South Dakota CDC EHDI GRANT (2001)

GRANT ABSTRACT

Project Title: Early Hearing Detection and Intervention (EHDI) Program
Level of Activities: Level I Project Number: #01048
Project Director: Kayla Tinker Phone: (605) 773-3737
Organization Name: South Dakota Department of Health
Address: Division of Health and Medical Services
615 East 4h Street
Pierre, South Dakota 57501-1700
Contact Person: Kayla Tinker Phone: (605) 773-3737
Fax: (605) 773-5942 E-mail Address: kayla.tiiker@state.sd.us

The South Dakota Department of Health (DOH) is requesting funds for a Level I Early Hearing Detection and Intervention (EHDI) cooperative agreement to establish and implement a surveillance and data tracking system which links the data from the three components of the EHDI system - screening, audiologic diagnosis and early intervention. The intent of the South Dakota EHDI program is to link the state's electronic birth certificate (EBC) system to the newborn hearing screening program. This will help assure minimal loss to follow-up by monitoring the status and progress of infants through the system in an effort to further achieve the state's goal of screening by three months of age and early intervention by six months of age.

While much progress has been made in South Dakota to increase hearing screening for newborns and establish a system to link families with needed intervention services, there is not an existing means to collect standardized data and track infants born in the state to determine if screening and early intervention are occurring in a timely manner. The EHDI grant will allow the DOH to convert the limited aggregate (paper and pencil) data collection system to a comprehensive tracking and evaluation system. The first stage of the conversion will be to link the newborn hearing-screening program to the state's EBC system. This link will provide information to the EHDI program regarding whether or not a screening was done prior to discharge and if the infant was referred for further evaluation.

The next step will involve the DOH either purchasing or developing a system that would allow hospitals to download information using a unique identifier into the DOH EHDI data system about individual infants screened and/or receiving follow-up evaluations and interface this with the state's EBC system.

GOALS AND OBJECTIVES:

Long Term Goal: By 2005, create a centralized electronic data system which links the data from the three basic components of the early hearing detection and intervention program

Short Term Goal: By August 1, 2002 and ongoing, establish and implement an EHDI tracking and surveillance system for hospitals, Birth to 3, physicians, and audiologists in order to identify infants who did not have or did not pass the hearing screening at birth so infants receive appropriate follow-up and diagnostic evaluations before three months of age and are enrolled in needed early intervention programs by six months of age.

Objective 1. By September 1, 2001, hire an individual to coordinate the EHDI program.

Objective 2. By October 1, 2001 and ongoing, establish a link between the EHDI database and the state's electronic birth certificate system.

Objective 3. By October 1, 2001 and ongoing, develop strategy and timelines to collect standardized EHDI data from hospitals, Birth to 3, audiologists, and providers to assure that there is minimal loss to follow-up.

Objective 4. By January 1, 2002 and ongoing, develop an analytic plan for the South Dakota EHDI system that will obtain the necessary outcome data.

Objective 5. By January 1, 2002 and ongoing, document concerns from parents and professionals regarding the South Dakota EHDI process.

Objective 6. By August 1, 2002 and ongoing, collect data on infants/children with late onset or progressive hearing loss.

Objective 7. By November 1, 2002, prepare and publish a report describing the South Dakota EHDI system, including definitions, methodology, collaborative relationships, data collection, findings, and recommendations.

ORGANIZATIONAL STRUCTURE:

The EHDI program will be located within the DOH Division of Health and Medical Services Office of Family Health (OFH). OFH is responsible for the administration of the MCH block grant and emphasizes development of health care service systems for families, children/ adolescents, mothers, infants, and children with special health care needs (CSHCN). OFH also provides program direction and technical assistance for primary/preventive care for women and infants including risk assessment and case management of pregnant women, genetic counseling, perinatal education, and prenatal and post-partum home visits. Both the Newborn Hearing Screening Program and the Newborn Metabolic Screening Program are located in OFH.

