BILL ANALYSIS SENATE HEALTH COMMITTEE ANALYSIS Senator Elaine K. Alquist, Chair BILL NO: AB 2072 A AUTHOR: Mendoza B AMENDED: June 9, 2010 HEARING DATE: June 23, 2010 2 CONSULTANT: 0 Orr/ 7 2 SUBJECT Hearing screening: resources and services. SUMMARY Requires parents of all newborns and infants diagnosed with a hearing loss to be provided specified information on communication options for children with hearing loss. CHANGES TO EXISTING LAW Existing federal law: Establishes the Individuals with Disabilities Education Act (IDEA) which governs how states and public agencies provide early intervention, special education, and related services to children with disabilities. It addresses the educational needs of children with disabilities from birth to age 21. Part C of the IDEA requires that infants and toddlers with disabilities receive early intervention services from birth through age 3. These services are provided according to an Individualized Family Service Plan (IFSP). Existing state law: Establishes the Children's Medical Services (CMS) Branch within the California Department of Health Care Services Continued--- STAFF ANALYSIS OF ASSEMBLY BILL 2072 (Mendoza) Page 2 (DHCS), which is responsible for implementing a statewide comprehensive Newborn Hearing Screening Program (NHSP). The NHSP helps identify hearing loss in infants and guide families to the appropriate services needed to develop communication skills. Establishes the Newborn and Infant Hearing Screening, Tracking, and Intervention Act to provide early detection of hearing loss in newborns and provide confirmatory tests, multidisciplinary evaluation, and intervention services at the earliest opportunity for children who fail a hearing screening, and their families. The Act requires every general acute care hospital with licensed perinatal services to offer every newborn a hearing screening test for the identification of hearing loss, as specified, and provide written information on the availability of community resources and services for children with hearing loss to the parents of those who are diagnosed with a hearing loss. Establishes the California Early Start Intervention Services Act, commonly known as the Early Start program, under the California Department of Developmental Services (DDS) which provides various early intervention services for infants and toddlers who have disabilities to enhance their development and to minimize the potential for developmental delays. Requires DHCS to establish a system of early hearing detection and intervention centers according to standards by the California Children's Services Program (CCS) that provide technical assistance and consultation to hospitals with hearing screening programs. Each center is responsible for a separate geographic catchment area of the state. Each center maintains a database of all newborns and infants screened in the catchment area, and is required to ensure appropriate follow-up for infants with abnormal hearing screens, including diagnostic evaluation and referral to intervention service programs if necessary. Requires that parents of all newborns and infants diagnosed with a hearing loss be provided written information on the availability of community resources and services for children with hearing loss. Information shall include listings of local and statewide nonprofit deaf and STAFF ANALYSIS OF ASSEMBLY BILL 2072 (Mendoza) Page 3 hard-of-hearing consumer-based organizations, parent support organizations affiliated with deafness, and programs offered through the Department of Social Services (DSS) Office of Deaf Access, DDS, and the California Department of Education (CDE). Establishes the Genetic Disease Testing Fund in the State Treasury, which is used to fund the newborn screening program. The Lanterman Developmental Disabilities Act (AB 846), also known as the Lanterman Act, is gives people with developmental disabilities the right to services and supports that enable them to live a more independent and normal life. The Lanterman Act declares that persons with developmental disabilities have the same legal rights and responsibilities guaranteed all other persons by federal and state constitutions and laws, and charges regional centers with advocacy for, and protection of, these rights. This bill: Requires that parents of newborns and infants diagnosed with hearing loss be provided written or electronic information from the National Institute on Deafness and Other Communication Disorders on American Sign Language, total communication, cued Speech and Listening and Spoken Language communication options for children with hearing loss, including information about deaf and hard-of-hearing organizations, agencies and early intervention centers, and educational programs. Stipulates that this information be provided by an audiologist at a follow up appointment after diagnosis with a hearing loss and also by a local Early Start Program provider upon initial contact with the parents of a newly diagnosed infant. Provides that neither the state, an audiologist, nor Early Start Program provider incur any cost for the implementation of this bill. STAFF ANALYSIS OF ASSEMBLY BILL 2072 (Mendoza) Page 4 FISCAL IMPACT This bill is keyed nonfiscal. BACKGROUND AND DISCUSSION This bill seeks to require that parents