Caregivers of Adults with (I/DD)


We often think of older adults as care recipients, but for parents of adults with Intellectual and Developmental Disabilities (I/DD), their caregiving journey can extend into their final years. What can a parent do to plan for their adult child’s care after they’re gone? Today we hear from Paula Gann about this and other questions she faces as a caregiver to her daughter Kyle, who lives with Down Syndrome and Alzheimer’s. We also talk to Kristin Rains, an Independent Dementia Care Trainer, and Shawn Ullman, Senior Director of National Initiatives at the Arc to hear their advice on future planning for caregivers, and for society. To find documents to help with future planning, visit The Arc’s Center for Future Planning and if you have questions for Kristin, you can reach out to her directly at [email protected].


PAULA GANN is an advocate and caregiver to her daughter, Kyle, and co-facilitates a Down Syndrome Connection of the Bay Area support group for family members with Down Syndrome and Dementia.


KRISTIN RAINS, MSW, is an independent dementia care trainer based in the San Francisco Bay Area. She specializes in training caregivers of adults with Down syndrome or other intellectual or developmental disabilities. She is certified with Teepa Snow’s Positive Approach to Care as well as the National Task Group on Intellectual Disabilities and Dementia Care Practices. She previously worked for The Arc San Francisco as a Health Advocate and for many years as a Social Worker focused on home care services for seniors. She is a mother of two young adults, one of whom is on the autism spectrum and is looking forward to once again dancing Lindy-hop in Golden Gate Park

SHAWN ULLMAN is Senior Director of National Initiatives at The Arc. Ullman leads The Arc’s individual and family support initiatives, which seek to provide reliable information and assistance to people with I/DD, their family members, and the professionals who support them on topics such as navigating special education and disability services, healthy aging, housing, decision-making, financial planning, and healthy relationships. Prior to joining The Arc, Shawn was a staff attorney with Disability Rights DC, the protection and advocacy agency for the District of Columbia, for 11 years where she advocated for children and adults with developmental disabilities to obtain the services and supports they need to live, learn, and work in the community. Shawn received her bachelor’s degree in political science from DePauw University in 1997 and her law degree from Georgetown University Law Center in 2001.