Indiana
PROJECT ABSTRACT
Project Title: Refining the Statewide Universal Newborn Hearing Screening & Intervention System in Indiana
Project Number: CFDA # 93.251
Principle Investigators: Judith Ganser, M.D., M.P.H., MCH Director
Weil in Long, M.A., M.P.A., Newborn Screening Program Director, MCH
Project Director: Weilin Long, M.A., M.P.A, Newborn Screening Program Director
Organization Name: NBS Program, Maternal & Child Health Services, Indiana State Department of Health
Address: 2 North Meridian Street, Section 7C, Indianapolis, IN 46204
Contact Person: Weilin Long, M.A., M.P.A Phone: (317)233-1231
Fax: (317)233-1300 E-mail: wlong@isdh.state.in.us
Project Period: 4-years From: 3/31/01 to 3/30/05
Organizational Setting
The project will be administered by the Newborn Screening Program (NBS) within Maternal and Child Health Services (MCH) at the Indiana State Department of Health (ISDH) in collaboration with Indiana First Steps. Indiana First Steps, the State's Part C Early Intervention Services, is administered by the Indiana Family and Social Services Administration. MCH also works closely with the Title V Children's Special Health Care Services at ISDH. The organizational setting for this proposal will also include all 107 Indiana's birthing institutions, First Steps providers including 97 audiologists, and Local Health Departments.
Purpose
The purpose of this grant proposal is to expand and refine the newly implemented statewide Universal Newborn Hearing Screening and Intervention Program (UNHS) to insure physiologic hearing screening of all infants prior to discharge, diagnostic evaluation by three months of age, and enrollment of diagnosed infants in early intervention programs by six months of age. It will also insure that every infant diagnosed with hearing loss has a medical home and the family/parents receive adequate information, appropriate consultation, and have access to other parent support resources.
Challenges
Late identification of hearing loss may result in delays in language, speech, social, cognitive, and emotional development. Research indicates that children with hearing loss who are not diagnosed in early infancy experience delays that have serious implications for educational attainment (Pediatrics, 1999). Screening is mandated by Indiana Public Law (PL91-1999). Although all birthing hospitals have been participating since July 1, 2000, Indiana faces the following challenges: (1) Screening and reporting practices must be improved among birthing institutions. Currently hospitals submit UNHS summary reports on a monthly basis. This system cannot ensure timely and accurate tracking of the infants who need repeat screening and/or diagnostic evaluation. (2) Technical assistance should be publicized and available locally to hospitals, parents, families, consumers, and providers. Although Indiana has successfully implemented its UNHS Program in all birthing hospitals, there needs to be a better understanding of the requirements for local systematic referral, follow-up, tracking, and linkage to medical homes and other parent support resources. There is also a lack of information and-education for families, the general public and providers conceming the UNHS program. (3) There is an urgent need for an integrated data management system. To ensure timely and accurate diagnostic evaluation by three months of age and enrollment in early intervention services by six months of age, there must be a linkage between hospitals' screening data, referral data, diagnostic evaluation status data, and early intervention enrollment data. Currently, these data elements are maintained in separate data systems.
Goals and Objectives
Over the next four years, the overall goal of this project is to screen all infants born in Indiana prior to hospital discharge, identify infants with hearing loss by three months of age, and begin early intervention services by six months of age, with linkages to medical homes and support to families. The objectives include:
1.) 99% of infants born in Indiana receive hearing screening prior to discharge;2.) 99% of infants who do not pass hearing test receive diagnostic evaluation by three months of age;
3.) 99% of the diagnosed infants with hearing loss start early intervention by six months of age, with linkages to medical homes, family support and appropriate consultation;
4.) Enhance UNHS program quality by developing a quality assurance training program for hospitals;
5.) Increase public awareness through UNHS education campaigns and develop 55-60 information/education sessions to families, consumers, providers, and the general public; and
6.) Develop a statewide data and tracking system for the UNHS Program.
MethodologyEvaluation
The evaluation plan will measure the impact of the project and monitor the effectiveness and efficiency of project activities. Evaluation methodology will include: (1) Documentation and reporting of the number and percentage of infants screened, referred for audiologist evaluation, diagnosed infants with medical homes, diagnosed infants enrolled in early intervention services, and referred to family-to-family support. (2) Documentation of percentage of infants who complete diagnostic evaluation by age 3 months. (3) Documentation of percentage of infants enrolled in early intervention programs by age 6 months. (4) Focus group evaluation of public awareness campaigns. (5) Parent satisfaction surveys. (6) Before and after evaluation of continuing professional education. (7) Qualitative evaluation of program methods by the State UNHS Advisory Committee. (8) Evaluation of quality indicators with new data management system. (9) Documentation of regional consultants outreach logs which reflect feedback of parent satisfaction, hospitals feedback, community sensitivity, and other related issues.
Text of Annotation
The purpose of this proposal is to expand and refine the current UNHS Program in Indiana through an enhanced system of screening, tracking, data management, and early intervention, with linkages to medical homes and family support resources for those diagnosed with hearing loss. This project will be family-focused, community-based, and culturally competent. In the next four years Indiana will reach its goal of screening all infants born in Indiana (85,000) for hearing loss, those who do not pass hearing tests will receive diagnostic evaluation by three months of age, and those diagnosed with hearing loss will be enrolled in early intervention services by six months of age, with linkages to medical homes and family support resources.
