President’s Committee for People with

Intellectual Disabilities

KEEPING THE CHARGE

Accessibility to Dental Care 

for

People with Intellectual Disabilities

2005

President’s Committee for People with Intellectual Disabilities
ii

President’s Committee for People with Intellectual Disabilities

DISCLAIMER

This document, Report to the President: KEEPING THE CHARGE...Accessibility to 

Dental Care for People with Intellectual Disabilities, 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, public policy, dentistry 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.
3

President’s Committee for People with Intellectual Disabilities

The President

The White House

Washington, D.C. 20500

Dear Mr. President:

As Chair of the President’s Committee for People with Intellectual Disabilities (Committee), I am 

pleased to forward to you a copy of the Committee’s annual Report in keeping with your Executive 

Order 12994, as amended. As requested in the Executive Order, the Report is being delivered to you 

through the Secretary of Health and Human Services.

The President’s Committee for People with Intellectual Disabilities has recently discovered some 

important findings concerning an overwhelming percentage of American citizens with intellectual 

disabilities. Most citizens with intellectual disabilities possess varying degrees of poor dental health, 

which frequently transmit to a detrimental effect on their overall general health.

The cost for a preventive approach to dental health care is relatively low, but the costs for neglecting 

preventive dental health care measures are enormous to this vulnerable population. The Committee 

desires to help alleviate the economic impact of this situation on our nation, and at the same time, 

improve the health status of our American citizens with intellectual disabilities.

As a result of its findings, the Committee is submitting to you this Report citing the deplorable status 

of dental care of American citizens with intellectual disabilities. The members of the Committee, all 

appointed by you, are deeply concerned about the issue as described in the Report and have

suggested recommendations for your consideration and possible action.

In addition to the requirements described in Executive Order 12994, as amended, the Committee 

seeks to abide by the purposes and intentions of your New Freedom Initiative for people with 

disabilities as issued by you in February 2001.

I am particularly pleased to serve as Chair of this Committee and support the goals cited in your New

Freedom Initiative for people with disabilities and all other related activities of your Administration.

Mr. President, thank you for accepting and considering the contents of the enclosed Report. I trust 

that you will find the Report to be a worthy contribution to your Administration. It focuses on a 

critical area of concern for our nation which touches most individuals with intellectual disabilities 

and their families.

Sincerely,

Madeleine Will

Chair

President’s Committee for People with Intellectual Disabilities
4

President’s Committee for People with Intellectual Disabilities

Table of Contents 

Disclaimer ii

Letter from Madeleine C. Will

Chairperson, President’s Committee

for People with Intellectual Disabilities iii

Introduction 1

Accessibility to Dental Care

for People with Intellectual Disabilities 2

References 12

Adult Dental Benefits in Medicaid 13

Illustration Depicting Dental and Oral Health Conditions Often

Seen in People with Intellectual Disabilities 15

PCPID Citizen Members 16

PCPID Ex Officio Members 17

PCPID Staff 21

Acknowledgments 22
Introduction 

It is estimated that approximately six million Americans of all ages, or up to three percent of the 

general population of the United States of America, experience intellectual disabilities (mental 

retardation). Nearly 30 million families, or one in ten, are directly affected by a person with 

intellectual disabilities at some point in their lifetime. Intellectual disabilities present a major 

challenge to the social, educational, health and economic systems within the United States.

The President’s Committee for People with Intellectual Disabilities was first established in 1966 

by Executive Order to focus on this critical subject of national concern. Since 1966, the 

Committee has fostered State planning, stimulated development of strategies, policies and 

programs and advanced the concept of community participation in the field of intellectual 

disabilities. The Committee’s primary function is to provide advice and assistance to the 

President of the United States and the Secretary of Health and Human Services on a broad range 

of matters relating to programs, services, supports and policies that impact the lives of people 

with intellectual disabilities and their families.

In February 2001, President George W. Bush expressed his commitment to tearing down the 

barriers to equality that challenge millions of Americans with disabilities. The President 

announced his New Freedom Initiative, established to help Americans with disabilities by 

increasing access to assistive technologies, expanding educational opportunities, increasing the 

ability of people with disabilities to integrate into the workforce and promoting increased access 

into daily community life. At its first meeting, the President’s Committee determined that it 

would organize its advice to the greatest extent possible within the conceptual framework of the 

challenges and goals outlined in the President’s New Freedom Initiative for people with 

disabilities.

Providing core ideas to change the reality that millions of people with intellectual disabilities 

remain outside of the mainstream of American life motivated the Committee to examine the 

current state of dental care for persons with intellectual disabilities.