of an infant diagnosed with hearing loss be provided with written or electronic information on American Sign Language (ASL), Total Communication, Cued Speech, and Listening and Spoken language. This bill also seeks to clarify that parents should be provided information about deaf and hard-of-hearing organizations, agencies, early intervention centers, and educational programs. The author contends that parents of infants who are newly diagnosed with hearing loss are often unfamiliar with the resources and options that are available to them. Specifically, the author claims that parents of newborns diagnosed with hearing loss are not provided information on all options and modalities for treatment and education of their children. The author claims that over the past fifty years, there have been numerous advances in technology as well as growing awareness about the importance of delivering services to children in a variety of communication modalities to ensure their development and ensure continued access to communication. This bill would assure that parents are given unbiased information and resources so that they can determine the most appropriate treatment for their child. Causes of hearing loss According to the National Center for Health Statistics 36 million (17%) American adults have some degree of hearing loss. About 1 in every 1,000 infants is born deaf. Another 1 in every 1,000 infants has a hearing impairment significant enough to make speaking difficult. According to the National Institute on Deafness and Other Communication Disorders (NIDCD), more than half of all deafness or hearing impairment is believed to have genetic cause(s). About 90 percent of infants who are born deaf are born to hearing parents. Sometimes babies and toddlers who may have STAFF ANALYSIS OF ASSEMBLY BILL 2072 (Mendoza) Page 5 had minimal or no hearing loss at birth show signs of later-onset hearing loss. Additional screening is then especially important, since hearing loss of any kind can affect a child's speech and language development. Sensorineural hearing loss (also called nerve deafness or sensorineural deafness) is loss of hearing resulting from problems in the inner ear, in the nerve from the inner ear to the brain, or in the brain. In sensorineural hearing loss, the damage lies in the inner ear, the acoustic nerve, or both. Most physicians call this condition "nerve deafness." Common causes of sensorineural hearing loss include old age, Menieres disease, ototoxic medications (such as high-dose aspirin or certain strong diuretics), immune disorders, and noise exposure. Conductive hearing loss is due to any condition that interferes with the transmission of sound through the outer and middle ear to the inner ear. This type of hearing loss can be successfully treated in most cases. In central hearing loss, the problem lies in the central nervous system, at some point within the brain. Interpreting speech is a complex task. Some people can hear perfectly well but have trouble interpreting or understanding what is being said. Although information about central hearing loss is accumulating, it remains somewhat a mystery in otology (the medical specialty of ear medicine and surgery). Frequently, a person experiences two or more types of hearing impairment, and this is called mixed hearing loss. This term is used only when both conductive and sensorineural hearing losses are present in the same ear. Newborn screening The California Newborn Hearing Screening Program (NHSP) was established as a result of Assembly Bill 2780, Chapter 310, Statutes of 1998. This law requires the establishment of a comprehensive hearing screening program for the early detection of hearing loss in newborns and infants, with access to diagnostic evaluations and follow-up services, and provisions for data collection and reporting. The Department of Health Care Services (Department), specifically the Children's Medical Services (CMS) Branch, has responsibility for the implementation and oversight of this program. STAFF ANALYSIS OF ASSEMBLY BILL 2072 (Mendoza) Page 6 The NHSP is a comprehensive and coordinated system of early identification, tracking and monitoring of hearing screening, access to diagnostic services, and coordination of appropriate intervention and support services for newborns and infants with hearing loss. The goal of the program is to identify newborns and infants with a hearing loss prior to three months of age and to implement audiological and early intervention services by six months of age. Under the NHSP, all hospitals with licensed perinatal services are required to provide inpatient hearing screening for all newborns, with the parent's permission, prior to hospital discharge. All infants receiving care in an intensive care nursery or neonatal intensive care unit must receive inpatient infant hearing screening services prior to discharge. Inpatient infant hearing screening includes a repeat hearing screen prior to discharge if the newborn or infant did not pass the initial inpatient hearing screening. California has over 550,000 births per year. It is anticipated that the NHSP will result in the identification of an estimated 1,100 newborns and infants born each year with a significant hearing loss who will be linked with appropriate follow-up