MAINE
MATERNAL AND CHILD HEALTH IMPROVEMENT PROJECTS ABSTRACT
Project Title: Development of a Universal Newborn Hearing Screening Program in Montana
Project Number: CFDA 93.251
Project Director: Jan Baker Phone: 406-444-3617
Organization name: Montana Department of Public Health & Human Services
Address: P.O. Box 202951
Helena, MT 59620
Contact Person: Jan Baker Phone: 406-444-6858
Fax: 406-444-2606
E-mail: jabaker@state.mt.us
Project Period: 4 Years
From: 3/31/01 to 3/30/05
Organizational Setting
The Children's Special Health Services (CSHS) is administratively located within the Department of Public Health and Human Services, Family and Community Health Bureau. CSHS program is the Title V agency in the state for children with special health care needs and is submitting this proposal for Development of a Universal Newborn Hearing Screening (UNHS) Program in Montana.
Purpose
The purpose of the project is to assure all infants born in Montana receive screening for hearing loss before hospital discharge, receive appropriate assessment, diagnosis, early intervention services and participation in a medical home. In addition to the screening, we want to be able to track an infant's status through the process to intervention services and provide families with educational resource materials.
Challenges
Montana is the 4th largest state with a large rural and frontier population. Many of the births in the state occur in small facilities where there are between 50 to 300 births per year. The state currently does not provide coordination or technical assistance to the hospitals that have initiated their own UNHS programs. Standard screening protocols and uniform data collection have not been addressed on a statewide basis. Without a system of active reporting to the state and tracking of status, it is unknown just how many infants are lost to follow-up.
Goals and Objectives
The project will make financial assistance available to communities that provide a 25% match for the purchase of electronic hearing screening (otoacoustic emissions) equipment to initiate newborn screening. The objective is to screen at least 95% of infants by 2005. The project will provide all hospitals who are screening infants with the HI*TRACK data management system. The objective is to facilitate tracking of infants within the hospital making this a community-based project that will assure the infant has a medical home and to make reporting to the state an easy process. The project will provide educational materials to parents and providers. The object is to provide parents with information and resources available to them thereby assuring a favorable early intervention outcome for the infant with hearing loss.
Methodology
This project seeks to develop public/private partnerships with local hospitals through a 75%/25% purchase of hearing screening equipment. The state, with stakeholders, will develop a community-centered follow-up system to assure infants receive appropriate services. Contracting with a pediatric audiologist will be needed to help with developing protocols and procedures. Hospitals will partner with the state CSHCN program through use of a data management system to facilitate tracking and minimize the number of families that might "fall through the cracks" in the proposed system.
Evaluation
The results of this project will provide the data for the Title V MCH performance measures that are reported annually. In addition an established electronic link to birth certificate information in the Office of Vital Statistics through the CSHS database assures all births in the state have received screening. Contracting with the National Center for Hearing Assessment and Management (NCHAM) for external program evaluation will be used. We will rely on the expertise of NCHAM for guidance with revisions if necessary.
Text of Annotation
Project will develop and implement a Montana UNHS program with coordination at the state level. Project will assist in purchase of equipment for screening and provide a data management tracking system at the community level with linkage to the state. Give the state and communities a measurable means for determining numbers with hearing loss and if they are receiving intervention services.
Key Words
Universal newborn hearing screening, early identification of hearing loss, early intervention, medical home, community and family centered, system linkages, newborn metabolic screening linkage.
PROJECT NARATIVE
Background
Montana is a large, frontier state in the western part of the United States. It is the fourth largest state with an estimated population of 883,000 (or about 6-people/square mile). It also has the dubious distinction of ranking 49th in median household income. The state's birth rate has remained steady at about 11,000 births per year. There are 12 primary birthing hospitals including two situated on Indian reservations. There are seven Indian reservations comprised of eleven tribes. Two reservations, the Flathead and Rocky Boy have contracted their health services. The Blackfeet and Crow Reservations have birthing hospitals; Northern Cheyenne utilizes the Crow facility. The Fort Peck, Flathead and Rocky Boy people birth at public or private facilities.
In 1997 the Department of Public Health & Human Services (DPHHS) sponsored a videoconference open to all Montana professionals interested in developing a Universal Newborn Hearing Screening (UNHS) program. At that time, there were only three hospitals screening infants for hearing loss at birth utilizing a "high risk" register. Since that time, there have been meetings held by DPHHS personnel and key leaders in the state to further develop a 'grassroots' program. This core group became the UNHS Task Force. There are currently 15 hospitals screening newborns for hearing loss, but about 40% of newborns are not currently screened. The Maternal & Child Health (MCH) outcome measure regarding universal newborn hearing screening showed by survey that there were approximately 57% or 6,165 newborns screened in 1999. This means more than 4,000 newborns in Montana did not receive hearing screening. Developing and implementing universal screening has been the goal since the first statewide meeting, however there continues to be a lack of equipment at the local level, a lack of uniform data collection and standard protocols for screening and tracking every newborn.
