Focused Monitoring for Newborn Hearing

Screening Programs

EDHI Conference 2004EDHI Conference 2004

Linda Pippins, MCDLinda Pippins, MCD

Amy Fass, MPHAmy Fass, MPH

Christy Fontenot, MSChristy Fontenot, MS

Focused Monitoring

Concept utilized by the U.S. Dept of Concept utilized by the U.S. Dept of Education, Office of Special Education, Office of Special

Education Programs (OSEP) to Education Programs (OSEP) to monitor priorities of IDEAmonitor priorities of IDEA

Focused Monitoring

Applicable to EDHI Programs: Applicable to EDHI Programs:

looks at a wide range of priorities and looks at a wide range of priorities and benchmarks of Part B and Part C state benchmarks of Part B and Part C state programs but focuses attention on a programs but focuses attention on a

small number of prioritiessmall number of priorities

Selected Principles of a Focused Monitoring System A limited number of priorities are chosen A limited number of priorities are chosen

by a diverse group of stakeholdersby a diverse group of stakeholders A limited number of indicators are A limited number of indicators are

identified within each priority areaidentified within each priority area The system is data and information-based The system is data and information-based

and is verifiableand is verifiable EDHI programs can provide supports, EDHI programs can provide supports,

target TA, impose sanctionstarget TA, impose sanctions

Selected Principles of a Focused Monitoring System State EDHI program can publish an annual State EDHI program can publish an annual

ranking of hospitals based on dataranking of hospitals based on data The system can include clear known The system can include clear known

triggers for TA or sanctionstriggers for TA or sanctions Limited resources are allocated to the areas Limited resources are allocated to the areas

of greatest needof greatest need Monitoring strategy is systematic and can Monitoring strategy is systematic and can

be progressivebe progressive

For IDEA:

Priorities are the key elements that if Priorities are the key elements that if fully implemented would make a fully implemented would make a significant difference for children significant difference for children

with disabilities.with disabilities.

Priorities were selected by a Priorities were selected by a stakeholder group.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 benchmarkCategory 1: meeting or exceeding benchmark Category 2: below benchmark, but should be able Category 2: below benchmark, but should be able

to meet benchmark relatively quicklyto meet benchmark relatively quickly Category 3: below benchmark; needs more Category 3: below benchmark; needs more

intensive intervention to reach benchmarkintensive intervention to reach benchmark Category 4: unacceptable (receive intensive Category 4: unacceptable (receive intensive

OSEP intervention)OSEP intervention)

Examples of Priorities and Indicators: Part C Priority 1: Effective State Supervision-Child Priority 1: Effective State Supervision-Child

Find: All eligible infants and toddlers are Find: All eligible infants and toddlers are appropriately identifiedappropriately identified Indicator: Percentage of children identified as Indicator: Percentage of children identified as

compared to the general population of the same compared to the general population of the same ageage

Indicator: Percentage of over or under Indicator: Percentage of over or under representation of total eligible population representation of total eligible population disaggregated by race and ethnicitydisaggregated by race and ethnicity

Examples of Priorities and Indicators: Part C Priority 4: Inclusion of infants and toddlers Priority 4: Inclusion of infants and toddlers

in typical community and school settings in typical community and school settings with their nondisabled peers with needed with their nondisabled peers with needed supports.supports. Percentage of infants and toddlers whose Percentage of infants and toddlers whose

primary service location is home or primary service location is home or settings designed for typical children, settings designed for typical children, disaggregated by race and ethnicitydisaggregated by race and ethnicity

