REPORT TO THE PRESIDENT

HOLDING TRUTHS TO BE SELF-EVIDENT:

AFFIRMING THE VALUE

OF PEOPLE 

WITH INTELLECTUAL DISABILITIES

2007
REPORT TO THE PRESIDENT

HOLDING TRUTHS TO BE SELF-EVIDENT:

AFFIRMING THE VALUE 

OF PEOPLE

WITH INTELLECTUAL DISABILITIES

2007
 

Dedicated, affectionately, to the Memory of George N. Bouthilet, Ph.D. 

former Research Director

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

The White House 

Washington, D.C. 20500 

Dear Mr. President: 

I forward for your consideration the 2007 Annual Report of the 

President’s Committee for People with Intellectual Disabilities 

(PCPID). The report provides advice on matters that pertain to 

the field of intellectual disabilities and people with 

intellectual disabilities. 

Committee members organized their advice to you within the 

conceptual framework of the “inherent value” of people with 

intellectual disabilities, the challenges they face, and the 

opportunities that affirm their value. The Committee seeks to 

heighten the awareness of leading governmental officials and lay 

Americans regarding policies and practices that impact the lives 

of citizens with intellectual disabilities. 

Committee members applaud and embrace the goals in your New 

Freedom Initiative (NFI). The NFI notes that many Americans 

with disabilities “remain outside the economic and social 

mainstream of American life.” This reality results in increased 

challenges and additional quality of life issues related to 

housing and health. Providing core ideas to affirm the value of 

people with intellectual disabilities is what has motivated the 

Committee members, many of whom are parents, siblings, or 

relatives of a person with an intellectual disability, and have 

personal knowledge of this reality. 

This Report offers recommendations that will create increased 

options and opportunities and affirm the value of Americans with 

intellectual disabilities. 

It should be noted that this document does not necessarily 

reflect the views of the United States Department of Health and 

Human Services. Although some of the information and data 

contained in this report were contributed by authorities in the 

field of disability, research, education, housing, emerging 

technology, public policy 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 United States Department of Health and Human 

Services, or other Federal Government agencies. 

Although the term “mental retardation” (MR) appears in several 

sections of this Report, particularly in reference to biomedical 

research where the term is still widely used, PCPID acknowledges 

and advocates for use of the term “intellectual disability”. 

 Sincerely, 

 

 Michael O. Leavitt 

 
The President

The White House

Washington, DC 20500

Dear Mr. President:

On behalf of the President’s Committee for People with Intellectual 

Disabilities (PCPID), I wish to express appreciation for the honor to serve 

your Administration and the American people. We support and are committed to

the fulfillment of the mission of the Committee to provide advice and 

assistance to you and to the Secretary of Health and Human Services on a 

broad range of topics that relate to people with intellectual disabilities, 

and to the field of intellectual disabilities. For many of us, it is a 

personal relationship with an individual with an intellectual disability that 

provides the positive motivation in our lives to work to improve the quality 

of life that is experienced by people with intellectual disabilities and 

their families.

When considering and discussing the status of the national effort to remove 

barriers that prevent full inclusion of people with intellectual disabilities 

in community living as most Americans know it, the Committee was struck with 

the regrettable reality that people with intellectual disabilities are, too 

often, excluded because they are undervalued or believed to be less worthy of 

full citizenship. Committee members decided to explore specific ways to 

heighten public awareness of the inherent value of people with intellectual 

disabilities; particularly with regard to education, housing, health, 

technology, the criminal justice system, and application of research 

findings. We are pleased to share the results of this exploration with you 

and the White House Staff. 

Mr. President, members and staff of the President’s Committee for People with 

Intellectual Disabilities appreciate the opportunity to submit for your 

consideration the Report, HOLDING TRUTHS TO BE SELF-EVIDENT: Affirming the 

Value of People with Intellectual Disabilities. The intended outcome of this 

Report is to promote further understanding on the part of leading government 

officials, as well as lay Americans, of the inherent value of people with 

intellectual disabilities, and appropriate public policy that reflects this 

understanding. We are hopeful that the Report will facilitate early 

realization of the Committee’s mission to improve the quality of life that is 

experienced by people with intellectual disabilities and their family 

members.

Sincerely,

Dallas “Rob” Sweezy

Chair
I 

Table of Contents 

Committee Profile ............................................................................... II

Executive Summary and Recommendations ............................................... 1

SECTION I: The New Freedom Initiative .................................................. 3 

 Emerging Technologies .................................................................. 4 

 Moving Toward Equity within Education: 

Least Restrictive Environment ......................................................... 11 

Housing for People with Intellectual Disabilities .................................... 16 

The Medicaid Program and Early and Periodic Screening, 

Diagnostic, and Treatment Services ................................................... 22

SECTION II: Effective and Timely Application of Basic Research ................... 26 

SECTION III: Heightening Public Awareness of the Value

 of People with Intellectual Disabilities ..................................... 35 

SECTION IV: Crime Victims with Intellectual Disabilities ............................... 42 

Conclusion .......................................................................................... 47 

Acknowledgments ................................................................................. i 

Citizen Members.......... ......................................................................... iv

Ex officio Members ................................................................................. v

Staff ..................................................................................................... vii 
II

Committee Profile 

Although there is no national census of the incidence and prevalence of intellectual disabilities, 

authorities in the field estimate that the number may be as high as 2 percent of the population, six 

million individuals. One in 10 families in the United States is directly affected by a person with 

intellectual disabilities. In order to ensure the right of a “decent, dignified place in society” for 

people with mental retardation (intellectual disabilities), President Lyndon B. Johnson 

established, in 1966, the Committee on Mental Retardation (PCMR), now the President’s 

Committee for People with Intellectual Disabilities (PCPID), to focus on this critical subject of 

national concern. Since that time, the President’s Committee has served in an advisory capacity 

to the President and the Secretary of Health and Human Services on a broad range of matters 

relating to persons with intellectual disabilities and the field of intellectual disabilities. 

Since its inception, the President’s Committee has led the charge to improve the lives of people 

with intellectual disabilities, most recently embracing the vision and supporting the plan that is at 

the heart of President George W. Bush’s New Freedom Initiative (NFI) to tear down barriers that 

prevent people with intellectual disabilities from enjoying a quality of life that promotes 

independence, self-determination, and full participation as productive members of society. The 

NFI includes, but is not limited to: increasing access through assistive and universally designed 

technology; expanding educational opportunities for youth with disabilities; and promoting full 

and lifelong access to all aspects of community life. 

The Committee consists of 21 citizen members appointed by the President and 13 ex officio 

heads of Federal Government departments and agencies designated by the President. The 13 ex 

officio members include: the Attorney General, Secretary of the Interior, Secretary of 

Commerce, Secretary of Labor, Secretary of Health and Human Services, Secretary of Housing 

and Urban Development, Secretary of Transportation, Secretary of Education, Secretary of 

Homeland Security, President and Chief Executive Officer of the Corporation for National and 

Community Service, Commissioner of the Social Security Administration, Chair of the Equal 

Employment Opportunity Commission, and Chair of the National Council on Disability. The 

President’s Committee for People with Intellectual Disabilities is led by an Executive Director, 

also appointed by the President, and supported by a team of Federal employees. 
1 

Executive Summary and Recommendations 

In fulfillment of its Executive Order to prepare an annual report to the President, the President’s 

Committee for People with Intellectual Disabilities submits its 2007 Report, HOLDING 

TRUTHS TO BE SELF-EVIDENT: Affirming the Value of People with Intellectual Disabilities.

The Report offers recommendations in the following three areas that impact the daily lives of 

people with intellectual disabilities: 

a) The New Freedom Initiative

b) Effective and Timely Application of Basic Research

c) Heightening Public Awareness of the Value of People with Intellectual 

Disabilities

 

The Report addresses the issues and concerns related to these three areas that have been 

identified by people with intellectual disabilities, their family members, self-advocates and 

advocates, researchers, service providers, constituency group representatives, and allied Federal 

and state agencies and organizations.

In the area of the New Freedom Initiative, established to tear down barriers to full community 

participation for Americans with disabilities, the Report explores ways to further progress for 

people with intellectual disabilities through the following recommendations:

1. Increase access to emerging technology, and base public policy regarding information and 

technology accessibility on market driven incentives.

2. Expand educational opportunities and improve instruction and assessment for students with 

intellectual disabilities, and support implementation of the Least Restrictive Environment 

(LRE) provisions found in the Individuals with Disabilities Education Act (IDEA) by 

strengthening the dissemination and application of education research and best practices on 

accessing the general education curriculum for students with intellectual disabilities.

3. Promote full access to community life and integrate Americans with intellectual disabilities 

into the community by improving the availability of community-based housing and necessary 

staff to support people with intellectual disabilities.

4. Encourage State Medicaid Directors, not currently doing so, to initiate and sustain efforts to 

ensure that all Medicaid-eligible children in every state have access to Early and Periodic 

Screening, Diagnostic, and Treatment (EPSDT) services to help reduce the incidence and 

prevalence of intellectual disabilities, mitigate its effects, and increase access to appropriate 

health care.

In the area of Research Application, the Committee recognizes an opportunity to speed the flow 

of basic scientific findings – both positive and negative – into the clinical environment through 

the following recommendations: 
2 

1. Foster continued intensified efforts to streamline the translation of basic scientific 

findings into clinical applications.

2. Encourage the vigorous pursuit and development of new technologies and approaches for 

early screening, detection, diagnosis, amelioration and treatment.

3. Establish an Ad Hoc Federal Interagency Council on Research Translation for the Benefit 

of People with Intellectual Disabilities, with membership from appropriate Federal 

agencies, advised by pertinent non-governmental organizations. 

In the area of Public Awareness, the Report encourages the Federal Government to dispel longheld myths regarding people with intellectual disabilities, and demonstrate their value and 

competence to Federal, state and local officials, and the American public through the following 

recommendations: 

• Lead by example by including in the State of the Union Address, Weekly Radio 

broadcast, and other public appearances, statements of support, stories of inspiration and 

statistical data on the contributions of people with intellectual disabilities.

• Mandate that every program throughout the Federal Government, that was established to 

address a single or range of specified needs of individuals diagnosed with a physical or 

mental impairment that substantially limits one or more of the major life activities of such 

individuals, set aside a percentage of its total budget to increase public awareness of the 

program’s existence and purpose. 

• Establish a National Disability History Week to instill in our communities an 

understanding of the value of people with disabilities. 

• Increase the commitment to support DisabilityInfo.gov so that it may better fulfill its 

mission to provide increased access to vital information and resources. 

 

• Encourage and provide the necessary training to those working in the criminal justice 

system to facilitate recognition of the competency and value of people with intellectual 

disabilities to the criminal justice system, both as victims and witnesses. 
3 

SECTION I: The New Freedom Initiative 

When the groundbreaking policy, The New Freedom Initiative, was introduced on February 2, 

2001 Americans embraced it as an important step toward ensuring that all Americans with 

disabilities, whether young or old, can participate more fully in the life of their communities and 

of our country. 

Good work has been accomplished, but there is work yet to be done. We must continue until all 

people with intellectual disabilities are fully recognized and appreciated for their inherent, God 

given value, and are included as full participants in their communities. To demonstrate its 

commitment to this goal, the Committee chose to examine concerns, issues, challenges, and 

barriers related to full and lifelong inclusion of people with intellectual disabilities in the 

following focus areas of the New Freedom Initiative:

1. broadening access to emerging technologies. 

2. expanding educational opportunities for youth through increased access to general education 

inclusion. 

3. promoting full access to community life through more community housing and home 

ownership. 

4. targeting examination of Medicaid’s youth health program – Early and Periodic Screening, 

Diagnostic, and Treatment (EPSDT) services – which focuses on prevention and intervention 

of intellectual disabilities in children and youth. 
4 

Emerging Technologies 

Background and Rationale 

Strengthening the Commitment to Accessible Cognitive Support Technologies 

The New Freedom Initiative 2007 Progress Report clearly conveys the commitment to promote 

partnerships for people with all disabilities to gain greater access to the workplace, school and 

community life through technology. However, the promise of technology for individuals with 

intellectual disabilities has not been fulfilled. There is a reticence in the rehabilitation technology 

field to address the challenge of developing accessible technology for individuals with 

intellectual disabilities. Even among disability professionals, there are often misconceptions 

about the “inability” of individuals with intellectual disabilities to use technology. However, 

evidence-based research has consistently shown that individuals with intellectual disabilities can 

effectively utilize properly designed cognitive support technology.1 Cognitive technologies 

include products that “aid a person’s cognitive functioning (comprehension, perception, memory, 

problem solving and reasoning.)”2

The Promise of Cognitive Support Technologies 

Technology can be an equalizer and promotes independence, productivity and improved quality 

of life by increasing access to education, employment, healthcare, and community living that 

people without disabilities often take for granted. More than fifty years ago, the field of assistive 

technology began to create a myriad of life-changing technologies for people with physical and 

sensory disabilities. Regrettably, the development of technologies designed to address the 

specific needs of individuals with intellectual and cognitive disabilities has lagged far behind that 

of other disabilities. Now, formative research and development, and the recent availability of 

new cognitive support technologies, offer individuals with intellectual and developmental 

disabilities some of the same kind of opportunities to benefit from technology.1

 The following 

three real-life examples demonstrate ways that cognitive support technologies empower people 

with intellectual disabilities. 

JAY uses a picture and audio e-mail program designed for non-readers to stay in 

touch with friends and family. The program uses a picture address book and enables 

users to speak and automatically send e-mail messages verbally. Incoming email 

shows the picture of the sender and, when selected, reads the incoming message out 

loud.3

MICHAEL’S enthusiasm for life knows no bounds. He hasn’t let his physical and 

intellectual challenges prevent him from overcoming one of the few barriers that 

continued to frustrate him – the inability to gain functional reading skills. Michael 

uses an accessible electronic book reader prototype. His own words best summarize 

 

1 M.L. Wehmeyer et al, “Technology Use and People With Mental Retardation,” in L.M. Glidden (ed.), International Review of Research in 

Mental Retardation, Vol.29, San Diego, CA, Academy Press, 2004, 

pp. 293-337. 2 http://www.memoryzine.com/cognitivetechnology.html#AUTHORS. Accessed on October 18, 2007. 3 User of Web Trek Connect, accessible e-mail program (www.ablelinktech.com).
5 

his success: “Now I can read a book for the first time in my life! I know what I’m 

getting for Christmas – BOOKS!”4

JON is a 46-year-old man whose intellectual disability presents challenges to his 

highly social, community-based lifestyle. Access to his network of friends has been 

confounded by the complexities of travel on the public transit system. A GPSsupported Pocket PC system for independent travel on the buses provides John with a 

personal cognitive aid that supports his newfound independence. He now has 

confidence in knowing where to get on the bus, how long to stay on, and ultimately, 

when to ring the bell and successfully get off at his desired destination.5 

The benefits of computer use by people with intellectual disabilities have been highlighted 

recently in the International Review of Research in Mental Retardation6

and have been 

demonstrated in many educational, vocational and independent living settings.7 For example, 

computers have been used to teach vocational tasks,8 , 9 for anti-victimization training,10 language 

acquisition,11 as a motivational tool,12 for menu planning,13 for independent Internet access,14 for 

indicating career preferences15 and for decision-making support.16 Computer use by individuals 

with intellectual disabilities leads to:

1. enhanced self-esteem—People with intellectual disabilities are not only unafraid of 

computers, they seem very anxious for an opportunity to use them. 

2. increased independence—Studies have shown that self-directed use of computers by people 

with intellectual disabilities to perform various vocational and independent living tasks can 

significantly reduce the amount of assistance required from others. 

3. self-direction—Computer-generated audio prompting provides an increased sense of control 

and empowerment to users with intellectual disabilities.

 

4 User of Rocket Reader, accessible e-book program (www.ablelinktech.com). 5 User of WayFinder, accessible transportation aid (www.ablelinktech.com). 6 Wehmeyer, pp. 293-337. 7 Ibid.

8 D.K.Davies and S.E. Stock, “PictureCoach and PocketCoach: An Integrated Multi-Media Training System for Teaching and Maintaining 

Vocational Skills for Adults With Developmental Disabilities, “Phase I SBIR Final Report, U.S. Department of Education, March 1997, available 

through Ablelink Technologies, www.ablelinktech.com. 

D.K. Davies and S.E. Stock (1997) PictureCoach and PocketCoach: An Integrated Multimedia Training System for Skill Development for 

Individuals with Mental Retardation, Phase II SBIR Final Report, U.S. Department of Education, March 1997, available through Ablelink 

Technologies, www.ablelinktech.com. 

9 D.K. Davies and S.E. Stock, “Visual Assistant: A Portable Multimedia Training System for Community-Based Skill Development for 

Individuals with Mental Retardation,” Phase I Final Report, U.S. Department of Education, March 1999, available through Ablelink 

Technologies, www.ablelinktech.com. 10 C.S. Holzberg, “Technology in Special Education,” Technology and Learning, April, 1994, pp. 18-22. 11 C.S. Holzberg, “Technology in Special Education,” Technology and Learning, February, 1995, pp. 18-23. 12 G. Keyes, “The Time on Computer Program, “Teaching Exceptional Children, Fall, 1994. pp. 20-23. 13 S.E. Stock, S.K. Davies and A.O. Ocken, “NutraNet: An Internet Based Self-Directed Multimedia Nutritional Planning and Grocery Shopping 

System for Individuals with Mental Retardation,” Phase I SBIR Final Report, U.S. Department of Education, March, 2001, available through 

Ablelink Technologies, www.ablelinktech.com. 14 D.K. Davies et al, “Enhancing Independent Internet Access for Individuals With Mental Retardation Through the Use of a Specialized Web 

Browser: A Pilot Study, “Education and Training in Mental Retardation and Developmental Disabilities, 36(1), 2001, pp. 107-113. 15 S.E. Stock et al, “Self-Directed Career Preference Selection for Individuals With Intellectual Disabilities: Using Computer Technology to 

Enhance Self-Determination,” Journal of Vocational Rehabilitation, Vol. 19, 2003, 

pp. 95-103. 16 D.K. Davies et al, “A palmtop computer-based intelligent aid for individuals with mental retardation to increase independence and selfdetermination in decision-making, “Research and Practice for Persons with Severe Disabilities, Vol.28 No.3, 2003, pp. 182-193.
6 

4. efficient use of time—Studies have repeatedly shown that the amount of time required from 

teachers, staff or family members to assist in the completion of daily living, vocational and 

educational tasks can be reduced significantly with appropriate computer use.

Challenges and Opportunities 

Fewer than 25 percent of people with disabilities who could be helped by assistive technology 

(AT) use it.

17 Of that 25 percent, those with intellectual disabilities often use out-dated or even 

obsolete technologies that no longer work efficiently.18 Their experiences are generally less than 

optimal, in part because the AT was designed for other populations and does not address their 

special needs. Consequently, there is a high abandonment rate. The functional characteristics 

and user interface of any technology system must be designed with consideration of the physical, 

perceptual, and intellectual characteristics of the end-user population. Mainstream developers, 

and even many AT developers, have historically not considered the needs of users with cognitive 

disabilities in the design of their systems. Mainstream consumer preferences encourage 

developers to add more functionality into smaller devices resulting in more complexity and less 

accessibility to people with intellectual disabilities. The incorporation of universal design 

principles is critically important to assure that accessibility is not compromised. In contrast, 

emerging cognitive support technologies are proving to have the potential to better address many 

of the needs of individuals with intellectual disabilities. New cognitive technologies, 

applications of existing technologies, adapted devices and improved web accessibility can level 

the playing field and provide meaningful opportunities for individual achievement. 

The rapid advancement of mainstream technology presents an unprecedented opportunity to give 

millions of Americans the chance to live more productive lives, yet the development of the 

necessary assistive (and cognitive) technology policies, standards, and incentives are not keeping 

pace. In many cases, existing policies or standards do not apply, and there is a trend toward 

weakening current accessibility standards which would create further barriers to accessibility. 

An example of this trend is the proliferation of electronic forms of media for education and 

recreation. In response to increased security concerns, the present momentum is toward a closed 

system for digital rights management (DRM). Optical media technology has provided vast 

improvements in the delivery of data as seen in the move from analog music (vinyl records) to 

optical digital recordings (CDs/DVDs). However, piracy concerns have led to the introduction 

of security features that can prevent people using assistive technology from accessing the 

content. While such a closed system results in accessibility problems for all individuals, people 

with intellectual disabilities are most significantly impacted because their ability to participate in 

society is often dependent on the availability and accessibility of technological supports. 

The ever increasing use of the World Wide Web creates special challenges. There is increasing 

reliance on the web for communications, entertainment, access to information, and commercial

transactions. Consider, for example, the self-advocate who attempts to access health insurance 

 

17 M.J. Scherer, “Technology for improving cognitive function, Report on a workshop sponsored by the U.S. Interagency Committee on 

Disability Research, “Disability and Rehabilitation: Assistive Technology, September, 2006, Vol. 1, No. 4, pp 257-261. 18 Ibid.
7 

information only available online or a consumer who wants to shop online because talking with a 

sales associate in a store may be too difficult. Accessibility in online access, webpage design 

and navigation, and content are all areas of research and development that hold great promise. 

Without attention to the creation of new policies and standards, inaccessibility to the web will 

continue to contribute to the serious and growing digital divide. Fortunately, there is increased 

attention to the needs of people with intellectual disabilities in the standards and policy 

community, including the U.S. Access Board and the World Wide Web Consortium. Increased 

technical input to these groups and increased participation by self-advocates is needed to support 

their efforts.

An economic case for cognitive support technologies and increased accessibility can be easily 

made. One example is the relationship between intellectual disabilities and the natural aging 

process that often leads to declining attention spans, memory loss, and diminished problem 

solving skills. As more baby boomers age, many may find that they share some of the 

characteristics of individuals with intellectual disabilities. As a cohort, they create a large 

“market opportunity.” Consequently, research and development of new kinds of assistive and 

cognitive support technologies combined with regulatory standards to increase accessibility can 

be economically viable. A parallel example might be curb cuts that have assisted not only 

persons with physical disabilities in wheelchairs, but also cyclers and mothers with baby 

carriages. 

Noteworthy, is the fact that the National Institute on Disability and Rehabilitation Research 

(NIDRR) is funding several impressive projects that focus on cognitive technologies. First is the 

Rehabilitation Engineering and Research Center for the Advancement of Cognitive Technologies 

(RERC-ACT). The goal of this RERC is to research, develop, evaluate, implement, and 

disseminate innovative technologies and approaches that will have a positive impact on the way 

in which individuals with significant cognitive disabilities function within their communities and 

workplace. The Center incorporates: (1) a consumer-driven model for identifying the most 

significant barriers to independent living and workforce; (2) an approach that is balanced and 

uses both well-established and newly emerging technologies in its development projects; (3) a 

focus both on functional limitations and specific disabilities; and (4) mutually beneficial 

partnerships with private industry and public agencies. Research activities include: Needs, 

knowledge, barriers, and uses of AT by persons with cognitive disabilities; influences on AT use, 

non-use, and partial, and inappropriate use by persons with traumatic brain injury; AT 

enhancement of written expression for children and adults; needs assessment for creating 

affordable, context-aware technologies; and technology to promote decision-making skills and 

self-determination for students with cognitive disabilities. Development activities include: 

Design, implementation, and deployment of context aware technologies for persons with 

cognitive disabilities residing in community living environments; development of HealthQuest, 

an Internet-based product that enables individuals with intellectual disabilities to become active 

participants in their own health care; XML repository of common tasks; batteryless micropower 

sensors for context aware technologies; perceptive animated interfaces for workforce training; 

and environmentally appropriate behavioral cues for individuals with TBI.19

 

19 Cathy Bodine, “Rehabilitation Engineering Research Center for the Advancement of Cognitive Technologies (RERC-ACT),” University of 

Colorado, http://rerc-act.org.html, accessed November 8, 2007.
8 

Second is the Web Accessibility Initiative (WAI) Phase II that develops technical solutions and 

educational resources to increase accessibility of the Web for people with disabilities, and works 

with organizations around the world to promote awareness and implementation of Web 

accessibility solutions. For millions of individuals with visual, hearing, physical, cognitive and 

neurological disabilities, accessibility of the Web means access to the information society: to 

educational opportunity, employment, commerce, government services, and more. WAI Phase II 

activities include (1) ensuring accessibility support in a broad range of Web technologies through 

ongoing review of all World Wide Web Consortium (W3C) specifications for new Web 

technologies, and through liaison with other organizations developing Web technologies; (2) 

developing advanced guidelines and techniques for accessible Web content, for browsers and 

media players, and for authoring tools, and providing in-house technical assistance to software 

developers on implementation of accessibility guidelines in their products; (3) developing 

expanded techniques and resources for more effective evaluation of Web site accessibility; (4) 

developing a broad array of educational and outreach resources and activities promoting 

awareness and implementation of Web accessibility, including online and hard-copy resources, 

introductory materials for general audiences and technical materials for more advanced 

audiences, best-practice training resources and events, reference lists of tools, policies, and 

events, and liaison to other standards organizations interested in Web accessibility; and (5) 

analysis of potential accessibility issues in research and development related to advanced Web 

technologies.20

Third is the Assistive Technology and Cognitive Disabilities project that assesses the use of 

several types of information technologies by children and adults with cognitive disabilities, 

specifically individuals with TBI and mental retardation. Outcomes include: (1) a catalog of 

existing portable devices for memory and organization, (2) a list of features that enhance or 

inhibit use of these general purpose and special-use technologies, (3) results of needs surveys 

regarding use of these technologies, (4) white papers describing project findings, (5) tip cards to 

assist families in purchasing devices, (6) stronger partnerships between the consumer and 

research and development communities, and (7) recommendations for memory and organization 

device modifications and features for individuals with brain injury and mental retardation. The 

Brain Injury Association, Inc. leads and administers this collaborative partnership, which 

includes the Traumatic Brain Injury Model Systems Projects at Moss Rehabilitation Research 

Institute and Spaulding Rehabilitation Hospital, the Institute on Disabilities/Center for 

Excellence on Developmental Disabilities at Temple University, and the University of Akron.

21

The information received from the National Institute on Research and Rehabilitation Research 

and reported in the preceding paragraphs, as well as information from other researchers in the 

field of cognitive technologies, indicates that assistive technology is on the verge of a 

transformative revolution that can benefit all of mankind; but only if we invest in its adoption, 

standardization and accessibility. The emergence of inexpensive technologies such as the 

Internet, wireless broadband, personal digital assistants and global positioning make the vision of 

assistive technology as a “prosthesis for life” a real possibility within the decade. 

 

 

20 Tim Berners-Lee, Massachusetts Institute of Technology W3C Accessibility Initiative, WA1/11/01/2004 http://www.w3.org, accessed 

November 8, 2007.

21 Roberta DePompei, Ph.D., Assistive Technology and Cognitive Disabilities, University of Akron School of Speech-Language Pathology and 

Audiology, Project Number H133A030810, http://www.uaakron.edu/colleges/faa/depts/sslpa/faculty/Depompei.php, accessed November 8, 2007.
9 

Conclusion

Current technology trends reflect a move away from accessible interfaces, just at the time when 

technological advances can provide breakthrough advances for people with intellectual

disabilities. Emerging cognitive technologies have the capacity to improve the quality of life for 

people with intellectual disabilities and other cognitive challenges. Universal design principles 

need to be applied to enable greater customization of user interfaces to address the specific needs 

of individuals with intellectual disabilities. Policy decisions and incentives for accessibility are 

critical components of the commitment to promote the ability of people with intellectual 

disabilities to live full, productive lives. 

Recommendations

1. Convene stakeholders including consumers, caregivers, transdiciplinary practitioners, 

service providers, foundations and trade associations in the field of cognitive technology 

for a national collaborative summit. The stakeholders would develop a more specific 

roadmap for research, development and capacity building. A sample of the objectives of 

the forum includes: 

 

• Devising an open system for digital rights management so accessibility standards may 

be developed while meeting the security concerns that drive the trend toward closed 

systems. 

• Recommending accessible Application Program Interfaces (APIs) and community 

source projects in software development to ensure accessibility while providing for 

private sector proprietary product protection. 

• Developing and promoting cross-platform accessible APIs to reduce substantially the 

cost of accessible software. 

• Recommending Federal incentives such as tax breaks and new grant programs for 

stakeholder partnerships. 

2. Base all public policy regarding information technology accessibility on market driven 

incentives. Harnessing the power of the marketplace and highlighting the financial 

benefits of accessibility in all products meets the needs of all customers, including people 

with intellectual disabilities. In addition to encouraging the marketplace to create 

products that are accessible to everyone, the Committee recommends that the President 

encourage the Interagency Committee on Disability Research (ICDR) to continue 

discussing policies and directions that support efficiency of the marketplace for the 

benefit of people with intellectual disabilities. This may include the following action 

steps: 

• wide dissemination of information about successful projects

• wide dissemination of requests for proposals 
10 

• establishment of policies that set appropriate industry standards and promote valid 

 research

In doing so, market forces, in tandem with well defined accessibility policies and 

practices, will produce business models that provide a clear profit advantage to those who 

comply, and a clear profit disadvantage to those who do not. 

3. Support the continuation of NIDRR’s support of research for the advancement of 

cognitive technologies.
11 

Moving Toward Equity within Education

Least Restrictive Environment

Education is the key to independent living and a high quality of 

life... The Administration will expand access to quality education 

for Americans with disabilities.

President George W. Bush 

New Freedom Initiative

February 1, 2001 

Background and Rationale

All people, including students with intellectual disabilities, desire to be respected and valued by 

those with whom they come into contact. Promoting awareness that all students have value to 

our schools and to our society will help people become more accepting of individual strengths 

and differences. Acceptance of diversity usually develops within the family, then within the 

school environment, and is subsequently carried into the workplace and community. 

