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We are going to have a great experience here
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in this first plenary session with Jeff Brosco.
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I already did my short introduction to him before,
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and so we're going to move right into his presentation.
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And there will be plenty of time
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for questions and answers afterwards.
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So
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buckle your seat belts and be ready for a great ride.
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So you heard my name is Jeff Brosco.
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I'm excited to be here talking to you now,
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as you guys come in.
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I'm sorry this isn't a more intimate setting.
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It's just a big, huge ballroom,
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but afterwards, hopefully, you guys will see me.
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I'll be here for the next two days
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so we can just chat a little bit more personally.
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So we're doing a talk twice in a row.
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We'll see if we can do the same things, more or less,
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that we talked about the first time.
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I'm going to start with a series of questions
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before we get into the talk itself.
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And the first question for you guys is,
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Why are you here?
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Why are you here?
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And this isn't meant in a deep existential way.
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Why are you here in Cincinnati?
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Why are you here at this conference?
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Maybe because it's a nice city,
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you want a chance to see some friends.
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Maybe it was required as part of your grant
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or part of your training.
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My guess though is that you're most of you are here
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because you want to learn.
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There's something important for you to gain from this.
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Okay, second question:
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Why do you do the work that you do?
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I was joking with somebody I met from Oregon today
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who's from Hands & Voices,
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it's not because of vast personal wealth, right?
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You're not in this for the money.
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You're here because you want to help people,
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you want to make a difference, right?
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That's why you do the work you do.
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And the third question is,
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if you added up all the resources you have for the state
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from MCHB, from CDC,
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how many of you feel like you have way too many resources
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and not enough work to do?
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Anyone?
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(audience laughing)
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We're taking names by the way.
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Yeah, so what I'm gonna talk to you over the next
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half hour or so,
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it really is a pretty short topic
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'cause I want to have plenty of time for discussion,
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is to say we think that the blueprint
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that I'm gonna tell you by the minute
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is in some ways designed to address
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the very issues that we're facing,
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which is not enough resources,
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overwhelming amount of work to do,
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and we want to really focus on what really matters.
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'Cause we think that's one of the ways
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out of this conundrum.
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So I'm gonna spend just a few minutes
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telling you about who I am, and then why EHDI?
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Why do you think EHDI is one of the best examples
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of how the blueprint can be implemented?
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So I gave a similar kind of talk a couple weeks ago
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to the folks in the sickle cell community,
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and I will with hemophilia and a few other groups
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in the future,
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but we think EHDI's particularly well poised
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to take advantage of what we're gonna do.
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And then I'll tell you about the blueprint,
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where it came from and where we are now,
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where we think we're headed,
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particularly in the EHDI world,
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and how we can get help get there.
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And notice that the we is MCHB and you.
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This is a team approach.
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So who am I?
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First and foremost, I'm a pediatrician,
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even though I've been working
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for the last six months full-time for MCHB,
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I am still, on Monday afternoons,
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seeing patients in general pediatrics practice.
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I have been for 30 years.
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I specialize in the development of behavior,
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but it's integrated into a general peace place.
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So I see kids and their families all the time,
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and it's really cool when they graduate high school,
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go on and do things and you get to see them grow up.
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Although I'm new in Maternal & Child Health Bureau,
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I've been a grantee, right?
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So I was a LEND director for a while,
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and Pediatric Mental Health Group.
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I don't know if you know about that, but I ran with those.
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And I've been also deeply involved
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in Florida state government.
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I was the deputy secretary of health for some years,
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and then was the CYSHCN director.
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So for those of you who know the block grants,
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Children and Youth with Special Health Care Needs,
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I was the director for that.
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And my research is a history of health policy
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and, to some degree, some clinical research.
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Notice what it doesn't say here.
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It doesn't say that Jeff is an expert
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in deaf and hard of hearing.
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And I'm not.
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I'm also not an expert in sickle cell disease or hemophilia.
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You guys are actually experts.
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And so, in particular,
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if you hear me say something that doesn't make sense
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or something that sounds off,
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I hope that you'll use that as an opportunity to educate me.
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'Cause you guys are the experts and I have lot to learn.
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So why EHDI?
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Why do we think EHDI is such a good example
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of what we can do with the blueprint?
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Well, first of all,
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at least in terms of newborn screening,
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it's highly credible, right?
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There are many more children
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that we discover through newborn screening
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who are deaf or hard of hearing
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than in many of the other metabolic conditions,
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even if you put them all together.
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So it's something that we need to pay attention to
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as part of the work that we do.
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And we also know that this is a critical time
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for language acquisition
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and that the brain is specifically designed
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to gather language and make sense of the world
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in the first few years of life.
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And so this is an incredible opportunity
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for us to really make a difference for a child's life
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and really for that whole family.
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And you all know that the EHDI Act
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has been reauthorized recently.
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I've put this up, though, just to remind us a little bit
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about some sort of basic government stuff.
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And I don't know about you,
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but I learned about how a law gets made
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from "Schoolhouse Rock!"
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All right, you guys remember "Schoolhouse Rock!"?
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Right, as a kid you learned it.
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It was a great song.
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I won't sing for you, that would be awful.
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(audience laughing)
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But the idea, right,
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is that that there are different roles in government,
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and that Congress is the one that's responsible
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for writing the laws
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that the president has to sign into law.
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And importantly, Congress is the one
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that decides on the budget and appropriations.
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And so we, in MCHB,
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our job is to take those laws and that budget
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and try to make something important and impactful from it.
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But there are real limits, right?
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We can't take money from sickle cell
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and move it over to EHDI.
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And we can't do a lot of things.
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And, in particular, something that comes up all the time
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is that the United States of America
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is a federalist approach, right?
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Meaning that the feds...
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We can say something, but states get to decide a lot.
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And child health policy in particular,
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whether we're talking about Medicaid, Part C,
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a whole bunch of other stuff,
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it's the states that decide what to do in a lot of ways.
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So we put some limits on that from the federal side.
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But really this is a form of government
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that I think most of us would agree has done really well.
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But it does put some limits on what we can do in MCHB.
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It's extraordinary
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what EHDI has been able to accomplish, right,
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over the last couple of decades.
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If you would imagine to a time before
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we were doing newborn hearing screening to now,
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now over 90% of kids are getting hearing screening,
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and most are getting a diagnosis
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the connected to intervention.
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And there's a lot of research
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that shows we made a big difference.
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You guys probably know
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there was a study that was done recently
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of reading scores in Colorado
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and how reading scores have gone up every year
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since the time newborn hearing screening started.
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It's an incredible success.
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Also embedded in that research, though,
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was a little bit something sad, right?
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That the best predictor was socioeconomic status.
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And families with a lower SES
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were less likely to have reading scores that went up.
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So we still have some work to do.
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But overall, if you think about public health programs
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that had a huge impact, that really made a difference,
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EHDI is right up there as one of the top ones.
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Good news is there's no challenges for you guys, right?
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Everything's easy.
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(Jeff chuckles)
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So my team has spent some time trying to educate me,
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I'm a little slow, but they're trying to educate me
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about the challenges that you guys face.
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And I've had a chance to talk to folks
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from Hands & Voices, from NAD,
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I've talked to Carl and his team
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and some of the state coordinators
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to hear what are some of the issues that you guys face.
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And there is a long list.
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And I started off by asking
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if you had too many resources and not enough to do.
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And of course you guys said the exact opposite, right?
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It's that you have
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an extraordinary list of things to accomplish
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and not enough resources.
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Not easy.
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It may be the biggest challenge,
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but it also has a lot of attention, right?
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So this is Dal Al-Mohamed from the White House.
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So the Biden-Harris Administration
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recognizes the incredible work that you guys are doing,
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any outcomes, and how important it is.
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So this is something that really matters to us.
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Again, we think EHDI can be an exemplar
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of how the blueprint gets implemented.
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So what is the blueprint?
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What does it mean?
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What are we doing?
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Where does it come from?
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First is to sort of talk about
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how this whole thing fits together.
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So you heard that I'm the division director
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for Services for Children with Special Health Care Needs.
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And by the way,
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I was trying to start using the word specific
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rather than special.
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A lot of our stakeholders are telling us
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they don't like that word.
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We can talk about it more in the question and answer
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if Colin remembers to ask that question.
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But why don't we do this?
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Why do we have this category?
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And it's because there are 13,000 different conditions
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that a child can have.
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They spent one guess, you're type 1A.
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If not, guess you're type 1B.
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And there's chronic liver disease and there's heart disease,
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and a whole bunch of stuff.
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But most of those children
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have more in common with each other
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than they do with children
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who don't have any sort of condition.
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And that is that access to health insurance,
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greater chance that they're living in poverty,
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unmet needs, whole range of things.
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So we, from a policy point of view,
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when we're trying to think about
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how do we work with Medicaid
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or how do we get the school system to do something,
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putting the kids together in that category makes some sense.
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And it's funny, I told the previous group here,
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talking to my teenage kids about it,
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"Well, what's the right word to use?
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Should it be special or this or that?"
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And my daughter said, "Well, why use the labels at all?
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Aren't they just kids?"
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And she's right.
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She's absolutely right.
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And we all know that we just use these words
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as a way of thinking about groups of kids
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because it doesn't make a difference
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from a policy point of view.
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But at the end of the day,
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it's still that child, that family.
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We don't mean anything more about it than that.
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So for those of you who have been part of the MCHB world
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for the last 20 years,
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you know that one of the ways we decide
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whether a state or a region is functioning well
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is by these six indicators.
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And each of these pieces works together.
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And if they're all functioning well,
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then children and families
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are probably getting the kinds of things that they need
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and they're probably thriving.
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It's probably not true
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that any one state's got it all worked out,
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but these are the things that we typically measure
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and have for the last couple of decades.
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And it's been our way of thinking about it.
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At an even broader level,
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at the Maternal and Child Health Bureau,
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we've taken into account mothers and all children.
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Our mission is to improve the health and wellbeing
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of America's children, mothers, families.
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00:10:33.600 --> 00:10:36.630
And we spent a fair amount of time as an organization
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thinking about what are the different components.
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So we talked about access and equity, capacity, impact.
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Within that is where the blueprint comes.
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And so the blueprint is particularly for children
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with specific healthcare needs.
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And our big goal is that we want children and youth,
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I'm gonna call it CYSHCN, makes it a little easier,
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to enjoy full lives and thrive in their communities
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from childhood through adulthood.
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And you see the four components there.
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Quality of life and wellbeing, access to services,
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financing, and health equity.
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Well, where did this blueprint come from, right?
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It's not something that we just made up in MCHB.
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It actually came from a two-year process.
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00:11:15.540 --> 00:11:16.827
And for those of you who know Sarah Beth and Treeby,
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they spent a huge amount of time with stakeholders,
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with families, with youth,
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with experts inside and outside of government.
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Many of you probably participated.
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They say, "What is it that we need to do
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to get to the next level
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to help children and families thrive?"
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00:11:30.440 --> 00:11:31.856
So there's a lot of work that went into it.
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There's a lot of public input.
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And in some ways, the new part,
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the thing that really matters here is quality and equity.
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Families have told us over and over again
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that what you're measuring matters.
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And that right now,
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like, the things we tend to measure in the healthcare system
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00:11:48.570 --> 00:11:51.210
are whether a child is fully immunized by age two
335
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or they had a well-child care visit at age 11,
336
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which are important,
337
00:11:55.229 --> 00:11:56.390
but most families care, you know,
338
00:11:56.390 --> 00:11:58.050
is my child ready for kindergarten?
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00:11:58.050 --> 00:11:59.790
Is he getting along with his siblings?
340
00:11:59.790 --> 00:12:01.200
Is he able to go outside and play?
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00:12:01.200 --> 00:12:03.470
Is she doing what she needs to do
342
00:12:03.470 --> 00:12:05.640
to graduate high school and become a healthy adult?
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00:12:05.640 --> 00:12:08.670
Those are the things that typically matter for our families.
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00:12:08.670 --> 00:12:09.900
And so we need to think much more
345
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about measuring those kinds of things
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because that's what matters to families.
347
00:12:14.790 --> 00:12:16.806
And the second thing we've learned over the last few years
348
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is that equity matters,
349
00:12:20.190 --> 00:12:21.810
and that we wanna make sure that every child
350
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has the opportunity to make progress.
351
00:12:24.150 --> 00:12:25.772
Every child has the opportunity to grow
352
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and become a healthy adult.
353
00:12:28.820 --> 00:12:30.210
So we put this together and said,
354
00:12:30.210 --> 00:12:33.030
we need a sort of a plain language version of the blueprint.
355
00:12:33.030 --> 00:12:34.170
What is it we're really trying to do?
356
00:12:34.170 --> 00:12:37.230
'Cause there was half a dozen papers that came on pediatrics
357
00:12:37.230 --> 00:12:41.310
and they were, I think, 12 principles and 40 strategies.
358
00:12:41.310 --> 00:12:43.710
And if you've read it, it's quite overwhelming.
359
00:12:43.710 --> 00:12:46.410
And each of the strategies are things like end racism.
360
00:12:46.410 --> 00:12:49.010
Very enormous, aspirationally.
361
00:12:49.010 --> 00:12:50.130
So we tried to boil it down
362
00:12:50.130 --> 00:12:51.815
to what really makes the most sense.
363
00:12:51.815 --> 00:12:53.010
And this is what we came up with.
364
00:12:53.010 --> 00:12:55.110
Every child gets the services they need,
365
00:12:55.110 --> 00:12:57.210
so they can play, go to school,
366
00:12:57.210 --> 00:12:58.920
and grow up and become a healthy adult.
367
00:12:58.920 --> 00:13:01.473
And so that their families are doing well too.
368
00:13:03.390 --> 00:13:07.143
Straightforward, seems pretty obvious, makes a lot of sense.
369
00:13:08.428 --> 00:13:12.150
Built in it, though, are some pretty big ideas.
370
00:13:12.150 --> 00:13:15.068
So every child gets the services they need.
371
00:13:15.068 --> 00:13:17.100
I think many of you may know Tawara Goode
372
00:13:17.100 --> 00:13:18.300
at Georgetown University
373
00:13:18.300 --> 00:13:21.570
has done some of the best work on cultural competency.
374
00:13:21.570 --> 00:13:23.707
And we were talking and she said, you know,
375
00:13:23.707 --> 00:13:27.090
"Equality, Jeff, is every child gets the same amount,
376
00:13:27.090 --> 00:13:30.060
but equity means every child gets the services they need."
377
00:13:30.060 --> 00:13:31.443
And you guys know from the work that we do,
378
00:13:31.443 --> 00:13:32.667
that you need to meet the child,
379
00:13:32.667 --> 00:13:34.800
you need to meet the family where they are.
