§280g–8 Support for patients receiving a positive diagnosis of Down syndrome or other prenatally or postnatally diagnosed conditions

Summary

Allows the federal health officials (through the NIH, CDC, or HRSA) to fund groups to gather, summarize, and share up-to-date, science-based information about Down syndrome and other conditions found before or after birth. It also lets them fund work to set up or improve support services and access to them, such as a phone hotline, better outreach and resource centers for new and expectant parents, more peer-support programs, a registry or network of families and adoption links for newborns with these diagnoses, and training for health care providers who give or explain prenatal test results. The law focuses on funding partnerships between health professional groups and disability advocacy organizations. Defines key words in one line each: Down syndrome — an extra whole or partial copy of chromosome 21; health care provider — someone required to be licensed, registered, or certified to give health care; postnatally diagnosed condition — a health problem identified in the first 12 months after birth; prenatally diagnosed condition — a fetal health problem found by prenatal genetic testing or screening; prenatal test — screening or diagnostic tests given during routine prenatal care based on risk factors. Grantees must give health care providers written, approved, and culturally and linguistically appropriate information for parents about the range of outcomes (physical, developmental, educational, and psychosocial) and contact details for support services. The Government Accountability Office had to report to Congress on current programs’ effectiveness not later than 2 years after October 8, 2008.