Revising NIH's Mission Statement to Remove Ableist Language.

This Viewpoint emphasizes the importance of policy statements using "person-first" language to mitigate discrimination against people with disabilities and to boost modern views in the medical and research communities.

Impairment and Disability Identity and Perceptions of Trust, Respect, and Fairness.

Importance: Most studies use impaired functioning alone to specify populations with disabilities. However, some people with functional impairments do not identify as disabled. With functional status-based definitions, studies have shown disparate care quality for people with disabilities. Objective: To examine whether impairment and disability identity have different associations with perceived health care experiences and explore factors associated with disability identification. Design, Setting, and Participants: This cross-sectional study used a nationally representative survey of US adults conducted from April 20 through May 31, 2021, and analyzed between June 1 and August 31, 2022. Survey participants were 1822 English- or Spanish-speaking adults responding either online or via telephone. Exposures: Using 8 survey questions, participants were grouped according to presence of impairment and disability identity. Main Outcomes and Measures: Likert scale measures of trust, respect, and fairness (henceforth, procedural justice measures) were dichotomized. Sociodemographic characteristics and rates of procedural justice responses were compared across groups. Multivariable logistic regressions adjusting for baseline characteristics were performed to (1) estimate associations of impairment and disability identity with perceptions of procedural justice and (2) explore factors associated with disability identification. Analyses applied survey weights. Results: Of 6126 individuals invited to participate, 1854 (30.3%) completed the survey. Thirty-two were excluded due to unreportable gender, for a final analytic sample of 1822 participants. Participants with impairments (n = 816; mean [SD] age, 48.1 [17.0] years; 51.2% women, 48.8% men) had worse perceptions on 7 of 10 procedural justice measures (crude) compared with those without impairments (n = 1006; mean [SD] age, 49.6 [18.1] years, 55.1% female, 44.9% male). Among respondents with impairments, those who did (n = 340) vs did not (n = 476) identify as disabled gave better ratings for clinician communication efforts (a lot of effort, 38.8% vs 31.0%) and having health goals understood (understood very or fairly well, 77.2% vs 70.1%) but gave worse ratings for respect (almost never felt inferior or talked down to, 66.1% vs 59.1%). Disability identification was associated with more reports of unfair treatment (31.0% vs 22.4%; adjusted odds ratio, 1.65; 95% CI, 1.12-2.42) and of being unafraid to ask questions or disagree (50.5% vs 40.1%; adjusted odds ratio, 1.51; 95% CI, 1.04-20.19). Income and employment were associated with disability identification. Conclusions and Relevance: In this cross-sectional survey study of US adults, health care perceptions differed between groups defined by impairment status and disability identity. These findings suggest that, alongside functional measures, health systems should capture disability identity to better address disparities for people with impairments.

Calling on the USPSTF to Address Ableism and Structural Ableism.

In this Viewpoint, the authors urge the USPSTF to undertake a comprehensive effort to ensure its recommendations systematically consider the effects of ableism and structural ableism on individuals with disability.

Caring for Adults With Significant Levels of Intellectual Disability in Outpatient Settings: Results of a National Survey of Physicians.

Between 1% and 2% of the U.S. population has an intellectual disability (ID) and often experience disparities in health care. Communication patterns and sedation use for routine medical procedures are important aspects of care for this population. We explored physicians' communication patterns and sedation use in caring for patients with significant levels of ID through a mailed survey of 1,400 physicians among seven specialties in outpatient settings (response rate = 61.0%). Among physicians who saw at least one patient with significant levels of ID in an average month, 74.8% reported usually/always communicating primarily with someone other than the patient. Among specialists, 85.5% (95% CI: 80.5%-90.5%) reported doing so, compared to 69.9% (95% CI: 64.4%-75.4%) for primary care physicians (p < 0.001). Also, 11.4% reported sedating at least one patient with significant levels of ID for a routine procedure. Three quarters of physicians reported communicating primarily with persons other than the patient usually or always-an approach that, in some instances, may not align with best medical practice. The percentage of physicians who report sedating at least one individual is associated with significant ID and the physician's volume of patients with significant ID.

Accommodating hearing loss in outpatient physician offices in the U.S.

