An Underserved Population
Expanding access to care for patients with IDDs
Although the American Dental Association (ADA) guarantees equal access to oral healthcare for all individuals, unfortunately, the reality is that access is disproportionately reduced for many Americans with intellectual and developmental disabilities (IDDs), such as Down syndrome, Fragile X syndrome, autism spectrum disorder, fetal alcohol syndrome, and other conditions. Every general practitioner has an obligation to provide or facilitate care for these patients, but many have never been taught how, so disparities persist. Because oral healthcare is such an important component of maintaining overall health and well-being, maintaining access to it is one of the more significant problems faced by this underserved population.
Patients With Disabilities
Who are these underserved patients, and which conditions are considered IDDs? Steven Perlman, DDS, MScD, an adjunct clinical professor of pediatric dentistry at the Boston University School of Dental Medicine and the global clinical director of Special Olympics Special Smiles, generally defines patients with disabilities as "those patients whose medical, physical, psychological, or social conditions make it necessary to modify normal oral healthcare routines in order to provide them with treatment. These individuals include, but are not limited to, people with IDDs, complex medical problems, or significant physical limitations."
When serving these patients, using the correct terminology is important. Joel Berg, DDS, MS, professor emeritus of pediatric dentistry at the University of Washington School of Dentistry, notes that "‘people with disabilities' is the preferred term to ‘people with special needs.'"
According to data from the US Centers for Disease Control and Prevention, approximately 61 million Americans live with a disability.1 "When we think of disabilities, we tend to think of developmental disabilities; however, the fastest-growing group of disabilities includes mobility issues secondary to chronic conditions such as arthritis, Parkinson's disease, stroke, and Alzheimer's disease," says Miriam Robbins, DDS, MS, a professor and director of the Care Center for Persons with Disabilities at the University of Pennsylvania School of Dental Medicine. "Adults aged 65 and older are the most rapidly growing segment of the population that is experiencing physical and/or cognitive disabilities that significantly impact their daily lives."
Challenges of IDDs
Although patients with mobility issues present obstacles to care delivery, patients with IDDs face unique challenges, many of which are behavioral in nature. Allen Wong, DDS, EdD, a professor and director of the advanced education in general dentistry program at the University of the Pacific Arthur A. Dugoni School of Dentistry and the president of the American Academy of Developmental Medicine & Dentistry (AADMD), clarifies that "there are genetic and/or acquired factors that can contribute to IDD populations and that not all individuals with developmental disabilities have intellectual disabilities." Of the approximately 61 million disabled Americans, more than 7 million have an intellectual disability.2
The family members and caregivers of those with IDDs face an uphill battle when seeking treatment in many communities. For Orit Schneider of Bucks County, Pennsylvania, tending to the dental health needs of an adult son with a disability has been daunting at times. "Dean is very outgoing and doesn't appear to have a disability, but he has an IDD," she says. "Taking him to the dentist has always been an issue because he is very talkative and unable to sit still for very long. It is difficult to get your teeth cleaned if you won't stop talking or sit still."
Schneider explains that pediatric dentists were better able to work with her son, but once he turned 21 years old, he could no longer go to a pediatric dentist. "Other dentists who accept his insurance and are willing to deal with patients with special needs are very few and far between," she says.
Perhaps no one is more cognizant of the challenges of patients with IDDs than Perlman. He provided dental services to Rosemary Kennedy, the sister of President John F. Kennedy who had an intellectual disability. In 1968, her sister Eunice Kennedy Shriver founded the Special Olympics, and later, she asked Perlman to create the healthcare program for Special Olympics and oversee the dental program, Special Olympics Special Smiles, which provides free dental screenings and comprehensive oral healthcare information to Special Olympics athletes with support from the AADMD. "People with IDDs are the most medically and dentally underserved population," he says.
Fighting the Stigma
The seeds of Perlman's awareness were planted 27 years ago when he and Shriver noticed that dental schools did not prepare students to be competent in diagnosis and treatment planning for patients with IDDs and that there were no regulations requiring hands-on treatment. "We couldn't move the bar because the schools said that they couldn't make any money on the patients and that there was no faculty to teach it," he says.
Perlman would go on to testify before the President's Committee for People with Intellectual Disabilities and engage in further political advocacy. "Throughout my career, I've heard that dentists don't treat people with disabilities because there's a lack of education or reimbursement. But it goes a lot deeper than that. There's a stigma," he says. "The turning point came when we formed the AADMD."
