On April 18, Florida Senate Ethics and Elections Committee convened in Tallahassee, Fla., for a hearing to confirm Alan Levine, secretary of the Florida Agency for Health Care Administration. At the hearing, several mobility users spoke out on the shortfalls of the Medicaid system.
Here are some of their comments:
Candi Gidden, whose daughter Ashton uses a Permobil Robo power wheelchair, reminded Levine of their first meeting and her comment to him about “what a black hole he was stepping off in regarding the Medicaid system.” She lashed out at the system, calling it “an outdated, ignorant mode of mobility prescription … based on medical definition not individual ability or the wishes of the families that know her best.” Her daughter, who does not have use of her legs, was denied four times for a power chair. Ultimately, her local community raised the funds necessary to purchase the equipment.
“It has opened up a whole new world for her. It has given her opportunities that she would not have had,” said Gidden. Mike Gidden echoed those comments, saying he was “appalled that we were told the wheelchair was not medially necessary.”
Elias Feliciano’s son Elias who has a power wheelchair after 16 months battling the system. “My concern is my son’s just one. We’re just one family. I wonder if there’s other children and other families with children sitting on a seat that were exhausted and couldn’t go through all of the stuff we went through for 16 months.” said Feliciano. “It’s not fair to anyone … I just feel something needs to be done.”
Elias was denied the chair because Medicaid said it wasn’t medically necessary. “I couldn’t believe that (Medicare) would deny my son or anyone the opportunity to progress in life and advance in this chair, and this chair was the specific chair he needs to be independent and grow” said Feliciano.
Medicaid offered “countless excuses” before finally approving the chair. “We sold our home we followed all of the guidelines and all of the policies,” said Feliciano. “And every time we went back they’d add something or change something. I sold a house that we were happy (because) they said it was our house (that) was the reason … they denied us. We bought another house that (with a) floor plan (that) was open, open doors, pocket doors, handicapped accessible. I bought the ramp for the front door. I had a bunch of support from friends and family that helped us do it because we didn’t have the means to do it. And they still denied us the second time. They said we needed a lift on our truck… but I didn’t see buying a lift and not having a chair.”
Feliciano testified that the battle was ultimately worth it for his son. “Since he’s had this chair, if you could only see, I spend hours outside with him and the grin doesn’t come off his face.”
Darren Jernigan spoke, vice president of government affairs at Permobil, called on Secretary Levine to lift in the home rule, which he said “goes against several provisions and laws that have been passed — the ADA, the Ticket to Work for people to get out to try to get a job, the president’s new Freedom Initiative.” Jernigan said that basically a state employee is saying no to mobility equipment and going against the physical therapist and physician.
Jody Whitmyer, of Whitmyer Biomechanics, Tallahassee, recounted how his formerly fast-growing business ultimately closed because of declining profits due to more bureaucracy and paperwork with the Medicaid system. He told the committee that the least costly alternative doesn’t always mix with the other mobility components to provide a medically effective solution for clients. “The bureaucracy that?s involved in getting equipment funded is just insane in that my salespeople not only have to go out and work with the therapist and the physician and the clients to determine what options might be best but we also have to prove to the Medicaid system what options we’ve eliminated,” Whitmyer said. “Now image that you have to write a bunch of parameters for this equipment that you see up here, but in addition, your salesperson that you’re paying, has to write up parameters of five other pieces of equipment that were inappropriate. And imagine that you’re not getting paid to write up that justification. And it’s just really crazy sometimes trying to fight this battle. That’s why I was a casualty of it.”
Whitmyer also addressed committee’s concern over the cost of the equipment, confirming that it is in fact expensive. “Many of you, as well as many of the people in the audience, think nothing of going out and spending $30,000 on an automobile that they sit in maybe two hours a day. People are sitting in this equipment all day long — 10, 12, 14 hours.”
Dr. J.R. Harding called both Medicare and Medicaid “a mess.”
Manyvone Champavannrath, who has cerebral palsy, spoke about what her equipment means to her. “My chair is everything to me. It allows me to have a normal life,” she said. Champavannrath also said that because she is on Medicare and Medicaid she has really been placed in a difficult situation where the system doesn’t reimburse her chair and forced her out of a 25-year relationship with her mobility dealer.
To see more video snippets of client testimonials, visit www.zeang.com/RobertFig/LightshipMedia/LevineHearing25.wmv and www.zeang.com/Robertfig/LightshipMedia.