Examples of JCIH Principles and Quality Indicators Principle 1: All infants have access to Principle 1: All infants have access to

hearing screening using a physiologic hearing screening using a physiologic measuremeasure Indicator 1: Percentage of infants Indicator 1: Percentage of infants

screened during the birth admissionscreened during the birth admission Indicator 2: Percentage of infants Indicator 2: Percentage of infants

screened before 1 month of agescreened before 1 month of age

Examples of JCIH Principles and Quality Indicators Principle 2: All infants who do not pass the birth Principle 2: All infants who do not pass the birth

admission screen and any subsequent rescreening admission screen and any subsequent rescreening begin appropriate audiologic and medical begin appropriate audiologic and medical evaluations to confirm the presence of hearing loss evaluations to confirm the presence of hearing loss before 3 months of agebefore 3 months of age Indicator 2: Percentage of infants whose Indicator 2: Percentage of infants whose

audiologic and medical evaluations are audiologic and medical evaluations are obtained before an infant is 3 months of ageobtained before an infant is 3 months of age

Louisiana Implementation

Examined the principles and established Examined the principles and established prioritiespriorities

Ranked hospitals and provided reportsRanked hospitals and provided reports Provided targeted technical assistanceProvided targeted technical assistance

Data collection in Louisiana

59 hospitals are using the electronic birth 59 hospitals are using the electronic birth certificate (EBC) to transmit birth certificate and certificate (EBC) to transmit birth certificate and hearing screening information.hearing screening information.

Seven hospitals send screening results on a paper Seven hospitals send screening results on a paper form, which are then entered into the EHDI form, which are then entered into the EHDI database and are matched to the birth certificate.database and are matched to the birth certificate.

One hospital uses a computer disk to send One hospital uses a computer disk to send screening results, which are downloaded into the screening results, which are downloaded into the EHDI database and are matched to birth EHDI database and are matched to birth certificates.certificates.

Targeting of Hospitals

EHDI staff chose two indicators to begin EHDI staff chose two indicators to begin focused monitoring:focused monitoring: 1. Percentage of infants screened during 1. Percentage of infants screened during

the birth admission.the birth admission. 2. Percentage of infants who do not pass 2. Percentage of infants who do not pass

the birth admission screen.the birth admission screen.

Targeting of Hospitals

Four categories for each indicator: A, B, C and DFour categories for each indicator: A, B, C and D Indicator 1: A >= 95%, B = 90% - 94.9%, C = Indicator 1: A >= 95%, B = 90% - 94.9%, C =

80% - 89.9%, D < 80%80% - 89.9%, D < 80% Indicator 2: A < = 4%, B = 4.1% - 10%, C = Indicator 2: A < = 4%, B = 4.1% - 10%, C =

10.1% - 20%, D > 20%10.1% - 20%, D > 20% One additional category added for Indicator 2: One additional category added for Indicator 2:

Requires Review, for hospitals referring 0% of Requires Review, for hospitals referring 0% of all infants for further testing.all infants for further testing.

Before focused monitoring

Only 19 out of 68 hospitals were reporting results Only 19 out of 68 hospitals were reporting results consistently. consistently.

Multiple problems including: limited knowledge Multiple problems including: limited knowledge of reporting, lack of knowledge on procedures, of reporting, lack of knowledge on procedures, lack of communication between medical records lack of communication between medical records and nursery staff, and lack of supervision.and nursery staff, and lack of supervision.

Some hospitals were screening but not reporting Some hospitals were screening but not reporting results.results.

Before focused monitoring

Screening rates in all hospitals varied from Screening rates in all hospitals varied from 18.7% to 100.0%, with an average of 84.7%18.7% to 100.0%, with an average of 84.7%

Screening rates in Screening rates in targetedtargeted hospitals varied hospitals varied from 18.7% to 77.3%, with an average of from 18.7% to 77.3%, with an average of 50.4%50.4%

Fifteen hospitals received a D for Indicator Fifteen hospitals received a D for Indicator #1#1

Before focused monitoring

Referral rates in all hospitals varied from 0.0% to Referral rates in all hospitals varied from 0.0% to 48.8%, with an average of 7.1%48.8%, with an average of 7.1%

Referral rates in Referral rates in targetedtargeted hospitals varied from hospitals varied from 20.5% to 48.8%, with an average of 28.1%20.5% to 48.8%, with an average of 28.1%

Seven hospitals received a D for Indicator #2Seven hospitals received a D for Indicator #2 Six hospitals reported 0% for this indicator and Six hospitals reported 0% for this indicator and

required additional review.required additional review.

