2004

A CHARGE WE HAVE TO KEEP

A Road Map 

to Personal and Economic Freedom for 

People with Intellectual Disabilities 

in the 21st Century 

President's Committee for People with 

Intellectual Disabilities 
Disclaimer

ii The President's Committee for People with Intellectual Disabilities

This report, A Charge We Have to Keep: A Road Map to 

Personal and Economic Freedom for People with 

Intellectual Disabilities in the 21st Century, 2004, does not

necessarily reflect the views of the U.S. Department of 

Health and Human Services. 

In addition, although some of the information and data

contained in this report were contributed by authorities in 

the field of disability, public policy, communication and 

related fields, the personal opinions that such contributors 

may hold or choose to express outside of this report do

not necessarily reflect the views of the President's

Committee for People with Intellectual Disabilities or the 

U.S. Department of Health and Human Services. 
The President's Committee for People with Intellectual Disabilities

On July 25, 2003, in celebration of the 13th anniversary of the Americans with Disabilities Act, President 

George W. Bush signed Executive Order 12994 as amended, continuing the work of the Committee, but 

renaming it the President's Committee for People with Intellectual Disabilities (PCPID). With this Order,

President Bush recognized that a new name and language make a difference in people's lives. 

The term "mental retardation" was coined many years ago to try to better describe a condition that 

many people have. Since then, attitudes about people with disabilities have changed to focus on 

abilities, personal growth, and how to improve independence. A new term was needed to reflect this

change in attitudes. Perhaps more importantly, the term "mental retardation" has taken on negative

connotations over the years. It has led to misunderstandings by adults, children, and the media about

people who have intellectual disabilities and has resulted in the use of language that is often 

demeaning, hurtful, and humiliating to self-advocates and their families. 

A New Name and a New Century
vi The President's Committee for People with Intellectual Disabilities

Windy Smith and Michael Rogers, self-advocate members of the PCPID, pushed for the name change

to reflect a more human-focused approach: 

"We talk about changing the way our government and communities see 

persons with intellectual disabilities. . . We should not hesitate to make 

a name change to start the process."

For these reasons, President Bush agreed with the Committee's recommendation that we needed to 

change our name. The name change is not just cosmetic. It signals a new beginning and a 

revitalization of the PCPID's mission in the 21st Century: to better recognize and uphold the right of

all people with intellectual disabilities to enjoy a quality of life that promotes independence, selfdetermination, and participation as productive members of society. 

The goals of the President's Committee include: the assurance of full citizenship rights of people with

intellectual disabilities; the provision of all necessary supports to individuals and families; the reduction

of the occurrence and severity of intellectual disabilities; and the promotion of the widest 

dissemination of information of models, programs, and services within the field of intellectual

disabilities. 
The President's Committee for People with Intellectual Disabilities vii

Disclaimer ii

Letter from Madeleine C. Will, Chairperson, President's Committee for People 

with Intellectual Disabilities iii 

A New Name and a New Century v

Introduction 1

The President's Committee for People with Intellectual Disabilities 7

Public Awareness 13

Public Awareness Recommendations 16

Performance Management 17

Performance Management Recommendations 20

Education and Transition from School to Work and Adult Life 21

Education and Transition from School to Work and Adult Life 

Recommendations 26

Employment and Asset Development 27

Employment and Asset Development Recommendations 35

Family Services and Supports 37

Family Services and Supports Recommendations 42

Table of Contents 
viii The President's Committee for People with Intellectual Disabilities

Assistive Technology and Information 43

Assistive Technology and Information Recommendations 46

Road Map to Success 47

Executive Summary and Recommendations 53

References 59

PCPID Citizen Members 63

PCPID Ex Officio Members 64

PCPID Subcommittees 68

PCPID Staff 69

Acknowledgments 70
The President's Committee for People with Intellectual Disabilities 1

These are unprecedented times for people with disabilities. In the past 15 years, we have seen: 

 The Americans with Disabilities Act of 1990. 1

 Amendments to The Individuals with Disabilities Education Act of 1997.2

 The Ticket to Work and Work Incentives Improvement Act of 1999.3

 The U.S. Supreme Court's Decision in Olmstead v. LC.4

 President George W. Bush's New Freedom Initiative. 5

 The No Child Left Behind Act of 2001.6

 The explosion of technological advances for people with disabilities. 

Changes in public policy are beginning to remove barriers that force persons with disabilities to choose

between work and health care. The Ticket to Work and Work Incentives Improvement Act allows states

to provide continued Medicaid coverage to working persons with disabilities by allowing a buy-in 

option. Over two-thirds of the states are now in various stages of development and implementation of 

such buy-in options for workers with disabilities. 

According to the 2004 report, The State of the States in Developmental Disabilities,' federal funds

constituted 23 percent of the total allocation for community services in 1977. By 2002, that proportion 

had increased to 50 percent of total community services spending. Between 1990 and 2002, federal 

spending, as a proportion of total community services spending, advanced from 27 percent to 50 

percent. The growing contribution of federal funds in the financing of community services for persons 

with developmental disabilities, including persons with intellectual disabilities, across the nation is

evident on the next page.'

Introduction 
The State of the States in Developmental Disabilities also shows that during 2000-2002, 

inflation-adjusted community spending in the United States advanced 17 percent. 

These advances reflect our society's shift to a new paradigm of disability, based less on a 

medical model of treatment, impairment, and limitations and more on ability, independence, 

dignity, inclusion, and supports. 

"The new paradigm of disability maintains that disability is an interaction 

between characteristics (e.g., conditions or impairments, functional status, or 

personal and social qualities) of an individual and characteristics of the 

natural, built, cultural, and social environments. It embodies the concept 

that a disabled person is no longer viewed only as someone who cannot 

function because of an impairment, but also as someone who may need or use 

accommodations in order to function." 

Steven Tingus 

Director, National Institute on Disability and Rehabilitation Research 

Chair, Interagency Committee on Disability Research 

FIGURE 4 

UNITED STATES 

TRENDS IN SPENDING FOR COMMUNITY SERVICES 

BY LEVEL OF GOVERNMENT: FYs 1977-2002 

$14

$12

co • $10

O2 

 $8

0 

2 6 .6 tg

s IS:

$4 

$2

$0

77 78 79 80 81 82 83 84 85 86 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 

Fiscal Year 
The President's Committee for People with Intellectual Disabilities 3

i The PCPID considers the terms "mental retardation" and "intellectual disabilities" to be synonymous, covering the same population in

number, kind, level, type and duration of the disability, and the need by individuals for specific services and supports. Thus, the American

Association on Mental Retardation's definition for "mental retardation" serves as the definition for "intellectual disabilities." The PCPID is

aware that there is a strong need for continued improvement in both quantity and quality of data collected and used in this report and other 

publications in the field. 

People with intellectual disabilities, like all Americans, share the American dream to advance their 

social and economic freedoms, and more and more people are doing so successfully. Selfdetermination has become a nationwide movement that commands the attention of policymakers at 

every level of federal, state, and local government. There are increasing numbers of individuals with 

intellectual disabilities included in mainstream classrooms and post-secondary schools and training.

Many adults are living independently or with supports in the community, marrying, having 

families, and working, just as other Americans. The self-advocacy movement has grown tremendously 

and there are now self-advocacy organizations in forty-four states. 9

Although these examples represent significant progress, such progress is often not reflected in the life

of the average person with intellectual disabilities. It is estimated that between seven and eight million

Americans of all ages, about 3 percent of the general population, have intellectual disabilities.10

Taking the year 2002 as an example: 

 Around 90 percent of adults with intellectual disabilities were not employed. 11

 Less than 1 percent of people with intellectual disabilities owned their own home.12

 26 percent of youth with intellectual disabilities dropped out of school.13

 Fewer than 15 percent participated in post-secondary education.14

 Over 365,000 people were employed in sheltered workshops or were in day programs or 

prevocational services.15

 Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) were a

major source of income for people with intellectual disabilities. In December 2001, there were

almost 1.1 million adults and children receiving SSI payments based on intellectual 

disabilities. There were almost 600,000 receiving SSDI benefits.16

 At least 50,000 people with intellectual disabilities were on waiting lists for Medicaid 

waiver services for individual and family supports.17

 Over 700,000 people with intellectual disabilities lived with parents aged 60 or older.18

These dismal statistics describe a situation that would clearly be unacceptable for any group of 

people in this great nation in the 21st Century. Applied to such a significant portion of the 

population, they are simply intolerable and must be improved.i

Illustration by: Jayson R. Gleneck
6 The President's Committee for People with Intellectual Disabilities

Especially serious is the fact that many, many individuals with intellectual disabilities can be, and 

want to be, productive members of society, but are dependent on programs that prevent them from

being so. For example, the major support and health programs, SSI and Medicaid, require people to

have such limited income and assets to receive these critical supports that they effectively prevent

individuals from being able to earn and save sufficiently to improve their lives. The irony is that these

limitations were intended to save taxpayer dollars, but they have the paradoxical effect of 

prolonging dependence and, ultimately, costing more. 

The advances that have been made in recent years raise a differentsort of problem. Numerous government

programs, with overlapping missions and sometimes conflicting policy goals, have grown up 

alongside one another—both confusing intended beneficiaries and families and not delivering valued

results. There are so many different programs administered by so many different agencies that people

with intellectual disabilities and their families face a maze of overregulated, fragmented, sometimes

conflicting, and always complex systems of benefits and supports. They are systems that are in 

critical need of realignment to encourage collaboration among agencies, with a blending of 

resources across funding streams, to achieve individual preferred outcomes. The "disability maze" 

depicted on the preceding pages illustrates the enormous complexity of the system.
The President's Committee for People with Intellectual Disabilities 7

The President's Committee for People with Intellectual Disabilities (PCPID) believes, 

passionately, along with the President, that the situation described in the preceding section is

wrong, discriminatory, contrary to common sense and not good public policy. The Committee, at its

very first meeting, decided that the President's New Freedom Initiative (NFI) would provide a great 

opportunity to focus on the specific needs of persons with intellectual disabilities. The NFI would

provide guidance for our deliberations and recommendations. It was designed to further the

progress made since the enactment of the Americans with Disabilities Act (ADA) by: 

 Promoting full access to community life. 

 Expanding educational opportunities. 

 Increasing the ability of Americans with disabilities to integrate into the workforce. 

 Increasing access to needed technologies. 

Committee members also took guidance from the PCPID Charter, which requires the membership to:

 Evaluate and monitor the national effort to establish appropriate policies and supports for people

with intellectual disabilities. 

 Provide suggestions for improvement in: the delivery of services to people with intellectual 

disabilities, including preventive services; the promulgation of effective and humane 

policies; and the provision of necessary supports. 

 Identify the extent to which various federal and state programs achieve the national goals for

people with intellectual disabilities described in the preamble of the Executive Order for the

President's Committee for People with Intellectual Disabilities, so as to have a positive

impact on the lives of people with intellectual disabilities. 

 Facilitate liaison among federal, state, and local governments, foundations, non-profit 

organizations, other private organizations, and citizens concerning people with intellectual 

disabilities. 

 Develop and disseminate such information as will tend to reduce the incidence and severity of

intellectual disabilities. 

The President's Committee for People 

with Intellectual Disabilities 
8 The President's Committee for People with Intellectual Disabilities

 Promote community participation and the development of community supports for 

citizens with intellectual disabilities. 

During the period 2002-2004, the President's Committee met five times to consider how to 

address these challenges. We also formed five subcommittees that relate to the basic 

categories addressed in the New Freedom Initiative and the goals in our charter: 

 Public Awareness 

 Education and Transition from School to Work and Adult Life 

 Employment and Asset Development 

 Family Services and Supports 

 Assistive Technology and Information 

In September 2003, the Committee also hosted three roundtable discussions. The first 

examined the challenges and opportunities of self-determination. The second examined 

options to improve outcomes for youth in transition and adults seeking employment. The third 

examined issues of public awareness. Participants in the roundtables included representatives 

of, and experts in: 

 Local, state, and federal government agencies; 

 Non-profit organizations that represent constituents at the local, state, and federal 

levels, including self-advocates; 

 Academic disciplines; 

 Data collection; 

 Public relations and communications; 

 Health issues; 

 Employment issues; 

 Education; and 

 Charitable organizations. 

Based on our discussions, we concluded that there were a number of issues we should address 

and that are now reflected in our recommendations to the President in this report. 

Public Awareness. Foremost, we concluded that there are enormous, pervasive problems

in public attitudes towards people with intellectual disabilities—in schools, in the

workplace, in communities, and in the media. 

It is a self-perpetuating cycle: children do not learn about the abilities, feelings, and value of 

people with intellectual disabilities, and adults retain their misconceptions, negative 

expectations, and stereotypical ideas. The media, often unintentionally, reinforce the stereotypes 

and prejudices. 
The President's Committee for People with Intellectual Disabilities 9

The PCPID firmly believe that, unless and until we can start to change attitudes and 

misunderstandings about who people with intellectual disabilities are, progress in selfdetermination, community participation, education, and employment will continue to be 

measured only in inches instead of miles. The PCPID thinks that it is especially important to 

start to change attitudes in school-age children and employers so that the cycle can be broken. 

Performance Management. Several of the principles in our charter refer to our mission

to advise the President about how successfully the federal government is serving people 

with intellectual disabilities in: 

 Policymaking. 

 Measurement and accountability. 

 Cooperation and coordination among federal agencies. 

 Coordination with organizations and people outside the federal government. 

Government agencies do not all have the same understanding and do not have coherent policies 

with respect to people with intellectual disabilities. For example, while one agency might open 

doors to employment, barriers may exist in another agency. Much of the positive, innovative 

work at all levels of government is really a function of individuals in government agencies 

seeking cooperation and collaboration on their own. 

This Committee believes that most significant among the reasons that we have not seen 

sufficient improvement in the past is that there has been inadequate evaluation or measurement 

of the progress of federal agencies, and there is little accountability. In this report, we make a 

major recommendation for improving this situation that we believe the President could 

implement immediately. 

Education and Transition from School to Work and Adult Life. We also identified many 

issues related to education, from preschool through high school and beyond, to transition, 

adulthood and work, especially as they relate to the No Child Left Behind Act of 2001 and 

the Jobs for the 21st Century initiative, announced by the President, January 2004. 

The latter is a comprehensive plan to better prepare workers for jobs in the new millennium by 

strengthening post-secondary education and job training and improving high school education. 

