Future planning for individuals with intellectual and developmental disabilities: Perspectives of siblings in South Korea

Abstract

Future planning has received greater attention globally due to the longer lives of individuals with intellectual and developmental disabilities and limited long-term services and supports in the adult disability system (Hewitt, Agosta, Heller, Williams, & Reinke, 2013). As individuals with intellectual and developmental disabilities live longer, parents may not be able to fulfil their caregiving roles in the future. However, many adults with intellectual and developmental disabilities still live with their parents and have no plans for when parents will no longer be able to provide caregiving (Anderson et al., 2017). To alleviate the burden of family caregivers, future planning has emerged as one solution (Smith, Tobin, & Fullmer, 1995). Future planning is defined as planning activities which include both aspirational and definitive activities in different domains (i.e. residential, financial, legal, and leisure or social plan) to enhance quality of life of individuals with intellectual and developmental disabilities (Burke, Arnold, & Owen, 2018). Similar to European and American countries, future planning issues are getting more attention in Asian-Pacific countries. In South Korea, the rate of ageing for individuals with disabilities is progressing two to three times faster than the general population. In the case of Seoul City, the increased rate of ageing was reportedly 10.3% for those over 50 years of age and 12.7% for those over 65 years of age, compared to the rate in 2008 (Kim, Roh, & Goh, 2018). With individuals living longer than ever, almost 80%-90% of individuals with intellectual and developmental disabilities-more than 190,000 individuals-reported that they would like to live either with family,

Caregiving and future planning perspectives of siblings of individuals with intellectual and developmental disabilities: Insights from South Korea, Japan and Taiwan

“…For example, a study by Hwang and Charnley (2010) examined Korean siblings' childhood experiences and reported frequent experiences of negative public attitudes toward their autistic siblings and themselves. When exploring adult Korean sibling experiences, 61.1% of adult siblings engaged in future‐planning by talking about the future with the whole family (Lee & Kim, 2021), but did not engage in many definitive future‐planning activities (i.e., set up financial, residential and legal plans) and felt less prepared for their caregiving roles. This finding is alarming because if siblings engage in greater caregiving activities, they would need to carry out future‐planning activities with family members.…”

“…Most studies that conducted within‐country comparisons exploring sibling experiences are relevant within that country, but not for cross‐country comparisons (Chiu, 2021; Lee et al, 2021; Lee & Kim, 2021). Therefore, to address this research gap, the present study explored and compared experiences of caregiving, future planning activities and barriers reported by siblings across South Korea, Japan and Taiwan.…”