Advocacy: A Win-Win Proposition

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By Mary P. Novotny, RN, MS

Looking at healthcare in general and the O&P profession in particular, consumers and professionals should be natural allies. For years, consumers have been advocating for more information, access to high-quality care, and benefits to pay for needed services. At the same time, O&P practitioners are seeking professional standards and including licensure to ensure quality, the freedom to practice in the marketplace, and adequate reimbursement for the services they provide. These goals are complementary.

Today consumers access more information, ask questions, seek alternatives, and express dissatisfaction when outcomes do not meet expectations. They also experience limitations in funding, forcing them to advocate for themselves. When the consumer receives quality care and coverage for services, the practitioner is rewarded both personally and professionally, and everyone experiences a satisfactory outcome.

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Mary Novotny addresses attendees at a reception celebrating the National Limb Loss Information Center (NLLIC).

Decision makers who dictate policy, demand coverage cuts, and limit reimbursement are the real enemy! They decide who gets the goods, who can access the systems, and how much they are willing to pay. In making the rules that everyone has to follow, they often seek the lowest bid without regard to quality, valuing financial savings over the needs of real people. These are the ignorant decision-makers we must unite against. In the majority of the cases, the mission of controlling money is in direct conflict with that of providing appropriate care.

ACA Success

Resounding success has been achieved by the Amputee Coalition of America (ACA), organized by consumer advocates to reach out, educate, and empower persons with limb loss to become active participants in decisions involving their care.

For example, in 1993, the fledgling ACA, in cooperation with the American Orthotic and Prosthetic Association (AOPA), responded to a 30-day notice from the Durable Medical Equipment Regional Carriers (DMERCs), who planned severe coverage limits for prosthetics in order to curb what they perceived to be fraud and abuse in the industry. The cuts would have eliminated reimbursement for such items as energy-storing feet, hydraulic knees, lightweight sockets, and repairs for all Medicare beneficiaries. With limited time, ACA activated its constituency and collaborated with numerous industry partners to respond to the intended changes. Seventeen thousand signatures were forwarded with petitions for further investigation. Amputees went to the Capitol and held a reception attended by numerous members of Congress and policy advisors.

The results were astounding! Not only was the restrictive plan sacked, but a committee was also formed to develop an alternative to across-the-board cuts. That committee of consumer and professional representatives developed the Functional Level scale used to evaluate individuals on their abilities rather than their diagnosis in developing prescriptions.

The ACA continued to grow and expand its activities. From 1992-1997, ACA advocated with professionals and consumers to educate the public and policymakers about the unmet needs of amputees. After five years of work, ACA's dream was realized with the establishment of a National Limb Loss Information Center (NLLIC) in cooperation with the Centers for Disease Control and Prevention (CDC). Concurrently, ACA partnered with disability groups across the country, advocating for the Americans with Disabilities Act (ADA). Today, ACA is not alone. It has many partners, including Johns Hopkins University, which is doing research on limb loss, and private foundations who share the mission of education.

Paralympic Games

The 1996 Paralympic Games in Atlanta, Georgia, allowed people from around the world to see the positive effects that athletics can have on people with disability. The Games served as a vehicle for changing society's attitudes, breaking down barriers, and giving identity to persons who were once considered second-class citizens.

The Paralympics continue to play a role in educating the public on advanced technology for people with disability, as well as raising societal expectations through positive marketing and the removal of negative attitudes about disabilities.

Many Organizations Help

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Mary posed on the Capitol steps with Doug McCormack, ACA general counsel, during her tenure as ACA president.

Several government agencies, universities, and other organizations now support programs for rehabilitation research, technology, and information dissemination. For instance, through the National Institute for Disability and Rehabilitation Research (NIDRR), support for affordable technology has been under way for several years. Development of low-tech, affordable prosthetics is being conducted at the Center for International Rehabilita-tion (CIR). The National Center for Physical Activity and Disability (NCPAD) at the University of Illinois in Chicago, Illinois, is looking at the barriers to physical activity for people with disability and then developing standards and guidelines to aid in overcoming these barriers.

Communications Technology Spreads the Word

Fortunately, communication is one of the fastest growing industries, largely due to digital technology, easy access to public domain information, and increasing resources through the Internet. Currently, decades of archived journals previously unavailable can be searched through, a network for professionals, consumers, and organizations from all over the world. In the future, issues regarding care, resources, technology and research updates will be connected, with bridges between clinical centers, major information centers, and virtual libraries.

Soon there will be Internet tools connecting humanitarian efforts in order to promote interface between agencies and volunteers as well as those in need of rehabilitation services. However, this too depends on the commitment and efforts of advocates who will make it happen.

Empowered Consumers: Effective Advocates

Empowered consumers are incredibly effective advocates for the professionals upon whom they depend for care. They are much more effective in fighting insurance companies than practitioners, who are perceived as self-serving when it comes to reimbursement. The same is true for advocacy at the local, state and national levels, because when consumers complain in a loud united voice, their representatives listen.

Consumer advocacy power remains largely untapped as a major resource for the O&P profession, despite an increasing need for care and programs to provide adequate reimbursement. Communication, which creates the best environment for advocacy, is lacking. Without more consumer involvement, along with that of knowledgeable practitioners, a tremendous opportunity is being squandered and adverse decisions are not being challenged, despite the resounding success of the ACA in cooperation with AOPA in 1993.

Vision for the Future

My vision for the future is that partnerships to address advocacy issues must be formalized. Advocacy begins with awareness of issues within a big-picture perspective. It requires mutual respect and the overcoming of differences in order to focus on changes that will benefit all. Advocacy involves collaboration, not competition. Each group must share in decision-making, with mutual responsibilities for outcomes. No one person, group, or organization has all the answers.

Mary Novotny RN, MS, has been a rehabilitation nurse, consumer and advocate for over 20 years. She served as a clinical nurse specialist coordinating amputee programs in Chicago, Illinois, facilitated the development of several amputee support programs, and founded the Amputee Coalition of America (ACA). Currently she serves as an advisor and consultant to organizations focused on disability advocacy, education, and improving outcomes.