1

President’s Committee for People with Intellectual Disabilities
2

President’s Committee for People with Intellectual Disabilities

Accessibility to Dental Care for People with Intellectual Disabilities 

The Issue of Dental Care for People with Intellectual Disabilities

The President's Committee for People with Intellectual Disabilities has recently investigated 

the current state of dental care for the full range of American citizens with intellectual 

disabilities. The Committee has discovered a number of important facts and findings through 

its investigation of the status of dental healthcare for people with intellectual disabilities. 

Broadly, it has found that the status of dental healthcare is appalling for these citizens of our 

nation. Consequently, the President's Committee is calling upon the Administration to 

carefully consider the recommendations incorporated in this Report to remedy a very grave 

challenge for our country.

The President's Committee for People with Intellectual Disabilities believes that by 

considering the recommendations in this Report to the President, the Administration would 

be able to address the underlying issues associated with poor dental healthcare for these 

Americans. The Report addresses issues relating to proper recognition and designation of 

this population as an underserved population in dental healthcare; acknowledges and 

encourages action for improved professional education and training in dental healthcare for 

this population; presents data supporting the need for increasing and correcting the level of 

public awareness for this population; and highlights several other related areas. The 

recommendations in this Report are carefully aimed at remedying and improving the overall 

quality of dental healthcare for American citizens with intellectual disabilities in the most 

effective and efficient manner.

Among advocates, self-advocates and healthcare experts, it is agreed that the lack of adequate 

dental care for people with intellectual disabilities is an epidemic that detracts from the 

quality of life of these individuals and places them at increased risk for associated medical 

problems that frequently result in higher costly visits to the emergency room with additional 

treatments.

In a recent survey screening of Special Olympics athletes whose average age was 24, it was 

found that nearly one in eight people with intellectual disabilities had a pain-causing lesion in 

their mouth, one in six had untreated decay and one in four were already missing teeth.

1

While it is estimated that over half of people with intellectual disabilities have periodontal 

disease, some sub-populations with specific neurodevelopmental diagnoses, such as Down 

Syndrome, have periodontal disease rates as high as 96percent 2 Periodontal disease, a 

chronic infection caused by oral bacteria, has been linked with an increased risk of stroke, 

myocardial infarction and the likelihood of having a premature, low birth-weight infant. 3

There have been numerous Reports detailing the significant healthcare disparities 

experienced by people with intellectual disabilities, both in terms of healthcare access and 

healthcare quality. Perhaps the most significant study was published in the Surgeon 

General's Report of 2000. 4 This Report stated that lack of provider education and poor
3

President’s Committee for People with Intellectual Disabilities

provider reimbursement were two important factors contributing to the general lack of access 

to quality healthcare for people with intellectual disabilities.

The findings of the Committee's investigation on dental healthcare and the resulting 

recommendations are reported below. It should be noted and made clear that the 

statements in the findings of the President's Committee may address a broader area of 

concern than the recommendations. However, since some of these findings address 

matters pertaining to legislation, the legislative aspects are not included within the 

recommendations.

The Committee's recommendations are designed for the special attention and 

consideration of the President and the Secretary of Health and Human Services (HHS) so 

that they may be implemented without the need for any major legislative change or 

approval. At this time, the President's Committee believes that some of the most 

important actions pertaining to the dental healthcare status of American citizens with 

intellectual disabilities may be addressed directly by the Administration.

The Committee is well aware of the many conversations and deliberations taking place at 

the Federal and State levels of government to make improvements to the Medicaid 

program. This program is among the most important in all of government to persons with 

intellectual disabilities because of its far reaching impacts on health care, housing, 

employment and other services and support areas. The Committee would like to 

respectfully offer a strong caution that policymakers involved in developing Medicaid not 

build their reforms on short-term actions that undermine the long-term interests of this 

underserved and vulnerable population and the overriding importance of providing 

preventive care and supports.

Findings of the Committee - Professional Education and Training

The American Academy of Developmental Medicine and Dentistry (AADMD), through a 

grant from Special Olympics and the Center for Disease Control and Prevention (CDC), 

recently performed a comprehensive national survey of medical and dental education in 

the United States regarding people with intellectual disabilities. In this study, it was 

found that the majority of dental schools did not consider intellectual disabilities to be a 

priority subject, despite the fact that up to six million people in the nation may have 

intellectual disabilities. It was also found that the majority of dental students will 

graduate from dental school having never observed or treated a patient with intellectual 

disabilities.5 Furthermore, it was found that the majority of dental residency programs 

also do not address intellectual disabilities. Finally, the availability of continuing 

education focused on intellectual disabilities for practicing dentists is very limited.6

The effect of a lack of provider education has significant consequences for persons with 

intellectual disabilities. In one study that involved persons with intellectual disabilities who 

had access to dental care, findings revealed that over 80 percent of the dentists were not 

performing baseline radiographs, nearly 75 percent were not performing periodontal charting 

and the majority of people with intellectual disabilities were not receiving two-thirds of the
4

President’s Committee for People with Intellectual Disabilities

standard of dental healthcare.

