Intellectual Disability Policy as Developed, Expressed, and Evaluated in AAIDD/The Arc Joint Statements: The Role of Organization Position Statements.
AAIDD and The Arc turn member votes into policy-shaping statements, and Ruth et al. show how the machine works so BCBAs can jump in early.
01Research in Context
What this study did
Luckasson et al. (2017) looked at how AAIDD and The Arc write joint position statements. They read every shared statement the two groups had issued. They traced how each one was drafted, edited, and used to sway disability policy.
The paper is a narrative review, not an experiment. It maps the process, not outcomes.
What they found
The groups treat statements as living tools. Drafts pass through member vote, public comment, and board approval. Once released, the statements guide lawmakers, funders, and service agencies.
No data on client change are given. The review simply shows the pathway from idea to policy.
How this fits with other research
Johnson et al. (2009) showed how the 11th-edition AAIDD manual could push policy toward individualized, community-based supports. Luckasson et al. (2017) later gather these earlier efforts under one roof.
Luckasson et al. (2013) and Tassé et al. (2013) supplied concrete wording for terms and ICD codes. The 2017 review folds those pieces into the bigger story of joint statement craft.
Thurm et al. (2022) keep the chain alive. After 2017 they issued new guidance on using words like "condition" versus "disability." The process Ruth mapped in 2017 is still running today.
Why it matters
If you write reports, testify at IEPs, or shape agency policy, you are affected by these statements before you see them. Knowing the cycle lets you comment early and align your language with the final rules. Watch for draft postings on AAIDD and The Arc sites. Submit comments so the next policy reflects ABA evidence, not just tradition.
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02At a glance
03Original abstract
The American Association on Intellectual and Developmental Disabilities (AAIDD) and The Arc of the United States (The Arc) have a long history of joined efforts to develop, express, and evaluate disability policies. These efforts have resulted in a series of formal statements on critical issues such as education, healthcare, human rights, and criminal justice. Their joint efforts further important policy goals including providing clear strong communication about important policy values and directions, promulgating key principles of high quality supports and services, affirming best professional practices, and emphasizing personal outcomes. In addition, the joint efforts (a) affirm important aspects of organization identity; (b) enhance the organizations' abilities to assure the input of a wide variety of perspectives; (c) engage members' expanded ranges of experiences and talents; (d) multiply staff and leadership resources; (e) increase communication strength and avenues; and (f) establish processes for timely review and revision of policies as critical disability issues arise or change, and new opportunities for policy integration and advancement occur. This article describes the processes used to develop, express, and evaluate the position statements; summarizes the policy content of several joint statements; and discusses the role of these organization position statements.
Intellectual and developmental disabilities, 2017 · doi:10.1352/1934-9556-55.4.269