Since the enactment of the Education of All Handicapped Children Act in 1975,22 – renamed the

Individuals with Disabilities Education Act (IDEA) in 1990,23 and amended in 1997 and 2004 – 

“more students with disabilities are attending schools in their own neighborhoods – schools 

which may not have been open to them previously. Fewer students with disabilities are in 

separate buildings or separate classrooms on school campuses, and are instead learning in classes 

with their peers.”24

Over the past 30 years, there has been a positive change in the perception and practice of 

including students with intellectual disabilities within the general education classroom. This 

change, however, has been slow. For students with intellectual disabilities, the opportunity to 

attend the neighborhood school and access the general education curriculum in the regular 

classroom is still far behind that of students with other disabilities. The opportunities for these 

students to attend their neighborhood school and engage in general education curriculum within 

the regular classroom will need to be increased if we hope to attain the President’s goals for 

people with disabilities to “participate more fully in the life of their communities and of our 

country” and not be “dismissed or forgotten.” 

 This practice of welcoming, valuing and empowering students with varying 

disabilities in the general education classroom with their non-disabled peers is a direct outgrowth 

of the section of IDEA that addresses “Least Restrictive Environment.” Inclusive education, 

wherein students of varying abilities attend their neighborhood school and take part in social and 

academic learning, is considered by many to be the heart and spirit of Least Restrictive 

Environment (LRE). 

 

22 Public Law 94-142 23 Public Law 101-476 24 “IDEA’s Impact: Thirty Years of Progress in Educating Children with Disabilities Through IDEA,” US Department of Education, Office of 

Special Education and Rehabilitative Services, http://www.ed.gov/policy/speced/leg/idea/history/30html, accessed on September 17, 2007.
12 

Challenges and Opportunities 

The 2005 Annual Report to Congress on the Implementation of the Individuals with Disabilities 

Education Act notes that as of fall 2003, only 11.66 percent of students with intellectual 

disabilities were being served in the most inclusive setting within the public school system. 

Thus, of all students ages six through 21, with any identified degree of intellectual 

disability25served under the IDEA, only a small portion spend as much as 80 percent of their day 

in the regular classroom.26

The Committee believes that segregated programs for students with intellectual disabilities are 

isolating, and lead to more restrictive services and more limited lives within the community. 

Segregated settings do not result in the promotion of students to regular education status over 

time. In other words, more restrictive education settings do not prepare students for less 

restrictive ones; nor do more restrictive education settings tend to promote the most successful 

transition of children and youth, K-12, to post-secondary school, work and community life. 

In the same 2005 Annual Report to Congress cited above, statistics show a wide disparity of 

students with intellectual disabilities in the most inclusive setting from state to state. The 

fluctuation of these students in the most inclusive setting ranges from a low of 3.65 percent in 

Texas, to a high of 59.11 percent in Vermont.27 This presents great challenges for families as 

they move from one state to another, and even from one district to another. The assumption that 

similar provisions of LRE will be available in the new state or district is often dispelled during 

the first meeting with new school personnel. Increased equitability of enactment and 

interpretation regarding LRE under IDEA would ease the transfer of students with intellectual 

disabilities from district to district and state to state. Under IDEA, alternative placements listed 

in the definition of special education and related services include instruction in regular classes, 

special classes, special schools, home instruction, and instruction in hospitals and institutions. 

The continuum of least restrictive educational choices for parents and their children needs to be 

broadened to allow more students to move more fully into inclusive settings. States should 

ensure that, to the maximum extent appropriate, children with intellectual disabilities are 

educated with children without disabilities. A variety of educational placement choices may be 

considered when focusing on Least Restrictive Environment during development of an 

Individualized Education Program (IEP) for students receiving special education services. The 

LRE options that are reviewed and agreed upon by the IEP team should be those which are of the 

most benefit to the individual child, so that he or she and his or her peers, might learn best in an 

environment that is characterized by high expectations, rigorous curriculum and opportunities for 

all students. Special classes, separate schooling, or other removal of children with disabilities 

from the regular educational environment should occur only if the nature or severity of the 

disability is such that education in regular classes with the use of supplementary aids and 

services cannot be achieved satisfactorily. Thus, the objective is not just to have children with 

 

25 The 2005 “Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act” categorizes children with 

intellectual disabilities as children with mental retardation.

26 “27th Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act,” U.S. Department of Education, 

Office of Special Education and Rehabilitation, Office of Special Education Programs, Vol. 2, 2005, pg. 200. 

http://www.ed.gov/about/reports/annual/osep/2005/parts-b-c/index.html, accessed on September 17, 2007 via PDF format. 27 Ibid.
13 

intellectual disabilities stop in to general education classrooms through mainstreaming activities, 

but to be an integral part of the class community, to engage in grade-level content to the best of 

their ability, and to strive toward grade-level standards in accordance with their IEP goals. 

In order for students with intellectual disabilities to realize the benefits of LRE within the regular 

classroom setting, inclusive education must be provided with excellence. Quality inclusive 

education requires that administration, staff, and most important, teachers, be well trained and 

receive sustained support. In an inclusive classroom setting, the learning environment is 

significantly affected by the teacher’s perception and understanding of children with intellectual 

disabilities, and the degree to which the teacher’s perception and understanding influences his or 

her interactions with students. Realizing that the inclusive classroom setting creates by definition 

a broad diversity of student needs, teachers do require this sustained support to create effective 

classroom environments for each student. For example, additional training in special education 

and, specifically, on students with intellectual disabilities, may result in increased awareness and 

appreciation of the value of these students and increased provisions for quality inclusive 

education for all students. Quality inclusive classrooms offer children the opportunity to fully 

experience student life, which helps them formulate a positive self-image and improves their 

academic performance. When students with diverse abilities are included, they come to 

recognize they are of value to their community. Inclusion can benefit all people involved – 

teachers, students, and parents. 

Another important aspect of providing inclusive education in the 21st century is movement 

toward a Universal Design for Learning (UDL). The term universal design refers to the creation 

of places or things that are accessible to as many people as possible, such as speakerphones and 

close-captioned television. When applied to education, the term universal design generally refers 

to elimination of barriers to educational places or materials—for example, providing accessible 

textbooks. More comprehensively, Universal Design for Learning is a research-based 

framework for designing curriculum and instruction – educational goals, methods, materials, and 

assessment – which enables all individuals to gain knowledge, skills, and enthusiasm for 

learning. This is accomplished by simultaneously providing rich supports for learning and 

reducing barriers to the general education curriculum, while maintaining high achievement 

standards for all students. UDL encourages the use of diverse instructional strategies, such as 

differentiated instruction, enabling teachers to provide better access to rigorous curriculum. 

Architects design buildings from the start to be accessible to everybody, avoiding the need to fix 

accessibility problems after the fact. Similarly, educators must view UDL as a process of 

flexible and supportive design for learning that, from the start, allows teachers to meet the needs 

of diverse learners. Thus, UDL helps educators customize their teaching for individual learning 

style differences in students. The embedded UDL features facilitate the efforts of educators to 

better teach and support students with intellectual disabilities. Universal Design for Learning 

uses the power and flexibility to make education more inclusive and effective for all learners.

Many general education teachers may not be prepared to work effectively with students who 

have intellectual disabilities. General education teachers may lack current and on-going training, 

and may not always be equipped to handle the day-to-day reality of meeting the diverse learning 

needs of each child. Teachers will benefit from opportunities to learn about best practices and 

researched-based teaching strategies in differentiated instruction. Access to models of inclusive 
14 

classrooms that promote participation and progress in the general education curriculum help 

prepare teachers and increase their understanding of strategies that work to help students with 

intellectual disabilities reach their full potential.

The October 2002 report of the President’s Commission on Excellence in Special Education 

recommended improvements in the development and dissemination of research findings that will 

increase teacher and parent access to effective educational practices and instructional methods.

28

There has been progress in information dissemination since then, and it is hoped these advances 

will continue to be improved upon, to further the provisions for students with intellectual 

disabilities to learn general education curriculum in the least restrictive environment. General 

education teachers must have access to current research and best practices in order to prepare to 

work effectively with students with intellectual disabilities. Anecdotal evidence suggests that

most colleges and universities require students pursuing a general education degree to take one 

three- to four-hour survey course focused on students with various disabilities. Across the 

country, for teachers entering the education field through alternative route programs, it is likely 

they will have had no formal training that prepares them to effectively teach students with 

intellectual disabilities in an inclusive setting.

Conclusion

Academic and social benefits may be observed for a majority of students when Least Restrictive 

Environment provisions are enacted equitably and when inclusive education is implemented 

effectively.

29 Attitudinal barriers of prejudice break down, friendships develop, and students 

without disabilities are motivated to achieve increased academic and social gains. Successful 

inclusion is then carried from the home and school environment into the workplace and 

community. 

Recommendations

Improve instruction and assessments for students with intellectual disabilities and support and 

promote full, equitable, implementation of the Least Restrictive Environment provisions of 

IDEA by:

1. Encouraging increased use of Universal Design for Learning in the educational 

setting. Use communication and outreach resources of the United States Department of 

Education (ED), as well as cutting edge communication technology such as 

DisabilityInfo.gov, to provide information to state and local departments of education 

regarding the universal design of curriculum, materials, instruction and assessments. 

2. Strengthening information bridges from the Federal Government to state and local 

departments of education, schools, teachers and parents by providing current, researchbased strategies and best practices related to students with intellectual disabilities.

 

28 “A New Era, Revitalizing Special Education for Children and Their Families,” President’s Commission on Excellence in Special Education, 

2002, pp. 59-67, http://www.ed.gov/inits/commissionsboards/whspecialeducation/reports/index,html, accessed on September 17, 2007. 29 Margaret McLaughlin et al, “Effective Education in the Least Restrictive Setting,” K. Charlie Lakin and Ann Turnbull (eds.), National Goals 

and Research for People with Intellectual and Developmental Disabilities, Washington, DC, American Association on Intellectual and 

Developmental Disabilities (formerly American Association on Mental Retardation), 2005, pg. 51.
15 

3. Publishing and fully disseminating findings of the U.S. Department of Education, Office 

of Special Education Programs, of current directed studies and projects related to students 

with intellectual disabilities, such as those that focus on determining what kinds of early 

interventions promote the best results for students with disabilities, and increase 

understanding of access to the general education curriculum for students with significant 

cognitive disabilities, as noted in both the 2004 “New Freedom Initiative: A Progress 

Report”30 and the 2002 President’s Commission on Excellence in Special Education 

Final Report to the President.31

4. Supporting increased technical assistance to facilitate teacher efforts to implement 

evidence-based and promising practices demonstrated in inclusive school models. 

Increasing availability of existing research findings that demonstrate evidence-based and 

promising practices will improve the ability of general education teachers to teach 

students with intellectual disabilities in regular education classrooms.

 

30 “New Freedom Initiative: A Progress Report,” 2004, pp. 4, 17, http://www.whitehouse.gov/infocus/newfreedom/toc-2004.html, accessed on 

September 17, 2007.

31 “A New Era: Revitalizing Special Education for Children and Their Families,” pp. 59-67.
16 

Housing for People with Intellectual Disabilities

Background and Rationale

Historically, people with intellectual disabilities have been denied the opportunity to live as 

independently as possible in their own communities. Many have been limited to remaining in 

large institutions where they live apart from the mainstream community. Others, whose families 

have supported their son or daughter at home into adulthood, ultimately find themselves less a 

part of their community as their parents advance in age—often due to a lack of community 

integration supports and services. This lack of independent housing choices and unnecessary 

isolation is an unfortunate reflection of the lack of value society at large sees in the lives of 

people with intellectual disabilities. Because society often does not view people with intellectual 

disabilities as people with intrinsic value, for many, their isolation continues and they remain 

invisible. 

Being part of the community and living as independently as possible are among the more 

important values and goals shared by people with disabilities, their families, friends and 

advocates. Although housing options for people with intellectual disabilities have increased over 

the past 20 years, there is still need for more affordable community-based residential options that 

will permit them to live and integrate into their communities. As the availability of large stateoperated facilities has declined, so has the state’s role as a residential service provider. Many 

large state facilities have been shut down or have decreased in size, and many more people with 

intellectual disabilities are living in smaller residential settings. For example, in 1977, 83.7 

percent of persons with intellectual disabilities and related developmental disabilities (ID/DD) 

receiving residential services lived in residences of 16 or more people; by 2005, 70.8 percent

lived in residential settings with 6 or fewer people.32 Also, in 1977, 62.9 percent of all residential 

service recipients lived in state residential settings. By 2005, that percentage declined to12.8 

percent.

33 

As the number of state residential settings declined, the number of residential service settings run 

by non-state agencies increased. Of all residential service settings in 2005, 2,469 were operated 

by state agencies, with the remaining 149,853 residential settings operated by non-state 

agencies.34 While these numbers indicate that more people with intellectual disabilities who 

desire to do so are living in community settings than in years past, the data also suggest that 

many others may not have access to the housing they and their families seek. Although the 

overall percentage of those living in large state facilities has declined, 42 states still operate at 

least one such large facility.35 Since the average annual amount needed to care for a person in a 

large state facility is slightly over $148,000, as compared to the lower cost of other residential 

services, this is a major financial drain on resources that could be applied elsewhere.36

 

32 R.W. Prouty et al, “Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2005,” University of 

Minnesota, Research and Training Center on Community Living, Institute on Community Integration, 2006, p. iii. 33 Ibid p. vi. 34 Ibid p. iv. 35 Ibid p. iii. 36 Ibid p. iv.
17 

Another pressing problem is the large number of people still waiting for appropriate housing. 

While numbers specific to intellectual disabilities are not available, a 2005 estimate of people 

with developmental disabilities indicates that approximately 74,000 are on a list for residential 

services.37 Given that approximately 750,000 people with developmental disabilities live with 

an aging parent,38 the number of people waiting for residential services can reasonably be 

expected to grow. 

A major gap exists between the Supplemental Security Income (SSI) on which many people with 

disabilities rely for their basic needs, and the cost of living in a supported environment that 

public programs, alone, cannot meet.39 In many areas of the country, state and local officials 

have concluded that creating and maintaining community residences or group homes for people 

with intellectual disabilities who want them is a crushing financial burden. Public officials are 

often challenged in their efforts to create more group homes or other supported housing for 

people with intellectual disabilities. The expansion, and perhaps even the maintenance, of 

supported apartments or group homes will have to be borne by private efforts or by privatepublic partnerships. Often, non-profit or even for-profit organizations run group homes for 

persons with intellectual disabilities. The cost is often divided among the residents, their 

families, the housing providers and, in some instances the state or local government.

The Olmstead discussion in the President’s New Freedom Initiative recognized the need to create 

more community housing placements to move residents of institutions into more appropriate 

community facilities. In July 2006, through the Money Follows the Person Rebalancing 

Initiative, the Centers for Medicare and Medicaid Services (CMS) in the U.S. Department of 

Health and Human Services dedicated $1.75 billion over the next five years to move more than 

100,000 people with disabilities out of nursing homes and other institutional settings and into 

community-based settings. While this represents significant progress, more can be done by 

building upon that momentum. 

Many states and local communities have made commendable efforts to provide affordable 

housing. Generally, however, those efforts have not encompassed housing for persons with 

intellectual disabilities, even though they are among those with the lowest incomes and most in 

need of affordable housing. For example, the four million Americans with disabilities who rely 

on monthly SSI for all their basic needs would have to pay 109.6 percent of their entire monthly 

income to rent a modest one-bedroom unit.40 Many affordable housing efforts provide housing 

for low-income families, while ignoring the needs of people with intellectual disabilities who 

clearly meet the definition of those in need of affordable housing. 

