Five-year grant to support KU project’s goal to make disability data accessible and inclusive for broad audiences

LAWRENCE — Numbers alone can’t tell a story. That’s the foundation of a project now based at the University of Kansas that takes volumes of raw federal and state expenditure data and distills that information for everyone — including policymakers, service providers and individuals with developmental disabilities and their families — to help them make the most informed decisions.

With the support of new $2.25 million federal grant, the project, called the State of the States in Intellectual and Developmental Disabilities, is poised to build on its more than 40 years of financial information translation and dissemination to bring those data stories to new audiences.

The five-year grant from the Association for Community Living (ACL), a part of U.S. Health and Human Services, is one of only three Ongoing Longitudinal Data Projects of National Significance funded by the agency. Each of the ACL projects focus on collecting and analyzing national, longitudinal trends for people with intellectual and developmental disabilities, including information about residential services, employment services and spending on supports for people with intellectual and developmental disabilities.

In addition to funding its core longitudinal study of financial data, the grant will support initiatives to evaluate the accessibility and efficacy of storytelling platforms, training for self-advocates who engage with policymakers, raise the visibility of programs available for Tribal Nation members and improve technology accessibility and innovation with a new industry partner, Adobe.

Emily Shea Tanis, associate research professor at the Kansas University Center on Developmental Disabilities at the KU Life Span Institute, leads the project and is a cognitive accessibility researcher. She said that data accessibility is one of the key drivers of the project, which makes housing it in a university research setting ideal.

“I think there’s a sense that making data accessible only matters in certain contexts, but it affects every discipline,” Tanis said. “That includes everything from basic data representations such as charts and graphs, to the icons or symbols used to represent ideas, to the way that we share information that has the power to improve people’s lives — we need to communicate information so that we are consciously inclusive of all audiences.”

The new grant fully funds the State of the States at KU, where it has been based since 2021. It was previously housed at Colorado University. The project began in 1982 at the University of Illinois-Chicago.

The project includes quarterly webinars, comprehensive project reports, customized data briefs, special study reports and interactive data visualizations based on the data it collects and analyzes.

New components for the 2023-2027 funding:

• A partnership with the design and technology company Adobe to collaborate on an Accessible Iconography Project, an effort to investigate and design a series of cognitively accessible icons for the intellectual and developmental disability community for knowledge translation.
• A project with the University of North Carolina-Chapel Hill to evaluate different storytelling templates to communicate data, which can be used by self-advocates using data to affect policy and practice. The group will explore magazine-style visualizations, posters, charts, slideshows and a method called data comics.
• A program to train five cohorts of 10 trainees through Association of University Centers on Disability programs to advance leadership in policy, education and practice.
• Data literacy training for members of the American Network of Community Options and Resources (ANCOR) to help members with decision-making and advancing state policy.
• Providing a customized training series for state Developmental Disability Council Executive Directors to use national data in developing their five-year plans.
• Support access to public intellectual and developmental disability services and supports for Tribal Nation members through the Black Feathers podcast.

Each of the initiatives supplement the core responsibility of the project to investigate determinants of public spending for intellectual and developmental disabilities services in the United States.