Paddy Rossbach, RN, president and CEO of the Amputee Coalition of America (ACA) knows what to look for in a prosthetist.
As a registered nurse, Rossbach is familiar with the healthcare arena, and since 1984 she has specialized in educating, supporting, and advocating for persons with amputations or born with limb differences. She also consults for Landmine Survivors Network (LSN), traveling to its network countries and teaching outreach workers about peer visitation. She has been an amputee since the age of six, but this has not slowed her down. She has competed in marathons, horsemanship events, and she skis and scuba dives. Having studied the effects of an aerobic conditioning program on the energy cost of amputees at The Hospital for Special Surgery in New York, New York, she co-founded and is the president of ASPIRE Inc., a nonprofit organization which encourages young amputees to be active through sports.
"As an educated consumer, I would look for someone who is currently certified or state-licensed," says Rossbach. "I would look for someone with a clean, accessible facility and friendly, people-oriented staff." She also would ask to meet some of the prosthetist's clients who have a similar amputation to see if they were comfortable, happy with the care received, and able to have the function they wanted.
Having a good personal relationship with the prosthetist and feeling comfortable and confident with him or her are also essential, Rossbach believes. "Just because somebody can fit you doesn't mean you can have a good relationship with them for the rest of your life. You have to be able to interact and communicate with them and feel they are listening to you. You have to feel sure that what they are telling you is correct."
Rossbach is appreciative of the quality of care she has received, but painfully realizes that not everyone is able to have the same high standard of care. "Because I've had really good care, I have been able to achieve what I want to do and stay as healthy as I am. But I look at some other people and see that they are not getting that sort of care, so their outcome is going to be far different than mine."
Consumers: Know Your Options
Rossbach continues, "Like any other profession, there are excellent prosthetists and some that are not so good. That's why it's so important for patients to make an educated choice regarding their prosthetist."
Rossbach does not agree with the idea of a prosthetist simply being brought into the hospital to fit that patient. "If that person is the best one for the job, then that's okay, but if not, the patient needs to be aware of their option to have someone else." With elective amputations, Rossbach encourages patients to arrange in advance for a prosthetist of their choice. Not only is a good patient-prosthetist relationship important, but with the difficulties of insurance coverage, if the patient receives an uncomfortable, ill-fitting prosthesis, he or she may not be able to obtain another one in a timely way.
How common are ill-fitting prostheses? "You just have to look around at some of our meetings and see some of the prostheses, which are not aligned and fitted correctly," says Rossbach. "You hear about people that have four prostheses in their closets before they finally find someone who fits them correctly and comfortably."
Of course, an enormous limiting factor for amputees is the extent of their insurance coverage. Prosthetic and orthotic coverage often is something people are unaware of until they need it. "A good facility will be able to give them an answer regarding what their insurance will cover and what they will have to pay out-of-pocket," says Rossbach. And insurance coverage can be a determining factor in choice of prosthetist-for instance, is their provider of choice in or out of the provider network used by the insurer?
Often, amputees find themselves feeling lost, especially if the amputation is a sudden, unexpected one due to accident or other injury. Rossbach recalls a time when she talked to an amputee who was given no help at all after leaving the hospital. The amputee looked for a prosthetist in the Yellow Pages. "That turned out to be disastrous," remembers Rossbach. "That is why we are trying to get our Because We Care program into hospitals, so patients and parents with limb-deficient children will have the information they need at the right time. Thus, they will not be floundering or simply going to the prosthetist contracted with the hospital."
Prosthetic Parity Laws
The ACA, along with other advocates, is striving to achieve prosthetic parity laws in all states. The ACA defines "prosthetic parity" as "insurance companies covering appropriate prosthetic care."
Discussing prosthetic parity, Rossbach says, "Right now we are working very hard, but it's going to be a very long, difficult struggle. It's certainly not going to happen this year." Currently, three states have passed slightly different versions of a parity law based on Colorado's experience, and several more are in the process of getting bills introduced, notes Rossbach.
On its website, www.amputee-coalition.org, the ACA provides updates on what's happening with prosthetic parity legislation in the various states and a Prosthetic Parity Law State Organizer's Toolkit, which can be downloaded in PDF format. For more information, visit http://www.amputee-coalition.org/aca_advocacy_stateparity.html.
Improving Prosthetic Care
To help elevate the prosthetic profession and standards, Rossbach says, "First of all, I think they need to unify, if they want to be thought of as professionals on a level with other healthcare providers, and stop fighting amongst themselves when they could be spending their time trying to do a better job.
"There needs to be a better way of assessing their skills before they are let out into the field than is being done at present," she adds. "They need to continue their training; it is a very specialized field. It's not just a matter of book learning; it's definitely a very hands-on profession."
'Team Approach Best'
Rossbach is a strong proponent of the team approach to amputation and rehab care. "Each member of the team should understand the role and responsibilities of the others, and someone needs to be in charge of the program to see that each part takes place, and that a patient doesn't get dropped through the cracks. Everyone needs to know what everyone else is doing-and that doesn't always happen. Sometimes the different disciplines act in isolation: for instance, the surgeon does his job, and that's it. Then someone else picks up the physical therapy, and that's the end for them. Then the prosthetist works with the patient for awhile, and then finds another physical therapist to do the gait training.
"But it should be one long seamless plan of care," she declares.
Rossbach emphatically stresses the need in elective amputation and, if possible, in traumatic amputation, for the surgeon and prosthetist to discuss and work together to coordinate surgery and prosthetic fitting. For instance, she says, "It's too late three weeks later to say, 'If the limb length were longer or shorter, I could put much better componentry on this patient, etc.'"
The prosthetists doing the best jobs are the ones who have a good relationship with the surgeons who refer patients to them, she believes. "They interact together so that each one respects the other's job and is able to do a program of care that is best for the patient."
Physical therapists too need to know enough about prosthetics to help the patient best use their new limbs, says Rossbach. "They don't need to know how to build or adjust them, but they do need to know when a prosthesis is fitting, not fitting, or needs realignment or other adjustment, so they can call this to the attention of the prosthetist."
A problem Rossbach see with various members of the rehab team is that other disciplines frequently know little about prosthetics. "Unfortunately, healthcare providers get most of their education about amputation in their initial training. Amputees make up a small percentage of their practice, and they don't get continuing education in up-to-date technology and techniques." She cites the situation in which a new amputee may have a physical therapist say, "Oh, I'm so happy I'm going to rehab you! I've never rehabbed an amputee before, and this is so exciting for me!"
"Well, I wouldn't want someone learning on me!" Rossbach exclaims.
Encouraging Others
Although recognizing current problems in insurance coverage, prosthetic care, and other challenges amputees must confront, Rossbach is upbeat. She encourages other amputees: "Amputation can either destroy you or you can make it work for you. You are not defined by the fact you have lost a limb. You are defined by what you make of your life with what you have."
