Abstract Background Individuals diagnosed with Fetal Alcohol Spectrum Disorder (FASD) have a heterogeneous range of neurodevelopmental impairments with lifelong impacts on functioning. In Canada, a FASD diagnosis is made through a multidisciplinary team assessment, using the 2015 Canadian FASD Diagnostic Guidelines. Studies show that early diagnosis and intervention reduces secondary FASD related disabilities and improves outcomes in adulthood. However, little has been published about accessibility of services and intervention for children diagnosed with FASD in Canada. Objectives The current study explores the lived experiences of caregivers in (1) undergoing a diagnostic assessment for FASD and (2) obtaining services and interventions for their child in the first two years following diagnosis. Using a qualitative approach, the study aimed to identify strengths and gaps in the system with respect to supporting Canadian children with FASD and their families. Design/Methods Seventy one (71) children were diagnosed with FASD/At Risk for FASD over a one year period at a tertiary Developmental Assessment Center in Canada. Through non-random convenience sampling, 18 caregivers (the child’s legal guardians: 1 biological parent, 9 adoptive parents, 6 family guardians and 2 social workers) consented to participate in semi-structured interviews. Interviews explored caregiver experiences with the FASD diagnostic process as well as access to supports and intervention services after diagnosis. Interviews were transcribed and analyzed using reflexive thematic analysis. Results The following overarching themes were identified: (1) The journey of raising a child with FASD is overwhelming for caregivers; (2) The assessment process was both affirming and disheartening for caregivers; (3) There are significant, multi-level, systemic barriers to accessing supports for children with FASD, and their caregivers; (4) Equity deserving caregivers and their children are particularly vulnerable to falling through the cracks of the medical, educational, and social systems. Within each theme, subthemes further highlight protective factors and specific gaps in the system in supporting children and their families with respect to early intervention, educational/vocational, community and family support. Conclusion Children newly diagnosed with FASD are falling through the cracks of our healthcare system. There are clear disparities in the accessibility of intervention and support for children with developmental differences, even with a diagnosis. Wrap around support is needed for children with FASD and their families, as soon as functional impairments are recognized. A formal funding and support system, based on function, is essential for all children with developmental differences - including children with FASD.
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