Unheard Voices: Shedding Light on the Overlooked Dental Care Challenges of I/DD Populations
Authors:
Sean G. Boynes, DMD, MS; President, GameShift Healthcare Solutions; Board of Directors, Harmony Health Foundation
Tina Saw, DDS; Founder and CEO, Oral Genome
Jeremy Norden-Paul, MEd; Director, Division of Program Innovation, Tennessee Department of Intellectual and Developmental Disabilities
Vanessa Rastovic, JD; Policy Manager, Disability Healthcare Initiative, The Arc of Greater Pittsburgh
Navigating the intricate landscape of oral health care for individuals living with intellectual and developmental disabilities (IDD) reveals a narrative that is rich with the formidable challenges faced by this community—enduring protracted wait times, meeting discrimination, confronting restricted access, and contending with an unsettling reliance on sedation. The National Council on Disability (NCD) has starkly declared that achieving optimal health for the disabled population remains an elusive pursuit within a health system that has persistently failed to foster inclusivity over decades. (ref 1-2) Understandably, individuals living with disabilities may perceive the U.S. healthcare system as a potential source of harm.
In the silent corridors of healthcare access, individuals with IDD often find themselves trapped in a cycle of overlooked oral health struggles. As we delve into the complexities of this issue, it becomes increasingly clear that the barriers to dental care access for IDD populations are not isolated but deeply intertwined with broader systemic challenges. Many individuals with IDD are situated within or near poverty due to systemic barriers, amplifying the hurdles they face in accessing both oral and medical health care. This interconnected web of social determinants of health underscores the urgent need for a closer examination of how we can lift ignored voices and provide fair access to essential oral health services for this vulnerable population.
We thoroughly explore the complexities of challenges within the intricate structures of oral health systems, looking to unravel exploitative aspects and daring to question established norms. Drawing upon existing research findings and merging with innovative recommendations, our aim crystallizes—to present a narrative that goes beyond the existing norms aiming to bring about a time marked by fairness, inclusiveness, and much better oral health care for those too often overlooked and pushed to the peripheries of care. (ref 1-2)
The Prolonged Struggle in Accessing Oral Health Care
The overlooked ordeal faced by individuals with IDD is reflected in the staggering statistics surrounding wait times for dental appointments. A scoping literature review from 2019 determined that the most reported barrier to dental care were wait times. (ref 3) In addition, the NCD stated that actions of hospital administrators have limited access of I/DD populations to hospital-based dental care resulting in “exceptionally long wait times”. (ref 1-2) These wait times bring into perspective that those with IDD are less likely to achieve preventive care appointments or have a dental home, and more likely to only have a dental appointment when something is wrong, or they are experiencing pain. (ref 1, 4-6) Additionally, published studies show that delayed dental care and long wait times impact vulnerable populations, leading to higher rates of preventable oral diseases, decreased patient satisfaction, ongoing pain, poorer systemic outcomes, more extensive dental treatments, increased use of emergency care, and increased cost. (ref 7-12)
Mystery Shopper Findings: Long Wait Times and Empty Appointments
Within the realm of oral health care, individuals with I/DD navigate challenging terrain. Mystery shopper programs from multiple states unveil the stark reality—difficulties in obtaining appointments, limited access, and outright refusals for care. Mystery shopper programs aim to assess the experiences of individuals seeking healthcare, including dental care, and to examine the accuracy of publicly available information. In the mystery shopper process, individuals contact dental offices or care sites to schedule a new patient appointment, helping to evaluate the ease and efficiency of establishing a dental home within a provider network. These initiatives offer a reliable way to understand the capabilities and effectiveness of a healthcare provider network. (ref 13-17)
In the intricate dance between demand and availability, the reality is stark. According to 2023 research findings, I/DD populations in West Virginia (WV) endure average waits of 115 days for initial appointments and over 196 total days for treatment visits compared to WV state averages of 70 days for initial appointments and over 94 days for treatment visits, (ref 18) This represents an approximate 64% increase in new patient wait times for I/DD populations compared to other individuals seeking care, and well above WV state goals of 30 days. Similar mystery shopper programs were completed in 2023. In Ohio and Michigan, mystery shopper scenarios of a child with a disability determined that the average wait time for an initial appointment was over 87 days for both states, compared to the overall average wait time of 52 days in Ohio and 61 days in Michigan. (ref 18-20) A similar analysis from 2022 in Pennsylvania also determined that persons with I/DD have difficulty in achieving a visit for dental care with wait times of over 91 days, well over state goals of 15 to 30 days. (ref 13)
The mystery shopper programs use up to four scenarios to obtain information for different types of patients and types of insurance coverage or ability to pay for dental care. Interestingly, the scenario used for individuals with I/DD includes patients that have commercial insurance and an ability to pay for care. This creates a better comparison to another scenario where an individual without a disability has commercial insurance and an ability to pay. Thus, establishing a difference between the two scenarios as one shopper has a disability, and the other does not. When comparing these two scenarios, the wait times for those with a disability are significantly longer compared to those not conveying a disability. As seen in Figure 1, there is consistency across mystery shopper programs of longer wait times comparing scenarios with commercial insurance and an ability to pay based on disability. The average days to achieve a first dental appointment, 86 days across four states for an individual with I/DD and 49 days for a shopper scenario without a disability. This is a 76% increase in the waiting period.
