Strategies to Promote the Inclusion of Young Adults With Developmental Disabilities in Community-Based Health Studies

Abstract

We discuss strategies to promote the inclusion of people with developmental disabilities (DDs) in qualitative community-based research studies. Strategies were applied in three projects conducted between 2012 and 2017 that addressed issues of socioeconomic challenges, discrimination, and exclusion of children and young adults with developmental disabilities (YADD). Strategies included partnership with community organizations; inclusion of YADD, family caregivers (FCs), and service providers in advisory committees (ACs); and strategies to accommodate YADD. As part of our contribution, we discuss issues of invisibility and exclusion of individuals with DDs who have "low" functioning capacities. There is a need to review studies sampling inclusion criteria as they may constitute a barrier for participation. Preference for sampling "high" functioning individuals may reinforce exclusion in research, and replicate broader patterns of socioeconomic exclusion of individuals with disabilities. Our discussion of inclusive research is informed by critical disability studies and the underlying principle "nothing about us without us.

Healthcare Barriers Among Working-Age Persons with Disabilities in Trinidad

“…More contextualized solutions included the improvement of the chronic disease assistance programme and the provision of counselling services and more customer service representatives. Although these findings indicate the need for various improvements in the healthcare system, they point to the importance of including persons with disabilities in healthcare research and collaborating with them to better meet their needs (Banas et al, 2019;Battalova et al, 2020;Clark & Watts, 2021;Vazquez et al, 2018). Consulting with persons with disabilities is essential in the context of disability specific accommodations whereby accommodations suitable for people with one impairment type may hinder people with another type (Iezzoni, 2011) and for humanising care for them (Clark & Watts, 2021).…”

“…This issue is further compounded as 80% of persons with disabilities live in developing countries where healthcare systems are inadequate (United Nations Development Programme, 2018). To achieve health and well-being for all at every stage of life, including among persons with disabilities, participatory research on lived experiences is needed (Banas et al, 2019; Vazquez et al, 2018).…”

“That Felt Like Real Engagement”: Fostering and Maintaining Inclusive Research Collaborations With Individuals With Intellectual Disability

“…Researchers have long recognized the value of including stakeholders from marginalized groups in the research process to address power imbalances, improve quality of life, and reduce disparities (Kidd, Davidson, Frederick, & Kral, 2018). Accordingly, researchers concerned with the well-being of people with intellectual disability are increasingly turning to stakeholder partnerships to address disparities this group experiences in areas such as access to health care (Anderson et al, 2013; Krahn & Fox, 2014; Vazquez, Khanlou, Davidson, & Aidarus, 2018), employment (Butterworth & Migliore, 2015), community and social participation (Verdonschot, de Witte, Reichrath, Buntinx, & Curfs, 2009), and quality of life (Simões & Santos, 2016).…”

Campus Service Use Among Students With Disabilities Who Have Experienced Sexual Violence: A Conceptual Model

“…Some students with disabilities also benefit from support from parents (and other caregivers) in managing medical needs (e.g., scheduling and attending appointments, picking up prescription refills, insurance claims), though not all receive such assistance. These areas are critical for success in adulthood for young people (Vazquez et al, 2019). However, for many students with disabilities, the transition to college comes with a transition to different or more independent management of health and disability-related needs.…”