ROUGH EDITED COPY

EHDI
Malpensa ‑ 4:15 pm CST Breakout Session
March 5, 2019

CART CAPTIONING PROVIDED BY: 
ALTERNATIVE COMMUNICATION SERVICES, LLC
www.captionfamily.com  

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This text, document, or file is based on live transcription.  Communication Access Realtime Translation (CART), captioning, and/or live transcription are provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.  This text, document, or file is not to be distributed or used in any way that may violate copyright law. 

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   >> We have one more minute. Maybe in the next minute, 20 people will filter in. Ha ha! I was waiting for the clock to turn over. So, thank you. Good afternoon. Thank you for sticking it out to the very end and missing happy hour. Happy hour will still be going on in 25 minutes. So, I'm Dylan Chan, and I have been working with Joy for five years now, which has been a really wonderful collaboration. It's one of the things that I really love about being able to work with Joy and others who are not in the very narrow field of ENT that I work in. 
    So we wanted to come and share our experience with how to advocate for teletherapy with the program within California state public insurance that covers special health care conditions. And how we went through that journey and where we are right now and some of the successes and challenges that we've had. So, one of the things that I'm interested in is disparities in hearing health care. At the center of all of this is health care access. Right? If you don't have access to health care, it's hard for you to make use of the resources to achieve the outcomes that you are ‑‑ that you are looking at. And one of the major contributors to health care access differences are demographic disparities. So, as we know, hearing loss is a low incidence condition. Right? In the grand scheme of things, it doesn't happen all that often. In red are the counties with one or fewer DHHS children. When you look at this care, it is very unevenly distributed, right? So this is a map showing the distribution specifically of counties that have an accredited auditory verbal therapy. This is just one example of a specific specialization of a hearing health care provider.  If you were to look at a similar map of Spanish‑speaking oral habilitation providers or ASL speaking pediatric audiologists or an ENT who takes public insurance, you would have a very similar map to this. And so, having this extreme mismatch between where the rare need is and where the actual experienced providers are is really at the crux of logistical problems in health care access. And this is one of the major ways in if which demographic disparities contribute to inequities and health care access. To teletherapy has been used to connect people across geographies. So you can go from a map that looks like the one on the left, which is the actual physical distribution of auditory verbal therapists to the map on the right which is the counties that are actually that can be served by those therapists through teletherapy. So, you can cover a lot more ground with teletherapy. The problem is that teletherapy programs are ‑‑ it's very difficult to achieve sustainability. And so Joy will talk about her experience and journey with her program towards that, and then how we came together to work with CCS to create a sustainable model for teletherapy provision and coverage in California. 
   >> JOY KEARNS: So baby talk is our teletherapy program, and it's a collaborative between Weingarten children's center and Stanford. We started in 2012, and it was a test case to see how telemedicine can make patient's lives easier and bring resources to underserved and remote communities. The PIs assumed that if we could prove this, then we would be able to get part C programs to pay for it and/or with our affiliation with Stanford, that we would be able to pay for the programs through insurance. It's been a much rockier road than we expected it would be. 
    So why BabyTalk? In California, 6% of kids are getting specialized services. They are either getting services through one of the CSD schools, so where they're getting specialized ASL services or they're in an in‑option school. And the rest of the children are getting services through partnership programs which vary widely. I have a new little guy on my case load who is actually getting his services through regional center because he has other issues. So, he is not being seen by a teacher of the deaf or a speech language pathologist but an infant development specialist who knows nothing about developing language in a child with hearing loss. So, that's concerning for us. I can speak best to the listening and spoken language provision of services, because that's my area of expertise. 21% of the counties in California have a LSL provider. California, there's a lot of frontier land. It's hard to believe, because you think of us as a very metropolitan state, yet there's a lot of area where there's not much. So, even within those counties, that can be quite a tremendous drive to that provider. And 61% of their LSL providers are in Los Angeles county, so they're concentrated in one area. 