GRANT NARRATIVE

A. Understanding of the Problem and Current Status

The South Dakota Department of Health (DOH) is requesting funds for a Level I Early Hearing Detection and Intervention (EHDI) cooperative agreement to establish and implement a surveillance and data tracking system which links the data from the three components of the EHDI system - screening, audiologic diagnosis and early intervention. The intent of the South Dakota EHDI program is to link the state's electronic birth certificate (EBC) system to the newborn hearing screening program. This will help assure minimal loss to follow-up by monitoring the status and progress of infants through the system in an effort to further achieve the state's goal of screening by three months of age and early intervention by six months of age.

1. Current Status of Newborn Hearing Activities

During his 2000 State of the State Address to the State Legislature, Governor William Janklow introduced his Bright Start initiative to ensure the systems are in place to help all babies born in the state get a good start in life through the provision and promotion of primary and preventive health care services. An important part of Bright Start is to assure all infants born in South Dakota receive hearing screening and early intervention.

In March 2000, the DOH was awarded a Universal Newborn Hearing Screening grant from the Maternal and Child Health Bureau (MCHB) to support planning, development, implementation, and refinement of an early hearing detection and intervention program. Although there is not a newborn hearing screening mandate in place in South Dakota, many of the 38 hospitals performing deliveries in the state were voluntarily providing hearing screening. According to surveys conducted by the DOH, it is estimated that approximately 42% of newborns were screened in 1996, 47% in 1997, 51 % in 1998, 62% grant, significant progress was made to make hearing screening more accessible for South Dakota newborns with all hospitals delivering over 40 babies a year (24 facilities) now having access to newborn hearing screening equipment (see Appendix A).

A Newborn Hearing Screening Advisory Committee was formed to provide guidance to the DOH on the development of a system for statewide newborn hearing screening and early intervention. Representation includes an audiologist, speech pathologist, pediatrician, family physician, newborn nursery nurse, parents of deaf and hard of hearing children, SD Parent Connection, SD School for the Deaf, University Affiliated Programs (UAP), Indian Health Service (IHS), hospital administrator, SD Association of Healthcare Organizations (SDAHO), Part C Birth to 3, Medicaid, and DHS Office of Rehabilitative Services (see Appendix B). The DOH contracts with an audiologist and a neonatologist as part of the Newborn Hearing Screening Grant who also participate in committee meetings. Since its first meeting in October 2000, the committee has focused on the areas of development of screening protocols, networking arrangements, referral systems, data collection, and parent/provider education. It is anticipated that this committee will also provide guidance on the EHDI project.

The DOH purchased EchoPort Plus infant hearing screening equipment for nine hospitals in the state that did not have access to equipment but had over 40 births a year. Initial training was provided in December 2000 by an audiologist with the distributor of the equipment, Medical Technologies, Inc. Follow-up training was provided in April/ May of 2001 by a representative from the National Center for Hearing Assessment and Management (NCHAM) and two audiologists under contract with the Newborn Hearing skills, provide information to assist staff answer questions from families, and lay the foundation for quality assurance/improvement programs at each facility.

With the assistance of the Advisory Committee and audiology and medical consultants, the DOH developed recommended guidelines for newborn hearing screening policies and procedures (see Appendix C) which were provided to all birthing hospitals for use in developing specific protocols for individual facilities. The guidelines are based on recommendations of NCHAM, the Joint Commission of Infant Hearing: Year 2000 Position Statement, and policies used in other states. The guidelines cover such issues as: (a) personnel and training; (b) tracking and reporting requirements; (c) hearing screening equipment; (d) hearing screening environment; (e) referral procedure for infants in need of further evaluation; (f) missed hearing screens; (g) hearing screening for non-resident births, transfers, adoptions, and foster care; (h) quality improvement; (i) parental notification; (j) risk indicators; and (k) newborn hearing screening resources. The DOH also recommended that facilities include informed consent for newborn hearing screening as part of their usual informed consent procedure upon admission.

In early 2001, the DOH in cooperation with the SD Audiology Association, conducted a survey of audiologists in the state to develop a comprehensive list of audiologists who are able and interested in providing audiology evaluations for newborns (3 months of age or younger) (see Appendix D for a copy of the survey). Surveys were sent to the 39 audiologists in the state and the DOH received 21 responses. Of those, one audiologist reported no contact with children less than 3 years of age. Of the remaining 20 responses, only a small portion indicated an interest and/or ability to provide further diagnostic/evaluation services for infants (see Table 1).

