Rosie just turned 17 last week and we obviously don't want to rush the clock, but we're looking ahead to what happens when she turns 18 because it's a big deal. If you have a healthy child, you may not be giving this milestone a second glance, but honestly you need to as well. Why? At 18, school no longer has to let you see their records and even more scary? If your child gets admitted to the hospital, they don't have to give you any information.
Under the Health Information Portability and Accountability Act (HIPAA), when your child turns 18, you are no longer considered to be their legal representative. So what does that mean? Your child's record between him and his health care provider. You no longer have direct access to speak with physicians and get information. Additionally, all medical bills are directed to your teenager now that they're majority age. So, whether you have a chronically ill child or a perfectly healthy one, it's important to know about these changes.
I started preparing Rosie for her 18th birthday last year. I noticed during a lengthy hospital stay that none of the doctors were talking to her, even though she was perfectly capable of answering their questions. While I understand that it's a children's hospital and it's probably common for them to address parents only, it was time for them to speak directly with her and I challenged them to do so. It was the first time that I realized that there will be challenges when she turns 18, so we better prepare her for them now.
Here's how we've prepped our child for when she turns 18
Memorizing drug allergies and interactions– My daughter has had adverse reactions to a number of medications, so it's important that she can not only recite what they all are, she needs to know about the medications in case someone tries one in the same family. We don't want her to be in an emergent situation with us not around and inadvertently put herself in danger. At appointments, she now recites the list to the nurse.
A comprehensive list of medications and doses– While the computer at our children's hospital is up-to-date, we can't rely on that information. She carries a card with all of her medications so she's clear about the timing and dosages. She's also required to go over these herself with the nurse at every appointment.
Talking about medical history and symptoms– Starting last year, we have all her providers address her as much as possible so she can get used to talking about her health history. I am still having to fill in a lot of the details, but the more comfortable she gets, the less she'll need me. We've shown her how to navigate the hospital portal, so she can see her tests and appointments too. On the list for this year, teaching her how to obtain her medical records if she needs them.
Having her open the bills that already come in her name– At 18, all the billing switches to her, even though we'll continue to pay. It's time to start having the conversation about insurance so she understands co-pays, coinsurance and what we actually owe. While we don't expect her to take the financial responsibility on until she's graduated from college, she needs to understand how it all works because it's complicated.
Navigating the school's websites and communicating with teachers– While I still have to call her into school when she's sick, this year she is 100% responsible to get all her missed work and tell her teachers what's going on. She'll be a senior at 18 and technically, they don't have to speak with me at all. She needs to learn how to navigate the system.
Holding her own 504 planning meeting– When we worked out Rosie's schedule this year, I had the assistant principal and counselor speak with her directly. When we do her 504 planning meeting in the fall, I will have them address her as well. She needs to learn how to communicate the accommodations she needs and work with her doctor to get the letters if needed.
Finally, I would be remiss if I didn't mention that we plan to get a power of attorney and durable medical power of attorney drawn up before her birthday. While we plan to allow her to make her own decisions, we know that school, doctors and hospitals no longer have to speak with us. It's important that they do in her last year of high school and honestly, on the medical side, we'll have it on file with all her physicians right away. That way, we'll continue to be involved in her health care and financial well-being as long as she needs us.