Children and Youth with Special Health Needs (CYSHN)
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CYSHN Information and Resources for Providers
Prenatal Trisomy Diagnosis Awareness Act
The Prenatal Trisomy Diagnosis Awareness Act (MS 145.471) was passed on August 1, 2015 that requires educational materials be given to pregnant women following a positive screening test for one of three trisomy conditions. They are: trisomy 13, otherwise known as Patau syndrome; trisomy 18, otherwise known as Edwards syndrome; and trisomy 21, otherwise known as Down syndrome. There are a variety of screening tests now available for prenatal genetic conditions. The sensitivity and specificity of each varies depending on the underlying risk status of the woman being screened. The statute states that any health care practitioner who orders test for a pregnant woman to screen for trisomy conditions shall provide information to the pregnant woman if the screening is positive. The information may be provided in writing or an alternative format (i.e. electronic format is acceptable). The information provided must include: expected physical, developmental, educational & psychosocial outcomes; life expectancy; clinical course; expected intellectual and functional development; treatment options; and contact information for nonprofit organizations. MDH's trisomy fact sheets meet these requirements.
Best practices
- Congenital Adrenal Hyperplasia in the Newborn: Parent Handbook
The handbook is designed for families to provide basic information about Congenital Adrenal Hyperplasia (CAH).
Read, download, or print the CAH children's book, I'm Growing with CAH! This book was created specially for children living with CAH. It explains what the condition is and how to manage it. Great for kids, family members, peers, and teachers. - Minnesota's Folic Acid Guidelines for the Prevention of Neural Tube Defects (NTDs) (PDF)
- MN Early Hearing Detection and Intervention Best Practices Resources
Resources
Centers for Disease Control and Prevention-Birth Defects Information for Providers Contains information about birth defects for healthcare providers. It includes data and statistics, scientific articles, and free educational materials to give patients.
Local Public Health Departments help answer questions for children with special health needs. Local public health assists with finding community services that could benefit children, available financial resources, and well child exams and immunizations. In most local public health departments there is a designated key contact for Birth Defects and Early Hearing Detection and Intervention follow-up.
Minnesota Department of Human Services provides information about programs including Medical Assistance (MA) and MN Health Care Programs, Financial Resources, and TEFRA. The department also has a Provider Help Line for billing and related questions.
National Birth Defects Prevention Month Resource Packet and other Materials
January is Birth Defects Prevention Month. The National Birth Defects Prevention Network develops a theme and resource packet. This packet contains educational and promotional materials, including ideas for sharing the packet, social media guidance, and partner resources.
National Standards for Culturally and Linguistically Appropriate Service in Health and Health Care the National CLAS Standards are intended to advance health equity, improve quality, and help eliminate health care disparities by providing a blueprint for individuals and health care organizations to implement culturally and linguistically appropriate services. Adoption of these Standards will help advance better health and health care in the United States.
MotherToBaby Fact Sheets: A service of the Organization of Teratology Information Specialists (OTIS) offers a series of fact sheets on "teratogens" (substances that are known to interfere with fetal development). The fact sheets answer frequently asked questions about exposure to teratogens during pregnancy.
CDC FREE Materials and Multimedia
Download fact sheets, brochures, and posters in English and Spanish. Some print materials may be ordered for free. Also available are infographics, podcasts, videos, and buttons you can add to websites, blogs or social networking sites. Topics include birth defects, folic acid, alcohol use in pregnancy, diabetes and pregnancy, and preventing infections during pregnancy.
Folic Acid Educational Video in Seven Languages
The Minnesota Department of Health partnered with the Emergency & Community Health Outreach (ECHO) program, the Minnesota Chapter of the March of Dimes, and the Minnesota Folic Acid Council to create a video that includes seven 20-minute folic acid educational video productions. From this site, search "Folic Acid and Prenatal Care" for videos in English, Hmong, Khmer/Cambodian, Lao, Vietnamese, Somali and Spanish
Proof Alliance is a national leader in promoting awareness about the effects of prenatal alcohol exposure and advocacy for individuals and families impacted by fetal alcohol spectrum disorders (FASD). Proof Alliance works to eliminate birth defects caused by alcohol consumption during pregnancy and to improve the quality of life of the individuals and families affected by FASD by providing resources and support.
Region 4 Genetics Collaborative is a collaborative network of families, genetic service providers, newborn screening laboratories, and leaders in public health genetics from Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio and Wisconsin.
Resources Order Form for Early Hearing Detection and Intervention. Use this survey to order: "Children with a Hearing Loss: A Parent Roadmap," "Beginnings Book," and "Transient Hearing Loss Follow-up Postcard."
Environmental Public Health Tracking (EPHT) Program is a Minnesota Department of Health program that works in collaboration with state and federal partners to make environmental hazard, exposure, and health data accessible to the public to inform policy and action, and ultimately to protect public health. Adverse reproductive outcomes, including preterm birth, growth restriction, infant mortality, and infertility are available on a county basis by making queries of the EPHT interactive website.