Key Words
Universal Newborn Hearing Screening, diagnostic evaluation, early intervention, medical home, family support, data management, and collaboration
Project Narrative
1. The Purpose of The Project
The overall purpose of this project is to expand and refine the newly implemented statewide Universal Newborn Hearing Screening and Intervention program (UNHS) through an enhanced system of screening. data management. tracking. and follow-up to insure physiologic screening of all infants born in Indiana prior to discharge, diagnostic evaluation of infants who do not pass initial hearing tests by three months of age, and appropriate intervention for every infant diagnosed with hearing loss by six months of age. It is also to insure that every infant diagnosed with hearing loss has a medical home and that the family/parents receive adequate information, appropriate consultation, and have access to other family support resources.
According to the American Academy of Pediatrics (1999), significant hearing loss is one of the most common major abnormalities present at birth. The frequency of newborn hearing loss is estimated to be twice that of all the other screenable newborn disorders combined. When hearing loss is detected late, critical time for stimulating the auditory pathway to hearing centers of the brain is lost. Speech and language development is delayed, affecting social and emotional growth and academic development.
Indiana expects an estimated of 250-300 infants with hearing impairment out of 85,000 infants born per year. Unless a newborn hearing screening is performed, most of these infants would not be identified with hearing loss in their early infancy. Their language and speech development would be delayed, which would have serious implications for educational attainment and career opportunities.
The U.S. Public Health Services Health, People 2000 Initiative and 2010 Health Obiectivcs recommends screening infants for hearing loss by one month of age. having diagnostic evaluation by three months of age, and starting diagnosed infants with hearing loss in early intervention services by six months of age.
Indiana has made tremendous progress in implementing a statewide Universal Newborn Hearing Screening program within a short period of time. In 1999, Public Law 91-1999 was passed by the Indiana General Assembly mandating universal hearing screening by all hospitals prior to infants' hospital discharge. All Indiana birthing hospitals have been participating since July 1, 2000. Policy manuals, general information brochures, referral brochures, and test certificates were developed and provided to all the hospitals by the Indiana State Department of Health (ISDH) in collaboration with First Steps Early Intervention Services, and the Indiana Perinatal Network Hearing Screening Subcommittee. The Newborn Screening Program (NBS) of the Maternal and Child Health Services (MCHS) provided an average of 25 educational and informational consultation, technical assistance, and phone consultations over the phone per day in the first two months of program implementation. However, due to limited preparation time and staff shortage, there was a lack of training and education to providers, families, communities, and general public. There needs to be a better understanding of the requirements for the development and implementation of local systematic referral, follow-up, tracking, and linkage to medical homes and other family support resources.
Indiana needs to expand its current hospital-centered screening program to a statewide family centered, culturally sensitive, and community-based program. This project will develop and implement an integrated data system along with the technical assistance and education available locally to providers and consumers. Over the next four years, Indiana will accomplish its goals of physiologically screening all infants. diagnostic evaluation by three months of age, and enrollment in early intervention service by six months of age. It will also ensure that every infant
diagnosed with hearing loss has a medical home and family/parents receive adequate information and appropriate consultation and have access to other parent support resources.
2. Organizational Experience and Capacity
In early 1998, a group of professionals and parents met and shared concerns about lack of newborn hearing screening in hospitals in Indiana. Months later. a subcommittee was formed by the Indiana Perinatal Network to further review the related literature and evaluate the need for the Universal Newborn Hearing Screening in the State of Indiana. This group worked intensively and submitted a legislative proposal to the 1999 General Assembly. (See Appendix A. IPN Subcommittee member list). With a full support of the legislators. a law passed (PL91-1999) to mandate Universal Newborn Hearing Screening in Indiana by all the birthing hospitals no later than July 1, 2000. (See Appendix B, Indiana UNHS Law)
In addition. Indiana Public Law 91-1999 established a twelve-member Newborn Hearing Screening and Intervention Advisory Board to provide guidance to the ISDH. The board consists of consumers, primary care providers, professionals, insurance and hospital representatives, special education administrator, an early intervention service representative, and a maternal and child service manager. (See Appendix C, Indiana State Hearing and Intervention Advisory Board) The board is to advise ISDH and other governmental agencies and organizations that serve deaf and/or hard of hearing children in the following areas:
In accordance with the recommendations of the U.S. Public Health Services Healthy People 2000 Initiative and 2010 Health Objectives, ISDH has issued initial program guidelines and protocols requiring all infants be screened prior to hospital discharge. (Those with special conditions should be screened within fourteen days of birth). The only exception to this requirement is for those newborns whose parents sign an informed refusal of screening services citing religious objectives. A repeat screen is expected for every infant who does not pass the initial screen. Those who do not pass repeat screens must be referred to First Steps and the diagnostic evaluation should be completed by three months of age. If the infant is diagnosed with hearing loss, First Steps will ensure that the child has a medical home and is enrolled in the early intervention services and Children's Special Health Care Services (CSHCS) by six months of age. The family/parents should receive appropriate consultation and have access to other parent resources and support. (See Appendix D. Universal Newborn Hearing Screening Process)
The Indiana Universal Newborn Hearing Screening program (UNHS) is administered by the Newborn Screening Program (NBS) within MCH at ISDH. Indiana NBS program was formed in 1987 and is an excellent example of collaboration between the medical homes, consumers, and public health systems to offer early detection. appropriate treatment, and early intervention. The NBS program receives recommendations from a state Newborn Screening Advisory Task Group, which consists of primary care providers. laboratory personnel, geneticists, hospital representatives, and consumers. As mandated by Indiana Law (IC 16-41-17), the program provides diagnosis. follow-up. management, family counseling, and information/ education to the general public. The program is very successful and greater than 99.3% of infants born in Indiana receive a complete newborn screening. All infants diagnosed through the program receive treatment and/or intervention.
