Special needs: Help along the way

When Heather Hebdon began her journey as a parent of a special needs child some 30 years ago, there was no road map for military families like hers.

“When my son was born, they didn’t have an Exceptional Family Member Program,” said Heather, whose son has Down Syndrome. “Every time we PCSed, we had to reinvent the wheel. I had to find the resources, I had to retell his story. I had to build credibility, learn terminology that was different at each place.”

Her experiences led her in 1985 to found Specialized Training of Military Parents with a federal grant from the Department of Education. The organization, which she directs, provides advice, advocacy and information for military families with special needs.

All STOMP staffers are parents of children with disabilities, and all are spouses of active-duty or retired personnel.

“We’ve been there, we’ve had to walk through the system trying to get resources for our child,” she said.

STOMP volunteers across the U.S., Japan, Korea and Germany give guidance and support at no cost. Each month the organization conducts various types of events at military installations worldwide, including two-day workshops for parents, educators and care providers.

Between now and December, STOMP workshops are scheduled for places as widespread as Spangdahlem Air Base in Germany, Schofield Barracks in Hawaii and Fort Jackson in South Carolina, funded by each installation.

“It’s important for parents to have information so they can move forward and be their own best advocate,” said Heather.

“We’re not there to take the place of the Exceptional Family Member Program or the school liaison officer or the health benefits advisers. Our job is purely to augment those resources and give them additional ability to ask the tough questions they might not even know to ask.”

Heather acknowledged that improvements are still needed but noted that the growth of military programs for military families with special needs has been “amazing.” As examples, she offered the development and growth of the EFMP, improved ability to transfer Individualized Education Programs from state to state and respite care for military parents with special-needs children. Respite care has recently been expanded to all services, though it is not available everywhere yet.

Another stride forward, Heather said, was the creation of the Office of Community Support for Military Families with Special Needs at the Pentagon.

Dr. Rebecca Posante is the deputy director of the office, which was initiated by the 2010 National Defense Authorization Act.

The office directs the policies governing special needs programs, which are administered individually by the Army, Navy, Air Force and Marine Corps.

“We really want people to know that help is available,” said Dr. Posante, adding that enrollment in the EFMP is essential for all branches to identify families with special needs and make sure they are assigned where appropriate services are available.

“Our office works with the services to make sure we have a standard approach to what families can expect so that when they go from place to place they know what kind of basic level of service they can expect at a new location,” she said.

Relocations are complicated for families with special needs. The 2010 National Defense Authorization Act stipulates that military assignments for special-needs families should be at least four years.

Even with extended assignments, Dr. Posante said her office is aware that waiting lists for services like Medicaid can be longer than a military family’s assignment.

“As the Department of Defense, we don’t have direct control over these issues,” she said. “With the budget issues going on, with civilian families on these waiting lists, there is no easy way to fix this. We’re trying to figure out how to help families access the services and also how we can work with Congress to help make some changes.”

For military families with special needs, there are no easy answers, but there is help on the journey.

For more information about STOMP, including workshop locations, see www.stompproject.org.

To connect with DOD programs, see this link for information about the Exceptional Family Member Program  and the Plan My Move tool.

Read more in Spouse Calls about families with special needs, concerns about EFMP, and Janelle Hill's book Special Needs Families in the Military: A Resource Guide.

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