Purpose of the Project
In the last several years, national consensus statements and guidelines have been developed advocating UNHS (NIH, 1993; Joint Committee on Infant Hearing, 2000; American Academy of Pediatrics, 1999; Healthy People 2010 Objectives, 1999). Research done by Yoshinaga-Itano (1999) confirms outcomes of treatment are most favorable when hearing impairment is identified early and intervention started prior to the seventh month of age. Screening based on risk characteristics only identifies approximately 50% of the infants and young children with hearing loss. The remaining 50% of infants and young children with hearing loss have no known risk factors. Late identification of hearing loss is a serious public health issue. Without performing a newborn hearing screening, national experience indicates many of these children would not be identified with hearing loss until 2.5 years of age. The results of late identification of hearing loss can be measured by significant delays in speech, language, social, cognitive and emotional development. Given the serious ramification of late identification of hearing loss, it is important to perform newborn hearing screening and then to make diagnostic referrals as soon as possible for infants who do not pass the screen. Research from the Marion Downs National Center (Yoshinaga-Itano) in Boulder, CO indicates that children identified at birth with mild to severe hearing loss who receive intervention before 6 months of age, perform at age level in language comprehension and expression and social development. Consequently, children with hearing loss who are diagnosed after six months of age and who do not receive intervention experience significant delays in both language and social development.
The State of Montana is seeking support for the purpose of planning, developing and implementing a sustainable statewide UNHS program. Our desire is to assure all Montana children are screened before hospital discharge, be connected with a medical home, receive appropriate evaluation by 3 months of age, and are enrolled in appropriate early intervention services before 6 months of age. These services will be family-centered, community-based, developmentally appropriate, coordinated and culturally competent.
One of Montana's initial charges will be to take the components that have been started at the 'grassroots' level and incorporate them into the infrastructure necessary to sustain the scope of the project.
Funding this proposal will enable the state to establish standard protocols for screening newborns in Montana before they leave the hospital. In addition it will enable communities to purchase equipment for the rural areas, provide technical assistance on screening, provide a tracking system for infants requiring audiologic evaluation and assure a state level role in assessment and policy development.
Organizational Experience and Capacity
The proposed UNHS Project would be administered through the Children's Special Health Services (CSHS) section of the Family and Community Health Bureau within DPHHS. CSHS section provides direct, enabling and population based services to the maternal and child population of the state. Services to the MCH population are described in the diagram shown in Figure 1.
Newborn screening services, including hearing screening, are included in the population based service category. Services provided by the CSHS section include coordination and quality assurance for cleft and craniofacial, metabolic, and neural tube defect outreach clinics around the state. In addition, infrastructure activities are occurring through the establishment of regional clinic coordination. CSHS staff has implemented an education/training component for clinic coordinators throughout the state including the two reservation-based clinics. These latter clinics are held in Indian Health Service facilities at Browning and Wolf Point through a memorandum of agreement as well as private physicians and dental offices providing a solid public/private partnership.
The CSHS section also supports the direct delivery of services to the special needs population by coordinating service delivery and eligibility with SSI, Part C and Medicaid staff in the Department. The section receives a listing of SSI eligible clients and assures client eligibility for SHS funded services. The section also coordinates and facilitates referrals to and from public health staff in the communities through their clinics and by direct communication with local public health providers.
The CSHS section has primary responsibility for monitoring and impacting the federal MCH performance measures related to Children with Special Health Care Needs (CSHCN) and their families. Section staff members are responsible for developing plans to address the goals and for monitoring and reporting the information on target attainment. The CSHS section is charged with monitoring and impacting the following CSHCN performance measures:
| The percent of State SSI beneficiaries less than 16 years old receiving rehabilitative services from the State Children with Special Health Care Needs (CSHCN) Program. |
| The degree to which the State Children with Special Health Care Needs (CSHCN) Program provides or pays for specialty and subspecialty services, including care coordination, not otherwise accessible or affordable to its clients. |
| The percent of Children with Special Health Care Needs (CSHCN) in the State who have a medical home |
| Percent of newborns in the State with at least one screening for each of PKU, hypothyroidism, galactosemia, hemoglobinopathies (e.g. the sickle cell diseases) combined. |
| Percentage of newborns who have been screened for hearing impairment before hospital discharge. |
| The degree to which the State assures family participation in program and policy activities in the State CSHCN program. |
The CSHS section houses the staff responsible for the Newborn Screening Program and Follow-up in our state. The section also administers the state special revenue funded contract for genetics services. CSHS staff partnered with the Montana Medical Genetic Program (MMGP) staff in 1998 to develop a proposal for a Centers for Disease Control and Prevention (CDC) grant to develop a Montana Birth Outcomes Monitoring System (MBOMS). The proposal was approved in early 1999, and the department is presently in the second grant year for that project which will develop a passive system of identifying birth defects beginning in January, 2000. This project, along with other CSHS efforts to link information with the Office of Vital Statistics will enable staff to more accurately and efficiently identify and monitor children with special health care needs in Montana.
As a part of developing an UNHS system, project staff will collaborate with a variety of agencies and groups. The Project Director will be Sharon Wagner, CSHS supervisor. The Project Manager will be Jan Baker, Newborn Screening Program Manager to assure the link and coordination with follow-up services and assistance. A contracted project coordinator will work with hospitals in implementing UNHS programs. The coordinator will ensure that collaborative activities with existing agencies are coordinated and appropriately focused. We will also contract hire a pediatric audiologist as a consultant to develop the protocols for the program and to help with regional meetings. National Center for Hearing Assessment and Management (NCHAM) will provide technical assistance in setting up the HI*TRACK (Hearing Identification TRACKing) data management system (Appendix A) for all the hospitals. The project will contract with NCHAM to develop evaluation activities to be used to guide the project. The external NCHAM evaluation will be in effect in year #2 as the first year will be planning and developing.
