Introduction: Without a care coordination mechanism, caregivers of
neurodivergent children coordinate care across various complex systems
in addition to caregiving responsibilities. This study aimed to
understand the needs of families with neurodivergent children before
entering a care coordination program. Methods: Using a convergent
parallel design close-ended questionnaires and semi-structured
interviews captured caregiver-reported quality of life, care
integration, and resource use of 67 families. Results: Over 50% of
respondents lacked access to neurodiversity related support services
mainly due to information and coordination challenges. Caregivers were
excluded from care planning and dealt with a fragmented system.
Financial losses, social isolation, and mental health issues caused by
lack of support, negatively impacted caregiver quality of life.
Discussion: To improve quality of life outcomes for this demographic,
this study recommends that implementing a care coordination program
needs to consider the high health, educational, and social needs of
families with neurodivergent children.