Dr. Bonnielin Swenor, associate professor at the Johns Hopkins School of Medicine and director of the Johns Hopkins Center on Aging and Health, was recently exposed to someone who was diagnosed with the coronavirus. Swenor wanted to get tested after displaying mild symptoms of Covid-19. Her children, a 3- and a 6-year-old, both have asthma. But there was another health problem that made testing difficult.
In 2005 Swenor was medically diagnosed with myopic macular degeneration from a degenerative retinal disease. Because of her low vision, she struggled with navigating information related to the coronavirus and getting to a testing site.
With a severe shortage of tests nationwide, at-home testing has not been a realistic option. Swenor's condition prevents her from driving herself to a testing site and her children are not old enough to stay home alone. She had three options: Invite someone into her home to watch her children, confine everyone into a car together to go to a testing site or do not get tested. The first two options were not risks that Swenor was willing to take, so she decided to avoid testing and hope her symptoms did not get worse.
Swenor is among many members of the disabled community facing unique obstacles in accessing health care, testing sites and critical information during the pandemic. Many have decided to avoid testing and hope their symptoms do not get worse. Swenor knows more than most about the magnitude of these challenges. She authored a 2013 study that estimated a population of more than 5 million Americans 20 years and older with vision loss, over 30 million with hearing loss, and approximately 1.5 million with both vision and hearing loss.
Access to health care and public health information play a crucial role in how Americans react and mitigate the stress of the coronavirus, but many people with varying levels of hearing and vision loss say they are being left without good options.
"Disability has far been not considered in public health emergency response planning or preparedness. It's not coming from preparation; it's coming from reactions," Swenor said.
More health-care providers are expanding virtual services to protect themselves and patients from possible exposure to the virus, but people with sight and hearing impairments are frustrated with significant barriers to access the new technology. Many individuals in the deafblind community, specifically, say they cannot use these services without assistance.
The World Federation of the DeafBlind defines deafblindness as a "dual sensory (sight and hearing) impairment, with a consequential loss of the ability to communicate with the surroundings without assistance, and the mobility to move freely around without assistance."
A Seattle resident who is deafblind scheduled an appointment using telehealth services through Virginia Mason Medical Center. She says that her appointment would not have been possible without her daughter's help. Her daughter had to log into the virtual waiting room, adjust the camera angle, and figure out how to enable captions on Zoom. Later they found out that captions were not available.
When the doctor appeared in the virtual waiting room, the deafblind patient asked how to enable captions, but the doctor said he did not know because she was the first patient using the service who needed it.
"I honestly don't know how other deafblind people are doing this. It just does not seem possible without help. Nothing is compatible with captions or a Braille display, and there are no words to even get on a display, since it's all in voice," she said.
Many deafblind individuals who are part of a Facebook resource group for the community say they have not gotten tested because they do not have transportation and they are afraid hospitals may not have the proper resources to help them.
As a result of the pandemic, most hospitals do not allow anyone to accompany a patient during appointments, which creates even more challenges for those who are deafblind and need assistance. Some hospitals have video-remote interpreters when no interpreters are available, but many patients who are deafblind cannot see the screen, so they need someone to communicate using pro-tactile American Sign Language, a form of ASL that is specifically needed for deafblind people.
The deafblind community is a "gray area — the gap between two different disability types that do not work together," according to Kerry Thompson, executive director for Silent Rhythms, a nonprofit to promote inclusion of people with disabilities in the arts and society. Thompson is also deafblind.
Deafblindness includes a range of sensory impairments that requires a unique form of communication. Some people who are deafblind use a screen reader, the same tool used by those who are only visually impaired. Sometimes they pair it with a Braille display or an electronic keyboard, which allows Braille to pop up on the keyboard.
"Seventy-five percent of the time I would go to see a doctor, I was denied access to a sign language interpreter," Thompson said. "If that was my reality during calm times, the chances of getting an interpreter (on site) are even less likely during these chaotic times."
She added, "Our health-care system, while doing the best in a truly unprecedented time, is not prepared to ensure inclusion of the most vulnerable population."
Thompson is a patient at Tufts Medical Center in Massachusetts. The hospital settled a lawsuit earlier this year after a federal Americans with Disabilities Act compliance review found significant barriers to services and medical treatment for patients with disabilities.
