I. Introduction

Despite decades of human rights enlightenments, adults with developmental disabilities continue to experience among the most poorly understood support needs and preferences of any population.[1] Adults with disabilities have relatively less access to social inclusion and as part of an overall aging population, these adults are increasingly outliving the support capacity of aging parents and do not often have spouses and children to turn to for support. In addition, voices of adults with disabilities, because they are often expressed in less conventional forms, are under-represented in professional interactions and research related to support.[2] In sum, adults with disabilities live with a paradox of having amongst the most pressing of support needs yet the greatest difficulties in having their needs understood and addressed. 

Caregiving parents are instrumental in communicating and supporting needs and preferences of adults with disabilities. Caregiving advocates and scholars have diligently built understandings of the contributions of caregiving parents by upholding family care and support as a precious resource without which, formal social programs would be overwhelmed to the point of collapse. Countries compile estimates of the monetary value of the work of informal caregivers and a robust body of research is dedicated to understanding stress associated with the work of caregiving. While we have achieved more respectful understandings of caregiving, including in terms of its often immeasurable value, these understandings come partly at the expense of adults with disabilities as they are derived mainly by studying the perspectives of caregivers rather than care receivers. This paper commissioned by the Law Commission of Ontario is rooted in concern that focusing on caregivers, while important, shifts attention away from the perspectives of adults with disabilities. The purpose of this paper is to illuminate whether, how and to what extent voices of adults with disabilities are “heard” within their family caregiving contexts and to discuss the implications of this for legal principles of capacity, decision-making and guardianship in relation to adults with disabilities. 

Theoretical Framework

This paper is theoretically anchored in frameworks of disability studies and social capital. Deriving from disability studies, our focus is on developing more sophisticated approaches to hearing and responding to voices of adults with disabilities rather than on remediating communication impairments of adults with disabilities. Further guiding our work is Alejandro Portes’ discussion of social capital.[3] Referencing Bourdieu’s idea of social capital as encompassing the support and opportunities that accrue as result of being part of networks of relationships, Portes cautions against viewing such networks as “unmixed blessings”. We believe adults with disabilities derive tremendous support and opportunities from their caregiving networks. But membership in these networks can also obscure the expression of needs and preferences by adults with disabilities given comparatively strong voices of caregivers. Disability studies and social capital concepts are used to focus this paper on building capacity to understand and address needs and preferences of adults with disabilities amidst the supporting and obscuring that can occur in caregiving.