Project Abstract

1.  Organizational Setting:  The Department of Public Health, Bureau of Community Health, Family Health Division, Children with Special Health Care Needs Unit will be responsible for the Universal Newborn Hearing Screening and Intervention Project. The Bureau is home to the state Title V program for Connecticut (CT). The Division houses the following programs: Children with Special Health Care Needs (CSHCN); the CSHCN Registry; Genetics/Metabolic Lab Screening and the Universal Newborn Hearing Screening and Intervention (UNHSI) program. The Universal Newborn Hearing Screening and Intervention Project Manager will be Donna C. Maselli, RN, BS.

Purpose: The purpose of this project is to enable Connecticut (CT) to expand and improve the state mandated UNHSI program, which began on 7/1/00.  Specifically, this project will improve standardization of the screening protocols for UNHSI at 30 hospitals, provide screening equipment to those institutions requiring assistance in meeting the standards (thereby increasing the percent of infants screened, currently 93.9%), fill the gap in services for audiological diagnostic testing, support training for 17 audiology diagnostic testing center audiologists to assure quality and capacity, establish a follow-up monitoring and data management system (already in place for infants with a bilateral, 40 dB or greater hearing loss) for infants at risk or with mild, moderate and/or unilateral hearing loss, assure that all infants with hearing loss are linked to a medical home and a family support network (infrastructure in place through Title V CSHCN program), provide educational pamphlets and booklets for families of infants with hearing loss who are referred to Early Intervention (EI) to enhance informed decision making regarding treatment options and to establish a Child Find program to track infants that are lost to follow-up.

3.  Challenges: There are six overt challenges to this project: 1) hospitals vary in their methods and capacity to perform newborn hearing screens; 2) there are diagnostic testing centers lacking in two areas of the state; 3) the knowledge-base of audiologists is varied; 4) there is no mechanism for providing a linkage to a medical home, follow-up or resources to those infants who screen negative, but are at risk for developmental delay due to mild to moderate, unilateral loss or other risk factors; 5) to increase the current capacity of the DPH to offer culturally sensitive, linguistically competent education to families and resource information to health care providers; 6) there is no formalized program to track and locate infants that may be lost to follow-up. Each of these challenges is addressed under methodology.

4.  Goals and Objectives: This project will address the following goals: Goal 1: ensure that all birthing facilities provide standardized newborn hearing screening prior to discharge. Objective 1: by November 1, 2001 the DPH will have assisted seven birthing facilities in obtaining the necessary screening equipment to ensure that all infants that do not pass the initial screen receive an automated brainstem response (ABR) screening prior to discharge. By January 1, 2002 all hospital staff conducting screening will have received the necessary training to conduct an ABR screen. Goal 2: To make the resources available to audiology centers in two areas of the state to provide diagnostic testing to infants in areas that lack the services. Objective 2: By December 1, 2001 the DPH will have filled gaps in the lack of availability of services by assisting two audiology centers in obtaining the necessary diagnostic testing equipment to perform services to infants. Goal 3: To support formalized training of audiologists who conduct diagnostic testing of infants.  Objective 3: By December 1, 2001 each diagnostic testing center will have had at least 1 and not greater than 3 audiologist's that participated in the Regional Training sponsored by the National Early Hearing Detection and Intervention (EHDI) Technical Assistance System. Goal 4: To have a mechanism in place to provide ongoing follow-up to infants who screen negative, but are identified as at risk for hearing loss, and/or those infants with a hearing loss that do not meet Birth to Three eligibility requirements. Objective 4: By September 1, 2001 UNHSI staff will have a plan and protocols developed to implement a follow-up monitoring program for the children at risk for hearing loss who do not qualify for EI services. The UNHSI staff will have conducted training for hospital staff, audiologists and EI program staff. The DPH will have a signed written agreement in place with the Ages to Stages (ASQ) program staff who will manage the follow-up program. A written consent will be developed for families to sign for participation in the program. By January 1, 2001, DPH will implement the follow-up program. Goal 5: To assure that all hearing impaired infants are linked to a medical home. Objective 5: By October 1, 2001 all infants with any degree of a diagnosed hearing loss will be screened for linkage to a medical home, ease and accessibility of services and insurance coverage or lack of. Goal 6: To provide informational and educational materials for families on UNHSI screening, diagnostic testing and early intervention. Objective 6: By January 1, 2002 the materials will be available for distribution. Goal 7: To establish a Child Find program to track infants lost to follow-up. Objective 7: By May 1, 2002 DPH will have an established Child Find program in place.

5.  Methodology: 1) DPH will provide funding to the seven birthing facilities that presently only use otoacoustic emissions screening (OAE), to purchase ABR screening equipment. All infants born in the state that do not pass an initial screening will be rescreened prior to discharge using the ABR method. Families will not be billed for screening. The UNHSI program data is linked with the Newborn Lab Screening program to verify that all infants were screened. UNHSI staff will monitor initial and rescreen results through the existing Hi*Track data management or other state tracking system. 2) Funding through this project will be used purchase two diagnostic testing ABR machines for two diagnostic testing centers to fill gaps in service availability. 3) Funding through this project will enable Audiologists currently identified as one of the 17 centers that conduct diagnostic testing of infants, to attend the National Early Hearing Detection & Intervention (EHDI) Technical Assistance (TA) training to assure quality of testing. 4) The DPH will develop a mechanism to assure that all infants with a hearing loss are linked with a medical home. All infants identified through UNHSI with any degree of hearing loss or risk factor will be referred to the CSHCN program and Birth to Three, through a single referral line. All families of infants referred will be screened to ensure linkage to a medical home and that they have adequate health insurance coverage. Uninsured or underinsured families will be linked to the state children's health insurance program (SCHIP). Families of infants who are at risk for hearing loss and/or those with hearing loss that do not meet Birth to Three eligibility requirements will be offered the opportunity to participate in the Ages to Stages (ASQ) program to provide ongoing follow-up and monitoring. The follow-up program will model the ASQ program that Birth to Three has established. Families of infants identified at risk through the UNHSI program will be mailed age appropriate questionnaires on a quarterly basis. The questionnaires will focus on the child's speech, language and developmental milestones. A data system will be used to track and identify children in need of further evaluation based on the questionnaire responses. Any child in need of further evaluation will be referred to the Birth to Three program. 5) The DPH will provide informational brochures and other materials for birth hospitals to distribute to parents and will provide a Service Guideline for EI to parents of children with a confirmed hearing loss. The informational materials will empower families to make an informed decision as to EI treatment options available (and will be available in English, Spanish). 6) DPH will establish a Child Find Program to locate infants that are lost to follow-up.

6.  Evaluation:  The Program Manager and data staff will evaluate the UNHSI program at multiple points using the Hi*Track data management system. The infant's age at screening, diagnosis and enrollment in EI will be tracked, as well as lost to follow-up rates. Infants enrolled in Ages to Stages will be tracked as well as the number referred back to Birth to Three for reevaluation. Satisfaction surveys will be mailed to a sample of parents and health care providers to further evaluate the project.

7.  Text of Annotation: The CT DPH will build on the newly implemented UNHSI program to ensure that all infants are screened at birth prior to discharge, that infants receive prompt diagnostic testing by trained audiologists, that infants are enrolled in an EI program and linked to a medical home. This project will establish a follow-up program for infants with a unilateral or other hearing loss, who are not eligible for EI services and will establish a mechanism to locate infants lost to follow-up. Informational materials will be distributed to assist families in making an informed decision about treatment options available.

8.  Key Words: Universal newborn hearing screening, false-positive, diagnostic testing, pediatric audiologist, Infoline, Ages to Stages, primary care providers, medical home, automated brainstem response (ABR), otoacoustic emissions (OAE), Birth to Three, early intervention (EI), lost to follow-up, population served, cultural competency.

Narrative

1.  Purpose of the Project: The funding sought through this initiative will be used to expand and improve CT's existing UNHSI program, which began on July 1, 2000. The overall purpose is to ensure that all infants are screened for hearing loss before discharge, assure diagnostic testing by two months of age and enrollment into early intervention by four months of age. Through this project CT will decrease the number of referral and false-positive rates, provide the audiologists an opportunity to broaden their knowledge base and to enable the DPH to operate the UNHSI program in a manner that is standardized, accessible, family-centered, comprehensive, coordinated and culturally competent.

CT has legislation in place that mandates the screening be implemented in all birthing facilities as a standard of care (see Appendix B, CT Legislation). Although the DPH developed comprehensive UNHSI Guidelines, the actual screening equipment varies from one institution to another. The UNHSI program will provide funding to the 7 birthing facilities currently using OAE equipment only, to purchase ABR screening equipment.  This project will enable the DPH to standardize the program to ensure that all infants born in CT that do not pass the initial screen at birth will receive an ABR screening prior to discharge. This will significantly decrease the number of infants that are referred for diagnostic testing, will decrease the false-positive rates and will significantly reduce needless parental anxiety.

