Legislature(2003 - 2004)
05/06/2003 03:11 PM HES
* first hearing in first committee of referral
= bill was previously heard/scheduled
= bill was previously heard/scheduled
HB 108-SCREENING NEWBORNS FOR HEARING ABILITY Number 0402 CHAIR WILSON announced that the next order of business would be HOUSE BILL NO. 108, "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." Number 0480 PAUL LABOLLE, Staff to Representative Richard Foster, presented HB 108 on behalf of Representative Foster, sponsor, and answered questions from the committee. He read the following sponsor statement into the record: With the discovery that a baby's brain develops more rapidly than previously believed, concern for identification of infant-hearing defects has achieved a new prominence. Over 30 states have passed legislation that provides universal newborn hearing screening. Several other states screen a significant portion of newborns. Approximately 10,000 babies are born in Alaska each year. Out of that number, thirty-to-forty of these newborns are likely to have some type of congenital hearing loss. Even though many hospitals and clinics, within the state, screen high-risk or premature infants for hearing loss, about 50% of newborns with hearing loss are not identified. Most newborns with congenital hearing loss who are not identified at birth will not be identified until 18 months or three years of age. By this time certain critical periods for language and cognitive development have passed. When hearing loss is not detected, it can result in lifelong delays in the development of language, and other cognitive skills. Since hearing loss is more common that any other birth defect and since it has a significant impact on cognitive development, infant screening should be a priority within the state. This bill would insure that newborns are screened, and that a reporting and tracking system is implemented. The Department of Health & Social Services would have the responsibility to effectively plan, establish, monitor, and evaluate both the screening availability and tracking/reporting system. REPRESENTATIVE SEATON asked where the funding for the program will come from. Number 0610 REPRESENTATIVE WOLF said the fiscal note shows the funding sources in FY 04 for $46,000 comes from general funds. He said he does not see any federal receipts in this fiscal note. He said he believes that the state already has programs like this set up since his children have all been tested. When his first son was born prematurely, the hospital tested him for hearing impairment. Number 0626 CHAIR WILSON commented that in Wrangell the hospital has quite a lot of modern technology available, but would not have the equipment to test for hearing impairment for infants. In the case of Wrangell there are only about 12 births per year. It seems likely that the hospital would have to contact the Ketchikan Hospital and request that they send over the device to do the testing. She told the committee it is not a test that is done everywhere, especially in smaller communities. MR. LABOLLE responded that 90 percent of the hospitals in the state already do infant screening; however, small communities without hospitals are not covered. This bill would provide for those births. This bill sets up a tracking program for those children that are screened so that the state can follow them and assure they receive the necessary treatment. CHAIR WILSON commented that the first year's funding is only $46,000. MR. LABOLLE replied that the reason for the small fiscal note is that there is currently a federal grant. That grant will run out in 2005 and that is why there is a large jump in the fiscal note. CHAIR WILSON asked Mr. Labolle if he knows how many children would not be screened if this bill does not pass. MR. LABOLLE replied that Lisa Owens, who is online, could better respond to that questions. Number 0808 SARA GAAR, M.D., Project Director, Alaska Dual Sensory Impairment Services and Special Education Services, testified in support of HB 108. Dr. Gaar told the committee the service is a state and federally funded project that serves children throughout Alaska from birth to 22 years of age who are both deaf and blind or dual-sensory impaired. This service is located at the Special Education Service Agency in Anchorage. She told the committee she strongly supports the newborn hearing screening, intervention, and tracking program. Permanent hearing loss occurs three times in every 1,000 births. In Alaska that is about 30 to 40 children a year being born with permanent hearing loss. DR. GAAR said although the numbers sound low, hearing loss is the most common congenital disorder in the United States. If a child's hearing loss is not detected at birth, it is typically two to three years before the child is identified, as delays in speech and language acquisition become apparent. She said the most significant impact of hearing loss is the delay in language acquisition and academic achievement. These negative impacts occur with children with mild to moderate loss of hearing as well as those with severe and profound range of hearing loss. DR. GAAR said the average deaf child graduates from high school with a language and academic achievement level of a fourth-grade hearing student. The average hard-of-hearing child graduates from high school with reading scores at the fifth-grade level. These are really unacceptable academic achievement levels, and, sadly, they have not shown any signs of improvement for more than 30 years when the data was first collected. Number 0936 DR. GAAR pointed out that these delays can be prevented. Research shows that the critical variable in preventing low achievement is early identification of hearing loss and early intervention, which is a critical factor. That is what newborn screening can provide. The most highly regarded study and much research supports the importance of early identification between zero and six months of age. After six months of age there is