On October 3, 2022, CommunicationFIRST submitted comments to the US Department of Health and Human Services (HHS) on its proposed rules to implement and enforce Section 1557 of the Affordable Care Act. These regulations include protections for people who cannot rely on speech to be heard and understood, and require health care entities to provide accommodations and services to people with speech-related disabilities to ensure they have equal access to health care. In our comments, CommunicationFIRST recommends that HHS strengthen these rules, noting that “Effective communication is vital to safeguarding the right of our members to receive discrimination-free, high-quality health care.“
Our comments can be accessed here (PDF): https://izh66f.p3cdn1.secureserver.net/wp-content/uploads/2022/10/2022-10-03-CommunicationFIRST-Comments-on-HHS-Section-1557-Proposed-Rule.pdf
Some of our key points and recommendations to HHS include:
- Our members encounter enormous barriers to AAC technology, tools, and strategies at every turn, lack access to the means to effectively communicate, and endure acts of conscious and unconscious prejudice, discrimination, and dehumanization daily.
- Evidence suggests ableism and the disability-based discrimination it spawns are especially virulent in the fields of medicine and health care.
- We believe this denial of the human, civil, and legal right to communicate in health care settings is a problem of significant magnitude, and we urge OCR to take prompt action to address it.
- Indeed, the very fact that we require robust language-based AAC – rather than spoken words – to effectively communicate is often used to stamp us as the “other” and incapable of “effective communication.”
- It is common for physicians and other health professionals to lay their hands on us and “treat” us without even asking our permission. In addition to violating the ethical duty to “do no harm” as well as the legal obligation under Section 1557, Section 504, and the Americans with Disabilities Act (ADA) to effectively communicate with all patients with disabilities, such behavior inevitably makes for third-class medicine.
- The Department must make clear that auxiliary aids and services include the provision of individualized and tailored aids and services if that is what the patient requires to be afforded equal access and opportunity to benefit from the covered entity’s programs and services.
- CommunicationFIRST urges the Department to incorporate additional language in the final rule, preamble, and guidance to minimize the additional burdens patients with disabilities nearly always face in having to both repeatedly notify, request, monitor, and enforce the covered entity’s legal obligation to remove access barriers.
- Moreover, when effective communication bias and discrimination occurs, it violates and frequently eviscerates a person’s sense of self, of being “worthy,” of being “valued,” of “belonging to one’s community,” of having control of one’s body, one’s health, and sometimes even life itself. When a person’s right to effective communication is violated repeatedly as is typical in the lives of children and adults who require AAC, our rights to community integration, freedom from unjustifiable isolation, access to high quality health care, and informed consent are rendered moot.
- But the power imbalances that exist between health care professionals and patients who require AAC are immense, exacerbating both the magnitude and frequency of harm. The integration mandate in Section 504 and the ADA as affirmed by the U.S. Supreme Court’s decision in Olmstead v. LC, 527 U.S. 581 (1999), is not intended merely to prevent and remedy needless institutionalization. Rather, it is meant to assure all people with disabilities have access to and enjoy status as members-in-full of the American community. It is meant to assure that we are able to have all equality of opportunity, responsibilities, rights, and benefits associated with doing so.
- Injustice that occurs at the intersections of the right to community integration, effective communication, language access, and quality of care should not be ignored or allowed to fester.
- In light of the fact that Black, indigenous, non-English-using, and people of color are more likely to acquire significant expressive and other disabilities and endure multiple forms of prejudice and discrimination, we urge HHS to inform and educate health care professionals, facilities, and systems on their obligation to take concerted steps to assure the effective communication rights of multiply marginalized people who need AAC.
- We urge HHS to make clear in the final Section 1557 regulations that covered entities carry out both the effective communication and language access requirements in a well-coordinated, comprehensive, seamless, and equally effective manner as a standard operating procedure.
- One specific technological barrier facing many AAC users is the prevalent use of “secure portals,” which many health care providers insist their patients use, citing HIPAA requirements. These portals often require multiple keystrokes to access, and often will fail as a matter of design to preserve correspondence between the patient and provider. Most AAC users have significant manual and other fine motor impairments that impact their ability to use keyboards and computer mice, and these portals impose frustrating barriers for patients seeking to communicate with their providers. We urge HHS to include a statement in the final rule’s preamble or elsewhere in guidance that a reasonable modification to ensure equal access to a covered entity’s programs and services can include communicating with some other modality that is more accessible to the patient (including email), if the patient so requests.
- We appreciate the Department’s caution to health care providers in the proposed rulemaking on this point, and specifically against the use of the Glasgow Coma Scale, especially as regards its explicit and intentional dehumanization of people with speech-related disabilities and people with other motor disabilities.