Jessamin Cipollina, MA
December 12, 2022
In the US, an estimated 3 million children and 61 million adults currently live with one or more physical, intellectual, or developmental disabilities. Every day, people with intellectual and developmental disabilities (IDD) encounter barriers to accessing appropriate health care services. One of the challenges is locating providers who are willing to provide care and accommodate their needs. As a result, many health problems and concerns are left untreated among people with IDD. Oral health is particularly neglected in this population, resulting in many oral health problems that can be prevented with more inclusive and accessible care. People with IDD require a special approach to dental care that dental offices often do not have the capacity to provide.
Children and adults with IDD bear a disproportionate burden of finding affordable care. These problems are exacerbated by socioeconomic and racial/ethnic disparities. Children from low-income families are more likely to have a disability (6.5%) than their more affluent counterparts (3.8%). American Indian and Alaska Native children are reported to have the highest rates of disability (5.9%), followed by children of more than one race (5.2%) and Black children (5.1%). Reflected in these disparities are the socioeconomic status of these groups: American Indian and Alaska Native households are found to have the second lowest median income with many families living in poverty, and Black, Hispanic and Latino households systematically have lower incomes and education levels, and encounter more barriers to finding employment.
A major barrier to oral care among people with IDD is finding an accessible and affordable health care provider. Frequently, families and caretakers do not know what providers or resources are available; online directories and listings are often inaccurate and outdated. Many communities lack providers that accommodate patients with IDD due in part to persistent bias and stigma and low reimbursement rates, and patients have to travel great distances just to find care.
Adults with IDD are more likely to have a low income and lower rates of employment. As a result, these adults are challenged to locate affordable health care; the CDC reports that 1 in 3 adults with disabilities do not have a usual healthcare provider and have an unmet healthcare need in the past year due to high costs. Adults living with disabilities also have higher rates of obesity, heart disease and diabetes than those without disabilities, and an increased risk of oral health problems is significantly associated with these conditions. There are many factors that impact this population’s ability to find appropriate care, and oral problems left untreated can lead to more complex oral and systemic health conditions.
Families of children with disabilities struggle to find affordable care as many providers do not accept Medicaid and other federal or state public and/or private insurance plans. While all children have a CHIP dental benefit, Medicaid dental coverage for adults, with or without IDD, is state-specific. Adult Medicaid dental benefits range from emergency to extensive coverage. Currently, 24 states and the District of Columbia have an extensive adult Medicaid dental benefit, 17 states have a limited adult dental benefit and 10 states only provide emergency coverage.
Health professions programs, including nursing, medical and dental programs, often do not include training to provide care for IDD patients. As a result, oral health care is more likely to be neglected among patients of all ages with special care needs. For children and adults with IDD, it often is difficult to complete independent self-care activities like oral hygiene. Brushing and flossing teeth effectively to maintain a consistent home oral hygiene regimen can be a challenge. It is not surprising that tooth decay and periodontal disease are more common in this patient population. Poor oral health habits like tooth grinding and clenching, pouching food in cheeks and tongue thrusting also can lead to serious oral malformations and delayed tooth eruption. Malocclusion, which includes tooth crowding and over- and underbites, increase risk for periodontal disease, caries and oral trauma.
Successfully maintaining home oral care, not to mention finding accessible dental care, poses a major health equity challenge among patients with IDD and their families. When getting to the dentist presents a significant barrier, primary care providers, including nurses, nurse practitioners, physicians, physician assistants, occupational therapists, and others, can make a value-added contribution to providing oral health education, screening, and oral hygiene coaching for their patients. Familiarity with use of adaptive devices makes oral hygiene self-care coaching more effective.
Improvements in accessible and affordable oral and overall health care for people with IDD is warranted; there are many considerations for care that health professionals need to recognize. A better understanding of developmental and intellectual disabilities starts in dental, medical and nursing education. Faculty, clinicians and organizations can all improve oral health access and decrease oral health disparities among patients with IDD by incorporating oral-systemic health education, training and resources into their pre-licensure curriculum and post-licensure clinical practice.
Dental clinics that specialize in providing care for patients with IDD who are unable to receive treatment in a conventional dental office are cropping up across the US. The NYU Dentistry Oral Health Center for People with Disabilities and the UPenn Care Center for Persons with Disabilities are dental offices that specialize in treating patients with IDD. These Centers also feature special equipment and accommodations for their patients, including multisensory rooms to help patients relax and reduce anxiety, chairs that are adjustable for bariatric and wheelchair needs, and spacious treatment rooms to maximize the comfort of their patients. These practices provide an extraordinary model of care for accommodating the physical, mental and emotional support needs where patients with disabilities are able to comfortably receive affordable and comprehensive dental care.
To build a stronger interprofessional oral health workforce and provide high quality, satisfying, and cost-effective care, accreditation standards and criteria need to hold faculty accountable for integrating model curricula that feature interprofessional didactic curriculum content and clinical experiences that link person-centered oral health and overall health for children and adults with IDD. Practicing clinicians need to complete professional development courses and/or certificate programs that equip them to make their practice more inclusive for those with disabilities. Clinicians who feel knowledgeable about how to meet the oral and physical needs of specific patient populations, generally feel more comfortable and confident about providing care.
There have been many developments and innovations in recent years to provide people with IDD the necessary resources to take charge of their own health and happiness, but there is still much more to do. The US Department of Health and Human Services (HHS) recently proposed a rule to strengthen nondiscrimination in health care. This rule includes provisions that will accelerate modifications to policies that accommodate people with disabilities, promoting inclusion of disability aids and services. However, while advocacy to improve health care for persons with IDD is growing, legislators, policymakers, regulators, and clinical academic and health systems leaders continue to miss the mark on recognizing the need for and advancing policy changes that promote health equity by making oral health for persons with IDD a curriculum standard and a clinical “best practice”. We call on all health system stakeholders – deans, faculty, students, health care professionals and policymakers – to learn more about developmental and intellectual disabilities and do their part to improve access to and quality of oral and overall health care for patients with disabilities.
Oral Health Care Resources for Educators and Providers:
Developmental Disabilities Nurses Association (DDNA)
National League for Nursing (NLN) Advancing Care Excellence for Persons with Disabilities (ACE.D)
Helen: The Official Journal of The American Academy of Developmental Medicine and Dentistry (AADMD)
National Institute of Dental and Craniofacial Research (NIDCR)
OHNEP's Interprofessional Oral Health Tool Kits
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- Centers for Disease Control Prevention. Disability Impacts All of Us. National Center on Birth Defects and Developmental Disabilities. Updated October 28, 2022.
- Lexology. HHS Announces Proposed Rule to Strengthen Nondiscrimination in Health Care. Law Business Research. Published October 13, 2022.
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- Prohmotion. Who’s Responsible for Treating People with Disabilities? All of Us. NYU Dentistry Center for Oral Health Policy and Management. Published October 6, 2022.
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- Young NAE, Crankshaw K. Disability Rates Highest Among American Indian and Alaska Native Children and Children Living in Poverty. United States Census Bureau. Published March 25, 2021.