Demand FEMA Save Disabled Lives in Emergencies

People in congregate facilities (nursing homes, group homes, mental health facilities, rehabilitation facilities, carceral facilities, etc.) have faced the highest rates of COVID-19 infection and death – by far. Though we are hopeful that vaccines are putting the worst behind us, the pandemic is far from over. We want strong, enforceable policies for current and future emergencies.

Considering the obvious disaster, some well-publicized cover-ups, and a long history of facility owners putting profits before healthcare, we need the Federal Emergency Management Agency (FEMA) to step up and fulfill their mission – “Helping People Before, During and After Disasters”. Our public health and emergency management agencies have been shockingly slow to take actions that would save and sustain the lives of people with disabilities in this public health emergency.

For almost two years, many local groups have tried to organize diversions and emergency relocations of people with disabilities from nursing homes and other congregate facilities. They attempted to distribute personal protective equipment, provide emergency personal assistance services, educate the community, provide transportation to and host vaccination sites, support home vaccination and testing, provide technical assistance for physical, programmatic and effective communication access, and provide other emergency protective measures. Unfortunately, due to a lack of FEMA support, unwillingness to collaborate with disability leaders, and failure to enforce federal law in the use of disaster funds, the needs of many, many people were not met.

FEMA provided little support and created a maddening runaround for advocates seeking critical life-saving and life-sustaining aid. Meanwhile, even now, people are still being left to die in the most COVID-deadly places in the country.

After many years of steady advocacy, FEMA still has not recognized that Centers for Independent Living (CILs) and similar consumer-led organizations have critical roles to play in meeting the disaster needs of people with disabilities and disaster-impacted communities.

FEMA administrator Deanne Criswell has opened the door to enabling Centers for Independent Living (CILs) and similar groups to access FEMA resources to save lives in disasters. But to make this policy change real and effective, there are several steps needed from FEMA.

  1. Immediately provide guidance and training to State, Local, Tribal, and Territorial entities (SLTTs) regarding the implementation of “Addendum: Delivering Personal Assistance Services in Congregate and Non-Congregate Sheltering“.
  2. Recognize disaster-impacted CILs in the Public Assistance Program and Policy Guide as Private Non-Profits, eligible for reimbursement.
  3. Clarify the process for disability organizations to be funded, and reimbursed by SLTTs in the Public Assistance Category B Emergency Protective Measures reimbursement process, and all other disaster funding processes with clearly defined roles, steps and responsibilities.
  4. Provide grant funding guidance and technical assistance for SLTTs to support disability-led organizations to prepare for emergencies, respond to and recover from disasters, and mitigate hazards in support of all SLTT obligations under the Stafford Act, Rehabilitation Act, Americans with Disabilities Act, and all other applicable laws and regulations.
  5. Center the focus of FEMA’s work on improving outcomes for the people most disproportionately impacted by disasters. Improving outcomes for the people most disproportionately impacted will optimize limited resources for the whole disaster-impacted community.

Use this form to send your letter to administrator Criswell, urging her to take the next steps.  

You can personalize the standard letter.


Organized by the 'SILVER' group (Saving Institutional Lives Via Emergency Relocation), and endorsed by:

APRIL - Association of Programs for Rural Independent Living

Institutional Rescue and Recovery Coalition (IRRC)

Roads to Freedom Center for Independent Living

Partnership for Inclusive Disaster Strategies

World Institute on Disability

Progress Center for Independent Living

Champaign County Health Care Consumers

Champaign County Christian Health Center

and other consumer-led organizations