To: Senate Health, Education, Labor, and Pensions (HELP) Committee 

From: The Partnership for Inclusive Disaster Strategies

Re: Comments on Pandemic and All-Hazards Preparedness Act (PAHPA) reauthorization

Date: March 29, 2023

The Partnership for Inclusive Disaster Strategies (The Partnership) is the only U.S. disability-led organization with a focused mission of 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 is commenting on the Pandemic and All-Hazards Preparedness Act (PAHPA) reauthorization. Much of our comments are derived from information provided by callers to The Partnership’s Disability and Disaster Hotline and feedback from national stakeholders on daily and weekly national stakeholders calls.

Although the goal of PAHPA is “to improve the Nation’s public health and medical preparedness and response capabilities for emergencies, whether deliberate, accidental, or natural,” this goal has not been the experience of people with disabilities, older adults, and others with access and functional needs. Prior to the COVID-19 public health emergency, and increasingly during the public health emergency, people with disabilities have consistently reported a lack of access to emergency and disaster-related programs and services, despite legal requirements that these programs and services be accessible to people with disabilities. People with disabilities who are also members of other marginalized groups, including people of color, members of the LGBTQ+ community, people experiencing homelessness, and poverty are impacted disproportionately by the lack of access to programs and services.

Although people with disabilities have significant civil rights protections under the Rehabilitation Act and the Americans with Disabilities Act, these protections are often not understood even though it has been several decades since their enactment. 

At times, providers believe and communicate incorrectly to people with disabilities that disability civil rights are not protected in disasters. Other times, disaster service providers do not understand their obligations to provide or are unwilling to provide required accommodations including sign language interpreters, accessible print materials, and physically accessible structures. 

Critically, the civil rights of people with disabilities are not being enforced during disasters and public health emergencies. Under the Rehabilitation Act, all programs receiving any federal funding must comply with significant obligations to people with disabilities seeking or receiving disaster or emergency related programs and services. This applies to subrecipients of federal financial assistance, as well. The federal government simply has not enforced this obligation to any meaningful degree. Under Titles II and III of the Americans with Disabilities Act (ADA), state and local government entities and certain providers have significant obligations to people with disabilities in disasters and emergencies.

Too frequently, current practices lead to nursing facility placement of disabled people, including older adults with disabilities Failing to provide accommodations or failing to provide appropriate accommodations can result in people with disabilities being institutionalized in nursing facilities. Other practices that directly lead to and prolong institutionalization in nursing facilities include use of certain aspects of Section 1135 of the Social Security Act blanket waivers which allow the Secretary certain flexibilities during a public health emergency. Practices that lead to institutionalization included waiving the three day hospital stay requirement before nursing home admission; allowing for the movement of a disabled person from an acute care hospital to a nursing home, based on the hospital’s need for the bed occupied by the disabled individual not that individual’s needs; and relaxing reporting requirements for collecting Minimum Data Set (MDS) and Preadmission Screening (PASRR) in nursing facilities. This misuse of blanked waivers must be eliminated.

It is widely recognized that nursing facility placement leads to isolation, illness and earlier death. To the degree that people contracting infections at a higher rate and dying earlier was ever debatable, COVID-19 has made this incontrovertible. Providing services in institutions like nursing facilities when it is not the least restrictive environment appropriate to an individual’s is a violation of the ADA integration mandate under the Olmstead Supreme Court Decision. In addition, institutionalization also is a more costly alternative than providing individuals services in the community.

Older adults and others do not reside in nursing facilities because they are aging. They are relegated there because of the absence of home and community-based services for remaining at home and in the community.

There were considerable numbers of complaints filed alleging that crisis standards of care, which vary from state to state, were discriminatory against people with disabilities. There were allegations that hospitals had denied ventilators to patients because they had Down Syndrome, dementia, quadriplegia, pre-existing respiratory conditions and other disabilities. The Office of Civil Rights in the Department Of Health and Human Services ultimately issued guidelines clarifying that it was a violation of the ADA to deny equal access to hospital services to people with disabilities. This was based on the unwaivable right of people with disabilities to equal opportunity to participate in and benefit from programs and services and prohibits use discriminatory eligibility criteria. There is concern that these guidelines will become temporary or be eroded as the COVID Public Health Emergency is lifted.

Many of the disparities that exist for people with disabilities, older adults, and others with access and functional needs can be mitigated by incorporating the language in the REAADI for Disasters Act as a title of the PAHPA reauthorization in the 118th Congress.

REAADI will address gaps for people with disabilities, older adults and others with access and functional needs in PAPHA by:

• ensuring that the there is a stronger, more consistent voice of people with disabilities and older adults throughout emergency preparedness, response and recovery by expanding the National Advisory Committee for Individuals with Disabilities and Disasters into a National Commission on Disability Rights and Disasters;
• funding research to contribute to determining how to best meet the needs of people with access and functional needs to decrease deaths, injuries and harm to people with disabilities, older adults and people with access and functional needs;
• Providing ongoing, targeted training and technical assistance to State, local, Tribal and Territorial disaster relief, public health, and social service agencies to ensure that the civil rights of people with disabilities are maintained during disasters;
• establishing in statute the Crisis Standards of Care issued by HHS/OCR during the pandemic, and to applying those standards to all public health emergencies and disasters;
• recognizing the role Centers for Independent Living –and other disability-led organizations that support people with disabilities in living independently in the community– can play throughout local disaster preparedness, response and recovery;
• establishing a Department of Justice review of settlement agreements related to individuals with disabilities and older adults who alleged a lack of access to disaster-related programs and services.
• creating a government accountability review process for federal funds utilized for disasters to ensure compliance with federal law.

Adopting REAADI as a title of PAHPA will reduce costs and expand critical resources to emergency and disaster-impacted communities while protecting the rights of people with disabilities, and saving the lives of people with disabilities, older adults, and others with access and functional needs.

In addition to incorporating REAADI into PAPHA and eliminating 1135 waivers options that lead to and prolong nursing facility institutionalization, The Partnership supports the establishment of the capacity building and response authorities found in the Public Health and Social Services Emergency Fund (PHSSEF) Justiifications of Estimates for the Appropriations Committee. See page 67 of the PHSSEF CJ.

Programs need but often do not have the funding authorities and flexibilities to support coordinated, targeted human services delivery following a disaster. The PHSSEF propose to establish a disaster human services emergency fund to strategically respond to disasters by promptly directing funds to support disaster-caused human service needs. This fund would also address issues related to fiscal year limitations by allowing for funding for disasters occurring near the end of the fiscal year—which overlaps with Atlantic hurricane and Western wildfire seasons. Using this fund to help meet surges in service demands, recover from losses, and address immediate needs would significantly improve disaster response for people with access and functional needs, including people with disabilities, older adults, children and families.

Sincerely, 

Shaylin Sluzalis and Germán Parodi, Co-Executive Directors