Many people with intellectual disabilities need varying levels of staff support. This support can 

range from 24-hour a day staff for individuals with profound impairment to periodic support for 

individuals with moderate or mild levels of disability. But support staff is essential to the 

provision of a safe and inclusive environment. 

 

37 Ibid p. vi. 38 “Fact Sheet – Housing for People with Disabilities: The Crisis Escalates,” The Arc, 2007 

http://www.thearc.org/NetCommunity/Page.aspx?&pid=1343&srcid=217, accessed on October 18, 2007. 39 Ann O’Hara and Emily Cooper, “Priced Out in 2004: The Housing Crisis for People with Disabilities,” Technical Assistance Collaborative, 

Inc., Consortium for Citizens with Disabilities Housing Task Force, 2006. p. I (Forward by Senator Jack Reed). 40 Ibid p. 40
18 

Supported housing is facing a national shortage of direct support professionals. In 2000, the 

median hourly wage of personal and home care aides was $7.50 and the median hourly wage of 

home health aides was $8.23.41 Low wages in this field contribute to staff shortages and high 

turnover. Without qualified professionals, community-based programs may be unable to survive, 

or forced to employ people who may not have all the necessary skills. In many areas of the 

country, particularly those with a high cost of living, employers may not have the necessary 

funds in their budget to hire and retain well-trained support staff. 

In homes supported by Medicaid waiver money, often the funds are not sufficient to attract and 

retain well-qualified support staff to provide rehabilitation services. Medicaid rules prohibit 

residents from supplementing the cost of these services with personal Medicaid dollars as the 

payments made directly to the providers are considered payment in full. In those group homes 

where expenses are paid by the residents who receive SSI and/or another source of income, 

rather than by Medicaid, the cost of attracting and retaining good staff must be passed on to 

residents. These residents are among the lowest paid in our society, and often in only part-time 

employment, and unable to afford necessary increases. And while some may have parents, 

siblings, or friends able and willing to subsidize those costs, many simply do not. Costs for staff 

and for the maintenance of group homes continue to rise. For housing providers, the yearly 

increase in the cost of living requires raising staff salaries. The rising costs of gasoline, heating 

oil or gas, and electricity must be matched by increases in income to permit the providers of 

group homes to keep pace. 

Given the factors listed above, many adults with intellectual disabilities who desire independent 

living have no reasonable opportunity to live away from their parents’ homes or institutional 

settings, and thereby are deprived of a greater degree of independence. In addition to providing 

community-based housing, group homes also afford significant social interaction for adults with 

intellectual disabilities. Many adults who remain at home may be deprived of significant social 

interactions. In turn, parents who, into their old age, choose to care for their adult children with 

intellectual disabilities may themselves be deprived of social opportunities that many adults take 

for granted. 

Challenges and Opportunities

Many providers of services and supports to people with intellectual disabilities advocate moving 

to more consumer-based housing options. Even when housing options are available, people with 

intellectual disabilities often are not afforded control over, or a voice in, basic decisions 

regarding where they live, with whom they live, and how they spend their time. Much of the 

housing available to people with intellectual disabilities remains primarily service system 

controlled, as opposed to consumer controlled. In addition, in many instances individuals who 

choose to live in Federal and state-supported housing typically face rigid entrance and exit 

criteria. When personal support is available, it is often one size fits all and linked to the housing, 

making it difficult for people receiving assistance to exercise choice about their housing options, 

or sometimes to remain in their preferred housing when their individual needs change. The 

 

41 “Fact Sheet – Direct Support Workers,” The Arc, 2007, http://209.190.209.4/NetCommunity/Document.Doc?&id=137, accessed on 

October 18, 2007.
19 

individual’s preferred housing choices, or those of his or her family, are often defeated by the 

structure of the housing opportunities provided. 

Because most people with intellectual disabilities have limited financial resources with which to 

own or lease their own homes, it is frequently necessary to identify and combine complex 

financial mechanisms to bridge the gap between their income and the real cost of housing. These 

mechanisms may include a combination of low interest rate financing, government or private 

grants, or rental or homeownership subsidies. Some states have made an effort to help 

individuals with intellectual disabilities secure housing of their own, either rented individually or 

owned. Tenant-based rental assistance, Section 8 of the U.S. Housing Act, administered by the 

U.S. Department of Housing and Urban Development, state trust fund resources, and State tax 

credits have been used.

 

Enhancing consumer control provides the individual with more options to choose whom to live 

with, where to live, and to control the choice of necessary support staff. Self-advocacy 

organizations are critical to advocating for community-based living, self-determination, and 

effective services and supports at the local, state, and national level. However, this effort will 

nonetheless need the kind of governmental and private assistance described above in the area of 

independent housing opportunities. The creativity of the public and private sector is also needed

to improve the lives of people with intellectual disabilities and their families. Governors’ 

councils on developmental disabilities, present in every state, may prove to be a particularly 

powerful way of reaching individuals with intellectual disabilities and the organizations that 

represent them, along with a whole host of social service providers, local government agencies, 

and local and state decision-makers from the non-profit, public, and private sectors. 

Conclusion

The value society gives individuals is most often reflected in the efforts society makes to include 

those individuals among us. With stable and supported housing, people with intellectual 

disabilities are able to achieve other important goals, including advanced education, job training, 

and employment. When we encourage the participation of people with intellectual disabilities in 

all aspects of community living, welcome them into their chosen neighborhoods and schools, and 

invite them to join and actively participate in government and civic organizations, it reflects an 

acknowledgment that their contribution and friendship is of value to us. Living in the 

community among family, friends and neighbors, is the preferred housing option for all people, 

including people with intellectual disabilities.

 

Recommendations

1. Improve access to resources to increase the stock of supported community-based housing 

The Section 811 Supportive Housing Program for Persons with Disabilities, operated by 

the Department of Housing and Urban Development (HUD), provides affordable and 

accessible housing for persons with severe disabilities. Most Section 811 participants 

live in supportive housing units developed and managed by non-profits that agree to 

provide housing for people with disabilities for a minimum of 40 years. This program 
20 

can provide more units of supported housing appropriate for people with intellectual 

disabilities at reasonable cost. 

In order for this program to be more effective, the regulatory burdens placed on nonprofit grantees must be streamlined. Allowed overhead and profit margins are below 

those common in rental units built in the private sector, and other construction and 

settlement service providers must wait until final closing to be paid (sometimes three 

years after completion of the work). These factors tend to tie up money in the 811 

pipeline, and encourage the Office of Management and Budget to consider the program 

ineffective at expending its resources in a timely manner. Program reform should address 

these issues. Such reform would allow Section 811 grantees to provide more effective

support to people with intellectual disabilities. 

The Section 8 program, which provides individuals with vouchers to bridge the gap 

between income and rent, can also be a critical player in the drive to provide private, 

community-based housing for people with intellectual disabilities. Individuals may use 

vouchers to secure adequate housing for themselves, or may combine vouchers with 

others (roommates) to increase their purchasing power. 

The Federal Government should examine its programs that provide mortgage assistance 

to people with disabilities to make sure that people with intellectual disabilities are able 

to take full advantage of these programs. 

The Federal Government should also, perhaps as a part of the New Freedom Initiative, 

open discussions with state and local governments about including people with 

intellectual disabilities when they create programs that increase the amount of affordable 

housing, or otherwise reduce the cost of housing for people with low incomes. This may 

be used as an opportunity to publicize the Federal rental or mortgage assistance programs 

as a way to help address the dire need for supported housing for people with intellectual 

disabilities. While state and local public housing authorities are probably aware of these 

HUD programs, they may not be cognizant of their potential to create supported housing 

for people with intellectual disabilities. 

Finally, the Federal Government should look at creative use of tax benefits or tax credits 

to reduce the cost the private sector may bear in providing housing for people with 

intellectual disabilities. Currently, developers experienced in the use of tax credits avoid 

HUD programs because of what is perceived as their regulatory burden; thus, HUD 

should work to remove any unnecessary or cumbersome regulation and work with the 

private sector to efficiently navigate the process and overcome any false perceptions. 

2. Improve resources for staff support 

For many residents of supported housing, Medicaid waiver slots and payments are 

critical. Medicaid payments provide the annual income, in some instances supported by 

part-time work, that residents need to afford supported housing. It is essential not only 

that HHS and state governments provide reasonable levels of funding through Medicaid, 
21 

but also that increased numbers of waiver slots are provided so that people with 

intellectual disabilities can get necessary supports to permit them to seek housing outside 

of institutional settings. Restoration of supportive services grants through HUD’s 811 

program should also be considered.

The service of direct-care workers is supported by several Federal Government initiatives 

and programs, such as: a) the New Freedom Initiative that assists States in developing 

systems that support community-based care alternatives, training, support and retention 

of direct service workers with an emphasis on the provision of a health care benefit for 

direct service workers; and b) Medicare’s Quality Improvement Organization (QIO) 

Program: Maximizing Potential intended to focus on offering, through its infrastructure 

in each state, technical assistance to providers and practitioners aimed at building their 

capacity for quality improvement. The Federal Government should continue exploring 

ways to support the employment of direct-care service providers. These positions 

continue to be underpaid and underappreciated. There may be innovative, yet practical, 

ways for Federal agencies involved in education and employment activities to 

demonstrate the value and dignity of these jobs, and to help states, localities, and the 

private sector support direct-care services as a career. The Federal Government should 

maintain the lead in this effort, perhaps through grants, student loans or other forms of 

assistance to states, educational institutions, or directly to individuals pursuing these 

careers.

3. Support and provide incentives for private-public partnerships 

In some areas of the country, private-public partnerships have been very successful in 

providing housing for people with intellectual disabilities. These partnerships have the 

potential to expand housing opportunities for people with intellectual disabilities.

The Federal Government should explore ways to publicize the need for providing 

housing for people with intellectual disabilities through public-private partnerships. The 

Federal Government has demonstrated to the public that it has the capacity to help those 

in need. The Thousand Points of Light concept and subsequent movement were very 

effective in illustrating that the private sector can help those in need, and that government 

is not the only answer to society’s needs. The Federal Government can build upon the 

successes of the New Freedom Initiative by encouraging private sector participation and 

by increasing public awareness of the dire need for supported housing for people with 

intellectual disabilities. 
22 

The Impact of Availability and Accessibility of the Medicaid Program and 

Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Services 

on the Lives of People with Intellectual Disabilities

Every life is a gift and must be valued. Government should 

improve the access of every child to the best health care that will 

assist in prevention and/or mitigation of the adverse effects of 

intellectual disabilities.

 Sharman Word Dennis

Background

Medicaid is a federally funded state-run program, guided by broad Federal guidelines, that 

provides medical assistance for individuals and families with limited incomes and resources. 

Medicaid finances health coverage for 27 million, or more than one in four, of America’s 

children. One of the central services of the Medicaid program is the child health component that 

provides screening of children for a variety of conditions which, if not discovered and treated 

early in the life of a child, can result in significant developmental and health problems. This 

service, known as Early and Periodic Screening, Diagnosis, and Treatment (EPSDT), calls for 

states to provide children and adolescents access to comprehensive, periodic evaluations of 

health, developmental and nutritional status, as well as vision, hearing, and dental services. 

Under Federal regulations, states are given some flexibility in determining the periodicity or 

timing of the health visits and screenings, but the content of screening services is mandated by 

law. 

Challenges and Opportunities

Data from the Centers for Disease Control and Prevention (CDC) found that, in 2000 in 

metropolitan Atlanta, Georgia, approximately 1 percent of children age 8-years-old have 

intellectual disabilities. Intellectual disabilities are more common in boys than in girls, and more 

common in black children than in white children, with the majority of children having mild 

intellectual disabilities (approximately 60 percent).42 EPSDT services can provide much needed 

health care for Medicaid-eligible children with intellectual disabilities, but many of these 

children and their families are not utilizing these valuable services. 

EPSDT Services

For more than 30 years, Federal law has provided comprehensive health coverage for lowincome children through Medicaid for children under age 21.43

 

42 T. Karapurkar et al, “Prevalence of Four Developmental Disabilities Among Children Aged 8 Years—Metropolitan Atlanta Developmental 

Disabilities Surveillance Program, 1996 and 2000,” Morbidity and Mortality Weekly Report, 2006, 55 (S S01), pp. 1-9, 

 Early and Periodic Screening, 

Diagnostic, and Treatment services and supports components are designed to target health 

conditions and problems for which growing children are at risk including, but not necessarily 

limited to iron deficiency, obesity, lead poisoning, and dental disease. Another important 

objective of EPSDT is early 

http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5501a1.htm, accessed on October 31, 2007. 43 Public Law 90-248, the Social Security Amendments of 1967.
23 

detection and correction of conditions that can hinder a child’s learning and development, such 

as vision and hearing problems. For children with intellectual disabilities, EPSDT is an

important resource in identifying the need for essential medical and supportive services, and in 

making these services available and accessible.44 

The federally required components that constitute an EPSDT screen include a comprehensive 

health and developmental history, a comprehensive unclothed physical examination, appropriate 

immunizations, laboratory tests (including a blood lead-level assessment), and health 

education.45

Some children with intellectual disabilities have speech, hearing and language challenges, vision 

impairment issues due to congenital cataracts and/or nystagmus, and motoric issues that result 

from low muscle tonicity. Many of these conditions can be detected through screenings and 

appropriate treatment can be provided, under EPSDT, to prevent, minimize, or reduce the 

negative impact of disability. Other required EPSDT services include:

• Vision Services, including screening, diagnosis, treatment, and eyeglasses. 

• Dental Services, including screening, pain management, and treatment of infections, 

restoration, and maintenance. 

• Hearing Services, including screening diagnosis, treatment, and hearing aids.46 

• Other necessary health care, diagnosis services, treatment, and measures described in section 

1905(a) of the Act to correct or ameliorate defects, and physical and mental illnesses and 

conditions discovered by the screening services.47 

Some Target Populations for EPSDT Services to Children and Young Adults

 

Newborn Infants and Children at Risk of Developing Intellectual Disabilities 

Many conditions that cause or influence the occurrence of intellectual disabilities are 

preventable. EPSDT screenings, interventions and therapies can prevent intellectual disabilities, 

or mitigate their impact. For example, correction of impaired vision or hearing loss in a child 

will enable the child to learn more easily and thrive in school, which then leads to improvement 

in the child’s social and adaptive skills. Also, screening, diagnosis and treatment for lead 

poisoning, a known cause of intellectual disability, can prevent the occurrence of this disability. 

Children and Youth with Intellectual Disabilities

Early and Periodic Screening, Diagnostic, and Treatment services are provided to Medicaideligible children who already have intellectual disabilities. These children not only need good 

health care, but also the kinds of screenings, interventions and therapies EPSDT provides. 

 

44 Children with Disabilities: Medicaid Can Offer Important Benefits and Services (GAO/T-HEHS-00-152, 

July 12, 2000).

