This article by Judy Christie originally appeared on the Military Officers Association of American (MOAA) website.
Taylor Kracht, 23, was born with a congenital malformation of the brain that has left her dependent on others - 24 hours a day.
Unable to speak or walk, she requires a feeding tube for nourishment, several breathing treatments daily, medication, and therapy. She functions at a level of less than 1-year-old age equivalency.
The daughter of Lt. Amber Kracht-Smith, a U.S. Air Force nurse, Taylor's story is an example of a challenge some military families face and is part of a national conversation about what happens when an incapacitated child turns 21 with one or both parents in the military.
In Taylor's case, she was turned down as "an incapacitated child over 21," leading her mother to advocate for a clarification of dependency policy and how it is interpreted - both for her daughter and other military families.
For Kracht-Smith and others, there often are more questions than answers.
"Taylor has profound physical and intellectual disabilities that will render her incapable of self-support for the rest of her life," Kracht-Smith says. "Despite this, she was denied dependency as an incapacitated adult."
The gap in services for "our most vulnerable" must be unintended, Kracht-Smith says, "a misunderstanding or an oversight."
She shares her family's experience to raise awareness of barriers and challenges that active duty families with incapacitated and/or medically complex children face and "to bring attention to the broader issue of dependency determinations - as they relate to incapacitated adults/children transitioning into adulthood."
Brooke Goldberg, director of Military Family Policy/Spouse Programs for MOAA, agrees the dependency issue needs attention. Officers should be able to handle their careers and still meet the needs of their disabled children, she said.
"Military families sacrifice a lot of normalcy and predictability for service," Goldberg says. "Keeping your incapacitated adult child within your family unit should not be included in those sacrifices."
Unique situations with common threads
While each family's case is unique, interviews with parents and medical professionals reveal common professional and personal threads. Bureaucratic details often are overwhelming and aggravated by intense paperwork, differences in how various branches of the armed forces handle cases, and shifts in how a policy is interpreted when personnel changes.
A physical therapist and physical clinical specialist with a doctorate in physical therapy, Barr employees about 80 people and says more than half of the clinic's patients are from military families.
"There's not a uniform answer," she says. "Everyone's situation is so different." However, one thing is similar: "Every decision revolves around the care of this child."
In addition to Tricare questions, benefits such as Social Security and Medicaid have to be navigated, and Barr says when a severely disabled child reaches age 16 or 17, parents might need to talk to a disability attorney to learn about the nuances of Social Security law.
She often encounters the tough choices families make, such as one parent having to quit work to take care of a special-needs child and the military retention issues that arise.
"There's a lot of anxiety about whether to get out or not," Barr says.
'This need to serve my country'
Kracht-Smith grew up in an Air Force family, has a brother who is serving a career in the Army, and always has felt "the calling ... this need to serve my country." She speaks with passion about the characteristics - honesty, dependability, and excellence - that motivated her to commission.
However, when Taylor was born, military plans were put on hold. "When you have a child with special needs, that adds a whole extra level of complexities," she says.
At age 6, Taylor's school had an opening in its residential facility, and she was moved there for improved education, therapy, and medical care. "It was one of the hardest decisions I've ever had to make," Kracht-Smith says. "That's what she needed, a place where she could receive the care she deserved."
After much thought and research, Kracht-Smith decided to join the Air Force in her mid-30s. While she did not join for the benefits, she was assured Taylor, as an incapacitated dependent, would be cared for. "I was told, 'We're going to take care of your family so you can serve to your greatest ability,'" she says.
Her recruiter even put her in touch with a retired officer who had a child with a similar disability.
The officer reassured Kracht-Smith the Air Force had programs in place to address the needs of children like theirs.
When Kracht-Smith received her commissioned in 2015, it was mandatory that Taylor, who lived in a residential care facility, be enrolled in the Exceptional Family Member Program (EFMP).
Only seven days after EFMP status had been approved, however, Kracht-Smith was notified that her daughter's 21st birthday was going to be an issue and that she would have to complete "incapacitated child over 21" paperwork, which she submitted immediately.
On Taylor's 21st birthday, Kracht-Smith was notified the application had been disapproved and her daughter would lose dependency status, Tricare benefits, and EFMP services immediately.
"Developmentally, there's nothing different," Kracht-Smith says. "But this 21st birthday is a magical switch that changes everything, even though nothing changes with Taylor."
With Kracht-Smith assigned to report to a base in Virginia in less than three weeks, Taylor's
North Dakota physician recommended medical air transport.
Kracht-Smith says that although her command worked diligently to find a solution and advocate on their behalf, Taylor's medical transport was not allowed, and the family had to figure out how to make the 1,500-mile journey by car.
The trip took three days and involved renting a U-Haul for medical equipment. Several times a day, they had to locate facilities with family restrooms to accommodate a cot for Taylor, a wheelchair, and the space required for freshening her, giving her breathing treatments, tube feeding, and administering medication.
"Needless to say, it was a long and difficult journey for our entire family," Kracht-Smith says. "Despite frequent stops, overnight stays, and our best efforts at repositioning during transport, Taylor developed a lower extremity pressure ulcer, further complicating her health status."
Tricare and Medicaid covered Taylor until she turned 21, but when dependency was denied, the obligation moved to the state of North Dakota's Medicaid program. When Kracht-Smith was assigned to Virginia, Taylor had to reapply for Medicaid there.
This is a key problem for military families moving frequently.
Medicaid changes from state to state
While Tricare military insurance is national, Medicaid differs state-by-state and the application process is complicated. There might be long waiting lists and lapses in coverage.
Re-establishing medical care and other services for an incapacitated child with a move can be "terribly, terribly difficult and very stressful," Kracht-Smith says.
In addition, families who make military moves struggle to build and maintain care support networks. Some connect via Facebook groups or even stop a parent leaving a doctor's office to ask a question and become acquainted.
"You make connections, and you ask questions, and you hope someone can help you," Kracht-Smith says.
As she has advocated for her daughter, some have suggested Kracht-Smith, who has two other children, terminate her parental rights or relinquish guardianship of her daughter.
"This is not an option I am willing to consider, nor does it lend a solution to the issue of dependency," she says. "I have family supports in place should I be tasked with deployment or TDY. However, if I am asked to PCS, it is imperative that Taylor relocates with her family and that we are near appropriate services. I love my country and am honored to serve, but my family will always be my first priority."
She acknowledges the change in Taylor's dependent status and difficulties in getting answers has affected her desire to remain in the military long-term.
"As an older-than-average lieutenant, mother of three, parent/guardian/advocate to a medically complex child, and nurse, I am quite resilient," she says. "However, after three years of advocacy, I am left feeling exhausted, alone, and forgotten."
Goldberg says that resources and answers should be easier for military families to find. "We hope there is a way to provide predictable family-focused outcomes without forcing servicemembers to choose between continued military service and their child.
This article, 'Incapacitated' or Not? Pentagon Rules Inconsistent, originally appeared on the Military Officers Association of American (MOAA) website. MOAA is the nation's largest and most influential association of military officers.