380
00:13:34.800 --> 00:13:36.390
Some need more and some need less.
381
00:13:36.390 --> 00:13:37.223
That's okay.
382
00:13:37.223 --> 00:13:38.670
That's the way it works.
383
00:13:38.670 --> 00:13:40.010
And that's essentially what we mean by equity.
384
00:13:40.010 --> 00:13:42.087
You want to help families where they are
385
00:13:42.087 --> 00:13:45.214
and help them get to where they need to go.
386
00:13:45.214 --> 00:13:47.460
So the child can learn to play, go to school,
387
00:13:47.460 --> 00:13:48.630
become a healthy adult.
388
00:13:48.630 --> 00:13:50.220
That's where thriving comes in.
389
00:13:50.220 --> 00:13:52.590
That's where the quality of life measure is.
390
00:13:52.590 --> 00:13:55.423
Transition to adulthood is based on that too.
391
00:13:55.423 --> 00:13:58.620
And so the grownups and siblings that are thriving too
392
00:13:58.620 --> 00:14:01.917
gets to us a really important idea of caregiver wellbeing.
393
00:14:01.917 --> 00:14:03.210
And the reason why I say this is so important
394
00:14:03.210 --> 00:14:04.230
in the measurement world
395
00:14:04.230 --> 00:14:06.990
is that there are 13,000 conditions.
396
00:14:06.990 --> 00:14:09.493
There's 13,000 different things you can measure.
397
00:14:09.493 --> 00:14:11.850
Now in the deaf part of the hearing world,
398
00:14:11.850 --> 00:14:15.060
language acquisition at age three is a pretty good measure.
399
00:14:15.060 --> 00:14:15.980
But that's not necessarily going to work
400
00:14:15.980 --> 00:14:19.560
for a child with cancer or someone else.
401
00:14:19.560 --> 00:14:22.860
So if the system is working well,
402
00:14:22.860 --> 00:14:26.520
you'd like to think that caregivers, families are thriving.
403
00:14:26.520 --> 00:14:28.980
They're able to go to work, participate in the community,
404
00:14:28.980 --> 00:14:30.810
and not feeling completely, totally overwhelmed
405
00:14:30.810 --> 00:14:33.717
by the needs of their child and trying to meet them.
406
00:14:34.620 --> 00:14:36.590
So every child gets the service they need,
407
00:14:36.590 --> 00:14:39.240
so they can play, go to school, become a healthy adult,
408
00:14:39.240 --> 00:14:41.610
and families thrive too built into that.
409
00:14:41.610 --> 00:14:43.620
There's a lot of really important concepts.
410
00:14:43.620 --> 00:14:47.550
And in some ways it's really the heart of the blueprint.
411
00:14:47.550 --> 00:14:51.330
So how do we turn that into something that works?
412
00:14:51.330 --> 00:14:52.830
What do we actually do?
413
00:14:52.830 --> 00:14:54.603
I'm gonna spend a couple minutes on this
414
00:14:54.603 --> 00:14:57.720
and come back to how it fits into any context.
415
00:14:57.720 --> 00:14:58.755
So the first thing we measure, of course,
416
00:14:58.755 --> 00:15:00.507
is quality of life, right?
417
00:15:00.507 --> 00:15:02.247
And we wanna measure that.
418
00:15:02.247 --> 00:15:04.080
And I gave you some examples here
419
00:15:04.080 --> 00:15:07.590
of child thriving, kindergarten readiness, healthy weight,
420
00:15:07.590 --> 00:15:11.610
reading at grade three, caregiver wellbeing,
421
00:15:11.610 --> 00:15:12.990
transition to adulthood.
422
00:15:12.990 --> 00:15:15.150
And then for those 13,000 conditions,
423
00:15:15.150 --> 00:15:18.366
we need at least one condition-specific measurement.
424
00:15:18.366 --> 00:15:23.130
In EHDI world, it could be children's language acquisition.
425
00:15:23.130 --> 00:15:24.603
Now comes the hard part.
426
00:15:25.440 --> 00:15:28.140
We want to start measuring this at a population level.
427
00:15:28.140 --> 00:15:29.977
So you may be used to saying,
428
00:15:29.977 --> 00:15:31.403
"This is the number of families we helped,
429
00:15:31.403 --> 00:15:33.240
this is the number of trainings we did,
430
00:15:33.240 --> 00:15:36.060
this is the number of website kits we had."
431
00:15:36.060 --> 00:15:38.460
What we'd really like to start focusing on is,
432
00:15:38.460 --> 00:15:43.080
what percentage of children in your state
433
00:15:43.080 --> 00:15:44.703
are achieving that milestone?
434
00:15:46.830 --> 00:15:47.953
What percent?
435
00:15:47.953 --> 00:15:50.160
And then built into that as well,
436
00:15:50.160 --> 00:15:51.900
it's not just the overall percentage,
437
00:15:51.900 --> 00:15:55.050
but then analyzing by whatever matters in your state.
438
00:15:55.050 --> 00:15:56.820
Historically, underserved populations.
439
00:15:56.820 --> 00:15:58.410
It may be rural populations.
440
00:15:58.410 --> 00:15:59.783
It might be limited English proficiency.
441
00:15:59.783 --> 00:16:02.850
It might be some degrees of, obviously, poverty status.
442
00:16:02.850 --> 00:16:05.763
So making sure that every child is thriving.
443
00:16:07.350 --> 00:16:09.477
And the last part of this is accountability.
444
00:16:09.477 --> 00:16:11.047
Now we're not talking about, you know,
445
00:16:11.047 --> 00:16:12.030
"You don't get your EHDI money
446
00:16:12.030 --> 00:16:14.220
if you're not getting certain benchmarks."
447
00:16:14.220 --> 00:16:15.327
That's not the idea of at all.
448
00:16:15.327 --> 00:16:16.470
But the idea of it is that
449
00:16:16.470 --> 00:16:18.690
we come up with a plan that makes sense,
450
00:16:18.690 --> 00:16:20.280
that we're measuring things over time,
451
00:16:20.280 --> 00:16:21.990
and we're saying what worked and what didn't work.
452
00:16:21.990 --> 00:16:23.880
We're able to explain it and then try it again
453
00:16:23.880 --> 00:16:25.113
and keep moving forward.
454
00:16:28.680 --> 00:16:29.513
All right.
455
00:16:30.630 --> 00:16:34.020
So just to sum up, the blueprint is a vision
456
00:16:34.020 --> 00:16:37.717
for how the healthcare system can work.
457
00:16:37.717 --> 00:16:39.360
It came from families, youth,
458
00:16:39.360 --> 00:16:41.250
subject matter experts like you.
459
00:16:41.250 --> 00:16:43.650
It came from people who are experts in the field,
460
00:16:43.650 --> 00:16:46.290
both within and outside of government agencies.
461
00:16:46.290 --> 00:16:48.300
And we did this 'cause we know we can do better.
462
00:16:48.300 --> 00:16:51.240
The six core outcomes, components of a system
463
00:16:51.240 --> 00:16:52.830
are helpful, they're useful,
464
00:16:52.830 --> 00:16:55.717
but they weren't getting us to where we wanted to get to.
465
00:16:55.717 --> 00:16:59.130
And what's new are the ideas of equity and quality of life.
466
00:16:59.130 --> 00:17:00.930
And we think that if we measure what matters,
467
00:17:00.930 --> 00:17:04.203
then children will thrive, make a difference.
468
00:17:05.850 --> 00:17:08.423
All right, so how does this fit into the EHDI world?
469
00:17:09.343 --> 00:17:10.590
1-3-6.
470
00:17:10.590 --> 00:17:11.503
Has anyone ever heard this?
471
00:17:11.503 --> 00:17:12.336
1-3-6.
472
00:17:12.336 --> 00:17:13.693
You guys are experts.
473
00:17:13.693 --> 00:17:15.293
I can explain it to you, if you like.
474
00:17:16.440 --> 00:17:18.799
So this is obviously the core in the space of their age.
475
00:17:18.799 --> 00:17:20.850
EHDI has a really good base to build from.
476
00:17:20.850 --> 00:17:22.470
We're in good shape.
477
00:17:22.470 --> 00:17:24.270
And overall the numbers been really good, right?
478
00:17:24.270 --> 00:17:26.820
I mean, the pandemic really made it hard,
479
00:17:26.820 --> 00:17:29.070
and there are a whole bunch of reasons for this.
480
00:17:29.070 --> 00:17:32.343
And some of it has been in the research literature already.
481
00:17:33.611 --> 00:17:34.977
And so there are reasons that we're addressing,
482
00:17:34.977 --> 00:17:36.420
and I think we'll probably see
483
00:17:36.420 --> 00:17:38.193
a bounce back up in those numbers.
484
00:17:39.630 --> 00:17:40.736
What we'd like to see too, though,
485
00:17:40.736 --> 00:17:44.190
is moving to the next step.
486
00:17:44.190 --> 00:17:47.610
So, yes, early identification is crucial
487
00:17:47.610 --> 00:17:49.740
to make sure that language is available to children
488
00:17:49.740 --> 00:17:51.300
from the very beginning.
489
00:17:51.300 --> 00:17:52.530
But we also want to start thinking about
490
00:17:52.530 --> 00:17:53.580
where we're headed to.
491
00:17:53.580 --> 00:17:54.930
What's the big picture?
492
00:17:54.930 --> 00:17:57.120
What are the things that matter?
493
00:17:57.120 --> 00:18:00.397
And so this is the Joint Committee on Infant Hearing.
494
00:18:00.397 --> 00:18:03.540
"Goals of early hearing detection and intervention
495
00:18:03.540 --> 00:18:06.870
are maximizing language, communication competence,
496
00:18:06.870 --> 00:18:09.990
literacy development, psychosocial wellbeing
497
00:18:09.990 --> 00:18:11.310
for children deaf or hard of hearing."
498
00:18:11.310 --> 00:18:13.290
Those are the things we really want to get to.
499
00:18:13.290 --> 00:18:15.660
So, yes, 1-3-6 matters,
500
00:18:15.660 --> 00:18:18.240
but this is the end point that we're hoping for.
501
00:18:18.240 --> 00:18:20.300
So here's the big lift, right?
502
00:18:20.300 --> 00:18:23.070
This is the pigs can fly, if you remember that from earlier,
503
00:18:23.070 --> 00:18:23.903
if you were here earlier
504
00:18:23.903 --> 00:18:26.373
when Carl was doing his introduction at 8:15 or so.
505
00:18:27.390 --> 00:18:29.490
We wanna keep doing the short-term outcomes.
506
00:18:29.490 --> 00:18:30.360
We're not losing track of that,
507
00:18:30.360 --> 00:18:33.450
but we want to start looking at the long-term outcomes.
508
00:18:33.450 --> 00:18:35.880
So what's the percent of three-year-olds
509
00:18:35.880 --> 00:18:37.980
who are achieving those language milestones?
510
00:18:37.980 --> 00:18:38.813
So how does this look?
511
00:18:38.813 --> 00:18:41.460
Well, this is that same slide I showed you before
512
00:18:41.460 --> 00:18:44.910
about quality of life and populations and accountability.
513
00:18:44.910 --> 00:18:47.917
And in the EHDI world, we want to start saying,
514
00:18:47.917 --> 00:18:50.580
"How do we get to the longer-term outcomes?"
515
00:18:50.580 --> 00:18:51.900
And I think you may have already heard
516
00:18:51.900 --> 00:18:53.520
from some of our CDC colleagues.
517
00:18:53.520 --> 00:18:55.020
They are on board with this.
518
00:18:55.020 --> 00:18:56.483
And I mean, I have to say, for example,
519
00:18:56.483 --> 00:18:58.860
this is just good old-fashioned public health.
520
00:18:58.860 --> 00:19:01.320
This is not something brand new, right?
521
00:19:01.320 --> 00:19:03.893
This is something that many people have said before me.
522
00:19:05.430 --> 00:19:07.080
But it makes sense, I hope.
523
00:19:07.080 --> 00:19:09.200
So EHDI is an exemplar.
524
00:19:11.370 --> 00:19:12.500
Language acquisition at age three
525
00:19:12.500 --> 00:19:14.520
is that big outcome you want to aim toward.
526
00:19:14.520 --> 00:19:17.740
So what percentage of children in your state
527
00:19:19.020 --> 00:19:20.460
have language acquisition
528
00:19:20.460 --> 00:19:23.100
in the statistically average range?
529
00:19:23.100 --> 00:19:25.500
And are all populations having the same success?
530
00:19:25.500 --> 00:19:27.480
So if you analyze the populations in your state,
531
00:19:27.480 --> 00:19:29.790
based on whatever makes sense in your state,
532
00:19:29.790 --> 00:19:30.660
how are we doing?
533
00:19:30.660 --> 00:19:33.003
And what are the things we need to do better?
534
00:19:35.970 --> 00:19:37.127
I mentioned in the beginning,
535
00:19:37.127 --> 00:19:38.220
I made a joke about it
536
00:19:38.220 --> 00:19:41.196
that you guys have way too many resources, right?
537
00:19:41.196 --> 00:19:42.029
Yeah.
538
00:19:42.029 --> 00:19:44.190
So how do you manage that?
539
00:19:44.190 --> 00:19:47.400
You can't help every single child yourself personally.
540
00:19:47.400 --> 00:19:49.080
So what we're thinking about
541
00:19:49.080 --> 00:19:51.360
is how you as EHDI coordinators,
542
00:19:51.360 --> 00:19:53.820
for example, if you happen to be an EHDI coordinator,
543
00:19:53.820 --> 00:19:56.010
part of your job, maybe a main part of your job,
544
00:19:56.010 --> 00:19:58.455
is just to gather together the stakeholders.
545
00:19:58.455 --> 00:20:00.180
I'm gonna show you, in a minute, a pipeline,
546
00:20:00.180 --> 00:20:01.983
a figure we can put together.
547
00:20:02.910 --> 00:20:03.997
And it might be to say,
548
00:20:03.997 --> 00:20:06.030
"Well, where are the leaks in our pipeline
549
00:20:06.030 --> 00:20:07.317
and how do we fix them?"
550
00:20:07.317 --> 00:20:08.797
And getting all the stakeholders to say,
551
00:20:08.797 --> 00:20:12.480
"Okay, my piece is this, I want to work on that."
552
00:20:12.480 --> 00:20:14.490
And then the job with the National Coordinating Center,
553
00:20:14.490 --> 00:20:15.840
and Carl has already heard this
554
00:20:15.840 --> 00:20:17.382
because I can account, though, for this time,
555
00:20:17.382 --> 00:20:19.293
it might change a little bit in the future, right?
