How to Raise a Health Care Self-Advocate

Once upon a time, my husband and I were our son's sole health care advocates. For the first 4 years of his life, we faced numerous life and death decisions concerning surgeries, medical tests, and treatment. After those dramatic early years his health stabilized, and our decisions about his health care were more run-of-the-mill.

When he was 15, medical tests showed another major surgery was needed. When our son, who had grown into a strong-willed, intelligent adolescent heard the news, he made clear to us and the surgeons that he expected to be part of the decision-making process. At first my husband and I were taken back by his demand. And then we did the math.

In 3 short years, our son would turn 18, at which time he would be in charge of his own health. Therefore, we made everything regarding his upcoming surgery–the pre-op tests, doctor consultations, even life and death decisions–into a self-advocacy training exercise. Here's what we learned about raising a health care self-advocate during that experience and as our son entered adulthood.

  1. Write down your child's medical history. You may remember what treatments (for physical, mental, and emotional ailments) your child received, but your child won't. Our son has no explicit memories of the tests, treatments, and 7 surgeries he went through before he was 5. So when he was a young adult, I wrote a narrative that included the hospitals where the surgeries took place, the doctors and surgeons who treated him, and anything else I could remember. That medical history equips him to be a health care self-advocate. Resources like The Caregiver's Notebook can make that process easier.
  2. Obtain a hard copy of your child's medical records. Electronic records are a wonderful thing, but they are not perfect. Some electronic record systems don't play nicely with other electronic record systems, and who wants to go to an appointment only to discover the records haven't arrived. So ask your doctors for hard copy records or go to your child's patient portal and print them out. Every time something new is added, print that out too. Make sure a set of those records travels with your child wherever he may go.
  3. Tell your child's medical stories now and again. These stories don't need to be the topic of every family gathering, but when you have the chance, tell your child the stories of hospitalizations and treatments. During the teen years, your child may say, "Mom, would you please stop!" But someday, when your child begins learning adult life lessons and in their eyes, you become much smarter, they will listen again. Then, those stories may equip him to he a better health care self-advocate.
  4. Find a doctor who treat your child in adulthood. Many of us take our children to pediatricians or pediatric _____________ (fill in the specialty area). As your child nears adulthood, discuss with that pediatric specialist who will treat your child after the 18th birthday. In some cases, the pediatrician may want to continue as your child's doctor. But if new doctors are recommended, schedule appointments with them before your child is 18 to select the one who is the best fit for your child.
  5. Train your child to be as independent as possible. Your child's level of independence depends upon his abilities, skills, and special needs. But do everything you can to maximize your child's abilities so he can self-advocate as effectively as possible. For a non-verbal child, that may require a communication device that allows him to indicate health care preferences. For a developmentally delayed child, learning to brush and floss thoroughly can minimize visits to the dentist. For another child, a parent may need to read and highlight parts of the health histories and records until the child has a good understanding of them.
  6. Assemble and complete necessary paperwork. Parents need to prepare for the future of children who will need some level of assistance as adults. A good place to start is by consulting a special needs attorney. These attorneys can help you determine which paperwork–guardianship, medical power of attorney, or special needs trust–should be prepared for your child. To locate a legitimate, trained special needs attorney in your state, use the locator at the Special Needs Trust Alliance.
  7. Slowly turn over the reins as your child approaches adulthood. As far as your child is able, allow him to make some of his health care decisions. Before appointments, remind the doctor to speak directly to your child, pose questions to him, and listen to his answers. Discuss insurance issues and processes with your child. Let him participate in to phone calls with the insurance provider. And let him ask you questions, too.

Looking back, I realize how often I clung too tightly to my role as my son's health care advocate. But instead of wishing for a do over, which isn't going to happen, I've opted for a pray over. Though my son's an independent adult, I still pray over him daily–for his physical health and health care providers, as well as for his spiritual health. And I often pray Philippians 1:6 for my son: He who began a good work in you will be faithful to perfect it in the day of Christ Jesus. After all, my son's life began in my womb decades ago, and I trust He who began it in me to complete it in Christ.