Children With Complex Medical Needs Belong at Home

Children belong at home with their families. For children with complex medical needs, this is still true.

I know, because my son was institutionalized in a pediatric subacute facility for most of the first year of his life. When he was only a few weeks old, he had surgery to place a tracheostomy tube for breathing and a gastrostomy tube for feeding due to a complex craniofacial syndrome. Care of a child with a tracheostomy, especially a tiny infant, requires constant supervision and intervention to keep the breathing tube open and in place. I remember being told that the mortality rate for children with tracheostomy tubes in the first year of life was so high that the hospital had to send them to a facility for transitional care. It was presented as a place where both his medical needs and his developmental needs would be met, because it was supposed to be more homelike than the hospital.

At the time this was happening, I didn鈥檛 know what care at home could look like for a child with complex medical care needs. I didn鈥檛 even know it was an option. My husband and I were making decisions based on the information that was presented to us. I wasn鈥檛 an advocate. I didn鈥檛 know the history of disability rights and the fight for disabled people to receive care in their own homes, not nursing homes. I was just a mom, convincing myself that I had made the right choice of how to take care of my son in a situation where I didn鈥檛 actually have any good options. On the one hand, the facility felt less alien than the NICU. On the other hand, it didn鈥檛 feel like home either 鈥� it felt like a clean and well-run orphanage.

Institutionalization refers to care that is provided in a location other than home. The location can be the rehabilitation wing of an acute care hospital, a pediatric subacute facility, like where my son lived, or a specialized home for children with developmental disabilities or medical needs. In some situations, children with medically complex disabilities spend months in the Intensive Care Unit, the most expensive and least developmentally appropriate place for kids. Institutionalization is orders of magnitude more expensive than home care and developmentally harmful for children. It also disrupts the lives of parents and siblings.

When my son was born, we lived in a small rural town in Fresno County. The closest facility that met my son鈥檚 medical needs was 170 miles away in the Bay Area. California only has 10 pediatric subacute facilities, two in the Bay Area and eight in Southern California. During this time, as a mother, my heart was broken no matter where I was, because whether I was at home or at the hospital, something was always missing. Our family eventually settled into a routine. I would drive up and stay in the Bay Area Tuesday through Thursday in order to be at the facility with my son, and my husband would take our daughter to daycare. Friday through Sunday we would bring our daughter to the facility. As a toddler, she quickly learned that she was allowed to mute her brother鈥檚 pulse oximeter but not any of the other children鈥檚 machines.

When I couldn鈥檛 be at the facility, my son spent most of the day alone in his crib. If he had been at home, I could have picked him up when he cried. Picking up a crying infant is a basic human instinct because being held is a basic human need. In the facility, if I wasn鈥檛 there, he would cry alone in his crib. He would cry until he spit up whatever formula was in his stomach, then stomach acid, then intestinal bile. This eventually spiraled into total oral aversion 鈥� he vomited so much and so often that he rejected oral feeding and a pacifier, anything that touched his mouth or lips would trigger a gag reflex. This also worsened the problem of not being picked up 鈥� when the staff did have time to pick up one of the babies, they tended to avoid the one who was constantly vomiting and leaking stomach acid.

The root cause of the problem was that his basic human and developmental needs weren鈥檛 being met. That problem couldn鈥檛 be solved as long as he lived in the facility. Instead, doctors changed the way he was fed, using a system that drained his stomach to keep it empty and delivered formula directly to his small intestines at all times. With that system, he could cry and gag constantly but still gain weight because there wasn鈥檛 anything in his stomach to throw up. That was the kind of solution that institutional care could provide.

In order to bring our son home from the subacute, my husband and I had to demonstrate competence in the medical parts of his care. That part was difficult by any objective measure, but was easy compared to the second requirement. The facility also required us to find home nursing coverage 鈥� their initial requirement was that we have 16 hours a day of coverage, including overnight coverage, seven days a week. That requirement was insurmountable, but I spun my wheels for months trying to meet their demand. To bring him home it was my job to find home nurses, a supplier for his breathing machines, a pharmacy that could fill compounded and specialty prescriptions, and figure out all of his insurance and Medi-Cal paperwork. Institutional care provided all those things automatically, home care required me to be the ringmaster of the whole circus.

The facility eventually agreed to release him to home care on the condition that we find a day-shift nurse and agree to sleep in shifts for the rest of our lives. One of the most common and tragic ways that children with tracheostomies die is that an emergency happens overnight, and the exhausted parent sleeps through the alarms and doesn鈥檛 wake up in time to resolve the problem. I can still hear the doctor鈥檚 stern intonation when she told us, 鈥淵ou can never fall asleep.鈥� She was solving the problem that she perceived 鈥� kids die when their parents fall asleep. But the solution she was providing put the blame and responsibility on the people with the least amount of power in the situation. The assumption was that the system of home care wasn鈥檛 going to be functional, and the solution was for parents to simply never sleep.

When children are dependent on medical technology 鈥� like ventilators, IV nutrition, feeding pumps and home dialysis 鈥� and require round-the-clock nursing interventions, our system struggles to provide that care outside the four walls of an institution. In institutional care, the system seamlessly provides equipment, supplies, medications and care for kids with complex medical needs. By contrast, bringing medically fragile children home is a do-it-yourself project for families. Our system can do more to make the transition to home care smoother, and to make sure children have real access to care at home with their families.

Spending time in acute care hospitals may be unavoidable for these children when they receive treatments that can鈥檛 happen anywhere else. But in many situations, we could do more to allow these children to stay at home, instead of being forced to live in institutions that provide medical care. Our children and families deserve better.

This story was produced by the .

Jennifer McLelland is the California Health Report鈥檚 disability rights columnist. She also serves as the policy director for home- and community-based services at Little Lobbyists, a family-led group that advocates for and with children with complex medical needs and disabilities. She has a bachelor鈥檚 degree in public policy and management from the University of Southern California and a master鈥檚 degree in criminology from California State University, Fresno.