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SWAMPSCOTT — Twenty-five years ago, when Dr. Steven Perlman, a pediatric dentist, received a surprising phone call from Eunice Kennedy Shriver, he had no idea about the path his life would take.
Shriver had combed the country looking for someone who could treat her sister, Rosemary, who was having severe dental problems. Rosemary Kennedy was born intellectually disabled, and was living in a Wisconsin sanitarium. Her doctors there wanted to pull all her teeth, and Shriver, one of her two guardians (the other being Sen. Edward M. Kennedy), balked.
“That,” said Perlman, 73, “was a big deal.”
“How does the Kennedy family find a pediatric dentist 1,500 miles away to work on their sister, and then fly her to Boston to work on her?” Perlman asked.
Perlman was happy to accommodate even though that meant making sure Kennedy was healthy enough, and stable enough, to make the trip to Boston and be treated.
“I had to know she was capable of flying in, and whether she would be able to receive general anesthesia.”
Perlman, who had a thriving practice on Broad Street in Lynn at the time, said Kennedy was flown into Boston and taken to Lynn’s Union Hospital for the procedure.
“It was all done in a clandestine way,” he said. “Fake name, strict secrecy, there were Secret Service men who never left her side, and she had a nun who was assigned to her full time. She never left Rosemary’s side.”
Perlman worked on her for five hours, never having pulled a tooth.
“It was an exciting time for me,” he said.
But what came next was even more exciting — and much more meaningful.
“Eunice wanted to meet me, and thank me,” said Perlman. “Two weeks later, I got a call from the Kennedy Foundation, and I’m in a room with Eunice Kennedy Shriver and Sargent Shriver.
Now, Eunice is impressive enough,” Perlman said. “But this was R. Sargent Shriver. Founder of the Peace Corps. Ran for vice president. And here I am, in a room with them.”
Eunice Shriver wanted to talk about dental care for the intellectually disabled.
“I said to her ‘Forget that. I want to talk about health care for the intellectually disabled,” Perlman said. And so they did. He cited statistic after statistic to Kennedy Shriver, and when he was done talking with her, he said she had a revelation.
“She said ‘I’ve worked all my life to help intellectually disabled people, and I’ve never thought about their health,'” Perlman said.
“She asked me what I was going to do about it,” he said.
He said he told Kennedy Shriver that if she’d allow him to use the Special Olympics as sort of a bully pulpit he’d try his best to make sure the most vulnerable among us are treated the same, medically.
The pilot program he developed, through Boston University — where he’d gone to school — was used to work first on Special Olympians, and, eventually, the intellectually disabled.
He started slowly — at the 1993 Massachusetts Special Olympics.
“My colleagues and I at Boston University screened everyone competing,” he said. “This was the moment health care changed for people with intellectual disabilities and the beginning of Special Olympics Health Athletes.”
Along with New Jersey optometrist, Dr. Paul Berman, they teamed up to create Special Smiles and Lions Clubs International Opening Eyes, and that grew into the largest global public health organization dedicated to serving people with intellectual disabilities.
Mainly due to their efforts, Special Olympics included oral and vision health programs and screenings for athletes in the 1995 World Games in Connecticut. The results were shocking: 29 percent had untreated vision problems, 68 percent had gingivitis, 33 percent had tooth decay. Fifteen percent of the athletes were sent immediately to emergency rooms with acute pain or disease. These were athletes who were deemed healthy and fit to compete by their providers at home.
This appalled Tim Shriver, Kennedy Shriver’s son, who is chairman of the Special Olympics board of directors. And that is when the Shrivers’ committee to end health care discrimination against people with intellectual disabilities began taking shape. Since then, Special Olympics has delivered 1.7 million free health screenings to athletes in 130 countries. This is game-changing for children and adults who have typically had no access to health care, or substandard care, according to a statement by the Special Olympics board.
Based on his experience, along with what he learned from the Shrivers, the Special Olympics Healthy Athlete program has taken Perlman all around the world. And it has resulted in him getting several accolades. ESPN named him a game-changer in one of its E-60 specials.
“It is the largest public health program in the world for people with intellectual disabilities,” Perlman said. “This is my full-time job now — to increase access to health care for all such people.”
Perlman said he can remember when intellectually disabled people were still called “retarded” and that the stigma followed them around everywhere they went, including in their access to health care.
“You’d hear of people with conditions that would be treated if the patient weren’t disabled, and doctors would simply refuse to work on them due to their physical and intellectual challenges..
“We fight the battles for the parents who come to us, and who look to us to get things done to help their children who have intellectual disabilities,” he said.