1 National Council on Disability

 

Preserving Our Freedom 

Ending Institutionalization of People with 

Disabilities During and After Disasters 

National Council on Disability 

May 24, 2019
National Council on Disability (NCD)

1331 F Street NW, Suite 850

Washington, DC 20004

Preserving Our Freedom: Ending Institutionalization of People with Disabilities During and After 

Disasters

National Council on Disability, May 24, 2019

Celebrating 30 years as an independent federal agency

This report is also available in alternative formats. Please visit the National Council on Disability (NCD) 

website (www.ncd.gov) or contact NCD to request an alternative format using the following information:

ncd@ncd.gov Email

202-272-2004 Voice

202-272-2022 Fax

The views contained in this report do not necessarily represent those of the Administration, as this and 

all NCD documents are not subject to the A-19 Executive Branch review process.
1331 F Street, NW ■ Suite 850 ■ Washington, DC 20004

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National Council on Disability 

An independent federal agency making recommendations to the President and Congress to 

enhance the quality of life for all Americans with disabilities and their families.

Letter of Transmittal 

May 24, 2019

President Donald J. Trump

The White House

1600 Pennsylvania Avenue, NW

Washington, DC 20500

Dear Mr. President:

The National Council on Disability (NCD) is pleased to submit the enclosed report: Preserving 

Our Freedom: Ending Institutionalization of People with Disabilities During and After Disasters.

NCD has found that people with disabilities are frequently institutionalized during and after 

disasters. The report examines factors that lead to institutionalization. Then, most critically, it 

provides recommendations to eliminate institutionalization of people with disabilities during and 

after disasters. It also recommends how to improve community readiness to meet obligations 

that require equal access to emergency and disaster services and programs in the most 

integrated setting appropriate for disaster-impacted people. The report has been prepared by 

using information from daily local and national disability and disaster stakeholder 

teleconferences held at the height of disaster response and recovery, as well as focus groups 

and interviews with key informants about institutionalization of people with disabilities during 

and after disasters. The report also contains additional data from the Centers for Medicare and 

Medicaid and discovered data from the University of Minnesota Institute on Community 

Integration University Center on Excellence in Disabilities Residential Information Systems 

Project (RISP).

Initially, NCD intended for this report to focus primarily on factors that led to the 

institutionalization of disaster survivors with disabilities during and after disasters that occurred 

during the end of 2017 and the beginning of 2018. However, NCD has amassed a wealth of 

additional information about the factors that led to institutionalization of people with disabilities 

during and after Hurricane Florence, which made landfall in North and South Carolina during 

September 2018, and Hurricane Michael, which made landfall in Florida and Georgia in October 

2018. This information—collected through stakeholder calls in North and South Carolina, 

Georgia, and Florida, as well as via daily and weekly national calls—has also been included. In 

each of the disasters during 2017 and 2018, many disaster-impacted people with disabilities 

who were previously living in the community were institutionalized during or following the 

disaster. 

The Federal Government, as well as recipients and subrecipients of federal funds, are obligated 

under the Rehabilitation Act of 1973, 29 U.S.C. § 701 et seq (Rehab Act) to provide equal 

access to federally-funded programs and services, including those that are disaster-related. 
2 National Council on Disability

Additionally, the Americans with Disabilities Act of 1990 as amended 42 U.S.C. § 12101, et seq 

(ADA) imposes an obligation to provide equal access to disaster-related programs and services. 

Because people with disabilities have the right to equal access to disaster-related programs and 

services, they must not be institutionalized if services can be delivered in a more integrated 

setting that is appropriate to their needs. 

Once disaster survivors are institutionalized, it is difficult for them to return to the community. 

Sometimes, survivors who have been institutionalized cannot be located by loved ones, allies, 

and advocates. Additionally, the accompanying health deterioration that often accompanies 

institutional placement usually leads to the need for a more complex array of services while 

community resources have been depleted and previous support systems remain disrupted. 

Additionally, data shows it is more cost-effective to provide community-based services like 

accessible shelters versus institutionalization. In NCD’s 2009 report The Cost of 

Deinstitutionalization: Comparing the Cost of Institution Versus Community-Based Services, the 

average annual expenditure for a state institution was $188,318 compared to $42,486 for 

Medicaid funded home and community-based services.1 The fiscal disparity between the two 

options is staggering and further supports NCD’s recommendations in this report that 

institutionalization of persons with disabilities during and after disasters is not an economically 

sound option.

Institutionalization was not first witnessed in 2017 and 2018. It repeatedly occurred in previous 

disasters. There will be no remedy in future disasters without sweeping changes. 

Based on the findings of the report, NCD recommends that: 

 The Department of Justice (DOJ), the Department of Health and Human Services (HHS),

the Department of Homeland Security (DHS), and the Department of Housing and Urban

Development (HUD) monitor and enforce the Americans with Disabilities Act (ADA)

Olmstead integration mandate and the Rehabilitation Act obligation to use federal funds

in such a way that people are served in the most integrated setting appropriate to their

needs.

 All relevant federal agencies engage with national, state, and local coalitions of disabilityled organizations and stakeholders.

 DOJ assesses the equal access and non-discrimination civil rights compliance

performance of the American Red Cross and other shelter and mass-care providers in

relation to actions resulting in institutionalization of disaster survivors with disabilities.

 The Federal Emergency Management Agency (FEMA) explore ways to expeditiously

modify its Individual Assistance registration process to curtail the incidence of

institutionalization of individuals with disabilities.

 DHS/FEMA and HHS/Administration for Community Living (ACL) provide grant funds to

support Independent Living Centers in supporting disaster-impacted people with

disabilities in their community. (This funding should incorporate all five core services of

Independent Living Centers, including their obligation to prevent and divert

1 Lakin, K. C., S. Larson, P. Salmi, and A. Webster. (2010). Residential Services for Persons with Developmental 

Disabilities: Status and Trends through 2009. Research and Training Center on Community Living. Institute on 

Community Integration/UCEDD, College of Education and Human Development, University of Minnesota. Accessed 

July 21, 2011. http://rtc.umn.edu/docs/risp2009.pdf (accessed April 18, 2019). 
National Council on Disability 3

institutionalization of disaster-impacted people throughout disaster response and 

recovery.)

 Relevant federal agencies integrate disaster-related services for veterans with disabilities 

with all other emergency and disaster services in order to address the current gap in 

coordination. 

 Legislation be introduced and swiftly enacted to address all gaps in meeting the civil 

rights obligations to people with disabilities impacted by disasters.

NCD looks forward to working with the Administration, Congress, disaster-impacted people 

with disabilities, emergency managers, public health providers, disability community leaders, 

allies, and other stakeholders in ensuring that disaster-related institutionalization is eliminated 

and that all people with disabilities are provided equal access to emergency programs and 

services in the most integrated setting appropriate to their needs before, during, and after 

disasters.

Respectfully,

Neil Romano

Chairman

(The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate and the Speaker of the 

House of Representatives.)
4 National Council on Disability

National Council on Disability Members and Staff 

 

Members 

Neil Romano, Chairman

Andréas Gallegos, Vice Chairperson

Billy W. Altom

Rabia Belt

James T. Brett

Daniel M. Gade

Wendy S. Harbour

Benro T. Ogunyipe

Clyde Terry

Staff 

Phoebe Ball, Legislative Affairs Specialist

Stacey S. Brown, Staff Assistant

Joan M. Durocher, General Counsel & Director of Policy

Lisa Grubb, Executive Director

Netterie Lewis, Administrative Support Specialist

Amy Nichols, Attorney Advisor

Nick Sabula, Public Affairs Specialist

Amged Soliman, Attorney Advisor

Anne Sommers, Director of Legislative Affairs & Outreach

Ana Torres-Davis, Attorney Advisor

Keith Woods, Financial Management Analyst
National Council on Disability 5

Acknowledgments

The National Council on Disability wishes to express its deep appreciation to the Partnership for Inclusive 

Disaster Strategies, which conducted the primary research and writing of this report. NCD wishes to 

thank Marcie Roth, CEO of the Partnership for Inclusive Disaster Strategies, who was the principal 

investigator, and Melissa Marshall, who served as the Director of Research for this project. NCD 

acknowledges the contributions to the report by Paul Timmons, Board Chair, Portlight Inclusive Disaster 

Strategies; Elanah Sherman, Editor; Nick Marshall, Data Specialist; Richelle Brown, Research Assistant; 

Dustin Snowadzky, Technology Specialist; Jessica Justus, Office Manager; Ken Butler, Information and 

Technology Advisor; and the informants and stakeholders who shared their first-hand observations, 

personal experience, insights, and recommendations. Many were disaster survivors themselves; others 

were working on the ground in disaster-impacted communities; and still others served in leadership roles 

with entities charged with various aspects of disaster response and relief. Other invaluable information 

was drawn from callers to the Partnership Disaster hotline, as well as from hundreds of stakeholders, 

including local, state, and federal government staff who participated in teleconferences and focus 

groups, and those who coordinated and attended the Department of Homeland Security Office for Civil 

Rights and Civil Liberties (DHS CRCL) listening sessions.
6 National Council on Disability
National Council on Disability 7

Contents 

Executive Summary.................................................................................................................... 9

Summary of Key Findings and Recommendations ...............................................11

Conclusion.................................................................................................................13

Introduction ...............................................................................................................................15

Chapter 1: Occurrence of people with disabilities being institutionalized during and 

after disasters ............................................................................................................................21

Nursing home admissions after Hurricane Harvey (TX)........................................25

Nursing home admissions after Hurricane Irma (FL).............................................26

Utilization of institutional care associated with Hurricane Katrina (LA)...............27

Chapter 2: The detriments of institutionalizing people with disabilities during and after 

disasters.....................................................................................................................................31

Loss of freedom, independence, and equal opportunity.......................................31

Declines in health, well-being, and morbidity upon institutionalization during 

and after disasters ....................................................................................................32

The dangers of institutions for people with disabilities in disasters ....................33

Economic consequences of institutionalization .....................................................34

Chapter 3: Why people with disabilities end up institutionalized during and after 

disasters.....................................................................................................................................37 

Factors that lead to institutionalization during and after disasters ......................37

Conflicting guidance from federal agencies...........................................................42

Department of Justice (DOJ) ............................................................................42

Department of Homeland Security (DHS) .......................................................42

Office for Civil Rights and Civil Liberties (CRCL).......................................42

Federal Emergency Management Agency (FEMA)...................................42

Department of Health and Human Services (HHS).........................................43

Office for Civil Rights (OCR)........................................................................43

Office of the Assistant Secretary for Preparedness and Response 

(ASPR) ...........................................................................................................43

Centers for Disease Control and Prevention (CDC) ..................................44
8 National Council on Disability

Centers for Medicare and Medicaid (CMS) ...............................................45

Implementation shortfalls of emergency support functions................................. 46

Chapter 4: Practices to Curtail and Prevent Institutionalization ............................................67

Promising practices to curtail institutionalization during and after disasters .....67

Individualized accommodations as an approach to curtailing 

institutionalization during and after disasters........................................................70

Strategies for strengthening promising practices..................................................71

Chapter 5: Recommendations..................................................................................................73

Appendix 1.................................................................................................................................81

Appendix 2.................................................................................................................................87

Appendix 3.................................................................................................................................89

Appendix 4.................................................................................................................................91

Appendix 5.................................................................................................................................93

Appendix 6.................................................................................................................................95

Appendix 7.................................................................................................................................97

Appendix 8...............................................................................................................................103

Endnotes ..................................................................................................................................105
National Council on Disability 9

Executive Summary

n the process of gathering data for this report, 

the National Council on Disability (NCD) found 

that people with disabilities of all ages are 

institutionalized during and after disasters in 

assisted living facilities, rehabilitation centers, 

nursing homes, psychiatric institutions, and other 

long-term care facilities -- despite legal protections 

requiring that services are provided in the most 

integrated setting appropriate to the needs of the 

person. In almost every case, these disasterimpacted people were living in the community 

before disaster struck.

The cycle of disasterrelated institutionalization 

begins when people with 

disabilities are faced with 

the need to evacuate in a 

context of communitywide lack of access planning, inadequate support, 

and non-existent services at local shelters. 

Disability bias and misunderstanding about the 

rights and needs of disaster-impacted people with 

disabilities amplify the risk of institutionalization as 

a solution. Despite the Department of Justice 

(DOJ) 2007 guidance regarding the right of people 

with disabilities to be served in the most 

integrated setting appropriate to their needs in a 

disaster, NCD observed that in recent disasters, 

people with disabilities continued to be separated 

from their support system and segregated from 

the general population. 

Data shows the better use of federal dollars is 

to provide community-based services such as 

accessible shelters instead of opting for 

institutionalization. A 2009 NCD report titled The 

Cost of Deinstitutionalization: Comparing the Cost 

of Institution Versus Community Based Services, 

reported the average annual expenditure for a 

state institution was $188,318 compared to 

$42,486 for Medicaid funded home and 

community-based services.

1 The monetary 

disparity between the two is 

significant and further 

supports NCD’s 

recommendation that in 

addition to being a violation 

of rights, institutionalization 

of persons with disabilities during and after 

disasters is not economically sound.

The threat of disaster-related 

institutionalization has been an ongoing concern in 

the disability community for well over a decade. 

During Hurricane Katrina in 2005, NCD found that 

disaster response plans often did not include 

protocols to evacuate people with psychiatric 

disabilities. In that report, NCD considered a 

person with a disability to have been 

institutionalized if the person was living in the 

I

The threat of disaster-related 

institutionalization has been an 

ongoing concern in the disability 

community for well over a decade.
10 National Council on Disability

community the day before the disaster and did not 

return to home or a similar setting after the 

disaster.2 The report included recommendations to 

improve sheltering policies and procedures on the 

federal, state, and local level to ensure a better 

outcome for persons with disabilities during and 

after emergencies. Over 13 years later, NCD found 

that little had changed. 

The frequency and intensity of extreme 

weather and disasters is increasing. In 2017 and 

2018, there were 27 catastrophic disasters across 

the U.S. with over one billion dollars each in 

damage. According to the Federal Emergency 

Management Agency (FEMA), 47 million people 

were impacted by Hurricanes Harvey, Irma, and 

Maria,3 and according to the Center for Disease 

Control and Prevention (CDC), an estimated 12 

million of them were people with disabilities.4

 

In 2017, during 

Hurricane Harvey, the 

National Council on 

Independent Living 

reported “a disturbing 

trend of persons with 

disabilities who had lived in 

the community [who] were 

transferred to institutional settings, either due to 

lack of post-shelter housing options or because of 

the difficulties of navigating disaster recovery.”5

This trend has continued unabated, in part because 

the issuance of waivers by the Centers for 

Medicare and Medicaid (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. This report is in response to a 

lack of progress in ensuring that people with 

disabilities are not institutionalized in disasters.

This report: 

 Examines how, when, and why people with

disabilities were institutionalized during and

after recent disasters.

 Provides recommendations for appropriate

federal agencies to mitigate institutionalization

of persons with disabilities in future disasters.

 Illustrates the multiple scenarios in which

people with various types of disabilities are

institutionalized rather than sheltered in the

community or placed back into the

community following the disaster.

 Examines the systemic issues that continue

to cause institutionalization of persons with

disabilities, such as 

misperception of the abilities 

of people with disabilities; 

lack of actual physical access 

to shelters; insufficient 

staffing; and lack of expertise 

in shelters, leading to such 

problems as biased intake 

procedures. 

 Describes efforts to obtain data that

illuminates and quantifies the occurrence of

this issue.

 Discusses the grave short- and-long-term

physical, mental, and financial consequences

that institutionalization wreaks on a person

with a disability, as well as the financial

burden it places on the community in contrast

to the costs of in-community supports.

47 million people were impacted 

by Hurricanes Harvey, Irma, and 

Maria, and according to the [CDC], 

an estimated 12 million of them 

were people with disabilities.
National Council on Disability 11

 Provides recommendations and promising 

practices that would enable federal agencies 

to eliminate institutionalization of persons 

with disabilities during future disasters.

Summary of Key Findings and Recommendations 

Key Findings

People with disabilities are still being institutionalized during and after disasters. There are 

myriad reasons for this including:

 The Federal Government continues to issue conflicting guidelines about the institutionalization of 

people with disabilities. For example, the Department of Justice (DOJ) in their 2007 Americans 

with Disabilities Act (ADA) Tool Kit states that “people should receive services in the most 

integrated setting appropriate to the needs of the person, and only persons who require the type 

and level of medical care that would ordinarily be provided by trained medical personnel in a 

nursing home or hospital” should be placed in those more restrictive settings. In contrast, the 

Department of Health and Human Services (HHS) Centers for Medicare and Medicaid Services 

repeatedly issues waivers to their institutional placement rules during disasters, allowing states to 

place disaster-impacted people with disabilities in nursing homes and other institutional settings.

 People with disabilities do not have equal access to emergency and disaster-related programs and 

services, leading to deterioration of health and safety, and loss of independence. This occurs 

despite the fact that federal funds are required to be spent in compliance with the equal access 

requirements of the Rehabilitation Act of 1973, 29 U.S.C. § 701 et seq and the Americans With 

Disabilities Act of 1990 as amended, 42 USC § 12102.

 Recipients of federal funds do not have training in how to comply with the Rehabilitation Act’s 

mandate to provide equal access when using federal dollars and do not have training in how to 

interact with people with disabilities without adhering to a medical-model bias that leans toward 

institutional placement.
12 National Council on Disability

Key Recommendations, continued

 Congress should reintroduce legislation that expands upon the Readying Elders and Americans 

with Disabilities Inclusively for Disasters Act of 2018 (2018 READI for Disasters Act) S.3679. 

 All relevant federal agencies should engage with national, state, and local coalitions of disability-led 

organizations and stakeholders.

 FEMA should update the National Response Plan; Federal Emergency Support Functions and 

Federal Interagency Operations Plans; Public Health Emergency; and all other applicable federal 

directives to specifically address responsibility for meeting the equal access, health maintenance, 

safety, and independence needs of children and adults with disabilities in order to prevent 

institutionalization.

 FEMA Emergency Support Function Leaders Group (ESFLG) should establish a seamless and 

integrated process in Emergency Support Functions #6 and #8 to prioritize health maintenance for 

children and adults with disabilities and seamlessly deliver services and supports to people in the 

most integrated setting throughout evacuation, temporary housing, and disaster recovery.

 DOJ and HHS should monitor and enforce the ADA Olmstead integration mandate and 

Rehabilitation Act obligation to use federal funds in compliance with requirements to serve people 

in the most integrated setting appropriate to their needs.

 DOJ should monitor and enforce civil rights compliance throughout all disaster-related placement 

decisions made by recipients and subrecipients of federal financial assistance.

 HHS (CMS) in collaboration with all other federal entities with admission and monitoring or 

funding and reimbursement obligations should maintain responsibility for ensuring that all 

admissions to hospitals and long-term care facilities during and after disasters are monitored and 

that the people placed are provided with the assistance needed to return to their community with 

all supports and services they need to regain and maintain their independence.

 DOJ should monitor and enforce civil rights compliance with Titles II and III of the ADA regarding 

sheltering.

 DOJ and HUD should monitor and enforce compliance with obligations for emergency sheltering 

in a disaster consistent with all other emergency sheltering requirements under the Fair Housing 

Act Amendments (FHAA). (Whether the disaster shelter is considered transient or long-term, the 

rights of people with disabilities in these shelters should be seamlessly protected.)

 DOJ should assess the equal access and non-discrimination civil rights compliance performance 

of the American Red Cross and other shelter and mass care providers in relation to their actions 

resulting in institutionalization of disaster survivors.
National Council on Disability 13

Key Recommendations, continued

 FEMA should explore ways to expeditiously modify its Individual Assistance registration process 

to curtail the incidence of institutionalization of individuals with disabilities. 

 Federal agencies with disaster response and recovery responsibilities should immediately place 

disability civil rights experts identified from the National Qualification System in all FEMA Joint 

Field Offices and Area Field Offices.

 DHS/FEMA and HHS/ACL should provide grant funds to Independent Living Centers to support 

disaster-impacted people with disabilities in their communities. (This funding should apply to the 

five Independent Living Center core services, including the obligation to prevent and divert the 

institutionalization of disaster-impacted people throughout disaster response and recovery.)

 Relevant federal agencies should integrate disaster-related services for veterans into all other 

emergency and disaster services to address the current gap in coordination between services for 

veterans with disabilities and services for other people with disabilities.

Conclusion

Immediate and sustained action is required 

to ensure that the rights of over 61 million 

people with disabilities6 equally benefit from 

emergency and disaster programs and 

services even in the most challenging days of 

their lives.
14 National Council on Disability
National Council on Disability 15

Introduction

very time a hurricane makes landfall or 

wildfires ravage a community, people with 

disabilities find themselves subject to 

involuntary institutionalization during and after 

these catastrophic events, despite federal statutes 

prohibiting unnecessary institutionalization. 

Examples include:

 A young man with a spinal cord injury in North 

Carolina was evacuated from his flooded 

apartment, then he was turned away from a 

shelter and sent to a nursing home.

 A woman with a mobility disability in a Texas 

shelter gathered with a group of others with 

disabilities and was told that they “must” go 

to a nursing home. She refused and left the 

area. When she returned, the rest of the 

group was gone; no one had knowledge of 

their destination.

 Possibly because of shelter conditions, 

people in North Carolina with chronic

respiratory conditions were hospitalized while 

staying in a ‘special medical needs’ shelter.

These are a few examples of people with 

disabilities who were living independently in the 

community prior to disasters that occurred in 

2017-18 and who were institutionalized (or who 

narrowly escaped institutionalization), either by 

virtue of the fact that they had a disability and 

needed accommodations in a disaster, or because 

their disability had been exacerbated by lack of 

equal access to disaster-related programs and 

services.

Despite civil rights protections by federal 

statute prohibiting unnecessary institutionalization 

(and despite the specific prohibition against 

waiving this protection during disasters), disasterimpacted people with disabilities are frequently 

institutionalized during and after disasters. This 

report will serve as a resource for preventing 

institutionalization of people with disabilities during 

and after disasters. It will be of value to national, 

state/territory, county, and municipal leaders, as 

well as people with disabilities, allies, and other 

stakeholders. After providing an overview of the 

problem, the report examines factors that lead to 

institutionalization. Then, most critically, it provides 

recommendations to eliminate institutionalization 

of people with disabilities during and after 

disasters.

Initially, NCD intended for this report to focus 

primarily on factors that lead to the 

institutionalization of disaster-impacted people 

with disabilities during and after disasters that 

occurred during the end of 2017 and the beginning 

of 2018. However, NCD amassed a wealth of 

additional information about the factors that led to 

institutionalization of people with disabilities during 

and after Hurricane Florence, which made landfall 

in North and South Carolina during September 

2018 and Hurricane Michael, which made landfall

E
16 National Council on Disability

in Florida and Georgia in October 2018. This 

information was collected through stakeholder 

calls in North and South Carolina, Georgia and 

Florida, as well as national calls held daily for the 

first three weeks and then on a less frequent 

basis.

In each of the disasters during 2017 and 2018, 

many disaster-impacted people with disabilities 

who were previously 

living in the community 

were institutionalized 

during or following the 

disaster.

Institutionalization is 

often an outcome of 

unequal access to 

disaster services. 

Factors that may lead to 

unnecessary 

institutionalization 

include lack of access to 

power and medical 

necessities, including medical treatment and 

supplemental oxygen; medication; consumable 

supplies; and medical equipment. Factors also 

include lack of equal access to food that meets 

dietary needs; potable water; and services offered 

by federal, municipal, county, and state/territory 

government. Disaster-impacted people with 

disabilities, including older adults, are at risk of 

institutionalization at all points of emergency 

response and recovery. One key point of action 

which has led to institutionalization is transitioning 

from temporary settings to more permanent 

solutions, such as from a shelter to temporary 

housing. Institutionalization is also more likely 

when returning home is delayed or impossible 

because of extended disruption in services or the 

significant damage to the home or community.

People with disabilities have legal protections 

under the Rehabilitation Act of 1973, 29 U.S.C. § 

701 et seq (Rehab Act); the Americans with 

Disabilities Act of 1990 as amended 42 U.S.C. § 

12101, et seq (ADA); and the Stafford Act, 42 

U.S.C. §5151 et seq. 

