The Role of Information and Knowledge in COVID-19 Vaccination Among People With Intellectual and Developmental Disabilities and Their Families.

People with intellectual and developmental disabilities (IDD) may be at an increased risk of severe illness and death from COVID-19. This article examines the role of information and knowledge in COVID-19 vaccine uptake for people with IDD and their families. We developed a survey about COVID-19 vaccine uptake, confidence, and knowledge for people with IDD and their families. COVID-19 vaccine uptake was associated with higher self-reported knowledge about the vaccine, learning about the vaccine from one's doctor, and social media use. Qualitative results reflected the importance of trusted relationships with medical providers in vaccination.

Advocacy: The seventh foundational principle and core competency of rehabilitation psychology.

PURPOSE/OBJECTIVE: Advocacy has received increasing attention in the field of psychology over the past few years, including in the subfield of rehabilitation psychology. Psychology has been criticized for over-focusing on individual responses to complex sociopolitical problems. Rehabilitation psychology has tended to do this in much the same way, by placing the onus on individual disabled persons' responses to disability and overlooking the systemic and structural concerns of the environment. Advocacy has a long and important history as a competency for the practice of Rehabilitation Psychology. Yet, rehabilitation psychologists rarely receive formal training or guidance about performing effective advocacy efforts. The original six Foundational Principles include the person-environment relation, the insider-outsider distinction, adjustment to disability, psychological assets, self-perception of bodily states, and human dignity. Beatrice Wright advised that the guiding principles must be subject to review and open to expansion. RESEARCH METHOD/DESIGN: N/A. RESULTS: N/A. CONCLUSIONS/IMPLICATIONS: These authors believe that advocacy should be officially adopted as the seventh foundational principle of Rehabilitation Psychology. Rather than define advocacy narrowly as efforts within individual patient or family contexts, we argue that advocacy should be a broad construct of work done alongside the disability community and follow the lead of those with lived experience to avoid unintended consequences of well-intentioned advocacy efforts. We share models of advocacy in the field of psychology, including those most pertinent to rehabilitation psychology. Current disability advocacy priorities are highlighted at the individual, institutional, and discipline levels including interfacing with policymakers. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Rethinking systemic ableism: A response to Zagouras, Ellick, and Aulisio.

Introduction: This article is a response to Zagouras, Ellick, and Aulisio who presented a case study justifying the questioning of the capacity and autonomy of a young woman with a physical disability who was pregnant and facing coercive pressure to terminate. Case description: Julia is described as a 26-year-old woman with a neurological disability that requires her to receive assistance with activities of daily living. She was described as living with her parents who provided her with personal care assistance. Julia became pregnant and her parents wished her to terminate because they did not want to care for her child in addition to her. In fact, Julia's parents threatened her with institutionalization if she did not elect to terminate the pregnancy. Her health care team questioned her decision-making capacity based on her alleged "mental age" and experiences of being sheltered and excluded. The health care team used directive tactics to convince Julia to terminate the pregnancy, which describe as both an ethical and feminist intervention. Discussion: The current authors take issue with the case analysis provided by and argue that they neglected to account for numerous instances of systemic ableism that adversely affected Julia, demonstrated prejudicial and judgmental attitudes toward pregnancy and disability, inappropriately questioned her decision-making capacity by infantilizing her, misconstrued the feminist concept of relational autonomy, and colluded with coercive interference from family members. This is a classic example of discriminatory and culturally incompetent reproductive health care for a disabled woman.

Recommendations to improve the patient experience and avoid bias when prenatal screening/testing.