One major issue involved the method used by the Health Resources & Services Administration to classify medically underserved areas/populations, which included criteria such as too few primary care providers, high infant mortality rates, high poverty rates, and large percentages of elderly individuals. "Although those who rendered medical and dental services could get their school loans repaid for working with certain populations, patients with IDDs didn't fit the criteria," says Perlman. "However, in 2010, the American Medical Association declared people with intellectual disabilities a medically underserved population, and in 2014, the ADA followed suit."
This was followed by the insertion of the word "disability" into ADA's Principles of Ethics and Code of Professional Conduct and similar changes made by the Commission on Dental Accreditation (CODA). "Now a dentist is obligated to provide competent care—not just diagnosis and treatment planning, but actual hands-on care," says Perlman. "Nonetheless, one of the barriers to care that remains is institutional culture." He refers to what has been created at the University of Pennsylvania School of Dental Medicine under Dean Mark S. Wolff, DDS, PhD, as the "world epicenter of dental care for people with disabilities."
Impact on Overall Health
For patients with special healthcare needs, the implications of having poor oral health are negative consequences to overall health, notes David Jourabchi, DDS, a pediatric dentist at the Pacific Dental Services Foundation's Dentists for Special Needs in Phoenix, Arizona. "The body is an organism of which the oral complex is only one component," he says. "As one of the primary entrances into the body, the oral cavity must be taken care of to avoid such consequences. Namely, conditions that are correlated with poor oral health, including chronic health conditions such as diabetes and high blood pressure. Our approach to dental care follows a medical management model for chronic diseases. We understand the biologic process that leads to cavities. This process is predictable and can be mitigated with healthy eating and effective at-home hygiene."
"Members of our families and communities with IDDs may live with multiple oral and overall health conditions," explains Nader Nadershahi, DDS, MBA, EdD, dean of the University of the Pacific Arthur A. Dugoni School of Dentistry and a member of the Santa Fe Group. "It is critical for patients and caregivers to work with healthcare providers who are able to collaborate and see the bigger picture of wellness for each individual and the community."
"Early diagnosis is important to the treatment of any disease, and the conditions of patients with IDDs are often overlooked and undertreated mainly as a result of diagnostic overshadowing," says Wong. Diagnostic overshadowing occurs when a symptom or symptoms are attributed to the condition of IDD rather than being investigated to determine the root cause. If diagnosis is inaccurate and the person is not properly treated, it can exacerbate greater health concerns. A common example of diagnostic overshadowing is when the behavior of a patient with an IDD becomes more aggressive and the patient is prescribed antidepressants when, in actuality, the change in behavior is resulting from the presence of tooth pain.
The State of Care
"Nationally, we still suffer from inadequate readily accessible care as well as inadequate access to funding and coverage for the oral and overall healthcare needs of individuals with IDDs," says Nadershahi.
Schneider knows this all too well. She could only find one practice in her area that was willing to appoint her adult son with an IDD. "He would see a dentist, and they'd say, ‘he's not sitting still enough for a hygienist to clean his teeth.' And I'd say, ‘Obviously, but he still needs to have his teeth cleaned.'"
"It's difficult to assess the current state of care because the National Council on Disability's 2017 issue brief Neglected for Too Long: Dental Care for People with Intellectual and Developmental Disabilities offers the most current data available," says Jourabchi. "Since its publication, many players have become more active, raised awareness, and even promoted improved access to care. The difficulty that we still face in access for people with IDD is at the individual provider level, which has huge variability regionally."
Berg adds that "dentistry also needs a better patient navigation system for patients with IDDs." Patient navigators can help individuals with IDD and their families to overcome barriers and guide them through the complex care system to promote timely diagnosis and better treatment outcomes.
The ADA Principles of Ethics and Code of Professional Conduct states that "…dentists shall not refuse to accept patients into their practice or deny service to patients because of the patient's…disability." This elevates the provision of treatment for individuals with IDDs from being the "right thing to do" to being a professional obligation for dentists.
"These principles are described to all dental students as a component of dental school education as well as dental professional ethics exams, which are usually a component of licensure," says Jourabchi.
"The focus of dentistry has primarily been on preserving lifestyle rather than preserving life," asserts David Carsten, DDS, a dentist anesthesiologist and assistant professor at Oregon Health & Science University's School of Dentistry. "It is foundationally entrepreneurial and reimbursed by surgical procedure. It is different from medicine in which there is a statutory and perceived duty to address all suffering people. If treating patients with IDDs requires extra time and extra training for little or no extra compensation, why make the sacrifice of obtaining that training? The value to do so has to be deeply held, and the compensation has to be reasonable—at least a break even."