Table 1. Audiologists Performing Specified Evaluation/Diagnostic Procedures for Infants Three Months of Age or Younger (N=20)

Sixteen audiologists reported working with infants 3 months of age or younger in the past year. The majority (N=11) reported that their caseload consisting of patients 3 months of age or younger was less than five percent. The majority of the audiologists (N=14) responding have fit 10-20 infants six months of age or younger with hearing aids in the past year and all respondents provided hearing aids on a trial basis. Fourteen audiologists have loaner hearing aids available and can provide them in 1-2 weeks or less. Sixteen audiologists were familiar with the Birth to 3 Program. Six audiologists reported experience in the sedation of infants for the purpose of performing a hearing screening. Of these, two reported experience of one year with less than 10 infants, one reported one year of experience with 10-20 infants, and one reported 18 years of experience with more than 50 infants. Of the remaining two audiologists, one had only observed sedation and the other had performed sedation in the past but was not doing so at this time.

The DOH has been working closely with the state's Birth to 3 Program to establish links for the newborn hearing screening program. The local Birth to 3 service coordinators are critical to the process of successfully linking babies identified with a potential hearing impairment with the services they need. In April 2001, local Birth to 3 coordinators were sent a letter asking them to contact the hearing screening coordinator at each of the hospitals in their area to establish a direct relationship with screening staff to discuss the assistance Birth to 3 can provide to families, hospital staff and medical providers and to reinforce the benefit of referring families to Birth to 3 for needed assistance. A three-part tracking form was developed by the DOH (see Appendix E) to be used by hospitals providing newborn hearing screening to link families of infants with "refer" results to Birth to 3 coordinators. The original (white) copy is sent to the infant's primary care provider, the second (yellow) copy is sent to the local Birth to 3 coordinator and the third (pink) copy is retained for the infant's hospital record. Within one month of receiving notification, the local Birth to 3 coordinator will check to see if the infant has received further medical evaluation. If not, they will contact the family to determine if they need encouragement and assistance to see a primary care provider or other physician. If no medical reason for hearing-impairment can be determined (i.e., fluid or debris in the ear) and the family wishes to enter the Birth to 3 program, staff will begin the referral process including assisting with arranging developmental evaluations (including an audiologic evaluation). If the family does not wish to enter the Birth to 3 program, staff will assist them in making their own arrangement for an audiologic evaluation. Birth to 3 staff will explain that the evaluation should ideally occur by three months of age so that any needed interventions can occur by six months of age. If hearing loss is confirmed by an audiology evaluation, Birth to 3 staff will assist the family as needed to have the necessary intervention in place within 45 days of receipt of the referral. The Birth to 3 coordinators will also provide periodic reports to the DOH on:

• # of tracking forms received;
• # of referrals still in progress or pending further action, by hospital;
• # of referrals resolved with follow-up by three months of age;
• # of referrals resolved with follow-up after three months of age;
• # of referrals resolved with follow-up evaluation and no impairment found;
• # of referrals resolved with follow-up evaluation done, impairment found and treatment and intervention initiated by six months of age;
• # of referrals resolved with follow-up evaluation done, impairment found and treatment and intervention initiated after six months of age;
• # of parents who refused further evaluation; and
• # of unsuccessful attempts to contact family after repeated attempts.

The DOH has established a paper and pencil data collection system for statewide newborn hearing screening services. Data will be used to determine the effectiveness of screening and early intervention efforts as well as provide statewide reports and reports to MCHB as part of federal grant requirements. Since South Dakota does not have a mandate for newborn hearing screening in place, reporting is voluntary. In an effort to increase voluntary participation in the data collection effort, the DOH has worked to develop a system that will be the least burdensome for facilities. To that end, the DOH is collecting only aggregate data at this time. The DOH has developed a data collection form that is currently being field tested (see Appendix F0. Hospitals are being asked to use the form and provide any suggestions as to how to improve it or make it more user friendly. Data is requested by the 15`" of each month for the preceding month's activities. Currently 16 of the 24 hospitals with screening equipment are submitting information to the DOH. The DOH has explored the option of purchasing a software package (i.e., OZSims or Hi-Track) to help with data collection and management efforts. However, most hospitals indicated that the cost of purchasing software for their facility was prohibitive. This is particularly true for those facilities with fewer than 100 births per year.