While prenatal screening and testing have expanded substantially over the past decade and provide access to more genetic information, expectant parents are more likely to describe the diagnosis experience as negative than positive. In addition, the conversations that take place during these experiences sometimes reflect unconscious bias against people with disabilities. Consequently, an interdisciplinary committee of experts, including people with disabilities, family members, disability organization leaders, healthcare and genetics professionals, and bioethicists, reviewed selected published and gray literature comparing the current state of the administration of prenatal testing to the ideal state. Subsequently, the interdisciplinary team created recommendations for clinicians, public health agencies, medical organizations, federal agencies, and other stakeholders involved with administering prenatal screening and testing to create better patient experiences; conduct training for healthcare professionals; create, enforce, and fund policies and guidelines; and engage in more robust data collection and research efforts.

The evolution of disability language: Choosing terms to describe disability.

The use of disability language in academic scholarship has changed significantly over the past several years. Although it would be helpful to have concrete guidelines and rules that could generalize across situations regarding disability terminology, language itself is a phenomenon that evolves and varies over time in response to cultural shifts. People with disabilities have varied preferences about the language they use to describe themselves and what language they prefer to be used to describe them. At the same time, disability researchers, including the current authors, are often given prescriptive guidance by journal editors about the specific disability language they should use (i.e., person-first language). Thus, the tension between approaches to disability language underscores a need for open dialogue about a culturally informed choice of disability language in scholarly publications. Accordingly, this commentary discusses the history and evolution of disability language, explores current trends, and recommends language for academic articles.

Ever-changing but always constant: "Waves" of disability discrimination during the COVID-19 pandemic in the United States.

The ongoing novel coronavirus 2019 (COVID-19) pandemic has had considerable effects on the disability community. As the pandemic has progressed and changed, the manifestations of these effects have differed, and yet the underlying causes-ableism including the devaluation of disabled lives-have remained consistent. In this commentary, we explore the impact of the pandemic on the disability community in the United States, conceptualizing four distinct but overlapping "waves" of discrimination: 1) healthcare rationing and missed opportunities for disability inclusion, 2) access to resources, supplies, and accommodations; 3) vaccine access; and 4) long COVID and disability identity. Throughout our discussion of these waves, we detail the discrimination faced by people with disabilities, the underlying ableism that perpetuates it, and the resilience shown by the disability community. We end with a call for combating systemic ableism in healthcare and public health systems.

Perceived stress of individuals with disabilities in the United States during COVID-19.

PURPOSE/OBJECTIVE: This study was conducted to better understand how COVID-19 has impacted the stress, resiliency, and quality of life of people with disabilities near the height of the first surge of the COVID-19 pandemic in the summer of 2020. RESEARCH METHOD/DESIGN: An online survey of 990 individuals who self-identified as having at least one disability in the United States was conducted. RESULTS: Quality of life, coping/resilience skills, number of identified disabilities, and age were all significantly related to perceived stress. While access to technology was not significantly related to perceived stress, increased use of technology since the pandemic was associated with increased reported stress, though the practical significance was small. CONCLUSIONS/IMPLICATIONS: There is a need for increased attention to dissemination of information to people with disabilities. Knowledge of medical rights was significantly associated with following social distancing practices and suggests that health knowledge does change behavior. Ensuring that people with disabilities are aware of coping skills and how to promote resilience is a needed area of focus for the field. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

COVID-19 vaccine website accessibility dashboard.

BACKGROUND: The COVID-19 pandemic has exacerbated historical inequities for people with disabilities including barriers in accessing online information and healthcare appointment websites. These barriers were brought to the foreground during the vaccine rollout and registration process. OBJECTIVE: This cross-sectional study aimed to examine accessibility of U.S. state and territory COVID-19 information and registration centralized websites. METHODS: The Johns Hopkins Disability Health Research Center created a COVID-19 Vaccine Dashboard compiling COVID-19 information and vaccine registration web pages from 56 states and territories in the United States (U.S.) reviewed between March 30 through April 5, 2021 and analyzed accessibility using WAVE Web Accessibility Evaluation Tool (WAVE). WAVE identifies website accessibility barriers, including insufficient contrast, alternative text, unlabeled buttons, total number of errors, and error density. Web pages were ranked and grouped into three groups by number of errors, creating comparisons between states on accessibility barriers for people with disabilities. RESULTS: All 56 U.S states and territories had COVID-19 information web pages and 29 states had centralized state vaccine registration web pages. Total errors, error density, and alert data were utilized to generate accessibility scores for each web page, the median score was 259 (range = 14 to 536 and IQR = 237) for information pages, and 146 (range = 10 to 281 and IQR = 105) for registration pages. CONCLUSIONS: These results highlight barriers people with disabilities may encounter when accessing information and registering for the COVID-19 vaccine, which underscore inequities in the pandemic response for the disability community and elevate the need to prioritize accessibility of public health information.

