Families provide billions in unpaid care to kids with special needs

Millions of U.S. children with special needs receive care from family members that would cost billions of dollars if it was instead provided by home health aides receiving minimum wage, a recent study suggests.

Researchers examined data from a nationally representative sample of about 42,000 parents and guardians of children with special needs surveyed from 2009 to 2010.

Overall, they estimate that approximately 5.6 million children with special needs receive about 1.5 billion hours a year of unpaid care from family members.

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In 2015 dollars, replacing this unpaid family-provided care with a home health aide would cost an estimated $35.7 billion, or $6,400 per child per year, the researchers report in Pediatrics.

"Although caring for a child with special health care needs can be rewarding, the time and effort families of children with special health care needs must often devote to providing health care at home has been found to potentially create financial problems, marital discord, sibling issues, problems at work, social isolation, and regular sleep disruptions," said senior study author Dr. Mark Schuster of Harvard Medical School and Boston Children's Hospital.

Parents and other adults providing this unpaid care to kids with special needs lose out on an estimated $17.6 billion or $3,200 per child each year in missed earnings, the study also found.

"It can also compromise parents' physical and mental well-being," Schuster added by email.

"However, the formal child health care system would essentially be unable to function and children's health and well-being would suffer if parents or other caregivers were not available to provide this care," Schuster said. "Children would need to stay in the hospital longer, professionals would have to come to the home, or children just wouldn't get the care their doctors say they should get."

Even if home health aides were paid only minimum wage, the care would cost an estimated $11.6 billion or $2,100 per child each year to provide, the study also found.

On average, children with special needs received 5.1 hours of family-provided home healthcare a week.

Some of the most common conditions requiring high amounts of unpaid care from parents and guardians included muscular dystrophy, cerebral palsy, cystic fibrosis, intellectual disabilities, and head or brain injuries and concussions.

Parents who spent time coordinating healthcare outside the home devoted 3.9 hours a week on average to this effort.

Children age five and under were more likely than older kids to receive family-provided home healthcare.

Family-provided care was also more common among Hispanics, poor children and kids whose parents or guardians lacked a high school degree.

In fact, the formulas estimating the cost of care may not accurately reflect the true amount of families' lost wages or the true cost of hiring a home health aide to provide care instead, the authors note.

The costs calculated in the study also don't include medical expenses caregivers may incur, even though providing unpaid care in the home is associated with increased stress and a higher risk of serious health problems, the researchers also point out.

"Hours and money don't capture the whole picture of the impact on families, including siblings, when one child needs so much attention and resources," said Carol Levine, director of the Families and Health Care Project for the United Hospital Fund in New York City.

"Many of these parental caregivers also take care of older adults," Levine, who wasn't involved in the study, added by email.