 

donor is also named co-trustee 

18 
Self-Sufficiency Trust of Illinois 

Flow of Funds Diagram 

19
BENEFIT 

COST 

Time 

of the SST Private Fund account established for the 

designated beneficiary.

Step 2: Although deposited on a commingled basis 

in the SST Private Fund, investment income is 

credited separately to the account of each named 

beneficiary. Initially, a life-care plan is developed 

by the National Foundation tailored to each SST 

beneficiary. During this period the co-trustee/donor 

retains the right to disapprove or delay 

implementation of the designated beneficiary's lifecare plan. Until disbursement for services is made 

from each respective beneficiary's SST Private Fund 

account, the donor and designated beneficiary may 

withdraw from participation in the SST Private Fund 

and recover their original contribution, if reduced by 

an amount based on a formula related to the number 

of years of participation in the SST Private Fund. 

(See Article 4, section 9 of the SST Agreement.) 

Step 3: The Trustees of the SST Private Fund 

make disbursement decisions when a life- care plan is 

developed for the designated beneficiary, and the 

co-trustee assents to its implementation. 

Disbursements from the SST Private Fund can be 

made in any of four ways. First, monies in the SST 

Private Fund (whether interest or principal) may be 

donated by agreement to the SST State Fund. Second, 

monies in the SST Private Fund may be disbursed to 

vendors, such as developmental disability advocacy 

groups who will monitor the status and condition of 

the designated beneficiary. Third, if the designated 

beneficiary dies or withdraws from the SST after 

receiving services, up to 50% of the remaining monies 

in the designated beneficiary SST Private Fund 

account will revert to the donor. Finally, the 

remaining monies in the SST Private Fund will be 

paid to a related Charitable Trust, operated by the 

National Foundation, if the designated beneficiary 

either dies or withdraws from the SST. This Charitable Trust is operated as a service funding 

mechanism of the SST to pay for services to poor 

persons for whom no donor has contributed money 

to an SST Private Fund account. 

Step 4: After monies are donated to the SST State 

Fund (by either the SST Private Fund or the 

Charitable Trust) they are deposited under the control 

of the State Treasurer. The SST State Fund is subject to 

appropriation by the state legislature and 

disbursement based on vouchers approved by the 

Department of Mental Health and Developmental 

Disabilities (Illinois DMHDD). 

Step 5: Disbursements by the Illinois DMHDD 

are made on the basis of individual accounts to 

facilities serving the mentally and physically 

disabled. Each individual account is maintained for 

each beneficiary entitled to benefits from the 

Illinois DMHDD. 

Step 6: Disbursements by the Illinois DMHDD 

are made to its regular service providers. Once 

monies are deposited with the state, they will not 

revert to the SST Private Fund nor to the Charitable 

Trust, unless the Director of DMHDD determines 

that the monies donated can not be used to provide 

care, support, and treatment of the designated 

beneficiaries in accordance with the SST donation 

agreement. The decision to return donated monies to 

the SST Private Fund may be initiated within the 

Illinois DMHDD or by the SST Private Fund 

Trustees. 

Control Over the Funds Deposited in the Self-Sufficiency 

Trust 

Generally, control over the monies set aside for 

the SST will vary depending on where the monies 

are deposited.

20
Parents/Donors/Co-Trustees — exercise 

some degree of control over the monies deposited 

into the SST Private Fund until a life-care plan is 

developed for the designated beneficiary and is 

approved by the individual donor/co trustee. While 

monies remain in the Private Fund, they may be 

withdrawn based on a schedule of limits (appearing 

at Article IV, Section 9 in the SST Agreement). The 

individual donor/ co-trustee may not exercise any 

control over the monies disbursed by the SST 

Private Fund to vendors, to the Charitable Trust, or 

to the State of Illinois. 

Trustees of the SST — have full control over 

both the Charitable Trust and SST Private Fund. The 

Trustees will not exercise the right to disburse 

monies from the SST Private Fund until agreement 

has been reached with the co- trustee over the life-care 

plan and its purposes, implementation, and start-up 

schedule for disbursements on behalf of the 

designated beneficiary. Once such services to the 

designated beneficiary begin, the SST Trustees have 

wide latitude to make disbursements. Such disbursements made to the State on behalf of 

designated services and beneficiaries will not revert to 

either the SST or the Charitable Trust due to powers 

or authorities exercised by the Trustees. As a matter 

of practice, donations to the State of Illinois by the 

SST Trustees will only be made based on an 

agreement in which such donations are consistent 

with the state's own mental health service plan. 

Once donations are made to the State of Illinois, 

they are in the sole possession and control of state 

officials. 

National Foundation for the Handicapped — will administer the SST Private Fund and 

Charitable Trust at the direction of the Trustees. No 

control may be exercised over monies deposited 

with either the SST Private Fund or the Charitable 

Trust. 

The Illinois Director of Mental Health 

and Developmental Disabilities (DMHDD) 

— has full control and authority to disburse monies 

in the SST State Fund donated by the SST's two 

private funds, as if the monies were raised through 

State taxes. The Director may obligate himself 

voluntarily to use of the monies for designated 

services and beneficiaries, so long as it is consistent 

with the needs and uses approved by the Illinois 

DMHDD's mental health plan. The State's mental 

health plan must furnish comparable services 

statewide in order to comply with Medicaid so that 

the same services will be furnished to other 

recipients of State services even if they are not 

participating in the SST. If the Director determines 

that the uses designated by the SST Trustees' agreement with the State are inconsistent or contrary to 

purposes of the Illinois DMHDD, the Director must 

return the money to the SST where it will be 

redeposited in the SST Private Fund or Charitable 

Trust. 

Designated Beneficiary — has no direct use, 

control, or power over the monies deposited in any 

of the funds of the SST. The designated beneficiary 

receives benefits from the SST to the extent that it 

does not reduce entitlement to other Federal or 

State benefit programs. 

State Treasurer — maintains accounting for 

the SST State Fund when monies are deposited with 

the State. The Treasurer is obligated to disburse 

funds based on vouchers submitted by the Illinois 

DMHDD. 

Purposes and Limitations of the Self-Sufficiency 

Trust 

Article IV, Section 15 of the Self-Sufficiency Trust 

of Illinois states that, “No distributions from the 

Private Fund shall be used to pay for the support of a 

Participant as the term support is defined under 

Federal or State benefit pro-grams, including but 

not limited to, Social Security, [and] Medicaid.... In 

particular, no distributions shall be used to provide 

for food, clothing, shelter or items which are 

considered support under Federal or State benefit 

programs." These limitations on the use of monies 

deposited with the Self-Sufficiency Trust (SST) are 

reflected as well in the donor's transfer agreement, 

the State law authorizing the SST State Fund, and 

the policy of the state, in a letter from Ann Kiley, 

Director, Illinois DMHDD to the Social Security 

Administration.*/ Furthermore, no funds from the 

SST Private Fund or Charitable Fund may be used 

to pay for medical or health services covered by 

the Illinois Medicaid program except for those 

emergency or other services which are not covered 

or paid for by the State Medicaid program. 

Consistent with these limitations, monies in the 

SST Private Fund and Charitable Trust may be spent 

on behalf of designated SST beneficiaries for: social 

services, rehabilitation and remedial services, 

educational services, recreational programs, respite 

services, habilitative services, and training programs 

to assist disabled persons in managing activities of 

daily living. Additionally, monies may be transferred 

from the SST Private Fund to the SST State Fund. 

As so supplemented, the SST State Fund may be 

expanded, in combination with State general 

revenue funds, for: (i) a portion of the costs of 

residential facilities and services where SSI and 

Medicaid disabled recipients reside; and (ii) as the 

State's share of required I.FP to pay per diem rates 

to residential facilities are Medicaid providers; and 

(iii) to expand services 

21 
offered by the Illinois DMHDD. Finally, monies 

from the two private funds of the SST may be 

used to pay for advocacy services which consist of monitoring visits by private sector 

ombudsmen who assure that appropriate care 

and treatment are being made available to designated beneficiaries receiving medical support and 

maintenance from State funded facilities. 

The actual distribution of monies from the SST 

Private Fund will depend upon the life- care plan 

developed for each designated beneficiary and 

participant. 

22 
Zoning, Real Estate and Related Issues 

by Arlene S. Kanter, Professor 

at Syracuse University School of Law, 

and Consultant to and formerly 

Staff Attorney at the Mental Health 

Law Project, Washington, D.C. 

© 1988 by Arlene S. Kanter. 

All rights reserved. 

I. AN OVERVIEW OF THE LEGAL AND SOCIAL ISSUES CONCERNING ZONING AND 

THE DEVELOPMENT OF HOUSING FOR 

PEOPLE WITH MENTAL RETARDATION: 

At 23, Joanie had spent 9 years in an institution for 

people with mental retardation. She exhibited 

minimal capacity for language and personal care, 

suffered psychological problems due to large doses 

of tranquilizers she had received over the years, 

exhibited aggressive outbursts and had an I.Q. of 24 

which placed her in the category with severely-toprofound retardation. In 1977 Joanie moved in to a 

community home called "The Residence" in a 

small town in Minnesota. Two years later Joanie had 

become capable of caring for her personal needs; 

improved substantially her language skills; almost 

never had aggressive outbursts and experienced a 30-

point increase in her I.Q. which places her in the 

category of mild retardation. Several residents of the 

town had attempted to prevent the establishment of 

"The Residence" but failed after a two year legal 

struggle. ("Exclusionary Zoning," North 

Carolina Central Law Review, 1981, pp 167-

190).

This example is obviously not unique nor outdated. 

Since the early 1970s, when large numbers of children 

and adults were released from institutions — mental 

hospitals, mental retardation facilities and correctional 

facilities — communities have sought to prevent these 

people from living next-door. 

Thus, the fact that the development of group homes 

and community residences has not kept pace with the 

dramatic increase in need that has occurred in the last 

two decades may be attributed in part to funding 

problems But community opposition, evidenced by the 

enactment of exclusionary zoning laws, is often an even 

more insidious cause. 

In the next few minutes I will discuss the 

following. First, I will review briefly the history of the 

relationship of zoning laws to group homes for people 

with mental retardation. Then I will ever so briefly 

discuss how zoning laws work for those of you who 

do not know. Finally, I will discuss the three strategies 

that I have found to be effective in overcoming restrictive 

zoning laws. They are litigation, advocating for effective 

State and Federal legislation and community education 

or conciliation. None of these strategies, of course, are 

mutually exclusive. 

II. HISTORY OF THE APPLICATION OF 

ZONING LAWS TO RESIDENCES FOR 

MENTALLY DISABLED PEOPLE 

The number of CRF's has grown dramatically in 

the last decade. A survey of small facilities (fewer than 

15 residents) for developmentally disabled people 

alone showed 611 such facilities existed in 1972, 

3,225 in 1977 and by 1982 the number had nearly 

doubled to 6,414. 

Although the numbers have increased, the 

opposition has not decreased. The introduction of 

living environments for people with mental 

retardation into communities has been met with 

rebellion and indignation. And, although initial 

success by those who oppose mentally retarded 

23 
people from living in the community has waned, and 

a majority of states now support the establishment of 

group homes in the community, even in the more 

liberal jurisdictions, the threat of neighborhood resistance 

and prejudice remains strong. In fact, a 1985 study of 

the American Planning Association indicated that 

"zoning is the major stumbling block to the 

deinstitutionalization movement." (Jaffe, M. & Smith, 

T Siting Group Homes for Developmentally 

Disabled Persons, Planning Advisory Service, 

Report No. 397). 

Zoning laws originated with the industrialization 

and urbanization of the late nineteenth century as a way 

to accommodate the competing demands of protecting 

the community's health and safety and the economic 

needs of the new industries. Zoning laws were, and are 

today, recognized as a proper exercise of the State's 

police power. Generally, they contain few substantive 

provisions and typically seek to "promote the general 

welfare" by affording localities the power to zone to 

"prohibit activities considered harmful to the 

community." 

In 1926 the United States Supreme Court upheld 

the right of municipalities to enact zoning laws. In 

Euclid v. Ambler Realty Co., 272 U.S. 365 (1926), 

the Court defined zoning as a legitimate exercise of a 

locality's police power so long as the particular 

ordinance bore a rational relationship to a permissible 

State objective. According to the Court, zoning laws 

cannot be used as a license for otherwise 

unconstitutional or unreasonable actions by a 

municipality and cannot be "clearly arbitrary or 

unreasonable, having no substantial relationship to the 

public health, safety, morals or general welfare" 

Despite the Supreme Court's pronouncement in 

Euclid that zoning laws cannot be used "for 

otherwise unconstitutional actions," some communities, 

relying on prejudices and fears, have seized upon local 

zoning laws to discriminate against certain groups of 

people by excluding them from residential neighborhoods. As we know, zoning laws have been used to 

exclude certain racial minorities and religious groups 

from certain neighborhoods. Yet such zoning laws 

have been struck down, one by one, as unconstitutional. 

Efforts to "zone-out" group homes for people with 

mental retardation have continued, however. From the 

local government perspective, the community residence 

in a residential area is an anathema. Residents fear that 

the homes will lower property values and destroy the 

character and tranquility of a neighborhood. 

Accordingly, zoning authorities (often at the instigation 

of affluent residents) have employed a variety of 

methods to exclude this "unwanted" land use. 

Typically, the local zoning ordinance will 

designate certain areas of the municipality as "single 

family residential" zones. The exclusionary nature of 

these zones is often premised on an extremely 

restrictive definition of family, limiting occupancy in 

such zones to persons related by blood, marriage or 

adoption. Other ordinances treat a residence for 

mentally retarded people as a boarding home, 

permissible only in commercial zones. And still others 

treat them as hospitals or nursing homes and permitted 

only in zones "suitable" for such use. 

III. HOW ZONING LAWS WORK 

Most zoning laws divide property into three districts: 

residential, commercial or mixed 

use. There are three basic ways in which zoning 

ordinances may regulate the opening of homes for 

people with mental retardation in residential districts. 

These define the facility as 

a "permitted use", "special-use", or by construing the 

definition of "family" to include nontraditional, 

congregate living arrangements, such as congregate 

housing facilities. 

A permitted use is a use of land which the zoning 

ordinance specifically authorizes in a certain zoning 

district. In other words, a permitted use is one for 

which local officials can issue a permit to construct 

or occupy a structure on the basis of an application, 

without further consideration at a public hearing. 

Providers seeking to open homes for people with 

mental retardation in an area in which such a 

facility may be considered a "permitted use" would 

have no zoning difficulties at all. So long as the 

facility satisfied all applicable code and licensing 

requirements, the facility would be permitted to 

open automatically. 

A "special-use" or a "conditional-use" is a use 

of land for which the zoning ordinance specifically 

requires that a special- or conditional- use permit be 

obtained before a residence can be established. Such 

a requirement often even applies in multiple-family 

areas. And before the permit is granted, the local 

government is commonly required to conduct a public 

hearing on the permit application and approve the 

application before the city can issue the permit to 

construct or occupy a structure on a certain parcel of 

land. In addition, even if the permit is granted, it may 

include certain conditions including compliance with 

elaborate building code standards and may even 

include a restriction on the number of residents. 

An example of a recent case involving a 

challenge to a denial of a special-use permit is 

Cleburne v. Cleburne Living Center Inc., 

473 U.S. 432 (1985). In this case, the Supreme Court 

was asked to consider whether the city of 

24 
Cleburne, Texas had acted properly in denying a 

special-use permit to the operator of a group home for 

13 mentally retarded adults. The Court upheld the right 

of the group home to open, 

although it rejected the plaintiffs' claim that people 

with mental retardation should be treated the same as 

black people, women, and other minorities who are 

afforded greater protection under constitutional 

analysis. According to the Court, the city's ostensible 

justifications for denying the permit were either 

impermissible or unworthy of belief The Court 

found that "mere negative attitudes of fear, 

unsubstantiated by factors which are properly 

cognizable in a zoning proceeding, are not 

permissible bases for treating a home for mentally 

retarded people differently from apartment houses, 

multiple dwellings, and the like. 

IV. STRATEGIES 

There are, in my view, three ways to overcome 

exclusionary zoning tactics, and it is these strategies 

which I would like now to address. They are 

litigation, legislation and conciliation/ education, as I 

will call the third. 

A. Litigation 

Most cases challenging exclusionary zoning 

practices pit a group home operator against the city 

which has denied a permit to open. These cases more 

often than not turn on the question of whether the 

home at issue should be construed to meet an 

ordinance's definition of family. Other cases involve 

constitutional challenges, alleging that by denying a 

permit to a particular group home, the constitutional 

rights of the prospective residents are violated. 

1. State Court Cases 

Perhaps as many as 90 percent of zoning cases 

are heard in state courts since a zoning case heard in 

a federal court must involve federal constitutional 

issues or meet other constitutional requirements. Thus, 

while advocates for people with mental retardation 

have traditionally favored bringing cases in 

federal courts, in most cases, state courts will have 

jurisdiction. This may not be a disadvantage, since 

advocates have found that state judges are increasingly 

well-informed and sympathetic to the rights of 

disabled people. 

There are four types of theories or legal claims 

which have been used in state courts to uphold the 

right of a group home to open: 

 A state law preempts local zoning law, and the 

action taken by a locality has violated the state law. 

Thirty-four states now have such laws. 

 Unrelated residents of a group home meet the 

definition of a "family" as required in the 

local zoning ordinance. This is the most common 

type of legal claim made in state court. In the vast 

majority of zoning cases, state courts have 

agreed that residents and staff of a group home 

do constitute a family, although not related by 

blood, marriage or adoption. States which have 

made favorable rulings in this area include 

Colorado, Connecticut, Georgia, Iowa, Kentucky, 

Louisiana, Missouri, Minnesota, New York, North 

Carolina, Ohio, Pennsylvania and Rhode Island. 

(One notable exception to this trend was the 

Omega case in Virginia, which involved a 

covenant forbidding four or more unrelated 

people from occupying a house. The presence of 

live-in staff members was determined to make the 

group home in question of a commercial 

establishment rather than a family residence. 

However, to date this case has had little impact as 

a precedent nationwide.) 

 A residence is operated by the state, or by an 

agency under contract to the state, or receives 

100 percent funding from the state. Since states 

are immune from local regulation, local zoning 

ordinances do not apply to the residence in 

question. This is a relatively new approach to 

zoning cases, but one which has met with 

considerable success. 

2. Federal Court Cases 

The case of Cleburne v. Cleburne Living 

Center, Inc. remains the seminal Federal case, since it 

was decided by the U.S. Supreme Court. In Cleburne, 

the Court ruled that the prospective residents of the 

group home had been discriminated against and 

treated differently under the city's zoning law solely 

because of their mental retardation. Thus, their 

constitutional right to equal protection under the 

law had been violated. 

Inf. W. v. City of Tacoma, 720 F. 2d 1126 

(9th Cir. 1983). the Ninth Circuit Court of Appeals 

held that mentally ill people are entitled to a higher 

level of review and that the local zoning authority 

failed to pass a stringent test to prohibit mentally 

ill individuals from living together in a group home. 

The case involved eight individuals with histories 

of psychiatric hospitalization. 

Another relevant suit was recently settled 

in U.S. District Court in Ashland, Kentucky, by 

MHLP, the Kentucky Civil Liberties Union, 

Pathways, Inc. (a group home developer and 

operator) and four prospective residents. In 

this case, the city responded to the provider's 

application to open a group home by rezoning 

the street on which the home was to open so 

as to prohibit multi-family uses. When Pathways, Inc. then tried to build and operate an 

25 
apartment complex for people with and without 

mental illness, the city essentially rezoned the entire 

city to prohibit the proposed apartment building. Thus, 

Pathways was left without any potential sites. The case 

was successfully settled after MHLP argued that the city's 

actions constituted blatant discrimination against mentally ill people. The result of the settlement is that the 

city was ordered to rescind the changes to the zoning 

laws and to grant Pathways the necessary permits to 

open. 

Other cases involving Federal constitutional issues 

are:

 Lieberman v. Board of Tax Review in Greenwich, 

Connecticut. A group of property owners who were 

unsuccessful in preventing the opening of a group 

home for adults with mental illness in their 

neighborhood petitioned the tax review board to 

lower assessments on their homes. The tax board 

agreed to lower assessments, based solely on the 

neighbors' fear that the presence of the home 

justified the reduction. Connecticut's attorney 

general, Sen. Lowell P. Weicker, Jr. (as a 

Greenwich taxpayer) and MHLP (on behalf of an 

association of group home operators) filed suit 

against the tax review board, charging that its 

decision was motivated solely by prejudice and fear. 

This case has yet to be settled, but it is hoped that it 

will alert other tax review boards to the fact that 

similar actions may fall under legal scrutiny. (Since 

this speech was presented, the case was settled with 

the town agreeing to do new assessments on all the 

homes without using the group home as a factor in 

its calculations). 

 People v. 11 Cornwell Company in New 

York. A group of neighbors, upon hearing that a 

group home was planned, bought the property on 

which the home was to be located. The state sued 

the property owners on the grounds that their action 

violated the civil rights of the prospective residents 

and the New York human rights law. The Second Circuit Court of Appeals upheld the district court's 

decision in favor of the state and even ordered the 

payment of attorneys-fees against the law-breaking 

neighbors. 

3. Cases Involving The Right of People 

 with Mental Disabilities to Live 

in Independent Housing 

There is only a very small body of law protecting the rights of people with mental disabilities 

living in independent housing. In one case, a 

mentally ill woman who claimed reliance on a 

pet could not gain access to public housing 

because the lease forbade pets. A suit was 

brought in Federal court, claiming that forcing 

her to comply with the lease was a violation of the 

anti-discrimination clauses contained in Section 504 of 

the Federal Rehabilitation Act of 1973. The court ruled 

in her favor. 

MHLP is beginning to develop cases aimed at 

preventing evictions from public housing (as a means 

of preventing homelessness) under various antidiscrimination laws and state statutes. 

Most such challenges will rely on Section 504 of 

the Rehabilitation Act of 1973, which, for the first 

time in our nation's history, guaranteed the civil rights of 

people with disabilities. In the 14 years since 

enactment of Section 504, all of the Federal agencies 

responsible for enforcing the law in regard to the 

programs they fund (schools, libraries, health 

centers, etc.) have published regulations to implement 

it — with the sole exception of the Department of 

Housing and Urban Development. 

In 1978 and again in 1983, HUD proposed 

regulations that never became final rules. Proposed 

rules that were published in 1983 provoked a storm 

of protest by the civil rights community and by groups 

representing the elderly, children and low-income 

tenants. 

A primary cause of the protest was HUD's failure to 

issue regulations recognizing that recipients of Federal 

dollars have a statutory responsibility to accommodate 

the needs of disabled people. For example, all other 

agencies' regulations require recipients to review the 

physical accessibility of their buildings and to develop 

transition plans for appropriate architectural changes. By 

contrast, HUD's draft rules impose no requirement on 

public housing projects (the largest source of housing 

for low- income tenants, whether disabled or not) to 

conduct any such review, much less to develop transition 

plans or make architectural changes. All other agencies' 

regulations also require recipients to review and amend 

any of their policies and practices that result in 

discrimination against people with disabilities by 

denying them an equal opportunity to benefit from the 

recipient's program. The HUD draft, by contrast, absolves 

recipients of HUD funds from altering any policies they 

find inconvenient to change. 

As a result of the public outcry, HUD substantially 

revised its proposed rules. A new version is currently 

circulating within the agency and we understand HUD 

plans to publish it as final regulations without 

providing any further opportunity for public comment. 

Although an improvement on the 1983 proposed rules, 

we have reason to believe that the current version is 

still gravely flawed and inconsistent with the rules 

adopted by the other Federal agencies 10 years ago. 

Without question, housing regulations for 

Section 504 are long overdue. HUD has delayed 

enforcing the 1973 antidiscrimination law with26 
out them. As long as the agency continues to stall, 

thousands of disabled adults and children will remain 

inappropriately and unnecessarily consigned to 

institutions, nursing homes and shelters. Yet the HUD 

rules will control both access by tenants to housing 

assisted with Federal tax dollars and the policies and 

procedures that housing managers and owners must 

follow. It is therefore most important for the HUD 

regulations to fulfill the intent of Section 504, of 

protecting disabled people from discrimination. (Since 

this speech was presented, on June 2 HUD issued its 

final regulations. They do reflect a dramatic 

improvement over the version proposed in 1983). 

B. Legislation 

1. State Statutes 

The second, but not mutually exclusive, way in 

which restrictive zoning laws may be fought is in the 

legislature. In recent years approximately 34 states 

have enacted State statutes, preempting local zoning 

laws. 

The statutes vary in their approach. Generally they 

restrict the number of permitted occupants. Some 

define group homes as those occupied by six or fewer 

residents, while others allow additional residents and 

may permit live-in staff as well. 

Some simply define residents of group homes as 

a "family" for zoning purposes. Others say such 

homes constitute a single-family residential use, and 

still others say group homes are a permissible use in all 

zoning areas. None of these provisions are mutually 

exclusive, however, and the statutes in many states contain 

language incorporating all of them. 

Some State statutes also require that a group home not 

be located within a certain distance of other similar 

homes. These "dispersal requirements," as they are 

known, are accomplished in different ways. Some 

prohibit "undue concentration", others require specific 

distances between group homes and some, like New 

York's Padavan Law afford the State discretion in 

determining whether the existence of a group home 

would cause "over concentration" of such facilities in 

a given neighborhood. 

2. Federal Statutes 

In addition to State statutes, attention is being 

paid recently to the role of Federal legislation. As 

you may know the Fair Housing Act was enacted in 

1968 to prohibit discrimination in all public and private 

housing-related activities. The law was enacted 

specifically in response to the death of Martin Luther 

King, Jr., and addressed discrimination based on race, 

color and national origin. Since 1979, Congress has 

debated amending the law to expand its coverage to 

include families with children and individuals with 

disabilities. 

The law will likely be amended this year to 

include protections for people with disabilities. The 

effect of such an amendment will be enormous 

since it will give people with mental retardation 

and others the right we all take for granted: the 

right not to be turned away or evicted from 

housing simply because someone may not like the 

way we look. 

Yet there is deep concern that, without energetic 

advocacy, the amendments might not adequately 

protect the rights of tenants and home buyers who 

have mental disabilities. For example, the law will 

address the extent to which local health, safety and 

zoning laws may be used to limit the development of 

housing programs for disabled people. It would be 

sadly ironic if the Federal law were to protect the 

rights only of mobility-impaired tenants, limiting the 

advances that many localities have already made in 

prohibiting the use of zoning requirements to exclude 

people with mental disabilities. (The Fair Housing Act 

was amended on September 13, with an effective 

date of March 12, 1989). 

3. Federal Housing Policies 

HUD controls the funds that Congress annually 

appropriates under Section 202 of the Housing Act to 

encourage the development of appropriate community 

housing for elderly and disabled people. It also 

controls the management policies for all federally 

assisted housing. 

The agency is well-known for frustrating the 

intent of the funding laws by making it impossible 

simultaneously to develop housing and comply with 

HUD's administrative requirements. Many developers 

have spent two or three years meeting the agency's 

continuing demands for approvals and revisions only to 

find that changes in fair market rents and financing 

policies have made completion of their projects 

impossible. 

In addition, HUD has made little or no attempt to 

coordinate the policies of its housing and community 

development divisions with those of the Fair 

Housing and Equal Opportunity Office. As a result, 

agency policies are internally inconsistent. They often 

perpetuate discriminatory practices and unnecessarily 

restrict the number, location and type of housing 

available to tenants with disabilities. 

For example, with two or three exceptions, HUD's 

program regulations prohibit discrimination on the basis 

of race but not on the basis of disability or age. As a 

result, the agency does not consider that 

accommodation of the needs of elderly or disabled 

people is required in any of the housing it funds except 

those specifically designed for these populations.

27 
The result is both to limit housing opportunities 

for elderly and disabled people and to promote the 

segregation of these populations. 

C. Conciliation/Education 

The third strategy to overcome restrictive zoning 

laws is by "persuasion" or conciliation. This method 

may take many forms. 

1. Property Values 

The most common concern expressed by 

opponents to group homes is that establishment of a 

group home or halfway house nearby will devalue 

their property. It will not. Numerous studies have 

established conclusively that the location of a group 

home or community residential facility for mentally 

disabled people does not adversely affect property 

values or destabilize a neighborhood. I have personally 

reviewed every available study on the subject and, 

without exception, each study shows that location of 

a group home does not have the feared affect. 

These studies, approximately 30 in all, were 

conducted in a range of neighborhoods — from uppermiddle-class to low-income, from single-family to 

multi-family housing and apartment complexes, from 

black to white to racially mixed and from older to 

younger to mixed-age communities. 

The most recent study on this issue was 

completed in the District of Columbia for the D.C. 

Association for Retarded Citizens. It establishes, 

unequivocally, that neighborhood property values are not 

in any way adversely affected when group homes 

open. 

In Lansing, Michigan, another study reaches the 

same conclusion. It shows that the average sale price 

after a group home was established was equal to or 

higher than the sale price 

of a home in the control neighborhood. In 

Philadelphia, property transactions were tracked in a sixblock radius of several residential facilities. The number 

of transactions actually diminished by 2 percent after 

the opening of a group home. 

Similarly, an Ohio study found the following. 

First, property values in group homes had the same 

increase or decrease in market price as homes in 

neighborhoods without group 

homes. Second, close proximity to a group home did 

not significantly alter the property's market value and 

that adjacent properties did not decline in value. And 

third, the study found that group homes did not generate 

more turnover of property than in other similar neighborhoods. Finally, another Ohio study found property 

values increasing less as distance from the facility 

increased, indicating that a group home can be a 

positive factor in upgrading a neighborhood.

2. Character of the Neighborhood 

In addition to neighbors' fear about property 

values, some neighbors are concerned simply that 

location of a group home or half-way house will 

change the nature or character of 

the neighborhood. This fear is equally unfounded. 

Studies reveal that group homes are maintained at 

least as well if not better than surrounding homes and 

that such homes are not conspicuous in their 

neighborhoods. Further neighborhood activity 

patterns do not change nor is there greater noise or 

traffic associated with group homes than other private 

homes. 

2. Mentally Disabled People Pose No 

Threat 

The third most common concern expressed by 

opponents of group homes is that mentally disabled 

people will be dangerous as neighbors. This stereotype 

is simply wrong. People with mental retardation are 

no more likely to commit violent acts than members of 

the population at large. In fact the numerous studies 

which have been done on this subject show that they 

are less likely. 

Residents of group homes who are mentally 

retarded are rarely involved in behavioral or criminal 

incidents. In a two-year study of nearly 2,000 

developmentally disabled people, fewer than one 

percent were reported to have been in the custody 

of the law. A second study of 20 family-care homes 

reported that 96 percent of the mentally retarded 

residents had no recorded behavioral difficulties in the 

community. And one of the most recent studies has 

found that it is probably safer to be a neighbor of a 

group home since the arrest rate for adults in the 

general population is 60 per 1,000, significantly higher 

than the rate among mentally retarded residents of 

group homes, which is 3 per 1,000. 

Despite the unequivocal showing that mentally 

retarded people make good neighbors and that a 

residence for them does not devalue neighboring 

property or otherwise adversely affect the 

neighborhood, opponents of these homes continue to 

embark on various strategies to block the opening of 

group homes, but with limited success. 

V. CONCLUSION 

People with mental retardation can be found in 

every State, at every age level and among all 

races, ethnic groups and economic classes. 

Indeed, most mentally retarded people live, 

learn, work and play in our neighborhoods — as 

children living at home and attending public 

schools and as adults living independently if 

they are able, or if they are not, with relatives 

28 
friends or group homes, if they are available. Yet 

fear and prejudice of people with mental retardation 

have resulted in prolonged debates over amendments to 

zoning laws and even longer legal battles over the rights 

of these people to live in the community — in my 

neighborhood, in your neighborhood. 

Just as a community has no legal right to exclude 

specific racial minorities or ethnic groups, it has no 

right to keep out people who seem different. Stated 

another way, people with mental retardation have the 

same right as you or I to live in the community. And we 

should all take responsibility for accomplishing that 

goal. 

A parting note. Seldom are judges quotable. 

However, I would like to leave you with a statement 

made by one judge who held that a community had no 

right to "zone-out" a group home for mentally 

disabled people: "The concept of the king and his court living within the castle and the serfs residing outside the 

walls was never contemplated to be the social 

order of this country." 

Russell Knee v. Town of Atkinson 

(Rockingham Superior Court, New 

Hampshire, Oct. 30, 1984, Case. No. E-36-

80). 

29 
Financing of Community integration Models 

by Vincent D. Pettinelli, ACSW, FAAMR President and 

Director 

VOCA Corporation 

Columbus, Ohio 

VOCA Corporation is a privately-held 

company based in Columbus, Ohio. We serve 

approximately 650 persons with mental retardation 

and developmental disabilities in three states 

and in the District of Columbia. Most persons 

whom we serve have severe and profound 

disabilities, and most persons are served in 8-

bed facilities or less. VOCA employs approximately 1,100 individuals, representing all paraprofessional and professional levels of service. 

We have been operating for 10 years. 

Prior to starting the company, I worked in 

South Carolina, Pennsylvania, and in Ohio in 

various state government positions. In South 

Carolina, I served as assistant superintendent and 

director of regional services and developed the 

first community programs in that state. In 

Pennsylvania I served as commissioner, and in 

Ohio I worked in a governmental and a joint 

governmental agency. So my early experiences 

were based in the public sector, and I believe 

I'm sensitive to the realities of public funding. 

Deinstitutionalization is becoming a reality 

in most States. Early costs associated with 

providing community care to persons with disabilities were substantively less than they are 

today. Why? Because earlier, the persons who 

were exiting State facilities were more mildly 

handicapped and could be served for fewer 

dollars. Today, as more and more persons are 

exiting State institutions with more and more 

severe disabilities, the true costs associated 

with providing those community services are 

approaching the levels of costs associated with 

providing institutional care. Why? First of all, 

sites are small and scattered. Small, scattered sites 

are more difficult to manage than large 

facilities. Second, there are specialized habilitation needs of individuals with dual diagnosis or 

substantive handicaps. These are also specialized 

day program needs. Not only must a provider be 

responsible for the services that are in the facility, 

but he or she also must be responsible to assure 

that the services provided in day treatment 

programs are, in fact, meeting the same standard 

of quality. There are specialized transportation 

needs — wheelchair lifts, the kinds of 

transportation needs that accommodate people 

with special handicaps. There are special 

medical and dental interventions as well. 

And there is liability insurance coverage. 

Ladies and gentlemen, I pay $360,000 a year for 

liability insurance coverage. When the persons 

we serve were in State facilities, there were not 

costs for liability because most states have 

sovereign immunity. In order to sue a state, in 

those states that allow you to sue them, you have 

to go through such a cumbersome process that few 

people ever make the effort. But providers today 

are easy targets for ambitious lawyers who are 

making a name for themselves in the disability 

area. We serve medically fragile individuals, 

individuals with special needs, and individuals 

who are easily victimized. The litigation in this 

area is soaring, and it's something that has to be 

addressed. 

I've known Arlene Kanter for a while, when 

I was in Pennsylvania; in fact, I think she's one 

of the people who made sure I was named in 

the Pennhurst lawsuit. The Mental Health Law 

Project is doing a great job. The point is, for 

those of us who are involved with zoning and 

other litigation, how many Arlene Kanters are 

there out there, that we can hire to help fight our 

zoning battles? Who will pay their fees? How many 

people who provide services have the 

wherewithal to hire attorneys to litigate all 

kinds of complaints that people have to deal 

30 
with, let alone the typical business issues of hiring 

and firing staff. We employed last year, and I never 

thought I'd do this, our own in- house general 

counsel. We are paying this person $70,000 a year, and 

he's excellent but if five or ten years ago somebody 

would have told me that I would have needed an 

attorney in my own shop in order to provide 

services to persons with mental retardation, I would 

have said they were crazy. The clear issue is that we 

are now dealing with the business of providing the 

services to individuals in the community, and those 

special needs cost dollars. 

The costs of competent manpower continue to 

escalate. Community providers compete with 

state, county, and governmental agencies in 

hospitals, nursing homes, and retirement centers for 

paraprofessionals, individuals who provide the dayto-day habilitation needs of the residents in these 

facilities. Paraprofessional staff is at a premium. This 

work is hard. All of us who have done it know it is 

not easy, and if you can't pay enough to where you 

force somebody to work at this as a second job, they 

come to work tired, they come to work disgruntled, 

they come to work unmotivated, and at the same 

time we're asking them to provide Active 

Habilitation. It can't continue. We must pay staff a 

living wage. 

Nurses. Everybody knows about the nursing 

shortage. The hospital down the road from my 

corporate office is offering a one-week paid 

vacation to the Bahamas, no fooling, for nurses to 

sign up to go to work with them. How can I 

compete with that? Plus, I'm asking nurses to take 

special training in dealing with persons who are 

handicapped. 

The O.T. and P.T. shortage is even worse. In 

West Virginia where we are just starting up 

services, we're having to literally find O.T. and P.T. 

professionals in other States and contract with them 

to come into that State to provide services — plane 

fare plus the special consultation rates. These are 

some of the special costs. 

Now let's talk about the revenue. 

Most States set reimbursement rates with little 

regard to client functioning level or to individually 

determined needs or to market rates. What are the 

differentials in costs in Washington, D.C., 

Columbus, Ohio, Wheeling, West Virginia, and St. 

Louis, Missouri, for the same type of individual 

that's going to be sought after by a myriad of other 

health care providers? And it's going to get 

worse. As health care providers expand with the 

AIDS epidemic and other services proliferating 

year after year, not only do we have a manpower 

shortage, but it's clear that providers who can pay 

the most are going to get the best staff. Most states 

increase rates each year by adding 

dollars to prior year reimbursement rates. The 

assumption, of course, is that last year was okay. 

Well, if last year wasn't okay and you've got an addon to what was deficient in the first place, what 

you've got is something that's a little less deficient 

than it was the year before! 

The difficulty in attracting high-qualified staff 

results in high staff turnover for many of us. In some 

facilities, we've had staff come to us and say, "we 

haven't had the kind of raise we know we deserve in the 

last two or three years. Other people want to employ us. 

We're going." People are leaving the field in droves. 

When I was a young kid in college in the 1970s, there 

were a lot of people who were my colleagues who 

wanted to get into the human services business. I 

dare say there are very few people at Harvard 

Business School thinking, when I get out, I'm going 

to go into the residential services business. That's a 

problem. It's something we have to address. We have 

to get the best talent to solve the myriad of 

problems that exist today. The field is a lot more 

complicated now than it was 10 or 20 years ago. 

We all applaud the strict application of the 

Medicaid regulations. Surveyors are requiring more 

and more. Federal look-behind surveyors are coming 

in asking for more and more documentation. 

Delivery of services today, all across the board, 

is more expensive because before, we didn't provide 

Active Treatment. Before, we didn't provide 

Protective Oversight. Before, the conditions that 

existed, in people being shut away in institutions for 

years and years, didn't matter to a majority of the 

population. Now that persons with mental handicaps 

are part of society, people are demanding better 

services. Who will pay for those services, and how 

much are we, in society, willing to spend? 

The challenge is to provide funding agencies with a 

system by which we can justify reimbursement based 

on assessed individual needs. We also need to hold all 

providers of service accountable to meet those needs 

and, at the same time, provide the fiscal resources 

necessary. Our company has developed a simple, 

easy-to-understand instrument which profiles an 

individual's needs via his or her habilitation 

requirements. We match needs to the staff necessary 

to provide services and the support services necessary 

for those staff individuals to do their job. We then 

apply that fiscal data, which assures that the needs 

are going to be met, by valuing reasonable market 

prices within the area where the service is being 

provided. 

This is how it works: Referring agencies fill out a 

profile form on each individual they refer to us. That 

profile form includes things like

31 
functioning level, including the level of mental 

disability, and adaptive behavioral problems, medical 

data identifying the special needs of that individual 

for medical supervision, the individual's ability to 

communicate expressive and receptive language 

documentation is made, the level of competence to 

perform self-help tasks with or without assistance. 

This is real important when we're talking about basic 

staffing ratios to provide habilitative services within the 

units. If an individual needs one-on-one staffing because 

of the level of his or her disability, in order to be safe, 

in order to be habilitated, then that's what the person 

needs; no more, no less. It's that simple. If a person 

needs special interventions of an orthopedist because 

of a bone abnormality that needs special attention, if a 

person has a specialized respiratory problem, if an 

individual needs special dental services that can only be 

provided in an extraordinary dental environment, then 

those costs are documented. 

Challenging behaviors may be present, including 

self-injury, Pica, aggression, unauthorized leave, 

property destruction, and self- stimulation behavior. 

Obviously, the goal is to extinguish those behaviors as 

quickly as possible. It can only be done with 

consistent staff attention by individuals who are trained 

in the technology of providing those services. Taking 

someone off the street and saying, here you are, this is 

your job, is not enough. We have to demand a level 

of service, a level of accountability on the part of the 

persons who are working for us, and we also have to 

remunerate them for their work so that they can take 

pride in what they are doing. 

We also document the types of intervention that 

have been used and their effect. What's been tried 

before and what's worked. Typically, even in the worst 

conditions, there are individuals who have been 

working with persons who have had a lot of 

successes. We talk with paraprofessional staff from the 

referring agency. Tell us what happens when the 

behavior occurs, what have you noticed, what kinds 

of things don't work and what kinds of things work 

best? Those strategies help in the transition from 

institution to community residence or from larger 

facility to small facility, from small facility to semiindependent living. We strive to smooth that transition 

for each individual. Now, that's habilitation!! That's how 

people learn skills, by the intervention of those particular strategies on a consistent basis. If a person needs 

special O.T., P.T., psychological services, psychiatric 

services, speech services, those are also added to the 

required list. We determine whether those services 

are needed daily, weekly, monthly, or bi-monthly. 

If a person needs special assistance in transportation 

and mobility, that also begets a special needs area. 

Habilitation staff ratios when awake and when 

asleep. We can't assume that everybody sleeps at 

night, obviously. If people have patterns where 

they're awake at night, they need to have staff 

attention during that time. The fact that most staff 

don't want to work at night or it's hard to find staff to 

work at night doesn't mean anything if the resident, in 

fact, needs those services. 

To these data are added the cost of supplying the 

physical plant, equipment, and supplies. So what we 

have is a total per-day per-dollar amount needed to 

serve each individual who has been referred to us for 

service. We make a decision with the referring 

agency. The point is that we can't serve everyone 

with a fixed rate that's supposed to meet everyone's 

need. We just can't. And I think we need to bite that 

bullet, as hard as it is. What does it mean? 

It may mean that we can't serve everyone who is 

referred. It may mean that there are some people 

who don't get served because we know we can't serve 

them adequately. Anybody participating in the 

Medicaid program knows that you don't have the 

choice to not serve adequately because you lose 

certification. So the government is forcing us to be 

accountable, and I think any competent professional 

would applaud that kind of accountability. Parents demand it. Advocates demand it. And we need to demand 

it of ourselves. We must also be honest about the 

resources needed to be accountable. 

If assessed needs can be met through the 

application of sufficient revenues, as determined by this 

analysis, no one should ever be rejected for 

placement. Clients' needs have been documented. 

Needs have been coasted out. Funding agencies can 

justify each cost, and we've identified the resources 

that exist to meet each client's need. Programs serving 

individuals should meet all applicable standards. Whether 

they're licensing standards, certification standards, 

special local standards or whatever they are, they are 

fed into the matrix. The only variable under this 

system is the ability for each provider to deliver the 

necessary services. 

Accountability is a function of each provider in 

managing his or her own operation, since all have 

access to the same necessary resources to meet the 

documented needs. The ability to choose those 

providers who can deliver the best services allows us to 

have increased competition and to assure that the best 

people are providing the best services. Competition in 

this business is one of the things that can assure high 

quality. 

32 
Why? Because if everybody's getting the same level 

of resource, then you can attack or applaud each 

agency's ability to meet the documented services 

that they say they're going to be providing. If they 

meet it, fine. If they don't, they're gone. It's a hard 

way to look at it, but I don't know that we have a 

choice today in providing the plethora of community 

programs that we're developing. Under this 

documentation of needs system, the excuses for nondelivery of services disappear. Monitoring agencies can 

measure performance upon an agency's ability to 

deliver services. Poor providers can be driven out. 

Providers will have an incentive to expand, if 

they're good and want to expand and should 

expand. Competition will be stimulated. More 

providers will enter the field, availing funding 

agencies more choices. If all this occurs, services 

cannot help but improve. 

Government funding agencies have four 

possible options open to them now: 

A. Serve everyone with everything they 

need. 

B. Serve less than everyone with everything 

they need. 

C. Give something, less than everything, to 

everyone, 

 or 

D. Serve no one at all. 

Option C is chosen by too many. Expectations 

from regulatory bodies are not tied to resource 

availability. This is a dishonest approach. 

We have already committed ourselves to 

advocating for the rights of all persons with 

disabilities to receive the services that they need. 

True advocacy, I think, champions the right of 

persons to receive the resources they need to meet 

those needs. Under funded programs create fear and 

doubt amongst parents, guardians, advocates, 

professionals, and everybody who cares about 

serving persons with handicaps. We must recognize 

the problem and deal with it now. 

An action plan that I would propose is that each 

provider must first ensure that they are using the 

resources that they have efficiently. Waste cannot be 

tolerated, and should be underscored in any audit or 

inspection. If you're using government money, my 

philosophy is clear — your books are open, and 

you'd better be clear about meeting all the 

requirements that are imposed upon you. 

However we must also demonstrate how 

assessed client needs can only be met through the 

application of sufficient resources which ensure 

continuing compliance with all state and Federal 

regulations which, in turn, ensure continued funding. 

If clients' needs are not met and certificates and 

licenses are pulled, places will close down, 

therefore, affording fewer service available options 

for individuals than exist today. When the level of 

resources is insufficient to meet needs, we must 

demonstrate the negative effects on client services, 

the resulting effect of being incapable of meeting 

standards, and how continued funding is 

jeopardized, resulting in programs becoming less 

available We are advocating some legislation in 

the state of Ohio that takes a first shot at clientbased program funding. Our appeal to the 

chairman of the Senate Finance Committee stated, 

"Ohio has already lost millions of dollars in the 

closing of facilities that have become decertified; 

how many more are you willing to lose by not providing the adequate resources necessary to keep the 

ones that are open, open, and assure that the new 

ones that come up stay open because the resource 

availability is there." I'm not suggesting, ladies and 

gentlemen, that money is the only answer, but let's 

start from a common denominator. I'm not negating 

staff dedication. I'm not negating parent 

involvement. I'm not negating the client's 

participation in his or her program. Those are 

essential, but you've got to all start from a common 

denominator. And if resources cannot be met or we 

are constantly depending upon discretionary 

dollars coming as a charity to keep these types of 

on-going operations alive, I think we're kidding 

ourselves. 

The people we serve demand service 24 

hours a day, 365 days a year, for a long, long time, 

and they may not be in the same facility or they 

may not be in the same setting during their lifetime, 

but will probably be depending upon community 

resources to meet their needs for a long time to 

come, especially individuals with substantive 

handicaps, persons who always will need a high 

level of Protective Oversight. 

We have the technology to educate professionals, legislators, and government leaders about 

the validity of this approach and how increasing 

allocations of public resources can ensure 

increasing quality of care to the persons who need it. 

If we decide, as a society, that there is just not 

enough money to adequately meet everyone's 

needs, then we have a professional and ethical, and 

moral responsibility, to adequately meet those needs 

of the persons we do decide to serve. 

The vision for all of us, I think, is to assure 

that services that are in place are funded 

adequately. We need to celebrate and publicize 

our successes. We also need to attack the failures, and we need to self-police our own profession to make sure that only the best providers 

survive. We need to work together to develop 

33 
a full continuum of services so that people demand that the level of services currently being 

provided are expanded, even if that means tapping 

more resources. Those revenues have to be 

consistent, they have to be dependable, they have to 

be relied upon by people providing the services 

and, most importantly, the people who are 

receiving those services. 

 The vision is that once all services are 

funded adequately, parents, advocates, and persons with disabilities will demand that service 

opportunities be expanded. Consumers will demand that 

they be included in an expanded system that is 

accountable, that can justify the use of resources, and 

that is adequately funded to meet the needs of those 

persons it was designed to serve.

34 
Promoting Maximum Community Integration 

Through People 

by Peter "Skip" Sajevic 

Vice President for Policy 

National Association of Private Residential Resources 

St. Paul, Minnesota 

II. BEGINNING DEVELOPMENT. 

We have witnessed over the last 20 years a 

growing and continuing effort to expand and to 

enrich participation and integration of people who 

are disabled in everyday community opportunities. 

Many of the people who are disabled benefit 

from services and support that facilitate a full and 

active community experience. Services and support 

have been developed to offer housing, education, 

employment, recreation and health care options. 

Many of us are excited about the successful 

development of creative service options and 

opportunities "tailored to individual need". 

Many of us are also frustrated that not enough 

progress has been made. 

WHAT HAVE WE LEARNED SO FAR? 

A. Models make people work 

Much progress has been made toward the 

protection of rights for people who are disabled, 

toward the development of safeguards and 

remedies as well toward the growth of resources 

and technologies. 

B. People make models work 

As more services are developed, they begin to 

espouse the same words, they begin to sound 

alike — 'tailored to individual needs.' People who 

are in primary contact or direct service breathe 

life into what otherwise becomes a cliché'. 

We believe that people develop best 

emotionally and intellectually from a secure base 

of interpersonal relationships. This is an unfolding 

process that occurs throughout each person's life. 

In addition, we believe that 1) all people have the 

ability to learn, 2) each person is unique, and 3) 

all people have the desire to be competent. 

CHANGING ROLES 

As the world of service and support 

expands to a broader range of community 

involvement and experience — a richer quality 

of life — for individuals who are disabled, the 

role of the person offering service and support 

changes not only in language but also in action. 

We introduce, accompany, enable, facilitate, 

mediate, advocate, guide, teach, modify as an active 

interaction and participation in another person's 

development. 

We build and develop relationships as a 

foundation for opening doors to further opportunities. 

The skills and attitudes involved in these roles 

may be considered more sophisticated than the 

skills required previously in the directed care 

environments and may require a new thinking in 

attracting and developing people with these 

qualities. 

The challenge to experience givers is to be 

sensitive to the whole person and to demonstrate 

a productive valuing that seeks expression, promotes 

and builds qualities of judgment, curiosity, a sense 

of humor and the appreciation of beauty. 

THE PROBLEMS 

A. Lack of Personalization of staff — the 

forgotten element in service delivery 

All too frequently, people who offer service 

and support are greeted with attitudes of mistrust, 

questioned about motivation, criticized for training 

and double-checked for judgment, intelligence and 

competence. 

35 
B. The distress signals are loud and difficult to 

ignore. 

1. Turnover rates are reported at 70% or 

higher which have traumatic impact on both 

the continuity of service as well as the 

stability of secure relationships. 

2. The average job tenure reported in the 

range of six to nine months demonstrates not 

only inefficient use of valuable resources, but 

also a nagging negative image of service 

importance. 

3. Service providers report a haunting fear 

that competent staff are not available in 

sufficient quantity. This has the effect of 

slowing and "braking" the creative energy 

necessary for more ambitious efforts. 

4. Services inherently impose significant 

demands and stress. To perceive a lack of 

support or more so a lack of trust 

compounds the stress for people performing 

on the direct contact level of service. 

5. The lack of connection or "team" — 

feeling alone and isolated — presents a 

major attitude for agencies to overcome 

when organizing in small, dispersed service 

sites. 

6. The expectations for job performance 

and training continue to grow yet 

compensation levels force competition with 

labor pools essentially targeted for unskilled 

personnel, i.e., fast-food. 

C. Marketing 

The message and appeal must be framed 

positively if services are to attract, recruit, 

retain and save valuable human resources. 

"Saving" versus "losing" motivated and 

competent staff implemented as a 

functional concept offers an exciting 

promise of long-term quality services. 

The message and appeal should promote the 

development of staff talents as a priority for 

ongoing growth and that training is a 

focus for self- improvement. 

D. Compensation – "Compensation Trap" 

Compensation rivals support as critical 

indicators of job satisfaction. Yet 

compensation levels generally are at 

embarrassing low levels—perhaps a result 

of the perception that people 

need not be paid for "what they like to 

do." 

There is no economy in low wages. 

When minimum wage and Department 

of Labor standards are forefront issues 

in service delivery, the signal of exploitation should be as clear to policy 

makers as it is experienced by many 

that deliver services. 

A quick scan of want-ads in most any 

newspaper would reveal compensation 

levels for most job "opportunities" to 

fall far short of poverty levels. 

A number of states are to be congratulated 

for initiatives of wage parity, wage equity or 

enhancement and comparable worth. 

VI. Recommendations 

A. Respect and Support -"PeopleCenteredness" 

The fundamental belief of our most successful 

companies is to treat individual employees as a source 

of quality with respect. 

There are infinite numbers of reasons why we 

should not trust, but this pre-occupation with maybe 

3% to 8% of the total people involved serves to 

discourage, reduce self-esteem for the people we want 

to participate. 

We motivate on what we think we can be — 

the potential — the possible. This seeking of possible 

gives breath to the future and substance to our own 

existence and uniqueness. 

To promote maximum integration and quality 

of life, we must seek people willing to demonstrate the 

courage: 

 of participation 

 of involvement on an individual level 

 of an openness to share one's own self by 

expressing one's own uniqueness, excitabilities, 

anxieties and enthusiasms as a process to assist another's 

development of personality and connection to life. 

If we can offer respect to individuals offering 

support and service it is more likely to encourage 

respect and dignity for people who are disabled — 

reciprocal people-centeredness. 

B. Enlisting the Partnerships 

1. Federal-State Leadership Message 

a. Recognize quality staff as important 

determiner of successful services — 

valued imaging. 

b. Send clear signals to educational and 

vocational systems that validate career 

opportunity and job importance. 

36 
c. Establishing compensation guidelines for career 

development. 

d.Develop a practice of linkage or liaison between 

agencies with overlapping responsibilities, i.e., 

Department of Labor, Housing and Urban 

Development, and Department of Health and 

Human Services to avoid conflicting practice. 

2. State-local 

a. Provide community education regarding 

service and job potential. 

b. Offer assistance to neighborhoods in how to get 

involved and what to expect from services. 

3. Public – Private 

a. Develop value-based criteria for service 

development. 

b. Cooperate in planning for staff development 

and staff opportunity. 

4. Family-service provider 

Recognize and expect the partnership 

necessary for quality service depends on 

accountable trust and communication. 

VII. SUMMARY 

A. Who gets helped? — Everyone wins with an 

opportunity to tap rich fund of human energy 

and potential 

B. How much does it cost? 

How do we estimate the expense of service 

breakdowns or disruptions? How do we value the 

unending cycle of training and retraining, of training 

and retraining. What is the cost of disillusionment and 

discouragement? A recent University of Minnesota study 

estimates the cost of staff replacement at $90,000,000 

annually. 

We can expend resources or invest in peoplepotential. 

37
Management of Transition into the Community 

by Marcia F. Hill 

Assistant Director 

Developmental Services 

Florida Department of Health and Rehabilitation 

Tallahassee, Florida 

I am very pleased to be here today to be able to 

discuss with you some of Florida's experience in 

transition. 

Transition in Florida can be viewed as a 

multidimensional concept and, depending upon where 

you are in your state in the development of 

community services and where people with mental 

retardation live, your transition plan activities will 

be very different. 

Transition at one level moves people: from an 

institution to a community program; from large 

settings to small settings. At a second level, there is 

transition that occurs within a program to improve it, 

focus it, and to keep it appropriate with current 

technology. And at a third level, there is the transition 

that all people experience as they move through life 

stages. 

What I would like to do this afternoon is 

share with you Florida's experience with all 

three types of transition as it relates to the 

development of community programs for persons 

with mental retardation and some suggestions on 

how to manage successful transition. These are 

suggestions based upon experience — not 

necessarily the experience of success, but also the 

experience of failure. 

The first level of transition is where Florida 

has had the most experience. Florida, as most 

states did back in the early seventies, began moving 

people out of state institutions into community 

programs. Many of these people were quite 

independent and were able to move into 

community settings easily. We set up what was 

considered to be model training programs in our 

institutions to teach clients how to live in 

communities. We were particularly proud of our 

institutional mini mall — a mall built in the early 

70's to replicate the real world. It had a bank, a 

snack shop, a library, a post office, barber and 

beauty shop and a small department store. We were 

so proud. Even the most innovative thinkers of us 

never thought to use what resources the 

community could offer. As we moved clients 

into the community, we had a fair amount of 

success and our share of failures. 

Until the 80's most of our community residential 

programs continued to serve people who were able to 

function with a fair degree of independence. Then 

due to a number of circumstances, the primary one 

being that the buildings were fire traps, the decision 

was made to close two of our institutions. These 

institutions housed about 1200 persons with severe/ 

profound mental retardation who were nonambulatory and had substantial medical complications. 

The closure of these two facilities was a huge 

undertaking lasting about 5 years and resulting in 

moving about 1000 people into smaller community 

programs. Most of these programs were called 

clusters. These were small ICF/MR facilities 

licensed to served 24 clients in 3-8 bed houses. In 

total, we moved clients from two institutions to about 

35 different programs all over the State. 

It goes without saying it was a management 

nightmare. I was a program supervisor in one of the 

districts where one of the institutions was located 

the same time we were closing this institution we 

were also under a legislative mandate to move 100 

persons with mental retardation who were 

inappropriately placed in a Mental Health facility — 

often into the same facilities. There were periods of 

time when I lost sight of the individuals' needs and 

thought in terms of compatible characteristics like 

ability levels, age and sex. Because we were under 

legislative mandates and working with providers 

who were only reimbursed when a client 

38 
was placed, logistical considerations were at times 

overwhelming. Weeks of placement planning had to 

be reshuffled when chicken pox broke out three 

days before transfer. 

What were some of the things we did to plan 

and actually accomplish this transition? Many things. 

We had some 12 different areas which required 

extensive planning. These were areas such as site 

selection, facility construction, license and 

certification, contracting and budgeting procedures. 

There are two main areas I want to focus on today 

— Staff Training and Individual Transition Plans. 

In the area of staff training we developed an 

extensive pre-service program for all levels of staff. 

Because we were moving persons with severe 

medical problems all over the state, we realized 

we had to provide an intensive training. We 

assumed, and correctly so, that many new 

employees would be inexperienced. We designed a 

three phase program involving 25 days of structured 

training. The most valuable part of this training was 

something we called practicum observation and 

demonstration, or PODS. This part of the training 

involved bringing the staff to the institution to 

actually work with the individuals who would be 

moving to their facility. Not only did the staff learn 

new skills but they got to know the individuals, who 

would be moving to their facilities and could learn 

about them from the people who worked with them at 

the institution. This was very important with this 

population who often could not communicate for 

themselves. Much was learned about individual likes 

and dislikes. 

Another thing that we did was to develop fairly 

elaborate transfer agreements on each individual to 

make sure that every last detail from clothing to 

medication to records to eligibility applications were 

handled. 

We learned a lot from that experience and we 

have continued to phase down our remaining four 

institutions. In 1986 we closed an additional 132 

beds, and in 1987, another 60 beds. Our experience 

with closure has helped us immensely in planning 

effectively for the actual movement of people. 

What has been our experience at the second 

level — that of transitioning within programs? We 

have been making steady, if not dramatic, progress 

in that area. Although I admit it hasn't been as 

impressive as our deinstitutionalization effort, in 

some ways it has a more significant impact on 

persons with mental retardation because it focuses on 

the appropriateness of programs. 

We have seen program transition in our day 

programs and in our residential programs. 

Day programs in Florida are called developmental 

training programs. In the past we have used a very 

intensive developmental model that taught skill 

acquisition and minimized vocational training. For 

persons who had been institutionalized for long 

periods or who had not been served in public school, 

this appeared to be appropriate. Developmental 

training programs often replicated 

home/community environments within their 

training facilities where housekeeping skills like 

making beds, cleaning dishes and cooking were 

taught. Programs were set up, data was taken, progress 

was tracked, and clients moved through a series of 

objectives. Rarely did we assess whether or not he 

did the things at home or ever would. Then one day 

we said to ourselves — does this make sense? — And 

gradually we have started to be more creative. 

We have begun to expand our training 

approach into actual home settings and into 

community settings. Money management is much 

more functional when taught in the community in real 

stores. Cooking skills are much more functional 

when taught in the kitchen where the individual 

lives. 

Transition of our day programs into work 

programs has been another area of transition in Florida. 

Five years ago, supported employment was a vague 

concept in Florida. Today it is a reality. By the end 

of June 1988, over 700 people who were in 

developmental training programs will be in 

supported employment settings. Moving from a 

center based activity program to supported work 

programs is not easy. There are many skeptics. There 

is a great deal of money invested in facilities. There 

are service providers and parents who don't believe 

supported employment will work. But it does and it 

will. 

We are also experiencing program transition in 

our residential services. Although we have moved 

persons with mental retardation from large 

institutions to community-based programs, we 

realize that many of these so- called community 

residential programs are, in fact, institutional. When 

shifts are used to staff a residential program, the 

result is an institutional operation. A slow transition 

is occurring in many of our smaller programs to 24-

hour staff. Although it has been difficult to recruit 

and maintain staff, those who have transitioned to 

this model feel a strong commitment to it. 

The third type of transition, that of the transition that 

people experience as they move through various life 

stages, is a concept that we in Florida have just recently 

begun to consider. We have talked a lot about 

programs for children, programs for young adults, 

programs for the elderly. With that, we discuss a 

continuum that we move people through. Just recently 

we have begun to think about the individual and 

39 
changing our programs to fit the various life stages or 

transitions that the individual experiences. We are 

beginning to view transition as we as individuals are 

experiencing transition. 

In Florida we have recently completed a fiveyear plan. As we developed this plan, we challenged 

ourselves to think beyond our current programs and 

technology. We focused, not on programs or funding, 

but on the individual and his needs — and what has 

emerged has been a philosophy and a fresh approach 

that looks at the individual in transition — not the 

system as it moves people — not the program as it 

struggles to change — but at the individual as he 

moves through life — like you and like me. 

40 
Presidential Forum: 

Citizens with Mental Retardation 

and Community Integration 

Recommendations 

Submitted by Marcia F. Hill 

Assistant Director 

Developmental Services Program 

Florida Department of Health and Rehabilitative Services 

1. The Medicaid Reform Act or similar legislation 

should be enacted. 

As individuals with mental retardation graduate from 

public school and transition into work settings and begin 

to participate in society as adults, some level of federal 

funding for ongoing training and support services is 

necessary. Currently federal funding for community-based 

services is limited to only a small portion of the 

population with mental retardation who live in the 

community. Federal funding for all individuals with 

mental retardation who need support to remain in 

community-based programs should be available. 

2. Programs for persons with mental retardation should 

transition as the individual moves through life stages. 

Too often program designs for persons with mental 

retardation have been conceptualized as a continuum 

through which the individual moves. Rather than moving 

people through programs, program designs need to change 

as the individual changes and moves through various life 

stages. 

3. Programs need to be functional and appropriate to a 

person's life stage, and provided in real settings. 

As we develop programs for persons with mental 

retardation we need to evaluate the functionality of the 

program and its value to the person. Training 

programs need to occur in real life settings and need to 

provide the greatest opportunity for generalization. 

4. Program change must be viewed as an evolutionary 

process. 

Program models for persons with mental retardation 

have and are continuing to change dramatically. As 

technologies are developed, it_ is important that 

programs change and adapt. Changing current program 

models is often more difficult than developing new 

programs. Model programs which are effectively 

dealing with changes must be identified. Their 

techniques must be studied for replication. 

5. The development of small supported living facilities 

should be promoted. 

The development of small residential facilities will 

eliminate many resource development problems 

associated with zoning difficulties and neighborhood 

opposition. Further, it will enable persons with 

developmental disabilities to live in natural 

environments. 

41 
PANEL SESSIONS 

February 4, 1988 

Living Arrangements 

Employment 

Transportation 

Education 

Recreation/Leisure/Socialization 

Family Supports/Respite 

Life Services Planning 

Quality Assurance 

Health Care 

Citizen Advocacy 

43
Living Arrangements Panel

MODERATOR: "HANK" BERSANI, JR. PH.D. 

 PANELISTS: JANICE C. SCHIFF 

 MICHAEL M. MORRIS 

 GAIL D. JACOB 

 JEAN W. POWERS 

44 
Community Integration for Children 

With Severe Handicaps?: 

Let's Be Practical! 

by Hank Bersani 

Assistant Professor 

Syracuse University 

Center on Human Policy 

Syracuse, NY 

The Center on Human Policy was founded by 

Burton Blatt in 1971. Since that time, we have been 

committed to the goal that he set down for us: "The 

promotion of open settings." For the past 4 years, we 

have been funded by the National Institute for 

Disability Rehabilitation Research to study the 

success of community integration for people with 

severe handicaps, and to develop policies to promote 

social integration. This paper will present some of the 

successes we have observed and the lessons we have 

learned based on our work across the country. Here is a 

partial listing of the variety of services and locations 

our staff has visited: 

 Institutions ranging from Fairview Center in Oregon; 

Cloverbottom State School in Tennessee; Bethesda 

Lutheran Home in Wisconsin to Hammond State 

School in Louisiana. 

 Group homes from Boise and Pocatello, Idaho, to 

Jackson, Mississippi; from Tulsa, Oklahoma to 

Nashville, Tennessee. 

 Family support programs from Macomb County, 

Michigan and Dane County, Wisconsin to Calvert 

County, Maryland. 

 Individualized supported living projects from 

Providence, Rhode Island, to Madison, Wisconsin; 

from the California Regional Center System, to 

Greeley, Colorado. 

 We have been to major metropolitan areas such as 

New York City, and Los Angeles, and to rural areas of 

Vermont and Murfreesboro, Tennessee. 

This paper was produced through the Research and Training Center on 

Community Integration, funded by NIDRR (Cooperative Agreement 

G0085CO3503). The opinions expressed herein are solely those of the author 

and no official endorsement by the U.S. Department of Education should be 

inferred. 

 Quite a variety of settings, and quite a bit of travel 

in 3 years; we have gathered practical information about 

real people, living integrated lives in communities across 

the country.

As a result of our travels I have a list of 5 items to 

cover here: 

1) Basic principles of community integration. 

2) A policy statement in support of families. 

3) Myths and facts about community 

integration. 

4) Characteristics of the Michigan system that promote 

integration. 

5) Recommendations. 

1. Basic Principles of Community Integration. 

These principles are a statement of values that we 

formulated with the assistance of consumers, families, 

and practitioners we have worked with. 

 People with developmental disabilities, 

including those with the most severe disabilities, 

should be served in their home communities. 

 The size of community living arrangements should 

reflect the scale of other homes in the area. 

 Community living arrangements should be located in 

neighborhoods populated by other people. 

 Services should support people to live in typical 

homes, work in ordinary jobs, learn in 

neighborhood schools, and play in community 

recreation programs. 

 Services should foster the development of relationships 

with other community members who do not have 

handicaps. 

45 
 Services should foster the development of 

practical life skills by using natural 

environments. 

 People with disabilities themselves, and their 

families should be involved in the design, 

operation, and monitoring of community 

services. (Adapted from Taylor, Racino, Knoll & 

Lutfiyya, 1986) 

2. A Statement in Support of Families and 

their Children. This statement reflects the 

lessons we have learned from families and successful 

services across the country. 

 All children, regardless of disability, belong with 

families and need enduring relationships with 

adults. 

 Families should receive the supports necessary to maintain their children at home. 

 Family supports should build on existing social 

networks and natural sources of support. 

 Family supports should maximize the family's 

control over the services and supports they 

receive. 

 Family supports should support the entire family. 

These statements are extracted from a longer 

policy statement by the Center on Human Policy 

(1986-87). 

3. Myths and Facts About Community 

Integration. In recent years, the concept of 

integration has been frequently misunderstood and 

variably defined. Some people say, "Our services 

are integrated ... we have people who are Black, 

some who are Asian ...” 

Still others say that "Our program is integrated 

because we serve people who are blind, physically 

handicapped, deaf ..." We have learned that these 

are a number of common myths about integrated 

community living for people with severe 

handicaps. Some of these myths are reviewed 

below along with our responses to those myths. 

Myth: Integration is an interesting theory, but it is 

just not practical yet. 

Fact: Community integration is a reality in 

many places across North America. In many 

communities, the children and adults with 

the most severe disabilities are being 

supported to live, learn, work, and play in the 

community. Some of the people with the 

most severe handicaps now live in the 

community, and the people remaining in 

institutions are not more handicapped than 

other people living in integrated settings. 

Myth: There is a "research-practice lag." 

This myth assumes that academics at 

research centers develop new ideas, 

and that those ideas are slowly transmitted 

to universities via professional journals. 

Then the information is transmitted to 

university students and finally "trickles 

down" to direct care staff, families, and 

consumers. In this myth, the "lag" from 

research development to practical application 

is estimated at 5-10 years. 

Fact: There is a "practice-research lag." That 

is, across the country there are 

innovative practical ideas being applied to 

offer people integrated lives. The lag exists 

because the practitioners, families and 

consumers involved in these innovations are 

involved in "doing it" and do not publish 

about it in scholarly journals. The lag exists 

because between the development of an 

innovative practice and the recognition of 

that practice by re-searchers may take 

several years. In fact, integration success 

stories are some of the best kept secrets in 

the field today. 

Myth: Community integration is an interesting 

concept, but realistically we cannot afford to 

implement it. 

Fact: When the full scope of social and economic costs of segregation are tallied, 

integration is something that we cannot afford 

to ignore. Among the costs that need to be 

counted include the market value of large 

parcels of land and the equity in large 

buildings currently dedicated to 

segregation; the cost of maintenance of 

specialized, segregated buildings, especially 

old buildings requiring massive expenditures 

to meet new standards. Social costs of 

segregation include the disruption of 

families, and the important cost of nonhandicapped children growing up segregated 

from potential friends, schoolmates, 

and roommates who happen to have a 

disability. In a recent review of nearly 100 

studies and articles about the economics of 

integrated and segregated settings (Bersani, 

H., Knoll, J., & Caruso, G., 1987) there was 

no evidence that congregated, segregated 

settings are more cost beneficial. 

Myth: Community integration is a good idea — for 

people with milder handicaps, but people 

with the most severe levels of impairment 

cannot be integrated. 

Fact: In many communities people with even the 

most severe impairments are already living, 

learning, working, and playing in the 

community. These include people 

46 
with G-tubes, T-tubes, apnea monitors, 

respirators, and serious behavioral 

challenges. Many of the people remaining in 

segregated facilities are substantially less 

disabled than those living integrated lives in 

nearby communities. 

Myth: Only "exceptional" families can cope 

with a child with a severe disability. Only 

"saintly" families will be adoptive or foster 

families for such children. We cannot count 

on them in sufficient numbers to meet the 

full need. 

Fact: The involvement of natural, adoptive, or 

foster families is not determined by the 

disability of the child. It is determined by 

the availability of natural and human service 

supports. Given the proper supports, every 

child can live in a family home. The 

greatest success nationally has been in the 

state of Michigan, and in particular, the 

Macomb Oakland service region. In that 

region, in the Detroit area, from a 

population base of 2 million citizens, only 

15 children are living in institutional or 

group settings. All the rest, including 

those with the most severe handicaps, are 

living with natural, adoptive, or foster 

families. 

4. Characteristics of the Michigan System 

that Promote Integration. When people hear of 

the successes in Michigan, or when they visit and 

see for themselves, they often ask several related 

questions: Why Michigan? Why now? How did 

they do it? After several trips to Michigan, visiting 

homes, reviewing records, and examining the costs 

of children returned to families from mental 

retardation institutions and specialized nursing 

homes, we have identified 5 characteristics of the 

Michigan system that promote successful, practical 

integration: 

Value Based Leadership: From the state 

offices to the counties, from the interdisciplinary 

teams to the accounting office, people have a 

sense of values that help set priorities. They 

understand that small is better, that children need 

families, and that short term savings may mean 

long term costs. 

Cultural Solutions: Staff looks to the 

broader culture for direction in problem 

solving. This is the source of the value placed 

on small size, families, and permanency 

planning. They do not ask "What should happen 

differently because this child is disabled?" 

Instead they ask, "What does this child need 

just like other children need?" That means 

living, learning, and playing in the community 

and having a family of your own. 

General Flexibility: The system bends, 

conforms, and responds to meet the needs of 

individuals. Individuals are not made to conform 

to program or facility demands. 

No assumptions are made that medical needs 

such as apnea or aspiration pneumonia require 

medical settings. Medical and therapeutic 

support services are made available to children in 

their family home and their own neighborhood. 

Selective Rigidity: There are some things 

about which there is no flexibility. Requests to 

place children in institutions are routinely 

rejected. Requests for children's group home 

placements are most often rejected. Proposals 

for indefinite foster care without a permanency 

plan are seen as unacceptable. Michigan offers 

a wide range of family settings and family 

supports, but settings that are needlessly 

segregated or unjustifiably large are rejected. 

Just as we have rejected orphanages for nonhandicapped children, Michigan rejects group 

settings based on disability. 

Comprehensiveness: Many locations in the 

country offer one or more of the features 

present in the Michigan system. No other state 

offers such a comprehensive array of supports to 

integration: 

 cash subsidy: families receive $250/month 

cash if their child meets disability criteria. 

 family support: families also qualify for a variety 

of respite services, in-home therapies, 

modifications to homes and vehicles etc. 

 permanency planning: a statewide system to 

arrange a permanent home for each child. First 

choice is for return to the natural home; second 

choice is for adoption, and as a third choice, 

placement in a permanent foster home. 

 focus on families: within the extensive range of 

community options, parents wishes are 

respected, and family involvement is promoted. 

Each of these features individually is important. 

Together they create a system to promote 

excellence. 

5. Recommendations. Based on our prointegration policy statements, combined with the 

practical success we have seen, several recommendations are appropriate: 

A. Formulate a clear pro-integration policy. The 

policy should promote full integration for all 

children regardless of their level of 

disability. 

B. Disseminate information about integration 

through the publication of a book of 

exemplary integration projects. 

47 
C. Formulate a new national deinstitutionalization 

policy. PCMR once set a goal for a 50% 

reduction in our institutional population. That 

goal has been met. The new policy should set a 

goal for total national deinstitutionalization by the 

year 2000. 

D. Urge Congress for Medicaid reform. The 

current Medicaid system is biased toward large, congregated, segregated 

services, and clearly discourages integration. A 

reversal of this bias could promote quality integration 

across the nation. 

E. Formulate a national family policy. This policy would 

state that all children can and should live with 

families, and that federal and state programs should 

make family supports their top priority. 

48 
Against All Odds: 

Partnerships for Residential Development 

by Janice C. Schiff 

Director, Residential Development 

Fairfax-Falls Church Community 

Services Board, Fairfax County, 

Virginia 

I'm going to change the title of my presentation to 

"Against All Odds: Partnerships for Residential 

Development." For those of you who know 

something about Virginia ... historically, the funds have 

not been flowing in Virginia for community residential 

programs. For several major reasons, the development of 

residential programs in the State of Virginia has been 

against all odds. 

Virginia has minimum participation in the Federal 

Medicaid program for Intermediate Care Facilities for 

the Mentally Retarded. There are only 200 

community ICF/MR beds in the State. There is no 

Medicaid waiver. Virginia ranks well below the national average in per capita funding for 

community services for mentally disabled persons. In 

fact, in 1985, Virginia ranked 44 out of 50 in per capita 

funding for community residential programs for 

persons with mental retardation. Virginia is also the 

State of the well-known Omega case ... 

the Virginia Supreme Court upheld a restrictive 

covenant in a community barring group homes for 

mentally retarded adults in single family residences. 

Despite all these odds, the programs that do exist are 

individualized and community integrated. I consider myself 

lucky that I had the opportunity to develop my work 

career in residential services for persons disabled by mental 

retardation. My husband and I opened the first group home 

in 1974 for the County of Fairfax. I have held various 

positions within Residential services in this County, and I 

am now in the position of Director for Residential 

Development. I am responsible for the development of 

a variety of residential programs for persons disabled by 

mental retardation, mental illness, 

or alcohol and drug abuse. I am regularly out in the 

community talking one on one with legislators, 

neighbors, Realtors, architects, and developers. As I 

prepared for this morning's presentation, my first thought 

was that I could spend some time talking about the 

headlines we've gotten recently in the local papers, like 

"Not in My Backyard,” or "Group Homes Fight for Acceptance." But I would rather spend my time sharing 

with you what we do to overcome those kinds of 

headlines. I will begin by talking a little about Fairfax 

County itself. 

Fairfax County has a population base of 700,000 

people, 12% of the total State population. The average 

four-bedroom house is selling at the current time for 

$214,000. There is a very low vacancy factor. The 

agency I work for, the Community Services Board is 

one of 40 Community Services Boards throughout 

the State. Our annual budget is currently at 

$35,000,000, 63% of which are local dollars, and 

only 18% State dollars; 14% are client fees and about 

4.8% is from Federal block grant fund. The majority 

of residential development in the last five years has 

been through creative use of local tax dollars. But 

today, I can proudly say to you, that all of the 

disability advocacy groups joined hands in the State of 

Virginia last year, and rather than competing against 

each other for State dollars, they formed a coalition, 

and in a very sophisticated manner have lobbied State 

legislators and this next biennium we anticipate receiving 

a significant amount of new State funding targeted 

specifically to community residential programs. 

In 1974 when we first started developing group 

homes, we envisioned this ideal continuum. We 

thought that all individuals with

49
mental retardation would somehow fit into this 

ideal continuum; that they would move from their 

homes or from the local training centers into group 

homes and then into their own apartments. Several 

years down the road, we discovered that after we had 

moved a certain number of people through the group 

homes and into their own apartments, there were residents who needed the group home level of support 

all their life who did not fit into this ideal continuum. 

We also were forced to realize that the funds were not 

flowing like we had anticipated; that we did not have the 

funds we needed to open additional group homes. Our 

waiting list mounted quickly and for the last ten 

years, we've had an ongoing waiting list of between 

200 to 300 mentally retarded individuals who need 

residential services. 

In 1984, our agency, after study and review, 

determined that we needed to focus energies on 

residential development. It was at this time that we 

created a residential development unit that I head. The 

mission was to leave no stone unturned, dedicate total 

resources to securing any kind of matching funds, 

develop any kind of partnerships, etc., to further the 

number of residences for mentally disabled citizens in 

our community. This was a significant move and I 

highly recommend it to any of you in attendance 

today who find yourselves in the position of being a 

program manager or supervisor and never having time 

to dedicate resources fully to development. When 

we created this new residential development unit, 

we also evolved a residential plan and a set of 

principles for developing programs. The salient 

principles we established included 1) the importance of 

home first and training and treatment as secondary 

supportive services; 2) whenever possible, move staff 

not residents; and 3) seek partnerships whenever 

possible, and within these partnerships, share the 

mission and resources to promote the development of 

community residential programs. This may involve a 

partnership with another public agency, a public/private 

partnership with parents or other non-profit organizations. We call it a multi-path approach to residential 

development. 

In 1984 when we began this unit, we had 37 

group home beds and 30 semi-supervised or supported 

residential beds in Mental Retardation Services. In 

1988, we now have 107 group home beds and 37 

apartment beds. The agency has set a goal for the 

mental retardation system to add 155 beds in the next 

five years. One avenue for expansion is through our 

local Capital Improvement Program. We essentially engaged in a social marketing campaign with other county 

agency staff and elected officials ... the message 

being that community residences for 

disabled citizens are as important as schools, 

libraries, parks, etc. We were able to evolve 

from a position of zero participation in the Capital 

Improvement Program to a position of $20,000,000 

for this year's advertised plan. 

 Another strategy is in the area of multi- agency 

collaboration, particularly with the Department of 

Social Services, the Area Office on Aging and the 

Department of Housing and Community 

Development. Again, through liaison, negotiation, and 

planned presentations, we are working with the Area 

Office on Aging to develop residential programs for 

senior citizens; we are working with the Department 

of Social Services in developing Licensed Adult 

Homes, which are funded through DSS auxiliary grants. 

We have developed special programs with the Office 

of Housing and Community Development to set aside 

public housing units for disabled persons. Another 

resource that we pursued successfully was the use of 

Community Development Block Grant finds for 

renovating houses to be used for group homes. 

The City of Falls Church, population base 9,000, 

is one of the jurisdictions with whom we work. 

Falls Church City serves as a role model for small 

cities in the use of community development block 

grant money to renovate houses to be used for group 

homes. They have been promoted in a recent HUD 

publication Case Study 86-2 July 1986. These CDBG 

projects are model community integration 

partnership projects. They had volunteer 

architects from the community donate the design 

work; free technical assistance was provided by local 

engineers; the City waived the building permit fees 

in order to facilitate this development; they entered 

into special negotiations with HUD to allow Section 8 

Certificates to be dedicated to these particular 

projects. The furnishings in the homes have been 

donated. Two of the homes are preservations of 

large old historic houses, and the one that they just 

completed this year was not only renovated in keeping 

with an historical design, but the entire downstairs was 

renovated to be barrier free. I encourage you to visit 

Falls Church City and see these group homes. 

Public/Private partnerships for residential 

development are another program that evolved from our 

residential development initiative. Three years ago 

through a Developmental Disabilities grant, we hired an 

Alternative Residential Coordinator for the agency and 

legal and financial consultants. Our goal was to set up a 

series of workshops for church groups, parent groups, civic 

associations, existing non-profit vocational programs ... 

any type of organization that might be at all interested in 

developing a community residence. We held a year long

50
series of workshops that covered a variety of topics ... 

including fund raising, incorporating, developing 

policies and procedures, hiring staff, etc. Several viable 

not-for-profit organizations evolved from this group. 

We have continued to work with them in a partnership 

whereby the Community Services Board funds 50% of 

their annual operation, and through family and resident 

fees and fund raising, they fund the other 50%, and 

provide the on-going management of the residential 

program. The County received an achievement 

award this year from the National Association of 

Counties for this initiative. 

I would like to end my presentation by posing the 

question to you, "What really makes for community 

integration for citizens who are disabled by mental 

retardation?" I think the answer lies in what feels good 

for the individual. In terms of a residence ... that 

might be a condo, living with family, or living in a 

shared housing situation with other disabled citizens. 

More important than the type of residence, what's 

really important is the feeling of belonging, acceptance, 

involvement and positive interaction with friends. 

In closing, I would like to focus on one of the 

goals of this Forum — to provide recommendations 

to the Secretary of Health and Human Services 

regarding the role of the Federal government in the 

promotion of maximum community integration of 

citizens with mental retardation: 

1. Increased allocation of federal housing funds for 

disabled citizens to localities which are willing 

and able to match these funds. 

2. Greater subsidy and flexibility with HUD 202 loans so 

that it is feasible to use these mortgage funds for five 

and six bed group homes with live-in support staff 

permitted at no additional cost. 

3. HUD low interest loan programs for family- run 

corporations or cooperatives who want to develop 

group homes for their own children (this is 

currently in violation of Section 8/HUD 202 

regulations, which mandate "open-participation 

waiting list.") 

4. Promote through media and literature the value of 

integrated opportunities for handicapped citizens; 

the People First Movement has to be a daily 

occurrence — not one week of dedicated 

recognition per year. 

5. Federal support to states for assistance to families 

who are caring for their disabled family member 

at home. 

I appreciate the opportunity to have participated in 

the 1988 Presidential Forum. 

51 
Implications of Federal/State Policy 

by Michael M. Morris 

Associate Executive Director 

Community Services Division 

United Cerebral Palsy Association, Inc. Washington, D.C. 

My role on this panel is to look at the implications 

of community integration in terms of Federal and State 

policy. 

It's always gratifying and enjoyable to watch a 

presentation such as the one that preceded me that 

shows people in communities whose lives have changed 

both as a result of the professional people around them as 

well as volunteers and other people who provide 

support and a different quality of life for people with 

severe disabilities. What I do on a day-to-day basis is 

try to think of ways that those types of things that happen 

in Madison and happen in Fairfax County and happen in 

other pockets of community excellence across the 

country can be translated into something that isn't just a 

matter of circumstance where one might live but is in 

fact an opportunity that is supported by a policy and 

law, by regulations and legislation. That's not always a 

very easy thing to do. 

All too often it's a minority of people, a small 

group of people working on policy change and 

legislative change that affects thousands and thousands 

of individuals and families across the country. And that 

isn't so great either. 

I think to put in perspective for you where we are 

today in terms of Federal policy, I'm going to ask you 

to assist me with what I call a diabolical design scheme. 

I want you to be the policy maker, whether it be at a 

Federal level, where you might chair a key Senate or 

House Committee and have control of making policy 

about the way we provide support to people with 

severe disabilities; or suppose you were a State 

Legislator or a Governor of a State, and you had the 

decision making power to establish a set of rules that 

would support people in situations like Madison, 

Wisconsin (Options in Community Living by Gail 

Jacobs). If you quickly took a few minutes, you 

probably could jot down about three to five points 

that you would like to see as key public policy to 

create and maintain the support, the nurturing of 

programs in your community that would benefit 

individuals with disabilities and their families. What 

I'm going to ask you to do, though, is to do the exact 

opposite of that kind of list. I want you to think about 

the development of the worst possible policy 

guidelines, the worst possible standards that we could 

create using our imagination, our creativity, our range 

of experience. Five points that would deter, that 

would set up barriers, that would diminish the ability of 

professionals, of volunteers, of employers, of housing 

officials, of governors, to provide appropriate support 

to persons with disabilities and their families. 

SUGGESTION: "A requirement that the only type of 

public funding available would support large residential 

settings." 

SUGGESTION: "Residential placement for persons 

with severe disabilities is done without consideration 

for service needs." 

SUGGESTION: "People should be kept with their 

own kind so that the convenience of the program is 

helped because they will be able to do the same things 

all at the same time." 

SUGGESTION: "Public policy would deny funding for 

any individuals between agencies." 

The reason this exercise is called a diabolical 

design is that all the points you made are in fact in 

some way embedded in either State or Federal policy 

today. So that even with all that we have going, the 

best of minds, the range of experiences, somehow 

we've managed to place into law what is the very worst 

rather than the very best terms of what we know

52 
about things that are going on in communities like 

Madison. It makes you wonder about how policy 

is made, who makes the policy, and about how 

policy is changed. 

I begin with that kind of exercise because we 

have a number of questions that need to be asked 

about Federal policy and I think many of these 

questions could also be asked about where we 

stand today in almost any state. If you were to 

review your state laws regarding community 

services or you were to review Federal policy, I 

would want you to ask several questions: One, 

does the particular funding source offer 

opportunities to increase and maximize 

consumer social and economic independence? 

Two, does the program support the individual with 

disabilities with opportunities for increasing self 

determination or the range of choices that 

maximize integration opportunities? Three, does 

the program provide services based upon individual 

need rather than what is currently available? Four, 

does the consumer, and when appropriate the 

parent, have a meaningful voice as a partner in 

decision making concerning program planning, 

operation and evaluations? Five, does the program 

seek to foster and maximize individual growth 

and development in an integrated setting? Six, 

does the program support rather than supplant the 

natural family? 

These kinds of questions are still not being 

asked by decision makers, by the people asking 

questions of decision makers, by the people 

who run programs, by parents and by the group 

that has the least amount of control at this point, 

obviously individuals with severe disabilities. 

If we were to look at changes that could be 

made in Federal policy, there are several 

considerations that would very definitely change 

the Federal policies that we have on the books 

today related to community services. 

First: Evaluate all Federal disability 

policy as to whether it promotes integrated 

opportunities. 

Second: Examine our Federal laws and 

regulations in terms of how much they continue 

to provide incentives to keep people dependent rather than offer opportunities to maximize 

individual potential, their potential for choices 

and their potential to become more independent. 

Third: Look again at our legislation, our 

current laws and policies, and recognize how 

much of it is still based on the medical model 

and how little has changed in terms of the need 

to recognize the family unit, and the social 

nature of program and supports for people 

with severe disabilities. Stop looking at facilities as 

the central focal point for the delivery of 

services and move instead to communities as a 

larger sense of support with both professionals, 

volunteers and others who can serve in a 

supportive role around people with severe 

disabilities. 

Fourth: Look at the emerging benefits of 

assistive technology as a way to maximize the 

potential of people with severe disabilities. We 

know so much more today about how to provide 

supports to people with severe disabilities with 

behavioral technology, learning technology, and 

assistive technology. We haven't refined public 

policy to ensure technology is accessible to all 

who need it. Augmentative communication 

devices, mobility systems, and environmental 

control systems, enable people with a range of 

impairments to be able to live more 

independently. Funding remains a barrier to too 

many individuals who have not yet benefited from 

technology related assistance. 

Fifth: We must move away from -looking at 

services, particularly adult services, as 

some type of privilege or some type of discretionary opportunity to be determined by others 

and move toward adult services as a right or 

entitlement. 

 And finally, Sixth: consider the whole issue of 

control versus empowerment. Who controls 

choices for people with disabilities? How much 

control is actually being allowed for people 

with disabilities, and what opportunities do we 

provide for them to become a part of the decision 

making team, whether that be in their individual 

program planning, the actual implementation of 

programs and services, or the evaluation of 

whatever systems that we have in place across the 

country? Persons with disabilities as the customer 

should be valued members of the decision making 

team. 

Obviously, there is a lot to be done in terms of 

where we are today with Federal policy, 

compared to what we know is really a State of 

practice that isn't so isolated any more. It's not just 

excellence in Madison, Wisconsin. In most every 

State in the country, we have pockets of 

excellence. We know the way to provide support 

in communities for people with disabilities but 

our funding streams continue to lag behind and 

our policies continue to create barriers to see that 

those practices become supported rather than 

discriminated against by Federal policy and funding. 

I would like to spend a minute or two 

with you, on two areas of legislation that presently or in the last year were before the Congress that relate to community living. The first 

relates to some comments made earlier concerning housing development policy. The funding source in housing under the Department 

of Housing and Urban Development that most 

53 
people are aware of is the section 202 program. It is a 

program that provides approximately $100 million 

annually in direct loans to nonprofit agencies across 

this country to develop new housing opportunities for 

people with disabilities, whether that be in 

apartments, in group homes, or in independent 

living complexes. As a side note, that particular 

funding source will only allow for development of 

housing in segregated settings and will not allow housing 

to be developed in any type of integrated 

opportunity. In any case, as was mentioned earlier, 

there are a considerable number of problems with the 

way HUD regulates the Section 202 program. 

Congress in the closing days in December passed 

Senate Bill 825 (P.L. 100-242) which is a major 

omnibus housing authorization bill, the Housing and 

Community Development Act of 1987. Why this 

legislation is so important for you is that it included 

major changes for the 202 program. 

For the first time the program will be separated 

from the housing development funds for people who 

are elderly. A separate set of standards, and a 

separate set of processing forms or application will 

have to go forward to be developed by HUD that 

recognizes the unique and specialized needs for the 

housing of people with disabilities. For the first time 

the fair market rents that are a part of the section 8 

program that couples with the 202 direct loan 

program is going to be eliminated. As was mentioned 

earlier, those fair markets rents don't work for small 

types of housing for people with disabilities. They 

were set up on a system that was really for the 

elderly. High rise apartments, with a typical project 

being seventy-five to a hundred units, did not translate well to the needs of persons with disabilities. 

Instead of the fair market rent structure under the 

section 8 system, there will be put in place a new 

system that will be based on reasonable cost; 

reasonable cost to be determined by the housing 

needs for people with disabilities. So for the first 

time HUD is going to have to really consider 

accessibility issues, it's going to have to really 

consider some of the staffing patterns that require 

additional space within group homes and apartment 

settings. It could mean a major breakthrough in the 

way this $100 million a year is going to be used in the 

future. It's something that I would urge you to watch 

for and read about and it could mean at least some of 

the barriers that have prevented the effective use of 

these dollars in the past will be overcome. 

I think many of you are aware of the Medicaid 

Home and Community Quality Services Act, Senate 

bill 1673 and House bill 3454. I would like to make 

three points related to this legislation. If you are in 

any way involved with people with disabilities in this 

The reason for my strong feelings about this 

legislation is that it will impact the use of the major 

federal funding source we have today that is 

providing services to people with disabilities. Special 

education on the Federal level is funded at 

approximately 1.2 billion dollars a year. Vocational 

rehabilitation on the Federal level is at a similar 

level of funding, about 1.2 billion dollars a year. 