Under the ADA, as 

interpreted through the 

Olmstead Supreme 

Court Decision 

(Olmstead v. L.C., 527 

U.S. 581), people with 

disabilities have the 

right to equal access to 

disaster-related services 

and must not be 

institutionalized when 

they may receive 

services in a more 

integrated setting that is appropriate to their 

needs. This means there is an obligation on the 

part of the Federal Government and recipients and 

subrecipients of federal funds to provide equal 

access to federally funded programs and services, 

including disaster-related programs and services, 

under the Rehabilitation Act. Additionally, there is 

an obligation to provide equal access to disasterrelated programs and services under the ADA.

Federal funding is used throughout 

preparedness, response, recovery and mitigation. 

Local decisions on how to allocate those federal 

funds directly correlates to persons with disabilities

being institutionalized during and after disasters. 

[T]here is an obligation on the part of 

the Federal Government and recipients 

and subrecipients of federal funds to 

provide equal access to federally funded 

programs and services, including 

disaster-related programs and services, 

under the Rehabilitation Act. 

Additionally, there is an obligation to 

provide equal access to disaster-related 

programs and services under the ADA.
National Council on Disability 17

“Entities selected to receive a grant, 

cooperative agreement, or other award of Federal 

financial assistance from the U.S. Department of 

Homeland Security (DHS) or one of its 

Components, including State Administering 

Agencies must comply with civil rights obligations. 

Sub recipients have the same obligations as their 

primary recipient to comply with applicable civil 

rights requirements and should follow their 

primary recipient’s procedures regarding the 

compliance with civil rights obligations.”7

Subrecipients of federal funds routinely include 

entities that provide emergency protective measures 

for life saving and life sustaining needs and the 

ongoing disaster-related needs of disability impacted 

people with disabilities. These include local 

government, shelter operators, transportation

services, hospitals, medical providers and many 

other emergency support providers.

Recommendation: NCD recommends that Congress enact legislation by expansion of the 

previously introduced 2018 Real Emergency Access for Aging and Disability Inclusion in 

Disasters (READI for Disasters Act), and the 2019 Real Emergency Access for Aging and 

Disability Inclusion in Disasters Act (REAADI in Disasters Act).

Recommendation: NCD recommends Congress request a report from the Government 

Accountability Office (GAO) to investigate whether past federal disaster funds have been used 

to ensure accessibility to emergency programs and services.

Recommendation: NCD recommends that DOJ provide pointed guidance to sister federal 

agencies to address the issue of outdated regulations that conflict with the Olmstead 

integration mandate. 

Recommendation: NCD recommends that DOJ assesses the equal access and nondiscrimination civil rights compliance of the American Red Cross and other shelter and mass 

care providers in relation to actions resulting in institutionalization of disaster survivors.

When people with disabilities do not have 

equal access to disaster-related programs and 

services, an array of cascading events occur that 

may lead to institutionalization. Existing systems 

crumble; health may deteriorate; effective 

communication for people with visual, hearing, 

cognitive, and speech disabilities ceases; and 

other systemic gaps are exacerbated. For 

example, a disaster-impacted person chooses to 

shelter in place because the community shelter 

does not have wheelchair-accessible restrooms. 

This person’s health deteriorates in their badly 

damaged home, resulting in a need for 

hospitalization, which results in institutionalization. 

A less apparent example is a lack of qualified sign 

language interpreters that results in shelter staff 

referring a Deaf person to a psychiatric institution 

because the person is assumed to have a mental 
18 National Council on Disability

health condition rather than a need for an 

interpreter. Lack of equal access to disasterrelated programs and services is not only a 

violation of the law, but a fundamental precursor to 

institutionalization. As discussed above, 

institutionalization may constitute a violation of 

disability civil rights law when services may 

alternatively be provided in a more integrated 

setting.

Once a disaster survivor is 

institutionalized, it is difficult 

for them to return to the 

community. Sometimes, 

survivors who have been 

institutionalized cannot be 

located by loved ones, allies, and advocates. 

Additionally, the accompanying health deterioration 

that is inherent in institutional placement leads to the 

need for a more complex array of services while 

community resources have been depleted and 

previous support systems remain disrupted. 

Institutionalization is a phenomenon not only 

witnessed in 2017 and 2018. It has occurred 

repeatedly in previous disasters. There is no 

indication that this will be remedied in future 

disasters without sweeping changes. These 

changes must occur through planning, 

implementation, monitoring, and enforcement of 

federal obligations to provide equal access. They 

must include physical, program, and effective 

communication access, as well as modifications to 

policies, practices and procedures to avoid 

discrimination before, during and after disasters.

Institutionalization of 

people with disabilities in 

disasters indicates failure on

multiple levels of the 

government, of NGOs, and 

other collaborators who 

share the responsibility of 

providing equal access to emergency services and 

programs to disaster-impacted people with 

disabilities in their communities. This report 

examines the matrix of misunderstanding, 

miscommunication, contradiction, and deficient 

public policy that leads to wrongful 

institutionalization of people with disabilities during 

and after disasters; it also proposes actions that, if 

implemented, may eliminate potentially 

discriminatory practices.

Lack of equal access to disasterrelated programs and services is 

not only a violation of the law, 

but a fundamental precursor to 

institutionalization.
National Council on Disability 19

Decision-making regarding who, when, and why 

disaster survivors with disabilities end up in 

segregated shelters requires those making 

decisions to interpret complex and contradictory 

sets of guidance from multiple federal agencies 

(DOJ, DHS, HHS). It is difficult to imagine how 

lawmakers, local government emergency 

managers, and shelter operators could arrive at 

decisions about who goes to segregated shelters 

in anything but an arbitrary way.
20 National Council on Disability
National Council on Disability 21

Chapter 1: Occurrence of people with disabilities being 

institutionalized during and after disasters

his report examines occurrences of 

institutionalization of people with 

disabilities, as well as threats of 

institutionalization that were thwarted by disability 

advocates, in 2017 and 2018. The disasters 

included Hurricanes Harvey, Irma, Maria, Florence, 

and Michael, and the California wildfires. During 

these time periods, the NCD research team was 

alerted via disaster hotline calls and stakeholder 

teleconferences that people with disabilities were 

being referred and admitted to institutions, as well 

as being threatened with institutionalization. 

In preparing this report, the NCD research 

team interviewed key informants from FEMA; Red 

Cross; municipal offices for people with 

disabilities; Centers for Independent Living; 

State/Territory Independent Living Councils; State 

and Territory Protection and Advocacy systems; 

and State/Territory University Centers for 

Excellence in Developmental Disability. Most key 

informants agreed that people with disabilities 

were institutionalized during and after disasters. 

One key informant from the U.S. Virgin Islands 

reported that he was more aware of untimely, 

preventable death in the aftermath of the 

hurricanes than the occurrence of 

institutionalization. He referenced the hundreds of 

people who were evacuated to Puerto Rico during 

Hurricane Irma, and then further evacuated to 

Atlanta, Georgia after dialysis delivery and other 

medical systems failed during Hurricane Maria. 

This informant pointed out that many had not 

returned. Informants reported that many of those 

who did survive were placed in long-term care 

facilities even though they had previously lived 

independently in the community.

NCD conducted two focus groups comprised 

of disaster survivors and key informants from 

disability organizations. Special attempts were 

made to enlist input from disaster survivors who 

were institutionalized or threatened with 

institutionalization. Stakeholders advised that 

these people were reluctant to discuss their 

harrowing and traumatic experiences. Further 

outreach efforts were immediately halted to avoid 

re-traumatization. 

Throughout each focus group discussion, 

participants concurred that people with disabilities 

were institutionalized during and after disasters. 

One stakeholder reported advocating for a Texas 

resident who was threatened with guardianship in 

order to hold him against his will in a nursing 

home. This attempt at forced institutionalization 

was thwarted by attorneys from the Texas 

Protection and Advocacy System. During the focus 

group conducted in Puerto Rico, key informants 

reported that disaster-impacted people with 

disabilities weren’t institutionalized primarily 

T
22 National Council on Disability

because institutions weren’t functioning. Because 

hospitals also weren’t functioning, they were not 

used for sheltering, either; indeed, many 

evacuated their patients to the mainland. One 

group of young children who required 

uninterrupted power for medical devices were 

evacuated by private air services, coordinated by 

hospital physicians, to Florida and Texas. When 

they arrived on the mainland, they learned they 

were ineligible for hospital admission simply for 

access to an uninterrupted power source; they had 

nowhere else to go and at least one parent was 

threatened with having her child removed from her 

care and placed in a nursing facility because she 

(the evacuated parent) was considered homeless. 

Additionally, the parent 

was advised that their 

Puerto Rico-issued 

Medicaid was not 

portable and they were 

not eligible for Florida 

Medicaid since they did 

not reside in the state 

prior to the disaster. To 

make matters worse, 

when advocates asked 

FEMA to assist this 

family, they were told, during a national 

stakeholder call, that the family was ineligible for 

FEMA assistance because they had not evacuated 

‘correctly.’ The lack of Medicaid portability 

repeatedly came up on stakeholders’ calls and was 

mentioned by key informants from Puerto Rico, 

the U.S. Virgin Islands and Florida (including during 

Hurricane Michael evacuation) as a critical issue 

that was impeding health care for disaster 

impacted people with disabilities. Denial of

Medicaid coverage can cause people with 

disabilities to lose their health, safety and 

independence, which may ultimately lead to 

hospitalization and nursing home admission. 

Recommendation: NCD recommends that 

Congress require CMS to establish a process 

for Medicaid portability among states and 

territories during disasters to ensure 

uninterrupted health maintenance and medical 

care in the least restrictive environment for 

Medicaid recipients.

The National Council on Independent Living 

(NCIL) developed a 

report in the fall of 

2017 on Hurricane 

Harvey stating that, 

“There was a 

disturbing trend of 

people with disabilities 

who had lived in the 

community being 

transferred to 

institutional settings, 

either due to lack of 

post-shelter housing options or due to the 

difficulties of navigating disaster recovery.”8

Even though unnecessary institutionalization of 

people with disabilities may constitute a violation of 

civil rights that cannot be waived, the Federal 

Government sanctioned it by issuing waivers through 

CMS. The purpose of the waivers was to expedite 

admission of people to nursing homes based on 

hospital needs, sheltering needs, and other factors 

One group of young children [from 

Puerto Rico] who required uninterrupted 

power for medical devices were 

evacuated ... to Florida and Texas. [One] 

parent was advised that their Puerto 

Rico-issued Medicaid was not portable 

and they were not eligible for Florida 

Medicaid since they did not reside in the 

state prior to the disaster.
National Council on Disability 23

completely unrelated to the health and well-being of 

people with disabilities. This topic is discussed in 

Chapter 3. Clearly, people with disabilities were 

institutionalized during and after disasters as a direct 

result of these waivers.

Specific instances of institutionalization that

surfaced during the development of this report and 

the After-Action Report are alarming. Equally 

alarming is the likelihood that many neveridentified people with disabilities were also 

institutionalized. Several key informants and focus 

group members stated that the process of 

identifying and locating people with disabilities 

who were institutionalized during disasters may 

take years. For 

example, CNN 

reported that 

Jefferson County, 

Texas Judge Jeff 

Branick stated that 

“One thousand 

people with special 

needs [were] taken to 

Galveston airport and 

will be removed to 

other locations for 

‘specialized care.’”9 There is no available 

information as to their outcome or their location. 

Such circumstances are particularly likely for 

people who do not communicate verbally and/or 

have intellectual or cognitive disabilities, such as 

dementia.

Disaster hotline callers reported that people 

with disabilities were escorted en masse out of 

the George R. Brown Center, a general population 

community shelter, without a clear idea of where 

they were going and possibly without the 

opportunity to tell family members and friends in 

the shelter that they were leaving. As frequently 

reported during stakeholder teleconferences, a 

similar situation occurred in Bay County, Florida 

during Hurricane Michael at both general and 

‘special needs’ shelters. 

Disaster-impacted people with disabilities get 

separated from family, friends, and neighbors 

when they go to segregated ‘special 

needs’/’special medical needs’ shelters. After 

separation, loved ones may not know when the 

person left the shelter 

and the name and 

location of the 

institution to which the 

person with a disability 

was sent. Information 

about where people 

with disabilities were 

sent or discharged to is 

not consistently tracked 

and shared by shelters, 

Disaster Medical 

Assistance Teams, Red Cross, emergency 

managers, or any other entity. In fact, key 

informants report that sometimes there is no 

record of transfers at all. One key informant 

mused that if logistics companies can track 

packages with precision, we should be able to 

track disaster-impacted people with disabilities at 

least as well. 

Disaster-impacted people with disabilities 

get separated from family, friends, and 

neighbors when they go to segregated 

‘special needs’/’special medical needs’ 

shelters. After separation, loved ones may 

not know when the person left the shelter 

and the name and location of the 

institution to which the person with a 

disability was sent.
24 National Council on Disability

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; the 

period of CMS 1519 

waivers; and other 

disaster-associated 

circumstances during 

and after a disaster. 

States and territories do 

not track this data, either.

In preparing this report, NCD sought to 

obtain, compile, and analyze data about the 

movement of disaster-impacted people with 

disabilities to hospitals, nursing homes, 

assisted living facilities, and other institutional 

care settings. NCD requested via phone and in 

writing all relevant data from several federal 

and state agencies involved in the movement, 

relocation, placement, care, or funding of 

disaster-impacted people. Data was requested 

from: DHS; FEMA; HHS; CMS; ACL; Office of 

the Assistant Secretary for Preparedness and 

Response (ASPR); CDC; Long-Term Care 

Ombudsman’s Offices in Texas, Florida, U.S. 

Virgin Islands, and Puerto Rico.

NCD submitted Freedom of Information Act 

requests to CMS and to each federal office, 

followed by a request 

from the chairman of 

NCD. These letters 

appear in the Appendix. 

The aforementioned 

agencies, except ACL, 

either responded stating 

they had no data or did not respond at all to NCD's 

data request. 

In the absence of data from entities providing 

services and/or payment, NCD accessed the data 

available on the HHS CMS website. That data 

lacked sufficient specificity for the purpose of this 

research. 

However, NCD was able to locate publicly 

available data indicating significant increases in 

nursing home census numbers after Hurricanes 

Harvey and Irma.

However, NCD was able to locate 

publicly available data indicating 

significant increases in nursing home 

census numbers after Hurricanes 

Harvey and Irma.
National Council on Disability 25

Graph 1

See 10, 11, and 12

Nursing home admissions after 

Hurricane Harvey (TX) 

Graph 1 shows an uptick in nursing home 

admissions after Hurricane Harvey made landfall in

Texas. There are brief downticks that coincide with 

the Thanksgiving and Christmas holidays. Data in 

this graph reflects only the nursing facilities which 

reported data for all quarters covered in the chart.
26 National Council on Disability

Graph 2

See 13 , 14, and 15

Nursing home admissions after 

Hurricane Irma (FL) 

Graph 2 shows an uptick in nursing home 

admissions after Hurricane Irma made landfall in 

Florida. Data in this graph reflects only the 

nursing facilities which reported data for all 

quarters covered in the chart.
National Council on Disability 27

Graph 3

See 16

Utilization of institutional care 

associated with Hurricane Katrina 

(LA) 

NCD also obtained material from the 

University of Minnesota Institute on Community 

Integration University Center on Excellence in 

Disabilities Residential Information Systems 

Project (RISP) describing findings of increased 

institutionalization of people with intellectual and 

developmental disabilities impacted by 

Hurricane Katrina in 2005.

The findings from the RISP showed that 

there was a measurable change in utilization of

Intermediate Care Facilities for Individuals with 

Intellectual Disabilities (ICF/IID) of 7 or more 

and 16 or more people in Louisiana associated 

with Hurricane Katrina. (See Graph 3)17

 Between 2002 and 2005, the number of 

people in ICF/IID facilities of 16 or more 

people declined by an average of 90 

people per year. Between June 30, 

2005 and June 30, 2006, the number 

declined by only 40 people. Between 

2006 and 2009, the number declined by 

an average of 183 people per year.18

 Between 2002 and 2005, the number of 

people in ICF/IID settings of 7 to 15 

people declined by an average of 11 

people per year. Between June 30, 

2005 and June 30, 2006, the number 

increased by 134 people. Between 

2006 and 2009, the number declined by 

an average of 135 people per year.19
28 National Council on Disability

Graph 4

See 20

Graph 4 clearly illustrates the disruption 

of deinstitutionalization caused by Hurricane 

Katrina and the increase in ICF/IID facility 

placement to levels equal in numbers from 

the initiation of deinstitutionalization in 

2000.21

Hurricane Katrina temporarily disrupted the 

deinstitutionalization process in Louisiana after 

making landfall on August 29, 2005. This slowed 

the rate of downsizing for ICF/IID facilities of 16 

or more people, and temporarily increased the 

use of ICF/IID settings of 7 to 15 people.22

Interviews, disaster hotline calls, and 

teleconferences produced many examples of 

institutionalization and threats of institutionalization 

of people with disabilities. In North Carolina during 

Hurricane Florence, people with mobility 

disabilities were admitted to nursing homes 

because they could not get access to health 

maintenance services, such as physical therapies, 

in their communities. People with Chronic 

Obstructive Pulmonary Disease (COPD) and other 

respiratory conditions were admitted to hospitals 

after staying in a segregated shelter.

Recommendation: NCD recommends that 

HHS provides funding to the University of 

Minnesota Institute on Community Integration 

University Center on Excellence in Disabilities 

Residential Information Systems Project (RISP)

to expand their research on institutionalization 

during and after disasters in all states and 

territories to include people with all types of 

disabilities.
National Council on Disability 29

In South Carolina, also during Hurricane 

Florence, an emergency manager suggested that 

a person requiring a personal care assistant be 

institutionalized if that person was not able to 

identify personal care assistants who would 

provide care during sheltering.

During Hurricane Harvey, a woman in Texas 

with a mental health disability was 

institutionalized 

ostensibly because of 

trauma from the 

disaster. She was 

discharged from the 

hospital with 

prescriptions for which 

she could not afford the 

copay. By the time a disaster hotline operator 

persuaded the pharmacy to accept a credit card, 

she was re-institutionalized. 

A disaster hotline caller from Texas who had 

been in the George R. Brown Convention 

Center shelter after Hurricane Harvey was told 

she was being sent to a nursing home with a 

group of other shelter residents. She refused 

and left the area. When she returned, the others 

were gone. No one knew where they had been 

sent. Another disaster hotline caller requested 

assistance for several people who had been 

evacuated to a nursing home several hundred 

miles from their Texas residence. No accessible 

transportation was provided for the return trip to 

their undamaged home. The people were 

unable to leave the nursing home until funding 

for their transportation was secured. 

Key informants in Puerto Rico reported that 

local hospitals became de facto shelters for 

people with disabilities when they had nowhere 

else to go during Hurricane Maria. Others in 

Puerto Rico and the U.S. Virgin Islands reported 

that the loved ones of people with disabilities 

who evacuated from the territories in Hurricane 

Maria still could not account for their relatives 

with disabilities.

Key informants in 

Florida expressed 

concerns that 

Hurricanes Irma and 

Michael survivors with 

disabilities were 

transferred to assisted 

living or nursing facilities upon discharge from 

‘special needs’ shelters. The informants 

reported that they were unable to track the 

whereabouts of these survivors. A disaster 

hotline caller from Florida reported that she was 

forced to institutionalize a relative whom she 

was caring for because his care needs were too 

great once their home was destroyed.

During and after Hurricane Michael, people 

with disabilities were moved from shelter to 

shelter, and frequently placed in assisted living 

facilities across the state. Independent Living 

Center staff repeatedly attempted to keep track 

of and maintain contact, however staff 

members were routinely denied information 

about movement, as well as access to the 

people with disabilities and the location of the 

facilities in which they were housed.

Others in Puerto Rico and the U.S. Virgin 

Islands reported that the loved ones of 

people with disabilities who evacuated 

from the territories in Hurricane Maria 

still could not account for their relatives 

with disabilities.
30 National Council on Disability

There are consistent indicators of the use of 

institutional placement for disaster-impacted 

people with disabilities coupled with the lack of 

any system or process for documenting 

displacement. 

Recommendation: NCD recommends that 

Congress appropriate funds for FEMA, HHS 

(ACF and ACL) and HUD to fund Independent 

Living Center staff and other affordable and 

accessible housing experts to provide 

individual and household disaster case 

management focused on the transition and 

permanent housing needs of disasterimpacted people with disabilities.

After Hurricane Michael, people with 

disabilities in Florida who were offered 

Temporary Sheltering Assistance in hotels and 

other settings by FEMA were not provided 

personal assistant services, accessible 

transportation, and other required 

accommodations, rendering them unable to 

maintain health, safety, and independence and 

subjecting them to hospitalization and 

institutionalization.

Recommendation: NCD recommends that 

Congress require that 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.

It is likely that the people described above 

would not have been institutionalized if their 

right to equal access to federally-funded 

disaster-related programs and services and their 

right to receive services in the most integrated

setting had been provided.
National Council on Disability 31

Chapter 2: The detriments of institutionalizing people 

with disabilities during and after disasters

nstitutionalization of people with disabilities 

during and after disasters is detrimental on 

multiple levels. It robs people with disabilities 

of autonomy; may be a violation of their civil rights; 

and may produce negative health outcomes. In 

addition to impacting personal resiliency, it also 

impacts family and community resiliency.

Loss of freedom, independence, and 

equal opportunity 

The civil rights of people with disabilities are 

protected under the Rehabilitation Act, the ADA, 

and the Stafford Act. Not only is unnecessary 

institutionalization a breach of the autonomy of 

disaster survivors with disabilities, it is prohibited 

under Title II of the ADA as interpreted in the 

Olmstead Supreme Court decision. Under 

Olmstead, people with disabilities must receive 

services in the setting most 

appropriate for that person. 

Failure to provide people 

with disabilities equal 

access to disaster-related 

programs and services may 

be a violation of the equal rights provisions of the 

ADA, Rehabilitation Act, Stafford Act, and 

state/territory disability rights laws. Further, civil 

rights are not suspended during disasters, as 

explicitly confirmed in the National Preparedness 

System and its frameworks.23

“Entities selected to receive a grant, 

cooperative agreement, or other award of federal 

financial assistance from the U.S. Department of 

Homeland Security (DHS) or one of its 

components, including State Administering 

Agencies, must comply with civil rights 

obligations. Subrecipients have the same 

obligations as their primary recipient to comply 

with applicable civil rights requirements and should 

follow their primary recipient’s procedures 

regarding the compliance with civil rights 

obligations.”24

Of all the potential denials of equal 

opportunity, unnecessary institutionalization 

constitutes the greatest 

deprivation of liberty. 

Institutionalization of 

people with disabilities 

during and after disasters is 

typically not the result of a 

single failure of equal 

opportunity. It is more often the result of a series 

of failures to provide a person with equal access to 

disaster-related programs and services throughout 

the disaster process.

I

Of all the potential denials of equal 

opportunity, unnecessary 

institutionalization constitutes the 

greatest deprivation of liberty.
32 National Council on Disability

By the time a person reaches the point of being 

unnecessarily institutionalized, they have likely had 

their civil rights violated repeatedly, and 

intensively. Violations that lead to 

institutionalization often arise on a local level as a 

result of poor planning, which includes knocks on 

doors to notify Deaf people of an evacuation; 

requiring people with mobility and stamina issues 

to wait in line for food and water; and lack of 

durable medical equipment in shelters. These 

denials of equal opportunity, particularly when 

combined with other denials of equal opportunity, 

may result in institutionalization. In order to 

prevent unnecessary institutionalization, equal 

access to disaster-related programs and services 

must be addressed on a local, county, 

state/territory, and national level. In addition to 

being deprived of equal access to disaster-related 

programs and services, disaster-impacted people 

with disabilities are impacted by broad social 

inequities and policy deficiencies, including poverty 

and the lack of affordable, accessible housing.

Declines in health, well-being, and 

morbidity upon institutionalization 

during and after disasters 

The trend over the past several decades has 

been to close and move people out of psychiatric 

institutions and institutions for people with 

intellectual and developmental disabilities. 

Evidence shows that nursing homes are 

particularly dangerous places to live during 

disasters. The U.S. Senate report “Sheltering in 

Danger: How Poor Emergency Planning and 

Response Put Nursing Home Residents at Risk 

During Hurricanes Harvey and Irma” (November 

2018) addressed the dangers people in nursing 
National Council on Disability 33

homes and assisted living facilities face during and 

after disasters.25 These factors are discussed in 

more detail in the section that follows.

