In the United States, Down syndrome remains the main genetic cause of intellectual disability that qualifies individuals automatically for Supplemental Security Income (SSI) and, in turn, Medicaid. Yet very limited research exists on how adults with Down syndrome use Medicaid compared with other groups.

To help shed more light on this, researchers at Boston University have recently published a study comparing the enrollment patterns, costs, and usage of Medicaid enrollees who have Down syndrome with that of enrollees who have an intellectual disability and those with no developmental disabilities.

The study looks at data from 2011 to 2019 for more than 120,000 Medicaid recipients with Down syndrome, 1.2 million people with an intellectual disability, and a randomized selection of 3 million enrollees with no developmental disabilities.

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Why It’s Important

Individuals with Down syndrome are living longer than ever before. Life expectancy for this population has dramatically increased to a median age of 57 as of 2019, up from age 4 in the 1950s.

But with a longer life span comes some specific health risks for this population. For example, most people with Down syndrome begin developing Alzheimer’s disease or another form of dementia by age 50. And adults with Down syndrome often face diagnoses of other health conditions as well, including obesity and Celiac disease.

This likely means that Medicaid will have to support more individuals with Down syndrome as they live longer.

“The Medicaid system needs to be ready to serve this population with tailored, sensitive, and comprehensive care,” said lead author Eric Rubenstein said in a news release.

Understanding patterns of enrollment and usage, the study’s authors state, will be key to “planning, administering, and adapting health interventions and practices that can improve health for those with Down syndrome and the effectiveness of the Medicaid program.”

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Highlights of Findings

The Medicaid program is critical to adults with Down syndrome, almost universally supporting the health care needs of this entire population nationwide.

Compared with Medicaid enrollees with no developmental disabilities, annual health care costs for adults with Down syndrome on Medicaid are much higher. The median cost for Medicaid recipients with no developmental disabilities is about $6,000 per person, versus more than $26,000 per person per year for enrollees with Down syndrome. (The findings showed no significant differences in these data points between enrollees with Down syndrome and the group with an intellectual disability.)

Findings also highlight that certain ethnic and racial groups of Medicaid enrollees appear to lack the same rates of access to the program’s services as others.

Asian, Black, Native American, and Pacific Islander Medicaid recipients with Down syndrome are all subgroups that had fewer costs and claims per person per year compared with White enrollees with Down syndrome. This is the case even though most people with Down syndrome secure automatic enrollment in Medicaid through SSI. Barriers to care for racial and ethnic groups may be to blame, the research team suggests: “Reckoning with racial disparities in health care for adults with Down syndrome is desperately needed.”

Medicaid enrollees with Down syndrome have significant health care needs that lead to higher costs. For this group, the researchers conclude, improving access to Medicaid will only become more critical.

To learn more, read the full published study online.