A significant number of caregivers of children with special needs reduce their work hours or leave jobs altogether costing their families an average of $18,000 per year in lost earnings, researchers say.

Nearly 15% of families with children who have chronic health conditions including autism, epilepsy and cerebral palsy have scaled back their participation in the workforce. That figure jumps to more than 40% in families of children with intellectual disability.

The findings come from a study published recently in the journal Pediatrics that’s based on an analysis of data from the federal government’s 2016-2017 National Survey of Children’s Health.

Researchers identified more than 14,000 families of children with special health care needs in the study that had caregivers who were previously employed. They then used wage data from the U.S. Department of Labor’s Bureau of Labor Statistics to estimate the earnings these families lost by reducing employment.

“We found a strong association between increasing hours of family-provided medical care and foregone family employment, likely because the more daily health care a child needs, the more likely their parents are to leave the workforce or reduce work hours,” said Dr. Carolyn Foster of Ann & Robert H. Lurie Children’s Hospital of Chicago and Northwestern University who led the study.

Overall, researchers found that families of children with intellectual disability, cerebral palsy and brain injury were most likely to reduce their work hours or quit jobs.

Other factors that made forgone employment more likely included having children under age 5, being Hispanic, being younger and female, living in poverty, participating in government assistance programs and having no more than a high school education. In addition, caregivers who scaled back their work commitments were more likely to spend over $5,000 per year out-of-pocket on their child’s health care costs.

Lost wages from all families who are forgoing work due to their child’s care needs could total up to $19 billion annually, the study found.

“Our results show that families who were financially most vulnerable appeared to be impacted the most by the need to leave work or reduce work hours,” Foster said. “We need policies and programs that help these families stay employed and minimize the financial challenges of having a child with a chronic health problem.”

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