My mother tested positive for COVID-19 on December 19th. On Christmas Eve, after one unsuccessful trip to the emergency room, we called 911, an ambulance came, and she was admitted. While she was described by her nurses as the healthiest person in the ICU, she did not recover and died on January 9th.
Given the surges in COVID infection and death rates at the time, we were very fortunate to be able to give her a full burial. We had the support of friends, family, and her church. My mother—not one to leave things to chance—had made many of the needed arrangements and given us sufficient instructions to pull everything together in four days. She never cared for wakes, so COVID worked to our advantage on that front. Funeral ceremonies, as I learned, are a critical rite of passage when grieving.
I was pleasantly surprised when the American Rescue Plan Act included reimbursement for funeral expenses. It has the potential to relieve a great burden from many people and allow others who hadn’t been able to bury their loved ones to take that step. As a design professional, I was also intrigued to see how the government would set up and deliver the program—to be on the other side of the human-centered design discussion. Having now completed the application, spoken with the FEMA help desk to correct errors in the file, created accounts on disasterassistance.gov, and uploaded my documentation, my frustration with the process has turned into questions.
I’ve worked with government agencies for most of my career, and always start from a place of good intentions. I know that the women and men who support the federal government—HHS and FEMA, in particular—are doing everything they can to ease the burden and anguish we are facing. To attempt to get to the root cause of my frustrations, I engaged my colleagues Meghan Treber, Kelly Wilson, and Marko Bourne. I hope you find their insights as helpful as I did.
Q: Why is it FEMA and not another agency (such as HHS or HUD) that administers assistance benefits?
Kelly: At its core, it’s because Congress authorized FEMA to provide funeral assistance following a presidentially declared disaster as part of the larger Individual Assistance (IA) Program. FEMA is designed to assist in times of unplanned circumstances with disasters; they are not meant to be a provider to make someone “whole” again. The program operates on the assumption that applicants, whether individuals for IA or public entities for Public Assistance (PA), have planned and prepared to cover themselves in a time of loss. FEMA is there to assist communities and individuals in getting back on their feet only after they have exhausted their first lines of reimbursement. What is good about the program in general is that it can be used as a catalyst to receive additional and filler assistance such as emergency loans, emergency food assistance, disaster unemployment benefits, voluntary agency aid, case management, etc.
In regard to COVID-19, there could be more attention on timeframe allowances as the concerns and financial strains for individuals continues a year into this pandemic. It would be beneficial to perform studies on how government assistance programs have performed and determine how to adapt programs to better suit the needs of applicants during a pandemic. Agencies should spend time studying current programs and their effectiveness in order to develop better future solutions.
Meghan: A key underlying factor is that FEMA had not been planning on being a player in an infectious disease outbreak when they were thrust into the COVID-19 response. There are plenty of catastrophic events with high victim/death counts that FEMA has anticipated and planned for, including the 2009 H1N1 pandemic. FEMA, HHS, previous administrations, and Congress have all operated on the assumption that a Stafford Act Declaration, which makes IA available, would never be made for a pandemic due to legal interpretations of allowable disasters. During the H1N1 pandemic in 2009, President Obama signed a National Emergencies Act declaration and not a Stafford declaration due to this interpretation. Therefore, FEMA didn’t have the policies, plans, or the infrastructure in place to support PA or IA for this kind of event.
Q: FEMA call centers were overwhelmed for days with demand; why is it phone only and not web or text?
Marko: In the last 5-7 years, the majority of IA applications have typically been submitted using FEMA’s web-based tools and apps. These applications are designed to follow a specific and prescriptive workflow with component parts that cannot be easily decoupled. The COVID burial benefit follows parts but not all of this flow. To reprogram the flow within the digital toolkit could take six months to a year, which was not an acceptable length of time given the urgency to get support into the hands of citizens in need. As a work around, a phone only system allows for operators to manually override parts of the flow and complete the initial application intake.
Q: So many parts of the experience don’t make sense from a design perspective. For example, follow up communications are an either/or for email and mail. Why aren’t there several places for message tailoring, personalization, and the like?
Kelly: I’m glad to see that FEMA expanded on what they provide to individual applicants due to this pandemic disaster, and now allow reimbursement for funeral expenses—especially considering this is a normal reimbursement opportunity under the IA program for a natural disaster. I presume the issues one encounters with registration are the same that natural disaster applicants experience, which isn’t always easy to navigate even under normal circumstances. There is always room for improvement regarding the process to determine eligibility and benefit amount.
This is also true for the automation portion of the IA processing database. Too often there are triggers in the program that either initiate or disqualify eligibility triggers. While some data entry can be straightforward, way too often we see a perfectly eligible applicant is found ineligible strictly due to how they accidently or incorrectly filled out a portion of an online registration. Having more IT gurus to work on this problem could help iron out some of the wrinkles that cause frustration in this area. And while there are varying options for registering with FEMA under normal conditions (at a direct recovery center, over the phone, online, FEMA home visit, etc.), those may not always be available during a pandemic or other “non-traditional” event, where processes may need to be manually overridden.