45 Medicaid Early & Periodic Screening & Diagnostic Treatment Benefit, BENEFITS, 

http://www.cms.hhs.gov/MedicaidEarlyPeriodScm/02_Benefits.asp#TopOfPage, accessed on October 31, 2007. (SSA §1905(r)). 46 Ibid. 47 Ibid.
24 

Teenagers who Become Pregnant, and Their Unborn Children 

Teenagers, are already Medicaid eligible, who become pregnant and are eligible for EPSDT 

services can receive appropriate pre-natal care, and thereby reduce the risk of giving birth to a 

child with intellectual disabilities.

Conclusion

When available and accessible, the Early and Periodic Screening, Diagnostic, and Treatment 

services provided through the Medicaid Program can be effective in the prevention and early 

identification of intellectual disabilities. Comprehensive health and developmental histories, a 

comprehensive unclothed physical examination, appropriate immunizations, laboratory tests 

(including a blood lead-level assessment), and health education and other required EPSDT 

services effectively identify numerous causes of intellectual disabilities including, but not 

necessarily limited to: genetic conditions, problems experienced during pregnancy, problems 

during birth, health problems, and exposure to environmental toxins. 

EPSDT services are underutilized throughout the United States in communities of need, and by 

people in need. Effective and consistent early and periodic screening, diagnostic, and treatment 

services will reduce the incidence and prevalence of intellectual disabilities, and ameliorate 

concomitant conditions. 

Recommendations

1. Encourage the Centers for Medicare and Medicaid Services (CMS) to develop a team to: 

• Continue collaborating with the National Association of State Directors of Medicaid

to collect and disseminate information on individual state EPSDT utilization rates for 

eligible populations; and expand this activity to include collection and dissemination 

of information on utilization rates by service (screening, diagnosis, treatment). 

Funding should be made available for this expanded activity. 

 

• Collect and disseminate existing published research on disease/disability prevention 

outcomes related to EPSDT services.

• suggest, support and/or fund research in collaboration with NIH and/or non-public 

research entities that informs state policy makers and the general public on whether 

there is a correlation between access to EPSDT-funded services and reduced 

incidence and prevalence rates in intellectual disabilities.

2. Encourage CMS to provide incentives that support Medicaid-participating states with less 

than 50 percent participation rates to actively pursue efforts to increase, by 5 percent

annually, the participation of Medicaid-eligible children, especially in the area of 

newborns, infants and toddlers, and teenagers and young adults under age 21 who are 

pregnant or may become pregnant, to ensure greater access to and utilization of EPSDT 

related health services.
25 

3. Encourage CMS to develop and sponsor a national recognition award for states that have 

implemented EPSDT services as an effective tool to reduce the incidence and prevalence 

of intellectual disabilities. Services and supports implemented by states highlighted with 

a recognition award should be widely publicized as best practices to local and state 

Medicaid agencies.
26 

SECTION II: Effective and Timely Application of Basic Research 

Basic research is fundamental to improving the lives and health of people with intellectual 

disabilities. Research advances have the ability to improve health status, functional ability and 

quality of life for Americans with intellectual disabilities – advances that may take the form of 

new preventive approaches, adaptations, treatments or cures. There is a balance between 

scientific discovery in basic research and application of the discovery through translational 

research. Government is uniquely positioned to promote the translation of new scientific 

knowledge into tangible benefits for people with intellectual disabilities. It is imperative that 

government encourage new technologies to broaden applications of existing compounds, and to 

ensure that valuable scientific discoveries promptly transition from the basic scientist to the 

clinician. By investing in research to benefit people with intellectual disabilities, the Federal 

Government acknowledges the inherent value of people with intellectual disabilities in society 

and provides the means for a healthier future. 

 

Background and Rationale

Research moves along a continuum from the most basic to increasingly applied investigations. 

Basic research – the fundamental pieces of knowledge discovered by laboratory scientists - 

becomes applied when it is translated into useful interventions. Frequently, however, there is a 

long delay in converting or translating research findings into useful applications. For example, it 

took decades to translate the initial discovery that penicillium mold kills bacteria into the 

development of the drug called penicillin. 

The goal of translational research is to take the discoveries made at the laboratory bench and 

determine how they might be applied to preventing, managing or ameliorating the effects of 

disease or disability. A second, and equally important goal, is to encourage adoption of clinical 

research findings into community practice. The goals of translational research have been 

hindered on several fronts. Many basic scientists, who carry out studies in the laboratory, do not 

have the training to test the safety and efficacy of experimental therapies they may have 

developed. Likewise, many clinical researchers, who carry out their studies in patients, do not 

have seamless access to findings that have come out of the research lab. Finally, there has not 

been an infrastructure in place to facilitate an effective continuum of research from bench to 

bedside to community. 

Scientific discoveries must be translated into practical applications in order to bridge the gap 

from discovery to delivery and it must be done expeditiously. The following examples 

demonstrate the power of translational research to improve the daily lives of individuals with 

intellectual disabilities:

The link between basic science research and community intervention 

Intellectual disability is really a symptom for which there are numerous underlying causes, some 

of which are diagnosable genetic syndromes. Over the past decade, there has been increasing 

recognition of specific behavioral and cognitive features associated with many of these 

syndromes. Research into syndrome-specific behaviors and learning styles provides a 
27 

customized approach to meeting the needs of individuals, rather than the general, one size fits all 

approaches that have previously been applied to individuals with intellectual disabilities. For 

example:

• People with Smith-Magenis syndromes, a developmental disorder that affects many parts of 

the body and is sometimes accompanied by intellectual disabilities, often severely bite or 

pick at their fingernails and toenails. This behavior appears to be related to problems with 

nerve functioning in the hands and feet due to the deletion of part of chromosome 17. Such 

basic research knowledge helps to focus on the physiological causes of self-injurious 

behavior in Smith-Magenis syndrome, rather than simply trying to alleviate the behavior 

without understanding the reason for it.48

• Educators have found greater success in teaching reading to children with fragile X 

syndrome when they use a whole word approach versus traditional phonics. Laboratory 

research laid the foundation for this customized educational approach when scientists 

identified the deficits in sequential processing associated with fragile X syndrome.49 

The link between basic science research, diagnosis and prognosis 

An early diagnosis helps a family understand their child’s therapeutic, educational and social 

needs. Etiologically, however, people with intellectual disabilities are a heterogeneous group. 

There are occasions when physicians cannot provide a definitive medical diagnosis, and the 

current state of knowledge and technology is insufficient for the task. The reasons vary. Some 

children will have a number of problems that do not fit into one specific condition; rare 

conditions may have no identified diagnostic indicators; there are substantial variations in the 

degree to which a child may be affected by a disorder or syndrome impeding a diagnosis; certain 

identifying features may not appear until later in the child’s development, resulting in a late 

diagnosis and missed opportunity for early intervention. 

Many parents have described their feelings of frustration as they are referred from one specialist 

to another, anxiously seeking a diagnosis. Without this information parents can find it difficult to 

obtain the services and supports that will maximize their child’s development and inclusion. 

Undeniably, eligibility criteria for some state and Federal programs are based on the presence of 

specified medical diagnoses. For example:

• Some clinical conditions can be definitively confirmed. The diagnosis of fragile X 

syndrome is confirmed by molecular genetic testing of the fragile X mental retardation 1

(FMR1) gene. Early identification of the syndrome allows for timely intervention and 

involvement in programs developed specifically for children with fragile X syndrome. On 

the other hand, clinical conditions for which there are no definitive diagnoses present 

ambiguities. Autism Spectrum Disorder (ASD), for instance, has no specific diagnostic 

test. Although studies on ASD have provided evidence for a strong genetic component, 

 

48 E. Dykens et al, Genetics and Mental Retardation Syndrome: A New Look at Behavior and Interventions, Baltimore, MD, Brookes Publishing 

Company, 2001.

49 Ibid.
28 

and a priority for ASD research is finding a biologic marker for the disorder, there is no 

such medical test currently available to unequivocally diagnose ASD. Observations and 

reports of behavior are the only methods for screening and diagnosing ASD. But 

observational methods are subject to problems of reliability and validity and can often 

present language and cultural barriers that impede accurate assessment. There are many 

educational and therapeutic programs that have been developed specifically for children 

with ASD, and without an accurate assessment of the condition, these useful strategies 

will be overlooked. In the case of ASD, research that eventually leads to a definitive 

diagnosis will help reduce reliance on less valid assessments, help families receive 

appropriate services, and help reduce disparities in services across populations and states. 

• Traumatic brain injury (TBI) is a leading cause of intellectual disability among infants 

and young children. Proper diagnosis of TBI at this age is difficult, even for experienced 

physicians, due to the subtleties of the injury and the developmental stage of the infant or 

child. However, laboratory scientists discovered that the presence of TBI can be detected 

by measuring the levels of specific biomarkers in the blood. This line of research is now 

being pursued by clinicians and preliminary results are promising. The researchers 

hypothesize that a positive biomarker test suggests the presence of brain injury and the 

need for more intensive evaluation. Although the research is still in its infancy, if the 

approach is successful, it will help to reduce the incidence of missed diagnosis of TBI 

and ultimately lead to timely intervention during a time when the young brain is still 

developing.50

 

Continuing research is needed to explore environmental and familial risk factors, MRI findings, 

and biochemical changes associated with intellectual disability. Through this line of research, 

hopefully, science will provide greater understanding of all clinical conditions behind intellectual 

disability. Expeditious application of research findings will help reduce barriers to diagnosis and 

improve timely access to appropriate medical, educational and social interventions. 

Challenges and Opportunities

While there can be many reasons important research findings are not translated into useful 

application or why the findings fail to influence practice or policy, the roadblocks tend to fall 

into four areas – coordination, dissemination, accessibility and technology transfer. 

Coordination 

Many factors interact to produce intellectual disabilities, such as socio-environmental (adverse 

pregnancy environments or nutrition, for instance) and genetic factors (gender or genotypes, for 

instance). Therefore, the scientific study of intellectual disability involves researchers from 

multiple perspectives. However, there is not always communication and coordination among the 

body of researchers or among the agencies that fund the research. Often, there are no incentives 

to communicate or coordinate with each other. The reality of the scientific process is that most 

 

50 Improving the Diagnosis and Prognosis of Inflicted Trauma in Infants: A five year grant awarded by the Centers 

for Disease Control & Prevention to the Center for Injury Research and Control at Children’s Hospital of Pittsburgh, 

Patrick Kochanek and Thomas Songer, Investigators, 

http://www.neurosurgery.pitt.edu/research/projects/clinical_research/circl_infant_trauma.html, accessed May 30, 2007.
29 

discoveries and breakthroughs are built on basic knowledge created over multiple years by 

multitudes of scientists. Better collaboration between researchers will hasten the translational 

pathway between basic science and interventions to improve the health and quality of life for 

people with intellectual disabilities. 

Dissemination 

Most research findings appear only in targeted academic or scientific journals with little 

distribution beyond the immediate scientific community. For example, a genetic breakthrough 

might be communicated within the genetics literature and never reach the environmental 

researcher studying the interaction of genetics and environment. Research findings do not 

consistently or systematically reach the larger research domain and certainly not the larger public 

domain. Little emphasis is placed on linking research into non-research networks and contexts. 

Furthermore, there is a well-known bias against disseminating negative research findings versus 

positive results. Negative findings are those that do not confirm their hypotheses or demonstrate 

statistically significant effects. In essence, these are experimental failures. The bias can be found 

among scientific editors who do not publish negative findings and the public which shows little 

interest in failure. Yet failure in science and medicine is exceedingly important. One of the most 

important advantages of making failure known is that such knowledge will lead to abandoning 

ineffective approaches or therapies. Conversely, shielding scientific failure from the larger 

community fosters unnecessary repetition of research, allows wrong beliefs to persist, and slows 

technological progress. The Federal Government is in a unique position to encourage 

investigators to present negative findings at conferences, editors to publish them, and interested 

communities to pay attention because negative studies provide major impetus for further 

research. 

Medical research can and should be disseminated as efficiently, effectively, and equitably as 

possible. Published discoveries and ideas are the foundation for future progress; the more widely 

and freely accessible research findings are, the greater their value to researchers, clinicians, 

policymakers, and the public. Broadened dissemination of research findings will facilitate basic 

and clinical research, and accelerate the development of innovations that can positively impact 

the lives of people with intellectual disabilities. 

Accessibility

Gaps in the accessibility of research findings impede the application of emerging good practices. 

The gap exists, in part, because a lag of several years exists before published research influences 

practice. Furthermore, findings are not often communicated in a way that they effectively inform 

decisions about policy or practice. There is a general failure to disseminate the results of research 

to practitioners, and then to ensure that this dissemination leads to desired changes in practice. A 

gap exists between research knowledge on the one hand and its impact on people with 

intellectual disabilities on the other. Closing the information gap between researchers and 

practitioners is a necessary step if evidence-based innovation is to truly improve the lives of 

people with intellectual disabilities.
30 

Technology Transfer

In the overall research framework, basic science research in the public sector traditionally leads 

to new and innovative technology applications in the private sector. Private companies are 

ultimately the organizations that commercialize research technology and bring new discoveries 

to the marketplace. This process of transferring technology from federally funded research 

centers into the private sector has resulted in numerous innovations in health care. However, how 

the transfer occurs is not always well understood. Technological innovations that might have 

promising applications for people with intellectual disabilities often fail to get transferred to the 

private sector. There could be several reasons for this failure. Often, knowledge about the 

technology is not widely disseminated, nor is it disseminated in a timely manner, leading to a 

lack of awareness regarding the innovation. In other instances, the failure occurs at the 

incubation stage, because of lack of support. Sometimes, there are simply no effective channels 

for the technology transfer. 

Effective transfer of technology from the public research system to the private sector is one way 

to do more with less. It can bring the benefits of basic research in the public sector to people with 

intellectual disabilities more quickly, and help achieve the overall intellectual disability research 

mission in an era of relatively scarce public resources. A number of methods are helpful in 

achieving this goal - direct communication between scientists and end users (i.e., individuals, 

families, and people who work in the field of intellectual disability), networking among scientists 

from multiple disciplines, supporting cooperative research, and expediting intellectual property 

instruments such as patenting and licensing. The existence of effective channels and models of 

technology transfer would greatly accelerate the application of basic research to end products 

and services beneficial to Americans with intellectual disabilities. 

Despite active research in the field of disability, the combination of these four factors results in a 

vast amount of research that does not filter down to the primary stakeholders – people with 

intellectual disabilities, their families, service providers, educators, health care professionals and 

related researchers. Each of these groups offers unique perspectives, knowledge, and experiences 

that will potentially inform and challenge new discoveries and deliveries. The net effect is that 

individuals with intellectual disabilities are not benefiting from research as fully as they could. 

Moreover, the public receives much less return on their investment than is possible. 

If policymakers fail to understand the importance of the continuum of basic, applied, and 

translational research, the funding and policies that keep discoveries moving forward will always 

be at risk. Government must work to mitigate this risk.

Model Programs

Encouragingly, the Federal Government has in place several programs with the ability to 

facilitate an intensified focus on translational research. 

