MCHB Conference Webcasts
2005 EMSC Annual Grantee Meeting
April 12-13, 2005
CONNI WELLS: It's great to be here. I'm excited that we made it. Karen and I both drove, but not together, on separate days. My home is, my house is 12 feet in the air, but we're also under a foot and a half of water, so loading up the car and getting out of our driveway was interesting. And as I was leaving out the driveway in my rental car, we got stuck. And there were water moccasins - don't laugh Lizzie - there were water moccasins in the water. I looked at my husband and I said: I'm not getting out. So I made it out and I find out that Karen went to her mother's house, and they're under water, and she got stuck as well, only she had to get out in the water and get someone to pull her out. So we literally swam here.
(Laughter)
What we want to talk about today is family involvement in disaster planning response and recovery, and we've had a wonderful opportunity this past year. We keep trying to frame things in the positives. We had a wonderful opportunity to really test our system over and over and over again, four different times in a period of two months.
You know often we set up a program and you try it and it might be a long time before you actually get to test it and it kind of gets old. Well, we had the opportunity to keep doing it over and over with the hurricanes, and we want to share with you what we did as we tweaked that program to move us from where we were at the beginning to where we are now.
I did a survey with several professionals and families, and asked them what family involvement meant to them, because, you know, how many of you in here are family members? Okay. How many of you are here as a family member? That is your purpose for being here? Okay. And how many of you are here and your purpose is a professional role?
Okay. You know, what we found is that family involvement means different things to different people depending on who you ask. And so often in our grants and in our programs, it says that we're going to have family involvement. But there's very seldom is there a definition of what that involves. So we did a survey, and I liked this professional's opinion of family involvement. He said I hear many voices speaking about family involvement. I seldom see how it looks like. He's Hispanic. In my role at the state agency level, I believe that families and other primary care givers must be fully involved in planning and service delivery for their children and its responsibility of the system. Mine and any other agency, program, community, support, et cetera, is to assure them the opportunity to be included.
So he really looks at it two fold. They need to open the door and then support them.
So family involvement, you guys know this. When we ask families what does it mean to be involved in your child's life, this is what they told us. Playing with our child, eating together as a family. Going to school and church, calling the child's teacher. Reading , tucking the child in at night. Asking the doctor questions, requesting help and telling others about our family.
This doesn't list sitting on a committee. Being on an advisory group, serving as chairperson of a work group. Most families do not define family involvement the way that we do. So when we ask where are the families, maybe the families are involved. And we haven't just looked at the way that they defined them. So one of the things we did was we sent out another survey and said, then, why don't you think families are involved. What keeps families from being involved? And we asked 60 professionals and 60 parents, and Karen is going to share with you what the professionals said.
KAREN WIGGINS: In my role starting to Save Kids Coalition I can relate to this because one of the hardest challenges we had was to get families involved. And the professionals on the group, some of these same things that is in the survey is what we said. You know basically is how can we pay them? We can't reimburse them. They're going to have to spend their own money. How do I find a family that's interested?
And you know there's probably a lot more families interested, they're just not asked. You know, who is going to take care of their child while they're doing this? A lot of them are working parents. They have, you know, child care issues, and also a lot of times this is at a time when the child is not in school. Are they really interested? They probably are. And like I already said the current job responsibility of the parent. And we also said that you know travel and transportation is going to be the biggest issue. That's what professionals thought that, you know, they'll have to travel to this meeting. They're not going to have the transportation. They're not going to want to do that. And kind of sort of talk about what the family's perception was.
CONNI WELLS: We thought this was interesting. This is what families said. The least reason why they're involved was because they didn't have a ride. Next to the bottom was their need to be paid for their involvement. Fourth was they didn't have anyone to watch their child. Third was they couldn't get time off from work. Number two was they didn't really know how to get involved or what to do. The number one reason why 60 families told us that they were not involved more in their communities in leadership roles was no one had ever asked them.
So one of the things we started trying to do was trying to build these partnerships beyond the words that were there and beyond the surface. You know have your definition of family involvement. You have your definition, and we had to figure out how we were going to bridge that gap and make it into something meaningful and set aside personal differences and build on those commonalities. We found that disasters were a wonderful link.
You know, disasters pull communities together when nothing else does. And it gets beyond all kinds of things that might be happening. Cultural differences within a community. Biases among different groups. It cuts across - a hurricane doesn't care if it tears apart a $3 million home or a $30,000 trailer. It really doesn't care. So it can commonly affect everyone. So we found that disasters were a very common linkage for us in bringing together communities and families.
KAREN WIGGINS: And some of the partners that families can link up with is one of them, of course, is emphasis EMSC. I've learned everything I know about this topic from Conni. I inherited Conni when I came to the state Conni was already involved. So I have been very blessed. Now when we start thinking about a project the first thing in my mind is, okay, what about family involvement, let's call Conni. You know, Conni, how do we do this? How can we do this. That's one of them. Homeland Security. There are so many different organizations in Homeland Security now. FEMA. Unfortunately, we know FEMA very well. If you read the newspaper yesterday FEMA put out a lot of extra money in Florida . But FEMA is one of the Homeland Security.
The Coast Guard is part of Homeland Security. You'd say, well, why would you partner with them. You'd be surprised in a hurricane situation when you need a Coast Guard to transport individuals and families and patients and that kind of stuff. So they're part of Homeland Security.
Emergency management. How many of you know your emergency management people in your community? How many of you think that emergency management and EMS is the same thing? Good. You guys are educated. Because there's a lot of people when you say emergency management, especially the lay person, they believe that emergency management and EMS is the same thing and it is not. In all communities emergency management is going to be that group that is planning for that disaster and is bringing all the different individuals and community resources together. And last but not least is fire rescue. In Florida , Conni and I both live in the same community, and the same county. And we don't even have a hospital in our county.
