VIDEO DESC & TRANSCRIPT: Tawny Holmes is standing in the NAD Headquarters lobby. The NAD logo appears on bottom right corner as a watermark.
TAWNY: I recently attended several Congressional meetings because the Early Hearing Detection and Intervention Act of 2017 (EHDI) is up for reauthorization and discussion. The reauthorization process tends to happen about every five years. Right now, bills to reauthorize this law have been presented in each of the two parts of the U.S. Congress, the Senate and the House of Representatives. The U.S. Congress has two parts, one is the Senate and the other is the House of Representatives. The Senate has two elected officers for each state, so it has a total of 100 Senators. The House of Representatives has a different number of representatives per state, depending on the size of your state’s population. The House has a total of 435 representatives. Currently, different bills to reauthorize the EHDI Act have been introduced in each of the two parts of the U.S. Congress. The submissions of these two bills took us by surprise because usually a bill is submitted with one part of Congress at a time, and that allows us to focus our efforts. Then when the bill passes that part of Congress it goes to the other part, and we can work with the other part of Congress at that time. However, this isn’t the case right now. We need to do double duty in both parts of Congress for two bills that are pending at the same time. Now, why are we concerned? Senators and Representatives were working on writing their bills before the bills are sent to a committee. As they thought about what to put in this bill and how to improve the law that provides early services for deaf and hard of hearing children, they asked audiologists, speech therapists and doctors. However, they did not ask the NAD or the deaf or hard of hearing community for advice or suggestions on what to add. This is not acceptable. Deaf and hard of hearing people must be involved because this bill is about deaf and hard of hearing children! We recommend changes to the law, and we need your support for these recommended changes to improve how the law benefits deaf and hard of hearing children. Under EHDI, there has been a long history of situations where families that learn of their babies being identified as deaf after a screening will go to audiologists for confirmation. Once this happens, the families get a lot of information that focus on speech services and auditory therapy. They do not get enough information about sign language or deaf culture information. You already know that through your own experiences. We must seize this opportunity to improve the law, and we can do it! We must contact the Senate and the House of Representatives. There are three changes that we recommend. First, EHDI stands for “Early Hearing Detection and Intervention.” However, if you look up “intervention” in an English dictionary, it has a negative meaning that means to “interfere” with a bad situation, such as stop a fight or provide therapy to resolve a problem. That does not reflect the need to positively address the needs of deaf and hard of hearing children. Deaf and hard of hearing children can lead wonderful lives, as long as they have early and rich language access. So, “intervention” is not what we need for deaf and hard of hearing babies. We need to use “Early Language Services” instead. This change will reinforce and remind people who working with deaf and hard of hearing children that deaf and hard of hearing children need language to succeed. We all have a responsibility to provide language to deaf and hard of hearing babies. Currently, in the USA, 85% of families with deaf babies are using spoken language to communicate with the deaf babies. This happens because they get very limited information about the benefits of sign language. They also get very little support to do so. Families naturally decide to focus on speaking as it is what they use. As the deaf baby grows up, the child does not often indicate strong language skills. Unfortunately, such language gaps are very common as a result and has continued over the years. The second change is about inappropriate medical terminologies used such as: “diagnosis” which is what doctors use to explain what is wrong with you; or “treatment” which is what doctors use to determine how to cure you of something. Deaf and hard of hearing people are not cured by technology such as hearing aids or cochlear implants. We still have the experience of being deaf and hard of hearing, whether we use such technology or not. Instead, we recommend “identification” to confirm that “the baby is deaf or hard of hearing,” and instead of “treatment” we recommend “referral to services.” As for the third recommended change, the EHDI law has a provision that gives millions of dollars to the Centers on Disease Control and Prevention (CDC), a federal agency, to study the spread of diseases and how to stop them. An example is the Zika virus. That is the purpose of the CDC, and somehow this agency is also responsible for collecting data on deaf babies. The deaf and hard of hearing community have expressed objections to this as we do not consider being deaf to be a “disease.” The rationale given for including the CDC in the EHDI Act is that the CDC is well known for data collection. While it is true that the CDC is designed for data collection, employees of the CDC are not members of the deaf and hard of hearing community and are not familiar with deaf culture or the language needs of deaf and hard of hearing babies. As a result, the CDC is not equipped to properly assess anything beyond identification. The money given to the CDC should be moved to an agency or entity with expertise in researching the language acquisition of deaf and hard of hearing children. These are the NAD’s three recommendations for amendments to the bill. You can help! Send a letter to your Senators and House Representatives because there is a bill now in both parts of Congress. The Senate bill is marked as S. 652, and the House bill is marked as H.R. 1539. We need to tell them not to support these bills until the bills include amendments from the deaf and hard of hearing community. We must let them know now. We have a sample letter ready for you to use. You also can send a video of yourself sharing your experience with EHDI. It can either be a struggle or success story about getting language services. If you send a video, please include an explanation in English. We must bombard these Senators and Representatives with our letters! By doing that, we can influence these legislators to change the law and make sure deaf and hard of hearing children get the language services they need. Thank you.
Video fades to a soft white background with several different font types showing “NAD” very quickly. Copyright video ends with the National Association of the Deaf (NAD) logo centered. Blue text below the logo appears, “A production of the National Association of the Deaf (copyright) 2017 All Rights Reserved”.