Among the key issues identified by the PCPID were the need for better school accountability, 

appropriate standards for all students, curriculum improvements, more emphasis on reading 

instruction, more post-secondary education programs and training, including programs that 

permit students to enroll in high school and post-secondary programs, higher teacher 

qualifications and more intensive training. 
10 The President's Committee for People with Intellectual Disabilities

Success in our schools is fundamental to the future success of individuals with intellectual 

disabilities as adults and we believe that it is the best way to significantly improve their 

employment prospects. 

Employment and Asset Development. Employment and asset development for people 

with intellectual disabilities are critical issues.

Current estimates indicate that around 90 percent of all people with intellectual disabilities 

are unemployed. Yet most are capable and interested in working and earning an income. 

With increased employment opportunities, they will not only earn income and improve their 

sense of positive self-worth, but will contribute to the nation's tax base and reduce their

dependency on government. 

A net result of employment would be the creation of a new social network for individuals with 

intellectual disabilities and their families -- like a ripple effect, it would yield some new 

benefits not often recognized, known or readily available. The benefits would include a series 

of new and different networks, including associates, friendships and partnerships that arise 

from employment of their family member with intellectual disabilities. 

Families would become more encouraged and hopeful of life in so many different ways through 

employment of their adult-child with intellectual disabilities. Correlated gains are anticipated 

when their parents, guardians or caregivers seek employment for themselves. Such gains 

translate into a significantly expanded pool of available citizens for employment and taxpayers 

in America. The overall impact on the nation's economy may be tremendous when one considers 

that one out of every ten American families has children or adults with intellectual disabilities. 

Most of the relatively few adults with intellectual disabilities who are currently employed only 

hold part-time or temporary positions. Many earn salaries that are lower than the minimum 

wage and are not able to generate sufficient income to open a savings account. However, the 

few who are able to open a savings account often face barriers to asset development resulting 

from current policies and regulations. 

As appalling as it may seem, there are parents and family members who are discouraged from

establishing savings accounts in the names of their children or adults with intellectual 

disabilities. Selected government benefits programs limit participation of people with 

intellectual disabilities because of the nature of their disability and their receipt of government 

benefits. 
The President's Committee for People with Intellectual Disabilities 11

The threat of falling deeper into poverty is quite real for those who contemplate employment if they

become ineligible for disability benefits. There is a need to create a solid platform on which Americans

with intellectual disabilities and their families can stand. That platform needs to consist of adequate 

employment opportunity and asset building without the threat of lost benefits. 

Time is an essential component for both employment and savings to ensure success on-the-job and permit

achievement of asset building capacity; otherwise, benefits are removed too soon and the risk of 

failure becomes too high for the individual and family. Given a solid chance to succeed, such

individuals and their families will be able to strengthen America in countless ways. 

Family Services and Supports. As previously noted, another one of the more significant problems

we see is that many people with intellectual disabilities have to be poor and to stay poor to get the 

health care, interventions, and the services they need. 

For example, over a million Americans with intellectual disabilities rely on SSI for their 

subsistence and Medicaid for their health care. These programs create a cycle of dependence 

because they limit the income and assets a person can have without losing eligibility. We think that 

such policies isolate the individuals they are intended to serve and that they are not good public

policy. Good policy would provide a means for saving and planning so that individuals can eventually

reduce or even eliminate their reliance on these programs. 

Assistive Technology and Information. Access to technology by persons with intellectual 

disabilities is essential to achieve the goals of the President's New Freedom Initiative. 

Technology and access to information play a central role in the lives of all people in our society, 

including persons with intellectual disabilities. Application of technology is vital to education, 

employment, independent living, and community inclusion. Federal agencies must collaborate to 

determine appropriate funding sources for technology to improve access and availability for 

persons with intellectual disabilities. 
12 The President's Committee for People with Intellectual Disabilities

These principles underlie all of our recommendations. 

Name Change: An Early Success

One of the Committee's recommendations has already been implemented. On July 25, 2003, in celebration 

of the 13th anniversary of the Americans with Disabilities Act, the President signed an Executive Order 

that renamed the Committee. The President's Committee on Mental Retardation is now known as the 

President's Committee for People with Intellectual Disabilities. With this Order, President Bush recognized 

that a new name and language make a difference in people's lives. The name change is not just cosmetic.

Words are powerful. Changing them can make a difference in people's attitudes, understanding, and selfesteem. 

Responsible government recognizes and supports 

individual self-determination as a preferred means to 

achieve new levels of customer satisfaction and personal 

and economic freedom. 

Responsible government recognizes and rewards 

performance and results. 

Responsible government recognizes and rewards 

innovation and collaboration within and across federal 

agencies and with the private sector. 

From our discussions, we also developed a common set of three principles regarding government 

responsibility: 
"Having people with intellectual disabilities fully incorporated into the fabric of

American Society should be the goal of every person in the United States. Not just

because it is the right thing to do, but also because 

it is the wise thing to do. The story of America is written in the handwriting of a diverse

people, many of whom were not included in the original Charter of this great nation. But, 

as each new group of Americans has gained recognition, acceptance and incorporation 

into our society, they have added immeasurably to the strength of us all." 

"People with intellectual disabilities have a great deal to offer America. But, we must first

recognize them as fellow human beings and citizens; accept their abilities and work for their 

mainstreaming into every aspect of American life from education to employment." 

Neil Romano

President and CEO

America's Strength Foundation, LLC

PUBLIC AWARENESS

"People with intellectual disabilities are first and foremost people; people with a full range of

emotions, hopes and dreams. One of the most important responsibilities of the President's 

Committee for People with Intellectual Disabilities is to communicate the very real facts that 

people with intellectual disabilities can be educated, can work and can play an important part

in our society. We must dispel the myths, which hold back a large segment of our citizenry, 

to the detriment of us all." 

Kim Porter-Hoppe

Chair, PCPID Subcommittee on Public Awareness

The President's Committee for People with Intellectual Disabilities 13

Over the past quarter of a century, policymakers have been reacting to attitudinal and

institutional barriers that have subjected children and adults with intellectual disabilities to lives 

of exclusion, isolation, and segregation. As previously mentioned, significant pieces of 

legislation, such as the Americans with Disabilities Act of 1990, Amendments to the 

Individuals with Disabilities Education Act of 1997, and the Workforce Investment Act of 

1998,19 have shaped an emerging Disability Policy Framework. 
14 The President's Committee for People with Intellectual Disabilities

Within this framework, our country is compelled to focus its energies on eliminating barriers 

to learning, work, and full participation in community life. 

The Olmstead Supreme Court Decision called for expanded community-based services and 

community living choices for people with disabilities. This decision led the Bush 

Administration to exercise leadership by accelerating "Real Choice and Systems Change" at 

the state and local level. The Real Choice Systems Change grants were designed to help states 

enable people with disabilities to reside in their homes and participate fully in community 

life.' Despite these two important developments, evidence still suggests that there is a 

continued attitudinal lag toward individuals with intellectual disabilities. This is noted in the 

classroom and the workplace. 

A recent major study of public attitudes revealed that the attitudes of the American public 

have not changed appreciably in the past 50 years, despite the many positive steps toward 

inclusion achieved through legislation and court decisions.21 The general public 

underestimates the capabilities of people with intellectual disabilities, perceiving them as less 

competent rather than more competent. Fewer than half of the public perceive them as capable 

of such skills as understanding a news event or handling their own money, and less than a 

third perceive people with intellectual disabilities as being capable of handling emergencies. It 

is apparent that the general public lacks an appreciation of the range of capabilities of people 

with intellectual disabilities, and, therefore, has low expectations of what they can do. 

Given the public's misconceptions about the capabilities of people with intellectual disabilities, 

it is no wonder that they do not support inclusion, particularly in public schools. The results of 

the study showed that more than two-thirds of the public believe that children with intellectual 

disabilities should be educated either in special schools or special classes within regular schools. 

Furthermore, almost half of the public expect that if children with disabilities were included in 

regular classes, they would disrupt the classroom and make it harder for other students to learn. 

These findings are striking, given the major effort within public schools to include children with 

intellectual disabilities in the regular classroom. 

Not everyone, however, holds negative attitudes. In fact, people who perceive people with 

intellectual disabilities as more capable support inclusion in work and school and expect few 

negative outcomes of inclusion. Therefore, in changing people's attitudes toward people with 

intellectual disabilities, we need to change how they think about such people, by demonstrating 

all that they are capable of. Attitudes and expectations of the public, in part, determine the 

degree to which children, adolescents, and adults with intellectual disabilities are able to learn, 

work, and live alongside their peers without disabilities. 
The President's Committee for People with Intellectual Disabilities 15

At the Public Awareness Roundtable in September 2003, members met with experts in public 

relations and communications. Based on the discussions at the roundtable and our deliberations 

both within the subcommittee and with the full PCPID, we strongly recommend a public 

awareness campaign that targets school-age children and employers. The Committee believes 

that a high-profile, national effort could make a difference in changing attitudes in these 

important groups. There can never be any real, lasting progress unless we can begin to change 

attitudes in school-age children and break the cycle of children learning prejudice and growing 

into prejudiced adults. The PCPID is partnering with the Special Olympics to change negative 

public attitudes toward people with intellectual disabilities. The Committee applauds Special 

Olympics for their public awareness program that targets all school-age children. 

Likewise, more employers need to understand that people with intellectual disabilities, like 

most people, can work and want to work. We need to educate employers about individuals with 

intellectual disabilities and the contributions they can make as workers in all employment 

settings. 

The PCPID Committee recognizes that attitudes in the classroom and the workplace will not 

change overnight, even with a public awareness campaign. Many people and organizations have 

tried to make a difference over the past 50 years and there is no question that attitudes change 

slowly. However, the Committee further believes that past campaigns have made a difference 

and that it is essential to keep working for change. 

The campaign should have a concise, specific message that promotes acceptance by changing 

the targeted audiences' understanding, expectations, and awareness of the abilities of children 

and adults with intellectual disabilities. It should portray people as equal and present a view 

that all belong. It must show people with intellectual disabilities so that they can be seen and 

heard. We also urge the President to participate, to help give the message the prominence it 

deserves. The President is in a unique position to broadcast this message. 
16 The President's Committee for People with Intellectual Disabilities

1. The PCPID invites and encourages you, Mr. President, to participate as the Committee's 

spokesperson in a national campaign specifically targeted to school-age children and 

employers to change negative public attitudes toward people with intellectual 

disabilities. The campaign should include a variety of media, including public service 

announcements, print and television features, and a web directory to assist employers to 

identify individuals with intellectual disabilities who are seeking employment. The 

Committee is eager to collaborate and is prepared to partner with corporations that 

already have had positive experiences hiring individuals with intellectual disabilities. 

2. The Committee is partnering with the Special Olympics to change negative public 

attitudes toward people with intellectual disabilities. 

Public Awareness Recommendations 
The President's Committee for People with Intellectual Disabilities 17

"For a parent of a child with intellectual disabilities, dealing with paperwork, forms 

and bureaucratic processes is often like walking into an advanced class of a foreign 

language with no background in that language. Families need to be freed from 

having to deal with this. They need to be and want to be parenting their child and 

focusing on that child's future." 

Karen Staley

Member, PCPID Subcommittee on Family Services and Supports

The 1993 Government Performance and Results Act (GPRA) introduced the concept of performance

management to federal government agencies. The Office of Management and Budget (OMB) and 

federal agencies are working together and asking new questions about how federal programs are

performing. Are programs effective? Are they well-managed? If not, what needs to be done to improve 

program performance?22

"Integrating services in the income support-related programs is happening where 

strong leaders and able managers, as well as motivated staff, share a clear vision 

and have the energy and patience to make the vision real." 

Mark Regan

Senior Fellow, The Rockefeller Institute

"Governments should be results-oriented...Where we find success, we should repeat 

it, share it, and make it the standard. And where we find failure, we must call it by its 

name. Government action that fails in its purpose must be transformed or ended." 

George W. Bush

Presidential Candidate

2000

PERFORMANCE MANAGEMENT 
18 The President's Committee for People with Intellectual Disabilities

The key to providing answers regarding the degree to which programs are effective and wellmanaged, and what needs to be done if they are not, is the establishment of performance 

measures that yield valid and reliable data. Apart from simple agency performance measures, 

these criteria also measure both interagency collaboration and how well agencies achieve 

outcomes working with individuals and with organizations outside of the federal government. 

There are no measures requiring collaboration among related programs. 

There is currently an absence of measures to assess agency support of recipient control of 

individual budgets to achieve new levels of personal and economic freedom. There is a need 

for better measures of hours worked and wages earned. There is no assessment of agency 

activity to partner with the private sector and to leverage resources for common valued 

outcomes and possible reduced dependence on government. 

The Committee applauds your Performance Management Initiative, Mr. President, which has 

created the Program Assessment Rating Tool (PART).23 This is an excellent approach to 

assessing the extent to which an agency is managing for results and maximizing program

performance. 

The following four sections of the PART raise a series of questions designed to provide 

a consistent approach to rating programs. 

Purpose/relevance/federal role — to assess whether the program design and purpose 

are clear and defensible. 

Strategic planning — to assess whether the agency sets valid annual and long-term

goals for the program. 

Program management — to rate agency management of the program, including 

financial oversight and program improvement efforts. 

Program results — to rate program performance on goals reviewed in the 

strategic planning section and through other evaluations. 

A suggested new approach for PART is to conduct an assessment across agencies and 

programs. This is necessary to determine the extent of overlapping goals and objectives and 

other relationships among and between agencies and programs. This would reveal the degree 

of an existing or total absence of a fluid continuity among agencies and programs. Continuity 

is very important for people with intellectual disabilities, for their disability or condition 

continues throughout their life span — from early family life, to education, to employment, to 

community living, and, finally, to retirement and end of life. 
The President's Committee for People with Intellectual Disabilities 19

On their journey through life, is there a dam or barrier in the way, or choppy waters making 

their trip difficult, or do we have smooth sailing yielding a continuous flow from one step to 

another? Life is a continual challenge for people with intellectual disabilities. Does a particular 

government program contribute to making it easier for them? It may contribute to the lives of 

people with intellectual disabilities when it considers and fosters a continuous flow between 

agencies and programs rather than permits singular discrete and fragmented agencies and 

programs to simply exist as "satisfactory." 

A singular agency or program may appear to be "successful" in accordance with PART, as 

currently configured, but that particular agency or program may well be a "failure" for 

people with intellectual disabilities. The PCPID suggests that OMB-PART consider the life 

span of people with intellectual disabilities when assessing agencies and programs. 

