Special-needs Families Offer Insight on Challenges

 Military families with special needs would benefit from better consistency in services, more effective communication and improved health care education.

A group of specially selected family members offered up these suggestions for countering ongoing challenges during an exceptional family member panel held last week at the Defense Department's office of community support for military families with special needs here.

The panel was composed of 10 families with special needs -- from children with educational or physical challenges to adults with medical problems -- with representation from all services, as well as the active duty and reserve components.

The panel's aim was to help DOD officials "get a pulse" on the challenges special-needs military families face, said Rebecca Posante, deputy director of the office of community support for military families with special needs, which oversees the department's Exceptional Family Member Program.

"We want to make sure what we think are the issues are what the families think are the issues," she said, "and see if we're going in the right direction."

Panel members spotlighted three key areas of concern: consistency, communication and health care, Posante said.

Across the board, panel members raised issues about the consistency of special-needs services across the branches and between the active duty and reserve components. For example, if a Navy member goes to an Army facility, that member should expect to receive the same quality and similar types of services, Posante said. And, people should get the same support regardless of activation status or uniform, she added.

Family members wanted to know, "Why do we get this when we're here, but not in another place?" Posante said.

Panel member Debora Childs, wife of Navy Chief Petty Officer Louis Childs, said she was pleased this issue was brought to the table. The couple has five children, three of whom are enrolled in the Exceptional Family Member Program. Their 11-year-old daughter, Desiree, was diagnosed with sickle cell anemia at birth and has asthma, and their two adopted sons, 14-year-old Jordan and 10-year-old Scottie, have issues ranging from learning disabilities to autism.

The 17-year Navy spouse said she hopes the department can find a way to make the program universal across the branches to "make sure the language is the same, the application process is the same and the services are the same" for all. That way, she said, if she's living near an Air Force base, she can be assured the experts there will know what types of services she's supposed to receive regardless of her service affiliation.

These consistency issues, Childs noted, can be compounded when moving. Parents want to ensure important services aren't interrupted during transition, she said.

Fellow panel member Army Maj. Charlotte Emery, mother of twin boys and a military lawyer at Fort Belvoir, Va., said she'd like to see better consistency regarding respite care for children. Her 2-year-old sons both are enrolled in the Exceptional Family Member Program. One was diagnosed with autism at 18 months and his brother with developmental delays for speech, language and socio-emotional behavior.

Emery said she relies on respite child care for a break from her full-time job and parenting of the twins and her older daughter. Just a few hours for a run or a nap can carry her through the tough days when the boys are running around nonstop, she said. However, the ease of getting a few hours of child care varies from service to service.

"It's disconcerting, when you see such a difference between service branches, especially when we're in such a joint environment," she said.

Military families with special-needs families all start the same process with the same form, she said, and "everything that flows from that form should mirror."

Communication is another point of concern, Posante noted. It's an ongoing challenge to ensure the right information is getting to the right people in a timely manner. Her office, she pointed out, already is working this issue. They just launched a mobile website, she explained, that can be accessed via smartphone with the simple swipe of a barcode.

The site offers a program overview, links to service program sites and features an Exceptional Family Member Program contact locator. "We're hoping this will open up the program to a lot of younger people," she said.

Posante said military families who aren't near an installation, including those of the National Guard and reserves, can call a Military OneSource consultant for support and to discuss special-needs concerns. Families can receive 12 free consultations per year by calling 1-800-342-9647 or by visiting the Military OneSource website.

On the topic of health care, families discussed the need for better education regarding benefits, Posante said. Panel members suggested TRICARE develop an online health care course that describes benefits for special-needs families clearly and in detail. An online course, she noted, is "very doable."

Other health care issues, Posante explained, center on Extended Care Health Option, or ECHO, a supplemental program to the TRICARE basic program that offers financial assistance for a certain set of services and supplies for eligible active duty family members.

The panel also discussed fiscal constraints and how the current austere budget environment would affect the program, Emery noted.

"Much of the time, we were talking more policy -- how to do more with less," she said. "What should we do to optimize successes for everyone? What can we do that wouldn't be cost-added, but effective?"

Emery said the family members tried to give personal examples, but veered away from keeping the topics too personal, trying to make sure they addressed the big-picture issues that affected the most people possible.

It was encouraging to note that "much of what we discussed, they are already working on or had conceived of," Emery said of Posante's office. "We were validating where they're already headed. That's the telling point. We weren't that far apart."

Officials will use the panel's feedback and suggestions in an after-action report, which will help them devise an approach to tackling these issues, Posante said. Some of the suggestions, such as TRICARE online training, can be implemented quickly, while other ideas will call for a longer haul, she added.

Either way, the plan is to bring the same family members back in six months to evaluate progress and offer suggestions for the future, she said.

"I walked away feeling like we had a real partnership with the families," Posante said, noting her gratitude for the families' participation. "A lot of what we're doing, we're right on track, but a few things we might need to put a new focus on."

Childs said she was grateful for the experience.

"I feel extremely hopeful," she said. "The people who put this together really valued and sought our opinion. They encouraged us to be frank, and reassured us that they will take the suggestions and will apply them to the program appropriately, accordingly, and the program will be better than it is today."

By Elaine Sanchez
American Forces Press Service