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Bloom Blog

Cutting work hours to care for a child with a chronic condition is costly

By Louise Kinross

When parents reduce work hours or leave a job to care for a child with a chronic health condition, it costs the family an average of US$18,000 a year in lost income, according to a recent American study published in Pediatrics.

"We wanted to put the amount in dollars to make it more concrete, so that the average person who doesn't deal with these challenges understands that families are losing almost 20 grand a year," says lead investigator Dr. Carolyn Foster, a pediatrician at Ann & Robert H. Lurie Children's Hospital of Chicago and Northwestern University.

The study analyzed data from the 2016-2017 National Survey of Children's Health, identifying over 14,000 previously employed parents who had children with "one or more chronic physical, developmental, behavioural, or emotional conditions" that require more health services than usual. They then used wage data from the U.S. Department of Labor to estimate the income some families lost by reducing employment.

Researchers found almost 15 per cent of families had reduced work hours or left a job in the previous year. Families of children with intellectual disability, cerebral palsy and brain injury were most likely to see employment impacted, with over 40 per cent of parents of children with intellectual disability losing income. 

"These are the children who have more functional impairment," Dr. Foster says. "They are kids who are physically or cognitively impaired, who need more help with activities of daily living and potentially are more medically complex. My guess is their parents have a harder time getting child care. If you have a kid with significant cerebral palsy, not every child care centre will take them. On the other hand, parents may feel that a child-care provider won't do an adequate job because they don't have the medical training." 

The study found a strong association between increasing hours of parent-provided medical care and foregone family employment. In a U-shaped distribution, families with lost work earnings were more likely to not spend money on a child's health care but also more likely to spend more than $5,000 per year, compared with unaffected families. "Some of those families had really good insurance, so they didn't have a ton of out-of-pocket expenses," Dr. Foster says. "But a good proportion were spending over $5,000 a year at the same time that they were losing income."

Other factors that made lost employment more likely included having children under age five, being Hispanic, being younger and female, living in poverty, participating in government assistance programs and having no more than a high school education.

The researchers recommend expanding paid family leave, daycare that is equipped to serve children with disabilities, better home-care services and paid family caregiving.

"There is a select group of patients for whom their medical needs are so great that paid caregiving makes sense," Dr. Foster says. "We have a proportion of children who are on Medicaid and who are supposed to receive in-home services. But due to workforce shortages, they're not getting it. At the same time, these families are dropping out of the workforce and incurring financial stress. Why not solve two problems at once by paying them to provide care?"

Dr. Foster says she believes there's greater political interest in caregiving issues in the United States "because of the pandemic and how it's revolutionized how society appreciates how hard it is to work and be a parent."

However, there is still push-back to better supporting families. "There's this attitude that your kid is your responsibility. We don't have paid caregiving for the same reason we don't have universal health care and preschool."

Dr. Foster said she is doing a review of home-care and paid caregiving and looking at programs offered in Australia and the United Kingdom. "One of my goals is to do a sabbatical where I can go and look at European countries and see how they're doing things."

The pediatric sector needs to partner with the adult sector on caregiving advocacy, Dr. Foster says. "A lifespan approach is the right way to talk about it. We have this problem with corporations and government looking to their next budget, rather than over the lifespan."

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