VOLUME 3 NO. 4
August, 2002
Amputee Coalition of America - National Limb Loss Information Center
900 E. Hill Avenue, Suite 205, Knoxville, TN 37915 · 888-AMP-KNOW (267-5669)
Richard Mooney, editor; e-mail: matlmgr@jps.net - Becky Bruce, coordinator; e-mail: rbruce@amputee-coalition.org
. . . Dedicated to Enhancing Support Group Leadership Skills
Peer Visitation Corner
The Give and Gain of Peer Visitation
What goes around, comes around...
Peer Visitation Q & A Forum
by Kathy Spozio
The Give and Gain of Peer Visitation
What goes around, comes around...
When we think of peer visitation, we usually associate it with service to a new amputee or family member, often times overlooking the opportunity it may present to benefit the visitor. This story will focus on just that--how peer visitation may and, in this case, has changed the life of Charlie Underwood of South Knoxville, Tennessee.
In 1990, admittedly quiet and reserved Charlie Underwood was about to have his life changed forever. For the past year, he had been experiencing coldness in his left foot, undiagnosed despite several attempts by medical professionals. The day started, as most any for him, as he headed out to his job on a construction crew, however, coldness in his left foot turned to excruciating pain at mid-day. Charlie had no choice but to seek medical attention again, but the same puzzling result occurred; nothing was diagnosed and Charlie returned home until the pain subsided. Coincidentally, a few days later, he was on another job hanging wallpaper for a medical doctor with whom he shared the story of his ongoing symptoms. On the doctor's advice, Charlie left the job site immediately and headed directly for the University of Tennessee hospital where he was diagnosed with a blood clot in his left foot. Just another ordinary day, turned extraordinary by a set of circumstances that would turn Charlie's life upside down and inside out. Following more blood clots, pneumonia, and several unsuccessful surgeries to save his foot, he became a below-knee amputee.
Charlie recounts his hospital stay by remembering that he was visited shortly after surgery by a nurse who happened to be an amputee. She asked him if he had ever heard of the "Super Stars?" Charlie asked if they were basketball players, but soon found out differently when his peer visitor handed him a pamphlet explaining that the Super Stars was an amputee support group in the Knoxville area.
Charlie proved his independence early on while still in the hospital. He told his doctor, "I walked in and I intend to walk out," and he did exactly that. Before leaving he was fitted for a prostheses, had rehabilitation, and then walked out on two feet. But, shortly after discharge, he was feeling disgusted and uninterested in support--he called it "feeling real low." "My friends all seemed to disappear," he said, "and when I returned home to my four children and wife I felt the weight of the devastating experience of amputation; wondering if I would ever work again and how I would care for my family." Charlie said he sat around for about a month before finding the pamphlet he was given in the hospital and decided to go and see for himself what the support group was all about. There he found that seeing other amputees was really helpful and has been a member of the group ever since. The Super Stars later became known as Amputees Coming Together (ACT) and for the past 12 years Charlie has been a member of the group, serving in various administrative capacities and on the board of directors. He believes it's "the best thing I ever did in my life."
Although Charlie made his first peer visit across the hall while still a patient himself, it wasn't long before he and others from the ACT group were trained by support group member Rita Huttner in 1991; later, by former ACA CEO Mary Novotny in 1995; and most recently, by Pat Isenberg, current ACA Chief Operating Officer in 2001. Now, he and other ACT members can be found visiting in any of five Knoxville area hospitals where referrals are received from either the sites directly or through the ACA. Although visiting opportunities seem to wax and wane, Charlie remembers one day in particular when there was a rush of referrals and he made seven visits all on the same day. He estimates that he has made over 100 visits throughout the last 12 years. Charlie's wife Wilma, also visits with him from time to time and he credits her for assisting with the older population who often don't have family or anyone to rely on for support. Charlie also depends on Wilma to accompany him on visits he makes to female amputees.