A variety of parent education materials have been developed by the DOH for the newborn hearing screening program (see Appendix G).

Bright Start Welcome Box Insert -Parents of every infant born in South Dakota receive a Bright Start Welcome Box. The intent of the box is to help parents get their baby off to a good start in life. The box includes a Good Night Moon book, Food for Thought video, Mozart Baby CD, Ages and Stages Book, a first aid book, a library card, and informational brochures. The DOH has worked with the Bright Start program to include an information insert regarding newborn hearing screening in the Welcome Box. The insert talks about the importance of a hearing screen for infants and urges parents to call their health care provider if they aren't sure whether their baby had a hearing screen before leaving the hospital.

Prenatal Visit Card - This card has been distributed to family physicians and obstetricians in the state for use during prenatal care visits. Again, this card talks about the importance of early identification of hearing loss and reminds parents to talk to their health care provider about the hearing screening either prior to admission or while in the hospital.

Hospital Screening Information - Cards were developed to be used by hospitals following the hearing screening and prior to the newborn's discharge from the hospital. One card talks about passing the hearing test and tells parents that the hospital was able to obtain appropriate responses for both of the newborn's ears and that the results will be shared with the baby's doctor. It also reminds parents to contact their health care provider if they have concerns about or suspect a change in their child's hearing. The second card tells parents that their baby has had their first hearing test and that the hospital was not able to obtain the appropriate responses for one or both of the infant's ears. The card goes on to tell parents that their baby should be further evaluated as soon as possible.

The DOH is also working with its medical consultant to encourage the active participation of health care providers in early hearing screening and interventions efforts. Information was distributed in early June 2001 to all physicians, midlevels and IHS facilities detailing the materials and resources that are available to providers to help ensure that all babies are appropriately screened and, if indicated, referred for necessary follow-up evaluation and intervention.

In the second year of the Newborn Hearing Screening grant, the DOH is providing follow-up training and technical assistance to hospitals and health care providers to ensure successful collaboration and early intervention. The DOH is also continuing its work to assure that hearing screening is available to all babies born in facilities with fewer than 40 births where screening equipment is not available. The third and fourth

years of the grant will focus on refining the infrastructure with the ultimate goal of full implementation of a newborn hearing screening program by the end of the four-year project period with at least 90% of newborns receiving a hearing screen.

2. Need for EHDI Funds

While significant progress has been made in South Dakota to increase hearing screening for newborns and establish a system to link families with needed intervention services, the work has only begun. Hospital screenings and referrals are just the first steps. The next step is to establish a system to ensure the necessary follow-up evaluation and interventions are provided to infants referred for further hearing evaluation and testing.

The EHDI grant will allow the DOH to convert the limited aggregate (paper and pencil) data collection system to a comprehensive tracking and evaluation system. The first stage of the conversion will be to link the newborn hearing screening program to the state's EBC system. This link will provide information to the EHDI program regarding whether or not a screening was done prior to discharge and if the infant was referred for further evaluation.

The next stage will involve the DOH either purchasing or developing a system that would allow hospitals to download information about individual infants screened using a unique identifier into the DOH EHDI data system and interface this with the state's EBC system. This link will allow for:

• identification of "missed" infants;
• identification of unexpected clusters of infants with hearing loss in particular regions at particular times;
• identification of racial disparities of infants screened and infants receiving intervention;
• identification of infants/children with late onset or progressive hearing loss;
• evaluation of referral rates by hospitals and screener;
• increased participation in data collection efforts by eliminating current paper and pencil collection system;
• earlier entrance into early intervention programs; and
• identification of infants born outside of hospitals with screening equipment (i.e., home births, births from hospitals without equipment, infants transferred to another hospitals) to determine if infants are being screened through outreach programs.

The EHDI system will also be used to allow for data collection from audiologists in the state to track assessment and intervention activities for infants identified with hearing impairment. Providing an easy access system for audiologists will allow for a data collection mechanism after hospital discharge. This information will be linked to the EBC for comparison and matching so that EHDI staff can quickly determine which infants are in need of focused follow-up efforts. Ultimately, this will allow the DOH to document the incidence of hearing loss in children in the state as well as if the infant/child was enrolled in early intervention services.

