NCD Letter to DHS, HHS on institutionalization
November 19, 2024
Secretary Xavier Becerra
Department of Health and Human Services
200 Independence Ave. SW.
Washington DC 20201
Secretary Alejandro Mayorkas
Department of Homeland Security
Washington DC 20528
Dear Honorable Becerra and Mayorkas,
I write on behalf of the National Council on Disability (“NCD”) to bring to your attention civil rights violations against PWDs in the aftermath of Hurricanes Helene and Milton. NCD is an independent, bipartisan federal agency charged with providing advice to the President, Congress and federal agencies on matters affecting the lives of people with disabilities (PWDs). NCD is required to “review and evaluate on a continuing basis policies, programs, practices, and procedures concerning individuals with disabilities conducted or assisted by Federal departments and agencies…in order to assess the effectiveness of such policies, programs, practices, procedures…in meeting the needs of individuals with disabilities.”1 NCD also “review(s) and evaluate(s) on a continuing basis new and emerging disability policy issues affecting individuals with disabilities at the Federal, State, and local levels.”2
Immediately after Hurricanes Helene and Milton, NCD attended several meetings with federal and disability stakeholders. A recurring concern voiced in those meetings is the institutionalization of PWDs during and after the most recent hurricanes made landfall. A 24-hour disaster hotline has received multiple complaints of discriminatory acts allegedly perpetrated by hospital staff and shelter personnel who have placed PWDs’ autonomy and independence in peril. Examples include the refusal of admittance to a shelter of a person who is oxygen dependent, citing the individual did not have a personal care assistant (PCA) accompanying them, even though that individual did not require a PCA; a hospital transferring a patient directly to a skilled nursing facility (SNF) instead of coordinating with a durable medical equipment (DME) dealer to provide a hospital bed and other medical equipment in their home; and refusal of admittance to a shelter to a PWD because they required a PCA, and the shelter failed to have the required PCAs on-site to assist in personal care duties.
These are but a few examples of incidents which have or may lead to the involuntary institutionalization of an individual with a disability. It is indisputable that people with disabilities are placed in institutions during and after disasters. NCD’s 2019 report Preserving Our Freedom: Ending Institutionalization of People with Disabilities During and After Disasters (“Preserving”)3 found a marked increase in nursing home admissions after Hurricane Harvey and Hurricane Irma.4 Conflicting federal policies appear to permit this scenario. CMS technical assistance documents waive civil rights protections by expediting nursing home admissions despite guidance from the Department of Justice (DOJ) that states state and local governments should provide assistance to people with disabilities in the most integrated setting appropriate to the needs of that person. These protections include disaster related sheltering needs of people with disabilities who “don’t require the type and level of medical care that would ordinarily be provided by trained medical personnel in a nursing home or hospital.”5
The Office of the Assistant Secretary for Preparedness and Response (ASPR) guidance titled “Working with Older Adults and People with Disabilities: Tips for Treatment and Discharge Planning” cautions responders and healthcare providers not to institutionalize disaster-impacted people with disabilities who did not reside in institutional settings before the disaster. If an individual must be institutionalized, the goal is to return them to the least restrictive environment as soon as possible.6
Lack of tracking and notification to families combined with inadequate data make documenting the number of people with disabilities institutionalized during and after disasters a challenge, if not impossible. For example, CMS Minimum Data Set surveys do not identify or track nursing home admissions during evacuation.7 Lack of data collection, tracking and family member notification when a PWD is institutionalized in the aftermath of a disaster creates an enormous and often insurmountable burden for family members and disability advocates when attempting to locate impacted PWDs after a disaster. Further, once institutionalization takes place, it is difficult for that person to reintegrate into the community because their support system was disbanded the moment they were institutionalized. Additionally, some survivors cannot be located by loved ones and advocates because of the data void.