556
00:20:19.293 --> 00:20:20.880
It might be a lot more about
557
00:20:20.880 --> 00:20:23.400
implementation science and quality improvement,
558
00:20:23.400 --> 00:20:26.130
because most of you guys have tried to do this, right?
559
00:20:26.130 --> 00:20:27.300
So you're gonna need some support
560
00:20:27.300 --> 00:20:29.160
from our national TA centers.
561
00:20:29.160 --> 00:20:30.047
And it's the job of all of us
562
00:20:30.047 --> 00:20:31.620
to try to hold ourselves accountable
563
00:20:31.620 --> 00:20:34.070
for what kind of progress we're making over time.
564
00:20:35.730 --> 00:20:38.280
So this is a figure that I've suggested before.
565
00:20:38.280 --> 00:20:39.113
So if you look,
566
00:20:39.113 --> 00:20:40.430
on the left side is the newborn screening part.
567
00:20:40.430 --> 00:20:41.910
And then on the right side
568
00:20:41.910 --> 00:20:44.037
is the child achieving the language milestones.
569
00:20:44.037 --> 00:20:45.930
And so there are different parts of this.
570
00:20:45.930 --> 00:20:48.120
And you could put a lot of different bubbles here, right?
571
00:20:48.120 --> 00:20:49.920
But you need to have a diagnosis.
572
00:20:49.920 --> 00:20:52.590
Family support should go all throughout this.
573
00:20:52.590 --> 00:20:55.230
A medical home might be part of this in your state.
574
00:20:55.230 --> 00:20:56.610
Early intervention.
575
00:20:56.610 --> 00:20:58.650
And the idea is to meet each state,
576
00:20:58.650 --> 00:21:01.080
meet all of you kind of where you are.
577
00:21:01.080 --> 00:21:02.340
And some of you have already been doing this.
578
00:21:02.340 --> 00:21:04.380
You've already been thinking of this sort of
579
00:21:04.380 --> 00:21:06.240
continuous quality-proven pipeline approach.
580
00:21:06.240 --> 00:21:07.620
For some of you it's brand new.
581
00:21:07.620 --> 00:21:09.480
That's okay.
582
00:21:09.480 --> 00:21:11.190
The idea is that we can get on this path
583
00:21:11.190 --> 00:21:13.290
of aiming toward what really matters,
584
00:21:13.290 --> 00:21:15.120
why we're really in this business.
585
00:21:15.120 --> 00:21:17.120
We can start to make progress over time.
586
00:21:18.330 --> 00:21:20.280
So what might be some of the things that we would do?
587
00:21:20.280 --> 00:21:21.900
So if we take the same pipeline,
588
00:21:21.900 --> 00:21:24.240
we can imagine who the folks that would matter.
589
00:21:24.240 --> 00:21:25.860
And it's gonna vary in your state.
590
00:21:25.860 --> 00:21:27.840
Maybe you have more than enough audiologists
591
00:21:27.840 --> 00:21:29.273
and that's not the issue,
592
00:21:29.273 --> 00:21:31.320
but the quality of preschools
593
00:21:31.320 --> 00:21:33.000
and the high-quality early intervention
594
00:21:33.000 --> 00:21:34.650
is not what's working.
595
00:21:34.650 --> 00:21:37.230
In other states, it might be completely different.
596
00:21:37.230 --> 00:21:39.300
And that's okay.
597
00:21:39.300 --> 00:21:42.023
Again, I was talking to a couple of the EHDI coordinators,
598
00:21:42.023 --> 00:21:45.270
and I don't know if Marcy or Linda are here now,
599
00:21:45.270 --> 00:21:47.517
and one of them, I think it was Linda,
600
00:21:47.517 --> 00:21:49.630
was telling this story about how one of her team was, like,
601
00:21:49.630 --> 00:21:52.380
driving out on this dirt country road
602
00:21:52.380 --> 00:21:54.027
to get to a family to be actually drive them
603
00:21:54.027 --> 00:21:56.910
and bring them to one of their appointments.
604
00:21:56.910 --> 00:21:58.140
I'm sure that every single one of you
605
00:21:58.140 --> 00:21:59.550
has those kinds of stories
606
00:21:59.550 --> 00:22:01.410
where you've done, like, extraordinary work
607
00:22:01.410 --> 00:22:03.930
to reach out to an individual family.
608
00:22:03.930 --> 00:22:04.847
And you're gonna keep doing that.
609
00:22:04.847 --> 00:22:06.349
That's the human part of our jobs
610
00:22:06.349 --> 00:22:08.796
and we're not gonna stop that.
611
00:22:08.796 --> 00:22:10.710
We also want to think at systems level.
612
00:22:10.710 --> 00:22:14.069
So what are the things that make the biggest difference?
613
00:22:14.069 --> 00:22:15.540
And you see, for example,
614
00:22:15.540 --> 00:22:17.550
health equity, legislative support.
615
00:22:17.550 --> 00:22:18.383
We have to give some examples of that
616
00:22:18.383 --> 00:22:20.730
for that to make sense.
617
00:22:20.730 --> 00:22:21.810
And so here's one example,
618
00:22:21.810 --> 00:22:25.713
and I think families are a huge untapped resource.
619
00:22:28.518 --> 00:22:30.090
The way we're starting to think about family engagement
620
00:22:30.090 --> 00:22:33.900
is these sort of four different levels of family engagement.
621
00:22:33.900 --> 00:22:36.420
And the first level is, we're talking about four,
622
00:22:36.420 --> 00:22:38.100
caregiver wellbeing.
623
00:22:38.100 --> 00:22:39.507
Well, why does that matter?
624
00:22:39.507 --> 00:22:44.040
Why do caregivers have to feel strong and self-efficacious?
625
00:22:44.040 --> 00:22:46.830
Because self-efficacy is the best predictor
626
00:22:46.830 --> 00:22:50.220
of families being able to do well by their children.
627
00:22:50.220 --> 00:22:51.510
Self-efficacy is the best predictor
628
00:22:51.510 --> 00:22:52.890
of following up for an appointment,
629
00:22:52.890 --> 00:22:54.266
for doing the things you need to do.
630
00:22:54.266 --> 00:22:55.950
So one of the first things we can do
631
00:22:55.950 --> 00:23:00.273
is make sure that individual caregivers, families feel well.
632
00:23:02.130 --> 00:23:02.963
The next step is,
633
00:23:02.963 --> 00:23:05.670
how can we help families in particular help their child,
634
00:23:05.670 --> 00:23:07.110
their individual child?
635
00:23:07.110 --> 00:23:08.730
What are the skills that they need?
636
00:23:08.730 --> 00:23:10.890
What are the things, the attitude they have to take on,
637
00:23:10.890 --> 00:23:12.136
the things they need to learn
638
00:23:12.136 --> 00:23:14.670
to be able to help their specific child
639
00:23:14.670 --> 00:23:16.642
gain language over time?
640
00:23:16.642 --> 00:23:18.300
And I know a lot of you do that work already
641
00:23:18.300 --> 00:23:20.515
or support others who do.
642
00:23:20.515 --> 00:23:22.680
But wouldn't it be great, though,
643
00:23:22.680 --> 00:23:24.540
if we could get to the next two levels?
644
00:23:24.540 --> 00:23:26.700
So the next one up from that is,
645
00:23:26.700 --> 00:23:29.580
how can they help families help other families
646
00:23:29.580 --> 00:23:30.603
help another child?
647
00:23:31.499 --> 00:23:33.120
Because you guys already know this.
648
00:23:33.120 --> 00:23:36.027
It's families that know how the system really works, right?
649
00:23:36.027 --> 00:23:37.657
I'm a pediatrician and I can say to the family,
650
00:23:37.657 --> 00:23:38.820
"Well, you need to go to the school
651
00:23:38.820 --> 00:23:41.010
and this is the way you get an IEP done."
652
00:23:41.010 --> 00:23:42.697
And then sometimes they can say,
653
00:23:42.697 --> 00:23:44.940
"Yeah, that's not it, Dr. Brosco.
654
00:23:44.940 --> 00:23:47.220
If you go on Tuesday, Sarah's there.
655
00:23:47.220 --> 00:23:48.240
She's gonna help you a lot.
656
00:23:48.240 --> 00:23:50.070
But if you go on a Wednesday and Tom is there,
657
00:23:50.070 --> 00:23:51.063
he's the worst.
658
00:23:51.930 --> 00:23:53.220
So you need to go on a Tuesday.
659
00:23:53.220 --> 00:23:54.270
And if Tom's there,
660
00:23:54.270 --> 00:23:55.770
we'll come back the next day until Sarah's there."
661
00:23:55.770 --> 00:23:57.750
They know how the systems really work.
662
00:23:57.750 --> 00:24:00.810
We understand it at a macro level,
663
00:24:00.810 --> 00:24:03.270
but a family's living it day to day.
664
00:24:03.270 --> 00:24:06.690
It can really be a huge support for getting stuff done.
665
00:24:08.223 --> 00:24:10.966
But shouldn't they be paid for that?
666
00:24:10.966 --> 00:24:13.259
I mean, if a family comes to see me in my office,
667
00:24:13.259 --> 00:24:15.505
I get paid by Medicare, right?
668
00:24:15.505 --> 00:24:16.338
So shouldn't we figure out a way,
669
00:24:16.338 --> 00:24:18.970
and I know some states are way ahead and doing this,
670
00:24:18.970 --> 00:24:22.080
can a family be certified as a community health worker
671
00:24:22.080 --> 00:24:23.580
and get paid a fee for service
672
00:24:23.580 --> 00:24:25.980
or an accountable care kind of way,
673
00:24:25.980 --> 00:24:27.030
just like I would be paid,
674
00:24:27.030 --> 00:24:30.000
or an audiologist or speech therapist or anyone else.
675
00:24:30.000 --> 00:24:32.760
So that would be a systems-level change,
676
00:24:32.760 --> 00:24:34.413
that might require working with Medicaid,
677
00:24:34.413 --> 00:24:36.770
that would empower a huge number of families
678
00:24:36.770 --> 00:24:37.603
to help each other.
679
00:24:37.603 --> 00:24:40.413
There's an army out there who we have not tapped into.
680
00:24:41.250 --> 00:24:42.350
It could be available.
681
00:24:43.260 --> 00:24:45.543
So if that's the third level, the family engagement,
682
00:24:45.543 --> 00:24:47.190
then the fourth one we're thinking about
683
00:24:47.190 --> 00:24:49.620
is at a policy level itself.
684
00:24:49.620 --> 00:24:51.600
And what are the things that families can do
685
00:24:51.600 --> 00:24:54.447
to make sure that the system's working well.
686
00:24:54.447 --> 00:24:57.730
And the youth and adults who are deaf or hard of hearing,
687
00:24:57.730 --> 00:25:00.177
what are the things that they can do at a legislative level?
688
00:25:00.177 --> 00:25:01.923
I told you I was in Florida state government
689
00:25:01.923 --> 00:25:04.050
when was in Tallahassee.
690
00:25:04.050 --> 00:25:05.940
When I would go to a senator or representative
691
00:25:05.940 --> 00:25:06.773
and talk to them,
692
00:25:06.773 --> 00:25:09.289
they were like "Yeah, whatever, Dr. Brosco."
693
00:25:09.289 --> 00:25:10.122
When a family,
694
00:25:10.122 --> 00:25:13.163
when a person with a disability came in and said,
695
00:25:13.163 --> 00:25:15.207
"Here's what really matters to me,"
696
00:25:16.137 --> 00:25:17.509
the legislators listened.
697
00:25:17.509 --> 00:25:19.470
They vote with their heart a lot more than they do
698
00:25:19.470 --> 00:25:22.680
with their, you know, policy one kind of ideas.
699
00:25:22.680 --> 00:25:24.980
So there's a lot of room to make change there.
700
00:25:26.790 --> 00:25:28.623
So what do we imagine might happen?
701
00:25:29.910 --> 00:25:32.110
This idea of continuing quality improvement.
702
00:25:33.000 --> 00:25:35.190
What does the pipeline look like in our state?
703
00:25:35.190 --> 00:25:36.390
Bring stakeholders together.
704
00:25:36.390 --> 00:25:38.160
Let's look at the data together.
705
00:25:38.160 --> 00:25:40.170
Let's figure out how to plug those leaks.
706
00:25:40.170 --> 00:25:42.060
What are the issues in our state?
707
00:25:42.060 --> 00:25:42.990
How is it going?
708
00:25:42.990 --> 00:25:44.670
Come back a year later.
709
00:25:44.670 --> 00:25:45.750
What's our next plan?
710
00:25:45.750 --> 00:25:49.503
Keep doing what we're doing, change, reorient?
711
00:25:51.930 --> 00:25:53.492
All right, so lastly,
712
00:25:53.492 --> 00:25:55.070
and you can see I'll be ending pretty early
713
00:25:55.070 --> 00:25:57.270
so you guys can bring up all your questions.
714
00:25:58.500 --> 00:25:59.983
How will we help to get there?
715
00:25:59.983 --> 00:26:03.600
So just a minute or two on current support from HRSA.
716
00:26:03.600 --> 00:26:04.433
Some of you may be new to the EHDI world,
717
00:26:04.433 --> 00:26:06.030
so just to be sure.
718
00:26:06.030 --> 00:26:08.340
So we have the 50 million grants
719
00:26:08.340 --> 00:26:10.050
to the states and the territories
720
00:26:10.050 --> 00:26:11.730
where we give you a huge amount of money,
721
00:26:11.730 --> 00:26:14.100
so much you don't know what to do with.
722
00:26:14.100 --> 00:26:14.933
Yeah, right.
723
00:26:14.933 --> 00:26:15.766
It's probably enough for, like,
724
00:26:15.766 --> 00:26:17.280
two FDDs and that's about it.
725
00:26:17.280 --> 00:26:18.280
We wish it was more.
726
00:26:19.775 --> 00:26:23.130
We do have the National Technical Resource Center.
727
00:26:23.130 --> 00:26:25.830
And Carl's team do a great job to bring us this meeting.
728
00:26:25.830 --> 00:26:26.970
It's really wonderful.
729
00:26:26.970 --> 00:26:28.110
I already talked before
730
00:26:28.110 --> 00:26:30.240
about how important family leadership is.
731
00:26:30.240 --> 00:26:34.109
And this is something across the board in MCHB.
732
00:26:34.109 --> 00:26:35.389
We really are gonna be investing more
733
00:26:35.389 --> 00:26:37.083
in the next couple of years.
734
00:26:38.940 --> 00:26:40.560
LEND, pediatric audiology.
735
00:26:40.560 --> 00:26:42.603
Any audiology LEND trainees here?
736
00:26:43.620 --> 00:26:44.520
A couple are here.
