The day our son was born as the best and most terrifying day of my life. After going through an uneventful pregnancy and going into labor on my exact due date, our uneventful pregnancy was rocked to the core. At just three days old, our son, Noble Lett, was diagnosed with Prader-Willi Syndrome (PWS) after being taken to the neonatal intensive care unit.
We quickly learned that Noble would require a massive amount of medical care from approximately 13 different specialists to manage various physical and developmental issues, and delays. We also knew that he would require a daily injection of Human Growth Hormone – a medication with a hefty cost of approximately $1,000 a month.
The emotional, mental, and physical toll of taking care of a child with such massive medical needs was at times, too much to think about – but the financial obligation was something we realized quickly we would not be able to manage. My husband and I both worked in the non-profit world – he assisting adults with disabilities in a sheltered work program, and I working with 14-21 year olds with severe mental health conditions at a local community mental health center. While we both loved our careers, our employer plans covered very little of the things we would need to ensure Noble had adequate medical care, therapy services, and specialty medication.
Enter CHIP benefits.
Our family qualified for The Children’s Health Insurance Program (CHIP) three years ago due to the inability of our private insurance plan to address our son’s complex medical needs. CHIP benefits provide a way to receive a public health insurance plan for families who may not meet the income eligibility requirements for Medicaid, but who also could not afford or would be underinsured using a private insurance plan.
CHIP benefits has allowed our son to receive the best medical care any child could ask for. Noble attends private therapy every week and has decreased the number of specialists he sees from 13 to 4. Largely because he has had access to incredible health care professionals, he has never had an inpatient hospital stay, nor has he had any major complications of PWS. He is in the first grade and is thriving at school. He is happy, healthy, and growing.
Not only is Noble thriving, but our family is thriving as well. The money we have been able to save by having CHIP benefits has allowed us to save money for college for both Noble and his two siblings, buy our first house, and start a business. CHIP benefits, for our family, has been the difference between being stuck in a vicious cycle of poverty, and being able to advance ourselves so that we can someday be in a position to afford to move off of public insurance and create an opportunity for another family to receive desperately needed assistance.
Congress is currently facing an urgent deadline to extend CHIP funding as the September 30 funding expiration date looms. Almost nine million children – and nearly 210,000 Ohio children – receiving coverage through CHIP are depending on Congress to take action to reauthorize the program. That means passing a clean CHIP funding extension without attaching reauthorization to other health care programs – like Medicaid or the ACA – or making structural changes to the program, such as rollbacks of funding or eligibility.
There were favorable developments on CHIP funding last week, though, as the Senate Finance Committee announced a bi-partisan compromise. The legislative language on that agreement has not yet been released, but early reports indicate that the deal would extend funding for another 5 years while maintaining the enhanced federal matching rate as authorized under current law through 2019, until scaling back in 2020. While this agreement from the Senate Finance Committee is a positive step forward to ensuring CHIP funding is protected, it still have to be taken up and passed by the Senate and the House by the end of this month.
As a society, we cannot short-change our children when the economy inevitably lags. Children expect and deserve protection, regardless of their health, but especially when their health is in question. Renewing CHIP benefits is a way we, as adults, can continue to offer that protection. It’s worth it in every way to see our children thrive.
ABOUT THE AUTHOR: Crystal Lett is a Columbus, Ohio native who works as a Client Services Manager in the finance industry. She graduated Cum Laude with a degree in Political Science at The Ohio State University and is currently working on a local City Council Campaign. As a wife and mother to three kiddos, she is passionate about teaching her children to be civically engaged and often involves them in campaign work and advocacy. In her free time, she is an advocate for Save the Children Action Network – working to pass legislation providing all children access to preschool regardless of income, and increasing mother, newborn, infant, and child survival abroad. Committed to her community, Crystal also works as a Neighborhood Team Leader for the Ohio Democratic Party.