Screening Rates before Monitoring

77.3 76.5 76.2

67.766.0

64.0

56.754.5

52.2

43.2

28.2 28.024.6

22.218.7

0.0

10.0

20.0

30.0

40.0

50.0

60.0

70.0

80.0

90.0

A B C D E F G H I J K L M N O

Targeted Hospitals

Per

cen

t S

cree

ned

Referral rates before monitoring

20.5 21.323.5

25.4 26.3

31.0

48.8

0.0

10.0

20.0

30.0

40.0

50.0

60.0

H D A K N P Q

Targeted Hospitals

Per

cen

t R

efer

red

After focused monitoring

Screening rates in all hospitals varied from Screening rates in all hospitals varied from 55.4% to 100.0%, with an average of 92.7%55.4% to 100.0%, with an average of 92.7%

Screening rates in Screening rates in targetedtargeted hospitals varied hospitals varied from 55.4% to 96.8%, with an average of from 55.4% to 96.8%, with an average of 84.4%84.4%

Only three hospitals remained in Category Only three hospitals remained in Category D for Indicator #1D for Indicator #1

After focused monitoring

Referral rates in all hospitals varied from 0.0% to Referral rates in all hospitals varied from 0.0% to 42.1%, with an average of 6.7%42.1%, with an average of 6.7%

Referral rates in Referral rates in targetedtargeted hospitals varied from hospitals varied from 9.4% to 42.1%, with an average of 20.3%9.4% to 42.1%, with an average of 20.3%

Only four hospitals remained in Category D for Only four hospitals remained in Category D for Indicator #2Indicator #2

Three hospitals reported 0% for this indicator and Three hospitals reported 0% for this indicator and required additional review.required additional review.

Screening rates after monitoring

77.3 76.5 76.2

67.766.0

64.0

56.754.5

52.2

43.2

28.2 28.024.6

22.218.7

90.6

96.8

92.590.6 90.9

96.4

82.7

57.9

82.4

96.5

91.9 92.0

68.5

80.7

55.4

0.0

10.0

20.0

30.0

40.0

50.0

60.0

70.0

80.0

90.0

100.0

A B C D E F G H I J K L M N O

Targeted Hospitals

Per

cen

t S

cree

ned

Referral rates after monitoring

20.5 21.323.5

25.4 26.3

31.0

48.8

13.515.9

9.4

26.4

22.5

12.6

42.1

0.0

10.0

20.0

30.0

40.0

50.0

60.0

H D A K N P Q

Targeted Hospitals

Per

cen

t R

efer

red

On-site focused monitoring in Louisiana hospitals:

Preconceived Notions & Discoveries

Pre-conceived notion #1

That all hospital That all hospital hearing screening hearing screening programs were programs were currently testing currently testing at at leastleast all infants all infants with risk factors for with risk factors for hearing loss.hearing loss.

(mandated 1994)(mandated 1994)

Discoveries

Discussed the importance of newborn screeningDiscussed the importance of newborn screening Discussed the new state law mandating universal Discussed the new state law mandating universal screening and issues regarding legal compliancescreening and issues regarding legal compliance Reviewed the Louisiana Reviewed the Louisiana Hearing Screening Hearing Screening GuidelinesGuidelines

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 That all birthing hospitals in the hospitals in the state of Louisiana state of Louisiana owned appropriate owned appropriate hearing testing hearing testing equipmentequipment..

Discoveries

Discussed specific equipment difficulties and Discussed specific equipment difficulties and attempted to troubleshoot if within our expertiseattempted to troubleshoot if within our expertiseShared the name/contact number for equipment sales Shared the name/contact number for equipment sales representatives servicing their equipmentrepresentatives servicing their equipment Discussed alternate sources for new equipmentDiscussed alternate sources for new equipment

Several of the hospitals had no Several of the hospitals had no equipment or non-functioning equipment.equipment or non-functioning equipment.