737
00:26:44.520 --> 00:26:45.720
Excellent.
738
00:26:45.720 --> 00:26:47.550
And Bob Fifer, I think, is here, right?
739
00:26:47.550 --> 00:26:49.980
So just so you know, I don't know Dr. Fifer.
740
00:26:49.980 --> 00:26:50.813
Bob, you here somewhere?
741
00:26:50.813 --> 00:26:51.837
I think you're here in the second one.
742
00:26:51.837 --> 00:26:52.920
There you are, excellent.
743
00:26:52.920 --> 00:26:53.753
So just so you know,
744
00:26:53.753 --> 00:26:56.237
when I was a LEND trainee a million years ago,
745
00:26:56.237 --> 00:26:58.713
I think it was 1994 or something,
746
00:26:59.730 --> 00:27:03.120
I'll never forget sitting in Bob's office and, like,
747
00:27:03.120 --> 00:27:05.040
okay, I didn't know what Part C was.
748
00:27:05.040 --> 00:27:06.690
I had never heard of anything.
749
00:27:06.690 --> 00:27:08.040
And there's Dr. Fifer.
750
00:27:08.040 --> 00:27:11.821
He's explaining bit by bit how policy works,
751
00:27:11.821 --> 00:27:13.371
what the world of EHDI is like.
752
00:27:14.460 --> 00:27:17.280
It's an extraordinary opportunity we have as trainees
753
00:27:17.280 --> 00:27:19.206
to learn about how things work.
754
00:27:19.206 --> 00:27:20.840
And the LEND training, right?
755
00:27:20.840 --> 00:27:23.763
So it's about interdisciplinary team,
756
00:27:24.690 --> 00:27:29.040
family professional partnerships, and systems-level change.
757
00:27:29.040 --> 00:27:31.920
It's so hard for people like me who are clinicians
758
00:27:31.920 --> 00:27:33.900
to think beyond that one person in front of me.
759
00:27:33.900 --> 00:27:35.640
So how do I make the system work
760
00:27:35.640 --> 00:27:38.070
for all the kids in front of me?
761
00:27:38.070 --> 00:27:40.020
So LEND training is a key part of that.
762
00:27:42.240 --> 00:27:43.343
So we have the TA centers,
763
00:27:43.343 --> 00:27:45.227
I talked a little bit about that already,
764
00:27:45.227 --> 00:27:47.430
and we see them as having an increasing role
765
00:27:47.430 --> 00:27:50.280
in helping move to the blueprint implementation approach.
766
00:27:51.570 --> 00:27:53.460
And then our partnerships.
767
00:27:53.460 --> 00:27:56.580
We traveled down to Atlanta,
768
00:27:56.580 --> 00:27:58.500
I think it was at the end of January,
769
00:27:58.500 --> 00:28:00.660
to meet with our colleagues at CDC.
770
00:28:00.660 --> 00:28:04.470
And two weeks ago, we met with our colleagues at OSERS
771
00:28:04.470 --> 00:28:07.205
to talk about Part C and how that fits in.
772
00:28:07.205 --> 00:28:09.300
And I think we're all on board.
773
00:28:09.300 --> 00:28:10.260
Now remember,
774
00:28:10.260 --> 00:28:14.250
as I was sort of doing, you know, federal legislation 101,
775
00:28:14.250 --> 00:28:18.390
any legislation says that MCBH HRSA does something,
776
00:28:18.390 --> 00:28:20.610
and it may say that CDC does something else,
777
00:28:20.610 --> 00:28:23.757
and IDDA says that Part C does something else,
778
00:28:23.757 --> 00:28:27.120
and so we each have slightly different legislative language,
779
00:28:27.120 --> 00:28:29.010
different funding lines.
780
00:28:29.010 --> 00:28:30.450
To the degree that we work together,
781
00:28:30.450 --> 00:28:32.670
we think will be really helpful for you guys.
782
00:28:32.670 --> 00:28:35.250
But it's not as easy as it looks.
783
00:28:35.250 --> 00:28:36.687
Everybody's on board, we want to do this,
784
00:28:36.687 --> 00:28:39.280
and I think you'll see some more
785
00:28:40.470 --> 00:28:43.042
outcomes of our efforts in the coming years.
786
00:28:43.042 --> 00:28:45.030
'Cause we really do want to make this work together.
787
00:28:45.030 --> 00:28:47.100
It'd be great if you had just one reporting system,
788
00:28:47.100 --> 00:28:48.270
one set of criteria, right?
789
00:28:48.270 --> 00:28:50.161
Make our lives a lot easier.
790
00:28:50.161 --> 00:28:53.850
I think one big message is that
791
00:28:53.850 --> 00:28:56.190
we want to get out of nickel-and-diming you guys,
792
00:28:56.190 --> 00:28:57.510
saying how many of this and how many of that,
793
00:28:57.510 --> 00:28:58.710
and you spent so time reporting
794
00:28:58.710 --> 00:29:00.870
and saying, "What really matters?
795
00:29:00.870 --> 00:29:01.770
Let's aim at the big stuff
796
00:29:01.770 --> 00:29:04.020
and tell us what we need to get there."
797
00:29:04.020 --> 00:29:05.470
That's what we're aiming for.
798
00:29:07.230 --> 00:29:09.003
So what's your role?
799
00:29:09.870 --> 00:29:12.443
As we have to make blueprint in the EHDI world.
800
00:29:37.210 --> 00:29:40.380
I set this talk to be only about 30 minutes or so,
801
00:29:40.380 --> 00:29:42.540
because I think it's during the question and answers
802
00:29:42.540 --> 00:29:45.000
where things really are most interesting.
803
00:29:45.000 --> 00:29:47.910
And if this group is anything like the last,
804
00:29:47.910 --> 00:29:49.080
we will be up against the hour
805
00:29:49.080 --> 00:29:50.640
and still have more questions.
806
00:29:50.640 --> 00:29:52.530
I want to hear what's wrong with what I said,
807
00:29:52.530 --> 00:29:54.060
what doesn't make sense.
808
00:29:54.060 --> 00:29:55.807
This is your big chance to challenge and say,
809
00:29:55.807 --> 00:29:58.170
"Hey, Brosco, that's just crazy."
810
00:29:58.170 --> 00:29:59.460
Okay, so thank you.
811
00:29:59.460 --> 00:30:01.508
You can bring up your questions.
812
00:30:01.508 --> 00:30:04.675
(audience applauding)
813
00:30:07.344 --> 00:30:08.177
Okay,
814
00:30:08.177 --> 00:30:09.780
so rather than trying to bring a mic around
815
00:30:09.780 --> 00:30:11.220
to this huge room,
816
00:30:11.220 --> 00:30:13.680
if you have a question, please come up right here
817
00:30:13.680 --> 00:30:16.470
and I'll be standing here and hand you the mic.
818
00:30:16.470 --> 00:30:20.100
Jeff prompted me to ask the same question
819
00:30:20.100 --> 00:30:21.810
I asked in the first session.
820
00:30:21.810 --> 00:30:26.085
So we've planned this so he'll have a good answer for you.
821
00:30:26.085 --> 00:30:28.494
(audience laughing)
822
00:30:28.494 --> 00:30:32.010
So he talked about maybe changing the language
823
00:30:32.010 --> 00:30:34.440
from Children with Special Health Care Needs
824
00:30:34.440 --> 00:30:37.050
to Children with Specific Health Care Needs.
825
00:30:37.050 --> 00:30:38.910
So tell us a little more about that, Jeff.
826
00:30:38.910 --> 00:30:40.470
And so I got to do this last time,
827
00:30:40.470 --> 00:30:42.218
so I'll be good at this one.
828
00:30:42.218 --> 00:30:43.566
Let's see how it goes.
829
00:30:43.566 --> 00:30:44.399
So I'm a historian.
830
00:30:44.399 --> 00:30:46.320
That's how I originally trained
831
00:30:46.320 --> 00:30:47.700
and thought about health policy.
832
00:30:47.700 --> 00:30:52.110
And did anyone know what the specific scientific terms
833
00:30:52.110 --> 00:30:54.750
intellectual disability were a hundred years ago?
834
00:30:54.750 --> 00:30:56.910
If this were a conference of intellectual disability
835
00:30:56.910 --> 00:31:00.300
and this were, you know, 1923,
836
00:31:00.300 --> 00:31:01.920
we would be saying these words
837
00:31:01.920 --> 00:31:04.081
that each corresponded into a different IQ.
838
00:31:04.081 --> 00:31:06.723
Idiot, imbecile, and moron.
839
00:31:08.040 --> 00:31:08.940
Greek terms that had
840
00:31:08.940 --> 00:31:10.703
different levels of intellectual disability.
841
00:31:10.703 --> 00:31:13.890
And now you say that's crazy, it's absurd.
842
00:31:13.890 --> 00:31:16.590
And the overall category was called feeble-minded.
843
00:31:16.590 --> 00:31:19.650
And in the mid-20th century, 1950s and 1960s,
844
00:31:19.650 --> 00:31:22.290
it was basically the beginning
845
00:31:22.290 --> 00:31:24.000
of the disability rights movement,
846
00:31:24.000 --> 00:31:26.250
driven largely by families in those days.
847
00:31:26.250 --> 00:31:29.400
And the Kennedy family were a big champion for this
848
00:31:29.400 --> 00:31:32.310
and really gave a huge amount to change federal policy.
849
00:31:32.310 --> 00:31:33.143
And in those days,
850
00:31:33.143 --> 00:31:36.570
the key progressive term was mental retardation.
851
00:31:36.570 --> 00:31:38.923
So if you said that, you were demonstrating a new word
852
00:31:38.923 --> 00:31:42.240
like those old-fashioned folks saying "idiot" or "moron."
853
00:31:42.240 --> 00:31:43.470
You were talking about mental retardation
854
00:31:43.470 --> 00:31:45.420
and how are you gonna fix that?
855
00:31:45.420 --> 00:31:46.253
And now, of course,
856
00:31:46.253 --> 00:31:47.540
I can barely even say that word out loud.
857
00:31:47.540 --> 00:31:49.920
It makes me cringe.
858
00:31:49.920 --> 00:31:53.010
Every generation comes up with its own language
859
00:31:53.010 --> 00:31:55.620
to understand a whole range of things.
860
00:31:55.620 --> 00:31:56.730
And that's okay.
861
00:31:56.730 --> 00:32:00.240
And when we started using the word special 20 years ago
862
00:32:00.240 --> 00:32:02.340
for Children and Youth with Special Health Care Needs,
863
00:32:02.340 --> 00:32:05.310
it made perfect sense in the community.
864
00:32:05.310 --> 00:32:06.143
And by the way,
865
00:32:06.143 --> 00:32:08.280
the word "special" modifies "health care need"
866
00:32:08.280 --> 00:32:10.650
and not the child themselves.
867
00:32:10.650 --> 00:32:13.110
But it's clearly taken on a negative connotation.
868
00:32:13.110 --> 00:32:16.043
So we can't change the legislation easily, right?
869
00:32:16.043 --> 00:32:18.180
I mean, that takes a big lift.
870
00:32:18.180 --> 00:32:20.670
But we're thinking continuing to use the same acronym,
871
00:32:20.670 --> 00:32:23.730
Children with Special Health Care Needs, the CYSHCN acronym.
872
00:32:23.730 --> 00:32:26.070
But thinking of it as a specific health care need,
873
00:32:26.070 --> 00:32:27.689
'cause that's really more accurate, right?
874
00:32:27.689 --> 00:32:28.522
I think each child
875
00:32:28.522 --> 00:32:30.510
has a different specific kind of health care need,
876
00:32:30.510 --> 00:32:32.777
or in the general community.
877
00:32:35.340 --> 00:32:39.421
Hi, I'm Annette from Alaska.
878
00:32:39.421 --> 00:32:42.450
And I'm wondering, with your diversity,
879
00:32:42.450 --> 00:32:44.790
when we did the research in our state,
880
00:32:44.790 --> 00:32:48.423
we found that people who are remote or rural,
881
00:32:50.670 --> 00:32:52.170
they have way more challenges.
882
00:32:52.170 --> 00:32:54.360
And, like, a story of someone
883
00:32:54.360 --> 00:32:59.190
who went to the ends to deliver services for our state
884
00:32:59.190 --> 00:33:01.200
would be an audiologist who got on a plane
885
00:33:01.200 --> 00:33:03.812
with her two-year-old 'cause there was not good...
886
00:33:03.812 --> 00:33:06.630
Her childcare wasn't available that day in her community,
887
00:33:06.630 --> 00:33:09.720
and flew to an island in the middle of the Chukchi Sea
888
00:33:09.720 --> 00:33:12.730
to see a community that had no audiologist.
889
00:33:12.730 --> 00:33:14.040
So if she didn't come,
890
00:33:14.040 --> 00:33:16.740
no one would be coming again for three more months.
891
00:33:16.740 --> 00:33:18.120
And then she got weathered in
892
00:33:18.120 --> 00:33:19.710
and ended up staying there for six days
893
00:33:19.710 --> 00:33:20.543
with her two-year-old
894
00:33:20.543 --> 00:33:23.040
until she could get off the island.
895
00:33:23.040 --> 00:33:25.258
So the people who, like,
896
00:33:25.258 --> 00:33:29.670
live in American Samoa and Hawaii and Micronesia,
897
00:33:29.670 --> 00:33:33.600
and even, you know, rural states like Wyoming
898
00:33:33.600 --> 00:33:34.433
and stuff like that,
899
00:33:34.433 --> 00:33:37.050
they go through things that some people in the city
900
00:33:37.050 --> 00:33:40.317
may not think are diverse and need outreach.
901
00:33:40.317 --> 00:33:43.300
But it's our experience that that's hugely
902
00:33:44.700 --> 00:33:48.699
a diverse family who needs our special outreach.
903
00:33:48.699 --> 00:33:50.610
Thank you for sharing that story, Annette.
904
00:33:50.610 --> 00:33:54.570
And this is why I'm very deliberate
905
00:33:54.570 --> 00:33:55.713
when I talk about, you know,
906
00:33:55.713 --> 00:33:56.610
when we're thinking about
907
00:33:56.610 --> 00:33:58.410
the population across your state, right?
908
00:33:58.410 --> 00:34:01.230
What's the total population achieving language milestones?
909
00:34:01.230 --> 00:34:03.287
But then one of the issues may be your state,
910
00:34:03.287 --> 00:34:05.207
'cause they could even be different in Rhode Island
911
00:34:05.207 --> 00:34:06.064
where I grew up,
912
00:34:06.064 --> 00:34:07.590
as they will be in Alaska.
913
00:34:07.590 --> 00:34:09.030
And that's perfectly appropriate.