The President's Committee has focused on the lack of continuity, inconsistency of objectives, 

and fragmentation in the performance of programs for people with intellectual disabilities. We

believe that the Administration, with your leadership, has an opportunity to significantly 

improve the results of federal programs by utilizing the PART. With the proper performance 

measures in place, federal programs that have an impact on the lives of people with intellectual 

disabilities can be redirected from outcomes that perpetuate poverty, dependence and absence of 

personal freedom to valued results that lead to greater self-sufficiency, employment, and 

personal freedom. 

It is important, Mr. President, that you encourage early application of an enriched PART that 

would create a new culture of measurement and accountability that raises expectations for 

policymakers, service providers, parents, and individuals with intellectual disabilities. A 

collaborative effort would develop standards, benchmarks, and indicators around consumer 

control of funds and the blending of resources among relevant employment, income generation 

and wage status, asset development and greater control of resources, and the enhanced exercise 

of personal freedom. Across separate federal programs, a new expectation would be created that 

focuses on a menu of "individualized accommodation services" that address unified learning 

outcomes, employment or post-secondary opportunities and savings. 

These recommendations, if accepted and implemented, will reflect the Administration's 

commitment to achieve immediate, concrete, and measurable results. They will guide 

government to respond more efficiently and effectively to the demand for improved personal 

and economic freedom by Americans with intellectual disabilities and their families. They will 

help agencies identify and remove barriers to change. 
1. Establish a strategic partnership with the Office of Management and Budget, an 

appropriate non-governmental agency, and with the PCPID and other relevant federal 

agencies. The partnership would create a set of practical performance measures for 

agencies that administer federal programs that have an impact on people with 

intellectual disabilities to hold them accountable for the advancement of outcomes that 

improve personal and economic freedom. These measures and performance indicators

should be comprehensive, consistent, and complementary. 

2. Apply an enriched PART to 20 percent of the government's generic and disability 

specific programs each year, beginning in FY 2004, with follow up recommendations to 

address poor performance, and an annual report to Congress on the status of the 

improved program performance and outcomes. 

3. Urge Congress to conduct at least annual oversight hearings in the House and Senate to 

assess cross-agency performance with the advancement of outcomes that improve 

personal and economic freedom for people with intellectual disabilities. Such joint 

hearings should extend beyond traditional lines of authority to embrace a holistic view of 

individual and family support that analyzes relationships among tax, finance, economic, 

education, health care, and workforce policies. 

Performance Management Recommendations 

20 The President's Committee for People with Intellectual Disabilities
The President's Committee for People with Intellectual Disabilities 21

Students with intellectual disabilities have made great progress in public school over the past 

three decades with support from their parents, educators and school officials, who are working 

together, working out differences and striving to meet the vision of federal special education 

laws. In the 21st Century, the nation can aspire to even higher expectations for people with 

intellectual disabilities. Public schools must now prepare students with intellectual disabilities 

for a meaningful place in the economy and the workforce. 

In 1975, Congress passed the Education for All Handicapped Children Act (EAHCA), which 

was renamed the Individuals with Disabilities Education Act (IDEA) when the law was 

reauthorized in 1990.24 This law was truly a landmark piece of legislation. Prior to that time, 

many children and adults with intellectual disabilities resided in large public institutions. They 

had virtually no opportunity to obtain an appropriate education and to prepare for employment 

in their own community. Those who were not routinely excluded from school had few 

opportunities to live full and productive lives in their own communities. 

"Priorities and high expectations matter in the education of students with 

intellectual disabilities. Federal agencies should view services and 

supports for people with intellectual disabilities as a seamless pre K-16 

continuum. K-12 teachers and post-secondary faculty must be trained to 

educate students with intellectual disabilities to meet high standards." 

Annette Talis 

Chair, PCPID Subcommittee on Education and 

Transition from School to Work and Adult Life

"President Bush means No Child Left Behind quite literally. This doesn't mean that 

after you siphon off the children who have disabilities, or the children who were 

never properly taught how to read, or the children who never learned English, or the 

children who disrupted their classrooms, that most of the rest can learn. It means 

that all of our kids, even the ones our system calls "hard to teach," can learn. He 

understands that children with disabilities are the most likely to be left behind and 

have historically been left out and left behind." 

The Honorable Roderick R. Paige, Ph.D. 

Secretary, U.S. Department of Education

EDUCATION AND TRANSITION FROM 

SCHOOL TO WORK AND ADULT LIFE 
22 The President's Committee for People with Intellectual Disabilities

IDEA, which guarantees a free appropriate education in the least restrictive environment, 

ensured access to education for all students with disabilities. Students with intellectual 

disabilities could now participate in regular classes in their neighborhood schools and after 

graduation had the possibility to obtain jobs in their communities. While IDEA has played a 

critically important role in improving the lives of children and youth with intellectual 

disabilities and their families, Americans still have a very long way to go to "keep the charge." 

Over the past 28 years, Congress has made improvements to IDEA. These improvements have 

added a preschool program; early intervention services for infants, toddlers and their families; 

transition services; and increased family involvement in the educational process. During the 

last reauthorization of IDEA in 1997, key improvements were made in including and 

strengthening the least restrictive environment provisions; requiring that students with 

disabilities have access to, participate in, and make progress in the general curriculum; and 

requiring that students with disabilities participate in state and local assessments, and through 

alternate assessments if the student is unable to participate, even with accommodations. The 

requirement for their participation in assessments is essential for accountability. 

With the passage of the No Child Left Behind Act of 2001 (NCLB), accountability for the 

achievement of students with intellectual disabilities is incorporated into law. The President's 

Committee wishes to thank the Secretary of Education for his stance in insisting that school 

officials and educators are held accountable for closing the achievement gap for all students. 

Critically important to achieving accountability for students with intellectual disabilities is the 

development of appropriate standards and assessments for them. The PCPID recommends the 

creation of a blue ribbon panel to develop high quality alternate achievement standards, 

universally designed assessment tools, and measures to assess the implementation of NCLB for 

students with intellectual disabilities.

This panel would function as a clearinghouse for a wide array of approaches to assessment for 

students being tested across the country. It would ensure that students with intellectual 

disabilities have access to, participate in, and make progress in the general curriculum based on 

standards for all students, with assessments to include all students. Stephanie Lee, Director of 

the U.S. Department of Education, Office of Special Education Programs (OSEP), has said: 

"As we move into the 21st Century, the use of universal design principles 

holds great promise for all students struggling to achieve, especially 

students with intellectual disabilities. Universally designed and aligned 

standards, curriculum, instructional materials and strategies, and 

assessments that are designed to be valid and accessible for the widest 

possible range of students will provide a road map to success for 

students, teachers and parents." 
The President's Committee for People with Intellectual Disabilities 23

The President's Committee is especially pleased that the Department of Education is moving 

rapidly to develop the National Instructional Materials Accessibility Standard,25 and 

encourages further development of the standard to take advantage of the emerging 

technology, if made available, that would give students with intellectual disabilities real 

access to all instructional materials. 

Government, school officials and educators must ensure that NCLB and IDEA work together. 

NCLB now gives us real accountability at the school, district and state levels for students with 

disabilities. This includes evaluating students' progress in reading, language arts, mathematics 

and science. For some students with intellectual disabilities, there should be a national and 

individual priority to develop reading and communication skills because a narrower focus is 

required to achieve success in these areas. IDEA provides the mechanisms through the 

Individualized Education Program (IEP) and the Individualized Family Service Plan (IFSP)26 to 

make certain that students with intellectual disabilities, on an individual basis, make academic 

progress and also develop social, emotional, communication, career and vocational, selfdetermination skills and abilities. All of these activities should take place in inclusive 

environments, to the greatest extent possible, to prepare students with intellectual disabilities for 

both integrated employment and community living. 

The Department of Education's recent efforts to work with the PCPID, scholars, parents, 

school officials and organizations that represent individuals with intellectual disabilities to 

carefully craft administrative rules (Notice of Proposed Rulemaking, Federal Register,

December 9, 2003) will guide initial implementation of the NCLB provisions related to 

assessment and accountability for students with the most significant cognitive disabilities. The 

rules on assessing these students under NCLB should instruct states in developing new 

accountability programs. The Department of Education should review the progress of states 

against the following key principles: 

 School districts, educators and parents should resist the tendency to prematurely 

presume that any child cannot meet regular achievement standards or participate in 

regular large- scale assessments, with or without accommodations, based on a 

disability or diagnosis; 

 All children can be propelled with excellent instruction to achieve at higher levels over 

time and some students with intellectual disabilities can and should meet regular 

standards; 

 Parents and local professionals must have the flexibility to use their own judgment, 

rather than mandated diagnostics such as an IQ test, to determine which learners with 

significant intellectual disabilities cannot meet regular achievement standards, and 

could not be appropriately assessed using regular standardized tests; 

 The performance of some students with significant intellectual disabilities must be 

measured against alternate achievement standards, which differ in complexity, and that 

are linked to the knowledge, skills and dispositions that guide regular instruction; and 
24 The President's Committee for People with Intellectual Disabilities

• The population of students whose learning will be measured against alternate achievement

standards is finite and should not amount to more than a small percentage of the total 

enrollment, tethered to a flexible national benchmark of 1 percent of all students in 

public school. 

The goal of these principles is to reverse the negative historical trend in education to

underestimate the capacity of students with intellectual disabilities to learn, to view their 

performance as static and unchangeable and to allow the very notion of an intellectual disability 

to be defined by these inappropriate beliefs about potential. 

Students with intellectual disabilities have made significant progress because of IDEA. The 

presumption of ability to work for students with intellectual disabilities should be held by all 

educators: both administrators and teachers. More pupils are having successful work 

experiences, and the President's Committee recommends that these kinds of work experiences 

be made available to even more students with intellectual disabilities. 

This significant progress highlights the urgent need to ensure that decisions made during a 

student's last years of school and during the transition from school to work, be made in a way to 

lead to employment and income generation. While many students with disabilities are making 

the move to community employment, many, many more can make that transition if given 

necessary educational and vocational training. 

If these are the expected results and outcomes, there must be periodic examination of the 

funding decisions made, including Medicaid funding patterns, which are developed as a result of 

policy for students with intellectual disabilities during the transition process to ensure that 

funding patterns support the outcomes we want. 

The Committee believes that teachers need to provide the relevant knowledge and skills to 

people with intellectual disabilities that are most in need by employers. This should include 

specialized training for teachers in adaptive technology, which is expected to come into use 

more and more in classes, places of work, and a variety of other settings in the community. Of 

course, there are certain knowledge and skills that are basic and timeless, e.g., reading for 

literacy. 

There is a need for a seamless arrangement of resources from all pertinent federal sources 

applicable to the instruction of students with intellectual disabilities. There is also a need to 

remove barriers that limit the use of federal resources to be pooled with state and local funds to 

support and to enhance learning by students with intellectual disabilities while they are in high 

school. This will provide them with opportunities for dual enrollment leading to post-secondary 

education or for entering the nation's workforce. Effective blending of funds and family 

involvement are essential for a successful system to serve our citizens with intellectual 

disabilities. 
The President's Committee for People with Intellectual Disabilities 25

IDEA serves students through 21 years of age, depending on state law, and provides students 

with intellectual disabilities, ages 18-21 years, with limited options. Many of these students 

have had to stay in high school or participate in a "center" type program, which usually has 

consisted of segregated employment and earnings at below the standard minimum wage. 

The President's Committee supports new emerging opportunities for students with intellectual 

disabilities to become involved in various transitional programs located at two year colleges or 

four year universities, or to participate in vocational education and training programs in 

integrated community-based settings. Additionally, continuing education and training should be 

made available to people with intellectual disabilities as it exists for other people in our society. 

To implement such options, there is a need for funding support from a variety of sources, such 

as IDEA, vocational rehabilitation, Medicaid waivers, and other appropriate sources. 

Dual enrollment, a relatively new development for students with intellectual and other 

disabilities, allows them to complete high school while attending a two or four year college 

with same-age peers, pursue an academic or vocational curriculum, or a combination of both, in 

an inclusive setting. Such opportunity permits students with disabilities to remain eligible for 

services under IDEA, if deemed appropriate by the IEP. 

Mr. President, in your State of the Union Address on January 20, 2004,27 you announced the 

Jobs for the 21st Century initiative.28 This initiative should include students with intellectual 

disabilities in all of its facets. Those facets encompass improvement in reading instructions, 

acquisition of reading skills, improvement in post-secondary education outcomes, and 

improvements in postsecondary employment opportunities for all individuals with intellectual 

disabilities. Grants under this initiative should be considered on a pilot basis to provide 

incentives to educate and serve people with intellectual disabilities. Grants should also foster 

community-based initiatives that lead to improved employment and post-secondary outcomes 

for students with intellectual disabilities. 
26 The President's Committee for People with Intellectual Disabilities

1. Develop meaningful assessments and accountability by establishing an Intra-Agency 

Task Force, which would be facilitated by the U.S. Department of Education and include 

national experts, to provide ongoing guidance to states on universally relevant standards 

and appropriate assessments for students with intellectual disabilities under the No Child 

Left Behind Act. 

2. Support and promote the idea that the Jobs for the 21st Century initiative should improve

reading instruction, acquisition of reading skills, improvement in post-secondary 

outcomes and improvement in post-secondary employment opportunities for all 

individuals with intellectual disabilities. 

3. Develop relevant standards that apply to skills and competencies required in the work 

setting through a collaboration with the U.S. Departments of Education and Labor to 

apply the findings of the 1991 Secretary's Commission on Achieving the Necessary 

Skills (SCANS).29

4. Support quality teacher training and professional development to help all teachers learn 

to elevate the achievement of all students, including students with intellectual 

 disabilities. 

5. Increase post-secondary opportunities by providing opportunities for students with 

intellectual disabilities. 

6. Develop a seamless pre K-16 system of instruction and support to remove barriers that 

limit the ability of federal resources—including Social Security, Medicaid, special 

education, vocational education and other general education and human services 

resources—to be pooled with state and local funds to support students with intellectual 

disabilities while in high school, as they enter the workforce or post-secondary 

education. 

7. Foster community-based initiatives, as part of the Jobs for the 21st Century initiative, that

lead to improved employment and post-secondary outcomes for students with 

intellectual disabilities. 

Education and Transition from School to Work and 

Adult Life Recommendations 
The President's Committee for People with Intellectual Disabilities 27

"Every individual deserves the freedom to compete in the workplace on a 

level playing field, without regard to discriminatory barriers. Many 

individuals with intellectual disabilities are willing and able to work if 

provided with the right incentives and a fair chance. The federal 

government, in partnership with the employer community, must 

formulate aggressive strategies to increase opportunities for people with 

intellectual disabilities to seek and obtain gainful employment. 

