By Becky Bruce

Regional Representatives Meeting 

As promised in the last issue of the Communicator, this article will expand on the goals and accomplishments of the regional representative's meeting that was held in Knoxville on January 12, 2001. Following is a summary of the meeting's goals and how the representatives feel about the important work they are doing.

The primary focus of the meeting was to establish the roles of each regional representative and to encourage communication between the Amputee Coalition and the representatives, as well as interaction between the representatives themselves. The remainder of the goals centered around identifying the best ways to obtain feedback from local support groups, formulating guidelines and procedures governing the interaction between representatives and the Amputee Coalition, proposing attainable goals for the upcoming year, and simply getting to know each other.

As the meeting progressed, it was clear that most of the representatives share some common concerns. These include lack of knowledge regarding Amputee Coalition activities, dealing with negative comments and how best to boost morale, how far should regional representatives go to help their constituents, managing the rapidly expanding role of being a volunteer regional representative, and developing relationships with local support groups and other available resources within each region.

The afternoon was spent discussing the Amputee Coalition's responsibilities and expectations, and in developing ideas for enhancing communications and relationships between regional representatives and local support groups. The representatives were unanimous in identifying their wants and needs for Amputee Coalition support. The primary needs identified were a) clear expectations on their responsibilities, b) instruction on ways to do their jobs more effectively, c) timely communication and correction of problems, d) increased Amputee Coalition availability as a resource for representatives when needed, and e) Amputee Coalition help to promote regional communications. 

In terms of how to enhance support group/Amputee Coalition relationships, the representatives had many ideas and suggestions. The first and foremost involved developing improved communications. The best way to stay informed of what is going on within any region is for the representatives to maintain close contact with local groups. They felt it was most important to be supportive; to educate, encourage, and empower; to be resourceful, respectful, responsible, and responsive to local groups; and helping to make it as exciting as possible for local groups to be involved in amputee outreach.

All of these goals, responsibilities, and suggestions will be discussed again at the Annual Meeting in Kansas City. If you have any questions, comments, or suggestions you would like discussed at that meeting, please contact your regional representative and relay that information to them. If you're not sure who your representative is, please call me, or you can go to the Amputee Coalition Web site at http://www.amputee-coalition.org/. The regions and their representatives can be found on the National Peer Network, Regional Representatives page.

As a reminder, there is still one region in need of a volunteer representative. Region F, which contains the states of Alabama, Kentucky, Mississippi, and Tennessee, is the only region still without representation. If you are interested in volunteering, please call me toll free at 1-888-267-5669, Ext. 8113.

Amputee Coalition's Active Presence in Washington

The Amputee Coalition is unique in that it was established and has grown to its present size without having an office in the Washington, D.C. area. Most non-profit organizations have found it essential to establish a second office in or near Washington, or to move their principal office there. For example, the American Cancer Society's Washington public policy office employs approximately forty-five staff people, the majority of whom are focused on legislative and executive branch advocacy.

A Washington, D.C. presence for the Amputee Coalition is necessary not only because of the need to be visible on Capitol Hill but more importantly, because of the coordination and contact we need to maintain with the various agencies of Executive Branch of the U.S. Government and with the private associations and quasi-legal commissions that are involved with issues relating to those with limb loss. Moreover, Amputee Coalition is competing with very large voluntary health agencies, such as the American Diabetes Association among many others, for resources and the attention of key Members of Congress.

The Amputee Coalition national office is well established in Knoxville and there are so many reasons that it should stay there that moving the office has never been seriously considered. So rather than move or establish a satellite office in Washington, given the extremely high costs of rent and salaries there, the Amputee Coalition has chosen over the years to maintain a relationship with the law firm of Arent Fox and with their Associate, Doug McCormack. Doug, who is an amputee, has been involved with the Amputee Coalition from its inception and has also served on the Board of Directors. Most importantly, he is extremely knowledgeable about the Amputee Coalition agenda. He and the other members of the Arent Fox firm are experts in advancing the Amputee Coalition name and it's initiatives. It should be understood that the representation Amputee Coalition receives in Washington is "advocacy," not "lobbying." Here are just a few benefits of Amputee Coalition's efforts in Washington:

•  The National Limb Loss Information Center, a program central to Amputee Coalition's growth and stability, was developed through federal support secured through these advocacy efforts. This initiative has provided nearly half of Amputee Coalition's operating budget since 1997, supporting much of Amputee Coalition's educational outreach efforts, including the Amputee Coalition Peer Support Network.
•  The Limb Loss Research and Statistics initiative, a joint initiative with Johns Hopkins University to address the issue of insufficient statistics on the amputee population, was established as a congressional priority and ultimately was funded through Washington legislative activity.
•  Our Washington representatives, working with Senator Bob Kerrey (an amputee himself), secured legislative direction to eliminate a five-year waiting period on replacement prostheses imposed on amputees residing in certain geographic areas covered under the Medicare program.
•  Our Washington representatives have enhanced Amputee Coalition's relationship with the Centers for Disease Control and Prevention and have secured increased funding with strong Congressional support. Additionally, the contract was extended last year for another three-year term providing over $4 million in additional support to the Amputee Coalition.
•  The National Limb Loss Information Center was written into law in the Children's Health Act of 2000, ensuring that the Center is an ongoing program of the Centers for Disease Control and Prevention.
•  Childhood bone cancer has been established as a priority issue of the National Cancer Institute and the National Institute for Arthritis, Musculoskeletal and Skin Diseases at the National Institutes of Health.

We could never have achieved these advances without Washington, D. C. representation. We believe the results of these efforts, and the benefits they bring to Amputee Coalition on behalf of all persons with limb loss, are well worth the roughly 3% of our budget that we invest in our advocacy program.

This article is adapted from a recent paper, written by the Amputee Coalition Board of Directors.