July marked 30 years since President Bush signed the Americans with Disabilities Act into law. And while the U.S. has come far since then, the nation still has a long way to go when it comes to achieving health equity. The current public health crisis of COVID-19 has only exacerbated existing inequities for people with disabilities.
Side Effects community engagement specialist Brittani Howell convened a conversion with Dr. Mary Ciccarelli, a clinical medicine and pediatrics professor at the Indiana University School of Medicine; Anastasia Helmich, Special Olympian and United Fitness Club leader; and Kevin Callaghan, Special Olympics athlete representative from Cass County.
You can watch the discussion here, or you can read a summary below.
What does the Americans with Disabilities Act try to guarantee for people with disabilities in terms of health and healthcare access? How well is the U.S. doing in meeting those goals?
The ADA requires that health care entities provide full and equal access for people with disabilities. That means they must modify or change policies, practices, and procedures to ensure equal access; to ensure that communication with patients with hearing, vision, and speech disabilities are as effective as communication with other patients; and to make sure their facilities and medical equipment are accessible to patients who use wheelchairs or have other mobility concerns.
The U.S. has come far in the last 30 years when it comes to meeting those goals. But it still has a ways to go, Ciccarelli said.
“I think that for each of those topics, we now meet the letter of the law in most facilities,” she said. “But there is some depth to that letter of the law in terms of really making the right modifications, communication and accessibility to all different types of disabilities and people who need individually different accommodations.”
In general, people with disabilities are less likely to have access to care, whether because of transportation, physical accommodations at the doctor’s office, cost or a combination of factors. That can lead to them delaying routine procedures like yearly physicals or dental cleanings, which has consequences down the line. They are more likely to experience comorbidities like obesity, diabetes, heart disease and hypertension, and are more likely to smoke. In general, a person with a disability is more likely to die earlier than a person without a disability.
Health insurance poses its own challenges: Helmich said it wasn’t easy finding a new dentist office that would take her medical insurance. When she aged out of her parents’ coverage through the Affordable Care Act, the office she had gone to for years would not take her new insurance.
“A lot of people don't take certain kind of insurance and serve a certain kind of plan,” Helmich said. She ended up calling her old dentist and asking for a recommendation. “It's just harder. There needs to be some sort of a list for people.”
Are these inequities the same across all disabilities?
It’s hard to say.
“When I think about disabilities, I think about individuals who have limits on their ability to participate,” Ciccarelli said. That can range from motor disabilities, to sensory deprivation, to intellectual and developmental disabilities.
In short, the term “disability” encompasses a huge array and variety of conditions, and limitations on their access and experience of healthcare aren’t necessarily the same across those different kinds of disability.
“Interestingly, for example, people with intellectual disabilities don't tend to have as much respiratory disease as other people with other disabilities because in general, people with intellectual disabilities don't smoke as much as people with other types of disabilities,” Ciccarelli said.
However, in the U.S., data on just how different those disparities might be among different kinds of disabilities is hard to come by. By and large, on the national level, the U.S. studies disabilities as a collective whole rather than breaking down analysis by different kinds of disability.
“In a very crude and general way, it's countries that have national health service programs. They do a better job of both analyzing the data and building programs around the data,” Ciccarelli said. “We need that: We need a better system of population health to help us with that, better research, better real-time information that helps us adapt and change."
What can be done to address these disparities?
Communication and education are two big pieces of the puzzle, Ciccarelli said. Doctors often don’t get good training on how to work with people with disabilities in their general practice. Helmich, who has a developmental disability that requires more time to process information, often has her mother come to the doctor’s office with her. And many times, she’s had doctors talk to her mother as though Helmich isn’t there.
“I just felt like I was a sitting duck in the room,” she said. “I felt like they weren’t really wanting to know my questions. They were just wanting to know the answers. They were just rushing through it so they can move on to the next patient.”
The COVID-19 pandemic has only made this more complicated. Because of restrictions, Helmich’s mother could not accompany her to a recent visit, and Helmich didn’t know how to answer some of the doctor’s questions. It was a frustrating experience, she said.
To help with that education piece, the Indiana University School of Medicine launched a curriculum that builds disabilities-centric education into the four-year medical school program. The American Academy of Developmental Medicine and Dentistry and other medical education facilities are working on similar projects.
Caregivers require more education too, when they’re caring for people who can’t necessarily articulate when something is wrong.
And the need for clear communication isn’t limited to the doctor’s office.
“I think that persons with disabilities need the appropriate education about their own health, delivered in a manner that they can understand and use,” Ciccarelli said. She pointed to smoking cessation programs or diabetes education programs, as examples. Additionally: “They need information on specific conditions that they have and specific vulnerabilities they have.”
Helmich and Callaghan are both health messengers with the Special Olympics. Not only have they received some of that education through the organization, but now they advocate for other athletes and sometimes carry out that education themselves. Helmich leads a fitness club for her peers and builds in education about healthy eating, hydration and the importance of exercise.
Where does COVID-19 fit in?
Because of the pandemic, Helmich’s fitness group has been moved entirely online. In addition to leading exercises her group members can do from home, Helmich talks to her peers about the coronavirus.
“We talk about washing hands, we talk about when you go out to a restaurant or you go out to public you need to wear a mask,” she said. Some of her peers with intellectual or developmental disabilities don’t understand what they see and hear on the news, she said. “Some of them don't get it. They want to be social with their friends. They want to be able to do like everybody else. So, I talk about all the health risks that they're going to take when they go into public.”
Some of her peers still live at home because of their disabilities and worry that they’ll endanger their older parents by going out or even going to work. And others are worried about how their preexisting health conditions could result in more severe cases of COVID, if they were to catch it themselves.
Anxiety occurs at a higher rate among people with disabilities, Ciccarelli said. That’s only being compounded by the pandemic. Additionally, the pandemic has caused many providers to suspend certain services, including those that specifically benefit the disabled community.
“If you had usual physical therapy, occupational therapy, speech therapy, behavioral therapy, and you're not getting that for this long a period of time, you're going to start to lose some of the gains you were getting out of those therapies,” she said. Some people have turned to telehealth services to bridge the gap, but telehealth doesn’t work for everyone.
“Some people have trouble interacting and responding to someone talking through a computer screen,” she said. Additionally: “We know that people with disabilities are less likely to have internet access. So, then how do you even get to your telehealth appointment if you can’t find internet?”
This story was produced by Side Effects Public Media, a news collaborative covering public health. It is part of the Move to Include Initiative funded by the Corporation for Public Broadcasting. It focuses on people with disabilities and the issues they face.