The CT UNHSI guidelines recommend that when an infant refers from the initial screen at birth they be referred to an audiologist for diagnostic testing within two to four weeks of the initial screen. The family is given the screening results by the birth hospital and is referred to one of 15 audiology centers in the state that conduct diagnostic testing of infants. Testing equipment and background education varies amongst the audiologists. This project will enable UNHSI staff to support training for the audiologists to assure quality and capacity of diagnostic testing. It will facilitate the opportunity for audiologist's working with families and children to provide services that are appropriate, family-centered, comprehensive, coordinated and culturally competent.

This project will provide diagnostic ABR equipment to two audiology centers in the state that lack the equipment to conduct diagnostic testing, to fill gaps in services. This will geographically organize the diagnostic testing centers throughout the state to make them more accessible to families and decrease the likelihood that an infant will be lost to follow-up.

Currently infants with a bilateral hearing loss of 40 dB or greater are referred to Birth to Three by the diagnosing audiologist. There is no mechanism in place to provide ongoing follow-up to infants that are not eligible for Birth to Three, i.e., those who screen negative, but are at risk for hearing loss or infants with mild, moderate or unilateral hearing loss. Through this project DPH will plan and establish protocols to expand the Ages to Stages Questionnaire (ASQ) program, currently being utilized by Birth to Three, to include children identified through the UNHSI program that have a unilateral hearing loss and/or those who may be at risk for progressive hearing loss or other speech, language or developmental delays.

CT recently passed legislation to fund a single statewide Children's Health Referral Line that will be used by multiple state agencies and health care providers to link families to appropriate services. The project, called Child Serve, will be managed by Infoline staff. Infoline is the well-established information and referral service for CT. All children identified through UNHSI will be referred to the referral line by the audiologist, family or health care provider. Infoline staff will provide families with information about Birth to Three and the CSHCN program. This will assure that all children referred are screened for linkage to a medical home, and that all families of CSHCN are referred to appropriate and available resources.

DPH currently lacks the necessary support staff to find infants identified through the UNHSI program that are lost to follow-up. The UNHSI program will hire a secretary to assist in tracking and locating infants through phone calls and letters.

The overall anticipated benefit of this project will meet the need of establishing a standardized screening and follow-up system for infants by providing information and a working partnership with families, hospital staff, audiologists and the medical home to coordinate appropriate diagnostic and early intervention services. This project will enable DPH to have culturally sensitive, linguistically competent educational materials available for families of infants with a diagnosed hearing loss to assist them in making an informed decision.

2. Organizational Experience and Capacity: On a federal level, the state's Title V, CSHCN Program has been cited as a model for other states moving from the provision of direct care services to contracting with community agencies for these services. Since 1964 the DPH has operated the Newborn (Laboratory) Screening program in which infants are screened for eight genetic/metabolic disorders before discharge. The DPH Newborn Screening staff follow the infants through testing, tracking and treatment. A match with vital records conducted in 2000 identified that 99.98 % of all newborns had the lab screening conducted at birth.

In September 1999 the DPH, Maternal and Child Health Division hired Donna Maselli, RN, BS, a full time nurse consultant, to develop and manage the UNHSI program. She is a member of the Enhanced Child Find Through Newborn Hearing Screening Advisory Board, the CT Newborn Hearing Screening Task Force, the Commission on Deaf and Hearing Impaired Advisory Board, and a member of the Directors of Speech and Hearing in State Agencies. Ms. Maselli established a strong partnership between DPH and the birth hospitals, pediatricians, audiologists, the Department of Mental Retardation, Birth to Three System, (lead agency for IDEA Part C), the State Child Health Insurance Program (SCHIP) program and the CSHCN program.  She developed comprehensive UNHSI Guidelines for the state that were distributed to birth hospitals in December 1999 (see Appendix C, UNHSI Guidelines).

Ann Marie Montemerlo, RN, MBA, Supervising Nurse Consultant has been employed with the State Health Department for 10 years and served as the chairperson in the writing of the UNHSI regulation. She is the Title V CSHCN Director and participates in the New England SERVE, funded by MCHB, which acts as a regional forum to discuss policies and issues related to CSHCN. She is also an active member of the Steering and Advisory Committee for CSHCN and Husky Plus (SASH).  This group provides advice to the DPH and the Department of Social Services on the policies and administrative issues affecting the CSHCN and SCHIP programs. She is also a member of the DPH Genetics Advisory Committee (GAC). 

3.  Administrative Structure: The DPH is the lead agency for public health initiatives in the state. The Bureau of Community Health (BCH) is one of six bureaus within the DPH. The UNHSI program, as described in the state's MCHB Block Grant application, is located in the BCH, Family Health Division (FHD). Other programs in the FHD include the Genetics/Newborn Laboratory Screening program, Sickle Cell services, the Sickle Cell Transition project, the Title V Children with Special Health Care Needs Program, the CSHCN Registry and the Sudden Infant Death (SIDS) program. Donna C. Maselli, RN, BS, will serve as the UNHSI Project Manager. 

CT has an established UNHSI Task Force, which was instrumental in getting the necessary legislation passed to implement UNHSI. The Task Force is a multidisciplinary group of professionals with representation from the following: DPH, DMR (Birth to Three program), audiologists, Commission on the Deaf and Hearing Impaired, American School for the Deaf, hospital nurse managers, a neonatologist, other community based people who have interactions with the deaf and hearing impaired population, and families of deaf infants and children. The Task Force established recommended standards for pediatric audiologists and the recommendations were incorporated into the UNHSI Guidelines (see Appendix D, Task Force Recommendations). The Task Force continues to meet on a monthly basis, continues to work collaboratively with the DPH and remains an active force in the UNHSI program.  The group has evidenced its support for the DPH in responding to this grant application, and has submitted a letter of support for this project (see Appendix E, Letters of Support).

The Enhanced Child Find Through Newborn Hearing Screening Advisory Board was recently established in CT (12/00) through a grant received by the University of Connecticut Health Center, Division of Child and Family Studies (DCFS). Its members include DPH staff, audiologists, Birth to Three, DSS, physicians, families of children that are deaf and consumer groups (see Appendix E, Community Relationships).  The DCFS project developed a Parent-to-Parent Support Network. Referrals are made by the birth hospital staff. The Network is designed to provide support to families of infants who have had a screening and have been referred for follow-up testing. These are families whose children may or may not be determined to have a hearing loss. They work collaboratively with the UNHSI Project Manager to provide family support through the EHDI process, identify gaps in services for families and children, conduct needs assessments and assure that outreach is accessible to all families. The DCFS provides DPH with quarterly reports on the number of parents referred to the Parent-to-Parent Network.

CT has a well-established early intervention program (Birth to Three) in place, experienced in working with infants with hearing loss. Legislation has been in place for birth hospitals to screen infants at “high risk” for hearing loss since 1985. Birth to Three staff developed a Service Guideline for Families of Infants that are Deaf or Hearing Impaired and have three centers that specialize in working with hearing impaired infants and children. Birth to Three has endorsed this project as evidenced by a letter of support (see Appendix E, Letters of Support).

CT has legislation in place that mandates audiologists and other health care providers to refer any child that has the potential for a developmental delay to Birth to Three within two days of acquiring such knowledge (see Appendix B, CT Legislation). Birth to Three has a well-established telephone referral line that is managed by Infoline staff. The DPH has signed a Memorandum of Agreement (MOA) with the Department of Mental Retardation (DMR), the lead agency for IDEA Part C in Connecticut (see Appendix G, Memorandum of Understanding). This MOU allows the agencies to collaborate on a process that provides early identification and habilitative treatment of infants with hearing impairments, while maintaining patient confidentiality. This MOU permits the exchange of data from DMR to DPH to assure infants with diagnosed hearing loss are enrolled in the Birth to Three System.

Through this project all children with special health care needs will be referred through Infoline to Birth to Three and the CSHCN program. Infoline will automatically refer all infants, including those that do not meet Birth to Three eligibility, to one of the state's two Title V regional CSHCN centers. The infrastructure is presently in place to accommodate the referral of these children into the two CSHCN centers located in Hartford and New Haven and is expected to begin in December 2001.

Available Resources:  Connecticut's greatest resource is the legislation in place that mandates all birth

hospitals to conduct UNHS as “a standard of care”. Informed consent is not required in CT, as screening is mandated by state law. Parents do have the right to refuse screening based on religious tenets and beliefs. Since the implementation of UNHS in CT on July 1, 2000, 32,225 infants have received a hearing screen at birth and 22 families have refused screening.

The UNHSI Project Manager, Donna C. Maselli, RN, BS (1 FTE) will devote 30 % of her time to coordinate the management of this project. The UNHSI program employs Sallie Pinkney, Research Assistant (0.5 FTE) to assist with collection and verification of data and other related duties. Ms. Pinkney will devote 50 % of her time to this project.

Other in-kind support services for this project include clerical and office support (telephone, facsimile, etc.), meeting rooms, office equipment, computers, printers, supplies, laptop and LCD for presentations and office space.