The NBS program in Indiana works extensively with over 1.600 primary care providers, 124 local public health nurses- 107 birthing hospitals, the MCH Genetic Diseases Program, the Sickle Cell Disease Program, and many other state and national NBS organizations. A 1-800 help line located within NBS Program serves up to SO consumers and providers per day. Its well established collaboration and coordination with available resources have insured that 100% of infants diagnosed with a screened condition receive appropriate treatment and the family/parent receive adequate information.
NBS program has 14 years of successful experience. The existing administrative system and program resources provide a great foundation to the newly implemented statewide Universal Newborn Hearing Screening Program. The Program Director has eight years program management experience. She is under the direct supervision of the State MCH Director, who is also the Medical Director of the State Children's Special Health Care Need Services (CSHCS) and WIC Program. She provides strong leadership to the State MCH, CSHCS, WIC, and other public health programs and systems.
Indiana MCH, within which the NBS program is administered, is responsible for this project. It has an extensive history of program planning, implementation, and evaluation for the MCH population. MCHS distributes Title V Block Grant Funds provides services to improve the health of women of childbearing age and children, including prenatal care, prenatal and family care coordination, child health. adolescent health, genetics, and family planning. While these programs arc not directly connected to the Universal Hearing Newborn Screening and Intervention, they promote early identification and intervention and serve as referral and information sources for providers and consumers.
Children's Special Health Care Services (CSHCS) is the Title V and state funded program for children with special health care needs. Its purpose is to provide managed, high quality, comprehensive, family centered rehabilitative services to children with special needs who are medically eligible for health care services as a result of their chronic illness or disability. Its service include primary care and pre-approved specialty care services. Currently, the program provides state funding for Sickle Cell Centers to provide services for infants and families diagnosed with a hemoglobinopathy through the Newborn Screening Program. Starting October 2000. CSHCS created a new position (Hospital Liaison Consultant) contributing 50% of the stag time to coordinate with the Universal Newborn Hearing Screening program (UNHS). This specialist is an experienced and licensed social worker, with over six years experience working with the hearing impaired population. She is also a parent of a child with hearing loss.
Indiana State Department of Health (ISDH) has a wealth of experience with regard to data collection, management, analysis, and dissemination. ISDH Information Technology Services (ITS) supports the information systems and resources related to the Universal Newborn Hearing Screening project including ISDH Data Warehouse design and operation, geographic information, system. Indiana Health Data Center. and technical support for the ISDH home page and e-mail connections to local health departments. ISDH External Information Services (EIS) develops information technology systems with partners external to the ISDH and is responsible for providing technical support for the following programs areas related to the UNHS: Vital Statistics: Children's Special Health Care Services: WIC: Maternal and Child Health Services: Genetic Diseases Program.- and Newborn Screening Program. The Epidemiology Resource Center is responsible for maintaining the State Birth Problems Registry. By law (IC 16-38-4) information is collected on any condition such as a structural deformation, a developmental malformation. a genetic, inherited, or biochemical disease; birth weight less than 2,500 grams, or a condition of a chronic nature including central nervous system hemorrhage or infection.
ISDH is committed to the effective allocation of public resources to achieve high priority health goals. ISDH systematically assesses public health needs, selects initiatives, chooses success indicators, and develops strategies. These are reflected in the ISDH State Health Performance Plan (SHPP). The SHPP is developed through all the ISDH managers' preparation and reviewed by the State Health Commissioner and the Deputy State Health Commissioner for consistency with the ISDH mission and vision and the Governor's priorities. NBS and the Universal Newborn Hearing Screening are part of the priority initiatives for 2001-2003 SHPP as shown in Appendix E.
Indiana Public Law (PL2-1993) mandated centralized coordination, tracking, and follow-up of state newborn screening programs. For the program expansion concerning UNHS, Indiana First Steps, the State's Part C Early Intervention Services, provides a centralized coordination, tracking, and follow-up in collaboration with the Indiana State Department of Health. First Steps is currently administered within the Indiana Family and Social Services Agency (FSSA). The Director of the First Steps has more than 20 years of experience and is a true leader in the field of state and national early intervention services. There is a First Steps System Point of Entry (SPOE) for every county to develop individualized family service plans and assure that children with developmental delays are identified, receive diagnostic evaluation and appropriate treatment. The MCH Director serves on the First Steps Interagency Coordinating Committee.
3. Administration Structure
The principle investigators of this project will be the MCH Division Director Judith Ganser. M.D.. M.P.H. and the Newborn Screening Program Director Weifn Long. M.A.. M.P.A. This project will be administered by the Newborn Screening program under the leadership of the Division Director of Maternal and Child Health Services. The Project Director will work very closely with the Director of First Steps, the CSHCS Hospital Liaison Consultant, the regional consultants hired by this project, and the manager of External Information Services. Together they will work extensively with all the birthing hospitals. local health departments, medical providers, consumers, and the general public. (See Appendix F. UNHS Program)
The Indiana State Department of Health is comprised of four commissions including Operational Service. Health Care Regulatory Services, Information and Public Services and Public Health Services. (Appendix H) Maternal and Child Health Services is one of the nine divisions within the Public Health Services. (Appendix 1) Other divisions that will support the work of the Universal Newborn Hearing Screening Program include CSHCS, WIC, Local Liaison Office with local health departments. and Quality Improvement (state funded primary care services). Tire UNHS is administered by the Newborn Screening Program, which also administers the State's Metabolic Screening Program and Meconium Screening Program. The MCH data section manages all data received from the local agencies receiving Title V Block Grant Funds and provides staff assistance to enter the UNHS monthly statistics reported from the local hospitals.
