The survey of 1,950 adults in immigrant families, conducted in December, found that the so-called public charge rule, which has not yet been finalized, has discouraged many families from using healthcare and other public benefits for which they qualify.
That includes families to whom the rule would not apply, such as those applying for political asylum and families whose members already have green card status or are all naturalized citizens.
"These families are in need of healthcare assistance and they are eligible for these programs, but they are being frightened away from accessing care," said Cathy Moore, executive director of ECHOS, a social service agency in Houston.
The Department of Homeland Security, which issued the proposed rule last October, did not respond to a request for comment.
Of the families that reported not participating in a public benefit program due to concerns about the proposed rule, 14.7% were in families where all the non-citizen members already had green cards, and 9.3% were in families where all members were naturalized citizens.
Though the rule would directly apply only to adults, parents reported being worried about their children using public benefit programs like the Children's Health Insurance Program, and the Women, Infants and Children nutrition program. Adults in immigrant families with children were more than twice as likely to report chilling effects as adults in families without children—17.4% versus 8.9%.
Hispanic adults in immigrant families were more than twice as likely, at 20.6%, as non-Hispanic white and non-Hispanic non-white adults to report that they were deterred from using public benefit programs.
SNAP, Medicaid and CHIP were the three most common programs that immigrants reported dropping out of or not signing up for.
The 447-page proposed rule would allow immigration officials to consider legal immigrants' use of public health insurance, nutrition and other programs as a strongly negative factor in their applications for legal permanent residency. Use of non-cash benefits previously was not considered.
The agency received more than 200,000 public comments, with a wide range of healthcare groups warning the rule would have broad negative effects on the healthcare system, government budgets and public health and urging DHS to withdraw it entirely.
The rule's changes also would apply to citizens' and legal residents' requests to bring family members into the U.S., as well as to young people, known as Dreamers, who have legal status under the Deferred Action for Childhood Arrivals program. They would not apply to people granted refugee status or political asylum.
The rule would cover use of Medicaid, Medicare Part D subsidies, SNAP and Section 8 housing vouchers. The agency asked for public comment on whether CHIP also should be included. It would not consider Medicaid or other benefits received by U.S. citizen children as a negative factor in their families' legal residency applications, nor would it count WIC, earned-income tax credits or the Head Start pre-school program.
But that doesn't mean immigrant families necessarily understand the proposed rule's complexities, such as who would be affected and what programs would be covered.
The Urban Institute survey found that 62.9% of adults in immigrant families were aware to some degree of the proposed rule; those who had heard "a lot" about it were the most likely to report chilling effects on their family.
The Kaiser Family Foundation estimated last year that up to 2 million children who are U.S. citizens with immigrant parents could drop out of Medicaid and CHIP, and most would become uninsured. That's because the parents would worry that their children's use of those programs could jeopardize their legal status. Those concerns likely would spill over to children of undocumented immigrants, who are not covered by the proposed rule.
In 2016, there were 10.4 million citizen children with at least one parent who isn't a citizen, and 56% had Medicaid or CHIP coverage. An estimated 27 million immigrants and their children are part of families with at least one member receiving public benefits, according to the Migration Policy Institute.
Healthcare leaders and advocacy groups say the proposed changes would have a massive impact on health-related services for low-income children and families. They say it could drive up uncompensated care costs, increase use of emergency departments, endanger maternal and infant health and heighten the risk of infectious disease epidemics. It also could shift major costs from the federal government to state and local governments.
"Our concern is if individuals decide not to enroll in health programs they are eligible for, it's not that they won't get sick. It's just they won't be able to access care and most likely will wind up in the emergency room sicker and costing more," said Erin O'Malley, senior policy director at America's Essential Hospitals.
Enrollment in Medicaid and CHIP dipped last year by about 1.6 million, including 744,000 children, according to a report by Families USA.
O'Malley said that reduction could be at least partly due to immigrants dropping out of Medicaid and CHIP or refusing to sign up due to the proposed rule.
"I've been surprised by just how sweeping the impact of this policy change could be on our member hospitals," she said. "We have individual hospitals that serve populations that are at least 50% immigrant. They are concerned about what this could mean for providing care to their patients."
Providers and advocates say there's rampant misinformation in immigrant communities about the rule. But they are leery about giving people advice about whether to participate in public benefit programs because of uncertainty about how the proposed rule would be enforced. No one wants to give advice that could inadvertently lead to people being deported.
Even immigration lawyers are confused about the proposed rule, Hernandez said. Some are telling clients who are seeking political asylum not to apply for any benefits, even though the rule explicitly does not apply to them.
All this is taking place in an atmosphere of generalized fear due to the Trump administration's broader crackdown on immigration, experts say.
"We've had parents come in and say they want to disenroll their children from CHIP despite the fact that the children are citizens born here in the U.S.," Moore said. "They are frightened to even be on the radar."