Administrative Structure
The Montana DPHHS is the government entity responsible for programs and services that safeguard the health and welfare of Montanans. DPHHS was created in 1995 by the Montana legislature, incorporating portions of four former state departments. DPHHS coordinates its activities with other state agencies and with many organizations throughout Montana to address the comprehensive problems of access to health care for all citizens. DPHHS is made up of nine divisions:
An organizational chart of DPHHS is included in Appendix B. The mission of the Health Policy and Services Division is to: Improve, preserve, strengthen and protect the health, well being and self-reliance of all Montanans.
The Health Policy and Services Division structure includes of five bureaus:
The Family and Community Health Bureau is the designated Title V agency. The proposed
UNHS Project would be located in the Children's Special Health Services Section, Family and Community Health Bureau, Health Policy and Services Division of DPHHS. CSHS provides services for children with special health care needs, including clinic services, referral and payment for services, and contracts for services such as case management with local health departments. CSHS also houses the newborn-screening program, and coordinates the contract for the statewide genetics program in our state. CSHS is also entering the second year of a CDC funded grant for the MBOMS and one purpose of the grant is to develop a data system, which will allow for early identification and monitoring of children with congenital anomalies. Due to the history and the natural link between the Newborn Screening Program and MBOMS efforts, CSHS is the appropriate home for the UNHS program proposed in this grant application. The UNHS project will link closely with both newborn screening and MBOMS. Through an agreement with the Office of Vital Statistics within DPHHS, arrangements have been completed for inclusion of hearing screening results on the electronic birth certificate. This became effective in September 2000. A copy of the agreement with Vital Statistics is included in Appendix C. This agreement also addresses the inclusion of a field for parental consent for contact with regard to birth defects and services available through CSHS. The MBOMS coordinator has been traveling to hospitals with the Vital Statistics staff to provide education on these new birth certificate fields. A brochure is currently being printed to give parents when hospital staff are speaking to the parents and filling out the birth certificate information. This is one example of collaboration currently going on.
The consent issue is always an important one and Montana has notified parents finding very few object to having screening or services provided for their infant. The information that has been gained through meetings attended by other states is hearing screening is part of the newborn package of standard of care at a hospital and a specific consent from the parent is not required. A religious exemption has always been accepted in Montana. Parents or guardians do have the right to refuse medical services based on sincerely held religious beliefs. A waiver of non-consent should be available for this purpose. A procedure should be in place to follow-up with any infant that is discharged without a screen.
The Family and Community Health Bureau budget of approximately $17.2 million also includes non-Title V funds, including WIC, Title X, Preventive Health Block Grant, CDC, CISS, SSDI and state general funds. The bureau staff continues to consider and explore how such various federal funding sources and intents may be melded to create dynamic and responsive programs that continue to adhere to the funding source requirements. The Bureau maintains contracts with local providers for MCH services including primary and preventive services for women, infants and children, Family Planning services and WIC.
Available Resources
Staff CSHS section has primary responsibility and expertise in working with children with special health care needs. The staff consists of a section supervisor, newborn screening program manager, two nurse consultants, a birth defects coordinator, a clinic coordinator, a fiscal manager and an office manager.
The newborn screening program identifies infants through laboratory screening tests for metabolic disorders, congenital hypothyroidism and cystic fibrosis. The newborn screening program also matches birth certificate information to infants who have been screened. These identified infants receive follow-up and referral to interdisciplinary specialty clinics. The follow-up of infants identified with hearing loss will be patterned after the existing newborn screening follow-up program.
MBOMS, which is a birth defects registry, is also a part of the CSHS section. As a part of the MBOMS grant, an integrated data system was designed for linking community partners and state agencies and allowing for sharing of information. The purpose of the MBOMS data system is for a statewide system of timely identification of specific birth defects. A second purpose is to improve services and follow-up of identified children. The CSHS section already had systems for follow-up of CSHCN children. All of this went into the design and development of a complex integrated data system as shown in Figure 2. The algorithm for UNHS (Figure 3) was developed to show the interrelationship with the community partners. Tracking and follow-up of identified hearing-impaired infants is a crucial part of an effective screening program. There is no point in screening if prompt follow-up and intervention do not occur.
Initial steps have been taken in cooperation with the Office of Vital Statistics to record hearing screening results on the birth certificate. The CSHS database currently in development will have the capability to download the birth certificate information on hearing screening into a Hearing Screening module to track/follow-up infants with hearing loss. The information from the HI*TRACK data system will also download into the hearing screening module. Portions of the new CSHS database are now in use.
Community Montana has developed a Task Force for universal newborn hearing screening. This task force is composed of physicians (neonatologists, pediatricians, otolaryngologists), audiologists, developmental psychologists, speech-language pathologists, DPHHS staff, Part C providers, parents, hearing impaired individuals, Office of Public Instruction staff, deaf educators, and public health nurses. (Appendix D) CSHS, in partnership with the state medical officer, has been involved in a grassroots effort to implement universal newborn hearing screening in the state. The section hosted three Task Force meetings that resulted in the development of a UNHS algorithm (Figure 3) and implemented check box additions to the birth certificate for tracking purposes on whether infants were hearing screened before discharge. They continue to work with audiologists and other professionals in the state to assure access to services for children with identified hearing abnormalities. The CSHS section expressed interest in technical assistance for UNHS program development from the National Center for Hearing Assessment and Management (NCHAM) and the Marion Downs National Center for Hearing. A CSHS staff member recently participated in the NCHAM 'Training the Trainer' Workshop.
