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

Dr. Lise Youngblade: I’m going to try and talk without the mike. Can you guys hear okay in the back?

Lynda Honberg: Do you want me to take that, and you can stand up?

Dr. Lise Youngblade: No, that’s okay.

Lynda Honberg: Okay.

Dr. Lise Youngblade: I’m really delighted to be able to talk to you today about our project because it is a really wonderful collaboration between a number of different partners, only some of whom are represented here today, and only some of whom I’ll be talking about. One of the ones that is not here, though, that I’d really like to give some credit to for this project is Donna Wegner, who is a project director that’s been an incredible partner not just to this project, but to a number of projects funded by MCHB. What I’d like to do today is to tell you about a four-year project, and it’s a four-year project in the sense that we are funded for four years to do the project, but we certainly are hoping and do not expect that this is a four-year project. One of the goals that we’ll be talking about at the end is the issue of sustainability and how you create partnerships so that once you have the core thing funded and the groundwork the foundation laid, the project can take on a life of its own and extend well beyond that core effort. The purpose of our project is to really link Florida’s Title V Program, Children’s Medical Services, with local community health centers, and the purpose of that linkage is to really try and reach and identify uninsured children with special health care needs in Florida and through that effort to get them enrolled in insurance.

We’ve chosen to focus on underserved communities that traditionally have faced numerous barriers to care, and I’ll talk about those in a little bit, but primarily some rural areas and communities that are ethnically diverse. And then so the very unique twist that we’ve put in this project is to use technology or telemedicine, telehealth, as a way to facilitate evaluation and enrollment in Title V CMS. Want to give credit to our project funders. Again, thinking about this as a partnership, we couldn’t do this project without the very real, very tangible financial support of the Family Maternal and Child Health Bureau, but also through incredible matched support from the Department of Health Children’s Medical Services who’ve provided equipment, line charges, technical support, and nursing coordinators, as well as a number of consultants who’ve worked in the communities doing outreach and who’ve been very generous with donations of their expertise.

So why Florida and why now? Well, Florida is the fourth largest state in the U.S. It also has one of the highest uninsurance rates in the nation. Fourteen percent of Florida’s children are uninsured and actually that statistic was calculated before the economic downturn, so it’s probably an optimistic estimate. Florida also has a high level of poverty, and for children in the state of Florida, what that translates to is 42 percent of children in Florida live in families at or below 200 percent of the federal poverty level. Combined with that, Florida is also a geographically diverse state which has enormous rural areas but also intense metropolitan areas. If you think about health care services and access, rural communities often don’t have access to specialty care, and families have to travel distances, but even in metro areas, families can have to ride enormous amounts of time on bus or by other means of transportation to access specialty care, so there’s challenges in both rural and urban communities.

Florida’s also ethnically and racially diverse, and what’s interesting in studies that we’ve done at ICHIP is we’ve demonstrated that uninsurance rates are higher among black and Hispanic youth, but using traditional screening tools to screen for special health care needs might actually under identify them. So, again, a high rate of need in those communities. One of the benefits or the assets in Florida, however, are community health centers which are an integral part of the safety net. Florida has a fair amount of community health centers. There are 27 of them whose mission is to provide health care, local community health care, and these facilities often do great jobs, well, do do great jobs, of providing primary care, but again, thinking about, you know, a facility serving a lot of clientele might not have the resources to actively screen children for special health care needs, to take the time to enroll them in insurance, and then to provide specialty care.

So we, as a demonstration project, identified four areas throughout the state where we could implement and evaluate the telehealth outreach project. We are working in currently three of them. One is in south Miami in south Florida which is in south Dade County. It’s an area called Homestead, high African-American, high Hispanic area. We’re also working, and you’re going to hear a little bit more about this from Dr. Williamson, in a community in Immokalee, which is a migrant community on the Gulf Coast. He’ll tell you more about the demographics of that area, but one of the challenges has been we identify a lot of children that don’t have insurance, but the mechanisms to provide insurance for them because of their migrant status is challenging. We’re also working in Trenton, which is in north central Florida. It’s rural, primarily white and African-American community. And then eventually we’ll be moving up into the Panhandle in about another year or so.