When asked how being a peer visitor has changed his life, Charlie is quick to say that before he became an amputee he didn't take time out for other people, busying himself with work and providing for his family. The illness and eventual amputation "turned my life around," says Charlie. He still speaks with amazement in his voice when he talks about how being a peer visitor has helped him, saying it "really got to me -- touched me."
Charlie has fond, albeit occasionally painful, memories concerning many of his visits, saying that "sometimes I think I shouldn't get so close. But," he continues, "I do." He recalled his first official visit when a man had one really important question for him. He wanted to know if he could dance again if he lost his leg? "You can do anything you want to," Charlie told him. "It's all up to you."
Then there was the man from Kentucky who had the worst accident Charlie had ever heard of--losing all four limbs and his sight in a sawmill accident. Charlie said it wasn't easy to do that visit, but he was there to listen when the young man said to him, "I know I'm messed up pretty bad, but I think the Lord will let me have my sight back." There was a smile in Charlie's voice when he told me he had a call the next week asking him to return for another visit and found the man had regained his sight, was later fitted with four prosthetic limbs, and eventually returned to the sawmill. "Often times," says Charlie, "I might not see someone I visited for a year or two. Then I get a call from someone who reminds me of their peer visit and what it did for them." For him he says, "It's all from the heart."
This father of four and grandfather of three really didn't retire after leaving the construction field following his amputation. Aside from his support group and peer visitation service, Charlie finds time for several other worthwhile endeavors. He volunteers with the ACA in Knoxville from time to time, always ready when they call for his assistance, particularly with mailings around the time of the annual conference. Charlie also works with the amputee youth group associated with ACT, and each year organizes and chaperones, along with other amputees and professionals, 25 to 30 youths on a week long adventure at Nantahala Outdoor Center in North Carolina. The kids, ages 8 to 18, arrive from all over the United States and enjoy activities like white water rafting, tubing, water skiing, and bowling, in addition to the camaraderie and time spent with their peers. They also have an opportunity to meet and spend recreational time with the University of Tennessee football and basketball players.
Although Charlie seems to shy away from recognition, he has been acknowledged for service he has given over the years. In 2001, at the ACA conference in Orlando, he was awarded the ACA Volunteer of the Year Award. "I froze up and couldn't say anything," said Charlie. But he continued, "After I lost my leg, I got hooked on the ACA. It's fantastic--what they do for amputees." Although it took some prying, I also learned from Charlie that he was the recipient of another award, in 1995, known as the "Volunteer 8 Award." This annual service award, presented by television channel 8 in Knoxville, recognized Charlie for his volunteerism in the community. Concerning the awards, Charlie says, "They surprised me. I don't need awards to do what I do."
Charlie's volunteer efforts extend well beyond the amputee community. For example, he is well known for his work on Project Witherspoon. Named after the owner of a radioactive dumpsite in South Knoxville, the project was housing PVC's, lead, mercury, and other radioactive materials. When the mother of Charlie's wife became ill and died from cancer, he flexed his political muscle and managed not only to shut the site down, but also get it cleaned up. Add to this his work in organizing a neighborhood watch and regularly volunteering to keep five miles of the Old Knoxville Highway free of trash, and you can easily see why Charlie thinks he isn't really retired.
Even though he has a gentle manner and soft- spoken voice, I'm convinced Charlie is quite powerful in the way he affects amputees and those who care about them by how he lives. "My life has been changed for the better," he says, "but I still have a lot of things to do and places to go. I'm not finished yet." While it's safe to say that Teddy Roosevelt didn't know Charlie Underwood, I think he must have had Charlie in mind when he mused about speaking softly and carrying a big stick.
Hats off to you Charlie! You're certainly living proof that what goes around, comes around--in the best sense of that adage!
Peer Visitation Q and A Forum
Dear Kathy,
Our support group is interested in scheduling peer visitation training. Could you please let us know how to go about doing this? Who should we contact and how is this arranged? Is there a long waiting list?
Thanks.
