Feature Issue on Disability Rights, Disability Justice

The American Association on Intellectual and Developmental Disabilities (AAIDD) and The Arc of the United States collaborate on activities that advance their shared public policy interests related to the support of people with intellectual and developmental disabilities (IDD). Their shared goals are stated in several policy position statements on a wide range of issues, such as advocacy, anti-racism, and justice, that express their authoritative and informed perspective on issues related to IDD. The position statements are publicly available on each organization’s website, and are designed to communicate the organizations’ positions and interests to an audience of policymakers, as well as researchers, journalists, and practitioners. However, while the position statements are understandable by their target audiences, the language is not always accessible to people with IDD who also seek to shape policy.

Just as complex or specialized language can be useful in communicating with policymakers, written materials in plain language are better at connecting with people with IDD who read. Plain language documents are short, use active voice, and connect to the audience’s lived experience to convey complex ideas to a non-expert audience. Importantly, plain language documents are not line-by-line translations of the source material. Instead, they focus on the most important points in a way that the target audience can understand and use in their own lives. Plain language is essential for supporting people with IDD in understanding the information they need to make decisions about their lives.

To make their position statements understandable to an audience of people with IDD who read, AAIDD and The Arc created plain language summaries of their position statements. “Developing and Evaluating the Fidelity and Understandability of Plain Language Summaries of Position Statements,” a research article written by Margaret A. Nygren, Robyn Linscott, Mike Nagel, Michael Atkins, Julie Ward, and Jenny Alexander, explains the methods that AAIDD and The Arc used to develop and get feedback on the new plain language summaries. The article was published in the February 2024 edition of Intellectual and Developmental Disabilities, a multidisciplinary journal for professionals that provides information relevant to policies and practices related to supporting people with IDD.

“The summaries let people know where AAIDD stands on issues,” Nygren said. “AAIDD uses evidence-based arguments, which make for stronger position statements, and the summaries make them accessible to a much broader audience.”

A workgroup of four staff members, including a person with IDD, drafted summaries of position statements on advocacy; responding to the interrelated causes of intellectual and developmental disabilities; anti-racism; and diversity, equity, inclusion, and justice. Each person was assigned to write the first draft of one position statement and then manage its development over three months. After creating the first drafts, the workgroup members met over Zoom to provide feedback and to suggest changes that made the drafts more understandable, while still staying true to the message of the original position statements.

Next, the workgroup shared their summaries and the original position statements with a feedback panel of 12 people with IDD who serve on The Arc’s National Council of Self-Advocates (bit.ly/3V1ofAZ). Panelists discussed the summaries over Zoom and provided written feedback to the workgroup to maximize the accessibility of the summaries. One major change the panel recommended was to include definitions of key terms used in each summary. The panelists required less support to read the plain language summaries than to read the original position statements. Ultimately, the initiative to create plain language summaries succeeded at making AAIDD and The Arc’s joint position statements more understandable for an audience of people with IDD.

Excerpts from the Plain Language Summary of the 2022 Joint Position Statement of AAIDD and The Arc on Advocacy: