Missouri MCHB Grant
MATERNAL AND CHILD HEALTH IMPROVEMENT PROJECTS ABSTRACT
Project Title: Integrated Services for CSHCN: Universal Newborn Hearing Screening
Project Number: CFDA 93.251
Project Director: Glenda Miller, MPH, BSN, RN
Phone: (573) 751-6252
Organization Name: Missouri Department of Health
Address: 930 Wildwood Drive, Post Office Box 570, Jefferson City, Missouri 65102
Contact Person: Glenda Miller
Fax: (573) 526-5348
E-mail/World Wide Web Address: milleg@mail.health.state.mo.us
Project Period: 4 Years From: 03/31/01 to 03/30/05
PROJECT ABSTRACT
Organizational Setting
The project will be conducted by the Missouri Department of Health, Division of Maternal, Child and Family Health (MCFH) and the Bureau of Genetics and Disabilities Prevention (BGDP) with assistance from the Bureau of Special Health Care Needs (BSHCN) and the Center for Health Information Management and Evaluation (CHIME). The project will be carried out under the direction of the Missouri Title V director. Close collaboration will be essential with the First Steps system, Missouri's early intervention system under Part C of the Individuals with Disability Act (IDEA). The Department of Elementary and Secondary Education (DESE) administers the First Steps system, and service coordination and case management is contracted to the BSHCN and the Department of Mental Health (DMH). A contract audiologist at Southwest Missouri State University (SMSU) will also provide assistance to develop a training system and provide technical assistance. Since the passage of the law, the BGDP has established a mufti-disciplinary advisory committee to develop draft rules and guidelines for hospital screening programs.
Purpose In 1999, the Missouri General Assembly passed a comprehensive universal newborn hearing screening law. The law established the Universal Newborn Hearing Screening Program (UNHS) requiring screening of all infants prior to hospital discharge and mandates the BGDP to oversee diagnostic follow-up. The primary purpose of the proposed project will be to implement a system of universal newborn hearing screening, develop data management, tracking, and follow-up systems in Missouri to ensure diagnosis of congenital hearing loss by three months of age and entry into early intervention by six months of age.
Problem
Late identification of hearing loss may result in delays in language, speech, social, cognitive, and emotional development. While Missouri has made progress toward universal physiological hearing screening, implementation of a statewide system of reporting screening results and timely follow-up has been more sporadic. Although there is some information regarding the number of newborns born in the state that have actually had their hearing screened and referred for additional follow-up, there is little information known about how many were diagnosed as deaf or hard of hearing, or at what ages they received amplification or entered into early intervention. There is also a tremendous lack of public awareness of the importance of newborn hearing screening, a need for professional continuing education to serve this population, and a need for mechanisms to sustain a system of screening, follow-up and intervention.
Goals and Objectives
Goal 1: To provide all newborns born in Missouri with hearing screening services before hospital discharge when possible or before three months of age.
Goal 2: To develop a system of follow-up, referral, tracking and case management to assure linkage to early intervention services and a medical home.
Goal 3: To develop a web-based data management system for use by the provider network to report the results of newborn hearing screenings with other newborn screenings information in the Missouri Health Strategic Architectures and Information Cooperative (MOHSAIC) data systems.
Goal 4: To provide training to appropriate hospital or birthing center personnel to implement the universal newborn hearing screening program and data management software.
Methodology
Activities to accomplish goal 1 will include the following: establish newborn hearing screening programs in all hospitals; develop a plan for screening babies born in ambulatory care centers and at home; develop a plan to monitor those infants who pass newborn hearing screening, but have high risk factors for progressive hearing loss; standardize parent consent forms, waivers, develop informational materials used by the hospitals and ambulatory care centers; standardize testing and procedural protocols and through the Department of Insurance (DI) and Department of Social Services (DOSS), and develop a plan for reimbursement of providers and third party payers that perform hearing screening after the infant has been discharged from the hospital or conducted in other health care delivery settings.
Activities to accomplish goal 2 include collaboration with CHIME to develop an electronic reporting and surveillance system. Training of First Steps system service coordinators in the BSHCN and DMH to assure access to service coordination, entry into early intervention services, and linking families with support programs will be accomplished.
Activities to accomplish goal 3 will include the following: purchase Neometrics data management system for DOH and birthing hospitals and centers, train MDOH staff and hospital staff on use to the data management and surveillance system; provide newborn hearing screening data management software to hospitals to track newborn hearing screening results; and coordination with CHIME to integrate genetic and metabolic screening, birth certificate registry, immunization records and census information.
