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New challenges lead York College freshman to advocacy

Jessica Schladebeck
505-5438/@JessDispatch

Tristan Schilling is used to getting noticed.

York College student and disability rights advocate Tristan Schilling is shown during an interview in Campbell Hall at York College in York, Pa. on Wednesday, Dec. 2, 2015. After meeting with York Senator Scott Wagner,  a trip to Harrisburg to meet with Gateway executives, and more than eight years of work, Schilling was officially approved, in November, for the 24-hour care that his health conditions require. (Dawn J. Sagert - The York Dispatch)

"People know me," the York College freshman said matter-of-factly, a grin on his face.

Schilling, a recent Dallastown Area High School graduate, has cerebral palsy and a rare condition that does not allow him to feel pain. Among other conditions, Schilling's eyes don't tear correctly and his body has trouble regulating temperature. With limited mobility from the waist down, and limited use of his arms and hands, he has used a wheelchair his whole life.

In 2001, his parents publicized their son's conditions with the hope of generating community support. Schilling, then 5 years old, was at risk of losing his vision, and his family was looking to raise funds to travel to Rome so he could undergo an experimental treatment.

"There was story about it in the newspaper," Shilling said of the medical procedure that saved his sight. "And I was in the news again when I scored a touchdown before one of our football games. So yeah, my name has come up a lot."

A life-long lover of football, Schilling began attending his high school team's football practices, and during their 2012 homecoming game was given the chance to take to the field.

Schilling still keeps up with Dallastown football and roots for the New York Giants, but York College doesn't have a football team.

"They have a shirt here that says 'York College Football: Undefeated since 1787," he said. "It's pretty funny. Being a football buff, I know football didn't even really get started until the late 1800s."

And Schilling is still getting noticed, only now, it's by government officials and major healthcare executives.

College: "I'm in college, and that's always been a dream of mine," Schilling said. "I've driven by York College as a kid so many times and I never knew that they would have so much offer."

But attending college presented Schilling with a new set of challenges that would require 24-hour care and an ever-present personal care assistant.

York College student and disability rights advocate Tristan Schilling, left, is followed by Wesley Frey, LPN., right, as they navigate the halls of Campbell Hall at York College in York, Pa. on Wednesday, Dec. 2, 2015. After meeting with York Senator Scott Wagner,  a trip to Harrisburg to meet with Gateway executives, and more than eight years of work, Schilling was officially approved, in November, for the 24-hour care that his health conditions require. (Dawn J. Sagert - The York Dispatch)

Gateway Health, Schilling's medical provider "was not supplying the care I needed," Schilling said. "Since I'm getting older and I want to live (on campus) one day and live an independent life, full-time care is necessary."

After receiving countless denial letters from their provider, Schilling and his mother paid a visit to state Sen. Scott Wagner in his York office.

"We just thought enough was enough and decided to go straight to the people who know what to do," Schilling said.

Wagner was happy to facilitate a meeting.

"They explained everything to me and showed me their documentation," Wagner said. "What it came down to was round-the-clock care vs. limited care. (Gateway's) interpretation of his needs resulted in him receiving limited care, but paperwork doesn't always paint a full picture."

So Wagner called three Gateway Health executives in September for a sit-down. President and CEO Patricia Darnley, Chief Clinical Administrative Officer Marie Glancy and Legislative Director Tracy Lawless met with Wagner and Schilling in Harrisburg to sort things out.

"I told them straight forward, 'I think it's wrong that you guys aren't allowing my needs to be met, this is what you're supposed to do, you're supposed to be able to provide for people,'" Schilling said. "We were able to get straight to the point and I got what I needed."

At the beginning of November, the temporary services Schilling had been granted while his family appealed the denials shifted to 24-hour care under Gateway Health.

Schilling felt if the company had sent a team to him in person to assess his needs, everything would've been easier.

"We had to jump through a lot of hoops," he said.

Change: Schilling said he hopes his presence in Harrisburg will inspire change for others who are lacking the care they need.

"I think I made a lot of heads turn," he said. "My biggest wish coming out of this is that these companies start doing what they're supposed to and I think government should help them, but I don't think me, alone, can fix everything. There's just a lot of gray area."

Schilling said he discovered a new talent throughout the process.

"Overall, the experience of going to Harrisburg was quite awesome," he said. "I feel like I was meant to speak to politicians and companies, just to say things like, 'You have a job to do.'"

He's even considering a change in major.

"My advisor suggested I change my major to public relations advocacy," Schilling said. "I'm thinking about it."

Looking ahead:"I actually don't know what I want my career to be," he said.

For now, he's enjoying college life while he figures it out.

"I love the improv group," Schilling said. It's like 'Whose Line is it Anyway?' It's like coming up with stuff off the top of your head. It's amazing what some of the kids can come up with, and it's a nice way to de-stress after a long week of classes."

He's also found a hobby in film production.

"I'm not sure that's the direction my life is going," he said of movie-making. "I like to edit videos. I used to watch YouTube a lot and thought 'hey maybe I should try that.' It took me a while to decide what kind of movies I wanted to make, but I decided I'm just going to put my imagination out there."

Schilling said he's looking for a career that combines all his talents.

"I'm good at three things: having an active imagination, good advocacy skills and football, and I'm looking for something that combines all three," he said. "I don't want to be stuck doing just one thing all the time, it gets boring."

And Schilling said, in spite of the challenges he faces as someone with several health conditions, he does not feel limited.

"I move around a lot and I'm very active," he said. "That's the thing, even though I'm handicapped I'm able to do pretty much anything ... I don't see myself as handicapped, I see myself as handy and able."

— Reach Jessica Schladebeck at jschladebeck@yorkdispatch.com.