Examining Family Quality of Life Within the Context of a Participant‐Directed ASD Funding Program in British Columbia, Canada. Issue 2 (14th June 2018)

• Record Type: Journal Article
• Authors: Gardiner, Emily; Iarocci, Grace
• Is Part Of: Journal of policy and practice in intellectual disabilities. Volume 15:Issue 2(2018)
• Page Start: 110
• Page End: 123
• Publication Date: 2018-06-14
• Subjects: autism spectrum disorder -- British Columbia -- family quality of life -- participant‐directed -- service delivery; Mental retardation -- Periodicals; People with mental disabilities -- Services for -- Periodicals; Developmental disabilities -- Periodicals; Learning disabilities -- Periodicals; 362.205
• DOI: 10.1111/jppi.12237
• Languages: English
• ISSNs: 1741-1122

Abstract

Abstract: Individuals with autism spectrum disorder (ASD) will access significant supports across their lifespan, often within multiple service systems (e.g., medical, education, mental health, and social). The responsibility for service coordination most often falls to the family, and frustrations with systemic and practical barriers have significant implications for family functioning, and specifically for family quality of life (FQOL). This mixed‐methods study examined caregivers' perceptions of service access within British Columbia, a province that utilizes a participant‐directed model. Families described how their interactions with the service system impacted their FQOL, and differences across families representative of both the high and low ends of the FQOL satisfaction continuum were examined. Caregivers ( N = 118) of individuals with ASD (aged 6–18 years) reported on their satisfaction with support and FQOL, and described their service navigation experiences. Fifteen caregivers also participated in follow‐up interviews, in which they elaborated on their perceptions of service delivery, highlighting the associated strengths and challenges. Overall, only approximately one‐quarter of participants were "satisfied" or "very satisfied" with the resources and funds available to their family, and the average satisfaction rating was low. Caregivers shared their concerns about the British Columbia service context, describing the system as inflexible, complicated, and inaccessible. Participants shared how burdensome they found funding and service coordination to be, and highlighted the strain associated with the lack of available guidance. This suggests that it is not enough to simply make families responsible for service coordination if they are not also armed with the necessary knowledge and supports. The implications for policy and practice are reviewed.