Dear Dr Lu,
Thank you so much for the time your team and you took to meet with the representatives of California Association of the Deaf and Language Equality and Acquisition for Deaf Kids (LEAD-K). It was a very productive discussion.
Sheri Farinha and I are looking forward to collaborative efforts with you to bring more Deaf stakeholders onboard to work within the EHDI system. I appreciate that we have shared the following two points during our meeting:
The single greatest risk faced by deaf people is inadequate exposure to a usable first language” (Sanjay Gulati, a Deaf psychiatry professor at Harvard Medical School).
NCHAM must refrain from doing further harm by disengaging with entities that have ideological bent.
Our CAD team has gathered information to share with you, which we can discuss about during our upcoming meetings. Those are the current issues which needs to be changed or improved. The information with our concerns outlined is attached below the letter.
I look forward to our next meeting to make EHDI more inclusive of Deaf professionals. Meanwhile, I look forward to meeting some of you at the EHDI conference.
Once again, thank you for the meeting. Thank you for your interest in learning more about our concerns regarding the current conditions of the EHDI system.
With deep gratitude,
Julie Rems-Smario, President
California Association of the Deaf
Point #1: Doing Harm to Deaf Children who become our Deaf Adults
A. Focus on oral-only language has robbed many Deaf children of fully accessible language and healthy social-emotional development.
B. Lack of language development could cause academic difficulties and delays.
C. Those children are generally not assessed for their language development till second- grade. We passed SB210 to require language testing of all Deaf babies and toddlers 0-5.
D. Major consequence: Deaf children arrive at Kindergarten without much or no language. Those children are thus NOT ready to learn at age 5.
E. Petersen & Rems Smario (2013) asked if Maslow took language for granted and suggested that, to accomplish each of Maslow’s hierarchy of needs, one needs language to accomplish all of the steps to self-actualization at the top.
Point #2: Goals of NCHAM are harmful for Deaf children and their families
A. The goal of the National Center for Hearing Assessment and Management (NCHAM) is to ensure that all infants and toddlers with hearing loss are identified as early as possible and provided with timely and appropriate audiological, educational, and medical intervention.
B. Language intervention is not listed as one of services provided by NCHAM.
Consequently, NCHAM’s focus on audiological, educational, and medical intervention has adverse effects on Deaf babies and toddlers’ language development.
C. Many families never learn about the extreme benefits of ASL till too late. “Parents misinformed about ‘potential and probable implications’ of not giving fully accessible language exposure early (Hall & Henner, 2015).
D. High unrealistic expectations for CIs: “it’s the only option”
Point #3: NCHAM would not include or involve Deaf adults in management of their audiological, educational, and medical interventions.
A. National Association of Education of Young Children (NAEYC) has ten program standards. Below is the description for #8 is Community Relationships:
The program establishes relationships with and uses the resources of the children’s communities to support the achievement of program goals. Relationships with agencies and institutions in the community can help a program achieve its goals and connect families with resources that support children’s healthy development and learning. What to look for in a program:
The program connects with and uses museums, parks, libraries, zoos, and other resources in the community. Representatives from community programs, such as musical performers and local artists, are invited to share their interests and talents with the children. The staff develops professional relationships with community agencies and organizations that further the program’s capacity to meet the needs and interestsof children and families. (http://families.naeyc.org/accredited-article/10-naeyc-program-standards#8)
B. NCHAM is developing ASL classes for families but has not contracted with appropriate ASL entities to develop those online ASL classes.
Point # 4: Research that does not include Deaf People and misinterprets of brain imaging research (language cortex, not auditory cortex).
A. Amateur and ideological biases in hypothesis, design, outcomes, and conclusions.
“…danger of this approach is that we can become inappropriately confident about our amateur research outcomes, reaching hasty and premature conjectures dressed up as quasi-scientific conclusions. Sometimes we rely on the opinions or knowledge of others. This is also problematic as opinions may be based on stereotypes passed down through the generations” (McNaughton et al, 2010).
B. Must include ASL-Deaf people: “Research is a process legitimated in our society as producing knowledge and therefore ought to be in the hands of those who want to use and benefit from it—particularly when it is information about our own lives.”
C. Inadequate and inappropriate research conclusion: there is a paucity of research about outcomes of their service provisions to deaf children and their families. If there is research, they usually do not include ASL-Deaf children.
D. CI Research has been highly variable and is not focused on first-language acquisition. Getting an implant does NOT equate to language access (Hall & Henner, 2015).
Point #5: Language Deprivation & Brain Damage cause lifelong difficulties, starting with their K-12 education because of “ableism.”
A. Hehir (2005) said, “…ableist assumptions become dysfunctional when the educational and developmentl services provided to disabled children focus inordinately on the characteristics of their disability to the exclusion of all else.”
B. He also wrote, “…I began to see more clearly how deeply some educational practices reflect this prejudice. Requiring deaf students to lipread rather than sign…”
C. Instead of changing shifts at Kindergarten when their language is delayed or deprived, many school programs continue on same damaging teaching patterns where their education is more focused on speech development more than on academics.
D. Their lack of academic achievement is blamed on two things: their hearing status and on their lack of language that NCHAM promotes through their mission focus of “audiological, educational, and medical interventions.” But we now know it is lack of language
E. If they are concerned about the education of Deaf infants and toddlers, how do they expect the Deaf children to be able to achieve academically without language development?
Point #6: Social/Emotional Development & Mental Health as a result of Language Deprivation
A. Deaf youth has a vicious cycle where they engage in drugs and alcohol use earlier because of language deprivation. Language Deprivation -> Difficulty Expressing Self -> Increase in Distress -> Difficulty with Coping Skills -> Drugs and Alcohol Use.
B. We are now suggesting the possibility of Language Deprivation Disorder (Hall & Henner, 2015).
Point #7: NCHAM discriminates against Deaf people.
A. Americans with Disabilities Act prohibits discrimination against deaf people.
B. There is inappropriate descriptions of our needs throughout the NCHAm website; this is not the scope of our discussion. However, to illuminate an example, from a search of NCHAM’s Resource Guide of 526 pages and 39 chapters, we can see only 43 instances of he term, “ASL” whereas the term “hearing” showed up 2939 times. The 33 times “ASL” showed up in the Resource Guide were in three chapters written by Deaf authors. Out of 39 chapters, only three were written with Deaf authors.
C. Hall, W.C. and Henner, J. (2015) Is it deafness or language deprivation? Presentation at National Leadership & Training Conference. Retrieved from:
Hehir, T. (2005). New directions in special education: Eliminating ableism in policy and practice. Boston, MA: Harvard Education Press.
MacNaughton, G., Rolfe, S., and Siraj-Blatchford, I. (2014). Doing Early Childhood Research. New York, NY: McGraw Hill.