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’t know what care at home could look like for a child with complex medical care needs. I didn’t even know it was an option. My husband and I were making decisions based on the information that was presented to us. I wasn’t an advocate. I didn’t 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’t actually have any good options. On the one hand, the facility felt less alien than the NICU. On the other hand, it didn’t feel like home either — 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.

The root cause of the problem was that his basic human and developmental needs weren’t being met. That problem couldn’t 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’t anything in his stomach to throw up. That was the kind of solution that institutional care could provide.

Read the full article about children with medical needs by Jennifer Mclelland at YES! Magazine.