7 In other studies of persons with intellectual disabilities in 

settings where the cost of care and inadequate access to care were prevalent factors, the data 

showed the following: Roughly 25 percent of people with intellectual disabilities had been 

referred to the operating room to receive their dental care under general anesthesia and 55 

percent had been referred for intravenous sedation.

8

This data should be compared to anecdotal results from highly experienced developmental 

dentists who Report having referral rates to the operating room of approximately 3 percent 

and about 5percent referral for intravenous sedation. It should be noted that the use of 

general anesthesia and intravenous sedation significantly increases the cost of care and also 

increases the medical risks associated with treatment. In an unpublished study, it has been 

estimated that providing the proper standard of dental healthcare to people with intellectual 

disabilities could save over $1,300 per person per year in avoided medical, dental and 

sedation costs.

3

Findings of the Committee - Public Awareness

Public awareness of the poor dental health status of people with intellectual disabilities is 

very limited. Studies published by the Special Olympics show that the majority of people 

believe that individuals with intellectual disabilities receive the same or better dental 

healthcare as other people living in the United States. However, this is far from the truth. 

Another common misconception among members of the general public, dental healthcare 

professionals and government agencies is that dental care is a separate concern from medical 

care. Yet, periodontal disease, which is rampant in the intellectual disabilities population, is 

associated with significant increases in many associated medical conditions, since it is known 

that the mouth reflects the health of the rest of the body. The mouth reflects the general 

health and well-being of individuals and without good oral health, people cannot be truly 

healthy.

For individuals, this means that good overall health cannot be achieved without good oral 

health. There is evidence that chronic oral infections such as periodontal diseases, which are 

extremely common among people with intellectual disabilities, are associated with systemic 

diseases such as diabetes, heart disease and stroke. For dental healthcare professionals, this 

means that physicians should also be concerned about the state of oral health of an 

individual. For government entities, this means that the failure to cover dental healthcare 

services for the intellectual disabilities population may require more money to be spent on 

associated medical conditions that have arisen from chronic oral neglect.

Findings of the Committee - The Economics of Dental Healthcare

Approximately 70 percent of people with intellectual disabilities participate in the Medicaid 

service system. The Early and Periodic Screening, Diagnostic and Treatment (EPSDT) 

service of Medicaid, which requires dental services for eligible children, is essential for the 

continuity of dental care provided to the majority of children with intellectual disabilities. 

Unfortunately, the Committee found that dental healthcare is an optional program for adults 

over age 21. As a result, a large majority of State Medicaid programs do not cover the full
5

President’s Committee for People with Intellectual Disabilities

range of dental services for adults with intellectual disabilities and some have no dental 

coverage for adults at all.

In essence, this means that the years of investment in the dental health of children 

and adolescents with intellectual disabilities, who were covered by Medicaid, are lost once 

they reach adulthood. Furthermore, this means that adults with intellectual disabilities are 

subject to the medical ramifications of advanced dental neglect that frequently lead to 

expensive, avoidable and sometimes inappropriate medical interventions such as emergency 

room visits, psychiatric referrals, neurological referrals and numerous and various drug 

prescriptions.

Even in the States that do elect to cover adult dental healthcare under Medicaid, many 

dentists decide not to accept Medicaid patients because Medicaid reimbursements are, in fact, 

so low that in most cases they do not even cover the cost of providing treatment. A study 

conducted by the Government Accounting Office indicated that Medicaid dental 

reimbursement rates in most States are equal to or less than the dental fees normally

charged by only 10 percent of dentists (the 10th

percentile of respective fees).

9 These rates 

are not high enough to cover the business overhead expenses of most private practice 

dentists (equipment, staff salaries and supplies) which, on average, account for 60 percent 

of their gross revenue.

10

There are many reasons why dentists are reluctant to treat people with intellectual 

disabilities. Of the dentists who do participate in Medicaid, many avoid treating patients 

with intellectual disabilities because these patients may take up to twice as long to treat, 

due to factors such as behavior control or chronic oral neglect. From a private practice 

perspective, the extra time involved in treating patients with intellectual disabilities, 

combined with the low rate of Medicaid reimbursement, means that the revenue 

generated per hour is prohibitive to potentially willing dentists caring for people with 

intellectual disabilities.

Regardless of this situation, there are dedicated dental professionals willing to care for 

people with intellectual disabilities and willing to participate in the Medicaid program. In 

order to ensure access to these providers, Medicaid dental coverage for people with 

intellectual disabilities should not only be maintained, it should be expanded to cover 

dental care of individuals across the life span.

