Amputee Advocacy: What’s Needed?

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By Miki Fairley

Joining in the discussion are Brad Ruhl, chair, Public Policy and Advocacy Committee (PPAC), Amputee Coalition of America (ACA); Anthony "Tony" Barr, founder and president of the Barr Foundation; and Alvin "Al" Pike, CP, president of the Amputee Resource Foundation of America (ARFA).

ACA Speaks

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Brad Ruhl, chair, Public Policy and Advocacy Committee (PPAC), Amputee Coalition of America (ACA)

Although the ACA has been active in advocacy since its founding, its efforts have not previously been formally organized and structured, Ruhl said. As the organization has grown, the Board of Directors decided that the ACA needed a formal structure to develop advocacy initiatives that represent the wishes of the membership. Funds other than those supplied by the Centers for Disease Control (CDC) may be used for advocacy, he noted.

The PPAC was established during the Board of Directors meeting last fall. The organization is surveying its members to identify key issues, "rather than merely reacting to the squeaky wheels out there," Ruhl said.

"The survey results will help us identify and prioritize the key issues that the membership feels are most important." Grass Roots Committees will be formed to initiate more detailed discussion of the prioritized issues, and recommendations will be forwarded to Policy Review Groups (PRGs), which will include physicians, prosthetists, other healthcare professionals, and amputees-not all ACA members. These groups will draft initial policy and position statements which will be sent to the PPAC. In turn, the PPAC will make recommendations to the Board of Directors, which will implement policies, position statements, and advocacy initiatives.

Although only a small sample of survey results is currently available, recurring themes have appeared, Ruhl said. He listed these as: comprehensive insurance coverage, access to quality care by qualified providers, and more research and development of advanced technology.

Barr Discusses Views

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Anthony "Tony" Barr, founder and president of the Barr Foundation

"Amputees have to come to the realization that, without their input, nothing is going to change," Barr said. "They complain about not having sufficient insurance coverage, but amputees must take a role in advocacy as end users."

The Negotiated Rulemaking (NegReg) Committee of the Centers for Medicare and Medicaid Services (CMS) is the key element in advocacy right now, Barr emphasized. This committee, which includes organizations with an interest in the practice of O&P, is an advisory group to assist in establishing rules for implementing legislation protecting healthcare consumers. A vital part of its responsibility is recommending O&P provider qualifications.

"I found that there is no consumer representation," Barr said, adding that members of the Paralyzed Veterans of America (PVA), which has a committee seat, are not prosthetic or orthotic users. Other consumer organizations were invited, but declined, Barr said. The Barr Foundation has requested a seat.

Barr is a strong advocate of O&P licensure. "A license will not stop someone from providing bad care, but a license provides something that can be taken away-that person no longer can provide that service," he said. "So, accountability enters the picture. Insurance companies are getting wiser to the fact that this is an unregulated profession," Barr continued. "They are reviewing their policies and factors for coverage. They see an alarming projection of increased numbers of amputees; when they find that providers of prosthetic services are not regulated, they are going to find ways to limit coverage."

Seven states have passed licensing laws; however, the New Jersey law has not been implemented due to lack of funding. Barr noted that, after the Florida licensure bill was passed, Medicaid extended prosthetic coverage to adults-a result he wants to see in other states with licensure.

"What is custom and what is non-custom-these battles have been won on a state level," he said. "Now we have to take it to the federal level. If we can duplicate the qualifications that have been achieved in six states in the (NegReg) Committee, I'd be very happy."

Certification Issues

How do the ACA and the Barr Foundation feel about certification?

"The ACA recognizes certification from ABC (American Board for Certification in Orthotics and Prosthetics), BOC (Board for Orthotist Prosthetist Certification) and state licensure as the minimum standards it endorses or accepts on behalf of its membership," said Ruhl. Read ACA's complete statement on provider qualifications .

"We have become so misdirected on certification issues that we have forgotten that neither certification allows enforcement or provision of proper services," Barr said.

Both Ruhl and Barr said their organizations look to partnering with other provider and consumer organizations to combine strengths when there are synergies in their goals.

Pike Comments

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Alvin "Al" Pike, CP, president of the Amputee Resource Foundation of America (ARFA)

Pike is a past president of the American Academy of Orthotists and Prosthetists (AAOP) and the first recipient of the ACA's Professional Achievement Award. He also established the first Internet information resource in the US for amputees.

Pike spoke for this article as an individual, not as ARFA president, since the organization, as a 501c3 charitable foundation, does not engage in advocacy.

"I would like to see an amputee advocacy organization that is at arms length from the prosthetics industry and not dependent upon the prosthetics industry for financial support to sustain itself," Pike said.

One of the greatest needs is to start addressing the projected increase in the population requiring prostheses by 2020 and the shortage of trained prosthetists starting as soon as 2005, if not sooner, Pike said. "Ways to address that need may be a paradigm shift in the delivery system of prostheses," he continued. "One way would be a cooperative (CO/OP) venture between amputee organization(s) and individual members of the prosthetics profession."

"A second approach would be to incorporate the delivery of prostheses into the reimbursement system by locating prosthetic facilities within major medical centers as part of PM&R services and compensating the prosthetic practitioner (CP) according to the knowledge and skill set needed to fit and assemble today's modern prosthetic appliances." A model of this system is already working within the Department of Veterans Affairs (VA) medical centers, Pike said. With demographics shifting to an older population and advances in medicine, Pike visualizes Medicare Prosthetic Treatment Centers like today's VA Prosthetic Treatment Centers.

"These two approaches would help to reduce the cost of providing prostheses to a growing amputee population, and reduce the temptation for fraud and abuse, upcoding, and gaming of the system." Pike added, "There will still be many amputees unable to afford prostheses, but given the generosity of this great country and organizations like the Amputee Resource Foundation of America, the Barr Foundation, Limbs for Life Foundation, and volunteers from the prosthetic treatment centers, their needs will also be addressed."