Bobbie Beth Scoggins Keynote Address

Saturday, 28 June 2008

Title: "Early Hearing Detection and Intervention (EHDI), Deaf Babies, and Language Development: Where Have We Been and Where Are We Going?"

Dr. Scoggins began her keynote address by explaining that past efforts at identifying Deaf children after birth were called "High Risk Registries", and they typically missed identifying 50% of the Deaf or hard-of-hearing babies.

In the past, age 2 1/2 was the average age when Deaf babies were identified. Hard-of-hearing babies were identified, on average, at age 4. These statistics represent huge gaps in children's opportunties to acquire language.

Rhode Island was the first state to develop an EHDI system in 1993. This led to other states copying their system. The Rhode Island system led to what is called "UNHS", which stands for: "Universal Newborn Hearing Screening". Dr. Scoggins explained: "It's critical that you know that federal legislation has an impact on all of us," and so it is very important to learn all the acronyms that are involved.

In 2000 new federal rules that mandated that all birthing hospitals have hearing testing equipment began to be implemented through the states. James Walsh, a representative from New York was involved with creating the federal legislation.

Dr. Scoggins then discussed various research papers by Yoshingo-Itano (1998) and Moeller (2000) and then explained: "We as a community need to find a better way to interact with the medical community."

Then came a discussion of the U.S. Center for Disease Control (CDC) and how they implement the current EHDI mandates. Two important web pages on the CDC site are:

http://cdc.gov/ncbddd/ehdi/ehdi.htm <http://cdc.gov/ncbddd/ehdi/ehdi.htm>

and

http://cdc.gov/ncbddd/ehdi/nationalgoals.htm <http://cdc.gov/ncbddd/ehdi/nationalgoals.htm>

There is a dearth of information about sign language on the CDC web site! And the whole CDC program is infused with the pathological-medical view of deafness.

BBS: "Our job is to get the info out."

The CDC has what is called the "1-3-6 Plan". The goals for that plan are the following:

1 month--All babies are screened by age 1 month

3 months--Those babies identified should be referred to audiologists before age 3 months

6 months--Those babies identified by audiologists should be enrolled in early intervention programs with their families by age 6 months.

BBS (in reference to the 1-3-6 Plan): "What are we going to do about it?....Our goal should be getting involved [pointing to Power Point page] here at the age of 6 months, at the local level--the state level--and the national level." NAD is getting involved at the national level.

"NAD has been involved in myriad ways in passing EHDI and with the issue of bilingualism.....The NAD has been in an ongoing battle with the medical mindset....the NAD has been involved in trying to make an impact. They (the medical community) did not have the info (countering the pathological view) at all...Really, in essence, they were clueless...Slowly but surely we were able to infiltrate those (medical) communities.

Federal law on EHDI is currently being rewritten. In the House, the bill is HR1198. In the Senate, it's S1069. It will probably take 2 or 3 years to get this legislation passed. There are two aspects: a) early intervention, and b) more funding. [Pointing to "a":] "That's where our role comes in....I can't emphasize enough how critical that is going to be--going forward--for us as a community...One of the critical pieces we need from the Deaf community is role models...Hey, where are you? Those of you who could serve as Deaf role models? We have some. We need more."

The process needs to be made more "Deaf friendly" and more family friendly, instead of relying predominantly on the medical model.

ALL modes of communication need to be given as options, especially including ASL, which has been excluded in the past. "We need to fight to have ASL on the table as an option."

BBS and Beth Benedict were involved in writing the 2007 NAD position statement.

Getting involved at the local level is extremely important. "That's how AG Bell does it--That's their strategy--They get involved at the local level with the EHDI professionals...It's critical that we get ourselves involved with the EHDI process, as coordinators. In order to do that, there has to be referral options available."

Each state has their own definition of early intervention. Colorado's program is good. South Dakota's is way behind, still being influenced by S.E.E. signs and oralism.

Find out "who are the public policy makers?...Make sure that state law (for each state) is in alignment with federal law, because oftentimes the state misinterprets the federal law."

93% of newborns are being screened

2% of those (of the 93%) are being referred to audiologists

6% of those are documented as being Deaf or hard-of-hearing

87% of those are referred to an early intervention program

53% of those are actually enrolled in an early intervention program

"We are missing many that are falling through the cracks...Why?--staffing issues."

Of the 300 early intervention sites in 19 states, only 48% have a service provider with a degree in Deaf education on the staff. "This really is a startling statistic. What are we going to do about it?"

All this is made worse by the prevalence of the pathological-medical view.

AG Bell provides lots of tools and resources to parents and that's why parents gravitate toward them. "We have things that AG Bell can't offer parents. We have EXPERIENCE....We've got to get that info out to parents. It's imperative."

Dr. Scoggins finished her address and there was much visual applause.

Erica Hossler stood up to make a comment during the question time and said she attended the EHDI conference in New Orleans recently and saw that there were no booths giving information on ASL. All of the people at the meeting were hearing.

BBS emphasized: "We need to go to those EHDI meetings, and also attend those AG Bell meetings.

BBS: Look at these web sites:

http://infanthearing.org <http://infanthearing.org/>

http://ceasd.org <http://ceasd.org/>

DBC core member David O. Reynolds said that everyone should get involved with their DBC state chapters in order to work in partnership with the NAD. He said: "Together we can make changes for Deaf communties (visual applause)."

BBS: Think outside the box--bring those two organizations [NAD and DBC] together, to work together.

David O. Reynolds: "We are all victims of the education system and we've all gone through hard times...the oppression from the bureacrats and the system (the medical model)...Get empowered! Know what your rights are!....Through action, things will change."

(Visual applause.)

--Brian Riley, DBC conference blogger

Written: Saturday, June 28, 2008, 10:45 pm
Posted: Sunday, June 29, 2008, 12:00 pm

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