Man with Down syndrome wearing orange jacket and navy hat smiles outoors.Among adults aged 18 and older in the United States, estimates suggest that about 125,000 have Down syndrome (DS). It 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 DS use Medicaid compared with other groups.

Researchers at Boston University have 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 examined data from 2011 to 2019 for more than 120,000 Medicaid recipients with DS, 1.2 million people with an intellectual disability, and a randomized selection of 3 million enrollees with no developmental disabilities.

Why It’s Important

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

But with a longer life span come some specific health risks for this population. Most people with DS begin developing Alzheimer’s disease or another form of dementia by age 50. Adults with DS often face diagnoses of other health conditions as well, including obesity and Celiac disease.

The implication, the researchers point out, is 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.”

Highlights of Findings

  • The Medicaid program is critical to adults with DS, 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.)
  • 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 DS. This is the case even though most people with DS 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.

Access the full published study online.