TRICARE’s program ministering to the complex health care needs of severely disabled family members of active duty personnel has a new name—and an expanded mission.

What was known as the Program For Persons With Disabilities (PFPWD) is now ECHO, the Extended Health Care Option, and though it currently serves only about 4,000 people, the program’s impact on them and their families will be substantial.
A Natural Progression

Since the 1960s, various DoD programs have met the active duty population’s special care needs. These programs provided diagnosis and treatment, durable medical equipment, assistive devices and training, special education, institutional care, and transportation and attendants. (Such services often are provided by states, but because of the frequent moves associated with military life, families who normally would use existing state services frequently aren’t able to fully take advantage of these services or to meet state residency requirements.)

“ECHO is essentially the same program as the PFPWD, albeit with a new name and some exciting new features—extended home health care and respite care,” says Col. Daniel L. Cohen, USAF, MC, former director of the Office of the Chief Medical Officer for the Office of the Secretary of Defense (Health Affairs). Cohen was ECHO’s chief architect, as his office was charged with structuring and finding ways to fund the new initiative after Congress gave DoD discretionary authority in 2002’s National Defense Authorization Act (NDAA).

PFPWD “was insufficient to meet the real needs of beneficiaries,” Cohen says. “These needs required skilled nursing interventions above the limits of the [2002 NDAA’s] new home health care benefit and, in addition, the need for rest for caregivers or respite care services for beneficiaries.” The NDAA required DoD to align its existing unlimited home health agency and skilled nursing facility benefits to mirror the benefits and payment methodology used by Medicare, Cohen explains.

What’s New

Fulfilling this complex mandate was no small feat, but in the end, the ECHO benefits do seem to be worth shouting about.

For starters, the monthly financial assistance cap increases for the first time in 20 years, to $2,500 from $1,000.

Next, a robust home health care component aids beneficiaries with extraordinary physical or psychological conditions that render them homebound. This aspect of the program is called ECHO Home Health Care (EHHC), and will be made available by region between June and November 2004. It offers medically necessary skilled nursing care services above the 28-hour-per-week limit set by the TRICARE Home Health Care benefit.

The ECHO monthly cap is separate from, and may be received in addition to, home health care services counting toward EHHC financial cap. The rank-associated cost share for these services will remain the same: ranging from between $25 a month for an E-1 and $250 a month for an O-10.

Clarifying Types of Care

By definition, skilled nursing care refers to services that are required to be performed under a physician’s supervision, and it can only be provided by a registered nurse, a licensed practical nurse, or a licensed vocational nurse.

Cohen explains that TRICARE always has been structured to provide in-home skilled nursing services. “However,” he says, “over the years, the line between skilled (professional) services and less skilled (nonprofessional) services has become blurred.”

Part of the reason for this is that family members have been trained to perform more and more of the care that once was considered skilled. A result of this trend, Cohen notes, is that as parents or spouses assume increased responsibility for providing interventions and care in the home for both children and adult family members, they’re getting overwhelmed physically and emotionally.

“It became apparent to many of us that what these primary caregivers really need is rest, and ECHO is the vehicle for that also,” Cohen says. He’s referring to what he considers a key feature of ECHO: respite care.

Respite Care

What exactly is respite care? Here’s how TRICARE defines it: “Respite care is short-term care for a patient in order to provide rest and change for those who have been caring for the patient at home, usually the patient’s family.” Both ECHO and EHHC offer respite care, at different levels, depending on circumstances.

It’s an incredibly important benefit, according to Cohen and others, including Sue Schwartz, DBA, RN, deputy director of MOAA’s Government Relations department and one of the contributing authors of the ECHO legislation. “Respite care is a needed benefit to alleviate the strain on our military families who are already under great stress from military life,” says Schwartz.

Cohen agrees. “Giving active duty members and their spouses who have severely disabled children programmed rest time had real merit as preventive mental health intervention.

“Caring for a mentally retarded or severely physically impaired child is incredibly demanding. There are families out there where the adult care providers rarely, if ever, have time away from the ‘care environment’ by themselves or simply have sufficient time to sleep due to the care requirements of homebound beneficiaries.”

Families in these circumstances back Cohen up. “Respite care is the No. 1 request from families with a disabled child, especially when the servicemember is deployed,” says Joyce Wessel Raezer, director of Government Relations for the National Military Family Association, which also worked to craft ECHO policies.

Needed Relief

“I’d have given anything for someone to come in [to provide respite care],” says Jennifer Rooker, a Marine Corps spouse. Her 6-year-old son, Ryan, has cerebral palsy, and her daughter, Emily, now 3, was born with genetic conditions that have led to speech and cognitive delays. Additionally, Emily had undiagnosed reflux as an infant, and the demands of that condition were overwhelming, Rooker recalls.

