Hearing Detection & Intervention Program

Transcription

1 Early Hearing Detection & Intervention Program Pennsylvania Department of Health Early Hearing Detection and Intervention (EHDI) Program Report on Screening and Follow-up For 2008 Births Bureau of Family Health Health & Welfare Building, 7th Floor East Wing Division of Newborn Screening & Genetics Harrisburg, Pennsylvania 17120

2 Introduction Each year in the United States, more than 12,000 1 babies are born with a hearing loss, making it the most frequently occurring condition identified through newborn screening. The National Institutes of Health supported research suggests that the most intensive period of speech and language development is during the first three years of life a period when a child s brain is developing and maturing. If a child is not exposed to language during this period due to hearing loss, he or she will have more difficulty developing spoken or signed language and reading skills. In addition, during the early stages of life, the brain builds the nerve pathways necessary for understanding auditory information. For these reasons, identifying hearing loss as early as possible, by the time a child reaches three months of age, enables pursuing treatment options early so that a child can learn to communicate comparably with his or her peers. 2 Several national committees, including the National Institutes of Health, the American Academy of Otolaryngology/Head and Neck Surgery and the American Academy of Pediatrics have recommended that hearing loss in infants be identified and when possible treated prior to six months of age. This recommendation is based on studies that have shown that children identified with hearing loss prior to six months of age have a better chance of developing skills equivalent to their hearing peers by the time they enter kindergarten. Children experiencing late identification may experience irreversible and permanent impairments in speech, language and cognitive abilities. In general, unidentified children with hearing loss have increased difficulties with verbal and non-verbal communication skills, increased behavioral problems, decreased psychosocial well-being and lower educational attainment compared with children with normal hearing. Pennsylvania s Infant Hearing Education, Assessment, Reporting and Referral (IHEARR) Act (Act 89 of 2001) empowers the Department of Health (DOH) to administer a statewide comprehensive newborn hearing screening and follow-up program. This report is submitted to the General Assembly in fulfillment of the reporting requirements found in Section 5(d) (4) of the IHEARR Act. The report covers the results of in- and out-of-hospital screenings for infants born in Follow-up activities for infants referred to DOH for not passing their newborn hearing screening occurred from 2008 through This report also covers the status of ongoing program initiatives undertaken during state fiscal years 2009 and Centers for Disease Control and Prevention website: 2 National Institutes of Health Fact Sheet-Newborn Hearing Screening- September 2006

3 PAGE2 Background Due to the emergence of reliable, affordable technology for Early Hearing Detection and Intervention (EHDI) in the mid-1990 s, DOH began a pilot program with 26 birthing hospitals in The program proved the practicality of early hearing detection as a standard of newborn care throughout the commonwealth. Following the passage of the IHEARR Act in November of 2001, Pennsylvania implemented a statewide universal newborn hearing screening and follow-up program beginning on July 1, The Joint Committee on Infant Hearing s (JCIH) 2007 Position Statement on the Principles and Guidelines for Early Hearing Detection and Intervention Programs states that physiologic measures must be used to screen newborns and infants for hearing loss. Although there are several technologies available to screen newborns, JCIH recommends two technologies: Automated Auditory Brainstem Response and Otoacoustic Emissions. Automated Auditory Brainstem Response (A-ABR) measures the brain s response to sound. Sound stimuli consisting of clicks or tones are administered to the baby through soft earphones, and electrodes placed on the baby s head measure the brain s response. Otoacoustic Emissions (OAE) measures sound waves produced in the inner ear. Sound stimuli consisting of clicks or tones are administered, and a tiny probe placed just inside the baby s ear canal measures the inner ear s response. Both technologies provide a non-invasive recording of physiologic activity of normal auditory functioning. Also, both tests are painless and can be performed in five to ten minutes while the baby is sleeping or lying still. A single procedure or a combination of both procedures may be used for infants in the newborn nursery. For infants in Neonatal Intensive Care Units (NICU), the JCIH recommends A-ABR technology as the only appropriate technology for this population. Since many infants with neural hearing loss are in this target population, the committee recommends this distinction for those high risk infants. Program Objectives The primary objective of the Early Hearing Detection and Intervention (EHDI) program is to provide all newborns with the opportunity to communicate soon after birth. The Commonwealth of Pennsylvania EHDI program: Assures that newborns are screened for hearing loss by one month of age; that those not passing screening receive a diagnostic evaluation by three months of age; and those diagnosed with hearing loss receive appropriate treatment and intervention services by six months of age. Develops and sustains a seamless statewide multidisciplinary system for Early Hearing Detection and Intervention in which families, birthing facilities, midwives, physicians, public health and education agencies work together to: 1. screen, diagnose and link newborns to services;