Judy
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Dear Judy,
Peer visitation training is scheduled directly through the ACA office in Knoxville. The person coordinating training is Becky Bruce, Outreach Information Specialist. She can be reached at 888-267-5669, Ext. 8113 or at rbruce@amputee-coalition.org
The ACA schedules an average of one peer visitation class per month. The training is without charge to the sponsoring group, however, the ACA does ask that sponsorships for the cost of room space and lunch be arranged if possible. In advance of the workshop, ACA requires that at least 15 persons be registered. Information is posted on its web site and informational mailings are sent. On site, ACA asks that a volunteer coordinator arrange for set up and registration on the morning of the workshop. Also, each person attending the class will be asked to pay a $25.00 registration fee, which helps defray the costs of shipping handout materials and presenter travel. Please note that, while support groups often request and organize peer visitation training, requests may also be made by parties who are not necessarily organized as a support group, but do have an interest.
Those attending should be amputees who have successfully adjusted to life with limb loss, family members and/or significant persons in their lives, and health or medical professionals. The peer training seminar is not intended to teach interested individuals about amputation in general but is targeted to amputees who have completed their own journey through the adjustment process and are interested in helping others facing a similar situation. Thus, people with disabilities who are not amputees would not be good candidates for the ACA peer visitation training. All participants have the option to request certification at the end of training. Certification is awarded by successful completion of a written exam as well as an evaluation by the workshop presenter.
That's all it takes, Judy. And I'm sure you can see from the previous article on Charlie Underwood, that becoming a peer visitor is a worthwhile endeavor for both the giver and the receiver. The current training schedule for the remainder of the year is listed below. As you can see, there are several open dates. Good luck with arranging your training session!
Peer Visitation Training Schedule for 2002
August 17: Lenexa, Kansas - LEAPS
September 28: Houston, TX - Details to be announced
If other support group leaders or peer visitation coordinators have information, advice and/or questions to share, please forward them by email directly to Kathy Spozio at mermaid@usachoice.net.
Leadership Essay
Some Fresh Thoughts About Managing Your Group and Recruiting Volunteers
by Dick Mooney
What's wrong with this picture?
The Metropolitan Amputee Support Group is a well-established organization located in a large midwestern city. It has an active peer visitation program, monthly meetings, an information-rich newsletter, and a significant number of amputees on its mailing list. It is governed by an informal six-member "Board," consisting of three officers--a president, vice-president, treasurer--and three officers without titles. They are all amputees.
The six spend a lot of time discussing problems involving delivery of the support group's services, such as why meetings are not well attended; trying to get new projects off the ground; and trying--usually without much success--to identify someone among the group's members who might be recruited to share part of the leadership load.
The president complains that everyone on the board seems to be burned out, everything seems to be going wrong, and that she has been completely unsuccessful recruiting fresh "talent" to help keep the ship afloat.
Is this the way support groups should be managed? Should board members be the only ones who do the work? Do all board members need to be amputees? Should we look only within our groups for volunteers? In this essay, I will examine this management model in comparison with alternate models and I will advocate some new ideas for recruiting volunteer help.
Should Board People Do All the Work?
Compare "the Metropolitan model" described above with the typical "corporate model" used by most well-established commercial and not-for-profit enterprises. Simply stated, in the typical corporate model, the board members make policy and oversee the activities of the enterprise while "the work" of the enterprise is done by operational personnel who are not board members or officers.
The corporate model recognizes that governing people and operating people require different skills. Governing people, i.e., board members, must be "big picture" people and should be experienced in business and management in general. In fact, many boards are typically populated by experienced executives of other businesses. Board members can't afford to be preoccupied with operational and procedural issues, but instead must be able to concentrate on planning, policy making, and overseeing the general health of the enterprise. In short, board people must be heavy on management skills.
On the other hand, operational people need vocational skills. They must have computer skills, public relations skills, writing and publishing skills, and so on. They are not expected to be preoccupied with overall planning, policy, or general management issues but are free to concentrate on their operational jobs for which their unique skills are best suited.
