59 years ago today, after grassroots organizing, Medicaid was signed into law by President Lyndon Johnson as part of a myriad of progressive legislation won by organizers during the civil rights era. A public health insurance option aimed at providing coverage to low-income people regardless of race, Medicaid represented a pivotal shift in public attitude that people deserve access to healthcare no matter who they are, what they do, or how much they make.
Since its launch, the program has insured millions of Americans every year, with almost half of participants being children. It’s undeniably responsible for expanding access to health care for people who can least afford it or have been historically denied it, and has demonstrably improved health outcomes and reduced disparities in who can receive health coverage.
For nearly 60 years, it’s been improved upon, attacked, and fought for at all levels of government — and one grassroots fight in Indiana shows us that it’s still worth protecting and expanding.
The evolution of Medicaid
The program has also evolved since its creation in 1965. Medicaid coverage was fairly limited initially, accessible mostly to people with disabilities or people with severely low incomes who had children. But in 2014, the Affordable Care Act expanded Medicaid to a significantly larger portion of adults under 65 making low incomes. After GOP-led legal battles, the Supreme Court ruled that states could not be required to adopt the expansion, allowing mostly Southern states with high-POC populations to opt out and leaving many people without care. As of now, though, 40 states and Washington, D.C. have enacted some sort of Medicaid expansion, increasing the number of people who are now insured by the millions.
But Medicaid isn’t perfect. Compromises were made in order to get the votes needed to enact it in 1965, and some of those compromises were purposefully designed to make the program work better for some people over others. Racist and classist barriers to participation were the result, and they are still causing disparities to this day.
On top of these foundational compromises, states can also apply waivers to their Medicaid expansion agreements. This means they still receive federal funding to run their program, but can apply their own rules to it and dictate how people can participate. Waivers aren’t always a bad thing – in some cases, they make way for ingenuity, experimentation, and finding better ways to operate Medicaid programs. But they also give states a lot of room to impose strict or unnecessary requirements for the nefarious purpose of wanting to deny as many people as possible care, particularly people of color.
The Indiana example
The state of Indiana is a great example of how these waivers can be weaponized against the spirit of Medicaid — and how grassroots organizing power can fight back against states’ attempts to shrink the program.
Since its inception, the Healthy Indiana Plan, Indiana’s Medicaid program expanded under the ACA, has included structural barriers which have made it harder for members to get and stay enrolled, contributing to costly churn and devastating coverage losses for Hoosiers. Under the leadership of Governor Mike Pence, Indiana’s Family and Social Services Administration has applied for waivers to impose work requirements, require trivial payments to demonstrate “personal responsibility,” and ban retroactive coverage normally available to Medicaid members.
Aside from the fact that healthcare is a human right that should be available to all, work requirements are problematic because they leave a massive portion of the population uninsured, denying caregivers, students, people with disabilities, and others from receiving coverage. They’re administratively burdensome and because most people who rely on public health coverage work high-turnover, low-wage jobs, people’s care may be inconsistent depending on the stability of their position or the job market. On top of all of this, proving you’re employed is often an unclear or complicated process which sets many people up for failure, even if they are meeting all the requirements.
Retroactive coverage bans are another tool used to bar people from getting the coverage they need to keep them from going into thousands of dollars of medical debt. Because Medicaid is complex and hard to understand, many people do not even know they are eligible for it before they find themselves in a health emergency. Retroactive coverage allows a person who was not enrolled in Medicaid at the time of a medical emergency to apply and be covered for up to three months prior to the date of application to the program. This ensures that if a person who was not covered by Medicaid but was eligible for it has an emergency and must undergo treatment, they will not be saddled with a hefty bill.
That brings us to the Goliath of administrative red tape and burdensome paperwork: the requirement to submit a token monthly payment similar to an online portal called “POWER Accounts.” These POWER Accounts increased administrative burden and Medicaid churn, leading to an estimated 60,000 Hoosiers losing coverage in just one year. The system was confusing and hard to navigate, and deadlines for payments were often unclear. If participants missed even one payment, they could be booted to a lesser plan or sometimes lost coverage altogether, and under the original version of the program they could be locked out from reapplying.
The irony of all of these requirements, deemed necessary by Indiana Republicans for the success of the program, is that they were all paused during the COVID-19 pandemic – and everything was fine. The program went on serving the people it was created to serve, and it became clear the requirements were unnecessary and, if reenacted, they’d hurt low-income people and communities of color.
Grassroots power expands healthcare access
Indiana organizing group Hoosier Action had long known these things to be true. They started organizing to eliminate work requirements in 2018 with the help of Community Change and Community Catalyst, and soon added POWER Accounts and the retroactive coverage ban to their list as well. Because of the over 10,000 petition signatures they garnered, the weekly phone-banking parties they hosted, the door knocking campaigns they ran, and the thousands of conversations they had with Medicaid participants, the work requirement was eventually suspended following a lawsuit they helped to support.
And Hoosier Action has kept fighting. Just this month, a federal judge struck down mandatory contributions to POWER Accounts, siding with plaintiffs represented by the Indiana Justice Project and National Health Law Program. He ruled that allowing Indiana to charge Medicaid recipients premiums violated the original spirit of Medicaid. Judge James E. Boasberg referenced the over 60,000 people who had been unenrolled from care due to missing a payment as proof that too many people were at risk of losing their healthcare under the Healthy Indiana Plan’s stringent requirements. He was also swayed by powerful public comments that described the burdensome nature of the POWER Accounts program, many of which were submitted due to Hoosier Action’s organizing.
“I was one of the many Hoosiers who lost their coverage due to being unable to afford my POWER Account payment. I’m writing today to ask that you eliminate power accounts and any other means of confusing red tape that might prevent everyday Hoosiers from needed healthcare,” said one HIP user, who was cited by Judge Boasberg in his ruling.
The ruling also struck the retroactive coverage ban, another win for advocates and Medicaid participants.
Opponents of making healthcare more accessible in Indiana are trying to reign in this progress and challenge the decision, but because the program operated just fine during the pandemic with the requirements on pause, it’s unlikely their arguments hold weight. Because of Hoosier Action and directly impacted people who used their voices to fight for their coverage, they protected and expanded Medicaid in the state of Indiana.
The future of Medicaid
It’s a message that can be applied to the greater movement for Medicaid expansion across the country and the enduring work to make health care accessible and affordable to all. Two things can be true: Medicaid isn’t perfect — it was built with structural issues that exacerbate racial disparities in health care. But it’s also helped millions, many of them people of color and children, and should be improved and built on rather than scrapped altogether.
Medicaid was founded on the belief that all people, regardless of income, background, race, gender, disability, parental or employment status, and more are deserving of accessible and affordable health care. Our society is stronger when people can receive the medical care they need without having to go into thousands of dollars of debt or being turned away because they can’t pay. Health care should be a human right. We should take care of each other.
There’s a lot to do to improve Medicaid, and our healthcare system in general. It’s our job to replicate organizing movements like Hoosier Action’s to fight for a better system and to eliminate the inequities baked into it. Our movement can break down the barriers that keep people from accessing health care and ensure that every person has what they need to thrive. We will call out inequities and disparities when we see them, organize to dismantle them, and keep fighting for an America where healthcare is a guarantee and a right, not a privilege for the wealthy or determined by the whims of CEOs.
When we look back next year on Medicaid’s 60th anniversary, I wonder what we’ll have accomplished.