Understanding Intellectual and Developmental Disabilities
The Role of Medicaid
Developmental Disability Awareness Month: A Time for Recognition and Advocacy
Each March, we observe Developmental Disability (DD) Awareness Month, a time to recognize and celebrate individuals living with intellectual and/or developmental disabilities (IDDs). First started in 1987 by President Ronald Regan, DD Awareness Month activities aim to engage everyone in the community and provide intentional spaces for people to learn about living with an IDD, opportunities to engage in discussions with policymakers, and advocacy for improved public and privately funded IDD services and supports.
My first experience with DD Awareness Month came in 2018 as a newly minted DD Policy Administrator with a state Medicaid agency. My colleague and I crossed the street from our building to the state Capitol building where we attended the DD Awareness and Advocacy Day that was supported by local and state government and advocacy organizations.
Within the halls of that storied Statehouse, we witnessed thousands of individuals with IDDs – their families, friends, neighbors, and providers – and we listened intently as many stood to speak about their lived experiences and how they just try to live life, like everyone else, only in a slightly different way.
More than six years after that first experience, the health care landscape looks significantly different, especially following the passage of H.R. 1 in 2025. Now more than ever, it is important to listen to and learn from people with IDDs about the services and supports that, from their perspective, are the most necessary and beneficial.
Defining IDD and Reliance on Medicaid Services
IDD diagnoses vary but is generally agreed to be a collective of features that may affect an individual’s adaptive behavior, intellectual functioning, and/or physical development. These conditions are present at birth and will typically manifest before a child reaches adulthood. According to estimates published in 2023 from the National Council on Disability, approximately four percent of children and almost two percent of adults in the United States have some form of IDD. This equates to approximately eight million people with a DD living in the United States
Individuals with an IDD diagnosis are disproportionately enrolled on the Medicaid program compared to individuals who do not live with an IDD. The Kaiser Family Foundation (KFF) research suggests that of the more than three million people enrolled in Medicaid who are under age 65 and have an IDD, 82 percent are children under the age of 19. This is largely due to the reliance on the extra services and supports that Medicaid covers for children, but particularly those with an IDD, through Early and Periodic Screening, Diagnostic and Treatment benefits and 1915(c) waivers. Further, individuals with an IDD are more likely to be on a waiting list for home and community-based services provided through waiver programs and are more likely to incur higher care costs funded through Medicaid than those without an IDD.
Making Change Together
Reflecting on that cold March day in 2018, I can’t help but think about the impact it has had on my career trajectory. I’ve had the privilege of working alongside many individuals (and those who support them) who are living with an IDD, and I‘ve learned the importance of collaborating with them to make meaningful change in the Medicaid-funded landscape in ways that speak to them and meet their needs.
In my role at Myers and Stauffer, I have continued that work alongside state clients to end a waitlist for 1915(c) services, promote standardized and equitable assessment practices, and support community-based services that put the person first.
I’m proud that Myers and Stauffer stands not only by individuals with IDDs but also with the state and local government changemakers working with affected individuals and their families to make the best possible policy choices in an ever-tightening budget climate. We recognize the significance of those things and support the phrase used by advocates in the IDD community of “Nothing About Us Without Us.” We stand ready to support state and local government agencies – and those seeking or receiving their services – to craft innovative approaches that provide meaningful and quality Medicaid-funded solutions.
Myers and Stauffer sets itself apart by recognizing that DD awareness should be every day, not just for a few days of the year. Connect with us today to learn more about how Myers and Stauffer’s expert teams help to support individuals with IDDs through our work with local and state governments!
