“We have met the enemy and it is us”: Healthcare professionals as the barrier to health equity for people with intellectual and developmental disability

In April 1971, cartoonist Walt Kelly's character Pogo realizes that people themselves may be the problem they are trying to solve and declares “We have met the enemy and it is us” (Kelly, 1971). As nursing and midwifery professionals, have we met the enemy and are we willing to acknowledge that as educators, clinicians, scholars, and system leaders we represent major barriers to improving health equity for persons with intellectual and developmental disabilities (PWIDD)? Are we willing to admit that, despite the call for action to “Close the gap” from the Office of the Surgeon General US (2002) more than two decades ago and repeated calls since then (Bowen et al., 2020; Carmona, et al., 2010), we fail to address PWIDD healthcare needs? Have we failed in our curricula, standards, scholarship, and healthcare settings and our continued toleration of widespread ableism and bias toward PWIDD among ourselves and our colleagues? The National Institute on Minority Health and Health Disparities recently declared disparities in populations with disabilities as a research priority, therefore, the purpose of this paper is to strengthen efforts in nursing to “Close the gap” of health disparities with PWIDD. The population of PWIDD experiences higher rates of adverse health conditions, receives less attention from healthcare providers, receives fewer preventative care measures, and has more difficulties in accessing care than populations without intellectual and developmental disabilities, including persons with other disabilities (Hall & Kurth, 2019; Krahn & Fox, 2014). They have higher rates of chronic illnesses such as cardiovascular disease, asthma, diabetes, and hypertension (Friedman, 2021) and their life expectancy is almost 20 years below that of the general population (Havercamp & Scott, 2015; Krahn & Fox, 2014). They are more likely to be victims of abuse and experience twice the rate of violence that persons without disabilities experience (Casteel et al., 2008; Wigham & Emerson, 2015). The population of persons with any disability represents 1/3 to 1/2 of all people killed by law enforcement (Mueller et al., 2019). Additionally, the intersectionality of racism, discrimination, and intellectual disability amplifies these health disparities and potentiates poorer health outcomes and quality of life for PWIDD who are also members of other marginalized populations (Hassiotis, 2020; Magaña et al., 2012; Yee et al., 2018). Many health disparities among PWIDD are the result of the social determinants of health and not just existing health conditions. This population experiences higher rates of poverty and decreased access to affordable housing and accessible transportation (Emerson, 2007; McMahon et al., 2022). They may live in unsafe neighborhoods or have limited opportunities to interact with their communities and experience social isolation associated with poorer mental health (Emerson et al., 2011; Friedman, 2021; Frier et al., 2018; Iezzoni, 2011). Any efforts to reduce the health disparities among this population must deal with the root causes of the social determinants of health realizing that barriers to equitable healthcare are also created and sustained by biases and treatment from healthcare professionals (Gréaux et al., 2023). PWIDD are part of the broader population of people with disabilities, who make up more than a quarter of the adult population in the United States (Centers for Disease Control, 2023). Among physicians, only 56.5% strongly agreed that they welcomed patients with disabilities into their practices and only 40.7% felt competent in their ability to provide the equitable care to patients with disabilities versus patients without disabilities (Iezzoni et al., 2021). A synthesis of 63 international studies identified barriers to accessing equitable healthcare for PWIDD which include: (1) health professionals lack of training in care of PWIDD, (2) health professionals limited knowledge of how to support and care for people with IDD, and the development of negative attitudes toward this population. Other barriers include health professionals' lack of effective communication skills, which may lead to diagnostic overshadowing, inadequate patient assessments, and inappropriate treatments (Guttman et al., 2021). Additionally, feelings of fear and embarrassment experienced by the PWIDD can result from prior trauma-inducing healthcare experiences and they may have feelings of anxiety and discomfort in healthcare settings that lack sensory safe and/or accessible spaces to accommodate their needs (Houck & Dracobly, 2022). Finally, health systems have failed to provide adequate time and appropriate equipment to complete an accurate assessment of the health status of PWIDD (Doherty et al., 2020). Negative attitudes of health professionals and non-health professionals toward PWIDD across multiple healthcare settings was a disturbing recurring theme in a systematic review (Doherty et al., 2020). PWIDD may experience ableism in different ways ranging from benevolence or indifference to hostility. People may infantilize individuals from this group or become intrusive and invade their privacy. PWIDD may be subjected to discriminatory