Challenging healthcare and winning at Special Olympics' Wellness Park.

Imagine a place full of games, prizes and healthcare providers who take the time to listen and are trained in how to treat and care for individuals with special needs. At this helpful, supportive place, children and adults with developmental disabilities can get their hearing and vision tested, receive free glasses, have a full dental work-up, oral motor and speech exam, and see doctors, trained physical therapists, orthopedists, physical trainers, information for follow-up, referrals to local providers, and a bag of goodies to take home. Sounds too good to be true, but it's not. It happens each year at Special Olympics New Jersey's Wellness Park.

"Wellness Park is a great thing," says Kristen Clark, Special Olympics (SO) champion gymnast and figure skater. "It is very important for SO athletes, it helps them know what they are capable of and what they can do. They need to know how bad their hearing or eyes are so they can test them--and about nutrition and how well they are eating."

Kristen's figure skating partner, Michael Ferraioli, agrees. "I love going to the doctors there. They told us in the dental tent how to take care of our teeth." Michael and his mother were both surprised when, following his eye exam, Michael received free glasses right there. For Michael, the best part was the goggles that came with the glasses. "I wear those goggles for softball and tennis," he exclaims. "I always use those goggles."

Kristen and Michael know that in order to skate their best, they must see well, hear well, and feel good. As with any athlete, their good health is essential for successful participation in training and competition. "The Sports and Wellness Park is one of our best efforts aimed at addressing the needs of the whole person," states Marc Edenzon, President and CEO of Special Olympics New Jersey. "By looking at the athletes' total well-being, we can help them understand the many factors that contribute to a healthy body, spirit, and mind."

"We see our athletes as individuals with complex lives, with sports being one component," Edenzon explains. "We understand that the athletes and their families are facing a number of difficult challenges related to meeting their health, education, recreation, and self-fulfillment needs. Although sport will always be the primary focus for Special Olympics, we now see the importance of addressing other factors that contribute to an athlete's readiness to succeed in training and competition."

Wellness Park is part of Special Olympics, Inc.'s (SOI) Healthy Athletes Program, a far-reaching effort that is doing much more than just improving the health and fitness of SO athletes. By offering registered athletes opportunities to see a wide variety of healthcare providers, free of charge, SOI is increasing access to healthcare for athletes, and others who attend the Games. In addition, SOI provides intensive training sessions for the physicians and students who participate, which is leading to an increased number of healthcare providers who are comfortable and qualified to care for people with MR and developmental disabilities.

Kristen Clark's mother, Pat, believes that these opportunities are invaluable. "It alerts you to the fact that your child has a need you might not be cognizant of, because they don't complain. They don't always know when something is off. I know a mother of an athlete who took her son to the audiologist at Wellness Park and found out that he had a 90 percent hearing loss in one ear. She had no awareness [of it]. Even when you think you are on top of it, you just can't keep up. It is so much to manage." Chris Aveson, Mother of 22- year-old SONJ athlete James Aveson, echoes this concern. "Right now we think James has a hearing problem, but I don't know, he can't tell me. He shouts a lot. He has his headphones on all the time and they are very loud."

What Clark and other parents find most incredible about the Park, are probably things that the general population takes for granted when they go to the doctor. According to a recent SOI study, there simply are not enough doctors who are trained and committed to caring for this population. "Kristen really needed glasses, so we went to the clinic," says Clark. "I was overwhelmed by the talent, the caring people, the way they related to the athletes. I've seen athletes there who, it was obvious, had never had an eye examination and they were frightened by the whole process. The doctors were patient and wonderful, they genuinely seemed interested in the athletes. It was a great feeling." Margaret Ferraioli, Michael's mother, was most impressed with the respect the doctors gave to her son. "They spoke to him like an adult," she said.

Like other young adults with MR, the athletes know all too well about doctors who cannot deal with individuals with special needs. Kristen remembers vividly the day her usual eye doctor brought in a new doctor and failed to take the time to introduce him to her. "My doctor is very sweet, kind and gentle, but he didn't realize I was nervous seeing this new doctor. I didn't know he wanted me to take an eye test. No one told me. I was scared. They wanted to dilate my eyes and I wasn't sure he could do it. It's hard for me to trust someone I don't know." Kristen never felt that fear with Dr. Meyer in the eye tent at Wellness Park. "He was perfect! He said I had this lazy eye. He checked it out. He put a lot of stuff in the eye. But he told me what he was doing."

Parents of individuals with MR have lived through the many experiences documented in the SOI report, "Promoting Health for Individuals with Mental Retardation--A Critical Journey Barely Begun." They know that doctors that are great with the general population, can often be a disaster for those with special needs. Chris Aveson recalls a disturbing visit to their family eye doctor. "We knew James needed an eye exam so we took him to our doctor. We thought he was great, but it was so different with James. He took one look at him and said, 'I can't test him, he won't sit still long enough.' I found another doctor through a friend who took kids with special needs and he has been going to her ever since, he is great with her."

