Lessons Learned in Sharing Early Hearing Detection and ...

Lessons Learned in Sharing Early Hearing Detection and ...

Lessons Learned in Sharing EHDI and Part C Data: Background, Current TA and a State Story IDIO Conference August 15th Using the Post-it Please tell us about EI & EHDI data collaboration: What Program do you represent?

2 DATA SHARING successes DATA SHARING challenges Presenter/Partner Introductions DaSy/ECTA TA Providers: Haidee Bernstein, Sharon Walsh, Gary Harmon

Centers for Disease Control and Prevention (CDC), Early Hearing Detection and Intervention Program (EHDI): Dr. Tonya Williams, Deidra Green National Center for Hearing Assessment and Management (NCHAM): Karl White Arizona Part C Data Manager/CQI: Annie Converse Office of Special Education Programs (OSEP): Christy Kavulic Health Resources Services Administration (HRSA) 3 Agenda Welcome/Introductions EHDI Overview (EHDI Program/Centers for Disease Control)

EHDI Data Sharing Challenges/Solutions (NCHAM) Report Out of Challenges/Solutions from States IDEA/FERPA Regulations and Impact on EHDI/Part C Data Sharing TA Example: Arizona Part C/EHDI Linking Story EHDI Outcomes Data Committee Actionable Next Steps for Each State 4 Show of Hands- Which Program do you Represent?

5 Part C 619 Both Birth to 21 or 3-21 EHDI TA Providers

Other How knowledgeable are you about the EHDI program? A lot A little None 6 Do you currently work collaboratively with the EHDI program in your state?

Yes Some/Starting No, not yet 7 Reminder: Successes and Challenges 8 National Center on Birth Defects and Developmental Disabilities CDCs Early Hearing Detection and Intervention (EHDI) Program

Tonya Williams, PhD Centers for Disease Control and Prevention Division of Human Development and Disability Child Development and Disability Branch EHDI Team DaSy Meeting August 15, 2018 Outline Background EHDI 1-3-6 Hearing Screening and Follow-up Survey

Functional Standards Next steps Background Public Health Problem Congenital hearing loss affects one to three of every 1,000 live born infants in the United States. Hearing loss can have a negative impact on a childs development. Early Hearing Detection and Intervention (EHDI) program aims to ensure that all newborns are screened for hearing loss and receive needed services. Background

Newborn hearing screening endorsed by 3 national organizations Congressionally-authorized support (S. 652, EHDI Act) Reauthorized CDC, HRSA, and NIH until 2022 No federal law 41 states, Guam, and D.C. have statutes or guidance Requirements vary All states have an EHDI program

Role of CDC State-based EHDI Information Systems (EHDI-IS) Collect, analyze, and disseminate national data Improve tracking and surveillance system related to languageacquisition evaluations and intervention services Coordinate development of standardized data management procedures Promote integration, linkage, and interoperability of systems to exchange EHDI data between clinical care and public health Study and report on the costs and effectiveness CDC EHDA Funded Jurisdictions Year 2 (44) EHDI 1-3-6 Plan

Joint Committee on Infant Hearing Joint Committee on Infant Hearing Benchmarks and EHDI Benchmarks and EHDI Early Hearing Detection and Vocabulary of Children With Hearing Loss

Significant impact on vocabulary outcomes by meeting 1-3-6 Early identification 17 Increased vocabulary Highlights from the JCIH Position Statement (2007) Screening information and audiology diagnostic should be promptly transmitted to the medical home and the state EHDI

coordinator. Data-management and tracking systems should be implemented. An effective link between health and education professionals should be established to ensure successful transition. CDC EHDI Hearing Screening and Follow-Up Survey (HSFS) What is the HSFS?

Data collection tool provided to each state and U.S. territory to capture aggregate EHDI data Data include information on infants born in the jurisdiction and tracked by the EHDI program Objectives: To provide detailed and accurate data that reflects progress by state EHDI programs towards the 1-3-6 benchmarks To provide data for national estimates on hearing screening, hearing loss, and early intervention enrollment status Hearing Screening and Follow-up Survey 2016

2005 Approved by Federal Office of Management and Budget Available data 2005-2016 Annual and voluntary survey Aggregate data Two-year reporting interval

What do the HSFS data help us do? Improve & strengthen EHDI program and data management systems Ensure infants who are deaf or hard of hearing are identified in sensitive period for language development Ensure early intervention to support language, cognitive, and

academic development Provide data for Healthy People Objectives Available Data Screening, diagnosis, and intervention (all infants) Reasons for not receiving services (died, refused, etc.)

