My first child, Kaitlyn, was born in 1996, and we soon learned she was missing part of her brain and the remainder was malformed. Agenesis of the corpus callosum, diffuse pachygyria and colpocephaly — these three obscure words are now part of my regular vocabulary. She was later also diagnosed with epilepsy and scoliosis.
Kaitlyn is profoundly developmentally delayed, functioning physically much like an infant. Cognitively she seems to comprehend at a higher level, but she is nonverbal so we don’t know exactly. That's the sad part. The good part is that she is a blessing, with a smile that will warm your heart.
Being a military wife is hard enough. Add a special needs child and it can often seem impossible.
We usually never receive the Medicaid waiver that would give us some much needed respite care. We are all entitled to it as is every citizen, but due to our constant moving, all our children do is sit on the wait lists until we move and start at the bottom of the list in our new state.
My least favorite part of my life as a Navy wife? TRICARE — the military healthcare program. Our most recent battle involves coverage of Kaitlyn’s physical therapy — the only thing that is keeping her scoliosis from becoming life threatening. If it does, she will require life-altering, invasive surgery that may or may not work.
TRICARE paid for her therapy for several years before abruptly denying services because her physical therapist was using a horse for a tool rather than a ball. But the horse is the only tool that works for Kaitlyn, and it even costs less than other therapy tools. So this is not about expanded coverage or increased costs.
To make a very long story short, TRICARE denied coverage and demanded that we repay thousands of dollars for previously paid therapy. After two years of appeals, an administrative law judge granted Kaitlyn her benefits, only to have the Department of Defense disregard the judge’s decision and continue to deny coverage.
My husband was promised healthcare for his family when he promised to serve his country. He has never wavered on his end of this agreement in 24 years — years that have been a sacrifice for our family.
Kaitlyn is receiving physical therapy that her doctor prescribed as necessary. Physical therapy is a covered service under TRICARE, and the law states any physical therapy that is medically necessary, or proven to work, will be covered. The government's own judge has ruled that TRICARE covers this, and TRICARE refuses to honor its own court's decision.
While my husband is a captain, with the financial resources to pursue these actions, many military families in situations similar to ours aren’t so fortunate.
Thanks to a bipartisan group of congressmen we have made progress towards correcting this problem for the many military families who need this coverage. They have recently sponsored Kaitlyn’s Law: H.R. 1705, to clarify physical therapy benefits under TRICARE.
Kaitlyn’s Law will ensure that TRICAREcovers medically necessary, doctor-prescribed physical therapy for all military families, regardless of what tool a therapist uses. Our military family members have earned these benefits.The least the government can do is keep that promise to families like mine who have already sacrificed so much.
Samuels is a Navy wife, full time mom of three and founder of Kaitlyn’s Foundation (www.kaitlynsfoundation.org;). She resides with her family in Fort Worth, Texas.