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Susan estimates that her husband and Jack’s siblings spent about 14 hours a week actively caring for him. She did the rest. It wasn’t easy. “I really feel for people that have children with severe disabilities,” Susan told me. “Isolation and loneliness come with the territory.”

For families like Jack’s, the time and costs of caring at home for a child with special health care needs can be daunting. But those costs are often off the radar in how we think of work in this country—even though fully 5 million American children with special needs rely on family members for daily care.

The total market value of their contribution could range from a low of $11.6 billion annually, if you calculate all that work at a minimum wage, up to a high of $35.7 billion, if you consider the replacement cost for care by a home-health aide. Meanwhile, family members who do this caretaking work give up an estimated $17.6 billion in employment income themselves.

Though their neighbors may hardly register it, these families are lowering public health costs that would, at least in part, otherwise fall to the taxpayer.

“I did what I needed to do to keep my child comfortable and happy, but I had no idea how much time I spent taking care of his everyday needs. When you have a child like Jack, your focus is his care, daily, yearly, lifelong.”

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