Now, there are people that would tell me that our county is not rural because by your definition of some of the people we don't meet that definition. We're not in Montana where there's 300 miles between areas. That's what I've been educated. But we're in a rural community where it truly is rural. The population is not very much. 68% of the land is federally protected forest. So there's not many people down there.
And fire rescue there, fire and rescue is volunteer. Now, you know, for most of the people in the state of Florida that's not something. But that's probably something that all of you deal with much more than a lot of Florida does. And so one of the good things is that you can make the community or, excuse me, the parent or the community can make contact with fire rescue and get them involved with what's going on for your child or for the children. And that makes a big difference.
CONNI WELLS: Another thing about the fire and rescue is within communities where there is fire and rescue, that's often where a lot of your community leaders are also located at. If you look into the fire and rescue in those community leaders, it's interesting to notice what kinds of people are actually involved in it. And one of the trends that we're seeing in Florida, and I'd be interested in knowing if anyone else is seeing this, we're seeing more and more young people join fire and rescue. How many others are noticing that as well? Good. Because we are so rural, our high school did a really neat thing. They were encouraging - they noticed that most of the fire and rescue were getting very old and they weren't able to crawl into the crawl spaces in some of the buildings. And they actively went out and started recruiting younger boys. And they happened to recruit my son.
And what they did is they gave him a radio, a fire radio, which was a really big deal to him. Now it drives us nuts. But they gave him a fire radio. And the high school allowed he and the other kids that had been trained as first responders and were part of an active member of the force to bring their fire radios to school. They left them at the office. And someone in the office a receptionist monitored the radios. If a call came in for Station Four, which was my son, they would call him out of his class and he was able to go and respond. That was how supportive the community was.
But that was something that you know that the fire chief really had to work out with them. The other thing the fire chief did was he came once a month and visited all of my son's teachers and asked them is he in class? How is he doing? Is he behaving, so on and so forth. So they recognized right away that need to link with the schools. And we're going to talk about that again in a couple of minutes.
UNKNOWN SPEAKER: How old was he?
CONNI WELLS: He was 17. So he was limited in what he could do. But he still - he's 22 now. He's finishing up EMT school. His professional goal is to be emergency management director for the state of Florida .
(Laughter)
And he knows that's a very political position. So he's taking a lot of political science classes in college, too.
But, you know, that all started just from someone reaching out and saying, hey, and because we are a rural county there's not a lot for the kids to do. These boys are running through the woods. Generally they're poaching. They're running through the woods. They're hunting in off season. They like that kind of stuff already. And so getting them when they're young and engaging them and bringing them on really seemed to work well.
How do you make connections then with all of those people? Like how did we do it? Let's get down to the real grit of some steps that we can do to make a connection. Family involvement, I have found, is generally the last thing on everyone's mind, unless you're Karen and you're worried that Conni is going to call and say have you got families involved in that or Beth's state where she's going to call them up and ask them and the same with Ruth.
But you know often like Homeland Security and we have a bioterrorism grant in the state of Florida , and there's a disabilities planning committee attached to it. And they didn't have any family involvement in it. They don't naturally always think of that. And so what I started doing was, if I saw something in the newspaper about somebody doing something, right away I fired them a letter. Send them a letter and say what are you doing for family involvement?
Generally what happens then is they say: Oh, well, yeah, you can be involved. Well, that's not always what we want is just, okay, a token you can come and sit in on our meetings. So I follow up with a phone call to make sure they got my letter if I haven't heard from them and I set up a meeting. At that meeting I try to give them some very specific things, just like I'm doing right now, kind of train them on everything that families can do. I give them some examples of how families have been involved in really shaping and changing things, not just in the state of Florida , because I like to create a little bit of peer pressure. I might tell them about something that happened in New Jersey . I might tell them about something that happened in New York or where I know that families are being involved in New Mexico or in Georgia . I tell them about Jane's program and how she changed things on a little island just as a volunteer and actually got the first EMTs to come out to the island and its history.
I tell them about things like that and try to broaden their idea of how they can use us. And then I develop an offer of partnership. Sometimes that offer of partnership needs money. And so I will flat out say to them: If we're going to be involved in this, we're going to have to have some kind of mechanism to pay us our travel, our respite, baby‑sitting, if it's youth involvement, say we wanted youth involvement, we wanted Lizzie to be involved with us, the first thing I would say is, you know, not only are you going to have to reimburse her all of her travel expenses you'll also going to have to pay for a caretaker to travel with her. So we try to be the negotiators, not necessarily the people doing everything. But we try to negotiate. Partly because a lot of the family community leaders out there don't know how to do that negotiation. They don't know who to talk to and they need someone to pave that road for them.
So I develop an actual offer of partnership. And one of the things I always remind them of, I have a list of all the state and federal statutes that require family involvement as a component of their funding. And I very often say let me see now where do you get your funding from? And they'll tell me and I'll go down through the list and say man you're required to have family involvement. I'm surprised someone hasn't said something by now. Let us help you fulfill this federal mandate to have family involvement. We would like to do that for you. And so that's one of the first steps that we do.
And then in maintaining those connections, this is where it gets a little bit harder. Once you've said you need to have family involvement, it really puts a burden back on you as a leader, because now you gotta follow through on it. You don't want to just have your name listed and then not show up to the meetings and so on. Just like this Friday is, how could they have scheduled the state advisory meeting the same week as this meeting? But Friday is the state advisory meeting. And I'm not going to make it. So my responsibility is going to be who is going to come. Who is going to represent families? Are they going to be educated and know what they're supposed to do and so on.