The Epidemiology Resource Center. Information Technology Services. and External information Services are located within the Operational Services Commission of the ISDH. There is a strong collaboration between staff and programs. Timely technical assistance and information are always available.
4. Available Resources
A wide network of linkages between programs within the Indiana State Department of Health, First Steps. and other numerous private organizations provides valuable resources to this project. In-kind resources for this project are extensive and include use of staff, facilities, and support services from the Indiana State Department of Health. the Department of Education, the First Steps program. the Indiana School for tile Deaf. the Indiana Perinatal Network. 107 birthing institutions, and public health nurses at local health departments.
The Medical Director of MCHS will be the project principle investigator and will devote 5% of her time as in-kind support. The Program Director of NBS will be the co-principle investigator of this project and the project director and be committed to devote 25% of her time to manage the project. The CSHCS Hospital Liaison Consultant will devote 50% of her time to coordinate this project. and the NBS secretary will devote 10% of her time for administrative support. Other key collaborative staff who will devote a portion of their time to this project include the Director of the First Steps Early Intervention Services ( I 5%), and a senior system analyst from External Information Services
Judith Ganser, M.D., M.P.H. has over 20 years experience in pediatrics, public health and preventive medicine. Her experience at the clinical, local and state level will help ensure the collaborative and outcome-based nature of this program.
Weilin Long has more than eight years program management. experience. She has successfully supervised over 65 different programs at the county department. city division, and state agency level- in addition to private business and non-profit organizations. She will bring her program planning and development experience to this program.
Maureen Greer, the Program Director of First Steps has 20 years of early intervention program administration experience and is a leader in the field of state and national early intervention programs. First Steps Early Intervention Services under her management is committed to working with ISDH to assure services and gather all relevant data on diagnostics and services.
Darlene Magnabosco, die Hospital Liaison Consultant of CSHCS has more than six years experience providing case management, advocacy, referral and placement, and other consultation to families of children with hearing impairment. She is also a parent of a hearing impaired child. Her newly created position within CSHCS as a Hospital Liaison Consultant will maintain an effective liaison and referrals system between UNHS. CSHCS, First Steps Early Intervention Services, hospitals, local health department. and other service providers.
Automation technical assistance and ISDH data information will be valuable to the project. These technical resources consist of access to personal computers, hardware and software, the agency network, and Internet access.
As indicated above, the State NBS has already established its collaboration and coordination with 107 birthing hospitals, 124 public health nurses at local health departments, over 1,600 primary care providers, and many other organizations. The existing newborn screening systems and program resources are providing a strong foundation to the newly implemented Universal Newborn Hearing Screening Program.
5. Identification of Target Population and Service Availability
Indiana's population in July of 1999 was estimated to be over 5.9 million (compared to 5.4 million in 1990). The states growth in population is lower than tile estimated growth rate of the nation (7.2% and 9.6% respectively). but faster than its growth rate in the 1980's. In 1998, African Americans were 8.2% and Hispanic/Latinos were 2.5% of the general population. The minority population. especially Hispanic/Latino and Asian is expanding faster than the majority population. Black and Hispanic Children account for 10% and 3.4% respectively of child population. There is significant representation of rural and urban areas with a broad socioeconomic presentation. Many of the rural counties are classified as Medically Underserved Areas or Health Professional Shortage Areas by the federal government.
The target population served by this project will be the estimated of 85.000 infants born in Indiana per year and their families. This project will target all infants born in Indiana and subsequently focus on infants who do not pass initial screening and need diagnostic evaluation. and infants who are diagnosed with hearing loss and their families. Indiana expects 250-300 infants with hearing impairment out of 85,000 annual births in Indiana per year. This project will also target hospitals, audiologists and early intervention activities for educational programs and technical assistance. Hospitals who are experiencing high referral rate (>6%) will be targeted for technical assistance on a priority basis.
Over the first five months of the UNHS program implementation, all birthing hospitals have participated in universally screening the infants born in their facilities. They have either purchased screening equipment or have contracted with the outside audiologists. The ISDH. in collaboration with the First Steps and the IPN Hearing Screening Subcommittee, has developed and provided information brochures and referral brochures through the birthing hospitals to the parents. Screening certificates were also developed and provided to all (lie hospitals. A UNHS conference/vendor fair was held to acquaint hospitals with available UNHS equipment. (Sec Appendix J for brochure and screening certificate)
Each birthing hospital is responsible for referring each child who fails the newborn hearing screen to First Steps. This referral information is also reported to the ISDH monthly for tracking purposes. The data are crossed checked by ISDH and First Steps. The county First Steps point -of-contact is responsible for contacting the family to ensure necessary confirmatory diagnostics are conducted. Upon confirmation of a hearing loss and with the consent of the family, an Individualized Family Service Plan is developed and all the other needed services are identified for referral.
6. Needs Assessment
In the state as well as among colleagues at the national level. Indiana is known for making tremendous progress in implementing the Universal Newborn Hearing Screening Program within a year. This effort improved of Indiana's capacity to successfully identify strategies to meet the identified needs and serve the estimated 250 - 300 infants with hearing loss per year.
