The numbers of amputees needing rehabilitation, prosthetics, and peer support is increasing. Of particular interest are adults losing limbs due to vascular insufficiency, infections, and problems related to diabetes. Due to unemployment and reduction of benefits, many adults lack insurance and resources to return to optimal functioning after losing a limb. Our U.S. healthcare system is not coping well, and support, educational, and outreach organizations are not keeping up with the need.

I frequently get calls from amputees and agencies looking for information and peer support. Despite the existence of national organizations like the Amputee Coalition of America (ACA), many are not in contact with peer support, others lack funding for memberships and meetings, and finally many local groups have fallen apart due to lack of support and burnout of leadership and volunteers.

This feedback is frustrating and depressing. I understand that there are a number of reasons for this including challenges of networking and supporting local organizations, inadequate funding on many levels, maintaining well trained volunteers, and implementing quality controls regarding services provided and user satisfaction. Still, with peer support and education, such an important element in the restoration of a person to full life following an amputation, it is hard to accept the fact that this support is so little available.

Some of the organizations that do exist are not adequately trained for peer counseling or have adequate referral systems in place. In addition, the ACA is not at all well known across the United States, so the vast majority of people undergoing amputations never hear that such an organization exists or that a local organization is available to them.

Due to the growth of prosthetics and rehabilitation programs across the country, this should not be occurring. These facilities and practices could help provide the nucleus of experienced, recovered amputees who could provide peer support. With the help of the practitioners and therapists, referrals could be made to the group, facilities for meetings provided, educational materials made available, and continuity assured. I realize that there are those practitioners and therapists who would use such a forum to try to recruit clients, but this is both unethical and short-sighted. In the long run, educated and empowered amputees will demand more and better prosthetic care and rehabilitation. This should make the prosthetic and therapy practices both more lucrative and more intellectually rewarding. 

This lack of local peer support and educational organizations are very serious impediments to adequate restoration of amputees to optimum life. 

In my next blog, I will further discuss ideas for helping remedy this situation.

In today’s health care system, patients are often discharged from acute care following life-changing events with little or no information or resources. Professionals required to handle complex patients must transfer them through fragmented systems as dictated by payor codes/eligibility requirements, utilization review boards, case management guidelines and limited agency resources.  

In this context, it is unlikely that patients see a specialist, receive valuable resources or have an opportunity to meet or talk to someone who can relate to their concerns. This lack of information promotes feelings of isolation, lowers sense of self esteem and decreases movement toward positive adaptation thus emphasizing the need for peer support.

While rehabilitation specialists can fabricate devices, improve function, appearance and strength, only interaction with other amputees can replace fear of the unknown with information and knowledge. When helplessness, depression and low self esteem are replaced with hopefulness, and the focus on loss evolves into a future vision of quality life with meaning and purpose, then rehabilitation becomes an active collaborative partnership between patients and professionals to reach goals.

Modeling by peers who move beyond minimal survival expectations further demonstrates that quality living can include active participation in sports and recreational activities. Peers can discuss their personal experiences, including training, device modifications and practice with activities of daily living to achieve independence. Reminders of these needs flooded my life, recently in at the Families & Amputees in Motion (FAIM) picnic as new amputees shared experiences including tying shoes, handling multiple items of food on picnic plates and of course, enjoying numerous activities from jumping jack, to tennis and gymnastics.

It is easy to overlook the need for peers as we attempt to focus on possibilities rather than problems. Everyone knows a story from TV, newspapers even magazine about amputees in sports, the military etc. Yet, without the personal interaction, such feats generally seem impossible to the new amputee or new parent still experiencing a profound sense of loss and grief. Most people need to touch, feel and understand foreign concepts prior to acceptance.

If you have not included peer support in your daily practice, you should. It’s as easy as contacting your local support group, scheduling patients with similar issues together. Many people actively support activities, picnics, sport events, instructional programs etc. After over 25 years since FAIM started in Chicago, it’s a joy to see how many new amputee families attend our annual picnic. Experienced amputees willingly talk to new amputees and their families. They share their challenges and demonstrate their accomplishments to others who struggle with the same issues they did many years before. Peer support is a win-win situation! It helps those who give as well as those who receive it. If you have not been involved, you’re missing the opportunity of a lifetime.

“Low expectations” can be a limiting factor in any area of human endeavor. They exist in all generations and cultures and are frequently established by societies, institutions, and agencies to define certain limits of behavior. Although the focus of this blog is disability and rehabilitation, the conclusions can apply to other arenas.

Approaches to medical problems are complex. Most individuals facing disability experience confusion due to lack of information or experience. Primarily, they rely on professionals, media, advertising, Internet, and agencies including third-party payers to guide their decisions.

As medicine and rehabilitation become more specialized, research, technology, and options are increasing, as is confusion over appropriate care, cost effectiveness, and financial resources. Essentially, misinformation continues to be communicated due to inexperience, prejudgement, and lack of openness on the part of professionals. While scientific knowledge is important, professionals cannot limit thinking to accepted theory, standard guidelines, and agency minimums.

I grew up in Chicago, a mecca of medical and prosthetic care, and was fortunate to have more advocates for testing the limits than adversaries who limited their thinking regarding my potential as a high-level hip disarticulation. The fact that I came from a large family, and a $700.00 prosthesis was beyond our financial means, I was referred to the Division of Services for Crippled Children. The agency required a two-year waiting period on cancer patients before they would authorize a prosthesis. Dissatisfied with this low expectation for me, my doctor wrote a prescription stating I needed the limb, and my prosthetist’s American Legion Post funded my first prosthesis. Within six weeks I returned to clinic wearing my new “leg.” Propelled by determination and PTs, I mastered walking, stair climbing, bicycle riding, and roller skating.

The amputation made me eligible for a special education school with daily transportation, and no stairs to climb, etc. Fearful of becoming labeled handicapped and isolated from my peers, I asked to return to my home school where I had to keep up instead of accepting lowered standards. Working as a nursing assistant in college, I asked for a knee that would allow me to walk faster. Despite common wisdom was that the technology would not work for a hip disarticulation prosthesis, the team agreed to try the knee, which I quickly mastered and never looked back.

My application to nursing was challenged due to my amputation. Armed with several letters of recommendation, I completed the bachelor’s and master’s programs in nursing with honors. Again, low expectations would have held me back in these ways that were ultimately shown to be unwarranted.

The message here is that neither children nor adults should be tyrannized or limited by low expectations. Our job should be to support people in living a full quality life. View each situation individually, and it becomes easier to see possibilities rather than problems.

This blog will explore challenging situations to encourage different perspectives. Your comments are welcome!