So you have to make a real focused effort and make sure that it's ongoing. Have some reality check points. Not only for the professionals. The professionals not only have to have reality check points within themselves but so do families. I mean is it realistic that Conni is going to be the only parent in the state of Florida that's going to be serving as a partner to all of these. That's really unrealistic. Is it realistic that my organization is going to be the only one? That's really unrealistic as well. So who do I have a partnership with? Family Network on Disabilities. The DD Council, as we heard today. You look at all those other partners. I've checked around, and except for the Heroes Award, there's really not an academy of volunteerism in emergency medical services. So we don't all need to be garnering any points because, you might as well share what it is you're doing. We're not going to retire as the guru. It's just not there. So we need to make as many partners as we can, so that if a disaster does happen, there's more than one person to lean on.
I'll tell you when the hurricanes hit, the first one was a little exciting. I have to be honest. It was a little exciting. You know participating on the planning and the phone calls and you know having the Governor on the phone call saying, Conni, have you got the parents mobilized. That was really exciting. The second one, I was a little nervous, because I was afraid we had been set up to do maybe more than we actually could do. By the fourth one, when it turned towards the state, I was sobbing hysterically. I was crying. I was calling everybody I knew. I was saying I need more help. We can't do this. And I actually was at a national meeting when we realized that the last storm was going to hit Florida . And it was a mental health meeting and it was awesome.
They signed up, because one of the things that we did was we helped evacuate certain areas where there were difficult populations to move out. And they all signed up to make phone calls from their home state to help us evacuate families from Wyoming, from California, and one of the things that was really nice is they didn't have any disruption in their phone services. They had electricity. They hadn't been living out of an ice chest for the last four weeks, because there had been three storms before it. They weren't burned out from a lack of sleep. They didn't have alligators in their front yard and snakes in the bathroom from flooding. These people were in a position where they could actually help us.
So other state leaders all across the nation, we had 15 of them that signed up, and then we actually faxed them lists of families that we needed them to contact from their state to help us get them moved out into a shelter.
So you know marketing those partnerships and telling - I have to convince Karen sometimes why it's important for her to have me involved, because I'm a lot of work.
(Laughter)
I'm a lot of work. I'll bet you're a lot of work.
(Chuckling).
I'm just guessin'. But I'm guessin' Beth's a lot of work. So any place we go we have to convince them why they need to have us involved.
Disaster planning. What can families do during disaster planning? Now, in the state of Florida , when the hurricane is coming, we have a good two weeks to watch it come. There's pros and cons to that. There's the opportunity to plan but there's also the emotional turmoil of watching it come. It's like a slow death. But we can do a lot of family to family reaching out that other people can't. We show up at little league games. We can do the kinds of things that we're in the midst of families, dropping kids off at day‑care. Those kinds of places, families can actually reach out to other families and make sure they're prepared.
We can help identify what families do and do not know about disasters. I'm afraid that a majority of the families in the United States of America got their education about what to do during a tornado from the movie Tornado, that they're not going to seek shelter until they see the cow.
(Laughter)
So we have to be very careful about letting others, other professionals know. Karen, you know, eats, sleeps, dreams, she knows disasters. Families don't. And then I want to say something about families of children with special needs. We live in a disaster mode all the time. Every day is a crisis. So you tell us a hurricane is coming, big deal. Been there, done that. My kid stops breathing, we have to resuscitate her. We have the squad here all the time. You know this is no big deal to us. So often the families that are the most vulnerable during a disaster are the ones who are going to think they can ride it out because they ride out a crisis every single day.
We can educate families where other people can't. Because we talk like they do. And we can also educate professionals. I've been sitting in meetings at the emergency medical services for children's advisory meetings and we had a physician that was running it in the past and she would say something from a very physician point of view about prehospital care. And I'd be thinking, that's not going to work in Woloca County . We can say that. Where if Karen said to her that's not going to work in Woloca County . She probably wouldn't get as much attention paid to as a family member will.
Disaster response. When the disaster is actually coming, families can do a lot of family to family notification, and we can be community lead persons, and I'll tell you in a little bit of how we can do that. But it's kind of interesting to think that a parent leader that Ruth could be considered a community lead person. But let's be honest. If a disaster comes and we have to respond to it, and you ship in Karen from Florida to assist in New York in her community, and you have her there, who are the people in the community going to turn to first? They're going to turn to someone they know. Someone that talks like them. Looks like them. Someone they have seen in the grocery store. So family leaders can serve as key lead persons when no one else can. They can advise professionals on family needs. They can let professionals know, you know, you've brought in ten therapists to work with people to get over the disaster when really what the people want the most is to get the roof on their house and we'll deal with the therapy later.
By the way, there's a - you know, Florida is famous for its wait list. There's a wait list in Pensacola still to get your roof since the last hurricane. Yes. And I heard there's still 200 homes in Pensacola without roofs on them and they still have the plastic paper and they're on that wait list.
We can assist in evacuations in ways that no one else can. You know, wouldn't it be great if we got to the point where, such as in Miami, if we had to evacuate large numbers of people, if people within communities were trained and responsible for making sure their neighbors got out of their houses? If it comes on the radio that you need to evacuate, you're less likely to evacuate than if Ruth lives in your neighborhood and she knocks on your door and she says I want to know where you're going.
Families can work in shelters and centers. At first we were told that families can't do that because they're not trained, and I'll tell you how we actually integrated lay people, families into the shelters to work. Families can work as resources and back‑ups. It's interesting in the first hurricane families weren't qualified as much as they were on the fourth hurricane.
(Laughter)
On the fourth hurricane it became mandatory for certain people working the state of Florida to serve during the hurricanes, and some people had literally been away from their families for four and five weeks at a time. And when the last hurricane started coming, there were many state employees who were nurses who put in for vacation time and they wanted to head out of the state. And their vacation times were denied by the state and it created a big controversy and that's when we jumped in and said, see, we told you, you should have trained more families, because we're not leaving.
