Mary Novotny: Contributor to Humanity

By Morgan Stanfield

Mary Novotny, RN, MS, is a visionary. For the past 35 years, the founder and former president of the Amputee Coalition of America (ACA) has been changing the landscape of prosthetic care by serving as a tireless leader, advocate, and activist.

Novotny with her husband, orthopedic surgeon Ed Jeffries, MD. Photographs courtesy of Mary Novotny.

"I've always believed people need dreams and goals to focus their energy," Novotny told The O&P EDGE. "Without a dream to aim for, you'll never know what is possible." Novotny has manifested her dream of skillful, accessible care for all amputees in the form of not only the ACA but also the amputee support organization Families and Amputees in Motion (FAIM); publications, videos, and book chapters; lectures to practitioners in many fields; and major cooperative agreements between the ACA and the Centers for Disease Control and Prevention (CDC). She also spearheaded the development of the National Limb Loss Information Center (NLLIC), among many other projects. However, Novotny says, "I rarely felt like what I did was work.... Giving to help others is not work. It rewards the giver far more than one can imagine."

A Very Lucky Cancer Patient

Novotny resting between dives on a scuba trip.

Novotny was born Mary Point in Chicago, the oldest daughter of nine children. "My dad was an engineer, and my mom was a homemaker who raised us with...the knowledge that we could accomplish anything we desired if we were willing to work hard," Novotny says. Little did she know she would begin applying that philosophy at a very young age. One of Novotny's older brothers died of leukemia when he was 11, and Novotny herself was diagnosed with bone cancer in her right leg at age 11. "When my parents broke the news that my leg was going to be amputated at the hip...it felt like a nightmare," she recalls. "I felt helpless and wished there was someone to talk with about losing a leg."

When she got home from the hospital, however, she says, her seven brothers and sisters didn't give her a chance to feel sorry for herself. "Within a few weeks of surgery, I was racing through the house on crutches and doing my share of the chores." When Novotny "vetoed" her parents' offer of a home tutor, they made arrangements for her to return to school, "with one concession," she says. "I could remain at school instead of walking the half-mile back and forth for lunch on crutches in winter."

Novotny attributes part of her career success to that quick rebound into normal life. Another major factor was, she says, having been "a very lucky cancer patient" who by chance had "been exposed to some of the best, most wonderful people who really were not looking at amputees as disabled and limited." Within months of her amputation, Novotny was referred to the University of Illinois-Chicago (UIC) Amputee Clinic, where clinicians treated large numbers of adult and child amputees. The team discussed cases in a kind of theatre-in-the-round, with patients, families, and all kinds of practitioners in one room. Novotny recalls watching each case presentation with amazement. "A college student drove her car from Kansas to the clinic in Chicago. Another patient recently had a baby and needed a new prosthesis. With each amputee's story, the 'nightmare' was fading, and I saw that amputees could lead normal lives." This clinic helped found her lifelong belief that amputees need peer support.

Ray Pellicore, MD, the clinic chief, and his team set no limits on Novotny's activities. When her mother said that she was afraid to let Novotny swim again, Pellicore said, "If you don't want to watch, let her father take her, but don't try to stop her because you're afraid."

When it came time to be fit for a prosthesis, Novotny's family faced another challenge. Due to the uncertain prognosis for cancer patients, Illinois Services for Crippled Children denied Novotny's parents request for financial assistance for her $700 prosthesis. Pellicore ordered the prosthesis anyway. "We'll order the leg, then find funding," Novotny remembers him saying. Her first prosthesis was purchased courtesy of a veterans group that "adopted" her. Novotny recalls the lack of available information when her mother next had to find a prosthetist. Fortunately, her mother's choice, made solely on the basis of proximity, led Novotny to Al "Denny" Denison. His dedication and willingness to "do whatever it took to keep me going led to a lifetime of prosthetic repairs, revisions, and inventions....," Novotny says. [Editor's note: To learn more about Denison, America's oldest known working prosthetist, visit www.oandp.com/articles/2008-08_13.asp]

Nobody Told Me That I Shouldn't Try

Novotny on Capitol Hill in 1997 for the establishment of the National Limb Loss Information Center (NLLIC).

Novotny says that she didn't fully appreciate how lucky she was until she started working in nursing. "I had become this really incredibly independent amputee who accomplished goals like going to nursing school, getting married, and having a family without ever really thinking that I couldn't.... Nobody told me that I shouldn't try, and that was very helpful." That led Novotny to her passion for peer visitation. "When colleagues started asking me to visit patients...it was apparent that most of the patients had little information or idea of what to expect. They needed to see the potential for life after limb loss."

After nursing school, Novotny pursued a master's degree in education, with a focus on rehabilitation nursing, and returned to the UIC Amputee Clinic to do her required research. There, she explored questions regarding amputees' adjustment to limb loss, particularly in terms of body image.

In 1979, Novotny's research led to the founding of Families and Amputees in Motion (FAIM). After graduate school, Novotny stayed on as a volunteer clinic nurse, coordinator, and social worker at the UIC clinic. She and the rest of the clinic team decided that a family picnic could help amputees—and practitioners—connect in valuable ways. That first picnic brought together practitioners and dozens of families to enjoy "real life" together.

