THE MARYLAND EARLY HEARING DETECTION AND INTERVENTION PROGRAM ”Maryland EHDI Program Update”

THE MARYLAND EARLY HEARING DETECTION AND THE MARYLAND EARLY HEARING DETECTION AND INTERVENTION PROGRAMINTERVENTION PROGRAM

 ””Maryland EHDI Program Update”Maryland EHDI Program Update”

MAY 16, 2013MAY 16, 2013

Tanya D. Green, M.S., CCC-A

Program Chief, Maryland Infant Hearing Program

Maryland Department of Health and Mental Hygiene

Prevention and Health Promotion Administration

Office for Genetics and People with Special Health Care Needs

MISSION AND VISIONMISSION AND VISIONof the Prevention and Health of the Prevention and Health Promotion AdministrationPromotion Administration

MISSIONThe mission of the Prevention and Health Promotion Administration is to protect, promote and improve the health and well-being of all Marylanders and their families through provision of public health leadership and through community-based public health efforts in partnership with local health departments, providers, community based organizations, and public and private sector agencies, giving special attention to at-risk and vulnerable populations.

VISIONThe Prevention and Health Promotion Administration envisions a future in which all Marylanders and their families enjoy optimal health and well-being.

The Infant Hearing Program (IHP) is part ofThe Infant Hearing Program (IHP) is part of

The Office for Genetics and People with The Office for Genetics and People with Special Health Care Needs (OGPSHCN)Special Health Care Needs (OGPSHCN)

Donna X. HarrisDirector of OGPSHCN

Debbie Badawi, M.D.Medical Director

MISSION OF OGPSHCNMISSION OF OGPSHCN

The mission of the Office for Genetics and People with Special Health Care Needs (OGPSHCN) is to assure a comprehensive, coordinated system of care that meets the needs of Maryland’s children and youth with special health care needs and their families and is community-based, family-centered and culturally competent.

Vision of OGPSHCNVision of OGPSHCN

The vision of the Office for Genetics and People with Special Health Care Needs is to become a nationally recognized leader in developing the unique potential of each Maryland child and young person served through its comprehensive, fully integrated and consumer-friendly system of care.

Current OGPSHCNCurrent OGPSHCNOrganizational StructureOrganizational Structure

Infant and Children Follow Up Services: Sickle Cell Disease Children’s Medical Services Infant Hearing Newborn Screening Follow Up Birth Defects and Reporting Information System Critical Congenital Heart Disease (CCHD) ScreeningInfrastructure and Systems Development Systems of Care Medical Homes Youth Transition Grants Administration Family Resource Coordination

Mission of The Maryland Mission of The Maryland Infant Hearing ProgramInfant Hearing Program

To promote the best communication outcomes for infants with hearing loss by creating and maintaining systems of care that identify these infants and ensure their referral to appropriate intervention services at the earliest possible age.

The problems of deafness are deeper and more complex if not more important then those of blindness. Deafness is a much worse misfortune for it means the loss of the most vital stimulus – the sound of the voice that brings language, sets thoughts astir, and keeps us in the intellectual company of man.

Blindness separates us from things but deafness separates us from people.

Helen Keller

MD EHDI PROGRAM MD EHDI PROGRAM OVERVIEWOVERVIEW

Why Universal Newborn Why Universal Newborn Hearing ScreeningHearing Screening

1 to 3 babies per 1,000 will be born with a permanent hearing loss each year in the United States.

Approximately 1 in 1,000 newborns is born profoundly deaf.

2-3 out of 1,000 babies are born with partial hearing loss.

According to the Hearing Loss Association of America, approximately “30 school children per 1,000 have a hearing loss.”

1-3-6 Principle

Goals of EHDI (Early Hearing Detection and Intervention) endorsed by the JCIH, AAA, ASHA and the AAP

Hearing Screening by 1 month of age Hearing identification by 3 months of

age Intervention by 6 months of age

Children with hearing loss who do not receive intervention services by Children with hearing loss who do not receive intervention services by 6 months of age are at greater risk for delays in speech and language 6 months of age are at greater risk for delays in speech and language

development.development.