a significant difference in terms of potential for the child's language acquisition and academic performance later. DR. GAAR said the cost of newborn screening is only about $25 to $35 per child. The cost of not screening or identifying a child's hearing loss early and subsequently providing the appropriate intervention leaves the child with a lifelong language disadvantage. Without early identification, the chances of that child ever catching up linguistically and academically are significantly reduced. This is such a high price to pay for a situation that can be prevented. Newborn screening can identify those babies at less than six months of age. Waiting until two to three years of age is too late. Dr. Gaar urged the committee to pass HB 108. Number 1025 PHILLIP HOFSTEADER, M.D., Audiologist, North Sound Regional Hospital, testified in support of HB 108 and answered questions from the members. Dr. Hofsteader commented that Dr. Gaar really said much of what he wanted to share with the committee. He told the committee that what Dr. Gaar said is entirely true and that there is statistical data to back that up. The 3-out-of- 1,000-births figure is actually a little low. There is data that says it is actually 4 or 5 out of 1,000 births that are hearing impaired. This is significant. Language development begins in the first two years of life. Not targeting, diagnosing, or intervening with that hearing loss will create delays. The cost-effectiveness of the program is much more successful if there is early intervention at birth. Doctors Vickie Thompson and Albert Mehl did a study in Colorado that confirmed this fact. The program itself is not only morally significant, but cost-effective. Number 1109 REPRESENTATIVE WOLF commented that the previous testifier [Dr. Gaar] said the cost of screening is $25 to $30 per child. The fiscal note shows about 780 children statewide who need to be screened. He said he understands the importance of screening because he has a son who is a special-needs child who is hearing impaired and his son does have a speech problem. REPRESENTATIVE WOLF said he doesn't believe $25 is too much for a family to have pay to have their newborn child screened for hearing loss. It is the cost of having a pizza. He said he would invest that in his child even if he did not have the money. If it was necessary he said he would sell a pint of blood. He also pointed out that there are so many programs nationwide that address these problems. For instance March of Dimes offers assistance. He said he is concerned about having a fiscal note on this bill when the state of Alaska has fiscal problems. He asked when parents are going to assume responsibilities for their children. Number 1228 MR. LABOLLE responded that one provision of the bill, Section 5, page 3, lines 9-23, mandates insurance coverage that must be provided. Under mandatory insurance minimums provided within the bill, the first screening for newborn infant for hearing loss must be covered by the insurance company and subsequent hearing tests that are necessary would also have to be covered by insurance. He told the committee his understanding of the fiscal note is that the primary cost involved deals with setting up the tracking system and administering the program itself, and not so much the expense of testing. CHAIR WILSON said this committee will be looking at the bill with respect to the policy issue. She wants members to focus on whether the state should implement such a program. She said her intent, if the members wish, is to the pass the bill out of committee and send it to the House Finance Committee, where the fiscal issues will be addressed. Number 1296 REPRESENTATIVE SEATON asked if the state tracks children for anything else. MR. LABOLLE responded that he knows there are other mandatory testing policies, but isn't sure if the state tracks them. Number 1314 REPRESENTATIVE SEATON said he is a little concerned about this tracking program and isn't sure what that entails. Unless there is a communicable disease, he said, he is fairly sure the state does not track children. Representative Seaton asked if every newborn child is screened and tracked, whether or not he/she has tested positively for a hearing impairment or not. He said if that is the case, he is not comfortable with that. Number 1380 STEPHANIE BIRCH, Children Health Unit Manager, Maternal Child and Family Health Section, Division of Public Health, Department of Health and Social Services, testified in support of HB 108 and answered questions from the members. She said two of the programs in her section are the newborn hearing screening program and the metabolic screening program. There is a mandated metabolic screening and tracking program for newborns with metabolic disorders. Children are screened for six metabolic disorders, and the division monitors and tracks those kids for follow-up, as well as for a diagnosis for the rest of their lives. It is important to make sure kids with these problems receive medical treatment and have medical homes. It is also important to know the rates at which these occur in the population. As a result of having that information the state and medical providers benefit. MS. BIRCH, in response to the question about the fiscal note, said part of those funds are for the tracking program and intervention services. The children who are identified would be put into an early intervention program that provides specialized resources for hearing loss. The number of children identified in the zero-to-three age grouping has increased. There may be a need for additional resources. The cost of these services is fixed in most communities, but it tends to be more expensive in the Bush communities. Hospitals have accepted the costs and have rolled them into maternity packages, which include the screening portion for newborns. So the $25 to $30 cost is already taken care of either through insurance reimbursement or through rolling the cost into the maternity charges. Number 