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ADAPTING STANDARDS

 by Becka Baptista, Kirsten Kumar, Mike 

 Thompson & Rachel Goodman 

Catch, drive, finish, recovery.

Catch, drive, finish, recovery.

Catch, drive, finish, recovery.

 

For 5,000 meters, Jonathan Scruggs, 24, repeated those four tasks to glide his slender white carbon fiber boat towards the finish line of the Head of the Colorado Regatta, a rowing race on Oct. 29 in Austin, Texas. As he traveled through the motions, gleeful coos escaped his lips and rippled across the azure surface of Lady Bird Lake to the spectators along the tree-lined shore.    

 

“It’s how he shows he’s enjoying himself,” said Debbie McDiarmid, coach of Texas Rowing for All’s “Dangerous Athletes,” the first intellectually disabled competitive rowing team in Texas, of which Scruggs is a member.

 

When Jonathan was a baby, his mom, Carla, knew something was different about her son, but neither she, nor the doctors, could quite place their finger on it. He’d always say, “I want a cookie” when what he really meant was “I’m hungry.” Motions like kicking a ball didn’t just come to Jonathan naturally, as it does with most toddlers — his mom had to teach him.

 

At the age of four, Jonathan was diagnosed with autism.

Most children with his disability tend to gravitate towards video games, but not Jonathan. “He loved doing things — being outside,” Carla said.

 

He played baseball, YMCA soccer, rode his bike for miles upon miles and kayaked with his Boy Scout

troop.

 

In April 2015, Carla signed him up for a kayaking day with Texas Rowing for All (TRFA), a non-profit organization dedicated to making water sports available to people with physical, sensory and cognitive disabilities.

 

Just four months later, Jonathan was a member of the Dangerous Athletes.

 

As it is a sport that requires use of every muscle group in the body, rowing is especially good for improving motor skills, something people with intellectual disabilities often struggle with. According to Tony Kuhn, TRFA’s program director, the competitive Dangerous Athletes team gives its members opportunities to learn collaboration, improve physical fitness and gain a sense of accomplishment.

“These are hard-working young adults. They train hard,” he said.

 

As Jonathan confidently plopped himself into the boat on race day, I asked him if he was excited about the impending competition as he strapped himself into the rowing shell’s built-in shoes.

 

His response: “Yep. But did you know that I’m training for the Austin Half Marathon?”

Jonathan is always thinking about what he can accomplish next, his mom explained. Rowing has given him confidence in his abilities to pursue goals beyond the water, like participating in the 13.1 mile run.

 

While Carla and many others have seen rowing’s impressive impact on their children and said they consider TRFA’s program necessary therapy, it isn’t something covered by insurance companies.

 

The 8-year-old program does not receive any federal funding, either. However,  TRFA offers sliding-fee pricing based on ability to pay to ensure that anyone can participate. In order to do so, Kuhn must secure grants from various charitable organizations and regularly solicit individuals for donations.

 

Even though Kuhn works with families to figure out suitable payment options, Carla said she’s fearful that it will become infeasible at any price when President-Elect Donald Trump, who said he plans to repeal much of the Affordable Care Act, takes office.

 

Eliminating parts of the Medicaid-expanding act, more commonly known as Obamacare, could allow insurance companies to refuse coverage to those with pre-existing conditions ― a description that fits many people with intellectual disabilities.

 

About 10 million Americans insured by Medicaid are people with disabilities. That’s 15 percent of all enrollees.

 

“It’s a huge fear for friends of mine whose kids are only getting therapy through Medicaid,” Carla said.

For many years, the Scruggs spent close to $1,000 a month out of pocket on Jonathan’s therapy. Some years, they were forced to go into debt to cover the costs.

She said she worries that with rollback on Obamacare, members of the disability community will be forced to pay themselves for essential therapy once covered under their insurance. With many of those people already cash strapped, there just won't be any funds left for important programs like rowing with TRFA.

“He loves being out on the water,” Carla said. “It’s really important to us.”

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