Rehab industry on cusp of 'paradigm shift'

With 54 consumers scheduled to accompany complex rehab providers on Capitol Hill Thursday as part of the Continuing Education and Legislative Advocacy Conference (CELA), the industry has finally turned a corner, stakeholders say.

On Wednesday, the day before the visits, Jeff Leonard, publisher of New Mobility, a magazine for consumers, told attendees during a presentation on consumer self-advocacy: “Tomorrow begins the paradigm shift in this industry.”

By offering scholarships, NRRTS was able to attract six times as many consumers to the conference this year compared to last year.

That's what happens when the industry puts its mind to something, says Simon Margolis, executive director of NRRTS, which organizes the conference each year.

“We just made it an emphasis,” he said. “We're moving from having people advocate for us to advocating for ourselves.”

Ann Eubank, executive director of the Users First Alliance, an organization that seeks to ensure appropriate access to rehab equipment, also spoke on consumer self-advocacy and, like Leonard, used the words “paradigm shift.” She told attendees that the Users First Alliance plans to play a bigger role in empowering consumers, as well as providers and clinicians, by, among other things, filing for nonprofit status; developing an online “decision tree” that consumers can use to guide them through the process of obtaining rehab equipment; and gathering stories, on paper and on tape, that exemplify the value of complex rehab.

“We want to be the AARP of this industry,” she said.

Consumers, 125 providers and manufacturers from 40 states, and 18 clinicians plan to make 221 visits with representatives and senators Thursday. Their message: Support our efforts to create a separate benefit for complex rehab, even if those efforts are still in their beginning stages.

“Tomorrow's not a destination,” said Don Clayback, executive director of NCART, which is leading efforts to create the separate benefit. “It's part of the journey. Something of this significance is going to require some repeat messaging.”

Other tidbits from CELA, day 1:

*On the importance of having consumers participate in the Capitol Hill visits: “It makes a flat picture three dimensional,” Margolis said.

*To make consumers feel at home, providers Gerry Dickerson and John Zona were setting up hotel rooms with HME like hospital beds on Tuesday.

*New Mobility received about 300 applications from consumers to attend CELA.

*Dr. Suzanne Groah, director of spinal cord research at National Rehab Hospital, shared the results of a study she and her team just completed that shows consumers with spinal cord injuries who use higher level manual and power wheelchairs are better off.

*Avalere Health Group is working on a report on the payment options for a separate benefit for complex rehab. On the table, according to Rita Hostak, vice president of government relations for Sunrise Medical: a modified form of gap filling; and an add-on payment for innovation, which would help manufacturers recoup some of their R&D costs.

Liz Beaulieu