Carsten points out that CODA requirements are also essential to improving access for patients with IDDs. "It is more important that the philosophy of caring for vulnerable people and having mercy for those of limited means be a publicly-held value," he says. "Providers have to learn about empathy and communication, become knowledgeable regarding the disabilities, and understand what is going on for these patients and their families. They need to learn how to modify care. A busy, bustling practice can be a difficult place for people with disabilities." Carsten notes that setting aside a time for that patient in a quiet or separate space with a door would work better for many patients and providers.
According to Jourabchi, obstacles to caring for individuals with IDD typically include varying levels of speech competency and tolerance to sounds, lights, and new sensory stimuli. "The clinical culture that providers establish in their offices can help their teams to be more confident in providing care for individuals with special healthcare needs while also allowing these individuals to experience an elevated level of comfort and trust," he notes.
"We strive to provide personalized care for each individual who chooses to be a part of our patient family," says Jourabchi. "A dental experience at our office begins in our reception area where patients are greeted by our team members and introduced to our sensory room. The sensory room is equipped with sensory stimuli that can be modified, including sensory tiles, fish tanks with bubbles, and galaxy lights."
After introductions in the sensory room, "we exhibit our plans for the visit to individuals and parents through pictures and words with our ‘social story,' which helps relieve some fear of the unknown as we embark on our dental journey and integrate behavior modification protocols, including tell-show-do, distraction, and desensitization, to help ease anxiety and boost confidence," says Jourabchi. "The prospective patient's dental and medical history are reviewed and preferences for sensory stimuli are considered in order to provide necessary treatment and promote predictable health outcomes. Obstacles to care for each patient are anticipated, and the approach is modified accordingly. We celebrate all goals and accomplishments and understand that all individuals learn at a different pace. In situations in which individuals cannot tolerate urgent treatment in a predictable manner, we offer varying levels of in-office sedation to facilitate it."
Sedation can be a helpful tool. "Pediatric dentists are accustomed to treating children in alternative environments, such as under general anesthesia," explains Berg. "Sedation and general anesthesia are very often a common part of our practice when treating children with complex special needs. For those who are low functioning, you can't even properly examine the teeth to determine what disease conditions may exist unless you periodically do that under general anesthesia. It's often called ‘evaluation under anesthesia.'" It can be necessary to acquire radiographs as well, he adds.
"Regarding general dentists, many are capable of managing and want to manage patients with special needs, but they don't have the training or access to an operating room," Berg says.
Jourabchi also acknowledges that this is a problem. "GPs should partner with providers who they are comfortable with either in-office or at a hospital/surgical center so that patients with IDDs can obtain necessary treatment from capable providers," he says.
Dental anesthesiology is a relatively recent specialty in which practitioners provide in-office anesthesia services. "As anesthesia becomes more available, I think that's going to be one of the biggest game changers for helping out with this transition," says Berg.
Sedation can be highly useful in the treatment of patients with IDDs; however, it is not a panacea. "I'm convinced that no matter how much you pay dentists, many don't want to treat patients with IDDs because of the issue of immobilization," suggests Perlman. "However, 90% to 95% of patients with disabilities can be treated routinely in any dental office with only minor modifications. Most people with intellectual disabilities should be and can be mainstreamed."
When Schneider took her son to the only practice in her area that treated patients with IDDs, she was told that Dean was too fidgety and needed to be put under general anesthesia. He didn't care for the experience, and it could only be done once a year, so she deferred future dental visits until she was introduced to Wolff at the University of Pennsylvania School of Dental Medicine. Although it was a 2-hour drive to see him, Schneider says it was worth it. "It was the most wonderful experience I have had regarding Dean's teeth and interactions with providers," she emphasizes. "Dr. Wolff would deal with him like he would deal with any other patient, but in shorter increments. You cannot clean all of Dean's teeth in one sitting because it requires him to be still for an hour. Dr. Wolff knocked it down to small increments of time that were more frequent. He explained that if it takes an hour to do a cleaning, you need to break up that cleaning into four 15-minute intervals that the patient can sit through to do each quadrant. Now I bring Dean back once a month instead of trying to get it all done in one sitting."
Unfortunately, for patients with IDDs, reimbursement often becomes a barrier to proper treatment, particularly in situations like Dean's in which treatment needs to be staged over additional appointments.