The DPH was recently awarded a grant by the CDC that is being used to create a CSHCN Registry. The CSHCN Registry will be directly linked to the UNHSI and the Newborn Lab Screening programs through the Internet based reporting system. Through the new CSHCN Registry, birth hospitals will report all CSHCN to the DPH via the Internet based reporting system. The program will begin a pilot in the summer of 2001. The shared data base will enable UNHSI staff to verify that all children identified through the UNHSI program are referred to and/or are receiving the care coordination and services available through the CSHCN Program. (The CDC CSHCN Registry grant does not fund any components of the UNHSI program).

CT has an Internet-based reporting system for birth hospitals to report the hearing screening and newborn bloodspot screening results to the DPH. This enables the UNHSI program staff to receive hearing screening results at or before the time the infant is discharged from the hospital. The DPH purchased the Hi*Track data management system to track screen results. The information received from the birth hospitals is downloaded daily from the internet server into Hi*Track. Hi*Track has the capability to generate extensive reports and allows UNHSI program staff to track infants from the initial screening, through diagnostic testing, to enrollment into the Birth to Three System. State funding of $70,000.00 per fiscal year has been allocated to the UNHSI program. The state funds will be utilized to enhance the internet-based reporting system from birth hospitals to the DPH.

The DPH has designed, printed and distributed UNHSI program patient information brochures (English and Spanish) to hospitals statewide for distribution to families. DPH worked collaboratively with the DPH Office of Communications and recently implemented a $100,000 media campaign to increase public awareness about the UNHSI program. Billboards and bus boards were displayed throughout the six largest populated cities in the state. The bus board signs were later distributed to Community Health Center's (CHC's) and birthing hospitals to display in areas accessible to pregnant women and families.  Several news stations have televised segments on UNHSI in CT.

The DPH recently developed a website for public access to department information and services. The UNHSI program manager is currently working with the Office of Communications to develop a web page specific to hearing loss in infants and CT and national resources available for families.

CT has well established Parent-to-Parent Networks through the CSHCN program, Birth to Three System and the and the UConn Health Center Division of Children and Family Studies project.

The Enhanced Child Find Through Newborn Screening Advisory Board, UNHSI Task Force, the ICC and other professional groups that participate and strongly support this initiative, are a source of support.

Resources are available out of state as well. The National EHDI Technical Assistance System will offer training for audiologists involved in UNHSI. Antonia Brancia-Maxon is the Region 1 network specialist and is based in CT.  She is a member of the CT UNHSI Task Force and offers advice and ongoing support to the DPH in all phases of the UNHSI program.

DPH will review any materials developed by the Center on Childhood Deafness at Boys Town National Research Hospital and the Center for Early Intervention, Professionals in Hearing Impairment at the University of North Carolina to adapt materials that have already been developed into our screening program.

The overall commitment of the Maternal and Child Health Bureau to UNHSI is evidenced by the offer of this funding. The resources requested through this proposed project will be a good investment in that it will facilitate early screening, diagnosis and intervention for children identified through UNHSI. Early hearing detection and intervention decreases the likelihood that a child will experience speech, language and other delays associated with congenital hearing loss, thus reduces the numbers of children that may require special education services.

5. Identification of Target Population Service Availability: The target population for this project will

include birthing hospitals, infants identified through the statewide tracking system that do not pass the

initial hearing screening(s), the families of infants with a diagnosed hearing loss as well as those with risk

factors, the infant's medical home and the 17 audiology centers that conduct diagnostic testing of infants.

Goal 1 (Screening): CT has 30 birth hospitals, all of which conduct UNHSI, with an average of 45,000 births per year. Recent surveys conducted in CT revealed that 98% of women who have uncomplicated deliveries are discharged within 48 hours. The prime opportunity for conducting the hearing screening in terms of infant accessibility is at the hospital of birth. Hospital nursery staff will play an important role in this project through the screening of infants before discharge, patient education, distribution of educational materials, reassuring the parent, as well as emphasizing the importance of follow-up when indicated. In addition, the hospital personnel will report the required data elements to the DPH for tracking of the infants.

CT guidelines direct that if an infant does not pass the first screening, it will be repeated at least once prior to discharge. Recent surveys in CT have identified that 7 out of 30 birth hospitals utilize OAE screening only. This accounts for 20 % of the births in the state.  The average refer rate in these OAE based programs is 17.5 %, whereas refer rates in the ABR based programs is 7.7 %. It is expected that this project will decrease the false-positive rates by improving the method by which the infants are screened prior to discharge.  This project will assist the 7 OAE based birthing facilities in obtaining ABR screening equipment to standardize the screening methods throughout the state. All infants that do not pass the initial screen (either OAE or ABR) will be rescreened prior to discharge using the ABR method. Standardization of the two step screening will significantly reduce the number of infants referred for diagnostic testing, reduce the number of false-positive referrals and eliminate unneeded parental anxiety. The challenge will be in training hospital staff to the standardized screening protocols. This will be done through meetings with DPH and onsite visits to the 30 birth hospitals.

Goal 2 (Diagnostic testing): This project will target an inner city with approximately 2876 births per year and the eastern part of the state with approximately 1980 births per year. Both areas lack diagnostic testing centers to serve families of infants that refer from the initial screening at birth. This project will fund the purchase of diagnostic equipment for the two centers, which will enable follow-up, care to be more accessible to families.  The challenge will be in informing birth hospitals and other care providers of the availability of services. The DPH will revise the list of diagnostic testing centers to include the two new centers. The lists will be laminated and will be distributed to all pediatricians, family practitioners, community health centers, birth hospitals and audiologists in the state.

Goal 3 (Audiologist training): There are no licensing requirements or standards in CT for a “pediatric audiologist”.  The training and education amongst state audiologists varies. This project will target the 17 audiology diagnostic testing centers to ensure that a sample of their audiologists receive standardized training and education on the test battery necessary for diagnostic testing of infants. Up to date training will allow audiologists the opportunity to be kept apprised of new technological advances in hearing aids, amplification devices, screening and diagnostic equipment, and will enhance the diagnostic process for families. A prompt diagnosis will facilitate a child's referral to early intervention to early intervention by four months of age.

Goal 4 (Early intervention): Presently, only infants that are eligible for EI (with a bilateral hearing loss of 40 dB or greater) are referred to the Birth to Three program by the audiologist. These are stringent requirements that may exclude some children in need of follow-up. There is no mechanism in place to provide ongoing follow-up to infants identified through UNHSI who may be at risk for hearing loss or speech, language and developmental delays. From 7/1/00 through 3/31/01 fifteen infants have been identified through UNHSI with a unilateral hearing loss. Six out of the fifteen infants had an undetermined type of hearing loss. Infants with a primary diagnosis of hearing loss (or no hearing loss with the presence of risk indicators), that do not meet the Birth to Three program eligibility requirements will be targeted through this project.           

Goal 5 (Medical home): All children with any degree of hearing loss, as well as those at risk for hearing loss will be referred to Birth to Three. Each family will be screened to assure that they have appropriate health care insurance, access to a medical home and will be offered the Ages to Stages questionnaire (ASQ) follow-up program. All referrals will be dually referred to the CSHCN program to ensure access to care coordination, family support and advocacy.  Although the CSHCN program eligibility includes families at 300 % of the federal poverty level, all families, regardless of income and eligibility, are eligible for care coordination and advocacy through the program.  Children eligible for the CSHCN program can receive hearing aids and other related equipment and services funded by Title V dollars.

Goal 6 (Cultural competency): Census records have identified that 16% of CT's population is Spanish speaking. All UNHSI educational materials developed and distributed by DPH will be available in English and Spanish to eliminate a lack of understanding due to a language barrier.

Birth to Three has contracts with three centers that specialize in infants that are hard of hearing or deaf.  The centers are the New England Center for Hearing and Rehabilitation (NECHEAR), the American School for the Deaf (ASD) and CREC Soundbridge. Once referred to Birth to Three the parent is not only dealing with the emotions of having a newly diagnosed infant with a hearing loss, they are inundated with information and language that may be new to them. One of the many decisions a family has to make is to select the EI program that they want their child enrolled in. This project will target the parents of infants with a diagnosed hearing loss by providing the Service Guideline for Families of Infants that are Deaf of Hard of Hearing (available in English and Spanish) for them to use as a guide in making a program selection for their child. The Service Guideline presents objective information about the philosophy and services of each of the three Birth to Three programs and offers other resourceful information for families to make informed decisions about treatment and services.

Goal 7 (Lost to follow-up): This project will target infants that were discharged without a hearing screen and/or infants that referred from the initial screen who are in need of follow-up and did not appear for diagnostic testing. The children will be identified through statewide tracking reports. DPH will hire additional support staff through this project and will notify the child's primary care provider of the need for screening and/or testing. Pamphlets will be created for hospital screening staff to distribute to all parents of infants in need of diagnostic testing to stress the importance of the need for follow-up.

6.  Needs Assessment: There are approximately 45,000 births per year in CT. CT has 29 birthing hospitals and one birthing center, all of which are conducting UNHSI.  Based on national refer rate averages of 2 - 4 %, CT can expect to identify 450-900 children with hearing loss each year.