Several studies indicate that people have a 

higher quality of life in the community than in 

nursing homes. One study found that “Residents 

of institutions more often reported problems with 

mobility, selfcare and usual activities.”26 Another 

study found that “older adults with cognitive 

impairment living at home experienced higher 

quality of life, had 

better cognitive 

function, were less 

depressed, and 

reported higher social 

connectedness 

compared to those 

living in institutional 

care.”27 A separate 

study of people who had been approved for 

nursing home placement reported that “findings 

from this study continue to show that the majority 

of older adults in our sample were able to maintain 

community tenure following an application for 

nursing facility placement. In addition, the 

unexpectedly high rates of successful community 

tenure have been realized without intensive use of 

state publicly funded services.”28 Other 

documentation clearly demonstrates that people 

with disabilities have a strong preference for living 

in the community.29

To improve the opportunity for people with 

disabilities to live in the community, Congress 

passed—and CMS implemented—Money Follows 

the Person (MFP), a Rebalancing Demonstration 

Grant that has supported over 75,000 people30 to 

move out of nursing homes and back into the 

community. MFP was established in recognition of 

people’s strong preference to live in the 

community; the obligation under the Olmstead 

decision to provide service in the most integrated 

setting appropriate to the needs of the person with 

a disability; and the great cost savings of 

community living. The unnecessary 

institutionalization of 

disaster-impacted 

people with disabilities 

flies in the face of the 

Olmstead decision, it 

goes against the 

national policy to 

rebalance service 

delivery in favor of 

home and community based services, which are 

more cost-effective, preferred by people with 

disabilities, and in compliance with antidiscrimination law.

The dangers of institutions for people 

with disabilities in disasters 

Institutions are dangerous for people with 

disabilities during and after disasters. Media 

outlets widely reported poor conditions in nursing 

homes and assisted living facilities that led to 

deteriorated health, injury, and death during and 

after the 2017 disasters.31 A photo taken of 

residents of the Bella Vita assisted living facility in 

Dickinson, Texas, waist deep in flood water 

Another study found that “older adults 

with cognitive impairment living at home 

experienced higher quality of life, had 

better cognitive function, were less 

depressed, and reported higher social 

connectedness compared to those living 

in institutional care.”
34 National Council on Disability

following Hurricane Harvey, garnered widespread 

attention.

32

The dangers associated with living in nursing 

homes and assisted living facilities during and after 

Hurricanes Harvey and Irma in Texas and Florida 

are corroborated in the Senate Report (November 

2018), noted above. The 

report’s “investigation 

cataloged a series of 

missteps, poor 

emergency planning, 

and faulty 

communication 

strategies that contributed to the misery and the 

preventable deaths of nursing home residents.”33

Findings in Texas include that “the evacuation of 

the Lake Arthur Place nursing home was marked 

by the use of physical force, intimidation, and 

ultimately physical restraint by local law 

enforcement officers. At the La Vita Bella assisted 

living facility residents 

spent hours in waistdeep water waiting for 

help.”34

The findings cited failures in Florida that led to 

the death of 12 residents of the Rehabilitation 

Center at Hollywood Hills “[resulting] from 

inadequate regulation and oversight, ineffective 

planning and communications protocols, and 

questionable decision-making by facility 

administrators.”35 The report states that “the 12 

deaths at Hollywood Hills were ruled homicides by 

the Broward County Medical Examiner.”36 many of 

the deaths were preventable and were a direct 

result of criminal negligence.

Even the process of being transported to an 

institution may lead to death. This risk was 

illustrated in Horry County, South Carolina 

following Hurricane Florence. Two women, Wendy 

Newton and Nicolette Green, drowned in the back 

of a sheriff’s van while being transported to a 

psychiatric institution 

after having been civilly 

committed. Under court 

order, the women were 

involuntarily transported 

from a safe place 

through an area where 

there was known to be significant flooding. The 

deputies transporting the women were rescued 

when they were found unharmed on the roof of 

the sheriff's transport vehicle; the women, 

however, remained trapped inside.37 After an 

investigation, both deputies were fired.38 This 

incident raised questions about law enforcement 

engaging in transport of 

people with medical 

needs. 39 As of 

publication, the incident 

remains under investigation.

Economic consequences of 

institutionalization 

Anecdotal evidence shows that people with

mobility disabilities, autism, intellectual disabilities, 

actual or perceived psychiatric disabilities, 

dementia, brain injury, and COPD and respiratory 

disabilities have been unnecessarily 

institutionalized during disasters in a variety of 

facilities.

The types of institutions that people with 

A photo taken of residents of the Bella 

Vita assisted living facility in Dickinson, 

Texas, waist deep in flood water 

following Hurricane Harvey, garnered 

widespread attention.

Even the process of being transported 

to an institution may lead to death.
National Council on Disability 35

disabilities are most commonly admitted to during 

and after disasters are nursing homes, sometimes 

euphemized as rehabilitation centers. People are 

also involuntarily committed or threatened with 

involuntary commitment to psychiatric institutions 

during and after disasters. Stakeholder 

teleconferences, disaster hotline calls, and general 

media coverage revealed that some people were 

threatened with commitment under what is known 

as the Baker Act (Florida Statute 394.451-

394.47891), Florida’s involuntary commitment 

statute. People experiencing homelessness 

immediately prior to Hurricane Harvey were 

threatened with civil commitment if they did not 

report to a shelter. For 

reasons delineated 

below, people choose 

to shelter in place for 

valid reasons, including 

inability to manage themselves in crowded 

conditions and noise, and mistrust of government. 

As noted above, a disaster hotline caller from 

Texas was readmitted to a psychiatric institution 

because she was not able to fill the prescription 

she had been given after the disaster. In a postIrma Florida listening session, another woman 

reported being threatened with civil commitment 

when she was refused admission to a nursing 

home because of the psychiatric medication that 

she took. In this situation, advocates intervened, 

and she was not committed.

Working people with disabilities who are 

institutionalized during and after disasters become 

unemployed. Should they seek another job upon 

discharge from the institution, they may have a 

difficult time securing employment because of 

stigma and because their community is coping 

with the economic effects of a recent disaster.

Even those who are not employed play valued 

social roles in the community and their absence, 

through institutionalization, will impact community 

resilience and result in economic loss to the 

person, their family, and their community. 

Institutionalization of people with disabilities who 

are caregivers could result in the institutionalization 

of their aging parents or spouses and other family 

members with disabilities for whom they care. The 

institutionalization of people who care for children 

or grandchildren results 

in a childcare crisis for 

an already traumatized 

family. Such a situation 

could result in job loss 

for the non-institutionalized parent or the 

placement of children in foster care, all resulting in 

economic loss.

One senior executive at a major oil company in 

Texas who is the parent of a child with autism 

attributed her inability to resume work after 

Hurricane Harvey to the lack of child care and 

transportation from their temporary housing 

location to her child’s school, which was now 

several hours away. The relocation of the family’s 

in-home support providers resulted in the loss of 

that essential service. The school district offered 

residential care so the mother could resume 

employment, an illustration of multilayered 

economic ramifications.

Working people with disabilities who are 

institutionalized during and after 

disasters become unemployed.
36 National Council on Disability

Disaster-impacted students with disabilities 

have legal protections under the Individuals with 

Disabilities Education Act (IDEA) of 1975, the ADA, 

and the Rehabilitation Act. Having such services 

and supports in place when students with 

disabilities return to school would help to ensure 

equal access to their education and allow their 

parents and guardians to return to work. 

Immediate action to return students with 

disabilities to school with their peers also will 

minimize the risk of institutionalization.

Communities cannot be resilient in 

disastersunless all its members are resilient.

Institutionalization of people with disabilities 

weakens overall community resilience and 

negatively impacts local economies.

Recommendation: NCD recommends that 

the U.S. Department of Education (ED) issue a 

policy directive to require school systems to 

include an individualized emergency plan for 

uninterrupted delivery in every student’s IEP 

or 504 plan to comply with the Free and 

Appropriate Public Education requirement in 

IDEA and in the Rehabilitation Act. 

Recommendation: NCD recommends that 

ED takes immediate action to ensure that 

disaster-impacted students with disabilities 

are not excluded from returning to school with 

their peers and that all supports and services 

included on their IEP or Section 504 plan are 

provided without interruption. This includes 

providing services during school closure and 

upon school reopening in order to meet their 

individualized educational needs and to 

prevent institutionalization.
National Council on Disability 37

Chapter 3: Why people with disabilities end up 

institutionalized during and after disasters

Factors that lead to 

institutionalization during and after 

disasters 

he failure to provide equal access to 

disaster-related services, resulting in 

institutionalization, is not limited to a 

specific point in disaster response and recovery, 

nor is institutionalization limited to a specific 

disability group or groups. Virtually all the factors 

that lead to institutionalization can be anticipated 

and institutionalization prevented. 

The chart that follows demonstrates the 

factors that individually or collectively drive 

institutional admissions beginning at evacuation, 

and throughout disaster response and recovery.

Some factors occur during one phase of the 

disaster cycle; others occur across multiple 

phases. A more thorough examination of several 

of these factors follows at the end of Chapter 3. 

Factor Preparedness Response Recovery

Entrenched medical model of disability and 

disability bias

X X X

Failure to plan, poor planning, and nonexecution or faulty execution of plansX X

Lack of understanding of the legal 

obligation to provide equal access to 

programs and services when using 

acquired federal funds. Examples include 

accessible notifications, warnings, 

transportation, housing, etc.

X X X

Lack of understanding that assisted living 

facilities are institutions that, because they 

are less regulated, pose their own risks

X X X

Notifications and warnings that are not 

accessible to people with disabilities 

X

Lack of communication between 

evacuation and shelter personnel

X

T
38 National Council on Disability

Factor Preparedness Response Recovery

Limited ability to bring the person’s needed 

assistive devices, technology, and 

accommodations

X

Difficulty of applying for FEMA services or 

receiving reasonable accommodations

X X

Lack of backup power in shelters X X

Confusion among government entities 

about the use of hospital and nursing home 

placement in disasters

X X X

Unrealistic expectations about caregivers, 

personal assistance providers, etc.

X X X

Separation of people with disabilities from 

their natural supports

X X

Loss of durable medical equipment, 

consumable medical equipment, and 

assistive technology

X X

Deterioration of health because of, for 

example, lack of conditions conducive to 

health maintenance 

X X

Disagreements among first responders, 

shelter operators, medical professionals, 

local/state/federal personnel

X X X

Movement of people with disabilities to 

multiple sheltering locations

X

Sending people with disabilities to 

locations, such as hotels, that are not 

prepared to interact with disaster-impacted 

people

X X

Messaging that may portray lack of 

disability supports and services throughout 

evacuation and sheltering

X X

Failure to embrace “dignity of risk” and 

self-determination

X X X
National Council on Disability 39

Factor Preparedness Response Recovery

Lack of Medicaid portability between home 

and host states and territories

X X

Although there are numerous factors that lead 

to institutionalization during and after disasters, all 

are rooted in the medical model of disability; poor 

planning; and lack of understanding of civil rights 

laws that protect people with disabilities during 

and after disasters.

Medical model of disability

Scholars have written about the medical 

model of disability since the 1960s. People who 

have adopted the medical model of disability make 

assumptions that people with disabilities are sick 

and that optimal services for people with 

disabilities are provided by medical professionals. 

Adherents to this model hold a paternalistic 

perspective that people with disabilities need 

protection. They also believe, consciously or 

subconsciously, that it is the job of people without 

disabilities to keep people with disabilities safe, 

often in a medical environment. Many responders 

and people in the field of public health adhere to at 

least some of the components of the medical 

model of disability.

Ineffective, poorly executed, and non-existent 

planning

Poor planning was another consistent factor 

that contributed to lack of equal access in disasterrelated programs and services, ineffective, poorly 

executed, and non-existent planning was evident 

throughout all stages of all the disasters. Examples 

include: 

 Red Cross did not conduct access surveys of 

shelters prior to disasters, resulting in people 

with mobility disabilities lacking accessible 

toilets for long periods in many areas and 

without accessible showers for months in the 

U.S. Virgin Islands.

 Shelter staff did not have a mechanism to 

provide information about people with 

disabilities who were discharged, removed, 

or relocated from shelters and were admitted 

to nursing homes.

 CMS did not have a process for collecting 

information and data regarding whether a 

person was admitted to a nursing home 

during a disaster and whether that person 

was subsequently returned to a more 

integrated setting.

 Poorly resourced and trained local and county 

emergency managers were responsible for 

decisions involving referrals of disasterimpacted people with disabilities to 

institutions and subsequently securing 

permanent housing in the most integrated 

setting appropriate to their needs.
40 National Council on Disability

Lack of compliance with and understanding of 

disability rights law

Emergency responders, managers, and even 

some members of the disability community 

consistently 

demonstrated a lack of 

understanding that 

federally-funded 

disaster-related 

programs and services 

must be accessible 

under the Rehabilitation 

Act and that these rights cannot be waived. They 

also lacked an appreciation for the rights that 

people with disabilities have under the ADA to 

equal access to disaster-related programs and 

services and to receive services in the most 

integrated setting appropriate to their needs. It 

appeared that many saw the practice of 

institutionalization and the denial of equal access 

to disaster-related programs and services that 

could lead to institutionalization as acceptable 

occurrences. Many 

either did not 

appreciate or did not 

articulate that these 

practices are unlawful. 

It also appeared that 

many did not 

appreciate how closely 

the lack of equal access to disaster-related 

programs and services was linked to 

institutionalization. And, even among highly 

knowledgeable community leaders, the option of 

institutionalization seemed an acceptable solution 

considering the circumstances, eschewing

[E]ven among highly knowledgeable 

community leaders, the option of 

institutionalization seemed an acceptable 

solution considering the circumstances, 

eschewing planning as an issue to be 

dealt with after the disaster.
National Council on Disability 41

planning as an issue to be dealt with after the 

disaster.

At times, responders showed a lack of urgency to 

avoid institutionalizing people with disabilities during 

and after disasters. One emergency manager 

maintained that if a personal assistant could not be 

found for a disaster survivor with a disability, 

institutionalization would be required. Although the 

emergency manager stated that this course would be 

followed only in a worst-case scenario (and 

stakeholders from the disability community stated, in 

response, that they sincerely hoped that 

institutionalization would not happen), no one brought 

up that such an eventuality might be unlawful.

Recommendation: NCD recommends federal entities require that all recipients and 

subrecipients of federal funds receive training in the scope of their obligations to people with 

disabilities. This training must include information advising that federal funds may be revoked 

due to noncompliance with the obligation to receive services in the most integrated setting 

appropriate and that this obligation applies during disasters. 

Recommendation: NCD recommends federal entities monitor recipients and subrecipients of 

federal funds to ensure compliance throughout all disaster related placement decisions by 

recipients and subrecipients of federal financial funds.

Recommendation: NCD recommends that federal agencies with any responsibility for 

emergency preparedness, community resilience, and disaster-related services, programs, 

supports, or activities must engage with national, state, and local coalitions of disability-led 

organizations and stakeholders. These federal agencies include but are not limited to: DHS 

FEMA, Office for Civil Rights and Civil Liberties, HHS, ASPR, ACL, Administration for Children 

and Families, Independent Living Administration, CDC, HUD, Department of Transportation, 

DOJ, Disability Rights Section, ED, Office of Special Education and Rehabilitative Services, 

Department of Labor, Office of Disability Employment Policy, Department of Defense, Veterans 

Affairs, and U.S. Access Board.

Recommendation: NCD recommends that each agency publish an annual report documenting 

its engagement on its website.

In order to prevent unnecessary 

institutionalization, federal guidance must be 

consistent with the ADA and other applicable civil 

rights laws, as well as consistent between 

agencies. Additionally, implementation must be 

geared towards preserving the safety of people 

with disabilities in ways that also preserve their 

civil rights.
42 National Council on Disability

Conflicting guidance from federal 

agencies 

State/territory and local governments are 

rightly confused about their obligations to provide 

services to disaster survivors with disabilities in 

the most integrated setting appropriate to the 

survivor. This confusion stems from the lack of 

alignment of guidance documents with the 

Olmstead ADA integration mandate as it applies to 

people with disabilities impacted by disasters.40

In 2007, DOJ instructed state and local 

governments in their ADA Best Practices Tool Kit 

for State and Local Governments, Chapter 7 that

“The ADA requires people with disabilities to be 

accommodated in the most integrated setting 

appropriate to their needs, and the disabilityrelated needs of people who are not medically 

fragile can typically be met in a mass care 

shelter.41 For this reason, people with disabilities 

should generally be housed with their families, 

friends, and neighbors in mass care shelters and 

not be diverted to special needs or medical 

shelters.” 

“The ADA requires emergency managers and 

shelter operators to accommodate people with 

disabilities in the most integrated setting 

appropriate to their needs, which is typically a 

mass care shelter Local governments and shelter 

operators may not make eligibility for mass care 

shelters dependent on a person’s ability to bring 

his or her own personal care attendant.”42 This is 

consistent with the integration mandate in the

Olmstead Supreme Court decision. 

Unfortunately, however, numerous other

guidance documents from other federal agencies 

are in conflict with this DOJ language. Excerpts 

from these conflicting current federal guidance 

documents are included in the pages that follow. 

Department of Justice (DOJ)

“Shelters are usually divided into two 

categories: (1) ’mass care ‘shelters, which serve 

the general population, and (2) ’special needs ‘or

’medical ‘shelters, which provide a heightened 

level of medical care for people who are medically 

fragile. Special needs and medical shelters are 

intended to house people who require the type 

and level of medical care that would ordinarily be 

provided by trained medical personnel in a nursing 

home or hospital.”43

Department of Homeland Security (DHS)

Office for Civil Rights and Civil Liberties 

(CRCL) 

“Under federal civil rights laws, sheltering 

services and facilities must be accessible to children 

and adults with disabilities. Sheltering and temporary 

housing of persons with disabilities must take place 

in the most integrated setting appropriate to the 

needs of the person, which in most cases is the 

same setting people without disabilities enjoy. The 

intent of this federal guidance is to ensure that 

people are provided appropriate accommodations 

and are not turned away or moved from general 

population shelters and temporary housing or 

inappropriately placed in other, more restrictive,

environments (e.g., ’special needs‘ shelters, 

institutions, nursing homes, and hotels and motels 

disconnected from other support services).”44

Federal Emergency Management Agency 

(FEMA)

Segregating children and adults with and 

without disabilities who have access or functional 

needs from general population shelters to “special 
National Council on Disability 43

needs” shelters is ineffective in achieving 

equitable program access. Additionally, if a special 

needs shelter is the only choice given to a person 

with a disability, it violates federal law.45 People 

with disabilities are entitled by law to equal 

opportunity to participate in programs, services, 

and activities in the most integrated setting 

appropriate to the needs 

of the person. 

Additionally, children and 

adults with and without 

disabilities who have 

access and functional needs should not be 

sheltered separately from their families, friends, 

and/or caregivers because services they require 

are not available to them 

in general population 

shelters.46

“[P]roviders must be 

aware that they may fall 

into more than one 

category of provider. For 

example, a state agency that receives federal 

financial assistance must comply with laws and 

regulations that apply to federal financial 

assistance recipients as well as to laws that apply 

to state and local governments. Non-profit 

organizations that receive federal financial 

assistance to provide food, clothing, shelter, or 

transportation in connection with an emergency 

must comply with obligations applicable to 

recipients of such assistance as well as 

requirements generally applicable to nonprofit 

organizations that provide services to the public.”47

Department of Health and Human 

Services (HHS)

Office for Civil Rights (OCR)

“Being mindful of all segments of the 

community and taking reasonable steps to provide 

an equal opportunity to benefit from emergency 

response efforts will help ensure that responsible 

officials are in 

compliance with Federal 

civil rights laws and that 

the disaster 

management in the 

affected areas by Hurricane Florence is 

successful.”48

Although this guidance contains “equal 

opportunity to benefit” 

language from the ADA, 

it neither provides 

instruction as to how to 

provide equal 

opportunity nor reflects 

any of the Olmstead

integration mandate. 

Office of the Assistant Secretary for 

Preparedness and Response (ASPR)

The Office of the Assistant Secretary for 

Preparedness and Response published “Working 

with Older Adults and People with Disabilities: Tips 

for Treatment and Discharge Planning” during the 

2017 disaster response reminding responders and 

healthcare providers not to institutionalize disasterimpacted people with disabilities who did not 

reside in institutional settings before the disaster, 

however it instructs that when an individual is 

[I]f a special needs shelter is the only 

choice given to a person with a 

disability, it violates federal law.

[I]t instructs that when an individual is 

institutionalized in a disaster, the goal 

is to return them to the least restrictive 

environment, without referring to the 

legal obligation ...
44 National Council on Disability

institutionalized in a disaster, the goal is to return 

them to the least restrictive environment, without 

referring to the legal obligation to meet the needs 

of disaster-impacted individuals in the most 

integrated setting appropriate to the needs of the 

individual.49

Centers for Disease Control and 

Prevention (CDC)

“Somewhere between a temporary shelter 

and temporary hospital, a Federal Medical Station 

is a non-emergency medical center set up during a 

natural disaster to care for displaced persons with 

special health needs—including those with chronic 

health conditions, limited mobility, or common 

mental health issues—that cannot be met in a 

shelter for the general population during an 

incident.”50 

This guidance runs contrary to the Olmstead 

integration mandate and to the guidance from the 

Federal Government agencies above. It would 

allow referral of people with disabilities to a 

Federal Medical Station if they have “special 

health needs that include chronic health 

conditions, limited mobility, or common mental 

health issues.”

People with disabilities often take the 

following actions as a consequence of conflicting 

guidance: 

 Choose to remain in harm’s way, even in a 

mandatory evacuation, rather than 

evacuate to ‘special medical needs’ 

shelters, hospitals, and nursing homes

that are unable to provide the disability 

assistance they require.

 Evacuate then are denied access to 

general population community shelters 

and are transferred (often against their 

will) to ‘special medical needs shelters’ or 

directly to hospitals and nursing homes 

even though they do not require 

hospitalization or nursing home care.

 Are denied access to community 

sheltering and are often admitted to 

hospitals and nursing homes without 

discharge plans, and sometimes remain 

institutionalized in these facilities long 

after the disaster has ended.

 Encounter inadequate emergency plans 

for sheltering in place and evacuation at 

“special medical needs” shelters. For 

example, a "special medical needs" shelter 

planned to evacuate sheltered people with 

disabilities and bariatric needs housed on 

the 3rd floor by using "bed sleds.”

 Are forced to pay for their evacuation and 

sheltering (whether in a hotel or in a hospital) 

even though others who stay in the 

community shelters benefit from 

government-funded transportation and 

sheltering at no personal cost. Evacuated 

veterans with disabilities were billed for their 

hospitalizations in one example of this 

disparity.

The failure to provide equal access to community 

shelters harms not only people with disabilities, but 

also communities with limited acute care beds; first 

responders; and skilled medical professionals when 

they are needed most.
National Council on Disability 45

Centers for Medicare and Medicaid (CMS) 

During Hurricanes Harvey, Irma, Maria, 

Florence and Michael and the California wildfires 

of 2018, HHS issued waivers through CMS that, 

among other things, allowed for:

 Movement of disaster-impacted people to 

skilled nursing facilities (SNFs) from hospitals 

to “make room for more seriously ill patients”

 Placement of disaster-impacted people with 

disabilities in a SNF “as a result of the 

emergency”

“Section 1812(f) of the Social Security Act (the 

Act) authorizes the Secretary to grant SNF 

coverage in the absence of a qualifying hospital 

stay, as long as this action does not increase total 

program payments and does not alter the SNF 

benefit’s “acute care nature” (that is, its 

orientation toward 

relatively short-term and 

intensive care).

“Under this authority, 

CMS can issue a temporary waiver of the SNF 

benefits qualifying hospital stay requirement for 

those beneficiaries who are evacuated or transferred 

as a result of the emergency situation. In this way, 

beneficiaries who may have been discharged from a 

hospital early to make room for more seriously ill 

patients will be eligible for Medicare Part A SNF 

benefits. In addition, beneficiaries who had not been 

in a hospital or SNF prior to being evacuated, but 

who need SNF care as a result of the emergency, 

will be eligible for Medicare Part A SNF coverage 

without having to meet the 3-day qualifying hospital 

stay requirement.”51

These waivers conflict with the integration 

mandate in the U.S. Supreme Court Olmstead 

decision and federal guidance from DOJ, DHS and 

FEMA on serving people with disabilities in the 

most integrated setting appropriate to the person, 

including in a disaster. There are no waivers to civil 

rights in disasters or disaster loopholes.

These CMS waivers are also not consistent 

with statements made by the HHS Office for Civil 

Rights, as seen in their September 13, 2018 press 

release and the technical assistance HHS provides. 