Evaluation of a Pilot Healthy Eating and Exercise Program for Young Adults with Autism Spectrum Disorder and Intellectual Disabilities.

OBJECTIVES: The aims of this pilot study were to examine program structure, implementation, and outcomes of a healthy eating and exercise program for young adults with Autism Spectrum Disorder (ASD) and intellectual disabilities (IDs). METHODS: Seventeen young adults with ASD and IDs, six parents, and 10 staff participated. Programming was delivered for over a year and featured healthy eating and exercise lessons. Also, group-based motivational interviewing was used to develop weekly health goals for participants. During COVID-19, lessons were delivered online. The program was modified using lectures with visual material, when participants returned to classrooms. Lessons focused on MyPlate, portion sizes, the food pyramid, vitamins and minerals in foods, and learning to eat "less" of unhealthy food groups. Exercise lessons featured information about importance of exercise, introduction to different types of exercise, and knowledge about how exercise benefits the body. Staff completed implementation logs. Height and weight of participants were examined at regular intervals. Parents completed surveys and participants completed group interviews to assess program impact. RESULTS: Two participants lost a significant amount of weight and others maintained their weight during COVID-19. Participants and parents were satisfied with the program and reported knowledge and behavior change. CONCLUSIONS: Results indicated participating in the intervention resulted in improved knowledge and health behaviors. Findings are preliminary, and research using control groups and assessing change in weight and behaviors over time are needed. Observation of meals and physical activity levels will provide more objective data in future studies.

Experiences of Breastfeeding among Disabled Women.

BACKGROUND: Although breastfeeding has been extensively studied, there remains a paucity of data about the breastfeeding experiences of disabled women. Despite indications of similar pregnancy rates, disabled women seem to breastfeed at lower rates. Emerging research on the intersection of breastfeeding and disability has begun to shed light on how aspects of disability may impact breastfeeding. METHODS: This digital and participatory action research study used semistructured video or telephone interviews to evaluate the experiences of breastfeeding among 24 disabled women through descriptive content analysis. The cross-disability sample was composed of women with self-identified intellectual, developmental, physical, sensory, and psychiatric disabilities. Some women had multiple disabilities. RESULTS: Qualitative analysis revealed four themes relating to breastfeeding among disabled women: 1) communication difficulties with lactation consultants, 2) milk supply and latch problems, 3) intense pressure to breastfeed, and 4) positive interactions with health care providers. CONCLUSIONS: This study provides new information about the breastfeeding experiences of women with disabilities. Our findings suggest that disabled women should be better supported in their breastfeeding decisions and require greater access to disability-affirmative and informative clinical resources and accessible communication.

No body is expendable: Medical rationing and disability justice during the COVID-19 pandemic.

The health threat posed by the novel coronavirus that caused the COVID-19 pandemic has particular implications for people with disabilities, including vulnerability to exposure and complications, and concerns about the role of ableism in access to treatment and medical rationing decisions. Shortages of necessary medical equipment to treat COVID-19 have prompted triage guidelines outlining the ways in which lifesaving equipment, such as mechanical ventilators and intensive care unit beds, may need to be rationed among affected individuals. In this article, we explore the realities of medical rationing, and various approaches to triage and prioritization. We discuss the psychology of ableism, perceptions about quality of life, social determinants of health, and how attitudes toward disability can affect rationing decisions and access to care. In addition to the grassroots advocacy and activism undertaken by the disability community, psychology is rich in its contributions to the role of attitudes, prejudice, and discriminatory behavior on the social fabric of society. We call on psychologists to advocate for social justice in pandemic preparedness, promote disability justice in health care settings, call for transparency and accountability in rationing approaches, and support policy changes for macro- and microallocation strategies to proactively reduce the need for rationing. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

A standard set of outcome measures for the comprehensive assessment of osteogenesis imperfecta.