When we discuss the ICF/MR program within 

Medicaid, we're talking about a funding source that is 

over 2.5 billion dollars a year in potential home and 

community services for people with severe disabilities. What this legislation will do is mandate a 

number of services. It will mandate community and 

family support services, specialized vocational 

services and a system of case management. This 

funding source could be one of the answers to the 

long term support needs of people now going into 

supported employment. It can be an answer to many 

families who need support at home, and would prefer 

support at home rather than to see their child leave 

home. It can be the answer to many adults with 

severe disabilities who are in need of attendants or 

personal care services to enable them to live more 

independently. It provides at least the beginnings of 

an answer to how we assemble the pieces as we try to 

get different agencies and different people to work 

together at a local and a state level. 

A final point for you to consider is that this 

is a presidential election year. I'm probably not 

going to have the time to go over it with you the 

way I'd like, but I have a political activism quiz that 

has 5 points to it. I'll just read over the points with 

you and I want you to think about it. (1) Any time in 

the last year have you written a letter to a member of 

Congress? (2) Any time in the last year, the last twelve 

month period, have you called a member of 

Congress or their staff? (3) Any time in the last 

twelve months have you visited with a member of 

Congress or their staff? (4) Any time in the last 

twelve months have a member of Congress or their 

staff invited you to talk with them about a particular 

issue that relates to people with disabilities? (5) Any 

time in the last twelve months have you had the 

opportunity to actually visit with a member of 

Congress or their staff at a local program that 

shows what home and community services are all 

about and why it's so necessary for this

54 
funding stream to become more flexible and 

provide more choices for people with disabilities 

and their family. If you didn't answer yes to each of 

those questions, you need to become more 

politically active. 

Persons with severe disabilities need each of us 

to become more apart of the political process. A 

change in public policy and a change in opportunities 

at the community level is dependent upon your 

political activism. Thank you. 

55 
Options in Community Living 

by Gail D. Jacob 

Program Director 

Options in Community Living, Inc. 

Madison, Wisconsin 

What is OPTIONS 

Options is a private, non-profit agency that supports 

94 people with developmental disabilities in their own 

homes in Madison, Wisconsin. Funding and services 

are provided through a contract with the local 

community board County based service delivery 

system. It began 13 years ago as one of the oldest 

supported apartment programs in the country. Support 

is individualized to meet each person's preferences 

and needs. The amount and types of support vary from 

person to person and can be anywhere from 24 hours 

a day to once a week. About 20 people require live-in 

support. Options provides training, case management 

and day to day assistance in helping people manage 

their lives. People live throughout Madison area. 

Values/Organizing Principles Which Guide Our 

Services 

A. EVERYONE HAS A RIGHT TO LIVE IN A 

HOME OF HIS/HER CHOICE IN THE 

COMMUNITY. NO PERSON SHOULD BE 

SEGREGATED BECAUSE OF THE NATURE 

OF HIS/HER DISABILITIES. 

We have a zero exclusion policy. Nobody is 

rejected based on the nature of his/her disability. 

People rent their own apartments. The agency 

doesn't own or lease any housing. 

We don't provide group living arrangements. No 

more than two people with disabilities live in any one 

home. 

Two ways of looking at how services can be 

designed. 

We reject the continuum idea because: 

 It puts the burden on the labeled person to earn 

his/her way through the system rather than on 

the community to provide the necessary 

support for people to live in their own homes. 

Having a home is a basic right. None of us had 

to demonstrate entry level skills to have one. 

 If people have to demonstrate mastery of 

skills, people with severe disabilities would 

never reach the end of the continuum. 

 The continuum idea wrongly presumes that 

what you learn in one setting will transfer to 

another. For many people who are labeled 

developmentally disabled we know that's not 

true. (Example: if you learn to use the stove 

in a group home, you will need to relearn on 

a different stove in your apartment.) Skills 

need to be taught in the environments where 

they will be used. 

 The continuum penalizes people for doing 

well. If you do well enough, you are 

rewarded by "graduating" to another setting. 

Often this means leaving your friends, 

neighbors, places where you feel a part of. 

The alternative to the continuum is a support 

model. 

 We start with the presumption that you live 

in your own home and whatever type of 

support you need is provided in your home 

and community- whether it's learning how to 

prepare a meal or assistance with bathing and 

personal care. 

 If your needs for support change, you don't 

have to leave; rather the intensity or type of 

support can be changed. 

56 
(Example: you may initially need someone around every day to help with 

meals. If one year later you can cook 

meals on your own, that type of support 

can be faded out.) 

 Services are not tied to a physical 

setting, but rather to the person. This is 

efficient. People get exactly what they 

need, not more or less which is often 

the case in group living arrangements 

when you're programming for 6 or 8 

people. 

 You don't have to ask your neighbors 

permission to live there. People rent 

their own homes like you and I would. 

 We challenge the notion of special 

places for people with "special needs". 

I would say the worst place for someone 

with challenging behaviors to be is in a 

group home with seven other people 

who have strange behaviors. 

B. PEOPLE WITH DEVELOPMENTAL 

DISABILITIES HAVE A NEED, 

EQUAL TO THAT OF ANY OTHER 

CITIZEN TO CONTROL THEIR OWN 

LIVES, TO MANAGE THEIR OWN 

AFFAIRS, TO MAKE THEIR OWN 

DECISION, AS MUCH AS POSSIBLE. 

We believe that the people we support are 

the best judges of their own needs and progress. They should not have to prove anything 

first in order for us to respect their rights and 

autonomy. Our role is to help them gain more 

control, confidence and competence with things 

that are meaningful to them. We can do that by 

helping people to understand and pursue their 

own choices and by providing opportunities for 

people to learn and try new things. It means 

being there to offer assistance and support when 

they have problems or make mistakes. 

Why is a consumer directed approach a 

good idea? 

 It builds self-esteem and self-confidence 

that carries over into all parts of a 

person's life. 

 It sends positive messages about the 

person to other people in his/her life and 

in the larger community. 

 It helps people learn, because when 

people define their own goals, they take 

more responsibility for achieving them. 

 It helps protect people's legal rights. 

 It creates growth-producing challenges 

and opportunities. 

 It produces "surprises" and fresh 

solutions where past attempts at 

changing people's behaviors have 

failed. 

 It allows us to assist people who insist on a 

higher degree of autonomy and will not 

accept needed help on any other terms. 

Translating principles into practice for people who have 

difficulty understanding or pursuing their own choices. 

 Many of the people we support who are labeled 

"severely handicapped" are very limited in 

their abilities to know what their choices 

are or what consequences might result from 

the choices they make. They are people 

who rely totally on others to make their 

decisions and structure their lives. It has 

been the most challenging to interpret our 

principles of consumer autonomy for these 

individuals. Some strategies that have 'worked 

for us: 

a. Providing opportunities to participate as 

much as possible in daily routines even 

when you can't be totally independent. 

b.Using technology and creative 

adaptations to support independence. 

c. Knowing people well enough so that when 

they don't communicate in typical ways we 

can understand their preferences through 

behaviors. 

d.Providing opportunities for choices and 

exposing people to a variety of options. 

C. PEOPLE WITH DEVELOPMENTAL DISABILITIES HAVE A NEED, EQUAL TO 

THAT OF ANY OTHER CITIZEN, TO FEEL 

ACCEPTED WITHIN THE COMMUNITY, 

VALUED FOR THEIR UNIQUENESS AND 

CONTRIBUTIONS, AND ABLE TO PARTICIPATE IN INTERACTIONS, ACTIVITIES 

AND MUTUALLY SUPPORTING RELATIONSHIPS WITH A VARIETY OF PEOPLE 

IN A VARIETY OF ENVIRONMENTS. 

 This principle relates to the importance of 

achieving a sense of community. We believe 

it's not enough for people to be physically 

integrated into the community and to be 

provided with an array of professional 

services. We feel our role is to assist people in 

becoming part of neighborhoods, churches 

and other community organizations, to 

develop natural networks of friends and family 

We assist people in using typical community 

resources rather than those that are segregated or 

"special". Examples are public transportation, adult 

education, 

57 
home health services and real jobs in real 

businesses. 

 We place a high priority on finding 

situations where people can contribute and 

where the focus is on people's capacities 

rather than deficits or needs. 

Key Success Factors 

 Small size. Decision to limit size of agency and 

number of people served. 

 High degree of individualization. 

 Strong value base. 

 High level of accountability to local 

community. Decision not to expand 

geographically outside of our county. 

Community leaders and parents on our Board of 

Directors, county supervisor is guardian of a 

person we support. 

 Shared values and mission with county and State 

government. Wisconsin very involved in 

Medicaid waiver to support individualized services. 

Implications for Federal Policy 

 Need commitment of funding to make 

community services an entitlement for all persons 

with developmental disabilities. 

 We need support of Federal policies which 

prioritize community integration and change the 

current Medicaid disincentives which promote 

institutional services and the medical model. 

 Federal policy should support local 

community control and accountability. 

 Need to avoid Federal mandates that are too 

prescriptive and over regulated. We're 

experiencing the down side of Medicaid funding 

with the waiver program. We're getting buried in 

paper. 

 Look for opportunities outside of professional services 

to promote community integration. The national 

cooperative movement is an example of people 

working together to build strong communities and 

citizen empowerment. 

58 
Striving for Excellence While Shaped by History 

by Jean W. Powers 

Administrator, Peppermint Ridge Corona, 

California 

Good Morning, I am Jean Powers, the Administrator of Peppermint Ridge, a spectrum of 

residential services, located in Corona, California and 

dating back to a family care home for six boys started 

in 1959. With me today is John Petrich, who lives in 

one of our coed homes about four miles away from the 

main campus of The Ridge. 

We want to share some of our experiences with 

community integration. We do not want to be 

simply defensive, a posture which is probably 

inevitable, but we want to contribute some measure of 

realism. I often wish we were not trapped by our 

history and by our bricks and mortar, but of course, 

to a great degree, we have been molded by where we 

have been and by what we have. On the other hand, 

our past and our buildings are not all bad. 

The Ridge started as a family care home, and we 

have never forgotten our roots of caring and deep 

personal involvement. Upon reflection, we see that 

relationships have proved to be extremely important 

in the lives of the people we serve. Some peer to 

peer, resident-staff relationships are 10, 15, 20 and 

more years old. For instance, John and I have each 

been part of the Peppermint Ridge community 

almost 11 years. We have lived together through many 

experiences, crises and changes. 

The people of Peppermint Ridge see The Ridge 

as a caring, interdependent community, an extended 

family, a neighborhood within a larger community in 

which we participate intensely, sometimes with 

supports and sometimes independently. 

Our bricks and mortar, our facilities, are not totally 

negative either. We have a lovely main campus, built 

with the aid of PCMR funding in 

the early 70's and opened in 1975. While The Ridge 

campus was in the planning stages, it was considered stateof-the-art, because each home is essentially independent, 

meets safety requirements and is spaciously homey. 

However, before construction was completed, it was 

considered passé. 

Please allow me to describe the campus briefly 

so that you can picture the situation out of which our 

varied programs operate. The main property consists 

of five acres in a residential neighborhood. On the front 

2 1/2 acres are five separate homes, each housing 12 

people in single or double bedrooms, and each having 

its own kitchen, dining area, living room and recreation 

area. Three of the on-campus homes are licensed 

separately as ICF/DD-H's (small intermediate care 

facilities, habilitative), and the other two homes 

share a community care license with an 

authorization for specialized services. We have a 

number of patio areas, a pool, a mini-park and a 

building that contains offices, a classroom, a central 

living-dining area, kitchen and laundry. Originally, it was 

intended that more houses would be built on the back 

half of the property, but, of course, with the 

momentous change in the philosophical climate, 

that has never happened. Now, a large recreation 

field and a horticulture/nursery operation 

utilize that space. 

The campus blends beautifully in its neighborhood 

which contains three other clusters of homes — town 

houses and condominiums — for non-disabled 

people. (All three of these other clusters use our 

central living room for their homeowners association 

meetings.) There is also a retirement complex which 

only includes non-disabled seniors, because it does 

not have convalescent facilities. This complex 

59 
is brand new and considered to be the ritziest in the 

area. In other words, Peppermint Ridge is an integral 

part of a reasonably classy neighborhood. 

Incidentally, there is something I want to interject 

before describing The Ridge's other living 

arrangements. It is widely recognized that in the 

United States family style living is no longer the 

norm for adults in the general population. The 

majority of adults do not live in primary family 

arrangements. I dare say that few of us or our friends 

live in a house with our mothers, our fathers and our 

siblings. Last year my family's household included four 

generations with my father, my husband and myself, my 

daughter, and my grandson living under one roof. Is it 

not true that, in our society, most adults live with 

housemates other than their spouses and their 

children? 

Moreover, our main campus serves as a 

neighborhood, similar to the town house complex next 

door, within which people have privacy in their own 

living quarters and freedom to roam in a larger area. 

This allows our folks much more unrestricted 

movement and choice of relationships and activities 

than if they lived in a single group home in some other 

neighborhoods. The ways of living of these at the 

Ridge reflect some typical lifestyles which are not 

currently recognized by the philosophical determiners 

in the field of developmental disabilities. 

I would like to go on with the descriptions of

The Ridge's spectrum of living arrangements so that 

you can see how we decided to expand when it was 

apparent that we should not add any more residences to 

the main campus. Peppermint Ridge leases and 

operates three 6-bed houses scattered in the 

community. Two of these homes are licensed as 

community care homes and one is an intermediate care 

facility for the developmentally disabled-habilitative 

(ICF/DD-H). 

 Six years ago, one of these leased houses 

was a home for two gentlemen, each with profound retardation and a psychotic diagnosis as 

well. They came to our community directly from 

a state hospital which was closing its doors to 

people with developmental disabilities. This living arrangement for the two men provided one 

direct care staff person per shift with part-time 

administrative supervision. The men flourished 

in this situation, but the arrangement proved to 

be far too expensive for California's community 

care rate of reimbursement; so the men were 

moved into a home that had four women living in it and which became an ICF/DD-H. After 

a short time, one of the men could not be 

served safely in the six-bed home and was 

discharged to a larger ICF/DD. The other gentleman continues to live in this off-campus home, but 

he requires a one-to-one program during the day. 

Our friend, John, here now lives in one of the 

off-campus homes licensed for community care. 

When he came to Peppermint Ridge eleven 

years ago, he lived in one of the on- campus 

homes and later another which seemed more 

congenial. John's off-campus home is coed with two 

ladies and three other gentlemen living with him. 

Currently, this home has shift staff, because the 

live-in family that guided the home for three years 

moved away, and we were unable to find anyone 

suitable who was willing to share this home as a 

primary residence. Another problem I might 

mention in conjunction with John's home, as 

opposed to our on- campus homes, is that 

Peppermint Ridge finds that expenses for this home 

and the other off- campus community care home 

exceed the rate received by about $2,500 per month 

per home. 

Let me share a little of what John has told me 

about his living arrangement, what I have observed 

and what I gleaned from reading his records. 

John was offered the chance to move off-campus 

to Cypress Point when one of the men that used to 

live in that household needed to move back to the 

campus. That gentleman's ability to manage his own 

behavior had deteriorated in the family atmosphere; 

he had become very aggressive and expressed a 

wish to return to his old friends in his previous oncampus home. John was eager to move to Cypress, 

but his parents, and particularly his mother, were 

horrified. She literally cried and pleaded that John 

remain in the relative security of the Ridge 

campus. Nevertheless, John's whole interdisciplinary 

team decided that he should take the opportunity 

which was available. Reading John's old program 

plans makes it clear that John has benefited from 

his current living arrangement very much. Just three 

years ago we were working on reducing his temper 

tantrums from five times a week to two. Now, it 

has been six months or a year since he has had a 

real flare-up. His domestic skills, especially in 

cooking, have improved tremendously, and because 

of a running competition with one of his 

housemates, John has learned to do a fine job of 

mowing a lawn. That was a task that he always 

begged to do but quickly got off track and never 

used to complete. John's parents are still not fully 

reconciled to his situation, but they see how 

happy he is and how much more mature he is in 

many ways. 

Besides our licensed homes on and off the 

main campus, Peppermint Ridge has two 

vendorized programs in independent living for 

people who need some training, counseling and crisis 

intervention, but do not require 24-hour 

60 
care and supervision. These programs operate out of a 

small apartment complex in downtown Corona 

built for us by two parent couples. The hub 

apartment complex is typical of others in the area 

except that the garages have been adapted for 

meeting/training areas. Additional participants in 

these programs live in other apartments, duplexes and 

houses scattered throughout the community. 

In Ridgeway, the more basic of the independent 

living programs, training is offered five days a week 

in cooking, shopping, cleaning, budgeting, "working 

the system," social-sexual education, maintaining one's 

health, enjoying one's leisure, etc. It is likely that a 

young mother and her baby will soon be admitted to 

this program. 

The V.I.P. (Very Independent People) program 

is a follow-along service which is tailored individually 

to the minimum number of hours of training and 

support services that a participant needs. This 

program was created, because it was discovered that 

very few of the Ridgeway participants could survive 

successfully totally on their own after two years of 

daily training. Moreover, there were other adults for 

whom this minimum sort of assistance was crucial. For 

both these independent living programs, crisis 

intervention is offered at all times; the participants 

have local staff friends they can call on whenever 

necessary. Within these programs, we have had two 

couples marry, but only one or two individuals have 

graduated to total independence. 

So, you see, The Ridge offers quite a range of 

options in our community of about 50,000 people. 

The residential programming we offer is highly 

individualized even in a home in which twelve 

people reside. We try to provide the type and the 

level of programming that a person needs right 

where he or she lives. Sometimes, however, it must 

be admitted that the regulatory requirements of the 

person's living arrangement may be somewhat stifling 

or that the current level of dependency is too 

comfortable for all concerned and is fostered 

unnecessarily. 

Peppermint Ridge has long tried to offer some 

measure of stability and security to the people we 

serve. Our reluctance to evict someone is only 

exceeded by their own (and their family's) reluctance 

to be discharged. Nevertheless, people who live at 

Peppermint Ridge engage in a wide variety of 

daytime activities which offer a progressive 

continuum without their needing to move frequently. 

There are schools, adult education classes, community 

college programs, workshops, activity centers, 

supported work, both part-time and full-time jobs as 

well as senior citizens programs. Moreover, there is a 

lot of community integration both ways in that, not 

only do people from the Ridge participate in 

community activities and utilize community services, 

individuals and groups from the wider community 

participate in Ridge activities and utilize Ridge 

facilities, such as our pool, dining room, classroom and 

meeting areas. Ridge staff of all ages and interests do 

not relate just during on-duty hours. Many staff take 

their Ridge friends home for holidays and other visits. 

They bring their families and friends for visits, 

especially when there is an appropriate special event 

that has been planned by our Resident Council. 

Peppermint Ridge has a value system that 

undergirds everything that we do. (Please see the 

page following this article "Overall Purpose and 

Philosophy" which was adopted by our Board of 

Directors several years ago and which is stressed 

during each new employee's orientation.) You will 

note that our first guideline is that every human 

being is valuable and should be accorded dignity and 

respect. We believe that wherever people live, 

among the options The Ridge offers, is their home, 

and we are there to supply whatever supporting 

services of care and training are required. People who 

live at the Ridge are not pampered guests nor serfs nor 

patients nor students; they are fellow members of an 

extended family, fellow citizens in a common society. 

During new employee orientation sessions we 

also go over two organization charts. One is the usual 

type which indicates the lines of authority and 

responsibility, but the other one is called a 

"Philosophical Orientation Chart." On this one the 

residents, participants, trainees are placed at the very 

top, because they are the most important people in 

the Ridge organization. Just below them are the staff 

people who work directly with the participants on a 

daily basis. It is in the relationships between these 

two top groups of individuals that the real life and 

work of Peppermint Ridge goes on. All the rest of us 

are just there to make sure that those relationships go 

well and fulfill the purposes intended. 

 I do not want to leave you with the impression 

that I think Peppermint Ridge provides perfect 

living arrangements. We recognize many problems. 

We certainly do not always live up to the ideals we 

profess. Over the years, we have had some practical 

problems with our off-campus homes. John's 

household, called Cypress Point, has had to move three 

times since 1981 when it was first licensed. One 

landlord went bankrupt, the next landlord did not 

like the modifications that were required of us and 

gave us one month's notice causing us to select an 

inferior dwelling whose leaky roof drove

61 
us to the current house which seems quite 

satisfactory. Escalating fire and safety regulations have 

been expensive and have forced another household to 

move twice. In establishing a new home with the aid 

of a HUD loan we have been frustrated by the 

excessive delays and by the restrictions which forced 

us to build one twelve-bed home instead of the two 

six-bed homes we wanted to construct. 

Besides all the crises that occur when attempting 

to serve the needs of vulnerable people 24-hours-aday, 365-days-a-year there is, for us, the constant 

problem of being significantly under funded. In the 

California service delivery system for people with 

developmental disabilities, residential services are 

lowest on the totem pole in terms of dollars and 

esteem. Our host Regional Center is the most penurious 

in California's system, seeing The Ridge as a vendor from 

which services should be obtained as inexpensively as 

possible rather than as a provider of services needing 

moral and financial support as well as scrutiny and 

technical advice. Because of this under funding and, 

thus, the inability to provide the intensive staff ratios or 

supportive services necessary, we have had to 

discharge some people who lived there that we were 

longing to serve properly. To catch a glimpse of the 

scope of this financial problem, let me interject that it 

has been continuing for a long time. Rate increases 

voted by both houses of our legislature were vetoed 

two years in a row by our governor. In spite of 

prudent management and constant fund raising from the 

private sector, Peppermint Ridge has had to place its 

property up for collateral on a line of credit, and we 

are having to borrow large sums of money just to 

keep afloat. Inadequate financial support is our primary 

problem that leads to many others. 

The repressive and regressive system under which 

we operate penalizes us by reducing our 

specialized services payments when the people who 

live at the Ridge make progress. I have already told you 

that the six-bed off-campus homes lose more money 

than the on-campus twelve-bed homes, and our 

independent living skills programs cost $13,000.00 more 

to operate last year than we were reimbursed. 

The biggest problem with being under funded is 

that the people who reside in the Ridge may not receive 

the quality and quantity of services they require in the 

least restrictive setting. The second most serious aspect 

of the situation is that our staff is underpaid causing 

some unnecessary turnover and, in my opinion, some 

exploitation of the people who work the hardest in the 

system. 

On the other hand, because Peppermint Ridge is a 

non-profit organization without adequate operational 

support from governmental sources it does exemplify 

all of the partnerships that this Forum is considering. 

There is Federal, State, regional and local 

governmental and agency involvement. Our publicprivate partnership includes many diverse individuals, 

groups, corporations, churches, etc. Naturally, families 

are true partners with us in the service delivery 

system. Families are often heavily involved in the 

original placement at The Ridge. All are invited to 

participate in our Parents' Group and individual program 

planning meetings. Those who can afford to do so 

donate regularly to Peppermint Ridge. It takes all the 

partners we can muster to keep The Ridge alive and 

thriving. 

I am well aware that Peppermint Ridge is not the 

perfect model of living arrangements with the ultimate 

in community integration. Because of this and the 

constant struggle over substandard support, I 

sometimes get a little paranoid and think that outside 

forces are trying to eliminate The Ridge and all the 

hard work, love and voluntary support that have been 

invested in it. However, when I observe people who 

are happy and progressing, and think about some of the 

less desirable living arrangements which might be 

provided as alternatives, then my determination to 

do everything in my power to ensure its survival is 

strengthened. 

To finish our presentation I would like to share a 

story that reveals the character of the Ridge 

community. 

Included in our extended family is a young man, 

now 26 years old who came to the "old" Ridge when 

he was 7 going on 8. He had been relinquished at birth 

and Maintained in a series- of foster homes until that 

time. He had been confined to a bed or a playpen and, 

thus, could not walk. Our staff was told that he would 

not live to adulthood. Jo had a cleft palate 

(untreated), was hearing impaired, non-verbal, and has 

an extremely serious lung and heart problem. The 

Ridge arranged for surgery on his palate, taught him to 

walk, provided him with a hearing aid for each ear, 

trained him in sign language and some speech and 

keeps an oxygen tank at the ready for when he 

becomes cyanotic. An elderly couple has voluntarily become adoptive grandparents for Jo providing him with 

many gifts and frequently visiting with him. Staff 

frequently takes Jo home with them. One staff family 

took him home so frequently that he was able to 

complete preparations for his Baptism and First 

Communion in their church. Jo is one of the most 

loving and lovable persons I have ever known. 

Jo has been living in either A Home or C Home 

on the campus since it opened in 1975, 

but last Friday at our admissions committee

62 
meeting I suggested that we all consider his moving 

into one of our ICF/DD-H homes on campus, 

because they will soon have an opening, and that 

home has people who require a great deal of staff 

assistance with their challenging behaviors and their 

intense deficits in self-help skills. Since Jo is so 

adaptable and adorable, I thought he might provide 

some relief to the staff in the prospective home. 

However, later on that day, the Program Specialist in 

charge of A and C Homes left me the following note 

which forestalled any movement attempts on my part: 

"Dear Jean — 

"I want to tell you how I feel about the 

suggested move for Jo now that I have had a chance 

to think about it. 

"First, let me defend myself. I know when I say this 

move would not be in Jo's best interest, 

I also know it would not be in my best interest, because I 

love Jo! But I've let other clients go knowing that the 

move would be best for them. In Jo's case, I don't 

believe this is true. 

"I have to refer to A and C Homes as one when I 

speak of Jo, because even before I came, he moved 

between the two. He thinks of these as home, 

because for him it is his only real home. We, the staff 

and clients, are his family. Norma, Lee Ann, June, 

Mary and myself have a combined 50 years with him! 

Even if we discussed a possible move for Danny, our 

other parentless client, I could see the advantages of 

growth and development for Danny. But it's not in 

Jo's future to live the long life we hope for Danny. I 

and the other staff have helped and loved Jo through 

some very low points in his life. We also want to 

love and help him when it comes to death. I hope you 

don't think 

I am being dramatic, but the thought of him being 

somewhere else when this happens is unbearable. I 

realize when his health regresses, he may have to leave 

the facility. But until that happens, I think he would 

want to be with "his family." 

"I realize that each on and off campus home has 

loving and committed staff people. I know they would 

love Jo. And maybe I am asking this as much for 

myself and my staff as for Jo. But Jo is a special case. 

"Even though we don't discuss it often, we know 

that he won't live as long as our other clients. His 

doctor reminds us each time we visit. Jo is so 

happy with his loved ones in A and C Homes. Each 

morning and evening he visits A Home to say "Hi" to 

his family. When (if) he moves to A it will be as 

natural for him as changing bedrooms in the same 

home, because they are family, too. 

"Thank you for being willing to listen —. 

Gale" 

Thank YOU, too, for listening. 

Peppermint Ridge 

Overall Purpose and Philosophy 

The primary purpose of Peppermint Ridge is to 

provide care and training — lovingly, expertly and 

with respect — to each and every special person in 

our charge. 

The entire Peppermint Ridge organization is guided 

by an under girding philosophy: 

A. All human beings are valuable and should be accorded 

dignity and respect. 

B. The life styles of persons with special developmental needs should be as normal as 

possible, and they should have maximum control 

over their own lives with the right to pursue their 

individual preferences and desires, and the 

satisfaction of their needs. 

C. Since persons having developmental disabilities are 

especially vulnerable, care must be taken to protect 

their rights, health, safety and welfare. 

D. Every person has a capacity for development and 

should be encouraged to achieve his or her highest 

potential and greatest degree of independence and 

be allowed to experience the consequences of 

success or failure. 

E. Since a sense of belonging is vital to a person's 

well being, mutually enhancing bonds are nurtured 

between those who live and work in each Ridge 

home. 

F. Functional life skills which are critical to one's 

growth and survival should be taught gently and 

persistently. 

G. All people should have opportunities to 

experience faith, fellowship and service. 

H. People develop best with the least amount of 

restriction and the greatest possible beauty, 

comfort, happiness, love and security. 

63 
Employment Panel

 MODERATOR: WILLIAM E. PITTMAN, M.A., M.ED. 

 PANELISTS: DONNA D. DOERER 

 KENNETH J. SHAW 

 AARON J. PRERO, PH.D. 

 PAUL HIPPOLITUS 

64 
Public/Private Partnership Working Together 

To Provide Employment 

by Donna D. Doerer 

Former Regional Director, ARC/US 

National Employment and Training Program 

Seattle, Washington 

The topic of my presentation "Public/private 

partnership working together to provide 

employment" could also be subtitled "How to 

leverage your resources" or even "How to stretch 

the dollars". In addressing the critical needs facing 

both service providers and consumers today it is 

inherent that private enterprise and government be 

members of the same team. 

I would like to share my perspectives with you 

today utilizing the following format. First I will 

familiarize you with my own background so that you 

may have a better understanding of my viewpoint. I 

will define the term "partnership" and the concepts 

which surround a "working partnership". Then I will 

identify the roles each partner assumes with the major 

categories of public and private including their 

strengths and needs. 

Through projects and proposals I will illustrate 

examples of cost-effective and innovative methods of 

cooperative community efforts which focus on 

employment of people who are mentally retarded. 

Finally I will offer recommendations for increased 

facilitation of positive relationships with private 

enterprise. 

As I defined "partnership" I viewed this as the 

joining together of two or more forces for a 

common goal. I developed my approach towards the 

public/private sector coordination based on these 

premises for effective partnership: 

1. Understanding of the needs and forces which drive 

each player; 

2. Partners must be able to work together positively 

maintaining a relationship which avoids 

unnecessary conflicts; and 

3. The results should be respectful and oriented 

towards mutual benefits. 

An example of private enterprise utilizing 

partnership is the mutual marketing campaign 

advertising "Fly United Airlines and use your 

American Express Card". They both have an investment 

in each other's identity and products. 

I bring to you today the perspective and visions of 

an individual who has been in the field of mental 

retardation for twenty years. My background has been 

both in direct service as a teacher, counselor, job 

developer, and trainer and more recently as an 

administrator of employment and training programs for 

youth and adults with special needs. 

The ideas which I will present today are an 

outgrowth of my past five years with the Association 

for Retarded Citizens (ARC) National Employment 

and Training Program (formerly known as ARC-OJT 

Project). The evolution of the OJT Project into the 

National Employment and Training Program has 

paralleled the increase in supportive employment 

services for people who are mentally retarded. 

The ARC received a grant from the United States 

Department of Labor in 1966 initially to establish onthe-job training opportunities for people whose 

disability was mental retardation. This grant focused on 

four states as a demonstration of the potential of these 

individuals. 

In the period when advocacy was addressing the 

extensive needs and concerns of the many people 

still in institutions, the ARC-OJT Project emphasized 

community integration in the workplace. The project 

success is reflected in its continued financial 

sponsorship from the DOL today as well as its 

availability in all fifty states.

65 
Unfortunately national funding has not kept pace with 

the market for on-the-job training and additional support 

services for this population. With the Education for All 

Handicapped Act, Supported Work Initiatives, and 

emphasis on returning individuals to the community who 

have been institutionalized there is a growing gap 

between needs and resources. 

The ARC's national program established regional 

offices throughout the United States. Today there are 

ten regional offices who serve surrounding States. 

Each regional director serves as a link to employment 

and training opportunities within her/his region offering 

on-the- job training funding to employers who hire and 

train employees who are mentally retarded. 

This concept has been popular and effective 

particularly today in light of the increasing entrylevel labor market shortage. Regional directors have 

enhanced the initial DOL funding and services by 

developing local and state job development and 

placement programs. Due to the positive track record 

during the last twenty years demonstrating that people 

who are mentally retarded can be long-term, competent, and productive workers Private Industry Councils 

in many areas of the United States contracted with ARC 

to provide specialized employment and training 

services. 

My personal inclination towards the combination of resources has resulted from my involvement with the challenge of putting people to work. We knew we 

had a good "product" or "service" based on our 

history of over 70% of our individuals satisfactorily 

completing the initial training and continuing employment. But the downside was the lack of 

sufficient existing resources through the normal social 

service channels. 

After initially conducting an analysis of our goals, potential strengths and limitations it was obvious that we 

could offer additional employment opportunities in competitive, community- based positions if we could 

find the monies to sponsor these activities. I assessed 

the following to be the elements in Private and 

public sectors identities: 

THE PRIVATE SECTOR: 

THE PUBLIC SECTOR: 

 Non-profits 

For-profit 

Community resources 

 Foundations 

Individual 

Organizational 

Business 

Government 

Public Schools 

Human services 

Services clubs 

Associations 

Corporate 

Small business 

Federal, State, 

County, Municipal 

K-12 system 

Community colleges 

Universities 

After recognizing the number and identities of our associates who were also involved in economic development 

and/or employment, I evaluated what each could bring to a partnership. 

PRIVATE SECTOR ESOURCES 

SERVE PROVIDERS: 

BUSINESS 

RESOURCES 

Creativity 

Training techniques 

Workforce 

Proven track record 

Job specific knowledge 

Jobs 

Contacts 

Profit basis 

66 

REQUIREMENTS 

Financial 

Technical expertise Labor 

market Opportunities 

Training techniques 

Personnel 

Opportunities Financial 

incentives 
PUBLIC SECTOR 

 FOUNDATIONS 

 GOVERNMENT 

 PUBLIC SCHOOLS 

RESOURCES 

Initial funding 

Influence for 

 change 

Legislation 

Initiatives 

Employment and 

 training programs 

Employer incentives 

Rehabilitation 

and vocational 

programs 

Training techniques 

Vocational programs 

Vocational funding 

REQUIREMENTS 

Projects/causes 

Opportunities 

Implementation 

Outcomes 

Employment 

Utilization 

Employment and 

 reduction in 

 "disability” 

 maintenance" 

 expenditures 

Successful applications 

Same 

Opportunities 

It became obvious that both private and public 

sectors could gain from merging resources which 

would as a result provide mutual benefits. From there I 

developed some possible combinations and scenarios of 

how this linkage could be applied. 

A basic example of joining resources across both 

private and public might have a private, non-profit 

organization (ARC, for example) which contracts with 

the local Private Industry Council. ARC could provide 

services through these federal Job Training Partnership 

Act (JTPA) dollars which would enable private business 

to hire and train workers who are mentally retarded. 

Through this approach all three entities — ARC, 

government, and business — would be bringing their 

assets to the relationship which would result in a win-win 

situation. To take this illustration to the next level we 

could involve the schools and vocational rehabilitation. 

While both are considered public they do not always 

interface as one serves primarily youth and the other more 

often adults. 

In a more involved partnership the public school, in 

its Individual Education Planning, involves the Vocational 

Rehabilitation counselor. The teacher, counselor, 

consumer, and parent focus on work experience in the 

community as a goal for the coming year. If the student 

becomes a client of Vocational Rehabilitation (s)he can 

receive a detailed vocational assessment as well as needed 

medical evaluations. 

The teacher can then program for the activity which 

would be in the best interests of the student. With the 

school district approval and backing the teacher could 

propose to start a community-based vocational 

program. Civic groups such as Rotary, Lions, and Civitan 

often sponsor creative youth skills-enhancement programs 

such as this. With 

grant funding the schools could hire a job-coach to train 

the student to ride the bus to and from work, learn 

appropriate work-related socialization, and acquire entrylevel job skills. 

There again the employer would be an obvious 

contributor as well as the beneficiary of the school's 

specialized training approaches and follow-along. The 

student would be connected to both the school and 

Vocational Rehabilitation effecting enhanced options 

both now and after graduation. 

In a final illustration which comes full-circle to the 

private sector initiation there is a complex utilization of a 

consortium of efforts. In this situation a company (such as 

Marriott) assesses its workforce needs and identifies a 

significant deficit in the area of sufficient entry-level employees. Fewer applications are being received and there 

is a greater turnover. 

As this company is aware of employer incentives 

such as OJT and TJTC, and has hired capable workers 

referred by the local sheltered workshop previously, the 

company contacts the workshop. The company states that 

there is sufficient workload to hire in the range of five to 

seven individuals in a single location. The workshop 

proposes to establish an enclave and to provide a 

supervisor from their own staff. 

The concept is acceptable to both parties but the 

administrative expenditures for staffing, payroll, and 

ongoing support are beyond the current budget of the 

workshop. The workshop negotiates with the county 

board for developmental disabilities to allocate funding 

to this community-based program. 

 After extensive planning and several 

months of operation the company finds that the 

67 
enclave workers are steadily improving productivity to 

the point where, on an individual basis, they can 

become employees of the company. To assist the 

workers in maintenance of skills and to provide 

ongoing technical assistance to the company the 

workshop proposes to the Developmental Disabilities 

Planning Council a research project which would 

fund "follow- along" for each worker. 

The DDPC provides advocacy and oversight to

each worker through federal monies. The company 

has continued to be an active proponent of hiring 

people with disabilities through the workshop as well 

as other private non-profit organizations. The company 

has given an endorsement at Chamber of Commerce 

seminars, merchant association meetings, and to colleagues. In addition the company prints the brochures and 

business cards for the workshop. 

This illustration ends here. Private enterprise 

accessing private non-profit workforce and State 

and Federal training resources to meet their entry-level 

personnel requirements. In actuality there are often 

many partners and creative mixes of resources in each 

situation. 

In Seattle, operational base of ARC's National 

Employment and Training Program Northwest regional 

office, the partnership must include a realization of the 

natural resources based economy and the geography 

in this region. Alaska, Idaho, Montana, Oregon, and 

Washington are currently served by this office. There is 

often a very different viewpoint on public sector 

involvement when there are more miles between 

people. 

Seattle is the largest metropolitan area in the 

region with approximately a million and a half people 

within the city and surrounding county. In 1983, the 

supported employment concept was already in 

action. The University of Washington, two 

community colleges, and private non-profit agencies 

who were vendors through the King County Board of 

Developmental Disabilities were providing placement 

and training to individuals who were previously 

considered unemployable. 

ARC approached the then newly established Private 

Industry Council of Seattle-King County to propose 

funding to offer specialized on-the- job training for 

participants who were mentally retarded and un-served 

by other JTPA organizations. The PIC awarded the 

smallest contract of $8,000 to ARC to provide OJT 

reimbursements to employers. 

Since 1983, ARC has continued to contract, on a 

performance basis, with the Seattle-King County PIC. 

One of the most recent contracts at the level of 

$90,000 enabled ARC to place 85 individuals into 

competitive employment within a single year. ARC 

partners with other community organizations such as 

Vocational Rehabilitation, Developmental Disabilities, 

University of Washington, workshops, parent and 

consumer groups to develop jobs, provide job and task 

analyses, transportation and on-the-job training. 

At this time ARC in the Seattle area is expanding 

to join with Vocational Rehabilitation and Marriott in 

its next venture. ARC will contract with Vocational 

Rehabilitation to provide referrals, screening, 

interviewing, coordination with Marriott, client support, 

and skills training. Marriott will sub-contract with ARC 

to develop and implement a customized training 

program. The end goal for all parties will be 

employment. 

In making recommendations for developing this 

partnership to the fullest extent I would urge that the 

public sector and private nonprofit service providers 

take the first step. We must be realistic in our vision, 

plan for appropriate timelines, and take the viewpoint 

of the private sector. We cannot base our approach 

from the expectation that each partner is driven by the 

same needs, but that there are common goals we share. 

We must establish our credibility, assess our 

service for its effectiveness, and restructure our models 

to merge with the profile of industry. We should 

develop our sponsors within business and access their 

contacts through introductions and references. We must 

speak to business in their language. 

Partnerships should be creative and not limited to 

one source. I subscribe to the viewpoint of stability as 

based on planned diversity. We will need to develop a 

game plan that incorporates many options. 

The role of the government, in particular the 

Federal level, must be one of facilitator. The legislation 

must enable people with handicaps and must respect 

the unique needs of people with disabilities as a 

sizable minority group. 

The Job Training Partnership Act has great 

potential to serve people with mental retardation. As 

an employment and training program focusing on 

individuals who are unemployed and economically 

disadvantaged this could meet a critical need for 

vocational resource for this population. There needs 

to be consideration, however, of the fact that people 

with handicaps are not mandated as a targeted 

population under this act. 

In many local areas it is difficult, if not impossible, 

for people with significant learning disabilities to 

enter JTPA programs. Frequently the Private Industry 

Councils set goals of over $5.00 per hour and 32 hours 

per week as the standard for each participant. This is 

not realistic for people experiencing characteristics of 

mental retardation who are entering the job market 

for the first time. 

68 
In addition, there should be a demonstration of 

strong support from all levels of government in regards 

to promoting employment in the public sector. This 

is still very limited in actual practice. I would urge 

extensive publicity and endorsement as well as 

incentives to government agencies hiring individuals 

who are developmentally disabled. 

Federal monies should be focused on practical 

applications including increasing financial incentives 

for employers and demonstration models that 

emphasize actual placement results, not research into 

feasibility. If the private sector is to be a true partner 

it will need to be involved in all phases of planning — 

from local operations to federal policy development. 

I will leave you with a phrase which the 

Association for Retarded Citizens utilizes in our 

approach to the private sector, from "mom and pop" 

establishments to offices at the corporate level: 

"It's Not Kindness . . . It's Good Business" 

69 
Supported Employment Within the 

Competitive Workplace 

by Kenneth J. Shaw 

Director 

Rehabilitation and Research 

Goodwill Industries of America, Inc. 

Bethesda, Maryland 

I. Supported Employment and the Rehabilitation 

Facility: 

Supported employment has recently become 

identified as a series of program models specifically 

designed for severely disabled individuals. The intent of 

supported employment programs is not different from 

the program traditionally provided within 

rehabilitation facilities. Both facility-based and 

supported employment programs intend: 

 To facilitate the placement of a person with 

a disability into remunerative employment. 

 To provide training in vocational skills appropriate to 

the local community labor market. 

 To provide identified follow-up services to 

maintain the individual in the job. 

The location of the services tends to be the 

major determination of the differences between the 

two programs. Facility-based programs tend to be a 

"place-train" model, which requires the identification of 

a community job, matching the individual to the job 

and providing the necessary training and support 

services at the employer site. Each of the models 

requires: an established positive relationship with 

business and industry, to facilitate placements; an 

understanding of the training needs of the disabled; 

the ability to identify and respond to service needs of 

individuals and to access auxiliary services for those 

served. These areas of expertise presently exist in 

rehabilitation facilities. 

Consequently, it is logical that rehabilitation facilities 

view supported employment as an extension of 

existing services and an alternative means of 

accomplishing their goals. Since supported employment 

programs (most of the time) offer funding, not 

previously available, to work with an individual at an 

employer site, facilities have taken advantage of the 

opportunity to expand services to existing populations, 

to facilitate movement into community employment 

as well as to new populations for whom traditional 

programs have not been available. 

Successful initiation of supported employment 

program models requires a strong partnership 

between the facility, funding agencies, individuals 

served, significant others in the client's environment, 

and business and industry. 

II. Supported Employment: Purposes and Models 

Supported employment is characterized primarily 

by the location in which the work occurs. 

Generally, in order for a program to meet the 

requirements of a supported employment program, the 

work must take place in community settings of 

business, government or industry. Supported 

employment programs require a cooperative 

relationship between the rehabilitation facility 

providing the supported services and the communitybased employer, who must be attuned to the needs of 

people with disabilities and committed to making 

appropriate adaptation and adjustments to 

accommodate the principles of supported employment 

models. 

The overall purpose of the supported employment models is to provide employment 

opportunities for people with disabilities. In 

conjunction with this, individual program objectives 

can be to upgrade the training opportunities for 

individuals and to expand the array of jobs that might 

be available. Additionally, objectives can include 

maintaining the individual's existing work skills and 

applying them in a real work environment. 

70 
The core elements of supported employment 

include providing real work in a community-based 

site and conducting training in a specific occupation 

which is offered by the community-based employer. 

Support services are also integral to the successful 

implementation of supported employment program 

models. The support service can take the form of 

counseling, assisting with transportation, money 

management, behavior modification, skills training, 

or any supportive activity required to assist a person 

in retaining a job. 

ADVANTAGES 

 Integration: The primary intent of a supported 

employment program is to enable people with 

disabilities to integrate fully with non-disabled 

counterparts in the workplace. This process helps 

the employer, as well as the community-based 

employees, appreciate the ability of people with 

disabilities to function in a real work environment 

and perform jobs that, in the past, may not have 

been considered appropriate for a special-needs 

population. 

 Real Work: The use of community-based 

employment programs has the advantage of 

offering the person with disabilities an opportunity 

to participate in a real work environment to work 

on jobs that actually exist in the community and 

skills that are readily transferred to other 

community-based employers. 

 Real Wages: In supported employment models, 

the community-based employer often will focus on 

paying the industry wage for work being 

performed even though the disabled person may 

not be performing at a competitive production 

level. Even if a commensurate wage payment 

system is used as part of the program, the 

individual has the opportunity to see how his/her 

wage is established in relation to that of nondisabled counterparts. 

 Focus on Outcomes: Community-based 

programs have the advantage of helping to focus 

the service provider on the primary goal: 

ensuring the client will move toward full 

integration and permanent employment. Client 

participation in the community-based job site 

ensures that the service provider keeps the 

overall goal of unsubsidized employment as the 

primary objective, and helps to facilitate the 

reduction of service and support activities to the 

individual on a structured basis. 

 Facilitates Movement: The opportunity for 

individuals to participate in real work in the 

community and to be held accountable for 

working at industry standards facilitates the 

acquisition of skills which assist the individual's 

efforts to obtain employment outside the training 

site. Since the procedures used for the training are 

generally transferable to other employers doing 

the same kind of work, it does provide an 

opportunity for the client to expand opportunities 

for employment with more than one employer. 

 Expanded Job Market: Using community- based 

employers provides areas of employment not 

previously available to facility-based trainees. When 

employment opportunities are provided in a 

community-based rehabilitation facility, the 

opportunities for employment are limited to those 

kinds of jobs available within the facility. By using 

the community industry sites, the options for employment are as varied as the array of jobs within a 

given community. 

Considerations 

 Establishing Role: In the development of any 

supported employment model, it is particularly 

important that the facility establish well-defined 

relationships with the businesses where the supported 

employment will occur. Written agreements covering 

all the aspects of the business relationship 

established between the facility and the business are 

critical to the success of the program. Additionally, 

the facility will have to be assertive in demonstrating 

concern for the safety of persons with disabilities 

being served in community- based sites. The facility 

needs to pay particular attention to the risks and 

liabilities to which the facility and the communitybased employer may be exposed. Insurance requirements should be explored prior to the 

implementation of supported employment 

programming. 

 Communication: Since the supported employment program usually will occur away from the 

facility's normal place of business, good 

communication must exist between the employer and 

the service provider, and between the management of 

the agency and its staff working at the communitybased site. Community-based service delivery staff will 

be responsible for establishing appropriate program 

objectives for the individuals served, as well as 

completing all required reports. 

 Client Concerns: Adequate supervision must 

be provided to ensure that the training and job needs 

of the individual are met. Support activities necessary 

to ensure that the individual will have the best 

opportunity for success at the job site must be 

provided. Additionally, concerns for full integration 

at the work site of the person with a disability must 

be addressed. At no time should the 

71 
difference between the workers of the establishment and the clients of the supported 

employment model be exaggerated. Care must 

be given to ensure that the role of the client is 

clearly established before the client is placed at 

the site. The definition of the role of the client as 

either an employee of the community business or 

as a client of the facility must be clearly delineated. 

Additionally, issues related to accessibility, not 

only to the job site but to individual jobs and 

upward mobility, would be reviewed prior to 

placement of individuals at the sites. 

MODEL FOR SUPPORTED EMPLOYMENT 

The following are the generally accepted 

models of supported employment in the rehabilitation community: work stations in 

industry/enclaves; mobile crew; and job coach or 

supported jobs. 

The bench work model of supported 

employment has, by design, been omitted from this 

list because of the inherent lack of integration. 

Characteristics Common to All Models 

 Real Work/Real Pay: Each of the supported 

employment models focuses on the idea that the 

individuals will be engaged in real work and will 

be receiving full pay for the work performed. 

The principles of commensurate wage payment 

are paramount in each of the models. It is fully 

expected that each individual engaged in the 

production of goods or services will be paid at least 

according to his/her ability to produce. 

 Community Integrated: Each of the models 

assumes that the individual will be placed in a 

community-based business or industry around or 

near non-disabled persons performing essentially 

the same type of work Each of the models, 

however, differs in terms of the level of 

integration offered. 

 Accrual of Benefits: It is assumed that persons 

engaged in supported employment models will 

obtain the same benefits as non- disabled persons 

doing the same type of work. The benefits here 

are not specifically financial, but rather 

sociological and psychological. People working in 

community-based industries will have the sense 

that they are contributing members of the 

workplace and society much like their nondisabled counterparts. 

 Ongoing Support: Each of the supported 

employment models assumes that supportive 

services will be offered on an as-needed 

basis to the person engaged in work at a 

community-based site. Although the level of 

 support and type of support services offered will 

vary according to the model and the individual 

being served within the supported employment 

model, each client will have some form of 

rehabilitation or support plan. 

 Employment Model versus Preparation Model: 

Supported employment programs generally 

assume that the individual will be placed in a job 

and then receive the services necessary to maintain 

that job or to upgrade skills for other jobs. This is 

in opposition to the traditional method of 

service delivery within a rehabilitation facility 

where people are trained how to be workers, with 

the development of generic skills to be applied 

to any work situation. It is felt by some that the 

specific support services given in this model are 

more vital and long-lasting than the training of 

job skills that may generalize to multiple types of 

employment. 

Choice of Model 

 Knowledge of Local Job Market: Before 

establishing any particular supported employment 

model, it is imperative that the facility become 

knowledgeable about the availability of 

employment opportunities within its local 

community. The establishment of the various 

supported employment models is dependent on 

the number, type and accessibility of job openings 

within the community and is affected by the 

employers' perceptions of people with 

disabilities and their ability to perform the work 

within the business and industry community. 

 Needs of the Individuals Served: Before 

establishing a particular supported employment 

model, the service provider or facility must 

understand the characteristics and needs of 

individuals referred to the agency. The various 

types of needs, including the amount of 

supervision required, types of training needed, 

transportation accessibility, etc., all have an 

impact on the type of model to be chosen for 

community-based programming. 

 Strengths of the Service Provider: The type of 

supported employment model that could be 

established is largely dependent upon the 

knowledge, skills and resources of the service 

provider. If a facility's staff members do not have 

any particular knowledge in the type of work 

offered by the employer, it would be difficult for 

them to establish certain types of employment 

models where they would be responsible for 

training as well as producing goods and services at a 

community- based site.

72 
Work Stations in Industry/Enclaves 

Definition: The enclave model features a 

group of individuals, trained and supervised, who 

work among non-disabled workers in a 

community-based work site. The communitybased employer provides the work, and the 

rehabilitation facility generally provides the 

training and support services. The enclave model 

is the most common model currently in use by 

rehabilitation facilities. 

Characteristics 

 Integrated Environment: This model integrates individuals with non-disabled, coworkers 

at the community-based work site. Although the 

enclave workers may be responsible for a portion 

of an existing job within the industry, they are 

working in the same geographic location as the 

host industry's workers and have access to all 

the common facilities. 

 Specially Trained Supervisors: The enclave 

model requires the training of the supervisors in 

the work to be performed as well as the 

rehabilitation support services to be offered to the 

individuals at the work site. The advantage of 

having the supervisors trained in the work is that 

it expands their field of expertise to ensure the 

client will be able to gain the skills necessary to 

perform the work appropriately. 

 Pay: Since the work will be performed at the 

community-based site, the client will have the 

opportunity to be paid on a level commensurate 

with his or her non-disabled counterpart for 

essentially the same type, quantity and quality 

of work. The regulations of the Federal 

Department of Labor will have a positive 

impact by ensuring that the pay rate is based on 

the wage being paid to the non-disabled 

counterpart at that work site. 

 Little Downtime: Since the work will be 

coordinated and provided by the communitybased employer, the likelihood of having 

insufficient work to keep the work force busy 

will be minimized, if not eliminated. Since 

most community-based employers have sufficient 

work to maintain their existing work force, and 

the enclave model simply extracts some work 

out of the existing work flow, it is assumed 

that clients will be able to work on a continuous 

basis. 

 Access to Company Benefits: In using the 

enclave model, the individuals engaged in work 

at the community-based business often will have 

access to the financial and social benefits 

provided to the regular work force. 

Opportunities to participate in social functions, to 

take advantage of medical programs, etc., will be 

enhanced by using this model. 

Continuous Supervision: Since the rehabilitation facility and the community-based 

employer probably will have staff assigned to 

monitoring the enclave program, supervisors will 

be available for both training and support 

services on a continuous basis. 

Accommodates Severe Disabilities: Again, 

since a combination of supervisors generally will be 

available, the opportunities for more severely 

disabled people to work is enhanced. Industry 

supervisors as well as facility staff, by combining 

their skills to design appropriate accommodations, 

can share responsibilities in facilitating the 

integration of the individual clients into the work 

force. 

Constraints 

 Skills Required for Supervisors: Since the 

supervisor of the enclave model probably also will 

be the rehabilitation specialist, a special 

combination of skills is required on the part of 

the staff. Staff members have to be skilled in 

acquiring and teaching job-related tasks, and must 

apply appropriate behavioral and supportive 

activities to assist clients in making the adjustment 

to work an effective one. 

 Lack of Tolerance of Behavior: Since the 

enclave will integrate the client into the work force, 

it may be that certain types of client behavior will 

not be acceptable to the host company. Certain 

types of behavior may be found to be offensive 

or intolerable on the part of other workers in 

the environment and, thereby, reduce the 

opportunities for employment of some 

individuals whose behaviors have not been 

appropriately normalized to function in a 

community-based setting. This is especially true if 

there are only one or two individuals out of a 

group who have inappropriate behaviors and if 

supervision is insufficient to give the personal 

attention necessary to ameliorate the identified 

problems. 

 Locating Host Companies: Locating host 

companies is a major marketing function, and an 

existing business often already lacks appropriate 

work space, so it may be difficult to find 

employees who are willing to participate in this 

model. 

Mobile Crews 

Definitions: The agency provides work 

opportunities by obtaining service contracts in its 

community and provides the support services and 

training necessary within community- based sites. 

73 
Characteristics 

 Van is Office: In the mobile crew model, the 

agency generally purchases a van to take the 

mobile crew to its various employment 

locations. In essence, the van becomes the 

facility's main office for conducting rehabilitation 

services, as well as offering transportation to 

employment sites. 

 Service Jobs: For the most part, the mobile crew 

concept lends itself to the establishment and 

offering of jobs in the service industry. These 

most often include janitorial and grounds 

maintenance types of occupations. 

 Frequently in Rural Areas: The mobile 

crew model has been most often used in rural 

areas where centralized employment 

opportunities do not exist for people with 

disabilities. Since the facility uses a van as part 

of its employment program, the transportation 

problems that are generally associated with 

providing employment in rural communities 

are avoided. 

 Continuous Supervision: Like the enclave 

model, the mobile crew model offers an 

opportunity for continuous supervision of severely 

disabled individuals. Consequently, people with 

severe disabilities have the opportunity to 

participate in employment with structured, 

ongoing and intensive supervision coupled with 

support services. 

 One Supervisor Per Crew: In this model, one 

supervisor works continuously with the same 

crew, thereby offering continuity of services and 

supervision to the clients engaged in the work 

setting. Consequently, if more than one crew is 

out doing community-based work, then the facility 

will have to have more than one supervisor and, 

generally, more than one vehicle for transporting 

workers. 

 Multi-talented Managers: This supported 

employment program model, like the enclave 

model, requires a multi-talented supervisor or 

manager. Essentially, the supervisor will be the 

coordinator of the rehabilitation services, as well 

as the trainer for the job and the supervisor to 

ensure that quality work is being performed. 

Unfortunately, it is sometimes difficult to find a 

person with all the skills necessary to provide the 

full array of services and support to a crew of 

disabled individuals in the community-based sites. 

Constraints 

 High Start-Up Costs: Generally, this type of 

work program requires intensive capital investment in items such as a van for providing 

transportation, as well as initial equipment and 

materials to do the work. Equipment may 

include things like buffing machines, floor 

scrubbers, cleaning supplies, cleaning carts, 

garden tools, etc. 

 Opportunities for Interaction: People involved in mobile crew occupations often are 

working in community-based sites when none 

of the normal work force is present. 

Consequently, the opportunity for interaction with 

non-disabled counterparts is severely limited. 

 Acceptance of Behaviors: When the mobile 

crew is involved in work in or around other 

workers in a community-based work 

environment, there is a reduction in the tolerance of 

deviant behavior. If the mobile crew is doing 

work when no other workers are present, then 

there is an increased ability to accept deviant 

behavior on the part of the work crew. 

Job Coach or Supported Jobs 

Definition: The supported job model places 

people in community-based employment with oneon-one training, supervision and auxiliary support 

being offered and provided by the rehabilitation 

facility. The community-based employer provides 

the work and the agency provides the job coach to 

assist in the acquisition of skills and appropriate 

behaviors at the job site. 

Characteristics 

 Service Businesses: Generally, the supported jobs 

occur in service businesses, since high turnover is 

an inherent characteristic of these occupations in 

most communities. It is not unusual, however, 

for agencies to find industry-type occupations that 

are willing to accept both the disabled worker and 

the job coach. 

Frequently Part-time: Unfortunately, many of 

the service-type occupations are offered only on 

a part-time basis, even to the non- disabled 

employee within this industry. Consequently, 

clients may only have the opportunity to learn and 

demonstrate appropriate work skills on a very 

limited or short-term basis, which tends to 

extend the program time necessary for worker 

competency to be developed. 

 Does Not Require Competitive Productivity: 

Especially at the beginning of a work program and 

with the available job coach at the employment 

site, the client can learn, at his or her own rate, 

how to perform the job and to increase his/her 

productivity level to a competitive standard. The 

job coach being available at the site offers the 

opportunity to ensure that the work is done at the 

industry's expected quantity and quality levels 

without putting undue expectations or pressures on 

74 
the individual until appropriate training and 

opportunity for practice has been given. 

 Can Accommodate "Severely Handicapped": 

Since an individual job coach is available at each 

site for each individual, this model can 

accommodate people with more severe 

disabilities. The job coach must have strong skills 

in behavior modification and management. 

 Support Fades Over Time: It is the intent of the 

supported job or job coach model that the job 

coach eventually fade away from the client and 

allow him/her to become productive on his/her 

own. Again, this requires strong training and 

behavioral management skills on the part of the 

job coach to ensure that each step of job training 

is fully understood and able to be performed by 

the individual client. 

 Focus on Individual: The job coach model gives 

specific and unique attention to each individual 

engaged in the community-based program. 

Consequently, an individual with many difficulties 

in adjusting to a competitive work environment 

will have access to the full array of support 

services necessary to facilitate the transition to 

the work environment. 

Constraints 

 Training Difficulties: A job coach often will 

be responsible for providing job coaching 

services at multiple locations or in different 

industries. Consequently, the job coach will have 

to learn the individual tasks, break these down into 

appropriate component parts of instruction to the 

disabled population receiving the training, and 

then teach the skills in an appropriate manner to 

the individual client. This requires a job coach with 

a broad array of skills, able to adjust to various 

types of occupations, and able to do appropriate 

training in the various occupations. Since the 

job coach model will exist in, and be totally 

integrated into, a community-based employment 

work area, it is expected that the client will 

bring with him/her a basic set of social behaviors 

acceptable to the work environment. Having a job 

coach on the premises facilitates the teaching of 

appropriate social skills, but employers often will 

reserve the right to reject individuals from the 

work situation if it is determined that their 

behavior is inappropriate for the work situation 

or is offensive to other workers. 

 Level of Supervision: In the job coach 

model, supervision and training must be oneon-one. Consequently, the availability of resources to support one job coach per client over 

an extended period of time is often restricted. 

III. Supported Employment Considerations 

Although it is generally accepted in the rehabilitation community that supported employment 

program models are the wave of the future, several 

considerations must be taken into account to ensure that 

this program model has long-term value and to 

ensure that there is no threat to needed existing 

service programs or those clients engaged in 

programs. Following are some considerations that 

need to be taken into account. 

COST 

The rehabilitation facility will incur additional 

costs associated with the development of 

community-based or supported employment models. 

The additional costs will include startups for work 

or labor which will include wages and benefits. If 

the facility is to maintain the clients on payroll, a 

second area of consideration is the insurance 

liabilities that rehabilitation facilities may be 

incurring as a result of having workers at 

community-based sites. Rehabilitation facilities are 

strongly encouraged to check with their insurance 

carriers to ensure that there will be appropriate 

insurance coverage in the event of product 

malfunctioning, damage to goods, etc. There is the 

additional cost associated with supervision, since 

many of the staff-to-client ratios are smaller in 

community-based sites than in traditional, facilitybased rehabilitation programs There is also the cost 

associated with the management of community-based 

programs, since it is managing over distance. 

Consideration must be given to issues such as who 

provides supplies and equipment, transportation that 

might be necessary either for materials or personnel, 

and the administrative costs of managing multiple 

sites. 

RESPONSIBILITIES 

In a supported employment model, the 

community-based company generally provides the: 

 Space; 

 Work and materials; 

 Supplies and equipment; and 

 Payment for work performed. 

The agency provides: 

 A guaranteed number of workers to complete the 

work; 

 Appropriate supervision to ensure that both 

quality and quantity standards are met; 

75 
 Training of the clients engaged in the work; 

 Pay administration; 

 Benefits, compensation and insurance; 

 Management of personnel functions. 

ADVANTAGES TO THE CLIENT 

The community-based program models have 

many advantages to the person with disabilities 

engaged in community-based work. Among these 

is the fact that the client is in situations which put 

competitive expectations upon him or her. The 

competitive expectations are not only the 

requirement of the quantity and quality of work, 

but the social, communication, and recreational 

expectations that are normally part of a nonhandicapped work environment. 

It is also assumed that the work area will be 

"state of the art" for the type of work to be 

performed. This definitely has the advantage over 

traditional facility-based programs which may not be 

doing machine-assisted work as opposed to manual 

or hand labor. 

It is assumed that there will be a higher 

placement rate out of a community-based program 

since individuals will be trained in the work the 

way industry does it, and industry will have an 

opportunity to observe individual clients doing 

work at an acceptable level. 

GETTING STARTED 

In order to initiate the process, it is very 

important that a rehabilitation facility involve all 

persons affected by the program and administrative 

changes necessary to implement community-based 

programming. This will include the administration, 

boards of directors and staff providing existing 

services. It is likely that the initiation of a 

community-based program will have an impact on 

the number of clients served by a rehabilitation 

facility in existing service programs. 

Additionally, the agency must be prepared to 

make an initial investment either in supplies or 

equipment and, in many cases, the initial wages to 

be paid before reimbursement occurs. The final 

consideration in this area would be to identify 

appropriate industries that would be receptive to the 

initiation of community-based programming. 

IDENTIFYING INDUSTRIES 

Following is a list of factors to consider in 

identifying industries likely to be receptive to 

community-based programs: 

 Employers who have high turnover and/or 

absenteeism in certain classifications. 

 Under-utilization of skilled workers on 

routine tasks. (In some instances, community-based employers have skilled laborers doing 

unskilled jobs as part of their normal functions. If 

those industries can be identified, the client 

population often can be used to do the unskilled 

portion of the labor.) 

 Companies which have low productivity due to 

boredom and/or vandalism. In this case, you 

would be looking for industries which have 

repetitive types of tasks and are unable to find 

appropriate types of workers. 

 Companies that have routine overtime pay. 

This information can be obtained from the 

chamber of commerce or from the state employment agency. It would be to employers' 

advantage to add workers managed by a rehabilitation facility to take care of excessive 

workloads and to manage the payroll personnel functions for the additional manpower. 

 Companies that use expensive, temporary 

manpower contracts. This would include 

employers who generally call upon the 

temporary manpower agencies to meet the 

requirements of their labor force. 

 Companies seeking to show good intent for 

affirmative action. 

 Companies considering entering a new area or 

expanding their existing operations. 

ADVANTAGES TO THE COMMUNITY-BASED 

EMPLOYER 

Many advantages can be marketed to the 

community-based employer to solicit their cooperation in developing supported employment 

models. 

 Advantages Over Subcontracting 

The company will have greater product control in 

that they will be able to monitor the quality and 

quantity standards being applied by the 

rehabilitation facility. Additionally, there will 

be faster turnaround of the work since the 

company will have access to completed materials 

without having to provide transportation. The 

community-based company will also be saved the 

cost of transportation or shipping from the 

rehabilitation facility to the community-based 

site. The community-based concern should also 

have a lower bid rate from the rehabilitation 

facility since they will not be paying for the 

overhead charges normally associated with 

contract bidding. Finally, the community- based 

concern will have a personnel selection pool from 

which to draw competent and trained workers 

for openings that exist in their company. 

 Advantages Over Regular Hiring 

The community-based concern will be given the 

advantage of having a dependable work 

76
force for the completion of the work since the 

rehabilitation facility will assume responsibility for 

meeting quality and quantity standards. There also 

will be the advantage of having extra supervision, 

provided by the rehabilitation facility, at the 

community-based site to assist in managing the total 

work flow within the industry site. The communitybased concern also will not be responsible for 

paying fringe benefit costs or additional insurance 

for clients. 

Downtime costs for the community-based concern 

will also be limited since the rehabilitation facility 

will be responsible for the clients' work 

scheduling. Consequently, if work ceases to exist, 

the rehabilitation facility will have the 

responsibility for finding an alternative activity for 

the client population. Finally, the community-based 

concern will have the advantage of reducing its hiring 

and training costs, which are generally substantial. 

Since the rehabilitation facility will be selecting and 

training new employees, it will be bearing all the 

front-end costs of recruitment selection and of 

training. 

PLACEMENT CONSIDERATIONS 

Rehabilitation facilities, prior to engaging in an 

agreement to provide community-based services, 

should take the following criteria into consideration: 

1. Is the company easy to reach by public 

transportation? 

2. Are facilities accessible? 

3. How well is the industrial plant kept up? 

4. Do the client workers learn marketable skills? 

5. Will clients follow the same work schedule routine 

as the industry site workers? 

6. Do clients work in the same area and use the 

same facilities? 

7. Do clients comprise only a small percentage of the 

total? 

8. What is the common company image? 

DEVELOPING CONTACTS 

It is important that the rehabilitation facility, in 

starting a supported employment model, develop and 

write contracts with the community-based concern to 

ensure protection for the facility, the industry and the 

client. The following are parts of a written contract 

that should be developed: 

 Services 

The agency, along with the community 

industry, should define what quality and quantity standards are to be maintained and met 

by the rehabilitation facility and the client 

workers. Additionally, there should be a clear 

determination of who is responsible for the 

maintenance of any equipment used for the 

production of goods or services. The contract 

also should contain a statement as to who is to 

purchase the raw materials to be used as part of 

production and who is responsible for the 

delivery of materials to the work site and to the 

point of shipping. 

 Personnel 

The contract for the rehabilitation facility should 

indicate that no fixed number of individuals will be 

assigned to the site, but rather the rehabilitation 

facility will have discretion in assigning the number 

of people it needs to have to achieve the work 

agreed to. The rehabilitation facility also should 

take responsibility for assigning the workers, although the community-based concern would have 

the right to reject workers they did not feel were 

advantageous to have at the work site. The 

contract should define clearly who is responsible 

for the training of the client workers. There 

should also be a statement as to who is responsible 

for the payroll administration and insurances that 

might be necessary to protect the facility, 

industry and client. 

 Equipment 

The contract should contain a definition of what 

equipment is going to be used and allowed on the 

work site, who is going to provide the equipment, 

who provides maintenance and on what schedule. 

 Work Schedule 

It is important to include as part of the contract what 

the normal work hours will be and when the 

rehabilitation facility has access to the work area. 

Holidays, vacations, etc. may be different between 

the rehabilitation facility and the community-based 

industry. This is particularly true of industries 

associated with school systems, which have a 

tendency to have more holidays off. It is equally 

important that the rehabilitation facility have access 

to the work area so as to assure that they will be 

able to meet production requirements of the 

contract. 

 Payment 

Contracts should clearly define the mechanism by 

which the community-based concern will reimburse 

the rehabilitation facility for work performed. This 

could be done either through payment for number of 

units produced or a fixed number of worker hours 

assigned to the contract at a competitive level. 

 Term of Contract 

Finally, the written contract with the community-based concern 

should clearly identify the starting date of the contract, the cir77 
cumstances under which the contract can be 

cancelled, and the procedures to be used in the 

event of a need to re-bid the costs associated with 

conducting the contract. 

IV. Supported Employment Policy Issues 

The issues to be fully addressed on 

supported employment relate to definition, 

coordination and funding. 

DEFINITION 

Unfortunately, there is not yet a clear definition of 

Supported Employment. Each federal agency 

concerned with the vocational needs of mentally 

retarded citizens should come together for the purpose 

of clearly defining this topic in terms of length of 

program time, who has responsibility for funding, 

what are service components, who is it intended for, 

what are the projected outcomes and who are the 

service providers. 

Presently, within a specific state, a program can 

exist providing for all of the components of a 

supported employment program model but be time 

limited, and therefore not eligible for supported 

employment funding. 

 Coordination 

Once the definition of supported employment is 

clearly stated, the various agencies within the 

states must determine what components of the 

supported employment model are 

their responsibilities. This determination should 

then be communicated to the service providing 

community, consumers and parents of consumers. 

Preferably, the definition of responsibility would 

be included in state plans submitted to the federal 

authorities, reviewed for consistency to the federal 

definition and intent and then approved for 

implementation. Agencies within states should not 

have duplicate responsibilities for the vocational 

rehabilitation of mentally retarded citizens. 

 Funding 

Clearly, additional funding is going to be 

necessary if a full transition is to be made to supported 

employment. The existing individuals being served 

within rehabilitation facilities have a right to have 

their program maintained, even if only until 

placement can be arranged. 

As with the topic of coordination, agencies within 

states must identify the components of the 

supported employment program that they must fund. 

There needs to be clear communication regarding 

what are the services for which funding is 

available, how long is the funding to last, who is the 

population the funding is intended for and who is 

eligible to provide services. Again, responsibilities for 

funding should be identified in state plans 

submitted, for approval, to the federal authorities. 

78 
Some Initial Findings of the TransitionalEmployment Training Demonstration 

by Aaron J. Prero, Ph.D. 

Economist 

Department of Health and Human Services 

Social Security Administration 

Baltimore, Maryland 

The Social Security Administration's 

Transitional-Employment Training Demonstration 

provided transitional employment (TE) services to 

375 recipients with mental retardation of 

supplemental security income (SSI) during the period 

June 1985 to June 1987. The experiences of this training 

group are being compared with those of a control 

group of 370 such SSI recipients who did not 

receive training. The objective is to determine the 

costs and benefits of these services and to analyze 

various important issues in the implementation of programs of TE placement and training. This SSI 

demonstration was conducted under authority of 

Section 1110(b) of the Social Security Act. (This 

section was placed into the Act by the Social Security 

Disability Amendments of 1980, Public Law 96-165, 

Section 505(b)). 

Some results of the demonstration are now 

available. Other outcomes of the demonstration such 

as changes in earnings, reduced SSI payments due to 

earnings, and cost-effectiveness of TE cannot be fully 

measured as yet, since they depend on job retention 

rates over time. A report on those issues will be 

prepared in 1989, when data on the job retention 

rates of the recipients involved in the demonstration 

are available. 

Description of the Demonstration 

PURPOSE 

The demonstration tested the effectiveness of TE 

training for SSI recipients with mental retardation. 

Training was offered to recipients in 13 localities 

around the country through 8 organizations which 

received Social Security Administration grants. 

The questions addressed by the demonstration 

were: 

 What does TE training cost? 

 To what extent can TE lead to long-term 

employment, to reduced SSI payments due to earnings, 

and to other benefits? 

 What characteristics of clients make them more 

likely to succeed? 

 What characteristics of programs make them more or 

less effective? Can TE programs be operated at 

policy-relevant scales? 

Although some prototype transitionalemployment programs for persons with mental 

retardation have existed for almost 15 years, they 

have generally not produced reliable data on clients 

who are sufficiently disabled to meet SSI criteria. 

This demonstration project was conducted on an 

adequate scale and with the appropriate scientific 

analysis to produce valid results on TE training 

especially for SSI recipients. 

DEFINITION OF TE 

There are three key elements of TE, as implemented in this demonstration. 

 Training is provided on a real job consisting of 

tasks that another worker would otherwise perform for 

the same employer. The environment is integrated in 

that the trainee interacts with non-handicapped 

coworkers and/or the public. 

 A job coach provides training both in job skills 

and in the social and life skills necessary to retain a 

job. 

 Training is provided for a limited time, a 

maximum of 1 year in this demonstration. 

79 
Ongoing, less intensive services may be provided to 

promote job retention. Ongoing services generally 

consist of monitoring for crises on the job and 

occasionally retraining and placement in another 

job. 

Placement in a potentially permanent job was 

a responsibility of the grantees. At least some of 

the training had to be provided on that job. 

However, grantees were permitted, if they chose, 

to provide the greater part of the necessary training 

before the permanent placement, on another real job 

that was for training only and had no potential for 

permanence. 

SERVICES 

All sites provided job development and 

placement and job coaching services. Job coaching is 

training at the job site by a job coach who is 

employed by the TE training organization. Sites varied 

in the amount of job coaching they provided a 

participant. The amount of full- time, one-on-one 

coaching varied across sites from up to a month to up 

to 3 months before being gradually reduced in intensity. 

Some participants needed little or no job coaching. 

All urban sites provided travel training for 

participants who were not able to travel by bus 

independently. Some sites provided transportation. 

Sites varied in the extent to which they provided 

other social services and case management services. 

Sites were required, under the terms of the grants, 

to provide or arrange for follow-up of permanently 

placed trainees. This service is not being financed 

under the grant and is not limited to the term of the 

demonstration, however, the evaluation of the 

demonstration will include a review of this service. 

The follow-up will consist of periodic contacts with the 

worker and the employer to ensure that no concerns 

arise that might lead to loss of the job. Problem solving, 

retraining, and other similar services will be provided 

as necessary to preserve the job. 

ORGANIZATION OF THE DEMONSTRATION 

The demonstration was designed with the primary 

objective of yielding reliable results. A contractor with 

experience in TE programs, Mathematica Policy 

Research, Inc., was engaged to design the 

demonstration in detail, based on requirements 

specified by the Social Security Administration. The 

contractor was also responsible for: 

 developing the requirements for applications for 

grants to operate demonstration sites, and reviewing 

the applications, 

 developing the data collection instruments and 

procedures, 

 monitoring the training operations and collecting the data from the grantees, and 

 evaluating the results. 

The grantees were three universities and 

university affiliates, three local units of the 

Association for Retarded Citizens and Goodwill 

Industries, and two independent rehabilitation 

organizations. Four of them operate sheltered 

workshops. The grantees were: 

 Children's Hospital, Boston, Massachusetts 

 University of Washington, Seattle, Washington; 

serving Portland, Oregon, in cooperation with 

Portland Community College 

 The University of Wisconsin-Stout, Menomonie, 

Wisconsin; serving a rural area in west central 

Wisconsin 

 Association for Retarded Citizens-Monmouth Unit, 

Monmouth County, New Jersey 

 Exceptional Children's Foundation, Los Angeles, 

California (a unit ,of the Association for Retarded 

Citizens) 

 Goodwill Industries-Milwaukee Area, 

Milwaukee, Wisconsin 

 AHEDD, Inc., Lemoyne, Pennsylvania; serving 

Harrisburg, Lancaster, Philadelphia, Pittsburgh, and 

York, Pennsylvania, and Dover, Delaware 

 The Center for the Rehabilitation and Training of 

the Disabled, Chicago, Illinois 

Grant application guidelines specified cer- 

 tain features of the operations and left other, 

features to the discretion of the grantees. As a result, 

the styles of the sites differed in some important 

respects. Observation of differences in methods and 

of differences in site performance, together with 

analysis of site data, are the basis for most of the initial 

conclusions described in this paper. 

SAMPLE DESIGN 

A sample of 745 SSI recipients were enrolled, 

about half (375) in a treatment group, which received 

TE services, and half (370) in a control group. 

Participants were randomly assigned to one of these 

groups after they were accepted into the program by 

the site and after they (or their representative payees) 

consented in writing to participate. 

The size of the sample was established to permit 

comparison of the effectiveness of TE within 

subgroups of the population, such as persons with 

severe retardation, those who were previously 

institutionalized, or people with multiple disabilities. 

The control group method was used in order to 

determine what portion of the sample would have 

become employed even without receiving TE services, 

since it is known that many persons with mental 

retardation do obtain employment. 

80 
DATA COLLECTION 

The site interviewed each participant by 

questionnaire before the research contractor 

designated the individual as a member of the 

treatment or control group. The same questionnaire 

was used at all sites, permitting pooling of the data. 

Information was collected on household, health, 

vocational experience and training, education, and the 

interviewer's observations of the participant. 

Detailed records on hours and cost of direct 

services provided to a sub sample of participants 

were kept by all sites in a uniform manner 

prescribed by the contractor. 

Data on earnings and reduced SSI payments due 

to earnings will be derived from periodic review of 

SSI administrative records and from a re-interview of 

the participants which the contractor is scheduled to 

perform in the summer and fall of 1988. 

CLIENT RECRUITMENT 

The Social Security Administration mailed 

informational materials on the demonstration to some 

12,000 recipients and their representative payees 

during the first 8 months of the demonstration. Most 

of those who did not respond received a second 

letter from the site in their area. A pool of names 

for the mailing list was initially drawn from SSI 

computerized administrative records and consisted 

of recipients age 18 to 40 who lived in the zip code 

areas served by the sites. Diagnosis is shown on the 

computer record only for recent awards of SSI payments and in cases of recent continuing disability 

reviews. In order to limit the mailing list to persons 

with mental retardation, the claims folders of over 

30,000 recipients whose names were selected from 

the computer record were checked for the nature 

of the impairment. When the primary or secondary 

diagnosis was retardation, the name was added to 

the mailing list. IQ scores of persons on the list 

were recorded when present in the folder for purposes of the statistical analysis. 

When it appeared that enrollment would be 

insufficient to meet sample size requirements based 

on this method of recruitment alone, sites were 

permitted to solicit referrals of SSI recipients from 

other agencies. 

WAIVERS 

Trainees in the project were granted waivers 

that protected their SSI status. These waivers were 

superseded by the revision of section 1619 of the 

Social Security Act which took effect in July 1987. 

The waivers did not alter the provision of 

section 1612 of the Social Security Act that, at certain 

wage levels, the SSI payment is reduced 

based on earnings. None of the waivers in the 

demonstration applied to social security benefits, 

for those who were concurrently entitled to both SSI 

and social security benefits. 

Initial Findings 

Overall, 127 of the 375 members of the 

training group were working in potentially 

permanent jobs when they completed the project. 

This is evidence that TE is a valuable training 

technique. Nevertheless, although the technical 

aspects of TE are well developed, lack of public 

awareness and understanding remain major barriers 

to the full effectiveness of TE for the retarded. 

Acceptance by two major segments of the 

public, the client community and employers, is crucial 

to the success of TE. The demonstration found 

reluctance on the part of the parents and social 

workers of persons with mental retardation to permit 

and encourage participation. This was unexpected, 

since advocacy groups had expressed the conviction 

that parents were eager to use TE services. In fact, 

the proportion of enrollees at some sites who were 

not being served by other agencies was a surprise 

to those sites and led to the conclusion that parents 

who were more active and successful in arranging 

services for their children were satisfied with the 

status quo and were not receptive to considering a 

quick change to TE. 

Acceptance of TE by employers is not widespread in any industry, as this demonstration 

confirmed. Relatively speaking, however, the food 

service and hotel industries are the most open to TE 

placements. These "hospitality industries" 

commonly hire workers who do not fit the fulltime, long-term, reliable-worker mold, and are, 

therefore, also more amenable to hiring workers who 

are unusual in other respects, like mentally retarded 

TE workers. 

Although placement in non-hospitality jobs was 

difficult, it was not impossible. Over a third of the 

demonstration's participants who got and held 

potentially permanent jobs were working in light 

manufacturing, clerical, and similar jobs. Clients 

showed that they could perform such jobs 

successfully, as well. 

EMPLOYMENT OUTCOMES 

The 127 participants who were holding potentially permanent jobs when they completed the 

project represent 34 percent of the 375 members 

of the treatment group. Another 57 participants (18 

percent) also were placed in one or more 

potentially permanent jobs but failed to retain those 

jobs. An additional 70 participants (19 percent) were 

placed in training jobs but could not be 

subsequently placed in potentially permanent jobs. 

81 
The average holder of a permanent job was 

earning $111 per week for 27 hours' work as of the 

end of his enrollment in the program. This had the 

potential for reducing the individual's monthly SSI 

payment by about $175. However, this initial finding 

alone is not an adequate basis for projecting future 

reduced SSI payments based on earnings. Even the 

most optimistic expectations of job retention allow 

for some decay over time in the number of persons 

employed. And an important preliminary finding of 

the demonstration is that there is some (as yet 

unmeasured) tendency for recipients living in the 

household of another to move to independent living 

arrangements after they become employed. This 

tends to raise SSI payments. 

Hours of employment, earnings, and reduced 

SSI payments based on earnings will be followed 

over time through a re-interview of participants in 

late 1988 and periodic review of SSI administrative 

records. It is by this means that the Social Security 

Administration will be able to accurately estimate 

the overall cost- benefit results of the 

demonstration. 

COST ISSUES 

Demonstration services cost about $7,650 per 

participant. This includes costs that were borne by 

the grantees in the form of grant matching. 

Somewhat more than $2,000 of these per person costs 

are attributed to the resources used in starting up and 

terminating the program. It is estimated that the same 

service could have been provided for about $5,600 

per client by similar organizations operating in a 

steady state over the long run. This includes expenditures on job coaching, job development, outreach, 

and other tasks performed by direct service personnel, 

as well as program administration and an allocated 

portion of agency overhead. 

These figures are a weighted average of the 

experiences of the demonstration sites. Cost per 

participant can be much lower or higher, depending 

on the resources which an agency devotes to job 

coaching and job development, the efficiency of 

management, success in placing clients for training, 

and similar considerations. 

One cost issue is the professional background 

needed by job coaches. Some practitioners of TE for 

persons with mental retardation advocate that job 

coaches have advanced degrees in relevant 

disciplines and broad responsibilities for task 

analysis, job development, counseling, and other 

services, as well as coaching. Since such personnel 

generally command higher salaries, and since job 

coaching is a particularly time-intensive part of TE 

services, the issue of the formal training needed by job 

coaches has significant cost implications. 

The demonstration found that TE services can 

be delivered effectively even if many staff 

members have little formal training in rehabilitation 

and education, so long as a professionally prepared 

and effective service coordinator designs the training 

plan and monitors the coaches. One site that had 

employed only coaches with formal education 

changed its policy while the project was in 

progress. The qualities that the sites valued most 

in a prospective job coach were experience with 

business and industry, maturity, enthusiasm, 

patience, communication skills, and a good attitude 

toward persons with mental retardation. 

Costs might also be reduced by better 

methods of screening participants, to target TE 

training only to persons who have a strong likelihood to succeed in the program. This 

demonstration did not itself employ targeted 

screening, in part to determine specifically what 

sort of clients are particularly unsuitable for the 

service. That is, one goal was to discover strong 

correlations between particular characteristics of 

the individuals and success or failure in the program, 

so that screening methods could be recommended 

for use in future programs. 

PREDICTING SUCCESSFUL OUTCOME 

The finding of the demonstration in this 

regard was that success in achieving permanent 

employment was not well correlated with IQ 

score, secondary handicaps (except behavioral, as 

noted below), or any other characteristics 

measured. However, a subjective prediction by the 

intake worker of the likelihood of success in the 

program was recorded at the time of enrollment. 

This prediction showed a correlation with client 

success. 

One likely interpretation of the intake 

worker's ability to predict success is that, as is 

frequently asserted, the trainee's motivation to 

succeed, or at least to cooperate, is of overwhelming importance; and this is what the 

intake worker's subjective prediction measured. 

A second interpretation is that a client who is 

weak in some few areas can still succeed, 

as long as he/she has some compensating strengths. 

Further research might develop an index for 

weighting the strengths and weaknesses of clients 

and produce more objective and accurate 

evaluations of success potential. 

Another client characteristic which was — like 

motivation — difficult to ascertain objectively 

was the level of family support and encouragement, 

or similar support from elsewhere in the 

community. Family support was

82 
suspected of being an important factor in determining employment success. 

A characteristic possibly related to client 

failure was emotional disturbance or mental 

illness. As the demonstration progressed, sites 

discovered they could work with almost any low level 

of functioning presented by a trainee who was able 

to get to the job, but that it was more difficult to 

work with many of the behavior problems 

presented. It was frequently but not always possible 

to modify behavior that was unacceptable in the 

workplace. 

The extent to which the behavior was subject to 

improvement was difficult to predict. 

Inappropriate workplace behavior exhibited in a 

sheltered, segregated environment does not reliably 

indicate that the client cannot be trained to conform 

to the requirements of an integrated workplace. One 

of the principal advantages of TE training in a real 

job is that the examples and expectations of coworkers greatly influence the behavior of the 

trainee. 

In any event, nearly one-third of the training 

group members were not placed in a single 

permanent or training job, either because they 

dropped out of the program or because the site 

could not serve them. This is an indication that there 

is a need for better screening procedures than the 

demonstration sites used in evaluating clients. 

Site personnel have expressed the belief that 

their predictions would have gained in accuracy 

over the first 4 to 8 weeks of service to the point of 

being quite reliable by that time. This assertion is as 

yet not verified, but it suggests an approach to the 

use of screening criteria related to motivation, 

family support, behavior, and other characteristics 

that are difficult to measure. 

REFERRAL 

While clients enrolled in the demonstration 

largely in response to the informational material 

mailed to them by the Social Security 

Administration, sites also solicited referrals from other 

agencies serving the retarded. Relationships among 

agencies vary from place to place and over time, so 

it is difficult to generalize about them. But it can be 

said, at the very least, that most of the 

demonstration's sites did not gain the full 

cooperation of the sheltered workshops in their 

areas, despite strong attempts. The possible reasons 

vary from simple competition for clients to workshops' 

pessimistic assessments of what their clients might 

achieve through the TE method to a feeling of 

being threatened by the TE movement. Changes are 

taking place, however, in this area of social service, 

so this situation is subject to improvement. 

 There is reason to believe that the sites would 

have placed a larger proportion of trainees had there 

been more referrals from sheltered workshops. This 

is because: 

 workshops have a better opportunity to 

screen for the clients who are more motivated, 

and 

 clients enrolled in workshops are more likely to 

have better family and community support systems 

than persons who are not receiving services from 

any agency. 

TRANSPORTATION 

The outcomes of the demonstration would have 

been very different if not for limitations on the 

availability of transportation to worksites. Clients who 

could have been successfully integrated into available 

full-time jobs that matched their abilities were 

frequently relegated to part-time work, jobs for 

which they were not as well suited, or no placement 

at all, because of transportation problems. 

Bus routes and schedules that did not accommodate a prospective job, or the client's 

inability to travel by bus, were the main limitations. 

Bus service is simply unavailable at worksites in 

some rural and suburban areas. 

Furthermore, an unknown but possibly substantial 

number of eligible recipients declined to enroll in 

the program because of inadequate transportation 

opportunities, inability to travel by bus 

independently, or fear of the risks to a retarded 

person traveling by bus. 

TRAINING-ONLY JOBS 

The experience of the demonstration suggests 

that training on a potentially permanent job from 

the start is a more effective method than training in 

a training-only job, from which the worker will be 

transferred once he has mastered the necessary job 

and social skills. 

Training-only jobs are frequently found in 

restaurants and cafeterias, hotels, hospitals, and mobile 

janitorial crews. Typically one job coach 

supervises a few trainee positions. In this 

demonstration, the locations of training-only jobs 

included a college cafeteria, a hospital cafeteria, 

and a hospital housekeeping department, all of 

which belonged to grantees, and similar operations 

in outside for-profit and not- for-profit organizations. 

Employers are usually induced to allocate positions 

to training-only jobs by, among other things, a 

guarantee that the agreed upon production levels 

will be maintained, even if it requires the job 

coach's doing the work. Wages can be less than the

83 
normal legal minimum. 

THE ADVANTAGES OF TRAINING-ONLY 

JOBS ARE: 

 They can be recycled as trainees graduate into permanent 

placements. Agencies' job development needs are then 

primarily for clients who are job-ready. It is much 

easier, of course, to find jobs for such clients. 

 Clients with disruptive behavioral problems, or 

whose productivity is extremely low at the start, 

can be accommodated more easily in a trainingonly job, especially in the agency's own facilities. 

 Job coaching is less costly when a number of trainees 

are in training jobs at the same location and can share 

a job coach. 

DISADVANTAGES OF TRAINING-ONLY 

JOBS ARE: 

 Moving from the training-only job to the potentially 

permanent job demands greater client adaptability 

because of new responsibilities, the layout of a new 

workplace, new work rules (like when and where 

to take breaks, how to arrange leave time), and new 

personalities of supervisors and helpful coworkers. Features of the former work environment that 

the job coach had incorporated as cues to the trainee 

are usually lost. 

 There are very few opportunities to develop groups 

of training-only jobs in light manufacturing 

occupations rather than food service and cleaning 

occupations. The abilities of many persons with 

retardation are not as well matched to food service 

and cleaning jobs as to the more repetitive tasks 

that frequently comprise a light manufacturing job. 

Agencies that routinely put all trainees through a food 

service or similar curriculum may foreclose the 

possibility of successfully serving some clients. 

 Moving clients from job to job can deprive them of 

on-the-job friendships, leading them to drop out, just 

as some have quit their TE jobs and returned to their 

sheltered workshops because they missed their old 

friends. 

 Transportation must be feasible to both the trainingonly job and the subsequent permanent job for a 

successful outcome to be realized. 

Summary and Conclusion 

TE is an effective method for training persons 

with mental retardation to work in regular market 

place jobs. Persons with a wide range of IQs and levels 

of functioning, including those whose performance 

in sheltered workshops and work activity centers had 

been mediocre, are succeeding on integrated jobs 

through TE training. 

A number of difficulties remain, however, in the 

implementation of TE programs. First, caregivers of 

persons with retardation and employers are largely 

unaware or unconvinced that TE is a key to successful 

performance in market place jobs. Second, unmet special 

transportation requirements of many jobs and of many 

people with retardation frequently prevent clients 

from being placed in full-time jobs which match their 

abilities. Third, it is difficult to determine in advance 

whether a given candidate for TE training is likely to 

succeed. This uncertainty raises the costs to providers 

and the risks to trainees. 

The Transitional-Employment Training 

Demonstration addresses these and other issues in the 

implementation of TE training. Issues of costs and 

benefits and of employment impacts are being further 

studied through a survey of demonstration participants 

in late 1988 and periodic review of SSI administrative 

records. 

Through TE the objective of moving people 

from the benefit rolls to the labor force can be 

achieved, while helping those persons achieve greater 

community respect and self- respect and generally 

more productive lives. 

84 
Utilization of the Nation's "Job Training 

Partnership Act" Program 

by Paul Hippolitus 

Director Plans, Projects & Services 

The President's Committee on Employment 

of the Handicapped 

and Ex Officio Member 

President's Committee on Mental Retardation 

The “Job Training Partnership Act (JTPA)" 

Program offers citizens with mental retardation an 

excellent opportunity for employment related training. 

Each year, over 100,000 persons with disabilities 

successfully complete this program. While we don't 

know how many persons with mental retardation are 

being served, we do know from anecdotal data that 

many already take advantage of this community 

program. 

It's important for all of us who are supporting 

the community integration of persons with mental 

retardation to understand and utilize this vast 

program as we strive to meet the employment related 

needs of this population. The purpose of this paper is 

to describe the operation of the Nation's JTPA 

program and to offer the reader ideas on "how to" 

improve this program's ability to serve persons with 

mental retardation. 

