AFA's Demands. EHDI's Response.

One other letter was brought to my attention just now and due to the nature of recent debates on AFA (Audism Free America) and EHDI (Early Hearing Detection & Intervention) I thought I'd share this one with you. This one was written some time in Janyary 2012 and is older than the earlier one I posted. That is what makes it even more interesting. Before I published this one I asked Karl White for permission to share it with you and he did not have a problem with that.

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Dear AFA Representatives:

Thank you for your letter of January 3, 2012. We are happy to meet with you to discuss ways of improving Early Hearing Detection and Intervention (EHDI) programs. The National EHDI Meeting is a busy time for the three of us and there is not a time on Sunday, Monday or Tuesday when all three of us are available for an hour. Therefore we invite you to meet with us on Saturday afternoon from 4-5 PM. Given that the pre-sessions for the Meeting start on Sunday morning and there are several affiliated meetings on Saturday, many people are planning on arriving at the hotel on Saturday afternoon, so we thought that might be a convenient time. If it would be better for you to meet later Saturday evening (perhaps from 7:30-8:30 PM), we could also do that.

To make the meeting as productive as possible, I thought it would be useful to provide some initial feedback to your demands.

First, it is important to clarify that EHDI is not an organization or program within any Federal agency. The Maternal and Child Health Bureau (MCHB) and the Centers for Disease Control and Prevention (CDC) are federal agencies with the US Department of Health and Human Services that administer competitively award grants, contracts, and cooperative agreements. A small part of each agency’s work is to promote Early Hearing Detection and Intervention (EHDI) programs. Competitive awards have been made in the past by each agency to departments of health, universities, associations, and others to assist with the development, operation, and improvement of EHDI programs. Every state and territory has organized one or more program(s) to assist with the provision of newborn hearing screening, diagnosis, intervention, family support, and health care programs. Some of these programs are assisted with federal money, but most of the financial resources for these programs come from other sources (e.g., school districts, hospitals, insurance proceeds, private pay, charitable gifts, etc.). The people who are providing services to children and families in all of these areas work under a variety of circumstances -- including state employees, private practitioners, school districts, private organizations, volunteers, etc. NCHAM is one of the grantees and receives funding from MCHB to serve as the National Technical Assistance Resource Center for EHDI Programs.

Now that you understand that EHDI is not an organization or agency that establishes requirements for how various activities are done, and that the vast majority of funding for EHDI programs come from non-federal sources, you can see that we are not in a position to comply with your demands. I will however, comment briefly on each one (quoted below from your letter) to begin a conversation of how we might be able to work cooperatively to continue to improve EHDI programs.

Demand #1: Equitable funding. AFA calls upon EHDI, CDC, NIH, and US Dept of Education to address the historical and contemporary inequality of funding by increasing funds for bilingual (ASL and English) materials, early educational programs, Deaf mentoring programs, and services to parents. AFA cannot condone funding of any oral/aural only program as in compliance with a Deaf child’s human right to sign language, and governmental bodies such as EHDI that have professed a mission of ‘appropriate’ intervention services have, in practice, promoted services which focus almost exclusively on speech, medical and audiological services. Equitable funding should be transparent. (Relates, in part, to EHDI goal #3. Please note also that nowhere in the 2012 Conference is there a presentation which has ASL in the title).

Funding administered by MCHB and CDC is competitively awarded based on federal procurement regulations and Congressional direction. All funding opportunities are announced in advance through established sources such as www.grants.gov. Proposals from AFA or any other organization that meets the eligibility requirements for the various funding programs and is interested in improving EHDI programs are accepted. All proposals are objectively evaluated by a panel of experts who affirm they do not have any conflict of interest with the applicant.. Please note that Congress limits the authority of CDC for funding agreements for State agencies. Almost all federal funding that has been focused on improving EHDI programs over the past 10 years has gone to State Departments of Health or Universities and I know of no grants, cooperative agreements, or contracts from the MCHB or CDC EHDI programs that have gone to support an "oral/aural-only program." With respect to your claim that there are no presentations at the 2012 National Meeting with ASL in the title, please note the following sessions:

Topical Session 4: Jeffersonian Room: 'Massachusetts Family Sign Language Program: A Model for Effective Family-Centered Sign Language Instruction'

Topical Session 6: Frisco Room, 'Spoken English and American Sign Language: The Best of Both Worlds.'

More importantly however, almost all of the break-out sessions are organized based on proposals for abstracts submitted by people who plan to attend the conference. If you think there should be more sessions about ASL in the future, it would be good for you to encourage people to submit such proposals. All proposals are reviewed by a committee of experts (including people from the Deaf community) and approximately 85% of submitted proposals were accepted this year.