During focused monitoring on-site visits we:

Pre-conceived notion #3

That testing That testing personnel could personnel could properly operate the properly operate the hearing testing hearing testing equipment.equipment.

Discoveries

Discovered many technicians were poorly trained or Discovered many technicians were poorly trained or lacked experiencelacked experience Reviewed the supervisor’s role in training and Reviewed the supervisor’s role in training and supervising technician screening including holding supervising technician screening including holding in-service training sessions for techniciansin-service training sessions for technicians Discussed protocols and procedural issues to Discussed protocols and procedural issues to improve screening pass rate including rescreening and improve screening pass rate including rescreening and dual technologydual technology

Many hospitals had hearing screening failure rates over 4%.

During focused monitoring on-site visits we :

Pre-conceived notion #4

That all screening That all screening programs had programs had supervisors that supervisors that were either were either audiologists or audiologists or physicians trained physicians trained in infant hearing in infant hearing screening.screening.

Actual situation

Reviewed the rules requiring each screening Reviewed the rules requiring each screening program to have an audiologist or trained program to have an audiologist or trained physician as supervisor.physician as supervisor.Discussed possible supervisors within the Discussed possible supervisors within the hospital system or in close physical proximity.hospital system or in close physical proximity.Set up meetings between hospital administrators Set up meetings between hospital administrators and possible supervisorsand possible supervisorsMet with new supervisors and helped create Met with new supervisors and helped create protocols and proceduresprotocols 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 That hospitals were accurately reporting accurately reporting screening results on screening results on the electronic birth the electronic birth certificate.certificate.

Discoveries

Discovered many medical records departments Discovered many medical records departments had not been instructed to begin using the hearing had not been instructed to begin using the hearing screening portion of the EBCscreening portion of the EBCDiscussed many common reporting errors Discussed many common reporting errors Discussed reporting difficulty with infants not Discussed reporting difficulty with infants not receiving screening within 24 hours of birth when receiving screening within 24 hours of birth when EBC is being filled out (NICU, c-section EBC is being filled out (NICU, c-section deliveries, jaundice, etc.)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 That each hospital hearing hospital hearing screening screening program was program was connected to the connected to the proper follow-up proper follow-up system.system.

Actual situation

Proper referral procedures to include having an Proper referral procedures to include having an audiology appointment prior to dischargeaudiology appointment prior to dischargeLocal and statewide referral sources for ENT/ Local and statewide referral sources for ENT/ Audiology / Part C services/ Parent ResourcesAudiology / Part C services/ Parent ResourcesParent Pupil Education Program availability for Parent Pupil Education Program availability for those with confirmed hearing lossesthose with confirmed hearing lossesImproving communication with primary care Improving communication with primary care physiciansphysicians

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 Demonstrated improvements to hospitals and state systemsystem

Stakeholder input into state prioritiesStakeholder input into state priorities Structure for systematic evaluation and Structure for systematic evaluation and

progressive evaluation of individual hospitals and progressive evaluation of individual hospitals and state programstate program

Measurable improvements that can be tracked and Measurable improvements that can be tracked and comparedcompared

Focuses limited state resourcesFocuses limited state resources

Future Plans

Annual establishment of priorities by State Annual establishment of priorities by State Advisory CouncilAdvisory Council

Consider sanctions for poor performance and Consider sanctions for poor performance and rewards for outstanding performancerewards for outstanding performance

Wider distribution of data to increase Wider distribution of data to increase improvementsimprovements

Priorities can be used as extended 5 – 10 year Priorities can be used as extended 5 – 10 year plans for improvementsplans for improvements

Focus limited resources to give targeted TA and Focus limited resources to give targeted TA and trainingtraining