Pediatric Center Provides Unique Medical Home for Patients and Families

Dawn Johnson of Concord, Ohio, says that she “always knew” she would adopt a child with special needs. “In college, I wrote a paper about why people adopt overseas. While researching, I found Alex’s photo in a listing of kids from all the states who were in the system, and I knew.” He was 2 years old at that time and living in California. Two years later, when his adoption was finalized, he joined his new family.

Dawn has a background in medicine, having trained as an EMT paramedic, run a blood bank and worked in dentistry. Even so, she says she doesn’t think that she was comfortable at first with her son’s physical challenges. Alex, now 18 years old, has cerebral palsy, developmental delays, seizures, chronic lung disease and hypertension, and he depends on a gastrostomy tube for nutrition.

“I’m very spiritual and prayed about it,” Dawn says. “I have learned my son over the past 14 years.”

The first few years, Dawn says, she took her son to multiple specialists. When he was 6 years old, she discovered Cleveland Clinic’s Pediatric Center for Airway, Voice and Swallowing disorders (PCAVS), and it changed their lives. At the center, a patient’s needs are addressed by one multidisciplinary team that coordinates and personalizes both medical and nonmedical care.

“They are like family to me,” Dawn says. “It’s not just that they support Alex, but they support me. When I divorced and transitioned to being a single mother, his care took a village, whether at times of illness or during postop. I always say that I’ll do anything he needs me to do, but I just don’t know all I’m supposed to do – pulmonology, tracheotomy, diet, everything. You do train for these things, and California was good about teaching me to care for him, but I could never learn everything that he needs and what’s going to come our way in the future. They stay on top of that for me so that, really, all I have to worry about is raising my son and following their advice.”

Alex with his family and some PCAVS team members (left to right): Dawn Johnson (mom), Colbee Lord (brother), Alex Johnson, Annie Bannas, MSN, CNP, PCAVS Clinical Coordinator; John Carl, MD, pediatric pulmonologist and PCAVS Center Director; and Christine Arnica, MSSA, LISW, Pediatric Social Work Team Lead. Photo courtesy: Cleveland Clinic.

Annie Banas, MSN, CNP, Clinical Coordinator for PCAVS, helped establish the center in 2011 with the idea of all services being available at one site. “Our clinic is unique because it functions as both a medical and surgical home for our patients. The main pediatric teams involved are ENT, pulmonary medicine and gastroenterology. We also have social work, nutrition, speech pathology and pediatric physiatry,” she says.

The patient’s whole team meets monthly. “Alex comes once or twice a year, and my role in the background is to prepare for his visits prior to his arrival,” Annie says. “I meet with the family virtually before and after visits, and as needed for problems. I help the family navigate this complex medical system and assist with a multitude of needs, from equipment and medication issues to acute medical concerns. This allows the families in our PCAVS clinic to have an accessible point person for their child’s medical care.”

One unique aspect is that the patient’s entire team meets twice on the day a patient visits, just before and just afterward, she says. Annie conducts virtual visits with parents beforehand to address any concerns and documents these questions for the care team. “I complete my virtual visit with the families one to two weeks prior to their PCAVS visit and write a detailed synopsis outlining past medical history, parental questions and concerns, past PCAVS recommendations, and any changes that I may have made during this visit,” she says. “These notes are available to the entire caregiving team, not just PCAVS. A detailed plan of care then is sent to the family with the whole team’s recommendation.”

In 2022, Dawn and Alex were living in Pennsylvania, where they had moved to enroll him in a school. At Christmas time, Alex became seriously ill, and Dawn called her care team, who were responsive throughout the holiday. “That’s how much they love him,” she says. Based on the care he receives at PCAVS, which Dawn could not match where they lived, they moved back to Ohio.

“On March 16, 2023, he had major spine surgery at Cleveland Clinic,” she says. “The team planned his treatment in the event that complications arose. They took so much time to do that, and took so much time with me a week before surgery to calm my nerves. Every single one of them talked with me and told me that we were doing the right thing, and they all have checked on him since the surgery.”

Alex Johnson, accompanied by his brother Colbee Lord and mom Dawn Johnson, arrives for an appointment at the Pediatric Center for Airway, Voice and Swallowing Disorders (PCAVS). Photo courtesy: Cleveland Clinic.

Medical issues are “only one part of the challenge” facing parents of children with complex needs, says Christine Arnica, MSSA, LISW, Pediatric Social Work Team Lead.

“I am very passionate about my role, which is to deal with anything nonmedical and optimize patient care,” she says. “Social workers have to address the psychological, social and functional needs of the patient and their family. We provide clinical and emotional support while they try to navigate the healthcare system.”

Christine joined Cleveland Clinic in 2018, so hasn’t known Alex his whole time with PCAVS, “but typically, I am a member of the patient’s team from Day One. I like to be involved as soon as possible to build a relationship with the family and be that support for them, so if there are any needs that arise over time, I can help them.”

She says that patients often have issues with their school or the school system. “That is something I’m knowledgeable about,” Christine says. “I can provide guidance on how to resolve any barriers and can connect them with governmental resources and area organizations that help navigate school issues for children with special needs. Another resource is our medical-legal partnership with the Legal Aid Society. An attorney can work with the school on the family’s behalf.”

Christine works closely with parents, patients and the medical team. “PCAVS is one of the best coordinated teams I’ve ever worked on,” she says. “Everyone has a voice. It helps the patients get the best care possible.”

Christine and Annie agree that Dawn is an extraordinary mother. “She’s done an amazing job,” Christine says.

Dawn feels the same way about the PCAVS team. “Alex’s care is very intricate,” she says. “Everything has to work well for him to work well. My team is fantastic. They are all present for my son. On his 16th birthday in April 2022, I sent them all bundt cakes and I said, ‘I’m not sure I would still have my son without you guys.’ Really, there is no doubt in my mind.”