HB 173-SCREENING NEWBORNS FOR HEARING ABILITY CHAIR DYSON announced that the next order of business would be HOUSE BILL NO. 173, "An Act relating to establishing a screening, tracking, and intervention program related to the hearing ability of newborns and infants; providing an exemption to licensure as an audiologist for certain persons performing hearing screening tests; relating to insurance coverage for newborn and infant hearing screening; and providing for an effective date." [Before the committee was the original bill; although there was a proposed committee substitute (CS) in the packets; version 22-LS0003\B, Lauterbach, 4/11/01, it was never adopted. Number 2199 CHAIR DYSON called for an at-ease at 3:55 p.m. The meeting was called back to order at 3:56 p.m. REPRESENTATIVE JOULE stated, as sponsor of the bill, that each year in Alaska approximately 10,000 babies are born. Around 30 to 40 of these children will have some sort of congenital hearing loss. Hearing loss, he said, is more prevalent than any other congenital abnormality for which newborns are routinely screened. Without newborn screening, the average age at which children in the United States are identified with hearing loss is 12 to 25 months - after critical windows of learning have passed. If left undetected, hearing loss can result in lifelong delays in language, cognitive, socio-emotional, and academic development. REPRESENTATIVE JOULE explained that [HB 173] does three things. It requires testing of infants before release from a hospital or within 30 days, except if hospitals have less than 50 births a year or birthing centers refer for screening within 30 days; the development of a reporting and tracking system for newborn and infants; and intervention by providing parents with information through which they could get services if their child has a hearing loss, as well as providing general information about hearing testing of infants. REPRESENTATIVE JOULE explained that in the last several years 32 states have passed legislation requiring newborn hearing screening. Three or more states test on a voluntary basis, and four states are considering legislation this year. He added that there is a new fiscal note for [the bill], which is $90,000 a year, whereas the old fiscal note, was over $500,000. REPRESENTATIVE JOULE offered Amendment 1, which read: Page 5, subsection (g), lines 14-18 DELETE  TAPE 01-44, SIDE B CHAIR DYSON asked, if [the committee] were to accept Representative Joule's amendment, whether the fiscal note would go away. REPRESENTATIVE JOULE responded that the change in the fiscal note is the result of deleting the one section [referred to in the amendment]. CHAIR DYSON asked how much the old fiscal note was. Number 2275 CHRISTINE HESS, Staff to Representative Reggie Joule, Alaska State Legislature, answered that it was almost $600,000. REPRESENTATIVE JOULE explained that if newborns who are otherwise covered by some form of insurance, such as IHS (Indian Health Service) or Denali KidCare, are born in a hospital where there are 50 or more births, they automatically get screened within the first 30 days. The cost that goes away is for those children who were not covered by one form or another of insurance, which is about four to six children yearly. CHAIR DYSON asked if Denali KidCare covers hearing screenings for newborns. MS. HESS answered yes. CHAIR DYSON asked if most of the health care policies that families have in Alaska cover it. MS. HESS responded that several hospitals are screening right now and have reported that they haven't had any problems with the insurance covering it. It has been part of a newborn hearing-screening package. The hearing screening is included with everything that is done now with the newborn. Eventually, she said, it will get its own medical code. However, the bill provides that in certain circumstances the insurance is going to have to provide that as part of the insurance coverage. CHAIR DYSON asked what those circumstances would be. MS. HESS responded that on page 3, lines 9 through 14, it states that if the plan covers services provided to women during pregnancy and childbirth and the dependents of a covered individual, it should include the hearing screening and a follow-up if required. She added that the test is relatively inexpensive, ranging from $45 to $100, and takes about five minutes. CHAIR DYSON asked about the deletion Representative Joule wants to make on page 5. REPRESENTATIVE JOULE stated that the deletion of subsection (g) eliminates a large part of the fiscal note for a relatively small group of children. He said he felt it was more important at this point to get the larger number of kids taken care of and to get the bill moving. In discussing the bill with [committee] members, he said, there is a huge concern about a large fiscal note. CHAIR DYSON asked if most hospitals are already