Pan-Canadian caregiver experiences in accessing government disability programs: A mixed methods study.
Canadian disability money sits unused because forms are messy—streamlined guides and live coaches can flip that.
01Research in Context
What this study did
Finlay et al. (2023) asked Canadian caregivers how they get government disability help. They used surveys plus follow-up interviews. Families had youth with developmental delays.
The team wanted to know what blocks families and what helps them finish the paperwork.
What they found
Most families said the forms are too hard and the rules are unclear. Many who qualify never apply. Those who do apply often quit halfway.
Caregivers listed clearer websites, one-stop phone lines, and helper coaches as fixes.
How this fits with other research
Waldron et al. (2023) show the flip side. When U.S. Medicaid relaxed rules during COVID, families said getting help got easier. Together the papers prove red tape, not need, blocks services.
Morrison et al. (2017) warned that even small policy wording changes can kick kids off lists. Brittany’s team now shows the same thing happens in Canada.
Miltenberger et al. (2013) and Kammer et al. (2025) used parent interviews in cancer and dental care. They found the same themes: staff training and parent prep decide who gets through the door.
Why it matters
If families stall at the paperwork stage, your behavior plans can’t work—funding never arrives. Use Brittany’s list of fixes: walk parents through one form in session, print a picture guide of steps, and add a phone coach number to the behavior plan. One extra hour from you can unlock months of paid therapy.
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Join Free →Pick one family stuck in paperwork, open the provincial form on your tablet, and fill the first page together during the session.
02At a glance
03Original 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.
Research in developmental disabilities, 2023 · doi:10.1016/j.ridd.2022.104420