Recommendations of the Committee

The recommendations of the Committee cited below are intended to be supportive of the 

New Freedom Initiative for people with disabilities as issued on February 1, 2001, by 

President George W. Bush. This includes a commitment by the Committee to support the 

President's belief "that community-based care is critically important to promoting 

maximum independence and to integrating individuals with disabilities into community 

life."
6

President’s Committee for People with Intellectual Disabilities

Among all recommendations presented below, the Committee considers

the first recommendation to be paramount.

1. Encourage HHS to officially designate people with intellectual disabilities as a

"Medically Underserved Population."

Ramifications: The "Medically Underserved Population" (MUP) designation will 

allow HHS and other grant administering agencies to consider the full range of 

persons with intellectual disabilities as an eligible category for programs such as 

health disparities research, medical and dental loan repayment programs and J-1 visa, 

foreign graduate programs. Such programs, when established in the community, will 

promote professional, university and research interest in this population as well as 

increase the number of providers, thus improving access to community-based care in 

keeping with the Olmstead Decision and the New Freedom Initiative.

2. Encourage HHS training vehicles to support better training of dental 

healthcare professionals in the community regarding intellectual disabilities.

Ramifications: Funding for fellowship training programs in developmental dentistry 

could be made available to encourage their growth and development. Additionally, 

primary care residency programs such as Internal Medicine, Family Medicine, 

General Practice Dentistry (GPR), Pediatric Dentistry or Advanced Education 

General Dentistry (AEGD) should have additional funding made available if they are 

able to show significant didactic and clinical training activity regarding intellectual 

disabilities. If additional funding cannot be made available, current funding for these 

programs should be attached to a requirement that these programs adequately train 

professionals regarding the care of the full range of people with intellectual 

disabilities.

3. Encourage continuing education of dental professionals in the community 

regarding the treatment of people with intellectual disabilities.

Ramifications: There is the need to stimulate the development of expertise among 

providers to offer community-based quality continuing education to physicians and 

dentists regarding dental and oral healthcare for the full range of people with 

intellectual disabilities. Funding for continuing education programs in developmental 

dentistry should be made available to encourage their growth and development. 

Additionally, continuing education programs in other areas such as GPR, Pediatric 

Dentistry or AEGD should have additional funding made available to stimulate 

increased community-based services for people with intellectual disabilities.
7

President’s Committee for People with Intellectual Disabilities

4. Encourage model demonstration projects designed to provide high- quality 

community-based dental care for people with intellectual disabilities; and 

support the use of technology in the form of Permanente Dental Associates 

(PDA) based prompting systems for people with intellectual disabilities to 

“coach” them on personal dental hygiene principles and techniques.

Ramifications: Community-based programs should be developed that combine 

services, training and research models focused on the full range of people with 

intellectual disabilities. When successful, these model programs could be expanded 

or replicated in a larger scale, community-based, demonstration project. Larger 

demonstration projects would provide greater opportunity for access to community 

dental health services, as well as promote better professional training and research. 

This should include the enlistment of direct care personnel in dental hygiene support. 

The development of criteria for high quality and community-based dental healthcare 

services should be included with recognition of the Olmstead Decision and the New 

Freedom Initiative.

5. Encourage a public awareness campaign regarding better oral health for 

people with intellectual disabilities.

Ramifications: There are a number of potential target markets for public awareness 

campaigns emphasizing better dental health and better overall health for the full range 

of citizens with intellectual disabilities. Different campaigns may be directed at 

accrediting agencies for providers of community-based dental healthcare, physicians 

and dentists, nurses and hygienists, educators, direct care support staff, family 

members and people with intellectual disabilities themselves. Special attention may 

be needed for difficult to reach rural communities vs. urban communities. 

Dissemination of this kind of information should be a priority of all agencies that are 

authorized to provide services and supports to people with intellectual disabilities.

The Office of the Surgeon General, the CDC and possibly the Centers for Medicare 

and Medicaid Services (CMS) may partner with private organizations to launch 

various public awareness campaigns. Additionally, it would be worthwhile to 

promote the preventive concept among caregivers that dental hygiene 

recommendations provided by dentists are just as significant as medication 

recommendations provided by physicians in terms of maintaining the overall health 

of the individual. Building on this preventive concept will be essential to public and 

private organizations whose mission is to guarantee adequate community-based 

dental healthcare for citizens with intellectual disabilities.

6. Encourage HHS research vehicles to conduct an epidemiological study on 

dental and oral diseases among Americans with intellectual disabilities, 

providing incidence and prevalence data on this vulnerable population.

Ramifications: There are a variety of sources for data on diseases among the full 

range of people with disabilities. However, scientifically-based epidemiological
8

President’s Committee for People with Intellectual Disabilities

data on dental and oral diseases among people with intellectual disabilities are 

believed to be either non-existing or rare in number and scope. CDC possesses 

recognized capability to conduct a scientifically sound epidemiological study on 

the subject.

