Medicaid Oral Health Coverage for Adults 

with Intellectual & Developmental 

Disabilities – A Fiscal Analysis

National Council on Disability

March 9, 2022
National Council on Disability (NCD)

1331 F Street NW, Suite 850

Washington, DC 20004

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities – 

A Fiscal Analysis

National Council on Disability, March 9, 2022

Celebrating 38 years as an independent federal agency

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information:

ncd@ncd.gov Email

202-272-2004 Voice

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The views contained in this report do not necessarily represent those of the Administration, as this and 

all NCD documents are not subject to the A-19 Executive Branch review process.
National Council on Disability

An independent federal agency making recommendations to the President and Congress 

to enhance the quality of life for all Americans with disabilities and their families.

Letter of Transmittal

March 9, 2022

President Joseph R. Biden Jr.

The White House

Washington, DC 20500

Dear Mr. President,

People with Intellectual and Developmental Disabilities (I/DD) in the United States suffer significant 

health disparities compared to their nondisabled counterparts and report unmet medical, prescription 

and dental needs. With respect to dental needs, Medicaid does not uniformly provide adults with I/DD 

dental coverage and in 12 states no basic Medicaid dental benefits are provided for adults with I/DD, 

aside from limited waiver programs available in seven of those states. As a result, people with I/DD in 

those jurisdictions often forego preventative and routine dental care and seek emergency dental care in 

hospital emergency rooms at significantly greater costs.

On behalf of the National Council on Disability (NCD), your federal disability policy advisor, I submit 

this report for your consideration entitled Medicaid Oral Health Coverage for Adults with Intellectual 

and Developmental Disabilities – A Fiscal Analysis. In this report, NCD examines the cost in those 

jurisdictions of not providing Medicaid dental benefits for adults with I/DD and determines that it is 

more cost effective and fiscally responsible to provide those benefits than to continue excluding those 

benefits. Doing so is also consistent with your Administration’s commitment to equity for underserved 

communities, including people with disabilities, and your commitment to fiscal responsibility.

This report was motivated by a central research question: should the Centers for Medicare and 

Medicaid Services require all state Medicaid agencies to implement Medicaid reimbursement and 

payment policies that promote access to dental care for adults with I/DD, and would doing so be costeffective over the long term? The answer is “absolutely yes” to both questions. Because Medicaid 

adult dental benefits vary widely by state, and because there is a dearth of research on how the 

Medicaid program should best address oral health disparities for adults with I/DD, this report examined 

the relationship between states’ Medicaid dental benefits and the receipt of basic dental care among 

adults with I/DD; the relationship between state waiver programs and receipt of dental care; and the 

estimated cost and potential savings of implementing basic dental Medicaid benefits in states that do 

not currently offer it. Additionally, this study examined the role of coordination between Developmental 

Disability agencies and Medicaid agencies for improving access to dental care. Finally, the study 

identified promising Medicaid-funded state and private strategies for expanding dental care for adults 

with I/DD.

Key findings include that in the 12 states that do not currently provide dental benefits, the total 

estimated cost of providing extensive dental benefits to adults with I/DD would be approximately 

1331 F Street, NW ■ Suite 850 ■ Washington, DC 20004

202-272-2004 Voice ■ 202-272-2074 TTY ■ 202-272-2022 Fax ■ www.ncd.gov
$19.6 million annually, with those state government’s responsible for approximately $7.3 million of 

that cost. NCD estimates that these costs would be more than fully recovered through reductions 

in emergency department use and hospital admissions and reductions in the cost of treating 

several chronic diseases the root cause of which are poor oral health. We estimate federal and state 

governments combined would realize a return on investment (ROI) of approximately $7.7 million 

beyond recovering the initial cost, annually, and the share of that ROI for those 12 states would total 

close to $3 million, annually.

NCD looks forward to briefing your Administration on the findings and recommendations in this report 

and stands ready to work with federal agencies, state governments, the disability community, and 

other stakeholders to facilitate better access to oral healthcare for people with I/DD through Medicaid, 

and to do so as a means of fiscal responsibility as well.

Respectfully submitted,

Andrés J. Gallegos

Chairman

(The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate and the Speaker of the 

U.S. House of Representatives.)

2 National Council on Disability
National Council on Disability Members and Staff

Members

Andrés J. Gallegos, Chairman

Jim Brett, Vice Chair

Jim Baldwin

David D’Arcangelo

Munr Kazmir, M.D.

Rick Rader, M.D.

Neil Romano

Daniel C. Schreck

Mary G. Vought

Staff

Anne C. Sommers McIntosh, Executive Director

Joan M. Durocher, General Counsel & Director of Policy

Lisa Grubb, Director of Administration, Finance, and Operations

Stacey S. Brown, Staff Assistant

Kimie Eacobacci, Legislative Affairs Specialist

Netterie Lewis, Administrative Support Specialist

Amy Nicholas, Senior Attorney Advisor

Nick Sabula, Public Affairs Specialist

Amged M. Soliman, Senior Attorney Advisor

Ana Torres-Davis, Senior Attorney Advisor

Keith Woods, Financial Management Analyst

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 3
4 National Council on Disability
Contents

Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Executive Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Acronym Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

Chapter 1: Research Questions and Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Research Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Virtual Stakeholder Meeting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Key Informant Interviews . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Questionnaire of Directors of State Developmental 

Disabilities Agencies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Medicaid Oral Health Policy Database (MOHPD) . . . . . . . . . . . . . . . .  2

T-MSIS Data Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Chapter 2: Barriers to Oral Health Care for Adults with I/DD . . . . . . . . . . . . . . . . . . . .  2

Chapter 3: The Role of Medicaid in Providing Dental Services 

for Adults with I/DD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  3

Chapter 4: Analysis of State Medicaid Dental Coverage, Medicaid 

Reimbursement Rates, and Receipt of Oral Health Care Among 

Adults with I/DD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  3

Chapter 5: Opportunities and Recommendations for Change 

Within Medicaid . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Opportunities in Medicaid . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Medicaid-funded Initiatives to Expand Access to Services . . . . . . . . . . . .  5

Chapter 6: Opportunities Outside of Medicaid . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  5

Areas for Future Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  5

Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  5

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 5
Key Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Congress: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

States: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

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

Appendices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Appendix A: Agenda and Attendee List for Virtual Stakeholder Meeting . . . . . . . . . .  6

Appendix B: Questionnaire to State Directors of Developmental 

Disabilities Agencies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Appendix C: Details About the Fifty-State and DC Medicaid Oral Health 

Policy Database . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  7

Appendix D: ICD-10 Diagnosis Codes for Autism Spectrum Disorder, 

Intellectual Disability and Related Conditions, Cerebral Palsy, and 

Other Developmental Delays . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  8

Appendix E: Details About T-MSIS Sample . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  8

Appendix F: Developmental Disabilities Agency Leader Questionnaire 

Responses About Barriers to Oral Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  8

Endnotes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  9

6 National Council on Disability
Acknowledgments

The National Council on Disability wishes to express its deep appreciation to the National Center for 

Children in Poverty, Bank Street College of Education, which conducted the primary research and 

writing of this report. NCD wishes to thank Heather Koball, PHD, Chelsea Fosse, DMD, MPH, and 

Suma Setty, MPH.

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 7
8 National Council on Disability
Executive Summary

Adults ages eighteen years and older with 

intellectual and developmental disabilities 

(I/DD) experience poorer oral health 

and significant barriers to obtaining oral health 

care, relative to adults without I/DD. Poor oral 

health not only often leads to chronic oral pain 

and disease, it also increases the likelihood of 

experiencing poor physical health. Further, poor 

oral health can lead to poor nutrition, poor sleep, 

and reduced quality of life.

Most adults with I/DD rely on Medicaid 

for medical and dental care. State Medicaid 

programs are not 

required to provide adults 

with dental benefits. 

Currently, twelve states 

do not provide adult 

Medicaid beneficiaries 

with coverage for basic dental care, exacerbating 

the barriers to oral health care faced by adults 

with I/DD.

Recent state-level research suggests that 

providing adults with dental benefits through 

Medicaid reduces overall Medicaid costs 

for states. Expanded Medicaid coverage 

has been linked to reductions in emergency 

department (ED) visits and hospital admittances 

for nontraumatic dental condition (NTDC). Further, 

studies indicate that receipt of basic dental 

care reduces the cost of treating other chronic 

conditions, such as diabetes and heart disease.

Even in states that provide dental benefits 

in Medicaid, people with I/DD still face barriers 

to receiving care, in part because of the lack of 

dental providers who participate in Medicaid who 

can treat adults with I/DD. Prior research has 

shown that increasing Medicaid reimbursement 

rates for physicians increased access to medical 

care among all adult Medicaid beneficiaries. Prior 

research has also demonstrated that increasing 

Medicaid reimbursements for dental providers 

increased receipt of 

dental care among 

children. However, 

prior research has not 

examined whether 

increased dental 

reimbursement rates increased the availability 

of dental care for adult Medicaid beneficiaries 

with I/DD.

This report is motivated by a central research 

question: should the Centers for Medicare and 

Medicaid Services (CMS) require state Medicaid 

agencies to implement Medicaid reimbursement 

and payment policies that promote access to 

dental care for adults with I/DD, and could that 

ultimately be a cost-effective option over the 

long term?

[P]oor oral health can lead to poor 

nutrition, poor sleep, and reduced 

quality of life

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 9
Because Medicaid adult dental benefits vary 

widely by state, and because there is a dearth of 

research on how the Medicaid program should 

best address oral health disparities for adults with 

I/DD, this study examines multiple state- and 

federal-level aspects of the Medicaid program. 

This research examines the relationship between 

states’ Medicaid dental benefits and the receipt 

of basic dental care among adults with I/DD, the 

relationship between state waiver programs and 

receipt of dental care, and the estimated cost 

and potential savings of implementing basic 

dental Medicaid benefits in states that do not 

currently offer it. The role of coordination 

between developmental disability (DD) agencies 

and Medicaid agencies for improving access to 

dental care is examined. Additionally, the study 

identifies promising Medicaid-funded state and 

private strategies for expanding dental care for 

adults with I/DD.

The mixed methods research approach 

included a comprehensive review of the 

literature; interviews and conversations with 

experts, through a stakeholder meeting 

and key informant 

interviews; a fiftystate and Washington, 

DC questionnaire 

administered to state 

DD agency leaders; and 

an analysis of Medicaid 

claims data provided 

through the Transformed 

Medicaid Statistical 

Information System 

(T-MSIS) by CMS.

Key findings 

include that in the twelve states that do not 

currently provide dental benefits, the total 

Report’s Areas of Examination

■ Relationship between states’ Medicaid 

dental benefits and the receipt of basic 

dental care among adults with I/DD;

■ Relationship between state waiver 

programs and receipt of dental care;

■ Estimated cost and potential savings of 

implementing basic dental Medicaid benefits 

in states that do not currently offer it;

■ Role of coordination between 

developmental disability (DD) agencies and 

Medicaid agencies for improving access to 

dental care; and

■ Promising Medicaid-funded state and 

private strategies for expanding dental care 

for adults with I/DD.

estimated cost of providing extensive dental 

benefits to adults with I/DD would be about 

$19.6 million annually, 

with state governments 

responsible for 

approximately 

$7.3 million of that 

cost. NCD estimates 

that these costs would 

be more than fully 

recovered through 

reductions in ER use 

and hospital admissions 

and reductions in the 

costs of treating several 

chronic diseases. The recovered costs would 

total approximately $27.3 million nationwide 

[I]n the twelve states that do 

not currently provide dental 

benefits, the total estimated cost 

of providing extensive dental 

benefits to adults with I/DD would 

be about $19.6 million annually,

with state governments responsible 

for approximately $7.3 million of

that cost

10 National Council on Disability
and $8.7 million for states. In other words, 

federal and state governments combined would 

see savings, or return on investment (ROI), 

of $7.7 million, and the share of that ROI that 

would return to the twelve states would total 

close to $3 million. States’ ROIs would vary, 

ranging from $15,000 in Oklahoma to as high 

as $829,000 in Maryland. Table 7 presents the 

total ROI and the states’ 

shares of the ROI.

Another key finding is 

that adults with I/DD are 

significantly more likely to 

receive basic dental care 

if they live in states with 

Medicaid dental benefits 

for the general adult population, relative to adults 

with I/DD who live in states without these dental 

benefits. Additionally, in the twelve states that 

do not provide basic Medicaid dental benefits to 

adults, seven have Medicaid waivers that expand 

dental benefits for adults 

with I/DD. Adult Medicaid 

beneficiaries with I/DD in 

these waiver states were 

50 percent more likely 

to receive basic dental 

care, as compared to 

adult Medicaid beneficiaries with I/DD in states 

without waivers.

Even in states with extensive dental benefits, 

only one-third of adult Medicaid beneficiaries 

with I/DD received basic dental care, paid for by 

Medicaid, in a year. Many barriers to receiving 

dental care for adults with I/DD remain. Among 

these barriers is the lack of dental providers who 

participate in Medicaid. Medicaid reimbursement 

rates are significantly lower than reimbursement 

rates provided by private insurers. Although 

T-MSIS data did not allow us to rigorously assess 

the impact of raising reimbursement rates on the 

participation of dental care providers in Medicaid 

(see chapter 3), prior research indicates that 

raising Medicaid reimbursement rates increases 

receipt of medical care among the general adult 

Medicaid beneficiaries. The report concludes 

with recommendations at the federal and state 

levels and suggestions 

for more research in 

key understudied areas. 

These recommendations 

include the following:

Recommendation 1:

Require state Medicaid 

programs to provide 

adult dental benefits for people with I/DD through 

federal legislative mandate. States should have 

flexibility in implementing dental benefits to 

ensure they address the needs of their I/DD 

population. Evaluations of existing state programs 

should inform the design 

and the implementation 

of these benefits.

Recommendation 2:

If a requirement for 

extensive dental benefits 

is not legislated at the 

federal level, states should add dental benefits 

to adults with I/DD to existing or new 1915(c), 

1915(i) waivers, or 1115 demonstrations. States 

can refer to waivers in other states that extend 

dental coverage to adults with I/DD as a starting 

point or template to design their own programs. 

States should consider available data about 

and evaluations of these waiver programs to 

prioritize the types of dental services and target 

populations to include in their own waivers. 

States can use available data as guidance to 

[A]dults with I/DD are significantly 

more likely to receive basic dental 

care if they live in states with 

Medicaid dental benefits for the 

general adult population

Medicaid reimbursement rates 

are significantly lower than 

reimbursement rates provided by 

private insurers

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 11
maximize access to key, cost-effective dental 

services while balancing available funding.

Recommendation 3: Other barriers to 

oral health care must be addressed that could 

be funded through state Medicaid programs. 

Potential approaches include expanding the 

number of Medicaid providers with expertise 

in treating adults with I/DD (e.g., linking higher 

reimbursement rates to education about 

treatment of adults with I/DD) and addressing 

transportation barriers. Improved preventive daily 

oral care provided by caregivers can be supported 

through state Medicaid programs (e.g., providing 

oral health training to direct support professionals 

[DSPs]). Additionally, improving education and 

support for good oral hygiene for adults with I/DD 

and coordinating services between DD agencies 

and Medicaid providers may prevent more 

serious oral health issues and increase access to 

oral health care. These issues are addressed in 

more detail in chapter 6.

Recommendation 4: Improved transparency 

about managed care organization (MCO) 

reimbursement rates is needed to identify 

cost-effective reimbursement rates for Medicaid 

dental providers who treat adults with I/DD.

States are increasingly turning to MCOs to 

provide health care and dental care with Medicaid 

funding. Most Medicaid beneficiaries receive 

health care through Medicaid MCOs. However, 

there is a lack of publicly available data about 

Medicaid reimbursement rates provided by 

Medicaid MCOs, which inhibits researchers’ and 

policymakers’ ability to assess reimbursement 

rates that would cost-effectively expand the pool 

of Medicaid dental providers who treat adults 

with I/DD.

Recommendation 5: More research is 

needed to pinpoint clear procedures and policy 

recommendations that would reduce the need for 

receipt of dental care in hospital operating rooms 

and therefore expand access to operating rooms. 

Many adults with serious I/DD receive basic 

dental care under general anesthesia in hospital 

operating rooms (ORs). Providing basic dental 

care in the OR is expensive. Further, adults with 

I/DD typically face long waiting lists to receive 

such care because of the shortage of available 

OR space for these procedures. This issue is 

described in greater detail in chapter 6.

12 National Council on Disability
Acronym Glossary

ABLE Achieving a Better Life Experience

ACA Affordable Care Act, short for the Patient Protection and Affordable Care Act signed into 

law in 2010

ADA Americans with Disabilities Act or American Dental Association, depending on context

AHRQ Agency for Healthcare Research and Quality

CDT Code on Dental Procedures and Nomenclature

CHIP Children’s Health Insurance Program

CLASS Community Living Assistance Services and Supports

CMS Centers for Medicare and Medicaid Services

CODA Commission on Dental Accreditation

COPD Chronic Obstructive Pulmonary Disease

DD Developmental Disability/Disabilities

DDD Division of Developmental Disabilities

DSP Direct Support Professional

ED Emergency Department

EPSDT Early and Periodic Screening, Diagnostic, and Treatment

FFS Fee for Service

FMAP Federal Medical Assistance Percentage

HCBS Home- and Community-Based Services

HEADs UP Healthcare Extension and Accessibility for Developmentally Disabled and Underserved 

Populations

HPI Health Policy Institute

ICD International Statistical Classification of Diseases and Related Health Problems

IDD or I/DD Intellectual/Developmental Disabilities

IQ Intellectual Quotient

KII Key Informant Interview

MC Managed Care

MCO Managed Care Organization

MEPS Medical Expenditure Panel Survey

MOA Memorandum of Agreement

MOHPD Medicaid Oral Health Policy Database

MOU Memorandum of Understanding

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 13
MSDA Medicaid, Medicare, and Children’s Health Insurance Program (CHIP) Services Dental 

Association

NADP National Association of Dental Plans

NASHP National Academy for State Health Policy

NCD National Council on Disability

NHIS National Health Interview Survey

NIDCR National Institute of Dental and Craniofacial Research

NJCDD New Jersey Council on Developmental Disabilities

NTDC Nontraumatic Dental Condition

OR Operating Room

ROI Return on Investment

SDF Silver Diamine Fluoride

SMUP Special Medically Underserved Population

T-MSIS Transformed Medicaid Statistical Information System

WIC Women, Infants, and Children program

14 National Council on Disability
Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 15
The Surgeon General’s Report on Oral Health 

in America, released twenty years ago, 

highlighted the poor oral health outcomes 

and barriers to obtaining adequate oral 

health care experienced by people with 

disabilities. This oral health disparity for

people with disabilities remains true today

16 National Council on Disability
Introduction

T

he Surgeon General’s Report on Oral Health 

in America, released twenty years ago, 

highlighted the poor oral health outcomes 

and barriers to obtaining adequate oral health care 

experienced by people with disabilities.1,2 This oral 

health disparity for people with disabilities remains 

true today. People with intellectual and 

developmental disabilities (I/DD) are particularly 

vulnerable to poor oral health outcomes.3

According to numerous studies, they have poorer 

oral hygiene, increased prevalence of periodontal 

disease, higher rates of edentulism (tooth loss), 

and increased numbers of untreated dental caries 

(cavities) than the general population.4–6

One in four adults (approximately 63 million 

adults)7 in the United States has a disability, 

Poor Oral Health Outcomes 

of Adults with I/DD

■ Poorer oral hygiene;

■ Increased prevalence of periodontal 

disease;

■ Higher rates of edentulism (tooth loss); and

■ Increased numbers of untreated 

dental caries (cavities) than the general 

population.

and approximately 7.3 million Americans 

have an I/DD.8,9 In this report, the term I/DD

is used to encompass both intellectual and 

developmental disorders that typically manifest 

before the age of eighteen years and “uniquely 

affect the trajectory of the individual’s physical, 

intellectual, and/or emotional development.”10

An intellectual disability is often identified by 

an intellectual quotient (IQ) score of below 

seventy to seventy-five.11 Conditions considered 

I/DDs include autism spectrum disorders, 

Down syndrome, fetal alcohol syndrome, and 

some forms of cerebral palsy, among others. 

While people with I/DD display a wide range 

of behaviors and functional abilities, I/DD is 

typically characterized by delays or limitations 

in development, intellectual learning skills, 

and adaptive behavior when compared to the 

general population.

Oral health is critical to overall physical and 

emotional well-being. Poor oral health is linked 

to multiple health conditions, including diabetes, 

hypertension, and other cardiovascular, 

endocrine, and respiratory diseases.12 Oral pain 

can interfere with the functions of daily living, 

including eating (which, in turn, impacts diet 

and nutrition), sleeping, and conversing. Oral 

disease and dysfunction result in low selfesteem and altered speech and affect social 

interactions, appearance, and behavior—all

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 17
of which are vitally important for people with 

I/DD.13,14 Because a significant proportion of 

people with I/DD may not be able to verbalize 

how disease impacts them, and untreated oral 

health problems may lead to or be an indicator 

for serious health issues, regular access to 

dental services and delivery of comprehensive 

oral health services are vital.

Adults with I/DD, 

however, face substantial 

barriers to obtaining the 

oral health care services 

they need.15 People 

with disabilities have a 

greater likelihood than 

those without disabilities 

of being uninsured or 

delaying or forgoing necessary health care.16

Adults with I/DD are less likely to have private 

dental insurance and are more likely to delay or 

forgo dental care.17 People with I/DD face greater 

barriers finding dentists to provide treatment, 

such as fillings, gum 

therapy, and extractions 

when necessary, than 

people with other types 

of disabilities.18 Many 

dentists do not treat 

patients with I/DD, especially adults, because 

they feel unprepared to treat them.19,20 Further, 

patients with I/DD may have to travel long 

distances to find a qualified dental provider; 

a lack of transportation is a common reason 

people with I/DD have trouble finding a physician, 

despite Medicaid providing nonemergency 

medical transportation services.21,22

The Role of Medicaid. In assessing oral 

health care and financing, for those with I/DD, 

it is crucial to examine Medicaid, the program 

under which the majority of those with I/DD 

are enrolled and receive medical care—and, 

depending on the state—dental care. Nearly 

60 percent of people with I/DD in the United 

States rely on Medicaid for health care coverage, 

including dental care.23 And while the Affordable 

Care Act and Medicaid expansions have reduced 

barriers to health care for the general population 

of adults, adults with 

disabilities face ongoing 

disparities in access to 

health care.24

Currently, Medicaid 

expends billions of 

dollars on dental 

services. In 2019, the 

United States spent 

roughly $143 billion on dental care every year, 

which represents approximately 4 percent of 

overall health care spending. About 11 percent 

of all dental expenditures were paid by the 

Centers for Medicare and Medicaid Services 

(CMS) programs, with 

9.6 percent of dental 

expenditures attributed to 

Medicaid spending.25

However, not all 

states provide Medicaid 

coverage for routine or preventive dental 

services for adults with I/DD. While states are 

required to provide dental benefits to children 

enrolled in their Medicaid state plans, adult 

dental benefits in Medicaid are optional.26,27

Currently, twelve states provide emergency-only

or no dental coverage at all for adults in their 

Medicaid programs. Some states that do not 

provide dental coverage for the general adult 

population in their Medicaid state plan have 

Medicaid 1915 home- and community-based

Oral disease and dysfunction 

result in low self-esteem and 

altered speech and affect social 

interactions, appearance, and 

behavior—all of which are vitally 

important for people with I/DD

Nearly 60 percent of people with 

I/DD in the United States rely on 

Medicaid for health care coverage, 

including dental care

18 National Council on Disability
and/or 1115 demonstration waivers that provide 

dental care to people with I/DD, but these are 

typically small programs that do not cover the 

states’ entire adult population with I/DD.28

Medicaid Reimbursement. Understanding the 

structure of Medicaid reimbursement for providers 

is important to this study’s focus on costeffective dental care for adults with I/DD. Dentists 

participating in Medicaid may be reimbursed by 

a fee-for-service (FFS) method or by Medicaid 

managed care organizations (MCOs). In the FFS 

model, dentists receive payment directly from 

state Medicaid agencies for each service they 

provide to patients. The maximum fee for each 

service is set by the state Medicaid program, 

and it is provided in a fee schedule that is publicly 

available.

