Hello AC Community,
This is Dante’ Daniel, Public Policy Manager with the Amputee Coalition’s Government Relations department. Today I am writing to provide context of our latest advocacy efforts concerning the proposed rulemaking on Discrimination on the Basis of Disability in Health and Human Services Programs or Activities.
This anticipated proposed rule updates, clarifies, and strengthens the implementing regulation for Section 504 of the Rehabilitation Act of 1973 (Section 504), the statute that prohibits discrimination against otherwise qualified individuals on the basis of disability in programs and activities that receive Federal financial assistance or are conducted by a Federal agency.
Specifically, the U.S. Department of Health and Human Services (HHS) is proposing new regulations that would:
- Prohibit discrimination in medical treatment decisions;
- Prohibit the discriminatory use of value assessments;
- Clarify accessibility standards for web, mobile application, and kiosk accessibility; and
- Establish enforceable standards for accessible medical diagnostic equipment.
The Proposed Rule would also update the definition of “disability” and outdated terminology identifying people with disabilities to ensure consistency with statutory amendments to the Rehabilitation Act, enactment of the Americans with Disabilities Act and the Americans with Disabilities Act Amendments Act of 2008, and the Affordable Care Act.
The Amputee Coalition decided to sign-on to three letters with four different partner coalitions who are listed below:
- Consortium for Constituents with Disabilities (CCD)
- Disability & Rehabilitation Research Coalition (DRRC)
- Independence Through Enhancement of Medicare and Medicaid (ITEM) Coalition/Coalition to Preserve Rehabilitation (CPR)
Although each coalition agreed; in part, with the proposed rule change, each coalition also offered a granular analysis and review that aligned with the AC’s mission and purpose. Below is a summary of these comment letters:
Consortium for Constituents with Disabilities
The CCD comments addressed questions regarding continued discrimination in medical treatment, value assessment methods, child welfare programs and activities, website and mobile applications accessibility, telemedicine portal access with assistive technology, accessible medical equipment, and integration. Their comments also expound on supported decision-making, obligations during public health emergencies; raised concerns regarding the use of algorithms and its biased application, the need for greater clarity in the discussion of service animals and the construction of the phrase “solely by reason of his or her disability” among other issues.
Disability & Rehabilitation Research Coalition
The DRRC is a coalition that advocates for the investment in medical research for people with disabilities to improve health and function. DRRC wholeheartedly supported the proposed rule’s overarching goal of ensuring nondiscrimination in the provision of health programs and activities to improve health care access and improve health outcomes for people with disabilities. The DRRC supported HHS’s recognition in the proposed rule that people with disabilities experience health disparities as a result of unequal access to health care including inappropriate exclusion from clinical research trials. DRRC’s recommendation was for HHS to quickly finalize the ruling to protect the ability of all individuals, whether they are blind, deaf, hard of hearing, or deafblind or have low vision, seizure disorders, limited manual dexterity, speech disabilities, learning disabilities, or cognitive disabilities, to access the health care services they need without fear or impact of discrimination.
Independence Through Enhancement of Medicare and Medicaid Coalition/Coalition to Preserve Rehabilitation
The ITEM Coalition is a national consumer- and clinician-led coalition advocating for access to and coverage of assistive devices, technologies, and related services for persons with injuries, illnesses, disabilities, and chronic conditions of all ages. CPR is a coalition of national consumer, clinician, and membership organizations that advocate for policies to ensure access to rehabilitative care so that individuals with injuries, illnesses, disabilities, and chronic conditions may regain and/or maintain their maximum level of health and independent function.
The ITEM Coalition’s comment letter explains how medical discrimination has affected people with disabilities, but also offers best practices of ensuring that people with disabilities are appropriately treated by medical providers. Best practices stated by the ITEM Coalition to counter discriminatory behaviors mentioned are:
- competency-based trainings for physicians on disability;
- a structured process for requesting a second opinion/professional consultation; and
- the availability of a specially trained, independent review board to consider patient appeals of medical treatment decisions and public reporting on the outcome of those decisions.
The ITEM Coalition’s comment letter is fairly critical of the Clarification Regarding Web, Mobile Application, and Kiosk Accessibility sector of the rule change. As times have evolved the healthcare field has become very reliant on information and communication to serve all patients. Whether this is an electronic medical record you are attempting to access, patient portals, scheduling/checking in to a medical appointment, telehealth and other tools, it is evident that the reliance is there. As the dependency has increased, the inaccessibility has as well. Historically, one of the major causes of this inaccessibility was the lack of clarity as to what accessibility actually entails. In summary, the ITEM Coalition seeks to improve upon the proposed rule change by minimizing exceptions from complying to the rule and lessening the timeframe to comply, ultimately allotting for an increase of accessibility for persons with disabilities a lot sooner.
To view the full comment letters, visit our Advocacy Letters to Policymakers webpage. If you haven’t already, we invite you to join our active Advocacy community on AC Connect!