The Office of Public Instruction will be a partner of this project. It has regional audiologists in the Hearing Conservation Program (HCP) program and they are available for links with our project to serve Montana children. The OPI program has screening equipment in four regions covering HCP areas 1,2,8; 3,4; 11 and 13. (See Appendix E)
Funds, Equipment & Facilities Fifteen of the 48 hospitals in the state have voluntarily implemented a policy of screening newborns for hearing loss. Three of these (St. Vincent's in Billings, Benefis East in Great Falls and Community Medical Center in Missoula) were screening only high-risk infants but now have changed to universal screening. In calendar year 1998 about 30% of newborns were screened but this meant 70% were not. The number screened increased to 57% in 1999. Hospitals currently screening are doing follow-up to some extent on their own. Some have modified the algorithm developed by the Task Force for their hospital use.
Some of the small hospitals have acquired partial funding to be used toward the purchase of equipment. If this money is matched with grant funds the necessary equipment can be purchased for use in these more rural areas.
There are audiologists and speech therapists available in all regions of the state to provide intervention and treatment for children who have a hearing loss. The number of pediatric audiologists in the state is unknown at this time but will be assessed at the start of the grant to determine what additional training is needed in Montana and if regional centers for assessment need to be developed. The Montana Medical Genetics Program (MMGP) has a contract with the Department of Public Health and Human Services to provide genetic screening or counseling through CSHS.
Technical assistance is available to Montana through the National Center for Hearing Assessment and Management, Utah State University in Logan, UT and through the Marion Downs National Center for Infant Hearing, University of Colorado in Boulder, CO.
Identification of the Target Population and Services Availability
The birth rate in the state of Montana has been constant at approximately 11,000 births per year for the last five years. It is currently estimated that up to 2% of all live births will result in a child with a significant hearing impairment. This could require follow-up of at least 200 infants a year. Although the majority of babies are born at larger more urban facilities, 36 of the 48 hospitals in the state have birthing facilities. Among these 36 hospitals, 30 deliver more than 100 babies per year and only 8 deliver over 500. In addition, there are approximately 50 babies born at home each year. UNHS has recently been initiated or is ongoing in 15 of these facilities (Appendix F) and resulted in over 6,000 newborns being screened this past year. The primary target population for the first year of the grant will be those infants born in hospitals where 50 or more babies are born each year. Through program expansion in following years, we will strive to make screening truly universal for every child born in the state of Montana.
A critical aspect of the screening program is the assurance that the newborns identified with hearing deficits have appropriate follow-up and intervention. Making the HI*TRACK data management system available to all hospitals screening infants will facilitate the process and assure infants won't be lost to follow-up. The Montana Office of Public Instruction has audiology coverage for all of the 56 counties and there is public health nursing available in many of these counties. This becomes critical when a baby whose parents reside in one of our more rural counties is born and screened in a more urban environment and requires follow-up. The program coordinator for the Universal Newborn Hearing Screening Program may contact the public health nurse regarding the infants needs and the necessary audiologic and/or intervention follow-up can be carried out. It is important to recognize that the rural and frontier nature of Montana results in the county public health nurse knowing about virtually every baby that is born in their county. This significantly enhances the ability to provide follow-up to our population.
Needs Assessment
In 1998 the UNHS Task Force first convened. After the first meeting, attempts were made by writing and telephone to determine which, if any birthing hospitals in Montana were already doing UNHS, which had plans to do so, and which were not yet considering it. At that time, only one hospital had already started a universal program and two more hospitals were exploring it. Subsequent meetings of the task force reviewed existing and developing UNHS programs, considered clinical procedures, follow-up intervention, tracking and other pertinent issues. Information from surrounding states that have UNHS programs was also collected and reviewed, as was data and information from the National Center for Hearing Assessment and Management and the Marion Downs Center for Infant Hearing.
No legislation pertinent to UNHS exists in Montana. The Montana legislature meets only every other year and there is no plan for any legislation during the 2001 session. Despite the absence of legislation and corresponding funding, the Task Force concluded that a statewide UNHS program should be developed. At some future time, state UNHS legislation may be considered but would be unlikely to receive funding from the legislature. General guidelines for both screening and intervention protocols have been initiated but need further development and refinement. A procedural algorithm was developed and will serve as a basis in project development. (See Figure 3)
Several barriers and special problems still need to be resolved. Most of these are imposed by the rural nature of Montana. These include geographic distances for travel related to training and monitoring; small hospitals without audiology staff; counties with very low birth rates; and home births. Funds for equipment purchase and a data management system, especially in the smaller facilities can also present a barrier.
It has become clear there needs to be state level involvement to address and manage these issues and provide for ongoing quality assurance, program development and maintenance. A CSHS tracking mechanism is in development using the birth certificate data and referrals and is close to full implementation. There are now 16 hospitals employing the electronic birth certificate and 11 more have completed training and will be on line very soon.
The Indian Health Service (IHS) hospitals at Crow and Blackfeet have long been associated with the state's Office of Vital Statistics and are among those employing the electronic birth certificate.
The Crow hospital began a UNHS program in late 1999 and report almost 100% of the newborns screened. The IHS is working on an agreement with Trinity Hospital in Wolf Point whereby the Fort Peck audiologist would screen all newborns there if Trinity can purchase equipment.
A Montana family resource guide to give families of infants with hearing loss has been drafted but needs to be finalized. After finalization it will be made available to parents at the hospital and to providers.