3. Challenges and Barriers

There are several challenges to developing and implementing an EHDI tracking and surveillance system in South Dakota. As was mentioned earlier, South Dakota does not mandate newborn hearing screening so participation by hospitals and health care providers (e.e., physicians, midlevels, audiologists, etc.) in any screening and intervention activities undertaken by the state is voluntary.

The current data collection process is also an issue. Since submission of data regarding newborn hearing screening activities by hospitals is voluntary, the DOH has developed a data collection system that will be easy for hospitals to complete in an effort to encourage participation in the data collection efforts. However, this limited collection system does not let the DOH know if babies are missed and if appropriate follow-up and intervention is provided for those infants who are identified with a potential hearing loss. The current data collection system is also slower than a direct link with the EBC system would be and may cause delays in meeting the three month and six month goals for screening and intervention. The EHDI program will provide an immediate link to the state's EBC system and the DOH will, at a minimum, be able to obtain data regarding whether or not a hearing screen was performed prior to discharge as well as information about sex, race, county of birth, etc. In addition, the system would be designed to document follow-up and treatment of infants with hearing loss so that program effectiveness can be evaluated.

The rural nature of the state makes the provision of services more challenging due to the lack of availability of providers and the distance people must travel to see providers -particularly specialists. South Dakota is one of the least densely populated states in the nation with 754,844 people living within its 75,955 square miles for an average population density of 9.9 people per square mile (2000 Census). Half (33) of the state's 66 counties are classified as frontier (population density of less than six persons per square mile) while 30 are considered rural (population density of over six persons per square but no population centers of 50,000 or more.) Three counties are classified as urban (have a population center of 50,000 or more) (see Appendix H).

Access to health professionals who provide primary care is limited in the state. According to a survey conducted by the DOH Office of Rural Health, there were 1,246 active physicians licensed in South Dakota in 2000. Of those, 56.7 percent practiced in an urban location (either Minnehaha, Lincoln or Pennington county), 30.3 percent practiced in a large rural community (the next 11 most populous counties), and 12.9 percent practiced in a small rural community (all other counties). Of those, 576 are considered primary care physicians (i.e., family practice - 281, internal medicine -155, pediatrics - 57, OB/GYN - 55, or general practice - 28). There are also 305.15 FTE primary care physician assistants, nurse practitioners and nurse midwives located in the state.

Access to audiologists is also limited with only 39 audiologists licensed in South Dakota in 2000. As was shown earlier in Table 1, only a small portion of these audiologists indicated an interest and/or ability to provide diagnostic/evaluation services for infants. In addition, those few audiologists who do have an interest and/or ability to provide diagnostic/evaluation services for infants are located in the extreme southeastern corner (two each in Sioux Falls and Vermillion), the extreme western part of the state (one in Rapid City), and central South Dakota (one in Pierre) (see Appendix I). This means that families have to travel great distances to access needed diagnostic, evaluation and intervention services for their infant if a hearing impairment is identified.

IHS delivers services to the Native American population on the state's nine reservations (see Appendix J for a map showing location of reservations). Native Americans represent the largest minority population in South Dakota at 8.2% of the state's population. There are IHS hospitals in Eagle Butte, Pine Ridge, Rapid City, Rosebud, and Sisseton. Currently, only Pine Ridge and Rosebud are performing deliveries. In October of 2000, the DOH offered to purchase newborn hearing screening equipment for Pine Ridge and Rosebud. After much consideration, the facilities decided to purchase their own screening equipment. In addition, Eagle Butte has also recently purchased newborn hearing screening equipment. However, it is the understanding of the DOH that none of the facilities are currently utilizing the equipment. This leaves a major gap in newborn hearing screening services and data collection for the Native American population. At a minimum, the link to the state's EBC system will allow the state to identify if a hearing screen was performed on newborns prior to discharge from an IHS facility. The Newborn Hearing Screening program continues to work to encourage hearing screening of infants born at these IHS facilities.