"Our data, available for the last 10 months, shows that for ASL we have met the need 93% of the time. We know this falls short. We are using every available resource we are aware of to meet the needs of our patients," Rhonda Mann, Tufts Medical Center spokeswoman, said in a statement to CNBC.
Mann says there is a national and statewide shortage of ASL interpreters and about half of them are tactile interpreters.
Thompson says the deafblind community need the following accommodations to have full access to information and health-care services: ASL videos created with a dark background, dark clothing, good lighting, no windows or distractions; social media posts that summarize what is being shared in two to three sentences; transcripts of all videos uploaded to sites and social media; and emergency preparedness — before, during and after disasters — that includes those with disabilities in the planning.
Swenor said telehealth services offer an "opportunity for a huge change in the access to health care for people with many types of disabilities," but the barriers to accessibility aren't being addressed.
"As we increase utilization of these platforms in the wake of Covid-19, the accessibility of telehealth must be prioritized," Swenor said. "If we can achieve accessible telehealth solutions, this format is a game-changing opportunity to improve access to health care for many patients, including people with disabilities."
She says one reason why health-care systems are not prepared to treat this population is because of insufficient data.
"It's that old saying, 'You treasure what you measure.' We don't collect data that is linked to health care, and since we don't have that data, we don't pay attention. We don't recognize that there's a disparity."
Swenor says data needs to be collected on the Covid-19 infection and mortality rate for people with disabilities. While there is some data from centers that care for people with developmental disabilities, that only covers a fraction of people with disabilities in the United States.
Like most Americans during this time, those who are deaf and blind follow coronavirus updates from the Centers for Disease Control and Prevention and the World Health Organization. The CDC and WHO provide information to the public so they are informed about how to lessen the spread and impact of the virus, but many individuals in the deafblind community say this information does not fully accommodate or include those with disabilities.
Teams of local interpreters, Facebook groups and national organizations, such as DEAF Inc. and the Deaf-Blind Community Access Network, provide transcripts of recent briefings or send out new updates related to the coronavirus so it is easier for those with disabilities to read and listen.
Thompson says the WHO and CDC are attempting to make information more accessible for those who are Deafblind, but more often than not, their videos in sign language are not formatted properly and there are no downloadable transcripts or forums to provide feedback.
"The first few videos put out by the CDC is of a certified deaf interpreter who is a phenomenal signer. The background color is appropriate — what is not appropriate is what she is wearing. The signer had on a black V-neck shirt (I am not sure if she has a white tank top or if it's skin), and this is problematic for those with low vision to see her signing, because her hands are going over the 'white space.'"
She says in another series of videos done by a certified interpreter who is not deaf, the signer has the right clothes and the right background, but the context seems as if a deaf person was not consulted.
"They say to wash your hands for 20 seconds, or the same amount of time as singing "Happy Birthday," but a person signing 'Happy Birthday' is not the same as a person singing 'Happy Birthday,'" Thompson said.
A CDC spokesperson said in a statement it strives to provide resources to all individuals, including persons who are both deaf and blind by providing resources that are displayable via braille and other assistive technology used by members of the Deaf-blind community to access the internet. "These materials follow the federal standards for accessibility (Section 508), and are often provided in multiple formats so that individuals can choose their preferred format," the CDC spokesperson said.
The CDC's YouTube page includes a text transcript of published videos and reformats video content to "provide information in a format accessible to individuals with disabilities."
WHO spokeswoman Margaret Harris said many of the WHO's recorded communications are captioned, but they are aiming to include live captioning in the near future so that people with hearing loss have access.
"WHO is currently working to implement the UN-wide Disability Inclusion Strategy, which was adopted late last year and which is being rolled out gradually in WHO, as in other UN organizations," Harris said in a statement sent to CNBC. "Our web materials and communication products are being converted to a format which is accessible for people with visual impairments, allowing them to be read through screen readers, etc."
The U.S. Department of Health and Human Services' Office for Civil Rights recently outlined a bulletin to remind health-care providers of their obligations under the Affordable Care Act.
"HHS is committed to leaving no one behind during an emergency, and helping health-care providers meet that goal. Persons with disabilities, with limited English skills, and older persons should not be put at the end of the line for health-care during emergencies."
—By Alyssa Jackson, CNBC newsroom intern
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