“You Don’t Know What You Don’t Know”: Parent Perspectives on Navigating Disability-Related Information and Resources

We examined the priorities parents hold for their children with disabilities and the pathways through which parents access needed information and resources related to these valued areas. Our sample included 405 parents of children (ages 12 and under) who experienced a diversity of disabilities and varied support needs. Although each of the parents wanted their children to experience an array of formative experiences, the extent to which parents were familiar with local resources related to these important areas was uneven and often low. A constellation of barriers was said to stand in the way of connecting to the information and help they needed. When searching for disability-related information, parents often turned to a combination of sources, including professionals and technology.