Athletes who returned from the Special Olympics World Summer Games in Athens early this month brought back more than medals and memories. Those who dropped by for appointments with physical therapists conducting free FUNfitness screenings there left with a better sense of their flexibility and strength and a plan for improving their fitness level year-round.

FUNFitness, run by volunteers, is a joint venture between the American Physical Therapy Association and Special Olympics Inc. It is the PT component in the Healthy Athletes program, which includes screenings in areas such as podiatry, dentistry and audiology.

For PTs, working with people who have intellectual disabilities is a chance to serve a population that can fall through the cracks because of lack of access to medical care and negative attitudes about intellectual disabilities. People with ID tend to lose access to quality healthcare and therapeutic services in their late teens, said Jim Gleason, PT, MS, associate director at the Center for Disabilities at University of Massachusetts Medical School, and one of the founding members of FUNFitness.

“Once you leave those school services, it’s like falling off a cliff,” Gleason said. “A significant amount of people with intellectual disabilities have some amount of physical impairment, whether it’s coordination problems, weakness or balance problems.” Yet, reimbursement systems may not cover the kind of physical therapy that people need, or cover it only for a short period of time even though they need it over a lifetime, he said.

Balance, strength issues can lead to falls

Balance and strength difficulties are common among this population. Low muscle tone is prevalent among people with Down syndrome, for instance. And people with ID may have trouble walking on a balance beam, difficulty tandem walking or standing on one foot, with or without eyes open.

“One of the significant causes of injury in adults with intellectual disabilities is falls ... so falls prevention in people of all ages with intellectual disabilities is a significant goal,” Gleason said. He said 70% of people with ID taking the FUNFitness test of standing on one foot for 10 seconds with their eyes closed fail the test.

Obesity and diabetes also are prevalent among people with ID, again because of lack of access to quality medical care and outlets for physical activity, and possibly lack of understanding about how diet and exercise affect overall health. Making that connection by showing patients their progress in simple terms is key.

Research shows that obesity is higher among people living on their own and making their own food choices than those who live in a supervised setting, Gleason said. “What that tells us is those folks are in need of help in making healthier choices in their lives.”

Communication can be a challenge in working with a patient who has ID. Descriptions of exercises and handouts should include pictures, large font (14 point or larger) and simple sentence structures, said Donna Bainbridge, PT, EdD, ATC, senior global adviser for FUNFitness. “Basically it’s a cognitive impairment. So all the skills you’d use for someone with cognitive impairment, including an elder, are the skills you would use [with a patient with ID],” she said.

“You don’t talk down to them. You talk to them as adults, but in a simple fashion,” Bainbridge said. It’s also important to teach someone close to the patient, such as a coach or family member, so that person can help someone with ID follow through on exercises and lifestyle changes after sessions.

Extending the reach worldwide

About 3% of the world’s population has some level of ID, Bainbridge said. Just as degrees of impairment vary, so do attitudes and assistance. Since 2001, when FUNFitness began, close to 300 people have been trained as clinical directors worldwide and 145,000 athletes have been screened, she said.

Among those athletes, diagnoses, ability and age vary greatly. They can start at age 8, and some athletes are competing at 65 and 70 years old, said Vicki Tilley, PT, GCS, a geriatric clinical specialist in North Carolina, who helped establish FUNFitness.
Tilley, Bainbridge and Gleason are among volunteer PTs from the U.S. who made the trip to Greece to train therapists from many countries to perform screenings in their own regions. The tests are performed year-round in cities all over the world.

Through FUNFitness, PTs test athletes in four areas: flexibility, strength, balance and aerobic condition. The main goal is education but the screenings also can uncover medical problems. “In the Special Olympics population, we’re seeing problems of cardiovascular disease, high blood pressure, low bone density of athletes in their 20s and 30s that in the normal population would be kicking in at later ages,” Tilley said.

About 5% of those taking the FUNFitness test will show severe enough problems that they get referrals to PTs back home, Gleason said. But whether they follow up on those referrals is not easily tracked in an organization run by volunteers. This is a population that PTs may have never seen, particularly if they don’t have accompanying physical disabilities.

“The goal is to get them to perform better in sports and life,” Bainbridge said. “But there are benefits beyond them individually becoming more fit in terms of reducing secondary conditions, and therefore reducing health costs and getting them to be more accepted and included citizens.” •

Marcia Frellick is a freelance writer.