Activities to accomplish goal 4, BGDP will include: providing training on the use of screening equipment to hospitals located in communities where an audiologist is not available; providing education to increase awareness of hearing loss in children and its implications to hospital communities; and providing additional training (beyond that provided by the manufacturer or their distributor) to hospitals about hearing screening when requested.
Evaluation
The addition of newborn hearing screening fields into the Neometrics data management system will serve as a check for accuracy in the aggregate data in the data management system.
Text of Annotation
The purpose of the proposed project is to implement a statewide system of newborn hearing screening, diagnosis, and intervention to ensure entry of infants with hearing loss into appropriate intervention by six months of age. While Missouri has made significant progress toward universal screening, the tracking of screening results, data reporting and appropriate follow-up have been sporadic. The project is designed to ensure screening of all newborns born in Missouri, link these children to medical homes and appropriate intervention services, educate professionals to serve this population, and to provide a mechanism for continuous support of these activities beyond the project period.
Key Words: Congenital hearing loss, newborn hearing screening, web-based reporting
PROJECT NARRATIVE1. Purpose of the Project
Universal newborn hearing screening will be implemented statewide in Missouri in January 2002 as a result of legislation passed by the Missouri General Assembly in 1999. Responsibility for newborn hearing screening is placed with the Missouri Department of Health (Department, DOH). Hospitals and ambulatory surgical centers are mandated to perform hearing screening on newborns before discharge from the facility. The law requires that the physician or person who professionally undertakes the pediatric care of the infant shall ensure that the newborn hearing screening is performed within three months of the date of the infant's birth. Individuals representing audiology, hospital administration, nursing, deaf individuals, and state departments who are involved with individuals with hearing loss were concerned with and successful in moving the state towards universal newborn hearing screening.
Missouri's legislation requires any newborn with a confirmed hearing loss be referred for early intervention services through Part C of the Individuals with Disabilities Education Act (IDEA) system called First Steps systems, and shall be reported to the Missouri Commission for the Deaf. The state will provide appropriate intervention services that are family-centered, interdisciplinary, culturally competent, and built on informed choices for the family.
Statistics from studies published in the Journal of Pediatrics indicate that about 2.5 per thousand babies are born with hearing impairment. Attempts to estimate the incidence of all degrees of congenital hearing loss (milder, yet educationally significant hearing loss) have yielded numbers as high as 6 per 1000 infants. Since Missouri has approximately 75,000 births per year, this estimate indicates Missouri may have as many as 188 children born each year with permanent hearing loss and possibly as many as 263 other infants with significant hearing loss.
Among the reasons Missouri will implement universal newborn hearing screening are:
2. Organizational Experience and Capacity
The DOH has two divisions and one center which will work together to accomplish the goals and objectives of this grant. In addition., the Department of Elementary and Secondary Education (DESE), where First Steps systems are administered, will be an active partner because of the First Steps systems coordination. The Division of Maternal, Child and Family Health (MCFH), under the leadership of Glenda Miller, MPH, BSN, CS will have primary responsibility for grant activity. In addition to this grant, Ms. Miller oversees all maternal and child heath services for the department, including BSHCN and BGDP. Ms. Miller has had many years of experience in public health and in the private sector.
The BSHCN has a network of service coordinators located across the state who perform service coordination for the First Steps system and for children with special health care needs. These service coordinators assure families have a medical home and that appropriate services, including health and education, are being provided for the family. Dr. Richard Brown, Chief of the BSHCN, has been involved with the planning and organization of the newborn hearing screening system being developed. The State Public Health Laboratory (SPHL) is part of the Division of Administration. The SPHL will continue to do metabolic screening of newborns and data entry of newborn hearing screening when hospitals or ambulatory surgical centers decide not to perform data entry for the system. The specimen filter paper is being modified to include hearing screening and the laboratory personnel will enter this information into a data management system. In addition, CHIME will take the lead in establishing the web-based data management system. CHIME is well known across the nation in its expertise with data management, data relationships, and evaluation. CHIME staff will assist MCFH in training hospital staff, audiologists, and internal DOH staff to use the web-based data management system. CHIME will also assist MCFH in evaluating the program and its effectiveness.
The DOH is planning on contracting with Neometrics, Incorporated to provide technical skills to develop and implement the web-based data management system.