So to thinking about how to develop a system of partnerships to reach uninsured children with special health care needs, who needs to come together? Well clearly state Title V as the provision of insurance. We are partnering with local places of care, community health centers. We also need experts who know how to do outreach, know how to reach communities. We need family advocates who understand the needs of families, the services that they need, the sensitivities we need to have when working with families and what their concerns are. We need representatives from public insurance, Medicaid, and Title XXI, health care providers, and because at the end of the day we want to demonstrate that this project has had some affect on children and improved the quality of care that they have access to, we also need an evaluation team. And so here’s sort of a pictorial description of it. It’s a little bit--I apologize. The print is a little bit small but, essentially, it shows the general project partners that we’re working with. We have a partnership with the Maternal and Child Health Bureau, local community health centers, the Florida Institute for Family Involvement, Florida Children’s Medical Services, and even that is not a complete diagram because there’s--we have a partnership with the technology aspect, as well as the nursing aspect, as well as the administrative aspect. So these are just really global pictures.

We have a partnership with Kidcare outreach, well, what used to be Kidcare outreach. Unfortunately, it’s not funded any more from the state. There used to be local Kidcare. Kidcare is Florida’s Title XXI Program, SCHIP program, local Kidcare outreach teams, so we worked with them to understand about the communities that we wanted to be in and what we should be paying attention to. We also have an incredible project advisory committee made up of state representatives from the Florida Association from Community Health Centers; Community Voices at Miami; the Early Child Initiative Foundation in south Florida; Health Choice Network, it’s a network of community health centers in south Florida; from Medicaid; from Florida Healthy Kids; SCHIP; community health care representatives; and most importantly, parents who’ve been very helpful in identifying and helping us to get training materials prepared and how to talk to families.

So how do we go about making this partnership work? Well we identified two routes by which to approach families. One--and they’re both outreach, but I’m going to call them something different to identify them. The first is really inreach to families already accessing services at the community health centers. So lots of families, lots of children come through, but as I said earlier, community health centers don’t often have the resources by which to screen and identify children with special health care needs, so if it’s a pervasive needing a physician or a nurse picks up on it, they will get a referral, but there’s not the systematic screening. So we thought one prong of our approach definitely needs to be within the community health centers doing some internal partnerships with clinic staff, with nurses, with outreach workers that might have already have health insurance assistance, whoever, to identify families that are already there. But that is a select group as you might guess, right? They’re coming to the community health center. They have some contact with the medical system.

There are other families out in the communities who don’t, and so the second part is outreach to families in the communities. So let’s talk first about, really briefly, about the inreach component. Basically what we did is we hired a coordinator at each of the community health centers who’s trained and located at each center, and her job is to screen children as they access the community health center. So families come in. They’re waiting. She’s talking to parents who don’t even have children that day. They might be in for a visit for themselves. Anybody that has a few minutes she’ll go up to them and talk to them and say, you know, “I have information about health insurance. If you have a child, then certainly can help you with Medicaid application, SCHIP application. We also have a screener. If you think your child might benefit from some additional services, we can do the screening on the spot.” So if they pass the screener, and what we’re using is a CSHCN screener. It’s a five-item screener. If they pass any of the components, we’re using a real liberal definition to try and reach as many children as possible. If they pass the screener, we refer them on the spot to CMS. And how that’s done is CMS has provided telemedicine equipment at each of the community health centers.

The telemedicine equipment is direct linked to the regional CMS offices in those areas of the state, so what they do is they call up to CMS and say, “We have a family here. They’ve passed the screener.” They dial in with the telemedicine equipment, and it’s face-to-face contact between the nursing coordinator at the CMS end, and then the family supported by the outreach worker at the community health center. So it’s face to face. It’s family friendly. If they are children, sometimes the outreach worker will just step out with the kids and occupy them so the parents can talk one on one. So they’re referred immediately, and the benefit is, again, think about the families. We’re in very low-income areas. A lot of families don’t have telephones, so to try and do a referral through the mail or to schedule a follow-up appointment is--families get lost to the system, and this is an attempt to make sure that they don’t. If the child doesn’t qualify for CMS or doesn’t even want to do the screener, we still help them with the application for Medicaid and SCHIP.

The flip side of outreach is, of course, outreach to the community, and so what we have proposed to do is to use elders in the community that families trust, and who to trust more than Grandma. So we have hired Grandmothers to reach families in their neighborhoods, and the Grandmother’s job is really as lay health. They don’t screen the children. They don’t provide any kind of health care except support to the family, information about the facilities at the community health center, the services that are provided by the telemedicine equipment, and talk to families about the importance of regular health care; of health insurance to get that health care; and especially if they know of children with special health care needs, to be able to use the community health center as their medical home but still be able to reach out to specialty services. So they provide liaison support.

