CCPGM’s Medically Complex Children program connects young patients and their families to healthcare resources.
By Christopher Sardelli
Whether it’s teaching families how to arrange transportation to doctor visits or tracking down an available wheelchair, Janis Patterson has become an expert at fitting puzzle pieces together.
As a primary care manager with CCPGM’s Medically Complex Pediatric program, Patterson spends her days connecting young patients and their families to a wide range of healthcare resources. For the majority of her patients, those resources help them alleviate or address a long list of chronic conditions.
“Medically complex means that a child has to have technology, such as tracheostomies, ventilators or gastrointestinal tubes to survive. Usually these patients have more than one body system that is malfunctioning and are dependent on these devices for life,” Patterson said. “Also, if the illness causes a tremendous burden on the family, it’s not just a financial issue for them, but emotional as well.”
The age range of her patients is typically 5 to 22 years old. Right now she assists 27 patients, though she hopes to one day reach as many as 50.
“Right now, I’m the only medically complex nurse doing this kind of work, which is a little challenging,” she said. “But the positive is we have a wonderful pediatric team of professionals who practice collaboratively on our patients’ behalf.”
In her role, Patterson also serves as a guide to families who may not know how to navigate the healthcare system, especially when it comes to having a medically complex child. This includes transitioning children during their teen years from a pediatrician to a general practitioner.
Also challenging for many families is learning the intricacies of the law when it comes to guardianships.
“The law doesn’t care if they can’t speak or take care of themselves. The law says they are an adult, so the process after 18 is whoever the care giver is, a parent or guardian, they need to start the legal guardianship process,” she said. “It’s a little complicated, so the family needs the support of the care manager to walk them through the process.”
Assisting Patterson in her role is maternal-child QI coordinator Andre’a Alston, who helps track referrals and statistics, while also developing process flow charts among many other duties to determine if monthly information is effective based on outcomes or results.
“I look at a lot of data from the back end. I review the amount of referrals that are being received internally,” Alston said. “I look at the parent satisfaction survey for patients and I look at how they feel with the care management and do they feel there has been any improvement with their child’s health. I also review results from provider satisfaction surveys to see which improvements are needed.”
Using PCM feedback and results, Alston gauges how the MCC program can continue to help patients.
“We look at what can we do to address challenges. A lot of patients don’t speak English, so communication is a constant barrier. So, we want to increase awareness and knowledge about the MCC program,” she said. “It’s an awesome feeling to be part of this great initiative…MCC serves as a resource to patients and parents to provide tools to advocate and navigate the healthcare system. We are a resource where we put patients back in control over their health, behavior and life.”
Though Patterson has only been with CCPGM a short time, she has already experienced one of her favorite success stories within the program. Recently, she worked with the family of a 14-year-old Cambodian girl who has cerebral palsy, among other conditions. Though the girl speaks some English, her parents speak none.
“When I started, the emphasis was on self-management and helping the patient’s family care for themselves; to empower them,” she said.
After working with the family, she realized there were two teenage siblings, both English speakers.
“It was like a detective story, trying to figure out who can help. I realized the girls were the key. I visited with just them and talked to them about how they could schedule transportation for their sister and what a big help it was to the family. I brought them instructions and wrote out the six months of appointments and sat down with the older daughter and she made all the appointments for transportation,” she said. “I asked her if she felt comfortable. She said of course, like ‘why didn’t anyone ask me before?’…Since then she’s made two transportation calls on her own. It doesn’t happen with everyone, but this was a success.”
“I really did a happy dance. Once you’ve had success, you go and review your process and see if you can apply this other situations,” she said.