4 PAGE3 2. support parents and professionals; and, 3. provide educational information about the importance of newborn hearing screening and follow-up care. Provides education, assistance and resources for primary care providers within the context of the Medical Home. A medical home is a health care model focusing on coordination of care for medical and non-medical services to help children and their families achieve their maximum potential. Implements a reporting and early intervention referral and follow-up system that links hearing screening with expert diagnostic services and available Early Intervention services. Screening Hospital Births Newborn hearing screening is one component of a comprehensive approach to the management of early childhood hearing impairment that includes diagnostic services, early intervention, parent education and support. Table 1 Hospital Hearing Screening Performance All of the state s 120 hospitals (in 2008) with functioning birthing departments reported monthly aggregate hearing screening results to the state EHDI program. Generally, initial hearing screenings occur prior to hospital discharge, and newborns who do not pass the initial hearing screenings receive a second screening. Initial screen Follow-up screen Total Hospital Reported Births 3 Initial Screens Percent Initial Screens Newborns Passing Initial Screen Newborns Not Passing Initial Screen Newborns Receiving Follow-up Screen Newborns Passing Follow-up Screen Newborns Not Passing Follow-up Screen Calendar Year , , ,748 7,784 6,795 5, , , ,187 8,166 7,196 5,842 1, , , ,102 8,320 7,507 6,149 1,358 Infants not passing initial hearing screening during their birth admission receive a second screening either before discharge from the hospital or during an outpatient appointment, usually within the first month of life. If an infant does not pass the second screening, the screening provider notifies the state EHDI program and the child s primary care physician (PCP). The PCP coordinates follow-up care by referring the newborn to an audiologist with pediatric diagnostic expertise, to a medical specialist and to Early Intervention services. The physician confirms that intervention services are being delivered, including the parent s 3 Births as reported to the EHDI program by hospitals with a functioning birthing department.

5 PAGE4 selection of a communication method/language and the fitting of amplification devices by six months of age. Out-of-Hospital Births According to the Department of Health s Bureau of Health Statistics and Research, approximately 3,600 to 3,900 babies are born annually in Pennsylvania in out-of-hospital settings. As required by the IHEARR Act, the Department of Health formulated a strategy to screen infants born outside of hospitals. The DOH placed portable hearing screening units with midwifes in areas with high concentrations of out-of-hospital births to screen those infants for hearing loss. In the nine years since the inception of the program, the number of out-of-hospital births continues to increase annually. The population of women choosing to have an out-of-hospital birth experience goes beyond the Amish communities and into the cities and suburban environments. Follow-up and Diagnosis Three Nursing Services Consultants in the Department s Early Hearing Detection and Intervention Program receive referrals (from both hospitals and midwives) for infants who did not pass either the first or second hearing screening. Letters are created through the data system and sent to the family and primary care physicians (PCP) to ensure the PCP and parents are aware that an infant in their practice did not pass a hearing screening and that audiology assessments and evaluations must be completed. The nurses also confirm diagnosis, receipt of treatment and/or Early Intervention services by six months of age. The nurses record all of their contacts with the PCP, audiologist and family in the contact notes area of the Newborn Screening data system. Additionally, the screening results and diagnostic test results are also entered into the data system to complete the child s record. Along with the EHDI Nursing Services Consultants headquartered in Harrisburg, there are Nursing Services Consultants located in the Department s six district offices as well as nurses in the Department s state health centers in almost every county. These nurses are utilized for hard-to-locate families. They will do a home visit or network with their community partners to locate a family and encourage them to continue with the diagnostic process. These Nurses assist the family in getting a second screening, diagnostic exam, health insurance, or transportation if needed. Three-hundred-sixty-two infants born in 2008 were diagnosed with some form of hearing loss. In 2007, 272 were diagnosed, and in 2006, 274 were diagnosed. Approximately 75 percent of all infants not linked to Early Intervention Services receive ongoing medical treatment and monitoring.

6 PAGE5 Table 2 Diagnostic Information The table below summarizes activities for follow-up for 2008 births. The data for 2006 and 2007 births are provided for comparison Diagnostic Information Calendar 2008 Calendar 2007 Calendar 2006 Total Not Passing Hearing Screening 4 1,887 1,383 1,400 Diagnosed With Normal Hearing Diagnosed with Normal hearing before 3 months of age Diagnosed with normal hearing before 6 months of age Diagnosed with normal hearing after 6 months of age Diagnosed with normal hearing age unknown Total diagnosed with normal hearing 1, Diagnosed With Hearing Loss Diagnosed with permanent hearing loss before 3 months of age Diagnosed with permanent hearing loss before 6 months of age Diagnosed with permanent hearing loss after 6 months of age Diagnosed with permanent hearing loss age unknown Total diagnosed with permanent hearing loss Diagnosed with non-permanent conductive hearing loss Total diagnosed with hearing loss No Known Diagnosis Infant expired Parent declined services Moved out of state Unable to contact/unresponsive/unknown Total No Known Diagnosis Program Components Out of Hospital Newborn Hearing Screening Program Evaluation Pennsylvania, which has a large Amish population in which home births are common, is among the 10 states with the highest percentage of home births. Health care practices vary considerably across Amish communities and from family to family. Many Amish use modern medical services, but others turn to alternate forms of treatment. In addition to the Amish, out-of-hospital birth groups in Pennsylvania include fundamentalists, those living in agrarian communities, citizens in rural areas and those seeking complementary health care. In 2003, state EHDI program staff performed an analysis of the distribution and concentration of out-of-hospital births by using statistical data provided by the Department s Bureau of Health Statistics and Research. The data is provided to the DOH through the electronic birth records system. The analysis enabled EHDI program staff to identify areas with the highest geographic concentrations of out-of-hospital births. Portable hearing 4 Information presented includes both hospital and out-of-hospital births.

