Children and Youth with Special Health Needs (CYSHN)
Programs
- Birth Defects Monitoring and Analysis
- Early Hearing Detection and Intervention
- Follow Along Program
- Longitudinal Follow-up for Newborn Screening Conditions
Related Sites
Contact Info
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. The three webpage above meet these requirements.
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.
Minnesota's Folic Acid Guidelines for the Prevention of Neural Tube Defects (NTDs) (PDF) Folic acid can prevent 50 to 70 percent of NTDs. Since 50% of all pregnancies are unplanned, all women of childbearing age should maintain a proper level of folic acid. Health care providers should follow these recommendations to prevent NTDs as part of routine clinical practice.
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.
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.
Care Coordination in Minnesota is an important function of the patient and family-centered medical home, and care teams can provide optimal coordination and integration of services needed by the child and family. This page provides information on the pediatric care coordination community of practice and training opportunities.
Minnesota Pediatric Mental Health Access is aimed at promoting consultation, training, and support to pediatric primary care and other providers so that children's mental health needs are met.