Neometrics is the largest US supplier of diagnostic reagents and computer systems for use by state health departments performing newborn screening. Neometrics is a specialist in both hardware and software, as well as diagnostics and has developed a wide range of public health laboratory applications which can be directly used to eliminate operating constraints while providing significant benefits in performance and cost savings. Extensive customer support, on-line context sensitive help screens and user documentation uniquely assist users in providing system friendly operations.
The data management system created to support this project will be integrated into the Missouri Health Strategic Architectures and Information Cooperative (MOHSAIC) system. MOHSAIC, started in 1993, is a web-based system developed by the DOH.
3. Administrative Structure
The Title V Director will administer the Universal Newborn Hearing Screening and Intervention Grant within the DOH. The BGDP will provide daily operational support to the project. The BSHCN will provide technical skills and assist with service coordination for children hearing loss.
The BGDP will continue to seek the assistance from the Newborn Hearing Screening Advisory committee to establish policy and procedures for the program. In addition DESE and DMH will provide assistance to families of children with hearing loss to access systems of care and provide technical expertise to the DOH.
The BGDP will work closely with CHIME to implement the web-based data management system that will be integrated with the MOHSAIC system. The MCFH (the Title V agency) has had a longstanding relationship with CHIME to assist in collecting data needed to report and analyze Maternal Child Health (MCH) health status indicators and MCH performance measures.
4. Available Resources
The MCFH is currently using state general revenue and Title V MCH Block Grant funding to support existing universal newborn hearing screening program activities. BGDP employees one full-time person to manage existing activities and to develop the system to be implemented in January 2002. The BGDP has contracted with SMSU to provide technical assistance and consultation services to birthing hospitals and birthing centers when selecting audiological equipment. Also the contractor will provide training to appropriate hospital staff on the use of the selected audiological equipment and program protocols.
DOH will use blended funding sources to purchase the Neometrics system. These funds will come from the MCH Block Grant, general revenue, and Medicaid.
In addition, the existing service coordination system in the BSHCN and the First Steps system will link children and families to the services they need.
Local public health. agencies will also play an integral role in assuring children needing follow-up evaluations and services get those services. This will be done through expansion of the existing maternal and child health contracts with these agencies.
MCFH will utilize the MOHSAIC system, a web-based data management reporting and surveillance system developed under the leadership of Garland Land, Director of CHIME.
To support MOHSAIC and the data warehouse, DOH has established a statewide network. All DOH sites and all local public health agencies in the state are connected through a routed network using high-speed frame relay lines.
5. Identification of the Target Population and Service Availability
Missouri's Universal Newborn Hearing Screening Program (UNHS) targets all infants born in Missouri. State law mandates that hospitals screen the hearing of-all infants beginning January 1, 2002. Those hospitals that voluntarily provide hearing screening to newborns prior to January 1, 2002 are to report the screening results to the DOH.
During the first year of the grant, the BGDP will target hospital's to effectively screen the hearing of newborns, implement a hospital based UNHS program and report data to the DOH using a web based data management system.
Missouri's estimated population in 1999 was 5,468,338. During that year, 75,366 infants were born in 80 birthing hospitals that are located through out the state. Accurate information about the number of infants with hearing loss is unknown.
During IFFY 1998, the BGDP contracted with SMSU to conduct a pilot project for the purpose of obtaining information to plan a statewide program and introducing state legislation that would mandate universal newborn hearing screening. A number of challenges and barriers were found during the pilot project and need to be addressed to effectively implement the legislation. Those include:
Although hospital administrators were in support of UNHS, some hospital staff responsible to conduct the hearing screening were not supportive of the program. Newborn hearing screening was added as an additional responsibility to current job responsibilities for some hospital staff: Other staff issues noted included: some staff did not screen all newborns, some reported problems with equipment, some staff required frequent training on use of equipment, and some staff were slow to send in monthly hearing screening reports.
Even though the legislation states that insurance companies will pay the cost of the newborn hearing screen, hospitals do not believe they will be reimbursed any additional money for the screen through the "newborn care package".
The Department of Insurance (DI) received a complaint from a health maintenance organization (HMO) about the number of false positive health screens that had become a significant expense to that HMO.
A percentage of parents whose infants fail the initial newborn hearing screen may not return for a repeat newborn hearing screen.
Hospitals need to have options for reporting hearing screening to the DOH, therefore training and ongoing technical assistance will be necessary to increase reporting thoroughness and accuracy.