And families can be that liaison between the families and professionals. I understand what a small family living in the woods in Wocola County goes through just to evacuate, the kinds of fears they have to worry about. Professionals don't always know exactly what kinds of things we encounter, such as for me when a hurricane is coming, if we're going to stay at our house, depending - we have a little scale that we use. If it's a level three or higher, we evacuate. If it's a one or a two, we stay. And say it's going to be a level two, and we know there's going to be some extensive flooding and things, my number one concern at that point in time is going to be very different than what Karen thinks my number one concern is going to be. It's probably not going to be food and shelter and water. It's going to be concern for the rest of my extended family and how we will communicate with them and how we'll make sure that they're okay and so on. So it helps for us to serve as that liaison.
KAREN WIGGINS: You know, what can the family do when it comes to disaster recovery? Conni's experience with the hurricanes and mine was totally different. I got sent as an employee of the state of Florida to Charlotte County , which was the first county hit by a hurricane. And there were three public health departments. There was one public health department but three different buildings in the county and two of the three were totally destroyed. I mean totally destroyed. And there was really no public health infrastructure.
So I got sent down with a team of nurses to assist the county in setting the public health department back together. Well, I'm not a public health nurse. I shouldn't say that. I work for public health. I'm an ER nurse I'm a pediatric ER nurse. So the entire trip down I was like I don't know nothing about adults. What am I going to do? You know, the whole entire time I'm telling these nurses: Guys I can triage I can tell someone looks sick but I don't know anything about these adult problems. But you know one of the things is that the experience was an eye opener. Most of what we saw coming into public health were public health patients that were part of the public health system and they came.
What we saw was very limited. I saw people that came to us. We were not looking for them. Now, there were other people out looking, but my experience was different. And in what we were doing, there was no one there from the community. I mean, the public health nurses from the public health office for the first day they were there, but we sent them home the second day, because one of them was sleeping in a room the only room in her house that had a roof on it and every other house, every other room in the house had no roof and no windows or screens and her children and husband were in this building and she was coming to work. So we finally said you go home and take care of your family, we'll take care of the public health - take care of the patients.
But what happened is they all left and we didn't know anything about the community. I couldn't tell you - there was one store an Eckerts drugstore that you could get a prescription filled. I didn't know where the Eckerts was and guess, what no one there knew.
CONNI WELLS: No road signs.
KAREN WIGGINS: No road signs. Finally somebody said, actually, the National Guard guy, the National Guard would come by three times a day and check on us. We finally asked the National Guard can you tell us how to tell people how to get to this Eckerts and he gave us landmarks, was this sign is down and this clock that doesn't work, that kind of stuff, to tell people how to get there. But we really needed someone from the community to be there with us. And so one of the things that needs to be established is identify community leaders to be with the workers that are there, that workers that are there trying to help. Also, you know, there was absolutely no way that we would know what family needs were.
If someone came up to, these were patients or these were clients that public health department knew. They knew those family members when they came in. But we didn't know. So we had no idea what their family needs were. And that's something that a family partner can assist with. They can understand their community. Because between families and response teams, it was just absolutely amazing the amount, the lack of communication between the response team and the community, because we did not know them.
And you know the reality check. What we thought was important might not necessarily have been important for the people that were coming in. We were really into, you know, do you have your prescriptions? - they were taking blood pressures on everybody when they walked up. And in reality what we probably should have been doing was handing them a glass of water. And it was really interesting. We had - we didn't really see many children. The first few days we were seeing only mostly elderly people. But the interesting thing was that they would come and they would sit down and we would give them something to eat and something to drink. And they would sit there and they would sit there and they would sit there.
And the people from the mental health were about, we were in a parking lot. There was no shade, except for this one little half tent. So everybody sat under that half tent because it was 95 degrees outside. And the mental health people were a few, I'd say about 100 yards away. And you kind of had to realize that the reason they were really sitting there was because they needed to talk to somebody. And what we could do the best for them was to give them an opportunity to sit there and say: I've lost my house. I don't know what I'm going to do. These were elderly people. My children are in New Jersey , and I have no one.
And I can only relate it to that because that's all I saw. But I'm sure that what Conni saw was the same thing: Is what am I going to do with my children? How am I going to feed my children? It was kind of the same thing. And so I think that one of the things that people from the community or families that have been in communities, they can think, they can help the professional realize what's real and what's not real.
CONNI WELLS: For example, Ruth, I'm going to put you on the spot. You just had a huge disaster, tornado just blazed right down through the center of your community. There's several people dead.
UNKNOWN SPEAKER: It did.
CONNI WELLS: I'm sorry. I'm sorry. Actually happened. You have several neighbors who are missing, displaced. Their homes are gone. They're going to bring in emergency response team from New Jersey . It's going to be some professional fire and rescue emergency management. FEMA is going to come. There's going to be some nurses coming in, some mental health professionals. What is it that you know about your community that is so unique to just your community they're not going to know?
UNKNOWN SPEAKER: First of all, we're very rural, and finding families that are in the woods because their houses are built really far back, they're on a landslide going down into a creek. They could be in the woods back there. They may not be able to get out of their houses you may not be able to get into the driveways because the trees were down and they were everywhere. So you have to identify where the families are first. Where are you going to find them?
CONNI WELLS: Good. This is just an example of how a community leader could be integral, would that have been helpful?
UNKNOWN SPEAKER: Oh, yes.
CONNI WELLS: Yeah. So what can families do? What can Lizzie do as a youth? What can we do as families? We can develop our own resource materials. I take stuff that she develops all the time and I totally reformat it. I change the words, make it into a family‑friendly handout, take it back to her and say: Am I still saying the same thing and is it okay if we use this? And we just say adapted from. She started taking some of our material and revising it and adapt it from FIFI making in a language that professionals can understand. We can make phone calls. We can make phone calls as we're waiting for something to happen or after something happens. Most of us have cell phones. We can make phone calls and get lists of people that should be called and told anything. We can advocate for programs.
