Why the Number of Uninsured Children is Going Up: A Conversation with Professor Joan Alker

Interview by Jennifer Powley

The United States has made considerable progress to ensure that most children have health insurance, and child uninsured rates reached a historic low in 2016. However, since the start of the Trump Administration, more than 726,000 children have become uninsured for a total of 4.4 million. On top of that, there’s a public health emergency and the Affordable Care Act sits in the middle of hot political debate as the Supreme Court threatens to strike it down. To unpack the complicated but urgent issue of rising child uninsured rates, Associate Editor Jennifer Powley sat down with Prof. Joan Alker through a virtual interview.

Joan Alker is the Executive Director and Co-Founder of the Center for Children and Families at the Georgetown University McCourt School of Public Policy. She is also a research professor at Georgetown, and her work focuses on health coverage for low-income families and children. She is an expert on Medicaid, the Children’s Health Insurance Program (CHIP), and the Affordable Care Act. She recently released an impressive report that includes a state-by-state breakdown of child health care coverage and highlights the alarming spike in uninsured children during the Trump Administration.

JP: Can you please describe a little bit about yourself and what you do within the Georgetown University Center for Children and Families?

JA: I’ve been at Georgetown for almost 20 years, and I went to graduate school for political science at Oxford in England where I was very interested in comparative social policy. I was much more internationally focused, but I came back to the States, and after working on the Dukakis campaign briefly, I got my first job at the National Coalition of the Homeless. It was a very formative experience for me. I worked there for five years and I learned so much about poverty in this country. That’s what really motivated me to work on domestic issues. However, I got really frustrated working on homelessness because our country’s response is such a Band-Aid. I wanted to work on a more structural issue, so when a job became available at the consumer health group Families USA, I went there. I found my way to working primarily on Medicaid, and I really felt that this was an important area to work on. It was also intellectually challenging and fascinating. Medicaid plays such an important role, for children and really everyone, in our healthcare system by providing health insurance to people who don't have enough money to afford private insurance or to those who have too high needs, like people who are disabled or in nursing homes. Private insurance doesn’t work for them.

All children below 138% of poverty are eligible for Medicaid. It’s mandatory, it’s free, and it has - on paper - the best pediatric benefit we have in law: the EPDT benefit, which the Academy of Pediatrics regards as the “gold standard.” It doesn’t work perfectly in the real world, of course. But as a statutory matter, it’s a really great law. For poor families in this country, it’s essential that it works well. It is also the way in which our federal government spends the most money on low income people. As a consequence, Medicaid is always in the crosshairs in a lot of the conflict in our political system.

About 15 years ago, a colleague and I were approached by the David and Lucile Packard Foundation to start the Center for Children and Families. The idea was to be a technical assistance hub for a project that would ensure that all children in the United States have coverage. It’s called the “Finish Line Project,” and we have children’s advocacy groups around the country who work with us and are funded by Packard . That project has continued to be a backbone of what we do. We now have some other funding partners that span 22 states. We engage in public policy discourse, and we try to advance good policy for low income children and their families.

JP: What are the largest barriers children face to health insurance coverage?

JA: There are two ways to think about this. One is that because of the way that our health insurance system is structured, having insurance is the price of admission. We are the only country with an advanced economy that doesn’t have some kind of single-payer system. As a consequence, we have uninsured people. As my friends in England used to say, “What is that? What is an uninsured person?” In the US, there are different ways people get their coverage: primarily through increasingly unaffordable employer-sponsored coverage or through Medicaid/Medicare public coverage. But that’s not enough.

You have to pay the price of admission, but you also want to see a good show. We have to pay attention to the kinds of barriers that families might face. If they’re in private insurance, they may face cost barriers because private insurance can be very expensive and there are high deductibles. Within coverage, there are other issues too. Are there enough providers? Are there enough culturally sensitive ones? Are there a lot of barriers put up by managed care companies to accessing the treatments people need?

JP: Why is it important for children to have health insurance?

