"There is No Communication": A Qualitative Examination of Deaf Signers' Experiences With Advance Care Planning.

Objective(s): Deaf American Sign Language (ASL) users are subject to health care disparities resulting from communication and language barriers. Currently, few resources on advance care planning and end-of-life care exist in ASL. This study explores Deaf ASL users' perceptions and experiences with end-of-life care and advance care planning. Methods: Semi-structured 1:1 interviews with Deaf signers were translated, and transcribed into English by a bilingual researcher. Investigators inductively coded transcripts and identified themes of barriers, facilitators, knowledge, and sources of information regarding end-of-life care. Participants' knowledge of advance care planning and completion of advance care planning documents were evaluated using a brief assessment. Results: Eleven Deaf ASL users participated in the study with two deaf interviewers. Participants reported barriers to end-of-life care including poor provider communication, inaccessible sources, and inadequate provision of accommodations, leading to patient distrust. Participants' understanding of advance care planning was facilitated by accessible forms of communication and their social networks, such as family, friends, and Deaf peers. Participants primarily gained information on end-of-life care from first-hand familial experience, peers, and media. Participants' mean advance care planning knowledge was 4.6 out of 15 (SD = 2.6). Conclusions: Deaf ASL users face scarce accessible resources around end-of-life care, lowering their ability to understand and proceed with advance care planning. Implementation of ASL accessible advance care planning educational tools in health care settings is needed.

Accessibility and disability inclusion among top-funded U.S. Undergraduate Institutions.

BACKGROUND: There is limited data to assess, track, or quantify accessibility and disability inclusion across universities. OBJECTIVE: This cross-sectional study assessed disability inclusion and accessibility at the top 50 National Institutes of Health (NIH)-funded undergraduate programs in the United States. We hypothesized that there is no association between NIH funding and the University Disability Inclusion Score. METHODS: A novel tool, the University Disability Inclusion Score assessed disability inclusion and accessibility using 10 indicators spanning 4 categories: (1) accessibility of built and virtual environment, (2) public image of disability inclusion, (3) accommodations processes and procedures, and (4) grievance policy. Based upon the total points (out of a total score of 100), each university was assigned a letter grade (A-F). RESULTS: Of the top 50 NIH-funded institutions, 6% received an A grade on the Score, while 60% received D or F. The mean scores were 15.2 (SD = 5) for accessibility of built and virtual environment (20 points), 10 (SD = 3) for public image of disability inclusion (20 points), 30.6 (SD = 10) for accommodations processes and procedures (50 points), and 8.1 (SD = 3) for grievance policy (10 points). CONCLUSIONS: Our findings suggest room for improvement in disability inclusion and accessibility among top university recipients of NIH funding. To provide an equitable academic experience, universities must prioritize disability inclusion.

The development of the Supplemental Nutrition Assistance Program enrollment accessibility (SNAP-access) score.

BACKGROUND: The Supplemental Nutrition Assistance Program (SNAP) is a federal public benefit providing food assistance to millions of Americans. However, it is typically administered by states, creating potential variation in accessibility and transparency of information about enrollment for people with disabilities. OBJECTIVE: To develop and demonstrate the use of a method to assess the accessibility and transparency of information about the disability-inclusive process and practices of SNAP enrollment. METHODS: Cross-sectional data was collected from SNAP landing and enrollment webpages from all 50 U.S. states, the District of Columbia, and New York City from June-August 2021. Based on principles of universal design and accessibility, scores were determined for each SNAP program across three areas: flexibility in the enrollment process (6 points), efficiency of finding information about enrollment on SNAP websites (6 points), and the accessibility of SNAP webpages (6 points). Total scores were the sum of these sub-categories (18 points maximum). RESULTS: Of the 52 SNAP programs assessed, mean scores were 10.66 (SD = 2.51) for the total score, 2.67 (SD = 0.91) for flexibility in the enrollment process, 3.32 (SD = 1.19) for efficiency of finding information about enrollment on SNAP websites, and 4.67 (SD = 1.72) for the accessibility of SNAP webpages. No programs received the maximum flexibility score (6 points) on flexibility, 2 programs received the maximum on efficiency, and 31 programs the maximum on accessibility. CONCLUSIONS: We found differences in the accessibility, flexibility, and efficiency of SNAP program enrollment information available on SNAP websites and outline room for improvement across all three of these areas.

New obstacles and widening gaps: A qualitative study of the effects of the COVID-19 pandemic on U.S. adults with disabilities.

BACKGROUND: Prior research has demonstrated that the needs of the disability community have not been met during public health emergencies. The COVID-19 pandemic has exacerbated existing inequities for many populations including people with disabilities, and data is needed to develop inclusive public health response policies. OBJECTIVE: To identify how COVID-19 has uniquely impacted the lives of adults with disabilities. METHODS: 38 participants were recruited through disability advocacy groups and social media. Semi-structured virtual focus groups were conducted with adults (≥18 years) who self-identified as having a disability. Focus groups were conducted for each of six disability sub-groups: vision, hearing, mobility and physical, mental health, cognitive, intellectual, and developmental, and chronic illness. Using inductive coding, major themes were identified and compared across the disability sub-groups. RESULTS: Three major themes and thirteen sub-themes were identified from the focus groups. The three major themes comprised: new problems created by the pandemic, obstacles in daily life that were exacerbated by the pandemic, and broader changes to accessibility and disability identity. Sub-themes such as difficulty with COVID-19 testing and regular medical care were reported by participants of all disability sub-groups, while other sub-themes like direct care needs and medical rationing were reported by participants from a subset of the disability sub-groups. CONCLUSIONS: These results indicate how the COVID-19 pandemic unequally impacts disabled people. The participants indicated that to fully address their needs, disability perspectives must be included in the public health pandemic response. As new research shows that COVID-19 can cause long-term disability, the urgency to ensure the disability community is part of public health policies will increase.

The Unexamined Diversity: Disability Policies and Practices in US Graduate Medical Education Programs.

BACKGROUND: Graduate medical education (GME) institutions must ensure equal access for trainees with disabilities through appropriate and reasonable accommodations and policies. To date, no comprehensive review of the availability and inclusiveness of GME policies for residents with disabilities exists. OBJECTIVE: We examined institutions' compliance with Accreditation Council for Graduate Medical Education (ACGME) requirements and alignment with Association of American Medical Colleges (AAMC) policy considerations. METHODS: Between June and August 2019, we conducted a directed content analysis of GME institutional policies using the AAMC report on disability considerations and the ACGME institutional requirements as a framework. RESULTS: Of the 47 GME handbooks available for review, 32 (68%) included a disability policy. Forty-one of the 47 (87%) handbooks maintained a nondiscrimination statement that included disability. Twelve of the 32 (38%) handbooks included a specific disability policy and language that encouraged disclosure, and 17 (53%) included a statement about the confidential documentation used to determine reasonable accommodations. Nineteen of the 32 (59%) maintained a clear procedure for disclosing disabilities and requesting accommodations. CONCLUSIONS: While disability policies are present in many of the largest GME institutions, it is not yet a standardized practice. For institutions maintaining a disability policy, many lack key elements identified as best practices in the AAMC considerations.