1

Highlights

■ Though it does prohibit other 

forms of discrimination, the 

American Dental Association’s 

Principles of Ethics and Code 

of Professional Conduct

does not currently prohibit 

a practitioner from refusing 

to accept a patient based on 

their disability, generally.

■ The American Academy of 

Developmental Medicine 

notes that people with 

I/DD regularly face an uphill 

battle in finding clinicians 

properly trained to treat them 

because most dentists lack 

proper training and exposure 

regarding the health and 

psychological needs of the 

I/DD population.

■ Requirements of the 

Commission on Dental 

Accreditation do not require 

that dental school graduates 

be proficient in treating 

patients with I/DD, they 

only require graduates be 

competent in “assessing” 

treatment needs.

■ Absent more generous 

Medicaid coverage, solutions 

must be sought to help 

encourage dental care 

providers to serve this 

underserved population 

despite the financial 

predicaments of those 

providers.

Neglected for Too Long: Dental Care 

for People with Intellectual and 

Developmental Disabilities

Fall 2017

This policy brief is designed to provide insight concerning the lack of dental care 

many people with intellectual and developmental disabilities (I/DD)* continue 

to experience due to a shortage of properly trained dental care providers and, 

consequently, a lack of dental care providers willing to provide that care.

The brief will provide recommendations regarding how to begin to rectify the 

problem, including modifying dental school accreditation and professional ethics 

requirements. It will also recommend that Congress amend the Public Health 

Service Act,1 thereby providing more public funding and student loan debt 

forgiveness to improve dental care. 

Introduction

Unfortunately, interactions with patients who have disabilities may become 

uncomfortable when the care providers themselves are unfamiliar with their 

disabilities. This may lead to a lack of care and, accordingly, a lack of preventive 

care. Adults with disabilities are four times more likely to report their health to 

be only fair or poor than people without disabilities.2 More specifically, studies 

have shown that adults with developmental disabilities are at risk for multiple 

health problems including poor oral health.3 Further, in 2002, the U.S. Surgeon 

General reported that, compared with other populations, “adults, adolescents, 

and children with [intellectual disability (sic)] experience poorer health and more 

difficulty in finding, getting to, and paying for appropriate health care.”4

There are multiple factors to consider as to why people with I/DD face challenges 

in finding proper care, including, among others, guardianship complications and 

compensation.5 Often times providers are concerned about the length of time it 

might take to treat just one patient with I/DD.6 As noted in NCD’s 2005 publication 

The Right to Health: Fundamental Concepts and The American Disability 

Experience, dental care is a frequently forgotten area within the overall health 

care equation; and dental offices are often inaccessible and their equipment may 

not accommodate many disabilities. As was also noted, even when the physical 

environment has been adapted, a lack of understanding of disability issues among 

health professionals can minimize the effectiveness of the services provided, thus 

* NCD recognizes that not all people with I/DD require particular accommodations when receiving 

dental care.

National Council on Disability Issue Brief
2

Discuss with 

NCD

NCD is available to provide 

you with advice and 

assistance pertaining to 

these and other issues of 

importance to people with 

disabilities and welcomes 

any inquiries from you. 

NCD would be happy to 

provide information and 

analysis in person or 

via email to Members of 

Congress and staff. Please 

contact NCD’s Legislative 

Affairs Specialist, Phoebe 

Ball, at pball@ncd.gov, or by 

phone at (202) 272-0104.

creating another roadblock for those claiming their health care rights. Insufficient 

dental school training in this space is part and parcel of these phenomena.

While laws such as the Rehabilitation Act7 and, more broadly, the Americans 

with Disabilities Act8 are useful tools for claiming one’s right to accessible health 

care, including dental care, the cost to litigate such cases is not inexpensive. It 

is prudent to look for solutions to a problem before the need for litigation arises. 

To begin with, NCD recommends the American Dental Association review its 

current Principles of Ethics and Code of Professional Responsibility and make 

certain modifications to better reflect the rights of people with disabilities. 

Finding financial incentives through government programs for care providers to 

train for and treat people with I/DD is also worth considering.

