President’s Committee for People with

Intellectual Disabilities

The Aerospace Center, Suite 701

370 L ‘Enfant Promenade, SW

Washington, D.C. 20447

Telephone: 202-619-0634

Fax: 202-205-9519

Website: http://www.acf.hhs.gov/programs/pcpid/index.html

E-mail: pcpid@acf.hhs.gov
President’s Committee for People with

Intellectual Disabilities

A CHARGE WE HAVE TO KEEP

A Road Map

to Personal and Economic Freedom for

People with Intellectual Disabilities

in the 21st Century

2004
The President’s Committee for People with Intellectual Disabilities

 Disclaimer

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.

i
The President’s Committee for People with Intellectual Disabilities ii
The President’s Committee for People with Intellectual Disabilities

A New Name and a New Century

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.

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.

iii
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,

self-determination, 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.ii

iv
The President’s Committee for People with Intellectual Disabilities

Table of Contents

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

v
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

vi
The President’s Committee for People with Intellectual Disabilities

Introduction

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, 7 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.8

1
The President’s Committee for People with Intellectual Disabilities

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

2
The President’s Committee for People with Intellectual Disabilities

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

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.

3


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 different sort 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.

6
The President’s Committee for People with Intellectual Disabilities

The President’s Committee for People

with Intellectual Disabilities

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.

7
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.

8
The President’s Committee for People with Intellectual Disabilities

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.

9
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.

10
The President’s Committee for People with Intellectual Disabilities

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.

11
The President’s Committee for People with Intellectual Disabilities

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:

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 self-esteem.

12
The President’s Committee for People with Intellectual Disabilities

“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

“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

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.

PUBLIC AWARENESS

13
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.20 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.

14
The President’s Committee for People with Intellectual Disabilities

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.

15
The President’s Committee for People with Intellectual Disabilities

Public Awareness Recommendations

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.

16
The President’s Committee for People with Intellectual Disabilities

“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

“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

“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

PERFORMANCE MANAGEMENT

17
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.

18
The President’s Committee for People with Intellectual Disabilities

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.

19
The President’s Committee for People with Intellectual Disabilities

Performance Management Recommendations

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.

20
The President’s Committee for People with Intellectual Disabilities

“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

“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

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.

EDUCATION AND TRANSITION FROM

SCHOOL TO WORK AND ADULT LIFE

21
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.”

22
The President’s Committee for People with Intellectual Disabilities

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, self-determination 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 largescale 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

23
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.

24
The President’s Committee for People with Intellectual Disabilities

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.

25
The President’s Committee for People with Intellectual Disabilities

Education and Transition from School to Work and

Adult Life Recommendations

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.

26
The President’s Committee for People with Intellectual Disabilities

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

“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

EMPLOYMENT AND ASSET DEVELOPMENT

27
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

28
The President’s Committee for People with Intellectual Disabilities

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.

29
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

30
The President’s Committee for People with Intellectual Disabilities

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 self-advocate

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 parttime 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.

31
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.

32
The President’s Committee for People with Intellectual Disabilities

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.31

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.

33
The President’s Committee for People with Intellectual Disabilities

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

Employment and Asset Development

Recommendations

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.

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.

35
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.

36
The President’s Committee for 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

“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

“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

FAMILY SERVICES AND SUPPORTS

37
The President’s Committee for People with Intellectual Disabilities

“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

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.

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 2002,33 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.

38
The President’s Committee for People with Intellectual Disabilities

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.

39
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.

40
The President’s Committee for People with Intellectual Disabilities

• 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 employerbased options.

41
The President’s Committee for People with Intellectual Disabilities

Family Services and Supports Recommendations

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.

42
The President’s Committee for People with Intellectual Disabilities

“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

“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

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.

ASSISTIVE TECHNOLOGY AND

INFORMATION

43
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.

44
The President’s Committee for People with Intellectual Disabilities

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/)

45
The President’s Committee for People with Intellectual Disabilities

Assistive Technology and Information

Recommendations

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.

46
The President’s Committee for People with Intellectual Disabilities

Road Map to Success

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

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.

47
The President’s Committee for People with Intellectual Disabilities

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

Self Employment

A Success Story

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.

49
The President’s Committee for People with Intellectual Disabilities

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 SSDI 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.

51
The President’s Committee for People with Intellectual Disabilities

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

“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 wellintended public policies.

Executive Summary and

Recommendations

53
The President’s Committee for People with Intellectual Disabilities

Our 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).38

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.

55
The President’s Committee for People 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.

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.

57
The President’s Committee for People with Intellectual Disabilities

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/adahom1.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.cornell.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)

59
The President’s Committee for People with Intellectual Disabilities

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).

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/annual/osep/2002/index.html)

14. SRI International, National Longitudinal Transition Study: A Summary of Findings (1993).

(available at www.sri.com/policy/cehs/publications/dispub/nlts/nltssum.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)

61
The President’s Committee for People with Intellectual Disabilities

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

Madeleine C. Will

Chairperson

Washington, D.C.

Vijaya L. Appareddy, M.D.