and offensive language or be ignored in general (Nario-Redmond et al., 2019). Ableism may be combined with other forms of discrimination such as agism, prejudice, and stereotyping which leads to social oppression (Bogart & Dunn, 2019; Friedman & VanPuymbrouck, 2021; VanPuymbrouck et al., 2020). The negative attitudes and bias play a major role potentiating the health disparities. One strategy to address ableism and bias is to include education on the health and healthcare needs of PWIDD in health professionals' education. This includes becoming familiar with the language of the laws enacted to support this population. For example, Section 5307 of the 2010 Patient Protection and Affordable Care Act (2010) specifically required the development, evaluation, and dissemination of disability curricula for inclusion in health professional training. To date there is little to no evidence that this is being implemented (Bowen et al., 2020; Seidel & Crowe, 2017; Smeltzer, et al., 2015). Nursing and midwifery leadership are responsible for failing to address disability in education and training. The acknowledged barriers to integration of disability content into all health professional curricula include the lack of faculty with expertise in disability care, limitation in faculty time, absence of teaching resources, and competition over what content should take priority in curricular revisions (Bowen et al., 2020; Havercamp et al., 2021; Smeltzer, et al., 2010). What is not acknowledged is the role of bias toward PWIDD in key leadership organizations that influence curricular, accreditation, licensure, and credentialing decisions. There have been a few critical contributions to disability education in nursing. In 2019, The American Nurses Association issued an important statement on the Nurse's Role in Providing Ethically and Developmentally Appropriate Care to People with Intellectual and Developmental Disabilities (2019). The National League for Nursing has considerable materials on its website under Advancing Care Excellence for Persons with Disabilities (2017). More recently Sigma Theta Tau published the textbook Delivering Quality Healthcare for People with Disability by Dr. Suzanne Smeltzer (2021). Unfortunately, responses by critical nursing leadership to add disability education to nursing programs has been halfhearted. The American Academy of Nursing is described as an organization of the “most accomplished leaders in education, management, practice, and research” in nursing, and a thorough search of its website using the term “disability(ies)” yields one discussion of the role of caregivers (2021). The AAN's 2023 health policy conference did host an interactive panel entitled “A Focus on People with Disabilities: Championing Change for Policy Action” (Aelong et al., 2023) which may portend the beginning of needed change. The American Association of Colleges of Nursing (2020, 2021) describes itself as “the national voice for academic nursing” that “works to establish quality standards for nursing education.” In its 2020 and 2021 publications of, The Essentials: Core Competencies for Nursing Education the population of PWIDD is ignored. The term “disability” is used only twice in the glossary of the document. The first use of the term correctly notes that populations facing health disparities include people with disabilities. The second use of the term defines disability as a reflection of health inequities (2021) but fails to recognize that health is one part not the whole of their experience. This language is like the current mission statement of the National Institutes of Health (NIH, 2021), which has been criticized as biased (Swenor et al., 2023). We note that subsequently the NIH is now changing its language (NIH, 2023a). Achieving health equity for PWIDD requires advancing policies, confronting bias, expanding research, and attending to the SDOH. It is difficult to imagine any significant progress in achieving health equity for this population if the organizations providing leadership and setting educational and accreditation standards and healthcare educators themselves continue to neglect the need for disability education. Current nursing, midwifery, and health professions curricula will continue to neglect the need for disability education in their programs without intentional partnerships. Without strong partnerships among scholars, advocates, and leading nursing organizations to address disability, significant progress in achieving health equity for this population will be limited. Without a true commitment to integrating content on disability across programs nursing and midwifery professionals will continue to lack the contemporary evidence-based language, knowledge, skills, and competencies to provide equitable and quality care to these individuals. In 2019, a milestone in disability education for health professionals was achieved with the Alliance for Disabilities in Health Care Education release of the Core Competencies on Disability in Healthcare Education Alliance for Disability in Health Care Education (ADHCE, 2019). This was followed by the National Consensus for Disability Content in Health Care Education (Havercamp et al., 2021). This document outlines the core competencies, subcompetencies, and principles that should guide the development and evaluation of