Where to Turn: Financial Support Networks for Families and Individuals with SCI/D

It’s not news that spinal cord injuries and disorders are expensive, but financial help is available—if you know where to look.

By Kelly Rouba

After listening to Bret Neylon recap the past seven months of his life, one can’t argue that it has all the makings of an episode of “Extreme Makeover: Home Edition”-except ABC wasn’t involved.

A teacher and coach in Brownsburg, Indiana, Neylon often enjoyed running as one of his favorite past times. But, at the age of 34, he gave up the activity due to a number of sports-related injuries and decided to turn to cycling instead.

“Running is hard on the body,” Neylon explained. “I couldn’t run, so biking was the next rational thing to do that was similar. I had a lot of success in competitions. I had a lot of wins, a lot of runners up.”

On June 17, however, his lucky streak ended. While heading toward the finish line at the Summer Solstice in Wilmington, Ohio, the 39-year-old shifted course so his teammate could pull ahead of him. “I was basically trying to get my teammate to win since he was following me,” Neylon said.

Just after his teammate passed by and hurried on to the finish line, another cyclist suddenly crashed in front of Neylon. With no way to avoid him, Neylon flipped on top of the cyclist and then crashed into a truck parked nearby.

“All I remember is flipping over the bike, a really harsh blow to the head, and then lying on the pavement,” Neylon said. “From everybody that I talked to, they think my helmet hit the wheel well of the truck. But, I’m not really sure. All I remember is a really harsh blow to the head,” he added.

Severely injured, Neylon was rushed to Miami Memorial Hospital in Dayton where doctors informed him that he had fractured both his C-3 and C-4 vertebrae. “That left me paralyzed from the shoulders down,” Neylon said.

Neylon spent the next two weeks in the hospital before transferring to the Shepherd Center in Georgia, where he received specialized care until he was well enough to return home in October.

Although most of Neylon’s medical expenses were covered by his insurance, community members rallied to raise funds for additional expenses, like home modifications, medical equipment, and transportation so Neylon could make the trip back to Brownsburg and resume living with his girlfriend Tracie Morris.

“Time was an issue as far as getting me the equipment that I needed when I got home,” Neylon said. “We had a lot of immediate expenses.”

Aside from needing a modified home, Neylon also required a motorized wheelchair, a Hoyer lift, a special mattress, an adapted minivan, and an array of medicine and medical supplies. As their expenses soared over several hundred thousand dollars, the couple quickly noticed a lack of financial support networks.

Not a Lot Out There

“It was pretty clear there wasn’t a whole lot of funding to be had and if there was funding, it was pretty limited,” Morris said. “There isn’t a lot out there that is available.”

Brenda Taylor, coordinator of the Travis Roy Foundation, echoed Morris’s sentiments. “There’s not too many places that people can go to for this kind of funding,” she said.

The foundation was established in 1997 in honor of Travis Roy, a Boston University hockey scholarship student who sustained a cervical spinal cord injury during a game and is now quadriplegic. The Foundation has given close to $2 million in individual grants to research projects and rehabilitation institutions that work with individuals with spinal cord injuries nationwide.

Funding can be used toward medical equipment, electronic control devices, computers, modifications to homes or vehicles, and other devices, Taylor said. Individuals seeking grants must demonstrate a financial need. Grants of up to $10,000 have been awarded, Taylor added.

“We are kind of unique, we think, because there aren’t that many organizations out there that will give people money for the purchase of equipment,” Taylor noted. The foundation, however only awards about 15 grants each quarter and has as many as 75 applicants.

Aid for Families

“We have applications coming in everyday,” said Margaret Caporusso, a nurse consultant with Catastrophic Illness in Children Relief Fund Commission (CICRFC) in New Jersey.

CICRFC was created after Donald T. DiFrancesco, then president of the state senate, helped pass legislation in the 1980s designed to reimburse families faced with extraordinary medical expenses due to a child’s illness, Caporusso said.

According to Ralph J. Condo, executive director of (CICRFC), a high number of bankruptcies nationwide are due to extensive medical bills.

“Since 1989, when the first (monetary) awards were approved, we have distributed over $100 million to 4,100 New Jersey families,” Caporusso said. “It’s a very generous program in terms of what we look at.”

Applicants must be a state resident under 21 years of age and have expenses that exceed 10 percent of their annual gross income and 15 percent of any income over $100,000, Caporusso said.

Money in support of CICRFC comes from an assessment that is levied on all state employers, who must contribute $1 per employee per year. The fund falls under the state Department of Human Services.

Although the federal government and several other states have expressed interest in the program, Massachusetts is the only one that has established the fund. “Massachusetts copied our program about five years ago. It is very similar to our program, only their funding source is a little different. They get their money from the state budget,” Condo said.

Condo remains hopeful, however, that both the federal and state governments will follow their lead. He also hopes to see the implementation of a fund in support of seniors. “There’s enough money being wasted in government that could be used for a good cause,” Condo said.

Community Solutions

While Morris is aware of a few local organizations that provide grants to help defray medical expenses, she said they would not begin to put a dent in their bills. “The fundraising efforts were probably more successful for us than applying for grants,” she said. “He had so many people that were helping out. Everybody wanted to find a way to raise money.”

From 5K races to selling bricks, both the Brownsburg and cycling communities raised about $200,000 so Neylon could have the necessary items and accommodations he needed upon his return home. Area residents even donated a number of products and services towards building Neylon’s modified home, Morris added.

“I couldn’t believe how many people jumped in to help,” Neylon said. “When all this was going on, I was just trying to survive basically.”

“We are extremely fortunate to be able to get all these things (quickly) as opposed to having to wait and it’s made a huge difference in his recovery,” Morris said.

For more information on the Travis Roy Foundation, please visit www.travisroyfoundation.org. To contact the Catastrophic Illness in Children Relief Fund Commission, please call 1-800-335-3863 (NJ) or 1-800-882-1435 (MA).

Kelly Rouba is a freelance writer from New Jersey.