JUNIOR Jocks

FROM fitness TO fun, adaptive sports SCORE big

By Maria Wolf

JESSICA GALLI, A PLUCKY, 4-FOOT-11 TEEN, HAS A VOICE LIKE WIND CHIMES, but a spirit like steel--especially when it comes to wheelchair racing. The sport has tested her tenacity and courage, a challenge Galli has repeatedly answered by medaling in local, regional and national competitions.

Racing is crucial to Galli, who does daily nine-mile training "runs," with her father biking in tow. It's hard to believe, then, that she had to be coaxed to give adapted sports a try.

"I didn't like to do new things," admits Galli, who sustained T11-12 paraplegia in a car accident six years ago. But Galli saw kids having fun at a track meet, and that sparked her interest. "I'd rather be out there than watching," she says.

Being "out there" has given Galli a confidence that belies her 13 years. "I can do anything," she says. "Just because I can't use my legs doesn't mean I can't run."

That eloquence clearly testifies to the power of sports, which transforms once-shy kids into confident competitors, who believe in themselves and their abilities.

"Sports and recreation is rehab at its best," says Andy Chasanoff, MA, CTRS, an inclusion recreation specialist in Bradenton, Fla. "Kids focus on their abilities, not their disabilities."

And every child--despite any disability--can participate. Whether a child is ambulatory or uses a powered wheelchair, there's something out there for every kid, says Cindy Housner, coordinator of Lake County Adaptive Sports, a program sponsored in cooperation with the Special Recreation Association of Central Lake County in northern Illinois.

That something includes track and field, archery, swimming, wheelchair basketball and everything in between. If you can think of a sport, there's an adaptation for it, says Chasanoff, who spent 18.5 years as a recreation therapist at Children's Specialized Hospital in Mountainside, N.J. Juniors range in age from 7 through 18, and can participate in any level of activity, from instructional meets to elite competitions.

Sports and recreation programs, indeed, bring a host of benefits. They boost fitness, wellness and psychological well-being. They also instill confidence, provide a venue for socialization and give kids a chance to have fun.

Although the benefits are numerous, therapists too often aren't getting the word out, says Bob Gailey, MSEd, PT, instructor in the physical therapy department at the University of Miami. "Therapists aren't aware of what's out there and how to get kids involved. The information is there. But therapists haven't taken the time to put it together and pass it on."

Part of the reason lies in the shifting health care arena. Shorter lengths of stay are the norm, and therapists only have so much time to accomplish rehab goals. "We don't have the kids in rehab long enough to get carry over into sports and recreation programs," says Gailey, chairperson of the APTA's Special Interest Group for Disabled Athletes. "They get discharged before they can get into a program that will give them the knowledge and ability to stay fit for life."

Many kids--and their parents--may not want to hear about sports and recreation when they're facing life-altering changes, Gailey admits. "But when they reach acceptance, they may be ready," he says. "That's why therapists absolutely need to talk about it."

He urges clinicians to give patients information about adapted sports programs (see sidebar). Although it may be piled away with a bunch of other paperwork after a rehab stay, some people eventually will read it, and act.

Getting the word out produces healthier children who become healthy adults who stay fit for life. That's good news for a taxed health care system. A side benefit, though, is ushering a new pool of young athletes into the competitive arena.

Because many young people don't know about sports programs, the United States is relying on an older group of athletes at national, international and Paralympic competitions. The "feeder" system is hobbled; quite simply, youth are not being fed from hospitals and rehab centers into local, regional and elite programs. But that needs to change.

"Junior programming is paramount to what's going to happen in the future," Gailey says. The United States needs to get good young athletes into programs to create media interest and corporate attention--two things that garner money, the crown jewel in sports programming.

Gailey describes the situation as a Catch-22. "If you don't have talented athletes, you don't have the funding," he says. "And if you don't have the funding, you don't have the programming."

Funding, therefore, is a key issue in disabled sports programs, particularly for juniors. Local, regional and national organizations get money from various sources, including grants from the United States Olympic Committee (USOC), donations from private sponsors and money from fund raisers.

But "less and less money is out there," says Dave Sams, a ski instructor for people with disabilities and an insurance broker and financial planner for Joe Hedl and Associates in Anchorage, Alaska. "Americans give a lot, but many organizations are vying for the same money."

New tax laws also make it more difficult for private companies to give contributions, Gailey says. "The touchy-feely mentality that it's good to give money has left the corporate world. It's hard for disabled sports organizations to put together a package that's inviting to corporations."

A lack of understanding also clouds corporate gift-giving. "A lot of people haven't heard about disabled sports, and they're reluctant to give," notes Tom Parragin, a teacher at the Florida School for the deaf and blind in St. Augustine and head coach of the goal ball team for the U.S. Association for Blind Athletes. "I've heard people say, 'Blind athletes. Who are you kidding? What can they do?'"

