Wheelies in the Halls of Congress? Maybe So, Say User Champions

ATLANTA — On Oct. 15, the American Association for Homecare and Medtrade held the show’s first Consumer Advocacy Day, aimed at getting consumers involved in self-advocacy with the nation’s policymakers.

In a Thursday morning session moderated by Georgie Blackburn, vice president of government relations for Blackburn’s, Tarentum, Pa., a panel of advocates discussed a range of personal and policy issues related to Medicare, disabilities and how consumers can better advocate for their own interests.

Panelists included Eric Larson, executive director and CEO of National Spinal Cord Injury Association; Paul Tobin, president and CEO of United Spinal Association; Barbara Rogers, president and CEO of National Emphysema/COPD Association; Tracy Nasca, cofounder and senior vice president of TalkAboutSleep.com; and Jeff Leonard, publisher of New Mobility magazine.

Blackburn raised a number of critical questions to start the discussion:

• Medicare covers durable medical equipment only if required within the home. Is that in concert with promoting optimal function and quality of life?
• Medicare policies have become so complex that physicians are electing to discontinue serving Medicare beneficiaries. How will the growing demand for care be met?
• Beneficiaries find there is an insufficient number of HME providers to handle service and repair requests. Do Medicare’s reimbursement methodologies reduce access to ongoing service?
• Would the government remove a beneficiary’s right to elect to purchase or rent by eliminating the first-month purchase option?

Nasca was diagnosed with severe mixed sleep apnea at age 35 and was given the “choice” of having a tracheotomy or death. At the time, she was unaware of what equipment was appropriate for her. Ultimately, she received the correct bilevel mask, enabling her to live a full, independent life — but she emphasized the importance of consumers educating themselves about the equipment they need.

Rogers addressed the need for providers and consumers to work together. Consumers are entitled to a plan of care for their oxygen therapy, she said, and it is consumers who must speak up about that entitlement. How can providers be expected to continue to provide the level of service and care that consumers deserve without having adequate reimbursement to provide that care, she wondered?

Tobin mentioned a range of issues that affect his group’s members, including the “in-the-home” restriction, which the United Spinal Association works against as a barrier to freedom and independence. NSCIA’s Larson noted the need to retain an independent consumer voice and work with other consumer groups and providers to ensure the best education and advocacy resources for those in need.

But it’s going to take a paradigm shift to get complex rehab consumers the equipment they need — not just what Medicare and the health care establishment want to give them — according to Ann Eubank, OT/L, ATP, executive director of Users First Alliance.

Speaking at another Consumer Advocacy Day session, Eubank said that shift can only come when complex rehab users themselves become advocates for their own care. However, she noted, even as the first-month purchase option for power wheelchairs is in peril (its elimination is included in both the House and Senate health care reform packages), there is largely only silence in one stakeholder quarter.

“Who is missing in Washington?” Eubank asked. “People in wheelchairs. The halls should be flooded in wheels.”

But the halls on Capitol Hill are not flooded with wheels. The phones and email boxes are not flooded with complaints from users that they are not getting equipment.

Why is that, Eubank wondered? “It’s because they are getting something,” she said, adding that it might not be what they need or what they want, but it’s something. And that, she believes, could be the fault of sympathetic HME providers who often give away what is needed but won’t be funded.

“Do not give away stuff,” Eubank directed the audience, pointing out that the government takes note of that and basically concludes the “get less” strategy works just fine.

In a for-profit health care system such as ours, she said, that perpetuates a funding challenge. According to Eubank, users’ needs are too often taking a back seat to funding requirements, causing them to suffer from lesser outcomes and repressed abilities.

“People with disabilities are under-represented, largely poor, disorganized,” Eubank noted. But it doesn’t have to be that way. That’s what the Users First Alliance is about, she said. The alliance wants to generate “a united and strong consumer voice” that cannot be ignored by legislators or payers.

To help empower consumers, Eubank said the Users First Web site will soon feature several aids for people using wheelchairs to help them advocate for themselves. Among the features will be information on obtaining a wheelchair recommendation and case studies on funding and insurance challenges, what to expect and how to fight for a specific product.

Those case studies will need to come from users themselves, she said. Users are invited to log on to www.usersfirst.org to tell their stories.

Following both Thursday sessions, all participants were invited to visit the Medtrade exhibit hall to see the newest and most innovative mobility, respiratory and other home medical equipment products available.