1522 REPRESENTATIVE SEATON commented that while there is tracking taking place already for children with metabolic problems, the way he reads this bill it appears all children will be tracked whether they have hearing impairment or not. MS. BIRCH responded that the newborn metabolic screening program tracks all children; however, there is a more detailed tracking of children identified with metabolic disorders. This program would have screening on record for all children. There may be a large number of children who will fall into high-risk category and may not be identified at birth. A child can develop hearing loss in the first three years of life because of exposure to illnesses while they were in utero, or because medications they may have received puts them at risk of developing hearing loss. The tracking program would track those children through their third birthday. Number 1590 MR. LABOLLE responded to Representative Seaton's question concerning tracking of all children. He told the committee that only the initial screening is tracked for those found without hearing loss. If, however, the newborn does not fall into that category, then they will not be subject to confirmatory or follow-up testing. Only the initial hearing screening will be sent to the department. REPRESENTATIVE SEATON commented that as he reads the bill, it appears all newborns are tracked, whether they are shown to have hearing loss or not. He asked Mr. Labolle if he would point out the section in the bill where it clarifies that only those newborns with hearing loss will be tracked. MR. LABOLLE responded that every child screened will have his/her screening reported to the department; however, those passing the screening without any signs of hearing disability will not have subsequent screening. Only those children who require subsequent screening are tracked by the department. Number 1667 CHAIR WILSON referred to page 5, lines 17-22, where it talks about the tracking and prevention program. It says "initial hearing screening, follow-up components, and the use and availability of the system of services for newborns and infants who are deaf and hard of hearing and their families." She said her interpretation of this language indicates that the tracking and intervention will be on the infants who are deaf or hard of hearing and their families. MS. BIRCH, in response to Representative Seaton, clarified that all newborns would be screened, and those screenings would be reported to the department. The only children that would be followed up through their third birthday are children who fall into a high-risk category or have questionable signs of hearing loss. There is a list of criteria that the department uses to determine which children need to be followed. Currently the department is tracking about 300 children per year. Number 1773 LISA OWENS, Director, Speech Therapist, and Audiologist, Alaska Speech and Hearing Clinic, testified in support of HB 108. She told the committee she supports the bill because there is a significant difference in language development between children who are identified early and receive early intervention and those that do not. She clarified that when she refers to children who are identified early, she is referring to children who are identified before six months of age. Much research has been done on brain development and studies are showing that critical brain connections are made in the first three years of life. This also includes the hearing sense. If children are deprived of hearing sound for the first few years of life, it doesn't allow their brains to make these important connections. These children may have lifelong problems including auditory processing, language development, academic achievement, and social interaction with peers. Ms. Owens asked the committee to listen to families who are willing to share their stories. If a child is not identified as hearing impaired by two years of age there are significant gaps that may never be closed. She said it would be a shame to have even one child not be identified at birth. The state has quality services available. There are three to four newborns in every 1,000 who are hearing impaired which makes it the most common condition for newborns. She said she knows that Alaska faces some tough financial times, but the cost of educating these kids will be significant if not detected early. Number 1951 MARTIN BEALS, M.D., Pediatrician, American Academy of Pediatricians, testified in support of HB 108, and answered questions from the members. Dr. Beals told the committee that the American Academy of Pediatrics has recommended early screening program with follow-up as this bill suggests for several years now. The academy prefers universal screening versus the high-risk screening which was mentioned by one of the representatives [Representative Wolf] who said his son was screened because of his premature birth. He said that the medical community has been doing high risk screening on children for over 20 years. However, half of the hearing impaired children were being missed by only screening high-risk children. This program is an attempt to screen all children because it is difficult to know who is high risk until the screening is done. Once the infants are screened, it is important to get them properly diagnosed if they have a hearing impairment so they can go on and get some of the benefits that Dr. Gaar talked about earlier. If this bill is passed, a mandate from the state would allow the medical community to equalize some of the services throughout the state. Most pediatricians are behind this program and it has been done for years in Anchorage. Almost every birthing hospital will have the capacity to do this program, but without some statewide coordination there will be big peaks and valleys in what kind of follow-up is going to be done. Early diagnosis leads to the intervention that allows these children to be more advanced in their abilities to take on