National Goals and Program Objectives For the EHDI Tracking and Surveillance System

CDC worked with State participants and representatives from other federal and national agencies to develop the Program Objectives and Performance Indicators. Numerous sources were used such to develop these objectives and indicators, such state guidelines, JCIH Position Statement and the AAP position statement. It is the responsibility of the States to put these objectives into a feasible time line.

Goal 1. All newborns will be screened for hearing loss before 1 month of age, preferably before hospital discharge.

Program Objectives Performance Indicators

• 1.1 Universal screening. 100% of birthing facilities will have a universal newborn and infant hearing screening (UNHS)program that screen all newborns. Small hospitals that do no screen newborns will refer infants to a screening program.
  1. Number/percent of birthing hospital in the state that screen at least 98% of infants before discharge.
     
  2. Number/percent of small hospitals that do not screen but have plan for referral to a screening program including designation of responsible staff positions(s) and timeline.
     
  3. Number/percent of infants screened before hospital discharge.
     
  4. Number/percent of infants screened before 1 month of age.
     
  5. Number/percent of infants whose families refuse screening
     
     
• 1.2 Information on newborn hearing and the screening process. All birthing facilities will have linguistically appropriate and culturally sensitive brochures/materials to inform parent(s) or guardians of newborns about the newborn hearing and screening process before the infant is screened.
  1. Number/percent of pregnant women who receive EHDI information before delivery
     
  2. Number/percent of new parents who receive EHDI information in the hospital at the time of delivery.
     
  3. Number/percent of hospitals that provide information packets in Spanish and/or other languages where the minority is 5% or more.
     
     
• 1.3 Demographic data. All hospitals will collect demographic data such as race/ethnicity, educational level of the mother, and type of insurance covered before hospital discharge.
  1. Number/percent of infants in each race/ethnic group
     
  2. Percent of infants whose mothers are in each category of level of education.
     
  3. Number/percent of mothers in each insurance category
     
     
• 1.4 Out of hospital births. States will have a mechanism to assure that infants not born in birthing hospitals will receive a hearing screening.
  1. Number/percent of infants born out of hospital.
     
  2. Number/percent of infants born out of the hospital that receive a hearing screening before one month of age.
     
     
• 1.5 Financial barriers. Each state will develop a system to reduce/eliminate financial barriers to screening.
  
  1. Published guidelines to reduce financial barriers that include information to parent on how to receive financial help or free screening and/or diagnostic services.
     
  2. Number of hospitals or other relevant organizations to which the guidelines were distributed, including designation of responsible staff and timelines.
     
     
• 1.6 Reporting. Results of the hearing screening will be provided to all parents and to the infant’s primary care provider (PCP).
  1. Forms and stated protocol for providing screening results to parents and PCP are available.
     
     
• 1.7 Linkage and Referral to Audiologic follow-up. Each state will identify a linkage system to assure that 98% of infants who do not pass the hearing screening will have appropriate referral for diagnostic evaluation.
  1. Number/percent of infants who do not pass the initial screen (inpatient or outpatient)
     
  2. Number/percent of infants who do not pass the initial screen and are referred for diagnostic audiological evaluation.
     
     
• 1.8 Education/Training. Hospitals or EHDI program will will have a training plan for all service providers including screeners (inpatient and outpatient), nurses, physicians.
  1. Yearly or semi-annual list of training sessions completed (or planned) for screeners, nurses, and physicians.
     
     
• 1.9 Screening protocols. Hospitals will have a written hearing screening protocol which include standard policies, procedure for screening, and appropriate forms.
  1. Copy of hearing screening protocol.
     

Goal 2. All infants who screen positive will have an diagnostic audiologic evaluation before 3 months of age

Program Objectives Performance Indicators

• 2.1Audiologic evaluation. Audiologists will administer a comprehensive audiologic evaluation to confirm infant/child hearing loss including type, configuration, and degree to 80% of infants who screen positive for hearing loss before 3 months of age.
  1. Number/percent of infants who screened positive, received a comprehensive audiologic evaluation before 3 months of age.
     