Lost to follow-up / Lost to documentation (LFU/LTD) Type and severity Demographics Sensorineural, conductive, mixed, auditory neuropathy

Maternal age, education, ethnicity, and race Data not collected Risk factors , insurance data, outcomes Lost to Follow-up/Lost to Documentation in EHDI Definitions

Lost to Follow-up (LFU): Did not receive services Lost to Documentation (LTD): Received but results not reported LFU / LTD occurs between: Hearing Screening Rescreening Screening Diagnosis Diagnosis Intervention

Early Intervention-related Data Fields Number of babies with a permanent hearing loss who were referred to IDEA* Part C programs Number referred by 6 months of age Number of babies enrolled in and receiving Part C services Number receiving services by 6 months Number receiving non-Part C services only Number being monitored only (not receiving any services) Reasons for not receiving services *Individuals with Disabilities Education Act Hearing Status of Infants Not Passing Hearing Screening

Hearing Status of Infants Not Passing Hearing Screening (HSFS, 2016) Total Not Pass = 65,156 No Documented Diagnosis; 37.33% LFU / LTD 25% No Hearing Loss; 52.95% Hearing Loss; 9.73% Number screened = 3,755,784

Number diagnosed = 40,835 Prevalence of hearing loss = 1.7 per 1,000 screened Documented Intervention Status of Infants with Hearing Loss Documented Intervention Status of Infants No with Hearing Loss Document (HSFS, 2016) Total w. Hearing Loss = 6,337 ed EI Services; 33.42% Received

Only Monitoring Services; 0.53% LFU / LTD 20% Enrolled in EI Services (Part C and NonPart C);

66.05% Meeting the 1-3-6 EHDI Benchmarks P e rce n ta ge (% ) Meeting the 1-3-6 EHDI Benchmarks, (U.S., 2006-2016) 100.0 80.0 Screen by 1M Diagnos is by 3M

EI by 6M 60.0 40.0 20.0 0.0 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 Year Source: CDC EHDI HSFS 28

EHDI and EI Arrangements EHDI has direct access to the EI data system EI providers can enter information directly in EHDI-IS EHDI provides the demographic data on the patient and EI provides the EI information back to EHDI No arrangement Functional Standards Effective EHDI Information Systems Completeness and Quality Guidelines and data definitions Support from stakeholders such as hospitals, physicians,

audiologists, and EI programs Data Use Services & outcomes Monitor progress / areas for improvement Engage stakeholders EHDI Functional Standards

Developed by CDC and jurisdictions Intended to identify the operational, programmatic, and technical criteria that all jurisdictional EHDI programs should implement during the process of developing, using, and evaluating an EHDI-IS 8 programmatic goals / standards for each goal Goal 4: Document the enrollment status, delivery and outcome of early intervention services for infants and children <3 years old with hearing loss. www.cdc.gov/ncbddd/hearingloss/ehdi-is-functional-standards.html Next Steps Efforts to make improvements in capturing EI data

Learn more about EI programs Learn more about the reporting barriers that states are facing and try to develop strategies to overcome the barriers Support the EHDI Outcomes Data Committee Websites EHDI: https://www.cdc.gov/ncbddd/hearingloss/index.html HSFS: https://www.cdc.gov/ncbddd/hearingloss/2016-data/12-2016HSFS-508.pdf Data: https://www.cdc.gov/ncbddd/hearingloss/ehdidata.html Functional Standards: https://www.cdc.gov/ncbddd/hearingloss/ehdi-is-functionalstandards.html Thank you

& Questions Tonya Williams: [email protected] For more information, contact CDC 1-800-CDC-INFO (232-4636) TTY: 1-888-232-6348 www.cdc.gov The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention. Dr. Karl White Director, National Center for Hearing Assessment and Management Emma Eccles Jones Endowed Chair in Early Childhood Education Professor of Psychology Utah State University

Permanent hearing loss occurs more frequently than any other condition for which we can screen at birth 40 3030 30 12 20 11

6 10 0 H ea C rin g Lo

ss le ft lip D or pa ow

la te n Li m Sy nd ro m

5 b Sp de fe c ts in a

bi fid a e Incidence per 10,000 births 2 1 Si

ck PK le C el lA ne U

m ia Spectrum of Languages Signed English American Sign Language Visual Language Cued

Speech Listening & Spoken Language Spoken Language Montreal Oral School 1977-78 Listen Read along with Audio Spring is my favorite season.

The sun shines bright. The flowers begin to grow. I like spring. Audio and picture courtesy of Susan Nittrouer, Ohio State University What of enabled us to move from . Progress EHDI There to

Here? Earlier Identification of Hearing Loss Availability of Better Hearing Technology High quality, comprehensive Early Intervention programs that focus on teaching LANGUAGE

Effective EHDI (Early Hearing Detection and Intervention) Programs Effective EHDI (Early Hearing Detection and Intervention) Programs Universal Newborn Hearing Screening Start Good work, but I think we might need a little more detail right here

Diagnosis Then a Early Intervention miracle Medical Home Dataoccurs Management Program Evaluation Family Support Success!