Figure 1: Comparison of mystery shopper program scenarios for patient wait times (days) between individuals with a disability and those without that have commercial insurance and ability to pay. (ref 13,18-20)
Individuals with I/DD encounter heightened challenges beyond the typical process of scheduling an appointment. Previous studies have reported that a significant percentage of dental care sites, which calculated ranges from 31% to 50%, did not cater to patients with I/DD, leading to a complex web of referrals, extended wait times, and dependence on a fragmented and discriminatory system. (ref 13, 18-20) The patient’s journey to care was further affected that even if they can get in for an initial appointment that many of accessible sites requiring sedation, behavioral management fees, or referrals for additional treatment. Based on earlier mystery shopper projects, the confusing pathway for care access is mapped in Figure 2. Nearly half of the sites that will create a new patient appointment for an I/DD patient end up referring out for any treatment beyond an examination and a full or partial cleaning. This often results in loss of insurance coverage given the limitations placed on the number of exams and cleanings one can have each year. The statistics not only highlight the severity of the issue but also underscore the urgency for transformative solutions to alleviate the burdensome wait times and ensure prompt and fair oral health care.
Figure 2: A mapping of the difficult patient journey for persons with I/DD in achieving dental care access (data utilized for the mapping is combining reports from four mystery shopper programs in MI, OH, PA, & WV, 2022-2023 and rounded to the nearest tenth). (ref 13,18-20)
An Over-Reliance on Sedation and Anesthesiology
The haunting specter of over-reliance on sedation looms large, perpetuating a cycle that denies individuals in this community their right to essential oral health care. A 2021 publication determined that dentists encounter subtle influences in their decision-making through education and training, leading to a preference for tooth extraction under general anesthesia for individuals with disabilities. (ref 21) The overuse of sedation within this population has been well-documented with estimates that only 25% of the population need sedation care, yet the high-end of ranges are reported from 45% to 60% of I/DD patients that receive sedation. (ref 13,22-24) Regardless, wait time for I/DD populations significantly increase if an individual requires or is scheduled for sedation or general anesthesia care. In a report from the California Legislative Analyst’s Office, wait times for adults with an I/DD that need general anesthesia can wait up to 3 years to have dental care provided. (ref 25) A similar report from New Jersey reported wait times up to 2 years for adults with I/DD to receive care under general anesthesia. (ref 26) The Louisiana Dental Task Force for Adults with Developmental Disabilities determined wait times from 6 months to 5 years for dental care with sedation. (ref 27) To add to this access challenge, the distribution of those providers who could provide the level of sedation necessary are mainly located in urban areas. (ref 13,28-29) This is problematic in that rural residents exhibit a 14.7% higher likelihood of experiencing disability compared to their urban counterparts. (ref 13,19,25, 30) Geographic isolation and limited access to transportation and healthcare facilities in rural areas pose challenges for coordinating care, exacerbating difficulties stemming from these barriers. Ultimately, the use of sedation and anesthesia for patients with special healthcare needs is increasing, while there is little oral health monitoring of these patients and preventive care is insufficient. (ref 23) The over-reliance on sedation not only perpetuates a cycle of denying essential oral health care but also poses significant physical risks, raising ethical concerns about the balance between ensuring safety through sedation and the potential harm it may inflict. (ref 31-34) This dilemma underscores the urgency of addressing systemic barriers to access, which could alleviate the need for unnecessary sedation and uphold the principle of "do no harm" in healthcare provision.