In July 1998, Indiana Perinatal Network (IPN) convened a subcommittee of experts to assess the need for Universal Newborn Hearing Screening in Indiana. The subcommittee reviewed the current literature and evaluated the need for Universal Newborn Hearing Screening in Indiana. They also looked at other related issues including costs related to program development for the state and for hospitals, costs related to delayed hearing screening, and resources available to consumers and providers. In November 1998, the IPN conducted a telephone survey of Indiana hospitals to evaluate the status of hearing screening in Indiana. This survey obtained responses from 97 birthing hospitals. At that time only 15% of them universally screened infants and another 24°/o of them performed targeted newborn hearing screening.
A group of parents and professional lobbied for a UNHS legislative proposal to the General Assembly. In 1999, Public Law PL91-99 was passed mandating Universal Newborn Hearing Screening by all birthing hospitals effective July I, 2000. At the present time 85% of birthing hospitals report their screening and follow-up results to ISDH. The rest of the hospitals are preparing administrative protocols for submission of their report. Initial data indicates a higher referral rate than required by the expected incidence rate. Referral will be tracked to determine the false-positive rate in order to prioritize hospitals for quality assurance training.
In March 2000, the Indiana State Department of Health (ISDH), in collaboration with the Indiana Hospitals & Health Association and Indiana Perinatal Network conducted a survey (Appendix K) to all Indiana birthing hospitals. This survey indicates an urgent need for program operational guidelines, better understanding of hospital responsibility for the development and implementation of screening, systematic referral, tracking. follow-up and linkage to medical homes and family and parent support resources.
Although screening is mandated by Indiana Public Law (IC 16-41-17) and all the hospitals have been participating since July 1_ 2000, Indiana faces the following challenges to meet the goals of the U.S. Public Health Service's Healthy People 2000 Initiative and 2010 Health Objectives for screening infants for hearing loss by one month of age, having diagnostic evaluation by three months of age, and starting diagnosed infants with hearing loss in early intervention services by six months of age.
1.) The current hospital reporting system using monthly manual report does not adequately support timely and accurate tracking of infants who need repeat screening and /or diagnostic evaluation. Currently hospitals submit monthly summary reports by the fifteenth of each month for the previous month screening statistics.
2.) Technical assistance should be evident and available locally to hospitals. care coordinators, consumers, and medical providers. There needs to be a better understanding of and mechanism for the local development and implementation of systematic referral, follow-up, tracking, and linkage to medical homes and other parent support resources. There is also insufficient information and education available to families, consumers, the general public and providers concerning the Universal Newborn Hearing Screening program.
3.) There is an urgent need for an integrated data management system. To ensure timely and accurate diagnostic evaluation by three months of age and enrollment in early intervention services by six months of age. there must be a linkage between hospitals' screening data, referral data. diagnostic evaluation status data, and early intervention enrollment data. Currently, these data elements are collected and maintained in separate data systems. This inhibits staff from ensuring timely service to the targeted population.
Indiana needs to expand its current hospital-centered screening program to a statewide family centered. culturally sensitive, community-based program. This project will develop and implement an integrated data system along with technical assistance and education available locally to providers and consumers. These enhancements will further ensure the screening of all infants born in Indiana. appropriate diagnostic evaluation by three months of age, and enrollment in early intervention service by six months of age. In addition, the data link to early intervention activities and expanded parent information resources will help to ensure verification that every infant diagnosed with hearing loss who will have a medical home and that their family/parent receive adequate information and appropriate consultation and have access to other parent support resources.
7. Collaboration and Coordination
The ISDH supports an environment of collaboration and coordination. MCH has a formal Memorandum-of-Understanding with FSSA. (n addition, MCH formally collaborates with the Indiana Perinatal Network and provides funding through a Title V Grant. The MCH UNHS Section has worked closely and continuously with these organizations in the development and initial implementation of the UNHS. Furthermore, MCH maintains a very close working relationship with the Indiana Chapters of the American Academy of Pediatrics, and the American Academy of Family Physicians, Indiana Hospital and Health Association, Indiana Chapter of March of Dimes, Indiana Perinatal Network, Indiana School for the Deaf, medical providers, and educators. The ISDH maintains close contact with the local communities. providers, and the local health departments through ISDH Local Liaison Office and through the many Title V funded contracts with local agencies administered through the MCH.
The rapid implementation of the statewide Universal Newborn Hearing Screening in all the 107 birthing hospitals is the result of the support from Indiana's legislature together with a large body of professionals, parent advocates, parents, and medical providers. As indicated earlier in this application, it was the collaborative effort of the group of parents and professionals who initiated and submitted a legislative proposal to the 1999 General Assembly Session. With remarkable support of legislators PL91-1999 was passed mandating Universal Newborn Hearing Screening by all birthing hospitals effective July 1, 2000. At the present time $5% of birthing hospitals report their screening and follow-up results to ISDH. The rest of the hospitals are preparing administrative protocols for submission of their reports. Initial date indicates a higher referral rate than required by the expected incidence rate. Referrals will be tracked to determine the falsepositive rate in order to prioritize hospitals for quality assurance training. This support and collaboration will be even stronger as this project is carried out to expand the newly implemented program to be more family-centered. culturally sensitive, and community-based.
The NBS program and First Steps Early Intervention Services have been collaborating to develop a tracking system for infants who tail the hearing screen. Audiologists and speech professionals are working with First Steps to assure appropriate diagnostic and treatment services. The Indiana Perinatal Network and Indiana Chapter of the Academy of Pediatrics have publicized the program to their members. The Indiana Hospital and Health Association participated in development of the program and has encouraged member hospitals to comply with the program rules.