Many organization also mistakenly link disabled sports to Special Olympics, which has an established reputation but addresses a completely different population of children.

And without funds, many programs simply dry up. The AJET (Alpine Junior Elite Team) program is an example. Funded five years ago by the USOC, AJET was a three-year project designed to get youth involved in competitive alpine racing. Four camps were offered around the country each year. And the results clearly spoke for themselves: Nearly half the kids who went through the program are now on the U.S. disabled ski team, many of whom have won medals at national and international competitions, Sams says.

But funds ran out two years ago, and the program no longer exists. "Plenty of young kids would be in that program if we still had it going," Sams says wistfully.

Recognizing how crucial funding is, many people are involved in the adapted sports movement crusade for funds themselves. Sams, for example, has held board positions for Challenge Alaska, the local chapter of the national Disabled Sports USA, and has served on the executive committee of the national organization. Those distinctions more often have placed Sams in boardrooms than on ski slopes.

"It takes a lot of money to get these kids on the mountain and to keep the money coming in," says Sams, who's petitioned on Capitol Hill for funding. "I will do whatever it takes to raise money within legal and ethical limits."

Funding is also a problem for parents, most of whom have to foot the bill for traveling expenses to regional, national and international meets--expenses that mount as children climb the competitive ladder. Equipment costs also take their toll, says Housner. A new racing chair, for example, can cost anywhere from $2,500 to $3,000, with the child typically outgrowing the equipment within two to three years, she says.

Parents can't count on sponsorships either, because they're elusive. "Junior athletes wind up at the short end of the stick," Gailey says. "Corporate sponsors want big headline names. Juniors just aren't there yet." (Galli is sponsored by Action, however.)

Along with funding, accessibility can be another problem in junior sports. Unlike most youth leagues, disabled sports can't be found in every borough or township. Sometimes parents have to drive two hours to take their kids to practice, says Chasanoff. And if they have more than one child, the extra driving can wreak havoc on family schedules. In some cases, kids are forced to drop the activity altogether.

"You have to look at the parents' side of this," Gailey says. "Their quantity of parent and family time exceeds that of the siblings. They're taking the kid to the therapist and the doctor to attend his or her medical needs. Something has to go, and sometimes it's wheelchair racing."

Betsy Galli has to drive her daughter Jessica an hour each way to practice at Children's Specialized Hospital, which has a track and field team. Practices, which occur once a week, heat up from spring through fall. Betsy says it's "bearable," but it would be "impossible," if it were every day because her other daughter is involved in sports as well.

The mother of two counts herself lucky, though, that the hospital is relatively close. Some parents can't find any programs for their children, even if they're willing to drive.

"Programming is not just 'out there,'" says Isabel Bohn, executive director of the Pennsylvania Center for Adapted Sports in Philadelphia. "You really have to look for it, search around and see whether there is something to hook a child into."

And sometimes, there simply is no hook. Bohn gets calls from parents in rural Pennsylvania who are desperate for programming. But without money or volunteers, kids are left to do without.

In these cases, the impetus to create programming falls to therapists. If you're interested in getting something going, you need to determine who is interested in sports programming. If you have enough kids with the same disability, you can create a team sport. If not, you can combine groups--SCI, cerebral palsy, blind--to get everyone involved.

After assessing needs, you should then partner with the able-bodied community, Housner advises. Local facilities that have basketball and tennis courts, as well as pools, must be available to disabled sport groups, particularly if the able-bodied community uses them.

Don't try to do everything yourself, Housner stresses. "Cooperative programming is much easier than trying to do everything in-house. Tap all the resources you can."

Of those resources, volunteers are the most precious. Without them, programs simply won't exist; you need people to help run events and to coach.

Although parents, siblings, other rehab professionals and students in PT or OT schools are great volunteers, make sure you don't exhaust them, which tends to happen with fledgling sports programs. "Usually there are only three or four volunteers who pull the weight when a program begins," Bohn says. "Eventually, that changes when things start taking off. But you can't wear them out."

Launching a sports and recreation program isn't easy, she cautions. But it can be done, especially if you mainstream the program and involve siblings and parents.

Even if you can't commit to launching a program, consider volunteering, sources urge. The payoff far outweighs the effort. "If you get involved...you'll give a lot," Sams admits. "But you'll get so much more meeting these people, working with them and becoming their friends.

"It's something that's given me 10 times what I've put into it."

To reach Isabel Bohn at the Pennsylvania Center for Adapted Sports, call (215) 765-5118.

Maria Wolf is editor of ADVANCE.