JA: Having health insurance is a health issue, but it’s also an economic issue. Anybody who’s uninsured is exposed to high medical bills, medical debt, and even bankruptcy. In fact, medical debt is the leading cause of bankruptcies in the United States. Also, children who had Medicaid when they grew up as opposed to being uninsured have higher wages, and access to family planning services help young women be in the labor force and pay more taxes.

With children, there’s a lot of research about how important it is for them to have insurance. Children who have Medicaid as opposed to being uninsured have better outcomes in school. They have higher high school graduation rates, higher college attendance, and better health outcomes in both the short term and long term. Their access to needed care is better, such as access to prescription drugs. For example, Asthma is a treatable disease, but children need to be able to go to the doctors to get their medications like inhalers. Unfortunately, Asthma is one of the leading causes of children missing third grade, and kids who fall behind in third grade are less likely to graduate from high school. Children with insurance also have better health in the long run. Kids who were insured growing up have lower rates of chronic diseases like hypertension and obesity, and they even have lower mortality rates.

It’s also important for everyone to have insurance including of course parents and caregivers from a children’s perspective. A good example is maternal depression, which inhibits women from bonding as much with their children. It is harder to get treatment for depression if you are uninsured.

JP: You just released an impressive but alarming report of children’s uninsured rates. Despite the 8-year trend of decreasing uninsured rates among children, the trend flipped and the number of uninsured children increased every year during the Trump Administration, totaling to an increase of about 726,000 children since 2016. Was this rise unexpected?

JA: I was taken aback by the third year of the Trump Administration, which was the worst of the three years. Medicaid enrollment was going down starting in 2017, which we knew would mean that the number of uninsured children would go up. Almost 60% of these uninsured children are eligible for Medicaid and CHIP; they just aren’t currently enrolled. That’s the key issue. States put up red tape barriers where fewer kids get in or there are more red tape barriers at renewal. This means kids lose. We knew the Trump Administration was both explicitly and implicitly encouraging states to get tougher by claiming that there’s fraud in Medicaid that needs to be rooted out. With respect to beneficiaries enrolling and cheating the system, there is no data to support that at all, especially for children. There’s fraud in every health care program, but it is the providers and the plans that are perpetrating the fraud. It’s not the beneficiaries. It’s not children and families.

Another issue was cuts in outreach and enrollment for the Affordable Care Act, which we knew would have a negative impact. And finally we saw a “chilling effect,” especially with Latinx children which is embodied in a complicated “ public charge” regulation and real hostility towards immigrant families. Lots of children who are citizens but have immigrant parents are scared to interact with the government because it could hurt their parent’s efforts to change their citizenship status or lead to their deportation if they’re undocumented. We were not surprised, but the fact that in 2019 the unemployment rate was low, the economy was good, but there was a jump in the number of uninsured children was a little surprising and disturbing. Generally speaking, we would expect a better economy to lead lower uninsured rates.

JP: Can you please further explain how the Trump Administration’s efforts to undermine the Affordable Care Act contributed to these striking numbers, specifically the “hostile climate” created to deter immigrant and mixed-status families from enrolling their children in public health insurance programs?

JA: The Urban Institute did a survey of mixed-status families and found that about 20% of families said “yes, I am avoiding enrolling my child in Medicaid, CHIP, or SNAP because I am scared to interact with the government.” In 2017, Congressional leadership tried and failed to repeal the Affordable Care Act, and they delayed the extension of the Children’s Health Insurance Program that needed to be renewed. So, all year long, families were hearing that their public coverage may be going away, that Medicaid was being cut. Now they hear the Supreme Court may strike down the Affordable Care Act. There’s so much news about public coverage going away, and at the same time, the Trump Administration cut funds for outreach and enrollment systems and community-based assisters. At the time when families were getting all of these negative messages, the support that could help them navigate complicated public coverage options was being cut.

JP: Looking at the upcoming Presidential election, how do you think the outcome will affect child uninsured rates over the next four years?

