Advocates, experts warn people may not know they could lose Medicaid coverage until it's too late

An estimated 16 million Americans could lose their health care coverage with funding cuts and policy changes in the federal reconciliation bill. About half of that loss is expected to come from changes that could lead to hundreds of billions of dollars in Medicaid cuts. Advocates and experts warn people may not know they’re losing their coverage until it’s too late.

What causes the confusion?

Tracey Hutchings-Goetz talks to a lot of people. It’s a big part of how she helps them navigate and understand the complicated landscape of Indiana Medicaid — which includes over 30 different programs.

“There's such a kind of alphabet soup of branding and logos and different things going on,” Hutchings-Goetz said.

Hutchings-Goetz is an organizer with Hoosier Action, a community advocacy group. She said she’s had thousands of conversations with Indiana Medicaid members since she started as a volunteer in 2017.

She said the branding may have been used to remove some of the stigma around the program, which provides coverage for people with lower incomes or disabilities, as well as older adults.

“The idea was that if you brand it with state-specific branding folks are going to be less likely to internalize shame about enrolling,” Hutchings-Goetz said.

But, Hutchings-Goetz said it can obscure that people get coverage from the publicly funded program.

For example, someone in Indiana’s Medicaid expansion program may know it simply as Medicaid or the Healthy Indiana Plan, HIP, or even just by which insurer manages their coverage. There are also subcategories like HIP medically frail, which covers people with complicated medical needs that don’t fit under the Social Security Administration’s “strict” definition of disability.

“It is just objectively confusing,” Hutchings-Goetz said. “It is really confusing to have this different branding, to have the insurance companies, to have Medicaid — like it really is hard to follow.”

Branding can vary not just between programs, but also between states. The Indiana Children’s Health Insurance Program, or CHIP is also called Hoosier Healthwise. In Georgia, it’s PeachCare for Kids. In Vermont, it’s Dr. Dynasaur.

Hutchings-Goetz said even when people are aware of the programs, it’s still difficult to follow Medicaid policy discussions. The federal changes and cuts are one part of the recently passed budget bill which is more than 1,000 pages long.

“The stumbling block has been more that folks are unaware of the Medicaid cuts in the federal bill,” Hutchings-Goetz said. “They just don't know the content of the federal budget bill.”

Hutchings-Goetz said when the language is included in a reconciliation bill, instead of being discussed “on its own merits,” it contributes to people feeling confused and scared.

Navigating more than just federal changes

Indiana, like several other states, isn’t just preparing to implement changes from federal lawmakers. The Indiana Family and Social Services Administration is also working on changes from state lawmakers. Both the state and the federal legislation include implementing work reporting requirements, and increased eligibility checks and monitoring.

Indiana’s Medicaid Director Mitch Roob said the state still isn’t sure how it plans on handling the increased administrative burden created by the new policies.

“In terms of administering it, it will be, unquestionably, a challenge,” Roob said. “But we'll face that challenge.”

Roob has also requested “flexibility” from the federal government to alter HIP eligibility in response to caps placed on a common revenue source states use to fund Medicaid, known as “provider taxes.”

Hutchings-Goetz said she was concerned and “frightened” to see Roob and Indiana Gov. Mike Braun’s response to the lowered cap on provider taxes.

“Governor Braun and [Roob], in response to potential threats to the provider tax, were asking to [bypass] the power of the General Assembly and the public decision making process. And instead asking the federal government for permission to further constrain Medicaid enrollment,” Hutchings-Goetz said.

Indiana isn’t the only state that said it can’t afford to lose funding — Maine's governor also raised concerns about what the cuts could mean for the future of its Medicaid programs.

READ MORE: Medicaid members in HIP program say federal, state policy changes put their lives at risk

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That loss of funding could affect more than just those enrolled in Medicaid. Hutchings-Goetz said the changes will likely result in the cost of health care rising, more providers closing or moving to other states.

She also said there are more than 10 hospitals in rural Indiana the changes put at risk of closing because the state will lose a significant amount of funding — about 15 percent or between $17 billion and $28 billion over the next 10 years.

“Health impacts are going to worsen even for insured people who are going to be forced to wait even longer to receive care,” Hutchings-Goetz said. “Then, $17 billion is just leaving our entire state economy and that has been keeping our health care system afloat.”

Because states aren’t sure how they’ll implement the policies, people don’t know what the changes will look like in practice — which could lead to people losing coverage because they don’t know when or how the changes are being implemented.

People may not know what’s coming

Leo Cuello is a research professor at Georgetown University's Center for Children and Families. He said some people may not understand the effects of the legislation until they lose their health care coverage.

Even before the most recent changes to the federal legislation by the Senate, he was concerned that people don’t understand how much the reconciliation bill could contribute to coverage loss.

“We're at the tip of the iceberg in terms of public reaction,” Cuello said. “There are so many people who are at risk and don't quite understand that they're in the crosshairs.”

Cuello said it’s difficult to help people track what’s happening — even for experts like himself.

“By hiding the ball as long as they did, and sort of not showing exactly where they were going to make their cuts, it's been hard to communicate to people, here are the risks for you individually,” Cuello said.

Cuello said experts and advocates knew “big” cuts were coming, but they didn’t know which programs and populations would be most affected because of how the legislation was presented and moved forward.

Don’t ‘sit in the shame’

Hutchings-Goetz said it’s understandable that people don’t feel like they have the time, energy or even agency to do anything about the changes.

“Telling someone — ‘Hey, this is actually not your fault. It's confusing. This is actually not your fault. The system was not designed to support you’ — can pull people out of that shame, cynicism and disengagement and get them involved,” Hutchings-Goetz said.

By connecting with people, Hutchings-Goetz said she and other advocates can help them believe they have and deserve a role in shaping public policy.

“Do not sit in isolation. Do not stay alone. If you feel paralyzed or overwhelmed, like talk to a friend, talk to a loved one, knock on your neighbor's door and say ‘hi’ to them," Hutchings-Goetz said. "Lifts that seemed impossible, changes that seemed inevitable suddenly become something that can move, because we're not doing it alone.”

Hutchings-Goetz said even though the legislation is very unpopular, advocates are preparing for things to get worse. But she said that doesn’t mean people should stop asking questions or paying attention.

Hutchings-Goetz said people still should understand what rights they have and who is responsible for the policies that will impact their lives.

“A big part of what we're trying to do is make certain that there is accountability and that decision makers have to face the results of the decisions that they make,” Hutchings-Goetz said. “They should have to look in the eyes of constituents, who, frankly, might die because of this bill.”

Hutchings-Goetz said the policies will likely result in the average person being sicker and poorer. But she said just by talking about it, people can stay informed and engaged — even when it comes to something as complicated as Medicaid.

Abigail is our health reporter. Contact them at aruhman@wfyi.org or on Signal at IPBHealthRuhman.65.