The New York State Department of Health intends to make substantial progress in implementing a statewide system of universal newborn hearing screening during the four-year period of the grant. The project described combines planning and demonstration with the goal by the end of the four year period to have 75% of the birthing hospitals in NYS engaged in universal newborn hearing screening. The target population is 163 birthing hospitals in New York State with a 1997 annual birth rate of 257,000.
The Department of Health is the state Title V agency, the state Medicaid agency and is also responsible for the Early Intervention Program for infants and toddlers, birth through age three. The proposed Newborn Hearing Screening Program will be situated in the Bureau of Child and Adolescent Health, placing it structurally in the same location as the Early Intervention Program and the Children with Special Health Care Needs Program.
The Department intends to use this opportunity to fund staff to coordinate program development with existing programs both within and outside of the Division of Family Health and to develop a centralized data system needed to provide quality assurance in the conduct of statewide newborn hearing screening.
New York State passed legislation in November 1999 requiring the development of a statewide system of universal newborn hearing screening. With an official start date of April 2000, this funding is opportune to give the Department the capacity to develop and manage the development of initiation of this program. The Department has demonstrated its capacity and leadership to carry out the proposed implementation of a statewide system through documentation of the prior success of the NYS Newborn Hearing Demonstration Program (1995-1998). Data from the project demonstrated that in a three year cohort of 72,308 babies, 96.6% were screened prior to discharge. The percent of babies who failed the inpatient screening decreased from 4.4% in the first year to 3.7% in the third year. Percent of babies returning for an outpatient screen ranged from 40% to more than 75%, depending on the hospital location. The median age of hearing aid fitting was 7.5 months. And 33% of the infants identified with hearing impairment had none of the risk factors, which would have identified them on a high risk screening questionnaire.
The proposal outlines two phases to accomplish the stated goal, a planning phase to occur during year one, and a phased-in implementation phase occurring in years two through four. The planning phase includes the augmentation of Early Intervention Coordinating Council (EICC) and its related subcommittees with families and experts in newborn hearing screening and intervention in order to develop a rationale plan for statewide implementation. Plan development will include needs assessments for screening, assessment and early intervention. The planning phase will include assessment of current Departmental data bases amenable to the addition of data elements related to newborn hearing screening, follow-up, intervention and outcome and the linkage of those systems for a core data set on statewide newborn hearing screening. Data systems likely for consideration are the Perinatal Database (internet-based electronic birth certificate information and hospital newborn information), the Kids Integrated Data System (KIDS-the data on services provided to infants and toddlers enrolled in the Early Intervention Program), and the emerging capacity to link data systems and provide access to them through the internet known as the Integrated Child Health Information System (ICHIS).
The implementation phase details training to hospitals on implementing hospital-based screening and tracking programs and collection of required data, information for parents (materials and training) of infants and children with hearing impairment in collaboration with parent resources in the state such as Parent to Parent and Family Voices.
PROJECT NARRATIVE
4.1 NEW YORK STATE NEWBORN HEARING SCREENING PROGRAM
4.2.1 Purpose
According to the American Speech Language and Hearing Association (ASHA), "Every day in the United States, approximately 33 babies (1 to 3 infants per 1,000) are born with significant hearing loss. Hearing loss is the most common congenital disorder in newborns; 20 times more prevalent than phenlyketonuria (PKU), a condition for which all newborns are currently screened. The average age that children with hearing loss are identified in the U.S. is 12 to 25 months of age. When hearing loss is detected late, critical time for stimulating the auditory pathways to hearing centers of the brain are lost. Speech and language development is delayed, affecting social and emotional growth and academic achievement.
Less than 20% of the babies born in the U.S. are born in hospitals with universal newborn hearing screening programs. It is estimated that another 3 infants per 1,000 are born with moderate hearing loss (a total of 6 infants per 1,000 over 60 babies born a day) could be identified with wide-use of universal newborn screening and intervention programs. A majority of hospitals only test infants considered "at risk for hearing loss," who have conditions such as low birth weight, a family history of hearing problems or other specific medical conditions. However, research indicates testing only those babies considered "at risk" results in the identification of only 40-50% of children with hearing loss.
The U.S. Public Health Service’s Healthy People 2000 Initiative and 2010 Health Objectives recommend screening infants for hearing loss by 1 month of age, having diagnostic follow-up by 3 months and enrolling infants in appropriate intervention services by 6 months of age. The Joint Committee on Infants Hearing recommends that all newborns is screened for hearing loss. They also recommended that all infants with hearing loss be identified before 3 months of age and receive intervention by 6 months of age. A National Institutes of Health (NIH) Consensus Panel in 1993 recommended hearing screening of all newborns. The consensus report concluded that the best opportunity for achieving this goal is provided by the development of hearing screening programs for newborns in hospital nurseries or in birthing centers, prior to discharge. The Academy of Pediatrics, in its 1999 position statement, endorses the implementation of universal newborn hearing screening and recommends the program parameters, which characterize an effective universal newborn hearing screening program.
Advances in technology have made the costs and efficacy of newborn hearing screening both realistic and feasible. Two types of electrophysiologic procedures are used to screen newborns, either singly or in combination: ABR (auditory brainstem response testing) and OAE (otoacoustic emissions testing). Hospital based newborn hearing screening costs typically range between $25 and $40.
Infants identified with hearing loss can be fit with amplification by an audiologist as young as 4 weeks of age. With appropriate early intervention, language, cognitive, and social development of these infants is very likely to develop on par with hearing peers. Recent research concluded that children born with a hearing loss who are identified and given appropriate intervention before six months of age had significantly better language skills than those identified after six months of age. Studies have also indicated that detection of hearing loss during infancy followed with appropriate intervention minimizes the need for rehabilitation during the school years." (ASHA)
The New York State Department of Health submits this application for a combination of planning and demonstration. Largely as a result of the NYS Newborn Hearing Demonstration Program (1995-1998), approximately 10% of the annual birth cohort of 257,000 are currently screened in hospital-based universal hearing screening programs in the state. New York legislation requiring the development of universal newborn hearing screening was signed into law in November, 1999. It directs the Commissioner of Health to plan and implement a program of universal newborn hearing screening on a statewide basis. The Department of Health will build upon the experiences of the Newborn Hearing Demonstration Program to expand hearing screening programs to 75% of the annual birth chart in the state.