7 PAGE6 screening machines were purchased and provided to both free-standing birthing centers and midwives in areas with high concentrations of out-of-hospital births. (Pennsylvania defines a birthing center as a facility- - not part of a hospital- -which provides maternity care to childbearing families who do not require hospitalization. A birth center provides a homelike atmosphere for maternity care including prenatal, labor, delivery and postpartum care related to medically uncomplicated pregnancies.) In some cases, the newborn hearing screening equipment is shared by a group of midwives in a geographic area, and this became known as a traveling midwife network. Representatives from the manufacturer of the portable hearing screening equipment and EHDI program staff provide hands-on training to midwife screeners. Each midwife signs an agreement indicating that she has been trained on the use of the equipment, affirming that she will use it only for the purpose of newborn hearing screening and affirming that she agrees to share the equipment (if in a traveling network). Midwives agree to report monthly screening performance data to the state EHDI program and to refer the names of infants not passing rescreening to the EHDI program for follow-up. In the fourth quarter of 2009, the state EHDI program launched a review and evaluation of the Out-of-Hospital Births Hearing Screening Program. The goals established for this project are: Increase the number of out-of-hospital births that are screened for hearing loss to 50 percent or more. Improve the quality of midwife hearing screening and reporting. Establish cooperative relationships between the state EHDI program and leaders in the Amish Community (who tend to have a high number of out of hospital births). To accomplish these goals the following major project activities have been planned and /or undertaken: 1. In the fourth quarter of 2009, state EHDI program staff conducted a survey of the existing midwife screening network. The purpose of the survey was to develop a better understanding of how screening protocols and experiences of the existing program are working. For example some infants are screened at the 2 or 6 week follow-up appointment, not at birth. 2. In April 2010, statistical data on out-of-hospital birth information for calendar year 2008 births was obtained by the state EHDI program from the Bureau of Health Statistics and Research. At the time of this writing, this data is being used by EHDI program staff to identify the highest geographic concentrations of out-of-hospital births that are not being served by the existing screening network. The summary chart below was prepared from the analysis of this data. The chart reveals that more

8 PAGE7 than 75 percent of out-of-hospital births occur in just 11 of Pennsylvania s 67 counties. More detailed information, including the municipal location of each birth, is currently being reviewed to determine the best placement of additional hearing screening equipment. Distribution of 2008 Out of Hospital Births Range of Births Number of Counties Total Number of Births % 0f 2008 Out of Hospital Births 0 Births 6 0 0% 1 to 25 Births % 26 to % 101 to , % Over , % 3. A new screening network was established in Lancaster County in November 2009, another new screening network was established in May 2010 in Monroe County and a new midwife was recruited in May 2010 to screen births in Union County. At the time of this writing, twenty-three networks have been established, and plans are to establish two additional screening networks in the fall of State EHDI program staff is visiting existing midwife screening networks to provide refresher training and technical support. In October 2009, staff visited Birth Care Center in Lancaster County. Two new replacement hearing screening units were delivered to Birth Care, and training was provided. This center has two locations in Lancaster County and delivers about 450 babies per year. There are plans to visit three additional existing screening sites in the summer and fall of Plans are being developed to form a midwife work group by December 1, This group would work with the state EHDI program in an effort to further improve program performance. Professional Development for Physicians and Medical Professionals On-Line EHDI: In mid-2006, a web-based continuing medical education resource for physicians, known as On- Line Early Hearing Detection and Intervention (On-Line EHDI), was introduced. This resource was developed by two physicians at the University of Pittsburgh, under the guidance of the Pennsylvania Chapter of the American Academy of Pediatrics (PA AAP) and the PA Infant Hearing Screening Advisory Committee.