“We didn’t sleep for eight months. That was so bad — I couldn’t even tell you how bad it was,” Rooker says. “I was afraid to have a babysitter or even a friend [watch Emily], because she could get on your last nerve.”

With ECHO, the family of every beneficiary receiving services will be entitled to 16 hours a month of respite services during the month in which ECHO benefits are provided. For homebound beneficiaries, where constant, around-the-clock care is being provided by parents to a large degree, EHHC will provide 40 hours a week of respite, designed specifically to be a sleep benefit. Families can receive either the 16-hour ECHO respite care or the 40-hour EHHC sleep benefit, but not both.

“The emotional, physical, and financial demands placed on families to care for impaired children, who need more love and attention and patience and parental endurance than healthy children, are daunting and stressful,” Cohen says. As a pediatrician, he’s aware of the realities of caring for special needs children.

“It is frequently the case that the husband and wife in this situation are unable to take time away to go to a ball game, or to take their other children to an amusement park, for example,” Cohen says. “As much as they love those [disabled] children, it does take a toll.”

Helping military families in these extraordinary circumstances undoubtedly helps the parents, and the patient benefits as well, as Heather Hebdon can attest. Her husband served in the Army for more than 20 years, and all three of their children had special needs. Her first child, Ian, now 28, was diagnosed at birth with Down syndrome. “If we hadn’t had respite care from time to time, we would not have survived as a family, and our son wouldn’t have thrived as he has,” Hebdon says.

Though the respite care her family used when Ian was a young child was not provided by the military medical system but instead through a network of family, friends, and community resources, Hebdon says she believes what ECHO now offers will lighten the load for caregivers.

Being Part of It All

To take advantage of ECHO’s offerings, active duty military families first must be enrolled in their service’s Exceptional Family Member Program (EFMP). Then they can enroll in ECHO. Military treatment facilities (MTFs) will be able to assist with this process.

“Each MTF and (TRICARE) regional office will have individuals knowledgeable about the program,” Cohen explains. “We’ll be working to make sure the appropriate education is made available to all. Contractors will be required to alert beneficiaries to changes in the program.”

Most of ECHO’s services will be available to all eligible beneficiaries, but there is a limit: In-home nursing care and respite care will not be provided overseas. Cohen explains that, because ECHO is tied in to Medicare reimbursement and certification requirements and because there aren’t any overseas Medicare-authorized providers, “ECHO in-home nursing and respite care benefits will be limited to the United States, Puerto Rico, and some territories but will not otherwise be available overseas.”

Additionally, potential beneficiaries from the National Guard and Reserve sector have a complicated path to negotiate in securing ECHO benefits. Reservists called to active duty for more than 30 consecutive days can become eligible for care in the military health system. They must enroll in the Defense Enrollment Eligibility Reporting System, then they must enroll in EFMP.

“The issue about [National] Guard and Reserve folks is not an easy one,” confirms Raezer. “Not only will they have to be informed about the program, [but] they also need to know about EFMP and the registration requirement.”

Reserve families will remain eligible during they time after they come off activity duty when they still are eligible for transitional health care, but their eligibility will cease when their Transition Assistance Medical Program benefit period ends.

Where To Turn

Each family’s circumstances vary and can be extraordinarily complex. Trying to decipher how ECHO’s services might apply to an individual case could be a daunting task, but DoD’s MTFs have specialists on-site to help. Beneficiary counseling and assistance coordinators serve as a clearinghouse for information and oversee each case, and can help to design patient care plans.

Other resources include Hebdon’s organization, STOMP, based in Tacoma, Wash. STOMP stands for Specialized Training of Military Parents, and its mission is to provide support and advice to military parents. Military parents run it, people who are in the same boat as ECHO’s target audience.

Also, TRICARE Management Activity as well as TRICARE’s regional offices have knowledgeable staff that can address beneficiaries’ concerns. TRICARE officials say ECHO will be available in all regions on Nov. 1, 2004.

The Right Thing to Do

Why go to the lengths Cohen, Schwartz, Raezer, and others did to elaborate upon a program that only serves a few thousand beneficiaries? Aside from the fact that the NDAA dictated some of the changes, they knew it was a necessary and valuable entitlement to offer active duty military families.

“The ECHO program is probably by far the most comprehensive employer-sponsored benefit program in the nation to care for disabled children,” says Schwartz. “Not only is it a good program, it also is the right thing to do, to provide care for the disabled children of our military families.”