Trust, respect, and training: Principles of care for service professionals supporting adults with intellectual disabilities in community residential programs.

Background: Adults with intellectual disabilities in community residential programs receive services from direct support professionals (DSPs) intended to facilitate community engagement. As part of a rate study for Washington State's Developmental Disabilities Administration on community residential services, adults in these programs were asked to provide their perspective on the quality and effectiveness of their care.Method: Twenty-five adults with intellectual disabilities were interviewed focusing on daily activities, staffing, and living situations. Interview transcripts were coded and analyzed for dominant themes.Results: Participants emphasized the desire for trustworthy, caring, and respectful DSPs; DSPs trained in behavioral management techniques made participants feel safe and supported. Nearly all participants called for greater staffing stability.Conclusions: People living in community residential programs are profoundly impacted by the stress and uncertainty of DSPs facing limited resources and high staff turnover. Stable, consistent support makes it easier for participants to engage in community integration.

Interdisciplinary Approach to the Development of Accessible Computer-Administered Measurement Instruments.

Principles of fairness in testing require that all test takers, including people with disabilities, have an equal opportunity to demonstrate their capacity on the construct being measured. Measurement design features and assessment protocols can pose barriers for people with disabilities. Fairness in testing is a fundamental validity issue at all phases in the design, administration, and interpretation of measurement instruments in clinical practice and research. There is limited guidance for instrument developers on how to develop and evaluate the accessibility and usability of measurement instruments. This article describes a 6-stage iterative process for developing accessible computer-administered measurement instruments grounded in the procedures implemented across several major measurement initiatives. A key component of this process is interdisciplinary teams of accessibility experts, content and measurement experts, information technology experts, and people with disabilities working together to ensure that measurement instruments are accessible and usable by a wide range of users. The development of accessible measurement instruments is not only an ethical requirement, it also ensures better science by minimizing measurement bias, missing data, and attrition due to mismatches between the target population and test administration platform and protocols.

Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies.

People with disabilities are largely absent from mainstream health research. Exclusion of people with disabilities may be explicit, attributable to poorly justified exclusion criteria, or implicit, attributable to inaccessible study documents, interventions, or research measures. Meanwhile, people with disabilities experience poorer health, greater incidence of chronic conditions, and higher health care expenditure than people without disabilities. We outline our approach to "accessible research design"-research accessible to and inclusive of people with disabilities. We describe a model that includes 3 tiers: universal design, accommodations, and modifications. Through our work on several large-scale research studies, we provide pragmatic examples of accessible research design. Making efforts to include people with disabilities in public health, epidemiological, and outcomes studies will enhance the interpretability of findings for a significant patient population.

COVID-19 and the Americans with Disabilities Act: Implications for employment and higher education.

BACKGROUND: The Americans with Disabilities Act (ADA) is a federal law that protects individuals with disabilities from discrimination in all areas of public life. The ADA contributes to equal opportunity across policy areas, including the interconnected domains of higher education and employment. Since the onset of the COVID-19 pandemic in 2020, emerging research has begun to document the disparities in impact on people with disabilities, among other marginalized groups. However, no research to date has reviewed and synthesized literature that addresses disability discrimination related to COVID-19 that has implications for application of the ADA. OBJECTIVE: This rapid evidence review aims to increase understanding about how COVID-19 has resulted in challenges for people with disabilities in the domains of employment and higher education that may be resolved through application of the ADA. METHODS: Keyword searches were conducted in five electronic databases. Title, abstract, and full text screening was conducted followed by a thematic analysis of key ADA themes. RESULTS: Twelve final articles were included in this review, eight categorized within higher education and four within employment. In relation to the ADA and COVID-19, five studies revealed findings related to web accessibility, eight related to effective communication, and four related to reasonable accommodations. CONCLUSION: The findings provide a broad overview of the current research on how COVID-19 has affected accessibility, communications and accommodations in employment and higher education and identify gaps in the literature within these policy domains.

Conducting systematic evidence reviews: core concepts and lessons learned.

