Jacob’s Story: Looking Beyond the Military for Health Care

4-12_Sorell_Family_2.jpgPreviously, Holly shared her son Jacob’s diagnosis with a rare form of epilepsy and the lessons her family learned navigating the military insurance program known as TRICARE. Below, Holly shares her concerns with the current system as the family looks towards an eventual end to their military coverage.

Today, we keep a majority of our care at Walter Reed National Medical Center. The subspecialty department is well-acquainted with Jacob and our entire family — we have a medical family there and support while we go through many uncertain work-ups and unknown future outcomes.

When we need durable medical equipment, we go to seating clinic. A nurse case manager, physiatrists, physical and occupational therapists, speech pathologists and vendors are present to help us specifically choose the equipment that our son needs. It’s fully covered with a nominal co-pay. Without this equipment and all of this support, I would be completely floundering. I am convinced Jacob is now at his fullest potential for him as a result of TRICARE’s approval for equipment.

While I cannot complain about the TRICARE provisions that have been abundantly supplied to our family, one area that needs to be modified is the Exceptional Family Member Program (EFMP), which alerts the military branches on where a service member like my husband can adequately be stationed. TRICARE’s websites for EFMP families are all managed by different contractors who do not always keep the sites updated.

There may be an appearance that services are easily accessible, but experientially there are wrong phone numbers, out-of-date services, or partial and incorrect information. The coordination of services is often not swiftly met or found by even the most eager advocate of their child. While the military does their best to keep the family together at a duty station, the number one priority is serving the needs of the military. At times, the complications of having a child with medical complexity do cause hardship to the service member or prevent them from moving up in their careers.

EFMP issues do cause us issues today, but we also spend a lot of time worrying about tomorrow. As we prepare to transition from TRICARE services to civilian services, we have encountered issues that desperately need to be addressed. For military families looking towards an eventual inactive status, others’ advice to go on state Medicaid wait lists creates complex challenges.

4-12_Sorell_Family_1.jpgOur family currently resides in Maryland — there is an average wait of eight years to get on some Medicaid waivers. Medicaid often covers more than TRICARE. However, when we become civilians, what happens when our child with complex medical needs drastically increases our health care costs in the face of this wait time? How will we pay these exorbitant out of pocket expenses?

How would any family like us? The challenges are still more complex for families who move while on active duty — should they get on multiple Medicaid waitlists in various states? This is a huge public health and social issue that needs be addressed.

As a result of my son’s medical condition and the fact that we may or may not be able to stay on active duty after 2019, I went back to school online to get my Master’s in nursing. Thankfully, there are online programs for parents like myself who struggle to find affordable childcare for a special needs child. Our life includes many challenges, and yet my hope is to be able to advocate as a nurse for a vulnerable patient population. I want to turn these hardships into proactive action in service of those in similar situations.

We are forever grateful to the neurologist who saved my son and to TRICARE for allowing my husband to serve our country knowing that his son’s health care would be covered.

Our journey is not easy. Jacob has severe brain damage, cannot walk without assistance, uses a wheelchair, has complex communication needs, and the list goes on. But a quote from my brother-in-law resonates in our lives: we live our lives forward and understand circumstances backwards. While this life on earth does not always live up to what we dream of, the stories and advocacy we’ve been able to promote for others in their health care challenges far exceed our own circumstances.

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