Mobility

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

AAHomecare and Medtrade held the first Consumer Advocacy Day, aimed at getting consumers involved in self-advocacy with policymakers.

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?

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