BILL ANALYSIS SENATE HEALTH AND HUMAN SERVICES COMMITTEE ANALYSIS Senator Diane E. Watson, Chairperson BILL NO: SB 555 AUTHOR: WATSON AMENDED: FEBRUARY 24, 1997 (AS INTRODUCED) HEARING DATE: APRIL 23, 1997 FISCAL: APPROPRIATIONS RECOMMEND:CONSENT CALENDAR CONSULTANT: LaDuke SUBJECT Child health: infant hearing loss. SUMMARY This bill intends to protect children by establishing an Infant Hearing Loss Identification and Intervention Program. ABSTRACT Current law: Requires the Department of Health Services (DHS) to administer various programs relating to infant and child health. This measure would: Require DHS to establish an Infant Hearing Loss Identification and Intervention Program. For purposes of the program DHS would: Coordinate this program statewide in order to screen and identify all newborn infants with hearing impairments and refer those infants to local agencies and services. Develop a pamphlet explaining diagnostic procedures for detecting hearing loss and resources available for hearing infants and children to be distributed to parents and guardians of newborn infants prior to hospital discharge. Produce a standardization of techniques and methodology for identifying hearing loss in infants. Develop a tracking system to ensure that infants identified with or at risk for hearing loss have access to evaluation, follow-up and intervention services. Set up a statewide registry to maintain information on infants identified with hearing loss for follow-up and statistical purposes: Require hospitals and other agencies screening infants for hearing loss to report information to the registry within 48 hours; and Make statistical information available to federal, state and private organizations serving children and adults with disabilities. Create an advisory commission to provide consultation and make recommendations on all aspects of the program. Evaluate and report on cost effectiveness of the program to the Legislature by December 31, 2000. FISCAL IMPACT Undetermined. New costs could be associated with the expansion of services. However, this program has potential for federal financial participation. BACKGROUND AND DISCUSSION In 1982, the Federal Joint Committee on Infant Hearing recommended identification of infants at risk for hearing loss in terms of specific risk factors and suggested follow-up audiologic evaluation until an accurate assessment of hearing could be made. In 1990, this position was modified to expand the list of risk factors and recommend a specific hearing screening protocol. And in 1994 in concert with the national initiative Healthy People 2000 (U.S. Department of Health and Human Services, Public Health Service) which promotes early identification of children with hearing loss, they issued a statement addressing the need to identify all infants with hearing loss. The prevalence of newborn and infant severe and mild hearing loss is estimated to range from 1.5 to 6 per 1,000 births. While the risk factor screening identifies only 50% of infants with significant hearing loss, failure to identify the remaining 50% of children with hearing loss results in diagnosis and intervention at an unacceptably late age. A successful infant hearing program would detect hearing loss that will interfere with normal development of speech and oral language. Because normal hearing is critical for speech and oral language development as early as the first 6 months of life, it is desirable to identify infants with hearing loss before 3 months of age. Various research has shown that children whose hearing loss were identified before or at least by 6 months of age demonstrate larger expressive vocabularies, higher expressive language skills and higher language comprehension scores that those children whose hearing loss were identified after the age of 6 months. In order to achieve this objective, the National Institute for Health (NIH) panel on Early Identification of Hearing Impairment in Infants and Young Children recommends universal screening for hearing impairment prior to 3 months of age. Because of the unique accessibility of almost all infants in the newborn nursery, the NIH consensus panel recommends screening of all newborns both high and low risk, for hearing impairment prior to hospital discharge. The average age of identification of hearing loss in the United States is 2 and 1/2 years, and the hearing loss in 70% of deaf and hard of hearing children are initially identified by parents. Since the first 3 years of life is the most important period for language and communication development, the delayed identification of hearing loss would have adverse impact on language acquisition, academic success, social/emotional development and ultimately career and employment opportunities. The technology for cost effective, noninvasive and quick hearing screening is available today, and the most notable is the Transient Evoked Otoacoustic Emissions. The unique accessibility of almost all infants in newborn nurseries allows for the establishment of a universal hearing screening. Thus, S.B. 555 intends to set forth recommendations of the Federal Joint Committee on Infant Hearing and the March 1993 NIH consensus statement on Early Identification of Hearing Impairment in Infants and Young Children by setting up a program within DHS to detect hearing impairments in newborn infants and providing parents or guardians with educational materials, access to assessment, follow-up and intervention services. COMMENT Concern has arisen that this legislation may produce an unwanted intrusion into the lives of families who have a similar goal, but whose religious perspective leads them to choose spiritual means to deal with such challenges. In addition, it has been noted that the confidentiality language could be more concise. The author has agreed to have language drafted and will amend the bill in the future to address these concerns. Staff recommends that this bill be placed on the Proposed Consent Calendar. POSITIONS Support: California Coalition of Agencies serving the Deaf and Hard of Hearing (Sponsors) Association of Regional Center Agencies American Society for the Deaf California Center for Law and the Deaf California Congress of Parents, Teachers, and Students, Inc. California School of Professional Psychology (CSPP) CAL-ED (California Educators for the Deaf) Christian Science Committee on Publication for Northern California (If Amended) DCARA (Deaf Counseling, Advocacy, and Referral Agency) Deaf Community Services of San Diego, Inc. House Ear Institute (CARE) Children's Auditory Research and Evaluation Center IMPACT (Independently Merging Parent Associations of California - Together for deaf and hard of hearing children. Lawrence M. Siegel, Attorney at Law NorCal Center on Deafness Oppose: None reported. -- END --