Research has proven that early hearing detection and intervention is essential in preventing speech and other delays in a child. CT's UNHSI program goals are consistent with and exceed the Joint Committee on Infant Hearing (JCIH) position statement benchmarks.  The overall goals for UNHSI program in CT are to: 1) screen all infants at birth before discharge, 2) conduct diagnostic testing within two to four weeks of the initial screen and 3) enroll in early intervention by four months of age (see Appendix M, Service Delivery Flow Chart).  Since the implementation of UNHSI in CT on July 1, 2000, twenty infants have been identified with bilateral hearing loss. All infants were screened, diagnosed and enrolled in Birth to Three by an average age of 1 1/2 months. Fifteen infants have been diagnosed with a unilateral hearing loss, and have no formalized follow-up system in place.

Goal 1 (Screening): Through site visits and surveys to hospitals the UNHSI staff identified that CT lacked consistency and standardization in the screening methods used. Three out of seven OAE based programs in CT are in large hospitals with 1900-2700 births per year. 23 hospitals conduct ABR screening only, eight of which are the smaller hospitals with less than 1000 births per year. Four facilities utilize the two step screening and have both OAE and ABR equipment.

OAE screening is sensitive to amniotic fluid or debris that may be present in the ear canal shortly after birth. The shorter hospital stays do not allow hospital staff the opportunity to wait to screen the infant after the fluid has cleared. Statewide tracking has identified an average refer rate of 17.5 % in hospitals that utilize OAE screening only, despite multiple screenings prior to discharge. This creates increased false-positive rates and needless parental anxiety. Overall, a total of 9,586 infants were referred for diagnostic testing and yet only 35 (14%) children were diagnosed with an actual hearing loss.  The other 86 % of the infants that were referred to an audiologist for diagnostic testing, had an OAE screen conducted within one month of birth and passed, and did not require diagnostic testing.

ABR screening measures brainstem response to sound emitted in the ear canal and is not as affected by fluid in the ear canal. Statewide tracking has revealed that there is clearly a consistently lower refer rate in the hospitals that are conducting ABR screening versus OAE. The ABR based programs have a referral rate of 7.7 %. Although these figures are higher than the 2-4 % refer rate that DPH had expected to see, this is partly due to the learning curve expected with a new program. It is anticipated that the rates will decrease as hospital staff becomes more proficient in screening and when the state tracking system becomes more familiar.

Through this project CT will standardize the screening methods throughout the state to ensure that all infants that do not pass the first screening have an ABR conducted prior to discharge. It is expected that this will increase the number of infants that pass the screening before discharge, will significantly lower the false-positive rates and reduce unnecessary parental anxiety.  Challenges include the assurance that all hospital screeners receive the necessary training needed to conduct ABR screening and that hospital staff are educated about the program guideline changes. The distributors of the ABR equipment will provide onsite training to appropriate hospital staff and DPH will revise the UNHSI Guidelines to reflect the changes in screening protocols and will distributed them to the birth hospitals. Hospital staff will be educated on the program revisions through ongoing follow-up meetings with DPH in 9/01 and 6/02.  Through statewide tracking DPH will track infants beginning with screening and through enrollment into early intervention.

Goal 2 (Diagnostic testing): This project will expand the existing diagnostic testing centers to include two areas in the state that lack services. The first targeted area will be an inner city with approximately 2876 births per year. The Easter Seals Foundation of Waterbury has an audiologist that specializes in working with infants and young children, but does not have the necessary equipment to conduct a diagnostic ABR. The second Center is NECHEAR (a Birth to Three provider) and will provide services to the rural, eastern part of the state, which has approximately 1980 births per year. Available diagnostic testing centers in these areas will fill gaps in the service availability and will make follow-up care geographically more accessible to families. Lack of accessibility poses a problem for families that lack transportation and increases the likelihood that a child will be lost to follow-up.

The challenge will be to increase public awareness of the availability of the diagnostic testing centers available in these areas. Current successful strategies in the past have been meetings with DPH and mailings to health care providers. This assures that the entity that makes the referral has the appropriate information needed to identify locations for diagnostic testing. The list of diagnostic testing centers will be revised to include the two new locations and will be distributed to birth hospitals, audiologists and primary care providers.

Goal 3 (Audiologist training): Prior to UNHSI program implementation in CT, DPH mailed surveys pertaining to newborn hearing screening to all licensed audiologists in the state. Some audiologists reported that they conducted diagnostic testing of infants through behavioral observation only. Others reported that they administered sedation to newborns in a non-medical setting. As a result of the surveys, the CT UNHSI Task Force developed standards for audiologists to follow when conducting diagnostic testing of infants in CT. The DPH adopted those standards and used them to identify the centers that had the ability to conduct diagnostic testing of infants. Of the 212 licensed audiologists in the state, 15 were identified by DPH as having met the Task Force recommendations to conduct diagnostic testing of infants. The names, addresses and telephone numbers of the 15 audiology centers were put on a laminated list and were distributed to birth hospitals, all licensed pediatricians, family practitioners and audiologists licensed in the state.

The audiologists send reports of diagnostic testing to the DPH and the results are entered into the state tracking system (Hi*Track). Review of diagnostic testing reports revealed that some audiologists conduct low frequency tympanometry when high frequency was indicated, others do not perform bone conduction testing when appropriate, and some are hesitant or reluctant to make a diagnosis of hearing loss in a child. All of these factors result in delays in diagnosis and intervention.

Audiologists have expressed an active interest in participating in any training available for diagnostic testing procedures in infants. The main focus for education and training through this project will be on the 15 audiology centers that are currently conducting diagnostic testing on infants that refer from the UNHSI program (and the two new centers) to ensure standardized, consistent education. Funding will enable audiologists from the 17 centers to participate in the training offered by the National Early Hearing Detection and Intervention (EHDI) Technical Assistance (TA) System.

Tracking and follow-up by DPH UNHSI program staff will ensure that all children are referred both to the Birth to Three and CSHCN programs in the timeframes established by UNHSI program guidelines (within two days of identification). Both the Birth to Three System and the CSHCN programs pay for the cost of diagnostic testing, audiological follow-up and hearing aids and equipment for eligible children. DPH will monitor the UNHSI program data to ensure that no child is denied care because of lack of health insurance and that all children have access to a medical home.

Goal 4 (Early intervention): The Birth to Three eligibility requirements reflect that a child must have a 40 dB hearing loss or greater, bilaterally to qualify for services. These stringent requirements may exclude some children in need of follow-up. Infants with a primary diagnosis of unilateral, mild or moderate hearing loss (or no hearing loss with the presence of risk indicators, i.e. hearing infants of deaf parents), that do not meet the Birth to Three program eligibility requirements are clearly at risk for speech, language or developmental delays (See Appendix I, Risk Indicators). From 7/1/00 through 3/31/01 fifteen children have been diagnosed with a unilateral hearing loss.

This project will address the need for an ongoing follow-up program for children identified through UNHSI that are at risk. Families of these infants will be offered the opportunity to participate in the ASQ program (explained under Methodology). The challenge faced by DPH is to educate the audiologists that the ASQ program is available to infants with unilateral hearing loss, mild loss, moderate loss or for those with other risk factors. Meetings with DPH have been successful in the past in educating the audiologists from the diagnostic testing centers as to program guidelines and will be ongoing throughout the four years of this project.

Goal 5 (Medical home): A study conducted by P.W. Newacheck at the University of California in 1998, identified that 18% of children between the ages of 0-18 years old have special health care needs. Although CT has a well-established Birth to Three referral line and program, there previously has been no mechanism in place to assure that children with special health care needs, identified through the Universal Newborn Hearing Screening program, are referred to the CSHCN program. This especially impacts those children who are not eligible for Birth to Three services. Through the Child Serve project and the DPH CSHCN Registry, multiple state agencies are in the process of creating a central line for referring CSHCN for care and services. Through this project all infants with any degree of a diagnosed hearing loss and/or those at risk for hearing loss will be referred to both the Birth to Three System and the CSHCN program. The referrals will be made through a designated telephone line at Infoline (already in place for Birth to Three referrals). All families will be screened for adequate health insurance coverage, linkage to a medical home and other necessary family support and services.

Goal 6 (Cultural competency): According to the 1990 Census data CT has a population that is 16 % Spanish speaking. The UNHSI program has developed linguistically competent educational brochures for non-English speaking families of infants that are diagnosed with a hearing loss. The Birth to Three System has developed a Service Guideline for Families of Infants that are Hard of Hearing or Deaf. The Service Guideline is available in nine different languages. Through this project DPH will continue to make these and other materials available in English and Spanish to empower families with the information needed to make informed decisions.

Goal 7 (Lost to follow-up): The UNHSI program has 1.0 FTE Program Manager and a 0.5 FTE Research Assistant to manage the day to day operations of the program. The program does not have the adequate support staff necessary to track and locate infants lost to follow up. Through this project DPH will hire support staff to assist with the implementation of a Child Find Program to track and locate infants that missed the initial screening or are lost to follow-up. Through Hi*Track staff can generate reports on infants in need of an initial screen. Audiologists report diagnostic testing results to DPH and also indicate whether the family did not show for a scheduled appointment (see Appendix K, Reporting Form). Through statewide tracking, UNHSI program staff will identify these infants, contact the infants primary care provider (PCP) to alert them that the child is in need of the initial screen or diagnostic testing. They will receive information on where the family can bring the child for a screening or testing. The additional staff will attempt to locate any family that can not be located due to an address, name or PCP change by accessing the Immunization program, CSHCN program and/or Women, Infants and Children (WIC) databases within the DPH. The Child Find Program will increase the number of infants that receive screening at birth, diagnostic testing and subsequent follow-up care.

