The High Cost of Home Care for Children With Special Healthcare Needs

Caring at home for children with special healthcare needs brings high costs to families. A study by researchers at the University of Southern California, Boston Children’s Hospital, and RAND Corp., placed the uncompensated medical cost at nearly $36 billion annually. The research was published in Pediatrics.

The researchers found that an estimated 5.6 million children with special healthcare needs, such as rare diseases like muscular dystrophy and cystic fibrosis, need at least 5 hours of medical care at home each week. This care is of great benefit to the children, but is costly to family members and guardians.

“Children with chronic health conditions require a significant amount of care, and hiring a home health aide can be prohibitively expensive for a family,” lead author John Romley, an economist at the USC Leonard D. Schaeffer Center for Health Policy and Economics, said in a statement. “To maintain their child’s care, families often incur financial and emotional stress from reduced earnings.”

Professional caregivers can cost an estimated $6400 a year per child, and an unskilled professional costs $2100 a year, according to the study. Children with special health needs who are most likely to receive the greatest amount of family care at home are age 5 or younger, Hispanic, below the federal poverty level, and had severe conditions/problems. Their parents or guardians had not finished high school and the family had both public and private insurance.

The data used in the study was collected in the 2009-2010 National Survey of Children with Special Health Care Needs. Overall, 11 million children in the United States have special health needs. Based on the data of the survey, the 5 conditions that require the most average hours of at-home care each week are: cerebral palsy (14.4 hours), muscular dystrophy (13.8 hours), cystic fibrosis (12.9 hours), traumatic brain injury or concussion (11.9 hours), intellectual disability (11.2 hours), and epilepsy or seizure (10.2 hours).

“Parents want to do everything they can for their children, but it can be a real challenge to juggle their ill child, their other children, and sometimes their job,” says Mark Schuster, chief of General Pediatrics at Boston Children’s Hospital and senior investigator of the study. “If parents did not provide this care at home, children would need to stay in the hospital longer, professionals would need to come to the home, or children might not get the care that their physicians prescribe.”

Families can now take on tasks like changing feeding tubes or providing physical therapy at home, but they are not reimbursed for these hours. Parents or guardians may miss work to care for their children, and the researchers determined that these families collectively lose more than $17 billion in income every year. For every child with special needs, families who care for the children forego approximately $3200 in earnings every year. The researchers reached this number by calculating how much a family would spend to hire a caregiver and based estimates for lost earnings on the caregivers’ wages.

In addition, caregivers can suffer more than just lost earnings. People who care for a child with cerebral palsy suffer psychological distress, cognitive issues, and emotional problems according to the researchers.

“We need to do a better job of training family caregivers in how to take care of their children at home, and we need better supports for them,” said Schuster.