MINUTES OF THE meeting
of the
ASSEMBLY Committee on Health and Human Services
Seventy-First Session
March 12, 2001
The Committee on Health and Human Serviceswas called to order at 1:30 p.m., on Monday, March 12, 2001. Chairman Ellen Koivisto presided in Room 3138 of the Legislative Building, Carson City, Nevada. Exhibit A is the Agenda. Exhibit B is the Guest List. All exhibits are available and on file at the Research Library of the Legislative Counsel Bureau.
COMMITTEE MEMBERS PRESENT:
Mrs. Ellen Koivisto, Chairman
Ms. Kathy McClain, Vice Chairman
Ms. Sharron Angle
Ms. Merle Berman
Ms. Dawn Gibbons
Ms. Sheila Leslie
Mr. Mark Manendo
Ms. Bonnie Parnell
Ms. Debbie Smith
Ms. Sandra Tiffany
Mr. Wendell Williams
COMMITTEE MEMBERS ABSENT:
Mrs. Vivian Freeman
GUEST LEGISLATORS PRESENT:
Senator Terry Care, District 7
STAFF MEMBERS PRESENT:
Marla McDade Williams, Committee Policy Analyst
Darlene Rubin, Committee Secretary
OTHERS PRESENT:
Susan Lloyd, Audiologist
Jean Irwin, Teacher for the deaf
William Rishel
Jana Vickers
Joanne Williams, Nevada Association for the Deaf
Keith Allred
Laura Gomes
Trudy Nunn
Lindsey Nunn
Susan Lund, Teacher for the deaf
Leticia Navarro
Lisa Black, R.N., Director at Large, Nevada Nurses Association
Terry Pittman, Advocate, Northern Nevada Center for Independent Living
Sharon Rogers, Consultant, Nevada Department of Education
Lori Mead
Sean Nebeker, Pacific Care
Bill Welch, President, Nevada Hospital Association
Gary Yup, M.D., Washoe Medical Center
Yvonne Sylva, Administrator, Health Division
Robin Keith, Nevada Rural Hospital Project
Janine Hansen, Lobbyist, Nevada Eagle Forum
Lynn Chapman, Families for Freedom
Guy Perkins, Chief Insurance Administrator, Division of Insurance
From Las Vegas:
Corrine Altman
Natalie Altman
Chairman Koivisto opened the hearing on A.B. 250.
Assembly Bill 250: Requires screening of newborn children and infants for hearing impairments. (BDR 40-155)
Assemblywoman Sheila Leslie, District 27, said Senator Terry Care was present to speak of his interest in the measure. Mrs. Leslie also acknowledged Assemblywoman Gibbons’ interest in A.B. 250. Her name had been inadvertently omitted from the bill and Mrs. Leslie apologized to Mrs. Gibbons for that error.
Mrs. Leslie noted there were some issues with the bill, some amendments had been suggested, some she knew about and others she did not. However, if there were sufficient amendments, with the Chair’s approval she would be glad to work in a subcommittee and go over the bill section by section to develop a quality piece of legislation.
Mrs. Leslie pointed out to the committee there were several key policy areas that would require a decision. She wanted the committee to know of those in advance so they could keep track of the testimony and ask questions of witnesses that would help them as individuals and the group as a committee decide which direction to go.
One of the issues was whether hospitals should be mandated to provide hearing screenings, always with parental consent, before the infants were discharged; or, whether the hospitals should be mandated to offer the screenings to parents; or, whether to leave the system as it was currently; that some babies were screened and some were not.
The second key policy issue to decide was whether insurance policies written in the state of Nevada should be required to pay for the test. That was a contentious issue.
Mrs. Leslie explained her interest in the matter had come about after being approached by the Interagency Coordinating Council who told her infant hearing screening was one of its major legislative issues. The council had been established in 1987 pursuant to the requirements of Public Law 99-457, The Individuals with Disabilities Education Act. Its primary mission was to advise and assist the Department of Human Resources (DHR) in the development and implementation of a statewide system of services for young children with developmental delays or disabilities. The council’s membership included staff from the Department of Education, Head Start, the university system, childcare professionals, parents, and other members, all of whom were selected by the Governor.
Mrs. Leslie said she had also attended a National Conference of State Legislatures (NCSL) health conference where she learned 32 states currently had adopted policies or mandates supporting universal newborn hearing screening, to test a baby’s hearing ability shortly after birth. Each year more than 12,000 (1 in 300) infants in the country were born with a hearing impairment. Of those, 4,000 were profoundly deaf. Hearing impairment was the number one birth defect in the United States. Despite that fact, only 46 percent of babies in the United States were currently screened for hearing impairment at birth. In Nevada, only 16 percent of babies were screened at birth.