The primary collaboration of the state UNHS will continue to be the partnership between the Indiana State Department of Health and the First Steps Early Intervention Services with recommendations from the Indiana State Universal Newborn Hearing Screening and Intervention Advisory Board. First Steps provides care coordination. tracking and follow-up. diagnostic and treatment services for infants who do not pass hearing screening. The UNHS Project Director and the First Steps Director will continue to communicate weekly to evaluate program progress and outcomes.
The Children's Special Health Care Services (CSHCS) within ISDH is the Title V and state funded program for children with special health care needs. Its purpose is to provide managed, high quality, comprehensive. family centered rehabilitative services to children with special needs who are medically eligible for health care services as a result of their chronic illness or disability. Currently this program collaborates successfully with the Newborn Hearing Screening Program and the First Steps Intervention Services. Indiana has received a Special Project of Regional and National Significance (SPRANS) grant to promote integration of services. Its purpose is to increase access to local medical homes- community based services for families. Nvith linkages to other family support resources. This program has been successful in accessing additional children with special health care needs. In 1996. there were less than 3.(10() children enrolled in the CSHCS Program and in 1999 this number had increased to 7,700. It has also promoted the medical home concept for CSHCS and First Steps clients. Referral to both programs is made directly from neonatal intensive care units and county level system points-of-contact.
Indiana's Governor has appointed a twelve-member Newborn Hearing Screening and Intervention Advisor), Board consisting of consumers. primary care providers. professionals, insurance and hospital representative. special education administrator, intervention service representative, and maternal and child service manager- This board advises ISDH and other governmental agencies and private organizations that serve deaf and/or hard of hearing children regarding appropriate testing procedures: detection plans and procedures: the format and information contained in reports; uniform reporting procedures; centralized coordination, tracking, and follow up, appropriate diagnosis and management of affected newborns and counseling support for families/parents: educational outreach to medical professionals and the general public: and coordination of medical, social, and educational services to affected families.
The proposed plan for this project is to maintain and encourage the current collaboration and coordination that has been already built among the Indiana State Department of Health, the First Steps Intervention Services, the State Universal Newborn Hearing Screening and Intervention Advisory Board, hospitals, the local health departments, parents and families, medical providers, and other organizations. If funded, technical assistance, consultation, information and education will be available locally and stronger linkages will be built among these partners.
This project will encourage a deeper level of collaboration and coordination especially among tit-, local families, intervention services. medical homes. and other family/parent support resources to expand the current hospital-centered screening program to a statewide family-centered, culturally sensitive. and community based program. Substantial input from consumers will be sought at all stages of this project. Staff will coordinate with the Indiana Parent Information Network. parent coordinators in Riley Hospital for Children and other hospitals, and local First Steps point-of-contact to identify consumers and make education available to them locally.
Program staff will also work with the State Minority Health Coalition. 16 local Minority Health Coalitions, the Hispanic Center. the Indiana Chinese Community Center, and other minority groups to provide outreach to minority families with information and education about newborn hearing screening and follow-up services. Arrangements have been made to translate all program materials into Spanish.
8. Goals and Objectives
Goals
Indiana expects 250-300 infants with hearing impairment out of 85,000 infants born per year. Indiana's statewide Universal Newborn Hearing Screening Program is designed to identify infants with hearing impairment. assure appropriate treatment and intervention, and collect information on the incidence of hearing loss in infants. Early identification, proper treatment, and timely intervention and follow-up will maximize the child's speech, language and cognitive development.
The overall goal of this grant proposal is to expand and refine the newly implemented statewide Universal Newborn Hearing Screening and Intervention System to insure physiologic hearing screening of all the infants prior to discharge. diagnostic evaluation by three months of age. and enrollment of diagnosed infants in early intervention programs by six months of acre. It will also insure that every infant diagnosed with hearing loss has a medical home and the family/parents receive adequate information. appropriate consultation, and have access to other parent support resources.
The goal will be accomplished by the use of the surveillance. education, collaboration, and integration of service and information services. The following objectives and related activities will facilitate reaching the overall goal of the project.
Objectives Objective 1: By December 31. 2002. 99% of infants born in Indiana will receive hearing screening prior to discharge.
Proposed activities
Proposed Activities
Proposed Activities
Objective 4: By July 1, 2001, develop and start a quality assurance training program to all the 107 birthing hospitals, 97 audiologists, and 87 local First Steps point-of-contacts, 124 public health nurses at the local health departments. The training will be completed to all the listed organizations by March 30. 2005.
Proposed Activities
Objective 5: By December 31. 2004. increase public awareness through two education campaigns and develop 55-60 information and education sessions to families, consumers, providers, and the general public.
Proposed Activities
Objective 6: By March 31. 2005, develop and implement a statewide data and tracking system for the Universal Newborn Hearing Screening Program.
Proposed Activities
Funds obtained from this grant will be used to develop an outreach program. Six part- time regional consultants will be hired to work closely with ISDH, First Steps, birthing hospitals, the local health departments. medical providers. parents/families, and other organizations. They will come from local regions. understand hearing screening issues, be sensitive to local cultures. and have an audiology or related background. They will provide technical assistance and consultation to hospitals and families in their regions. They will reach out to parents. families, communities. hospitals. and medical providers concerning hearing screening, intervention issues and practice. They will assist in development of the public awareness campaigns, provide education sessions to the general public, and deliver quality assurance trainings to all birthing hospitals and audiologists (First Steps providers) in the regions they are assigned to.
