Using Healthcare Services: Perspectives of Community‐Dwelling Aging Adults With Intellectual Disabilities and Family Members

Abstract

The aging of adults with Intellectual Disability (ID) in the community resulting from deinstitutionalization signals a need for change in healthcare policy and services. This population is growing older at rates similar to the rest of the population, and individuals with ID often have multiple chronic illnesses and may experience young‐onset dementia, increasing their need to use healthcare services. However, it is widely recognized that currently healthcare services are ill‐prepared to meet the unique needs of this population as they age in their communities. The purpose of this study was to explore this issue from the perspectives of aging individuals with ID and family members (FMs). This study employed qualitative description as the method of inquiry and took place in British Columbia, Canada. Adults with ID age 40 years and older (N = 21) and FMs (N = 26) participated. Data were collected through focus groups and semistructured interviews. Thematic data analysis was conducted to generate the main study findings. Two overarching themes were identified. First, “the organization and culture of healthcare services in the community.” This theme included issues such as age restrictions on health services, navigating health services, the culture of appointment‐making, and implications of living in rural settings, all of which influenced how individuals used healthcare services. Second, “interactions with healthcare providers” illustrated ways in which providers contribute to healthcare experiences. Many factors, both organizational and interpersonal, shape the experiences of aging individuals with ID using healthcare services in their communities. There continues to be a policy and service gap that can create unnecessary and avoidable difficulties in using healthcare services. Policies, service delivery, and education of healthcare providers need to be revisited in light of the unique needs of this population aging in the community in order to ensure healthcare is accessible.

A Study on Supply–Demand Satisfaction of Community-Based Senior Care Combined with the Psychological Perception of the Elderly

“…Moreover, community as a platform for the effective implementation of medical and elderly care integration still needs improvement for the operability and safety of health care services [27]. Some phenomena exist, such as a lack of professional services provided by relevant personnel [28]. There is still room for improvement in the field of funding [29], cultural services [30], social participation [31], a good external supporting environment [32], and policy implementation [33] for communitybased senior care [34].…”

Sustainable Community Health

“…These affordances are significant to the social and economic wellbeing of the community of people with IDD. While significant progress has been made in inclusive living with IDD, many communities lack in health inclusivity for people with IDD and health disparities remain for this population (Baumbusch, Moody, Hole, Jokinen, & Stainton, 2019;Spassiani et al, 2016). However, increasingly, state and federal agencies are implementing initiatives to reduce these disparities, promoting equity for all their citizens (Spassiani et al, 2016;WHO, 2020).…”

“…Despite progress in many areas, there are still disparities for people with IDD across life domains, and many interventions that have been implemented have lacked sustainability (Kilroy et al, 2015;Larson et al, 2012;McCausland et al, 2016). In some cases, the lack of sustainability has led to re-institutionalization (Baumbusch et al, 2019). Re-institutionalization, which is also known as long-term care, suggests that people with IDD are not valued members of society and that they do not have a real choice in most areas of their lives (Spassiani et al, 2016).…”

“…Stigma against people with IDD is an ever-present issue in their access of community health services (Friedman, 2018). As an example, caregivers reported feeling that the doctors they interacted with did not understand IDD and how to interact with people with IDD (Baumbusch et al, 2019). Moreover, people with IDD reported feeling that in interactions with healthcare providers, the convenience of the providers typically took precedence over their needs as patients (Baumbusch et al, 2019).…”

“…As an example, caregivers reported feeling that the doctors they interacted with did not understand IDD and how to interact with people with IDD (Baumbusch et al, 2019). Moreover, people with IDD reported feeling that in interactions with healthcare providers, the convenience of the providers typically took precedence over their needs as patients (Baumbusch et al, 2019). These reports are concerning as barriers to accessing healthcare and poor health outcomes for people with IDD who are living in integrated community settings is cited as a major reason for reinstitutionalization in this population (Baumbusch et al, 2019).…”