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

Area of Science:

• Health Services Research
• Disability Studies
• Neurodevelopmental Disorders

Background:

• Limited understanding of factors influencing low uptake of Canadian government disability programs.
• Focus on parents/caregivers of youth with neurodevelopmental disability (NDD).

Purpose of the Study:

• To explore the experiences of parents/caregivers applying for and accessing disability programs for youth with NDD in Canada.
• Identify barriers and facilitators in the program application and access process.

Main Methods:

• Mixed-methods sequential explanatory design.
• Phase 1: Online survey (N=499) collecting sociodemographic and preliminary experience data.
• Phase 2: Semi-structured interviews (N=81) for in-depth exploration of barriers and facilitators.

Main Results:

• Significant difficulties reported in applying for and accessing disability programs.
• Application process factors and family attributes significantly associated with program access.
• Identified four key barriers and three facilitators to program access.

Conclusions:

• Study findings underscore the need for policy reforms to improve disability program support for Canadian families.
• The multi-faceted journey to program access requires a comprehensive policy approach.