Military families are fighting their own battles to get the health care and needed school services for their special needs children as required by law, they told lawmakers — with spotty assistance from defense and service officials.

Navy wife Michelle Norman told lawmakers Wednesday that she and her husband have paid more than $220,000 in legal expenses in their fight with Virginia Beach City Public Schools to get the services for their daughter in school, who was born prematurely and diagnosed with a number of disabilities.

The issues with special needs families transcend all ranks of military and are at duty stations around the world, said Norman, whose husband Capt. Cassidy Norman is commanding officer of the command and control ship USS Mount Whitney. She testified before the House Armed Services Committee’s military personnel subcommittee.

“How can an enlisted family even begin to fight?” she said, noting that spouses of special needs children are too burdened, too scared, and too broke to get the help they need.

Norman said she initially approached her installation’s Exceptional Family Member Program coordinator, the school liaison officer and legal office, and was told they couldn’t help her or be her advocate. “When you know a school is breaking the law, how do you hold them accountable?” she asked. Under the Individuals with Disabilities Education Act, school officials must provide the special needs education and needed services for a child’s academic achievement goals. But states have some flexibility.

Problems with inconsistency and lack of advocacy have plagued military special needs families for decades. Advocates testified about families issues ranging from difficulty in getting their health care providers and support system in place after a permanent change of station move; being transferred to locations without adequate medical and educational resources to meet their needs, and perceptions surrounding EFMP, and the whether it could negatively affect a service member’s career. While EFMP is effective at some installations, it varies widely. The DoD Military Family Readiness Council has discussed the issue for years, and recommended improvements and standardization in the EFMP.

The services also use different mechanisms to determine assignments for service members with EFMP family members. Some families are choosing to stay in one location when the service member is transferred, others are home-schooling their children because of the difficulties.

Currently, there are more than 103,000 service members with more than 139,000 family members in the EFMP programs.

“EFMP is falling short of serving families as intended,” said Karen Ruedisueli, director of health affairs for the Military Officers Association of America.

An official with the Government Accountability Office testified that DoD has made limited progress in fixing problems the GAO identified nearly two years ago. DoD still can’t assess the EFMP services required by law, said Jackie Nowicki, director of K-12 Education for the GAO. Until DoD is able to assess the EFMP performance, they won’t be able to ensure special needs military families receive adequate, consistent, reliable support, no matter where they are stationed, she said.

Rep. Jackie Speier, D-Calif., chairwoman of the subcommittee, said she found the GAO report to be “stinging.” Lawmakers put DoD and service officials on notice that they expect changes to be made.

“It’s not good enough for you to come here and make happy talk about how you want to be helpful and how grateful you are for the courage of these parents to come forward and speak about their experiences,” Speier told the officials who testified following the spouses and advocates.

“We’re going to be hawks on this,” said Speier.

The officials will be expected to return to give progress reports to the subcommittee every three months, she said.

Rep. Trent Kelly, R-Miss., ranking member on the committee, said “it’s shocking” that public school systems are denying care to these families against federal law.

Speier also expressed concern about families’ comments that some school systems believe they can delay providing the services, because if they wait long enough, the military families will move out of the area.

“We’re going to fix this issue,” said Speier.

She made note of the dozens of military families who had come to the hearing, many of whom had to be turned away due to lack of space. Speiers said she’ll start by holding town hall meetings so that all the families who came to the hearing will have a chance to express their views.

“The services violate both law and DoD policy when they fail to ensure family members receive the medical and administrative support required under EFMP,” Speier said.

But there’s one service that appears to be doing right by their special needs families — the Marine Corps, according to some family advocates. Lawmakers told DoD they need to look at the Marine Corps model, and not “reinvent the wheel.”

Unlike the other services, the Marine Corps has special needs attorneys who help families with these legal issues; and they have requirements that Exceptional Family Member Program personnel contact their special needs families at least quarterly. They also have more EFMP personnel per capita for the families — 107 full time positions for 11,000 EFMP Marine Corps families, compared with, for example, the Army, which has 119 positions for 54,000 families, Speier said. Yet, the Marine Corps is the smallest service branch.

The Defense Health Agency recognizes there have been problems in finding health care, especially some specialty care in some areas, said Navy Capt. Ed Simmer, chief clinical officer for Tricare Health Plans. He noted the families’ significant problems accessing the care they need. “That’s unacceptable. We can and should do better,” he said. Among other things, Tricare contractors are working to add providers.

Improving EFMP is a priority for DoD, said Carolyn Stevens, director of the Office of Military Family Readiness Policy. “We know we have more work to do,” she told the subcommittee. Through a number of feedback mechanisms, she said, they are aware that many families have concerns regarding the EFMP. Among other initiatives is a pilot program to help the service branches determine the adequate EFMP staffing levels at installations.

DoD is “reenergizing” its coordinating committee for family members with special needs, to ensure there’s senior executive level oversight; and developing an EFMP family needs assessment form; working to standardize the family member travel screening form, Stevens said.

“I heard a lot of talking about processes," Kelly said. "What we’re talking about is people. We’re talking about those who are the very most vulnerable that we should be helping. We shouldn’t be making it harder. We should be making it easier.

“Every one of you should be asking yourself, ‘What have I done today to make their lives better?”

Karen has covered military families, quality of life and consumer issues for Military Times for more than 30 years, and is co-author of a chapter on media coverage of military families in the book "A Battle Plan for Supporting Military Families." She previously worked for newspapers in Guam, Norfolk, Jacksonville, Fla., and Athens, Ga.

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