LegislationLegislation

Federal LegislationFederal Legislation

1999 NY Rep. Jim Walsh introduced the “Newborn and Infant Screening and Intervention Act”

Create the EHDI program within the U.S. Department of Health and Human Services

Currently 45 states have legal mandates

EHDI programs in all 50 states

Maryland LegislationMaryland Legislation

July, 2000 SB 624, Health-General Article, Sec. 13-601-605, Annotated Code of Maryland, Universal Newborn Hearing Screening

All newborns to undergo hearing screening before discharge

Insurances required to cover cost of screening and one diagnostic evaluation

Anticipated Updates to the UNBHS Anticipated Updates to the UNBHS LegislationLegislation

The proposed legislative changes to Md. HEALTH-GENERAL Code Ann. §§13-601-13-605 will be:

(1) update procedures to allow flexibility with respect to changing standards of care

(2) update what is now considered to be archaic language(3) require audiologists to report hearing screening and diagnostic

evaluation results to the program(4) establish reporting procedures for out of hospital births(5) include a representative from the Governor’s Office of the Deaf

and Hard of Hearing as part of the advisory council membership

(6) revise the minimum number of times that the advisory council is required to meet per year

(7) rename the program and advisory council as the Maryland Early Hearing Detection and Intervention Program and the Maryland Early Hearing Detection and Intervention Advisory Council, respectively.

Program MethodsProgram Methods

Infant Hearing Program Infant Hearing Program MethodsMethods

Level 1 = Birth Screen – results provided to program Level 2 = follow-up of infants who failed or missed the

birth screen and no screen or repeat screen has been received by 6 weeks of age; Level 2 follow up is conducted by the Infant Hearing Program Follow-Up Coordinators

Level 3 = infants who have had at least 2 hearing screenings without a pass result and are therefore in need of a diagnostic evaluation; Level 3 follow-up is conducted by the Program Audiologist

Contacts are made by phone/fax/letter to inform/remind parents and PCPs that a screening or diagnostic evaluation needs to be completed

3 attempts to contact at Level 2 and 3, then LTF/LTD (Lost to follow-up/lost to documentation)

Level 1 Tracking and Level 1 Tracking and SurveillanceSurveillance(birth screen)(birth screen)

Goal: to complete birth screen prior to hospital discharge, or no later than 1 month of age

Level 2 Tracking and SurveillanceLevel 2 Tracking and Surveillance(Post Discharge Screening)(Post Discharge Screening)

Goal: follow up of infants who missed or did not pass the birth screen

Follow up coordinators encourage families of infants who missed the birth screen to schedule an appointment for the screen

Follow up coordinators encourage families of infants that fail screening to schedule diagnostic hearing evaluation….threshold ABR (clicks, tone bursts, bone conduction), immittance (high frequency tympanometry) and reflexes

Helps facilitate referral from Primary Care Physicians to the audiologist

Level 3 Tracking and SurveillanceLevel 3 Tracking and Surveillance(Diagnostic)(Diagnostic)

Follow up of infants who did not pass a screening and have been referred for a complete audiogical evaluation

Audiologist reviews diagnostic evaluation reports

(Report results are entered into the MD Infant Hearing Program data system)

Ensures appropriate testing is received Encourages re-evaluation if necessary Assists in facilitating referral into early intervention Risk factor (for later onset, progressive hearing loss)

monitoring

MD EDHI Infant Hearing Screening Path

WellBaby

NICUABR

Screening

PassYes

Risk factor?

NoFollow up as

needed

DHMH Letter

Full Hearing Evaluation

(Age dependent on risk factor)

Did Not Pass

Referral to Audiologist

DHMH Contact

Diagnostic Hearing Evaluation by an

audiologist no later than 3 months of

age

If no pass, entry into

early intervention by 6 months

of age

Hearing Screening

Pass

Did Not Pass

Risk factor?

