U.S. Department of Health and Human Services 

Administration for Children and Families 

President's Committee on Mental Retardation 

 

A Better Place: 

The Contribution of Americans with Mental 

Retardation to our Nation's Workforce 

1998 Report to the President 

cover design by Richard Swartz

text graphics by Kate Billings

photographs provided by:

Rock Creek Foundation Silver Spring, MD

Fairfax Opportunities Unlimited Inc. Alexandria, VA

 
PRESIDENT'S COMMITTEE ON MENTAL RETARDATION 

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES 

Administration for Children and Families 

Washington, D.C. 20201-0000 

September 30, 1998

The President 

The White House 

Washington, D.C. 20500 

Dear Mr. President: 

On behalf of the President's Committee on Mental Retardation (PCMR) we are pleased 

to offer you the 1998 Report to the President: A Better Place: The Contribution of

Americans with Mental Retardation to our Nation's Workforce.

This report is the result of the Committee's continuing effort to bring together a broad 

representation of stakeholders to carve out a path for future services and supports for 

people with mental retardation. This Report includes specific recommendations from the 

PCMR Employment Summit: Designing Change which addresses significant barriers to 

the achievement of the goal of a real job in ones community with an opportunity to grow 

and maximize ones potential. In addition, PCMR is delighted to report the continued 

success of the PCMR Next Generation Leadership Symposium and the fourth annual 

PCMR National Collaborative Academy on Mental Retardation. 

PCMR wants to extend a sincere thank you to the report writer, John Kregel, Ed.D., 

Virginia Commonwealth University, whose passion in life is to create employment 

opportunities for people with disabilities. He has effectively brought together the 

collective thoughts and recommendations from the diverse gathering at the PCMR 

National Employment Summit into a document that is true to the PCMR mission and 

tradition of establishing a road map for the future in the field of mental retardation. 

A special thanks to Yolande Bestgen, PCMR Director of Special Projects, who brought

together the cross section of participants for the PCMR National Employment Summit 

who served as the catalyst for significant and targeted discussions on employment. We 

also want to recognize Richard Swartz for the cover design and Kate Billings for her 

work on the text graphics. 

It is the energy of all of the people gathered at each of these nationally recognized events 

that continues the spirit of this President's Committee for lifelong inclusion for people 

with mental retardation 

Valerie J. Bradley Gary H. Blumenthal 

Chair Executive Director
PCMR Report Page 1

INTRODUCTION 

The mission of the President's Committee on Mental Retardation 

(PCMR) is to act in an advisory capacity to the President and to the Secretary 

of Health and Human Services on matters relating to policy and programs 

affecting services and supports for people with mental retardation. 

Approximately one in ten families are directly affected by a person with 

mental retardation at some point in their lifetime. Many more are involved as 

neighbors, classmates, co-workers and friends. 

The President's Committee on Mental Retardation was formally 

established by Executive Order in 1966 by President Lyndon B. Johnson and 

directed to focus on issues related to mental retardation and to guide Federal 

policy to address this critical concern of so many American citizens. 

Since 1993 PCMR has, with renewed energy, effectively impacted 

disability policy within States/Territories, and Native American Tribes; 

established a movement for future leaders in the field; and set the stage for 

employment services and supports for the future. The PCMR publications 

are utilized as texts in Universities, training tools for direct service 

professionals and serve as innovative guides by policy-makers. 

Real outcomes for real people. This is the ultimate goal of lifelong inclusion. 

This is the challenge to the field of mental retardation into the next millennium.

Through the collaborative support of Federal agency partners, PCMR held 

three national events in 1998. The PCMR National Employment Summit was 

co-sponsored by The Social Security Administration; the Next Generation 

Leadership Symposium and the National Collaborative Academy on Mental 

Retardation were co-sponsored by the Office of Special Education and 

Rehabilitative Services, The Social Security Administration, Administration 

on Developmental Disabilities, Administration on Native Americans, and the 

National Institute on Child Health and Human Development. 
PCMR Report Page 2

NEXT GENERATION LEADERSHIP SYMPOSIUM 

The President's Committee on Mental Retardation convened its third 

annual Next Generation Leadership Symposium. The 1998 Symposium 

attracted nearly 300 participants, representing 40 States and the District of 

Columbia. This Symposium provides a forum for young leaders to interact with 

peers, discuss and to develop recommendations concerning service trends, 

supports, and advocacy for people with mental retardation. The ultimate goal 

is to train and retain young leaders who exemplify the highest ideals and 

standards of public service in the field of mental retardation. The culmination of 

this 1998 Symposium will be a special report with recommendations 

presented to PCMR. 

Three leaders were recognized during this event as recipients of the 

Elizabeth Monroe Boggs Award for Young Leadership. The following were 

presented this prestigious national award in recognition of their valued and 

outstanding leadership: 

Joseph P. Meadours, Northport, Alabama is past president of People First of 

Broken Arrow (OK) and People First of Oklahoma. As a consultant to the 

University of Oklahoma, Mr. Meadours served as a teacher's aide and helped train 

individuals to serve effectively as a job coach for persons with mental retardation. 

His current position is Co-Director of the Celebration of Community Living 

Program in Alabama, which is jointly sponsored by the Civitan Research Center 

and the University of Alabama at Birmingham. The purpose of this program is to 

identify and recognize individuals with mental retardation who are residing 

successfully within the community so they may serve as role models for others. 

Rocky Nichols, Topeka, Kansas, has served in the Kansas House of 

Representatives for six years. Representative Nichols serves on the powerful 

Appropriations Committee and is one of the strongest supporters in the 

Kansas Legislature for community services for people with disabilities. He
PCMR Report Page 3

was a key player in the passage of the Kansas landmark disability rights 

legislation, the Developmental Disabilities Reform Act. This Act, passed in 

1995, assures that the choice of Kansans with disabilities are honored when 

they seek community services and guarantees that people with disabilities are 

treated with respect and honor. He is a strong advocate for People First and 

works hard to educate his colleagues on both sides of the aisle and in both 

chambers with regard to legislation that is important to ensure that people with 

disabilities have access to the lifestyles they choose. 

Liz Obermayer, Boston, Massachusetts, holds the distinction of being the first 

self-advocate to work for a State Office of Mental Retardation as a SelfAdvocacy Specialist. In this role, Ms. Obermayer does public speaking about 

self-advocacy and important issues in the lives of people with disabilities, 

serves as a member of the quality enhancement Service Tool Team and 

provides training and mentoring to self-advocates and other groups. One of 

her many leadership skills is her effectiveness as a communicator. As a 

plenary speaker at the 1998 American Association on Mental Retardation 

(AAMR) meeting, Ms. Obermayer delivered an impassioned presentation 

about inclusion and the importance of full participation of self-advocates in 

the work of AAMR. Ms. Obermayer is a Trustee of the Howe Library and an 

articulate communicator to a wide variety of audiences. 

NATIONAL COLLABORATIVE ACADEMY 

The fourth annual PCMR Academy brought together teams from five 

States including Minnesota, New Jersey, New Mexico, South Carolina and 

Virginia, The Hopi Tribe and the Territory of Puerto Rico. For four intense 

days Teams were educated on cutting edge service and support systems and 

innovative policy initiatives. These teams included: Governor's 

Representatives, State Legislators, Tribal Council leaders, State Budget 

Directors, Medicaid Directors, people with mental retardation, family 

members, business leaders, Commissioners of MR/DD, Education, Health and 

Vocational Rehabilitation, service providers and representatives from key 
PCMR Report Page 4

organizations including Developmental Disability Councils and Protection 

and Advocacy. 

This working retreat supported each Team's efforts in designing an 

action plan specific to the unique needs of citizens with mental retardation of 

the participating States, Tribe and Territory. Each plan carried the basic 

values and principles of lifelong community inclusion for people with mental 

retardation. The long-term value of this continued project is reflected in the 

significant impact the PCMR Academy has had on issues of institutional 

closure, inclusive education, family and individual supports and reduction of 

community waiting lists. 

EMPLOYMENT SUMMIT: DESIGNING CHANGE 

In January of 1998 PCMR held the by-invitation-only, National 

Employment Summit: Designing Change. This unique Summit brought 

together a cross section of individuals from across the Nation to participate as 

members of Design Teams to identify best practice services and Federal 

policy recommendations resulting in community employment for people with 

mental retardation. Design Team members included employers, people with 

mental retardation, family members, researchers, service providers, advocates 

and State and Federal policy-makers. PCMR identified concerns of high 

unemployment and limited job opportunities within the community for people 

with mental retardation and challenged the 75 participants to design a future 

that removed barriers and created opportunities for employment. The 

outcomes and recommendations are reflected as the body of this 1998 Report 

to the President. A Better Place: The Contribution of Americans with 

Mental Retardation to our Nation's Workforce 
PCMR Report Page 5

A Better Place: The Contribution of Americans with 

Mental Retardation to our Nation's Workforce 

A BETTER PLACE 

Jessica T is a 29-year-old woman who lives in a southern State. 

