Transcriber: Nina Le Reviewer: Rhonda Jacobs
[The interpretation provided for this presentation is live and unrehearsed.
Interpreter(s) assigned may or may not have had materials in advance
for preparation.
Inaccuracies related to the content of the material
may be due to imperfections in the interpreting process.
This interpretation has not been reviewed by the presenter.]
Thank you very much and hello everybody.
I know everyone is looking at me and thinking of me
as an early interventionist, a woman, whatever identity you're ascribing to me.
But today, in fact, I stand before you here to talk about early intervention,
but also to talk about what your role in early intervention approach is.
We often talk about it as a solution, but not about the "how."
And my answer is community organization.
You may be wondering what that means,
and I will show you the definition of a community organizer
on the next slide.
[Community Organizer
Gets people to work together to solve their own problems and change the world
for the better]
As it says here, people who work together in collaboration
to change the world for the better.
Okay, that last piece, "the world for the better," is interesting.
President Obama,
one of his first jobs was a community organizer in Chicago.
He got very involved in his community and tried to identify gaps with agency,
tenant's rights.
He worked for a small agency fundraising about $70,000
to be able to expand their mission and was able to double it in size.
Then he returned to law school,
but he never forgot his roots as a community organizer.
And I think he has in fact changed the world for the better.
I think this approach can be applied to the field of early interventionists.
And the next slide will in fact explain
what our responsibility as community members are.
[Community Organization]
Here you can see it says that you have to know the ropes.
You have to know your people,
the community in which you will be working with,
their policies, information within our boundaries.
Remember it says work together, not "work for," work together.
It really means collaborating with each other.
We have to organize ourselves such as NAD, Gallaudet, [ASDC],
lots of other organizations
that have truly taken on the meaning of collaborating
and incorporating hearing allies.
We have many hearing allies that are included in this community,
and they have to be included when we say we're working together.
The next slide will show you a little bit more about education.
[Community Organization
Develop strategies
Recruit and develop leaders
Educate members
Handle meetings that productive and focused
Develop and implement plans
Commit to follow up, which is 90% of the job]
This is often a weak point.
We can obviously all get around the message that it should be done.
But does it actually happen?
Are all of us on the same page?
Often that is not the case.
We do need to work together to educate outsiders.
And this is one good example.
This is why we're all here together.
Today we've seen and heard many good ideas that I'm sure you could get excited about
and get behind.
But what would you do next?
The only way to accomplish some of these goals is to work together.
90% has to be followed up upon.
So we can discuss ideas all day, but when a meeting is done,
if nobody moves on any of the resolutions that were proposed,
if everyone says it will happen later, then it will never happen.
We need 90% follow up, and if we don't have that,
we can't blame anybody else but ourselves.
Yes.
Yes, this idea of being a community organizer
can absolutely apply to the field of early intervention.
[The Cause
Universal Newborn Hearing Screening (1990)
Comprehensive, accurate and unbiased information
Knowledgeable
Meaningful interaction
Parents
Clinicians]
I think we are all aware
that early intervention has a long way to go.
Right?
Do you believe so?
It still has a long way to go.
I'm seeing many heads nodding, and I agree with you.
Even though we have come such a far way, we still have quite a long road to travel.
Our job is not over.
It is not finished by any means.
I'll give you a brief history.
In 1990, all babies who were born
were required to go through a hearing screening.
And I knew that in 1990 that bill was passed.
And honestly I thought that babies would be born and identified as deaf,
and then they would be exposed to a signed language and a written form of English.
So in fact, deaf infants would not be delayed
and the incidence of delayed language would decrease.
That wasn't in fact what happened.
Babies who were born deaf were identified
and parents went through a grieving process.
They were shocked.
As we've heard today, 90% of deaf children are born to parents who are hearing.
And do you realize who the first person a parent of a deaf child typically meets?
Their own deaf baby!
They've never been exposed to the deaf community or deaf adults before,
so they have no idea what their deaf child can grow to do.
Some parents actually think that they might have to take their child
and send them to a group home or in some other residential institution.
Deaf children themselves who grow up never meeting another deaf adult
have no role models to look up to,
and some of them actually think
that they are the only deaf person that walks the Earth.
I see some heads nodding.
And I'm assuming that those experiences have happened to you
or people who you know.
There are big gaps.
We need deaf community involvement.
Parents need to see deaf adults as role models.
The information that families get should be unbiased,
should be comprehensive,
and it [should] be from those individuals who have specialized knowledge
in the area of deaf and hard of hearing education
Not all audiologists are specialized in deaf community
and the issues that plague deaf individuals.
Remember, around the United States we have about 200 audiological training programs,
and one of them is here at Gallaudet.
There are only one, perhaps two,
that require those audiology students to learn sign language.
The rest?
Zilch.
That is a problem.