doing this. REPRESENTATIVE JOULE answered no. CHAIR DYSON asked if by deleting [subsection] (g), coverage for the people who fall through that crack would be eliminated. REPRESENTATIVE JOULE said he was correct. MS. HESS stated that from discussions the Department of Health & Social Services (DHSS), a couple of things would happen. She said [DHSS] is not actually sure of the statistical data regarding how many kids are uninsured with Denali KidCare. She said "we're" hoping it's only two to four kids and that some nonprofit groups such as the Lion's Club and Rotary will help. The hospitals will help with the hearing screenings. The other good news, she said, is that ILP (Infant Learning Program) is currently funded for $700,000; therefore, those kids would go on to the ILP waitlist and hopefully get services through that. Number 2028 REPRESENTATIVE WILSON said she is thinking about her area, Wrangell, and asked how much the machines that do the tests cost; she noted that right now Wrangell's hospital does not have anything like that. She also said she is concerned that since the hospital doesn't [have the machine] but has 30 days to make sure the patient gets referred, the patient would have to spend money to fly someplace else. MS. HESS responded that the testing equipment costs anywhere from $9,000 to $15,000. There is a program with the National Hearing Association whereby hospitals can [lease] the equipment while they get started, for free. There is also, she said, a portable device, which can be easily transported. Therefore, a couple of hospitals could get together and share a hearing- screening device. Some rural states are actually doing this, and other states use volunteers to do the testing, which reduces the cost. She added that there is a lot of federal grant money available now. REPRESENTATIVE STEVENS asked, since the old fiscal plan was $600,000 and this fiscal plan is $95,000 and the only difference is two to four children who will not be tested, whether that means it costs $500,000 for two to four children. MS. HESS responded yes, but it is not only for the testing; it is for the intervention, all follow ups, and any hearing devices. Number 1931 KAREN PEARSON, Director of Public Health, Department of Health & Social Services, came forth and explained that the title of the initial bill states that it provides for screening tests and intervention. The three to four children would have been the ones without insurance who needed the full-blown intervention. There is an unknown number of kids, represented by about $200,000 in the original fiscal note, who don't have a payment source for their screening. The remainder for the fiscal note was for the intervention as well as travel for kids who live in a place where screening or intervention is not available. She stated that the current fiscal note is what is needed to put the data system together to do the tracking. Then, she explained, in 2005 the grant for the staff goes away so there is a request for half a staff person to keep the project going. REPRESENTATIVE COGHILL asked how many screenings would be mandated to Alaska right now under this bill. MS. Pearson responded that she does not have that information. REPRESENTATIVE COGHILL stated that he is concerned that places like Wrangell, Kotzebue, or Barrow, where they have health care facilities, will be mandated a $9,000 to $12,000 machine, which seems like a pretty heavy load. He added that this is not going to have a small impact on health care facilities. MS. PEARSON stated that the technology is changing quite rapidly and she thinks the costs will be coming down. She added that there is a lot of interest in this area at the federal level because they understand the impact on the education system and justice system of children not being able to hear. REPRESENTATIVE STEVENS asked what would be accomplished with this equipment that a good family doctor would not be able to tell when examining a baby. Number 1787 HEATHER ALLIO, Parent, came forth and stated that to test for [hearing loss, doctors] originally put a sound into a baby's ear and then measured the amount of sound that came back out. That can tell whether or not a child has a hearing loss, but it can't tell the degree of the hearing loss. A second test can then be performed, which is called an ABR (auditory brainstem response) test or a BAER (brainstem auditory evoked response) test, during which electrodes are put on the head. Sound is admitted into the ear and the brain's response to the sound is tested. CHAIR DYSON asked how that has gone for her family. MS. ALLIO shared her story with the committee: My first son was diagnosed at six months. In fact, [apart from] a family dog that barked and barked and barked and my son never responded, he was not tested at birth. He was then fitted with the hearing aids. Since then - he's three - he [knows] well over 1,500 signs [of sign language]; he's got sounds that he can make that represent words. Had he not had those hearing aids at six months, he would have missed an awful lot of that. My second son, Brady (ph) was tested at one week old, here at the audiologist, and found that he had a loss of some sorts. So we went to Seattle and had the second test done. CHAIR DYSON asked if this is hereditary in her family. MS. ALLIO answered no. She continued stating that most kids are not caught at six months like her son was. Most are not caught until age two; therefore, they have missed out on that two-year window of the ability to hear and the ability to learn sign language. Number 1675 CHAIR DYSON asked Ms. Pearson what [Alaska's] situation would be if parents were unwilling to have their kids tested and if that would be considered a child-in-need-of-aid case. MS. PEARSON responded that there is the potential of being asked what the impact on the child is if there is no religious basis for the choice of medical care. CHAIR DYSON asked if it would be the same situation if it were diagnosed and [the parents] refused to do anything remedial. MS. PEARSON stated that she thinks so. MS. HESS responded that the bill provides for an exemption if the parent objects, for example, due to religious practices. She added that DFYS (Division of Family and Youth Services) could step in if a parent refuses to take appropriate medical procedures. Number 1574 LISA OWENS, Audiologist and Speech Pathologist, testified via teleconference. She explained that there is audiology coverage for almost every area of the state right now, and almost every audiologist has one of the types of systems being used, that can travel. She said she thinks there are three areas right now that have the equipment available; however, they are working on getting grants to cover the costs through state task forces. The second point is that for 50 percent of children there is no known cause for hearing loss. The average age of identification right now, in states that do not have newborn hearing screening, is 18 months to 2 years. In states such as Colorado, Rhode Island, and Hawaii that have been doing newborn hearing screenings for the past six or seven years, the average age of identification is lowered to 3 months of age. She said there are many studies showing that children who are identified by 3 months of age and given hearing aids and early intervention are developing language and communication skills at age-appropriate levels, versus children who are identified at 18 months to 2 years who end up having a reading level of third grade. MS. OWENS explained that a child being identified at 18 months to 2 years hears virtually nothing for those first 18 months or 2 years of life. Information on brain research shows that there is a critical time for brain development, and if children miss that window it is hard for them to ever fully develop those skills. In states that have been doing these programs, kids are going on to preschool and kindergarten and are not requiring the special assistance that they would need if they were identified later in life, which is a huge cost savings. CHAIR DYSON asked, if this passes, whether Ms. Owens would get more business. MS. OWENS answered probably not; she said [her practice] is pretty full as it is. She stated that this would protect kids who are missing out on hearing. CHAIR DYSON asked what percentage of the newborns in [Alaska] are not getting screened now. MS. OWENS responded that right now Providence Hospital is the primary birthing center and is screening all babies, as are Columbia National Regional and the Native hospitals. She said Nome is now screening and Kotzebue is going to start screening within the next month. She said the problem in some of the rural areas is not necessarily the equipment but the training of the hospital staff. Therefore, most of the audiologists are trying to get to those areas to provide appropriate training and help them to get the funding for equipment. CHAIR DYSON asked who pays [the audiologists] to do that. MS. OWENS stated that nobody does; she is doing it on a volunteer basis. Number 1320 REPRESENTATIVE COGHILL asked how the follow-up works now. MS. OWENS explained that typically babies are screened during their first day of life in a hospital. If they fail the screening, the hospital will try to rescreen before they are discharged or they are screened within the first week of life when the parents bring them back to the hospital. Children who fail both screenings, are referred to an audiologist for a full diagnostic test, who would then confirm the [hospital's] diagnostic testing. From that point, they would be referred to the ILP and to the Alaska Early Intervention Hearing Resource Program, which provides parents with sign language and educational support. [HB 173 was held over.]