To address the challenges and barriers noted above, the BGDP will:1. Implement a training program that addresses the attitudes of hospital staff, the appropriate techniques to conduct a hearing screen, and the procedures for reporting.
2. Continue to meet with the Newborn Hearing Screening Advisory Committee to resolve issues of third party reimbursement for initial and repeat hearing screening tests.
3. Educate families and support services about the need for children to have further evaluation if a child has been found to have a hearing loss in the initial screen.
6. Needs Assessment4. Work collaboratively with CHTME and others to establish the data management system needed to track children who need further testing and or follow-up intervention services.
In 1997, the DOH funded a universal newborn hearing screening needs assessment. The needs assessment was prompted by the national trend towards universal newborn hearing screening, local interest in the topic and the state's understanding that hearing loss is detectable at birth and that early intervention for hearing loss is effective. The Department of Communication Sciences and Disorders at SMSU conducted the assessment. Issues such as the prevalence of hearing loss in Missouri's children, the average age of identification of hearing loss in Missouri's children, the availability of intervention services for deaf and hard of hearing children and the current status of hearing screening programs were examined.
Several conclusions were made. It was determined that the prevalence of hearing loss in Missouri's children is not known. This is a result of the fact that there is no method of "counting" hearing impaired children or adults in the state. The state's Commission for the Deaf estimates that there are at least 467,370 Missourians with significant hearing loss. It is not known how many are children. DESE reported that in 1996, there were 1196 deaf or hard of hearing students between the ages of 5 and 21 enrolled in Missouri's public schools. It was estimated that another 200 children with hearing loss attend private schools. Data regarding children under the age of five is not collected.
An attempt was made to estimate the average age when children are identified with hearing loss. Four hospital based audiology clinics representing four different geographical areas of the state were asked to estimate the average age of identification of hearing loss in children in their clinic over the previous year. Based upon the reviews, the average age of identification of hearing loss in Missouri was estimated to be three years.
A telephone survey of Missouri's birthing hospitals was utilized to determine the number of hospitals operating universal newborn hearing screening programs, high-risk hearing screening programs or no hearing screening program. It was determined that of eighty-seven hospitals contacted, two hospitals were conducting universal newborn hearing screening programs. Thirteen hospitals reported using a newborn hearing high-risk factor checklist (paper screen) or hearing screen on those infants who are identified with one or more high-risk conditions. The remaining seventy-two hospitals reported no type of hearing screening program.
In order to determine if intervention services to deaf and hard of hearing children were available throughout the state, the state's First Steps system was examined. The First Steps system is administered by DESE and oversees the Early Childhood Special Education Program. First Steps system offers service coordination to all eligible birth to three year olds that have a delay. DESE contracts with both the DOH and DMH to provide service coordination throughout the state. The service coordinators are located throughout the state. Services are contracted with providers within the region. Service coordinators. from each region were contacted and questioned about the availability of intervention services for deaf and hard of hearing children. Approximately half of the service coordinators reported varying degrees of intervention options including the state sponsored Outreach Program. The Outreach Program is a home based early intervention program housed within the Missouri School for the Deaf.
In addition, the assessment concluded that current hearing screening technologies were effective for use with newborns and that the hearing screenings could be cost effective.
In summary, it was concluded that while a specific number of infants with hearing loss in the state was not available, it could be presumed that hearing loss is comparable to the national estimates. The average age, at which Missouri identifies infants with hearing loss, is three years old, is greater than the national average and is far from the goal of three months set by the Joint Committee on Infant Hearing. While early intervention services are available to infants with hearing loss, Missouri had little voluntary participation in universal newborn hearing screening programs. Several recommendations were made. Included was the recommendation that the state conduct a universal newborn hearing screening pilot project for the purposes of generating information that would be useful in planning a statewide program.
It is the intention of the state of Missouri that activities described in this proposal will satisfy the state's need to increase the number of newborns whose hearing is screened at birth, to lower the age at which hearing loss is detected in infants and children and to assure that infants and children with hearing loss receive timely and appropriate referral into intervention programs.
The DOH continued its efforts to move towards universal newborn hearing screening in 1998 as it funded the first pilot project conducted by SMSU. Six hospitals in Missouri were selected to receive funding to implement universal newborn hearing screening programs.
The process of implementing the six programs and the data collected from the first three months of operation provided much useful information. First, it was obvious that universal newborn hearing screening programs could be successful when operated in a variety of hospital environments, using a variety of equipment operated by a variety of personnel. Five hospitals had "acceptable" performance in the first three months. Each was able to screen 90% or more of births by the third month. Refer rates ranged from 2% to 21%.