  2. Number/percent of infants who have bilateral or unilateral hearing loss.
     
  3. Number/percent of infants with permanent conductive, sensorineural or auditory dys-synchronus hearing loss.
     
  4. Number/percent of infants who have mild, moderate, severe, or profound hearing loss.
     
  5. Number/percent of infants who are referred for audiological evaluation but are lost to follow-up
     
     
• 2.2 Evaluation protocols. Each state will develop and make accessible, protocol/guidelines for appropriate diagnostic audiologic evaluation and recommendations for management (e.g. amplification, rehabilitation). These guidelines will be developed with state and local audiologists’ input and based on current national guidelines
  
  1. Documented list of acceptable measures to be included in the test battery for the identification of hearing loss and minimum frequency of evaluation to monitor the hearing sensitivity of all infants/children identified with hearing loss and all infants/children identified at risk for late-onset, progressive or acquired hearing loss. infants and children of various ages.
     
  2. Copy of diagnostic management (e.g. amplification, rehabilitation) protocol that is based on current national guidelines (JCIH, ASHA).
     
  3. Number/percent of audiologists who have and follow state protocols when conducting audiologic evaluations for infants and children.
     
  4. Copy of diagnostic management protocol (e.g. amplification, rehabilitation) that is based on current national guidelines (JCIH, ASHA)
     
     
• 2.3 List of diagnostic audiologic providers. Each state will have a current resource list that identifies diagnostic centers and/or pediatric audiologists who are competent in administering diagnostic audiologic evaluations for infants, according to the protocol/guidelines.
  1. List of diagnostic centers and/or audiologists.
     
  2. Number of centers/audiologists that have appropriate equipment for diagnostic evaluation of infants.
     
  3. Number of hospitals or referral personnel that have list of diagnostic centers or audiologists.
     
     
• 2.4 Linkage to appropriate follow-up. Each state will identify a linkage system to assure that 98% of families whose infant is identified with a hearing loss will have appropriate referral to medical, audiologic, and intervention services, according to state resources.
  1. Number/percent of infants identified with a hearing loss that are referred to medical specialists, such as otolaryngologists, ophthalmologists, and geneticists.
     
  2. Number/percent of infants with a hearing loss that are referred to early intervention services, including counseling and support services.
     
  3. Number/percent of infants with a hearing loss that are referred to on-going audiological evaluations and services.
     
     
• 2.5 Education/Training for Audiologists. Each state will develop an education/ training plan for audiologists to assure competency in pediatric evaluation, management, and family counceling.
  1. Documented training plan for audiologists.
     
  2. Number of audiologists trained or offered opportunity.
     
     
• 2.6 Education/Training for Other Providers. Each state will develop an education/training plan for primary care providers, public health nurses and others related to the importance and process of audiologic evaluation.
  1. Documented training plan for other providers.
     
  2. Number of professionals trained.
     
     
• 2.6 Information on the audiologic evaluation process. Parents and guardians will be informed in a culturally sensitive and language appropriate manner about the diagnostic audiologic evaluation process and report.
  
  1. Documentation of language appropriate materials and interpreter services to describe audiologic services and reports.
     
  2. Method to distribute these materials
     
  3. Number of materials distributed.
     
     

Goal 3. All infants identified with a hearing loss will be receive appropriate early intervention services before 6 months of age (medical, audiologic, and early intervention).

Program Objectives Performance Indicators

• 3.1 Medical services. All infants identified with a hearing loss will receive appropriate medical services, such as primary care, visual, genetic services, and counseling before 6 months of age.
  1. Number/percent of Part C eligible infants with a hearing loss that received appropriate medical services from primary care, otolaryngologists, ophthalmologists, and geneticists before 6 months of age.
     