Organizational Experience and Capacity
4.2.2.1 Completion of a Successful Universal Newborn Hearing Screening Demonstration Program
In 1994, as the lead agency for Part C (formerly Part H) of IDEA, the Department of Health included funding to support a demonstration program for universal newborn hearing screening in its annual application to the US Department of Education. The department issued a Request for Proposals to all regional perinatal centers in New York State to fund a three year demonstration project to assess the efficacy and costs of universal newborn hearing screening in NYS. Regional perinatal centers were designated as potential recipient sites because of the high proportion of high-risk babies born in and transferred into their neonatal intensive care units. These centers were also considered appropriate sites from which to disseminate findings and provide training and technical assistance to affiliated regional hospitals should the project prove effective.
Seven centers (eight hospitals), geographically dispersed across the state, were selected as demonstration sites. The contracts began officially in January, 1995, although most sites were not able to initiate universal screening until May or June, 1995. The screening protocol was allowed to vary from hospital to hospital, although criteria for what is regarded as a pass or fail for each type of testing was standardized across sites. Screening was accomplished by Transient Evoked Otoacoustic Emission testing (TEOAE) or Auditory Brainstem Response (ABR) screening. With one exception, the hospitals used a two-stage in-hospital screening protocol. Most tested newborns in the hospital with an OAE and if the baby failed the OAE, an ABR was performed. Babies who failed the in-hospital screening were brought back at 4-6 weeks of age for a screening on an out-patient basis. Babies who failed the outpatient screening were referred for a diagnostic hearing evaluation.
A brief summary of the demonstration project and its findings can be found in Appendix 7 Analysis of the estimated 1997 costs, inclusive of inpatient and outpatient screening, is placed at $30 per baby for inpatient and outpatient screening. These costs include all equipment (amortized over a five-year period), personnel (including fringe benefits), supplies and travel. Overhead costs were not included in this estimate.
The implementation of the NYS Universal Newborn Hearing Demonstration Program provided the Department with the following leadership opportunities: ?
In collaboration with the National Center for Hearing Assessment and Management (NCHAM), the conduct of training in screening techniques and the use of HiTrack (commercially available software through NCHAM which provides for automatic linkage of screening results with a package of followup supports and tracking options) for all participating hospital sites.
Provide feedback to NCHAM towards the improvement of their tracking and data system, HiTrack. Five of the seven hospital sites used HiTrack .
Present updates on the progress of the demonstration at the annual conferences of the NYS Speech Language and Hearing Association (NYSSLHA).
Contribute NYS summary data to the Centers for Disease Control and Prevention in their pilot test of a national database for newborn hearing screening.
Presentation of poster session and panel presentation at the American Public Health Association.
Panel presentation at the November 5, 1999 kick off press conference for the National Campaign for Hearing Health.
In addition to the leadership opportunities provided to Department of Health staff, the demonstration program allowed hospital site participants to make a series of presentations at national meetings including ASHA and the Academy of Pediatrics.
4.2.2.2 New York State Teaching Day on Newborn Hearing Screening
At the conclusion of the demonstration project, the Department sponsored a one-day teaching day held in NYC at the New York Academy of Medicine. More than 150 health professionals, administrators and advocates attended, including the then current sponsors of the proposed NYS legislation on newborn hearing screening. The structure of the teaching day covered components necessary for hospitals to conduct universal newborn hearing screening programs. It included training requirements for hospital staff and screeners, in-hospital procedures such as who to involve in early stage planning, and tracking and followup issues.
The Department’s leadership role in the conduct of the demonstration program and its related teaching day and technical assistance opportunities contributed to the recent passage of the New York State legislation directing the Commissioner of Health to develop a program of universal newborn hearing screening beginning April 1, 2000. It is important to note that the timing of this funding opportunity is propitious in assisting the Department to plan for and implement a statewide universal newborn hearing screening program in NYS. The legislation (A-04152) provides
for the following (Appendix 2):
The timing of this legislation is coupled with the Department’s leadership in systems development for Children with Special Health Care Needs (CSHCN). The Department has a long history of leadership activities at the national level. Most recently, Dr. Christopher Kus, the medical consultant to the Division of Family and Local Health was a member of the "Operationalizing a Definition of CSHCN Workgroup" Dr. Kus serves as the chair of the Service Delivery and Financing Systems Committee of AMCHP. He is Co-Chair of the Medicaid Maternal and Child Health Technical Advisory Group which serves as an advisory body to the Health Care Financing Administration (HCFA) to provide timely expertise on policies, guidelines and programmatic issues affecting the health status of mothers, children and families served by Tittles V, XIX, and XXI programs. He is also Co-PI on a CSHCN Managed Care grant.
Administration and Organization
4.2.3.1 Current Structure and Organization
The State Health Department, as the Title V agency and the State Medicaid agency, plays a major role in assuring quality and access to essential maternal and child health services in NYS. Maternal and child health programs are located throughout the Department of Health but most are located in the Center for Community Health and the Division of Family and Local Health, where administrative oversight for the MCH Block grant is vested. (Appendix 3) As the title V agency, the Department is responsible for reporting progress against national performance measures. Newborn hearing screening is a population based performance measure. The Department reported progress for the core national performance measure #10 "Percentage of newborns who have been screened for hearing impairment before hospital discharge." Levels of screening reported for the years 1995 through 1997 were 6%, 11% and 11% respectively.
Although many of the programs throughout the Center for Community Health play a role in outreach and access to care for underserved families, those which are particularly relevant to the proposed implementation of universal newborn hearing screening in NYS is briefly described below. The Division of Family and Local Health, through the Bureau of Child and Adolescent Health, is responsible for Early Intervention (Part C) and programs for children with special health care needs. The Division is the central point of contact with the 58 municipal health departments. The NYS Department of Health, as the State Title V agency has the capacity to provide:
The Bureau of Child and Adolescent Health houses two programs particularly pertinent to the implementation of newborn hearing screening, the Children with Special Health Care Needs Program and the Early Intervention Program. The CSHCN Program provides services to children ages birth to 21 that are not provided through Medicaid or SSI Medicaid. Last year the program embarked on an infrastructure and capacity building initiative to strengthen the ability of the program to identify, report and act on identified needs for the CSHCN population and their families. In addition, the program designates specialty centers under the Physically Handicapped Children’s Program that promote access to a comprehensive evaluation and treatment services by specialists for those children in whom a severe chronic illness or physical disability is suspected. Many of these centers are speech and language centers. In 1998, approximately 1,500 children received case management services in 12 counties and approximately 5,000 children received specialty care. The program employs three parents of children with special health care needs and links our agency to parent groups including Family Voices, Parent-to-Parent, MUMS and other statewide parent advocacy agencies. These measures are helping improve our focus on comprehensive, family-centered, community-based, culturally competent coordinated care. Ms. Ruth Walden, our Title V Family Specialist, has been leading efforts to improve the inclusion of families in policy and systems design, and implementation and evaluation of CSHCN services.