and early intervention services. Existing law requires the Newborn Screening Program (program) to provide continuous screening services to all California births to protect the health and safety of the newborns affected with preventable heritable disorders. The program mandates that the operation of the program be fully supported from the fees collected, therefore fees may be adjusted as necessary. The total newborn screening program fee is currently $102.75. The fees collected from the hospital of birth are deposited in a special fund called the Genetic Disease Testing Fund (GDTF). The GDTF is used to pay expenses of program operations including costs of supplies, forms, educational materials and contracts with private vendors for laboratory analysis, tracking of positive test results, data processing and fee collection. Hearing Coordination Centers (HCCs) The Hearing Coordination Centers is a concept unique to STAFF ANALYSIS OF ASSEMBLY BILL 2072 (Mendoza) Page 7 California's newborn hearing screening program. The functions of the Centers include: assisting hospitals to develop and implement their screening programs, certifying hospitals to participate as screening sites, monitoring programs of the participating hospitals, assuring that infants with abnormal hearing screenings receive necessary follow-up including rescreening, diagnostic evaluation, treatment, and referral to early intervention service agencies, as appropriate providing information to families and providers so they can more effectively advocate with commercial health plans to access appropriate treatment. Each HCC has a geographic service area for which it is responsible. In states without coordinated tracking systems, up to 50% of the infants who fail the inpatient screen do not receive the necessary services to determine if a hearing loss is present. It is essential that infants who do not pass the screening tests receive prompt evaluation and intervention if appropriate. Otherwise, the benefit and purpose of early screening and identification is lost. Early Start Program In 1998, California passed Assembly Bill 2780, investing approximately six million dollars in the development and implementation of the California Newborn Hearing Screening Program (NHSP). The program established a comprehensive, coordinated system of identifying infants with hearing loss and linking them with appropriate services, including the Individuals with Disabilities Education Improvement Act (IDEA) Part C early intervention services (called Early Start in California). Consequently, the Parentlinks program, funded through the California Endowment and sponsored by the California Coalition of Agencies Serving the Deaf and Hard of Hearing, was established to provide intensive parent-to-parent support to enable parents to become knowledgeable about issues related to hearing loss, to advocate for the rights of their children, and to make informed decisions about raising their children. Parentlinks employed parent mentors who provided families with specific information about hearing loss, and linked families with the local Early Start program. Communication modalities and visual languages STAFF ANALYSIS OF ASSEMBLY BILL 2072 (Mendoza) Page 8 While English and Spanish are spoken languages, American Sign Language is a complete visual language in which the brain processes linguistic information through the eyes. The shape, placement, and movement of the hands, as well as facial expressions and body movements, all play important parts in conveying information. ASL has its own grammar, word order, and sentence structure. Persons using ASL can share feelings, jokes, and complete ideas using ASL. Like any other language, ASL must be learned, and any child can learn ASL as a first language. ASL is not a universal language; each country has its own sign language, and regions have dialects, much like the many languages spoken all over the world. Like any spoken language, ASL is a language with its own unique rules of grammar and syntax and grows and changes over time. According to the National Association of the Deaf (NAD), ASL is used predominantly in the United States and in many parts of Canada. ASL is accepted by many high schools, colleges, and universities in fulfillment of modern and "foreign" language academic degree requirements across the United States. According to a January 2008 policy statement of NAD, deaf infants and children should be given the opportunity to acquire and develop proficiency in ASL as early as possible. NAD takes the position that as a fully accessible visual language, ASL should be made available to every deaf infant, in addition to any assistive technologies that may be used to take advantage of the deaf infant's access to the language(s) used by their families and care providers. According the Clearinghouse on Disabilities and Gifted Education, Total Communication is an approach to deaf education that aims to make use of a number of models of communication such as sign language, oral, auditory, written and visual aids, depending on the particular needs and abilities of the child. Total Communication is a philosophy rather than a methodology. As a result, the implementation of Total Communication philosophy with one child could look entirely different than its