BACKGROUND: Osteogenesis Imperfecta (OI) is a genetic disorder also known as 'brittle bone disease'. The clinical manifestation of OI shows a wide variation. Therefore, care for patients with OI requires an interdisciplinary approach. The effectiveness of particular interventions and treatment protocols of interdisciplinary teams is not clear due to a non-standardized and wide variation of patient outcomes thus making the comparison of outcome measures available in the literature difficult. It is only by agreeing on a common, standard set of outcome measures for the comprehensive appraisal of OI that comparisons across interdisciplinary treatment centers for OI will be possible in the future. METHODS: The Key4OI international interdisciplinary working group of 27 members used a consensus-driven modified Delphi approach to develop a set of global outcome measures for patients with OI. The International Classification of Functioning, Disability and Health (ICF), was used to define domains and organize the outcomes from the literature search. After reviewing the outcomes extracted from the literature, trials and registries, the working group agreed on a final selection of domains and their definition (ICF definition as well as a lay description). These domains were then presented to the focus groups who prioritized the outcome domains by taking into account the items important to the OI community. All content was collected and analyzed and final domains were determined. A consensus of appropriate measuring instruments for each domain was reached with Delphi rounds. The entire approach was in line with the International Consortium for Health Outcomes Measurement ICHOM methodology. RESULTS: More than 400 different outcome measures were identified in our literature search. After three Delphi rounds, 24 domains were selected. After the focus group sessions, the number of domains were reduced to 15. A consensus was reached on the measuring instruments to cover these domains for both children and adults. CONCLUSION: The Key4OI project resulted in standard set of outcome measures focused on the needs and wishes of individuals with OI and their families. This outcome set will enable healthcare teams and systems to compare and to improve their care pathways and quality of care worldwide. Further studies are needed to evaluate the implementation of this standardized outcome set.

Raising awareness of disabled lives and health care rationing during the COVID-19 pandemic.

Discriminatory and ableist health care rationing policies have raised serious concern in the disability community during the novel coronavirus pandemic. These concerns reflect the long-standing devaluation of disabled lives and place considerable weight on the disability community during this already stressful time. Nondisabled psychologists should work to advocate for the rights of people with disabilities by amplifying the voices and concerns of disabled activists so that history does not repeat itself. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Fostering disability advocates: A framework for training future leaders through interprofessional education.

This article describes the curriculum of an interprofessional training program tasked with teaching policy and advocacy knowledge and skills specific to the underserved population of individuals with developmental disabilities. The program, guided by the Maternal and Child Health Bureau's Leadership Competencies, emphasizes integrating professionals in health disciplines, including psychology, together with individuals with disabilities and their family members for shared learning experiences. The article discusses the importance of incorporating advocacy training into preparation programs for future psychologists. Strategies are described in the context of Gagné's Nine Events of Instruction and include goal development and mentorship, experiential opportunities, and didactic teaching. Lessons learned and next steps, specifically related to establishing efficient evaluation procedures, are discussed. Psychology graduate education programs and other training programs, especially those that have an interprofessional focus, may benefit from incorporating similar strategies to strengthen their advocacy curriculum and foster students and trainees to become skilled advocates. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Implications of Health Equity for Children With Disabilities.

This Viewpoint discusses how the National Institutes of Health designation of individuals with disabilities as a health disparity population can boost research participation and funding and expand health care access for pediatric patients with disabilities.