Consumers rock CELA
I followed CELA's New York team around Capitol Hill last week as they visited more than 25 congressional offices. I think I hit about 8-10 of those as I followed different people around during the day.
One of the New York advocates was Paul Tobin, a consumer and the president and CEO of United Spinal. (He'll be back on the Hill in June for his organization's Roll on Capitol Hill, promoting HR 4378 again and other bills that would help United Spinal members.)
Tobin is living proof of what having the right complex rehab equipment can do for someone. He was injured in a swimming accident in his 20s, and, instead of being confined to a bed, he's pursuing his PhD and is the head of a huge national organization.
"I wouldn’t be able to do what I do today without it," Tobin told people as he answered questions about himself and the bill.
During the debriefing, I got to talk to a few more consumer advocates about their day on the Hill.
Fin Bullers, a 48-year-old father of two from Kansas City, Mo., has fought with Charcot-Marie-Tooth, a Lou Gehrig-type muscular dystrophy his whole life. He was also a reporter for 25 years and said in his interview with me that it was weird for him to be on the other side of the notebook.
This was Bullers' first time on the Hill, and by the end of the day, both his wheelchair batteries and personal energy were low, he said, but he called the day "incredibly energizing" for his soul. His message: getting people the CRT they need will get them back out into the community and into the workforce.
"It's not just me I'm lobbying for," said Bullers. "I'm here for 54 million people who need a voice. We want to contribute and give back—this is not a handout situation."
Marita Niquette from Southwick, Mass., was there for her second CELA event. Having consumers campaigning for the bill is important, she said.
"We want to show Congress that if we didn't have this we couldn't work—we'd be stuck in the house," said Niquette.
She said having the bill in hand made a big difference this year.
Her friend from college, Robert Melia from Orlando, Fla., agreed. Melia was there for his third CELA. He said getting the bill introduced was a major hurdle.
"Before, that was always a stumbling block: What's the bill number? What's the score?" said Melia.
CRT equipment allows consumers to be independent and ensure a greater quality of life, he said. He gave the example of having the wrong equipment being like trying to play basketball with sneakers three sizes too big.
"That really hit home," he said. "People don't understand what this equipment is worth to us."
More information on the consumer advocates is available in the most recent edition of Directions, at http://www.editionduo.com/publication/?i=105778&pre=1.