Trends across the country. Indiana Early Hearing Detection 4/13/2015

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1 Trends across the country Indiana Early Hearing Detection and Intervention (EHDI) Shortage of pediatric audiologists Shortage of educators and SLPs skilled in working with deaf and hard of hearing children Rebekah F. Cunningham, Ph.D. Director, EHDI Program Trends across the country We re doing very well on getting most babies screened and getting better at diagnosing early, but what about early intervention and outcomes? FERPA/HIPAA issues EHDI cannot obtain EI data at an individual level from First Steps/Part C (more on this later ) Research is now being conducted to assess developmental outcomes as a result of earlier intervention (CDC survey) Trends across the country It may be more difficult to track individual data vs. aggregate data but how else do we move forward? Each state has their own EHDI process, system, and terminology States must begin to speak the same language in order to combine individual data in a meaningful way Trends across the country Health Information Technology (HIT) Movement toward electronic medical records Eventual goal of electronic reporting of screening and diagnostic results directly into state database Will reduce personnel time currently required for manual data entry Will reduce human error in reporting Will ensure no babies are missed Hospital EMR must use the same language as state database FYI In 1993, only 3% of babies received a newborn hearing screening In 2012, 96 97% of babies received a newborn hearing screening Average age of identification: 1980s: 30 months 2003: 6 months 2007: 3 months (White/NCHAM, 2008) 1

2 EHDI Goals and Basics Primary objectives of EHDI Identify children as deaf and hard of hearing as early as possible Enhance their development and opportunities for success through appropriate programming and intervention Develop, maintain, and enhance systems that allow for #1 and #2 EHDI Goals and Basics (as you know) 1 3 6!! Screen by 1 month Diagnose by 3 months Early intervention by 6 months So How did we do as a country? Data for 2012 is the most recent accumulated Data for 2013 has been submitted but all data from across the country has yet to be compiled Summary of 2012 National CDC EHDI Data Data Source: 2012 CDC EHDI Number of Respondents: 57α (50 states, 6 territories, and the District of Columbia) 2012 Documented EHDI Data Items Total Occurrent Births (according to state & territorial EHDI programs) 3,953,986 Documented Hearing Screening Percent Screened 96.6% (n = 3,820,624) Percent Screened (excluding infant deaths & parental refusals) 97.1% Percent Screened before 1 Month of Age 86.0% (n = 3,287,614) Documented Diagnosis*(based on 52,961 infants not passing) Percent Confirmed: 54.9% (n = 29,078) loss) Percent with No Hearing Loss (i.e., no diagnosed hearing 44.6% (n = 23,603) Percent with Hearing Loss 10.3% (n = 5,475) Percent Confirmed (normal hearing + hearing loss) before 3 Months of Age 69.1% (n = 20,102) Prevalence of Hearing Loss (Range per 1,000) 1.6 per 1,000 screened No Documented Diagnosis* Percent w. No Documented Diagnosis (of those not passing): 45.1% (n = 23,883) Percent Loss to Follow up (LFU) / Loss to Documentation (LTD) for Diagnosis LFU/LTD = # Parents/Family Contacted but Unresponsive (9,547) + # Unable to Contact (2,773) + # Unknown (6,686) 35.9% (n = 19,006) (Range %) Other Cases of Hearing Loss Number of Additional Cases (e.g., late onset hearing loss & infants not screened at birth) n = 438 Number of Cases of Non Permanent / Transient Hearing Loss n = 1,375 2

3 Documented Referral to Early Intervention (EI)**(based on 5,718 infants w. hearing loss) Percent Referred to Part C EI (of those with hearing loss) 87.6% (n = 5,011) Percent Eligible for Part C EI (of those referred) 83.1% (n = 4,163) Percent Not Referred to Part C and Unknown (of those with hearing loss) 13.0% (n = 742) Documented Enrollment in EI** Receiving EI = # in Part C EI (3,427) + # in Non Part C EI (100) 61.7% (n = 3,527) (Range 0.0% 100%) No Documented Enrollment in EI** Percent Receiving No EI Services (of those with hearing loss) 36.8% (n = 2,105) Percent LFU / LTD for Intervention LFU/LTD = # Parents/Family Contacted but Unresponsive (205) + # Unable to Contact (169) + # Unknown (1,030) 24.6% (n =1,404) Percent Receiving EI before 6 Months of Age (Part C & Non Part C) 67.1% (n = 2,367) Overview of Indiana EHDI The Program, System and Process The Program is housed at the Indiana State Dept of Health and has consultants across the state The System includes agencies, organizations and individuals involved in coordination, direct services, advocacy, and policy The Process begins at birth IN EHDI System and Administration Indiana State Department of Health Division of Maternal and Children s Health Genomics and Newborn Screening EHDI Program Funding Indiana state government CDC Grant HRSA Grant 3