A systematic review (SR) is an essential component of evidence-based practice, because it synthesizes information on a particular topic that is necessary to inform health-related decision making. The purpose of this article is to document the process of producing a high-quality SR within the field of rehabilitation in contrast to other fields (eg, pharmaceutic research). We describe the notable methodologic challenges to producing high-quality SRs for rehabilitation researchers. Broadly, we outline how the quality of SRs is evaluated and suggest mechanisms for researchers to address potential pitfalls. Because meaningful SRs can and should be conducted in this field, we provide practical guidance regarding how to conduct such an SR. We outline a series of 8 important steps in the production of an SR: forming a committee, creating a development plan, conducting a literature review, selecting articles for inclusion, extracting data, preparing tables of evidence, facilitating external review and publication, and forming conclusions and recommendations. For each step of the SR process, we provide detailed description about the methodologic decisions involved and recommended strategies that researchers can implement to produce a high-quality SR. Using these preestablished steps and procedures as a guideline will not only help to increase the efficiency of the SR process, but also to improve the quality. The availability of high-quality SRs with plain language summaries promotes access to the best quality information for all involved in decision making.

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.

Accessibility Considerations in the National Children's Study.

In the National Children's Study (NCS), assessments were proposed and developed that used a wide range of modes of administration (e.g., direct in-person interviews, telephone interviews, computer assisted interviews, self-administered questionnaires, real time and recall observations, and physical examinations). These modes of administration may pose accessibility challenges for some people with disabilities. Accessibility of measurement is important to consider because systematic exclusion of people with disabilities from research can lead to measurement bias and systematic error in derived scores. We describe our approach to analyzing the accessibility of measures in the NCS and describe the work of the Accessibility Domain Team. Finally, we describe a decision process for creating and using accessible health research measures.

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.

Information needs of people with spinal cord injuries.

BACKGROUND/OBJECTIVE: To determine the information needs, level of Internet access, and current and preferred formats and sources of information of adults with spinal cord injuries (SCIs). Individuals with SCIs have a high lifetime risk for medical complications and other health conditions secondary to their injury. Many secondary conditions can be prevented or mitigated through appropriate self-care and/or self-management. People with SCIs need timely, high-quality information about health and medical issues after discharge and throughout their lifetime to improve self-care and maximize quality of life. METHODS: A survey was administered as part of the third time point of a longitudinal research study on individuals with SCI. RESULTS: A total of 80.2% of the 277 respondents reported having Internet access. The most frequently selected format used currently and preferred by respondents for receiving SCI information was "Web pages/Internet". The top-ranked current and preferred source of SCI information was from a "Physician: SCI Expert/Rehabilitation Specialist". Respondents reported needing information on medical issues the most. Significantly higher percentages of individuals identified as "white" and with higher education levels had access to the Internet and ranked the selection of Web pages/Internet as their top choice. CONCLUSIONS: Results confirm that, although people with SCI prefer to receive SCI information from SCI experts, the Internet is a more accessible and more currently used source. Educational level and race predicted current and preferred use of the Internet for obtaining SCI information, suggesting that Internet distribution of SCI information will exclude subgroups.

Perspectives on a mobile application that maps assistive technology resources in Africa.

BACKGROUND: Access to assistive technology (AT) is poor in African countries because of a lack of knowledge, resources, services and products. A mobile application (app), the AT-Info-Map, was developed to map AT availability in southern Africa. OBJECTIVES: This article aimed to describe users' and suppliers' perceptions of the AT-Info-Map app. METHOD: Qualitative data were collected in Zambia, Botswana, Malawi and Lesotho, through nine focus group discussions with 72 participants. Participants included AT users, AT suppliers and representatives of disability organisations. Data were thematically analysed. RESULTS: Two broad themes, that is, usefulness of the AT-Info-Map application and technical issues and content, emerged from the data analysis. Subthemes under usefulness focused on the importance of using current technology, convenience of the app, the need for accuracy, responsiveness of supplier to user's needs, influence on AT market and how the app creates an opportunity for networking. Challenges to download and navigate the app, the need for training in its use, exclusion of those not literate in English and those with visual impairments were subthemes under technical issues and content. CONCLUSION: The app was perceived as an important step to increase access to AT for persons with disabilities in less resourced settings. The challenges that emerged from the data analysis have led to the development of a web-based system that will complement or replace the app and improve AT information provision. However, the information provided by the app and website is still only a partial solution to improve AT access in Southern Africa.

Lessons from the pilot of a mobile application to map assistive technology suppliers in Africa.

