Everything Under The Sun: Meeting Life's Challenges

Tristan Schilling in a hallway of York College.

Every so often, you can find a remarkable individual who, despite physical challenges, makes a mark in the world, just by living his life. That is true of Tristan Schilling, who has cerebral palsy that presents mobility challenges and also has a rare genetic illness that prevents him from feeling pain. In addition, his eyes don't produce tears and his body has difficulty regulating body temperature. He has spent his entire life in a wheelchair.

Tristan's physical condition has previously been in the news, when he was a lot younger. At age 5, he was in danger of losing his vision, so his parents launched a campaign to raise money so he could go to Rome for a special procedure only available there that ended up saving his eyesight. Later, as Mr. Schilling reported, "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."

Today, Tristan says, "I'm in college, and that's always been a dream of mine. I've driven by York College as a kid so many times and I never knew that they would have so much to offer." However, unlike physically-abled college students, he requires a lot of support from caregivers. But his health care insurance provider, Gateway Health, was not on board with providing those services, which can be dauntingly expensive.

So, that prompted his mother to visit state Senator Scott Wagner. Sen. Wagner said, "They explained everything to me and showed me their documentation. 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."

That's when Sen. Wagner contacted Gateway President and CEO Patricia Darnley, Chief Clinical Administrative Officer Marie Glancy, and Legislative Director Tracy Lawless, and the group met in Harrisburg. Mr. Schilling continues, "I told them straightforward, '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.' We were able to get straight to the point and I got what I needed."

By November, the appeals with Gateway were resolved and they started providing 24-hour services, replacing the temporary services that he had been utilizing. Tristan does have some hopes regarding his recent experiences, "I think I made a lot of heads turn. 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."

What Tristan's situation shows is that in order to live in mainstream society, people who have physical challenges, and their family members, have to be able to function as their own advocates. Not only do you have to figure out how utilize assistive devices and services, but you also have to fight through a mountain of red tape that prevents you from reaching those services. It sometimes takes a determined pioneer to show the way to a solution.

On that special day when Tristan scored a touchdown for his team.

That determination may have added some new career possibilities into Tristan's future. As he reported, "My advisor suggested I change my major to public relations advocacy. I'm thinking about it."