Vice Chairperson

Chattanooga, Tennessee

Nancy C. Blanchard

Lakeville, Minnesota

James T. Brett

Dorchester, Massachusetts

Mary C. Bruene

Des Moines, Iowa

Claudia L. Coleman

Los Altos, California

Olivia R. Colvin

San Antonio, Texas

Zoraida F. Fonalledas

San Patricio, Guaynabo

Puerto Rico

Kathy Hargett

Potomac, Maryland

Brenda A. Leath

Washington, D.C.

Kenneth E. Lohff

Milton, Wisconsin

William E. Lori, S.T.D.

Bridgeport, Connecticut

Edward R. Mambruno

Waterbury, Connecticut

Alvaro A. Marin

Huntington Park, California

Kim M. Porter-Hoppe

Ypsilanti, Michigan

Michael J. Rogers

Kenmore, Washington

Windy J. Smith

Knoxville, Tennessee

Lon N. Solomon

Fairfax, Virginia

Karen L. Staley

Beaverton, Oregon

Gene C. Stallings

Powderly, Texas

Annette M. Talis

Madison, Wisconsin

PCPID Citizen Members

63
The President’s Committee for People with Intellectual Disabilities

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 O. Russell

Deputy Assistant Secretary, Office of Public and Indian Housing

U.S. Department of Housing and Urban Development

Washington, D.C.

65
The President’s Committee for People with Intellectual Disabilities

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

67
The President’s Committee for People with Intellectual Disabilities

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 Marin

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

Laverdia T. Roach

Special Assistant to the Executive Director

Telephone: 202-205-5970

E-mail: Lroach@acf.hhs.gov

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

69
The President’s Committee for People with Intellectual Disabilities

Acknowledgments

The Committee wishes to acknowledge and express appreciation for the support and

contributions of the following persons who helped shape this document.

Duane F. Alexander, Joe Alexander, Willam T. Allen,* Amie Amiot, William C.Anderson,

Jane Anthony, Berty Aponte, Bruce Applegren, Tyra Barnes, Robert L.Beck, Cathy Bodine-Klanderud,

David Braddock, Edward A. Brann, Shelly Brantley, Sharon Brent, Leola Brooks, Marge Brown,

Marisa Brown, Joanne Butler, Christopher Button, Laura Canfield, Richard M.Campanelli, Pam

Carchio, Pam Carter, Brindisi Chan, Loretta Chittum, Stephen Corbin, Jamie Coronado, Lisa Cox,

Doreen Croser, Armentha Cruise, Frankie Dashnaw, Tobey Davies, Brenda Dencer, Hollye Doane,

Mary Jean Duckett, Bill Edwards, Steve Eidelman, Barry Eigen, Eileen Elias, Judith Emory, Don Evans,

Laura Farah, Elizabeth Fay, Liz Fay, Chester Finn, Robert J. Fletcher, Karen Flippo, Marty Ford,

Elizabeth Fox, Robinsue Frohboese, Martin Gerry, Robert Gettings, Elizabeth Getzel, Alan Goldberge,

Jackie Golden, Susan Goodman, Cary Griffin, Lee Grossman, James Hanson, Tari-sue Hartman,

Johnette Hartnett, Susan Hasazi, Mary Hayden, Cathy Healy, Bryna Helfer, Susan Heney, Robert

(“Bobby”) Hillert, Steve Holmes, Marty Hudson, Vanessa Jenkins, George Jesien, David Johnson,

Donna Johnson, Troy Justensen, Alexandra Kielty, William (“Bill”) Kiernan, Peter Kinzler, Karen Kucik,

Christopher Kuczynski, Stephanie Lee, Bette Levin, Allen Levitt, Patti Lind, Richard Luecking, Steve

Luzetsky, Claire Mambruno, Paul Marchand, Judy C. Martz, Faith McCormick, John J. McGee,

Martha McParlin, James R. Meadours, Robert Miller, Norman Y. Mineta, Michael Morris, Patricia

Morrissey, Raymond Myers, Fay Nafid, Tom Nerney, Bill Nixon, Bobbie Norris, Maggie Nygren,

Elizabeth Obermayer, Robert H. Pasternack, Hai Phuong, Rene Pietrangelo, Stephanie Powers, Rick

Rader, Hassan Raheed, Geneine Ratcliff, Alan Reich, Barbara Ricks, Lynette Robinson, David

Rogofsky, Neal Romano, John Rose, Cliff Rosenthal, Pat Rowe, Jamie Ruppermann, Ricki Sabia,

David Sampson, Wille Sessions, Lisa Sheppard, Tim Shriver, Robert Siedlecki, Gary Siperstein, Dennis

G. Smith, Juanita Smith, Blaine Somerville, Edward W. Sontag, David Sprenger, Glenn Stanton, Jenna

Star, Therese Stein, Sue Suter, Eileen Sweeney, Sue Swenson, Ginny Thornburg, Steve Tingus, Roy

Trudel, Wanda Turner, Catherine Tyrell, Ron Vederman, Paul Wehman, Mea William, Ronita

Wisniewski, Tony Young, Robert Zdenek.

* Deceased

70
President’s Committee for People with

Intellectual Disabilities

The Aerospace Center, Suite 701

370 L ‘Enfant Promenade, SW

Washington, D.C. 20447

Telephone: 202-619-0634

Fax: 202-205-9519

Website: http://www.acf.hhs.gov/programs/pcpid/index.html

E-mail: pcpid@acf.hhs.gov