Uniform assessment and intervention guidelines need to be implemented along with necessary training and follow-up. We plan to rely on the assistance of NCHAM to develop this aspect. We have materials from other states programs, which are up and running at this time to help with this process. Additional program elements may still need to be considered, such as regional centers for screening, assessment and intervention.
Collaboration and Coordination
Since the Task Force first convened, there have been some preliminary efforts at collaboration and coordination. Sub-committees have outlined general screening and intervention guidelines, but no formal effort has taken place to implement them. Without a designated State UNHS coordinator, a well-planned and executed effort has not been possible. Sporadic efforts have occurred to try to avoid duplication of efforts by audiologists, the State School for the Deaf and Blind, Hearing Conservation Program and regional Part C agencies. Once the program coordinator is in place, creating uniformity will be a top priority. In addition, collaboration needs to occur with the Montana Speech/Language and Hearing Association, the Montana Audiology Guild, Indian Health Service, Associations for Pediatrics, Family Practice and Otolaryngology, hospital administrators, public health nurses, parent advocacy groups, third party payers and all relevant state agencies. Most of those listed have representation on the UNHS Task Force, so collaboration among them should be attainable if managed properly by the UNHS project coordinator. Developing a UNHS program in Montana is receiving favorable support at the community level. This is evident by the letters of support we have received for this project. (Appendix G) Lynne Sanford Koester, Ph.D., Professor, Developmental Psychology, Department of Psychology, University of Montana is a recent addition to the Task Force members. Dr. Koester had previously been employed as a Research Scientist at Gallaudet University for the Deaf. She was part of a project investigating the impact of early deafness on infants' social, emotional, cognitive, and language development within the contest of either deaf or hearing families. She has graciously offered her help and that of her graduate students for any research needed in the project.
Goals and Objectives
Hearing screening is only the first step towards the goal of early developmental intervention. Goals need to ensure timely diagnosis and intervention for all infants identified through newborn hearing screening. Our goals also need to promote developmental outcomes through family-centered, community-based, developmentally appropriate, coordinated and culturally competent services. The JCIH 2000 position statement established principles for operating an effective statewide Early Hearing Detection and Intervention (EHDI) program. These were rephrased at the NCHAM training workshop this fall into the following:
Goals for year one:
1. Establish standard protocols for UNHS program.
a. Assess the existing programs for protocols
b. Refine the current algorithm
c. Create, from the Task Force, a committee of interested people to establish standards for screening, assessment, amplification and intervention.
d. Pediatric audiologist/NCHAM to review protocols and offer guidance.
2. Increase the number of newborns screened and provide HI*TRACK data management system for all hospitals screening infants for hearing loss.
a. Partner with communities to enable them to purchase equipment for hearing screening
b. Provide HI*TRACK data management system and technical support to hospitals screening.
c. Determine hospitals with births greater than 50 not currently screening.
d. Create application for equipment disbursement
e. Select hospitals
f. Initiate regional meetings in order to discuss the protocols, identify resources and referral process. Bring in experienced pediatric audiologist to assist with process.
g. Increase percent of newborns screened each year
3. Educate public and private organizations, physicians and parents regarding the importance of Newborn Hearing Screening
a. Determine target audiences
b. Research existing health education materials and select appropriate examples for Montana UNHS program use
c. Print and disburse Montana family resource guide
d. Collect all existing baseline data to establish a basis for comparison of year-end evaluation measures
e. Meet with Part C program, with School for the Deaf and Blind, and with Office of Public Instruction
f. Conduct surveys as needed to determine resources available in Montana
Required Resources
As noted in the budget, UNHS funding will support the purchase of equipment, HI*TRACK data management system, personnel, and contractors necessary to implement the work-plan described in this proposal. The CSHS section has limited funding available to support the data system to track UNHS and this will complement the proposed program. A data analysis contract may need to be developed in the second or third year of the project.
The department supports an infrastructure that assures standard accounting procedures will be applied in the management of this and all grants managed by the department.
Project Methodology
An algorithm for UNHS (Figure 3) was developed by the Task Force and will serve as the basis for screening infants and the follow-up of those with hearing-impairment. This algorithm will be refined for use with the standard protocols that are developed for screening, assessment, amplification and intervention statewide. A pilot trial of the algorithm with a cooperating hospital will be tested before the end of the first year. The use of the HI*TRACK data management system will facilitate this process.
Results of hearing screening need to be communicated to parents and to the medical home. HI*TRACK system has features which would promote effective follow-up to parents and physicians. The system can also generate tracking reports for infants requiring follow-up screening or diagnostic assessment. Several states have developed clever and often colorful 'report cards' to give parents that have results of the hearing screening. Many hospitals have another card given to parents at the time of infant discharge with the next appointment already made for further assessment. The experience of other programs has enforced the need to actively follow infants who are identified to assure they are confirmed for the next appointment, rescheduled if appointments are missed and that the medical home physician knows exactly where the infant is in the process. Rapid turn-around is in the best interest of the infant with hearing loss. The public health nurses in Montana are a valuable resource because they have home visits with these infants and can get them for appointments.
The algorithm was developed to incorporate available state and local resources into a process assuring checks and balances to reach the project purpose of screening every infant before two months of age. As the quality assurance program CSHS will do the tracking and follow-up of hearing-impaired infants who require intervention.
Establishing standard protocols will be the responsibility of the audiologist hired for the project in collaboration with the project coordinator and the Task Force committee. The UNHS coordinator will be a contracted position and will be a necessary part in the first year objectives of the project. We are anticipating completion and distribution of the protocols before the end of the first year of the grant.
