Evaluating Disparities in the Utilisation of Therapy Services for Children With Down Syndrome Through a Deidentified Medicaid Data Set.
Black children and the youngest kids with Down syndrome receive far fewer therapy sessions, even though strong evidence says therapy brings big gains.
01Research in Context
What this study did
The team looked at Medicaid records for children with Down syndrome. They wanted to see who gets therapy and who does not. They checked race, age, and total cost.
What they found
Black children and other minority children got less therapy. Babies aged 0-2 and teens aged 18-21 also got fewer visits. These groups cost Medicaid less money, showing they simply received fewer services.
How this fits with other research
Derrington et al. (2013) saw the same pattern twelve years earlier. Back then, Black and Hispanic children with Down syndrome stayed in the hospital more and spent more. The new study shows the problem moved from the hospital to therapy rooms.
Titlestad et al. (2019) pooled 27 trials and proved physical therapy works well for Down syndrome. Strong legs and better balance were common gains. So when Byiers et al. (2025) show Black children get fewer therapy visits, we know they are missing care that truly helps.
Barton et al. (2019) tracked kids at school. Students with Down syndrome met about 70% of their therapy goals, no matter how many minutes they got. This sounds like less therapy could be enough, but the Medicaid data still show an unfair gap in access.
Why it matters
You can act right away. Check your own caseload for Black children or very young clients with Down syndrome. If they are not on your list, ask why. Call the family, check referral logs, and help start services. One phone call can open the door to care we know works.
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02At a glance
03Original abstract
BACKGROUND: The objective of this retrospective observational study was to examine disparities in health care utilisation for children with Down syndrome (DS). METHODS: Outpatient Medicaid claims from 2016 to 2018 were used to examine the utilisation of therapy services and annual Medicaid payments for children with DS based on sex, race and age. Multilevel logistic regression was used to analyse the relationship of therapy utilisation with sex, race and age. Gamma-distributed log link model was used to analyse the relationship between annual Medicaid payments and race. RESULTS: The cohort consisted of 17 813 children with DS aged 21 and under. There was no significant difference in utilisation of therapy services between sexes. The likelihood of receiving therapy services decreased for Black or other race individuals compared to White. White individuals had higher annual Medicaid payments than Black or other race individuals. The likelihood of receiving therapy services increased for children 3-17 years old when compared to children aged 0-2 years old. DISCUSSION: There are significant disparities in therapy utilisation for children with DS related to race and age. Increased annual Medicaid payments for White individuals may indicate that they are receiving more outpatient services than the Black/other populations. Decreased therapy utilisation for ages 18-21 years corresponds with the transition to adulthood. The decreased likelihood of receiving therapy services for ages 0-2 is concerning due to the importance of early intervention. Further research is needed to evaluate factors contributing to disparities in outpatient utilisation for children with DS.
Journal of intellectual disability research : JIDR, 2025 · doi:10.1111/jir.13246