Navigating Change in Supporting Individuals and their Caregivers as they Age

“What will happen when I am not around?” is a refrain that Susan hears regularly when talking with parents of children with disabilities. As a parent of an adult child with intellectual and developmental disabilities (I/DD), she shares these concerns. These thoughts of the future fueled her interest in learning more about the impact of aging on persons with I/DD, how services for older adults are structured, and the perspective of family caregivers.

To better understand these concerns, Susan recently spoke with a number of parents of adults with I/DD. They raised a number of questions as both they and their child age: Should my son or daughter go to senior services programs? What does retirement look like for my son or daughter, who may have minimal or no work experience? What medical issues are natural results of aging and which are related to his/her disability? How do I talk about end of life care, death, and dying? What can I expect my other children to take on when I am no longer here? Who will do all the things I do for my son/daughter?

These are all important questions that are becoming more salient today as people with disabilities are living longer than ever and many are cared for at home by aging caregivers. Caregiving families with children or adult family members with I/DD comprise 17% of the total population of people with I/DD (The State of the States in Developmental Disabilities Project 2015). This demographic presents a number of challenges to a system that is already stretched to meet the growing needs of younger and working age individuals with I/DD.

The intersection of aging and disability is taking on greater importance as individuals with lifelong disabilities are aging and longevity is increasing in the general population with concomitant increases in chronic and disabling conditions. The UCEDD network is uniquely poised to help address this emerging issue. Through our wide network, we are learning more about caregiver and family supports, retirement planning for persons with I/DD, how to engage siblings, approaches to end of life care, and how to bridge the divide between aging and disability service systems. The UCEDD network, in partnership with individuals with I/DD and families, is figuring out how to navigate these murky waters and charting new territory.

Susan Fox, PhDsusanfox-headshot
Co-UCEDD Director
President and CEO
Westchester Institute for Human Development
in affiliation with New York Medical College