The sixth hospital was considered unsuccessful. They were unable to screen more than 30% of the births during the first three months and the lowest monthly refer rate achieved was approximately 50%. While this hospital's performance was a disappointment, the performance was an effective demonstration of the importance of screener motivation. It is believed that the nursery staff that was charged with running the screening program was never consulted in its planning stages. The individual who provided the training to this facility indicated that it appeared that the nursing staff was unaware of the program until the day of training.
Effective training and motivation was identified as critical to the success of the program. It is believed that an audiologist is the most appropriate professional to provide guidance and training to hospitals. Some of the refer rates obtained by hospitals maybe considered slightly excessive (21%). For these reasons the DOH plans to offer a training program to hospitals in hopes of creating some consistency in procedures from hospital to hospital. It is believed that by accentuating training at the beginning, more desirable refer rates can be achieved sooner in the life of the program. Finally, it is apparent that much public education is needed in Missouri. The public, nurses, and physicians all need more information regarding hearing loss and its effects on children so that an understanding for the need for newborn hearing screening can be fostered. It is believed that DOH can utilize training sessions not only to train screeners, but to increase awareness of the nature of hearing loss in children. By offering training DOH can expand the information provided to hospital staff that will increase their understanding of the problem and increase their motivation to be a part of the solution. All hospital staff will be invited to components of the training, including physicians.
Hospital staff must play an important part in the planning of their own program. For that reason, DOH will offer consultation intended to help hospitals develop programs that will be successful in their environment. DOH has prepared materials designed to help hospitals in the planning stages. Telephone consultation with an audiologist is also available. Resources obtained from the National Center for Hearing Assessment and Management web site have been utilized in the development of these materials.
The pilot project demonstrated that three months of data was enough to illustrate the importance of a comprehensive data management system. Each hospital selected a method to keep daily records of screening. The hospitals were able to submit monthly data to the department, however, it was apparent that management of the data was of lower priority for the hospitals than the conduction of the screenings. The hospitals in this pilot took very little to no effort to track information after the baby left the hospital. While the initial screening information could be entered into a department database, the task of doing so was very intensive. The fact that the data came to the department in several different formats and the submission of only partial data from hospitals made tracking nearly impossible. The recommendation that resulted from this pilot project was that the department "study potential data tracking and management systems".
7. Collaboration & Coordination
MCFH will continue to collaborate with many partners to assure success of Missouri's UNHS program. MCFH will continue to work with CHIME to develop the data management system and provide statistical analysis.
The relationship between MCFH, BSHCN, DMH, and DESE will enable the UNHS program to assure children and families have service coordination services available to them to help navigate the health care delivery and early intervention systems.
MCFH will continue to rely on the Newborn Hearing Screening Advisory Committee to provide expertise regarding the audiology industry, deaf culture, standards of care, and family perspectives. This expertise will assist MCFH to develop policy and procedures needed to implement the program.
SMSU will continue to be a key partner to assist MCFH in developing procedures to implement the program. The university will also play an important role in the development of curriculum for training hospital staff to conduct hearing screening and recording and reporting data to MCFH.
The Missouri Department of Health is participating in a study sponsored by the National Institute on Deafness and Other Communication Disorders entitled "Epidemiology of Speech, Language & Hearing Impairments in Low Birth Weight Infants". The department has contracted with the University of Missouri-Columbia to conduct this study of children born around 1990 including surviving very low birth weight (<1500 grams) children, moderately low birth weight (1500-2499 grams) and normal birth weight (2500+ grams) children. The original study sample includes about 2500 children, with nearly equivalent numbers in each weight group. The study is meant to determine the prevalence of speech, language and hearing impairments for nine to ten year old children in each of the various birth weight groups.
Among the tests to be conducted are a hearing screening, test speech threshold, tympanometry in both ears, a screening test for auditory processing disorders, a photo articulation test, a clinical evaluation of language fundamentals and a verbal and non-verbal intelligence test. The tests are being conducted at seven speech and hearing clinics around the state including university sites, hospitals and some private institutions. Testing is expected to be completed by September 2001. Currently about 400 children have been tested.
8. Goals & ObjectivesGoal 1: To provide all newborns born in Missouri with hearing screening services before hospital discharge if possible, but before three months of age. Exceptions would be for newborns of families who submit written refusal to the hearing screening.