The Bureau of Women’s Health (within the Division of Family Health) coordinates NYS’s system of regionalized, perinatal centers (RPCs). These Centers provide tertiary level clinical care to high-risk mothers and newborns and also serve as important contact points for the Department of Health in our interactions with the health cares community. They help ensure that high-risk mothers and newborns receive appropriate levels of care by working with their affiliated hospitals to monitor perinatal morbidity and mortality and to provide education and technical assistance to physicians and others. The Bureau funds 12 Comprehensive Prenatal-Perinatal Services Networks (CPPSNs) which maintain several outreach and education efforts to promote prenatal care community wide and to address teen pregnancy prevention. The Networks also launched educational efforts with community and health care providers in multiple areas affecting early infant and child health.
Statewide perinatal data system is currently being implemented. This system involves the regional centers in coordinating data analysis for their regions and in helping their affiliated hospitals and others in the community (e.g. perinatal networks) use data for needs assessment planning and quality improvement activities. The internet-based version of the Perinatal Data System is expected to be operational by mid 2000.
The Wadsworth Laboratories houses the Genetics Program and the Newborn Screening Program. Every newborn is screened for phenlyketonuria, congenital hypothyroidism, galactosemia, sickle cell disease, maple syrup urine disease, homocystinuria, biotinidase deficiency and HIV-1 Antibodies. The newborn Screening Program consistently achieves 100% follow-up on confirmed cases.
The Newborn Hearing Screening Program (NHSP) will be placed in the Bureau of Child and Adolescent Health in order to facilitate linkage to the two major programs with which it will interact, specifically the Early Intervention Program and the Children with Special Health Care Needs Program. The Newborn Hearing Screening Program will link with advisory structure and service system structure of the Early Intervention Program. The CSHCN program will provide system structures for needs assessments, parent peer support and advocacy mechanisms (See Section 4.2.5). Newborn hearing screening program will collaborate with the Bureau of Women’s Health to use the Perinatal Database as one component of the statewide data system for newborn hearing screening. Collaboration will continue with Newborn Screening Program (metabolic screening) housed in the Wadsworth Laboratories, to develop research consortia on genetic causes of sensorineural hearing loss in children.
Available Resources
4.2.4.1 Staff Resources
Frances Stevens, M.S., (10%)Co-PI and Program Director for the Disability and Health Program, has served as the central contact for the Department for all activities related to newborn hearing screening for the last seven years. She developed the RFP for the Newborn Hearing Screening Demonstration Program, managed the contract for the conduct of the program; staffed the Newborn Hearing Screening Workgroup; planned and implemented the Teaching Day for Newborn Hearing Screening. She will continue to contribute leadership and oversight to grant activities.
Barry R. Sherman, Ph.D., (10%, NYS contribution) Co-PI, serves as Director of the Child Health Unit, under which many of the newborn hearing screening activities were carried out over the last three years.
Dr. Sherman will continue to provide technical assistance in evaluation of grant activities.
Christopher Kus, M.D., (5%, NYS Contribution) Pediatric Director, Division of Family and Local Health has been the Department’s chief contact for the development of the system of coordinated, comprehensive care for Children with Special Health Care Needs. He will continue to provide linkage to policy and systems integration between the emerging statewide system for children with special health care needs and the implementation of the statewide program for universal newborn hearing screening.
Dennis Murphy, M.P.A. (5% NYS Contribution) Acting Director, Bureau of Child and Adolescent Health will assist with moving hearing screening initiatives through Departmental channels.
Nancy Kehoe, M.S., Program Director, (5%, NYS Contribution) CSHCN, will contribute time to develop the coordination between PHCP programs and infants and young children whose parents have refused Early Intervention Services and children over the age of three require diagnostic evaluation and assistive technology for hearing impairment.
Donna Noyes, Ph.D., (5% NYS Contribution) Director of the Early Intervention Program, will work with the Program Coordinator, to coordinate EI policy and services to ensure that infants and families identified through the newborn hearing screening program receive appropriate tracking and followup through Child Find; and services, including assistive technology, and service coordination through the early intervention system.
Michael Medvesky, M.P.H., (5% NYS Contribution) M.P.H. Director of the Child Health Data Unit in the Center for Community Health, will provide linkage to the data systems to be tapped to build a statewide system for infant hearing screening. As currently envisioned, multiple data sources will be augmented and linked to provide the necessary outcome measures for newborn hearing screening.
4.2.4.2 Funds
The Department will contribute salary for the percentage contribution of each of the above listed staff. The Department will also supply funds to support travel for advisory group members in conjunction with newborn hearing related activities. The Department will provide funds for the development, printing and distribution of educational materials and will ultimately be responsible for securing funding for universal newborn hearing screening.
4.2.4.3 Equipment
Departmental support for equipment is provided with access to mainframe and PC and computer networking equipment and support. (need some language re mainframe/ HIN/ Internet access support etc. Personal computers, computer network support and office equipment will be supplied for the two personnel items requested as part of this application)
4.2.4.4 Facilities
Department of Health facilities will be available to support statewide meetings of the advisory groups on Newborn Hearing Screening. Meeting rooms are available at the Department’s two major locations (Albany and New York City), while smaller meeting room facilities for teaching and technical assistance are available through the network of 58 county health departments. The Department’s collaborative partners often provide meeting space.
Identification of Target Population and Service Availability
4.2.5.1 Target Population
Children with special health care needs are the umbrella group from which the target population of infants and young children with hearing impairment are to be drawn. Therefore, the system of services for the CSHCN forms the infrastructure within which more specialized services will reside. It is presented here in light of its charge to serve this population of children from birth to 21 years of age. In some counties, the Physically Handicapped Children’s Program pays for hearing aids for children with identified hearing impairment. A subset of this group, those children and families served by the Department’s Early Intervention System is also described because the Early Intervention Program covering infants birth to age three will be the first to be impacted by the implementation of a statewide universal newborn hearing screening program. The Early Intervention Program currently serves and will continue to serve infants and toddlers identified with hearing impairment.
A brief presentation of child and family health services in general will assist in providing an understanding of some of the challenges in implementing a statewide universal newborn hearing program in New York State.
