My family is moving from Texas to Oregon this month. Many people have asked if we're moving to seek better care for my son, Charlie. The short answer is 'yes'. I've been trying for weeks to write this post. Its not that I don't know what to say. Its that I don't know how to say it or how much of our story to include. But yesterday my son was denied Medicaid by the state of Texas for 2018. And now I'm ready to write.
CHARLIE NEEDS STUFF
You can read all about Charlie's birth story HERE. But all you really need to know for the purposes of this post is that my kid has many special needs - Craniosynostosis, Stroke, Cerebral Palsy and Epilepsy chief among them. This means that we need wheelchairs, gait trainers, AFO leg braces, and monthly prescriptions. There are also costs associated with his incontinence, restrictive diet, and inability to feed himself. Blah, blah, blah...
After sitting for six years on what Texas calls a Medicaid "interest list", Charlie was finally awarded Medicaid to help us cover the astronomical costs of his medical care. This is a good time to tell you that our family has insurance through my husband's university job. Medicaid was (and is) our secondary insurance.
THE REALITY OF MEDICAID
I was thrilled when Charlie began to receive Medicaid because I thought it meant we would not have to spend over half of our take-home pay for Charlie's many therapies. We spent our first year on the program figuring out how the system worked. Texas Medicaid was bending under the heavy weight of a 600 million dollar cut from 2015. Health professionals across the board were telling us that services were shrinking and that many of Charlie's needs would not be met. Our second year on the program, Texas state senators voted to cut the budget again - this time by 2.4 billion dollars.
HAULING MY COOKIES TO THE STATE CAPITAL
Fearful of what these cuts might mean for my son, I attended a budget hearing at the state capitol in February 2017 to tell them about Charlie and to beg that they stop cutting funding for these much needed programs. After listening to over ten hours of testimony and offering my own, I understood that my senators didn't give a rat's ass about my kid. They also weren't interested in paying for therapies that could greatly improve my son's quality of life. And while they were at it, they would also cut funding for CPS and our foster care system. I can't quite explain the special kind of pain I felt that day. The wealthy state of Texas was saving dollars on the backs of its most vulnerable citizens - medically fragile children and wards of the state. I was disgusted.
1 in 3 Texas children rely on Medicaid. ONE in THREE. Deep cuts to the state budget for Medicaid caused hospital closings, and the closure of many therapy clinics. With fewer places to choose from, and fewer places even taking Medicaid, thousands of kids were left without much needed therapies. Charlie was one of those kids. We were back to paying out of pocket for his therapy.
Yesterday, just two days before Thanksgiving, we were notified that Charlie has been denied Medicaid for 2018. The reason? He hasn't had a major medical event this year. And why is that? Its because we finally have the resources to meet most of his needs. Medicaid, for all its faults, is working. Charlie has been stable. Its completely infuriating.
Once again, I'm in a situation that requires I spend hours and hours on the phone with the state, hours filling out requests for letters of medical necessity from doctors, and slogging through yet another appeals process. This kind of work is a second job - one that doesn't pay. I lose money and time.
When the state of Texas denies a Medicaid renewal application for a medically fragile child, they are making a bet. The bet is that the family doesn't have the resources to appeal - that they don't have the hours to spend, or the ability to navigate the system, or a vehicle to pick up copies of medical records, or access to a fax machine to send letters from doctors and appeal application materials. They are betting that the families are tired and otherwise engaged with the work of caring for a child with special needs. And guess what? That's a good bet. Most of the families who have medically fragile children on Medicaid cannot jump all of these hoops. The state wins. Parents stop fighting. The state doesn't have to pay. And that was their plan from the beginning because they just cut billions of dollars from the budget.
So while there are many reasons we're headed to Oregon, one of them is that I'm tired of fighting the state of Texas. Texas lawmakers have made their position clear to me. Don't be female. Don't be disabled. Don't be an immigrant. Don't be a person of color. Don't be gay. Don't be gender-queer. And don't be the mother of any of the above. Just be a good little wage-slave consumer and shut up.
Even with this Medicaid saga, I have to say that we've met great people here in the lone star state. And my husband has loved his university job. But after 7 years of fighting, advocating, begging, and scraping for Charlie, its time to move. We have no family here in Texas, which means that for me, every moment spent outside the walls of my home is a 'pay-to-play' situation.
I'm tired. And I need help. So I'm headed home. Sure - Oregon is just another state system, but at least its one that recognizes my son as a citizen. Oregon is also a Medicaid expansion state. And regardless of the level of support we get from the state, we'll have our family at our side.
It is the honor of my life to be Charlie's mother. I will never stop fighting for him. But my hope is that this move will allow me to spend more time being his mother and less time being his appeals processor.