7. Collaboration and Coordination: The UNHSI program has demonstrated the ability to work with a broad range of consumer and professional groups. Internally the UNHSI staff works collaboratively with Newborn Laboratory Screening Program and the CSHCN Registry program staff.  This collaboration will assure that children identified with a metabolic disorder or a hearing loss will be referred to the CSHCN program thereby significantly increasing their access to available services and linkage to a medical home.

Internally, the DPH UNHSI program manager has worked collaboratively with the State Department of Information Technology (DOIT) on developing the internet based reporting system for hospitals to report hearing and lab screening results to DPH in a secure, timely manner.  DOIT staff serves as a liaison to the UNHSI staff in the electronic transfer of data from the birth hospitals to the Hi*Track data management system. Hospitals have access to a telephone “Help Desk” which is staffed with DPH personnel. The “Help Desk” enables hospital staff the opportunity to get technical assistance on the electronic reporting of hearing and lab screening results to DPH.

DPH has utilized the Family Advocate to review educational materials with parents of CSHCN at focus and advocacy groups. This assures that the UNHSI program materials are “family friendly” and enables parents an opportunity to participate in the development of the resources.

Through six conferences and ongoing onsite visits to all birthing facilities in the state, the UNHSI Program Manager has established strong working relationships with the hospital nurse managers.  The nurse managers communicate with the UNHSI Program Manager frequently by telephone and/or e-mail with any questions pertaining to newborn hearing screening. Collaboration through this project will focus on the birth hospitals that conduct OAE screening only to assist them in acquiring the necessary screening equipment (ABR) to conduct two step screening. Individual onsite visits to each of the hospitals will be conducted by the UNHSI program manager to assist them in the transition from one-step screening to two-step screening.

The DPH has established a partnership with The Easter Seals Foundation and the NECHEAR to provide diagnostic testing services to areas in the state that currently lack the services.

Prior to the UNHSI program implementation on July 1, 2000 the DPH worked with the UNHSI Task Force to identify audiologists that have the ability and desire to conduct diagnostic testing on infants. The UNHSI Task Force identified the battery of tests that are needed to conduct audiological diagnostic testing of infants.  The DPH mailed questionnaires and surveys to all licensed audiologists in the state to identify those that met the Task Force recommendations. The final list of audiologists was distributed to all health care providers throughout the state and is utilized as a guide when referring infants for diagnostic testing. Additionally the Task Force members collaborated with the DPH and conducted training sessions with the audiologists and birth hospitals, to educate them on the UNHSI program Guidelines, reporting requirements, time frames for testing and the referral process to Birth to Three and the CSHCN program.

The UNHSI Program Manager is a member of the Task Force. The group continues to meet monthly to collaborate and plan training activities based on needs assessments to discuss gaps in services, program compliance and discuss mechanisms to disseminate information. The UNHSI Task Force's enthusiasm and commitment to UNHSI has been a vital force in the success of the program. Toni Brancia-Maxon, the EHDI TA System Region 1 Representative, is a member of the UNHSI Task Force and will work collaboratively with the UNHSI program manager to facilitate training for audiologists on diagnostic testing of infants as outlined in this application.

DPH collaborates extensively with the DMR, Birth to Three System which is the Lead agency for the Individuals with Disabilities Education Act (IDEA), Part C. Presently, all infants with a bilateral hearing loss of 40 dB or greater are referred to the Birth to Three Referral Line and are automatically eligible for services. Through this project all infants with any degree of hearing loss and/or the presence of risk factors will be referred to Birth to Three. The DPH and the DMR will collaborate on expanding the ASQ program (already in place with Birth to Three) to families of infants with hearing loss or risk factors who do not meet the eligibility requirements. The referrals will be made by the audiologists that conduct the diagnostic testing of the infants. The UNHSI Program Manager confirms an infant's enrollment (including age at enrollment) into the Birth to Three system by telephone with the Birth to Three Director. This assures that the DPH is able to track infants from the screening process, through the attainment of early intervention services.

The DPH and the DMR will conduct training with audiologists, all birth hospitals and primary care providers throughout the state to inform them of the expansion of the ASQ program.

The DPH and Birth to Three developed an informational newborn hearing screening brochure for parents (at a grade 4 reading level), which was made available in both English and Spanish. The brochures identify normal speech and hearing development, explain the different types of hearing screening available, and answers commonly asked questions. The brochures have been distributed to hospitals throughout the state and are given to all patients giving birth. DPH recently revised the brochure, making it more culturally diverse. The revised brochures include a statement that clearly identifies that all hearing screen results are forwarded to the DPH for tracking and follow-up (see Appendix H, UNHSI Brochure).

Through this project an infrastructure will be in place to accommodate the referral of CSHCN identified through UNHSI to one of the two CSHCN centers located in Hartford and New Haven. All children referred to Birth to Three will be dually referred to the CSHCN program. The goal of the CSHCN program in CT is to assure that every child in the state with special needs is referred to a CSHCN program to receive care coordination and other services.

The DPH will work collaboratively with the American Academy of Pediatrics (AAP) CT Chapter to disseminate information to the health care providers about the UNHSI program and expansion of the ASQ program. The AAP has agreed to have a member represented on the UNHSI Task Force and recently participated in the NCHAM TA Workshop in Salt Lake City, Utah, which offered guidance in the writing of this proposal. The AAP has endorsed this project as evidenced by a letter of support. (see Appendix E, Letters of Support).

The CT Chapter of Self Help Group for Hard of Hearing People (SHHH) is working collaboratively with the DPH to develop a brochure for families outlining the resources available in the state for children that are deaf or hearing impaired. Both the CT and National Chapters of SHHH have provided a letter of support for this project. (see Appendix E, Letters of Support)

The UNHSI Program Manager is an active member of the Commission on Deaf and Hearing Impaired Advisory Board (CDHI) which meets quarterly. The Commission has a strong commitment to UNHSI and is currently working with the Department of Children and Family Services (DCF) to increase the availability of foster care to children that are deaf or hearing impaired. The CDHI provides sign language interpreters for deaf parents as needed.

A UNHSI video for health care providers was produced with funding by the CT Perinatal Association. DPH purchased and distributed the videos to all birthing facilities to use for staff development and training and utilized this video as part of the training for health care professionals (see Appendix J, UNHSI Video).

In March 2000, the UNHSI staff, in conjunction with the Birth to Three staff, participated in a conference that was sponsored by the CT Department of Education (DOE).  UNHSI staff presented information regarding the implementation of the UNHSI program to educators and parents of children with special health care needs throughout the state. The DOE has supported the UNHSI program and this project as evidenced in the letter of support (see Appendix E, Letters of Support). 

The DPH has built many collaborative relationships with health care providers in the community. UNHSI staff conducts site visits to the hospitals to provide technical assistance regarding the implementation of UNHSI. In addition, the site visits provide the DPH an opportunity to review facility protocols, observe screening and offer technical support as needed.

Other external collaboration includes linking with other state agencies through the involvement of SASH.  The committee was formed as the result of the passage of the 1997 HUSKY Law (Connecticut's version of Title XXI of the Social Security Act- the SCHIP). Health Care for Uninsured Children and Youth (HUSKY), CT's state insurance plan for uninsured children also provides supplemental insurance for children with special health care needs. The HUSKY Plus Physical (HPP) Program, was designed to mirror the state's Title V CSHCN Program.

The DPH Family Advocate is the Chairperson of the Birth-to-Three Interagency Coordinating Council (ICC) whose governor appointed membership includes: parents of children who are enrolled in the Birth-to-Three system, members of the General Assembly, a trainer of early intervention personnel, a member of AAP, state agency representatives, and approved providers of early intervention services.

Other external collaboration and coordination includes DPH participation in Healthy Child Care Connecticut (HCCC); an MCHB funded project, which enables the DPH to partner with the Office of the Governor through the Governor's Collaboration for Young Children. The goal of HCCC is to achieve optimal health and development for all children, including those with special health care needs, by guiding and supporting service integration between the child care community and health care providers, which is reflective of families' needs. HCCC is composed of over 50 representatives of organizations that play a key role in the planning and delivery of childcare and health care for children and families.

