Today, as a result of self-advocacy, the advocacy of family members, shifts in policies and regulations, and advances in many fields (e.g., medicine, critical disability studies), individuals with intellectual and developmental disabilities (IDD) are continuing to pursue their rightful place in society as equal, powerful, and valuable members of the human community. Families, broadly defined, often play a critical role in these efforts (Dowling & Dolan, 2010; Manago, Davis, & Goar, 2017). Families serve as a source of support for all individuals, including individuals with IDD, across our lifespans, and it is important that researchers, practitioners, and policy makers understand the experiences of individuals with IDD and their families and explore how to best support families who provide support to children and adults with IDD (AAIDD and The Arc, 2014; Hewitt et al., 2013).
In 2015, AAIDD identified supporting families as one of its National Goals in Research, Policy, and Practice, stating that families form a core unit of our society, and people with IDD often receive the majority of their emotional, physical, and material support from their families throughout their lives (Reynolds et al., 2015). To better understand how families can maximize their capacity, strengths, and unique skills to support their family members with IDD, more information on families, their needs, and what constitutes successful outcomes is necessary (Reynolds et al., 2015). This special issue contributes to this mission by collecting articles related to experiences of family members of individuals with IDD and their interactions and partnerships with professionals across the lifespan.
As we worked on this special issue, we were looking for current, innovative research that would highlight the role of the family in the lives of individuals with IDD through a strengths-based and family empowerment stance. As we reviewed submissions, four themes emerged that guided our choices of the work you will find in this issue (a) families are unique and the voices of all families should be heard and honored; (b) families are powerful and their roles, strengths, and needs should be valued; (c) individuals with IDD are key players in their families' lives and in their own lives and their perspectives and needs should be included when developing support systems; and (d) efforts to apply a critical lens to existing constructs around disability, supporting individuals perceived as disabled, and race are readily available and much needed in our field.
First, the articles in this special issue reflect that families are unique, and researchers and practitioners need to attend to the broad context of an individual's family. Many individuals with IDD receive support from families that are defined differently from how members of the dominant culture define family or who bring different strengths to the table than those characteristics the dominant culture may define as strengths. Thus, celebrating diversity in family structures, identifying each family's strengths, and leveraging those strengths is critically important to our field's work. Yet, there is still limited research on families with individuals with IDD who are culturally and linguistically diverse and/or that frame the experiences of family from the nondominant culture as strong and valuable, as National Goal 1 charged (Reynolds et al., 2015). Articles in this special issue contribute toward filling this gap. For example, Dababnah and colleagues explore how Black families in the United States advocated on behalf of their young children for access to services through diagnosis and Francis et al. reveal the efforts of Hispanic mothers in advocating for their children's post-school success. Similarly, there is limited research that explores the various ways in which families compose themselves and the unique relationships that define any one person's family (see also Goal 2, Reynolds et al., 2015). In this issue, Yang and her colleagues report on their exploration of grandparents' perspectives on their roles in the lives of their grandchildren with IDD.
Second, the notion of professionals as experts is discussed in many of the articles in this special issue. The authors encourage us to recognize and respect the superior expertise of the family and individual. Families are likely to support one another throughout the lifespan, and, in doing so, they become the experts on the resources, skills, and needs of their family and its individual members, including the individual(s) with IDD. The articles included in this special issue highlight that professionals, such as teachers (Wilt & Morningstar), health care providers (Dababnah et al.), and policy makers (Caldwell et al.), must partner with families to help them navigate barriers across systems and to pass through gatekeepers (e.g., to funding, to information, to services). This requires professionals to defer to the family's expertise and to honor the relative permanence of family members' roles in one another's lives and the professional's relatively temporary role (see Goal 3, Reynolds et al., 2015). Implied in these admonitions is the charge to ensure that we, as professionals and therefore gatekeepers ourselves, do not act as barriers. Instead, we must commit ourselves to self-awareness and purposeful partnership with individuals with IDD and their families.
To that end, we must recognize individuals with IDD as the powerful players they are in their own lives, in their families, and in the development of supports to promote their quality of life and that of their family members. Careful attention to ensuring that efforts to support families of individuals with IDD do not minimize or compromise the individual's voice are essential to effective supports and a field committed to justice and equity for all. Although the purpose of this special issue was to highlight the perspectives of family members, we hope you will find that each contribution herein reflects equal respect for the individuals with IDD who did not directly participate in the research about their families. We encourage all future researchers to attend to this, and we look forward to innovative, rigorous research that incorporates the perspectives of individuals with IDD and their family members together.
Finally, we saw reflected in the articles in this special issue an interest in increasing attention to critical analysis of the racial, cultural, and disability constructs that are inherent to any social interaction and that are essential to consider in a field such as ours that is devoted to the support of a marginalized group (i.e., individuals with IDD and their families). You will find references to efforts to critically examine our notions of disability (Wilt & Morningstar), of race (Dababnah et al.; Francis et al.), of family structures and boundaries (Yang et al.), and of empowerment and resilience (Caldwell et al.) in this special issue. We hope this trend continues in subsequent research and in pursuit of the National Goals for Supporting Families Across the Life Course (Reynolds et al., 2015).