Opinion | Are We Equipped to Care for People With Intellectual, Developmental Disabilities?

Last month, the National Academies of Science, Engineering, and Medicine hosted a 3-day workshop: “Optimizing care systems for people with intellectual and developmental disabilities.” During this workshop, expert panelists, including myself, expressed a shared concern regarding the lack of accreditation standards when educating healthcare professionals to care for persons with intellectual and developmental disabilities.

Low accreditation standards for professional healthcare education programs are contributing to health inequalities that negatively impact the health of people with intellectual and developmental disabilities, a population that is still not officially considered to be medically underserved. When health professionals don’t understand how to care for people with disabilities, it promotes bias in healthcare. As a result, patients with disabilities lose trust in medical care, which can put their lives at risk.

The Impact of Low Accreditation Standards

On Dec. 14, 2021, the Equal Employment Opportunity Commission updated its COVID-19 technical assistance with a new section, in accordance with the Americans with Disabilities Act (ADA), to protect workers who contract COVID-19. These guidelines were set because the impact of COVID-19 on the mind and body can meet the ADA’s definition of a disability. While this disability qualification is important for the fair protection of workers with COVID-induced disabilities, the link between COVID-19 and intellectual disabilities remains underrecognized.

Considering that the second-highest risk factor for COVID-19 diagnoses and deaths is intellectual disability, equitable healthcare for people with intellectual disabilities is especially important during the ongoing crisis. Unsurprisingly, persons living at the intersection of disabilities with racial and ethnic minority identities are experiencing even worse health outcomes related to COVID-19.

A major social determinant worsening these health inequities for patients with disabilities is the limited knowledge and competencies of nurses and physicians, the two largest groups of healthcare professionals.

Higher Accreditation Standards Are Good for Health

In the U.S., one in four adults have disabilities, comprising the largest minority group in the country. In addition, one in six children in the U.S. have developmental disabilities. With almost 85% of adults and 96% of children visiting a medical professional each year, healthcare providers should be better equipped with the necessary knowledge and skills to provide high-quality healthcare to all persons with disabilities.

Accreditation standards help to improve patient health outcomes because accreditation creates a set of quality standards for the education of healthcare professionals and allows healthcare students to transfer credits between institutions of higher learning. Accreditation standards are also important for access to federal and state funding, as well as private insurance.

Who Sets Accreditation Standards?

To be sure, accreditation bodies do exist for the education of healthcare professionals specific to their fields of study. For example, in medicine, there is the Liaison Committee on Medical Education (LCME). In nursing, the most well-known accreditors are the American Association of Colleges of Nursing and the National League for Nursing (NLN). The NLN has also partnered with Villanova College of Nursing to develop the “Advancing Care Excellence for Persons with Disabilities.” This free program can be used by nurse educators to teach nursing students proficiency in disability care — although the program is not required for accreditation.

Yet, the lack of accreditation standards for disability education in medicine and nursing continues, despite legal and other advocacy efforts.

The Patient Protection and Affordable Care Act (PPACA) passed in 2010. Section 5307 of the PPACA is specific to “cultural competency, prevention, and public health and individuals with disabilities training,” and requires that the Secretary of HHS collaborate with health professional societies, licensing and accreditation bodies, the disability community, and others to develop, evaluate, and disseminate disability curricula for inclusion in health professional training.

While the National Council on Disabilities is still pressing for accreditation standards, alliances and partnerships continue to build momentum for higher-quality disability education. Currently, Medical Students with Disabilities and Chronic Illnesses is spearheading an effort to have specific language included in LCME accreditation standards. Furthermore, Core Competencies on Disabilities for Health Care Education, a project that is building consensus on the competencies healthcare providers need to provide quality care to people with disabilities, has been developed to improve health education curricula.

The Role of Collaboration

Collaborative and robust planning models can improve education standards when training healthcare professionals who care for people with intellectual and developmental disabilities. Take, for example, the ECHO (Extension for Community Healthcare Outcomes) Autism program in Missouri. The ECHO Model is a cross-sector effort that democratizes expertise and disseminates best practices to clinicians, educators, and advocates. Tele-mentoring provided by the ECHO Autism virtual learning network helps to improve the skills of primary care providers by providing interdisciplinary expertise from parents and medical and behavioral health professionals. ECHO Autism also offers real-time, localized connection to experts. As a result, the ECHO Model increases access to healthcare for underserved populations with autism.

It’s time for accrediting bodies to get just as serious about developing higher accreditation standards to educate nurses and physicians. Additionally, accreditors could use the Collective Impact Model to create a shared agenda and measurement system to determine the impact of accreditation. By following the design of the Collective Impact Model, leaders in healthcare professional education can build trust and strengthen communication amongst participants and stakeholders to meet the goal of training healthcare professionals to better serve the disability community.

Accreditation standards that improve healthcare professional education will promote better health outcomes for persons with disabilities. Innovative models like ECHO prove the impact of meaningful collaboration between healthcare professionals, practice partners experienced in the field of disabilities, and disability advocates. But, most importantly, the disability community, particularly those with expertise in health advocacy, should be lead consultants when developing curricula language and programming specific to the medical needs of persons with disabilities.

Sarah Ailey, PhD, RN, is professor of nursing at Rush University and a Public Voices Fellow of the OpEd Project. She is the principal investigator for the PATH-PWIDD (Partnering to Transform Health Outcomes with Persons with Intellectual and Developmental Disabilities) program funded by the Administration for Community Living, and the President of the Alliance for Disability in Health Care Education. She is also the mother of an adult son with intellectual disabilities.