BACKGROUND: Approximately 16.2 million Americans ages 18 and older (5.7%) report being deaf or having serious difficulty hearing. Hearing loss impedes effective communication during clinical encounters putting patients' safety at risk. A large fraction of Americans with Disabilities Act lawsuits addresses whether providers offered auxiliary aids and services required to ensure effective communication. OBJECTIVE: Examine use of different hearing accommodations for deaf or hard of hearing patients by U.S. physicians. METHODS: We surveyed randomly selected physicians nationwide representing 7 specialties about their reported use of 8 types of accommodations when communicating with adult outpatients who are deaf or have significant difficulty hearing, even with hearing aids (overall weighted response rate = 61.0%). We performed a descriptive analysis of responses, using survey sampling weights. RESULTS: Among the 526 physicians in this analysis, most were male, white, urban, and practiced in community-based practices. Overall, 81.5% (SE = 1.9) reported that patients with significant hearing limitations get worse quality health care than others. Among participants, 49.8% (2.4) reported never using an in-person sign language interpreter hired by the practice, and 63.2% (2.4) never use video remote interpreting. In contrast, 30.7% (2.1) always and 29.8% (2.2) usually speak louder and slower to patients with significant hearing limitations. None of the 8 accommodations were always or usually used by 8.9% (1.3) of participants. CONCLUSIONS: More than 32 years after the Americans with Disabilities Act, most physicians do not offer accommodations sufficient to ensure effective communication with adult outpatients with significant hearing limitations.

Best practices to reduce COVID-19 in group homes for individuals with serious mental illness and intellectual and developmental disabilities: Protocol for a hybrid type 1 effectiveness-implementation cluster randomized trial.

BACKGROUND: People with serious mental illness (SMI) and intellectual disabilities and/or developmental disabilities (ID/DD) living in group homes (GHs) and residential staff are at higher risk for COVID-19 infection, hospitalization, and death compared with the general population. METHODS: We describe a hybrid type 1 effectiveness-implementation cluster randomized trial to assess evidence-based infection prevention practices to prevent COVID-19 for residents with SMI or ID/DD and the staff in GHs. The trial will use a cluster randomized design in 400 state-funded GHs in Massachusetts for adults with SMI or ID/DD to compare effectiveness and implementation of "Tailored Best Practices" (TBP) consisting of evidence-based COVID-19 infection prevention practices adapted for residents with SMI and ID/DD and GH staff; to "General Best Practices" (GBP), consisting of required standard of care reflecting state and federal standard general guidelines for COVID-19 prevention in GHs. External (i.e., community-based research staff) and internal (i.e., GH staff leadership) personnel will facilitate implementation of TBP. The primary effectiveness outcome is incident SARS-CoV-2 infection and secondary effectiveness outcomes include COVID-19-related hospitalizations and mortality in GHs. The primary implementation outcomes are fidelity to TBP and rates of COVID-19 vaccination. Secondary implementation outcomes are adoption, adaptation, reach, and maintenance. Outcomes will be assessed at baseline, 3-, 6-, 9-, 12-, and 15-months post-randomization. CONCLUSIONS: This study will advance knowledge on comparative effectiveness and implementation of two different strategies to prevent COVID-19-related infection, morbidity, and mortality and promote fidelity and adoption of these interventions in high-risk GHs for residents with SMI or ID/DD and staff. CLINICAL TRIAL REGISTRATION NUMBER: NCT04726371.

Delayed Medical Care And Unmet Care Needs Due To The COVID-19 Pandemic Among Adults With Disabilities In The US.

Pandemic-related disruptions in access to medical care services, along with elevated rates of comorbidity, increase the risk for severe illness and death from COVID-19 for people with disabilities. Analyzing data from the 2020 National Health Interview Survey, we examined the impact of the COVID-19 pandemic on adults' access to medical care services by presence and type of disability. Adults with disabilities, including in each disability category, experienced significant disparities in delayed and unmet need for medical care during the first year of the COVID-19 pandemic. Improving data collection on disabled Americans according to disability status and type of disability, designating people with disabilities as a Special Medically Underserved Population under the Public Health Services Act, and incorporating standardized disability data in electronic health record systems would inform policies, programs, and interventions to achieve equitable access to high-quality medical care services that meet the needs of all people with disabilities during the COVID-19 pandemic and beyond.

Have Almost Fifty Years Of Disability Civil Rights Laws Achieved Equitable Care?

For almost fifty years, federal civil rights laws such as Section 504 of the Rehabilitation Act of 1973, the Americans with Disabilities Act (ADA) of 1990 and the ADA Amendments Act of 2008, and Section 1557 and other provisions of the 2010 Patient Protection and Affordable Care Act have prohibited discrimination against Americans with disabilities, including in health care. Despite these laws, disabled Americans continue to experience disparities in health and health care, from preventive care to home and community-based services. In its 2022 Health Equity Framework for People with Disabilities, the National Council on Disability highlighted some of these disparities and recommended remedies. To explore these concerns, this article examines disability inequities and potential solutions within six areas. It concludes by recommending the ratification of the 2006 United Nations Convention on the Rights of Persons with Disabilities to reinvigorate US efforts to maximize the health and dignity of disabled Americans and support their full participation in the community.