The Issue of Compensation
"For some of these patients, it's more time-consuming to provide the care, and there's no increase in reimbursement when significant management issues come into play," says Robbins. "Some insurance companies will pay for a behavioral modification code, but they'll only pay it once a year." She notes that dental insurance is very procedurally based. "They pay us to fix the problem, but not to prevent the root cause of the problem," she says. "We all know that dental disease is infectious in nature and can be prevented. A lot of insurance providers don't pay for fluoride varnish after the age of 14. That is a huge issue in this population because prevention is the name of the game. If you can teach the caregivers and family members how to provide adequate oral hygiene, get these patients in every 2 months to perform a fluoride varnish, and facilitate diet modification so they're eating less cariogenic foods, then you can prevent the disease. It's much easier to prevent the disease than it is to anesthetize the patient to extract a tooth or place a restoration."
"Historically, reimbursement rates for dental procedures have been established by third-party payors based on an overall healthy population," explains Jourabchi. "Third party payors are regional and governed by state laws and funding." He credits Wong's advocacy in California for the higher reimbursement provided for performing treatment that might take longer due to a patient's special healthcare needs or behavioral challenges.
Regarding Medicaid, although it covers many people, the coverage also varies state by state. It can provide greater reimbursement than private insurance in many situations. "Under Medicaid, it's often easier to get better reimbursement for patients with disabilities than patients without disabilities," notes Berg.
Caring for Adults With IDDs
Transitioning patients with IDDs from pediatrics to adult dentistry is challenging for both caregivers and providers. "Pediatric dentists have figured out how to manage special needs populations comprehensively as part of their training, residency, and practice," Berg says. "As these patients become adults, it becomes difficult to manage their oral healthcare within the confines of a pediatric dental practice because many of the procedures that they require, such as crown and bridge or periodontal treatments, are outside of the scope of practice of pediatric dentists. These patients have to make the transition to adult dentists."
Jourabchi agrees that the timely transitioning of care is of the utmost importance. "We are currently faced with the challenge of training GP providers to possess adequate knowledge, be comfortable with building trust/relationships, and provide quality dental treatment for patients with IDDs," he says.
Although recent changes made by CODA, general practice residency (GPR) programs, and advanced education in general dentistry (AEGD) programs have added requirements related to treating patients with disabilities, not every general practitioner receives that training. "We have a need to identify a larger group of practitioners within general dentistry who can treat adults with IDDs and also to develop better systems to help transition these patients from the pediatric environment to the adult environment," says Berg. He notes that advanced education in pediatric dentistry programs offer online policy guidelines addressing how pediatric dentists can help facilitate the transition.
Beyond changing the culture and improving education for general practitioners, some have suggested that the creation of a new dental specialty focusing on IDD could improve access to care for the population. "There were several resolutions at the 2021 ADA House of Delegates meeting that approached this topic," says Jane Grover, DDS, MPH, senior director of the ADA's Council on Advocacy for Access and Prevention. "One resolution directs the Council on Dental Education and Licensure to provide the findings of its feasibility study on special needs dentistry to the Special Care Dentistry Association (SCDA) for its consideration in pursuing an accreditation process and standards for advanced education programs in special needs dentistry by CODA." Special recognition for Special Needs Dentistry cannot be pursued until there are specific advanced education programs in this discipline accredited by CODA.
"Although the ADA movement to create a new specialty that is better equipped to treat and manage the care of these individuals' needs will help alleviate the stress that our current healthcare system is feeling, it does not absolve general practitioners of their responsibilities to provide care," emphasizes Jourabchi.
Perlman agrees. "It will take a considerable amount of time before the training programs can establish curriculums and graduate providers who can help alleviate the stress currently on the healthcare system," he says. "We need to focus on better preparing GPs through dental schools and GPR/AEGD programs so that they have the understanding and confidence required to care for this population."
"Creating a specialty entertains the notion that only specialists can care for patients with IDDs when the reality is that the vast majority of these patients can be managed by any dentist if awareness is raised and there is more education regarding how to do it," Berg says.
The truth of that is all too apparent to frustrated parents and caregivers like Schneider, whose son now goes to the dentist 4 months in a row for shorter appointments and then takes 2 months off. "Dr. Wolff has done a magnificent job teaching Dean the importance of oral care and hygiene," she says. "Dean now looks forward to his dental visits and tries his best to do as the doctor has told him." Schneider says that she has become aware that the vast majority of dentists are not trained in treating individuals with IDDs. "This lack of training leaves a growing population without what would be considered an essential medical service for any ‘normal' member of society," she says. "In addition, parents and caretakers often become frustrated and will avoid dealing with dental issues until they become critical and require invasive procedures. Dean has his own particular needs, but the next patient will be a little different. Pediatric dentists are trained in school to deal with all those different types of children, but general dentists are typically only trained to take care of teeth—not in how to deal with different types of people who have teeth. I'm very grateful that schools like the University of Pennsylvania are trying to make changes."