So, we have parents who have never met a deaf individual before in their lifetime
who have now found out that they have a deaf child.
Who do you think they're going to listen to?
The audiologists and speech pathologists.
They are ready to accept the information that they are given without questioning it
or doing research on their own.
[The JCIH 2007 Position Statement:
Principles and Guidelines for Early Intervention
After Confirmation That Child is Deaf or Hard of Hearing, 2013
(www.jcih.org)]
Now while that is happening,
you see before I mentioned the Joint Committee on Infant Hearing,
the JCIH, and the papers that they published.
The JCIH committee gets together,
and there are two representatives from seven different organizations
and they write "position papers."
That is their charge.
It's almost a rule book that audiologists must adhere to.
If you ask any audiology student "Do you know about a JCIH paper?"
they will all say without hesitation, "Yes."
It's their Bible. It's their rule book.
For example, those seven different organizations that are represented
write position papers,
and most of them focus on the medical model of deafness.
So they talk about
[the American Academy of Audiology, the American Academy of Pediatricians,
ASHA, the American Speech and Hearing Association].
Those are the different types of organizations
that are represented for JCIH.
AG Bell, another one.
The [CED, Council on Education of the Deaf],
was the first organization that finally allowed a deaf representative,
and that was me in 2005.
So six organizations that were not deaf friendly, one being deaf friendly,
all comprised JCIH.
And before a paper is published, they must reach group consensus.
That's voting power.
And that's where community organizers can get involved.
They can be working behind the scenes.
And I can give you some tips
on how to become an effective community organizer.
So back to JCIH position papers.
Before I joined the board,
there were no signing deaf adults represented.
And then their 2007 position paper
focused on the hearing infant screening procedure,
but no early intervention services were mentioned.
And then later on in 2013,
early intervention services were added.
[Goal 2: All Children Who Are D/HH and Their Families Experience
Timely Access to Service Coordinators Who Have Specialized Knowledge and Skills
Related to Working With Individuals Who Are D/HH.]
There were 14 different goals, and I'm going to choose just a select few
that I think really tie into my talk today.
In that position paper,
it stated that children who in fact were identified as deaf and hard of hearing
should have access to a service coordinator
who specializes in knowledge of deaf and hard of hearing.
Is that happening?
I ask you.
Is it happening?
Most degrees that are awarded to these individuals are audiology degrees,
special education degrees.
So that is not happening.
That's one of the goals that is failing.
You could, as a community organizer, go back to your hometown
and ask if in fact there is anyone who is an early interventionist
that has a specialization in deaf and hard of hearing community
and the issues that they face.
Nobody's asking for that.
Parents aren't asking for that.
[Goal 3: A primary goal of the El program is to promote children's development
of strong language skills,
regardless of the route or routes taken by the family
(eg, spoken language, American Sign Language)]
They don't know to ask for.
Do we have individuals who have these specialized skills,
who know how to fluently sign in American Sign Language?
Again, if parents or nobody is asking for these resources,
they're not going to be provided.
And that line says it all.
[Going to a Speech Therapist
ASL - American Sign Language
Mentors, Guides, Advisors, Teachers, Therapists]
To be honest, my dream is that any program that would offer speech -
well, all programs if we're talking about my dream -
by default, they all offer speech therapy.
If a program offers speech therapy and a speech therapist,
then they must automatically offer an ASL therapist.
And those two individuals must be working together.
And I say ASL therapist for a reason.
Some people would rather say a deaf mentor, maybe a deaf guide.
There are different terms out there.
A deaf teacher, perhaps.
But insurance companies will accept and pay for
someone who is called a therapist.
So I think it would just be easier if we had said
that that person would be provided a speech and language therapist
as well as an ASL therapist
because it's true.
[Goal 10: Deaf are expected to be integral and active Participants
in the EHDI Systems.
"Children are the world's most valuable resource
and its best hope for the future."]
One of the last goals you see here on the slide
is that deaf individuals will be involved in the EHDI system.
Every state has an EHDI advisory council.
Since 1991, only eight states had this type of representation,
which leaves 42 states
that have yet to instate this representation.
And some of them have three or four in the same state.
Eight states is better than none, but we have a long way to go.
And I have hope that this will in fact happen.
Here's a quote from JFK, John F. Kennedy:
"Children are our most valued resource for the future."
So we must act now.
Really, actions "should have started yesterday."
[Community Organization with a goal.....
Check list]
Clearly, the community needs to organize itself.
I've done my part.
I am behind the scenes working on policy and procedure.
We have a rule book that you can take advantage of.
And now it's your turn.
What goals would you like to see?
What changes would you like to see?
If deaf people were to get involved, what exactly would their role look like?
What would it take?
What resources do we need?
Those goals need to be clearly defined.
[Community Organization with a goal.....]
I think we are all ready to work together to change the world for the better
and do that now.
Thank you.