8. Goals and Objectives: The overall goal of this project is to avoid adverse consequences of hearing impairment by ensuring timely, standardized screening before discharge, diagnosis by two months and enrollment into early intervention by four months for all children in need. Optimal developmental outcomes will be achieved through a continuum of screening, diagnostic and intervention services that are family centered, community based, developmentally appropriate, coordinated and culturally competent. Start and end dates for achievement of these objectives are provided in the Project Activities Time Allocation Table. This project will address the following goals:

Goal 1: Ensure that all birthing facilities provide standardized newborn hearing screening prior to discharge. Objective 1: Assist (7) birthing facilities in obtaining ABR screening equipment. This will enable all hospitals to conduct two-step screening on all infants that refer from the initial screening. Activity 1: The UNHSI program will provide the necessary funding to (7) birthing facilities to enable them to purchase ABR screening equipment. The screening equipment will meet the JCIH standards and will include automatic pass and refer indicators that do not require audiological interpretation. Newborns that do not pass the first screen will be screened by the ABR method prior to discharge. The distributors of the equipment must include hands on training for the designated hospital staff. DPH will revise the UNHSI Guidelines to reflect the standardized screening changes and will provide inservice training to the 7 hospitals on the guideline changes. By February 1, 2002, CT will have standardized screening methods in place for the UNHSI program. Hospital staff will transmit screening results to the DPH by way of the internet reporting system. Outcome 1: The outcome of this objective will be a significant reduction in the false-positive refer rates from the birth hospitals. A decrease in referrals will decrease the number of families that experience parental anxiety from screening through diagnostics. The outcome will be measured by analyzing the screening data received from each hospital as well as audiology diagnostic testing reports.  

Goal 2: Fill gaps in services by providing the resources to two audiology centers to purchase diagnostic ABR testing equipment. Objective 2: By December 1, 2001 the DPH will have assisted in providing diagnostic ABR testing equipment to the Easter Seals Foundation of Waterbury and by December 1, 2002 to the NECHEAR in Hampton, CT. This will facilitate access and availability of service for families with infants in need of diagnostic testing. The audiologists from the centers will participate in the Regional Training sponsored by the National EHDI TA System and will be knowledgeable of current practices. The audiology center staff will receive training and will have an understanding of the UNHSI program Guidelines, referral process to Birth to Three and reporting requirements to DPH. Activity 2: By December 1, 2001 the DPH will have provided funding to The Easter Seals Foundation and by December 1, 2002 provide funding to the NECHEAR to purchase diagnostic ABR testing equipment. DPH will develop written agreements with the two centers as to how the money will be used. The equipment will be used to conduct diagnostic testing of infants that refer from the UNHSI program. DPH will conduct inservice training for the two centers to familiarize the staff with the UNHSI program guidelines. The list of diagnostic testing centers in the state will be revised to reflect the additional services and will be distributed to all birth hospitals, audiologists, pediatricians, family practitioners and community health centers in the state. Outcome 2: The outcome of this goal is to provide accessible audiological diagnostic testing services for CSHCN and their families in the two areas in the state that currently lack services. This outcome will be measured through statewide tracking and will monitor the number of infants that refer from the initial screening in these two areas and the number who receive diagnostic testing by two months of age.

Goal 3:  Support training for 17 audiology centers to promote quality and capacity in those providing diagnostic testing, to assure diagnosis by two months of age. The National EHDI TA System will sponsor the training. The training will provide web-based interactive materials and will include a hands-on workshop that enable participants to conduct diagnostic ABR's and other tests necessary to diagnose hearing loss in infants and children. It is anticipated that use of sedation and appropriate monitoring during sedation will be discussed. This training will enable the audiologists to have standardized training on the UNHSI program Guidelines and program expectations. It will facilitate the need for audiologists to be kept apprised of new technology available for infants with hearing loss. Objective 3: At least one audiologist from each of the 17 centers that conduct diagnostic testing of infants will participate in the training and will receive a certificate of completion to confirm successful completion. Activity 3: Funding through this project will reimburse no more than three audiologists from each of the 17 diagnostic testing centers in the state to participate in the National EHDI TA System training to assure that infants are receiving services from professionals trained in infant hearing. This will include reimbursement for the $150.00 cost of the course for those participants that successfully completed the training. DPH will receive a copy of the certification of completion from each participant prior to reimbursement. Outcome 3: The outcome will be provide standardized training to audiologists to enable them to accurately diagnose a child with a hearing loss by two months of age.

Goal 4: To have a mechanism in place to provide ongoing follow-up to infants who are identified at risk for hearing loss, including those not eligible for early intervention services. This goal is consistent with the National Agenda Indicator #3, which states that all children are screened early and continuously for special health care needs.  Objective  4: Infants that pass the hearing screen at birth , but have risk factors associated with hearing loss present, will be referred by the birth hospital to the Ages to Stages program. Audiologists from the diagnostic testing centers will refer all children, regardless of degree or type of hearing loss and/or any child with risk factors associated with hearing loss, to the Ages to Stages program with 48 hours of identification. Audiologists from the 17 diagnostic testing centers and birth hospital staff will receive training from DPH and will be knowledgeable about the Ages to Stages program. 95 % of all children with risk factors will be referred to the Ages to Stages program in year 1 of this project, 100 % will be referred in years 2-4. Activity 4: By the end of September 1, 2001 UNHSI staff will have planned and developed protocols for a system to provide ongoing follow-up to infants identified through UNHSI that are at risk for speech, language and developmental delays. DPH will have an agreement with the Ages to Stages program (already in place with DMR) to manage the program. UNHSI program staff will have created informational brochures (English and Spanish) for families and health care providers that explain the program. The brochures will include a written consent that the parent must sign to participate in the program. The family will be mailed age appropriate speech, language and developmental questionnaires on a quarterly basis (available in English and Spanish). The families will voluntarily complete the assessment tool and return it to Ages to Stages, where it will be scored by trained early childhood staff. Families will receive written results of the assessment. If the child scores satisfactorily on the assessment the family will receive that information in writing along with a list of fun, age-appropriate activities that the parent can do with the child. If the results indicate that the child is in need of further assessment, Ages to Stages staff will inform the family and ask if they would the child to be referred to Birth to Three for a comprehensive evaluation and developmental assessment. With parental consent, the infants will remain in the program until age 5, at which time the Department of Education and/or CSHSN Program will follow the child. The Ages to Stages monitoring will discontinue if the child is enrolled in the Birth to Three program or if at any time the parent wishes to terminate the monitoring. Ages to Stages will have a data management system in place to track the children and to determine the need for further evaluation. By the January 1, 2001 Universal Newborn Hearing Screening staff will have completed inservice training on the follow-up program to all birth hospitals, the 17 audiology centers that conduct diagnostic testing of infants, primary care providers and Birth to Three staff. The audiology reporting forms to DPH will be revised to include a mechanism to reflect the Ages to Stages referral (see Appendix K, Diagnostic Testing Reporting Form).  By January 1, 2001 the Ages to Stages program will be available for infants identified through the UNHSI program who do not qualify for EI but may be at risk for hearing loss. Outcome 4:The outcome will be to have a system in place to continuously screen CSHCN to provide prompt early hearing detection and intervention and to avoid the negative consequences of late identification of hearing loss. The outcomes will be measured through statewide tracking of audiology diagnostic testing reports and from reports received from the Ages to Stages program.

Goal 5: To assure that all hearing impaired infants and/or CSHCN are linked to a medical home and family support network. Objective 5: By December 31, 2001 all infants with any degree of a diagnosed hearing loss and/or those at risk for hearing loss will be referred to the Birth to Three System and the CSHCN program. All families will be screened for adequate health insurance coverage, linkage to a medical home and other necessary family support and services. Activity 5: All audiologists at the diagnostic testing centers will refer any infant with risk factors associated with hearing loss and/or those infants with any degree of hearing loss to the Birth to Three Referral Line, managed by Infoline. Trained Infoline staff will screen all families for linkage to a medical home, access to health care and other services that may benefit the family. All children will be referred to Birth to Three and the CSHCN program. Children enrolled in Birth to Three will have an interdisciplinary individualized family service plan (IFSP) developed. All IFSP's are developed in conjunction with, and signed by the infant's primary care provider, which confirms linkage to a medical home. Parents that choose to enroll in either program will sign a written consent for participation. All children enrolled in the CSHCN program are linked to a medical home. Outcome 5:  The expected outcome is for all CSHCN to receive ongoing, comprehensive care within a medical home. This objective will be measured through ongoing review of diagnostic testing reports received from audiologists to confirm that all CSHCN identified through UNHSI were referred to Birth to Three and the CSHCN program. Referral Line staff will send DPH quarterly reports on the numbers of infants identified through UNHSI who were referred to Birth to Three, the CSHCN program and the ASQ program. Additionally, the MCH block grant performance measure #03 requires DPH to identify the percentage of CSHCN in the state that have a medical home. This data will be used to further evaluate this goal.

