Win-Win Organizational Relationships

Annual Conference Shows How Amputee Support Groups and ACA Both Benefit by Scott McNutt

Cooperation between the Amputee Coalition of America (ACA) and amputee support groups across the country is a vital part of the ACA’s mission, with mutual benefits for the ACA and support groups, says Susan Tipton, ACA’s national peer network coordinator. The ACA has advocacy and informational resources, while the support groups have the direct contacts with the amputee population that the ACA serves. These combined resources result in a win-win outcome for amputees everywhere. The 2005 Annual Educational Conference & Exposition in Dallas, Texas, was an excellent example of such a win-win relationship, in this case between the Dallas Amputee Network (DAN) and the ACA.

Conference Teamwork

Each year, ACA’s conference brings together amputees and their families with healthcare providers and other industry professionals to share experiences, learn about new technologies, products and services, find solutions to common problems, and just have fun. ACA and DAN worked together in planning elements of the 2005 Dallas conference months before the conference began.

“In the past, our scholarships didn’t help as many people as we’d like,” explains Tipton. “It’s been ‘first come, first served,’ and there’s not much money.” In 2005, however, ACA worked with DAN director Ellen Fernandes to target the scholarships to amputees in the Dallas area who would otherwise be unable to attend the conference. “Because of her contacts, Ellen did all that outreach for us,” says Tipton. “She knows every amputee in the area.”

DAN members helped in many other ways. “It seemed like Ellen always had 20 people from her group working the conference hospitality booth along with her,” says Tipton. “And the first day, preconference, there was a support group leader’s workshop for current leaders and for people who wanted to start a group. Approximately 40 people who attended that workshop on Wednesday were able to go to DAN’s table and see what a support group that functions really well is like.”

“We also organized three outside events,” Fernandes says. “A music and comedy show at the Hard Rock Café with free shuttle service, a barbecue dinner with free disc golf instruction and practice, and the World’s First Amputee Disc Golf Tournament with prizes donated by area merchants. In addition, Ken O’Grady, a below-knee amputee, one of our charter members, and a tri-athlete and fitness instructor for many years, conducted several exercise classes during the conference.”

The level of attendance at O’Grady’s classes may have been the only disappointing aspect of the conference. “I try to get amputees to work out and exercise to the ability that they can participate in it,” says O’Grady. “I tell them, ‘Take the “dis” out of disability, put one foot in front of the other, and do the best that God gave you the ability to do.’ We had a company bring in selected pieces of equipment, a couple of treadmills, a spin bike, and we demonstrated how an amputee can use this equipment. Unfortunately, the fitness classes were not well-attended, at least not as much as we would like.”

Nevertheless, O’Grady sees great benefit in attending the annual conferences. “It’s good because ACA brings together the vendors, the manufacturers, and the trained people who will sit down with the amputees and discuss with them a particular difficulty or problem they may have and show them how their particular piece of equipment would work,” he says. “So people got exposure to lots of different products.”

DAN member Debbie Berger, a recent below-knee amputee and first-time conference attendee, agrees with O’Grady’s assessment. “That was huge for me because I’ve only had this one leg,” she says. “So I didn’t know what other things are out there. They had the products, and you were able to see people wearing them. It was really ‘touch ’em, feel ’em, here are the pros and cons.’”

While Berger says that the conference’s gait training clinic probably had the largest impact on her, she observes that another important facet of the conference was the opportunity to socialize. “It was very exciting,” she says. “I was doing a whole bunch of things I hadn’t really thought about being able to do again, having been injured for six years and unable to walk. And then that night I was doing the two-step with my prosthetic leg. It was amazing. But I don’t know if I would have tried doing it, had it not been such a comfortable environment with other people in the same situation.”

Give and Take

Helping find or create comfortable environments in which amputees can share information and experiences and simply relax without feeling self-conscious is one reason support groups come together. ACA tries to help support groups accomplish this through a variety of means.

Promoting Amputee Life Skills (PALS), a research study sponsored by the Centers for Disease Control and Prevention (CDC), was conducted by Johns Hopkins Bloomberg School of Public Health and the ACA through a nationwide network of amputee support groups. Its purpose was to evaluate a self-management program for amputees. “It was the only way we could do the research, because support groups are where you make contact with new amputees,” Tipton explains. “That’s one area where give and take takes place, definitely.”

ACA also sends out a monthly News Brief to amputee support groups, lists all support groups on its Web site, and provides many online articles about support groups through the National Limb Loss Information Center. The ACA also offers a real-time, professionally facilitated online support group just for amputees. ACA currently has 11 volunteer regional representatives located throughout the U.S. These experienced support group leaders keep in touch with the support groups in their respective regions. They also monitor formation of new groups and special group activities in their region.

In spite of the support and resources that ACA provides to amputee support groups, Tipton regrets that the scope of assistance ACA can offer to newly forming groups is still somewhat limited. “Hopefully, as our membership grows over time, we’ll be able to offer more assistance,” she says.

“We offer a packet of information on how to start a support group,” Tipton explains. “No matter what kind of group it is, there are basic steps you need to take. That’s free, and it’s enough to get a group off the ground. And they can call us and have someone to talk to about starting a group.”

Tipton notes that for support groups willing to buy a $75 group membership, a large, in-depth manual (currently being updated) is available. It includes information on achieving nonprofit status, advice on setting up a board of directors, and other related topics. “For a support group that doesn’t have that kind of money, we offer a free one-year membership,” Tipton adds. “That won’t include the manual, but it does include more copies of inMotion.”

Knowledge Gained, Friendships Formed

For Tipton, the support group leader workshop held the day before each annual conference is still the best means of educating and informing amputees about how to create their own group. “I get questions all the time. ‘How do you lead a support group? What do you do? What’s the best way to do it?’” she says. “At the conference, I send people to somebody who has been doing it a long time, like Ellen. What better way for people to see how a group works than to see one, live and in person, like DAN, that is so successful? They can see DAN’s brochure and their newsletter; they’ve got an outstanding newsletter.”

Debbie Berger agrees. “I think it’s motivating to amputees from other areas of the country to see this is really how a large group is, how close we are, the activities that we do. I think it encourages people to keep trying to get those support groups set up.”

And for DAN, the conference was a chance to attract more members. “Two people I spoke with at the DAN table actually came to the DAN meetings and were really encouraged by it,” says Berger.

Perhaps the win-win nature of the relationship between ACA and amputee support groups is best summed up by a passage from DAN’s newsletter written the month after the 2005 conference by Ellen Fernandes:

“It’s amazing to be in a place where people with all limbs are in the minority, and no matter what kind of amputee you encounter, there’s always a smile and an unspoken bond that brings us together. … It was great to meet people we only knew from phone conversations or e-mails, and even though it was exhausting, it was sad to see it end when everyone left. The knowledge gained and the new friendships formed made this an unforgettable weekend for us all. We look forward to the next ACA Conference in Minnesota in June 2006.”

To find out more about the mobility equipment, wheelchair vans and other solutions offered by United Access, visit http://www.UnitedAccess.com. 

About United Access: United Access has been providing the latest in adapted vehicles, driving systems and services for over 30 years. They are a member of the National Mobility Equipment Dealers Association and a nationally accredited Quality Assurance Program (QAP) dealer with nine locations across the Central United States. They are committed to giving back to the communities they serve through volunteer time, event sponsorships and donations.