U.S. state agencies are charged with addressing the service and support needs of residents with and without disabilities. Undertaking this task effectively requires having familiarity with the array of available disability-related resources and programs--both within and beyond one's own agency. We asked 212 staff from 13 state agencies about their…

Tuberous sclerosis complex (TSC) is a genetic condition characterized by both medical and neuropsychiatric diagnoses that emerge across the lifespan. As part of a clinical trial, caregivers of children with TSC were interviewed about their experiences navigating medical, school, and social services. Semistructured interviews (N = 20) with…

Careful research and compilation of the best data available has earned "The Complete Resource Guide for People with Disabilities" the honor of being a repeat recipient of the National Mature Media Award and the National Health Information Award, as well as being a go-to resource among educators, librarians and the disability community.…

Although social groups have "insiders," this construct has not been measured within the disability advocacy community. Examining 405 individuals who applied for an advocacy training program, this study examined the nature of insiderness within the disability advocacy community and ties to individual roles. Participants showed differences…

Familiarity with local disability information and resources can impact the ways educators support students with disabilities and their families. We surveyed 462 educators regarding their awareness of and access to disability-related information and resources. Specifically, we examined (a) their familiarity with resources and services across…