How Did We Get Here? A Critical Examination of Progress in Access and Quality Care
The historical trajectory of oral health care for individuals with I/DD since the 1950s reflects well-intentioned policies advocated by federal agencies like CMS and HRSA. Despite efforts to improve access and quality care through policy changes, persistent gaps have resulted in prolonged wait times, discrimination, and an over-reliance on sedation for this community.
Policy changes aimed at increasing Medicaid and Medicare reimbursements and provider incentives were intended to dismantle systemic barriers. However, the translation of these reforms into tangible improvements remains questionable, placing a burden on dental care providers and staff. The mismatch between policy intentions and the intricate challenges of oral health care, requiring a customized approach for the I/DD population, forces dental staff into de facto bureaucratic roles responsible for policy interpretation and implementation. (Figure 3)
Figure 3: The responsibility of dental care teams in their role as a de-facto bureaucrat in navigating the current dental health care system to achieve proper care for patients with I/DD. This leads to decreased participation to provide care and a desire to not perform within the dental insurance and medical assistance marketplace. [Adapted from: Lau S. Insurance doesn’t care about special healthcare needs. [Dissertation] Virginia Commonwealth University, 2021] (ref 35)
Bureaucracy has been defined as a bunch of tasks organized by weighing costs and benefits to move a platform or action forward. (ref 35) This aligns with the idea of rationalized systems, showing how bureaucracy has turned into a form of governance. (ref 36) From a policy standpoint, this shift puts the system's efficiency above individual benefits, resulting in patients being left out of decision-making and their experiences not considered in quality assessments. (ref 37) Nonetheless, when dental staff take on bureaucratic roles to interpret and implement policies, it adds complexity, especially impacting individuals with I/DD and potentially limiting their access to care. (ref 35,38) The challenges of dealing with costs, time, and frustration in this system make many care teams and staff wonder if it's worth it, leading many to choose not to participate or leave government or commercial health plan networks. This, in turn, puts pressure on insurance companies to bring in more providers to their networks without ensuring provider coverage for I/DD populations.
This administrative complexity is further compounded by the growing influence of corporate dentistry within the oral healthcare landscape. Viewing these dynamics through an equity lens underscores the importance of recognizing how corporate-driven models might disproportionately affect individuals with I/DD, worsening existing inequalities. As large-scale dental entities with the resources to navigate bureaucratic processes and the infrastructure to optimize care through rigorous quality control measures and specialized informatics, corporate dental practices are more adept at engaging with policy-driven insurance frameworks. However, their inclination towards a standardized, conveyor belt approach to dentistry, aimed at maximizing efficiency, often clashes with the unique requirements of individuals with I/DD. This incongruity is highlighted by findings from mystery shopper programs in West Virginia and Pennsylvania, which reveal a troubling trend: corporate dental establishments are notably less inclined to provide care for individuals with I/DD. (ref 13,18) In fact, statistics show that a substantial 42% of corporate dental practices do not cater to this demographic, compared to a lower rate of 25% among other types of dental businesses. (ref 13,18) This disparity is especially concerning given that a significant portion of people with I/DD rely on public healthcare benefits like Medicaid and Medicare, which are becoming increasingly dependent on corporate dental care delivery to fill-out provider networks.
As the administrative demands of oral health care intensify, corporate-driven models gain prominence, emphasizing economic viability over tailored support for individuals with I/DD. The historical policy changes, while well-intentioned, have inadvertently paved the way for corporations to manage and afford the administrative burden more effectively. The percentages from mystery shopper programs underscore this shift, revealing that corporate dental sites are less likely to provide essential care for the I/DD population. This disparity calls for a closer examination of how corporate dental practices may contribute to inequitable access to crucial oral health services.
Innovative Solutions: Rewriting the Narrative
Rewriting the Narrative Amidst the challenges faced in oral healthcare for individuals with I/DD, a transformative vision appears, driven by innovation, compassion, and inclusivity. Acknowledging the shortcomings of the current broken system, there's a critical need to reshape prevention strategies, placing more control in the hands of I/DD populations. Concrete policy recommendations include:
Establishing specialized oral health education and training programs for caregivers and healthcare professionals catering to individuals with I/DD, ensuring they are equipped with the necessary skills and knowledge to provide tailored care.
