A study that identified over 14,000 previously employed American families of children with special healthcare needs found that families who had to reduce work hours or leave a job in order to care for their children’s health lost an estimated average of $18,000 a year in household income in 2016-2017. Overall, foregone family employment was reported by nearly 15 percent of families who have a child with a chronic health condition, such as autism, epilepsy, cerebral palsy, or other chronic health problems, and in over 40 percent of families of a child with an intellectual disability. Findings were published in the journal Pediatrics.
“We found a strong association between increasing hours of family-provided medical care and foregone family employment, likely because the more daily healthcare a child needs, the more likely their parents are to leave the workforce or reduce work hours,” said lead author Carolyn Foster, MD, MSHS, a pediatrician at Ann & Robert H. Lurie Children’s Hospital of Chicago and Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine. “Our findings highlight the need to implement programs and policies that alleviate the economic challenges families face caring for children with chronic health conditions.”
Dr. Foster and colleagues analyzed data from the 2016-2017 National Survey of Children’s Health. US Bureau of Labor Statistics reports were used to estimate lost earnings from forgone family employment.
The study found that households of children with intellectual disability, cerebral palsy, and brain injury had the highest proportions of reported foregone family employment. Researchers also observed that foregone family employment was disproportionately high in families with children under 5 years old and in Hispanic/Latinx families.
Caregivers with forgone family employment were more likely to be younger and female, and less likely to have more than high school education, compared to caregivers who did not need to leave work to care for their children’s health. In addition, affected households were disproportionately likely to live in poverty and participate in a government assistance program.
Families affected by foregone family employment also were more likely to spend over $5,000 a year in out-of-pocket expenses for their child’s healthcare, compared to unaffected families.
“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,” said Dr. Foster. “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.”
Currently, the United States lacks a national paid family leave program, and while some private companies may provide paid family medical leave benefits, they remain primarily focused on short-term leave and not on the long-term, chronic health needs of employees’ children.While the U.S. Social Security Income (SSI) program does provide financial assistance to some families of children with special healthcare needs, SSI requires that the child have marked and severe impairment that is expected to result in death or last for no less than 12 months.
“Our results suggest that the strict SSI criteria may not reach the full scope of families whose employment is impacted by children’s health, including those whose children have milder mental and behavioral health conditions,” said Dr. Foster. “In addition to considering the expansion of paid family leave and health-related economic assistance policies, we need to improve the availability of childcare programs that serve children with neurologic, behavioral, or device-dependent needs. We also need to expand the availability of a high-quality home healthcare workforce, in efforts mitigate families’ need to leave work due to their children’s health.”
Research at Ann & Robert H. Lurie Children’s Hospital of Chicago is conducted through the Stanley Manne Children’s Research Institute. The Manne Research Institute is focused on improving child health, transforming pediatric medicine and ensuring healthier futures through the relentless pursuit of knowledge. Lurie Children’s is ranked as one of the nation’s top children’s hospitals by U.S. News & World Report. It is the pediatric training ground for Northwestern University Feinberg School of Medicine. Last year, the hospital served more than 220,000 children from 48 states and 49 countries.