     
• 3.2 Early intervention services. Each state will assure that all infants and children with documented hearing loss will receive appropriate early intervention services from Part C or other state approved intervention services. Service coordination will be provided to eligible children.
  1. Number/percent of infants with a hearing loss who are enrolled in an intervention program before 6 months of age
     
  2. Number/percent of infants/children with a hearing loss that receive family support information about early intervention services.
     
  3. Number/percent of eligible infants/children categorized by hearing loss who have a signed IFSP.
     
  4. Number/percent of infants who are loss to follow-up after identification.
     
     
• 3.3Audiologic services. All infants identified with a hearing loss will receive appropriate audiologic services before 6 months of age.
  1. Number/percent for whom documentation of audiologic services received which include communication options, and amplification options if appropriate exists.
     
  2. Documentation of plan for management of each infant's/child's assistive technology which should include, at a minimum, use of probe microphone measures and recommendations for frequency of evaluation.
     
  3. Documentation of protocols/guidelines for management of each infant/child’s aural habilitation/rehabilitation
     
  4. Number/percent of infants fitted with hearing aids before 6 months of age
     
     
• 3.4 Policy statement for stakeholders. Each state will adopt a policy regarding the right of every family to choose the communication modes/methods that is most appropriate for their child.
  1. Written procedural safeguards policy regarding the rights of families when choosing the communication mode that is most appropriate for their child.
     
  2. List of resource people that can be contacted by families to assist them in learning about the various communication options, enabling them to make more informed decisions about what is right for their child.
     
  3. Plan for getting the resource list and the procedural safeguards to each family identified by the newborn hearing screening program.
     
     
• 3.5 Resource guide. All states will develop a comprehensive, family-friendly Resource Guide which will include: material from a variety of sources; a list of relevant web sites; a list of state contact people. The Guide will be available in print as well as on a web site and in major languages used in the state, pending available resources.
  1. Number/percent of parents/guardians of infants with a confirmed hearing loss who reached 6 months of age within the last calendar year who received a copy of the state resource guide.
     
  2. Documentation of resource guides in any language spoken by 5% or more of the population in that state.
     
  3. The state resource guide will include a list of questions for parents to ask in assessing the philosophy and practices of programs they consider for their child.
     
     
• 3.6 Membership of IFSP Team. All families who have a child with identified hearing loss should have an individual on their IFSP team who has knowledge, experience, and expertise with the issues related to deaf and hard of hearing children.
  1. Number of IFSPs which list as members of the infant/child’s IFSP teaman individual with professional preparation and/or professional experience working with deaf/hh children.
     
     
• 3.7 Education/Training. States will provide opportunities to Part C and other intervention services to receive training on specific issues related to deafness and hearing loss.
  1. Documentation of implemented and planned training sessions for Part C and other intervention service providers.
     
     
• 3.8 Quality intervention systems. States shall ensure that high quality early intervention systems are available, including those that meet the needs of diverse populations and children with additional disabilities.
  1. List of intervention services that describe available services for diverse populations.
     
  2. Documentation of services for children with hearing loss who also have other disabilities.
     
     
• 3.9 Recommendations for early intervention providers. States shall develop a set of recommendations for Early Intervention Providers who work with children who are deaf or hard of hearing and their families that include:
  
  • identification of objective sources of information for families to learn about communication options.
    
  • guidelines for monitoring the communication and social skill development of the child with a hearing loss at 6-month intervals.
    
  • identification by each early intervention program of personnel within their staffs who are specialists in deaf and hard of hearing issues
    
  • process for linkage to family-to-family support within the EI system
    
  • list of preschool program options which are particularly prepared to serve children who are deaf or hard of hearing, and inclusion of this information in the preparation of the family for transition at age 3.
  1. Documentation of distributions of a resource guide that presents balanced information on communication options.
     