speech language communication. Dr. Beals told the committee he is very concerned about the Health Insurance Portability and Accountability Act (HIPAA) regulations and confidentiality concerns that come up whenever there is information sharing in situations where there is no support by a legislative body that says this is an important thing to follow-up on. A mandate would allow doctors to communicate better with professionals and hospitals to allow the information to get to the people who need it, basically, the families. Number 2063 CHAIR WILSON commented that this screening would probably save a lot of money, too. DR. BEALS said he believes so, but no insurance company will see this as a money-saving device, in itself. However, there is no question that individual families will see benefits, not just monetarily, but emotionally, socially and other ways, as well. LISA SIMON, Quota International of Fairbanks, testified via teleconference in support of HB 108. She told the committee that Quota International of Fairbanks is a service organization whose main focus is teaching hearing impaired and disadvantaged women and children. Ms. Simon said she supports this bill and would like to see it passed out of committee. Number 2101 SUSAN WALKER testified in support of HB 108. She told the committee that she is a parent of a deaf child. He just turned four years old and was born in Anchorage. He is a happy, healthy child and was diagnosed with a profound hearing loss at six months of age. The reason that her son's hearing loss was diagnosed so early is that he has a twin sister and it was apparent that he had issues with sound and was developing very differently than his sister. She told the committee he is doing very well. He speaks and his language is on or above average for the hearing impaired due to the fact that his hearing loss was caught at such an early age. She said that she really supports HB 108 because as a parent she knows an individual cannot tell if a child is deaf. If they are healthy and happy, and are always on the move, they look like they are responding normally and it is so difficult to say that the child has a hearing loss. For the most part it is invisible; a parent will not see it. A pediatrician will not see it, either, because it is not something detectable by doing a ear check. It is very important that children are screened at birth. Number 2157 MS. WALKER told the committee her son is doing well attending school in the Anchorage School District. He is an oral child and if someone sat down with books with him, they would not realize he has a hearing loss. Number 2185 MARY GRISCO, Executive Director, All Alaska Pediatric Partnership, testified via teleconference in support of HB 108. She told the committee the partners include the Alaska Native Medical Center, the Alaska Native Regional Hospital, Providence Alaska Medical Center, Fairbanks Memorial Hospital, State of Alaska, Valley Hospital, and Elmendorf Medical Group. The organization has been interested in supporting this kind of legislation for several years. As the members may know, many of the hospitals doing the screening have been frustrated because there is no way of tracking or following up on infants identified with hearing loss. She pointed out that the costs that are avoided later are the educational costs down the road. Most school districts in the state can provide information on what it costs to provide services to a child with hearing loss that has not been identified until they enter school, compared to a child like Ms. Walker's who was identified at an early age and can be in the regular classroom with no classroom support. She urge the committee to pass this legislation. Number 2244 MARIE LAVIGNE, Executive Director, Alaska Public Health Association, testified via teleconference in support of HB 108. She told the committee the association is interested in developing sound health policies to benefit all Alaskans. Recognizing the importance of universal screening of all newborns is a critical public health intervention. The Alaska Public Health Association encourages the committee to support HB 108. Ms. Lavigne highlighted public health strategies which included the cost savings of early intervention, and urged the committee not to stop with the screening itself because what happens after the screening is important. Families need to receive appropriate information and services following hearing screening and have their children begin receiving intervention at five to six months of age. It is also critical to develop teams that work with the child to measure the impact of early identification of hearing loss, track the gains made, and areas that need development. Number 2300 MS. LAVIGNE quoted Dr. Marion Downs, a world-renowned pioneer in pediatric audiology, as saying the following: If a child can be identified at birth and receive immediate intervention, then we have done our job. On the other hand, if we do not detect the hearing loss until the child reaches two years of age or later, that child in most cases has lost the opportunity to catch up with others of her own age. Why, with all the tools we have, would we not seize the time to establish a model for screening and early identification? MS. LAVIGNE said those are the challenges before the committee today. HB 108 takes an important step in universal hearing screening which would build on the success of the 60 percent of Alaska's hospitals and birthing centers that are already screening newborns. To assure that all newborns are screened and that a tracking system is setup will assure that Alaska's children who are deaf or hearing impaired will receive the early intervention services they need to fulfill their potential. Number 2333 REPRESENTATIVE WOLF moved to report HB 108 out of committee with individual recommendations and the accompanying fiscal notes. There being no objection, HB 108 was reported from the House Health, Education and Social Services Standing Committee.