'I Am Not The Doctor For You': Physicians' Attitudes About Caring For People With Disabilities.

People with disabilities face barriers when attempting to gain access to health care settings. Using qualitative analysis of three physician focus groups, we identified physical, communication, knowledge, structural, and attitudinal barriers to care for people with disabilities. Physicians reported feeling overwhelmed by the demands of practicing medicine in general and the requirements of the Americans with Disabilities Act of 1990 specifically; in particular, they felt that they were inadequately reimbursed for accommodations. Some physicians reported that because of these concerns, they attempted to discharge people with disabilities from their practices. Increasing health care access for people with disabilities will require increasing the accessibility of space and the availability of proper equipment, improving the education of clinicians about the care of people with disabilities, and removing structural barriers in the health care delivery system. Our findings also suggest that physicians' bias and general reluctance to care for people with disabilities play a role in perpetuating the health care disparities they experience.

Dignity of Risk and Living at Home Despite Severe Disability.

For Americans with significant disability, decisions about where to live are common flashpoints for the dignity of risk principle. Typically, a health-care professional, like the person's primary care physician, argues that the person is unsafe living at home and therefore must enter a nursing home. However, most people-even with extensive activities of daily living support needs-want to remain home in their communities. The belief that nursing homes offer safer residential environments is unproven and highly suspect. Furthermore, removing people from their personal home comforts diminishes their quality of life. Nonetheless, despite the clear moral imperative of the dignity of risk principle, many factors in the United States impede people with significant disability from remaining at home. Ableist and stigmatized attitudes of physicians about quality of life among people with disability are potential contributors. Few people have adequate financial resources to afford the personal assistance services (PAS) they need for daily basic supports. Medicaid, the major public payor for PAS, is difficult to join, varies widely by state, and has long waiting lists for home and community-based services. These issues are explored using stories from the author's friend Michael, who has significant physical disability and lives home alone.

Patient perceptions of in-home urgent care via mobile integrated health.

OBJECTIVES: Emergency department (ED) crowding poses a severe public health threat, and identifying acceptable means of treating medical conditions in alternative sites of care is imperative. We compared patients' experiences with in-home urgent care via mobile integrated health (MIH) vs urgent care provided in EDs. STUDY DESIGN: Survey, completed on paper, online, or by telephone. We surveyed all patients who received MIH care for an urgent health problem (n = 443) and consecutive patients who visited EDs for urgent care (n = 1436). METHODS: Study participants were members of a managed care plan who were dually eligible for Medicare and Medicaid, 21 years or older, and treated either by MIH or in an ED for nonemergent conditions around Boston, Massachusetts, between February 2017 and June 2018. The survey assessed patients' perceptions of their urgent care experiences. RESULTS: A total of 206 patients treated by community paramedics and 718 patients treated in EDs completed surveys (estimated 66% and 62% response rates, respectively). Patients treated by MIH perceived higher-quality care, more frequently reporting "excellent" (54.7%) or "very good" (32.4%) care compared with ED patients (40.7% and 24.3%, respectively; P < .0001), and were significantly more likely to report that decisions made about their care were "definitely right" compared with patients treated in the ED (66.1% vs 55.6%; P = .02). CONCLUSIONS: Patients appear satisfied with receiving paramedic-delivered urgent care in their homes rather than EDs, perceiving higher-quality care. This suggests that in-home urgent care via MIH may be acceptable for patients with nonemergent conditions.

Cancer detection, diagnosis, and treatment for adults with disabilities.

About 15% of the global population-more than 1 billion people-have a disability. People with early-onset disability are now living into middle and older ages and are therefore at risk for adult cancer. Overall, disabled people are more disadvantaged in social determinants of health and are more likely to have risk factors associated with cancer than people without disabilities. People with disabilities often experience disparities in breast and cervical cancer screening compared with people who do not have disabilities, and patterns in colorectal cancer screening disparities are inconsistent. The minimal evidence that exists relating to the timeliness of cancer diagnosis, treatment, and outcomes for people with disabilities suggests differential treatment and higher cancer-related mortality than for people without disabilities. Worldwide, disabled people face barriers to obtaining cancer care, including inaccessible medical diagnostic equipment, ineffective communication accommodations, and potentially biased attitudes among clinicians. Ensuring equitable cancer care for people with disabilities will therefore require eliminating not only physical but also attitude-based barriers to their care.

US Physicians' Knowledge About The Americans With Disabilities Act And Accommodation Of Patients With Disability.