No

Yes DHMH Letter

Complete Diagnostic Hearing Evaluation by an

audiologist no later than 20 months of age (dependent on

risk factor)

Outpatient Screen

Written results should always be provided to the family.

Pass

Follow up as needed

Did Not Pass

Referral to Audiologist

DHMH Contact

Complete Diagnostic Hearing Evaluation by an audiologist no later than 3 months as age

If no pass, entry into early intervention by

6 months of age

Risk Factors for Later Onset Risk Factors for Later Onset and Progressive Hearing Lossand Progressive Hearing Loss

Incidence of hearing loss at birth is estimated to be 1-3 per 1000

Incidence of hearing loss at school age is estimated to be over 6 per 1000

Parents and care providers need to understand the need for continuous monitoring

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Some Risk Factors for Later Some Risk Factors for Later Onset, Progressive Hearing LossOnset, Progressive Hearing Loss

Caregiver concern regarding hearing, speech, language, or developmental delay

Family history of permanent childhood hearing loss. Neonatal intensive care of >5 days, or any of the following

regardless of length of stay: ECMO, assisted ventilation, exposure to ototoxic medications (gentamycin and tobramycin) or loop diuretics (furosemide/lasix), and hyperbilirubinemia requiring exchange transfusion.

Administration of ototoxic medications Craniofacial anomalies Physical findings, such as white forelock, associated with a

syndrome known to include a sensorineural or permanent conductive hearing loss.

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Risk Factors, continuedRisk Factors, continued

Syndromes associated with hearing loss or progressive or late-onset hearing loss, such as neurofibromatosis, osteopetrosis, and Usher syndrome. Other frequently identified syndromes include Waardenburg, Alport, Pendred, Jervell and Lange-Nielson, BOR (brachio-oto-renal), Goldenhar, CHARGE association, Pierre Robin, Sticklers, Trisomy 21, and choanal atresia._

Neurodegenerative disorders, such as Hunter syndrome, or sensory motor neuropathies, such as Friedreich ataxia and Charcot-Marie-Tooth syndrome

Culture-positive postnatal infections associated with sensorineural hearing loss, including confirmed bacterial and viral (especially herpes viruses and varicella) meningitis

Head trauma, especially basal skull/temporal bone fracture requiring hospitalization.

Chemotherapy

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Reporting Screening and Reporting Screening and Diagnostic Test Results to MD Diagnostic Test Results to MD

EHDIEHDI

MD EHDI reportingMD EHDI reporting

Starting June, 2008

Hearing screening results entered into online data management system : eSP

Birthing hospitals receive eSP™ training

MDEHDI.comMDEHDI.comeSPeSP User access through secure

user name and password Real-time access to results Provider access throughout

the cascade of care Improved capability to track

and follow up Powerful data base –

improved statistical analysis capabilities

StatisticsStatistics

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MD EHDI Database Users

If only it were that easy…If only it were that easy…

Phone calls, faxes, letters!

Parents and physicians who have not yet followed up

Families’ “not at this address”, phone number “has been disconnected and is no longer in service”

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ChallengesChallenges

ChallengesChallenges

Catch the infants who miss the initial screening (1% of the

birth population)

Babies who miss the initial

screening are 4 times more likely to not

have follow up testing as compared to

those who had but did not pass the

inpatient screening.

ChallengesChallenges Foster better relationships with the

audiology and physician communities and increase outreach to parents.

Better relationships can lead to

improved lost to documentation

rates. Much of Maryland’s Lost to Follow-up population is really

only Lost to Documentation.

