Research Statement
Rough Draft
Disability impacts the lives of many Ontarians, and the numbers of people with disabilities is increasing as the population ages. Today, over 15% of Ontario’s population has a disability, including more than 40% of people over age 65. About 1.85 million people in Ontario have a disability. That’s one in seven people. Over the next 20 years, as the population ages, the number will rise to one in five Ontarians. Given this expected increase in disability, it will be of critical import to explore new and innovative ways to fund and support community integration and independence. One innovative solution that fosters community inclusion is the The Self-Managed Attendant Services in Ontario Direct Funding Program–known more simply as the Direct Funding Program – is administered by the Centre for Independent Living in Toronto (CILT). The program, piloted in
1995–96, was established as a permanent program in 1998 and is funded through
the Ontario Ministry of Health and Long-Term Care (Parker et al. 2000). Direct Funding (DF) is an innovative program enabling adults with physical disabilities to become employers of their own attendants. Attendants support engagement in a variety of meaningful occupations. As employers, participants are fully responsible for managing their own employees within a budget that is developed on an individual basis. Self-managers, those who access the attendant care program, are responsible for recruiting, hiring, training, and managing attendants, all while being accountable to local, provincial, and federal agencies. Evidence suggests that the DF program allows users to have a greater degree of autonomy and flexibility than would be afforded by the institutionalized approaches to supporting people with disabilities (Ben-Moshe, Chapman, and Carey 2014.
Access to quality attendant services is framed as a right that enables people with
disabilities to fully participate in society, making the Direct Funding Program
an interesting case study with which to explore participation.
Link to occupational justice and how this is a framework to explore the possibilities self-directed attendant care affords.
Engaging in occupation can improve the lives of people
in vulnerable situations (Whiteford & Hocking,
2012).
Occupational justice, then, is concerned
with enabling, mediating and advocating for
environments in which all people’s opportunities
to engage in occupation are just, healthpromoting
and meaningful.
Overview of Research
The broad objective of my doctoral research is to explore the impact tht access to direct funding has on an individual’s occupational performance and engagement. As a novice researcher, I am considering the possibility of using PAR to inform my doctoral studies, which will Explore narratives of individuals with disabilities using self-managed attendant services to understand how self-directed options to attendant care foster occupational possibilities, and to consider the broader societal, economic, and socio-political contexts that shape these experiences of engagement. Acquiring new knowledge and understanding in this area will assist in redefining approaches to service delivery while documenting contemporary practices and conceptualizations of care within a program that explicitly promotes independence and autonomy: Ontario’s Direct Funding Program.
Participatory action research (PAR) is an approach to research in communities that emphasizes participation and action. It seeks to understand the world by trying to change it, collaboratively and following reflection. PAR emphasizes collective inquiry and experimentation grounded in experience and social history. Within a PAR process, “communities of inquiry and action evolve and address questions and issues that are significant for those who participate as co-researchers”.
All formulations of PAR have in common the idea that research and action must be done ‘with’ people and not ‘on’ or ‘for’ people.
Methodological Approach
To guide my research, I plan to use qualitative research methods, informed by the participant action research theoretical framework. Given the lack of theoretical or empirical knowledge on private family issues (e.g., DV) in affluent families, qualitative data collection and analysis are especially well suited for examining this hidden topic. Further, qualitative research emphasizes treating the individuals they study as experts on their own lives and experiences, which is in line with critical disability studies frameworks.
My dissertation research seeks to advance existing knowledge by using PAR to examine how affluent families and communities construct and manage their experiences with DV. The use of grounded theory ethnography fosters conceptual and theoretical connections in a specific context; therefore, my research moves beyond superficial descriptions of a setting towards a theoretical understanding. While many of the characteristics of affluent families are understandably viewed as advantages in our society, my research examines ways in which privilege, social class, and status are potentially complicated for affluent families, especially affluent women who experience DV. In keeping with feminist research, my research agenda values feminist praxis that bridges research, advocacy, and the families impacted by DV. Through participation in community and professional seminars and workshops as well as dispersing information about my researching findings to members of the community, I am able to give back to those who have helped me with my research.
I have already been in contact with Dr. Colleen McGrath (faculty in the occupational therapy department) about potentially advising my dissertation; she has voiced interest, and her guidance will be indispensable to my research. Additionally, I have begun to make connections in the Disability Studies Department at Kings, as I hope to draw on work from both the Occupational Science and Disability Studies perspectives.
Explore the impact that access to self-managed attendant care has on occupational performance and engagement. Considering the possibility of using PAR to inform my studies, I will Explore narratives of individuals with disabilities using