Employers must recognize that individuals with intellectual disabilities 

represent a vast untapped pool of talent that can contribute to their 

bottom line productivity." 

Cari M. Dominguez

Chair, U.S. Equal Employment Opportunity Commission

Without employment, or a means of generating income, individuals with intellectual disabilities 

have limited freedom. 

"The theme, America Works Best When All Americans Work, 

emphasizes the Bush Administration's position of economic opportunity 

through job creation. It also builds upon the accomplishments of the 

President's New Freedom Initiative, which has created opportunities for 

persons with disabilities to be fully integrated into the 21st Century 

workforce.”

Elaine L. Chao 

Secretary, U.S. Department of Labor 

"Employment generates income. Savings can provide security. Equality is 

the desired outcome.” 

Edward Mambruno

Chair, PCPID Subcommittee on Employment and Asset Development

EMPLOYMENT AND ASSET DEVELOPMENT
28 The President's Committee for People with Intellectual Disabilities

Employment has been, and continues to be, the central component in adult life. It is not only a 

pathway to economic self-sufficiency, but it is also the gateway to social inclusion for 

Americans. For persons with intellectual disabilities, as has been noted in prior sections of this 

report, there are limited opportunities to achieve a higher level of economic self-sufficiency and 

increased social interactions through employment. Such limitations have an impact on current 

levels of activity and economic self sufficiency, and foster long-term dependence upon public 

resources for supports and services. 

Due to the unemployment rate of almost 90 percent among youth and adults with intellectual 

disabilities, it is clear that a social-economic safety net is needed to help to maintain and to 

support them and their families. This social-economic safety net must necessarily continue until 

the time when we have a much greater representation of people with intellectual disabilities 

employed in our workforce. Presently, too many people with intellectual disabilities and their 

families live in or near a state of poverty, or at some marginal income level. Besides the need 

for the continuation of the current social-economic safety net, which is absolutely necessary 

given our present situation, we need to open more doors to employment for youth and adults 

with intellectual disabilities in our society in order to reduce the unacceptably high 

unemployment rate. 

It is time for government to adopt an economic engagement strategy for persons with 

intellectual disabilities. Such a strategy would recognize the interests and skills of the person 

and acknowledge the needs of the community, in general, to maximize the employment 

potential of all of its workers. Given the declining number of available workers, employers 

cannot afford to ignore any segment of the current and future workforce. Historically, persons 

with intellectual disabilities have been viewed as not able to work, and thus, considered not part 

of the available workforce. It is time for a change that blends the interests of persons with 

intellectual disabilities with the needs of the workforce and the employers in the coming 

decades. 

Many forecasts show that there will be a shortage of available workers in the next two decades. 

This shortage is reflective of a number of factors, most particularly, the declining birth rate as 

well as the exit of the "baby boomers" from the workforce. 

"There is a projected shortage of 4.8 million workers in the labor market 

over the next ten years. In the next 20 years, a shortage of 19.7 million 

workers will occur. That means that employers are going to have to look 

differently at whom and how they hire." 

 Armentha Cruise 

President, Aspen Group 
The President's Committee for People with Intellectual Disabilities 29

Similar findings have been noted by a number of labor economists. The challenge is to make 

sure that the native abilities and skills of persons with intellectual disabilities do not go 

unrecognized. The interests and skills of this untapped labor pool can play a significant role in 

responding to the critical labor shortages forecast in the coming years. Improved educational 

experience and the aging of America will create new opportunities for persons with disabilities 

in the workplace. As a result, a new set of relationships must be forged with employers and the 

business community that transcends past perceptions and attitudinal barriers. 

Persons with intellectual disabilities can work, and want to work. Research has shown that for 

many of these persons, there is a perception that employment is not a realistic option. The 

internalized belief that one cannot work is well founded in the current policies and practices 

that require persons with disabilities to document inability to work as a pathway to accessing 

financial and health benefits. 

The presumption of an interest and ability to work by people with intellectual disabilities needs 

to exist among all educators and prospective employers. For this reason, meaningful work 

experience needs to be provided at both the secondary and post-secondary school level for the 

benefit of youth and young adults who are preparing for employment. This work experience 

should coincide with the needs of the open job market. Employers need to recruit workers with 

readily usable work experience. 

There is also a need for public awareness programs to educate and to stimulate prospective 

employers on the capabilities of individuals with intellectual disabilities. The work experience 

opportunity, coupled with a positive and receptive attitude among prospective employers, 

should help lead to the reduction of the very high unacceptable unemployment rate among 

people with intellectual disabilities. Meaningful work experience should result in more 

employment opportunities and the generation of both income and savings for our citizens with 

intellectual disabilities, which are largely non-existent at the present time. 

It is important to recognize that there is a need for open competitive and integrated employment 

for people with intellectual disabilities, where they can earn at least the standard minimum wage 

or higher. Many individuals with intellectual disabilities are currently employed in work centers 

that are not integrated and that pay less than the standard minimum wage. In 2002, 24 percent of 

vocational and day program participants in the United States worked in supported or competitive 

employment while the remaining 76 percent of participants received services in segregated 

settings, including sheltered employment, day activity, and day habilitation programs.30 As more 

and more students with disabilities complete effective employment transition programs in school 

programs, their potential will increase and, we hope, their horizons will improve. We need to 

promote the concept that youth and adults with intellectual disabilities are not only interested in 

and able to work, but should be employed in fully integrated settings at or above the standard 

minimum wage. For a society that fosters democracy, this makes good sense. 
30 The President's Committee for People with Intellectual Disabilities

If these are the expected outcomes, then we need to conduct periodic examinations of our 

funding decisions and patterns, including Medicaid funding patterns, which lead to vocational 

training, work experience and transition into employment for people with intellectual disabilities 

in the American workforce. There are funding patterns that continue to exist, which tend to limit 

the employment opportunities of people with intellectual disabilities. These funds are often not 

blended for maximum effectiveness and efficiency. 

Many of the funding patterns are archaic, based on myths and faulty beliefs about people 

with intellectual disabilities that existed many decades or centuries ago. People with 

intellectual disabilities are full citizens in our nation and are deserving of truly proper and 

acceptable treatment as Americans living in a modern civilized society. The funding 

decisions and patterns 

for education, transition, rehabilitation and employment need to be evaluated and improved for 

the benefit of our citizens with intellectual disabilities. 

When considering the changing demographics of the general workforce, it is apparent that the 

economy will need available workers. Employment for persons with intellectual disabilities is 

sound practice and must be supported by clear policies at the local, state and federal levels that 

encourage work for all. For persons with intellectual disabilities, the benefits of entering the 

labor market are clear for the individual as well as for the economy. 

What is not apparent is that when persons with intellectual disabilities enter employment, they 

often free up an additional worker — the family member who has served as caregiver. For 

family caregivers, the indirect benefit to employment of their disabled family member is their 

own increased family income, expanded personal networks, and increased self worth and value 

in the market place. 

Not only from a public policy perspective, but also from an advocacy perspective, employment 

allows a person to participate in community activities and create options for long-term financial 

stability through increased savings. Without a means of generating income, individuals with 

intellectual disabilities have limited freedom. A long-standing challenge is to develop interests 

and skills early in the educational experience of students with intellectual disabilities. 

Experiential learning has been shown to be an effective educational strategy for all students. 

The successes of the school to work activities have shown that all students can learn by doing. 

For students with intellectual disabilities, there is a clear indication that if employment is viewed 

as an option early, the likelihood of entering the workforce is considerably greater. 

"Numerous studies have documented that if a person with an intellectual 

disability has a work experience in high school, he or she is much more

likely to be working five years after leaving school than those who do not." 

 William Kiernan 

Director, Institute for Community Inclusion 
The President's Committee for People with Intellectual Disabilities 31

Lest there be any doubt about a ready and willing to work perspective, one only has to ask a 

person with a disability what their perspective is about work. Michael Rogers, a selfadvocate and member of the PCPID Subcommittee on Assistive Technology and 

Information, noted: 

"We have to change the beliefs of people with disabilities that they 

cannot work There are very few of us who actually do work. If you hang 

around people who say you can't do anything, guess what? You can't do 

anything!" 

The same sentiment expressed by Michael Rogers has been reported numerous times by the 

National Council on Disability (NCD) through their Harris Poll surveys on employment of 

persons with disabilities. There is an interest and commitment to work, but at times not a clear 

policy or practice path into the general labor force. Students with intellectual disabilities who 

are exiting school should transition to employment. For the more than 1.2 million persons with 

disabilities served in day and employment services nationally, the considerable strength of this 

untapped labor force remains an opportunity for employers. Persons with intellectual 

disabilities can, and must, be part of an economic engagement strategy that responds to our 

labor shortages in the coming years. 

Another significant barrier to integration in the wider community is lack of control of 

resources. People with intellectual disabilities and their families need control of the resources 

they receive from public agencies (and upon which they depend) to address fundamental issues 

of housing, transportation, technology and the production of private income and savings. Given 

the strong movement for increased consumer direction and greater economic self-sufficiency, 

employment, increased earnings, and capacity to develop longer term ways of supporting one's

self through personal savings are all part of the future for persons with intellectual disabilities. 

Most adults with intellectual disabilities are capable and interested in working and earning an 

income and would like to save some of their earnings. However, only a small number of adults 

with intellectual disabilities are currently employed. Of this group, most are employed only 

part- time or temporarily, and many earn wages that are lower than the nation's minimum 

wage. As a consequence, they are unable to generate sufficient income to open a savings 

account. Persons who are poor can be made even poorer by the continuing threat of 

government taking away benefits before they have a chance to succeed. 

Thus, there is a need to maintain and improve the existing social-economic safety net, which 

Americans with intellectual disabilities and their families can grasp and hold on to in order to 

survive from day-to-day. The current social safety net must continue. Understandably, adults 

with intellectual disabilities need to gain full employment to achieve a satisfactory sense of 

security. They also justifiably seek the opportunity to build assets to an adequate level. The 

desires of persons with intellectual disabilities are like those of any American citizen. Given the 

social-economic safety net, plus a solid chance to succeed, such individuals and their families 

will be able to survive and, hopefully, contribute to America in many ways in the future. 
32 The President's Committee for People with Intellectual Disabilities

As is the case for those without disabilities, long-term financial planning strategies for persons 

with intellectual disabilities are crucial. Financial stability, as one gets older, often requires 

early planning and creating assets that will allow for some degree of independence from public 

supports in later years. Planning for retirement for the general population has resulted in a 

variety of products and mechanisms available for personal investment. This has also been 

extended to parents wanting to save for their children's college education. Providing 

opportunities for similar long range financial planning for people with intellectual disabilities is 

becoming more essential. 

The interest from a public policy perspective is the development of programs that reduce 

dependence on public assistance now and in the future. The development of strategies that will 

allow persons with intellectual disabilities who are economically disadvantaged to set aside 

assets for future use, while preserving those services and supports that are essential now, is a 

shared concern. If we do not provide some creative options for families, the difficulty of public 

funding to meet the growing needs of this population is likely to become a serious problem in 

the future. The need for more effective integration of services, supports and resources is 

apparent. 

At the federal level, initiatives must allow for the blending of resources; at the state level, 

agencies must consider how mandates for comprehensive services leading to employment are 

structured; and at the local level, resources must be brought to the table so that persons with 

intellectual disabilities can enter and remain in employment. It is evident that: 

"To create a new system will require a re-design that relies on the 

creation of new tools and structures. They [tools and structures] include 

fiscal intermediaries, where a blended and targeted amount of dollars is 

deposited and assistance provided in complying with all applicable 

federal and state laws, as well as reporting requirements; independent 

assistance that is conflict of interest free to help with planning and 

implementation; and, finally, creative and personal individual budgets 

that accurately reflect and help purchase hopes and ambitions for 

achieving the American dream that individuals with disabilities possess." 

 Thomas Nerney 

President, Center for Self-Determination 

One exciting new development based on the waiver authority of the Social Security 

Administration (SSA) was announced in the Federal Register on February 5, 2004. It will 

allow individuals who enter employment to set aside some of their earnings in a savings 

account. In these instances, the individual will be able to retain earnings, gradually reduce cash 

benefits, and preserve some of these earnings in an asset development account as a form of 

support in retirement years. For the Centers for Medicare and Medicaid Services (CMS), the 

development of comprehensive employment options, as presented under their Medicaid 

Infrastructure Grants, will allow continued access to health care until the individual is able to 

secure such benefits through the workplace. 
The President's Committee for People with Intellectual Disabilities 33

Flexibility in the use of the waivers will allow states to design a system that recognizes the 

economic environment in the state, the general labor force needs and the support of the 

individual with intellectual disabilities when entering employment. The dual waiver would be 

managed collaboratively, but streamlined in the application and approval process by both CMS 

and SSA.' The dual waiver holds great promise for improving community-based services for 

people with intellectual disabilities and should be promoted nationwide. 

In addition to the dual waiver, it is equally important to create a "Qualified Disability Savings 

Account" (QDSA) that would provide incentives for individuals with intellectual disabilities, 

and their families, to participate in long-term planning and savings. The QDSA would offer a 

savings plan with tax deferred earnings and not count as an asset in determining eligibility for 

SSI and Medicaid. The funds could be used to supplement, not supplant, government benefits 

for access to technology, transportation, health care, and continuing education and training. 

Similar to a "529 plan"--a college tuition savings plan--the QDSA would provide tax deferrals 

on the income from the account and income tax disregards that would help families with 

children with intellectual disabilities respond to lifetime needs for services and support. 

Experts have advised us that there is presently no vehicle that educates and encourages families 

to do long range planning and saving specifically for services for someone with disabilities. 

The Qualified Disability Savings Account would provide such an incentive, with money 

targeted specifically for use by the person with disabilities, which would not exclude them

from government benefits and services. Another unique aspect to this account is that the 

distributions can be made only to third parties for payment of services or products that are for 

the sole benefit of the qualified beneficiary. 

The PCPID urges the use of an Individual Development Account-like instrument to encourage 

savings by persons with intellectual disabilities. In 1998, the Assets for Independence Act was 

passed to encourage asset accumulation and self-sufficiency for low-income families. These 

trust or custodial accounts were specifically designed for the purchase of a first home, college 

savings, or starting a business. Individual Development Accounts (IDAs) are comprised of the 

participant's savings from earned income, and are matched by deposits of up to eight dollars for 

each dollar saved.32 The goal was to encourage the participants to develop strong habits for 

saving money. 

