23. The EHDI Act of 2015
H.R.1344, Early Hearing Detection and Intervention Act of 2015: To amend the Public Health Service Act to reauthorize a program for early detection, diagnosis, and treatment regarding deaf and hard-of-hearing newborns, infants, and young children.
When the EHDI was originally enacted, its goal was to address deaf children’s language needs at the earliest age. In theory, this is a splendid idea. In practice, the EHDI has focused not on getting language to deaf children but almost exclusively on the medical model—on developing hearing and speaking skills. With all this emphasis on oralism, hearing aids, and cochlear implants, the goal being to mold deaf children into “hearing and speaking” approximations of hearing children while ignoring the real benefits of immediate access to ASL, we are seeing an epidemic of language deprivation in deaf children.
WTDP believes that all deaf children should have access to American Sign Language. Families should learn it. Undergoing cochlear-implant surgery should be a matter of voluntary and informed choice. There is altogether too much emphasis on medical “treatments” for deafness and not enough bout visually-accessible education as the best solution. We have seen, and are still seeing, the tragic results of this skewed emphasis—deaf people growing up without real access to ASL, with debilitating language delays. We don’t consider these people failures; we consider them having been failed by the medical model. And the effects of badly-managed “early intervention” stay with the child for years, and some may have a lifelong effect, as we’ve seen with Deaf people who were alumni of schools for the deaf during the heyday of oralism.
H.R. 1344 focuses on the medical model—audiology, listening and spoken language (LSL, which is not a language but an approach)—a model that has failed and continues to fail. Research funds are being channeled in the direction of clinics, not schools, to push children to hear and speak, not to learn and use language. The medical approach has failed on many levels. How can it promote cognitive, academic, and social skills, and self-esteem? We believe that the emphasis puts an unjust burden on the deaf child.
WTDP does not trust misinformed parents or uninformed medical professionals to make the right choices for Deaf people. Language delays and deprivation are part of our reality. Many Deaf people have grown up deprived of language. Most haven’t realized this until they’re adults.
WTDP does not support H.R. 1344, since it was devised without input from Deaf stakeholders. This bill is seriously flawed and biased. We insist on having a fair say in any matters pertaining to deaf babies and children, and in having their needs considered in any legislation governing early intervention and pre-K education.