Our main audience consists of parents and caregivers of adults who have Down syndrome. This includes siblings as well as professional caregivers. Parents of children who have Down syndrome are also interested in learning about our experiences. Professionals such as lawyers, policy makers, people in the healthcare and disability fields, researchers and educators will benefit from the ability to address our specific community.
The Road We’ve Shared (TRWS) focuses on caring for and supporting people who have Down syndrome and are over the age of 18. Existing groups have traditionally focused on the more active demographic of parents of young children and their needs; however most people living with Down syndrome are adults. We are lucky to be living in a time when the life expectancy of people who have Down syndrome has doubled since our children were born. While this is wonderful news, it also presents unique needs for information and caregiving. The problem is that some of this information is not readily available, and some may not even be written yet. TRWS will be instrumental in gathering and creating some of this knowledge by sharing our experiences with each other and learning as we go. We offer support for things like finding appropriate work and living options, promoting a healthy lifestyle for adults who are prone to sedentary routines, and planning for a future that includes difficult decisions like guardianship and finding life-long care once parents are gone.
MAIN BRANCHES OF FOCUS:
Health / Research:Alzheimer’s disease
Aging in place
Social History / Outreach:Narratives