Focused Monitoring for Newborn Hearing Screening Programs EDHI Conference 2004 Linda Pippins, MCD Amy Fass, MPH Christy Fontenot, MS

Focused Monitoring Concept utilized by the U.S. Dept of Education, Office of Special Education Programs (OSEP) to monitor priorities of IDEA

Focused Monitoring Applicable to EDHI Programs: looks at a wide range of priorities and benchmarks of Part B and Part C state programs but focuses attention on a small number of priorities

Selected Principles of a Focused Monitoring System A limited number of priorities are chosen by a diverse group of stakeholders A limited number of priorities are chosen by a diverse group of stakeholders A limited number of indicators are identified within each priority area A limited number of indicators are identified within each priority area The system is data and information-based and is verifiable The system is data and information-based and is verifiable EDHI programs can provide supports, target TA, impose sanctions EDHI programs can provide supports, target TA, impose sanctions

Selected Principles of a Focused Monitoring System State EDHI program can publish an annual ranking of hospitals based on data State EDHI program can publish an annual ranking of hospitals based on data The system can include clear known triggers for TA or sanctions The system can include clear known triggers for TA or sanctions Limited resources are allocated to the areas of greatest need Limited resources are allocated to the areas of greatest need Monitoring strategy is systematic and can be progressive Monitoring strategy is systematic and can be progressive

For IDEA: Priorities are the key elements that if fully implemented would make a significant difference for children with disabilities. Priorities were selected by a stakeholder group.

IDEA Priorities = JCIH Principles

OSEP established levels of expected state performance JCIH established benchmarks for EDHI programs

OSEP classifies states as: Category 1: meeting or exceeding benchmark Category 1: meeting or exceeding benchmark Category 2: below benchmark, but should be able to meet benchmark relatively quickly Category 2: below benchmark, but should be able to meet benchmark relatively quickly Category 3: below benchmark; needs more intensive intervention to reach benchmark Category 3: below benchmark; needs more intensive intervention to reach benchmark Category 4: unacceptable (receive intensive OSEP intervention) Category 4: unacceptable (receive intensive OSEP intervention)

Examples of Priorities and Indicators: Part C Priority 1: Effective State Supervision-Child Find: All eligible infants and toddlers are appropriately identified Priority 1: Effective State Supervision-Child Find: All eligible infants and toddlers are appropriately identified  Indicator: Percentage of children identified as compared to the general population of the same age  Indicator: Percentage of over or under representation of total eligible population disaggregated by race and ethnicity

Examples of Priorities and Indicators: Part C Priority 4: Inclusion of infants and toddlers in typical community and school settings with their nondisabled peers with needed supports. Priority 4: Inclusion of infants and toddlers in typical community and school settings with their nondisabled peers with needed supports.  Percentage of infants and toddlers whose primary service location is home or settings designed for typical children, disaggregated by race and ethnicity

Examples of JCIH Principles and Quality Indicators Principle 1: All infants have access to hearing screening using a physiologic measure Principle 1: All infants have access to hearing screening using a physiologic measure  Indicator 1: Percentage of infants screened during the birth admission  Indicator 2: Percentage of infants screened before 1 month of age

Examples of JCIH Principles and Quality Indicators Principle 2: All infants who do not pass the birth admission screen and any subsequent rescreening begin appropriate audiologic and medical evaluations to confirm the presence of hearing loss before 3 months of age Principle 2: All infants who do not pass the birth admission screen and any subsequent rescreening begin appropriate audiologic and medical evaluations to confirm the presence of hearing loss before 3 months of age  Indicator 2: Percentage of infants whose audiologic and medical evaluations are obtained before an infant is 3 months of age

Louisiana Implementation Examined the principles and established priorities Examined the principles and established priorities Ranked hospitals and provided reports Ranked hospitals and provided reports Provided targeted technical assistance Provided targeted technical assistance

Data collection in Louisiana 59 hospitals are using the electronic birth certificate (EBC) to transmit birth certificate and hearing screening information. 59 hospitals are using the electronic birth certificate (EBC) to transmit birth certificate and hearing screening information. Seven hospitals send screening results on a paper form, which are then entered into the EHDI database and are matched to the birth certificate. Seven hospitals send screening results on a paper form, which are then entered into the EHDI database and are matched to the birth certificate. One hospital uses a computer disk to send screening results, which are downloaded into the EHDI database and are matched to birth certificates. One hospital uses a computer disk to send screening results, which are downloaded into the EHDI database and are matched to birth certificates.

Targeting of Hospitals EHDI staff chose two indicators to begin focused monitoring: EHDI staff chose two indicators to begin focused monitoring:  1. Percentage of infants screened during the birth admission.  2. Percentage of infants who do not pass the birth admission screen.

Targeting of Hospitals Four categories for each indicator: A, B, C and D Four categories for each indicator: A, B, C and D  Indicator 1: A >= 95%, B = 90% %, C = 80% %, D = 95%, B = 90% %, C = 80% %, D < 80%  Indicator 2: A 20%  One additional category added for Indicator 2: Requires Review, for hospitals referring 0% of all infants for further testing.

Before focused monitoring Only 19 out of 68 hospitals were reporting results consistently. Only 19 out of 68 hospitals were reporting results consistently. Multiple problems including: limited knowledge of reporting, lack of knowledge on procedures, lack of communication between medical records and nursery staff, and lack of supervision. Multiple problems including: limited knowledge of reporting, lack of knowledge on procedures, lack of communication between medical records and nursery staff, and lack of supervision. Some hospitals were screening but not reporting results. Some hospitals were screening but not reporting results.

