Study Quantifies High Cost of Family Members Caring for Children With Special Needs

In a study entitled “Family-Provided Health Care for Children With Special Health Care Needs” published in the December journal Pediatrics, researches concluded that families of children with special needs provide billions of dollars in unpaid medical care each year, researchers say, significantly compromising their own ability to earn a living. The study investigators analyzed data from the 2009–2010 National Survey of Children with Special Health Care Needs, which included information from more than 40,000 parents or guardians of children with special health needs.  Outcomes included sociodemographic characteristics of children with special heath needs and their households, time spent by family members providing health care at home to these children, and the total economic cost of such care. Caregiving hours were assessed at (1) the cost of hiring an alternative caregiver (the “replacement cost” approach), and (2) caregiver wages (the “foregone earnings” approach).  The study results show that approximately 5.6 million children with specialhealth needs in the United States received 1.5 billion hours annually of family-provided health care. Replacement with a home health aide would have cost an estimated $35.7 billion or $6400 per child per year in 2015 dollars ($11.6 billion or $2100 per child per year at minimum wage).  The associated foregone earnings were $17.6 billion or $3200 per child per year.

All told, families provide nearly $36 billion worth of care annually, the study found. On average, kids with special needs received 5.1 hours of medical care from family members each week, but that figure grew to 11.2 hours weekly for those with intellectual disability and 14.4 hours for those with cerebral palsy.

These estimates don’t factor time families spend helping with daily activities like bathing and dressing, researchers said.

Sources for article: “Family-Provided Health Care for Children With Special Health Care Needs”, lead author John A. Romley, December 2016 Pediatrics; “Caregiving Costly for Special Needs Families” by Shaun Heasley, Disability Scoop, January , 2017