Implementing incentives for dental care providers to accommodate individuals with I/DD, such as reimbursement bonuses or tax credits for investing in accessible facilities and specialized equipment.
Developing state-level mandates or regulations requiring dental practices to include accommodations for individuals with disabilities in their service offerings, ensuring equitable access to oral health services across all healthcare settings.
New technologies become a catalyst for empowerment, holding healthcare systems accountable in this quest for equitable oral health.
Navigating the path towards equitable oral healthcare and addressing earlier challenges involves a transformative shift to personalized health care. This approach adapts healthcare to individual needs, overcoming the unintended consequences of institutionalized equity. (ref 39) The envisioned future calls for seamless data sharing, placing patients in control, streamlining processes, reducing administrative burdens, and enhancing care coordination. However, an equity-centered approach requires a nuanced consideration of how these changes can specifically help individuals with I/DD, addressing the unique challenges they face in accessing and receiving oral health care. Techniques like personal coaching and motivational interviewing prove effective in instigating enduring behavior changes and improving oral health outcomes.
The vision aims to integrate prevention and behavior changes into homes, prioritizing access to innovative oral health technologies for individuals with I/DD. Utilizing advancements like salivary testing, artificial intelligence (AI), mHealth applications, and AI-based intraoral photography, the healthcare system will be more likely to seek personalized care within familiar home environments, addressing disparities in traditional healthcare. Engaging support networks, including caregivers, enhances accessibility and effectiveness of interventions. Early, cost-effective in-home visits transform oral healthcare delivery. Advocating policy changes eases seamless integration of technology into mainstream healthcare, promoting a preventive, individualized approach. This shift benefits individuals with I/DD and fosters a more inclusive, patient-centric oral healthcare system.
However, implementing technology-based` person-centered care faces challenges related to data privacy, financial considerations, and industry resistance to change. (ref 39-40) Public-private partnerships, particularly with state agencies such as Medicaid and I/DD agencies, hold significant potential in addressing the challenges of implementing technology-based person-centered care. These collaborations can help resource sharing, streamline access to funding, and promote coordinated efforts to ensure that individuals with I/DD receive fair and effective oral healthcare services. Additionally, policymakers are urged to prioritize a hybrid reimbursement model that balances fee-for-service (FFS) and value-based care (VBC), aligning reimbursement policies with personalized care and fostering a patient-centered approach to oral healthcare.
While technological integration is crucial, evaluating the safety and efficacy of rapid technological changes poses challenges. The integration of the ICER-PHTI framework appears as a robust process for evaluating new technologies, particularly within the context of I/DD. (ref 41) This framework, rooted in inclusivity, health equity, and innovative technologies becomes pivotal in ensuring consistency and reliability throughout the evaluation process. (Figure 4) By actively involving stakeholders, end-users, and healthcare professionals, it serves as a strategic tool for assessing the impact of digital health technologies, contributing significantly to the field, and proving a comprehensive model for successful implementation within the domain of disabilities.
Figure 4: ICER-PHTI Assessment Framework for Digital Health Technologies. (ref 41)
Conclusion: A Vision for Tomorrow
In conclusion, we envision a future where oral health care becomes an undeniable right rather than a privilege, accessible to all, regardless of ability or disability. This paper has highlighted the challenges individuals with intellectual and developmental disabilities face in accessing oral health care, shedding light on systemic barriers perpetuating disparities. By addressing these barriers, we not only pave the way for equitable access but also recognize the crucial interrelationship between oral health, physical well-being, and overall life quality.
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About the Authors
Dr. Sean Boynes is a parent disability advocate and President of GameShift Healthcare Solutions, LLC and serves on the Board of Directors of Harmony Health Foundation in Weirton, WV
Jeremy Norden-Paul leads a team that uses technology and other innovative approaches to help people increase their independence and quality of life and currently serves as Director of the Division of Program Innovation for the Tennessee Department of Intellectual and Developmental Disabilities (DIDD) in Nashville, TN
Dr. Tina Saw is an healthcare entrepreneur and general dentist serving as CEO of Oral Genome and Founder of Harmony Health Foundation in Carlsbad, CA
Vanessa Rastovic' is a universal inclusion advocate and is the Policy Manager, Disability Healthcare Initiative for The Arc of Greater Pittsburgh / Achieva in Pittsburgh, PA.