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The financial toll of caregiving on special needs families

American families provide around 1.5 billion hours of unpaid at-home care to about 5.6 million special needs children each year, according to the findings of a nationwide study. This represents a substantial economic cost of an estimated $36 billion in unpaid medical care annually.

Family members assist special needs children at home with everything from feeding and tracking medication to performing physical therapy and changing bandages. These health care tasks can be time-consuming and even highly technical at times.

The study found parents and guardians provide an average of 5.1 hours of medical care to a special needs child each week. For children with conditions like cerebral palsy and muscular dystrophy, the number of hours doubles. However, those figures do not include additional time caregivers spend helping children with daily activities like bathing and dressing.

Researchers say caregiving takes a toll on the ability of parents to earn a living. Families forgo nearly $3,200 in earnings each year per child due to medical caregiving responsibilities. While home health aides are available to provide care, hiring them is often not a feasible option for many families as they can cost up to $6,400 annually per child.

Beyond financial challenges, researchers noted that caregiving responsibilities can also cause emotional stress. “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,” said Mark Schuster, general pediatrics chief at Boston Children’s Hospital and senior investigator on the study.

Schuster suggested family caregivers need to be given more training and support. The researchers and his colleagues recommended paid family leave programs, improved care coordination, more communication with the child’s medical team and home visits by clinicians as strategies to help at-home care providers of special needs children.