V. Discussion

More than a decade ago, Harriet Lefley and Agnes Hatfield spoke of the need for planning in relation to “the greying of the deinstitutionalized population.” [30]  Indeed, the aging of our population will continue to intersect in new ways with needs arising from cognitive impairment. Adults with disabilities are almost guaranteed to experience changes in care arrangements in their final decades of life and our persistent climate of fiscal restraint surrounding these changes makes it increasingly important that endeavors continue towards hearing and responding to efforts by adults with disabilities to direct their own lives. Jonathan Potter and Alexa Hepburn use the concept of “footing” to invoke critical examination of interactions that occur during research interviews.[31] These authors are calling upon qualitative researchers to take more careful account of interviewer/interviewee position relative to each other. We suggest that “footing” is a useful concept for thinking about voice within families in relation to decision making.

Our findings leave us cautiously optimistic about potential for adults to be on sound footing to have their views understood and responded to within their family caregiving contexts. Our optimism stems from detailed evidence of family caregivers facilitating equal footing by acting as respectful, supportive voices for their child or sibling with the use of prompting and clarifying questions that are effective yet not overbearing. Pauses and silences are used to allow processing time for footing to be gained and ideas expressed. Amidst a lively focus group discussion, Lindsay creates space for her sister Ruth to “represent herself”. Interactions between Janice and her son Mike with Down Syndrome and limited verbal abilities, demonstrate Janice’s ability to strike a balance between facilitating and respecting Mike’s voice with gentle probes yet retreating when Mike holds his footing by saying no or projecting a closed silence.

At the same time, we have evidence of care identities from which it is difficult to disentangle the views of adults with disabilities as their voices can be diminished or negated in conversation. Such is the pronounced experience of Crystal, an articulate woman diagnosed with PDD, OCD and Schizophrenia, who speaks about her symptoms and adjustment to medication only to be contradicted by her mother, Maria. Crystal established solid footing relative to the researcher by opening the interview with questions and conversation about graduate education. Yet after an early contradiction by Maria, Crystal does not regain momentum to continue to share her perspectives about the impact of her medication on her schizophrenic voices. Further, Maria’s dedicated and authoritative style of support leaves Crystal’s siblings reluctant to “hold their own” by freely sharing their insights and vision for their sister in Maria’s presence. In Crystal’s family, a key caregiver has longstanding and pervasive control over Crystal’s care, including the ways in which other family members are involved. Accordingly, formal agencies are obligated to follow the lead of the main family caregiver(s) to the exclusion of ideas from other family members including the adult with a disability.

Uneven footing for adults with disabilities is also evident amidst family caregivers who act as “fierce defenders” against the system. Parents and siblings defend their family’s dignity and rights to live a normal life as they resist intrusion and exposure to professionals. They specifically defend the humanity of, and growth opportunities for, their family member with disability amidst systems full of cracks and insufficient resources. While these efforts by families, and the results produced (such as access to inclusive education, respite, effective residential support) may be admirable, we caution that a fierce defender stance can dominate a family’s identity such that views of the adult with a disability are only assumed to be represented.  

Our findings illustrate some of the many ways in which footing for adults with disabilities can be fragile amidst their caregiving contexts. To the relatively obvious and well established concerns with potential for families to be dishonest and abusive, we provide evidence of ways in which even the most dedicated of families can obstruct voices of adults with disabilities. Our recommendations to legal practitioners committed to supporting adults with disabilities in directing their own lives centre on the idea of involvement of an external, decision facilitator towards counteracting fragile footing. 