Jessica was born with Down syndrome and medical complications that 

threatened her life at the time of her birth. Jessica's parents were told that, 

because of her medical problems, she would not live to be five or six years 

old They were told that she would be "better off' in an institution—better for 

Jessica and better for her family – but they ignored this advice and Jessica 

started attending school at the age of six. 

While in school, Jessica was labeled as having "multiple disabilities". 

She spent her school years in segregated classrooms for students with mental

retardation. She was able, however, to attend both an elementary school and,

later, a high school very close to her home—the same school her brothers and

sisters attended 

Jessica graduated from high school in 1992. Through assistance 

provided by a local supported employment program and with the help of one 

of her neighbors, she found a job as an aide in a local child-care center. She 

has been working there ever since. She has many job duties, including 

preparing snacks, feeding children, taking the three and four year olds to the 

restroom, doing laundry, supervising children as their parents drop them off 

and pick them up at the beginning and end of each day and assisting during 

field trips and other special activities. 

When Jessica first started her job, the parents of four children who 

attended the day care center expressed concern to the Director. They had 

reservations about Jessica serving as an employee. They indicated a concern 

about the "welfare" of their sons and daughters, knowing that Jessica would 

be supervising them, feeding them, and helping them to go to the restroom on 

a daily basis. However, after six years in her job, Jessica has more than 

demonstrated her ability to do the job and for some time has earned the 

reputation of being the most popular staff member working at the center. 

Parents often ask her to babysit for them on weekends when she is not 

working. At holidays and on her birthday, she receives more gifts and 

recognition than any other staff member does. When she is not at work, 

regardless of the reason, people ask about Jessica—where she is and how she 

is doing. 
PCMR Report Page 6

* adapted from "Closing the Shop" by Stephen T. Murphy & Patricia M. Rogan, 1995 

Jessica's supervisor describes her as a valuable employee, one who is 

experienced, reliable, trustworthy and well liked by her coworkers and 

customers. When asked about the contribution Jessica makes to the center, 

her supervisor says, "That's easy. Our center is a better place in every way 

because Jessica works here. It's better for everyone—for the employees, for 

the director, for the children, and for the children's Barents. It's a better place 

to send your children and a better place to work." 

The sentiments expressed by the director of the childcare center reflect 

the experience of many employers. Incorporating individuals with mental 

retardation into America's workforce has nothing to do with charity or 

altruism. It is not about what work can do for the lives of people with mental 

retardation. It is about the contribution that workers with mental retardation 

can make to each and every workplace. Employees with mental retardation 

bring skills, abilities, and positive personal qualities to their jobs. The childcare center is a better place because Jessica is there. All businesses and 

companies can benefit from the participation of individuals with mental 

retardation. 

ACHIEVEMENTS 

Just a few short years ago, individuals with mental retardation faced 

tremendous obstacles when they attempted to obtain employment in their local 

communities. Traditionally viewed as incapable of economic self-sufficiency 

and unable to contribute to their communities, these individuals were often 

likely to earn token wages performing menial tasks in work activity or adult 

activity centers. Today, however, hundreds of thousands of individuals with 

mental retardation are able to earn significant wages in integrated community 

settings. The success of these individuals has been helped by the changing 

attitudes on the part of our nation's employers, the development of new 

service technologies such as supported employment, and initial efforts to 
PCMR Report Page 7

restructure our nation's service delivery system for individuals with mental 

retardation. 

Employers as Partners 

For many years, the negative attitudes held by business and industry 

were viewed as an obstacle to the employment of individuals with disabilities. 

Today, however, significant progress has been made and many employers are 

developing innovative strategies to recruit, train and retain individuals with 

mental retardation as members of their workforce. Employers currently face 

growing labor needs, changing workforce demographics and evolving 

business models. They are recognizing the value of their employees and are 

investing their resources to develop skilled, highly productive workers who 

can enhance the competitiveness of the business. 

Across the nation, large and small businesses are developing new and 

exciting strategies for incorporating individuals with mental retardation as key 

components of their workforce. In many communities, employers are leading 

the way with new solutions to long-term problems by actively recruiting 

workers with mental retardation, featuring them in their marketing and 

promotional materials, finding unique ways to provide necessary work place 

accommodations and insuring that they are able to advance within their 

careers as their skills and experience increase. A number of new employerdriven strategies have been developed. 

 Employer-Based Support Programs—Employers are incorporating 

supports for individuals with mental retardation into their human resource 

and disability management functions. In a growing number of businesses, 

human resource staffs coordinate orientation, training and ongoing support 

functions that will enable individuals with mental retardation, and other 

employees with special needs, to make an ongoing contribution to the 

company. 
PCMR Report Page 8

 Mentorship Programs—A number of businesses have had dramatic 

success designing and implementing mentorship programs, in which a 

worker with mental retardation is paired with a coworker who has 

expressed an interest in serving as a mentor. The mentor assists in the 

initial training of the worker and provides support as needed throughout the 

course of the worker's employment. 

 Partnerships with Employment Service Providers—In a number of 

communities across the country, employers are working closely with 

employment service agencies for individuals with mental retardation to 

devise and implement cooperative employment programs. Employers are 

generally responsible for providing jobs, conducting initial training, and 

providing necessary accommodations. The employment service agency is 

responsible for identifying qualified applicants and assisting in the 

development of accommodations as necessary. 

Through these activities, employers have learned much about the skills and 

abilities of workers with mental retardation. As hundreds of thousands of qualified 

workers have shown, individuals with mental retardation make highly effective 

employees. The characteristics valued most by employers—reliability, 

dependability, getting along with coworkers, loyalty to the company, respect for 

authority—are the factors used most often by employers to describe workers with 

mental retardation. Those factors that truly "handicap" an individual in terms of their 

value to an employer—insubordination, unwillingness to work as a member of a 

team, lack of dependability, substance abuse problems—are the characteristics that 

employers least frequently ascribe to workers with mental retardation. In today's 

highly competitive business environment, employers would be shortsighted to 

overlook this potentially untapped human resource. 
PCMR Report Page 9

Supported Employment 

Supported employment began as a philosophical commitment to 

improve employment opportunities for individuals with mental retardation and 

provide an alternative to segregated service settings such as workshops and 

activity centers. It is now a major national initiative with its own technology, 

enabling legislation and steady funding stream. 

Supported employment provides ongoing support to individuals with 

mental retardation, previously excluded from meaningful employment 

opportunities, to enable them to succeed in paid employment in integrated 

work settings. Its success lies in involving the individual with mental 

retardation and his or her family, the employer and coworkers and human 

service providers in a combined effort to enable the individual to pursue a 

self-chosen career. Since its inception as a Federal program in 1985, few 

rehabilitation initiatives have grown at such a remarkable rate. 

 A proven program that works—Over 100,000 Americans with mental 

retardation are working in real jobs through participation in supported 

employment programs, a tenfold increase over the last decade. Supported 

employment services are available in all 50 States through 4,000 local 

provider agencies. 

 A means to economic empowerment—Individuals increase their average 

annual earnings by at least 500% through participation in supported 

employment. Persons with the most significant disabilities experience the 

largest increases. 

 A vehicle to independence— Nearly three-fourths of all supported 

employment participants with mental retardation are Supplemental 

Security Income (SSI) recipients. Almost all of these people experience 
PCMR Report Page 10

reduced dependence on SSI payments after supported employment and 

one in four indicate their personal earnings become their primary source of 

support. It is estimated that supported employment participants pay over 

$150 million each year in Federal, State and local taxes. 

 A continually evolving technology—Supported employment has been in 

existence for a little over a decade, but our service and support 

technologies continue to improve. Customer-driven supported 

employment, natural support strategies, and employer mentoring, job 

carving and other business-based approaches are expanding and improving 

the original job coach model of supported employment., 

 A valuable resource to business—Employees with mental retardation 

enhance employer productivity and corporate competitiveness. Employers 

indicate that workers hired through supported employment programs 

exceed their expectations in productivity, reliability and company loyalty. 

Supported employment makes simple business sense. 

 A cost-effective alternative—In State after State, in both large and small. 

communities, it has been repeatedly demonstrated that supported 

employment is a cost-effective alternative to other day support options for 

persons with mental retardation. The long-term costs of supported 

employment programs are generally 40% to 80% of the costs of adult 

activity centers or sheltered workshops. Communities that have adopted a 

supported employment approach generally find that they are able to serve 

more individuals and achieve improved outcomes for individuals with 

mental retardation. 

Kaposia, Inc., in St. Paul, Minnesota, is a customer-oriented company that 

provides integrated employment services to about 150 adults with disabilities 

and community-based, school-to-work transition services for students with 

severe and multiple disabilities. This was not the case some ten years ago 

when Kaposia, Inc., founded in 1963, was a self-contained, segregated 

program that provided independent living, social and recreational skills 
PCMR Report Page 11

training and subcontract work and work activities to people with disabilities 

considered to be too disabled for sheltered workshops. 

Kaposia's transition was a long and painful process that was initially 

prompted by the public outcry of high taxes targeted for social service 

programs and fueled by the ongoing demands by program participants 

desiring more and meaningful work when they were deemed unemployable by 

employment programs in the community. In recognizing the need for change, 

Kaposia, Inc. developed a new philosophy and created a vision to become a 

provider of employment services and cease being a facility where people 

entered and never left. 