Persons with intellectual disabilities have not historically used IDAs because of the fear of 

losing their benefits. Building on the dual waiver recommendation, the IDA-like instrument 

would offer an opportunity for people with intellectual disabilities to save for personal choices, 

based upon their own needs. These would include, for example, the purchase of assistive 

technology tools for uses that are personal or recreational in nature. 
Any action plan to promote and support asset development for persons with 

intellectual disabilities will require the following: 

 More flexibility in federal regulations regarding countable assets in both 

eligibility determination and continuation of service delivery.

 Recognition of the need to have long-term plans for asset development, thereby 

creating opportunities for shared resource allocation in later years (individual and 

public partnership). 

 Establishing new ways of linking federal resources at the state and local levels to 

address issues of increased employment options through modification in regulations 

and rules governing use of funding and eligibility determination through special 

waivers, model demonstrations, systems change and flexible financing. 

America applauds the efforts of the Administration to swiftly implement the recommended list 

of actions for employment of people with disabilities outlined in the New Freedom Initiative. 

We realize that what relates to people with disabilities includes individuals with intellectual 

disabilities. The New Freedom Initiative includes numerous actions, including the following: 

"The full enforcement of the Americans with Disabilities Act, promoting 

understanding and use of tax incentives to promote the hiring of people with 

disabilities, promoting best practices to enhance employment opportunities for 

people with disabilities, promoting the federal government as a model employer of 

people with disabilities, reaching out to people with disabilities who have never 

had the opportunity to work before, reducing the unacceptably high rate of

unemployment among people with disabilities, and other areas pertaining to 

employment of people with disabilities." 

These actions are also of enormous significance to citizens with intellectual disabilities and 

their families. 

34 The President's Committee for People with Intellectual Disabilities
The President's Committee for People with Intellectual Disabilities 35

1. Authorize a streamlined process and accelerated timetable for states to secure approval of 

a dual waiver through the Social Security Administration and the Centers for Medicare and 

Medicaid Services that provide incentives to work, and accumulate assets for individuals

with intellectual disabilities without losing their eligibility for benefits. 

2. Propose the establishment of Qualified Disability Savings Accounts (QDSAs) to 

encourage individuals with intellectual disabilities and their families to participate in longterm

planning and savings, which will advance personal and economic freedom. Moreover, a

QDSA would not exclude a person from receiving government benefits. 

3. Explore the structure of current Individual Development Accounts (IDAs) to determine 

whether they would require modification for qualified persons with intellectual disabilities to

use as a savings account. Expand the opportunities to save for purposes based upon an individual's

own needs without losing benefits. 

4. Establish a strategic partnership with the U.S. Departments of Labor, Education, 

Transportation and Commerce, the Centers for Medicare and Medicaid Services, the Social

Security Administration, the Equal Employment Opportunity Commission and the Small

Business Administration to promote employment of people with intellectual disabilities. In 

concert with the PCPID, these eight federal agencies have the expertise and experience to

leverage current employer relationships to stimulate new investment and support of 

individuals with intellectual disabilities in the workplace. An appropriate agency, like the

Department of Commerce or Labor, should assume the leadership role in convening five forums

concerned with employment of people with intellectual disabilities. 

Forum 1: Convene a forum of small business leadersto promote a better understanding of the

strengths of people with intellectual disabilities as employees and to discuss and resolve

current issues concerned with employment of people with intellectual disabilities in small

business establishments. 

Forum 2: Convene a forum of large business leaders to promote a better understanding of the

strengths of people with intellectual disabilities as employees and to discuss and resolve

current issues concerned with employment of people with intellectual disabilities in large

business establishments. 

Employment and Asset Development 

Recommendations 
36 The President's Committee for People with Intellectual Disabilities

Forum 3: Convene a forum of human resources leaders to discuss and resolve 

current issues concerned with employment of people with intellectual disabilities, 

including appropriate announcements for jobs, appropriate application forms for 

employment, appropriate techniques for recruitment and selection of employees, 

appropriate preemployment education and on-the-job training opportunities for 

improvement of performance by employees with intellectual disabilities, and other 

areas as may be identified. 

Forum 4: Convene a forum on network capacity building, at the local level, with 

voluntary organizations for developing knowledge and skills for individuals and families 

on how to enter the job market and develop desirable personal contacts and supports. 

Forum 5: Convene a forum of leaders from the transportation industry, advocacy 

organizations for people with intellectual disabilities, rehabilitation service

organizations and federal agencies to develop initiatives targeted at improved access to 

transportation systems by people with intellectual disabilities. Access to transportation is 

pivotal to the employment, medical and health care, and education of people with 

intellectual disabilities. 
"With his New Freedom Initiative, President Bush has placed a special priority 

on removing the barriers that face people with disabilities. Longterm 

commitment to this goal is essential because the barriers that stand in the way 

of equal access are deep-rooted. They can be found throughout our health 

care, transportation, housing and education systems and elsewhere." 

"At HHS, we have a special responsibility to help remove barriers to 

community integration. Too often, people with disabilities have been forced to 

live in institutions, many times because the services that would enable them to 

live in their communities are not available. We need to help provide for those 

services, and at the same time, we need to support the many informal 

caregivers, the family and friends of people with disabilities, who dedicate 

themselves to providing the informal help with routine daily life in the 

community." 

Tommy G Thompson

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

"For beneficiaries who leave the SSI rolls, many of whom are persons with 

intellectual disabilities, only 0.2 of one percent leave the rolls voluntarily." 

Martin H. Gerry

Deputy Commissioner, Disability and Income Security Programs

Social Security Administration

"I believe today, as I believed over a decade ago, as a co-author of the 

Americans with Disabilities Act, that accessibility in transportation is a civil 

right." 

Norman Mineta

Secretary, U.S. Department of Transportation

FAMILY SERVICES AND SUPPORTS 

The President's Committee for People with Intellectual Disabilities 37
38 The President's Committee for People with Intellectual Disabilities

They have also persisted in seeking suitable and dependable respite care, self advocated for 

meaningful educational and employment experiences, and demanded their rights to safe and 

affordable housing and community integration. Stigma and discrimination exacerbate the 

indignities felt by these individuals and families, perhaps more so by those enmeshed in 

poverty. Changing this paradigm for families requires far greater collaboration, integration, 

coordination, and accountability at all levels of decision-making and service delivery. We must 

address the "personal" needs of the individual with an intellectual disability as well as the 

"collective" needs of the family. The Committee has identified three critical areas that will help 

to chart a new course for families: personal health and mental health care, respite care for 

families and caregivers, and access to safe and affordable housing. 

Personal health and wellness is essential for achieving and sustaining quality of life. The 

Surgeon General's Report, Closing the Gap, released in 2002," identifies multiple challenges 

that impact the quality of life for people with intellectual disabilities. Despite the fact that 

people with intellectual disabilities live longer, their life span still is shorter than the average 

person. Among the vast array of contributing factors cited for these health disparities are a 

shortage of adequately trained health professionals to care for persons with intellectual 

disabilities and disincentives in Medicare, Medicaid, and third party payer reimbursements. 

Mr. President, there should be equal access to quality care by all who need it. Efforts to 

overcome these challenges will require construction of a more responsive system of care that 

begins with improved attitudes and up-to-date information. Also important to a more 

responsive system of care is appropriate training of health professionals to manage the medical, 

psychiatric and dental health needs of children and adults with intellectual disabilities.

Too often, it is the standard, rather than the exception, for families of people with intellectual 

disabilities to have to navigate an uncharted course across multiple systems to access needed 

services. Armed with only limited information, most of these families face a myriad of obstacles 

and barriers. They endure long waiting lists for services, must decipher and respond to 

conflicting program eligibility requirements, and wade through substandard care experiences to 

find scarce quality health and mental health care. 

"Our focus has been on looking across the life span at solutions to improve 

the quality of life for people with intellectual disabilities and their families. 

Families of children with disabilities need supportive options to access 

quality health and mental health care. Perpetual poverty and hopelessness 

should not be a prerequisite." 

Brenda A. Leath

Chair, PCPID Subcommittee on Family Services and Supports
The President's Committee for People with Intellectual Disabilities 39

Other critical steps must focus on the elimination of financial and non-financial disincentives. 

Attention must be given to the observations of self-advocates and their families that too often 

some providers shy away from including people with intellectual disabilities in medical and

dental practices. Such claims need to be examined and resolved. As these issues are addressed,

emphasis must be placed on decreasing the incidence of preventable causes of intellectual

disability before and after birth through prevention, early detection, and treatment. 

We must also relieve restrictions for maintaining Medicaid eligibility for persons with 

disabilities when family members work. Under current laws, families of persons with disabilities 

who need Medicaid support also must comply with household income and asset caps in order for 

their child to continue receiving Medicaid. This requirement prevents a mother, father, and 

siblings from earning adequate wages and saving any portion of their earnings. Essentially, they 

are being penalized for protecting their child's (or family member's) Medicaid eligibility and 

coverage. 

Providing adequate supports to the family is critical. Respite care is the most frequently 

requested family support service. It provides occasional relief to families who care for loved 

ones with intellectual disabilities. For these families, care giving is often a lifelong 

responsibility. A University of Colorado34 study determined that: 

 2.79 million of the 4.56 million people with developmental disabilities in the United 

States in 2002, many of whom were persons with intellectual disabilities, were 

receiving residential care from family members.

 Of that group, 25 percent lived with family caregivers older than 60 years. 

Another report indicated that 71,922 persons with developmental disabilities were on formal 

state waiting lists for residential services in 2000.35

Although respite care has been shown to help sustain family stability, improve family 

caregiver health and well-being, and avoid out-of-home placements, it remains in critical

short supply in most states. This is due, in part, to a lack of qualified, trained providers and 

limited resources, eligibility requirements, geographic barriers, cost, and a lack of culturally 

sensitive programs. 

The result has been the perpetuation of an unresponsive, duplicative, and fragmented system

that families often find impossible to navigate. Viable solutions require coordinated systems 

and blended funding streams for families across the life span. Such an approach, nationally, 

would facilitate easy access to an array of affordable, quality respite services for families of

people with intellectual disabilities. 

Americans have the right to safe and affordable housing. The need to develop diverse 

independent living options and opportunities will become increasingly critical as caregivers 

and people with intellectual disabilities age and caregivers reach the ends of their lives. 
40 The President's Committee for People with Intellectual Disabilities

Housing programs will need to develop new rental and purchase options that provide people 

with intellectual disabilities with opportunities to transition into the community. Such programs 

will need to balance eligibility criteria and juxtapose them against other programs that offer 

support to this population. 

In preparation for the increased need and demand for adult independent living arrangements, 

community-based demonstration initiatives should be considered a viable option for developing 

housing models that offer supportive living environments. Such programs should also 

incorporate independent living training activities. Home and community-based waivers should 

be considered as one of several mechanisms to support program designs. 

Improving the quality of life for people with intellectual disabilities requires a focus on the 

personal and collective needs of individuals and families, as well as coordination and provision 

of comprehensive support services that respond to individualized needs. Families must be 

provided with culturally competent, age- and gender-specific support, based on time-sensitive 

assessment of psychological, medical, social, and behavioral needs. 

The Committee is aware of and pleased with the efforts of the Administration to swiftly 

implement the Olmstead Decision. In addition, as part of the New Freedom Initiative, the

Administration has proposed a $1.75 billion initiative through 2009 (the "Money Follows the 

Individual" Rebalancing Initiative), and is seeking to promote home ownership and expand 

rental housing options. But, there is no single solution or simple answer. Access to quality 

health and mental health care, respite care, and affordable housing requires state and federal 

commitments and investments that cut across agency boundaries and professional disciplines. 

A multi-faceted and system-wide transformation process is needed. This process, as

previously stated in the Section entitled "Employment and Asset Development," should: 

 Meld multiple waivers, including SSI and Medicaid, into one seamless set of incentives 

for work and self-employment, safe and affordable housing, and control over 

transportation. 

 Assess the impact of waiver bundling on such issues as individual choice, access to 

community-based and family support services, affordable housing, transportation, 

access to health care and needed technology, and earned income and asset accumulation 

through the use of state demonstration projects. 
 Employ a special public-private partnership initiative as a vehicle to enhance the preservice and in-service training of physicians, dentists and other health care professionals 

to provide care to people with intellectual disabilities in community settings. This 

partnership should comprise various federal agencies and the leadership of major health 

professions associations and advocacy organizations. It should include physician 

incentive options for expanding patient panels to include people with intellectual 

disabilities and to establish provider recognition and awards for exemplary performance 

in medical and health care management of people with intellectual disabilities. 

 Allocate funding to support focused research designed to achieve parity in health care 

for persons with intellectual disabilities. Such research should examine provider 

attitudes, behaviors, practice patterns, specific reimbursement barriers, and new 

financing proposals. 

 Provide adequate resources for demonstration initiatives designed to assess the efficacy 

of respite care service approaches that include faith-based, community-based, and 

employer- based options. 

The President's Committee for People with Intellectual Disabilities 41
42 The President's Committee for People with Intellectual Disabilities

1. Authorize a streamlined process and accelerated timetable for states to secure approval of 

a dual waiver through the Social Security Administration and the Centers for Medicare and 

Medicaid Services that provide incentives to work and accumulate assets for people with 

intellectual disabilities without losing their eligibility for benefits. This recommendation is 

repeated because it was developed by both the Subcommittee on Family Services and 

Supports and the Subcommittee on Employment and Asset Development. 

2. Establish an Interagency Task Force on Developmental Health that is facilitated by the 

Centers for Disease Control and Prevention with the PCPID, and includes representatives from

the Centers for Medicare and Medicaid Services, the Administration on Developmental 

Disabilities, the Bureau of Health Professions, the Agency for Health Research and Quality, 

and private sector organizations. 

3. Commission longitudinal studies to: 1) design new financing options and assess their 

impact on service access and delivery to persons with intellectual disabilities, and 2) 

examine provider attitudes, behaviors relative to inclusion of persons with intellectual 

disabilities in community-based and private practice settings. 

4. Relieve restrictions for meeting Medicaid eligibility for persons with disabilities when

family members work by raising the income threshold for Medicaid eligibility. 

5. Convene a "White House Conference on Respite Care" to identify model service 

approaches that benefit families with members with intellectual disabilities. 

6. Conduct housing demonstration projects that include support services for adults 

transitioning from in-home dependent care to independent living environments. 

Encourage the Department of Housing and Urban Development and the Centers for 

Medicare and Medicaid Services to collaborate with states to test affordable and accessible

community housing models that promote independence and offer supportive services when

needed. 

