Down Syndrome Information
KRS 211.192 requires that expectant and new parents of children with Down Syndrome receive information about educational and support services in Kentucky. Any health facility as defined in KRS 216B.015(13), physician, healthcare provider, nurse midwife, or genetic counselor who renders prenatal care, postnatal care, or genetic counseling must adhere to the requirements of the law. Specifically, providers must, upon receipt of a positive test result for Down Syndrome, provide the expectant or new parent with information from the Cabinet for Health and Family Services. Below is information for parents and healthcare providers related to this diagnosis.
Parent Support Information:
Below are the links to the parent support organizations around the state recognized in the law:
The organizations listed above provide services to parents across the state.
Healthcare Provider Information
Online and written Down Syndrome resources:
The National Center for Prenatal & Postnatal Down Syndrome Resources is based at the University of Kentucky. The resources maintained at the National Center were created with input from professional medical societies and are recognized as the approved resources to be provided a patient receiving a positive test result. Links for the National Center’s resources are provided below.
- Please visit the on-line training website for medical professionals in how to deliver a diagnosis and visit the companion site to obtain family stories for patients; Spanish available.
- Please visit the Lettercase website for written resources provided to patients receiving a Down Syndrome test result. Resources can be viewed on-line through various formats, and hard copies can be requested by medical providers. The parent support organizations throughout the state also have copies for parents. Spanish materials are available.
- Please follow the link to Down Syndrome Pregnancy for free downloadable books for those patients who receive a Down Syndrome diagnosis and intend to continue their pregnancy. This site also provides on-line support.