9 PAGE8 Plans are being developed to use On-Line-EHDI to educate pediatric and family practice residents. Two additional case studies will be developed to improve the understanding of 1) the importance of EHDI; 2) how hearing loss is detected, diagnosed and treated; 3) the risk factors associated with hearing loss; and 4) the long-term impact of hearing loss. These case studies will be developed using real-life scenarios and will include the use of practice tools and resources for families. Additionally, two presentations will be made next year to pediatric and family practice resident groups, using the ONLI-EHDI case studies as an interactive educational tool. The new cases were completed in October Now each case study stands alone and can be completed individually for 0.5 CME for no charge. EHDI Website: In September 2008, PA AAP presented DOH and the Infant Hearing Screening Advisory Committee with a proposal to develop a website for families, primary care physicians, birth hospitals and audiologists in Pennsylvania to provide information and resources on early hearing detection and intervention. Both DOH and the Advisory Committee approved the proposal, and PA AAP and DOH have moved forward with development of the website. It was launched in June 2010 at Hospital Communication and Technical Assistance: During the past year, PA AAP also provided additional technical assistance, such as technical information to a hospital on newborn hearing screening equipment/costs to consider when purchasing equipment in circumstances in which the hospital does not have a staff audiologist. State EHDI Program staff will work with representatives from the PA AAP to develop and implement an enhanced technical assistance program. Hospitals with less than 90 percent of the hospital s births are being screened for hearing loss; and, that newborns who do not pass an initial hearing screening will be offered additional assistance with screening and reporting. For calendar year 2008 births, the 120 Pennsylvania hospitals at that time with newborn hearing screening programs reported that 97.2 percent of live births completed newborn hearing screening. Preliminary data released by the Centers for Disease Control and Prevention indicates that, for 2008 births, 96.8 percent of live births nationwide completed newborn hearing screening. Currently, the 106 Pennsylvania hospitals with a newborn hearing screening program submit a monthly report to the state EHDI program on aggregate newborn hearing screening performance. This report details the number of live births, the number of newborns screened before hospital discharge, the number of newborns who did not receive

10 PAGE9 an initial hearing screening, the number of families who refused to have their newborn screened, the number of newborns who did not pass the initial screening, the number of newborns who received a second screening and the number of newborns who did not pass the second screening. Additionally, hospitals are required to submit a referral form to the state EHDI program for each individual newborn who does not pass the second hearing screening. Hospital newborn hearing screening reports will be reviewed monthly by state EHDI program staff to identify hospitals that report a screening rate below 90 percent. Additional data on individual referrals for these hospitals will also be gathered and reviewed. From this group of hospitals, state EHDI staff will prioritize those in need of technical assistance, and they will be offered assistance under the following plan: 1. The hospital shall collaborate with DOH EHDI staff and technical experts designated by PA AAP in a Quality Assurance Review of the hospital s Newborn Hearing Screening Program. This Quality Assurance Review will consist of two or more teleconferences and at least one onsite visit to the hospital. During the teleconferences and visit, the hospital s newborn hearing screening procedures and protocols will be reviewed and discussed. Suggestions for change and tip sheets with examples of successful protocols will be shared with the hospital staff. The hospital shall collaborate with the review team and hospital staff to address any areas of concern identified during the Quality Assurance Review. 2. Efforts will be made during the teleconferences and on site visits to identify and address reasons for newborn hearing screening rates being below 90 percent. 3. The hospital shall provide the parents or guardians of the newborn with the following information: a. The results of the screening should be conveyed verbally and in writing to the parents/guardians using a standard notification form prepared explicitly for this purpose. b. If the newborn did not pass the initial screening, the hospital shall inform the parents of the importance of obtaining a second screening as soon as possible and shall schedule a return appointment for a second screening during the period from 14 days to 30 days following the infant s date of birth. c. If the initial screening was not completed due to the infant being transferred to a neonatal intensive care unit (NICU), the parents should be informed that the facility discharging the infant to home is responsible for performing the screening. d. All parents shall receive information on milestones of normal auditory, speech and language development in children.

11 PAGE10 4. The hospital shall make every effort to identify a primary care physician for each newborn prior to discharge from the birthing visit. This will be the physician the newborn will see after being discharged from the hospital. The hospital shall include the primary care physician information with the individual referral made to the state EHDI program. 5. The hospital shall refer the names of individual newborns not passing the second screening, or those failing to have a second screening completed by 30 days of age, to the Department of Health s EHDI Program for follow-up tracking activities in accordance with the IHEARR Act. Referrals will be reported to the Department by the hospital using forms provided by DOH. The referral form shall contain complete information about the screening results and contact information for both the parent (or guardian), a family member and the PCP. Outreach and education to the top 10 birthing hospitals: In June of 2008, DOH and PA AAP developed a hospital newborn hearing screening survey requesting information on the hospital s initial and follow-up hearing screening procedures and the process for communicating hearing screening results to PCPs and the DOH EHDI Program. PA AAP has been gathering information by phone, starting with the 10 largest birthing facilities in Pennsylvania. These account for approximately 31 percent of all hospital births. Additionally, technical assistance/consultation is provided for any situations that come to light during the phone discussion. Initial results gathered from the questionnaires were reviewed by DOH and the Infant Hearing Screening Advisory Committee meetings in March and June of There are plans to use the results from the questionnaire to develop the tip sheets that will be used with the enhanced technical assistance as well as publish a Newborn Hearing Screening Hospital Best Practices document. Pediatrician survey and newborn data collection project: PA AAP developed a PCP survey that was implemented in July 2008 to obtain feedback about receipt of hearing screening results. A total of 151 pediatricians and 57 family practitioners from across Pennsylvania participated in this online survey. These practices were asked to complete and fax a form to the PA AAP for each newborn patient not seen in the hospital by a member of the practice. The form requested the name of the birth hospital, the birth date and the age (in days) of the newborn at the time of the first and second PCP appointments, as well as when screening results were received and how they were communicated to the PCP. Responses were received through October Results of the survey were shared with the Infant Hearing Screening Advisory Committee at their March 2009 meeting. The results indicated that parents provided the screening information to the PCP the majority of the time.