Developmental Disabilities Research Centers (the Centers)

The Developmental Disabilities Research Centers, supported by the National Institute on Child 

Health and Human Development (NICHD) within the National Institutes of Health (NIH), 

represents America’s first sustained and integrated effort to prevent and treat disabilities
31 

through biomedical and behavioral research. Today they are the world’s largest concentration of 

scientific expertise in the fields of intellectual and developmental disabilities. The scope of the 

research conducted at the 20 Centers encompasses every known major dimension of mental 

retardation. These Centers, and the network they form, substantially foster communication, 

innovation, and excellence in research. They work collaboratively on numerous research 

projects, and together with the Society for Developmental Pediatrics, produce the quarterly 

publication, “Mental Retardation and Developmental Disabilities Research Reviews.” 

Furthermore, the Centers are engaged in a very important mission - training the next generation 

of scientific investigators and clinicians in this area of great importance to America’s children 

and families.

Over the last three decades there has been an impressive payoff in the Federal investment in the 

Developmental Disabilities Research Centers. Many disorders that cause intellectual disabilities 

can now be prevented or treated to improve developmental outcomes. The Centers’ scientific 

achievements have helped improve the quality of life for individuals and families affected by 

disabilities. 

Leadership Education and Neural-Developmental Centers (LENDs)

The Leadership Education and Neural-Developmental Centers, funded through the Maternal and 

Child Health Bureau (MCHB), ensure that professionals across eleven major disciplines have the 

necessary training to meet the needs of children with neurodevelopmental and other related 

disabilities. They address the unique needs of these children and their families, and provide 

culturally competent interdisciplinary services. The distinguishing characteristic of these 35 

programs is that they are associated with a medical school and/or a children's hospital, and they 

are the foundation for the interdisciplinary training of developmental pediatricians and clinicians 

that work in the area of developmental and related disabilities in this country. 

One particularly encouraging innovation is the use of family members of people with 

neurodevelopmental disabilities as co-instructors of their interdisciplinary seminars. This 

provides a direct connection and relationship between trainees and family members, and 

facilitates a better understanding of the issues that these families face. 

University Centers for Excellence in Developmental Disabilities (University Centers)

The University Centers for Excellence in Developmental Disabilities Education, Research and 

Service, funded primarily by the U.S. Department of Health and Human Services (DHHS), 

Administration on Developmental Disabilities (ADD), conduct research and training, 

disseminate best practices and research results, and demonstrate exemplary clinical practices and 

community services in the areas of intellectual and developmental disabilities. These 67 centers 

provide technical assistance at community, state, and national levels and typically have extensive 

relationships with Federal agencies, state agencies, public schools, advocacy groups, and parent 

groups in their state. They are electronically connected with each other, as well as their 

individual state organizations, and could be used, in a very quick and efficient way, to translate 

and disseminate research findings, practices, materials and information to the community, 

families and individuals with intellectual disabilities who could benefit from them most. 

Furthermore, ADD has revealed that some University Centers have committed to doing 

participatory research with families. This would bring families into the research process from 
32 

the very beginning and allow them to participate throughout the entire length of the study, from 

contributing to the design of the research questions, to disseminating the results. 

Conclusion

The work of the Developmental Disabilities Research Centers, LENDs, and University Centers 

has contributed much over the last several decades and they represent a bright future for 

scientific discovery, translational research and improved systems of services and supports for 

people with intellectual disabilities. However, much can be done to more effectively use these 

resources and more expeditiously translate research into practical application to improve the 

lives of people with intellectual disabilities. 

Many factors interact to produce intellectual disabilities, such as socio-environmental (adverse 

pregnancy environments or nutrition for instance) and genetic factors (gender or genotypes for 

instance). Therefore, the scientific study of intellectual disabilities involves researchers from 

multiple perspectives. The Committee believes that better collaboration between researchers will 

hasten the translational pathway between basic science and interventions to improve health and 

quality of life for people with intellectual disabilities.

Investing in people with intellectual disabilities by promoting the expeditious application of 

research will produce new answers and new technologies. It will provide insight into key areas of 

medical and behavioral investigation. It will improve options for families and help to develop 

effective policies. Benefits that might be achieved include: a) translation of new diagnostic and 

prognostic markers into screening and early intervention programs; b) translation of new insights 

in etiology into the development of community health preventive practices; and c) translation of 

identified genes into new therapeutic targets. 

The Committee urges the President to continue the Federal Government’s commitment to 

honoring the inherent God given value of people with intellectual disabilities through increased 

investment in the health and well-being of their future. 

Recommendations

1. Foster continued intensified efforts to streamline the translation of basic 

neuroscientific findings into clinical applications for use by people with intellectual 

disabilities, their families or those who work with them. Clinical or community 

applications can include prevention, detection, treatment, interventions or adaptations.

2. Encourage the vigorous pursuit and development of new technologies and approaches 

for early screening, detection, diagnosis, amelioration and treatment of people with 

intellectual disabilities, particularly as applicable to improvements in drug 

development and psychopharmacological approaches for the benefit of people with 

intellectual disabilities.
33 

3. Encourage Congress to improve research and dissemination research that will promote 

equitable access to services and supports through:

• improvement of diagnostic categories and culturally competent assessment 

instruments for the benefit of people with intellectual disabilities; and

• standardization of eligibility criteria across program and funding streams 

for the benefit of people with intellectual disabilities.

4. Expedite intellectual disability research translation to promote and foster consistency 

in appropriateness, effectiveness and efficiency in delivery of services – medical,

education, behavioral -- for the benefit of people with intellectual disabilities from any 

services that will enhance the quality of life. 

5. Urge all Federal research agencies supporting biomedical and behavioral science research 

to coordinate and expedite translation of research findings to appropriate service and 

education oriented government agencies for the benefit of all people with intellectual 

disabilities. Such coordination and expeditious translation will enhance the quality of life 

for each individual with intellectual disabilities as well as ensure that the Federal 

government understands the value of each person with intellectual disabilities. 

6. Urge all Federal service and education agencies and Federal clearinghouses to receive 

and review, as permissible, research findings and to expedite research translation into 

readily utilizable health, educational, social and other related applications for the 

benefit of people with intellectual disabilities.

 

7. Encourage contributions from non-government sources to expedite the translation of 

research findings into clinical and other applications. This includes identifying and 

enlisting private sector research enterprises, private voluntary organizations, and private 

foundations, and quasi- government agencies, that seek to improve services and supports 

for people with intellectual disabilities and their families, and who recognize the 

importance of the inherent value of people with intellectual disabilities.

 

8. Urge Federal mental health research, service and education agencies to readily translate 

and promote research applications toward early prevention, early detection, diagnosis, 

amelioration and treatment of behavioral, emotional, and social disorders that may be 

associated with citizens with intellectual disabilities, e.g., fetal alcohol spectrum 

disorders, fragile X syndrome, autism spectrum disorders when functioning at a level 

equivalent to intellectual disabilities.

9. Urge the Federal Government to take the lead in advancing basic knowledge by 

 strengthening public-to-private technology transfers.

 
34 

10. Urge the establishment and support of an Ad Hoc Federal Interagency Council on 

Research Translation for the Benefit of People with Intellectual Disabilities, with 

membership from appropriate Federal research, service and education agencies and other 

pertinent government agencies and clearinghouses as may be determined. Consider 

inviting and including officials and representatives from appropriate private sector 

research, service and education entities.

 
35 

SECTION III: Heightening Public Awareness of the Value of 

People with Intellectual Disabilities 

We hold these truths to be self-evident, that all men are created 

equal, that they are endowed by their Creator with certain 

unalienable Rights, that among these are Life, Liberty and the 

pursuit of Happiness. 

 The Declaration of Independence 

Background and Rationale 

All people, including people with intellectual disabilities, are endowed by their Creator with the 

same inherent value. As such, it is incumbent upon the Federal Government to respect this 

inherent value and protect the rights and dignity of all people – particularly persons most at risk 

of being victimized, marginalized, or forgotten. Over the last several years in particular, the 

Federal Government has made great efforts to improve the daily lives of people with intellectual 

disabilities through full community inclusion. From the Americans with Disabilities Act and the 

Individuals with Disabilities Education Act to the New Freedom Initiative, barriers continue to 

come down and provide new avenues of opportunity. 

But no amount of legislation that solely addresses government policy will ever be sufficient to 

create a truly inclusive society as long as the hearts and minds of the citizens of this country 

continue to harbor misinformed ideas and attitudes about people with intellectual disabilities. 

These attitudes are perpetuated through stereotypes, poorly informed mass media portrayals and 

depictions, antiquated policies and, perhaps most significantly, the lack of personal experience 

with people with intellectual disabilities. Truly, the most significant barriers to inclusion rest in 

the minds of individuals who do not recognize the inherent value of people with intellectual 

disabilities. 

Challenges and Opportunities

Government must take a more proactive role in demonstrating, not just the inherent value of 

people with intellectual disabilities, but their competence, economic value and potential for 

success. It must promote and encourage opportunities for contribution and lead by example 

through increased utilization of the talents and skills of people with intellectual disabilities. 

Government must change the fundamental process of how and why it develops disability 

programs. By recognizing the potential for people with intellectual disabilities to succeed in 

American society, government programs and services would become an investment in the future 

from which it can expect to see a return. This immediately changes the emphasis from the need 

to provide endless supports to a group perceived as lacking value, to an opportunity to invest in 

the lives of people who have the potential to become a vibrant and vital part of American society, 

and the American economy. 

The Federal Government can make significant progress toward realization of this goal through 

the following relatively simple actions. 
36 

Recommendations

1. Lead by Example

The Committee urges the President to lead by example and set the tone for a shift in 

public perceptions about the inherent value of people with intellectual disabilities by 

considering including in the State of the Union Address,51 Weekly Radio Broadcast, and 

other public appearances, statements of support, stories of inspiration, and statistical data 

on the contributions of people with intellectual disabilities. Sending the message that the 

Federal Government is willing to invest in, and has expectations of people with 

intellectual disabilities will help change the perception of state and local policy makers, 

educators, business professionals and community leaders, and open doors of opportunity 

for people with intellectual disabilities that may not have existed before. This language 

of investment and expectations must be carried throughout government, permeating every 

department, program, project, curriculum and statement about people with intellectual 

disabilities. By reshaping government language, program development and 

implementation will reflect the fact that people with intellectual disabilities have the 

desire and potential to reach their goals and lead productive, valuable lives. 

2. Establish a National Disability Awareness Board

Because of the decentralized nature of disability programs throughout the Federal 

Government – with programs spread across and throughout most Federal agencies – 

individuals with disabilities, families and caregivers find it difficult to identify and fully 

utilize the programs and benefits available to them. Valuable resources continue to go 

underutilized and the needs of many individuals and families in the disability community 

continue to go unmet because they are unaware of where the programs are located and 

how best to utilize them. In order to address this concern, the Committee recommends 

the President mandate that each disability program throughout the Federal Government 

set aside a percentage of its total budget to increase public awareness of the program’s 

existence and purpose. The Committee strongly believes that in order to realize the full 

potential of the New Freedom Initiative, the hearts and minds of the American people 

must be influenced and educated to recognize the inherent value of people with 

disabilities. The Committee therefore recommends that a percentage of the money set 

aside to raise awareness about Federal disability programs should be appropriated and 

pooled to establish a national public awareness campaign about the lives, value and 

competence of people with disabilities. In order to maximize the investment, the 

Committee recommends the establishment of a National Disability Awareness Board. 

The Board will manage and direct the manner in which the funds are used and can 

include, but need not be limited to curriculum and program development, and 

collaboration with other public awareness efforts such as the Ad Council (the leading 

producer of public service advertisements since 1942). 

 

51 In the 2007 State of the Union Address, the President briefly mentioned people with disabilities when he said, “When it comes to health care, 

government has an obligation to the elderly, disabled, and poor children.” http://www.whitehouse.gov/news/releases/2007/01/20070123-2,html, 

accessed on July 11, 2007.
37 

Through the allocation of a relatively small portion of Federal disability program dollars, 

people with intellectual disabilities, their families and caregivers will have a greater 

awareness of the programs and services available to them, and society at large will gain a 

better understanding of the value and competence of the people with intellectual 

disabilities in their communities. 

3. Establish a National Disability History Week

History is a roadmap for the future. It helps chart the course ahead by reminding us of 

how we got to where we are, and in many cases, illustrates just how far we have come. 

By that same rule, ignorance of our history can lead to repeating past mistakes and 

traveling down roads already discovered to be ineffective and even dangerous. It is 

vitally important that future generations are equipped with the historical knowledge 

necessary to make wise and learned decisions about the future direction of disability 

policy in this country. To facilitate the efforts of future leaders in this endeavor, the 

Committee recommends the establishment of a National Disability History Week.

52 

Official celebration of any social movement or group in society serves as an invaluable 

opportunity for increased education and awareness. This has been true for many 

minority, religious and ethnic groups who have struggled to secure for themselves and 

their families the promise of a future with no boundaries and no limitations on their 

potential for success. For example, Black History Month provides an opportunity for 

leaders, schools, individuals and communities to discuss important issues in a way that 

would perhaps not be possible otherwise. It is also a conduit for cultural understanding 

and creates an avenue for community participation, education and increased cultural, 

religious and ethnic awareness.

As illustrated by the success of Black History Month, a week designated to focus on 

disability history will provide an invaluable opportunity for increased awareness and 

education about people with disabilities. It could be used as a vehicle to celebrate the 

accomplishments of people with disabilities and to highlight past successes in the 

establishment of disability rights and policies, such as the President’s New Freedom 

Initiative. A week to focus on disability history can illustrate the importance of 

continuing to strive for full and lifelong inclusion and accessibility for all people with 

disabilities. It can also serve as a vehicle to heighten public awareness of people with 

intellectual disabilities as active contributors to their communities, and to diminish public 

perception of people with disabilities as people only capable of receiving services and 

supports rather than providing them. People with intellectual disabilities serving side by 

side with their peers without disabilities provides opportunities for all people to become 

active contributing members of their community while learning valuable lessons of 

friendship and acceptance. 

 

52 The Committee recommends the third week in October for focusing on disability history. This particular week and month were selected based 

on a couple of key factors. National Disability Employment Month –another important disability related celebration – already occurs during 

October; therefore, schools, universities and community organizations are already holding a wide array of disability related events, many of 

which do not solely focus on employment. Furthermore, efforts within individual states – such as West Virginia which has already established a 

statewide Disability History Week – have chosen the third week in October to hold their celebrations. Designating the third week of National 

Disability Employment Month to coincide with state wide efforts will serve to increase the efficacy of the combined efforts. 
38 

In addition to its impact on civic and community life, public schools would be able to 

integrate National Disability History Week into their academic curriculum, providing 

students with meaningful opportunities to learn about the accomplishments and 

challenges facing individuals with disabilities. It would also provide students with a 

forum in which to receive answers to questions that they may otherwise have felt hesitant 

to ask, particularly in the presence of their classmates with disabilities. It is vitally 

important that the nation’s youth learn that individuals with intellectual disabilities are 

people with dignity who deserve respect, and, who like everyone else, are not people for 

whom to feel sorrow, pity or fear. It is equally important that people with intellectual 

disabilities, particularly youth, hear stories of inspiration that can provide hope, a sense of 

pride, role models of success, and demonstrate that they, like their peers without 

disabilities, have a bright future filled with potential for great achievement. The 

following real life examples demonstrate that people with intellectual disabilities, given 

opportunity and appropriate support, can succeed in achieving personal goals. 