It's important to realize that the JTPA program is 

a locally governed program. It's ability to serve 

persons with mental retardation is all too often in 

direct proportion to our involvement in its decision 

making process. Therefore, we all need to be both 

knowledgeable and involved at both the State and 

local levels. It's the hope of the author that this paper 

helps us in this regard. 

JTPA PROGRAM STRUCTURE 

The "Job Training Partnership Act" consists of 

four (4) titles. Title I outlines the JTPA administrative structure, as described above, sets forth 

accountability procedures to prevent misuse and 

fraud and creates two (2) special funding 

programs. These two programs are as follows: 

Section 123 — 'State education grants" — a 

program administered by the governor whereby 

JTPA monies available under section 202 (b) (1) 

of the Act can be awarded to state education 

agencies to provide education and training, including 

vocational education services, and related services to 

eligible youth. Such services (related services) may 

include services for offenders and other 

individuals whom the governor determines 

require special assistance. The state education 

agency must, however, match the JTPA funds under 

such an agreement. The other special funding 

program under Title I is Section 124 — "training 

program for older individuals". This program is 

likewise administered by the governor and utilizes 

monies available under section 202 (b) (2) of the 

Act. Program participants must be over the age of 

55 and economically disadvantaged. 

Title II of JTPA establishes employment 

training programs for the disadvantaged. Here, two 

basic programs are described. The first under Title 

II is Part A — "Adult and Youth Programs". This 

program is designed to provide unemployed 

disadvantaged youth and adults with employment 

training. Services that may be provided include but 

are not limited to the following: 

1. job search assistance, 

2. job counseling, 

3. remedial education and basic skills training, 

4. institutional skill training, 

5. on-the-job training, 

6.programs of advanced career training which 

provide a formal combination of on- the-job and 

institutional training and internship assignments 

which prepare individuals for career 

employment, 

7. training programs operated by the private sector, 

including those operated by labor 

85 
organizations or by consortia of private sector 

employers utilizing private sector facilities, 

equipment, and personnel to train workers in 

occupations for which demand exceeds supply, 

8. outreach to make individuals aware of, and 

encourage the use of employment and training 

services, 

9. specialized surveys not available through other 

labor market information sources, 

10. programs to develop work habits and other services 

to individuals to help them obtain and retain 

employment, 

11. supportive services necessary to enable individuals 

to participate in the program and to assist them in 

retaining employment for not to exceed 6 months 

following completion of training, 

12. upgrading and retraining, 

13. education-to-work transition activities, 

14. literacy training and bilingual training, 

15. work experience, 

16. vocational exploration, 

17. attainment of certificates of high school 

equivalency, 

18. job development, 

19. employment generating activities to increase 

job opportunities for eligible individuals in the 

area. 

20. pre-apprenticeship programs 

21. disseminating information on program 

activities to employers. 

22. use of advanced learning technology for 

education, job preparation, and skills training, 

23. development of job openings, 

24. on-site industry-specific training programs 

supportive of industrial and economic 

development, 

25. follow-up services with participants placed in 

unsubsidized employment, 

26. coordinated programs with other Federal 

employment-related activities, 

27. needs-based payments necessary to participation in 

accordance with a locally developed formula 

or procedure, and 

28. customized training conducted with a commitment by an employer or group of employers 

to employ an individual upon successful 

completion of that training. 

86 
The President's Committee on Employment of the Handicapped 

Washington, D.C. 20210 

A Review and Analysis of 

The "Job Training Partnership Act" 

Public Law 97-300 

I. The Review 

PURPOSE 

"To establish programs to prepare youth and 

unskilled adults for entry into the labor force and to 

afford job training to those economically 

disadvantaged individuals and other individuals facing 

serious barriers to employment, who are in special 

needs of such training to obtain productive 

employment." 

JTPA ADMINISTRATIVE STRUCTURE 

The governor of a State will determine the number 

and location of independent "service delivery areas" 

within the State. Each service delivery area will be 

directed by one or more units of local government and 

have the responsibility to promote within its 

jurisdiction the effective delivery of job training 

services authorized under this Act. Also, each service 

delivery area will establish a "private industry 

council" (PIC). The private industry council will be 

responsible for providing policy guidance and 

oversight with respect to activities under the job 

training plan of its service delivery area. And, each 

service delivery area is required to develop and 

maintain a “job training plan” which will, among 

other things, describe the employment problems of the 

area, describe the services to be rendered, identify 

procedures for identifying and selecting participants 

and offer program performance goals. The job 

training plan will be approved by the State governor. 

At the State level, the governor shall annually 

prepare a statement of goals and objectives for all of the 

State's job training and placement programs authorized 

under this Act. This statement is called the 

"governor's coordination and special services 

plan". It will, among other things, establish guidelines 

for the preparation of local job training plans. 

Additionally, the governor will establish a "state 

job training coordinating council". The purpose 

of the council will be to plan, coordinate and monitor programs funded within the State and through this 

Act. The council will also recommend to the governor 

an annual governor's coordination and special 

services plan, review the operation of local programs, 

make an annual report, and perform other duties as 

determined by the governor. 

Lastly, each administrative entity, contractor and 

grantee, under this Act, shall establish and maintain a 

 

grievance procedure for complaints about its programs 

and activities from participants and other interested 

persons. A hearing on a complaint shall be conducted 

within 30 days and a decision made within 60 days of the 

grievance. Complaints can be made within one year of 

the alleged occurrence. 

Also authorized under Part A are a series of four 

"exemplary youth programs” (section 205) 

which may be made available, at the discretion of 

those responsible for preparing the job training 

plan for a service delivery area. These four 

exemplary youth programs are as follows: 

1. “Education for employment program” — 

for eligible youth who have not obtained a high 

school diploma, with priority given to high 

school drop-outs. Under this program a network 

of learning centers can be funded designed to 

prepare these youth to meet State and locally 

determined general education diploma and 

basic education competencies. 

2. “Pre-employment skills training 

program” — for eligible youth and individuals 

aged 14 and 15, with priority given to those 

individuals who do not meet established 

levels of academic achievement and who plan 

to enter the full-time labor market upon leaving 

school. This program can provide these youth 

with up to 200 hours of instruction and activities in 

such areas as: assessment, counseling, career 

exploration, job search assistance, job holding 

skills, basic life skills, remedial education, job 

seeking skills training and more. 

3. “Entry employment experience 

program” — this is a work-study program 

providing up to 20 hours a week of work, not to 

exceed a total of 500 hours. 

4. "School-to-work transition assistance 

program” — for eligible youth who are seniors in 

high school. Transitional services which may be 

provided under this program are: the provisioning 

of occupational information, short duration job 

search assistance, job clubs, placement and job 

development and follow-up. 

The second basic program under Title II is 

Part B — Summer Youth Employment and 

Training Programs. Programs under this part 

87 
permit similar types of activities, as described under 

Part A, to be funded for eligible youth during the 

summer months. 

Title III of the "Job Training Partnership Act" 

establishes employment training programs for dislocated 

workers. This program is designed to provide training, 

retraining, job search assistance placement, relocation 

assistance and other aid (including pre-layoff assistance, 

job development and job clubs) to individuals who 

are affected by mass layoffs, natural disasters, Federal 

government actions (such as relocation of federal 

facilities) or who reside in areas of high 

unemployment or designated enterprise zones. 

Title IV of the "Job Training Partnership Act" 

establishes employment training programs for Native 

Americans, migrant and seasonal farm workers. Also, 

the "Job Corps" is reestablished, and in Part C of Title 

IV, a special veterans employment program is created. 

All programs under Title IV, including veterans, are to 

be administered by the Federal government on a grant 

basis. 

JTPA DEFINITIONS RELEVANT TO 

DISABLED PEOPLE 

The term "economically disadvantaged" means 

an individual who (A) receives, or is 

a member of a family which receives, cash welfare 

payments under a Federal, State or local welfare 

program; (B) has, or is a member of a family which 

has received a total family income for the six-month 

period prior to application for the (JTPA) program 

involved (exclusive of unemployment 

compensation, child support payments and welfare 

payments) which, in relation to family size, was not in 

excess of the higher of (i) the poverty level 

determined in accordance with criteria established by 

the Director of the Office of Management and 

Budget, or (ii) 70 percent of the lower living 

standard income level; (C) is receiving food stamps 

pursuant to the Food Stamp Act of 1977; (D) is a 

foster child on behalf of whom State or local government payments are made; or (E) in cases 

permitted by regulations of the Secretary of Labor is an adult handicapped individual whose 

own income meets the requirements of clause 

(A) or (B), but who is a member of a family 

whose income does not meet such requirements.

The term "handicapped individual" means any 

individual who has a physical or mental disability which 

for such individual constitutes or results in a substantial 

handicap to employment. 

The term "youth" means an individual who is aged 

16 through 21. 

The term "adult" means an individual who is 22 

years of age or older. (Note how this modifies the 

advantage afforded handicapped individuals under the 

term "economically disadvantaged" above). 

The term "support services" means services 

which are necessary to enable an individual eligible 

for training under this Act, but who cannot afford to 

pay for such services, to participate in a training 

program under this Act. Such support services may 

include transportation, health care, special services and 

materials for the handicapped. ... 

The term "community based organizations" means 

... vocational rehabilitation organizations, 

rehabilitation facilities (as defined in Section 7(10) of 

the Rehabilitation Act of 1973, agencies serving 

youth, agencies serving the handicapped. ... 

JTPA FEATURES OF SPECIAL RELEVANCE 

TO DISABLED PEOPLE 

Section 108 of the Act describes limitations on 

certain costs. For example, not more than 30 percent 

of the funds available to a service delivery area may 

be spent on administrative costs. Administrative costs 

include, among other things, supportive services (see 

definition above). However, expenditures may be made 

in excess of this 30 percent limitation if "the job 

training plan for the service delivery area proposes to 

serve a disproportionately high number of 

participants from groups requiring exceptional 

supportive services costs, such as handicapped 

individuals ..." 

Section 106 of the Act sets forth general requirements with respect to the setting of performance 

standards, which must be met by programs 

operating with JTPA funds. While the final 

performance standards will be developed by the 

Secretary of Labor, the Act suggests they include 

such factors as: numbers of placements in unsubsidized 

employment, retention in unsubsidized employment, 

increase in earnings, etc. Subsection 106 (d) (3) says, 

however, "The Secretary of Labor shall prescribe 

variations in performance standards for special 

populations to be served, including Native 

Americans, migrant and seasonal farm workers and exoffenders, taking into account their special 

circumstances". While handicapped individuals are 

not listed here, their special employment problems 

would seem to be significant enough to warrant 

variations in performance standards. If this is not done, 

program operators might avoid involving those 

handicapped people whom, they believe, would hinder 

achievement in the area of general performance 

standards.

88 
Section 167 of the Act sets forth the civil rights 

obligations of program operators. It says, "For the 

purpose of applying the prohibitions against 

discrimination on the basis of age under the Age 

Discrimination Act of 1975, on the basis of handicap 

under Section 504 of the Rehabilitation Act, or on 

the basis of sex under Title IX of the Education 

Amendments of 1972, or on the basis of race, color or 

national origin under title IV of the Civil Rights Act 

of 1964, programs and activities funded or otherwise 

financially assisted in whole or in part under this Act 

are considered to be programs and activities receiving 

Federal financial assistance." 

Section 167 goes on to say, "No individual shall 

be excluded from participation in, denied the benefits 

of, subjected to the discrimination under, or denied 

employment in the administration of or in connection 

with any such program because of race, color, religion, 

sex, national origin, age, handicap or political 

affiliation or belief." 

Section 203 of the Act describes eligibility for 

services. It states, "except as provided for in paragraph 

(a) (2), an individual shall be eligible to participate 

in programs receiving assistance under this title 

(Title II programs) only if such individual is 

economically disadvantaged." 

Paragraph (a) (2) does offer some interesting 

possibilities for handicapped individuals; it states, "up to 

10% of the participants in all programs in a service 

delivery area receiving assistance under this part may 

be individuals who are not economically 

disadvantaged if such individuals have encountered 

barriers to employment. Such individuals may include, 

but are not limited to, those who have limited English 

language proficiency, or are displaced homemakers, 

school dropouts, teenage parents, handicapped older 

workers, veterans, offenders, alcoholics, or addicts." 

Eligibility under Title III — Employment and 

Training Assistance for Dislocated Workers, is 

outlined in Section 302. It states, "each State is 

authorized to establish procedures to identify 

substantial groups of eligible individuals who: 1) have 

been terminated or laid off or who have received a 

notice of termination or lay-off from employment, are 

eligible for or have exhausted their entitlement to 

unemployment compensation, and are unlikely to 

return to their previous industry or occupation; 2) have 

been terminated, or who have received a notice of 

termination of employment, as a result of any 

permanent closure of a plant or facility; or, 3) are longterm unemployed and have limited opportunities for 

employment in the same or similar occupation in the 

area in which such individuals reside, including older 

individuals who have substantial barriers to 

employment by reason of age.” 

Full implementation of the new Act's systems and 

program requirements is required by October 1, 1983. 

The transition provisions outlined in Section 181 of 

the Act include requirements for the early publication 

of those regulations necessary to structure and implement the planning system under Title I of the Act and 

all aspects of programs under Title II. 

Proposed rules were published in the Federal 

Register on January 18, 1983 governing the 

implementation to programs under Titles 

I, II and III. The introductory section sets the tone of 

the regulations. It states, "The Secretary believes that 

the Act is sufficiently clear and, therefore, requires 

only limited and select interpretation via regulations. 

Governors and other participants in the delivery 

system will need to be guided principally by the Act, 

as supplemented by the regulations." No major 

points are made in these regulations which might 

impact on handicapped individuals vis-a-vis the Act. 

How to Get Involved With JTPA 

II. The Analysis 

CONSIDERATIONS 

While it has been widely reported that the new 

"Job Training and Partnership Act" (JTPA) will not be 

funded at anywhere near the highest levels of CETA, 

it's important to remember that only 17% of CETA's 

funds were actually spent on training. JTPA requires 

that 70% of its funds be spent on training. Thus, even 

if JTPA is only funded at the 3.8 billion level, the last 

and lowest appropriation level for CETA, actual training 

dollars may triple! And, the high levels of 

unemployment facing our country may persuade the 

Congress and the Administration to increase the 

appropriation beyond the anticipated 3.8 billion dollar 

level. 

Another consideration to keep in mind as we 

prepare to do business with JTPA is the openendedness of the program. Unlike CETA, the JTPA 

legislation does not limit the life span of the 

program. Theoretically, it can continue indefinitely. 

The last general point or consideration worth 

noting before we explore how to become involved 

with JTPA relates to the latest statistic describing the 

participation rate of handicapped people in CETA. 

The Department of Labor reports that for the last 

three quarters 10.6% of all CETA participants have 

been identified as handicapped. If this is true, our 

89 
Nation's public training program has become a vital 

programming element in the work preparation of 

handicapped people. This advance must not be 

lost. 

ACCESSING JTPA 

It appears as though we're going to have to 

modify our approach as the new JTPA law takes 

over. Unlike the old CETA program where by 

virtue of the disability, a handicapped person was 

eligible for services, under JTPA the program 

applicant must be economically disadvantaged* 

in order to be eligible. True, there remain some 

minor exceptions to this rule, to the benefit of 

handicapped persons; but, in the main, it's a 

program for the economically disadvantaged. 

Consequently, our primary approach or "sell" has to 

shift from fostering opportunities in CETA for 

handicapped persons to fostering opportunities 

in JTPA for economically disadvantaged 

persons who are handicapped 

It seems to make sense that economically 

disadvantaged persons who are Handicapped 

should, whenever possible, strive to access the 

JTPA slots for economically disadvantaged — 

where 90% of all the training slots exist. And, 

the special programs for handicapped persons, 

like Section 203, paragraph (a) (2), should be 

reserved for those handicapped persons in 

need of job training who might not otherwise 

qualify. This conservation technique should 

help to enhance the participation of disabled 

people in JTPA. 

A good example of this technique in action 

might be the utilization of whatever number or 

percentage you are able to obtain of the 10% set 

aside for non-economically disadvantaged 

(Section 203, paragraph (a) (2) for an area's 

handicapped youth program under Title II. 

Since handicapped youth who are from families 

who are not economically disadvantaged are 

not otherwise eligible for JTPA, their involvement can only be secured in this manner. 

Another example of conserving training slots 

for handicapped persons who might not otherwise 

qualify under the regular eligibility criteria 

(economically disadvantaged) seems to exist in 

Section 123 of JTPA. Here 8% of a Service Delivery Area's (SDA's) money can be matched 

by the local education agency and used to provide 

education and training, including vocational 

education services, to participants under Title II. 

The Governor has the discretion to determine 

who can participate in this program, based on a 

particular group's need for 

*NOTE: Governor may declare handicapped youth as 

family of one, according to a subsequent determination by 

the Secy. of Labor (see attached memo). 

"special assistance". The JTPA law does stipulate, 

however, that not less than 75% of Section 123 

funds be spent on economically disadvantaged youth. 

Hence, up to the maximum of 25% of Section 123 

funds can go for programs designed to serve 

handicapped youth and adults, if the Governor so 

decides. Again, in this example, any effort to target 

JTPA slots for handicapped individuals should be 

directed toward disabled youths and adults who would 

not otherwise qualify. This conservation technique 

can pay off with a larger overall involvement of 

handicapped people in JTPA. 

In addition to the suggested shift in emphasis to 

economically disadvantaged persons who are 

handicapped, and the conservation technique 

suggested above, accessing JTPA will depend on 

the direct involvement of handicapped persons 

and their representatives in two councils. The first 

council that should be courted is the State Job 

Training Coordinating Council. The purpose of 

this council will be to plan, coordinate and monitor 

programs funded within the state and through the 

JTPA Act. 

According to the Act, representation on the State 

Job Training Council shall be as follows: 1) onethird representatives of business and industry; 2) 

not less than twenty percent representatives of the 

State legislature, State agencies and State 

organizations (such as the State education agency, 

State vocational education board, State vocational 

education advisory council, State public assistance 

agency, State employment security agency, State 

rehabilitation agency, State veterans affairs 

agencies, State postsecondary institutions, and any 

other which the Governor determines to have a 

direct interest in employment and training and 

human resource utilization within the State); 3) 

not less than twenty percent representatives from 

local government, including PIC's; and 4) not less 

than twenty percent representatives from eligible 

population and of the general public, representatives 

of organized labor, community- based organizations 

(see definition for "community-based organizations" 

in definition section above) and representatives 

from local education agencies. 

Certainly the prescribed make-up or composition 

of the State council provides many possible entry 

points for those concerned with the training needs of 

handicapped persons. For example, an effort might 

be made to get the Governor to appoint a 

particular employer on the State council who has 

been active in and is familiar with the employment 

needs of handicapped people. While this person 

would occupy one of the employer slots, he or she 

could also be counted on to support the needs of 

handicapped persons. Additionally, representation on 

90 
behalf of handicapped people could be gained under 

the remaining categories, i.e. State rehabilitation, 

State employment security, State education agency 

(special education), etc. In other words, more than 

one ally should become directly involved in the 

State Council. 

Apart from the obvious value of becoming 

involved with this council in the statewide 

planning, coordinating and monitoring of JTPA 

funds, many close to the situation are predicting that 

these councils have the potential to do much more. It 

is anticipated with these bodies which will involve 

all the segments of the employment and training 

field in the particular State, can become excellent 

vehicles for the promotion of interagency 

cooperation. Additionally, they can become 

excellent platforms for the expressing of the 

statewide employment and training concerns of 

handicapped people. Obviously, we must get 

involved in the State councils. 

The other council that we are going to 

need to get involved with is the private industry 

council or PIC. Each State will have, perhaps, 

one or two dozen PIC's. Nationwide, it is 

anticipated that there may be more PIC's in 

business than there were CETA Prime Sponsors 

(360). And, they will be powerful. 

According to the JTPA law, one of the first acts 

of a State governor as he implements this program, 

will be to determine the number and location of 

independent service delivery areas, called SDA's. 

However, cities with a population of 200,000 or 

more, consortium of contiguous units of local 

government with a population of 200,000 or more 

and any concentrated employment program grantee 

for a rural area which served as a prime sponsor 

under CETA can demand from the governor that 

they be designated a SDA. Each SDA will have a 

PIC and the PIC will have the responsibility to 

provide policy guidance for and exercise 

oversight with respect to activities under the job 

training plan in effect for the SDA. 

The initial membership of the PIC will be 

determined by the chief elected official of the 

SDA. Thereafter, the PIC itself will determine its 

membership. Initial recommendations for membership on the PIC may be made to the chief 

elected official. 

JTPA does require that a certain ratio be observed 

with respect to the make-up of the PIC. Fifty-one 

percent of the members on a PIC must be from 

private industry. And, the chief elected official is 

required to select these initial members from a 

nomination list developed by the "general purpose 

business organization of the SDA" (i.e. the 

Chamber of Commerce). 

.

The remaining positions 

on the PIC will go to representatives of education 

agencies (all education agencies in the SDA), 

organized labor, rehabilitation agencies, 

community based organizations (see definition), 

and public employment service. 

Again, it would seem advantageous to attempt 

to have nominated for PIC membership employers 

who are involved in and understand the problems 

associated with the training and employment of 

handicapped people, as well as special educators, 

rehabilitation representatives, special educators, 

and local groups representing handicapped people. 

According to officials with the National 

Association of Private Industry Councils 

(NAPIC), it is anticipated that SDA's will be 

determined by States' governors during the period of 

March and April, 1983, and the PIC's will begin 

forming sometime during April and May, 1983. 

Hence, time is short if we hope to get involved 

from the beginning. 

One last word about the PIC's. In addition to 

their duties associated with the JTPA law, PIC's 

will be directly involved in completing area 

reviews or assessments of job training and 

employment systems. An effort should be made to 

insure that these area needs assessments specifically 

address the job training and employment needs of 

both handicapped youths and adults. 

In addition to the two councils (the State 

council and the PIC) there are two plans that need 

to be monitored. The first is the statewide 

coordination and special services plan. This 

plan will be prepared by the State's governor for the 

period of two program years and will establish 

criteria for coordinating activities under JTPA with 

programs and services provided by State and local 

education and training agencies (including vocational 

education), public assistance agencies, the 

employment service, rehabilitation agencies, 

postsecondary institutions, economic development 

agencies and such other agencies as the governor 

determines to have a direct interest in employment 

and training and human resource utilization within 

the State. It appears that this objective of the 

statewide plan would seem to offer those interested in 

the training for employment of disabled people an 

excellent opportunity to integrate JTPA programs 

with existing services so that they support or 

augment them. 

Another function of the statewide coordination 

and special services plan is to indicate any 

adjustments made by the government with respect 

to performance standards. Performance 

standards are important because they set the ac91 
countability for local program operations. And, 

variations in performance standards are possible and 

may be necessary for certain special populations 

(see Section 106 above). Hence, this dimension of 

the statewide plan will be important to monitor. 

Related to the governor's responsibility with 

respect to the preparation and implementation of 

the statewide plan is statewide 121 (c). Here 

examples of the governor's coordination and special 

services activities associated with this plan are 

offered. Two of them seem to hold a potential to 

groups interested in improving employment related 

services to handicapped youth and adults. They are 

item (3) and item (9). Item (3) suggests that the 

governor may, "provide programs and related services 

for offenders and other individuals whom the governor determines require special assistance". 

Item (9) States, "provide pre-service and in-service 

training for planning, management and delivery staffs 

of administrative entities and PIC's, as well as 

contractors for state supported programs." Item (3), if 

the governor so desires, could provide the basis for 

a statewide special program for handicapped 

persons based on their need for special assistance. 

And, item (9) could become an important element in 

a more general effort designed to prepare JTPA 

program operators to serve economically 

disadvantaged persons who are handicapped. The 

concepts and particulars of environmental and 

program access could be taught, on a statewide basis, 

utilizing item (9).

One last point, concerning the statewide plan, 

while the law does require that the State council 

recommend to the governor a statewide plan, it is the 

governor himself who is the final authority on the 

matter. Consequently, close association seems to be 

necessary both with the State council and with the 

office of the governor. 

The other plan that should be monitored as we 

strive to involve handicapped persons in JTPA 

programs is the job training plan. This plan is the 

local service delivery area's (SDA) plan spelling 

out how JTPA funds will be utilized for the next 

two program years. Responsibility for the 

preparation of the job training plan is shared 

between the SDA's chief elected official (i.e., the 

mayor or county executive) and the private 

industry council (PIC). Specifically, the law states, 

"the council (PIC), in accordance with an 

agreement or agreements with the appropriate chief 

elected official or officials shall determine 

procedures for the development of the job training 

plan, which may provide for the preparation of all 

or any part of the plan by the council (PIC), by any 

unit of general or local government in the SDA ... 

or any other agreed upon entity." 

The job training plan will include, among 

others, the following features: a description of the 

services to be provided; procedures for identifying 

and selecting participants and for eligibility 

determination and verification; performance goals in 

accordance with those established by the Secretary 

of Labor and the governor (including any 

variations in performance standards for special 

populations); the budget for two program years; a 

description of methods for complying with the 

coordination criteria established in the governor's 

statewide coordination and special services plan; and 

procedures for the preparation and submission of an 

annual report to the governor. 

In view of the importance of the job training 

plan, it would seem advantageous to identify the 

agreed upon entity in each service delivery area 

responsible for the development of the plan and to 

insure that someone appropriately represents the 

needs of economically disadvantaged persons who 

are handicapped as well as other handicapped youth 

and adults who might benefit from JTPA services. 

At the same time, groups concerned with the 

employment needs of handicapped persons should 

attempt to become involved in the review and 

approval process of each service delivery area plan. 

As prescribed in JTPA, a job training plan shall be 

published and made available for public review and 

comment not less than 120 days before it is to go 

into effect. Also, each house of the State's legislature, 

appropriate education agencies, and other public 

agencies in the SDA, and area labor organizations 

involved in the areas where training is proposed to 

be completed, are to be afforded the opportunity to 

review the job training plan. The final plan will be 

submitted to the governor not less than 80 days 

before the plan's beginning date. 

SUMMARY 

JTPA can serve both economically disadvantaged 

persons who are handicapped as well as other 

handicapped youth and adults, if persons or groups 

representing their needs make these needs known 

through direct involvement in the state and local 

decision making process. 

At the State level this means delivering input 

to: 

1. The Office of the Governor (and those on his 

staff responsible for developing the Governor's 

Coordination and Special Services Plan). 

92 
2. The State Job Training Coordinating Council. At the 

local level this means delivering input to: 

1. The chief elected official* of the SDA (i.e. 

mayor or county executive). 

2. The Private Industry Council* (PIC) of the SDA. 

*One or the other has lead responsibility for the SDA's Job 

Training Plan, the critical document determining how JTPA's 

monies are allocated for programs. 

93 
Transportation Panel

MODERATOR: PAUL A. MARCHAND 

PANELISTS: ROBERT C. ASHBY 

 ANDREA FARBMAN, PH.D 

 BRUCE M. OKA 

94 
Transportation Considerations 

for Citizens with Mental Retardation 

by Paul A. Marchand 

Director 

Governmental Affairs Office 

Association for Retarded Citizens/U. S. Washington, D.C. 

As I was thinking this morning about my opening 

comments, I began that discussion on the bus, which I 

take every morning and I thought, "Well, we're 

going from here, we're going to there" And I think 

that's really what this issue is all about, getting from 

here to there, whether we're going to work, whether 

we're going to school, whether we're going 

shopping, whether going out to play, whether we're 

going to go out and meet friends or relatives, it's a fact 

that you've got to go from here to there. Unfortunately 

for many persons with disabilities, the well known 

theme of "you can't get there from here" is all too 

frequently employed. I'm sure that PCMR has picked 

this topic because in fact you can't get here from there 

in many places. We've got to solve that problem. 

You cannot have full access to the community. You 

cannot have much independence if you cannot get from 

here to there, no matter what the circumstance is. 

Therefore, transportation is an absolutely critical part 

of the service system, the life system that must be in 

place for people, all people, whether they are 

handicapped or not. We can have a hundred people 

next door talking about special education and another 

hundred down the street talking about living 

environments, but if they can't get there without 

transportation, all of that can easily fall apart. 

For the majority of people who are mentally 

retarded, transportation may not be problematic. 

That is because most people who are mentally retarded 

are mildly retarded, and are identified as such 

primarily during their school years. School systems 

generally are responsible for transportation, either 

through specialized transportation or some other arrangements. While the children are special education 

students, they get to school. When they leave the school 

system, these individuals are basically assimilated into our 

general society. 

They are the people who will likely be able to 

obtain driver's licenses. They will be the ones who 

will potentially own cars and be able to get around on 

their own. Some won't, but the majority will. For 

those who won't, and for the remainder of the 

population which is mentally retarded, those from the 

moderate level to the most profound levels, will likely 

be transportation dependent, and they will likely be 

transportation dependent from the day they're born 

until the day they die. Transportation has to be 

arranged in order for them to access society, to 

access their community. 

There is, unfortunately, no national policy on 

transportation for people who are mentally retarded. In 

fact there is no general policy, generally, for people 

who are handicapped. There is no entitlement to 

transportation, as there is an entitlement to special 

education, or to cash benefits in this nation, if you are 

poor and so disabled that you cannot work. Since 

there is no such entitlement for transportation, 

something must be planned in order for people to 

profit from this service. 

We know that throughout this country there are places 

where transportation is probably the biggest issue, despite 

the fact that there is a variety of programmatic services 

available. If you can't get there from here, the services 

are irrelevant for you. Transportation is a key issue, a 

necessary issue that must be solved. There are many 

ways that one accesses transportation. There is private 

transportation, there is public transportation, and there is 

personal transportation. Who's responsible for all of that? 

This is a major issue that I hope we will discuss today, 

95 
because there is no pinpointed responsibility. Who's 

going to pay for it? Again, no pinpointed responsibility. 

Is access assured? 

Who is going to train individuals to be able to use 

whatever transportation is available. Transportation 

workers themselves need some training in order to 

understand the special circumstances that a good number 

of persons with. mental retardation present in order for 

them 

to get from here to there. We will discuss access to 

mainline transportation. We will discuss door-to-door 

para-transit type services that are necessary for some, 

as well as other transportation modalities. Since there 

is no national policy, one has to look, then, at what is 

the Federal role. 

There is a Federal role on this issue, and Bob 

Ashby of DOT will deal with that. I'm sure Andi 

Farbman of the National Council on the Handicapped 

will address that as well. We have at the moment 

several major controversial and exciting issues facing 

us in regard to the Federal government's policy 

towards transportation in regard to mental retardation. 

Bob Ashby can now pick up from there and talk to us 

about what DOT is or is not doing for this population. I hope you'll all be prepared to enter into 

dialogue with Bob at the appropriate time. Bob...

96 
DOT Legislation/Regulations 

and Their Resultant Affect 

on Mentally Retarded Citizens 

by Robert C. Ashby 

Deputy Asst. General Council 

Regulations & Enforcement 

Department of Transportation 

Washington, D.C. 

What I basically want to do this morning is give 

an update on development in our regulatory 

activities with respect to transportation to persons 

with disabilities. 

First thing I want to talk about is some litigation 

that is currently in process in Pennsylvania. As you 

know a year and a half ago, in 1986, the Department 

came out with some new and controversial 

regulations concerning transportation provided by mass 

transit agencies which get funding from the Urban 

Mass Transit Administration, or UMTA. 

That regulation briefly, in implementing the statute 

Congress passed a couple of years previously, listed a 

series of service criteria which transit authorities had to 

meet whether they provided service by acceptable bus 

or parent transit or some other kind of special service or 

some combination of all the above. But, then said 

pursuant to another court's decision of 1981 vintage 

that a transit authority in order to avoid having undue 

burdens imposed on it by this regulation would not 

need to spend more than 3% of its overall operating 

budget, in order to meet Federal requirements. Even if 

that meant that the service criteria were not fully 

implemented. 

We were sued on that issue by a couple of 

disability organizations, ADAPT and Eastern Paralyzed 

Veterans of America and early in January a district court 

again in Philadelphia found in favor of the plaintiff on 

the cost cap issue. The court saying that since the statute 

required minimum service criteria the cost cap provision, 

by permitting the service criteria to be complied to 

less than fully, resulted in the criteria not being truly 

minimum criteria and consequently, the regulatory 

framework that we had established according to the 

1986 regulation was not consistent with the statute. 

The court ordered us to redraft the regulations 

consistent with the court's opinion. We have 60 days after 

a court decision like that to decide whether to appeal it. We 

are still in the process of deciding whether or not as an 

agency we want to appeal it. The decision on whether or 

not to appeal it will be forthcoming in probably a few 

weeks. 

Pending either the completion of an appeal or the 

expiration of the 60 day period for filing an appeal, if 

we decide not to, we aren't told by the court that we 

have to stop enforcing the existing regulation or that in 

any way it's been vacated. The order as it now stands is, 

that if we don't appeal or if subsequently we lose an 

appeal, simply to rewrite the regulations consistent with the 

court's opinion, which means you don't have an across the 

board cost cap of this sort. 

There are a number of ways in which the regulation 

could be redone if that court decision goes into effect. 

One of them, the simplest, is to draw an X through the cost 

cap provision rule. That would result in a regulation that 

had a set of service criteria applicable to each of the 

modes providing transit, but did not have any limitation 

on the requirement that one comply with the service 

criteria even if it costs 10 or 15 or 20 percent of the transit 

authority's operating budget. 

The problem with doing that is that such a result falls 

inequitably on cities depending on what size city it is and 

what kind of transit we want to provide. Typically, 

according to the information that we've developed, it 

appears that providing paratransit service is in total dol97 
lar terms more costly than providing accessible bus 

service, especially for the operating cost. It's also 

however, a way of providing service that 

generates substantially more trips by people with 

disabilities than accessible bus services have done 

and consequently, while more costly, is also more 

cost effective if you have a cost unconstrained set of 

service criteria. One unintended adverse 

consequence may be that by saying you have to 

provide paratransit services that fully meets the 

service criteria without any cost constraint you may 

give some cities an excuse to switch to a less 

aggregate expensive form of providing service like 

accessible buses which, however, will provide less 

services to people with disabilities than a paratransit 

system with the cost constraint, so that is a policy 

consideration which we will have to look at. 

There's also an intermediate approach we might 

take which would be to remove the cost cap, as the 

court said, and to some degree lower the service 

criteria. So the service criteria are not as 

demanding in terms of costs for paratransit 

systems in small cities. You lessen the disincentive 

for providing paratransit on the other hand, that 

may have the unintended adverse consequence of 

allowing cities that are now providing special service 

at or near the service criteria level by enabling 

them to cut back on the quality of service that they 

provide. So, none of the choices is by any means a 

panacea. 

We are going to have to do some thinking and 

probably get some comments on what the best way 

to react to a non-cost cap situation if indeed the 

court decision goes into effect. So reacting to the 

504 litigation on the cost cap issue is, now the first 

issue that we're dealing with. 

A couple of issues are near the larger scheme 

of things subordinate in importance to the cost cap 

issue but of particular interest to folks interested in 

mental retardation. 

First of these is the service criteria for eligibility 

for paratransit under the rule. To redefine it, what it 

briefly said in response essentially to concerns about 

costs and a quality between the cost of different 

service options was brought up to us in the 

development of the regulation. 

We said that you have to provide service if 

you're running a special service system to folks who 

by reason of disability, are physically unable to use 

the regular bus systems. Providing service to people 

who by reason of a mental disability, but not a 

physical disability, aren't able to use the system is 

optional. So consequently there's a requirement 

service in effect for physically disabled folks; there 

is not a competent requirement for service to 

people who solely by reason of a mental disability 

are unable to use the regular bus system. For 

example, someone who may be moderately 

retarded, whose functional disabilities are such that 

he or she cannot remember where a bus stop is or 

how to get from point A to point B using the 

regular bus system. 

That obviously has been the source of substantial 

controversy. Some legislation has been dropped in 

the hopper vote the last session of Congress. A 

House member from Memphis dropped in a bill 

trying to address this subject. It was a bill to amend 

the definition of handicapped in Section 16 of the 

Urban Mass Transportation Act to include mental 

disabilities. The problem was the definition already 

included mental disabilities and amending the 

definition does nothing to amend the service criteria 

and this is where the problem is. 

Third item, is an advanced notice of proposed 

rulemaking, which the Department of 

Transportation wanted issued back in October asking 

questions about what kinds of additional 

accommodations, if any, should we require for mass 

transit systems in terms of better serving people with 

mental disabilities. And, for that matter people 

with other non-mobility disabilities, such as vision 

apparent, on the regular mass transit systems, 

better training for drivers, announcement of stops, 

different stops, those kinds of accommodations. 

We got back, I would estimate and I haven’t been 

through all of them yet, about 200 or 250 

comments on that subject from a variety of 

commenters, including disability groups and State 

and local transportation agencies, State rehab 

agencies and such. 

I've been through about 50 of the comments 

so far and if they are representative, what we 

have gotten in the comments is a statement of 

people's preferences, but not a lot of information 

which is exceedingly useful in helping us make 

regulatory decisions. That is to say, people have said, 

"Gee, yeah, we think better training is a great idea, 

we think announcing stops is a really good thing, 

we think bigger and better signs on buses to help 

people who have various degrees of vision 

impairments, for example, it would be really 

neat", and then you have transit authorities saying 

things like, "We do lots of this good stuff on our 

own, don't impose any new regulations telling us to 

do it." 

The problem is that none of these comments that I've seen so far have really addressed 

to what extent there is a problem which needs 

to be addressed by regulation, to what extent 

particular means are feasible, to what extent 

particular accommodations are really effective 

98 
in addressing whatever problem exists. What are the 

cost implications, if any of the various 

accommodations are suggested? So if the rest of the 

comments, I'm hoping this is not the case, turn out to 

be like the first 50 or so I've been through, I will have 

information about preferences but not necessarily 

information about the utilities of particular 

accommodations that we're thinking of. 

Fourth item is air travel. Air Carrier Access Act of 

1986 directed us to develop new regulations to ensure 

non-discrimination on the basis of handicapped in air 

travel consistent with the safe carriage of all passengers. 

Most of the specific issues in the rulemaking, and we 

address these via what's called regulatory negotiation, 

we had an advisory committee made up of representatives of the major disability groups and the 

airline industry. 

Most of the issues that we addressed in specific 

terms dealt with accommodations for people with 

mobility impairment and to some extent vision and 

hearing impairments. There isn't much in the way of 

specific issues in this rulemaking that tune indirectly on 

people with mental disabilities as opposed to people 

with other kinds of disabilities. We did have one 

member of the panel who is knowledgeable in the 

mental disabilities area, Curt Decker from the 

National Association of Protection and Advocacy 

Systems. 

There are a few things obviously there are general 

non-discrimination provisions that apply across the board 

and go to such things as not requiring people to get 

services they don't want. The old business about the 

Boy Scout helping the old lady across the street, 

whether or not she wants to go has been a problem. So 

folks with disabilities have faith in air travel for a 

long time. People who are sometimes overzealously helpful to the point of being patronizing, 

giving special briefings to passengers who they 

perceive to be disabled or in some cases giving them 

a quiz, "Could you show me that you really know how 

to fasten your seatbelt?" 

There is a section that we're working on that 

would, for example, limit requirements that a disabled 

person have an attendant to travel with them. The 

one specifically that might affect some of us, a 

mental disability, is that someone who could not 

comprehend or respond appropriately to a safety 

related instruction to a stewardess or a pilot or 

whoever, might be required to have an attendant. But 

aside from that, the fact that they look different or 

engaged in annoying behavior so long as the 

annoying behaviors did not rise to the level of 

creating a safety problem, would not be grounds for 

requiring an attendant to kick somebody off the plane. 

I think one of the most important things that we 

all very much agreed upon in this rule- making effort is 

that carrier personnel often will receive more training 

on how to deal with individuals with disabilities. 

One of the biggest problems that persons with 

disabilities have had in flying is that while more and 

more people with disabilities do fly, the number of 

disabled folks who fly is a relatively small percentage 

of all passengers. There's a relatively high turnover 

of people at the ticket counter and people at the gate 

and those who take reservations and so it is not all that 

uncommon for a person even with a relatively 

common type of disability to show up at an airport 

and run into a gate agent who has never seen a person 

with this type of disability before at least in the context 

of work. 

So we hope that by including training provisions, 

that we can get the carriers to do a better job by training 

their employees to assist persons with varying 

disabilities. 

99 
Transportation for Mentally and Physically 

Handicapped Persons 

by Dr. Andrea Farbman 

Director of Public Affairs 

National Council on the Handicapped Washington, D.C 

I am responsible for covering transportation for 

the National Council on the Handicapped. It's really 

a pleasure for me to be here. It's a dubious honor to 

be sitting to the far right of DOT, though. 

The first thing I want to do is to refresh your 

memory about the Council. The Council is an 

independent Federal agency that's comprised of 15 

Presidential appointees who are confirmed by the 

Senate. It was originally established in 1978 under 

the Rehabilitation Act as an advisory board under 

the Department of Education, and I say that literally, 

under the Department of Education. The Council 

found that in that kind of hierarchy, it really couldn't 

get anything done. It couldn't do policy for the Federal government being underneath the Department of 

Education. In 1984, as an amendment to the 

Rehabilitation Act, the Council became an 

independent Federal agency with the authority to or 

responsibility really, to advise the President and 

Congress on disability policy issues. We have 5 

professional staff members and for Fiscal Year 

1989 we'll have just under a million dollars. 

Our members' statutory responsibilities are quite 

broad. At the current time we have 10 statutory 

responsibilities that range from establishing general 

policy for the National Institute of Disability and 

Rehabilitation Research, which used to be the 

National Institute on Handicapped Research, to 

advising the President and Congress on any 

disability issue. For example, if a particular 

Congressman or the President is interested in 

employment or transportation or recreation for any 

disabled person, we might be asked to respond. 

We're really the only Federal agency who has that 

kind of cross-cutting responsibility at a policy level. 

That gives us a huge ball of wax to try to carve out 

and to try to really do some meaningful work. 

From time to time we struggle with trying to set 

priorities in a meaningful way. 

In terms of what I'm going to talk about for 

transportation, I think it's important to remember 

that transportation policy at the Council has related 

to not just people with mental retardation or people 

with developmental disabilities, but has tried to 

address transportation from the standpoint of all 

persons with disabilities. 

What I want to discuss today is two Harris polls 

that the Council initiated and was involved with 

and two of the policy documents that I passed out 

to give you an idea of what the Council policy is. 

Paul Marchand, panel moderator, said there is no 

national policy on transportation, I think the Council 

believes that we have a national policy on 

transportation, I think it's fair to say that the 

implementation of that policy is certainly haphazard 

and not as consistent, or not as comprehensive as 

we would like it to be, but certainly in terms of 

policy issues we feel that we have a policy 

etched out. 

How many of you have heard about the first 

Harris poll that related to disability? Back in 1986, 

the Council was mandated by Congress to do an 

analysis of Federal disability policy. At that time 

when the Council was looking at a lot of data that 

existed, and certainly a lot of contradictory data, a 

number of Council members discussed the fact 

that what we really needed was a Harris poll, not of 

service providers, not of bureaucrat like ourselves, 

but actually trying to find out from persons with 

disabilities what their perception of their life 

is in a very global sense. So, the Council initi100 
ated a Harris survey and the International Center for 

the Disabled in New York subsequently contracted 

with the well known firm of Louis Harris and 

Associates. 

This is a copy of the survey; I'm not going to 

go into great detail. If you want to get copies, 

contact ICD at 212 (679-0100). 

This survey called "Bringing Disabled Americans 

into the Mainstream" was the first ever attempt to 

have a nationwide random sample of persons with 

disabilities talking about their own lives. The 

Harris survey team had to screen 15,000 

households in their normal way. They actually wound 

up with a sample of 1,000 people. Within that 

sample, approximately 3% of the people responded 

that either they were themselves mentally retarded 

or that they had a family member who was 

mentally retarded. So the 3% figure which is 

commonly used was confirmed by the survey. 

In terms of transportation, you might be 

interested that a large majority, over 50% of the 

sample, stated that their disability prevents them from 

getting around, from socializing or just going out as 

much as other people and that the actual problem of 

transportation was a deterrent in a lot of daily 

activities. A majority of respondents, almost 50%, 

believed that their mobility is limited because they 

can't use public transportation, because they can't get 

special transportation, or because they can't even get 

someone to give them a ride. Fifty percent of the 

sample is statistically very significant. Also, 3 out 

of 10 people said that the lack of affordable, 

accessible transportation is a major reason why 

they're not working. 

Transportation is an important issue. I think a lot 

of times transportation is seen as a very secondary 

issue. We tend to focus on education or 

employment; but I don't think it's quite that simple. I 

think all of these things are very interrelated and 

there's actually a complexity. Obviously, 

transportation is a major ingredient in employment, 

in recreation and in education. 

The second survey was done as a follow-up 

related to the fact that the first Harris firm survey 

found out that literally two-thirds of all persons 

with disabilities were unemployed. A follow-up 

study on employment was done which again refers to 

transportation. It doesn't have anything in it 

particularly relevant to what we're talking about 

today, so I'll just mention it. As well as mentioning 

the fact that a third Harris poll is being done right 

now focusing on education and that sample is going 

to include children with disabilities, parents of 

children with disabilities, and educators. 

In 1986, the Council had this huge "invitation" 

really. A mandate, I don't think it's ever been called 

an "invitation" before, from Congress, to assess 

incentives and disincentives to community integration 

and independence of persons with disabilities. 

The Council set about quite ambitiously 

holding a lot of public meetings, public forums, 

talking to a wide variety and a large number of 

disabled consumers throughout the country and 

actually asking them, "What are the problems you're 

having?", "What are the major issues facing you?" 

That's when the Council came up with their first 

report in 1986 called Toward Independence. 

This report has 10 topics areas, one of which is 

transportation. The conclusion that was reached in that 

report was obviously, as we've said several times 

before, that transportation is a critical ingredient to 

independent functioning and that people with 

disabilities are not going to be able to achieve 

independence in society without accessible 

transportation. 

The Council really went further than that in

their report and recommended a national policy of 

fully accessibility. For example, fully accessible 

mass transportation. There were 5 areas within 

transportation and all this is in the handout of 

recommendations from Toward Independence. The 

first one being Urban Mass Transportation. The 

second one being Air Transportation. The third one 

being Inter-City and Inter-State Buses. The fourth 

one being Private Transportation. And the fifth one 

being Research. 

I'll just go through those and talk briefly about 

what we recommended. I'll also talk about where 

we are today in terms of those recommendations. 

That's really what the second report, On the 

Threshold of Independence, which is just being 

released this week, is about. 

The image of On the Threshold of Independence is sort of looking at all of the recommendations, the 45 recommendations, that were made 

in the first report and saying, given that sort of 

global picture the Council views persons with 

disabilities as being on the threshold of 

independence, sort of being close to independence, 

but not quite being there. And I think that analogy 

fits in a lot of different areas, to say that on one 

hand we have some progress, on the other hand 

we still have a distance to go and that the progress 

really shouldn't obscure the fact that there still is a 

distance to go before we reach total independence or 

at least independence at a level that is satisfactory to 

people with disabilities. 

Going back to Urban Mass Transportation, the 

very first recommendation that the Council made 

was to amend Section 16 of the Urban Mass 

Transportation Act to require full accessibility within a 

reasonable amount of time. Bob Ashby, Department of 

Transportation, mentioned the 504 regulations, the 

101 
cap situation which obviously the court has dealt with 

to a degree. 

Another problem that the Council has concern 

about is a private right of action. When Bob Ashby 

mentioned that Senator Cranston had dropped a bill 

in, it had several pieces to it, one of which was a 

private right of action. Although that hasn't gone any 

further, at least we have had some discussions with 

people on Capitol Hill and there is movement in that 

direction. 

Another issue that hasn't been discussed much is 

the monitoring of the Urban Mass Transportation's 504 

Transition Plans. Just this summer several disability 

organizations did a Freedom of Information Act public 

information inquiry and were able to get to look at 

the 504 Transition plans to actually begin to see what 

is happening. It looks great on paper but how are local 

transit authorities attempting and planning to comply? 

To comply in terms of people with mobility 

impairments, in terms of people who are mentally 

retarded. What are the plans; and what is the extent of 

the coverage? That analysis is quite lengthy. Do you 

have any idea how many plans? I've forgotten their 

exact number but I know there are several hundred. 

The number of 504 Transition Plans in rough terms is 

around 350 to 370 and that analysis is just beginning. 

Another recommendation within Urban Mass 

Transportation that certainly has been suggested is that the 

Department of Transportation should be a standard 

setting agency in terms of transportation accessibility 

under the Architectural Barriers Act of 1968. 

Bob Ashby was talking before about regulations. 

The Architectural Barriers Act does not allow DOT to 

set standards and that was a recommendation in our 

1986 report and, as far as we know, there hasn't been 

any progress made on that. 

The second area is Air Transportation. The major 

recommendation the Council made related to 

amending the Federal Aviation Act to prohibit 

discrimination based on handicap. That was not done per 

se, what was done, was the passage of the Air Carrier 

Access Act. I think that the Air Carrier Access Act 

was a major accomplishment. However, that's not the 

end of the story. I mean the regulatory process, the 

process that Bob has been through for the last six 

months looking at all the specific items that relate to 

people with mobility impairments, that relate to people 

with mental retardation and trying to assure that air 

travel is as accessible as possible for the widest variety 

of people with disabilities and believe me, that's no 

small task. I know that the Council is looking forward 

to seeing the notice of proposed rules that Bob says 

will come out probably some time this spring to 

actually see how they're going to implement that Act. 

The Act winds up being one page and the regulations 

will probably wind up being over 100 pages. 

The third area that the Council commented on was 

Inter-City and Inter-State buses. Inter- City and InterState buses being private are able to, if they choose to, 

discriminate against people with disabilities. The 

recommendation was that through interstate 

commerce that Congress should extend nondiscrimination coverage. Interstate commerce would 

cover interstate buses and therefore, buses would not 

be able to discriminate against persons with disabilities. 

In a particular sense that has not been done. 

Let me just mention at this point that the 

Council's major recommendation that came out of 

Toward Independence was the enactment of a 

comprehensive equal opportunity statute for persons 

with disabilities. At this point the Council has drafted a 

bill and it's part of On the Threshold of Independence. 

The title for the bill is "The Americans with 

Disabilities Act of 1988." 

Next week, as a matter of fact, the Council is 

going to be refining the bill with another group of 

disabled consumers and professionals and actually 

putting the finishing touches on what they want to 

propose and then deal with relevant Congressional 

people, obviously, the Subcommittee on the 

Handicapped and others to talk about "actually 

dropping the bill some time this year". 

Within that bill there would be coverage that 

would include non-discrimination coverage for 

interstate commerce. Therefore; this provision about 

inter-state and inter-city buses, would be covered if, 

the Americans with Disabilities Act as it is proposed 

currently, were to pass.

The fourth area that the Council recommended in 

terms of transportation policy related to Private 

Transportation. Recognizing that not everybody in the 

world is going to take public transportation, and that 

for persons with disabilities private transportation is 

as much an option as for other non-disabled persons; 

the recommendation was that low-interest loans to assist 

persons with disabilities and their families to either 

purchase vehicles and/or modify vehicles and that a 

low-interest loan program be established. Again, 

there's no progress, we have had some talks with 

people on Capitol Hill about this. I think that the 

climate for having low interest loan programs is not 

exactly great. 

However, I can say that we have talked with 

a number of automobile companies that are 

attempting to reach out to customers with 

102 
disabilities. Chrysler just met with us several 

weeks ago and they're doing a plan that involves free 

modifications. They are very committed to doing 

modifications on private vehicles. They are within a 

certain scope. They are wanting to do those 

modifications for either no cost or a very low cost. 

In terms of action, there's some action in the private 

sector, but there hasn't been any action from the 

Federal Government.

The final area is that of research. I think frankly 

that one of the problems that has plagued 

transportation has been that the research has been 

flawed and the research has been weak. I think it is an 

area that is difficult to do research in. It's difficult to 

know how many people are riding the buses, and how 

many times. I think too often in studies like that they don't 

get valid data. Because there's been weak data, often 

people have said, "Well you can't substantiate your 

claim. You can't substantiate that you need this; you can't 

substantiate why we should spend this money", and so 

they say, "So we're not gonna do it." Again, the Council 

felt very strongly about that. We needed much better 

research and actually the Council attempted to get some 

amendments within the Rehabilitation Act for DOT to do 

some additional studies. But, for a variety of political 

reasons, that never happened. 

We are still hoping at this point that the 

Compliance Board (ATBCB), whose statute and 

responsibility clearly falls within the area of doing 

research in terms of transportations and disabled 

persons, would hopefully address more valid kinds of 

research studies. The Council plans to meet with the 

Board to try to encourage some of this to happen. 

In summary, in terms of the policy statement, that 

the Council made about transportation, there were 6 

recommendations in 5 different areas. Our scoreboard 

tells us that one of those was fully accomplished, three 

of those were partially accomplished and with regard to 

two of those, there really has been no substantial 

activity. Just as the Council said in 1986 that 

transportation is critical to independence, and it's critical 

to community integration, and it's critical to the quality of 

life for persons with disabilities, all of these statements 

remain true. We have made some progress, but there's 

still a long way to go. 

Thank you. 

103 
San Francisco Municipal 

Railway (Muni) Serving the Handicapped 

by Bruce M. Oka 

Equal Employment Opportunity Specialist 

Department of Health and Human Services 

Office for Civil Rights 

San Francisco, California 

What I'm going to be discussing, I'm 

employed by the Department of Health and 

Human Services with the Office for Civil Rights and 

as part of my outreach activities with my office, I 

have been asked to provide technical assistance on 

access issues regarding access to community 

services, transportation being one of those, so I 

hope this presentation will help you and I'm glad 

that Bob Ashby is here from the Department of 

Transportation because a lot of what I'm going to 

say is going to be rather newsworthy or 

noteworthy to a lot of you because of the San 

Francisco Municipal Railway Service (MUNI). 

While I'm talking, I'm just gonna have Randy 

handle the slide show. In San Francisco, we have 

one of the unique situations where the San 

Francisco Municipal Railway Service provides 

fixed route accessibility on 16 of its major routes 

in San Francisco. What that means basically is that a 

person like myself, who relies on his independence 

and ability to get from place to place by himself, 

can do so. 

I use the fixed route transportation every day 

and throughout the daily course of my job. One of 

the thing that's unique about the San Francisco 

Municipal Railway, (and we lovingly call it the 

"MUNI") is that it has several lines that are 

equipped with lifts that are 95% reliable, in other 

words, the malfunction rate is very low on these 

lift equips. Also, noteworthy is that California is 

one of only two States in the country that have a 

legislative mandate that all transportation in this State 

be accessible. 

That legislation specifically says that all buses 

purchased, all new buses purchased have to be lift 

equipped and accessible to persons with mobility 

impairments. My normal day I go from my home, 

get on the bus to go downtown and if I wanted to, 

I could get from my home to almost any place, 

anywhere in San Francisco without any problem 

whatever. 

There are only a few neighborhoods in San 

Francisco that are not reached by the fixed route. 

These buses, if you haven't seen the inside of 

them, are all set up with securement devices in 

which the wheelchair locks into and it's perfectly 

safe. There's no danger of the chair slipping out and 

one of the keys to providing this kind of access 

MUNI is one of these transportation systems that not 

only meets the percentage criteria that shouldn't be 

there anyway, but it exceeds it in many instances, 

and it exceeds it by quite a margin. 

One of the reasons that MUNI services to the 

disabled are so good and so reliable is that I'm one 

of the Co-chairs of the MUNI Elderly and 

Handicapped Advisory Committee and it took us a 

long time to get the powers that be to listen to us 

but the result of their having sat own at the table to 

discuss this whole thing with us has afforded us 

with the amount of accessible transportation that 

we have. 

Right now I believe that San Francisco and the 

San Francisco Bay area has the most accessible 

transportation in the country, if not the world. We 

not only work with the MUNI management staff, 

but we work with the drivers. 

One of my fun things to do is every six 

weeks, MUNI provides training, sensitivity training 

to its newly hired drivers, and they devote one full 

day to problems and situations which face the 

disabled and I think that is the key. You have to 

provide sensitivity training to your transit operators, 

the people who actually operate the buses. 

This is just showing you how the lift itself 

works. There are different lifts on the market, but 

this lift that MUM has on all its accessible 

104 
buses seems to be the most reliable, they're 

rugged, and nobody’s complained about them. 

I know because, you know, Andi was saying 

it's kind of hard to estimate how many people ride 

the bus. Well MUNI sends out surveys on, I believe, 

a quarterly basis to see how many rides on the bus 

were taken, which bus lines were used, and we keep 

statistics like that on a pretty regular basis. 

At all times the advisory committee has key 

input, as a matter of fact, MUNI management 

doesn't do anything relative to access issues without 

consulting the advisory committee, and if the 

advisory committee doesn't agree with something 

that MUNI proposes, it doesn't happen. 

I think that one of the reasons that we have a 

problem such as we do for disabled, and this is me 

getting into another mode of our transportation. 

This is our light rail vehicular travel. We have 

wayside platforms that make the metro accessible 

to us, as you can see I've gotten on, and you can 

wait for the bus, you can see the graffiti. Graffiti is 

common wherever you go. I haven't seen a city 

in the United States or over in Europe that doesn't 

have graffiti on its transit system. 

When we talk about fully accessible 

transportation we have to keep in mind that there 

are some people that will not be able to use it, no 

matter how accessible you make the fixed route 

system. There are going to be some people who are 

not going to be able to, for whatever reason, use 

that system. They may not be able to get to the bus 

stop, or whatever the case may be. 

I think one of the points, I think Bob and Iare going to get into a little bit of a discussion later 

about how to do this, but I think that what MUNI 

does should be tried all over the country and 

implemented all over the country in that what 

MUM does is provides fixed route accessibility and 

their promise to us and their goal is 100% fixed 

route accessibility. That includes the trolley 

coaches, the metro, not all of the metro system is 

accessible because some of it is above ground and 

we haven't gotten all of the above ground stops 

accessible yet, but that will happen. I think that 

one of the ways to do this is to not have, as the 

Department of Transportation has, a local option 

which is the favorite phrase of the American Public 

Transportation Association. 

In 1979, the Congress passed a law mandating 

on the Federal level that all new purchases of 

public transport vehicles be lift equipped. That law 

was rescinded by Congress mainly due to the 

American Public Transportation Association 

(APTA's) opposition to it. 

APTA's saying to provide full fixed accessibility would be much too costly because they 

would have to fix all of the old metro stations and 

the cost would be up in the billions. I don't know 

where they got their figures, but what the disabled 

community generally is asking for is and this is our 

paratransit system which this whole transportation 

system is managed by the Municipal Railway, and 

the estimated cost per trip for a paratransit vehicle 

is $17.00 per person. Multiply that times the 

number of rides that I would have to take per day, 

not to mention per week on this system, were it 

not for fixed accessibility, the cost would be 

astronomical. 

There are, of course, some places where I 

would not be able to get to and in those cases, I 

do call the paratransit service to provide that to me, 

but basically my mode of transportation is by fixed 

route transit, and I enjoy it. 

One of the other things that's harder to do as 

Co-chair of the Advisor Committee is that I get to 

go out with the first-time bus users and show them 

how to use the bus safely, what to do if certain 

situations arise, what not to do and how to 

respond to the public who may not know or may 

be afraid to express how they feel about having us 

on "their buses" and that's an attitude that a lot of 

us are going to face. You guys have your own 

pick-up service, why don't you use it? You know, 

and if we all took that attitude, nobody would get 

anywhere. I think this is some of the things that we 

have to work to break through these kinds of 

attitudal barriers. 

Most of the barriers that are put up for our 

access to transportation are attitudal. They're not 

physical, they're not cost, they're, I'm going to tell 

you an interesting little story. 

During the American Public Transportation 

Association's Annual Conference back in 

September, which was held in San Francisco, the 

President of APTA, or the Vice President 

of APTA, who shall remain nameless because he 

might come after me if I mention who it was, 

likened access to transportation to, well, just 

because I have a million dollars, is it your right 

to have a million dollars, too? 

This is the kind of attitude at the top level of 

these associations that cause the problems that 

we have and you know, he also said, "Well, in 

Buffalo, New York, it wouldn't be practical to 

have lifts on all these buses because they 

wouldn't operate in the snow. Well, who 

operates in the snow? I want you to ask yourself, 

who can easily operate in the snow, anyway? 

Whether or not you're disabled or able 

105 
bodied, you don't operate well in foul weather. So 

that's not a good analogy. 

You know, and for people to say that air transit 

is preferable to fixed route accessibility because to 

provide full access to public transportation would 

cost too much, let me tell you that to purchase a bus 

with a lift on it only adds 5% to the cost of the 

vehicle. Now, when you contrast that and the lifts 

we have on MUNI require very little 

maintenance, they don't break down because a 

system that's used a lot, if you have the system out 

there, it's gonna be used. The reason you don't have 

the numbers to show the need is because you don't 

have good service. If you don't have good service, 

you’re not gonna get used. 

I wouldn't use a bus system that only provides 

me one out of every five buses with a working lift. 

I'd be discouraged. MUNI ought to be proud and 

alleviated. 

MUNI's attitude was not always this good. It 

took a lot of fighting. A lot of people had bloody 

noses and hurt feelings and I went out with my picket 

signs and blocked buses, so it does take some effort 

on our part to make this system accessible, and to 

make people understand that we're part of this 

society, too. All we're after is an equal opportunity 

to participate in it. 

This, gentleman, is the Manager of the 

Elderly and Handicapped Program's right hand 

person and I discuss MUNI's plans with him on 

a regular basis and the committee meets on a 

once every other month basis, but my involvement with Access to Public Transportation goes 

far beyond MUNI, because I'll tell you, if I was 

living here in Washington, DC, their transit system would be much better than it is, believe 

me, because I would be in the Senate chambers and the House chambers every day until 

it was. I think I'd have quite a bit of help. 

We took slides to show just how convenient it 

is to get from place to place. Somebody actually 

walked with me through a typical day for me. I use 

the accessible transportation system. The last count 

they had, I took 135 trips during the course of one 

month. That's one month. You multiply 135 trips 

times $17.00 if I were to use the paratransit system 

and our paratransit system by the way is a very good 

one. It provides service daily. It runs for 12 hours 

instead of the normal 9 to 5 or 7 to 5. Some of the 

paratransit systems close at the close of the business 

day. That's not when we finish our activities. We do 

do more than just go to work and come back, or go 

to the hospital and come back. That's something that I 

think people need to realize, too. 

But I think the key here is first of all to listen 

when we tell you how we would like to see 

transportation for us. Also the exchange of dialogue 

and ideas I think is a very major consideration 

because without the input from the disabled 

community and without MUNI's willingness to listen 

to us, and they weren't always willing to listen to us 

either, so it hasn't always been, one thing I should 

mention before I forget to do so, is that these are 

pictures from the recent APTA convention and one 

of the things that the Advisory Committee did to help 

the San Francisco police department deal with the 

demonstrators that they were going to encounter was 

to give them sensitivity training on what to expect 

from a person, like myself in a wheelchair, who 

might be resistant to being arrested, so we did show 

them how to handle the wheelchair without breaking 

it. We made it a point to be very clear that if they 

broke one of the wheelchairs that they would probably 

be taking away a person's mobility for quite a 

while. So it was very important for us to really stress 

to them the importance of maintaining the 

equipment without breakage.

This is my office and my office has been very, 

very conscious about community involvement of this 

staff and this is why they have told me to take as 

much time as necessary to provide this kind of, 

what we call technical assistance to these community 

agencies and service providers on how to provide 

access. 

Access is not a privilege, it is a right of every 

human being and we just have to make sure that 

everybody knows, that I have just as much right to 

get from place to place as you do. Or that a person 

with a mental disability has just as much right to ride 

the bus and know how much change to put in the 

fare box as you or I do. 

106 
Education Panel

MODERATOR: ANN P. TURNBULL, ED.D. 

PANELISTS: MARY A. FALVEY, PH.D. 

 WILLIAM E. KIERNAN, PH.D. 

 MURIEL W. O'TUEL, PH.D. 

107 
The Individual Family Service Plan: 

What Does It Mean for Families 

by Ann Turnbull and Rud Turnbull 

(Presented by Ann Turnbull) 

Public Policy Fellow in Mental Retardation 

Joseph P. Kennedy, Jr. Foundation 

Washington, D.C.

We are excited about the new expectations 

and possibilities for family support through the 

individual family services plan (IFSP) and want to 

share with you the reasons for our enthusiasm. As 

parents, we have a keen appreciation of what this 

support will mean for families as they begin their 

marathon of family life; and as professionals, we 

know the shared commitment of wanting to make a 

relevant difference in the lives of youngsters with 

disabilities and their families. The IFSP provisions 

enable both families and professionals to meet their 

goals in the best interests of the children they serve. 

We will highlight briefly four aspects of the 

legislative provisions that converge in the IFSP: goals, 

service definition of early intervention, nature of 

assessment, and family outcomes. 

GOALS 

Two of the four goals stated in P.L. 99-457 

particularly pertain to family outcomes. These goals 

are as follows: 

 To minimize the likelihood of institutionalization 

of handicapped individuals and maximize the 

potential for their independent living in society, 

and 

 To enhance the capacity of families to meet the 

special needs of their infants and toddlers with 

handicaps. 

The first goal of maximizing the potential for 

independent living in society is best accomplished 

when families are supported to stay intact and to 

work for community integration. What do we mean 

by community integration? We mean people with 

disabilities living, working, socializing, and 

enjoying leisure in regular community settings where 

natural interactions with people without a disability 

occur. 

The goal then is to maintain family relationships 

living within family settings so that people with 

disabilities can have their best access to long-term 

integration as adults. 

The second goal relates to enhancing the 

capacity of families to meet the needs of their 

infants and toddlers. We suggest a long-term view 

of conceptualizing needs. For far too long we have 

had the tendency to view early intervention as an 

"era" in and of itself somewhat separated from what 

happens later on in the child's life. Early 

intervention is the beginning of the child's education, 

and most people in society agree that the purpose of 

education is to prepare citizens to live and work in 

society across their entire life. Thus, the goal of 

enhancing the capacity of families to meet the special 

needs of their infants and toddlers should involve 

teaching critical skills that will evolve overtime to 

adult competence and community integration. 

The IFSP is the means for translating these two 

goals into a relevant plan for each family. The plan 

is designed to serve the child within the context of 

serving the entire family. 

EARLY INTERVENTION SERVICES 

One of the particular services to be considered 

for the IFSP is "family training and counseling". It 

is significant to note that the word, parent, in P. L. 

94-142 has been replaced by the word, family, in P. 

L. 99-457. This is not just a semantic difference, but 

rather suggests providing services to a much broader 

array of significant people in the child's life. 

ASSESSMENT 

P.L. 99-457 requires that each IFSP include 

"a statement of the family's strengths and needs 

related to enhancing the development of the 

108 
family's handicapped infant or toddler". The 

greatest opportunity that we have with this 

requirement is to move with relevance and rationality into developing a means to assess family 

strengths. As we have reviewed the state of 

assessment in early childhood education, we have not 

found an instrument that has been developed and 

validated to assess strengths; however, there are a 

multitude of instruments to assess needs, problems, 

and stresses. We have an opportunity to move from 

a pathological focus to one that is balanced, and 

we should move ahead vigorously to developing 

our best models of family assessments in the area of 

strengths, as well as needs. The goals for family 

support — preventing institutionalization and 

enhancing the family's capacity to meet the child's 

needs — must guide the conceptualization and 

implementation of assessment; simultaneously 

assessment of family strengths and needs must be 

linked to the statement of family outcomes as 

discussed in the next section. 

STATEMENT OF OUTCOMES 

The IFSP must include a "statement of the major 

outcomes expected to be achieved for the infant 

and toddler and the family, and the criteria, 

procedures, and timelines used to determine the 

degree to which progress toward achieving the 

outcomes are being made and whether 

modifications or revisions of the outcomes of the 

services are necessary." Thus, outcomes for 

children and for families should be established. 

Family outcomes can be thought of as the objectives 

or intermediate steps in accomplishing the family 

goals of supporting the family to remain intact and 

avoid institutionalization, and to increase the 

family's ability to meet the child's needs. 

We believe that parenthood of a child with a 

disability can be likened to a marathon and that a 

major problem with early intervention in the past is 

that it has regarded parenthood more as a sprint to 

the child's first grade year. 

The outcomes for families incorporated into the 

IFSP should support the family to remain intact 

overtime and to meet the developmental needs of 

the child overtime. In taking a marathon view of 

family life, we like to apply the concept of the 

criterion of ultimate functioning that has been 

developed in the education of students with severe 

disabilities to specifying outcomes for families. 

We need to think very carefully about the 

expectations of the environments in which families 

will function, identify critical skills for success, 

teach those skills early, and enable families to be 

successful at each stage of the lifespan. The 

identification of marathon skills, based on the 

criterion of ultimate functioning, should be a 

collaborative effort involving families, researchers, 

and service providers. Examples of marathon skills 

that we think are important to consider include 

learning to identify and prioritize family needs; 

exploring what it means to love unconditionally a 

family member with a'disability; learning to 

establish supportive and responsive relationships

with family, friends, and professionals; learning to 

benefit from emotions; learning to solve problems 

and "take charge" of one's life; learning to plan for 

the future; and learning to establish balance within 

family relationships and responsibilities. As the 

field identifies the crucial marathon skills related to 

family goals, those skills can then be incorporated 

into assessment processes for identifying family 

strengths and needs, and into specific support 

services. 

In summary, we believe that the IFSP can be the 

catalyst to develop a lifespan and future- oriented 

perspective of family support. Within this view, 

early intervention can be thought of as the 

launching pad to life within the family and 

community. From this launching pad, infants and 

toddlers with disabilities can grow, within the 

context of family life, to become competent 

adults living as integrated community citizens. 

109 
Special Education 

by Mary A. Falvey, Ph.D. 

Professor 

School of Education 

Division of Special Education 

California State University, Los Angeles 

I want to first commend the President's 

Committee for sponsoring a conference on 

community integration. This topic is so crucial today. I 

also want to thank the committee for extending me 

the invitation to present on special education issues. I 

thought I would provide you with a historical 

perspective of educational services from where they 

have been, where they are, and where they appear to 

be going. The focus of my comments will more 

directly apply to those children and young adults with 

severe mental retardation since the majority of my 

work has been with those students. 

I have not assigned dates to this chronological 

historical perspective since it has varied and continues to 

vary across the country. Some time back, in the 

1940's and 1950's there were no programs and for 

many families the only option was an institution. 

Several factors began influencing services and 

programs. First, parent advocacy organizations became 

influential and effective in the development of 

school programs within local communities so 

children could remain at home and receive services 

from the schools. In addition to the development of 

advocacy groups to influence these changes, 

researchers were studying the learning characteristics 

and learning potentials of children and young adults 

residing in these institutions. Their findings, indicating 

that persons with mental retardation could learn 

provided a more scientific rationale for the 

development of programs in the communities. 

These two influences, i.e. parent advocacy and 

research on learning led to the development of 

segregated schools, i.e. handicapped only schools that 

used a "watered-down" regular education and/or 

developmental curriculum. The curriculum resulted in 

teaching nonfunctional skills in artificially contrived en 

vironments. It placed emphasis on the student's 

developmental/mental ages while at the same time 

ignoring that student's chronological age. 

Researchers and advocates carefully examined these 

practices. Advocates took issue with the segregated 

nature of the services and the undignified and 

devaluing ways students were treated in a 

chronologically age inappropriate manner. Researchers 

began to look at learning characteristics of students in 

artificially contrived settings and found that they did 

not generalize very well, and in fact sometimes did 

not generalize at all. These researchers began to 

question the use of instructing in artificially contrived 

environments since students were not able to apply 

the skills they were learning to their home and/or 

neighborhood environments. Another group of 

researchers began to study the effects of teaching social 

skills to students with mental retardation and found that 

they learned social skills more quickly and effectively 

in the presence of socially competent peers, i.e. nonhandicapped students of similar age. 

These two major findings, i.e. that students did not 

generalize effectively and that they were more likely to 

learn social skills in the presence of non-handicapped 

peers led to development of self-contained classes of 

students with mental retardation on regular campuses. 

This service delivery resulted in opportunities to interact with their non-handicapped peers. In addition, 

the development of a community- based instructional 

program was emerging. Community-based programs 

involve providing direct instruction to students in the 

community environment, e.g. grocery stores, 

laundromats, banks, restaurants, post offices, integrated 

work settings, and public transportation. This direct 

instruction in the community eliminated or at 

110 
least reduced the problems with generalization of 

skills to community environments. 

However, researchers were still not satisfied and 

began to determine if students learning in the school 

community environments would generalize to their 

own home neighborhood environments. These 

researchers found that once again the student's 

generalization was limited and recommended that 

instruction occur in the student's actual home 

neighborhoods. 

In addition, several of us have been looking at 

the research on friendship development and the 

implications for school placement. There is a very 

rich body of research that has systematically evaluated 

the characteristics of childrens' friendships (nonhandicapped childrens' friendships). The prerequisite 

conditions identified in almost all the research on 

friendships are that close proximity and frequent 

opportunities must be made available in order for 

children to develop friendships. Although the service 

delivery on integrated sites was to provide education, 

for administrative convenience the services have 

generally not been in the students' neighborhoods. 

The implications of teaching community skills 

outside of a student's neighborhood and integrated, but 

not in the student's neighborhood, have significantly 

influenced school districts and parents to advocate for 

and develop quality, cost-effective programs in the 

student's neighborhood school. This movement should 

not result in a reduction or elimination of needed 

specialized services and/or resources. However, it is 

necessary to use creative efforts to provide 

neighborhood school opportunities for all students 

with the needed support. Parents should not have to 

choose between specialized services and friendship 

opportunities for their children when faced with 

placement decisions. I am confident, because of the 

examples provided by several school districts 

throughout the country that we can develop the needed 

services at the neighborhood school without 

necessarily requiring additional financial resources. 

Specifically, I would like to recommend that 

the President's Committee on Mental Retardation 

influence schools at the national, State, regional, and 

local levels to: 

1. Develop and create opportunities for students to 

attend their neighborhood schools; 

2. Provide frequent and sustained opportunities to be 

educated with their non-handicapped peers; 

3. Provide specialized services as needed by a student 

in order to be the best that he/she can be; and 

4. Provide direct and frequent opportunities to 

acquire the skills necessary to participate in 

integrated living, recreation, and working 

activities within their own neighborhood. 

Thank you. 

111 
Future Planning in Education: 

Critical Issues in Transition 

by William E. Kiernan, Ph.D. 

Director: Training and Research 

Institute for Adults and Disabilities 

The Children's Hospital 

Boston, Massachusetts 

INTRODUCTION 

During the past 5 years, a significant 

amount of energy has been invested in looking at the 

transition from school to work. The focus upon 

movement from school to integrated employment 

without support, with time limited support, or with 

ongoing support has been the benchmark of much of 

the transition activities to date. It is important, 

however, to look at transition not only as a process 

from school to a job but also to look at the elements 

that make up a job and provide satisfaction for the 

worker on the job. Beyond the specific tasks 

performed we must look at the level of integration 

realized (the interactions with co-workers) and the 

identity that work provides for the individual. The 

process of transition, the movement from one 

environment or situation to the next, is not a 

reflection of the efforts of the educational system 

during the last years of the student's participation in that 

system but, rather, should reflect a systemic 

commitment by the school toward the preparation of 

the student with special needs throughout his or her 

educational career for entry in the adult world. This 

includes developing opportunities for the student to 

maximize his or her independence and productivity 

through real work by the utilization of a functional 

curriculum and realistic career experiences. 

It is estimated that 300,000 students with special 

needs leave school each year. The vast majority are 

either underemployed or go into unemployment. 

From 50-75% of all individuals with disabilities have 

been reported by the U.S. Commission on Civil 

Rights to be unemployed. A more detailed study of 

a random selection of 1,000 persons with disabilities 

was conducted by Lou Harris in conjunction with the 

International Center for the Disabled. This survey 

showed that of the 1,000 persons with disabilities 

randomly selected, 2/3 were unemployed. When 

asked if given the opportunity to work would they 

accept employment, 2/3 indicated that they would 

be willing to enter the labor force. Typically, 

persons with disabilities are not counted in the 

unemployment statistics because they are not 

considered as employable and thus not in the labor 

force. 

Action at the Federal level, including, the 

establishment of supported employment activities as 

an initiative through the Department of Educations, 

Office of Special Education and Rehabilitative 

Services (OSERS) in conjunction with the 

Department of Health & Human Services, Human 

Development Service's Administration on 

Developmental Disabilities (ADD), has clearly 

shown that persons with severe disabilities can be 

employed given sufficient training and support. 

The developmental disabilities legislation has 

established employment as a priority in the 

development of all statewide plans for persons with 

developmental disabilities. The Department of 

Education's Rehabilitation Services Administration, 

through the amendments of the Rehabilitation Act, 

has established supported employment as an 

acceptable vocational outcome (Title 6 Part C of the 

Vocational Rehabilitation Amendments). These 

Federal movements, though focusing upon 

supported employment, demonstrate that persons 

who have been considered unemployable in the 

past, clearly have potential given adequate training 

and opportunities for ongoing support. 

112 
In the educational process, several States have 

initiated, either legislatively or administratively, 

transition planning processes. An analysis of over 

1,000 initial plans in Massachusetts has shown that 

the vast majority of persons moving from school to 

work are scheduled to enter sheltered employment. 

A total of 60% of the persons who will be 

completing their special needs courses in the public 

schools will be designated as having the Department 

of Mental Retardation as a lead agency. Of this 

group, 80% have a long-term goal of sheltered 

employment. 

These statistics show that there is a gap in 

information between educational and adult services. 

Initially, a major thrust to establish supported 

employment was made at the Federal level; 

however, many States now have extensive supported 

employment initiatives. Yet, given that supported 

employment is somewhat established in individual 

States, the majority of those students with special 

needs completing their educational program are 

slated to enter sheltered employment. It might be 

assumed that there is either a lack of knowledge 

regarding the employment options available by 

professionals in schools, or that the educational 

system is recommending the services that are 

currently being offered and immediately available 

rather than those which may be considered as more 

appropriate but not as readily available. In the latter 

scenario, students would be referred to an existing 

service; i.e., sheltered workshop, work activity 

centers or day habilitation programs though, in fact, 

the educator may feel that the student has more 

capacity or greater potential than this type of 

option. However, given the need to secure a service 

upon graduation, they may opt for an existing 

resource rather than the optimal resource. 

This problem may reflect a lack of knowledge, 

as was noted above, among the educators in the 

area of transition from school to work. However, 

it may also reflect the limited experiences that some 

educators have had with industry settings particularly 

those where special needs students may be placed. 

Unrealistic expectations regarding the capacity or 

limitation that the student may possess may inhibit 

the teacher from encouraging the family or student 

to strive for greater goals or take risks in seeking 

out employment. It is important that not only adult 

services but educators as well, shift their focus from 

a selling focus, that is preparing an individual with 

skills that they feel ought to be or have been 

necessary in the past, to a marketing focus, that is 

listening to what industry is asking and preparing 

students to meet those needs. 

The above noted issues clearly reflect the need 

for additional skills among the educators if the 

movement from school to work is to be successful. 

Specifically, there needs to be additional training in 

curriculum and technology development (i.e., task 

analysis, learning and adjustment, functional 

curricula), knowledge of industrial environments 

(i.e., marketing, goodness of fit strategies, ongoing 

support resources) and enhanced planning capacities 

(i.e., communication, strategic planning, knowledge 

of support systems). 

The development of these competencies or skills 

reflect a modification in the more traditional preservice education training programs with a need to 

focus upon not only curricula development but 

industry and marketing skills as well as planning 

capacities among educators. The outcome of an 

effective pre-service curriculum for educators in the of 

transition area would include the development of 

personnel who are knowledgeable as to employment 

and industry needs, have a knowledge of the adult 

service system, are able to design and implement 

a functional curriculum, and can advocate for employment as an outcome for persons with special 

needs. 

ENHANCED PARTNERSHIPS 

The theme of the forum, Citizens with Mental 

Retardation and Community Integration, reflects a 

focus upon the movement of persons with mental 

retardation into integrated work, residential and 

social settings. This movement focuses upon 

increasing the productivity, integration and 

independence of persons with disabilities in the 

areas of employment, community living and 

recreation. In order to accomplish this, a number of 

partnerships must be developed. These partnerships 

are critical to the success of dealing with the 

whole person. It is essential that in examining 

employment opportunities for students with special 

needs, we consider also recreational and social 

needs. Other documents in this report will be 

directing their efforts in these areas. This article 

will look specifically at the recommendations for 

enhancing partnerships in the area of integrated 

employment for students with special needs. 

These partnerships will look at the 4 broad areas 

of Federal/State; State/local; public/private; and 

family service delivery. 

Federal/State Partnerships 

• Continue funding of service, training and research 

in transition and options for employment with 

support services for students with special needs, 

113 
 Encourage cooperative planning between the 

Department of Health and Human Services and the 

Department of Education to encourage coordination 

of resources and planning strategies at Federal and 

State levels. 

 Support for services, not just from school to work but 

school to adult life including residential and 

recreational. 

State/Local Partnerships 

 Define the role for transition specialist in schools; 

examine certification requirements and have all 

special education pre-service programs provide 

adult services and transition curricula materials for 

students (reinstitute a focus on career education and 

life-long learning), 

 Incorporate other learning environments for students 

who have left school, i.e., community colleges, adult 

education and vocational education as mechanisms to 

support the integration of the student in the work and 

social areas, 

 Require that the IEP (individual education 

plan) have a focus upon employment not 

just in the last years but throughout secondary education at a minimum and preferably 

throughout the entire educational process, 

 Encourage the development of functional curricula in 

school programs including hands-on work experience 

programs for students in middle school and 

integrated employment programs for students in 

high school. 

Public/Private Partnerships 

 Become knowledgeable, about employer needs 

and devise a curriculum which helps students 

respond to those needs, 

 Use actual integrated work environments as part of 

the educational experience for students with 

special needs, 

 Involve adult service agencies in the individual 

education planning process (Vocational 

Rehabilitation, Mental Retardation/Developmental 

Disabilities, Employment and Training Services...), 

 Be flexible with the use of staff support on site 

(not all jobs occur Monday through Friday, 9-5). 

Family/Service Delivery 

 Make sure that vocational and/or employment 

recommendations are part of the individual 

education plan, not just in the final year of high 

school but throughout high school at a minimum, 

 Develop expectations for the child with a disability 

that will increase the level of independence and 

productivity both at home and in school, 

 Expect that a transition plan will be developed and 

that the roles of various agencies will be defined, 

 Encourage an awareness about the world of work, 

 Request work experience both within and outside 

school as part of the standard curriculum. 

CONCLUSIONS 

The area of transition is a fast moving and 

evolving area which includes the working together of 

those in the educational system as well as those in 

the adult service field. Likewise, it is essential that 

families and persons with special needs become 

active participants in the transition from school to 

work. It is important that all have an expectation that 

work is a viable outcome for the student with special 

needs and that the goal of the educational process is to 

lead toward increased independence, productivity and 

integration in real work settings. All individuals in the 

partnership for enhancing the transition from school 

to work must be willing to give as well as to receive 

if the partnership is to be effective. The transition is not 

just from school to work but from school to adult life. It 

is this broader transition that the educational system 

must respond to if we are to maximize the abilities of 

the student with special needs. 

114 
Integration of Children with Mental Retardation 

into Public Schools 

by Muriel W. O'Tuel, Ph.D. 

Assistant to the Superintendent 

Horry County School District 

Conway, South Carolina 

The first school for persons with retardation 

was established in 1896 — 200 years after schools 

were established in our country. At one time people 

thought nothing could be done for persons with 

retardation — that the genes were set forever. 

Also there was much reluctance on part of the 

parents to acknowledge their child had mental 

retardation (MR). Some stigma still exists, but, we 

have come a long way. Most parents aren't 

prepared to rear normal children not to mention 

children handicapped by mental retardation. In the 

old medieval days kids with mental retardation 

served as court jesters and clowns. Even the great 

Protestant reformer, Martin Luther, believed that 

mentally retarded children had no souls. In a feature 

article (News & Courier, Charleston, SC, 1-31-

88), parents of a 16-month old child with 

retardation said, "Retarded children are just like 

any other children, they just don't learn as fast. 

Given the opportunity and some love, these kids 

can grow up, support themselves and contribute 

to society." Being accepted by society and being 

given a fair chance are what parents want most for 

these children. 

In thinking of my topic today, Integration of 

Citizens with Mental Retardation in the Public 

Schools, the only objectives we need are: that 

students with mental retardation learn to support 

themselves, to contribute to society, and to be 

accepted by others. Although we have made 

strides in educating people with disabilities since the 

passage of PL94-142, we still have a long way to 

go. We have not, in my opinion, conquered 

education for people with handicaps. 

The best way to truly integrate persons with 

mental retardation into society is to integrate them 

as fully as possible in the public schools. Our 

schools are miniature societies. With the total 

school population learning, living, loving, and 

laughing together, more acceptance and 

understanding of the students with mental 

retardation in the workplace will naturally happen 

when these students become adults. So many today 

still feel anxious or uncomfortable around 

citizens with mental retardation because they look 

different or have extreme difficulty 

communicating and many haven't learned to deal 

with this. You heard Arlene Kanter say yesterday 

that adults with mental retardation are less 

dangerous, and less threatening to the 

neighborhood than most other citizens. 

Awareness is crucial Part of my responsibility as a 

school administrator is to improve communityschool relations, school board relations, school 

morale and image building. I must get out in the 

schools and in the communities. Many central 

office school administrators/school board 

members seldom visit the classroom. We must get 

out and visit with our handicapped students in 

their learning environment. We must talk with the 

students, teachers, and parents. We must be educated about the nature and the needs of our 

handicapped students. This education (awareness 

training) must include the principals and teachers of 

non-handicapped students. In my district when 

one or two of the board members get behind an 

issue, things happen. Because of the persistence 

of one board member, our district, in less than 

one year's time, has produced a comprehensive 

AIDS curriculum which is the first in our State. 

With constant awareness before the public, 

support for citizens with mental retardation can be 

a reality. At most school board meetings in my 

school district, a parent or other advocate for the 

children with disabilities, speaks out during 

115 
the public forum for improvements in special 

education services. This public awareness impacts 

favorably on programming for children with disabilities 

in our schools. 

In the past we have seen days of readily 

available public funding for our special education 

programs, but; we are now seeing days when Federal 

resources are drying up and State resources are 

stabilizing at what seems to be unrealistic service 

levels. Public awareness and support are crucial for 

funding. 

I come to you from Horry County, South 

Carolina. Some of you may know us better as "The 

Grand Strand", one of the richest resort and 

retirement centers in the nation. Though our county's 

population is expected to triple in the coming twenty 

years, we find that we have three retired people for 

every child with a handicap in our school system...and 

we expect that ratio to increase tremendously in the 

future in favor of those taxpayers who are living out 

their "Golden Years" among us. In the area of 

education in general, not to mention the need to 

have funding for programs for handicapped children 

in particular, we live in an area which is already 

experiencing the "graying" rather than the "greening" of 

America. Population projections tell me that many of 

us will be facing similar situations in the future. One 

of the ways we are dealing with this problem is 

getting these senior citizens involved as volunteers with 

our special education students. By forming close 

alliances with our handicapped students these senior 

citizens will be more likely to support funding for 

our programs — vote yes for our school budget and 

bond referendums. This goes back to the awareness 

concept mentioned earlier. 

We are also looking at ways to expand our adult 

development programs. Because of the tourismorientation of our area we probably have more 

restaurants per capita than any other county in our State. 

We also have more than 50 golf courses. Involving 

adults with mental retardation in the operation of 

restaurants and golf course maintenance is something 

we must get serious about. 

Not all of our problems can be cured overnight, 

but; there are some low-cost/no-cost ways that we 

educators can explore that will improve the system 

to persons with mental retardation: 

1. We can arrange for dual memberships in PTAs 

and ARCs so that parents of our students can 

become involved in looking toward the future. 

2.We can work with our administrators to see if we 

can learn to collaborate with local. 

mental retardation service agencies and other 

community agencies in the submission of certain 

types of budgets so that our constituents can 

become accustomed to the idea that we work 

together. We have formed inter-agency councils 

to deal with this. 

3. We can test the waters to see if it's possible to get 

our local governing boards and our State and Federal 

legislatures to work to relieve the vacuums they 

often inflict upon all of us when narrowly defined 

programs are funded through individual 

bureaucracies to isolated local programs. Let's ask 

them for more incentives for us to work together 

in developing programs, seeking funding, and 

sharing credit ... and blame! 

In conclusion, what I am really here to do is issue 

a strong call to educators to become involved in the 

needs of all related community service programs 

There is no such thing as an isolated concept of 

"Special Education" which begins when a child 

stands on our doorstep at the age of 5 and ends when 

we present him a certificate at the age of 21! We've 

got to remove the artificial barriers that keep us from 

knowing what else in this area is going on around us, 

and we've got to get our parents involved in time to 

help these adult service agencies improve their longrange predictions of need and planning. 

If educators need a selfish motive for changing the 

way we view these "other agencies", then I offer one: 

It's pretty simple, really. Across this nation, educators 

are asking to be judged ... and rewarded ... on the 

basis of our successes in the classrooms. It comes as no 

startling truth ... though it is generally more true in the 

area of special education than it might otherwise be 

... that we cannot be favorably judged on how well 

we've prepared a child with mental retardation for 

adulthood unless and until there are adequate, 

challenging support services in the continuum. Special 

education no longer has the connotation that our job is 

done when we let an adult with mental retardation out 

of our system once he/she chronologically reaches the 

age of 21. 

But we've got to do more than look ahead and 

reach up. There will be times when we must reach 

down to the pre-schoolers and work hand-in-glove with 

other agencies to be sure that early intervention and 

adequate diagnosis are accomplished as soon as 

evidence of a child's developmental delays become 

noticeable. There will also be times when we must 

reach out to find suitable summer services and respite 

for parents who need vacations from their family 

circumstances much more often and yet are least 

likely to get them. 

116 
This, then, is the role I see for educators. Think of 

us as the gentleman who has the second dance on the 

parent's Dance Card. Usually parents come to the dance 

with another escort — the human service agency that 

has helped them identify their children's problems and 

provided some type of pre-school help. 

We in the schools have the Second Dance. We 

must introduce ourselves and "break the ice", politely 

offer all the help and support we can muster, and then, 

some 18 years later, we turn both the parents and our 

students over to those agencies which offer services 

for adults with disabilities — work activity centers, 

sheltered workshops, group community living 

arrangements. If we in education do our job right, as 

the traditional role, as the family's Second Dance 

Partner, we will, when the dance is over, usher them 

smoothly along to new partners who will already be 

their old and trusted friends. 

The Law of the 85th Monkey also applies to us 

in education. This story comes from a wonderful 

book by Marilyn Ferguson called The Aquarian 

Conspiracy. There was this tribe of monkeys that 

lived close to the shore and ate oysters. The oysters 

carried a micro-organism that made the monkeys 

sicken and die. One day, almost by accident, a monkey 

picked up an oyster and washed it off in the surf 

before she ate it. She didn't get sick. Several other 

monkeys began washing their oysters. By the time 

the 100th monkey washed his oyster, all the 

monkeys from that point on did it and they were 

henceforth saved from the deadly microorganism. 

Now, it is not given to each of us to be the 100th 

monkey. We may be the 85th monkey, and 

important to a pattern that we don't know about and 

can't see. But the efforts of each of us are important, 

in ways we can't imagine. We educators can make a 

difference; we have the power and the capacity. We 

can provide an integrated society where our citizens with mental retardation can live, learn, work, 

and play successfully. We must make it a priority. 

117 
Recreation/Leisure/Socialization Panel

MODERATOR: STUART J. SCHLEIEN, PH. D. 

PANELISTS: SIRKKU "SKY" HILTUNEN, ED. D. 

JOHN W. CHROMY 

K. J. MOORE 

118 
Community Leisure Services and 

Persons with Mental Retardation 

by Stuart J. Schleien, Ph. D. 