JA: It is going to be very consequential. In the event of a Trump victory, I think we are going to continue to see children lose coverage. There are a lot of complicated issues right now with the pandemic and the public health emergency, but leaving that aside, I’m very worried that if President Trump is reelected, we will continue to go in the wrong direction. There is a new study out by the Urban Institute that if the Affordable Care Act were struck down by the Supreme Court, another 1.7 million children will become uninsured. That would be pretty catastrophic.

If we see a Biden victory, I’m more hopeful that we might start going back in the right direction. I want to note that progress for kids predates the Affordable Care Act. For decades, as a country, we’ve been working on solving this problem. It has had bipartisan support. The Medicaid expansions for kids happened in the 90s when President Raegan signed them into law. The Children Health Insurance Program was a bipartisan initiative in 1997. We’ve worked for decades as a country to get that number down, and we reached a historic low in 2016. We know what to do, we can get back on track, but we need leaders who are committed to do that. Biden has been clear that he supports the Affordable Care Act and he wants people to have coverage, which is pretty fundamental. I am confident that we would see efforts to turn that number around. However, the “chilling effect” and fear of mixed-status families, particularly Latinos, isn’t going to change overnight. There is a lot of fear in that community. Although it’s gotten worse recently, it’s always been there, so it’s going to be harder to turn around.

JP: Reading your report, you said it is impossible to estimate the number of uninsured children in 2020 right now. Can you please describe the pandemic’s effect on the number of uninsured individuals?

JA: We use Census Bureau American Community Survey data for our report every year, and the 2020 census won’t be available until the fall of 2021, so we won’t have the source that we use for “apples to apples” to compare over the years. We did get an estimate from the Urban Institute about how many children have lost coverage as a consequence of the job loss associated with the pandemic. They estimated that about 300,000 children have lost coverage, and this is on top of and separate from the other issues we have talked about: red tape, chilling effect, and cuts of outreach. As a consequence of the public health emergency, one of the Covid relief packages created a disenrollment freeze in Medicaid that started in March. That’s great and very important. States cannot kick anybody off Medicaid at the moment, so for now that has ended the red tape losses we were seeing. The Urban Institute accounted for that in their estimate, so unfortunately 300,000 is probably a pretty solid number. That will bring us to over one million children who lost coverage during the Trump years.

JP: What would you do as a lawmaker to increase healthcare insurance coverage?

JA: I’m going to answer with respect to children, but I would like to note that I think it’s vitally important to think about everybody. Children are going in the wrong direction but they’re doing better than adults, and really everybody has to have coverage. I did a recent piece in Health Affairs with some wonderful colleagues about the options for children in particular. I think, theoretically speaking, a single-payer system would be the best way to ensure everyone has coverage. But, I’m not very optimistic that the political support is there and that it would be able to pass anytime soon. So, I think the best solution for children is to expand Medicaid and require states to cover all children under 300% of poverty, and then over that income range families have some subsidized marketplace/ACA coverage and a buy-in option for families who aren’t subsidized. Having the federal government pay 100% of the cost, including for undocumented children, for kids up to 300% of poverty would go a really long way to ensuring that all kids have coverage. We need federal requirements, because unfortunately right now we see big disparities by state depending on where children live

JP: Is there anything else you would like to add?

JA: The other issue to flag is the Medicaid Expansion, which is for parents and other adults, that’s part of the Affordable Care Act. We still have 12 states that have not passed that. Even though kids’ eligibility isn’t affected, it’s an important issue for kids because states like Texas, Florida, and Georgia, where we have a lot of uninsured children, have not expanded Medicaid to their parents and other adults. When a state does, it helps kids because there is a close correlation between parent uninsured rates and child uninsured rates. We call it the “welcome mat” effect. Due to all of the discussion and outreach around a new coverage option in Medicaid, some parents come in and find out their kids are eligible or that their kids were kicked off and they didn’t know it. For the 12 non-expansion states, particularly Texas, Florida, and Georgia, if they wanted to, they could pick up the Medicaid Expansion right now and that would be important for kids and families.