Right now the entire program in the whole nation of the United States is being threatened, because it's not made a significant impact. Tell that to my families. But we're in a position, it's going to be a lot easier for me to go to a legislator and fight for emergency medical services for children than it's going to be for someone who works for the federal government or someone who works for state government or who actually has a job. Because the way that a lot of politicians see it is you're just advocating to keep your job. When they hear me talk about it and I'm not getting any money for the program, and I show them pictures of families that have been helped, then I'm actually sharing with them what it is that it's doing for real people, which they've totally missed in their data. We can review policies and look at them. We can participate. I call it para response team members, because they have a thing in Florida called professional response team members and I see us as the paras. We can check the reality of everything and evaluate what happens and offer feedback.
One of the things that you can do after there's a disaster, such as Ruth could do this after the tornado, is send a letter around and do it just like we all like to have the strengths first and then the challenges and the weaknesses after. Say, you know, we notice the following things. We want to commend you. You came in. You helped. It was so wonderful. In the future, we would like you to consider, and we would like to help you actually do that.
Those are some of the things that families can do. This is a cartoon that someone sent me after the third hurricane. It wasn't funny then but it's funny now. Welcome to Florida . We're here.
(Chuckling).
One of the things I want to talk about how did we take these principles I just talked about and how did we actually apply it as an organization? Our organization's called, FIFI, Florida Institute for Family Involvement. No, we don't have a pink poodle, although I have a lot of pink poodles, everyone finds pink poodles and sends them to FIFI and they think it's a joke. Although I like pink poodles. We actually developed our own emergency plan for the organization. We developed formal partnerships for preparation and response. We have family members who work for us. We have 12 family health partners that work in communities around the state, and then we developed a disaster follow‑up and recovery process. Our emergency plan, we have a state and community plan with security, because we're a family organization and families call us. We have HIPAA‑protected information in our office that we have to protect during any kind of disaster. And we've built that into our disaster plan. We had to figure out how are we going to provide ongoing support for families where our organization is located at. We were very vulnerable as well.
We had to have some clarity in terms of closure, if we're going to close our office, if we're actually going to have to shut down, how do we know when we're going to do that? I didn't want to just like wait until the trees were blown and say, okay, you guys better head home. We wanted to do this ahead of time and actually come up with a process. And then we wanted to be able to notify our funders. For a couple different reasons. Number one, I wanted them to know that we were going to continue doing business up until this point. And then I wanted to let them know when we would be restarting business after that. So we had an actual four, 5‑page emergency plan we developed just for our organization. Very few family organizations have developed an emergency plan, and I think it's really important, even if there's only one person in your family organization office. One of the things that this does is it - I mean why should we go out and tell - why should I go to your house and tell you to develop a disaster plan when I don't even have one for my organization?
We had developed a policy to guide the office staff and contractors on operational procedures during periods and emergencies and disasters. See where that star is at just below Tallahassee , that's where our office is located. So you can see why we felt that we were very vulnerable at least to hurricanes. Our office is also surrounded by a wildlife refuge. And it catches on fire every now and then. Well, actually what they do is they set it on fire to do a burn and it gets out of control. And so they get out of control very often and so we've been threatened by fires. So we came up with policy, procedures and processes. Our experience in the preparation and response, we participate in all the state level emergency operation center calls. These were the calls that 48 hours before the hurricane was going to hit the Governor convened calls with all the emergency managers around the state. We were invited to participate in those phone calls as members. So every day at 11:00 there would be a phone number we would all call into. And at first the Governor orchestrated the calls and then he turned it over to the Secretary of Health who then got really old, again they were like me the first hurricane was exciting. By the last hurricane, his administrative director was doing it.
So what they would do is they would go around all the counties, emergency management director from Miami‑Dade would say this is what's happening here. These are the shelters we have open. These are the beds we have open. This is our special shelter. These are the routes that people can take. These are the roads that are closed. And we participated in listening to those calls. Why was that important? That was important because we had an 800 number that people were calling all the time. I have a child with special needs. I don't want to take them, you know, to the shelter over here. I want to know if there's a different shelter. I had a bad experience last time. We can give them an idea of where there's beds at. Who the contact people are. What roads they can take and so on.
And then we participated in children's medical services, children with special healthcare needs daily calls. So we were doing two calls a day. And we would participate in those as well, listening to what they were saying, talking about different families. On those calls we actually spoke about what we were doing. Where our family health partners were and what we were capable of doing.
One of the things that we did when the first hurricane was hitting down in Charlotte county, we knew it was going to come in down there, we had them fax us hundreds of names of families of kids with special healthcare needs. We sat at the phone 24 hours a day for two days calling these families up and saying, you know, I know you have a child with special healthcare needs and I know you probably have a disaster plan and you know the hurricane's heading your way, I would like to know what shelter you're going to. And we would document that and then fax it back so the nurses knew where all of their families were going to be at.
One of the reasons that became very helpful, we ran into a lot of families who said: Oh, we're not going to leave. You know, I've been through a dozen hurricanes before. This is not a big deal. We're not going to leave. And we could say to them, you know, I'm a parent of a kid with special healthcare needs. I know how you feel, life is one big crisis, but you know what this could be the big one and we would try to walk them through it. The last thing we were taught to say, we were trained by the emergency operations office: The last thing we were say to a family when they said, no, we're not going to leave: You understand that you have been advised to leave the area; you do have a child that you know is more vulnerable than other children, and I have to advise you that you could be held legally responsible if anything should happen to your child. And that's the way we would end our phone call. And we documented that that family had decided not to leave.
We had a family in Fort Pierce with a child on a ventilator. They made it through the first hurricane, made it through the second hurricane. And they weren't going to leave for the third hurricane. They weren't going to evacuate. We worked and worked with them. We even sent our family health partner to their house. Child on a ventilator. They had a generator. The generator worked before. It wasn't a problem. The third hurricane, trees go down all over the place. No one can get to their house. Generator goes down. The child died. It was very sad.
We served as coordination and linkages from the state to the community as state leaders, what happened because we were on those phone calls, we were able to connect with the DD Council partners throughout the state. The family Network on Disabilities, care councils places where we had people working with us we could let them know we just found out that in Lee County the health department there is really looking for some volunteers to work with families with kids who have special healthcare needs or we need someone who has an expertise in working with kids with autism. They brought in a response team but no one there has that particular expertise for some reason there's six kids at the shelter with autism can someone go down there? And so we were able to do that as well.
We developed, and all of you have this, even before the AAP developed their emergency information form. FIFI developed an emergency information form, and it was developed by families for families. This isn't intended for physicians to fill out. This is for families to fill out. And we let families tell us exactly what it is they thought they needed to have in it. And then we gave it to the emergency medical services for children's advisory committee and they went through it and looked at it and tweaked it a little bit and gave us some ideas of things they could use. So we had built a partnership with Karen's office, and they paid to have this formatted and printed. And how many have you given out?
UNKNOWN SPEAKER: I would say 18,000.
CONNI WELLS: 18,000. One of the other things that we did is we started showing up at things where families traditionally gather, whether it's a Little League game or a community fair, and we use this with all of our family leaders. We would - this happens to be a statewide conference that we went to. We set up a little swimming pool with rubber ducks in it and we put numbers on the ducks and we get candy. And little cheap prizes, and for free we have kids come and pick a duck. We had one kid who wouldn't leave without the duck.
(Laughter)
But we have them pick up a duck. And the whole time that we're doing this with the family we're saying to the parents, oh, this is so much fun, do you guys have a disaster plan? You know and whereabouts do you live. My gosh, which shelter would you go to? We quizzed families and prompt them to start thinking. And at that particular conference Karen also had a booth right around the corner. So what we would say is you know what, you need to go talk to Karen and she's going to help you get the information you have to have so you can be prepared.
But we started doing that every place that we went. And it was really cheap but it was a to get us to connect with families while their kids were having a little bit of fun.
Our family health partners, our subcontractors for the Florida Institute for Family Involvement the any one time we have 15 of them. We hire them, supervise them, we pay them, train them and do their evaluation and they're strategically located throughout the state.
They were instrumental in helping us recognize and understand the variances between communities. As we would have conference calls with them and talk with them about what was going on, they would be able to say things to us like: You know, this family is stuck back here. But this dad is a real nervous dad, and he has a gun. And you know it's just one of those communities where there's some militant people. It doesn't mean that the kids don't need help. It doesn't mean that this family doesn't need groceries and water. But it does mean that someone is going to have to be careful. And it's going to have to be someone that this man trusts that's going to go in there. They could tell us things like that. It was amazing.
When we responded, we didn't go to - initially when we went we got money and we went to Wal-Mart and bought all kinds of supplies that we thought families might need. One of the best investments that we made was buying fruit cups, the kind you don't have to refrigerate. And charcoal and extension cords. We headed out in pickup trucks. We did not wear uniforms or our FIFI shirts, we wore regular clothes so we looked like regular people. Because we found people in the communities who may have been migrants or who did not speak English were very nervous and afraid of people in uniforms. They were not going into town to get in line to walk past soldiers and sign their name in order to get a jug of water. They were drinking water out of the driveway. And they were very frightened people.
What we did was we went to the extension office and we said, can you find us a leader in this community who would be willing to take us in? And so we found a woman who used to serve as a secretary there. We tracked her down and talked to her. She said my husband says he's going to have to meet you first and determine whether you could come into the community. We met on the road and he talked with us. He didn't really say too much. She said most everything. And he decided that we would be safe to go into the community.
So they took us into the community and the adults did not come for anything at first, just children did. And they lined up behind us. And what they all wanted were fruit cups for their little brothers and sisters who were hungry. This was two days after the hurricane. And these families had not had fresh water or food yet. And they were wanting these fruit cups. And as we talked with them we would say things to them like: Does your daddy cook outside on a grill? Uh‑huh. Do you think that you have any meat that's good in the house? Uh‑huh but we don't have a way to cook it. We have charcoal, do you want to take it to your daddy or do you want your daddy to come over here and get it. I'll go get my daddy.
Pretty soon they were bringing their parents over. Then we had clothes we were giving them. Towels. We gave away a lot of towels. Not new towels but used but we found out what it was they needed and got it. We didn't decide that's what they needed. We took it from them. If they didn't have something they needed we went and got it and brought it back in. We couldn't have done that without that community leadership. You can't do that. We had one family that we found who had been hiding in a closet for five days.
They didn't speak any English, when the first hurricane came through, it was aired in Spanish that the hurricane was coming, but it was aired in Spanish on an English station. The Spanish stations were all prerecorded. You know you purchase them. You purchase eight hours of prerecorded, you know, Spanish‑speaking. And so they weren't getting the types of things that the other people were.
We had a family that lived in the middle of an orange grove. They were not documented citizens. And it was a man, a woman and their three kids, and they were hiding in the closet when the hurricane hit. He was very scared and he told his family he thought it was a storm but he wasn't sure, because one time he had been to a movie theater and saw that there was a bomb that hit and it caused something that looked like a storm. So he wasn't sure if this was a terrorist act that had caused this, maybe a bomb. He told his family maybe a bomb hit Tampa or if this was a storm. So they would hide in the closet.
A day after the storm hits, he hears something outside so he crawls out of the debris of this house and he looks outside and what do you think he sees? Soldiers with guns. He told his family that terrorists had blown up part of Florida and that they were probably all going to be killed. And that they needed to stay hiding in the closet and hold out as long as possible. Those are the kinds of things that only people who can get into the community can find out about. Those are the most vulnerable people.
