Like many teens, these two have big ambitions. Antonio Childress aspires to design clothing and be a writer. Jake Sayre wants to become the nation’s president.
They are so bright and determined, it’s hard to imagine anything could keep them from working toward their goals.
Cerebral palsy certainly isn’t slowing them down.
Perhaps their biggest challenge requires pushing past outdated thinking to what lies beyond: lives enriched with opportunity.
Sayre’s mother, Clarissa Siebern, has faced down that challenge — and she also knows how determination can, as the old expression goes, move mountains.
When her son was a child, Siebern brought him to a speech given by a man named Matthew Wangeman. Wangeman is now a professor at Northern Arizona University, but back then he was a recent graduate of University of California-Berkeley.
Wangeman has cerebral palsy. He also has an advanced degree, a career, a marriage and a son.
“For me, I realized anything is possible and I don’t want to ever say no,” she said of that talk years ago. “The obstacles that are created become the detrimental disability, not their disability.”
In the fight to help her son, Siebern has appealed numerous insurance rejections. One of the most significant was over a standing power wheelchair, which costs a whopping $54,000. Her son’s doctor recommended the chair, which could improve his health and mobility. Sayre wanted it badly and his mother was not going to settle for a no. (For comparison’s sake, she points out that her son’s physical challenges were compounded by prolonged sitting, which can lead to more corrective surgeries — often topping $100,000).
Siebern received help from former Arizona Congresswoman Gabrielle Giffords, and eventually found her way to the Arizona Center for Disability Law — and attorney Jennifer Nye.
Nye proved the wheelchair was medically necessary for people with cerebral palsy, and that Arizona’s Medicaid program needs to provide young people, age 21 and younger, with the equipment a doctor says will improve their health.
“At the time, the general rule was that they didn’t provide power standers to kids unless they had spinal-cord injuries,” said Nye, who now lives in New England.
That win was in 2010 and since then, Siebern said, at least 15 others have received a standing powerchair.
“It turned his life around, physically and emotionally,” she said of her son. The ability to stand allows for better circulation, and, hopefully, fewer surgeries due to joint and muscle problems.
Sayre, 18, said the change has been remarkable. “My whole body would hurt because I could not move as much,” he wrote, in an email, of his old chair. Now he not only feels better, but he said he loves that he can hug people, and look directly into their eyes.
Standing feels good
Nye said parents and caregivers of children with disabilities should not get discouraged by denials — and should seek help. (To learn more about representing yourself in an appeal, visit the Arizona Center for Disability Law’s self-advocacy section at www.acdl.com/selfguides.html).
“Just because something is denied doesn’t mean it’s not covered,” Nye said. “The only reason Jake has that wheelchair today is because his parents, his mom, filed an appeal.”
Nationwide, a great push is underway to help more people with physical disabilities get the technology they need, said Curtis Decker of the National Disability Rights Network in Washington, D.C.
The ITEM Coalition — Independence Through Enhancement of Medicare and Medicaid — is working to “modernize the world of Medicaid,” he said. (Learn more at itemcoalition.org).
“Unfortunately, payment options haven’t kept pace with advancements in technology,” he said. “There are still some pretty outdated federal policies.”
Wheelchairs that provide a lift or allow a person to stand offer great benefits, he said, such as allowing a person to reach high enough to cook and clean, or be free of the pain and poor circulation that comes from sitting hour after hour, day after day.
Beyond the chair
Childress, who graduated from high school last year, is still working toward getting his standing chair.
During the last year, he’s received job training through DKA Inc. Rehabilitation Services, which helps people with disabilities transition into regular jobs. Childress, 18, has limited mobility, but he’s now able to do photo restoration — primarily by using his left elbow.
He hopes a new wheelchair and better technology will enable him to do more.
“I am hoping that there will be a program on the computer that I can design clothing with,” Childress wrote in an email exchange. Through Tucson’s Arts for All, Childress creates artwork. He loves music and writes poetry full of dreams and wishes for others to see him for who he is: intelligent, creative and ready for more.
“I think that some people just see the chair and not me,” he wrote. “I wrote a poem about treating others the way you want to be treated.”
One of the lines: “All of the flowers outside in the summer aren’t the same, then why should we be the same?”
Inspired by Roosevelt
Siebern watches the progress of her son and his friends, and wishes there was more foresight and career planning for students with disabilities.
“You’d think that when they are young and in grade school, it would be, ‘Let’s plan ahead and see what you’re going to need,’ and it isn’t that way at all,” she said. “What’s needed is extremely challenging and there isn’t foresight to plan for the future, to give them a future.”
Sayre, who met Childress in elementary school, is working on catching up with his studies. He had an undiagnosed hearing problem until he was 14 and it set him back a bit on his math and reading.
“I remember the first time I heard new sounds like rain, and voices that I hadn’t heard clearly,” Sayre wrote of getting hearing aids. “I can talk and hear much better now.”
Sayre is inspired by the life and presidency of Franklin D. Roosevelt. Roosevelt, who had polio-induced paralysis, could not walk and could stand only with braces.
“He had a wheelchair, wore leg braces, he had therapies, modifications in his home and a modified vehicle,” Sayre wrote. “His life was like mine. He had a disability and he became president.”