Inclusion in Disability Evaluation and Surveillance Projects: Reflections and Recommendations For Inclusive Project Teams

Disability rights advocates emphasize “Nothing about us without us,” yet a program evaluation or surveillance team’s composition rarely reflects inclusion of the individuals from the disability populations they focus on. Individuals who have lived experience with disabilities should be present during all steps of program evaluation and surveillance projects in meaningful ways to progress the impact of disabilities work. In this paper, we describe a process used by staff at Alaska’s University Centers for Excellence in Developmental Disabilities (UCEDD) to hire, train, and work with individuals with intellectual, development disabilities (IDD) as team members. The case example for the inclusion effort was the National Core Indicators (NCI) In-Person Survey (IPS). Recruitment started in December 2020 with Zoom interviews for the NCI IPS occurring from March through August 2021. The project team included ten staff members, one of whom also was an individual who experiences an IDD (partner interviewer). Team members completed web based and Zoom training sessions. Throughout the training and onboarding process, project leads sought to modify the training and project implementation to better suit the expressed needs of all team members. To support the partner interviewer with IDD, two team members with research and program evaluation experience served as “lead” interviewers. Project leads also created a simplified version of the NCI IPS instrument for data collection. Multiple training sessions were held to acclimate the lead and partner interviewer with the team interview process and modified data collection instrument. Recommendations for improving our UCEDD program evaluation and surveillance inclusive practices were noted: Involve individuals with disabilities in every part of project planning processes; allow team members agency in selecting their projects and room for flexibility if research plans don’t work out; establish open communication and safe spaces for all team members; provide comprehensive, accessible, and equitable training; give team members a sense of timelines and trajectories of research projects with regular check-ins; adjust practices for an increasingly online work environment with COVID-19; develop accessible training, data collection and data entry systems; and invest in all team members long-term

Disability Decolonized: Indigenous Peoples Enacting Self-determination

Populations researched often have little if any input in the means of data collection, analysis, or authorship of the findings published. They are excluded from participating in the scientific methods even though they are the subject of the content that is being produced. This is true for Indigenous populations and the disability community around the globe. Researchers usually use colonial methodology that does not encompass the values of these communities or have their well-being in mind. This paper examines the history of colonization and how it has infiltrated science and inhibits self-determination of Indigenous peoples. Indigenous communities need to have the means and power for self-determination. For individuals with disabilities, this includes rights to services and programs that give the respect and person-centered care they deserve to make informed decisions about their lives. Moreover, there is a recognized need for culturally appropriate services that empower American Indian and Alaska Native (AI/AN) people with disabilities to lead independent lives in their own communities—urban or rural. AI/AN cultures may view disabilities differently than those in the mainstream U.S. Barriers and challenges for AI/AN individuals with intellectual and developmental disabilities (IDD) and AI/AN families of individuals with IDD in access to services include inadequate funding, personnel shortages, housing shortages, lack of coordination among agencies, lack of consultation with tribes, and problems identifying persons eligible for services. AI/AN-specific programs that have begun to bridge the gap in access to and development of culturally competent services such as Oyáte Circle and development of collegiate courses focused on AI/AN disabilities issues. There remains a need for partnership with AI/AN tribes for disability services and incorporation of AI/AN people with disabilities as equitable partners in program development and implementation. To reach a full decolonization of IDD health care and fully embrace diversity, equity, and inclusion (DEI) principles, individuals in these communities need to be viewed as experts in their journey of resilience

Use of the Extension for Community Health Outcomes (ECHO) model for public health emergency response in Alaska

ABSTRACTProject ECHO (Extension for Community Healthcare Outcomes) is a telehealth and virtual mentoring model. It is a scalable platform to create peer communities where professionals can gain knowledge, skills, and relevant information to their work and clinical practice. Key informant interviews of Alaska public health leaders, clinical providers, ECHO staff, and local government representatives were conducted to evaluate the effectiveness and utility of the Project ECHO for COVID-19 response. Project ECHO session attendance and evaluation data were also reviewed. A combined total of 41,255 attendees participated in a COVID-19 response ECHO July 1, 2019 – June 30, 2022. Eight key informant interviews were conducted with individuals involved in leading or coordinating COVID-19 response efforts. Key informants identified four themes impacting the effectiveness of the Project ECHO model in responding to the COVID-19 pandemic: (1) Engagement, (2) Amplification, (3) Adaptability, and (4) Trust. In a rapidly changing pandemic, the ECHO model provided adaptive and effective virtual spaces where Alaskan providers, communities, elected officials, educators, and other stakeholders were able to receive tailored and up-to-date information on mitigation, treatment, and other concerns exacerbated by COVID-19