(1) Repealed. (2) (a) (I) There is hereby established an advisory committee on hearing in newborn infants for the purpose of reviewing information and statistics gathered during the newborn hearing screening program and providing recommendations to birthing facilities, other health- care institutions, the department, and the public concerning, but not necessarily limited to: (A) Best practices for hearing screening of newborn infants, which practices must be objective and physiologically based and must not include a requirement that the initial newborn hearing screening be performed by an audiologist; and (B) Repealed. (C) Guidelines and best practices for reporting and the means to assure that identified children receive referral for appropriate follow-up services. (II) The advisory committee on hearing in newborn infants must consist of at least nine members. The executive director of the department shall appoint members to the advisory committee. Members appointed to the committee must have training, experience, or interest in the area of hearing loss in children and should include representatives from rural and urban areas of the state, a parent who has a child with hearing loss, a representative of a patient and family support organization, a representative of a hospital, a representative from an organization representing culturally deaf persons, an American sign language expert who has experience in evaluation and intervention of infants and young children, and physicians and audiologists with specific expertise in hearing loss in infants. (III) The members of the advisory committee on hearing in newborn infants shall serve without compensation. (IV) Repealed. (b) Repealed. (3) (a) It is the intent of the general assembly that infants born in the state be screened for hearing loss using procedures recommended by the advisory committee on hearing in newborn infants, created in subsection (2) of this section. Toward that end, every licensed or certified birthing facility shall educate the parents of infants born in such birthing facilities of the importance of screening the hearing of newborn infants and follow-up care. Education is not considered a substitute for the hearing screening described in this section. Screening for hearing loss under this subsection (3)(a) is not required if the parent or legal guardian objects. (b) and (c) Repealed. (4) (a) Repealed. (b) Such rules, if promulgated, shall address those hospitals with a low volume of births, as determined by the state board of health based upon recommendations by the advisory committee on hearing in newborn infants, which may arrange otherwise for newborn infant hearing screening. (5) A physician, nurse, midwife, or other health professional attending a birth outside a hospital or institution shall make every professional effort, as defined by the board, including following up at scheduled postpartum appointments, to ensure that the hearing screening is performed within thirty days of the birth and shall provide information, as established by rule of the department, to parents regarding the importance of the screening. The physician, nurse, midwife, or other health professional who performs the screening shall provide a report of any screening to the parent or guardian of the infant, the primary care provider of the infant, and the department. Screening for hearing loss under this subsection (5) is not required if the parent or legal guardian objects. (6) The department shall encourage the cooperation of county, district, and municipal public health agencies, health-care clinics, school districts, and any other appropriate resources to promote the screening of newborn infants' hearing for those infants born outside a hospital or institution. (7) Upon receipt of sufficient financial resources in the newborn hearing screening cash fund, as determined by the department, to support a new information technology system for the purpose of managing the newborn hearing screening program, the department shall procure an information technology system and promulgate rules in order to implement the system. (8) (a) The state board of health shall promulgate rules that require each of the following with information pertinent to this section to report the results of individual screening to the department: (I) A birthing facility; or (II) Another facility or provider. (b) The rules must include a requirement that the birthing facility include the results of the hearing screening in the electronic medical record of the newborn. The information system required in subsection (7) of this section must allow the results of outpatient rescreenings to be reported to the department and to the parent or guardian of the newborn. (9) (a) The state board of health shall promulgate rules to establish and maintain appropriate follow-up services for newborns at risk of hearing loss. The follow-up services must include identification of newborns at risk for hearing loss, coordination among medical and audiology providers and families, connecting newborns to timely intervention, appropriate referrals to specialists for follow-up and diagnostic testing, and additional duties as determined by the department. (b) The follow-up services must provide the parents with information and resources so that the parents can, in a timely manner, locate appropriate diagnostic and treatment services for the newborn. (c) The department shall also provide appropriate training, on a periodic basis, to birthing facilities and midwives on the department's screening program. (d) The information gathered by the department, other than statistical information and information that the parent or guardian of a newborn allows to be released through the parent's or guardian's informed consent, is confidential. Public access to newborn patient data is limited to data compiled without the newborn's name. Audiologists and other health professionals providing diagnostic services to newborns and their families may access the information, on a newborn-specific basis, for the purpose of entering follow-up information. The information gathered in accordance with this subsection (9)(d) does not restrict the department from performing follow-up services with newborns, their parents or guardians, and health-care providers. (10) (a) The department shall develop and publish materials on its website for use in educating and training on cytomegalovirus, referred to as "CMV", that include the following: (I) The estimated incidence of CMV; (II) The transmission of CMV to pregnant women or women who may become pregnant; (III) Birth defects caused by congenital CMV; (IV) Methods of diagnosing congenital CMV; (V) Available preventive measures to avoid the infection in women who are pregnant or may become pregnant; (VI) Resources and evidence-based treatment as they become available for families of children born with CMV; and (VII) Any federal or state requirements regarding testing for CMV. (b) Subject to available appropriations, the department shall provide technical assistance and training regarding CMV to health-care facilities and health-care providers upon request. (11) The executive director of the department may assess a fee that is sufficient to cover the ongoing direct and indirect costs of all initial newborn hearing screening and follow-up services and to accomplish the other purposes of this section, which fee shall be deposited into the newborn hearing screening cash fund created in section 25-4-1006 (3). Birthing facilities may assess a reasonable fee to be charged the parent or guardian of the newborn to cover the costs of providing services necessary to implement the purposes of this section.
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