A.    Incorporation Of External Decision Facilitation

In light of ways in which lives of caregivers and care receivers can be intertwined, incorporating an external decision facilitator increases potential that interests and needs of adults with disabilities that may go un-noticed amidst familiar interactions, will be identified. A well-equipped external decision facilitator would possess understanding of the history of devaluation of people with disabilities including the role of families in fighting for the rights of their family members. Although rights are relatively well established in Canada, families continue to face stigma and tests of endurance in securing access to appropriate supports and services. Indeed, as our agency representatives and families attest, service providers require documentation of deficits and problems to justify service provision[32] and families can be left feeling exposed and intruded upon. As such, decision facilitators would hold high regard for the invaluable contributions made by families and a commitment to advancing the interests and needs of family caregivers. To honour families’ sense of boundaries and privacy, we recommend decision facilitator relationships be framed in “guest-host” terms in accordance with family nursing approaches wherein nurse practitioners are ever mindful of their status as guests when providing nursing care in the intimate home environments of patients.[33] At the same time, it is important for decision facilitators to be keenly aware of potential for collective and individual family journeys to impact the ways in which caregiving family members present needs and interests of adults with disabilities. Well-equipped decision facilitators can play an important role in supporting families to critique their own established patterns in terms of potential obstructions to expression of interests and needs by adults with disabilities. Decision facilitators are advised to review a series of short videos, produced by the Social Care Institute for Excellence in the United Kingdom, which illustrate navigation of decisions about topics such as safety, money and treatment amidst the dynamics of needs for care. [34]  

B. Accessing Multiple Caregiver Perspectives

We recommend that decision facilitators engage with as many members of the caregiving family of the adult with disabilities as possible. We supply evidence of caregiving family members as offering extensive insights into the interests and needs of adults with disabilities. At the same time, we find different and sometimes competing facets of interest and need provided by different caregiving family members and we are confident that obtaining multiple perspectives from within families will enrich decision-making. Further, agency providers of formal care have distinct perspectives on interests and needs of adults with disabilities and their views ought to be included wherever possible.

C. Hearing Individuals with Disabilities

At the most foundational level, an external decision facilitator will ensure provisions are made to accommodate adults with disabilities in having their less conventional voices hear.  

1. Technology-based Supports

A burgeoning array of technology-based augmentative and alternative communication options exist. Decision facilitators would be advised to consult resources such as the newly revised text by David Beukelman and Pat Mirenda on Augmentative and Alternative Communication for a consideration of options [35] Further, given the growing prevalence of brain injuries resulting from stroke, journals dedicated to aphasiology (which target understanding and responding to “aphasia”, a scientific term for communication comprehension and articulation difficulties) are particularly sound resources for keeping abreast of augmentative and alternative communication developments. 

2. Non Technology-based Supports

Non-technology supports, many of which are common-sense yet get overlooked in the interest of expediency, are also abundant. At the simplest level, decision facilitators are advised to be attentive to stress that can be caused by time pressure. Accordingly, creating a context for decision-making interactions that entails speaking at an unrushed pace and providing extra time for responses is recommended. Using short, simple, high frequency words can help generate fuller responses. Building from here, rewording questions that do not seem well understood, posing closed ended questions and offering suggestions can be useful strategies as can taking time out when understanding of a topic is not clear.[36]  Booth and Booth remind that communication with inarticulate subjects can entail considerable creative guess work.[37] Blake Poland and Ann Pederson add points about insights that may accrue by attending to meanings of silence in conversation with adults with disabilities and note that silence tends to be overlooked as it appears to be opposite to, rather than part of, speech.[38] Relatedly, speech language specialists have developed orthographical transcription practices to support fuller understandings of people with speech disorders. Orthographical transcription entails meticulous recording and examination of speech/vocalizations including dis-fluencies, such as hesitations and stutters, as well as changes in inflection, in audio and video recorded conversations and subsequent transcriptions of these conversations.[39]

Policies and practices related to aging populations have been focused on meeting care needs for elders with little attention given to how caregiving roles, such as lifelong care for a child with disabilities, being vacated by elders, will be filled. In this paper we address this “beyond parent care” gap by examining and making recommendations for ways that adults with disabilities can be more fully supported to direct their own lives.

D. Limitations

Our findings are limited because our samples are biased by self-selection that favors family caregivers who are highly involved in the lives of their sons/daughters/brothers/sisters as well as prepared to discuss and demonstrate their involvement. The ways in which dedicated caregivers can obstruct voices of adults with disabilities heightens a sense of urgency that we, and our colleagues, should study effects of less involved family members on voices of adults with disabilities, perhaps from perspectives of agency representatives given the relative inaccessibility of less involved family members. 

Our findings are further limited by the small size of our samples. In particular, and consistent with our recommendations for communication accommodation, we continue to grapple with methodological steps necessary to engage first hand perspectives of adults with disabilities in research studies. Aligning with the spirit of this commissioned paper, we will continue our endeavors to capture these under-represented voices and we will encourage our colleagues in this pursuit.