The arrival of a child into a religious community usually sets off a flurry of activity. Someone usually organizes a meal delivery. A pastor might visit the hospital. Older parents often reach out with words of advice to the younger, sleep-deprived new parents. But when that child is born with a severe or chronic medical condition, families need more than the church can give, said Matt Steinhauer, a retired minister with the Evangelical Lutheran Church in America, former insurance broker, and the parent of a son with Down syndrome.
“There are families who need very specific financial and physical help,” Steinhauer said. “But they are left on their own for the most part.”
Researchers use different criteria to define medical complexity, but most agree the term applies to “medical fragility and intensive care needs that are not easily met by existing health care models,” a description used by several researchers in a study in Pediatrics, the official journal of the American Academy of Pediatrics.
The study says the number of children with medical complexities is likely increasing due to a variety of factors, such as medical advances that allow children with severe health conditions or illnesses to survive beyond infancy. One study cited the U.S growth rate of children with chronic medical complexity as increasing at about 5 percent per year, higher than the growth of the childhood population over all.
But despite the advances in medical technology that allow children to live with medical complexities, the U.S. health care system isn’t ready to receive them, forcing parents to join what a team of researchers termed the “shadow health care system” in the U.S. “Because children are unable to care for themselves, their parents are expected to provide a range of health care services without which the current health care system for children could not function,” the researchers wrote in 2011.
Practically, this means catheterizing and changing colostomy bags long after other parents have stopped changing diapers. It means learning full orthopedic therapy routines instead of relaxing during tummy time. For every one wellness check or vaccination visit that take parents away from work, children with medical complexities have dozens.
“Parents become expert caregivers, responsible for the complex, day-to-day care of their child. Parents also fill gaps in the fragmented and uncoordinated healthcare system, functioning as case managers, medical record keepers, and patient advocates,” write Joanna Thomson and her collaborating doctors in the Journal of Pediatrics.
The social and emotional demands on parents are staggering, Thomson and her colleagues reported. Often one family member will quit their job because of their child’s health. Grief, fear, and anxiety over their child’s health and suffering are common. Parents act as advocates in medical and educational settings, as well as in public, and regularly run into roadblocks and red tape. The stress can cause marital strain, according to a 2022 study in Clinical Pediatrics — though researchers suggest the conventional wisdom of high divorce rates for couples who have a disabled child may be overstated.
Andrew and Rachel Wilson wrote about the spiritual and emotional journey of being parents to children with disabilities in their book, The Life We Never Expected. Rachel advises churches and supporting communities focus on practical service and willingness to let things be difficult.
“Particularly within the church context, we can feel the desperate need to put a positive spin on things,” she writes. For an exhausted, grieving parent, that’s too much pressure, she writes.
She also recommends creating space for parents to do things without their children: offering one-on-one care for the kids and creating flexible events where the children can also participate in a way that corresponds to their needs and abilities. They may not be able to eat what everyone else is eating, stay for the duration of a long event, or participate in rough games, but with thoughtfulness and compassion, children with medical complexities can be included in ways that keep the entire family from being isolated.
Then there’s the money. A 2020 George Washington University study found that across publicly and privately insured patients with cystic fibrosis, the median out-of-pocket expenses were over $8,000 per year. A 2019 claims analysis found that annual Medicaid expenses were 15 times higher for children with cerebral palsy than for the average child on Medicaid.
The regular costs of medications and therapies are beyond what most churches take on, but some churches do help with one-time costs. Many medically complex children do have to have at least one surgery and most make trips to the emergency room at some point.
Churches have been active in relieving medical debt, said Allison Sesso, president and CEO of RIP Medical Debt, which buys and forgives medical debt for pennies on the dollar. Faith-based organizations have launched over 860 debt relief campaigns with the nonprofit, making up around 10 percent of the organization’s $10 billion in debt relief for nearly 7 million families.
“Not only that,” Sesso told Sojourners. “A lot of churches take the opportunity to talk about the issue of medical debt.”
Addressing the health care system that generates medical debt is where Steinhauer suggests the church can do the most good.
Churches can help families directly, Steinhauer said, with debt relief, counseling funds, trained volunteers who offer anything from babysitting to meals and inclusive community. Besides tangible support, these efforts can also help a family feel less isolated and relieve some of the acute stressors and costs of medical emergencies.
But, as Steinhauer pointed out, the average church is not a well-resourced megachurch with benevolence funds and volunteers to spare. In 2020 Lifeway Research surveyed churches and found that 7 out of 10 had fewer than 100 people in attendance most Sundays. Even if they make it their priority, Steinhauer said, churches like the ones he served in could not fully meet the needs of his family.
Churches have a history of charitable medical ministries — hospitals, free clinics, and medical missions — he acknowledged. Many also point to the healing ministry of Jesus as a call to lend practical help to families with medical and financial hardship. Steinhauer doesn’t diminish that; in fact, when their son became an adult, aging out of public-school programs, Steinhauer and his wife helped start a day program at First Baptist Church Hendersonville — not the church where he was minister — a large church in the Nashville metro area that had the resources to bring on trained staff, maintain certifications, and keep volunteer roles filled. It’s given them some breathing room and provided social experiences for their son that they could not. But even if every church that could, did have such a program, he said, it still couldn’t cover every medical need or every financial hardship.
"To put this on churches as providing direct care and assistance, be it financial, time, or something else, is not unreasonable, but it is not going to answer the need,” he said.
That’s why he says churches also need to consider their role in shaping a society that supports children with medical complexities.
Medical advancement has made so much possible, he said, from life-saving procedures to therapies that can increase independence and reduce the pain of people with medical complexities. Medically trained home-assistance and access to high-quality care can help parents catch their breath and take care of themselves and their other children. But the existence of such services does not guarantee access to them. The church may not be able to meet every need, but it can be about removing barriers between those who need medical care, and those who can give it.
Churches can organize and advocate, coordinating with other congregations and national networks to demand health care reform on behalf of families. Steinhauer is a constant advocate for Medicaid expansion in his home state of Tennessee, and urges other clergy to take up the cause as well. To him, it is akin to breaking a hole in the roof, like the paralyzed man’s friends did in the gospels of Mark and Luke, removing the barrier between their friend and healing.
Bekah McNeel is a freelance journalist living in San Antonio. She reports on the intersection of faith and early childhood for Sojourners.
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