When services 

are delivered through 

Medicaid MCOs under 

contract with the state 

Medicaid program, 

dentists are reimbursed 

in a different manner. In a managed care system, 

the state Medicaid program contracts with 

several MCOs to provide dental care to Medicaid 

beneficiaries. Each MCO is typically paid a 

capitated rate per enrolled member per month 

by the state Medicaid program. The MCO then 

negotiates a reimbursement rate with dentists 

who are contracted to provide care to the MCO 

plan participants. MCOs are not required to 

publicly disclose these negotiated reimbursement 

rates.29 Reimbursements may vary by provider, 

type of patients, location within a state, and plan.

Some states deliver some Medicaid services 

through FFS and other services through MCOs. 

Furthermore, some state-MCO contracts are for a 

certain region of the state or a certain population. 

Therefore, depending on the patients seen and 

their different coverages, dentists may bill the 

Medicaid MCO at the contracted rate for some 

patients and the state Medicaid program at the 

FFS rate for other patients.30

Managed care is used extensively to deliver 

Medicaid services nationwide; about 70 percent of 

all Medicaid beneficiaries currently receive health 

care through comprehensive managed care.31,32

People with disabilities are less likely to be enrolled 

in managed care than people without disabilities; 

however, states are increasingly including 

enrollees with complex needs in managed care.33

There is lack of data about the 

reimbursement rates provided by Medicaid 

MCOs, which has an impact on the available 

research about 

reimbursement rates 

for dental care.34 In 

states that provide 

preventive dental 

services, FFS rates 

are substantially lower 

than reimbursement rates provided by private 

insurance companies.35

Likely in part because of low reimbursement 

rates, 43 percent of general dentists participate 

in Medicaid or CHIP, further constraining 

the availability of dental services for people 

with I/DD who rely on Medicaid.36,37 About 

73 percent of pediatric dentists, 56 percent 

of oral surgeons, and 53 percent of public 

health dentists participate in Medicaid or CHIP. 

A lower proportion of specialty dentists, like 

those in orthodontics (40 percent), endodontics 

(28 percent), and periodontics (25 percent) 

participate in Medicaid or CHIP. Additionally, 

younger dentists are more likely to participate in 

Medicaid than older dentists.

Currently, twelve states provide 

emergency-only or no dental 

coverage at all for adults in their 

Medicaid programs

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 19
Participation Rates Medicaid or CHIP

■ 43 percent of general dentists

■ 73 percent of pediatric dentists

■ 56 percent of oral surgeons

■ 53 percent of public health dentists

■ 40 percent of orthodontists

■ 28 percent of endodontists

■ 25 percent of periodontists

■ Younger dentists more likely to participate 

than older ones

Potential Cost Savings Through Provision 

of Preventive Dental Care. Without access 

to preventive dental 

services, many Medicaid 

beneficiaries turn to the 

emergency department 

(ED) for dental care. 

There are over two million ED visits for dental 

conditions annually, which total $2.7 billion.38

Medicaid is the most common payer for ED 

visits among adults, contributing 42.2 percent of 

the payment for these 

visits.39 The remainder of 

payments are covered 

through out-of-pocket 

payments or private 

insurers.

Further, prior studies have demonstrated a link 

between good oral health and reductions in the 

cost of treating chronic health conditions, such as 

diabetes and coronary disease.40,41 Thus, states 

could experience cost savings in their Medicaid 

programs if they provide accessible preventive 

dental care to Medicaid enrollees, and adults 

with I/DD in particular.

Medicaid Coverage and Potential Cost 

Reductions. Prior research has demonstrated 

the potential for cost savings of providing more 

extensive dental benefits in Medicaid. When 

Medicaid beneficiaries received comprehensive 

dental benefits, costly ED visits and hospital 

admissions for nontraumatic dental care 

decreased.42–45 These studies, however, primarily 

focus on the general adult population, not on 

people with I/DD. The exception is a recent Texas 

study that focused on people with disabilities.46

Reimbursement Rates and Access to Dental 

Care. Prior research has shown that increasing 

physicians’ Medicaid reimbursement rates led 

to an increase in access to health care among 

adult Medicaid enrollees.47 And a study found 

that increasing Medicaid reimbursement rates 

for dentists led to an 

increase in children’s 

receipt of dental care.48

The literature review 

undertaken for this study 

did not uncover any research on the relationship 

between Medicaid reimbursement rates and 

receipt of dental care among adults with I/DD. 

Furthermore, the literature review uncovered 

no research that linked 

reimbursement rates for 

Medicaid dental providers 

to reductions in costs for 

ED visits or treatment of 

chronic disease.

People with disabilities deserve equitable 

health care access and health outcomes. There 

are ongoing opportunities for improvement 

through careful review of Medicaid coverage and 

programmatic policies that can lead to improved 

outcomes and lower costs.49

There are over two million ED visits 

for dental conditions annually, 

which total $2.7 billio

Medicaid is the most common 

payer for ED visits among adults, 

contributing 42.2 percent of the

payment for these visits

20 National Council on Disability
Chapter 1: Research Questions and Methodology

T

his report was motivated by an overarching 

question proposed by the National Council 

on Disability (NCD): “Should the Centers 

for Medicare and Medicaid Services [CMS] 

require state Medicaid agencies to implement 

Medicaid reimbursement and payment policies 

that promote access to dental care for adults 

with I/DD, and could that ultimately be a costeffective option over the long term?” To answer 

this question, a range of state- and federal-level 

Medicaid policies and programs and their effects 

need to be assessed.

To date, very little research has delved into 

the receipt of dental services among adults with 

I/DD on Medicaid.50,51 Further, no national studies 

have examined the relationship between states’ 

policies regarding provision of dental coverage 

through Medicaid or Medicaid reimbursement 

rates and receipt of dental services among adults 

with I/DD. And as described in the Introduction, 

there is no publicly available data regarding 

reimbursement rates for Medicaid dental 

providers who provide services under an MCO 

contract.

Several research questions must be 

answered regarding barriers to the receipt 

of dental services, the status of states’ 

Medicaid policy, the relationship between 

states’ Medicaid policy and receipt of dental 

services, and the relationship between Medicaid 

reimbursement rates and receipt of preventive 

and emergency dental services. Specifically, 

this report addresses the following research 

questions:

Research Questions Addressed in Report

Barriers to Dental Care for Adults with I/DD

a. What are the key barriers to receipt of dental care among adults with I/DD who receive 

Medicaid?

Status of State Medicaid Policy and Dental Services

b. How do states vary in the dental coverage they provide through Medicaid?

c. What states expand dental coverage to patients with I/DD specifically through waiver 

programs?

(continued)

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 21
Receipt of Dental Services Among Adults with I/DD

d. Among adults with I/DD who receive Medicaid, what percentage receive preventive or 

routine dental services annually? (Henceforth, both preventive and routine dental services 

are referred to as “basic dental services.”)

Impact and Costs of Medicaid Dental Benefits

e. What is the relationship between states’ Medicaid policies for dental services and the 

likelihood of receiving basic dental services among adults with I/DD? Are waiver programs 

associated with receipt of basic dental services among adults with I/DD?

f. What is the relationship between reimbursement rates for Medicaid health care providers 

and receipt of health care among Medicaid beneficiaries?

g. What is the relationship between states’ Medicaid policy and receipt of dental care in the 

emergency room (ER)?

h. What are the potential cost savings associated with providing Medicaid coverage for basic 

dental services for patients with I/DD?

Lessons Learned and Recommendations for Future Medicaid Dental Coverage

i. What can be learned, and potentially adopted as useful policy, from states that have 

innovative oral health care approaches for people with I/DD?

j. What changes to Medicaid could be recommended at the federal and state levels to 

increase access to dental health services?

k. Should reimbursement rates for Medicaid dental providers be increased to improve access?

Research Questions Addressed in Report: continued

The Surgeon General’s 2000 report on oral 

health care among people with disabilities noted 

the lack of available oral health and dental care 

data specific to the population with disabilities 

and urged for the equitable measurement, 

collection, and reporting of such information in 

the future.52 Data on oral health care for adults 

with I/DD remains difficult to obtain, even 

twenty years later. Thus, to comprehensively 

answer these research questions, NCD 

collected both qualitative and quantitative data 

from multiple sources. NCD hosted a virtual 

stakeholder meeting, conducted key informant 

interviews (KIIs), administered questionnaires 

to developmental disability (DD) agency leaders 

in all fifty states and Washington, DC, created a 

Medicaid Oral Health Policy Database (MOHPD), 

and analyzed Medicaid claims data from all 

fifty states, using CMS’ Transformed Medicaid 

Statistical Information System (T-MSIS) data. 

T-MSIS is a data and systems component of 

CMS containing utilization and claims data on 

22 National Council on Disability
Medicaid and the Children’s Health Insurance 

Program (CHIP).

Research Methods

Virtual Stakeholder Meeting

In November 2020, NCD held a virtual Zoom 

meeting with oral health practitioners, I/DD 

researchers, and advocates to introduce the 

study to key stakeholders and solicit their 

perspectives and advice on the study objectives 

and methods. Thirty-five individuals attended 

the summit, including four from NCD and five 

members of the research team, representing 

over twenty organizations. Attendees included 

self-advocates, dentists specializing in caring for 

people with I/DD, direct support professionals, 

oral health researchers, I/DD health and policy 

experts, and state Medicaid and DD agency 

administrators. The agenda and list of attendees 

are provided in Appendix A.

The research team solicited feedback on four 

topics through two rounds of small breakout 

groups, giving each attendee the opportunity 

to participate in discussions on two topics. 

These topics were (1) innovative state Medicaid 

policies, (2) analytic approaches to Medicaid 

claims data, (3) coordination between Medicaid 

and state DD agencies and innovative DD agency 

practices, and (4) coverage and reimbursement 

of oral health care for people with I/DD and other 

important considerations. Other topics discussed 

included the importance of and general barriers 

to oral health care for the adult I/DD population. 

Summit proceedings were recorded and 

transcribed, with key stakeholders cited in this 

report anonymously. Transcripts were reviewed 

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 23
for themes as they related to the research 

questions and integrated experts’ ideas on ways 

to improve access to care in this report.

Key Informant Interviews

Interviews were conducted with twenty-two 

KIIs between November 2020 and July 2021. 

Subject matter experts were identified during the 

discussions at the virtual stakeholder meeting, 

through KIIs, and via research. The goals of the 

KIIs were to (1) explore and learn about promising 

practices in oral health and state policy and 

(2) collect recommendations from key experts 

about approaches to improving oral health for 

adults with I/DD, including opportunities within 

Medicaid policy. The specific questions asked 

in the KIIs were tailored to the expertise of the 

key informant but focused on the best use of 

Medicaid funding to improve access to dental 

services and promote oral and overall health. Each 

interviewee offered insights on other research 

questions for which they had professional 

experience and knowledge. Notes from each 

interview were reviewed, themes were identified 

as they relate to research questions, and findings 

were categorized by theme. This report integrates 

the learnings from these interviews.

Questionnaire of Directors of State 

Developmental Disabilities Agencies

A questionnaire was sent to DD agency leaders 

in all fifty states and Washington, DC. The 

purpose of the questionnaire was to identify 

any unique or innovative strategies employed by 

state DD agencies in their provision of oral health 

services for adults with I/DD, including how they 

coordinate with their state’s Medicaid agency. 

The findings helped reveal current practices and 

potential recommendations for future policy that 

could benefit adults with I/DD.

The questionnaire was further reviewed 

by a state DD agency leader and leaders at 

the National Association of State Directors of 

Developmental Disabilities. The questionnaire 

was tailored to reflect the level of Medicaid oral 

health benefits (none, emergency only, limited, or 

extensive) offered by the state of the respondent, 

as classified in prior research produced by 

the National Academy for State Health Policy 

(NASHP).53 (This classification is captured within 

the aforementioned fifty-state/Washington, DC, 

MOHPD, described in the next section.) The 

questionnaire was administered on the secure 

Qualtrics online platform.

The questionnaire asked directors how they 

coordinate health care services for adults with 

I/DD with the state Medicaid program and how 

they educate people served by their agency 

about additional oral health services, if applicable, 

outside of the general dental benefits their state 

Medicaid program offers. The questionnaire 

requested a description of any additional oral 

health–related services and activities for adults 

with I/DD outside of Medicaid, if applicable. 

Additionally, the questionnaire asked about the 

inclusion of consumers or patient advocates 

in agency meetings, and their perspectives on 

the main barriers to oral health care for adults 

with I/DD in their state. Nonrespondents were 

contacted multiple times by phone and by email. 

Twenty-eight leaders of state DD agencies 

completed questionnaires. The full questionnaire 

is available in Appendix B.

Medicaid Oral Health Policy Database 

(MOHPD)

The MOHPD contains the most recently 

available information about key Medicaid policy 

dimensions related to oral health for each state’s 

Medicaid program. The data spans the years 

24 National Council on Disability
2015–2021, depending on data availability. The 

term dimension is used to describe a specific 

aspect of a state Medicaid program that is 

variable, in other words, subject to state policy 

choices and not federally mandated, or those 

that vary across states (e.g., a state’s Federal 

Medical Assistance Percentage [FMAP] rates). 

Dimensions were deemed salient for inclusion 

through KIIs, literature scan, and public availability 

of relevant information in a usable format. The 

dimensions include the level of Medicaid dental 

benefits for the general adult population as 

classified by the NASHP, state waivers that cover 

dental access specifically for people with I/DD, 

state FMAP levels, the fee schedules for key 

adult preventive oral health services, as well as 

other salient dimensions.54 The full explanation 

of dimensions and sources is provided in 

Appendix C.

The MOHPD was analyzed to answer the 

research questions, and it was merged with the 

T-MSIS data to assess the relationship between 

current state Medicaid policies and receipt of 

dental services, described in more detail next.

T-MSIS Data Analysis

NCD undertook an analysis of the T-MSIS data 

set, which contains the state Medicaid claims 

data available for all Medicaid beneficiaries, 

through CMS. NCD received a sample of over 

800,000 adults with I/DD who had a Medicaid 

claim in 2018, the most recent year of data 

available at the time of the data request. Each 

Medicaid claim in T-MSIS data is linked to a 

unique beneficiary ID to track the services 

each beneficiary received that were paid for by 

Medicaid. This data was used to assess receipt 

of dental services, location of receipt of that care, 

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 25
and the association between state Medicaid 

policies and reimbursement rates and receipt of 

preventive oral health care, utilization of EDs for 

dental care, and the cost to states of providing 

oral health care to adults with I/DD. Because 

T-MSIS data is limited to Medicaid claims that 

were paid for by the Medicaid program, receipt of 

services does not include services that were paid 

for by other insurers or were received through 

charity programs. For ease of writing, the term 

receipt of dental services is used throughout the 

remainder of the report. Reimbursement rates in 

T-MSIS reflect FFS payments only, as described 

earlier, because MCOs do not consistently report 

to state Medicaid agencies about the fees that 

are paid to providers for services rendered, and 

reimbursements provided by MCOs are not 

included in the T-MSIS data.55

Adults with I/DD in the T-MSIS were identified 

by whether they had a diagnosis code, displayed 

in Appendix D, in their 2018 Medicaid claims 

data, which is associated with an I/DD. CMS 

identified 1,134,264 beneficiaries with I/DD who 

received Medicaid in 2018. Appendix E provides 

more detail about the sample. The first column 

in Appendix E provides the sample size by state 

of adults with I/DD. The second column provides 

the total number of adults with I/DD in each 

state who receive Medicaid, as identified by 

CMS based on the diagnosis codes. The third 

column provides the percentage of adults with 

I/DD in the sample in each state. The fourth 

column provides the percentage of Medicaid 

beneficiaries in each state who had an I/DD.

A representative sample of claims records 

for adults with I/DD was randomly selected 

within each state. The analytic sample used 

in this report represents 73 percent of adults 

identified with I/DD who receive Medicaid 

across the nation in 2018. For twenty-five states 

(Alabama, Alaska, Arkansas, Colorado, Delaware, 

Hawaii, Idaho, Iowa, Kansas, Maine, Mississippi, 

Montana, Nebraska, Nevada, New Hampshire, 

New Mexico, North Dakota, Oklahoma, Oregon, 

Rhode Island, South Dakota, Utah, Vermont, West 

Virginia, Wyoming) and the District of Columbia, 

the sample includes all (100 percent) adults with 

I/DD who received Medicaid in that state.56 On 

average, based on these data, 2.5 percent of 

Medicaid beneficiaries have an I/DD diagnosis; 

however, that percentage varies widely by state, 

from a low of 1 percent in Colorado to a high of 

11 percent in Wyoming. It is possible that some 

adults with I/DD were not identified as having 

an I/DD because their I/DD diagnosis was not 

included in their Medicaid claims.

26 National Council on Disability
Chapter 2: Barriers to Oral Health Care 

for Adults with I/DD

Significant strides have been made toward 

expanding access to oral health care and 

raising awareness about and addressing 

barriers to care for people with I/DD. New 

standards and policies are being considered 

in or adopted by state and federal legislative 

bodies for dental education and dental practice. 

The federal Action for Dental Health Act 

was signed into law on December 11, 2018, 

which signified a need to improve access to 

oral health care for older adults and those 

with disabilities, among other underserved 

populations.57 This bipartisan legislation, 

which authorizes close to $32 million in 

spending annually from FY 2018 to FY 2022,58

amends the Public Health Service Act to fund 

organizations to improve oral health education 

and dental disease prevention, facilitate the 

establishment of dental homes for children and 

adults, and implement initiatives59 that reduce 

ED visits for certain dental services.60

Also in 2018, following NCD’s 

recommendation, the American Dental 

Association (ADA) revised its Code of 

Professional Conduct to state that a patient 

cannot be denied treatment based on their 

disability status alone.61 Because the ADA code 

of conduct is often used as the basis for state 

laws and regulations, this change had a ripple 

effect on dental practices.

In 2019, the Commission on Dental 

Accreditation (CODA), at the recommendation of 

NCD,62 revised its standards to require graduating 

dental students, dental hygienists, and other oral 

health professionals to be competent in managing 

the treatment of people with I/DD and other 

disabilities. The aim of this revision is to better 

prepare a workforce that is comfortable with and 

trained to provide care to those with disabilities.

Finally, in 2020, ADA’s Code on Dental 

Procedures and Nomenclature, or Current Dental 

Terminology (CDT) included codes for dental case 

management for patients with special needs.63

The CDT is a standardized set of procedural codes 

for oral health services produced by the ADA and 

used in all fifty states and Washington, DC, to 

achieve “uniformity, consistency and specificity 

in accurately documenting dental treatment.”64

These codes allow dental care providers to bill 

for the additional and important work of ensuring 

coordination of care for patients with special 

needs.

Despite these efforts to raise awareness of, 

and address, barriers to dental care for adults 

with I/DD, barriers remain. The summit attendees 

for this report, state DD agency leaders, and 

key informants all uniformly described multiple 

ongoing barriers to receiving oral health 

care. Nearly all the key informant interview 

interviewees and the summit participants agreed 

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 27
Recent Significant Disability 

Policy Developments in the 

Dental Profession

■ 2018 – Action for Dental Health Act signed 

into law.

■ 2018 – American Dental Association (ADA) 

revised its Code of Professional Conduct 

to state that a patient cannot be denied 

treatment based on their disability status 

alone.

■ 2019 – Commission on Dental Accreditation 

revised its standards to require graduating 

dental students, dental hygienists, and 

other oral health professionals to be 

competent in managing the treatment of 

people with I/DD and other disabilities.

■ 2020 – ADA’s Code on Dental Procedures 

and Nomenclature, or Current Dental 

Terminology included codes for dental case 

management for patients with special needs.

that increasing access to dental care for adults 

with I/DD was essential for improving quality 

of life for this population, especially regarding 

socialization and employment opportunities. They 

additionally confirmed many barriers described 

in the research literature that adults with I/DD 

face in accessing oral health care. Five main 

categories of systemic barriers and challenges 

emerged: lack of adult Medicaid dental coverage, 

lack of providers who accept Medicaid, lack 

of trained providers, difficulty in providing for 

specialized care needs, and transportation. (See 

Appendix F for detailed descriptions of the DD 

questionnaire responses about these barriers.)

(1) Lack of adult Medicaid dental coverage: 

The lack of standardized Medicaid coverage 

for preventive services critical to serving this 

population, like silver diamine fluoride (SDF) 

application and use of nitrous oxide, limits 

dental care for adults with I/DD across states. 

Six DD questionnaire respondents and two key 

informants mentioned this as a barrier.

(2) Lack of providers who accept Medicaid: 

There is a lack of dental providers who serve 

Medicaid patients, due not only to the lack 

of training, but likely compounded by low 

Medicaid reimbursement rates. Medicaid FFS 

reimbursement rates are lower than those for 

private insurers.65 As described in chapter 1, one 

study indicated that increasing the Medicaid 

reimbursement rates increased receipt of 

preventive dental care for children who are 

Medicaid beneficiaries.66 Two prior studies, 

using rigorous quasi-experimental designs, 

demonstrated increases in access to medical 

care associated with higher reimbursement rates. 

The first of these studies demonstrated that 

increased Medicaid reimbursement, through both 

FFS and states’ capitation rates67 to managed 

care organizations, which were required under 

the Patient Protection and Affordable Care Act 

mandates, for certain nondental health services, 

led to decreases in patients’ reports of physicians 

not accepting Medicaid beneficiaries, increases 

in utilization of care, and improvements in 

self-reported health.68 The second study found 

that when this mandated rate increase expired 

in 2016, primary care appointment availability 

decreased for new Medicaid patients in the 

states that allowed their rates to decrease.69

While summit attendees cited low 

Medicaid reimbursement as a barrier to care, 

several attendees and key informants who 

28 National Council on Disability
were interviewed mentioned that higher 

reimbursement does not necessarily lead 

to more dentists being willing to serve the 

I/DD population. Demonstrating this, nine 

DD questionnaire respondents cited a lack of 

providers who take Medicaid, while only four 

mentioned low reimbursement rates as barriers 

to care.

(3) Training and education: There is a lack 

of provider training and education and stigma 

associated with serving the I/DD population. 

Oral health care providers, particularly those who 

graduated before CODA revised its standards 

to include training on the management of the 

treatment of patients with disabilities, may 

be unaware of the unique needs of the I/DD 

population. They can find it difficult to spend 

the extra time and patience needed to care for 

patients with I/DD. Thirteen respondents to the 

DD questionnaire and three key informants cited 

a lack of trained providers and/or stigma about 

treating people with disabilities as a barrier to oral 

health care.

(4) Difficulties in accessing operating rooms 

(ORs) in hospitals for oral health procedures 

and providing specialized care: Adults with 

serious I/DDs may require general anesthesia 

to receive preventive oral health care because 

Barriers to Oral Health for Adults 

with I/DD

■ Lack of adult Medicaid dental coverage

■ Lack of providers who accept Medicaid

■ Lack of trained providers

■ Difficulty in providing for specialized care 

needs

■ Transportation

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 29
they cannot tolerate dental care otherwise. 

Thus, they must receive oral health care in a 

hospital setting or in outpatient dental surgery 

settings. Ten DD respondents mentioned an 

inability to provide specialized care as a barrier 

to oral health access. Research on access to oral 

health care for Medicaid enrollees with I/DD in 

California indicates that lack of access to general 

anesthesia for the dental care of patients with 

I/DD results from a lack of facilities that offer 

this service and accept Medicaid and hospitals’ 

prioritization of other surgeries over dental 

services in the OR.70 Chapter 6 of this report 

addresses this issue in greater detail.

(5) Transportation: Even when a patient can 

locate a dentist who is willing to treat them, they 

may face barriers arranging transportation to the 

appointment or must drive long distances for 

dental care. Two DD questionnaire respondents 

cited transportation as a barrier to care, while 

four key informants mentioned the lack of 

providers and transportation as a barrier.

