Research in Partnership with People with Disabilities, Families, Professionals, and Policymakers

How does a University research center impact the lives of people with disabilities and their families?

ICI’s Research and Training Center on Community Living (RTC-CL) asked itself that question and found many answers. Research conducted in this center is done with a number of critical partnerships including people with disabilities, families, professionals, and policymakers. By viewing themselves as partners with others in the field, RTC-CL researchers focus their attention on questions with “real world” impact that will be used to inform policies and practices in the field. This leads to findings that add to an improved understanding of the needs of people with disabilities.

To share the results of core research conducted from 2013–18 with a broader audience, the RTC-CL created summaries of the following studies, along with short videos featuring researchers discussing the results and impact of their work, and why it matters to people with disabilities and their families:

• National Core Indicators (NCI) Study of Community Living Outcomes. In this project, RTC-CL analyzes data from a national survey that is administered annually by Human Services Research Institute (an RTC-CL partner) to collect information about how people with intellectual and developmental disabilities (IDD) are using services and supports.
• An Updated National Review of Medicaid Home and Community-Based Services (HCBS) for Individuals with Autism Spectrum Disorders (ASD). More states are using ASD-specific waivers for children and youth, but service delivery and the availability of HCBS waivers varies across states, especially for adults with ASD. Understanding these differences can inform efforts to meet the growing need for services and supports for people with ASD.
• Self-direction for Individuals with Intellectual and Developmental Disabilities. Self-direction is an approach to designing long-term services and supports that aims to provide greater control for individuals with disabilities and their closest supporters.
• Family and Individual Needs for Disabilities Supports (FINDS) Survey. RTC-CL developed and conducted this survey in partnership The Arc of the United States to collect information from families about their experiences with caregiving and support. The Center is now analyzing the data.
• Competency-Based Training Intervention for Direct Support Professionals (DSPs) Who Provide Services in Family Home Settings to Improve Outcomes for Individuals with Intellectual and Developmental Disabilities. This study examined a training and coaching model for DSPs working in family homes.
• A National Study of the Effects, Practices, and Innovations in Employment Support for Adults and Transition-Age Youth. In partnership with the Institute for Community Inclusion at the University of Massachusetts Boston, this project developed a comprehensive model of employment support for job seekers with IDD, published widely on the topic of employment services and supports, and generated new knowledge on the use of technology, micro-learning, and data-based decision making for employment consultants and employment provider agencies.
• Supporting Self-Determination of Adults and Transition-Age Youth within the Family Context. This project developed a curriculum for caregivers on how to best support the self-determination of a family member with a disability and established feasibility, usability, and effectiveness of the curriculum delivered via a telepractice model.
• The Effectiveness of Two Approaches to Expand the Social Inclusion of Adults with Intellectual and Development Disabilities Living with Families. Adults with IDD in this study became more active in their communities, their families reported the training as useful, different families shared ideas, and scheduling follow-up meetings with the researchers motivated families to implement their ideas and plans.
• Identifying the Critical Elements Associated with High Fidelity Adoption of Programs that Support an Enhanced Quality of Life for Persons with Intellectual and Developmental Disabilities. This project developed and piloted a detailed survey to assess an organization’s capacity to implement new programming and the resources needed to ensure effective implementation and sustainability.

The RTC-CL strives continually to inform and improve services, systems, and supports so that people with disabilities and their families are fully included in community living. As a result of these studies, one book, 28 book chapters, 114 articles, 61 reports, and 420 presentations have been produced. The current cycle of the RTC-CL (2018-2023) includes studies that extend its research and develop new ways to improve policies and practices. These studies include research on home and community-based services, employment for people with disabilities, testing direct support workforce system interventions, exploring retirement for older adults with IDD, and further expanding FINDS to learn more about family caregiving.