Medicaid and its Role for Children and Youth with Special Health Care Needs

Being Matthew (age 14) and Laura’s (age 11) mom has been a remarkably life-expanding experience. One of the unexpected bonuses was a crash course followed by endless emergence learning about health care financing. When I was pregnant with Matthew, my husband and I felt well-prepared to meet the financial responsibilities of parenthood: we had college educations, owned a home, were blissfully without consumer debt and, via my husband’s job as a high school history teacher, had great private insurance. Six months later, as Matthew spent his first Christmas in our local children’s hospital, our world was very different. Our son’s complex medical needs (which we later learned were caused by a mitochondrial disorder) were not entirely covered by our health insurance, we had a staggering amount of medical debt, and even when our medical cost swallowed a huge portion of our income we did not qualify for the majority of safety net programs. For several years our young family struggled to meet our children’s needs, often making painful choices about how long we could safely wait for doctors visits, test and procedures. We worried about our ability to maintain our housing and often struggled to have enough money for food. And our story is not unique, the financial costs of raising a child with a special health care need are staggering, and they are carried by families already dealing with the emotional and physical demands of being caregivers, often literally a 24-hour-a-day job. For many families like mine Medicaid is a key partner in meeting those needs. When Matthew and Laura “made it” to the top of the state’s waiver waiting list, the impact was immediate and dramatic. We no longer continued to accumulate medical debt; instead, our private insurance and Medicaid met the cost. We had 15 hours per week of skilled medical attendant care that has been life-changing for our children, allowing them to access community activities such as 4-H, after-school extra-curricular programs and the library. And my husband and I have been able to redirect the energy we used on survival to working on helping our family and community thrive. I re-entered the workforce, using all of my learning about health care financing to serve other families, my husband serves as a County Councilman and we, like most American families, are connected to many activities via our children’s interests. We are happy to be a family like some many others, spending money in the economy and paying taxes back into the system, as well as volunteering, but none of that could happen without Medicaid
I share my story because it is the story of families all over America, who never expected to need Medicaid and likely didn’t understand its role in supporting children with special health care needs until it affected them directly. Unfortunately, the fact that so many Americans – including our policymakers – are not aware of the crucial role Medicaid plays for children with special health care needs means that it is at risk of being cut. I am grateful to the Georgetown University Health Policy Institute’s Center for Children and Families for providing a data-driven look at this issue. I encourage you to read and use this resource to highlight why a commitment to this funding is critical for your community, state and country. I often think about the young family who will spend this Christmas in the hospital facing staggering bills, a changed future and countless unmet needs. I know just how important Medicaid will be for all those families to come.