Goal 6: The DPH will have culturally sensitive, linguistically competent informational and educational materials available for families to enable them to be informed in the decision making process. Objective  6:  All families will receive and understand written educational materials on the UNHSI program, the diagnostic testing process, early intervention options and the ASQ program.  Activity 6:  The DPH will provide informational brochures for all birth hospitals to distribute to parents. The brochures will provide an overview of the UNHSI program and will include excerpts from the Alexander Graham Bell Association Average Speech, Hearing and Behavior Checklist. DPH will develop pamphlets for families of any infants that refer from the initial screen and need follow-up testing. The pamphlets will stress the importance of follow-up testing, will explain the diagnostic testing procedures, identify ways to prepare the child for the appointment (i.e. avoid napping) so as to avoid medical sedation, and identify diagnostic testing center locations. The pamphlets will be distributed to all parents of infants that refer from the initial screening by the birth hospital, prior to discharge. This project will provide funding costs for printing and distribution of a Service Guideline for Families of Children that are Hard of Hearing or Deaf . The service guideline will empower families to make an informed decision as to the EI treatment options available and other family resources. All of the materials will be available for distribution by January 1st of each year of this project and will be available in English and Spanish. Outcome 6: Families will have knowledge of the UNHSI program, will understand the importance of EHDI and will be informed decision-makers throughout the process. The outcome will be measured through a review of annual patient satisfaction surveys.

Goal 7: Have an established Child Find program in place to locate infants that may be lost to follow-up. Objective 7: DPH will implement a program to identify and locate infants that have missed the initial screening and/or infants that may be lost to follow-up. In year one of the program the parents of 75 % of the infants discharged without a hearing screen will be contacted and will bring the child in for a screening. In years 1-4 of this project 100 % of all primary care providers will be notified of any child that has missed the initial screen and/or did not keep two consecutive appointments for diagnostic testing.  Activity 7: DPH will hire a secretary to assist the UNHSI Program Manager with the program activities. DPH will contact families of infants that were discharged without a screen in an attempt to have the child return to the birth hospital for a screening. The infant's primary care provider will be notified by letter of any child that did not receive an initial screen and/or did not appear for at least two diagnostic testing appointments. Outcome 7: Outcomes will be measured through statewide tracking and will record the number of infants lost to follow-up from the initial screening and diagnostic testing. The number of infants that were located and received services will be monitored. The point in the service delivery line that the infants were lost will be identified for UNHSI program quality improvement purposes.

9. Required Resources:  It is expected that the assistance offered through this project will enable CT to develop the tools to expand and improve the existing UNHSI program so that it will be self-sustaining at the end of this project. The resources requested through this project will only be used for the activities described in this application and the required fiscal and accounting procedures will be followed. The cost of this proposal is reasonable in that it will provide CT with a solid foundation and necessary tools to manage a comprehensive UNHSI program and to promote EHDI.

This project will require funding to purchase ABR screening equipment for 7 birth hospitals and diagnostic ABR equipment for two audiology centers. This will enable all CT hospitals to conduct standardized screening on all infants that do not pass the first screening and will provide diagnostic services to two areas in need.

The project will require funding for one staff position (1.0 FTE Secretary) to assist the UNHSI Program Manager with tasks associated with operating the UNHSI program in an efficient manner. Additional funding has been requested for a computer for the secretary and additional needed office supplies.  Funding requests also included the purchase of a fax machine with a dedicated line to receive information from birth hospitals and diagnostic centers.

Funding through this project will be used to pay travel, hotel and registration costs for audiologists from the 15 diagnostic testing centers to attend the National EHDI Technical Assistance System North East Regional Audiology Training workshop. This will provide standardized training to all audiologists identified in CT that conduct diagnostic testing of infants.

Additional travel requests include travel for two UNHSI staff persons to the MCHB National Conference in Washington, D.C., travel for the UNHSI program manager to the to the National EDHI Technical Assistance System (NE) Regional Audiology Training and annual conferences (locations to be announced) and travel for the UNHSI program manager to the NE Regional EHDI UNHSI program meeting (location to be announced). The NE meetings enable UNHSI Program Managers to share ideas and collaborate on issues specific to newborn hearing screening.

Funding for a total of four inservice training sessions for audiologists (one each year of this project) has been requested.

The printing costs for educational and informational materials for families and health care providers (i.e. the UNHSI brochures, brochures for families of infants that refer from the initial screen, ASQ program consent/brochure, laminated updated list of diagnostic testing centers and Birth to Three Service Guidelines) are included in the resources requested.

The development of a program to provide ongoing follow-up and monitoring to children identified as at risk through UNHSI will be a major focus of this funding project. The ASQ program will enable the DPH to ensure that these children are closely monitored for speech, language and other developmental delays and referred to early intervention for further evaluation if indicated.

The following goals will be met by using the required resources: 1) reduce the consequences of late identification of hearing loss in infants, 2) ensure diagnostic follow-up testing of all infants by two months of the initial screening, 3) reduce the rates of infants lost to follow-up, 4) provide educational training and culturally competent materials to families and health care providers, 5) ensure that care for each newborn is appropriate, accessible, family-centered, coordinated and culturally competent.

10. Project Methodology:  Comprehensive UNHSI program guidelines were developed by DPH and were distributed to birth hospital staff in December 1999. The guidelines written in accordance with national standards, addressed issues such as qualifications of the screener, training, equipment, program oversight, reporting results and quality improvement. The UNHSI Guidelines will be the standards by which the goals are set to carry out this project.

Goal 1: The UNHSI program will provide the necessary funding to (7) birthing facilities to enable them to purchase ABR screening equipment. DPH will have written agreements with each facility that will specify how and when the funds are to be used. The screening equipment will meet the JCIH standards and will include automatic pass and refer indicators that do not require audiological interpretation.  By February 1, 2002 all infants that do not pass the first screen will be rescreened with ABR screening equipment prior to discharge. The distributors of the equipment must include hands on training for the hospital staff responsible for screening. DPH will revise the UNHSI Guidelines to reflect the standardized screening changes and will provide inservice training to the 7 hospitals on the guideline changes. By February 1, 2002, CT will have standardized screening methods in place for the UNHSI program.

Biographical and hearing screening data is sent from the birth hospitals to the DPH via the internet on a virtual private network (VPN). The VPN encrypts the information for secure transmission to DPH. Security keys are assigned to each hospital staff person that is allowed access to the reporting system. Hospital staff opens an electronic file for each child born and the system automatically assigns an accession number (PKU Number). The accession number is a unique identifier specific to each child and is used in state tracking between the lab and hearing screening programs. Bar codes that include the accession number are printed for each child and are affixed to the filter paper used for Newborn Lab Screening specimen collection. There are three screens that hospital staff can access which include biographical data, hearing screening data and heel stick specimen collection data. The biographical data is shared between both DPH programs and is confidential. The internet data is downloaded daily into the Hi*Track data management system.

The outcome of this objective will be measured by analyzing the screening data received from each hospital. The number of births, number of infants screened before discharge, results and method of screening repeat screens, and referral rates will be monitored in the evaluation. Audiology reports will be monitored to determine false-positive rates. Referral rates of the number of infants referred for diagnostic testing will decrease and will not exceed 4 % as a result of this project.

Goal 2: Through this project DPH will fill gaps in diagnostic testing center services by providing funding to the Easter Seals Foundation of Waterbury and the NECHEAR to enable them to purchase diagnostic ABR testing equipment . DPH will develop a written agreement with the two centers as to how the money will be used. The equipment will be used to conduct diagnostic testing of infants that refer from the UNHSI program. DPH will conduct inservice training for the two centers to educate the staff on the UNHSI program guidelines. The list of diagnostic testing centers in the state will be revised to reflect the additional services and will be distributed to all birth hospitals, audiologists, pediatricians, family practitioners and community health centers in the state. The two centers will send DPH the diagnostic testing reports on all infants tested and will make the appropriate referrals to Birth to Three, ASQ and the CSHCN program.

Goal 3 Support training for 17 audiology diagnostic testing centers to assure quality and capacity in those audiologists providing diagnostic testing, thus  assuring diagnosis by two months of age. At least one, but not more than three audiologists from each of the 17 diagnostic testing centers will receive reimbursement from this project for participation in the National EHDI TA System Regional training. A majority of the training will be web-based and will include a two day onsite practicum. DPH will send letters to all diagnostic testing centers to inform them of the training and opportunity for reimbursement for successful completion. Audiologists that do not respond will be contacted by the UNHSI program manager and will be encouraged to attend the training.

The UNHSI program staff and UNHSI Task Force will have annual meetings with the audiologists throughout the four years of this project. Each session will be held in the early evening to facilitate attendance and will be at least four hours in length. The meetings will focus on program guidelines, the use of sedation, statistical reports, case studies, the referral process to Birth to Three and the ASQ programs, cultural sensitivity and assurance all families are linked to a medical home.