"The AADMD is working diligently to advocate, educate, and increase access to care through awareness of equitable quality health," says Wong. The organization has also worked to improve IDD curricula in medical schools and is currently working on a collaborative national curriculum for health to educate future providers. In addition, the AADMD has expanded to the student/resident chapters, encouraging education through seminars, advocacy, and virtual grand rounds for patient populations with IDDs. Wong acknowledges that the ADA has also continued its work to improve access. "Recently, CODA increased its standards for accreditation to include both didactic and clinical training for those with developmental disabilities," he notes.
A nationwide effort to improve access to care through collaboration, resource sharing, educational programs, and conferences is being executed by like-minded groups, including Project Accessible Oral Health, Special Olympics International, University of the Pacific, Penn Dental Medicine, the Special Care Dentistry Association, New York University, the University of Texas Health Science Center at Houston, the Developmental Disabilities Nurses Association, the Institute for Exceptional Care, the American Association on Intellectual and Developmental Disabilities, Positive Exposure, the Delta Dental Foundation, Anthem, the Medicaid State Dental Association, the National Alliance for Direct Support Professionals, the National Council for Disability, and the National Task Group on Intellectual Disabilities and Dementia Practices.
"To become a champion, one must immerse himself or herself in the community and work with patients, caregivers, providers, and other partners," says Nadershahi. "The University of the Pacific dental faculty have been advocates for those with IDDs from the local to the national level."
According to the ADA, the dental profession's continued ability to effectively provide dental care for America's special needs population is dependent on sustaining a strong educational foundation in this area. "The ADA encourages efforts to maintain and expand the availability of courses and programs at the predoctoral, advanced, and continuing educational levels that support practitioners in providing dental treatment to patients whose medical, physical, psychological, cognitive or social situations make it necessary to consider a wide range of assessment and care options," says Grover. "Dental practitioners are highly encouraged to regularly participate in continuing education in this area."
Growing as Providers
Jourabchi believes that treating patients with IDDs not only allows dentists to become better providers but also opens the door to treating their family members because many families of patients with IDDs prefer to have one dental practice handling all of their care. "Every individual that we treat provides us with an opportunity to learn more about ourselves and how we can alter our approach to provide more positive outcomes," he says.
Berg agrees and notes that "although parents of children with disabilities are amazing parents who dedicate their lives to providing extra special care, research has shown that the siblings of children with disabilities often have higher caries rates than the children with disabilities themselves because they sometimes don't get as much attention from the parents."
Ultimately, increasing awareness of the need to improve access to treatment for those with IDDs is the most important factor. "If each dentist agrees to take on a few adults with IDDs into his or her practice, we're going to make a huge dent and get closer to solving this problem," says Berg.
"People with IDDs have a significant need for dental care and are subject to a great deal of unnecessary suffering," Carsten says. "I see a lot of work to do. It is more about changing hearts than changing minds. The public has to have the will to address the suffering of vulnerable people. When the need is persuasively communicated, the will to address it increases for people who feel compassion—all compassionate people, not just dentists. This is a team sport."
Highlighting Disparities and Promoting Education
As a preliminary to the California Dental Association’s September 2022 Expo, the Santa Fe Group and the University of the Pacific Arthur A. Dugoni School of Dentistry are co-sponsoring a 2-day event “to highlight disparities in care and the joy of treating patients with IDDs” as well as to promote IDD education.
“The event will help to elevate the conversation and education by focusing on the experiences of experts in the field and self-advocates,” says Wong. Wong, a Santa Fe Group fellow, describes the group as a think tank of like-minded individuals that works to convene key organizations to help improve lives through oral health. He emphasizes that the group recognizes the “huge disparity of care” in the IDD population and is focusing its attention toward achieving equity.
Note: more information about this event will be available at a later date.
1. CDC. Disability impacts all of us (infographic). CDC website. https://www.cdc.gov/ncbddd/disabilityandhealth/documents/disabilities_impacts_all_of_us.pdf. Published February 21, 2019. Accessed December 17, 2021.
2. National Disability Navigator Resource Collaborative. Population specific fact sheet-intellectual disability. NDNRC website. https://nationaldisabilitynavigator.org/ndnrc-materials/fact-sheets/population-specific-fact-sheet-intellectual-disability/. Published 2014. Accessed December 17, 2021.