WASHINGTON — Shortly after his baby daughter’s open heart surgery in Boston nearly six years ago, Army 1st Sgt. Joshua Carrigg was reassigned to Joint Base Lewis-McChord in Washington state and an uneasy fit for the family of five became a nearly three-year nightmare.

Carrigg and his wife, Austin, said they couldn’t get the services they needed for their two younger children with special needs — including therapy or a school aide for their son with autism. Their assigned doctor denied their baby girl — who also has Down syndrome — the hearing treatment she required and refused to acknowledge their son’s diagnosed life-threatening condition, leaving him in peril, they said.

They thought it was their personal struggle.

But now, in the metro Washington, D.C., area and having restored medical services and diagnoses to both children, the Carriggs know better. Their struggles are all too common for military families with children who have special needs.

Eight years after Congress set in motion legal requirements for the military “to enhance and improve Department of Defense support around the world for families with special needs,” and create an office to provide direct oversight, those families say the military has failed to live up to those requirements.

The Carriggs joined 35 military families last month in a written complaint outlining the Department of Defense’s “failure to follow the law, its history of mismanagement of these critical programs and the inconsistent approaches across the services.”

The complaint, delivered Aug. 9 to the Department of Defense Inspector General, requests an in-depth review and oversight. Their hope is that the repeated promises by the Defense Department to improve its performance for families of those with special needs will finally bear some fruit.

“DoD’s repeated commitments to improve have not resulted in any notable progress,” the complaint states. “It is time for someone to get to the root cause of this failure so our families get more than empty promises.”

For the Carriggs — and others — signing the letter feels like a risk. Austin Carrigg said she and her husband talked about the possibility that this could negatively impact the progress of his 15-year career. But the need, she said was too pressing and military families like theirs need help.

“We are just tired of fight,” she said. “You shouldn’t have to fight this hard to keep your kids alive, to show people they need therapy.

“Somebody has to do this. We can’t do this alone.”

The complaint

The 27-page complaint, signed by Maj. Matthew and Jennifer Penhale on behalf of 35 active duty and some additional Coast Guard and retired families, outlines the history of the Defense Department’s attempt to streamline a working program for families of those with special needs.

But by highlighting a series of calls for corrections and repeated Defense Department commitments to fixing the same problems year after year, the complaint stresses that things are not getting corrected.

In the 2010 National Defense Authorization Act Conference Report, Congress added provisions to Title 10 in the U.S. Code establishing an office with the Department of Defense to develop a comprehensive policy and program for families with special needs. With an infusion of $50 million, the amendment was supposed to ensure that families would get timely access to information and referrals and there would be oversight for the expansion of individualized support and case management provided by the military services. The report estimated there were 220,000 eligible family members.

“The conferees believe that expanding support for families with special needs is a critical requirement for the all-volunteer force,” the conference report stated. “Regrettably such programs have not been a priority for the Department as evidenced by requirements for expanded services for autism support” in the 2008 NDAA.

It also called for substantial improvements to the Exceptional Family Member Program, which, with an office on every base, is supposed to ensure that the needs of eligible dependents are met.

Of particular note in the complaint are Government Accountability Office reviews conducted in 2012 and again in 2018. In 2012, the GAO report cited a need for better oversight and improved services for children with special needs; more effective EFMP services; and better benchmarks for improvements, which the Defense Department promised to address.

The 2018 report, which once again called for greater oversight, showed little progress. As in 2012, the report cited inconsistencies in the support each branch provided to families of those with special needs. There are still no performance measures in place. In short, there is still no method to ensure that services to special needs families are being adequately provided.

“We believe the DOD (Office of Inspector General) has a unique ability to hold (the) responsible DOD authorities and military branches accountable for complying with the law,” the complaint states. “Without your involvement, it’s likely the GAO’s recent report will be filed away and the same problems will continue.”

Lynne Halbrooks, a Washington lawyer with the firm Holland and Knight, who worked pro-bono advising the families on their letter, said she was shocked at the similarities between the 2012 and 2018 reports.

“It was disturbing to read that the same problems still exist — and the inaction,” she said. “There’s been oversight attention, and Congress has weighed in. If Congress cares and the GAO is writing reports, I would have expected it to get better … Yet the department just doesn’t progress.”

Because of these repeated failures, military families with special needs are losing faith, said Jennifer Penhale, the signatory on the letter, who has four children — three with autism.

