Telemedicine Connections Between Community Health Centers and Florida Title V Services: A Model for Serving Uninsured Children with Special Health Care Needs in Underserved Communities

Lynda Honberg: Last speaker is Connie Wells, and she’ll be talking about connections to the family.

Connie Wells: Well, I’m just going to let you run my slides for me. I’m really excited to be here, too. One of the main reasons that I think it’s really important for someone like me to be involved in this is I was a telehealth skeptic. Years ago I wasn’t really sure that this was family centered. I wasn’t really sure that this wouldn’t scare families. I wasn’t really positive that this was the friendly kind of health care that families needed, but I have to say through my work with the project and with the families, I’ve really made a jump over to the other side, and I think I’ve learned so much more about what it can do than what it can’t do. So I’m now sold. Why use a family organization? Why not just hire a parent consultant to work with Lise? One of the biggest reasons that we wanted to do this was because it has to be more than just me. It has to be more than just one person. It has to be a reality check that really represents multiple cultures, multiple populations in multiple people’s needs. And it has to have a statewide application. Even though we’re doing it in a couple communities right now, what if we had the opportunity and the funding to go ahead and go statewide with this? We have to make sure that whatever we do and however we do it has the capacity to represent all of the families that it’s going to serve, and our organization had access to that population leadership throughout the state. We know who the people are. We know who the families are. We know who those organizations are, like Redlands Christian Migrant Association, and how to get them in contact with them. We also have access to families because they call us every day as well as we have increased credibility and exposure in terms of the families that we work with. When we come to a family and we say to them, “We’d like you to work with us,” they have an idea who we are. They’ve seen us at conferences. They’ve talked to us on the telephone, so it was kind of an easy fit. Why use FIFI? Well, we’re a family-to-family health information and education center grantee for Maternal and Child Health Bureau which means we have a toll-free number, and we get around 3,000 contacts every month from families and providers asking questions about how to better navigate the health care system. We also a family-networking grantee through SAMSA, Substance Abuse and Mental Health Services Administration. We work with the mental health population in the state of Florida, too, which is a really unique thing in the state of Florida that FIFI is the umbrella for both Family Voices and the Florida Federation of Families for Children’s Mental Health. We’re family involvement contact tracked with Children’s Medical Services, the Department of Health and through that contract we have a network of established and trained family leaders called family health partners. We have 16 family health partners throughout the state that are parents of children with special health care needs that work in their community with community families in coordination with the CMS offices and the Department of Health. We really look at some of the phone calls that we get and some of the things that families are telling us, and it correlates with everything that Lise has learned and shared with you as well as Phyllis and as well as Jerry. You know, the barriers that we see to insuring children with special health care needs are definitely the geographic area. The diversity that families have to deal with and then the providers have to deal with has made it difficult for families to learn how to navigate that system. Here’s what I think is one of the biggest things: trust. Families from around the state of Florida who are from a different country or have a different culture often have a distrust because of things that they’ve heard that may or may not be true about what’s happening in health care, and that trust level really dictates whether or not they’re going to file an application or not. Filing that application and paper is often very difficult for them, and if they have someone to help them navigate them through that, it really makes a difference. The community variables. These communities are very different as Jerry talked about, and you know when you think about a community that has such a high Hispanic population as Immokalee does and then all of the other variables within it, it makes it critically important that we know how to address all the barriers with each of those families. Okay. What do we know about the families that we’re trying to reach? Families do not always recognize Medicaid and Title V as an insurance. They see it often as a welfare program, and because of their culture and their pride and wherever they came from, they often do not want to turn to that as a resource in order to access the health care needs they need for their child. Families are influenced by other family members and their neighbors. We have families that call us and say that they want to know how to get health care for their child, and they’ll start telling us something the child has CP possibly, cerebral palsy. And we’ll say to the family, “Well have you heard of Children’s Medical Services?” “Well, yeah, I did.” Now this is a true story. “But the janitor