    We are birth to 3, and sometimes we follow a little past 3 to make sure they get through the transition well. All of the kiddos have known hearing loss and are using appropriate amplification to give them adequate access to develop LSL. We've offered consultative services as well. When we started, the iPad was the only option that was encrypted and HIPAA compliant. Now there are a lot more options. Something that sets BabyTalk apart from other early intervention programs is that we're serving mostly vulnerable and at risk families. So many of our families are low SES, low maternal education level. 25% of the mothers have less than a high school education. We have a lot of families that have language and cultural barriers. About half are monolingual Spanish speakers, and complex medical diagnosis, significant behavioral issues, lack of social supports, and many reside in the rural frontier regions of California. 
    Our program emphasizes collaboration. We are not instead of; we are in addition to. The children we serve are receiving both medical as well as educational early intervention services through their part C provider. We don't want to be instead of. We want to be a bonus add‑on, kind of the special sauce if the family wants the focus. Maybe the early start provider is providing more comprehensive services. 
    So, this is more specific to our program in particular. We serve 205 clients. Right now 70% of our population is high‑risk vulnerable. At its peak it was about 95%. This shows where the option schools are. This shows where the LSLs providers are. I'm sorry it's hard to see, but it shows all of the different counties that we've served. In contrast to the statewide statistics, we've actually served a large number of the counties in California. 
    Each state has their own policy on teletherapy. We were approached by a center in Florida a couple of years ago, so I don't know if their policy has changed. But at the time, their state, even private insurance was not paying for teleintervention and part C services were not either. So, you need to know what the policy is in your state specifically. What has been interesting for us is there was an assumption because our private insurance pays for it in if California that public insurance would have reciprocity and follow the same guidelines, and that was not the case. So, for our program, the question has been, do part C services pay for this? In the past six years, that number jumped to four. I just got my fourth child funded through his county. But that's all. We have not had great success with that. California is a local controlled state, meaning that funds go to the SELPA. So, we could not advocate at CDE for this. So, that's been a real challenge for us. 
    AB415 was the telehealth advancement act. So, in California, private insurance does pay for telespeech therapy. Basically as long as you are rendering the same service that you would provide in the clinic, it's acceptable. That is why we use the parent coaching model at birth to 3. We can do identical services what we can do in the clinic. As you get into the school‑aged populations or the preschoolers, it's a little bit harder. For the birth to 3, using telepractice for parent coaching, a lot of the literature is showing that it can sometimes be more effective. My parent coaching skills have improved tremendously because the parent is really the one driving that language bus. And I am coaching them, and they are the one working with their child, which is really effective. 
    How did we get in the door? When I discovered that MediCal and CCS did not cover telespeech therapy, I thought I would call them up and have a meeting. It's not that easy to navigate. So, I think the secret to our success was a couple of things. The stars aligned. Timing is everything. Department of health care services was really interested at the time that we approached them. And they have been doing a lot of research. And really looking into secondly, I think it was all about our low hanging fruit. So, Dr. Chan was number one on that list. What did they want to know? Well, the first thing they wanted to know is that on their list of approved telehealth services at the time, a nurse had to be in the room. And so they wanted to understand why this was different. And so, the most helpful thing was to bring in videos such as the one I'm about to show you for them to see that these are healthy kiddos who just needed to have a service in the home, because why would we want them to drive six hours for this service when they could easily have it on an iPad? 
    [ Captioned video ] 
    So, between the videos and the other thing that really made our argument was our data. I think it was extremely valuable that our data came from Stanford. They looked upon that quite favorably, so we were able to show them that these kiddos were making gains. In our most vulnerable kiddos, we had to show that they were making gains according to their peers. I think that makes sense. So, our key questions that we addressed with them are there. First and foremost, the home‑based intervention's equivalent for DHH children. We know that it is. And we know that actually the parents really do have to do the work with their kiddo. I have heard some home visitors say that sometimes the parents will go do laundry while they're doing a home visit. And you can't do that when you're participating in a teleintervention session. We emphasize the fact that we were following best practices. It is home based and it's going to be in the natural environment. And we also emphasize that American academy of pediatrics endorses this, that the provision of services in the child's natural environment. So, we had a lot of nice support there. 
   >> DYLAN CHAN: So every state has an AAP chapter champion. And one of the most important things was getting in the door and getting ‑‑ going into a room with a bunch of MDs who are dictating policy but don't know anything about this. It's like me walking into a room full of non‑MDs and trying to talk to you. But I am comfortable being here, because I'm here with Joy. It's a similar situation. All of you do have a chapter champion that you can go to for this kind of work. One of the things that they really wanted was data. Right? And ironically, all of the data that that I presented, that we present at this meeting I didn't actually acquire or analyze any of it. But somehow coming from me, it spoke to them more than if it were just coming from Joy. 
