Infusing disability equity within rehabilitation education and practice: A qualitative study of lived experiences of ableism, allyship, and healthcare partnership.

Background: Addressing issues of diversity, equity, and inclusion (DEI) has become central in implementing inclusive and socially responsible rehabilitation education and clinical practice. Yet, the constructs of disability and d/Deaf identity and culture, as well as ableism and allyship are often overlooked. Or, these concepts are approached using outdated philosophical perspectives that pathologize disability and fail to prioritize the lived experiences, expertise, intersectionality, and self-identified needs of people with disabilities. A Critical Disability Studies (CDS) framework may provide a background for better understanding and responding to these issues through allyship. Purpose: This study employed a CDS framework to understand the lived experiences of ableism and allyship from faculty, staff, and students on University of Washington (UW) campuses who identify as d/Deaf, disabled/with a disability, or as having a chronic health condition. Methods: During 2020-2021, we conducted in-depth, semi-structured interviews and focus groups with 22 diverse undergraduate and graduate students, faculty, and staff with disabilities, one third who also identified as people of color. Encounters were audio-recorded, transcribed verbatim, and coded using constant comparison until themes emerged. Results: Four major themes that emerged from the data are: (1) Ever-present ableism in healthcare, (2) Ableism at the intersections, (3) COVID: Surfacing ableism and expanding access, and (4) Disability allyship and healthcare partnership building. Experiences of ableism and allyship were identified at individual, group/unit, and institutional/systemic levels, though participants reported significantly fewer instances of allyship compared to experiences of ableism. Participants identified intersections between disability and other marginalized identities and juxtaposed the benefits of widespread adoption of many access-increasing practices and technologies due to the COVID-19 pandemic, while also highlighting ways in which the pandemic created new obstacles to inclusion. Conclusions: This analysis provides insights into ways of implementing inclusive practices in rehabilitation education, practice, and beyond. Rehabilitation students, faculty, and staff may not be aware of how ableism affects their disabled peers or underpins their professional education. It is important to cultivate opportunities within professional education and clinical training to explicitly address our collective role in creating inclusive and accessible academic and healthcare experiences for our diverse community post COVID-19. Drawing on a CDS framework, the research team devised the mnemonic TRAC, which includes Training, Recognition and Representation, Attendance and Action, and Calling to account as strategic guidelines for operationalizing such opportunities.

Assistive technology in resource-limited environments: a scoping review.

PURPOSE: It is estimated that only 5-15% of people in low and middle income countries (LMICs) who need assistive technologies (AT) have access to them. This scoping review was conducted to provide a comprehensive picture of the current evidence base on AT within LMICs and other resource limited environments. METHOD: The scoping review involved locating evidence, extracting data, and summarizing characteristics of all included research publications. RESULTS: Of the 252 publications included, over 80% focused on types of AT that address mobility (45.2%) and vision (35.5%) needs, with AT types of spectacles and prosthetics comprising over 50% of all publications. Evidence on AT that addresses hearing, communication, and cognition is the most underrepresented within the existing evidence base. The vast majority of study designs are observational (63%). CONCLUSIONS: Evidence on AT in resource-limited environments is limited in quantity and quality, and not evenly distributed across types of AT. To advance this field, we recommend using appropriate evidence review approaches that allow for heterogeneous study designs, and developing a common language by creating a typology of AT research focus areas. Funders and researchers must commit much greater resources to the AT field to ameliorate the paucity of evidence available. Implications for Rehabilitation An increase in the quality and quantity of research is required in resource limited environments, where 80% of the global population of people with disabilities reside. Improved and increased evidence is needed to identify and understand needs, inform policy and practice, and assess progress made in increasing access to and availability of appropriate AT. Over 80% of the existing research publications on assistive technologies in resource limited environments address mobility and vision. More research is needed on AT that address hearing, communication and cognition. The use of a common language would facilitate the advancement of the global AT research field. Specifically there is a need for researchers to use a common definition of AT (i.e., ISO 9999) and typology of AT research focus areas.

Assistive technology access and service delivery in resource-limited environments: introduction to a special issue of Disability and Rehabilitation: Assistive Technology.

This special issue addresses access to and service delivery of assistive technology (AT) in resource-limited environments (RLEs). Access to AT is complicated not simply by limited funds to purchase AT, but by larger ecosystem weaknesses in RLEs related to legislation and policy, supply, distribution, human resources, consumer demand and accessible design. We present eight diverse articles that address various aspects of the AT ecosystem. These articles represent a wide range of AT, many different countries and different research methods. Our goal is to highlight a topic that has received scant research investigation and limited investment in international development efforts, and offer an insight into how different countries and programs are promoting access to AT. We encourage researchers, funders and non-profit organizations to invest additional effort and resources in this area.

Implementing technology-based embedded assessment in the home and community life of individuals aging with disabilities: a participatory research and development study.

PURPOSE: The goal of the study was to investigate the accuracy, feasibility and acceptability of implementing an embedded assessment system in the homes of individuals aging with disabilities. METHOD: We developed and studied a location tracking system, UbiTrack, which can be used for both indoor and outdoor location sensing. The system was deployed in the homes of five participants with spinal cord injuries, muscular dystrophy, multiple sclerosis and late effects of polio. We collected sensor data throughout the deployment, conducted pre and post interviews and collected weekly diaries to measure ground truth. RESULTS: The system was deployed successfully although there were challenges related to system installation and calibration. System accuracy ranged from 62% to 87% depending upon room configuration and number of wireless access points installed. In general, participants reported that the system was easy to use, did not require significant effort on their part and did not interfere with their daily lives. CONCLUSIONS: Embedded assessment has great potential as a mechanism to gather ongoing information about the health of individuals aging with disabilities; however, there are significant challenges to its implementation in real-world settings with people with disabilities that will need to be resolved before it can be practically implemented. IMPLICATIONS FOR REHABILITATION: Technology-based embedded assessment has the potential to promote health for adults with disabilities and allow for aging in place. It may also reduce the difficulty, cost and intrusiveness of health measurement. Many new commercial and non-commercial products are available to support embedded assessment; however, most products have not been well-tested in real-world environments with individuals aging with disability. Community settings and diverse population of people with disabilities pose significant challenges to the implementation of embedded assessment systems.