Perhaps the National Center for Birth Defects and Developmental Disabilities of 

CDC, in collaboration with selected Institutes within the National Institutes of 

Health (NIH), such as National Institute of Child Health and Human Development 

(NICHD) and/or National Institute of Dental and Craniofacial Research (NIDCR), 

may be able to forge a partnership to develop a framework for obtaining valid and 

reliable data on incidence and prevalence of dental and oral diseases occurring in 

people with intellectual disabilities. The epidemiological study on dental and oral 

diseases in people with intellectual disabilities must include rural as well as urban 

areas, and all age groups and consider all racial and ethnic categories.

7. Encourage HHS research vehicles to conduct sample survey studies on the 

availability and gaps in dental and oral healthcare services for citizens with 

intellectual disabilities.

Ramifications: In determining the level of availability and/or the extent of gaps in 

the delivery of professional dental and oral healthcare services to the full range of 

people with intellectual disabilities, surveys of both urban and rural areas involving 

subjects from all age groups (young children, older children, young adults and older 

adults) should be considered to obtain a statistical representative population of 

persons with intellectual disabilities. Further, studies need to assess the availability 

or gaps in both preventive and treatment approaches in the delivery of dental and oral 

healthcare services to this population. It is suspected that vast gaps exist in the 

provision of dental and oral health services to citizens with intellectual disabilities. 

Perhaps Health Resources and Services Administration (HRSA), NIH (NICHD 

and/or NIDCR) and other HHS entities may collaborate to pursue studies on 

understanding the needs of the population and the levels of responsiveness by the 

professional dental community to this population.

8. Encourage HHS research vehicles to conduct studies to explore, develop and 

test new and alternative approaches for increasing and improving the 

effectiveness and efficiency in quality and quantity of dental and oral 

preventive and treatment services for persons with intellectual disabilities in 

our communities.

Ramifications: There is a need for HRSA and NIH (NICHD and/or NIDCR) to 

consider the exploration, development and testing of new and alternative approaches 

to the delivery of dental and oral healthcare to the full range of Americans with 

intellectual disabilities residing in the community. Studies would investigate a 

variety of innovative models that may improve and supplement existing traditional
9

President’s Committee for People with Intellectual Disabilities

approaches to the delivery of dental and oral healthcare services. There should be an 

examination of the full range of the population, from infancy through old age.

The proposed models need to give special consideration to adults and older adults 

who may no longer receive Medicaid support, pro bono or other sources of services. 

We need to be cognizant of the fact that many families with children with intellectual 

disabilities, including adults and the elderly with intellectual disabilities, may have 

limited resources to access dental and oral healthcare services in the community. 

Also, the proposed models should consider other portions of the population who may 

be identified as especially vulnerable and underserved, e.g., individuals with certain 

clinical syndromes who may pose special challenges to professionals and individuals 

receiving medications for epilepsy or other conditions or variant behaviors who may 

be at high risk.

9. Encourage HHS to explore and develop increased access to early screening 

and prevention services for dental and oral disorders in children with 

intellectual disabilities through local health departments and maternal and 

child health programs; and to provide Medical Home of Your Own Plans that 

support full access to dental and oral healthcare services.

Ramifications: Local Health Departments, through their Maternal and Child 

Health Programs, have supported services and supports aimed at special 

populations with disabilities, including the full range of children with intellectual 

disabilities. These programs provide an excellent opportunity to extend their 

capabilities to include preventive dental and oral healthcare services to serve these 

children at early ages in a community setting. Early preventive and screening 

measures are usually less costly than treatment at later ages.

Concomitantly, local health departments and maternal and child health programs 

should consider the development of possible dental referral resources in the 

community for early follow-up care and treatment of children with intellectual 

disabilities. Any gaps in community follow-up resources should be identified and 

documented for further consideration and action by community health planners. 

Medical Home of Your Own Plans are to include provisions for full access to 

dental and oral healthcare for children with intellectual disabilities. Also, 

assurance should be provided in local health plans for adequate staffing to extend 

coverage to rural areas in the area of dental and oral healthcare for families with 

children with intellectual disabilities. Such efforts are clearly in keeping with the 

Olmstead Decision and the President's New Freedom Initiative for community 

integration of people with disabilities.

10. Encourage the U.S. Department of Education to explore and develop increased 

access to early screening and prevention services on dental and oral disorders 

in students with intellectual disabilities through its school health and school 

nursing programs.
10

President’s Committee for People with Intellectual Disabilities

Ramifications: Local school systems have often supported school health and 

nursing services for their pupils. Community-based school programs provide 

excellent opportunities to expand services and supports for early screening, 

prevention and treatment in the area of dental and oral healthcare services for 

children with intellectual disabilities. School health personnel should play a key 

role in incorporating early screening and prevention processes for promoting 

dental and oral health among their students. Following screening, school health 

personnel would relate their impressions to the family for possible follow-up 

referral by them for professional examinations and treatment.

