Finding Lost EHDI Babies The Answer May Be

Finding “Lost” EHDI Babies The Answer May Be Right in Front of You Doug Dittfurth Texas Department of Assistive and Rehabilitative Services (DARS) Office for Deaf and Hard of Hearing Services (DHHS) Christine Watkins, MA, CCC-SLP Texas Department of Assistive and Rehabilitative Services-Division for Early Childhood Intervention (DARS-ECI) Felicia Chase Goodman, MPH OZ Systems Texas Early Hearing Detection and Intervention

Presentation Overview Participants will learn: 1. HIPAA and FERPA compliant strategies for linking birth facilities, audiology providers, and Part C; 2. Strategies for identifying community resources to increase the number of infants reaching early intervention by six months of age; and 3. Strategies for increasing the number of infants with documented services.

Hearing Loss in Texas Prevalence (based on Finitzo, Albright and O’Neal, 1998: the Sounds of Texas Pilot Project) • About 3 babies a day in Texas are born with a hearing loss. • Affects about 3/1, 000 newborns - over 1, 000 babies a year in Texas.

Texas’ Newborn Hearing Screening Law House Bill 714 In 1999, the 76 th Legislature established the statewide Newborn Hearing Screening Program – TEHDI.

TEHDI – Hospital Certification Hospitals are required to: • Offer hearing screens to parents of all newborns; • Report data using e. SP™, a web-based information system; • Achieve consistent high performance; • Provide communications to parents and providers; • Obtain parental consent to report individually identifying information.

TEHDI - Exemptions HB 714 Exemptions • Rural hospitals operating in counties with a population of 50, 000 or fewer. • By Texas Department of State Health Services (DSHS) rule, exempt facilities must refer infants to another hospital for initial hearing screening.

The TEHDI process Follows the CDC’s 1 -3 -6 Guide • Babies who miss or do not pass the hearing screening at birth should be referred for an outpatient follow-up screening. • Babies who do not pass the outpatient follow-up screening should be referred to an audiologist for a full audiologic evaluation. • Babies who do not pass either the outpatient follow-up OR the audiologic evaluation should be referred to Part C.

Texas Reporting Requirements • TEHDI law & rules – Require reporting to Department of State Health Services (DSHS) TEHDI program with parental permission by all who see the baby: • • Birth screen Follow up care Audiological testing/hearing aid fitting Early Intervention

Texas Reporting Requirements (continued) • Birth facilities report to TEHDI using e. SP™, the web-based information system • Outpatient Providers and Audiologists can report to TEHDI – Using e. SP™ – By faxing the Texas Follow-Up and Intervention form to TEHDI

TEHDI CASE MANAGEMENT (CM) • TEHDI CM sends letters to babies needing follow-up at 21 days after hospital discharge. • If no follow-up info is obtained by TEHDI CM by 28 days after discharge, a phone call is made to the family. • If no follow-up info is obtained by TEHDI CM by 35 days after discharge, a second phone call is made.

Program Challenges

2005 Birth Screen Data • • 344, 392 babies reported by facilities 342, 949 needed screening 338, 246 (98. 63%) were screened at birth 10, 767 (3. 14%) needed follow-up (refers and misses) • TEHDI Case Management contacted 8, 593 families

Program Challenges Lost to Follow-up • In 2005, for the 54% of infants with reported follow-up information in 2005 – 81% were cleared of hearing loss – 19% needed further audiologic assessment • DSHS lacked outpatient information on more than 46% of babies.

The Rest of the Story - 2005 • 1, 071 (19%) needed an audiologic evaluation • TEHDI knows of 562 infants who received an audiologic evaluation • And TEHDI knows that 125 had a unilateral or bilateral hearing loss • Texas expects 400 -800 infants to be born annually with hearing loss

Program Challenges While the law mandates that birth facilities screen newborns, there is not currently a way to enforce reporting by outpatient screeners and audiologists.

