November 10, 2023
Submitted via regulations.gov
Melanie Fontes Rainer, Director
Office of Civil Rights
U.S. Department of Health and Human Services
200 Independence Avenue
Washington, DC 20201

Re: Notice of Proposed Rulemaking on Discrimination on the Basis of Disability in Health and Human Service Programs or Activities. Docket No: 2023-19149, RIN: 0945-AA15

Dear Director Fontes Rainer:

Thank you for considering The Partnership for Inclusive Disaster Strategies comments on the proposed rule. The Partnership for Inclusive Disaster Strategies (The Partnership) is the only U.S. disability-led organization with a focused mission on equity for people with disabilities and people with access and functional needs throughout all planning, programs, services and procedures before, during and after disasters and emergencies.

We achieve our mission through disability-led disaster response and community resilience; community engagement, organizing and leadership development; advocacy and systems change; training, technical assistance and research; and unwavering support for local disability organizations.

The Partnership prioritizes equity, access, disability rights, disability justice, and full inclusion of people with disabilities, older adults, and people with access and functional needs before, during and after disasters and emergencies. We recognize that prevention, planning, response, recovery and mitigation must start with and be led by multiply marginalized disabled people who are the most disproportionately impacted.

The Partnership supports the proposed rule as a whole. However, we are cognizant that Public Health Emergencies and disasters are critical junctures where people with disabilities are institutionalized. Any rule whose goal is mitigating Olmstead noncompliance must specifically address this. 

The federal government delineates how and why disabled people are institutionalized in disasters in detail in the 111 page National Council on Disability (NCD) report Preserving Our Freedom: Ending Institutionalization of People with Disabilities During and After Disasters. Through this report “NCD examined available data from several major storms and disasters and found that people with disabilities are frequently institutionalized during and after disasters due to conflicting federal guidance; a lack of equal access to emergency and disaster-related programs and services; and a lack of compliance with federal law.” Despite this, “The issuance of waivers by the Centers for Medicare and Medicaid Services (CMS) allows states to place disaster-impacted people with disabilities into institutional settings for the convenience of emergency managers and health care providers even though these individuals had not developed healthcare needs requiring hospital or nursing home level care.” 

Institutionalization of disabled people in restrictive environments disproportionately occurs throughout the disaster cycle. For example, emergency departments, first responders and disaster shelters staff frequently refer or transfer disabled people to nursing facilities during disasters. Reasons why federally funded emergency response programs refer or transfer disabled people to nursing facilities include: structural inaccessibility of transportation and shelters, access to power; absent or inadequate mandated personal assistance at shelters; bias that disabled people belong or are safer in nursing facilities as opposed to community living settings living settings; and separation from family members, community support providers, and personal assistance services. 

The latter especially occurs when people with disabilities are sent to segregated so called “special” or “medical” needs shelters. Segregated shelters, although they theoretically offer additional services, have been consistently found to be inadequate to protect disabled people from harm. This includes exposure to infectious diseases, such as COVID-19; inadequate health maintenance; lack of effective communication access; and separation of disabled people from family and community support, including the benefits of integration. This can result in transfer to nursing institutions. Further, it is not unusual for these segregated facilities to turn away disabled people who have been successfully living in the community because their needs are perceived as too great. This could include oxygen use, need for uninterrupted power, use of personal assistance services, and other non-acute medical care needs. 

Disabled people are also referred to nursing facilities by hospitals during disasters and public health emergencies. This is despite a clear directive from the US Department of Justice, stating “Civil rights protections and responsibilities still apply, even during emergencies. They cannot be waived.”

According to CMS “Consistent with the integration mandate of Title II of the ADA and the Olmstead vs LC decision, States are obligated to offer/provide discharge planning and/or case management/transition services, as appropriate, to individuals who are removed from their Medicaid home and community based services under these authorities during the course of the public health emergency as well as to individuals with disabilities who may require these services in order to avoid unjustified institutionalization or segregation. Transition services/case management and/or discharge planning would be provided to facilitate these individuals in their return to the community when their condition and public health circumstances permit.”  

However, flying in the face of these hard won civil rights protections, in Public Health Emergencies declared by the Health and Human Services (HHS) Secretary, the HHS Blanket Waivers provided under Section 1135 of the Social Security Act, are used to waive three-day hospitalization requirements which allow arbitrary transfer individuals in acute care hospital beds to long term care facilities due to the hospital’s perceived need for the hospital bed, not due to the individual’s level of care needs. This is done without developing discharge plans that will provide disabled people services in the community that are most appropriate to their needs. During the COVID-19 Public Health Emergency, there was constant transfer of people with disabilities into nursing facilities to make room in hospital beds. This denied individuals the right to be served in the most integrated setting appropriate to their needs. Individuals were often placed in environments with extreme levels of uncontrolled COVID-19 infection, and dangerous lack of trained and vaccinated staffing in facilities already cited by CMS for egregious failure to manage infectious diseases, staffing levels and access to personal protective equipment.  

In order to address findings of the federal government in its NCD report and provide consistency within HHS, the rule must address ways to mitigate discrimination against people with disabilities via institutionalization, explicitly inclusive of discrimination in public health emergencies and disasters. 

Institutionalization is far from the only form of discrimination that disabled people experience in disasters, with significant and often catastrophic health consequences. Throughout emergencies (including public health emergencies) and disasters discrimination is pervasive, largely due to a lack of enforcement. Notifications of emergencies and disasters are consistently inaccessible. Accessible transportation is often not provided when transportation is offered to people without disabilities. Websites are consistently inaccessible to people who use assistive technology and are attempting to gain information about disasters and emergencies. It has been common that people could not register for COVID-19 vaccines, as an example of the failure of effective communication access in public health emergencies.  

While we recognize that compliance with section 504 is complaint driven, we are also aware that expecting marginalized people to file complaints about the discrimination they are experiencing during the most difficult moments of their lives is overly burdensome. Assuming that people have the wherewithal, information, and even access to file a complaint, adds to the infeasibility of the process. This is even truer for people with disabilities who have other marginalized identities such as being Black, Brown or Indigenous, being LGBTQ+, or are experiencing homelessness. The Department of Justice recognized that relying on complaints alone was not adequate when it launched Project Civic Access. With a goal to facilitate compliance with the ADA, and in many situations section 504, this has become a tool for compelling enforcement. This is primarily accomplished through settlement agreements with the DOJ and is necessary for enforcement of section 504. To successfully facilitate compliance with HHS obligations under section 504, a similar tool must be developed, funded, adequately staffed, and fully implemented.

Once again, thank you for your consideration of these comments.