Conference builds on NICHD initiative to study how deployment affects military families
For 2 days in April 2014, military families, researchers, educational and health care service providers, and other stakeholders came together on the NIH campus to talk about military families. They were participants in a conference on Military-Connected Children with Special Health Care Needs and Their Families.
More than 15% of children in the United States have special health care needs.1 However, less is known about the prevalence of these needs among military-connected children. For this conference, "special health care needs" was defined as having or being at increased risk for a chronic physical, developmental, behavioral, or emotional condition that requires health and related services of a type or amount beyond that required generally.
The conference is one element of an NICHD research initiative focused on how the wars of the last decade have affected military families, explained Dr. Valerie Maholmes, chief of the NICHD's Pediatric Trauma and Critical Illness Branch, part of the Division of Extramural Research.
"Our job as researchers here at the NICHD is to look at what fosters and promotes optimal development for children," Dr. Maholmes said. "The pressures on military families are a different type of challenge for children and families."
At the April conference, speakers explored the educational, psychosocial, and physical health needs of children with special health care needs who have one or more parents in, or formerly in, the military. The attendees shared information and identified gaps in research and needs for expanded services.
In the videos below, some of the conference participants share their perspectives on military-connected children with special health care needs.
Dr. Alan Guttmacher, Director of the NICHD, says that researchers can learn a lot about resilience from studying military children. Many military children grow up in stressful circumstances, with parents who leave for long stretches and are in dangerous situations. "What allows so many children to be able to function very well despite those challenges?" he asks. "What can we learn from that…about resilience in all children?"
Dr. Thomas W. Chapman is the president of the HSC Foundation, which co-sponsored the meeting. The Foundation supports children with special health needs through its specialized homecare service, a specialty hospital, and a care coordination plan. He sees a need for more research on the social and cultural barriers that prevent families from accessing needed health services.
Dr. Beth Ellen Davis, a developmental behavior pediatrician at the University of Washington, directs a program that teaches graduate students in many different disciplines how to take care of children with special health care needs. Based on decades of experience with military families, she has this reminder: Military-connected children are not all the same. They are individuals who can benefit from many different services.
Dr. Judy Palfrey is the T. Berry Brazelton Professor of Pediatrics at Harvard Medical School and a pediatrician at Boston Children's Hospital. She is editing a book for school personnel on how to work with children who are attending school while being assisted by medical technology, such as a tracheostomy tube or respirator. Her advice to parents: "Ask for help. Never hesitate to ask for help."
Myra Rosen Reynoso, is a senior research associate at the Institute for Community Inclusion, University of Massachusetts, Boston, and runs the National Center for Ease of Use of Community-Based Services. She urges health care providers to listen carefully to what families have to say and to enlist a translator if needed. "Parents know the most about their child and want the best for their child…. And one of the most important things about being able to partner with a pediatrician in your child's care is to be able to communicate."
Anissa Davis is a Navy spouse and works for the Department of the Navy in the Personnel Support Detachment. She points out one of the complexities of military life: Having a new primary care doctor every 2 or 3 years. "You find yourself repeating your history, and then your medical record doesn't always follow you wherever you go."
Jeremy Hilton, the 2012 Military Spouse of the Year, has a daughter with a disability. "When you're trying to find information, probably one of the best places to go is to other families who have had a similar experience as you," he says. "They've been in your shoes, they know the resources that exist, and they can probably get you down that path the fastest."
Jessie MacKinnon is the chief operating officer of the National Youth Transitions Center, which is owned by the HSC Foundation. She is also the vice president for programs and partnerships for the HSC Foundation. Youth with disabilities are more likely to drop out of high school, live in poverty, and get involved with the justice system, MacKinnon says.
Dr. Mary M. Keller is the president and chief executive officer of the Military Child Education Coalition . The Coalition serves youth up to age 23 who have parents in the active duty forces, the National Guard or military reserves, or who are post-9/11 veterans. Dr. Keller sees a need for better coordination among health care providers, educators, and other specialists who provide services to children with special needs: "The more we can synchronize services...the more likely we are to hit the right note with that family on what they need."
For more information about NICHD research and activities, select one of the following links:
- NICHD Resources
- Pediatric Trauma and Critical Illness Branch
- Inside the NICHD Interview: Dr. Valerie Maholmes: Exploring the power of the parent–child bond
- Military-Connected Children with Special Health Care Needs and Their Families
- Related A-Z Topics:
- Previous NICHD Spotlights:
- Pediatric Trauma and Critical Illness Branch
- Other Resources
Originally Posted: December 2, 2014
- U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. (2013). The National Survey of Children with Special Health Care Needs Chartbook 2009–2010. Rockville, Maryland: U.S. Department of Health and Human Services.