A pilot project to develop and implement a mobile smartphone application (App) that tracks and maps assistive technology (AT) availability in southern Africa was launched in Botswana in 2016. The App was developed and tested through an iterative process. The concept of the App (AT-Info-Map) was well received by most stakeholders within the pilot country, and broader networks. Several technical and logistical obstacles were encountered. These included high data costs; difficulty in accessing AT information from the public healthcare sector, the largest supplier of AT; and the high human resource demand of collecting and keeping up-to-date device-level information within a complex and fragmented supply sector that spans private, public and civil society entities. The challenges were dealt with by keeping the data burden low and eliminating product-level tracking. The App design was expanded to include disability services, contextually specific AT categories and make navigation more intuitive. Long-term sustainability strategies like generating funding through advertisements on the App or supplier usage fees must be explored. Outreach and sensitisation programmes about both the App and AT in general must be intensified. The project team must continually strengthen partnerships with private and public stakeholders to ensure ongoing project engagement. The lessons learnt might be of value to others who wish to embark on initiatives in AT and/or implement Apps in health or disability in southern Africa and in low-resourced settings around the world.

Impact of the design of U.S. history textbooks on content acquisition and academic engagement of special education students: an experimental investigation.

We used randomized controlled trials to compare the impact of the designs of 2 United States history textbooks on the content acquisition and behavior of 8th-grade students identified for special education services or identified as low achieving. We also investigated whether teachers differed in their use of instructional activities and questioning strategies based on the type of text used. Our findings suggest that students learned more history content, were more actively engaged, and answered more questions correctly when using the experimental textbook. Teachers used different activities depending on which textbook they used, but did not differ in types of questions asked.

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.

Test accommodations for individuals with neurological conditions completing the NIH Toolbox-Cognition Battery: An evaluation of frequency and appropriateness.

OBJECTIVES: First, to evaluate the frequency with which individuals with neurological conditions require test administration accommodations for the NIH Toolbox-Cognition Battery (NIHTB-CB). Second, to evaluate the appropriateness of accommodations provided by administrators, including adherence to NIHTB-CB Reasonable Accommodations Guidelines. METHOD: Adults with traumatic brain injury, spinal cord injury, or stroke (n = 604) completed the NIHTB-CB and other assessments as part of a multisite study. We provide a descriptive, secondary analysis of test administrator notes to determine use and appropriateness of accommodations. RESULTS: Of the 604 participants, 450 (75%) completed the NIHTB-CB using standard administration procedures, but 137 (22.6%) encountered accessibility challenges that required accommodations. Participants with motor function impairments were most likely to receive at least 1 of 3 kinds of accommodations: (a) use of nonstandard methods of entering responses using standard input devices, (b) use of alternate input devices, or (c) help from the test administrator to enter a response. Fatigue and/or impulsivity led to nonstandard administration by 48 (7.9%) individuals. Post hoc audit of test administrator notes revealed that despite careful instructions and supervision, 49 (56.3%) of the accommodated administrations breached standardization and scores could not be interpreted using test norms. CONCLUSION: Although the NIHTB-CB was developed for individuals without neurological impairment, most individuals with neurological conditions completed the standardized administration without accommodations. When accommodations were needed, administrators did not adhere to the official Reasonable Accommodations Guidelines in more than half of the cases. (PsycINFO Database Record

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.

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.

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.

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.

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.

Indoor wayfinding: developing a functional interface for individuals with cognitive impairments.

PURPOSE: Assistive technology for wayfinding will significantly improve the quality of life for many individuals with cognitive impairments. The user interface of such a system is as crucial as the underlying implementation and localisation technology. We studied the user interface of an indoor navigation system for individuals with cognitive impairments. METHOD: We built a system using the Wizard-of-Oz technique that let us experiment with many guidance strategies and interface modalities. Through user studies, we evaluated various configurations of the user interface for accuracy of route completion, time to completion, and user preferences. We used a counter-balanced design that included different modalities (images, audio, and text) and different routes. RESULTS: We found that although users were able to use all types of modalities to find their way indoors, they varied significantly in their preferred modalities. We also found that timing of directions requires careful attention, as does providing users with confirmation messages at appropriate times. CONCLUSIONS: Our findings suggest that the ability to adapt indoor wayfinding devices for specific users' preferences and needs will be particularly important.