New York State is a widely diverse state, home to a population of more than 18 million people. Its population characteristics vary almost as much as it’s diverse geography. New York City has the highest population density with 52, 808 persons per square mile, while Hamilton County in the Adirondack area has the least density, with only 3 people per square mile. A similarly diverse range of services for children and families accompanies this range of population characteristics. About one third of all New York State’s families live at or below 185% of the Federal poverty level. Poverty is more common in families headed by single females, and single-female headed households with children under age 5 are more likely than not to be living below poverty. This is true regardless of race or ethnicity. Also, child poverty is twice as common in NYC as it is in the rest of the state. The Bronx, where half of the children are poor, holds the highest child poverty rate in the State.
A significant barrier to health care is lack of health insurance. It is estimated that between 400,000 and 680,000 children under the age of 18 were uninsured in 1997. New York State’s Child Health Plus Program has made great strides in providing health care coverage to children, increasing the number of enrollees under age 20 from 159,160 in 1997 to 327,181 in 1999. Enrollment is occurring at the rate of about 10,000 children per month. Despite such growth, lack of continuous coverage and caps on length and amount of service disproportionately affect children with special health care needs. There is a great deal of variability in coverage provided by different insurers. The limitations on provisions
by some private plans, such as yearly expenditure caps and caps on
number of therapy visits, may discourage the use of needed treatments, or may result in severe financial burden if treatment is obtained. Private insurance plans may exclude or have deductibles or co-payments for durable medical equipment, pharmaceuticals, and hearing aids. Additionally, private insurance companies traditionally do not cover many costs that are not strictly medical, such as transportation and respite, but which are supportive to families. For low income, uninsured or underinsured families, the out-of-pocket expenses can result in inability to enroll in or carry out needed therapies and treatments.
Difficulties also exist for those families qualified for Medicaid. It is clear that many families who are eligible for Medicaid are not enrolled. In addition, due to changes in family income/resources and expenditures, a family may be eligible for, or may lose eligibility for Medicaid. Another source of confusion for many families is the move toward mandatory enrollment of Medicaid recipients in managed care, including the anticipated enrollment of SSI families in managed care. The development of safeguards for the provision of quality specialty care under the emerging system of managed care is still in progress.
Although NYS has clusters of high quality health providers, there are 105 federally designated primary care shortage areas in NY with more than 3.8 million people residing in those areas. Access to care in rural areas is especially variable. Providers are usually clustered in small cities and towns, but are caring for residents whose homes are scattered over large geographic areas. The problems are exacerbated by a shortage of health personnel and the deepening fiscal problems of rural health care facilities.
For children with special health care needs (CSHCN), the effects of lack of access to health care are felt more keenly than the general childhood population, resulting in increased morbidity and mortality and decreased quality of life. In New York State, it is estimated that between 800,000 and 1.6 million children have special health care needs. In a recent report, a CSHCN workgroup outlined the key issues associated with the delivery of health care that impacts CSHCN and their families:
There are many diagnoses of chronic conditions and disabilities that affect children. Although there is a range of severity of disease and disability affecting children and youth, there is a commonality of need. Caring for a child with special health care needs is a major emotional, and often a major financial, family investment. In addition to primary care needs that all children have, CSHCN have specific needs that arise because of the disability. These children need a continuum of care that allows them to move within a flexible system, addressing preventive, acute and chronic care needs. Lack of access to timely, quality comprehensive care, including specialty care, results in increased secondary conditions and disability. These conditions apply similarly to infants and children with hearing impairment.
The family is the child’s primary caregiver. Therefore a comprehensive system that includes parent support services (including training, respite, transportation and peer supports) is essential to successful daily management of CSHCN. Title V programs have recognized that caring for a child with a chronic condition within the context of the family and community is more successful than simply treating the condition. When adequate supports are available to families, they are better able to participate in effective interventions.
4.2.5.2 Service Availability: Early Intervention
The NYS Department of Health joined the federal program under Part H (now Part C) of IDEA in 1987. The Statewide Early Intervention Program, including an entitlement to EI services for eligible children and their families, was established in Public Health Law (PHL- Title II-A, Article 25) in 1992 and has been fully operational since July, 1993. The development and enhancement of services and linkages with the EI system are crucial to the success of universal newborn hearing screening system. While EI Program is voluntary and therefore may not serve all infants and toddlers with hearing impairment, it certainly will serve a very large percentage of them since audiology is one of the services offered to infants and toddlers with disabilities and their families. In addition, Early Intervention Memorandum 99-2 includes hearing loss as a condition with a high probability of developmental delay that connotes automatic eligibility for the EI Program. EIP structures provide elements critical for the development of a statewide coordinated system for infants and toddlers identified with hearing impairment.
The Department will identify and engage persons with expertise in infant hearing impairment to work with the Early Intervention Coordinating Council (EICC) and its committees at the state and local level. EIP program components which are of particular importance for the Newborn Hearing Screening Program are the child find mandates; the provision of multidisciplinary evaluations and the development of Individualized Family Service Plans (IFSPs) and the role of county based "Early Intervention Officials (EIOs) in ensuring that services are provided. In addition, the Kids Integrated Data System (KIDS), which provides information on type and level of service provided to children enrolled in Early Intervention, will be enhanced to include information specific to infants with hearing impairment being tracked as part of the Newborn Hearing Screening Program. Parent Training and Information Centers which serve Children with Special Health Care needs also provide services to families enrolled in the Early Intervention Program and will be used to enhance information and training to families of infants with hearing impairment.
Early Intervention - Function
The Department will identify a group of professionals and families to (See Section 4.27 for more complete description) work with the EICC to prepare a plan for statewide implementation for newborn hearing screening. Each of the committees of the EICC has a role to play in the implementation of advisory guidance from experts in the field. The Data Committee can provide advice and input into data elements on hearing impairment and how these can be modified in the next version of KIDS. The revision of the KIDS system is expected to begin in 2000. The Training Committee will recommend procedures for the needs assessment for audiology. The Quality Improvement Committee will incorporate advice on mechanisms to assess the effectiveness and quality of screening, tracking and intervention services. The Parent Involvement Committee will be asked to address family issues, including the development of educational materials for families and structures for the inclusion of families in policy development for the program. The structure and list of current members of the EICC and its committees is included in Appendix----
Early Intervention - Child Find?