To increase the number of newborns being screened in the state, match-funds will be available to assist hospitals in obtaining the necessary screening equipment. We will consider the option to waive matching funds if evidence exists that this should be done. We will begin soliciting participation from hospitals with more than 50 births per year through an application process. If there are less than 15 hospitals requiring equipment, we will request participation from the less than 50 births per year group. We have a target date of less than six months after the grant is awarded to have the screening units ordered. Regional meetings will be set up to discuss and develop the standard protocols, surveys of resources available in the region and in the state, and the referral process. Newborn hearing screening is only beneficial if babies not passing the screen are provided with timely and appropriate audiological diagnosis. Not all audiologists have the interest or the equipment and experience to do diagnostic evaluations for babies from birth to three months therefore, a survey will identify those interested. The survey format could be similar to those previously used in Utah and Hawaii. Based on the survey, a list will be compiled and distributed to all birthing hospitals of audiologist recommended to do diagnostic evaluations on babies. It will be necessary to have the audiologists agree to report evaluation results to the state coordinator within ten days after completing the evaluation. In this way project staff will identify infants, who have not received diagnostic evaluation by the time they are two months old, and follow-up contact can be made.
As part of this project, the HI*TRACK software developed by NCHAM and currently being used in statewide programs in Utah, Arizona, Hawaii, Idaho and North Dakota will be distributed to all hospitals with UNHS programs. The software program provides the capability for hospital staff to track each infant's status relative to hearing screening, diagnostic assessment, referral to follow-up services and enrollment in intervention programs. It enables hospital staff to quickly:
Information from each hospital database will be electronically transferred at the beginning of each month to the state UNHS program manager, who will have a version of the software, which aggregates the information from each hospital into a state database. This data will be used by the state to assist with tracking and follow-up to ensure that all infants referred from the screening program receive timely and appropriate services. The state database will also be used to generate reports for quality assurance, technical assistance and program management.
For the education component of the project, target audiences will be determined as a cooperative effort involving the UNHS coordinator, CSHS staff and the Task Force. There are many educational materials available from others states currently screening. There are also materials available from NCHAM, Marion Downs National Center for Infant Hearing, American Academy of Audiology, American Society for Deaf Children, Utah Parent Center, National Campaign for Hearing Health, and Boys Town National Research Hospital. When the available educational materials have been reviewed, the Montana family resource guide will be assembled and printed. This guide will be distributed to parents with hearing-impaired infants and will be available at all screening facilities and with audiologists. An educational component of hearing materials needs to be in local arenas including WIC, prenatal clinics, doctor's offices, preschools and schools. There are many opportunities where UNHS and others can work together to achieve statewide education. The MBOMS coordinator has already been creating awareness for UNHS at the hospital level while doing an educational in-service on the new fields on the birth certificate. This in itself has generated an increase in the letters of support for this UNHS project.
Evaluation Plan
Since we acknowledge our lack of experience in establishing a statewide program for UNHS, we will rely on those with experience (NCHAM) to assist and guide us in final development of a solid plan of evaluation. We know several things we want to be able to demonstrate with a UNHS screening program in Montana. By the end of the four-year grant project we intend to be successful in all of the eight principles for an effective statewide EHDI program given in the JCIH 2000 position statement.
The long-term impact of this project will give the State of Montana assurance infants are identified with hearing impairment prior to 2.5 years of age; the ultimate goal is screening by one month of age. The 50% of infants without known risk factors who usually are not identified until later is expected to decrease with each year of UNHS. Lowering the age when infants are identified is a measurable outcome.
All infants (including home births) are screened for hearing loss by one month of age including infants in NICU
Screening all infants before discharge from the hospital is expected to be at 95% by 2004.
Infants referred from screening complete diagnostic audiological evaluation by 3 months of age
Through the state level of coordination and tracking the number of infants completing this stage of the process will be measured. If they have not completed this stage we have the number of infants 'lost to follow-up' or if the appointment is made but completion of this stage is pending.
Infants with identified hearing loss are receiving appropriate audiological, educational and medical intervention by 6 months of age.
Infants who receive intervention before 6 months of age perform at age level in language comprehension and expression and social development. This can be measured by using appropriate standardized testing.
All infants with hearing loss have a medical home
For the purposes of this project, a medical home is having a primary health care provider who conducts well-child visits with the child and is involved in the overall care required to meet the needs of the child. This can be measured through the state level tracking system by knowing where the child is in the process and at the same time, keep the program community-based to assure culturally competent services.
Families of children with hearing loss receive culturally competent support and are satisfied with the services they receive
The overall care of the infant would be interdisciplinary, recognized, building on "family-centered, community-based, cultural traditions" and provide informed choice.
By surveying families on the services provided they can tell us what is working and what needs some change. This has been successfully used by the CSHS section by asking parents how our services to children with special health care needs is rated by them. Having parent representation on the UNHS Task Force gives them the opportunity to voice their needs and help to develop a program that will do so.
A statewide data management system provides accurate information about program status and follow-up of infants needing EHDI services. Accessibility to data will be highly restricted to limited authorized personnel.