  2. Documented test scores for communication and social skill development at 6 month intervals.
     
  3. Documentation of annual updated guidelines.
     
  4. Number/percent of families referred to and involved in parent-to-parent support program.
     
     
• 3.10 Parent participation. Each state will assure that 95% of parents/families of children who have a hearing loss have an opportunity to participate in the EHDI system in meaningful ways.
  1. Number of parents involved in their child's program planning, evaluation, or monitoring.
     
  2. Number of parents on the EHDI Advisory Board.
     
     

Goal 4. All infants and children with late onset, progressive or acquired hearing loss will be identified at the earliest possible time.

Program Objectives Performance Indicators

• 4.1Risk factors: Each hospital, audiologist and other providers will identify infants with risk factors for hearing loss and transmit to state.
  1. Number/percent of infants with one or more risk factors.
     
     
• 4.2 Monitoring of at-risk infants. Each State will have a mechanism in place to monitor the hearing status of infants at risk for late onset and progressive hearing loss.
  1. Number/percent of infants with risk factors that are re-screened by 6 months.
     
     
• 4.3 Acquired hearing loss. Each state will have a mechanism in place to identify and provide follow-up services for infants and children with acquired hearing loss.
  1. Number/percent of infants/children identified with acquired hearing loss
     
     

Goal 5. All infants with hearing loss will have a medical home.

Program Objectives Performance Indicators

• 5. 1 Medical Home. Each infant with a confirmed hearing loss will have an identified primary care provider before 3 months of age.
  1. Number/percent of infant records that include name of the infant’s primary care provider.
     
  2. Documentation that the results of the infant’s audiologic evaluation were sent to their primary care provider.
     
  3. Documentation of written definition of “Medical Home” that includes all components of the AAP definition.
     
  4. Number of pediatricians, family physicians, nurse practitioners, midwives, etc. that provide primary care for infants/children with hearing loss.
     
     
• 5.2 Collaboration with Early Intervention. Each medical home will collaborate with the early intervention system and the family to develop a plan to connect families to advocacy groups, parent support networks, and parent to parent support.
  1. Documentation in each family plan or IFSP of collaboration between the early intervention systems and the medical home.
     
     
• 5.3 Unbiased information. Each state will develop resources that can be shared with the medical homes and families to provide unbiased information.
  1. Documentation that Resource Guide is provided to physicians and other primary care providers describing unbiased information regarding early intervention strategies.
     
     
• 5.4 Education. States will develop a plan, with parent partnership, to provide education about the State EHDI Progam to the medical homes that will include the components of the AAP definition.
  1. Documentation of plan to provide information on EHDI program to each infant/child’s medical home.
     
  2. Number of each type of PCP (physician, midwife, etc.) that receive written information and/or attend a session about the EHDI Program
     
  3. List of PCPs working with State EHDI program
     
     
• 5.5 Parent input. Each state will have a mechanism for obtaining parent feedback and including parents in the process of development and evaluation processes for the medical home.
  
  1. Number of parents participating in the development and evaluation of the medical home.
     
  2. Results of survey or other mechanism to obtain parent feedback
     
     
• 5.6 Continuous care. Each state will have a mechanism for identifying and tracking the infant’s primary care provider at key intervals, regardless of insurance status.
  1. Number/percent of infants with documented medical home.
     
  2. Updated documentation of who the primary care provider is at birth, 1, 3, 6, 12 months and yearly.
     
     

Goal 6. Every state will have a complete EHDI Tracking and Surveillance System that will minimize loss to follow-up.