In New York State, the single point of entry into the EIP is through each county’s Early Intervention Official (EIO). The EIO is charged with ensuring the provision of service to infants eligible for the EIP. One of the mandates important for screening and tracking of infants with hearing impairment is the child-find mandates of the EI system including I-CHAP. The primary focus of I-CHAP for 1999-2000 is to ensure children are engaged in primary health care where they will receive developmental surveillance and screening and referral to the Early Intervention Program as appropriate. I-CHAP nurses based in county health departments are now charged with determining the health insurance status of children; assisting families in enrolling in Medicaid or Child Health Plus; and ensuring that children are engaged in a medical home and receiving ongoing developmental surveillance from their primary care provider. In preparation for the conduct of the NYS Newborn Hearing Demonstration Program, guidance was provided to Early Intervention Officials to: 1.) Develop procedures to coordinate follow-up of infants who require a second stage hearing screening; 2.) Develop mechanisms to involve I-CHAP in locating families lost to follow-up for an outpatient rescreen; 3.) Develop procedures for referral to EI for all babies who fail the second stage screen; 4.) Develop mechanisms for the appropriate release of information among providers to assure the proper referral and service provision with infants. (See Appendix 4 for the direction provided to county Early Intervention Officials on assistance to hospitals in locating and helping to return families whose infants are in need of followup hearing screening and/or diagnosis.
Assessment and Intervention
The Early Intervention Program provides a multidisciplinary evaluation for all infants referred to the program for service. The provision of this assessment, free of charge to families, ensures that infants at risk of, or with suspected hearing impairment, will receive adequate audiologic evaluation as part of the multidisciplinary evaluation. Infants identified with hearing impairment (and other developmental delays as defined) will receive an Individualized Family Service Plan (IFSP) which defines amount and intensity of service provision. The IFSP is developed in conjunction with parent input.
System Data
Another opportunity for linkage with EI rests in the KIDS data system. This system tracks service provision for infants and toddlers enrolled in EI Although this system will not stand alone as a tracking system for infants with hearing impairment, it can provide a wealth of data on service provision for these infants. The KIDS system will be revised during the next year, an opportune time to enhance data elements for infants with hearing impairment.
Early Intervention Family Initiatives
The Early Intervention Program has demonstrated commitment to providing family centered early intervention services, improving and refining the early intervention system for families, and promoting parent involvement at all levels of the Early Intervention Program. In March, 1999, JUST KIDS, an Early Childhood Learning Center, was awarded a contract to fund the services of Margaret Sampson as Family Initiatives Coordinator for the New York State Early Intervention Program. The purpose of this project is to collaborate with the Department to coordinate the development and implementation of a variety of family initiatives for the Early Intervention Program.
Among the family initiatives projects underway in the first contract year are: 1) Conduct a Regional Family Forum, 2) Conduct the Early Intervention Partners Training Project and 3) Development of Focus on Families. Six Regional Family Forums have been completed throughout the state. The purpose of these was to provide an opportunity for information exchange and discussion with parents about ways to improve the Early Intervention Program. The Early Intervention Partners Training Project is a special leadership training program designed for parents of infants and toddlers with disabilities involved in the New York State Early Intervention Program. This training initiative targets parents of children in the Early Intervention Program and parent members of Local Early Intervention Coordinating Councils and is held on a regional basis across the state. Focus on Families is an information bulletin for families of children in the Early Intervention Program and is produced two times annually. The general purpose of Focus on Families is to provide information to parents of young children with disabilities on topics of unique interest to them, including emergent clinical and policy issues, training opportunities and materials and supportive resources.
The activities for the second contract year include the following:
Development of a family resource directory, production of a technical assistance document to assist municipalities in enhancing family participation in municipal early intervention activities, production of an orientation manual for parents of children in the Early Intervention Program and development of a website specifically for early intervention families. These projects afford numerous opportunities for information dissemination and exchange for families of children with hearing impairments.
Parent Involvement
Critical linkage to parent networks is provided through six regional offices of "Parent to Parent of New York State" (a parent organization providing peer supports to families across the state) and three parent training and information centers. These structures assist families of CSHCN, including families of infants and toddlers enrolled in the Early Intervention Program. The Department also employs a parent (R. Walden) of a child with special needs as a "Family Specialist to the Children with Special Health Care Needs Program. The position is responsible for the development of leadership skills for families whose children have special health care needs. The role serves as a liaison to Family Voices. Together, the Family Specialist and the network of parent advocacy groups across the state will be used to identify and engage hearing impairment-specific peer networks to engage in planning and implementation of the system of screening, follow-up and intervention.
Needs Assessment
Needs Assessment - CSHCN
The Department has experience in developing and conducting needs assessments for special populations and also in using advisory groups to assess system structure and capacity. In NYS, the portion of federal funds allocated to CSHCN is used to fund infrastructure development and implementation of workgroup recommendations. CSHCN in some counties funds the Diagnosis and Evaluation Program which reimburses specialty providers who diagnose CSHCN who are uninsured or underinsured. A Federal Special Projects of Regional and Nation Significance (SPRANS) grant provides funds for training activities to enhance collaboration between families of CSHCN and professionals and to promote systems change at the community level. A federal MCHIP grant supported three community-based needs assessment initiatives. A second MCHIP grants supported a project that is assessing, planning, implementing and evaluating policies and guidelines for the care and treatment of children with asthma, spina bifida and sickle cell disease who are enrolled in managed care plans. These activities document the Departments’ beneficial to the conduct of needs assessments for children with hearing impairment.
At the state level, guidance and technical assistance are being provided to local health departments to identify and report information about CSHCN, engage families as partners in policy development and training and use of funds to fill service gaps. The Department is preparing to participate in the conduct of an MCBH needs assessment survey in partnership with the National Center for Health Statistics (NCHS).
The Department has convened a working group with representatives from the Office of Medicaid Management, the Office of Managed Care, representatives from Child Health Plus and the Division of Family and Local Health to discuss gaps in service created by variations in eligibility and health service coverage among the various payers for health services for children, especially children with special health care needs. This working group will provide an excellent forum for discussion of system needs for children with hearing-impairment.
4.2.6.2 Needs Assessment - Newborn Hearing Screening
In addition to generic system and health insurance coverage needs assessments, a series of steps are required to plan adequately for the implementation of universal newborn hearing screening on a statewide basis. To date, no specific needs assessments have occurred in preparation for universal newborn hearing screening. However, the recent passage of the NYS Newborn Hearing legislation provides the impetus for the Department to move forward at this time.