Challenges were many as staff lacked sufficient skills resulting in high 

turnover, lengthy planning with little action, and families and professional 

agencies were reluctant. The commitment remained steady as Kaposia, Inc. 

received systems' change funds, staff were trained, job descriptions were 

changed, individuals with supportive families desiring employment were 

placed into jobs as receptive professional agency staff were identified and 

utilized. Collaborative efforts were established through the development of 

relationships with the Department of Rehabilitative Services and the business 

community. Program evaluation activities indicated high satisfaction with 

services and slowly the conversion process continued via example of one 

successful placement after another. Barriers continued, foremost, the 

attitudes of in-house staff in the facility-based work activity program who 

could not accept the changes that were occurring and often had to make 

career-altering decisions. Eventually, Kaposia, Inc. stopped accepting 

referrals to the in-house segregated program and as the last person was 

placed into employment, the conversion was complete.* 

The national supported employment initiative has changed forever our 

Nation's view of the employment potential and productive capacity of 

individuals with mental retardation. Negative attitudes and stereotyped beliefs 

of employers have begun to erode as individuals have repeatedly proven their 

ability to contribute to business productivity. The program increases consumer 

earnings, costs less than other alternatives, and reduces individuals' 

dependence on disability benefits. Most importantly, it has enabled thousands 

of people to participate more fully in their communities, take pride in their 

accomplishments, and view themselves as productive individuals. As a 

supported employee in a hospital supply room explained, "Why do I come to 

*adapted from "Closing the Shop" by Stephen T. Murphy & Patricia M. Rogan, 1995 
PCMR Report Page 12

work every day? ... People here need help. They're sick. They would miss 

me if I weren't here. I would worry about them." 

Restructuring our Service System 

Nearly 5,000 local community agencies provide vocational services 

and employment supports to individuals with mental retardation in the United 

States. Of these, over 3,000 assist individuals in finding jobs within the 

businesses and industries in their local communities. Slowly, but steadily, our 

nation's traditional network of sheltered workshops and work activities 

centers are changing in response to the new realities of consumer 

empowerment and a preference for integrated, community-based service 

delivery. Hundreds of new community employment agencies have arisen that 

provide only integrated employment services. Thousands of existing programs 

have expanded their service programs to respond to the new paradigms. The 

rate of change must significantly increase in the future to keep pace with 

rising demand for supported employment and other integrated employment 

alternatives. However, our national network of community service agencies 

has changed substantially over the past two decades. 

 As recently as 1986, only 300 programs across the country provided 

supported employment or other integrated employment services. Today, 

over 4,000 agencies provide supported employment to individuals with 

mental retardation and the figure continues to grow steadily. 

 Today over 20% of all adults with mental retardation receiving vocational 

services do so in integrated community settings, up from less than 5% 

only a decade ago. 

 In nearly every State in the country, local agencies are significantly 

downsizing or eliminating their traditional sheltered employment 
PCMR Report Page 13

* adapted from "Closing the Shop" by Stephen T. Murphy & Patricia M. Rogan, 1995 

programs and converting these programs to community integrated 

employment. 

 Local community employment agencies serving individuals with mental 

retardation are redefining the agency mission, developing new partnerships and 

relationships with business, and incorporating business practices into their service 

organization and operations. 

Avatrac, located in Denver, Colorado, was a thriving sheltered workshop 

planning to expand its operation serving 248 people with mental 

retardation in 1985. While exploring other sheltered workshops and 

learning about supported employment, Avatrac staff recognized that their 

mission ultimately, through the continuum of services, offered, was to 

place people into jobs in the community. Hiring a consultant to look at their 

operation led them to the commitment to convert the workshop into a supported 

employment program to place people directly into jobs instead of progressing 

through the costly continuum. 

Funding became their biggest obstacle as the Division of Developmental 

Disabilities (DDD) funds received per person was ceased when each 

person entered the community. After negotiation, Avatrac was able to 

creatively arrange with the DDD to fund their activities. When the 

funding was no longer available, Avatrac turned to the Division of 

Vocational Rehabilitation where they were able to receive additional funds 

and continue support for their new employment services. 

Additional barriers to the conversion efforts included staff reluctance to the 

change due to their limited knowledge and training, lack of interest of 

participants in leaving the workshop, skeptical families and resistance of other 

professionals, especially residential service coordinators. Training was 

provided to Avatrac staff and they adopted a successful team approach. 

Participants were not forced to leave the workshop but were offered group 

options such as enclaves to make a slow transition to community 

employment. The positive experience of others placed in individual jobs 

provided encouragement to others. Most parents were supportive of the 

efforts being made and were eager for their sons and daughters to be placed 

in employment. Today, Avatrac continues the conversion effort and provides 

services for about 300 people with almost 200 of them placed in community 

jobs. **
PCMR Report Page 14

The advances and accomplishments of the recent past have been quite 

remarkable. Individuals with mental retardation have demonstrated their value 

as productive members of the nation's workforce. Our schools are improving 

their ability to prepare adolescents with mental retardation for meaningful and 

rewarding lives in which employment is an expectation, not a dream. 

Supported employment and other new service technologies have allowed 

hundreds of thousands of individuals previously viewed as unemployable to 

obtain and maintain satisfying employment in jobs they chose themselves. 

Raised expectations have resulted in dramatic changes in the ways in 

which States and localities organize and deliver employment services. It 

would be a tremendous mistake to believe that all that needs to be done has 

been achieved. We have only begun to fulfill the responsibilities we have and 

the commitments we've made with our citizens with mental retardation. We 

now have a unique opportunity to build upon the foundation we have laid and 

finish the task we have started. 

FORCES FOR CHANGE 

Kit is a 19 year old high school student with severe mental retardation 

and autism who lives with her family. Although she has limited expressive 

language she communicates through her body language and willingness to 

participate in activities. Kit is dependent on others for her personal and daily 

living needs. 

Kit is enrolled in a self-contained class at a high school. She 

participates in a community-based vocational education program that 

provides supported employment services. She has held a part-time job at a 

restaurant as a food prep worker for more than a year. Her job duties include 

breading ravioli, eggplant and zucchini sticks and panning loaves of bread for 

baking. She assists her co-workers with the daily general clean up by taking 

all dirty pans to the sink area. She works approximately 18 hours a week as 

part of her school curriculum and earns $5.00 an hour. Transportation is 

provided to and from work by the school during the week and her parents on 

the weekends. 
PCMR Report Page 15

*

excerpt from 'Spotlight on Work Support', Virginia Commonwealth University 

Rehabilitation Research and Training Center, 1998 

Kit's daily needs while at work are supported by her co-workers, 

managers, and her job coach. She receives their assistance in taking off and 

putting on her coat; placing and retrieving items from her locker; clocking in and 

out; putting on and taking off her hair net, apron, and gloves; washing her 

hands; replenishing her work supplies and going on break. Technological assistance 

is also incorporated into her routine. As an example, the manager ordered a 

magnetic scanning card, which eliminated the need to manually enter her 

employee number into a computer for clocking in and out. An audio 

prompting/praising system was developed to provide her consistent 

intervention and decrease her dependence on others for feedback on her work 

performance. 

Kit, will soon move from school into adult life in her community with job 

experience in place and a resume reflecting real work in her hand.* 

Now, more than at any other time in our Nation's history, people with 

mental retardation are actively participating in the economic life of their 

communities. Over the past quarter century, Federal and State legislative 

initiatives, advances in rehabilitation and assistive technology, and changes in 

societal attitudes have combined to revolutionize our Nation's view of the 

employment potential of citizens with mental retardation. No longer are they 

viewed as an economic burden to their families and the economy. 

In 1998, workers with mental retardation are proving themselves each 

day to be productive workers and outstanding employees. As we approach the 

turn of the century, our economy is stronger, our companies are more 

competitive, and our communities are richer because people with mental 

retardation are increasingly integrated into our nation's work force. 

Despite the undeniable progress of the past 25 years, many problems 

remain. The majority of adults with mental retardation continue to be 

excluded from the nation's work force, unable to obtain or maintain 

employment. Yet, at this time in our history, we have a chance to 

dramatically improve the employment opportunities of Americans with mental 

retardation. Various political, economic and social forces are currently 
PCMR Report Page 16

combining to create a unique opportunity that we should not disregard. We 

must expand upon those principles we know to be successful and summon the 

courage and resources necessary to solve the problems we have too long 

ignored. 

Presidential Leadership 

"The Americans with Disabilities Act of 1990 is making it possible for 

millions of Americans to participate more fully in society — through 

employment, access to public facilities, and participation in community and 

leisure activities — and to do their part to make us a stronger and better 

country. At the same time, we are reminded that significant challenges 

remain. Far too many of the 30 million working-age adults with disabilities 

are still unemployed, especially those with significant disabilities." 

