The “Hows” and “Whys” of Parental Future Planning for Adults with Intellectual Disabilities: An Interpretive Description Inquiry




Caines, Megan

Journal Title

Journal ISSN

Volume Title



This study focuses on parental future planning for adults with intellectual disabilities. In recent years, the need for parents to engage in future planning for their offspring with intellectual disabilities has been increasingly emphasized. Within the literature, a number of approaches to future planning have been identified, including both formalized approaches (i.e., creating clear, explicit, and largely unchanging plans for the future of the individual with an intellectual disability) and more informal approaches (i.e., designating a person or a group of people to oversee the well-being of the individual with an intellectual disability without necessarily providing specific guidelines relating to the individual’s future care). Despite growing understanding that parents may approach developing future plans in different ways, to date, research on future planning has largely been focused on exploring formalized, concrete approaches to future planning. Using an Interpretive Description methodology, in which semi-structured interviews were conducted with 28 parents of adults with intellectual disabilities, this study sought to gain a greater understanding of parental future planning in real life practice in the province of British Columbia. Results revealed that while the parents in this study often utilized several future planning approaches -- both formal and informal -- when engaged in planning, they could be classified into two broad categories: Concrete Planners and Informal Planners. In addition, the results of this study also highlight key factors that may distinguish between parents who plan more formally and parents who plan more informally. Overall, these result highlight important avenues for future research and policy and practice; which, ultimately, may lead to important changes regarding how best to support aging parents of adult children with intellectual disabilities as they face the challenging task of planning for the post-parental care phase of their adult child’s life.



future planning, caregiving, caregiver, developmental disability, intellectual disability, aging