The phenomenon of legislative advocacy among parents of children with disabilities

Although parents of children with disabilities have forged systemic changes for individuals with disabilities, little is known about the phenomenon of legislative advocacy (LA) including methods and barriers. In this United States-based study, 49 parents of individuals with disabilities participated in focus groups about LA reporting both positive and negative experiences with LA. One focus group was held in Spanish; notably, none of the Spanish-speaking parents reported experiences with LA. When discussing methods of LA, parents reported a variety of strategies including: building relationships, educating legislators, collective advocacy, and encouraging fathers and other parents to meet with legislators. Parents also reported barriers to LA: lack of knowledge, disempowerment and feeling overwhelmed. Implications for research to better understand LA and policy are discussed.