at my child’s school said we probably weren’t eligible for that.” Now that janitor was someone they knew and they saw every day as they were taking their kid into school. Furthermore, he had a uniform with his name on it, and that was a reputable source of information for that family. The Brandeis study that Family Voices did showed that two-thirds of all families of children with special health care needs report a significant impact on their ability to work, but families on Medicaid report a lower impact on their finances. That’s why it’s really important to try to sell that Medicaid program to these families for their own economic productivity. Okay. So we wanted to build a support model, and looking at it and listening to the families and the family consultants that we’re working with right now, the outreach worker is the perfect approach. That authority figure from within the community has really made a difference. The face-to-face intakes. It’s increased the family’s comfort and their confidence in what’s going on. They’re not being handed a piece of paper and being told fill this out and bring it into the office. And the evaluations via telemedicine is definitely expanding the comfort zone of families. You know, families are really getting used to all of this sophisticated technology. To be honest with you, when my child with special health care needs gets really, really ill, and we go into the doctor and they want to do a regular old lab test, I’m somewhat disappointed because of all the technology that I’m used to that they can use at other times, I just think that if it’s a real concern, they’re going to use something big on her. So when we start--that’s just the way families think, and so when we come at these families with all this sophisticated technology, it’s telling them this is important, it reinforces their belief that this is going to work, and it really makes ‘em feel important. What do we know about telehealth? Family Voices also did an incredible project about telehealth. Barbara Popper did it, and I really encourage you to go to the Family Voices website and download the information that they have from the families that they talked to. They found that telehealth really does support the concept of community-based care which is part of family centeredness. Families do see it as a faster way to receive services. Families that are busy. Families that have a lot going on in their lives like fast. Families like not having to travel. We have a lot of families in the Immokalee area who do not go to services. I know we’ve had some families that we sent onto St. Petersburg. They got to St. Pete to the hospital and went home. You know why? They had never parked in a parking lot with an arm. They did not know how to get in the parking lot, so they turned around and went home. They didn’t know where else they could park. Families feel that the technology increases their trust, just like I said. And what do we think we’re going to learn? Well, I feel personally we’re going to really learn how families will respond to neighborhood outreach. I mean, this is true grassroots stuff. How communities will react to that kind of support? How are the pediatricians going to react to it in the community? How are the businesspeople in the community going to react? How are the crew leaders--and this is important to us. How are crew leaders, who are often that first line of support for some of these families in guidance, how are they going to react to this new kind of technology and approach? And the impact telehealth has or can have on the diverse cultures. Again, how are they going to view it? Can we increase their confidence in this new kind of technology? And lastly, we really want to maintain the momentum. We want families to continue as advisors. We have a parent who is a parent leader and works with CMS, Children’s Medical Services in Miami. She works with inner-city families who are generally from Hispanic descent, and she has an incredible connection and understanding because she’s one of them, and she gives us a lot of guidance. We also have Elizabeth from Fort Meyers who is an African-American Mom who’s also a state policeman and works with us, and she has an incredible connection to the people in her community. We want to continue building the advisors for this project around the state as we move forward. We want to build a true team that’s not just Connie representing what it is that families need, but when they move into a community that’s predominantly maybe Haitian, that maybe we could find a parent leader to be on the team that represents that community. And make those diversity adjustments. I write things and send it out for Elizabeth and Cindy in Miami to review, and inevitably they send it back both with very different reviews and interpretations of what they saw. And we have to learn how to accommodate those differences in their culture in a way to go down to the community level, and then to have that amount of flexibility that we’ve really gotten from the project and the project director. It has been incredible the way that we’ve had to take a couple steps back in order to accommodate Cindy and Elizabeth’s schedules in order to feel like we were actually digging into the community and getting the kind of representation that we had to have. We felt that that representation was so important to the team that we were willing to give up a few weeks of going forward and go backward a little bit, do what we had to do, and then go forward. Thank you.