7. Support and promote respect for the civil rights, liberties and dignities of people with 

intellectual disabilities, which need to be respected in the environment of anti-terrorism 

tactics and strategies as developed and practiced by the Department of Homeland Security and

related agencies. 

Family Services and Supports Recommendations
"New technologies are opening opportunities for work, community living, 

and independence for those with even the most severe disabilities. The New Freedom 

Initiative commitments will help jumpstart research in assistive and universally 

designed technologies and will help ensure that Americans with disabilities have 

access to those technologies." 

New Freedom Initiative

2002

ASSISTIVE TECHNOLOGY AND 

INFORMATION 

"Technology helps level the playing field for persons with intellectual disabilities at 

home, at school and in the workplace." 

Claudia Coleman

Chair, PCPID Subcommittee on Assistive Technology and Information

The President's Committee for People with Intellectual Disabilities 43

People with intellectual disabilities substantially lag behind all other groups in our society in 

the utilization of technology. Technology is a critical means to enhance productivity, 

maintain independence, and expand quality of life choices. For people with intellectual 

disabilities, technology can be the critical difference between living at home and nursing 

home care, unemployment and work opportunity with advancement potential, freedom to 

move about independently and dependence on caregivers for direction. In the near future, 

exciting developments, such as improved voice recognition systems with one-word 

commands for performing many tasks, and advances in software development permitting 

creation of assistive devices to adapt simultaneously to the learner's personal cognitive style 

and to the learner's environment, are likely. 

These and other fundamental advances in micro-electronics, wireless technology, and software 

development have the potential to significantly reduce income maintenance and long-term care 

costs to government at the federal and state level, as well as lower out-of-pocket expenses for 

individuals and families. There are unique challenges, such as volume, scale and cost, that must 

be overcome if persons with intellectual disabilities are going to have access to assistive 

technology. 

A strong federal role is critically needed to address these challenges and to stimulate the 

development of strong partnerships between technology companies, research universities, and 

consumers with intellectual disabilities and their families and service providers. Federal 

leadership is needed to stimulate research, development, commercialization, and dissemination 

of cognitive technologies for people with intellectual disabilities in the home, at school, in the 

workplace, and to promote health and well-being.
44 The President's Committee for People with Intellectual Disabilities

The Committee applauds the focus on assistive technology in the New Freedom Initiative. It 

seeks to speed new technologies to individuals with disabilities, expand the U.S. assistive 

technology industry, and boost exports of U.S. products and services. Already, the Department 

of Commerce is working with the Assistive Technology Industry Association (ATIA), industry 

trade associations, and disability organizations to provide data analysis to increase export 

promotion opportunities, provide technical manufacturing guidance, and catalog trade barriers. 

Other activities in which the Department of Commerce is engaged include reaching out to 

industry through forums and roundtables to encourage sharing of manufacturing information 

among industry and trade associations; facilitating the development of measurement and private 

sector standards for assistive technology devices; and raising awareness of sources of technical 

assistance, product ideas and patented inventions. 

The President's Committee also believes that all of these activities should include a focus on 

assistive technology for persons with intellectual disabilities, and that this inclusion should take 

place in a systematic and comprehensive manner. The Committee believes it is important to 

create a network of research centers of excellence in technology and intellectual disabilities. 

 The Centers would be located in multidisciplinary, university-based settings and 

closely linked functionally to commercial enterprises in technology. 

 Core disciplines would include computer science, electrical, computer, and 

biomedical engineering, psychology, rehabilitation, and special education. 

 Centers would engage with consumers with intellectual disabilities, their families, 

service providers, employers and schools to facilitate the development and 

dissemination of viable new technologies designed to increase the social, economic, and 

educational participation of people with intellectual disabilities. Centers would also 

promote the development of financing strategies to increase access and use of current 

and new technologies. 

The following agencies would need to closely cooperate to develop these centers: the 

Department of Commerce, including its Technology Laboratory; the Department of Education, 

including the National Institute on Disability and Rehabilitation Research (NIDRR) and the 

Office of Special Education Programs; the Department of Health and Human Services, 

including the Administration on Developmental Disabilities (ADD) and the National Institute of 

Child Health and Human Development (NICHD), which is a part of the National Institutes of

Health (NIH); the Department of Labor and the Department of Transportation. 
These centers would seek to stimulate the resources and expertise and the crucial participation, 

currently lacking, among relevant engineering and computer science faculties in institutions of 

higher education. The centers would emphasize and facilitate interaction between the 

commercial technology industry and these faculties in developing new products, devices, and 

technologies for people with intellectual disabilities. This, in turn, would stimulate technology 

development and reduce the rapidly growing "digital divide" in our country. 

Advances in technology are already beginning to make a difference in the lives of people with 

intellectual disabilities. In 1997, AbleLink Technologies, located in Colorado Springs, received a 

call from a Colorado School District's transition office. Steve, a student-employee with an 

intellectual disability, was having problems with his warehouse job at a Target store. He had 

difficulty remembering the things he had to do, and was afraid he would lose his job. The 

transition job coach provided Steve with a Pocket Coach, recorded instructions for the eight 

different tasks required for the warehouse position, and set the Pocket Coach to play back an 

audio and visual "to do" list. In three weeks, Steve was able to repeat verbatim each of the eight 

task instructions, and said that he did not need his Pocket Coach any more. The store also gave 

Steve his first raise. AbleLink's "Pocket Coach" is a personal assistant with a software program

that runs on the Windows operating system. The Pocket Coach provides an easy-to-use interface 

for recording and retrieving a series of step-by-step audio and video instructions guiding 

individuals at their jobs, in performing activities of daily living, or in prompting for other tasks. 

(Information on AbleLink's Pocket Coach is available at: http://www.ablelinktech.com/)

The President's Committee for People with Intellectual Disabilities 45
1. Support the establishment of a network of "Research Centers of Excellence in 

 Technology and Intellectual Disabilities" to engage in research and development on 

new technologies to improve the quality of life, wellness, and independent living of 

 people with intellectual disabilities. 

2. Encourage White House leadership to convene a meeting of relevant agencies, including 

the Departments of Labor, Education, Transportation, Commerce and the Equal 

Employment Opportunity Commission, to promote access to technology which 

advances the employment opportunities of people with intellectual disabilities. 

3. Convene a forum, coordinated by the PCPID, to identify new and improved strategies to 

stimulate manufacturers' investment in design and development of products that 

advance independence and the productivity of people with intellectual disabilities. The 

PCPID urges that a major emphasis be placed on the creation of a common architecture 

in the development of assistive technology. In addition, emphasis should be placed on

the creation of synergy between government funding and assistive technology access 

and use in the home, workplace, and community. 

4. Encourage the Departments of Education and Labor to fund a series of demonstration 

projects that emphasize public and private sector coordination and investment. 

Assistive Technology and Information 

Recommendations 

46 The President's Committee for People with Intellectual Disabilities
The President's Committee for People with Intellectual Disabilities 47

Maclaen Burningham, 19 years old, graduated from high school in 2002. He lives with his 

family in a rural town in Montana. Like many students in Montana who receive special 

education services, Maclaen did not have the option to attend school past age 18. Fortunately, 

his principal believed that part of his education should be community-based and lead toward 

employment. During his junior and senior years, Maclaen had a variety of work experiences. 

Through these experiences, Maclaen, his family and his Individual Education Plan (IEP) team

learned more about his skills and the supports and training he would need to maintain 

employment. The team's goal was to place Maclaen into a long-term, paid job before 

graduation and to develop a coordinated plan to maintain employment. 

There is no single path to freedom. Despite multiple challenges, the following three 

individual stories of perseverance describe what is possible for still too few Americans with 

intellectual disabilities. 

The recommendations of the members of the PCPID provide a clear voice and vision for 

change in our policies and practices. These recommendations serve as a road map to guide 

individuals, families, communities and government to create the path to personal and

economic freedom. Opportunities to earn income and grow assets will fundamentally alter 

access to affordable housing, health care and education. 

Transition from School to Employment 

A Success Story 

Road Map to Success 
Since Maclaen did not have access to many supports and services after school, developing a 

solid job for him was critical. While Maclaen was eligible for Developmental Disabilities 

services, there was a long waiting list for both supported employment and supported living 

services (he was offered a place in a community rehabilitation program, but the family 

declined). Vocational Rehabilitation provided some time-limited funding, which did help the 

school with job development. His only long-term supports, then, were his family and Social 

Security Administration (SSA) work incentives. Maclaen's team knew that if he was working 

when he graduated, he would be eligible for an SSA Plan for Achieving Self-Support (PASS). 

The PASS would serve as the primary funding source to purchase follow-along supports critical 

to his continued success in employment. 

Since graduation, Maclaen has been employed in a combination of jobs with hourly wage ranges 

from $5.15-$6.00. To provide his follow-along supports, he hired his retired special education 

teacher. His family transports Maclaen to work since he doesn't drive and there is no public 

transit. His current vocational goal is to pursue a career as a literacy tutor. In addition to paying 

for his follow-along services and transit, the PASS will fund tutoring to enable him to increase 

his literacy skills. 

Today, Maclaen tutors students for the school district. He recently received an award for his 

services and the local newspaper featured his work. He also has part-time employment at both 

the auto glass store and the public library. He works an average of 15 hours/week, but has a goal 

of working full-time. His mom monitors his PASS and serves as his mentor. She negotiated his 

current job that allowed him to move from janitorial duties to a Literacy Coach position. 

Maclaen directs his follow-along supports by asking for assistance when needed. 

48 The President's Committee for People with Intellectual Disabilities
Michael McHugh, 38 years old, has a moderate intellectual disability. At three years of age, he 

was in a car accident that led to cerebral palsy. He struggles with a stiff, unsteady gait and leans 

on a walker to accomplish all tasks. He has no reading or math skills, and because he has 

delayed speech, it takes a lot of effort for a stranger to understand him. Michael attended 

special education classes, and prior to starting his own vending machine business, he worked at 

a community rehabilitation program. He receives Social Security Disability Insurance (SSDI) 

and very recently received some Vocational Rehabilitation funding support. 

Michael lives with his mother in a rural area in southwest Michigan. Now in his third year of 

business, Michael J's Vending presently operates seven pop machines and two snack 

machines at six locations with strong potential for four more machines at two additional 

locations. Michael hired an assistant through his individual service budget by utilizing a fiscal 

intermediary. His employee transports him and assists with positioning products so that 

Michael can fill all of the machines. In addition, Michael sorts coins and makes his bank 

deposits, purchases snacks at an outlet, and greatly enjoys his business lunches at his favorite 

restaurants. Michael projected an average monthly income in 2003 of more than $200.00, 

significantly greater then the average of $5.00 per month working at the community 

rehabilitation program. 

Self-employment seems to fit Michael's needs because both he and his mother wanted to

maintain an active lifestyle not tied to a schedule or routine, as was offered by the community 

rehabilitation program. A trusting relationship with an Allegan County Community Mental 

Health (ACCMH) Social Security benefits specialist provided the foundation that led to further 

confidence building by Michael and his mother. 

Self Employment 

A Success Story 

The President's Committee for People with Intellectual Disabilities 49
During the summer of 2000, ACCMH staff helped develop a business and marketing plan with 

three-year projections. Consulting work with Griffin-Hammis Associates provided expertise in 

both business planning and the approval of a $14,000.00 PASS with the PASS Cadre office. 

Michael's PASS allowed him to purchase a van with a modified ramp. ACCMH assisted Michael 

in utilizing a fiscal intermediary to hire his own staff, and through funding support from

Vocational Rehabilitation, he purchased two used vending machines to expand his business. His 

coordination and strength have increased and Michael has also grown significantly in his 

confidence and sense of self-worth. He now chooses to close his own door, buckle his own 

seatbelt, and be involved in family conversations, and has been a paid co-presenter at six state 

conferences.

In 2002, Michael paid over $550.00 in sales taxes and purchased over $10,000.00 in inventory to 

contribute to the state and local economy. Michael has been able to surmount community 

barriers and become a participating and respected community member. He strives to live and 

work without S SDI monthly payments. The learning curve gained from supporting Michael has 

allowed ACCMH to assist five more people with intellectual disabilities to become business 

owners. 

50 The President's Committee for People with Intellectual Disabilities
Toward Personal and Economic Freedom

A Success Story 

Mia Peterson, 29 years old, has Down syndrome and exemplifies leadership and excellence. 

She grew up in Webster City, Iowa, with her family and graduated from Webster City High 

School in 1993. During high school, Mia was involved in cross-country running, theater and 

speech competition. Mia currently lives independently in an apartment in Ohio. She works at 

the Down Syndrome Association as the self-advocacy coordinator. She is also self-employed 

as a national co-facilitator of Stephen Covey's "Seven Habits of Highly Effective People." 

With her business, Aiming High, she speaks to groups across the country and sells her musical 

CD entitled, "I Am Here." Mia has lived in Ohio since 1997 when she started working for 

Capabilities Unlimited, Inc., as a co-editor and columnist for the Community Advocacy Press, a 

newsletter by and for people with intellectual disabilities. Mia has also taken courses at Xavier 

College to develop her communication skills and explore her career interests. 

Mia's professional interests and passion for self-advocacy extend to her many community 

activities and leadership positions. She currently serves on the National Down Syndrome 

Society's board of directors and chairs the organization's self-advocate advisory board; serves as 

a board member of her local YMCA; and on numerous local and state committees. She served as 

the first president of People First Ohio, on the National Youth Leadership Council, and as a 

board member for the Association of Persons for Supported Employment. In 2001, Mia became 

the first individual with Down syndrome to testify before a U.S. Senate committee regarding the 

impact of the ADA on her life. She partnered with Joan Medlen, a registered dietitian, to 

conduct a research study on nutrition for people with Down syndrome and received the National 

Down Syndrome Society Research Award for her contributions. Mia also enjoys running, 

swimming, bicycling, participating in church activities, corresponding with family and friends, 

and spending time with her boyfriend. Recently, she ran the five-mile leg of a marathon and 

carried the Olympic torch through Cincinnati in the 2002 Winter Olympics. 

The President's Committee for People with Intellectual Disabilities 51
We applaud the three success stories of our citizens with intellectual disabilities. They are 

wonderful examples of what can happen when individuals with intellectual disabilities are given 

the opportunity to succeed. However, we must not be misled by these three success stories into 

thinking that they are typically representative of people with intellectual disabilities, for they are 

not. Far too many Americans with intellectual disabilities are not even given the opportunities 

necessary to succeed. It is well to remember that faulty attitudes and erroneous myths continue 

to exist about people with intellectual disabilities. This is demonstrated by the fact that almost all 

citizens with intellectual disabilities currently are unemployed in our free and civilized nation. 

