Our family story and the story of the ACA are inextricably intertwined. We are eternally grateful and indebted to the lawmakers who worked so hard to make sure that our family received the care we needed at critical times in our life. Could it be better? Yes. But it was a significant improvement over the alternative of not having life-saving access to medical care when we needed it.
The Outline of Our Story:
Our daughter was born just before the ACA rules about maternity coverage became law. So having a baby was not a covered benefit. We paid full price for her and she was worth every penny. But it didn’t go towards our deductible.
We had an HSA, which was supposed to be the best thing ever invented for families like ours. We could save about $6,000 a year towards our medical bills and it would accumulate over time.
This works great… If you don’t have any medical bills. For families like ours, it was a disaster.
Tim’s mental health and Robin’s asthma were both considered pre-existing conditions, so we paid for our medications out of pocket and this came out of our HSA but didn’t count towards our deductible. Just Robin’s inhalers, which are critical for her survival, were about $250 a month. Pregnancy wasn’t covered so Eleanor also was paid for out of our HSA without going towards our deductible. Many other screenings and treatments were not covered under insurance–this wasn’t just our plan. Every plan, every business no matter the size, could choose what to cover and what not to cover. So you could have really great insurance through work and your particular problem could have been excluded from your specific plan as a cost-saving measure.
Try saying that outloud to another person, “Your care has been excluded as a cost-saving measure.” Hard to say out loud, isn’t it? But that was how it was prior to the ACA, not just in the individual market. It was also common for mental health conditions, even ones that weren’t pre-existing, to not be covered as well as physical conditions…or at all.
Thankfully, Eleanor treatments for tongue tie and torticollis were covered, but because nothing else we needed was, we hadn’t used up our deductible yet. So we spent the last bit of our HSA on those treatments. (Torticollis is a tight muscle in her neck that caused her head to grow very large on one side and small on the other.)
By December of the year that Eleanor was born, we had an empty HSA. $0 left for any medical expenses.
And in January, with no money in our HSA, Robin tore an artery in her neck. She wasn’t doing anything crazy–just trying to stretch out a kink from working at a computer.
The artery clotted and threw multiple clots into her brain. We don’t know how many strokes she had. We know of two episodes, and four dead spots. The important thing to us at the time was that despite being given very scary statistics about her risk of death that night, especially if the tear went any further, Robin is here with us.
A vertebral artery dissection is a 1/100,000 cause of stroke. So we are here to tell you that you can be in excellent health and still become a statistic.
Unfortunately, Robin delayed going in for care because we had no money to pay for an emergency room visit. This delay is why she had two episodes of strokes before going in. The second episode was more severe and has left her with permanent disabilities. If we had not been worried about the cost, perhaps she would be completely fine today.
Robin fought hard with the doctors and was allowed to go home the next day. There was nothing more the hospital could do except keep her on blood thinners. And if she died she wanted it to be at home with Tim and the kids. She had gone to work in the morning and then not come home to our infant and toddler. She didn’t want that to be the last they saw of her if she died.
But she didn’t, because here we are
The insurance was billed $30,000 for her hospital visit but thankfully we were only responsible for about $8000 total. So we met our deductible. But we had no money to pay it. We dreaded opening the mailbox every day to find another bill we couldn’t pay and another. Our last bill arrived over a year after the hospital visit. But we are blessed that Robin’s aunt talked to the extended family and Robin’s grandpa and uncles paid her bills. Not everyone has a family who can do that for them.
But then we didn’t have the money to pay our premiums either so pretty soon we were uninsured.
We relied on favors from Robin’s colleagues until one day we realized that under the new plans made available under the ACA, we qualified for Medicaid. Medicaid was lifesaving. It paid for blood thinners, blood test, MRIs, physical therapy. It paid for well-child checks and therapies for the children.
Robin was working two jobs at the time. Her main job was as an employed physician, which supported the family. She had also literally just opened a solo safety net clinic with no staff to provide care for uninsured and underinsured families in our community.
Robin was physically unable to drive to her main job or work more than an hour or two. So she resigned in order to focus on her new practice, which could be set up completely around her needs. She had rescheduled several appointments in her new practice while the hospital so she was determined to see those patients within a week.
Exactly a week after her hospital stay, Robin was scheduled to see a patient for a knee injection. The strokes had taken away her balance and proprioception (the sense of where she is in space). Her first sign of the more severe episode was that she would reach for her mouse…and miss. Reach for a doorknob…and miss.
So we had to figure out a way for her to practice knee injections. Tim stuck a toothpick in a syringe and Robin spent and hour or two every day injecting every nail hole in the house. By the time she did the knee injection, she did it flawlessly. But she still couldn’t wash her hair, stick the candles in Charlie’s birthday cupcakes, or change Eleanor’s diaper. She had to relearn each and every skill.
