On July 1st, 1995, the world’s spotlight shone upon Yale’s football stadium in New Haven, Connecticut. It was the latest Special Olympics World Games, and the organizers had lined up big-name musicians like Hootie & the Blowfish and Boyz II Men for the opening ceremony. United States President Bill Clinton and First Lady Hillary Clinton even made an appearance.
Lost in the fanfare was a grim reality, however: one in six athletes had to be sent to the emergency room.
“We had a [15%] referral rate to the ER for significant oral disease with acute pain,” said Tim Shriver, chairman of the board for Special Olympics. “These are people coming off the track just finishing their soccer game.”
The organizers sussed out the health problems because they were just piloting a new program called Healthy Athletes. In the decades since the first Special Olympics in 1968, the organizers had witnessed the lack of health care options afforded to their athletes with intellectual and developmental disabilities. To remedy the situation, they brought doctors to the stadium to perform routine exams — including vision, hearing, and dental screenings — and found long-overlooked maladies.
“And these are the people who had been the closest to health care systems!” said Shriver. “The data was shocking. We had to do something.”
Healthy Athletes kick-started an ongoing effort in the United States to provide health care to people with intellectual and developmental disabilities. Thirty years later, health data on this oft-ignored population remains scant or conflicting. The best estimate on the population’s size — 7.5 million in 2019 — relies upon data from former President Bill Clinton’s first term. And state agencies are only aware of one in five people with such disabilities in their states, a 2019 study found.
The missing data can impact the quality of care, or put lives at risk. During the pandemic, people with these disabilities were 2.6 times more likely to die from Covid-19 than people without one, but the data gap complicated public health researchers’ attempts to address this disparity. A 2024 report detailed health care providers’ struggle to adequately care for the mental health needs of this population. A 2011 World Health Organization report demonstrated how this care gap could lead to higher rates of chronic diseases.
“It creates this bottleneck of continuing to perpetuate these disparities that are experienced,” said Anjali Forber-Pratt, disability activist and director of research at the American Association on Health & Disability.
Reports from public health officials in recent years have made this community’s health needs more visible. But people with intellectual and developmental disabilities say health systems are still discounting their pain.
“There’s still so many barriers that we’re facing that we’re trying to overcome, and the only way we can overcome this is by advocating for ourselves to people who are willing to listen,” said Dustin Plunkett, a local Special Olympics recruiter in Long Beach, California.
Born with an intellectual disability and a cleft palate, Plunkett joined Special Olympics at 14. His personal health journey over the last few decades is indicative of many Special Olympics athletes and illustrates how circumstances have changed both for the organization and for people with disabilities in recent years.
Though the organization formally launched the Healthy Athletes program in 1997, it did not spread to Southern California until 2004, when Plunkett was 23. His coach came up to him one day, asking if he was in pain — his cheeks were extremely swollen. Plunkett has a high pain tolerance, but he had also avoided thinking about oral pain or going to the dentist ever since he received a very painful root canal as a child.
Soon after, Plunkett got an informal dental checkup through Healthy Athletes, but the dentist quickly set up an appointment for him to see a dentist and get X-rays.
After getting the X-rays, “the dentist told me, ‘Brace yourself. I got some bad news for you,’ said Plunkett. “He tells me that I have gum cancer in the upper left side of my mouth. And if it would have just went one more month longer, I wouldn’t be alive today.”
As Plunkett received life-changing dental care, the country’s attitudes toward people with intellectual or developmental disabilities were shifting. In 2000, U.S. Congress passed the Developmental Disabilities Assistance and Bill of Rights Act of 2000, which codified rights and authorized Protection & Advocacy systems, setting up independent watchdog groups to advocate for people with disabilities in each state.
A year later, during the 2001 Special Olympics World Winter Games, the United States Senate Appropriations Committee organized a special hearing in Anchorage, Alaska. Senators and Surgeon General David Satcher listened to athletes and their families speak about the realities of living with an intellectual or developmental disability and the discrimination they faced when seeking adequate health care.
Satcher released a report the following year that provided a blueprint on how to improve outcomes for people with intellectual and developmental disabilities — conduct more research on health outcomes, provide more comprehensive training for health professionals, and make it easier for this population to get insurance. The report piqued the interest of groups across the health care spectrum, including insurance companies.
“This is a pretty costly population, so if you can improve their care and reduce the need for more extensive procedures like hospitalizations, everybody gains,” said Gloria Krahn, a disability research consultant.
While the problems gained more attention through this report, not much changed functionally in subsequent years. When Krahn started working at the Centers for Disease Control and Prevention in 2008, she brought together other researchers to identify what could be done. The group soon realized the paucity of demographic data on people with intellectual and developmental disability was a real hindrance for providing better care, especially after the passage of the Affordable Care Act. The law mandates disability data collection, alongside race and ethnicity data. But the federal government has not enforced this collection, much to Bonnie Swenor’s chagrin.
“This is where I think we can do something,” said Swenor, founder and director of the Johns Hopkins Disability Health Research Center. “It is in the ACA policy but people are ignoring it. The questions are not perfect, they are missing large groups of people, but this should be the standard.”
This push is part of a broader movement to improve disability representation. Activists recently pushed back against the Census Bureau’s proposed changes that would have further worsened data quality and dramatically undercounted people with disabilities.
In 2017, the Administration for Community Living convened a group of people to develop a road map for better care for people with intellectual and developmental disabilities by 2030. This initiative, I/DD Counts, aims to improve data collection and help the U.S. catch up to other countries such as Ireland and Australia with more robust research and better health outcomes, according to Krahn, one of the group’s leaders.
“Their reduced quality of life is unnecessary, their earlier mortality is preventable,” she said. “Those are the big indicators of the health of a country, but this population is not being recognized and these issues are not being seen.”
The ultimate goal is to empower more people with intellectual and developmental disabilities involved in their own care. When Plunkett broke his hip last year, he spent a lot of time receiving medical care. But his experience was drastically different compared to when he was younger.
“I was able to advocate for myself there in the hospital saying, ‘Hey, I feel this is wrong, I’m feeling a lot of pain, I need morphine or something to handle the pain,’ said Plunkett. “I was able to talk and communicate with my doctors more than I ever had before in my entire life. And that’s all thanks to learning how to advocate for myself.”