If a person dear to you has Down syndrome, it's essential for you to be aware of the NC Innovations Waiver. Join us September 16th for the second presentation of the 2023 - 2024 North Carolina Down Syndrome Virtual Speaker Series as Jenna Flynn uses plain language to explain the Innovations Waiver's Registry of Unmet Needs in the state of North Carolina.

Jenna Flynn is a Licensed Clinical Social Worker (LCSW) specializing in IDD/ASD and mental health. Her work history includes NC Local Management Entities- Managed Care Organization (LME-MCOs), TEACCH, and Autism Society of NC

Healthcare experiences of patients with Down syndrome who are Black, African American, of African descent, or of mixed race

Through focus groups, surveys, and interviews with of patients with Down syndrome who are Black, African American, of African desceent, or of mixed race, Krell, Kavita et al. (2023) found that many caregivers and primary care physicians felt that patients with Down syndrome (DS) who are Black, African American, of African descent, or of mixed race receive a lower quality of medical care than their white counterparts with DS.

Caregivers mentioned feeling tired of being reminded by the medical community about their race and wanting acknowledgment that raising a child with DS can be hard at times. Many felt that the medical community's conscious and unconscious racial biases do negatively impact the care of their loved ones with DS. Caregivers desired more race concordant medical providers or, when not possible, medical providers who are willing to learn more about DS and build trusted, longitudinal relationships.

Primary care providers discussed the need for funded resources and support services to effectively care for their patients with DS.

Addressing Inequalities for Black Families in the Down Syndrome Community



Are you or your loved one with Down syndrome struggling to connect, get access, and/or find support?  Join the co-founders of the Black Down Syndrome Association (BDSA), Kelli Caughman and Crystal Lotterberry, as they address the many inequalities present for Black families in the Down syndrome community. BDSA works to connect, collaborate, educate, and engage families with the goal to increase access, support and education. Hear about the latest initiatives and how you can get involved.

Save the Date

• Hispanic Families Social: Sep 30
• Triangle Buddy Walk: Oct 22

The North Carolina Down Syndrome Alliance invites you to take part in the 2023 Triangle Buddy Walk. You have the power to positively impact the lives of people with Down syndrome and their families through your participation. We have planning/fundraising, set-up and event day opportunities! Sign up or help us spread the word!