Falling through the cracks: Military families say their special-needs children are especially vulnerable
By Dianna Cahn, Stars and Stripes
When Navy Capt. Cassidy Norman was assigned executive officer of the aircraft carrier USS Harry S. Truman, he and his wife, Michelle, were relieved. His career path was taking them back to Virginia Beach — where they’d lived before and knew to be a good fit for their severely disabled daughter.
The Normans were the quintessential military officer family. Cass served in combat and climbed the ranks paying his dues. He and Michelle had learned to balance the demands of family and a military that would take him away from home for months. Even their daughter Marisa’s needs were being managed.
But the leadership had changed at Marisa’s school since they’d last been there, and with Cass away training, Michelle struggled alone against school officials to create an education plan that the Normans believed would give Marisa the tools she needed to learn. They believed the school minimized Marisa’s significant disabilities and declared her fine when she was flailing — assertions a hearing officer later substantiated.
When he was home, Cass would call in or ditch his uniform to attend meetings as often as he could, not wanting to use his office inappropriately. But they soon concluded that they were in a battle — with their daughter’s future hanging in the balance.
The situation surprised them. They believed that public educators would want to work with them, but instead it seemed they were digging in their heels. Virginia Beach is a city whose economy is inextricably tied to the largest Navy hub in the world and, with exceptional medical and military services, it is considered one of the premier locations for families with special-needs children.
The school district serves 10,000 children with disabilities, boasting of “the best transition programs in the country” for military kids and enjoying hundreds of thousands of dollars in grants to educate its military-connected students.
The Normans believed that system was failing their child, but when it came to fighting it, the Navy could only offer them educational materials and quietly advise them on Marisa’s rights to a “free and appropriate public education.”
“It was stressful — more stressful than me being in combat, going to nuclear propulsion school or being away from the family,” Cass said.
“And that was just on his side,” Michelle said.
The strain of having a special needs child is hard on families, but it’s particularly tough when families move a lot and must navigate a new school and the complexities of special education law in a new state every few years — the norm for military families.
Add to that the difficulties of one spouse being away frequently for their job — and often trying not to make waves because it could detract from his or her career — and military families can get pulled to breaking point.
“The strain on marriages is particularly intense,” said Suzanne Vogel, who, after raising a special-needs child in the SEAL community, co-founded the charity SEALkids Inc. that offers free tutoring, advocacy and therapies to children of Navy SEALS who are struggling in school.
“It’s extraordinary circumstances for sustained periods,” she said. “There has got to be a better solution when someone fails a child.”
The Exceptional Family Member Program — the main program for special needs families — offers tools for military families caring for a disabled relative to help navigate new locales and the medical and educational services available, and to better understand special-education law. Each branch runs its EFMP differently and offers varied levels of support.
The Marine Corps, for example, has two special-education lawyers for its force.
But most parents who must fight the school system are often on their own, something families say needs to change.
The Normans had to hire an advocate to come to meetings and serve as their guide to the intricacies of the laws governing special education.
They had the means to pay or borrow money to put their daughter in a private school where she had to repeat fifth grade but is now flourishing, and to hire a special-education lawyer when they concluded it was the only way to force the district to do what they believed was the right thing.
It wasn’t lost on them that they were the lucky ones. If the executive officer of an aircraft carrier can fall through the cracks — anyone could.
“A lot of families can’t fight this fight at all because they don’t have the resources,” Cass said. “I have a leadership role in the Navy as an officer. I certainly feel obliged to help out others who may not have had the opportunity I’ve had — who might not get what they need.”
Special education falls under the federal Individuals with Disabilities Education Act, but compliance falls to schools in local districts, overseen by the state. Each state, meanwhile, applies IDEA differently, placing not only special-education students but their parents on a steep learning trajectory.
Parents of more severe special-needs children arrive in a school district with an individualized education program, or IEP, for their child negotiated at their old school.
It’s detailed and lays out the tools the student needs to learn. But under the law, a new school in a new state can re-evaluate the student, leaving the parents to renegotiate their child’s education.
For military families with children with special needs, that challenge gets repeated every few years.
“That’s our lives, moving from school district to school district, and you never know,” said Jeremy Hilton, a former Navy officer who has moved five times with his family for his wife’s Air Force career despite their daughter Kate’s disabilities.