These families have also witnessed the obstacles to quality care that are created by managed care and Medicaid. "Getting referrals is very important," says Margaret Ferraioli. "People on Medicaid have such limited access, I don't know any doctors who take Medicaid." Chris Aveson sees what doctors are up against. "With managed care, even regular patients get rushed. Our kids need doctors who can carefully look and listen. They have to ask the right questions and take the time. They can't just make assumptions."

One might surmise that there is something complex and clinical that makes a doctor qualified to deal with individuals with special needs. According to the athletes and their parents, it is something quite simple. "When I went to visit Dr. Meyer in his office, he welcomed me," explained Kristen. "But it was different, he made me feel welcome in his heart." In general, the families see the greatest barrier to getting quality care to be the physicians' inability to communicate with the patients with MR. "They will talk," says Mrs. Aveson, "if they are comfortable."

Kristen Clark believes that all parents, even those of young children with developmental disabilities should come to Wellness Park. For families of children 0 to 6, SONJ offers its Family Connections Conference, which includes a full day of meetings with experts and other families and free passage to Wellness Park and the Games. Kristen wants parents to know that "you have to make sure that everything works right so the child can learn and progress. If, for some reason, an athlete has trouble with their eyesight or hearing, something they were born with, if they go to Wellness Park, they will find out what is going on, then the parents will know how they could help. Being well gives us the opportunity to learn. It is devastating to the parents and the child when the child cannot learn. It is upsetting if you cannot see progress."

As for Kristen, there's plenty of progress. She recently participated in an SOI exhibition in conjunction with the United States Gymnastics Foundation, in Philadelphia, and is currently waiting to hear about a new job at the Somerset Hills YMCA. "I am the Assistant to the Pre-school Gymnastics Director now and I am waiting to see if I get an office position. Special Olympics helps me so much. I can show these kids what can be accomplished by an SO athlete. When I teach gymnastics they learn gymnastics from me, but they also learn what I can do. I think some parents are afraid to let their kids take lessons from me. I can show them what I am capable of, that I can keep their kids safe."

An objective observer can see the overwhelming pride these parents have in their children and their achievements. "Special Olympics has meant a lot to us," says Aveson. "It is the one place where your child can shine." Clark seconds that. As for Wellness Park, she says, "It is a real boon. Sometimes it's hard to survive and this is a Godsend." This positive feedback is great news for Special Olympics New Jersey. During the 2002 season, SONJ plans to locate a Wellness Park at each of the four state final competitions. Come visit and see how pleasant healthcare can be for kids and adults with special needs.

Susan Carucio Colacello is a freelance writer based in New Jersey.

RELATED ARTICLE: Health report available.

A recent report commissioned by Special Olympics International on the "Health Status and Needs of Individuals with Mental Retardation" supports the concerns raised in this article. Findings from the report stress that, "even in situations where people with mental retardation experience similar levels of disease to people without mental retardation, access to timely and appropriate healthcare is often not adequate and generally poorer than for the overall population. The majority of healthcare professionals, who are otherwise qualified to treat people with mental retardation, fail to do so. This is largely the result of a lack of appropriate, specific training; inadequate reimbursement policies; fear and prejudice." For a copy of this report please contact Special Olympics International at: 1325 G St., NW, STE. 500, Washington, D.C. 20005. Phone: [phone] log on at: http://www.specialolympics.org, and click on "Unprecedented Health Report."

RELATED ARTICLE: Special smiles.

The Healthy Athletes Program was launched in 1996, by Special Olympics Inc. in Washington D.C. in response to reports by coaches and volunteers, that athletes could not see or hear well, would tire easily or would have pain and not know why. Although the main goal of the program is to increase athletes ability to train and compete, the program's objectives include increasing access to healthcare for athletes; making referrals; training healthcare providers and students about the needs and care of people with MR; and advocating for improved health policies and programs. Dr. Martin Giniger of the University of Medicine and Dentistry of New Jersey, has been involved in the Special Olympics, Special Smiles program since 1997. He explains that one of the primary goals of the Special Smiles program is to increase the number of dentists who will serve people with mental retardation. This is done by encouraging practicing dentists and students to volunteer to conduct screenings at Special Smiles events like Wellness Park. Those who participate receive training and continuing education credits. "It is a wonderful way to break down the barriers that too often prevent dental care professionals from working with this population," says Dr. Giniger. "We find that most dentists leave with a much greater appreciation of the problems these people face. Research has also demonstrated that those who are involved with the Special Olympics Special Smiles program are more likely to accept persons with disabilities into their practice."