Children and Youth with Special Health Care Needs Program
Promoting quality care for children and youth with special health care needs in Wisconsin.
The goal of Wisconsin Statute 253.12 is to improve the reporting of birth defects in the State of Wisconsin so that this information can be used to identify birth defects risk factors, decrease the incidence of birth defects, and facilitate service provision to the families of children with birth defects.
There are four main actions mandated by the law. First, the law calls for the establishment of a Council on Birth Defect Prevention and Surveillance. The Council is responsible for making recommendations to the Department of Health Services (DHS) about establishing a birth defects registry, generating rules for reporting birth defects, and facilitating the delivery of early intervention services to children from birth to two years with developmental needs. The law provides for thirteen members to be appointed to the Council, and specifies the organizations or interests they represent.
Second, the law mandates the reporting of birth defects by physicians and by pediatric specialty clinics. Any hospital in the state may also voluntarily report the occurrence of birth defects in children diagnosed or treated in the facility.
Third, the law protects the confidentiality of children born with birth defects (and their families), by eliminating the requirement for reporting the infant or child's name if the parents or guardians refuse to provide written permission to release that information. To further protect confidentiality, DHS may only release the birth defect information that it receives under certain circumstances and for specified reasons. For further details, see Statute253.12 (PDF, 254 KB)
Finally, the law requires DHS to maintain an up-to-date registry of the diagnosis of birth defects in Wisconsin in any child age birth to two years and to develop rules regarding which birth defects must be reported. DHS must specify how the reporting will be accomplished, and must notify the persons required to report about this obligation. In this registry of birth defects, DHS is required to include information that will facilitate all of the following:
- identification of risk factors for birth defects;
- investigation of the incidence, prevalence, and trends of birth defects using epidemiological surveys;
- development of primary preventive strategies to decrease the occurrence of birth defects without increasing abortions; and
- referrals for early intervention and other appropriate services.
Council on Birth Defect Prevention and Surveillance
Wisconsin Statute 253.12 calls for the creation of a Council on Birth Defect Prevention and Surveillance. The members of this Council are appointed by the Secretary of the Department of Health Services and serve for four-year terms. They represent a number of interested parties and contribute a breadth of expertise. The statute specifies that the council will include a pediatric nurse or a nurse with expertise in birth defects, a parent or guardian of a child with a birth defect, a representative of the Council on Developmental Disabilities and representatives of the following organizations:
- DHS (Department of Health Services) Birth to Three Program
- DHS Bureau of Health Information
- DHS Children and Youth with Special Health Care Needs Program
- Local Public Health Department
- Medical College of Wisconsin
- Non-profit organization whose primary purpose is the prevention of birth defects
- State Medical Society of Wisconsin
- University of Wisconsin Medical School
- Wisconsin Chapter of the American Academy of Pediatrics
- Wisconsin Health and Hospital Association
The Council meets quarterly, and is charged to perform four tasks:
- Make recommendations to DHS regarding the establishment of a registry documenting birth defects found in children diagnosed or treated in Wisconsin, and regarding the rules about which birth defects should be reported and the content, format and procedures for submitting a report.
- Coordinate with the Early Intervention Inter-Agency Coordinating Council to facilitate the delivery of early intervention services to children from birth to three with developmental needs, and
- Report every two years about the effectiveness, utilization and progress of the registry.
The Council met for the first time in February 2001. (See Council)