Spring 2018

Having a Voice

Adults with disabilities help craft oral-health proposals.

By Helene Ragovin

People with intellectual and developmental disabilities face many challenges when it comes to maintaining good oral health. A multiyear project underway under the guidance of the School of Dental Medicine is bringing together this often-underserved population, their caregivers and advocates, and dental professionals to develop new ways to improve the situation.

Known as the Oral Health Partnership (OHP), the project is funded by the Patient-Centered Outcomes Research Institute (PCORI), a nonprofit authorized by Congress in 2010 as part of the Affordable Care Act.

Research by Tufts’ John Morgan, professor of public health and community service, and colleagues, has documented that people with intellectual and developmental disabilities (IDD) have a high burden of oral disease, even with access to comprehensive care, including in-office preventive services. OHP members are interested in what can happen beyond the dentist office—what resources can be available at home, for instance, to help with brushing and flossing? How can an anxious individual be made to feel more comfortable about a trip to the dentist? The idea is for the partnership to develop proposals for clinical research projects.

A key component is that adults with intellectual and developmental disabilities are active members of the partnership, said Paula Minihan, assistant professor of public health and community medicine at Tufts School of Medicine, and a lead investigator on the project. “They themselves have a voice and are not dependent on their caregivers to speak for them.”

“This is an exciting opportunity to work with community partners, including those with IDD, become more informed as we pursue the pathway to discover solutions to improving oral health for individuals with IDD,” said Morgan, the other lead investigator.

This is the third year for Tufts dental participation in the PCORI Pipeline to Proposal program, which has provided a total of $85,000 for the project. Tufts has worked in partnership with the Seven Hills Foundation, an integrated health-and human services-network providing a continuum of supports for people with significant life challenges in locations throughout Massachusetts.

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