Objective 1: Increase from 8.2% (1999) to 99% of newborns who have their hearing screened before 3 months of age by 2002.
Objective 2: Develop rules to implement the program by September, 2001.
Activities
Objective 1: Increase from 80% of the data elements developed for tracking and case management system to 100% of the data elements required for the tracking and case management system by January 31, 2001.
Objective 2: Increase the number of children linked to a medical home 100% of children needing a medical home who are diagnosed as either deaf or hard of hearing will be assigned one by BSHCN service coordinators prior to the third contact between service coordinator and family.
Activities
Objective 1: To have a signed contract between the Department of Health and the Neometrics Company in place by January 31, 2001.
Objective 2: Develop the web based reporting system by May, 2001.
Objective 3: Pilot the system in at least four hospitals with assessment and correction of any problems by September, 2001.
Activities
Objective 1: To provide training programs to 100°/a of all birthing hospitals and birthing center personnel by December 21, 2001; after this date upon request and as needed.
Activities
In the 1997 needs assessment, only 20% of hospitals reported that they have an audiologist on staff. Many hospitals in Missouri are located in rural areas where audiological services are not available. The DOH will offer training to hospitals that request it. The training will be for individuals who conduct the screenings as well as other hospital personnel that have an interest in the training. It will consist of a one-day intensive workshop. An audiologist who is under contract with DOH will conduct the training.
Purpose of Training:
Accomplishment of the activities the state envisions for successful implementation of the newborn hearing screening program will require the following resources as reflected in the budget information, Form 424A.
For the first year the state is contributing $274,348 for newborn hearing screening. Federal funds requested are $199,993. This request and succeeding years' requests are necessary to build a successful universal newborn hearing screening program. State funds do not exist to meet the necessary costs for conducting this program. This federal request is comprised of:
a. Contractual costs of $125,000 to purchase a web-based reporting system that would benefit both the newborn hearing screening program and the state's metabolic screening program. Total cost of the system is approximately $375,000; this includes $50,000 for two servers needed. The DOH will be using the MCH Block Grant, genetics grant, Medicaid, and general revenue funds to support the remaining cost of acquisition. The long term tracking and service coordination/case management component of MOHSAIC is being funded from other sources.
b. A Health Program Representative (HPR) I for ten months at $22,364. This person will assist the newborn hearing program manager in tracking newborns and analyzing hospital reporting to determine screenings were conducted, appropriate referral rates, successful resolution of referrals for further audiological assessment, and receipt of early intervention services. It is crucial to this first year, and every year, that recognition of any problems are dealt with quickly to achieve the best solutions in as short a time as possible.
c. A .25 FTE Computer Information Specialist (CIS) III at $15,132. This person will provide training to hospital staff, audiologists, primary care physicians, and First Steps systems service coordinators to assure their understanding and knowledge of how to report electronically or, if so choosing, manually. This position will also be responsible for maintenance of the web reporting system.
d. Fringe benefits are based on 27% of personal service. The indirect cost rate is 37.5% of personal service plus fringe. The federally approved indirect cost rate is attached.
e. Travel expenses of $1500 are requested as prescribed by the application guidance for one person to attend a meeting in Washington, DC.
f. Mailing and printing costs of $5200 are requested for printing and distributing brochures describing the hearing screening which will be performed on their newborn. They will go to every family of a newborn.
g. System network expense of $2300 is requested to hook the Health Program Representative I to the DOH network. This is the charge assessed all users in the department.
For the second and succeeding years the equivalent of two service coordinators for the BSHCN are requested. These positions will help alleviate the already heavy workload of the bureau in responding to children with special health care needs and through the First Steps system delivery system. The two full time equivalent positions will be devoted to following up with families of newborns failing the hearing screening; assisting families whose infants are deaf or have significant hearing loss; and continuing to check on the family each year to assure appropriate medical and educational interventions are being received. These positions are contractual and amount to a total of $108,000. The positions of the HPR I and CIS III are maintained at an adjusted increase of 3%. Mailing and printing expenses of $2100 are requested for year two with no further amounts requested in years three and four. Travel expenses of $1500 are again requested for year two; $1240 is requested in year three; and no travel is requested for year four of the grant. The network access fee of $2300 for the HPR.I is expanded to the two service coordinator positions in years two through four resulting in a request of $6900 each of these years.
The Department will use grant funds only for activities described in this application. The required fiscal and accounting procedures will be followed.