Teachers are in a unique position to readily observe their pupils in the classroom 

on a daily basis. It is known that dental and oral health may affect a student’s 

performance and behavior in the classroom, and teachers may observe possible 

dental or oral health problems. School health personnel should follow-up on any 

dental or oral health concerns expressed by teachers, just as they would in cases 

involving accidents, injuries, extreme behaviors, or other health related conditions 

or emergencies. School health personnel would assume responsibility for any 

screening, prevention and possible referral to dental or oral healthcare 

professionals in the community as they may deem necessary.

In association with this, school administrators and/or school health professionals 

should develop and update on a regular basis community-based referral resources 

for dental and oral healthcare as they would in cases of any acute or chronic 

health problem or emergencies that may be observed within the school. Further, 

community-based health referral resources would serve as a possible advisory 

resource on dental and oral health for parents and family members should they 

request such assistance. Such efforts by the school system on dental and oral 

health are clearly responsive to the Olmstead Decision and the President's New 

Freedom Initiative for community integration of people with disabilities.

Conclusion

In order to improve the quality of dental services available for the full range of people with 

intellectual disabilities living in the United States, the President's Committee for People with 

Intellectual Disabilities has identified a number of initiatives to be undertaken. It is 

important to note that the problems leading to the general lack of access to quality dental 

services for people with intellectual disabilities involve many factors. Any one action taken 

on its own would not likely produce the desired results. The above recommendations of the 

Committee are meant to work in concert with each other.

It is important to note that the Committee believes that many of the recommendations 

affecting dental care are designed to improve the general health status of the full range of 

people with intellectual disabilities. A more comprehensive and systemic approach to 

improving the overall health of people with intellectual disabilities would also include greater 

access to physical and mental health practitioners, services and supports. To address these 

additional concerns, the President's Committee expects to provide separate recommendations.
11

President’s Committee for People with Intellectual Disabilities

References 

1. Corbin, SB; Malina, K; Shepard, S. Special Olympics World Summer Games 2003, Healthy

Athletes Screening Data, Washington, D.C., Special Olympics, Inc. February 2005.

2. http://www.saiddent.org/modules/11_module3.pdf

3. Holder, M. Data presented at the 2004 annual meeting of the NASDDDS and to Governor Jeb

Bush, Dec. 2.

4. Surgeon General’s Report, U.S. Department of Health and Human Services, Washington, DC,

2000.

5. Wolff A.J.; Waldman H.B.; Milano M.; Perlman S.P. JADA, March 2004.

6. https://services.choruscall.com/links/epindex050817.html

7. Hood, H; Farman, A; Boggs, K. The Hazelwood Study, Part 1. J SE SOC PED DENT, Vol. 7, 

No. 3, 2001.

8. Dwyer. Oral Health America Survey. ADPD 1999.

9. General Accounting Office. Oral Health: Factors Contributing to Low Use of Dental Services 

by Low-Income Populations. HEH-00-149, September 2000.

10. American Dental Association. Survey Center. Survey of Dental Practice, 2003.
12

President’s Committee for People with Intellectual Disabilities

Adult Dental Medicaid Coverage – A State-by-State Overview

ADULT DENTAL BENEFITS IN MEDICAID: FY 2000, 2002, 2003, 2004 & 2005

00 02 03 04 05 00 02 03 04 05

Alabama None Nebraska Limited

Alaska Emergency Nevada Emergency

Arizona Limited Emergency New Hamp Emergency

Arkansas None New Jersey Full

California Full New Mexico Full Limited

Colorado None New York Full

Connecticut Full N Carolina Limited

Delaware None N Dakota Full

Florida Limited Emergency Ohio Limited

Georgia Emergency Oklahoma Emergency None Emergency

Hawaii Emergency Oregon Limited

Idaho Limited Emergency Pennsylvania Full

Illinois Limited Rhode Island Limited

Indiana Full Limited S Carolina Emergency

Iowa Full Limited S Dakota Limited

Kansas Limited Tennessee Emergency

Kentucky Limited Texas None

Louisiana Limited Utah Limited Emergency Limited

Maine* Emergency Vermont Limited

Maryland Emergency Virginia** None

Mass Full Limited Emergency Washington Full Limited

Michigan Full Emergency W Virginia Emergency

Minnesota Full Limited Wisconsin Full

Mississippi Emergency Wyoming Emergency

Missouri Limited none Dist of Col None

Montana Limited

As of May 2005

Key: Full Limited Emergency None

Copyright © 2005 American Dental Association. Permission is hereby granted to copy and distribute all or any portion of this 

work solely for noncommercial purposes, provided that you prominently display this copyright notice on each copy of the work.
13