12 PAGE11 Professional Development for Early Intervention Service Providers In Pennsylvania, the Departments of Public Welfare and Education serve as the lead agencies for Early Intervention (EI). However, since 2003, the Bureau of Early Intervention Services in the Office of Child Development and Early Learning (OCDEL) has administered both the program for birth-to-three years of age services and those for preschoolers (from age three to school entry). Locally, EI services for children birth to age three and their families are administered by county EI Coordinators within Mental Health/Mental Retardation (MH/MR) offices. Local school districts, intermediate units and private agencies administer the preschool EI services to children. By combining all services for early childhood education at the state level under one roof, Pennsylvania has been able to achieve many innovative accomplishments, including a joint birth-to-five years Evaluation Report, Individualized Family Service Plan/Individualized Education Program (IFSP/IEP) forms and a joint EI Management Verification/Monitoring tool. The underlying message and philosophy of such an organizational structure is that children are more alike than different. In September 2007, under a contract with the Tuscarora Intermediate Unit 11, Early Intervention Technical Assistance (EITA), PA s EHDI Program, launched an effort to strengthen and enhance EI services for children with hearing loss. Major activities include training, family support and enhancing teaching resources. June 2009 Regional Early Intervention Training Workshop: In cooperation with the state EHDI program, Pennsylvania Early Intervention Technical Assistance staff developed and presented a series of statewide training workshops in 2009 to Part C-Early Intervention providers and others that focused on ways to communicate with infants and young children with hearing loss and additional disabilities when traditional modes are not sufficient. The specific outcomes for participants of the workshop were: 1. To be able to describe at least two implications of additional disabilities on the development of young children with hearing loss; 2. To describe at least two communication options to support the development of communication for young children with hearing loss and additional disabilities; and 3. To identify key state and national resources for information and support on topics related to children with hearing loss and additional disabilities. The workshops began with an update of what s new in Pennsylvania Early Intervention with respect to families of infants and young children with hearing loss or deafness. Susan Kershman, PhD. from PA Early Intervention Technical Assistance, reviewed the

13 PAGE12 Pennsylvania OCDEL Announcement EI-2009 Number: 01 Recommendations for Children who are Deaf or Hard of Hearing. This announcement was issued statewide in January 2009 to all EI Program Administrators. It contained specific recommendations related to providing Early Intervention services for families of infants/toddlers and preschool children with hearing loss. Dr. Kershman reviewed the Joint Committee on Infant Hearing (JCIH) 2007 Position Statement, its relationship to the EI Announcement and the results of a 2009 Parent Satisfaction Survey concerning EI services. Dr. Kershman also provided an overview of the Florida Resource Guide, Building Blocks, an alternative way of discussing communication options with families of children who have hearing loss or deafness. Dr. Kershman then introduced the main workshop presenter, Terry Rafalowski Welch, PhD, Project Consultant for the New York Deafblind Collaborative at the University of Rochester Medical Center. Dr. Welch has worked for more than twenty-five years with children with multiple disabilities, specializing in children with deafblindness. She has been a classroom teacher, a state administrator and a consultant with the American Foundation for the Blind s Deafblind Project. She has also been a trainer at both national and international levels on topics such as the development of communication skills in children who have sensory and additional disabilities. Dr. Welsh is currently doing program consultation in the upper New York State area and clinical assessments of children with autism, physical and multiple disabilities, including deafblindness at the University of Rochester Medical Center. Dr. Welch began the session by discussing her background and experiences with children of all ages with deafness and multiple disabilities. She described the leading causes of visual and hearing impairments, the most common conditions accompanying deafness and their possible effects on early development. The instructional guidelines she provided were based on sensory, physical, temporal and comprehension considerations. Methods for prioritizing what and when to teach were discussed in detail. In her session following the morning break, she discussed a broad definition of communication as distinct from language. The use of touch and object cues was presented in detail and, whenever possible, Dr. Welch suggested tools for practitioners use with children and families. Differences between intentional and non-intentional communication were shown, using brief video clips. For very young babies or children with severe or profound disabilities, methods to build intentionality were presented along with other considerations concerning presymbolic communication. The use of 2 and 3- dimensional tangible symbols was presented, along with ideas for selecting and using such symbols. In each case, charts were shown to allow systematic documentation of children s responses by family members or practitioners. Two important resources were introduced and shared in some detail: Tangible Symbol Systems: Making the Right to Communicate a Reality for Individuals with Severe Disabilities

