To mark National Family Caregivers Month in November, Allison G., a California mother of a 7-year-old with a rare chromosomal disorder, shares what caregiving means to her. (For family privacy, she prefers that her last name not be used.)
I learned the basics of “health insurance” speak in the years leading up to my now 7-year-old son’s diagnosis of 22q11 deletion syndrome. This chromosomal disorder has a wide range of variables, from heart defects to emotional, behavioral and psychiatric issues.
The primary effects on my son so far have been VPI or velopharyngeal insufficiency (an anatomical dysfunction of the soft palate), speech articulation issues, fine and gross motor delays, immune system deficiency, sensory issues, and anxiety. By the end of the year after his diagnosis—he was 3 at the time—I was pretty fluent in “health insurance.”
During these early years, I also learned that my role as mother and caregiver to a child with special health care needs automatically qualified me as chauffeur, case manager, care coordinator, and advocate. When it became apparent that he wasn’t developing typically, I wanted to dedicate every moment of my spare time towards my son’s progress.
In addition to the usual work–parenting balance, the complex maze of the medical system combined with our health insurance company policies loomed before our family: research, specialist referrals, therapists, assessments, examinations, second opinions, surgery, pre-authorizations, rejections, appeals, more research, more assessments, more specialists, and the list goes on.
I learned that my role as caregiver meant not only tending to my son’s health care needs, but also spending hours on the phone with billing department staff and health insurance representatives, racing to and from therapy and doctor appointments, as well as following up on and keeping detailed records of every medical activity. I constantly reminded myself that my son was (and still is) at the center of this maze.
Throughout his various treatments and therapies, we are very lucky to have celebrated many successes—both great and small—as we have watched him develop and progress.
Receiving insurance authorization or reimbursement for treatments after a long drawn out battle, while not as rewarding, has felt pretty damn good, too. Years later, my “health insurance” speak is still improving and I am still learning how to navigate this maze.
Our family recently changed insurance carriers, and many unknowns regarding our son’s condition lay ahead. With more knowledge, resources, and resilience, we now brace ourselves for whatever awaits us around the next corner.
The Lucile Packard Foundation for Children's Health has launched The California Advocacy Network for Children with Special Health Care Needs to engage individuals and organizations in advocating for a better system of care for these most vulnerable children. Join the network or sign up for our newsletter. The foundation also supports research, policy and advocacy efforts to improve care for children with special health care needs.