implementation with another child. According to the National Cued Speech Association (NCSA), Cued Speech is s system of communication used with and STAFF ANALYSIS OF ASSEMBLY BILL 2072 (Mendoza) Page 9 among deaf or hard of hearing people. NCSA maintains that it is a phonetic-based system which makes traditionally spoken languages accessible by using a small number of handshapes (representing consonants) in different locations near the mouth (representing vowels), as a supplement to lipreading. There are other visual languages as well, including Manually Coded English (MCE), Conceptually Accurate Signed English (CASE). There are also additional visual language building blocks that can assist in communication such as finger spelling and speech (lip) reading. Families who have children with hearing loss often need to learn special skills to help their children learn language. These skills can be used together with hearing aids, cochlear implants, and other devices that help children hear. Cochlear implants and other amplification systems A cochlear implant is a small, complex electronic device that can help to provide a sense of sound to a person who is profoundly deaf or severely hard-of-hearing. According to the Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell), cochlear implants were developed in the 1970s to help profoundly deaf individuals who gained little or no benefit from hearing aids. When hearing is functioning normally, complicated parts of the inner ear convert sound waves in the air into electrical impulses, which are sent to the brain and recognized as sound. A cochlear implant works in a similar manner. When surgically implanted behind the ear, the electronic device is able to bypass damaged hearing cells and stimulate the auditory nerve to restore partial hearing. Cochlear implants provide enhanced sound detection and the potential for greater speech understanding. The implant consists of an external portion that sits behind the ear and a second portion that is surgically placed under the skin. An implant has 1) a microphone, which picks up sound from the environment; 2) a speech processor, which selects and arranges sounds picked up by the microphone; 3) a transmitter and receiver/stimulator, which receive signals from the speech processor and convert them into electric impulses; and 4) an electrode array, STAFF ANALYSIS OF ASSEMBLY BILL 2072 (Mendoza) Page 10 which is a group of electrodes that collects the impulses from the stimulator and sends them to different regions of the auditory nerve. The implant is turned on by an audiologists four to six weeks after surgery, and may require many adjustments thereafter. Cochlear implants, coupled with intensive postimplantation therapy, may help young children to acquire speech, language, and social skills. Most children who receive implants are between two and six years old. Early implantation provides exposure to sounds that can be helpful during the critical period when children learn speech and language skills. It may be recommended that a child with an implant get training with a speech language pathologist, who teaches children how to learn speech and language. This training can help a child understand the new sounds that he or she hears with a cochlear implant. Cochlear implants can cost between $40,000 and $90,000. Many insurance companies and state Medicaid programs help pay for the costs. According to the Food and Drug Administration (FDA), as of April 2009, approximately 188,000 people worldwide have received implants. In the United States, roughly 41,500 adults and 25,500 children have received them. There are risks associated with cochlear implants, and the extent that an implant will lead to full hearing in a child is not predictable. There are many other devices available to assist children and adults with hearing loss. Some of these include hearing aids, FM systems, telephone amplifiers, flashing and vibrating alarms, Infra red listening devices, TTY (Text Telephone or teletypewriter), and more. Not all technological developments have been universally accepted by the deaf community. The cochlear implant inspires both strong support and vehement opposition. Among deaf people, the implants are generally hailed as a boon for individuals who lost their hearing later in life, but their use for deaf children became controversial. The effectiveness and risks of the implants are a major part of the debate, but there is an additional conflict between those who view deafness as a physical impairment and those who see it as a valued part of cultural identity. As cochlear implant surgery has become more common in deaf STAFF ANALYSIS OF ASSEMBLY BILL 2072 (Mendoza) Page 11 children and implants have become more widely used, the emphasis of the debate has changed. The focus now is on the deaf child's exposure to visual language and the type of support and educational services the child receives. Educational achievement of deaf and hard of hearing pupils According to CDE, the deaf students who are most likely to succeed academically are those children who are born to deaf parents. Children born into homes where they have access to the visual language of their families (typically ASL), acquire that language at the same rate that hearing children of hearing parents