In the aforementioned meetings, disability advocates have asked HHS to collect and provide data on nursing home admissions during and after a disaster. Data that can be used by disability advocacy groups to provide services to reintegrate impacted PWDs back into the community. NCD has been told that HHS stated that the data cannot be provided because it is not collected and even if collected, it would be a HIPAA violation to provide that information to the respective disability advocacy groups. The HIPAA concerns can easily be addressed by asking the permission of the evacuee to share their status with disability advocates who can assist in the reintegration process post disaster.
All shelters should provide the support and accessibility required for PWDs to shelter with the general population (as HHS and DOJ guidance states), therefore minimizing the risk of institutionalization. Until this is realized, NCD reaffirms our recommendation from our 2019 report, “Preserving”, NCD recommended HHS establish a data collection system and that data collection begins immediately after the next federally declared disaster. The system must identify impacted individuals moved to an institutional setting and quantify movement and displacement of all impacted people in the aggregate.8
Often, the only recourse for a PWD when faced with discrimination during and after a disaster is to file a claim with the Department of Health and Human Services Office for Civil Rights (HHS OCR) or the Department of Homeland Security Office for Civil Rights and Civil Liberties (DHS CRCL). That recourse does not provide an immediate remedy to the discriminatory act and the PWD is still left to navigate the injustice and face the risk of institutionalization. Neither agency has a 24-hour complaint hotline that receives incoming complaints with the ability to address violations in real time. Many PWDs have expressed complaint fatigue. If they take the time and energy to file a complaint, the respective agencies process is lengthy and the result rarely achieves a noticeable change in policy, so they opt to not exert the effort. This in turn results in an underreporting of problems that very much exist. NCD recommends HHS and DHS create a 24-hour staffed hotline during periods of presidentially declared emergency or major disaster declarations. Alternatively, HHS and DHS should consider contracting with disability organizations to manage the hotline during presidential disaster declarations. The contractor, in turn, should have access to personnel from HHS and DHS to address civil rights violations in real time.
It is well-established that people with disabilities are disproportionately affected by extreme weather events and environmental hazards in ways that are often overlooked by state, local, tribal, and territorial (SLTT) governments.9 The issues in this correspondence are not novel, they occur during and after every disaster. With the increase in frequency and severity of extreme weather events their reoccurrence is foreseeable and preventable. Now is the time to create solutions to mitigate the impact of future disasters on PWDs. NCD stands ready to assist to that end. I am available to answer any queries you and your staff may have regarding the above recommendations. Please do not hesitate to contact me at cgordon@NCD.gov for further engagement.
Sincerely,
Claudia Gordon
NCD Chair
-——
129 U.S.C. §781 (a)(5)-(a)(6).
229 U.S.C. § 781(a)(10).
3 National Council on Disability, Preserving Our Freedom: Ending Institutionalization of People with Disabilities During and After Disasters, https://www.ncd.gov/report/preserving-our-freedom-ending-institutionalization-of-people-with-disabilities-during-and-after-disasters/, accessed November 4, 2024.
4 ibid.
5 U.S. Department of Justice, ADA Best Practices Toolkit for State and Local Governments, https://www.ada.gov/pcatoolkit/chap7shelterprog.htm#6, accessed November 4, 2024.
6 U.S. Department of Health and Human Services, Working with Older Adults and People with Disabilities: Tips for Treatment and Discharge Planning, https://www.phe.gov/preparedness/planning/abc/pages/elderly-disabled.aspx, accessed November 4, 2024.
7 National Council on Disability, Preserving our Freedom: Ending Institutionalization of People with Disabilities During and After Disasters, https://www.ncd.gov/report/preserving-our-freedom-ending-institutionalization-of-people-with-disabilities-during-and-after-disasters/, accessed November 4, 2024.
8 National Council on Disability, Preserving our Freedom: Ending Institutionalization of People with Disabilities During and After Disasters, https://www.ncd.gov/report/preserving-our-freedom-ending-institutionalization-of-people-with-disabilities-during-and-after-disasters/, accessed November 4, 2024.
9 National Council on Disability, The Impacts of Extreme Weather Events on People with Disabilities, https://www.ncd.gov/report/the-impacts-of-extreme-weather-events-on-people-with-disabilities/, accessed November 4, 2024.