This report is the culmination of an 18-month New Jersey Council on Developmental Disabilities (NJCDD) research grant awarded to Columbia University College of Dental Medicine and the National Center for Children in Poverty (NCCP) to identify barriers to oral health and health care for people with intellectual and developmental disabilities (IDD) and to develop a five-year advocacy plan designed to improve oral health and health care for people with IDD in New Jersey. The project focuses on oral health care delivery systems, accessing oral health care, and prevention of oral health issues among adults with IDD.
This project was inspired by NJCDD member concerns about accessing comprehensive oral health care for family members with IDD or for themselves. IDD is defined as a disability that begins during childhood, is lifelong, and substantially limits an individual’s functioning in several major life activities (e.g., self-care, learning, mobility, communication, self-direction, economic self-sufficiency, and the ability to live independently).
This project focused on the nearly 25,000 adults who are eligible to receive services through the Division of Developmental Disabilities (DDD) in New Jersey. Adults who receive DDD services must also qualify for Medicaid, thus the project focused on adults with IDD who are eligible for Medicaid.
This report contains findings related to the barriers to oral health care and potential solutions to these barriers. Strategies for addressing these barriers grew out of conversations during two convenings, one in October 2019, and another in January 2020, with key informants and stakeholders such as the New Jersey state Medicaid Office, the New Jersey Division of Developmental Disabilities, representatives from Medicaid Managed Care Organizations, and conversations with self-advocates and caregivers. As part of the project, the team also created a directory of dentists who serve patients with IDD, which combines responses from an original survey of dentists and multiple online dental directories.