Background: Long-term care services are funded primarily by Medicaid long-term services and support in the United States, where eligibility is based on care needs of the individual with intellectual and developmental disability alone. Impact of Medicaid waiver services on self-reported caregiver needs is not well understood. Method: Caregivers (n…

Background: Few family caregivers of individuals with intellectual or developmental disabilities develop long-term care (LTC) plans for their relative. Web-based interventions promoting LTC planning have potential for widespread adoption into clinical practice. Methods: We conducted focus groups with 49 primary caregivers of individuals with…

Emerging research tests the impact of United States Medicaid home and community-based (HCBS) waiver policy on outcomes for people with intellectual and developmental disabilities; however, this body of work has yet to be synthesized. We conducted a scoping review to establish what is known about the impact of Medicaid HCBS policy on the lives of…

Challenges in collecting comprehensive health surveillance data on people with intellectual and developmental disabilities (IDD) are numerous. A number of important issues and strategies are discussed in the articles contained in this special issue of "Intellectual and Developmental Disabilities." In this article, we focus on the…

This project sought to identify Medicaid members with intellectual and developmental disabilities (IDD) in five states (Delaware, Iowa, Massachusetts, New York, and South Carolina) to develop a cohort for subsequent analyses of medical conditions and service utilization. We estimated that over 300,000 Medicaid members in these states had IDD. All…