“Being mindful of all segments of the community 

and taking reasonable steps to provide an equal 

opportunity to benefit from emergency response 

efforts will help ensure that responsible officials 

are in compliance with Federal civil rights laws and 

that the disaster management in the areas 

affected by Hurricane 

Florence is successful.”52

The CMS waivers 

cited above conflict with 

the placement of people with disabilities in the 

most integrated setting appropriate to their needs. 

It is important to point out though that not all CMS 

waivers are detrimental to compliance with most 

integrated setting obligations to provide services in 

the most integrated setting appropriate to the 

needs of the person. In fact, these waivers can 

assist in the prevention of institutionalization of 

disaster-impacted people with disabilities. For 

example, CMS states that “when durable medical 

equipment, prosthetics, orthotics, and supplies 

(DMEPOS) are lost, destroyed, irreparably 

damaged, or otherwise rendered unusable due to 

There are no waivers to civil rights in 

disasters or disaster loopholes.
46 National Council on Disability

circumstances relating to a declared emergency, 

Medicare will pay for the replacement DMEPOS 

that a Medicare beneficiary owns or purchased.

Examples include home oxygen equipment, 

continuous positive airway pressure (CPAP) 

devices and supplies, hospital beds, diabetes 

testing supplies, wheelchairs, canes, walkers, 

artificial limbs, braces, and enteral nutrients and 

supplies. CMS can exercise allowable flexibilities 

and issue waivers (when authorized) as necessary 

to accommodate the needs of those impacted by 

an emergency or disaster.”53

It is indisputable that people with disabilities 

are placed in institutions during and after disasters 

and that certain conflicting federal policies allow 

this scenario, as 

evidenced by recent CMS 

technical assistance 

documents and practices 

that waive civil rights 

protections by expediting 

nursing home 

admissions. This practice occurs despite guidance 

from DOJ requiring state and local governments to 

provide assistance to people with disabilities in the 

most integrated setting appropriate to the needs 

of that person. These protections include the 

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.”54

Using blanket waivers in disasters to place 

people with disabilities in nursing homes is a 

violation of the Federal Government’s own 

directives on civil rights compliance. Yet, this 

practice is common and continues, disregarding 

the civil rights of people with disabilities. 

Implementation shortfalls of 

emergency support functions 

Another failure that leads to institutionalization 

is the approach taken by the Federal Government 

to assist the states in disaster response. When a 

state exceeds its capacity to meet the emergency 

needs of its residents or if it anticipates a lack of 

capacity, the governor will declare a disaster and 

request assistance from the President. If granted, 

the Federal Government will initiate several 

emergency support functions (ESFs) under which 

to provide assistance. One of the ESFs with a very 

significant effect on the needs of disasterimpacted people with 

disabilities is ESF #8. ESF 

#8 “provides the 

mechanism for federal 

assistance to supplement 

local, state, tribal, 

territorial, and insular area 

resources in response to 

a disaster, emergency, or incident that may lead to 

a public health, medical, behavioral, or human 

service emergency, including those that have 

international implications.” It “provides planning 

and coordination of federal public health, 

healthcare delivery, and emergency response 

systems to minimize and/or prevent health 

emergencies from occurring; detect and 

characterize health incidents; provide medical care 

and human services to those affected; reduce the 

public health and human service effects on the 

community; and enhance community resilience to 

respond to a disaster.” ESF #8 addresses “public 

Using blanket waivers in disasters to 

place people with disabilities in 

nursing homes is a violation of the 

Federal Government’s own directives 

on civil rights compliance.
National Council on Disability 47

health and medical services (e.g., patient 

movement, patient care, and behavioral 

healthcare) and [delivery of] support to human 

services (e.g., addressing people with disabilities 

and others with access and functional needs)

through surge capabilities that augment public 

health, medical, behavioral, and veterinary 

functions with health professionals and 

pharmaceuticals. These services include 

distribution and delivery of medical 

countermeasures, equipment and supplies, and 

technical assistance. This ESF may continue 

providing services and ensure a smooth transition 

to recovery while the community rebuilds its 

capability and assumes administrative and 

operational responsibility for services.” ESF #8 

provides supplemental assistance to local, state, 

tribal, territorial, and insular area governments. 

This assistance includes the role of ESF #8 and 

ASPR in some of their core functional areas, which 

include:

 Assessment of public health/medical needs

 Health surveillance

 Medical surge

 Health/medical/veterinary equipment and 

supplies

 Patient movement

 Patient care

 All-hazards public health and medical 

consultation, technical assistance, and 

support 

 Behavioral healthcare

 Public health and medical information55

Limitations and shortfalls in the 

implementation of ESF #8 by ASPR have limited 

the removal of barriers to equal access to health 

maintenance in the most integrated setting 

appropriate. These barriers may result in 

institutionalization of disaster-impacted people 

with disabilities.

Barriers to equal opportunity to receive health 

care and ESF #8 services from HHS were among the 

most devastating gaps repeatedly reported by 

stakeholders, key informants, and disaster hotline 

callers. These gaps were also consistently reported 

in traditional and social media.

For example, one recurrent problem that was 

never resolved was the provision of oxygen to 

disaster survivors in Puerto Rico who were not in 

acute medical settings. Reportedly, over 50,000 

people living in the community across Puerto Rico 

use oxygen for maintaining their health and 

independence. Oxygen was previously manufactured 

and supplied on the island and provided to residents. 

When the manufacturing capability was indefinitely 

disrupted, there was no plan for providing an 

alternative source. This critical life-saving and lifesustaining medical need seemed to fall squarely 

within the responsibility of ESF #8. However, 

because the focus of ASPR’s efforts were on 

establishing hospital and medical facility operation, 

there was no effort to meet the health maintenance 

needs of thousands of disaster survivors who 

depend on receiving oxygen outside of medical 

facilities.

When the U.S. Naval Ship Comfort arrived, it 
48 National Council on Disability

was assumed that its oxygen manufacturing 

capability would be used to meet these needs. 

Instead, it quickly became apparent that the hospital 

ship was only providing oxygen for facility-based 

care, further eliminating any immediate resources for 

non-institutional provision to disaster survivors with 

disabilities. The outcome for the people left on the 

island without access to oxygen is unknown. 

Another gap in ESF #8 was the incomplete 

process of serving the dialysis and related needs of 

disaster-impacted people from the U.S. Virgin 

Islands. Approximately 200 people requiring dialysis 

and their companions were evacuated from the U.S. 

Virgin Islands to San Juan, Puerto Rico, during 

Hurricane Irma. These people were then evacuated 

to Atlanta, Georgia, in anticipation of Hurricane 

Maria’s landfall on Puerto Rico. These people were 

provided with hotel rooms and dialysis services, but 

it became apparent that their other needs and the 

needs of their companions had not been considered. 

Intervention from government and non-government 

resources were required to address basic needs 

such as food, transportation for non-dialysis needs 

(such as trips to the grocery store), and disabilityrelated medical equipment and supplies. For many of 

these people, the gaps in service delivery and lack of 

coordination resulted in health deterioration, 

shortfalls in meeting needs, and overreliance on 

hospitalization. Over one year later, many of these 

people are still in Atlanta, and their future remains in 

limbo. This lack of cohesiveness is just one of the 

factors that lead to institutionalization as an eventual

‘solution.

When representatives from Paralyzed Veterans 

of America (PVA) traveled to assess the needs of 

their members in Puerto Rico days following 

Hurricane Maria, they reported that a significant gap 

in coordination between services from the Veterans 

Administration and other disaster related health care 

providers duplicating some services and denying 

others. PVA reports that this gap appears to exist 

routinely throughout disaster response. 

Recommendation: NCD recommends that 

FEMA lead a review of the National Response 

Framework, Emergency Support Function 

Annexes and Federal Interagency Operations 

Plans and all other applicable federal doctrine 

to determine any required updates to 

specifically address responsibility for meeting 

the equal access, health maintenance, safety, 

and independence needs of children and 

adults with disabilities to prevent 

institutionalization.

While the responsibility for ESF #8 falls to 

HHS, the overall leadership for the coordination of 

all of the Emergency Support Functions is held by 

FEMA through their Emergency Support Function 

Leadership Group (ESFLG) “The Federal ESFs 

bring together the capabilities of Federal 

departments and agencies and other national-level 

assets. ESFs are not based on the capabilities of a 

single department or agency, and the functions for 

which they are responsible cannot be 

accomplished by any single department or agency. 

Instead, Federal ESFs are groups of organizations 

that work together to deliver core capabilities and

support an effective response. The ESFLG 

comprises the Federal departments and agencies 

that are designated as coordinators for ESFs or 

coordinating agencies for other NRF annexes. 
National Council on Disability 49

FEMA leads the ESFLG and is responsible for 

calling meetings and other administrative 

functions.”56

Recommendation: NCD recommends that 

FEMAs ESFLG establish a seamless and 

integrated process in Emergency Support 

Functions #6 and #8 to prioritize health 

maintenance for children and adults with 

disabilities and seamlessly deliver services and 

supports to people in the most integrated 

setting throughout evacuation, temporary 

housing, and disaster recovery.

Disability stakeholder organizations meet daily 

during disaster response 

and weekly after the 

immediate response 

period has passed. 

Personnel from FEMA, 

ASPR, CLA, the DHS 

Office for Civil Rights and 

Civil Liberties, and other 

key federal agencies are 

invited to each of these 

meetings, but only representatives from DHS 

Office for Civil Rights and Civil Liberties routinely 

attend. Lack of engagement and participation from 

agencies limits coordinated efforts to address and 

resolve the immediate needs of disaster-impacted 

people with disabilities, disability organizations, 

and other disaster service providers. During the 

Hurricane Florence response, ASPR leadership told 

Congressman Bennie Thompson’s staff that they 

would assign a representative to engage with 

disability organizations, but never responded to 

further outreach efforts. 

Recommendation: NCD recommends that 

the Veterans Administration and HHS 

collaborate to ensure disaster-related services 

for veterans are integrated with all other 

emergency and disaster services to address 

the current gap in coordination between 

services for veterans with disabilities and 

services for other people with disabilities.

The Post-Katrina Emergency Management 

Reform Act (PKEMRA) (Pub. L. 109-295 required 

FEMA to consult with 

NCD and other 

organizations to appoint a 

Disability Coordinator, 

who is to ensure that the 

needs of individuals with 

disabilities are being 

properly addressed in 

emergency preparedness 

and disaster relief. 

Additionally, FEMA’s duties include: interacting 

with NCD and other stakeholders regarding the 

needs of individuals with disabilities in emergency 

planning requirements and relief efforts in case of 

disaster; revising and updating guidelines for 

government disaster emergency preparedness; 

carrying out a national training program to 

implement the national preparedness goal; 

assessing the nation’s prevention capabilities; 

Lack of engagement and 

participation from agencies limits 

coordinated efforts to address and 

resolve the immediate needs of 

disaster-impacted people with 

disabilities, disability organizations, 

and other disaster service providers.
50 National Council on Disability

identifying and sharing best practices; developing, 

coordinating and maintaining a National Disaster 

Housing Strategy; developing accessibility 

guidelines for communications and programs in 

shelters and recovery centers; and helping all 

levels of government in the identification of shelter 

locations and capabilities when a recipient uses 

preparedness grant assistance when developing 

and maintaining evacuation plans.

Recommendation: NCD recommends that 

Congress amend the Stafford Act to require 

HHS to have active engagement with disability 

organizations with specific expertise and 

involvement in national disability inclusive 

emergency management policy and practice. 

The provision should be similar to those in 

PKEMRA requiring community engagement by 

FEMA. 

Further examination of factors that lead to 

institutionalization disconnects and bureaucratic 

quagmires occur repeatedly throughout the 

disaster cycle and have an impact on people with 

disabilities that may 

contribute to 

institutionalization. 

Conditions before, during 

and following a disaster 

can lead to unnecessary 

institutionalization that may persist long after 

people without disabilities have been able to return 

to their day-to-day lives.

Poverty and low income 

Poverty is at the heart of pre-disaster 

circumstances that may trigger a cascade of 

events leading to institutionalization of disasterimpacted people. The fewer resources people and 

families have, the less likely they are to be able to 

mitigate factors leading to institutionalization. 

Losing one's home or experiencing homelessness 

puts people with disabilities at greater risk of 

unnecessary institutionalization. 

For example, it was reported on stakeholder 

calls that landlords in Panama City, Florida after 

Hurricane Michael were attempting to force 

large numbers of people to leave low-income 

habitable apartments with only 74-hours’ notice. 

Although legal remedies were sought, some 

people left because landlords threatened to 

withhold security deposits if tenants did not 

comply with eviction. It has been speculated 

that landlords were evicting low-income tenants 

so that they could refurbish units with insurance 

or disaster recovery funds and raise rents 

substantially.

People who live in poverty are more likely to 

live in substandard housing, which is more 

vulnerable in a disaster because of location and 

quality of building materials. In addition, people 

who live in poverty are 

disproportionately 

impacted by evacuation 

orders. Even when their 

property is not damaged 

or destroyed, they may

face eviction because they cannot pay rent upon 

returning home because all their funds were 

expended on evacuation-related expenses. 

Then, having been evicted, they lose their 

security deposit and credit, both of which are 

critical to obtaining new housing. All these 

The fewer resources people and 

families have, the less likely they are 

to be able to mitigate factors leading 

to institutionalization.
National Council on Disability 51

conditions may lead to institutionalization.

Recommendation: NCD recommends that 

Congress authorize and appropriate funds for 

DHS and FEMA to provide disaster 

preparedness grants specifically targeted to 

organizations led by and serving marginalized 

communities, including but not limited to 

people with disabilities experiencing poverty; 

people with disabilities experiencing 

homelessness; women with disabilities; 

people of color with disabilities; and members 

of the LGBTQ community with disabilities.

Although people with disabilities are among 

those with the highest rates of poverty, it is critical 

to note that they are often members of other 

marginalized groups, including people of color, 

LGBTQ, and women, thus increasing the likelihood 

that they live in poverty. For a variety of reasons, 

this intersectionality may result in higher rates of 

institutionalization.

Inaccessible alerts, 

warnings, and 

notifications 

People with disabilities 

are frequently criticized, 

blamed and shamed when 

they do not evacuate during 

a mandatory evacuation. This refusal or inability to 

evacuate is sometimes a response to a lack of 

disaster-related programs and services and other 

public policy failures. People may choose to 

shelter in place because they lack actionable 

information about when to evacuate, how to 

evacuate, and where to go. For instance, 

notifications and warnings are frequently not 

accessible to people who are Deaf even if 

captioning or interpreters are provided., because 

often captions and interpreting is blocked from 

being seen on screen. 

Alerts direct people with disabilities to 

shelter in place or direct them to environments 

that may be too loud, lack privacy or lack an 

accessible bathroom. Messages may instruct 

people with disabilities who need personal 

assistance that they must bring a personal 

assistant with them. However, they may not be 

able to afford an assistant at that time or may 

not have a personal assistant available for an 

unspecified amount of time. Conversely, people 

with disabilities referred to most “special 

needs” shelters are often only allowed to have 

one family member 

stay with them. This 

requires parents with 

disabilities who have 

more than one child to 

separate from them,

risking loss of custody 

to child protective 

services. In addition, people with disabilities 

may harbor a distrust of government because of 

lack of access to and discrimination by 

government programs and services in the past.

[N]otifications and warnings are 

frequently not accessible to people 

who are Deaf even if captioning or 

interpreters are provided, because 

often captions and interpreting is 

blocked from being seen on screen.
52 National Council on Disability

Recommendation: NCD recommends that 

the Federal Communications Commission 

(FCC) reestablish their Emergency Access 

Advisory Committee to establish effective 

communication access requirements for 

alerts, warnings and notification, including 

provision of American Sign Language and 

other existing and new assistive technology. 

These guidelines should be developed in 

consultation and collaboration with DOJ, 

applying the requirements for equal effective 

communication access. Implementation 

should include monitoring and enforcement by 

the FCC and the Department of Justice.

Registries 

NCD cannot overstate how detrimental 

registries for people with disabilities are in 

disasters.57 Stakeholders across the spectrum of 

disability advocates and emergency managers still 

struggle to find ways to make registries a viable 

solution to identify, rescue and evacuate people 

with disabilities affected by disasters despite 

repeated failures of registries. Registries isolate 

and marginalize people 

with disabilities and create 

a false sense of 

expectation among people 

with disabilities and their 

family members. Like 

institutions, registries have 

been proven to be an ineffective method to ensure 

proper evacuation and sheltering of people with 

disabilities during emergencies.

People with disabilities have a right to equal 

access to emergency services. Registries have 

both impeded equal access solutions and 

established inadequate alternatives for using 

federal funds. NCD recommends that no federal 

funds, including but not limited to federal funds 

from the U.S. Department of Homeland Security 

and the U.S. Department of Health and Human 

Services, be used in development, deployment, 

and maintenance of emergency ‘special needs’ 

registries intended to include people with 

disabilities.

Evacuation 

In addition to lack of equal access to 

notification and notifications, many people with 

disabilities do not have equal access to the 

evacuation process itself. When evacuations are

required prior to shelter openings, people with 

disabilities are often forced to find accessible 

places to stay outside the evacuation zone. If 

accessible hotels are available, people with 

disabilities often do not have money to stay in 

them. In addition, accessible transportation out of 

the evacuation zone is often not available to 

people who require it or, when available, it is 

costlier than the standard 

transportation deployed for 

other evacuees.

Numerous disaster 

hotline callers reported that, 

after evacuation, they were 

homeless or facing 

homelessness because they used all their available 

funds on hotel stays and meals, a factor that could 

lead to institutionalization. In addition, disaster hotline 

callers reported that they chose to shelter in place 

Registries isolate and marginalize 

people with disabilities and create a 

false sense of expectation among 

people with disabilities and their 

family members.
National Council on Disability 53

because they were unable to reach 911, 211, or 311 

for clarification of evacuation instructions.

In summary, lack of clear and affordable 

evacuation instructions and options for people with 

disabilities are often directly connected to 

institutionalization.

Recommendation: NCD recommends that 

the Federal Mass Evacuation Plan, PKEMRA 

evacuation planning requirements, and any 

other plans that use federal funding for 

evacuation be reviewed by the Department of 

Justice, Department of Transportation, 

Department of Homeland Security, and other 

federal agencies with a role in planning, 

implementing and/or funding evacuation 

initiatives to ensure compliance with disability 

civil rights obligations throughout disaster 

response and implement all necessary 

corrective action immediately.

Respite 

Stakeholders reported that some people with 

disabilities do not get as far as sheltering before 

they are institutionalized. Among them are people 

who are institutionalized through the use of a 

respite placement during the disaster. Respite 

often becomes an eventuality when people with 

disabilities evacuate with family and friends to 

inaccessible locations. At the point of permanent 

placement, the family is often unable to find 

adequate accessible housing and the respite, 

which is a nursing home or other long-term care 

facility, becomes a permanent placement for the 

family member with a disability.

Recommendation: NCD recommends that 

HHS (CMS) in collaboration with all other 

federal entities with admission and monitoring 

or funding and reimbursement obligations 

maintains responsibility for ensuring that all 

admissions to hospitals and long-term care 

facilities during and after disasters are 

monitored and that the people placed are 

provided with the assistance needed to return 

to their community with all supports and 

services they need to regain and maintain their 

independence.

Disability bias and medicalization of 

disability 

Nearly every key informant who was 

interviewed brought up disability bias and 

medicalization of disability as factors that lead to 

disaster survivors with disabilities not having equal 

access to disaster-related programs and services 

and being referred to segregated shelters for 

people with disabilities and to institutions. 

The Red Cross describes one of the barriers to 

shelter transition as: “Medicalization of Disability—

The tendency to view people with disabilities as 

patients in need of medical intervention, even 

though they are living independently in the 

community prior to the disaster. This can result in 

placement of a person into a “special needs” 

shelter or skilled nursing facility which removes 

their right to make decisions for themselves, often 

with grave consequences." 58
54 National Council on Disability

Recommendation: NCD recommends that 

legislation be introduced to establish Training 

and Technical Assistance Disability and 

Disaster Centers that provide comprehensive 

training, technical assistance, development of 

funding sources, and support to state, tribal, 

and local disaster relief; public health entities; 

social service agencies; and stakeholder 

groups. The goal is to ensure that, in carrying 

out disaster management planning and 

programs, the agencies and groups address 

the mitigation of disability bias and 

inappropriate application of the medical model 

during and after disasters.

Key informants called for training for shelter 

managers, staff, and volunteers to have intensive 

training on mitigating conscious and unconscious 

disability bias and perceiving and interacting with 

disaster survivors with 

disabilities through the 

lens of the medical 

model. In addition, 

informants recommended 

that training be provided 

in concepts like the 

dignity of risk and self-determination. Key 

informants stated that a large part of the problem 

is that public health nurses and other professionals 

are trained that their number one priority must be 

to keep people with disabilities safe. Their

discipline correlates safety with placement in a 

medical environment, which in their view is safer 

for people with disabilities.

Placement Decisions 

Throughout evacuation, sheltering and 

transitioning from shelters and temporary 

housing, decisions about the placement of 

people with disabilities are almost always 

deferred to the local emergency manager. In 

most cases, local emergency management 

offices are significantly understaffed. During 

disasters, the array of their responsibilities is 

massive, and they are rarely knowledgeable 

about the rights of people with disabilities, the 

alternatives to institutionalization, or their own 

responsibilities regarding the obligation to place 

in the most integrated setting. They may not 

have any familiarity with disability resources in 

their community and may likely have been 

trained in approaches that perpetuate disability 

bias and medical model solutions. The middle of 

a disaster is far too late for education, and 

reliance on institutional 

solutions is far too easy.

The funding for local 

emergency management 

operations are typically 

generated by the Federal 

Government and 

subsequently funneled 

through state and county grants, contracts, and 

subcontracts. Under the Rehabilitation Act, 

acceptance of federal funding creates an 

obligation to ensure that placement of people 

with disabilities complies with civil rights 

obligations.

Key informants called for training for 

shelter managers, staff, and 

volunteers to have intensive training 

on mitigating conscious and 

unconscious disability bias ...
National Council on Disability 55

Recommendation: NCD recommends that 

the federal entity (typically FEMA and DHS) 

providing the funds ultimately received by local 

emergency management departments 

requires the participation of local staff in 

training on the scope of obligations under the 

Rehabilitation Act.

Recommendation: NCD recommends that 

DOJ monitor and enforce civil rights 

compliance throughout all disaster-related 

placement decisions made by recipients and 

subrecipients of federal financial assistance.

Sheltering

The period of evacuation and temporary 

sheltering before, during and following disasters 

brings circumstances that lead to the 

institutionalization of disaster survivors with 

disabilities. Disaster survivors with disabilities are 

often institutionalized after they enter an 

unprepared or poorly staffed general 

population/mass care/community shelter or 

following placement in ‘medical special needs’

shelters, ‘medical friendly’ shelters,’ ‘special needs 

shelters,’ and ‘Federal Medical Stations.’ 

Institutionalization also occurs when survivors 

seek assistance in acute care hospitals.

A HUD frequently-asked-question document 

delineates the differences between integrated and 

segregated environments. It states that “One of 

the basic tenets of Section 504 is that programs 

and services be conducted in the most integrated 

setting appropriate to the needs of the individual 

with a disability.

59 In terms of housing, this means 

that the housing provided to people with 

disabilities is not separate or unnecessarily 

segregated from housing provided to people 

without disabilities. Integrated settings also enable 

people with disabilities to live independently with 

disabilities and without restrictive rules that limit 

their activities or impede their ability to interact 

with people without disabilities. Examples of 

integrated settings can include scattered-site 

apartments providing permanent supportive 

housing, tenant-based rental assistance that 

enables people with disabilities to lease housing in 

integrated developments, and apartments for 

individuals with various disabilities scattered 

throughout public and multifamily housing 

developments.

“By contrast, segregated settings are 

occupied exclusively or primarily by people with 

disabilities. Segregated settings sometimes have 

qualities of an institutional nature, including, but 

not limited to, regimentation in daily activities, lack 

of privacy or autonomy, policies limiting visitors, 

limits on peoples’ ability to engage freely in 

community activities, and manage their own 

activities of daily living, or daytime activities 

primarily with other people with disabilities.”60

According to DOJ, the issue of “special 

needs“, ”special medical needs”, “medical

friendly”, was settled as far back as the Olmstead

decision and clearly described in the 2007 ADA 

Toolkit: “The ADA requires people with disabilities 

to be accommodated in the most integrated 

setting appropriate to their needs, and the 
56 National Council on Disability

disability-related needs of people who are not 

medically fragile can typically be met in a mass 

care shelter. For this reason, people with 

disabilities should generally be housed with their 

families, friends, and neighbors in mass care 

shelters and not be diverted to special needs or 

medical shelters”.

