Special Issue Introduction: Addressing Healthcare Inequities in Intellectual Disability and Developmental Disabilities.

03Original abstract

This Addressing Healthcare Inequities in IDD special issue advances current thinking and research to increase our understanding of health inequities and approaches to improve health care for people with intellectual and developmental disabilities (IDD). In this introduction, we briefly describe health and healthcare inequities for children and adults with IDD, arguing that the quest to improve healthcare quality must include an intentional pursuit of equity. Two articles follow that analyze existing data by factors including diagnosis and other characteristics to explore healthcare disparities. The final three studies explore approaches to advance trainee and clinician competencies to provide quality care to patients with IDD. The inclusion of Dr. Karrie A. Shogren's American Association on Intellectual and Developmental Disabilities (AAIDD) 2022 Presidential Address extends the discussion with a robust reflection on systemic barriers and offers a vision for equity and inclusion that has implications for health care as an aspect of every good life.In 2001, a seminal report published by the Institute of Medicine's Committee on Quality of Healthcare in America Project, “Crossing the Quality Chasm,” provided clear evidence of gaps in the quality of healthcare and catalyzed the establishment and growth of quality improvement efforts across the complex systems of healthcare. “The Triple Aim,” developed and described by Berwick and colleagues (2008), offered guidance to move towards enhancing patient experience, reducing cost, and optimizing population health. As systems have engaged with this and other quality improvement frameworks, significant disparities based on race, ethnicity, income, and disability status have become increasingly apparent. For example, people with IDD experience inequities in health and health care (Havercamp & Scott, 2015; Krahn & Fox, 2014). People with IDD have high rates of chronic health conditions, yet poorer access to health care compared to people without disabilities (Reichard et al., 2011). They report barriers to accessing health care, high rates of unmet health care needs, and dissatisfaction with the health care they receive compared to people without disabilities (Ali et al., 2013; Doherty et al., 2020; Prokup et al., 2017; World Health Organization [WHO], 2011). Disability-related health inequities are compounded when people with IDD have other marginalized identities, such as those based on race, ethnicity, sexual orientation, gender identity, poverty, or rural place of living (Courtney-Long et al., 2017; Dembo et al., 2022; Magaña et al., 2016). Inequities in health outcomes are understood to result, in part, from differences in social circumstances (e.g., discrimination, poverty) that affect health (Angelelli et al., 2022; Krahn et al., 2006), disparities in healthcare access (Lauer et al., 2021), and inequities in data collection and failure to monitor their health (e.g., Havercamp & Krahn, 2019; Fox et al., 2015; WHO, 2021). The global COVID-19 pandemic dramatically illustrates that the burden of infectious disease falls most heavily on those populations already disadvantaged by systemic discrimination and oppression, including people with IDD (Ruprecht et al., 2021; Turk et al., 2020).The pursuit of healthcare equity for patients with IDD depends on health system research that identifies people with IDD in the data as well as other marginalized identities, where possible. The next two articles in this special issue leverage existing health services data to explore healthcare disparities. Acosta and colleagues used the Nationwide Emergency Data Sample (NEDS) to compare the rates of emergency department visits leading to hospital admission and reasons for hospital admission as a function of intellectual disability (ID) diagnosis, age group, and other characteristics. In the third article, McMaughan and colleagues present the results of a cross-sectional analysis of the 2016 Kids' Inpatient Database to discover the most frequent principal diagnoses for inpatient stays among children and youth with autism, the costs associated with these hospitalizations, and the length of hospital stays. Understanding these factors is needed to advocate for and develop appropriate community-based support services to reduce the burden of hospitalizations and to inform the development of value-based care models. Taken together, these articles demonstrate opportunities to use existing health service datasets to identify disparate healthcare utilization patterns and outcomes in people with IDD.“The Quadruple Aim” introduced the quality priorities of clinician work-life and experience in 2014 (Bodenheimer & Sinsky, 2014). Healthcare professionals hold negative and ableist attitudes and beliefs about disability and report feeling uncomfortable and unprepared to meet the health needs of patients with disabilities (Desroches et al., 2019; Iezzoni et al., 2021). Without explicit disability training, health care providers are likely to view disability as a negative health outcome and to hold low expectations for the function and quality of life of individuals with disabilities. Training can prepare clinicians to communicate effectively and provide accessible, patient-centered assessment and treatment to patients with disabilities. In 2022, the National Council on Disability released a policy brief, Health Equity Framework for People with Disabilities, calling for comprehensive disability clinical-care curricula and disability competency education in all U.S. medical, nursing, and other healthcare professional schools (National Council on Disability, 2022).The next three articles in this special issue have direct implications for health care delivery for people with IDD, emphasizing the critical role of training and experience of clinicians. Recognizing the relationship between feeling prepared to care for a patient and positive patient experience, the Golub-Victor team explored perceived self-confidence to care for adults with ID among students in interprofessional healthcare training programs. This study explored the influence of several factors on trainee's self-confidence. Program-related characteristics such as the number of years in the program, healthcare discipline, and individual characteristics such as gender identity, and prior experience or training in ID are described. In the fifth article, Sheppard and colleagues describe an innovative school-clinic partnership where medical students spent a day with a special education faculty member observing children with disabilities in school settings. This pilot study explored the feasibility of implementing this experiential learning activity during a pediatric clerkship and, similar to Golub-Victor and colleagues, students' perceived competence. In the sixth article, Berens and colleagues explore the feasibility, acceptability, and impact of a behavioral intervention to reduce the need for sedation, general anesthesia, and restraint in dental care for adults with IDD.In the final article, taken from her 2022 AAIDD Presidential Address, Shogren likens ableism to racism and sexism in the harm it causes people with disabilities and its insidious nature. She calls on us to 1) recognize and name systemic barriers including ableism, and 2) take action to break down these barriers to advance equity.As editors of this special issue, we have learned much from the contributing authors and are appreciative of readers who will use these findings to improve health care for children and adults with IDD. We hope this special issue inspires readers to seek opportunities to identify and dismantle barriers to equity in health and health care for people with IDD.

Intellectual and developmental disabilities, 2022 · doi:10.1352/1934-9556-60.6.449