Public Meeting Notice  May 14, 2018 meeting of the Universal Newborn Hearing Screening Program Advisory Committee

Quorum was reached for this meeting – 5/14/18

Appointed members present: Kathy Manfield, Jennifer Fleming, Marly Kenna, Christine Majeskey, Sarah Stone, Marty Lapointe-Malchik, Joan Rafferty, Delvina Labrecque, Jennifer Bentley and Jane Stewart

Appointed members not present: Aimee Knorr, Michelle Eisen-Smith

UNHS Staff in attendance: Martha Morris

Others in attendance: Lauren McGrath, Todd Higgins, Suzanne Gottlieb, Elaine Gabovitch, Mary Katherine Weatherby and Cheryl Glovsky

Materials distributed:

1. Agenda
2. Draft minutes from January 22, 2018 meeting
3. Seminar announcement “Trauma Informed Care: Providing Evidence-Based Services for Deaf and Hard of Hearing Children and Families”
4. Research article “Age and Other Factors Affecting the Outcome of AABR Screening in Neonates”, Hospital Pediatrics
5. Article “Dually Diagnosed: Autism and Hearing Loss”, ASHA Leader
6. Article “Implementing Family-Centered Care in Early Intervention for Children with Hearing Loss: Engaging Parents with a Question Prompt List (QPL)”, The Hearing Review
7. Flyer for Shared Reading Saturday
8. Save the Date card for Clarke’s Mainstream Conference
9. Massachusetts Early Intervention Home Visit flyer
10. Starting Points for EI Service Coordinators Deaf and Hard of Hearing
11. From the Roots Up A Family’s Journey Through Services for Children who are Deaf and Hard of Hearing, DRAFT

Welcome and Introductions: Kathy Manfield, Chair, welcomed the group and introductions were made.

The meeting notes from January 22, 2018 were provided and a motion was made by Christine Majeskey to accept them. Jennifer Fleming seconded. The committee voted and it was unanimous.

Parents Interacting with Infants, Updates from Early Intervention: Joan Rafferty, Director of Specialty Services, Early Intervention provided updates from EI. Joan described her role as Specialty Services Director, reviewed the OSEP requirements and the state systemic improvement plan. Social/emotional outcomes are a priority of Massachusetts EI. Joan described the PIWI model (Parents Interacting with Infants). The philosophy is based on the idea that young children learn best in familiar routines with people who love them. Family routines are embedded into therapy. 2 full days of training were required of all EI staff and is now part of the Foundations training for all new hires. The training was also offered to Perkins and to DHH Specialty Service Providers. It was noted that Kathy Manfield is one of the trainers. Joan also reminded attendees that there is no limit for co-visits between EI and specialty service providers. A new IFSP was put into place in March.

Finalized Massachusetts Universal Newborn Hearing Screening Program 2016 Data: Martha Savaria Morris, Epidemiologist, Universal Newborn Hearing Screening Program presented the data. Martha reminded the audience that the ultimate objective of Early Hearing Detection and Intervention is for all children with hearing loss to be receiving EI services by 6 months of age. A poster presented by Boston Children’s Hospital at the national EHDI meeting discussed the results of a national survey asking if audiologists were directly referring to EI. Only 54% of Massachusetts audiologists that responded indicated that they did. Historically, the UNHS audiological diagnostic form included a box to check if EI was discussed with the family. We have discovered that if the audiologist discussed EI with the family they were significantly more likely to become enrolled in EI. To help achieve the goal of enrollment into EI by 6 months, a new audiological reporting form was released that asks if the audiologist directly referred to EI. Audiologists are in a unique position in that they have the family directly in front of them. Although the program can call the family and send letters, there is no guarantee that the message will be received.

Massachusetts continues to screen 99.5% of births. Of the 588 that results were not received of a hearing screening, 245 babies were deceased and an additional 230 were born at home. Martha discussed the considerable effort it takes to ensure complete and accurate data in the birth certificate. She shared that the lost to follow up rate for diagnosis dropped to 3.2%. And, almost 90% of refers received a diagnosis by 3 months of age. Strides are being made in timely identification but timely enrollment into EI remains a goal for our program.

Update on CMV Screening and discussion: Jennifer Bentley and Lauren McGrath discussed the findings from their CMV testing pilot. Babies that did not pass their hearing screening were referred for CMV testing. In 2018 the Brigham identified one baby with CMV and BI has not identified a baby with CMV since 2015. There was discussion regarding universal screening vs. targeted screening. There was also conversation regarding the availability of blood spot testing and the pros and cons of saliva and urine. Timeliness of treatment was discussed. The CMV & Hearing Multicenter Screening (CHIMES) Study was discussed.

Universal Newborn Hearing Screening Program Update: Sarah Stone provided program updates. The program offered 2 webinars over the winter, one with Dr. Kris English on question prompt lists and the other with Lucia Sumner on Language Acquisition for the Bilingual Child. Massachusetts was well represented at the national EHDI meeting, and members of the Advisory Committee attended, including Jane Stewart, Kathy Manfield, Jennifer Fleming and Sarah Stone. Martha Morris also attended from UNHS. The annual parent forum was held in the spring and the focus was on education. Various social events were held. Beth Israel and the Brigham agreed to pilot an app with families whose baby did not pass the hearing screen. This app will walk families through the diagnostic and intervention processes. This project is part of the work being done by EHDI PALS. The tree was briefly described and the work of the learning community, including Jane Stewart, Kathy Manfield, Joan Rafferty and Melissa Dowler was acknowledged. Sarah and Joan also presented at the EI Conference with a team of specialty service providers.

Jennifer Bentley made a motion to adjourn. Christine Majeskey seconded, and the committee voted unanimously to adjourn.

1. Welcome and Introductions: Kathy Manfield, Advisory Committee Chair
2. Meeting Business
   • Meeting notes from January 22, 2018
3. Parents Interacting with Infants, Updates from Early Intervention: Joan Rafferty, OTR/L, CEIS, Director of Specialty Services, Early Intervention
4. Finalized Massachusetts Universal Newborn Hearing Screening Program 2016 Data: Martha Savaria Morris, Ph.D., Epidemiologist, Universal Newborn Hearing Screening Program
5. Update on CMV Screening and discussion: Jennifer Bentley, Au.D., FAAA, Beth Israel Deaconess Medical Center
6. Universal Newborn Hearing Screening Program Update: Sarah Stone, Director, Universal Newborn Hearing Screening Program
7. Adjournment