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Down Syndrome Information

In the 2013 legislative session, Senate Bill 34 was passed requiring 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, health care 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. The National Center's resources include:

  • on-line training website for medical professionals in how to deliver a diagnosis; it also has a companion site, which provides family stories for patients; Spanish available.
  • written resource to be provided to patients receiving a Down Syndrome test result. It can be viewed on-line through various formats, and a hard copy can be requested by medical providers. The parent support organizations throughout the state also have copies for parents. Spanish materials are available.
  • free, downloadable book as a pdf for those patients who receive a Down Syndrome diagnosis and intend to continue their pregnancy. It also provides on-line support.

 

Last Updated 8/19/2013
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