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Caregiver employment changes and care coordination in families with children with autism
Journal article   Peer reviewed

Caregiver employment changes and care coordination in families with children with autism

Andrea J. Jaffe, Anne M. Roux, Kristy A. Anderson, Vijay Vasudevan, Arianna Esposito, Stuart Spielman and Jessica E. Rast
Research in Autism, v 135, 202930
Jul 2026
DOI: https://doi.org/10.1016/j.reia.2026.202930
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Abstract

Care coordination Children with special health care needs Parental employment Autism
To examine changes in employment of caregivers of children with autism and children with special health care needs (CSHCN). This study used the National Survey of Children’s Health to examine the prevalence of employment changes of caregivers, including reducing hours or stopping work and avoiding changing jobs to maintain insurance. We used multivariable logistic regression to estimate associations of care coordination with both employment outcomes. Finally, we examined differences by age and insurance type, stratified by care coordination status, to examine potential interaction of these variables in children with autism and CSHCN. Caregivers of children with autism were more likely to experience changes in their employment than CSHCN. Caregivers who did not receive needed care coordination had 2.21 times the odds of reducing hours or stopping work than those who received needed care coordination (95% CI 1.89, 2.58). Age was also associated with employment changes for caregivers of children and autism and CSHCN. For caregivers of children with autism ages 3–5 years, the rate of reduced hours or stopped working was triple for those who did not receive needed care coordination (59%) compared to those who did (21%). Caregivers may reduce employment to support their child in receiving needed care. The findings from this study demonstrate the need for further research to examine the provision of care coordination and the cost-benefit analysis of public funding for care coordination to improve caregiver employment outcomes and create more support for families with a child with autism. •Parents of children with special health care needs may need to reduce employment to provide care.•Comprehensive care coordination may help ameliorate this.•More support for families with autistic children could balance of support and employment needs.•Families with younger children may particularly benefit from care coordination.

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