educational programs that prepare health professionals to care for persons with disabilities. The document highlights important content areas and suggests learning activities. As a practice profession, experiential learning with deep reflection is essential. All nursing programs include clinical experience, with service-learning, simulation, case studies, role-play, student projects, and capstones. It is critical to include robust experiential learning activities with PWIDD for students to build their knowledge, person-centered care competencies, and mitigate any negative attitude or bias that they may have. Having students involved in clinical experiences, quality improvement projects or clinical leadership opportunities can improve their competencies, the healthcare experiences of PWIDD, and health systems' proper accommodation of PWIDD (Ailey & Friese, 2022; Ailey et al., 2015; Hahn et al., 2012) (S. Ailey, Personal communication, 2023, Ailey, Comments on: The Essentials: Core Competencies for Professional Nursing Education) and how people with disabilities are addressed). Simulations based on case studies of PWIDD or that employ disability self-advocates as standardized patients strengthen deep learning. These also provide opportunities for self-advocates to socialize within their communities and have meaningful work experiences. National organizations and initiatives such as the Alliance for Disability in Health Care Education (2018), the Golisano Institute for Developmental Disability Nursing (GIDDN, 2023), and a nurse-led Administration for Community Living-funded program (2020), Partnering to Transform Health for Persons with Intellectual and Developmental Disabilities (PATH-PWIDD, 2023), have initiatives aimed at developing interprofessional education and practice experiences that can be integrated into existing health professions curricula. These learning activities can also be integrated in continuing education learning models for healthcare professionals. On September 26, 2023, the NIH announced that it would recognize persons with disabilities as a population with health disparities and updated its mission (NIH, 2023c) to ensure the inclusion of the needs of people with disabilities in its research programs. The decision was made in consultation with the Agency for Healthcare Research and Quality and a report submitted by the National Institute on Minority Health and Health Disparities advisory council. This report was based on input from the disability community and a thorough review of the state of the science on health disparities for this population. Concurrent with the announcement, the NIH announced a notice of funding opportunities in the areas of the intersectionality of race, ethnicity, socioeconomic status, and disability on healthcare access and outcomes (PAR-23-309; NIH, 2023b). NIH had earlier announced that it would update its mission statement following a period of public comment. The NIH's decision to recognize person with disabilities as a population with health disparities paves the way for the funding of research to investigate the barriers to health equity that are outlined in this editorial. This research will inform interventions to address these barriers. However, this new opportunity requires building capacity of nursing and midwifery researchers. This could be facilitated through collaboration and mentorship opportunities with existing researchers at the University Centers for Excellence in Developmental Disabilities Education, Research, and Service programs (Association of University Centers on Disability, 2011). Other opportunities include the Leadership Education in Neurodevelopmental and Related Disabilities interprofessional training programs (Association of University Centers on Disability, 2018; Health Resources and Services Administration, 2023). Capacity building also requires establishing meaningful relationships by networking with organizations like the International Association of the Scientific Study of Intellectual and Developmental Disabilities (https://iassiss.org) or Special Olympics Research program (https://www.specialolympics.org/our-work/research). If we are willing to acknowledge how as educators, clinicians, researchers, and system leaders, we have contributed to health inequities for the PWIDD population, then we are ready to dismantle the identified barriers to health equity. There are multiple paths forward to attaining health equity which involve policy changes, strengthening health systems, and expanding research opportunities. Each of these paths requires significant expertise in the needs of the PWIDD population. Most importantly, confronting discriminatory behaviors and biases, and providing disability education for nurses, midwives, and all health professionals are key first steps to achieving health equity for the PWIDD population. All authors meet the criteria for authorship stated in the Uniform Requirements for Manuscripts Submitted to Biomedical Journals. Drs. Dianne C. Miner, Sarah H. Ailey, Holly Brown, and Amyela Adarlo conceptualized and developed the editorial content. All other authors (Drs. Roy A. Thompson and Allison Squires) contributed to the content integrity, critical revisions, and final approval of the editorial. The authors declare no conflict of interest. No data were collected for this manuscript.