Boosting Support to Special-needs Families

By Elaine Sanchez, AFPS
From www.defense.gov 

WASHINGTON, D.C. – Military families with special-needs members would benefit from better communication and education, members of an exceptional family member panel concluded.

“We’re working some great programs up at the [office of the secretary of defense] level,” Charles E. Milam, principal director for military community and family policy, said in an interview following the panel here. “I think the key is how do we take that information and deliver down to the very lowest level.”

The panel, chaired by Milam, was composed of nearly a dozen military family members 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 first met in the fall to cite ongoing challenges. At the time, they pointed to three key areas of concern: communication, consistency of programs across the services, and health care. This follow-on panel was intended to track progress in each area and offer information on available resources, officials said.

Communication is key to aiding military families with special needs, said Milam, noting this issue is a personal one for him. His wife is active-duty Air Force and they have a special-needs child.

“What I find when I go out to installations and I speak to families and our service members, they’re not aware of some of the things we’re doing,” he said. “We need to make these processes as easy as possible for these families.”

A one-stop source of information would be a step in the right direction, noted 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. Officials would like to use the Defense Department’s Military OneSource website for that purpose, she explained.

But first, they must ensure they’re providing the most relevant and accessible information, she said.

Posante said she handed out a list of key words to panel members to see if they match up with how families search for online information. For example, families are more apt to use the term “moving” rather than “relocation” when seeking resources. Officials will use this feedback to build content for the site, she added.

Having readily available information is vital for families seeking answers, she noted. “We want to educate families on: Where do you go when you need something done?” she said. “Where do you go if you don’t think you’re getting the correct answer?”

Posante cited progress her office already is making on this front. They’ve created a new information kit on the Exceptional Family Member Program that’s been sent militarywide, she said, and also have sent books and videos on special needs to all installation libraries and family centers. They’re launching online modules to aid families with special-needs children and adults, and to explain how EFMP works, she added.

Families also are concerned with the consistency of programs and resources across the department, Posante noted. She meets with service representatives quarterly to tackle this issue and will continue to push for progress, she said.

Across the board, panel members raised issues about health care, such as being able to see a specialist in a timely manner at a new duty station, Posante said.

Her office is working with health affairs, she said, to address as many of these issues as possible. Posante noted the presence of Dr. Jack Smith, director of clinical and program policy integration for health affairs, who attended the panel to provide information and address concerns.

“We really want to approach how we can answer their questions on medical care and help communicate to the families when there are answers already,” she said. “People at the highest levels are really listening and trying to figure out what these issues are and how to address them.”

Panel member Army Maj. Charlotte Emery, mother of twin boys and a military lawyer at Fort Belvoir, Va., cited the importance of “knowing the system.” Her 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.

“Many of us today were learning stuff for the first time about things that have been in the system, especially in regard to TRICARE,” she said, referring to the military’s health care program.

Military families often are hesitant to “rock the boat,” she noted, which can result in unnecessary out-of-pocket expenses. However, there are people they can go to for information or better answers, she explained. Emery said she plans to take the information from these panels and disseminate it to other families.

This information sharing is one of the key purposes of the panel, Posante said. With that in mind, these panels will be ongoing, she added, and she’s also forming smaller working groups to tackle specific issues.

The department will continue to “chisel away” at these issues, Milam said. Officials are engaged with Congress, and also are looking at policies to discern which ones work and which need to be deleted or refined, he added.

“We’re writing a book one chapter at a time,” he said, noting there’s been considerable progress in recent years.

“Just listening to some of the concerns from the different services and from the different families, just speaks volumes to what we had before,” Milam said. “The fact that we are listening to them through this panel as they represent families from all over the services is very important.”

Milam said he hopes this panel and future efforts send a clear message to families with special needs.

“We care, the department cares, [and] Congress cares about these programs,” he said.

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  • lkatrin

    Why put all the EFMP information on Military One Source vs. a domain name that simply says EFMP.gov/org/com/mil…. all of which I just googled and saw no websites.  If I were a newly diagnosed family trying to find information on the EFMP services available across the board, then that would be the first thing I would look for.  You could put all the information on either of those sites, with redirecting links to the site you want people to ultimately go to.  

    The other suggestion I have would be to have all the seminars that are offered become webinars, taped and archived so that I could access any presentation from any installation at any time from the comfort of my own home.  If you qualify for EFMP and really need the information they offer, chances are that you are already run ragged with appointments and therapies for your child.  Trying to juggle child care for your SN child and their appointments to add something that will be informative but is not medically necessary is a hard choice to make.  With 7 therapies a week, not including doctor appointments, there have been many times when her therapies or schedule prevented me from going to a presentation and I missed out on valuable information.  Kim Preston of ProParents South Carolina is a presenter on Wright’s Law and other similar laws that should not be missed… although I miss it on a regular basis.  Would love to see accessibility from my computer by signing in with my Marine’s last four.  Parent education is key.