30 National Council on Disability
Chapter 3: The Role of Medicaid in Providing Dental 

Services for Adults with I/DD

Medicaid is a state-administered program 

that is supported by both state and 

federal funding. Each state agency 

has the authority to determine the structure of 

the program that best aligns with the needs and 

resources of its state population, as long as the 

state program complies with federal statutes and 

regulations. Although states are required to make 

dental care available to children and adolescents 

under age twenty-one years enrolled in Medicaid 

via the Early and Periodic Screening, Diagnostic, 

and Treatment (EPSDT) 

benefit, there is not a 

comparable mandate for 

adult dental benefits in 

Medicaid. As such, there 

is significant variation 

in Medicaid programs 

from state to state in 

terms of both eligibility 

criteria and the covered services for adult dental 

benefits, which range from being nonexistent 

to extensive.71 Among the general population 

of adults, those who live in states without an 

adult dental benefit in Medicaid are more likely 

to report that life is often “less satisfying due 

to the condition of mouth and teeth.”72 Studies 

have shown that access to adult Medicaid dental 

benefits increases the probability of a dental 

visit within twelve months, underscoring the 

importance of access to dental care through 

Medicaid.73,74

The NASHP categorized states’ adult 

dental benefits in Medicaid in July 2021 

as no coverage, emergency only, limited, 

and extensive.75 Twenty-three states and 

Washington, DC, provide extensive dental 

benefits for adults, with spending caps of 

at least $1,000 per person per year and 

coverage for diagnostic, preventive, and major 

restorative dental services. Fourteen states 

provide limited adult 

dental benefits with 

lower annual spending 

caps and coverage for 

diagnostic, preventive, 

and minor diagnostic 

dental services. Nine 

cover only emergency 

dental care for relief of 

pain or infection in emergency situations. Three 

states do not offer any adult dental services 

(see Table 1). Variation in state Medicaid policy 

provides opportunities for studying the impact 

of these variations on receipt of dental care (see 

Appendix C and MOHPD). This classification 

system is used for this study and included in the 

MOHPD created for this study (see chapter 1).

Each state also has a distinct DDs services 

agency serving adults with DDs in the state. 

Among the general population of 

adults, those who live in states 

without an adult dental benefit in 

Medicaid are more likely to report 

that life is often “less satisfying due 

to the condition of mouth and teeth.

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 31
Table 1: Number of States’ Medicaid 

Programs Offering Different Levels of 

Dental Benefits for the General Adult 

Population, 202176

Level of Dental Benefits Number of States

No coverage 3

Emergency only 9

Limited 15

Extensive 24

Many state Medicaid agencies, in conjunction 

with state DD agencies, administer 1915(c) 

home- and community-based services Medicaid 

waivers, some of which include provisions 

for dental care for adults with intellectual and 

developmental disabilities (I/DD; see Appendix C 

and MOHPD). The 1915(c) waivers are dependent 

on funding, serving a limited number of people 

every year, and include specific target groups. 

Waiver enrollees must have met eligibility 

requirements for 1915(c) waivers, which means 

that not all adults with I/DD on Medicaid have 

access to dental benefits under these waivers. 

Additionally, some states have implemented 

section 1115 demonstrations that include an adult 

dental benefit.

Table 2 displays the states with and without 

waivers, in 2018, among states that provide no 

or emergency-only dental coverage through 

Medicaid. Both 1915 waivers and 1115 waivers 

are included in the table. Data from 2018 is 

displayed to align with the year of T-MSIS data 

used for this study. Seven of these states 

provided dental coverage for adults with I/DD 

through 1915 and/or 1115 waivers. People with 

I/DD in the states with Medicaid waivers (Table 2) 

Table 2: States with 1915 Waiver or 1115 Demonstration Coverage of Dental 

Benefits for Adults with I/DD, in 2018, Among States with No or EmergencyOnly Medicaid Dental Benefits for the General Adult Population77

State Level of Dental Coverage for 

General Adult Population

Waiver Coverage of Dental Benefits 

for Adults with I/DD

Alabama No coverage N

Arizona Emergency only Y

Florida Emergency only Y

Georgia Emergency only Y

Hawaii Emergency only N

Maryland No coverage N

Nevada Emergency only N

New Hampshire Emergency only N

Oklahoma Emergency only Y

Tennessee No coverage Y

Texas Emergency only Y

Utah Emergency only Y

32 National Council on Disability
may be able to access Medicaid-covered dental 

care (if they fulfill waiver requirements and are 

enrolled in the waiver program), even though 

the Medicaid state plan does not cover basic 

dental care.

Adding further complexity to understanding 

state Medicaid programs, states set the 

reimbursement rates for medical and dental 

services for benefits under an FFS payment 

system, as described in the Introduction. 

According to the 2019 questionnaires conducted 

by Medicaid, Medicare, CHIP Services Dental 

Association, twenty-seven states delivered 

Medicaid dental 

services through FFS, 

and twenty-four states 

and Washington, DC, 

delivered Medicaid 

dental services through 

both FFS and managed 

care systems. These 

delivery models characterize adults’ and children’s 

access to dental services under Medicaid.78

Under FFS, states directly pay providers for each 

covered service, while in managed care systems, 

the state pays a capitated fee per person 

enrolled in the plan to the MCO that delivers 

covered services. In a mixed system, states 

may contract with MCOs to deliver benefits 

to a certain population or provide specific 

services.79 In key informant interviews, several 

stakeholders noted that states are moving 

toward more managed care delivery systems for 

their Medicaid programs. Close to 70 percent 

of Medicaid enrollees nationwide are enrolled 

in managed care programs,80 and 44 percent 

of Medicaid beneficiaries with disabilities were 

enrolled in managed care limited-benefit plans 

in 2018, which include dental benefits in many 

states.81 Reimbursement rates under managed 

care systems may differ from Medicaid FFS 

fee schedules. Reimbursement rates under 

managed care plans are not required to be 

publicly available.82

State fee schedules are the Medicaid FFS 

maximum reimbursement rates to health care 

providers or suppliers. 

These are made publicly 

available by Medicaid 

agencies in each 

state. One 2016 study 

from the American 

Dental Association 

compared Medicaid 

FFS reimbursement rates for child and adult 

dental care services across states, additionally 

comparing them to private insurance 

reimbursement rates and the rates providers 

charge for these same services. The study 

found considerable variation in FFS rates for 

dental care across states and, overall, found 

Medicaid FFS reimbursement rates to be low. 

On average, for adult dental services, FFS rates 

are only 37 percent of those charged by dentists 

and 46 percent of private dental insurance 

reimbursement.83

On average, for adult dental 

services, FFS rates are only 

37 percent of those charged by 

dentists and 46 percent of private 

dental insurance reimbursement

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 33
34 National Council on Disability
Chapter 4: Analysis of State Medicaid Dental 

Coverage, Medicaid Reimbursement Rates, and 

Receipt of Oral Health Care Among Adults with I/DD

T

his chapter presents the results of the 

T-MSIS data analysis. NCD merged the 

Medicaid Oral Health Policy Database 

created for this study (see chapter 1) with the 

T-MSIS Medicaid claims data by the state of 

residence of the Medicaid beneficiary. The 

analysis was restricted to adults with I/DD, as 

identified by an I/DD diagnosis in the T-MSIS data. 

As noted in chapter 1, the T-MSIS analysis uses 

data from 2018, the most recent year available at 

the time of the T-MSIS data request.

NCD used three key pieces of data in the 

analysis: (1) Code on Dental Procedures and 

Nomenclature (CDT) codes to identify the dental 

care services that the beneficiary received in 

2018; (2) an indicator of whether dental services 

were received in the emergency department 

(ED); and (3) International Statistical Classification 

of Diseases and Related Health Problems, Tenth 

Revision (ICD-10) codes to identify diagnoses. 

The first two variables are available for all medical 

or dental services that the beneficiary received in 

2018. The ICD-10 codes are available for services 

provided in hospitals, EDs, and ambulatory/urgent 

care centers. NCD presents state- and nationallevel analyses to address the research questions. 

The state data was weighted, based on the 

sampling design, to estimate an average across 

the nation. NCD then identified relationships 

between variables that are statistically significant.

Throughout the report, the shorthand 

“receipt of dental services” is used to mean 

receipt of dental services that were paid for 

by Medicaid. It is important to note that while 

the T-MSIS data includes only services that 

are paid by Medicaid, a Medicaid beneficiary 

may receive services that are not included 

in the T-MSIS data. The T-MSIS data does 

not include noncovered services or denied 

claims; therefore, it is possible for a Medicaid 

beneficiary to receive services through a 

federally qualified health clinic that did not 

submit a claim for noncovered services. 

Furthermore, if a Medicaid beneficiary received 

services through a charity (e.g., a Special 

Olympics dental clinic) or received services 

that were paid out-of-pocket or through another 

insurance plan, these services would not be 

included in the T-MSIS data. The estimates in 

this report may not include all dental services 

that an adult with I/DD received in 2018.

This chapter presents the following analyses 

for adults with I/DD: (1) the percentage of adults 

with I/DD who receive basic dental care by state; 

(2) the relationship between state Medicaid 

coverage of dental services and receipt of basic 

dental care; (3) the relationship between state 

Medicaid waivers that cover dental services 

and receipt of dental care in the ED; and (4) the 

potential return on investment (ROI) of expanding 

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 35
dental care to adults with I/DD in states that do 

not currently do so, including estimates of the 

cost of expanding coverage relative to potential 

savings as a consequence of decreased ED use 

and reductions in cost of treatment of chronic 

diseases.

Receipt of Basic Oral Health Care Among 

Adults with I/DD. First, NCD examined the 

percentage of adults with I/DD who received 

basic oral health services by state in 2018. NCD 

then identified basic oral 

health services by CDT 

codes.84 Basic dental 

services, as defined 

by CDT codes, were 

provided in four settings: 

ambulatory/urgent care, 

inpatient hospital setting, ED, or “other setting.” 

For this analysis, the focus was on basic dental 

services provided in “other settings,” which 

were likely dentists’ offices, capturing the type 

of dental care that is 

the focus of this report. 

Adults with I/DD may 

also receive basic dental 

care in an inpatient 

hospital or ambulatory 

care setting; however, 

some inpatient care may reflect admittance 

to the hospital after an ED visit for an oral 

health emergency, and some care provided in 

ambulatory or urgent care settings may reflect 

care resulting from an emergency. Thus, NCD 

focused on basic care offered in “other settings” 

in this section.85

These percentages ranged widely by state, 

with a low of 5 percent in Utah and a high of 

71 percent in the District of Columbia (Table 3). 

This national average of 24 percent matches prior 

estimates of use of dental benefits by Medicaid 

beneficiaries who live in states with extensive 

benefits.86

Number of Adults with I/DD by State Policy. 

Table 4 shows the number of adults with I/DD 

who live in states by the state Medicaid dental 

policy. NCD used the categorization of dental 

policies created by the NASHP described in 

chapter 3. Approximately three-quarters of

adults with I/DD who receive Medicaid live 

in states with either 

extensive or limited 

adult dental benefits. 

However, 23 percent 

(over 250,000 adults 

with I/DD who receive 

Medicaid) live in states 

with either emergency-only or no coverage. In 

Tables 5 to 7, NCD calculated the cost and ROI 

of providing basic dental care for adults with 

I/DD in those states.

State Medicaid 

Policy and Receipt of 

Preventive Care. NCD 

examined the likelihood 

of receiving basic dental 

care among adults with 

I/DD by the Medicaid 

policy for basic dental care of the state in 

2018 in which they lived. The categorization 

of dental policies in 2018 was used to match 

the T-MSIS data. As shown in Figure 1, NCD 

found a strong association between states’ 

Medicaid policies and receipt of dental care. 

Adults with I/DD were over three times as 

likely to receive basic dental care if they lived 

in a state with extensive or limited Medicaid 

dental coverage, relative to states with no 

coverage, and 1.5 times as likely to receive 

On average, 24 percent of adult 

Medicaid beneficiaries with I/DD 

nationwide received basic dental 

services during 2018

23 percent (over 250,000 adults with 

I/DD who receive Medicaid) live in 

states with either emergency-only 

or no coverage

36 National Council on Disability
Table 3: Percentage of Adults with I/DD Who Received Basic Dental Care, 

by State, 201887

State Percentage (%)

Alabama 5

Alaska 49

Arizona 25

Arkansas 27

California 27

Colorado 44

Connecticut 48

Delaware 8

District of Columbia 71

Florida 27

Georgia 17

Hawaii 8

Idaho 48

Illinois 25

Indiana 55

Iowa 56

Kansas 36

Kentucky 40

Louisiana 8

Maine 17

Maryland 14

Massachusetts 57

Michigan 30

Minnesota 54

Mississippi 21

Missouri 29

State Percentage (%)

Montana 56

Nebraska 59

Nevada 22

New Hampshire 14

New Jersey 48

New Mexico 53

New York 22

North Carolina 48

North Dakota 64

Ohio 38

Oklahoma 33

Oregon 48

Pennsylvania 36

Rhode Island 48

South Carolina 42

South Dakota 71

Tennessee 26

Texas 21

Utah 5

Vermont 56

Virginia 6

Washington 43

West Virginia 14

Wisconsin 41

Wyoming 40

National average (weighted) 24

basic dental care, relative to states with 

emergency-only coverage. This relationship was 

statistically significant. Furthermore, Figure 2 

demonstrates that the higher levels of receipt 

of basic dental care in the emergency-only

states, relative to the no-coverage states, 

are likely a consequence of waiver programs 

in the emergency-only states that provide 

dental services for some people with I/DD in 

those states.

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 37
Table 4: Number and Percentage of Adults with I/DD by State Medicaid Benefits 

for the General Adult Population, 201888,89

Population Percentage (%)

Extensive 567,692 50

Limited 305,625 27

Emergency only 222,857 20

No coverage 38,090 3

Total 1,134,264 100

Table 5: Estimated Total Cost and States’ Share of Total Cost to Provide Extensive 

Dental Coverage to Adults with I/DD, in States with Emergency or No Coverage

State Total Cost Cost to State

Alabama $2,290,420 $628,033

Arizona $1,428,287 $428,343

Florida $1,632,161 $620,874

Georgia $2,549,957 $840,721

Hawaii $579,963 $272,466

Maryland $2,574,349 $1,287,175

Nevada $616,038 $226,086

New Hampshire $821,700 $410,850

Oklahoma $162,916 $52,150

Tennessee $1,252,377 $424,556

Texas $4,716,186 $1,801,111

Utah $969,234 $314,807

Total $19,593,588 $7,307,172

The analysis shows a clear trend. The more 

extensive the dental coverage provided by 

the state Medicaid program, the greater the 

likelihood that adults with I/DD would receive 

preventive dental services paid for by Medicaid. 

Chapter 5 describes the implications of these 

results for Medicaid policy reform.

It is important to note, however, that even in 

states with extensive dental benefits, two-thirds 

of adults with I/DD and who have Medicaid still 

do not receive basic dental care, paid for by 

Medicaid, as shown in Figure 1. This likely reflects 

the many barriers to dental care faced by people 

with I/DD, as described in chapter 2.

38 National Council on Disability
Table 6: Estimated Total Cost Reductions and States’ Share of Total Savings 

Resulting from Providing Basic Dental Coverage to Adults with I/DD, in States 

with Emergency-Only or No Coverage

State Total Cost Savings Cost Savings to State

Alabama $3,475,205 $952,901

Arizona $1,619,792 $485,776

Florida $2,130,424 $810,413

Georgia $3,735,944 $1,231,741

Hawaii $649,142 $304,967

Maryland $4,233,956 $2,116,978

Nevada $700,984 $350,492

New Hampshire $770,919 $282,927

Oklahoma $210,330 $67,327

Tennessee $1,626,656 $551,436

Texas $6,511,649 $2,486,799

Utah $1,615,682 $524,773

Total $27,280,683 $10,166,530

Table 7: Total Return on Investment and Return on Investment by State 

of Providing Basic Dental Coverage in States that Currently Have No or 

Emergency-Only Medicaid Dental Coverage for Adults with I/DD

State Total Return on Investment

(Cost – Cost Reduction) Share of ROI for States

Alabama $1,184,785 $324,868

Arizona $191,505 $57,432

Florida $498,263 $189,539

Georgia $1,185,988 $391,020

Hawaii $69,180 $32,501

Maryland $1,659,606 $829,803

Nevada ($120,716) ($60,358)

New Hampshire $154,881 $56,841

Oklahoma $47,414 $15,177

Tennessee $374,279 $126,881

Texas $1,795,463 $685,687

Utah $646,448 $209,966

Total $7,687,095 $2,859,358

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 39
Figure 1. Percentage of Adults with I/DD Receiving Basic Dental Care, by State

Policy Context, 201890

Figure 2. Percentage of Adults with I/DD Receiving Basic Dental Care in States

with No or Emergency-Only Medicaid Dental Care, by Whether the State Has a 

Waiver Program91

40 National Council on Disability
1915 Waivers and 1115 Demonstrations and 

Receipt of Preventive Services. Adults with 

I/DD who live in states with 1915 waivers or 

1115 demonstrations that cover dental care for 

adults with I/DD, as shown in Table 2, were 

47 percent more likely to receive basic dental 

services (Figure 2) relative to states without 

waivers. This analysis 

was limited to the states 

that either have no 

coverage or emergencyonly coverage, in 2018, 

because adults in these 

states do not otherwise 

have access to Medicaid 

coverage for basic dental services, except 

through waivers. Some of the waivers in these 

states provide extensive coverage for dental 

services; however, they typically do not cover the 

entire population of adults with I/DD in the state. 

This likely explains why waivers are associated 

with a 47 percent 

increase in receipt 

of dental services, 

compared to the larger 

increase in receipt of 

basic dental services that 

more expansive Medicaid 

benefits provide 

(Figure 1).

Six of the seven 

states with waivers 

provide emergencyonly dental coverage for the general adult 

population. Only one of the seven states with 

waivers provides no dental coverage for the 

general adult population (see Appendix C for 

more information about the methodological 

approach to reviewing and classifying state 

1915 waivers and 1115 demonstrations). Thus, 

this analysis suggests that Medicaid waivers 

for dental services for the I/DD population are 

associated with the higher receipt of basic 

dental care among adults with I/DD in states 

with emergency-only dental coverage (Figure 1), 

relative to adults in states with no dental 

coverage.

Reimbursement Rates 

and Receipt of Dental 

Care. As described in 

the Introduction, prior 

research has shown 

that increased Medicaid 

rates led to increases 

in receipt of dental care among child Medicaid 

beneficiaries and medical care among the general 

adult population of Medicaid beneficiaries.92

These studies examined the effects of policies 

that raised Medicaid rates on changes in receipt 

of health care among Medicaid beneficiaries.

Because of data 

limitations, the T-MSIS 

data could not be used 

to measure the effects 

of reimbursement rates 

on the receipt of dental 

care among the adult 

I/DD population. The 

T-MSIS data does not 

include payment for 

services provided by 

Medicaid MCOs. As 

mentioned in the Introduction, MCOs are not 

required to make their reimbursement rates 

public.93 The MOHPD provides fee schedules 

for states with Medicaid dental benefits. As 

described in the Introduction, fee schedules are 

the maximum payment a Medicaid provider can 

[E]ven in states with extensive 

dental benefits, two-thirds of adults 

with I/DD and who have Medicaid 

still do not receive basic dental care, 

paid for by Medicaid 

Medicaid waivers for dental 

services for the I/DD population are 

associated with the higher receipt 

of basic dental care among adults 

with I/DD in states with emergencyonly dental coverage ..., relati

to adults in states with no dental 

coverage

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 41
receive through FFS payment from the state 

Medicaid agency. The MOHPD also provides, 

when available, separate fee schedules or 

increased rates for dental services through 

waiver programs, for people with I/DD, relative 

to the general adult 

population. There is no 

systematic data source 

available for these 

separate fee schedules 

for waiver programs or 

the I/DD population. 

Dental fee schedules 

for the general adult 

population are not available for states with no 

Medicaid adult dental coverage.

Receipt of Dental Care in the ED. NCD examined 

the percentage of dental care that was received 

in the ED by state Medicaid policy environment 

(Figure 3). The sample was restricted to adults with 

I/DD who received some dental care in 2018, and 

receipt of dental care in the ED was defined as care 

for nontraumatic dental conditions provided in the 

ED, based on ICD-10 codes.94

NCD found that in 

states that provide 

no dental coverage in 

their Medicaid plans, 

a significantly higher 

proportion of dental 

care was provided in 

the ED. Thus, although 

these states provide 

less dental care overall, more of that dental care 

takes place in a more costly environment of 

the ED.

Potential Cost. In this analysis, NCD 

first estimated the cost to federal and state 

NCD found that in states that 

provide no dental coverage in their 

Medicaid plans, a significantly 

higher proportion of dental care 

was provided in the [emergency 

department]

Figure 3. Percentage of Adults with I/DD Who Received Dental Services in the

ED, Among Adults with I/DD who Received Dental Services, by State Policy 

Context, 201895

42 National Council on Disability
governments of expanding Medicaid to include 

basic dental services for adults with I/DD in 

states that do not currently do so. NCD then 

analyzed the expected savings and the ROI to 

federal and state governments of providing this 

dental coverage to adults with I/DD.

To estimate the costs of providing dental 

benefits to adults with I/DD living in states that 

currently provide no or emergency-only dental 

benefits, NCD multiplied the per person/per year 

cost of dental care by the estimated increase 

in the number of adults with I/DD who would 

access basic dental care, if states changed their 

Medicaid policy. More specifically, the annual 

additional costs to states were derived using the 

following equation:

Annual additional costs to states = Ann est cost/

person * [EN – CN] * (1–FMAP)

where

EN is the expected number of adults in a 

state that would receive basic dental care under 

a more comprehensive dental plan = [Number of 

adults with I/DD in a state] * 35 percent96

CN is the current number of adults who 

receive basic dental care in a state97

Ann est cost/person is the estimated annual 

cost of providing dental care/per person/per 

year under a plan that covers basic dental 

care. This estimate comes from the cost of 

providing basic dental benefits specifically for 

adults with developmental disabilities through 

a recent state waiver program that covers basic 

dental services.98 NCD adjusted this figure for 

annual inflation and state variation in the cost of 

providing dental services.99

FMAP is the Federal Medical Assistance 

Percentage, the percentage of Medicaid costs 

that the Federal Government pays each state; 

1-FMAP is the percentage of Medicaid costs 

paid by the state. These rates are provided in 

the MOHPD created for this project and vary 

by state.

Table 5 provides an estimate of the expected 

cost to states of providing extensive dental 

benefits (a term we use interchangeably with 

“basic dental coverage”) to adults with I/DD in 

states that currently provide no or emergencyonly dental care. The total cost is estimated to be 

$19.6 million. The total cost to states would be 

$7.3 million. The cost to the Federal Government 

would be about $12.3 million [Total Cost – State 

Share of Cost].

Potential Cost Reduction. Receiving 

preventive dental care can lead to cost 

reductions through reduced use of the ED, and 

resulting hospital admittance, for nontraumatic 

dental injuries. Improved oral health is 

also associated with reductions in chronic 

conditions and lower costs of treating chronic 

conditions. The Centers for Disease Control 

and Prevention’s 2019 umbrella review,100

which is a comprehensive assessment of 

rigorous scientific studies,101 identified diabetes, 

cardiovascular disease, cerebrovascular disease, 

chronic obstructive pulmonary disorder (COPD), 

dementia, psoriasis, and lung cancer as health 

conditions most closely associated with 

preventable oral health conditions. Furthermore, 

an analysis by the National Association of Dental 

Plans (NADP) indicates that medical costs 

for Medicaid beneficiaries who have access 

to dental benefits were lower for ten chronic 

conditions (coronary heart disease, diabetes, 

high blood pressure, heart attack, stroke, angina, 

other heart disease, cancer, high cholesterol, 

and asthma).102

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 43
Health Conditions Most Closely 

Associated with Preventable Oral 

Health Conditions

■ Diabetes

■ Cardiovascular disease

■ Cerebrovascular disease

■ Chronic obstructive pulmonary disorder 

(COPD)

■ Dementia

■ Psoriasis

■ Lung cancer

NCD estimate the cost reductions based on 

avoidance of ED and hospital use and reductions 

in treatment costs for people with these chronic 

conditions as follows:

Annual cost reductions for states = Ann est cost/

person * est. percent of people to experience 

event/chronic condition * [EN – CN] * (1-FMAP)

The number of adults with I/DD who 

experience the chronic conditions by state 

was derived from analysis of T-MSIS data, 

where possible, and from national estimates, 

otherwise.103 The estimated percentage of 

people who avoided hospital admission for 

nontraumatic dental care was obtained from an 

analysis completed by the Health Policy Institute, 

based on Texas Medicaid data.104 The estimated 

percentage of people who would avoid an ED 

visit for a nontraumatic dental issue was obtained 

through analysis of T-MSIS data.105 And the 

reduced costs of treatment for chronic conditions 

were derived from estimates produced by the 

NADP, using data from the Medical Expenditure 

Panel Survey (MEPS).106 These figures were 

adjusted for inflation.

