With a long-awaited update to nondiscrimination rules on the horizon, healthcare providers must ready themselves to comply with new standards for accommodating patients with disabilities.
The Health and Human Services Department issued a proposed rule in September that would require providers to retrofit facilities and medical equipment to meet patients’ physical and sensory needs, ensure websites, mobile apps and virtual care programs are user-friendly for people with disabilities, and remove disability status as a factor in clinical support tools. The final rule could appear within weeks.
Related: HHS proposes new protections for people with disabilities
The HHS Office for Civil Rights, which promulgated the regulation, contends it would dramatically improve access to medical care for people with disabilities, set clear standards for providers that do business with the federal government and protect patients against discrimination.
The proposed rule mandates physical upgrades to healthcare facilities to ensure accessibility. That includes making certain that features such as elevators and ramps are functional and meet federal standards. Additionally, medical equipment such as examination tables, scales and mammogram machines would need modifications or replacements to accommodate patients using wheelchairs.
While healthcare providers generally support improved accessibility, the American Medical Association raised concerns about the cost, particularly for smaller practices serving disadvantaged populations. The proposed rule addresses some of these questions by offering exceptions and extended timelines for smaller providers for which compliance would impose undue financial hardship.
The AMA also urges the Office for Civil Rights to take a collaborative approach to compliance and work with providers on corrective action plans rather than emphasize punitive measures such as cutting off federal funding and Medicare reimbursements.
The upcoming final rule will be the first update to Section 504 of the Rehabilitation Act of 1973 since 2005. The proposal aims to harmonize that law with the Americans with Disabilities Act of 1990 and Section 1557 of the Affordable Care Act of 2010.
That would clear up legal ambiguities that have likely been hindering providers from understanding their responsibilities and investing in compliance, said Dr. Hoangmai Pham, president of the Institute for Exceptional Care, an advocacy organization for improving healthcare access for people with intellectual and developmental disabilities.
“Its significance is on par with when Congress created Medicare, and a little provision in that statute said that Medicare shall not pay any hospitals that segregate on the basis of race,” said Pham, who was chief innovation officer for the Center for Medicare and Medicaid Innovation under President Barack Obama. “With one fell swoop, Congress eliminated segregation in Southern hospitals, because nobody didn't want Medicare money. This, to me, feels on that order of magnitude.”
Adults with disabilities commonly experience discrimination in healthcare, according to a study the Urban Institute published last year. Researchers found that 40% of adults with disabilities suffered unfair treatment in healthcare, at work, or when applying for social services. Black, Latino and non-English-speaking people were disproportionately affected, according to the study. More than seven in 10 people with disabilities endured disruptions to their care, and more than half reported delays or that they avoided seeking care because of discrimination, the Urban Institute reported.
The Office for Civil Rights received 51,000 discrimination complaints from people with disabilities in 2022, Office for Civil Rights acting Director Melanie Fontes Rainer said during a news conference last September. HHS did not respond to requests for comment.
“These regulations lay out what the future of accessible medicine can be,” said Patrick Cokley, senior program officer for equity and social justice partnerships at the Robert Wood Johnson Foundation, which funded the Urban Institute research. “In many ways, the proposed rule is a response to the fact that there's this perception of accessibility that's existed in medical spaces, but it's not quite been as accessible as is wanted for a growing community" of people with disabilities, he said.
Retrofitting facilities for accessibility
While the proposed rule requires accessibility upgrades, it also offers some flexibility. Providers would be permitted to divert patients who need accessible facilities to compliant locations, for instance. However, this might force some patients to travel farther for care and create access challenges, Cokley said.
The final rule should require a gradual increase in the number of compliant facilities over time, ensuring wider accessibility, Pham said. Although these changes may put a cost burden on providers, HHS could moderate that by giving them more time to comply. But there are advantages to moving quickly, she said.
“Regulators would be doing healthcare providers a favor by mandating this at a much faster clip, because the reality is, when you make your facilities accessible for people with disabilities, they become much more accessible, pleasant and effective places to receive care for everyone. And that is what they're missing out on,” Pham said.
The AMA supports not mandating “excessive structural retrofitting of existing facilities,” and asked for flexibility in achieving access so long as it does not come at “great cost or inconvenience” to patients, CEO Dr. James Madara wrote in a comment letter to HHS.
Cityblock Health, which provides care to Medicaid, Medicare and dually eligible patients, supports the regulation and has already taken steps to improve accessibility for its patients, said Jennifer Baron, senior strategist of policy and product. Last year, Cityblock opened a clinical office in Brooklyn, New York, that is designed with accessibility and patient experience in mind, she said.
The reception desk has different height levels to accommodate patients of all heights and those in wheelchairs, Baron said. A variety of chair sizes and shapes cater to patients of different sizes and comfort levels. Additionally, the office features Braille on its signs and fully adjustable exam tables, she said. The building is located near public transportation to make it accessible for people without cars or who cannot drive.
“We are not thinking about this in a reactive way because we feel like there might be some federal or state regulation,” Baron said. “We want to be pushed to make sure that we are providing the most accessible care to our members.”
Improving communication with digital tools
Healthcare organizations would be required to offer effective communication methods for people with impairments, such as interpreters, text captioning and Braille materials. In addition, HHS is proposing specific requirements — known as the Web Content Accessibility Guidelines — for web and mobile accessibility. This would impact how healthcare organizations utilize virtual care platforms, websites, patient portals and social media.
The AMA said the costs associated with these requirements could range from $7,000 to $23,500, plus an additional $800-$1,500 per month due to technology upgrades. The physician society warned these expenses and associated legal liability may dissuade providers from using such technology.
“We are concerned that if these new highly stringent technical requirements are finalized as proposed, organizations will be hesitant to leverage these technologies to promote access to services or activities altogether, for fear of opening themselves to possible litigation, potentially losing out on these valuable tools to help spread the word about vaccines, cancer screenings and countless other important service offerings,” the AMA wrote in its comment letter.
That is unlikely because technology reduces costs and increases efficiency and access, said Jessica Roberts, director of the Health Law and Policy Institute at the University of Houston Law Center. “I’m hoping that we’re going to see developers respond and create better technology,” she said.
Eliminating disability biases
The proposed rule includes a general prohibition on disability discrimination in medical treatment.
That would mean providers cannot turn someone away for care based on their disability status. Clinical tools and value assessments — the measures providers use to make resource allocation decisions — would be prohibited from using disability status as a determining factor for medical interventions.
For example, HHS proposes removing disability as a factor in the Quality-Adjusted Life Year tool, which estimates an individual's remaining lifespan and quality of life. These tools faced criticism in 2020 during COVID-19 surges, when some overwhelmed hospitals prioritized ventilators for non-disabled patients, Cokley said.
Rhonda Eppelsheimer, co-director of the University Center for Excellence in Developmental Disabilities at Oregon Health and Science University, said the draft rule still contains a gray area that could allow providers to discriminate against patients. Providers could continue to turn away patients they think would be difficult to take care of, she said. “There are ways that are subtle, overt and covert that prevent access,” Eppelsheimer said.
