Accessing your teen’s health information can become an unexpected challenge for military families when a child turns 13. This article continues Becca Kofonow’s story of navigating healthcare and support for her neurodivergent children. Read her first article, “ADHD Masking in Girls: The Cost of Being Fine.”
“Not Me” Did It
Along with mood swings, puberty, and middle school drama comes a surprise for military families. When your child turns 13, you may lose access to much of their medical information. As the parent of three children with special healthcare needs living overseas in Japan, I spend a great deal of my time coordinating medical care. This may not be news to anyone who has a teenager in the Defense Health Agency system (DHA), but it is to us, as we just got our first teenager.
Anyone who has ever asked a neurodivergent teenager if they took their medication knows the response often starts with a long pause and ends with, “I think so?” Yet the system expects many of these same teenagers, including those with neurological impairments or developmental delays, to manage access to their health information independently.
For families like mine who care for children with complex medical needs, losing access to electronic information such as medication, laboratory results, and medical history is more than an inconvenience. It is a patient safety issue. And when a parent brings it up to the various entities at the base clinic (MTF), suddenly “Not Me” is in charge. In our family, “Not Me” is the imaginary culprit everyone likes to blame when there’s a mess. That’s exactly how my search for answers about my son’s medical records has felt, with the same pattern of finger-pointing.
When MHS GENESIS Limits Parent Access
Despite significant cognitive challenges, MHS GENESIS deems my son a “mature minor,” solely responsible for managing much of his medical information in person or on the phone. The problem is not simply that parents lose portal access at age 13. It is that military families receive inconsistent guidance, inconsistent access, and no clear path for obtaining urgent information needed to manage their children’s care.
For example, my son’s doctor prescribed him a new medication on a Friday. By the next morning, no one could remember the exact dosage instructions. Our MTF stopped providing clinical printouts at the end of appointments to comply with the new administration’s paper waste reduction efforts. The pharmacy does not offer a fully automated system or an option to speak with someone unless you are in the emergency room. Because we could not access the clinical notes through MHS GENESIS, we had no way to verify the dosage instructions. We spent the entire weekend waiting for the clinic to reopen on Monday before starting the much-needed medication.
Why Parents Lose Access to Teen Medical Records
Over several months, I contacted multiple offices across the military healthcare system searching for answers about accessing my teen’s health information. Each referred me somewhere else. After weeks of phone calls, emails, and dead ends, I found myself back where I started: relying on our already overburdened pediatric clinic for urgent information about my son’s care. Whether we were traveling and needed emergency care, registering for school, or trying to refill a prescription, we had no way to access important medical information unless we already had it.
When I asked for help to prevent this issue from happening again, the Peds triage nurse sent me the now-familiar DHA memo explaining that the HIPAA Privacy Rule restricts parental access to certain information, such as “sexual health and mental health information.” The memo also advised us to call or send a message whenever we need access to our child’s information. I wholeheartedly agree that the system should protect these sensitive areas. However, the memo doesn’t address access to information such as medications, appointments, medical history, or radiology results. HIPAA provides important privacy protections, but it does not automatically prevent parents from accessing all medical information for their minor children.
Health and Human Services recently acknowledged in a memo that parents may be improperly denied access to their minor children’s medical records. While this privacy framework makes sense for sensitive services that minors can independently consent to, it becomes far more complicated for children with developmental or cognitive disabilities who cannot independently manage their healthcare. The issue becomes even more complex for military families living overseas, where state regulations may not apply.
Inconsistency is Constant
Pediatrics said to ask TRICARE, and TRICARE sent us to Outpatient Records. Records said to call MHS GENESIS, and MHS GENESIS pointed elsewhere. Once again, it seemed “Not Me” was handling the case. When I called the 1-800 number, the person I spoke to curtly reminded me that although I was responsible for our children’s medical care, I was not the active duty member/sponsor, so I could not make any changes to their information. My spouse called and received the same response. They must follow HIPAA; they are not responsible for the issues, and they cannot help us.
What was even more surprising was the lack of consistency. Some children had access to local patient portals, while others had no electronic access to their records at all between ages 13 and 18. Many parents described relying on phone calls, secure messages, or provider intervention whenever they needed clarification on orders, laboratory results, or medical records. Some families must obtain signatures from their children with severe developmental disabilities to complete proxy forms. The inconsistency raises important questions about privacy, legal adulthood, and developmental maturity.
We Are Not Alone
After hearing from another military parent who had received proxy access for their neurodivergent teen’s health information, I tried to follow the same process. At Outpatient Records, I was given the DD2870. I checked back after four weeks and learned it was not the correct process for obtaining proxy access. They recommended I call the MHS Genesis 24/7 line to file a grievance (and encourage others to do the same), but said in loco parentis would likely be denied anyway. Even staff members acknowledged the problem, but no one could provide a workable solution.
When I reached out to an Exceptional Family Member Program (EFMP) support group, I discovered that our family’s experience was far from unique. Hundreds of military families with high needs children reported similar difficulties accessing their teenagers’ medical information through MHS Genesis. Many had gone round after round with the same offices I had, often with the same result. According to many EFMP support group members, families are routinely told these privacy restrictions cannot be adjusted to account for a child’s cognitive or developmental limitations.