914
00:34:09.030 --> 00:34:12.630
So for your state, it might be distance, right?
915
00:34:12.630 --> 00:34:13.980
And not just distance in general,
916
00:34:13.980 --> 00:34:15.377
but distance of travel time.
917
00:34:15.377 --> 00:34:17.100
And so we want you to be able to say
918
00:34:17.100 --> 00:34:19.560
this is a systematic issue in our state.
919
00:34:19.560 --> 00:34:21.900
We need to come up with incredible technology
920
00:34:21.900 --> 00:34:22.733
that allows, you know,
921
00:34:22.733 --> 00:34:23.970
telehealth to figure stuff out, right?
922
00:34:23.970 --> 00:34:25.620
And have you guys seen this?
923
00:34:25.620 --> 00:34:26.453
Probably you have.
924
00:34:26.453 --> 00:34:28.230
Parents can now use a cell phone
925
00:34:28.230 --> 00:34:30.330
to figure out whether they have middle ear effusion.
926
00:34:30.330 --> 00:34:31.830
I mean, who knows what the future will bring
927
00:34:31.830 --> 00:34:33.750
to prevent the by plane,
928
00:34:33.750 --> 00:34:37.200
taking your two-year-old across a sea.
929
00:34:37.200 --> 00:34:39.030
In the meantime, you're absolutely right.
930
00:34:39.030 --> 00:34:41.250
We need to think about each of our states differently
931
00:34:41.250 --> 00:34:43.080
so we meet the needs of their population.
932
00:34:43.080 --> 00:34:43.913
Thank you.
933
00:34:49.440 --> 00:34:50.273
Hi there. Good morning.
934
00:34:50.273 --> 00:34:51.510
Good morning.
935
00:34:51.510 --> 00:34:53.220
What an excellent presentation.
936
00:34:53.220 --> 00:34:54.510
So great to see you today
937
00:34:54.510 --> 00:34:58.260
and nice to see the emphasis on health equity
938
00:34:58.260 --> 00:35:00.783
and that language for deaf and hard of hearing children
939
00:35:00.783 --> 00:35:03.240
from language acquisition.
940
00:35:03.240 --> 00:35:04.500
So great to see that.
941
00:35:04.500 --> 00:35:05.910
Thank you so much for the leadership
942
00:35:05.910 --> 00:35:08.250
and I look forward to a future with you.
943
00:35:08.250 --> 00:35:11.313
My name is Tawny Holmes Hlibok.
944
00:35:12.240 --> 00:35:14.580
And I am the executive director
945
00:35:14.580 --> 00:35:17.910
for all child conference coordinators
946
00:35:17.910 --> 00:35:21.300
for deaf and hard of hearing in the US, CEASD.
947
00:35:21.300 --> 00:35:24.000
And also I'm a faculty member of Gallaudet University.
948
00:35:24.000 --> 00:35:26.280
I teach deaf studies.
949
00:35:26.280 --> 00:35:29.400
My question to you today is, looking at one of your slides,
950
00:35:29.400 --> 00:35:33.480
you show about $200 million for education costs.
951
00:35:33.480 --> 00:35:36.570
And I'm wondering can you talk about that?
952
00:35:36.570 --> 00:35:38.520
What are your plans for the bureau,
953
00:35:38.520 --> 00:35:42.690
working with US Department of Ed to figure out those costs?
954
00:35:42.690 --> 00:35:45.630
Can you tell me, what about those numbers?
955
00:35:45.630 --> 00:35:47.040
What are you considering?
956
00:35:47.040 --> 00:35:49.420
What are factors that you're looking at
957
00:35:50.490 --> 00:35:53.490
when it comes to the targets for school districts
958
00:35:53.490 --> 00:35:55.980
that are currently trying to move up.
959
00:35:55.980 --> 00:35:59.790
And those dollars, the costs are there,
960
00:35:59.790 --> 00:36:04.790
and it's related to language deprivation and the court cases
961
00:36:04.920 --> 00:36:08.950
that are currently in the Perez court case
962
00:36:08.950 --> 00:36:10.550
about the school district there.
963
00:36:12.750 --> 00:36:14.723
Do you live and work in DC?
964
00:36:16.844 --> 00:36:17.677
I do.
965
00:36:17.677 --> 00:36:19.140
Excellent, 'cause I go every couple of weeks.
966
00:36:19.140 --> 00:36:19.973
So I would love to meet with you
967
00:36:19.973 --> 00:36:20.806
and talk with you more about this
968
00:36:20.806 --> 00:36:22.927
'cause clearly you have a lot of expertise.
969
00:36:24.390 --> 00:36:27.933
So let's talk about some of the issues that you brought up.
970
00:36:29.550 --> 00:36:32.190
First, where's the money, right?
971
00:36:32.190 --> 00:36:35.880
So you mentioned the $200 million in the education system,
972
00:36:35.880 --> 00:36:37.177
and I think that number,
973
00:36:37.177 --> 00:36:39.690
and my team here can tell me if I'm right or not,
974
00:36:39.690 --> 00:36:41.070
the way that's probably calculated
975
00:36:41.070 --> 00:36:43.500
is the amount of money that would have been spent
976
00:36:43.500 --> 00:36:46.140
on special education classes that didn't have to be spent
977
00:36:46.140 --> 00:36:48.210
because kids had acquired greater language.
978
00:36:48.210 --> 00:36:49.440
That's my guess.
979
00:36:49.440 --> 00:36:51.420
I'll check with that and make sure that's true.
980
00:36:51.420 --> 00:36:53.640
And that points to one thing that's really important
981
00:36:53.640 --> 00:36:56.070
in a lot of child health policy,
982
00:36:56.070 --> 00:36:59.040
which is to the degree that what we do works,
983
00:36:59.040 --> 00:37:03.990
we save money for other systems and maybe things later on.
984
00:37:03.990 --> 00:37:05.880
And that's our real problem.
985
00:37:05.880 --> 00:37:08.310
That across the board of child health policy,
986
00:37:08.310 --> 00:37:10.260
it's not a self-contained system.
987
00:37:10.260 --> 00:37:12.240
And so there's often not the incentives
988
00:37:12.240 --> 00:37:14.310
that there should be for financial wellbeing.
989
00:37:14.310 --> 00:37:16.890
Now we all make the argument in a variety of ways
990
00:37:16.890 --> 00:37:19.230
that early intervention is good for society,
991
00:37:19.230 --> 00:37:21.180
and we need to think about things like Medicaid
992
00:37:21.180 --> 00:37:23.700
and the work that we do as investments in our children
993
00:37:23.700 --> 00:37:25.800
and investments in society.
994
00:37:25.800 --> 00:37:29.310
So I agree we can look at that more carefully.
995
00:37:29.310 --> 00:37:33.630
The particulars about education and special education,
996
00:37:33.630 --> 00:37:35.130
I think we should defer for another time
997
00:37:35.130 --> 00:37:36.600
'cause I'm definitely not an expert in that.
998
00:37:36.600 --> 00:37:39.570
And so that would be something we can talk more about.
999
00:37:39.570 --> 00:37:41.040
But I wanna bring up something else
1000
00:37:41.040 --> 00:37:42.300
about where the money is.
1001
00:37:42.300 --> 00:37:43.410
And that is, you know,
1002
00:37:43.410 --> 00:37:45.930
our EHDI program is worth $18 million.
1003
00:37:45.930 --> 00:37:48.360
DOE's budget is huge.
1004
00:37:48.360 --> 00:37:50.670
Do you guys know what the budget is for Medicaid
1005
00:37:50.670 --> 00:37:52.830
for children in our country?
1006
00:37:52.830 --> 00:37:56.040
At the federal level, it's 100 billion, with a B.
1007
00:37:56.040 --> 00:37:57.210
If you added the state component,
1008
00:37:57.210 --> 00:37:59.733
it's probably like 170 billion, with a B.
1009
00:38:00.720 --> 00:38:02.820
Okay, that's huge.
1010
00:38:02.820 --> 00:38:05.512
So when we're thinking about,
1011
00:38:05.512 --> 00:38:07.650
"I'm an EHDI coordinator, or I work in a state,
1012
00:38:07.650 --> 00:38:08.640
and I don't have enough money
1013
00:38:08.640 --> 00:38:11.580
to do all the things that Brosco says I'm supposed to do,"
1014
00:38:11.580 --> 00:38:14.763
true, but Medicaid does.
1015
00:38:16.080 --> 00:38:17.700
There is a lot of money in the system.
1016
00:38:17.700 --> 00:38:21.540
So what are the things that we can do that can turn things
1017
00:38:21.540 --> 00:38:24.750
in a way that leads to better outcomes for our kids?
1018
00:38:24.750 --> 00:38:25.583
By the way,
1019
00:38:25.583 --> 00:38:28.353
how many of you work with your state Title 5 agency?
1020
00:38:30.097 --> 00:38:31.140
Ooh, that's worrisome.
1021
00:38:31.140 --> 00:38:32.670
Okay, some hands are going up.
1022
00:38:32.670 --> 00:38:35.760
So MCHB gives a block grant to every state
1023
00:38:35.760 --> 00:38:37.470
for children with special health care needs,
1024
00:38:37.470 --> 00:38:38.310
and they're the ones
1025
00:38:38.310 --> 00:38:40.650
that shouldn't really be well-connected to Part C,
1026
00:38:40.650 --> 00:38:42.120
to Medicaid and others.
1027
00:38:42.120 --> 00:38:43.680
So they should be one of your key partners
1028
00:38:43.680 --> 00:38:45.840
as you're thinking about how we change things.
1029
00:38:45.840 --> 00:38:50.840
So what could we do in that $100 billion world of Medicaid
1030
00:38:51.090 --> 00:38:52.980
and move things in the right direction?
1031
00:38:52.980 --> 00:38:55.050
Well, that $100 billion,
1032
00:38:55.050 --> 00:38:58.350
most of it goes to managed care organizations,
1033
00:38:58.350 --> 00:39:00.243
and they get paid for outcomes, by and large.
1034
00:39:00.243 --> 00:39:02.940
They get penalties, financial penalty,
1035
00:39:02.940 --> 00:39:04.950
or financial incentives
1036
00:39:04.950 --> 00:39:08.010
for things like vaccination rates for two-year-olds,
1037
00:39:08.010 --> 00:39:11.070
number of well-child care visits for 13-year-olds.
1038
00:39:11.070 --> 00:39:16.070
But suppose one of those measures was language ability
1039
00:39:16.080 --> 00:39:17.160
at three years of age,
1040
00:39:17.160 --> 00:39:19.610
or kindergarten readiness or something like that.
1041
00:39:20.460 --> 00:39:22.680
Suddenly, then, Medicaid would have a huge,
1042
00:39:22.680 --> 00:39:24.150
those managed care organizations,
1043
00:39:24.150 --> 00:39:25.740
would huge incentive
1044
00:39:25.740 --> 00:39:27.930
for making sure that many of the things we do
1045
00:39:27.930 --> 00:39:30.130
are well reimbursed and in fact are working.
1046
00:39:31.950 --> 00:39:34.653
Just one specific example of how that might play out.
1047
00:39:35.987 --> 00:39:39.360
I was talking to our sickle cell friends a couple weeks ago
1048
00:39:39.360 --> 00:39:43.203
and one physician was telling me about how, in Missouri,
1049
00:39:44.310 --> 00:39:46.267
she was talking to the hospital administrators,
1050
00:39:46.267 --> 00:39:47.520
"We need a social worker.
1051
00:39:47.520 --> 00:39:49.230
Why can't we get a social worker for our hospital?
1052
00:39:49.230 --> 00:39:51.690
We needed these kids, but you discharged them."
1053
00:39:51.690 --> 00:39:53.490
Couldn't do it for years and years and years.
1054
00:39:53.490 --> 00:39:55.683
And then the state changed its way
1055
00:39:55.683 --> 00:39:58.260
that they measured hospital performance
1056
00:39:58.260 --> 00:40:02.250
to include readmission of a child with sickle cell disease
1057
00:40:02.250 --> 00:40:03.210
within 30 days.
1058
00:40:03.210 --> 00:40:04.476
'Cause if they readmitted in 30 days,
1059
00:40:04.476 --> 00:40:06.300
it means you didn't do a good job.
1060
00:40:06.300 --> 00:40:09.050
Suddenly, the hospital found money for a social worker.
1061
00:40:11.370 --> 00:40:14.310
So part of what we at MCHB
1062
00:40:14.310 --> 00:40:17.130
are hoping to work with you guys in your world
1063
00:40:17.130 --> 00:40:18.630
where you don't have enough money resources
1064
00:40:18.630 --> 00:40:21.630
to say, "Well, where are things happening that matter?"
1065
00:40:21.630 --> 00:40:23.580
In the United States,
1066
00:40:23.580 --> 00:40:26.640
it's state health policy that matters for kids.
1067
00:40:26.640 --> 00:40:29.073
So state Medicaid offices with a lot of the DOE,
1068
00:40:29.073 --> 00:40:32.790
Department of Education stuff, part C, Part B,
1069
00:40:32.790 --> 00:40:34.590
a lot of it happens at the state level.
1070
00:40:34.590 --> 00:40:36.450
So figuring out ways to get leverage
1071
00:40:36.450 --> 00:40:37.910
and work with your friends there
1072
00:40:37.910 --> 00:40:41.010
is a big part of what can make a huge impact
1073
00:40:41.010 --> 00:40:42.310
for children and families.
1074
00:40:43.590 --> 00:40:44.638
So, I'm sorry, I was talking everybody else.
1075
00:40:44.638 --> 00:40:45.471
Thank you.
1076
00:40:45.471 --> 00:40:46.304
That's a great question.
1077
00:40:48.000 --> 00:40:48.833
I appreciate that.
1078
00:40:48.833 --> 00:40:51.570
And I just wanted to mention as well before I walk away,
1079
00:40:51.570 --> 00:40:52.950
how do you get there?
1080
00:40:52.950 --> 00:40:55.920
We'd definitely be calculating care.
1081
00:40:55.920 --> 00:40:57.840
Because when we look at the real cost
1082
00:40:57.840 --> 00:40:59.460
of supporting language access
1083
00:40:59.460 --> 00:41:01.260
for deaf and hard of hearing children,
1084
00:41:01.260 --> 00:41:04.080
Medicaid technical support, it doesn't, you know,
1085
00:41:04.080 --> 00:41:05.970
all of that is about support.
1086
00:41:05.970 --> 00:41:07.980
Interpreting, captioning, all of that,
1087
00:41:07.980 --> 00:41:11.340
it goes into the expenses, and it's all about access.