CHRIS delivers inspirational speeches to university students. He is the goodwill 

ambassador for the National Down Syndrome Society and serves as the editor-inchief of its quarterly magazine, Straight Talk. He is also a spokesperson for 

National Down Syndrome Congress. In 1992, Chris wrote an autobiography, the 

New York Times Best-Seller, A Special Kind of Hero. The book is dedicated to 

Chris’ biggest fan and look-alike, Scott Muir. Scott contributed a chapter 

entitled, “Believe in Yourself” in the 1999 book, Down Syndrome: A Promising 

Future, Together, edited by T.J. Hassold & D. Patterson, and published by WileyLiss.53

LIZ is a leader in the self-advocacy movement. She serves on the Executive 

Board of the The Association for the Severely Handicapped (TASH) and was 

formerly active in her local self-advocacy group in New Jersey. She served on the 

Board of New Jersey TASH, and worked with a state-wide group working to close 

institutions. On the national level, Liz was Vice President of the national 

organization, Self-Advocates Becoming Empowered (SABE) from 1993 to 1996. 

She shares her experiences as a person with an intellectual disability and teaches 

others how to stand up for their rights. In August, 1998, Liz received the Elizabeth 

Monroe Boggs Award for Leadership. She was appointed by President Bill 

Clinton to the President’s Committee on Employment of Persons with 

Disabilities.54

Ann, of Moultonboro, New Hampshire, is only one of two self-advocates ever 

appointed to the President’s Committee for People with Intellectual Disabilities. 

She serves on the board of directors of the Direct Support Professionals 

Association of New Hampshire and the Lakes Region Community Service 

Council. She has served as a board member of the National Down Syndrome 

 

53 http://en.wikipedia.org/wiki/Chris_Burke_(actor). Accessed on January 16, 2008. 54 http://members.shaw.ca/individualizedfunding/speaker 4.htm. http://www.ncddc.org/publications/People%20%First%20Youth-5.pdf . Accessed on January 16, 2008.
39 

Congress (NDSC), the New Hampshire Developmental Disabilities Council, and 

the New Hampshire American Association on Mental Retardation. Ann is founder 

of two fundraising initiatives: the Ann “UP” Fund for the benefit of NDSC, and 

the Annie Forts “UP” Syndrome Fund to help children with Down Syndrome all 

over the country. She also serves as editor of the “Down Syndrome Headline 

News”. Ann is a popular, nationally recognized motivational speaker and 

advocate for the needs and rights of people with disabilities, especially those with 

mental disabilities. She has served as keynote speaker at many national, regional 

and local conferences, seminars, colleges and schools.55

The need for increased awareness and education is particularly important. A 2003 study 

found that 80 percent of the population does not personally know a person with an 

intellectual disability.56 This lack of meaningful contact fosters the misconception that 

people with intellectual disabilities cannot significantly contribute to the economy and 

community. Recent studies indicate that attitudes about people with intellectual 

disabilities are relatively the same as they were over 50 years ago.57 However, 

significant advancements have been made in education and training programs for people 

with intellectual disabilities that have raised their potential for achievement and success 

to even greater heights. National Disability History Week can serve as a catalyst to begin 

a dialogue between people with disabilities, government, schools, advocacy group 

representatives and the population at large that will serve to bridge the gap between 

erroneous perception and true potential. 

Understanding history lays the foundation for good citizenship, encourages civic 

responsibility, and inspires behavior that reflects respect for individual differences. 

Establishing a National Disability History Week provides an opportunity to instill in our 

communities, places of worship and schools an understanding that people with 

disabilities, including intellectual disabilities, have inherent and economic value in our 

society and play a vital role in our nation. 

4. Strengthen the Commitment to DisabilityInfo.gov 

As government works to change the misperceptions and negative attitudes about people 

with intellectual disabilities, it is very important that people with intellectual disabilities 

be given every opportunity to succeed and reach their potential. The ADA, IDEA and 

New Freedom Initiative have opened many doors and provide invaluable opportunities 

for education, employment and personal growth, but the fractured and piecemeal nature 

of many of the programs – that can span several departments, program offices and even 

Federal and state lines – make it difficult for people with intellectual disabilities and their 

 

55

http://www.unionleader.com/article.aspx?headline=Annie+Forts%3A+She’s+able+to+overcome+almost+anything

&articleId=24920b37-4f75-4f30-8ddd-cf5df7ff13c. Accessed January 16, 2008.

56 As reported by Dr. Gary Siperstein in his presentation to the Committee on February 14, 2007. Dr. Siperstein’s presentation was based on 

statistics from the Multinational Study of Public Attitudes toward Individuals with Intellectual Disabilities. Gary N. Siperstein, et al, “The 

Multinational Study of Public Attitudes toward Persons with Intellectual Disabilities,” Special Olympics International, Washington, D.C., 2003. 57 Ibid.
40 

families to utilize services and supports that would improve the quality of their daily 

lives. It is not enough to create new programs and pass important legislation. Federal 

Government must also ensure that those who would most benefit from the legislation and 

programs have easy, reliable access to the necessary information. 

 

The 2002 establishment of DisabilityInfo.gov signaled an important step in the effort to 

address this issue. Federal agencies were directed to launch DisabilityInfo.gov – a web 

portal that allows subject matter experts from 22 Federal agencies to post to the website 

news, program and policy updates, and other information about the disability programs 

and services provided by their respective agencies. The web portal breaks down barriers 

by connecting people to the resources and information they need to become part of the 

workforce and community, and live productive, independent lives. With more than seven

million visitors to date, and daily visitors that have doubled since 2004, 

DisabilityInfo.gov has become the leading web portal through which people access 

information on cross-cutting disability-related subjects. 

Because DisabilityInfo.gov represents a significant opportunity for increased access to 

information that can directly impact the quality of life for people with intellectual 

disabilities, it must be sustained and strengthened to maximize its efficacy and improve 

access to vital information. The public, in general, and people with intellectual 

disabilities and their families, in particular, must be made aware of this important 

resource and vital part of the New Freedom Initiative. In order to achieve this important 

goal, the President’s Committee recommends the following:

• Encourage Federal agency partner heads to ensure that a representative at the 

Assistant Secretary or Deputy Assistant Secretary level directly participate in 

biannual DisabilityInfo.gov Governance Board meetings to guide future 

improvements to this interagency web portal; and encourage White House/DPC 

active participation in the Governance Board meetings.

• Direct all Federal agency partners and their relevant sub-agencies to dedicate 

subject matter experts whose responsibility, within their scope of their mission, is 

to ensure the timeliness and integrity of the information presented on 

DisabilityInfo.gov. 

• Encourage all Federal agency partners to fund the growth of DisabilityInfo.gov 

through memoranda of understanding or other appropriate instruments, and/or 

provide for direct funding of DisabilityInfo.gov to DOL/ODEP in FY 2009. 

• Direct all Federal agency partners to DisabilityInfo.gov to dedicate subject matter 

experts to contribute new content to the web portal regularly, and as needed,

regarding time-sensitive grant announcements and news releases related to their 

disability programs, services and announcements. 
41 

• Designate a senior level public affairs representative from each Federal agency 

partner to help coordinate and expand public awareness of DisabilityInfo.gov, and 

increase awareness among service providers, advocates and employers of this 

important resource for people with intellectual disabilities and their families.
42 

SECTION IV: Crime Victims with Intellectual Disabilities 

Background and Rationale

People with intellectual disabilities are born with the same inherent value as any other person 

born in this country and with the same rights recognized and protected by the Constitution of the 

United States. They share the same right to equal protection under the law guaranteed by the 

14th amendment, and they share the same authority to exercise that right when a crime is 

perpetrated against them. 

Society has been slow to recognize and afford equal protection to persons with intellectual 

disabilities. In a small but profound experiment in 1992, Dick Sobsey, of the University of 

Alberta, gave two groups of law students an identical crime scenario with the exception of one 

detail. In one scenario the crime victim had an intellectual disability, and in the other, the crime 

victim had no disability. He then asked each group to determine the sentence the perpetrator 

should receive. The group sentencing the perpetrator who committed a crime against the person 

with an intellectual disability gave significantly less jail time than the group sentencing the 

perpetrator against the person without a disability.58 Given that recent statistical analysis 

indicates that the perceived value of individuals with intellectual disabilities has not changed 

significantly over the past 50 years,59 it is likely that if that same experiment were conducted 

today, the results would not be much different. 

Challenges and Opportunities 

Our culture puts great value on surface beauty, power, intelligence and wealth. These are not 

characteristics usually associated with individuals with intellectual disabilities. And though 

these assumptions are false, people with intellectual disabilities are often seen as incompetent, 

helpless, mentally unstable, slow, lacking awareness, unreliable, and dependent. In the case of 

violence and victimization, people with intellectual disabilities are often believed to be unable to 

feel pain, either physical or psychological. It is no surprise then that all available evidence points 

to the fact that people with intellectual disabilities are abused at rates many times greater than 

people without disabilities throughout the lifespan.60 

One of the reasons for the general public’s misperceptions about people with intellectual 

disabilities is their continued lack of personal contact with them. As noted previously in this 

report, 80 percent of all U.S. citizens do not personally know an individual with intellectual 

disability.

61

generations, increased opportunities for interaction are a vital component of increased 

understanding. Until people with intellectual disabilities are seen as valued members of our 

 While inclusion efforts have made an impact, particularly among younger 

 

58 Dick Sobsey, Violence and Abuse in the Lives of People with Disabilities: The End of Silent Acceptance?, Baltimore, MD, Paul H. Brooks 

Publishing Company, 1994, p. 323.

59 Siperstein, 2007. 60 Joan R. Petersillia, “Crime Victims With Developmental Disabilities: A Review Essay,” Criminal Justice and Behavior, Vol. 28, No. 6, 2001, 

pp. 655-694. 61 Siperstein, 2007.
43 

communities, our efforts to educate, train, legislate, and advocate will not be enough to 

ameliorate the crime and violence committed against them. With all of the effort at the Federal, 

state and community level devoted to full, lifelong, community inclusion for people with 

intellectual disabilities, it is imperative that their rights and needs are recognized and protected.

The societal response of distancing, devaluing and dehumanizing people with intellectual 

disabilities leads to first responders, social workers, prosecutors, and other professionals that deal 

with violence to assume that these victims cannot be credible witnesses for themselves and 

others, or that perpetrators are not worth prosecuting. This kind of societal response can also 

lead to juries and judicial fact finders determining that the victim with an intellectual disability is 

unreliable as a witness and has limited value. This lack of awareness can result in denial of 

equal justice for people with intellectual disabilities. 

People with intellectual disabilities, just like the population at large, represent a diverse and 

multifaceted group. Their abilities vary as do their likes and dislikes. They are no more or less 

alike than everyone else. A first responder to a crime victim with a disability may encounter 

someone whose disability is not easily recognizable. This person’s behavior may be 

misinterpreted and labeled as uncooperative. Another victim may have extensive disabilities, 

leading a first responder to believe that this individual is incapable of accurate reporting, or 

acting as a witness on his/her own behalf. These are situations where training and increased 

awareness can make a significant difference in outcome.

Even with education and training, if a first responder does not believe that people with 

intellectual disabilities have inherent value as individuals, with equal rights to dignity, respect 

and justice, the outcome may not be optimal. Honoring, promoting and teaching the equal rights 

of all people in the criminal justice system – including people with intellectual disabilities – must 

be a vital component of any training and public awareness effort. 

Recommendations

1. Encourage increased training for persons working in the criminal justice system on the 

 value of people with intellectual disabilities within the criminal justice system. 

Law enforcement agencies and all entities that investigate and prosecute criminal activity

should be trained in interfacing with people with intellectual disabilities, including 

protecting their civil rights. Some resources for training exist through agencies like the 

Department of Justice’s Office for Victims of Crime (DOJ/OVC); however, they reach a 

very limited number of people. Many Federal agencies are champions of these efforts 

while others need to investigate how they can be more responsive to this need. 

Furthermore, such training is often grant-funded and thus sporadic in its availability. 

Training is typically the single most important activity that can be taken to improve 

system response and ensure equal access to the justice system for individuals with 

disabilities, thus a coordinated effort to encourage training should be planned and 

implemented. Both Title II of the Americans with Disabilities Act and Section 504 of the 

Rehabilitation Act can, at least in part, serve to meet this need and increase access to the 

criminal justice system for people with intellectual disabilities.
44 

 

Section 504 of the Rehabilitation Act62 states, 

“(N)o otherwise qualified individual with a disability in the United 

States... shall, solely by reason of her or his disability, be excluded 

from the participation in, be denied the benefits of, or be subjected 

to discrimination under any program or activity receiving Federal

financial assistance or under any program or activity conducted by 

any Federal Agency...” Similarly, Title II of the Americans with 

Disabilities Act63 states that “no qualified individual with a 

disability shall, by reason of such disability, be excluded from 

participation in or be denied the benefits of services, programs, or 

activities of a public entity, or be subjected to discrimination by 

any such entity.” 

According to a Department of Justice document entitled First Response to Victims of 

Crime Who Have a Disability,

64

 

 “(B) both Title II of the ADA and Section 504 require – 

with few exceptions – that first responders provide victims of crime who have a disability 

with an equal opportunity to benefit from and participate in all programs, services and 

activities of the law enforcement agency. In addition, first responders must provide for 

equally effective communication to victims with a disability. Law enforcement, 

therefore, is required to make reasonable modifications to policies, practices, and 

procedures where needed to accommodate crime victims who have a disability, unless 

doing so would fundamentally alter the service, program, or activity the agency 

provides.” In order to receive Federal funding, states, law enforcement agencies and any 

other federally funded entity must comply with the requirements of Section 504 outlined 

above. Training is the most effective and efficient way to meet this requirement. 

Currently there is no coordinated effort to ensure that agencies and organizations are 

aware of the full range of their obligations under Section 504, that they have access to the 

necessary materials to provide adequate training, or that they understand the 

consequences of non-compliance. In order to ensure full compliance with Section 504, 

DOJ should take the following actions: 

• Develop a grantee information packet, for inclusion in all contracts for Federal 

funds, to outline the grantee’s obligations under Section 504 and explain the 

consequences of non-compliance, and provide information on available 

training through DOJ. 

• Improve current, and develop new training materials for use in the law 

enforcement community that are inclusive of people with intellectual 

disabilities as witnesses and advocates for themselves and others.

 

62 29 U.S.C. §794d. See www.section508,gov for section text and additional information, accessed on July 12, 2007. 63 42 U.S.C. §12132. 64 “First Response to Victims of Crime Who Have a Disability,” U.S. Department of Justice, October, 2002. Document number NCJ 195500, 

http//www.ojp.usdoj.gov/ovc/publications/infores/firstrep/2002/NCJ195500.pdf, accessed on July 12, 2007.
45 

• Work to better advertise the availability of these resources to non-grantee 

departments and agencies to ensure that all law enforcement and first 

responder agencies and organizations have the most current and accurate 

resources available to protect the rights of people with intellectuals in the 

criminal justice system.

2. Increase efforts of the Federal Government to collect data on crime victimization of 

 people with intellectual disabilities. 