14 PAGE13 (Rowland & Schweigert), and Instructional Practices: Tangible Symbol Systems: Making the Right to Communicate a Reality for Individuals with Severe Disabilities. The afternoon session included Show and Tell with experience books (books created about the child s day-to-day experiences and used for communication), modifications for signing based on visual needs, and presentation of the Communication Matrix (Charity Rowland). Each workshop participant was provided with a printed copy of the Communication Matrix along with the day s handouts. The target audiences for these workshop activities were Early Intervention service coordinators, service providers, teachers of the deaf and hard of hearing, special education and early childhood education teachers, speech-language pathologists, special health care needs consultants, physical and occupational therapists, nurses, audiologists and parents. A total of 184 people statewide participated in the workshops. June 2010 Regional EI Workshop At the time of this writing, the statewide June 2010 workshop for Early Intervention Service Coordinators and others just took place. The workshop was titled: Community Resources and Listening to Parents of Children who are Deaf or Hard of Hearing. The guest speaker was Lisa Kovacs, Parent and Program Coordinator, Indiana Hands & Voices/Guide By Your Side. A resource fair featured brief presentations and handouts from numerous local, state and national agencies related to deafness and hearing loss. In the afternoon, Ms. Kovacs moderated parent panels to discover how and when information about communication methodologies was presented, by whom, as well as the factors considered in decision-making. Additionally, Ms. Kovacs presented information on supporting families without bias and the impact of hearing loss on the family. The specific outcomes for participants of the workshop were: 1. Name and describe at least three different local, state and/or national agencies that can provide information resources and/or referrals for families of infants and young children with deafness or hearing loss. 2. List and describe at least five communication considerations/factors influencing decisions for the family. 3. Recognize at least two myth/biases in information about deafness and communication methodologies and at least one strategy for separating one s personal belief system from bias. 4. Describe and differentiate between five different methodologies and their accompanying philosophies for teaching language to young children who are deaf or hard of hearing.

15 PAGE14 5. Describe and categorize resources in Pennsylvania that will assist in sharing information and materials with families, as well as put them in touch with deaf adults and with each other regarding communication skills Parent Satisfaction Survey Under the sponsorship of the state EHDI program, in January 2010 the Bureau of Early Intervention Services in the OCDEL ( conducted a survey of all parents of children diagnosed with hearing loss who were enrolled in infant/toddler Early Intervention services. The purpose of the survey was to improve and monitor the quality of Early Intervention by gathering information from parents who have children who are deaf or hard of hearing and who are enrolled in services. Four hundred and six surveys were mailed to parents/caregivers and 123 surveys were completed and returned for a response rate of 30 percent. Highlights from the survey include: 1) the respondents indicated that 72 percent were able to schedule an appointment for a comprehensive diagnostic audiological evaluation within 30 days from request; 2) the respondents indicated that 63 percent had their child in EI services by the time they were 6 months old; 3) the respondents indicated that 27percent had a child with multiple disabilities; 4) the respondents indicated that 98percent considered their family s daily routine when planning for EI services; 5) the respondents indicated that 97percent were given access to at least one staff person who was qualified in the areas of deafness and hearing loss. The survey did identify areas for improvement which included: respondents indicated that 29percent were not offered opportunities to connect with other parents who had children with hearing loss; and, respondents indicated that 57percent were not offered opportunities to connect with adults who are deaf or hard of hearing. This survey has been conducted annually since 2008 with some modifications to questions. Early Intervention Web-Based Training Course: The state EHDI program is working with Pennsylvania Early Intervention Technical Assistance staff on development and implementation of a web-based training course for EI service providers and others. The course features Mary Koch, an auditory education consultant with a Masters in Education of the Deaf from Gallaudet University. Mary has more than 30 years of experience working with all ages of children with deafness and hearing loss and their families. Ms. Koch also conducted the statewide workshops for service coordinators several years in a row. Presentations (various topics), learning activities and study questions are included in the

16 PAGE15 training modules. Pilot testing of this training is now in progress, and plans are to implement this training in the fall of The pilot testing is largely for purposes of determining the appropriate credit hours for the course. Pennsylvania Low Incidence Institute and Great Start: The annual Pennsylvania Low Incidence Institute Conference will be held in State College, PA from August 2 through August 6, The Low Incidence Institute is a five day conference that focuses on topics related to serving students with deafness or hearing loss, blindness or visual impairment, deafblindness, traumatic brain injury, mental retardation and multiple disabilities. Parents, teachers, speech and language clinicians and administrators working with these students are invited to attend. The first two days of the Institute include the Great Start program which focuses on younger children with hearing loss. State EHDI staff and Early Intervention program staff are working to advertise the institute. Several featured speakers this year are: Arlene Stredler-Brown (University of Colorado) will be speaking on the Functional Auditory Performance Indicators, as well as Competencies for People Working in Early Intervention. Katherine Stremmel (National Consortium on Deaf-Blindness) will be speaking about Early Intervention in Natural Environments. Paula Pitman (SKI-HI Institute/Utah State University) will discuss the role of Early Intervention in providing family support. The state EHDI program, through its contract with Early Intervention Technical Assistance, provides scholarships for parents to attend the Great Start Conference. Teaching Resources: Pennsylvania s Training and Technical Assistance Network (PaTTAN), of which EITA is a part, administers a Short Term Loan Kit library consisting of both assistive technology and resource materials made available to teachers and EI staff upon request. Common items found in the kits include books, toys, videotapes, DVDs, CDs, workbooks and text books. Under the contract between DOH and EITA, the number of kits has increased and materials in the kits have been updated. A wide range of topics are available, including information about early language development, auditory tests, signing videos and books, early literacy, materials on communication methodology options (both broad and specific), videos on best practices in home visiting and early intervention and more. Short Term Loan Kit materials continue to be developed and enhanced Family Forums: In May 2010, the state EHDI program sponsored a series of three forums across the state for parents of children with deafness or hearing loss. The forums, called Investing in Parent Support, were held in Pittsburgh, King of Prussia and Harrisburg. The purpose of the forums was for parents to network and share both their experiences and their

