Image of Rylin Rodgers smiling into the camera wearing a black top against a black background.
Rylin Rodgers is the Director of Public Policy at the Association of University Centers on Disabilities where she works on federal policy and legislative issues that affect people with developmental disabilities and their families. Prior to working at AUCD, Rylin served as the Training Director and Family Leadership Coordinator for the Riley Child Development Center (Indiana’s LEND), and was a founding board member of Family Voices Indiana. Both as a parent and as a professional, Rylin has extensive expertise on topics including special education regulations, public and private health care financing and family/professional partnerships. She earned a BS from the George Mason University in Sociology and is also a LEND Trainee graduate of Indiana.

Why I am Worried

Over 15 years ago my husband and I wrote a weekly column for a small newspaper in our rural Indiana community, the archives of which have been blissfully lost to history. I have been thinking about the week we wrote under the headline “Up All Night,” sharing the reality that it was not just worry about our children’s health needs and treatment that left us sleepless, but the reality that we, like millions of Americans, were losing sleep because we had no realistic option to pay for the health care needs of our family. That reality was not just keeping us up at night; it was crushing us, dominating every aspect of our family’s life. 

I was thinking about that column this week as I was again Up All Night, worried about the millions of Americans whose ability to pay for quality health care is once again in jeopardy. On Thursday, January 30, 2020, the Centers for Medicare & Medicaid Services (CMS) released their plan to give states the option to convert a portion of federal Medicaid funding into block grants. The announcement of Healthy Adult Opportunity was a highly political event, where information about the future of healthcare was shared from the lenses of the current administration.  It is fair to provide some fact checking of the information shared:

Medicaid is funded jointly by the federal government and the states. If you have been following the health care debates that have stemmed from the policy priorities of the Trump administration, you have heard the term block grants before. The newest plan renames the block grant policy, using the term “Healthy Adult Opportunity.” Don’t let the name change confuse you; the policy change is a block grant system.  The guidance is around the population of working age adults.

Why You Should Be Worried

The basics of a block grant are to move from an open-ended structure in which the federal government matches the amounts states spend on Medicaid to a defined, set annual lump sum. The argument for block grants is that it gives states more flexibility on how dollars are spent while creating a way to control federal spending. The argument against block grants is that the shift will lead to decreased funding to provide resources, and that states will be able to create new restrictions on who gets services and what services they get.

The reasons I worry about this change are related to what it means to people:

  • The rhetoric that this plan will not impact  people eligible on the basis of disability does not protect the access to coverage for all people with disabilities.   Many people with disabilities have access to Medicaid for the first time due to Medicaid expansion.
  • A block grant does not increase in response to increased costs, which could be caused by a large outbreak, a crisis such as widespread opioid addiction, or enrollment growth of need due to loss of jobs during an economic downturn;
  • Key provisions to ensure people get the care they need, may no longer be enforced under block grants.
  • The proposed plan lets state keep a portion of money they save – an incentive to spend less on care and who has coverage
  • The new guidance allows states to make changes within listed options AFTER approval, dramatically changing oversight

What We Can Do About It

What is going to happen next? We know that the plan will face court challenges both related to the ability of CMS to make this change without Congressional approval and related to impact of the implementation on states, communities and the public. Lawsuits often feel removed from our direct experience, but they require the engagement of real people who will be impacted and thus have standing. Connecting to and staying informed from advocacy and legal organizations can help you stay informed on a policy that will have a direct impact on your life.

If implemented, block grants will be an option for states. This means decisions about how to move forward will be made state by state. Now is the time to engage with your state leaders and advocacy organizations to start conversations about how best to meet the needs of people eligible for Medicaid in your state. The voices of people with disabilities must be a part of these conversations because you, your lived experiences, your countless “up all nights” is the most valuable voice at the table.

Justin Dart famously called on us to “VOTE as if your life depends on it – Because it DOES!” Medicaid block grants are an illustration of this. The announcement of Healthy Adult Opportunity was a highly political event, where information about the future of healthcare was shared from the lens of the current administration.  This proposed change is the reflection of political policy priorities.  Understanding the positions of elected officials and those running for office and being a voter are the most powerful tools we have to impact policy. The most important thing we can all do is be a 2020 voter and engage others to vote on behalf of the one in five Americans covered by Medicaid.