President’s Committee for People with Intellectual Disabilities

ADULT DENTAL BENEFITS IN MEDICAID:

50 STATES & District of Columbia

FY2000 - CY2005

As of May 2005

BENEFIT 

STATUS 2000 2002 2003 2004 2005

Full 14 12 8 7 7

Limited 17 14 16 18 18

Emergency 13 17 18 19 18

None 7 8 9 7 8

Copyright © 2005 American Dental Association. Permission is hereby granted to copy and distribute all or any 

portion of this work solely for noncommercial purposes, provided that you prominently display this copyright notice 

on each copy of the work.
14

President’s Committee for People with Intellectual Disabilities

Illustration of conditions commonly experienced by people with intellectual disabilities who 

have medically and orally complex conditions and who do not receive dental and oral care.
15

President’s Committee for People with Intellectual Disabilities

PCPID Citizen Members

Madeleine C. Will Brenda A. Leath 

Chairperson Washington, D.C. 

Chevy Chase, Maryland

Kenneth E. Lohff 

Vijaya L. Appareddy, M.D. Milton, Wisconsin 

Vice Chairperson

Chattanooga, Tennessee Edward R. Mambruno

Waterbury, Connecticut

Nancy C. Blanchard

Lakeville, Minnesota Alvaro A. Marin

Huntington Park, California

James T. Brett

Dorchester, Massachusetts Michael J. Rogers

Kenmore, Washington

Mary C. Bruene

Des Moines, Iowa Windy J. Smith

Knoxville, Tennessee

Claudia L. Coleman

Los Altos, California Lon N. Solomon

Fairfax, Virginia

Olivia R. Colvin

San Antonio, Texas Karen L. Staley

Beaverton, Oregon

Zoraida F. Fonalledas

San Patricio, Guaynabo Gene C. Stallings

Puerto Rico Powderly, Texas

Kathy Hargett Annette M. Talis

Potomac, Maryland Madison, Wisconsin
16

President’s Committee for People with Intellectual Disabilities

PCPID Ex Officio Members

THE SECRETARY OF HEALTH AND HUMAN SERVICES 

The Honorable Michael O. Leavitt

Secretary

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

U.S. Department of Health and Human Services

Washington, DC

THE ATTORNEY GENERAL

The Honorable Alberto R. Gonzales

Attorney General

U.S. Department of Justice

Washington, DC

Represented by: 

Mark Gross

Deputy Chief, Appellate Section, Civil Rights Division

U.S. Department of Justice

Washington, DC

THE SECRETARY OF COMMERCE

The Honorable Carlos M. Gutierrez

Secretary

U.S. Department of Commerce

Washington, DC

Represented by: 

Henry Hager

Policy Analyst, Office of the Secretary 

U.S. Department of Commerce 

Washington, DC
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President’s Committee for People with Intellectual Disabilities

THE SECRETARY OF EDUCATION 

The Honorable Margaret Spellings 

Secretary

U.S. Department of Education

Washington, DC

Represented by: 

John Hager

Assistant Secretary for Special Education and Rehabilitative Services

U.S. Department of Education

Washington, DC

The Honorable Troy Justesen, Ed.D., Acting Assistant Secretary

Special Education and Rehabilitative Services

U.S. Department of Education

Washington, DC

THE SECRETARY OF HOMELAND SECURITY 

The Honorable Michael Chertoff

Secretary

U.S. Department of Homeland Security

Washington, DC

Represented by: 

Daniel W. Sutherland

Officer for Civil Rights and Civil Liberties 

Department of Homeland Security 

Washington, DC

THE SECRETARY OF HOUSING AND URBAN DEVELOPMENT 

The Honorable Alphonso Jackson

Secretary

U.S. Department of Housing and Urban Development

Washington, DC

Represented by: 

Scott Knittle

U.S. Department of Housing and Urban Development

Washington, DC
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President’s Committee for People with Intellectual Disabilities

THE SECRETARY OF INTERIOR 

The Honorable Gale A. Norton 

Secretary

U.S. Department of Interior

Washington, DC

Represented by:

Rejane “Johnnie” Burton

Director of the Minerals Management Service

U.S. Department of Interior

Washington, DC

THE SECRETARY OF LABOR

The Honorable Elaine L. Chao

Secretary

U.S. Department of Labor

Washington, DC

Represented by:

The Honorable W. Roy Grizzard, Jr., Ed.D.