Q: Why aren’t multiple family members allowed to file together?
Meghan: FEMA’s recovery programs are structured to act like an insurance company, highly focused on risk mitigation and management. IA (and PA) programs are designed with insurance principles at heart—to be the payor of absolute last resort—that lead to many people just stopping or opting out. The system is complicated, but it’s designed to help reduce instances of fraud, waste, and abuse.
Kelly: The hesitancy to allow multiple registrations is based in a desire to cut down on duplications and fraud. However, the agency should explore other ways of resolving this issue. Family situations and household configurations are not the same as in the past, so the agency does need to adapt to modern situations. FEMA could also be more consistent in their processing and documentation required for all applicants, and maybe explore other methods for reviewing cases where multiple households live under the same roof. We should be eliminating a “one way fits all” mentality when it comes to automated processing.
Q: What are ways the process could be easier for applicants?
Kelly: Education is critical. The more information the public has on why these systems are in place and how to navigate them quickly, the better. COVID has made both issues of educating the public and processing their registrations even more problematic. It’s been harder to get applicants face-to-face with FEMA representatives, and traditional community outreach for education purposes wasn’t an option. In general, most people do not understand the program and think that they automatically receive money from FEMA, regardless of their circumstance. Once you get all of the facts and truly understand the process, you can understand what you really are eligible for on an overall level. This can help break down that idea of what one may “expect” to receive—it squashes the notion that an automatic check is forthcoming because “that’s what FEMA does.” Applicants should be able to receive clear information regarding the program, so they understand the nuances in an uncomplicated way and are aware of potential situations that may arise during processing.
Meghan: This raises a key issue. With the potential for large-scale climate change disasters increasing, we need clear policy and supporting infrastructure that outlines support levels, roles, and responsibilities to respond quickly and effectively. COVID-19 and previous significant disasters have demonstrated the disconnect between FEMA statutory authority, internal policy, and the desire of congressional and executive leaders to use FEMA as an “easy button” to make disaster-affected individuals whole again. Instead they need to decide what FEMA's role is going to be—then enact legislation and put policies, procedures, and systems in place to make it successful.
Marko: There are fundamental policy issues surrounding all the disaster programs that touch on the roles of local, state, and federal government. These policy issues also affect the insurance industry and impact what is covered and what assistance from non-profit and private entities is available or how it affects potential duplication of benefits. The Stafford Act, which today’s programs are based on, has largely remained the same since 1988 with only some changes around the margins. Reforms have been disaster-specific rather than systemic and holistic.
FEMA may have the lead in the overall coordination of the nation’s response to all hazards disasters, but they do so with the assistance and support of all executive departments and agencies. Leaders should consider a “whole of government” solution along with any re-envisioning of disaster response and recovery. Some solutions can be easier to fix such as simple data processing solutions, added ways to provide information, better selection of those delivering the messages, and more streamlined review levels and approval processes. Other solutions may be more difficult, such as changing entire intake systems and reconfiguring eligibly options to meet current modern scenarios.
After talking to my colleagues, I identified nine questions that need to be answered to address the policy disconnect between how FEMA assistance has been historically administered and interpreted and how recent catastrophic disasters have forced an expanded role:
- Where does the responsibility for all disaster preparedness, response, recovery, mitigation, and overall resilience really lie?
- What role should each level of government play and what support should they be expected to budget for and provide?
- What is the disaster-affected individual’s responsibility for having adequate insurance and taking prudent steps to prepare themselves?
- Should FEMA be the first answer on federal assistance—or should other options be considered based on expertise and need?
- Should federal programs be structured like insurance, block grants to state and locals, or reimbursement programs for after-the-fact costs? Or some combination of these?
- How can the aid systems be simplified to cut out red tape, delay, and confusion? And how can they be made more accessible to populations with access and functional needs?
- What are the best ways to educate the public about what is available without the current conflicting messaging they get from government, the media, or elected officials?
- How can technology and program design speed effective aid while reducing fraud, waste, and abuse? At the same time, recognizing that the country’s population has unequal access to broadband and other technology, how can FEMA aid be accessible to all?
- How can programs be built and modularized in order to remain flexible to unforeseen events?
COVID-19 and the last few years of numerous “once in a lifetime” climate events have provided a window into future disasters and the expectations of America’s disaster response and recovery system. A systematic after-action review—of not just the response and recovery plans and actions taken, but the legislation, policies, and procedures that guide those plans—is critical to answering these and many other questions needed to prepare our country to be more resilient to future disasters.
[Editor’s note: This article includes expert insights from Meghan Treber, Kelly Wilson, and Marko Bourne, who have spent their careers on the front lines of public health and disaster recovery.]