These success stories remind us of the possibilities that can exist for our citizens with

intellectual disabilities. This report provides us with examples of important ways to open doors 

that will lead to their success and full citizenship. Mr. President, we ask for your help in this 

matter. 

52 The President's Committee for People with Intellectual Disabilities
Executive Summary and 

Recommendations 

"Government likes to begin things — to declare grand new programs and causes and 

national objectives. But good beginnings are not the measure of success in government 

or in any other pursuit. What matters in the end is completion. Performance. Results.

Not just making promises, but making good on promises. In my Administration, that will 

be the standard from the farthest regional office of government to the highest office of the 

land." 

George W. Bush

Governor of Texas

June 9, 2000

The core ideas of the President's Committee for People with Intellectual Disabilities have grown 

out of one overarching conclusion. We have concluded that, historically, public assistance in 

exchange for enforced poverty and the absence of freedom is a bad deal — one that fails all 

parties to the arrangement: people with intellectual disabilities, their families and the American 

people. A great challenge before our government and society is to will a public safety net that

not only permits persons with intellectual disabilities to pursue economic and personal freedom, 

but also leads them to achieve it in a systematic way. This can only be accomplished in a 

culture that goes beyond mere toleration to one that warmly welcomes and appreciates persons 

with intellectual disabilities. This is our challenge, this is our "charge." 

A new road map is required, one that aligns a public rhetoric to desired outcomes. It needs to be 

based on the principles of the self-determination movement that has been evolving since 1993. 

These principles are: freedom to live a meaningful life in the community; authority over

dollars needed for support; support to organize resources in ways that are life-enhancing and 

meaningful; and responsibility for the wise use of public dollars.36

There are a myriad of issues that impact on the quality of life experienced by citizens with 

intellectual disabilities and their families. The Committee has special concerns relating to faulty 

attitudes currently held by the general public, particularly employers, affecting people with 

intellectual disabilities in our society. It is also concerned about the existence of a form of 

enforced poverty among citizens with intellectual disabilities that may be the result of certain 

well- intended public policies. 

The President's Committee for People with Intellectual Disabilities 53
TOur American citizens with intellectual disabilities need access to a complete range of health 

care services and supports from medical, dental and other health professional providers. Certain 

aspects of education in our nation need significant improvements to effectively prepare students 

with intellectual disabilities in academic, behavioral and vocational areas. Employment is a 

major problem area, with an unacceptable rate of 90 percent unemployment. Closely associated 

with this is the need for asset development and the opportunity for opening one's own savings 

account without the fear of loss of benefits for citizens with intellectual disabilities. At the same

time, we need to retain a social safety net since many people with intellectual disabilities may 

not ever be able to have sufficient assets to become totally independent. Special consideration 

needs to be given to control of resources by persons with intellectual disabilities and their 

families to ensure meaningful long-term development. Existing compartmentalized programs 

do not offer these persons control over resources. 

For successful community living for Americans with intellectual disabilities and their families, 

there is a need for assistive technology in education and employment, and increased availability 

of appropriate and adequate transportation and housing. Finally, the government needs to 

improve the way it assesses programs to arrive at better outcomes. 

Freedom is an American virtue. Its basic premise is that all people are created equal and 

"are endowed by their Creator with certain unalienable rights, among which are life, liberty 

and the pursuit of happiness."37 As a nation, we must ensure that these words do not reflect 

empty promises. Rather, these words must hold true to inclusion and opportunities to 

pursue the American Dream by all persons, including those with intellectual disabilities. 

Mr. President, the PCPID has noted the fact that this report to you arrives at the outset of the 

21st Century. This realization has permeated our thinking about matters of substance, style and 

presentation. Our document is neither a scholarly dissertation nor a detailed strategic plan. It is a 

road map to personal and economic freedom for a group of individuals and their families, for 

whom we share a common concern: "It is a Charge We Have to Keep." 

Public Awareness

1. The PCPID invites and encourages you, Mr. President, to participate as the Committee's 

spokesperson in a national campaign specifically targeted to school-age children and 

employers to change negative public attitudes toward people with intellectual 

disabilities. The campaign should include a variety of media, including public service 

announcements, print and television features, and a web directory to assist employers to 

identify individuals with intellectual disabilities who are seeking employment. The 

Committee is eager to collaborate and is prepared to partner with corporations that 

already have had positive experiences hiring individuals with intellectual disabilities. 

2. The Committee is partnering with the Special Olympics to change negative public 

 attitudes toward people with intellectual disabilities. 

54 The President's Committee for People with Intellectual Disabilities
Performance Management

1. Establish a strategic partnership with the Office of Management and Budget, an 

appropriate non-governmental agency, and with the PCPID and other relevant federal 

agencies. The partnership would create a set of practical performance measures for 

agencies that administer federal programs that have an impact on people with 

intellectual disabilities to hold them accountable for the advancement of outcomes that 

improve personal and economic freedom. These measures and performance indicators 

should be comprehensive, consistent, and complementary. 

2. Apply an enriched PART to 20 percent of the government's generic and disability 

specific programs each year, beginning in FY 2004, with follow-up recommendations to 

address poor performance, and an annual report to Congress on the status of the 

improved program performance and outcomes. 

3. Urge Congress to conduct at least annual oversight hearings in the House and Senate to 

assess cross-agency performance with the advancement of outcomes that improve 

personal and economic freedom for people with intellectual disabilities. Such joint 

hearings should extend beyond traditional lines of authority to embrace a holistic view of 

individual and family support that analyzes relationships among tax, finance, economic, 

education, health care, and workforce policies. 

Education and Transition from School to Work and Adult Life

1. Develop meaningful assessments and accountability by establishing an Intra-Agency 

Task Force, which would be facilitated by the U.S. Department of Education and include 

national experts, to provide ongoing guidance to states on universally relevant standards 

and appropriate assessments for students with intellectual disabilities under the No Child 

Left Behind Act. 

2. Support and promote the idea that the Jobs for the 21st Century initiative should improve

reading instruction, acquisition of reading skills, improvement in post-secondary 

outcomes and improvement in post-secondary employment opportunities for all 

individuals with intellectual disabilities. 

3. Develop relevant standards that apply to skills and competencies required in the work 

setting through a collaboration with the U.S. Departments of Education and Labor to 

apply the findings of the 1991 Secretary's Commission on Achieving the Necessary 

Skills (SCANS)." 

4. Support quality teacher training and professional development to help all teachers learn 

 to elevate the achievement of all students, including students with intellectual 

 disabilities. 

The President's Committee for People with Intellectual Disabilities 55
5. Increase post-secondary opportunities by providing opportunities for students with 

intellectual disabilities. 

6. Develop a seamless pre K-16 system of instruction and support to remove barriers that 

limit the ability of federal resources—including Social Security, Medicaid, special 

education, vocational education and other general education and human services resources—

to be pooled with state and local funds to support students with intellectual disabilities while in

high school, as they enter the workforce or post-secondary education. 

7. Foster community-based initiatives, as part of the Jobs for the 21st Century initiative, that

lead to improved employment and post-secondary outcomes for students with intellectual 

disabilities. 

Employment and Asset Development

1. Authorize a streamlined process and accelerated timetable for states to secure approval of 

a dual waiver through the Social Security Administration and the Centers for Medicare and 

Medicaid Services that provide incentives to work, and accumulate assets for individuals

with intellectual disabilities without losing their eligibility for benefits. 

2. Propose the establishment of Qualified Disability Savings Accounts (QDSAs) to 

encourage individuals with intellectual disabilities and their families to participate in longterm

planning and savings, which will advance personal and economic freedom. Moreover, a

QDSA would not exclude a person from receiving government benefits. 

3. Explore the structure of current Individual Development Accounts (IDAs) to determine 

whether they would require modification for qualified persons with intellectual disabilities to

use as a savings account. Expand the opportunities to save for purposes based upon an 

individual's own needs without losing benefits. 

4. Establish a strategic partnership with the U.S. Departments of Labor, Education, 

Transportation and Commerce, the Centers for Medicare and Medicaid Services, the Social

Security Administration, the Equal Employment Opportunity Commission and the Small

Business Administration to promote employment of people with intellectual disabilities. In 

concert with the PCPID, these eight federal agencies have the expertise and experience to

leverage current employer relationships to stimulate new investment and support of 

individuals with intellectual disabilities in the workplace. An appropriate agency, like the

Department of Commerce or Labor, should assume the leadership role in convening five forums

concerned with employment of people with intellectual disabilities. 

Forum 1: Convene a forum of small business leaders to promote a better understanding 

of the strengths of people with intellectual disabilities as employees and to discuss and 

resolve current issues concerned with employment of people with intellectual disabilities 

in small business establishments. 

56 The President's Committee for People with Intellectual Disabilities
Forum 2: Convene a forum of large business leaders to promote a better understanding 

of the strengths of people with intellectual disabilities as employees and to discuss and 

resolve current issues concerned with employment of people with intellectual disabilities 

in large business establishments. 

Forum 3: Convene a forum of human resources leaders to discuss and resolve 

current issues concerned with employment of people with intellectual disabilities, 

including appropriate announcements for jobs, appropriate application forms for 

employment, appropriate techniques for recruitment and selection of employees, 

appropriate preemployment education and on-the-job training opportunities for 

improvement of performance by employees with intellectual disabilities, and other 

areas as may be identified. 

Forum 4: Convene a forum on network capacity building, at the local level, with 

voluntary organizations for developing knowledge and skills for individuals and families 

on how to enter the job market and develop desirable personal contacts and supports. 

Forum 5: Convene a forum of leaders from the transportation industry, advocacy 

organizations for people with intellectual disabilities, rehabilitation service organizations 

and federal agencies to develop initiatives targeted at improved access to transportation 

systems by people with intellectual disabilities. Access to transportation is pivotal to the 

employment, medical and health care, and education of people with intellectual 

disabilities. 

Family Services and Supports

1. Authorize a streamlined process and accelerated timetable for states to secure approval 

of a dual waiver through the Social Security Administration and the Centers for 

Medicare and Medicaid Services that provide incentives to work and accumulate assets 

for people with intellectual disabilities without losing their eligibility for benefits. This 

recommendation is repeated because it was developed by both the Subcommittee on 

Family Services and Supports and the Subcommittee on Employment and Asset 

 Development. 

2. Establish an Interagency Task Force on Developmental Health that is facilitated by the 

Centers for Disease Control and Prevention with the PCPID, and includes 

representatives from the Centers for Medicare and Medicaid Services, the 

Administration on Developmental Disabilities, the Bureau of Health Professions, the 

Agency for Health Research and Quality, and private sector organizations. 

3. Commission longitudinal studies to: 1) design new financing options and assess their 

impact on service access and delivery to persons with intellectual disabilities, and 

2) examine provider attitudes, behaviors relative to inclusion of persons with 

intellectual disabilities in community-based and private practice settings. 

The President's Committee for People with Intellectual Disabilities 57
4. Relieve restrictions for meeting Medicaid eligibility for persons with disabilities when

family members work by raising the income threshold for Medicaid eligibility. 

5. Convene a "White House Conference on Respite Care" to identify model service 

approaches that benefit families with members with intellectual disabilities. 

6. Conduct housing demonstration projects that include support services for adults 

transitioning from in-home dependent care to independent living environments. 

Encourage the Department of Housing and Urban Development and the Centers 

for Medicare and Medicaid Services to collaborate with states to test affordable 

and accessible community housing models that promote independence and offer 

supportive services when needed. 

7. Support and promote respect for the civil rights, liberties and dignities of people with 

intellectual disabilities, which need to be respected in the environment of anti-terrorism

tactics and strategies as developed and practiced by the Department of Homeland 

Security and related agencies. 

Assistive Technology and Information

1. Support the establishment of a network of "Research Centers of Excellence in 

 Technology and Intellectual Disabilities" to engage in research and development on 

new technologies to improve the quality of life, wellness, and independent living of 

 people with intellectual disabilities. 

2. Encourage White House leadership to convene a meeting of relevant agencies, including 

the Departments of Labor, Education, Transportation, Commerce and the Equal 

Employment Opportunity Commission, to promote access to technology which 

advances the employment opportunities of people with intellectual disabilities. 

3. Convene a forum, coordinated by the PCPID, to identify new and improved strategies to 

stimulate manufacturers' investment in design and development of products that 

advance independence and the productivity of people with intellectual disabilities. The 

PCPID urges that a major emphasis be placed on the creation of a common 

architecture in the development of assistive technology. In addition, emphasis should

be placed on the creation of synergy between government funding and assistive 

technology access and use in the home, workplace, and community. 

4. Encourage the Departments of Education and Labor to fund a series of demonstration 

projects that emphasize public and private sector coordination and investment. 

58 The President's Committee for People with Intellectual Disabilities
References 

1. Americans with Disabilities Act (ADA), Public Law 101-336. (available at http://

www.usdoj.gov/crt/ada/adahoml.htm)

2. Individuals with Disabilities Education Act (IDEA) Amendments of 1997, Public Law 

105-17. (available at http://www.ed.gov/offices/OSERS/Policy/IDEA/)

3. Ticket to Work Program of the Ticket to Work and Work Incentives Improvement Act 

(TWWIIA) of 1999, Public Law 106-170). (available at http://www.ssa.gov/work/Ticket/

ticket info.html)

4. Olmstead v L.C, 527 U.S. 581, 119 S.Ct.2176 (1999). (available at http://

supct.law.comell.edu/supct/html/98-536.ZO.html)

5. New Freedom Initiative (NFI): Fulfilling America's Promise to Americans with 

Disabilities. (available at http://www.whitehouse.gov/news/freedominitiative/

freedominitiative.html)

6. Elementary and Secondary Education Act of 2001 (ESEA), Public Law 107-110, as 

reauthorized by the No Child Left Behind Act of 2001 (NCLB). (available at http:// 

www.ed.gov/policy/elsec/leg/esea02/index.html)

7. Rizzolo, M.C., Hemp, R., Braddock, D., and Pomeranz-Essley, A. (2004). The State of 

the States in Developmental Disabilities: 2004, University of Colorado, Coleman Institute 

for Cognitive Disabilities and Department of Psychiatry, Boulder CO (2004). (available at 

http://www.cu.edu/ColemanInstitute/stateofthestates/summary 2004.pdf)

8. Data on developmental disabilities is used when data specific to intellectual disabilities is 

not known or available. PCPID recognizes that data on developmental disabilities includes data

on intellectual disabilities as well as other populations with physical and mental disabilities. 

