WASHINGTON — Military family advocates have heard stories for years: Those who serve are concerned about the health coverage their kids get in the military system.

For the first time, there's now data to support those anecdotes. A study reports that while military health insurance, called TRICARE, works well for many, there are barriers. And, those barriers are above and beyond what others experience with private insurance.

On a fall day when we meet Chelsay Long and her sons Henry and Archimedes, Henry puts fear in his mother's heart.

She yells after him as he runs away in a Northern Virginia park. Henry has autism. He needs things like speech, occupational and behavioral therapy to help him function.

"Henry stop," Long shouts. "Henry! Henry, no, no, come on."

The 2.5-year-old has not been getting his therapies lately. That’s because about two months earlier the Army transferred the family from Texas to Virginia's Fort Belvoir.

"I know, it's about to go down," Long tries to calm down Henry as she catches up with him.

She said they've encountered red tape with the military health insurance system, TRICARE.

"He's not been talking as much," Long describes. "He doesn't like social situations. We can't go to the grocery store because he'll have a meltdown. We try the tools we did in Texas, but it's just not working."

Henry playground
Chelsay Long tries to get her son, who has Autism, to understand why they need to leave the playground.
WUSA9

A study by Children's Hospital of Philadelphia revealed getting consistent care is a challenge facing a lot of military families. They move every two to three years; so, every two to three years, they have to redo paperwork and find all new doctors.

"They said you need to get new referrals because you're going to TRICARE East," Long recalled. "It's not fair to us that we have to keep starting over from square one because it's exhausting, and not just for him, but for us as parents."

In their first two months in Virginia, records show they've only been able to get into one of the six specialists Henry needs to see.

"It's sad for me," the mom of four laments. "It's a lot of tears shed because it's just not fair that him, or anybody just gets dismissed. We have access to healthcare, yet we don't get it at all."

Henry's case is not the exception, according to Karen Ruedisueli, a former military spouse, who was involved in the CHOP study. It's the first time researchers compared the experiences of military kids and civilian kids on this topic.

"You cannot imagine what it's like to be a military family until you're in the thick of things," Ruedisueli explained.

The analysis looked at 84,783 children with all different kinds of health insurance and found military families with Tricare are less satisfied with access and quality of care, when compared to families covered by private health plans. Their satisfaction is more comparable to those covered by government insurance or even those who are uninsured. Data shows this is especially the case, if your kid has complex needs, like Henry.

According to the study, some of these findings can be attributed to the challenges that are unique to military families. Their stresses and access to care can be different than their civilian counterparts. For example, long deployments create strain and those children can have more medical needs. Also, many military bases are located in remote areas, where specialty care is hard to find.

"It goes beyond the inconveniences that families face in terms of these delays to medical care or the hoops that have to be jumped through to access the care and it really gets to the implications for the kids," Ruedisueli said. "These types of things can really add up."

"Our constant focus is ensuring we deliver timely and accessible care in accordance with the best available medical practice," Capt. Edward Simmer, chief clinical officer for the TRICARE Health Plan, wrote. "The care and support of patients is of paramount concern to providers and facilities across the entire Military Health System and throughout the TRICARE network."

"I don't really believe that it accurately reflects the rich benefit that we provide our military families," Dr. Terry Adirim, Acting Principal Deputy Assistant Secretary of Defense for Health Affairs, responded to the study.

The ASD(HA) is the principal advisor to the Secretary of Defense and the Under Secretary of Defense for Personnel and Readiness (USD(P&R)) for all DoD health and force health protection policies, programs, and activities, and for the Integrated Disability Evaluation System (IDES).

Adirim said they've made changes including increased case management for special needs families and expanded coverage for autism services.

Other changes include:

  • Increased case management for special needs families
  • Increased mental health benefits and removed limitations on care
  • Increased the number of providers
  • Increased substance use care
  • Expanded the urgent care benefit
  • Added the Nurse Advice Line

“We take it seriously and we know that since the time of that study, which was up 'til 2015, that we have made a number of improvements," Adirim explained.

But, Chelsay said her family experienced challenges in just the last few months. We asked Adirim what she would say to families like the Longs.

"You know, we really want to hear about what their experience is like," she answered. "So, if a family is having a challenge in either accessing care or has issues, we want to hear about it."

Long said she hopes her experience leads them to streamline the process when families move.

"Oh, absolutely, and it's something that has come to our cognizance and I know that our TRICARE staff is looking for how they can resolve issues like that through our next set of TRICARE contracts," Adirim said. "When these issues come to our attention, we do look for ways to ease that burden on families."

As for the timeline for a more widespread solution, this could take some time because it will likely require policy changes. Adirim added as families have challenges on a case-by-case basis, they should call case managers for more help.

RELATED: US military kids rule doesn't change birthright citizenship

More information from TRICARE on changes:

Each military service branch has an Exceptional Family Member Program to help families navigate the medical and educational system. EFMP helps families in two big ways: by making sure special needs are considered during assignments, and by easing access to assistance. EFMP assists families by:

  • Identifying and enrolling family members with special medical or educational needs.
  • Finding out what services are available at your present or new duty station.
  • Supporting your family with information, referrals and non-clinical case management to access services.

The TRICARE Health Plan monitors areas to avoid placing too many families with special needs in one location. Managed care contractors are responsible for ensuring specialty care referrals are seen within 28 days.

Additionally, TRICARE offers the Extended Care Health Option (ECHO) that provides coverage for the following products and services:

  • Assistive services such as those from a qualified interpreter or translator
  • Durable equipment, including adaptation and maintenance equipment
  • Expanded in-home medical services through TRICARE ECHO Home Health Care (EHHC) -- limited to the U.S., the District of Columbia, Guam, Puerto Rico, and the U.S. Virgin Islands.
  • Rehabilitative services
  • Respite care
  • ECHO respite care: up to 16 hours of care in any calendar month in which any other ECHO-authorized benefit other than the EHHC benefit is also used
  • EHHC respite care: up to eight hours per day, five days per week (for those who qualify).
  • Training in use of special education and assistive technology devices
  • Institutional care when a residential environment is required
  • Transportation to and from institutions or facilities in certain circumstances

RELATED: ‘I cry for the families that just put soldiers on a plane’ | The impact of Iran tensions on local military

RELATED: President Trump signs NDAA with medical malpractice compensation for military

Download the brand new WUSA9 app here.

Sign up for the Get Up DC newsletter: Your forecast. Your commute. Your news.