General population/community shelters

People with disabilities are sometimes 

institutionalized when they check into a general 

population shelter.

Recommendation: NCD recommends that 

DOJ and other federal entities with 

enforcement authority monitor and prohibit the 

automatic placement of individuals with 

disabilities in hospital and nursing home 

settings and direct state and local entities to 

immediately provide supports and services in 

the most integrated setting appropriate to any 

person who does not need this level of care.

Some of the factors that lead to institutionalization 

are medical model orientation and disability bias on 

the part of shelter staff and volunteers; lack of 

ability to track disaster survivors with disabilities 

after leaving shelters; lack of hotel room 

vacancies, especially for accessible hotel rooms in 

Transitional Sheltering Assistance (TSA)-approved 

hotels; and chronic lack of accessible and 

affordable housing in the community.

People with disabilities encountered numerous 

barriers in general population shelters that led to 

declining health and institutionalization. Barriers 

ranged from lack of accessible showers to policies 

that limited access. One general population shelter 

was made physically inaccessible by not allowing 

people with mobility disabilities access to an 

elevator, the only path to the restrooms, without 

what was described as a “chaperone” in the 

evening. There were seldom enough 

“chaperones” to escort people with mobility 

disabilities in the elevator to the restroom. This led 

to deteriorating health from incontinence and other 

effects of not being able to use a toilet.

All places of public accommodation, including 

shelters, are required to comply with Title III of the 

ADA. State and local government entities are 

required to comply with Title II of the ADA in its 

programs, including shelters. DOJ has the 

authority to enforce these obligations.

Segregated shelters

Institutions and segregated shelters (also known 

as ‘medical special needs shelters,’ ‘medical friendly 

shelters,’ ‘special needs shelters,’ and ‘Federal 

Medical Stations’ for people with disabilities) are 

perceived by public health professionals and others 

as a mechanism for keeping people with disabilities 

safe, an impression held despite the fact that 

disaster-impacted people were living successfully in 

the community prior to the disaster. Training should 

focus on the fact that actual safety is contingent on 

autonomy and self-determination rather than on 

isolating people with disabilities in congregate 

settings, even though the latter perspective is a 

more comfortable one for medically oriented 

caregivers.
National Council on Disability 57

Recommendation: NCD recommends that 

the Department of Justice monitor and 

enforce civil rights compliance with Titles II 

and III of the ADA regarding sheltering.

Recommendation: NCD recommends that 

DOJ and HUD monitor and enforce 

compliance with obligations for emergency 

sheltering in a disaster consistent with 

emergency sheltering requirements under the 

Fair Housing Amendments Act. Whether the 

disaster shelter is considered transient or longterm, the rights of people with disabilities in 

these shelters should be seamlessly 

protected.

Recommendation: NCD recommends that 

DOJ assess the equal access and nondiscrimination civil rights compliance 

performance of the American Red Cross and 

other shelter and mass care providers in 

relation to actions resulting in 

institutionalization of disaster survivors and 

issue orders for immediate corrective actions 

as needed.

Examples of public health professionals 

referring disaster-impacted people with disabilities 

to the more restrictive environment of segregated 

shelters were abundant on daily stakeholder calls 

held in the wake of Hurricane Florence. 

Stakeholders reported that Emergency 

Management Assistance Compact (EMAC) nurses 

from a state that routinely uses ‘special needs’ 

shelters repeatedly referred people to segregated 

shelters when they should have been referred to 

and provided reasonable accommodations in 

general community shelters. It was reported that 

EMAC nurses “did not understand the way that 

we do things in North Carolina.”

Across disasters, shelter managers and public 

health professionals had a tolerance for 

institutionalization that is inconsistent with the

Olmstead integration mandate. Many saw 

institutionalization as less than optimal, but were 

willing to use it as a “last resort." 

An article in the North Carolina Health News

described the people at a ”medical needs shelter” 

as follows: “Patients were mostly those with 

chronic diseases, ranging from people in hospital 

beds to a young man with a recent spinal cord 

injury, or a pair of older sisters, one blind, the other 

on a walker, who needed a little more than what a 

regular shelter could provide.”61 The author of this 

article seems to have adopted the medical model 

of disability, conflating people who have acute 

medical needs with people who have disabilities 

and need assistance to maintain their health, 

safety, and independence. 

Segregated shelters institutionalize people 

with disabilities for the same reasons that general 

shelters do. It is easier for people with disabilities 

to get “lost” within the institutional system once 

they have been separated from friends, family, and 

neighbors, and health may deteriorate in 

segregated shelters.

Segregated facilities are not appropriate to 

meet the disaster-related sheltering needs of 

people with disabilities who “don’t require the 

type and level of medical care that would ordinarily 
58 National Council on Disability

be provided by trained medical personnel in a 

nursing home or hospital." 62 These shelters have 

obligations under the ADA and, because most of 

such facilities receive federal funds, they also have 

obligations under the Rehabilitation Act.

Decision-making regarding who, when, and 

why disaster survivors with disabilities end up in 

segregated shelters requires those making 

decisions to interpret complex and contradictory 

sets of guidance from multiple federal agencies 

(DOJ, DHS, HHS). It is difficult to imagine how 

lawmakers, local government emergency 

managers, and shelter operators could arrive at 

decisions about who goes to segregated shelters 

in anything but an arbitrary way.

It seems clear that separating disaster-impacted 

people with disabilities from family, friends, and 

neighbors runs in deep contradiction to the Olmstead

integration mandate to provide services in the most 

integrated setting appropriate. Emergency managers 

often believe “special needs” and “medical shelters”

offer better conditions, including backup power and air 

conditioning. However, designated shelters for people 

with disabilities often have conditions that are worse 

than general population shelters. Like institutions, 

segregated shelters tend to offer inadequate services. 

Key stakeholders have reported that the movement of 

people from evacuation to shelters, emergency 

rooms, hospitals, and long-term care facilities are not 

recorded with any consistency or by using any 

connected tracking systems. Red Cross tracks their 

own shelter census information, but this data doesn't 

follow people moved among shelters. The National 

Disaster Medical System uses a very sophisticated 

Department of Defense “patient movement system”,

but this system does not share connectivity with any 

civilian systems. This failure is further compromised 

by the disconnect between Emergency Support 

Functions #6 (Mass Care) and Emergency Support 

Function #8 (Public Health and Medical Services). 

Currently, there is no systemic approach to the 

movement of people with disabilities taken out of 

general population settings during disaster cycle 

phases. The cycle begins with alerts, then proceeds 

through evacuation, sheltering, health maintenance, 

medical care, temporary housing, return 

home/permanent housing, resumption of work/school, 

and re-entry to functioning community systems and 

supports. Reliable tracking is especially important 

when people with disabilities are separated from 

family, placed in segregated shelters, or in any other 

way served differently than disaster-impacted people 

who don’t have disabilities. 

Because special needs registries are at best 

ineffective and at worst misused to steer people with 

disabilities into institutions.
National Council on Disability 59

Recommendation: NCD recommends that no federal funds-- including but not limited to 

federal funds from the U.S. Department of Homeland Security and the U.S. Department of 

Health and Human Services--be used in development, deployment, and maintenance of 

emergency ‘special needs’ registries exclusively created for people with disabilities.

Recommendation: NCD recommends that legislation be introduced to establish required 

documentation of all movement from the community, emergency shelters, and other general 

population settings to hospitals, nursing homes, assisted living, long-term care, rehabilitation, 

psychiatric institutions, hospice, and other medical facilities. Documentation should also include 

any movement among any of these community, institutional and medical facilities. The 

legislation should include specific mandates for CMS to act to ensure that each person 

(inclusive of people not receiving Medicare or Medicaid services) is provided with all of the 

services and supports required for successful return to the most integrated setting appropriate 

to their needs.

A lack of backup power for operating medical 

equipment in general community shelters is 

another planning failure that often leads to 

segregated sheltering. In some states, people 

needing backup power for 

c-pap, bi-pap, power 

wheelchairs, scooters, and 

other medical or assistive 

devices can only be 

accommodated in ‘special 

medical needs’ shelters 

due to lack of backup power plants throughout the 

shelter system. Even then, in North Carolina, 

during Hurricane Florence, people were expected 

to “bring their own backup power and connectors” 

to the ‘special medical needs’ shelters. In South

Carolina, backup power was only available in 

‘special medical’ shelters, however people were 

told that they would only be admitted if they 

brought their own caregivers, and that despite the 

descriptor of “medical needs shelters,” the level 

of care provided was described as “medical 

monitoring." Key 

informants reported that 

medical care was not 

provided in virtually every 

‘medical’ shelter opened 

during the period from 

2017-2018 (and earlier).63

The existing requirements in the CMS 

Emergency Preparedness Rule published by CMS 

in 2016 requires that backup power is provided in 

every long-term care facility. The National 

Sheltering System does not include any similar 

requirements or tracking of the availability of 

backup power.

64

A lack of backup power for operating 

medical equipment in general 

community shelters is another 

planning failure that often leads to 

segregated sheltering.
60 National Council on Disability

Recommendation: NCD recommends that 

the appropriate federal agency require that 

backup power is provided in every shelter 

identified throughout the National Shelter 

System. This requirement is like the existing 

requirements in the National Preparedness

Rule published by CMS in 2016.65

One disturbing example of “special medical 

needs” shelters failing to meet the needs of 

evacuees occurred in the “special medical needs” 

shelter in Goldsboro, North Carolina. This shelter 

was in a long-closed psychiatric institution, 

placement in which was described as traumatic for 

disaster survivors and shelter advocates with 

psychiatric disabilities. Exacerbating the trauma 

typically experienced by people with psychiatric 

disabilities who have been institutionalized, 

threatened with institutionalization, or fear 

institutionalization was that this particular 

institution had been a racially segregated facility 

until 1965 and was threatened with loss of federal 

funding in 2008 after alleged neglect led to the 

death of a resident.66 For reasons that remain 

unclear, people who stayed in this shelter who had 

COPD and other respiratory conditions 

experienced exacerbation of their conditions so 

great that they required admission to a hospital. 

Others were placed on antibiotics for respiratory 

conditions, urinary tract infections, and a variety of 

other medical issues not usually associated with 

sheltering.

Federal Medical Stations deployed by the HHS 

Office of the Assistant Secretary for Preparedness 

and Response at the request of states are 

described as sheltering resources that “sustain 

from 50 to 250 stable primary or chronic care 

patients who require medical and nursing services 

[providing] low acuity care for patients with chronic 

illnesses whose access to care is impeded due to 

the disaster.”67

Like the HHS CDC guidance, this guidance is 

contrary to the Olmstead integration mandate. 

Language used in this guidance is out of sync 

with the HHS Office for Civil Rights statement 

that generally does not support segregation of 

people with disabilities that are in shelters. 

Despite guidance from DOJ, CRCL and 

FEMA, disaster survivors with disabilities are 

often forced to be separated from family, 

friends, and neighbors in shelters designated 

solely for people with disabilities and their

assistants. These ‘medical special needs’ 

shelters,’ ‘medical friendly’ shelters, ‘special 

needs’ shelters, ‘Federal Medical Stations,’ and 

other similarly described facilities are the only 

type of emergency sheltering provided for many 

people with disabilities living in the community 

who do not have the need to be served in a 

nursing home or hospital. The use of these 

facilities has been prevalent in many of the 

recent disasters requiring evacuation of disasterimpacted communities. 

Shelters designated only for disaster survivors 

with disabilities have operated in Florida, 

Louisiana, South Carolina, North Carolina, Virginia, 

and other states with federal disaster declarations 

over the past three years. Most recently, the 

conditions in these segregated shelters have been 

described as “less than optimal."
National Council on Disability 61

As Senator Lowell Weicker, the original 

sponsor of the ADA, stated during consideration of 

the ADA's passage: "Separate is not equal. It was 

not for blacks; it is not for the disabled." Senator 

Edward Kennedy likened segregation of persons 

with disabilities to an "American apartheid," and 

Congress repeatedly invoked Brown v. Board of 

Education as a basis for prohibiting segregation 

based upon disability.”68‘ Evacuation Centers,’

including those funded with FEMA P-361 grant 

funds, are, despite the grant instructions, 

repeatedly described by local and state 

government as “different than shelters” and “not 

required to provide disability accommodations,” 

such as accessible bathrooms, personal 

assistance, interpreters, accessible cots, and other 

reasonable accommodations.69 A document 

written in response to Hurricane Lane in Hawaii 

about evacuation shelters indicated, under a 

column labeled “Access and Functional Needs,” 

that “Lack of trained staff and backup power is 

expected.” (See Appendix 1.)

Under the Rehabilitation Act, “entities 

selected to receive a grant, cooperative 

agreement, or other award of federal financial 

assistance from the U.S. Department of 

Homeland Security (DHS) or one of its 

Components, including State Administering 

Agencies must comply with civil rights 

obligations . . . Sub recipients have the same 

obligations as their primary recipient to comply 

with applicable civil rights requirements and 

should follow their primary recipient’s 

procedures regarding compliance with civil 

rights obligations.”70 However, time and again, 

people with disabilities are not being 

accommodated “in the most integrated setting 

appropriate to their needs, which is typically a 

mass care shelter." 71

Stakeholders report civil rights violations that 

were due to failure to provide necessary guidance, 

training and technical assistance to state and local 

government; failure to monitor compliance; and 

failure to enforce civil rights laws that apply before, 

during and after disasters. Contributing to these 

failures is contradictory information about the 

requirements for sheltering people with disabilities 

in emergencies and disasters.

Further confounding the problem with 

inconsistent civil rights guidance and lack of 

enforcement from the responsible federal 

agencies is a lack of clarity about which agency 

has ultimate responsibility for and ownership of 

the obligation for enforcing the requirement to 

provide sheltering to people with disabilities in the 

most integrated setting throughout emergencies 

and disasters. 

If federal responsibility is not already settled, 

ownership must be immediately assigned, and 

compliance enforced by the responsible federal 

agencies. If ownership has been determined, the 

responsible federal agency has failed to act, and 

this failure must be immediately addressed, and 

compliance enforced by the highest level of 

authority necessary. 

“Special needs” shelters are medically oriented 

facilities that lead to medically oriented solutions. 

They don’t provide adequate care and they are often 
62 National Council on Disability

very short-term options with heavy pressure to close 

quickly because of their high expense, a 

circumstance that may lead to immediate 

institutionalization. For example, in the 2006 flooding 

in Louisiana, the state opened a special needs 

shelter at Louisiana State University. The 

Department of Health and Human Services was 

requested to deploy Disaster Medical Assistance 

Teams to support the operation of this Federal 

Medical Station. It was reported on daily FEMA 

community stakeholder calls that this was at a cost 

of $500,000 each day. It was also reported that the 

University had established an end date for the use of 

their facility to accommodate a sports event. Cost 

and availability ultimately drove the decision to move 

approximately 100 people to institutions. Despite the 

fact that the Red Cross was actively working with 

the state to meet the sheltering needs of most of the 

special needs shelter residents in their general 

population shelters nearby, their offer was refused.

Recommendation: NCD recommends that 

DOJ issue a fact sheet defining monitoring 

and enforcement obligations in order to ensure 

compliance with civil rights requirements in 

the placement, tracking and use of federal 

funds associated with emergency and disaster 

sheltering of people with disabilities.

The double impact of non-compliance and 

inconsistent guidelines has resulted in the denial 

of equal access to emergency programs and 

services for disaster-impacted individuals with 

disabilities, violating their civil rights and leading to 

unnecessary institutionalization.

Transitioning out of shelters 

Lack of housing, including affordable and 

accessible housing, at the time that shelters close 

is a huge barrier, threatening the independence of 

people with disabilities and frequently leading to 

institutionalization.72 A man with a disability 

refused to leave a shelter in Louisiana during the 

2016 flooding. He was threatened with 

institutionalization until an advocate intervened. 

Once he could explain his reason for refusing to 

leave, it was learned that he had already secured 

housing several hours away, and he had arranged 

to purchase a car to drive there as soon as $5,000 

approved by FEMA was deposited in his account 

so he could complete the purchase. 

Difficulties transitioning from shelters to the 

community are exacerbated when people are moved 

to distant shelters or moved multiple times, often 

without notification of loved ones. Following Hurricane 

Michael, a stakeholder reported that people were 

transported from a ‘special needs’ shelter in Panama 

City, Florida, to an unknown location that was a sevenhour drive from the original shelter. Similar instances 

were reported during other disasters, including the 

Jefferson County, Texas, evacuation reported by CNN 

and previously described. 

Repeatedly, people with disabilities who were 

described as “pre-disaster homeless” are the last 

residents of shelters. In many communities, the 

previously existing homeless services have been 

interrupted or eliminated. As a result, people are 

institutionalized either because they have nowhere to 

go or because health deterioration due to lack of 

health maintenance requires medical care.
National Council on Disability 63

Recommendation: NCD recommends that FEMA immediately fund a national initiative to 

identify, catalog, track real time availability of, and reserve all accessible hotel and motel rooms 

for, use throughout the FEMA Transitional Sheltering Assistance (TSA) program. This must 

include identification of guest rooms with roll-in showers, accessible kitchens, and

accommodations for people with vision and hearing disabilities and chemical sensitivities.

Recommendation: NCD recommends that Independent Living Center staff, other affordable 

and accessible housing experts and experts on disability and community living, be funded by 

FEMA, HHS (ACF and ACL) and HUD to provide individual and household disaster case 

management focused on the transition and permanent housing and community living needs of 

disaster-impacted people with disabilities. Disaster case management for housing, community 

living, and related needs must begin no later than one week after an Individual Assistance 

Disaster Declaration is declared by the president. All short-term and long-term disaster case 

management must be delivered by qualified disability culturally competent community living 

experts and continue until each disaster survivor with a disability is housed in permanent 

housing that is in the most integrated setting appropriate to their needs, with all necessary 

supports and services in place.

Housing shortages 

The Disaster Recovery Housing Coalition, led 

by the National Low Income Housing Coalition, 

called on Congress to “make certain that federal 

disaster recovery resources reach all impacted 

households, including those with the lowest 

incomes who are often the hardest-hit by disasters 

and have the fewest resources to recover 

afterwards.”73

A DHS listening session participant shared the 

following anecdote:

A family of six, including three children with 

disabilities, was living in HUD housing that was 

deemed substandard and condemned by HUD. 

They stayed in the home because they had 

nowhere else to go. During the cold weather of 

December, the home burned down. The family 

was living in their car as of February 2018. The 

children with disabilities, like all children with 

disabilities experiencing homelessness, were at 

increased risk of institutionalization.

As of late February 2018, six months after 

Hurricane Harvey, 27,000 people in Texas were 

without permanent housing solutions. Two 

months later, the numbers had not diminished 

markedly. One year after the hurricane, the 

disaster hotline continued to receive daily calls 

from panicked survivors desperate for housing, 

and often reporting that they are within hours of 

homelessness.

Admission to an institution during and after a 

disaster may result in long-term institutionalization. 
64 National Council on Disability

This may occur when loved ones, advocates, and 

allies lose track of where the person with a 

disability was ultimately placed. This is particularly 

problematic for people who don’t communicate 

verbally and/or have intellectual disabilities. Public 

health professionals underestimate how difficult it 

is for disaster survivors with disabilities to move 

back to the community after institutionalization. 

The shortage of affordable accessible housing 

across the country is exacerbated following 

disasters. This contributes to the institutionalization 

of people with disabilities. Numerous key informants 

reported that shelter operators and disaster recovery 

workers were more likely to refer people with 

disabilities to nursing homes and other institutions 

when it was perceived that this was the only 

alternative to homelessness. In other words, if they 

perceived the choices as between sending a person 

with a disability to a nursing home or to a homeless 

shelter, they valued institutionalization as a better 

option. This choice is made easier by the CMS 

waiver to expedite nursing home placement.

Institutionalization of people with disabilities due 

to lack of affordable, accessible and conventional 

housing is a public policy failure that extends beyond 

failing to provide equal access to disaster-related 

programs and services. Even if people with 

disabilities were provided equal access to programs 

and services, institutionalization would still be an 

issue due to the shortage of affordable, accessible 

and conventional housing.

The goal of disaster recovery is always to 

reestablish the full function of every community 

impacted by disasters. Permanent housing is a 

fundamental element of recovery. For people with 

disabilities and their families, accessible, affordable 

housing located in proximity to goods, systems, 

services, and networks is vital to their community 

participation, inclusion, and independence.

Housing resources are scarce in every 

community before disaster strikes. The issue is 

exacerbated when housing is damaged or destroyed, 

causing disproportionate upheaval, relocation, and 

service disruption which may result in 

institutionalization of people with disabilities. And yet, 

programs and services to address the consequences 

of disasters are routinely overlooked in planning.

Guardianship and abandonment 

Legal mechanisms by which people with 

disabilities may be institutionalized during and after 

disasters include civil commitment and 

guardianship/conservatorship state statutes. 

People were civilly committed or threatened 

with such because they refused to comply with 

evacuation orders. Most notoriously this happened in 

Florida where people were committed under what is 

known in Florida as the Baker Act (Florida Statute 

394.451-394.47891). On March 20, 2019 WJCT 

Public Media reported that Bay County Florida School 

District Superintendent Bill Husfelt told the Florida 

State Board of Education that “before the storm, 

there were 738 homeless students in the district. 

Now, there are more than 4,800.” “There have been 

700 Community of Care referrals to mental health 

agencies. We’ve had 70 baker acts since we’ve 

reopened, 35 since Feb. 25th, 62 since Christmas 

Break.” He added that “One of the youngest 

students to be involuntarily committed under the 

state's Baker Act was 6-years-old.” 74
National Council on Disability 65

Recommendation: NCD recommends that HUD establish metrics and measure the 

nationwide availability of the ready supply of accessible, adaptable, affordable, and disasterresistant permanent and temporary housing.

Recommendation: NCD recommends that FEMA and HUD create a system for collecting and 

publishing all disaster recovery and mitigation expenditures for housing that is subject to 

compliance with requirements under the Rehabilitation Act, Fair Housing Amendments Act, 

and the ADA. This reporting system must measure and report compliance with accessibility 

standards.

Recommendation: NCD recommends that HUD compiles these and their other annually 

reported federally funded housing accessibility data, with an intent to provide measurable 

increases in the federal investments in accessible housing.

Civil commitment, guardianship and 

conservatorship was used in other disasterimpacted states as well, to facilitate 

institutionalization during and after disasters. 

According to Disability Rights Texas, hospitals 

attempted to place people with disabilities under 

temporary guardianship in order to force 

placement in a nursing facility against the person’s 

wishes; the legal mechanism was Chapter 1251 of 

the Texas Estates Code. These actions were 

prevented by Disability Rights Texas. Even with 

laws in place to protect rights; however, waivers 

have routinely been granted by the Centers for 

Medicare and Medicaid Services (as discussed 

earlier), forcing people into nursing homes in other 

states for the convenience of hospitals, with no 

consideration of the needs or rights of the person 

and without guardianship or conservatorship 

actions.

Because public health, medical, and local 

emergency officials may regard people with 

disabilities, including older adults, from a 

perspective of paternalism, they may decide that 

conditions in a nursing home are superior and the 

environment safer than the person’s home. This is 

particularly true when the person lives in lowincome housing or a mobile home. Key informants 

report that public health, medical, and local 

emergency officials sometimes see the person 

with a disability as being “better off” in a nursing 

home.

During disasters, it is often reported that 

people with disabilities are abandoned at 

emergency rooms and nursing homes. These 

people are abandoned by family and paid 

caregivers who may take this drastic step because 

of inadequate planning and limited resources or 

simply an abdication of responsibility. Other 

causes may be a basic lack of equal access to 

services for the person with a disability, and the 

inability of family members and paid caregivers to 

meet the needs outside of the home. 
66 National Council on Disability

Abandonment may be a hostile or compassionate 

act, but the result—institutionalization—is usually 

the same. Whatever the motive, failure to plan for 

the needs of people with disabilities in disasters 

forces a broken system to provide services, which 

will almost always result in institutionalization.

Recommendation: NCD recommends that 

DOJ and HHS monitor and enforce the ADA 

Olmstead integration mandate and 

Rehabilitation Act obligation to use federal 

funds in compliance with requirements to 

serve people in the most integrated setting 

appropriate to their needs inclusive of disasterimpacted people with disabilities who have 

been subjected to civil commitment or have 

guardians/conservators.