The lack of proper training among dental students is among the most rooted 

problems. These future care providers are not adequately exposed to the I/DD 

population during their education to begin with.9 While there are some dental 

programs across the United States that do train their students in the care of 

patients with I/DD, a sample of which are examined here as potential models for 

the creation of other such programs, NCD recommends all dental students have 

more robust training in the care of I/DD patients. As such, a modification by the 

Commission on Dental Accreditation is also worth examining.

Principles of Ethics and Code of Professional Conduct

The American Dental Association’s Principles of Ethics and Code of Professional 

Conduct does not prohibit a practitioner from refusing to accept a patient based on 

their disability, generally. It does, however, prohibit other forms of discrimination 

at Section 4.A., as provided, where it states that “while dentists, in serving the 

public, may exercise reasonable discretion in selecting patients for their practices, 

dentists shall not refuse to accept patients into their practice or deny dental 

service to patients because of the patient’s race, creed, color, sex or national 

origin.”10 This point is relevant because the established principles of ethics in a 

given profession is typically the guide a professional is taught to use in determining 

how to conduct themselves as they push forward in their career. Those principles 

of ethical obligations (as might be adopted by each respective state’s law), also 

subjects practitioners to a legal liability concerning the proper execution of their 

professional conduct. Interestingly, the American Dental Association’s principles 

do, though, mention one disability at Section 4.A.1. with respect to patients with 

bloodborne pathogens, as an advisory opinion, wherein it states that: 

A dentist has the general obligation to provide care to those in need. 

A decision not to provide treatment to an individual because the individual 

is infected with Human Immunodeficiency Virus [(HIV)], Hepatitis B Virus, 

Hepatitis C Virus or another bloodborne pathogen, based solely on that 

fact, is unethical. Decisions with regard to the type of dental treatment 

provided or referrals made or suggested should be made on the same 

basis as they are made with other patients. As is the case with all patients, 

the individual dentist should determine if he or she has the need of 

another’s skills, knowledge, equipment or experience . . .”11
3

Related NCD 

Work

The Current State of Health 

Care for People with 

Disabilities (2009)

https://go.usa.gov/xnC9K

The insertion of this “advisory opinion” would appear to be in response to 

Bragdon v. Abbott, 524 U.S. 624 (1998) wherein the U.S. Supreme Court held 

that an individual’s positive HIV status is a “disability” under the Americans 

with Disabilities Act.12 The Court further stated that an HIV positive individual’s 

dentist, providing services as a public accommodation, would be in violation of 

that Act unless it be shown that the provider was faced with a risk to the health 

or safety of others. Reasonably then, and more broadly, NCD recommends 

section 4.A. of these principles be modified to reflect that other disabilities 

covered under the Act should also be protected. The relevant section should 

state that: 

While dentists, in serving the public, may exercise reasonable discretion 

in selecting patients for their practices, dentists shall not refuse to accept 

patients into their practice or deny dental service to patients because of 

the patient’s race, creed, color, sex, national origin or disability, unless it 

is medically necessary due to the patient’s disability or medical condition, 

in which case the dentist shall refer the patient to another care provider 

with the specialized skill and training required to meet the patient’s needs.

[Emphasis added].

This suggested language is inclusive while also recognizing that not every 

practitioner, at present, will be properly trained in providing specialized care if 

needed.

Dental Training

The American Academy of Developmental Medicine and Dentistry (AADMD) 

Consensus Statement on Health Disparities for Persons with Neurodevelopmental 

Disorders and Intellectual Disabilities notes that people with I/DD regularly face 

an uphill battle in finding clinicians properly trained to treat them.13 This is because 

most physicians and dentists lack the proper training and exposure with respect 

to the health and psychosocial needs of this population.14 According to one study, 

more than 50 percent of dental and medical school deans have stated that their 

graduates are not competent to treat patients with I/DD.15 As a result, people with 

I/DD are more likely to have poor oral hygiene, periodontal disease, and untreated 

dental caries than are members of the general population.16 Additionally, people 

with I/DD have been more likely to not have had their teeth cleaned in the past 

five years, or never to have had their teeth cleaned, than those who are not 

disabled.17

It has been reported that due to the lack of proper skills among dentists, dental 

care is often more difficult to find than any other type of service for people with 