- President Bill Clinton 

The recently established Presidential Task Force on the Employment 

of Adults with Disabilities can serve as the catalyst for the next wave of 

reform and improvement. The Task Force's primary areas of focus—lack of 

consumer-driven supports and services, economic incentives to work, 

elimination of employment discrimination, availability of work place 

accommodations, and inadequate access to needed health care, transportation, 

housing, and other supports—are the very issues faced by individuals 

attempting to enter employment. The challenges faced by the Task Force are 

difficult, but their successful solution can improve employment opportunities 

for persons with mental retardation for many years. 

Consumer Control and Empowerment 

During the decade of the 1990s, the concept of consumer 

empowerment has become the central value guiding the development of 

employment policy for individuals with mental retardation. Recent Federal 

legislation has reflected a clear commitment toward enabling individuals to 

plan and pursue their own careers. High school students are leading their own 

transition planning meetings, establishing employment goals and planning for 
PCMR Report Page 17

their lives after graduation. The consumer choice provisions of the 1992 

Rehabilitation Act Amendments are designed to allow consumers to choose 

their own jobs, identify the services and supports they need, and select the 

person or organization that will best meet their needs. Future reforms being 

seriously considered include increased use of vouchers, "Ticket to Work" 

programs, and other alternatives that will allow persons with mental 

retardation and their families to truly select the services and supports they 

need. 

Social Security Reform 

Current efforts to reform Supplemental Security Income (SSI) and 

Social Security Disability Insurance (SSDI) recognize that many of the 

programs designed to support persons with mental retardation actually hinder 

their chances for employment. The Social Security Administration's 

Employment Strategy emphasizes consumer control of services. It recognizes 

that work must result in increased earnings and improved economic status. It 

further acknowledges the need for access to stable and affordable health care. 

Most importantly, it is based on the belief that our benefit programs should 

be a foundation that many individuals can use to achieve independence and 

pursue their self-chosen careers. People who feel that they can work and 

desire employment should not be denied access to the services and supports 

they need to achieve their goals. 

A New Relationship With Employers 

As more and more individuals have entered the workforce, employers 

are becoming increasingly aware of the tremendous contribution individuals 

with mental retardation can make to the success and productivity of both large 

and small businesses. While discrimination and negative stereotypes remain a 

significant problem, examples abound of employers who have developed 

innovative approaches to promoting workforce diversity. These employers are
PCMR Report Page 18

aggressively recruiting employees with mental retardation, featuring them in 

efforts to market their products and services, and making available necessary 

accommodations to guarantee long-term employment success and career 

advancement. Employers have developed a number of new strategies to hire, 

train, and retain employees with mental retardation, including employee 

mentoring and job coaching, job sharing and job carving approaches, formal 

arrangements with local service providing agencies, and enhanced disability 

management and employee assistance programs. 

The Changing Nature of the American Work Force 

"Home-based employment and other forms of workplace flexibility are 

beneficial to many workers, including the disabled From working parents to 

people with disabilities, many people are taking advantage of technology 

advances that allow them to telecommute and still play an active role in filling 

the nation's growing job vacancies.” 

- National Organization on Disability 

Structural changes in our Nation's economy will have a significant 

impact on future employment opportunities. Trends such as corporate 

downsizing, outsourcing, increased reliance on part-time or contract 

employees and telecommuting are altering the relationship between workers 

and their employers. While some fear these trends, current economic changes 

may actually offer important new opportunities for persons with mental 

retardation. Downsizing and outsourcing may allow individuals to develop 

self-employment or entrepreneurial arrangements. Increased use of part-time 

and contract employees may create chances for the development of job 

sharing or job carving options. Telecommuting and other flexible staffing 

arrangements may increase employers' acceptance of the types of reasonable 

accommodations sometimes required by individuals with mental retardation. 

When viewed creatively, current workforce trends can be used to promote, 

rather than hinder, employment of persons with mental retardation. 
PCMR Report Page 19

Technological Advances 

Recent advances in technology have changed the lives of everyone in our 

society. One of the most significant effects of recent improvements is the ease with 

which individuals can gain access to large amounts of information from their 

homes or offices. From cellular telephones to voice activated computers, from 

Internet forums to electronic speech synthesizers, technological advances may hold 

the key to improved independence and productivity for individuals with 

disabilities. Many technological applications hold tremendous promise for 

improving the lives of individuals with mental retardation and providing new 

opportunities for work force participation. This potential will not be realized, 

however, if individuals do not have access to this technology. Special care should 

be taken to insure that individuals with disabilities are included in this information 

revolution. 

THE PARADOX 

"At a time when the U.S. unemployment rate is at an historic low and there is 

a crying need for workers, it is astounding to learn that the employment gap 

remains so wide. Over 72% of people with disabilities out of the workforce 

want to work and contribute to the economy.” 

- Alan A. Reich, President, National Organization on Disability 

In stark contrast to the dramatic successes we have experienced and 

the tremendous opportunities that lie before us, the undeniable reality remains 

that hundreds of thousands of capable, motivated individuals with mental 

retardation continue to be excluded from the workforce. In spite of landmark 

legislation and major efforts to reshape our service delivery system, over twothirds of all adults with mental retardation remain unemployed. The chronic 

unemployment of individuals with mental retardation has concerned the 

President's Committee on Mental Retardation (PCMR) virtually since its 

inception. 
PCMR Report Page 20

In 1967, PCMR estimated that the unemployment of individuals with 

mental retardation resulted in billions of dollars of lost earnings each year. 

In its 1983 Report to the President, PCMR concluded that there were 

hundreds of thousands of people with mental retardation who were 

employable but were unemployed because of misconceptions. 

In 1994, the PCMR publication, Journey of Renewal for All 

Americans, reviewed the decade that had passed since its 1983 report and 

found that "...the contemporary employment status of Americans with mental 

retardation is one of underachievement..." 

The exclusion of individuals with mental retardation from our nation's 

workforce must not be allowed to continue. Failure to incorporate citizens

with mental retardation into the labor force wastes a valuable human resource. 

The cost of dependency in terms of income maintenance programs and other 

public assistance places a tremendous strain on our nation's economy. Even 

greater are the human costs of idleness and dependency on the lives of 

individuals with mental retardation and their families. 

The problems that have made unemployment such a troublesome and 

intractable dilemma are varied and complex. The barriers do not reside within 

a single agency or program. The obstacles cannot be overcome with a simple 

regulatory change, a reiteration of legislative intent, or a new program 

initiative. The root causes of unemployment for individuals with mental 

retardation are attitudinal, economic and political. Their eradication will 

require courage and resolve on the part of individuals, their families, business 

and industry, local communities, and State and Federal governments to 

undertake fundamental reform that addresses problems too long ignored. 
PCMR Report Page 21

Our Policies Must Match Our Beliefs 

"We must AO disability policy in America away from exclusion towards 

inclusion... and our policies away from paternalism to empowerment." 

- Vice President Al Gore 

The amount of Federal funds spent to support individuals with 

disabilities exceeds $200 billion annually and is rising at an alarming rate. 

Yet, most of these monies are used to provide health care and income 

maintenance and support. Only a very small percentage of these funds go 

directly to promote the employment of individuals with disabilities. It is 

estimated that expenditures for employment and vocational rehabilitation 

programs total only about 2% of all disability-related expenditures. While our 

values promote economic independence, in reality our resources are used to 

support long-term dependence on Federal subsidies. 

In many instances the policies and philosophies embodied in various 

programs are conflicting or even contradictory. Significant efforts are made to 

provide job training and placement services through supported employment 

and other rehabilitation and employment programs. At the same time, income 

support programs such as SSI or SSDI are built on a set of policies and 

regulations that can severely penalize persons with mental retardation who 

attempt to leave the program rolls and enter competitive employment. 

Similarly, the Americans with Disabilities Act is built on the principles of 

independence and inclusion. Yet a number of Federal programs, such as 

vocational rehabilitation and Medicaid, provide extensive financial support to 

sheltered employment and day activity programs that maintain individuals in 

segregated environments that have traditionally failed to prepare them for 

competitive employment. 
PCMR Report Page 22

Disincentives in the Benefits System 

Many individuals with mental retardation are able to work and desire 

employment. However, the structure of our disability benefit programs 

threatens many individuals with loss of income supports and health care 

coverage if they attempt to work. Entering the work force should enable 

individuals to increase their earnings while lessening the need for income 

support. No one should be financially penalized for going to work rather than 

remaining on benefits. Sadly, for a large number of individuals, their decision 

to obtain employment doesn't lead to increased personal income. In fact, 

some may actually be worse off after working, if they lose-their cash benefits 

and health care coverage while simultaneously incurring transportation, health 

care, clothing and other expenses. Our policies must promote, not punish, the 

efforts of individuals with mental retardation who desire to leave the disability 

rolls and become contributing members of their communities. 

