Introduction to the Special Issue on National Goals in Health for People With Intellectual and Developmental Disabilities

In June 2024, the American Association on Intellectual and Developmental Disabilities (AAIDD) hosted a small, one and one-half day, in-person only invitational meeting to (a) consider the state of research, practice, and policy in health for people with intellectual and developmental disabilities (IDD) broadly; (b) identify gaps in the research, practice, and policy; and (c) make recommendations that, if implemented, could substantially improve health outcomes for people with IDD over the next 10 years. Participants—representing a diverse mix of disciplines; lived experiences with disability; and professional expertise in research, practice, and policy efforts—were assigned to one of nine thematic strands: Consent and Decision-Making, Disability-Competent Health Care, Ethical Issues, Financing and Delivery Systems, Health Promotion, Issues of Adulthood, Mental and Behavioral Health, Public Policy/Systems Design, and Social Determinants of Health. Strands worked independently on their topic areas to develop broad consensus on priorities and recommendations. Each strand developed a work plan to prepare three documents disseminating its analysis and recommendations: an issue brief, a journal article, and a book chapter.This Special Issue features nine articles that are expected to be of particular interest to students, researchers, healthcare administrators, and policymakers. In addition, nine Issue Briefs were published on the AAIDD website in May 2025. Each Issue Brief describes the most important issues identified by each strand and includes a plain-language summary. The Issue Briefs are designed to be useful to advocates seeking to clarify the most pressing issues with and make recommendations to policymakers and others. It is anticipated that a corresponding book, with individual chapters prepared by each strand, will be published in 2025. The book will provide a concise review of what we know in the nine identified key areas of health care and health outcomes for people with IDD and suggest how that information could inform future developments in public policy, research, and practice. This resource is expected to be useful to policymakers, healthcare providers, teachers, researchers, students, and others.In the year or so since this national goals meeting, substantial changes in U.S. federal infrastructure and policies have occurred that—at first glance—might seem to render the work and recommendations of the meeting strands moot. But there is another perspective to be had.Although it is undeniable that federal agencies and their policies are currently undergoing disruptive change, three additional things about change are also true: First, federal agencies have made dramatic shifts in the past. Second, historically, subject-matter experts have been able to achieve change by skillfully modifying their approach to their audience when delivering key information. Third, evidence-based changes—of individual- and system-level policies and practices—will always be needed to improve health outcomes for people with IDD.Looking back only 50 years, there have been a number of fairly dramatic reorganizations, consolidations, divisions, and renaming of the federal agencies administering the programs that people with IDD rely on today. Until 1979, a cabinet-level department—the U.S. Department of Health, Education, and Welfare (HEW)—oversaw the Social Security Administration and an agency created in 1977 to consolidate the administration of Medicare and Medicaid into single entity, the Health Care Financing Administration (HCFA; Centers for Medicare & Medicaid Services, 2015). In 1980, HEW was divided into two departments, the Department of Education and the Department of Health and Human Services (HHS). In 2001, HCFA was renamed the Centers for Medicare and Medicaid Services (CMS), and SSA became an independent agency.In 1991, the Administration for Children and Families (ACF) was created by merging three entities within HHS: the Office of Human Development Services, the Family Support Administration, and the Maternal and Child Health Block Grant Program (Administration for Children and Families, 2025). Using a social determinants of health lens, one could argue that all ACF programs are relevant to people with IDD, but it is important to highlight three of the several entities that were consolidated within ACF in 2012 to form the Administration for Community Living (ACL): the Administration on Developmental Disabilities; the National Institute on Disability, Independent Living, and Rehabilitation Research; and the President's Committee for People With Intellectual Disabilities.With each federal agency reorganization, and with every change in presidential administration, priorities, personnel, and language have shifted. The rationales for recommendations presented in the articles here remain applicable even as the agencies or programs they reference change or sunset.People who are most successful in communicating with different audiences—including with policymakers—routinely explain concepts in ways that will best resonate with each different audience, a practice sometimes known as "code switching." The articles in this Special Issue provide clear, applicable recommendations aimed at reaching the goal of improved health outcomes for people with IDD. What may still be needed is guidance for those seeking to shape public policies and practices in explaining why these recommendations are important in ways that resonate with the leaders in a changed federal landscape.People with IDD will continue to experience individual and systemic disparities in health outcomes unless policies and practices are shaped by evidence of what works and what does not. Since learning what will work requires, among other strategies, evaluation of data from past interventions against data from new ones, it is crucial to preserve and make accessible information that can be used to inform effective public policies and practices. The articles assembled here provide clear recommendations for research avenues and sources of information that could be used to achieve these goals.The present disruptive changes at the federal level are likely to unfold soon at the state level as well, and such changes are likely to result in both challenges and opportunities. The recommendations provided in the articles in this Special Issue provide a valuable roadmap for improving health outcomes for people with IDD through systematic and coordinated efforts in research, practice, and public policy.Acknowledgment of the National Goals planning group members: Kruti Acharya, Lynda Lahti Anderson, Alixe Bonardi, Carrie Coffield, Melissa DiSipio, Steve Erikson, Susan Havercamp, Margaret Nygren, and Heather Williamson.