This little boy right here told us, we asked if his family needed anything, and he said he thought his daddy might need a doctor, because when the wind blew, it blew a nail into his daddy's neck and that the bleeding had stopped and that the nail wasn't there anymore. But he thought maybe his daddy might need a doctor. And his daddy had gone into town with somebody else but there were soldiers and they wanted him to fill out papers and he didn't have the right kinds of papers to show them, even though they weren't asking for any documentation, people were still worried about it. So we were able to help get them care.
Lost a lot of wheelchairs. Wheelchairs were damaged because people weren't sitting in their wheelchair when the storm hit and they didn't take the wheelchair with them because it took up space. And so a lot of wheelchairs were damaged. Those wheelchairs that weren't damaged got taken to the shelters and what they would do is they would take, like we would take Lizzie out of her wheelchair and maybe she would be resting with you or playing a card game or something, and someone would see her wheelchair and they have another kid coming in who doesn't have a wheelchair, they would grab Lizzie's wheelchair without asking Lizzie. Next thing you know Lizzie's wheelchair is gone.
Our family health partners had to be specifically trained and know how to develop resources. We did predictable and regular phone calls. What we did is our family health partners, all 12 of them, I called them every day as we're moving towards the hurricane starting to hit. And we went all around the state. We would get them on the phone as a conference call and I would start out with Jessica who is down in Marathon down in Key West . I would say Jessica: How are you doing? She would say I'm doing okay. I'm going to go ahead and evacuate in the morning. This is my cell phone number. This is where I'm going. Then I would move to Frank who lives in Miami . I would say what are you doing? He said Jessica is coming to my house. But they helped each other out like that. I knew where everybody was at all of the time.
What it was, we got up to Fort Lauderdale and Renee said I'm going to the special needs shelter. The one on 14th Avenue ? She said yes. I said good, because they have six kids there already and their parents and a couple of the parents are having a hard time because this is the second hurricane and they've already lost part of their house and they're afraid of losing the rest and they really need some parent‑to‑parent support there; how long before you can get there. We did those kinds of things.
By the fourth hurricane, when we did these conference calls, there was a lot of crying. You know, you'd get to Jessica and I'd say how are things going and all you would hear is her crying and saying Conni I can't do it again. I just don't think I can do it again. So we were able to really - so then we started having a mental health professional actually sit on the phone calls with us and try to keep these people pumped up so they could do their job.
We had them check in. They had to check in with us 12 hours after the eye of the storm had passed them. We asked them to check in any way they could. Borrow a cell phone if yours doesn't work. Have someone at the health department call our office and let us know that you're okay. And developed those community linkages. Then they worked in the shelters they did recovery follow‑up. We learned how to fill out the FEMA papers and how to apply for housing and all of those kinds of things.
Here's one of the areas that we went into after the storm. And this is where community partners, this is the way - you think of shelters, this is the way most of our shelters looked, as Karen was saying. It's nothing more than a half a tent. There was water damage to this big church building and it was not considered secure. They were afraid that it would fall. So people weren't inside the building at all. Everybody was outside. This was actually a Baptist church group that came from Ohio to help.
In terms of recovery, the supplies and resources that we took into the community, I'm going to - I don't want to embarrass anybody but I'll tell you something that was in big demand. And that's feminine products. Sanitary napkins. Because you don't want to go up to a soldier and say: I need some pads (whispering) and so what we did we had a whole truckload of them, and word got out that people in the red truck had sanitary napkins and we had a lot of kids coming up to us saying my mom said you have something for her.
(Laughter)
And we would give it to them. And that's something that we don't often think about. But you know the fruit cups, we don't often think of some of these little things that are important. We had to do a lot of homeless follow‑up because families were homeless and trying to find them and figure out how to give them ongoing support. We did recovery projects. People gave us some money, donated money. We let our community leaders pick a project they wanted to do. And that project might be getting teddy bears and dressing them up and giving them to kids who are stuck in shelters five and six weeks later or going to the hospital and setting up a fund where they had McDonald's gift certificates for families so they could go out and have a nice meal. We did things like that.
We did debriefing with state and community partners. This is critically important, one of the most important things we could do was go back to the state and say it worked well up until. Or, you know, the whole thing of having to - the only way you can get into a shelter is by filling out that piece of paper as you're coming in the door. We need to let some of these families take those papers home and fill them out, because we had a lot of families who couldn't read and write. And just because you can't read and write or just because you don't have a green card you can't come into safety during the middle of a storm. That wasn't the intent. It's just that they had policies and procedures set up that didn't always consider the cultural needs of the people that were being served.
I was really impressed by the fourth hurricane where we had the debriefing calls as the storm was coming and we had the emergency operations calls, this is really neat. We had an outbreak of was it typhoid in Highlands County or hepatitis. We had an outbreak of hepatitis, that's what it was. And they didn't have enough vaccine because the Department of Health roof had blown off and everything collapsed. So they were in a tent outside an emergency room and they had already identified some hepatitis, and they needed to inoculate masses of people. And there was a lot of water.
And as they're going around the state, Dr. Aguinoba, Secretary of Health, gets to Highland County , yes, we had this outbreak. This is the situation here. Next thing you know, Lee County , which is 150 miles away, said: We've got serum. I've got two nurses. We're getting in the car now. What road do we take. And then someone from the county in between says we're going to have our emergency crews meet you at the county line and bring you across our county because most of our roads are closed. So it was that kind of coordination that occurred that I thought was just incredible and made me feel good as an individual.
Here's another picture of one of the roads. This is the way that most people found their neighborhoods a week later. These are some of the families that we helped, some of the kids we helped out in the hills. You'll see they have some of the goodies we gave them. When they say Emergency Medical Services for Children is not making a significant impact, I beg to differ.
