The purpose of this study is to lay a foundation for illustrating the importance of longitudinal data collection by sharing the results of the Independent Monitoring for Quality (IM4Q) program in Pennsylvania designed to collect data over time on the quality of services for adults with intellectual and developmental disabilities. In this article,…

Background: Long-term care planning (LTCP) is critical for individuals with intellectual/developmental disabilities. Objectives of this study were to investigate progression through LTCP, and associations between social support and: (1) LTCP and (2) burden among family caregivers. Methods: A cross-sectional survey was distributed to caregivers of…

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…

Participation in enjoyable activities is instrumental to improving individuals' quality of life. Previous studies have indicated engagement in community-based activities and physical exercise are beneficial to individuals with intellectual disabilities (ID). The purpose of this study was to understand, from their perceptions, fun activities in…

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…

Adolescents with intellectual and developmental disabilities (IDD) tend to receive inadequate comprehensive sex education (CSE). This problem could be addressed by providing sex education taught by general education health teachers to students with IDD in high school, a cost-effective yet underutilized and under researched service model. This…

Introduction: Youth with intellectual disabilities (ID) demonstrate higher rates of disruptive behavior disorders (DBDs) than youth with typical development (TD). DBDs such as oppositional defiant disorder (ODD) predict higher rates of delinquency during adolescence. Yet, few studies have examined risk-taking and delinquency among youth with ID.…

People with intellectual and developmental disabilities (IDD) continue to experience high rates of unemployment. Previous research suggests that including an employment goal in an individual's service plan can be a mechanism toward attaining employment, especially in a community setting. This study contributes to the understanding of the role of…

Students with intellectual disability (ID) tend to have different experiences than their peers without ID as it pertains to the curriculum they receive, the locations where they are taught, and the amount of time they are provided instruction. The purpose of this exploratory study was to examine the curricular areas and contexts in which high…

This study examined rates of and contributing factors to self-determination among young adults with autism spectrum disorder. Caregivers of young adults with autism spectrum disorder, 16-25 years, from five Autism Treatment Network sites completed surveys about their young adults' transition experiences including the American Institutes for…

Purpose: Many aided augmentative and alternative communication (AAC) systems require the use of an external display that is represented via a visual modality. It is critical to evaluate and understand visual-perceptual processing in individuals with disabilities who could benefit from AAC. One way to evaluate how individuals process visual…

Community participation is essential to overall health and well-being. However, research on the community participation experiences and preferences of autistic adults is lacking. Results from a large, mid-Atlantic statewide needs assessment survey found that a number of activities that include social interactions or are focused on meeting daily…

Inclusive postsecondary education (IPSE) programs can provide young adults with IDD opportunities for training and experiences in continuing academic instruction, transition goals, independent living as well as employment. Parent readiness is an important aspect of having young adults embrace their increasing independence. While the prospective…

Case managers, often called support coordinators, are pivotal in the service system supporting people with intellectual/developmental disabilities (I/DD) and their families to have meaningful lives in the community, which includes access to community integrated employment. Support coordinators balance this priority, along with ensuring individual…

Inclusive post-secondary education (IPSE) programs for students with intellectual disability are growing rapidly, yet demand still outweighs the availability of programs. To increase the success and sustainability of IPSE, universities must understand stakeholders' perceptions of inclusion. The "Perspectives of Diversity and Inclusion…