Barriers and inequalities faced by caregivers of children and young adults with developmental disabilities in accessing and managing direct payment funding: Key recommendations

Luz Maria Vazquez; Ron Wray; Nazilla Khanlou

doi:10.25071/1929-8471.178

Authors

Luz Maria Vazquez York University, Toronto, Canada https://orcid.org/0009-0000-3156-1415
Ron Wray Consultant, Ottawa, Canada
Nazilla Khanlou York University, Toronto, Canada https://orcid.org/0000-0001-7176-8875

DOI:

https://doi.org/10.25071/1929-8471.178

Abstract

Background: People with developmental disabilities experience systemic barriers in accessing and utilizing disability funding. Direct funding aims at enhancing the quality of life of persons with developmental disabilities. It relocates the choice and control over services from agencies and service providers to individuals with developmental disabilities or their families. We explore the impacts of this shift on the family caregivers of persons with developmental disabilities in relation to access, management and utilization. Methods: The paper draws on a larger qualitative community-based research project with 86 participants that explored the impacts of direct payment for young adults with developmental disabilities in Ontario, Canada, and their caregivers. Specifically, we report findings from 45 family caregivers. Results: Direct funding allows individuals to select what services they wish to receive, and to maximize the degree of control they have on service delivery. However, extensive inclusion and exclusion requirements of what constitutes acceptable expenditures, lengthy paperwork and record keeping, and time limitations for use, can be challenging for caregivers. Direct funding requires human capital, knowledge, resourcefulness, time, skills and experience of the caregivers to navigate across systems and communicate with multiple stakeholders. Caregivers report stress and anxiety in their (new) role as the administrators of complex choices and decision-making processes. Discussion and Conclusion: The success of direct funding is contingent on human capital attributes of its users and/or caregivers managing the funds, and flexibility in administration expectations that applies a person-centred lens. Families with developmental disabilities who experience the greatest burden and inequalities in care are often those with the least time and resources to manage and administer direct funding in light of extensive contractual and complex funding requirements.

Keywords: Direct payment, personal budgets, person-centred, developmental disabilities, caregivers.

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