I just want to tell you just to give you an example of the women that we have, we have two Grandmothers in Immokalee. Angela is a 67-year-old woman who’s Granddaughter has a special need, and she’s been involved with CMS since 1994. That’s approximately nine years. She’s bilingual in English and Spanish. She’s well known in the communities. She has lived in Immokalee since the early 1960s, so she’s well entrenched in the community. She volunteers for her church, and she’s helped residents complete applications for food and clothing. Another Grandmother in Immokalee who’s been there since 1955. She speaks English and Spanish. She’s both bilingual. Two of her children were born there, and she’s been involved with CMS for many years and, in fact, her daughter now who’s grown is a nurse in the CMS program. She’s well known in her community.

Many of the residents call her Monchita, so she’s well known. She’s retired from farm work, but at one point was a respected crew boss. Again, very active in her church, very active in her community and, in fact, when we called her to first talk about the program, she was so excited that day that before we even said, “Yes, come to work for us,” she was out talking to her neighbors seeing who had special health care needs and who they knew that had special health care needs, and could they come to--and called us with a list of people. So we’re hopeful that this is going to be a very good model to get people into the community health center. It’s an untested model, so there’ve been some attempts to use Grandmothers, you know, for outreach for pregnancy care and other things, but in this population with links to community health center, this is really an untested model, and so we’re very excited about it.

So let me just talk for a few minutes about partnerships that being the theme of this meeting. We’ve created a lot of partnerships, and I’m calling them process partnerships because they really--it is a process. We work with them. We learn from them. They learn from us, and at the end of the day, this evolution of partnership comes up to a better thing than what the two pieces or multiple pieces have brought to it at the beginning. So we’ve had partnerships for training in education with outreach experts, local advocacy groups, in-house and I mean in-house--I mean within the community health centers. Some of the larger ones have already folks that they’ve employed to help with insurance enrollment. We’ve tried to do in-service training and education about our project, you know, how we can help them, how they can help us, and we’ve also have a partnership for training and education with families.

It’s just that we have two wonderful family advocates on our advisory board, and we’ve worked extensively with them and with Connie to make things as family-friendly and culturally sensitive as we can. We also have partnerships for ongoing clinic activities, and, you know, some of the partnership involves coordinating activities and use of facilities. These are typically buildings that are bursting at the seams, so there’s, you know, to add one more thing where we have to have a private place with access to that telemedicine equipment in a place where all space is already dedicated, has taken a bit of collaboration, a bit of elbow grease, and really trying to be sensitive to work out, you know, schedules and use of the equipment.

We also have ongoing partnerships with other community organizations serving the same population, so we’ve made outreach to the faith-based communities. To schools, we have our outreach workers doing presentations. They did at the beginning of the school year to all the PTAs, to schools in the areas, as well as meet with the principals, provide--we’ve printed up gazillions of fliers and brought them to schools and daycare centers. We’ve also made some interesting connections to other organizations to think about hiring Grandmothers. The last thing we wanted to do was to post an ad in the newspaper, and although it might have been okay, we wanted to have recommendations for Grandmothers that were well-known in the community, that had connections to other organizations, and so once we started inquiring about how to go about and find these Grandmothers, it led us into a whole other network of organizations that we could tell about what we were doing, they could tell us what we were doing, and in the end, families will have access to more services.

We also have other community health centers in this project, so not only are we having, you know, sort of within community partnerships, but what goes on in one community health center informs what goes on in another community health center, and so there’s incredible synergy between, you know, the activities that worked, activities that don’t work, the successes, the challenges in each place, and we all our learn from that. Now one of the goals, as I said it’s a four-year project but we want it certainly to last longer than four years, is to really think about this issue of sustainability, and so number one on my list is partnerships. As the project gets ingrained, as people start to think about community health centers as a focal point in children’s medical homes, as there’s technology placed in these centers and connections made for how to use it, as there’s connections with insurance and funders for telemedicine care and reimbursements come back to the community health center, as all of those things become institutionalized, those partnerships will take on a life of their own. And as they take on a life of their own, the project takes on a life of its own. I also put reimbursements up there.