Funds will be used to hire a computer consultant. The consultant will evaluate the existing data systems. identify selected service data standards. develop a short-term plan to implement a system that will link intra-department data (NBS data, Meconium Screening data, and UNHS data) and First Steps data to decrease duplicated data entry efforts. This plan will be implemented within the first 6 months of the project and the ISDH and the First Steps Intervention Programs will be able to cross report and cross check screening data, referral data, and intervention enrollment data in a more efficient and effective way. This consultant will also be responsible for evaluating the current data and tracking system and develop a long-term plan to implement a statewide data and tracking system that will ensure a linkage between hospitals' screening data, referral data, diagnostic evaluation. A portion of the funds will be used to purchase related computer hardware and software for the ISDH and the First Steps Intervention Services.
A portion of the finds from this grant will be used for printing and distribution of administrative guidance. education and information materials to hospitals, parents/families, medical providers, specialists. and the general public including policy manuals, program guidelines, test certificates, brochures, parent handbooks, and other professional information and family resources.
Other portions of the grant funds include travel and phone expenses for regional consultants and additional travel expenses to Washington D.C. for the principle investigators of this project as required by this grant.
Funds and expenses will be monitored and tracked by the Project Director and the ISDH Finance Division through quarterly- budget update sessions.
10. Project Methodology
The project will be carried out b- the state Newborn Screening Program. under the: leadership of' the Medical Director of Maternal and Child Health Services. in collaboration with First Steps Early Intervention Services. The Project Director will be the NBS Program Director who will be responsible for all the program activity planning and implementation and staff supervision,
Upon notification of the grant award. the Project Director will develop job descriptions for and hire the regional consultants and computer consultant within the first four months of the project. The consultants will be hired from local regions. with preference to audiologists who are also First Steps providers. The understand hearing screening issues, are sensitive to local cultures, and have an audiology or related background. They will be available to provide technical assistance and consultation to hospitals and families in their region. They will reach Out to parents. families, communities. hospitals, and medical providers concerning hearing screening, intervention issues and practice.
The regional consultants will work 8 hours a week for this project. Each of them will be assigned to 16-18 hospitals in his/or her region. Their responsibilities include:
10. Attend stag meeting twice a year or as requested.
The regional consultants will report to the Project Director directly and work closely with the Hospital Liaison of CSHCS. the First Steps point-of-contact, local hospitals UNHS Coordinators, the Public Health Nurses at the local health departments. medical providers, parents/families, and other organizations.
The core function of the regional consultants is to make information, education, technical assistance, and consultation available locally to the parents/families, communities, hospitals, and medical providers concerning hearing issues. Within four years, this project will allow Indiana to provide ii-60 education sessions to general public, families, consumers, and providers. By the end of the fourth project year, all Indiana's birthing hospitals and audiologists will have received a minimum of one quality assurance training program in addition to program in-service training. This effort will encourage collaboration and coordination among all levels of state agencies, service providers. parents/families consumers, and medical providers. There will be a better understanding of the requirement of screening, systematic referrals, follow-up, tracking, and linkage to medical homes and other parent support resources.
In addition, a data consultant will be hired to address the data integration and implementation plan. The hiring will be a collaboration between MCH and ITS. This computer consultant will have the following responsibilities:
The Senior System Analyst of EIS will collaborate with the Project Director to oversee the computer consultant's project related activities and create a data integration and implementation plan. Together with other internal ISDH and First Steps technical staff: we will use information compiled by the computer consultant to ascertain the feasibility of integrating the data systems identified in this project.
Phase I - Firsts 12 months
The first step of this process will be to examine the existing data system and identify needs and possible linkage of the existing systems including state Newborn Screening Data System. Meconium Screening Data. Genetic Program data. birth defects data. and CDC's Early Hearing Detections and intervention (EHDI) reporting system. A short- term plan will be developed to implement an integrated data system that will decrease duplicated data entry effort and allow a prompt cross report and cross checking of screening and follow up information between ISDH and First Steps. The project will form a work group that will consist of the principle investigators, the Project Director, the Senior System Analyst of EIS, the Director of the First Steps Early Intervention Services, the MCH Grant/Budget Manager, and the MCH Data Manager. This initial integrated data system will be implemented within the first six months of the project.
The second step will be to develop a long-term plan to implement a statewide data and tracking system that will create a linkage between hospitals' screening data. referral data. diagnostic evaluation status data, and early intervention enrollment data. A survey will be developed and conducted to all birthing hospitals to assess their current data system. identified data needs, and existing level of coordination and collaboration ~on data issues.
By the end of the first 10 months. a data Integration and implementation plan will be developed. This plan will outline feasibility. requirements. and budget for an integrated data and tracking system that will create linkages between hospitals, audiologists, ISDH, and First Steps, and CDC's EHDI reporting system. This plan will also identify internal and external entities that may have access to this system as well as appropriate levels of access. The plan will be approved by the Medical Director of the MICH Services and the First Steps Director and submitted to the State Hearing Screening and Intervention Advisory Board for comments.
Phase II - Year 2 and Year 3
Internal ISDH technical staff will use information and plan compiled in Phase I to develop protocols of developing and implementing statewide integrated data and tracking system for the Universal Newborn Hearing Screening Program. EIS will provide support for technical support related activities.
Phase III - Year 4
The integrated data system will be fully implemented in Indiana by December 31, 2004. Six sessions of technical assistance training will be held at ISDH regarding the use of the integrated system. The regional consultants will coordinate with the Hospital Liaison to collect local inquires and ensure a smooth transition and implementation by all hospitals. ISDH will provide in-house training when needed.
