Bridging Research, Policy, and Practice: Centering the Voices of People with Intellectual and Developmental Disabilities

Rehabilitation Research and Training Center (RRTC) on Community Living and Participation Among People with Intellectual and Developmental Disabilities
University of Minnesota, Institute on Community Integration (ICI)

Submitted by Amy Hewitt, Janet Stewart, and Jerry Smith

Focus

The Research and Training Center on Community Living and Participation Among People with Intellectual and Developmental Disabilities (RTC-CL), housed within the Institute on Community Integration (ICI) at the University of Minnesota, is dedicated to improving the lives of individuals with intellectual and developmental disabilities (IDD). Since its establishment in 1998, RTC-CL has advanced community living and participation through community-based research, outreach, training, and dissemination efforts, benefiting individuals with IDD and other disabilities and their communities (ICI, 2023a).

This Knowledge Translation (KT) Casebook entry highlights the dissemination and KT strategies used by RTC-CL during its most recent grant cycle. Notable dissemination strategies include self-published magazines, briefs, and a podcast series. To promote the use of these products, RTC-CL organizes online events, maintains an online self-advocacy platform, hosts conferences, and leverages its professional networks to engage a wide range of audiences. The center also integrates people with IDD and other partners into its planning for these activities, a hallmark of high-quality KT, through three boards representing national, local, and consumer perspectives. In addition, all RTC-CL studies include a co-investigator with a disability.

Context

In the current award cycle, the RTC-CL has prioritized research on community-based and health outcomes for individuals with IDD. Key focus areas include employment, long-term services and supports, self-determination, and social inclusion. Studies have illuminated critical aspects of community living and support systems for people with IDD and currently all projects include a co-investigator with a disability.

The RTC-CL's Understanding Community Living and Participation in the 21st Century through a Multicultural Lens study explores the current state of community living and participation of youth (16+) and adults with IDD from diverse backgrounds, including gender and sexual orientation, race/ethnicity, culture, language, and geographical location across the lifespan. Another study uses National Core Indicators data to examine community outcomes for individuals with IDD, and other targeted research explores long-term support services for both individuals and their families. Research into statewide online training programs for direct support professionals (DSPs) has demonstrated benefits for both the workforce and the people they support, with competency-based training shown to enhance DSP effectiveness in family settings. Additionally, innovations in employment support have expanded opportunities for both youth and adults. Other efforts have concentrated on advancing self-determination, social inclusion, and the adoption of high-quality, life-enhancing programs.

KT Activities

Policy Research Briefs Paired With Archived Online Policy Forums

RTC-CL studies have resulted in a robust body of work, including conference presentations, peer-reviewed publications, technical reports, book chapters, and policy research briefs. These include self-directed services and the accessibility or unmet needs for technology among individuals with IDD.

Among the notable outputs are the Policy Research Briefs, complemented by events, hosted on the Policy Forums platform, that have addressed a wide range of topics with significant policy implications. The Policy Forum events are designed to foster meaningful dialogue among diverse members of the disability community, including self-advocates, family members, professionals, researchers, and policymakers. Through these forums, participants engage in timely, research-informed discussions that bridge RTC-CL’s findings with pressing policy challenges, fostering collaboration and actionable insights.

For example, the Policy Research Brief Overrepresentation of People With Intellectual and Developmental Disabilities Moving Between Large State-run Institutions and the Criminal Legal System identified risk factors for institutionalization and criminal legal system involvement (ICI, 2023b). This brief offered policy recommendations to support affected individuals. Then, to promote awareness and uptake of the brief, RTC-CL created a Policy Forum event involving a web-based presentation and discussion. This brief offered policy recommendations to support affected individuals. As a third complementary strategy, the archived event is featured on the ICI Policy Forum YouTube Channel.

IMPACT Magazine and Conversation Podcast Series

The RTC-CL publishes Impact magazine three times per year, with each issue containing programmatic success stories, research and practice trends, and recommended strategies for improving the lives of people with intellectual, developmental, and other disabilities.

Its subscriber base, including staff of policymakers, exceeds 3,000 and is drawn from a list that RTC-CL maintains. Appealing to educators, community service providers, policymakers or advocates, as well as people with disabilities and their families, Impact provides colorful, yet practical and informative information. With issues about Employment and IDD, Addiction and IDD, and “Disability Rights, Disability Justice,” Impact covers a variety of important topics and has been available in print since 1988. Since 2018, the RTC-CL has expanded its reach by offering a digital version, increasing accessibility for a broader audience.

What grounds Impact as a KT strategy is its commitment to centering the voices of individuals with lived experience, allowing them to share their stories on timely and relevant issues affecting the IDD community. Each issue has a theme that ICI Director Amy Hewitt selects in collaboration with Impact’s managing editor and ICI’s marketing and communications director. Topical experts and people with lived experience from within ICI and the disability community are recruited to identify stories and co-edit the articles. Additionally, the magazine enhances accessibility by providing clear language summaries for many articles and offering a Spanish-language version, ensuring its content reaches and resonates with diverse audiences.

Alongside the magazine, and similar to its pairing of briefs with forum events, ICI produces the “Impact, the Conversation” podcast series that takes a deeper look into topics covered in Impact and gives voice to editors and authors (with and without lived experience of disability). Through the podcast medium, guests have the opportunity to give more life and color to topics examined in the magazine. One example is the podcast’s episode 9, The Jobs Issue: Q&A with Julie Sowash, in which Sowash describes how her company Disability Solutions has found jobs for more than 8,000 workers to date.

Online Platform for Self-Advocates with Intellectual and Developmental Disabilities

RTC-CL has long demonstrated a commitment to community-engaged research and Integrated Knowledge Translation strategies that elevate the voices of self-advocates with IDD. By enabling them to share their stories and perspectives, RTC-CL aims to ensure that its work reflects the priorities and lived experiences of the communities it serves.

In addition to its magazine and podcast, RTC-CL hosts “Self-Advocacy Online,” a platform designed to connect individuals with IDD who are engaged in self-advocacy with valuable resources. These include a self-advocacy blog featuring posts that share personal experiences and videos that highlight stories or educational content to support self-advocacy efforts.

A standout feature of Self-Advocacy Online is “Research for All” a resource where self-advocates and team members present research findings in accessible and engaging formats. These include audio, video, infographics, and animations, making complex information more digestible and empowering individuals to engage with research in meaningful ways.

Impact

The deliberate use of multipronged KT strategies showcased in this Casebook entry underscore the efforts of the ICI and RTC-CL to reach a broad and varied audience and encourage it to use findings from the portfolio of ICI research. Their dissemination efforts are tailored to meet the needs of specific groups, including individuals with IDD, family members, professionals, policymakers, and researchers. Featured articles are further disseminated through RTC-CL’s extensive network of community partners and contributors, broadening their reach.

Although it is difficult to track use outcomes that result from such broad dissemination efforts, Impact is not only distributed by the RTC-CL at conferences; organizers of such conferences have approached the center, requesting the magazine for inclusion in their materials packets.

Contact Information

NIDILRR Project Name: Research and Training Center on Community Living (RTC-CL) | Institute on Community Integration
Parent Organization: University of Minnesota
Physical Address: Institute On Community Integration, 2025 East River Parkway, Minneapolis, MN 55414
Website: https://ici.umn.edu
Key Contact: Amy Hewitt, PhD, hewit005@umn.edu

References