I/DD.18 Again, society’s ability to provide proper dental care to people with I/DD 

rests on whether dentists are properly trained to provide such services at the 

outset, and said training has been all too scarce. A series of studies of dental and 

dental hygiene educational programs through the 1990s and early 21st century 

found that more than 50 percent of dental students reported no clinical training 

in the care of patients with such specific care requirements, and 75 percent 

reported little to no preparation in providing care to these patients.19 Only 
4

According to a series of 

studies, 75% of dental 

students reported little to 

no preparation in providing 

care to people with I/DD.

10 percent of general dentists responding in a study indicated that they treated 

children with cerebral palsy, intellectual disability, or medically compromising 

conditions often or very often.20 Further, a national study of dental hygiene 

programs reported similar findings for treatment of people with disabilities in that 

48 percent of 170 programs offered 10 hours or less of didactic training (including 

14 percent with 5 hours or less); and 57 percent of programs reported no clinical 

experience.21

Dental School Curricula Requirements

New language for dental and dental hygiene education programs were adopted 

by the Commission on Dental Accreditation (CODA) in 2004.22 However, there is 

still only one accreditation requirement for dental schools with respect to treating 

patients characterized as requiring specialized dental care, which states, in only 

quite general terms, that:

Graduates must be competent in assessing the treatment needs of 

patients with special needs. Intent: An appropriate patient pool should be 

available to provide experiences that may include patients whose medical, 

physical, psychological, or social situations make it necessary to consider 

a wide range of assessment and care options. The assessment should 

emphasize the importance of non-dental considerations. These individuals 

include, but are not limited to, people with developmental disabilities, 

cognitive impairment, complex medical problems, significant physical 

limitations, and the vulnerable elderly. Clinical instruction and experience 

with patients with special needs should include instruction in proper 

communication techniques and assessing the treatment needs compatible 

with the special need.23

This standard clearly does not require that graduates be proficient in the 

techniques necessary to provide treatment, merely that they “be competent in 

assessing the treatment needs” of patients with disabilities. Gaining expertise 

in these areas requires added education and training beyond what is standard 

dental school curricula. There are, however, some dental schools that go 

beyond what is required in order to train dentists that are truly knowledgeable 

and practiced in providing quality specialized dental care to patients, including 

patients with I/DD.

Sample of Programs that Train Dental Students in Providing 

Care for Patients with I/DD

Though they are few and far between, the dental school programs throughout 

the United States that have built clinics in this space have shown themselves 

to be leaders in providing education and experience in the treatment of people 

with I/DD, including programs at Tufts, West Virginia University, the University 

of Pittsburgh, the State University of New York (SUNY) at Stony Brook, and 

Rutgers University (among others). As previously noted, the Commission on 

Dental Accreditation has set a standard that dental school graduates “must be 

competent in assessing the treatment needs of patients with special needs.”24
5

While it is certainly vital that dentists can “assess” patients’ treatment needs, 

it is also imperative that dental programs attempt to prepare students for the 

actual treatment of patients with I/DD. Through its discourse with the American 

Academy of Developmental Medicine and Dentistry in examining this issue, 

NCD was pointed to two dental programs that serve as good specific examples 

of schools that go beyond the “assessment” requirement in the training of 

their students: Rutgers and SUNY-Stony Brook.

Within the Rutgers program,25 training of predoctoral students includes both 

didactic and clinical components. Rutgers’ Special Care Treatment Center (SCTC) 

facility contains nine fully equipped dental operatories, one of which is dedicated 

to dental hygiene and two of which are specially configured to accommodate large 

wheelchairs and stretchers. The operatories, unlike standard dental school student 

treatment bays, are all enclosed to permit privacy and are equipped with individual 

x-ray and nitrous oxide delivery units. 