Lynda Honberg: Okay. We’ve got some time for questions. I hope you’re all as excited about this project. It’s really very, very innovating. Jack.

Jack: With regards to sustainability--

Lynda Honberg: Do you want these recorded, too?

Jack: I don’t know. With regards to sustainability, do you think the state of Florida--would you have any problem in purchasing this equipment out of your budget now that you’ve seen how it can work?

Dr. Jerry Williamson: Would I have or (inaudible)?

Jack: Either way. No, no. Would it be a problem for your center to purchase? By the way, how much would this equipment cost you?

Dr. Lise Youngblade: Can I take--

Dr. Jerry Williamson: Yeah, go ahead, Lise.

Dr. Lise Youngblade: --find out a budget (inaudible).

Dr. Jerry Williamson: Yeah.

Dr. Lise Youngblade: For the kind of equipment that we’re using is your basic unit with basic (inaudible) is about a $20,000 up-front investment and then ongoing line charges to support that.

Jack: How much money?

Dr. Lise Youngblade: Well, it depends. If you’re tying into something that--because it’s based on phone lines, so if it’s long distance, we budgeted for our long distance ones about 6,000 a year.

Jack: Okay. It sounds to me, forgive me, like very small amount of money to your health center. Now here’s my question (inaudible) is it impossible to get the Bureau of Primary Health Care to encourage rural community health centers to actually use this equipment, so we don’t have to worry about sustainability within the limited amount of money that we can provide? That’s my first question. Second question, with the help of Family Voices, can’t we get the state--can’t we make an appeal to the Medicaid office in the state of Florida based on your experience (inaudible) consider making telehealth a reimbursable service?

Unidentified Speaker: Definitely.

Jack: And then we won’t have to worry about (inaudible) demonstration budget to sustain this.

Dr. Lise Youngblade: Absolutely, and so can I answer your second question first. We are working, in fact, there’s a meeting in a few weeks to actually meet with AHCA, Agency for Health Care Administration, that’s who administers the Florida Medicaid program; CMS; and SCHIP program to talk about exactly how we’re going to reimburse. You have to understand that, you know, there’s precedent in that 23 states reimburse, but there’s also precedent in that 27 states don’t reimburse, so although it’s, you know, it’s new and there’s definitely support and certainly when you talk about anecdotal case examples, everybody wants to reimburse it, but Florida, unfortunately as many other states, has some budget problems, some huge deficits.

Jack: This isn’t the time. I know that Medicaid (inaudible)--

Dr. Lise Youngblade: It’s the time is the problem but the—

Jack: What about visiting with Betty Duke who’s our administrator because--

Dr. Lise Youngblade: Yeah.

Jack: --she is very big on telehealth. Okay?

Dr. Lise Youngblade: Mm-hmm.

Jack: And she controls the budget for the Bureau of Present Health Care.

Dr. Lise Youngblade: And this is another connection that we’re trying to make is to get--is to make connections with Bureau of--yes, we know this.

Lynda Honberg: No, we’re trying to and we know that. We’re trying to make those connections, and, you know, in terms of just so you know in terms of the Maternal and Child Health Support, keep in mind that our funding is for the infrastructure and not for the actual telemedicine in Quinton. So (inaudible)--

Dr. Lise Youngblade: CMS provided that.

Lynda Honberg: Right.

Dr. Lise Youngblade: Phyllis provided that. This doesn’t. Yes.

Dr. Jerry Williamson: If I can comment on and know of anything--I didn’t hear you were beating the other (inaudible). I think that we’re at a point right now where somebody brought up the issue of trust. Many of our patients are undocumented and because of that, they are very, very reluctant to appear before any kind of a camera, they’re reluctant to sign anything that is not something that they understand. I mean, I can give you as an example with our when we put up our notice of privacy practices or they get the privacy and ask them to sign that they received that, they became very, very, very anxious about what it is that we’re asking them to sign. So I mean it’s that one piece. The other piece is I don’t know if I have convinced all of my health care providers that this is the way to go. There is always some skepticism. Well, this is really not going to work and whatever, so I think with that in mind it would make it a little bit difficult putting aside the cost of it to just going at the expended dollars for that kind of equipment right now, but I would think over a period of time once we’re able to go ahead and bring that trust to the patient as well as our health care providers, the answer is yes. But that dollar piece has to come to the plate, and I agree with you entirely. If this is not funded and for it to be sustainable, we have to have Medicaid or (inaudible).

Connie Wells: And for FIFI we have a really good relationship with the governor’s office as well as the Medicaid, but one of the things that even though we’re a family organization, we can’t walk in without really good data and dollars and cents because everything’s a business now, especially right now, so we kind have been waiting for some of the data to actually come back on how much it costs and what it actually does for families besides makes everybody feel good for what they’re doing.

Jack: Well just a few of those $150 per trip.

Connie Wells: Definitely.

Lynda Honberg: Right.