1088
00:41:11.340 --> 00:41:14.790
So if we look at that, if we remove that 200, I'm not sure,
1089
00:41:14.790 --> 00:41:16.920
but if there would be more money spent for that,
1090
00:41:16.920 --> 00:41:18.660
then all deaf and hard of hearing children
1091
00:41:18.660 --> 00:41:22.050
would have access, regardless of language use,
1092
00:41:22.050 --> 00:41:23.910
whether it's signed or spoken language.
1093
00:41:23.910 --> 00:41:26.220
Full language access is what's important.
1094
00:41:26.220 --> 00:41:27.240
Thank you very much.
1095
00:41:27.240 --> 00:41:28.790
With you all the way, agreed.
1096
00:41:29.760 --> 00:41:30.593
Thank you.
1097
00:41:33.980 --> 00:41:37.110
So thank you for celebrating our successes.
1098
00:41:37.110 --> 00:41:39.030
Thank you very much for acknowledging
1099
00:41:39.030 --> 00:41:40.127
that all states are different
1100
00:41:40.127 --> 00:41:42.840
and at different places in our journey
1101
00:41:42.840 --> 00:41:44.670
in reaching the goals.
1102
00:41:44.670 --> 00:41:45.677
The one slide that jumped out to me
1103
00:41:45.677 --> 00:41:48.150
that I have a question about is,
1104
00:41:48.150 --> 00:41:49.167
I am an EHDI coordinator
1105
00:41:49.167 --> 00:41:51.350
and I'm worried about the long-term outcome
1106
00:41:51.350 --> 00:41:53.340
of being able to measure the increase
1107
00:41:53.340 --> 00:41:55.800
of the percentage of three-year-old children
1108
00:41:55.800 --> 00:41:59.130
achieving language acquisition milestones.
1109
00:41:59.130 --> 00:42:02.490
Because as an EHDI coordinator, at least in my state,
1110
00:42:02.490 --> 00:42:04.890
I don't have access to that data.
1111
00:42:04.890 --> 00:42:06.990
Legislatively, I don't.
1112
00:42:06.990 --> 00:42:08.580
My system doesn't.
1113
00:42:08.580 --> 00:42:10.920
All those language scores
1114
00:42:10.920 --> 00:42:13.710
are held by independent contractors in our community.
1115
00:42:13.710 --> 00:42:17.040
Our Part C and our Part B do not collect those,
1116
00:42:17.040 --> 00:42:19.170
nor is there a system to collect those.
1117
00:42:19.170 --> 00:42:22.050
So for that to be an outcome,
1118
00:42:22.050 --> 00:42:23.970
I'm having a little bit of heart palpitations
1119
00:42:23.970 --> 00:42:26.040
of how am I gonna collect that data
1120
00:42:26.040 --> 00:42:28.650
if that's the expectation.
1121
00:42:28.650 --> 00:42:30.720
And is that really my expectation
1122
00:42:30.720 --> 00:42:33.183
or should that be Part B and Part C?
1123
00:42:34.110 --> 00:42:34.943
Yeah.
1124
00:42:34.943 --> 00:42:37.080
Anyone else worry about that?
1125
00:42:37.080 --> 00:42:38.580
Everyone is, right?
1126
00:42:38.580 --> 00:42:40.680
This is a huge thank you for raising this question.
1127
00:42:40.680 --> 00:42:41.790
We know this isn't easy,
1128
00:42:41.790 --> 00:42:43.290
we know it's not gonna happen tomorrow,
1129
00:42:43.290 --> 00:42:46.352
but I think it's a place that we need to get to.
1130
00:42:46.352 --> 00:42:48.510
We at the federal level can definitely push.
1131
00:42:48.510 --> 00:42:52.260
And so we're meeting with our friends in DOE,
1132
00:42:52.260 --> 00:42:53.640
our friends in CDC,
1133
00:42:53.640 --> 00:42:54.870
I think we're all on the same page
1134
00:42:54.870 --> 00:42:56.753
that we need to move in this direction.
1135
00:42:58.050 --> 00:43:02.340
I'll also say that imperfect data is better than nothing,
1136
00:43:02.340 --> 00:43:05.040
and even if the particular measures aren't so good,
1137
00:43:05.040 --> 00:43:08.547
or the amount of data you have isn't so good.
1138
00:43:08.547 --> 00:43:11.100
And this is based on the experience I've had with
1139
00:43:11.100 --> 00:43:13.320
when you start talking about this is what we want to get to,
1140
00:43:13.320 --> 00:43:14.820
it changes your behavior.
1141
00:43:14.820 --> 00:43:16.020
So let me just give you
1142
00:43:16.020 --> 00:43:17.790
one example that's a little bit different.
1143
00:43:17.790 --> 00:43:20.100
So I mentioned before, LEND director in Miami,
1144
00:43:20.100 --> 00:43:22.440
at the University of Miami Management Center.
1145
00:43:22.440 --> 00:43:24.720
And for years, as part of our LEND grant,
1146
00:43:24.720 --> 00:43:28.413
we were measuring how many trainees, how many publications,
1147
00:43:29.280 --> 00:43:31.470
how many clients, families came through.
1148
00:43:31.470 --> 00:43:32.520
That was our measure of success.
1149
00:43:32.520 --> 00:43:35.550
And we said, "But is this really having an impact?"
1150
00:43:35.550 --> 00:43:37.020
So eight or nine years ago,
1151
00:43:37.020 --> 00:43:39.030
we started working with Overtown and East Little Havana,
1152
00:43:39.030 --> 00:43:41.217
which are two communities right next to our hospital.
1153
00:43:41.217 --> 00:43:43.767
And we said, "We want to start working with them
1154
00:43:43.767 --> 00:43:46.410
and measure, at a population level,
1155
00:43:46.410 --> 00:43:49.311
kindergarten readiness and high school graduation."
1156
00:43:49.311 --> 00:43:51.570
'Cause that was kind of measurements that were out there.
1157
00:43:51.570 --> 00:43:52.770
And so our leadership
1158
00:43:52.770 --> 00:43:55.050
sort of combined on strategic planning.
1159
00:43:55.050 --> 00:43:55.950
When we got a lot of grants,
1160
00:43:55.950 --> 00:43:58.110
we'd make sure that they were in those communities.
1161
00:43:58.110 --> 00:44:00.180
We helped them get grants that made sense
1162
00:44:00.180 --> 00:44:01.950
in their particular context.
1163
00:44:01.950 --> 00:44:03.240
And over time,
1164
00:44:03.240 --> 00:44:05.490
we did show that actually there were improvements,
1165
00:44:05.490 --> 00:44:07.230
dramatic improvements in child development
1166
00:44:07.230 --> 00:44:08.430
for kindergarten readiness,
1167
00:44:08.430 --> 00:44:10.470
not so much high school graduation.
1168
00:44:10.470 --> 00:44:11.807
It probably had nothing to do with what we did.
1169
00:44:11.807 --> 00:44:14.790
It was probably gentrification and a bunch of other stuff.
1170
00:44:14.790 --> 00:44:16.650
Measurement error.
1171
00:44:16.650 --> 00:44:19.110
What mattered was it changed what we were doing.
1172
00:44:19.110 --> 00:44:21.450
It changed the way we thought about our work.
1173
00:44:21.450 --> 00:44:24.240
We started thinking about population-level impact
1174
00:44:24.240 --> 00:44:26.190
for child readiness
1175
00:44:26.190 --> 00:44:28.560
and not just about what grant to get next.
1176
00:44:28.560 --> 00:44:31.620
So, yes, some states where it's gonna be almost impossible,
1177
00:44:31.620 --> 00:44:32.970
others will be easier.
1178
00:44:32.970 --> 00:44:34.110
We need to keep pushing.
1179
00:44:34.110 --> 00:44:36.510
And if all the feds are on the same page,
1180
00:44:36.510 --> 00:44:37.743
that can certainly help.
1181
00:44:38.790 --> 00:44:40.117
But if your state starts thinking,
1182
00:44:40.117 --> 00:44:42.930
"Well, that's our goal," right,
1183
00:44:42.930 --> 00:44:47.520
not merely any one piece of this, but the overall goal,
1184
00:44:47.520 --> 00:44:48.690
we hope that this changes the behavior
1185
00:44:48.690 --> 00:44:50.490
in a way that it has a bigger impact.
1186
00:44:50.490 --> 00:44:51.605
It may take five years.
1187
00:44:51.605 --> 00:44:53.340
It may take 10 years.
1188
00:44:53.340 --> 00:44:54.524
You're still worried.
So thank you.
1189
00:44:54.524 --> 00:44:55.888
Well, of course I'm still worried,
1190
00:44:55.888 --> 00:44:58.490
but thank you for looking at that.
1191
00:44:58.490 --> 00:45:01.620
It needs to be top down and bottom up simultaneous.
1192
00:45:01.620 --> 00:45:03.180
And not for today's discussion,
1193
00:45:03.180 --> 00:45:05.580
but can we please have a discussion about,
1194
00:45:05.580 --> 00:45:07.710
are there even tools that are appropriate
1195
00:45:07.710 --> 00:45:09.960
for children with atypical hearing?
1196
00:45:09.960 --> 00:45:12.420
Because you can't give the same test
1197
00:45:12.420 --> 00:45:15.360
to a typical hearing child and an atypical hearing child.
1198
00:45:15.360 --> 00:45:17.430
Yeah, and as a development pediatrician,
1199
00:45:17.430 --> 00:45:21.150
I have some sense of how complex measurement can be,
1200
00:45:21.150 --> 00:45:24.360
but I defer to the folks here and others beyond this world
1201
00:45:24.360 --> 00:45:26.700
to say, "What makes the most sense?"
1202
00:45:26.700 --> 00:45:27.840
Again, I would say that,
1203
00:45:27.840 --> 00:45:32.250
even if you've only got one regional Part C office
1204
00:45:32.250 --> 00:45:34.200
to share some of their data with you,
1205
00:45:34.200 --> 00:45:36.900
you'd start saying, "Okay, this is what really matters."
1206
00:45:36.900 --> 00:45:40.020
And even if it's not the perfect outcome measure, you know,
1207
00:45:40.020 --> 00:45:42.480
you may say that PLS-5 is no good for this population,
1208
00:45:42.480 --> 00:45:43.620
doesn't make any sense.
1209
00:45:43.620 --> 00:45:46.200
But still, you know, looking at language acquisition
1210
00:45:46.200 --> 00:45:48.603
and not merely steps one way.
1211
00:45:49.843 --> 00:45:50.676
Hi, Jeff.
1212
00:45:50.676 --> 00:45:51.509
Hi.
1213
00:45:51.509 --> 00:45:53.440
I'm Janet DesGeorges from Hands & Voices.
1214
00:45:53.440 --> 00:45:54.273
Hi.
1215
00:45:54.273 --> 00:45:55.383
When we first met,
1216
00:45:56.220 --> 00:45:58.200
you said, "If our vision doesn't scare us,
1217
00:45:58.200 --> 00:45:59.130
it's not high enough."
1218
00:45:59.130 --> 00:46:02.811
So I really appreciate today's presentation.
1219
00:46:02.811 --> 00:46:03.644
Good.
1220
00:46:03.644 --> 00:46:04.770
I'm still trying to find the question
1221
00:46:04.770 --> 00:46:07.423
at the end of my comment. (laughs)
1222
00:46:08.700 --> 00:46:10.350
While you're changing your letterhead
1223
00:46:10.350 --> 00:46:12.060
from special to specific,
1224
00:46:12.060 --> 00:46:15.063
you might change the word health care to life course.
1225
00:46:15.063 --> 00:46:18.450
And, you know, I'm making that point around deafness,
1226
00:46:18.450 --> 00:46:19.530
which we always...
1227
00:46:19.530 --> 00:46:21.660
I love that you ask us questions in the beginning
1228
00:46:21.660 --> 00:46:23.407
and we ask ourselves a lot of the time,
1229
00:46:23.407 --> 00:46:27.180
"In context to public health, how is deafness different?"
1230
00:46:27.180 --> 00:46:30.240
And when you think about the medical model,
1231
00:46:30.240 --> 00:46:34.050
the community self-identity model of deaf children,
1232
00:46:34.050 --> 00:46:35.880
and the education model,
1233
00:46:35.880 --> 00:46:38.580
what I like about your idea about data collection
1234
00:46:38.580 --> 00:46:41.310
is you're asking a system to collect data
1235
00:46:41.310 --> 00:46:45.120
from another system that isn't talking to each other.
1236
00:46:45.120 --> 00:46:47.070
So data is a good example.
1237
00:46:47.070 --> 00:46:49.820
But the point being of all of this
1238
00:46:49.820 --> 00:46:52.410
is that families are moving through these systems,
1239
00:46:52.410 --> 00:46:56.580
from health to community to education.
1240
00:46:56.580 --> 00:47:00.930
And so we have to find a way to continue that flow.
1241
00:47:00.930 --> 00:47:02.490
So my question,
1242
00:47:02.490 --> 00:47:03.660
you had mentioned at the end,
1243
00:47:03.660 --> 00:47:07.110
your partnership, you had met with OSERS, or was it OSER?
1244
00:47:07.110 --> 00:47:08.520
That was really great to hear
1245
00:47:08.520 --> 00:47:10.350
and I'd just be interested in maybe
1246
00:47:10.350 --> 00:47:12.780
what some of the topics you're discussing right now
1247
00:47:12.780 --> 00:47:17.780
between sort of the medical MCH and education
1248
00:47:18.420 --> 00:47:20.100
for the OSERS, thanks.
1249
00:47:20.100 --> 00:47:21.390
Oh, man, there's so many rich things.
1250
00:47:21.390 --> 00:47:22.223
Don't walk away, Janet,
1251
00:47:22.223 --> 00:47:24.030
'cause you might have to remind me in case I miss something.
1252
00:47:24.030 --> 00:47:25.580
So stay right there, thank you.
1253
00:47:26.430 --> 00:47:29.160
So one quick thing, it's on the blueprint more generally.
1254
00:47:29.160 --> 00:47:30.510
So as I said before,
1255
00:47:30.510 --> 00:47:33.420
we have legislative authority around sickle cell disease
1256
00:47:33.420 --> 00:47:35.970
and hemophilia and deaf and hard of hearing,
1257
00:47:35.970 --> 00:47:38.340
but not for 12,000 other conditions.
1258
00:47:38.340 --> 00:47:41.400
So we're also working on the blueprint more generally.
1259
00:47:41.400 --> 00:47:44.310
And the idea of the family's journey, right,
1260
00:47:44.310 --> 00:47:45.810
that from their point of view,
1261
00:47:45.810 --> 00:47:47.280
there's not all these different things.
1262
00:47:47.280 --> 00:47:50.550
It's like, I'm one child, one family, one person,
1263
00:47:50.550 --> 00:47:52.890
and can't you guys get your act together?