4. EHDI Integration with Other Newborn Screening Program Activities

The EHDI program will work closely with the state's Newborn Metabolic Screening Program to assure EHDI surveillance and tracking activities are integrated with newborn metabolic screening activities. Both these screening programs will be linked to the EBC system using a unique 12-digit identifier, which is currently being used only on lab forms in the metabolic program. With the use of EHDI funding, the DOH will add a field for the unique identifier to the EBC forms, data base and hearing screening result forms. This number will then be used by hospitals and the DOH to link information pertaining to screening performed to the infant's EBC. This number, along with limited demographics, will be used to accurately match screening results with infants born in the state. Infants without screening results can be tracked and appropriate follow-up can be conducted to see that needed screening and early intervention is provided.

The Newborn Metabolic and Hearing Screening programs as well as the Children Special Health Services Program are within the DOH Office of Family Health and staff of these programs report to the same supervisor. This organizational structure facilitates collaboration and linkage of newborn screening and early intervention programs in South Dakota. In addition, the Birth to 3 program is collaborating closely with the DOH Newborn Hearing Screening Program to ensure screening and early intervention is taking place for infants born in the state. A tracking form and reporting system, jointly developed and used between these programs allows for tracking and communication of intervention status for infants identified with potential hearing loss.

B. Goals and Objectives

Long Term Goal:

By 2005, create a centralized electronic data system which links the data from the three basic components of the early hearing detection and intervention program - screening, audiologic diagnosis and early intervention - with the electronic birth certificate system.

Short Term Goal:

By August 1, 2002 and ongoing, establish and implement an EHDI tracking and surveillance system for hospitals, Birth to 3, physicians, and audiologists in order to identify infants who did not have or did not pass the hearing screening at birth so infants receive appropriate follow-up and diagnostic evaluations before three months of age and are enrolled in needed early intervention programs by six months of age.

Objective 1. By September 1, 2001, hire an individual to coordinate the EHDI program.

Objective 2. By October 1, 2001 and ongoing, establish a link between the EHDI data base and the state's electronic birth certificate system.

Objective 3. By October 1, 2001 and ongoing, develop strategy and timelines to collect standardized EHDI data from hospitals, Birth to 3, audiologists, and providers to assure that there is minimal loss to follow-up.

Objective 4. By January 1, 2002 and ongoing, develop an analytic plan for the South Dakota EHDI system that will obtain the necessary outcome data.

Objective 5. By January 1, 2002 and ongoing, document concerns from parents and professionals regarding the South Dakota EHDI process.

Objective 6. By August 1, 2002 and ongoing, collect data on infants/children with late onset or progressive hearing loss.

Objective 7. By November 1, 2002, prepare and publish a report describing the South Dakota EHDI system, including definitions, methodology, collaborative relationships, data collection, findings, and recommendations.

D. Collaborative Efforts

South Dakota's public health system includes the DOH, other state agencies, community health centers, IHS, tribal health representatives, and other public/private organizations. Through its work on maternal and child health issues and the Newborn Hearing Screening program, the DOH has developed numerous collaborative relationships with these entities in an effort to meet the health care needs of South Dakotans.

The CSHS director serves on the State Interagency Coordinating Council for Birth to 3. The purpose of the council is to ensure collaboration in the maintenance and implementation of a statewide, comprehensive, coordinated, multi-disciplinary, and interagency service delivery system for children eligible under Part C of the Individuals with Disabilities Education Act (IDEA). The system is designed to ensure the availability and accessibility of early intervention services for all eligible infants and toddlers and their families. The DOH participates in an interagency agreement with the Departments of Education and Cultural Affairs, Human Services and Social Services that specifies the roles and responsibilities of these agencies related to the specific services required and provides guidance for their implementation (see Appendix K). Under this agreement, the DOH provides the following services:

• Child health conferences (i.e., nursing physical assessments, developmental screening, age-appropriate vision/hearing screening, and patient education);
• Care coordination for CSHCN;
• Age-appropriate immunizations;
• Newborn assessments (i.e., nursing physical assessments, parent education);
• School health services as designated in contractual agreements with individual schools;
• Medical evaluations, diagnosis and treatment by pediatric specialty physicians for CSHCN;
• Nutrition education and counseling for CSHCN; and
• Supplemental food program for women, infants and children (WIC).

The DOH also collaborates informally and through a formal contract with the South Dakota Parent Connection. Parent Connection serves as the Parent Training and Information Center for the state and as such provides parent workshops and trainings throughout the state as well as training for CSHS staff. The Director of SD Parent Connection also serves on the Newborn Hearing Advisory Committee.