Lectures to the predoctoral students by SCTC faculty regarding care for patients 

with I/DD are provided in several courses spread throughout the four-year 

curriculum, including among others: 1) pediatric dentistry: two lecture hours 

focusing on medical and dental issues in the most commonly encountered I/DD 

populations; 2) clinical communications: two lecture hours addressing specialized 

communication challenges and techniques for people with I/DD; 3) third-year 

problem-based learning seminar: three small-group seminar hours covering 

case-based assessment of people with I/DD primarily, including medical history, 

consultations and diagnostics, triage and treatment planning essentials; and 

4) a fourth-year elective in specialized care dentistry: 20 lecture hours of advanced 

topics in specialized care, focusing on interdisciplinary issues. SCTC faculty also 

provide didactic education to pediatric dentistry and prosthodontic postgraduate 

programs as well as dental assisting and dental hygiene programs, and a lecture 

series for oral medicine and general practice residency residents and fellows. SCTC 

faculty have also provided continuing dental education for community dentists 

through the school’s program.

All fourth-year dental students at Rutgers are required to complete a one-week 

rotation through the SCTC. During this week, they serve as direct care providers 

to patients with I/DD primarily, as well as the complex geriatric population. The 

students provide any needed diagnostic, preventative, restorative or surgical 

services under the supervision of SCTC faculty. There is a strong focus on 

reinforcing the individuality of people with disabilities, identifying opportunities for 

interdisciplinary care, developing communication skills, integrating medical and 

dental knowledge as well as principles of basic sciences in treatment planning and 

care, and introducing specialized techniques optimized for people with disabilities, 

if needed. By the completion of the week-long rotation, students demonstrate 

competency in patient assessment by taking and passing a patient-based 

competency exercise. 

Similarly, in the SUNY-Stony Brook School of Dental Medicine, a program was 

created to prepare students for the treatment of patients with disabilities whereby 

those students receive the didactic portion beginning in their second year as an 

integrated component of the Children’s Dentistry curriculum. The course includes 
6

Supported 

Decision Making

Supported decision-making 

(SDM) is an alternative to 

guardianship that allows an 

individual with a disability 

to work with a support 

network of people they 

have chosen to help them 

make decisions including 

regarding medical care. 

Dentists and other medical 

practitioners who are 

required to obtain informed 

consent should be aware of 

this and other alternatives 

to guardianship so that 

they can accommodate the 

individual.

Supported decision-making is 

discussed in depth in NCD’s 

report on guardianship, 

which will be posted to NCD’s 

website in 2018.

a seven-hour series addressing the needs of patients with varied disabilities, 

including risk of disease identification, appropriate scope of care, informed 

consent, management of behavioral issues, and conventional versus alternative 

treatment approaches. In their third-year, students are presented with medical, 

developmental, and social topics specific to care of patients with disabilities. As 

the students progress during that year, they provide treatment to patients with 

increasingly complex needs and management challenges. Finally, in their senior 

year, all students participate in a 13-week comprehensive care clinic that is specific 

to adults with disabilities. A postgraduate program is also available and includes a 

12-month fellowship.26

Clearly, the more experience and practice dental students receive with I/DD 

patients the more comfortable they will be to provide services to that population 

upon entering private practice. In consideration of this, NCD recommends 

a modification to the relevant dental school accreditation requirement.

As opposed to simply requiring that students be “competent in assessing the 

treatment needs of patients with special needs,” NCD recommends students 

also “demonstrate clinical practice skills to perform the designated 

treatment; and to demonstrate a sensitivity to their ancillary needs (including 

respectful nomenclature, supported decision making, knowledge of living 

arrangements that might impact compliance, communication avenues, and 

systems of support).”

Per Dr. Evan Spivack, Professor of Pediatric Dentistry at the SCTC, the thinking 

behind the mere “assessment” requirement of the CODA standard is that not 

every school has an equitable amount of resources to build such a specific clinic. 

These programs also require hiring qualified professors who are content with 

the salary a university can provide in comparison to how much compensation is 

available in private practice. The creation of such a clinic has often come by way of 

educators with a personal dedication to the cause of proper treatment for those in 

the I/DD community. 