The Supplemental Security Income and Social Security Disability 

Insurance programs contain a number of work incentive provisions that are 

designed to assist individuals attempting to obtain employment. Similar 

provisions of the Medicare and Medicaid programs attempt to extend health 

care coverage to individuals entering the workforce. However, these current 

work incentive provisions are insufficient, under-utilized, and unnecessarily 

complex. Work incentive programs are often incomprehensible to persons 

with mental retardation and their families. As a result, motivated and 

competent individuals often elect to remain removed from the workforce, 

rather than risk the loss of income supports and health care coverage should 

they attempt to work. 
PCMR Report Page 23

Waiting For Services 

"[Waiting lists are] a problem that is not self-correcting. In most 

States, continuations of the current practices of providing and financing 

services is a recipe for more and more people being kept out of a system that 

is supposed to assist them." - K Charlie Lakin 

Many currently unemployed individuals with mental retardation desire 

employment and are eager to begin a satisfying, self-chosen career. Yet they 

are unable to gain access to the services and supports they need to be 

successful. In many communities, waiting lists for employment services 

extend for many months or several years. Our current service delivery system 

simply does not have the capacity to meet the needs of all individuals eligible 

for and desiring services. 

It is estimated that between 75,000 and 100,000 citizens with mental 

retardation are currently on waiting lists for vocational or employment 

programs. Most troubling is the fact that even as service capacity expands in 

individual States the demand for services also increases. In many States, 

waiting lists for employment services will remain or expand for the 

foreseeable future. As waiting lists grow, the hopes and expectations of 

individuals wane and the burden on aging caregivers increases. 

The effects of waiting lists on adolescents and young adults exiting 

secondary special education programs are of particular concern. Students 

leaving school only to face years of waiting before receiving employment 

services may lose the skills and abilities they have acquired. Their self-esteem 

and ability to lead a normal lifestyle may be jeopardized. Effective transition 

from school to adult life must not mean transition to the frustration and 

hopelessness of years spent on a waiting list. Young adults with mental 

retardation must have access to the system that is designed to help them. A 

number of States have recently begun initiatives to reduce and eliminate 

waiting lists. While some States are contemplating additional appropriations 
PCMR Report Page 24

for their adult service system, many States are looking at the fairness of 

current funding practices. Those programs and practices that are viewed as 

costly or that do not contribute to individuals' independence and productivity 

must be critically examined. The limited resources available to fund adult 

employment services will require that we find the moral and political courage 

necessary to reduce or eliminate current services that do not meet the tests of 

effectiveness and cost-efficiency. To fail to do so will only exacerbate a 

problem that is disturbing now and will continue to plague us for the 

indefinite future. 

When All Doesn't Mean All 

Many of the major Federal programs designed to promote the employment 

opportunities of all Americans have effectively excluded individuals with mental 

retardation from their services and activities. Few students with disabilities 

participate in programs funded through the School-to-Work Opportunities Act. 

Youth employment programs funded through the Department of Labor (DOL) 

have consistently failed to serve people with mental retardation. Concerns have 

also been expressed that the DOL One Step Career Center programs are not being 

implemented in a way that will enable them to meet the comprehensive needs of 

persons with mental retardation. 

The President has directed the National Task Force on Employment of 

Adults with Disabilities to find ways to assure that the welfare to work 

provisions of the Personal Responsibility and Work Opportunity 

Reconciliation Act are implemented in a way that does not discriminate 

against persons with mental retardation and other disabilities. 

The mandate and intent of each of these programs expressly 

encompasses the participation of individuals with disabilities, including 

persons with mental retardation. Yet, as one individual remarked after 

attempting to gain access to services through a One Stop Career Center, 
PCMR Report Page 25

"Receiving an invitation doesn't do you any good if there's nothing to do and 

you don't feel welcome when you get there. You're not sure you belong." 

Making Programs Accountable 

Far too often, individuals with mental retardation and their families 

view local Vocational Rehabilitation and Social Security offices as 

inaccessible and unaccountable. Instead of being perceived as responsive 

public programs that go the extra mile to make certain that consumers receive 

the services to which they are entitled, local agencies are often viewed as 

"gatekeepers" responsible for denying individuals access to critically needed 

supports. Individuals with mental retardation and their families consistently 

report that their employment potential is underestimated by the local 

vocational rehabilitation agencies. They believe that local counselors often use 

inappropriate and irrelevant evaluation techniques to limit their eligibility for 

services and try to steer individuals into programs and careers that do not 

reflect their personal preferences and desires. Similar feelings are frequently 

reported about services provided in local Social Security offices. Local offices 

are frequently found to be inaccessible to individuals with physical disabilities 

or special needs. 

From the perspective of individuals with mental retardation, rules and 

procedures seem so complex and detailed that even the SSA office staff members 

are unable to clearly explain them or are unaware of specific provisions. New 

programs and initiatives have been added to both the Vocational Rehabilitation 

and Social Security programs in recent years. Unfortunately, direct service 

personnel often have little or no knowledge of the new program elements, which 

can dramatically hinder implementation of the new programs. For example, 

supported employment began as a specialized program within the Federal/State 

vocational rehabilitation system. Even today, many vocational rehabilitation 

counselors lack sufficient knowledge or commitment to fully implement the 

program in their local communities. Similarly, many of the recently initiated 
PCMR Report Page 26

Social Security Work Incentives, such as Plan for Achieving Self-Support 

(PASS), are poorly understood by caseworkers in local SSA field offices. 

A Segregated System 

Congress has repeatedly expressed a clear preference for integrated 

employment opportunities that allow individuals to fully participate in their 

communities. The accomplishments and success of hundreds of thousands of 

individuals who work in typical jobs in the local workforce is undeniable. Yet, 

employment services for adults with mental retardation remain overwhelmingly 

segregated. At both the Federal and State levels, nearly 90% of all funds 

continue to support segregated vocational services such as activity centers and 

workshops. Our value statements and official policies universally espouse a 

preference for integrated employment, but our actions don't match our words. 

The extent to which adult activity centers and sheltered workshops 

should be converted into programs that assist individuals to work in typical 

jobs in their communities has been a controversial issue in the field of mental 

retardation. Yet no philosophical, economic or political argument has been 

provided that justifies a system in which four to five individuals are served in 

segregated settings for every one person provided the opportunity to work in 

competitive employment. The Nation's service delivery system is 

unnecessarily out of balance. It is becoming increasingly clear that the vast 

majority of individuals with mental retardation and their families, especially 

families of adolescents and young adults, express a strong preference for 

integrated employment opportunities. 

Most families earnestly desire the opportunity for their son or daughter 

to work in a real job, indicating they would be interested in other alternatives 

only when an individual is unable to succeed in an integrated setting with 

proper supports. Furthermore, individuals who have worked in both 

segregated and integrated employment settings invariably prefer integrated 
PCMR Report Page 27

employment. Few individuals who have left sheltered employment for a real job 

ever indicate a desire to return. 

Many obstacles to wide-scale conversion of segregated facilities have been 

identified. For example, inequitable State reimbursement practices often create 

disincentives to conversion of segregated employment settings. Concerns and fears 

on the part of staff members can hamper change efforts. Lack of business acumen on 

the part of human service agencies often makes it difficult to manage large-scale 

organizational change. These obstacles, however, are logistical barriers that can be 

effectively overcome, not sound reasons for retaining the status quo. 

In 1968 in rural Wisconsin, New Horizons, a small day work and

activity center serving individuals with disabilities too severe to perform

sheltered work was established. In 1987, the executive director, influenced by

leaders in the field, arranged a combined staff/board of director's retreat to

conduct a self-evaluation of the center activities. They found that activities 

offered by the center not only mirrored stereotypic thinking in the United

States but perpetuated the belief that people with severe disabilities needed to

be taken care of and lacked any skills to perform meaningful work or lead

productive lives. With this realization, a vision was created, a new mission

statement was developed and the board passed a resolution committing New

Horizons to integrated community programming. 

Even though there was no intent to close the day activity center this action 

was followed by opposition. Staff lacked skills and feared job loss. Parents

were skeptical of employment due to limited expectations of their sons and

daughter. Community agencies and leaders expressed serious concerns about

people with disabilities being in the community. Many center participants

wanted jobs in the community and their enthusiasm was contagious as it

spread to others. Funds were shifted, grants were received and training and

technical assistance came from consultants to address staff concerns.

Reluctant parents were asked to let center staff try while receptive parents

willingly allowed their sons and daughters to be placed into jobs. Community

agencies and leaders were provided education and watched as the center

evolved from a facility program to an affirmative business and later to an

employment program placing every participant into paid jobs, eventually

eliminating the need for a facility. Today, New Horizons provides services for

85 people with severe disabilities in supported work settings. 

* adapted from "Closing the Shop" by Stephen T. Murphy & Patricia M. Rogan, 1995 
PCMR Report Page 28

Ongoing Discrimination 

Employers who have had experience hiring and supervising employees 

with mental retardation invariably feel that the presence of the worker with a 

disability has had a positive impact on their business. They overwhelmingly 

rate the overall work performance of employees with mental retardation quite 

favorably. People with mental retardation have a positive influence on the 

entire workforce. 

The Americans with Disabilities Act (ADA) has done much to 

promote awareness of the abilities of persons with disabilities and end blatant 

discriminatory practices. Unfortunately, employers who have limited or no 

experience working with individuals with mental retardation still possess 

some of the negative stereotypes and attitudes that have been the source of 

discrimination for many years. Some employers still feel that employees with 

mental retardation will be unproductive workers, who will be prone to injuries 

and accidents, ostracized by fellow employees, raise insurance costs, and elicit 

negative reactions from the general public. The experiences of tens of 

thousands of employers over several decades prove these discriminatory 

attitudes are not based on fact. Yet they stubbornly persist in the minds of 

many potential employers. 