The disability field has long recognized the need for accurate, reliable data. It is difficult 

to get the attention of policymakers when little to no data are collected and the data that is 

collected is not widely circulated and analyzed. The 1998 Crime Victims with 

Disabilities Awareness Act recognized this need and mandated that the Justice 

Department begin collecting data on victims of crimes with disabilities. Since that time, 

the Bureau of Justice Statistics (BJS) has worked to fulfill the mandate of the Crime 

Victims with Disabilities Awareness Act. However, with limited resources the quality of 

the data produced thus far has been mixed. BJS has implemented a new questionnaire in 

2007 that it expects will produce viable estimates of crimes against people with 

disabilities, but the data will have some limitations. It will not enable disability specific 

victimization estimates beyond a few major categories, nor will it collect data on the 

abuse of people with disabilities living in institutions. Identifying the extent to which 

people with intellectual disabilities are the victims of crime, particularly in the 

institutional setting, is vitally important to ensuring the safety of those who may be least 

able to protect themselves from victimization. Therefore, the Committee recommends 

that the necessary resources be dedicated to producing accurate, disability specific data 

on crimes perpetrated against people with intellectual disabilities. 

3. Provide Training on Mandated Reporting Laws and Ensure Their Proper Enforcement. 

It is imperative that all mandated reporters providing service to individuals with 

disabilities have an adequate understanding of violence, the dynamics of violence, and 

their responsibility for reporting it. Government must also ensure that the laws on 

mandated reporting are strictly enforced. In jurisdictions where mandated reporting laws 

do not exist, government needs to push for their enactment. One possible remedy is to 

begin prosecuting providers of services and supports for failing to report cases of 

violence by people under their employ. This is a violation of law in many jurisdictions 

that is rarely, if ever, prosecuted. The current prevailing practice for providers is to fire or 

“let go” of employees they know or suspect have abused their clients, without filing a 

report documenting the violence. This allows the perpetrator to secure another similar 

position, putting a new group of people at risk. 

4. Encourage advocacy organizations and constituency groups to get involved in efforts to 

reduce crime against people with intellectual disabilities. 
46 

The same advocacy and placement agencies that take the lead in the push for full 

community inclusion could also become more involved in efforts to reduce violence. 

These national and state organizations are in a unique position to help ensure that 

communities minimize the risk of violence against vulnerable citizens while maintaining 

their opportunities to participate in community activities. Historically, risk reduction 

efforts have been effective in reducing violence as well as improving disclosure factors 

(speed of discovery). 

 

5. Encourage the courts to consider the special needs of people with intellectual disabilities 

when testifying under oath. People with intellectual disabilities can be reliable and 

accurate witnesses for themselves and others, but can also be put at considerable risk and 

their testimony compromised in the hands of a prosecutor or defense attorney attempting 

to take advantage of them. 
47 

Conclusion 

At various times in America’s history, its leaders have issued the clarion call to its citizens to 

embrace the true meaning of our national creed that all people are created equal, and that they are 

endowed with certain inalienable rights. In the 2007 Report to the President – Holding Truths 

To Be Self-Evident: Affirming the Value of People With Intellectual Disabilities – the 

President’s Committee for People with Intellectual Disabilities affirms its commitment to 

ensuring that all people, regardless of ability, have access to the rights, privileges and protections 

enumerated in the Declaration and afforded by the U.S. Constitution. In order to realize this 

goal, we must, as a nation, recognize that people with intellectual disabilities have value as 

individuals, as contributors to society and as Americans. We must insist that the inherent rights 

of people with intellectual disabilities are honored and protected. The Committee urges the 

President to lead by example and direct all Federal officials to renew with even greater zeal the 

Federal effort to improve the quality of life, and secure the blessings of liberty for people with 

intellectual disabilities by implementing the recommendations in this report. 

In the area of the New Freedom Initiative, established to remove barriers to community 

inclusion and improve the quality of life that is experienced by people with intellectual 

disabilities, significant progress can be realized by early implementation of the following 

actions:

• increasing access to emerging assistive and universally designed technologies. 

• improving and expanding educational opportunities in the least restrictive environment. 

 

• promoting and increasing full access to community-based housing opportunities, 

including home ownership, and opportunities to engage in volunteering or community 

service.

• ensuring that all eligible children have access to Early and Periodic Screening, 

 Diagnostic, and Treatment services. 

In the area of Research Application, the daily lives of people with intellectual disabilities will 

be significantly improved by: 

• intensifying efforts to streamline the translation of basic scientific findings into clinical 

applications. 

• vigorously pursuing and developing new technologies and approaches for early 

 screening, detection, diagnosis, amelioration and treatment. 

• establishing an Ad Hoc Federal Interagency Council on Research Translation for the 

 Benefit of People with Intellectual Disabilities, with membership from appropriate 

 Federal agencies, advised by pertinent non-governmental organizations. 
48 

In the area of Public Awareness, long-held myths can be dispelled and the value and 

competence of people with intellectual disabilities recognized through: 

• leading by example by including in the President’s State of the Union Address, Weekly 

Radio broadcasts, and other public appearances, statements of support, stories of 

inspiration and statistical data on the contributions of people with intellectual disabilities. 

• mandating that every disability program through the Federal Government set aside a 

percentage of its total budget to increase public awareness of the program’s existence and 

purpose. 

• Establish a National Disability History Week to instill in America’s communities an 

understanding and appreciation of the value of people with intellectual disabilities. 

• increasing the commitment to DisabilityInfo.gov so that it may better fulfill its mission to 

provide increased access to vital information and resources. 

• encouraging and providing the necessary training to people working in the criminal 

justice system to facilitate recognition of the competency and value of people with 

intellectual disabilities to the criminal justice system, both as victims and witnesses. 
i 

Acknowledgments 

The President’s Committee for People with Intellectual Disabilities extends appreciation to the 

following individuals for their contribution to the preparation of this Report to the President, 

affirming the value of people with intellectual disabilities:

Enid M. Ablowitz, Associate Director, Coleman Institute for Cognitive Disabilities, 

University of Colorado 

Nora J. Baladerian, Ph.D., Disability, Abuse and Personal Rights Project Director, 

CAN DO Project Director for Arc Riverside (Child/Adult Abuse and Neglect Disability 

Outreach)

David Braddock, Ph.D., Executive Director, Coleman Institute for Cognitive 

Disabilities, Coleman-Turner Chair in Cognitive Disabilities and Professor of Psychiatry 

with the Coleman Institute for Cognitive Disabilities and the Department of Psychiatry at 

the University of Colorado 

Olegario D. Cantos, VII, Esquire, Special Assistant to the Assistant Attorney General, 

U.S. Department of Justice. Former Associate Director for Domestic Policy, The White 

House 

Claudia Coleman, Founder, Coleman Institute for Cognitive Disabilities, University of 

Colorado. Former member, President’s Committee for People with Intellectual 

Disabilities

Daniel Davies, Founder and President, AbleLink Technologies, Inc. 

Michael Gamel-McCormick, Professor and Interim Chair, Department of Individual 

and Family Studies. Director, Center for Disabilities Studies, University of Delaware

Robert G. Goldstraw, Project Manager, DisabilityInfo.gov, U.S. Department of Labor 

Office of Disability Employment Policy

George Jesien, Ph.D., Executive Director, Association of University Centers on 

Disabilities

Jay Klein, Director, Center for Housing and New Community Economics (CHANCE) 
ii

Clayton Lewis, Ph.D., Professor of Computer Science, Scientist in Residence, 

University of Colorado, Coleman Institute for Cognitive Disabilities

Bettijoyce Lide, National Institute of Standards and Technology 

Kathleen McGinley, Ed.D., Deputy Executive Director for Public Policy, National 

Disability Rights Network

Jean D. Moody-Williams, Director, Division of Quality Evaluation and Health 

Outcomes, Centers for Medicare and Medicaid Services

Patricia Morrissey, Ph.D., Commissioner, Administration on Developmental 

Disabilities, Administration for Children and Families, U.S. Department of Health and 

Human Services 

Michael R. Rand, Chief, Victimization Statistics, Bureau of Justice Statistics, U.S. 

Department of Justice

Judy Shanley, Ph.D., Education Program Specialist, Office of Special Education 

Programs, Office of Special Education and Rehabilitative Services, U.S. Department of 

Education 

Jean K. Sheil, Director, Family and Children’s Health Program Group, Centers for 

Medicare and Medicaid Services

Gary Siperstein, Ph.D., Professor, Psychology and Human Services, University of 

Massachusetts, Director, Center for Social Development and Education, University of 

Massachusetts, Boston

Mary P. Sowers, Technical Director of the Home and Community Based Service 

Waivers, Centers for Medicare and Medicaid Services

Steven Stock, MA, Vice President, AbleLink Technologies, Inc.

James N. Stream, Executive Director, Arc Riverside 
iii

Steve Tingus, M.S., C. Phil., Deputy Assistant Secretary for Planning and Evaluation, 

Office of the Secretary, Office of the Assistant Secretary for Planning and Evaluation, 

Office of Disability, Aging, and Long-Term Care Policy, U.S. Department of Health and 

Human Services. Former Director, National Institute on Disability and Rehabilitation 

Research. Former Chair, Interagency Committee on Disability Research

Kim Van Naarden Braun, Ph.D., Epidemiologist, Developmental Disabilities Branch, 

National Center on Birth Defects and Developmental Disabilities, Centers for Disease 

Control and Prevention 

Gregg C. Vanderheiden, Ph.D., Director, Trace Research and Development Center, 

University of Wisconsin-Madison 

Steven F. Warren, Ph.D., Chair, Developmental Disabilities Research Centers. Director, 

Institute for Life Span Studies, University of Kansas 

Renee Wolenhaus

Deputy Chief, Disability Rights Section, Civil Rights Division, U.S. Department of 

Justice

Members of the President’s Committee for People with Intellectual Disabilities whose 

leadership and preparation of briefing papers contributed significantly to the development 

of this Report: 

Stephanie Preshong Brown 

Sharman Word Dennis 

William Edwards 

 Carmela Vargas Gonzales 

Mark Gross

Harris Hollin

Stephen Hollingshead, Ph.D.

 Steven C. Rhatigan 

Neil Romano

MaryMargaret Sharp-Pucci, Ph.D. 

Linda Hampton Starnes 

 
iv

PCPID Citizen Members

Dallas “Rob” Sweezy, Chairperson

Centreville, Virginia 

Aiken, Clay Hollin, Harris N. 

Raleigh, North Carolina Palm Beach, Florida

Barraza, Ricardo Jr. Kelly, Brian*

El Paso, Texas Montecito, California

Bartlett, Herbert* O’Halloran, Casey Patrick

Bellevue, Washington North Fort Myers, Florida

Billmire, Valerie Reilly, Thomas J.

Park City, Utah Wyomissing, Pennsylvania

Bird, Stephen* Rhatigan, Steven C.

Blacksburg, Virginia The Woodlands, Texas 

Boles, James Romano, Neil

Amherst, New York Clarksville, Maryland

Brown, Stephanie Preshong Sharp-Pucci, MaryMargaret

Palm City, Florida Batavia, Illinois

Dennis, Sharman Word Starnes, Linda Hampton

Silver Spring, Maryland Longwood, Florida

Edwards, William Suroviec, Stephen

Pasadena, California Lewisberry, Pennsylvania

Gonzales, Carmela Vargas Tienken, William

Taos, New Mexico Clarendon Hills, Illinois 

* No longer serving on the Committee at the time of publication
v

PCPID Ex officio Members and Representatives

The Attorney General

The Honorable Michael Mukasey

U.S. Department of Justice

Washington, DC

Represented by:

Mark Gross

Deputy Chief, Appellate Section

Civil Rights Division

The Secretary of the Interior

The Honorable Dirk Kempthorne

U.S. Department of the Interior

Washington, DC

Represented by:

Jerold L. Gidner

Deputy Bureau Director

Indian Services

The Secretary of Commerce

The Honorable Carlos M. Gutierrez

U.S. Department of Commerce

Washington, DC

Represented by:

Pat Leahy

Director for Legislative and Intergovernmental 

Affairs

The Secretary of Labor

The Honorable Elaine L. Chao

U.S. Department of Labor

Washington, DC

Represented by:

Christopher Button

Supervisory Policy Advisor

Adult Policy Team

Office of Disability Employment Policy

The Secretary of Health and Human Services

The Honorable Michael O. Leavitt

U.S. Department of Health and Human Services

Washington, DC

Represented by:

The Honorable Margaret Giannini, M.D., 

F.A.A.P.

Director

Office on Disability

The Secretary for Housing and Urban 

Development

The Honorable Alphonso Jackson

U.S. Department of Housing and Urban 

Development

Washington, DC

Represented by:

Stephen B. Hollingshead, Ph.D.

Senior Advisor to the Secretary

Alternate Contact:

Sasha Evans

Special Assistant to the Secretary

The Secretary of Transportation

The Honorable Mary E. Peters

U.S. Department of Transportation

Washington, DC

Represented by:

Caffin Gordon

Associate Director for Policy and Quality 

Control

Departmental Office of Civil Rights
vi

The Secretary of Education

The Honorable Margaret Spelling

U.S. Department of Education

Washington, DC

Represented by:

The Honorable Raymond Simon

Deputy Secretary of Education

Alternate Contact:

Donna Wiesner

Special Assistant to the Assistant Secretary 

The Secretary of Homeland Security

The Honorable Michael Chertoff

U.S. Department of Homeland Security

Washington, DC

Represented by:

Margaret Schaefer

Disability Policy Advisor

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, DC

Represented by:

Jewel Bazilio-Bellegarde

The Commissioner of the Social Security

Administration 

The Honorable Michael J. Astrue

Social Security Administration

Baltimore, Maryland

Represented by:

Richard E. Balkus

Deputy Associate Commissioner 

Disability and Income Assistance Policy

The Chair of the Equal Employment 

Opportunity Commission

The Honorable Cari M. Dominquez

Equal Employment Opportunity Commission

Washington, DC

Represented by:

Mary Kay Mauren

Senior Attorney/Advisor

The Chair of the National Council on 

Disability

The Honorable John R. Vaughn

National Council on Disability

Washington, DC

Represented by:

Milton Aponte

Council Member

National Council on Disability

Senior Training and Disability 

Inclusion Officer
vii

PCPID Staff 

Sally Atwater

Executive Director

Telephone: 202-260-1500

E-mail:Satwater@acf.hhs.gov

Laverdia Taylor Roach

Program Analyst

Telephone: 202-205-5970

E-mail:Lroach@acf.hhs.gov

George N. Bouthilet, Ph.D.*

Program Specialist

Telephone: 202-205-5408

E-mail:Gbouthilet@acf.hhs.gov

Kodie Ruzicka

Program Specialist

Telephone: 202-205-7989

E-mail:Kruzicka@acf.hhs.gov

Sheila Whittaker

Program Assistant

Telephone: 202-260-0452

E-mail:Swhittaker@acf.hhs.gov

Madjid Karimi

Executive Assistant

Telephone: 202-619-3165

E-mail: Madjid.Karimieasl@acf.hhs.gov

*Deceased (10-24-07)
President’s Committee for People with

Intellectual Disabilities

The Aerospace Center, Second Floor Suite 2-B

370 L ‘Enfant Promenade, SW

Washington, DC 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