Tracking is the 'keystone' to having a successful UNHS program. The price is too high to loose even one infant and its family 'through the cracks' and have that infant suffer developmental delays because he/she has a hearing loss that should have had early intervention services. Using the HI*TRACK data management system gives the hospital a tool to track the infants screened and keep the program community-based. HI*TRACK also allows electronic transfer of data to the state system. The fields on the birth certificate will be serve as a check and balance with the HI*TRACK data system to see if all infants with hearing impairment are accounted for. The data in CSHS is all highly confidential and is limited to authorized personnel use only.
Information on hearing screening is effectively disseminated to relevant stakeholders.
The parent, the medical home and the state tracking system are the primary stakeholders when it comes to who needs to know the results of the hearing screening. An effective direct dissemination of information to the parent is by having the hospital give a hearing report card to parents as well as a referral appointment card before discharge. Additional educational information needs to be given to the parents of an infant with hearing loss and can be evaluated by the parent survey. The HI*TRACK data system will enable the hospital to send letters to the parent and medical home and to transfer information to the state level tracking system. We can also measure the number of infants' referred, the number seen and the number receiving intervention services to determine the effectiveness of the exchange of information.
Systematic evaluation activities provide timely and accurate data needed for program monitoring the quality assurance.
The measure of how effective a program is based in the data collected to show either an increase or decrease in numbers, satisfaction in services provided to the infant and its family, satisfaction in how the community views its partnership in the project to name but a few. Evaluating the data obtained as a result of the MT UNHS project will be used to address areas of community based needs. The use of an MCH Epidemiologist for data analysis to show trends and service implications may be considered in the third and fourth years of the project. The activities for evaluation in the first year are very concrete for example protocols are developed and the result is the protocols are in use. It is a planning and development year. The Activities Time Allocation Table lists year one activities, timeline and the result of the activity. To be successful, ongoing formative evaluation activities need to be integrated with implementation activities.
RESPONSE NARRATIVE
Children's Special Health Services of the Montana Department of Public Health and Human Services (DPHHS) is very pleased to have our UNHS application approved. We have received tremendous support from the regional resource, NCHAM and look forward to our continuing relationships with Karl White and Terry Foust.
(A) Examines and Eliminates Areas of Duplication Between Two Data Systems
Making sure that all babies who do not pass the newborn hearing screening receive appropriate and timely follow-up is a key component of this grant. The proposed tracking and follow-up system will make use of information from the Montana Electronic Birth Certificate and the HI*TRACK data management and tracking system being implemented during the first year of the grant. The way in which those systems will work together is described briefly below:
HI*TRACK System. As noted in the original application, HI*TRACK is a computer-based data management and tracking system which will be implemented by installing the software in each of the hospitals and at the DPHHS Children's Special Health Services. HI*TRACK interfaces with various manufacturers' screening units so that data entered into the screening unit (e.g., baby's name, medical record number, date of birth, etc.) can be transferred electronically into the HI*TRACK system. HI*TRACK maintains a record of which babies have been screened, the results of screening tests, which babies need follow-up, and the status on various follow-up tests; sends letters to physicians and parents; and generates various kinds of reports needed in tracking, follow-up, and quality assurance. As a part of the information maintained in HI*TRACK, the name of the primary care provider responsible for the baby at the time it leaves the hospital will be recorded. Once each month, this information will be transferred via disk or email to the statewide database maintained by Children's Special Health Services. Hospitals will be trained to use HI*TRACK to follow up on those babies who do not pass the screening test. However, the ultimate responsibility to ensure that babies receive appropriate tracking and follow-up will rest with DPHHS Children's Special Health Services, similar to what happens with heelstick newborn screening programs. The program coordinator for the project will work with hospital staff, primary care physicians, audiologists, and early intervention program (Part C) staff to ensure that babies receive appropriate follow-up.
Electronic Birth Certificate System. Although hospitals are supposed to enter information about every live birth into the HI*TRACK system, experience in other states indicates that this does not happen as well as desired. The best way to "populate" the HI*TRACK database is to link it to the Electronic Birth Certificate System, which is the legal record for all births. Therefore, a field has already been added to Montana's Electronic Birth Certificate to indicate whether the baby is screened. Information from this field will be used to cross check with the HI*TRACK database at the DPHHS Children's Special Health Services to ensure that all newborns are entered into the HI*TRACK system. During the first year of the project, this linkage will be done manually. During the second year of the project, after HI*TRACK has been operationalized in all hospitals, we will begin investigating a system for linking the Electronic Birth Certificate and the HI*TRACK system electronically. This is similar to
what is already done in Utah.
(B & C) System of Follow-up and Assign Responsibility and Link to Part C
Each hospital will be provided with the HI*TRACK data management and tracking system. The system will be used to track all infants through the screening process. Each infant will be entered into the database, screened and results recorded. Screening results are then provided to parents, referral sources and medical home providers through use of the data management system's reports and letters. All infants requiring follow-up screening or referral for diagnostic assessment are tracked through the process. Hospital follow-up and data management responsibilities include:
Hospital screening and tracking data is to be transferred to the DPHHS Children's Special Health Services on a monthly basis. This is consistent with the process used in other states such as Utah. This time frame allows hospital programs the time necessary to provide the follow up for which they are responsible as documented above. The transferred data will then be merged into the statewide database (maintained by Children's Special Health Services) from which program wide statistics will be compiled and analyzed.
In addition, the DPHHS Children's Special Health Services will ensure that each infant is connected with a medial home. This will occur through coordination with Montana's public health nurses who will make home visits and provide assistance in identification of a primary care provider and appointments. The State DPHHS will also ensure referral of each identified infant with hearing loss to the Part C program.
