Jennifer McLelland, center, with her husband, Justin, and children James and Josephine. Photo courtesy of Jennifer McLelland.

As a parent of a child who depends on a ventilator to breathe, my first priority is keeping my child alive. In order for my son to live safely at home, we need reliable access to medical equipment like ventilators, oxygen saturation monitors and oxygen. We also need regular replacements of consumable items like ventilator circuits, oxygen tubes, sensors and feeding products. Alarmingly, families like mine face a constant struggle to obtain these critical, life-sustaining supplies.

California’s system for providing durable medical equipment and supplies at home is complicated and difficult to manage, even in normal times. During the COVID-19 pandemic, rationing and supply chain disruptions have made things impossible for families of children with special health care needs. I believe California needs a state oversight office for durable medical equipment to give families and patients a way to resolve problems before they cause harm. This would also allow the state to keep track of whether vulnerable residents are being appropriately supported in their homes.

Here’s how the system currently works: When a child is discharged from the hospital with a need for medical supplies at home, the family is referred to a durable medical equipment provider. These suppliers contract with private insurance companies and Medi-Cal, and are supposed to make sure children get the supplies they need. But there is limited choice in the market – most regions are served by only a few suppliers, and patients are further limited to choosing only providers that contract with their particular insurance. In many cases decisions on what medical supplies a child gets are driven by the brands and quantities that the supplier can profitably provide, and not by the patient’s actual needs. The system also lacks accountability – when suppliers fail to deliver, families don’t have anywhere to turn. In many cases, due to the rules of insurance billing, suppliers still get paid for services even when critical supplies aren’t provided.

A few years ago, my son’s ventilator humidifier broke – the humidifier is a critical piece of equipment that brings the forced air from the ventilator up to the appropriate temperature and humidity content so that it doesn’t physically damage the patient’s lungs. His medical equipment supply company didn’t have a replacement in stock and were slow to order a new one as they tried to find the cheapest option. Days turned into weeks, and my son’s breathing got worse every night. He was coughing up blood-tinged secretions every morning. I called everyone I could think of. Doctors don’t keep medical equipment on hand. The insurance company doesn’t directly provide equipment. The Medi-Cal nurse case manager, whose job it is to provide case management services to ensure safe home care, didn’t do anything other than document that he was having a problem. The problem had to be solved by me, his mom, calling every supplier in the phone book, finding one who would take the case, and then getting all new prescriptions and insurance authorizations for all his equipment.

I shudder to think about what might have happened had I not been able to so persistently advocate for my son. Navigating the supply chain was difficult for me — a college-educated, well-connected, English-fluent mom. I can only imagine how challenging it is for other California families with fewer resources.

That was before the pandemic. To care for patients with COVID, acute care hospitals have snapped up critical ventilator supplies at inflated prices. As a result, the durable medical equipment industry that serves children like my son has been unable to purchase the supplies that are needed to keep ventilator patients safe and healthy at home. A ventilator is not just the machine itself, use of a ventilator also requires a circuit – tubes that connect the machine to the patient – and other specialty items like suction catheters, filters and connectors. These items are made of fragile plastic and are not intended to last forever.  They must be replaced regularly, but some families have been forced to reuse worn out supplies because they can’t get timely replacements.

The durable medical supply industry is not at fault for the supply chain disruptions that have made it difficult to get many specialty care items. A recent recall of Abbott specialty formulas, and an ongoing shortage of Bivona pediatric tracheostomy tubes, for example, are due to manufacturing disruptions and out of the industry’s control. But when supplies become scarce and durable medical suppliers are unable to deliver critical items, families don’t have any good options on where to turn for help. Families can help each other through disability mutual aid groups online – but disabled people shouldn’t have to rely on each other for critical supplies when a multi-billion dollar health care system is supposed to be providing them. When children depend on life sustaining medical supplies and equipment, there needs to be a system of accountability for when the contracted providers  don’t provide the prescribed items.

Children and youth with special health care needs do best when they have the support and supplies they need to live at home. Institutional care costs orders-of-magnitude more and results in worse patient health. Yet, in many cases, children who can’t get the supplies they need to stay home have no choice other than to go to the emergency room in the hopes that an acute care hospital can provide the supplies that should have been shipped to them at home.

The state uses an ombudsman system to solve problems in other areas of health care. An oversight office for durable medical equipment would be a single point of contact who could step in and solve problems for families like mine and keep children with disabilities safe. The office could monitor critical supply shortages as they occur, and could work with the acute care system to help suppliers obtain items needed to keep medically fragile children at home and out of the hospital. This would ensure that Medi-Cal recipients get the replaceable products they need so they don’t have to risk infection from reusing sterile supplies. We need a state oversight office now. Our children’s lives depend on it.

Jennifer McLelland has a bachelor’s degree in public policy and management from the University of Southern California and a master’s degree in criminology from California State University, Fresno. She worked for the Fresno Police Department in patrol for eight years. She is currently a stay-at-home mother and paid caregiver through the In Home Supportive Services program.  She is active in advocating for disability rights and home- and community-based services.

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