“EFMP families want transparency, accountability and oversight,” Penhale said. “They want to know that when they walk into their local EFMP office, they are afforded the services and care that have been promised to them and that those working in the EFMP … are in compliance with DOD and federal law. Right now, these families don’t have that assurance.”

The Penhales

Having three children enrolled in EFMP for the last 12 years, the Penhales have watched their children grow up in the program. The family moved six times since their twin girls with severe autism, now 13, were born.

“We’ve experienced firsthand the inefficiencies, mismanagement and ineffectiveness of this program,” Penhale said.

But nothing rivaled the experience of their 2017 move to MacDill Air Force Base in Tampa, Fla., she said.

MacDill is considered an “expedited” base, which means eligible families are automatically cleared for EFMP. But the assignment office did not verify the medical and educational needs of their daughters, who are both unable to communicate, and their younger brother, whose autism is less severe, she said.

The services they needed were not available and Jennifer struggled to home-school three children with autism and their oldest typically-developing teenage boy on her own.

Facing “undue stress and hardship on our family,” the Penhales applied for reassignment and the Air Force approved. They moved to northern Virginia, where there is a huge backlog for specialized providers and they cannot get the approved number of hours for autism therapy, she and others said. The school district is also unable to provide the services they need.

So Penhale continues to home-school all four children.

The problem is so widespread, the EFMP told the Penhales, that their only recourse is to file due process to force the schools to provide more services. They would have to pay out of their own pocket.

“Our EFMP experience is unfortunately not unique and has become more the norm than the exception,” Penhale said.

“We feel like we — the families of the military — are the forgotten ones. We are overworked and overstressed, just trying to keep our families living and functioning, so we have to rely on others to push for that.

“Look at 2012 and 2018 — almost identical. Nothing has changed.”

The Carriggs

When Joshua Carrigg was assigned to Joint Base Lewis McChord, he urged the Army to reconsider, Austin said. But he had already received a hardship assignment to Boston for Nickolas’ care, which is where Melanie had open heart surgery. This time, he was told he had to go — with or without his family.

So, while Joshua Carrigg drove the car cross country with their eldest son, Austin Carrigg boarded a train with the two youngest who couldn’t fly. Nickolas, then almost 10, has autism and suffers from a rare medical condition where he can suddenly go into anaphylactic shock. And the baby, Melanie, in addition to having a congenital heart defect, was deaf and has Down syndrome.

Once on base, they found they couldn’t get the services the Army promised — access to therapies critical to the children’s’ development.

Then, the military doctor stripped Nickolas of his diagnoses. He said Nickolas did not have autism, he just had parents who never said “no” and he denied his histamine condition, known as mastocytosis, Austin Carrigg said.

“Life spiraled on its head,” she said.

Nickolas lost his in-school therapy. He’d come home and just rock back and forth on the bed, his mother said. Anxiety triggered more of his attacks and his parents had to treat him at home with an Epipen and monitoring because the base hospital refused to acknowledge his problem.

“I think it came down to money,” Austin Carrigg said. “All these families come in. They flood the medical treatment facility. There are not enough providers.”

Meanwhile, Melanie had received a cochlear implant in one ear. But the same doctor turned her down for a second one. He said the hospital could “spend the $60,000 on a typical child — not a child like Melanie,” she recalled.

“We would sit up at night trying to come up with a way to get out of JBLM,” she said.

Finally, when Melanie reached school age and there was no one who spoke sign language, the doctor agreed it was time to let the Carriggs move.

Now in the metro Washington, D.C. area, Nickolas has gotten both diagnoses back — and with them medical and school nurse services. Melanie received a second cochlear implant.

She can hear and Nickolas is getting A’s and B’s in school.

Still, it’s a tradeoff. They lost at-home nursing care, so Joshua and Austin split their nights into four-hour watches so that Melanie can get her hourly feedings and her C-Pap machine stays clear.

Melanie’s mother believes that given the chance, her daughter could graduate high school with a diploma and develop into a young woman who could live independently. “But she needs to be given the resources to be able to do that,” she said.

It’s that urgency that these military families are urging the inspector general to recognize. The delays in streamlining the programs for military families of those with special needs are seeing an entire generation of children come through.

For them, time is running out, she said.

“These families don’t have a long time to wait. They are the most medically fragile families in the military. This is urgent for them.”

© 2018 Stars and Stripes
Distributed by Tribune Content Agency, LLC

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.