Military Benefits are 'Lifeline' for Parents of Special-Needs Kids
By Army National Guard Capt. Kyle Key
Life in the military can be stressful, especially if you’re married and raising dependents with special needs. For single service members, the challenge to care for special-needs children and manage military careers can be harrowing, but not impossible.
Although far from perfect, the military provides benefits and programs usually unmatched and unaffordable in the private sector.
For that reason alone, many service members choose to stay in the military as long as they can in order to continue to provide the best care for their dependents with special needs. In addition to TRICARE, the military has a network of professionals to help lighten the load so service members can stay focused, and the Exceptional Family Member Program serves military families in all branches with qualifying special needs.
Though families face any number of special medical or educational needs, the fastest growing disability in America is autism, according to statistics from the advocacy organization Autism Speaks. It is also inundating enrollment into the EFMP program and TRICARE referrals for various therapies to treat autism. According to Autism Speaks, about 23,000 dependents of service members—one in 67—across all services are affected by autism. In 2013, about 7,800 dependents received autism therapy, according to TRICARE.
Before my sons were diagnosed with autism spectrum disorders (ASD), I had always thought the EFMP program and other benefits were only for dependents with serious physical and mental disabilities. What could the military do to help my family?
Autism is one of those invisible disabilities often mistaken for poor parenting and a failure to provide discipline. The military has been largely supportive, but not everyone understands autism and the extreme pressures it places on military families. Many military families do not know the benefits available to them, so education and awareness are critically important.
Children with ASD may have varying degrees of speech loss, social awkwardness, repetitive behaviors and trouble understanding social cues. They can be overly sensitive to light, noise, touch, smell and taste. When a few or more of these things are combined, an autistic child often experiences sensory overload, creating mayhem.
As one or both of my sons digressed into a thermal meltdown, bystanders have recorded them on their cellphones. Others gave us ugly looks or made nasty remarks. Those who we thought were close friends pulled away. At our most vulnerable, times like those were the loneliest.
After the diagnosis, we started Applied Behavior Analysis therapy (ABA) with a licensed, board certified behavior analyst. ABA therapy is as much for parents and guardians as it is for the child.
With our analyst, I learned how their beautiful minds worked and was taught how to motivate and affect positive changes. It has been the single most successful therapy to help them cope with their world and has helped us manage and incorporate more calm into our lives.
According to the Autism Science Foundation and Autism Speaks, providing ABA therapy is one of the most effective ways to treat an ASD diagnosis. With autism alone, children commonly need speech, physical and occupational therapy in addition to ABA therapy. In our family, there’s hardly a day during the week that we are not going to numerous appointments and therapy. Autism isn’t a condition that will just go away, but if it is diagnosed and treated early, studies show that children’s learning, communication and social skills can greatly improve.
The toll of taking care of dependents with autism can be exhausting, so sometimes parents need a lifeline. Respite Care is a program through each service’s EFMP that provides a break for weary parents. Service members may receive 16 hours of free child care each month and may qualify for additional hours according to the situation. Eligibility is determined by an installation EFMP Respite Care Panel. Like many programs, Respite Care is subject to funding and availability of approved providers in the area.
It’s true that there’s always someone with bigger challenges. Over the past couple of years I have served with Army National Guard Staff Sgt. Tony J. Geving, whose son, Lyam, 5, was diagnosed with ASD in 2011. As a single father with full custody, Geving doesn’t have someone helping him take his son to his appointments during the week or watching him while he works out, runs errands or works. Many service members like him just “soldier up” and make it happen.
Geving received orders for Afghanistan in 2011 and arranged for his son to stay with family. As a skilled planner, he made advance preparations and updated his family care plan. Family readiness is a requirement in the military, especially when dependents are concerned. For parents of special-needs dependents, the plan can be lengthy, extremely detailed and may include legally binding documents.
Many members of the National Guard and Reserves have a strong network of family and friends to help support them during a separation. But troops like Geving who are in the Active Guard Reserve Program don’t always have that kind of support. In an ever-changing landscape at work, the family care plan must be updated on a regular basis and is only good as the information in it.
While I am not separated from my family due to a deployment, my wife and I had to make a difficult decision to keep our family at our last duty station so they can complete the school year. In December, my wife had a medical emergency and we followed our family care plan to take care of the boys while she was in the hospital.
Because no one listed on my care plan was available, I was granted emergency leave and flew home to take care of her and the kids. Had I been deployed or on a mission, however, things could have become much more complicated. I learned a valuable lesson to ensure that my plan was up-to-date and had overlapping layers of support.
For extended separations, military families should try to plan phone calls and video chats at a fairly consistent daily time. Geving rarely missed a day to spend time with Lyam via video conferencing.
“I brought my computer and my camera and I would Skype with him every morning at about 3:30 because it would be about 8:30 at night back home,” Geving said. “It made it difficult, but it was worth it. When I got home, there was no hesitation for him to come right to me.”
During my current assignment, more than 1,000 miles from home, my family and I spend at least an hour every night video chatting. They sit the virtual me down at the dinner table and we talk and laugh as usual.
Later, they cart me to the living room and we usually talk again before bedtime. Children on the autism spectrum thrive when there’s a predictable routine and order.
In June, 2014, Geving and his son moved to the Washington, D.C. area to begin his assignment at the National Guard Bureau. The area is home to some of the best autism resources, services and programs in the country. But according to the Centers for Disease Control, autism cases are growing each year by 10 to 17 percent, increasing the demand and placing a strain on the supply of trained therapists.
The demand in certain areas has created a backlog for services. Geving’s son has been on a wait list since June.
“Before we moved here, they put him at about 6 to 8 months behind where he should be,” said Geving. “Now, they’re saying he’s behind about a year and a half, just in a six-month time frame. He’s regressed that much.”
Still, Geving and other military families are optimistic and know if there’s a will, there’s a way to provide services for their children. ABA therapy is extremely important along with other programs to support military family members. But one thing is for sure, the single most important aspect of a child’s development is the tenacious support, advocacy and commitment of their parents or guardians.
–Captain Kyle Key is a member of the Kentucky Army National Guard and serves on active duty as a public affairs officer with the National Guard Bureau in Arlington, Virginia.
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