The Center for Special Children at Vernon Memorial Healthcare La Farge Clinic led the project Support for Mothers and Infants from the Amish and Mennonite (Plain) Communities. The goal was to strengthen statewide capacity to support genetic testing and newborn screening for families in Wisconsin’s growing Plain populations. Recognizing the unique cultural practices and healthcare needs of Amish and Mennonite communities, the project focused on building collaborative relationships and improving access to essential newborn screening services in a culturally respectful and community-driven manner.
The Challenge
Plain communities, most commonly Amish and Mennonite populations, represent a unique and rapidly growing population in Wisconsin and surrounding states. Due to a small founding population and limited intermarriage, these communities have a significantly higher prevalence of genetic disorders, such as metabolic conditions, immune deficiencies, congenital heart disease syndromes, and inherited hearing loss. Many of these conditions can be identified through standard newborn screenings. However, cultural practices, such as declining commercial or government-funded health insurance, limit access to traditional healthcare. Instead, Plain families rely on community-supported care and shared medical expenses. This creates a pressing need for specialized, culturally sensitive services that align with community values.
As the population grows, so too does demand for services. Approximately 70 new patients are added to the Center for Special Children’s caseload each year. The Center is increasingly called upon by midwives and healthcare providers statewide for genetic counseling, newborn screening follow-ups and diagnostic support—stretching its limited resources and underscoring the need for sustainable expansion.
Project Goals
This project aimed to strengthen and expand newborn screening and genetic testing support for Plain communities across Wisconsin by:
Hiring Dedicated Staff: New CSC staff members would coordinate carrier screening, newborn genetic testing and follow-up care while also working to identify gaps in screening resources and building a professional network for care.
Improving Access to Equipment: Essential equipment, such as otoacoustic emission (OAE) meters for hearing screening and pulse oximeters, would be provided to midwives and county health workers serving Plain communities, particularly in underserved regions.
Enhancing Education and Collaboration: A statewide educational conference would be hosted during the second year for licensed midwives and traditional birth attendants. The training would cover newborn screening protocols, specimen collection, updates on genetic testing and offer a space for participants to share feedback on unmet needs.
Building Sustainable Partnerships: Collaborations would be strengthened with key partners including the Wisconsin Newborn Screening Program, Sound Beginnings, SHINE, the Wisconsin Guild of Midwives and the Plain Community Health Consortium to support long-term, culturally respectful care for the Plain community.
Ensuring Long-Term Impact: A sustainable framework for data collection, interagency communication and ongoing evaluation would be established. The team would track the number of newborns screened, document abnormal results and maintain feedback loops with midwives and Plain community members to continuously improve care delivery.
Results
As a result of this award, the Center for Special Children (CSC) added a dedicated staff member to coordinate and enhance resources supporting mothers and infants in Wisconsin’s Plain communities. In the first year, CSC launched a statewide needs assessment to evaluate newborn screening practices and gaps in services. The first phase included outreach to 69 county public health departments and 90 licensed midwives, while the second phase expanded to include 89 traditional birth attendants through a written survey. These efforts led to the creation of a comprehensive Resource Directory featuring 222 contacts, including midwives, birth attendants and public health staff.
In the second year, CSC hosted the Midwifery Care for Mothers and Babies conference, which drew 145 attendees from across Wisconsin, including Plain community members, rural hospital staff, public health professionals, academic partners and midwifery practices. Through this and other events, including CSC Community Days and birth attendant meetings, the project expanded its network to 285 individuals, including 35 new and 22 strengthened partnerships.
Lasting Impact
The project built lasting relationships and expanded statewide collaboration with public health programs, midwives and the Plain community. It created a foundation for ongoing education and culturally sensitive outreach. While equipment distribution was delayed, CSC remains committed to securing future funding. The partnerships and communication networks established will continue to improve care coordination and support for families across Wisconsin’s Plain communities.
