Well, today the Wise family said hello to a new bed and goodbye to two of The Baby’s teeth.
A few months ago, we started the laborious process of getting a SleepSafe bed approved through The Baby’s insurance because his crib had become unsafe. He was able to stand up in it and when he would have a drop seizure, he risked hitting his chin on the bar. We got letters from our doctor and the physical therapist, we had someone out to measure, I emailed the Durable Medical Equipment weekly for progress reports and today, the bed got delivered to our house.
Believe me when I say this bed is fancy. It has a hospital foundation so we can raise and lower the head and feet to help with his breathing. It has padding and windows. It has a channel through it for the Bipap tubing. It has wheels.
It is exactly what we needed and it was $12,000.
Medicaid paid for it.
When we adopted The Baby, we did so through an agency, because, through some complicated process that I don’t understand, it qualified the Baby for Medicaid through the age of 18, regardless of how much money we made. We knew that a Down Syndrome diagnosis would likely come with significant medical challenges (HA. WE HAD NO FUCKING IDEA) and we wanted the peace of mind to know that, regardless of our job situations, we would be able to take care of this kid the way he needed to be taken care of. When we finalized the adoption, our caseworker cautioned us to not put him on our private insurance unless we absolutely had to. Medicaid would be a life saver.
And it has been.
Through his Medicaid coverage, the Baby has gotten thousands of hours of occupational, speech, and physical therapy with high quality therapists, access to quality doctors, surgeries, leg braces, a gait trainer to help him learn to walk, an entire closet’s worth of medical supplies and medicines that keep him alive at home. Medicaid has carried us through many hospitalizations, two cancer scares, sleep studies, the LGS diagnosis. Medicaid pays for the nursing hours we get every week so that we can actually feel normal for a few hours and do things like go to Target or wash the dishes during the day.
We have a lot of things to worry about. Paying for medical care isn’t one of them.
Yesterday, The Baby had a drop seizure while standing at our TV stand and he solidly bit through his tongue and whacked his front teeth. He bled quite a bit and wasn’t quite eating or drinking normally. There was also a gap in his front teeth that hadn’t been there before. It wasn’t until we were in the waiting room of the dentist office today that I realized that one of his teeth was basically hanging on by a thread. I felt my anxiety start to rise but I took a few deep breaths. The dentist took x-rays to figure out what needed to happen and they ended up removing two teeth.
I had a lot to worry about. Paying for medical care wasn’t one of them.
I am thankful for Medicaid. Sure, there have been times of frustration where our prescription paperwork got lost in the shuffle or our PCP didn’t have a same-day sick visit appointment. There have been a handful of times where my extensive research led me to highly-recommended doctors that weren’t in network with Medicaid. Overall, though, Medicaid has been wonderful.
It really gets my goat when the same people who decry the abortion of fetuses with Down Syndrome, then turn around and vote for politicians who refuse to give healthcare to people, as if those babies with Down Syndrome won’t need significant, expensive medical care.
We are solidly upper middle class. Could we get by without Medicaid? Sure, as long as Alex stays employed, because my liberal-arts-degree-having-ass isn’t getting a job that has affordable insurance any time soon. Even then, if we had all of the same services we had now but with private insurance, we’d probably meet our deductible in the first month of the year and still have to pay out of pocket for things insurance would deny (like this bed).
Whenever we are in the hospital or seeing a new specialist or doing anything related to The Baby’s health, I am constantly thinking, “How do people with less resources do this?” Even with Medicaid, we spend a significant amount on his care and I speak English, am not afraid of being deported, know how to research and who to ask for referrals and process questions.
Maybe you’re thinking, “Well, the kids who need Medicaid qualify for it” but that’s not always true. Texas governor Greg Abbott decided against expanding Medicaid when the ACA was passed. At the time, I was helping my adult ESL students apply for and navigate the various social programs they qualified for and I cannot tell you how many of them fell right in the Medicaid gap- where they made too much money to qualify for Medicaid, but not enough to benefit from the ACA. It was heartbreaking to have to deliver that news to people who just wanted to get their medical needs taken care of. Even today, Texas has the highest number of uninsured people in the nation. 11% of Texas children do not have insurance- double the national average.
I can tell you that it would be impossible for me to work full-time because I have to do things like take my baby to the dentist for an emergency appointment to get his teeth removed that he knocked out while having an atonic seizure while watching his favorite Russian cartoon of a sentient piece of lint whose best friend is a worm. So, if Alex was, say, a public school teacher and we were in the same situation, but made too much for Medicaid and had crappy, expensive, school district healthcare, we would be up a creek, y’all.
And while we’re on the topic, parenting my children has been so very stressful. I am thankful that I have (private) insurance so I can call a psychiatrist and a counselor to help me be the best parent that I can be. I have walked with friends, in the Medicaid gap, as they’ve tried to find affordable mental health care. Our access to mental health care is even worse than our access to our corporeal health care.
Friends, maybe you’re fine. Maybe you have great, inexpensive healthcare and you get to go to doctors who can see you any old time and they have free sodas in the waiting room.
I hope you can look past your own nose and see that is not the case for 26.1 million fellow Americans (4.1 of those being children).
Something’s gotta give.
Medicaid has saved my son’s life over and over again. It has prevented us from having anxiety about finances, from being in medical debt just to keep our son alive, from making hard choices about what we can’t afford. All families deserve to have access to quality health care without worrying about having to choose between life saving medication or paying the rent. All families of kids with special needs should have healthcare that is robust and meets the needs of the kids and families in a way that provides a good quality of life for everyone involved, including access to free and/or affordable childcare.
If you haven’t voted yet, I hope you do and I hope that you’re able to consider those around you that may not have the resources or opportunities that you have had. Please consider how privileged “they just need to get a better job” sounds.
We can do better than this. We need to carry each other.
People have a lot to worry about. Paying for medical care shouldn’t be one of them.