Having lost a 41-year son, a decorated and distinguished Army Special Force Soldier, to post-traumatic stress issues, I am advocating for Congress to change legislation concerning the Health Insurance Portability and Accountability Act (HIPAA) regulations for immediate family members. I want to see an independent ombudsman established as well.
We saw how my son, James, was suffering from a military and Veterans Administration process that denied his wife and his parents’ access to the treatment plan given to him after his retirement. James’ providers denied all of us information because of their interpretation of the HIPAA regulation. We saw how his military doctors failed to assess, identify, and treat his diagnosed mental and physical care due to a lack of a planned medical care continuum. When he was transferred to the VA after his discharge from active duty, the trend continued.
As a Navy case registered nurse case manager, I helped veterans with what is known as a medical evaluation board. I coordinated the transfer of care from my military hospital in Virginia to worldwide VA facilities I had seen firsthand how a well-coordinated medical plan had helped my hospital’s patients transfer to their new homes. When they mustered out of the service, my team and I set up their first appointment with a VA facility.
James was not given the same discharge process as the sailors I helped. He didn’t have a care manager nor was there a handoff with a plan given to the VA. when he transferred from military facilities in the District of Columbia to Florida.
Upon return from a recent long deployment prior to his retirement, James told his wife that he had been diagnosed with post-traumatic stress disorder (PTSD), a traumatic brain injury (TBI), and a major depressive disorder (MDD) among other diagnoses by military medical providers. He said that the military providers whom he spoke with, would just order him different pills to take to help alleviate his symptoms. He reported that the pills made him feel “loopy, goofy.” He would notify whatever provider he saw on return visits about how the drugs made him feel. As his providers were rarely the same, they would give him more pills to take. His reply -was “they don’t work”. His sleep hygiene, mental alertness, and personality were being affected by these medications.
About 2-3 years ago, my husband and I noticed subtle changes in James’ behavior, general well-being, and moods. He would become very quiet, sullen and would self-isolate frequently. He was often short-tempered with his wife and children. He often woke up at 3 am. As he was actively having nightmares and screaming fits. He rarely engaged with activities and people he enjoyed having around him. We asked him what the problem was and why he was acting so differently toward others.
When I called his VA doctors and medical support staff about the care plan for James, they used their HIPAA regulation legal interpretation as a way to deny me access or to provide me with information on his medications and treatment plan.
Any attempt for me to ask his providers about ancillary treatment such as neuro psych testing or other alternative forms of therapy was denied. When I asked his doctors about my son’s care plan, I was told that I wasn’t authorized to get that information.
In one case, I found an alternative facility called Warrior’s Heart that treated PTSD and other addictive disorders. This facility had worked with other veterans like my son to help them overcome their medical and psychological issues. However, one VA official denied him the care because she had a bed for him at her Biloxi, MS facility. The medical director would not authorize my son’s participation in the program.
With his TBI conditions, James was not able to challenge his military and then VA doctors on his treatment plan. Due to their HIPAA regulation interpretation, his wife, my husband, and I could not assist him with discussing a consistent approach to helping him.
As another Veterans Day approaches, I am advocating for Congress to change the laws concerning the treatment of veterans facing TBI and PTSD-related symptoms. I am hoping that James’ treatment would motivate them to want to change the law concerning HIPAA and provide information to parents, a spouse, or another authorized guardian.
I would also want to see every military professional who is undergoing treatment have a consistent health plan that takes someone from active duty to a community treatment plan. For some, a VA facility can provide those services. However, in many cases, some better options exist to care for people like James.
When one doctor makes unneeded and significant changes to medical treatment, without the consent of the veteran or his designated family representative, Congress should authorize an independent commission to create an accredited veteran service advocate program. Similar to the veterans ‘service organizations set up by organizations such as the DAV, American Legion, and the VFW, these people could intervene to help people like James when a VA or DHA bureaucrat denies someone treatment or makes unneeded changes to his medical treatment plan.
Military professionals like my son deserve medical treatment to take care of their injuries. When they can’t share some of their issues due to PTSD or TBI, they should have a family member assigned to assist them. When this family protector is not available, having a qualified third-party counselor from the American Legion, Veterans of Foreign Wars or other organizations should have the authority to assist veterans like my son when needed.
Kathy Pokorny served as a civilian Navy nurse for nearly 18 years, helping many of her patients with their transition from military service to care within the VA system.