Associate Professor 

School of Physical Education and Recreation 

University of Minnesota 

Minneapolis, Minnesota 

A historical look at the kinds of recreation 

programs that have generally been made available to 

children and adults with mental retardation reveals a 

substantial gap between the services needed and those 

available. The recreation programs offered for schoolage children, for example, have focused on a small 

set of activities so predominant in this area that they 

have become stereotyped. These include bowling, 

swimming, arts-and-crafts, and field-trips. Summer 

programs offer a similarly restricted range of options. 

Most typically, children and youth with mental 

retardation may attend a handicapped-only camp 

(which itself is labeled with a "handicappism" such as 

"Camp Hope") for 1-2 weeks during summer 

vacation. 

Finally, even those recreation events which 

might be available in community settings require that 

persons with disabilities be segregated from those who 

are not disabled or, when interactions with 

nonhandicapped persons do occur, that they participate 

in integration experiences characterized by strictly 

hierarchical role relationships. In these relationships, 

the nonhandicapped person is the helper and the 

individual with disabilities receives the help. 

Special events such as "Special Kids Day" at the 

county fair, and the annual handicapped- only Christmas 

party hosted by local service organizations all fall into 

this category. While such programs are not necessarily 

detrimental, and often benefit those they serve (there 

are many, for example, who continue to support 

segregated programs at a time when integration has 

otherwise become a widely accepted value which 

should be reflected in activities and services), their 

continued dominance does create difficulties. 

Just as community integration involves 

mastering certain skills and activities in the 

vocational and domestic liying domains, the 

ability to deal constructively with leisure time has 

been considered an important predictor of 

successful community adjustment. There is evidence 

that difficulties in dealing positively with free time 

— such as a coffee break at work or evenings in a 

group home — will impede the success of a 

community placement even when the individual 

has otherwise mastered specific job and domestic 

living skills. Thus, various authors have 

emphasized the importance of providing systematic 

instruction to address leisure education needs, and 

argued that the learning characteristics of persons 

with mental retardation require that this instruction 

focus directly on criterion activities and situations as 

they actually occur in community environments. 

STATUS OF COMMUNITY LEISURE SERVICES 

In 1977, the National Recreation and Park 

Association (NRPA) adopted a position statement 

calling for the application of the principle of the least 

restrictive environment (LRE) to the design and 

delivery of recreation and leisure programs for 

persons with developmental disabilities. The 

challenge of providing integrated services in this 

area is not unlike that confronting educational 

agencies whose existing service delivery pattern 

involves the segregation of children with handicaps 

from their peers into separate schools and classes. 

However, while clear mandates for services and 

trained professional staff have facilitated the development 

of integrated public school educational programs in 

many parts of the country, these and other critical 

stimulants to similarly integrated programs in recreation 

are either inadequate or nonexistent. 

An examination of the existing service delivery systems in community recreation reveals 

119 
a variety of agencies that provide leisure and 

recreation services to persons with and without 

disabilities. Schleien and Werder (1985) categorized 

these into three major groupings: 1) tax-supported 

municipal or county park and recreation agencies 

which serve as neighborhood centers providing a 

variety of recreation and leisure services, 2) 

community education agencies, also tax-supported, 

which are generally school-centered (e.g., in a 

community college) and provide a range of 

recreational, continuing education, cultural, and 

social services to all segments of a community in response to presumed needs; and 3) educational and 

other service delivery systems (such as community 

mental health and mental retardation boards, state 

hospitals, and other specialized programs) funded solely 

or primarily to serve persons with handicapping 

conditions. In addition to these "public" programs and 

services, advocacy groups and community service 

organizations frequently sponsor nonschool activities 

for children and youth with disabilities. These include 

programs supported voluntarily by parent groups (e.g., 

a summer camp or respite service supported by the 

local Association for Retarded Citizens or Society for 

Autistic Citizens chapter). Several studies have 

been conducted to survey such community agencies 

and assess their respective roles and both actual and 

perceived responsibilities to provide services to 

children and youth with disabilities. Schleien, Porter, 

and Wehman (1979) surveyed both generic 

community agencies and those funded by the 

developmental disabilities unit in Virginia, and found 

that 69% of the agencies offered some form of 

recreation services to persons with developmental 

disabilities. Austin, Peterson, Peccarelli, Binkley, and 

Laker (1977) surveyed a number of agencies, 

including municipal park and recreation departments 

and health care and correctional facilities throughout 

Indiana, regarding the therapeutic recreation services they 

were providing. Eighty percent of the 50 responding 

park and recreation departments stated that their 

agencies should be serving special populations, and 

76% did offer such services, although only 5% of the 

programs were supervised by a therapeutic 

recreation specialist. Austin et al. (1977) concluded 

that existing programs were insufficient, and that a 

majority of municipal park and recreation departments 

were not providing adequate services. 

In a statewide survey of all relevant municipal 

recreation, public school, and community education 

agencies, Schleien and Werder (1985) attempted to 

establish a baseline for future efforts in a shared 

responsibility system that delivered community 

recreation services to persons with disabilities in 

Minnesota. They reported that each agency type 

believed that one of the other agencies should be 

primarily responsible for meeting such needs. A large 

majority of park and recreation agencies believed that 

community education programs should be primarily 

responsible, and an even greater percentage of 

community education agencies maintained that park 

and recreation agencies must assume primary leadership 

in this area. Although the public schools assumed a 

minor degree of responsibility for special recreation 

services, a majority of the school respondents were 

not even aware that other recreation service 

providers were available in the community. 

Collaborative and cooperative efforts were not likely 

to occur under such circumstances. 

Schleien and Werder (1985) found a gap 

between the services needed and those provided. 

Available recreational activities apparently were based 

on the choices of instructors and the availability of 

space, equipment, and time, rather than on any 

systematic assessment of consumer needs and 

preferences. They concluded that while all three 

types of agencies were indeed providing some special 

recreation services, these were limited and typically 

did not match client service delivery needs. Community education and park and recreation agencies 

seemed to provide only a few typical recreation 

services, and schools reported some incorporation of 

recreation skill instruction into adapted physical 

education classes. Schleien and Werder highlighted 

the implications of a lack of clearly consensual and 

collaborative roles and responsibilities among the 

agencies involved. In some cases, even an awareness 

of the services which were and might be provided was 

found lacking. While the various agencies generally 

agreed that they were responsible both individually and as 

a group, redundant services were common. Such 

duplication of effort by multiple agencies did not 

appear to reflect any deliberate transagency plan to 

emphasize certain types of programs. The agencies 

involved were unaware of similar or identical 

programs elsewhere. 

GUIDELINES AND RECOMMENDATIONS 

FOR PLANNING COMMUNITY 

LEISURE SERVICES 

The acquisition of functional (i.e., skills which 

are naturally occurring, frequently demanded and have 

a specific purpose), age appropriate (i.e., activities 

typically performed by persons in a particular age group), 

leisure skills referenced against nondisabled peer 

performance criteria presents a powerful tool to 

integrate persons with mental retardation into normal120 
ized community environments. The selection of 

leisure skills should reflect this potential benefit, in 

that only those skills or activities which have the 

potential of being performed in the presence of, or 

in interaction with nondisabled peers should be 

selected for instruction. Anything short of this goal 

will do little to mitigate the (unnecessary) 

longitudinally arranged segregation of persons with 

developmental disabilities, and could result in the 

acquisition of leisure skills that meet the 

substandard performance demands of protective 

segregated settings (Schleien & Ray, 1988). 

Based on survey results and careful analysis of 

the various obstacles that inhibit leisure skills 

development and community access, several 

recommendations for program planning efforts 

include: 1) distinct networks of communication 

across agencies must be established to reduce 

duplication of effort and to complement 

resources, 2) the range of activity offerings must 

be expanded, 3) integrated community recreation 

programs should be encouraged and established, 4) 

the number of specially trained personnel should be 

increased and supported across agencies, and 5) in 

general, access and availability of special recreation 

programs must be improved. If such lofty goals 

are to become reality, transagency planning and 

cooperative sharing of programming responsibility 

in the provision of these services are critical. 

In order to succeed in promoting maximum 

integration in community leisure environments, an 

interdisciplinary approach in the design, delivery, 

and evaluation of these services is necessary. 

Consumers with disabilities, families/ careproviders, 

public and private leisure service agencies, and state 

and federal governments must develop partnerships 

to instigate changes in the various service delivery 

systems. 

Consumers. These efforts must begin at 

the individual citizen or consumer level. Greater 

self-advocacy efforts must transpire to encourage expansion of leisure services and activity 

offerings. Community leisure service agencies 

must offer programs that are based on the preferences and needs of persons with disabilities, 

moving beyond stereotyped activities of 

bowling, swimming, arts-n-crafts, and field-trips, 

programs typically offered to persons with 

disabilities. Citizens inadequately served in integrated community environments, and their 

careproviders, must communicate their desires 

and insist on a broader range and more normalizing types of activities such as integrated 

camping, nature, music, skiing, and cultural arts. 

Families. Since we already know that a 

successful community residential placement in itself 

does not guarantee a normalized leisure lifestyle 

(Birenbaum & Re, 1979; Schleien & Meyer, 

1988) and that families often shoulder the major 

responsibility for providing recreation activities 

and opportunities (Chesseldine & Jeffree, 1981; 

Wehman & Schleien, 1981), careproviders must 

also collaborate with the various service delivery 

systems Families could demand leisure/recreation 

related goals and objectives in their children's 

individual education plans during planning 

meetings in school, and could play more active 

roles in the delivery of community leisure 

programs. Examples of these efforts include parents 

or siblings serving as volunteer advocates or coaches 

as co-participants in an activity, and families playing 

active roles in the advancement of their children in organized recreation as are currently performed in 

scouting programs. 

Public-Private Partnership. In order to 

optimally meet the needs of persons with disabilities, the responsibility for improving and 

expanding recreation services should rest with 

professionals, educators, and families in public and 

private recreation agencies, community education, 

and school environments. If responsibilities are 

spread too widely among agencies, however, it is 

possible that (a) no one organization will 

guarantee they are carried out, or (b) lack of 

communication could lead to redundancy or gaps in 

services. In contrast, a lead agency designated to 

assume overall programming responsibility could 

function to insure that comprehensive recreation 

services were provided in an efficient and effective 

manner. This responsibility could be assumed on 

the basis. of the chronological ages of the 

participants served or on the basis of resources 

available in the community. For example, the 

responsibility for training young people in leisure 

skills could be assumed by public schools and by 

specific community recreation agencies (e.g., public 

recreation and park departments, private health 

clubs, community education agencies) for adults. Or 

responsibility could fall with the agency best 

equipped in terms of facilities, staff and funds to 

provide special leisure services. However, the 

success of dividing responsibilities depends upon 

the quality of communication among the agencies. 

If, for any of a variety of reasons, public and private 

agencies fail to share the responsibility for providing 

quality leisure and recreation services for individuals 

with disabilities, one agency should assume 

leadership. It is logical that public park and recreation 

agencies assume responsibility for delivering leisure 

services. Since it is the public recreation and park 

department's responsibility to meet the 

121 
needs of all citizens within the political jurisdiction, it 

is prudent that this agency group assume a primary 

leadership role in the trans- agency model of special 

recreation service delivery. As a leader, park and 

recreation agencies can bridge the gap between 

public schools, which provide prerequisite recreation 

skill instruction, and community education and private 

leisure service delivery systems which provide 

opportunities to generalize leisure skills in actual 

community situations. In this vital role, park and 

recreation departments can provide the practice and 

experience for individuals with disabilities to 

develop preferences and refine recreational skills. 

Transagency models and shared responsibility for 

recreation programs are natural theoretical approaches 

to therapeutic recreation. That such models are 

uncommon in practice is not surprising, given the 

complex communication and shared resource networks 

necessary. 

Federal-State-Local Partnerships. From a 

broader perspective, federal, state, and local 

governments have important roles to play in the 

delivery of community leisure services. Agencies 

within federal (e.g., Office of Special Education and 

Rehabilitative Services) and state (e.g., State 

Developmental Disabilities Council) governments 

must continue to be concerned with the availability 

and training of program staff to design and deliver 

special recreation programs. In the Schleien and 

Werder (1985) study, almost nine of every 10 

recreation agencies did not employ a full-time 

professional. Like other surveys in the past, a scarcity of 

program leaders with training in therapeutic recreation, 

adapted physical education, or special education was 

found in community leisure environments. The lack of 

such levels of training was indicated to be a primary 

barrier to offering special and integrated recreation 

programs. However, research is currently underway to 

investigate the amount and type of trained leadership 

necessary to successfully integrate persons with 

developmental disabilities. Initial findings reveal high 

levels of appropriate play on the part of the 

participants with disabilities and increased positive 

nonhandicapped peer attitudes toward persons with 

disabilities, with only minimal added expense to the 

agency. 

Also, other federal agencies such as the Rehabilitation Services Administration must frown upon the 

proliferation of separate, handicapped- only after-school 

recreation programs, special camps, and segregated 

social clubs and alter their priorities to support the 

development of integrated recreation programs. Local 

education agencies should be encouraged to hire 

professionally certified Therapeutic Recreation 

Specialists (i.e., C.T.R.S.) to consult with classroom 

teachers and physical educators in the schools. Only in 

this manner will leisure education become a viable 

component of the daily school and after-school 

curricula for children with and without disabilities. 

SUMMARY 

The importance of communication and collaboration across individuals and agencies has become 

apparent and must be addressed if integrated, accessible 

community leisure services are to become a reality. 

While the onus of responsibility for accessible 

services seems to fall on the public park and recreation 

agency and staff, the therapeutic recreation specialist, 

care- providers, consumers, and other key players 

must assume active roles in this process. These 

individuals have unique perspectives in that they 

understand the importance of leisure in the quality of life 

for everyone, including persons with developmental 

disabilities. Integration and the development of 

accessible community leisure services must be 

approached carefully and systematically if all citizens, 

with and without disabilities, are to receive successful 

community leisure experiences and realize a decent 

quality of life. 

REFERENCES 

Austin, D., Peterson, J., Peccarelli, L, Binkley, A., & 

Lacker, M. (1977). Therapeutic recreation in 

Indiana: Health through recreation. 

Bloomington, IN: Department 

of Recreation and Park Administration, Indiana 

University. 

Birenbaum, A., & Re, M. (1979). Resettling mentally 

retarded adults in the community — almost four 

years later. American Journal of Mental 

Deficiency, 83, 323-329. 

Chesseldine, S., & Jeffree, D. (1981). Mentally 

handicapped adolescents: Their use of leisure. 

Journal of Mental Deficiency Research, 25, 

49-59. 

Schleien, S., & Meyer, L. (1988). Community- based 

recreation programs for persons with severe 

developmental disabilities. In M. Powers (Ed.), 

Expanding systems of service delivery for 

persons with developmental disabilities 

(pp. 93-112). Baltimore: Paul H. Brookes. 

Schleien, S., Porter, R., & Wehman, P. (1979). An 

assessment of the leisure skill needs of 

developmentally disabled individuals. Therapeutic 

Recreation Journal, 17, 16-21. 

Schleien, S., & Ray, M. (1988). Community recreation and persons with disabilities: Strategies for integration. Baltimore: Paul H. 

Brookes. 

122 
Schleien, S., & Werder, J. (1985). Perceived responsibilities of special recreation services in 

Minnesota. Therapeutic Recreation Journal, 

19(3), 51-62. 

Wehman, P., & Schleien, S. (1981). Leisure 

programs for handicapped persons- Adaptations, techniques and curriculum. Austin, 

TX: PRO-ED. 

123
Future Goals of Special Olympics 

by John W. Chromy 

Director, U.S. Chapter Operations 

Special Olympics International 

Washington, D.C. 

BACKGROUND 

The future of Special Olympics is being determined by the achievements of one million 

athletes with mental retardation currently in the 

program. These athletes, though aged eight through 

eighty, are very young in spirit, enthusiasm and they 

delight in the joy of achievement. 

Special Olympics set out to give people with 

mental retardation a chance to participate in sports 

and to expose people of communities, in a positive 

way to the achievements of Special Olympians. 

The response of the athletes to this opportunity 

has been overwhelmingly positive. The response of 

the two-million plus citizens who have volunteered 

to put on Special Olympics Games has also been 

enormously positive. But in recent years Special 

Olympics athletes have pushed the boundaries of 

our program even further. 

 Hundreds of them compete in community 5K 

and 10K runs, and some compete successfully 

in the Boston Marathon. 

 All across America Special Olympics athletes have 

been invited to exhibition competitions in high 

school and college track meets. 

 Recently Special Olympics athletes, competing as 

members of Baton Rouge Weight Lifting Club, 

won five medals in a Southeast Regional 

National Strength and Conditioning Association 

competition. 

 Thousands of Special Olympians compete in 

community bowling leagues. 

 In 65 high schools across America, Special 

Olympics athletes are accepted into the Athletic 

Letter Club and receive letter jackets for 

their participation in that, school’s Special 

Olympics team. 

The story goes on. We are finding that people 

with mental retardation, if given a chance to train 

and compete not only can achieve in Special 

Olympics sports but are now carving a niche for 

themselves in community sports organizations. And, 

wherever our Special Olympians actually are given 

the chance to compete, those who witness their 

courage, determination and joy, respond positively 

to the Special Olympians' participation. So truly the 

achievements of the Special Olympics athletes are 

pointing the way for Special Olympics' future. 

Special Olympics plans to continue to provide 

people with mental retardation a place to train, train 

and train in sports so they develop the confidence, 

courage and skills needed to play a sport with 

dignity and pride. 

Special Olympics will continue to organize yearround competitions in 14 Olympic sports so those 

that have trained will always have the opportunity to 

share in the thrill of competition. These 

competitions will be organized by age, sex and 

skill level so that each competitor will have a 

reasonable opportunity to share in the victory. In 

organizing training and competitions, Special 

Olympics will continue, as it has in the past to 

include non-retarded people in a variety of roles 

which foster mutual understanding, learning and 

respect for Special Olympians. 

Special Olympics as it now exists fosters integration and normalization in 22 different ways. 

But there's more to come. 

 A heavy emphasis is being placed on arranging 

peer coaching particularly in the junior and 

senior high school programs. 

124 
 A number of National service clubs have been 

approached for their assistance in organizing more 

Special Olympics participation in sports events 

organized in the community 

 Special Olympics is currently experimenting in six 

sports with teams composed of both athletes with 

mental retardation and athletes without any handicap. 

So the direction of the future of Special 

Olympics is clear. Provide people with mental 

retardation with the proper training in competitive 

sports, lots of opportunity to compete within Special 

Olympics, lots of exposure to people without mental 

retardation within Special 

Olympics programs and lots of encouragement to 

enter into community sports if Special Olympians so 

choose. The latter is most important. The choice must 

be theirs for having choice is the ultimate in 

normalization. 

125
Providing Art and Drama Therapy Services to 

Persons with Mental Retardation and Developmental 

Disabilities 

by Dr. S. Sky Hiltunen 

The Art and Drama Therapy Institute, Inc. (ADTI) 

Washington, D.C. 

The Art and Drama Therapy Institute, Inc. 

(ADTI) was founded in 1985. It is a non-profit 

organization which offers art and drama therapy 

services to adults with mental retardation and 

developmental disabilities in the Washington, 

D.C. area. Fifty to sixty adults are served by 

ADTI. They meet in groups of 5-12 approximately 

two hours weekly. The current program is funded 

by the Washington, D.C., Department of Human 

Services, and Mental Retardation/Developmental 

Disabilities Administration (MRJDDA). The level 

of clients served ranges from mildly to profoundly 

mentally retarded. The range of disabilities is as 

follows: visual, hearing and speech impairments, 

emotional and psychiatric problems and physical 

handicaps. 

ADTI was founded to meet the growing needs 

of the deinstitutionalized clients. Their transition 

from institution into community has presented 

new demands and expectations, especially on their 

social skills. ADTI's art and drama therapy 

program offers a variety of means and media to 

enhance the participant's socialization skills: peer 

interaction is encouraged through drama, 

movement, mime, masked mime, group 

improvisations and initiation of group discussions. 

The modeling as well as role playing of 

appropriate social responses and behaviors is a 

part of the therapeutic intervention. 

Deinstitutionalization efforts locally and nationwide state normalization as one of its major 

objectives. Sometimes institutional settings have 

been found to be restrictive, impacting the 

development of residents' ability to respond 

appropriately to a variety of social cues in their 

environment. For effective community integration, 

maximum social skills are a fundamental 

prerequisite. Therapy Theatre Company (TTC), 

which is a side project of ADTI's art and drama 

therapy program, provides training through 

process theatre and opportunities for community 

integration through public performances. TTC has 

performed since September 1986 a total of six 

times for a variety of audiences. One of the 

general goals of TTC is to strengthen rapport 

between communities and the deinstitutionalized 

residents with mental retardation. Whereas some 

of the primary goals of the performances are to 

inform, educate, and change the perception of the 

audience more positive toward persons with 

mental retardation. Actors wearing masks and 

Japanese style costumes on stage project a 

positively enchanting image of themselves. With 

this new image, the perception of the audience on 

mental retardation will hopefully change and the 

audience will learn to appreciate the unique talents 

of the Therapy Theatre Company's ensemble. 

The art and drama therapy program is open to 

all clients who are served by the Mental Retardation and Developmental Disabilities Administration. Initially, a referral can be made by case 

managers, social workers, psychologists, psychiatrists, parents or other therapists. The primary 

art and drama therapist will screen and assess each 

referred client and then make recommendations 

and referrals for appropriate groups. 

Some of the general objectives of the art and 

drama therapy intervention are as follows: 

• to enhance fine motor coordination through 

drawing, painting, mask making, mixed media 

sculpture, manipulation of an improvisation with 

instruments; 

126 
 to enhance gross motor coordination through 

movement, mime and mask pantomime 

improvisations; 

 to enhance expressive and receptive language 

skills through verbal associations on their visual art 

work, group discussions, story listening and telling; 

 to enhance communication of thoughts and ideas 

through non-verbal means of visual arts (drawing, 

painting, mixed media sculpture, mask making, 

mask collages) and drama (movement, mime and 

masked mime improvisations); 

 to enhance self-awareness, self-esteem, and selfconfidence through Therapy Theatre Company 

training and public performances; 

 to enhance the integration of thinking and emotions 

through visual arts (weaving and collage work); 

 to enhance the ability to identify, label, and express 

feelings through the process of mask and character 

selection, verbal associations on all of the created 

art work (drawings, masks, etc.) and the process of 

creating autobiographical poetry about their 

childhood, youth and adult life experiences; 

 to enhance initiative, independence, decision- making, 

and problem solving skills through Therapy Theatre 

Company training and public performance, group 

improvisations and group discussions. 

The Art and Drama Therapy Institute, through 

its cooperation with the Mental Retardation and 

Developmental Disabilities Administration, is able 

to provide its services for deinstitutionalized adults 

with mental retardation and developmental disabilities. 

As a result of this public/private partnership the 

residents with mental retardation are offered this 

unique opportunity. This program serves as an 

example of a therapeutic process in which enhanced 

socialization, communication and community 

interaction promote normalization and community 

integration of citizens with mental retardation. 

RECOMMENDATIONS 

To recognize legislatively art and drama therapy 

for individuals with mental retardation and 

developmental disabilities as viable and significant 

treatment modalities. 

To identify sources at Federal level and allocate 

funding for art and drama therapy in educational, 

rehabilitative and clinical settings. 

To identify, develop and implement private/ public 

partnership modalities for funding art and drama therapy 

services/programs for individuals with mental 

retardation and developmental disabilities in 

educational, rehabilitative and clinical setting. 

127 
Family Supports/Respite Care Panel

 MODERATOR: RACHEL D. WARREN 

PANELISTS: SHIRLEY COHEN, PH.D. 

128 
Respitality: A Unique Private Industry and 

Service Agency Project 

by Rachel D. Warren 

Director 

National Resource Center on 

Family Based Services 

The University of Iowa 

School of Social Work 

Oakdale, IA 

(former Program Consultant, United Cerebral Palsy Associations, Inc.) 

Quotes from parents: 

"We enjoyed the time off so we could be 

just two...” 

"A rare opportunity to relax, reorganize 

our lives and gain perspective we needed 

to remain good parents to a severely handicapped child" 

RESPITALITY© is an innovative communitybased family support project which has evolved over 

a nine-year period. The word RESPITALITY© 

(which has been copyrighted by United Cerebral 

Palsy Associations, Inc.) is derived from two words 

— respite and hospitality. "Respite care" has been 

defined as a period of rest and relief; "hospitality" is 

defined as the act of being friendly towards guests, 

and a change of scenery, friendly faces, and a warm 

inviting room. RESPITALITY© then combines respite 

care provided by a public or private agency with 

hospitality donated by hotels, motels, restaurants and 

entertainment businesses to offer parents of children 

with special needs a refreshing break — time away by 

themselves. 

RESPITALITY©, by its purposeful design, promotes maximum community integration. Many, many 

partnerships were forged to permit such family and 

community support — there were partnerships with 

families; partnerships with hotel/motel, restaurant and 

entertainment industries; partnerships with federal, 

state, and local governments; partnerships with 

voluntary agencies; and partnerships with media. This 

paper will briefly describe the history, evolution, 

processes, and partnerships that we required for UCPA, 

Inc., to demonstrate RESPITALITY© on a 

nationwide basis. 

First, a little history regarding the development of 

this project: 

The beginning — The year was 1978. A federal 

national significance grant was 

awarded to City University of 

New York by the Administration 

on Developmental Disabilities. 

The subcontract granted to UCPA 

permitted demonstration of urban 

and rural models of respite care. 

The town — Bangor, Maine 

The context — UCPA, Inc., consultants were 

completing site visits to pioneer 

rural models of respite in 

northeast Maine. Parents were 

calling out for a break — time 

away from their care-giving 

responsibilities to refresh and 

renew their families. In 1978, 

efforts were just beginning to 

design and evaluate respite care. 

The setting — A parent group meeting to discuss 

the feasibility of utilizing a 

summer camp as a setting for 

out-of-home respite care. 

The response — Many well-conceived and fun 

activities were detailed for the 

children — and then a Dad 

leaned back in his chair and said: 

"Wouldn't it be just great if we, as 

parents, could have that type of 

weekend getaway — have time 

together, drink a few beers, and 

just relax!" 

It was just that kind of genuine and deeply felt 

testimonial that planted the seed that grew and 

129 
resulted in designing and demonstrating a service 

that could address the need for the real, normal 

"vacation" break that many families take for granted. 

This project did evolve very successfully due 

to activities emerging across three distinct arenas — 

the respite services arena, the federal government 

arena, and the private, voluntary services arena. The 

activities in each of these arenas will be described 

briefly. First, a brief review of the respite services 

arena: 

 By the early 80s, respite services were defined 

and families began to accept, utilize, and trust 

respite services; 

 By the mid 80s, requests for using respite began to 

shift towards fun family-centered activities and 

away from crisis requests to attend to 

emergencies; 

 By the 80s, respite workers were reporting many 

other needs of families — transportation, 

counseling, equipment, loans, etc.; 

 By the early 80s, respite staff became advocates 

for a broader array of family support services; 

 By the mid 80s, original definitions of respite were 

better understood, i.e., respite was seen as one 

component of a family support service and it was 

felt respite should not be provided in isolation 

from other family support services, and finally, 

 By the mid 80s, respite services were developing in most states, though availability was 

still very limited and scattered and budget cuts 

seemed imminent. 

The second arena included the federal perspectives on respite care and the appropriations to 

support nationwide development. Beginning around 

1976 and continuing to the present time, the 

federal government awarded many grants to 

develop respite care — first to demonstrate and 

evaluate respite models, and later to design statewide 

respite systems. Requests for proposals during the last 

five years had underlying themes of volunteerism, 

private sector participation, and cost-effective, easily 

replicated projects. 

The third arena was represented by activities 

undertaken by a national, non-profit organization, 

United Cerebral Palsy Associations, Inc. For well 

over 10 years, program staff were given 

responsibility to develop respite services as a top 

national priority. That focus led to participation in 

varied grant activities, presentations during many 

meetings, consultations in numerous states, and 

documenting activities in books, manuals and articles. 

All of these activities resulted in a rapidly growing 

interest in respite care. But that interest mounted 

during a time when established services were 

competing for scarce funds, making it very difficult 

to develop a new service like respite. 

The themes which emerged in these three 

arenas provided the basis for designing 

RESPITALITY©. These themes could be summarized as follows: (1) all families have needs for fun 

and vacation-type activities; (2) services to families 

should be integrated, community-based and familycentered; (3) volunteers and neighborly support 

play a crucial role in our lives; 

(4) cost effective designs are critical; and 

(5) collaboration is essential during a time of 

limited resources. 

With these themes in mind, the concept of a 

hotel approach to respite seemed very feasible. 

Such an out-of-home respite setting would surely be 

cost-effective, humanistic, participatory, visible, and 

fun! Preliminary research into the hotel industry 

seemed to indicate a win- win partnership with 

families, private industry, service agencies, and 

communities. 

The immediate task at hand was to design a 

short- and long-range strategy to solicit buy-in from all 

these partners. The plan included six major 

strategies — Community Development, Program 

Development, Family Involvement, Hotel 

Development, Restaurant/Entertainment 

Development, and Public Relations. 

Many varied partnerships were required to 

implement these strategies. An extremely high level 

of enthusiasm was generated by orchestrating 

activities with the various partners. The pilot project 

began in August 1985, with UCP of Mobile in 

Alabama. Two major hotels — Stouffers and 

Marriott — joined in immediately. The 

overwhelming acceptance of the project by 

families, hotels, and communities led UCPA, Inc., to 

expand its efforts across the U.S. Four additional 

UCP affiliates were included in October 1986 to 

field-test the implementation plans drafted in Mobile. 

The other participating affiliates were UCP of 

Northeast Maine, UCP of Northwest Florida, 

UCP of Hudson County, New Jersey, and UCP of 

Central California. By August of 1987, the following 

results had been achieved: 

(1) Doubled the number of participating hotels to 

10 in only 6 months. 

(2) Four grants were awarded from both the 

public sector and private foundations. 

(3) Television and newspaper coverage was ongoing at all sites, with many TV and radio 

stations donating time to us to develop 

various audio-visual products. 

(4) National recognition gave credit to the 

Stouffer's Hotel general manager — the very 

first hotel partner. 

130 
(5) Restaurant and entertainment partners were on 

board at all sites. 

(6) Families were participating in every phase of 

planning, designing, implementing and 

evaluating the project. 

(7) Videotapes, brochures, and tapes were prepared 

for national distribution. 

(8) Local hotel general managers agreed to encourage adoption of the project by state 

hotel/motel associations. 

(9) Participating business leaders agreed to serve 

on local agency boards. 

(10) Hotels, entertainment and restaurant partners 

were recognized in a variety of ways, e.g., 

news stories, recognition plaques, thank-you 

letters. 

(11) Hotel managers published articles about 

RESPIRALITY© in their hotel trade magazines. 

(12) Staff of Sturgeon PR had coined the phrase 

RESPITALITY© and U.S. Congressman 

Coelho facilitated copyrighting the word for 

UCPA, Inc. 

(13) Numerous volunteers had written songs and 

prepared tapes of those songs. Still others had 

developed brochures and produced 

promotional items, and finally 

(14) Over 60 UCP affiliates had asked to join in! 

These results, then, were achieved through the 

help of many partners. A few of their contributions 

follow: 

FEDERAL GOVERNMENT 

 Initial grant in 1978 awarded to CUNY/UCPA to 

demonstrate and evaluate respite care and parent 

training models. 

 Subsequent grants made to several states to support 

respite development. 

 Legislation passed to support funding for respite 

care. 

STATE/LOCAL GOVERNMENT 

 DD funds granted to numerous local agencies for 

start-up of respite. 

 Respite care vendorized to a variety of agencies to 

provide respite while families were away for 

RESPITALITY©. 

 Project acknowledged and promoted via numerous 

government networks. 

PUBLIC/PRIVATE 

 Grants and contracts approved for both respite 

services and RESPITALITY©. 

 Both sectors participated on local advisory 

boards and task forces. 

 Hotel, restaurant, entertainment industry staff 

donated numerous in-kind services. 

 Media participated wholeheartedly via newspaper, 

television, newsletter, telethon coverage. 

 Entire communities contributed to and recognized 

needs of their neighbors. 

FAMILIES/SERVICE DELIVERY SYSTEM 

 Families expressed an outpouring of thanks 

because "It was exactly what I 

needed ..." 

 Families expressed feelings of true relief, because 

"The thought of it (RESPIRALITY©) puts me on 

Cloud 9." 

Up to now, a very successful partnership 

project has been described. Where does this leave 

us with regard to meeting needs of families? 

RESPITALITY© is just one piece in the web of 

intertwined needs of families who have a 

disabled child. We need to continue to focus on 

the needs of families and on a systems approach — 

a holistic approach to the needs of families — be it 

a need for generic community resources like 

homemaker or recreation services, be it a need for 

specialized support services like respite care or 

adaptive equipment, " or be it a need for crisis 

intervention services when stresses become 

insurmountable. These needs must be met in an 

integrated, systematic and sensitive way. 

For a number of years now, the federal government has funded, through the Children's 

Bureau, a number of National Child Welfare 

Resource Centers. One of these centers, the National 

Resource Center of Family Based Services, has a 

wealth of printed and personnel resources to 

contribute in building a family-based services 

model for meeting the needs of families with 

disabled children. A few models of family- based 

services focusing on such families have been 

documented. It would indeed seem advantageous 

to support financially a project or projects to permit 

the expansion of a generic family-based services 

model to meet needs of families with disabled 

children in a truly humane, systemic and costeffective manner. 

131 
Respite Care from an International Perspective 

by Shirley Cohen, Ph.D. 

Associate Dean 

Hunter College of The City University of New York 

Division of "Programs in Education" 

New York, New York

I was both pleased and somewhat anxious about 

the invitation to make a presentation at this 

conference about respite care from an international 

perspective. The subject of respite care is one I 

know well, having studied this topic since 1978 

when I directed a project of national significance 

on respite care funded by the Administration on 

Developmental Disabilities. What made me feel 

somewhat anxious was the part about "from an 

international perspective." My credentials here 

stem from a World Rehabilitation Fund Fellowship 

implemented in spring 1987 on the topic of "Child 

Abuse, Family Support Services, and Disability." 

But while that study took me (and Rachel Warren) 

to a conference in Greece as well as to England, 

my knowledge about respite care from an 

international perspective stems largely learned from 

what I learned about respite care in England. 

Let me back up a bit and tell you what I knew 

or thought about respite care before my fellowship 

study abroad. What I learned during the Project of 

National Significance from 1978 through 1980, and 

from the additional work that Rachel Warren and 

I did in the early to mid 80s in writing our book 

on respite care, was that respite care wasn't ready 

and waiting when the deinstitutionalization 

movement took hold, when families were told, in 

the mid 70s, that their sons or daughters were being 

sent home from institutions. In fact, lack of respite 

care was a major reason for readmissions from 

natural family homes to state institutions in the mid 

70s (Pagel & Whiffing, 1978). Nor was respite 

care available for parents who couldn't cope with 

the care needs of their young severely disabled 

children after institutions closed their doors to 

children. Families had to de-mand respite care 

and fight for it. Parents, rather than professionals, 

were the true originators of this service. In 1978 the 

Louisiana Development Disabilities Council found 

that 68 agencies serving individuals with 

developmental disabilities in that state reported 

receiving requests for respite care from families 

although only 16 offered this service. 

Professionals had, in fact, allowed a major gap 

to develop in the wake of deinstitutionalization. It 

was a gap created by good intentions — to stop, to 

remove as quickly as possible the damage caused 

by the warehousing of people. But in their 

eagerness to undo the harm of warehousing and 

support a better approach, professionals ignored the 

needs of families again, or didn't fight hard enough 

to meet these needs, leaving many families to be 

strained beyond their coping capacities, barely 

holding together or not holding together. 

By 1980 respite care had gained the recognition 

of professionals as a sorely needed service. A 

national survey of state agencies on the problems 

of children with handicapping conditions and/or 

their families resulted in respite care being 

identified as one of the two major problem areas, 

i.e., as one of the two services most needed but not 

available (Human Development Program Title 

XX Training Project, 1980). Yet it took several 

more years after that for respite care to become a 

service widely available in most states; and even 

today there are states in which families that need respite care remain largely unserved. 

Every major study of respite care conducted from the late 1970s to the mid 1980s 

found that allotments of respite care time per 

family were inadequate. Some families hoarded 

their limited supply of respite care days lest 

132 
they need them for an unexpected emergency. Other 

families reported that while the allotted time per 

family appeared adequate, in practice families could 

often not take advantage of much of this time because 

the agencies providing respite care were swamped. 

Other families reported that more generous allotments 

of respite care would have enabled them to keep 

their adolescent children at home, something they 

badly wanted to do. Families had to fight for 

recognition of respite care as a needed service, and 

then had to fight further to try to obtain time allotments 

that were meaningful in terms of individual family 

needs. And except for a limited number of very good 

programs scattered throughout the country, one might 

still characterize the general status of respite care 

service provision as niggardly in relation to those 

families with the greatest need. I am thinking, for 

example, of a family headed by a single parent who 

has two severely retarded children, both with serious 

health problems. I am thinking about another family 

made up of a single parent and her extremely-difficultto manage young autistic son. These families 

illustrate not only the need for flexible and, at times, 

extensive allotments of respite services but also 

illustrate another principle: Respite care may be 

ineffective in improving the functioning of families 

with extremely difficult child care demands, and 

may be used inappropriately in such cases, unless it is 

treated as one component of a total family support 

system. Respite care services cannot answer all family 

support needs. Homemakers, home health aides, attendants, infant and preschool programs, and after school 

day care are family support services that may more 

appropriately answer some ongoing relief needs than 

would respite care services. 

RESPITE CARE IN BRITAIN 

If we look at the development of respite care 

services, we get a different picture in Britain than in 

the United States. Behind this difference is the 

concept of "shared care," a concept accepted as a 

premise in Britain but accepted only in regard to 

families that are considered deficient in the United 

States. Shared care is an intermediate state between 

the government assuming responsibility for the 

care of a child and the child being considered the 

exclusive responsibility of his or her family. 

Institutional care represented an almost pure example 

of the State assuming responsibility for the care of 

disabled children. As individuals with disabilities 

came to be seen in a more humanistic way, and 

the pendulum swung away from institutional care in 

the United States, responsibility for the care of 

children with disabilities came to be relegated 

almost exclusively to their own families. The 

concept of shared care, or the shared responsibility 

of the State and individual families for the care of 

disabled children, was missing. 

In Britain the concept of shared care led to 

the delineation of "short-term care" as a needed 

service in a government circular as early as 1952. It 

was some 20 odd years more before a similar 

delineation occurred in the United States. In the 

1950s and 60s in Britain short- term care was 

provided in "mental handicap hospitals" (the rough 

equivalent of our state mental retardation 

institutions), in pediatric wards of general 

hospitals, and in some residential centers operated 

by voluntary organizations. In Britain the 

deinstitutionalization movement of the 1970s was 

seen as a shift in the shared care ratio or balance, 

with families of children who formerly had been 

institutionalized or who might have been 

institutionalized assuming greater responsibility for 

their children's care. It was not perceived as an opportunity for the State to bow out and expect 

families to do the whole job alone. In this light, the 

Department of Health and Social Security of the 

British government promulgated a guidance paper in 

1971 advocating the establishment and provision of 

sitter services and temporary residential care by 

local governments and voluntary agencies 

(Robinson, 1984). 

It was also because of the concept of shared care 

that the decrease in the use of institutions for the 

long term care of children in the 1970s was 

accompanied by the increasing utilization of these 

facilities for short term care. As the movement back 

to community care progressed, some residential 

schools and small residential homes were converted 

to respite care centers for children. 

The mid 1970s marked the beginning of what 

may be referred to in Britain as "special fostering 

schemes," by which may be meant any one of a 

variety of on-going arrangements between 

individuals or families serving as respite care 

providers, and the families that are the recipients 

of this service. This is a very popular mode for 

providing respite care services in Britain today. 

At this point let me back up a bit. Earlier, in 

discussing the status of respite care services in the 

United States, I stated that respite care cannot be 

considered apart from a framework of family 

support services. If this is true, then I cannot really 

elucidate respite care services in Britain without 

presenting the framework for this service. The 

"shared care" concept is basic to this framework. 

Britain provides a series of non-means tested 

allowances to families. The "child allowance"

133
is a cash payment made to all families with children 

regardless of income or health status. In addition, 

there are several disability allowances. (Transparency 

#1) The "attendance allowance" is a benefit paid to 

an individual from age two up who, because of a 

mental or physical disability, needs help from 

another person. A higher rate is paid if the individual 

needs supervision or assistance at night as well as 

during the day. Family income is not a factor. 

The "invalid care allowance" (introduced in 

1976) is a cash allotment provided to the child's primary caregiver if this individual spends at least 35 

hours a week caring for the child and does not 

engage in substantial employment or attend school 

full time. There is also a "mobility allowance" 

(also introduced in 1976) available to individuals 

from age five up who cannot walk or who have 

great difficulty walking. Again, this is non-means 

tested. If we look at the first transparency you will see 

these disability benefits. (The child allowance is not 

included because it is not a disability benefit.) 

All of these benefits come from Britain's 

Department of Health and Social Security. The 

attendance allowance rates as of July 1986 were 

about $34.00 and $51.00 per week, with the higher 

figure for more severely impaired children. The 

invalid care allowance varies depending upon the 

number of dependents that the primary caregiver 

has. If the primary caregiver has only himself or 

herself as a dependent the benefit is about $38.00 

per week (as of July 1986). If the primary caregiver 

has another dependent child another $13.00 per 

week would be added. The mobility allowance was 

about $35.00 per week as of July 1986. As you can 

see, a parent of a severely disabled child might 

receive $89.00 per week starting with the child's 

second birthday for serving as the child's primary 

caregiver. When the child reaches age five, if he or 

she cannot walk or has great difficulty walking, the 

benefit would go up to $124.00 dollars per week. 

We are talking now of about $6,500 per year to 

the primary caregiver or $4,600 if the child does 

not have a serious mobility impairment. 

In addition, if you look at the transparency you 

will note that the health and medical care of the 

child is provided free of charge through the 

National Health Service. By health care I refer 

mainly to a system of health visitors who go into 

the homes of all families of young children, 

starting in the first month after the child's birth. It is 

the health visitor's responsibility to identify problems 

or potential problems and to ensure that appropriate 

resources are brought to bear. Young children with 

disabilities get particular attention from health 

visitors, who visit these babies' homes more often 

than the homes of children not demonstrating developmental problems. 

The third item on Transparency #1 is The 

Family Fund. This is a fund financed by the central 

government but operated by the Joseph Rowntree 

Memorial Trust. Its job is to help families with 

severely disabled children by lump sum grants for 

specific items, e.g., washing machines and 

dryers; a holiday for the whole family. 

Now let us compare these benefits to the 

benefits available in the United States from the 

federal government for families with severely 

disabled children. The benefit that comes to mind 

immediately is Supplemental Security Income or SSI. 

SSI is available to individuals with disabilities aged 

18 and over irrespective of family income. 

However, in the case of children under age 18, 

family income is considered in determining 

eligibility. Thus, while very low income families of 

children under age 18 may receive SSI, other 

families will not, except by individual waiver. SSI 

is not seen as a right of families because of the extra 

financial and/or care demands involved in raising a 

child with a disability. It is provided only when a 

family is considered deficient and therefore 

incapable of meeting its responsibility. Medicaid 

reflects this same pattern, being available only to 

families with extremely low incomes. This is true 

in spite of the fact that the extra cost of raising a 

child with a disability might be as high as 

$95,000.00 when no surgery is involved, 

$126,000.00 if surgery is involved (United Cerebal 

Palsy Associations, 1986), and these figures in no 

way reflect the extra care demands upon the family. 

There is no concept of shared care reflected here, 

and no equivalent to the non-means tested benefits 

available to families of children with disabilities in 

Britain. 

Now let's look at local government responsibility for family support services in Britain 

(Transparency #2). Disability related services, 

located on the left side of this transparency, derive 

from the Chronically Sick and Disabled Persons 

Act of 1970. This law directs local governments or 

"local authorities" as they are called in Britain, to 

assess and provide for the service needs of 

individuals with disabilities in the areas of help in 

the home, aids and adaptations, recreational 

facilities, transportation assistance, and holidays. In 

practice, there is great variation in the extent to 

which local authorities provide such services, much 

as there is great variation between states and even 

between regions within the same state in the 

provision of such services in the United States. In 

fact, families residing in an area where the local 

authority provides very generous amounts of 

family support services may be afraid to

134
Transparency #1 

Support Services for Families of Children with Disabilities 

Central (Federal) Government Provision 

135 
Transparency #2 

Support Services for Families of Children with Disabilities 

Local Authority (Government) Provision 

136 
move to another area where the allocation of such 

resources might be less generous. 

Now let's take a fuller look at the array of family 

support services in Britain (Transparency *3). 

Most of these services are very familiar to us — 

parent education, parent counseling, day care, respite 

centers, in-home respite, drop-in centers, respite in 

the home of the provider. Let me make a few 

comments about aspects of family support services 

that may be less familiar. One of these is the concept of family centers which began to take hold 

in Britain in the late 1970s. The family center may 

be a center serving all families in 

a particular community, or it may focus upon serving 

families of children with disabilities, or it may focus 

upon serving all families of young children in a 

community. The defining characteristic of these 

centers is that they have a commitment to working 

with parents and children rather than to children 

alone, and they have as a major objective 

improvement of the quality of family life (De'Ath, 

1985). Family centers operate a variety of services, 

including many of those services listed on this 

transparency and others. This is a model we 

could well emulate in our local communities. 

Toy libraries are widespread in Britain. They 

are a major resource for young handicapped 

children and their families. Toy libraries may be 

attached to family centers, special schools, 

playgroups, or hospitals. They may be operated by 

parent volunteers. Health visitors, local authority 

social workers, occupational therapists, and physical 

therapists often keep in close contact with the toy 

libraries in the communities they serve. There was a 

toy library initiative in the United States in the early 

1970s focused primarily on the needs of low income 

families, but with modifications designed for applicability to families with young handicapped 

children. However, the toy library movement didn't 

become, in this country, the widespread resource it is 

for parents of young children 

in Britain, even though the movement experienced 

something of a revival in the 1980s. Perhaps the 

movement failed to take strong hold here because of 

the narrower focus of toy libraries in the United 

States. Toy libraries in Britain provide friendship, 

learning and support for primary caregivers as well 

as toys for children. It may be time to try this idea 

within the British sense of a toy library. 

Let me just mention that parent self-help groups 

and help lines for parents — many of the latter run 

by parent self-help groups — are flourishing in Britain. 

Self-help groups are often affiliated with national 

voluntary organizations which nurture and support 

them. 

While we in the United States are very active in 

providing camp and day camp experiences for children 

with disabilities in the summer, and there are 11 

month school programs for children with severe 

disabilities, we do very little to provide respite for 

families during school holidays, such as the winter and 

spring breaks. Britain responds to this need 

by the widespread operation of holiday play 

schemes, usually day recreational programs 

provided specifically for the purpose of keeping 

children engaged and giving families respite when 

schools are closed. 

You will also note a circle on this transparency 

entitled "befriending schemes." This term, and others 

(Oswin, 1984) are used to refer to what is termed 

short term fostering in Britain. This may be a service 

provided on a volunteer or paid basis. The use of 

terms such as "befriending schemes" was meant to 

prevent stigma or the implication that this service was 

needed because the family was inadequate. It was also 

meant to indicate a desire to foster relationships 

between families as well as between respite 

providers and the child with a disability. 

Virtually every major study of respite care 

programs conducted from the late 70s to the mid 

80s in the United States found that the most 

significant problem or deficiency with these 

programs was inadequate allotments of service time 

(Cohen & Warren, 1985). I propose that this 

situation arose because of the absence of a concept 

of shared care. In Britain respite care service 

provision is the responsibility of local government, 

and both the quantity and types of services vary from 

local authority to local authority. In addition, in 

1984 under Margaret Thatcher's leadership the central 

government was given power to limit the spending 

levels and tax rates of local governments, and the 

central government is holding back funds from local 

authorities spending above central government 

targets. There is great concern in Britain about the 

effects of these actions upon services for families of 

children with disabilities. However, because the 

concept of shared care exists, the amount of respite 

care being allocated to families of children with 

severe disabilities by some local authorities exceeds 

that of even our most generous programs. Some 

families receive up to 12 weeks per year of respite 

care. Some severely handicapped children may be 

cared for at a respite facility for two days of each 

week. Five to six weeks per year of respite care for 

a family is not uncommon. 

After my return from my fellowship trip, I was 

contacted by a family that had recently moved from 

England to New Jersey. Their son has mental 

retardation and behavioral pro137 
Transparency #3 

Support Services for Families of Children with Disabilities 

Voluntary Organizations* 

*Often funded by local authorities 

*Often funded by local authorities. 

138 
blems. This family bemoaned the loss of respite care 

services which they had received on a regular basis 

in England. They had contacted all of the appropriate 

government and voluntary agencies to no avail. There 

was no respite care program for their son in their area 

of New Jersey at that time. Just before making this 

presentation I made contact with these parents again to 

find out how the family had progressed. Their son was 

now in a residential school, the mother explained that 

the only respite care service they had been able to 

locate was one that would have provided a sitter in 

their home for $8.00 an hour. This is not what the 

parents needed. They wanted to be able to rest and 

relax in their own home. In England they had outof-home respite care for their son. In New Jersey the 

only out-of-home respite they had been able to 

obtain came in the form of summer camp. Nothing 

was available during the remaining ten months of 

the year. 

CONCLUSION 

In concluding my remarks, I will go back again 

to the concept of shared care. It is time that we gave 

programmatic recognition to society's responsibility 

to assist families of children with severe disabilities. 

We can do this through a benefit, such as a nonmeans tested SSI benefit, that gives recognition to the 

extra financial burden borne by families of children 

with severe disabilities. Apart from the financial 

assistance such an allowance would provide, it would 

also bolster the parent's decision making role in 

obtaining the assistance their child and family needs. 

The concept of shared care should also be reflected in 

the establishment of a variety of types of respite 

care and other family support services in communities 

in all regions of all states, so that every family of a 

child with severe disability has access to such 

programs. The stature of the federal government 

should back this goal, much as the British central 

government did in its "White Paper" or "Guidance" in 

1952 and again in 1971. 

REFERENCES 

Cohen, S., & Warren, R. D. (1987). Child abuse, 

family support services, and disability. New 

York: World Rehabilitation Fund. 

Cohen, S., & Warren, R. D. (1985). Respite care: 

Principles, programs, and policies. 

Austin, TX: Pro-Ed. 

De'Ath, E. (1985). Self help and family centers. A 

current initiative in helping the community. 

London: National Children's Bureau. 

Human Development Program Title XX Training 

Project. (1980). Interim report 2: Results of 

national program and training surveys of 

services to developmentally disabled 

children and their families. Lexington, KY: 

University of Kentucky. 

Louisiana Developmental Disabilities Council. 

(1978). Agency and parent needs assessments (respite care). Baton Rouge, LA: 

Louisiana State Planning Council on Developmental Disabilities. 

Oswin, M. (1984). They keep going away. 

London: King Edward's Hospital Fund for 

London. 

Pagel, S. E., & Whiffing, B. (1978). Readmissions 

to a state hospital for mentally retarded persons: 

Reasons for community placement and failure. 

Mental Retardation, 16(2), 164-166. 

Robinson, A. (1984). Respite care services for 

families with a handicapped child. 

London: National Children's Bureau. 

United Cerebral Palsy Associations. (1986, January). 

Cost survey. Word from Washington Analysis. 

139 
Living Services Planning Panel

 MODERATOR: PAUL L. MEDLIN 

 PANELISTS: RONALD S. BARBER 

MATTHEW P. JANICKI, PH.D. 

KENNETH MCGILL 

140 
The Self-Sufficiency Trust of Illinois 

by Paul L. Medlin 

Senior Vice President, Corporate Development, 

Charter Management Group, Ltd. 

Elmhurst, Illinois

HISTORICAL DEVELOPMENT AND INTENT 

On September 11, 1986, Governor James R. 

Thompson of Illinois signed into law House Bill 

3605 now referred to as Public Act 84-1373 

establishing the nation's first SELF-SUFFICIENCY 

TRUST. After several years of research and 

development by the National Foundation for the 

Handicapped, under the direction of James H. DeOre, 

the Self-Sufficiency Trust Act was unanimously 

approved by both the House and Senate as an 

addition to the "Mental Health and Developmental 

Disabilities Code" (Ill. Rev. Statutes, Chapter 91-1/2, 

Sections 5-118 and 5-119). 

The Self-Sufficiency Trust ("SST") is the first 

trust of its kind which provides a financing 

mechanism to facilitate the coordination and 

integration of private family financing for persons 

who are disabled while maintaining eligibility for 

governmental entitlement funding. As a truly 

private sector initiative, the SST makes possible the 

flow of private monies into the state's network of 

publicly sponsored programs to supplement, enhance 

and expand services to all the disabled of the state. 

The SST has removed many of the barriers faced 

by parents or families with adult or minor 

dependents who are disabled, when planning 

financially for a secure future, especially after the 

death of the parents. 

Relatives and families of persons with disabilities 

have searched for a means by which they could 

contribute toward the present and future cost of care 

without the endless penalties traditionally 

associated with the use of private funds and the 

resulting negative impact of the loss of the 

individual's governmental entitlement funding. The 

SST's intent is to "supplement" these sources and not 

to "sup plant" them, thus making available new funds to 

enhance service delivery and meet the special needs 

of the individual who is disabled. 

As a state law, the SST recognizes its mandate 

to make available its services to all individuals of the 

state who are eligible for the services provided by 

the Department of Mental Health and Developmental 

Disabilities. Charitable provisions are inclusive in the 

SST model to accommodate the low-income 

disabled who make application. 

The innovative Self-Sufficiency Trust of Illinois 

is the first program to accommodate the need for 

private-sector income streams to supplement the 

limited and often insufficient public dollars available to 

expand the service delivery system for our citizens 

who are disabled. 

SST: ELIGIBLE INDIVIDUALS 

Persons who are developmentally disabled, and/or 

mentally ill and who are eligible for services under 

the "Mental Health and Developmental Disabilities 

Code" and their families may participate in the SST. 

Additionally, persons with physical handicaps, 

although not specifically designated in the law, will 

also become an eligible group as provisions are 

developed to meet the special needs of this group. 

In general any family with an adult or minor 

dependent may participate in the SST as long as 

their identified needs can be successfully 

accommodated by SST programs and services. 

SST: PROGRAMS AND SERVICES 

As the Self-Sufficiency Trust of Illinois is 

implemented state-wide, a diverse array of services will evolve based on the identified needs 

of the SST participants and their families. In 

general, most services now available through 

141 
the current service delivery system will be 

accessible through the SST. New or expanded 

services are possible once demand and resources 

are clearly identified through the DISABLED 

POPULATION PROFILE SYSTEM. Each SST 

applicant's data will be input into this unique data base 

resulting in systemic and individual service needs 

identification by disability type, functioning level(s), 

age group, service(s) needs, geographic location, and 

numerous other socio-economic and demographic 

fields. From this case information, SST services 

will evolve to accommodate individual and group 

needs. The SST cannot promise all services 

immediately. 

The major restriction the SST must place upon 

such services is that the Private Fund dollars cannot be 

used to meet the same needs 

as those intended to be met through available public 

assistance programs. Typically included are 

Supplemental Security Income (SSI) and medical 

coverage under Medicaid (Title XIX) programs. 

Basically SST dollars cannot be used to meet food, 

shelter, clothing or medical needs of persons who 

are disabled and receive SSI or Medicaid benefits. 

SST will participate in non-room-and-board cost 

components of residential service programs. 

Individual LIFE-CARE PLANS will define 

those "supplemental" services which the family wish 

to fund for their dependent who is disabled, either 

now or in the future. Any attempt to utilize the 

private funding for services which would normally be 

provided under the provisions of SSI or Medicaid 

will jeopardize the standing of the Self-Sufficiency 

Trust with the Department of Health and Human 

Services, specifically the Social Security 

Administration and the Health Care Financing 

Administration (HCFA). It is critical during the 

orientation and initial SST LIFE-CARE PLAN stages 

that families fully understand these restrictions and 

their impact on the SST. A LIFE-CARE PLAN -

PARENTAL SELF-ASSESSMENT will help families 

focus on eligible SST services and functions. 

Families must be informed that SST Private Fund 

(and Charitable Fund) monies may be spent on 

behalf of designated beneficiaries for: 

 Social Services 

 Rehabilitation and Remedial Services 

 Educational Services 

 Recreational Programs 

 Respite Services 

 Habilitation Services

 Training programs to assist in managing 

activities of daily living 

In addition, monies may be transferred to the 

State Fund and, in combination with state general 

revenue funds, used for: 

 A portion of the cost of residential facilities and 

services where SSI and Medicaid recipients reside. 

 As the state share of Federal Financial Participation (FFP) to pay per diem rates to 

residential facilities (Medicaid providers). 

 To expand services offered by DMH-DD. 

Finally, SST monies may be used to pay for 

guardianship and advocacy services which include 

home visitation and case monitoring to insure 

appropriate care and treatment are being provided to 

SST beneficiaries. The following services may be 

funded by SST Private Trust dollars (interest 

income) upon the activation of the SST individual 

LIFE-CARE PLAN, or, if SST participation is after 

the death of the family, they may be purchased on a 

monthly fee-for-service basis through a provider 

agency: 

 Co-Guardianship or Successor Guardianship of 

Person. 

 Personalization Advocacy Services. 

 Home Visitation and Monitoring Services. 

 Residential Search Services. 

 Home Search Services. 

SST Advisors will assist families in identifying 

providers of these services. 

SST: THE MODEL: 

The Self-Sufficiency Trust is an irrevocable, 

"pooled-income trust" with spendthrift and discretionary trust language and clearly defined 

"charitable" and "private" trust provisions. It may 

take on an Inter-Vivos (Living) Trust or 

Testamentary Trust (via a will) classification, 

depending upon when the grantor designates the 

trust to activate. Regardless of its similarity to other 

trusts, provisions or classifications, its structure and 

benefits are uniquely designed to facilitate active 

parental financing of supplemental care of the 

disabled without disruption of SSI and Medicaid 

benefits. Unlike a corporate managed trust, it is not: 

1. A financial planning model to protect or preserve assets for heirs or remaindermen — 

rather, it is solely to benefit a disabled beneficiary for the duration of his/her lifetime; 

2. A tax-avoidance or shelter mechanism — 

The Grantor's tax obligations must be determined by his or her accountant; 

3. A mechanism to set aside large amounts of 

capital — rather, the model is based on a 

predetermined principal amount which is 

142 
necessary to generate a flow of income to pay 

for specific supplemental service needs for the 

life of the disabled beneficiary as identified in 

the LIFE-CARE PLAN. 

4.A mechanism to pay for CARE, COMFORT, nor 

SUPPORT (clothing, housing, food, medicine - 

medical care) — rather it is to supplement daymode programming and/or education, training and 

therapeutic service costs within a licensed 

residential setting. To pay for costs associated 

with care, comfort or support would be to 

supplant what Social Security (SSI) and Medicare 

pays and renders the beneficiary ineligible for 

these entitlements. 

5.A guaranteed source of housing opportunities for 

the disabled — rather, through the Disabled 

Population Profile System it matches like-family 

housing needs and refers classes of families with 

dependents who are disabled to sources of existing 

or start-up housing assistance. 

The structure is as follows: 

 Two wholly separate pooled-income trust funds 

exist as part of the SST structure. Each of the two 

funds has a counterpart public sector or State 

Trust Fund by virtue of the public law enacted by 

each state. 

 The Private Trust Fund accepts, holds, and invests 

the "pooled" assets of each family participating in 

the SST. Although assets are commingled, all 

returns on investments are credited 

proportionately to each "private trust" account. 

Interest earnings on Private Trust Fund assets are 

transferred at the direction of the Trustees and the 

parents or guardians, who serve as Co-Trustee, to the 

counterpart State Trust Fund which immediately 

disburses the assets for the supplemental 

goods or services to be provided. The Department of Mental Health and Developmental 

Disabilities may be designated to hold the State 

Trust Fund and these funds are generally 

disbursed by the state treasurer. Technically, 

funds disbursed from the State Trust Fund become 

State Trust Fund monies and are not viewed as 

earned or unearned income to the disabled Trust 

Beneficiary, therefore not affecting public 

entitlement eligibility under Supplementary 

Security Income (SSI) or Medicaid. 

 Another trust fund controlled by the Board of 

Trustees is the Charitable Fund. This fund is a 

repository to accept residual and donated assets 

earmarked for low-income and indigent persons 

with disabilities who are unable to participate in 

the Private Fund. This important part of the SelfSufficiency Trust model is supported by: 

1.Assets left to the Charitable Fund by grantors of 

Private Funds at the death of the disabled 

beneficiary (50% of residual principal of each 

Private Trust): 

2. Contributions from private donors, bequests, 

corporations or foundations, and appropriations from state general revenue funds; 

Earnings on the principal of the Charitable Fund 

can be transferred to the State Fund for the 

Developmentally Disabled allowing low- income 

and indigent disabled individuals to participate in 

the SST concept. 

 A Volunteer Board of Trustees is appointed from 

the private sector (parents and professionals) to 

manage and control the Private & Charitable Trust 

Funds. The parent or family member who 

establishes a trust is called the Grantor, and his/her 

dependent is the Trust Beneficiary. The Grantor or 

his designee serves as Co-Trustee and shares in 

trust disbursement decisions. As Trustee, the Board 

of the SST must exercise discretion and 

judgement and return ownership (legal title) to 

the property (assets) of each Private Trust. 

Through the use of agents, it may carry out its 

obligations to prudently control and manage trust 

assets. The Self-Sufficiency Trust of Illinois uses 

three primary agents: a fiduciary agent, Illinois 

Regional Bank, to invest the pooled assets of the 

Funds; a SST service agent, PACT, Inc. and selected 

Case Management Units, to provide intake and 

orientation services to families and to 

broker/monitor SST services; and Charter 

Management Group, Ltd., as technician consultants 

for SST operations. 

 At the direction of the SST Board of Trustees, the 

state counterpart fund under control of DMH-DD 

receives the disbursement (interest income) from the 

Private Fund for each SST beneficiary. These funds 

are accompanied by specific payout directions in 

accord with the LIFE-CARE PLAN. After insuring 

that the specific care, support, or treatment requests 

are consistent with the rules and agreements of the 

law, DMH-DD will approve a voucher for 

payment to the designated service provider by the 

Comptroller. 

 The DISABLED POPULATION PROFILE SYSTEM, is a computerized data base designed to assess the 

non-clinical functional abilities of the SST 

beneficiary, to identify specific life- care service and 

appropriate residential setting needs, and to project 

present and future costs. Each SST applicant will be 

input into this system and the statistics will be used 

143 
to coordinate service development and provide 

valid out-year service need and fund 

appropriation needs. Of course, confidentially is 

protected in accordance with the law. 

 A LIFE-CARE PLAN is developed for each participant which embodies the wishes of the parent 

(Grantor) and defines the intent and nature of 

supplemental services to be provided the disabled 

participant. Trained Self- Sufficiency Trust 

Advisors provide the direction for parents to 

develop a realistic and need-specific plan. 

In summary, the SST Model is unique in its 

structure and specific in its intent. As a nontraditional financial planning mechanism, its force is 

solely to facilitate supplemental funding for 

service-oriented components of the communitybased service system for the disabled, while 

preserving public entitlement funding. Its purpose 

will benefit both individual beneficiaries and the 

system at large, but it may not meet the estate 

planning expectations of all families 

 If you are interested in more information or wish to 

have an appointment to learn more about the SelfSufficiency Trust, contact: 

Self-Sufficiency Trust of Illinois 

340 West Butterfield Rd. - Suite 3C 

Elmhurst, IL 60126 

Phone: (312) 941-3498 

Finally, as moderator of the Life Services 

Planning Panel, I want to reinforce the need for 

innovative and private sector initiatives which 

eliminate barriers for family's pro-active participants 

in planning a service future for their disabled 

dependent. 

The Self-Sufficiency Trust model provides a 

win-win situation for Federal and State governments, 

community provider networks, families and most 

importantly the disabled. It is a valid medium by 

which each of their entities can effectively form 

partnerships to benefit both the system and the 

disabled population. 

When parents and families with children who 

are disabled ponder the future, they face concerns 

that parents of non-disabled children do not. They 

must provide a life-care legacy which will not 

render their disabled dependent vulnerable at the 

parent's death. Innovative research and development in 

non-traditional estate and future care planning have 

replaced the usual "catch 22" situations faced by 

families with means to ensure the disabled the protective legacy they each require. The SelfSufficiency Trust model removes the disincentives 

which have traditionally dissuaded viable estate 

planning efforts by parents and includes the 

personalized life-care monitoring and guardianship 

services which significantly reduce vulnerability in the 

future. 

The Trust model was seen as an "estate planning" 

option which would avoid conflict with existing 

rules which paralyzed families from providing 

direct services to their disabled dependents eligible 

for Federal assistance under the Supplemental 

Security Income and Medicaid programs. Further, 

the Trust would encourage the flow of money from 

private sources focusing on expanding supplemental 

services to the disabled. This new private- public 

initiative encourages parents, state government and 

service providers to work together to plan now for a 

secure future for the disabled. 

My recommendation is simple - each State should 

look at the merits of the "Self-Sufficiency Trust 

Model" and how it can benefit the disabled and 

enhance their life-long service options. 

On behalf of the National Foundation for the 

Handicapped, I wish to extend congratulations to the 

President's Committee on Mental Retardation on a 

job well done and appreciation to the PCMR Staff 

for their individual hard work and cooperation. 

144 
Planning for Economic Security 

by Ronald Barber 

Department of Economic Security 

Division of Developmental Disabilities 

Phoenix, Arizona

I am pleased to be with you at this important 

national forum on community integration for citizens 

with mental retardation. This is 

a topic of great significance in our field and in our 

country at this time, and it is to the 

credit of the President's Committee on Mental 

Retardation that such a conference has been organized. 

During this session I want to share with you ways 

in which we can most effectively engage in life 

services planning for people with mental retardation. 

Before I get to the specifics of this topic, however, I 

would like to discuss the Arizona context within 

which we have developed our current thinking, 

planning processes, and service system. 

The history of service development in Arizona is 

not unlike that of other states. Development has, 

however, been accelerated over the past ten years due 

to litigation, legislative attention, and the absence of 

Federal constraints on how resources should be 

expended. 

We began, as did every other state, with institutions 

at the center of the service delivery system. Over a 

period of 30 years, we constructed three institutions 

and attempted to deliver a full range of services in those 

facilities. Services included residential programs, 

vocational training, and even infant stimulation and 

preschool programs. While it may have been more 

efficient to locate everything at these sites, it 

certainly did not advance of opportunities for 

integration with the community. 

In 1977 Arizona developed a five-year plan which 

called for deinstitutionalization and the creation of 

community based alternatives. Within a three-year 

period, over 150 group homes were established 

statewide. In every community children with 

disabilities were integrated into regular preschools with 

non-disabled peers. People with developmental 

disabilities, who previously had only been served in 

sheltered workshops, now found employment in the 

private sector through competitive placement and 

work stations in industry. In order to support all of 

this community movement and to ensure proper 

coordination of the dispersed service system, new 

statewide case management services were 

implemented. We are now entering what one could 

consider the final phase of deinstitutionalization in 

Arizona. - In August 1988, one of our three 

institutions will close, and discussions are underway 

to determine the future of the two remaining 

facilities. 

We are at this time embarking on a new era of 

development, which hopefully will 

build on our experiences over the last several years and 

will capitalize on both the successes and failures of the 

deinstitutionalization drive. We are calling this the 

Family Support Initiative. It seeks to provide additional 

supports to families who want their developmentally 

disabled relative to remain at home and to provide 

supports to individuals with developmental disabilities so 

that they can be more independent once they leave 

their family home. This initiative, like the previous 

activities of our department, is driven by a strong value 

system. These values include: 

1.A recognition that families do, in fact, have a great 

deal of power and that systems that serve families and 

individuals with developmental disabilities should not 

diminish that power, but instead should enhance it. 

2. Services should be developed around the assessed needs 

of the individual or family, and not driven by what is 

available. This is a 

145 
movement away from "slots" and toward an 

individualized service array. 

3. Greater emphasis should be placed on building 

interpersonal relationships for individuals with 

disabilities. I am afraid that too little attention was 

paid to this important aspect of life services 

planning when we were engaged in 

deinstitutionalization efforts. The result across 

the country has been that people with 

disabilities are living in communities without 

friends and without connections to non-disabled 

peers. Unfortunately, we may well have traded 

the isolation of institutions for the isolation of 

living without friends in the community. We seek 

to change this situation by ensuring that 

Individual Program Plans include goals for 

building relationships. 

4. We recognize that the delivery of services to 

people with disabilities cannot solely be the 

responsibility of government or families. It must 

also be a community responsibility. As we look 

to the future, this means that we will be 

securing services and supports from a variety of 

community resources, those same resources that 

are available to you and to me. We will be 

contacting churches and clubs, and civic 

organizations, and neighborhood associations, 

and all of the other groups that make up a part of 

our life so that people with disabilities can benefit 

from this kind of access to their community as 

well. Case managers are being asked to serve as 

catalysts for the development of family, 

individual, and community responsibility. 

Dependence by people with disabilities and their 

families upon case managers needs to be 

minimized wherever possible. We need to 

consider transferring case management 

responsibilities to family members. Case 

managers will be the most significant staff 

player in moving people towards greater 

independence and community integration. 

The new era of service development in 

Arizona for people with disabilities and their 

families is designed to enhance opportunities for 

economic and social security. Initiatives are 

underway and new ones will begin, in order to 

demonstrate and explore a variety of options for 

people with disabilities. 

In the area of job training and employment, the 

state has developed a three-year Adult Services plan, 

which has as its major goal moving people from 

sheltered to integrated employment. Various 

funding sources have been used to advance this 

concept. 

A project known as Structured Training and 

Employment Transitional Services (STETS) was 

started with funding from the Manpower 

Demonstration Research Corporation in New York, 

and although the demonstration project has ended, 

STETS continues. Today funding is provided by the 

Joint Training Partnership Act and state 

appropriation. Through this program, adults with 

developmental disabilities are being evaluated, trained 

and placed in either competitive or supported 

employment with community businesses. The 

success rate and cost effectiveness of STETS has 

been recognized nationally. 

Over the past year, the Division of Developmental Disabilities and the Rehabilitation Services 

Administration have developed joint funding for 

services to people with severe disabilities. The 

Division of Developmental Disabilities has 

provided the match for additional federal funds to 

Vocational Rehabilitation. These funds have been 

used by Vocational Rehabilitation counselors to 

place almost 100 developmentally disabled people 

in training and evaluation services. These 

individuals eventually will be placed in either 

competitive or supported employment situations 

and will receive ongoing services from the 

Division of Developmental Disabilities. This is an 

example of how two state agencies can 

cooperatively work together to serve people with 

severe disabilities in innovative ways. 

The state of Arizona was one of the first 

states to be selected by the federal government to 

receive a supported employment demonstration 

grant. This grant has complimented the work that 

was pioneered by STETS and by the joint VR/DDD 

funded project. 

All of these initiatives are moving Arizona 

steadily towards employment services that are 

primarily outside of segregated sheltered 

workshops. Self-sufficiency is replacing 

dependency for people with developmental 

disabilities. These advances are being accomplished 

through a partnership between federal, state, and 

local governments, in cooperation with the private 

sector. Planning for economic security, therefore, is 

increasingly being conducted in an environment 

that provides real work and real pay for 

developmentally disabled adults. 

In the area of residential and community living 

alternatives, Arizona is taking steps that will also 

enhance real economic and social security. Pilot 

projects are underway across the state assisting 

people with disabilities to move from provider 

owned or leased group homes into apartments of 

their own. This year at least four of the 14 state 

operated group homes will close and the individuals 

who reside there will be moving into apartments 

where they will receive staff support as needed. 

Moving to apartments and other small living 

arrangements is an important step in creat146 
ing greater integration into the community, but it 

also provides the opportunities for greater choice. 

Every effort will be made to help people with 

disabilities in choosing their roommates, where 

they want to live, how the environment should be 

decorated and furnished, and ultimately, who will be 

hired as staff. All of these changes are initiated 

through the Individualized Program Planning 

Process (IPP) to ensure consumer and guardian 

involvement in the decisions. 

In the past, success in a residential setting such as 

a group home meant that the disabled person would 

be "rewarded" by a move to another setting. 

Success, therefore, brought a loss of friends, a loss 

of neighborhood and the opportunity to adjust to 

an entirely new environment. A new approach is 

now being pursued. Instead of people with 

disabilities having to move when they achieve 

greater independence or success, staff 

supervision, monitoring, or support will 

decrease. Success in acquiring new skills and 

greater independence will be rewarded by 

stability in new environments and relationships. 

The idea of service continuum is also being 

challenged under the new Arizona approach. 

Traditionally in every state, people with disabilities 

move from institutions to "intensive" group homes 

and then to less intensive group homes, and perhaps 

eventually into supervised apartment or semiindependent living situations. This notion of the 

continuum suggests that settings, not an appropriate 

array of services, are critical to the delivery of 

programs. Efforts are underway to allow people 

with disabilities "to leap over the continuum". In 

one such example, a young man with severe 

disabilities and self- injurious behaviors who has 

resided in the state hospital for almost eight years, 

has moved directly into an apartment of his own, 

which is staffed in accordance with his needs. In 

time he will meet other people, both with and without disabilities, in order to choose a compatible 

roommate. 

Part of the Arizona dream is that more and more 

people with disabilities will be able to rent or 

even purchase their own home. In fact, initial 

discussions have begun with a national financial 

institution to look at ways in which low interest 

mortgages can be made available to developmental 

disabled people themselves. 

Yet another aspect of realistic economic 

planning has to do with taking a hard look at the 

ways in which Individual Program Plans are 

constructed. Typically, in Arizona, and I am sure 

this is true of virtually every state, IPP's concentrate 

on specific tasks having to do with activities of daily 

living or employment training. Rarely do these plans 

address issues related to the development of friends 

or interpersonal relationships. Training is now 

being developed in Arizona that will encourage 

case managers and other team members to look at 

this very important aspect of life. All of us count on 

our family, friends, co-workers and social contacts 

for support. Why should this be any different for a 

person with disabilities? And yet we know that for 

most people with disabilities, their primary support 

system comes from people who are paid to work 

with them. We are now building into IPP's 

objectives that have to do with the establishment 

of social networks and support systems that go 

beyond paid employees. 

Many people with disabilities live with parents 

or other family members and in Arizona new 

emphasis is being given to supporting these families. 

There are, of course, respite services available, but 

now a new approach is being employed that allows 

families to choose their own respite provider and to 

receive a subsidy from the Division of 

Developmental Disabilities to cover the cost of care. 

Additionally, in 1986 the Arizona state legislature 

authorized the first-ever cash subsidy program for 

families with developmentally disabled members. 

This cash subsidy provides up to $400 per month to 

the family so that the family itself can purchase 

needed services. The subsidy program is very 

flexible and there are few items or services that 

cannot be purchased by the family. 

We are also encouraging the transfer of case 

management responsibilities to family members and 

to people with disabilities themselves. In our view 

there is no reason why many families and disabled 

individuals cannot handle many of the case 

management functions that have been routinely a 

part of the case manager's responsibility. This is a 

recognition that families do have power over 

their lives and that sometimes state and private 

providers, with the best motives, end up taking this 

power away. If families and people with disabilities 

are supported as being competent to case manage 

their own affairs, planning for economic security 

can become more relevant to the family. 

The Division of Developmental Disabilities in 

Arizona is part of an umbrella agency known as the 

Department of Economic Security. This relationship 

with public welfare and employment related 

agencies is being used to enhance One economic 

security of people with developmental disabilities. 

Special agreements are in place that facilitate access 

to food stamps, general assistance, supplemental 

payments, day care and other services that are 

available to the population in general. In the near 

future, an agreement will be finalized to enable the 

Job Service to conduct job development and placement for people with developmental disabilities.

147 
Ensuring economic security for people with 

disabilities requires that we must expand and 

enhance the integration of service delivery with 

programs such as these. The key, of course, is a 

strong and competent case management service. 

In October of 1988, Arizona will become the 

last state in the union to utilize Title XIX funds for 

services to people with developmental disabilities. 

Being the last gives us an opportunity to break 

new ground and to explore different approaches to 

service delivery. This opportunity, also, is being 

seen as a way to enhance the economic security 

of people served by our agency. 

The Arizona Title XIX demonstration will 

utilize a pre-paid and capitated funding approach 

to the delivery of acute and long-term care services. 

This is very similar to the Health Maintenance 

Organization (HMO) approach to medical services 

in which many people in this country are enrolled. 

Arizona has chosen to establish very few 

Intermediate Care Facilities for the Mentally 

Retarded (ICF/MR). In fact, less than 300 residential 

placements will be certified as ICF/MR. The 

emphasis instead will be on funding home and 

community based services. There will not be a cap 

on the number of people who can be enrolled, but 

there will be a cap on the costs that will be 

reimbursed by Title XIX. This obviously puts the 

onus on the state to find cost effective and highly 

integrated services. 

A new rate setting methodology for services will 

be driven by the individual needs of people with 

disabilities. There will be incentives to providers for 

moving people towards greater integration. 

Essentially, money will follow the client, providing 

choices to the client and/or family that have never 

been available before. 

Needless to say, this approach to funding and 

service provision provides for considerable 

economic security, in that providers do not own 

the resources. Instead, resources are controlled by 

people with disabilities or their guardians. 

All of these innovations, which hopefully 

strengthen families and move people with disabilities 

to greater self-sufficiency, require state and private 

service providers to think outside traditional 

parameters. Bureaucracies have difficulty with this. 

Through training and pilot demonstration projects, 

and the encouragement of risk-taking, we are 

moving Arizona into an era where planning for 

services is largely controlled by families and 

individuals with disabilities. 

None of this will be possible without 

public accountability. The Division of Developmental Disabilities, therefore; has organized a 

planning process which relies heavily on consumer 

input and community participation. This process is 

attempting to clarify the vision and the values of 

this evolving system and to seek community 

ownership of the new steps that are being considered. 

Additionally, the Department's Office of 

Evaluation is being asked to look at specific 

aspects of the new system and evaluate the 

outcome. Evaluation will be conducted around 

consumer satisfaction, cost effectiveness, the level 

of integration of people with disabilities, and the 

attainment of goals such as family support and selfsufficiency. 

Having shared all of this Arizona history and 

current and future activities, I would like to close with 

some recommendations that come out of our 

experience which might be useful to consider in your 

state. These recommendations are also directed at 

bringing about changes in federal and state practices. 

Some or all of these recommendations are directed 

at ways in which public and private sector resources 

can most effectively be used to bring about true 

community integration for people with disabilities. 

SUMMARY AND RECOMMENDATIONS 

1.Planning for economic security must be conducted 

in a larger context that includes an assessment of 

needs for the whole individual and/or family. 

Economic security cannot be ensured in a 

narrow sense. It is part of an overall plan for a 

person with mental retardation and their family. 

2. State and local systems that provide services for 

people with mental retardation must implement 

training for staff such as case managers to ensure 

that certain principles form the foundation of 

life services planning. These principles 

include: 

a. Recognizing that families are empowered to 

make decisions that affect their lives and that 

involvement by public and private agencies 

should enhance, rather than diminish, that 

power. 

b. Services for individuals and/or families 

should be driven by the assessed needs as 

articulated by individuals or families. Too often 

case managers and others decide what they 

believe is in the best interest of the mentally 

retarded person or their family. 

c. The job of providing life services planning and, 

consequently, supports and services, is not 

solely a governmental responsibility. In 

addition to the individual with mental 

retardation and/or their family, community 

organizations must be involved in the 

148 
development and delivery of services. For 

example, case managers should assist mentally 

retarded people in communicating with social 

and recreational services, churches, civic 

organizations, and other entities that people 

without disabilities routinely use as part of their 

overall support system. 

d. Life services planning must pay attention to the 

development of interpersonal relationships and 

supports and not solely concentrate upon the 

delivery of specific services for economic 

benefit. 

3. State government should enact laws that will assist in 

the establishment of mechanisms that will assist in 

the financing of services and homes for people with 

mental retardation. A housing authority, for 

example, could be established to provide low 

interest loans to mentally retarded people so that 

they would be able to purchase their own home. 

This is not the same as providing a low interest 

loan for provider organizations to purchase 

property. Ownership of property by people with 

disabilities should be a goal that will help enhance 

their ability to make important life decisions and 

build economic security. Additionally, state 

sponsored trust funds that permit families and 

disabled individuals to pool resources for the 

common good should also be encouraged by state 

government. 

4. The federal government should consider changes 

in laws and regulations that will permit greater 

flexibility for states in the use of federal resources 

that are directed toward people with mental 

retardation. This would suggest, for example, major 

changes in the way in which Medicaid funds are 

authorized for state and local use. Currently, federal 

laws and regulations encourage the development of 

institutional services as opposed to home and 

community based programs. This is neither cost 

effective nor in the best interests of community 

integration. A proposal that has 

been submitted by the State of Arizona to the federal 

government for the implementation of Title XIX 

funded long term care contains the kind of 

flexibility that is being recommended here for all 

states. 

5. The federal government should consider national 

zoning legislation which would prohibit state and 

local ordinances from limiting the ability of people 

with mental retardation to live in neighborhoods. 

Many states have such zoning override laws, but 

consistency is lacking and some states have no such 

protection. A federal mandate would significantly 

advance the cause of integration. 

6. Technical assistance should be made available to 

states, local government, and public and private 

agencies, so that planning for the future of a person 

with mental retardation truly includes the key 

stakeholders in that person's life. Currently, most 

individual program plans are not individualized, do 

not address the needs of the Whole person, and are 

more system focused than person focused. This 

results in the purchasing of slots rather than an array 

of services for people with disabilities. Training, 

consultants, and technical assistance should be 

provided to address this important problem. Efforts 

such as "Personal Futures Planning", which is 

conducted by Dr. Beth Mount, Dr. John O'Brien, 

Dr. Joe Patterson and Dr. Bud Wetzel, would be 

one approach that could bring about the necessary 

change. 

7. State and local government should receive 

technical assistance and training in changing 

contracting systems. These contracts typically are 

agency driven, and tied to slots. If we wish to 

empower people with disabilities and their 

families, funding should be tied to the person and 

not to the agency. This will enable people with 

disabilities to have the power of the purse and 

will create a system that is more responsive to consumer needs than to agency needs. 

149 
Transition from Worklife to Retirement 

for Older Persons with Mental Retardation 

by Matthew P. Janicki, Ph.D. 

New York State Office of Mental Retardation 

and Developmental Disabilities 

Albany, NY

BACKGROUND 

In the United States, the size and continued 

growth of the overall elderly population are becoming a source of concern for administrators, 

program providers, and public officials. The 

nation's population of elders has doubled since the 

beginning of the century and is expected to triple 

within the early part of the next century. 

According to the US Bureau of the Census, in 

1960 there were approximately 16.7 million persons 

in the United States age 65 and older, comprising 

slightly more than 9% of the population. In contrast, 

the same age population numbered 25.5 million 

persons in 1980, representing slightly more than 

11% of the nation's total population — a 55% 

increase in just 20 years. Expectations are that by 

2000 and 2040, this same age group will have 

grown to represent 13% and 20%, respectively, of 

the population. 

Further, there has been a dramatic growth among 

older generational groups. In this same 20-year 

period, the number of individuals aged 75 to 84 

rose 65%, whereas the number of those age 85 and 

older increased by 174%. Indeed, the age group 85 + 

is the second fastest growing segment of the 

nation's population. Currently, over 60% of all older 

persons are between the ages of 65 and 74, 30% are 

between the ages of 75 and 84, and about 9% are 

aged 85 and older. Because women tend to outlive 

men, the majority of the nation's older population 

are women, and this disparity in longevity increases 

with advancing age. Many of these same trends 

hold true for older individuals with a life-long 

disability such as mental retardation. 

Estimates of the size of the population_ of older 

persons with mental retardation in the United 

States have ranged up to 500,000, depending upon 

the age-related definition of "older persons". Using 

the age break of 60 and above, one projection of the 

number of older mentally retarded persons is for 4 

out of every 1000 older individuals. This results in, at 

minimum, 150,000 older persons with mental 

retardation. Studies have also shown that up to a 

fifth of the populations of state registries of 

mentally retarded individuals are composed of 

seniors. Of this older group, about 50% comprise 

the "young-old" group, about 32% comprise the 

"middle-old" group, and about 18% comprise the 

"old-old" group. Problems of transition generally 

affect those older mentally retarded persons who 

are in age from the fifties to the seventies. 

According to a recently issued report from the 

National Institute on Aging (NIA), "Personnel for 

the Health Needs of the Elderly in the Year 

2020", expectations are that the nation's population 

of older mentally retarded persons will double 

over the next 30 years. Age trends also show that 

women generally outnumber men among mentally 

retarded persons over the age of 50 and while the 

life expectancy of men is increasing the predominance of older women will continue. Further, 

current information indicates that many older 

mentally retarded persons live with their families 

and continue to work well beyond the typical 

retirement age of the early to mid-sixties; how this 

will look in the future remains open to speculation. 

150 
In terms of the older mentally retarded 

population, the National Institute on Aging report 

cited above identified three major groups, each with 

a different demand upon transitional services 

planning and development: 

 The first group is generally made up of those 

individuals with minimal mental or physical 

handicap who have been fairly independent all 

their adult lives and only because of impairments 

associated with aging have they again become 

dependent upon special assistance from social 

services agencies or the aging network. 

 The second group is made up of those individuals with moderate mental or physical 

impairments, who have a need for supervision or 

special training, and who as they age become 

more dependent upon a range of special mental 

retardation/developmental disabilities, social 

services, and aging network services. 

 The third group is made up of those individuals 

with severe or profound mental and/or physical 

impairments, whose gross dependency calls for 

a range of very specialized long-term care and 

habilitation services, and who have been the lifelong responsibility of mental 

retardation/developmental disabilities agencies and 

for the most part will remain so as they age. 

ISSUES AFFECTING THE NATION'S OLDER 

MENTALLY RETARDED POPULATION 

Two significant factors contributed to the 

historical lack of awareness or concern about the 

aging of older adults with mental retardation: (a) in 

the past, persons with severe mental retardation 

had a relatively short lifespan; and (b) many adults 

with mental retardation spent much of their lives in 

public institutions. However, both more readily 

available medical services and improved overall 

health status have now contributed to increase 

longevity. Further, with the nation's 

deinstitutionalization efforts over the past 20 years 

and an increased emphasis on the availability of 

community living and support programs, many more 

mentally retarded older adults are visible and present 

in the community. Consequently, the combination of 

greater longevity as well as an increase in the 

number of known individuals with mental 

retardation residing in community settings has begun 

to contribute to the greater awareness of aging among 

this population. 

Further, Congress recognized the special needs 

of older persons with mental retardation when it 

passed the Older Americans Act Amendments of 

1987 (PL 100-175). Special provisions were 

included for "individuals with disabilities" which 

include persons with mental retardation. These 

provisions recognize the special transition needs of 

older disabled persons and call for closer 

collaboration and coordination of planning 

activities and services between the aging network 

and disability agencies and the inclusion of persons 

with life-long disabilities within the gamut of special 

services available and provided to the needy 

elderly. 

The increased number of older adults with 

mental retardation has posed a number of problems 

that relate to transition: 

 First, increased longevity has created a demand 

for services and special attention that many states 

are ill-prepared to address. Whereas, many states 

had developed child- oriented developmental and 

remedial educational services, and adult-oriented 

vocational and social developmental services, the 

new demand for senior-oriented retardation services was unanticipated. Further, there is a lack of 

agreement among Mental retardation policy 

makers and administrators as to whether to create 

a parallel senior services track within mental 

retardation services or to collaborate with the 

aging network in the use of existing or augmented 

senior services within that network. 

 Second, increased longevity in some cases has 

also resulted in unexpected problems. In the 

instance of older persons with Down syndrome, 

both the occurrence of premature aging and the 

often co-occurrence of Alzheimer's disease has left 

agencies with unique challenges in area of 

developing transitional services to accommodate 

middle age adults who are aging prematurely 

and/or who are experiencing progressive mental 

debilitation. 

 Third, two-generation-elderly families in which 

an elderly parent (or parents) continues to bear 

the burden of care for an aging mentally retarded 

adult son or daughter. Many states have yet to 

link the services generally available to the at-need 

elderly with more traditional mental retardation 

services in such special situations or to be 

sufficiently robust in their service offerings to 

address this special situation. 

 Fourth, the "aging in place" of older mentally 

retarded adults currently living in a variety of 

community residential situations (such as foster 

family care homes, group homes, board and care 

homes, supportive apartments, and the like) who, 

to prevent unnecessary institutionalization, need 

either a shifting in the types of services provided 

or new and broader support services. Many 

states have not yet developed the flexibility to 

adapt their current services models to pre151 
clude having seniors move from their "home" 

simply by virtue of their age and the lack of 

preparedness on the part of the staff or inability by 

the home's administrators to effect simple building 

adaptations. 

 Fifth, older mentally retarded persons who need 

retirement-oriented senior programs in lieu of 

their current vocational involvement. However, 

the available alternatives may not compensate for 

the loss of the social and financial supports 

associated with continued involvement in 

vocational services. Further, the transitional 

supports normally available to non-disabled persons 

(such as pre-retirement counseling, pensions, and 

bridging opportunities) have not been available to 

sheltered workers and those in developmental 

training programs. 

BARRIERS IN THE TRANSITION PROCESS 

Attempts to use the aging network for a variety 

of age-appropriate services usually are 

confounded by a number of barriers posed both by 

the aging network's programs and by the mental 

retardation system's administrators and providers. 

Within the aging network, these include the 

following: 

 "Handicapism" — This is the expression of 

negative attitudes by officials, administrators, and 

other older persons toward individuals with a 

disability; this attitudinal bias manifests itself by 

these individuals not wanting the person who is 

disabled to use their services or to be in their 

program. 

 Economics — Limited monies are usually 

available to groups that provide special services 

for persons who are elderly; these monies are 

carefully guarded. Officials and administrators may 

resent having to spend these limited monies when 

the group having primary responsibility for 

mentally retarded persons should, in their 

thinking, be spending its own monies on older 

mentally retarded persons. 

 Inexperience and Fear — This is rooted in the 

notion that staff working in a program serving 

older individuals will not know how to respond 

to a person who is mentally retarded. In some 

regards this barrier is based in reality; as staff 

working with older citizens are rarely trained to 

serve persons with disabilities such as mental 

retardation. As a consequence, they may 

overestimate the extent of problems they may 

face and not want to admit an older mentally 

retarded person into their program. 

Similarly, there are a number of barriers that are 

found in the mental retardation system; these 

include: Territoriality — This is when mental 

retardation agencies and providers believe that they 

must do all for their older clientele, because, "They 

are our responsibility." This barrier is evident when 

working with the aging network is dismissed 

outright due to a belief that the sole responsibility for 

providing services lies with the mental retardation 

agency. 

 Elitism — This is when the mental retardation 

agency contends that its services or those generally 

available within the mental retardation system are 

grossly superior to any available within the 

generic aging network. It is characterized by the 

attitude, "We can do it better" so why look to 

what's available in the aging network. 

 Denial — In some instances, agencies and providers 

have not yet come to grips with the special needs 

posed by the population of their older and elderly 

clientele, nor do they recognize the possible size 

and scope of the population. This barrier is 

evident, not because information is lacking, but 

because when contrary to reality, there is a denial 

of interest. The feeling expressed here is "It's 

not a special concern and we need not attend to 

it." 