17 PAGE16 suggestions for parent support regarding PA s Newborn Hearing Screening Program. Professionals and organizations were invited to supply written materials concerning their agencies, services or resources. Early intervention staff were facilitators and note takers. An on-line survey was available for parents who were unable to attend the forums but wished to contribute their ideas. The survey was also made available via hardcopy and submitted to the Department for data entry into the web survey. Information and ideas from the parent forums were presented and discussed at the June 3, 2010 Infant Hearing Screening Advisory Committee meeting. Based on the feedback from the meetings and the surveys, it is clear that parents want support from other parents as well as from adults with hearing loss. Also, family support needs to be multifaceted. Some parents want web discussion groups, others want home visits and some want regional meetings or annual conferences. A workgroup will begin working on the model for a peer support program in the fall of 2010, as well as plans for an annual forum meeting and a web information sharing group. Hospital Workgroup The goal of this program is to identify, document and publish newborn hearing screening best practices. The Department is looking into forming a similar workgroup with its participating midwives for the same purpose. Program is planning a call for late summer/ early fall 2010 to discuss technical assistance issues and screening protocols. Early Head Start Hearing Screening Pilot Program In April of 2008, PA EHDI Program staff began a discussion with William Eiserman, PhD., from the National Center for Hearing Assessment and Management (NCHAM) regarding the possibility of starting an Otoacoustic Emission (OAE) Early Head Start Hearing Screening Program in Pennsylvania. It is believed that a well structured OAE Early Head Start Hearing Screening Program would help reduce losses to follow-up in the state EHDI Program and help identify young children who develop late onset hearing loss. Eight Early Head Start Programs, serving low income children ages birth to three, were identified to participate in launching the Program in Pennsylvania. Early Head Start program was matched with a local audiologist who specializes in pediatric care. This group formed the initial Pennsylvania Early Childhood Hearing Outreach (ECHO) team. Although selected programs are located throughout the state, most programs are located in the Southeastern region, which, historically, has the greatest number of lost to follow-up cases. Cases that are lost to follow-up are those referrals received at the Department that cannot be located by phone, mail or physician. In October 2008, Dr. Eiserman and two members of his staff traveled to Harrisburg to conduct a training session with early head start program representatives, the audiologists,

18 PAGE17 PA EHDI program staff and a DOH Community Health Nurse. NCHAM provided six programs with a free OAE hearing screening unit and supplies that were distributed at the training. (Luzerne County had already purchased their own unit, and the Berks and Chester County programs agreed to share a unit.) After a two-hour classroom training, the attendees separated into three groups and visited three local Early Head Start Programs for hands-on training with the new equipment. All program representatives agreed to begin screening and to report screening results by February On March 6, 2009, Dr. Eiserman and PA EHDI Program staff held a teleconference with PA ECHO team members to answer questions and to offer assistance. PA EHDI staff is currently working with ECHO teams to develop a system to report information to the EHDI Program whenever children are identified with permanent childhood hearing loss. Also, ECHO team members are now on a PA EHDI Program distribution list and will routinely receive general information that may be of benefit to them. Based on data provided to the EHDI program in May 2010, approximately 521 children were involved in the participating programs that required a screening. Thus far, 196 have passed the screening, and 68 require an additional screening and medical follow-up. Potentially, these 68 children may have been missed in the newborn screening follow-up process. Infant Hearing Screening Advisory Committee The successful progress of the PA EHDI program is made possible largely by significant collaboration and input from the Infant Hearing Screening Advisory Committee. This sixmember Committee is appointed by the Secretary of Health and makes recommendations to the Department on issues relating to regulation, administration, diagnostic testing, technical support and follow-up for the EHDI Program. While the statute is silent on the frequency of Advisory Committee meetings, established practice has been to meet quarterly in Harrisburg. In addition to attending meetings, members provide program staff with ongoing advice and consultation on a variety of topics and occasionally serve as presenters at conferences, training workshops and presentations. The Committee is currently comprised of one neonatologist, two audiologists, one educator for the deaf and hard of hearing, one otolaryngologist and a parent advocate with a young child with hearing loss. The Committee is a valuable part of Pennsylvania s hearing screening program. At the November 2009 meeting, the committee passed Bylaws that included information on the committee name, purpose, membership, duties, officers, meetings, subcommittees, amendments and parliamentary authority. 1) In the membership section, the composition of the committee is addressed specifying that, at least one member be a family physician, otolaryngologist, neonatologist, pediatrician, or member of a medical profession that has an interest in newborn hearing screening; 2) at least one member is an audiologist with experience in pediatric care; 3) at least one member is a parent of a child