The legislation stipulates that "providers shall be reimbursed for provision of screening services…" Therefore, in order to implement the legislation, the department will need to identify funding mechanisms and calculate the rates for reimbursement for screening services. Hospitals will be the primary vehicle for newborn hearing screening, outpatient followup and tracking through diagnosis. The Department will seek to ensure that reimbursement rates cover for the costs of screening equipment, personnel for screening where applicable, staff for followup and tracking and costs for data management where applicable. As first steps, discussions will be held with the Office of Medicaid Management, the leadership of the Child Health Plus Program and the Office of Managed Care. Additional funding from a private sector will also be pursued, including but not limited to equipment donations from manufacturers, discounts for large scale equipment purchases, and also loan of equipment from organizations such as the National Center for Hearing Assessment and Management during start up periods.
Concurrent with the development of third party reimbursement mechanisms, the Department will develop regulations under Public Health Law to guide the conduct of quality newborn hearing screening programs. These regulations will address: program supervision; qualification and training of screening staff; standards for assessment of pass/fail criteria; and requirements for tracking and followup of infants post hospital discharge. Lessons learned from the NYS Demonstration Program indicate that hospital programs should be given flexibility to design and implement protocols which best adapt to their individual circumstances, yet are required to meet performance standards for achieving high quality outcomes.
The current Departmental MCH performance measure assessed our baseline universal screening level on the number of newborns in universal screening programs which were part of the NYS Newborn hearing Demonstration Program. As of 1997, eight hospitals with universal newborn hearing screening programs were screening approximately 11% of the births in NYS. Anecdotal information indicates that a growing number of hospitals are initiating universal hearing screening programs in anticipation of the new law. However, a more complete assessment of baseline performance is needed.
With advice from experts and stakeholders in the field, the Department will conduct a survey of current hospital based screening to determine level and extent of screening; method of screening; personnel involved with screening; supervisory and management responsibilities; hospital tracking and referral mechanisms and interface with Early Intervention. The first draft of a hospital-based survey is attached in Appendix 5 and awaits input from an advisory group.
There are 163 hospitals in NYS accounting for 257, 540 births in 1998. In addition to eight regional perinatal centers, an additional 46 level 3 and 4 hospitals with NICUs account for more than 50% of the births in the state and would be likely sites to target for a phase-in of screening programs across the state. The NYS Newborn Hearing Demonstration program documented that regional perinatal centers could conduct highly successful, efficient screening programs. All the hospitals had audiologists on staff to supervise the program, provide training and supervision for screeners; and provide diagnostic assessment and referral. The level 3 and 4 hospitals are more likely to either have an audiologist on staff or have standing or contractual relationships with community based audiologists.
However, even for the regional perinatal centers in the demonstration project, a number of barriers were identified: 1.) significant amount of time required for start up and for on-going data management; 2.) screening; 3.) staff turnover; and 4.) need for training of new personnel. Upstate hospitals identified long travel times for return to the birthing hospital as a barrier for families for both outpatient screening and diagnostic services. For these hospitals, when a referral was made to a local community audiologist, difficulties were experienced in release of information on diagnosis and outcome of referral information back to the referring hospitals. As more hospitals initiate universal screening programs, the problem of travel time back to a perinatal center will decrease for those communities where audiology serves are accessible in the community. For rural communities often lacking in services, return for follow-up may continue to present challenges for the identification and referral of those infants for services. For some of the urban hospitals with increased percentage of families living in poverty, one of the striking problems was difficulty in tracking the families in need of an outpatient screen and/or diagnostics. Findings from the demonstration project indicate that one or two of the upstate hospitals managed to achieve family return rates of 80%, while some of the New York City hospitals serving a larger percentage of families on Medicaid were able to achieve return rates of closer to 40%. Using Medicaid as a proxy for poverty, about 35% of NYS's annual births are to families served by Medicaid.
Even with the assistance of ICHAP, many families were lost to follow-up. Potential solutions include the recognition that dedicated follow-up staff is a required component of the program. These staff can also can learn some of the techniques used by follow-up staff of the metabolic screening program that finds almost 100% of their confirmed positive cases.
4.2.6.2 Needs Assessment for Diagnoses and Amplification
In cooperation with the New York State Speech Language and Hearing Association and ASHA, the Department will determine the availability of audiologists, both hospital and community-based with expertise in infant assessment and diagnosis. A short and long-range plan to provide sufficient professional assessment services in view of the expected increase in demand is a vital component to the needs assessment. Guidelines will be developed for infant audiologic assessment and monitoring (including guidelines for diagnosis and fitting of amplification); protocols for communication with families. This development of these guidelines is described in Section D. Needs Assessment for Intervention
4.2.6.4 Needs Assessment for Intervention
The Department will conduct a needs assessment of existing state and local services which includes a description of the programs available for infants and children with a range of hearing impairments and their families including residential and community based programs; amount of service availability for speech and language therapy including types of intervention approaches offered (auditory verbal, auditory oral, total communication; cued speech; American Sign Language); training in communication. Although some of this information already exists as part of the KIDS system, more detailed information is required on different modalities of intervention services available for parents. This needs assessment will also incorporate information on the extent of service providers outside of the EI system.
The Department’s Early Intervention Program recently completed evidence-based clinical practice guidelines addressing the needs of children with two specific conditions: Clinical Practice Guidelines for Autism/Pervasive Developmental Disorder and Clinical Practice Guidelines for Communication Disorders. The recommendations included in guidance for Communication Disorders established the foundation for a more detailed set of guidelines to be developed specifically for infants and young children with hearing impairments. The EI program will convene an expert panel by September 2000 to develop clinical practice guidelines for young children with hearing impairment. The methodology to be used for the development of these guidelines follows the protocol recommended by the Agency for Health Care Policy and Research (AHCPR). The guidelines will address assessment standards, intervention practices, and training needs for the field as well as practices for inclusion of families as part of the intervention process.