4 EHDI System and Administration EHDI Staff Director Follow Up Coordinator 2 EHDI Parent Consultants 8 Regional Consultants (Audiologists) Guide By Your Side Director 10 GBYS Parent Guides Support staff Surveillance of EHDI Process through E.A.R.S. Medical Home Family Support Interagency Cooperation EHDI in Indiana Components of the Program EHDI in Indiana: Partners and Stakeholders 102 birthing facilities Physicians and nurses, local health depts Early intervention direct service providers State and private entities and organizations Indiana State Dept of Health EHDI Advisory Committee THE BABIES AND THEIR PARENTS! EHDI Process 83 85,000 babies born in Indiana each year Birthing centers use AABR (84%) and OAE (16%) EHDI Process Two inpatient screens If DNP second screen, refer for diagnostic audiology evaluation Refer rate should be 1.5 4% in well baby nursery Slightly higher for NICU Hospital screening programs are monitored to ensure they are within expected refer rate EHDI Process Babies are screened at birthing facility If homebirth, may seek out screening at a local hospital or clinic The only acceptable reason for not getting screened is a religious refusal/waiver Babies who do not pass (x2) are referred immediately for diagnostic audiology evaluation 4

5 EHDI Process Babies who do not pass are reported to EHDI by birthing facility within 5 days of discharge Babies who did not receive a screening for any reason are reported to EHDI (religious refusal, hospital error, equipment failure, etc.) Newborn Hearing Screening 98% of birthing facilities report newborn screening data through the EHDI webbased data system EARS. Outreach to nurse midwives continues A few midwiferies screen themselves most refer to local hospital for outpatient screen Approximately 60 70% of babies with an unknown NBHS status are home births EARS Requires Report all babies not screened for any reason Report all babies not passing two screens Report all babies who passed but have risk indicators for delayed onset hearing loss Newborn Hearing Screening Ongoing training and monitoring program for personnel Structured plan for follow up Ability to track program performance (important for quality assurance and for JCAHO requirements) Parent Consultant EHDI Parent Consultant is alerted about babies that do not pass and contacts the families to assist with follow up, and sends a letter to the family and to the PCP Parent Consultant Each month, the Parent Consultants: 250 phone calls to parents 150 calls to physician offices 45 calls to audiologists 30 calls to hospitals >400 letters sent 5

6 EHDI Process If a diagnostic audiological evaluation (DAE) form is received that indicates a permanent hearing loss, the Follow up Coordinator will send the family and PCP letters with a Ready Guide providing information, resources, and education for parents about hearing (more later) Follow up Coordinator CDC Annual Survey 90 alerts processed Follow up on approximately new IDs/month MSR technical assistance and reports New user requests EHDI Process PCP receives Physician Tool Kit The letter, a survey, PCP Med Home Care Management, Resources, PCP Care Plan, H&V Brochure and GBYS insert The GBYS coordinator then contacts the family to offer the services of a Parent Guide Guide By Your Side Program of Hands and Voices Guides are specially trained parents of deaf or hard of hearing children Provide unbiased support to families, from the perspective of someone who has walked a similar path Connect families to support organizations and assist them into Early Intervention Guide By Your Side Indiana s parent guides have a variety of backgrounds: Spanish speaking Amish and homebirth communities Unilateral hearing loss Cochlear implants Hearing aids Parent guide is specifically chosen for each family s personal needs and geographical considerations Parent Guide Parent Guides provide approximately 60+ hours of family support monthly GBYS Coordinator and Outreach Coordinator enroll approxiamtely 10 families/month 6

7 Regional Consultant s role 8 audiologists cover 8 regions Provide training and support to hospital screening programs and audiologists (when necessary) One face to face visit per 80%+ of the hospitals annually Monitor hospital Monthly Summary Report (MSR) performance Contribute with Director and F/U Coordinator in creation/modification of hospital screening guidelines and DAE protocols Regional Consultant s role Provide ongoing physician education regarding the EHDI process and infant hearing/benefits of early intervention Participate in presentations and conferences to share the EHDI process and goals Audiologist s role Diagnostic testing of babies referred through UNHS using evidence based practice and appropriate diagnostic testing procedures Report diagnostic test results to ISDH through use of the DAE form, regardless of hearing status (more on this ) Assure (in conjunction with PCP/ pediatrician) that coordination of care occurs Audiologists & EARS DAE The percentage of DAE forms submitted electronically by audiologists (as compared to those submitted by EHDI staff those faxed, scanned, etc) is 91% Audiologist s role Make appropriate recommendations for consultations (ENT, genetics, ophthalmology, etc.) based on individual baby s needs Provide input regarding EHDI process, opportunities for improvement Reporting Audiologists are asked to report children with diagnosed hearing loss to ISDH The Diagnostic Audiology Evaluation (DAE) form has a dual purpose: 1. To report follow up results to EHDI 2. To meet the reporting requirement as indicated above to ISDH s Indiana Birth Defects and Problems Registry 7

