Caregiving, inequality, parenting, disability, advocacy, qualitative research


Supports and services for children with disabilities are not distributed equitably. There are disparities in access to and quality of services for children with disabilities from low-income and ethnic minority groups. There are likely many contributors to these disparities, but one factor may be barriers to access that require parents to advocate to obtain services for their children. This qualitative study explores advocacy experiences of parents of children with disabilities (n=40) who have a high level of education and/or professional achievement. Parents described relying heavily on their professional and educational backgrounds in advocacy, and some commented upon the “advantage” they had in accessing services. In the context of an international shift in developmental services policy towards self-determination and privatization, parents and guardians will play an even larger role in decision-making about services with their dependents with disabilities. The findings of this study suggest that support and training for parents and guardians as they navigate this new policy environment is especially critical given the role of parental knowledge and skills in advocacy activities.

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