Teaching Medically Complex Families to Weather the Storm
Summary
- Medically complex families from Miami-Dade County gathered on the eve of hurricane season at the Christine E. Lynn Rehab Center to answer questions about safety during emergencies.
- The Miller School of Medicine’s Global Institute helped organize the event so families have the necessary knowledge and supplies going into hurricane season in South Florida.
- The Global Institute assists international humanitarian disaster relief projects.
Hurricane season brings a whole new set of concerns for parents with medically complex children. When a storm leaves the street littered with debris and your child uses a wheelchair, how do you navigate? When a storm knocks out the power and your child is dependent on electricity for a CPAP machine, where do you turn?
Medically complex families from across Miami-Dade County gathered on the eve of hurricane season at the Christine E. Lynn Rehab Center for answers to these questions and more from an array of experts. In addition to the flashlights and crayons typically handed out at hurricane-readiness events, families also left with medication lockboxes, medical forms and other free supplies tailored to their unique circumstances.
Among them was Bernadett Horvath and daughter, Aballa, 10. She remembers that when Hurricane Irma hit, her daughter, who uses a wheelchair, already was hospitalized so she didn’t have to worry about logistics.
“This time around, Aballa is older, bigger and heavier,” she said. “I’m all about resources and learning so I’m here to learn, and this is great. Hurricanes are one of my biggest concerns because we don’t have a great support system in our building. Being a mom and having a child with special needs, I know this is important.”
Preparing for Hurricane Season
Creating a day of educational activities and resources on preparedness was the brainchild of Kendra Van Kirk, M.D., and Anjali Saxena, M.D., both assistant professors of clinical internal medicine at the University of Miami Miller School of Medicine. The event was hosted by the Global Institute of Community Health and Development at the Miller School, which assists humanitarian disaster relief projects and counts both doctors as leaders in the organization.
The Global Institute worked in partnership with UHealth/Jackson Holtz Children’s Hospital, the nonprofit Stronger than the Storm and Golden Hearts PPEC, which provides therapeutic services to medically complex infants and children.
“We designed the event to specifically educate families with children who have complex medical needs so they’re prepared with the knowledge and supplies going into hurricane season,” Dr. Van Kirk said. “We have pediatricians, experts in child psychology and disaster management and other community members who work with our patients every day.”
Dr. Saxena, who sees medically complex patients in her clinic, was motivated by both by her work with children in the Bahamas impacted by Hurricane Dorian and by the story of a son with cerebral palsy and his disabled father who died in the California wildfires after mobility restrictions prevented them from evacuating in time.
“I understand how vulnerable this population is to disasters,” Dr. Saxena said. “There are a lot of resources available, so we wanted to find a way to consolidate them in one room and get as many people informed as possible.”
Medically Complex Patients and Emergency Evacuation
Families rotated through stations, each with its own purpose. Representatives from the county’s Emergency Evacuation Assistance Program were on hand to register medically vulnerable families for help evacuating in an emergency.
“They will physically assist with your evacuation and take you to a shelter that is appropriate for your medical needs,” Dr. Saxena said. “Not everyone knows about this so we want parents to start the application process now so they are ready for the peak season.”
At the medical readiness table, experts walked parents through comprehensive medical forms, ID cards and medication lists for their children so that in an emergency, responders will have easy access to that information. A representative from poison control demonstrated the importance of keeping pills out of children’s reach while dealing with the stressors of an emergency.
Across the room, psychologists focused on how parents can talk to their children about hurricanes and manage stress. Nearby, doctors handed out waterproof supply bags and detailed supply lists for specific situations, like people who are dialysis dependent, have a tracheostomy or depend on feeds through a tube or IV. For those with intellectual challenges or autism, parents learned how to detail their medical information, explain behavioral triggers and pack supply bags that focus on comfort and soothing items. A visit from Burnie excited kids and a teepee with stuffed animals and books provided a quiet place to relax. Outside, children got their faces painted, explored a fire truck and enjoyed cotton candy.
“How are we going to be safe?”
The event marked the launch of a broader campaign to bring these resources to children with medically complex conditions and their families throughout the summer. Soon, those who couldn’t make it to the first event of its kind will be able to access these resources at UHealth clinics, PPECs or other community sites. They will also be developing an online series to reach busy parents and children who may need to stay at home.
Jaharia Mitchellhaynes brought her son Tavalas, 4, who is autistic and has a developmental delay. Grateful for the opportunity to learn from experts and stock up on supplies, she explained her concerns.
“How are we going to be safe and what should we do to prepare?” Mitchellhaynes asked. “He’s on a CPAP machine, so how am I going to keep him with good air so he doesn’t stop breathing? I haven’t been through a hurricane with him before.”
Nancy Jimenez also was overcome with gratitude. She and her daughter, Abigail Castro Jimenez, 9, left with not only new emergency plans in place but a bag filled with supplies like the medicine locker and children’s book, Henry and the Hurricane.
“You prepare but you’re never prepared 100 percent, so this is helpful,” she said.
Tags: disaster response, Dr. Anjali Saxena, Dr. Kendra Van Kirk, Global Institute for Community Health and Development