10. Project Methodology
10.1 Newborn Hearing Screening Advisory Committee
To effectively implement the universal newborn hearing screening program by January 2002, state statutes required the formation of a Newborn Hearing Screening Advisory Committee. This committee is composed of:
10.2 Reporting. Case Management. and Surveillance System
Much thought and planning have gone into the reporting and case management system envisioned for Missouri. Development of the reporting and surveillance system for the newborn hearing as well as the metabolic screening programs has been done with technical staff from CHIME, MCFH, outside contractors, the Newborn Hearing Screening Advisory Committee, and staff from other departments.
The DOH plans to implement the newborn hearing program using the present metabolic screening information system. Hospitals are presently submitting a blood sample on a form to the state laboratory for metabolic screening. The metabolic form has been revised to include newborn hearing information. Hospitals and ambulatory surgical centers can submit only the form or enter the information into the web system. Regardless of source of data entry, the newborn hearing and metabolic screening information for all children will be captured in a common database. A web interface will be available for the audiologists to enter their evaluation information for children that indicated to have hearing loss based upon the hospital screening. The newborn hearing and metabolic data will be linked to the MOHSAIC data containing data from other services on a routine basis. The MOHSAIC system contains information obtained from birth records that have common identifiers for linkage including name, date of birth, hospital, sex, mother's Social Security number, and medical record number. Long term follow-up and case management will be monitored through the service coordination component of MOHSAIC. The state will contract to implement a data management and reporting system that will include a web based interface that hospitals and ambulatory surgical centers can use to enter both newborn hearing and metabolic screening data. Audiologists will also be able to use the system to report on the audiological assessment conducted for infants who need re-evaluation or additional audiological testing to confirm hearing loss.
MCFH will contract with Neometrics, Inc to assist in the development of the data management system. MCFH and Neometrics will work closely with CHIME to integrate the data management system with the MOHSAIC system.
The MOHSAIC system includes components for service coordination for children with special health care needs, First Steps system, Healthy Children and Youth (the EPSDT program in Missouri), HIV/AIDS service coordination, high risk prenatal appraisal, Tuberculosis and Lead service coordination and metabolic and newborn hearing screening service coordination. Key pieces of functionality are being developed in the service coordination sub-component including: 1) schedules for screenings and followup visits to ensure the client receives services and care when needed, alerts will aid the service coordinators by notifying them of events that are overdue or potential health risks that may be emerging for a client; 2) a template for a complete service plans to be created and monitored. The service plan will help the service coordinator monitor client outcomes as a result of the strategies and interventions recommended. The online availability of all care plans will allow the service coordinator to see what strategies other care providers may also be providing. Implementation of the service coordination subcomponent will occur by the spring of 2001. At a later stage, the DOH will expand the system to include web-based data entry for birth records that will integrate with the newborn metabolic screening and hearing. Newborn hearing and metabolic screening data will become part of MOHSAIC and the data warehouse so that all public health encounters with children will be captured in a person centered database.
The system will be available for tracking children with newborn hearing loss or late onset or progressive hearing loss. Presently there are 783 children with hearing problems enrolled in the Special Health Care Needs Program. These children along with other new children detected at birth with a hearing problem will be included in the MOHSAIC database, through the web-based system.
A data warehouse will be available through the MOHSAIC system to provide DOH staff with quick and easy access to department-wide data and pertinent external data to improve policymaking and program management. The data warehouse is built on the philosophy that all data in the DOH are a resource that should be available to all DOH programs within agreed upon confidentiality constraints. By making data available across bureaucratic lines, the programs will be able to integrate services easier. The data warehouse focuses on providing better access to each of the DOH surveillance and transaction files. The extended case management system (CMS) being developed will allow users to perform:
The extended CMS will have added capabilities to capture and store the hearing screening method, left ear and right ear results, referrals for further testing, and information on a referral made at the hospital. This information will be available to print on the mailer result report that is sent for each newborn that has had a metabolic screening performed. A limited mailer report suitable for sending to an audiologist will also be made available that would print the heating results without the other newborn screening test results. Referred test results and "not performed" results will be sent to CMS for followup. As data is transferred to CMS, a file is prepared for transmission to MOHSAIC.
The CMS will be modified to accept the new data being entered in the metabolic system, post action based on the hearing results and allow long-term follow-up of hearing disorders. On-line search test result screens will be modified to include the display of hearing results. Security features will be enhanced to allow the separation or combination of hearing screening information and newborn screening laboratory information.
