Telehealth is the best option for millions of Americans, but more Americans need to be included.
Three-hundred-and-thirty U.S. health organizations have called on Congress to act swiftly in renewing waivers that allow for the provision of telehealth services and to consider permanently allowing virtual health services.
The COVID-19 pandemic has established that telehealth and technology-delivered services — like apps — are here to stay and benefit patients. It is time to build these systems of care better, especially for people with disabilities.
Telehealth has been touted as a means to drastically expand access to care, but if patients do not have tools such as broadband internet or private access to tech devices, telehealth cannot help them. President Joe Biden’s Build Back Better plan allocates $1 billion to improving broadband infrastructure and increasing access to devices, such as computers and smartphones. This is especially important for the disability community.
Compared to non-disabled individuals, people with disabilities have less access to the internet and internet capable devices. These infrastructure plans must therefore be implemented with a focus on serving those most in need.
Few telehealth policies and technologies have been created from a disability inclusion framework. This is problematic, given that 61 million American adults live with a disability and telehealth stands as a means to increase access to quality care while reducing the financial and physical burdens of traveling to appointments.
The lack of input from people with disabilities and their providers has made current telehealth technologies less likely to be accessible, as they do not reflect the range of needs in the disability community.
For example, a patient in our hospital with multiple chronic health conditions was experiencing progressive vision and hearing loss. Her lack of reliable transportation, combined with her conditions, made telehealth ideal. However, she could not afford an Internet-capable device, and her vision loss made using her home phone increasingly difficult.
She was only able to attend telehealth appointments by having a friend come to assist with setting up the phone for her sessions. Not everyone has a friend who can be available for their appointments, nor should patients have to give up their privacy just to receive remote care.
Often potential users offer input to design and develop new technologies and services. However, the people involved in the development of many things have overwhelmingly skewed towards the same populations time and time again. People most at risk for health disparities (many with identities based on race, ethnicity and disability status) are dramatically underrepresented, from participation in clinical trials to the design of health technology.
The lack of diversity in this input can have big impacts. For instance, because of the visual feedback on results of at-home COVID-19 tests, blind people are unable to independently read their results.
Telehealth services are typically offered only through the phone or video. This dichotomy leaves out individuals with aural, visual and cognitive impairments who may benefit from text-based or other modified services.
This setup also can make it harder to reach people with disabilities, who are less likely to own a computer or smartphone. Additionally, audio and video visits are the only types of mental health telehealth services reimbursed by Medicaid and Medicare.
To be sure, the COVID-19 pandemic forced many patients and providers to move towards telehealth rapidly. However, telehealth is not new, and data show that people with disabilities were the most likely to use telehealth prior to the pandemic.
This problem is not new, but it is fixable.
Policy makers, tech innovators, administrators and health care providers can take specific steps to truly make health care more accessible to people with disabilities. This, in turn, will make care more accessible to everyone.
The tech industry needs to invest in developing platforms and devices with active, consistent, and frequent input from the disability community. This input must reflect a range of individuals with disabilities. A variety of identities exist beyond disability status. Overlooking this diversity will continue to exacerbate telehealth disparities based on overlapping factors such as age, primary language, internet access and more.
Policy makers must welcome people with disabilities to voice their needs for care. Teal on the Hill, focusing on individuals with Spina Bifida, is one example of people with disabilities and their advocates annually voicing their needs to legislators. The American Association of People with Disabilities has sent public letters to Senate Majority and Minority leaders regarding what will benefit the disability community during the pandemic and beyond.
Exposure to the lived experiences of individuals, as well as disability inclusion frameworks, could better inform legislative policies to allow health care organizations and industries to begin reducing barriers and health inequities in the disability community.
The organizations calling on Congress to continue telehealth legislation need to include the voices of disability advocates and people with disabilities to strengthen their efforts.
Improving the country’s telehealth infrastructure requires time and monetary investment from the tech industry and health care organizations. Rightfully so, many are concerned with privacy and security. However, the cost of failing to improve telehealth deliverables and policy is grave; health inequities cost the U.S. economy $42 billion in lost productivity annually.
Technology is necessarily a part of mental and physical health care moving forward. It is urgent to improve telehealth systems. People with disabilities can lead the way as to how.
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