The 2018 Annual Early Hearing Detection and Intervention (EHDI) Conference

By Jennifer Fleming, Special Projects Coordinator, Universal Newborn Hearing Screening Program

EHDI Conference_logoAs a parent of two children, one born profoundly deaf, I was proud and excited to head to Denver, CO to the Early Hearing Detection and Intervention (EHDI) Conference held on March 18th – 20th. This is a terrific conference that brings together parents and professionals from different states to share their experiences and learn from one another. We are all tied together by a common goal — to improve the lives of deaf and hard of hearing children everywhere.

The first time I went to EHDI was several years ago when the conference was in Louisville, KY. I went as a parent representative on scholarship from the Universal Newborn Hearing Screening Program (UNHSP). I remember being so honored to be going and humbled by how much there was to learn. It was fun to attend different sessions of interest to me. I was so impressed with everyone I met, and remember being struck by how lucky we are in Massachusetts to have a wealth of supports and services for our deaf and heard of hearing kids. I met many parents from other states who told me how they wished they had similar places to turn for support.

This year was even better than before. There were five parents sent this year from the UNHSP. It was great getting to know the other MA parents and learning from them. They are all simply terrific. There was an event held the first night to help connect parents across the country, which turned into a dance/activity night. Putting my pride aside, I acted out the moves as best I could. I do wish I had brought other shoes (flats or tennis shoes preferred) – but that seems a pretty minor detail! Part of our group continued on afterwards and had fun sharing stories and experiences as parents of deaf and hard of hearing children. We could have talked all night long.

Jenifer_flemingIndividuals from Massachusetts presented at two sessions and had two poster presentations as well. Our own Dr. Amy Szarkowski from Children’s Hospital Boston presented at the opening session on day two. I was especially proud to co-present a session with Sarah Stone, the Director of the UNHSP. Our session was titled “Family Involvement and Leadership: Pathways to Success for Families with Children who are Deaf and Hard of Hearing.” I was extremely nervous to be sure – particularly when the powerpoint would not load in the room 30 minutes before the session! Thanks to the computer experts on hand (who I profusely thanked after the presentation), we were all set and ready to go when our time came. We presented what you, as parents, already know. Families who are engaged/active/involved have children who thrive. In our presentation we defined what family engagement is, gave examples, and talked about leadership opportunities. The importance of family is key. Our state does really well in part because the parent and family perspective is so included and valued. Our state works hard to encourage, support, and develop parent leaders to make positive changes in our state and beyond. I can personally speak to this and am grateful for the opportunities that I have been given.

So, as I reflect on the conference this year I think about the importance of family. It is all about working together as centered around the family and our children. I was struck by one parent presenter sharing that by the time her daughter was 10 years old, she had worked with 34 different professionals related to her daughter’s hearing loss. This speaks to the power of the parent: both the knowledge that they have of their unique child and their knowledge of the systems that serve them. There is tremendous power in each one of us to harness this for the good of our children.

Conference highlights and presentations can be found at www.ehdimeeting.org. The national EHDI website can be found at www.infanthearing.org. Our state website is brand new as of march of this year. Please take a look!

https://www.mass.gov/dph/newbornhearingscreening

If you would like to learn more about EHDI or have an interest in getting more involved, please feel free to reach out to our program or contact me directly at jennifer.fleming@state.ma.us.