Other instances of abandonment were 

reported on stakeholder calls and by key 

informants. One key informant described disasterimpacted people, including people with disabilities, 

being dropped off by the National Guard at a gas 

station in North Carolina at night. When the key 

informant discovered the abandoned group, the 

evacuees said they thought they were being 

brought to a shelter, but the shelter had either 

been closed or located elsewhere and the National 

Guard told them someone else would come to 

pick them up. No one ever came.

In Florida, during Hurricane Michael, rescuers 

found a group of over 70 people with disabilities 

and older adults at a hotel in the Panama City area, 

many of whom had been abandoned at the hotel. 

Hotel staff were doing what they could to help, but 

several people were in urgent need of medical 

assistance. Some needed oxygen, others had 

complex needs that hotel staff were ill-equipped to 

meet. The rescuers believed that most of these 

individuals came from a long-term care facility, but 

others had been dropped off there, as well. 

Ultimately, rescuers were able to help some to 

reunite with family, but others were 

institutionalized. One young man, who has 

quadriplegia, was able to leave with his family, but 

his custom-power wheelchair was left behind on 

an upper floor of the hotel.

Recommendation: NCD recommends that 

the federal entity (typically FEMA and DHS) 

providing funds that are ultimately received by 

local emergency management requires 

participation of local staff in training and 

demonstration of the scope of their obligations 

under the Rehabilitation Act regarding people 

with disabilities who have been abandoned 

during evacuation, sheltering, and transition to 

long-term housing.

Recommendation: NCD recommends that 

DOJ monitor and enforce civil rights 

compliance throughout all phases of disaster 

response to prevent abandonment on the part 

of government entities, such as National 

Guard and other recipients and subrecipients 

of federal financial assistance.
National Council on Disability 67

Chapter 4: Practices to Curtail and Prevent 

Institutionalization

n this chapter, practices thought to curtail and 

prevent institutionalization of people with 

disabilities during and after disasters is 

examined. The efficacy of these practices 

informed the recommendations listed in Chapter 5.

Promising practices to curtail 

institutionalization during and after 

disasters 

Promising practices include national and local 

stakeholder calls led by people with disabilities 

that provide a forum during which stakeholders—

including staff members 

from Centers for 

Independent Living, 

mayor’s offices on disability 

issues, emergency 

management offices, Red 

Cross, state/territorial and 

federal agency departments, protection and 

advocacy systems, and other key entities—shared 

anticipated and existing barriers to equal access to 

disaster-related programs and services, as well as 

resources. The calls were a daily resource for 

solving complex problems, such as situations 

involving the potential or actual institutionalization 

of disaster-impacted people with disabilities of all 

ages. These calls were a consistent source of 

documented information that brought to light 

patterns of circumstances leading to 

institutionalization. 

Another good practice is the disaster hotline 

established by the Partnership for Inclusive Disaster 

Strategies, a disability community-led initiative 

staffed by experts in community living. Before, 

during and after disasters, disaster hotline staff 

facilitated rescue, provided local resource referrals, 

and, in partnership with Trach Mommas of Louisiana 

and the Pass It on Center, identified, matched and 

delivered durable medical equipment, disability 

supplies, and assistive 

devices to people whose 

disability-related items were 

lost, damaged, or destroyed. 

This assistance prevented 

institutionalization.

The leadership of local 

disability organizations is critical to meeting the 

needs of people in disaster-impacted 

communities. When Centers for Independent 

Living, University Centers for Excellence in 

Developmental Disabilities, developmental 

disabilities councils, Protection and Advocacy 

systems, and other local disability groups were 

functional, they were always the most 

knowledgeable sources of immediate local 

solutions preventing institutionalization.

I

The leadership of local disability 

organizations ... were always the 

most knowledgeable sources of 

immediate local solutions 

preventing institutionalization.
68 National Council on Disability

However, their efforts were continually 

suppressed by numerous factors, including 

exclusion from disaster funds and resources; 

power plays by the traditional disaster relief 

leadership organizations; actions of medical 

model outsiders; charity model activity; media 

coverage that embraced stereotypes; and 

volunteerism in place of disability experts 

qualified to assure that the civil rights of people 

with disabilities are upheld at all times 

throughout the disaster cycle. 

Local disability organizations are also key 

resources for helping disaster survivors apply for 

FEMA and other government and nongovernment disaster relief programs and 

services. This assistance is especially important 

because of significant problems navigating the 

complexities of these eligibility processes. 

When disaster survivors with disabilities receive 

assistance, they are far more likely to remain in 

the community.

According to FEMA, there are ongoing 

attempts to improve its registration process, 

which includes help desks for call centers and 

website and mobile app access. There is 

currently a work group tasked with improving 

question 24 on the Individual Assistance 

registration form. Due to aging IT infrastructure 

and required governmental processes to amend, 

the registration process, including reasonable 

accommodations, remains unchanged. 

During the response to Hurricane Florence, 

Centers for Independent Living in both North 

and South Carolina took a lead in preventing 
National Council on Disability 69

institutionalization despite very formidable and 

conflicting directives from federal and state 

government. 

Recommendation: FEMA should explore 

ways to expeditiously modify its Individual 

Assistance registration process to curtail the 

incidence of institutionalization of individuals 

with disabilities.

One of many examples of good practice 

was demonstrated by the ADA Center for 

Independent Living in Raleigh, North Carolina, 

which embedded their staff in a “special 

medical needs shelter.” This shelter was 

established in a closed state psychiatric hospital. 

The Center recognized quickly that the people 

sent to this shelter were being considered for 

institutionalization, and that there was no one 

responsible for discharge planning or tracking 

from one setting to another. They provided 

significant guidance and technical assistance 

that ultimately prevented all but six of over one 

hundred evacuees from being institutionalized. 

Strong ties to communities are invaluable. 

Neighbors assisted people with disabilities in 

obtaining food, waiting in 

line, and other ways 

during and after disasters. 

The more connected with 

the community a person with a disability is the 

more likely they will be assisted by friends and 

neighbors. When a person with a disability is

isolated from the community, they are unable to 

make friendships and forge relationships with 

neighbors and other community members who 

could assist them. A neighbor is more likely to 

approach and help someone they know. Strong 

community connections help prevent 

institutionalization.

Recommendation: NCD recommends that 

DHS/FEMA and HHS/ACL provide grant funds 

to support Independent Living Centers in their 

support of disaster-impacted people with 

disabilities in their community. This support 

incorporates all core services, including their 

obligations for preventing and diverting 

institutionalization of disaster-impacted people 

throughout disaster response and recovery.

Teams of disability experts were deployed 

to Puerto Rico and the U.S. Virgin Islands. 

These teams worked on the ground to 

supplement the work of local disability 

organizations who were devastated by 

Hurricane Maria, and to prevent both 

institutionalization and loss of life. Portlight 

also supported the development of a network 

of disability organizations in Puerto Rico which 

has become a formidable force for change as 

the Island recovers. 

Although mainstream 

funding has continued to 

elude many disability 

organizations, these organizations continue to 

address both current and future readiness and 

disaster resilience, both of which are 

imperatives to preventing institutionalization.

Previous efforts to place qualified disability 

Strong community connections help 

prevent institutionalization.
70 National Council on Disability

experts into all areas of federal preparedness, 

response, and recovery initiatives have been 

relegated to the workloads of unqualified 

generalists.

Recommendation: NCD recommends that 

federal agencies with disaster response and 

recovery responsibilities immediately place 

disability experts identified from the National 

Qualification System on meeting the civil 

rights of disaster-impacted people with 

disabilities to prevent institutionalization in the 

field in support of all FEMA Joint Field Offices 

and Area Field Offices.

Individualized accommodations as 

an approach to curtailing 

institutionalization 

during and after 

disasters 

As stated above, 

accommodations that 

provide equal access to 

disaster-related 

programs and services 

are required by federal 

law. The need for disaster-related 

accommodations is always foreseeable. 

However, providing them to prevent 

institutionalization requires both anticipating and 

solving problems. Effective problem-solving also 

requires a commitment to serving people with 

disabilities in the most integrated setting 

appropriate to their needs under all 

circumstances. 

Even though failure to plan for providing 

individualized accommodations is not a valid

reason for choosing institutionalization, it is 

frequently cited as a necessary solution “in light 

of the disaster." Institutionalization is neither an 

alternative of first resort nor last resort. 

Institutionalization should not be an acceptable 

option for disaster-impacted people with 

disabilities. 

Providing accommodations quickly and 

creatively can prevent institutionalization and 

allow disaster-impacted people to successfully 

remain in the community. Some examples of 

accommodations that can prevent 

institutionalization in shelters and throughout 

disaster service delivery include:

 Alternative environments, such as quiet 

and low stimulation space, to 

accommodate people who 

are neurodivergent; those 

with mental health needs; 

and others who can best 

maintain their health, 

safety, and independence 

with the provision of these 

accommodations. 

 Accessible toilets and showers wherever 

disaster survivors may need them.

 Provision of durable medical equipment, 

assistive devices, disability supplies, and 

other resources vital to health maintenance 

and independence. These may be needed 

as replacements for lost, damaged, or 

destroyed items, or they may be necessary 

for functioning in an environment different 

from the person’s home and usual 

Even though failure to plan for 

providing individualized 

accommodations is not a valid reason 

for choosing institutionalization, it is 

frequently cited as a necessary 

solution “in light of the disaster."
National Council on Disability 71

environment. (Many people can navigate 

short distances in familiar settings but 

would need a mobility device to navigate 

the distances between sleeping,

bathroom, meal, and other key locations in 

a shelter or at a Disaster Recovery Center.)

 Provision of sign language interpreters; 

open captioning; batteries for hearing aids 

and cochlear implants; tactile wayfinding; 

use of plain language; and pictograms and 

actionable information in alternate formats, 

including formats that are accessible to 

people who are Deafblind, people with 

intellectual disabilities, and people with low 

literacy. Alternatives for people with 

chemical sensitivities and allergies should 

be available as well.

 Training of first responders, shelter, and 

disaster relief workers to problem-solve 

rather than medicalize disability.

Strategies for strengthening 

promising practices 

Outcome-driven and evidence-based 

practices are an imperative for meeting the 

disaster-related needs of people with 

disabilities; in addition, they are critical to 

achieving and maintaining community resilience 

for all.

Promising practices must be acquired, 

tested, and replicated before disasters strike. 

Exercises must pose real challenges that test 

prevention of institutionalization. During 

disasters, the effectiveness of these practices 

must be measured, and continual improvement 

strategies employed. After Action reporting 

should not be an opportunity to absolve failure, 

but rather an opportunity for continual 

improvement by means of careful examination 

and development of updated goals, objectives, 

priorities, processes, and procedures.

Recommendation: NCD recommends that 

HHS establish a process for states and 

territories for loaning and replacing durable 

medical equipment, consumable medical 

supplies, assistive technology, disability 

services and supports, as well as disaster case 

management to disaster survivors with 

disabilities in order to provide equal access 

and non-discrimination throughout emergency 

response to meet immediate health, safety, 

and independence needs.

Strategies to strengthen implementation of 

good practices include the following 

recommendations:

Recommendation: NCD recommends that 

Congress enact legislation by expansion of the 

previously introduced 2018 READI for 

Disasters Act, the 2019 REAADI in Disasters 

Act.

The 2019 REAADI for Disasters Act will:

 Establish a research center to be defined in 

legislation, such as in the READI in Disasters 

Act to conduct research to determine 

recommended practices for including people 

with disabilities and older adults in planning 
72 National Council on Disability

during and following disasters. The research 

should include its focus on but not limited to:

o Ensuring that universal design is ‘baked 

into’ all aspects of preparedness, response, 

and recovery, not tangentially considered as 

afterthought or annex.

o Making certain that people with disabilities 

are ‘at the table’ and that their role is real, 

not tokenized, using a ‘nothing about us, 

without us’ philosophy.

o Designating qualified people with disabilities 

to serve in leadership roles.

o Ensuring that disability organizations are key 

stakeholders throughout preparedness, 

planning, response, recovery, mitigation, 

and community resilience initiatives. 

o Compensating disability organizations 

commensurate with prevailing pay 

scales.

 Establish a “projects of national significance”

program to increase the involvement of people 

with disabilities and older adults in the planning 

and response to disasters and identify 

strategies for reducing deaths, injuries, and 

losses to those groups as a result of disasters.

 Establish a National Commission on Disability 

Rights and Disasters that will provide 

recommendations on how to ensure effective 

emergency preparedness, disaster response, 

recovery, and community resilience efforts for 

people with disabilities and older adults.

 Establish Training and Technical Assistance 

Disability and Disaster Centers that provide 

comprehensive training, technical assistance, 

development of funding sources, and support 

to state, tribal, and local disaster relief; public 

health entities; social service agencies; and 

stakeholder groups.
National Council on Disability 73

Chapter 5: Recommendations

ithout immediate and aggressive 

policy and practice changes, the

continued institutionalization of 

disaster-impacted people with disabilities is 

inevitable.

NCD’s recommendations are urgent. This is 

due to continued devastation from the number 

and intensity of disasters, and their 

disproportionate impact on children and adults 

with disabilities and older adults.

The following recommendations provide a 

roadmap toward outcomes that preserve the 

freedom of the 61 million people with 

disabilities whose right to equal access before, 

during and after disasters will be threatened as 

soon as the next disaster strikes. 

Recommendations, continued

1. NCD recommends passage of legislation such as the READI in Disasters Act and the 

Disaster Relief Medicaid Act should be passed and enacted immediately to address gaps in 

meeting civil rights obligations to people with disabilities impacted by disasters.

2. NCD recommends that Congress require CMS to establish a process for Medicaid 

portability among states and territories during disasters to ensure uninterrupted health 

maintenance and medical care in the least restrictive environment for Medicaid recipients. 

3. NCD recommends federal entities require that all recipients and subrecipients of federal 

funds receive training in the scope of their obligations to people with disabilities. This 

training must include information advising that federal funds may be revoked due to 

noncompliance with the obligation to receive services in the most integrated setting 

appropriate and that this obligation applies during disasters. 

4. NCD recommends federal entities monitor recipients and subrecipients of federal funds to 

ensure compliance throughout all disaster-related placement decisions by recipients and 

subrecipients of federal financial funds.

5. NCD recommends that the federal entity (typically FEMA and DHS) providing funds that are 

ultimately received by local emergency management requires participation of local staff in 

W
74 National Council on Disability

Recommendations, continued

training and demonstration of the scope of their obligations under the Rehabilitation Act 

regarding people with disabilities who have been abandoned during evacuation, sheltering, 

and transition to long-term housing.

6. NCD recommends that federal agencies responsible for emergency preparedness, 

community resilience, and disaster-related services, programs, supports, or activities must 

engage with national, state, and local coalitions of disability-led organizations and 

stakeholders. These federal agencies include but are not limited to: DHS, FEMA, CRCL, 

HHS, ASPR, ACL, ACF, ILA, CDC, HUD, DOT, DOJ, DRS, ED, OSERS, DOL, ODEP, DOD, 

Veterans Affairs, U.S. Access Board.

7. NCD recommends that FEMA lead a review of the National Response Framework, 

Emergency Support Function Annexes, and Federal Interagency Operations Plans and all 

other applicable federal doctrine to determine any required updates to specifically address 

responsibility for meeting the equal access, health maintenance, safety, and independence 

needs of children and adults with disabilities to prevent institutionalization.

8. NCD recommends that ED takes immediate action to ensure that disaster-impacted 

students with disabilities are not excluded from returning to school with their peers and 

that all supports and services included on their IEP or Section 504 plan are provided without 

interruption. This includes providing services during school closure and upon school 

reopening in order to meet their individualized educational needs and to prevent 

institutionalization.

9. NCD recommends that FEMA’s ESFLG establish a seamless and integrated process in 

Emergency Support Functions #6 and #8 to prioritize health maintenance for children and 

adults with disabilities and seamlessly deliver services and supports to people in the most 

integrated setting throughout evacuation, temporary housing, and disaster recovery.

10. NCD recommends that Congress amend the Stafford Act to require HHS to have active 

engagement with disability organizations with specific expertise and involvement in 

national disability inclusive emergency management policy and practice. The provision 

should be similar to those in PKEMRA requiring community engagement by FEMA.

11. NCD recommends that Congress authorize and appropriate funds for DHS and FEMA to 

provide disaster preparedness grants specifically targeted to organizations led by and 

serving marginalized communities, including but not limited to people with disabilities 
National Council on Disability 75

Recommendations, continued

experiencing poverty; people with disabilities experiencing homelessness; women with 

disabilities; people of color with disabilities; and members of the LGBTQ community with 

disabilities.

12. NCD recommends that DOJ and HHS monitor and enforce the obligation under both the 

ADA and the Rehabilitation Act to serve people in the most integrated setting appropriate 

to their needs. 

13. NCD recommends that the FCC reestablish its Emergency Access Advisory Committee to 

establish effective communication access requirements for alerts, warnings and 

notification, including provision of American Sign Language and other existing and new 

assistive technology. These guidelines should be developed in consultation and 

collaboration with DOJ, applying the requirements for equal effective communication 

access. Implementation should include monitoring and enforcement by the FCC and DOJ. 

14. Because special needs registries are at best ineffective and at worst misused to steer 

people with disabilities into institutions, NCD recommends that no federal funds, including 

but not limited to federal funds from the U.S. Department of Homeland Security and the 

U.S. Department of Health and Human Services, be used in development, deployment, and 

maintenance of emergency ‘special needs’ registries exclusively created for people with 

disabilities.

15. NCD recommends that the Federal Mass Evacuation Plan, PKEMRA evacuation planning 

requirements, and any other plans that use federal funding for evacuation be reviewed by 

the Department of Justice, Department of Transportation, Department of Homeland 

Security, and other federal agencies with a role in planning, implementing and/or funding 

evacuation initiatives to ensure compliance with disability civil rights obligations throughout 

disaster response and implement all necessary corrective action immediately.

16. NCD recommends that HHS (CMS) in collaboration with all other federal entities with 

admission and monitoring or funding and reimbursement obligations maintains 

responsibility for ensuring that all admissions to hospitals and long-term care facilities 

during and after disasters are monitored and that people placed are provided with the 

assistance needed to return to their community with all supports and services they need to 

regain and maintain their independence.
76 National Council on Disability

Recommendations, continued

17. NCD recommends that DOJ and other federal entities with enforcement authority:

a. Monitor and prohibit the automatic placement of individuals with disabilities in hospital 

and nursing home settings and direct state and local entities to immediately provide 

supports and services in the most integrated setting appropriate to any person who 

does not need this level of care.

b. Monitor and enforce civil rights compliance with Titles II and III of the ADA regarding 

sheltering.

18. NCD recommends that DOJ and HUD monitor and enforce compliance with obligations for 

emergency sheltering in a disaster consistent with emergency sheltering requirements 

under the Fair Housing Amendments Act. Compliance should be expected in both transient 

and long-term disaster shelters. 

19. NCD recommends that Congress enact legislation by expansion of the previously 

introduced 2018 REAADI for Disasters Act, the 2019 READI in Disasters Act to:

a. Establish a research center to be defined in legislation, such as the READI in Disasters 

Act to conduct research to determine recommended practices for including people with 

disabilities and older adults in planning during and following disasters.

b. Establish a “projects of national significance” program to increase the involvement of 

people with disabilities and older adults in the planning and response to disasters and 

identify strategies for reducing deaths, injuries, and losses to those groups as a result of 

disasters.

c. Establish a National Commission on Disability Rights and Disasters that will provide 

recommendations on how to ensure effective emergency preparedness, disaster 

response, recovery, and community resilience efforts for people with disabilities and 

older adults.

d. Establish Training and Technical Assistance Disability and Disaster Centers that provide 

comprehensive training, technical assistance, development of funding sources, and 

support to state, tribal, and local disaster relief; public health entities; social service 

agencies; and stakeholder groups.

e. Require DOJ to create an oversight committee that will review all ADA settlement 
National Council on Disability 77

Recommendations, continued

agreements related to disaster-response activities for the years 2005 to 2017.

20. NCD recommends that Congress request a report from GAO to investigate whether past 

federal disaster funds have been used to ensure accessibility to emergency programs and 

services.

21. NCD recommends that DOJ provide pointed guidance to sister federal agencies to address 

the issue of outdated regulations that conflict with the Olmstead integration mandate. 

22. NCD recommends that Congress require agencies to document the transfer of people with 

disabilities from the community, emergency shelters, and other general population settings 

to hospitals, nursing homes, assisted living, long-term care, rehabilitation, psychiatric 

institutions, hospice, and other medical facilities. Documentation should include any 

movement among any of these community, institutional, and medical facilities. The 

legislation should include specific mandates for CMS to take to ensure that each person 

(inclusive of people not receiving Medicare or Medicaid services) is provided with all of the 

services and supports required for successful return to the most integrated setting 

appropriate to their needs. 

23. NCD recommends that Congress requires that HHS establishes a data collection system 

and that data collection begins immediately after the next federally declared disaster. The 

system must identify every impacted individual who was moved to an institutional setting 

and quantify movement and displacement of all impacted people in the aggregate.

24. NCD recommends that HHS provides funding to the University of Minnesota Institute on 

Community Integration University Center on Excellence in Disabilities Residential 

Information Systems Project (RISP) to expand their research on institutionalization during 

and after disasters in all states and territories to include people with all types of disabilities.

25. NCD recommends that DOJ assess the equal access and non-discrimination civil rights 

compliance performance of the American Red Cross and other shelter and mass care 

providers in relation to actions resulting in institutionalization of disaster survivors and issue 

orders for immediate corrective actions as needed.

26. NCD recommends that DOJ issue a fact sheet that defines monitoring and enforcement 

obligations in order to ensure compliance with civil rights requirements in the placement, 
78 National Council on Disability

Recommendations, continued

as well as to track and use of federal funds associated with emergency and disaster 

sheltering of people with disabilities.

27. NCD recommends that Congress appropriate funds for FEMA to immediately commence a 

national initiative to identify, catalog, track real time availability of, and reserve all accessible 

hotel and motel rooms for, use throughout the FEMA Transitional Sheltering Assistance 

(TSA) program. This must include: Identification of guest rooms with roll-in showers, 

accessible kitchens, and accommodations for people with vision and hearing disabilities 

and chemical sensitivities.

28. NCD recommends that Independent Living Center staff and other affordable and accessible 

housing experts be funded by FEMA, HHS (ACF and ACL) and HUD to provide individual 

and household disaster case management focused on the transition and permanent 

housing needs of disaster-impacted people with disabilities.

29. NCD recommends that Congress appropriate funds for FEMA, HHS (ACF and ACL) and 

HUD to fund Independent Living Center staff and other affordable and accessible housing 

experts to provide individual and household disaster case management focused on the 

transition and permanent housing needs of disaster-impacted people with disabilities.

30. NCD recommends that HUD establish metrics and measure the nationwide availability of 

the ready supply of accessible, adaptable, affordable, and disaster-resistant permanent and 

temporary housing. 

31. NCD recommends that FEMA and HUD create a system for collecting and publishing all 

disaster recovery and mitigation expenditures for housing that is subject to compliance 

with requirements under the Rehabilitation Act, Fair Housing Amendments Act, and the 

ADA. This reporting system must measure and report compliance with accessibility 

standards. 

32. NCD recommends that DOJ monitor and enforce civil rights compliance throughout all 

phases of disaster response to:

a. Prevent abandonment on the part of government entities, such as National Guard and 

other recipients and subrecipients of federal financial assistance. 

b. Ensure compliance throughout all disaster related placement decisions made by 

recipients and subrecipients of federal financial assistance.
National Council on Disability 79

Recommendations, continued

c. Ensure compliance with Titles II and III of the ADA pertaining to sheltering.

33. NCD recommends that FEMA explore ways to modify their Individual Assistance 

registration process expeditiously to curtail the incidence of institutionalization of individuals 

with disabilities. 

34. NCD recommends that federal agencies with disaster response and recovery 

responsibilities, specifically the 25-plus federal agencies included in Executive Order 13347, 

which established the Interagency Coordinating Council on Emergency Preparedness and 

Individuals with Disabilities (ICC), to collaborate to ensure moving forward that emergency 

preparedness plans incorporate the perspectives and needs of individuals with disabilities, 

and that barriers to access, services, and planning are removed.

35. NCD recommends that the member agencies of the ICC should place disability experts in 

the field and in support of all FEMA Joint Field Offices and Area Field Offices throughout 

disaster operations. These experts must be qualified by either the FEMA Qualification 

System or the National Qualification System to insure adequate expertise in guiding 

compliance with the civil rights of disaster-impacted people with disabilities to prevent 

institutionalization.

