Pan-Canadian caregiver experiences in accessing government disability programs: A mixed methods study

Abstract

Background: At present, little is known about the factors that contribute to the relatively low uptake of government-funded disability programs in Canada.

Aim: Understand how parents/caregivers of Canadian youth with neurodevelopmental disability (NDD) experience the process of applying for and accessing disability programs.

Methods and procedures: This mixed methods sequential explanatory study utilized two phases: an online survey (quantitative), followed by semi-structured interviews (qualitative). The quantitative phase gathered sociodemographic information and preliminary information about participant experiences applying for and accessing programs. The qualitative phase provided greater depth by asking participants to describe barriers and facilitators to program access.

Outcomes and results: 499 participants completed the online survey and 81 participants completed an interview. Analysis of survey data revealed that many participants are not accessing disability programs and experience difficulty when applying. Regression analyses revealed that factors relating to the process of applying and applicant/family attributes are significantly associated with program access. Inductive thematic analysis of interview data revealed four barriers and three facilitators to access. Integration of findings provided an overview of the multi-faceted journey to program access.

Conclusions and implications: The results of this study highlight policy changes that are needed to ensure disability programs adequately support Canadian families.

Keywords: Canada; Caregivers; Disability programs; Mixed methods; Neurodevelopmental disability; Policy.