Timing of Referrals to a Down Syndrome Parent Group by Race

The Down Syndrome Association of Central Ohio (DSACO) is a nonprofit organization that supports families, promotes community involvement, and encourages lifetime opportunities for people with Down syndrome. METHODS: At DSACO, ongoing efforts for quality improvement included: a Medical Advisory Committee in 2016, the creation of resources groups for Latino families in 2017, for Somali families from 2018 to 2019, and for African American families in fall 2018, presentations at birth hospitals, and close tracking of referrals from hospitals when an infant with Down syndrome is born. In addition, the timing of referrals, either “early” (on the day of birth or the first day after birth) or “late” (2 or more days after birth), were tracked and plotted in p charts. RESULTS: From January 2017 to April 2021, DSACO received 167 referrals; of these, a median of 65% was received “early.” When analyzing all referrals to DSACO, no special cause was seen over the time studied. When evaluating the timing of referral to DSACO by race, referrals for 78% of White families were early (105/135 referrals). In comparison, referrals for 9% of minority families were early (3/32 referrals). CONCLUSIONS: The timing of DSACO referral differed by race. Outreach efforts did not change referral timing but led to a more diverse DSACO membership. Future study is needed to confirm if there is racial disparity in the timing of referrals to resources nationally and to understand the barriers in referring diverse families to Down syndrome nonprofit organizations.