One of the incentives for sustainability and why we thought this was such a really interesting model to work with is community health centers get money to take care of people without health insurance, so there’s a pot of money there, but the more people there are, the more that money shrinks, right? If the community health center becomes primary care part of the child’s medical home and the child’s enrolled on insurance, the reimbursements come back to the community health center, right? So it becomes a source of funding for the community health center, thus contributing to sustainability. Okay? This project also provides an infrastructure can support multiple activities related to children’s health and special needs, so we’re using it, right now, in a very specific way. We hook up to Title V to do evaluations, but eventually, want ‘em to use that equipment to do telemedicine clinic, so families don’t have to drive to Miami or don’t have to drive to wherever to go get the services they need. They can link through this great technology to physicians.

We also can use this equipment and have plans to use this equipment for education. Community health centers that in rural areas that don’t have access to educational programs at university-based health centers, grand rounds or whatever, can use this equipment to direct dial in, thus getting access to up-to-date information and research and a community of physicians who can support the efforts at the community health center. It also can be used for physician consultations with specialists, so the child doesn’t even have to be there. The family doesn’t have to be there, but a conversation where you might need to, for example, take a--some sort of a shot or a video, an x-ray, send it and be able to have a conversation where you’re both looking at the same thing at the same time and can point to things is also another use of the equipment. So there’s a lot of uses of the equipment.

My point is only listing a few, but what this is, is an infrastructure, and the more uses of it there are, the more investment there is in not just the equipment, but the services surrounding it, and in the long run, the more sustainable it can be. So, okay, it’s a great model. Now we want to know does it work? So we also need research and evaluation components, too, and so very briefly, I just wanted to tell you we’re just the beginning of sort of starting to analyze data from the first year, but what we decided we would need to do is to collect data on the number of families contacted, and as of now, we’ve talked with about 500 families that represent about 800 children. We need data on the number of families assisted with insurance and the number who are enrolled in insurance. We’ve assisted 313 families with applications. That represents about 624 children. What about the number of children screened for special health care need? We’ve completed 174 screeners. On those screeners, about 24 percent have screened positive, and all were referred to CMS. So a bit higher rate of identification of special health care needs.

As I said, we’re using a very liberal definition of it, but there’s also a population with high needs. And about 25 percent are on the insurance roll, so if you’re looking at enrollment forms that are in insurance now, the bad news, however, is the majority of them are on a waitlist because of caps that Florida has implemented, so the bad news to this great model is we can find the kids, we can help them, but then they get stuck on a waitlist. The other issue, and I’ll just say this briefly. We can talk more about it later if you want is about another 21 percent are on another waitlist because they’re non-U.S. citizens, so there’s issues of immigration and so on. So if you add up, that’s a significant number of kids. And then eventually, we want to also know whether, you know, these numbers vary by whether we’re finding them in an inreach setting or an outreach strategy. And then last, I’ll just tell you we’re doing surveys with the families as they enroll, and six months later we want to know how satisfied they are with the telemedicine enrollment strategies, and so far, just glancing at it, everybody’s been highly satisfied.

It is a very family-friendly procedure. The technology can be daunting, but it’s not. You know, the first few minutes there’s a little bit of unease, but then it gets over, and the kids are actually the best one. They want to try out the computers. They want to try out the hand-held cameras, and so they’re actually the leaders with their parents. And then after six months, we want to know are children accessing services? Are they still enrolled in insurance, or are they still, unfortunately, on the waitlist? What about out-of-pocket expenses and unmet needs? And we also want to know from the perspective of our partners; do they think the model is working?

And the last thing I wanted to say is, you know, part of any kind of model evaluation is the issue of cost effectiveness. And there’s, I think, a really great incentive to say, “Oh, this is a great model because it saved X dollars.” But I think we really need to be careful in thinking about that, and this is my own personal opinion and a bias, and so I’ll be real clear about that, but I think this really has to be balanced by the increased access to care and quality of life improvements for the kids and the families. So, you know, telemedicine costs money. You have to buy the equipment. You have to think about the line charges. You have to think about, maybe, the outreach strategies, and maybe in the end, it might end up costing a little bit more, but if on the flip side the children are getting the services they need, have access to insurance, and their quality of life improves, then I’d say it’s well worth it. So, thank you.