PCMR RECOMMENDATIONS 

The problems that frustrate the employment aspirations of Americans 

with mental retardation are complex and deeply entrenched in our beliefs and 

our service delivery system. Attitudinal obstacles endure in the stereotypical 

attitudes held by a minority of employers and service providers. Economic 

barriers still remain in our inability to redirect the resources required to 

provide services and supports to all individuals who desire and are capable of 
PCMR Report Page 29

employment. Political impediments still result in programs that promote 

exclusion and dependence on income supports—policies that don't reflect our 

values or what we know is possible. Fortunately, these problems are not 

intractable. In every instance, solutions are available and within our reach. 

Consumer-Driven Services 

"No bird soars too high, when he soars with his own wings." 

- William Blake 

Enabling individuals to plan and pursue their own careers must 

continue to be the guiding principle of our nation's employment policy for 

persons with disabilities. Federal and State resources should be allocated to 

allow consumers to choose their own jobs, identify the services and supports they 

need, control their own financial resources and select the person or organization 

that will provide the support. 

Consumers must have access to the information and assistance they 

need to make career choices and select employment supports. They should be 

fully aware of the employment assistance and support services available to 

them, the implications of employment on their disability benefits and health 

care status, and strategies for gaining access to services and using work 

incentives. Information on the quality of employment outcomes and consumer 

satisfaction with services should be available to consumers as they choose 

among providers and select appropriate services. 

PCMR recommends: 

 Include a clear legislative commitment toward consumer-driven services 

into all relevant Federal legislation. Any future expansion of Federal or 

State resources should be structured to allow consumer control over 

financial expenditures. 
PCMR Report Page 30

 Create and implement voucher, 'Ticket to Work', or other new programs 

that will allow consumers maximum flexibility to control their financial 

resources, develop their own employment plans, choose providers and 

vendors, direct their job-seeking efforts and pay for outcomes based on 

their satisfaction. 

 Support consumers as they learn to make career choices over time. Make 

benefits counseling available to individuals using vouchers to make 

certain they are fully aware of the ramifications of employment choices on 

their disability and health benefits status. 

Make Work Pay 

"Once or twice every month I review the employment plans of 

individuals who receive SSDI. As horrible as this sounds, I usually advise 

them to make sure that they don't earn over $500 a month—that they don't 

increase the number of hours they work But the SSDI rules would make it 

irresponsible for me to do otherwise” 

- An employment counselor in a Midwestern State 

Consumers who choose to obtain employment and pursue a long-term 

career should be rewarded for their efforts. However, the structure of 

disability benefit programs threatens many individuals with loss of income 

supports if they attempt to work. The financial disincentives in the current 

Social Security disability programs are very real and extremely detrimental to 

persons with mental retardation. Current efforts to enable consumers to keep 

more of what they earn as they make the transition into the workforce should 

be supported and expanded. 

PCMR recommends: 

 Eliminate the current "earnings cliff' in the Social Security disability program 

to allow consumers to attempt to enter the workforce without jeopardizing their 

financial futures. Entering the workforce should enable individuals to increase 

their earnings while lessening the need for income support. 
PCMR Report Page 31

 Redesign the work incentive components of the Social Security benefits 

programs so that they achieve their intended purpose. Work incentives should 

not be so complex that they cannot be relied upon, nor well understood. 

 Allow consumers receiving services through the Home and Community 

Based (HCB) waiver to use more of their earnings to purchase housing, 

food, clothing and lifestyle benefits as they advance in their careers and 

take greater employment risks. 

Maintaining Health Coverage 

"Lack of adequate private health insurance options is a disincentive to 

leave Social Security programs for work. Few private health plans cover the 

personal assistance and other types of services that make work possible for 

many people with disabilities." - President Bill Clinton 

The potential loss of medical benefits or lack of access to adequate 

health insurance is perhaps the greatest single obstacle preventing large 

numbers of individuals from leaving the benefit rolls and entering 

employment. People should not have to choose between obtaining a job and 

maintaining their medical coverage. 

PCMR recommends: 

 Establish Medicare and Medicaid buy-in programs that will provide 

consumers long-term access to required health care. Create employment 

incentives for individuals who do not require income support, but need 

long-term health care to meet their medical needs while working. 

 Create tax incentives that recognize the need of many individuals with 

mental retardation for personal assistance, specialized transportation, 

assistive technology and other special supports. 
PCMR Report Page 32

Make Programs Accountable to Consumers 

Local rehabilitation and employment agencies should be evaluated 

based on the outcomes they generate as opposed to the services they provide. 

Federal and State employment monies should be used to support individuals, not 

programs. A number of reforms should be initiated to increase the 

responsiveness and accountability of local agencies to consumers and 

advocates. 

PCMR recommends: 

 Allow consumers and families to establish a system of independent 

evaluations of local vocational agencies. The evaluation system should be 

focused on employment outcomes and consumer satisfaction, and not 

duplicate existing certification and accreditation efforts. 

 Disseminate objective employment outcome and consumer satisfaction 

information to consumers, family members and advocates in local 

communities. Consumers who are risking their long-term benefits for a 

chance to return to work should have access to independent information on 

the quality of services delivered by potential provider agencies. 

 Modify Federal and State rate setting and reimbursement mechanisms so as 

to compensate providers based on the quality of their outcomes as opposed 

to simply the amount of services they provide. 

Access to Services and Supports 

Waiting Lists—Individuals with mental retardation who desire to work should 

have access to the services and supports necessary to enable them to find and 

maintain employment. Waiting lists that extend for years and cause 

individuals to lose hope can not be tolerated. We should curtail the use of 
PCMR Report Page 33

costly vocational alternatives that generate poor employment outcomes in 

favor of more cost-effective employment options. 

Transportation—Lack of access to necessary support services continues to 

unnecessarily exclude individuals from employment. Many otherwise 

qualified individuals with disabilities currently remain unemployed, not 

because they are unable to perform a job, but rather because a lack of 

transportation prohibits them from getting to and from the employment 

setting. No one should be precluded from working for lack of transportation. 

Assistive Technology—Many individuals with mental retardation can benefit 

tremendously from assistive technology. All individuals who are currently 

employed or seeking employment should have access to all aspects of 

assistive technology, including assessment, device acquisition, training and 

support. Unfortunately, far too many individuals with mental retardation are 

viewed as unable to benefit and therefore are excluded from consideration for 

assistive technology services. 

PCMR recommends: 

 Establish policies in each State and locality that promote, support, and 

share in the costs of reducing and eliminating current and future waiting 

lists for employment services. Establish specific targets to eliminate 

waiting lists for employment services within a reasonable period of time. 

 Develop creative solutions to community-wide transportation problems. 

Encourage employers to develop cost-effective transportation solutions, 

including employer travel consortia, private transportation systems, or 

other strategies. Encourage State or local governments to provide a tax 

credit for employers who underwrite the costs of transportation for 

employees with disabilities. Request local communities to pool funding 

and transportation resources to maximize the cost effectiveness of 

specialized transportation services. 
PCMR Report Page 34

 Continue our current efforts to work collaboratively with computer 

hardware and software manufacturers to insure that current and future 

advances in computer applications are accessible to individuals with 

mental retardation, as well as all other individuals with disabilities. 

 Develop partnerships among public schools, rehabilitation programs, 

businesses and other private entities to establish and operate programs that 

will provide personal computers to individuals with disabilities unable to 

afford them. 

Effective Preparation for Employment 

High school programs for students with mental retardation should be 

based on a series of meaningful experiences and knowledge acquired over a 

number of years. As students make and refine initial career selections, they should 

have access to a succession of meaningful, community-based employment 

experiences, including exploration activities, internships, work experiences, 

mentoring relationships, and employment opportunities. Participation in work 

experience or paid employment while in high school remains the best predictor of 

whether an individual will be successfully employed in adulthood. 

Many students with disabilities will require short-term or ongoing 

supports to succeed in post-secondary educational or employment settings. 

Funding and service arrangements should be in place in communities that allow 

students to obtain needed services and supports upon leaving school. Each local 

school district should attempt to insure that exiting special education students 

make the transition into meaningful post-school employment and educational 

options. 

PCMR recommends: 

 Develop strategies for joint funding of transition initiatives at the Federal level 

that can serve as models for States and localities. Successful transition programs
PCMR Report Page 35

require the active involvement of students, their families, educational personnel, 

employers, and adult service agency representatives. All participants must be 

committed to sharing information, responsibility and resources to insure that all 

necessary components of a local transition program are in place. The key to 

collaborative efforts is sharing of all resources, not just ideas. 

 Ensure that students with mental retardation have continued access to 

community-based instruction, career exploration, vocational training, work 

experience and job placement experiences while in high school. Vocational 

preparation of students with mental retardation is in no way incompatible with 

education reform efforts underway in many States. 

