Proposed Rule Would Expand Respite Care Access for Families With Special Needs

Hunter Codding, 4, bonds with his service dog, Indy, at Fowler Park on Luke Air Force Base, Ariz. (U.S. Air Force/Clinton Atkins)
Hunter Codding, 4, bonds with his service dog, Indy, at Fowler Park on Luke Air Force Base, Ariz. (U.S. Air Force/Clinton Atkins)

A proposed military benefits policy update would give more military families with special needs access to respite care.

Currently, to receive respite care through the Pentagon's Extended Health Care Option (ECHO) program, military families with special needs must also qualify for and be receiving other ECHO program benefits, such as nursing, therapies or medical supplies.

The proposed rule change, however, would remove that requirement for "concurrent ECHO benefit." Instead, families would qualify for up to 16 hours of care simply by being in the ECHO program.

"This proposed rule seeks to eliminate the concurrent ECHO benefit requirement and allow beneficiaries enrolled in ECHO to receive a maximum of 16 hours of respite care per month, regardless of whether another ECHO benefit is received in the same month," states the notice, which was published in the Federal Register on Aug. 17. It is open for public comment until Oct. 16.

If the rule goes through, an estimated 2,924 ECHO users will be able to use the respite program, at an average cost of $1,937 per user, the notice states. The proposed rule is estimated will cost the Defense Department $5.7 million annually (based on fiscal 2017 data).

For families with extraordinary medical challenges, the rule change could be the difference between getting a break and not.

Whitney Fowler's adopted daughter, Libby, 7, had what Fowler said were "severe cardiac defects" when she was brought home from China. Tricare and ECHO have since provided her with lifesaving but long hospital stays, skilled nursing care and other medically necessary services.

While Libby's improved heart health means she can attend schools and no longer requires a full-time, in-home skilled nurse, she does need care by someone who is comfortable with her challenges, which can include a feeding tube.

The respite program could provide Fowler with a break, which could help her better care for her other family members and herself, she said. "My last few years, I haven't even been involved with other military families because I haven't been able to get out. If somehow or another this new rule could change that, it would greatly impacted."

A bigger problem for Fowler is finding a respite care provider who can meet Libby's needs. Non-verbal and with a feeding tube, Libby needs care from someone who is comfortable with her challenges, her mom said.

"It's not just like some grandma or a babysitter; it's not like that at all," Fowler said. "She's wonderful and fun to be around, but she scares people, too, unless they're fully comfortable with that."

-- Amy Bushatz can be reached at

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