In 1999, the EMSC Program created the Family Advisory Network (FAN) to facilitate the inclusion of family representatives in state EMSC programs. Today, the FAN membership includes family representatives from most states and U.S. territories.
A FAN advocates for all children and members contribute to their state program activities in numerous ways, including, but not limited to: serving as members, chairs, and co-chairs of their state EMSC advisory committee; coordinating special community outreach projects; assisting with the development and implementation of EMSC policy objectives; and helping to plan, present, and promote educational offerings within their state.
Meet Melissa, Minnesota’s FAN
Melissa Winger is Minnesota’s FAN and has been advocating for all children since she became a mom but officially as a FAN in 2012. She is inspired and passionate about EMSC initiatives because of her son Devin, who is now 24. Devin was born with complex medical and medical and developmental disabilities stemming from a rare chromosome 4q deletion. As a young parent, she learned so much about the true value of patient and family centered care, which can shape a variety of outcomes, including improved access to care, communicating vital information, and overall emotional and physical well-being for the child and family.
Melissa is the pioneer behind the resource, EMS Communication Aid. This resource was designed for children who are non-verbal, young children or ESL children through a series of pictures on cards. These cards and adaptations of the cards are now found in ambulances throughout the country.
Recently, Melissa wrote about the challenges of what life has been like this past year for some families. Everyone knows about the direct impact of COVID-19, but this highlights some of the pandemic’s more indirect effects, including delayed and fragmented care for individuals with chronic medical needs.
“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.”
You can become an advocate for children! Simply contact Kjelsey for more information on all things EMSC Family Advisory Network (FAN) activities statewide and throughout the nation.
Learn more about FAN with this 14 mins video ~ Helping to Improve Pediatric Emergency Care