Dr. Steven Perlman, Clinical Professor of Pediatric Dentistry at the Boston 

University School of Dental Medicine, added that patients with I/DD often 

have no choice but to travel several hours away to clinics such as those found 

at Rutgers and SUNY-Stony Brook because of the difficulty in finding private 

practitioners who are properly trained, willing, and able to provide the care they 

need. Perlman, who provided care for the late Rosemary Kennedy, at the request 

of her sister, the late Eunice Kennedy Shriver, has noted that many patients with 

I/DD may need some form of sedation or general anesthesia to complete the 

medically necessary dental care. In speaking with other practitioners, it was also 

noted that in the rare instance that the treatment provider did have the proper 

training, this process clearly requires more time than other patients are likely 

to need, thus private practitioners, many of whom have student loan debt they 

must pay, obviously find it more financially feasible to treat three patients in the 

time it would take to care for one patient with I/DD (a patient also unlikely to have 

private insurance).
7

Medicaid

Approximately 60 percent of people in the United States with I/DD rely on Medicaid 

for their health insurance coverage;27 and Medicaid’s reimbursement doesn’t always 

suffice. While comprehensive dental coverage is mandatory for children enrolled in 

Medicaid, dental benefits for adults eligible for Medicaid varies depending on the 

state.28 States determine the scope of the dental services covered. While some 

states provide extensive coverage with more generous expenditure caps annually, 

others provide limited coverage with shorter caps, and some states only provide 

coverage for emergency relief alone.29 Obviously, there is an ongoing debate 

concerning the proper allocation of public funds with respect to health care, and 

more specifically dental care, both nationally and within each respective state; 

however, the effect proper dental care has on preventing larger health concerns 

and costs cannot be underestimated.30 NCD recommends states that have 

limited their Medicaid coverage of adult dental benefit identify and implement 

mechanisms to pay for and provide more extensive coverage, including a 

per-person annual expenditure cap of at least $1,000. Ultimately, absent more 

generous Medicaid coverage funding, solutions must be sought to not only produce 

better trained dental care providers in this space, but also to help encourage health 

care providers to serve the underserved despite their financial predicaments.

Underserved Population

Many federal programs designed to improve access to health care services 

are offered through designations made by the Health Resources and Services 

Administration (HRSA), in accordance with the Public Health Service Act as 

amended.31 As noted above, some people with I/DD experience significant health 

disparities, poorer health, and a lack of access to care. Also, as previously noted, 

not enough providers and specialists are trained or make themselves available 

to provide proper dental care to people of the I/DD population, thus creating a 

situation of medical underservice whereby patients must travel exceptionally long 

distances to find the clinics that do provide specialized care. 

Currently, government programs that may help resolve these issues require 

population groupings based upon geography, which is problematic for people 

with I/DD. Historically, many people with I/DD were institutionalized and received 

what medical and dental care they may have received in the facility in which they 

resided, far removed from the rest of society and, for many decades, outside of 

meaningful oversight in terms of their care. The conditions at institutions such as 

Willowbrook, the largest facility of its kind and the most notorious for having been 

described by Robert Kennedy as a “snakepit,” were extremely poor, with one 

former resident blaming her 19 years at Willowbrook for her mouth full of cavities.32

(Because of this history and because institutionalization runs counter to the goals 

of the Americans with Disabilities Act, NCD has a longstanding position in favor of 

deinstitutionalization.) 

Following the exposure of the deplorable conditions of many state-run institutions 

in the 1970s and following, the trend toward deinstitutionalization swept 

across the country and people with I/DD have no longer necessarily lived in 

congregate settings in the same geographic location, thus ineligible to access 
8

many government programs that may otherwise help address their ongoing 

inadequate dental care.33 Because deinstitutionalization was a significant civil 

rights achievement that advanced the equality of opportunity for people with 

disabilities to be full participants in society with respect to housing, employment, 

and community living, it should not result in a different step backward in equality 

of opportunity with respect to finding and availing oneself of accessible and 

appropriate dental care.34

As a means of helping to rectify the lack of proper dental care for people with 

I/DD, NCD recommends that Congress further amend the Public Health 

Services Act to authorize additional grants to public and nonprofit dental 

care providers to expand resources (including but not limited to proper 

and accessible equipment) and deliver, in specific, proper dental care to 

people with I/DD in scarcity areas (geographic areas that are not reasonably 

accessible to facilities equipped to provide such care), and to bolster loan 

repayment programs (not excluding the Student to Service Loan Repayment 

Program of the National Health Service Corps) for dentists training or already 

properly trained in the treatment of people with I/DD and are willing to 

provide that care in the aforementioned scarcity areas. NCD recommends 

that Congress form an advisory committee to determine and rectify any 

existing or potential conflicts of laws or programs, or other identifiable 

impediments, as a means of streamlining efforts for maximum efficiency in 

achieving the policy goals outlined above.