acquire spoken language. Because they enter school with age-appropriate language skills, they are well prepared to develop literacy skills. However, more than 90 percent of children with hearing loss are born to hearing parents, most of whom have had no previous exposure to deafness. For deaf and hard-of-hearing children who are born to hearing parents, research shows that the most important factors that will lead to their success in school are: age of identification and parent involvement. When a child's hearing loss is identified by six months of age and the child and his parents are enrolled in intensive and appropriate Early Start services aimed at the development of language skills (spoken and/or signed) that child is likely to acquire language skills commensurate with his hearing peers and cognitive abilities. Audiologists scope of practice According to the Academy of Doctors of Audiology, an audiologist is a person who, by virtue of academic degree, clinical training, and license to practice, provides an array of services related to the identification, diagnosis and treatment of persons with auditory and balance disorders, and the prevention of these disorders. Audiologists are independent practitioners who provide services in hospitals, clinics, schools, and private practices. The audiologist is responsible for the evaluation and fitting of amplification devices, including assistive listening devices. The audiologist determines the appropriateness of amplification systems for persons with hearing impairment, evaluates benefit, and provides counseling and training regarding their use. They prescribe, fit, sell, and dispense hearing aids and other STAFF ANALYSIS OF ASSEMBLY BILL 2072 (Mendoza) Page 12 amplification systems. In the NHSP, audiologists are most often the provider that conducts follow up testing of infants who do not pass their initial hearing screening test, and ultimately issue the diagnosis of hearing loss. The CDC includes audiologists among the professional support network of a family of a child with hearing loss, and recommends parents consult them for advice along with other specified health and service providers. Related bills ACR 169 (Carter) of 2009 would proclaim the month of June as Hearing Aid Awareness Month. Pending in the Assembly. Prior legislation AB 1307 (Buchanan) of 2009 would have required the department to considerinclusion in the statewide screening program of conditions recommended by the American College of Medical Genetics (ACMG) or other specified entities. The department would be required to adopt the recommendations within one year of their publication unless the department determines that screening for the recommended conditions is not necessary for advancing newborn health and notifies appropriate committees of the Legislature of that determination. Pending in Senate Appropriations Committee. SB 527 (Steinberg) of 2008, would have required the State Department of Developmental Services to partner with at least one regional center to implement a 2-year Autism Spectrum Disorders Early Screening, Intervention, and Treatment Pilot Program in at least 3 key geographic areas. The pilot program would have established best practices for early screening, diagnosis, referral, and treatment for children with ASD. Vetoed by the Governor, who claimed the provisions of the bill can be accomplished administratively with funding from private, non-state general fund sources. AB 2555 (Torrico) Chapter 245, Statutes of 2008, requires the existing notice of parent rights and procedural safeguards provided to parents or guardians of pupils with disabilities to include information regarding the state special schools for pupils who are deaf, hard of hearing, blind, visually impaired, or deaf-blind. AB 2780 (Gallegos), Chapter 310, Statutes of 1998. The STAFF ANALYSIS OF ASSEMBLY BILL 2072 (Mendoza) Page 13 Health Services Budget Act establishesd the Infant Hearing Screening Program to provide hearing screening tests for children at risk for deafness and a system to provide follow-up and assessment services. AB 1836 (Eastin), Chapter 1126, Statutes of 1994, expanded legislative intent and made other changes related to special education for hard-of-hearing and deaf pupils. States intent that individuals with exceptional needs be offered special assistance programs which take into consideration, for hard-of-hearing or deaf children, the individual's need for a sufficient number of age and language mode peers and for special education teachers who are proficient in the individual pupil's primary language mode. Arguments in support The California Medical Association (CMA) believes it is imperative that patients and their families receive adequate information about a health condition and treatment options in order to make informed decisions about their health care and future treatment. This is especially important for children who have been diagnosed with hearing loss. CMA states that as long as parents are equipped with unbiased, balanced, and accurate information about the communication options available, they can discuss these options with their child's health care team and make the best decision for their child as to how he or she will communicate with the world around them. The California Academy of