Authors: Kaitlin Koffer Miller & Lindsay Shea 

To restate the obvious, the COVID-19 pandemic has been a challenging time across many sectors. 

In the early days of the declaration of a public health emergency (PHE), federal and state governments scrambled to ensure different protections, planning for the impact of sickness and community shutdowns on their lives. Actions included enhanced unemployment rates, child tax credits, and additional Supplemental Nutrition Assistance Program (SNAP) payments. These were all put into play to protect people when we knew they would be more vulnerable. One major protection was for Medicaid, a program that provides health coverage to millions of Americans with limited income and resources. At the start of the pandemic, Congress enacted the Families First Coronavirus Response Act (FFCRA) to ensure that people retained healthcare coverage during the PHE. 

One condition of the FFCRA required states to provide continuous Medicaid coverage, while preventing disenrollment for enrollees, to receive enhanced federal funding. This change was significant because it essentially stopped the in-and-out “churn” of Medicaid enrollees caused by administrative disenrollment. Administrative disenrollment refers to the removal of a person from Medicaid due to “administrative reasons”, like not to providing needed documentation or letting the Medicaid office know about a changes or updates to information. So, due to the pandemic and economic downturn, more people needed Medicaid coverage, and enrollment in the program increased significantly.  (by 30%) 

While the increase in Medicaid enrollment was a positive development for people who needed healthcare coverage, recent legislative changes have led to concerns about coverage loss.  In December 2022, Congress signed into law the Consolidated Appropriations Act (CAA), which ended the continuous enrollment provision as of March 31, 2023. This means that an estimated 5-14 million people could lose their coverage, which could reverse recent gains in coverage. This change in Medicaid enrollment is known as “unwinding”. It is a process where states can resume disenrolling individuals who no longer meet Medicaid eligibility requirements as they would have before the PHE.  

For autistic individuals, this change in Medicaid enrollment could have significant implications. It is essential to ensure that these individuals maintain access to healthcare coverage. Many autistic individuals require specialized healthcare services, including behavioral and speech therapies, to support progress toward their goals for their health and participation in communities. For many autistic individuals, Medicaid is the only way they can access healthcare services they need. With private insurance coverage being insufficient for autism services,  lower rates of employment among autistic adults, private insurance is often not an option. Without Medicaid, autistic adults may experience adverse health outcomes, if unable tomanage their health conditions effectively or if they cannotaccess specialized healthcare services and other home and community-based services.  

Right now, this policy issue is a big question mark. How many people will be impacted? What is going to be the extent of the coverage loss? What will be the impacts, long term and short term? The unsatisfactory answer is we don’t know. And we probably won’t know for quite some time. Many states are in a transition period over the rest of the 2023 calendar year. It will also be a long time before Medicaid claims data is available to study the full extent of the unwinding on longer term health outcomes. The Medicaid system takes months or sometimes years to move data from an actual date of service into data that researchers and policymakers can use, so we risk losing needed momentum to understand the problem. 

The continuous enrollment provision provided a glimpse of Medicaid/Medicare for all, a policy platform that proposed health care for everyone in the US, similar to other nations with universal healthcare like the United Kingdom.  In the US, the continuous enrollment provision  expanded healthcare access to more people. But, alas, sometimes good things must come to an attend, as we return to the churn (no pun intended?) of the status quo of life and Medicaid before the PHE. The continuous enrollment provision was a sort of policy experiment that created new opportunities for understanding how changes could impact communities long term in terms of their health and health care access.  

To ensure that Medicaid beneficiaries and other stakeholders understand this change and coverage loss is minimized, the Centers for Medicare and Medicaid Services (CMS) is working with states and other organizations to inform people about renewing their coverage and exploring other available health insurance options if they no longer qualify for Medicaid or the Children’s Health Insurance Program (CHIP). CMS has developed resources such as an interactive map which provides information on how to renew Medicaid or CHIP coverage in each state. 

For more resources and information on the Medicaid Unwinding, we have included some helpful links for your reference: 

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