The analysis demonstrated that the total 

cost reduction of implementing a dental benefit 

is $27.3 million. The cost reduction to states is 

a combined $10.2 million. The savings to the 

Federal Government is an estimated $17.1 million. 

These estimates are likely conservative because, 

for many of the estimates of the frequency of 

chronic conditions, NCD drew from the NADP’s 

MEPS analysis for the general adult population. 

People with disabilities tend to experience higher 

levels of chronic conditions than do people 

without disabilities.

Return on Investment. To calculate the ROI, 

NCD subtracted the cost of providing dental 

coverage from the savings that would result 

from providing dental coverage (Table 7). The 

estimates demonstrate that the total ROI would 

be $7.7 million. States’ share of the ROI would be 

close to $3 million. States’ ROIs vary substantially. 

For example, Oklahoma would have an ROI of 

about $15,000, while Maryland would have an 

ROI of about $830,000. In only Nevada would 

the cost of implementing a dental benefit exceed 

savings by a minimal amount. Nevada is estimated 

to spend only an additional $60,000 from 

implementing a Medicaid dental benefit for adults 

with I/DD, in exchange for having the preventive 

dental care of its adult citizens with I/DD covered.

Unmeasured Return on Investment. It is 

important to note that the conversations with 

key informants and stakeholders encouraged an 

expansion of the definition of ROI. Outcomes 

that are not easily quantifiable should also be 

considered an ROI. For example, improved oral 

health would decrease chronic pain, improve 

44 National Council on Disability
quality of life, and increase self-confidence to 

socialize and seek employment.

Summary of T-MSIS Analysis Results. In 

summary, the key findings from the T-MSIS 

analysis include the following: (1) covering 

basic dental care in Medicaid will likely lead to 

significantly greater receipt of dental care among 

adults with I/DD; (2) Medicaid waivers that cover 

basic dental care for 

adults with I/DD are also 

likely to increase receipt 

of basic dental care, but 

not to the same extent as 

providing a general adult 

Medicaid dental benefit; 

and (3) even with dental 

coverage in Medicaid, 

approximately two-thirds 

of adults with I/DD who receive Medicaid did not 

receive basic dental care, paid for by Medicaid. 

This suggests significant barriers to dental care 

beyond states’ Medicaid coverage that must be 

addressed.

Furthermore and vitally, regarding the 

cost, savings, and ROI for providing basic 

dental coverage, (1) the ROI of providing basic 

Medicaid dental coverage for adults with I/DD 

for federal and state governments is estimated 

to total $7.7 million, and states’ share of that 

is estimated to be close to $3 million; (2) the 

twelve states that currently do not provide 

extensive dental coverage would likely spend 

between $52,000 (in Oklahoma) and $1.8 million 

(in Texas) to provide such coverage to the 

adult I/DD population; 

and (3) eleven of the 

twelve states that do 

not currently provide 

coverage of basic dental 

services in Medicaid 

would likely recoup all of 

these costs through the 

reduced cost of treating 

people with chronic 

conditions and reductions in ED use and hospital 

stays for nontraumatic dental care.

It is important to note that the cost to quality 

of life of not having access to basic dental care is 

not counted in this ROI model. Basic dental care 

is essential for better life quality, and adults with 

I/DD are entitled to equitable supports to have a 

high quality of life.

[T]he ROI of providing basic 

Medicaid dental coverage for adults 

with I/DD for federal and state 

governments is estimated to total 

$7.7 million, and states’ share of that

is estimated to be close to $3 million

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 45
46 National Council on Disability
Chapter 5: Opportunities and Recommendations 

for Change Within Medicaid

T

his section presents findings from the KII, 

stakeholder group, and DD questionnaire 

responses about the best use of Medicaid 

funding to reduce preventable oral health issues; 

recent state changes in Medicaid oral health 

policy, including pilot, promising, and unique 

initiatives; and promising practices of state 

DD agencies regarding oral health care for the 

adults they serve. NCD also assesses the extent 

to which the expert, stakeholder, and state 

administrator opinions align with the quantitative 

data analysis.

Opportunities in Medicaid

Providing Comprehensive Coverage of Dental 

Services in Medicaid. About one in four adults 

with I/DD who rely on Medicaid live in states 

that do not cover basic dental services in their 

Medicaid programs (Table 4). Key informants and 

stakeholders identified the lack of comprehensive 

dental benefits in all states as a major barrier 

to accessing dental care for adults with I/DD. 

Similarly, T-MSIS analysis showed a strong and 

clear association between states’ Medicaid policy 

and the likelihood that an adult would receive 

basic dental care. Adults with I/DD living in states 

with coverage of dental care for the general 

adult population were substantially more likely to 

receive basic dental services, relative to adults 

with I/DD living in states with no dental care 

(Figure 1).

Federal Legislation. Comprehensive dental 

care could be mandated through legislation at the 

federal level for the adult Medicaid population, 

as was done for Medicaid-enrolled children in 

1967 through the Medicaid EPSDT amendments, 

enacted as part of amendments to the Social 

Security Act.107 Federal legislation would ensure 

that adult Medicaid beneficiaries with I/DD have 

ongoing access to dental coverage, regardless of 

whether states prioritize dental benefits for the 

general adult population in Medicaid in the future.

State Policy Change. Alternatively, the twelve 

states that do not currently require basic dental 

care could do so at the state level. Louisiana 

provides an example of a potential state pathway 

to coverage of dental services. Governor John 

Bel Edwards signed House Bill 172 into law, 

which extends comprehensive coverage of dental 

care for adults twenty-one years or older with 

I/DD who are enrolled in any Medicaid waiver 

program starting August 1, 2021. The coverage 

includes diagnostic, preventive, restorative, 

endodontic, periodontal, orthodontic, and 

prosthodontic services, oral and maxillofacial 

surgery, and emergency care.108 Other states can 

follow this pathway by granting waiver enrollees 

with I/DD dental coverage through their state 

legislatures.

State Waivers to Provide Dental Benefits.

States have the option to provide dental benefits 

through 1915(c), 1115 demonstrations, and 1915(i) 

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 47
waivers. The MOHPD shows the states that have 

implemented 1915(c) home- and communitybased services (HCBS) waivers and 1115 

demonstrations to expand oral health benefits for 

the I/DD population. Additionally, twelve states 

and Washington, DC, have implemented 1915(i) 

state plan HCBS waivers to offer HCBS through 

the Medicaid state plan instead of through a 

waiver program. The 1915(i) waivers can target 

HCBS benefits to certain populations, increase 

financial eligibility for 1915(i) programs, establish 

a new Medicaid eligibility group for people 

eligible for state plan HCBS, and define the HCBS 

included in the benefit.109,110 These waiver options 

offer an opportunity for Medicaid innovation 

and enhanced services 

for oral health for all or 

subsets of Medicaid 

enrollees. States can 

add dental services to 

existing 1915(c) or 1915(i) 

waivers or implement 

new waivers to provide 

increased coverage for oral health and expand 

services to specific populations, such as people 

with I/DD. The T-MSIS analysis demonstrated that 

waivers increase access to basic dental care in 

states without Medicaid dental coverage.

Texas provides an example of such waiver 

programs. Texas has several 1915(c) waiver 

programs and a 1115 demonstration program 

that offer enhanced dental benefits to adults with 

I/DD. A state-mandated dental study to evaluate 

these Medicaid waiver programs found that the 

dental benefits offered by the Community Living 

Assistance Services and Supports (CLASS) 

waiver were most cost effective in reducing 

nontraumatic dental condition (NTDC) ED visits. 

Compared to three other Texas Medicaid waiver 

programs, people receiving CLASS services had 

lower ED utilization, while maintaining relatively 

low dental costs.111 The state used these findings 

to inform which benefits should be offered in 

a state-mandated pilot program. Other states 

could use the Texas pilot as a model for extending 

dental benefits in their own states. A unique 

aspect of the state-mandated pilot program is it 

targets individuals with similar functional needs, 

rather than limiting it to people with a particular 

diagnosis.112

Flexibility. Owing to the wide range of 

functional and health needs within even a single 

I/DD diagnosis, like autism spectrum disorder, 

it is important for state and federal Medicaid 

policies to remain 

flexible and tailored to 

meet functional, rather 

than diagnosis-based, 

needs. Different patients, 

depending on type and/or 

severity of I/DD, may 

need different covered 

services or different frequency of services. 

This type of flexibility can be incorporated into 

Medicaid coverage. For example, eligibility for 

some Texas waiver programs, described earlier, is 

based on functional capacity, not the individual’s 

diagnosis.113 While there are specific eligibility 

requirements to qualify for services under 1915(c) 

waivers, states have flexibility within these 

requirements, including in designating target 

populations and covered services.

Incentives. Key informants also noted the 

importance of ensuring there are incentives for 

expanding care to certain populations, such as 

people with I/DD. One such structure that could 

be implemented on the federal level would be to 

increase the FMAP for states that expand oral 

A unique aspect of the statemandated pilot program is it targets 

individuals with similar functional 

needs, rather than limiting it to 

people with a particular diagnosis

48 National Council on Disability
health care to adults with I/DD. The FMAP is the 

percentage of state Medicaid expenditures the 

Federal Government contributes to the state.114

The Patient Protection and Affordable Care 

Act (ACA) created a recent precedent for such 

incentives, the Balancing Incentive Program, 

which increased the FMAP to states that made 

structural changes to increase long-term care 

services in HCBS.115 This mechanism could 

potentially be used to encourage increased 

training for oral health providers in treating 

patients with special needs.

Expanding Medicaid-Covered Dental 

Services in States with Dental Benefits. States 

that currently cover dental services in their 

Medicaid plans could expand reimbursement 

for certain dental codes to better serve 

adults with I/DD. Specific services that 

dental providers noted should be covered in 

Medicaid for adults with I/DD included (1) SDF 

application; (2) teledentistry; (3) house calls; 

and (4) desensitization and other behavior 

management techniques (e.g., use of a weighted 

blanket). The CDT codes developed by the 

American Dental Association that are used to 

bill insurers, including Medicaid, already contain 

codes related to these services, for which some 

states already reimburse providers. NCD’s 

review of the most recently available Medicaid 

dental fee schedules for each state (fee 

schedules are from 2020 and 2021) found that 

twenty-five states reimburse for SDF application 

for adults (D1354-Interim Caries MedicamentSilver Diamine Fluoride Application—Arizona, 

Colorado, Connecticut, Delaware, Hawaii, 

Illinois, Iowa, Kentucky, Massachusetts, 

Michigan, Minnesota, Montana, Nebraska, 

Nevada, New Jersey, North Carolina, North 

Dakota, Ohio, Oklahoma, Oregon, South Dakota, 

Vermont, Virginia, Washington, Wisconsin), 

while far fewer states, just ten, reimburse for 

teledentistry (D9995 and/or D9996—Colorado, 

Massachusetts, Missouri, Montana, New Jersey, 

New Mexico, North Carolina, Oregon, Virginia, 

Washington). Twenty-four state Medicaid fee 

schedules contain fees above $0 for D9410, 

the house/extended care facility call code 

(home visit), in their Medicaid fee schedules, 

but states have different restrictions on how 

providers can use this code. D9410. Some 

states, like Rhode Island, only allow providers 

to bill this code once per facility visit, regardless 

of the number of patients seen, while other 

states, such as Washington and California, are 

allowed to bill this code once per patient. The 

behavior management codes D9920 and D9997 

are sometimes used by providers to bill for 

desensitization and other behavior management 

techniques. Thirteen states reimburse providers 

for behavior management (D9920-behavior 

management, by report) in their fee schedules 

for adults (Arizona, Connecticut, Massachusetts, 

Minnesota, Montana, New Jersey, New York, 

Oregon, Pennsylvania, Rhode Island, South 

Dakota, Vermont, Washington), and three states 

reimburse for dental case management—

patients with special health care needs, D9997 

(Connecticut, Missouri, Oregon).116

Expanding Technical Assistance for Provision 

of Dental Services. CMS could include 

guidance on providing care to adults with I/DD 

through technical assistance mechanisms, 

including hosting webinar series and learning 

collaboratives, supporting data reporting, and 

engaging in intensive one-on-one work with 

targeted states, including the development of 

waivers (see later in this chapter).117 CMS already 

has technical assistance mechanisms in place. 

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 49
In 2010, CMS launched the Oral Health Initiative 

to work with states to improve Medicaid-enrolled 

children’s use of preventive dental care.

Increasing Reimbursement for Dental 

Providers. Medicaid reimbursement emerged 

as a key barrier to accessing oral health care 

from KIIs, stakeholders, and DD questionnaires. 

Some states have been advocating for better 

reimbursement to providers for the general adult 

Medicaid population, such as Michigan, where 

there has been no fee increase for decades.118

Conversations revealed approaches that both 

states and the Federal Government could take to 

improve reimbursement in Medicaid to overcome 

barriers to access.

At the state level, mechanisms that could 

raise reimbursement rates include the following:

Higher Reimbursement 

for Dental Care Provided 

to I/DD Patients. States 

have the option, through 

1915 waiver and 1115 

demonstration programs, 

to set reimbursement 

rates for dental care provided to people with 

I/DD that are higher than the general adult 

population. For example, Colorado offers higher 

reimbursement rates in their dental fee schedule 

for HCBS-DD waiver participants (e.g., $73.99 

for a comprehensive oral evaluation versus 

$37.72 for the general adult population). Similarly, 

Washington, DC, has a waiver program with 

higher fee-for-service reimbursement rates 

for treating patients with I/DD, relative to the 

general adult population. The literature review 

undertaken for this report found no evaluations 

of the impact of higher reimbursement rates 

on receipt of services in these states for this 

population.

Reimbursement Linked to Training.

New Mexico provides added reimbursement to 

dentists who receive training and certification 

for treatment of people with I/DD. Similarly, 

AmeriHealth Caritas, a Medicaid MCO operating 

in the Philadelphia, Pennsylvania, area, has a 

separate reimbursement structure for dentists 

who receive additional training to treat people 

with I/DD within their Inclusive Dental Plan for 

treatment of patients with special needs; this 

incorporates and acknowledges the increased 

amount of time providers often must spend with 

a patient with I/DD.119

Federal Legislative Mechanisms for Increasing 

Reimbursement. At the federal level, a potential 

mechanism for raising reimbursement rates may 

be to include adults with I/DD in the medically 

underserved category. 

The Healthcare Extension 

and Accessibility for 

Developmentally 

Disabled and 

Underserved Populations 

(HEADs UP) Act would 

amend the Public Health Act to include those 

with I/DD as a “Special Medically Underserved 

Population” (SMUP). If passed, this would 

increase Medicaid reimbursement rates for 

providers.120 This bill has been introduced in two 

previous Congresses and at the time of the 

writing of this report has been reintroduced in the 

117th Congress (H.R. 6075).

Increased Transparency in Reimbursement 

Rates. To demonstrate the impact of raising 

reimbursement rates on access to dental care 

and the potential best mechanisms for raising 

reimbursement rates, more transparency 

about provider reimbursement is needed. Key 

informants and stakeholders described multiple 

New Mexico provides added 

reimbursement to dentists who 

receive training and certification for 

treatment of people with I/DD

50 National Council on Disability
challenges to measuring and comparing Medicaid 

reimbursement rates across states, in large part 

because more states are opting to use MCOs to 

deliver Medicaid services. Without better publicly 

available data on actual reimbursement rates 

for providers, it is difficult to assess the optimal 

reimbursement rates to expand the Medicaid 

provider networks and increase access to dental 

care, while containing costs.

Medicaid-funded Initiatives 

to Expand Access to Services

KIIs and summit attendees highlighted several 

promising practices worthy of further exploration, 

which are funded partially or fully through state 

Medicaid programs.

Multidisciplinary Health Center. Kentucky 

created the Lee Specialty Clinic, a statewide 

multidisciplinary health center that specializes 

in providing medical and dental care to people 

with I/DD. The health center is staffed by highly 

trained doctors and dentists, who solely treat 

people with I/DD. Their extensive experience 

treating people with I/DD, and their knowledge 

of behavioral modification and desensitization 

techniques, allows them to substantially reduce 

the need to use general anesthesia in the 

operating room to provide preventive dental 

services, thereby reducing overall costs. Many of 

their patients receive Medicaid coverage, which 

partially funds the center, in addition to other 

funds that come from the state. To date, efforts 

to expand this model to other states have been 

unsuccessful due to lack of state funding.

Pilot Programs. There are several states that 

have granted expanded oral health benefits for 

other select populations without disabilities. 

Knowledge gained from evaluations of these pilot 

projects could guide expanded dental coverage 

for adults with I/DD. For example, Washington 

State’s Oral Health Connections Pilot Project 

aims to test the effect of enhanced oral health 

services, for diabetic or pregnant Medicaid clients 

ages twenty-one to sixty-four years in three 

counties, on health outcomes and cost of care. 

New York’s Medicaid program is exploring an SDF 

training program for caregivers of children. Such 

approaches could be expanded to include adults 

with disabilities. Similar small-scale experimental 

programs could be employed for adults with I/DD 

in states with less funding.

Accessible Services. The delivery of dental 

programs must be examined as well as the 

benefit itself. Pilot programs and all programs 

that expand coverage to adults should consider 

how people will be able to physically access 

care in the design of their projects. For example, 

California implemented a pilot program to provide 

additional treatment for people with higher risk 

of getting cavities. While this increased the 

covered services for patients with high caries 

risk, it required patients to come in person for 

up to four to five different visits for each product 

recommended to them under this pilot (e.g., 

fluoride varnish). They had to travel to a dental 

institution or dental school where the services 

were offered. As a result of the language in 

the pilot program guidelines, the process of 

receiving care was burdensome owing to the 

number of times patients were required to travel 

for services.121 An example of a pilot program to 

increase access was implemented in partnership 

between New Hampshire’s Division of Public 

Health Services, the state’s Medicaid agency, and 

the Women, Infants, and Children (WIC) program. 

The Pay for Prevention program offers preventive 

dental services for children and pregnant 

women at WIC offices.122 The program provided 

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 51
comprehensive preventive oral health services, 

including dental sealants, fluoride varnish, and 

oral health education delivered via public health 

hygienists and dental assistants. The program 

also provided referrals to select, local, Medicaid 

enrolled dental providers. Of 857 pregnant 

women served by the program, 37 percent 

were referred to a dentist for urgent needs, 

and 75 percent received sealants, potentially 

avoiding more painful and costly dental issues. 

Improving access to oral health care by bringing 

oral health care directly to potential beneficiaries 

through state agency partnerships or mobile 

clinics could be replicated for the I/DD population. 

For example, Missouri and New Jersey have 

implemented mobile dental clinics, which can 

overcome transportation barriers to dental care 

faced by adults with I/DD, 

especially those living 

in rural areas or with 

limited transportation 

options.123,124

Expanding Medicaid 

Provider Network 

Experienced in Treating Adults with I/DD Through 

Enhanced Training. There are also models for 

training Medicaid dental providers to work with 

the disability population, potentially expanding 

the provider network capable of treating adults 

with I/DD and increasing access. AmeriHealth 

Caritas’s Inclusive Dental Plan, a plan of the 

previously mentioned Medicaid MCO in 

Pennsylvania, also partners with dental schools to 

train oral health providers in supporting the oral 

health needs of patients with disabilities.125 The 

specialized continuing education extends beyond 

the training dental students receive in dental 

school under the revised Commission on Dental 

Accreditation (CODA) standards.

Ensuring Coordination Between DD Agencies 

and Medicaid. Coordination between DD 

agencies and Medicaid MCOs will likely better 

facilitate utilization of managed care by adult 

Medicaid beneficiaries with I/DD. As described 

earlier in the report, more states are moving 

toward managed care delivery systems for 

Medicaid administration. Thus, it will be important 

to ensure that MCOs are familiar with the I/DD 

population and their needs.

DD agencies can provide key support to 

MCOs in serving their beneficiaries with special 

needs. For example, in New Jersey, adults with 

I/DD have an assigned case manager to help 

them navigate DD services and other communitybased services. In addition, Medicaid MCOs may 

assign that same person a different care manager 

to assist with insurance 

issues and access to 

medical and dental 

services. Coordination 

between these two 

points of contact 

facilitates access to 

dental care. Accessing dental care for adults with 

I/DD requires not only the insurance coverage 

provided by the MCOs but also transportation 

and involvement of group home staff, services 

typically provided by DD contractors, requiring 

coordination between DD contractors and 

Medicaid providers.

The DD agency survey undertaken for 

this project provided examples of how some 

states pursue close coordination with MCOs. 

For example, the Delaware DD agency has 

established points of contact within the MCOs 

to improve coordination. The Connecticut DD 

agency reports being in frequent communication 

with the Connecticut Dental Health Partnership 

Missouri and New Jersey have 

implemented mobile dental clinics, 

which can overcome transportation 

barriers 

52 National Council on Disability
MCO, which manages oral health benefits. In 

Pennsylvania, DD agency staff have developed 

relationships with dental providers who specialize 

in providing dental care for people with I/DD. In 

Louisiana, representatives from the DD agency 

and Medicaid MCOs participate in a dental task 

force with I/DD advocates in the state.

DD agencies take a range of approaches to 

coordinating oral health services with their states’ 

Medicaid programs, according to the survey 

responses. Some states have regularly scheduled 

meetings or ad hoc meetings to coordinate 

benefits with the state’s Medicaid agency, 

sometimes facilitated by the agencies being 

housed in the same department. Two agencies 

(Louisiana and Washington, DC) noted they have 

a memorandum of understanding (MOU) or a 

memorandum of agreement (MOA) with the 

lead Medicaid agency. In Washington, DC, the 

agencies coordinate weekly (if not daily) through 

the MOA and MOU to provide waiver services 

to the I/DD population. Similarly, both agencies 

in Washington state coordinate to resolve oral 

health care issues.

Incorporating Patient Feedback. States 

may also institute processes for incorporating 

feedback on their programs from adults with I/DD 

and their families. The DD survey revealed that 

some states have no formal process for receiving 

input about the patient experience. Most states, 

however, mentioned receiving patient feedback 

through one of the following means: surveys, 

care coordinators, advocacy organizations, public 

commission or council meetings, and an advisory 

body. Additional practices included a complaint 

hub in Florida that handled complaints from 

patients and public forums held by the Ohio DD 

agency and the Ohio Department of Medicaid.

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 53
54 National Council on Disability
Chapter 6: Opportunities Outside of Medicaid

Beyond the Medicaid program, other actors 

are working to expand access to oral 

health care for people with special needs. 

For example, legislation was introduced in the 

117th Congress to include dental benefits in 

Medicare, including the Medicare Dental, Vision, 

and Hearing Act of 2021 (H.R. 4311) that would 

add a dental benefit to Medicare Part B.126 If this 

or similar legislation were 

passed, enacted, and 

funded, adults with I/DD 

across the United States 

who are eligible for 

Medicare would receive 

dental benefits coverage.

Other smaller-scale 

initiatives should be 

assessed to determine 

whether they would 

be cost effective for 

Medicaid. For example, 

a pilot program implemented in the Virginia VA 

Community Living Center required nursing staff 

to brush the teeth of residents once a day. This 

program resulted in reducing the incidence of 

pneumonia by approximately 90 percent and 

an estimated savings of $9.4 million over three 

years, as of July 2019.127

Community dental centers, housed at 

universities and teaching hospitals, provide 

dental students opportunities to serve a 

wide range of patients, including those with 

disabilities and I/DD. Examples of this model 

are the Community Dental Center at Harvard 

that uses students as dental providers and 

assistants, and clinics at Temple University, 

Rutgers, and NYU.128–131 Dental schools in 

Washington, Arizona, and New York offer 

fellowships and 

residencies for providers 

interested in serving 

patients with special 

needs. State and local 

boards can also require 

board-certified dentists 

to take continuing dental 

education courses on 

treatment of patients 

with special needs.