Audiology claims to be the primary professional caregivers who treat hearing impaired children, and wants to ensure that the parents of all newborns diagnosed with a hearing loss will be provided written information on all communication options for their kids at the earliest appropriate time, so that they make the best intervention decision possible. California Lutheran University writes in support of this bill citing their status as one of the few credentialed program providers that prepare teachers for the deaf. They claim that given the diversity of the deaf population of students, it is imperative that all approaches are presented equally to families. In no way does a presentation to families of all options, settings, services STAFF ANALYSIS OF ASSEMBLY BILL 2072 (Mendoza) Page 14 and approaches denigrate or dismiss any other option, language, cultural group, or approach. The more information a family has, the better and easier their decision will be. Arguments in opposition California Educators of the Deaf believes this bill should specify that information given to parents be vetted by California stakeholders, including educators of the deaf and hard of hearing, deaf community members, and parents. They believe the California Department of Education should be responsible for this. They also contend that the bill is sponsored by directors of private oral education schools, and that the broader deaf education community already recognizes the variety of opportunities for deaf children. The Greater Los Angeles Agency on Deafness believes that providing information to parents of hearing loss is vital, but believes AB 2072 as written is flawed and neglects key components to insure that parents receive thorough and unbiased information. They believe the bill would bypass the state's newborn hearing screening policies and that the bill does not provide for any state accountability or oversight. ASL Rose opposes the bill and does not believe that early identification of deaf newborns automatically yields positive results in the majority of situations, nor that auditory-verbal therapy has benefits for deaf children with residual hearing. PRIOR ACTIONS Assembly Health Committee: 10-4 Assembly Floor: 57-7 COMMENTS 1. Suggested amendments. Both supporters and opposition to this bill agree that any information provided to parents of deaf children should be unbiased, based on scientific facts, and come from a reliable, neutral third-party source. To address this, the committee suggests amendments to require that either DDS or CDE develop or approve the use of standardized, objective pamphlet of information STAFF ANALYSIS OF ASSEMBLY BILL 2072 (Mendoza) Page 15 about communication options for children who are deaf or hard-of-hearing, that is sufficient to allow the child' parents to make an informed decision. This information shall be decided upon by the department in conjunction with a stakeholder panel, comprised of representatives of the various communication options. The cost for developing the pamphlet and conducting the stakeholder panel shall be covered through the development of an additional state fund to accept private donations for this purpose. The provisions of the bill shall only be made operative after sufficient funds have been collected to cover necessary expenses. POSITIONS Support: California Coalition (sponsor) American Federation of State, County and Municipal Employees, AFL-CIO (AFCSME) Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell) Alexander Graham Bell Association for the Deaf and Hard of Hearing, California Chapter (CA AG Bell) California Academy of Audiology (CAA) California Association of Private Special Education Schools (CAPSES) California Association of Private School Organizations (CAPSO) California Department of Education (if amended) California Hospital Association (CHA) California Lutheran University California Medical Association (CMA) Children Specialty Care Coalition Hearing Loss Association of California Modern Deaf Communication National Cued Speech Association West Coast Cued Speech Programs Several Individuals Oppose: American Society for Deaf Children Alliance for Language and Literacy for Deaf Children (ALL for Deaf Children) STAFF ANALYSIS OF ASSEMBLY BILL 2072 (Mendoza) Page 16 ASL Presents ASL Rose Alternative Solutions Center California Association of the Deaf California Deaf Newborn Identification & Advocacy Stakeholder Coalition (CENIAS) California Educators of the Deaf Center On Deaf Inland Empire Community Coalition of Individuals with Individuals with Cochlear Implants Conference of Educational Administrators of Schools and Program for the Deaf, Inc. Convo Communications Deaf and Hard of Hearing Service Center, Inc. Deaf Bilingual Coalition Deaf Children First Deaf Counseling Advocacy & Referral Agency (DCARA) Deaf Hope Deafhood Yoga IMPACT National Asian Deaf Congress National Center on Deafness, California State University Northridge NorCal Services for Deaf and Hard of Hearing Orange County Deaf Equal Access Foundation Parent Links Sacramento Valley Registry of Interpreters for the Deaf Signs for Intelligence LLC Silicon Valley Independent Living Center Special Education Local Plan Area Administrators Tri-County GLAD Western Interpreting Network (WIN) Several individuals -- END --