‘Filling out the census is like wearing a mask’ | Feature | Chicago Reader

‘Filling out the census is like wearing a mask’ 

As a second wave of infection looms, the count is more important than ever.

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  • Unsplash / United Nations

"If your aim is to see your neighbors die, don't fill out the census," census researcher Andrew Reamer tells those who have asked him how important the census is over the last few months. In the middle of a pandemic, he says, the stakes have never been higher for census completion. "In a way, in a very strong way, filling out the census is like wearing a mask in public. It has the same kind of impact. If you want to prevent your neighbors from getting sick and dying off, [make sure they] have protections when they lose their job, fill out the census."

As many across the city turn to community clinics for coronavirus testing, rely on Medicaid to cover COVID-19 expenses, or hope that local hospitals are stocked with enough ventilators to handle the looming second wave of infection, federal dollars flow into the city to fund these programs and more, allocated locally in direct proportion to census responses collected every ten years.

During a public health crisis, census numbers underpin the national allocation of lifesaving materials to cities across the country and an undercount could be deadly, resulting in an unbalanced distribution of resources. "One example is, a month ago, ventilators were in the news every day and FEMA had guidelines for how many ventilators went to each state," Reamer explains, remembering the national debate over the allocation of the 12,700 ventilators in the federal stockpile. These guidelines were based largely on city size and the local infection rate, which factored in the number of infections and fatalities in an area, then were normalized using census data for local population as captured by the last census. According to a ProPublica report, 1,122 ventilators have been added to Chicago's ventilator count since March 19, some of which were allocated to the city due to the census-informed distribution guidelines. With predictions that the United States will soon be facing a critical shortage of the lifesaving machines, and reports of Chicago hospitals already running out, every additional delivery means one less decision made in a hospital about who lives and who dies from an equipment shortage.

"Every organization that is trying to track this, from Johns Hopkins to the New York Times, is using the census. To see what's happening in each state, are the rates of infection going up or down, you can only do that if you have decent census data," adds Reamer.

But the best way for a city to be prepared for a pandemic is to have strong health-care infrastructure before the public health crisis hits. "Census results inform planning and funding decisions for the city including hospitals, health clinics, and health-care services," says Marilyn Sanders, the Chicago Regional Director for the census. The count informs the Chicago city government's determination of where new hospitals and clinics are needed and how many people hospitals may need to serve. Census numbers also impact federal block grant funding for cities to use in the construction of hospitals and health-care clinics, as well as to put towards funding resources for health-care facilities.

In a city like Chicago where a zip code could equal a 30-year bump or decrease in life expectancy, and where high infection rates and poor infection outcomes have been concentrated in just a few neighborhoods, improving the uneven spatial distribution of hospitals, clinics, and physicians is a high priority. Currently, the city's south and west sides grapple with a dearth of primary care clinics, acute care hospitals, and both primary and specialty care physicians. As a result, hospitals like Saint Anthony Hospital in North Lawndale are being pushed to their limits, with intensive care units over 100 percent of their capacity.

Of the hundreds of federal grant programs, many are not based on census-derived formulas to distribute funding. However, due to the fact that the largest federal grants are formula-based, the share of total federal grant funding affected by the census is significant. In recent years, over 90 percent of federal grant dollars to state and local governments was allocated by formulas using census numbers. As a result, the biggest local impact of census completion, according to Danny Chun of the Illinois Health and Hospital Association, is not through the construction of new hospitals or clinics, but through the funding Illinois will receive for health-care programs like Medicare, Medicaid, and the State Children's Health Insurance Program (CHIP), which allow seniors, low-income Chicagoans, and children to access emergency health care and stop the spread of the virus across the city.

Jennifer Kusma, a pediatrician and faculty member at Lurie Children's Hospital, explains that a fairly large proportion of the patients Chicago hospitals serve are covered by Medicaid and Medicare, stating that between a third and a half of the Lurie patients have health-care coverage through Medicaid. "If we have less dollars for Medicaid funding, it would limit our ability to serve those families and would eliminate those families' ability to have the health coverage they need to be seen."

In his Counting for Dollars 2020 Project, which looked at 316 federal spending programs, Reamer found that nationally, of the $1.5 trillion the federal government annually allocates to state and local governments, half goes towards Medicare reimbursement and an additional quarter goes towards Medicaid, together three-quarters of the locally allocated federal budget. "Basically, Medicaid is a gift from the rest of the country," he says, as the data derived from the census doesn't determine the total amount of funding available nationally, but determines proportional allocation across states and cities. Over the last ten years, the annual cost to a state's Medicaid program from each person who did not fill out the census was about $1,100 per person. "That's real money that the state doesn't have to spend on public health and health care, or that it then needs to come up with by raising taxes," Reamer noted.

But even for those who never get sick or don't know anyone who will become infected, the economic and social impacts of the pandemic still reverberate. Most of the money allocated through congressional stimulus and economic acts, currently totaling over $3 trillion, of which Illinois received $4.9 billion with a $1.1 billion allocation to Chicago, are distributed on the basis of census data, helping people manage the shutdown of schools, businesses, and more in the era of social distancing.

"So, with COVID-19, more families are losing their jobs and likely going to need government assistance through these programs. If we're undercounted, it's less money to the state for those programs," explains Kusma. These programs include everything from Chicago's food stamp initiative and the Supplemental Nutrition Assistance Program (SNAP), to the Women, Infants, and Children nutrition program (WIC) and unemployment insurance. Though the actual eligibility for food stamps is not related to any individual's census response, residents in states with high unemployment as captured by the census can receive waivers for extended redemption of the food stamps. And programs like CPS's weekday free and reduced lunch food distribution program? That's all census funded as well.

As the only comprehensive count of the United States population, social science and health researchers trying to grasp the scale of the pandemic's spread in each local context are reliant on census data to understand the trends in virus spread and predict where it could go next, central to state and local policies and recommendations for social distancing, business closures, cancellations of events like Lollapalooza and Riot Fest, and more. Already, researchers are gaining new insights into the local experience and impacts of the coronavirus, due to a new census initiative, the household pulse survey.

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Every week, the Census Bureau produces statistics at a state level and for the 15 largest metropolitan statistical areas across the country on factors like employment status, spending patterns, food security, housing, physical and mental health, access to health care, and educational disruption during the pandemic. Survey results have shown that nearly half of Chicago residents have lost income or employment and a quarter are experiencing housing insecurity.

"Anyone who did not fill out the 2010 census, actually, is helping to throw dust in the eyes of public health experts," says Reamer. "It will be a booming business over the coming decade in epidemiologic studies, regarding everything that's happening right now, how it happened, how things spread. Researchers can also develop models both about how to contain this next wave and how to respond to it with public health and economic health programs. All the census data is integral to those epidemiological studies. The validity and reliability of those studies are dependent upon people's willingness to fill out the census."  v

This story was made possible by a grant from Forefront administered by Public Narrative.

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