Some promising 

practices aim to increase 

coordination between medical and dental 

providers. For example, the Arc of Mercer County 

in New Jersey currently runs a medical center 

offering medical, behavioral, and podiatry care to 

people with I/DD and soon will be offering dental 

care, all under one roof.132

The University of Buffalo has been exploring 

the creation of a dentist and occupational 

therapist program. The program would aim 

[A] pilot program implemented in 

the Virginia VA Community Living 

Center required nursing staff to 

brush the teeth of residents once 

a day. This program resulted

in reducing the incidence of 

pneumonia by approximately 

90 percent and an estimated savings 

of $9.4 million over three year

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 55
to incorporate dental hygiene into training for 

occupational therapists to help patients with daily 

oral hygiene maintenance and educating dentists 

on how to handle their patients.133

Beyond these promising practices, summit 

attendees and key informants provided other 

insights into improving access to oral health care 

for adults with I/DD.

Patient-Centered Care. Interviewees 

described patient-centered care that includes 

asking patients about their goals for care, as 

an approach that improves care. Relatedly, one 

stakeholder noted the importance of promoting 

sensory accommodations 

(i.e., light dimmers, 

softer colors, weighted 

blankets) as an 

accommodation covered 

under the Americans 

with Disabilities Act, 

along with more obvious 

accommodations for 

people with physical 

disabilities like chair lifts and wider doorways.

Training Caregivers on Oral Hygiene. 

Interviewees also noted the importance of 

training direct support professionals (DSPs) 

and others of the home health aide workforce 

about oral hygiene. Often this workforce is 

responsible for daily hygiene activities for many 

people with disabilities, including maintenance 

of oral health. New Jersey provides an 

example of implementing this approach. In 

2021, the New Jersey chapter of the American 

Academy of Pediatrics began working with the 

developmental disabilities agency to include oral 

health information in DSPs’ training as part of 

the Improving Oral Health across the Lifespan 

Program.134

Areas for Future Research

NCD’s research has highlighted key gaps 

in overall research and data that should be 

addressed to ensure that Medicaid policy and 

programs best address the oral health disparity 

experienced by adults with I/DD in a costeffective manner.

Data on Reimbursement Rates. 

Reimbursement levels provided by managed 

care organizations to health care providers 

are not publicly available, making it virtually 

impossible for researchers to gather accurate 

data about actual reimbursement rates. As 

described earlier, prior 

research on the impact 

of reimbursement rates 

on receipt of health care 

has compared receipt 

of health care before 

and after policy changes 

that directed Medicaid 

agencies to increase 

reimbursement rates, rather than examining 

reimbursement rates directly. This data could 

be used to pinpoint the optimal reimbursement 

rates that both ensure adequate Medicaid 

participation among health care providers and 

are cost effective.

Ongoing Evaluation of Pilot Programs. As 

noted earlier, innovative and promising publicly 

funded state and local pilot programs should 

be evaluated for effectiveness and costeffectiveness to inform Medicaid policy and 

payment structures.

Effects of Specific Benefits. Future studies 

should examine the specific benefits within 

waiver programs that are most associated with 

cost-effective outcomes. Most evaluations of 

In 2021, the New Jersey chapter 

of the American Academy of 

Pediatrics began working with the 

developmental disabilities agency 

to include oral health information in 

DSPs’ training 

56 National Council on Disability
waiver programs examine packages of benefits. 

To the extent possible, disentangling the impact 

of specific elements of these programs would 

improve knowledge about effective interventions 

to improve oral health outcomes for adults 

with I/DD.

Medicaid Policy for the General Adult 

Population. It is vital that there is ongoing 

research to examine the impact on adults with 

I/DD of new or proposed Medicaid policies 

targeted at the general adult population. 

For example, a University of Michigan study 

examined the potential impact of the state’s 1115 

waiver work requirements. The study found that 

94 percent of Medicaid beneficiaries who were 

unable to work had chronic physical or mental 

health conditions, and nearly 50 percent had 

impaired mental functions that did not allow 

them to work.135 A federal court in 2020 struck 

down work requirements in state Medicaid 

1115 waivers as unlawful, in part owing to their 

restrictions on access to care.136

Dental Treatment in the Operating Room. As 

described in chapter 2 some adults with I/DD 

receive oral health treatment in the OR because 

they require general anesthesia to tolerate the 

treatment. Adults with I/DD who receive routine 

dental care in the OR often are among the 

most vulnerable of adults with I/DD. Many are 

nonverbal and unable to articulate experiences of 

oral pain. There are many drawbacks to providing 

basic or routine dental treatment in the OR, 

including the dangers of general anesthesia, 

the expense, the difficulty of coordinating this 

type of care, and the typically long wait times 

for OR care. There is very little research available 

on the rates of receipt of dental care in the OR, 

the average wait time for routine dental care, 

the trends in availability of ORs for dental care, 

effective dental practices to treat these patients 

outside the OR, and the cost-effectiveness of 

investing in training of dental providers to reduce 

the need for OR care. As described in chapter 5, 

highly trained dental providers may be able to 

reduce the need for OR care. More research is 

needed about the best approaches to addressing 

the dental needs of adults with the most serious 

forms of I/DD.

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 57
58 National Council on Disability
Conclusions

T

his report used a mixed-methods approach 

to address the overarching research 

question: should CMS require state 

Medicaid agencies to implement Medicaid 

reimbursement and payment policies that 

promote access to dental care for adults with 

I/DD, and could that ultimately be a cost-effective 

option over the long term? Because Medicaid 

adult dental benefits vary widely by state, 

and there is a dearth of research on how the 

Medicaid program should be structured to best 

address oral health disparities for adults with 

I/DD, NCD assessed multiple aspects of the 

Medicaid program, at the state and federal levels.

The research examined the relationship 

between state Medicaid dental benefits and 

receipt of basic dental care among adults with 

I/DD and the estimated cost and potential 

savings of implementing basic dental Medicaid 

benefits in states that do not currently do so. 

Further, NCD examined the role of coordination 

between DD agencies and Medicaid agencies for 

improving access to dental care and promising 

Medicaid-funded state strategies and privately 

funded local strategies for expanding dental care 

for adults with I/DD.

Key Findings from the research presented in 

this report follow.

The total estimated cost of providing 

extensive dental benefits to adults with I/DD in 

the twelve states that do not currently provide 

dental benefits would be about $19.6 million 

annually, with the Federal Government 

responsible for approximately $12.3 million 

of that cost. However, total cost reductions 

from implementing a dental benefit, through 

reductions in emergency department use and 

hospital admissions and in the cost of treating 

chronic diseases exacerbated by poor oral health, 

would be $27.3 million. In total, introducing 

a dental benefit would lead to an estimated 

$7.7 million return on investment.

Adults with I/DD are substantially more 

likely to receive basic dental care if they live in 

states with Medicaid dental benefits for adults, 

relative to adults with I/DD that live in states 

without these benefits. In the twelve states 

that do not provide Medicaid dental benefits 

to adults, seven have Medicaid waivers that 

expand dental benefits for adults with I/DD. Adult 

Medicaid beneficiaries with I/DD in these waiver 

states were 50 percent more likely to receive 

basic dental care, compared to adult Medicaid 

beneficiaries with I/DD in states without waivers.

Even in states with extensive dental 

benefits, only one-third of adult Medicaid

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 59
beneficiaries with I/DD received basic dental 

care, paid for by Medicaid, in a year. Many 

barriers to receiving 

dental care for 

adults with I/DD 

remain. Among these 

barriers is the lack 

of dental providers 

who participate in 

Medicaid. Medicaid 

reimbursement rates are significantly lower 

than reimbursement rates provided by 

private insurers. Although data is unavailable 

to thoroughly assess the impact of raising 

reimbursement rates 

on the participation of 

dental care providers 

providing treatment to 

patients with I/DD in 

Medicaid, prior research 

indicates that policies 

that increased Medicaid 

reimbursement rates increased access to 

medical care for Medicaid beneficiaries.

Even in states with extensive dental 

benefits, only one-third of adult 

Medicaid beneficiaries with I/DD 

received basic dental care, paid for 

by Medicaid, in a year

60 National Council on Disability
Key Recommendations

Based on the research presented in this 

report, the key recommendations are as 

follows:

Congress:

■ NCD recommends that Congress pass 

legislation that would require state 

Medicaid programs to provide extensive 

adult dental benefits for people with I/DD 

or create financial incentives for states 

to do so. States should have flexibility in 

implementing dental benefits to ensure 

they address the needs of their I/DD 

population. Evaluations of existing state 

programs should inform the design and 

implementation of these benefits. 

States:

■ As we acknowledge that federal legislation 

can require a lengthy process for passage, 

NCD also recommends that states should 

add dental benefits for adults with I/DD to 

existing or new 1915(c) and 1915(i) waivers 

or 1115 demonstrations. States can refer to 

waivers in other states that extend dental 

coverage to adults with I/DD as a starting 

point or template to design their own 

programs. States should consider available 

data about and evaluations of these waiver 

programs to prioritize the types of dental 

services and target populations to include in 

their own waivers. States can use available 

data as guidance to maximize access to 

key, cost-effective dental services while 

balancing available funding. 

■ States should create greater transparency 

concerning managed care reimbursement 

rates. The lack of dental providers who 

participate in Medicaid remains a barrier 

to receipt of dental care. There is a lack 

of publicly available data about Medicaid 

Managed Care Organization reimbursement 

rates for dental care providers and creating 

policies that incentivize dental providers to 

participate requires an analysis of current 

rates.

■ States should fund additional programs that 

would improve oral healthcare for people 

with I/DD. Other barriers to oral health care 

must be addressed and could be funded 

through the Medicaid program, including 

expanding the dental workforce whose 

members have expertise in treating adults 

with I/DD through continuing education 

programs, implementing programs 

that improve daily oral care provided by 

caregivers, and improving education and 

support for good oral hygiene for adults 

with I/DD. Additionally, states must address 

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 61
transportation barriers. States should 

coordinate services between DD agencies 

and Medicaid providers.

U.S. Department of Health 

and Human Services

■ The U.S. Department of Health and Human 

Services, through the Administration 

on Community Living, should conduct 

additional research to offer policy insights 

and recommendations that would reduce 

the need for the receipt of dental care in 

the OR and to improve access to the OR for 

people with I/DD. Many adults with serious 

I/DD receive basic dental care under general 

anesthesia in hospital ORs. Providing basic 

dental care in the OR is expensive. Further, 

adults with I/DD typically face long waiting 

lists to receive such care, owing to the 

shortage of available OR space for these 

procedures. More research is needed to 

pinpoint clear policy recommendations that 

would reduce the need for the receipt of 

dental care in the OR and to improve access 

to the OR for these vulnerable adults who 

face serious challenges.

62 National Council on Disability
Appendices

Appendices: Contents

Appendix A: Agenda and Attendee List for Virtual Stakeholder Meeting . . . . . . . . . .  6

Appendix B: Questionnaire to State Directors of Developmental 

Disabilities Agencies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Appendix C: Details About the Fifty-State and DC Medicaid Oral Health 

Policy Database . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  7

General Medicaid Characteristics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 74

Waivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  7

Medicaid Fee-for-Service Fee Schedules . . . . . . . . . . . . . . . . . . . . . . . . . . .  8

Medicaid Fee Schedule and Frequency Sources . . . . . . . . . . . . . . . . . . . .  8

CDT Code Descriptors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  8

Appendix D: ICD-10 Diagnosis Codes for Autism Spectrum Disorder, 

Intellectual Disability and Related Conditions, Cerebral Palsy, and Other 

Developmental Delays . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  8

Appendix E: Details About T-MSIS Sample . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  8

Appendix F: Developmental Disabilities Agency Leader Questionnaire 

Responses About Barriers to Oral Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  8

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 63
64 National Council on Disability
Appendix A: Agenda and Attendee List for Virtual 

Stakeholder Meeting

Making Sufficient Oral Health Care for People with I/DD a Cost-Effective Reality: 

Examining the Medicaid Reimbursement Rate

Tuesday, November 17, 2020 | 10:00 AM–12:30 p.m. EST 

National Center for Children in Poverty, Bank Street Graduate School of Education

Health Policy Institute, American Dental Association

Funded by the National Council on Disability

Agenda

*Times in Eastern

1. National Council on Disability introduction to study goals and background (10:00–10:10 a.m.)*

2. Introduction to the study team (10:10–10:15 a.m.)

3. Presentation of our study methods (10:15–10:30 a.m.)

i. Research questions

ii. Methods

iii. Timeline 

4. First round of breakout discussions (10:30–11:00 a.m.)

a. Introductions within breakouts 

b. Obtaining feedback on key aspects of the study 

i. Innovative state Medicaid policies and Medicaid policy dimensions

ii. Medicaid claims data methodology and analysis advice

iii. Coordination of state DDD and Medicaid agencies and innovative oral health care practices 

in DDD agencies

iv. Comments on study goals and research questions and other important considerations for 

oral health care access for the I/DD population

5. Transition to second round of breakout rooms (11:00–11:05 a.m.)

6. Second round of breakout discussions (11:05–11:30 a.m.)

a. Introductions within breakouts

b. Obtaining feedback on key aspects of the study 

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 65
i. Innovative state Medicaid policies and Medicaid policy dimensions (1 of 2)

ii. Innovative state Medicaid policies and Medicaid policy dimensions (2 of 2)

iii. Coordination of state DDD and Medicaid agencies and innovative oral health care practices 

in DDD agencies

iv. Comments on study goals and research questions and other important considerations for 

oral health care access for the I/DD population

7. Report out to the group (11:30 a.m.–12:00 p.m.)

8. Next steps (12:00–12:15 p.m.)

Attendees

Name Title Organization

Steve Beetstra President Special Care Dentistry Association (SCDA)

Alixe Bonardi Senior Policy Specialist Human Services Research Institute

Melissa Burroughs Senior Oral Health 

Campaign Manager

Families USA

Natalia Chalmers Chief Dental Officer Centers for Medicare & Medicaid Services

Stacey Chazin Director of Capacity 

Building and Technical 

Assistance

Oral Health Progress and Equity Network 

(OPEN)

Carrie Coffield Assistant Professor of 

Pediatrics

The Boggs Center on Developmental 

Disabilities, Rutgers RWJMS

Jack Dillenberg Dentist, Dean Emeritus Arizona School of Dentistry and Oral Health

Marty Ford Senior Advisor The Arc

David Fray Dentist American Academy of Developmental 

Medicine & Dentistry (AADMD)

Brooke Fukuoka Dentist American Dental Association (ADA) Council on 

Advocacy for Access and Prevention (CAAP)

Dena Gassner PhD candidate/Board 

Member

Adelphi University/Board of Directors, The Arc

Carrie Hanlon Project Director National Academy for State Health Policy 

(NASHP)

Matthew Holder ABDM Liaison American Academy of Developmental 

Medicine and Dentistry (AADMD)

Greg Howe Senior Program Officer Center for Health Care Strategies

Joseph Macbeth President and CEO National Alliance for Direct Support 

Professionals (NADSP)

Mike Monopoli Vice President of Grant 

Strategy 

DentaQuest

66 National Council on Disability
Name Title Organization

Steven Perlman Global Clinical Advisor 

and Founder

Special Olympics Special Smiles

Madeline Pucciarello Program Officer Center for Health Care Strategies

Gary Pickard Director of Government 

and Industry Services

Pacific Dental Services Foundation

Colin Reusch Senior Advisor for Oral 

Health Policy

Community Catalyst

Bonnie T. Stanley Dental Director Dental Director NJ Family Car

John Tschida Executive Director Association of University Centers on 

Disabilities (AUCD)

Barbie Vartanian Executive Director Project Accessible Oral Health (PAOH)

Bridget Walsh Senior Policy Analyst Medicaid Matters (New York State)

Allen Wong President American Academy of Developmental 

Medicine and Dentistry (AADMD)

Christine Wood Executive Director Association of State and Territorial Dental 

Directors (ASTDD)

Billy Altom Council Member National Council on Disability

Joan Durocher General Counsel & 

Director of Policy

National Council on Disability

Rick Rader Council Member National Council on Disability

Amged Soliman Attorney Advisor National Council on Disability

Emma Browse Graduate Research 

Assistant

National Center for Children in Poverty, Bank 

Street College of Education

Chelsea Fosse (Co-PI) Senior Health Policy 

Analyst

Health Policy Institute, American Dental 

Association

Jennifer Hernandez Graduate Research 

Assistant

National Center for Children in Poverty, Bank 

Street College of Education

Heather Koball 

(Co-PI)

Codirector National Center for Children in Poverty, Bank 

Street College of Education

Akilah Moore Administrative 

Assistant

National Center for Children in Poverty, Bank 

Street College of Education

Suma Setty Senior Research 

Associate

National Center for Children in Poverty, Bank 

Street College of Education

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 67
68 National Council on Disability
Appendix B: Questionnaire to State Directors 

of Developmental Disabilities Agencies

Purpose: This fifty-state (and Washington, DC) questionnaire is sponsored by the National Council on 

Disability and is meant to aid in better understanding how DD agencies coordinate care for adults with 

intellectual and developmental disabilities (IDD). We are also interested in learning about oral health 

benefits conferred to adults with IDD served by DD agencies in your state.

Background: The Bank Street Graduate School of Education and the Health Policy Institute at the 

American Dental Association are conducting a ten-month study funded by the National Council on 

Disability. The study focuses on Medicaid policies that cover oral health services and aims to identify 

best Medicaid-related practices and policies related to oral health care for adults with IDD.

Security: Qualtrics, this questionnaire platform, uses Transport Layer Security (TLS) encryption 

(also known as HTTPS) for all transmitted data (visit the website https://www.qualtrics.com/security

-statement/ for more details). Findings from this questionnaire may be reported at the national or state 

levels. We will only identify your state/agency name in our final report with your permission.

Q3 First and Last Name

Q4 Title/Role

Q5 Agency Name

End of Block: Default Question Block

Start of Block: State

Q6 In which state do you currently reside?

▼ Alabama . . . Wyoming

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 69
End of Block: State

Start of Block: Block 2

Display Question 7: If Q6 = California Or Q6 = Colorado Or Q6 = Connecticut Or Q6 = Delaware Or 

Q6 = District of Columbia Or Q6 = Idaho Or Q6 = Illinois Or Q6 = Iowa

Or Q6 = Massachusetts Or Q6 = Montana Or Q6 = New Jersey Or Q6 = New Mexico Or Q6 = 

New York Or Q6 = North Carolina Or Q6 = North Dakota Or Q6 = Ohio Or Q6 = Oregon

Q7 Our understanding is that your state provides extensive dental benefits to adults who are 

covered by Medicaid (see DentaQuest’s Jan 2020 Report for more details on what constitutes 

“extensive”).

If adults with IDD served by your agency receive additional oral health services compared to 

the general Medicaid adult population (e.g., more dental cleanings covered by Medicaid, publicly 

funded clinics), how do you educate the people served by your agency and their family members and 

caregivers about these additional services?

If adults with IDD served by your agency do not receive additional oral health services, please type 

“N/A or none.”

End of Block: Block 2

Start of Block: Block 3

Display Question 8: If Q6 = Alaska Or Q6 = Arizona Or Q6 = Arkansas Or Q6 = Florida Or Q6 = Georgia 

Or Q6 = Hawaii Or Q6 = Indiana Or Q6 = Kansas Or Q6 = Kentucky Or Q6 = Louisiana Or Q6 = Maine 

Or Q6 = Michigan Or Q6 = Minnesota Or Q6 = Mississippi Or Q6 = Nebraska Or Q6 = Nevada Or 

Q6 = New Hampshire Or Q6 = Oklahoma Or Q6 = Pennsylvania Or Q6 = South Carolina Or Q6 = South 

Dakota Or Q6 = Texas Or Q6 = Utah Or Q6 = Vermont Or Q6 = Virginia Or Q6 = West Virginia Or Q6 = 

Wyoming

Q8 Our understanding is that your state provides limited or emergency-only dental benefits to adults 

who are covered by Medicaid (see DentaQuest’s Jan 2020 Report for more details on what constitutes 

“limited and emergency-only”).

If adults with IDD served by your agency receive additional oral health benefits compared to the 

general Medicaid adult population (e.g., additional covered dental cleanings), how do you educate 

the people served by your agency and their family members and caregivers about these additional 

services?

If adults with IDD served by your agency do not receive additional oral health services, please type 

“N/A or none.”

70 National Council on Disability
End of Block: Block 3

Start of Block: Block 6

Display Question 9: If Q6 Alaska Or Q6 = Arizona Or Q6 = Arkansas Or Q6 = California Or Q6 = 

Colorado Or Q6 = Connecticut Or Q6 = Delaware Or Q6 = District of Columbia Or Q6 = Florida 

Or Q6 = Georgia Or Q6 = Hawaii Or Q6 = Illinois Or Q6 = Indiana Or Q6 = Iowa Or Q6 = Kansas Or 

Q6 = Kentucky Or Q6 = Louisiana Or Q6 = Maine Or Q6 = Massachusetts Or Q6 = Michigan Or Q6 = 

Minnesota Or Q6 = Mississippi Or Q6 = Missouri Or Q6 = Montana Or Q6 = Nebraska Or Q6 = 

Nevada Or Q6 = New Jersey Or Q6 = New Mexico Or Q6 = New York Or Q6 = North Carolina Or Q6 = 

North Dakota Or Q6 = Ohio Or Q6 = Oklahoma Or Q6 = Oregon Or Q6 = Pennsylvania Or Q6 = Rhode 

Island Or Q6 = South Carolina Or Q6 = South Dakota Or Q6 = Texas Or Q6 = Utah Or Q6 = Vermont Or 

Q6 = Virginia Or Q6 = Washington Or Q6 = West Virginia Or Q6 = Wisconsin Or Q6 = Wyoming

Q9 How does your agency coordinate health care services for adults with IDD, particularly oral 

health care, with your state’s Medicaid agency (e.g., Do you have an MOU in place? Are there regularly 

scheduled meetings between the agencies? Are there regulations related to this coordination?)?

End of Block: Block 6

Start of Block: Block 4

Display Question 10: If Q6 = Alabama Or Q6 = Maryland Or Q6 = Tennessee

Q10 Our understanding is that your state does not provide dental benefits to adults who are covered 

by Medicaid (see DentaQuest’s Jan 2020 Report, available at https://www.carequest.org/system/files

/CareQuest-Institute-Health-Mouths-Why-They-Matter-for-Adults-and-State-Budgets-Brief.pdf).

If adults with IDD served by your agency receive additional oral health services compared to the 

general population of adults covered by Medicaid, how do you educate the people served by your 

agency and caregivers about these additional services?

If adults with IDD do not receive additional oral health benefits please type “N/A or none.”

End of Block: Block 4

Start of Block: Block 5

Q11 If your agency has a budget for oral health-related services and activities for adults with IDD, 

please describe these services and activities and funding sources.

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 71
Q12 From your perspective, what are the main barriers to oral health care for adults with IDD in your 

state?

Q13 How do you go about including patients, and receiving their input, at your agency and intra-agency 

meetings concerning “the patient experience”?

Q14 Would you be willing to speak with us over the phone for approximately thirty minutes about oral 

health issues for adults with IDD in your state? Or is there someone else in your agency you would 

recommend we speak with (please add contact information below)?

Q15 Thank you for contributing your time to this important project to better understand oral health care 

services for adults with IDD.

For more information about this survey, please contact Suma Setty at ssetty@bankstreet.edu.

72 National Council on Disability
Appendix C: Details About the Fifty-State 

and DC Medicaid Oral Health Policy Database

The Medicaid Oral Health Policy Database (MOHPD) contains information relevant to Medicaid state 

policy and the oral health of adults with intellectual and/or developmental disabilities (I/DD) in each 

state and the District of Columbia (DC). The MOHPD compiles original data collected from Centers for 

Medicare and Medicaid Services (CMS) waiver applications and other materials and state Medicaid fee 

schedules, and consolidates relevant data from leading sources of information about oral health and 

Medicaid research, including the Kaiser Family Foundation, the American Dental Association’s Health 

Policy Institute, the Medicaid/Medicare/CHIP Services Dental Association, and the U.S. Bureau of Labor 

Statistics.

