Dental care important but elusive for many adults with intellectual and developmental disabilities

Each February, advocates across the U.S. raise awareness about the importance of dental health. Dental issues cause thousands of lost school and work hours each year. Good home hygiene and regular, professional dental care are critical steps to maintaining optimal oral health and preventing costly and painful oral conditions. Yet, for many low-income, health-disadvantaged adults in Virginia, simple home hygiene practices and trips to the dentist remain elusive.

Adults with intellectual and developmental disabilities (IDD) are particularly at-risk for gum disease and tooth decay. Poor communication skills, lack of manual dexterity, fear, uncontrolled movements, and other physical, emotional or behavioral factors can make it difficult for them to maintain proper oral hygiene. Even common behaviors like tooth brushing can prove challenging when coupled with the barriers of physical or intellectual disability. Briana, a 26 year-old Richmond woman living with a developmental disability, explains her own brushing experience: “I thought my teeth were clean, but I was brushing them the wrong way and I just needed assistance.” David, a former nurse and father to an adult son with physical and developmental disabilities, worked with someone to modify his son’s toothbrush. Though helpful, it did not make his son able to care for his own teeth. “Some of the people who worked with us put padding around the handle of the toothbrush so that he could hold it better,” David said. “But yet, even with electric toothbrushes, he still has to have help in taking care of his dental health.”

Higher elevated rates of poverty among adults with IDD cause many individuals to rely on state-funded Medicaid insurance to cover their health care expenses; however, the only dental service that Virginia Medicaid covers for non-pregnant adults (21 and over) is an emergency tooth extraction. Briana lamented this issue: “Insurance pays for the x-rays but they do not pay for the [teeth] cleaning. I don’t understand why our Medicaid can’t pay for that. One time I had to pay $130 just for my teeth.” Disabled individuals account for 19 percent of Virginia’s Medicaid population1, second only to children in low-income families. Additionally, research reveals that many adults with IDD need some sort of behavioral assistance, including general anesthesia, to undergo a dental procedure2, making it difficult to find a specially-trained dental provider and pay for treatment. Jeanine, whose 41 year-old daughter has a developmental disability, noted that, “Sometimes the best care for the individual is based on their disability and requires a specialist, because they can handle it.” Even parents with private insurance worry what will happen when they cannot cover their children’s medical bills. “Parents are getting older,” David commented. “We’re not always going to have an insurance policy to cover them.” 

Poor oral health is linked to diabetes, heart disease and preterm birth. Regular, preventive dental care can help maintain oral health, manage chronic diseases and improve overall health. In order to achieve optimal health for individuals with IDD, they need to have access to dental care. When you consider the unique physical and social needs of an individual with cerebral palsy or autism, providing dental care requires extra preparation and training.

Several Virginia-based organizations are banding together to improve the way oral health care is accessed, financed and delivered to the 8,800 adults living with IDD in the Commonwealth. In 2014, the Virginia Oral Health Coalition (VaOHC) embarked on a program, funded by the Virginia Board for People with Disabilities (VBPD), to increase the number of dental providers with the necessary skills to treat adults with IDD and to lay the foundation for future improvements in state-funded, adult dental coverage.

As a result, more than 60 existing and future dental providers in three regions received specialized, hands-on training and gained a greater appreciation for the complexities that IDD present. In addition, VaOHC collected many firsthand stories from adults with IDD and their caregivers about their experiences accessing dental care. The stories are being woven into communications with legislators in an ongoing effort to ensure state-funded insurance and health programs adequately meet the oral health needs of Virginians with IDD. The message to legislators is simple: better access to dental care will help individuals with IDD reach optimal oral health and thus improve their overall well-being.

Through the program, new oral health supporters emerged among program participants, residential care facility staff and family members. Rich Schultz, executive director for a Richmond-based residential care provider, jumped at the opportunity to involve his direct support staff members who are often the first to spot a dental problem among their clients with IDD. “Too often caregivers are told how to do things when they could often better tell us how to do it,” he said.

Having a strong, passionate voice for people with disabilities is essential to advancing state policies that increase access to oral health care. Dr. Jim Schroeder, a dentist who serves on the VaOHC board of directors, commented, “This program highlights their need for access to preventive dental benefits.” Dental providers in the community can also serve as key advocates for adults with IDD. Program participant Lyubov Slashcheva, a third-year dental student at Virginia Commonwealth University, agrees: “Dental professionals who care for individuals with special needs should be prepared to understand and address their special needs patients at all levels, advocating for their well-being in the dental chair, their communities and in partnership with organizations that encourage policy changes, to facilitate better access to oral health services.”

By impacting the way oral health care is understood and delivered both at home and in the dental chair using legislation, advocacy and grassroots engagement, adults with IDD can have better access to preventive dental care and, ultimately, better overall health. 

Visit our oral health and special needs webpage for more information about dental care for individuals with special health care needs, and what VaOHC is doing to protect their oral health. If you’re interested in becoming an advocate for individuals with developmental disabilities, consider the VBPD’s Partners in Policymaking program: 


1. Department of Medical Assistance Services, 2013.

2. Morgan, J et al. (August 2012) The oral health status of 4,732 adults with intellectual and developmental disabilities. J Am Dent Assoc, 143(8), 838-846.

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Sarah Bedard Holland