Cognitive support technologies for people with TBI: current usage and challenges experienced.

PURPOSE: We investigated the current use of off-the-shelf cognitive support technologies (CSTs) by individuals with traumatic brain injury (TBI), the challenges they and their caregivers face when using these technologies, the functional areas where support is needed, and their current experience in learning new technologies. METHOD: We conducted two focus groups with participants with TBI and their caregivers. Focus group interactions were captured using recordings and a court reporter. Transcripts were analyzed qualitatively. RESULTS: We identified three core themes - consumer and caregiver self-reported needs for support, how support is used on a daily basis and consumer and caregiver attitudes towards the use of support by types of support. We also inferred implications for design of CSTs. CONCLUSIONS: Individuals with TBI use consumer available technologies to support cognition. The design of most of these devices is not targeted to meet the needs of people with TBI, and they can be challenging to use independently, but individuals and their caregivers still benefit from their use by embedding technology as one type of support within a broader support network that includes personal assistance. IMPLICATIONS FOR REHABILITATION: People with traumatic brain injury (TBI) are attempting to use a wide range of consumer available technologies to support cognition, although not always successfully. One important role for rehabilitation providers could be helping people with TBI use these technologies with more accuracy and success. People with TBI note that an important element in adopting new technology is good training in its use. Cognitive support technologies (CSTs) are one part of broader network of supports. People with TBI and their caregivers desire independence but do not want to lose the human element that can be provided by a caregiver. New technologies should be implemented with an understanding of an individual's broader support network. Psychosocial aspects of TBI need to be considered when designing and implementing CSTs. In particular, rehabilitation providers need to address the anxiety that many people with TBI experience, including fear about forgetting and their need for early, repeated reminders so they can prepare for upcoming events.

Using the NIH Toolbox in special populations: considerations for assessment of pediatric, geriatric, culturally diverse, non-English-speaking, and disabled individuals.

BACKGROUND: In order to develop health outcomes measures that are relevant and applicable to the general population, it is essential to consider the needs and requirements of special subgroups, such as the young, elderly, disabled, and people of different ethnic and cultural backgrounds, within that population. METHODS: The NIH Toolbox project convened several working groups to address assessment issues for the following subgroups: pediatric, geriatric, cultural, non-English-speaking, and disabled. Each group reviewed all NIH Toolbox instruments in their entirety. RESULTS: Each working group provided recommendations to the scientific study teams regarding instrument content, presentation, and administration. When feasible and appropriate, instruments and administration procedures have been modified in accordance with these recommendations. CONCLUSION: Health outcome measurement can benefit from expert input regarding assessment considerations for special subgroups.

Realizing the potential of accessible ICTs in developing countries.

PURPOSE: To raise the awareness of policy makers, economic development practitioners, and service providers about the importance of making information and communication technology (ICT) based international economic development in low- and middle-income countries inclusive of people with disabilities and to discuss the role and importance of addressing the complete ICT and assistive technology (AT) ecosystem to ensure sustainable, scalable, and affordable access to ICTs and ICT-based programs. METHOD: This commentary piece draws upon recent literature and practice cases to examine the role of accessible ICTs in international development. RESULTS: Accessible ICTs can enhance economic participation and prevent exclusion from participation in international development programs. Access to and use of accessible technologies are largely determined by the ecosystem in which they exist and can be enhanced or hindered by government policy and legislation and the quality of the service delivery systems and financing mechanisms. CONCLUSIONS: People with disabilities in developing countries face daunting barriers to socioeconomic participation. Accessible ICTs can eliminate or mitigate some of these barriers. However, technology advancements do not solely promote penetration, affordability, or scalability of ICT-based development for persons with disabilities. A comprehensive ecosystem approach can help in developing sustainable mechanisms for access, affordability, and availability.

The development of a clinical outcomes survey research application: Assessment Center.

INTRODUCTION: The National Institutes of Health sponsored Patient-Reported Outcome Measurement Information System (PROMIS) aimed to create item banks and computerized adaptive tests (CATs) across multiple domains for individuals with a range of chronic diseases. PURPOSE: Web-based software was created to enable a researcher to create study-specific Websites that could administer PROMIS CATs and other instruments to research participants or clinical samples. This paper outlines the process used to develop a user-friendly, free, Web-based resource (Assessment Center) for storage, retrieval, organization, sharing, and administration of patient-reported outcomes (PRO) instruments. METHODS: Joint Application Design (JAD) sessions were conducted with representatives from numerous institutions in order to supply a general wish list of features. Use Cases were then written to ensure that end user expectations matched programmer specifications. Program development included daily programmer "scrum" sessions, weekly Usability Acceptability Testing (UAT) and continuous Quality Assurance (QA) activities pre- and post-release. RESULTS: Assessment Center includes features that promote instrument development including item histories, data management, and storage of statistical analysis results. CONCLUSIONS: This case study of software development highlights the collection and incorporation of user input throughout the development process. Potential future applications of Assessment Center in clinical research are discussed.