Demand #2: Early Healthy Deaf Identification. AFA calls upon EHDI to shift its approach to Deaf infants and their families from a pathological/medical bias to a positive/culturally-additive model in identification. To ensure this, parents need to be informed at the time of identification that American Sign Language is a linguistic human right for a Deaf child and Deaf/ASL early service providers are trained to work with them. In addition, EHDI should implement the labeling/way of thinking that was published in EHDI's 2011 Resource book in the chapter on Partnerships with the Deaf Community. (Relates to EHDI’s overall mission as well as Goals #2 and #3).

As noted above, there is no central control of the EHDI programs that are operated by states and territories, nor of the hospitals, health care providers, and schools that provide services to children who are deaf or hard of hearing and their families. MCHB, CDC, and NCHAM have all worked to encourage all programs and people involved in EHDI to ensure that families are provided with complete and objective information, that family choice is supported, and that all services are provided in a way that is culturally appropriate and respectful. I agree that every family with a child who is deaf or hard of hearing should know that ASL is an appropriate option for communicating with their child. EHDI programs have been and will continue to be encouraged to make such information available to families.

Dedmand #3: Stakeholders in Leadership Positions. AFA calls upon EHDI to hire Deaf people who use and support ASL/Deaf Culture in leadership roles at national and state levels. (Relates to EHDI’s National Goal #7)

I believe both MCHB and CDC will continue to encourage all programs who receive competitively awarded federal funding to make concerted efforts to hire qualified Deaf people who use and support ASL/Deaf Culture and others who have disabilities or who come from typically under-represented minorities. This has been the case in the past and will continue to be the case in the future.

Demand #4: Full Disclosure. Audiologists should be required to explain the four international documents and their positions on the language and cultural rights of Deaf people. Also, they need to explain the recalls (both voluntary and involuntary) and risks associated with cochlear implants and Auditory-Verbal Therapy (AVT) programs. (Relates to EHDI’s National Goal #5)

Most audiologists who do diagnoses for infants and young children do not work for either the federal government or for state-based EHDI programs. Thus, it is impossible to mandate what they say or do not say to parents. I agree with you however, that all health-care providers who work with families of children who are deaf or hard of hearing should provide families with complete, objective, and relevant information that will help the family make informed decisions about the care and education of their child. State-based EHDI programs are in a position to educate health care providers and to encourage them to provide appropriate information. I hope your organization will work with state-based EHDI programs to help them understand what kind of information is needed by parents. Please understand that Federal agencies may not impose additional administrative requirements except those that have been codified in regulations published in the Federal Register or are provided in authorized Congressional language.

Demand #5: Confidential Information and Genetic Research. AFA calls upon EHDI to guarantee that information about Deaf children and their families will not be used for collecting genetic information beyond consults with the families. EHDI will not support financially nor in terms of information sharing any research related to genetic engineering. (Relates to EHDI’s National Goal #6).

To the best of my knowledge, the MCHB and CDC programs that are supporting EHDI initiatives have never collected genetic information about children who are deaf or hard of hearing. All grantees must comply with all federal and state laws and privacy regulations dictated by HIPAA, FERPA and IDEA.

It is possible that the proceeding information will make a face-to-face meeting unnecessary. But, if you would still like to meet, and can do so on Saturday afternoon or evening, please let us know as soon as possible so that we can secure a room and arrange for an interpreter. We hope you are planning to participate in the 2012 National EHDI meeting so we can all work together to continue to improve EHDI programs.

Sincerely,

Karl White

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Now this begs the question. Did AFA understand Karl's letter from January? If they did, why then did they stage a protest rally at EHDI's conference in St. Louis?

And since it happened I am left with no option but to wonder if these AFA leaders were scholarly intelligent enough to understand his letter. To be honest with you I have doubts about that and I meant no offense to anybody. However based on what Karl White tried to explain in that letter I just can not envision a protest rally happening afterwards.

There seem to be only two remaining possible explanations left. One, they didn't understand the letter so they rallied a protest anyway. Two, they understood the letter but did not know how else to contribute so they rallied a protest anyway.

Personally, I have known these AFA leaders for close to four years now. Each time I tried discuss various matters with them they would avoid it at all cost. They booted me out of DBC because I was a natural strategist and a critic. They walked out of DeafVideo.tv because they could not tolerate people who saw things differently. They walked out of DeafRead.com because they didn't like the openness of dialogues that took place there. Come to think of it, these AFA leaders has refused to debate directly with many of us. Instead they would run into their own blog sites, which gave them the desired control, allowing for statements that favored their view and blocking statements that didn't.

They're using the same tactics here with EHDI by protesting around the buildings and refusing to participate as a registered agent. The truth seem to boil down to their deficiencies in understanding and using academic languages rather than using their social language, that of protesting.

Think about it, people with academic language deficiencies relies heavily on their social language, that of protesting. Is it the reason why AFA leaders were afraid of participating in these EHDI meetings? Your thoughts on that?