A Mother's Perceptions of Her Ongoing Advocacy Efforts for Her Son with Significant Disabilities: Her Twelve-Year Journey

Students with significant disabilities represent less than one percent of the overall population of individuals with disabilities in the United States (Alper, 2003). Many of these students first enter the special education service delivery system by receiving early intervention services in response to the complexity of their physical, cognitive, or sensory needs (Bailey et al., 1998). In addition to the public educational services mandated by the Individuals with Disabilities Education Improvement Act (IDEIA) of 2004 for both Part C (i.e., birth to three years of age) and Part B (i.e., 3 through 21 years of age), children with significant disabilities and their families often require additional supports and services across the lifespan. Singer (2002) asserted that, while intended to support families and their children with significant disabilities, these services actually can be perceived by families as stressors if there is not a goodness of fit between those services and the family's perceptions of their own needs and priorities. Researchers also have identified that families potentially experience stressors as their children with significant disabilities transition from early intervention services in natural settings to special education services in schools (Fowler, Chandler, Johnson, & Stella, 1988; Rous, Myers, & Stricklin, 2007; Soodak & Erwin, 2000). When children with disabilities enter the school-based special education service delivery system, the IDEIA mandates their parents be included as active participants in the educational decision-making and planning process. When considering the highest level of family participation in special education services for their children, it is recommended that parents and professionals collaborate to identify appropriate curriculum content, plan appropriate special education and related services to provide effective instruction on that content, and ensure placement in the least restrictive environment. Researchers assert, however, that the degree to which parents actively participate in their child's educational decision-making process might be determined in part by two factors: (a) the procedures used by their school system to meet this legal mandate; and (b) barriers to parent-professional collaboration perceived by the parents, particularly parents of low socioeconomic status and with culturally diverse backgrounds (Harry, Klingner, & Hart, 2005; Kalyanpur, Harry, & Skrtic, 2000). For example, one barrier to parent-professional collaboration perceived by parents is limited efforts from professionals to obtain the parents' input during the decision-making process related to their child's special education and related services, and placement options (Harry, Allen, & McLaughlin, 1995). Research suggests that families with a child who has significant disabilities frequently must advocate for the most appropriate curriculum content, instructional services, and educational placement. For example, parents reported feelings of exhaustion and frustration when advocating for placement in the environment they believed to be the most appropriate educational setting for their child, such as inclusive general education settings (Soodak & Erwin, 2000). The ongoing need for parents to advocate for such educational placements for their child might take an emotional and a financial toll on families (Kluth, Biklen, English-Sand, & Smukler, 2007; Ryndak, Storch, & Hoppey, 2008). Additionally, it is suggested that parental advocacy and active participation in the educational decision-making process for their child may be negatively affected by cultural constructs of disability (Cho & Gannotti, 2005; Harry et al., 2005). That is, cultural differences among parents and professionals, including differences in beliefs about disabilities, might affect the extent to which parents of children with significant disabilities have consistent opportunities for active participation in the decision-making process related to curriculum content, instructional services, and placement in the least restrictive environment. …