Before focused monitoring Screening rates in all hospitals varied from 18.7% to 100.0%, with an average of 84.7% Screening rates in all hospitals varied from 18.7% to 100.0%, with an average of 84.7% Screening rates in targeted hospitals varied from 18.7% to 77.3%, with an average of 50.4% Screening rates in targeted hospitals varied from 18.7% to 77.3%, with an average of 50.4% Fifteen hospitals received a D for Indicator #1 Fifteen hospitals received a D for Indicator #1

Before focused monitoring Referral rates in all hospitals varied from 0.0% to 48.8%, with an average of 7.1% Referral rates in all hospitals varied from 0.0% to 48.8%, with an average of 7.1% Referral rates in targeted hospitals varied from 20.5% to 48.8%, with an average of 28.1% Referral rates in targeted hospitals varied from 20.5% to 48.8%, with an average of 28.1% Seven hospitals received a D for Indicator #2 Seven hospitals received a D for Indicator #2 Six hospitals reported 0% for this indicator and required additional review. Six hospitals reported 0% for this indicator and required additional review.

Screening Rates before Monitoring

Referral rates before monitoring

After focused monitoring Screening rates in all hospitals varied from 55.4% to 100.0%, with an average of 92.7% Screening rates in all hospitals varied from 55.4% to 100.0%, with an average of 92.7% Screening rates in targeted hospitals varied from 55.4% to 96.8%, with an average of 84.4% Screening rates in targeted hospitals varied from 55.4% to 96.8%, with an average of 84.4% Only three hospitals remained in Category D for Indicator #1 Only three hospitals remained in Category D for Indicator #1

After focused monitoring Referral rates in all hospitals varied from 0.0% to 42.1%, with an average of 6.7% Referral rates in all hospitals varied from 0.0% to 42.1%, with an average of 6.7% Referral rates in targeted hospitals varied from 9.4% to 42.1%, with an average of 20.3% Referral rates in targeted hospitals varied from 9.4% to 42.1%, with an average of 20.3% Only four hospitals remained in Category D for Indicator #2 Only four hospitals remained in Category D for Indicator #2 Three hospitals reported 0% for this indicator and required additional review. Three hospitals reported 0% for this indicator and required additional review.

Screening rates after monitoring

Referral rates after monitoring

On-site focused monitoring in Louisiana hospitals: Preconceived Notions & Discoveries

Pre-conceived notion #1 That all hospital hearing screening programs were currently testing at least all infants with risk factors for hearing loss. (mandated 1994)

Discoveries  Discussed the importance of newborn screening  Discussed the new state law mandating universal screening and issues regarding legal compliance  Reviewed the Louisiana Hearing Screening Guidelines Several hospitals had never tested or were testing at one time but had stopped testing for various reasons. During focused monitoring on-site visits we:

Pre-conceived notion #2 That all birthing hospitals in the state of Louisiana owned appropriate hearing testing equipment.

Discoveries  Discussed specific equipment difficulties and attempted to troubleshoot if within our expertise  Shared the name/contact number for equipment sales representatives servicing their equipment  Discussed alternate sources for new equipment Several of the hospitals had no equipment or non-functioning equipment. During focused monitoring on-site visits we:

Pre-conceived notion #3 That testing personnel could properly operate the hearing testing equipment.

Discoveries  Discovered many technicians were poorly trained or lacked experience  Reviewed the supervisor’s role in training and supervising technician screening including holding in-service training sessions for technicians  Discussed protocols and procedural issues to improve screening pass rate including rescreening and dual technology Many hospitals had hearing screening failure rates over 4%. During focused monitoring on-site visits we :

Pre-conceived notion #4 That all screening programs had supervisors that were either audiologists or physicians trained in infant hearing screening.

Actual situation  Reviewed the rules requiring each screening program to have an audiologist or trained physician as supervisor.  Discussed possible supervisors within the hospital system or in close physical proximity.  Set up meetings between hospital administrators and possible supervisors  Met with new supervisors and helped create protocols and procedures The majority of poorer functioning hospitals had no Hearing Screening Supervisor. During focused monitoring on-site visits we:

Pre-conceived notion #5 That hospitals were accurately reporting screening results on the electronic birth certificate.

Discoveries  Discovered many medical records departments had not been instructed to begin using the hearing screening portion of the EBC  Discussed many common reporting errors  Discussed reporting difficulty with infants not receiving screening within 24 hours of birth when EBC is being filled out (NICU, c-section deliveries, jaundice, etc.) Many hospitals were not using the electronic birth certificate correctly to report results. During focused monitoring on-site visits we:

Pre-conceived notions #6 That each hospital hearing screening program was connected to the proper follow-up system.

Actual situation  Proper referral procedures to include having an audiology appointment prior to discharge  Local and statewide referral sources for ENT/ Audiology / Part C services/ Parent Resources  Parent Pupil Education Program availability for those with confirmed hearing losses  Improving communication with primary care physicians Most hospitals had only one source for referrals and limited knowledge of proper follow-up procedures. During focused monitoring on-site visits we discussed:

Benefits Demonstrated improvements to hospitals and state system Demonstrated improvements to hospitals and state system Stakeholder input into state priorities Stakeholder input into state priorities Structure for systematic evaluation and progressive evaluation of individual hospitals and state program Structure for systematic evaluation and progressive evaluation of individual hospitals and state program Measurable improvements that can be tracked and compared Measurable improvements that can be tracked and compared Focuses limited state resources Focuses limited state resources

Future Plans Annual establishment of priorities by State Advisory Council Annual establishment of priorities by State Advisory Council Consider sanctions for poor performance and rewards for outstanding performance Consider sanctions for poor performance and rewards for outstanding performance Wider distribution of data to increase improvements Wider distribution of data to increase improvements Priorities can be used as extended 5 – 10 year plans for improvements Priorities can be used as extended 5 – 10 year plans for improvements Focus limited resources to give targeted TA and training Focus limited resources to give targeted TA and training