A day in the life. Photo Credit: Megan Allen

Once again, healthcare has found its way back into the political arena and there are few things that cause me more anxiety than the threat to repeal the Affordable Care Act. Yes, I know its not perfect, amendments are needed, but its a start. And yes, I’m aware that this is a highly politicized issue but if one of my goals for this blog is to help make special needs parenting relatable then this is absolutely part of it. So, here we go: unleash the mama bear… After years of debate, I think most of the country understands that denying coverage due to pre-existing conditions is a crappy thing to do and our elected officials should make sure that clause is protected. But if the supreme court upholds the ruling from Texas and declares the ACA unconstitutional that won’t matter. I want to make sure that everyone understands what is at stake for families like mine. This isn’t a red or blue issue, a conservative or liberal issue - it is a life or death issue.

Currently, elected officials are assuring the public that should the ACA be declared unconstitutional a new health care plan would be put in place. Our government’s inefficiency is no secret and to come up with a replacement plan could take years. Years which my daughter may not have. I have spent more hours than I care to share day-maring about what that reality would look like. We currently receive our health insurance through the Actors Equity Union which provides benefits to theater actors working on union productions. Assuming that the health plan the union pays into doesn’t remove pre-existing conditions if it was permissable, we would find ourselves in a position where Miguel could never stop working in theater for fear of losing our insurance and not being able to get Adelaide accepted on a new plan. So what?! Miguel enjoys acting, whats the big deal if he has to do that the rest of his life? That’s of course assuming that whatever show he is in doesn’t close and, if/when it does, that he can get hired for another show. Or that whatever job he gets next is somewhere that our family can live, and if not then I would be single parenting as Miguel works a job away from our family just so he can keep the health insurance we so desperately need for Adelaide. And so the daymare goes.

Miss A receiving a stomach x-ray to rule out an intestinal blockage because she had not had a bowel movement on her own in weeks. Without insurance this routine test would not be possible.

In 2018, our insurance was billed over $700,000 for Adelaide’s medical and pharmaceutical care - this is not what they paid, of course, as they negotiate lower rates, but it is what they were billed and what we would be asked to pay if not for insurance. Expanded medicaid and pre-exisiting conditions get much of the ACA spotlight, but what about some of the other benefits, such as, the elimination of annual and lifetime spending caps. How quickly do you think we would meet a cap with Adelaide? Might as well add to my daymare having to choose between the best treatment available and what we can actually afford. It’s also important to note that the $700,000 does not include any of the following: gas to drive to appointments, parking fees, meals while at the hospital, care for Jackson if we’re stuck at the hospital or an appointment, medical equipment and formula which is not entirely covered by insurance, as well as diapers and wipes for the entirety of her life as she will likely never be potty-trained. My point is the expense for medical care goes far beyond what is billed to insurance.

But it doesn’t stop there, the cost of not being able to afford our daughter’s healthcare would negatively effect far more than our bank account. Money is the number one reason marriages end, would our marriage survive if we had to choose between putting food on the table or medicating Adelaide? Without insurance we would lose our home-nursing which would mean one of us would have to stay home to care for her with zero option of that person bringing in additional income. I did that for the first two and a half years of Adelaide’s life and it almost broke me. Would my mental health survive? I realize there are still families out there for whom this is their reality, but, thanks to the medicaid expansion, that was part of the ACA, there are significantly fewer families in this position today.

The familiar view from my PICU pullout sleeper chair before I go to sleep

Also forgotten is that the ACA includes a provision that allows children who require palliative care or hospice services to still access therapies. Before the ACA, families in many states had to choose between end of life services for their children or continuing their therapies. Therapies that are often used as treatment similar to pharmaceutical drugs but no one was insisting that children stop taking medications in order to receive hospice care. During our very rough January, we enlisted the help of palliative services for Adelaide and through these services have had the support we need to keep Adelaide comfortable at home and out of the hospital. But had we been forced to stop PT and OT in order to receive these services, we likely would not have enrolled and Adelaide may have had even more hospitalizations than she’s already endured.

Clearly, healthcare is complicated and I don’t pretend to know what the best solution is. But there are really smart people out there that do have the knowledge, that understand these systems, and have impartial ideas. I refuse to allow my daughter to be collateral damage because politicians felt the need to rush toward eliminating the ACA before a replacement could be decided upon. Perhaps you think I’m being emotional or getting ahead of myself. That there is no way millions of people could be left stranded without affordable health care and gosh I hope you’re right. But my daughter, my family, my marriage and my mental well-being don’t have the luxury of crossing fingers and hoping that politicians do their job. So hear me roar, from the pages of this blog to the ballot box, this mama bear will not go down without a fight.

If this post resonated with you or you know someone who you think could benefit from reading this post, please share!