Who is EHDI Serving? Who is EHDI Serving? Bilateral Profound; 12.40% Bilateral Severe; 7.10% Auditory Neuropathy; 2.90% Unilateral;

38.50% Bilateral Moderately Severe; 6.80% Bilateral Moderate; Bilateral Mild; 14.40% 17.90% Hearing Status of Children Reported to CDC by EHDI Programs (2012-2014) Who is EHDI Serving?

Who is EHDA Serving? Bilateral Profound; 12.40% Auditory Neuropathy; 2.90% Bilateral Severe; 7.10% Both DHH; 4.50% One Hearing, One DHH; 5.19%

Unilateral; 38.50% Bilateral Moderatel y Severe; Bilateral 6.80% Mild; Bilateral 14.40% Moderate; 17.90% Hearing Status of Children Reported to CDC by EHDI Programs (2012-2014)

Both Hearing; 90.31% Hearing Status of Parents In Gallaudet 2011-2012 Annual Survey of DHH Children and Youth 1. Have HIPPA and FERPA regulations affected EHDIs ability to provide effective services? 2. What strategies are used to facilitate the exchange of information and to connect children to services? Privacy

Regulations? 3. Does your state have legislation, memoranda of agreement, and/or policies in place that make compliance with HIPAA or FERPA easier? 4. Are the following entities (PCP, family, Part C, Family Support Organization, EHDI Program) notified when: a child fails the hearing screen a child is diagnosed with a hearing loss? 5. Does Part C notify EHDI when children who are

DHH are enrolled in Part C? 49 EHDI Program Notifications When does the EHDI program notify Part C Early Intervention about individual children? 100% 80% 60%

54% 52% 40% 28% 27% 22% 21% 20% 0%

never/rarely EHDIEHDI never/rarely notifies Part C notifies Part C EHDI notifies Partchild C EHDI notifies Part C when

fails final hearing screening test when child fails final hearing screening test 50 EHDI notifies Part

EHDI notifies Part C whenCchild is diagnosed with a permanent when child is diagnosed hearing loss with a permanent hearing loss Addressing Privacy Regulations

51 Recap: Successes and Challenges 52 Sharing Personally Identifiable Information (PII) IDEA and FERPA generally require parental consent to share PII Except . in IDEA with participating agencies or when Part C is notifying LEA for referral purposes Except.Several FERPA exceptions exist to sharing PII without parental consent

One FERPA exception is the Audit and Evaluation exception that requires development of a Data Sharing Agreement Logical strategy to use for EHDI/Part C sharing 53 EI & EHDI Partnership Key Considerations: In which agency/department is the EHDI program located? Where is the states EI program located? Where are the EHDI data and EI data housed? Separate or same data systems? What data are the EI program currently sharing with the EHDI program? What data are the EHDI program currently sharing back with EI? What additional data do you both want to share?

54 Data Sharing Agreements/ Memorandums of Understanding (MOUs) Data Sharing Agreement or MOU Prepared and completed by both EHDI and EI programs Generally includes information on: Purpose of the Agreement/MOU Background Activities/Responsibilities Data Elements to Be Shared Security of Data Data Management

Reporting Effective Date/Duration Other important info relevant to your state (specific projects or activities) 55 Data Sharing Agreements/ Memorandums of Understanding (MOUs) Dept of Education Resource: IDEA Confidentiality Requirements (what can and cannot be shared) https://studentprivacy.ed.gov/sites/default/files/resource_do cument/file/idea-confidentiality-requirements-faq_0.pdf

PTAC/DaSy Resource: Data Sharing Agreement Checklist for IDEA Part C and Part B 619 Agencies and Programs https://dasycenter.sri.com/downloads/DaSy_papers/DaSy_Da ta_Sharing_Agreement_Checklist_Acc.pdf 56 Data Sharing Agreements/ Memorandums of Understanding (MOUs) Where to start? Review current Agreements or MOUs between EI and EHDI Modify or add-to current agreements vs. new agreement?