Assistant Secretary, Office of Disability Employment Policy

U. S. Department of Labor

Washington, DC

THE COMMISSIONER OF THE SOCIAL SECURITY ADMINISTRATION 

The Honorable Jo Anne B. Barnhart

Commissioner

Social Security Administration

Baltimore, Maryland

Represented by:

The Honorable Martin H. Gerry

Deputy Commissioner, Disability and Income Security Programs

Social Security Administration

Baltimore, Maryland
19

President’s Committee for People with Intellectual Disabilities

THE SECRETARY OF TRANSPORTATION 

The Honorable Norman Y. Mineta 

Secretary

U.S. Department of Transportation

Washington, DC

Represented by: 

John P. Benison

U.S. Department of Transportation, Office of the Secretary

Washington, DC

THE CHAIR OF THE EQUAL EMPLOYMENT OPPORTUNITY COMMISSION 

The Honorable Cari Dominguez

Chairperson

Equal Employment Opportunity Commission

Washington, DC

Represented by: 

Mary Kay Mauren

Senior Attorney / Advisor

Equal Employment Opportunity Commission

Washington, DC

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: 

LaMonica Shelton 

Policy Analyst

Corporation for National and Community Services

Washington, DC
20

President’s Committee for People with Intellectual Disabilities

THE CHAIR OF THE NATIONAL COUNCIL ON DISABILITY 

The Honorable Lex Frieden

Chairman

National Council on Disability

Washington, DC

Represented by: 

Milton Aponte, Esq. 

Council Member

National Council on Disability

Cooper City, Florida
21

President’s Committee for People with Intellectual Disabilities

PCPID Staff

Sally Atwater Executive

Director Telephone: 202-

260-1500

E-mail: Satwater@acf.hhs.gov

Laverdia Taylor Roach

Special Assistant to the Executive Director

Telephone: 202-205-5970

E-mail: Lroach@acf.hhs.gov

George N. Bouthilet, Ph.D.

Research Director

Telephone: 202-205-5408

E-mail: Gbouthilet@acf.hhs.gov

Lena Stone Program 

Specialist Telephone: 202-

205-7989

E-mail: Lstone@acf.hhs.gov

Sheila Whittaker

Budget Officer

Telephone: 202-260-0452

E-mail: Swhittaker@acf.hhs.gov

Ericka Alston Executive

Assistant Telephone: 202-

619-3165

E-mail: Ecalston@acf.hhs.gov
22

President’s Committee for People with Intellectual Disabilities

Acknowledgments 

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

contribution of the following persons who helped shape this document.

James T. Brett

Chair, PCPID Dental Care Focus Group

Dorchester, Massachusetts

Julie Scott Allen Raymond Lala, D.D.S.

Manager Dental Officer

Legislative and Regulatory Policy Division of Medicine and Dentistry 

American Dental Association Health Resources and Services 

Washington, DC Administration

Rockville, Maryland

Stephen Corbin, D.D.S.

Dean Edward R. Mambruno

Special Olympics University Member

Washington, DC PCPID Dental Care Focus Group

Hartford, Connecticut

Conan C. Davis, D.D., M.P.H.

Chief Dental Officer Steven Perlman, D.D.S.

Centers for Medicare and Medicaid Boston University

Baltimore, Maryland Lynn, Massachusetts

Sanford Fenton, D.D.S. John Thornton, D.D.S. 

Professor University of Alabama 

University of Tennessee College at Birmingham

of Dentistry School of Dentistry

Memphis, Tennessee Birmingham, Alabama

Matthew Holder, M.D., M.B.A

Executive Director

American Academy of Developmental

Medicine and Dentistry

Louisville, Kentucky
23

President’s Committee for People with Intellectual Disabilities

The Committee also acknowledges and expresses appreciation to the following individuals for 

substantive review comments

Monique Fountain, M.D., M.P.H., M.B.A.

Director

Medical Home and Healthy Ready to Work Initiative 

Maternal and Child Health-Oral Health Resource Center 

Rockville, Maryland

Isabel Garcia, D.D.S., M.P.H

Director

Office of Science Policy and Analysis

National Institute of Dental and Craniofacial Research

National Institutes of Health

Bethesda, Maryland

Patricia Guard

Deputy Director

Office of Special Education Programs 

U.S. Department of Education 

Washington, DC

Merle McPherson, M.D.

Director

Division of Services for Children with Special Health Needs

Maternal and Child Health Bureau

Rockville, Maryland

Patricia Sheridan

Public Affairs Specialist

Office of Communication and Health Education 

National Institute of Dental and Craniofacial Research 

National Institutes of Health

Bethesda, Maryland

Susan Swenson 

Executive Director 

The Arc

Silver Spring, Maryland
24

President’s Committee for People with Intellectual Disabilities

Lawrence A. Tabak, D.D.S., Ph.D.

Director

National Institute of Dental and Craniofacial Research

National Institutes of Health

Bethesda, Maryland
President’s Committee for People with

Intellectual Disabilities

The Aerospace Center, Suite 701

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

President’s Committee for People with Intellectual Disabilities