Addressing the Aging Out Crisis: Part II

Elizabeth Seton Hospital in Yonkers has been a home for kids with complex medical conditions for over 30 years. The residential center has given them a chance to not only survive, but to thrive and pursue a full life.

In the first part of this two-part series, WFUV’s Nicoleta Papavasilakis walked us through the one-of-a-kind care provided at Elizabeth Seton Hospital and how they are addressing the problem these children face when they age out of the pediatric system, which is a national concern.

In Part II, Nicoleta sits down with the hospital’s CEO, Pat Tursi, and international spokesperson Stephanie Gabaud. They share the work that Elizabeth Seton is doing to take care of kids in New York. [Listen in the player above]

Reported by: Nicoleta Papavasilakis
Adapted for Print by: Caroline Ealy

Stephanie Gabaud moved to Elizabeth Seton Children’s Hospital when she was a baby. Immediately, she and Pat Tursi bonded. Tursi is the CEO of Elizabeth Seton Children’s Hospital. “I met Pat when I was two years old,” Gabaud said. “That's how she became my princess,” Tursi responded.

Tursi watched Gaubaud grow up and together they watched the hospital evolve. Part of that evolution has been scientific advances that have allowed more children to outlive the life expectancies of their childhood illnesses.

“When I first came we used to not see that and it was always so very sad,” Tursi explained. “Now we have this wonderful gift where our children are maturing and transitioning into young adulthood.” With this gift comes a set of challenges. Once children grow out of the pediatric system, they have nowhere to go. Their only choice is to move out of the childcare facilities that have cared for them and into geriatric facilities. When Gabaud turned 20, the fear of leaving her home started to set in.

“I was afraid I would end up in a nursing home. It doesn't really help young adults like us and like me and my friends,” Gabaud said.

Right now, there are no medical centers geared towards young adults. According to Tursi, geriatric facilities are not suited to the needs of teenagers and young adults. All across the United States, healthcare providers and advocates refer to this as the “aging out crisis.”

“Adult practitioners have never experienced these childhood diseases because the kids don't live that long,” Tursi explained. “Second, I think that the nursing homes themselves aren't really equipped with the funding and the support and the resources.”

For Tursi, the process of discharging kids was always controversial for her. “How can you look a parent in the eye and say ok, you know, we’ve cared for your child for, you know, in many instances it's their lifetime, 21 years,” Tursi said. “And now you’re on your own. That fear for parents was so agonizing.”

A third of young adults that were forced into the senior facility did not survive past the first year of living there. Tursi decided that enough was enough. “I can vividly remember being at a memorial for one of our young adults who passed and I spoke to his mom and the staff and we committed that we’re just never going to do it again,” Tursi recalled.

Tursi has kept that promise. There are now 25 young adults, including Gabaud, living at the children’s hospital. Now, Tursi and Gabaud are working to build the nation’s first young adult care facility.

The new center has required financial support, the support of patients and families alike and most importantly – time. “We really worked hard to get the word out and get people to rally behind this,” Tursi said. Gabaud was instrumental in moving mountains to make the new facility a reality. As the international spokesperson, Gabaud is the voice of Elizabeth Seton’s kids. It’s a role she takes very seriously. “Because she’s able to express what some of our children are only able to express through facial expressions, sort of gestures, and communications through communication devices,” Tursi explained.

When the facility is complete in 2024, it will house almost 100 young adults. The facility will also collect data in order to replicate similar care centers throughout the state. For Tursi, this is money well spent. For Gabaud, it’s a weight off her shoulders. “My whole anxiety has been taken away. It's just a blessing and a miracle to be here and to be healthy,” Gabaud said. --