What We Would Like From All What We Would Like From All Birth HospitalsBirth Hospitals

Report all births to DHMH Infant Hearing Program Screen all newborns Report hearing screening results to DHMH Infant

Hearing Program Report all risk factors for later onset, progressive

hearing loss Communicate results to parents in culturally

competent fashion in written and verbal format Forward results to the Primary Care Physician Have a referral mechanism established for babies

that refer and are missed

What We Would Like to What We Would Like to Happen With the ResultsHappen With the Results

Results entered into the MD Infant Hearing online data system

Hospitals to provide written and verbal results to families, but letters sent to all new parents from DHMH if baby referred or missed.

Babies that are missed or do not pass are contacted by Infant Hearing staff

Increasing Collaboration with Increasing Collaboration with Community Partners…Community Partners…

Outreach to parents through parent to parent mentoring program and educational materials

Encourage parents and professionals to participate in the EHDI Process

Increase participation in Medical Home Models and Out of Hospital Birthing Centers

Attend Bi-Monthly Hearing Advisory Council Meetings/Meetings are open to the public

Encourage continual submission of screening and evaluation results to the State

Increase collaboration with all stakeholders

MD EHDI PartnershipsMD EHDI Partnerships

Parent Connections Mentor Program, through the Parents

Place of Maryland

Maryland AAP EHDI Chapter Champion – Susan Panny, M.D.

Funding Sources:Funding Sources:

• Centers for Disease Control and Prevention (CDC)

• Health Resources and Services Administration (HRSA)

CDC AwardCDC AwardFunding from the CDC has been used to establish, maintain and

enhance the program’s EHDI data system.

Currently in progress: Connecting the MD EHDI data system to the state’s HIE (Health Information Exchange) to allow for auto-population of data between the 2 systems and reducing the data entry burden for staff

Within the next 3 years: MSDE EI to MD EHDI data system connection; Development of an Early Hearing Care Plan which will allow transfer of hearing health information and follow up recommendations to providers who are connected to the state’s HIE; Development of an auto-update feature for patient records which will reduce the manual data entry burden even further by importing accurate birth defect data from the hospital labor and delivery summary into the MD EHDI data system

HRSAHRSAFunding from the HRSA award is being used to reduce loss to follow up/loss to documentation (LTF/LTD). Efforts to reduce LTF/LTD are aimed at addressing the barriers of access to services, compliance with data reporting, and coordination of care between providers and agencies. Outreach and education for families and providers, along with collaborative efforts among state agencies are being used to ensure follow-up services are accessible, completed and reported in a timely manner.

Infant Hearing Follow up Coordinators

Parent Connections

NICHQ (National Initiative for Children’s Healthcare Quality) Learning Collaborative

Outreach to birthing centers and midwives

Outreach to encourage audiologists to report hearing screen and evaluation results to the program

Additional Information:Additional Information:

EHDI-PALS online database (EHDI-PALS online database (www.ehdipals.org))Pediatric Audiology Links to Services – web-based link to information, resources Pediatric Audiology Links to Services – web-based link to information, resources and services for children with hearing loss including an audiology facility locator.and services for children with hearing loss including an audiology facility locator.

The Hearing Advisory Council meets bi-monthly on the 3The Hearing Advisory Council meets bi-monthly on the 3 rdrd Thursday, beginning in Thursday, beginning in January. Meetings are open to the public and are held at 12:30 pm at the Hearing January. Meetings are open to the public and are held at 12:30 pm at the Hearing

and Speech Agency in Baltimore.and Speech Agency in Baltimore.

Maryland Infant Hearing ProgramMaryland Infant Hearing Program

Tanya D Green, Program Chief410-767-6432 tanya.green@maryland.gov

Erin Filippone, Program Audiologist 410-767-6762erin.filippone@maryland.gov

Theresa Thompson, Follow-up Coordinator 410-767-5093theresa.thompson@maryland.gov

Leah Washington, Follow-up Coordinator 410-767-6659 leah.washington@maryland.gov

This presentation will be made available on the MD

EHDI website.http://phpa.dhmh.maryland.gov/genetics/

sitepages/inf_hrg.aspx

Thank you!!Thank you!!