HHS Action Improves Healthcare Accessibility and Strengthens Protections against Disability Discrimination in Healthcare

HOW THE RULE WOULD BENEFIT INDIVIDUALS WITH SMA AND OTHER DISABILITIES

The updated Section 504 rule includes the following protections and updates:

• Accessibility of Medical Equipment: The rule adopts the U.S. Access Board’s accessibility standards for medical equipment such as exam tables and weight scales that can accommodate people in wheelchairs. In recent public comments, Cure SMA shared numerous examples of individuals with SMA being denied access to healthcare because of inaccessible medical diagnostic equipment. “Sometimes, the clinic’s set-up just doesn’t work. And I have to go to different clinics, until I can find one that does work,” said a woman with SMA who described leaving her doctor’s appointment because the clinic was unable to accommodate her power wheelchair for an x-ray. Another person with SMA has gone “multiple years without ever getting my weight done” because her doctor’s office does not have an accessible weight scale that can accommodate her wheelchair. The new Section 504 rule requires that most doctors’ offices have at least one accessible exam table and at least one accessible weight scale within two years (unless the provider can demonstrate doing so would result in a “fundamental alteration” or “undue financial and administrative burden”).
• Value Assessment Methods: The rule prohibits the use of any measure, assessment, or tool (such as quality-adjusted life years or QALYs) that discounts, under values, or diminishes the life of a person with disability when determining access to healthcare and related equipment and services. In the final rule, HHS wrote that “the use of a measure of value that assigns lower value to extending the lives of people with disabilities to determine eligibility, referral, or provision or withdrawal of an aid, benefit, or service can be nonetheless discriminatory.” Discriminatory policies surfaced throughout the COVID pandemic related to rationing access to equipment (ventilators), vaccines, and care for individuals with disabilities.
• Web, Mobile App, and Kiosk Accessibility: The rule requires that medical providers’ websites, mobile applications, and office kiosks be accessible for individuals with disabilities. The rule adopts accessibility standards and sets compliance dates of May 11, 2026 for larger providers and May 10, 2027 for smaller providers, unless the accessibility requirements would result in a fundamental alteration or cause undue financial and administrative burdens. In the rule, HHS, wrote “as technology continues to advance, the methods for ensuring programs and activities are as effective for people with disabilities as those provided to others may need to change, as well.”

Individuals with SMA and others can learn more about the Section 504 update through the U.S. Department of Health and Human Service fact sheet. To learn more about Cure SMA’s efforts to advance policies and break down barriers in other SMA community priorities, including caregiving, transportation, housing, and employment, visit Cure SMA’s advocacy page at: https://www.curesma.org/cure-sma-advocacy/.