This is the division of labor that characterizes the corporate model. It recognizes that governing the overall activities is work that should be done by individuals who are uniquely skilled in that kind of work, while operational work should be done by people with different skills. The Metropolitan model expects that the work of managing the enterprise and the work of the day-to-day operation of the enterprise's activities and programs will be done by the same people. Is this fair to those involved? Maybe. Maybe not. Is this a double whammy--the reason for the difficulty Metropolitan has in recruiting fresh board members and for the burnout of present members? Maybe. Maybe not. But it's certainly worth thinking about.
Do Board and Operational People Need To Be Amputees?
Typically, amputee support group boards of directors are made up of amputees who are recruited from within the group. This may be appropriate provided that they also have the requisite management skills to govern the overall enterprise effectively. Unfortunately, this is too frequently not the case. People with good management skills are hard to find. Think of how much more difficult it is to find people who have good management skills and who are also amputees. Conventional thought is that at least the board president or CEO should be an amputee, and this is probably appropriate; again, provided that an amputee with the requisite leadership and management abilities needed by a president or CEO can be found.
Some organizations have solved this problem by populating their boards of directors with management professionals and establishing advisory boards of amputees to help the non-amputee directors understand and effectively address limb loss issues and encourage them to make "correct" decisions that benefit the amputee group members. This could also work the other way around; having a board of directors made up of amputees and an advisory board populated by outside volunteers with strong management skills.
For operational jobs, amputee support group leaders also frequently recruit people from within the organization. Therefore, most, if not all of them, are amputees. But as with board members, they may or may not have the skills necessary to discharge their operational responsibilities effectively.
Is this the best way to organize and staff? Or do we follow the "typical" ways as Metropolitan has done simply because we are guilty of too much "thinking inside the box" and have not considered better, more creative ways?
Should the Search For Volunteers be Solely Focused On Group Members?
Which is more important? Should group leaders have amputations or should they have the skills necessary to best serve the leadership and management needs of the group? Is it more important to have a treasurer who has accounting skills or one who is an amputee? Is it more important to find an amputee to publish the newsletter or find a non-amputee outsider who writes and does desktop publishing for a living to do it? As observed earlier, it would be ideal to find volunteers within the organization who have both qualifications, but this so difficult as to be impossible in most cases.
So why not look outside the group for volunteers?
I find the usual way support group leaders approach the volunteer recruitment challenge is often less than effective. What is usually done is to look for a group member who might be recruited and then see if that person can be fit to a job that needs to be done. On the other hand, businesses and the best nonprofits first define the job that needs to be done, then define the skills and abilities needed to do that job effectively, and only then begin to search widely--both inside and outside the organization--for people with those skills and abilities.
How can this same thing be done by a support group? If done correctly, the process can be complicated--more complicated than can be fully explained in this essay. But I can suggest the best way is to begin. You can learn the rest through experience and other training. The important thing is to begin.
Learn all you can - Other nonprofit organizations in your area--the cancer society, the lung association, United Way, local hospitals--are very successful in recruiting volunteers from all over the community. Contact the leaders of these organizations and find out the process they use. Invite some of them to meet with your board and explain their program. Visit a library or bookstore and read about recruiting and managing volunteers. Read all you can find on the Internet.
Define your volunteer needs - Fully define the jobs that need to be done and list the skills and abilities ideal candidates will possess. Also define the time requirements and define why the job needs to be done. (This will be useful later, when "selling" the job to potential volunteers.)
Develop your recruiting strategy - This is a plan for how you will proceed to fill each job. The plan should focus on where you will look for candidates and what techniques you will use to find candidates in those places. Remember; different jobs may require different recruiting plans.
Broad-based recruitment - This is the method you may select to fill jobs that have low skill requirements, such as bringing refreshments to meetings, helping meeting attendees from their cars to the meeting room, or setting up and cleaning up the meeting place. Broad-based recruitments make use of the local media; community bulletin boards; brochures with "volunteer calls" placed in prosthetist offices, rehabilitation facilities, hospitals, and other public places; registering with local "volunteer centers" or volunteer referral agencies; and networking with local service clubs and community groups. Churches are a good places to recruit. So are clubs for retired persons and senior citizens.