To date, this is the only database that consolidates key information about Medicaid dental waiver 

programs and available Medicaid maximum fee-for-service (FFS) fees for select Code on Dental 

Procedures and Nomenclature (CDT) from all fifty states and DC. The information on Medicaid dental 

waiver programs shows which states have decided to expand dental services for adults with I/DD, 

what dental benefits beyond those in the state plan are available under the waiver programs, and 

specifics about the populations granted expanded dental benefits under the waiver. For most 1915 

waivers, there is additional information on the cost cap of dental services allowed per waiver enrollee 

and the number of enrollees per waiver year. FFS fees show whether a state has listed an amount for 

CDT codes relevant to the oral health of adults with I/DD, like behavior management (D9920), in their 

Medicaid fee schedule and the maximum reimbursement rate Medicaid will reimburse providers who 

bill for this service.

While the purpose of the CDT code is to “achieve uniformity, consistency and specificity in 

accurately documenting dental treatment,”137 codes may be applied differently state by state. For 

example, in New Mexico, the D9920-behavior management code is reserved for use by dental 

providers who have completed a special needs care training program, which is not the case in 

other states.138 Another example is Massachusetts, where fees for some dental codes are listed as 

Individual Consideration, or IC, meaning that some procedures would be reimbursed based on several 

factors such as the time required to perform the procedure and the severity and/or complexity of the 

patient’s condition, among others.139 In addition, some states may have different fee schedules for 

waiver program enrollees than the general population and/or different fees depending on the region 

of the state (e.g., Hawaii). The MOHPD displays FFS fees for the general adult population as found on 

publicly available Medicaid fee schedules. No Medicaid FFS dental fee schedules for the general adult 

population exist for states with no dental coverage for the general adult population, and fees were 

listed as n/a, or not applicable.

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 73
The CDT Codes selected for inclusion in the MOHPD were as follows:

1. the most common procedure codes for adults, as identified in prior research of the American 

Dental Association’s Health Policy Institute140;

2. related to prevention and/or arrest of dental disease such as nutritional and oral hygiene 

counseling, topical fluoride application, and silver diamine fluoride (SDF); and/or

3. adjunctive services that—when offered and paid for—promote access to oral health care for the 

I/DD population, such as behavior management, case management, and teledentistry.

The remainder of this appendix provides a brief explanation of relevant dimensions contained in the 

database.

Database Sections (correspond with tabs in Excel spreadsheet):

General Medicaid Characteristics

Waivers

Medicaid Fee-for-Service Fee Schedules

Medicaid Fee Schedule and Frequency Sources

CDT Code Descriptors

General Medicaid Characteristics

1. Medicaid fee-for-service (FFS) reimbursement rates for adult dental care services as percentage of 

fees charged by dentists, 2016

a. Column B

b. Field: Percentage

c. Source of Data: N. Gupta, C. Yarbrough, M. Vujicic, A. Blatz, and B. Harrison, Medicaid Fee-ForService Reimbursement Rates for Child and Adult Dental Care Services for All States, 2016 

(Chicago: Health Policy Institute, American Dental Association, 2017). 

d. Explanation: Higher reimbursement rates may mean more dentists are available to serve 

Medicaid patients. Only collected for those classified as extensive dental benefits in 2016

2. Medicaid FFS reimbursement rates for adult dental care services as percentage of private 

reimbursement for dental services, 2016

a. Column C

b. Field: Percentage

c. Source: Gupta et al., Medicaid Fee-For-Service Reimbursement, 2017. 

d. Explanation: Higher reimbursement rates may mean more dentists are available to serve 

Medicaid patients.

74 National Council on Disability
3. As of September 8, 2021, has the state expanded Medicaid to 138 percent of Federal Poverty 

Level for Adults?

a. Column D

b. Field: Yes or No 

c. Source: Kaiser Family Foundation, Status of State Medicaid Expansion Decisions: Interactive 

Map (October 1, 2020), accessed October 15, 2020, https://www.kff.org/medicaid/issue-brief

/status-of-state-medicaid-expansion-decisions-interactive-map/.

d. Explanation: More people being served by Medicaid

4. Date of Medicaid expansion implementation, if applicable

a. Column E

b. Source: Kaiser Family Foundation, Status of State Medicaid Expansion Decisions: Interactive 

Map (October 1, 2020), accessed October 15, 2020. https://www.kff.org/medicaid/issue-brief

/status-of-state-medicaid-expansion-decisions-interactive-map/.

5. Is dental access delivered via fee for service, managed care, or both?

a. Column F

b. Fields: Fee For Service (FFS) and/or Managed Care (MC) 

c. Source: Medicaid/Medicare/CHIP Services Dental Association (MSDA), 2019 National Policy, 

2019, accessed October 2020. https://www.msdanationalprofile.com/profiles/2019/national/all

/policy (free account creation required to access).

d. Note about the MSDA source: MSDA surveys all fifty states and DC Medicaid and CHIP 

Oral Health Programs. MSDA data collected in the MOHPD reflects the answers from that 

survey of state representatives. The latest available data is from 2019. This column describes 

the delivery models for dental services to adults and children. If a state appears in the list 

for “Dental access under FFS,” then it was classified as FFS. If a state appears in the list for 

“Dental Access under Managed Care,” then it was classified as MC. If it appeared in both lists, 

it was classified as FFS and MC. In states classified as FFS and MC, some dental services 

are delivered FFS, and/or different populations may receive dental services through different 

delivery methods (FFS or MC).

e. Explanation: Reimbursement rates for dental services delivered via managed care are not 

publicly available. Medicaid fee schedules reflect fees for dental services delivered via FFS.

6. 2021 NASHP classification of Medicaid adult dental coverage 

a. Column G

b. Fields: No Coverage, Emergency, Limited, Extensive

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 75
c. Source: National Academy for State Health Policy, State Medicaid Coverage of Dental Services 

for General Adult and Pregnant Populations (2021), accessed September 2021, https://www

.nashp.org/state-medicaid-coverage-of-dental-services-for-general-adult-and-pregnant-populations/.

d. Explanation: This is the latest classification of adult Medicaid dental benefits across all fifty 

states and DC.

7. 2018 CHCS classification of Medicaid adult dental coverage (general dental benefits for adults)

a. Column H

b. Fields: No coverage, Emergency Only, Limited, Extensive

c. Source: Medicaid Adult Dental Benefits: An Overview (Hamilton, NJ: Center for Health Care 

Strategies, Inc., July 2018), https://www.chcs.org/media/Adult-Oral-Health-Fact-Sheet_072718.pdf.

d. Explanation: The 2018 classification was used for Transformed Medicaid Statistical Information 

System (T-MSIS) analysis to align with the year of T-MSIS claims data.

8. Is behavior management covered for special populations? 

a. Column I

b. Fields: Yes/No

c. Source: Medicaid/Medicare/CHIP Services Dental Association (MSDA), MSDA National 

Profile: Benefits, D9920-Behavior Management (2019), accessed October 2020, https://www

.msdanationalprofile.com/profiles/2019/national/all/benefits/dental-codes/37?chip=0 (free account 

creation required to access).

d. Explanation: It is a measure that would benefit patients with I/DD and may increase the 

likelihood of patients returning for dental visits. This may decrease the likelihood of advanced 

dental complications. Desensitization is folded into this (no separate code). 

9. Is case management covered for special populations? (Y/N)

a. Column J

b. Fields: Yes/No and any qualitative information about the populations covered

c. Source: Medicaid/Medicare/CHIP Services Dental Association (MSDA), MSDA National Profile: 

Benefits, D9991-9994 Case Management Codes Coverage (2019), accessed October 2020, 

https://www.msdanationalprofile.com/profiles/2019/national/all/benefits/dental-codes/39?chip=0

(free account creation required to access).

d. Explanation: It is a preventative measure that would decrease the likelihood of advanced dental 

complications. 

10. Is fluoride varnish covered and for which populations (D1206)?

a. Column K

b. Fields: Not covered/Adults/Children/Pregnant women/Medicaid Expansion/etc., and any 

qualitative information about the populations covered and frequencies allowed

76 National Council on Disability
c. Source: Medicaid/Medicare/CHIP Services Dental Association (MSDA), MSDA National 

Profile: Benefits, D1206-Fluoride Varnish Coverage (2019), accessed October 2020, https://

www.msdanationalprofile.com/profiles/2019/national/all/benefits/dental-codes/12?chip=0 (free 

account creation required to access).

d. Explanation: It is a preventative measure that would decrease the likelihood of advanced dental 

complications.

11. Fluoride varnish coverage description

a. Column L

b. Fields: Contains information about what populations are eligible for the benefit as well as 

frequency limitations to the benefit

c. Source: Medicaid/Medicare/CHIP Services Dental Association (MSDA), MSDA National 

Profile: Benefits, D1206-Fluoride Varnish Coverage (2019), accessed October 2020, https://

www.msdanationalprofile.com/profiles/2019/national/all/benefits/dental-codes/12?chip=0 (free 

account creation required to access).

12. Is fluoride treatment covered and for which populations (D1208)?

a. Column M

b. Fields: Not covered/Adults/Children/Pregnant women/Medicaid Expansion/etc., and any 

qualitative information about the populations covered and frequencies allowed

c. Source: Medicaid/Medicare/CHIP Services Dental Association (MSDA), MSDA National Profile: 

Benefits, D1208-Fluoride Treatment Coverage (2019), accessed October 2020, https://www.

msdanationalprofile.com/profiles/2019/national/all/benefits/dental-codes/11?chip=0 (free 

account creation required to access).

d. Explanation: It is a preventative measure that would decrease the likelihood of advanced dental 

complications.

13. Fluoride treatment coverage description

a. Column N

b. Contains information about what populations are eligible for the benefit as well as frequency 

limitations to the benefit

c. Source: Medicaid/Medicare/CHIP Services Dental Association (MSDA), MSDA National Profile: 

Benefits, D1208-Fluoride Treatment Coverage (2019), accessed October 2020, https://www

.msdanationalprofile.com/profiles/2019/national/all/benefits/dental-codes/11?chip=0 (free account 

creation required to access).

14. Is silver diamine fluoride application covered and for which populations (D1354)? 

a. Column O

b. Fields: Not covered/Adults/Children/Pregnant women/Medicaid Expansion/etc., and any 

qualitative information about the populations covered and frequencies allowed

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 77
c. Source: Medicaid/Medicare/CHIP Services Dental Association (MSDA), MSDA National 

Profile: Benefits, Silver Diamine Fluoride (2019), accessed October 2020, https://www

.msdanationalprofile.com/profiles/2019/national/all/policy/silver-diamine-flouride (free account 

creation required to access).

d. Explanation: It is a preventative measure that would decrease the likelihood of advanced dental 

complications.

15. Silver diamine fluoride application coverage description

a. Column P

b. Contains information about what populations are eligible for the benefit as well as frequency 

limitations to the benefit

c. Source: Medicaid/Medicare/CHIP Services Dental Association (MSDA), MSDA National 

Profile: Benefits, Silver Diamine Fluoride (2019), accessed October 2020, https://www

.msdanationalprofile.com/profiles/2019/national/all/policy/silver-diamine-flouride (free account 

creation required to access).

16. State FMAP Fiscal Year 2021 rates

a. Column Q

b. Fields: Percentages

c. Source: Kaiser Family Foundation, Federal Medical Assistance Percentage (FMAP) for Medicaid 

and Multiplier, FY 2021, accessed September 29, 2021, https://www.kff.org/medicaid/state

-indicator/federal-matching-rate-and-multiplier/?currentTimeframe=0&sortModel=%7B%22colId

%22:%22Location%22,%22sort%22:%22asc%22%7D.

d. Explanation: Federal Medical Assistance Percentage (FMAP) is the rate of federal Medicaid 

money allocated to each state. This is used in T-MSIS analysis. Note: These rates do not include 

the 6.2 percent increase as legislated in the Families First Coronavirus Response Act (FFCRA).

17. 2018 mean hourly wage for general dentists 

a. Column R

b. Field: Dollar ($) amount

c. Source: Bureau of Labor Statistics, Occupational Employment and Wage Statistics, State 

(May 2018), https://www.bls.gov/oes/tables.htm.

d. Explanation: This information was captured to create average weights for fees across states.

18. 2018 annual median wage for general dentists 

a. Column S

b. Field: Dollar ($) amount 

c. Source: Bureau of Labor Statistics, Occupational Employment and Wage Statistics, State (May 

2018), https://www.bls.gov/oes/tables.htm.

78 National Council on Disability
19. Buy-in for working people with disabilities

a. Column T

b. Fields: Yes, No

c. Source: M. Musumeci, P. Chidambaram, and M. O’Malley Watts, Appendix Table 1: State 

Adoption of Key Option Pathways to Full Medicaid Eligibility Based on Old Age or Disability, 

2018 (Washington, DC: Kaiser Family Foundation, 2020), https://www.kff.org/report-section

/medicaid-financial-eligibility-for-seniors-and-people-with-disabilities-findings-from-a-50-state

-survey-appendix-tables/.

d. Explanation: Many state Medicaid programs allow individuals with disabilities who are under 

the age of sixty-five years who earn more than the allowable amount under Medicaid to 

purchase Medicaid coverage by paying premiums (https://www.dol.gov/sites/dolgov/files/odep

/topics/medicaidbuyinqaf.pdf). These programs allow individuals with disabilities to work and 

retain Medicaid health benefits. Many states will temporarily allow recipients to stay on the 

program after losing employment (e.g., for six months), allowing participants in this Medicaid 

option to retain Medicaid while they reapply for Supplemental Security Income or seek other 

employment. In states with buy-in programs, more people with disabilities have opportunities 

to be covered by state Medicaid programs.

Waivers

Detailed waiver review methodology 

NCD reviewed waiver programs only for states that were not classified as having comprehensive 

adult dental benefits in 2018. For 1915 waivers, NCD reviewed approved waiver applications available 

on the CMS website.141 However, 1115 waivers did not follow a standardized format; therefore, some 

columns have missing fields. For information about 1115 waivers, several documents available on the 

CMS website were reviewed, including quarterly reports, CMS approval letters, and fact sheets. Only 

the most recent versions of waiver materials listed on CMS were reviewed, as prior versions of waiver 

materials were not consistently available across all states. NCD also cross-checked CMS information 

with information from MSDA survey results from 2019. When MSDA data indicated that a state has 

dental coverage via waivers (column B), NCD expanded the search of the state’s waivers to include 

pending waiver applications (e.g., Utah). NCD did not review expired or terminated waivers. The 1915 

waiver applications also contain standardized information about the number of people the waiver will 

serve per year of the approval period and the cap on the monetary amount they will spend on dental 

services, so these were collected as well from waiver reviews for 1915 waiver programs.

20. MSDA: Dental programs operating under Medicaid waiver

a. Column B

b. Fields: 1115, 1915(b), 1915(c)

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 79
c. Source: Medicaid/Medicare/CHIP Services Dental Association (MSDA), 2019 National: Policy. 

Dental Programs Operating Under Medicaid Waiver (2019), accessed October 2020, https://

www.msdanationalprofile.com/profiles/2019/national/all/policy/medical-waivers (free account 

creation required to access).

d. Explanation: States self-reported this measure and indicated whether the waiver was 1115, 

1915(b), 1915(c), combination, or left blank. 

21. Waiver name

a. Column C

22. Waiver type 

a. Column D

b. Fields: For example, 1115, 1915(b), 1915(c), etc.

23. Does the waiver provide dental coverage for adults with I/DD beyond that covered for the general 

adult population?

a. Column E

b. Fields: Y/N

c. Note: Maryland provides dental care for adults ages twenty-one to sixty-four years who are dually 

eligible for Medicaid and Medicare through a pilot dental program. This is not specific to adults with 

I/DD and, thereby, was not counted as a waiver program for 2018 T-MSIS analysis. The fee schedule 

for this program is available at https://health.maryland.gov/mmcp/Documents/Overview.pdf.

24. Does the waiver provide dental coverage for the general adult population?

a. Column F

b. Fields: Y/N

25. Was the waiver in effect in 2018?

a. Column G

b. Fields: Y/N

c. Marked as Y if 2018 fell between the waiver approval date of initial application and the waiver 

expiration date. This was used in analysis of 2018 T-MSIS data.

26. Initial application/approval date

a. Column H

b. On CMS website

27. Date the latest approved/pending application was effective

a. Column I

b. On CMS website

80 National Council on Disability
28. Waiver expiration date

a. Column J

b. On CMS website

29. Approval period

a. Column K

b. For 1915 waivers, this information is in Section 1C of approved waiver applications.

30. Number of people served by the waiver

a. Column L

b. For 1915 waivers, this information is in Appendixes B and J of approved waiver applications.

31. Cost cap per waiver participant per year for dental services covered in the waiver plan

a. Column M

b. For 1915 waivers, this information is usually in Appendix C of approved waiver applications.

32. Dental services covered under the waiver

a. Column N

b. For 1915 waivers, this information is usually in Appendix C of approved waiver applications.

33. Populations granted expanded dental benefits under the waiver

a. Column O

b. For 1915 waivers, this information is usually in the waiver description and Appendix B of 

approved waiver applications.

34. Other notes and resources

a. Column P

Detailed steps for determining whether a waiver covered dental benefits for the general adult 

population or the adult population with I/DD were as follows: 

1. If at least one term listed under items a and b appeared in the waiver text, they were flagged for 

further review:

a. “Intellectual disability”/“Developmental disability”/“Mental retardation”/“Autism”

i. In 1915 waiver applications/renewals, there is usually a grid of populations that are 

the “target group” for the waiver in Appendix B (covered populations) or sometimes 

populations included/excluded are listed in Part I: E, “Populations Included in Waiver.”

b. “Oral health” (space before “oral”)/“Dental”/“Dentistry”

i. Also in 1915 waiver applications, Appendix C (covered services) contains information about 

any benefits included in the waiver program. 

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 81
2. If oral health and I/DD search terms were present, the approved waiver application materials were 

reviewed in depth for the above information.

3. If the waiver specifically named the I/DD population as eligible for oral health benefits under the 

waiver, column E was marked as “Y”, as providing the I/DD population with additional dental 

benefits. Otherwise, the field was marked “N”. Sometimes I/DD populations are specifically 

excluded in some waivers (e.g., Indiana), which would also require “N” within this column.

4. The waiver was marked as “Y” in column F only if the waiver extended oral health benefits 

beyond the state plan for the general adult population.

Medicaid Fee-for-Service Fee Schedules

1. NASHP classification of adult dental benefit coverage in Medicaid

a. Column B

b. Source: National Academy for State Health Policy, State Medicaid Coverage of Dental Services 

for the General Adult and Pregnant Populations, accessed September 22, 2021, https://

www.nashp.org/state-medicaid-coverage-of-dental-services-for-general-adult-and-pregnant

-populations/.

2. Date of input into spreadsheet

a. Column C

3. Date of fee schedule

a. Column D

4. Medicaid maximum fee for service fees for twenty-six relevant CDT codes for adult dental services 

a. Columns E–AC

b. Frequency limitations for the below relevant twenty-six CDT codes

c. Columns AD–BB

5. Was a separate fee schedule for individuals with intellectual disabilities found?

a. Column BC

b. While this was not specifically sought for by NCD researchers, it was recorded when 

researchers came across a separate fee schedule for individuals with I/DD, usually only 

available if the state has a waiver granting additional or expanded dental benefits to adults 

with I/DD in the state.

6. Notes

a. Column BD

b. Provides some clarity on fee schedule or additional information about fees within the sheet

82 National Council on Disability
Methodological notes on fee schedules

■ Fees are for FFS dental benefits to the general adult population unless otherwise noted. It was 

assumed that for states where the fee schedule was not clear about whether the rates were for 

children or adults that the rates were the same for both populations. 

■ States without a Medicaid dental benefit for the general adult population do not publish a Medicaid 

fee schedule for dental services, and the FFS are listed as n/a or not applicable in these states.

■ Frequency limitations related to relevant CDT codes were not found for New Mexico, Oregon, 

Tennessee, or Virginia. 

■ Actual frequency limitations and fees may vary depending on whether dental services are 

delivered via managed care organizations and may differ between managed care organizations, if 

there are multiple.

Medicaid Fee Schedule and Frequency Sources

1. Link to fee schedule

a. Column B

b. The latest version of the Medicaid fee schedule was referenced. 

2. Link to provider manual or other frequency limitation source

a. Column C

b. Frequency limitations were not always stated within the fee schedule; thus, sources for the 

frequency limitations often came from Medicaid dental provider manuals, state statutes, or 

state websites.

3. Notes

a. Column D

b. Provides additional information about methods and approach

CDT Code Descriptors

This tab contains the relevant codes and descriptions of CDT codes for which fees and frequency 

limitations were collected in the Medicaid fee-for-service fee schedules. Codes that begin with D0 are 

for diagnostic services, D1 = preventive, D2 = endodontics, D4 = periodontics, and D9 = adjunctive 

general services.

1. D0120 - Periodic oral evaluation—established patient

2. D0140 - Limited oral evaluation—problem focused 

3. D0150 - Comprehensive oral evaluation—new or established patient 

4. D0220 - Intraoral—periapical first radiographic image

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 83
5. D0230 - Intraoral—periapical each additional radiographic image 

6. D0274 - Bitewings—four radiographic images

7. D1110 - Prophylaxis—adult

8. D1206 - Topical application of fluoride varnish 

9. D1208 - Topical application of fluoride—excluding varnish

10. D1310 - Nutritional counseling for control of dental disease

11. D1330 - Oral hygiene instructions

12. D1354 - Interim caries arresting medicament application—per tooth 

13. D1355 - Caries preventive medicament application—per tooth

14. D2391 - Resin-based composite—one surface, posterior

15. D2392 - Resin-based composite—two surfaces, posterior

16. D4910 - Periodontal maintenance 

17. D9410 - House/extended care facility call

18. D9430 - Office visit for observation (during regularly scheduled hours)—no other services 

performed

19. D9920 - Behavior management, by report

20. D9991 - Dental case management—addressing appointment compliance barriers

21. D9992 - Dental case management—care coordination

22. D9993 - Dental case management—motivational interviewing

23. D9994 - Dental case management—patient education to improve oral health literacy

24. D9995 - Teledentistry—synchronous; real-time encounter

25. D9996 - Teledentistry—asynchronous; information stored and forwarded to dentist for subsequent 

review

26. D9997 - Dental case management—patients with special health care needs

Source: Current Dental Terminology (Chicago: American Dental Association, 2021).

84 National Council on Disability
Appendix D: ICD-10 Diagnosis Codes for Autism 

Spectrum Disorder, Intellectual Disability and 

Related Conditions, Cerebral Palsy, and Other 

Developmental Delays

The Transformed Medicaid Statistical Information System (T-MSIS) sample consisted of adults with 

intellectual and developmental disabilities (I/DD). If a claim in T-MSIS had one or more of the following 

International Classification of Diseases (ICD) codes, the person associated with the claim was 

considered someone with an I/DD.

E78.71, E78.72 Barth syndro

F70.0, F70.1, F70.8, F70.9 Mild mental retarda

F71, F71.0, F71.1, F71.

F71.

Moderate mental retardation

F72, F72.0, F72.1, F72.

F72.

Severe mental retardation

F73, F73.0, F73.1, F73.

F73.

Profound mental retardation

F78, F78.0, F78.1, F78.

F78.

Other mental retardation

F79, F79.0, F79.1, F79.

F79.

Unspecified mental retardation

F81.9 Developmental disorder unspecified, scholastic skill

F82 Specific developmental disorder of motor function

F84.0 Autistic disorde

F84.1 Atypical autis

F84.2 Rett’s syndrom

F84.3, F84.4 Pervasive developmental disord

F84.5 Asperger’s syndrom

F84.8 Other pervasive developmental dela

F84.9 Pervasive developmental delay not otherwise specifie

F88 Other disorders of psychological development

F89 Unspecified disorder of psychological development

(continued)

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 85
G80.0, G80.1, G80.