Texas • • • Second in Land Area Second in Births Vast Distances between Communities 1, 254 Mile Border with Mexico 3 of 25 biggest cities

Public Health Regions in Texas

Screening Coverage

Families’ Counties of Residence

Opportunities: Finding the Lost Babies

What was Needed? • Additional resources in the communities where families live • Improved audiology and Part C provider knowledge and access to infants to support timely identification and referral

What was Needed? (continued) • Access for rural (exempt) birth facilities – In 2004: 41 rural hospitals referred infants to larger hospitals and did not report. • Support to families at important transition points

Meeting the Needs: Additional Resources in the Community DARS DHHS Resource Specialists Departmen t of Office for Dea Assistive f and Rehabilitat d of and ive Har Hea ring

Meeting the Needs: Audiology and Part C Provider Links Enhancements to the TEHDI information system, e. SP™ to facilitate: • entry of outpatient screening and diagnostic results, • referrals to Part C, and • reporting of Part C enrollment status.

Meeting the Needs: Rural access and Support to Families • Increase efforts to provide access to the TEHDI information system to rural facilities – Today, of the 41 birth facilities not reporting to TEHDI in 2004: • 34 are either using or training to use e. SP™ • 7 do not screen and refer to other facilities • Support to Families - Increased referrals to Part C

DARS DHHS Resource Specialists: • Provide specialized services to individuals who are deaf or hard of hearing and assist agencies and other service providers in serving these consumers.

DARS DHHS Resource Specialists: Help consumers in getting the services they need from state and local government, service organizations, employers, and private entities while advocating within their communities to remove communication barriers.

DARS DHHS Resource Specialists: Serve as liaisons between consumers and service providers to ensure appropriate provision of services.

WHY DARS DHHS Resource Specialists? • Existing Resource – Knowledgeable – Dedicated – Located across Public Health Regions

What DARS Resource Specialists Do: Extended Case Tracking Work with birthing facilities, outpatient providers, and audiologists to: • Find babies who still need services • Connect those babies with providers

What DARS Resource Specialists Do: Extended Case Tracking 1. Call birth screen facilities – Did you perform the OP screening? • • What were the results? If you referred elsewhere, where did you refer?

What DARS Resource Specialists Do: Extended Case Tracking 2. Call OP screeners – What were the results of the OP screening? – Refer to Part C when appropriate!

What DARS Resource Specialists Do: Extended Case Tracking 3. Call Audiologists – What were the results of the audiologic assessment? – Refer to Part C when appropriate!

The GOAL of Extended Case Tracking: • Increase the number of babies with documented services. • Increase the number of infants enrolled in early intervention services.

How Are We Doing?

Successes • Increased reporting of diagnostic results – So far, for 2006, we know diagnostic results for 743 babies born in 2006 – Of those, we know that 222 had a unilateral or bilateral hearing loss, almost double the number in 2005. • Resource Specialists are educating providers

Successes • Increased communication among providers • More birth screen facilities are also performing follow-up screenings • Identification of challenges faced by birth facilities

Opportunities and Next Steps • Give the Resource Specialists MORE TIME • Find additional resources in PHRs with high population densities – Small grants – Colleges and Universities

Opportunities and Next Steps • Increase the use of existing resources in the community to help alert more providers – Personal visits – Knowledge of community resources

Opportunities and Next Steps • Educate Providers – Hospitals should report outpatient results and/or referral information to TEHDI – Outpatient Providers/Audiologists need an incentive to report follow-up results to TEHDI

Opportunities and Next Steps • Increase education and public awareness efforts aimed at parents and service providers at all levels (Birth screen facilities, outpatient providers, audiologists, PCPs)

Opportunities and Next Steps • Further enhance e. SP™ for use by audiologists and Part C providers • Give audiologists incentives to report – Provide the tools they need to refer to Part C – Ease of web-based reporting • Give Part C providers ability to receive referrals from audiologists via e. SP™ directly.