10 Years Strong - Minnesota’s Early Hearing Detection and Intervention System Transcript
[Title slide appears]
10 Years Strong - Minnesota’s Early Hearing Detection and Intervention System
Nicole Brown; MSN, PHN, CPNP
Co-Coordinator, Early Hearing Detection and Intervention Program & Supervisor, Long-term Follow-up Newborn Screening – Minnesota Department of Health
[Screen fades and Nicole Brown appears. She is facing the camera and smiling. She begins to voice and the interpreter next to her begins to sign.]
- At the risk of sounding like an overly proud parent, I'm gonna tell you about my daughter Linnea, who, over the last decade, has become strong and proud just like the system in place for children who are deaf and hard of hearing in Minnesota. In 2006, Linnea was born with beautiful blue eyes, just like her sisters and her dad. And just like her oldest sister, she was born with a hearing loss. Of course, we didn't really know it at the time, but Linnea didn't pass her newborn hearing screening. Because of that, she went for further diagnostic testing and we learned that she had a profound hearing loss at 10 days of age. While I didn't feel it at the time, Linnea was lucky. Despite the fact that she had an older sister with a hearing loss, I was sure Linnea could hear me. Newborn hearing screening was the only reason that Linnea received that further testing and diagnosis that she needed and was identified so early. And even though her older sister had a hearing loss and I feel like I should have known because we've been through this already once before, I felt completely overwhelmed. I had so many questions. I wondered what's her future gonna be like? I didn't really know any deaf or hard of hearing adults. And I had so many questions, so I Googled it, just like any parent would do. One of the things that popped up in my Google search was learning that it was likely that Linnea would graduate from high school with a third grade reading level. I was shocked and terrified. And what about school? Would she have friends? Would she be able to play sports? And how would we communicate with her? How would I tell her that I love her? Would we need to learn sign language? Would we learn cued speech, would she have cochlear implants? Or would she do all of it? I wasn't really sure. And what about that very practical question about how am I gonna get my insurance, to navigate insurance to be able to pay for hearing aids if that's what we choose. It just felt completely overwhelming.
[A picture of Linnea as a baby wearing hearing aids appears where Nicole was standing onscreen. Nicole continues to voice off-screen. Interpreter remains onscreen.]
- Now just as Linnea was taking her first steps in 2007, and wearing her adorable little hearing aids behind her ears, a package of Early Hearing Detection and Intervention legislation was passed.
[Linnea’s picture fades and Nicole reappears onscreen. She continues to speak.]
- Over the last 10 years that that legislation has been in place, we've really built a strong system of supports for families like mine of children who are deaf and hard of hearing. Now when Linnea was born, newborn hearing screening was voluntary. Hospitals could choose if they wanted to provide a newborn hearing screening or not. Imagine if I had taken Linnea, or if Linnea was born in a hospital where they didn't do a newborn hearing screening. I really wonder when I would have learned that she had a profound hearing loss. Now, every hospital is required to screen all babies for hearing loss before they leave the hospital, unless the family chooses. They also report the results of the screening test to the Department of Health, where the Department of Health connects with primary care providers and families to help follow up on those screening results to insure that families get the diagnostic testing that they need. Now, around the time Linnea was born, the average age of diagnosis for a child who was deaf and hard of hearing was two and a half years old. Today, it's two months old. And for those of you who are around children and know, infants, their brains are like sponges, and just absorbing so much information. And without access to language, no matter what kind of language, through ASL or through spoken and listening language, whatever kind of communication, without that communication, there can be permanent delay in development. Now, parents have a lot more support to help answer the questions like I had after Linnea was born. Within days a parent guide from Minnesota Hands and Voices will contact the family. These parents are parents of children who are deaf and hard of hearing themselves, they've walked those shoes. They're trained to be able to let families know about resources and information. They're located throughout the state of Minnesota, and they even speak different languages. They connect families to resources like where teachers can come out to the house and work with infants and provide special interventions so that those babies will stay on track for development. Deaf and hard of hearing mentors that can connect them with as well. So, they can connect with adults who have been there who know what it's like to grow up with a hearing loss. And what about that very practical question I had about hearing aids and insurance? Now, Minnesota has a hearing aid loaner program where families can get hearing aids immediately for their babies so they can have access to sound immediately while their parents are working through the maze of insurance and financing. Now, after 10 years, we've really done a much better job of answering that all so very important question about what is the future like for children who are deaf and hard of hearing. Well, we're really beginning to understand factors that impact outcomes, and then doing something to improve those. State agencies are working together, such as the Department of Health, the Department of Human Services, and the Department of Education on tools such as The Early Childhood Longitudinal Data System to help show growth and achievement for our children who are deaf and hard of hearing in Minnesota. Using this important data, we're beginning to see how participation in education and social programs early on effect how children do in school later. No longer do parents need to worry about their child graduating from high school with a third grade reading level. Now we can see data about how our current deaf and hard of hearing students are doing in Minnesota, and it's really good news. Linnea turned 12 recently, a year ahead of our Early Hearing Detection and Intervention legislation. I'm not sure which I'm more proud of. Well, of course it's Linnea. She recently spoke at our 10 year Early Hearing Detection and Intervention celebration. She wrote and gave her own speech. And she ended that speech by saying, "My hearing loss has never gotten in the way of what I want to do. I'm deaf and I'm proud of it." [Nicole becomes visibly moved and pauses a bit before resuming speaking.] We have a lot more work to do here in Minnesota, but over the last decade we've really made strides in helping all children who are deaf and hard of hearing achieve great things and be proud to be who they are. Thank you.
[Ending credits appear.]
The Minnesota Commission of the Deaf, DeafBlind & Hard of Hearing for supporting the development of the TED Talks.
Talent – Nicole Brown, Jay Fehrman, Danelle Gournaris, Elise Knopf, Jody and Logan Waldo.
Interpreters – Gina Alvarado, Emory David Dively, Quincy Craft Faber