36. NCD recommends that HHS establish a process for states and territories for loaning and 

replacing durable medical equipment, consumable medical supplies, assistive technology, 

and disability services and supports--as well as disaster case management to disaster 

survivors with disabilities-- in order to provide equal access and non-discrimination 

throughout emergency response to meet immediate health, safety, and independence 

needs.

37. NCD recommends that the Veterans Administration and HHS collaborate to ensure 

disaster-related services for veterans are integrated with all other emergency and disaster 

services to address the current gap in coordination between services for veterans with 

disabilities and services for other people with disabilities.
80 National Council on Disability
National Council on Disability 81

Appendix 1

(American Red Cross Logo)

DR 694-18 Hurricane Lane, HI

Red Cross role in Hurricane Evacuation Centers and Shelters

August 23, 2018

DR 694-18 Hurricane Lane, HI

Red Cross role in Hurricane Evacuation Centers and Shelters

Summary

The Hawaii State Emergency Operations Plan, Hurricane Evacuation Shelters Planning and 

Operations Guidelines December 2017 document clarifies the Red Cross and local government role 

during and after a major hurricane.

National guidance that is used in most CONUS evacuations that is NOT being used is identified 

in italic text below.

State ESF 6 Agencies:

Primary: Dept. of Defense: HI-EMA; Dept of Human Services; Red Cross

Support: Dept. of Accounting & General Services, Office of Elections; Dept. of Agriculture; Dept. 

of Attorney General; Dept. of Business, Economic Dev. & Tourism; Hawaii Tourism Authority; Dept. of 

Education; Dept. of Hawaii Home Lands; Dept. of Health; Dept. of Human Service; Public Housing 

Authority; Dept. of Labor and Industrial Relations; University of Hawaii; General Contractors Assn.; HI 

Assn. of Animal Welfare Agencies; HI Food Industry Assn.; HI Veterinary Medical Assn.; State VOAD.
82 National Council on Disability

Evacuation Centers

Activity Local Government Role Red Cross Role

Public messaging on evacuation 

decision

Communities are encouraged to 

shelter in place at home, work, 

or with friends and family and 

only take refuge in a shelter if 

their primary home or other 

option is not safe. Messaging 

emphasizes that no services, 

food or supplies will be 

provided.

None stated.

Typically, Red Cross expects 

evacuation orders along coastal 

areas to result in large inland 

evacuation shelter populations.

Sheltering operations Counties are the designated 

operating agency on shelters.

Shelters are described as 

“Hurricane Evacuation Centers” 

to avoid confusion with typical 

sheltering.

Supplies and Services No supplies or services are 

provided, including cots, 

blankets, or food. Residents are 

expected to bring their own 

food, water, and medicine.

None stated.

During East Coast evacuation 

sheltering, 10 % supply of cots, 

food, and limited medical 

services are planned.
National Council on Disability 83

Activity Local Government Role Red Cross Role

Staffing Minimal staffing, expected 

below national recommended 

standards.

Red Cross staff are asked to 

augment county staff (3-5 

workers), particularly where 

there are staffing shortages. 

Also, shelter managers and 

workers are trained by Red 

Cross prior to an event from 

county EMA and Dept. of 

Education staff.

If Red Cross staff are supporting 

a government shelter, the 

expectation is that a 

government shelter 

manager/lead is onsite. This 

may not be the case, which 

could cause some confusion.

Space State guidance is to provide 10-

square feet per person.

Red Cross typically uses 20-

square feet per person.

Facility selection Counties are encouraged to use 

schools. HI-EMA maintains the 

list of sights and has invested in 

hardening some identified 

facilities. Most will not 

withstand a major hurricane, and 

most have not had a full 

structural assessment.
84 National Council on Disability

Activity Local Government Role Red Cross Role

Household pets Not permitted in human 

shelters, Hurricane Evacuation 

Pet Shelters are operated by 

counties, possibly co-located at 

schools.

Service animals Permitted.

Dormitory space Dormitories are encouraged to 

be housed in small classrooms 

spread across multiple buildings 

rather than gymnasiums due to 

the perceived lack of structural 

integrity of long-span roofs.

This is expected to cause 

difficulty in site supervision, 

protection of equipment, 

communication among team 

members, access to restrooms, 

etc.

Red Cross workers are likely to 

be recruited to manage 

dormitory areas. This is a county 

decision.

Most shelters in NSS inventory 

and most Red Cross training 

assumes a gymnasium or large 

congregate areas will be the 

shelter.

Food Shelter residents are expected 

to bring a 14-day food supply 

with them. Up to 50% of the 

shelter population are expected 

to do so.

Salvation Army is the lead 

agency for feeding.

Red Cross is asked to provide 

food in many CONUS. 

evacuations. This is not 

expected here.
National Council on Disability 85

Activity Local Government Role Red Cross Role

Communications Extremely limited, expected to 

fail.

Amateur radio operators may be 

available to support Red Cross 

communication with staff.

Health and Medical Counties are encouraged to 

assign at least one healthcare 

staff member on site, with a 

basic first aid kit only.

Access and Functional Needs Lack of trained staff and backup 

power is expected.

Pre-disaster homeless Shelter population is expected 

to make up a significant 

percentage of the population. 

They are unlikely to have a 14-

day food supply and have high 

medical and mental health 

needs. No significant services 

are planned during evacuations.

Visitors and Tourists Appx. 15% of state population 

are visitors, up to 30% in some 

counties. Visitors are not 

expected to bring their 14-day 

food supply.

Reporting Counties are expected to report 

to State EOC when an 

evacuation shelter is open.

NSS usage at state and county 

levels is expected.
86 National Council on Disability

Activity Local Government Role Red Cross Role

Security Counties are responsible for 

managing security at shelters.

Post Impact Shelters

Activity Local Government Role Red Cross Role

Facility selection Schools are discouraged, and are 

likely to close, consolidating 

shelters to other public and 

private locations after the storm 

has past.

Sheltering operations Counties are expected to 

continue to be the operator 

supported by Red Cross.

Typically, Red Cross expects to 

open Red Cross operated 

shelters after impact. This does 

not appear to be in the plan.

Food Red Cross is expected to have 

an increased role, not currently 

defined.
National Council on Disability 87

Appendix 2

NCD Letter to CDC regarding NCD research into institutionalization of people with disabilities during and 

after disasters:

November 28, 2018

Robert R. Redfield, MD

Director

Centers for Disease Control and Prevention

1600 Clifton Rd.

Atlanta, GA 30329

Dear Dr. Redfield:

The National Council on Disability (NCD) entered into Cooperative Agreement # 18-03 on July 16, 2018 

with the Partnership for Inclusive Disaster Strategies (Partnership) —a national coalition of individuals and 

organizations whose mission is equal access and full inclusion for the whole community before, during 

and after disasters—to research and complete a report evaluating institutionalization of persons with 

disabilities during and after disasters. When complete, it will be provided to the President, Congress, and 

federal agencies potentially impacted by NCD’s recommendations.

I am writing as follow-up to the request by Partnership for the CDC to provide data and information 

regarding admissions from Federal medical stations to hospitals, nursing homes, assisted living facilities, 

skilled nursing facilities, rehabilitation facilities, hospices, and other long-term care facilities during and 

after the 2017 and 2018 disasters, beginning on August 25, 2017and continuing through the present 

time. Such data is needed to fulfill the responsibilities outlined in the cooperative agreement.

NCD is an independent federal agency, and is statutorily authorized 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, statutes, and regulations in meeting the needs of 
88 National Council on Disability

individuals with disabilities.” 29 U.S.C. § 781(a)(5). NCD is also required to “assess the extent to which 

such policies, programs, practices, and procedures facilitate or impede the promotion of the policies” 

that “guarantee equal opportunity for all individuals with disabilities ... and empower individuals with 

disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all 

aspects of society.” Id. § 781(a)(6) (referencing 29 U.S.C. § 780(a)(2)).

The cooperative agreement between NCD and Partnership states, in relevant part, that:

“This cooperative agreement is necessary to the discharge of NCD’s duty to review and evaluate on a 

continuing basis new and emerging disability policy issues affecting individuals with disabilities at the 

federal, state, and local levels, and in the private sector, including ... Access to personal assistance ... 

Access to health care, and policies that operate as disincentives for individuals to seek and retain 

employment.” 29 U.S.C. § 781(a)(10). Under this cooperative agreement, the Parties will produce a 

research product on the institutionalization of people with disabilities before during and after disasters. 

As required by the Federal Grant and Cooperative Agreement Act, “substantial involvement is expected 

between the executive agency and the ... Recipient when carrying out the activity contemplated in the 

agreement.” 31 U.S.C. § 6305(2).

Pursuant to the above, Partnership will need the requested data provided to develop NCD’s report in a 

timely manner to ensure CDC’s data and information is included in the report. I appreciate your prompt 

consideration and cooperation in assisting NCD with the data collection previously requested. You may 

provide the data directly to Amy Nicholas, Attorney Advisor, National Council on Disability at 

anicholas@NCD.gov. Ms. Nicholas can also be reached at 202-272-2008.

Sincerely,

Neil Romano

Chairman

cc: Partnership for Inclusive Disaster Strategies
National Council on Disability 89

Appendix 3

NCD Letter to CMS regarding NCD research into institutionalization of people with disabilities during and 

after disasters:

November 28, 2018

Seema Verma

Administrator

Centers for Medicare and Medicaid Services

7500 Security Blvd.

Baltimore, MD 21244

Dear Administrator Verma:

The National Council on Disability (NCD) entered into Cooperative Agreement # 18-03 on July 16, 2018 

with the Partnership for Inclusive Disaster Strategies (Partnership) —a national coalition of individuals and 

organizations whose mission is equal access and full inclusion for the whole community before, during 

and after disasters—to research and complete a report evaluating institutionalization of people with 

disabilities before, during, and after disasters. When complete, it will be provided to the President, 

Congress, and federal agencies potentially impacted by NCD’s recommendations.

I am writing as follow-up to the request by Partnership for CMS to provide data regarding disaster-related 

admissions to nursing homes, assisted living facilities, skilled nursing facilities and other long-term care 

facilities during and after the 2017 and 2018 disasters, beginning on August 25, 2017, and continuing 

through present time. Such data is needed to fulfill the responsibilities outlined in the cooperative 

agreement.

NCD is an independent federal agency, and is statutorily authorized 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, statutes, and regulations in meeting the needs of 
90 National Council on Disability

individuals with disabilities.” 29 U.S.C. § 781(a)(5). NCD is also required to “assess the extent to which 

such policies, programs, practices, and procedures facilitate or impede the promotion of the policies” 

that “guarantee equal opportunity for all individuals with disabilities ... and empower individuals with 

disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all 

aspects of society.” Id. § 781(a)(6) (referencing 29 U.S.C. § 780(a)(2)).

The cooperative agreement between NCD and Partnership states, in relevant part, that:

“This cooperative agreement is necessary to the discharge of NCD’s duty to “review and evaluate on a 

continuing basis new and emerging disability policy issues affecting individuals with disabilities at the 

federal, state, and local levels, and in the private sector, including ... Access to personal assistance ... 

Access to health care, and policies that operate as disincentives for individuals to seek and retain 

employment.” 29 U.S.C. § 781(a)(10). Under this cooperative agreement, the Parties will produce a 

research product on the institutionalization of people with disabilities before, during, and after disasters. 

As required by the Federal Grant and Cooperative Agreement Act, “substantial involvement is expected 

between the executive agency and the ... Recipient when carrying out the activity contemplated in the 

agreement.” 31 U.S.C. § 6305(2).

Pursuant to the above, Partnership will need the requested questions and data provided to develop 

NCD’s report in a timely manner to ensure Centers for Medicare and Medicaid Services data is recorded 

in the report. I appreciate your prompt consideration and cooperation in assisting NCD with the questions 

and data collection previously requested. You may provide the data directly to Amy Nicholas, Attorney 

Advisor, National Council on Disability. Ms. Nicholas can also be reached at (202) 272-2008.

Sincerely,

Neil Romano

Chairman

cc: Partnership for Inclusive Disaster Strategies
National Council on Disability 91

Appendix 4

NCD Letter to HHS regarding NCD research into institutionalization of people with disabilities during and 

after disasters:

November 28, 2018

Robert P. Kadlec, MD

Assistant Secretary for Preparedness and Response

U.S. Department of Health and Human Services

Office of the Assistant Secretary for Preparedness and Response

200 Independence Ave. SW.

Room 638G

Washington DC 20201

Dear Assistant Secretary Kadlec:

The National Council on Disability (NCD) entered into Cooperative Agreement # 18-03 on July 16, 2018, 

with the Partnership for Inclusive Disaster Strategies (Partnership) —a national coalition of individuals and 

organizations whose mission is equal access and full inclusion for the whole community before, during 

and after disasters—to research and complete a report evaluating institutionalization of people with 

disabilities during and after disasters. When complete, it will be provided to the President, Congress, and 

federal agencies potentially impacted by NCD’s recommendations.

I am writing as follow-up to the request by Partnership, for the Assistant Secretary for Preparedness and 

Response to provide a description of its role in assessing, placing, transporting, providing funding or 

reimbursement to grantees and contractors and any available data and information regarding admissions 

to hospitals, nursing homes, assisted living facilities, skilled nursing facilities, rehabilitation facilities, 

hospices, and other long-term care facilities during and after the 2017 and 2018 disasters, beginning on 

August 25, 2017, and continuing through present time. Such data is needed in order to fulfill the 

responsibilities outlined in the cooperative agreement.
92 National Council on Disability

NCD is an independent federal agency and is statutorily authorized 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, statutes, and regulations in meeting the needs of 

individuals with disabilities.” 29 U.S.C. § 781(a)(5). NCD is also required to “assess the extent to which 

such policies, programs, practices, and procedures facilitate or impede the promotion of the policies” 

that “guarantee equal opportunity for all individuals with disabilities ... and empower individuals with 

disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all 

aspects of society.” Id. § 781(a)(6) (referencing 29 U.S.C. § 780(a)(2)).

The cooperative agreement between NCD and Partnership states, in relevant part, that:

“This cooperative agreement is necessary to the discharge of NCD’s duty to review and evaluate on a 

continuing basis new and emerging disability policy issues affecting individuals with disabilities at the 

federal, state, and local levels, and in the private sector, including ... Access to personal assistance ... 

Access to health care, and policies that operate as disincentives for individuals to seek and retain 

employment.” 29 U.S.C. § 781(a)(10). Under this cooperative agreement, the Parties will produce a 

research product on the institutionalization of people with disabilities before during and after disasters. 

As required by the Federal Grant and Cooperative Agreement Act, “substantial involvement is expected 

between the executive agency and the ... Recipient when carrying out the activity contemplated in the 

agreement.” 31 U.S.C. § 6305(2).

Pursuant to the above, Partnership will need the requested questions and data provided to develop 

NCD’s report in a timely manner to ensure ASPR’s roles and responsibilities are accurately recorded in 

the report. I appreciate your prompt consideration and cooperation in assisting NCD with the data 

collection previously requested. You may provide the data directly to Amy Nicholas, Attorney Advisor, 

National Council on Disability at anicholas@NCD.gov. Ms. Nicholas can also be reached at (202) 272-

2008.

Sincerely,

Neil Romano

Chairman

cc: Partnership for Inclusive Disaster Strategies
National Council on Disability 93

Appendix 5 

NCD Letter to FEMA regarding NCD research into institutionalization of people with disabilities during 

and after disasters:

November 28, 2018

William B. Brock Long

Administrator

Federal Emergency Management Agency

500 C Street SW.

Washington DC 20024

Dear Administrator Long:

The National Council on Disability (NCD) entered into Cooperative Agreement # 18-03 on July 16, 2018, 

with the Partnership for Inclusive Disaster Strategies (Partnership) —a national coalition of individuals and 

organizations whose mission is equal access and full inclusion for the whole community before, during 

and after disasters—to research and complete a report evaluating the institutionalization of people with 

disabilities during and after disasters. When complete, it will be provided to the President, Congress, and 

federal agencies potentially impacted by NCD’s recommendations.

I am writing as follow-up to the request by Partnership for FEMA to provide a description of its role in 

providing funding and reimbursement to grantees and contractors and any available data and information 

regarding admissions to nursing homes, assisted living facilities, skilled nursing facilities and other longterm care facilities during and after the 2017 and 2018 disasters, with dates beginning August 25, 2017, 

through the present. Such data is needed in order to fulfill the responsibilities outlined in the cooperative 

agreement.

NCD is an independent federal agency and is statutorily authorized 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 
94 National Council on Disability

such policies, programs, practices, procedures, statutes, and regulations in meeting the needs of 

individuals with disabilities.” 29 U.S.C. § 781(a)(5). NCD is also required to “assess the extent to which 

such policies, programs, practices, and procedures facilitate or impede the promotion of the policies” 

that “guarantee equal opportunity for all individuals with disabilities ... and empower individuals with 

disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all 

aspects of society.” Id. § 781(a)(6) (referencing 29 U.S.C. § 780(a)(2)).

The cooperative agreement between NCD and Partnership states, in relevant part, that:

“This cooperative agreement is necessary to the discharge of NCD’s duty to “review and evaluate on a 

continuing basis new and emerging disability policy issues affecting individuals with disabilities at the 

federal, state, and local levels, and in the private sector, including ... Access to personal assistance ... 

Access to health care, and policies that operate as disincentives for individuals to seek and retain 

employment.” 29 U.S.C. § 781(a)(10). Under this cooperative agreement, the Parties will produce a 

research product on the institutionalization of people with disabilities before during and after disasters. 

As required by the Federal Grant and Cooperative Agreement Act, “substantial involvement is expected 

between the executive agency and the ... Recipient when carrying out the activity contemplated in the 

agreement.” 31 U.S.C. § 6305(2).

Pursuant to the above, Partnership will need the requested questions and data provided to develop 

NCD’s report in a timely manner to ensure FEMA’s roles and responsibilities are accurately recorded in 

the report. I appreciate your prompt consideration and cooperation in assisting NCD with the questions 

and data collection previously requested. You may provide the data directly to Amy Nicholas, Attorney 

Advisor, National Council on Disability at anicholas@NCD.gov. Ms. Nicholas can also be reached at (202)-

272-2008.

Sincerely,

Neil Romano

Chairman

cc: Partnership for Inclusive Disaster Strategies
National Council on Disability 95

Appendix 6

NCD Letter to ACL regarding NCD research into institutionalization of people with disabilities during and 

after disasters:

November 28, 2018

Lance Robertson

Administrator and Assistant Secretary for Aging

Administration for Community Living

330 Independence Ave. SW

Room 4760

Washington DC 20237

Dear Assistant Secretary Robertson:

The National Council on Disability (NCD) entered into Cooperative Agreement # 18-03 on July 16, 2018, 

with the Partnership for Inclusive Disaster Strategies (Partnership) —a national coalition of individuals and 

organizations whose mission is equal access and full inclusion for the whole community before, during 

and after disasters—to research and complete a report evaluating institutionalization of persons with 

disabilities during and after disasters. When complete, it will be provided to the President, Congress, and 

federal agencies potentially impacted by NCD’s recommendations.

I am writing as follow-up to the request by Partnership for the Administration for Community Living to 

provide a description of its role in assessing, placing, transporting, providing funding or reimbursement to 

grantees and contractors and any available data and information regarding admissions to hospital, nursing 

homes, assisted living facilities, skilled nursing facilities, rehabilitation facilities, hospices and other longterm care facilities during and after the 2017 and 2018 disasters, beginning on August 25, 2017, and 

continuing through present time. Such data is needed in order to fulfill the responsibilities outlined in the 

cooperative agreement.
96 National Council on Disability

NCD is an independent federal agency and is statutorily authorized 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, statutes, and regulations in meeting the needs of 

individuals with disabilities.” 29 U.S.C. § 781(a)(5). NCD is also required to “assess the extent to which 

such policies, programs, practices, and procedures facilitate or impede the promotion of the policies” 

that “guarantee equal opportunity for all individuals with disabilities ... and empower individuals with 

disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all 

aspects of society.” Id. § 781(a)(6) (referencing 29 U.S.C. § 780(a)(2)).

The cooperative agreement between NCD and Partnership states, in relevant part, that:

“This cooperative agreement is necessary to the discharge of NCD’s duty to review and evaluate on a 

continuing basis new and emerging disability policy issues affecting individuals with disabilities at the 

federal, state, and local levels, and in the private sector, including ... Access to personal assistance ... 

Access to health care, and policies that operate as disincentives for individuals to seek and retain 

employment.” 29 U.S.C. § 781(a)(10). Under this cooperative agreement, the Parties will produce a 

research product on the institutionalization of people with disabilities before during and after disasters. 

As required by the Federal Grant and Cooperative Agreement Act, “substantial involvement is expected 

between the executive agency and the ... Recipient when carrying out the activity contemplated in the 

agreement.” 31 U.S.C. § 6305(2).

Pursuant to the above, Partnership will need the requested questions and data provided to develop 

NCD’s report in a timely manner to ensure ACL’s role and responsibilities are accurately recorded in the 

report. I appreciate your prompt consideration and cooperation in assisting NCD with the data collection 

previously requested. You may provide the data directly to Amy Nicholas, Attorney Advisor, National 

Council on Disability at anicholas@NCD.gov. Ms. Nicholas can also be reached at (202) 272-2008.

Sincerely,

Neil Romano

Chairman

cc: Partnership for Inclusive Disaster Strategies
National Council on Disability 97

Appendix 7

DISASTER HOUSING RECOVERY COALITION

Top Priorities for Any Disaster Recovery Package

https://nlihc.org/sites/default/files/DHRC-Priorities_Disaster-Recovery-Package.pdf

Congress is preparing its next disaster relief package for communities in North Carolina and South 

Carolina that were impacted by Hurricane Florence. At the same time, communities in Puerto Rico, 

Texas, Florida, and California are still recovering from the 2017 disasters. The Disaster Housing Recovery 

Coalition of 800 local, state, and national organizations urges Congress to ensure that federal disaster 

recovery resources reach all impacted households, including those with the lowest incomes that are 

often the hardest-hit by disasters and have the fewest resources to recover afterward. Below are our top 

priorities for Congress to include in any disaster recovery package: 

PROVIDE ROBUST DISASTER RECOVERY FUNDING AND MEANINGFUL OPPORTUNITIES FOR 

PUBLIC INPUT. 

Priority #1: Provide robust resources to allow communities devastated by the recent disasters to fully 

recover, including funding through HUD’s Community Development Block Grant Disaster Recovery 

(CDBGDR) program and resources to support additional full-time disaster recovery staff at HUD. 

Congress should also ensure meaningful opportunities for public input by requiring a 30-day comment 

period on state CDBGDR action plans as well as direct grantees to establish an ongoing process for 

public input as rebuilding programs and projects progress to ensure community needs are being met. 

PROVIDE HOUSING ASSISTANCE FOR PEOPLE WITH THE GREATEST NEEDS. 

One of the top priorities after a disaster is ensuring that survivors have a stable, affordable place to call 

home while they get back on their feet. Under the Disaster Housing Assistance Program (DHAP), 

displaced families receive the longer-term direct rental assistance and wrap-around case management 

services needed to find permanent housing solutions, secure employment, and connect to public 

benefits. DHAP was created after hard-won lessons from Hurricane Katrina, and it has been used 
98 National Council on Disability

successfully in major storms since. DHAP has been upheld as a best practice by past Republican and 

Democratic administrations. DHAP was designed to help low-income survivors who face significant 

barriers to accessing FEMA’s Transitional Shelter Assistance (TSA) motel program and who need longerterm housing stability to fully recover. TSA is not well-suited for low income survivors because hotels 

often charge daily “resort” fees on top of FEMA reimbursements, require security deposits, or require 

that displaced households have credit cards—all of which are barriers to low income households who 

have already depleted any savings that they may have had and who are often unbanked or underbanked. 

TSA also relies on arbitrary, short-term deadlines—often giving survivors only a few days or hours’ 

notice—and creates burdensome hoops that families must jump through to use the program. Without 

DHAP, displaced, low-income families often have little choice but to double or triple up with other lowincome families, return to uninhabitable homes, or pay more than half of their limited incomes on rent, 

making it harder to meet their other basic needs. Survivors without stable, affordable homes face a 

higher risk of evictions and, in worst cases, homelessness. There are numerous accounts of individuals 

unable to access TSA after the 2017 disasters who set up “tent cities” or who later needed emergency 

hospital care after returning to mold-infested homes. Families were pushed into homelessness because 

they had no place to go. Despite the clear need, FEMA has refused to activate DHAP, rejecting requests 

by Governors, dozens of members of Congress, survivors, and advocates. For more information, see 

NLIHC’s DHAP factsheet and a comparison of DHAP and alternative programs. 