POINTS OF TRANSITION AND THE OPTIONS 

AVAILABLE 

Transitions occur at various points in the 

lifespan. One point occurs in the late teens or early 

twenties, when the focus of services changes from 

school or education to independence building or 

work. Another occurs in late middle age or early 

old age, when the focus changes from work age to 

retirement activities. Such transitions among 

disabled persons can pose special challenges for 

service providers. For older adults with mental 

retardation, these transition problems can be found 

in a number of situations, including in later age 

instances of moving from home or an institution, 

"aging in place" in a community residential setting, 

and retiring from a vocational or developmental 

activity. Each of the transition situations is associated 

with special problems. What follows is an explication 

of the problems and some possible solutions. 

 Moving from Home 

In the general population, it is primarily the family 

that provides most "services" for elderly persons. 

Because of the efforts of family members, as many as 

60% of the extremely impaired elderly live outside of 

institutions and fully 80% of their service needs are 

met by an informal support network. In most cases, 

such supports are provided by a spouse or by adult 

daughters, daughters-in-law, or sons. Unlike most 

elderly 

152 
persons, older mentally retarded persons generally do 

not have children or a spouse on whom they can 

depend for support. In some cases, they live with 

very old parents who still provide their day-to-day 

supports; this creates a situation of a two-generation 

elderly family. In other instances, it is siblings or the 

children of siblings that provide care. A small 

proportion of those mentally retarded individuals 

who receive state-supported services continue to 

live with their families into old age, but the percentage of elderly mentally retarded persons who live 

with their families declines with advancing age. 

Movement from the home occurs usually in two 

circumstances, precipitous or planned. In the 

precipitous situations, the parent (or parents) may 

die or become hospitalized and no one is left to care 

for the retarded older person. Consequently, 

immediate emergency housing has to be found, 

oftentimes not in the most ideal setting. With the 

increase of home caring situations, this circumstance 

is becoming more frequent. In planned situations, the 

family has worked with an agency to identify 

acceptable options for housing; the older mentally 

retarded adult participates in the decision making 

process and goes on visits to the option chosen; 

and movement finally occurs upon prearrangement. 

In either of the two instances noted above, 

movement takes special planning by agencies so that 

both emergency placement options are available and 

a sufficient number of community living spaces are 

developed to anticipate the annual demand presented 

by the growing elderly population. To address such 

future planning needs of families, it would be 

helpful if the Administration on Developmental 

Disabilities would advise the state developmental 

disabilities councils that they should consider how 

their state is addressing the issue of its elderly 

mentally retarded/developmentally disabled 

population and establish statewide task groups to 

address barriers and problems found to be present 

that impede the community integration of elderly 

mentally retarded/developmentally disabled persons 

and families with permanency planning. 

 Moving from Institutions 

Some studies have indicated that a large 

proportion (sometimes up to 60%) of known older 

mentally retarded persons are institutionalized. In 

most instances the institutionalization took place 

when the individuals were young; not many older 

mentally retarded persons are now admitted to 

public institutions. These individuals may pose a 

special problem with regard to transitions. Their 

length of stay in the institution has often acculturated 

them to the facility and movement to another, less well 

known, setting can pose special problems. 

The problems faced by agencies in such 

situations, include addressing the willingness or 

unwillingness of the individual to move, finding 

the "right" residential and day programs in the 

community, and attempting to keep intact the 

friendship network that the individual has developed 

and upon which he/she relies. Moving intact groups 

of older persons to a common setting, such as a 

group home in the community, can do much to 

alleviate adjustment problems. Finding a day 

program that offers new and interesting 

experiences that are age- appropriate and typical of 

activities that other, non-disabled, seniors engage in 

can also do much to aid in the transition. 

"Senior friends" models that pair a nondisabled elderly volunteer with a mentally retarded 

person moving from home or from an institution 

have been shown td be very effective in aiding in 

transition situations and in affecting successful 

community integration. One such national program 

that could be used more frequently to provide such 

"senior friends" is the Senior Companion Program 

authorized by the National Domestic Volunteers 

Services Act. Steps should be taken to expand the 

applicability of this program to address this 

transition issue. 

 "Aging in Place" in Community 

Residential Settings 

"Aging in place" means growing older while 

remaining in the same residential setting. Generally 

this notion refers the problem of the growing 

frailty of older individuals already living in a 

community setting and the changing demands that 

growing frailty makes upon the staff and the 

environment. Many now older mentally retarded 

persons living in group homes and other similar 

settings began to reside in the settings as young or 

middle age adults. With the passage of time they 

have aged and their abilities and needs have 

changed. 

Some are experiencing medical complications or 

frailty that accompanies the normal aging process. 

Such frailty has been defined in PL 100-175 (the 

Older American's Act) as having a physical or mental 

disability that restricts the ability of an individual to 

perform normal daily tasks and which threatens the 

capacity of an individual to continue to live in the 

community setting. This growing frailty may 

necessitate admission to a long-term care setting; 

however, in many instances it can be accommodated 

by special building structure provisions that can be 

included that compensate for the older individuals 

difficulties in ambulation, sensitivity to 

153 
temperature changes, diminished vision and 

hearing, and impairments in fine motor dexterity. 

Further, pre-service and in-service training offered 

to staff in the facets of aging and special medical 

and nursing care can also help in re-defining the 

residence's program. 

Activities directed toward adapting the residence 

and re-training the staff rather than forcing 

movement are much more functional means to 

address the transition associated with "aging in 

place." Further, the revised definition of 

active treatment in the new ICF-MR regulations 

issued by HCFA should provide relief from 

regulatory constrictions. These changes would go 

far to ensure that a home remains a home. The 

former federal regulations governing the ICF-MR 

program (often a source of small group homes in the 

community), tended to inhibit, rather than facilitate 

this end. Countless instances of forced movement to 

accommodate the program rather than the residents 

were recorded. The Health Care Financing Administration (HCFA) has gone for to interpret these new 

regulations in favor of facilitating seniors programs 

(i.e., allow for aging and the special problems fared 

by older residents who "age in place." Now what is 

needed is for HCFA to ensure that operators and 

surveyors use this flexibility effectively. 

• Retirement 

Of all the transition issues related to aging, the 

most vexing is retirement. The problem most 

agencies face is that while it is easy to effect 

"retirement from" it is not that easy to effect 

"retirement to." Among non-disabled persons, the 

primary gain associated with work, a salary, is 

usually substituted by Social Security benefits or a 

pension. Further, most persons, when considering 

what to do upon leaving the workforce, also think in 

terms of what will replace work and the secondary 

gains associated with the work place, such as 

friendships, a place to go, and the personal identity 

that is defined by one's job. This notion of 

replacement leads to "retiring to." 

Often the social and personal changes 

associated with retirement can be traumatic 

when bridging does not occur as part of the 

transition process. The loss or change of friends 

when moving to a new program can pose a significant barrier. Selecting among options available to seniors in the community can help to 

plan the "retirement to." Some other strategies 

that could mitigate problems associated with retirement for persons with mental retardation 

include the use of pre-retirement counseling, 

partial retirement (where the individual slowly 

transitions from work to retirement), and increasing socialization through the use of nondisabled "senior friends" and involvement in 

socialization programs. A "senior friend" can help 

the retarded person acclimate to new settings that 

offer retirement activities as well as serve as a 

bridge to the friends he or she may have left in the 

work setting. 

Most disabled individuals do not receive 

earned social security benefits or pensions to use

as income in retirement. For those mentally 

retarded individuals attending sheltered workshops 

or earning money in some type of day program, 

the lack of money upon retirement can become a 

major problem. Many older mentally retarded 

workers are reluctant to retire when they are faced 

with the loss of their cherished income. This results 

in a dilemma: when faced with a desire to stop 

working and relax but lose income, or continue to 

work and lose the freedom that may come from 

retirement, most elderly workers chose to continue 

to work. 

There is another side to this problem. Involvement in senior group activities that are 

offered at senior centers, such outings or a trip, 

may include a nominal fee. Further, even 

participating in the congregate meals program 

involves some expense since sites ask for a donation 

of on the average of $1.50 per meal. An older person 

should have the dignity associated with "paying your 

own way" since many senior activities are peer 

oriented. This consideration of maintaining the older 

individuals' dignity and self-respect when they move 

from the work setting to a seniors program is very 

important. A mechanism that permits the receipt of a 

pension or old age benefits would go far to aid in 

the transition to retirement. Although the issue of 

introducing social security deductions in a 

workshop is fraught with complexities, it is worth 

exploring given the growing numbers of older 

mentally retarded persons living into old age and the 

need for some type of pension income. 

Lastly, certainly one of the avenues of retirement 

should be the blending of services available within 

the mental retardation system with those available to 

other seniors in the local community. There is a 

range of services available such as activities in senior 

centers, congregate meals sites, and adult day care. 

Any of these options could be used for individuals 

who are relatively capable. For individuals who are 

severely mentally impaired programs need to be 

provided in the mental retardation system. The aging 

network does not have the capacity to serve very 

impaired individuals, regardless of handicap. 

Mentally retarded senior citizens could and should 

partake of the local senior citizens center's programs. 

154 
This, however, does not come without its 

problems. Because integration of disabled seniors 

into the local seniors programs could be greeted with 

resistance, referrals to senior programs should be 

based upon the age of the resident, not their 

diagnosis or status in the mental retardation system. 

Non-disabled seniors may not have ever encountered a 

disabled person before, especially since when they 

were growing up it was the practice to institutionalize 

mentally retarded individuals. Both the expectations 

derived from continual use of generic aging network 

services and education campaigns with staff of senior 

programs should aid in eliminating such bias. 

Further, to address such barriers in attitudes and to 

aid in providing special transition services associated 

with movement, "aging in place," and retirement, the 

Administration on Developmental Disabilities and the 

Administration on Aging, jointly, should commission 

the development of a series of training and education 

packages on aging and life-long disabilities that address 

the issues noted above. These training materials should 

be made broadly available to both aging and mental 

retardation/developmental disabilities agencies. 

RECOMMENDATIONS 

1. To address problems associated with moving from 

home or institutional settings and the development 

of appropriate community services: 

The Administration on Developmental Disabilities 

should advise the state developmental disabilities 

councils to address the issue of the state's elderly 

mentally retarded/developmentally disabled 

population and establish statewide task groups to 

address barriers and problems found to be present 

that impede the community integration of 

elderly mentally retarded/developmentally disabled 

persons and family planning for long term care. 

2. To aid in more effectively using non-disabled 

seniors as volunteers as "senior friends": 

The National Domestic Volunteers Services Act 

should be amended to include expanded provisions 

for the use of Senior Companions to specifically 

address the transition problems faced by older 

persons with mental retardation. 

3. To ensure that older persons with mental retardation 

are not capriciously forced to leave their "homes": 

The Health Care Financing Administration 

(HCFA) should ensure that its new regulations 

governing the ICF-MR program are flexibly 

applied to allow for aging and the special 

problems faced by residents who "age in place." 

4. To ensure that a lack of information and training 

is not a barrier to the successful integration of older 

persons with mental retardation in the aging 

network and that mental retardation providers can 

realistically adapt their programs to serve an 

aging clientele: 

The Administration on Developmental Disabilities 

and the Administration on Aging, jointly, should 

commission the development of a series of 

training and education packages on aging and 

life-long disabilities and that these training 

materials should be made broadly available to both 

aging and mental retardation/developmental 

disabilities agencies. 

5. To place in the public domain concerns over the 

aging of persons with lifelong disability: The 

Administration on Aging should ensure that the 

interests and needs of older persons with 

lifelong disability are included on the agenda for 

the 1991 White House Conference on Aging. 

155
The Supplemental Security Income (SSI) and 

Social Security Programs for People with 

Mental Retardation 

by Kenneth McGill 

Acting Director, External Affairs 

Office of Government Affairs 

DHHS — Social Security Administration 

Baltimore, Maryland 

BACKGROUND 

Supplemental Security Income (SSI) is a 

Federal program that provides monthly payments 

to aged, blind, and disabled people who have little 

or no resources and income. 

The Social Security Administration administers 

the SSI program. It determines eligibility of 

claimants, makes the basic payments to recipients, 

and maintains a master record of recipients. 

States are required to supplement the Federal 

payments to people who received a higher amount 

under certain State assistance programs that existed 

before 1974. They have the option to supplement 

the Federal payments to all recipients. Most States 

also provide Medicaid, food stamps, and various 

social and rehabilitation services. 

Even though the Social Security Administration 

runs the program, SSI is not the same as Social 

Security. 

SSI is financed from general funds of the U.S. 

Treasury — personal income taxes, corporation taxes, 

and other taxes. Social Security is funded through the 

Social Security taxes paid by workers, employers, 

and self-employed people. The two programs also 

differ in other areas, such as the conditions of 

eligibility and the method of figuring payments. 

BASIC ELIGIBILITY CONDITIONS 

To be eligible for SSI, a person must be 65 or 

older or disabled or blind, have limited resources 

and income, and meet certain other requirements. 

Disabled or blind children, as well as adults, may 

be eligible. It makes no differences how young a 

person is. 

A person 18 or older is considered disabled if a 

physical or mental impairment prevents him or her 

from doing any substantial gainful work and is 

expected to last for at least 12 months or to result 

in death. 

A child under 18 may be found disabled if he 

or she has a physical or mental impairment that is 

comparable in severity to one that would prevent an 

adult from working and is expected to last at least 

12 months or result in death. 

Disabled and blind claimants are referred to 

appropriate agencies for rehabilitation services. 

In 1988, the resource limits are $1,900 for a 

single person and $2,850 for a couple. Not all 

resources are counted in determining if a claimant 

meets the resource limit. Items which do not count 

in most cases include: a home, personal effects, 

household goods, an automobile, life insurance 

policies, burial funds and plots. 

The income limits in 1988 for a Federal 

payment are $354 a month for a single person and 

$532 for a couple. The income limits may be 

higher if a State supplemental payment is involved. 

Not all income is counted in determining if a 

claimant meets the income limit. A number of 

different exclusions are allowed for earned income 

(wages) and unearned income (pensions, interest, 

cash benefits). Parental income is partially counted 

for a child under age 18 who lives at home. An 

adult child's payment may be reduced if he lives in 

the parent's household, but the parent's income is 

not counted. 

MEDICAID 

In most States, SSI recipients are eligible for 

Medicaid, which can pay health care expenses. 

In some cases, children may be eligible for 

SSI and Medicaid while institutionalized but be 

ineligible when living at home, either because 

of their parents' income and resources or be156 
cause they receive support and maintenance in kind. 

At the State's option, children 18 or younger who 

live at home may retain Medicaid eligibility while 

receiving home care at less cost to the 

Government. 

For more information about Medicaid, contact 

the local medical assistance office. 

WORK INCENTIVES

Recent legislation modifies and makes permanent certain work incentive provisions — 

Section 1619 of the Social Security Act — which 

were due to expire on June 30, 1987. These rules 

provide special cash benefits and Medicaid 

coverage to SSI recipients who work despite severe 

impairments. The new provisions became 

effective on July 1. 

Begun as a pilot 3-year demonstration 

project in 1981, and since extended, the 

program has two parts: 

Section 1619(a) allows disabled recipients who 

work to keep receiving SSI cash benefits until their 

earnings reduce their SSI payments to zero. 

Section 1619(b) continues Medicaid protection for disabled people whose earnings are too 

high for SSI payments as long as they remain 

medically impaired, need Medicaid in order to 

work, and cannot afford to replace the Medicaid 

benefits. SSI recipients can be eligible for Section 

1619 benefits in any month after the first month they 

join the SSI rolls. 

The new provisions require all States to 

continue Medicaid coverage to recipients who were 

receiving Medicaid coverage in the month before 

qualifying for Section 1619 benefits. This 

coverage was not available in all States under the old 

law. 

Under the old law, recipients who had been 

receiving Section 1619 benefits often had to reapply 

for regular SSI benefits if their work attempts 

failed. Recognizing that severely impaired recipients 

who make work attempts may not be able to show 

steady improvement, the new provisions allow 

relatively free movement between regular SSI 

benefits and 1619 eligibility. Even people who 

have worked their way off the SSI rolls can go 

back to cash benefits and/or Medicaid, if their 

income drops to eligibility levels within 12 

consecutive months. 

The new legislation is based on the demonstrated potential of the work incentive rules for 

helping recipients return to work and leave the 

payment rolls. A small but growing number of 

people have participated in the program since it 

started in 1981 as a demonstration project. The 

project results indicated that a significant number of 

participants began working or increased their 

earnings only because they know they would 

continue to receive Medicaid and would also 

receive SSI if their work effort failed. 

PLANS FOR ACHIEVING SELF-SUPPORT 

Under a plan for achieving self-support, a 

disabled person can set aside income and/or resources 

for a work goal such as vocational training, 

education, or starting a business. A person can even set 

aside funds to purchase work- related equipment. 

Income and resources that are set aside are 

excluded under the SSI income and resources tests. 

The person must have a feasible work goal and a 

specific savings or spending plan. He also must 

provide for a clearly identifiable accounting of the 

funds that are set aside. The person must then follow 

the plan but can negotiate revisions as needed. 

A vocational counselor, social worker, 

employer, Social Security representative, or anyone 

else may help a person develop his or her plan for 

achieving self-support. Social Security will evaluate 

the plan and determine its acceptability. 

It is important to remember that, as earnings go 

up, a person who doesn't need a plan for achieving 

self-support may need one next month to remain 

eligible or to increase his or her SSI payment 

amount. 

157 
Quality Assurance Panel

MODERATOR: VALERIE 1. BRADLEY 

PANELISTS: LINDA TOMS BARKER 

 RONALD W. CONLEY, PH.D. 

 MARY C. CERRETO, PH.D. 

 C. KAYE PEARCE 

158 
Assuring and Enhancing Community Integration of 

Persons with Developmental Disabilities Through 

Quality Assurance Mechanisms 

by Valerie J. Bradley 

President, 

Human Services Research Institute Boston, Massachusetts 

What does quality assurance have to do with 

community integration and the continued reform of 

services to people with mental retardation and other 

developmental disabilities? 

1. Quality assurance systems spell out our expectations 

for services provision. The norms of community 

integration and community presence, therefore, 

must be reflected in our standards and evaluation 

criteria. 

2. Community integration assumes that individuals 

with disabilities will lead more normal and 

participatory lives. Quality assurance systems should 

provide the feedback necessary to determine 

whether these promises are in fact kept. 

3. Because community integration for persons with 

disabilities assumes that lay persons as well as 

professionals have important roles to play, quality 

assurance systems must reflect a range of 

contributions both insofar as setting standards and 

monitoring services. 

4. Because community integration stresses client 

choice, quality assurance systems should include the 

perspective of the individual receiving services as a 

critical element. 

Today, we have an impressive panel made of 

people who can reflect on quality assurance issues from 

very personal and direct experience. Though quality 

assurance has become somewhat trendy in the last 

several years, these individuals have been involved in 

the design of oversight mechanisms and evaluation 

systems for several years. 

In addition to the individuals on the panel, I hope 

that others in the audience — especially family members 

and self-advocates will also contribute to the discussion. 

As I am sure you are all aware from the agenda, 

our mission is to identify state-of-the- art techniques 

and to make policy recommendations regarding the 

multiple relationships among federal, state, and local 

governments, families and consumers and private 

providers that can be forged to facilitate community 

integration. 

With respect to this panel, our task is to identify 

the multiple strategies that can be employed at all levels 

of the system to ensure the well-being of people with 

disabilities and their maximal integration into the 

life of the community. 

Before we proceed, I would like to provide a 

general context for the discussion by covering the 

following areas: 

 What is quality in this field? 

 What is wrong with the way that we currently 

measure quality? 

 What is the role of a quality assurance 

system? 

 What are the components or aspects of quality 

assurance? 

 What are some innovative techniques for enhancing 

and ensuring quality? 

 Who can carry out quality assurance 

activities? 

WHAT IS QUALITY? 

The term "quality" is increasingly used not only in 

human services, but also in business. Advertisements 

for automobiles in particular stress the virtues of 

their products in statements such a "Quality is Job 1" 

and others claim the "the quality goes in before the 

label goes on." 

159 
"Too bad we don't have a high hurdles event in this track meet!" 

"There's got to be a better way!" 

160 
These concerns are the result of a desire for 

standards that yield a product whose performance is 

reliable and predictable. These are clearly criteria 

that should be part of the expectations for services 

to persons with mental retardation. The added 

dimension in human services is the desire to find 

out whether the service that is delivered has the 

intended effect. In other words, quality is the 

promise that is made to the client and quality 

assurance is necessary to ensure that the promise is 

kept. 

To ensure that the promise of community 

integration — a full life in the mainstream of the world 

of work and leisure — is kept, quality assurance 

systems must be available that both monitor the 

fulfillment of the integration goal and that assist in 

facilitating the implementation of the concept. 

Notions like community integration are not selfimplementing — they need to be nurtured and 

supported. The field of mental retardation and 

developmental disabilities is fairly good at housing 

and training people with mental retardation but the 

skills needed to encourage integration are not 

necessarily taught in professional schools. 

Our notions of quality are dependent on a 

variety of inputs including ideology (the values that 

govern the system), empirical knowledge (research 

regarding best practices), and professional training. 

These viewpoints all become relevant in the design 

of standards. Turning conceptions of quality into 

standards is a complex process in the human services 

field. The following figure depicts the differences 

between inputs into health standards versus standards 

in the human services. 

In the health field, there is a linear relationship 

between developments in practice and research 

and the evolution of standards, and consequently to 

outcome expectations and the application of 

standards in practice. In the human services field — 

and particularly the developmental disabilities field 

— multiple entities and perspectives contribute to 

notions of quality and to the setting of standards. The 

application of these standards is also complicated by 

the diversity of the provider community and the 

approaches applied to service intervention. The 

recognition that notions of quality are multifaceted leads us to the conclusion that quality 

assurance systems must also employ multiple 

perspectives in assessing and applying quality 

standards. 

CRITIQUE OF QUALITY 

ASSURANCE APPROACHES 

There are several problems with the way in 

which quality assurance is currently carried out: 

Minimum Standards 

The following drawing illustrates the dilemma 

of minimum standards. The standards used to judge 

services for persons with developmental disabilities 

tend to perpetuate mediocrity because they 

represent minimal compliance thresholds. Clearly, 

there are basic requirements that all services should 

meet and that are unlikely to change over time 

including minimum health and safety standards. Standards, however, should not mark only minimal 

achievement, but should contribute to the dynamic 

character of a system by constantly exhorting 

providers to higher levels of attainment. The 

provider in the drawing is neither being challenged 

by the event she is in nor can she expect any 

rewards for her exemplary performance. 

Burden of Documentation 

The quality regulator in the next drawing is in 

the midst of a paper blizzard typifying the problem of 

paper compliance. As services have proliferated and 

become more decentralized, quality assurance has 

become a more time consuming and difficult task. 

As a result, many public agencies have increasingly 

used paper "proxies" for quality. As the task has 

grown, it has become easier to monitor those things 

that can be counted or observed easily. Staff are inadequate in many agencies and their ability to spend 

time getting to know programs first hand has 

diminished. 

Reactive vs. Positive 

Further, traditional quality assurance systems use 

techniques that are more reactive than positive. 

Reactive mechanisms investigate service quality 

problems post facto and are generally negative and 

targeted to past practice. Positive monitoring 

mechanisms assist service providers in order to 

improve practice, and to head off potential 

problems before they develop. 

Clearly, ferreting out abuses in services delivery 

is an important activity in any quality assurance 

system. The problem arises when the system becomes 

dominated by negative oversight and sanctions. 

When this happens, providers begin to see the 

public monitors as adversaries concerned only with 

finding fault. As a result, the mutual support and 

cooperation necessary for service quality is 

undermined. 

Implications 

The result of these structural problems in quality 

assurance systems is that the communication of policy or 

a vision of what the service system should be is blocked 

both by the adversariness of the process and by its 

narrow focus. The solution is a better balance between 

161 
the aims of quality regulations (e.g., auditing, 

licensing, etc.), and quality enhancement (e.g., 

technical assistance, self-assessment, etc.). 

Role of Quality Assurance 

There are six objectives that characterize the 

role of quality assurance: 

 To assure that providers of human services have 

the capability to provide an acceptable level of 

service; 

To assure that client services are provided 

consistent with accepted beliefs about what 

constitutes good practice; 

 To assure that a commitment of resources 

produces a reasonable level of service; 

 To assure that the services that are provided have 

the intended effect; 

 To assure that the limited supply of services is 

provided to clients most in need; 

 To assure that the legal and human rights are 

protected; 

Contemporary quality assurance systems are 

fairly effective in meeting those objectives having to 

do with capacity and practice — usually through 

licensing and accreditation. They are less effective in 

assessing cost effectiveness and service outcomes. 

The protection of legal and human rights has 

improved substantially over the past decade, but 

improvements are still needed. 

ASPECTS OF SERVICE QUALITY 

There are many facets of the delivery of services 

that must be taken into account when designing a 

quality assurance system. 

 Components of a Quality Assurance System 

— Those elements that comprise the quality 

assurance process including standard- setting, 

monitoring, and control/enhancement. 

 Standard-setting and measurement — 

The development of programmatic norms or 

benchmarks for the determination of program 

performance. Standards must be clear and easily 

communicated, flexible enough to allow for 

innovation, and uniformly and consistently 

applied across settings. 

 Monitoring — The process of assessing the 

performance of service providers using predetermined standards. Monitoring must be cost 

effective, reliable, and valid. 

 Control/enhancement — The process of 

responding to information generated through 

monitoring mechanisms. Such response can either 

be regulatory (e.g., development of a plan of 

correction, withdrawal of funds or license, etc.), or 

enhancing (e.g, provision of technical assistance). 

Control and enhancement responses must be 

creditable and constructive. 

 Service Dimensions — Those aspects of 

provider performance that are the targets of quality 

assurance including: (the following drawing 

graphically depicts the service dimensions) 

 Outcomes reflect what happens to the client as a 

outgrowth of the service. Outcomes correspond to 

the client-related goals of the service and measure 

the extent to which the service has been effective 

in meeting its goals. 

 Inputs (or "structural" measurements) refer to the 

descriptive characteristics of facilities or 

providers. Included in this category of criteria are 

client characteristics, staff qualifications, staffclient ratios, and the condition of physical 

facilities. 

 Process refers to the interaction between the 

client and the organization providing the services 

and to the administrative and support activities 

integral of the delivery of the service. Process 

criteria refer to the quality of the interaction 

between client and provider, and to how well the 

client moves through the service delivery system. 

 Outputs refer to the "products" of the service 

process including number of clients, number of 

staff trained, number of IHPs completed, and so 

forth. 

INNOVATIVE QUALITY ASSURANCE 

TECHNIQUES 

There are numerous techniques for ensuring the 

quality of mental retardation services that can 

improve the responsiveness of quality assurance 

systems to service planners and providers alike, and 

that can extend quality assurance capabilities at a 

moderate cost in most instances. 

Pre-Screening and Self-Assessment 

Pre-screening coupled with self-assessment is a 

quality enhancement method by which an organization 

voluntarily monitors its own operation using a predesigned set of standards. 

These methods are usually spelled out in manuals and 

are composed of checklists that organizations can use 

to assess their own operations. Self-assessment is a 

non-intrusive and non-threatening way for agencies to 

assemble and organize information about strengths 

and weaknesses and to make comparisons with predetermined norms. 

Outcome Monitoring 

As noted earlier, quality assurance systems 

are not very good at measuring whether services have the intended effect. There are some 

162 
Quality Assurance in Health 

Quality Assurance in Human Services 

163 
models of outcome monitoring systems in our field 

including the work of Temple University 

Developmental Disabilities Center in designing a 

continuing outcome monitoring system for the 

Commonwealth of Pennsylvania. Once a year, the 

individual progress of persons receiving services in 

assessed and is compared to previous norms. If an 

individual's skills have declined below a particular 

level or if other things about the individual's 

environment are noted (absence of an IHP on the 

living unit), then the state or county makes a 

follow-up visit to determine if there is a problem. 

Community integration issues can be built into 

outcome monitoring schemes so that it is possible to 

determine whether individuals are remaining 

isolated in the community or whether they are 

truly leading active and varied lives. 

Case Tracking and Exception Reporting 

This technique relies on regularly reported data 

on individuals receiving service which in turn 

permits agencies to follow clients through various 

programs. Exception reporting uses case tracking to 

identify deviations in individual cases based on 

predetermined norms. 

Consumer Satisfaction 

The assessment of consumer satisfaction is 

important not only because it provides another source 

of information about service quality but because it is a 

recognition of the value of client choice and 

judgement. It is a particularly important method of 

assessing the extent of community integration. 

Observation 

Observation involves physically looking at the 

service delivery process. Observation is a versatile 

method that can be applied in a variety of 

residential and work settings. It is one of the only 

ways in which to assess the actual service process. It 

is, however, a potentially intrusive method, 

especially in the residential setting. 

Performance Contracting 

Performance contracting is in many ways a 

preferable quality assurance technique since a 

range of individually-tailored criteria can be built 

into the contract. Sanctions for non-performance 

may include some payment penalties and/or may 

provide for some immediate corrective action. 

Accreditation 

Accreditation organizations in mental 

retardation and developmental disabilities by and large 

include all of the relevant vantage points (with the 

exception of actual consumers in some instances) 

on standard setting panels. Many states have 

"deemed" private accreditation standards as 

equivalent to state standards and have therefore 

eliminated the necessity of developing a concurrent 

set of standards. Other states have allowed private 

accreditation as an alternative to state certification. 

The use of private accreditation mechanisms by 

public agencies is an efficient way of expanding 

quality assurance resources. The more that 

accreditation is used as a public requirement, 

however, the more the field should be concerned 

about the possible compromise of such standards 

over time and the gravitation of such standards to 

the lowest common denominator. 

Training and Technical Assistance 

Though not conventionally regarded as quality 

assurance mechanisms, training and technical 

assistance should be integral aspects of any 

oversight system. Merely uncovering problems in 

the service system is not sufficient, public agencies 

need to have the capability to respond and enhance 

performance. 

QUALITY ASSURANCE ACTORS 

As noted previously, quality assurance is a 

multifaceted activity that should involve the 

perspectives of a variety of actors in the system 

and should involve as many perspectives as 

possible. 

Citizens and Volunteers 

Citizens can be used to conduct a variety of 

quality assurance functions including reviewing the 

results of an evaluation or quality assurance report, 

collaborating with professionals to carry out 

evaluations and carrying out independent reviews of 

a mental retardation program or service system. 

Citizens and volunteers can bring an important point 

of view to quality assurance, they can enhance an 

agency's connection with the community, and they 

provide an alternative source of manpower for 

quality monitoring. 

Peers 

The use of peers to assess the quality of services 

involves an assessment of the professional practices of 

individuals providing services within the agency by 

professionals external to the agency. Peer review 

can be used for both quality regulation and quality 

enhancement. It is a reasonably inexpensive 

mechanism but is sometimes criticized because of its 

over-reliance on professionalism and the possibility 

of "cronyism." 

Private Evaluation Services 

Another option is the use of private evaluation 

services. Private evaluators can serve as 

interviewers or trained observers, as designers 

164 
of quality assurance instruments, creators of automated 

client information systems, and developers of data 

analysis procedures that may be beyond the technical 

competence of small providers or over-taxed public 

oversight agencies. 

Individuals with Disabilities and Families 

Like citizens and volunteers, consumers and their 

families can extend the capabilities of quality 

assurance agencies. Using individuals with disabilities 

and families has several advantages: they have a 

unique point of view, they tend to focus more on the 

service environment than on abstract programmatic 

techniques, they are likely to be sensitive to issues 

of client rights and abuse, and they may be more 

successful at soliciting relevant information from other 

clients and/or family members. Examples of family 

monitoring can be found in the Macomb Oakland 

program as well as in the mental retardation program 

in Ohio. Self advocate monitoring is also growing 

around the country. One People First program in 

California did its own evaluation of the service system 

including interviews with other individuals with 

disabilities. 

Advocacy Groups 

Typically, conventional quality assurance agents 

cannot guarantee that the conduct of a program on a 

day-to-day basis will enhance the well-being of 

individual clients and protect their rights while 

they are receiving services. Because of their unique 

relationship to their clients, many advocates have a 

better chance of soliciting quality-related information 

from service recipients. There are a number of ways 

that advocates can contribute to quality assurance: 

they can seek enforcement of existing quality 

assurance regulations, they can provide a forum for 

complaints, they can conduct independent 

assessments, and they can serve as spokespersons for 

individual complaints. 

RECOMMENDATIONS 

 Standards at all levels of the service system need 

to be continually revised and updated to reflect 

changes in ideology and the state- of-the-art. 

 The federal government needs to support research 

to document the best ways to assess the outcomes 

of services. 

 States and localities should supply the resources 

necessary to guarantee the inclusion of families and 

individuals with disabilities at all stages of the 

quality assurance process. 

 Federal, state and local governments should make 

resources available for a range of training and 

technical assistance activities. 

 The quality assurance provisions of the current 

Chaffe legislation should be supported. 

 Federal funds should be made available to 

support the dissemination of information on best 

practice in the area of community integration. 

165 
Assuring the Quality of Community Integration 

Through a Focus on Outcomes: Consumer, 

Community, and Federal Government Roles 

by Linda Toms Barker and Frederick Collignon 

(Presented by Linda Toms Barker) 

Berkeley Planning Associates 

Berkeley, California 

The obvious place to start in any discussion about 

quality assurance is with examining our definition of 

"quality". Then we'll look at the importance of 

focusing on outcomes in order to assure program 

quality. We'll briefly explore some of the work 

being done to identify quality outcomes in the area 

of community integration and where there is a need 

to improve ways to measure outcomes. Finally we'll 

examine some issues about the process of quality 

assurance and the possible roles of different actors 

in the system to put it all together into something that 

works. 

WHAT IS "QUALITY"? 

"Quality" is a concept that is based on ideology — it's something that's very personal and 

often means different things for different people. One 

of the potential difficulties that evaluators encounter 

in measuring quality is a natural tendency to place our 

own values on the outcomes that we think other 

people ought to achieve. It's very important in 

developing systems of standards and mechanisms for 

monitoring quality, to closely examine the values and 

range of perspectives that need to be reflected and 

not only those of the practitioner or evaluator 

assessing quality. 

Quality is a concept that is often used in the context 

of reinforcing the current way of doing things. One 

might consider something to be of good quality 

when it reflects our understanding of the way 

things are commonly being done. If it's different, 

especially if it's significantly different, then we 

might call it "innovative", but still question its 

quality. So one of the first things we need to look at 

as we examine our notions about quality, is whether 

or not we want to reinforce the current ways of doing 

things or whether we want to look for new ways of 

doing things. 

Quality is also a concept that can be used to 

help bring about or reinforce what we consider to be 

"models" of the way things ought to be — to 

move the system toward what is believed to work 

best. This presupposes that we know what the 

model ought to be and the direction in which changes 

should be made. However, if we focus on the way 

things are currently being done, or we focus on 

some notion of where we think they ought to go in the 

future, we can get ourselves locked into certain 

ways of thinking about things. 

We may want to step back from all of that and 

start to think about quality in a much broader sense, 

as a concept that focuses on "the way we get the 

best results." Then when some new idea comes 

along, that's neither our current way of doing things, 

nor the model we've chosen as the best direction 

to move into, we still have criteria we can use to 

judge the quality of the new idea. 

THE CASE FOR FOCUSING ON OUTCOMES 

So what are the best criteria to use to judge 

quality? It turns out that most quality assurance systems 

have tended to focus on things like prescribing the 

kinds of staff roles and qualifications that are most 

appropriate, or the kinds of services that should be 

delivered and the timelines, the amount or intensity of 

those kinds of services, the characteristics of the 

physical facilities in which those services should be 

provided, or even detailed sequences of activities staff 

should carry out in delivering services. These kinds of 

standards focus on "inputs" and "processes" as the keys 

to quality services. Certainly, there is a role for under166 
standing and valuing certain kinds of processes and 

inputs, and it is not our intent to down play those. 

However, it is important to emphasize the need for 

understanding what the intended outcomes are to 

be. If you know where you're ultimately headed, it's 

much easier for you to know if you're going in the 

right direction, and to assess some new process or input in light of how it contributes to a high quality 

program. 

Consider the experience of a trainer at a 

computer training program in Georgia who recently 

went to his director and insisted that the records 

showed the wrong diagnosis on one of his trainees. 

"You told me he has Down Syndrome but he's doing 

elementary computer programming and other things 

that people with Down syndrome can't do, so the 

diagnosis must be wrong." In fact, the trainee does 

have Down Syndrome and he really can do some 

very simple computer programming. Here was a 

new "input", a type of client not generally included in 

this training program. He wasn't the kind of person 

thought to be capable of these activities. But the 

outcome is that this person is learning skills that will 

enhance his employability and potential for 

community integration. Staying focused on the 

outcome we can say that this is a good program for 

this individual. 

The major problem with quality assurance 

systems focusing on detailed prescriptions and 

monitoring of processes and inputs, is that we often 

don't know whether the processes and inputs will in 

fact lead to the kinds of outcomes we desire. We 

think they will, based on our theories and beliefs 

about good programs but we may not have had 

enough experience over time to be sure. Bradley et 

al., observed that 

"The major drawback to using "inputs" as measures of 

quality is that they measure only the capability to 

perform and not actual performance" (1984). Other 

limitations of focusing exclusively on inputs and 

processes include: 

 These systems can inhibit program operators from 

responding to the unique or special needs of 

individual clients who are unlike the "typical 

client," through their overspecification of what a 

program must do and the processes to be used in 

carrying out these activities. 

 These systems can inhibit programs from 

responding effectively to the different requirements 

that may arise at different localities or at different 

times. Given variations in the resources and 

environments of different communities, the right 

mix of inputs in a program may appropriately need 

to vary. Indeed in some communities, ideally 

desired facilities or staff with certain backgrounds 

may not exist. To develop such facilities or move 

such staff to the community may be prohibitively 

expensive or otherwise infeasible. To insist on them 

may be to condemn the community to no program 

at all, or to requiring clients to relocate or travel 

great distances. This could result in less desirable 

outcomes than if the community adapted its 

facilities and staffing patterns to suit its local needs 

and resources. 

 Because standards will favor some types of staff 

hiring and program designs over others, the 

process of erecting the standards risks capture by 

interest groups wanting to protect their selfinterests professionally or in the service market. 

While the standard- setting process would be 

carried out in the name of what's best for the 

client, it can become a political exercise to create 

job protection for certain types of professionals or 

market protection for certain types of providers. 

 Such a system of standards if quite extensive could 

be very expensive for the quality assurance 

component to monitor. Yet poor monitoring could 

lead to disdain by providers and communities 

unconvinced of the appropriateness of the standards 

or unwilling to conform, and ultimately erode the 

credibility of the quality assurance component 

altogether. 

 And finally, as we focus on community integration, 

it is important to recognize that the movement away 

from institutional programs means a movement away 

from standardized service delivery approaches and a 

single centralized quality assurance system. The broad 

diversity of services, providers and service settings 

involved, may simply not lend themselves to quality 

assurance approaches that focus on inputs and 

processes. 

An alternative approach to defining quality, which is 

usually superior to "inputs" and "process" definitions, 

is to foci's on the "outcomes" actually desired for 

clients. Under this approach programs are held 

accountable for achieving results for clients, and a 

program of "high quality" is one which achieves desired 

results with consistency. The use of such outcome 

measures shifts the process of quality assurance by 

permitting different communities and providers more 

room for experimentation with different modes and 

mixes of service as they try to find out what works best, 

and as they respond to differing client needs and local 

community situations. 

Quality assurance systems driven principally by a focus 

on client outcomes can, of course, also include standards 

relating to inputs and program processes. These latter standards 

would be included where there is clear evi167 
dence that those inputs and processes are 

consistently, strongly, and perhaps uniquely 

associated with good client outcomes. Also, it may 

be judged that certain types of client experiences are 

important outcomes in their own right — e.g. access 

to certain kinds of services, timeliness of service 

delivery, the opportunity for client participation in 

service planning, the right of the client to privacy 

or confidentiality, or simply sensitive treatment 

that respects their dignity. In this situation, process 

standards become appropriate because the 

experience and protections they guarantee are 

outcomes desired for clients. 

Finally, there remains a place in a quality assurance 

process for guidelines and suggestions for "best 

practice" models as currently identified by 

individuals knowledgeable about programs around 

the country. The key is that such models be put 

forward as recommendations, and not as 

requirements or definitions of "program quality." 

Today's "best practice", especially in the emerging 

field of community integration, may become 

outmoded quickly. Moreover, there will usually 

not merely be a single model of "best practice", but 

several alternative models. Rather than elaborate 

highly complex sets of standards and requirements reifying such contemporary "best practice", the 

quality assurance component would do far better 

to identify, describe, and disseminate information 

about "best practices" to communities, and rely on 

the sincere concern of those in the local 

communities to find the best way of serving clients 

(and on the focus on outcome- focused performance 

measures) to prompt the communities to emulate 

such practice. 

WHICH COMMUNITY INTEGRATION OUTCOMES ARE MOST IMPORTANT? 

A review of the literature shows that there are 

almost as many different ways of looking 

at community integration outcomes and different 

values placed on different kinds of outcomes as 

there are people writing about them. There certainly 

is not consensus. While many consumer advocates 

and service providers have been concerned about 

community integration for a long time, relative to 

the whole history of services for individuals with 

developmental disabilities, the formal assessment 

of outcomes in this field is still very much in its 

infancy. Thus, concepts about what to measure are 

still very varied. 

According to Janell Haney, for example, 

much of the research to date on the outcomes of 

community integration efforts focuses on the issue of 

adaptive behavior. We know when we've had a 

good outcome with someone with a severe 

disability when their adaptive behavior is improved 

including in areas such as "... independent 

functioning skills, physical development, 

economic activity, language development, number 

and time skills, prevocational activity, selfdirection, responsibility, socialization, and 

trustworthiness. Maladaptive behavior would 

include aggressiveness and rebelliousness." A good 

quality program would be one that offered a 

combination of services and supports that resulted 

in increased adaptive behaviors and decreased maladaptive behaviors. (Haney, 1988.) 

James Martin suggests that acquisition of 

specific community and domestic daily living 

skills are critical to the success or failure of 

community integration. Since research has shown 

that individuals who don't have various kinds of 

community and domestic skills are the ones that tend 

to fail, a quality program might be one that 

provides training in specific skill areas including at 

a minimum the following (Martin, 1988): 

Community Skills 

Mobility — pedestrian skills, bus riding, car 

driving 

Money Management — equivalency, counting, 

computation, banking, purchasing in 

restaurants, grocery stores, vending 

machines 

Telephoning Skills — phone dialing, emergency 

calls, everyday use 

Domestic Skills 

Menu Planning 

Meal Preparation 

Housekeeping 

Clothing Care — selecting clothing, sewing, 

laundry 

Home Safety 

While these skill areas represent the kind of 

listing that can be useful in developing a 

curriculum, they are less useful in defining the quality 

of a program. After all, the outcome is not so much 

whether one knows how to sew (not a skill that 

many of us have time to exercise in our daily 

lives, even if we do know how), as it is whether 

one is appropriately dressed in clothes that are clean 

and in good repair and appropriate to the given 

occasion. Also, it's extremely difficult to be sure 

that such a listing truly represents the most 

important skill areas. For example, what about 

teaching how to purchase durable clothing less likely 

to need repair or how and when to take clothes to the 

dry cleaners? 

Richard Schutz stresses the importance of 

employment as a community integration outcome 

(Schutz, 1988). He cites Studs Turkel who has 

pointed out that besides monetary rewards, work 

offers a person less tangible rewards such 

168 
as opportunities to interact with others, develop 

self-worth, and contribute to society (Turkel, 

1972), and C.F. Obermann who has claimed that 

from a societal perspective, work has become the 

measure of both worth and social status, with 

unemployed individuals viewed as less socially 

acceptable (Obermann, 1965). 

Many providers may view employment as a 

totally separate issue from community integration. 

There may be a tendency to think of community 

integration as a program or service approach rather 

than as a set of outcomes, as being a residential and 

day treatment concern, with employment being 

some other agency's problem. But in our society, 

community participation includes work. 

Employment and community living are all part of 

the same big picture as we chart the success of our 

community integration efforts. 

Laird Heal reaffirms the importance of focusing on outcomes and stresses the need for 

empirical research to establish which kinds of 

residential changes produce beneficial outcomes. 

The deinstitutionalization movement has been fueled 

to date largely by ideology. But at this stage of 

development it becomes important to bring 

empirical evidence to the task of refining 

community integration strategies to ensure that our 

efforts are having the desired effect. Heal 

proposes six conceptually different clusters of 

variables that he considers reflective of the 

effectiveness of community living arrangements: 1) 

levels of individual and social competence (e.g. 

independent living skills, problem-solving skills, 

adaptive behaviors, socialization), 2) approximation 

to normalization (geographical location, 

environmental blending with the neighborhood, 

comfort and appearance), 3) individuals' 

satisfaction with their placements, 4) others' 

satisfaction with the placement, 5) residential 

climate (e.g. how highly structured, extent of 

achievement orientation, nature of interpersonal 

relationships, and 6) cost of services (Heal, 1988). 

THE CASE FOR INCLUDING THE 

CONSUMER'S PERSPECTIVE 

Heal points out that among these various 

measures of success, clients' satisfaction with their 

living situation may be the most neglected outcome 

measure of all, and yet it is perhaps the most 

important. A variety of different attempts have been 

made to include client satisfaction measures in 

evaluating outcomes, demonstrating that residents 

can provide reliable information concerning their 

level of satisfaction with their community 

placements. Unfortunately, these studies have 

generally involved individuals considered mildly or 

moderately retarded. If all individuals labeled 

retarded, including those with severe disabilities, are 

to have a voice in their destiny, the methods of 

measurement will have to be improved. Evaluators 

and practitioners will need to develop ways to capture 

people's perspectives, even if they have limited 

language skills. 

This may require approaches such as in- person 

interviews, observational techniques, or inter-peer 

self-report. The support of research to develop 

better measurement methodologies may be an area 

where the federal government can make a 

significant contribution to furthering the state-ofthe-art in assuring quality community integration 

programs. Another outcome area that has been given 

increasing attention in recent literature is what's 

referred to as "quality of life". Bob Schalock, for 

example, has been developing, testing and refining 

quality of life measures for several years 

in an effort to capture the extent to which 

individuals who participate in innovative employment and community integration efforts are 

really better off as a result of the services they 

receive and the changes they experience (Schalock, 

1983). One of the criticisms of efforts such as these 

is that again, they may tend to focus on the service 

provider's perspective on what constitutes quality 

living, rather than that of the client (Heal, 1988). 

A good example of the insights that can be 

gained from seeking out the clients' perspective 

comes from BPA's recent work for the U.S. Department of Education to develop performanc

measures for supported employment programs. We 

began with simple constructs such as hours worked 

and wages earned, and then began to tackle more 

difficult areas such as kind and amount of 

support, and level of integration achieved. We ran 

into concerns that some programs might be moving 

individuals from an environment they actually 

preferred into an environment in which they 

wouldn't thrive. It became important to look at a 

bigger picture than simply what goes on at the job 

site. Many practitioners have stressed the value of 

social networks, self-esteem and self-direction as outcomes of quality supported employment programs. 

e

In our efforts to develop national consensus on 

the appropriate measures, we brought together key 

experts from around the country. Consensus was 

reached in a range of areas, but the piece that was 

missing was the consumer perspective. So we asked 

People First, a consumer organization of individuals 

with developmental disabilities, to designate some one 

to talk to us about what consumers value as outcomes 

of supported employment. At first we had difficulty 

getting meaningful input; it was easy to agree that all 

of the things we had identified as 

169 
outcomes were important. Then we found a new 

way to ask the question — How would you help 

a friend choose a job? What would you look for? 

The results were surprising and insightful: 

First, whether the supervisor treats us like 

grown-ups; 

Second, whether they judge us on how fast we 

work — we're not fast, so why do they always 

put us in jobs where we're judged on speed? 

Third, whether there is good light and fresh 

air and it's a comfortable place to work. 

The fourth priority was wage level, followed by 

all the other outcomes identified by the researchers 

such as number of hours per week and job stability. 

These priorities reflect individual values that were 

influenced by the kinds of job placements often 

typical for individuals with severe disabilities. But 

fortunately, there are exceptions. We learned of 

an individual whose job was taking care of the salad 

bar in a fast food restaurant. He had a model 

sparkling salad bar, with every item always filled 

to the top and other employees came to visit his site 

during their training. This worker had been 

through sheltered work, he'd tried competitive 

placements and failed, but was fortunate enough 

to be eligible for supported employment. He was 

also fortunate to be able to communicate his need for 

work that took advantage of his strengths rather 

than highlighting his weaknesses. Although it may 

take more effort to understand the consumers' 

perspective about which outcomes should be valued, 

we mustn't fool ourselves into thinking that they 

can't tell us, just because we haven't learned how to 

ask the questions. 

Having talked to some consumers about what 

they value, and reviewed the literature, its 

possible to begin formulating some ideas about 

what a set of outcomes might look like that cuts 

across professional and consumer perspectives. 

Much more work is needed to develop and validate a 

definitive set of measures, but the following 

represent some areas that can be proposed for 

consideration as measures of the quality of 

community integration efforts: 

1. Community Participation — one of the 

most important indicators of how effectively 

individuals function in the community is their ability 

to access community resources. This includes 

whether individuals are personally aware of what 

resources are available and able to make their own 

choices and initiate their own activities in terms 

of accessing those resources; if not, whether 

someone else is available to provide the 

appropriate level of guidance or assistance. Too 

often only two options exist, either an individual 

has the ability to independently access one's own 

resources, or the choices are simply made by 

someone else. It is also important to consider how 

much individuals actually make use of their local resources and how accessible they are (in terms of 

hours available, proximity to transportation, etc.). 

Mobility is also an important aspect of community 

participation — can individuals use mainstream 

transportation effectively or drive their own car? 

Are they safe pedestrians? Another extremely 

important aspect of community participation and 

one that affects many other areas as well is the 

extent and nature of individuals' social networks 

and friendships. The kind of activities that friends 

participate in together (civic clubs, YMCA, 

churches, etc.) and developing relationships with 

non-disabled acquaintances as at churches, YMCA 

and other kinds of places.

2. Employment —while individuals certainly 

can enhance their quality of 'community living 

without employment, the opportunity to participate in 

the workforce dramatically expands an individual's 

horizons in today's society. Employment brings about 

a sense of satisfaction and fulfillment, and it also 

provides an opportunity for making friends, sharing 

resources and enhancing skills. Characteristics of 

employment important to measure include hours 

worked, earnings, job retention, how the 

supervisor treats the worker, the appropriateness of the 

job, match, (e.g. whether they are judged on speed, 

whether the work matches the individual's skills), 

the work environment etc. 

3. Expandable Income — this is a concept 

sometimes much more meaningful than simple 

earnings, and focuses on the portion of income 

(whether it comes from earnings or other sources) 

that an individual has personal control over. It 

addresses whether an individual is financially better 

off. Money can be very empowering and 

expendable income is a very important aspect of 

quality of life. Increased purchasing power can 

increase the kinds of activities people can participate 

in, the kinds of things they can purchase for 

themselves, and their sense of self-worth and selfesteem. 

4. Family Relationships — the more effective 

the community integration program, and the better 

the support that's provided, the more that stress on 

the family is relieved. The more opportunity family 

members have to get on with the rest of their lives, 

the healthier the relationships among family 

members. Effective community integration may mean 

enhancing the ability of families to stay together, or 

it may mean independent living in settings away 

from parents. In either case the strength and nature 

170 
of family relationships can be good indicators of the 

success of community integration efforts. 

5. Personal Growth — one of the biggest 

challenges in community integration efforts centers 

around the concept of choice — how to help 

people understand the concept of choice, how to 

help them practice making choices, how to help 

them understand how to use choice skills to make 

choices that really do meet their own needs, and how 

to put them in a position where they actually have 

some options to choose from. Another important 

aspect of personal growth is the chance to fail. For 

most people the least restrictive environment is 

one in which the freedom to try and fail is not unnecessarily limited by overprotection or narrow 

views of individual potential. Equally important are 

opportunities to build self-esteem through achieving 

personal goals and developing new skills. 

6. Cost — While some would argue that cost is 

not a legitimate quality concern, human service 

professionals are constantly fighting the battle of 

limited resources. The traditional conflict between 

the best available options for an individual and 

society's interest in distributing scarce resources as 

widely as possible, is increasingly the focus of 

public debate regarding the most effective allocation 

of resources available for human service programs. 

Though improvements in service quality do not 

always result in increased costs, "there can be little 

doubt that costs and quality are generally interdependent" (Bradley, 1984). 

PUTTING IT ALL TOGETHER: WHO SHOULD 

DO WHAT? 

Once an array of desirable outcomes has been 

chosen, such as those mentioned above, the next 

challenge is to build a system for ensuring that 

these outcomes become the target of community 

integration services, We've already stated that 

services to promote community integration don't 

comprise a single service system that is easily 

regulated through a single agency or system of 

standards. Obviously one first important step will 

be to develop consensus on the aspects of quality we 

want to stress. Through a common understanding of 

what comprises quality in community integration, the 

various regulating agencies that already participate in 

the quality assurance process with many of the 

existing providers of service can help to ensure that 

quality assurance is used as a mechanism to enhance 

quality rather than simply requiring minimum 

performance. 

Developing this kind of common understanding will require additional research. An 

important role of the federal government in this 

process will be to fund further research into areas 

such as: 

 service practices associated with success — 

establishing empirical evidence that valued inputs 

and processes do, in fact, lead to desired 

outcomes; 

 developing reliable measures of some of the more 

complex qualitative outcomes such as extent of 

choice, self-esteem, and measures of community 

participation; 

 developing better ways to elicit information from 

consumers with severe intellectual and 

communication impairments to maximize their 

involvement in the process and ensure that 

"quality" is being defined on the basis of what 

they value as well as on the values of 

practitioners and researchers; 

It's absolutely critical that families and 

consumers be involved in the process. It's not 

enough to simply provide licensing and accreditation 

of providers, because ensuring high quality 

outcomes involves many decisions along the 

way. Decisions need to be made about where an 

individual gets services, how much of the services 

should come from the social services system, which 

services can appropriately be provided by an 

individual's own family and relatives, and what kinds 

of support can be offered by their church or local 

independent living center. The interrelationship of 

a whole network of specialized services and generic 

supports suggests the local community itself can be a 

very important vehicle for enhancing the quality of 

the services available, but with adequate information. 

A look at other human services systems suggests a 

rapidly growing movement towards the private 

market place — uses of vouchers for buying health 

care, for example. Theoretically consumers regulate 

quality through the influence of their purchasing 

power. In the context of community integration for 

individuals with developmental disabilities, this 

approach does have some inherent limitations: 

 There is some question about how many DD 

adults have the personal capacity to evaluate 

information about programs and make 

informed, reasoned choices. Where their 

ability to self-advocate and select services is 

limited, family members or guardians may not be 

sufficiently well-informed about the state-of-theart and most effective service approaches; 

 In many communities there simply aren't 

multiple providers of services such that a true 

"market" exists whereby consumer choice can 

be exercised to ensure high quality services; 

171 
 Even where multiple choices are available, some 

kind of oversight is needed — the 

"marketplace" cannot itself be expected to 

evaluate different approaches, nor can each 

individual reasonably be expected to gather 

widespread information about a wide range of 

programs from which to choose. 

 If all programs available in a given community 

need improvement, a mechanism is needed to 

stimulate change. Program self- assessment is 

one tool, but may not be sufficient to bring about 

program improvement if system disincentives 

exist; so certainly going solely to a private market 

place approach wouldn't work. 

In spite of these reservations, there remains an 

important role in any national quality assurance 

effort for the simple provision of good 

information about best practices and client outcomes. 

For example we have seen how simply publishing 

the results of educational tests for local schools, for 

districts, and for states leads to increased public 

attention and awareness, and often to communitybased pressure and movement for improvement. 

Thus, another very important role of the 

federal government is dissemination of current and 

timely information that can enhance the quality of 

community integration efforts by maximizing the 

ability of consumers and local communities to play 

an active role in the quality assurance process. Only 

when information about best practices is readily 

available can individuals and practitioners make 

effective choices about the service delivery 

approaches most likely to fill a need in their 

community or for a particular consumer. 

Dissemination of current information about 

outcomes and best practices will also serve to 

enhance the effectiveness of state and national 

accreditation efforts. In addition to existing 

regulating mechanisms there may be an increasing 

need for other organizations to become involved 

in the process such as state DD councils. 

How can such a quality assurance system 

possibly extend to the many communities across 

the country? Clearly development of any quality 

assurance system will take 5-10 years before most 

communities could be directly examined in terms 

of their quality assurance process. In the short run, 

the process would be enhanced by development of 

better measures and better measurement 

procedures, consensus building on values to be 

targeted, empirical evidence of links between 

practices and outcomes, and strong efforts to 

disseminate information about the current-state-ofthe-art and future directions in promoting community 

integration for individuals with developmental 

disabilities. 

REFERENCES 

Braddock, D. et al. "Challenges in Community 

Integration," in Integration of Developmentally Disabled Individuals into the Community, Heal, Hagney, and Amado, Eds. 

Brooks Publishing, 1988. 

Bradley, V. et al. Assessing and Enhancing The

Quality of Services, Human Services Research Institute, 1984. 

Haney, J. "Empirical Support for Deinstitutionalization," in Integration of Developmentally Disabled Individuals into the Community, Heal, Hagney, and Amado, Eds. 

Brooks Publishing, 1988. 

Heal, L. Evaluating Residential Alternatives in 

Integration of Developmentally Disabled 

Individuals into the Community, Heal, 

Hagney, and Amado, Eds. Brooks Publishing, 

1988. 

Martin, J. "Providing Training in Community and 

Domestic Skills," in Integration of Developmentally Disabled Individuals into the 

Community, Heal, Hagney, and Amado, Eds. 

Brooks Publishing, 1988. 

Obermann, C. A History of Vocational 

Rehabilitation in America, Minneapolis. 

Denison, 1965. 

Schalock, R. "Service for the Developmentally 

Disabled Adult: Development, Implementation 

and Evaluation. Baltimore: University Park 

Press, 1983. 

Schutz, R. "New Directions and Strategies in 

Habilitation Services: Toward Meaningful Employment Outcomes," in Integration of Developmentally Disabled Individuals into 

the Community, Heal, Hagney and Amado, 

Eds. Brooks Publishing, 1988. 

Toms Barker, L. et al. Development of Performance Measures for Supported Employment Programs, Berkeley Planning Associates, 

1986. 

Turkel, S. Working. New York: Pantheon, 1972. 

172 
Quality Assurance from a Service 

System Standpoint 

by Ronald W. Conley, Ph.D 

DHHS-Administration on Developmental Disabilities 

Washington, D.C.

When I was invited to participate in this 

panel, I was asked to prepare a paper on the topic 

of the work disincentives that are inherent in most 

of the programs that provide services and/or support 

to persons with developmental disabilities. My 

initial reaction was that the subject had been 

extensively discussed in recent years and I 

wondered what I could add to the topic that had not 

been discussed previously. Nevertheless, I agreed 

to participate because I believed that it was 

important that this topic be addressed at this 

conference. It is important because the issues 

surrounding work disincentives are numerous and 

complicated and few people fully understand them, 

and because a major reduction in these work 

disincentives is necessary in order to assist service 

providers to achieve their objectives, particularly 

employment. 

I was also initially puzzled as to how to relate 

the subject of work disincentives to the topic of the 

panel - quality assurance. After considering the issue, 

it became apparent to me that the way to relate my 

subject to the topic of this panel was to consider 

"quality assurance" from the standpoint of a systems 

perspective. One of the problems with methods of 

assessing quality assurance is that we usually 

consider doing so from the standpoint of individual 

programs, or some part of the total service system, 

such as residential care, but we rarely examine the 

effects of the entire set of programs in the service 

system on clients. 

THE SERVICE SYSTEM 

What is the "service system" and why is it 

important to consider "quality assurance" from this 

broad perspective? There are numerous programs 

providing support and/or services to persons with 

developmental disabilities. As examples, income 

support may be provided by Social Security 

Disability Insurance program or the Social Security 

Childhood Disability Beneficiary program 

(SSDI/CDB), the Supplemental Security Income 

program (SSI), private disability insurance, civil 

service, or railroad retirement. Health care 

financing may be obtained from Medicaid, 

Medicare, and numerous private plans. Social 

Services may be received from agencies funded by 

the Social Services Block Grant. Vocational 

rehabilitation services are available from state 

vocational rehabilitation agencies. Residential care 

may be funded by the Medicaid Intermediate Care 

Facilities for Persons with Mental Retardation 

(ICF/MR) program or Housing and Urban 

Development (HUD) programs. 

For the most part, these programs function 

relatively independently of each other. These 

programs are operated both publicly and privately, 

and by different levels of government - Federal, 

State, and local. 

During the past forty years, there have been 

enormous changes in this services system. In brief: 

 It has become very large, serving millions of 

people and spending hundreds of billions of 

dollars. 

 It has become increasingly comprehensive encompassing a wide range of support and services. 

 At the same time, it has become complex, partly 

because of its size, and, as a consequence, is 

poorly understood by most people. 

 Of great importance is the fact that there has been a 

major shift towards the use of Federal funding 

by State and local governments, 

173 
largely due to the rapid growth of the social 

security, SSI, Medicare, and Medicaid programs 

- these programs account for the bulk of the 

resources expended by the service system. 

• Finally, there has been rapid and dramatic 

changes in the goals that are set for persons with 

developmental disabilities, in particular, the 

service system has changed to stress increasing 

independence and integration through education 

programs in public schools, employment in 

integrated work settings, and community care for 

persons with severe disabilities, many of whom 

would formerly have been excluded from 

schools, placed in institutions, and would have 

been considered unemployable. 

Two essential points about this service system 

must be stressed: 

First, many clients will receive services from 

multiple programs, both at a point in time, and over 

time. As an extreme case, it is conceivable for an 

adult person who is severely disabled to receive both 

SSI and SSDI, Medicare and Medicaid, social 

services, food stamps, vocational rehabilitation, 

HUD supported housing, and other services, all at 

the same time. As a child, the same person may 

have been in special education programs and 

received other services as well. 

Second, it is the combined and interacting 

effects of all of the programs in the service system 

that determines how successful clients will be in 

achieving the goals of the service system. Whether 

or not a person with severe disabilities becomes 

employed, for example, may depend upon the 

quality of the education programs that were 

provided during his or her youth, the availability of 

vocational and supportive services as an adult, the 

effects of work disincentives in the income support 

and health care financing programs, as well as 

other programs. 

From these observations, it necessarily follows 

that in assessing the effectiveness of programs, we 

should assess the combined and interacting effects 

of all of the programs in the service system on the 

goals set for clients, rather than any one program 

alone. It is hardly fair to blame the vocational 

rehabilitation program for failing to place a client on 

a job, if the client is discouraged from working by 

work disincentives inherent in the income support 

and health financing programs. 

SYSTEM GOALS 

In order to assess effectiveness, however, there 

must be a set of goals by which to measure the 

attainments/effectiveness of the service system. If such 

goals existed, this would constitute a national policy 

on disability. A fundamental characteristic of such 

goals would be that each program in the service 

system would be expected to support each of 

them and each program would be evaluated on the 

basis of the extent to which they assisted in 

the attainment of these goals, or impeded their 

attainment. 

Unfortunately, Congress has not yet legislated a 

set of national goals. Nevertheless, we can identify 

some goals that would certainly be a part of a 

national goal structure if one were to be 

established. These goals can be divided into those 

that should be established for individuals being 

served, and those that should be established for the 

service system as a whole. Goals that should be 

established for individuals are: 

1. Employment, whenever possible and feasible. In 

general, employment should be in integrated 

work settings (with support provided by the 

service system to maintain such employment, if 

necessary). 

2. Least restrictive care. Community-based residential 

care (rather than institutional care) should be 

provided if protective oversight is needed, and 

must be provided away from the family of the 

client. 

3. Family stability. In particular, children with 

disabilities should be assisted to stay with their 

families. 

4. Avoidance of poverty. 

5. Encouragement of savings. 

In general these first five goals should apply to 

all individuals being served. The next three goals 

represent aspects of the entire service system that 

are beneficial both to the individuals being served, 

and society as a whole. The service system should 

be: 

6. Equitable, in the sense that people with 

comparable disabilities should be entitled to the 

same support and services. 

7. Coordinated, that is, the programs should 

reinforce and complement each other. 

8. Efficient and dynamic. Not only should the 

service system achieve its goals at the lowest 

cost, but it should also be impelled toward 

seeking even more cost-efficient and more 

effective ways of achieving social goals. Only a 

naive optimist would argue that the current stateof-the-art represents the best possible way of 

providing services. 

ASSESSMENT NEEDS 

A meaningful assessment of the service system 

for persons with disabilities is a complex and 

difficult task that will require numerous simultaneous 

efforts. There must, of course, be measurement of 

what the system actually 

174 
achieves, i.e., how many people are placed on jobs, 

how many are placed in community-based housing, 

the size of such housing, the types of persons placed 

in different types of housing, how much is saved 

by persons who are disabled, etc. This type of 

assessment requires a comprehensive, on-going data 

system which, as you are aware, does not exist. 

But this is only part of what needs to be done. 

Further questions must be asked as to whether the 

job placements, the community placements, and 

other accomplishments result in the maximum level 

of productivity, independence, and general 

enhancement of the client's well-being. These 

questions may be partly answered by an on-going 

data system, particularly questions about the extent 

of community involvement by clients. But a more 

accurate and comprehensive assessment will require 

more sophisticated analyses of the data, particularly 

comparisons among States, and the use of special, 

controlled studies in which clients are placed in 

different types of employment, or housing, or other 

situations to see which alternative procedures results 

in the greatest gains and the least costs. 

The conduct of these data analyses and controlled 

studies will be greatly complicated because of the 

extreme heterogeneity among clients. Clients vary 

by the severity of their primary disability, by the 

number, type, and severity of additional handicaps 

they have, their attitudes, the amount of training they 

have, etc. The array of services that is most costbeneficial for one group of clients may not be so for 

another group. Some clients may do well in small, 

semi-independence apartments while others may 

require far more supervision and it may be more costeffective to place these more dependent clients in 

larger residences. It is extremely difficult to carry out 

data analyses or set up controlled studies in which 

we can be certain that these differences do not 

create problems in interpreting the data. 

It should be clear that when we discuss 

evaluation in these terms, then the terms 

"evaluation" and "quality assurance" become 

synonymous. 

Unfortunately, we lag far behind where we 

should be in our understanding of the effectiveness of 

the service system in terms of achieving goals 

which we outlined above. It is, surprising that 

there has been so little effort to empirically 

determine which types of housing are most 

appropriate for which persons with different 

severities of developmental disabilities, and different 

types of additional handicaps, or which types of 

supported employment systems are best suited for 

different clients. The lack 

of ability to determine the most cost-effective and 

beneficial forms of residential placement is a 

particularly vexing problem in residential care 

where some States persist in placing persons with 

mental retardation in large institutions and then 

arguing that they could be placed in less restrictive 

care if they had more flexibility in the use of federal 

ICF/MR funds. 

ASSESSMENT OF PROGRAM POLICIES 

There is one type of assessment that is immediately possible for the service system. We can 

examine the policies and operating practices and 

procedures of the various programs to determine 

whether or not they support the suggested national 

goals that we outlined. If they do not, then we can 

be reasonably confident that the system does not 

assure the appropriate quality of services. In fact, it 

will frequently assure that services will be 

inappropriate. Although the bulk of the following 

discussion is devoted to work disincentives, the 

discussion will extend to other ways in which the 

system inhibits the attainment of social goals. Let 

us take each of the national goals in turn. 

1. Employment: Most of the resources expended by 

the service system are for income support and 

health care—approximately 90 percent of total 

expenditures. Although recent years have seen 

reductions in the work disincentives in these 

programs, major work disincentives still remain to 

discourage persons with developmental 

disabilities from accepting employment. 

One way in which programs in the services 

system impede employment is to foster the 

development of adverse work attitudes and 

dependency. In order to establish eligibility for SSDI 

or SSI, and, in most cases for Medicare or Medicaid, 

applicants must demonstrate that they cannot earn 

over the Substantial Gainful Activity level, currently 

set at $300 per month. This is relatively easy to do 

if they have not worked on a job with earnings 

above the SGA level since the onset of their 

condition, and if they fall on a long checklist of 

disabling conditions established by the Social 

Security Administration as presumptive evidence 

of inability to work. If they cannot meet this test, 

then they must qualify for these programs on the basis of medical evidence, with some account taken 

for the effects of limited education, advanced age, 

previous occupation, and work experience. This 

process takes from two months to a year, and is 

often characterized with appeals by unsuccessful 

applicants and litigation. It is almost inevitable that 

the net effect is destructive to the worker's morale 

and reduces his or her willingness to return to 

work. 

175 
A second way in which the service system 

impedes work is by creating massive work disincentives. Acceptance of a job by persons receiving income support and/or health care 

financing may result in their receiving little net gain, 

and sometimes a substantial loss in income. The 

ways in which these work disincentives operate 

have been discussed extensively in recent years. 

They are briefly summarized as follows. 

Although it is convenient to examine work 

disincentives on the basis of individual programs, it 

must be emphasized that it is the total loss of benefits 

from all programs that an individual must consider 

when deciding whether or not to risk a return to 

work. 

Work disincentives are particularly severe in 

the SSDI program. Any beneficiary who earns 

over $300 per month is placed on a trial work period 

of 9 months and then, if found capable of earning 

over this amount, terminated from the program. Since 

benefits may range as high as $2000 per month, and 

the average benefit is over $450 per month, there are 

obviously situations in which substantial financial 

loss will be incurred by a return to work. 

Certainly, many beneficiaries would have little 

incentive to accept the low-paying and insecure jobs 

that are likely to be available to them. 

Work disincentives are less severe in the SSI 

program, largely because of recent legislation 

(usually referred to as the Section 1619(a) program) 

which, after a $85 disregard, causes benefits to be 

reduced by 1 for each $2 of earnings so that a 

person is almost always made better off, in terms of 

net income, by a return to work. In fact, in 1989 

individual recipients may earn up to $821 per 

month before losing entitlement to all Federal SSI 

benefits and a couple may earn up to $1191 per 

month. In some States with State supplements, they 

may still continue to receive a State payment even 

after losing entitlement to Federal benefits. 

Health care benefits have a value that is often as 

great, or greater, than income benefits to recipients of 

SSDI or SSI. Since 1981, persons who qualify for 

Medicare continue to be eligible for Medicare for 

three years after the termination of the trial work 

period, reducing, but not eliminating the fear of 

loss of this benefit. 

The potential for loss of Medicaid benefits have 

been greatly reduced as a consequence of recent 

legislation (usually referred to as the Section 1619(b) 

program) which enables persons on SSI who return 

to work to continue to receive 

Medicaid benefits as long as annual earnings 

remain below a threshold income which can be 

as high as $20,000 (and even higher). 

The Section 1619(a) and 1619(b) programs have 

another feature which greatly reduces work 

disincentives. Obviously, people can receive 

extended medicaid benefits under the Section 

1619(b) program even though they are no longer 

eligible for the extended SSI payments under the 

Section 1619(a) program. Moreover, such an 

individual will now become automatically re-entitled 

to Section 1619(a) SSI payment if his or her income 

falls below the breakeven point. This was not 

true prior to the renewal of these programs in 

1987. If a person lost his or her entitlement to 

Section 1619(a) benefits before this revised 

legislation, he or she would have to re-establish 

eligibility under the basic SSI program before 

receiving any SSI payments. This required 

demonstrating that he or she could no longer earn 

$300 per month, a proof that might be difficult in 

the case of a former recipient who had been earning above this level for any significant period of 

time. 

A third way in which the service system 

impedes work is by providing recipients with 

income security as long as they do not return to 

work. After all, we all attempt to protect our 

basic income by insisting on seniority provision at 

work, or tenure at universities, or bailout provisions 

by executives, and by other means. Why should 

we expect that disabled people, often with limited 

work alternatives, would be less willing to give 

up income security? 

Apart from these work disincentives, we 

should note the lack of sufficient vocational programs 

in the service system to provide on-going support to 

severely disabled persons who need such assistance 

in order to work. 

Although, there are other ways in which the 

service system impedes employment, these are the 

most important. 

2. Least restrictive care: The second national goal 

is least restrictive care. The ICF/MR is the major 

source of federal funds for providing housing for 

persons with developmental disabilities. 

Unfortunately, this program, which was 

designed to reform and improve institutional care, 

creates major financial disincentives to 

community-based residential care. One way in 

which it has done so is to induce States to make 

enormous capital investments in large institutions 

in order to qualify them as ICFs/MR and therefore 

eligible for Federal support. They could recapture this investment only by remaining in 

operation and charging Medicaid for depreciation 

on this investment. We should note, however, that 

the ICF/MR program also stimulated 

community-based care since 

176 
States had to reduce their institutional 

populations in order to meet the space requirements of the ICF/MR program. A more 

serious institutional bias on the part of the 

ICF/MR program is created because only 

persons who are in need of 24-hour-a-day care 

are eligible for the program. Lacking standards 

to determine who should require such an 

intensive level of care, States have had few 

restrictions on who they could place in 

institutional care and a large financial incentive to 

place persons in ICFs/MR. Since even small 

community-based ICFs/MR must meet these 

eligibility conditions, they often become, in 

effect, small community-based institutions. This 

condition of eligibility contradicts the basic 

rationale for providing care in the community 

which is to maximize independence and 

community involvement. 

3.Family Stability: Family stability is also jeopardized by some features of the service system. 

The care of some children, particularly those who 

have serious medical problems, or major care 

needs, is beyond the financial and physical 

capability of many families. Unfortunately, funds 

to assist families to keep their children at home are 

limited. In consequence, some families have had to 

institutionalize their children in order to qualify 

them for Medicaid so that they can obtain medical 

and other services that they need. 

4. Avoidance of Poverty: Often the service system 

requires what amounts to a vow of poverty in 

order to qualify for services or other support. For 

example, in order to receive SSI or Medicaid 

benefits in 1988, recipients had to meet an asset 

test which allowed them to own a home, 

personal possessions, a car, a burial plot, and no 

more than $2,000 in countable assets if an 

individual and $3,000 if a couple. The effect of 

this is to cause some families to spend down into 

poverty in order to become eligible for the 

programs. 

Even the SSDI/Medicare programs have features 

which are likely to cause poverty despite the 

absence of an asset test to qualify for these programs. 

In the case of SSDI, applicants must wait 6 months 

after the onset of disability before becoming 

eligible for benefits, a period that is ample to 

spend down a large part of one's assets. In the case 

of Medicare, disabled SSDI beneficiaries must wait 

24 months after becoming eligible for SSDI before 

becoming eligible for Medicare. Beneficiaries who 

lack private insurance and who have substantial 

medical problems will probably be poor before the 

two and one-half year wait to become eligible for 

Medicare is over. 

5. Encouragement of Savings: Few people on SSI 

have any incentive to save since the most 

identifiable reward for savings is a one dollar 

reduction in the SSI benefit for each dollar of 

interest. Moreover, if savings exceed the asset 

limit, eligibility for SSI and Medicaid will be 

terminated. These restrictions are likely to 

become increasingly onerous as more people 

make use of extended Medicaid benefits and 

have earnings as high as $20,000 and even more 

per year. 

6. Equity: There are numerous instances where 

people with similar conditions are treated 

differently within the service system. One 

obvious inequity is that payments to SSDI 

beneficiaries are not phased down gradually as 

earnings rise as are payments to recipients of 

SSI, even though conditions of eligibility and the 

process of determining eligibility is identical. 

Persons receiving SSDI will lose all entitlement 

to benefits if their earnings exceed $300 per 

month. In contrast, persons receiving SSI may still 

receive payments even when earnings are 

double and triple this amount. 

Another inequity is that the individual who 

establishes eligibility for SSI may return to work and 

still receive both SSI and Medicaid benefits while 

another, similarly disabled person with the same 

earnings, will not be eligible for these benefits if 

he or she went to work prior to becoming eligible 

for SSI. One consequence of this latter inequity is 

that students with disabilities who are leaving 

school are sometimes encouraged to prove 

inability to work in order to become eligible for 

SSI and Medicaid rather than being encouraged to 

seek work immediately after leaving school. 

7. Efficiency and Dynamism: There are major 

impediments to efficiency and rapid development and adoption of new and improved ways 

of providing services in the service system. 

Perhaps the greatest impediment is the system 

lacks a comprehensive and ongoing data system 

that will document the strengths and weaknesses 

of the system and enable policy to be developed 

on the basis of positive knowledge rather than 

intuition and philosophy. Without such a 

comprehensive data system, there can be no 

assurance that the most appropriate services are 

actually provided. Our lack of knowledge of the 

costs and benefits of various forms of residential 

care is scandalous and has greatly contributed to 

the slow pace of deinstitutionalization. 

The availability of large amounts of Federal 

funds has become another major factor inhibiting the 

efficiency and the dynamic tendencies 

177 
of the service system. Some States organize their 

service systems in such a way as to assure the receipt 

of large amounts of Federal funds rather than in 

ways that would optimize the wellbeing of their 

clients. In consequence, clients are sometimes 

placed into inappropriate, inefficient, and old 

fashioned residential care arrangements that qualify for 

ICF/MR funding, or they are left in day care 

arrangements that also qualify for ICF/MR funding 

rather than being placed in substantial employment. 

8. Coordination: The importance of coordinating 

services has been discussed for as long as more than 

one program has existed. Many initiatives and 

research has been carried out on this issue. 

Nevertheless, the service system is continually 

criticized for its failure to assure that the various 

programs re- enforce and support one another. 

There are many factors causing poor 

coordination. One way to approach this 

problem is to note that the service system 

generally lacks the following aspects, each of 

which is essential to effective coordination. 

a. The service system does not have clear cut 

and realistic goals which each program is 

required to support. 

b. The service system lacks a unified service plan 

for each client that would include Federal 

(SSDI, SSI; Medicare) as well as State and 

local programs. It should be noted that some 

States have established procedures for a 

common service plan among State 

controlled agencies. However, States cannot 

compel Federal participation - a major problem 

since Federal programs control a large 

percentage of the funds that are made 

available to the client. States may find it hard 

to convince persons with severe disabilities 

to return to work when this would 

jeopardize Federally provided income 

support and health care. 

c. Finally, the service system generally lacks a 

unified intake procedure that would insure 

that clients will not fall between the cracks, 

e.g., to assure that if they are assessed as too 

disabled to qualify for vocational rehabilitation, 

they are not also assessed as insufficiently 

severely disabled to qualify for SSI. 

Clearly there are major problems in the service 

system for persons who are disabled. Nevertheless, 

there are solutions to all of these problems. There 

have been much legislation enacted by Congress in 

recent years designed to ameliorate these problems 

and there is every indication that this trend will 

continue. There is widespread support for reform of 

the ICF/MR program, and growing support for reform 

of the SSDI program. 

In ending this paper, I wish to make one vital 

observation. We need to develop the mechanisms for 

emphasizing accountability for the service system as 

a whole. This requires a comprehensive ongoing data 

system supplemented with detailed controlled 

studies of the effectiveness of services. In no other 

way can we assess the quality of services that are 

being provided, and learn how to take the steps that 

will assure the provision of high quality services. 

Clearly, we need major reform of many parts of the 

service system. I believe that the more we emphasize accountability for the service system as .a 

whole, the more rapidly these reforms will take 

place. 

178 
Accreditation Standards: The Public/Private Partnership 

by Mary C. Cerreto, Ph.D.* 

Director of Psychology 

Franciscan Children's Hospital 

and Rehabilitation Center 

Brighton, Massachusetts

ACDD is a national, comprehensive quality 

assurance program that develops standards for 

services of quality to individuals with developmental 

disabilities, offers training and technical assistance to 

persons who provide those services, conducts 

professional, on-site, observational surveys to assess 

compliance with the standards, and awards 

accreditation to those agencies found to be in 

substantial compliance with the standards. The views 

expressed in this paper do not necessarily reflect 

the position and/or policies of ACDD and no official 

endorsement of ACDD should be inferred. 

Alternately in developing the concepts for this 

presentation I contemplated descriptive titles such 

as "No Malice in Blunderland," the "Crisis in 

Accountability," "Assuring Quality of 

Accountability," "Quality is Free," and "Regulation: 

Have We All Gone Mad?" And lest some day I run 

for public office, let me credit the No Malice in 

Blunderland to Professor Robert Reish in his book 

TALES OF A NEW AMERICA, the concept of 

assuring quality of accountability instead of 

quality of life to the New York State Association 

for Retarded Children, the title QUALITY IS 

FREE from the book of the same name by the 

industrial quality assurance expert Philip Crosby, and 

the idea that maybe we've all gone mad with 

regulation to Clarence Sundram, the Chair of the 

New York Commission on Quality of Care. 

This paper will address accreditation standards 

with particular attention paid to the theme of 

public/private partnership by 

 briefly reviewing the purposes of quality 

assurance, 

 assessing the role of accreditation standards in 

achieving the purposes of quality assurance, 

 examining the public/private partnership in 

relation to accreditation standards and the assurance 

of quality in the provision of services for persons 

with developmental disabilities, and 

 provide food for thought, if not recommendations, for future policy directions to enhance 

the ability of providers to provide aggressive, 

accountable habilitation services, including family 

and community support services, to individuals 

with disabilities and their families. 

PURPOSES OF QUALITY ASSURANCE 

Prior to discussing the purpose of quality 

assurance, it might be helpful to begin by noting 

what it is NOT — it is not "quality control." 

Webster defines quality control as "an inspection for 

defects." While there is little argument that this is 

a component of quality assurance, it is by no means 

its essence. Combining the definitions of "quality" 

and "assurance" results in the concept of an ongoing process of "feeling confident in the 

coming or attainment" of "a degree of excellence" 

based upon "inherent features" or "distinguishing 

attributes" of a given program of services for persons 

with disabilities. 

While quality assurance has been equated with 

regulation and the meeting of minimal requirements 

in the public sector, the private sector is 

increasingly focusing on the concept of quality 

enhancement of maximal standards for the 

assessment of the well-being, growth, autonomy, 

productivity and community integration of persons 

with disabilities. 

Several of the purposes of quality assurance have 

been clearly elucidated by my colleague Val 

Bradley of the Human Services Research 

179 
InstituteWho has noted that quality assurance 

systems are designed to serve five fundamental 

governmental responsibilities: 

 to assure that providers of human services have 

the capability to provide an acceptable level of 

service; 

 to assure that client services are provided 

consistent with accepted beliefs about what 

constitutes good practice; 

 to assure that a given commitment of 

resources produces a reasonable level of 

service; 

 to assure that the services that are provided have 

the intended effect; and 

 to assure that the limited supply of services is 

provided to persons most in need. 

Advocates, consumers and their families, and 

providers further explicate these purposes in terms 

of the values that underlie a quality assurance 

system, such as those found in the ACDD 

STANDARDS FOR SERVICES FOR PEOPLE 

WITH DEVELOPMENTAL DISABILITIES. 

 to assure that each individual has access to services 

that enhance his or her development, well-being, 

and quality of life, 

 to assure that each individual has access to the 

most normal and least restrictive social and 

physical environments consistent with his or her 

needs, 

 that the rights of each person with disability are 

affirmed and protected, and 

 to assure that services are designed and 

implemented with the full participation of the 

individual and his or her family in ways that foster 

the individual's autonomy and productivity in 

community settings and enhance his or her social 

relationships with peers who are disabled and peers 

who are not. 

Let's review then for a moment the words and 

phrases you have heard in relation to the private 

sector concept of quality assurance: capability, 

beliefs about good practices, commitment of 

resources, intended effects, persons most in need, 

development, well-being, quality of life, least 

restrictive social and physical environments, 

affirmation and protection of rights, autonomy, 

productivity, social relationships, and community 

integration. 

With these concepts in mind let's examine the 

role of accreditation standards in achieving the 

purpose of quality assurance. 

THE ROLE OF ACCREDITATION 

STANDARDS 

The reality is that they have no role. It is the 

public sector that determines the regulations or 

standards that define quality assurance, and not the 

accreditation standards of the private sector. 

By virtue of state or federal regulation, 

quality is defined in terms of the expectations for 

performance of a funding source and measured in 

terms of the performance of the service provider. 

There is no enforceable definition of quality that 

exists apart from the requirements set forth for a 

provider to meet as a condition for receiving 

payment for the services provided. While empirical 

research and clinical practice may daily provide us 

with information and guidelines on, for example, the 

appropriate use of medication with persons who 

have developmental disabilities and emotional 

problems or the proper way to conduct case 

management services, quality assurance for purposes of 

a funded program can rely only on what the service 

providers have been legally required to do. 

What legal system then do we currently have 

in place in relation to quality assurance 

mechanisms? 

LOCAL AND STATE LICENSING are the 

most typical systems for permitting programs that 

serve persons with developmental disabilities to 

operate. These systems use regulations which 

specify operating criteria against which programs are 

assessed. The attainment of a license permits 

programs to operate and permits funds to be claimed 

and paid. 

Programmatic licensing regulations vary 

widely among regions, states, counties, and local 

settings. Some focus primarily on health and safety 

issues, while others regulate the fine details of 

program operation and implementation. States also 

variably license some of the professionals who work 

in programs for persons with disabilities. 

While most organized programs are licensed, the 

smaller the unit of service and the more 

independent the person with disabilities (e.g., an 

individual living in an apartment), the less likely 

the program is to be licensed or regulated. The 

present public approach to quality assurance and 

the implementation of standards or regulations in 

this case is illustrative of one of the most critical 

current fallacies, that the programs of persons who 

may be more competent and can exert more 

independence and control in their own lives do not 

need the same conceptualization of quality 

assurance as do persons with more severe 

disabilities. There are few assurances for persons 

who may need a wide range of sequenced and 

coordinated support services such as information 

and referral, instruction on the hiring and firing of 

attendants, and transportation to work. 

At the licensing level we begin to see the 

illusion of the public/private partnership in re180 
lation to accreditation standards. Some States 

require, for example, that programs must be 

accredited by ACCD before they can be licensed. 

A second quality assurance mechanism 

is the STATE MEDICAID SURVEY AND CERTIFICATION process. If a program that serves persons 

with developmental disabilities receives Medicaid 

funds under the intermediate care facilities (ICF/MR) 

program, it must be licensed (in States that require 

Licensure) and certified by the State survey agency. 

The survey agency certifies that the program either 

meets Federal ICF/MR standards or operates with 

deficiencies that do not pose a threat to the health 

and safety of individuals nor preclude the provisions 

of "adequate" care to individuals served. Federal 

regulations address a wide range of aspects of the 

individual's life and service provision: rights, active 

treatment, behavior management, health care, safety 

and sanitation, physical environment. 

When the State survey agency certifies the 

facility, the State Medicaid agency then executes a 

provider agreement with the program providing the 

services. The provider agreement binds the agency 

to pay the facility for providing care at a set per 

diem rate as long as the facility remains certified. 

ICFs/MR must be resurveyed at least annually and 

recertified annually. 

Under the Home and Community Based 

Waiver program, those agencies that claim 

Medicaid payment must submit a plan to HCFA 

which assures that individuals receive quality 

programs. 

In this quality assurance system we also see 

the illusion of a public/private partnership. The 

former Medicaid regulations were based in the early 

1970's edition of the ACDD STANDARDS and the 

current regulations are based solidly in the 1983 

Edition of the ACDD STANDARDS, especially in 

the areas of active treatment and behavior 

management. Additionally, several states utilize 

verbatim sections of the ACDD STANDARDS as 

the basis of the regulations for the quality assurance 

plan of their Home and Community Based Waiver 

programs. 

The next level of quality assurance mechanisms 

to be addressed is that of FEDERAL MEDICAID 

MONITORING AND OVERSIGHT, conducted by 

desk reviews of survey and certification materials 

submitted by the States and by direct, onsite, and 

Federal surveys of participating facilities. HCFA's 

authority under the MEDICAID ICF/MR program is 

limited to promulgating facility standards and 

"looking behind" the procedural and substantive 

correctness of the State's survey and certification 

activity. This is quite different from the federal 

authority in the MEDICAID program in which 

HCFA certifies providers directly and in which the 

Secretary has the authority to deem private accreditation body standards as equivalent to federal 

regulations for the provision of quality services. 

Each of the three public quality assurance 

mechanisms and the standards or regulations attendant 

to them exist to define the conditions of payment to 

providers of services. 

THE PUBLIC/PRIVATE PARTNERSHIP 

Continuing along the same vein, while the 

private sector may assert a particular set of values 

and a particular set of quality service delivery 

practices, there is no public assessment of the 

performance of a program against those standards 

unless they have been legally promulgated by the 

State licensing body or by HCFA. The federal 

government does not currently have the authority 

to directly deem agencies that have attained 

accreditation by a national quality assurance body 

such as ACDD as in compliance with the 

certification requirements of the Medicaid program. 

Should States decide to utilize the ACDD process, 

the professional survey staff of ACDD would be 

required to survey agencies under the current 

federal regulations. During the time that it has taken 

HCFA to develop, disseminate for review, revise 

and obtain approvals on its soon to be released new 

regulations for participation in the ICF/MR 

program, ACDD has published a 1987 Edition of its 

STANDARDS FOR SERVICES FOR PEOPLE 

WITH DEVELOPMENTAL DISABILITIES and 

has released the Field Edition of its 1990 

STANDARDS. 

The current public quality assurance system and 

standards function primarily as a mechanism for 

payment for services. The Medicaid program is not 

an entitlement program for individuals; it is an 

entitlement program for States. An individual 

cannot walk in and request Medicaid funds unless a 

State deems that person eligible for services and 

has a bed. Should the State not do so, services can 

be denied, and are. 

Current legislation is strongly biased in favor of 

the public sector which pays itself first, views the 

private sector as a way to reduce costs, and 

increasingly relies on that sector to provide 

aggressive and accountable services. An all too 

frequent scenario has been the obtaining of ICF/MR 

funds for the proposed purposes of higher per diem 

rates to provide higher quality services through 

mechanisms such as enhanced staffing patterns, and 

the resultant utilization of those funds in meeting 

the increased demands of paperwork to comply with 

the regulations that are stipulated for payment. 

181 
The history of public regulation is one of dictating 

highly structured processes. Such a process assumes 

that if a program is organized in a certain way and 

does certain things, then the product will be 

"quality" service. All of us can cite programs that 

meet process and structure requirements and still 

do not meet the real needs of the individuals with 

disabilities whom they serve. 

In relation to accreditation standards, the 

public/private partnership is one of master/ servant. 

There is no role for private accreditation standards 

without the expressed approval of the States for 

licensing purposes. And there is no direct role at all 

for private accreditation standards in the current 

Medicaid ICF/MR program. A facility or program 

cannot independently choose to meet national 

accreditation standards as an assistance in the 

development, implementation, and monitoring of a 

quality assurance system designed to enhance the 

quality of services to persons with developmental 

disabilities and their families and as a requisite for 

payment of the services delivered. There is 

therefore little incentive for any provider to adopt 

an enhancement model of quality assurance as 

opposed to a minimum standard, deficit, regulatory 

model. 

This situation exists despite factors in the "state 

of the art" of accreditation standards and quality 

assurance mechanisms that would predict benefits 

from a truly equal public/private partnership. 

RECOMMENDATIONS 

1. Current proposed reform of the Medicaid 

program does not go far enough to assure the 

provision of quality service that truly meet the 

needs of individuals with developmental 

disabilities and their families. While provision 

after provision has been added to assure a wider 

range of community and family support services 

and coordination through case management, the 

basic conceptualization remains the same, that of 

an entitlement program to States. 

The perspective of "reform" should instead 

be one of "creation" — the boldness to develop 

and implement a NEW system in which the 

individual and his or her family is the focus. This 

is a system in which funding is provided on a per 

capita basis to individuals by virtue of meeting 

eligibility criteria for which an array of services 

is mandated. This is a system based in the Office 

of Human Development Services, a home which 

has the input from advocates, consumers, providers 

and professionals in the field and experience in 

research and demonstration projects to meet the 

current and changing needs of children and adults 

with developmental disabilities. 