Needs Assessment for Data Systems
The Department recognizes that the development of a state system for tracking and reporting is an essential component to ensure that infants identified through screening are successfully transitioned from in-hospital screening to follow-up screening, diagnostic assessment and enrollment in appropriate intervention. Because NYS is preparing to build its program for universal newborn hearing screening, the Department will devote planning time during the first year to build a statewide data system. We will build a system of core data elements around the Centers for Disease Control’s (CDC) proposed national data set (Appendix 6)
The Department and its panel of advisors will work with the Data Committee of the Early Intervention Coordinating Council (EICC) to explore a number of options comparing two different methodologies: One option is to add core data elements to existing data collection systems. The most likely of these systems include: Perinatal Data System - This system will be inaugurated on a statewide basis in the spring, 2000. It will consist of the Electronic Birth Certificate and related data modules. It will provide risk-adjusted "red flag" indicators of problems in public health or health care delivery. The data system will serve numerous data reported needs, including vital records, birth log, newborn screening and immunization registry. It will also promote use of birth data by the New York state Department of Health and its local partners (hospitals, local health departments and perinatal networks) allowing analysis of birth outcomes at several levels—within hospitals, in integrated health care systems and community-wide. The Perinatal Data system will be an Internet-based system. Hospitals will report data via a secure Internet site with confidentiality protected by passwords and encryption. Access to the data will be controlled through the same Internet site. Different kinds of users will have different levels of access to the data. They will be able to do basic analyses on-line or in some cases, download data for more complex analysis. Preliminary discussions with representatives of the Bureau of Women's Health indicate that hearing screening data elements could easily be added to this data system. (Perinatal data system elements can be found in Appendix 7) The Department is also on the verge of developing Internet based software for various components making up a Child Health Data Set. The potential exists to include hearing screening as part of this integrated Child Health Data Set. We envision that this component of the system may allow non-hospital based community providers to report infant and child hearing impairment data. (A more complete description is detailed in Appendix 8) Another potential system under consideration is the newborn metabolic screening system. The potential advantages of this system is the experience with follow-up and tracking of infants with confirmed positive blood screens into care in concert with primary care physicians. This is also timely for inclusion of enhanced hearing data elements into the Department’s Early Intervention tracking system known as KIDS (Kids Integrated Data System). This system, serving the entire early intervention system, is planned for revision beginning in the year Enhancement of this system with more specific data on hearing impairment is planned, regardless of which major vehicle is selected by the data committee to serve as the Departments vehicle for newborn hearing screening tracking. Alternatively, the Department may elect to purchase existing software for statewide data summary such as HiTrack (commercial software available through NCHAM which provides for automatic linkage of screening results with a package of follow-up supports and tracking options) or Oz (commercial tracking software linked to screening currently in wide use in Texas) system, or other commercially available packages that provide for summarization of data from multiple sites. During the planning phase of this grant, the Department will explore the above options and select the optimal system.
Collaboration and Coordination
The Department convened a Workgroup on Newborn Hearing Screening in 1994. The Workgroup prepared a series of recommendations to the Commissioner on moving New York State toward universal newborn hearing screening. Many of the members of the 1994 Workgroup remain committed and available given the recent passage of the NYS Newborn Hearing Legislation. The Workgroup included most of constituencies recommended by a list of the original members is attached in Appendix 9. It included representatives from the New York State Speech, Language and Hearing Association: the League for the Hard of Hearing; the Alexander Graham Bell Foundation; NYS Academy of Pediatrics and Parents were represented on the original workgroup, who have children with hearing impairment and one who spoke on behalf of the a regional parent organization for children with hearing impairment. We will augment this parent involvement by working with Ruth Walden, the Department’s family specialist for children with special health care needs to reach out to the parent groups such as Family Voices and to the Parent Training and Information Centers to incorporate additional families of children with hearing impairment in the planning and implementation of the new system. This list will be enhanced to included the Hospital Association of New York State, the Greater New York Hospital and the expertise from this group will be coordinated with the Governor-appointed Early Intervention Coordinating Council and its four standing committees which includes representatives from the major state agencies the programs affecting infants and children with disabilities as well advocates and representatives from the private sector, as well as parents of children with disabilities. Within the Department, program staff will work closely with the Office of Managed Care, the Office of Medicaid Management and representatives of Child Health Plus to ensure that reimbursement systems are responsive to hospital and service provider needs. As noted previously, extensive collaboration will occur with the Bureaus and Divisions within the Department to assure data system development as well as service system integration.
4.2.8 Goals and Objectives
Goal: By 2004, screen 75% of newborns in New York State
Objective1. By 2001, develop an action plan for the phase-in of universal newborn hearing screening over a three-year period.
Activity 1.1 By June 2000, conduct a survey to determine the current number of hospital-based screening programs in NYS using the NCHAM screening survey as a guideline.
Activity 1.2 By March 2001, conduct a needs assessment for diagnostic, amplification and intervention services.
Activity 1.3 By June, 2000, identify and engage persons including parents, with expertise related to infant hearing impairment to provide advice on universal newborn hearing screening in NYS.
Activity 1.4 By December 2000, develop regulations for implementing the NYS legislation for universal newborn hearing screening.
Activity 1.5 By December 2000, recommend funding streams to reimburse hospital providers for screening, tracking and follow-up activities.
Activity 1.6 By June 2000, target hospitals with NICU’s with 20 or more births per year as the first sits for a phased-in implementation strategy for universal newborn hearing screening.
Objective 2. By 2002, implement a statewide data tracking system for universal newborn hearing screening.
Activity 2.1 By June, 2000, identify current DOH data systems and software packages and their related costs for feasibility of serving as a statewide tracking system.
Activity 2.2 By December, 2000, develop recommendations on the data elements and data system to be used to monitor a statewide system of universal newborn hearing screening.
Activity 2.3 By December, 2000, develop recommendations for hospital based reporting to the Department of Health.
Activity 2.4 By January, 2002, test and modify the data system to infringe timely, accurate reporting of screening following and intervention data.
Activity 2.5 By January, 2001, develop recommendations for reporting of hearing screening for non-hospital births including families who have moved into the state.
Objective 3. By 2002, develop clinical practice guidelines for infant hearing impairment and include standards for assessment and intervention.
Activity 3.1 By September, 2000, identify and convene a clinical review panel to develop clinical practice guidelines.
Activity 3.2 By June, 2001, conduct four regional training programs for providers covering the basics of screening, tracking, follow-up and anticipated data reporting requirements.?
Objective 4. By June, 2001, develop educational material for parents of children with hearing impairment.
Activity 4.1 By June, 2001, incorporate information about services for families affected by hearing impairment in parent training options available through the early intervention system and parent resource centers.
Objective 5. Evaluate the effectiveness of the universal newborn hearing screening intervention.
Activity 5.1 Analyze results of survey to assess extent of newborn screening currently underway in New York State. (Year 2).
Activity 5.2 Pilot epidemiological survey tool to determine prevalence and severity of hearing impairment among infants in New York State (Year 3).
Required Resources
This proposal requests 1.5 FTE, a full time project coordinator, and a half time research scientist position responsible for the data system implementation. The project coordinator will be responsible for overall project activities including providing staff linkage to the advisory groups; responsible for development of the statewide plan and its implementation; directing development of needs assessments and conveying results to appropriate policy administrators and constituents; coordinating activities with the Early Intervention Program at both the state and regional levels as well as overseeing the development of regional trainings and educational materials. The research scientist will be responsible for data system development, including linkage to existing systems and linkage to hospital based reporting software; ongoing assessment of data quality; providing technical assistance to hospitals for data reporting and management; and for the provision of regular statistical reports of the status of newborn hearing screening and intervention in the state.