Nevada had an unsatisfactory rating in that area by the National Campaign for Hearing Health, with a special note that said the Division of Health was encouraging newborn hearing screening programs but funding and legislative support had been lacking. The only states screening fewer babies than Nevada were California 11.5 percent, and Vermont 11.8 percent. Nevada was 48th in the country. In contrast, Colorado, one of the earliest states to begin screenings in the late 1980s, now screened 99 percent of its newborns. Hawaii was the first state to pass mandatory legislation and they also screened 99 percent, as did Connecticut, Rhode Island, and Wyoming. Several other states were in the 97 to 98 percent range.
Mrs. Leslie advised that among the witnesses testifying were hospital staff and pediatricians who would report on voluntary hearing screening programs that had begun in Nevada, and why they felt the state should do more to expand that effort. Also scheduled were audiologists to answer technical questions about the screening test and its importance. Additionally, teachers of impaired children would explain why it was so important to detect hearing loss as quickly as possible, as well as advocates of the deaf and hearing impaired community who would speak about the many difficulties those children endured as they grew up. Finally, there would be parents and youth who had been affected by hearing impairments. Those individuals would help the committee understand how early screenings had helped their families or could have helped them had they been available.
Mrs. Leslie acknowledged the closed captioning service provided for the meeting on the pull-down screen, as well as the interpreters who would assist the hearing impaired. She asked the committee to ask questions and work to make the legislation the very best it could be, because Nevada’s children deserved no less.
Senator Terry Care, District 7, said he took his hearing for granted, just as did his wife and daughter. He had only a casual interest in hearing impairment issues until a year ago in a conversation with a constituent, Corrine Altman. Mrs. Altman would testify later from Las Vegas. Senator Care said Mrs. Altman’s first child, Anthony, was discovered to have a hearing problem several months after his birth. They were warned that future children might also have the same problem. When daughter Natalie was born, they did not know immediately but learned later of her hearing defect. The Altmans’ three other children had no hearing impairment. It was Mrs. Altman, Senator Care said, who had told him that other states required the newborn testing. He did some follow up on resources in other states and learned the same facts as Mrs. Leslie had reported. It was then he decided to join Assemblywoman Leslie in introducing A.B. 250.
Next to testify was Susan Lloyd, Audiologist, Las Vegas. She reported she had been working with a group of professionals and consumers for the past 18 months to develop universal hearing screening for Nevada’s newborns, and she had been asked to take the lead in providing the committee the facts and figures to support A.B. 250 as much needed legislation. Every day in the United States, 33 babies left the hospital deaf or with some degree of hearing loss. In Nevada, their parents probably would not know it, she said.
Ms. Lloyd gave a slide presentation, written copies of which she made available (Exhibit C). She explained she had obtained data from Nevada Vital Statistics on the number of births since 1979 and estimated the number of babies born each year with hearing loss, based on a conservative 3 per 1,000 prevalence. She had now identified less than 20 percent of those children believed to have some degree of hearing loss. In the past technology to test newborns was not available, but now it was.
Ms. Lloyd reiterated what Mrs. Leslie had noted earlier, hearing impairment was the most common birth defect. The next most common were hyperthyroidism, phenylketonuria (PKU), cystic fibrosis, and hemoglobinopathy (sickle cell disease and other blood disorders), all of which were part of the newborn screening program, yet, hearing was not. If cost was the issue, she reported that the wholesale cost of the screening test for 28,000 Nevada newborns in 1998 was only $12,500.
The cost of not screening newborns was extremely high. Thirty-two other states plus the District of Columbia had chosen to provide that service. It had become the standard of care in the United States and was endorsed by the American Academy of Pediatrics, American Academy of Otolaryngologists, ear, nose and throat doctors, and the Directors of Speech and Hearing Programs in State Health and Welfare Agencies, the American Speech-Language-Hearing Association, and the American Academy of Audiology. Included in Exhibit C was a letter of support from Gerardo D. Rodriguez, M.D., Child Neurology and Neurophysiology Laboratory, which, Ms. Lloyd informed, showed how support for the issue cut across many professions.
Ms. Lloyd added that by not providing the standard of care, insurance providers were exposed to a liability. For example, calculating average liability costs (malpractice lawsuits), and considering the prevalence of hearing loss in newborns, the chance the parents would sue, the chance they would win, the lifetime cost for special education placements and lost earnings, and triple damage for negligence, a $5 million lawsuit could result. A $50 screening test seemed cost effective by comparison.
The state level, Ms. Lloyd said, was where the costs and potential savings came together. Some examples:
· A student with a hearing loss in just one ear had a ten times greater chance of repeating a grade;
· The Clark County School District had a projected enrollment of 231,000 students in 2001. Nationwide the repeat rate was 3 percent, or nearly 7,000 students repeating a grade. Of that amount, according to the Vanderbilt study, mild or unilateral hearing loss might be suspected in 4,600. With a cost per student of over $5,000 a year, the cost would be $23 million for those students to repeat a grade;
· Nationally, the average deaf adult earned 40 to 60 percent of a normal-hearing counterpart;
· In California, about one-third of deaf adults relied on some form of government assistance; and
· The most frequently cited lifetime cost of profound hearing impairment was $1 to $1.5 million in taxable income lost to state budgets.
Ms. Lloyd said it was well known that speech and language development was significantly better when hearing loss was screened at birth and diagnostics were completed by the age of three months. Once the child missed that crucial 0 to 6 month identification period, they were behind. Newborn screening also made up some of the differences attributed to degree of hearing loss.
In conclusion, Ms. Lloyd said the technology was available to screen newborns, it was cost effective relative to other birth disorders and to the alternatives, and it could deliver students to grade school at grade level. It was the standard of care in the United States, and it was the right thing to do for Nevada children.
Next to speak was Jean Irwin, a teacher of the deaf for 20 years, who reported her primary concern was that her students would not be able to keep up with the higher education standards required by the state. Ms. Irwin provided her written testimony (Exhibit D), highlights of which were as follows:
Generally, Ms. Irwin’s students were not identified for hearing loss until they were two years old or more. They often did not have the sign or spoken language of a one year old when they arrived in kindergarten. Some did not know their own names, they pointed to their genitals when they had to go to the bathroom, and that was their only mode of communication. Yet, the legislature and the counties expected that, as a teacher, she would have students who could pass a proficiency exam by the 12th grade, and catch up students already handicapped in the first place. The major problem for her students was literacy. She found she was often explaining to non-deaf people that hearing-impaired people had a difficult time with literacy. A normal person assumed that at least a deaf person could read. Many people did not realize that one did not need eyes to read, one needed ears; because we use a sound-symbol system. Words were sounded out, and if one did not have a good sense of sound, reading was difficult. National statistics showed that students graduating from 12th grade read at about a fourth grade level. Also, every time an educational standard was raised, fewer deaf students would graduate from high school.
She pointed out that there was often talk about lowering the standard for handicapped children to make sure they did not have to pass those proficiency tests, or just lower the parents’ expectations, even inform the parents early on that their children would not have a regular diploma. That was not what educators wanted to do. Rather, educators wanted to increase the knowledge base those students would need to have the tools to be well employed. She said A.B. 250 was the tool to make that happen.
Ms. Irwin added that in 20 years of teaching there had been no computer program, no tool that taught her how to teach reading that ever exceeded early intervention.
Chairman Koivisto asked Ms. Irwin what age level she taught. Ms. Irwin said five-year-old through 11th grade; elementary, junior, and high school.
Assemblywoman Smith thanked Ms. Irwin for her comments. Mrs. Smith advised she served on the Academic Standards Council and it was a constant struggle when they heard about the concerns for special-needs students that they needed to address, and having a tool to make that possible was exciting, because often they did not know where to go with the problem. She invited Ms. Irwin to make a presentation to the council and discuss her concerns with them.
William Rishel, the father of a hearing impaired daughter, now 35, who had been adopted, provided his written testimony (Exhibit E). He related that at the time of adoption the agency informed him and his wife the baby was the most physically perfect child they had ever placed. Soon they noticed her lack of development in speech and inability to make cooing sounds, or turn her head toward them when they spoke. At about six months their pediatrician told them she was simply a placid child. They went to a hearing specialist and were told their daughter was “stone deaf.” They finally found San Francisco Hearing and Speech where she was fitted with a hearing aid. Immediately her whole personality changed. He added that his daughter had been fortunate to have a wonderful teacher for the deaf who had taught her phonics at an early age, and her reading ability developed at a rapid rate and amazingly was able to read at a high school level when she was in the fourth or fifth grade. She had struggled throughout her high school years to gain academic proficiency and keep up with her classmates. Mr. Rishel added that many people equated deafness with not being too bright, which was not the case; if one had a brilliant mind but could not express oneself it was quite a handicap. His daughter graduated from high school, went on to college, and today had her own computer graphics business at Lake Tahoe. She had lost some business because of her speech problems but continued to struggle on.
In closing, Mr. Rishel thanked all those who had helped the hearing impaired and urged the committee to pass A.B. 250.
Jana Vickers, profoundly deaf, was the mother of two girls with mild to moderate hearing loss in one ear and severe hearing loss in the other ear. Mrs. Vickers provided her written testimony (Exhibit F) and an audiogram of familiar sounds as would be heard by the hearing impaired and the profoundly deaf. Her own hearing impairment was diagnosed at age three. She was about five years behind academically and spent most of her school years playing catch up. Because of the high risk in her family, her daughters were tested at three to four months, they were fitted with hearing aids and she enrolled them in early intervention classes. They were doing well. She added that with the discovery of an infant’s hearing loss, the parents can often find simple ways to help their child; like turning off the television or radio, the dishwasher or fans, to help them to concentrate on one sound. Mrs. Vickers stated that early identification of hearing loss was essential because there was a critical learning period for the best language development. She urged the committee’s support and passage of A.B. 250.
Next was Joanne H. Williams, president of the Henderson Chapter of the Nevada Association of the Deaf, who provided copies of her testimony and supporting documentation (Exhibit G). She stated she was deaf and her son was also deaf. She asked the committee’s support of screening of newborn babies with the passage of A.B. 250.
From Las Vegas, Keith Allred, representing the Nevada Early Intervention Interagency Coordinating Council, said last June he wrote a letter to Governor Guinn (Exhibit H) regarding the passage of similar legislation. He read excerpts from that letter for the record:
People across the state as a result of your leadership recognized the state government of Nevada must carefully prioritize expenditures given limited resources. The Nevada Early Intervention Interagency Coordinating Council (ICC) thus seeks to carefully target the most significant challenges of young children with special needs and their families. The Nevada ICC has determined that one largely unheralded need is in the area of auditory screening. There is impressive empirical evidence that early intervention of hearing impairment and subsequent intervention has profound lifelong benefits. This initiative, in this case A.B. 250, will positively impact a significant number of children, their families, and communities throughout Nevada. This endeavor is another opportunity for Nevada to invest in a prevention program which results in long term cost effective dividends.
Mr. Allred read in The Las Vegas Review-Journal that Nevada ranked 46th of the 50 states in the ratio of pediatricians to young children across the state. Thus, there was a desperate need for newborn hearing screening. He added there were probably few if any efforts that would benefit families, communities, and the state the way that A.B. 250 could. He urged support and passage of the bill.
Laura Gomes, Fallon, Nevada, provided her written testimony (Exhibit I). She stated that one of her sons was hearing impaired. Had she and her husband known of his impairment at birth, they would have begun finding help for him immediately. It was not until he was 18 months old that they discovered his problem. Since then it has been a constant “catch up” process for him academically. He had to go to an out-of-state school for two years, which the state paid for, at a tuition cost of more than $18,000, plus the state also paid for transportation and housing. She urged support and passage of A.B. 250.
Assemblywoman Gibbons asked if it was true that if a hearing impaired child was diagnosed at one month as opposed to 14 months, some of the hearing could be retained; that the longer they were without a hearing aid the more hearing was lost. Mrs. Gomes deferred to the professionals for an answer, but did volunteer that she knew of children who were born with hearing but lost it early because they had gone for months without people realizing they were not hearing. They might regain some of that but it would take time.
Trudy Nunn, Reno, provided written testimony (Exhibit J). She reported that her daughter, Lindsey, was born with a profound hearing loss. She was not diagnosed until she was 10 months old. Lindsey had a 90 dB loss in her right ear and no useable hearing in her left ear. She received her first hearing aid at 12 months. In response to Assemblywoman Gibbons’ question, she said if there was no stimulation of what was in the ear the opportunity to develop better speech and language early would be lost. Lindsey began intensive training at the University of Nevada, Reno, at age 15 months. At age three that program was cancelled and Mrs. Gomes had to move, with three children, to the San Francisco Bay area to enroll Lindsey in the Peninsula Oral School for the Deaf. Her husband stayed on in Reno and commuted to see them on weekends. They lived that way for three years, and also spent seven summers in the program. The road was often very bumpy for the family. However, without the expertise and exceptional support from teachers and note takers in school, strong family support, and her daughter’s own dedication and determination, life would have been even more difficult for her daughter. Lindsey was currently enrolled at the University of Nevada and doing very well. Also, she was currently serving as an intern for Assemblywoman Gibbons. In closing, Mrs. Nunn urged support of A.B. 250.
Lindsey Nunn, who provided her written testimony (Exhibit K), talked of how difficult learning was for her. She was in school constantly, never had an opportunity to take an elective because those times were allocated to daily speech therapy. She said she put on her hearing aids the first thing in the morning and didn’t take them off until she went to bed. Lindsey closed by saying how important it was that every child be given the chance to hear and develop language as early as possible. She urged support of A.B. 250.
Assemblyman Manendo expressed the feelings of many when he told Mrs. Nunn how wonderful her daughter was and what a marvelous job she was doing. She was very serious about her work as an intern, and all who came in contact with her appreciated her efforts. Mr. Manendo added that Lindsey was a vital part of the legislative process and her presence was valued.
Next to speak was Susan Lund, a teacher of the deaf and hard of hearing for 27 years. She distributed an excerpt from Volta Voices (Exhibit L) that stated in part:
“We hear with the brain. The ears were just a way in.
Whenever we talk about hearing we really are
talking about brain stimulation.”
The earlier the brain was stimulated the better. Ms. Lund urged support and passage of A.B. 250.
Leticia Navarro, a 14-year-old from McQueen High School, Reno, spoke of her difficulty in being hearing impaired. She provided her written testimony, (Exhibit M), which stated in part that Leticia’s grandmother discovered her deafness at 16 months of age, and even though she received therapy and hearing aids right away she was still behind in school. She still wore hearing aids and felt very frustrated when she did not have them on. She enthusiastically supported newborn screening and urged support for A.B. 250.
Next was Lisa Black, R.N., Director at Large, Nevada Nurses Association, who provided written testimony (Exhibit N), and joined the host of others in support of newborn screening and passage of A.B. 250. She pointed out that newborn and infant hearing loss occurred in four of every 1,000 births, and it was the number one birth defect in the country. Many factors, such as family history, congenital malformations, low birth weight, and so on increased the risk of serious hearing loss. Further, many of the medications administered to newborn infants to treat various infections were ototoxic, meaning toxic to the hearing organs. It was important to note, however, that 50 percent of infants with hearing loss and deafness were completely normal full term babies with no risk factors whatsoever. A brief, painless, and inexpensive screening performed shortly after birth could readily detect affected infants who could then be fitted with hearing aids as early as one month of age, thus avoiding many of the delays in speech, cognitive, and social development that typically occurred when the diagnosis of hearing impairment was delayed until ages two or three when a child normally learned to speak. Ms. Black urged passage of A.B. 250 so that future generations of Nevadans would have the verbal ability to say “thank you.”
Assemblywoman Gibbons asked why hearing loss was so difficult to detect at an early age. Ms. Black replied that the test was based on a brain stem-evoked response, with E.E.G. electrodes to measure the brain stem response to sound. Therefore, it was something that could be detected immediately after birth; if the infant was not hearing then there would be no brain stem activity resulting from sound stimulus.
Terry Pittman testified with the aid of a sign language interpreter. Mr. Pittman was the deaf service advocate for the Northern Nevada Center for Independent Living. His written testimony was provided (Exhibit O). Highlights of his testimony included that he was born deaf and the fact that his mother was a teacher who, once she realized he was deaf, knew she had to find resources to help him. Mr. Pittman held a master’s degree in deaf education and had worked in deaf schools nationwide. He discovered that more than half of incoming preschool or kindergarten children did not have language skills. Deaf children who had not received early intervention were at high risk for:
· Being delayed or having no language development in spoken English, American Sign Language or written English;
· Delayed behavior; and
· Social development.
Although Mr. Pittman wholeheartedly supported A.B. 250, he did object to Section 17, which stated that any child diagnosed as having a hearing loss must be referred to their primary care physician for medical management, treatment, and follow up services. The deaf community wanted to amend that section so that when a child was diagnosed as having a hearing loss, the parents would be referred to a panel of professionals which included an audiologist, teacher of the deaf, speech-language pathologist, and representation from the deaf community to ensure that the parents had a fair share of knowledge before deciding how to deal with the hearing loss.
Assemblywoman Smith remarked that Northern Nevada Center for Independent Living (NNCIL) was in her district and she appreciated all of the very good work they did. She had a machine in her office that allowed her to communicate with their staff, and she had learned to use the relay service because of their staff. She thanked Mr. Pittman and the others from NNCIL for their good work.
Chairman Koivisto advised that due to the scope of the bill and some areas Assemblywoman Leslie pointed out that needed to be addressed, the bill would go to a subcommittee.
Assemblywoman Gibbons asked if four in 1,000 were born hearing impaired, was that a higher percentage than earlier. Assemblywoman Leslie responded those were national statistics and if it was higher it was because more states were doing infant screening now than before.
The next speaker, Sharon Rogers, provided her written testimony (Exhibit P) that stated in part that she had been an early childhood special education consultant for over 20 years in both the Nevada Department of Education and the Department of Human Resources. She said since the 1970s Nevada had been screening newborns for metabolic and genetic disorders that were correctable if detected early. Those simple heel sticks had prevented mental retardation and other disabilities. The technology was now available to identify hearing impairments in infants and it would be negligent to send those babies home with unsuspecting parents, losing valuable months of neuronal language development that could never be recaptured. Ms. Rogers urged support and passage of A.B. 250.
Lori Mead was next to speak. She departed from her written testimony (Exhibit Q) to state that those who dealt with hearing impairment threw around words like “profound sensorineural hearing loss,” “ABRs” and so on. She explained to the committee what “profoundly deaf” meant. Her son Eddie, age eight, who accompanied her, was profoundly deaf. He was diagnosed at 13 months of age. What that meant, she said, was without hearing aids and without any other use of senses, Eddie could not hear a jet engine. There were no outward signs of the disability, children looked normal. If Eddie had been diagnosed when he was born, his speech and language would be much better than it was. Her son had to go to school every day including summer; he had not had a summer vacation since he was 18 months old. He worked very hard. The ten-minute test if given to newborns could change their lives. Mrs. Mead urged support and passage of A.B. 250.
Sean Nebeker, representing Pacific Care, expressed support for A.B. 250 with one amendment that she had already discussed with Assemblywoman Leslie.
Bill Welch, President, Nevada Hospital Association, voiced support for A.B. 250. There were some areas that needed to be clarified and some minor amendments that he had discussed with Assemblywoman Leslie, and he would work with her in the work session.
Dr. Gary Yup, M.D., director of the neonatal intensive care unit at Washoe Medical Center, and a practicing physician in northern Nevada expressed full support for A.B. 250. He believed all newborns needed to be tested. It was difficult to discover hearing loss, without a test, early on, probably not until six months of age, and by then the child was already delayed. If the newborn screening was done the problem could be detected and amplification and other means of communication could be started. Dr. Yup said he had appealed to both Washoe Medical Center and Saint Mary’s Hospital, informed them how important the newborn screen was, and consequently, the program was started and a large percentage of babies born at both facilities were screened. He had also visited insurance companies, and he acknowledged Pacific Care’s support, but many companies were not supportive. Those companies told Dr. Yup they would not cover the testing until it was mandated. Some parents could afford to pay for the test while others could not. Nevertheless, the test was offered to all parents. He felt it was not a successful program unless every newborn was tested. An effective program, he noted, was 95 percent or greater. To date almost 7,000 babies had been tested since mid-1999. Approximately one and one-half to two per 1,000 tested were deaf. The higher risk population was from the neonatal intensive care unit where there were from five to seven per 1,000 births. Still, there was a significant portion of normal newborns with hearing loss, those children had no predisposing factor to suspect they might have a hearing loss.
Assemblywoman Gibbons stated Dr. Yup had made a very valid point. It was very hard to detect hearing loss in the normal course of daily living with a very young child, and that made the legislation so important.
Dr. Yup said that those children who were found impaired later represented a much higher cost to insurance companies, to the state, and everyone else because of the extra time and effort involved and in sending the child to special education. The costs of care might be compared to $3,000 for a normal child to $10,000 for hearing impaired; the savings was there. He noted that people were always questioning where the money would come from, but it was there because it would cost more later. It made sense to pay less up front than more later.
Dr. Yup’s concern was that there was not support from all the insurance companies; they had said they did not care. Even if they had to pay more later, that was later, and then perhaps another insurance company would pay for it, not them. It was very discouraging, he said, when he was trying to show the preventive versus long-term costs.
Dr. Yup believed strongly the testing needed to be done in the hospital, otherwise some babies would be missed. Often new parents were caught up in hectic schedules and if they had to take their child to another facility it might not happen. There were some problems with home births, but that could be dealt with on a different level. By far, the majority of infants were born in the hospital. He said they currently asked for parental consent, but was not sure if it should be an option; it was that important. So many other tests were done for far less common diseases and disorders, and he personally did not feel a hearing screen should be an option, but rather the standard of care. He emphasized how many medical boards and associations proclaimed newborn screening as the standard of care and Nevada was far behind in providing that standard.
He pointed out that in Las Vegas, even in the intensive care nurseries, the highest risk population, newborns were not screened in the hospital. They were referred for hearing afterwards. They might not be tested and there was not good follow up.
Another vital area, Dr. Yup pointed out, was follow up and a follow up program.
Without follow through, the screening was useless. It was important not only to implement hearing screening for all newborns, but also to develop a program to track those children to make sure something was being done about their care and treatment. That was where the savings and effectiveness would be seen.
Chairman Koivisto noted how imponderable it seemed that babies were tested for many less common diseases or disorders and they were not being tested for the most common defect, hearing loss.
Dr. Yup said it was all about cost. Blood tests were a little less costly than the hearing screen. It was not inexpensive. Mrs. Koivisto asked what the cost was. Dr. Yup said the physician’s or hospital’s cost was about $45 to perform the test, but that was not the charge. It was expensive because of the equipment involved.
There were, however, different ways to do screening, and some controversy about which way was best. Some screens were not as effective, there could be more “false positives” in which the child would later be found to be able to hear. He noted that 90 percent of the babies referred were found to truly have a deficit. Also he utilized a follow up program. The screen did not say if they were deaf or not deaf, it identified them as “at risk.” If they did not pass the test, they went through further testing, it was more comprehensive, and it did take a longer time to perform. The child was then referred a special children’s clinic where they saw an audiologist. The hospital also notified the primary care physician that their patient was at risk for a hearing loss. It was then tracked to see whether they passed or not and whether they received intervention; either amplification or further evaluation into the process of why they had a hearing loss.