The DOH also has a long-standing collaborative relationship with the South Dakota University Affiliated Program (UAP). As a Leadership Education in Neurodevelopmental and Related Disorder (LEND) grantee, the UAP is serving a vital role as the only training program in the state that provides specialty educational opportunities to graduate students in the fields of medicine, nursing, social work, nutrition, speech pathology, audiology, pediatric dentistry, psychology, occupational therapy, physical therapy, and health administration. LEND graduates will form the core workforce of professionals in the state who are skilled and knowledgeable leaders in all aspects of care regarding neurodevelopmental disabilities in children. Further, LEND graduates are specially trained to meet the unique needs of residents of South Dakota. The Associate Director of the UAP serves on the Newborn Hearing Advisory Committee and both the Title V MCH director and CSHS director serve on the LEND advisory committee. In addition to LEND, MCH an UAP coordinate on a number of other training and interagency projects. A copy of the Interagency Agreement with LEND is provided in Appendix L.

As was mentioned earlier, the DOH has worked closely with the Newborn Hearing Advisory Committee, Birth to 3, audiologists, and hospitals to implement the Universal Newborn Hearing Screening Program. The DOH expects to build upon these collaborative efforts in the development and implementation of the EHDI program.

The DOH has worked closely with the hospitals, physicians and audiologists in the state to implement the Newborn Hearing Screening Program. All of these groups are represented on the Newborn Hearing Advisory Committee and the DOH has utilized their expertise in the development of training activities, protocols/policy guidelines, referral systems, reporting, and education materials.

Letters of support from various partners for the South Dakota EHDI Program Cooperative Agreement application are included in Appendix M.

Process and outcome evaluation activities are established as ongoing priorities throughout the duration of the project. In order to ensure that the goals and objectives of the project are achieved and to guide ongoing activities, evaluation activities have been specified by actual task in the methodology section (see page 16). Process evaluation findings will be used as necessary to alter interactions with hospitals, audiologists and Birth to 3 staff.

The EHDI program will be located within the DOH Division of Health and Medical Services Office of Family Health (see below). The Project Coordinator will have the following staff available to assist with project implementation:

The EHDI Project Coordinator will be a new position within the Office of Family Health. Curriculum vitas for selected staff and a position description for the EHDI coordinator are provided in Appendix N.

G. Organizational Structure

The South Dakota Department of Health is an executive-level department with the Secretary of Health appointed by, and reporting to, the Governor. The DOH is organized into three divisions (see organizational charts in Appendix O).

The Division of Health and Medical Services (HMS) emphasizes development of health care service systems for families, children/adolescents, mothers, infants, and children with special health care needs (CSHCN). This Division is responsible for the administration of the Maternal and Child Health (MCH) block grant in South Dakota. Oversight of the MCH block grant is provided through the Office of Family Health (OFH) located in HMS. OFH directs care coordination services for children with chronic illness, disabling conditions and other special health care needs through the state's Children's Special Health Services (CSHS) program. The CSHS program also coordinates diagnostic and consultive outreach pediatric specialty clinics and provides financial assistance for specified conditions and procedures on a cost share basis. In addition, OFH provides program direction and technical assistance for primary and preventive care for women and infants including risk assessment and case management of pregnant women, genetic counseling, perinatal education, and prenatal and post-partum home visits. Both the Newborn Hearing Screening Program and the Newborn Metabolic Screening Program are located in OFH. The EHDI program will also be located in this Office.

The Division of Administration provides centralized support to DOH programs including financial management, computer systems, communications, health planning, legislative coordination, grant writing, and research. The Office of Data Statistics and Vital Records located in this division maintains the vital records system for the state as well as provides technical assistance for the development, implementation and evaluation of data collection activities.

The Division of Health Systems Development and Regulation administers regulatory programs related to health protection, health care facilities, rural health, and emergency medical services.

As was mentioned earlier, the EHDI Program will be co-located with the Newborn Metabolic and Hearing Screening programs as well as the Children Special Health Services Program within the Office of Family Health and staff of these programs report to the same supervisor. This organizational structure will facilitate collaboration and linkage of newborn screening and early intervention programs in South Dakota.