19 PAGE18 with hearing loss or a member of a parent organization with an interest in deafness and/or hearing loss in young children; and 4) the remaining members should have a knowledge of and interest in newborn hearing screening. In 2008, current and past committee members gathered with stakeholders to participate in a strategic planning session. In 2009 and 2010, the members have played a key role in the discussions of the program s family support initiative. CURRENT MEMBERS OF THE INFANT HEARING SCREENING ADVISORY COMMITEE James A. Zeigler, AuD (audiologist) Committee Chair Private Practice, Kingston Pennsylvania Reappointed July 2010 Elca Swigart, PhD (audiologist) Committee Vice Chair Director Speach and Hearing Center, Reading Hospital at Wyomissing Plaza Appointed June 2009 David H. Chi, MD (otolaryngologist) Assistant Professor Otolaryngology, University of Pittsburgh School of Medicine, Director Hearing Center, Children's Hosptial of Pittsburgh Reappointed June 2009 Stephen L. Shapiro, MD (neonatologist) Wellspan Medical Group, York Hospital, York Pennsylvania Appointed June 2009 Judith S. Sexton MS, CED (educator) Director, Clarke School, Bryn Mawr Pennsylvania Appointed June 2009 Karin E. Pejack (parent advocate) Camp Hill, Pennsylvania Appointed June Resigning September 2010

20 PAGE19 Conclusion Newborn hearing screening began in 1999 as a pilot program in 26 hospitals and has been in all birthing hospitals since Since its statewide inception, 848,393 infants have received initial hearing screenings during the first 30 days of life. Through this screening system, 1,517 children have been identified with some form of hearing loss. These children are, hopefully, experiencing successful communication with their family and friends because of this program. DOH has also made considerable progress in the areas of 1) medical home outreach; 2) providing screening resources for out-of-hospital births through the establishment of midwife screening networks; 3) providing educational outreach to hospitals, primary care physicians and audiologists; 4) offering technical assistance to select hospitals; 5) providing training for Early Intervention Service Coordinators; and 6) creating a central point for information on newborn hearing screening through our website Although the Pennsylvania Early Hearing Detection and Intervention program has made steady progress, opportunities for improvement exist. Part C, Early Intervention providers could be more aware of, and responsive to, the type and severity of each child s hearing loss, each family s preferences and the different communication options and instructional methods. Families need additional support and assistance connecting with other families or adults who experience hearing loss. They need a mechanism for sharing information regardless of geographic location. Medical professionals need a constant reminder of the needs of children with hearing loss and the importance of receiving services early. Progress on these efforts will enable the Pennsylvania EHDI Program, with its partners, to mature to the level envisioned for model programs by the Health Resources and Services Administration and the Centers for Disease Control and Prevention.

21 PAGE20 References Bess, F. The minimally hearing-impaired child. Ear and Hearing, 1985; 6: Bess, F., Dodd-Murphy, J. and Parker, R. Children with Minimal Sensorineural Hearing Loss: Prevalence, Educational Performance, and Functional Status. Ear and Hearing, 1998; 19(5) Centers for Disease Control and Prevention. National Center for Birth Defects and Developmental Disabilities, Early Hearing Detection and Intervention Program. From Centers for Disease Control and Prevention. National Center for Birth Defects and Developmental Disabilities, Early Hearing Detection and Intervention Program. What is EHDI? From Flexer, C. Facilitating Hearing and Listening in Young Children. San Diego, CA: Singular; Oyler, R., Oyler, A. and Matkin, N. Unilateral Hearing Loss: Demographics and Educational Impact. Language, Speech and Hearing Services in Schools; 1988; 19: Quigley, S. The Effect of Early Hearing Loss on Normal Language Development. Pediatric Audiology, Englewood Cliffs, NJ: Prentice-Hall; U.S. Department of Health and Human Services. Maternal Child and Health Bureau. Universal Newborn Hearing Screening. From Contact information Department of Health Early Hearing Detection and Intervention Program Melita J. Jordan, CNM, MSN, APRN C Director, Bureau of Family Health William R. Cramer, M Ed. Director, Division of Newborn Screening and Genetics wcramer@state.pa.us Mary King-Maxey Program Manager, Newborn Hearing Screening Section Division of Newborn Screening and Genetics mkingmaxey@state.pa.us Arthur Florio Program Administrator, Newborn Hearing Screening Program Division of newborn Screening and Genetics aflorio@state.pa.us