G80.3, G80.4, G80.8, G

Cerebral palsy

P04.3 Fetal alcohol syndrom

Q86.0 Congenital malformation syndrome due to exogenous factor

Q86.1 Fetal hydantoin syndrome (primarily physical, may include mild

developmental disability)

Q86.2 Dysmorphism due to warfari

Q86.8 Other congenital malformation, unknown caus

Q87.0 Congenital malformation primarily affecting the fac

Q87.1 Other specified congenital malformation syndromes affecting

multiple systems

Q87.11 Prader-Willi syndrom

Q87.19, Q87.2, Q87.3, Q87

Q87.

Other specified congenital malformation syndromes affecting 

multiple systems

Q87.81 Alport syndrome (may include ID

Q87.89 Other specified congenital malformation syndromes, not

elsewhere classified

Q89.7 Multiple congenital malformations, not otherwise specifie

Q89.8 Other specified congenital malformation syndromes affecting

multiple systems

Q90.0, Q90.1, Q90.2, Q

Down’s syndrome

Q91.0, Q91.1, Q91.2, Q91

Q91.4, Q91.5, Q91.6, Q

Edward’s syndrome and Patau’s syndrome

Q92.0, Q92.1, Q92.

Q92.5, Q92.7, Q92.8, Q

Trisomy

Q92.61 Marker chromosomes in normal individua

Q92.62 Marker chromosomes in abnormal individua

Q93.0, Q93.1, Q93.

Q93.3, Q93.4, Q93.

Q93.51, Q93.8, Q93.

Q93.2, Q93.529, Q93.

Q93.7, Q93.8, Q93.8

Q93.88, Q93.89, Q9

Monosomies and deletions from autosomes, not elsewhere 

classified

Q95.2 Balanced autosomal rearrangement in abnormal individua

Q95.3 Balanced sex autosomal rearrangement in abnormal individua

Q99.2 Fragile 

86 National Council on Disability
Appendix E: Details About T-MSIS Sample

The table displays the number of people in the 2018 Transformed Medicaid Statistical Information 

System (T-MSIS) population and for the T-MSIS sample analyzed for this study. Column A displays the 

number of adults with intellectual and developmental disabilities (I/DD) in the sample analyzed for 

this study. Adults with I/DD were randomly selected within each state from the population of adults 

with I/DD identified in T-MSIS. Column B displays the number of adults with I/DD in the 2018 T-MSIS 

population. Column C is the ratio of column A to column B, converted into a percentage. Column 

C shows the percentage of adults with I/DD in each states’ T-MSIS population who were randomly 

selected for the T-MSIS sample for this study. Column D shows the percentage of all adults, by state, in 

the T-MSIS population who were identified as having an I/DD in 2018. 

State A. Adults with 

I/DD in sample

B. Adults with 

I/DD in population

C. Percent 

of sample 

in population

D. Percent of Medicaid 

recipients in each state 

who had an I/DD

Alabama 13,622 13,623 100 3.6

Alaska 2,558 2,558 100 2.4

Arizona 16,915 21,145 80 1.7

Arkansas 12,562 12,564 100 2.1

California 72,543 145,095 50 1.5

Colorado 11,872 11,872 100 1.2

Connecticut 13,661 17,078 80 2.8

Delaware 4,323 4,323 100 2.7

District of 

Columbia 

3,106 3,107 100 1.5

Florida 27,530 34,413 80 1.9

Georgia 20,033 25,041 80 2.8

Hawaii 3,489 3,489 100 1.4

Idaho 6,960 6,960 100 5.8

Illinois 34,602 43,262 80 2.3

Indiana 15,150 18,937 80 1.9

Iowa 13,161 13,167 100 3.2

Kansas 7,374 7,374 100 4.7

(continued)

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 87
State A. Adults with 

I/DD in sample

B. Adults with 

I/DD in population

C. Percent 

of sample 

in population

D. Percent of Medicaid 

recipients in each state 

who had an I/DD

Kentucky 14,817 18,524 80 1.9

Louisiana 13,849 17,311 80 1.7

Maine 8,818 8,818 100 5.3

Maryland 20,260 25,326 80 2.9

Massachusetts 30,267 37,835 80 2.9

Michigan 34,658 43,322 80 2.5

Minnesota 26,576 33,227 80 4.8

Mississippi 11,304 11,305 100 3.5

Missouri 20,574 25,720 80 5.3

Montana 3,149 3,150 100 1.8

Nebraska 3,618 3,619 100 3.5

New Hampshire 5,554 5,555 100 4.0

New Jersey 24,527 30,667 80 2.7

New Mexico 7,086 7,087 100 1.3

New York 53,855 107,716 50 2.5

Nevada 6,288 6,288 100 1.3

North Carolina 26,363 32,956 80 3.4

North Dakota 2,342 2,342 100 6.3

Ohio 38,885 64,814 60 3.3

Oklahoma 10,966 10,966 100 3.1

Oregon 10,526 10,526 100 1.4

Pennsylvania 38,033 63,397 60 3.1

Rhode Island 5,380 5,381 100 2.4

South Carolina 13,186 16,482 80 3.1

South Dakota 3,683 3,684 100 7.9

Tennessee 16,114 20,144 80 2.4

Texas 33,230 55,389 60 3.5

Utah 7,600 7,600 100 5.1

Vermont 4,362 4,362 100 4.3

Virginia 17,816 22,270 80 4.5

Washington 12,559 15,700 80 1.3

West Virginia 7,522 7,522 100 1.9

Wisconsin 14,632 18,291 80 2.5

Wyoming 2,960 2,960 100 11.0

88 National Council on Disability
Appendix F: Developmental Disabilities Agency Leader 

Questionnaire Responses About Barriers to Oral Health

The following table shows which states responded to the Developmental Disability Agency 

Questionnaire and the types of issues they cited within the questionnaire as barriers to oral health care 

for adults with intellectual and developmental disabilities (I/DD) in their state. The original question text 

was: “Q12 From your perspective, what are the main barriers to oral health care for adults with I/DD in 

your state?”

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 89
State Responded Lack of Transportation Medicaid Coverage Limits Lack of Funds

Lack of 

Providers 

Trained to 

Work with 

Patients 

with I/DD

Lack of 

Providers 

Who 

Accept 

Medicaid

Low 

Reimbursement 

Rate

Specialized 

Care Accessibility Psychosocial Barriers 

AL N — — — — — — — — —AK Y — — — — — — — — —AZ Y Y Y — — — — Y — YAR N — — — — — — — — —CA N — — — — — — — — —CO Y — — — Y Y — — — —CT Y — — — — — — Y — —DE N — — — — — — — — —DC Y — — — — — — Y — YFL Y — — — Y — — Y — —GA Y — Y — — — — — — —HI Y — Y — Y — — Y — —ID Y — — — — — Y Y — —IL N — — — — — — — — —IN N — — — — — — — — —IA Y Y — — — Y — Y — —KS N — — — — — — — — —KY N — — — — — — — — —LA Y — — — Y — Y Y — —ME N — — — — — — — — —MD Y — — Y Y — — — — —MA N — — — — — — — — —MI N — — — — — — — — —MN N — — — — — — — — —

90 National Council on Disability
MS

N

—

—

—

—

—

—

—

—

—

MO

Y

—

—

—

—

Y

—

—

—

—

MT

N

—

—

—

—

—

—

—

—

—

NE

Y

—

—

—

—

—

—

—

—

Y

NV 

Y

—

Y

—

Y

Y

—

—

—

—

NH 

Y

—

—

Y

—

—

—

—

—

—

NJ 

Y

—

—

—

—

Y

—

—

—

—

NM 

N

—

—

—

—

—

—

—

—

—

NY 

Y

—

—

—

Y

Y

—

—

—

—

NC 

Y

—

—

—

Y

—

—

—

—

—

ND

N

—

—

—

—

—

—

—

—

—

OH

Y

—

—

—

Y

—

—

—

—

—

OK

Y

—

—

—

Y

—

Y

—

—

—

OR 

N

—

—

—

—

—

—

—

—

—

PA

Y

—

—

—

Y

—

—

Y

—

—

RI 

Y

—

Y

—

Y

Y

—

—

—

—

SC 

N

—

—

—

—

—

—

—

—

—

SD 

N

—

—

—

—

—

—

—

—

—

TN

Y

—

—

—

—

—

—

—

—

Y

TX 

N

—

—

—

—

—

—

—

—

—

UT

N

—

—

—

—

—

—

—

—

—

VT

Y

—

Y

Y

—

Y

—

Y

—

—

VA 

Y

—

—

—

Y

—

—

—

Y

Y

WA 

Y

—

—

—

—

Y

Y

—

—

—

WV 

Y

—

—

—

—

—

—

Y

—

—

WI 

N

—

—

—

—

—

—

—

—

—

WY

N

—

—

—

—

—

—

—

—

—

Total 28*

2

6

3 13

9

4 11 1 5

*Incomplete responses not counted.

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 91
92 National Council on Disability
Endnotes

1 U.S. Department of Health and Human Services, National Institutes of Health, National Institute of Dental 

and Craniofacial Research (NIDCR), Oral Health in America: A Report of the Surgeon General (Rockville, MD: 

U.S. Department of Health and Human Services, 2000), https://www.nidcr.nih.gov/sites/default/files/2017-10

/hck1ocv.%40www.surgeon.fullrpt.pdf.

2 As a twenty-year follow-up to the 2000 seminal Oral Health in America: A Report of the Surgeon General, 

NIDCR will release the new report Oral Health in America: Advances and Challenges in the fall of 2021. https://

www.nidcr.nih.gov/news-events/nidcr-news/2021/nidcr-director-oral-health-in-america. The report release was 

pending during the drafting of this report.

3 My Smile Matters (Albertson, NY: The Viscardi Center, Project Accessible Oral Health, 2020).

4 P.L. Anders and E.L. Davis, “Oral Health of Patients with Intellectual Disabilities: A Systematic Review,” Special 

Care in Dentistry 30, no. 3 (2010): 110–17.

5 L.V. Buda, “Ensuring Maintenance of Oral Hygiene in Persons with Special Needs,” Dental Clinics of North 

America 60 (2016): 593–604.

6 J.P. Morgan, P.M. Minihan, P.C. Stark, M.D. Finkelman, K.E. Yantsides, A. Park, C.J. Nobles, W. Tao, and A. 

Must, “The Oral Health Status of 4,732 Adults with Intellectual and Developmental Disabilities,” Journal of the 

American Dental Association 143, no. 8 (2012): 838–46.

7 C.A. Okoro, N.D. Hollis, A.C. Cyrus, and S. Griffin-Black, “Prevalence of Disabilities and Health Care Access by 

Disability Status and Type Among Adults—United States, 2016,” Morbidity and Mortality Weekly Report 67, 

no. 32 (2018): 882–87, http://dx.doi.org/10.15585/mmwr.mm6732a3.

8 How Many People with Intellectual or Developmental Disabilities Live in the United States? (Minneapolis: 

University of Minnesota, Residential Information Systems Project [RISP], Research and Training Center on 

Community Living, Institute on Community Integration, 2020), https://risp.umn.edu.

9 L.L. Anderson, S.A. Larson, S. Mapel Lentz, and J. Hall-Lande, “A Systematic Review of U.S. Studies on 

the Prevalence of Intellectual or Developmental Disabilities Since 2000,” Intellectual and Developmental 

Disabilities 57, no. 50 (2019): 421–38, https://doi.org/10.1352/1934-9556-57.5.421.

10 U.S. Department of Health and Human Services, National Institutes of Health, National Institute of Child 

Health and Human Development. About Intellectual and Developmental Disabilities (IDDs) (Rockville, MD: 

NICHD: Office of Communications, 2021), https://www.nichd.nih.gov/health/topics/idds/conditioninfo/default.

11 G.A. Livermore, M. Bardos, and K. Katz, “Supplemental Security Income and Social Security Insurance 

Beneficiaries with Intellectual Disability,” Social Security Bulletin 77, no. 1 (2017), https://www.ssa.gov/policy

/docs/ssb/v77n1/v77n1p17.html.

12 R. Rautemaa, A. Lauhio, M.P. Cullinan, and G.J. Seymour, “Oral Infections and Systemic Disease—An 

Emerging Problem in Medicine,” Clinical Microbiology and Infection 13, no. 11 (2007): 1041–47.

13 D.M. Rapalo, J.L. Davis, P. Burtner, and E.D. Bouldin, “Cost as a barrier to dental care among people with 

disabilities: A report from the Florida behavioral risk factor surveillance system,” Special Care in Dentistry 30, 

no. 4 (2010): 133–39.

14 U.S. Department of Health and Human Services, National Institutes of Health, National Institute of Dental 

and Craniofacial Research, Oral Health in America: A Report of the Surgeon General (Rockville, MD: U.S. 

Department of Health and Human Services, 2000), https://www.nidcr.nih.gov/sites/default/files/2017-10

/hck1ocv.%40www.surgeon.fullrpt.pdf.

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 93
15 Morgan et al., “The Oral Health Status of 4,732 Adults,” 838–46.

16 H.S. Kaye, “Disability-related Disparities in Access to Health Care Before (2008–2010) and After (2015–2017) 

the Affordable Care Act,” American Journal of Public Health 109 (2019): 1015–21, https://doi.org/10.2105

/AJPH.2019.305056.

17 W. Horner-Johnson and K. Dobbertin, “Dental Insurance and Dental Care Among Working-age Adults: 

Differences by Type and Complexity of Disability,” Journal of Public Health Dentistry 76, no. 4 (2016): 330–39, 

https://doi.org/10.1111/jphd.12160.

18 W. Horner-Johnson, K. Dobbertin, and E. Beilstein-Wedel, “Disparities in Dental Care Associated with 

Disability and Race and Ethnicity,” Journal of the American Dental Association 146, no. 6 (2015): 366–74, 

https://doi.org/10.1016/j.adaj.2015.01.024.

19 Z. Bayarsikhan, S. Cruz, J. Neff, and D. Chi, “Transitioning from Pediatric Care to Adult Care for Adolescents 

with Special Health Care Needs: Dentist Perspectives (Part 2),” Pediatric Dentistry 37, no. 5 (2015): 447–51.

20 M.J. Davis, “Issues in Access to Oral Health Care for Special Care Patients,” Dental Clinics of North America

53 (2009): 169–81.

21 H. Koball, K. Ahluwalia, S. Setty, and C. Fosse, Addressing Barriers to Oral Health and Health Care for Adults 

with Intellectual and Developmental Disabilities in New Jersey, Five-Year Plan. (New York: National Center for 

Children in Poverty, 2020), https://www.nccp.org/wp-content/uploads/2020/07/1229.pdf.

22 A. Reichard and H.R. Turnbull, “Perspectives of Physicians, Families, and Case Managers Concerning Access 

to Health Care by Individuals with Developmental Disabilities,” Mental Retardation, 42 (2004): 181–94, https://

doi.org/10.1352/0047-6765(2004)42<181:popfac>2.0.co;2.

23 Still in the Shadows with Their Future Uncertain: A Report on Family and Individual Needs for Disability 

Supports (FINDS), 2011 (Washington, DC: The Arc, 2011), https://thearc.org/wp-content/uploads/forchapters

/FINDS_Report_811a.pdf.

24 Kaye, “Disability-Related Disparities in Access to Health Care,” 1015–21.

25 Centers for Medicare and Medicaid Services (CMS), Historical National Health Expenditure Data: Table 12: 

Dental Services Expenditures; Levels, Percent Change, and Percent Distribution, by Source of Funds: Selected 

Calendar Years 1970–2019 (Washington, DC: CMS, 2020), https://www.cms.gov/Research-Statistics-Data

-and-Systems/Statistics-Trends-and-Reports/NationalHealthExpendData/NationalHealthAccountsHistorical.

26 Centers for Medicare and Medicaid Services (CMS), Dental Care (Washington, DC: CMS), accessed January 6, 

2022, https://www.medicaid.gov/medicaid/benefits/dental-care/index.html.

27 The CHIP program provides publicly subsidized low-cost health insurance to low-income children and families 

who have incomes too high to qualify for Medicaid.

28 See Medicaid Oral Health Policy Database and Table 2 in this report.

29 In CMS’s guidance for states regarding the Medicaid Managed Care Contract, it is stated that the “CMS 

does not require that state Medicaid agencies make their contracts with manage care organizations publicly 

available.” Centers for Medicare and Medicaid Services. The State Guide to CMS Criteria for Medicaid 

Managed Care Contract Review and Approval (Washington, DC: CMS, 2017), https://www.medicaid.gov

/sites/default/files/2020-02/mce-checklist-state-user-guide.pdf. Additionally, the November 13, 2020, Federal 

Register notice of final rule, Medicaid Program; Medicaid and Children’s Health Insurance (CHIP) Program, 

states“. . . some states and managed care plans have expressed concern about, and been hesitant to 

submit, certain financial data—namely, the allowed amount and the paid amount. Some managed care 

plans consider this information to be proprietary and inappropriate for public disclosure. We explained in 

the proposed rule that we understand their concern but emphasize the importance of these data for proper 

monitoring and administration of the Medicaid program, particularly for capitation rate setting and review, 

financial management, and encounter data analysis.” Centers for Medicare and Medicaid Services, “Medicaid 

Program; Medicaid and Children’s Health Insurance Program (CHIP) Managed Care,” Federal Register 85 FR 

72754 (November 13, 2020): 72754–844, https://www.federalregister.gov/documents/2020/11/13/2020-24758

/medicaid-program-medicaid-and-childrens-health-insurance-program-chip-managed-care.

94 National Council on Disability
30 E. Hinton, R. Rudowitz, L. Stolyar, and N. Singer, 10 Things to Know About Medicaid Managed Care

(Washington, DC: Kaiser Family Foundation, 2020), https://www.kff.org/medicaid/issue-brief/10-things

-to-know-about-medicaid-managed-care/.

31 Total Medicaid MCO Enrollment (Washington, DC: Kaiser Family Foundation, 2018), https://www.kff.org/other

/state-indicator/total-medicaid-mco-enrollment/?currentTimeframe=0&sortModel=%7B%22colId%22:%22

Location%22,%22sort%22:%22asc%22%7D.

32 Mathematica, Medicaid Managed Care Enrollment and Program Characteristics (Washington, DC: Centers for 

Medicare and Medicaid Services, 2020), https://www.medicaid.gov/state-overviews/scorecard/how-states

-deliver-care-medicaid/index.html.

33 Hinton et al., 10 Things to Know About, 2020.

34 N. Gupta, C. Yarbrough, M. Vujicic, A. Blatz, and B. Harrison,, Medicaid Fee-For-Service Reimbursement Rates 

for Child and Adult Dental Care Services for All States, 2016 (Chicago: Health Policy Institute, American Dental 

Association, 2017), http://www.ada.org/~/media/ADA/Science%20and%20Research/HPI/Files/HPIBrief

_0417_1.pdf.

35 Gupta et al., Medicaid Fee-For-Service Reimbursement, 2017.

36 American Dental Association, “Snapshots of American Dentistry,” 2020. https://www.ada.org/publications

/ada-news/2020/september/snap-september-21-2020.

37 Gupta et al., Medicaid Fee-For-Service Reimbursement, 2017.

38 Emergency Department Visits for Dental Conditions—A Snapshot (Chicago: Health Policy Institute, American 

Dental Association, 2019), https://www.ada.org/-/media/project/ada-organization/ada/ada-org/files

/resources/research/hpi/hpigraphic_0420_1.pdf?rev=2912d9465aef4958882a485ae5f00665&hash

=4B00090BAF2BC8FCBEC83FE9B191F13B.

39 Report published by Agency for Healthcare Research and Quality (AHRQ). P.L. Owens, R.J. Manski, and 

A.J. Weiss, Emergency Department Visits Involving Dental Conditions, 2018, Statistical Brief 280 (Rockville, 

MD: AHRQ, 2020), https://hcup-us.ahrq.gov/reports/statbriefs/sb280-Dental-ED-Visits-2018.pdf.

40 M.W. Seitz, S. Listl, A. Bartols, I. Schubert, K. Blaschke, C. Haux, and M.M. Van Der Zande, “Current 

Knowledge on Correlations Between Highly Prevalent Dental Conditions and Chronic Diseases: An Umbrella 

Review,” Preventing Chronic Disease 16 (2019) 180641. http://dx.doi.org/10.5888/pcd16.180641.

41 K. Nasseh, M. Vujicic, and M. Glick, “The Relationship Between Periodontal Interventions and Healthcare 

Costs and Utilization,” Health Economics 26, no. 4 (2017): 519–27, https://doi.org/10.1002/hec.3316.

42 M. Vujicic, R. Starkel, and B. Harrison, Estimating the Cost of Introducing Comprehensive Adult Medicaid 

Dental Benefits in Virginia (Chicago: Health Policy Institute, American Dental Association, 2020), https://

vahealthcatalyst.org/wp-content/uploads/2020/02/HPI-Report-with-Intro-Letter_Update.pdf.

43 K.D. Smith, Implementing a Medicaid Dental Benefit for Adults with Disabilities Can Yield Significant Cost 

Savings (Austin: Texas Health Institute, 2021).

44 M. Vujicic, R. Starr, D. Fujii, R. Starkel, and B. Harrison, Estimating the Cost of Introducing Comprehensive 

Adult Medicaid Dental Benefits in Hawaii (Chicago: Health Policy Institute, American Dental Association, 

2020), https://www.ada.org/-/media/project/ada-organization/ada/ada-org/files/resources/research/hpi

/hpibrief_0220_1.pdf.

45 J. Tilly, Oral Health’s Relationship to Disease and Options for Expanding Services for Older Adults and Adults 

Who Have Disabilities (Washington, DC: U.S. Department of Health and Human Services, Administration for 

Community Living, Center for Policy and Evaluation, 2016).

46 Implementing a Dental Benefit for Adults with Disabilities Can Yield Significant Cost Savings (Austin: Texas 

Health Institute, 2021), https://www.texashealthinstitute.org/uploads/3/9/5/2/39521365/oral_health_brief-

_implementing_a_medicaid_dental_benefit_for_adults_with_disabilities_digital.pdf.

47 D. Alexander and M. Schnell, The Impacts of Physician Payments on Patient Access, Use, and Health

(Cambridge, MA: National Bureau of Economic Research, 2019), https://www.nber.org/system/files

/working_papers/w26095/w26095.pdf. M. Candon, S. Zuckerman, D. Wissoker, B. Saloner, G.M. Kenney, 

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 95
K. Rhodes, and D. Polsky, “Declining Medicaid Fees and Primary Care Appointment Availability for New Medicaid 

Patients,” JAMA Internal Medicine, 178, no. 1 (2018): 145, https://doi.org/10.1001/jamainternmed.2017.6302; 

California Legislature’s Nonpartisan Fiscal and Policy Advisor, Improving Access to Dental Services for Individuals 

with Developmental Disabilities (Sacramento: Legislative Analyst’s Office, 2018), https://lao.ca.gov

/Publications/Report/3884.

48 Impact of Increased Dental Reimbursement Rates on Husky A-Insured Children, 2006–2011 (Hartford: 

Connecticut Health Foundation, 2013), https://www.cthealth.org/publication/impact-increased-dental

-reimbursement-rates-husky-a-insured-children-2006-2011/.

49 D.M. Berwick, T.W. Nolan, and J. Whittington, “The Triple Aim: Care, Health, and Cost,” Health Affairs

(Millwood), 27, no. 3 (2008): 759–69, https://doi.org/10.1377/hlthaff.27.3.759.

50 J. Bershadsky and R. L. Kane, “Place of Residence Affects Routine Dental Care in the Intellectually and 

Developmentally Disabled Adult Population on Medicaid,” Health Services Research 45, no. 5 (2010): 1376–89, 

https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1475-6773.2010.01131.x.

51 J.M. Chalmers, R.A. Kuthy, E.T. Momany, D.L. Chi, R.A. Bacon, S.D. Lindgren, N.M. Askelson, and P.C. Damiano, 

“Dental Utilization by Adult Medicaid Enrollees Who Have Indicators of Intellectual and Developmental 

Disabilities (IDD),” Special Care in Dentistry 31, no. 1 (2010): 18–26.

52 U.S. Department of Health and Human Services, National Institutes of Health, National Institute of Dental 

and Craniofacial Research (NIDCR), Oral Health in America: A Report of the Surgeon General (Rockville, MD: 

U.S. Department of Health and Human Services, 2000), https://www.nidcr.nih.gov/sites/default/files/2017-10

/hck1ocv.%40www.surgeon.fullrpt.pdf.

53 National Academy for State Health Policy, State Medicaid Coverage of Dental Services for the General Adult 

and Pregnant Populations, accessed September 22, 2021, https://www.nashp.org/state-medicaid-coverage

-of-dental-services-for-general-adult-and-pregnant-populations/.

54 Healthy Mouths: Why They Matter for Adults and State Budgets (Boston: CareQuest Institute for Oral Health, 

2020), https://www.carequest.org/system/files/CareQuest-Institute-Health-Mouths-Why-They-Matter-for

-Adults-and-State-Budgets-Brief.pdf.

55 U.S. Department of Health and Human Services, Office of Inspector General, Data on Medicaid Managed 

Care Payments to Providers Are Incomplete and Inaccurate (Washington, DC: U.S. Department of Health 

and Human Services, March 2021), https://oig.hhs.gov/oei/reports/OEI-02-19-00180.pdf.

56 CMS provided documentation to the project team indicating that the T-MSIS dataset included forty-five million 

adults in 2018, which represents the number of adults who received Medicaid in 2018. Appendix E provides 

the sample information by state.

57 Action for Dental Health Act of 2018, H.R. 2422, 115th Cong. (2018), https://www.govtrack.us/congress/bills

/115/hr2422/summary.

58 Action for Dental Health Act of 2018, H.R. 2422, 115th Cong. (2018), https://www.govtrack.us/congress/bills

/115/hr2422/summary.

59 Initiatives to reduce ED visits for dental visits include multiple approaches to redirecting patients from the 

ED to dental offices. These include expanding access to care in dental offices and connecting EDs to dental 

offices. For more information, see Richard Hermann, “Action for Dental Health: Dentists Making a Difference,” 

New York State Dental Journal 85, no. 2 (2019).

60 For more information, see Richard Hermann, “Action for Dental Health: Dentists Making a Difference,” 

New York State Dental Journal 85, no. 2 (2019). https://www.proquest.com/openview/ca2f5a438b667ce690db

c78e8790083d/1?pq-origsite=gscholar&cbl=41679.

61 J. Garvin, Action for Dental Health Act Is Now Law (Chicago: American Dental Association, 2018), https://

www.wsda.org/news/blog/2018/12/12/action-for-dental-health-act-is-now-law.

62 PR Newswire, “NCD Commends ADA Code of Professional Conduct Revisions Facilitating Access for 

Patients with Disabilities,” 2019, accessed January 5, 2021. https://www.prnewswire.com/news-releases

/ncd-commends-ada-code-of-professional-conduct-revisions-facilitating-access-for-patients-with-disabilities

-300780404.html.

96 National Council on Disability
63 Current Accreditation Standards (Chicago: Commission on Dental Accreditation, 2019), https://coda.ada.org

/en/current-accreditation-standards.

64 American Dental Association, Code on Dental Procedures and Nomenclature (CDT Code), accessed 

September 29, 2021, https://www.ada.org/en/publications/cdt#:~:text=The%20purpose%20of%20the

%20CDT,populate%20an%20Electronic%20Health%20Record.

65 Gupta et al. Medicaid Fee-for-Service Reimbursement, 2017.

66 Impact of Increased Dental Reimbursement Rates on Husky A-Insured Children, 2006–2011 (Hartford: 

Connecticut Health Foundation, 2013), https://www.cthealth.org/publication/impact-increased-dental

-reimbursement-rates-husky-a-insured-children-2006-2011/.

67 The capitation rate is the set per member, per month amount that state Medicaid programs pay to MCOs for 

Medicaid services.

68 D. Alexander and M. Schnell, The Impacts of Physician Payments on Patient Access, Use, and Health

(Cambridge, MA: National Bureau of Economic Research, 2019), https://www.nber.org/system/files/working

_papers/w26095/w26095.pdf.

69 Candon et al., “Declining Medicaid Fees and Primary Care Appointment Availability,” 145.

70 California Legislature’s Nonpartisan Fiscal and Policy Advisor, Improving Access to Dental Services for 

Individuals with Developmental Disabilities (Sacramento: Legislative Analyst’s Office, 2018), https://lao.ca.gov

/Publications/Report/3884.

71 Medicaid Adult Dental Benefits: An Overview (Hamilton, NJ: Center for Health Care Strategies, Inc., 2019), 

https://www.chcs.org/media/Adult-Oral-Health-Fact-Sheet_091519.pdf.

72 Oral Health and Well-Being Among Medicaid Adults by Type of Medicaid Dental Benefit (Chicago: Health Policy 

Institute, American Dental Association, 2018), https://www.ada.org/~/media/ADA/Science%20and%20Research

/HPI/Files/HPIgraphic_0518_1.pdf?la=en.

73 M.K. Choi, “The Impact of Medicaid Insurance Coverage on Dental Service Use,” Journal of Health Economics

30, no. 5 (2011): 1020–31, https://doi.org/10.1016/j.jhealeco.2011.08.002.

74 A. Singhal, P. Damiano, and L. Sabik, “Medicaid Adult Dental Benefits Increase Use of Dental Care, but Impact 

of Expansion on Dental Services Use Was Mixed,” Health Affairs 36, no. 4 (2017): 723–32. http://dx.doi.org/10.1377

/hlthaff.2016.0877.

75 National Academy for State Health Policy, State Medicaid Coverage of Dental Services for General Adult and 

Pregnant Populations (July 2, 2020), https://www.nashp.org/state-medicaid-coverage-of-dental-services-for

-general-adult-and-pregnant-populations/.

76 Classification of state Medicaid dental coverage is from National Academy for State Health Policy, State 

Medicaid Coverage of Dental Services for General Adult and Pregnant Populations (2020), accessed 

September 22, 2021, https://www.nashp.org/state-medicaid-coverage-of-dental-services-for-general-adult-and

-pregnant-populations/.

77 Waiver information is from the Medicaid Oral Health Policy database, created from NCD’s review of Medicaid 

waiver programs. Classification of state Medicaid dental coverage is from Medicaid Adult Dental Benefits: 

An Overview (Hamilton, NJ: Center for Health Care Strategies, Inc., July 2018), https://www.chcs.org/media

/Adult-Oral-Health-Fact-Sheet_072718.pdf.

78 2019 National Profile: Policy (Washington, DC: Medicaid/Medicare/CHIP Services Dental Association, 2019), 

https://www.msdanationalprofile.com/profiles/2019/national/all/policy (free account creation required to 

access).

79 Provider Payment and Delivery Systems (Washington, DC: Medicaid and CHIP Payment and Access 

Commission, 2021), https://www.macpac.gov/medicaid-101/provider-payment-and-delivery-systems/.

80 Hinton et al., 10 Things to Know, 2020.

81 Percentage of Medicaid Enrollees in Managed Care by State and Eligibility Group, FY 2018 (Washington, DC: 

Medicaid and CHIP Payment and Access Commission, 2020), https://www.macpac.gov/wp-content

/uploads/2015/01/EXHIBIT-30.-Percentage-of-Medicaid-Enrollees-in-Managed-Care-by-State-and-Eligibility

-Group-FY-2018.pdf.

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 97
82 Gupta et al., Medicaid Fee-For-Service Reimbursement, 2017.

83 Gupta et al., Medicaid Fee-For-Service Reimbursement, 2017.

84 Drawing on prior studies, NCD used CDT codes in the D0000s and D1000s range provided in non-ED, 

hospital, or ambulatory care settings to identify basic dental care.

85 NCD did not include people who received basic dental services in the ED, urgent care setting, or inpatient 

hospital in these figures to ensure that only people who were not receiving emergency care were included. 

Only a small percentage of people received preventive services in these settings, based on the T-MSIS 

analysis.

86 C. Yarbrough, M. Vujicic, and K. Nasseh, Estimating the Cost of Introducing a Medicaid Adult Dental Benefit in 

22 States (Chicago: Health Policy Institute, American Dental Association, 2016), http://www.ada.org/~/media

/ADA/Science%20and%20Research/HPI/Files/HPIBrief_0316_1.ashx (free account creation required to access).

87 NCD’s analysis of 2018 T-MSIS data.

88 Analysis of T-MSIS 2018 data, weighted to be nationally representative. For this table, NCD used the 2018 

Center for Health Care Strategies’ categorizations of state dental benefits, provided in the Medicaid policy 

database created for this project, to match the date of the T-MSIS data.

89 Medicaid Adult Dental Benefits: An Overview (Hamilton, NJ: Center for Health Care Strategies, Inc., July 

2018), https://www.chcs.org/media/Adult-Oral-Health-Fact-Sheet_072718.pdf.

90 NCD’s analysis of 2018 T-MSIS data. For this table, NCD used the 2018 Center for Health Care Strategies’ 

categorization of state Medicaid dental coverage for adults, provided in the MOHPD created for this project to 

match the date of the T-MSIS data. Details about the MOHPD is available as Appendix C.

91 NCD’s analysis of 2018 T-MSIS data. For this table, NCD used the 2018 Center for Health Care Strategies’ 

categorizations of state dental benefits, provided in the MOHPD created for this project, to match the date of 

the T-MSIS data. The classification of waivers is provided in the MOHPD Health Policy database and based on 

NCD’s review of state Medicaid waivers.

92 Impact of Increased Dental Reimbursement Rates on Husky A-Insured Children, 2006–2011 (Hartford: 

Connecticut Health Foundation. 2013), https://www.cthealth.org/publication/impact-increased-dental

-reimbursement-rates-husky-a-insured-children-2006-2011/.

93 Centers for Medicare and Medicaid Services, The State Guide to CMS Criteria for Medicaid Managed Care 

Contract Review and Approval (Washington, DC: Centers for Medicare and Medicaid Services, 2017), https://

www.medicaid.gov/sites/default/files/2020-02/mce-checklist-state-user-guide.pdf.

94 NCD used location of service in the ED and ICD-10 codes that indicate a nontraumatic dental condition in 

the ED, as defined by the American Dental Association on behalf of the Dental Quality Alliance (DQA). DQA 

Measure Specifications: Administrative Claims-Based Measures, Ambulatory Care Sensitive Emergency 

Department Visits for Non-Traumatic Dental Conditions in Adults (Dental Quality Alliance, American Dental 

Association, effective 2022 and accessed September 29, 2021), https://www.ada.org/~/media/ADA/DQA

/2022_Adult_ED_Visits.pdf?la=en (free account creation required to access).

95 NCD’s analysis of 2018 T-MSIS data. For this table, NCD used the July 2018 Center for Health Care Strategies’ 

categorizations of state dental benefits, provided in the MOHPD created for this project to match the date of 

the T-MSIS data.

96 This figure is taken from Figure 1, which provides estimates of receipt of basic dental care by state policy. This 

analysis focuses on a comparison between states with no or emergency-only dental coverage and limited or 

extensive dental coverage. We do not estimate the cost of implementing waivers to cover dental services, 

because waivers are targeted to certain populations and do not necessarily provide coverage to all adults with 

I/DD in the state.

97 This was estimated from a state-by-state analysis of 2018 T-MSIS data.

98 NCD used an estimate of $547, drawn from the cost per person with developmental disabilities to receive 

basic dental coverage, through a recent Texas waiver program, which included a cap of $1,000 annually. Texas 

Health and Human Services Commission, Dental Services for Adults with Disabilities (Austin: Texas Health 

98 National Council on Disability
and Human Services, 2018), https://www.hhs.texas.gov/sites/default/files/documents/laws-regulations/reports

-presentations/2018/hb-3295-sb-1-dental-services-adults-disabilities-dec-2018.pdf. This estimate was specifically for 

people with developmental disabilities and fell within the range of estimates available for the cost of dental care. 

For example, the Texas Health Institute’s 2021 report, Implementing a Dental Benefit for Adults with Disabilities 

Can Yield Significant Cost Savings, used a $152 cost of a single dental visit annually, which was derived from 

costs for the general adult population. A 2020 analysis by ADA HPI, Estimating the Cost of Introducing a Medicaid 

Dental Benefit in Virginia, placed the average cost of dental care in states that provide comprehensive dental 

coverage at $619. M. Vujicic, R. Starkel, and B. Harrison, Estimating the Cost of Introducing Comprehensive Adult 

Medicaid Dental Benefits in Virginia (Chicago: Health Policy Institute, American Dental Association, 2020), https://

vahealthcatalyst.org/wp-content/uploads/2020/01/HPI-Report-with-Intro-Letter.pdf.

99 NCD used the average median salary of dentists, collected from the U.S. Bureau of Labor Statistics, and 

provided in the Medicaid Oral Health Policy database created for this project, to adjust these figures for state 

variation in costs.

100 An umbrella review is a systematic review of previously conducted reviews of rigorous research. An umbrella 

review provides a rigorous comprehensive assessment of the scientific literature.

101 Seitz et al., “Current Knowledge on Correlations,” 2019.

102 National Association of Dental Plans, “NADP Analysis Shows Adults with Medicaid Preventive Dental Benefits 

Have Lower Medical Costs for Chronic Conditions,” Press Release (November 23, 2017), accessed September 

29, 2021, https://www.nadp.org/PressReleases/2017/11/23/nadp-analysis-shows-adults-with-medicaid

-preventive-dental-benefits-have-lower-medical-costs-for-chronic-conditions. Studies have shown associations 

between receiving preventive care and reduced costs of treatment for a range of chronic conditions. However, 

the strongest and most consistent links for reduced cost of care are for diabetes and coronary artery disease. 

See Yarbrough et al., Estimating the Cost of Introducing a Medicaid Adult Dental Benefit, 2016.

103 K.D. Smith, Implementing a Medicaid Dental Benefit for Adults with Disabilities Can Yield Significant Cost 

Savings (Austin: Texas Health Institute, 2021).

104 C. Yarbrough, Estimating the Cost of Introducing a Medicaid Adult Dental Benefit in Texas STAR Plus Program

(Chicago: American Dental Association, Health Policy Institute, 2020), https://www.txdisabilities.org/public

/upload/files/general/Texas_Estimate_-_4.22.pdf.

105 NCD calculated the number of adult Medicaid beneficiaries with I/DD who received nonemergency dental care in 

the ED by state, using 2018 T-MSIS data. NCD then multiplied this number by 50 percent, based on the research 

of ADA HPI suggesting that ED visits for nontraumatic dental care are reduced by 50 percent, using conservative 

estimates, within three years of implementation of a comprehensive dental benefit in Medicaid. Please see, 

for example, M. Vujicic, Estimating the Cost of Introducing Comprehensive Adult Medicaid Dental Benefits in 

Hawaii (Chicago: Health Policy Institute, American Dental Association, 2020), https://www.ada.org/~/media/ADA

/Science%20and%20Research/HPI/Files/HPIbrief_0220_1.pdf (free account creation required to access).

106 National Association of Dental Plans, “NADP Analysis Shows Adults with Medicaid Preventive Dental Benefits 

Have Lower Medical Costs for Chronic Conditions,” Press Release (November 23, 2017), accessed September 

29, 2021, https://www.nadp.org/PressReleases/2017/11/23/nadp-analysis-shows-adults-with-medicaid-preventive

-dental-benefits-have-lower-medical-costs-for-chronic-conditions.

107 S. Rosenbaum, R.D. Mauery, P. Shin, and J. Hidalgo, National Security and U.S. Child Health Policy: The 

Origins and Continuing Role of Medicaid and EPSDT (Washington, DC: Department of Health Policy, George 

Washington University School of Public Health and Health Services, 2005), https://publichealth.gwu.edu

/departments/healthpolicy/CHPR/downloads/mil_prep042605.pdf.

108 Louisiana State Act No. 450, Revision to Louisiana Revised Statutes of 1950 (2021), https://www.legis.la.gov

/legis/ViewDocument.aspx?d=1236011.

109 M. Musumeci, M. O’Malley Watts, and P. Chidambaram, Key State Policy Choices About Medicaid Home 

and Community-Based Services (Washington, DC: Kaiser Family Foundation, 2020), https://www.kff.org

/report-section/key-state-policy-choices-about-medicaid-home-and-community-based-services-issue-brief/.

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 99
110 Centers for Medicare and Medicaid, Home and Community Based Services 1915(i) (Washington, DC: Centers 

for Medicare and Medicaid), accessed January 6, 2022, https://www.medicaid.gov/medicaid/home

-community-based-services/home-community-based-services-authorities/home-community-based-services

-1915i/index.html.

111 Texas Health and Human Services, “H.B. 4533 Pilot Dental Study: June 2020 Status Update Center for 

Analytics and Decision Support,” PowerPoint Presentation (2020).

112 Conversation with anonymous key informants and Suma Setty, Senior Research Associate at National Center 

for Children in Poverty, Bank Street Graduate School of Education, conducted virtually on July 8, 2021.

113 Conversations with anonymous key informants, Chelsea Fosse, Senior Health Policy Analyst at Health Policy 

Institute, American Dental Association, and Suma Setty, Senior Research Associate at National Center for 

Children in Poverty, Bank Street Graduate School of Education, conducted virtually on January 11, 2021, and 

July 8, 2021, respectively.

114 Kaiser Family Foundation, Federal Medical Assistance Percentage (FMAP) for Medicaid and Multiplier, FY 

2021, accessed September 29, 2021, https://www.kff.org/medicaid/state-indicator/federal-matching-rate-and

-multiplier/?currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%

22%7D.

115 Centers for Medicare and Medicaid Services, Balancing Incentive Program (Washington, DC: Centers for 

Medicare and Medicaid), accessed January 6, 2022, https://www.medicaid.gov/medicaid/long-term-services

-supports/balancing-incentive-program/balancing-incentive-program/index.html.

116 See Medicaid Oral Health Policy database in appendixes to compare Medicaid FFS fees across states for a 

range of CDT codes. The most recently available fee schedules were reviewed.

117 Centers for Medicare and Medicaid Services, CMCS Informational Bulletin: CMS Oral Health Initiative 

and Dental Technical Support Opportunity (Washington, DC: Centers for Medicare and Medicaid Services, 

June 25, 2020), https://www.hhs.gov/guidance/sites/default/files/hhs-guidance-documents/cib062520.pdf.

118 Conversation with anonymous key informant, Chelsea Fosse, and Suma Setty, conducted virtually on 

January 11, 2021.

119 C. Fish-Parcham, Improving Access to Oral Health Care for Adults with Disabilities Can Improve Their Health 

and Well-being (Washington, DC: Families USA, 2019), https://familiesusa.org/wp-content/uploads/2019/10

/OH_Oral-Health-and-People-with-Disabilities_IssueBrief.pdf.

120 L. Slashcheva, R. Rader, and S. Sulkes, “Would People with Intellectual and Developmental Disabilities Benefit 

from Being Designated ‘Underserved’?,” AMA Journal of Ethics 18, no. 4 (2016): 422–29, https://doi.org

/10.1001/journalofethics.2016.18.4.pfor1-1604.

121 Key stakeholder, National Council on Disability’s Key Stakeholder Virtual Summit: Making Sufficient Oral 

Healthcare for People with I/DD a Cost-Effective Reality: Examining the Medicaid Reimbursement Rate. Held 

virtually via Zoom on November 17, 2020.

122 J. Lipper, Advancing Oral Health Through the Women, Infants, and Children Program: A New Hampshire Pilot 

Project (Hamilton, NJ: Center for Health Care Strategies, Inc., 2016), https://www.chcs.org/media/NH-State

-WIC-Profile_041316.pdf.

123 Missouri Department of Mental Health, “Elks Mobile Dental Program,” accessed September 29, 2021, https://

dmh.mo.gov/dev-disabilities/individuals-families/elk-dental.

124 Unpublished research conducted for a project focused on improving access to oral health care in New Jersey, 

funded by the WITH Foundation. New York: National Center for Children in Poverty.

125 Improving Access to Oral Health Care for Adults with Disabilities Can Improve Their Health and Well-Being

(Washington, DC: Families USA, 2019), https://familiesusa.org/wp-content/uploads/2019/10/OH_Oral-Health

-and-People-with-Disabilities_IssueBrief.pdf/.

126 Medicare Dental, Vision, and Hearing Act of 2021, H.R. 4311, 117th Cong. (2021–2022), https://www.congress

.gov/bill/117th-congress/house-bill/4311?.

100 National Council on Disability
127 Department of Veterans Affairs, Office of Research and Development, VA Research in Action: Oral Hygiene 

to Fight Pneumonia, accessed September 29, 2021, https://www.research.va.gov/research_in_action/Oral

-hygiene-to-fight-pneumonia.cfm.

128 Harvard School of Dental Medicine, “Harvard Dental Center–Cambridge,” accessed September 29, 2021, 

https://hsdm.harvard.edu/harvard-dental-center-cambridge.

129 Department of Veterans Affairs, Office of Research and Development, “VA research in action: Oral hygiene 

to fight pneumonia,” accessed September 29, 2021. https://www.research.va.gov/research_in_action/Oral

-hygiene-to-fight-pneumonia.cfm#:~:text=VA%20researchers%20developed%20and%20implemented,

living%20center%20and%20hospital%20patients.&text=By%20preventing%20hospital%2Dacquired%20

pneumonia,million%20as%20of%20July%202019.

130 Rutgers School of Dental Medicine, “Patient Care,” accessed September 29, 2021, https://sdm.rutgers.edu

/patient-care.

131 NYU School of Dentistry, “NYU Dentistry Oral Health Center for People with Disabilities,” accessed 

September 29, 2021, https://dental.nyu.edu/patientcare/ohcpd.html.

132 Steve Cook, Executive Director of The Arc of Mercer County, interview conducted on May 19, 2019, for Koball 

et al., Addressing Barriers to Oral Health and Health Care, 2020.

133 Key stakeholder, National Council on Disability’s Key Stakeholder Virtual Summit: Making Sufficient Oral 

Healthcare for People with I/DD a Cost-Effective Reality: Examining the Medicaid Reimbursement Rate. Held 

virtually via Zoom on November 17, 2020, and email correspondence with Steven Perlman, Global Clinical 

Director and Founder, Special Olympics Special Smiles and Clinical Professor of Pediatric Dentistry at Boston 

University School of Dental Medicine.

134 Email correspondence from Juliana David, Program Director–Oral Health, New Jersey chapter of the American 

Academy of Pediatrics, February 16, 2020.

135 R. Tipirneni, S.D. Goold, and J.Z. Ayanian, “Employment Status and Health Characteristics of Adults with 

Expanded Medicaid Coverage in Michigan,” JAMA Internal Medicine 178, no. 4 (2018): 564, https://doi.org/10.1001

/jamainternmed.2017.7055.

136 Charles Gresham et al., v. Alex Michael Azar, II, Secretary, United States Department of Health and Human 

Services in his official capacity, et al. and State of Arkansas, No. 19-5094, 16 (2020), https://www.cadc

.uscourts.gov/internet/opinions.nsf/DDBA611EB31A1A218525850E00580F2D/$file/19-5094%20-%

201828589.pdf.

137 American Dental Association, Code on Dental Procedures and Nomenclature (CDT Code), accessed 

September 29, 2021, https://www.ada.org/en/publications/cdt.

138 Practice #34005:The New Mexico Special Needs Dental Procedure Code, Dental Public Health Activities

(Reno, NV: Association of State and Territorial Dental Directors, 2007), https://www.astdd.org/bestpractices

/DES34005NMspecialneedsdentalcode.pdf.

139 Dental Services, 101 C.M.R. 314.00, Code of Massachusetts Regulations, https://www.mass.gov/doc/101-cmr

-314-dental-services/download.

140 C. Yarbrough, M. Vujicic, K. Aravamudhan, and A. Blatz, An analysis of dental spending among adults with 

private dental benefits. Program (Chicago: American Dental Association, Health Policy Institute, May 2016), 

https://www.ada.org/-/media/project/ada-organization/ada/ada-org/ada/ada/science-and-research/hpi/files

/hpibrief_0516_1.pdf.

141 Centers for Medicare and Medicaid Services, State Waivers List (Washington, DC: Centers for Medicare and 

Medicaid Services), https://www.medicaid.gov/medicaid/section-1115-demo/demonstration-and-waiver-list

/index.html?search_api_fulltext=&items_per_page=50&f%5B0%5D=state_waiver_status_facet%3A1561&

f%5B1%5D=waiver_state_facet%3A781#content#content#content.

Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities 101
National Council on Disability 

1331 F Street, NW, Suite 850 

Washington, DC 20004