Conclusion

Post-deinstitutionalization, many people of the I/DD population have become 

more reliant on local practitioners for their dental care and specialized clinics 

are often quite a distance away from many who could make use of them. It is 

imperative that members of the dental profession recognize their professional 

responsibility and dental students be provided with improved training in this 

area accordingly. It is also essential that Congress strengthen programs that 

provide dental practitioners additional incentives to provide that care once they 

enter practice.

Limited access to proper dental care is a significant problem for many people with 

I/DD. NCD’s recommendations are intended to rectify this problem and secure 

professional dental care for people with I/DD in the same manner as others and in 

compliance with the Americans with Disabilities Act and the Rehabilitation Act.

Recommendations

Recommendation to Federal Policymakers

1. NCD recommends that Congress further amend the Public Health Service 

Act to authorize additional grants to public and nonprofit dental care providers to 

expand resources (including but not limited to proper and accessible equipment) 

and deliver, in specific, proper dental care to people with I/DD in scarcity areas 

(geographic areas that are not reasonably accessible to facilities equipped to 

provide such care), and to bolster loan repayment programs (not excluding the 
9

Student to Service Loan Repayment Program of the National Health Service Corps) 

for dentists training or already properly trained in the treatment of people with 

I/DD and are willing to provide that specialized care in the aforementioned scarcity 

areas.

2. NCD recommends that Congress form an advisory committee to determine and 

rectify any existing or potential conflicts of laws or programs, or other identifiable 

impediments, as a means of streamlining efforts for maximum efficiency in 

achieving these policy goals.

Recommendation to State Policymakers

3. NCD recommends states that have limited their Medicaid coverage of adult 

dental benefits provide the more extensive coverage options, including a perperson annual expenditure cap of at least $1,000.

Recommendation to the Commission on Dental Accreditation

4. NCD recommends a modification to the relevant dental school accreditation 

requirement. All dental students must have more robust training in the care 

of I/DD patients. As opposed to simply requiring that dental students be 

“competent in assessing the treatment needs of patients with special needs,” 

NCD recommends students be required to “demonstrate clinical practice skills 

to perform the designated treatment; and to demonstrate a sensitivity to their 

ancillary needs (including respectful nomenclature, supported decision making, 

knowledge of living arrangements that might impact compliance, communication 

avenues, and systems of support).”

Recommendation to the American Dental Association

5. NCD recommends that the American Dental Association review its current 

Principles of Ethics and Code of Professional Responsibility and make certain 

modifications to better reflect the rights of people with disabilities. It must modify 

its standard with respect to Patient Selection whereby it is established that “While 

dentists, in serving the public, may exercise reasonable discretion in selecting 

patients for their practices, dentists shall not refuse to accept patients into their 

practice or deny dental service to patients because of the patient’s race, creed, 

color, sex, national origin or disability, unless it is medically necessary due to the 

patient’s disability or medical condition, in which case the dentist shall refer the 

patient to another care provider with the specialized skill and training required to 

meet the patient’s needs.”

Endnotes

1. 42 U.S.C. § 201 et seq.

2. Krahn, et. al. 2015. “Persons with Disabilities as an Unrecognized Health Disparity.” American 

Journal of Public Health 105: 198.

3. National Council on Disability. 2009. “The Current State of Health Care for People with Disabilities.” 86.

4. Slashcheva, Lyubov, Rick Rader, MD, and Stephen B. Sulkes, MD. 2016. “Would People with 

Intellectual Disabilities Benefit from Being Designated ‘Underserved’?” American Medical 

Association Journal of Ethics 18(4): 424.

