Special Olympics makes health a global priority

July 25, 2015, 4:22 PM

— -- In the summer of 2004, a 22-year-old Special Olympics basketball player named Dustin Plunkett walked into a makeshift health clinic at California State University, Long Beach. Plunkett, a Long Beach native, was competing at his local chapter's summer games and taking advantage of free health screenings that have been a staple of Special Olympics since 1997.

A volunteer dentist began to evaluate Plunkett's mouth, which had not been checked in more than a decade. The last time Plunkett had seen a dentist, the doc accidentally shattered one of his teeth. He was terrified of people putting their hands and tools inside his mouth. This time the doctor assured him they weren't going to do anything but look.

Plunkett's teeth were in bad shape, but his gums were worse. The dentist, alarmed by what he saw, recommended that Plunkett pursue follow-up care immediately.

One week later, Plunkett visited a second dentist who X-rayed Plunkett's teeth. Shortly after viewing the pictures, the doctor delivered stunning news: Plunkett had gum cancer.

"They caught it in the early stage before it started to spread outside my mouth," Plunkett says. "I'm thankful for that because I didn't have to do any chemo or radiation. But they said if I would've waited a month longer, it would've spread everywhere and I would've been dead within the year."

In 100 days from now, at the Special Olympics World Games Los Angeles, Plunkett, now 33 and a full-time employee of Special Olympics, will take in an event he represents. And the Healthy Athletes program that saved his life will be on full display. Hundreds of local doctors, many of whom have never worked with an intellectually disabled patient, will evaluate up to 2,500 people per day in their given specialties, like optometry or podiatry (Special Olympics recently found that 63 percent of its athletes wear the wrong size shoe).

Plunkett is not the only Special Olympics athlete whose life has been saved by the Healthy Athletes screenings, which cover everything from eyesight to hearing to nutrition. At last year's European Games in Belgium, a doctor examined 17-year-old Vedrana Novic, a swimmer for Bosnia and Herzegovina, and discovered a potentially fatal infection in her foot. Novic's blood would have been poisoned in three days, according to Belgian podiatrist Carine Haemels. Novic is scheduled to run the 200 and 400 meters in Los Angeles.

In Turkey a few years ago, a doctor performing a routine physical on a 10-year-old girl found a hole in her heart. The resulting surgery -- free to her -- increased her life expectancy by 20 to 30 years, says Dr. Matt Holder, president of the American Academy of Developmental Medicine and Dentistry and a global health adviser to Special Olympics.

For eight days in Los Angeles, the world's largest healthcare provider for people with intellectual disabilities will churn at full speed -- behind the scenes, as always. For a handful of athletes, it will be their only chance to see a doctor this year. For others, especially those from countries where people with intellectual disabilities are treated like outcasts, it may be their first time ever seeing a doctor, period.

It has long been known that patients with intellectual disabilities worldwide don't receive the same level of healthcare, on average, as regular patients. This is due to a range of reasons, but if you talk to people who work in the field you will hear about many more "preventable bad outcomes" -- as Holder calls them -- than miracles like Plunkett's.

"Our athletes have more chronic diseases than anyone else in the general population, they get them at a younger age, and they die sooner, tragically, from those chronic diseases," Dr. Stan Shepherd, chairman of Health One Global, said in 2013 in a Special Olympics video.

It doesn't matter if you live in a first-world or third-world country. "There's no nation that I've been to or heard of that has this issue figured out entirely," Holder says. "We're still working on it here."

Special Olympics, a nonprofit organization whose public face since 1968 has been athletic competition, nonetheless has become the de facto healthcare leader in scores of countries for patients with intellectual disabilities. It serves 700,000 people in the U.S. and Canada -- and three times that number in Asia.

And it is well heeled: Last year Special Olympics International brought in more than $83 million in donations. The vast majority of Healthy Athletes' funding comes from private donors (three years ago, former Buffalo Sabres owner Tom Golisano donated $12 million through his foundation, the largest cash gift from a single donor in Special Olympics history), but various governments have also contributed millions. The Centers for Disease Control and Prevention, which has funded Special Olympics since 2002, gave $2.35 million this year for health screenings and doctor training.

"They're our boots on the ground," says Dr. Coleen Boyle, director of the CDC's National Center on Birth Defects and Developmental Disabilities.