Hilton took on an Alabama school district that was denying the services his daughter received in her prior school. He spoke with two special-education lawyers. One wanted a huge retainer. The other told him not to waste his time and money. Spend it instead on extra therapies for your child, he told Hilton.
In some states, delays in starting the process of evaluation and meetings can mean the child falls behind.
If a family wants to file due process, it must reckon with the time that would take, said Kassandra Levay, a professional advocate for special-needs families in San Antonio.
“Most families are not in place long enough to file due process and be there for a resolution,” she said.
When her Air Force husband deployed shortly after their family moved to a new station — one of four moves in six years — Sarah Davis was left to navigate with their five kids, four of whom have special needs. Davis has lupus and kidney disease, but when she said she asked the EFMP for respite help on days when she was ill, they suggested she reach out to the community or neighbors she didn’t yet know.
Instead, she let the kids play in the basement to make sure they wouldn’t wander off and laid on the stairs throwing up in a bucket.
“I really think the military could play a larger role in … creating an EFMP system where you have services in place when you arrive at a new location,” she said. “We’ve had the opportunity to see what it means to be a special-needs family at all ranks, the very basic challenges of struggling with the system, having to relearn and renavigate with every move. And when we run into a roadblock, having nothing we can do about it.”
Hitting a wall
Quantifying the number of disabled military-connected children in public education is tricky. The Defense Department says it has 120,000 families enrolled in its EFMPs, but it does not break down how many children are involved or how many eligible families are not enrolled. In 2009, the Pentagon said 90,000 families were enrolled in the program, but estimated that there were 130,000 eligible families that were not enrolled, according to The Washington Post.
One role of the EFMP is to offer medical screening to ensure that the servicemember is assigned to a location that offers adequate services. The military focuses less on the education piece because all schools are required to comply with special-education law.
The program also offers family support. There is a directory of special-education services broken down by school district and training and webinars for parents on the intricacies of special education. But each branch runs its EFMP differently, and all have limitations.
In 2010, Congress approved an Office of Special Needs to oversee the EFMPs and streamline the branches. The goal was to improve support and identify gaps in services. The job has proven complex.
At a briefing last month, director Ed Tyner said efforts are under way to create a centralized database for EFMPs. Local EFMPs sometimes work with school liaison officers if they hear about problems. But the program’s role is limited when things go wrong in the school.
“DOD really doesn’t have a jurisdiction over a public school,” Tyner said. “We don’t have a way to really look at or monitor state-run public schools with special-ed programs.”
That’s where military families can fall through the cracks, particularly because they are hesitant to rock the boat, said Amy Courtney, an advocate in Virginia Beach who helped the Normans.
“Military families don’t want to make enemies of the school system,” Courtney said.
Parents come in trusting that educators are on the same page and everyone is looking out for their child. When they realize that’s not happening, it often comes as a shock.
Staff Sgt. Miguel Mercado, who was medically discharged after 11 years in the Marine Corps, said that after moving from California to Maryland, he had meeting after meeting with the school district over its decision to remove IEP eligibility for his stepson, who had been diagnosed with ADHD.
“It took me a few minutes to realize these people are not here to help me,” he said. “They are here to defend the decisions that were made.”
In a recent survey by the Collaborative for Student Success, 35 percent of participating servicemembers said their child’s educational opportunities were significant in deciding whether to stay in the military, and 40 percent said they would decline a career-advancing job to keep their child in high-performing schools. In 2013, then-Army Chief of Staff Ray Odierno warned elected officials that if they want to keep military bases in their communities, they needed to start paying attention to their schools.
In short, for military parents, their child’s education matters. For parents of a special-needs child, that concern is overarching, said Vickie O’Brien, the Marine Corps’ East Coast special-education lawyer. When a family has to fight the system, the stress can be overwhelming.
“You watch a Marine who has been to war cry because their child can’t go to school because the teacher is not a good fit and is yelling at their kid in class,” O’Brien said. “How does a person stay in the military and do all those things it requires if their family is in crisis?”
Mercado, who deployed twice to Iraq, including to Fallujah during the heat of battle in 2007, said he was being treated for post-traumatic stress disorder and related alcohol abuse when he and his wife took on their daughter’s school district in Maryland.
Mercado channeled his stress into becoming almost obsessed with special-education law so he could fight for his child.
“In the IEP meetings, I never felt more vulnerable,” he said. “This is not what I trained for. I can’t help my child.”