Targeted recruitment - This is the method you will want to consider to fill jobs that have high skill requirements, such as database management, accounting, fund raising, or desktop publishing. Places you will target for this kind of recruitment may be large or medium-size corporations or local colleges or universities that have employees with the needed skills. Many of these organizations will have offices specializing in community relations and/or will have community involvement clubs for employees. They may also be able to refer you to enployees who have retired recently. Don't forget to contact your local bar association if you want to incorporate your group or simply want a legal viewpoint on your board.
Other sources - When searching for volunteers, don't forget to ask your board members and general members to refer you to family members, friends, neighbors, church members, and employees where they work.
Develop your "pitch" - What will you tell and provide to potential volunteers when you find them? Certainly, you will want to provide your group's brochure and any other appropriate, quality written material and you will want to tell them why the group exists and what it does. The primary reason people volunteer is because they're asked. So the way you ask is very important. You should be specific and enthusiastic (yes, even passionate) about the good your group does but you should be honest and not misrepresent the job to make it sound more exciting. Remember, there are no unimportant jobs. If a job needs to be done, that alone, makes it important.
Develop and implement your volunteer reward program - You should understand that your work doesn't end when a volunteer is successfully recruited. As I wrote in my article about how to get and keep volunteers in the August, 2000, Communicator issue, "Once they are "signed up" your job becomes one of reward, reward, and reward. You have a right to insist that they do good work but you also have the obligation to praise them when they do. People look for "psychic income" from a volunteer job. They look for a sense of belonging and identification with something that's bigger than themselves. They look for self-respect and the respect of others, and the chance to make a valuable contribution. In other words, the correct way to treat volunteers is to "pay" them regularly and lavishly with praise, respect, the opportunity to "belong," and the chance to do meaningful work that helps others and appeals to their sense of satisfaction."
What Does All This Mean?
The purpose of this essay is less to advocate revolutionary changes in the way your groups are organized and managed than it is to motivate you to think deeply about the way you are doing things and to think seriously about whether or not some of the problems you are experiencing are caused by your failure to consider different and more creative ways of doing things. Sometimes we can't solve problems by simply working harder to do things the way we always have done them. Often, chronic problems have chronic causes. Sometimes we just have to take the risk, break the mold, and adopt new and different ideas.
Dear Dee
by Dee Malchow
The Communicator has established this regular feature to help you deal with the common, and sometimes uncommon, questions you may be asked as a support group leader. We hope that Dee's expert and insightful responses to the "model" question each issue will contain will enlarge your repertoire of tools for satisfying your members' informational and support needs.
. . . . Editor
Dear Dee,
I'm trying to figure out what to do about these "ghost pains" in my foot. When I first woke up from surgery they scared me because I could see my foot was gone but it felt like it was still there. Do other people feel this? Will it go away?
Freaked Out
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Dear Freaked:
To start with, these "ghost pains" are extremely common. They are typically called phantom sensations or phantom pains and are usually experienced to some degree by over 95% of the amputee population. They often feel strongest right after surgery and tend to diminish for many people over time. Or maybe we just get used to the feeling.
The awareness of your missing foot by way of this phantom may be felt to some degree for the rest of your life. To some of us it is not a bad feeling and, in fact, it is kind of comforting. It's been 38 years since my leg amputation and I can still feel and wiggle my phantom toes!
The only people I have ever encountered without this feeling are the ones who have numbness in that extremity before surgery. Typically, this is someone with diabetes who doesn't feel their foot before the amputation due to a deterioration of the nerves called neuropathy. Recently I encountered a woman who had artificial numbness in her foot from an epidural anesthetic being placed two days before surgery. She reported that both the previous pain and the sensation of her foot were gone completely with the amputation.
