Family Advisory Network feature: One family’s experience with delayed and disconnected care

In the wake of COVID-19, there are many lessons to be learned. While those lessons might focus primarily on the immediate impact of COVID-19 itself, it’s important to consider the pandemic’s more indirect effects, including delayed and fragmented care for individuals with chronic medical needs.

Sadly, Melissa Winger, the Minnesota member of the Family Advisory Network (FAN), and her son experienced this gap first-hand last fall. The situation underscores the importance of telehealth—and also its limitations.

Below, Winger shares her family’s story.

When the pandemic first started, we had to react quickly to protect our most vulnerable. Policies and orders were put into place to do what is in the best interest of people who would be at the highest risk if they contracted COVID-19. This included my son, who is 25 and was born with a chromosome disorder that has affected every organ system. When the pandemic began, he had been living in a four-person group home for about a year.

Previously, I visited regularly due to his complex needs and being unable to communicate due to severe autism. The pandemic put into place rules on visitation so I was no longer able to visit. He also follows with many specialists to manage chronic medical needs and these were put on hold to reduce exposure. Virtual appointments were offered, however, I could not join these appointments because I was not on-site with my son, and technology to add a third party was not an option.

In October, the visitation rules were still in effect, and he developed an ear infection. Due to risk of exposure to COVID-19, the initial appointments were virtual. After several failed attempts at antibiotic treatment and less than optimal care due to COVID-19 restrictions, four months went by without clearing the infection. With great concern, I had to break rules and get my son to the ER. A CT scan was ordered and revealed that the infection had traveled to the skull bone and bone erosion had already begun. Major surgery was recommended to remove the infected bone.

I feel compelled to share this story so we can learn from how the pandemic caused negative health outcomes in some people, including our most vulnerable, due to delay of care or suboptimal care due to exposure risks.

Certain things need to be considered in disaster planning, such as a pandemic. We must strike a balance of benefits and risks, consider the individual’s needs and preferences, and include the family as essential caregivers. Emergency medicine providers have been faced with COVID-19 patient surges and now, unfortunately, will also be seeing the outcomes due to delaying medical care for chronic conditions that now have become emergent needs that may have been preventable.

The Emergency Medical Services for Children Innovation and Improvement Center (EIIC) thanks Winger for sharing her story in Pulse. Winger also shared this story with the Advisory Council for EIIC’s Telehealth Collaborative, which launched this January and includes teams from seven states and one U.S. territory. The goal of the collaborative is to evaluate the impact of public health crises on children and youth with special healthcare needs and children with behavioral health emergencies; assess telehealth capacities; and provide guidance and support to improve access to emergency pediatric services, particularly in rural, tribal, and territorial areas.

As part of its work, the Telehealth Collaborative recently launched a toolkit that includes resources and best practices for State Partnership programs that are working with local stakeholders to develop a telehealth program. Access the telehealth toolkit here.