A work plan describing the program activities is included in the Project Activities Time Allocation Table (Attachment F)
11. Evaluation Plan
Over the next tour years. the overall goal of this project is to screen all infants born in Indiana prior to hospital discharge. Identify infants with hearing loss by three months of age, and begin
early intervention services by six months of age. with linkages to medical homes and support to families. The objectives include:
An extensive regional outreach program will make education, training, information, and consultation available locally to the parents, families, communities, hospitals, and medical providers concerning hearing screening, intervention issues and practice. This program will increase public awareness and encourage a better understanding of the requirements of the UNHS Program including systematic referral. follow-up, tracking, and linkage to medical homes and other parent support resources.
An integrated data and tracking system will build a linkage between hospitals' screening data. referral data, diagnostic evaluation status data- and cads intervention enrollment data to ensure
timely and accurate diagnostic evaluation by three months of age and enrollment in early intervention services by six months of age.
Evaluation is one of the key elements of this project. Its purpose is to share information and identify gaps in the programming and guide the future planning of the program. The project evaluation over the four project years will be continuous and ongoing, multidimensional, open, honest, and objective. We will evaluate the impact of the project as well as the effectiveness and efficiency of the project activities.
Funds obtained from the grant will impact on the U.S. Public Health Service's Healthy People 2000 Initiative and 2010 Health Objectives of screening infants for hearing loss by one month of age, having diagnostic evaluation by three months of age, and starting diagnosed infants with hearing loss in early intervention services by six months of age. The implementation of the project activities will also have positive impact on two MCH infrastructure-building state performance measures and one federal performance measure:
The implementation of this project will also have impact on accomplishment of other related Healthy people- 2010 objectives including prenatal care (16-6), Prenatal substance exposure (1617), medical home for children with special health care needs (16-22), and service system for CSHCN (16-23).
The levels of the project impacts discussed above will be evaluated through the number and percentage of infants screened, number of infants referred for audiologist evaluation, number of diagnosed infants with medical homes, number of diagnosed infants enrolled in early intervention services, and number of infants referred to family-to-family support. The State Hearing Screening and Intervention Advisory Board will form a working group consisting of public health administrators, early intervention managers, parents/families, medical providers, and consumers to evaluate these impacts twice a year. This data will be evaluated from the perspective of: individual hospitals/care providers, regional program implementation, and statewide program implementation. Particular attention will be focused on the quality assurance indicators of the system, including the false positive referral rate and lost to follow-up rate (reflecting those identified newborns not undergoing appropriate diagnostic or intervention services). The UNHS data system will collect these data and the State NBS program within MCH/ ISDH will be responsible to compile and submit related data to the working group for evaluation. The results will be reported annually to ISDH and FSSA executive staff, the State Universal Hearing and Intervention Advisory Board. legislators- hospitals, audiologists, advocates, parents, and other interested parties.
Upon the funding of the project, a focus group will be formed consisting of parents, medical providers, hospital coordinators, and consumers to evaluate the effectiveness of the public awareness campaigns and program outreach efforts. This group will assist the ISDH to develop and conduct a pre-survey for local hospitals, medical providers, and residents. The sample for the survey population will be randomly selected and the data will be used later to judge the effectiveness of the projected program activities. This group will meet twice a year six months after the consultants are hired. All the other data \% ill be collected and compiled by the State NBS program including number and percentage of the infants screened prior to discharge, percentage of infants who complete diagnostic evaluation by age 3 months, and percentage of infants enrolled in early intervention programs by age 6 months.
A parent satisfaction survey will be developed and conducted to all the parents of the infants who are referred for diagnostic evaluation and to those parents with infants diagnosed with hearing loss. The State NBS program will send the survey to the parents within six months of infant's birth. A specific plan will be developed in the first month of the project to designate staff responsibilities and protocols.
A before-and-after class evaluation will be developed and conducted for all the continuing professional and general education sessions. The evaluation questionnaires will be developed within the first four months of the project and discussed with the regional consultants. The evaluation will be collected by the regional consultants and the Hospital Liaison and submitted to the ISDH for review and evaluation. The new data and tracking management system will make evaluation of quality indicators more effective and efficient.
The State NBS program will develop standard outreach logs for the regional consultants and the Hospital Liaison that will document activities of outreach and providing information, education, consultation, and technical assistance to parents, hospitals, medical providers, consumers, and the general public in the regions they are assigned to. This document will reflect daily feedback of parent satisfaction, hospitals efforts. community sensitivity, and other related issues. Reports along with a copy of this documentation will be submitted to the Project Director and used for evaluation.
The State Newborn Hearing Screening and Intervention Advisory Board will meet twice a year to conduct qualitative evaluation of program methods and related protocols. All the compiled data for evaluations of project activities will be submitted and discussed at the meeting. Results will be documented and reported to the related parties. Other evaluation of program effectiveness will include review of brochures, handbooks. policy manuals, program guidelines and other program information and education materials on a yearly basis.
Evaluation of project evaluation methods may also be necessary. Staff will document ongoing evaluation efforts. clarify evaluation needs. identify more effective and objective methods, and make improvement accordingly.
Please see Attachments E and F for more details.
Indiana will expand the current hospital-centered screening program to a statewide family-centered, culturally sensitive, community-based program. The State MCH Director and NBS Program Director will oversee this project. The project will hire six part-time regional consultants to work closely with ISDH, First Steps, local hospitals, local health departments, medical providers, parents/families, and other organizations. The consultants will come from local regions, understand hearing screening issues, be sensitive to local cultures, and have an audiology or related background. They will reach out to parents, families, communities, hospitals, and medical providers concerning hearing screening, intervention issues and practice. A data consultant will be hired to address the need for an integrated data management system.