Examining Family Quality of Life Within the Context of a Participant‐Directed ASD Funding Program in British Columbia, Canada
Bibliographic record
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.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.006 | 0.316 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.000 | 0.002 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.001 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".