Cost to Families Caring for Kids with MD and Other Ills? $36B Yearly in US, Study Says

Children with special healthcare needs, such as those with muscular dystrophy (MD), benefit from at-home care, but at high costs to their families. In fact, uncompensated medical care in the U.S. costs theses families up to $36 billion annually, a new comprehensive national study reported.

The study, published in the journal Pediatrics, is titled “Family-Provided Health Care for Children With Special Health Care Needs.”

Researchers at University of Southern California (USC), Boston Children’s Hospital, and the Rand Corporation co-led the study, which was the first to determine the total volume and value of the caregivers’ work.

“Children with chronic health conditions require a significant amount of care, and hiring a home health aide can be prohibitively expensive for a family,” John Romley, the study’s lead author and a USC economist, said in a university news release. “To maintain their child’s care, families often incur financial and emotional stress from reduced earnings.”

Children who were found to have the most demanding in-home care tend to be 5 years old or younger, of Hispanic ethnicity, of poor economic background, and living with conditions like MD or cystic fibrosis, which interfere with most daily activities. Most parents or guardians have a fairly low education levels, too.

Family members taking care of children with special needs are not paid or reimbursed for the hours they spend caring for their children, despite this being an intensive, time-consuming task that often pulls them away from their paid jobs.

“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,” said Mark Schuster, senior investigator of the study and chief of general pediatrics at Boston Children’s.

For this study, the research team analyzed responses from 40,242 parents and guardians of children with special healthcare needs; all had responded to the 2009/2010 National Survey of Children with Special Health Care Needs via telephone.

Researchers found that an estimated 5.6 million children receive 5.1 hours weekly of medical care at home, but many children require much more — about 12 percent receive more than 21 hours per week of care. While it certainly is beneficial for the children, family members or guardians often have limited resources and struggle to make ends meet.

Researchers estimated the value of their in-home care by calculating how much it would cost for a family to hire a professional caregiver — an estimated $6,400 per child each year, the study found. An unskilled professional would cost about $2,100 a year.

The value and cost of this care was estimated at more than $17 billion in lost income each year, overall, the study determined.

Moreover, the survey did not include the number of hours caregivers spend assisting these children with routine daily activities, like bathing or dressing.

The latest round of data collection, running through 2017, will gather information on the effects of the Affordable Care Act, which provides healthcare to many of these families.

Study findings point toward a real need to offer more help to caregivers, both financially and at the workplace, including offering employers incentives to adopt flexible work schedules, or shared-leave programs, for these caregivers.

“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,” Schuster said.