Considering Dignity of Risk in the Care of People with Intellectual Disabilities: A Clinical Perspective.

The dignity of risk implies respect for individuals' right to make their own decisions, to participate in a broad range of desired activities, even if those activities have risk, and to expose themselves to potential consequences or learning opportunities. Historically, a more paternalistic approach, done as a benevolent assurance of safety, has been taken with individuals with intellectual disabilities. While optimizing safety, this approach can limit opportunity and, more importantly, limit the dignity of the individual. However, the concern for safety and the sense of responsibility to keep individuals with intellectual disabilities from harm is solidly entrenched and is not without some merit. "Supported decision-making" can offer an alternative to guardianship for some individuals, providing structured processes to enhance full participation. Strategies to involve individuals with intellectual disabilities in their own decision-making and to optimize the safety of those decisions include expanding the discussion of the concept of dignity of risk with family members and care providers of individuals with intellectual disabilities before they turn 18 years old; providing social-skills training and other educational opportunities that promote the likelihood of success in activities and decision-making; and maintaining guardrails when needed to prevent serious harms.

If Not Now, Then When? Taking Disability Seriously in Bioethics.

The impression of bioethicists as "dangerous," as articulated in Mouth Magazine in 1994, has continued to be a theme in the disability movement. We respond to three common responses by bioethicists to this impression-namely, this is from the past, and bioethicists are different now; this is an angry and extremist position; and the Americans with Disabilities Act and other disability rights and justice efforts have solved historical inequities. We draw on the historical record and on our collective experiences as bioethicists engaged in clinical consultation and education and as the founding, former, and current directors of a program focused on disability and rehabilitation ethics to argue that ableism and unexamined assumptions about people with disabilities have persisted in bioethics despite decades of counternarratives, research, and divergent perspectives. Ableism and such assumptions can lead to health care decisions that are prone to bias, mistreatment, and a lack of consideration of viable options for living with disability. As the field of bioethics moves toward certification examinations and as new generations join the field's ranks, these problems need to be rectified with solutions at the individual, interpersonal, and structural levels. It is past time to take disability seriously.

Ableism at the Bedside: People with Intellectual Disabilities and COVID-19.

People with intellectual and developmental disabilities have a higher risk of mortality from COVID-19 than the general population. Providers may assume that this is due to the burden of comorbidities for this population; however, the disparity in mortality persists even when controlling for comorbidities. We review the current policies and practices that may be contributing to this higher level of mortality. We contend that pervasive ableism among medical providers leads to a variation in the medical care options that are provided to people with intellectual disabilities and their families. Due to this bias, poor outcomes for people with intellectual disabilities may become a self-fulfilling prophecy. We make recommendations to address the modifiable factors that are contributing to the higher level of mortality for people with intellectual disabilities who are infected with COVID-19, provide strategies to combat ableism within the medical field, and discuss the unique role of the primary care physician as an advocate.

Drama and Trauma: Unpacking Moral Distress in the Context of Discharge Planning.

This series of personal stories about hospital discharge experiences expose how fraught this transition can be. Not only do the authors reveal personal angst, feelings of endangerment, frank safety problems, lack of structural supports, but even more concerning are their perceptions of callous disregard, lack of adequate preparation and education, and unilateral decision-making by the health care teams. The "invisible hand" of our corporate health care system percolates, with some authors questioning whether the health professionals are advocating for their (i.e., the patient's) best interest or the best interest of their institution. There are also some shining examples though-moments when a health care team member takes the time, listens, problem-solves, advocates and expresses concern. In this commentary I will explore common themes in the narratives, and conclude with some suggestions-some simple, others aspirational, for how to make the discharge process more patient-centered and less traumatic for all moving forward.

Disability activism and non-invasive prenatal testing: A response to Breimer.

In his recent Comment in IJME, Dr Breimer casts disability advocates as "special interest groups" and pits them against the abstracted concept of "women's autonomy." Against this, we assert that, far from only being a conflict of interest category, disability activism related to prenatal screening and testing is a robust part of bioethical debate and scholarship. Here, we disagree with Dr Breimer's characterisation of Non-invasive Prenatal Testing (NIPT) related disability activism as a threat to women's autonomy and respond to the underlying assumptions of his claims. We argue that disability need not be equated only with harm. Instead, we point out the dominant and intractable belief that disability is something to be avoided, which may lead to belief-based moral wrongs. This is the position from which disability activists make claims about the need to expand understandings of disability. Drawing on existing evidence, we find that prenatal testing does not automatically facilitate autonomy, and that NIPT may be even more of a challenge to autonomy than previous testing iterations. We suggest that NIPT should continue to be a phenomenon under close clinical scrutiny, and that ongoing debates and multiple claims-making can only add to our understanding of this phenomenon.

Leading Practices and Future Directions for Technical Standards in Medical Education.

The medical profession first addressed the need for technical standards (TS), defining the nonacademic requirements deemed essential for participation in an educational program, in guidelines published by the Association of American Medical Colleges in 1979. Despite many changes in the practice of medicine and legal, cultural, and technological advances that afford greater opportunities for people with disabilities, the profession's approach to TS largely has not changed over the ensuing four decades. Although physicians with disabilities bring unique perspectives to medicine and contribute to a diverse physician workforce of culturally competent practitioners, they remain underrepresented in the profession.As part of an initiative sponsored by the Association of Academic Physiatrists, the authors describe the need for an updated TS framework, outlining interval changes in the legal and regulatory climate, medical practice, and medical education since the initial TS guidelines were put forth. They conclude by offering eight recommendations and two functional approaches to TS that are consistent with now-prevalent competency-based medical education constructs.The profession's commitment to diversity and inclusion should extend explicitly to people with disabilities, and this stance should be clearly communicated through medical schools' TS and procedures for requesting accommodations. To this end, schools should consider the principles of universal design to create policies and assessments that work for all learners, to the greatest extent possible, without the need for after-the-fact accommodations. A thoughtful and concerted effort along these lines is long overdue in medical education.