Dr. Lise Youngblade: Well, that’s it, and actually there’s a very interesting telemedicine also it’s funded by CMS a statewide demonstration. They do diabetes telemedicine, and they have shown incredible cost savings because of transportation to be able to do the telemedicine clinic. But now the problem is, you know, doing the clinic as Dr. Williamson said if you’re not reimbursing, you know, the physicians on both ends, then there’s limited incentive, so some of the things that we’re exploring are the use of store-and-forward technology at which, you know, the end of a clinic a doctor can look through multiple records and consult that way. But there are HIPAA issues with that in terms of technology and what support. We had encryptions that are needed so support it and so on, so it’s a really complicated bottle of wax even though at the core of it, it makes so much inherent sense.

Lynda Honberg: Let me also comment in terms of just the time frame, and I’m sorry I didn’t bring it up before that these grants were just awarded last year, so we’re really, I mean--

Dr. Lise Youngblade: We are at the beginning.

Lynda Honberg: --in terms of getting started on the issues, and we just had a phone call just the other day that I’ve had actually with all the grants that are funded through my office to talk about sustainability, and the things that we brought up were making the connections within HRSA with, you know, the telemedicine, the World Health Program, with Bureau of Primary Health Care, so, you know, I appreciate your thoughts, and, you know, we know that we need to do those things. So, Phan, did you have a question?

Phan: I was just going to say the other funding source could be your bioterrorism money that’s coming into the states. Particularly from BT if you’re looking at that, they look at infrastructure, they look at funding, they have more money than anyone else in any of the states. It’s the one place that and abstinence gets your--you have money actually coming in, so I would be right at the table with that whole group of people to look at infrastructure and that’s telemedicine.

Dr. Jerry Williamson: Well it’s interesting that you mention that about the BT because in our community, unfortunately, it was at a time where the other half of the telemedicine, the recipient, wasn’t telemedicine available. But I’m not sure I even shared this story with you, but we had on a Saturday a patient that came in about five months ago when the smallpox issue was at its hype, and it was on a Saturday and this patient came in with skin lesions that we said, “Well, it’s smallpox.” And we had a shut down. We went right from protocol--

Phan: Use that.

Dr. Jerry Williamson: Yeah. We went right from protocol, and the physician at that point wanted to call me, and I said, “Find out if the hospital if they can receive this by telemedicine, and we could send it.” Then he couldn’t, so what they had to do was have the Health Department send in an infectious disease expert. In the meantime, the patient was deteriorating, so we wanted to get the patient into the hospital. The hospital says, “No, you can’t bring this patient in here. Not with smallpox. What are you nuts?” So we were really at a dilemma. As it turned out, the patient did not have smallpox. We couldn’t retrieve the patient’s chart. This happened to be an HIV patient who couldn’t tell us he was an HIV patient who was on the new anti-retroviral and was having an allergic reaction to the anti-retroviral. So but this would have been the perfect way to go ahead in telemedicine--

Connie Wells: CMS was at the table when we wrote the telemedicine, when we wrote the Bioterrorism Application Grant, and they did write telehealth into it or tried to. But writing telehealth into it and supporting the Grandmother’s Project is actually two kind of different things. They didn’t write in the Grandmother approach. That (inaudible) grassroots approach even though they did write in enhancements for teleheath which ultimately could benefit that.

Lynda Honberg: How about some of the other folks, I mean, in terms of the application in your states. I know there’s--well pretty much every state I think even the more urbanized states have a mix of urban and rural communities. Anybody have any sense of how this would work in your states?

Unidentified Speaker: Well, I have two questions. Yes, we do have a telemedicine program, and I sure applaud what you’ve done because it’s really created--has given me a lot of ideas to take home. One of the areas that we have tapped into is some of our existing contracts that we have because that’d be off of the children with special health care needs. We have some direct surgery contracts, so we’ve actually built those, put some dollars into those contracts where we have supported them basically with some seed money and then they are also using some of their dollars because there’re looking at it as really another cost-effective way of providing services for all the reasons that you have stated. My question is, so far have you looked at any kind of clinical or organizational guidelines or do you intend on it as you go forward to work around?