The next two witnesses, from Las Vegas, were mentioned earlier by Senator Care. First was Corrine Altman, mother of five children; the two oldest, Anthony, age 17, and Natalie, age 15, were severe to profoundly deaf since birth. She applauded the previous speakers and their support for A.B. 250. She and her husband believed that the newborn hearing screen bill was a necessary tool to aid early detection for deafness. Finding out about her children’s deafness at birth would have benefited her family greatly. She pointed out that the first years of a child’s life involved a great deal of listening; when the child was robbed of that valuable time of learning they lost out on that time that could never be replaced. Anthony was 15 months old and Natalie was nine months when they received their hearing aids. They lost valuable learning time and Mrs. Altman felt tremendous guilt for not detecting the problem sooner. While she hesitated to compare her children, Mrs. Altman felt the six months earlier detection had greatly aided Natalie in many areas. One of those areas was speech intelligibility. Communication was essential to survival and it played a huge role in one’s self esteem. The confidence level in that area differed between Anthony and Natalie. Mrs. Altman said her children were enrolled in an auditorial program that required involvement of the whole family. Currently they attended Vo-Tech High School and were fully mainstreamed with note takers. They worked after school and were involved in extra-curricular activities. Both became recipients of the Cochlear implant in 1999 bring them from a 100 dB hearing loss up to a 30 dB loss. As new technology surfaced, such as the Cochlear implant and equipment for infant screening, it was important to stay open minded and alert. In closing, Mrs. Altman urged support and passage of A.B. 250 and said it would help the child, the family, and the community.
Next, Natalie Altman, who provided a written copy of her testimony (Exhibit R), spoke of her life as a hearing impaired youngster and teen, of her many fine and helpful teachers, and also the many things like music, birds singing, the clock ticking, and her parents’ voices she was now able to hear since she received her Cochlear implant. She urged support and passage for A.B. 250.
Chairman Koivisto thanked the witnesses for sharing their stories with the committee.
Yvonne Sylva, Administrator, State Health Division (HD), reported she had met with Assemblywoman Leslie regarding the HD’s concerns in connection with A.B. 250. A review of the bill revealed some of those issues to be housekeeping and others were larger. She noted in one section of the bill, hospitals were required to conduct the newborn hearing screenings while obstetric centers had a choice to either conduct those screenings or to refer the infant and family for testing outside. Further, in Section 9 it was mandated that no infant could be discharged from the hospital without the screening, while in Section 16 it appeared to give a choice in that if that family had no insurance they could be discharged. One of the HD’s recommendations was to define audiologist in the definitions section to insure that the infant was referred to someone qualified to provide those services. Other housekeeping areas were in naming the State Health Division rather than the State Board of Health in sections. Ms. Sylva said she would be happy to work in subcommittee on those recommendations. She added she was very impressed with the testimony that had been given as to the need for early newborn hearing screening, and there was no question but that it was a valuable service. The HD as well as the Division of Health Care Financing and Policy did not include in their budgets funding for the screening, so there would be a need for a fiscal note. The HD estimated the biennial cost for implementing the program would be about $1.6 million, including Medicaid costs as well as Special Children’s Clinic cost.
Vice Chairman McClain asked if newborns were eligible for Nevada Check-Up. Ms. Sylva answered that if a child met the requirements of the program they would be eligible.
Assemblywoman Leslie asked to clarify the cost projected by Ms. Sylva of $1.6 million, which was based on an anticipated greater number of babies being screened and needing services at Special Children’s Clinic. Ms. Sylva concurred, adding, as Dr. Yup also pointed out, many times it was necessary to retest. Infants were only kept in the nursery for 24 hours so the retests were done through referrals to an audiologist at Special Children’s Clinic or another audiologist. Thus, HD would receive an increase in the number of infants needing retesting, and also, because of earlier identification, it was important to have a program in place to track the child’s progress and ensure they were ready to learn when they began school. Mrs. Leslie asked if the fiscal note anticipated being reimbursed from private insurance from those people who had it. Ms. Sylva said, yes, it did, but they had not included the reimbursement HD would receive from Medicaid. But Health Care Financing and Policy had done a separate fiscal note that would show their costs were about $220,000 of General Fund money per year, and about $220,000 of federal Title XIX dollars.
Assemblywoman Gibbons asked why, when doing fiscal notes, could not the savings be taken into consideration. Ms. Sylva said she only followed the rules as to how the funds were calculated, and there was no greater proponent for prevention and costs savings than she.
Next, Robin Keith, President of the Nevada Rural Hospital Project (NRHP), said she generally was very supportive of A.B. 250. Four of Nevada’s rural hospitals did obstetrics and a number of those were already providing the newborn screening. Her main concern was for the administrative and process issues already alluded to, and she pointed out that NRHP was ready and willing to work with the subcommittee to get those things resolved.
Chairman Koivisto called forward those who wished to speak in opposition.
Janine Hansen, State President, Nevada Eagle Forum, said the testimony had been very moving and she was not present to oppose hearing screening, however, she had other concerns about the bill. One was the limitation of access on the private medical information of the families involved in the screening. A.B. 238 of the Seventieth Session provided for the establishment and maintenance of a system for collection and analysis of information concerning birth defects and other adverse birth outcomes and made various changes to Uniform Anatomical Gift Act (BDR 40-72). One of the concerns expressed then and later handled between the Senate and the Assembly was the issue of confidentiality. She noted that as databases grew and access to information was more freely available, those matters became a growing concern for all families involved, because there was a great deal of sensitive personal, medical, and financial information about the child as well as their family in those records. A.B. 250 called for the information to be turned over to the State Department of Health.
Ms. Hansen had traced where the national impetus went from the Centers for Disease Control (CDC) and from the Federal Health and Human Services, and they published a booklet through Health and Human Services (Exhibit S) called Implementing Universal Newborn Hearing Screening Programs. In that booklet they asked for those databases, which were collected for hearing screening, to be combined with other databases the state might have on birth defects, immunization, and other things. As those databases were amassed there was more and more concern for confidential information and the protection of that private medical information. If only statistical information were being extracted to determine how many children were being helped, that would not be a problem. However, when those databases were combined once they went beyond the hospital the problem with confidentiality became a reality. One of the concerns two years ago was that the information be guarded so that it did not go out of Nevada, and that confidential information was not available to the federal government. She read excerpts from new regulations from the Federal Health and Human Services:
In reviewing this information the regulations permit doctors, hospitals, other health services and some business associates to use our personal health records for their marketing and fund raising. Records could be accessed without the patient’s consent for a variety of reasons. The patient’s records can be disclosed without his consent for all the following purposes: public health, research, law enforcement, oversight of health care, judicial and administrative proceedings, treatment, payment and health care operations. Records can be made available to business associates on a contractual basis.
Ms. Hansen pointed out that the above material related to the federal regulations, not state; however, the state needed to safeguard its databases so that confidential information was not released. Her concern was for confidentiality and limitation on access. There needed to be an amendment in the bill to protect that information from going to the federal government.
Chairman Koivisto suggested Ms. Hansen address those points in the subcommittee.
Lynn Chapman, representing Families for Freedom, stated she did not have a problem with the newborn screening but was concerned about page 2, Section 9 of the bill, regarding not discharging a newborn child until that child had undergone hearing screenings. She asked if that meant the child would be held hostage at the hospital. She found a problem with a mandatory provision and felt it should be up to the parents to decide what was best for the child. Ms. Chapman provided Cost Efficiency Of Newborn Hearing Screening (Exhibit T).
Chairman Koivisto noted that concern was one that Assemblywoman Leslie said would be changed in the final bill.
Mrs. Koivisto then appointed Assemblywoman Leslie to chair a subcommittee
comprised of Assemblywomen McClain and Gibbons.
Last to speak was Guy Perkins, Chief Insurance Examiner, Life and Health Section, Division of Insurance, who informed that the division had developed a fiscal note for internal purposes, a one-time only fiscal cost of $61,774.38. That would add a new mandate to the state with the direct health mandates, and those mandates that had to do with requiring treatment from certain specialists would take the mandates up to about 28, which put Nevada in the middle across the country. The division contacted the largest health carrier in the state to try to find out whether they could establish a price in terms of additional insurance cost, if there was an additional insurance cost. The company they contacted did not have enough information to develop that through their actuarial staff.
Mr. Perkins said that while A.B. 250 affected all newborns and infants, it would really only affect those with coverage under insurance policies that either did or did not have PPO networks or HMOs attached to them, or that belonged to a political subdivision self-funded health insurance plan, like the state self-funded plan, or Medicaid. That left quite a number of people who were insured and uninsured in Nevada that would not be affected by the bill. According to the Department of Human Resources, the number of infants born in 1999 was 28,911. In a rough estimate, Mr. Perkins said, 35 percent of those births were children born to people who had coverage that the bill would affect, the number would be 10,120 infants affected by the bill. In checking with a children’s clinic in Las Vegas, and based on the three most common codes for screening infants, the billing cost for those codes was $172. That was the charge the children’s clinic would actually bill an insurance company or Medicaid, however that was not how much they would be paid, because most providers had contracts with PPO networks, HMOs, the state, and so on, at different and lower amounts. Therefore, using that 10,120 infants and multiplying by the billed amount of $172, the cost would be $1,740,442 over a year’s period of time that various insurance companies and Medicaid would have to make up. That did not take into consideration the payer’s administrative and other costs that would be added on.
Mr. Perkins said the division had also tried to find out what costs were involved with those children who were found to have hearing loss and were referred on for additional treatment. The figure agreed upon was 5 to 10 percent of those tested had gone on for additional treatment, however no dollar amount could be ascertained.
Chairman Koivisto asked for questions; there were none, and with no further business to come before the committee, the meeting was adjourned at 3:45 p.m.
RESPECTFULLY SUBMITTED:
Darlene Rubin
Committee Secretary
APPROVED BY:
Assemblywoman Ellen Koivisto, Chairman
DATE: