Family Quality of Life within the Context of a Participant-Directed ASD Funding Program

Background: The province of British Columbia (BC) has adopted a participant-directed model of autism spectrum disorder (ASD) service delivery, in which families are able to allocate funds toward the services they deem appropriate. Although placing decision-making directly in the hands of families aligns with best practices of family-centred care, research indicates that families may struggle with the lack of structure, and perceive service coordination as burdensome and overwhelming. The way in which the service system is designed in terms of funding allocation, service accessibility, and availability of guidance likely plays a critical role in how well families feel they are supporting their child with a disability, as well as in overall family wellbeing. We are currently in the dark as to how BC families perceive funding and service access, and this research shed light on their experiences.

Objectives:  The goal of this mixed-methods research was to ascertain families’ perceptions of the provincial participant-directed funding program, as well as the perceived impact on family quality of life (FQOL).

Methods: Caregivers (N=118) of individuals with ASD (aged 6-18 years; M=11.7) completed an online survey, in which they rated their satisfaction with available support, and completed the FQOL Scale (Hoffman et al., 2006). One hundred and fifteen respondents also provided qualitative comments elaborating on their satisfaction ratings. Fifteen caregivers participated in follow-up interviews, in which they elaborated on their perceptions of service delivery, highlighting the associated strengths and challenges. Qualitative data was analyzed using a modified grounded theory approach (Weston et al., 2001).

Results: Overall, online survey results indicated that only 26% of participants were ‘satisfied’ or ‘very satisfied’ with the resources and funds available to their family. Participants’ open-ended comments indicated that although they were grateful for the funding, they were frustrated by the many perceived limitations. These included long waitlists, lacking services for specific groups (e.g., adolescents), and a desire for supports geared toward parents and families (e.g., family counseling). Finally, caregivers communicated their wish that the funding system be more flexible.

Similar themes emerged within follow-up interviews. Although caregivers acknowledged their appreciation of the funding, they indicated that the provided amount was insufficient to access their desired level of support. Moreover, they described the funding system as inefficient, inflexible, and inconsistent. In particular, caregivers noted a prevailing lack of guidance, and highlighted their feelings of isolation in service navigation.

Conclusions:  This research revealed important insights into the strengths and challenges associated with the BC participant-directed funding model, as perceived by service users. We suggest that it is not enough to simply make families responsible for service coordination if they are not also armed with the necessary knowledge and guidance to make informed decisions. Without such guidance, family-directed service is not viewed as empowering, as is suggested within the family-centred philosophy, but is instead perceived as overwhelming, burdensome, and time consuming. It appears that funding services for children with ASD is necessary, though not sufficient to address the complex needs of these families. We conclude with recommendations for practice and policy.