2. Legislation should provide for facility or 

program choice within a range of rigorous 

accreditation standards and monitoring 

processes. Currently HCFA quality of services 

regulatory involvement occurs either in the highly 

regulated ICF/MR facility based program or the 

Home and Community Based Waiver authority 

that relies entirely on State assurances that quality 

services will be provided. Neither type of 

involvement has a future. It can be predicted that 

the facility based model of quality assurance will 

become more cumbersome and less prevalent 

and that as community services become increasingly disbursed, current methods of quality 

assurance will not be sufficient to provide 

knowledge about what persons with disabilities 

are receiving and what services are being funded. 

3- ACDD has long recognized that regardless of 

the nature of the service provided, the vehicle 

for providing it, or the environment in which it 

is provided, there are core standards of 

performance that are pervasive. For example, 

whether persons with disabilities live in a small 

apartment and work in a supported employment 

program or whether they live in a public 

residential facility that provides comprehensive 

training and treatment, if the agency serving 

them has control over important aspects of their 

lives, the individuals have certain rights that must 

be protected and asserted. 

As we focus on community integration and 

quality assurance mechanisms to serve a 

dispersed population in a diverse service 

delivery system, the opportunity arises for 

public/private sector collaboration in the development of a quality assurance system that 

has the following characteristics: 

 It should operate out of a core set of standards, 

applicable to all settings, with specialized 

requirements for discrete settings as necessary 

to meet the needs of the individual served. 

 The system should identify critical predictors of 

desired outcomes of the service delivery 

system. 

 There should be an explicit relationship 

between the funding source and the contracted 

service resource for outcomes being 

purchased. 

 The primary quality assurance role should be 

assumed by the State, but within authorities 

that are more independent of political and 

fiscal pressures than the present system. 

182 
 Voluntary accrediting bodies should assume 

a greater role in quality assurance. Private 

agencies competing with each other and 

together competing with States would 

have the desired effect of generally increasing the quality and effectiveness of the 

State's quality assurance mechanisms. 

4. And finally, a concerted public/private 

partnership is conducive to a productive approach to enhancing the science of quality 

assurance: the study of the relationship between 

accreditation standards and direct outcomes to 

individuals; the association between particular 

clusters of standards and knowledge about 

leisure, work or residential environments that 

foster optimal growth; the determination of the 

empirical basis of current accreditation standards 

and regulations; and the reliability and validity of 

the survey processes used to assess the 

implementation of accreditation standards and the 

quality of services. The scientific aspects of such a 

partnership will come to fruition only with a 

government commitment to funding public/ 

private sector collaborative research initiatives. 

Only with a new paradigm of the conceptualization of the public/private partnership in 

standards development and implementation and 

the meaning of quality assurance will we progress 

in our search for excellence in the delivery of 

services to persons with developmental disabilities 

and their families. 

183 
Accreditation Standards for Industries 

that Offer Competitive Employment for Citizens 

with Mental Retardation within Community Programs 

by C. Kaye Pearce 

Associate Director, Programs 

Commission on Accreditation of Rehabilitation Facilities (CARF) 

Tucson, Arizona

The very title of this presentation, one which 

probably would not have appeared on an agenda even 

five years ago, reflects the tremendous importance of 

the growing public/private relationship that has so 

increased employment opportunities for people 

with developmental disabilities over the past few 

years. The success of the supported employment 

effort which was initiated at the federal level and 

implemented at the state and local level has created an 

enthusiasm and zest in the field that has not been 

seen since the deinstitutionalization efforts of the 

last decade. 

Thousands of people with mental retardation 

who would have had, just a few short years ago, 

employment options with an N of 1 — sheltered 

employment — are now able to find their place in 

the world of work alongside workers who do not 

have a disability. The result — increased 

productivity; increased independence; and 

certainly increased opportunities for community 

integration. 

Along with the clear successes and positive 

outcomes, voices of concern have been raised 

especially by parents, advocates, community based 

providers, and others. The concern is not with the 

concept of supported employment or with the values 

that it upholds — rather the concern is one for the 

potential abuses of a capitalistic system ... wellknown abuses manifest in the phenomena from the 

sweatshops of the 1800's to the Ivan Boesky's of the 

1980's. 

For a profit oriented business, those 

businesses in which most people with mental 

retardation find employment, the basic focus 

of accountability is the bottom line — has a 

profit been turned? Fortunately, most such 

businesses also operate according to an industry 

code of ethics and according to federal, state 

and local laws and regulations. However, the sad fact is 

that there are businesses throughout this country that 

take every advantage they can of those they 

perceive as vulnerable including women, illegal 

aliens, the poor, and, yes, people with disabilities 

including those with mental retardation. And, as 

much as we hold community providers of supported 

employment in esteem for their accomplishments, 

just as there have been historical abuses in institutions 

and facility based programs, providers of 

supported employment are not immune to inept, 

insensitive, or at worst abusive staff. Given these 

concerns, it is necessary to look at accountability 

from the perspective of the needs of persons, with 

mental retardation who are working in a supported 

employment site. There are a variety of approaches 

that can be taken to the accountability issue: 

vigilance by managers of supported employment 

services, input from those served and their 

family members, and standards applied by third party 

funding agencies. 

Another option that more and more funders are 

looking to in terms of accountability for supported 

employment programs is independent third party 

accreditation. The value of using national 

accreditation standards for supported employment 

duplicate those that have motivated funding agents to 

use such standards in other program areas: 

independent, unbiased reviews; standards that are 

current and reflect a national consensus; enhancement 

of resources available for quality assurance; and cost 

effectiveness. 

In response to these concerns, the Commission 

on Accreditation of Rehabilitation Facilities 

established, in 1985, the first national standards for 

Programs in Industry which were standards for 

programs that were designed to 

184 
enable people with disabilities to obtain, retain, and/or 

upgrade employment in the community. In response 

to the constituency that is specifically concerned 

with supported employment, CARF subsequently 

developed standards within the category of 

Programs in Industry specifically designed for 

supported employment programs. 

The discussions among national experts that 

resulted in the supported employment standards 

reflected the need to have a system of accountability 

that was reflective of the needs of people with 

mental retardation but that were not so intrusive 

that the private sector would slam the door to such 

programs if CARF's standards were used. These 

discussions resulted in a consensus that certain issues 

must be explicitly addressed in the standards: 

 that those working in the private sector have every 

opportunity to be integrated into the community 

work setting 

 that the decisions affecting the person served be 

reflective of both the person's needs and desires 

 that there are a variety of activities that need to 

take place to assure that there is a common set 

of expectations on the part of the person 

served, the provider, and the private business 

 that knowledge of functional teaching techniques 

and behavior management are critical for staff 

who work directly with the person with mental 

retardation and the private 

 that training does not need to proceed 

placement 

 that assessment can take place on site and does 

not need to meet CARF's standards for vocational 

evaluation 

 that, where appropriate, the family is a part of 

the decision making process and receives ongoing 

communication from the supported employment 

provided regarding the employee's status 

 that appropriate follow-up services be 

provided 

 that, given the health and safety requirements that 

most businesses must now meet, issues of safety 

be approached on a "common sense" basis 

 that career ladders be a part of planning for 

individuals so that the supported employment 

placement is not viewed as "terminal," "the end 

of the road" 

Such discussions which shaped CARF's 

standards for supported employment reflect the 

unique three way relationship found in the 

supported employment environment: the person 

served/employee, the community based 

provider, and the private business. Each has their 

own needs, their own bottom lines. What 

accreditation standards strive to do is assure that 

a "win" ... "win" ... "win" situation is the 

ultimate outcome for everyone — 

The Employee:Work, Income, Status in the 

 Community 

The Provider: Work, Outcomes 

The Business: Productive Employees, Profits 

In our competitive society "win-win" is 

rarely the desired outcome. Yet the consensus of 

those who shaped CARF's standards for supported 

employment is that "win-win" is the only acceptable 

outcome — the only outcome that will assure that 

supported employment will continue to be a 

successful model. Perhaps the ultimate irony is that, 

as more and more people with mental retardation 

find competitive employment in the community, 

those who historically have been among the most 

devalued will demonstrate, as they become 

valued, productive members of our society, that 

the greatest successes of all come from cooperation, 

equitable human interaction, and respect for 

individual empowerment. 

RECOMMENDATIONS: 

1 Federal policy regarding supported employment 

needs to assure that accountability mechanisms 

for such programs are in place, including national 

accreditation. 

2. Federal policy for supported employment 

programs must not take the unidimensional 

approach of only providing fiscal incentives for 

one outcome — placement in community work 

sites, any community work site, for any wage, 

under any conditions. Quality of life issues 

including the desires of individuals served must 

be reflected in any definition of desired 

outcomes. 

3. Federal employment initiatives should 

provide specific funding to assure that job 

stagnation does not occur and that the concept of 

career ladders is built into supported employment. 

4. All Federal agencies must come together to 

resolve the current funding absurdities that exist. 

OSERS, ADD, Medicaid, SSA and others must 

evolve a policy that supports appropriate 

employment options for all people with 

developmental disabilities in non-institutional, 

community settings. 

185 
Health Care Panel

 MODERATOR: ALBERT L. ANDERSON, D.D.S. 

 PANELISTS: PHILIP R. ZIRING, M.D. 

MARY RICHARDSON, PH.D. 

GREGORY P. WEIGLE 

JUANTIA W. FLEMING, PH.D. 

GEORGE H. DANIELS 

186 
Dental Care for Persons with Mental Retardation 

by Albert L. Anderson, D.D.S. 

San Diego, California

Good Morning. During the last two months I 

have wrestled with myself as to the subject matter 

of presentation today, wondering whether I 

should be scholarly and give a lot of statistics or 

should I be straight forward and talk to you of my 

personal problem in attempting to provide dental 

service to persons with mental retardation (MR) 

in the community. Since my professional life has 

been mainly in private practice rather than 

teaching, I chose the second alternative to explain 

the problems as I have experienced them and then 

suggest some solutions. 

First of all, I question if the researchers and even 

many of the health planners and providers really 

believe that dentistry is part of the overall health 

plan for people with mental retardation. An example 

is the magnificent work done by Field, Smith and et 

al. They did a national profile on changes in services 

for adults with developmental disabilities. This 

extensive profile covers every aspect in the life of 

the adult person with developmental disabilities but, 

unfortunately, in their health summary they state "the 

most common health problems among the 

developmentally disabled population are seizures, 

skin disease, behavior problems, and obesity." Not 

one mention of dentistry in the report. You can 

eat a lot of steaks with seborrhea dermatitis, but; it 

becomes a real problem with chewing on any kind 

of steak if you have no teeth. 

I received a letter from an outstanding 

pediatrician who is also a Ph.D. and Director of the 

Pediatric Division of a hospital that is one of the 

largest in the United States. This was in regard to a 

child with mental retardation who was desperately 

in need of dental care. I requested the child be 

cared for under general anesthesia at that hospital. 

He stated, "The only way we could take care of the 

general anesthesia portion of this hospitalization is 

in conjunction with an overall medical problem." 

From this statement, it is quite obvious that they 

do not believe that oral pathology is considered to 

be a medical problem. 

A few years ago, a large hospital in the city near 

San Diego, California refused to schedule a dental 

patient with mental retardation because he was on 

Medi-Cal. Fortunately, I was a member of the 

State Health Commission at the time and had some 

background in the Hill-Burton hospital funding. 

This happened to be a community hospital which 

had benefited from Hill-Burton funds. I called the 

Executive Director of the hospital the next day and 

explained some of the rules and regulations of HillBurton funding — the fact that any Hill- Burton 

hospital should take care of the total community, 

not just those who are fully financed. He called me 

back and said that it was not really the hospital's fault 

but the anesthesiologist refused to take the case 

because it was Medi-Cal. I changed hospitals. 

This gives you some idea of some of the 

hospital's and some physician's attitudes toward people 

with mental retardation, especially if they are on 

the Medi-Cal Program. But what about the dental 

provider? 

At the present time there is a class action suit 

going on in the State of California. Although I'm not 

fully acquainted with the details, the media stated that 

only 12% of dentists in the state will accept a new 

Medi-Cal patient. I would suggest to you that when 

the patient has mental retardation this drops down to one 

half that percentage. In my own area we have about 20 

pediatric dentists and I know of only 2 or 

187 
3 who will accept new Medi-Cal patients. My 

staff spends about 20% of its time trying to find 

oral surgeons, endodontists, periodontists who will 

take care of people with mental retardation. 

To let you know where I am coming from let 

me tell you a little bit about myself so that you 

know that I am not some wild-eyed rebel rabble 

rouser but that I have training as a pediatric dentist. 

I have been the National President of the American 

Society of Dentistry for Children, National 

President of the American Academy of Pediatric 

Dentists, International President of the Consejo de 

Panamericana de Otologia Infantil which covers all 

of North and South America. My practice is about 

80% exceptional people. In fact I have 365 

people in my practice who have Down syndrome. 

As a consequence, my practice is about 80% MediCal, Medicaid, CCS, Regional Center, SSI, and 

SSDI. All of these programs are based on MediCal 

fees which are about one-eighth to one- third of 

the regular fee charged in the average dental office 

in the State of California. I tell you this because I 

did not want you to think that dentists are all bad 

people with no love for their fellow man. In 

essence, there is no way that a young man with a 

family and the cost of starting a practice can 

afford to care for the Medi-Care patient in the State 

of California. The delivery of care is not the total 

fault of the profession nor is it all on the part of the 

individuals who administer the State and Federal 

programs. The main culprit of poor or no dental 

care for persons with mental retardation is the fee 

schedule and the bureaucratic mumbo-jumbo that 

lays down the rule of care. 

The biggest problem we find is good oral 

hygiene. They should have a good dental 

prophylaxis every four to six months, the rule says 

once a year. Many of the young people have deep 

calculus in need of special scaling. Rule — no one 

under 18 years of age can have a scaling because 

scaling doesn't occur on teeth if a person is under 

18 years of age. Another problem, an adult is 

missing a front tooth and no way to get funding for 

a bridge. The patient will not wear a partial. So I 

make an inexpensive space maintainer that is 

attached to the back teeth with a wire that runs 

around behind the upper front teeth and then attach a 

false tooth onto that wire. It is then completely 

cemented in and gives the patient a nice smile and 

holds that space. The rule — no one over 12 can 

have a space maintainer. I have a lot of group homes 

I care for with non-ambulatory patients. There are 

usually 6 youngsters to a home. I make house calls 

to these homes for their yearly exams so they don't 

have to come into the office. They usually have to 

be trans- ported by ambulances which are a very 

expensive affair for the State. The rule — if you 

make a house call you are only paid for the first 

person you examine which is $18.00. The others are 

on the house, free-of-charge. 

If I have a patient who is manageable enough 

to do a small filling in the office, but still cannot 

hold still for x-rays, the rule says that they cannot 

pay for the filling without x- rays, but we can 

hospitalize that patient, put him to sleep, do x-rays 

and one filling. The cost to the state is about 

$1,018.00. Of that I am reimbursed approximately 

$25.00. The rest goes to the hospital and a pittance 

to the anesthesiologist. 

Sometimes, for some unknown reason, you are 

lucky enough to get an O.K. for a bridge or a 

ceramco crown on one of your special patients. 

You spend two hours in the hospital with two of 

your own assistants working. They pay about 

$125.00 per tooth. I have to pay the lab bill of 

$100.00 then go back to the hospital once again for 

another one hour session to cement the crowns in a 

period of one month. So actually what we are doing 

is subsidizing the State for doing dental care. 

There are thousands and thousands of other 

problems and I can assure you that this is not only a 

problem in California, but is true throughout the 

United States. I am getting old, but I can't find 

anyone who wants my practice. I am sure the 

medical and dental care will become a major 

deterrent to community care in the next two 

years. But all is not bad. There are some bright 

spots on the horizon. First, we have in the United 

States today a small cadre of dedicated people who 

care for people with mental retardation in the 

community. We have many in our town. I would 

like to give you an example of two. First, Rita Sexton 

has a six-bed facility in her home for nonambulatory children. Rita lives and breathes for her 

kids and I know that on many occasions gives her 

own funds for things that she feels are important to 

her children that the State will not provide. I drop 

in anytime and the children are always immaculate, 

well nourished, and with a look of really tender 

loving care. And I tell you if I'm not there at the 

right time to check their teeth each and every year, 

she is on my back requesting that I immediately 

come in. When she first got the children, we were 

doing at least two per year in the hospital. These 

youngsters change as they get older and move onto 

other facilities so it is not the same six people that 

we see all the time, but right now I have not had to 

care for any of her children in a period of two years. 

The reason for this is that she is doing a good job of 

oral hygiene with them. 

188 
Secondly, I would like to talk about 

Children's Convalescent Hospital. It has 60 beds, 

all non-ambulatory. When I first started working 

with Joyce Turner 20 years ago, the average was 

about 15 hospital cases every year. I just finished 

examining all 60 and none will have to be 

hospitalized at this time. Why? Because both 

facilities have well trained personnel who believe 

good oral hygiene is tantamount to good health. 

The saddest people I have are the small sixperson group homes for adults who have just 

returned to the community from large 

institutions. These are all ambulatory adults. In 

almost all cases, we find missing teeth, periodontal 

disease, rampant caries, and a terribly poor oral 

hygiene program. The following is a good 

example of what can be done. There is a home in 

Alpine, California about 30- 40 miles from San 

Diego where I provide dental care. In one year's 

time this fine couple has transformed a wandering, 

non-caring mass of humanity into a warm, loving 

family. The oral hygiene has changed in the same 

direction. The large facility had warned this couple 

about one of the gentleman who was to be 

stationed in their home. He's 42 years old. They 

said that he deficated in the corner, urinated on the 

furniture, was terribly combative and that it was 

absolutely impossible to brush his teeth. I met him a 

year ago and I agreed. We had to do him in the 

hospital. I saw him again a month ago. He gave me a 

hug. He is going in the potty and brushing his 

teeth at least three times a day. 

I hope with these examples you are beginning to 

understand the problem we have right now in the 

United States. I'm telling you that without proper 

dental care for the six million persons with mental 

retardation we have in the U.S. today, we will 

certainly move back to the days when the usual 

treatment for a carious tooth, in a person with 

retardation was removal. 

We have a problem now but what is going to 

happen in the next few years? The institutions are 

cutting back and three to six thousand new people are 

added to the community each year. Every five 

minutes in the U.S. a child with retardation is 

born and now it appears that this number could 

even become higher with the fetal alcohol 

syndrome, drug abuse, and a statement made by 

Duane F. Alexander, M.D., Director, National 

Institute of Child Health and Human Development, 

National Institute of Health at the PCMR's Prevention 

Conference of February, 1987, that in the early statistics, it appears that 90% of women affected by the 

AIDS virus who became pregnant will deliver a 

child with mental retardation and/or developmental 

disabilities. We all admit that prevention is the 

answer, but what are we going to do right now? 

We have been talking about individuals who 

live in well-staffed group homes or small 

community facilities. What about the people who 

live in independent housing and those thousands that 

live on the streets that we now know have a high 

percentage that are dually diagnosed, i.e., mental 

retardation and mental illness. If it is so difficult to 

have good dental care for those who have good 

social service, think of the bureaucratic obstacles 

facing those who are on their own. 

There are those in government who would like 

to contract to take care of all individuals with 

mental retardation in a massive H.M.O. type clinic 

I say no. Contract clinics stay in business by not 

seeing patients. They are paid so much per capita 

each year whether the patient makes an appointment 

or not. Secondly, they must produce on a volume 

in order to stay in business. 

Both of these concepts are in direct opposition 

to good care for people with retardation. A lot of 

us are here today because we believe a community 

setting is the best place for most people with mental 

retardation, integrating them into schools, 

affording them opportunity to meet "normal" 

people, and make them a part of the community. I 

think the private dental office is one of those 

teaching tools. In our office we do not separate our 

appointments. A good example is a wife of a 

prominent orthopedic surgeon at Scripps Clinic in 

La Jolla. They have seven "normal" young children. 

She says, "My children have never had a better 

learning experience than they have in your office. 

They now know and understand persons with mental retardation and hopefully our children will be 

much better members of the community because of 

this experience." 

I have several suggestions for change: 

1). Medi-Care, Medi-Cal, SSI need to be 

reformed. Medical care should be extended to 

all people in the eighteen to fifty- five age 

range who are developmentally disabled, 

mentally retarded, children or elderly. This 

they say is impossible because it discriminates 

against the 18 to 55 year old. I think there 

should be some change in that law. 

2). Provide a funding program for dental hygienists 

to set up oral hygiene programs for all 

community facilities throughout the United 

States. Have them go into the facilities, do a 

six-month recall, clean their teeth, therefore, 

setting up oral hygiene programs that could 

alleviate many of the problems that we see in the 

office. 

189 
3). Make some good oral hygiene video tapes 

featuring persons with mental retardation, stressing 

brushing, rinsing, good nutrition, so they can be 

played every few months for the staff of the 

facilities. 

4). Have the U.A.P. go back to one of their charges 

under public law 19583 to train personnel for 

community facilities. It was one of the major 

topics in our joint mental retardation—mental 

health meeting that the PCMR held two years ago. It 

was emphasized that in many community facilities 

we had entry level people providing care. It 

does seem ridiculous that we have entry level 

people taking care of these special individuals with 

the most complex social and health problems 

known to man. The owners of the facilities always 

say that it is funding. If this is so, we must increase 

that funding to ensure a more helpful atmosphere. 

5). Dental schools must provide more training in the 

care of persons with mental retardation. Without the 

help of the dental profession we absolutely have 

no hope. 

Let me thank you for letting me talk with you today, 

but I would be remiss in concluding my remarks 

without thanking all of you who take care of people 

either in institutions or in community facilities, for 

your dedication, self- sacrifice, and devotion. All of 

you give to people who are mentally retarded. 

Whether you be parent or staff, there is no other 

calling on this earth that gives so much with so 

little thanks. You are a very special breed of human 

beings and I for one am honored to be able to work 

with you on a daily basis. 

190 
Health Care for Persons with Mental Retardation 

Living in the Community: Addressing the 

Gaps and Fragmentation in Services 

by Philip R. Ziring, M.D. 

Chairman, Department of Pediatrics 

Pacific Presbyterian Medical Center 

San Francisco, California

BACKGROUND 

Surveys of consumers, community agencies and 

state and local governmental units confirms the 

widely held impression that the delivery of 

comprehensive health care services (medical, 

surgical, psychiatric, dental, etc.) to persons with 

mental retardation living in the community has not 

kept pace with advances being made in other areas 

of human services. 

While great strides have been made in 

development of community living arrangements, 

special education services, supported employment 

and similar areas since the major efforts at 

deinstitutionalization began, there is yet to be 

developed a response by our nation's health care 

establishment to the special needs of persons with 

mental retardation. In many cases an absence of 

appropriate health services in the community has 

precluded the transfer to the community of persons 

still living in public residential facilities (especially 

persons considered "medically fragile" or 

behaviorally impaired) or has necessitated the 

institutionalization of an individual who has grown 

up in the community. 

Perhaps in very few other ways can PCMR be 

more helpful in influencing Federal policy makers 

and legislators on issues relating to community 

integration and fostering partnerships among all 

segments of our society than in helping to bring 

about a more rational and carefully thought out 

policy on health care for this extremely vulnerable 

and medically complex population. The present 

reliance on the system of generic health care services 

available in most communities is just not working 

in anything like an optimum fashion. The reasons 

for this are multiple and include insufficient 

training and experience with persons with mental 

retardation by the majority of physicians and 

dentists practicing in the community, the impatience 

and difficulty of individual physicians interacting 

with a large bureaucratic system of multiple 

agencies, and the real disincentive represented by 

the medical reimbursement scheme (principally 

Medicaid) which sets fees which are far lower 

than other third party health insurance payors. 

The author proposes the development of a 

system of regional health care resource centers to 

be located in major community/university hospitals 

modeled after a prototype in existence in 

Morristown, New Jersey since 1982. Such centers 

would provide the full range of general and 

specialty health care services which children and 

adults with mental retardation require and would 

provide back up services to practicing physicians, 

dentists and other human service agencies in the 

community. 

Patients with especially complex handicapping 

conditions could come to such centers for 

coordinated, comprehensive treatment of medical, 

surgical, psychiatric and dental conditions, while the 

centers would act as a resource for medical 

education for medical students, residents and 

community practitioners. Funding for such centers 

would be based on a supplement to existing 

Medicaid reimbursement to offset the cost of 

telephone consultation and follow up, prevention 

services, outreach, education and other client 

contacts not involving a "patient visit" and therefore 

not reimbursable by the usual insurance mechanism. 

Such supplementation could take the form of special 

contracts, higher Medicaid reimbursement rates to 

the hospital program or other measures which 

would underwrite the support of such regional 

programs and guarantee their viability. 

191 
FEDERAL/STATE PARTNERSHIP 

Federal policy and legislation should see to the 

development of a nationwide network of 

community/university hospital based regional health 

care centers in every state, based on populations of 

persons at risk, and should provide incentives for the 

states to develop such programs based on local 

needs and health care patterns. 

STATE/LOCAL PARTNERSHIP 

The states, through their governmentally based 

developmental disabilities agencies and health 

departments, would promulgate guidelines for 

establishment and operation of such regional health 

care resource centers and contract with qualified local 

community/university hospitals in the private or 

public sector for such services. 

PUBLIC/PRIVATE PARTNERSHIP 

Though the core costs of the center should be

underwritten by public agencies in State and local 

government, the local hospital program may 

expand the basic nature of its program to provide for 

special services unique to its setting. 

It may gain support for these special endeavors 

through charitable foundations, local industry, 

private agencies (such as Association for Retarded 

Citizens', United Cerebral Palsy, etc.) as well as 

through traditional third party health insurance 

companies. 

FAMILY/SERVICE DELIVERY SYSTEM 

PARTNERSHIP 

Families of persons with mental retardation will 

be among the principal beneficiaries of such a 

system. A regional health care center that 

coordinates all necessary medical and dental 

services, and provides high quality, responsive care 

in a cost effective manner is currently lacking from 

the case management system. It will relieve a 

considerable degree of anxiety on 

the part of parents as to who will take responsibility 

for their family members with mental retardation 

when they are no longer able to care for them, 

and will help them negotiate the difficult and 

complex health care system looking for the doctor, 

dentist, or hospital that can address the health care 

needs of a patient with mental retardation in a 

competent and dignified manner. 

192 
Planning for Children and Adolescents 

Who are Mentally Retarded and Have 

Substantial Medical Needs 

by Mary Richardson, Ph.D. 

Child Development and Mental Retardation Center 

University of Washington 

Seattle, Washington

Increased community integration opportunities 

during the last two decades have enhanced the lives 

of many people who are mentally retarded. 

People for whom community living opportunities 

are less available include children who are mentally 

retarded and who have substantial medical needs. 

There are a number of reasons why children who 

are mentally retarded may have substantial medical 

involvement. Prematurity, congenital anomalies, 

birth trauma, or postnatal events, coupled with the 

increased likelihood of survival are causes for 

increasing numbers of children in this population. 

Other children may have multiple disabilities, 

including substantial medical complications, as a 

result of trauma or injury. 

Medical needs play a central role in placement 

decisions for these children. Infants who are born 

with severe and multiple disabilities, including 

medical complications, may live for an extended time 

in hospitals. When released, they may not be able 

to go home to their natural family; they may be 

placed in foster care or adoptive homes. In 

addition, institutionalization rates are increasing for 

children under two years of age. 

The capacity of families to cope with the 

complex needs of a severely and multiply disabled 

child varies substantially. Families are at high risk 

for "burnout" due to isolation and the tremendous 

demands that are placed on family resources. 

Support needs vary and, in all too many instances, are 

inadequately attended to. Institutionalization may 

appear to be the only viable option to many families 

when little else seems to be available. Once their 

child is placed in an institution, the strongest 

predictor of willingness to support community 

placement efforts is the family's perception of 

medical need. 

Thoughtful attention must be given to children 

with mental retardation with complex medical needs 

as a part of State and national planning. Definitions 

for use in planning for this population were 

developed in the State of Washington and are 

presented in this paper. The recommendations will 

be discussed and presented. 

I. Introduction

The last two decades have been a time for 

considerable advances in the national effort to assure 

people with mental retardation the right to live in the 

least restrictive environment. Such an environment 

promotes a person's growth, developmental skills 

and social integration in community life. While the 

principal residence of people with mental 

retardation continues to be their own home (Meyers 

and Blacher, 1987) there has been a substantial shift 

in regard to living in other types of residential 

settings. 

The number of people living in institutions is 

declining although the rate of decline has slowed. 

The movement out of large institutional settings 

and into smaller, community- based service 

networks has occurred in stages. Individuals who 

were relatively self-sufficient and problem free 

were chosen first for alternative placement. While 

severe and profound mental retardation is found in 

less than 5% of the entire population of mentally 

retarded individuals, it is estimated that about eighty 

percent of public institution residents are severely 

or profoundly retarded (Eppel, Jacobson and 

Janicki, 1985). 

193 
People residing in institutions are more likely 

to have significant medical complications in 

addition to the cognitive impairment. The more 

severe levels of mental retardation are primarily a 

result of brain damage, chromosomal abnormalities 

and other neurobiological factors (Dingman and 

Tarjan, 1960). Hence, there is an increased 

incidence of medical problems (Wright, Valen & 

Tarjan, 1962) and higher mortality rates among 

people living in institutions as compared to those of 

the general population (Tarjan, Wright, Eyman & 

Keeran, 1973.) 

Substantial efforts to prevent institutionalization 

have also contributed to the declining numbers of 

people residing in institutional settings. As our 

knowledge and ability to establish community based 

alternative residential options for people grew, it 

became apparent that community equivalents to 

institutional settings can be created for the vast 

majority of people. Hence, national and State 

policy has often been directed towards the 

creation of community alternatives as a means of 

preventing institutional placements. 

Under the Reagan Administration, the development of a Medicaid Waiver program is a good 

example of a Federal/State partnership which is 

intended to ensure people with disabilities the 

option to live in the least restrictive environment. 

This program enables states to request the option of 

utilizing funds authorized under Title XIX of the 

Social Security Act (Medicaid) for the purpose of 

developing community placements as an alternative 

to institutionalization. 

Significant medical complications accompanying 

mental retardation are a major concern in planning 

residential environments and other services for 

children and adolescents. This paper will address 

policy and planning issues and recommendations 

specific to children and adolescents typically 

referred to as "medically fragile" although new 

terms will be introduced. A definition for use in 

statewide planning for people of all ages, developed 

by a group in the State of Washington, will be offered 

and used to more clearly identify the population 

under discussion. 

II. Overview of the Issues

The development of alternatives for children 

and adolescents which enable them to live in their 

own or another family has been of particular 

concern. As a result of successful community 

integration efforts nationwide, many more children 

and adolescents with disabilities remain at home. 

Foster care as a residential alternative for children 

with special needs has grown exponentially during 

the past five years and continues to be viewed as an 

important alternative to placement in an institution 

when children are unable to live with their own 

families. The adoption of children and adolescents 

with a wide range of disabilities is on the increase. 

Despite successful efforts to keep children and 

adolescents in families and out of institutions, one 

of the more challenging dilemmas is planning 

services for children who are mentally retarded and 

have substantial medical problems. The number of 

children with significant medical problems are 

increasing in general. 

The survival rates of infants born prematurely 

or with other birth trauma has increased. Survival is 

enhanced due to major transformations in medical 

technology, such as the development of oxygen life 

support systems, intravenous methods of nutrition, 

vital function monitoring devices, and new 

antibiotics or other drugs. While the vast majority 

develop normally, a small percentage experience 

major developmental problems. As the sheer 

number of babies who survive increases, so does 

the number of babies who ultimately experience 

major difficulties. 

Children and adolescents who require a 

medical device, such as a ventilator, to compensate 

for the loss of a vital body function, (children 

described as technology dependent), are increasing 

in number. The office of Technology Assessment 

estimates that there are up to 17,000 children, 

although not all are mentally retarded, who depend 

at least part of each day on a ventilator, intravenous 

nutritional substances or other medical equipment. 

The estimate is greatly expanded if children who 

require apnea monitors to ensure they are 

breathing, or who need renal dialysis as a result of 

kidney failure, urinary catheters, colostomy bags or 

substantial nursing care are included. 

Advances in technology have affected the 

survival rates of those who have severe disabilities as 

a result of environmental events such as trauma. For 

example, a number of children and adolescents with 

severe and multiple disabilities are survivors of 

accidental drowning, vehicular accidents or other, 

similar trauma. 

The medical needs of children who are 

mentally retarded play a central role in determining 

placement in or out of institutions. Findings of a 

study by Seltzer and Krauss (1984) suggest that 

placement decisions for children who cannot live at 

home are increasingly being affected by medical, 

even more than behavioral, factors. An alarming 

trend, despite efforts to reduce the institutionalization 

of children is the increase in placement of children 

under the age of two in selected institutions 

(Eyman, et al, 1986). 

194 
Readmission rates, higher among all people with 

significant medical problems (Keyes, Boroskin & 

Ross, 1973; Pagel & Whitling, 1978), reveal a 

significant number of young people of school age 

returning to institutional settings (Bruininks, et al, 

1981). In a study of community placements out of 

institutions for 761 children by Seltzer and Krauss 

(1984), only 6.6% returned to natural families. A 

significant factor was the degree of medical 

involvement. 

Nationally, the services which are generally less 

likely to be available to all people with more 

severe disabilities are educational/adult day 

programs, medical care and behavior management 

programs (Sheerenberger, 1981). These services, 

particularly medical care, are critical for successful 

community placement of children who are multiply 

and severely disabled, including substantial 

medical involvement. 

General medical hospitals, including childrens 

hospitals are another intensive care environment in 

which children who are born mentally retarded and 

with significant medical problems are likely to live 

for extended periods of time. If they are unable 

to go home with their families when they leave 

the hospital and no other alternative is available, 

they may be placed in public or private institutional 

settings including nursing homes and large State 

funded mental retardation facilities. 

III. Effective Service Planning

A. PARENT/SERVICE DELIVERY 

SYSTEM PARTNERSHIP 

There are a number of decision factors which 

enter into planning which determines where a 

child or adolescent will be able to live. An 

important partnership for successful planning for 

children who are mentally retarded and have 

substantial medical problems is between the family 

and the service delivery system. The impact on 

families of the birth of a multiply disabled child 

with critical medical needs is substantial (Thomas, 

1986) and their ability to meet the complex care 

needs of their child are limited without adequate 

support. Supports to families keeping their child at 

home are sometimes the most difficult to obtain. 

Care decisions, including placement, must truly 

reflect the spirit of partnership between the family 

and the care providers. This is especially true as 

children make transitions — from home to school; 

from school to work; from home to another 

setting; or between settings other than the family 

home. Parents, especially those who have made the 

very painful decision to place their child out of their 

home, need understanding and an opportunity for 

meaningful involvement in all decisions regarding 

the care of their child. 

Transitions from an intensive care environment, 

such as a hospital or institution, back to the family or 

a foster care home are especially sensitive. When a 

person has been placed in an institution there is 

generally high parental satisfaction with the 

placement. Payne (1976) iterated several reasons 

for this satisfaction including the permanency of the 

institutional placement and the availability of 

multiple specialists. 

Keating et al (1980) found the strongest 

predictor of family opposition to placement outside 

the institution was the family's perception of the 

degree of need for medical care. Conroy (1985) cites 

serious discrepancies between the perception of 

families and care providers, with families perceiving 

more intense medical needs. However, we must not 

overlook the ability of parents to recognize subtle 

signs and have a special understanding of their 

child. 

B. EFFECTIVE USE OF EXISTING 

SERVICE RESOURCES 

The factors which contribute to the intensity of 

medical needs are complex and unique to the 

individual Planning must consider the optimal 

living environment as well as the availability of 

needed, often expensive, medical care resources. 

Medical care needs are, by themselves, complex. 

They are further compounded by cognitive and 

developmental impairments. 

Deciding which settings are most appropriate 

and successful for children and adolescents with 

multiple and severe disabilities, particularly those with 

the most intense medical needs, is challenging. The 

quality of care which is provided to each child is 

dependent upon the quality of the caregiver more 

than the setting in which it is provided. Thus 

placement decisions, regardless of setting, must 

carefully attend to all the care needs, especially the 

medical care. 

If children with intense medical needs were able 

to communicate how they are feeling or what is 

happening to them, they would be better able to 

participate in quick, appropriate intervention at the 

time of a potential crises. However, severely 

disabled children are least able to communicate 

their physical needs and problems. Hence they 

depend on attentive, well trained care givers to 

assess their physical situation and stand ready for 

quick, appropriate intervention. 

What remains to be determined is what options are 

available. The current service system includes an array of 

residential options that range from living at home to 

alternative family placements such as foster care or 

adoption, to congregate living environments both small 

195 
and large. The intensity of services provided in 

those environments, and the availability of 

medical care, varies substantially as does the degree of 

integration with normal family and community 

life. 

In the best of all possible worlds, every child 

would live at home and that home would be loving, 

caring and supportive. Sometimes, even the most 

loving and caring parents are unable to cope with the 

complex needs of their multiple and severely 

disabled child on a day to day basis. In other 

instances, families simply don't provide a nurturing 

environment. 

In order for a child with complex and multiple 

problems to live anywhere, there must be an 

assessment of potential risk. Often, there is a lack 

of medical specialists trained in the care of 

individuals who are severely and profoundly 

mentally retarded. It may even be difficult in some 

communities to find a provider, whether 

appropriately trained or not, willing to serve that 

individual at all. This is especially problematic in 

smaller communities with fewer health care 

resources of any kind. 

Equally important is the capacity to develop 

satisfactory support services in a way that contributes 

to greater integration for the child or adolescent 

rather than hampering it. Children need access to 

educational, social and spiritual opportunities. Their 

families and caregivers must have in-home 

supports, respite care and other similar support 

services which allow them to meet the potentially 

intensive demands. 

All too often, family based services are not only 

viewed as the healthiest environment for children 

and adolescents, it has the potential for being 

cheaper. The reason families can provide less 

expensive services is that they often provide free 

round the clock monitoring and care in lieu of 

paid staff. As a result, families are liable to burn 

out or, at the very least, be substantially limited in 

participating in normal life events. Under these 

circumstances, children (and their families) are far 

more isolated than they might be in many congregate 

care environments normally seen as "isolating" and 

restrictive. 

.

Children who are the most profoundly retarded 

and with very demanding medical needs are perhaps 

the most difficult to plan for. Home care requires the 

creation of an intensive care environment in the 

family home. In those instances when doing so 

enables a child to benefit from enhanced social, 

recreational and spiritual opportunities the effort can 

be justified. However, when a child's disabilities are 

so profound and complex as to significantly impair 

his/her capacity for greater integration regardless 

of where he/she lives, the impact must be carefully 

evaluated. 

A child with no observable environmental 

awareness, who requires intensive round-the- clock 

medical care, is likely to be isolated in any 

environment regardless of the quality of care 

provided. The real outcome of home placement may 

be disruption and isolation for the family with 

little or no benefit to the child. Some health care 

specialists would argue that there are still a few 

children who are likely to live longer in a more 

intensive care environment and that placement out 

of an institutional or intensive care setting creates a 

risk to the child's survival. 

Further, in a time when many people who are 

mentally retarded receive few or no services, the 

allocation of resources must be thoughtfully 

considered. Planners find themselves faced with 

difficult resource decisions. They must consider the 

allocation of limited resources to more and, perhaps, 

more expensive services for people with complex 

problems while the service system remains 

unresponsive to many others with less immediate 

needs. 

The decision making, therefore is complex. Each 

child and family is unique and with their own needs 

and desires. The availability of resources, and the 

conditions under which they are accessible, is another 

significant issue. Our capacity to effectively design 

the ideal option for each individual, while 

advancing rapidly, still has a ways to go. The 

dilemma that remains is to develop a flexible and 

responsive system of services, which builds upon all 

the resources that are available and uses them 

creatively. This was certainly the challenge in 

Washington State and prompted a statewide study 

of people who are mentally retarded and have 

substantial medical needs. 

IV. Identifying Individuals Who Are Mentally Retarded and Have Intensive Medical Needs.

Managers in the Division of Developmental 

Disabilities in Washington State were concerned with 

developing an effective planning process for 

addressing the needs of individuals with severe and 

multiple disabilities. An important part of the 

planning process was the development of 

definitions which could be used for broad planning 

purposes. The definitions, once developed, allowed 

for a general assessment of which people, currently 

residing in State operated institutions, nursing homes 

and/or other hospital-like settings, are good 

candidates for immediate community placements 

and which individuals might be able to live 

comfortably in a community placement if more 

supports and services were available. (This, 

however, does not preclude the need for careful 

individualized planning in all placement decisions.) 

196 
The definitions developed in Washington, 

although applicable to children and adults, will be 

used in this paper to provide a common understanding of who we mean when we talk about 

children who are mentally retarded and have 

significant medical complications. The definitions and 

the process by which they were developed will be 

presented. 

A. DEVELOPING A DEFINITION FOR 

STATE PLANNING PURPOSES 

The approach taken by the Division of Developmental Disabilities truly reflected a State and 

local partnership. Participants of the statewide 

planning group included parents of children with 

multiple handicaps, developmental pediatricians 

including two who were based at a State facility 

serving people with intense medical needs, a 

pediatric nurse, staff from a State facility and the 

State Division of Developmental Disabilities, a 

specialist in service systems for persons with 

chronically handicapping conditions, and a social 

worker. It was recognized that defining medical 

need focused on only one aspect of a person's life. 

Therefore another workgroup concurrently 

addressed other important needs such as 

educational, social and environmental. 

Participants in the "definitions" workgroup 

expressed concern about the use of the term

"medically fragile". They felt it was depersonalizing to the individual to whom it was 

applied. Hence a new term, persons with intense 

medical needs, was utilized initially the workgroup 

developed only one definition, which was for 

individuals with "intense medical needs" As the 

definition was tested at various sites, it became clear 

that there was one additional category. 

Originally, it was assumed that an individual 

would fall into the "intense medical needs" category 

or would not. What the group learned was that a 

person could have very demanding physical 

problems but not fall into the "Intense" category. 

Rather, their needs were such that a lack of 

appropriate medical and nursing care would cause 

them to decline and they would ultimately require 

"intense medical care". 

Once definitions were developed, a group 

composed of a developmental pediatrician, a social 

worker, a parent and the systems planning specialist 

visited two other State Schools and the Regional 

Community Services office in a highly populated 

area in the State. The person responsible for each 

individual's medical care at each site was included 

in the review of the individual's chart. 

Records of all individuals with significant 

medical problems were evaluated and the relevance 

of the definitions tested. Modifications were made to 

the original definitions as the process went on. The 

findings supported the use of the definitions that 

were ultimately developed for planning purposes. It 

must be strongly emphasized that these definitions 

cannot be viewed as diagnostic tools nor do they 

substitute for the professional judgment of trained 

medical personnel in determining appropriate 

services for any given individual. 

It is important to note that the definition for 

Individuals with Intense Medical Need was 

substantially influenced by the excellent work 

already done by a national organization for 

children — Sick Kids (Need) Involved People 

(SKIP). The categories ultimately developed and their 

definitions are as follows: 

I. Individuals with Intense Medical Needs 

Individuals whose chronic health related dependence continually or with unpredictable 

periodicity necessitates 24 hour/day skilled health 

care supervision and the ready availability of skilled 

health care providers for the individual's survival. 

Further, if the technology, support and services being 

received by the individual are interrupted or 

denied, he or she may, without immediate health 

care intervention, experience irreversible damage 

or death. 

Further elaboration of key components: 

a. Chronic Health Related Dependence: 

Ongoing vulnerability to an individual's 

physical health. 

b. 24 Hour/Day Health Care Supervision: 24 hour 

basis observation by skilled health care 

providers who are within sight and/ or sound 

of the individual being monitored 

c. Skilled Health Care Providers: Licensed 

health care providers (e.g. nurse, physician); 

Specially trained family members 

knowledgeable in the care of the specific 

individual (The specially trained family 

member in this context is described in 

Washington State Statute) 

d.Immediate Health Care Intervention: 

Skilled health care assistance or treatment 

necessary to prevent death or damage to 

individual. Chronology of the need for 

treatment must be unpredictable. 

II. Individuals at Risk for Medical Vulnerability 

Individuals whose chronic health related dependence 

does not require 24 hour supervision by skilled health 

care provider, but for whom life threatening incidents 

are unpredictable. Without regular monitoring and the 

availability of licensed providers, deterioration 

197 
will be such that the intensity of medical needs will 

increase. 

III. Individuals With Significant Medical Needs 

Individual whose chronic health related 

dependence is predictable but necessitates regular 

monitoring by licensed health care providers. 

The following descriptions are composite of 

people characterizing individuals who fall into each of 

the categories addressed by the planning 

definitions. They are not all inclusive and are meant 

to assist in a better understanding of the nature of 

the categories: 

INTENSE MEDICAL NEEDS 

Art is a young man of 14 whose medical 

complications typify individuals who fit in this 

grouping. He has a mixed type of cerebral palsy, 

scoliosis, microcephaly, and profound retardation. 

In addition, Art has complications associated with 

feeding, such as severe reflux, causing aspiration 

pneumonia and secondary acute respiratory distress. 

Severe feeding problems which lead to malnutrition 

require rigid monitoring. In addition the inability of 

Art to handle oral secretions exacerbates the 

problems of aspiration. Daily monitoring of 

medication and possible alterations are also 

required. Art requires total care as regards feeding, 

dressing, bathing, toileting, turning and positioning. 

AT RISK FOR MEDICAL VULNERABILITY 

Paul is a 10 year old boy who is nonambulatory, microcephalic, and blind. He has a 

seizure disorder. In addition, he has a problem with 

emesis after eating and bruxism (teeth grinding) 

which the staff has not been able to fully control. 

Paul has a moderate-severe hearing impairment and 

his left arm is in a splint. He needs careful 

monitoring of his nutrition, feeding and seizure 

problem. Without monitoring he may experience 

weight loss and poor nutritional status, and/or an 

increase in seizures which at times, can be life 

threatening. Paul requires total care as regards 

feeding, bathing, toileting, turning and positioning. 

SIGNIFICANT MEDICAL NEEDS 

Brenda is a 3 year old girl who is blind and 

profoundly retarded. She has cerebral palsy and is 

non-ambulatory. Because of her inability to move 

and turn herself she needs regular positioning to 

prevent bed sores and severe contractures. In 

addition, her lack of mobility causes Brenda to be 

predisposed to respiratory infections and thus, 

requires careful monitoring in order to prevent 

pneumonia and other, similar complications. 

The study completed in Washington State 

underscored the notion that most children and 

adolescents now living in intensive care 

environments including institutions, can live — albeit 

at higher risk in some instances — in smaller 

alternative residential settings including natural 

homes, specialized foster care settings, adoptive 

homes, and group homes. The study team visited 

institutions, nursing homes, foster care homes, 

group homes and families who cared for their 

own child at home. Children from all definitional 

categories were found living in all the residential 

environments we visited. 

V. Recommendations 

RECOMMENDATION I. PLACE A HIGH 

PRIORITY ON PREVENTING INSTITUTIONALIZATION, INCLUDING 

MINIMIZING A CHILD'S STAY IN GENERAL 

MEDICAL HOSPITALS SUCH AS 

CHIIDREN'S HOSPITALS 

In order to prevent children and adolescents 

from institutional placement several things need to 

happen. 

1. Financial incentives need to line up with 

philosophical goals 

Fiscal structures which support programs are 

complex and, all too often, counterproductive to 

the philosophical goals of creating a more normal 

life experience for individuals regardless of their 

disability or handicapping condition. Families of 

children with intense medical needs or who are at 

risk for medical vulnerability are often dependent 

on Federal insurance programs and/or other third party 

reimbursement to pay for care. The condition of 

reimbursement may be living in an institutional/ 

hospital-like setting. 

The proposed Federal Medicaid Home and 

Community Quality Services Act Of 1987 which is 

designed to amend the Title XIX Medicaid 

program is an excellent example of Federal/ State 

partnership which will assist people with disabilities 

in maintaining maximum potential for 

independence. As it stands now, financial resources 

may be substantially limited or even curtailed when 

an individual leaves an institutional setting to go 

home or into a foster care situation unless special 

waivers are obtained. 

Linda and Tommy, who live in Washington, are 

examples of this quixotic situation. Both children fit the 

definition of "Intense Medical Need". Linda is two and 

now lives with Mr. & Mrs. Ross, a foster family, having 

moved recently from the Children's Hospital. Linda is 

eligible for the State's Medically Intensive Home Care 

program, a Title XIX waiver program which 

198 
provides special services in an effort to maintain 

individuals in community environments. 

Tommy also lives with Mr. & Mrs. Ross but is 

not enrolled in the Home Care program. Linda 

receives sixteen hours a day of federally and State 

funded nursing services in the foster home while 

Tommy, who needs oxygen regularly, does not. In 

theory, the nurse caring for Linda must not care for 

Tommy even though they share a bedroom. 

Tommy's life is dependent on the ability of the 

foster family to adequately monitor and respond to 

his health care needs. Fortunately Mrs. Ross is a 

trained nurse and the fire station personnel nearby 

are alerted to the possibility of medical 

emergencies. The alternative if this wonderful 

family were not available would likely be institutionalization for Tommy. 

2. Actively seek partnerships between State 

and local communities, and private and public 

agencies which ensure adequate community based 

support structures, including respite care and 

other in-home services, which will help prevent 

institutionalization. 

Services for children with intense medical needs, 

including those at risk, which permit and promote 

their retention in a natural, adoptive or foster home 

remain inadequate and essentially unavailable 

through the United States. Families, including 

foster families, of these children are at considerable 

risk for becoming isolated and "burned out" without 

supportive services such as respite care and in-home 

assistance. Yet examples abound of situations in 

which supportive services are only marginally 

available and in danger of being further reduced. It 

also seems that supportive services are more likely 

to be available to foster families while natural or 

adoptive families are more at risk for not receiving 

any support services. 

Danny is ten years old and lives in the Pacific 

Northwest. He has severe contractures, no 

ambulation or speech and severe respiratory 

problems. He fits the planning definition of Intense 

Medical Need. Danny's home has been modified as 

much as possible to accommodate his special 

equipment needs. He receives quite a few services 

through the school system although his parents 

assume the financial burden for a number of things 

for which there is no assistance available. Danny 

now weighs close to 80 pounds and his mother, a 

diminuitive 5'0" tall, is finding it nearly impossible 

to physically care for him by herself. Respite care 

is rarely available to this family. More critical to 

this situation, there is no other in-home service 

available for even the few hours that another 

family member is not there to physically assist the 

mother. However, another financial source would 

pay for out-of-home placement. It is only through 

the family's adamant advocacy on behalf of their 

son that he has not been placed in an alternative (and 

more expensive) care situation by community caseworkers. 

The development of community services 

systems in general in this country have lagged 

behind. Currently they are overburdened and under 

funded. Waiting lists are long, in many instances, 

and may not even reflect the true numbers of 

people getting by with less than optimal or no 

services at all. It is difficult to prevent the 

institutional placement of people who fit in any of 

the three definitional categories described in this 

paper when community support services are not even 

adequate for those with less complex disabilities. Lack 

of adequate medical care is a substantial problem in 

many communities and a real barrier to maintaining 

children and adolescents with substantial medical 

need at home. Without the necessary services the 

risks to the life of the child are substantial. 

3. Encourage and support effective 

interagency partnerships and critically evaluate 

alternatives which are developed. 

Foster care is often seen as the viable alternative 

to institutionalization when families cannot care for 

their child at home. Foster care in most states is 

administered by State agencies who do not have 

primary responsibility for children with 

disabilities. Little planning and interagency 

coordination exists between agencies responsible 

for foster care, and developmental disabilities or 

mental retardation State agencies. 

Further, there are too few foster families like 

Mr. & Mrs. Ross, the family in the previous vignette. 

A recent national study of the status of children 

with developmental disabilities in the child welfare 

system (Richardson, M., West, M., Day, P. & Stuart, 

S.; In Press) reveals a foster care system that is 

overburdened and under prepared for children with 

even mild disabilities. Foster care workers are 

poorly trained in regard to mental retardation and 

other disabilities; foster families are not generally 

trained to deal with the complex needs of a child 

with medical problems regardless of severity; the 

level of reimbursement for foster care generally 

assumes a volunteer status on the part of the foster 

parent making it difficult to recruit a person with the 

professional skills necessary to care for this special 

group of children. 

Philosophical differences are substantial. Foster 

care systems are traditionally organized to step in 

when a family fails. Families with 

199 
mentally retarded children should not have to fail 

to receive help in raising their child. All too 

often, the involvement of foster care requires 

relinquishment of rights on the part of natural 

parents rather than providing a shared parenting 

option. 

More attention has been accorded to specialized 

adoption. Specialized recruitment and training is 

more likely to occur. However, careful attention 

needs to be given to the needs of the child, the 

natural and the adoptive family. Support services, 

including respite and other in-home care supports 

are necessary and must be available. 

4. Recognize that community placements 

may not be less expensive than a State operated 

institution. 

Movement out of public institutional settings 

has been generally believed to lead to lower costs 

of care. Much of that belief appears to have been 

based on the early movement of more functional 

individuals, requiring fewer and less intense services, 

from institutions and the assumption that a significant 

number of people would return to live in their family 

homes. The population that remains in institutions and 

other protected environments including children's 

hospitals require intense, expensive care. Placement in 

a community will not necessarily lessen the 

intensity of care needed and overdependence on 

families to provide low-cost or no-cost care 

substitutes will contribute to their inability to cope. 

RECOMMENDATION II: ENSURE FLEXIBILITY AND RESPONSIVENESS IN THE SERVICE 

SYSTEM 

1. Work together to determine how to 

effectively utilize all the valuable resources that exist 

The more complex the problem faced by an 

individual who is mentally retarded, the more 

flexibility is needed in the ability of the system to 

respond. Children who fit any of the three definitions 

presented require an array of health, educational and 

social programs. A system with multiple options 

and ease of movement in any direction is going to be 

most responsive. 

A significant impediment to effective planning 

has been the philosophical rift that has occurred 

within the community of families, advocates, and 

providers of services to individuals who are mentally 

retarded. Institutions have in many ways become 

the symbol of the denial of human rights to 

disabled people. They have become very 

controversial as a residential option. In fact support 

for community program has often been secured by 

decrying the evils of institutions. 

Considerable controversy exists regarding the 

role of institutions in the total system. This 

controversy has, in many instances, polarized 

families, clinicians and other people who are often 

the decision makers regarding services for 

individuals with chronic disabilities or handicapping 

conditions regardless of age. In our desire to ensure 

a home in a "good" setting for the children which 

are the focus of this paper we may lose track of 

attending to the critical needs of the child as we 

debate "goodness" or "badness" of setting type. 

Opportunities to enhance a child's life as well 

as where they live may get lost in an argument about 

setting types. Institutions and other protected 

environments such as hospitals have staff with 

considerable experience serving children who have 

complex medical needs. They also offer a 

significant resource in terms of available 

technology. We mist be creative in utilizing these 

important resources regardless of where a child 

lives. 

2. Assure access to any part of the system 

which will best meet the needs of the child and 

family involved 

The need for adequate supporting services has 

been mentioned in this paper and will be addressed 

in greater depth by another panelist. However, it is 

important to note the lack of community resources 

in this country in general is especially problematic to 

the individual with intense medical needs or one who 

is at risk for medical vulnerability. 

In the State of Washington, the State Habilitation 

Centers (Institutions) are staffed by well trained and 

experienced developmental pediatricians and other 

health care specialists with considerable experience 

caring for children whose medical needs fit all 

three definitions. Habilitative staff are especially 

creative and innovative in developing positioning 

and other adaptive equipment for these children. 

The Centers have the potential for serving as a diagnostic and specialty care center for people living 

in the community for whom specialized services 

may be difficult to find. They also have the 

capability of offering emergent care and providing 

short term stays for people who need acute 

intervention in order to achieve medical 

stabilization. 

Many institutions seem to have a moat around 

them and a bridge that only allows movement one way. 

Once you get in it is hard to get out and if you are on 

the outside it is hard to get in regardless of how long 

you might plan to stay. The poor use of the skilled and 

knowledgeable staff within the institution is 

200 
difficult to defend in the face of limited resources in general. 

An example, not unique to Washington State, 

offers some insight into the dilemma. The capacity of 

many families to maintain their family member at 

home is often dependent on the availability of inhome supports and respite care. Yet funds for 

respite and in-home care are inadequately funded in 

many states. Empty beds in State operated 

institutions, staffed by experienced personnel, offer 

a respite option. The availability of this option may 

be limited by regulations and/or the philosophical 

position of system planners, providers and advocates, 

who feel that it is better to let families muddle 

through with no respite than to use the available bed 

and trained staff for even an overnight stay. The 

result may ultimately be the inability of the family 

to cope with the complex demands of their family 

member. 

3. Acknowledge that our knowledge and 

technical sophistication is not yet great enough to 

assure survival for some children except in 

institutional or hospital like settings. 

There are still some individuals for whom the 

risk of moving into a less intensive care environment 

is simply too great. The severity of their disability 

coupled with the intensity of their medical need 

requires the highly specialized care which may only 

be found in a hospital- like setting. 

Institutional or other hospital like environments 

are more likely to have sophisticated and expensive 

medical or other types of equipment immediately 

available for children with the more intense medical 

needs or children who are substantially at risk. 

They may have the advantage, also, of affording 

expensive staff on a regular basis, including 

physicians and therapists. Communication among 

caretakers, particularly in regard to health status, 

may occur more readily since they are routinely on the 

same site. 

With expanding knowledge and technological 

capacity, however, alternate residential options for 

these children may increase. Computer technology 

and the enhanced monitoring and communication 

capacity it offers may hold real promise. 

In the meantime, creative planners in Washington 

and other states have developed small, homelike 

facilities which are clustered on the grounds of 

larger institutions. They offer the critical mass of 

highly specialized and life saving services 

necessary. More personalized attention and highly 

specialized care are provided at the same time. In 

one of Washington's facilities a hospice program is 

being developed in order to address the needs of 

individuals who are terminally ill and their 

families. 

A creative addition to homelike settings offered 

in some institutions would be space for family 

members to stay on site and participate in 

providing care if they wished to do so. These 

family residences could also be used for assistance in 

helping families plan for moving their family 

members home in instances where that is an option. 

RECOMMENDATION III. ASSURE FAMILY/ 

SERVICE DELIVERY SYSTEM PARTNERSHIP 

IN ALL PLANNING ACTIVITIES, INCLUDING 

SYSTEMS PLANNING AND ESPECIALLY IN 

REGARD TO FAMILY MEMBERS 

1. Acknowledge and understand family 

concerns 

Without a doubt the major concern of parents 

and other family members of the population in all 

three of the categories is the need for assurance of 

continuing services. Institutional services are 

somewhat protected by legislative mandate. 

Community based services may be less predictable 

over an extended period of time. It is important that 

assurances be made that services would continue 

beyond the life span of the parents after a move into 

a community setting, whether from the family 

home or a larger, institutional setting. 

Parents on the Washington statewide planning 

team especially asked for understanding and 

meaningful participation in the transitions their child 

experiences as they move from one setting to 

another. Among the parent generated 

recommendations was the creation of transition teams 

made up of parents and advocates. Their 

responsibility would include approaching families 

and providing support and information in any 

placement planning decision, particularly with 

regard to individuals with intense medical needs 

or who were at risk for medical vulnerability. In 

addition, parents often feel the need for a "back up" 

plan in the event the community placement does not 

work well. This may be for short stays in a larger 

residential environment or, in some instance, the 

option of placement of a more permanent nature in 

that larger setting. 

The capacity of the family to care for their 

family member is not a measure of their concern. 

Over and over, parents reminded our study group 

not to assume parents did not care even if they 

were not immediately involved with their children. 

The ability to cope with grief and loss varies 

from one person to the next. We saw single parent 

families, for example, who were remarkable in their 

ability to manage the care of a child with intense 

medical needs. At the same time we are aware that 

201 
other families, perhaps with both parents living 

together, simply could not cope with caring for a 

child whose disabilities were less intense. Yet both 

families were very concerned about their child. 

An important part of the statewide planning in 

Washington is the environment of parents of 

individuals with multiple and complex needs. They 

made substantial contributions to the development of 

the definitions used in this paper and the subsequent 

assessment of the people living in State operated 

facilities. They strongly advocated for the 

involvement of parents in all phases of planning 

whether system wide or individually focused. 

2. Planning for the Life Span 

Services for individuals with disabilities become 

less available as the person ages. Services for school 

aged children tend to be the most abundant, with a 

decline in services occurring as children become 

adults. However, existing service providers may 

not be adequately prepared to meet the more 

immediate and demanding needs of a child with 

intense medical needs or one who is at risk for 

medical vulnerability. Children who are technology 

dependent, for example, will be entering school 

systems in increasing numbers. Adequate 

preparation needs to be made for their special 

needs. 

Adolescents, who have services through 

educational programs, may be less likely to have health 

care and social services routinely available that 

address the special concerns of physical maturation 

and adolescent development into adulthood. Adult 

programs are not nearly so available in community 

based services. It is imperative that day 

programming, transportation, social and recreational 

alternatives be made available in addition to the 

necessary specialized medical care services. 

3. Ensure adequate monitoring and 

evaluation 

Lastly, but certainly not least, is the need for 

ongoing planning, monitoring and evaluation of 

appropriateness and quality of service choices for 

each individual. Planning should take into account that 

we all progress and change developmentally. What 

is a good plan for today may not be adequate later 

in our life. As our needs change, we need 

flexibility and availability of options. Monitoring 

should be systematic and include input from all 

participants of a service system including 

consumers/family members, service providers, 

planners and administrators. 

BIBLIOGRAPHY 

Brunicks, R. H., Meyers, C. E., Sigford, B. B., & Lakin, K. C. (Eds.) (1981). 

Deinstitutionalization and Community Adjustment of Mentally 

Retarded People 

Conroy, J. W. (1985). Medical needs of institutionalized mentally 

retarded persons: Perceptions of families and staff members. 

American Journal of Mental Deficiency 89(5), 510-514. 

Dingman, FL, and Tarjan, G. (1960). Mental retardation and the 

normal distribution curve. American Journal of Mental Deficiency 64, 991-994. 

Eppel, W. A., Jacobson, J. W., & Janicki, M. P. (1985). Staffing ratios in 

public institutions for persons with mental retardation in the United 

States. Mental Retardation 23(3), 115-124. 

Eyman, R. K., Chaney, R. H., Owens, C. A., Lopez, E. A., & Lee, C. K. 

E. (1986). Medical conditions underlying increasing mortality of 

institionalized persons with mental retardation. Mental Retardation 

24(5), 301-306. 

Keating, D. S., Conroy, J. W., & Walker, S. (1980). Family impacts baseline: A 

survey of the families of residents of Pennhurst, Philadelphia. Temple 

University Developmental Disabilities Center. 

Keyes, V., Boroskin, A., & Ross, A. T. (1973). The revolving door in a 

mental retardation hospital: A study of returns from leave. Mental 

Retardation 11(1), 55-56. 

Meyers, C. E., & Blacher, J. (1987). Historical determinants of residential 

care for mentally retarded people. In S. LandesmanDwyer & P. Vietze 

(Eds.), Living with Mentally Retarded Persons. Washington, DC: 

American Association on Mental Deficiency. 

Pagel, S. E., & Whitting, C. A. (1978). Readmissions to a state hospital for 

mentally retarded persons: Reasons for community placement failure. 

Mental Retardation 16, 164-166. 

Payne, J. E. (1976). The deinstitutionalization backlash. Mental Retardation 

14(3), 43-45. 

Richardson, M., West, M., Day, P., & Stuart, S. (1989). Children with 

developmental disabilities in the child welfare system: A national 

survey. Child Welfare, In press. 

Scheerenburger, R. C. (1981). Deinstitutionalization: Trends and Difficulties. 

In R. H. Brunicks, C. E. Meyers, B. Sigford, and K. C. Lakin (Eds.), 

Deinstitutionalization and Community Adjustment of Mentally 

Retarded People. Washington DC: 

American Association on Mental Deficiency. 

Seltzer, M. M. & Krauss, M. W. (1984). Family, community residence and 

institutional placements of a sample of mentally retarded children. 

American Journal of Mental Deficiency 89(3), 257-265. 

Tarjan, G., Wright, S. W., Eyman, R. K., & Keeran, C. V. (1973). Natural 

history of mental retardation: Some aspects of epidemiology. 

American Journal of Mental Deficiency 77, 369-379. 

Thomas, R. (1986). Ventilator dependency consequences for child 

and family. Unpublished dissertation. 

Wright, S., Valente, M., & Tarjan, G. (1962). Medical problems on a 

ward of a hospital for mentally retarded. American Journal of 

Diseases of Children 104(8), 142-148. 

202 
Access to Health Care 

by Gregory P. Weigle 

President 

Alliance of Genetics Support Groups 

Herndon, Virginia

I am privileged to serve on a couple of 

Boards of Directors, the one in particular the 

NDSC. I want to say hello to my friend and 

compatriot of many years, Mr. Frank Murphy, the 

current president of the National Down 

Syndrome Congress (NDSC), sitting over here. I 

was fascinated by your comment that advocates and 

consumers indeed consider professionals be 

trainable. I sort of was amused by that, I remember 

early on when I started speaking in front of 

professional groups, I was a little bit unsure, and I 

talked to my dad about it, and I said "you know, I'm 

walking up there, I have a BA and all, and I'm not 

really professional", he put his arm around my 

shoulders and he said, "you always remember 

something", he said, "fifty percent of the doctors 

graduated in the bottom half of their class." I never 

felt bad after that. 

Anyway, I speak in different forums on access to 

health care, not specifically with regard to the 

mentally retarded but indeed to all individuals who 

might have some sort of a chronic or disabling 

condition that causes them to be somewhat more at 

risk for being in need of health care services, and I 

have big numbers, how many millions of people 

aren't covered and these sorts of things and, but it was 

sort of funny, I talked to Frank last night, he was very 

kind when he got in town and gave me a call. We 

were chatting about some of the things we've done 

in the National Down Syndrome Congress and 

whatnot over the years and I thought I might start, 

rather than talking about big numbers, maybe talking 

about one person. A number of years ago, and not 

very many, it was in the early 1980's, there was a 

mom that brought a youngster into an HMO in a 

major metropolitan area of the United States for a 

well baby checkup. The child was about a year and a 

half or two years old and they were fairly new to this 

plan at this HMO. And as is the protocol of course 

she took the youngster's clothes all off and he's 

sitting there on the table and the doctor walked in. 

And he looked at the child and he shook his head and 

he said, "there must be some mistake." And she said 

"well, what is this mistake" and he said "well, we 

don't take those here": See that child had Down 

syndrome and the mom said "I don't understand" and 

he said "well there must be some kind of mistake, we 

wouldn't be that foolish" and she was very upset and 

put the boy's clothes back on and left and went home, 

and made a phone call to the folks that run this particular 

facility and said "I just don't understand how you can 

accept a family into your program and then have a 

doctor say that you don't take care of certain patients". 

And the individual who was in charge of consumer 

complaints said something like, "well, the doctor 

sounds like he was a little bit abrupt, but, sure, isn't that 

obvious, you know, why would you intentionally take 

on a risk like that if you are in our position". And she 

was astonished, she said "isn't there some level of 

recourse here" and was given another phone number 

and made another phone call to a director of, I don't 

know, complaint services or something, in the main office and basically was told the same problem. That's 

just the way it is. That's not an unfamiliar scenario for 

those of us who sit as I have for a number of years 

on the NDSC or in the Alliance in a position where 

we receive letters of complaint from consumers who 

are unable to get health insurance for people who 

have serious problems. Some of the problems are resolved nicely and some are not, but from a very 

203 
personal standpoint, you know, not the quantification 

of the millions of people who don't have insurance 

but from a very personal standpoint those 

individuals who deal with these problems are a lot 

more affected than simply thinking about how to 

get from day to day, how to deal with us in public 

service. You are already in a position, in mind set, 

in a place in their lives that they didn't see, they 

are dealing with a condition they didn't want to 

deal with and are doing as well as they might and 

very personally, that's a difficult situation from a 

personal and family standpoint, we will finish this 

story in a while. Anyway. 

In the United States today, there are somewhat 

over 38 million people that don't have any kind of 

health insurance at all. Any kind of health 

insurance, and a very large percentage of those folks 

are people that have mental retardation because 

indeed they are identified as being somewhat more at 

risk than many other segments of the population. 

And of those 38 million people with no insurance 

at all, that doesn't take into account the other 

millions of people that are significantly underinsured, 

those who have very high deductibles, those who 

have particular services written out or ridered out of 

their policies, etc. There is a significant level of 

under-service with regard to how this society is set 

up dealing with financing of health care in the 

country. Now it's said that it's in a sense an 

employment driven system. The employment driven 

meaning that basically if you have a job that's 

typically where you are going to get your benefits 

package or health care. Well if you look at those 

38 plus million people you will find that over 

two-thirds of them are employed, indeed, full time, 

part time, and seasonal labor. You know, maybe it's 

not like working at a fancy hospital or having a 

government job but they are fitting into the basic 

concept of the system where they have a job, they 

are making a living, they aren't indigent per se, but 

they can't get insurance because the way policies are 

written. It's a particular kind of group you don't 

necessarily have a "group" for: a small company 

that might only have ten people in it or for farm 

laborers who are around for a couple of months and 

go away. There are a number of those kinds of 

situations that simply by the nature of the system 

as it exists right now, very difficult to get insurance 

unless you apply for it on an individual basis. Well, 

if you do that you have to qualify, you have to be 

underwritten, as they call it individually, and that 

means if you have someone in your family of 

special health care need there's a very good chance 

they aren't going to be covered. And I hear it said in 

a lot of Forums that that's a significant problem. Yet 

if you look at the actual 

numbers, if there are, and this is a very rough 

number, but if there is somewhere in the range of 

fifteen or sixteen million people in the country that 

would fall into that category of being in a special 

health care need category and you look at the 

quantification of people in that thirty-eight million 

who are of that same category, that special health 

care need, you will find that it's only in the range of 

about two and a half million people. That means 

that somewhere, somehow, twelve, thirteen million 

folks are somehow covered within the system. The 

argument that we hear from industry, industry 

meaning the insurance industry, the financers of 

health care, simply does not hold. It simply is not 

true that people are uninsurable. What it is is that 

the nature of the system as it is designed, in other 

words one that is employment driven, one that is, 

we won't say financed, but encouraged by Federal 

tax policy of being able to write off payments to, an 

insurance company off of your corporate profits, 

does not cover a significant portion of the 

people, but it's not because they're uninsurable, it's 

because the nature of the system itself is not 

covering this thirty-eight million chunk, and that's a 

significant problem. It's in effect what I call a 

defacto policy. It's a policy that exists not by 

design but by default and because of the nature of 

that policy there are significant complications in 

the delivery of dollars to finance health care. For 

instance, all those people being employed, and 

being able to hold down jobs and not being able 

to get insurance. So as we, in the advocacy 

community look at the situation and how to access 

health care for those of our constituency who have 

problems we recognize that indeed we aren't dealing 

only with this particular community, we are dealing 

with an overall health care financing policy that we 

feel needs a reexamination and perhaps a little bit 

of change. 

We have some factors going on in health care 

today that are rather significant. You know it's funny 

you mentioned "Sick Kids Need Involved People" 

(SKIP) a while ago, I know Julie Becket and very 

early on in their situation which is I think a lot of 

what lead to the formation of SKIP. What happened 

was their youngster was hospitalized for a long 

period of time, being very, very dependent on a 

ventilator and couldn't leave the institutional 

setting. And when she got better, this was Katie, it 

would have been significantly less expensive to 

take care of the youngster at home, but because of 

the nature of the laws if they had taken the child 

home they would lose all benefits. Whereas if 

they left the child in the hospital setting, the 

benefits were taken care of by Medicaid. And 

simply another example, there is 

204 
a misdirection of policy that somehow, you know, 

it doesn't make sense for the government to waste 

money, and yet they were doing it. It doesn't make 

sense to split families apart, and yet the policy 

dictated that that would be the case, and it took 

intervention by a guy named Reagan to stop that. It 

took a phone call from the President of the United 

States to the head of HHS to say, "this is dumb, 

do something about it", you know, it's a policy 

problem. 

So again, factors that are currently impacting 

upon health care financing in the country in particular 

today that will not alleviate but indeed will worsen 

the condition we are looking at. The increasing 

prevalence of transplant in treatment of problems, 

whether it be heart, or liver, or kidneys, or whatever, 

there is an institution in New England, some of you 

folks may know, whether it's the University of 

Connecticut or Harvard or what I'm not sure but 

they have a rate something like the last thirty heart 

transplant patients of them, twenty-nine are back at 

work. It's obviously a viable intervention 

medically and is therefore going to be reimbursed 

as an appropriate non-experimental treatment. 

Well that's a very expensive procedure. It's going to 

run dollar costs up very much. Trauma care in the 

United States is undergoing over the last few years an 

astonishing increase in the ability to maintain the 

lives of individuals who a few years ago might of 

died from a serious accident or illness. You know, 

the medivac helicopters and the special medical 

units at certain hospitals, what that does is number 

one, means that there is a relatively expensive series of 

procedures that takes place for this person and that the 

person might take instead of leaving us, as they 

formerly would have, might take six months to 

recover. And because of the nature of subsequent 

disability, can't necessarily go back to work in the 

same capacity they could before. So you have a person who has been receiving medical benefits, who 

if they go back to work will lose their eligibility for 

the benefits, so you have a built in glitch in the 

system that says we're learning to save people but we 

aren't going to let them live their lives and go back 

to work. It's a policy problem that has to be 

addressed. 

Certainly, the increasing prevalence of AIDS in 

this country and the treatment of individuals who 

will come down with that particular disease is going 

to run the cost of health care up dramatically over the 

next couple of decades. It's already beginning to 

have a significant impact in certain parts of the 

country. 

Testing. Testing for anything, blood tests, 

whatever anybody might go in for, because of the 

number of law suits that you see for malpractice and 

the kind of settlements that are being acquired by 

people that win those law suits, it was estimated 

recently, I guess it was in Inquiry Magazine, put out 

by Blue Cross/Blue Shield that somebody estimated 

between thirty and fifty percent of the tests done in 

this country for medical reasons are utterly 

unnecessary, it is simply covering yourself, in case 

you get sued. Do four extra tests, well that runs 

costs up. 

The area that I'm particularly involved in, in 

the area of genetics, some of you I'm sure are aware 

of the evolving technologies that are coming to 

bear in the field of genetics today where we aren't 

just learning how to test and find out about what a 

person's condition might be, or what they might 

develop over a period of years, but indeed we are 

evolving into an area where we can intervene. 

There's a fellow who happens to be the Secretary 

of our organization who is the first human 

recipient of genetically engineered Factor 8 for 

hemophilia, instead of being human serum they are 

getting us Factor 8 out of these little hampsters or 

something, I don't know what, but, it's very 

expensive, but it's also an AIDS free intervention 

that takes care of his disease and it won’t be but 

another ten or twenty years that they're going to 

find the technology to where they can inject him 

with a particular genetic substance that will cause 

his own body to develop its own Factor 8 and he 

in effect will be cured of his condition, and that's 

going to recur in many other conditions that we find 

the genetic linkage for. And that level of technological advances is advancing just geometrically, 

it's amazing, and again, very expensive. 

Right now in the United States we are spending 

somewhere in the range of eleven percent of the gross 

national product on health care. That's up very 

significantly over the last couple of decades. In fact, 

private insurers are looking at somewhere in the range 

of six times the dollar outlay that they were just 

twenty- five years ago for taking care of health care 

costs, and with all of the pressure upward for how 

many dollars are going to be spent, and for in a sense, 

the desire of the financers of health care to hold the cost 

down, you have a conflicting situation. You have on 

the part of the government things called Diagnosis 

Related Groups (DRG's), I'm sure most of you folks 

are real familiar with those, where there's a desire to 

capitate the level of reimbursement for particular 

procedures. Certainly in the industry level, you're seeing 

higher deductibles, you're seeing riders existing more 

than they used to, in general a trend toward purging 

either people or particular conditions out of the system 

that finances the payment for these kinds of treatments. And as a result, as we look at increasing 

205
costs on the one hand, as we look at the ability of 

either the government or private insurers to not pay 

for increasing amounts of that reimbursement. What 

you do, in effect, is you begin to impact upon those 

family units that have already a greater level of 

jeopardy economically because of the fact of having 

a family member that is significantly affected by a 

chronic condition or disability. I have to say, and I 

enjoyed many of your comments, but I have to say 

that I object to the idea of looking only at children 

as the people that we need to look at, in fact, one 

of the large problems right now is that we have for 

the mentally retarded an educational system that is 

able to take people that twenty- five years ago might 

have to be institutionalized, and we are teaching 

them enough that they can go out and be 

functioning members of society. They can be wage 

earners, they can be tax payers, and yet we are not 

developing a health care financing system that will 

permit them to go out and earn that wage. We have 

again a policy situation to look at; we need to 

address it not just on the level of how we deal with 

kids but what we do them at age twenty- one. And 

what are we going to do with all these folks with 

all this wonderful special-ed that we give them. 

And so we have those kinds of factors play 

additionally. 

Over the years the government, whether it be 

state or federal government has done a number of 

things that begin to address this kind of policy 

consideration we talked about. Medicare and 

Medicaid, two very obvious areas where particular 

problems were addressed by means of particular 

legislation. Certainly universally it did not take care 

of all the people that don't have the ability to 

finance their own health care, but they were 

significant steps. You will have noted in the last 

year or so the catastrophic insurance that was 

proposed on down here on Capitol Hill for elderly 

individuals that Medicare wasn't taking care of, so 

there was this little glitch in that Medicare system 

that somebody decided they would address with a 

little factor right here. 

There are States around the country that say, 

you know, we realize that people can't get insurance 

so whether it be through Blue Cross/ Blue Shield or 

some similar type of plan in the state there will be a 

given month of every year wherein you can just 

sign up even if you have a member of your family 

that would not otherwise be eligible. If you can 

afford the insurance, you can buy in. There aren't 

many of these, only two or three that I know of. 

There are hospital taxes that take care of 

indigents. Florida, being one of the most not plus 

every year, that hospitals finance the care able, right 

now runs a multimillion dollar surfor indigents that 

are taken care of in those facilities. But again that's 

a little nitch of the population, that's not the 

population in general. 

There are things called risk pools, I don't know 

if you all are familiar with those, in about a dozen 

States in the country. There are plans sponsored by a 

given State that if you're turned down for insurance 

for whatever reason, you can buy into this State 

sponsored pool and be insured, for health insurance. 

The only problem is that the average cost per year 

per individual runs between four and seven 

thousand dollars per year, including your premiums 

and the initial co-payments, based on what State it's 

in, and there is always a waiting period. So it's 

again not a perfect answer. And to give you some 

idea of the quantification of those dozen States that 

have it in place, and remember we're looking at thirtyeight million who don't have insurance, about 

twenty thousand people in the country have 

joined risk pools. So truly there is not a full 

answer with this particular mechanism. 

There are a few states in the country that have 

actually played with the idea of having State 

health insurance plans. Sort of like insurance for 

everybody funded out of State revenues. 

Wisconsin has been playing with three or four 

pilots now for about a year and a half or two years 

and they don't have any of them in place yet. 

And Massachusetts right now is batting one 

back and forth in their legislature. They are 

probably more likely to have it in place before 

anyone else. 

Other little things people have thrown out, there 

is a thing called Med-America, I don't know if you 

all have heard of that, that was a bill proposed this 

past year wherein there would be a graduated 

buy-in available to people, into the Medicaid 

program. In other words, if you are at X income 

per year, you would pay a certain amount and be 

covered by Medicaid benefits as opposed to not 

having insurance at all. It didn't go through but it's 

something that's being looked at. 

There are many other things that cross Capitol 

Hill or a number of the other States. The primary 

factor that is common to all of them is that none of 

them really focus on what the problem is. And the 

problem is simply that the increasing cost pressures 

that exist with health care as it exists today, in 

particular for populations such as the mentally 

retarded, in fact all of us who deal with family 

members who have a person with a special health 

care need, with those increasing costs, the increas206 
ing ability of financers of health care to purge from 

their systems those individuals who are at higher risk. 

We really need to begin to focus on what we 

can do on a legislative level, on an advocacy level, 

on an industry wide level of how to cause the 

funding to flow without necessarily tipping over 

every single boat that's already in the pond. We 

who participate in these things, and I have met with 

industry folks over the last couple of years, don't 

necessarily say there shouldn't be any private 

health insurance, all there should be is a national 

health care plan. There are many ways that you 

could integrate a plan whether it be on a state 

wide basis or on a Federal basis that would utilize 

existing industry. But indeed something is going 

to have to be done, and it's going to have to be 

done nation wide, it's going to have to be done 

comprehensively, it's going to have to be done with 

the participation of all the various individuals 

involved with this, consumers, industry people, 

providers of health care, policy planners, because 

if it isn't done all there's going to be is fifteen other 

little bandaids that are going to get dropped on a 

problem and there is still going to be great big 

cracks that people are going to fall through. 

So what we advocate for, what we speak for, 

is the concept that let's figure out, number one, are 

we spending enough money on health care in the 

country, or should we recognize the fact that maybe 

eleven percent is not a large enough chunk of the 

GNP. Maybe we need to trade off some guns for a 

little bit more butter. Maybe that should be an 

appropriate area of discussion. What makes one 

eligible for being able to get certain kinds of 

services, should there be a minimum mandated 

service level for people. 

We heard some comments a while ago about 

how important it is to include genetic services in 

certain kinds of delivery of primary care, because if 

you don't do that you aren't dealing with prevention 

aspects that are potentially there, and if you don't 

fund that it's not going to happen. And we need to 

do it on a policy level incorporating those individuals 

that indeed write the policies, meaning governmental 

officials. I really see us at a crossroads right now, at a 

point where if we don't begin to do something other 

than the bandaids that have been done for so many 

years, there's going to be a huge dropping of those 

populations that are more in jeopardy. Because in 

fact that is the very basis upon which certain health 

insurance companies in this country today are 

starting to make contracts with individuals who can 

do genetic probes and find out individuals 

propensity toward later disease even if they don't 

have symptoms right now. So if there's 

a chance you're going to get lung cancer, they're 

going to know when you're born and you might 

not be able to get your insurance. And that's not 

going to be something that will disappear unless it's 

addressed universally, on a national level, by 

people who are going to write this as policy as 

opposed to as a response to a particular interest or 

pressure group. And we very much hope that those 

in the provider community as well as those' in the 

policy community recognize that this is not 

something that is static, that it's going to be getting 

worse, and that it should be addressed soon in an appropriate fashion. 

The mom came home from that HMO and she 

made those phone calls and got very, very 

discouraged, and spent the rest of the day wondering 

how that family was going to hold itself together if 

that youngster could not get insurance. And the dad 

came home and they talked about it. And the next 

morning he made one phone call. He called that 

particular HMO and said, "I'm going to make you an 

offer you can't refuse". The Executive Director said 

"this is a thing called open season, it's November in 

Washington, D.C. And in Washington, D.C. in 

November all the government workers can change 

to any other plan they want, it was an approved plan 

for as long as employees." And the dad said, "I 

don't care what your policy is, you and I are going to 

discuss this in the Washington Post," and my son got 

his insurance. See I don't believe in taking that first 

no, I think that you take a situation and you deal 

with it constructively, and you find a way to get 

around whatever corners you might meet. 

207 
Health Services to Children with Mental Retardation 

in the Community, Schools and Home 

by Juanita W. Fleming, Ph.D. 

Associate Vice-Chancellor, Academic Affairs 

Professional and Medical Center 

University of Kentucky 

Lexington, Kentucky 

Health Services to many children with mental 

retardation are similar to those for other children. 

There are some, however, who need special 

services because of the varied health problems 

they experience. Because the American health care 

delivery system is undergoing revolutionary 

changes, it is timely that health services to children 

with mental retardation in the community, schools 

and home be considered. This is particularly 

important for those who receive residential care 

and those who need in-patient hospital care. 

FACTORS IN THE HEALTH CARE DELIVERY 

SYSTEM 

The decision of the Federal Government to 

discontinue retrospective reimbursement for 

hospital services and to pay prospectively on the 

basis of diagnostically related groups (DRG's) and 

emphasis on cost containment in health care 

delivery are two factors that no doubt triggered 

some of the changes that are emerging and are 

evident in the health care delivery system. To 

minimize cost of hospital care, more services will 

be provided in ambulatory care centers, out patient 

urgent care and surgical centers. Health 

Maintenance Organizations (HMO's) are expected 

to grow and provide services to millions of 

individuals. In 1985, more than 300 HMO's were 

providing health care to 15 million people. In 

addition greater emphasis is being placed on health 

care service in the home. The move toward managed 

health care has implications for the health care 

delivery system to all children. This is important 

because the third largest industry in the U.S. is 

health care. Depending on the nature of the child's 

retardation, he or she may or may not be cared for in 

these managed health care services. 

Other factors that indicate dynamic change in 

the health care delivery system are the 

technological advances which have revolutionized 

diagnosis and treatment of some conditions, liability 

claims and increased cost of malpractice insurance. 

Those children who would receive care in the 

hospital may now receive care in an ambulatory 

care setting. Hospital stays are likely to be shorter 

than in the past. Exactly how this will affect 

children with retardation is not clear. I recall 

reading the findings of a study - where the responses 

of children prepared for surgery in the hospital and 

children prepared for surgery in an ambulatory care 

setting were compared. Responses of children who 

had surgery in the hospital indicated that they 

adapted better following surgery than those 

prepared in the ambulatory care setting. The 

investigator concluded that the hospital was the 

better place for surgery. Time may be an important 

variable which was not considered as a probable 

reason for the findings. This study is mentioned 

because time would be a critical factor in working 

with children with retardation in helping them to 

understand and cope. 

FACTORS IN SOCIETY 

There are factors in society that are evident 

which also may have implications for health 

services to children who are mentally retarded. 

They are: 1) the average age of Americans is 

increasing. People are living longer and Americans 

over 45 years of age are a fast growing cohort. 

Further, there is a great deal of advocacy for the 

elderly; 2) a more culturally diverse population is 

emerging with an increased number of Hispanics, 

Blacks and Asians in society; 3) more women are 

in the work force. It is projected that by 1990 the 

208 
number of children under six whose mothers work 

outside of the home will increase to 11.5 million, and 

the number between the ages of 6 and 13 will increase to 

17 6 million; 4) consumerism values appear to be 

changing. With more information being available to 

individuals, there seems to be greater emphasis on 

helping one's self. Toffler suggested that this rush to 

treat one's own problems, instead of paying someone 

else, reflects a substantial change in values, our definition 

of illness, and our perception of body and self 

Education of health professionals so they can 

competently provide care to persons with mental 

retardation is another factor that needs to be considered. 

With the tremendous amount of information needed 

to function as a health professional, critical questions 

are: What will be removed from the curriculum of 

health professionals? What is the basic information 

needed to adequately educate health professionals to 

care for people with mental retardation? Are there 

strategies that will enhance student learning? The 

University affiliated programs have provided a model for 

training of team members who provide care to 

children with disabilities. All of these factors have 

implications for health services to mentally retarded 

children. 

ANALYSIS OF FACTORS 

A brief analysis of the factors identified, from the 

perspective of health services to mentally retarded 

children, suggests several trends. 

Deinstitutionalization of mentally retarded 

individuals will continue because of the costs of 

institutionalization. Economics and technology play 

a definitive role in health services that are delivered. 

Further, the belief that individuals can benefit to a 

greater extent in community and family based 

facilities than in large residential facilities also plays a 

role in deinstitutionalization. 

More family centered, community-based, 

coordinated health care services will evolve. In 

Kentucky's fourteen regions for Mental Health and 

Retardation there are preschool, day care, home and 

center based programs designed for children with 

handicapping conditions. These services are 

provided in clusters (or systems) which serve up to 

45 people, by meeting their individual needs which 

they, their families, and communities cannot 

otherwise fulfill. The services include case 

management, an individual living environment 

tailored to the clients' special needs, day 

habilitation, in-home support, habilitation and 

respite. 

A greater emphasis on preventive services 

seems evident if more individuals use HMO's. Early 

intervention and preschool programs for children 

with handicapping conditions are evident in some 

States. Some families, whose children are 

dependent on medical devices for which 

reimbursement can be given only if the children 

receive care in the hospital, will benefit from 

legislation which has been introduced whereby 

insurance plans would cover in-home medical 

technology services for children. Prevention 

will be viewed broadly and not simply from the 

perspective of primary prevention. Secondary and 

tertiary prevention also will be emphasized. 

Changes in society suggest that more funds likely 

are to be provided to support activities for the 

elderly because the population is getting older. 

The question becomes how funds can be made 

available for both of these vulnerable groups of 

individuals. 

It seems logical to conclude that more children 

with retardation from the minority groups mentioned 

earlier in this paper are likely to come to society's 

attention, if the population increases in these 

groups. 

More mothers will work outside of the home. 

Presently, child care is not available to handle the 

number of children of working mothers. The 

likelihood of there being adequate services that are 

concerned with the health needs of children with 

mental retardation is small. 

The fact that a child is retarded may compound 

the issue of the availability of health services. 

Will health services be available for all children 

with retardation and their families, regardless of their 

ethnic background and socioeconomic status? In the 

Health Policy Agenda for the American People, 

two principles are stated which are pertinent to this 

question — a general principle and a specific one. 

The general principle reads: "The primary purpose 

of health care facilities should be to serve community 

needs by delivering health care." The specific 

principle reads: "Health care facilities and health 

professionals should fulfill their social responsibility 

for delivering high quality health care to those 

without resources to pay." These principles suggest 

policies that assure access to quality care to 

vulnerable populations such as children with mental 

retardation and all segments of the population 

regardless of race, religion, social or economic 

condition. 

INFLUENCE OF THE PRESIDENT'S 

COMMITTEE ON MENTAL RETARDATION 

The President's Committee on Mental Retardation can: 

• foster prevention. Primary, secondary and 

tertiary prevention is critical in providing health 

services to children with mental retardation. 

Support to local health departments, private 

physicians, and other community health agencies 

to assure that children receive 

209 
their immunizations and other specific health needs 

is important. Vaccine prices are increasing 

because of litigation costs against manufacturers. 

Since 1980, the price of diphtheria, tetanus and 

pertussis vaccine has risen from 14 cents to $7.49 

per dose, an increase of over 5,000 percent. It is 

important to assure that no child is ever deprived 

of needed vaccine. 

 advocate and demonstrate commitment to 

assuring that health services are available for 

children with mental retardation. There is an 

increasing number of families and individuals in 

this country who cannot afford medical care or 

health insurance. These individuals do not qualify 

for Medicaid. There seems to be an increasing 

advocacy on behalf of the elderly, and this is 

certainly positive. "Gray Power" is on the 

increase. It is equally important that advocacy on 

behalf of children be strengthened. It is important 

that "Kids Power" also increases. 

 maintain and enhance the essential services that 

are now available to mentally retarded children. 

Mentally retarded children's health care needs 

vary. Some have need of several special services, 

while others' needs are typical to those of many 

children. Support of the University affiliated 

programs for screening, evaluation and care of 

children has proven effective and should be 

continued. The use of a team of health 

professionals to work with these special needs 

children reflects a commitment to working from a 

holistic perspective with the child and his or her 

family. 

 encourage coalitions, collaboration and 

cooperation among groups that have interest in 

children. There are many public and private 

national, regional and local groups interested in 

children with various types of problems. An 

approach worth considering is the provision of 

incentives to groups and health care 

professionals who work together to provide 

services to children with mental retardation and 

other handicaps. 

 promote the conduct of research on the 

delivery of health services to children with 

mental retardation in the changing health care 

system and other clinically relevant aspects of 

care of these children. 

 stimulate opportunities for families of children with 

mental retardation to help themselves. The use of 

Care By Parent units, where parents learn to help 

their children, may be one way to provide 

opportunities. 

 assume leadership in promoting health care 

professionals who are prepared to provide 

family based health services to children with 

mental retardation. Universities and colleges 

need to assure that the curriculum for health 

professionals includes information on developmental disabilities. It is conceivable that many 

retarded children can be mainstreamed in the 

public schools, given adequate support systems. 

