DULLES, Va. — Is this the year complex rehab finds a voice — and a benefit — of its own? Key stakeholders believe it is, and they are banking on the upcoming CELA conference to lay the groundwork.
Scheduled April 28-30 in Dulles, Va., the Continuing Education and Legislative Advocacy Conference is sponsored by the National Registry of Rehabilitation Technology in association with the National Coalition for Assistive and Rehab Technology. So far, nearly 250 consumers, therapists, providers and manufacturers are pledged to visit Capitol Hill as part of the conference, according to Simon Margolis, NRRTS executive director.
"The goal is to alert members of Congress and their staffs that we are going to push for a bill to be introduced to set up a separate benefit for complex rehab," Margolis said.
NRRTS, together with NCART and other organizations, is working on the initiative. Stakeholders point out that complex rehab products differ significantly from standard DME because each is unique to the user, specialized staff is required to assist in the selection of appropriate equipment and rehab providers are held to greater standards than others.
CELA could be the pivotal step in making that separate benefit a reality, Margolis believes. And that would be a relief after the sector's difficulties in 2009, when both providers and consumers ran into problems after a 9.5 percent Medicare cut to "pay for" the delay in competitive bidding.
Even though complex rehab was exempted from future bids, it was included in the reimbursement cut. That hit rehab providers especially hard, since most skate on a thin margin that seldom exceeds 10 percent, and consumers encountered accessibility dilemmas as a result.
"We had a really tough 2009," said Margolis. "It was a bad year. We did get hit with the 9.5 percent [Medicare reimbursement] cut, which we shouldn't have because Congress already exempted Class 3 chairs from competitive bidding. But this is the year we turn it around."
Margolis believes it will be the consumers' stories that resonate with Congress.
"The thrust of CELA is not the members of the profession coming to the Hill but the consumers coming to the Hill," he said. "We have 40 consumers from all over the country. These folks are coming to tell their own stories as to how the equipment they are using has made them successful and how they were impacted when they couldn't get the equipment they needed … They are coming because they agree with our position that the best way to ensure access is to get a separate category."
Some are making what Margolis calls "Herculean" efforts to get there. A brother and sister from Texas injured in the same accident 20 years ago are making the trek. For them and for others who are paraplegics, it means getting up at 4 a.m., being carried onto a plane and, said Margolis, "risking skin breakdown just sitting in the plane."
"It says something about these people, how important it is to them to advocate for themselves and for other people," he said. Margolis believes their stories will go far in educating members of Congress and telling the real story of complex rehab.
"We can't just go there and say 'Your numbers are wrong.' But when you have a person there who is telling their story face to face, it has immediate veracity," he said.
Margolis said NRRTS is going to chronicle one woman's trip from Denver to Washington.
"We're going to put together a four- to five-minute video on her journey, including interviews with other people who are there, and we're going to get it out to people like Oprah to counter negative publicity," he said.
While Margolis and NRRTS handle the grassroots segment of CELA, Don Clayback, executive director of NCART, and his team will be looking for help in crafting and introducing legislation for a separate benefit.
"We have three messages to carry to members of Congress," Clayback said. "Educate them on rehab technology, what it is and the people it serves; explain the challenges that this technology faces from an access point of view; and then talk about our fix, which is the separate benefit."
Clayback said stakeholders will ask legislators to consider introducing such a bill; short of that, they hope lawmakers will at least support any future legislation by cosponsoring it.
"It really is kind of Phase one — to introduce the problem and what we are doing to correct it," he said. "Phase two would be introducing legislation."
Advocates of the move have established a 20-member steering committee, which has put together a 26-page discussion paper about the separate benefit. The group has also retained Avalere Health, a Washington, D.C.-based consulting firm, to help identify the best means to achieve a separate benefit.
"By the end of May, we should have the Avalere report, which will have additional legislative details. We will have consummated discussions with some consumer groups and we will have had some of these initial conversations with members of Congress. Then we will be in a better position to put a legislative timeline together," Clayback said.
"We want to move as quickly as we can and we also want to be very deliberative. We're taking one step at a time," he added.
To provide input on the separate benefit, e-mail complexrehabtech@gmail.com.
For information about CELA, go to www.nrrts.org. Registration is open through April 16.