Accessing Your Teen’s Health Information Through MHS GENESIS
Hundreds of military parents aren’t the only ones concerned. In 2023, Senators Warren and Blumenthal wrote to the then Secretary of Defense, outlining excessive delays and concerns about accessing health information via MHS Genesis and urgently calling on the DoW to correct these issues for active duty, MEPS (aka recruiting medical), veterans, and military dependents. DHA has highlighted MHS Genesis’s efficiency, advanced capabilities, and ongoing investments in artificial intelligence. For a system that promises better access to healthcare information, it’s hard to understand why parents are waiting days to get urgent information about their own children’s care.
Another major flaw is that the DS Logon platform used for all military service applications, including MHS Genesis, does not allow those under 18 to register for a login, which would be an excellent workaround for this issue. But since the DS Logon platform controls most military applications, we cannot help our child access their online health information for the next five years.
A Privacy, Policy, or Software Problem?
The more people I spoke with, the less clear it became whether this was a privacy issue, a policy issue, or a software issue. Several staff members suggested the system wasn’t built to give parents access to routine medical information while protecting only legally confidential information.
Whether the root cause is policy, software limitations, or a combination of both, the result is the same: military families caring for minor children with complex medical needs are being forced to navigate inconsistent procedures and delayed access to information that is essential for coordinating their care.
And as I previously mentioned, legalities become even less clear for families stationed overseas. OCONUS personnel operate under federal law, host-nation law, and Status of Forces Agreements rather than any single state’s regulations. Yet every explanation I received ultimately pointed back to HIPAA and state-mandated privacy laws, despite their focus on protecting very specific categories of sensitive information rather than broadly restricting much of parental access.
While many individuals were sympathetic and acknowledged the problem, none could provide a solution or help those of us unable to access minor dependent online medical information promptly.
What Military Families Can Do
If you are a parent/caregiver struggling to access your dependent’s electronic health records via MHS Genesis, you can send an ICE comment directly to DHA via ice.disa.mil, requesting a response to encourage action.
The newly formed White House Military Spouse Commission is requesting that all military spouses with concerns send pertinent information to them.
You can write to your congressional representatives explaining this issue and how it affects hundreds of military families worldwide, including your own. To find your representatives, visit Congress.gov.
You can also file a formal grievance with TRICARE/DHA through your local Beneficiary Counseling and Assistance Coordinator (BCAC) or through the DHA Privacy and Civil Liberties Office.
The solution is not to eliminate privacy protections for teenagers. Teenagers deserve privacy, and parents of children with disabilities need a reliable process for accessing their teen’s health information when it is necessary to keep them healthy and safe. DHA should provide an inclusive process that allows both realities to exist at the same time. Until then, many military families will continue to be responsible for managing their children’s healthcare while being locked out of the information needed to do it.
How to File a Formal Grievance
To file a formal grievance, there are two channels:
Channel 1: The TRICARE / DHA Grievance Process
This is the standard route for addressing issues with military healthcare delivery, administrative policies, or system access.
Step 1: Contact your local BCAC. Every MTF has a dedicated BCAC. They are trained to handle systemic portal issues and escalate them to the DHA.
Step 2: Submit a formal written grievance. You can submit your complaint in writing directly to your regional TRICARE contractor or your MTF’s Patient Administration office. For families stationed overseas in the Pacific, grievances are routed through International SOS / TRICARE Overseas.
What to include: State clearly that the MHS GENESIS portal configuration severely restricts your ability to coordinate care for your dependent safely and causes an undue administrative burden by forcing manual, paper-based workflows.
Channel 2: The DHA Privacy and Civil Liberties Office
Because the digital block is explicitly driven by the DoW’s interpretation of federal HIPAA and Privacy Act rules, you can file a complaint directly with the office that regulates military health privacy.
Step 1: Access the official DHA Health Information Privacy Complaint Form.
Step 2: Submit to the Privacy Office. You can mail or email the completed form directly to the Defense Health Agency Privacy and Civil Liberties Office.
In your written statement, note that while you recognize the intent to protect minor privacy, the blanket digital restriction functions as a barrier to parental access to general, non-confidential medical records (such as routine physicals or pediatric dental cleanings) where no state or host-nation minor consent applies.
Moving Forward
Military families should not have to choose between protecting a teenager’s privacy and having the information they need to coordinate their child’s care. Families who encounter these barriers can use the resources above to raise concerns and advocate for clearer, more consistent access. By continuing to share these experiences, military families can help bring attention to a system that needs to work better for the families it serves.
About the Author – Becca Kofonow
Becca Kofonow has been an early childhood and elementary educator for over two decades. She also runs many military community peer support groups in Japan, including several that assist military- connected children and parents. Currently, she teaches at a DODEA school in Japan and volunteers for the school and base community.
She is also a certified Military Lactation Counselor, a Naval Service Family Line – COMPASS Mentor, a certified Mental Health First Responder, and a founding member of The Beyond Sleep Training Project. She enjoys traveling and experiencing the world with her spouse and children and is an avid reader, Japanese convenience store, and vending machine aficionado.
Becca is a former military child and has been married to a USN sailor (also a military child) for nearly 20 years. They now have three military children of their own, ages 13, 11, and 6. Her oldest was diagnosed with ADHD in 2018, which began her journey into the world of neurodivergence. She discovered her own ADHD after her son was diagnosed, and this led to her passion for helping other neurodivergent families struggling with visibility and acceptance.
Leave a Reply