Appropriate preparation and emphasis on a team 

approach will facilitate the development and 

implementation of care plans that will aid in 

meeting the health needs of these children. 

 encourage a greater emphasis on follow-up and 

evaluation of children with mental retardation 

diagnosed and treated in the health care system. 

 foster partnerships of local school districts with 

other community health agencies that provide 

services to children with mental retardation. The 

importance of coordinating services so that the 

child can ultimately benefit cannot be 

overstated. Encouraging the building of 

community based service systems with schools 

to prevent fragmentation and gaps will enhance 

the services to these children. Many need basic 

health services, as well as a variety of other health 

services such as mental health. The school nurse 

could be a valuable resource. 

 promote the development of alternative 

strategies and systems for delivery of health 

services to children with mental retardation, 

similar to the immediate alternative program in 

Kentucky which is described above. 

 promote the provision of incentives to bothpublic and private child care facilities that serve 

children with mental retardation and demonstrate 

that a component of health services is included in 

the program of the facility. Get employers to 

include in health care packages specialized 

health services where needed. 

 use its influence to get group insurers to 

include as one of their product packages health 

services for people with mental retardation. 

SUMMARY 

Several factors that may have implications for health 

services to the people with mental retardation were 

highlighted, and a brief analysis provided of these 

factors. Suggestions for the President's Committee 

on Mental Retardation were provided. Private and 

public facilities are necessary to provide adequate 

health services to children with mental retardation. 

Leadership to impact health services for these 

children likely will result from a combination of 

family, health professionals and public spirited 

working together to assure that these children 

receive the care that is needed. 

210 
REFERENCES 

1. — (1985 Spring/Summer) Dollar Plus, 6 

2. Child Care Information Service (May 1985). Survey 

Report: Young Children, 40:46. 

3. Kentucky Directory 1: Early Intervention and 

Preschool Program for Children with 

Handicapping Conditions. 

4. Kentucky Directory 3: Advocacy, Leisure and

Residential Programs and Resources for Persons with 

Mental Retardation/Developmental Disabilities and 

Their Families. 

5. Lightfoot, Donald G. Supermeds. Employee 

Benefits Journal, 12:2-5. 

6. Surgeon General's Report (June 1987). 

Children with Special Care Needs. U.S. 

Department of Health and Human Service Public 

Health Service. Health Resources 

Administration Bureau of Health Care Delivery 

Division of Maternal and Child Health. 

Rockville, Md. 

7. The Health Policy Agenda for the American People 

(September 1987). 

211 
Health Services in a Rural Setting: 

Sometimes the D.D. in Mental Retardation 

Stands for Delights and Dilemmas 

by George Daniels 

Director of Staff Development and 

Training at Sunmount DDSO Tupper Lake, New York 

HISTORIC PERSPECTIVE 

Sunmount Developmental Disabilities Service 

Office (DDSO) main office is located at the 

Developmental Center in Tupper Lake, 35 miles 

from the site of the 1932 and 1980 Winter 

Olympics in the heart of the Adirondack 

Mountains. Sunmount also provides a full range of 

treatment and habilitation services to people who 

are mentally retarded and developmentally disabled 

who reside in Clinton, Essex, Franklin, Jefferson 

and St. Lawrence Counties. This covers 

approximately 10,000 square miles or is roughly 

the same size of Vermont, New Hampshire, 

Massachusetts, Connecticut and Rhode Island 

combined. 

It is primarily rural with only a few widely 

scattered population centers. The largest single 

employer is the government through Mental 

Health, Mental Retardation, prisons and 

universities. 

Sociologically, the area is as impoverished as 

Appalachia with high unemployment, high 

alcoholism rate, high suicide rate, a high number of 

recipients on social service benefits and a high 

mental illness rate. It also has a high tenacity for 

ruggedness, New England frugality, and a sense of 

camaraderie and cooperation for survival instincts. 

We currently have approximately 3500 

clients on record for services. These services include 

residential care at the developmental center, 

alternative care or service in voluntary and state 

operated day treatment and day training, community 

residences, community ICFs, family care, personal 

care and various forms of supervised apartment living 

arrangements. The developmental center has 

approximately 300 clients who are working for 

alternative placement; within the facility live,

approximately 300 clients. The rest are in the 

community. 

Within the past five years, we have moved from 

a custodial model of care to an active treatment 

service with individualized, integrated programming 

through an interdisciplinary team process. Our 

current focus is to go beyond basic services and 

significantly improve the quality of service 

throughout the DDSO. 

MEDICAL AND RELATED HEALTH SERVICES: 

THE DILEMMAS AND DELIGHTS 

In our attempt to provide a full range of 

services throughout the DDSO, we did a need 

assessment that started with the identification 

of each client's profile (see Developmental Disability Information Services and Developmental 

Disabilities Plan) for if we were to remain dedicated to the idea that this should be a client 

driven system, we needed to know what our 

client's needs were. When this information was 

generated, we then could compare the needs 

against current services provided, to determine 

new services needed, and then begin the budgeting process for providing these services. 

We also needed to examine each community to 

determine if appropriate private providers existed 

to provide the services being generated. 

Obviously, the list of needed providers 

included physicians, dentists, nurses, PT, OT, speech 

and hearing, psychologists and dietitians, all of which 

are often lacking in both quantity and quality. This 

became our "hit list" for recruitment and retention. 

This also became one of our most difficult obstacles 

and currently remains a problem. 

A second issue of staffing is in having an 

adequate number of paraprofessionals who 

212 
could be hired at basic entrance levels and work 

with relatively complicated care issues on a day-today basis without burning out, by having the capacity 

and skills to perform within the individualized 

program plan. 

A third major, concern was for the integration 

and coordination between other institutional bases, 

such as, the school systems, local hospitals, local 

governments, departments or social services, 

departments of vocational services and State offices 

of aging, etc. 

Our conclusions at this point were that we would 

never have enough of either quantity or quality; and 

they always come in disproportionate amounts; and 

that the current fee for service is not flexible enough 

to capture the true cost of innovation; and therefore 

limits most services to mediocrity. We also found 

that the reward for doing a good job is often more 

regulation and paperwork that is a significant 

resource thief. 

INNOVATIONS — THE DELIGHT 

One of our earliest decisions was that there will 

never be enough of the appropriate staff available to 

handle the expansion of services we planned to do. 

Also, we realized the large amount of money we 

were spending in advertising wasn't producing 

significant results. We decided then to try to grow 

our own. We developed a 200-240 hour training 

curriculum that formed a standardized training 

package for all of our direct care staff. We then 

approached all of the community colleges through 

their continuing education department and/or where 

they already had a human services worker program 

and worked with them to develop a special tract in 

MH/MR that included our training materials. We told 

them of our recruitment needs and how this would 

be an excellent recruitment program for them in that 

this program could easily lead to employment. We 

now have active college programs which pre-train 

direct care staff for us. It is also a way for our current staff to turn their in-service training into 

college credits through life-learning contracts with 

the college. 

We also worked within our own system so that 

those students who were trained at the college could 

have a leg up in the hiring process or advance in 

pay scale faster than usual. 

Part of our negotiations with the colleges 

include a 6-15 credit clinical practicum which we

agreed to host. This allowed us to see potential 

employees and their work habits and gave them a 

real work experience in program concepts and client 

interactions. This has proved very beneficial and cost 

efficient. 

We also arranged some mutual exchanges for 

our staff to become professors and their professors to 

be teachers for other staff. We also exchanged other 

soft services such as training materials, library 

resources, etc. With the success of this program, we 

began widening our circle to other professions. As 

we gained academic credibility, we offered field 

placements, practicums, student teaching, internships 

and residences to all sorts of students. This included 

special education teachers, social worker placements, 

OT and PT trainees, speech and hearing students, 

graduate psychologists, etc. We began to see 

immediate benefits in that our staff became sharper as 

the students discussed current practice questions and 

the students improved their skill levels from this 

richer experiential base. We also found some 

wanted to work for us when they graduated. It took 

about 3 1/2 years for the program to mature. 

We currently are in draft stages of considering 

a rural medical program in which connections 

between two schools of medicine (Albany and 

Syracuse) will build into their programs an 

intern/residency in mental retardation which would be 

facilitated at our agency. We would see this as 

helping medical students to be more aware of our 

needs and services and may help us recruit 

physicians. By using our agency as a base, a 

teaching program would be established and experts 

would offer lectures, etc. to which local physicians 

could participate, thus bringing together a core of 

experts to help our current providers as well as 

bring new providers into the system. At this point, 

we have conceptual approval within central office 

and have had positive contacts with the academic 

portion and are beginning to recruit others to 

facilitate this process. Again, funding for this 

project remains a question at this point in time, but 

in keeping with our positive attitude we are 

proceeding as if the money will be there when 

we are ready. 

A SECOND DELIGHT 

We have several types of clients that are in need 

of more supportive help than others. They are 

people who are low functioning, multihandicapped, medically frail, explosive 

behaviorally and older. This is especially true when 

they are placed in a community-based program. 

1. Medically Frail — As we provide no 

acute medical services other than ongoing services, 

all acute care is responded to in a community as 

you would in your own home. The emergency 

rooms and general hospitals have several problems 

in addressing the needs of the above clients. We 

have found that by providing in-services, better 

transference of information and having some 

mobile crisis 

213 
teams with high levels of expertise available to meet 

or train their staff, services are more cost effective 

than sending specials to "baby sit" just in case 

something goes wrong, or not having a client 

admitted until the condition is morbid, or in having 

an early discharge which leads to read-mission. Here 

is a sample of some of the training required: 

a) Medication — The advisability of not 

giving neuroleptics to control behavior rather than 

working with the client. 

b) Feeding — Training staff so that they use 

appropriate specific therapeutic feeding procedures 

including positioning, allowing appropriate time for 

client to take in food, chew, swallow before giving 

more food, and appropriate social interaction. These 

procedures avoid aspiration, dehydration and 

malnutrition. 

c) General Behavior Problems — Know the 

philosophic differences in care. In general, our 

clients model the rhythms of the day, get up, go to 

work or school, etc. The routinization is not 

something we want changed and the clients don't 

accept change either. When they feel better, they 

get out of bed, straighten the room, take trays back 

and even get brooms out and start sweeping. To this, 

a general hospital labels our clients as disruptive, 

confused, and ultimately behavior problems. They 

fail to see the difference in the habilitative 

construct or to modify their institutional practices. 

d) Moving, Lifting, Transporting and Positioning — Some actions can wipe out a 

programmatic gain in three days. We have had 

fractures, bruises and malalignment problems. Our 

persistence in positioning has allowed many to sit 

upright and become mobile through wheelchairs 

only to see six months of work disappear after a 

short hospitalization. 

We now aggressively in-service and provide 

general teaching days for general hospitals and 

nursing home staff. Such titles include "How To Get 

Information From A Non-Responding Client", 

"Normalization and Humanization in an Institutional 

Setting", etc. 

2. Behavioral Problems — The unusual 

behavior problems that do not respond to behavioral shaping programs give us the most grief 

from the community. Those tend to be the low 

frequency but high intensity types. You can only 

tear up the local grocery store once. Self-abusive 

behaviors also fall into this class they shock the 

general public. I would like to report a huge 

success in these areas, but I can't — they still 

remain a problem. However, I can tell you some of 

the things we are doing that are having some 

impact. The formation of a talented crisis team who 

are mobile has turned many crises, that would have 

returned the client to the institution, into manageable 

episodes allowing the client to remain in the 

community. We have also attempted to turn small 

communities into learning labs. Community staff have 

gone to movie houses, grocery stores, malls, 

independent shop keepers and asked them to be part 

of a program to help clients gain community skills. 

Most stores are cooperative and when an incident 

occurs they are not offended by the incident. We also 

form neighborhood committees where residents of 

the neighborhood are part of an advisory council and 

help the management of the house in their 

community. Programatic ownership often dispels the 

myths, and we all profit. This is especially true of local 

governments when they see an economic gain and 

employment in their town, their tolerance for deviancy 

(difference) goes up. The clients get a better chance 

to practice life skills and obviously we shop at 

cooperative stores. Clients as consumers can have 

consumer power! 

3. Geriatrics — This is still relatively new to 

us, but with the advent of better medical care, 

nutrition, earlier identification of problems, our 

clients are living longer and are in need of 

specialized geriatric services. This would be one 

area for study and granting. The literature is still 

very sparse. We have just begun to work with our 

local offices of aging to integrate our clients into 

normal services for the elderly. Perhaps if I come 

back next year, I can have more information for 

you. One key we have identified is in preserving 

as much of a network as possible for our clients. 

We have done this to a point that in moving one 

client to a different part of the service 

continuum, we have moved up to three clients with 

him to preserve a social network of friends. We 

have also worked very hard at preserving as much of 

their mastery over the environment as possible, even 

if this means allowing two hours to eat! We also 

work with nursing homes along these same lines. 

We encourage staff to be creative in helping 

clients do for themselves, not to do it for them. 

This has been a very hard thing to get across when 

staff feel that there is pressure to do other agency 

things (mop, clean, do charting, etc.) within any 

given eight-hour shift. There is also pressure in the 

fee-for-service structure that when a client shows 

no progress, they want them moved to another 

level of care. 

With geriatrics, no progress is often significant 

progress for it means we have halted a regressive 

process. Thank goodness some of the revised 

regulations are reflecting this. 

214 
4. Multihandicaps — Thank God for the 

progress of science and electronic gadgets. There 

are so many things that can assist a multi- handicapped 

individual today. However, the expense is still often 

prohibitive, so you have to learn very quickly how 

to get it through the Medicare red tape jungle. I 

wish there would be a faster recognition of 

Medicare to technological advances that do improve 

the quality of life for clients. Let me share one 

inventive example. We have Clarkson University 

within seventy miles of our main campus. This is a recognized engineering school. With one especially 

perplexing problem we made contact with them, 

and asked if they would like to take us on as a special 

graduate project. The engineers did an excellent job in 

helping us. They designed a wheelchair you wouldn't 

believe. We now have an ongoing relationship for 

graduate students, not only in engineering but in 

business and psychology. They have been 

especially helpful in communication boards, 

adaptive equipment for active stimulation, etc. 

A THIRD DELIGHT 

With the closure of our institutional school 

system, all sorts of support was needed in working 

with local school boards, handicap committees and 

the teachers themselves. Here is an area in which 

special education programs could do a curriculum 

overhaul. Most special education teachers are not 

prepared for the level of clients now in their 

program. We adopted a consultative/collaborative 

relationship and provided mini-consultations, visits 

by experts and direct in-service training, as technical 

assistance. The training has been from care of 

ringworm to management of aggressive behaviors, 

from understanding wheelchair maintenance to special 

dietary needs, from managing pica conditions to 

toileting programs. These are also the activities that 

are hard to include in the fee for service schedule.

THE DILEMMAS: 

Our biggest dilemma is in robbing Peter to pay 

Paul for some of the creative things we've done. 

The fee for service structure does not allow for 

originality and creativity, but consists of only basic 

service components. If you have made a decision 

to go beyond basic services and want to improve 

the quality of life of a client there is no mechanism 

to do so. Let me graphically show you what we 

attempt to do. 

We, as a care/service agency, believe in 

certain treatment values and within those values 

the benefit of the care or service over time can be 

cost effective. Between points A and B is where 

current policy and regulations fail us most. This is 

where start-up and often front-end loaded projects 

fail to get off the ground. This is where we need 

more grant originality for projects like our rural 

medical plan, or for mobile dental clinics or 

long-term training grants to help us grow our own 

expertise. 

I do want you to hear that many things can be 

done to improve the quality of life for retarded 

citizens within the spirit of cooperation and 

collaboration with little resources, but I also want 

you to hear that you can't provide services where 

there are no resources and that offering second rate 

services as better than nothing is not acceptable to 

us. Unit costs do concern us, but not as much as the 

dedication to the value to improve the quality of 

services provided. 

2. A second dilemma involves clients with 

multiple problems (diagnosis) who we can place 

in a program based on client needs, but do not fit 

the approved level of care for ICF, SNF, etc. For 

example, clients who meet most of the ICF 

regulations, but because of medical frailty cannot 

participate in regular day programming so that 

criteria standards are met, or because of aging are 

self-preserving for 10 out of 15 days, or a child 

who ages out of a profitable school program. How 

do you count a therapeutic intervention that does 

not ring an auditor's bell? 

3. A third dilemma is transportation. There is 

little to no public transportation available in the North 

Country. While clients are still being seen and do 

make all appointments, this is an expensive burden 

the agency must absorb. As there are no major 

medical centers in our area, special consultations 

often involve a four to five hour drive to receive 

service. In fact, simple consultations often involve 

up to two hours of travel for every hour of service 

provided. 

We have developed satellites of outpatient 

services, provided vans and automobiles to our 

houses, arranged to bring consultants to convenient 

meeting spots, etc. However, this is not adequate 

and cannot always be reflected in the fee for service 

provided. 

We see little resolve in the future. There is some 

movement toward mobile services. For example, 

two hospitals that are sixty miles apart have bought a 

mobile cat scanner and it travels between the 

hospitals. Perhaps some other innovative mobile 

services could be provided in the future. A good 

example of this would be a mobile unit of 

habilitative/rehabilitative experts that includes OT, 

PT and speech and hearing staff and equipment that 

visits specific sites on a monthly basis. We have also 

talked about 

215 
a mobile dental clinic, which is certainly a very high 

need. 

Well, these are some of the delights and dilemmas of our system of service, and if there is a 

summary, it goes like this: 

1. We spent a great deal of time and management energy in preparing staff to believe in client 

centered services. 

2. To become a service oriented agency by 

answering every call, saying yes as much as possible, 

saying no as little as possible and responding to even 

little events which diffused situations, before huge 

resources were consumed. 

3. By rising expectations of clients and staff 

and having faith that people will respond positively. 

4. Grow your own — training and networking, through consortiums, collaboration and 

cooperation can work. 

5. Provide technical assistance to change 

dependency to independency. 

6. Change the fee for service to better reflect 

current unit costs. 

7. Advocate through alternative systems when 

your own system is unresponsive. 

216 
Citizen Advocacy Panel

MODERATOR: CURTIS L. DECKER 

PANELISTS: BERNARD J. CARABELLO 

GLENDA DAVIS 

COLLEEN A. WIECK, PH.D. 

TERESA SMITH 

MARGARET A. HOVEN, M.A. 

217 
SELF ADVOCACY 

by Bernard J. Carabello & Amy Bittinger, M.P.H. 

Director/Founder 

Self-Advocacy Association of New York 

New York, New York

I. History of Self-Advocacy 

Self-advocacy for people with developmental 

disabilities grew out of the Civil and Consumer 

Rights movements of the 1960s: 

Through their slogan, "Power to the 

People," black leaders forever altered the 

political landscape. They taught those 

perceiving discrimination to band together to 

advocate on their own behalves as the 

experts and owners of their conditions. 

Spearheaded by Ralph Nader, the Consumer 

Rights movement was officially sanctioned 

in a 1962 address to the House of 

Representatives by President Kennedy. He 

embraced "the right to be heard . . . to be 

assured that consumer interests will receive 

full and sympathetic consideration in the 

formulation of government policy and fair 

and expeditious treatment in its administrative 

tribunals." 

Encouraged, citizens with developmental 

disabilities, among others, pressed for their civil 

and consumer rights. It took a decade. But in 1973 

Congress passed the landmark Rehabilitation Act. 

In particular, Sections 501 through 504 of this 

Act banned discrimination on the basis of handicap, 

mandated affirmative action programs within the 

Federal government and organizations contracting 

with the government, and created the Architectural 

and Transportation Compliance Board. These four 

sections, comprising Title V of the Act, are 

popularly referred to as the Civil Rights Act for 

the Handicapped. 

Several provisions of the Act pertain directly to 

self-advocacy. Each state vocational rehabilitation 

agency is required to develop a plan showing how 

the views of consumers, as well as providers and 

other concerned persons, are being taken into 

account in policy making. Consumer participation 

for mentally retarded people is specifically spelled 

out in the Individualized Written Rehabilitation 

Program. 

Other legislation from this period recognizing

the value of self-advocacy and requiring it in 

various ways includes: 

Developmentally Disabled Assistance and 

Bill of Rights Act (Public Law 94- 103). 

Education for All Handicapped Children 

Act (Public Law 94-142). 

Title XX - Social Services (Public Law 

93-647). 

This body of legislation mandated consumer 

input at all programming levels and established 

consumer satisfaction as a means of assessing the 

quality, effectiveness, and appropriateness of 

services. 

Almost overnight, publicly funded institutions 

caring for people with developmental disabilities 

found themselves under intense scrutiny. Flagrant 

instances of inadequate care and abuse were 

uncovered. 

But funding to improve care was not forthcoming. Taxpayers, at this moment of history, were 

caught in the double bind of inflation and recession. 

Simultaneously, studies were beginning to 

document the validity of a new approach toward 

"treating" the developmentally disabled: 

normalization. This approach asserted that "the least 

restrictive environment" was the most conducive 

to the ultimate ability of those with 

218 
disabilities to become fully contributing members 

of their communities. 

For all these reasons normalization was embraced 

by Congress in legislation mandating opportunities 

for those with disabilities to be cared for in their 

homes and communities. 

Deinstitutionalization was the result. Thousands 

of people with developmental disabilities were 

released from institutions. In waves, they poured 

back into communities and families inadequately 

prepared to assist. They were unskilled at finding 

jobs and housing, unable to deal with prejudice and 

its side effect: low self- esteem. 

Then in 1973 in Salem, Oregon, one such 

handful of people banded together with three social 

worker advisers and formed a group. Their goal 

was to demonstrate to the world that they were 

"people first" and handicapped second. In so 

doing, they invented the self- advocacy 

movement for the developmentally disabled as it is 

today . . . based on the fundamental human right of 

all people to be considered first class members of 

society with a constitutionally guaranteed 

opportunity to achieve their highest potential. 

Thus, developmentally disabled people must 

secure their rights as consumers in order to help 

create the services and opportunities which so 

influence their ability to contribute. Self-advocacy 

is the proved effective route. 

H. Why Self-Advocacy Works 

Self-advocacy groups have been proved effective in three areas: 

1. Protecting Rights. When confronted with 

situations in direct conflict with the policies and 

procedures of their employers, service providers 

tend to side with those paying their wages rather 

than their developmentally disabled clients. 

Unfortunately, many developmentally disabled 

people don't know how to express a meaningful 

voice regarding the services they are to receive or 

are too intimidated to do so. This is true despite 

legislation requiring consumer input in the 

development and review of services created for 

them. The U.S. Senate, for example, in its report on 

the Developmentally Disabled Assistance and Bill 

of Rights Act, explicitly recognizes an inherent 

conflict between a State's role in delivering 

services and in protecting the human and legal 

rights of those served. Self- advocacy mitigates this 

conflict. 

In a recent national profile of self-help/self 

advocacy groups for people with mental retardation, 

71% were found to spend most of their time learning 

about rights and responsibilities. Special attention is 

focused on: 

Contributing to Individualized Program 

Plans - these are the written documents 

demanded by law which contain service 

goals, objectives, strategies, timeliness and 

evaluation measures and are supposed to 

include the developmentally disabled in 

their creation and review. 

Participating on advisory boards and 

planning groups for such service 

organizations as Developmental Disabilities Planning Councils, the local 

Association of Retarded Citizens, and 

public transportation committees. 

Learning to evaluate their own services. 

2. Demonstrating Capabilities. Parents and 

professionals tend to perceive themselves as 

benevolent benefactors for people who are 

retarded or disabled, frequently undermining 

opportunities for autonomy and self-worth through 

their good intentions. Self-advocacy, however, 

clearly demonstrates that people with 

developmental disabilities are capable of 

advocating for themselves. 

In a 1984 study underwritten by the U.S. 

Department of Education of over half the population 

of developmentally disabled citizens participating in 

self-help/self-advocacy groups, the findings were 

conclusive: 

— Over 90% of those surveyed met at least 

once a month for approximately one to 

one and-a-half hours. 

—An average of 23 people per group 

attended regularly scheduled meetings. 

— Meetings were structured, agendadirected, instructional and oriented to group 

vs. individual concerns. 

— Meetings focused on learning about 

rights and responsibilities, developing selfhelp skills such as finding jobs and the 

process of advocating or collectively 

speaking for their own rights. 

— Activities included social, recreational, 

recruiting, fund-raising and political. An

annual state convention was considered 

important. 

— Most groups elected their own presidents. 

— Advisors (those without disabilities who 

work as consultants on behalf of the 

groups) noted "moderate" to 

219 
"much" change in the majority of cases 

for personal, social and information skills 

among member individuals and observed 

group change in the areas of cohesion, 

interaction and communication, 

leadership role and organizational 

development. 

3. Creating Social Opportunities. Finally, research 

suggests that those with developmental disabilities 

who do not enjoy friendships and benefactors are not 

as personally or socially satisfied as those who do. 

This impacts negatively on social adaptation, 

contributing to stigmatization. Unfortunately, the 

research also shows that social opportunities for 

such people are generally limited. 

Self-advocacy, therefore, can fulfill this need, 

emphasizing the power of group members to assist 

one another rather than depending entirely upon the 

direction of professionals. The self-advocacy 

process includes: 

— Open and permissive communication with 

persons who have experienced the same 

condition. 

— Enhanced opportunities for socialization 

for those who are frequently isolated and 

alienated. 

— Learning coping abilities from peers who 

are successfully living with their 

conditions. 

— Experiencing intimacy vs. the "distance" maintained by professionals. 

— Learning from peer role models and 

reinforcement. 

In the course of participation in this process, 

members develop a strong sense of empowerment 

and competence. They often step forward as leaders, 

shedding negative self- perceptions. Through 

sharing with peers they see that the stigma and 

prejudice they feel is not their fault, but rather the 

result of society's ignorance . . . which can be 

changed. They learn how to band together to bring 

about such change. 

III. The Leadership of Bernard J. Carabello 

In their groundbreaking work on selfadvocacy, the University of Oregon's Rehabilitation 

Research and Training Center uses R.D. Hooper's 

historic model of social change to predict four stages 

in the successful march of a movement toward 

competency: 

PRELIMINARY STAGE. A period of restlessness and antagonism between groups, 

insufficient and ineffective efforts to resolve 

difficulties ... agitation without focus. 

POPULAR STAGE. Marked by collective 

awareness and initial attempts to organize, 

a charismatic leader steps forth to focus 

discontented, disorganized individuals and 

groups on more global problems and 

solutions. 

FORMAL STAGE. Ideologies are developed, values and goals are clarified, 

organizational structure gels, policies are 

articulated, specific programs are created. 

INSTITUTIONAL STAGE. The movement 

achieves competency, an accepted fact of 

society with efficient, deliberate, ongoing 

administration. 

Self-advocacy in New York State has arrived at 

the Formal Stage! 

Reason: The "charismatic leader" stepped forth 

to advance the cause and has created a structure for 

its fulfillment. This leader is Bernard Carabello. 

Creating opportunities for disabled people to take 

charge of their lives is the purpose of his. 

BIOGRAPHY 

Bernard was born with cerebral palsy. He has 

been told that doctors let his frightened, immigrant 

mother sit unattended too long in an emergency 

room where she had gone for help to ease the 

pain of premature birth. Three years later those 

same doctors misdiagnosed Bernard. They told his 

mother he was mentally retarded and advised her to 

place him in the Willowbrook State School on 

Staten Island. She did. He remained there for the 

next 18 years of his life. 

With nearly 6,000 inmates, Willowbrook 

typified the overcrowded, understaffed institution 

communities relied on to "handle the problem" of 

the developmentally disabled. 

Then in 1972, while Congress was debating 

landmark legislation which would create, for the first 

time, civil rights for disabled people, a TV news 

reporter aired a series of brutal exposes showing a 

nationwide audience the extent of abuse at 

Willowbrook. Geraldo Rivera was the investigating 

reporter. Bernard was his point man. It gained him 

his freedom. 

"I was starting a new life," says Bernard. "It was 

like being reborn. But I had to go through a lot of 

pain and hell." Since then, Bernard has transformed 

himself into a major force in the movement for 

self-advocacy in New York and across the nation. 

"Self-advocacy should not even exist. But society 

makes it exist," he says. 

In September, Bernard was a featured 

speaker along with Governor Cuomo at the 

official closing of Willowbrook, a cause he had 

fought long and hard for. He shocked reporters, 

220 
however, by refusing to gloat over the end of his 

bedlam. Instead he focused on the need to educate 

the public. The differences in people, including their 

disabilities, don't have to become handicaps. Bernard 

believes people who are treated as capable are 

capable. 

For this reason he is counting on the selfhelping and image-boosting strengths of local selfadvocacy groups. It's local group members who 

make the difference, according to Bernard. They're 

the only ones who can sell the movement to 

potential newcomers. But they don't get started on 

their own. Statewide planning is necessary to "seed" 

the effort. 

Bernard Carabello wants to make sure this 

happens. His experience, summarized on the 

following page, has prepared him for this task. 

IV. Policy Statement 

Self-advocacy means knowing your rights, 

speaking up for them, and exercising them. 

We believe self-advocacy should not have to 

exist; it goes against everything we believe in

because all people should be treated as human beings 

entitled to basic human rights. But, because society 

has difficulty accepting people with disabilities as 

human beings, we must develop more self-advocacy 

groups to make sure persons with developmental 

disabilities can get all that they are entitled to and 

grow to their full potential. 

As a start in the right direction, labels such as 

mentally retarded, retardates, mentally disabled and 

mentally handicapped must no longer be used. 

These labels keep alive the images of persons with 

disabilities as being crazy, idiots or totally 

incompetent. 

Society must stop concentrating on the 

limitations of individuals who may have difficulty 

learning, but concentrate on the positive aspects of 

people, look for and at the positive values of human 

beings who may incidentally have a disability. 

221 
Citizen Advocacy 

by Glenda Davis 

Executive Director 

Citizen Advocacy Inc. 

Grand Island, Nebraska 

CITIZEN ADVOCACY creates and supports 

relationships between citizens of a community and 

people who have a developmental disability and are 

isolated from the community or are otherwise AT 

RISK. 

CITIZEN ADVOCACY must belong to the 

community and must be independent of any 

Federal or State ties. If it does not belong to the 

community it is something else and is not CITIZEN 

ADVOCACY. 

In addressing the Forum Theme, in what way 

does the Federal/State Partnership assist or burden 

community services for mentally retarded citizens, 

I would like to talk to you about a gentleman who 

lives in Grand Island, NE In telling you about his 

life, I hope to explain the need for CITIZEN 

ADVOCACY programs and address the following 

pertinent questions: 

Are there certain characteristics of social 

security programs or other entitlements that 

help or hinder service delivery? 

Are there policy conflicts that hinder or, if 

resolved, would improve quality of care? Has 

Federal or State leadership changed public 

commitment or prejudice toward persons with 

mental retardation? 

Do conditions or participation in certain 

programs impede a continuum of care? 

In talking about community integration for 

people who have mental retardation, we were asked 

to address the above issues related to partnerships. 

These partnerships are governmental and service 

oriented. It is a closed network of partnerships and 

does not include the community nor does it include 

people who have mental retardation. If we are truly 

talking about community integration, we need to talk 

about partnerships within school buildings, within 

business and industry and within neighborhoods. 

This is where community is. 

In the last day and a half, I have heard words 

like; clusters, facilities, beds, special education, 

sheltered workshops, and day programs. These are 

not words of the community these are words of 

isolation and segregation. If we are really talking 

about community integration, we will begin using 

words like; home, neighborhood, church, school, 

and job. Let’s not talk about partnerships but about 

friendships. 

Now, let me tell you about Lafayette. He was 

born in Ravenna, Nebraska in 1938. When he was 

seven years old he was placed in the Nebraska 

School for the Deaf. The school is located in 

Omaha, 180 miles from Ravenna. He was there for 

eight years and was then transferred to the Beatrice 

State Home for the Mentally Retarded. He lived 

there until he was thirty- three. 

In 1971, he was moved by the system, back to 

Central Nebraska. He came to Grand Island because 

of a vocational rehabilitation program for 

independent living. Ironically, Lafayette was not 

mentally retarded enough to qualify for the local 

community based mental retardation services. He 

was given a brief period of training and then 

placed in a job. Unfortunately, the amount of 

follow-along and support provided was minimal 

and Lafayette has spent 17 years drifting from job 

to job and from one substandard living situation to 

another. 

I think it is important to add that in addition 

to having mental retardation and a major hearing 

impairment, Lafayette does not have the gift of 

speech and in spite of having spent seven years at 

the School for the Deaf, he does not sign nor 

read lips. It would be easy to assume 

222 
that his lack of communication skills have prevented 

him from being able to keep a job for any period 

of time. Most of his jobs have been well-meaning 

employers who out of the goodness of their hearts 

have offered him employment. Without any 

support to them or to him, the jobs are short-lived 

because he doesn't always understand what is 

expected of him and thus appears to the employer 

to be irresponsible and unreliable. He lost his last 

job in December of 1986 because he didn't always 

know when he was supposed to be at work. He 

was fired from and rehired for that particular job 

four different times. The employer was more than 

willing to give him a fair chance, but could no longer 

deal with the unreliability. 

In the last 17 years, alcoholism and diabetes 

have been added to Lafayette's list of disabilities. 

He is often the victim of streetwise people and has 

been robbed of both food and money frequently. 

The Grand Island Police Department is very familiar 

with his problems of victimization. The local bank 

has even cashed checks on an account that he once 

had with other's signatures on the checks. 

In the late spring of 1987, this situation came 

to the attention of the Citizen Advocacy office. In 

June, a gentleman was recruited who was willing to 

take Lafayette to apply for Supplemental Security 

Income and to be his conservator. The process was 

begun in July, 1987 and to date has not been 

completed. The complications of getting the 

necessary information from someone who has not 

kept personal records and who cannot speak and 

who has no available family member is a difficult 

process, indeed. Social Security required a hearing 

test but refused the results because the subject 

would not cooperate with the testor. A psychological 

evaluation was scheduled for him on Saturday, 

January 2, 1988 at 5:30 in the afternoon. The 

psychologist was traveling from North Platte, 

Nebraska, a town 138 miles from Grand Island. 

Lafayette was notified of this appointment by 

letter. The good doctor was ill on the day of the test 

and the notification of the rescheduled appointment 

was again sent to him by letter. Lafayette does not 

read. 

Since he has made application for Supplemental 

Security Income, he has existed month to month on 

Emergency General Funds from the Nebraska 

Department of Social Services. Each month his 

friend/conservator has to call Lafayette's landlord and 

ask for a letter of eviction. He then has to take it to 

the Social Services office so Lafayette's rent can 

be paid. Initially the utilities had to be incorporated 

into his monthly rent bill because Social Services 

does not pay these items separately. The landlord 

was somewhat reluctant and Lafayette's friend had 

to become quite persuasive in order to get that task 

accomplished. He has been receiving food stamps 

since July, so he is able to eat. He has had no cash 

for necessities like haircuts, shaving supplies and other 

personal hygiene and household cleaning products. 

Lafayette's new found friend, Charles, has had 

many opportunities to question the difficult system 

of services for people who are the least able to deal 

with them. He has frequently asked how people in 

Lafayette's situation are able to survive without a 

spokesperson and an advocate. The answer to that 

question is that sometimes they don't. He has also 

observed that the indignity of negotiating the services 

system may be as dehumanizing for Lafayette as 

being "ripped-off” by one of his neighbors. 

It would be hard to argue with that observation. 

In order for Charles to bring value and invulnerability to Lafayette's life, his ties and the ties of 

the Citizen Advocacy structure must be independent 

of the service system. The concept of Citizen 

Advocacy must belong to the community so that its 

citizens can regain a lost sense of responsibility to all 

of their neighbors. 

The President's Committee on Mental Retardation should pursue the insurance of financial 

independence for all people with mental 

retardation who live in the community. To insure 

true community integration, an emphasis must be 

made on partnerships in the community. These 

partnerships must be outside the existing "service 

system". Services are necessary, but are not the 

community. 

It is time to move beyond geographical location. People who live in the community can be 

locked into a network of services and, therefore, 

are not of the community. We suffer under the 

myth that an individual must be specially trained in 

order to be involved in the life of someone who has 

a disability. Therefore, we have lost faith in the 

competence of the community. Have we built a 

separate community within the intricate service 

system? 

223 
Advocacy and Community Integration 

From a DD Council Perspective 

by Colleen Wieck, Ph.D. 

Executive Director 

Minnesota Governor's Planning Council 

on Developmental Disabilities 

St. Paul, Minnesota 

The President's Committee on Mental Retardation has posed a series of questions for each 

panelist. The purpose of this paper will be to 

address three of those questions: 

 Do State agencies encourage or enable family 

members to affect the design of local services? 

 Do local school systems strengthen the role of 

families in special education? 

 Do families have a meaningful role in the interdisciplinary team meetings? 

In the first section, a new leadership training

project, Partners in Policymaking, will be described. 

This project encourages family members and 

individuals with disabilities to be involved in the 

design of local services. 

In the second section, two themes, integration 

and quality of IEPs, will be discussed including a 

description of flyers designed for families to use in 

influencing local schools. 

In the third section, the planning process will 

be described and how to improve the family's 

involvement. 

Finally, a set of recommendations will be 

presented for PCMR consideration. 

I. Do State Agencies Encourage or 

Enable Family Members to Affect the 

Design of Local Services? 

The purpose of this section will be to describe 

a new parent and self-advocate project sponsored 

by the Minnesota Governor's Planning Council on 

Developmental Disabilities. 

A frequent problem identified by advocacy 

groups is the lack of "young parent and selfadvocacy" participation in voluntary organizations. 

Several reasons are given for this lack of 

involvement including: 

 Young parents are guaranteed services for their 

children from birth to age 21 years. Young 

parents do not have to fight for services like the 

early parent leaders in the 1950s, 1960s, and 

1970s. 

 The structure of the family is changing. There are 

more single heads of households; there are more 

two-earner couples; and so volunteer activity is 

declining. 

 Self-advocacy has not been adequately 

supported. 

 Training programs have not been developed to 

meet the needs of young parents and selfadvocates. Conferences are aimed at topics of 

interest to older parents (wills, trusts) or to 

professionals. 

Partners in Policymaking is a program designed 

to provide information, training and skill building to 

consumers, parents, and guardians so that they can 

obtain the most appropriate state-of-the-art 

services for themselves and others. This is 

accomplished by delivering eight of two-day 

sessions to a limited number of highly motivated, 

interested participants. 

Partners in Policymaking involves and empowers people with developmental disabilities and 

their families in the policymaking arena. The 

program acquaints and connects people with 

organizations, opportunities, and possibilities in the 

area of developmental disabilities. The program 

educates the participants about current issues and 

state-of-the-art approaches. It also familiarizes 

participants with the policy- making and legislative 

processes in Minnesota. 

224 
The overall goal is to achieve a productive partnership 

between people needing and using services and those 

in a position to make policy and law. 

Each session of Partners in Policymaking is devoted 

to a specific service or level of government. The 

presenters are nationally known experts in their field. 

Participants are expected to complete assignments 

between sessions. Participants are also expected to 

work with a mentor who is, or was, a policy maker. 

The program is designed to give participants 

exposure to, and contact with, nationally known 

experts in the field of developmental disabilities. 

Participants attend two-day sessions, approximately 

eight times a year. During each of the sessions, experts 

in specific areas present and interact with the 

participants. Each session begins on Friday shortly after 

noon and concludes Saturday late afternoon. This allows 

time for the participants to converse with the experts 

in small groups or on a one-to-one basis. 

The topics include: history, philosophy, values; 

best practices in education; policy- making at the 

county and local level; policy- making at the Federal 

level; funding, rules, laws, policymaking at the State 

level; best practices in employment and living; and 

organizations, programs, and opportunities. 

As a result of being in this program, participants 

have acquired: 

 A knowledge of state-of-the-art services; 

 The ability to present a strong, well-reasoned case for 

the most appropriate state-of-the-art services for 

themselves or others to policy- makers, media, 

providers, and others; 

 A knowledge of organizations that are available to 

assist them to obtain appropriate state- of-the-art 

services; 

 A knowledge of the systems that fund and deliver 

services and how to influence the systems; and 

 The ability to represent their interests and the interests 

of others to policymakers. 

The impact of the leadership problems is as follows: 

 There is no leadership development program that will 

prepare persons for positions of leadership in 

local/State/national organizations. There is a need 

for new leadership to assume positions in these 

organizations. 

 Grass-roots advocacy leadership exists but has not been 

systematically trained on how to write, call, and 

meet with public officials. There is a need to 

have persons in the grass-roots advocacy 

movement in each community who can write, call, 

or meet with public officials when necessary or 

when requested through action alerts. 

 The young volunteer movement does not have a 

shared vision. Individuals need an opportunity to 

share and develop a collective vision. There is a 

need for motivated, well- informed, active 

(energetic) volunteers who share a vision about the 

year 2000. 

 There is no current mechanism for State and national 

leaders to meet with young parents and selfadvocates. There is a need for State and national 

leaders to develop a reciprocal relationship with 

young parents and self- advocates in order to 

discuss current problems and issues. 

 There is no speakers' bureau available throughout 

State. There is a need to have spokespersons 

available throughout the State who can speak on a 

wide range of issues. 

The impact of the problem on services is as 

follows: 

 There have been only modest incremental changes 

in family support. Minnesota has the third highest 

ICF-MR placement rate. Our State spends 99 

percent of its public funds to support State 

institutions and group homes. There is a need for a 

new group of people to advocate for family 

support as a basic entitlement and to push for 

reallocation of funding. 

 There is a high level of segregation in public 

schools in Minnesota. There has not been a major 

initiative in Minnesota for age-appropriate, 

community referenced, functional curricula in 

integrated settings. Minnesota has received a 

critical review from a Federal OSERS auditing team. 

 In order to advocate changes to match A New Way of 

Thinking, a new group of advocates is needed 

who: 

— share this vision; 

— are motivated; 

— are informed; 

— are skilled; 

— will speak up; and 

— will be leaders. 

Partners in Policymaking is a solution for 

leadership problems and service system problems. 

We hope this idea is replicated in all the States and 

territories. 

II. Do Local School Systems Strengthen the Role 

of Families in Special Education? 

If we were to issue a report card on P.L. 94-

142, we would give an: 

"A" for access for all students regardless of 

severity of disability; 

225 
"A" for preventing out-of-home placements 

of thousands of children and youth. 

 We cannot give A's in two subjects: 

 integration; and 

 quality of individualized education 

plans. 

Parents and students should not have to choose 

between integration and quality. Let me describe in 

greater detail each of these themes. 

Integration: The arguments against integration of 

individuals with disabilities are the same regardless 

of age, setting, or the year. Segregation can occur 

because of separate buildings or in regular schools 

if students are kept in isolation in separate halls, 

separate lunch rooms, or separate classes: 

 Placing students in regular settings with no 

support or the wrong support isn't 

integration — it's dumping. 

 Placing students in separate wings or 

separate clusters of classrooms isn't 

integration, it's tokenism. 

 Pitting one parent against another parent over 

the amount of resources to be expended for 

students isn't fiscal responsibility. It's dirty 

politics. 

Here are the typical statements made against 

integration: 

1. "It is not possible because these individuals 

would be the subject or object of ridicule, 

teasing, and harassment." 

2. "There would be dumping — placement 

without supports." 

3. "Segregated settings provide superior 

services because the students are with 

specially trained professionals." 

4. "Therapy services can be delivered more 

efficiently in a segregated setting," 

5. "It is more cost-efficient to have individuals 

congregated together. There is an economy 

of scale." 

6. "We can't do it, we don't know how." 

7. "Students need to be in segregated placements 

to get ready for less restrictive settings." 

8. "There is stability and security in special 

buildings and special classes. Our rules and 

regulations tell us how to operate." 

As a counterpoint to these statements, here are 

the arguments used in support of integration: 

1. "Ridicule and teasing come from separation." 

Friendships and relationships start early in life. The 

earlier integration occurs, the better to enable 

both students with and without disabilities to 

benefit from friendships/relationships. 

2. "Least restrictive environment is the right of the 

students with a disability." Supports should be both 

integrated and appropriate to avoid dumping. 

Students and families should not have to choose 

between integration and quality. 

3. "There is a difference between placement and 

program." Often the concepts are intertwined. By 

attaching services with buildings, the intent of 

P.L. 94-142 is violated. Placement means level 

— whether it is a segregated or integrated settings. 

Program means type and amount of supports. It 

is possible to be integrated and to have an 

appropriate program. Integration can only begin 

in regular schools and regular classrooms — where 

opportunity exists for interaction. 

4. "Therapy services can be delivered efficiently 

wherever the student is located." The new approach 

to delivery is to teach other staff to teach the 

student when the opportunity is correct and to 

make the supports relevant and functional. 

Students and families should ask four questions 

about delivery of therapy services: 

— Who can provide services? Program staff, 

parents, and peers of same age who are not 

disabled. Remember the lessons of modeling 

people learn by imitation. 

— Where are skills taught? Teach skills in natural 

settings where the skills are needed or will be used. 

Natural settings offer opportunity for policymakers of today and the future to be with 

individuals with disabilities. 

— When are skills taught? During the school year 

or year round? During school hours or during off 

hours? 

— What skills are taught? Use functional materials, 

assure that plenty of time is allowed to learn 

skills, provide many opportunities to build new 

skills and new experiences. 

5. There is no evidence to suggest economy of scale. 

There is evidence of disincentives for integration. 

Depending upon how special education is funded, 

there may by incentives for segregated classes. 

6. "We can't do it usually means we won't do it." The 

"how to's" exist, but schools and teachers may 

not be up to date on the emerging technologies. 

226 
7. "Pre means never." Placement rarely exists 

to get students back to integrated settings once 

they have been segregated. There are often 

preprinted reasons on IEPs for placements in 

segregated settings. 

8. "Stability and security exist with mandates, 

funding, advocacy, and vigilance." Parents have 

the power. Parents must understand the rights 

they have and exercise those rights. 

We need to hold schools accountable to that 

single standard of honor of least restrictive environment. 

There must be consequences for performance — there 

must be rewards for good performance, and there must 

be sanctions for nonperformance. 

Students and families are encouraged to use a flyer 

produced by the Minnesota Governor's Planning 

Council on Developmental Disabilities entitled Test 

Your School's IQ: Integration Quotient to 

determine the extent of integration practices in local 

schools: 

ADMINISTRATIVE COMMITMENT: 

1. Has the school administration taken a position 

emphasizing preparation of students with 

disabilities to live and to work in community 

settings? 

2. Has the school administration demonstrated 

leadership in promoting integration of 

students with disabilities through letters, 

written materials, building accessibility, 

presentations, conferences, scheduling 

flexibility, or written plans? 

3. Have administrators, teachers, related services 

staff, paraprofessionals, etc., received in-service 

training on integration values and 

implementation techniques during the past 

year? 

LOCATION/TRANSPORTATION: 

1. Does your son/daughter attend the same school or 

other natural setting (early childhood center, 

job site) that he/she would attend if not 

disabled? 

2. Does your son/daughter use the same 

transportation that he/she would ride if not 

disabled? 

3. Does your son/daughter use the same arrival and 

departure times if he/she were not disabled? 

INTEGRATED TIME AND ACTIVITIES: 

1. Does your son/daughter participate in extracurricular activities with students who are not 

disabled? 

2. Does your son/daughter spend time in the 

community receiving instruction, services, or 

other activities (independent living, leisure, 

job)? 

3. How much time during the instructional day 

does your son/daughter spend with students 

who are not disabled? 

4. Does your son/daughter participate in 

activities with students who are not 

disabled? Check those that apply: 

— lunch; 

— library/media center; 

— free time; 

— assemblies/programs; 

— regular classes (art, music, physical 

education, electives); 

— vocational education; 

other. 

5. Does your son/daughter receive support in

settings with students who are not disabled? 

Check those that apply: 

— modified curriculum; 

— peer/buddy support; 

— adaptive equipment; 

— support staff; 

— augmentation/communication devices; 

— testing accommodations; 

— interpreter; 

— other. 

QUALITY INDIVIDUALIZED EDUCATION 

PROGRAMS 

In a humorous approach to reviewing the 

quality of IEPs, several individuals such as Phil 

Ferguson, Barbara Wilcox, and Barbara Troolin have 

categorized plans in the following ways: 

1. The McPlan: Over 30 billion are served with 

identical ingredients or slight variations (hold 

the pickle — hold the physical therapy): 

— You can walk up or drive through to get 

your portion; 

— All the items on the plan (fine motor, gross 

motor, receptive language) are 

prepackaged,premeasured,preweighed, 

and are just sitting around waiting to be 

warmed up; 

— Anyway you like it requires more 

time; 

— The team is happy to deliver with 

smiling faces saying "have a nice day." 

2. Wheel of Fortune: 

— As a family member contestant, you guess 

at programs that are not terribly important: 

S T R N G 

B D S 

— You may need to buy vowels to fill in 

"string beads." 

— You can spin the wheel; and depending 

upon your luck, you can 

227 
hit one of several options — "call Legal 

Advocacy"; "we would be happy to help 

you"; "move to the suburbs"; "of course, 

we will do that." 

3. Back to the 50s: Back to the 50s 

influence is everywhere — music, art forms 

(flamingos), colors (mauve, aqua, pink), 

sunglasses, haircuts, and even IEPs: 

— You can learn to label the parts of a 

standard phone; 

— You can tie shoelaces on a simulated board; 

— You can make change for a dollar, 

although no one can eat in a restaurant for 

under a dollar. 

4. Advanced Algebra: This mathematical

 approach gives the impression of 

precision, soundness, and well-written 

objectives that are meaningless: 

— Cindy will jump with 50 percent 

accuracy. 

— Bryan will say cup 10 times. 

— Peg will butter 35 percent of her 

bread. 

The curriculum at the local level must prepare 

students for living, working, and enjoying life in 

the community. Parents are winning the war of 

inches by demanding that school activities must be ageappropriate, must provide opportunities for 

interaction with non-handicapped peers, and must 

have tasks that are functional. We can no longer have 

classrooms called "preliving," and we can't have 

behavioral psychologists characterize friendships as 

"reciprocal horizontal interface." 

The Minnesota Developmental Disabilities 

Council has published another flyer to assist students 

and families in assessing the quality of individual 

plans. The questions include: 

AGE-APPROPRIATE: 

1. Would these materials be used by a nondisabled person of the same chronological age? 

2. Would these skills be performed by a nondisabled person of the same chronological age? 

COMMUNITY REFERENCED: 

1. If objectives are met, will there be 

participation in a variety of integrated 

community settings? 

2. Are objectives meeting basic skills needed 

in the future? 

FUNCTIONAL: 

1. If the person does not learn skills 

described in the objective, will someone else 

have to do those activities? 

2. Do the activities involve mutual interaction 

with nondisabled peers? 

GENERALIZATION: 

1. Are skills taught or performed with natural 

cues and reinforcement? 

2. Are the skills taught in the natural settings 

where they will need to be performed 

(home, community settings)? 

CHOICE: 

1. Are the objectives based on a comprehensive 

assessment that emphasize strengths of the 

individual? 

2. Do the objectives reflect individual's 

choices and interests? 

3. Do the objectives reflect family's 

choices and interests? 

III. Do Families Have a Meaningful Role in the 

Interdisciplinary Team Meetings? 

There are four components to the interdisciplinary 

process: assessment, planning, implementing, and 

evaluating. 

ASSESSMENTS 

Professionals have been trained to write 

assessments that tend to be very oriented to needs, 

deficits, problems, or negative statements. Anyone 

can pick up a case record and read a summary of 

physical condition, family history, problems, 

diagnoses, what the person doesn't do in the 

developmental sequence, and then at the end, there 

may be one or two sentences — Joe has a good sense 

of humor or Mary likes people. 

Let us think about this assessment 

approach. 

Every employee has a performance appraisal 

at least once a year. Performance appraisals even for 

people we do not like tend to be fairly positive. We 

probably work our way through a performance 

appraisal and then say, "Oh, by the way, could you 

please show up for work?" or "I don't want to 

mention it, but could you please stop stealing from 

the company?" 

Perhaps all keynote speakers should be 

introduced in the same way we write about 

individuals with disabilities. Picture one of our national 

leaders described in the following way. Today, our 

keynote speaker is: 

Male, Caucasian, who is overweight, has 

hypertension, is on a low calorie diet, is 

228 
currently on medications, has occasional 

outbursts according to his family, and needs to 

control his temper tantrums according to staff 

members. 

Our guest speaker enjoys eating and drinking 

coffee. He does not sleep well at night. (He 

slept through the entire night only 94 percent of 

the time last month. 

Staff report that he needs to be provided with 

activities to keep him busy, but he does have 

difficulty adjusting to change in his schedule. 

He needs to have his hair cut short to prevent 

him from pulling it out. 

He needs help in choosing appropriate attire 

for social engagements. 

When he thinks no one is watching, he 

entertains himself by blowing fuzz balls 

around on his desk. 

All of these statements are direct quotations from 

case records. Compare these statements with the 

typical glowing introductory remarks about keynote 

speakers. 

Parents already know the written word is 

devastating. Professionals must be sensitive to this 

important lesson. 

The challenge for all of us is to build on 

strengths; to write statements that you would say 

about yourself or family members; to get away 

from describing people in terms of stacking, 

stringing, and pointing behaviors to functional 

approaches. We need to know what can this 

person with a disability do in the regular 

environment? 

The challenge is to read books, listen to 

speakers, and experiment with a different 

approach to assessment that is more functional. 

PLANNING 

In the old days, we had one person in 

charge, usually a medical doctor who would 

prescribe what would occur to individuals with 

disabilities. We would refer to that person as God 

or Dr. God depending upon preference. 

The medical model did not work. Other 

professionals had a stake and different view of the 

person and what should be occurring. A team was 

created. The team formed, and the team grew, and 

now we have the Cecil B. De Mille approach to 

planning with thousands of people sitting around a 

table, each with a part of the script to recite. After 

the script is ended, the spotlight goes on; and 

everyone turns to the end of the table to the 

individual with disabilities and his/her family; and the 

chair of the team says, "Now, what do you think?" 

The challenge today is to make the team 

approach work without intimidating every 

individual and family. First, can the size of the team 

be reduced? If not, can the room be filled with 

relatives, friends, and advocates so the balance of 

power is shifted back to the individual and the 

family? Second, can jargon be eliminated? 

Through peer review, can team members become 

sensitive to the language problems? Third, can a 

positive, strength orientation replace the typical 

negative approach of team meetings? Can we 

reorient our approach to a positive approach? 

IMPLEMENTATION 

At the forefront of the implementation are two 

words — respect and dignity. We have all lived 

through several phases of special education such as 

gross motor, developmental, and behavioral. 

Each of these special methodologies led us down 

a path of activities and tasks that may not have 

given people respect and dignity. During those 

periods, we did not think about what people 

needed or what people wanted. We did not think 

about styles of learning — some people learn 

best through sensory/tactile means. Some learn 

intellectually, some learn through emotional 

experiences, and some through psychomotor 

approaches. 

Implementation will be revolutionized by the 

use of technological aids and devices in 

combination with our human resources. New 

technological advancements will allow people to 

communicate for the first time in their lives; to 

move around their environment; and to read, 

write, and handle arithmetic problems with 

personalized computer devices. 

The challenge will be to keep up to date, to track 

down resources, to assist people to be as independent 

as possible by modifying the environment. Parents and 

professionals must keep up to date and know what is 

possible. 

EVALUATION 

At the top of the list of evaluation criteria 

should be friendships and relationships for 

individuals with disabilities. In addition to this 

criterion, are the items listed in the previous 

section of this paper. 

RECOMMENDATIONS 

1. What needs to be accomplished at the 

Federal level to achieve integration, 

independence, and productivity while 

providing support and protection for those 

who need it? 

In a few short years since we were all 

introduced to the theory of trickle- down 

economics, advocates have become quite 

fluent in discussing the economics of 

inclusion, not exclusion; the economics of 

integration rather than segregation; and 

229 
the economics of productivity, not inactivity. 

Funding must match policy. At the Federal 

level, we need to reallocate funds from 

institutional settings to community integrated 

supports. The funding shift must occur in 

Medicaid. PCMR should endorse S.F. 1673 and H.F. 

3454 and work toward passage in 1989. 

2. What is the specific role of the Federal government 

in promotion of maximum community 

integration? 

The year 1987 was the 200th anniversary of the 

Constitution, and isn't it amazing that we continue 

to talk about fighting for rights of people with 

mental retardation? These individuals seem to be the 

last to be accorded rights and the first group to 

have their rights threatened. 

Persons with mental retardation cannot be 

abandoned. At the Federal, State, and local levels, 

we must use: 

— legislation, 

— litigation, 

— agitation, and 

we also need to bury dinosaur practices. 

There is a clear Federal role for rights issues. 

We need a single standard of honor to assure 

respect and dignity for people regardless of any 

label carried or any place of residence. 

We must hold state and local entitles 

responsible to eliminate violations of human, civil, 

or legal rights. 

In 1985, Senator Lowell Weicker released a 

lengthy report describing institutions for people 

with mental retardation or mental illness. These 

facilities were heavily regulated, licensed, or 

certified. Yet, the descriptions of conditions were 

reminiscent of the 1950s: 

— isolation; 

— depersonalization; 

— overmedication; and 

— neglect and abuse. 

As a result of that report, the Federal role in lookbehind audits was increased. Monitoring efforts must 

be in place, but we will always be concerned about 

the qualifications and training of any Federal 

monitor. 

Monitoring should reveal who is doing a 

good job and who is not. Those who are should be 

rewarded; those who are not should have sanctions 

imposed. 

3. What are the specific technical assistance 

recommendations to be included in a technical 

assistance manual for design, delivery, and 

evaluation of exemplary program models to 

promote community integration? 

Before preparing a technical assistance 

manual, the authors need to be clear about, 

"What do people with mental retardation 

want?" 

— People with mental retardation want to be 

treated and addressed as people not "the 

retarded," and not "the disabled." 

— People with mental retardation want to 

live in their own homes, not in concrete 

dormitories with hundreds or dozens of 

other people. 

— People with mental retardation want love 

and friendships, not paid care- giving. 

— People with mental retardation want 

continuity in their lives, not hundreds of 

hands touching them because of shift 

patterns or staff turnover. 

— People with mental retardation want 

respect and dignity, not treatment as objects 

of abuse, charity, or pity. 

— People with mental retardation want 

access to opportunities, the right to 

make choices, and the opportunity to 

answer four questions — I need, I want, 

I like, and I dislike. 

— Children with mental retardation do not 

live in institutions in a civilized society, 

and that is why national advocacy 

organizations have passed strong resolutions 

supporting children living with families. 

PCMR needs to make strong statements 

regarding self determination. 

In 1950, Mildred Thomson gave her President's 

speech at the American Association on Mental 

Deficiency Convention regarding the need for 

Association for Retarded Citizens: 

There is a need for unity, for working 

together, and building bridges over chasms of 

prejudice, ignorance, and indifference. 

We must work with parents — parents are 

highly motivated and are most effective is 

pressuring public officials for programs and 

research funds. 

Her advice is still valid today. 

230 
Self Advocacy 

by Teresa Smith 

Garden City, Michigan 

I wish to thank the President's Committee on 

Mental Retardation for inviting me here today. I am 

real excited and nervous. I couldn't believe I was chosen 

and feel honored for this great opportunity. 

In Michigan, many groups and individuals have 

helped people with developmental disabilities to speak up 

for themselves. They have also encouraged people to 

become more involved in the community. Consumers, 

mental health agencies, service providers, local support 

groups and others have worked together to think of 

new ideas. As a result, some really good things have 

happened in Michigan and the metropolitan Detroit area. I 

will talk about how a number of organizations have 

helped consumers become better advocates. I will also 

tell you about my own personal experience. 

I lived at home with my parents until I was twentysix years old. Before leaving home permanently, I did 

live at Hawthorne Center in Livonia, Michigan for 

one year. When I was about nine years old I also lived 

at Our Lady of Providence in Northville, Michigan, at a 

private school, for a year when I was about twelve years 

old. 

During my years at home, I attended school and was 

involved in various training programs. 

I also held two "real" jobs. One was at a nursing home 

doing dishes and laundry. The other was at Detroit 

Quality Brush. I worked there very successfully for two 

and one half years until my seizures became 

uncontrolled. The company was fearful for my safety 

and didn't want to continue to allow me to work. 

I moved into Community Opportunity Center's 

Plymouth House located in Plymouth, Michigan when I 

was twenty-six years old. This is a group home for 

sixteen adults, eight men and eight women. I shared 

a bedroom and we did many things as a group. I liked 

living in this group home because I was with my 

peers. We had the opportunity to do many different 

activities and go places I had never been before. 

Because my parents tended to be over protective, I had 

not had these experiences while living at home. As 

time went by, I felt more confident and began to do 

more on my own. 

While living in the group home, I became involved 

with an organization called People for Independence. 

People for Independence was formed in 1980. It was 

initiated through the efforts of the Northwest 

Communities Association for Retarded Citizen to 

encourage people with handicaps to become more 

independent. At our People for Independence 

meetings, we discussed what we could do to help others 

with the same problems. These group discussions also 

helped one feel more confident in talking about my 

problems. During my involvement with People for 

Independence, I also began to speak to other groups 

about self-advocacy and being independent. During the 

past six to seven years, I have made many 

presentations to various groups. 

At the end of one year at Plymouth House, I 

moved into a semi-independent apartment setting 

called Whole Life. Again, I shared with a roommate, 

but we were much more on our own. We had to do 

our own shopping and arrange our transportation. 

However, staff were available on a 24-hour basis. We 

also saw them a few hours almost every day. They 

helped us plan meals, activities, do grocery shopping and 

learn to manage our money. 

After six years of the Whole Life Program, I 

realized I was ready for even more independence. 

231 
I had heard about the Supported Independence 

Program. This program is funded by the Michigan 

Department of Mental Health. Supported 

Independence Program gives people the help they 

need to live as independently as they can. People in 

Supported Independence Program live in small 

homes or apartments. Each person has their own 

bedroom. No more than three people live in one 

home. Typical services to help include staff, 

transportation, counseling or medical support. I live 

in a three bedroom home in Garden City. I have 

one housemate, Sharon. We have one cat and one 

bird. 

Sharon and I saved our money to buy everything 

we needed except for appliances for our home. 

The State could have brought the furniture. I am 

proud to be able to say these are my things. I own 

them. Sharon cuts the grass. I rake leaves, grass, 

pull weeds and we share household chores. We 

split the bills. I write the checks. 

I like living in a Supported Independence 

Program because I can do my own thing and make 

my own decisions. There is less confusion and we 

are part of a regular neighborhood 

rather than a segregated program. I work as a 

secretary/receptionist for A. R. Home, Inc. 

I have been there for three years. Since I moved into 

my home, I have become better at bookkeeping, 

cooking skills, bargain shopping, and 

communication on the phone. 

I enjoy my independence, but it is a struggle 

sometimes, too. Transportation is a big issue for me. I 

have to call a transportation service to get a ride. I 

have to plan these rides one week in advance. 

That is hard to do. Sometimes something comes 

up and I cannot give them enough notice to get a 

ride. Then I walk or call for a taxi. Some of my 

friends use wheelchairs. When they cannot get a 

ride, then they are really stuck. It is harder for them 

to find people to give them rides. 

Another big issue is Social Security. Sometimes 

people with disabilities can get a job but they are 

afraid to go to work because they lose their 

benefits right away. I do not receive any Social 

Security because my epilepsy is not severe enough. 

The government feels that I could work at a 

regular job. Yet employers do not want to hire me 

because of my seizures. The job I have is a 

trainee position. My employer gets funding through 

Wayne Community Living Services to train me. 

Without that funding I would be sitting at home. 

My paycheck barely covers the bills. I do not feel 

this is fair for me. I fall in the cracks. I am not 

disabled enough to get the Social Security, but 

employers will not hire me because of my 

seizures. 

As people like me moved out of group 

homes, a group of people who believed in 

independence began to get together in 1982. They 

became the Interdependent Living Council. 

Department of Mental Health Agency representatives, 

service providers and consumers make up the 

Interdependent Living Council. In 1985 they 

sponsored their first consumer conference. They 

called it "Making It On Our Own." About fifty 

people attended. Each summer a conference has 

been held. More and more people from across 

Michigan came to the conference. It is now called 

"We're Making It On Our Own." At the 1987 

conference, approximately 250 people attended. I 

have attended four conferences. Last summer I 

was a workshop moderator. I like to go because I 

like meeting new people and seeing people I have 

met over the years. 

The 1987 conference had more than twenty 

different workshops. Each workshop is moderated 

by a consumer. Some of the workshops are run by 

a consumer panel and moderated by a 

professional. We meet new people, see old 

friends and learn more about ourselves. 

Consumers are encouraged to speak up. For some 

people, it is the first time they have spoken in 

front of a group. 

Back in 1980, another network of people were 

getting together. They were public relations 

people from Michigan Department of Mental Health 

agencies, Executive Directors of local Association for 

Retarded Citizens and some service providers. They 

became the Awareness Communication Team for 

Developmentally Disabled. They wanted to 

promote what is good about group homes. Each year, 

they have highlighted the successes of community 

living by holding an awards luncheon. They give 

awards for Statewide Awareness Leader of the Year 

and Local Awareness Leader of the Year. 

Neighbor of the Year awards go to neighbor of a 

group home and to a group home that has been a 

good neighbor. They give awards to the media for 

good news coverage. They also give awards to 

consumers. This award is called the John Furtaw 

Inspiration Award. It goes to someone who made a 

contribution to their community. I received an 

honorable mention in 1986 and won this award in 

1987. I was nominated because I am a board 

member of the Northwest Communities Association 

for Retarded Citizens, also a board member for 

Community Opportunity Center, serving on the 

advisory board for Wayne State University's 

Developmental Disabilities Institute and a member of 

the Ladies Auxiliary of the V.F.W. Post 6695. 

Sometimes I am so busy I think I am burning the 

candle at both ends. 

In 1987, Awareness Communication Team/ 

Developmentally Disabled held a public hear232 
ing on the need for more homes. More than 200 

parents attended to testify that their son or daughter 

needs a group home. Three members of the 

Consumer Advisory Committee testified at the 

public hearing for more homes. 

The Consumer Advisory Committee was 

organized through Wayne Community Living 

Services in 1984. Wayne Community Living 

Services is a Department of Mental Health 

agency that provides housing for people with 

developmental disabilities. The Consumer 

Advisory Committee runs a Peer Support Project and 

speaks out for people with developmental 

disabilities. The members live in Supported 

Independence Programs and group homes in the 

metropolitan Detroit area. I recently joined the 

Consumer Advisory Committee. 

In Peer Support Project, committee members 

visit people with developmental disabilities in group 

homes and Supported Independence Programs. 

Committee members meet with the home residents 

and their staff. They talk about how to help each 

other and how to make independent decisions. 

The committee is very busy. They have 

spoken to local Association for Retarded Citizens and 

ran a workshop. One person on the committee 

recently was appointed to a committee on the State 

Developmental Disability Council. Another person 

sits on the Independent Living Council. Two 

members sit on the Wayne Community Living 

Services Citizens Advisory Committee. They will 

speak at the Michigan Chapter of the American 

Association on Mental Retardation next month. I plan 

to go with them. 

Most of the programs that I have been talking 

about came about because people talked to each other 

and shared ideas, dreams and goals. People working 

in the field of developmental disabilities formed 

groups and worked together to benefit people with 

developmental disabilities. 

The Supported Independence Program is a State 

funded program. People should look at what we 

have done in Michigan and encourage other states to 

develop their own Supported Independence 

Programs. I brought some pamphlets and people 

should look at our organizations, like the 

Interdependent Living Council, the Consumer 

Advisory Committee, People for Independence, and 

Awareness Communication Team for 

Developmentally Disabled and try to make those 

groups develop in other states. It is a matter of 

people working together. 

I would like to thank you again for the 

opportunity to speak with you today. 

RECOMMENDATIONS 

I can tell you about my own experiences as a 

person with a disability. In the most part I have 

been a very lucky person. The Department of Mental 

Health of the State of Michigan has helped me out 

numerous times and still does. My biggest 

advantage was having Dr. Harold Wright from 

Hawthorn Center in Northville, Michigan. He 

guided my footsteps along the way. He helped me 

to cope with my disability. He was always making 

sure I had every opportunity to get into work shops 

and skill centers. He also made sure that I had the 

chance at an education and to have medical attention 

for my seizures and other medical problems. 

Now I receive help from the State of 

Michigan. I do work and receive Pr over 

minimum wage, but it isn't enough to make rent, 

food, utilities and personal care needs. 

I am grateful for the Mental Health Department 

for the supplements from Wayne Community Living 

Services. My only wish is that every one would 

have the opportunities to learn as I have. 

I disagree with the way Social Security, 

payments are made to clients. I know of people that 

are in need of the Social Security money and can't 

get it. I have been told that they test too high. 

While others receive and are capable of working 

and performing much better than some of my 

peers. It is hard to understand. 

Maybe Social Security should go back to 

those that retire. A special fund should be set up 

with more equal guides for everyone. This could be 

paid for by a national lotto or cuts in the defense 

spending and aid to countries that are our enemies. 

I enjoyed the President's Committee on 

Mental Retardation forum. I would have liked to 

be able to hear all of the panels. I understand that 

this would be hard and costly to have the panels 

on different days or times. 

Thank you for the opportunity to have been a 

part of this forum. 

233 
Volunteers with Severe Mental Retardation 

by Margaret A. Hoven, M. A. Executive Director 

Life Skills Center 

Washington, D. C. 

The Life Skills Center is a small day program in 

the District of Columbia serving 13 adults with 

severe and profound mental retardation. The 

Center began in 1974 in an attempt to offer 

training to adults with this level of mental 

retardation, adults, who were left sitting at home 

because they had "no vocational potential." At that 

point, even if an adult was young enough and 

lucky enough to have received some kind of public 

education, the only training available after the age 

of 21 was through Vocational Rehabilitation, and they 

took only higher functioning people. 

The Center began with free space, donated 

materials, a budget of $1,800 and a lot of faith. The 

dream was to offer our students training in 

everyday living skills which would enable them to 

be more independent. This wider independence 

would help not only the student, but also reduce the 

tension and burden at home and, thus, help enable 

the family in its effort to stay together. The idea was 

to offer these skills with respect in a home-like 

setting, in a neighborhood where shopping and 

services were available. 

The fact that we are small is very deliberate. We 

believe that the students learn better in a small 

setting where they can receive large amounts of 

individual attention and can develop a sense of 

community, of belonging. We also believe that a 

small setting is a far more pleasant place to spend 

such a large part of each day. The fact that we are 

small also enables us to be flexible and adapt more 

easily to the needs of each student and their family 

because we get to know everyone more intimately. 

Part of the Center is set up in a very homelike 

manner with a kitchen, dining room, living room 

and bedroom. It is here that the students learn and 

maintain he skills We plan, shop and prepare meals, 

set tables, clean up the kitchen, sweep and mop 

the floors, clean the bathroom, learn self-care 

skills, make the bed, dust. Each student also learns 

functional academic skills, such as printing or 

recognizing his/ her own name, recognizing signs 

such as which bathroom to go into, using the 

telephone and just plain getting along with each 

other. 

We are located on a neighborhood commercial street. This means we shop at the grocery 

store, pharmacy, thrift shop and 7-11. There are 

several bus lines near us. There are many Hispanic 

stores on the street which means that our Spanish 

speaking students can learn to shop in stores in their 

own language. We are the only program in the 

City which is able to fully integrate Spanish-speaking 

students into our program. 

Our philosophy has evolved over the years to 

include not only helping our students learn life 

skills, but also helping the students to have a more 

well-rounded life, through offering a richer 

program at the Center. One way in which we do 

this is through our enrichment component which 

includes art, drama and music. 

I want to mention the art just briefly, because 

it is a good example of how we came to broaden 

our philosophy to try to address the needs of the 

whole person. The art program began eight years ago 

when a woman came to volunteer, but didn't know 

what she could do. When we found she was a 

painter we decided to try art. The art work created by 

the students was astounding, it was a revelation. Our 

energies had gone so fully into teaching the basic 

everyday skills needed for living that we had 

234 
neglected internal needs — the need for creative 

expression. The art work is far from child-like. 

While not all the students are great artists, what they 

create is art not "arts and crafts." It is art work that 

most of us could never hope to equal. It is art work 

that says to the community, "We have something to 

offer, do not ignore us; we are your equals." 

Most often when people from the larger 

community see the art work there is a response 

that transcends or shatters the pity and even the 

empathy that so often is expressed toward people with mental retardation and instead affirms 

and says "yes" this is truly art. The students 

now have at least five professional group shows 

a year and the art work sells very well. Everyone participates. While the methods may not be 

traditional, the results are exceptional. Last 

week Walton, who is a very low-functioning 

man, was painting with a brush in each hand 

with the look of total concentration and satisfaction on his face. Without the art program I 

doubt that he would have the opportunity for 

that kind of very personal internal experience. 

Being small also allows us to get to know each 

family and some of their problems. We try to make 

the family a priority. I do a lot of informal 

counseling, listening to the caretakers and the 

problems they face. We often help deal with the city 

bureaucracy. By knowing family circumstances, 

we can often advocate for services that will truly 

be useful to the family. 

The families are also involved in our goal 

setting process. If the Center is to help the students 

to grow and change the family must be involved in 

the process in order to accept the changes as well as 

to help facilitate them. 

We also can do some of the little things that help 

families: going with Johnny down the street once a 

month to get his hair cut; going along on a crucial 

doctor's appointment; helping a single brother 

understand women's clothing sizes for his sister. 

The other aspect of the whole person that we 

try to address is that of a work life and this is done 

through our work program component which we call 

work awareness. 

Our students have been consistently passed over 

for vocational training in favor of higher 

functioning individuals who require less 

supervision. We began to realize that moving into a 

sheltered workshop for some of our students would 

mean loosing much needed reinforcement of their 

survival skills. In addition, their day activities would 

be impoverished by the absence of art, drama and 

music. The work awareness component is the natural 

outgrowth of our philosophy that our students learn 

better in a small setting and that they enjoy a sense 

of community and of being useful. 

Our work awareness component was funded this 

fall by a grant from the federal volunteer agency, 

ACTION, which administers the Foster Grandparents 

Program, RSVP (Retired Seniors Volunteer 

Program), VISTA and Senior Companions. The 

grant is a demonstration grant to help prove that 

adults with severe mental retardation can be good 

volunteers. While ACTION is funding a large part 

of the program for one year, the most important 

thing they offer is technical assistance, to help us 

successfully accomplish our goals and produce a 

manual at the end that will help show other programs 

how to replicate what we have done. 

To be volunteers has given the students the perfect 

opportunity to train in a variety of different skills, 

which we hope will become marketable after this 

initial training period. 

The work awareness students go out from the 

Center as a crew with a teacher to volunteer in 

community organizations that may not be able to 

pay for the work they need done. The biggest 

industry in D.C. is paper shuffling, so the crew most 

often assists with mailings. A teacher goes with the 

crew each time. Before she goes, she evaluates the 

work that needs to be done, and then assigns each 

student to work at a task that is appropriate for their 

present skills or the skills they need to learn. Most 

of the jobs are small, no more than 2,000 pieces. The 

students are developing skills such as folding, 

stuffing envelopes, labeling, collating, sealing, 

packaging and sorting. The fact that the students go 

out of the Center to the agency that actually needs 

the work done, significantly changes the dynamic of 

the training. The students get to spend time at a 

real work setting and they see right away that 

their work is valuable and useful and they are 

exposed to a wide variety of different kinds of 

mailings, as well as other tasks. Last week, for 

example, the students went to a church and a 

senior citizens' center to help with newsletters, 

and to a shelter to help sort clothing for people 

who are homeless. 

Each time we go to a new community 

agency, we find two mentors within the agency who 

are our contacts and arrange for the work to be 

done. The mentors also have a new experience in 

their own work life, meeting and working alongside 

adults with mental retardation. We all know the 

stereotypes people hold, yet here is a group of 

individuals with very severe handicaps coming to 

do the work that an agency badly needs done and 

needs done in a hurry. AND the work crew does it 

well and with enthusiasm and pride. The mentors 

learn what we already know: that people with mental 

retardation can be good productive workers, but 

most of all they learn that they are just 

235 
people — good at some things and not so good at 

others. One mentor commented on how Jean and 

Joan can work the postage meter, but that she has tried 

for years and has never been able to master it. That 

mentor has learned a huge lesson about humanity in 

general and about people with mental retardation 

in particular. 

With the help of ACTION we can now 

expand and refine the project as part of our own 

three year expansion plan which will result in our 

being able to serve 12 additional clients, as well as 

develop a fundraising plan to sustain the work awareness 

program in future years. We are trying to find a 

balance. Right now we are doing the work as 

volunteers, thus, we emphasize agencies who do not 

have funds to pay for the work. We are, however, at 

the same time trying to make forays into the larger 

business world where after a year we could also find 

paid work doing the same kind of thing. 

As part of this project we are documenting the 

training experiences, carefully focusing on such things 

as the kinds and sizes of organizations that need and 

use our service, the variety of tasks the community 

organizations are most likely to need help with, the 

level of supervision necessary, and the degree of job 

satisfaction the students exhibit toward different tasks. 

This information will be written into a small manual 

which will be produced by the end of September. 

We hope this manual will help non-profit 

organizations realize that volunteers who are 

handicapped have something to offer in exchange for the 

opportunity to gain work experience and feel useful. 

CONCLUSION 

In conclusion, I don't mean to imply that all 

programs should be small or even that a small 

program would be right for everyone, but perhaps 

smallness should be an option, a choice. On the other 

hand, the Life Skills Center, through its smallness, is 

able to do a special kind of advocacy, one that helps 

to meet some of the needs that all humans have — the 

need for basic survival skills; the need to feel useful, 

the need for work, enrichment, friendship and a 

sense of belonging to a community. 

236 
Summary of Panel Recommendations 

February 5, 1988 

PANEL RAPPORTEUR 

LIVING ARRANGEMENTS 

EMPLOYMENT 

TRANSPORTATION 

EDUCATION 

RECREATION/LEISURE/SOCIALIZATION 

FAMILY SUPPORTS/RESPITE 

LIFE SERVICES PLANNING 

QUALITY ASSURANCE 

HEALTH CARE 

CITIZEN ADVOCACY 

Hank A. Bersani, Jr., Ph.D. 

William E. Pittman, M.A., M.ED. 

Paul A. Marchand 

Ann P. Turnbull, Ed.D. 

Stuart J. Schleien, Ph.D. 

Rachel D. Warren, M.S. 

Paul L. Medlin 

Valerie J. Bradley 

Albert L. Anderson, D.D.S. 

Curtis L. Decker 

237 
Living Arrangements Panel Recommendations 

by Panel Moderator 

Henry "Hank" A. Bersani, Jr., Ph.D 

Federal/State Level 

 To formulate a clear pro-integration policy at the Federal level. This policy should promote full integration for 

all people regardless of the level of disability. 

 The President's Committee on Mental Retardation (PCMR) should disseminate information about excellence in 

integration by the publication of a book of exemplary integration projects. 

 The PCMR should formulate a new National deinstitutionalization goal as it has in the past. If the value base is in 

place, then it would be a reasonable goal to have an end to Federal participation in institutionalization by the 

year 2000. 

 The PCMR should urge Congress and the Administration for dramatic Medicaid reform. Only full scale 

restructuring of Medicaid can eliminate the current bias towards segregation. 

 The PCMR should work with other national leadership organizations to formulate a National policy in support of 

families. The policy should state that all children need to live with families, can live with families, and that 

families need to be assisted by a national priority of funding of family support systems. 

 Restore HUD cuts that were sustained during the recent Administration, to increase the maximum amount of 

HUD loans and change the rules to allow for live-in assistance. 

 Examine all federal policies relative to promoting integrated options. 

 Move from services to people with disabilities as a privilege to publicly-paid service as a right. 

 Move from policies which seek to control consumer and families, to policies that empower consumers and 

families. 

 Allow and encourage multiple funding streams not linked to label, diagnosis or facility. 

Agency Level 

 For agencies, leasing homes is often preferable to owning. It provides the kind of flexibility that we see as 

being essential to integration. 

 Actively seek and use multiple funding sources. 

 Work with local citizens groups, local housing projects, etc., in our home communities. 

 Use a full range of management options to operate some services, and subcontracting for other services. 

 Seek voluntary collaboration with other groups and agencies in our home communities. Not limiting ourselves 

to just disability groups. 

238 
 Encourage heterogeneous mixing of people with varying disabilities and dissimilar service needs. 

Family Level 

 Recognize families as the primary source of progressive changes. 

 Follow the lead of programs that were started by parents which have often encouraged more integration. 

 Promote ways for families to continue to lead the way to integration. 

 Consumers themselves need to take a greater leading role in determining what services are needed and wanted. 

239 
Employment Panel Recommendations 

by Panel Moderator 

William E. Pittman, M.A., M.Ed. 

 Need to assist community agencies in the identification of barriers that prevent persons with mental retardation 

and other developmental disabilities from achieving their full employment potential. 

 Develop policies and programs at the national, State and local levels which will help to remove those barriers 

in efficient and effective ways. 

 Need to assist persons with mental retardation/ developmental disabilities, and their families, benefit from, 

as well as contribute towards, an improved quality of life. 

 To achieve an improved quality of life, efforts must focus on creative approaches at the community level 

where persons with mental retardation/developmental disabilities live, work and achieve individual successes. 

 PCMR's focus on coordinated services for persons with mental retardation/developmental disabilities should be 

at the community level. 

 Important leadership roles must be given to State agencies, such as: the Governors' Committees on Employment 

of the Handicapped, Developmental Disabilities Planning Councils and Protection and Advocacy Agencies, 

Private Industry Councils and Rehabilitation Services Administrations. 

 PCMR must encourage and support programs which build community capacities which effectively lead to 

independence, productivity and integration for all Americans with mental retardation. 

 A national review of the role (as well as training) of agency "Placement Specialists" is needed, which would 

lead to the possible development of a national credentialling process for acceptable performance and/or 

competencies. 

 There is a need to develop a computerized "state of the art" National Directory of Training and Placement 

Resources (by state) designed for private sector use in accessing our mutual network of services. 

 Demonstration projects based on the Supported Work and JTPA models are needed which develop and enhance 

industry specific community based employment activities. 

 Working with the Administration on Developmental Disabilities "Employment Initiative Campaign", PCMR 

could assist in the establishment of a national public-private sector sponsored toll fee "(1-800) Employment 

Hotline" to respond (as well as follow up) to employer requests for placement agency/service information. 

 PCMR should work with state level networks in the development of "Supported Employment" marketing 

(standardized employer/employee surveys) and public information plans, as well as follow up private sector 

training activities. 

 Further linkage is needed between PCMR and State Governors' Committees on the Employment of the 

Handicapped with respect to activities that encourage mutual support and cooperation (Re: for example, 

discussions on ways PCMR could influence the role of Private Industry Councils with respect to increased 

utilization of DOL's Job Training Partnership Act). 

240 
Transportation Panel Recommendations 

by Panel Moderator 

Paul A. Marchand 

 The PCMR must be at the forefront in establishing a national mandate of full accessibility of transit systems in our 

nation by endorsing and supporting the efforts of the National Council on the Handicapped. 

 The PCMR should plan a more active role in conjunction with the Department of Transportation (DoT) to eliminate 

existing discriminatory DoT policies and assure accessibility to persons with mental retardation within all transit 

systems. 

 The PCMR should advocate that new vehicles approved for mass transit be fully accessible. 

 The PCMR should be working toward policy recommendations that remove the three percent cap in regulations and 

assure that persons with mental impairments are fully covered. 

 The PCMR should support nationwide research efforts about the needs of individuals with mental retardation. 

241 
Education Panel Recommendations 

by Panel Moderator 

Ann P. Turnbull, Ed.D. 

 Placing of students in neighborhood schools using natural proportion criteria, and offer maximum 

opportunities for peer interaction while maintaining the provision of special services. 

 Increase opportunities for students with all levels of mental retardation to participate in regular classroom 

programming with chronological age peers. 

 Replicate some of the benefits of special classes placements from the perspective of students and families who 

have experienced success in that setting into the creation of more integrated options. 

 Heighten research and programmatic attention on supporting students to develop a range of friendships with 

peers with and without a disability. 

 Ensure that early intervention programs are located in the same setting as generic child care services, 

enabling opportunities for integration and access to full day services for working parents. 

 Ensure that administrators respect the values of special education and have a thorough understanding of 

program priorities and alternatives, plus strategies such as required certification. 

 Provide state of the art pre-service and in-service training to teachers, all teachers, in fact all school 

personnel, on integration, because these people are vital to student's success. 

 Establish integration in after school programs that are operated by the educational system. 

 Teach self-advocacy skills from the earliest years of school; starting in pre-school. 

 At the national policy level, the PCMR should become actively involved in the debate and dialogue 

concerning quality education and establish that an essential criteria of a quality school is that it must be able to 

effectively teach all of its students in integrated settings. 

 Conduct longitudinal research on students whose needs are not adequately being addressed by the present service 

system. 

 Provide continued funding for transition training. 

 Identify marathon skills for families and develop options for supporting families to develop these skills 

beginning in early intervention, 

 Investigate the availability of continuing education for adults and expand its availability to provide a full 

continuum of continuing education services throughout adulthood and into the elderly years. 

242 
Recreation/Leisure/Socialization Panel Recommendations 

by Panel Moderator 

Stuart J. Schleien, Ph.D. 

 Greater self-advocacy efforts to encourage an expansion of activities and friends and to move away from 

stereotyped activities that we usually associate with individuals who are mentally retarded. 

 The need for careproviders' support and collaboration with the existing leisure/ recreation service delivery 

system. 

 The need for careproviders and families to advocate for leisure skills programs and leisure education, 

including leisure education in schools. It is never too early to begin teaching children how to make 

choices, play with others and make friends. 

 The need for individualized education and habilitation plans that reflect leisure goals and objectives. 

 The need for therapeutic recreation specialists to work as consultants in schools and communities with teachers and 

recreation professionals to help develop leisure skills programs. 

 The need for clear networks of communication between the public sector, private sector, municipal parks and 

recreation departments, community education agencies and physical educators in the schools. 

 Regarding the states' and federal government's roles, the U.S. Department of Education's, Office of Special 

Education and Rehabilitative Services, needs to continue to support the training of therapeutic recreation 

specialists to work in integrated community environments. 

 The Rehabilitation Services Administration must prioritize integrated recreation programs that serve persons 

with and without disabilities. Federal funds for the development of special recreation programs are available 

once every 3 years. Monies should 

be made available annually to develop exemplary program models that are integrated. 

 On a system-wide basis, leisure/recreation facilities and programs must become programmatically, as well as 

architecturally, accessible (i.e., equal access; zero exclusion policy). 

 The development of more integrated, versus segregated, leisure services in the community. 

 A necessary corollary of an improved quality of life for all citizens includes friends with same-age peers, 

access to community leisure environments, and independent and age-appropriate leisure skills. 

243 
Family Support and Respite Care Panel 

Recommendations 

by Panel Moderator 

Rachel D. Warren 

 PCMR should take a lead role in recommending cohesive Federal policy to support families. 

 Family support should be perceived as entitlements for families of children with disabilities and that unless we 

view family support as an entitlement program, we would never have the stability of that program or those 

services that we need. 

 Suggested approaches to achieving stability are: (1) a child allowance, that could go directly to the families 

and not be directed only to poor families; and (2) is the Chafee bill that would divert funding from 

segregated facilities to supporting families to keep their children in their own homes. 

 Coordination between Federal, state, local, public and private agencies, coordination within States and 

coordination with families would provide funding stability 

 The need for personnel preparation and training to match a major shift in how we work with families. 

 In order to implement family support activities, paraprofessionals and professionals need to be trained in a 

different way around "enabling" role for the families and away from the being "in charge" role of the 

professional. 

 A need for orientation for families in terms of the changing of viability and possibility within family 

support services. 

244 
Life Services Planning Panel 

Recommendations 

by Panel Moderator 

Paul L. Medlin 

 Professionals and the system must change their traditional mindsets by fostering self-sufficiency and 

reducing dependency if citizens with disabilities are to become truly integrated in the society. 

 Professionals must enhance and reinforce the rights of citizens with disabilities and their families to make 

choices without having decisions imposed upon them. 

 Partnerships must be formed to ensure accountability and progressive changes which maximize the lifelong 

benefit to citizens with disabilities. 

 Providers and families and persons with disabilities themselves must work closely together to develop a life 

plan toward economic and self support. 

 Social Security Administration and other agencies need to look into some type of an IRA, for productive 

individuals that are employed to set assets aside for their future needs. 

 Address problems associated with moving from home and institutional settings and the development of 

appropriate community services: (1) the Administration on Developmental Disabilities should advise State 

Developmental Disabilities Councils to address the issue of the State elderly mentally retarded and 

developmentally disabled population, and (2) establish Statewide task groups to address barriers and problems found to be present that impede the community integration of elderly people who are mentally 

retarded or developmentally disabled. 

 Aid in more effectively using non-disabled seniors as volunteers or senior friends: the National Domestic 

Volunteers Service Act should be amended to include expanded provisions for the use of senior companions to 

specifically address the transition problems faced by older persons with mental retardation. 

 Ensure that older persons with mental retardation are not capriciously forced to leave their "homes". The Health 

Care Financing Administration should ensure that its regulations governing Intermediate Care Facilities for the 

Mentally Retarded (ICF/MR) programs permit utmost flexibility to allow for aging and special problems faced 

by residents who "age in place." 

 Ensure that the lack of information/training is not a barrier to the successful integration of older persons with 

mental retardation, into the aging network and that mental retardation providers can realistically adapt their 

programs to serve the aging clientele. 

 The Administration of Developmental Disabilities and the Administration on Aging jointly should 

commission the development of a series of training and education packages on aging and lifelong 

disabilities; and, that these training materials should be broadly available to the Aging and the Mental 

Retardation and Developmental Disabilities Agencies. 

245 
 Need for innovative private sector initiatives, which eliminate barriers for families to pro-actively participate in 

planning a service future for their disabled dependent. 

 Each State needs to look at the merits of the "Self-Sufficiency Trust" model, how it can be implemented and benefit 

persons with disabilities, in each State, to enhance their lifelong service options. 

246 
Quality Assurance Panel 

Recommendations 

by Panel Moderator 

Valerie J. Bradley 

Federal Level 

 More research is needed to document best practices in the area of community integration. 

 Research is necessary to determine the relevance of program standards to positive outcomes for people in the 

community. 

 The Federal government should adopt a coherent national policy on community integration. 

 The Federal government should develop a national policy on disability that eliminates current disincentives to 

community integration. 

 Mechanisms should be developed to assess the accountability of the service system as a whole. 

 Federal support is needed for the dissemination of information on best practices. 

 Federal research funds should be made available to assist states and other program monitors to assess outcomes. 

 Federal support is required to assist in the development of assessment techniques to determine the level of 

satisfaction of persons with disabilities and their families regarding the services they may or may not be 

receiving. 

State Level 

 States should support standard-setting and monitoring options that involve people with disabilities and their 

families. 

 State standards should be reviewed frequently to ensure relevance to emerging values and program trends. 

 Standards should embody and express community integration objectives. 

Public/Private Partnerships 

 The most important partnership is between those in the public sector and families and persons with disabilities. 

 Any partnerships between public monitoring agencies and private accreditation agencies should have the following 

characteristics: (1) they should be directed at a core set of standards; (2) the system should identify critical 

predictors of desired community integration outcomes; (3) there should be explicit expectations from the funding 

source for outcomes purchased; and (4) quality assurance should be a mixture of state and Federal oversight and 

external third party overseers including advocacy and family groups. 

247 
Health Care Panel Recommendation 

by Panel Moderator 

Albert L. Anderson, D.D.S. 

Federal/State Partnership 

 Federal policy and legislation should see to the development of a nationwide network of 

community/university hospital based regional health care centers in every state, based on populations of 

person at risk, and should provide incentives for the states to develop such programs based on local needs 

and health care patterns. 

 Encourage and support effective Federal and State interagency partnerships, and critically evaluate alternatives 

which are developed. 

 Appropriate affordable and accessible health care for all persons with out discrimination and higher rates for 

persons with disabilities. 