Our entire focus was getting Robin able to work again so Tim took care of the kids and Robin while Robin did nothing but work, therapy, and recover. Thankfully, the kids were little enough that Robin could just lie on the floor and they were happy.
Robin received excellent physical therapy and with us both focusing on her recovery, she was able to build her practice and improve our financial situation. With a better financial situation, came the news that we were losing Medicaid.
Even more devastating, our last month on Medicaid, Tim was diagnosed with cancer. Prior to the ACA, this would have been a tragedy since we never could have afforded his care. Thanks to the ACA, we were able to keep our same doctors and he was able to continue with the same treatment plan.
Prior to the ACA, a person with cancer was uninsurable on the private market and could be dropped when they received a diagnosis. Remember that we were already paying out-of-pocket for Tim’s mental health care and Robin’s asthma. There was no way we could pay out of pocket for Tim’s cancer treatments, too. But with the ACA, we didn’t have a single day without coverage.
Unfortunately, we still had a deductible. Thankfully it was limited by the ACA. But it was still most of a month’s income. We were still trying to climb out of the hole from the period of time when Robin was barely working and we didn’t have a single extra penny. But we also didn’t have to declare bankruptcy.
As our income improved, we gradually paid more for insurance. Thanks to the ACA, our premiums, deductibles, co-pays, and coinsurance were all based on our income. We were still stunned to find such a huge percentage of our income going towards co-pays and co-insurance. Every session of therapy, physical therapy, occupational therapy, or speech therapy has a separate copay. For a neurodiverse family, this adds up very quickly.
But thanks to the ACA our family will always be insurable. Despite Robin’s strokes, which would have made her uninsurable prior to the ACA. Despite Tim cancer, which would have made him uninsurable prior to the ACA. Despite Tim’s and the kids’ diagnoses, which were excluded from coverage prior to the ACA. Thanks to the ACA, we know that we can get care.
Every time we hear a politician talking about pre-existing conditions as if we did something to earn them we are hurt, angered, and saddened. We know better. We know there is nothing we did to cause our pre-existing conditions. We know that Tim’s family has a lot of weird cancer because he grew up in an agricultural area wear during a time when nasty chemicals were not regulated. We know that Robin’s strokes were a freak accident. We know that the autism, ADHD, and OCD in our family are genetic. And we know that there is truly nothing any people do to intentionally cause pre-existing conditions.
But it’s all too easy for someone to start believing that it’s their fault even though we are all doing the best we can with the genetics and childhood we were given. We need to all have the humility to know that whatever the diagnosis, it could be us.
People might start believing that they’re not worth it. That they don’t mean anything.
When our politicians pretend like they are on God’s side, but they say that God’s children don’t matter, we know that they are lying snakes.
And so we are telling our story. Our story of how the ACA and our family will forever be a part of each other.
At least a quarter of people in the United States under the age of 65 have a pre-existing condition that would have made them uninsurable on the private market prior to the ACA. With the rise of the gig economy, more and more people are relying on their individual ability to obtain insurance. How many people do you know who work for large companies? Maybe we’re just in a bubble but about half our friends don’t.
As many as 90% of people with autism have other conditions that would not be covered prior to the Affordable Care Act. About a third of people in the United States are covered by Medicare (for elderly or disabled) or Medicaid (for people with lower incomes) but the remaining are dependent on commercial insurance.
Without the ACA, a lot fewer people will have Medicaid, which leaves neurodiverse families with lower incomes in a terrible predicament. Medicaid is a far superior option–it’s a struggle for us to afford our many copays every month. We ration our care and we know many people who do the same. Those who stand to lose Medicaid would often end up with no care at all.
We now have insurance through Tim’s job. He is literally working for the benefits, with a take-home pay of $161 every two weeks after our insurance premiums are pulled from his checks. But we’ve got good insurance, and that’s what matters to our family right now.
Considering that the majority of autistic adults are unable to maintain full-time employment, and most Americans receive their insurance through employment, we know that a disproportionate number of neurodiverse families will be affected if the ACA is repealed.
Neurodiverse families rely on the Medicaid expansion. Neurodiverse families rely on the elimination of pre-existing conditions. Neurodiverse diverse families rely on the income-based premium payments. Neurodiverse families rely on essential benefits to make sure their care is covered. Neurodiverse families rely on mental and physical health benefits being equal.
Neurodiverse families need medical care and deserve medical care. Until our government and politicians are willing to do what it takes to make sure every person has access to affordable health care, we will continue to fight for it for our family, our friends, and our community. Please join us.
On Monday October 5th, Robin will have an opportunity to speak with members of the Senate judicial committee and the press about what the ACA has meant to us. If you have a story, if you would be uninsured without the ACA, if you have a pre-existing condition, please tell us here, or in a private message.
Robin is a physician so you can count on us to not share identifying information. But we want to be able to speak confidently that we are representing the community. We want to tell them that neurodiverse families are not going to sit by quietly while our health care is taken away.
Together we can make a difference.