Down Syndrome Association

4623 Wesley Avenue, Suite A
Cincinnati, OH 45212

New Family Support

The Down Syndrome Association of Greater Cincinnati (DSAGC) is utilizing the grant from the Dater Foundation for our New Family Support Services. The DSAGC supports any family within the 12-county Greater Cincinnati area (including Hamilton, Butler, Brown, Warren, Clermont, Adams, Clinton and Highland in Ohio, Boon, Kenton, and Campbell in Kentucky and Dearborn in Indiana) who receives a diagnosis of Down syndrome for the child. Families are connected to the DSAGC through a referral from a medical provider or other organization, a recommendation of another family, or personal outreach (from an internet search, etc.)

Below is information about the families served from June through December 2023.
• A total of 23 families have received support
• 14 families received the diagnosis prenatally and 4 received the diagnosis post birth (5 are unknown/ not specified by the family)

When a family receives a diagnosis of Down syndrome for their child, the DSAGC is available to provide information, support and services that help families prepare for a fulfilling life for their child. The Early Matters Program serves families from the time of diagnosis until the child turns five; focusing on connections, navigating healthcare needs, skill building and transitions to school.

The Early Matters Coordinator meets with new families after they receive a diagnosis to ensure that they receive accurate information about Down syndrome and have a safe space to process the many emotions that they are experiencing. The Coordinator provides a listening ear, encouragement, support and connections. Families receive a more realistic understanding of what life will be like with a child with Down syndrome, both the challenges and the joys. The Coordinator also helps families connect with additional resources and services within the community based on their and their child’s unique needs. All new families receive a Welcome Basket that contains educational materials and books for the parents, developmentally appropriate toys and books for the child and their sibling(s) and baby items.

The Early Matters Coordinator also connects families them to a broader community of support. All new families are provided the opportunity to connect to “Community Groups” through the DSAGC. Families can join groups based on their child’s birth year, where the family lives, and other special interests. These groups create a space for mutual support and encouragement, as well as camaraderie and education. Families may also be directly connected to another family who has experienced a similar situation. This allows families to learn first-hand information and receive emotional support from someone who has walked the same journey, which can reduce feelings of loneliness and isolation.

The DSAGC sends a “new family survey” in January to assess how the Early Matters Program and personal family support has benefited the family. Results from these surveys will be available in February. While our surveys provide helpful quantitative information to assess and strengthen our programs, it is often the individual family stories that truly highlight the impact of the and services we provide.

This year, our Early Matters Coordinator met with two families who received prenatal diagnosis of Down syndrome for their child. The dads were each in very different stages of grief/acceptance related to the diagnosis. One dad was struggling to process the diagnosis and prepare for his child’s birth. The other dad became a source of encouragement and comfort for him and was eager to celebrate his child’s birth. Since the birth of their children, they have maintained this connection and continue to support and encourage one another. While the DSAGC's direct support has a significant impact on families, the connections among families that are fostered through the DSAGC are invaluable. They help lay a foundation for ongoing support throughout the child’s life.
Website: http://www.dsagc.org
Amount: $20,000
Date: July 2023