 The President's Committee on Mental Retardation should use its influence to: 

1. Foster prevention of mental retardation; 

2. Advocate and demonstrate commitment to assuring that health services are available for mentally retarded 

children; 

3. Maintain and enhance the essential services that are now available to mentally retarded children; 

4. Encourage coalitions, collaboration and cooperation among groups that have interest in children; 

5. Promote the conduct of research on the delivery of health services to mentally retarded children in the 

changing health care system and other clinically relevant aspects of care of these children; 

6. Stimulate opportunities for families of mentally retarded children to help themselves; 

7. Assume leadership in promoting health care professionals who are prepared to provide family based 

health services to mentally retarded children; 

8. Encourage a greater emphasis on follow-up and evaluation of mentally retarded children diagnosed and 

treated in the health care system; 

9. Foster partnerships of local school districts with other community health agencies that provide services 

to mentally retarded children' 

10. Promote the development of alternative strategies and systems for delivery of health services to 

mentally retarded children, similar to the immediate alternative program in Kentucky; 

11. Promote the provision of incentives to both public and private child care facilities that serve mentally 

retarded children and demonstrate that a component of health services is included in the program of the 

facility. 

12. Use PCMR's influence to get group insurers to include as one of their product packages health services for 

the mentally retarded. 

248 
State/Local Partnership 

 The States, through their governmentally based developmental disabilities agencies and health departments, 

would promulgate guidelines for establishment and operation of such regional health care resource centers and 

contract with qualified local community/university hospitals in the private or public sector for such services. 

 Place a high priority on preventing institutionalization, including minimizing a child's stay in general medical 

hospitals such as children’s' hospitals. 

 Financial incentives need to line up with philosophical goals. 

 Actively seek partnerships between State and local communities, which ensure adequate community based 

support structures, including respite care and other in-house services, which will help prevent 

institutionalization. 

 Staff is specifically prepared and trained in client centered services. 

 Provide training and networking, through consortiums, collaborations, and cooperation can work; 

 Provide technical assistance to change dependency to independency. 

 Change the fee for service to better reflect current unit costs. 

 Advocate through alternate systems when your own system is unresponsive. 

Public/Private Partnership 

 Though the core costs of the center should be unwritten by public agencies in State and local government, the 

local hospital program may expand the basic nature of its program to provide for special services unique to its 

setting. It may gain support for these special endeavors through charitable foundations, local industry, private 

agencies (such as Association for Retarded Citizens, United Cerebral Palsy, etc.) as well as through 

traditional third party health insurance companies. 

 Actively seek partnerships between public and private agencies which ensure adequate community based 

support structures including respite care and other in-home services 

Service Delivery System Partnership 

 Families of persons with mental retardation will be among the principal beneficiaries of such a system. A 

regional health care center that coordinates all necessary medical and dental services, and provides high 

quality, responsive care in a cost effective manner is currently lacking from the case management system. It will 

relieve a considerable degree of anxiety on the part of parents as to who will take responsibility for their 

family members with mental retardation when they are no longer able to care for them, and will help them 

negotiate the difficult and complex health care system looking for the doctor, dentist, or hospital that can 

address the health care needs of a patient with mental retardation in a competent and dignified manner. 

 Ensure flexibility and responsiveness in the service system: 

1. Work together to determine how to effectively utilize all the valuable resources that exist. 

2. Assure access to any part of the service delivery system which will best meet the needs of the child and 

family involved. 

3. Acknowledge that our knowledge and technical sophistication is not yet great enough to assure survival 

for some children except in institutional or hospital-like environments. 

 Assure family involvement in all planning activities, including systems planning and especially in regard to their 

own family members: 

1. Acknowledge and understand family concerns. 

2. Plan for the Life Span. 

3. Ensure adequate monitoring and evaluation. 

249 
Citizen Advocacy Panel Recommendations 

by Panel Moderator 

Curtis Decker 

Federal Level 

 The PCMR must examine its own understanding of the role of persons with disabilities including reviewing 

language in its publications and how its members and staff publicly deal with this population. 

 The PCMR needs to place a stronger emphasis on self advocacy and citizen advocacy as viable alternatives 

to helping persons with disabilities protect their rights. 

 A person with a disability should be a member of the PCMR. 

 The PCMR needs to regain its leadership role in the field of mental retardation and take on the role of a 

visionary in the development of services to people with disabilities. 

State Level 

 Each State should develop self advocacy and citizen advocacy programs using existing Federal funding 

sources such as; the Developmental Disabilities Councils. 

 Assure that the various forms of advocacy are conflict-free, organized and delivered by the most 

appropriate body. 

Recognize the expertise of persons with developmental disabilities to do as much for themselves as 

possible. 

Commitment to client-directed advocacy. 

 Encouragement of professionals and parents to "let go" of the control of the decision- making process regarding 

major life plans of persons with disabilities. 

250 
Appendices 

A - Presidential Forum Program Agenda Including Co-Sponsors 

B - Exhibitors 

C - Participants and Attendees 

D - PCMR Members and Staff 

E - Contributing Authors 

251 
APPENDIX A 

PROGRAM AGENDA 

A Presidential Forum: 

Citizens with Mental Retardation and Community Integration 

February 3-5, 1988 

Mayflower Hotel 

1127 Connecticut Avenue, N.W., 

Washington, D.C. 20036 

STATEMENT OF PURPOSE 

The purpose of this Presidential Forum is to examine the national effort to promote maximum community 

integration of citizens with mental retardation. 

The Forum will highlight the experiences of community planners, service providers, educators, Federal/State 

officials, parents and self-advocates that have achieved success in planning, designing, evaluating and/or implementing 

exemplary community integration models serving citizens with mental retardation, including personal experience 

profiles. 

"Themes" to be addressed by the participants are: Federal/State Partnership 

State/Local Partnership 

Public/Private Partnership 

Family/Service Delivery System Partnership 

Potential Presidential Forum products include: 

Recommendations to the Secretary of Health and Human Services and a Report to the President regarding the 

role of the Federal government in the promotion of maximum community integration of citizens with 

mental retardation; 

a Presidential Forum proceedings document; 

a video tape summary of the Forum proceedings; and, 

a technical assistance manual to be used by State and Local governments and public and private agencies in 

the design, delivery and evaluation of exemplary program models that promote maximum community 

integration of citizens with mental retardation. 

The President's Committee on Mental Retardation acknowledges and extends appreciation to the following 

organizations, agencies and private individuals for their financial co-sponsorship of the national conference, "A 

Presidential Forum: Citizens with Mental Retardation and Community Integration": 

ACTION 

American Association of University Affiliated Programs for Persons with Developmental Disabilities 

American Foundation on Mental Deficiency 

American Nurses' Association, Inc. Carter, Hawley, Hale Stores, Inc. 

DoE-Office of Special Education and Rehabilitative Services DHHS-Administration for 

Children, Youth and Families DHHS-Administration on Developmental Disabilities 

DHHS-Health Resources and Services Administration Bureau of Maternal and Child Health and Resources 

Development 

DHHS-National Institute of Child Health and Human Development DHHS-Social Security 

Administration 

Fairview Families and Friends, Inc. Goodwill Industries of America, 

Inc. 

252 
Miriam and Peter His Fund 

Maine Department of Mental Health and Mental Retardation 

Marshall's Department Stores 

Minnesota University Affiliated Program/Center for Residential and Community Services 

National Association for the Dually Diagnosed 

National Council on the Handicapped 

National Foundation for the Handicapped 

WEMCO, Inc. 

Mrs. Jefferson Patterson of Washington, D.C. 

253 
254 

Tuesday, February 2, 1988 EAST ROOM 

5:30-7:00 P.M. Pre-Forum Reception 

(Cash Bar) 

and Exhibits Forum 

Registration 

Wednesday, February 3, 1988

8:00-8:45 A.M. Forum Registration and 

Opening Plenary Session 

EAST ROOM 

9:00 A.M. Welcome and Introduction 

of Speakers 

Albert L. Anderson, D.D.S. 

Vice Chairman 

President's Committee on 

Mental Retardation 

San Diego, California 

9:15 A.M. Greetings and Introduction 

of the Secretary of DHHS 

Sydney Olson 

Deputy Assistant Secretary 

for Human Development 

Services 

Washington, D.C. 

9:30 A.M. Opening Statements Otis R. Bowen, M.D. 

Secretary, Department of 

Health and Human Services 

and Chairman, PCMR Washington, 

D.C. 

9:45 A.M. Statement of Occasion 

"Overview of PCMR's Community 

Integration 

Initiative" 

Vivian Bricklin Levin Executive 

Director 

President's Committee on 

Mental Retardation Washington, 

D.C. 

10:00 A.M. Drug Abuse, Mental 

Retardation and Community 

Integration 

Donald Ian Macdonald, M.D. 

Special Assistant to 

President Reagan and 

Director, Drug Abuse 

Policy Office 

10:30 A.M. Refreshment Break 

11:00 A.M. Public Awareness/ 

Public Acceptance 

Emily Pert Kingsley 

Writer, Sesame Street (PBS) 

Chappagua, New York 

11:30 A.M. Parental/Family Role 

in Community Integration Planning - 

Now and the 

Future 

James H. DeOre, Exec. Dir. National 

Foundation for 

the Handicapped Elmhurst, 

Illinois 

12:00 Noon Forum Luncheon GRAND BALLROOM 

1:30 P.M. Zoning, Real Estate and Related 

Issues 

Arlene S. Kanter 

Professor, Syracuse 

University School of Law Consultant 

and Former 

Staff Attorney at the 

Mental Health Law Project Washington, 

D.C. 

2:15 P.M. Financing of Community 

Integration Models 

Vincent D. Pettinelli, ACSW, FAAMR 

President, VOCA 

Corporation 

Columbus, Ohio 
2:45 P.M. Labor and Staffing Peter "Skip" Sajevic 

Vice Pres. for Policy 

Natl Association of Private 

Residential Resources 

St. Paul, Minnesota 

3:15 P.M. Management of Transition 

into the Community 

Kingsley R. Ross 

Director, Developmental 

Services Program Office 

Health and Rehabilitative 

Services for the State 

of Florida 

Tallahassee, Florida 

3:45 P.M. Closing Comments and 

Adjournment 

Albert L. Anderson, D.D.S. 

Vice Chairman 

President's Committee on 

Mental Retardation 

5:30-7:00 P.M. Forum Reception 

Sponsored by: 

The National Foundation for 

the Handicapped 

Exhibits 

STATE ROOM 

Thursday, February 4, 1988

CONCURRENT PANEL SESSIONS 

PANEL 1 LIVING ARRANGEMENTS 9:00 A.M.-Noon PENNSYLVANIA ROOM 

Topic of Discussion 

Moderator: Hank A. Bersani, Jr., Ph.D. Assistant 

Professor on 

Special Education Syracuse University 

Syracuse, New York 

Community Integration Project 

Panelists: Janice C. Schiff

Director, Residential 

Development of the 

Fairfax/Falls Church, 

Virginia Community Services Board 

Vienna, Virginia 

Partnership for Residential 

Development 

Michael M. Morris 

Associate Executive 

Director 

Community Services 

Division 

United Cerebral Palsy 

Association, Inc. 

Washington, D.C. 

Implications of Federal/State policy

Gail D. Jacob

Program Director 

Options in Community 

Living, Inc. 

Madison, Wisconsin 

Options in Community Living 

 

255 
Jean W. Powers 

Administrator 

Peppermint Ridge 

Corona, California 

Residential programs for persons 

with developmental needs 

Thursday, February 4, 1988

CONCURRENT PANEL SESSIONS 

PANEL 2 EMPLOYMENT 9:00 A.M.-Noon RHODE ISLAND ROOM 

Topic of Discussion 

Moderator: Robert E. Stovenour 

Deputy Commissioner 

Administration on 

Developmental Disabilities 

Washington, D.C. 

Overview of the ADD

Employment Initiative 

Panelists: William Pittman 

Administration on 

Developmental Disabilities 

Washington, D.C. 

ADD Employment Initiative 

Donna D. Doerer 

Fmr Regional Director, 

ARC/US 

National Employment and 

Training Program 

Seattle, Washington 

Public/Private Partnership 

working together to provide 

employment

Kenneth J. Shaw 

Director, Rehabilitation 

and Research 

Goodwill Industries of 

America, Inc. 

Bethesda, Maryland 

Supported employment within 

the competitive workplace 

Aaron J. Prero, Ph.D. 

DHHS-Social Security 

Administration 

Baltimore, Maryland 

Transitional employment 

Paul Hippolitus 

Acting Director, Office of 

Plans, Projects & 

Services 

President's Committee on 

Employment of the 

Handicapped 

Washington, D.C. 

Joint Training Partnership Act 

 

 
256

Thursday February 4, 1988 

CONCURRENT PANEL SESSIONS 

PANEL 3 TRANSPORTATION 9:00 A.M.-Noon SOUTH CAROLINA ROOM

Topic of Discussion 

Moderator: Paul A. Marchand 

Director Office for 

Governmental Affairs, 

Association for Retarded 

Citizens/U.S. 

Washington, D.C.

Panelists: Robert C. Ashby Deputy 

Asst. General 

Council Regulations & 

Enforcement 

Department of Transportation 

Washington, D.C.

DoT legislation/regulations and 

their resultant affect on mentally 

retarded citizens 

Lex Frieden 

Executive Director National 

Council on the 

Handicapped Washington, D.C.

Transportation for the mentally 

and physically handicapped 

Bruce M. Oka 

Equal Employment 

Opportunity Specialist 

Department of Health and 

Human Services 

Office for Civil Rights 

San Francisco, California

San Francisco Municipal Railway 

(MUNI) serving the handicapped 

Transportation considerations for 

mentally retarded 

citizens 

Thursday, February 4, 1988 

CONCURRENT PANEL SESSIONS 

PANEL 4 EDUCATION 9:00 A.M.-Noon VIRGINIA ROOM

Topic of Discussion:

Moderator: Ann P. Turnbull, Ed.D. 

Public Policy Fellow in 

Mental Retardation 

Joseph P. Kennedy, Jr. 

Found. 

Washington, D.C.

Future planning in education 

Panelists: Mary A. Falvey, Ph.D. 

Professor 

Division of Special 

Education 

California State University, 

L.A.

Special education

 

257 
William E. Kiernan, Ph.D. 

Director of Training and 

Research 

Institute for Adults with 

Disabilities 

Children's Hospital Center 

Boston, Massachusetts

Master's Program for training 

specialists in special 

education and rehabilitation 

Muriel W. O'Tuel, Ph.D. 

Assistant to the 

Superintendent 

Horry County School 

District 

Conway, South Carolina

Integration of mentally retarded 

children into public schools

William R Langner 

Education Program 

Specialist 

U.S. Dept. of Education 

Office of Vocational and 

Adult Education 

Washington, D.C. 

Adult Education programs 

Howard P. Blackman, Ed.D. 

Executive Director 

LaGrange Area Department 

of Special Education 

LaGrange, Illinois; Member 

PCMR 

Working with students without 

disabilities to foster 

accepting school climates for 

mentally retarded students 

Thursday, February 4, 1988

CONCURRENT PANEL SESSIONS

 RECREATION/ 

PANEL 5 LEISURE/SOCIALIZATION

9:00-Noon NEW JERSEY ROOM

Topic of Discussion:

Moderator: Stuart J. Schleien, Ph.D. 

Associate Professor 

School of Physical 

Education and 

Recreation 

Univ. of Minnesota-Twin Cities 

Minneapolis, Minnesota

Community recreation for 

persons with disabilities 

Panelists: John Chromy 

Director, Special Olympics 

Joseph P. Kennedy, Jr. 

Found. 

Washington, D.C.

Future Goals of the 

Special Olympics 

Dr. Sirkku "Sky" Hiltunen 

The Art & Drama Therapy 

Institute, Inc. 

Washington, D.C.

Providing art and drama 

therapy services to mentally 

retarded and developmentally 

disabled persons

258 
 K. J. Moore Chairman, 

Scouting for the 

Handicapped 

National Capital Area Council 

Washington, D.C.

Scouting programs for mentally 

retarded children and adults

Thursday, February 4, 1988

CONCURRENT PANEL SESSIONS

 FAMILY SUPPORTS/ 

PANEL 6 RESPITE CARE

1:30-4:30 P.M. PENNSYLVANIA ROOM

Topic of Discussion

Moderator: Rachel D. Warren 

Director 

National Resource Center 

on Family Based Services 

University of Iowa 

School of Social Work 

Iowa City, Iowa

"Respitality" and respite care 

procedures in the context of 

family based services 

Panelists: Susan Brooks Parker 

Commissioner, Main Dept. 

of Mental Health and 

Mental Retardation 

Augusta, Maine

Family support as a focal program 

area of State policy to actively 

promote community integration 

Shirley Cohen, Ph.D. 

Associate Dean 

Hunter College of The City 

University of New York 

Division of Programs 

in Education 

New York, New York 

Respite care from an 

International perspective 

Allan I. Bergman 

Deputy Director for 

Governmental Activities 

United Cerebral 

Palsy Association, Inc. 

Washington, D.C. 

National policy and program 

perspectives on family support

 

 

 

259 
Thursday, February 4, 1988 

CONCURRENT PANEL SESSIONS 

PANEL 7 LIFE SERVICES PLANNING 1:30-4:30 P.M. RHODE ISLAND ROOM

Topic of Discussion

Moderator: Paul L Medlin 

Senior Vice President 

Corporate Development Charter

Management 

Group, Ltd. 

Oak Brook, Illinois

State financial planning and the 

family's role 

Panelists: Ron Barber 

Department of Economic 

Security 

Division of Developmental 

Disabilities 

Phoenix, Arizona

Planning for economic security 

Matthew P. Janicki, Ph.D. 

Director of Aging Services 

Office of Mental 

Retardation and Develop. 

Disabilities 

Albany, New York

Transition from worklife to 

retirement 

Kenneth McGill 

Acting Director, 

External Affairs 

Office of Governmental 

Affairs 

DHHS-Social Security Admin. 

Baltimore, Maryland

Supplemental Security Income 

(SSI)/Medicaid eligibility 

 

Thursday, February 4, 1988

CONCURRENT PANEL SESSIONS

PANEL 8 QUALITY ASSURANCE 1:30-4:30 P.M. SOUTH CAROLINA ROOM 

Topic of Discussion 

Moderator: Valerie J. Bradley 

President, Human 

Services Research 

Institute 

Boston, Massachusetts 

State support for individuals/ 

families by assessing and 

enhancing residential services 

Panelists: Linda Toms Barker 

Berkeley Planning 

Associates 

Berkeley, California 

Process and staffing 

Ronald Conley, Ph.D. Quality assurance from a 

 

260 
Special Assistant 

Administration on 

Developmental Disabilities 

Washington, D.C.

system perspective 

Mary C. Cerreto, Ph.D. 

Director of Psychology 

Franciscan Children's 

Hospital and 

Rehabilitation Center Brighton, 

Massachusetts

Accreditation standards 

C. Kaye Pearce 

Associate Director, Programs 

Commission on 

Accreditation of 

Rehabilitation Facilities 

(CARE) 

Tucson, Arizona

Accreditation standards for 

industries who offer competitive 

employment for citizens with 

mental retardation within 

community programs 

Thursday, February 4, 1988

CONCURRENT PANEL SESSIONS

PANEL 9 HEALTH CARE 1:30-4:30 P.M. VIRGINIA ROOM

Topic of Discussion

Moderator: Albert L. Anderson, D.D.S. 

Vice Chairman, PCMR 

San Diego, California 

Dental and general health care of 

mentally retarded citizens 

Panelists: Philip R. Ziring, M.D. 

Chairman, Department 

of Pediatrics, 

Pacific Presbyterian 

Medical Center 

San Francisco, California

Medical care for patients of all 

ages and levels of mental 

retardation 

Mary Richardson, Ph.D. 

Administrator 

Clinical Training Unit 

Child Development and 

Mental Retardation Center 

National Resource Institute 

on Children & Youth 

with Handicaps 

Seattle, Washington

Services to medically fragile children 

Gregory P. Weigle 

President 

Alliance of Genetics 

Support Groups 

Vienna, Virginia

261 

Access to health care 
Juanita W. Fleming, Ph.D. 

Professor and Associate 

Vice-Chancellor 

Academic Affairs, 

Medical Ctr 

University of Kentucky 

Lexington, Kentucky

Health services to children with 

mental retardation in the community, 

schools and home 

George H. Daniels 

Director of Staff 

Development & Training 

at Sunmount DSSO 

Tupper Lake, New York

Health care provided by nurses 

serving mentally retarded and 

developmentally disabled 

individuals

Thursday, February 4, 1988

CONCURRENT PANEL SESSIONS

PANEL 10 CITIZEN ADVOCACY 1:30-4:30 P.M. NEW JERSEY ROOM

Topic of Discussion

Moderator: Curtis Decker 

Executive Director 

National Association of 

Protection & 

Advocacy 

Systems 

Washington, D.C.

Protection & advocacy 

systems

Panelists: Bernard Carabello 

Director, Self-Advocacy 

Association of New York 

New York, New York

Self-advocacy 

Glenda Davis 

Executive Director Citizen 

Advocacy, Inc. Grand Island, 

Nebraska

Organization and funding of 

advocacy groups

Colleen A. Wieck, Ph.D. 

Executive Director 

Minnesota Governor's 

Planning Council on 

Developmental Disabilities St. 

Paul, Minnesota

Advocacy and community 

integration from a DD 

Council perspective 

Teresa Smith 

Michigan NW Area — ARC 

Garden City, Michigan 

Margaret A. Hoven, 

M.A. Executive 

Director 

Life Skills Center 

Washington, D.C.

"People for Independence" 

a self-advocacy group 

and her own personal 

experiences and growth 

in the community 

Severely retarded adults 

serving as volunteers to 

gain work experiences in 

the community 

262 
Friday, February 5, 1988 CHINESE ROOM

PANEL REPORTS RAPPORTEUR 

9:10 A.M. Living Arrangements Hank A. Bersani, Jr., Ph.D.

9:30 A.M. Employment Robert E. Stovenour

9:50 A.M. Transportation Paul A. Marchand

10:10 A.M. Education Ann P. Turnbull, Ed.D.

10:30 A.M. Recreation/Leisure/Social Stuart J. Schleien, Ph.D.

10:50 A.M. Family Supports/Respite Rachel D. Warren, M.S.

11:10 A.M. Life Services Planning Paul L. Medlin

11:30 A.M. Quality Assurance Valerie J. Bradley

11:50 A.M. Health Care Albert L. Anderson, D.D.S.

12:10 Noon Citizen Advocacy Curtis Decker

12:30 P.M. Forum Wrap-up Vivian Bricklin Levin 

Executive Director, PCMR

12:45 P.M. Closing Remarks and 

Forum Adjournment 

Albert L. Anderson, D.D.S 

Vice Chairman, PCMR

9:00 A.M. Opening Remarks and 

Introduction of Panel 

Rapporteurs 

Albert L. Anderson, D.D.S. 

Vice Chairman, PCMR 

 

263 
APPENDIX B

264 
A Presidential Forum: 

Citizens with Mental Retardation and Community Integration 

Pre-Forum 

Reception and Exhibits 

Tuesday, February 2, 1988 

5:30 P.M. - 7:30 P.M. 

FEATURING 

Community Integration Exhibits 

Mayflower Hotel 

1127 Connecticut Avenue, N.W., Washington, D.C. 20036 

EXHIBITORS 

American Association of University Elaine M. Eklund

Affiliated Programs for Persons 

with Developmental Disabilities 

Ann S. Rudigier 

"Developmental Disabilities 

Awareness Month"

Laura Eblin 

Judy Moore

Administration on Children Youth and 

Families

Jane DeWeerd 

National Maternal and Child Health 

Clearing-House

Letha Dugas

The National Center for Education in 

Maternal and Child Health

Jennifer Duncan 

National Association for the Dually Diagnosed Andrew Levitus, M.D.

National Council on the Handicapped Andria Farbman

National Foundation for the Handicapped James DeOre

"Self Sufficiency Thrust" Dwaine Thompson

Pacific Western Information Systems Bruce Williams

Social Security Administration Martha Seabrooks 

Sheila Jones

Integrated Living Arrangements Hank A. Bersani, Jr., Ph.D.

Health Care Mobilizing for Prevention John P. Scagnelli

Protection and Advocacy 

A New Way of Thinking

Colleen Wieck, Ph.D. 

President's Committee on Mental Retardation Ashot P. Mnatzakanian

Presidential Forum: Citizens With Mental Retardation 

and Community Integration

Ashot P. Mnatzakanian 

265 
APPENDIX C 

A Presidential Forum: 

Citizens with Mental Retardation and Community Integration 

266 
Participants and Attendees 

ALABAMA 

1. David Prince 

President 

Association for Retarded Citizens of Alabama 

1717 - 3rd Avenue Tuscaloosa, 

Alabama 35401 

(205) 348-4928 

2. Lenora Gattis 

Sr. Vice President 

Association for Retarded Citizens of 

Alabama 

1717 - 3rd Avenue 

Tuscaloosa, Alabama 35401 

(205) 883-7881 

3. Shirley M. Steele 

Nursing Division Director 

Sparks Center for Developmental Disorders 

1720 7th Avenue South 

Birmingham, Alabama 35213 

(205) 934-1065 

4. Portis Cunningham 

6727 Greenbrook Drive 

Montogomery, Alabama 36117 

5. Barbara Brunson 

781 - 6th Avenue South 

Birmingham, Alabama 35206 

6. Anne Ramsey 

Director 

Program for Exceptional Children 

and Youth 

1020 Monticello Drive 

Montgomery, Alabama 36116 

(205) 261-5099 

7. Wanda L. Wigby 

317 Fairway Drive Anniston, 

Alabama 36201 

(205) 236-5763 

8. Reuben W. Cook 

Alabama Developmental Disabilities 

Program 

Tuscaloosa, Alabama 35487-2847 

ALASKA 

ARIZONA 

1. Ron Barber 

Department of Economic Security (DES) 

Division of Developmental Disabilities 

1400 West Washington Street 

Phoenix, Arizona 85005 

(602) 255-5775 

2. C. Kaye Pearce 

Associate Director, Program 

Commission on Accreditation of 

Rehabilitation Facilities (CARF) 

2500 N. Pantano Road, Suite 226 Tucson, 

Arizona 85715 

(602) 886-8575 

ARKANSAS 

1. Ann Majure 

Deputy Director 

Developmental Disabilities Services 

7th & Main Streets 

5th Floor, Donaghey Plaza No. 

P. O. Box 1437 

Little Rock, Arkansas 72201 

(501) 682-8662 

2. Cindy J. Hartsfield 

Executive Director Governor's Developmental Disabilities 

Planning Council (DDPC) 

4815 West Markham 

Little Rock, Arkansas 72201 

(501) 661-2399 

3. Jane Browning 

President 

Arkansas ARC 

Union Station Square/Suite 406 

Little Rock, Arkansas 72201 

(501) 375-4464 

4. Mark Stodola 

City Attorney, Little Rock, AR 

Chairman, Monitoring & Evaluation 

Committee 

4815 West Markham 

Little Rock, Arkansas 72205-3867 

(501) 661-2589 

5. Marie Pierce 

Director of Community Integration 

Advocacy Services, Inc. 

Suite 311 

Medical Arts Building 

12th & Marshall 

Little Rock, Arkansas 72202 

(501) 371-2171 

CALIFORNIA 

1. Mary A. Falvey, Ph.D. 

Associate Professor 

Division of Special Education 

California State University, Los Angeles 

5151 State University Drive 

Los Angeles, California 90032 

0-(213) 224-3711 

0-(213) 224-3698 

2. Albert L. Anderson, D.D.S. 

Vice Chairman/PCMR 

420 Spruce Street 

San Diego, California 92103 

(619) 291-5290 

3. Philip R. Ziring, M.D. 

Chairman 

Department of Pediatrics 

Pacific Presbyterian Medical Center 

2351 Clay Street, Suite 501 

San Francisco, California 94115 

(415) 923-3477/3928 

4. Ruth Warson, R.N., M.A. 

11428 Dona Regita 

Studio City, California 91604

267 
5. Marilyn S. Brody 

Planning and BudgetAssociate 

6505 Wilshire Boulevard, Suite #907 

Los Angeles, California 90048 

(213) 852-1234 X2930 

6. Russell Pow 

1778 Albert Avenue 

San Jose, California 95124 

7. Gwin Spertell 

President 

Pacific Western Information Systems 

1245S.Winchester Boulevard 

San Jose, California 95128 

(408) 246-4767 

8. Bruce Williams 

Director of Marketing 

Pacific Western Information Systems 

1245 S. Winchester Boulevard 

San Jose, California 95128 

(408) 246-4767 

9. Joyce M. Turner 

Administrator 

Children's Convalescent Hospital 

8022 Birmingham Drive 

San Diego, California 92123 

(619) 576-5833 

10. Randi Francis 

Department of Health and Human Services, 

Office of the Secretary Office of Civil Rights 

50 United Nations Plaza, Room 322 

San Francisco, California 94102 

11. Bruce Oka 

Equal Employment Opportunity Specialist 

Department of Health and Human Services, 

Office of the Secretary Office of Civil Rights 

50 United Nations Plaza, Room 322 

San Francisco, California 94102 

12. Ellen Hunt 

1205 Del Oro Avenue 

Santa Barbara, California 93109 

13. Florene Poyadue 

Parents Helping Parents 

535 Race Street, Suite 220 

San Jose, California 95126 

14. Georgette Strohm 

Parents Helping Parents 

535 Race Street, Suite 220 

San Jose, California 95126 

(408) 288-5010 

15. Martin S. Appel 

9601 Wilshire Boulevard Penthouse 

Beverly Hills, California 90210 

(213) 274-4844 

16.J. Alfred Rider, M.D., Ph.D. 

Parnassus Heights Medical Building 

350 Parnassus Avenue, Suite 900 

San Francisco, California 94117 

17. Matthew J. Guglielmo 

1122 Oxford Road 

San Marino, California 73118 

(213) 681-4066 

 18. Jean W. Powers 

Peppermint Ridge 

825 Magnolia Avenue 

Corona, California 91719 

(714) 737-0910 

19. Linda Toms Barker 

University of California, Berkeley 

3200 Adline Street 

Berkeley, California 94703 

 20. John E. Weiks 

P.0. Box 28127 

San Diego, California 92128 

(619) 485-8878 

21. Beverly Weiks 

 P.0. Box 28127 

 San Diego, California 92128 

(619) 485-8878 

 22. Eileen DeVere Furniss 

2351 Juan Street 

San Diego, California 92103 

(619) 298-4264 

Office: (619) 280-8132 

 23. Dr. W. C. Donovan 

Chief Executive Officer 

Tierra del Sol Foundation 

9919 Sunland Boulevard 

Sunland, California 91040 

(818) 352-1419 

 24. Mrs. Marsha BernHard 

111 Schroder Drive Oroville, 

California 95966 

(916) 589-1250 

 25. John Petrick 

Peppermint Ridge 

825 Magnolia Avenue 

Corona, California 91719 

(714) 737-0910 

COLORADO 

1. Donald W. Schiff, M.D. 

Vice President 

American Academy of Pediatrics 

600 Front Range Road 

Littleton, Colorado 80120 

(303) 270-6616 

2. Linda Rainee Courtnage 

3620 E. Easter Avenue 

Littleton, Colorado 80122 

3. Beth Schaffner 

PEAK Parent Center 

6055 Leham Drive, Suite 101 

Colorado Springs, Colorado 80918 

CONNECTICUT 

1. Susan O'Milian 

Regulations Executive Adviser Office of 

Planning and Management State of Connecticut 

80 Washington Street 

Hartford, Connecticut 06106 

(203) 566-4478 

268 
2. Barbara J. Roskos 

DMR Region 3 

Assistant Regional Director 

375 Hartford Turnpike 

Vernon, Connecticut 06066 

(203) 871-6565 

3. Brian R. Lensink 

Commissioner 

Department of Mental Retardation 

90 Pitkin Street 

East Hartford, Connecticut 06108 

(203) 725-3860 

4. James F. Webber 

His Dwelling Place, Inc. 

290 Westfield Street 

Middletown, Connecticut 06457 

(203) 347-6790 

5. Yvonne B. Webber 

His Dwelling Place, Inc. 

290 Westfield Street 

Middletown, Connecticut 06457 

(203) 347-6790 

6. Mercia Segovia 

P. O. Box 51 

Mansfield Training School 

Mansfield Depot, Connecticut 06251 

(203) 429-6451 x544/582 

DELAWARE 

1. Frederick W. Kurz, Ph.D. 

CMRP Director, NCC 

Community Services 

P. O. Box 574 

New Castle, Delaware 19720 

(302) 421-6293 

2. Joanna E. McCabe 

Box 1000 

Georgetown, Delaware 19975 

(302) 934-8031 

DISTRICT OF COLUMBIA 

1. Arlene S. Kanter 

Staff Attorney 

Mental Health Law Project 

2021 "L" Street, N.W., Suite 800 

Washington, D.C. 20036 

(202) 467-5730 

2. Michael M. Morris 

Associate Executive Director 

Community Services Division 

Governmental Activities Office 

United Cerebral Palsy Association (UCPA) 

1522"K"Street, N.W., Suite 1112 

Washington, D.C. 20005 

(202) 842-1266 

 3. Paul A. Marchand 

Director 

Office of Governmental Affairs 

Association for Retarded Citizens, U.S. 

Suite 516 

1522 "K" Street, N.W. 

Washington, D.C. 20005 

(202) 785-3388 

 4. Robert C. Ashby 

 Deputy Assistant General Council 

for Regulations and Enforcement 

 U.S. Department of Transportation 

400 7th Street, S.W., Room 10424 

Washington, D.C. 20590 

(202) 267-3846 

5. John Chromy 

Director of U.S. Chapters Program 

Special Olympics 

1350 New York Avenue, N.W. 

Suite 500 

Washington, D.C. 20005 

(202) 393-1250 

6. Dr."Sky" Hiltunen 

Art and Drama Therapy Institute, Inc. 

Room 215 

6045 - 16th Street, N.W. 

Washington, D.C., 20011 

(202) 576-6553 

7. Margaret Hoven 

Executive Director 

Life Skills Center 

3166 Mt. Pleasant Street, N.W. 

Washington, D.C. 20310 

(202) 234-9351 

8. Ronald Conley, Ph.D. 

Special Assistant 

Administration on Developmental 

Disabilities 

Office of Human Development Services 

Room 347-D2, Hubert H. Humphrey Building 

200 Independence Avenue, S.W. 

Washington, D.C. 20201 

(202) 245-1961 

9. Curtis Decker 

Executive Director 

National Association of Protection 

and Advocacy Systems 

300 "I" Street, N.E., Suite 212 

Washington, D.C. 20002 

(202) 546-8202 

10. William E. Pittman 

Developmental Disabilities Program Specialist 

Administration on Developmental Disabilities 

Office of Human Development Services 

Hubert H. Humphrey Building 

200 Independence Avenue, S.W. Washington, 

D.C. 20201 

(202) 245-2888 

11. Irene Bowen, Supervisor 

Coordination and Review 

Civil Rights Division 

Room 838 - HOLC Building 320 – 

1st Street, N.W. 

Washington, D.C. 20530 

(202) 724-2245 

12. Charlotte Conaway 

Office of Vocational and Adult Education 

U.S. Department of Education 

269 
Reporter's Building - Room 615 

400 Maryland Avenue, S.W. 

Washington, D.C. 20202 

(202) 732-2436 

13.Judith C. Gilliom 

Deputy Director for Equal Opportunity Policy 

(Handicapped Individuals Program) 

Department of Defense 

ODASD (CPP), OASD (FM&P) 

Room 3A272, The Pentagon 

Washington, D.C. 20301-4000 

(202) 697-8661 

14.Robert C. Baumiller 

Georgetown University Medical Center 

Department of Obstetrics and Gynecology 

Division of Genetics 

3800 Reservoir Road, N.W. Washington, D.C. 20007-2197 

15. Martha Ford 

Assistant Director 

Association for Retarded Citizens, U.S. 

Suite 516 

1522 "K" Street, N.W. 

Washington, D.C. 20005 

(202) 785-3388 

16.Jean McGuire 

Assistant Director 

Association for Retarded Citizens, U.S. 

Suite 516 

1522 "K" Street, N.W. 

Washington, D.C. 20005 

(202) 785-3388 

17. Bill Mitchell 

Housing Project Coordinator 

Association for Retarded Citizens, U.S. 

Suite 516 

1522 "K" Street, N.W. 

Washington, D.C. 20005 

(202) 785-3388 

18. Ann P. Turnbull, Ed.D. 

Public Policy Fellow in Mental Retardation 

Joseph P. Kennedy, Jr. Foundation 

1350 New York Avenue, N.W.

Washington, D.C. 20005 

(202) 393-1250 

19. Shirley A. Rees 

Community Liaison 

MRDDA 

429 "0" Street, N.W. 

Washington, D.C. 20001 

(202) 673-7560 

20. Michael Edukat 

Deputy Chief, BCS 

429 "0" Street, N.W. 

Washington, D.C. 20001 

(202) 673-7560 

21. Karen Wallace 

Chief Residential Services Branch 

MRDDA 

429 "0" Street, N.W. 

Washington, D.C. 20001 

(202) 673-7560 

22. Col. William P. McCahill, 

USMCR Past Chair, People to People Committee 

1111- 20th Street, N.W., Suite 660 

Washington, D.C. 20036 

(703) 525-4047 

23. Fred J. Krause 

National Association of the Partners of the 

Americas, Inc. 

1424 K Street, N.W., Suite 700 

Washington, D.C. 20005 

(202) 628-3300 

24. Mary Smith 

Congressional Research Service 

CRS/EPW—LM 320 

The library of Congress 

Washington, D.C. 20540 

25. Claude W. Whitehead 

Mary E. Switzer Research Fellow 

46A G Street, S.W. 

Washington, D.C. 20024 

(202) 488-8591 

26. Margaret Dickinson, Ph.D. 

MRDDA 

429 "0" Street, N.W. 

Washington, D.C. 20001 

(202) 673-7560 

27. Sarah B. Glindmeyer, R.N., M.P.H. 

Senior Nurst Consultant 

1331 "H" Street, N.W. 

Washington, D.C. 20005 

(202) 727-0735 

28.Julie Clay 

National Council on the Handicapped 

Suite 814 

800 Independence Avenue, S.W. 

Washington, D.C. 20591 

(202) 267-3846 

29.Betty R. Ransom 

National Council on the Aging 

600 Maryland Avenue, S.W. 

Washington, D.C. 20024 

(202) 479-1200 

30.Judy Boggs 

White House Interagency Law Income 

Opportunity Advisory Board 

White House 

Washington, D.C. 20500 

31.Christina Metzler 

Associate Director 

National Association of Developmental 

Disabilities Council 

1234 Massachusetts Avenue N.W., 

Suite 103 

Washington, D.C. 20005 

(202) 347-1234 

32. H. Rutherford Turnbull, III 

Kennedy Foundation 

1350 New York Avenue, N.W. Washington, D.C. 20005 

270 
33. Fran Smith 

United Cerebral Palsy Association 

1522 K Street, N.W. 

Suite 1112 

Washington, D.C. 20005 

34.Yvonne A. Fleming 

4359 Dubois Place, S.E. 

Washington, D.C. 20019 

35. Carolyn Doppelt Gray 

Commissioner 

Administration on Developmental 

Disabilities 

200IndependenceAvenue, S.W. 

Washington, D.C. 20201 

36. Bernard Wagner, Ph.D., FAAMD 

American Association on Mental Retardation 

1719 Kalorama Road, N.W. 

Washington, D.C. 20009 

37. Mary S. DeRiso 

Director of Governmental Affairs American 

Association on Mental Retardation 

1719 Kalorama Road, N.W. 

Washington, D.C. 20009 

38. Virginia J. Williams 

c/o Georgetown University 

Child Development 

3800 Reservoir Road, N.W., 

Room CG54 

Washington, D.C. 20007 

(202) 687-8807 

39. Tawara Taylor 

UAF 

Georgetown University 

3800 Reservoir Road, N.W. Washington, D.C. 20007 

(202) 687-8807 

40. Brent Tolman 

UAF 

Georgetown University 

3800 Reservoir Road, N.W. Washington, D.C. 20007 

(202) 687-8807 

41. Ron Tyson 

UAF 

Georgetown University 

3800 Reservoir Road, N.W. 

Washington, D.C. 20007 

(202) 687-8807 

42. Naomi Karp 

U.S. Department of Education 

400 Maryland Avenue, S.W. 

Washington, D.C. 20202 

43. Allan I. Bergman 

Deputy Directorfor Governmental Activities 

United Cerebral Palsy Association, Inc. 

1522 'K' Street, N.W. 

Washington, D.C. 20005 

44. Paul Hippolitus 

Acting Director, Office of Plans, 

Projects & Services 

President's Committee on Employment 

of People with Disabilities 

Department of Labor 

1111 - 20th Street, N.W. - Room 600 

Washington, D.C. 20036 

(202) 653-5011 

45.George Smith 

Acting Administrator 

MRDDA 

429 '0' Street, N.W. 

Washington, D.C. 20001 

(202) 673-7560 

46.M. Doreen Croser 

Executive Director 

American Association on Mental Retardation 

1719 Kalorama Road, N.W. 

Washington, D.C. 20009 

47.Jose Ortiz Dialiot 

Director, Puerto Rico Public Affairs 

Administration 

100 17th Street, N.W. 

Washington, D.C. 20005 

(202) 778-0713 

48.Jane Deweerd 

Administration for Children, Youth 

and Families 

Department of Health & Human Services 

Room 5118 - Donohoe Building 

400 6th Street, S.W. 

Washington, D.C. 20024 

(202) 755-7944 

49.Laura D. Baker 

1100 - 17th Street, N.W. 

Washington, D.C. 20036 

(202) 778-0723 

50.Delorious Branic 

Program Analyst 

DHS - Social Services Planning and 

Development 

1st & I Streets, S.W. - Room 306 

Washington, D.C. 20017 

51.Jerome Schiele 

Mental Retardation and Developmental 

Disabilities Administration 

429 '0' Street, N.W. 

Washington, D.C. 20001 

(202) 673-6658 

52.Hermon H. Brown 

Mental Retardation and Developmental 

Disabilities Administration 

429 '0' Street, N.W. 

Washington, D.C. 20001 

(202) 673-7722 

53. Denise E. Nedab 

Mental Retardation and Developmental 

Disabilities Administration 

Bureau of Community Services 

429 "0" Street, N.W. 

Washington, D.C. 20001 

(202) 673-4500 

271 
54. Dorothy Stewart 

Office of Health Care Financing 

6531 7th Street, N.W. 

Washington, D.C. 20012 

(202) 829-0145 

55. Edgard Perez 

Office of Policy, Planning and Legislation 

Department of Health and Human Services 

200 Independence Avenue, S.W. 

Washington, D.C. 20201 

(202) 472-3026 

FLORIDA 

1. Marcia Hill 

Director 

Developmental Services Program Department 

of Health and Rehabilitation Services State of 

Florida 

1311 Winewood Boulevard - Building 

5 - Room 215 

Tallahassee, Florida 32399-0700 

(904) 488-4257 

2. Susan Gleeson, R.N., M.S.N. 

638 Bird Bay Drive, East, #211 

Venice, Florida 34292 

(813)755-1511x4542 (work) 

3. Kathleen W. Burton 

Advocacy Center for Persons 

with Disabilities, Inc. 

2661 Executive Center Circle West Suite 209 

Tallahassee, Florida 32301 

(904) 488-9071 x113 

4. Dolores Norley 

Attorney and Board Member 

Advocacy Center for Persons 

with Disabilities, Inc. 

529 North Sans Souci Avenue 

Deland, Florida 32720 

(904) 488-9071 x113 

GEORGIA 

1. R. Dwain Blackston, M.D. 

Division of Medical Genetics 

Department of Pediatrics 

Emory University School of Medicine 2040 

Ridgewood Drive 

Atlanta, Georgia 30322 

(404) 727-5731 

2. Mildred Hill 

1851 Ram Runway 

College Park, Georgia 30337 

 3. Ginny L. Riley 

Program Development Specialist Retarded 

Citizens - Atlanta 

Suite 110 

1687 Tully Circle N.E. 

Atlanta, Georgia 30329 

(404) 321-0877 

 4. Frank Murphy 

1110 Hope Road 

Atlanta, Georgia 30338 

(404) 587-5000 

5. Charles M. Kimber 

Division of MH and MR 

878 Peachtree Street, N.E. 

Atlanta, Georgia 30309 

(404) 894-6313 

GUAM 

1. Del Fina Basa 

Mental Retardation Advocacy Office 

P. 0. Box 8830 

Tamuning, Guam 96911 

(671) 646-9026 

2. Florent Northway 

Mental Retardation Advocacy Office 

P.0. Box 8830 

Tamuning, Guam 96911 

3. Josefina M. Toves 

4. Box 143 

Agana, Guam 96910 

(632) 472-8313 

5. Jesus C. Toves 

P. 0. Box 143 

Agana, Guam 96910 

HAWAII 

IDAHO 

ILLINOIS 

1. Jim H. DeOre 

Executive Director National Foundation 

for the Handicapped 

P. 0. Box 5227 

Oak Brook, Illinois 60521 

2. Howard P. Blackman, Ed.D. 

Executive Director 

LaGrange Area Department of Special 

Education 

1301 W. Cossitt Avenue 

LaGrange, Illinois 60525 

(312) 354-5730 

3. David Braddock 

Professor, University of Illinois at Chicago 

1640 West Roosevelt 

Chicago, Illinois 60608 

(312) 655-4396 

4. Bonnie Lou Gladden

Rehabilitation Services Advisor 

Illinois Department of Rehabilitation Services 

622 East Washington - 3rd Floor 

Springfield, Illinois 62794-9429 

(217) 785-7751 

5. Cecelia F. Malnar 

Sr. VP-Corporate Planning 

Charter Mgnt. Group, Ltd. 

272 
340 W. Butterfield Road, Suite 3C 

Elmhurst, Illinois 60126 

(312) 832-9705 

6. Tony Signorelli 

Sr. VP-Corporate Operations 

Charter Management Group, Ltd. 

340 W. Butterfield Road, Suite 3C 

Elmhurst, Illinois 60126 

(312) 832-9705 

7. Cyndi Amerlan 

Adm. Assistant-Foundation for the 

Handicapped 

340 W. Butterfield Road, Suite 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

8. Terence Sheen 

Chief Legal Counsel 

Foundation for the Handicapped 

340 W. Butterfield Road, Suite 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

9. Duane Thompson 

Consultant 

Foundation for the Handicapped 

340 W. Butterfield Road, Suite 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

10.Mrs. Duane Thompson 

Foundation for the Handicapped 

340 W. Butterfield Road, Suite 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

11.John Racila 

Consultant 

Foundation for the Handicapped 

340 W. Butterfield Road, Suite 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

12.Michael Welgat 

Consultant 

National Foundation for the Handicapped 

340 W. Butterfield Road, Suite 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

13.H. William Collins 

Chairman-National Foundation for the 

Handicapped 

340W. Butterfield Road, Ste. 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

14. Gordon Bednorz 

President-National Foundation for the 

Handicapped 

340W. Butterfield Road, Ste. 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

15. Mrs. Madeline Spradlin 

Treasurer-National Foundation for the Handicapped 

340W. Butterfield Road, Ste. 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

16. Robert Funk 

 Director-National Foundation for the 

Handicapped 

340 W. Butterfield Road, Ste. 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

 17. Elsie Funk 

 340 W. Butterfield Road, Ste. 3C 

 Elmhurst, Illinois 60126 

 (312) 832-9700 

 18. Sarah Hathaway 

Director-National Foundation for the 

Handicapped 

340 W. Butterfield Road, Ste. 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

 19. Betty Meier 

Director-National Foundation for the 

Handicapped 

340W.ButterfieldRoad, Ste.3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

 20. Anna Wildermuth 

Director-National Foundation for the 

Handicapped 

340W. Butterfield Road, Ste. 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

 21. Virginia Knuepfer 

Director-National Foundation for the 

Handicapped 

340 W. Butterfield Road, Ste. 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

22. Margaret Gutzmer 

 Assoc. Director-National Foundation for the 

Handicapped 

 340 W. Butterfield Road, Ste. 3C 

 Elmhurst, Illinois 60126 

 (312) 832-9700 

23.William Koche 

 Trustee-National Foundation for the 

Handicapped 

340 W. Butterfield Road, Ste. 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

24. Dorcia Koche 

340 W. Butterfield Road, Ste. 3C 

Elmhurst, Illinois 60126 

(312) 832.9700 

25. Dr. William Tansey 

Director-National Foundation for the 

Handicapped 

340 W. Butterfield Road, Ste. 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

26. Rainer Weigel 

Director-National Foundation for the 

Handicapped 

340 W. Butterfield Road, Ste. 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

273 
27. Larry Russell 

Executive Director of NARSAD 

340 W. Butterfield Road, Ste. 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

28. Mary Mice Myers 

Trustee-National Foundation for the 

Handicapped 

340W. Butterfield Road, Ste. 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

29. Barbara Racila 

Director-National Foundation for the 

Handicapped 

340 W. Butterfield Road, Ste. 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

30. Debra Dickinson 

Howe Developmental Center-Unit 6 

7600 West 183rd Street 

Tinley Park, Illinois 60477 

31. Paul L Medlin 

Senior Vice President 

Cooperate Development 

National Foundation for the 

Handicapped 

P.O. Box 5227 

Oak Brook, Illinois 60521 

(312) 832-9700 

32. Donald J. Dew 

Habilitative Systems, Inc. 

415 S. Kilpatrick 

Chicago, Illinois 60644 

(312) 261-2252 

33. Ira L Collins 

100 E. Jeffery 

Kankakee, Illinois 60901 

(815) 939-8201 

34. Mary Ann Poulos 

DMHDD 

Elgin Mental Health Center 

750 S. State 

Elgin, Illinois 60123 

(312) 742-1040 

35. Rochelle T. Curry 

City of Chicago 

Department of Aging and Disability 

510 North Peshtigo Court 3A 

Chicago, Illinois 60611 

36. Thomas Nolan National 

Foundation for the Handicapped 

340 W. Butterfield Road, Ste. 3C 

Elmhurst, Illinois 60126 

(312) 832-9700 

INDIANA 

IOWA 

1. Rachel D. Warren, M.S. 

Director, National Resource Center on 

Family Based Services 

University of Iowa 

Oakdale Hall, Room N-240 

Oakdale, Iowa 52319 

(319) 335-4123 

KANSAS 

1. Viola K. Davidson 

(Member of Kansas Planning Council 

on DD Services) 

R. R. #4 

Paola, Kansas 66071 

(913) 294-2573 

2. Patricia Kells 

Kansas State Department of Education 

Kansas State Education Building 

120 East 10th Street 

Topeka, Kansas 66612-1103 

3. Jean Ann Summers 

Director, KS, UAP-Lawrence 

Vice-Chair, KS DD Council 

Bureau of Child Research 

University of Kansas 

Lawrence, Kansas 66045 

(913) 864-4950 

4. Martha Lynch 

6724 W. 109th 

Overland Park, Kansas 66211 

(913) 648-7358 

5. Richard Shults 

Social and Rehabilitation Services 

Mental Health and Retardation Services 

Dockin State Office Building, 5th Floor 

Topeka, Kansas 66612 

(912) 296-3561 

KENTUCKY 

1. Juanita W. Fleming, Ph.D. 

Associate Vice-Chancellor 

University of Kentucky Medical Center 

760 Rose Street 

Lexington, Kentucky 40536 

(606) 233-5623 

LOUISIANA 

MAINE 

1. Susan Brooks Parker 

Commissioner 

Department of Mental Health and 

Mental Retardation 

411 State Office Building 

Station 40 

Augusta, Maine 04333 

(207) 289-4223 

2. Valerie R. Landry 

Executive Director 

Creative Work Systems 

13 Lund Road 

Saco, Maine 04072 

(207) 282-4173 

3. Mr. and Mrs. Martin Ulan 

R.D. #1, Box 39 

Cape Neddick, Maine 03902 

(207) 363-4117 

4. John L. Martin 

Speaker of the House 

274 
Maine House of Representatives 

Speaker's Office 

Augusta, Maine 04333 

(207) 289-1300 

MARYLAND 

1. Kenneth J. Shaw 

Director 

Rehabilitation and Research 

Goodwill Industries of America, Inc. 

9200 Wisconsin Avenue 

Bethesda, Maryland 20814-3896 

(301) 530-6500 

2. Aaron J. Prero, Ph.D. 

Economist 

Social Security Administration 

Room 2-0-5, Annex Building 

Baltimore, Maryland 21235 

3. Kenneth McGill 

Acting Director 

External Affairs 

Department of Health and Human 

Services 

Social Security Administration 

4-J-5 West Highrise Building 

Baltimore, Maryland 21235 

8-625-3988 

4. Clifford Hubbard 

Superintendent 

Bureau of Habilitation Services 

(Forest Haven) 

3360 Center Avenue 

Laurel, Maryland 20707 

(301) 725-3600 x2870 

5. Beverly C. Mason, RN, PNP, MS, CQAP 

Quality Assurance Coordinator 

Office of Superintendent 

Bureau of Habilitation Services 

CA Building 

3360 Center Avenue 

Laurel, Maryland 20707 

(301) 725-3600 x2872 

6. Eleanor D. Dibble, DSW

Head, Special Need Populations 

NIMH/DCR/Child and Adolescent Disorders 

Room 10-104 

5600 Fishers Lane 

Rockville, Maryland 50827 

(301) 443-5944 

7. Phyllis W. Berman, Ph.D. 

Health Scientist Administrator 

Mental Retardation Branch 

National Institute of Child Health 

and Human Development 

National Institutes of Health 

Bethesda, Maryland 20892 

(301) 496-1383 

8. Claudia B. Horn 

Assistant Director 

Rehabilitation Services 

Goodwill Industries of America 

9200 Wisconsin Avenue 

Bethesda, Maryland 20814 

(301) 530-6500 

9. Margaret K. Schafer, MS, OTR 

Communications Specialist-Practice Div. 

American Occupational Therapy 

Association 

1383 Piccard Drive, Box 1725 

Rockville, Maryland 20850-4375 

(301) 948-9626 - x356 

10. Winston E. Cochran, M.D. 

5708 Bradley Boulevard 

Bethesda, Maryland 20814 

(301) 656-4237 

11. Gloria Grimes Cochran, M.D., MPH 

5708 Bradley Boulevard 

Bethesda, Maryland 20814 

(301) 656-4237 

12. Lois M. Meszaros, Ph.D. 

Department of Health and Mental Hygiene 

201 W. Preston Street 

Baltimore, Maryland 21201 

13. Paula Hirt 

Department of Health and Mental Hygiene 

201 W. Preston Street 

Baltimore, Maryland 21201 

14. Harold M. Kushner, C.PA. 

Department of Health and Mental Hygiene 

201 W. Preston Street 

Baltimore, Maryland 21201 

15. Diane Arbuthnot Regional 

Director ARC-US 

11721 Reisterstown Road 

Reisterstown, Maryland 21136 

(301) 526-4448 

16. Dr. John A. Haigh 

Maryland State Department of Education 

200 West Baltimore Street 

Baltimore, Maryland 21201 

(301) 333-2496 

17. Nancy Kirchner 

Department of Health and Mental Hygiene 

201 W. Preston Street 

Baltimore, Maryland 21201 

18. Cindy Kauffman 

Department Director 

Kennedy Institute 

2911 E. Biddle Street 

Baltimore, Maryland 21213 

(301) 522-7500 

19. Paula Cornish 

Senior Planning Coordinator 

Kennedy Institute 

2911 E. Biddle 

Baltimore, Maryland 21213 

(301) 522-7500 

275 
20. William E. Buchanan 

President 

Adaptive Living, Inc. 

11089 Swansfield Road 

Columbia, Maryland 21044 

(301) 730-1289 

21. David Rust 

Social Security Administration 

900 Altemeyer Building 

6401 Security Blvd. 

Baltimore, Maryland 21235 

22. Rudolf P. Hormuth 

Specialist in Services for 

Mentally Retarded Children 

BMCHRD - Parklawn Building 

Room 6-11 

5600 Fishers Lane 

Rockville, Maryland 20857 

(301) 443-1080 

23. Irene Forsman 

Nurse Consultant 

BMCHRD - Parklawn Bldg., Room 6-11 

5600 Fishers Lane 

Rockville, Maryland 20857 

(301) 443-1080 

24. Elaine Eklund 

Executive Director 

American Association of University 

Affiliated Programs (AAUAP) 

Suite 406 

8605 Cameron Street 

Silver Spring, Maryland 20910 

25. Linda C. Poe 

10350 Crossbeam Circle 

Columbia, Maryland 21044 

26. Anne Rudigier 

AAUAP 

8605 Cameron Street, #406 

Silver Spring, Maryland 20910 

(301) 588-8252 

27. Al Guida 

AAUAP 

8605 Cameron Street, #406 

Silver Spring, Maryland 20910 

(301) 588-8252 

28. Larry Goldberg 

Assistant Attorney General 

Maryland Attorney General's Office 

300 W. Preston Street, Room 302 

Baltimore, Maryland 21201 

(301) 225-1846 

29. Amanda L. Smalls 

1792 Forest Park Drive 

Forestville, Maryland 20747 

(301) 373-6503 

30. Constance Pledger 

Community Developer Commissioner 

for Persons with Disabilities 

9201 Basil Court Landover, Maryland 20785 

(301) 925-5163 

31. Karen V. Chapple 

Epilepsy Foundation of America 

4351 Garden City Drive 

Landover, Maryland 20785 

(301) 459-3700 

32. Becky Lambros 

Epilepsy Foundation of America 

4351 Garden City Drive 

Landover, Maryland 20785 

(301) 459-3700 

33. Allen Everhart 

Epilepsy Foundation of America 

4351 Garden City Drive 

Landover, Maryland 20785 

(301) 459-3700 

34. William Oshinsky 

1 Lakonheath Court 

Potomac, Maryland 20854 

(301) 983-1131 

35. Jerry J. Cuayville, R.N/CNP 

Nurse Practitioner 

1425 Old Ocean City Road 

Salisbury, Maryland 21801 

(301) 546-1836 

MASSACHUSETTS 

1. William E. Kiernan, Ph.D. 

Director of Rehabilitation 

Developmental Evaluation Clinic 

Children's Hospital Medical Center 

300 Longwood Avenue 

Boston, Massachusetts 02115 

(617) 735-6506 

2. Valerie J. Bradley 

President 

Human Services Research Institute 

2336 Massachusetts Avenue 

Cambridge, Massachusetts 02140 

(617) 876-0426 

3. Mary C. Cerrato, Ph.D. 

Chief Executive Officer 

The Accreditation Council on 

Developmental Disabilities 

Suite 202 

120 Boylston Street 

Boston, Massachusetts 02116 

(617) 426-7909 

4. W. Robert Curtis, M.P.H., Sc.D., J.D. 

1 Devonshire Place, Suite 2606 

Boston, Massachusetts 02109 

(617) 536-3386 

5. Francis P. Kelley 

Superintendent 

Wrentham State School 

P. O. Box 144 

Wrentham, Massachusetts 02093 

6. John J. Cipolla 

Health Commissioner for the City of Springfield 

Springfield Public Health Department 

1414 State Street 

Springfield, Massachusetts 01109 

(413) 787-6713 

276 
7. Josef Reum 

Assistant Commissioner 

Policy and Planning 

160 North Washington Street 

Boston, Massachusetts 02114 

(617) 727-5608 

8. Hans H. Toegel 

Deputy for Mental Health and Mental 

Retardation 

Executive Office of Human Services 

One Ashburton Place, Room 1109 

Boston, Massachusetts 02118 

(617) 727-8036 

9. Joanne Simons Derr 

National Down Syndrome Congress 

60 Shepard Avenue 

Swampscott, Massachusetts 01907 

10. Mary McCarthy 

Department of Mental Retardation 

160 N. Washington Street 

Boston, Massachusetts 02114 

(617) 727-5608 

11. Deborah E. Cohen, Ph.D. 

Shriver Center 

200 Trapelo Road 

Waltham, Massachusetts 02254 

(617) 647-0293 

12. Barbara Konopka 446 Bernardston Road 

Greenfield, Massachusetts 01301 

(413) 223-5155 

13. C. Lynn Chambers 

Shriver Center 

25 South Street 

Rockport, Massachusetts 01966 

(617) 642-0222 

MICHIGAN

1. Teresa E. Smith 

Michigan NW Area - ARC 

27502 Windsor Street 

Garden City, Michigan 48135 

(313) 255-5454 

2. Ann M. Zuzich 

Special Projects Coordinator 

Developmental Disabilities Institute 

Wayne State University 

University Health Center, 6E 

4201 St. Antoine 

Detroit, Michigan 48201 

(313) 577-2654 

3. Mr. and Mrs. Robert Smith 

800 McKinley Street 

Plymouth, Michigan 48170 

MINNESOTA 

1. Stuart J. Schleien, Ph.D. 

Associate Professor 

School of Physical Education and Recreation 

University of Minnesota 

208 Cooke Hall 

1900 University Avenue, S.E. 

Minneapolis, Minnesota 55455 

(612) 625-4073 

2. Colleen Wieck, Ph.D. 

 Executive Director 

 Minnesota Governor's Planning Council 

on Developmental Disabilities 

300 Centennial Office Building 

658 Cedar Street 

St. Paul, Minnesota 55155 

(612) 296-9964 

3. Terri Vandercook 

Minnesota University Affiliated Program 

on Developmental Disabilities 

6 Pattee Hall 

150 Pillsbury Drive, S.E. 

Minneapolis, Minnesota 55455 

4. Dr. Edward Skarnulis 

Director, Division for Persons with 

Developmental Disabilities 

State of Minnesota 

444 Lafayette 

St. Paul, Minnesota 55101 

(612) 433-2768 

5. Dorothy Skarnulis 

Executive Director 

Association for Retarded Citizens 

65 East Kellog 

St. Paul, Minnesota 55101 

MISSISSIPPI 

MISSOURI 

MONTANA 

1. Lawrence P. Noonan 

Chief of Field Service/Program Bureau 

Department of Social and Rehabilitation Services 

111 Sanders 

Helena, Montana 59601 

(406) 444-2995 

NEBRASKA 

1. Glenda Davis 

Executive Director 

Citizen Advocacy, Inc. 

708 West 1st Street 

Grand Island, Nebraska 68801 

(308) 381-2160 

2. DeAnn Hughes 

State of Nebraska 

Department of Health 

Box 95007 

Lincoln, Nebraska 68509-5007 

3. Robert Seiffert 

Administrator 

Medical Services Division 

Nebraska Department of Social Services 

P.0. Box 95026 

Lincoln, Nebraska 68509-5026 

4. 011ie Rector 

7089 Seward 

Omaha, Nebraska 68104 

277 
5. Janet Miller 

2109 Bancroft 

Omaha, Nebraska 68108 

6. Andrew Levitas, M.D. 

Department of Psychiatry 

University of Nebraska Medical Center 

42nd and Dewey Avenue 

Omaha, Nebraska 68105-1065 

(402) 559-5110 

NEVADA 

NEW HAMPSHIRE 

1. Richard Lepore 

Assistant Division Director 

Developmental Services 

Division of Mental Health and 

Developmental Services 

Health and Human Services Building 

6 Hazen Drive 

Concord, New Hampshire 03301 

(603) 271-4706 

2. W. Carl Cooley, M.D. 

Clinical Genetics and Child 

Development Center 

Dartmouth-Hitchcock Medical Center 

Hanover, New Hampshire 03756 

(603) 646-8453 

NEW JERSEY 

1. John Scagnelli 

Executive Director 

Association for Retarded Citizens/NJ 

985 Livingston Avenue 

North Brunswick, New Jersey 08902 

(201) 246-2525 

2. Dr. Joan C. Luckhardt Director 

Mainstreaming Medical Care 

ARC/NJ 

985 Livingston Avenue 

North Brunswick, New Jersey 08902 

(201) 246-2525 

3. Thomas Baffuto 

Director, Supported Work Program 

ARC/NJ 

985 Livingston Avenue 

North Brunswick, New Jersey 08902 

(201) 246-2525 

4. Stuart Lepper 

Director, Plan of NJ 

ARC/NJ 

985 Livingston Avenue 

North Brunswick, New Jersey 08902 

(201) 246-2525 

5. Bernice A. Scagnelli 

Nurse Consultant 

ARC/Morris Unit 

P. O. Box 123 

Morris Plains, New Jersey 07950 

(201) 326-9750 

NEW MEXICO 

NEW YORK

1. Emily P. Kingsley 

210 So. Greely Avenue 

Chappagua, New York 10514 

(212)595-3456 or (914)238-9012 

2. Hank A. Bersani, Jr., Ph.D. 

Assistant Professor in Special Education 

724 Comstock Avenue 

Syracuse University 

Syracuse, New York 13244-4130 

(315) 423-3851 

3. Timothy J. O'Brien 

10 Kensington Court 

Delmar, New York 12054-2820 

(518) 474-5571 

4. Shirley Cohen, Ph.D. 

Associate Dean 

Programs in Education 

Hunter College, City University of N.Y. 

695 Park Avenue 

New York, New York 10021 

(212) 772-4621 

5. Matthew P. Janicki, Ph.D. 

Director for Aging Services 

NYS - OMRDD 

44 Holland Avenue 

Albany, New York 12229 

(518) 473-9598 

6. George Daniels, BS, MS 

Director of Staff Development and 

Training at Sunmount DDSO 

NYS - OMRDD 

Tupper Lake, New York 12986 

(518) 359-3311 x303 

7. Bernard Carabello Director 

Self-Advocacy Association of New York 

1225 Broadway 

New York, New York 10001 

(212) 889-5760 

8. Barbara Olivier 

Executive Director 

United Cerebral Palsy Association of 

Westchester County, Inc. 

Box 555 

Purchase, New York 10577 

9. Betty Lupinaccii 

Volunteer (UCP) 

50 New Street 

Rye, New York 10580 

(914) 967-4189 

10.Linda M. McKeon 

105 Fieldcrest Drive 

Camillus, New York 13031 

(000) 488-6640 

11. Thomas McKeon 

Assistant Director 

Transitional Living Services of 

Onondaga County, Inc. 

423 West Onondaga Street 

Syracuse, New York 13202 

(315) 478-4151 

278 
12.Beth S. Brown 

Sr. Social Worker-Roosevelt Hospital 

Developmental Disabilities Center 

230 West End Avenue, #2-G 

New York, New York 10023 

(212) 877-9563 

13.William D. Combes 

P.A.D.D. Coordinator 

99 Washington Avenue, Suite 1002 

Albany, New York 12210 

(518) 473-7378 

14.Victoria Ruocco 

N.Y.C. P & A Coordinator 

80 Maiden Lane, Suite 320-B 

New York, New York 10038 

(212) 804-1639 

15.Judy Mastachetti 

Wassaic Developmental Center 

Box 27 

Wassaic, New York 12592 

(914) 877-6821 x3211 

16. Shirley J. Reynolds 

Program Planner 

New York State Developmental 

Disabilities Planning Council 

OneEmpireStatePlaza, 10thFloor 

Albany, New York 12223 

(518) 474-3655 

17. Patricia A. Caggiano 

6909 15th Avenue 

Brooklyn, New York 11228 

(718) 656-7373 

18.John Syrian 

Monroe County Association for 

Retarded Citizens (ARC) 

248 Clay Avenue 

Rochester, New York 14613 

(716) 458-8538 

19. Tanoula Hadjiparaskevas 

Program Director-Adult Services 

The Shield Institute 

55 Wallace Drive 

Plainview, New York 11803 

(516) 433-1189 

20.Georgeanna Hepner, R.N. 

Director of Health and Rehabilitation Services 

The Shield Institute 

144-61 Roosevelt Avenue Flushing, 

New York 11354 

21.Gayle V. Lewis 

Assistant Director 

Developmental Evaluation Unit 

Sydenham NFCC 

215 West 125th Street 

New York, New York 10027 

22.Annamay C. Staupt 

Director of QA 

34 Redfield Road 

Island Park, New York 11558 

(516) 889-5248 

23.Lorraine Jacobson 

61-20 Grand Central Parkway 

Forest Hills, New York 11375 

24. Lilia A. Evangelista, M.D. 

Medical Director 

Lincoln Children's Evaluation 

Rehabilitation Clinic 

234 E. 149th Street 

Bronx, New York 10451 

(212) 579-5444 

25. Eveleyn D. Batts 

Dydenham Neighborhood Family Care Center 

215 West 125th Street 

New York, N.Y. 10027 

Office: (212) 678-5368 

Home: (914) 723-8169 

NORTH CAROLINA 

1. Matthew C. Johnsen 

Executive Director 

ARC/NC 

16 Rowan Street, Suite 204 

Raliegh, North Carolina 27619 

(919) 782-4632 

2. Susan C. Hartley 

Lead Guardianship Specialist 

ARC/NC 

16 Rowan Street, Suite 204 

Raleigh, North Carolina 27619 

(919) 782-4632 

3. Betsy Hodges, M.S.W. Social Work Department 

Western Carolina Center 

Enola Road 

Morganton, North Carolina 28655 

(704) 433-2801 

4. Nancy Martin, M.S.W. 

Social Work Department 

Western Carolina Center 

Enola Road 

Morganton, North Carolina 28655 

(704) 433-2801 

5. Tammy Fish, M.S.W. 

Social Work Department 

Western Carolina Center 

Enola Road 

Morganton, North Carolina 28655 

(704) 433-2801 

6. Ann T. Smith, A.C.S.W. 

Social Work Department 

Western Carolina Center 

Enola Road 

Morganton, North Carolina 28655 

(704) 433-2801 

NORTH DAKOTA 

OHIO 

Vincent D. Pettinelli, ACSW, FAAMR 

President 

VOCA Corporation 

1350W. Fifth Avenue, Suite 214 

Columbus, Ohio 43212 

(614) 486-5928 

279 
2. Yvonne Bullock Fryberger 

University Affiliated Cincinnati Center 

for Developmental Disorders 

Pavilion Building 

Elland and Bethesda Avenues 

Cincinnati, Ohio 45229 

(513) 559-4639 

3. Laura Eblin 

Director 

Ohio Public Images, Inc. 

3894 Indian Ripple Road 

Dayton, Ohio 45440 

(513) 426-9993 

4. Patrick Rafter 

Ohio Department of Mental Retardation 

30 East Broad Street 

Columbus, Ohio 43215 

(614) 466-5214 

5. Terry Wallace 

Ohio Department/MRDD 

30 East Broad Street 

Columbus, Ohio 43215 

(614) 466-5214 

OKLAHOMA 

1. Jean G. Gumerson 

#1 Benham Place, Suite 700 

9400 North Broadway 

Oklahoma City, Oklahoma 73118 

OREGON 

PENNSYVLANIA 

1. Rita M. Boynton 

Area Agency on Aging Westmoreland County 

2482 South Grande Boulevard 

Greensburg, Pennsylvania 15601-8904 

2. Kevin Casey 

Executive Director 

Pennsylvania Protection and Advocacy, Inc. 

116 Pine Street 

Harrisburg, Pennsylvania 17101 

(717) 236-8110 

3. Mrs. James F. DeOre 

221 E. Peach Street 

Connellsville, PA 15425 

4. James F. DeOre 

221 E. Peach Street 

Connellsville, PA 15425 

5. Yvonne Husic 

Coordinator, Advocacy Services 

 Association for Retarded Citizens, 

 Pennsylvania 

123 Forster Street 

Harrisburg, PA 17102 

(717) 234-2621 

6. Carol Cochran Coordinator, Governmental 

Affairs Association for Retarded Citizens, 

Pennsylvania 

123 Forster Street 

Harrisburg, PA 17102 

(717) 234-2621 

7. G. David Smith, Ph.D. 

Office of Mental Retardation 

Director, Strategic Planning 

302 Health &Welfare Building 

Harrisburg PA 17120 

(717) 787-1885 

8. Phyllis Welborn 

DPW Office of Mental Retardation 

302 Health &Welfare Building 

Harrisburg, PA 1720 

(717) 783-5058 

9. Susan Bartholomew 

Mental Retardation Program Specialist 

Department of Public Welfare 

Commonwealth of Pennsylvania 

1400 Spring Garden Street, Room 502 

Philadelphia, PA 19130 

(215) 560-2851 

10. Al Bussone 

Elwyn, Inc. 

Elwyn, PA 19063 

11.Prasad Punnoose 

Turtle Creek Valley MH/MR, Inc. 

519 Penn Avenue 

Turtle Creek, PA 15145 

(412) 824-8514 

12.Susan Bayer 

RD 1, Spruce Lane Box 63D 

Bradfordwoods, PA 15015 

(412) 935-2207 

13. Marjorie Mudrick 

100C Heyburn Road 

Chadds Ford, PA 19317 

(215) 358-1936 

14. John W. Huegel Erie County 

MH/MR 

459 W. 6th Street 

Erie, PA 16509 

(814) 459-3059 

15. John Stupak 

Horizon House Developmental Services, Inc. 

120 S. 30th Street 

Philadelphia, PA 19104 

(215) 386-3838 

16. Carol Gray 

Cumberland Perry Association for 

Retarded Citizens 

117N. Hanover Street, Box 386 

Carlisle, PA 17013 

(717) 249-2611 

17. Anne M. Brown 

RD #4, Box 234A 

Carlisle, PA 17013 

(717) 249-2611 

18. Michael Walling Elwyn, Inc. 

111 Elwyn Road 

Elwyn, PA 19063 

(215) 891-2081 

280 
19. Michele Novotni, Ph.D. 

1 Tranquility Drive, R.D. #1 

Malvern, PA 19355 

20. Ken McDonald 

291 Prospect Avenue 

Downingtown, PA 19335 

(215) 328-6464 

21. Mary M. Robertshaw 

Director of Waeener Services 

220 W. Wyncliffe Avenue 

Clifton Heights, PA 19018 

22. Jackie A. Skirven 

Case Management Supervisor 

INTERAC 

6012 Ridge Avenue 

Philadelphia, PA 19128 

(215) 487-3030 

23. John R. Phillips 

Supervisor - TAC 

Eastgate 8 

Monessen, PA 15062 

(412) 684-9000 x171 

PUERTO RICO 

1. Alina Vales, M.D. 

Director MR System 

Mental Health Secretariat 

Box 61 - GPO 

San Juan, PR 00936 

(809) 783-8520 x231 

2. Maria De Los A De Jesus 

Administrative Liaison MR System 

Mental Health Secretariat 

Box 61 - GPO 

San Juan, PR 00936 

(809) 793-4720 

RHODE ISLAND 

1. James V. Healey 

Executive Director 

Rhode Island Association for Retarded 

Citizens 

99 Bald Hill Road 

Cranston, Rhode Island 02920 

(401) 463-9191 

SOUTH CAROLINA 

1. Muriel W. O'Tuel, Ed.D. 

Assistant Superintendent 

Department of Education 

P.0. Box 1739 

Conway, South Carolina 29526 

(803) 248-2206 

2. Ann C. Pratt 

Center for Developmental Disabilities 

Benson Building/USC 

Columbia, S.C. 29208 

(803) 777-4471 

3. Lois Eargle 

P.0. Box 802 

Conway, South Carolina 29526 

(803) 248-3214 

SOUTH DAKOTA 

TENNESSEE 

1. Candy Young 

Staff Development Officer 

Department of Human Services 

Citizens Plaza Building 

400 Deaderick Street, Room 1100 

Nashville, Tennessee 37219 

(615) 741-2095 

2. John Whitaker 

Planning Officer 

Department of Human Services 

Citizens Plaza Building 

400 Deaderick Street, Room 1100 

Nashville, Tennessee 37219 

(615) 741-2095 or 2919 

TEXAS 

1. Lila G. Thompson 

Route 1, Box 3C 

Richmond, Texas 77469 

(713) 342-4332 

2. Darlene Topp 

Texas Planning Council for 

Developmental Disabilities 

5627 Verde Circle 

Harlingen, Texas 78552 

(512) 421-5750 

3. Jack Coston

Sabine Valley Regional Mental Health and 

Mental Retardation Center 

P.0. Box 6800 

Longview, Texas 75608 

(000) 297-2191 

4. Jeffrey Enzinna 

Richmond State School 

Texas Department of Mental 

Health and Mental Retardation 

2100 Preston 

Richmond, Texas 77469 

(713) 342-4681 

5. Stanley Thompson, M.D. 

Route 1, Box 3C 

Richmond, Texas 77469 

(713) 342-4332 

UTAH 

 1. Dr. and Mrs. Stanley Clark 

 1075 East Elm Avenue 

 Provo, Utah 84604 

 (801) 374-0520 

VERMONT 

VIRGIN ISLANDS 

1. Vernon A. Finch 

Director of Special Services 

Government of the V.I. 

Department of Human Services 

2-W53 Nazereth Est. 

St. Thomas, Virgin Islands 

(809) 774-0930 

281 
VIRGINIA 

1. Janice C. Schiff 

Director 

Residential Development 

Fairfax/Falls Church Community 

Services Board 

White Oak Tower 

301 Maple Avenue West, 3rd Floor 

Vienna, Virginia 22180 

2. Gregory Weigle 

261 Sunset Park Drive 

Herndon, Virginia 22070 

(703) 471-6821 

3. Cynthia Smith 

Mental Retardation Consultant 

Virginia Department of Mental Health 

and Mental Retardation 

P. O. Box 1797 

Richmond, Virginia 23214 

(804) 786-5313 

4. April Holmes 

Region Ten Community Services 

413 E. Market Street, Suite 103 

Charlottesville, Virginia 22901-5213 

(703) 972-1800 

5. Theodore D. Tjossem, Ph.D. 

1032 N. Randolph Street 

Arlington, Virginia 22201 

(703) 524-2897 

6. Martha Wingfield 

Henrico MH/MR Services 

10299 Woodman Road 

Glen Allen, Virginia 23060 

(804) 266-4991 

7. Linda C. Veldheer 

Director of Developmental Disabilities 

VA DMHMRSAS 

P.O. Box 1797 

Richmond, Virginia 23214 

(804) 786-5313 

8. Ellen b. Gillespie 

Director, MR Programs

Fairfax/Falls Church CSB 

301 Maple Avenue, West 

Vienna, Virginia 22180 

(703) 266-9564 

9. Anne L. Stewart 

University of Virginia 

164 Rugby Road 

Charlottesville, Virginia 22903 

(804) 924-3794 

10. Arlene Areno 

University of Virginia 

Special Projects Office 

164 Rugby Road 

Charlottesville, Virginia 22903 

(804) 924-4778 

11. K J. Moore 

 Cortana Corporation 

 Suite 406 

 7700 Leesburg Pike 

Falls Church, Virginia 22043 

12. Kathy Dazley Reynolds 

Region Ten Community Services 

413 E. Market Street, Suite 103 

Charlottesville, Virginia 22901-5213 

(703) 972-1800 

13. Aase J. Collins 

Assistant Executive Director 

National Association of Private 

 Residential Resources 

 6400H Seven Corners Place 

 Falls Church, Virginia 22044 

14. Margaret Ann Depaoli 

9524 Narragansett Place 

Vienna, Virginia 22180 

(703) 522-2002 

15. Linda Schulz 

10411 Woodbury Woods Court 

Fairfax, Virginia 22032 

(703) 250-5412 

16. Russell Moore 

Southside Virginia Training Center 

Prevocational Services 

P. O. Box 4110, Building 82 

Petersburg, Virginia 23803-0110 

(804) 524-7796 

17. Sarah A. Liddle 

Board of Rights of the Disabled 

Monroe Building 

101 N. 14th Street 

Richmond, Virginia 22191 

18. George R. Jarrell 

Virginia Commonwealth University 

921 W. Franklin Street 

Richmond, Virginia 23284 

19. Jim Goalder 

Consumer Empowerment Project 

Virginia Commonwealth University 

919 W. Franklin Street 

Richmond, Virginia 23284-0001 

(804) 257-1521 

20. E. Davis Martin 

Virginia Commonwealth University 

919 W. Franklin Street 

Richmond, Virginia 23284 

21. Crystal Noake Davis 

Virginia Commonwealth University 

919 W. Franklin Street 

Richmond, Virginia 23284 

WASHINGTON 

1. Donna D. Doerer 

Regional Director 

ARC/NETP (National Employment and 

Training Program) 

P. O. Box 22283 

Seattle, Washington 98122 

(206) 622-2075 

2. Mary Richardson, Ph.D. 

Director 

National Resource Institute on Children 

and Youth with Handicaps 

University of Washington, DCMRC 

Mail Stop WJ-10 

282 
Seattle, Washington 98195 

(206) 545-1350 

3. Earl Long, Jr. 

Residential Coordinator 

King County Human Services 

512 Smith Tower 

Seattle, Washington 98104 

(206) 344-5214 

WEST VIRGINIA 

1. Ashok S. Dey 

Director 

West Virginia University/University Affiliated 

Center for Developmental Disabilities 

(UACDD) 

509 Allen Hall 

Morgantown, West Virginia 26502-6122 

(304) 293-6220 

2. Renelle B. Grubbs 

Specialized Care and Community 

Placement Coordinator 

West Virginia University/University 

Affiliated Center for Developmental 

Disabilities (UACDD) 

509 Allen Hall 

Morgantown, West Virginia 26506-6122 

(304) 293-6220 

3. Sherry Wood-Shuman 

Training and Research Coordinator 

West Virginia University/University 

Affiliated Center for Developmental 

Disabilities 

509 Allen Hall 

Morgantown, West Virginia 26506-6122 

(304) 293-6220 

WISCONSIN 

1. James H. Despins 

Special Education Supervisor 

Mentally Retarded Programs 

Division for Handicapped Children 

 and Pupil Services 

Department of Public Instruction 

125 South Webster Street 

Box 7841 

Madison, Wisconsin 52707-7841 

(608) 266-3390 

2. Marion Bates 

Legislative Staff 

Wisconsin Developmental Disabilities Council 

P.0. Box 7851 

Madison, Wisconsin 53707-7851 

(608) 266-8264 

3. Mr. and Mrs. Alexander L. Napolitano 

1081 Laurel Court 

Watertown, Wisconsin 53094 

(414) 261-3050 x220 

4. Gail D. Jacob 

Program Director 

Options and Community Living, Inc. 

1954 E. Washington Avetitte 

Madison, Wisconsin 53704 

(608) 249-1585 

5. Dennis Harkins 

Department of Health 

and Social Services 

Division of Community Services 

1 West Wilson Street 

P.0. Box 7851 

Madison, Wisconsin 53707 

(608) 266-9329 

WYOMING 

283 
APPENDIX D 

PCMR MEMBERSHIP AND STAFF AT THE TIME OF THE PRESIDENTIAL FORUM 

284 
Chairperson Vice Chairperson 

The Honorable Otis R. Bowen, M.D. Albert L. Anderson, D.D.S. 

Members Term 

Lucia L. Abell 1986-

Martin S. Appel 1/ 1986- Howard P. Blackman, Ed.D. 1987- Robert W. Bush 1987-1988

Patricia A. Caggiano 1987- Dorothy Corbin Clark, R.N. 1982- Margaret A. Depaoli 1986- Jack R. Dulworth 1987- Lois Eargle 1985-1988

Vincent C. Gray 1982-

MatthewJ.Guglielmo 2/ 1985- Jean G. Gumerson 3/ 1986- Madeline B. Harwood 1982-1988

William Kirby Hummer, M.D. 4/ 1985- Roger Stanley Johnson, M.D. 1985-1988

Alexander L. Napolitano 1987- J. Alfred Rider, M.D., Ph.D. 1986- Ung Yun Ryo, M.D., Ph.D. 1985-1988

Dwight William Schuster, M.D. 1986- Martin S. Ulan 1986-

1/ Chairman, Full Citizenship Subcommittee 

2/ Chairman, Family and Community Services Subcommittee 

3/ Chairman, Public Affairs Subcommittee 

4/ Chairman, Prevention Subcommittee 

PCMR STAFF 

 Executive Director Deputy Executive Director 

 Vivian B. Levin Jim F. Young 

Family and Community Services Subcommittee Coordinator 

Janet T. Bolt, Forum Coordinator 

Full Citizenship Subcommittee Coordinator 

George N. Bouthilet, Ph.D. 

Prevention Subcommittee Coordinator 

Laverdia T. Roach 

Special Assignments and Exhibits 

Ashot P. Mnatzakanian 

Secretary to the Executive Director 

Peggy A. Butler 

Administrative Services Unit Staff 

Bena L. Smith, Chief 

Nancy O. Borders 

Angie D. Green 

Rosa M. Singletary 

Terry A. Visek 

285 
APPENDIX E 

286 
CONTRIBUTING AUTHORS 

ALBERT L. ANDERSON, D.D.S. 

San Diego, California 

and 

Vice Chairman 

President's Committee on Mental Retardation 

ROBERT C. ASHBY 

Deputy Assistant General Council Regulations 

and Enforcement Department of 

Transportation Washington, D.C. 

RONALD S. BARBER 

Department of Economic Security Division of 

Developmental Disabilities 

Phoenix, Arizona 

LINDA TOMS BARKER 

Berkeley Planning Associates 

Berkeley, California 

HENRYA."HANK"BERSANI, JR., PH.D. 

Assistant Professor 

Syracuse University 

Center on Human Policy 

Syracuse, New York 

OTIS R. BOWEN, M.D. 

Secretary 

Department of Health and Human Services and 

Chairperson 

President's Committee on Mental Retardation 

Washington, D.C. 

VALERIE J. BRADLEY 

President 

Human Services Research Institute 

Boston, Massachusetts 

BERNARD J. CARABELLO 

Director/Founder 

Self-Advocacy Association of New York 

New York, New York 

MARY C. CERRETO, PH.D. 

Chief Executive Officer 

Accreditation Council on Services for People with 

Developmental Disabilities 

Boston, Massachusetts 

JOHN W. CHROMY 

Director 

U.S. Chapter Operations 

Special Olympics International 

Washington, D.C. 

SHIRLEY COHEN, PH.D. 

Associate Dean 

Hunter College of the City University of New York, 

Division of Programs in Education 

New York, New York 

RONALD W. CONLEY, PH.D. 

Special Assistant 

Administration on Developmental Disabilities 

Washington, D.C. 

GEORGE H. DANIELS 

Director of Staff Development and Training at 

Sunmount DDSO 

Tupper Lake, New York 

GLENDA DAVIS 

Executive Director 

Citizen Advocacy Inc. 

Grand Island, Nebraska 

CURTIS L. DECKER 

Executive Director 

National Association of Protection 

and Advocacy Systems 

Washington, D.C. 

JAMES H. DeORE 

Executive Director 

National Foundation for the Handicapped 

Elmhurst, Illinois 

DONNA D. DOERER 

Former Regional Director 

Association for Retarded Citizens/U.S. National 

Employment and Training Program 

Seattle, Washington 

MARY A. FALVEY, PH.D. 

Associate Professor 

School of Education, Division of Special Education 

California State University, Los Angeles 

Los Angeles, California 

ANDREA FARBMAN, PH.D. 

Director of Public Affairs 

National Council on the Handicapped 

Washington, D.C. 

JUANITA W. FLEMING, PH.D. 

Associate Vice-Chancellor 

Academic Affairs, Medical Center 

University of Kentucky 

Lexington, Kentucky 

MARCIA F. HILL 

Assistant Director of Developmental Services Florida 

Department of Health and Rehabilitative Services 

Tallahassee, Florida 

DR. SIRKKU "SKY" HILTUNEN 

The Art and Drama Therapy Institute, Inc. 

Washington, D.C. 

PAUL HIPPOLITUS 

Director 

The President's Committee on Employment of People 

with Disabilities (Formerly: The President's Committee 

on Employment of the Handicapped) 

and 

Ex-Officio Member 

President's Committee on Mental Retardation 

Washington, D.C. 

MARGARET A. HOVEN, M.A. 

Executive Director Life Skills 

Center 

Washington, D.C. 

GAIL D. JACOB 

Program Director 

Options in Community Living, Inc. 

Madison, Wisconsin 

287 
MATTHEW P. JANICKI, PH.D. 

Director for Aging Services 

New York State Office of Mental Retardation and 

Developmental Disabilities 

Albany, New York 

KENNETH McGILL 

Acting Director, External Affairs 

Office of Governmental Affairs Department of 

Health and Human Services Social Security 

Administration 

Baltimore, Maryland 

ARLENE S. KANTER 

Staff Attorney 

Mental Health Law Project 

Washington, D.C. 

WILLIAM E. KIERNAN, PH.D. 

Director of Rehabilitation 

The Children's Hospital 

Boston, Massachusetts 

EMILY PERL KINGSLEY 

Writer, Sesame Street (PBS) 

Chappaqua, New York 

VIVIAN B. LEVIN 

Executive Director 

President's Committee on Mental 

Retardation 

Washington, D.C. 

DONALD IAN MACDONALD, M.D. 

Special Assistant to President Reagan and Director, 

Drug Abuse Policy Office 

Washington, D.C. 

PAUL A. MARCHAND 

Director, 

Office for Governmental Affairs Association for 

Retarded Citizens/U.S. 

Washington, D.C. 

PAUL L MEDLIN 

Senior Vice President, Corporate 

Development 

Charter Management Group, Ltd. 

Elmhurst, Illinois 

MICHAEL M. MORRIS 

Associate Executive Director 

Community Services Division 

United Cerebral Palsy Association, Inc. 

Washington, D.C. 

BRUCE M. OKA Co-Chairperson MUNI Elderly 

and Handicapped Advisory Committee 

San Francisco, California 

SYDNEY OLSON 

Assistant Secretary for 

Human Development Services Department of 

Health and Human Services 

Washington, D.C. 

MURIEL W. O'TUEL, PH.D. 

Assistant to the Superintendent 

Horry County School District 

Conway, South Carolina 

C. KAYE PEARCE 

Associate Director, Programs Commission 

and Accreditation of Rehabilitation Facilities 

Tucson, Arizona 

VINCENT D.PE'TTINELLI, ACSW, FAAMR 

President, VOCA Corporation 

Columbus, Ohio 

WILLIAM E.PITTMAN, M.A., M.ED. 

ADD Employment Initiative 

Department of Health and Human Services Office of 

Human Development Services Administration on 

Development Disabilities 

Washington D.C. 

JEAN W. POWERS 

Administrator 

Peppermint Ridge 

Corona, California 

AARON J. PRERO, PH.D. 

Economist 

Department of Health and Human Services Social 

Security Administration 

Baltimore, Maryland 

MARY RICHARDSON, PH.D. 

Administrator, Clinical Training Unit 

Child Development and Mental Retardation 

Center 

University of Washington 

Seattle, Washington 

PETER "SKIP" SAJEVIC 

Vice President for Policy National Association of 

Private Residential 

Facilities for the Mentally Retarded 

St. Paul, Minnesota 

JANICE C. SCHIFF 

Director 

Residential Development, Fairfax-Falls Church 

Community Services Board 

Vienna, Virginia 

STUART J. SCHLEIEN, PH.D. 

Associate Professor 

School of Physical Education and Recreation 

University of Minnesota-Twin Cities 

Minneapolis, Minnesota 

KENNETH J. SHAW 

Director 

Rehabilitation and Research 

Goodwill Industries of America, Inc. 

Bethesda, Maryland 

TERESA SMITH 

Michigan NW Area - ARC 

Garden City, Michigan 

ANN P. TURNBULL, ED.D. 

Public Policy Fellow in Mental Retardation 

Joseph P. Kennedy, Jr. Foundation 

Washington, D.C. 

288 
RACHEL D. WARREN 

Director 

National Resource Center on 

Family Based Services 

The University of Iowa 

School of Social Work 

Oakdale, Iowa 

GREGORY P. WEIGLE 

President 

Alliance of Genetics Support Groups 

Herndon, Virginia 

COLLEFEN WIECK, PH.D. 

Executive Director 

Minnesota Governor's Planning Council on 

Developmental Disabilities 

St. Paul, Minnesota 

PHILIP R. ZIRING, M.D. 

Chairman, Department of Pediatrics 

Pacific Presbyterian Medical Center 

San Francisco, California 

289 

*U.S.GOVERNMENT PRINTING OFFICE: 1989-219-469/00969