Laura Livingston said dealing with their severely disabled son’s education while her SEAL husband was away on combat deployments was also intensely isolating. Their son has Angelman syndrome, a neurogenetic disorder. He has seizures, is unable to speak, has vision, hearing and other health issues and is severely mentally impaired. She thought he was safe in school.
One day, she arrived at her son’s class unannounced and saw him in the corner strapped to a special-support Rifton chair. She watched in horror as he rocked back and forth — no one able to see whether he was about to have a seizure. The teacher said he was in time-out for throwing a pencil and paper the teacher had put in his hand, even though he is unable to write.
“My husband was going over and fighting in the Middle East and he had to take more precautions in his treatment of the people he was fighting while my child was being strapped down in a chair all day,” Livingston said.
Through SEALkids, Livingston got advocacy help from Courtney, who accused the district of misusing the chair. They prevailed on the district to place her son in a more-controlled private setting. But the stress was overwhelming, Livingston said, and the couple are divorcing.
What the military can do
After fighting with the school district in San Antonio to accommodate her son’s disabilities, Lorin Neslony went to the Air Force, trying to alert them that its families are struggling.
“We move so frequently,” she said. “EFMPs can’t help us; school liaison officers can’t help us.”
She urged the Air Force to consider hiring advocates and special-education lawyers, like the Marine Corps. But she said officials told her that they don’t believe the problem is big enough. To Neslony, it was a Catch-22. Families don’t think the military can help, so they don’t alert them, and then the military says they aren’t seeing a problem.
“I just feel the Air Force needs to step it up for their families,” she said.
It’s difficult to hold schools accountable without pressuring them with “the nuclear options,” namely advocacy or due process, said Michelle Linn, a former Air Force spouse who raised two disabled sons and now oversees housing at Air Force Space Command Headquarters in Colorado. Linn works closely with the special-needs community. She said she’s been pushing the idea of legal support for those families.
“That’s what we need to look at with the Air Force — to provide more presence at this juncture,” she said.
Grace Kim, the Normans’ lawyer, said the Department of Defense should have an office to oversee implementation of special-education laws for its families.
“The military asks so much from these servicemembers and their families,” she said. “Some of these servicemembers don’t come home. That’s a lot to ask to not take care of your own. It shouldn’t be this way.”
When the hearing officer in the Norman case came back with a ruling in their favor, the findings were damning.
The school’s failure to provide the IEP accommodations was “very troubling” and its failure to implement the IEP was “a serious infraction.” Parental concerns went unheard, the officer wrote, finding Marisa’s academic regression “of greatest concern.”
Marisa’s disabilities are formidable. She has cerebral palsy and is partially paralyzed on her right side. She also has neurodevelopmental and neurological disorders; hearing, vision and sensory processing difficulties; and some trouble with language, reading comprehension and math calculations. She speaks in a whisper due to a tracheotomy when she was an infant, and takes medication for ADHD, anxiety and obsessive-compulsive disorder. But she is intelligent, and her deficits, if addressed one by one, can be overcome. Given the right tools, Marisa is able and eager to learn.
The judge found that the school and the district had neglected Marisa’s education and failed to comply with the basics of the law requiring that every student be provided a “free and appropriate public education.” The district was ordered to reimburse the Normans for Marisa’s first year in private school and pay for the next year. The district has yet to pay them.
The school district insists it can give Marisa a proper education in middle school and is appealing the decision, saying the judge applied “the wrong standard.” Deputy City Attorney Kamala Lannetti said that the district had devoted hundreds of staff hours “to meetings, evaluations and communications with the family to resolve the parent’s concerns” but the parents and the district “could not agree on the student’s needs.”
Heather Allen, the district spokeswoman, added via email: “I would like to underscore our commitment to collaborating with our parents and military school liaison officers to provide the best possible educational services for all military-connected children. It is an honor and responsibility which every person associated with Virginia Beach City Public Schools takes seriously.”
The Normans believe the district wants only to win — and has stopped seeing Marisa as a person.
People tend to look at children with special needs as not very functional and not worth much investment, advocate Levay said. But given the chance, most can learn quite well.
Marisa said she is happy at her current school, where she is doing well and participating in extracurricular activities like cheerleading on a special squad. She’s afraid when the other girls lift her for a cheer, she said. But when she did the move in February during a regional cheerleading competition — the only people beaming more proudly than she was were her parents.Read on stripes.com