More than thirty years since the enactment of the Americans with Disabilities Act (ADA), people with disability continue to experience health care disparities. The ADA mandates that patients with disability receive reasonable accommodations. In our survey of 714 US physicians in outpatient practices, 35.8 percent reported knowing little or nothing about their legal responsibilities under the ADA, 71.2 percent answered incorrectly about who determines reasonable accommodations, 20.5 percent did not correctly identify who pays for these accommodations, and 68.4 felt that they were at risk for ADA lawsuits. Physicians who felt that lack of formal education or training was a moderate or large barrier to caring for patients with disability were more likely to report little or no knowledge of their responsibilities under the law and were more likely to believe that they were at risk for an ADA lawsuit. To achieve equitable care and social justice for patients with disability, considerable improvements are needed to educate physicians and make health care delivery systems more accessible and accommodating.

Incidence of Accommodations for Patients With Significant Vision Limitations in Physicians' Offices in the US.

IMPORTANCE: Despite documented disparities in health care for patients with significant vision impairments and legal mandates that patients with disability receive equitable care, little is known about the extent to which physicians practicing in the US accommodate these patients in outpatient clinical settings. OBJECTIVE: To empirically explore the extent of basic accommodations physicians practicing in the US provide to patients with significant vision limitations in outpatient care. DESIGN, SETTING, AND PARTICIPANTS: In this physician survey study, randomly selected physicians were surveyed throughout the US on their attitudes toward patients with disability. A total of 1400 randomly selected active board-certified physicians representing 7 specialties (family medicine, general internal medicine, rheumatology, neurology, ophthalmology, orthopedic surgery, and obstetrics-gynecology) were surveyed. Data were collected from October 2019 to June 2020. MAIN OUTCOMES AND MEASURES: Reported use of basic accommodations when caring for patients with significant vision limitations (defined here as blind or significant difficulty seeing even with glasses or other corrective lenses). Physicians' accommodation performance was assessed based on whether they always or usually described the clinic space and always or usually provided printed material in large font. Use of Braille materials was reported too rarely to include in analyses. RESULTS: Of the 462 survey participants, 297 of 457 (65.0%) were male. The weighted response rate was 61.0%. Only 48 physicians (9.1%; 95% CI, 6.6-12.3) provided both accommodations (always or usually describing clinic spaces and providing large-font materials), while 267 (60.2%; 95% CI, 55.3-65.0) provided neither of these accommodations. Although 62.8% (95% CI, 57.5-67.8; n = 245) of nonophthalmologists did not provide either accommodation, 29.3% (95% CI, 20.1-40.7; n = 22) of ophthalmologists also did not do so; only 24.0% (95% CI, 15.6-35.0; n = 18) of ophthalmologists provided both accommodations compared with 8.4% (95% CI, 5.4-12.7) of other physicians. CONCLUSIONS AND RELEVANCE: This survey study suggests that less than one-tenth of physicians practicing in the US who care for patients with significant vision limitations usually or always describe clinic spaces or provide large-font materials, and less than one-third of ophthalmologists do so. Actions to address this seem warranted.

Use of Accessible Weight Scales and Examination Tables/Chairs for Patients with Significant Mobility Limitations by Physicians Nationwide.

BACKGROUND: Mobility limitations are the most common disability type among the 61 million Americans with disability. Studies of patients with mobility limitations suggest that inaccessible medical diagnostic equipment poses significant barriers to care. METHODS: The study team surveyed randomly selected US physicians nationwide representing seven specialties about their reported use of accessible weight scales and exam tables/chairs when caring for patients with mobility limitations. A descriptive analysis of responses was performed, and multivariable logistic regression was used to examine associations between accessible equipment and participants' characteristics. RESULTS: The 714 participants (survey response rate = 61.0%) were primarily male, White, and urban, and had practiced for 20 or more years. Among those reporting routinely recording patients' weights (n = 399), only 22.6% (standard error [SE] = 2.2) reported always or usually using accessible weight scales for patients with significant mobility limitations. To determine weights of patients with mobility limitations, 8.1% always, 24.3% usually, and 40.0% sometimes asked patients. Physicians practicing ≥ 20 years were much less likely than other physicians to use accessible weight scales: odds ratio (OR) = 0.51 (95% confidence interval [CI] = 0.26-0.99). Among participants seeing patients with significant mobility limitations (n = 584), only 40.3% (SE = 2.2) always or usually used accessible exam tables or chairs. Specialists were much more likely than primary care physicians to use accessible exam tables/chairs: OR = 1.96 (95% CI = 1.29-2.99). CONCLUSION: More than 30 years after enactment of the Americans with Disabilities Act, most physicians surveyed do not use accessible equipment for routine care of patients with chronic significant mobility limitations.