Program Objectives Performance Indicators

• 6.1 Comprehensive system. Each state will have a computerized system that contains up-to-date information on hearing screening for every infant, evaluation for all infants/children who do not pass the screening, and interventions for every infant and child residing in the state from birth through 5 years of age that are identified with a hearing loss.
  1. Written description of computerized system
     
  2. Printouts and reports of screening, evaluation, and intervention data
     
     
• 6.2 Advisory Committee. Each state will convene an advisory committee to provide guidance on the EHDI system. The committee should include professionals, individuals with hearing loss, families with children who have permanent hearing loss, and others to provide guidance on the development and evaluation of the EHDI system.
  1. List of Advisory Committee members
     
  2. Minutes of Advisory Meeting
     
     
• 6.3 Policies and procedures. Each state will have written policies and procedures regarding operation of the EHDI Tracking and Surveillance System.
  1. Documentation of Policies and procedures Manual
     
     
• 6.4 Privacy and confidentiality. Each state will develop policies, procedures, and informed consent requirements regarding privacy and confidentiality of data in the EHDI Tracking and Surveillance System
  1. Documentation of policy and procedures on informed consent requirements
     
     
• 6.5 Include all births. Each state will ensure that all live births in the state are included in the state EHDI Tracking and Surveillance System by matching with the state’s birth certificates registry.
  1. Number/percent of infants born
     
  2. Number/percent of infants screened
     
  3. Documentation of number/percent of matches with vital records.
     
     
• 6.6 Risk factors for hearing loss. The state EHDI Tracking and Surveillance System will ascertain risk factors for hearing loss for every infant by linkage with other state data systems, such as hospital records, birth certificates, birth defects, metabolic screening, immunizations, etc.
  1. Number/percent of infants with risk factors
     
  2. Number and type of risk factors for each infant
     
     
• 6.7 Feedback from families. The state EHDI program will obtain feedback from parents on the EHDI process
  1. Survey of parent concerns and issues.
     
  2. Results of parent survey
     
     
• 6.8 Core data items. The state EHDI Tracking and Surveillance System will include core data items for initial screening, repeat screening, diagnostic evaluation and intervention
  1. List of core data items included in state system
     
     
• 6.9 Newborn hearing screening results. The state EHDI Tracking and Surveillance System will capture all hearing screening results at birthing hospital within [a week] after discharge or transfer
  1. Report on number/percent of infants screened which includes: results for each ear, technology used, age at screening
     
     
• 6.9 Reporting mechanism for health care providers. Each state will provide a mechanism for hospitals, audiologists and other health care providers to report hearing screening results, evaluations and interventions.
  1. Number of health care providers that have protocols for reporting hearing screening results, evaluations and interventions
     
  2. Number of health care providers that report results to the state
     
     
• 6.10 Identifying children who need screening and follow-up. The state EHDI Tracking and Surveillance System will be able to identify, on a [weekly] basis, all infants and children who need initial hearing screening, repeat testing, evaluation, follow-up or intervention.
  1. Number/percent of infants/children who need follow-up.
     
  2. Number/percent of infants/children who receive follow-up
     
     
• 6.11 Access to information. The state EHDI Tracking and Surveillance System will allow case managers and authorized health care providers to access relevant information about an infants and children.
  1. Written plan to allow access for case managers and authorized health care providers to relevant information
     
     
• 6.12 Monitoring and Evaluation. Each state EHDI program will develop a program evaluation plan in collaboration with the program Advisory Committee, to ensure accomplishment of national and state program goals and objectives.
  1. Annual evaluation report that includes accomplishments of national and state program goals and objectives.
     
     
• 6.13 Surveillance of Follow-up Services. Each state will assure that 95% of infants and children with hearing loss will receive on-going appropriate follow-up services.
  1. Number/percent of infants with a hearing loss that received appropriate on-going medical services from primary care, otolaryngologists, ophthalmologists, and geneticists.
     
  2. Number/percent of infants with cochlear implants
     
  3. Age at implant
     
  4. Number/percent of infants/children using each mode of communication, e.g. sign language, oral, cued speech at 6 month intervals.
     
  5. Number/percent of infants achieving communication and social skills scores commensurate with their cognitive abilities age at 1, 3, 5, and 7 years of age.
     
  6. Number/percent of infants with hearing aids that receive follow-up visits at 2-month intervals until age 2 and 3-month intervals until age 3.