Careers Not Jobs 

Pursuing one's career is a life-long process. Individuals with mental 

retardation should be allowed to explore an array of alternative careers, select 

a career that matches their interests and desires, and obtain the training, work 

experiences and long-term supports necessary to make their goals a reality. 

At the secondary school level, the focus on careers should extend through all" 

phases of the employment process, including assessment, exploration, 

education and training, and gaining access to necessary support services. At 

the adult level, career goals must change from placement into an initial 

employment situation to movement through a progression of jobs directed 

toward the individual's chosen career objective. 

PCMR recommends: 

Focus secondary special education programs on long-term careers and not 

merely entry level employment. Emphasis should be placed on movement 

through a series of positions, all directed toward the individual's career 

objective. 
PCMR Report Page 36

 Provide training for adolescents with mental retardation and opportunities 

to acquire self-determination and self-advocacy skills. Selecting a career 

and directing one's own transition process is a challenging activity for any 

adolescent. Local school district should insure that information and 

training in self-determination and self-advocacy skills is a component of 

the high school curriculum. 

 Modify vocational rehabilitation and other Federal employment policies to 

emphasize long-term job retention, promotion and career advancement, as 

opposed to initial placement into entry-level employment or temporary, 

subsidized employment opportunities. 

Eliminate Segregated Services 

Our adult service system for individuals with mental retardation 

remains extremely out of balance. Individuals served in segregated vocational 

programs outnumber those in integrated employment alternatives by a ratio of 

four or five to one. This imbalance defies stated Federal and State policies that 

identify integrated employment as the preferred service delivery option for 

individuals with mental retardation. It has created inequitable funding 

practices that place severe financial disincentives on local provider agencies 

that wish to convert to integrated employment options. Excessive reliance on 

segregated options has prolonged the use of high-cost employment alternatives 

that effectively limit the number of individuals who can benefit from 

employment programs. 

Congress and the Administration have clearly and unequivocally stated 

their commitment to the expansion of community integrated employment 

alternatives for individuals with disabilities. Existing Federal employment 

programs should be reviewed to insure that current practices are consistent 

with this stated goal. 
PCMR Report Page 37

PCMR recommends: 

 Correct the existing imbalance in Federal expenditures that continue to 

emphasize segregated as opposed to integrated employment alternatives. 

Congress and the Administration should work to insure that Federal 

funds are exclusively used to support community integrated employment 

alternatives. 

 Encourage and promote the efforts of individual States to expand 

community integrated employment opportunities. States should be allowed 

to use Federal funds to stimulate and support conversion of segregated day 

services to community integrated employment. Federal reimbursement 

mechanisms should include clear financial incentives for provision of 

integrated services. 

 Eliminate inequitable reimbursement practices that create disincentives to 

conversion of segregated employment settings. Reimbursement rates 

should provide clear financial incentives for placement into community 

integrated employment settings. 

 Support people, not service agencies. If an individual who is currently 

receiving services in a segregated setting enters a community integrated 

employment option, monies used to support the individual's participation 

in the segregated setting should follow the person into the employment 

setting. If an individual moves from one community to another within a 

State, funding for that person should move with the individual and be 

available to purchase the vocational services he or she chooses in the new 

community. 

 Involve consumers and their families in the decision to convert an existing 

agency, the steps the agency will take to expand community integrated 

employment, the timeline for program expansion, and the evaluation of 
PCMR Report Page 38

program success. Consumers should not have major program changes 

thrust upon them without their full participation. 

Access to Needed Services 

A number of new and exciting initiatives are underway to promote the 

economic independence and increased productivity of all Americans with 

disabilities. At-risk youth, former welfare recipients, Native Americans, and 

numerous other groups have been the targets of economic development and 

employment initiatives. Individuals with mental retardation can benefit 

significantly from participation in these initiatives. Welfare reform, youth 

employment and school-to-work programs are all mandated by law to promote 

the inclusion of individuals with disabilities in all aspects of their programs, 

yet participation by persons with mental retardation remains quite low. 

PCMR recommends: 

 Insure that employment programs for adolescents and young adults with 

mental retardation don't exclude those individuals with the most 

significant support needs. Persons with significant disabilities are those 

who can benefit most from participation in supported employment and 

other integrated employment alternatives. 

 Increase the participation of students with mental retardation in local 

programs established through the School-to-Work Opportunities Act 

initiatives in proportion to their participation in the overall school population.

 Increase the participation of adolescents with mental retardation in youth 

employment programs operated by the Department of Labor's Employment 

and Training Administration programs and the Department of Education's 

Office of Vocational Education. 
PCMR Report Page 39

 Provide individuals with disabilities and their families the opportunity to 

realize the full promise of welfare reform by having an equal opportunity 

for employment through State programs established under the Personal 

Responsibility and Work Opportunity Reconciliation Act. 

Access to Qualified Personnel 

A commitment to consumer-driven services demands a change in the 

way we train and prepare consumers and human service professionals to 

participate in the employment process. People should have access to skilled 

and motivated support providers to enable those individuals who want to work 

to find and maintain satisfying employment. Training should be directed 

toward consumers, their families, advocates and members, as well as human 

service professionals. 

PCMR recommends: 

Provide information and training on consumer-driven services directly to 

consumers, their families, and peer mentors. Training and dissemination 

resources should be focused on raising people's expectations of 

employment and meaningful careers and on helping them to secure the 

supports they need to achieve their goals. 

Require each local Social Security office to have an individual on staff 

who is thoroughly trained as a work incentive specialist(s) who can 

provide assistance to consumers throughout the entire process. 

Encourage local school districts and adult service agencies to target 

training efforts toward students with disabilities to enable them, to the 

maximum extent possible, to direct their own career preparation programs. 

Training efforts should focus on establishing career objectives, directing 

one's own transition planning meetings, understanding post-school 

services and effectively advocating for oneself. 
PCMR Report Page 40

 Establish subsidized training programs, tuition vouchers, and other "public 

service" benefits for persons who enter the roles of supporting 

employment outcomes for persons with mental retardation. 

Support for Employers 

Employers value their workforce and are accustomed to providing 

supports to employees who possess a wide range of abilities and needs. They 

invest tremendous amounts of time and money in their personnel. Employers are 

using a number of new and innovative strategies to develop and retain high 

quality workforces—implementing flexible work patterns, redesigning jobs to 

match the capabilities of workers and developing career paths that consider the 

abilities and needs of workers at various stages of their careers. These strategies 

are applicable to all workers and are particularly appropriate to individuals with 

mental retardation. 

Employers overwhelmingly indicate a willingness to hire and retain 

individuals with mental retardation. They want to make certain that their 

company possesses the expertise to respond to the needs of employees with 

disabilities and respond to potential workplace problems. 

Significantly, they frequently indicate that they experience difficulties in 

gaining access to the resources necessary to provide workplace 

accommodations. 

PCMR recommends: 

 Expand the current Work Opportunities Tax Credit so that the economic 

incentives to employers are equivalent to that provided by the Welfare to 

Work Tax Credit. 
PCMR Report Page 41

 Provide employers convenient access to the information and technical 

assistance they need to provide training, support and accommodations to 

individuals with mental retardation on their workforce. 
PCMR Report Page 42

CONCLUSION 

"What we can't afford to do is let even one of our human resources slip 

through the cracks and not be utilized because of some outdated 

thoughts about disability.” 

- John Sharp, Texas Comptroller of Public Accounts 

At one level, the obstacles that limit the employment of individuals 

with mental retardation seem overwhelming. Despite our best intentions, our 

service systems too often promote long-term dependence on Federal subsidies 

and thwart the desires and preferences of individuals with mental retardation 

and their families. Individuals who attempt to gain employment are too often 

threatened with loss of health care and other benefits. Lengthy waiting lists in 

many States and communities mean that many individuals are unable to gain 

access to any type of service and are forced into lives of idleness and 

discouragement. The rate of participation of individuals with mental 

retardation in major Federal programs designed to meet the employment needs 

of all our citizens is unnecessarily low. Discrimination continues to occur 

based on outdated attitudes and stereotypes. In combination, these obstacles 

have combined to make the unemployment of individuals with mental 

retardation a chronic problem that has frustrated individuals, their families, 

service providers and policy-makers for many years. 

As we move toward the close of the twentieth century, we enter a 

period of unparalleled opportunity for change. Individuals with mental 

retardation continue to express their desires for meaningful and satisfying 

careers. Advances in technology and public expectations have enabled many 

individuals to enter the workforce for the first time. Strong Presidential 

leadership has created a climate of change and commitment to reform that 

holds the promise of finding new and lasting answers to long-term problems. 

While the problems are complex and challenging, in most instances, the 

solutions are obvious and lie within our reach. Legislative changes can 
PCMR Report Page 43

eliminate the disincentives to employment that lie within our current systems. 

Increased Federal and State leadership can reduce our reliance on segregated 

programs and enable individuals to gain access to the transportation, health 

care, and other supports they need to succeed in their chosen career. An 

increased role for individuals with mental retardation and their families in the 

design and delivery of services will improve service quality and increase 

program accountability. 