The Children's Special Health Services' data management and follow up responsibilities specifically includes:
(D) Revised Comprehensive Evaluation Plan
The project manager, in conjunction with the project coordinator will be responsible to ensure that project activities are completed in a timely manner, that appropriate progress is being made towards the objectives, and that all expenditures are consistent with the approved budget. Such monitoring of the project will occur as a part of the normal procedures for all Montana DPHHS projects. In addition, the project manager will report on project activities at each of the quarterly meetings of the Advisory Committee. As necessary, adjustments in activities and timelines will be made as a result of those discussions.
In addition to the monitoring activities described above, an external evaluation of the project will be conducted each year by the National Center for Hearing Assessment and Management (NCHAM). This evaluation will consist of five parts as described briefly below:
1. Questionnaire to Hospitals. Each hospital in the state will be asked to complete a questionnaire during each year of the project. Questions will be included about the hospital's activities with regard to screening, follow-up, referral for diagnosis, satisfaction with the program, obstacles which have been encountered, areas in which assistance is needed from the Montana DPHHS, and satisfaction with the assistance and support provided by the DPHHS. The questionnaire will be modeled after similar evaluations done in Utah and Idaho. Prior to collecting data, drafts of the questionnaire will be reviewed by members of the Advisory Committee to make suggestions for specific items to be included.
2. Analysis of HI*TRACK Data. Each hospital will use the HI*TRACK data management system to submit data to the State DPHHS on a monthly basis about the number of babies born, number of babies screened, results of screening, follow-up activities, and information about referral and diagnosis. This data will be submitted using the HI*TRACK data management system. The external evaluation team will analyze the state database each year to identify strengths and weaknesses of the program and areas where assistance is needed. In previous evaluations for other states, the analysis of HI*TRACK data has been useful in pinpointing areas where additional technical assistance and training is needed. For example, when inpatient refer rates are too high, it is frequently because too many people are screening babies or one or two screeners out of a group of seven or eight are having difficulty. Although this data is available to hospitals, they often don't appreciate its value for program improvement. Past experience shows that it is frequently helpful to have an external evaluation team review the statewide data to identify areas where assistance is needed.
3. Questionnaires to Parents. A random sample of parents whose babies were screened during the previous year will be sent a questionnaire regarding their perceptions about the screening program, what they see as the strengths and weaknesses, and any suggestions they have for improving the program. The sample of parents will be stratified to include those who passed the inpatient screening, did not pass the inpatient screening but passed an outpatient screening, did not pass either the inpatient or outpatient screening but passed the diagnostic evaluation. Questionnaires will be returned to NCHAM, and respondents will be assured of anonymity so they can be open about any concerns they have, as well as identifying aspects of the program that have worked well. The results of these questionnaires will be used to determine whether appropriate information and support is being provided to parents.
4. Questionnaire to Parents of Children Identified with Hearing Loss. Having a child identified with a hearing loss can be a traumatic experience for families. To determine whether there are ways the universal newborn hearing screening and intervention program can provide better information and support to parents of children identified with hearing loss, a questionnaire will be sent to all families whose children are identified with hearing loss. Because the period shortly after the child is identified can be very difficult, this questionnaire will not be sent until six months after the definitive diagnosis of hearing loss is made. Questionnaires will be returned to NCHAM, and respondents will be assured of anonymity so they can be open about any concerns they have, as well as identifying aspects of the program that have worked well.
5. Physician Questionnaires. A random sample of physicians who are listed in HI*TRACK as the primary care physician for babies who are screened will be sent a questionnaire assessing their attitude and knowledge about the universal newborn hearing screening program. In addition, they will be asked to identify strengths and weaknesses and suggestions for program improvement. Questionnaires will be returned to NCHAM, and respondents will be assured of anonymity so they can be open about any concerns they have, as well as identifying aspects of the program that have worked well.
Update on Advisory Committee
We have taken the many people who have been part of the UNHS Task Force and defined a core group to be referred to as the Advisory Committee. We wanted representation of specific categories of people on the committee and have identified the categories on the attached list. The Advisory Committee will function as a partner with Children's Special Health Services for the Montana UNHS project. They will have an important role in the following areas:
Review progress
Statewide communication
Address constituency concerns and bring them forward for discussion
References
American Academy of Pediatrics Task Force on Newborn and Infant Hearing. 1999. Newborn and Infant Hearing Loss: Detection and Intervention. Pediatrics 103 (2): 527-529.
Joint Committee on Infant Hearing. 2000. Year 2000 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs. American Journal of Audiology 9: 9-29.
Healthy People 2010 Objectives: Draft Copy, 1999. Office of Disease Prevention and Health Promotion, HRSA, Washington D.C.
NIH. 1993. Early Identification of Hearing Impairment in Infants and Young Children. NIH Consensus Statement. 11 (1): 1-25.
Universal Newborn Hearing Screening Guidelines. 1999. Massachusetts Dept. of Public Health
Mehl, A. and Thompson, V. 1998. Newborn Hearing Screening: The Great Omission. Pediatrics 101 (1): 1-6.
Yoshinaga-Itano, C., Sedey, A., Coulter, D., and Mehl, A. 1998. Language of Early- and Later-identified Children with Hearing Loss. Pediatrics 102 (5): 1161-1171.
Early Identification of Hearing Loss: Implementing Universal Newborn Hearing Screening Programs. HRSA. 1-26.
APPENDICES: Implementing Universal Newborn Hearing Screening Programs. NCHAM. 1-297.