5. Ibid., 425.
10

6. National Council on Disability. 2009. “The Current State of Health Care for People with Disabilities.” 89.

7. 29 U.S.C. § 794.

8. 42 U.S.C. § 12101.

9. Slashcheva, Lyubov, Rick Rader, MD, and Stephen B. Sulkes, MD. 2016. “Would People with 

Intellectual Disabilities Benefit from Being Designated ‘Underserved’?” American Medical 

Association Journal of Ethics 18(4): 425.

10. American Dental Association. Principles of Ethics and Code of Professional Conduct. 4.A. 

(Accessed October 20, 2017.)

11. Ibid., 4.A.1.

12. 42 U.S.C. § 12101.

13. American Academy of Developmental Medicine and Dentistry Consensus Statement on Health 

Disparities for Persons with Neurodevelopmental Disorders and Intellectual Disabilities. http://

aadmd.org/articles/health-disparities-consensus-statement. (Accessed October 16, 2017.)

14. Ibid.

15. Kornblau, Barbara L., JD, OTR, FAOTA. “The Case for Designating People with Intellectual and 

Developmental Disabilities as a Medically Underserved Population.” Autistic Self Advocacy 

Network, 9.

16. Morgan, et al. 2012. “The Oral Health Status of 4,732 Adults with Intellectual and Developmental 

Disabilities.” Journal of the American Dental Association: 839.

17. Kornblau, Barbara L., JD, OTR, FAOTA. “The Case for Designating People with Intellectual and 

Developmental Disabilities as a Medically Underserved Population.” Autistic Self Advocacy 

Network, 13.

18. National Council on Disability. 2009. “The Current State of Health Care for People with Disabilities.” 87.

19. Waldman, DDS, MPH, Ph.D., H. Barry; Sanford J. Fenton, DDS, MDS; Steven P. Perlman, DDS, 

MScD; Deborah A. Cinotti, DDS. 2005. “Preparing Dental Graduates to Provide Care to Individuals 

with Special Needs.” Journal of Dental Education: 250.

20. Ibid.

21. Ibid.

22. Ibid., 251.

23. Commission on Dental Accreditation. Accreditation Standards for Dental Education Programs. 

§ 2-24.

24. Ibid.

25. Information regarding the Rutgers School of Dental Medicine curriculum was submitted to NCD by 

Evan Spivack, DDS, FAGD, Professor, Pediatric Dentistry, Special Care Treatment Center, Rutgers 

School of Dental Medicine, February 16, 2017.

26. Waldman, DDS, MPH, Ph.D., H. Barry; Sanford J. Fenton, DDS, MDS; Steven P. Perlman, DDS, 

MScD; Deborah A. Cinotti, DDS. 2005. “Preparing Dental Graduates to Provide Care to Individuals 

with Special Needs.” Journal of Dental Education: 252.

27. The Arc. “Still in the Shadows with Their Future Uncertain.” http://www.thearc.org/document.

doc?id=3672. (Accessed October 16, 2017.)

28. Center for Health Care Strategies, Inc. 2017. “Medicaid Adult Dental Benefits: An Overview.” 1.

29. Ibid.

30. United States Department of Health and Human Services. “Oral Health in America: A Report 

of the Surgeons General.” https://www.nidcr.nih.gov/datastatistics/surgeongeneral/report/

executivesummary.htm#message.

31. 42 U.S.C. § 201 et seq.

32. National Public Radio, “Remembering an Infamous New York Institution.” http://www.npr.org/

templates/story/story.php?storyId=87975196. (Accessed October 17, 2017.)

33. Section 330 of the Public Health Service Act. 42 USCS § 254b(b)(3)(B).

34. Olmstead v. L.C., 527 U.S. 581 (1999).

NCD would like to acknowledge the following individuals and thank them for their input in relation 

to this policy brief: Dr. Evan Spivack, Professor of Pediatric Dentistry, Rutgers School of Dental 

Medicine; Dr. Steven Perlman, Clinical Professor of Pediatric Dentistry, Boston University School 

of Dental Medicine; and Dr. Rick Rader, Director, Morton J. Kent Habilitation Center, Orange Grove 

Center, Chattanooga, TN.