Goal 4: To have a mechanism in place to provide ongoing follow-up to infants who are identified as at risk for hearing loss. All children, with any degree of hearing loss and/or risk factors, will be referred to Birth to Three through an Infoline Referral number specific to Birth to Three. Infoline staff trained in early childhood development will screen the calls, obtain information and transmit each referral to the Birth to Three program staff.  Eligibility determination is conducted either by a diagnosed condition or by a multi-disciplinary evaluation of all five areas of development using a normed, standardized instrument.  Children with bilateral hearing loss of 40dB or greater are automatically eligible for Birth to Three services. Families of infants not eligible for Birth to Three will be offered the opportunity to participate in the Ages to Stages questionnaire (ASQ) program. The UNHSI staff will design and print the ASQ informational brochures (English and Spanish) in each year of this project. The brochures will include a written consent that the parent must sign to participate in the program. ASQ staff will be responsible for ensuring each family of an enrolled child has signed a consent. The family will be mailed age appropriate speech, language and developmental questionnaires on a quarterly basis. The questionnaires will be available in English and Spanish. The family will complete the questionnaires and return it to them ASQ staff. (see Appendix L, ASQ Sample Packet). Trained ASQ staff will score the questionnaires and will identify any child that may be in need of further assessment. Families will be notified in writing of the scored results. If the results indicate that a child is in need of further evaluation, the family will be asked if they would like to have the child referred to Birth to Three for a comprehensive evaluation and developmental assessment. If the results indicate that the child is progressing appropriately, the family will be notified and will be sent a list of fun, age-appropriate activities that they can do with the child. With parental consent, the infants will remain in the program up until age 5, at which time the child will be transitioned to the Department of  Education. The ASQ monitoring will discontinue if the child is enrolled in the Birth to Three program or if at any time the parent wishes to terminate the monitoring. ASQ will have a data management system in place and will send quarterly reports to DPH. The ASQ program for infants identified at risk through UNHSI will be fully implemented by January 1, 2002 and will continue throughout the duration of this project. All licensed audiologists and PCP's in the state will be mailed the brochures and information about the expansion of the ASQ program.

Goal 5: All infants with any degree of a diagnosed hearing loss will be referred to the already established Birth to Three referral line, managed by Infoline, as explained in Goal 4. Infoline will refer all children referred to Birth to Three, to the CSHCN program. Infoline staff will screen all families for linkage to a medical home, ease and accessibility of available services and verification of insurance coverage or lack of. Under or uninsured families will be referred to the CT Husky (SCHIP) program. If a child is eligible for Birth to Three they may also be enrolled in the CSHCN program, as the CSHCN program may offer services that are not covered by Birth to Three. If a child is not eligible for Birth to Three services, the referral to the CSHCN program will provide an opportunity for the family to attain care coordination and other services available through the CSHCN program.  CSHCN care coordinators will work with the family and link each child to a medical home and develop a plan of care. This will assure that all children identified through UNHSI are linked to a medical home. Families must give consent to participate in Birth to Three and/or the CSHCN program. When a child reaches 3 years of age and is no longer eligible for Birth to Three services, this plan will ensure a smooth transition and continuity of care from the Birth to Three System to the CSHCN program.

Goal 6:  DPH will make available culturally sensitive and linguistically competent educational materials for parents to empower families with the information needed to make informed decisions in all aspects of their child's care.  DPH will make available UNHSI brochures that explain the screening process, pamphlets for children that are in need of diagnostic testing, a Service Guideline with early intervention options, and an informational brochure for the Ages to Stages program that includes a consent. The State Latino and Puerto Rican Affairs Commission and CSHCN family focus groups will review all Spanish text materials for appropriateness and content. The outcome will be measured through a review of patient satisfaction surveys.  Patient surveys will identify that 95 % of all women giving birth will have knowledge of UNHSI before discharge. Surveys will identify that 85 % of the women who had an infant refer from the initial hearing screen will realize the importance of bringing the child for follow-up and diagnostic testing and will acknowledge that they received a pamphlet explaining the “refer” result. 100% of all children referred to Birth to Three will receive the Service Guideline for Families of Children that are Deaf or Hearing Impaired. 100 % of all families of infants referred to the ASQ program will acknowledge that they received an ASQ brochure and have an understanding of the program. A comparison will be made between survey results from year 1 and years 2-4 to determine if family knowledge and satisfaction of the UNHSI program has improved after the materials were distributed.

Goal 7: DPH will hire a Secretary to assist in tracking and locating the families of infants that were discharged without an initial screen and/or did not appear for at least two consecutive diagnostic testing appointments. Through statewide tracking UNHSI staff will generate reports on infants that were discharged without a screen and/or infants that did not keep appointments for diagnostic testing. UNHSI staff will contact the families by phone/letters and will ascertain whether the family has a scheduled appointment. Families will be given information on screening/diagnostic testing locations. Letters will be mailed to the infant's medical home for any child that missed a screening at birth or missed two consecutive follow-up appointments.

11. Evaluation Plan:  The UNHSI Program Manager will evaluate the seven goals of this project on an ongoing and annual basis unless otherwise specified.

Goal 1: Seven OAE based programs will have ABR screening equipment by December 2001. By January 1, 2002 all hospitals will have trained staff to conduct diagnostic testing and by February 1, 2002, CT will have a standardized screening program in place. The program manager will conduct onsite visits to each hospital to verify that they have acquired the ABR screening equipment and will monitor results sent to DPH for screening method. Each hospital will maintain written documentation that the appropriate staff received training from the vendor. Hospitals will conduct an ABR screen before discharge on 85 % of all infants that refer on the initial screen in year one, 90% in year two, 95% in year three and 97% in year four.

The UNHSI staff will generate quarterly reports from Hi*Track for each hospital. The number of infants that did not pass the first screen, the number of infants that received a second screen (and the method) the results of the rescreen  and overall refer rates will be evaluated. Audiology reports will be reviewed to determine the false-positive rate for each hospital.

Goal 2: In year one of this project 90 % of all infants referred to the Easter Seals Foundation of Waterbury will receive diagnostic testing by two months of age. In years 2-4 95 % of the infants that referred from UNHSI will receive diagnostic testing by two months of age from the two centers. Audiologists from the two centers will participate in the National EHDI TA training and will receive a certification of completion. Both centers will send DPH diagnostic testing reports on 100% of all infants that they serve. Both centers will make the necessary referrals to Birth to Three and the ASQ program for 100 % of children that may benefit. The number of referrals to the Easter Seals and the NECHEAR will be monitored to evaluate the effectiveness of the public awareness initiative.

Goal 3: By December 2001, 17/17 diagnostic testing centers will have at least one audiologist, and not more than three, participate in the EHDI TA System Training. Participants will receive a certification of completion that will be forwarded to the DPH for reimbursement for the training. Within six months of the completion of the training the UNHSI program will mail surveys to all participants to confirm the usefulness of the training. 85 % of all audiologists that participated will have found the National EHDI TA training useful.

The infants that referred from the initial screens conducted at birth will be tracked through diagnostic testing (through Hi*Track and audiology reports) to ensure that diagnostic testing is conducted within two to four weeks of the initial screen and that infants are not lost to follow-up. 80 % of all infants will receive diagnostic testing by two months of age in year 1 of this project, 85 % in year 2, 90 % in year 3 and 95 %in year 4.  DPH will review all audiology reports to confirm that 100 % of all infants with a diagnosed hearing loss were referred to Birth to Three or the ASQ program within two working days of identification, to evaluate the timeliness of the referrals.

Goal 4:  UNHSI staff will monitor all diagnostic testing results of infants with a diagnosed hearing loss to ascertain the number referred to Birth to Three or ASQ to evaluate the need for further education for the audiologists. 95 % of all children with risk factors associated with hearing loss will be referred to the ASQ program in year 1 of this project, 100 % will be referred in years 2-4.  UNHSI staff will review quarterly reports received from ASQ to evaluate the number of children enrolled and the number of children referred to Birth to Three for further evaluation, including age of enrollment, to evaluate the effectiveness of the ASQ program. With parental consent the DPH will receive developmental assessments on infants identified through the UNHSI program whom transition from Birth to Three to the Department of Education at 4 years of age, to evaluate the effectiveness of early hearing detection and intervention.

Goal 5: DPH staff will review audiology reports to confirm that 100 % of all children identified through UNHSI, with any degree of hearing loss, are referred to the Birth to Three Referral Line within two days of identification. Infoline staff will provide the UNHSI program quarterly reports of all calls to the Referral Line in which children were referred to Birth to Three and the CSHCN program. The UNHSI program manager will confirm a child's eligibility, enrollment and linkage to a medical home with both programs.

Goal 6: DPH will measure the outcome of this initiative through Patient Satisfaction Surveys that will be mailed annually to a sample of 10% of the families of infants who screened negative at birth and had no hearing loss, 10 % of families of infants that screened positive and had no hearing loss and 10% of families of infants who screened positive at birth and had a confirmed hearing loss to evaluate the impact on the family of a false negative result, satisfaction with services, participation in decision making, effectiveness of the educational materials distributed and to identify any gaps in services.

10 % of all pediatricians of infants who had a diagnosed hearing loss will receive a satisfaction survey about the UNHSI program. A comparison will be made between survey results from year 1 and years 2-4 to determine if family/ physician knowledge and satisfaction improved after the materials were distributed. 85 % of families/physician's will be satisfied with the program in year 1, 88 % in year 2, 92 % in year three and 95 % in year 4 of this project. The results of the surveys will be instrumental in the UNHSI Quality Improvement program, as they will define areas in need of refinement.

Goal 7: The objective will be evaluated through statewide tracking and will monitor the number of infants lost to follow-up from the initial screening and diagnostic testing. The number of infants that were located and received services will be monitored. The point in the service delivery line that the infants were lost will be monitored for patterns from any one particular entity.