I would not have known how to get into those communities. I would not have known who to talk to. I would not have known how to handle myself in an emergency situation. I would have not been on the emergency calls and knew that this family's and this community existed. So tell these kids that emergency medical services is not making a significant impact.
Karen, did you want to say anything more about the way that we partnered and worked together and -
KAREN WIGGINS: Put me on the spot. No, I think that we learned a lot. And actually I think that if it happens again next year, which they're predicting we're going to get hit again next year, I love Dr. Gray out there and where is he in Colorado ? , yes we love that man. But I think if it happens next year or the next time it does happen, I think that we'll be able to take a lot of these lessons and put them to work. I think that we'll probably learn more. And we're more than willing to share anything that we've done with anyone here if you would just like to contact us we'd be glad to help you out in any way we can.
CONNI WELLS: Are there any questions?
UNKNOWN SPEAKER: Conni, I wanted to make a comment. You were talking about (inaudible) supplies. I read an article about Wal-Mart and they keep data on everything that is ever purchased at a Wal-Mart and the time of day purchased. They tracked during and after a hurricane and what would you think the two items that they just shipped in truckloads down there that people would want? I would think it would be water, wouldn't you? Number one, beer and number two strawberry pop tarts.
CONNI WELLS: Strawberry pop tarts.
(Laughter)
Strawberry pop tarts, there you have it. But it does make sense. It does make sense. Everybody is working really hard, and you know the strawberry pop tarts are great for the kids.
UNKNOWN SPEAKER: I had a question for you all. There's probably hundreds of websites out there and everybody has their list based on the model of what's essential in a disaster. We went out and purchased one of those and I wouldn't guess some of the families in our states know that. Is there a minimum list we can all create one, but a minimum list that we can all say this is core essential? We need to get (inaudible) what every one of the PMA websites I've looked at, county state and across (inaudible).
CONNI WELLS: That's -
UNKNOWN SPEAKER: (Inaudible).
CONNI WELLS: Excellent. The question is is there something that's the minimum because most families if you look at the evacuation or the disaster packing checklist, it does cost you a small fortune in order to put everything together. And that's a really good point. The one that we have on our website is for families of kids with special healthcare needs. You're right, there's a lot of things on there that families may have to go out and purchase but I think most of our stuff are things - we tried to look at what was on someone else's list that you would purchase and find what we had in the house that families could already use. It's just a matter of getting it all in one spot.
But that's a real good point. That might be what you would want to think about, what's essential, a grab and go. What's going to be in your grab and go kit? And how can we do that in a way that's not expensive. That right there is another way for us to get civic organizations and other people who want to donate involved ahead of disasters, putting together kits and handing them out at a health fair, something like that. That's a really good point.
UNKNOWN SPEAKER: I wondered: Did you have any contact from any other communities in other states and ask them how was it when you came, what did you find, how could we improve it?
CONNI WELLS: We talked with a lot of them. First of all, a lot of our contact initially was very emotional. For two weeks after the last hurricane I was still running into power line people at convenience stores who were leaving the state after having been down there for six weeks, and every time I saw them I'd start bawling. I would just thank them over and over again.
But the people from out of state that came in that we talked with down in the Hardy County area told us that they were amazed, number one, how organized it was. And counties were assigned nonaffected county facilitators. So Hardy county that we went in where these kids are from was, their facility was Broward County , Fort Lauderdale , the sheriff's department moved in and they coordinated all of the out‑of‑state people.
We stopped at all the churches where a lot of the out‑of‑state people that were helping were actually located at church buildings. We stopped there and connected with them. But in trying to help them realize these are the community leaders. We would say to the people from Ohio : Okay, this is Brandy. She lives in this community and she's going to stop by here once a day and see if you guys need anything, if you need to know anything and so on. So we did do that.
KAREN WIGGINS: And you know I'm a skeptic in a lot of ways, and I was really skeptical of some of the national organizations and what they really do with their money. But there were a couple of organizations that now I give money to because I saw what they did in the hurricane. And you know it's not - and some of them are very organized. You see when they come into a community and they're there 48 hours or 24 hours after the event happens, and they basically go to a corner and they set up a store. And there were - everything that a family could need, if they could get to that corner, they could get anything and everything they needed.
They had ice. They had Pampers, baby food. They had, you know, supplies for the families. They had clothes. And they brought in tractor trailers, and that's how organized they were. And so there are some of those organizations out there. Of course, we were in one location. I don't know that they got everywhere. But one of the things I became a believer of and put my money there is the now I'll support some of these organizations because I saw what they did and how organized they were.
And they were bringing in volunteers from other states. A lot of them were church people. They were church groups that were working with these volunteer organizations. But it was well needed and necessary. And it was impressive. And we couldn't have gotten there you those eight weeks without the rest of the country. So there's probably people in this room that helped us out that they may not even know they helped us.
CONNI WELLS: Somebody from a church in Ohio actually saved my family with a particular kind of pacifier, because my daughter was - that road flooded and you know we were down there and she was helping out with some of the efforts, and we lost Blaine 's pacifier. And Blaine has special needs and he has autism and he needs a pacifier. There weren't any stores opened. And lo and behold we went to this one church and they had a whole bin full of every kind of pacifier you can imagine. And we found his pacifier.
Any other questions before -
UNKNOWN SPEAKER: You used to have a SORT program - (inaudible).
CONNI WELLS: It's very interesting that you say that, because one of the grants that we've written actually integrates family leaders in communities into that training. I think it's an excellent way for us to start really building the expertise of these people that I call the reality checks in communities to have them specifically trained so that they can work side by side and that they know, they at least philosophically know what they're doing and they have a foundation and knowledge so they can work in parallel with one another. Yes. I think it's a great idea.
Thank you very much, and for all of you who helped us during the storms, I thank you.
(Applause)