The good news is that even though most people with an amputation will feel phantom sensation (a feeling that the part is still there), most have minimal or only sporadic phantom pain (a painful feeling in the missing part). The pain seems more prevalent with recent surgery, open sores, muscle fatigue, cold, illness (with fever), stress (of course), and attention. With these conditions it may last several days but often it is as short lived as the jolt one feels from hitting your "funny bone."
Once the above conditions are eliminated or minimized the phantom also is. The pain also seems lessened by warmth (bath, heating pad, etc.) and activity (gentle massage, pressure, movement of limb, walking in prosthesis, etc.). There is no medication that really eliminates this pain and certainly not one that would work for the rest of your life anyway. So it's important to learn what usually stirs up any pain and how best to work with it.
The condition of "attention" mentioned above deserves special note. This is when we focus on it. Phantom pain (in fact, all pain) seems to grow with attention. Distraction or keeping our mind off it is important but can be difficult if we are temporarily immobile or trying to sleep. People have successfully used all kinds of activities to keep their mind off of it including visiting, games, writing, reading, watching TV, and creative projects.
Living with the phantom is a workable project for most of us. It requires a little effort, some humor, and the awareness that this is a normal experience. It's just another part of the uniqueness of living with our body alteration. My phantom actually fits nicely into my prosthesis but, try as I might, I can't get those fake toes to move.
Do you have a question you would like Dee to address? If so, we invite you to ask Dee directly at deemalco@mindspring.com.
Dee Malchow, MN, RN, is a nurse case manager who is self employed and specializes in the care of amputations. She experienced a right below knee amputation at age 19 from a boating accident.
Over the past 37 years she has come into close contact with over 2500 amputees through organized skiing and soccer, mission work in Sierra Leone, research for Seattle Foot, and her position as a Clinical Nurse Specialist at the Harborview Medical Center in Seattle, a Level I Trauma Center. In 2001, she retired from Harborview after 34 years. Dee served as the facilitator for the weekly Harborview Amputee Support Group for 22 years and has taught several peer visitor training classes. She has written several related articles and is currently working on a book about the emotional impact of limb loss.
ACA News and Views
ACA Initiatives in the Coming Year
by Becky Bruce
The following programs were discussed with attendees of the Support Group Leaders Workshop at the Annual Meeting in Anaheim, California. The ACA felt it was important for support group leaders and members of support groups to be aware of the new programs that are being developed and how some of these programs rely on local amputee support groups to introduce them into schools and other sectors of the local community.
Senior Step
There are more than 1.5 million amputees in this country. More than 185,000 amputations are performed each year. More than half of the lower-extremity amputations, due to diabetes and vascular disease, are performed on people who are 65 years old or older. It is estimated that 75% of all lower extremity amputations occur in people age 65 or older.
Older adults face a multitude of problems related to amputation, such as:
Older amputees, due to declining health or cognitive status, may require lifelong care to address their functional, medical, emotional, and prosthetic needs. These care issues impact caregivers, healthcare providers, and community service providers.
Healthcare provider education, caregiver education, early intervention, and patient education could prevent or delay many of these amputations and the secondary conditions that accompany them, enhance the quality of patient care for those who undergo an amputation, and improve psychosocial and rehabilitation outcomes for amputees.
ACA is developing an outreach program targeted at older amputees, their caregivers, and service providers. Since January, 2002, ACA has identified aging, healthcare, and social service professionals who are willing to comprise a professional advisory committee, and has recruited contributing writers for this outreach program, entitled Senior Step: Information, Services and Care for the Older Amputee. A planning meeting was held at the annual conference to establish priorities and deadlines for the development of this program
ACA will develop a manual composed of the following sections:
The manual will be developed with input from members of the ACA Medical Advisory Committee, consumers, social service and long-term care providers, prosthetists, physicians, nurses, and rehabilitation professionals who specialize in the care of older amputees. The final manual will be disseminated nationwide via targeted outreach activities, including:
Selected materials from the manual will be disseminated via the ACA Web site.
