Access to Advocacy for Individuals with Developmental Disabilities and Their Families
Mikaela Johnson, University of Calgary, Community Rehabilitation and Disability Studies, Calgary, Canada
Email: Mikaela Johnson
Advocacy has been and remains an essential tool in achieving and uplifting the rights of people with developmental disabilities in Canada. Advocacy on the individual level has supported individuals with developmental disabilities to live in the community, be involved in inclusive education settings, be employed, and have the opportunity to pursue normative pathways (AACL, 2005). Through my experiences at an advocacy organization, I have learned that political advocacy has worked to close institutions, change financial legislation such as AISH, challenge physician-assisted death, and advocate for provincial and federal budgets that reflect the supports needed for people with developmental disabilities.
Advocacy takes many faces, including self-advocacy, individual advocacy, family advocacy, legal advocacy, systems advocacy, and collective advocacy (McColl & Boyce, 2003). Common amongst all faces of advocacy is the essence of having a vision for the person or issue one is advocating for (AACL, 2005). A vision may be situated as the core of advocacy efforts, however, I suggest that a vision may not always be enough for an individual to exert advocacy efforts. This paper argues that while disability advocacy remains critical, external privileges exist which prevent disability advocacy and its’ benefits from being accessible to all individuals and families (Ong-Dean, Daly, & Park, 2011). The discussion reflects on this issue from a student perspective and highlights future directions for research and practice.
Keywords: Access, Advocacy, Canada, Developmental Disability, Inclusion
The role of advocacy in achieving good lives for people with developmental disabilities
While people with developmental disabilities have been advocating for themselves for a long time, disability advocacy has had a relatively short recorded history. Since the 1960’s, disability advocacy has become more prominent as the Parent Movement and self-advocates movement arose (McColl & Boyce, 2003). As time has moved forwards, advocacy has advanced from deinstitutionalization and integration to, at present, full inclusion (McColl & Boyce, 2003).
The many types of advocacy which exist suggest the multitude of areas advocacy may serve for people with developmental disabilities. Through experiences at an advocacy organization, these areas may include, but certainly exceed, advocating in the domains of community life, financial concerns, employment, immigration, education, wellbeing, and safety.
These areas of advocacy that are often needed reflect almost every area of life which may in part be due to the low expectations and discriminatory attitudes placed upon people with disabilities. Given how normalized these low expectations are, advocating for higher expectations, including employment, community living, and inclusive education, may require extensive efforts.
The problem of advocacy accessibility
Advocating for good lives for people with developmental disabilities is critical to obtain the benefits that may come along with what makes up a good life (Etmanski, 2004). To advocate for oneself or another, however, requires considerable resources (Ong-Dean et al., 2011). Time is one resource, which I have learned through my practicum, that is much needed during advocacy efforts as advocacy requires persistence and may be continuous throughout one’s life. Supporting someone through an advocacy situation, even while working with an advocate, may take time and energy as well. Understanding legal and political jargon, legislation, and systems may take additional time and require certain levels of education (Ong-Dean et al., 2011). These resources are not always in abundance for individuals and may become depleted quickly, especially for those with lower socioeconomic status (Ong-Dean et al., 2011). Even those individuals who may have the resources, may not be able to receive advocacy resources when needed, when considering my practicum experiences that have pointed to the long waitlists and insufficient resources of advocacy organizations.
Through my practicum experiences, one challenge that I have found is that to decrease the amount of advocacy needed in the first place, an extensive amount of advocacy may have to occur in order to change the status quo of how people with developmental disabilities are regarded and included in the community. The question then arises with how do we make advocacy accessible for all, knowing that it is needed to make a change in the community?
Implications for research and practice
The literature is noticeably minimal in addressing how advocacy for people with developmental disabilities and their families can become more accessible, especially for families of lower socioeconomic status and families who support a loved one with a dual diagnosis or complex needs. This is problematic given the resources that are required for advocacy and the vital roles advocacy plays in creating a good life for people with developmental disabilities (AACL, 2005). Future research should explore these issues and develop solutions specific to people with developmental disabilities, dual diagnosis, and complex needs. This may allow organizations to feel comfortable implementing solutions to tackle this challenge, extend their reach to more people, and provide a greater number of opportunities for accessible advocacy.
As a Community Rehabilitation and Disability Studies student, throughout my practicums it has become clear that advocacy is something that is needed in many areas of this field. Advocacy is not only merely needed, but is needed to become readily available and accessible to all people, not only those with privileged identities, in order to create widespread change. This could include increasing the accessibility of advocates to support individuals and families, hiring more advocates, and increasing resources to provide information and training for individuals and families.
As part of my work at my practicum, I have created a reader friendly guidebook which acts as a resource to support individuals, families, and professionals in their advocacy efforts in Alberta, Canada. This guidebook provides a substantial amount of information that would useful to advocates in the province, such as knowledge surrounding advocacy technique, funding, legislation, inclusive education, and employment to name a few. This resource allows for advocates to find clear, condensed and reader friendly information easily, thus minimizing some of the barriers that may be experienced by advocates, including time, energy, and education.
Upon graduation, I hope to contribute to work that increases both access to advocacy and decreases the need for advocacy in the first place through normalizing high expectations for the lives of people with developmental disabilities.
Ultimately, advocacy has made great impacts on the lives of people with developmental disabilities and their families. Advocacy has allowed people to fight against the low expectations and oppression placed upon them and has offered alternative realities. As a student, I have experienced the resources advocacy involves and the long waitlists that persist at advocacy organizations firsthand. My work at my practicum has allowed me to explore potential areas where advocacy access needs to increase and how families can be supported in more easily accessing advocacy knowledge and training. As time moves forward, while a decreased need for advocacy would be ideal, it may not be realistic, and I suggest there needs to be further research regarding the issues surrounding advocacy access and how access can be increased for individuals with developmental disabilities and their families.
AACL (2005). Pocket guide to advocacy. Retrieved from http://inclusionalberta.org/clientuploads/documents/2010%20PocketGuide%20to%20Advocacy.pdf
Etmanski, A. (2004). A good life: For you and your relative with a disability. Surrey, B.C.: Planned Lifetime Advocacy Network
McColl, M. & Boyce, W. (2003). Disability advocacy organizations: a descriptive framework. Disability and Rehabilitation, 25(8), 380-392.
Ong-Dean, C., Daly, A., & Park, V. (2011). Privileged advocates: disability and education policy in the USA. Policy Futures in Education, 9(3), 392-405
Author Biographical Notes
Mikaela Johnson is a fourth-year Community Rehabilitation and Disability Studies undergraduate student in the Cumming School of Medicine at the University of Calgary.
International Journal of Disability, Community &
Student Perspectives 2019