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| TITLE SLIDE: Family Issues of Military Connected Children with Special Needs Extended Interview with Judy Palfrey, T. Berry Brazelton Professor of Pediatrics, Harvard Medical School April 14-15 | Natcher Conference Center, National Institutes of Health, Bethesda, Maryland |
Dr. Judy Palfrey: I’m Dr. Judy Palfrey. |
| Camera view of Dr. Judy Palfrey. | Dr. Palfrey: I’m a pediatrician at the Boston Children’s Hospital. |
| (Edit/camera cut) Dr. Palfrey on camera. | Dr. Palfrey: Well, the Boston Children’s Hospital has the mission to provide excellent health care for children and to be sure that we do our job until every child is well. |
| (Edit/camera cut) Dr. Palfrey on camera. | Dr. Palfrey: So, for years, I have been working with children with special health care needs and have been very interested in the way that we provide services—not alone in the health sector, but also in the community. That would be in early intervention schools and so forth. Because we know that children who have special health care needs have a vast variety of issues that their families need to deal with. And we have to provide those through the community resources. So this particular project has to do with military connected families. And obviously, our military service men and women are doing enormous duty for our country in protecting all of us, but oftentimes, they have to be away from their families if they’re deployed, if they’re moving. And we know that children with special health care needs have so many issues that come up on a daily basis, it must be a double burden for families who may be being deployed and serving us in the military. So the questions have come up: Are the families receiving the same kind of supports that they need? And it turns out that the military does wonderful things. They have the exceptional military program and so forth. But what this conference is about is trying to find the gaps, trying to find the things that are maybe not happening in the military, and then also trying to find the services that are going well in the military that the civilians could learn about. So I’m delighted to have been able to be part of this program. |
| (Edit/camera cut) Dr. Palfrey on camera. | Dr. Palfrey: You know, what’s nice about having this program at NICHD is that the focus is on research, it’s on finding out new answers to the questions that we may have. And yes, there are a number of things that I think, even so far in the program, that we’ve been learning about. The military, obviously, has ways in which a family, while they’re in particular base or they’re in one setting, let’s see, they’re training or what not. There are many services there, because it’s already a community. But what happens when that family has to split up? The one member has to be deployed, et cetera, et cetera. So, I think one of the biggest questions that we have coming through this program is, how do you maintain the continuity of services for families who may have a child with special health care needs? And does it make sense for the families who actually want to be making the changes? In other words, for their career moves, it may be important to move from one place to another. So that’s a tension that we’ve kind of heard today. And one of the research questions that’s come up is, could we be using 21st century technologies? Could we be using our communications efforts to allow families to move around, but also have the services that the children desperately need? So that’s one type of question that’s come out. |
| (Edit/camera cut) Dr. Palfrey on camera. | Dr. Palfrey: You know, this last couple of months, I’ve been doing some work in editing a book that we wrote quite some time ago, but it’s very relevant to what we’re doing now. This is a book about the services that children with very complex medical needs need to have in school so that they can go to school safely. It’s just—it’s called Guidelines for Care for School Personnel for Kids Who Are Assisted by Medical Technology. And I was just thinking back—the beginnings of that project. I was known for caring about kids with special health care needs, and caring about schools, and so forth. And one day, I got a phone call, and it was a school superintendent, and he said, “I don’t know what to do. We have this family who’s here. They have a child, and the child has a tracheostomy, she’s got a hole in her neck, and she’s got a gastrostomy. She’s 4 years old, and the family says they want her to come to school. And I’m scared to death, basically. I’ve already had 80 meetings to try and figure out if this kid can/can’t come to school.” And so I said, “Well, I’ll come out, and we’ll talk, and we’ll help.” Well, out of that grew this project called Project School Care. Where people would always sort of home care, but this was school care. So the child—the law of land says the child should be able to go to school. So we worked through and were able to bring that child to school. But out of that came a whole project to develop guidelines for other children to attend school whether they had a tracheostomy or a gastrostomy, whether they were having cancer therapy, whether they were having severe diabetes, whatever. And we’re now in the process of the third edition of that book, and it’s teaching nurses and doctors and so forth—and educators—how kids can just come to school and be part of the community. |
| (Edit/camera cut) Dr. Palfrey on camera. | Dr. Palfrey: Well, you know, we just had this wonderful panel. You’ll probably be talking to some of the parents. There were two things that came out, and I would very much underscore these two things as advice for parents. The first is, ask for help. Never hesitate to ask for help. It makes all the difference in the world. You don’t have to shoulder anything 100 percent yourself. And military folks are, you know, they’re trained to be independent, and they’re trained to take everything on. But when you have a really serious problem with a child with special health care needs, you need everybody: you need grandma, you need your pastor, you need the people in the school to understand, you need friends. So ask for help. It’s there, and people will give it. And then the second thing that again I underscore is, look at the optimistic side. You’ll be told about the dangers, you’ll be told about the risks, you’ll be told about all the things that could go wrong. But have an image of what’s going to go right. And think about the positive sides and the strengths. Because more than—you know, sometimes things don’t go as well as you’d like, but more often than not, the end of the story’s going to be pretty good. So have that image in your mind at all times. |
| (Edit/camera cut) Dr. Palfrey on camera. | Dr. Palfrey: You know, my career has been devoted to walking outside of the clinical arena. And I still feel that’s a really important thing for clinical people to do. Go visit the school. Go walk in the neighborhood. Go talk to people. Because we make a lot of pronouncements about things that should be done, but have no idea what really can be done. So that’s why I think conferences like this are so important, where you’re, you know, mess it up with people that are maybe a little out of your comfort zone. Be questioned about what’s going on. Don’t take everything for granted. But particularly in the realm of kids with special health care needs, so much of it is, what’s their life like? What’s their family life like? What’s their school life like? So for clinicians, I think, spend a little time being curious about what goes on in the community. |
| (Edit/camera cut) Dr. Palfrey on camera. | Dr. Palfrey: You know, everybody’s a little different and got a little special something or another. That’s what makes us fun. That’s what makes life, life. And so, with families who have children with special health care needs, the kids themselves—sure, they’re a little different. But learn about them. Get to know them as human beings, as people. And then fall in love with them, because you’re going to include them, and you’re going to learn their strengths. |
| (Edit/camera cut) Dr. Palfrey on camera. | Dr. Palfrey: Well, I’m very grateful to the NICHD and to the HSC Foundation for putting together this wonderful program. It’s bringing together people from all different aspects of our country. And I think being able to, in any way, support and help our military families is just an honor. So, I’m very, very grateful to be part of this. |
| TITLE SLIDE: Family Issues of Military Connected Children with Special Needs Click here now to Return to the Conference April 14-15 | Natcher Conference Center, National Institutes of Health, Bethesda, Maryland |
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