INTELLECTUAL AND DEVELOPMENTAL DISABILITIES ÓAAIDD 2019, Vol. 57, No. 2, 146–157 DOI: 10.1352/1934-9556-57.2.146 Understanding the Systems, Contexts, Behaviors, and Strategies of Parents Advocating for Their Children With Down Syndrome Kristen Krueger, Jessica D. Cless, Meghan Dyster, Mollie Reves, Robert Steele, and Briana S. Nelson Goff Abstract In the current qualitative research study, we focused on understanding the ecological systems, contexts, behaviors, and strategies of parents (N ¼ 435) advocating for their children with an intellectual and developmental disability diagnosis, specifically Down syndrome (DS). Based on the data analysis, parents of children with DS advocate for their children frequently, in a variety of settings, with different actions, attitudes, motivations, and outcomes. The most common settings where advocacy occurred were primarily school and healthcare systems. The goals of parents often included inclusiveness, equality, and acceptance, whereas a few parents reported advocating due to discrimination and judgment. Implications for further research and professional practice also are described. Key Words: parental advocacy; Down syndrome; parents; parenting; qualitative research By its nature, advocacy is a broad concept that includes several definitions and strategies. Advocacy has been described as ‘‘the promotion of specific messages and/or course of action in order to influence or contribute to the development and implementation of public policies, which will alleviate negative consequences’’ (Watson, 2015, p. 10). It may also involve public education and influencing public opinion, implementing research to improve quality of life or to provide solutions to problems, lobbying and implementing necessary changes to improve policies and practices, and mobilizing individuals to take action to bring necessary social changes (Watson, 2015). Advoca- cy may include a range of behaviors or actions by individuals or groups that target a cause, idea, or policy; however, there is no agreement about which activities constitute advocacy (Reid, 2000). Macro-level advocacy, such as influencing policy and lobbying for changes, plays a crucial role in promoting social equality. However, advo- cacy may also take place in micro-level environ- ments, in which individuals and families advocate for improved quality of living for those with whom they have a direct relationship. Parents of children with intellectual and developmental disabilities (IDD) have described the importance of advocacy as a means for actively coping with the diagnosis (Ewles, Clifford, & Minnes, 2014), as well as improving support services for their child (Minnes & Steiner, 2009; Wang, Mannan, Poston, Turn- bull, & Summers, 2004). Advocacy efforts have also been described as a source of empowerment for parents (Hess, Molina, & Kozleski, 2006), which may be especially important for parents of children with an IDD diagnosis who may encounter challenges with coordinating care with multiple professionals within numerous systems of care over the course of their child’s life (Maes, Broekman, Dosen, & Nauts, 2003; Vohra, Madhavan, Samba- moorthi, & St Peter, 2014). According to the National Down Syndrome Society (2017), advocacy involves actions that demonstrate support for an issue, often related to healthcare and health research, education, employ- ment and economic independence, and integration into the community. Researchers have described the need for advocacy in specific settings, including education (Burke, 2015; Burke & Hodapp, 2014, 2016; Francis & Nagro, 2018; Francis et al., 2016; Hess et al., 2006; Rehm, Fisher, Fuentes-Afflick, & Chesla, 2013) and healthcare settings (Kuo et al., 2012; Minnes & Steiner, 2009; Prussing, Sobo, Walker, Dennis, & Kurtin, 2004). There is also 146 Parental Advocacy