8 Reporting It is very important we receive timely reporting of the DAE The use of temporary conductive should be used sparingly if you have normal test results but a flat tympanogram, please report as normal If you report temporary conductive, please comment Reporting When results are undetermined, do submit a DAE but please comment If sending to PCP or ENT, please schedule a follow up fairly soon (so babies do not get lost) If a family no shows or if the family has noshowed on more than one occasion please contact us and we can assist the families with rescheduling if you cannot Reporting Please schedule follow up appointments in a timely manner. To meet EHDI timelines, please do not wait >3 months to bring a baby back for additional testing WHAT IS EARS? EHDI Alert Response System Web based data system Integrated into the Integrated Data System (IDS) CF EARS NBS Sickle Cell INSTEP Data & Statistics IDS Vital Records IBDPR Epi Resource Center EHDI Alert Response System (EARS) As you know EARS is a web based application that: Allows hospitals and audiologists to enter information directly into the database Allows Indiana EHDI staff almost instantaneous access Generates alerts and informs the appropriate EHDI staff member of the necessity for follow up action Why was it created? To improve Follow up on babies Not screened Not passing UNHS At Risk for delayed onset of hearing loss Communication among Hospital staff EHDI staff Audiologists Guide By Your Side & Families First Steps System Points of Entry 8

9 Why was it created? To Improve: Data reporting capabilities Monitoring successes and areas of concern Report to funding agencies to ensure program is sustainable EHDI Alert Response System (EARS) Currently an independent database within the ISDH Gateway Other applications within the Gateway include INSTEP used to track and catalog Vital Records, Birth Certificate information, Heelstick results, etc. EARS is in process of being integrated into INSTEP 9

10 State Agencies Serving Deaf and Hard of Hearing Children First Steps ISDH/ EHDI CDHHE EHDI First Steps Part C/Early intervention (birth to 3) DT, PT, OT, Speech, Audiology Center for Deaf and Hard of Hearing Education (CDHHE) Liaison between Department of Education, ISDH, FSSA, and ISD Serves birth to school exit So how did IN do? Data 2013 INDIANA 2013 DATA Total births 84,042 Total screened 81, % Total Did Not Pass 2, % 10

11 Data 2013 Data 2013 Final Status of Children Who Did Not Pass UNHS (N=2,277) Passed/Normal hearing 1, % Diagnosed Hearing Loss % In Process % Other (Deceased, Moved, Refused) % Lost to Follow Up (Unable to contact) % Parents Contacted but Unresponsive % EVALUATION AGE (Children who DNP UNHS w/ Dx report on file) First evaluation Mean age 2.01 months (61 days) First evaluation Median age 1.53 months (46 days) Diagnosis Mean age 3.27 months (98 days) Diagnosis Median age 1.93 months (58 days) Data 2013 Data 2013 DIAGNOSED CHILDREN REFERRALS TO PART C (N=155) Enrolled in Part C % Enrolled in Non Part C 1 0.6% Declined/Moved/Died/Not Eligible % No known services % Total Children Diagnosed with Hearing Loss in 2012 (N=309) Born in 2013 and DNP UNHS 155 Born in 2013 not included in above (out of state births or passed UNHS) 14 Born before 2013 but diagnosed in EHDI and EARS Work Children identified with a permanent hearing loss through an EARS alert by the F/U Coordinator are sent to the GBYS Coordinator within 24 hours The F/U Coordinator sends both the parents and the physicians the tool kits on the same day GBYS contacts families within one day EARS Works EHDI staff contact parents and PCPs within 10 days of a baby not passing his/her NBHS Direct referral to diagnostic audiological evaluation from birthing center Timely diagnosis of hearing loss Appropriate referral for intervention 11

12 (H)EARS Challenges Matching incoming data Vital Records, NBS, EHDI, etc Managing the high number of alerts but can triage among staff Training hospital and audiology staff to enter all appropriate information (i.e., PCP not attending physician, phone # for families, , etc) (H)EARS Successes Improved accuracy and reporting (direct data entry) Increased timeliness of data sharing, contacting families, PCPs, audiologists, etc. through direct data entry and alerts Reduced loss to follow up and documentation of children Easy to access, paperless, active system that works for the user (H)EARS Successes (H)EARS THE REAL CONCLUSION Improved documentation of follow up activities through ELF form, responses, and notes sections Foundation for other Newborn Screening applications Future direction We still have work to do! Better/more data on outcomes and intervention Evolution of technology HIT Reduce loss to follow up Find better ways to communicate with families ipads Text Improving the 6 Indiana has a new procedure for gaining more information regarding EI (CDHHE, First Steps, etc.) MOU between EHDI and CDHHE has been executed How we will implement this data sharing is still in the development stage 12

13 Contact: Rebekah F. Cunningham, Ph.D. Director, EHDI Program