TOP PRIORITIES FOR ANY DISASTER RECOVERY PACKAGE 

Priority #2: Direct FEMA to activate DHAP, using legislative language from S. 2996, the “Housing Victims 

of Major Disasters Act of 2018,” introduced by Senator Elizabeth Warren (D-MA), and S.2880, the 

“Disaster Housing Assistance Act,” introduced by Senator Bill Nelson. Alternatively, Congress should 

directly appropriate DHAP funds. 

REQUIRE ALL DAMAGED OR DESTROYED FEDERALLY SUBSIDIZED AFFORDABLE RENTAL HOMES 

TO BE REPLACED ON A ONE-FOR-ONE BASIS. 

America’s rental housing crisis directly impacts all states and congressional districts. Even before a 

disaster hits, most of the lowest-income families living in these communities pay more than half of their 

limited incomes on rent, leaving few resources to help meet their other basic needs, including food, 

childcare, healthcare, and transportation. After past disasters, affordable housing stock is often lost and 

never rebuilt, exacerbating the affordable rental housing crisis in these communities and displacing lowincome families. Developments should be rebuilt in both high-opportunity communities outside of the 

floodplain with access to good schools, jobs, healthcare, and transit, and in distressed communities as 

part of a comprehensive revitalization plan. 
National Council on Disability 99

Priority #3: Require states receiving CDBGDR funding ensure that all damaged or destroyed federally 

subsidized affordable rental homes are replaced on a one-for-one basis. Congress should use legislative 

language from H.R. 4557, the “Reforming Disaster Recovery Act,” introduced by Representative Ann 

Wagner (R-MO). 

Priority #4: Provide the deeply targeted resources that states need to replace all damaged or destroyed 

federally subsidized affordable rental homes, including: 

 National Housing Trust Fund, a new federal resource designed specifically address the shortage of 

affordable housing for people with the greatest needs; 

 HOME Investment Partnerships Program; 

 Low-Income Housing Tax Credits, along with broadly supported modifications to increase efficiency and 

flexibility and to expand the program’s reach—including to the lowest income households—as included 

in the Affordable Housing Credit Improvement Act; 

 New Markets Tax Credits; and

 Technical Assistance and Capacity Building.

ENSURE THAT FEDERAL DISASTER RECOVERY DOLLARS ARE USED EQUITABLY TO ADDRESS 

HOUSING AND INFRASTRUCTURE NEEDS.

Congress relies on FEMA and HUD’s unmet needs assessment to determine the amount of disaster 

recovery funding needed to rebuild damaged and destroyed homes and infrastructure. After past 

disasters, however, states have used federal disaster recovery resources slated for housing recovery for 

other purposes. Congress has an important role to play to ensure that federal dollars are spent effectively 

and for the specific purpose for which they were allocated. 

Priority #5: Require states receiving federal disaster recovery funding to allocate CDBGDR resources 

equitably to address their housing and infrastructure needs, according to FEMA and HUD’s assessments 

and other data. Congress should use legislative language from H.R. 4557, the “Reforming Disaster 

Recovery Act,” introduced by Representative Ann Wagner (R-MO). According to news reports, FEMA 

has denied Individual Assistance to an estimated 60 percent of Hurricane Maria survivors—twice the rate 

for Hurricane Harvey survivors—due largely to title issues prevalent in Puerto Rico that make it difficult 

for families to prove ownership of their homes. To overcome this challenge, DHRC members worked 

with FEMA to create an alternative form that disaster survivors could use to prove ownership. While 

FEMA has accepted this form, there are widespread problems that raise serious due process concerns—

the forms are not available at Disaster Recovery Centers (DRCs) or on FEMA’s website or social media, 
100 National Council on Disability

and the form was not attached to the agency’s press release announcing that the form was available. 

Unaware of the new form, staff at DRCs have turned away survivors. Instead of making the form 

available, FEMA is referring survivors to 3rd party legal aid organizations. 

Priority #6: Direct FEMA to notify all Hurricane Maria survivors—including those who were denied 

assistance because of title issues—and to share with them a copy of the new form and information 

about how they can appeal their cases. 

ENSURE THAT FEDERAL DISASTER RECOVERY DOLLARS ARE USED EQUITABLY TO ADDRESS THE 

NEEDS OF HOMEOWNERS, RENTERS, AND PEOPLE EXPERIENCING HOMELESSNESS. 

Under current law, states are not required to allocate federal disaster recovery funding to equitably 

address the needs of homeowners, renters, and people experiencing homelessness prior to the disaster, 

as identified in FEMA and HUD’s assessments and other data. As a result, after past disasters, states 

have diverted resources away from people with the greatest needs—including low-income renters and 

people experiencing homelessness—to relatively higher-income homeowners. In a 2010 report, the GAO 

recommended that Congress provide more direction to states in how to allocate funds from the 

CDBGDR program. The report concludes, “Without specific direction on how to better target disasterrelated CDBGDR funds for the redevelopment of homeowner and rental units after future disasters, 

states’ allocations of assistance to homeowners and renters may again result in significant differences in 

the level of assistance provided.” 

Priority #7: Direct HUD to implement the GAO’s recommendation to provide states with specific 

direction on how to allocate disaster recovery dollars equitably between homeowners, renters, and 

people experiencing homelessness prior to the disaster, according to FEMA and HUD’s unmet needs 

assessment and other data. Congress should use legislative language from H.R. 4557, the “Reforming 

Disaster Recovery Act,” introduced by Representative Ann Wagner (R-MO). FEMA has interpreted 

current law to deny assistance to people experiencing homelessness prior to the disaster, despite their 

exceptional needs. These individuals should have access to the same emergency shelter and disaster 

relief assistance as those who were renting their homes prior to the disaster. 

Priority #8: Enact clarifying legislation to ensure that people experiencing homelessness prior to the 

disaster have access to the same emergency shelter and disaster relief assistance as renters, including 

rental assistance. Congress should also provide targeted resources—such as Continuum of Care 

grants—to help serve people who were experiencing homelessness prior to the disaster, whose needs 

are frequently overlooked. 
National Council on Disability 101

SUPPORT INNOVATIVE, COST-EFFECTIVE HOUSING SOLUTIONS. 

RAPIDO was developed after Hurricane Dolly to provide displaced households with cost-effective, 

temporary-to-permanent housing solutions. Under RAPIDO, families have access to a core, modular 

home—assembled on-site—where they can live during the lengthy recovery process. During this time, 

the core home can be expanded to meet the long-term needs of the family. RAPIDO provides both 

immediate shelter and the foundation for a permanent home. It is an innovative solution that costs less 

than current federal practices of providing temporary shelter and then rebuilding a separate, permanent 

structure later. 

Priority #9: Include legislative language to allow states to use federal recovery resources to create a 

RAPIDO demonstration program. 

PROMOTE CONTRACTING AND JOBS FOR LOW-INCOME DISASTER SURVIVORS AND BUSINESSES. 

To help stimulate local economies and ensure that low-income communities are built back stronger, 

Congress should ensure job training and employment opportunities for low-income residents, as well as 

contract opportunities for small businesses in connection with projects and activities in their 

neighborhoods. Section 3 is also a tool to overcome likely labor shortages after a disaster. 

Priority #10: Direct HUD to use Section 3 to promote job training and employment opportunities for lowincome residents in the recovery process. Congress should revise and improve Section 3 to make the 

program more impactful. 

PREPARE FOR THE NEXT DISASTER. 

Rebuilding homes and infrastructure to be better prepared to withstand future disasters is plain common 

sense. While we cannot prevent disasters, we can decrease the risk that these disasters pose. Through 

planning and mitigation, communities are better able to maintain vital functions during an emergency and 

recover more efficiently. Congress provided mitigation funds to help communities recover from the 2017 

disasters. 

Priority #11: Provide funds specifically targeted to address mitigation strategies and ensure that all 

rebuilding efforts meet mandatory mitigation standards. 

AUTHORIZE LONG-TERM DISASTER RECOVERY LEGISLATION. 
102 National Council on Disability

DHRC supports H.R. 4557, the “Reforming Disaster Recovery Act” introduced by Rep. Ann Wagner (RMO). The bill permanently authorizes the Federal Government’s primary long-term disaster rebuilding 

program, the CDBGDR program, which provides states and communities with the flexible resources 

needed to rebuild affordable housing and infrastructure after a disaster. The bill also establishes 

important safeguards and tools to help ensure that federal disaster recovery and rebuilding efforts reach 

all impacted households, including those with the lowest incomes who are often the hardest-hit by 

disasters and have the fewest resources to recover. 

Priority #12: Enact H.R. 4557, the “Reforming Disaster Recovery Act,” introduced by Representative Ann 

Wagner (R-MO) to permanently authorize and reform CDBGDR.
National Council on Disability 103

Appendix 8

The Storm after the Storm: Disaster, Displacement and Disability Following Hurricane Florence

February 5, 2019: The Storm after the Storm, issued by Disability Rights North Carolina, provides strong 

evidence that federal, state and local emergency management officials must act to ensure the well-being 

of people with disabilities during natural disasters. Analyzing the response to Hurricane Florence, the 

report shows how public officials must do more to include people with disabilities and their advocates in 

planning for future emergencies to ensure their safety.
104 National Council on Disability
National Council on Disability 105

Endnotes

1 Lakin, K. C., S. Larson, P. Salmi, and A. Webster. (2010). Residential Services for Persons with Developmental 

Disabilities: Status and Trends through 2009. Research and Training Center on Community Living. Institute on 

Community Integration/UCEDD, College of Education and Human Development, University of Minnesota. 

Accessed July 21, 2011. http://rtc.umn.edu/docs/risp2009.pdf (April 18, 2019).

2 National Council on Disability, “The Needs of People with Disabilities with Psychiatric Disabilities During and 

After Hurricanes Katrina and Rita: Position Paper and Recommendations” 2014 The Needs of People with 

Disabilities with Psychiatric Disabilities During and After Hurricanes Katrina and Rita.

3 2017 Hurricane Season FEMA After-Action Report July 12 ,2018, p.1.

4 U.S. Department of Health and Human Services, Centers for Disease Control and Prevention. “Disability 

impacts all of us.” https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html.

5 Marcie Roth, Kailes June, and Melissa Marshall. Partnership for Inclusive Disaster Strategies. “Getting It 

Wrong: An Indictment with a Blueprint for Getting It Right Disability Rights, Obligations and Responsibilities 

Before, During and After Disasters.” May, 2018. 

http://www.disasterstrategies.org/index.php/news/partnership-releases-2017-2018-after-action-report.

6 US Department of Health and Human Services, Centers For Disease Control and Prevention. "CDC: 1 in 4 US 

adults live with a disability." (April 18, 2019).

7 Department of Homeland Security Civil Rights Evaluation Tool OMB Control No. 1601-0024.

8 Marcie Roth, Kailes June, and Melissa Marshall. Partnership for Inclusive Disaster Strategies. “Getting It 

Wrong: An Indictment with a Blueprint for Getting It Right Disability Rights, Obligations and Responsibilities 

Before, During and After Disasters.” May, 2018. 

http://www.disasterstrategies.org/index.php/news/partnership-releases-2017-2018-after-action-report.

9 CNN News. 2017. “Harvey aftermath: Houston 'open for business'; other cities suffering.” August 31, 2017 

https://www.cnn.com/2017/08/31/us/harvey-houston-texas-flood/index.html.

10 PBJ Daily Nurse Staffing CY 2017 Q2: https://data.cms.gov/Special-Programs-Initiatives-Long-Term-CareFacili/PBJ-Daily-Nurse-Staffing-CY-2017-Q2/utrm-5phx.

11 PBJ Daily Nurse Staffing CY 2017 Q3: https://data.cms.gov/Special-Programs-Initiatives-Long-Term-CareFacili/PBJ-Daily-Nurse-Staffing-CY-2017-Q3/bpnu-uej3.

12 PBJ Daily Nurse Staffing CY 2017 Q4: https://data.cms.gov/Special-Programs-Initiatives-Long-Term-CareFacili/PBJ-Daily-Nurse-Staffing-CY-2017-Q4/4z4g-bf8w.

13 PBJ Daily Nurse Staffing CY 2017 Q2: https://data.cms.gov/Special-Programs-Initiatives-Long-Term-CareFacili/PBJ-Daily-Nurse-Staffing-CY-2017-Q2/utrm-5phx.

14 PBJ Daily Nurse Staffing CY 2017 Q3: https://data.cms.gov/Special-Programs-Initiatives-Long-Term-CareFacili/PBJ-Daily-Nurse-Staffing-CY-2017-Q3/bpnu-uej3.

15 PBJ Daily Nurse Staffing CY 2017 Q4: https://data.cms.gov/Special-Programs-Initiatives-Long-Term-CareFacili/PBJ-Daily-Nurse-Staffing-CY-2017-Q4/4z4g-bf8w.

16 Ibid.

17 Eschenbacher, H.J. (2018). Change in ICF/IID residents in Louisiana 2002 to 2009 by facility size [customized 

analysis]. Minneapolis: University of Minnesota, Residential Information Systems Project. See the chart gallery 

at RISP.UMN.EDU for more information.

18 Ibid.

19 Ibid.

20 Ibid.

21 Ibid.

22 Ibid.

 
106 National Council on Disability

23 Marcie Roth, Kailes June, and Melissa Marshall. Partnership for Inclusive Disaster Strategies. “Getting It 

Wrong: An Indictment with a Blueprint for Getting It Right Disability Rights, Obligations and Responsibilities 

Before, During and After Disasters.” May, 2018. 

http://www.disasterstrategies.org/index.php/news/partnership-releases-2017-2018-after-action-report.

24 U.S. Department of Homeland Security. “Civil Rights Evaluation Tool.” 

https://www.dhs.gov/sites/default/files/publications/dhs-civil-rights-evaluation-tool.pdf.

25 U.S. Senate. “Sheltering in Danger: How Poor Emergency Planning and Response Put Nursing Home 

Residents at Risk During Hurricanes Harvey and Irma.” November, 2018. 

https://www.finance.senate.gov/imo/media/doc/Sheltering%20in%20Danger%20Report%20(2%20Nov%2020

18).pdf.

26 Ewa Borowiak, and Tomasz Kostka. 2004. Predictors of Quality of Life in Older People Living at Home and 

Institutions. Aging clinical and experimental research. 16. 212-20. 10.1007/BF03327386.

27 S.H. Al-Mashoor, S.A. Hashim, and A.W. Nikmat. 2015. “Quality of Life in People with Cognitive Impairment: 

Nursing Home Versus Home Care.” International Psychogeriatrics. 2015 (27: 815-824).

28 B. Baca, D. Chandran, R. Chapin, S. Leedal, K.R. Macmillan, P. Oslund, R. Rachlin, and M. Zimmerman. 2007. 

“The Community Tenure Study: Community Status of CARE Assessment Customers 60 Months After 

Diversion.” https://crado.ku.edu/projects/dc-tenure/nursingfacility-hcbs.

29 J.Robinson, et al. 2015. “Connecticut Money Follows the Person Yields Positive Results for Transitioning 

People with Disabilities out of Institutions.” Health Affairs, vol 34 No 10. 

https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2015.0244.

30 U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services.“Money Follows 

the Person.” https://www.medicaid.gov/medicaid/ltss/money-follows-the-person/index.html.

31 Erika Pesantes. 2017. "14th Person From Hollywood Nursing Home Dies, Police Say." Sun Sentinel. October 9, 

2017. https://www.sun-sentinel.com/news/hollywood-nursing-home-hurricane-deaths/fl-reg-13-nursing-homedeath-20171009-story.html.

32 Jaycey Fortin. 2107. “Behind the Photo of the Older Women in Waist High Water in Texas.” New York Times. 

August 28,2017. https://www.nytimes.com/2017/08/28/us/nursing-home-houston-texas.html.

33 U.S. Senate. 2018. “Sheltering in Danger: How Poor Emergency Planning and Response Put Nursing Home 

Residents at Risk During Hurricanes Harvey and Irma.” p. 78.

34 Ibid. p.70.

35 Ibid. p.5.

36 Ibid. p.2.

37 Tyler Pager, Campbell Robertson, and Chris Dixon. 2018. “They Were Seeking Mental Health Care. Instead 

They Drowned in a Sheriff’s Van” New York Times. Sept. 19, 2018. 

https://www.nytimes.com/2018/09/19/us/women-drown-van-south-carolina-floods.html.

38 Tyler Pager, Campbell Robertson, and Chris Dixon. 2018. “They Were Seeking Mental Health Care. Instead 

They Drowned in a Sheriff’s Van” New York Times. Sept. 19, 2018. 

https://www.nytimes.com/2018/09/19/us/women-drown-van-south-carolina-floods.html.

39 Ibid.

40 U.S. Department of Justice, “ ADA Best Practices Tool Kit for State and Local Governments,” 

https://www.ada.gov/pcatoolkit/chap7shelterprog.htm#6.

41 Ibid.

42 U.S. Department of Justice, “ ADA Best Practices Tool Kit for State and Local Governments,” 

https://www.ada.gov/pcatoolkit/chap7emergencymgmt.htm.

43 U.S. Department of Justice, “ADA Tool Kit,” Chapter 7 Addendum 2, 

https://www.ada.gov/pcatoolkit/chap7shelterprog.htm.

44 U.S. Department of Homeland Security Office for Civil Rights and Civil Liberties, FEMA Office of Equal Rights, 

and FEMA Office of Disability Integration & Coordination. “Notice from the U.S. Department of Homeland 

Security Office for Civil Rights and Civil Liberties, FEMA Office of Equal Rights, and FEMA Office of Disability 

Integration & Coordination.” https://www.dhs.gov/sites/default/files/publications/notice-nondiscriminationduring-disasters.pdf.
National Council on Disability 107

45 U.S. Department of Justice, “ ADA Best Practices Tool Kit for State and Local Governments,” 

https://www.ada.gov/pcatoolkit/chap7shelterprog.htm#6.

46 U.S. Department of Homeland Security, Federal Emergency Management Agency (FEMA). 2010. “Guidance on 

Planning for Integration of Functional Needs Support Services in General Population Shelters.” November 

2010. https://www.fema.gov/media-library-data/20130726-1831-25045-7316/fnss_guidance.pdf.

47 U.S. Department of Homeland Security, Federal Emergency Management Agency (FEMA). 2010. 

“Accommodating Individuals with Disabilities in the Provision of Disaster Mass Care, Housing, and Human 

Services.” May 2010. https://www.fema.gov/media-library-data/20130726-1617-20490-

6430/section689referenceguide.pdf.

48 Department of Health and Human Services. 2018. “OCR Issues Guidance to Help Ensure Equal Access to 

Emergency Services and the Appropriate Sharing of Medical Information During Hurricane Florence.” 

September 13, 2018.

49 U.S. Department of Health and Human Services, “Working with Older Adults and People with Disabilities: Tips 

for Treatment and Discharge Planning.” Last reviewed December 2017.

https://www.phe.gov/Preparedness/planning/abc/Pages/elderly-disabled.aspx.

50 U.S. Department of Health and Human Services, “Public Health Emergency Public Health and Medical 

Emergency Support for a Nation Prepared.” https://www.phe.gov/about/sns/Pages/products.aspx.

51 US Department of Health and Human Services, Centers for Medicare and Medicaid Services. “Additional 

Emergency and Disaster-Related Policies and Procedures That May Be Implemented Only With a § 1135 

Waiver.” September 14, 2018. https://www.cms.gov/About-CMS/AgencyInformation/Emergency/Downloads/MedicareFFS-EmergencyQsAs1135Waiver.pdf.

52 U.S. Department of Health and Human Services. 2018. “OCR Issues Guidance to Help Ensure Equal Access to 

Emergency Services and the Appropriate Sharing of Medical Information During Hurricane Florence.”

53 U.S. Department of Health and Human Services, Center for Medicare and Medicaid Services, “Durable Medical 

Equipment, Prosthetics, Orthotics, and Supplies for Medicare Beneficiaries Impacted by an Emergency or 

Disaster.”

54 U.S. Department of Justice, “ADA Tool Kit,” Chapter 7 Addendum 2. 

https://www.ada.gov/pcatoolkit/chap7shelterprog.htm.

55 U.S. Department of Health and Human Services. “Emergency Support Function #8 – Public Health and Medical 

Services Annex”. June 2016. https://www.fema.gov/media-library-data/1470149644671-

642ccad05d19449d2d13b1b0952328ed/ESF_8_Public_Health_Medical_20160705_508.pdf.

56 US Department of Homeland Security National Response Framework 3rd Edition June 2016. 

https://www.fema.gov/media-library-data/1466014682982-

9bcf8245ba4c60c120aa915abe74e15d/National_Response_Framework3rd.pdf page 38.

57 Roth, Kailes, Marshall, “Getting It Wrong: An Indictment with a Blueprint for Getting It Right Disability Rights, 

Obligations and Responsibilities Before, During and After Disasters.” Appendix G.

58 National Mass Care Council. 2017. “Multi-Agency Sheltering/Sheltering Support Plan Template: Tab A to 

Appendix F Transition to Alternate Sheltering and Housing Solutions Considerations.” updated March 2017. 

http://nationalmasscarestrategy.org/wp-content/uploads/2018/03/Appendix-F-Transition-to-Alternate-ShelteringFinal-Version.pdf.

59 U.S. Department of Housing and Urban Development, “Section 504: Frequently Asked Questions.” 

https://www.hud.gov/program_offices/fair_housing_equal_opp/disabilities/sect504faq.

60 Ibid.

61 Rose Hoban. 2018. “Inside and Emergency Medical Hurricane Shelter” North Carolina health News.” 

September 21, 2018. https://www.northcarolinahealthnews.org/2018/09/21/inside-an-emergency-hurricanemedical-shelter/.

62 U.S Department of Justice, ADA Tool Kit. Chapter 7, Addendum 2. 

https://www.ada.gov/pcatoolkit/chap7shelterprog.htm.

63 North Carolina Emergency Management. “Special Medical Needs Shelters: A Preparedness Guide.” 

https://www.scdhec.gov/sites/default/files/Library/ML-025588.pdf.
108 National Council on Disability

64 U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services. “Centers for 

Medicare and Medicaid Services Emergency Preparedness Rule.” https://www.cms.gov/medicare/providerenrollment-and-certification/surveycertemergprep/emergency-prep-rule.html.

65 U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services. “Centers for 

Medicare and Medicaid Services Emergency Preparedness Rule.” https://www.cms.gov/medicare/providerenrollment-and-certification/surveycertemergprep/emergency-prep-rule.html.

66 Burch and Joyner. Unspeakable: The Story of Junius Wilson (Caravan Book, 2007).

67 U.S. Department of Health and Human Services, Office of the Assistant Secretary for Preparedness and 

Response, Public Health Emergency, Public Health and Emergency Support for a Nation Prepared. 

https://www.phe.gov/Preparedness/support/medical assistance/Pages/default.aspx.

68 Caley, Sylvia B. “The Olmstead Decision: The Road to Dignity and Freedom.” Georgia State University Law 

Review Volume 26 Issue 3 Spring 2010 

https://readingroom.law.gsu.edu/cgi/viewcontent.cgi?article=2407&context=gsulr.

69 U.S. Department of Homeland Security, Federal Emergency Management Agency (FEMA), “FEMA P-361 Safe 

Rooms for Tornadoes and Hurricanes: Guidance for Community and Residential Safe Rooms” 

https://www.fema.gov/media-library/assets/documents/3140.

70 Department of Homeland Security. “Civil Rights Evaluation Tool, OMB Control No. 1601-0024.” 

https://www.dhs.gov/sites/default/files/publications/dhs-civil-rights-evaluation-tool.pdf.

71 U.S. Department of Justice, “ ADA Best Practices Tool Kit for State and Local Governments,” 

https://www.ada.gov/pcatoolkit/chap7emergencymgmt.htm.

72 Josh Shaffer, Martha Quillin. 2018. “Evacuated and evicted, many of Hurricane Florence’s victims have 

nowhere to go.” The News & Observer. October 07, 2018. Updated November 14, 2018.

73 National Low Income Housing Coalition. “Disaster Recovery Housing.” https://nlihc.org/explore-issues/projectscampaigns/disaster-housing-recovery.

74 Lynn Hatter Mar 20, 2019, WJCT Public Media “ Bay Schools Superintendent Talks Homelessness, Mental 

Health Struggles Of Students” https://news.wjct.org/post/bay-schools-superintendent-talks-homelessnessmental-health-struggles-students.