A Better Place:

The Contribution of Americans with Mental Retardation to Our Nation's
Workforce

1998 Report to the President

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> Children and Families
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> President\'s Committee on Mental Retardation

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> A Better Place:

The Contribution of Americans with Mental Retardation to our Nation\'s
Workforce

1998 Report to the President

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height="1.1069444444444445in"}

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]{.underline}.

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

**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 millenium.

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.

**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 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 MVDD,
Education, Health and Vocational Rehabilitation, service providers and
representatives from key 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**.

**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.*

*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 parents. 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

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

-   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
    ari 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.

**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]{.underline}-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]{.underline}-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]{.underline}-Nearly three-fourths of all
    supported employment participants with mental retardation are
    Supplemental Security Income (SSI) recipients. Almost all of these
    people experience 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 ISO adults with
disabilities and community-based, school-to-work transition services for
students with severe and multiple disabilities. 7his 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 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 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 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. \**

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 apart-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
\$S. 00 an hour. Transportation is provided to and from work by the
school during the week and her parents on the weekends.*

*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 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 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 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.

**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.

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.

**Our Policies Must Match Our Beliefs**

*\"We must shift disability policy in America away from exclusion
towards inclusion \... and our policies away from paternalism to
empowerment. \"*

\- Vice President A1 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.

**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.

**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 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,

\"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 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 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.*

**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 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.

-   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.

-   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.

**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]{.underline}-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 costly vocational
alternatives that generate poor employment outcomes in favor of more
cost-effective employment options.

[Transportation]{.underline}-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]{.underline}-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.

-   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 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.

-   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 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 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.

-   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.

-   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.

-   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.

**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 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.

APPENDIX

PCMR CITIZEN AND EX-OFFICIO MEMBERS

Valerie J. Bradley

Chair, President\'s Committee on Mental Retardation

Washington, D.C.

Lorenzo H. Aguilar-Melancon

President

Perspectiva

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](mailto:jbrownin@naswdc.org)

Valerie J. Bradley

President

Human Services Research Institute

2336 Massachusetts Avenue

Cambridge, Massachusetts 02140

Phone: 617-876-0426

FAX: 617-492-7401

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

Robert D. Dinerstein, J.D.

Associate Dean for Academic Affairs

Washington College of Law at American University

4801 Massachusetts Avenue, N.W.

Washington, D.C. 20016

Phone: 202-274-4141

FAX: 202-274-4015

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

Ann M. Forts

P.O. Box 644

Center Harbor, New Hampshire 03226

Home: 603-253-6721

FAX: 603-279-4582

Arthur M. Hamilton

Minority Leader

Arizona House of Representatives

1700 West Washington

Phoenix, Arizona 85007

Phone: 602-542-3912

FAX: 602-542-4308

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](mailto:sally) <jochum@jocks.com>

Joyce A. Keller

Executive Director

JARC

28366 Franklin Road Southfield, Michigan 48034

Phone: 810-352-5272

FAX: 810-352-5279

John F. Kennedy, J.D.

President

Reaching Up, Inc.

434 East 52nd Street Suite lE

New York, New York 10022

Phone: 212-754-6750

FAX: 212-754-0203

Ruth Luckasson, J.D.

Regents Professor and Professor of Special Education

College of Education University of New Mexico

Albuquerque, New Mexico 87131

Phone: 505-277-7231

FAX: 505-277-8360

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

Donna Nigh

3009 Hackberry

Oklahoma City, Oklahoma 73120

Phone: 405-751-7708

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: lakin00I@maroon.tc.umn.edu](mailto:lakin00I@maroon.tc.umn.edu)

T.J. Monroe

Disability Rights Consultant 1

156 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.](mailto:ecpitt@aol.)

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](mailto:mremus@ksbe.state.ks.us)

Tom E.C. Smith, Ed.D.

Professor and Associate Dean

College of Education, ED 100

University of Arkansas at Little Rock

Little Rock, Arkansas 72204

Phone: 501-569-3016

FAX: 501-569-8694

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

Deborah M. Spitalnik, Ph.D.

Executive Director

University Affiliated Programs of New Jersey (UAPNJ)

Brookwood II - 2nd Floor

45 Knightsbridge Road

P.O. Box 6810

Piscataway, New Jersey 08855-6810

Phone: 732-235-4447

FAX: 732-235-5059

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

Barbara Yoshioka Wheeler, Ph.D

Associate Professor of Clinical Pediatrics

University Affiliated Program

Mailstop #53

Children\'s Hospital of Los Angeles P.O. Box 54700

Los Angeles, California 90054-0700

Phone: 213-669-2300

FAX: 213-953-0439

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

Sheryl White-Scott, M.D.

Director

Adult Health Services

Westchester Institute for Human Development

221 Cedarwood Hall

Valhalla, New York 10595-1689

Phone: 914-493-8714

FAX: 914-493-1973

[E-Mail: sheryl](mailto:sheryl)white@nymc.educ

\*The Honorable Donna E. Shalala

Secretary of Health and Human Services

U.S. Department of Health and Human Services (DHHS)

200 Independence Avenue, S. W.

Washington, D. C. 20201

Phone: 202-690-7000

\*The Honorable Janet F. Reno

Attorney General

U.S. Department of Labor (DoJ)

10th & Pennsylvania Avenue, N. W.

Washington, D.C. 20530-0001

Phone: 202-514-2001

\*The Honorable Alexis M. Herman

Secretary of Labor

U. S. Department of Labor (DoL)

200 Constitution Avenue, N. W.

Washington, D.C. 20210

Phone: 202-219-8271

\*The Honorable Andrew Cuomo

Secretary of Housing and Urban Development

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

451 7th Street, S. W.

Washington, D.C. 20410-0001

Phone: 202-708-0417

\*The Honorable Richard W. Riley

Secretary of Education

U.S. Department of Education (DoE)

400 Maryland Avenue, S.W.

Washington, D.C. 20202-0001

Phone: 202-401-3000

\*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

\*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 - 615-032163169**