We know what can and must be done. What is required is the 

combined commitment of individuals and their families, government at all 

levels, and business and industry to make certain that all individuals with 

mental retardation who desire to work will be able to obtain access to the 

services and supports they need to make their goals a reality. To do less will 

result in forced idleness and dependence that is both unnecessary and 

damaging to our Nation and our citizens with mental retardation. 
Lorenzo H. Aguilar-Melancon 

President 

Perspectiva 

7380 Remcon Circle

El Paso, Texas 79912 

Phone: 915-833-2488 

FAX: 915-833-3424 

Jane L. Browning 

Director 

Division of Membership Services 

and Publications 

National Association of Social Workers 

750 First Street, N.E. 

Suite 700 

Washington, D.C. 20002-4241 

Phone: 202-336-8214 1-

800-638-8799, ext.' 214 

FAX: 202-336-8312 

E-Mail: jbrownin@naswdc.org

Ann M. Forts 

P.O. Box 644 

Center Harbor, New Hampshire 03226 

Home: 603-253-6721 

FAX: 603-279-4582 

Sally A. Jochum

Johnson County Developmental Supports 

10501 Lackman Road 

Lenexa, Kansas 66219 

Phone: 913-492-6161, ext. 425 

FAX: 913-492-5171 

E-Mail: sally.jochum@jocks.com

Joyce A. Keller

Executive Director 

JARC 

28366 Franklin Road 

Southfield, Michigan 48034 

Phone: 810-352-5272 

FAX: 810-352-5279 

Valerie J. Bradley

President 

Human Services Research Institute 

2336 Massachusetts Avenue 

Cambridge, Massachusetts 02140 

Phone: 617-876-0426 

FAX: 617-492-7401 

E-Mail: valbrad@aol.com

Robert D. Dinerstein, J.D. 

Associate Dean for Academic Affairs 

Washington College of Law 

at American University 

4801 Massachusetts Avenue, N.W. 

Washington, D.C. 20016 

Phone: 202-274-4141 

FAX: 202-274-4015 

E-Mail: rdiners@wcl.american.edu

Arthur M. Hamilton 

Minority Leader 

Arizona House of Representatives 

1700 West Washington 

Phoenix, Arizona 85007 

Phone: 602-542-3912 

FAX: 602-542-4308 

APPENDIX 

PCMR CITIZEN AND EX-OFFICIO MEMBERS 

Valerie J. Bradley 

Chair, President's Committee on Mental Retardation 

Washington, D.C. 
John F. Kennedy, J.D. 

President 

Reaching Up, Inc. 

434 East 52nd Street 

Suite 1E 

New York, New York 10022 

Phone: 212-754-6750 

FAX: 212-754-0203 

Ruth Luckasson, J.D. 

Regents Professor and Professor of Special 

Education 

College of Education 

University of New Mexico 

Albuquerque, New Mexico 87131 

Phone: 505-277-7231 

FAX: 505-277-8360 

E-Mail: ruthl@unm.edu

Donna Nigh 

3009 Hackberry 

Oklahoma City, Oklahoma 73120 

Phone: 405-751-7708 

Michael L. Remus 

Executive Director 

The Arc of Tennessee 

1719 West End Avenue, Suite 300E 

Nashville, Tennessee 37203 

Phone: 615-327-0294 

FAX: 615-327-0827 

E-Mail: mremus@ksbe.state.ks.us 

Deborah M. Spitalnik, Ph.D. 

Executive Director 

University Affiliated Programs 

of New Jersey (UAPNJ) 

Brookwood II - 2nd Floor 

45 Knightsbridge Road 

P.O. Box 6810 

Piscataway, New Jersey 08855-6810 

Phone: 732-235-4447 

FAX: 732-235-5059 

E-Mail: spitalde@umdnj.edu

K. Charlie Lakin, Ph.D.

Director 

Rehabilitation Research and Training Center 

on Community Living 

University of Minnesota 

214 Pattee Hall 

150 Pillsbury Drive 

Minneapolis, Minnesota 55455 

Phone: 612-624-5005 

FAX: 612-625-6619 

E-Mail: lakin001@maroon.tc.umn.edu

T.J. Monroe 

Disability Rights Consultant 1156 

Waycross Road, Apt. A109 

Cincinnati, Ohio 45240 

Phone: 513-825-5771 

Elizabeth C. Pittinger 

1101 Virginia Avenue 

Pittsburgh, Pennsylvania 15211

Phone: 412-381-1578 

FAX: 412-381-1745 

E-Mail: ecpitt@aol.

Tom E.C. Smith, Ed.D. 

Professor and Associate Dean 

College of Education, ED100 

University of Arkansas at Little Rock 

Little Rock, Arkansas 72204 

Phone: 501-569-3016 

FAX: 501-569-8694 

E-Mail: tesmith@ualr.edu

Cathy Ficker Terrill 

Ray Graham Association 

2801 Finley Road 

Downers Grove, Illinois 60515 

Phone: 630-620-2222 

FAX: 630-628-2350 

E-Mail: cfterrill@aol.com
Jacquelyn B. Victorian, MSW 

Executive Director 

Independent Living, Inc. 

474 North Foster Drive 

Baton Rouge, Louisiana 70806 

Phone: 504-924-7998 

FAX: 504-924-7715 

Sheryl White-Scott, M.D. 

Director 

Adult Health Services 

Westchester Institute for Human Development 

221 Cedarwood Hall 

Valhalla, New York 10595-1689 

Phone: 914-493-8714 

FAX: 914-493-1973 

E-Mail: sheryl_white@nymc.educ

*The Honorable Janet F. Reno 

Attorney General 

U.S. Department of Labor (DoJ) 

10th & Pennsylvania Avenue, N.W. 

Washington, D.C. 20530-0001 

Phone: 202-514-2001 

*The Honorable Andrew Cuomo 

Secretary of Housing and Urban Development 

U.S. Department of Housing and Urban 

Development (HUD) 

451 7th Street, S.W. 

Washington, D.C. 20410-0001 

Phone: 202-708-0417 

*The Honorable Richard W. Riley 

Secretary of Education 

U.S. Department of Education (DoE) 

400 Maryland Avenue, S.W. 

Washington, D.C. 20202-0001 

Phone: 202-401-3000 

*Marca Bristo 

Chair 

National Council on Disability 

1331 F Street, N.W., Suite 1050 

Washington, D.C. 20004 

Phone: 202-272-2004 

FAX: 202-272-2022 

*Ex-Officio Member 

Barbara Yoshioka Wheeler, Ph.D 

Associate Professor of Clinical Pediatrics 

University Affiliated Program 

Mailstop #53 

Children's Hospital of Los Angeles 

P.O. Box 54700 

Los Angeles, California 90054-0700 

Phone: 213-669-2300 

FAX: 213-953-0439 

E-Mail: bwheeler%smtpgate@chlais.usc.edu

*The Honorable Donna E. Shalala 

Secretary of Health and Human Services 

U.S. Department of Health and Human 

Services (DHHS) 

200 Independence Avenue, S.W. 

Washington, D.C. 20201 

Phone: 202-690-7000 

*The Honorable Alexis M. Herman 

Secretary of Labor 

U.S. Department of Labor (DoL) 

200 Constitution Avenue, N.W. 

Washington, D.C. 20210 

Phone: 202-219-8271 

*Harris Wofford 

Chief Executive Officer 

Corporation for National and Community 

Service (CNCS) 

1100 Vermont Avenue, N.W. 

Room 6100 

Washington, D.C. 20525 

Phone: 202-606-5000 

*Gilbert Casellas 

Chair 

Equal Employment Opportunity 

Commission (EEOC) 

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

Washington, D.C. 20507 

Phone: 202-663-4900 

FAX: 202-663-7022 

The Honorable Kenneth S. Apfel 

Commissioner of Social Security 

Social Security Administration 

900 Altmeyer Building 

6401 Security Boulevard 

Baltimore, Maryland 21235-0001 

Phone: 202-358-6000 

FAX: 202-358-6077 or 6078 
PCMR STAFF 

Administration for Children and Families 

President's Committee on Mental Retardation 

Hubert H. Humphrey Building, Rm. 352-G 

200 Independence Avenue, S.W. 

Washington, D.C. 20201-0001 

Phone: 202-619-0634 

FAX: 202-205-9519 

Gary H. Blumenthal 

Executive Director 

John L. Pride 

Deputy Executive Director 

Laverdia T. Roach 

Special Assistant to the Executive Director 

Yolande Bestgen 

Director of Special Projects 

George H. Bouthilet, Ph.D. 

Research Director 

Thelma B. Lucas 

Mental Retardation Program Specialist 

Joan Williams 

Special Projects Specialist 

Bena Smith 

Program Analyst 

Sheila Whittaker 

Budget Officer 

Peggy Butler 

Secretary to the Executive Director 

Angie Green 

Secretary to the Deputy Executive Director 

Terry Lion 

Clerk-Typist 

Dina Bergman 

Clerk-Typist 

* U.S. GOVERNMENT PRINTING OFFICE: 1998 - 615 - 032 / 63169