Every morning, for most of his 19 years, Jack Campbell woke up in a good mood. Jack had cerebral palsy, which prevented him from chewing, moving, speaking, and taking care of himself. He could not eat, dress, wash, or use the toilet. But according to his mother, Susan, who lived with Jack, his father, and his brother and sister in suburban Maryland, her teenage son greeted each day cheerfully.
Susan, after nearly two decades, had Jack’s morning routine down. First she changed his diaper. Every few days she’d also administer a saline enema to keep his system moving. Then she’d dress him and maneuver his 80-pound frame into his special wheelchair. They’d move into the living room, where she fed him, gave him his pills and other medications, cleaned his face, and struggled to put his coat on over his rigid limbs. Finally he was ready for the bus to take him to his day program, where he spent eight hours every weekday, before returning for his hour-long bedtime ritual each night. On weekends, one parent was always with Jack, usually at home, or sometimes they’d accompany his brother or sister to a sports practice or a game.
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. In a recent study, “Family-Provided Health Care for Children with Special Health Care Needs,” published in the journal Pediatrics in December, a group of doctors and public health experts reported their findings on the often hidden ways that care for these children affects both families and the economy as a whole.
Children with special health care needs, as the study defines them, are boys and girls under 18 who live at home. They may be living with a disease such as muscular dystrophy, cerebral palsy, cystic fibrosis, or an intellectual disability. They may have suffered a traumatic brain injury, like a concussion or other head trauma, or have chronic behavioral or emotional conditions that require extra services.
On average, a child with special health care needs receives about five hours of special health care per week, but almost 12 percent require more than 21 hours of family care per week, like Jack Campbell. Collectively, the amount of caretaking work is staggering. The authors estimate that the U.S. population of these children receive a total of 1.5 billion hours of family-provided care every year—with relatives absorbing costs that could otherwise land on public health balance sheets. 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. “These estimates suggest that the magnitude of caregiving for CSHCN [children with special health care needs] is substantial,” the study’s authors write, “and that if families were to stop or significantly reduce the amount of care they provided, major gaps in health care would be exposed.”
How have the Campbells managed? When Jack was born, they knew they’d have to change their plans. Like many women, Susan, who worked as a graphic designer, made less than her husband and in a more flexible industry. She became the primary caretaker, reducing her work hours and working from home, while her husband kept a job requiring longer, fixed hours and a commute. When Jack was young, the family had to take him for weekly medical appointments, and later, a number of complicated surgeries. When those came, all other family activities ground to a halt. After many days in the hospital, his recovery at home would take up to six weeks, with one or the other parent staying with him around the clock. With her husband at work and Susan housebound with Jack, the other children didn’t make it to after-school activities for weeks at a time.
In addition to decreasing their household earnings, out-of-pocket expenses caused by Jack’s condition put pressure on the family budget. The Campbells paid $32,000 12 years ago for a used van that was modified for Jack’s wheelchair. Jack’s only food, a liquid nutritional supplement, cost about $3,000 per year, and Susan estimates that his diapers and related products totaled close to $6,000 each year. The co-pay for Jack’s wheelchair, even with his father’s employer-based health insurance, was $2,400.
Perhaps more important than the financial toll was the emotional one, though. Caring for children like Jack demands extraordinary amounts of effort and energy, no matter how beloved the family member and how cherished his place in the family. The parents of children with special health needs are more likely to suffer from physical and mental health issues and to experience financial stress; they have higher rates of morbidity and mortality and lower quality of life. And stressed caretakers may pass that stress onto their charges, impairing the condition of the children they’re caring for.
The authors of the Pediatrics report mention a few key policies and programs that would have been helpful to the Campbells. Doctor visits in the home would have reduced stress; getting Jack and the chair up and down the ramp, and into and out of the van, turned a routine check-up into a feat of strength and dexterity. Paid family leave, if available to both parents, could have helped equalize their earning and caring obligations, especially during Jack’s long post-surgical recoveries.
The Campbells could also have used greater access to what’s known as respite care—professional-level care for a child by others, either in his or her own home or in another setting, which can give the family caregiver a much-needed break. What they had of it was crucial, Susan says, and more would have been welcome. “Finding competent care that knows what to do during a seizure, can administer meds, and can lift 80 pounds is a challenge,” she said. “People often asked if I had help. I had my family, the respite house and his school. But I sure could have used more in the home.”
Susan spoke to me at a time when she has been stepping back to consider her life with Jack in a painful new way. This spring, Jack developed pneumonia. He died in late February. At birth, Jack’s life expectancy was about 21 years. He was 19 when he died. “We almost made it there. So I would say we did OK on that. He almost made it,” Susan wrote in an email. “I feel lucky that I got to have him for 19 very smiley years! He was my sweet, sweet child. Yes, my heart hurts at times but it is also still so full of love for my little guy.”
Almost overnight, the life Susan had known for two decades changed. “Now that Jack has passed away, I am surprised by how much more time I have,” she said. She’s recognizing afresh how hard she worked. “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.”
Aakash Shah, one of the authors of the Pediatrics report and an emergency medicine physician at Robert Wood Johnson University Hospital in New Jersey, said that the Campbells are in good company. "As a doctor, I see day in and day out the hard work parents of children like Jack do. They clean and maintain medical devices and administer medical therapies in the home,” he said. “Their work represents a silent subsidy for the health care system.” Through better policy, he believes, the larger community can help support these families and make clear how valuable their work is.
The millions of families who could use this help, meanwhile, often don’t have time to make a case for themselves. They’re too busy sitting in doctor’s offices, waiting for insurance companies to pick up, making ends meet, and raising their other children. Their overwhelming challenges could be lessened through changes in both policy and medical practice, but that depends on a better understanding of the care they give, what it costs them, and how it benefits the larger economy. That understanding may come through studies like this recent one—and through the testimony of parents like Susan Campbell, who in Jack’s absence finally has the time to speak about the support his family could have used while he was alive. “Now that he is gone,” she said, “I can honor his memory by telling my story.”