1264
00:47:52.890 --> 00:47:53.723
Basically, right?
1265
00:47:53.723 --> 00:47:54.780
What a lot of families are thinking.
1266
00:47:54.780 --> 00:47:57.840
And so that's part of what we're hoping to work on as well.
1267
00:47:57.840 --> 00:48:00.060
How do we make the family's journey
1268
00:48:00.060 --> 00:48:01.503
more rational somehow, right?
1269
00:48:01.503 --> 00:48:03.870
It'd be great if you qualified once for everything
1270
00:48:03.870 --> 00:48:06.150
rather than 13 different times.
1271
00:48:06.150 --> 00:48:07.290
There are, in the federal government,
1272
00:48:07.290 --> 00:48:10.023
I think, 41 different definitions of disability.
1273
00:48:11.190 --> 00:48:12.420
That's crazy.
1274
00:48:12.420 --> 00:48:14.670
Not easy to fix, but that's part of our plan.
1275
00:48:15.810 --> 00:48:18.150
I think the second thing that you talked about was
1276
00:48:18.150 --> 00:48:20.550
the special health care needs versus life course.
1277
00:48:20.550 --> 00:48:22.980
And this is something that we struggle with
1278
00:48:22.980 --> 00:48:26.700
because there is always this idea, well, what's my lane?
1279
00:48:26.700 --> 00:48:28.350
What's my area of expertise?
1280
00:48:28.350 --> 00:48:30.750
And when am I getting into someone else's lane
1281
00:48:30.750 --> 00:48:32.010
and their thing?
1282
00:48:32.010 --> 00:48:33.273
So in theory,
1283
00:48:34.740 --> 00:48:37.590
we, in my division, are focused on kids
1284
00:48:37.590 --> 00:48:40.950
who need more health care, defined broadly.
1285
00:48:40.950 --> 00:48:45.060
So whether it's education, therapies, doctor stuff,
1286
00:48:45.060 --> 00:48:46.410
surgeries, whatever it is,
1287
00:48:46.410 --> 00:48:47.550
that's sort of our lane.
1288
00:48:47.550 --> 00:48:50.130
This doesn't mean that we don't think about life course,
1289
00:48:50.130 --> 00:48:52.500
social comments of health, health-related social needs.
1290
00:48:52.500 --> 00:48:53.850
Absolutely.
1291
00:48:53.850 --> 00:48:56.070
And then the question is, well, how do we connect those?
1292
00:48:56.070 --> 00:48:59.807
So I think, in the previous group, a woman asked,
1293
00:48:59.807 --> 00:49:02.130
it was really a passionate question,
1294
00:49:02.130 --> 00:49:03.420
and actually two versions of it.
1295
00:49:03.420 --> 00:49:05.430
One was a middle school teacher of the deaf
1296
00:49:05.430 --> 00:49:07.520
and another was, I think, an audiologist
1297
00:49:07.520 --> 00:49:08.910
or speech language pathologist.
1298
00:49:08.910 --> 00:49:11.583
And they said, "Brosco, what, are you nuts?
1299
00:49:13.050 --> 00:49:14.250
Every child who comes to me
1300
00:49:14.250 --> 00:49:17.430
brings this ocean of background in need
1301
00:49:17.430 --> 00:49:19.440
and how am I supposed to do anything?
1302
00:49:19.440 --> 00:49:20.427
I'm one person."
1303
00:49:21.390 --> 00:49:22.223
Right?
1304
00:49:23.520 --> 00:49:25.770
And we talked about, well, some people actually,
1305
00:49:25.770 --> 00:49:27.570
you know, decide, "I'm gonna change careers.
1306
00:49:27.570 --> 00:49:29.730
I'm gonna do something directly with those things."
1307
00:49:29.730 --> 00:49:31.260
But I'm gonna say, "No, I'm trained in this thing.
1308
00:49:31.260 --> 00:49:32.093
This is what I'm good at.
1309
00:49:32.093 --> 00:49:32.926
I'm a good teacher.
1310
00:49:32.926 --> 00:49:34.200
I'm a good audiologist."
1311
00:49:34.200 --> 00:49:36.300
And so how do you find the right partners
1312
00:49:36.300 --> 00:49:37.980
and how do you find the right connections,
1313
00:49:37.980 --> 00:49:40.080
so that you're dealing with all those other issues?
1314
00:49:40.080 --> 00:49:42.600
And just one simple thing.
1315
00:49:42.600 --> 00:49:45.630
As we know that poverty is the single biggest issue
1316
00:49:45.630 --> 00:49:47.340
in the United States, right?
1317
00:49:47.340 --> 00:49:49.733
It's extraordinary how many kids grow up in poverty.
1318
00:49:50.610 --> 00:49:52.140
But there are solutions.
1319
00:49:52.140 --> 00:49:55.020
So if you haven't heard of the earned income tax credit
1320
00:49:55.020 --> 00:49:56.580
or the child tax credit,
1321
00:49:56.580 --> 00:49:58.810
these are ways that families get cash
1322
00:50:00.210 --> 00:50:02.430
in a way that promotes work.
1323
00:50:02.430 --> 00:50:05.880
And the research shows it has huge health improvements.
1324
00:50:05.880 --> 00:50:07.710
And the sad part
1325
00:50:07.710 --> 00:50:09.780
is that most families who are eligible for it
1326
00:50:09.780 --> 00:50:12.030
don't even apply and don't even know.
1327
00:50:12.030 --> 00:50:13.950
So you can still be an audiologist,
1328
00:50:13.950 --> 00:50:15.570
speech language therapist, teacher,
1329
00:50:15.570 --> 00:50:17.910
but maybe at tax season.
1330
00:50:17.910 --> 00:50:19.980
There are local volunteer groups everywhere in the country,
1331
00:50:19.980 --> 00:50:20.813
I promise you.
1332
00:50:20.813 --> 00:50:21.990
And their volunteers might be sitting
1333
00:50:21.990 --> 00:50:23.760
and you have a little space and a little table
1334
00:50:23.760 --> 00:50:26.700
and you say, "Hey, you go make sure you talk to my friends."
1335
00:50:26.700 --> 00:50:28.200
So you don't have to change what you're doing,
1336
00:50:28.200 --> 00:50:31.110
but you're gonna address important social needs.
1337
00:50:31.110 --> 00:50:33.750
So I agree entirely, we should be about life course.
1338
00:50:33.750 --> 00:50:35.070
And when we thought of
1339
00:50:35.070 --> 00:50:36.600
Children and Youth with Special Health Care Needs,
1340
00:50:36.600 --> 00:50:37.433
specific health care needs,
1341
00:50:37.433 --> 00:50:40.620
or maybe it's Social Health and Community Needs.
1342
00:50:40.620 --> 00:50:42.120
Might be another way to do it.
1343
00:50:42.120 --> 00:50:44.220
But then we are getting too far out of our lane,
1344
00:50:44.220 --> 00:50:46.173
which is the healthcare system.
1345
00:50:47.910 --> 00:50:49.037
And then lastly, you asked what did we talk
1346
00:50:49.037 --> 00:50:51.480
to the education folks about in particular.
1347
00:50:51.480 --> 00:50:53.910
And this was kind of what I did just now,
1348
00:50:53.910 --> 00:50:55.620
which is, "We need to do this together.
1349
00:50:55.620 --> 00:50:57.390
This is gonna be so great, right?"
1350
00:50:57.390 --> 00:50:59.310
And they say, "Yes."
1351
00:50:59.310 --> 00:51:02.400
So now we have to figure out some of those details.
1352
00:51:02.400 --> 00:51:03.658
But we agree entirely
1353
00:51:03.658 --> 00:51:05.400
that's where a lot of the action's coming.
1354
00:51:05.400 --> 00:51:06.233
Great.
1355
00:51:06.233 --> 00:51:08.010
PS, we really appreciate your value
1356
00:51:08.010 --> 00:51:09.930
on parent-to-parent support and funding that.
1357
00:51:09.930 --> 00:51:11.130
Thank you.
1358
00:51:11.130 --> 00:51:11.963
Thanks.
1359
00:51:14.940 --> 00:51:18.047
I really appreciate Janet's question
1360
00:51:18.047 --> 00:51:19.680
'cause I think when you're talking about
1361
00:51:19.680 --> 00:51:21.987
deaf and hard of hearing children and their families,
1362
00:51:21.987 --> 00:51:26.987
the whole crux is, to me, the medical and the cultural model
1363
00:51:28.020 --> 00:51:30.363
and how can you get them to co-exist.
1364
00:51:31.530 --> 00:51:32.490
Last week I was at the
1365
00:51:32.490 --> 00:51:34.560
Illinois Teachers of the Deaf Conference,
1366
00:51:34.560 --> 00:51:36.747
and we had an early intervention day.
1367
00:51:36.747 --> 00:51:40.680
And a mother who was here spoke pointedly about,
1368
00:51:40.680 --> 00:51:45.150
she went to the hospital and identified the hearing loss,
1369
00:51:45.150 --> 00:51:48.270
decided the path to the cochlear implant.
1370
00:51:48.270 --> 00:51:50.677
And then the message was,
1371
00:51:50.677 --> 00:51:53.400
"We're waiting on the cochlear implant."
1372
00:51:53.400 --> 00:51:54.720
And in the meanwhile...
1373
00:51:54.720 --> 00:51:56.700
That was the mom's takeaway.
1374
00:51:56.700 --> 00:51:59.400
Correct me if I misspeak, (chuckles)
1375
00:51:59.400 --> 00:52:03.060
but it was like, I was just struck by that
1376
00:52:03.060 --> 00:52:05.310
'cause I'm like, "Wait a minute.
1377
00:52:05.310 --> 00:52:07.183
You got a child that got flesh and blood,
1378
00:52:07.183 --> 00:52:08.487
you got a brain there."
1379
00:52:08.487 --> 00:52:11.430
You know, so we have a step,
1380
00:52:11.430 --> 00:52:14.640
a path forward to cochlear implant,
1381
00:52:14.640 --> 00:52:18.240
but what about communicating, connecting with your child?
1382
00:52:18.240 --> 00:52:21.960
So, you know, that's one thing I'm grateful to EHDI for
1383
00:52:21.960 --> 00:52:24.990
is that we can have these discussions and it's like,
1384
00:52:24.990 --> 00:52:27.600
how can we get the best of everything?
1385
00:52:27.600 --> 00:52:28.646
Because we all know as one,
1386
00:52:28.646 --> 00:52:29.767
we're not supposed to leave a child
1387
00:52:29.767 --> 00:52:31.653
without a single language.
1388
00:52:33.120 --> 00:52:34.080
Agree entirely.
1389
00:52:34.080 --> 00:52:37.230
And I think that we can all agree
1390
00:52:37.230 --> 00:52:40.803
that there is an imperfect healthcare system, right?
1391
00:52:42.464 --> 00:52:44.340
Any of you ever get offered antibiotics by a doctor
1392
00:52:44.340 --> 00:52:45.840
when all you had was a virus?
1393
00:52:45.840 --> 00:52:46.890
This happens all the time.
1394
00:52:46.890 --> 00:52:48.510
It drives us crazy,
1395
00:52:48.510 --> 00:52:50.730
those of us who try to have evidence-based practices.
1396
00:52:50.730 --> 00:52:52.470
Our job, our hope in EHDI
1397
00:52:52.470 --> 00:52:55.830
is that the best information possible,
1398
00:52:55.830 --> 00:52:57.690
that's evidence based, that's clear,
1399
00:52:57.690 --> 00:52:59.669
that promotes shared decision-making,
1400
00:52:59.669 --> 00:53:00.750
that's our goal.
1401
00:53:00.750 --> 00:53:02.040
That's what we're all trying to work on.
1402
00:53:02.040 --> 00:53:04.350
And unfortunately, there are way too many examples
1403
00:53:04.350 --> 00:53:05.520
that you just described.
1404
00:53:05.520 --> 00:53:07.733
And it's our job to keep trying and fix that.
1405
00:53:09.221 --> 00:53:11.830
The medical model sits deep in our culture
1406
00:53:13.410 --> 00:53:15.570
and it's hard to get people to think differently.
1407
00:53:15.570 --> 00:53:17.811
And I say that as someone who's done education
1408
00:53:17.811 --> 00:53:20.202
around disability culture
1409
00:53:20.202 --> 00:53:23.727
from medical students and residents for 25 years now.
1410
00:53:23.727 --> 00:53:27.120
It's just it's deeply embedded in broader culture.
1411
00:53:27.120 --> 00:53:28.860
It's hard work to change.
1412
00:53:28.860 --> 00:53:31.967
It's our job to do that, and we'll keep doing it.
1413
00:53:33.606 --> 00:53:34.481
Hi, Dr. Brosco.
1414
00:53:34.481 --> 00:53:35.314
My name's Polly.
Jeff.
1415
00:53:35.314 --> 00:53:37.070
Don't call me Dr. Brosco. I don't want that.
1416
00:53:37.070 --> 00:53:39.413
(audience laughing)
Too late.
1417
00:53:39.413 --> 00:53:40.246
I'm Polly Earl.
1418
00:53:40.246 --> 00:53:43.230
I'm a teacher of the deaf and I'm the president
1419
00:53:43.230 --> 00:53:45.720
of the Cued Speech Association of New England.
1420
00:53:45.720 --> 00:53:47.858
Are you familiar with cued speech?
1421
00:53:47.858 --> 00:53:49.229
Is this cued speech?
1422
00:53:49.229 --> 00:53:51.630
This is cued speech, yes.
1423
00:53:51.630 --> 00:53:54.173
She's cueing the sounds of English right now.
1424
00:53:54.173 --> 00:53:56.970
And I'm also the director of outreach
1425
00:53:56.970 --> 00:53:59.520
for the National Cued Speech Association.
1426
00:53:59.520 --> 00:54:01.530
So I just wanted to follow up
1427
00:54:01.530 --> 00:54:02.970
on what that gentleman was talking about.
1428
00:54:02.970 --> 00:54:04.950
What do you do when your baby is born
1429
00:54:04.950 --> 00:54:07.320
and you go into the audiologist
1430
00:54:07.320 --> 00:54:09.900
and they say, "Okay, you know, these are the options."
1431
00:54:09.900 --> 00:54:11.670
We're finding that the options
1432
00:54:11.670 --> 00:54:16.053
are usually given as sign language or spoken English.
1433
00:54:17.580 --> 00:54:22.320
Cued speech is rarely described or offered by audiologists
1434
00:54:22.320 --> 00:54:24.510
and also other professionals.
1435
00:54:24.510 --> 00:54:26.747
And we're wondering, you know,
1436
00:54:26.747 --> 00:54:29.820
how we can help you and other pediatricians
1437
00:54:29.820 --> 00:54:33.480
get that cued speech mentioned information about it.