Online Support Group
The biggest challenge faced by the National Peer Network is the dearth of readily accessible amputee support groups in many areas of the country. With slightly more than 260 support groups in the U.S., there is only one support group for every 5,700 people living with limb loss! The problem is not strictly a rural phenomenon, but one that affects midsize and metropolitan areas as well. A concomitant problem is the complexity of health conditions associated with limb loss that prevents many people from taking advantage of support groups in their community. A final concern is that many people are not "joiners" or are reluctant to discuss problems in a group setting.
The wellness community and others have demonstrated the effectiveness of online support groups. In fact, data indicate that an online support group can be as effective as a face-to-face support group. An online support group provides anonymity when needed, while offering people the opportunity to ask questions they might never ask in front of a group. An online support group can utilize a professional moderator who might otherwise be unavailable to many amputees. An online support group potentially offers a greater diversity in members, each of whom brings a wealth of information about coping with limb loss.
The key to the success of an online support group is in the initial planning and development, and in selecting an appropriate facilitator(s) for the group. The Medical Advisory Committee and ACA staff will develop policies and procedures for this initiative, in consultation with other organizations that have successfully implemented an online support group, prior to the selection of facilitator(s) and appropriate software and implementation of the service. Initially, the ACA will recruit one or more volunteers who have a minimum of a master's degree in psychology or social work, with two or more years as a support group facilitator, to serve as facilitators. Sessions will be monitored by ACA staff.
In 2003, ACA will implement a professionally facilitated, monthly, two-hour online support group for a maximum of 50 people. As the need for this service grows, the support group will expand to twice monthly and finally to weekly online support group meetings. As the program grows, ACA may find it necessary to provide an honorarium for the facilitators. The availability of the online support group will be publicized on the ACA Web site, in ACA publications, including inMotion and First Step, and through outreach activities.
Youth Peer Visitor Training
Through expansion of the Youth Activities Program, the need for a structured youth peer visitor program has become evident. During 2003, peer visitor materials will be adapted for youth, ages 10 to 18, with input from the Youth Advisory Board. The materials and seminar will be pilot tested in spring of 2003 and revised as necessary based upon pilot test results. A half-day youth peer visitor seminar will be conducted as an educational session at the ACA Annual Educational Conference in Boston, MA, in July, 2003, for young people interested in becoming a part of the National Peer Network. It is anticipated that the youth peer visitor training seminar will become an annual event. ACA will train a minimum of 10 peer visitors who will be added to the National Peer Network.
Limb Loss Education and Awareness Program (LLEAP)
User reception to the LLEAP curriculum has been remarkable. More than 250 copies of the field test version have been disseminated in the U.S. and Canada. The final package will be developed and disseminated to an additional 300 sites prior to the end of 2002. During 2003, LLEAP will become an educational resource for the ACA. As such, there will be no need for continuing funds to support this outreach effort.
Parents and professionals have requested the development of a preschool version of the LLEAP curriculum. We have found, however, that there are a sufficient number of awareness curricula and children's literature focused on differences, which are appropriate for this age group. At this time, therefore, this initiative is not a high priority. The ACA will provide information to parents and professionals about adapting LLEAP activities for younger children. As staff resources become available, the ACA will develop a preschool version of LLEAP.
A group of volunteers has offered to translate the LLEAP curriculum into Spanish when the ACA receives requests for a translated version.
Send address changes and membership requests to the Amputee Coalition of America (ACA), 900 East Hill Avenue, Suite 205, Knoxville, TN 37915-2566. ACA membership is $25 per year for individuals and $75 per year for Support Group Membership. The opinions and editorial viewpoints expressed in the Communicator are those of the authors and do not necessarily reflect those of the Amputee Coalition of America. This publication is partially supported by Grant No. US59/CCU41-4287-03 from the Centers for Disease Control & Prevention (CDC). Its contents do not necessarily represent the official views of the CDC. ©2000 by ACA; all rights reserved. Articles may be reprinted with proper acknowledgements unless otherwise specified by author.