Neither of these positions is available through other sources in the Department. Both are critical to assure the successful completion of stated objectives and the
accomplishment of activities related to those objectives.
Staff travel costs are requested for both positions. In-state travel will be needed for the provision of technical assistance and coordination throughout the state. One-out-of state trip is requested for the two positions to assist with information sharing at the national level.
Regional training costs are requested to facilitate outreach to hospital providers. The curriculum developed for the NYS Teaching Day on Newborn Hearing Screening will be modified as needed for presentation during the project period. Faculty from the demonstration project is available to provide the training, with requested support for their travel and per diem costs. Regional trainings for parents will also be developed in consultation with parents of children with hearing impairment and offered throughout the state.
Funds are also requested for translation services for educational materials for parents. Material development will occur in consultation with the parents of children with hearing impairments. Although the Department will contribute the technical resources of its artists and production department for the development and printing of educational materials, outside consultants must be secured to provide translation services for the multitude of languages in use in NYS. Translation is requested for the three most frequently used languages, Spanish, Mandarin Chinese and Haitian French.
Project Methodology
The augmentation of existing structures and the development of a plan will take place in Year 1.
The program coordinator will draft regulations for program implementation as established by the New York State newborn hearing legislation. The legislation is quiet on the details of implementation however, and the development of regulation will need to be undertaken as a collaborative venture with the enhanced participation in the EICC. Proposed regulations are posted for public comment for a three month period prior to becoming part of the public health law. As such, the program coordinator will use the opportunity of the public comment period to gather input a wide array of constituencies who may not have been able to participate actively in the development of the regulations.
The program coordinator will participate in departmental meetings concerning potential funding mechanisms and reimbursement rates for newborn hearing screening. Meetings are planned with Medicaid and the Office of Managed Care as first steps. Given the language of the legislation, it is clear that a majority of hospitals may not initiate universal newborn hearing screening programs until they are assured that they will be reimbursed for their services.
The coordinator will tap the national resources such as NCHAM and the Marion Downs Center for model protocols for needs assessments. These models will be tailored to the needs of NYS with the advice of the advisors.
The first needs assessments will be gathering the baseline on current screening practices in hospitals in NYS (Year 1). The next needs assessments will address the availability of audiologists and early intervention specialists with expertise in the various modalities of treatment for deaf and hearing impaired infants. The conduct of the needs assessment and the development of recommended evidence-based standards of practice for intervention will take place in conjunction with the work of the consensus panel for Clinical Practice Guidelines for Infant Hearing. This work will be started in 2000 and run through 2001. The data coordinator will work the staff engaged with the data sets mentioned in Section 4.2.6.5 to begin the process of identifying the most feasible structures for inclusion of hearing data elements, ensure that the databases can be linked through the Integrated Child Health Information System and develop information for hospital and community providers for reporting. A minimal data set will be constructed around the core data elements proposed by CDC for the national data set. (Appendix 6). The data coordinator will with work with EICC Data Committee to develop appropriate data elements for inclusion in the new version of KIDS.
The program coordinator will develop a training module, based on the Teaching Day for Newborn Hearing Screening sponsored by the Department in 1997. The orientation will be held in two regions of the states and be designed to assist hospital providers to initiate universal screening programs in their hospitals. Audiologists and physicians involved in the NYS Demonstration Program have offered to serve as faculty for this endeavor, providing information on "how to" and "lessons learned."
The program coordinator will work with EI staff and family consumer members of advocacy groups to design parent information materials. Models available from North Carolina will provide an excellent starting place for educational materials development. Some of the information will be incorporated into existing EI brochures as they are ready for revision, while others will be produced as stand-alone documents.
4.2.11 PLAN FOR EVALUATION
Objective 1. By 2001, develop an action plan for the phase-in of universal newborn hearing screening over a three-year period.
Evaluation Measures
1a) The number of hospitals currently conducting newborn hearing screening will be determined. Availability and need for diagnostic, amplification, and intervention services will be determined (9 months)
1b) Advisory Group members identified and convened. (6 months)
1c) A draft of regulations pertaining to implementation of New York State’s legislation for universal newborn hearing screening will be completed and potential sources of funding will be identified (12 months)
Objective 2. By 2002, implement a statewide data tracking system for universal newborn hearing screening.
Evaluation Measure:
Data collection items from the Center for Disease Control and Prevention’s proposed Early Hearing Detection and Intervention National Database (see appendix ___) will be integrated into existing information gathering systems related to newborns, infants and toddlers. A pilot hospital generated report will be produced (12 months).
Objective 3. By 2002, develop clinical practice guidelines and education materials for providers and parents regarding policies and available services and that include standards for assessment and intervention.
Evaluation Measure:
Clinical practice guidelines for newborn hearing impairment will be drafted for review. Educational materials will be produced regarding New York State policy and the system of services available to families of affected children (18 months).
Activity 4.1 By June, 2001, develop educational materials for all new and for parents of children with hearing impairments.
Objective 4. Educate families about the benefits of newborn hearing screening. Educate families of infants with hearing impairment about their options for early intervention.
Evaluation Measure:
A pre-post assessment of parents exposed to the educational material regarding newborn hearing impairment will be conducted to determine impact on knowledge, attitudes and behavior (Year 3).
Objective 5. Evaluate the effectiveness of the universal newborn hearing screening intervention.
Evaluation Measures:
The following questions will be answered through a data reporting system generated by participating hospitals and/or a follow-up survey of parents with children diagnosed with hearing impairments.
What percentage of births in New York State are screened? Was the desired goal of 75% participation rate reached?
Among participating hospitals, what were the catch rate/per live births for number of infants screened prior to discharge? Was the goal of 90% obtained?
Of those infants failing the initial hospital-based screen, but also that a confirmatory screening took place?
Of those who fail the second screen, what percentage (of the desired 100%) get referred to the Early Intervention Program for assessment, diagnosis and follow-up?
What percentages of diagnosed hearing impaired infants actually receive services by 6 months of age?
What is the array of payment mechanisms for services including screening, diagnosis, assessment & treatment?
What is the average/medium age of diagnosis of hearing loss?
What is the prevalence and degree of impairment among New York State newborns fitted with hearing aids? How many per calendar year are diagnosed with permanent congenital hearing loss.
Are parents of affected children satisfied with the service delivery system?
How much does universal newborn screening cost?