Lynda Honberg: Jerry, what’s the--

Dr. Lise Youngblade: Not in the context of this grant because, I mean, what we set out to do what our goal was really it was to screen children and get them enrolled with insurance, so the application of telemedicine is actually add on to this project. We are starting to think about, you know, guidelines in a couple of different ways. One is obviously the reimbursement things that we talked about, but then secondly, sort of the legal guidelines that are involved in telemedicine and particularly around the use of nurses on, you know, one end or the other. That feeds into reimbursement but it also, you know, is the legality of using it. And then also the issue of store-and-forward because that wraps into HIPAA, and actually the HIPAA thing’s been an interesting--I mean, it was a little bit of a digression, but it’s been an interesting let’s say challenge to work around with this project because essentially we’re providing services to families, but the University does not see it that way. They see it as, you know, because we have an evaluation that we need to--this is a research project, and so we have a ten-page consent form that we have to ask families to sign. And when we wrote the proposal and got the IRB approval, it was before any kind--we couldn’t even do the screening. They had to sign and this ten-page thing that says we’re going to access their private information and yada, yada, yada. We’ll treat it confidentially. We’ll protect their rights, but, you know, ten pages later can we just do this quick screening? So it took, you know, ten minutes to explain the form. It was awful. Some sort of cosmic luck was with us, though, because Kidcare changed their application such that now the screener is on the back of the application. So we are allowed to provide application assistance without them signing that form and because it’s now on the back. It counts as quality assurance, not research, so it’s actually helping us a little bit--quite a bit, actually, because we can look and see oh, it looks like your child might qualify. Can you just take a few more minutes? We can get you hooked up today and sort of do an initial screen that way rather than the consent form first which for the families that are especially undocumented, you don’t want to sign anything and see this very official, you know, ten-page thing that’s stamped all over with the IRBUF seal, the Department of Health seal. It’s very intimidating and despite the fact that we have outreach workers who are very patient, very reassuring, you know what? If I was one of those families, I probably wouldn’t be signing it either. So, you know, Kidcare not meaning to help us actually really quite helped us out of it.

Lynda Honberg: Jerry, did you want to add anything to that?

Dr. Jerry Williamson: I just--no, that was--I couldn’t add any (inaudible).

Lynda Honberg: Jack.

Jack: Given the cap on enrollment--

Dr. Lise Youngblade: Mm-hmm.

Jack: --and I guess Medicaid is--

Lynda Honberg: Mm-hmm.

Dr. Lise Youngblade: Yes.

Jack: Is there any way you can shift your project’s emphasis as long as the cap’s in place from speedy enrollment to facilitating some actual consultations?

Dr. Lise Youngblade: Yes, and actually that’s one of the goals that we think the Grandmothers are going to be doing is facilitating families doing that. I mean, the caps are a problem, and as Phyllis said, there’s a special session tomorrow on the floor of the legislature on the issue all morning is to talk about the caps. There are, you know, the waitlist issues are growing exponentially. Some of the diagnoses on the waitlist are appalling, and we have life-threatening things on there. Brain cancer, encephalitis, spina bifida, and so it’s a huge problem. Now the caps have been in place for a while. I think now, unfortunately, it got to the point where it’s getting attention. But that’s coupled with, you know, a huge deficit that Florida Medicaid’s projecting, so it’s a barrier. I mean, there’s a lot of barriers to doing this project, but at the same time, an awful lot of opportunities and flexibility would be the key thing to try and work around those barriers but still provide the services that we can to families.

Lynda Honberg: I’m sorry. Actually this session got squeezed a little bit because lunch took me a little bit longer, I know. So he’s done that. Want to go get your break. Couple things. One, I notice I don’t know if everyone’s handout some of them missed I think it was the even or the odd numbers, so hopefully this’ll be posted on the website. Two, please fill out your evaluations. It really helps in terms of planning. I was on the planning committee for this meeting, and it really helped. And I just want to end here with, I mean, this is, you know, been in terms of the telemedicine. I think a lot of people are often think in terms of rural, the more isolated communities but just a quick story. I live here in the Washington D.C. area. Everyone thinks it’s the mega center for specialists, and I had to travel with special health care needs and as many of you know, can’t get an appointment with the endocrinologist. One of the many medication my daughter’s on is growth hormone and finally in frustration--it’s a six-month waiting list to get an appointment with the endocrinologist. I actually said to the endocrinologist who is at Georgetown, “Why don’t we sit in our pediatrician’s office, use telemedicine. You can tell the, you know, pediatrician what you need so, you know, you can get, you know, a really good-- so my daughter can get really good health care--