1438
00:54:33.480 --> 00:54:36.840
And so those cued kids grow up
1439
00:54:36.840 --> 00:54:39.780
from the time their parents start cueing to them,
1440
00:54:39.780 --> 00:54:42.300
they have full access to the language of the home,
1441
00:54:42.300 --> 00:54:45.840
whether it's English, Spanish, Urdu, Somali, whatever.
1442
00:54:45.840 --> 00:54:49.020
You can cue in all the languages pretty much in the world.
1443
00:54:49.020 --> 00:54:50.970
And that way they have full access
1444
00:54:50.970 --> 00:54:52.980
to their curriculum at school
1445
00:54:52.980 --> 00:54:55.230
and the languages being spoken at home,
1446
00:54:55.230 --> 00:54:57.773
and they can read and write at grade or above level.
1447
00:54:59.790 --> 00:55:01.110
Thank you.
1448
00:55:01.110 --> 00:55:02.100
And as I said coming in,
1449
00:55:02.100 --> 00:55:05.220
I am not an expert in deaf or hard of hearing
1450
00:55:05.220 --> 00:55:08.010
and I'm eager to learn from all of you.
1451
00:55:08.010 --> 00:55:11.730
I think that our job, as I mentioned before,
1452
00:55:11.730 --> 00:55:13.120
was to follow the legislation, right,
1453
00:55:13.120 --> 00:55:15.390
which says that we need to make sure
1454
00:55:15.390 --> 00:55:17.190
that children have access to language.
1455
00:55:17.190 --> 00:55:19.530
And there are definitely disagreements in the community
1456
00:55:19.530 --> 00:55:20.760
about the best ways to do that.
1457
00:55:20.760 --> 00:55:24.330
Families are making a shared decision-making approach,
1458
00:55:24.330 --> 00:55:26.250
and our job is to try to get their best information
1459
00:55:26.250 --> 00:55:27.083
to families.
1460
00:55:27.083 --> 00:55:29.790
If you agree that you have specific things that you can do,
1461
00:55:29.790 --> 00:55:32.044
we're open to listen and learn.
1462
00:55:32.044 --> 00:55:33.300
So thank you.
1463
00:55:33.300 --> 00:55:34.950
So we have time for this question
1464
00:55:34.950 --> 00:55:36.033
and one more.
1465
00:55:37.830 --> 00:55:39.300
Okay, this is gonna kind of follow up
1466
00:55:39.300 --> 00:55:44.300
on Janet's life course and the idea of shooting high.
1467
00:55:46.770 --> 00:55:51.770
State or nationally, we have I/DD waiver programs
1468
00:55:51.810 --> 00:55:56.810
that address the pervasiveness of that exceptionality.
1469
00:55:56.880 --> 00:56:01.560
I just wonder why we don't have that for hearing health.
1470
00:56:01.560 --> 00:56:06.560
Because when you're looking at I/DD, you could get PT, OT.
1471
00:56:07.260 --> 00:56:11.010
It directs all the necessary supports.
1472
00:56:11.010 --> 00:56:15.960
It includes other outside activities, et cetera.
1473
00:56:15.960 --> 00:56:17.610
And when you're looking at an individual
1474
00:56:17.610 --> 00:56:19.500
who may need interpreting services
1475
00:56:19.500 --> 00:56:24.180
for to engage in the community and speech and language
1476
00:56:24.180 --> 00:56:25.740
or listening to spoken language,
1477
00:56:25.740 --> 00:56:28.980
and they kind of have that same, it affects everything.
1478
00:56:28.980 --> 00:56:31.293
So I just would like to see that.
1479
00:56:32.250 --> 00:56:33.083
Thank you.
1480
00:56:33.083 --> 00:56:34.600
And this connects to something
1481
00:56:34.600 --> 00:56:36.480
that came up in the earlier section, which is,
1482
00:56:36.480 --> 00:56:40.890
should part of our TA be, how does legislation work?
1483
00:56:40.890 --> 00:56:42.480
How does legislation change?
1484
00:56:42.480 --> 00:56:43.410
Are there ways that we can help?
1485
00:56:43.410 --> 00:56:46.470
So when the particular idea you had
1486
00:56:46.470 --> 00:56:48.520
might make sense to do it at state level.
1487
00:56:49.800 --> 00:56:52.680
Anyone here think that the US healthcare policy system
1488
00:56:52.680 --> 00:56:53.513
makes sense?
1489
00:56:53.513 --> 00:56:54.521
(audience laughing)
1490
00:56:54.521 --> 00:56:56.550
That it's somehow rational?
1491
00:56:56.550 --> 00:56:57.383
No.
1492
00:56:57.383 --> 00:56:59.130
And it's because, what's happened is,
1493
00:56:59.130 --> 00:57:01.080
over the last really hundred years,
1494
00:57:01.080 --> 00:57:05.010
every legislative group adds sort of another layer
1495
00:57:05.010 --> 00:57:10.010
and the laws make sense at the time, more or less.
1496
00:57:10.500 --> 00:57:11.670
And then they get added on.
1497
00:57:11.670 --> 00:57:14.700
So that's why the system is as crazy as it is, in some ways.
1498
00:57:14.700 --> 00:57:16.027
No one's standing back and saying,
1499
00:57:16.027 --> 00:57:17.490
"How do we fix it together?"
1500
00:57:17.490 --> 00:57:19.920
And just one quick example in Florida,
1501
00:57:19.920 --> 00:57:23.430
to qualify for the home community-based waiver,
1502
00:57:23.430 --> 00:57:24.780
your diagnosis have to be,
1503
00:57:24.780 --> 00:57:26.760
and I don't have them all, there's six of them,
1504
00:57:26.760 --> 00:57:29.580
so intellectual disability,
1505
00:57:29.580 --> 00:57:33.434
cerebral palsy, epilepsy, Down syndrome,
1506
00:57:33.434 --> 00:57:34.646
or Prader-Willi.
1507
00:57:34.646 --> 00:57:37.860
Prader-Willi is like one in 17,000.
1508
00:57:37.860 --> 00:57:40.740
So why is Prader-Willi on the list with these other things?
1509
00:57:40.740 --> 00:57:43.830
Well, it was one of those accidental legislative things
1510
00:57:43.830 --> 00:57:45.840
where probably one of the legislators,
1511
00:57:45.840 --> 00:57:47.580
this was particularly important to him or her,
1512
00:57:47.580 --> 00:57:50.190
and so it got engaged in the language.
1513
00:57:50.190 --> 00:57:51.990
Legislation gets built this way.
1514
00:57:51.990 --> 00:57:54.190
And I think I'm losing track of what was said.
1515
00:57:54.190 --> 00:57:56.100
This was in the previous talk, not this one right now.
1516
00:57:56.100 --> 00:57:58.860
It is wonderful that we live in a democracy
1517
00:57:58.860 --> 00:58:00.390
where that idea,
1518
00:58:00.390 --> 00:58:01.838
I don't know where she went, there she is,
1519
00:58:01.838 --> 00:58:03.420
could be brought to a legislator
1520
00:58:03.420 --> 00:58:06.120
to say, "Why don't we include this kind of thing?"
1521
00:58:06.120 --> 00:58:10.980
But also say that there is real value in working together.
1522
00:58:10.980 --> 00:58:13.470
And one of the things that I see sometimes
1523
00:58:13.470 --> 00:58:14.850
from a policy point of view
1524
00:58:14.850 --> 00:58:16.597
is that the autism community will come and say,
1525
00:58:16.597 --> 00:58:18.180
"We need to do this for autism."
1526
00:58:18.180 --> 00:58:19.627
And the sickle cell community come,
1527
00:58:19.627 --> 00:58:21.420
"We need to do this for sickle cell."
1528
00:58:21.420 --> 00:58:26.107
And if there were the opportunity to work together and say,
1529
00:58:26.107 --> 00:58:29.070
"This is the way a waiver can work for all children
1530
00:58:29.070 --> 00:58:31.110
with a range of different concerns-
1531
00:58:31.110 --> 00:58:32.777
I'm glad to hear you.
1532
00:58:32.777 --> 00:58:33.626
(audience applauding)
1533
00:58:33.626 --> 00:58:34.459
Thank you.
1534
00:58:34.459 --> 00:58:36.240
This would be a wonderful thing, right?
1535
00:58:36.240 --> 00:58:40.050
And that it's not a zero sum game at all.
1536
00:58:40.050 --> 00:58:42.660
There is enough resources in the United States.
1537
00:58:42.660 --> 00:58:44.070
We are the richest nation on earth.
1538
00:58:44.070 --> 00:58:45.543
We can do this.
1539
00:58:48.720 --> 00:58:50.866
One last question.
One last question.
1540
00:58:50.866 --> 00:58:52.829
Make sure it's an easy one.
1541
00:58:52.829 --> 00:58:53.877
I'll try. (chuckles)
1542
00:58:53.877 --> 00:58:55.125
Hi, my name is Michelle Marciniak.
1543
00:58:55.125 --> 00:58:58.650
I'm a mom of a 12-year-old who's hard of hearing,
1544
00:58:58.650 --> 00:59:02.070
and I started something called Let California Kids Hear.
1545
00:59:02.070 --> 00:59:04.020
Been doing this for about five years now.
1546
00:59:04.020 --> 00:59:08.490
And we tried to mandate health plans cover hearing aids,
1547
00:59:08.490 --> 00:59:09.810
pediatric hearing aids,
1548
00:59:09.810 --> 00:59:11.535
in the state of California,
1549
00:59:11.535 --> 00:59:16.535
and we were unsuccessful because of age discrimination.
1550
00:59:18.990 --> 00:59:20.550
So anyhow, I had two questions,
1551
00:59:20.550 --> 00:59:24.480
but during this journey I've learned two things.
1552
00:59:24.480 --> 00:59:27.540
One, the cost, right, of hearing aids
1553
00:59:27.540 --> 00:59:30.540
is a significant barrier in meeting 1, 2, 3.
1554
00:59:30.540 --> 00:59:32.670
It's been exciting to see a lot of legislation
1555
00:59:32.670 --> 00:59:34.890
at the federal level for adults.
1556
00:59:34.890 --> 00:59:37.140
And I think there's a story to be told at the federal level
1557
00:59:37.140 --> 00:59:41.610
for children and access to affordable hearing aids.
1558
00:59:41.610 --> 00:59:44.040
You mentioned that there's money in Medicaid.
1559
00:59:44.040 --> 00:59:47.400
And one of the things I learned going through this process
1560
00:59:47.400 --> 00:59:50.070
was, in the state of California,
1561
00:59:50.070 --> 00:59:53.820
CAA did a study and there's a 60% reduction
1562
00:59:53.820 --> 00:59:58.203
in pediatric audiologists taking Medi-Cal CCS.
1563
00:59:59.272 --> 01:00:00.720
And when we surveyed them,
1564
01:00:00.720 --> 01:00:05.370
it was because rates hadn't been increased in 20-plus years.
1565
01:00:05.370 --> 01:00:07.350
So access is a huge issue.
1566
01:00:07.350 --> 01:00:08.880
We've been talking to a lot of providers
1567
01:00:08.880 --> 01:00:11.010
in the Central Valley at six months.
1568
01:00:11.010 --> 01:00:13.440
So I think these are two of the barriers,
1569
01:00:13.440 --> 01:00:15.270
at least in California, that we're facing,
1570
01:00:15.270 --> 01:00:16.740
is the cost of hearing aids
1571
01:00:16.740 --> 01:00:20.580
and access to a pediatric audiologist
1572
01:00:20.580 --> 01:00:24.240
to be able to meet these 1-3-6 guidelines.
1573
01:00:24.240 --> 01:00:25.784
So thank you.
1574
01:00:25.784 --> 01:00:26.693
Thank you.
1575
01:00:26.693 --> 01:00:28.530
Now the good news about Medicaid
1576
01:00:28.530 --> 01:00:30.630
is that it covers a lot of different stuff.
1577
01:00:30.630 --> 01:00:32.997
The bad news about Medicaid is they pay such low rates
1578
01:00:32.997 --> 01:00:35.347
and it's hard to get folks to actually take it.
1579
01:00:36.720 --> 01:00:38.160
It's an advocacy issue.
1580
01:00:38.160 --> 01:00:40.930
A lot of that money in Medicaid
1581
01:00:41.910 --> 01:00:44.130
could probably be better spent in certain ways.
1582
01:00:44.130 --> 01:00:46.650
And so the kind of advocacy you're doing makes a difference.
1583
01:00:46.650 --> 01:00:47.820
From the policy point of view,
1584
01:00:47.820 --> 01:00:49.470
we're always trying to think about what are the best ways
1585
01:00:49.470 --> 01:00:51.540
to invest in those dollars.
1586
01:00:51.540 --> 01:00:52.740
But we also need advocates,
1587
01:00:52.740 --> 01:00:55.380
because only advocates can come to a legislature
1588
01:00:55.380 --> 01:00:58.710
and say, "Hey, you know, Medicaid rates are so low
1589
01:00:58.710 --> 01:00:59.910
and no one wants to do this work.
1590
01:00:59.910 --> 01:01:01.110
You need to bump them up
1591
01:01:01.110 --> 01:01:03.120
so that people want to do this work."
1592
01:01:03.120 --> 01:01:05.010
And there are legal means that you can do that too,
1593
01:01:05.010 --> 01:01:07.863
but that's really from from outside of policy.
1594
01:01:09.660 --> 01:01:10.940
Okay, thank you very much.
1595
01:01:10.940 --> 01:01:13.379
Do you feel like you've been drinking from a fire hose?
1596
01:01:13.379 --> 01:01:14.212
(audience laughing)
1597
01:01:14.212 --> 01:01:15.870
(chuckles) I do.
1598
01:01:15.870 --> 01:01:17.880
So lots of great ideas.
1599
01:01:17.880 --> 01:01:20.850
I'm reminded of Lily Tomlin from "Laugh-In"
1600
01:01:20.850 --> 01:01:24.337
about 30 years ago who once said,
1601
01:01:24.337 --> 01:01:27.090
"Someone ought to do something about that."
1602
01:01:27.090 --> 01:01:29.900
And then she said, "And then I realized I was someone."
1603
01:01:29.900 --> 01:01:30.733
(audience laughing)
1604
01:01:30.733 --> 01:01:33.420
And so I hope you'll all have some great ideas.
1605
01:01:33.420 --> 01:01:35.040
Give me one more round of applause
1606
01:01:35.040 --> 01:01:36.929
for a great presentation right here.
1607
01:01:36.929 --> 01:01:39.933
(audience applauding)
Thank you.