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

Brittany Finlay; Krystle Wittevrongel; Dercia Materula; Michèle L Hébert; Kathleen O'Grady; Lucyna M Lach; David Nicholas; Jennifer D Zwicker

doi:10.1016/j.ridd.2022.104420

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

Res Dev Disabil. 2023 Mar:134:104420. doi: 10.1016/j.ridd.2022.104420. Epub 2023 Jan 6.

Authors

Brittany Finlay¹, Krystle Wittevrongel², Dercia Materula³, Michèle L Hébert⁴, Kathleen O'Grady⁵, Lucyna M Lach⁶, David Nicholas⁷, Jennifer D Zwicker⁸

Affiliations

¹ School of Public Policy, University of Calgary, Downtown Campus (5th floor), 906 8th Ave SW, Calgary, AB T2P 1H, Canada. Electronic address: brittany.finlay1@ucalgary.ca.
² School of Public Policy, University of Calgary, Downtown Campus (5th floor), 906 8th Ave SW, Calgary, AB T2P 1H, Canada. Electronic address: krystle.wittevrongel@ucalgary.ca.
³ School of Public Policy, University of Calgary, Downtown Campus (5th floor), 906 8th Ave SW, Calgary, AB T2P 1H, Canada. Electronic address: dercia.materula@ucalgary.ca.
⁴ School of Public Policy, University of Calgary, Downtown Campus (5th floor), 906 8th Ave SW, Calgary, AB T2P 1H, Canada; Faculty of Social Work, University of Calgary, Canada Central and Northern Alberta Region, 3-250, 10230 Jasper Avenue, Edmonton T5J 4P6, AB, Canada. Electronic address: mlheber1@ualberta.ca.
⁵ Simone de Beauvoir Institute, Concordia University, ER building, 2155 Guy St., 6th floor, Montréal H3H 2R9, QC, Canada. Electronic address: kathleen54@rogers.com.
⁶ School of Social Work, McGill University, 550 Sherbrooke Ouest, Suite 100, Tour Est, Montréal H3A 1B9, QC, Canada. Electronic address: lucy.lach@mcgill.ca.
⁷ Faculty of Social Work, University of Calgary, Canada Central and Northern Alberta Region, 3-250, 10230 Jasper Avenue, Edmonton T5J 4P6, AB, Canada. Electronic address: nicholas@ucalgary.ca.
⁸ School of Public Policy, University of Calgary, Downtown Campus (5th floor), 906 8th Ave SW, Calgary, AB T2P 1H, Canada; Faculty of Kinesiology, University of Calgary, 2500 University Drive NW, Calgary T2N 1N4, AB, Canada. Electronic address: zwicker1@ucalgary.ca.

PMID: 36621140
DOI: 10.1016/j.ridd.2022.104420

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.

MeSH terms

Adolescent
Canada
Caregivers*
Government
Humans
Parents*
Qualitative Research