Two years ago today, I wrote an op-ed piece for the Texas Tribune about my son Charlie and our journey with Medicaid for medically fragile children in the Lone Star State. The sub-par coverage we received from Texas was one of our chief reasons for leaving. The piece was published as a result of a post I penned here on my personal blog called Moving, Medicaid, and Motherhood.
Here’s a little taste:
“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 through 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.”
Our family has been living in Oregon now for two years and I’m ready to report back about our experience of arriving in a new place, applying for care, enrolling in state-run programs, receiving medicaid through the Oregon Health Plan, and re-enrolling. For those of you who told me that care was the same in every state and that medicaid expansion states weren’t any better than those that refused money as part of the Affordable Care Act, this might be a disappointing read.
The state of Oregon is committed to medically fragile children. I know this because of how our family was treated by the state and how they responded to our application. The system is by no means perfect but it is humane and fairly easy to navigate, especially when compared with our multi-step and sometimes dead-end process in Texas. Oregon’s goal is to get your child the care they need.
Here in Oregon, our enrollment process was completed either online or by talking to a real human in real time. I didn’t have to track down hard copies of paperwork, get things notarized, or personally fax documents from specialist to specialist for signatures as I did in Texas.
Everyone we have talked to through the Oregon Health plan has answered our questions in a straightforward manner and when needed, referred us (in real time by connecting our call) to another real human who could help us out. After a few days, Charlie was approved and the system was set in motion to get a local pediatrician who could attend to his special needs and refer us to specialists in the area.
The process of enrolling for Medicaid through Oregon Health was a breeze compared to the 6-year waiting list that Charlie sat on in Texas. Granted, we are a computer savvy family with access to previous medical records. (But this was also the case for us in Texas.)
Our family lives in a very rural location. The nearest clinic is an hour away and the nearest hospital is and hour and 45 minutes away. Most of our specialists are in Boise, a nearly a three hour drive. When we moved here, many family members were worried about our remoteness as it pertains to Charlie’s maintenance and care. Rest assured that our new medical team is all within a reasonable distance. (It used to take me an hour and a half to get to the Children’s Hospital in Dallas traffic, so this isn’t much different. Just fewer cars and a prettier drive.)
As a side note, our family has access to emergency services via helicopter that can get Charlie to urgent care in Boise in about 30 minutes. We pay a little extra for that coverage, but not much.
Once we were approved for Oregon Health, Charlie was connected to a pediatrician in La Grande, OR. After seeing her, she connected us with a pediatric neurologist in Boise. We were initially worried that Charlie’s care wouldn’t follow him across the state line from Oregon to Idaho, even though they are our closest specialized care. In Texas, even though we were near the Oklahoma border, Charlie was not covered in another state. Oregon has made provisions for those who live on the borders and medical care follows the patient to their closest care-giver; in our case Boise, Idaho.
Quality of Care
Our care in both Oregon and Idaho has been excellent. The doctors and nursing staff are thoughtful, personable, informed, and helpful. We’ve also received great therapy services in Eastern Oregon through the school. Charlie sees a physical therapist, an occupational therapist, and a speech therapist through our very rural school system. They drive out from the closest town to see him, manage his therapy, and train para-professionals who are on site. Everyone has been proactive and attentive.
In Texas, re-enrollment was always terrifying. Because of their massive budget cuts in 2015 and again in 2017, the state was always leaving medically fragile children by the wayside. Kids like Charlie who had coverage, could find themselves kicked off due to changes in eligibility rules.
This October, we re-enrolled Charlie. He was approved online in real time. The best part was that his re-enrollment form already had last year’s information entered into each section. The form asked for updates, rather than an entirely new application. (Not so in Texas.)
We did run into a little snag. There was a discrepancy between some of our income numbers and we were unable to progress through the application without assistance. We hopped on the phone and talked with an enrollment specialist who walked us through our income verification in real time. He was eager to get Charlie approved right away and gave us some helpful follow-up information. Within 48 hours, the application was complete and Charlie’s new healthcare card was in the mail.
State-run health care is not just about the money. Its about intent. If your goal is to get care to your state’s most fragile citizens, families FEEL that. If your goal is to find any and every reason to deny access to care for your most vulnerable populations, families FEEL that. They feel it in their pocketbook, in their wait-times, in their commute time, in their personal interactions with care-givers, and most importantly, in their aspirational capacity. And this makes an enormous difference in their quality of life. It is a game changer for a family like ours.
Again, I know that the system isn’t perfect. I also know that Texas has far more people on Medicaid than Oregon (although the ratio of state population to those covered by Medicaid is the same). I also know that there are folks having a hard time navigating the Oregon Health website and enrollment process. Maybe it seems great because Texas was so awful. Whatever the reason, we are very happy with our choice to move. Charlie has what he needs, which means that I’m free to just be his Mama again.