Photo courtesy of Elizabeth Seton Children’s Center
Stephanie Gabaud loves to wear pink. She wishes she had more closet space. She enjoys listening to music and swimming in the pool. She also loves movies, and one of her favorite actresses is Angela Bassett.
Oliver Hoyt is a budding photographer and artist, recently planning an exhibition of his work. He, too, loves music, as well as hanging out with his older brother, who is in a band. (In fact, both young men sport the same style of very distinguished mustache.)
Hoyt, 21, and Gabaud, 22, are in many ways just like other young adults. But both are confined to wheelchairs and require medical attention around the clock. They receive such care at the Elizabeth Seton Children’s Center in Yonkers. This large, state-of-the-art pediatric facility sits on 6.5 acres, employs a staff of nearly 730 people, and houses some 169 patients. It is the largest of nine similar facilities in New York State. The issue, however, is that it isn’t big enough, which is both good news and bad news.
First, the good news. “Thanks to advances in technology and pharmacology, children with complex medical issues are living longer,” says Pat Tursi, Elizabeth Seton’s CEO. “We have 52 children here who will turn 21 and older over the next five years.” This “wonderful” number is unprecedented and should be celebrated, she adds.
The bad news, however, is pretty bad. According to New York State law, young adults are no longer eligible for treatment at Elizabeth Seton Children’s Center. They have, as is known in the parlance of the complicated world of Medicaid and long-term care, “aged out.” Upon their 22nd birthdays, these individuals must leave pediatric centers, often resulting in transfers to geriatric nursing homes, which are not designed to meet their developmental or medical needs. In fact, as shocking as it may sound, statistics show that since 2012, some 30% of the young adults required to leave Elizabeth Seton have died within a year, Tursi says.
It is horrifying data like this that has impelled Tursi to action. She is heading up the initiative to build a 68-bed, young-adult, complex-care facility on a lot adjacent to the current center. “It is really heart-wrenching that these young adults can no longer be here,” Tursi says. “They should be able to move into a new phase of care that’s targeted just for their needs. It should be a positive rite of passage. It’s just very emotional.”
It is also very expensive. She estimates the total cost of the new facility will be some $65 million. Undaunted by the financial challenge, Tursi has begun a fundraising blitz, applying for grants and state funding and reaching out to philanthropic organizations. She and her team are currently working to meet the state’s steep equity requirement (25% of total project cost), which must accompany the Certificate of Need application they plan to submit by year’s end.
The first phase of the project, which included raising funds to hire designers and architects, has been completed, Tursi says. In fact, Gabaud was tapped to attend all of the planning meetings, acting as a spokesperson for the young men and women who would be transitioning to the new facility.
Born with spina bifida, Gabaud has lived at Elizabeth Seton for most of her life, and thanks to Tursi’s intervention, she has been granted a waiver allowing her to stay indefinitely. (While Tursi wishes waivers could be granted for all of the residents aging out of Elizabeth Seton Children’s Center, she explains that this is not a sustainable approach, as the center would then run out of the space needed to admit desperately ill babies and small children.)
Gabaud knows well the challenges facing Elizabeth Seton residents and is now proud to advocate for them. “It would not be safe [for me] to go live in a nursing home with 80-year-olds,” she points out. “That type of place can’t take care of you the same way. It’s not fair for our children: How are they going to have a quality of life if we send them to a nursing home?”
As for the design input, Gabaud requested bigger closets, to allow for the growing wardrobes of older residents. “We have nowhere to put our coats,” she adds. Plus, she recommended that the designers add as much pink as possible to the rooms, as that is her favorite color.
“It is really heart-wrenching that these young adults can no longer be here.”
— Pat Tursi, CEO, Elizabeth Seton Children’s Center
Of course, plans and priorities for this much-needed expansion changed when Westchester was slammed by COVID-19. Tursi and her team have had to focus their efforts on keeping the virus out of the Children’s Center, where it could have devastating effects. As Tursi points out, 65 of the patients at the center are on ventilators. “Fundraising in this new world has been a bit chaotic,” she says, “but our children’s health is always paramount.”
Thanks to strict and quickly adopted protocols, the children have thus far been spared from COVID, she says. While the pandemic has required Tursi’s full attention, she says it has increased her commitment to making the new young-adult building a reality. “This situation has highlighted the need for an appropriate facility for our young adults,” she says. “We want to keep them out of environments where they could be exposed to disease.”
Karin Spraggs, Oliver Hoyt’s mother, is dealing with both the pandemic and the aging-out crisis firsthand. Her son was diagnosed with a rare muscular degenerative disease at age 3. Hoyt became a part-time resident at Elizabeth Seton when his condition worsened some three years ago, ultimately placing him on a ventilator.
When COVID-19 threatened, Spraggs made the difficult decision to take her son home to New York City, worried that the center’s no-visitor policy during the pandemic, though vital, would be overly traumatic for her son. “We just needed to take him home, to be with his brother and his service dog, Rico, to weather this out,” she explains.
Further complicating issues, Hoyt turned 21 in April, entering his last year of eligibility for residence at Seton. He is now at risk for losing his bed there even sooner, due to restrictions on days allowed off-site for patients in his age group. Tursi has applied for a waiver allowing Hoyt to return as soon as all involved consider the move prudent.
Pre-pandemic, Hoyt thoroughly enjoyed a schedule of traveling home on weekends and returning to Seton for therapies and classes, including working on his photography. He takes striking, well-lit pictures of toys covered in slime, enabled by a special set-up that holds the camera for him. “They treat him like a king there; he gets much more attention than he does at home, from a lot more people,” Spraggs says with a laugh. Hoyt recently likened his time at Seton to going to college, she says. This insight reinforced what she already knew: Young adults, like her son, need a place designed specifically for their needs, both emotional and medical. “Where is the place for these awesome people to live and explore their bigger selves?” Spraggs asks. “As of now, there just isn’t one.”
Spraggs is doing her part to help change that, getting the word out about the importance of targeted, long-term care for young adults with complex medical problems. “We are riding the apex of a wave of technology and medicine that’s giving these kids longer lives, yet places like the Elizabeth Seton Children’s Center just don’t exist for their age group, and that must change,” she explains. “We need to make nurturing and safe places happen.”
Gale Ritterhoff is a regular contributor to Westchester Magazine.