Consider other state EHDI/EI program data sharing agreements and MOUs Access Technical Assistance if needed from PTAC, DaSy and/or ECTA 57 Arizona Department of Economic Security Arizona Arizona Early Intervention

Program Lead Agency Structure Division of Developmental Disabilities Arizona Early Intervention Program Early Hearing Detection & Intervention Office of Newborn Screening Early Hearing Detection and

Intervention Program Office of Special Healthcare Needs Reasons for Data Sharing Improve federal reporting Improve compliance with state law for reporting hearing screenings Analysis of Child Find Activities Automate the Process Answering critical questions like: Are we making a difference? Status of Data Sharing

Centers for Disease Control (CDC) Cooperative Agreement 5 Program State Agency Interagency Governmental Agreement Interagency Service Agreement Draft Data Sharing Agreement Next Steps Finish preliminary reviews Privacy Technical Assistance Center (PTAC) Review Finalize Agreement Develop business requirements (user stories) Develop application programming interface (API)

Update procedural safeguards booklet Use as a template for data sharing with Part B CDC Early Childhood Outcomes Data Committee 65 Review of 2016 Committee Formed in April 2016 Partnership between CDC EHDI and UNC Chapel Hill, which includes both DaSy and ECTA Goal: To make recommendations to the CDC EHDI

program about potential outcomes data that the EHDI programs could collect, including from Early Intervention/Part C programs Ended in December 2016 66 Review of 2016 Committee Discussed challenges with collecting EI/Part C data for EHDI reporting Reviewed the functional standards related to EI (Goal 4) Utilized two Workgroups to examine potential EI data that could be used by EHDI programs

Made recommendations about modifications or additions to the functional standards 67 2018 Committee Overview Formed in February 2018 Two Workgroups: WG1: Data Sharing WG2: Outcomes Meet as WG for two months, then full Committee every three months Membership includes EHDI state coordinator, Part C

coordinators, TA staff, researchers, CDC/EHDI staff, family representatives 68 Challenges Identified Parental consent and data sharing what data can and cannot be shared? How can states share data without parental consent? EI Data Systems vary greatly from state-to-state, including the types of data collected and how data are stored Need for increased communication between Department of Education and CDC at top levels Lack of understanding of EHDI in EI programs

(especially at the provider level) 69 Review of Workgroups Workgroup 1: Data Sharing 1. Guidance on data sharing between EHDI and Part C Review articles from NCHAM Develop fact sheet(s)/guidance document 2. Identifying state MOUs/Agreements List of MOUs/Agreement for EHDI TA website Best practices from states (including inviting states to present) 3. Develop standardized forms

MOU/Agreement template Parental Consent 4. Dissemination 70 Review of Workgroups Workgroup 2: Outcomes 1. Make recommendations on measures from 2016 Committee Use side-by-side comparison of recommended measures

2. Develop new recommended outcomes/functional standards Standardized data collected by EI (including family outcomes) 3. Discuss feasibility/likelihood that recommended measures can be collected (prioritize importance of outcomes) 71 Potential Committee Results/Recommendations Workgroup 1: Data Sharing Survey EHDI coordinators about challenges with data

sharing Update guidance documents from NCHAM (2008) Dissemination Workgroup 2: Outcomes 72 Finish reviewing 2016 Committee recommended outcomes Review new recommended outcomes Develop critical questions for recommended outcomes

Develop measures for recommended outcomes What this all means Continue working with all partners (DaSy, ECTA, NCHAM, OSEP and HRSA) Continue collaboration at the local, state and federal level to reduce barriers and minimize challenges 73 Future Work and TA Support Do you want assistance with data sharing between Part C and EHDI

in your state? Contact: Gary Harmon [email protected] 74 Actionable Next Steps What are your next steps when you return to your state? Who will you work with to move this forward? How can DaSy help? 75

Resources Centers for Disease Control (CDC), Hearing Loss in Children (https://www.cdc.gov/ncbddd/hearingloss/facts.html) CDC EHDI Program Page ( https://www.cdc.gov/ncbddd/hearingloss/ehdi-is-functional-standards-.html) National Center for Hearing Assessment and Management (NCHAM) (https://www.infanthearing.org/) Health Resources Services Administration (HRSA) Universal Newborn Screening and Intervention Program ( https://mchb.hrsa.gov/maternal-child-health-initiatives/early-hearing-det ection-and-intervention.html )

76 Resources DaSy Data Governance and Management Toolkit: Data Parnerships Section ( https://dasycenter.org/data-governance-management-toolkit/governance-of-datapartnerships/ ) Early Childhood Technical Assistance (ECTA) Special Collection: Deaf and Hard of Hearing http://ectacenter.org/topics/earlyid/idspecpops.asp Privacy Technical Assistance Center (PTAC): Privacy and Data Sharing https://studentprivacy.ed.gov/privacy-and-data-shari

ng 77 Contact DaSy Visit the DaSy website at: http://dasycenter.org/ Like us on Facebook: https://www.facebook.com/dasycenter Follow us on Twitter: @DaSyCenter 78 Acknowlegdments

The contents of this tool and guidance were developed under grants from the U.S. Department of Education, #H373Z120002 and #H326P170001. However, those contents do not necessarily represent the policy of the U.S. Department of Education, and you should not assume endorsement by the Federal Government. Project Officers: Meredith Miceli, Richelle Davis, and Julia Martin Eile. 79

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