By Miki Fairley, Editor

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

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

"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."