Other governments are starting to rely on Special Olympics in a similar fashion. Last year Special Olympics Mexico worked with the government in Mexico City to train 400 dentists how to treat people with intellectual disabilities, and Special Olympics Malaysia trained caregivers at a government-run health clinic. Still, there remains a debate in some parts of the world whether the onus should fall to a nonprofit instead of the state.

The challenges stretch beyond simply providing equal healthcare. In less developed countries, stigma and cultural beliefs persist to the point of despicability. Special Olympics representatives often go house to house in rural villages seeking intellectually disabled people to recruit for health screenings -- and to educate village chiefs and their communities about the importance of inclusion and acceptance. What the doctors and volunteers see can be disturbing.

"In Malawi we found an athlete who had been tied to a tree for years," says Darcie Mersereau, vice president of health programs for Special Olympics. "We find athletes who have never actually left the house before. Because if the community finds out that this family has this child with an intellectual disability, maybe their other kids won't be able to get married. Or maybe they'll be ostracized. Or maybe they're just genuinely worried that their kid is going to get bullied or beat up or victimized, so they're protecting him by hiding him."

Those practices are slowly changing. In some countries, for instance, it has been accepted for parents to tie intellectually disabled children to beds or chairs while they went to work. The kids would remain tethered for 12 hours at a time, like dogs. Two years ago, the Ecuadorian government, for one, established a childcare subsidy to combat that custom.

Everyone involved believes the future depends largely on how well trained the medical community is to treat people with intellectual disabilities. Time was, only pediatricians received specialized training, because so many people with disabilities died young. Yet with some now living into old age, perhaps the biggest global mission is to train all kinds of specialists. It starts with communication, Holder says.

"I have heard of people who died literally from constipation," he says. "Because they were unable to express the fact that they were constipated. And they're constipated so long that their intestines rupture and they die from the ensuing infection."

Haemels, a podiatrist in Belgium, studied care for patients with intellectual disabilities and found doctors were often afraid to treat them due to their disability.

"It was a relationship problem," Haemels says. "The biggest thing is we don't take the time to listen and allow them to explain their problems. Why? Time is money. It's not polite to say it, but that's one of the reasons."

Haemels lobbied universities to incorporate specific training for patients with intellectual disabilities, which they did. Now podiatry students must complete 20 hours of course work as well as eight hours of volunteer clinical work at Special Olympics events. Similar programs have been added at medical schools in other countries, including the U.S. As of 2014, Special Olympics -- which runs Healthy Athletes clinics at major competitions as well as independently -- had trained 120,000 health care professionals how to treat people with intellectual disabilities. And every doctor who signs up to participate in Healthy Athletes screenings commits for at least three years.

Based on past World Games, this is how it will work in L.A. Each athlete has a designated time to meet with volunteer medical professionals, recruited from area hospitals, universities and private practices. Mersereau estimates about 70 percent of the athletes will actually show up and go through the seven Healthy Athletes screenings, which are called Opening Eyes, Fit Feet, Healthy Hearing, Fun Fitness, Health Promotion, Special Smiles and Med Fest.

Some of the most common fixes are also some of the most life changing.

"We have athletes who have just accepted that life is blurry," because they never knew they needed glasses, Holder says. Volunteer optometrists will prescribe lenses then let them pick out a frame -- at no charge to the athlete. "All of a sudden, for the first time, they can see clearly."

No one knows exactly what percentage of the world's population lives with intellectual disabilities, largely because so many people with intellectual disabilities are never counted. But the World Health Organization estimates it to be one to three percent, or between 70 million and 210 million people. A minute fraction of those will compete at this summer's World Games. More than pursuing medals or receiving free healthcare, their efforts, as well as those of thousands of medical professionals, will represent a simple principle, the same one that has guided Special Olympics since its inception.

It is a principle of decency, and it's epitomized by this story from Dr. Gonzalo Larrabure, director of health programs for Special Olympics Latin America and a pediatric surgeon in Lima, Peru. On a hot day in 2009, Larrabure peeked into the waiting room at the hospital where he worked. He says he saw four Down syndrome patients waiting to be helped and asked the nurse to bring them in to his office. She refused.

"I told her, 'There is a law in Peru that they have priority access to healthcare,'" Larrabure says. "And she said, 'Yeah, but if I call them first, the other 40 people will get angry.'"

Larrabure ignored her and summoned the quartet into his office himself. The hospital director later called Larrabure to reprimand him, but Larrabure refused to concede.

"The final consequence was I resigned from the hospital six months later," he says. "I told them I prefer to work with Special Olympics and make progress."