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Challenges with telehealth persist for Deaf patients and others

Posted at 3:26 PM, Feb 14, 2024

For a lot of people, scheduling a telehealth appointment with their doctor takes two seconds. You just go to your provider's app and with a couple of finger taps, you're good to go. That's not always the experience for those with disabilities.

"One of the provider's platforms didn't have any captioning and there was no ability to add in an interpreter so I couldn't add a third person on the screen like we're having right now. So, it's not just barriers, it's that it's literally impossible to use that platform for me," said Jessica Kennedy, president of the advocacy organization DeafHealth.

With help from an interpreter during our video interview, Kennedy explained what it's like as a Deaf person simply trying to see a doctor. She said one of her appointments was canceled because the doctor didn't know how to call through a video relay service.

Maria Wilson, Chief Legal Counsel and Board Secretary for Communication Service for the Deaf, Inc. (CSD) has had similar experiences.

"As a Deaf patient, my first telehealth experience was a nightmare. For most people, it would be a routine eye infection during the holidays. But for me, there was no caption feature or chat box to communicate with the provider and no provision of an ASL interpreter on the screen. Additionally, there was no information going into the appointment about whether these features would be available, and I was unsure what to expect. The doctor closed the appointment almost as soon as opening it and then listed me as missing the appointment. There was no way for me to message or communicate with the doctor. I had to call customer service via video relay services, and I eventually got a second appointment. Still, the whole ordeal took over an hour, and then the second appointment only lasted 5 minutes. Being hung up on like that and unable to fully participate with my doctor was demeaning. What happened to me is a very common experience for deaf and hard of hearing individuals seeking telehealth services and a large reason why we avoid it."

There are a couple of proposed federal rules that may help address these barriers.

One is from the U.S. Department of Health and Human Services' Office for Civil Rights (OCR). It calls for new requirements that would prohibit discrimination in medical treatment - including the use of web and mobile accessibility.

Click here to read DeafHealth's response to the OCR proposal.

Another from the Department of Justice would add more specific requirements about web and mobile app accessibility so those with disabilities have equal access to government services.

"I find it's like the two-step rule, someone, a patient will try twice and if it doesn't work both times, people often give up," said Caitlin Donovan with the Patient Advocate Foundation, an organization addressing this accessibility issue in healthcare.

"They need help accessing those basic services, knowing what they qualify for and having somebody help them get there."

If these federal rules become finalized, Kennedy is eager to see how they will be enforced.

"People who use ASL, American Sign Language, as compared to hearing individuals, we are 97% more likely to visit the emergency room - 97% more likely. It's ridiculously high and the reason is, we go to routine doctor's appointments like telehealth, and they're not accessible for us. They don't work for us."

"Healthcare, I would argue, is a human right. And setting that as a standard and recognizing that as a standard is so crucial."