By: Amber Kracht-Smith
My daughter, Taylor, was born in 1994 with a congenital malformation of the brain, rendering her permanently incapacitated, medically fragile and dependent on others for all activities of daily living.
Taylor lived at home until she was six, when her medical needs became too great for continued home care and community-based services. At that time, she was transferred to the Anne Carlsen Center (ACC), which provides hospital-level care to a majority of North Dakota’s most medically complex children.
Then I joined the military.
After thoughtful care and consideration to our situation, I decided to join the Air Force. And, after being commissioned, I was encouraged to immediately begin the Exceptional Family Member Program (EFMP) application process.
At the time of Taylor’s EFMP approval, she remained at the ACC, was receiving TRICARE benefits, and had a dependent identification card. She was also receiving limited Supplemental Security Income (SSI) and Medicaid benefits (secondary to TRICARE) due to her disability status.
When I was working on Taylor’s medical transportation from North Dakota to where I would now be stationed, I became aware that her upcoming 21st birthday may impact her dependency status. I immediately contacted the Defense Enrollment Eligibility Reporting System (DEERS) for assistance with the required forms and documentation necessary to complete the “Incapacitated Child Over 21” paperwork.
I had just graduated from Commissioned Officer Training in Alabama and was in Arizona as part of my ongoing training on Taylor’s birthday. That day, I received two phone calls, one from the Defense Finance and Accounting Service (DFAS) and one from Taylor’s TRICARE coordinator. Both stated that Taylor’s Incapacitated Child Over 21 application had been denied and she was being dropped from services effective immediately.
Adult children are considered eligible for permanent dependency by the Department of Defense (DoD) if they are unmarried, incapable of self-support because of a mental or physical incapacity that existed before their 21st birthday, and dependent on the sponsor for more than 50 percent of their support.
Taylor has profound physical and intellectual disabilities that will render her incapable of self-support for the rest of her life. She will never marry. In 2016, the support we provided totaled more than $44,000 and included guardianship services, transportation, clothing, personal care supplies, and items not covered by Medicaid. Despite this, Taylor was denied dependency on the basis that we failed to meet the burden of 51 percent of support due to the fact that Medicaid payments, associated with necessary medical care, were used to determine eligibility when deciding whether or not Taylor was financially dependent.
For military families with exceptional and/or medically fragile adult children, a dependency denial renders the individual ineligible for a dependent identification card, TRICARE and EFMP benefits; further limiting their ability to access comprehensive and coordinated community support, medical and personnel services.
The fight for my daughter began.
As a new lieutenant training hundreds of miles from home, I had very few resources available to me. With limited contacts at my gaining base and even less knowledge about who to contact regarding my current dilemma, I reached out to my leadership. Despite their efforts, Taylor’s medical transport was denied and no alternative solutions were offered. I felt mislead, abandoned, and overwhelmed by the fact that no one within the military system could address the needs of our family and our vulnerable child.
Since our vehicles were not wheelchair accessible and medical transport was no longer an option, a special seating system was required. I had to turn to civilian agencies and the Anne Carlsen Center for assistance. Only through their support were we able to obtain the medical equipment necessary to move Taylor from North Dakota to Virginia. However, our only option for transporting Taylor’s wheelchair and other equipment was to rent an enclosed cargo trailer, which added additional expense and unanticipated logistical challenges.
After two years, we are still fighting for Taylor.
Taylor currently lives in a facility that offers nursing services, provides comprehensive and individualized care, and promotes functional status and independence. One alternative that has been suggested is that I “just bring her home.” Taylor’s medical needs cannot be adequately met at home, nor is it the least restrictive environment. Additionally, she would still qualify for SSI and Medicaid because she is a disabled adult incapable of self-support.
Taylor coming home also creates many other care issues. We do not own a handicap accessible home or vehicle, nor do we have access to the necessary medical equipment, community supports/services, or in-home nursing care required.
As an older than average lieutenant, mother of three children, and nurse, I am quite adept at finding solutions. But, after more than two years of advocacy, I am left feeling exhausted, alone, and forgotten. Despite my continued efforts, as well as those of my command and the agencies tasked with assisting families of children with complex medical needs, we’ve yet to resolve the ongoing issue of Taylor’s dependency.
Military families with incapacitated and medically complex children need long-term dependency solutions. If you are a family facing the same issues, I urge you to make your voice heard. Only by telling our stories and shedding light on the problem will we draw the necessary attention to this issue.
Did you know?
- Dependency determinations are processed differently depending on your branch of service.
- Tricare eligibility for college students can be extended up to age 23.
- Adult children who have “aged out” of regular Tricare coverage may qualify to purchase Tricare Young Adult.
- A service member’s parent or parent-in-law can be granted secondary dependency with no age restriction, allowing them access to care in military hospitals and clinics as well as the opportunity to enroll in Tricare Plus.
Yet we cannot find a solution for the most vulnerable among us?