The high cost of home care for families with special-needs children

A large national study shows that U.S. families provide nearly $36 billion each year in uncompensated medical care at home for children who have special needs such as traumatic brain injury or muscular dystrophy. A press release from the University of Southern California says that researchers at USC, Boston Children’s Hospital and RAND Corp. appear […]

A large national study shows that U.S. families provide nearly $36 billion each year in uncompensated medical care at home for children who have special needs such as traumatic brain injury or muscular dystrophy.

A press release from the University of Southern California says that researchers at USC, Boston Children’s Hospital and RAND Corp. appear to be the first to document the volume and cost of the children’s in-home medical care.

“They found that an estimated 5.6 million children with special health care needs receive 5.1 hours of weekly medical care at home. In many cases, depending on their condition, children receive much more. While home care is beneficial for the children, it comes at great cost to family members or guardians,” the press release reads. “Many parents and guardians are of limited means and would struggle to afford a professional caregiver, which would cost an estimated $6,400 a year per child, the study found. Even an unskilled professional to assist with care would cost them $2,100 a year.”

Although advances in care have enabled families to take on medical tasks such as changing feeding tubes or providing physical therapy at home, the families do not receive reimbursement or pay for the hours they spend caring for the children. The value and cost of this care was unknown until now.

“The financial burden of caring for children with special medical conditions can weigh heavily on families. Their efforts are time-intensive. Many miss work to care for their children. Collectively, the families lose more than $17 billion in income each year, the researchers determined,” the press release reads. “For the study, the researchers analyzed data collected in the 2009-10 National Survey of Children with Special Health Care Needs. The survey results were based on telephone interviews with a sample of 40,242 parents and guardians of children with special needs.”

About 11 million U.S. children have special health needs. Half of them receive at least 5.1 hours per week in medical care at home.

Care is much more time-intensive for certain conditions. The researchers found that 12 percent of the children receive more than 21 hours per week of care – largely for conditions such as muscular dystrophy, cerebral palsy, traumatic brain injury or concussion.

“The researchers estimated the value of their in-home care by calculating how much a family would spend to hire a caregiver. They based their estimates for lost earnings on the caregivers’ wages,” the release reads. “For every child with special health needs, family caregivers forego an estimated $3,200 in earnings each year.”

The families of these children do not just lose potential earnings or compensation, the researchers noted. … Out-of-pocket health care costs for a special health-needs child are three times more expensive than the out-of-pocket costs for children without any special conditions.