    And what they really wanted to know is were the outcomes with speech teletherapy equivalent to those that are achieved with in‑person therapy? And as happened, right around that time, there was this paper that came out which is a significant paper. It was a quasi‑randomized trial of in‑person versus teletherapy for early intervention services. This was a little bit different because this was an instead of. So, teletherapy instead of in‑person therapy as opposed to the supplemental teletherapy model, which BabyTalk is. But they certainly found that the outcomes were equivalent if not better in the teletherapy group. Now this study didn't happen in California. And California state insurers are interested in what happens in California. And that's where the direct data from the BabyTalk program really came in. So, over those few years, they had been collecting data using PLS and McArthur Bates. And they were able to show significant improvement. 
    So being able to present this data in a very simple way. They just wanted ‑‑ they wanted an easy ‑‑ a way to make an easy answer. So, we wanted to give them easily digestible data. And so that helped, right? The third question especially when policy is involved. It's one thing to show equivalence and show that they should do this, be To really get a little more fire in their belly to actually implement these things, it was helpful for us to talk about how teletherapy can actually address disparities, because equity and equal protection under the law and particularly for a public insurance body is a really powerful motivator. So, we were able to talk about this. There have been several review papers talking about how telemedicine could be used to address disparities. And this was something that we didn't have a whole lot of data at the time to directly show them. But it was something that we said that we would look into more. And when we actually did a deeper dive into the teletherapy data ‑‑ now in order to really look at the disparities, we needed a cohort of families that were not receiving teletherapy. So, what we did is we looked at a cohort of our children from UCSF and Oakland children's hospital and compared those who did not receive teletherapy and those who did. Because we had a diverse patient population, we were able to do subgroup analyses for various groups that experienced disparities. So, shown here are the auditory comprehension scores on the PLS. That clearly increased from pre to post‑teletherapy. If you look at all of the children in the cohort, those who received teletherapy had significantly improved scores. If you subgroup everyone out, only those that did not have English as a primary language at home or only those that had poor access as defined through their chip scores through a cochlear implant evaluation. So, this was the gap in the auditory comprehension scores between those with low and high access in the absence of teletherapy, which was about one and a half standard deviations. In the group that did receive the teletherapy, the access space to outcomes gap was closed. This was work that we have done subsequent to the CCS discussion. But, these slides, all of these slides right here are ones that we actually presented to CCS in order to advocate for this policy change. And so we were able, based on this evidence to demonstrate to them that the ‑‑ there is considerable potential to reduce disparities and help hearing health care outcomes. So, we were able to make this recommendation, which they actually went with. Now that's obviously not the end of the story. The implementation of the policy has not been totally straightforward. 
   >> JOY KEARNS: We're out of time. The situation like this, yes, they have approved it. The reimbursement rate is very poor, and we are also not a MediCal CCS center yet. We are in the process right now. We are also as a small nonprofit needing to look at partnering to be able to do more insurance contracts. So, do you partner with a larger health care center to make that possible or what? It's not totally fixed yet, but it was a huge win for the children in California that this is now a service that can be reimbursed. 
   >> DYLAN CHAN: One of the great things that came out of this is that Joy and I got to talk to each other. Think about how these arguments can be made and make some changes in policy and also lay the ground work for future impact. So, what came out of this collaboration is actually a current grant proposal. We don't know whether we will be funded or not. But looking at this, this came about in discussions with CCS. They are interested in patient‑centered outcomes. They want to know what's best for us and what's best for the patients. We convened a bunch of stakeholders and got their input. And we were able to bring together a bunch of different institutions all of which are shown here to develop a proposal for a randomized trial looking at the effectiveness of supplemental teletherapy. And so hopefully this collaboration will continue into the future. And you know, it's been successful thus far, and we hope this can be a model for extending the findings of our programming to the broader community and hopefully help change policy in other states. So thank you. 
   >> JOY KEARNS: Thank you. 
   [ Applause ]    
   [  End of stenographic realtime captioning  4:47 pm CST ]