Hearing confirmation tests referral results or other extended test results will be incorporated into the CMS referral data table. This will allow the CMS user the ability to record all testing and referrals beyond the initial screening test as part of the patient history. Presumptive and final diagnosis for hearing disorders as well as case disposition reasons specific to hearing screening will be added to the existing newborn screening codes.
10.3 Education of Providers
All hospitals, ambulatory surgical centers, audiologists, and primary care physicians will be provided training on the state's newborn hearing screening program in the fall of 2001. The state has contracted with an audiologist to provide training about hearing screening. Regional training sessions on reporting by the web or manually for hospitals and audiologists will be conducted at or near the same time as hearing screening training is being conducted.
A well-informed and knowledgeable provider corps is essential to the state accurately access the hearing ability of newborns. The surveillance system will be followed closely to detect abnormally high referral rates. Those hospitals with high rates will be targeted for further evaluation and training to refine their screening procedures. where necessary.
10.4 Educational Literature
Pamphlets will be produced for families describing newborn hearing screening procedures, what to do if the baby needs to be referred for additional evaluation, and information on growth and development at various stages of the newborn's first year of life. In addition, a parent resource package will be developed and given to parents by the audiologist when it a child is confirmed as deaf or has substantial hearing loss. The parent resource package will provide information on hearing loss, causes, current technologies for enhancement of hearing, assistive devices, parent education, information on the deaf culture, resources for obtaining help for their child with hearing loss, discussion groups and parent support groups for parents, and important questions to consider when seeking help for their newly diagnosed child with hearing loss.
10.5 Early Intervention Services
Audiologists are required to make referrals and will be trained on making referrals to the First Steps system. All hospitals and audiologists across the state will be provided a resource about the First Steps system including contact persons, phone numbers, and addresses. Hospitals will be informed about the First Steps system referral process so they make appropriate referrals for the family. The data management and reporting system will readily identify those infants needing further audiological assessment or referral to the First Steps system for treatment interventions. Service coordinators will assure the infant is enrolled for intervention services before six months of age. Service coordinators will provide education and information to families about the importance of early identification of hearing loss and intervention to the child's development.
As part of interagency collaboration, the BSHCN service coordinator shall be a part of the First Steps system care team, assist in the development of the Individualized Family Service Plan (IFSP) and assist the family in locating local resources for the early intervention services recommended by the care team. If the family chooses not to be part of the First Steps system, the BSHCN service coordinator can continue as the primary service coordinator and obtain needed early intervention services through other sources.
Close follow-up shall continue until the child is transitioned into an appropriate educational setting at age three. The child's IFSP shall be reviewed every six months and a new plan shall be developed on an annual basis. The plan is written in cooperation with the family and includes the child's unique developmental needs and states outcomes for the child and the family. Transition includes: team discussions and parent training regarding future placements, procedures to prepare the child for changes in service delivery including steps to help the child adjust and function in a new setting. and with written parental consent information about the child shall be provided to the local education agency.
The data management system will also detect infants who have not been screened and letters will be generated to the family, hospital, and primary care physician encouraging a hearing screening as soon as possible. Continued monitoring of these infants will be done through the system to assure a hearing screening was performed by three months of age.
11. Evaluation Plan
Evaluation of the UNHS project is critical to assure the desired outcomes are accomplished. The first year of the project will focus on developing a web-based data management system and training hospitals to initiate newborn hearing screenings and entering the results into the system. The data management system will provide much of the data necessary for program staff and stakeholders to evaluate the success of the UNHS project.
11.1 Analysis of Data from Birthing .Facilities
To assure infants are being screened for hearing, the data entry and case management system will be reviewed monthly to determine:
Aggregate data for the state will also be kept. Assessment of how facilities compare with each other and with the statewide average will be determined.
High referral rates will prompt follow-up services provided by MCFH with the hospital to determine why the high rates are occurring. Additional training or an assessment of the equipment used will be available for any birthing facility from MCFH.
11.2 Analysis of Data from Audiological Assessment
To assure infants are receiving appropriate audiological assessment after identifying additional screening is needed, the data entry and case management system will be reviewed monthly to determine:
Those infants not receiving audiological assessment as indicated on the reporting system will be sent letters urging the family to take the baby for an assessment. Phone calls will also be made. Personal contact by service coordinators will be sought when the first two attempts described above have failed.
11.3 Confirmation of Early Intervention Services
Quality indicators assuring children obtained appropriate early intervention services include: