II. Background

A. In Family We Trust

Anchored in early twentieth century efforts by parents advocating for their children’s “educability” and rights to attend school[4] families are viewed as critical to supporting and communicating needs of people with disabilities. Current day focus on parents as advocates is manifest in the ever expanding “Warrior-Hero Mothers” phenomenon; warrior-hero is a frame of reference for profiling the efforts of mothers fighting for understanding and support for their sons and daughters with Autism. The term warrior-hero stands in stark contrast to Post World War II era understandings of Autism in children as related to parenting deficiencies, particularly parents’ failure to show adequate affection to their children.[5]

Evolving views of parents as advocates and experts in the needs of their children are part of a broader neo-liberal ideology upholding family “as a symbol of warmth and emotional bonds”[6], as “naturally given and socially and morally desirable”[7] and thus, the natural and best provider of care. Accordingly, acts governing mental capacity, and corresponding resources to support families in planning for their members who have disabilities, are predicated on assumptions that adults who lack capacity would want their family caregivers making decisions on their behalf. [8] 

1.     Elevating the Work and Voices of Family Caregivers

The extensive and constant demands of caregiving are reflected in discussions of caregivers as “unsung heroes”[9] and caregiving as synonymous with “being responsible for”.[10] Researchers who study stress and coping in families who have members with disabilities have found an array of forms of stress including financial, temporal, and occupational stress[11], and the stress of ‘courtesy stigma’, that is, disability by association, experienced by families.[12] The demands of caregiving have been associated with family ‘dysfunction’ in the form of ‘negative’ coping strategies [13] and unhealthy caregiver lifestyles.[14] Studying caregiving parents in particular, some researchers note that keeping pace with care needs once a child with disabilities becomes an adult is distinctly difficult[15] while other researchers point out that parents of adult children with disabilities experience a unique form of stress in the “against the grain” quality of an adult child not attaining independence in ways that are typically expected.[16] In building understandings of stresses inherent to the extensiveness of care provided by parents, we learn little about the perspectives of care receiving adult children. 

B. Understanding Adults with Disabilities within their Family Care Contexts

1. Familiarity and Compliance

Voices of adults with disabilities may be relatively difficult to discern within interactions among family members given that familiar interactions tend to be characterized by habitual and compliant behaviors. A line of critical examination of evidence of self-determining behavior by adults with disabilities was undertaken in the 1980’s when the community living movement was in its early stages. Rooted in concern for whether people with disabilities truly exercised self-determination, Mayer Shevin and Nancy Klein [17] along with Gloria Kishi and colleagues [18] provided early cautions against confusing habitual behavior and passive compliance for enacting choice and/or giving consent. In this era, concern was focused on self-determination for adults with disabilities in formal care and service settings such as vocational programs and group homes. Similarly themed critical examinations have more recently been extended to informal, unpaid care environments of home and family. A number of researchers call attention to the intertwined nature of caregiver/care receiver relationships between parents and their adult children with disabilities and discuss how these ties are characterized by adult child compliance.[19] Indeed, expectations for compliance by adults with disabilities are implicit in the very resources created to guide families in planning for the future of adults with disabilities. For example, the “Safe and Secure” handbook, developed by Al Etmanski and colleagues, and widely used in Western Canada, emphasizes the centrality of “family” vision and control. [20] In the “Safe and Secure” resource, formal care systems are characterized as replete with potential for adults with disabilities to “fall through the cracks” and contrasted with hopes and needs of concerned, caring families.[21] Families are urged to take control and create care plans. In adopting a take charge stance recommended in this handbook, strong, articulate voices of families take precedence, both subtle and obvious, over less conventional voices of adults with disabilities.[22] 

2.     Differing Views

We are concerned about structured processes, such as those recommended by planning resources, which are built upon, and reinforce, families taking charge/adults with disabilities complying and our concern is shored up by research accounts of ways in which views of adults with disabilities differ from the views of their caregiving parents. Differences in views may be evident in accounts provided by caregiving parents. For examples, Catherine Thornberry and Karin Olson[23] found tendencies by caregiving parents to infantilize their adult children with disabilities while Williams and Robinson[24] present reports by parents that include parents disputing their son or daughter’s beliefs in their own capabilities. Indeed, compared with care receiving adults with disabilities, their caregiving parents place greater emphasis on care receiver dependence.[25] Some researchers design their studies to draw out and compare caregiver versus care receiver views by interviewing care receivers separate from caregivers or by examining information from professionals working with adults with disabilities.[26] In their study of decision-making over housing options for adults with developmental disabilities, Laura Bowey and Alex McGlaughlin highlight problems inherent to habits of compliance with their findings that adults with developmental disabilities were reluctant to verbalize their own wishes in the interest of avoiding conflict with their caregiving parents. 

Differences in family member viewpoints are evident in studies where caregiver/care receiver voices are collected separately yet this work is in its emerging stages. We elaborate on this line of inquiry by contributing an analysis of family level data where multiple perspectives have been obtained from within each family, most often as part of group interview processes. In our group interview data, families not only describe, but also enact, caregiving and care receiving roles. We augment these family perspectives with focus group data from representatives of agencies supporting adults with disabilities and their families thus incorporating paid support sector perspectives on family level interactions, needs and decision-making.