"One father told me years later that he'd attended a picnic with his young daughter," Novotny says, "and said that of all the care we had given them, the picnic was by far...the most wonderful experience...."

The picnic has been held every year since, and FAIM is now a major amputee support group.

They Need to Hear You

The original volunteer working group that became the Amputee Coalition of America.

Novotny's pioneering graduate work didn't affect just the FAIM families. After reading her research on adjustment to limb loss, Pellicore insisted that Novotny present it at the Association of Children's Prosthetics and Orthotic Clinics (ACPOC) and the American Academy of Orthopedic Surgeons (AAOS) meetings. Novotny recalls saying, "They don't want to hear me; I'm just a nurse." Pellicore replied, "They need to hear you." After presenting her findings, physicians and nurses soon began asking Novotny to talk to new amputees and present her information at other venues. She still uses some of that material in presentations to this day. "The most important thing I stress is that unless you make the investment in your initial assessment and take time to listen, you may never come to a meeting of the minds with your patient and make them happy."

At that time, Novotny also began advocating as a nurse. "I wrote lots of letters of medical necessity and got involved with trying to improve not only the quality of care but the options that people had."

In the late '80s, Novotny dedicated all of her non-working time to coordinating volunteer efforts and networking at the meetings of the American Academy of Orthotists and Prosthetists (the Academy). At the Academy's 1986 annual meeting, Novotny was a member of a panel that discussed amputee support groups. There, she met with representatives of several other amputee groups, who concurred that they all lacked adequate educational materials and programs, newsletters, and financial support. The group committed to staying in touch and meeting again. "When everyone expressed a desire for materials to train peer visitors," she says, "I teamed up with a social worker who had done [peer visitor] training, and we developed the first Peer Training Manual. We also began a newsletter to let others know of our umbrella organization and invited them to attend future educational programs." The group attracted more members, and in 1989 it incorporated as the Amputee Coalition of America, a 501(c)3 nonprofit educational organization "with a mission of outreach, education, and empowerment for persons with limb loss," Novotny says. While working at a large Chicago hospital as its director of education, Novotny volunteered for the ACA, coordinating the organization's meetings and serving as its liaison to the Academy.

In 1992, Novotny was elected president of the ACA, and the following year, she would count its first major coup in the fight for fair prosthetic coverage. In 1993, the ACA, in cooperation with the American Orthotic & Prosthetic Association (AOPA), responded to a Durable Medical Equipment Regional Carriers (DMERCs) 30-day notice stating that it planned to slash prosthetic coverage to curb fraud and abuse. The cuts would eradicate Medicare reimbursement for essential services and devices including device repairs, lightweight sockets, energy-storing feet, and hydraulic knees. The ACA alerted its members and coordinated with industry partners to send to Congress a crew of amputee activists plus 17,000 signatures on petitions requesting further investigation. They succeeded. Not only did Congress reject the original cuts, it formed a committee of consumer and professional representatives who developed the Functional Level scale.

In 1995, Novotny moved to Knoxville to work full time managing the ACA's programs, development, publications, and grant writing. There, she developed guidelines for support groups, videos, and resources on adaptation to limb loss, helped establish the ACA's annual meeting as a freestanding event, and collaborated with the CDC to establish the NLLIC. In 1999, Novotny again collaborated with the CDC, as well as members of Johns Hopkins University's rehabilitation services program, to undertake a cooperative research projects on limb loss.

Vicky Foster, who started as an ACA information specialist in 1998, recalls from that time, "Mary's involvement with every aspect of the organization was so impressive.... She may have been the president, but she was hands-on, in the trenches, with everybody."

How did Novotny garner so many allies and accomplish so much in so little time? John Michael, MEd, CPO, FISPO, FAAOP, says, "It seems like I've known Mary all of my professional life, and once she has a goal, she's always focused on what's best for the consumer and she just drives toward that goal...with almost unlimited energy." He also calls her "a guileless person."

"She is absolutely what she appears to be," Michael says. "I've never seen her play political games or do anything for personal gain.... What you see is what you get, and you can carry it to the bank. That makes you very eager to do something else with her in the future because you know it's going to be so productive and there won't be any side issues going on."

Taking Her Next Step

Novotny left the ACA in 2000. Since then she has expanded her focus outside of the United States. "I wanted to continue to do things, but at a different level," she says. "I started working on some other projects, like the Digital Resource Foundation for the O&P Community (DRFOP)." She is an advisor to the National Center on Physical Activity & Disability (NCPAD) and the Inclusive Fitness Coalition (IFC), where she promotes physical fitness and full inclusion of persons with disabilities. She is also on the advisory board of the St. Petersburg College (SPC) J.E. Hanger O&P Program in Florida.

Novotny's new goals span what Foster calls Novotny's "hands-on, in-the-trenches" style. They include becoming more proficient in computer design and development of materials and expanding her advocacy initiatives with the International Society for Prosthetics and Orthotics (ISPO). You can bet that Novotny is likely to accomplish all of these goals and many more. According to Mary Fliris, editor of the FAIM newsletter, "Some people look at things and say 'Why?' or 'Why not?' but Mary looks at things and says 'Why not get it done?'"

Morgan Stanfield can be reached at