Although the terms developmental disabilities and intellectual disabilities are not 

synonymous, data on developmental disabilities can serve to reflect a close, although not an 

exact, estimate on data for intellectual disabilities. 

9. Source: Vicki Turnage, Advisor to People First of Alabama. 

10. Mission statement of the President's Committee for People with Intellectual Disabilities. 

(available at http://www.acf.hhs.gov/programs/pcpid/pcpid mission.html)

The President's Committee for People with Intellectual Disabilities 59
11. Statement of William Kiernan, Director of the Institute for Community Inclusion (ICI),

University of Massachusetts, Boston, from the unpublished proceedings of the PCPID Roundtable 

on Youth and Transition (September 2003).i 

12. Rizzolo, et al., supra. 

13. U.S. Department of Education, Twenty-Fourth Annual Report to Congress on the 

Implementation of the Individuals with Disabilities Education Act (2002). (available at 

www.ed.gov/about/reports/annuallosep/2002/index.html)

14. SRI International, National Longitudinal Transition Study: A Summary of Findings (1993). 

(available at www.sri.com/policy/cehs/publications/dispub/nits/nitssum.html)

15. Rizzolo, et al., supra. 

16. Social Security Administration, Annual Statistical Supplement, 2002, (2002). (available at 

http://www.ssa.gov/policy/docs/statcomps/supplement/2002/ and www.ssa.gov/policy/

docs/statcomps/supplement/2002/5d.pdf.)

17. Polister, B.H., Policies and Resources Related to Waiting Lists of Persons with 

 Mental Retardation and Related Developmental Disabilities (2002). Paper prepared at the 

University of Minnesota, College of Education and Human Development, Research and Training

Center on Community Living Institute on Community Integration. 

18. Rizzolo, et al., supra. 

19. Workforce Investment Act (WIA) of 1998, Public Law 105-220. (available at http://

www.doleta.gov/usworkforce/asp/wialaw.txt)

20. Centers for Medicare and Medicaid Services, U.S. Department of Health and Human 

Services, Real Choice Systems Change Grants Home Page. (available at http:// 

www.cms.hhs.gov/realchoice/)

21. Multinational Study of Attitudes toward Individuals with Intellectual Disabilities, Special 

Olympics (June 2003). (available at http://www.specialolympics.org/

Special+Olympics+Public+Website/English/Initiatives/Health Research/Research/ 

Multinational+ Study.htm)

60 The President's Committee for People with Intellectual Disabilities
22. What Happened to GPRA? A Retrospective Look at Government Performance and Results: 

Hearing Before the House Committee on Government Reform, 108th Congress, 1st Sess. 

(September 18, 2003) (statement of the Honorable Clay Johnson, III, Deputy Director for 

Management, Office of Management and Budget, Executive Office of the President). (available at

http://www.whitehouse.gov/omb/legislative/testimony/cjohnson/030918 cjohnson.html)

23. Memorandum from Thomas M. Reilly to the Performance Measurement Advisory Council 

(February 11, 2003). (available at http://www.whitehouse.gov/omb/budintegration/

pmac 3-3-03draft.html)

24. Office of Special Education and Rehabilitative Services, U.S. Department of Education, 

(2001), History: Twenty-Five Years of Progress in Educating Children with Disabilities 

Through IDEA. (available at http://www.ed.gov/policy/speced/leg/idea/history.pdf)

25. U.S. Department of Education, Voluntary National Standard for Accessible Digital 

Instructional Materials to Be Developed (Press Release, November 15, 2002). 

(available at http://www.ed.gov/news/pressreleases/2002/11/11152002a.html)

26. U.S. Department of Education, with assistance of the National Information Center for 

Children and Youth with Disabilities (NICHY), A Guide to the Individualized Education 

Program (July 2000). (available at http://www.ed.gov/parents/needs/speced/iepguide/

index.html)

27. State of the Union Address (January 20, 2004). (available at

http://www.whitehouse.gov/news/releases/2004/01/20040120-7.html)

28. White House Fact Sheet: Jobs for the 21st Century (January 21, 2004). 

(available at: http://www.whitehouse.gov/news/releases/2004/01/20040121.html)

29. The Secretary of Education's Commission on Achieving Necessary Skills (SCANS), 

What Work Requires of Schools (June 1991). 

(available at: http://wdr.doleta.gov/SCANS/whatwork/whatwork.html)

30. Most employment services growth in developmental disabilities during 1988-2002 was in 

segregated settings. Braddock, D., Hemp, R., & Rizzolo, M.C., Mental Retardation 

(forthcoming). 

31. 69 Fed. Reg. 5643 (February 5, 2004). (available at http://a257.g.akamaitech.net/7/257/

2422/14mar20010800/edocket.access.gpo.gov/2004/pdf/04-2561.pdf)

The President's Committee for People with Intellectual Disabilities 61
32. Individual Development Accounts. Office of Community Services, Administration for

Children and Families, U.S. Department of Health and Human Services. (available at

http://www.acf.dhhs.gov/programs/ocs/ida/index.html)

33. Surgeon General's Conference on Health Disparities and Mental Retardation, National

Institute of Child Health and Human Development, U.S. Department of Health and Human 

Services, Closing the Gap: A National Blueprint to Improve the Health of Persons with

Mental Retardation, (2002). (available at http://www.nichd.nih.gov/publications/pubs/

closingthegap/index.htm)

34. Rizzolo, et al., supra. 

35. Polister, B. Prouty, R. W., Smith, J., & Lakin, K. C., Services provided by state and 

nonstate agencies in 2000, Residential services for persons with developmental 

disabilities: Status and trends through 2000 (pp. 63-80), University of Minnesota (2001). 

36. Nerney, T. & Shumway, D., Beyond Managed Care: Self-Determination for Persons with Developmental Disabilities, monograph, University of New Hampshire Institute on 

 Disabilities (1996). 

37. The Declaration of Independence, para. 2 (U.S. 1776). 

38. The Secretary of Education's Commission on Achieving Necessary Skills (SCANS), 

supra. 

62 The President's Committee for People with Intellectual Disabilities
PCPID Citizen Members 

Madeleine C. Will 

Chairperson

Kenneth E. Lohff 

Milton, Wisconsin 

Washington, D.C. 

William E. Lori, S.T.D. 

Vijaya L. Appareddy, M.D. Bridgeport, Connecticut 

Vice Chairperson 

Chattanooga, Tennessee Edward R. Mambruno 

Waterbury, Connecticut

Nancy C. Blanchard 

Lakeville, Minnesota Alvaro A. Marin 

Huntington Park, California 

James T. Brett 

Dorchester, Massachusetts Kim M. Porter-Hoppe 

Ypsilanti, Michigan 

Mary C. Bruene 

Des Moines, Iowa Michael J. Rogers 

Kenmore, Washington 

Claudia L. Coleman 

Los Altos, California Windy J. Smith 

Knoxville, Tennessee 

Olivia R. Colvin 

San Antonio, Texas Lon N. Solomon 

Fairfax, Virginia 

Zoraida F. Fonalledas

San Patricio, Guaynabo 

Puerto Rico 

Karen L. Staley 

Beaverton, Oregon 

Kathy Hargett 

Potomac, Maryland 

Gene C. Stallings 

Powderly, Texas 

Brenda A. Leath 

Washington, D.C.

Annette M. Talis 

Madison, Wisconsin 

The President's Committee for People with Intellectual Disabilities 63
PCPID Ex Officio Members 

THE SECRETARY OF HEALTH AND HUMAN SERVICES 

The Honorable Tommy G. Thompson 

Secretary 

U.S. Department of Health and Human Services 

Washington, D.C. 

Represented by: 

The Honorable Margaret Giannini, M.D., F.A.A.P. 

Director, Office on Disability 

U.S. Department of Health and Human Services 

Washington, D.C. 

THE ATTORNEY GENERAL 

The Honorable John Ashcroft 

Attorney General 

U.S. Department of Justice 

Washington, D.C. 

Represented by: 

Mark Gross 

Deputy Chief, Appellate Section, Civil Rights Division 

U.S. Department of Justice 

Washington, D.C. 

THE SECRETARY OF COMMERCE

The Honorable Donald L. Evans 

Secretary 

U.S. Department of Commerce 

Washington, D.C. 

Represented by: 

Nique Fajors

U.S. Department of Commerce 

Washington, D.C. 

64 The President's Committee for People with Intellectual Disabilities
THE SECRETARY OF EDUCATION 

The Honorable Roderick R. Paige, Ph.D. 

Secretary 

U.S. Department of Education 

Washington, D.C. 

Represented by: 

Troy Justesen, Ed.D., Acting Assistant Secretary 

Special Education and Rehabilitative Services 

U.S. Department of Education, Washington, D.C. 

Joan Mele-McCarthy, D.A., 

Special Assistant to the Assistant Secretary 

Special Education and Rehabilitative Services 

U.S. Department of Education, Washington, D.C. 

THE SECRETARY OF HOMELAND SECURITY 

The Honorable Tom Ridge 

Secretary 

Washington, D.C. 

Represented by:

Daniel W. Sutherland 

Officer for Civil Rights and Civil Liberties 

Department of Homeland Security 

Washington, D.C. 

THE SECRETARY OF HOUSING AND URBAN DEVELOPMENT 

The Honorable Alphonso Jackson 

Secretary 

U.S. Department of Housing and Urban Development

Washington, D.C. 

Represented by: 

William 0. Russell 

Deputy Assistant Secretary, Office of Public and Indian Housing U.S. Department of Housing and Urban Development

Washington, D.C. 

The President's Committee for People with Intellectual Disabilities 65
THE SECRETARY OF INTERIOR 

The Honorable Gale A. Norton 

Secretary 

U.S. Department of Interior 

Washington, D.C. 

Represented by: 

Rejane ("Johnnie") Burton 

Director of the Minerals Management Service 

U.S. Department of Interior 

Washington, D.C. 

THE SECRETARY OF LABOR 

The Honorable Elaine L. Chao 

Secretary 

U.S. Department of Labor 

Washington, D.C. 

Represented by: 

The Honorable W. Roy Grizzard, Jr., Ed.D. 

Assistant Secretary, Office of Disability Employment Policy 

U. S. Department of Labor 

Washington, D.C. 

THE COMMISSIONER OF THE SOCIAL SECURITY ADMINISTRATION 

The Honorable Jo Anne B. Barnhart 

Commissioner 

Social Security Administration 

Baltimore, Maryland 

Represented by: 

Martin H. Gerry 

Deputy Commissioner, Disability and Income Security Programs

Social Security Administration 

Baltimore, Maryland 

Julian A. Manelli 

Special Assistant 

Disability and Income Security Programs

Social Security Administration 

Baltimore, Maryland 

66 The President's Committee for People with Intellectual Disabilities
THE SECRETARY OF TRANSPORTATION

The Honorable Norman Y. Mineta

Secretary 

U.S. Department of Transportation 

Washington, D.C. 

THE CHAIR OF THE EQUAL EMPLOYMENT OPPORTUNITY COMMISSION 

The Honorable Cari Dominguez

Chairperson

Equal Employment Opportunity Commission 

Washington, D.C. 

Represented by: 

Mary Kay Mauren 

Senior Attorney /Advisor 

Equal Employment Opportunity Commission 

Washington, D.C. 

THE CHIEF EXECUTIVE OFFICER OF THE CORPORATION FOR 

NATIONAL AND COMMUNITY SERVICES 

The Honorable David Eisner 

Chief Executive Officer 

Corporation for National and Community Services

Washington, D.C. 

Represented by: 

Michele Tennery 

Senior Associate, Public Affairs 

Corporation for National and Community Services

Washington, D.C. 

THE CHAIR OF THE NATIONAL COUNCIL ON DISABILITY

The Honorable Lex Frieden

Chairman 

National Council on Disability 

Washington, D.C. 

Represented by: 

Milton Aponte, Esq. 

Council Member 

National Council on Disability 

Cooper City, Florida 

The President's Committee for People with Intellectual Disabilities 67
PCPID Subcommittees 

SUBCOMMITTEE ON EDUCATION AND TRANSITION FROM SCHOOL TO WORK 

AND ADULT LIFE

Olivia Colvin 

Mark Gross (DOJ) 

Robert H. Pasternack, Ph.D. 

Joan Mele-McCarthy, D.A. (DOED) 

Annette Talis, Chairperson 

SUBCOMMITTEE ON FAMILY SERVICES AND SUPPORTS 

Vijaya Appareddy, M.D. 

Nancy Blanchard 

Brenda Leath, Chairperson

William E. Lori, S.T.D. 

Julian Manelli (SSA) 

Alvaro Mann 

Michele Tennery (CNCS) 

Lon Solomon, Vice Chairperson 

Karen Staley

SUBCOMMITTEE ON PUBLIC AWARENESS 

Mary Chris Bruene 

Zoraida Fonalledas 

Kathy Hargett 

Kim Porter-Hoppe, Chairperson 

Windy Smith, Co-Chairperson 

Gene Stallings 

SUBCOMMITTEE ON EMPLOYMENT AND ASSET DEVELOPMENT 

Jim Brett 

Milton Aponte (NCD) 

W. Roy Grizzard, Jr., Ed.D. (DOL) 

Kenneth Lohff 

Edward Mambruno, Chairperson 

Mary Kay Mauren (EEOC) 

SUBCOMMITTEE ON ASSISTIVE TECHNOLOGY AND INFORMATION 

Claudia Coleman, Chairperson 

Margaret Giannini, M.D., F.A.A.P. (OD) 

Madeleine Will 

Mary Kay Mauren (EEOC) 

Michael Rogers 

68 The President's Committee for People with Intellectual Disabilities
PCPID Staff 

Sally Atwater 

Executive Director 

Telephone: 202-260-1500 

E-mail: Satwater@acf.hhs.gov

The President's Committee for People with Intellectual Disabilities 69 

George N. Bouthilet, Ph.D. 

Research Director 

Telephone: 202-205-5408 

E-mail: Gbouthilet@acf.hhs.gov

Lena Stone 

Program Specialist 

Telephone: 202-205-7989 

E-mail: Lstone@acf.hhs.gov

Sheila Whittaker 

Budget Officer 

Telephone: 202-260-0452 

E-mail: Swhittaker@acf.hhs.gov

Laverdia T. Roach 

Special Assistant to the Executive Director 

Telephone: 202-205-5970 

E-mail: Lroach@acf.hhs.gov