Improving Dental Care for Individuals With IDDs

Momentum is building to address disparities, but significant barriers remain

Damien Cuffie, DDS, MPH

Lauren, a woman in her 30s from a suburb of New Orleans, Louisiana, lives with severe disabilities. Not long ago, she was repeatedly developing lung infections of unknown origin and was forced to constantly go to a hospital's emergency department and spend days in the intensive care unit. The infections got so bad, she had to have one of her lungs removed. Ultimately, it was discovered that she had a molar tooth abscess that she was aspirating into her lungs, spreading the infection over and over again.

Unfortunately, experiences like Lauren's are not uncommon for individuals with intellectual and/or developmental disabilities (IDDs). Dental care is one of the most cited unmet needs for individuals with IDDs, and as a result, many of these individuals are less likely to receive necessary restorative care. In most states, Medicaid stops covering dental benefits at age 21. This leaves many adults with IDDs with no access to affordable dental care, including the basic preventive and restorative care that directly impacts their overall health. Furthermore, due to sensory or mobility challenges, many patients with IDDs face significant barriers to seeking dental care, which makes this already underserved population extremely vulnerable to oral health issues.

All of this leads to significant disparities. For CareQuest Institute for Oral Health's State of Oral Health Equity in America 2022 survey, individuals were asked if they or someone in their household had an intellectual or developmental disability, and those who answered yes were described as being "part of the IDD community." The results of the survey revealed that a higher percentage of individuals in the IDD community rated their oral health as fair or poor (38%) when compared with those outside of the IDD community (23%). Members of the IDD community also reported feeling greater dental anxiety and experiencing more discrimination in oral healthcare settings, and the findings revealed that they were less likely to have dental insurance and more likely to have had no dental visits during the past 5 years.

Fortunately, there is now momentum building to close that gap in care. Healthcare providers and some state legislatures are increasingly advocating for the health of adults with IDDs. This summer, Louisiana became one of the first states in the country to offer comprehensive dental benefits to adults with IDDs through a new dental waiver program. The legislation was passed unanimously—a huge win for patients with IDDs and their families.

Meanwhile, in New York, DentaQuest, a leading national administrator of dental benefits, has joined Partners Health Plan (PHP) to implement a unique model that provides dental benefits and one-on-one case management for patients with IDDs. Through this relationship, DentaQuest and PHP work to ensure that patients with IDDs receive comprehensive preventive and restorative oral healthcare.

These improvements represent important steps forward, but significant barriers for patients with IDDs remain. Too many states do not offer any dental benefits to this population, and for those that do, awareness is a major issue, both among patients and providers. The lack of dental providers who are trained and able to provide care to patients with IDDs compounds access issues. Furthermore, many parents and caregivers are unaware of the available benefits or unsure about how to access them. For example, in New York, less than 10% of the eligible members have enrolled in the PHP plan. And in Louisiana, although the program auto-enrolls patients with IDDs, many caregivers still struggle to find a local provider who will treat them. That's why in Louisiana, those who championed the legislation are engaging in extensive outreach to spread the word among families and caregivers, as well as dentists, about this important benefit.

Although the recent progress to improve oral healthcare for patients with IDDs should be celebrated, it's clear that there needs to be a more comprehensive, long-term strategy that includes legislative and policy changes along with awareness efforts, research, and education and training programs. As members of the dental community, we must all do our part to ensure that this population is guaranteed the basic right to access the care that they need.

About the Author

Damien Cuffie, DDS, MPH, is DentaQuest's dental director for Louisiana.