January 23, 2020

New State, New Healthcare, New Life

Adios, Texas

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.”

Hola, Oregon

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.)

Receiving Care

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. 

March 9, 2019


It's been a million years since I shared anything on this blog. Perhaps its because Charlie has been through some incredible transitions in the past 18 months. Or maybe its because I have been through some huge transitions as well. Either way, its been pretty quiet around here.

Charlie is 8 years old now. In December of 2017, our family moved from Dallas, TX to Halfway, OR. Its a very rural place and many of our friends and family members wondered if we'd have the right kinds of services out here to support Charlie's needs. Would there be therapists? Orthopedic specialists? Neurologists? Would he have support at school? Aides? An adequate special needs program?

Well, there was no need to worry, friends. I did my research and I knew we'd be well cared for. And our new community, our new school, and our new support team has exceeded our expectations in every way. Are there hiccups? Sure. That's true anywhere. But across the board, Charlie has everything he could possibly need.

The best news of all is that Charlie is walking most everywhere he goes now. We haven't had his wheelchair at home for months. Its stays at the school in case he needs it for long distant walks. We even took a trip to California for a week and didn't bring the chair.

Now that we've settled in and Charlie has a new routine here in Eastern Oregon, I'd like to start writing more about the day-to-day stuff. In the previous 8 years of this blog, it seems I was always writing when there was trouble or struggle. And while it was so valuable to have this line of communication with our community during those hard times, I'd like to pay it back with some of the joyful and more positive parts of life with Charlie. Because there are so many!

You'll be hearing from me again soon, but until then, thank you.

Just... Thank you.

August 4, 2017

Charlie Turns 7

It's been another impressive year for Charlie Fighting Bear. He completed the 1st grade, had some medical help from the Medicaid program, and best of all began walking with AFO leg braces! His vocabulary has been steadily improving (he's now using two word sentences) and he's learned to use an iPad. Another huge bonus is that he has remained mostly seizure free. Like we said, its been a big year.


February 14, 2017

Charlie is WALKING

Charlie has been making huge gains this winter. The biggest change has been his dexterity and ease with his gait trainer - a type of walker that Charlie uses to walk upright. Charlie's original stroke caused severe damage to his corpus callosum, the part of the brain that assists in balance and communication between the brain's two hemispheres. This rendered Charlie unable to walk. In fact, most of our doctors were unsure if Charlie would ever be able to walker. 

But this week, Charlie proved us all wrong. Not only did he take multiple steps in free air with only the use of this leg braces, but he took 45 steps! And there's no stopping him now. Charlie is ready for more more more! Take a look...

September 12, 2016

Reach, Charlie, Reach

This month, Charlie discovered that he was tall enough to climb up to the kitchen counter and reach to the UPPER cabinets and open the door. What? Yes.

March 5, 2016

Help Charlie WIN a Bike!

Charlie has just been entered into the Great Bike GiveawayDo you remember the day you learned to ride a bike? The Great Bike Giveaway is about giving children with special needs the same feeling you had when that shiny new bike arrived at your house. The Great Bike Giveaway is a campaign started by Friendship Circle of Michigan giving children and teens with special needs an opportunity to win an adaptive bike. The Great Bike Giveaway was started in 2012 and has grown each year. In 2016 we hope to give away 600 adaptive bikes. 

Charlie has registered for the bike below. This is a bike that his parents would pedal and charlie would ride. The best part is that the chair can detach and be used as Charlie's wheel chair! Please visit Charlie's personal bike giveaway site and sign up to be an ambassador. Charlie needs 10 people (you must have a Facebook account) to be eligible to receive a bike. And here's the kicker - we have to have the first 5 signed up within the next 48 hours. So we have until Monday at noon to get five Charlie fans on the roll call. This is a great program that helps hundreds of special needs children across the country. 

Learn more or sign up to be an ambassador for Charlie HERE.

June 22, 2015

Crowd Funding for Charlie's New Ride

We've just launched a crowd funding campaign for my Charlie's handicapped accessible van!
Please watch the video below and check out all of the details HERE.



Charlie Greenman was born on August 4, 2010. It was soon discovered that he had suffered two strokes in utero. He has since been diagnosed with Cerebral Palsy and Epilepsy - all complications due to stroke.

When Charlie came into the world, doctors told us that Charlie would probably never walk or talk. As of this summer, Charlie is doing both and showing no signs of slowing down. This is due, in part, to the excellent physical and occupation therapy Charlie receives.


However, a new conundrum has come up for our family. Charlie's efforts to be mobile require all sorts of assistive equipment. We need space for both his wheelchair and his gait-trainer when we travel.

Also, Charlie has just hit 50 pounds and is in the 90th percentile for height. My husband, Jack and I carry him everywhere, lifting him in and out of wheelchairs, gait-trainer, grocery carts, chairs and cribs. But the most difficult transfers take place when we need to get Charlie through the car door and into his car seat.


A handicapped accessible van for Charlie! We have just purchased a used Toyota Sienna from a neighborhood family. There is plenty of room for his equipment, but the best part is that it's already adapted for handicapped accessibilty. A new, fully adapted van, would have cost in excess of $60,000. We feel very fortunate to have found a used one in great condition for $26,000. 

But now we're in a bind - one which so many families of special needs children find themselves. We simply do not have the financial resources to pay for both Charlie's life changing therapies and also cover the necessary cost of his handicapped accessible van.


We're hoping to raise $26,000 for Charlie's new ride. Every dollar we receive goes directly towards paying down our car loan and allows us to continue our monthly payments towards Charlie's many therapy treatments.

THANK YOU to everyone for your past, present and ongoing support of our son, Charlie! Our family could not do it without you. And a special thank you to Kenna's Kids for their amazing support for Charlie over the past three years.

Visit our Go Fund Me site to donate and share our story on social media.


Full disclosure: Go Fund Me takes 8% off the top of your donations, 
while Paypal only takes 3% in fees. Charlie's Paypal donation button is below
if you prefer that to Go Fund Me.

Thank you for all your love and support!