Over the last few months, I have debated whether or not this was a subject I was even willing to discuss in a forum such as this one. It is something very personal, and the kind of thing that has torn at me for the last two years. My oldest son, incredibly intelligent, funny, and otherwise healthy, suffers from autism. And now, at 10, will be leaving our home.. and I'm devastated.
I'm happy here to not reveal names, because that would be a bit to personal. I'm a proud father of two. Our oldest child, 10, is smart. Not "oh, he does well in school" it is an almost savant level of intelligence when math comes into the picture. On standardized testing, he breaks the scores at his school and sets the curve. When I see his report cards and standardized testing, I smile with incredible pride. He's my son and along with my wife and second son, they are the most important things in my life.
And that's what makes this week the most difficult. And it's a story of how messed up US healthcare really is.
Our son, autistic, suffers from OCD, bipolar (which can't be fully diagnosed because of age), and schizophrenic behavior and self-harming behaviors. Up until two years ago, at 8, through the help of counselors, therapists and psychologists, most of these issues could be addressed.
I had left my job with a hospital to work for myself so I would be able to help my wife with more time available to them, the ability to come home as needed. I carried over and started with our own insurance carrier, which was fine.
Two years ago, at Christmas, an event occurred in our home that changed everything. After treatment for all of us in a hospitalization from the event, we had to rebuild.. start over. Building a new house, re-evaluating medications for our son, and starting again. At our next renewal, our insurance provider took a pass. And suddenly, getting insurance to cover our autistic son became impossible.
Our costs per month skyrocketted. Medication alone went to more then $300 a month to start, and as of today, it's more then $700 monthly in just medications.
All of this said, his academic excellence continued, racing ahead of his peers and beginning advanced coursework. But his level of frustration with things being slightly out of order became more and more dangerous. Teachers compelling him to "show his work", which he adamantly refused as "lazy! lazy! lazy!" risked having blowouts that resulted in property damage.. and more costs, which came through us.
Finally, we reached a point where the structure of school and the level of medication simply couldn't contain his frustration with the world. Self injury and threats to others became more and more serious, without letting up. While scoring 100% on a test was good, refusal to show work resulted in rages that sent parents dropping everything, fleeing to his school to help get him out of the classroom and away from harming others.
Our small successful business was now completely suffering. We cancelled appointments and jobs because there was no guarantee that we could keep up with those jobs and at the same time handle our son. How do you commit to a project knowing at any moment, you may be called away to rush to the hospital or school?
At age 10, within our state, you can be arrested for aggravated assault. Seeing an "in", our son was arrested twice in a 3 month period for assaulting a para-professional. Now, it stopped being just about the medical expenses, the costs, and the fears.. the legal battle now surrounded us. Lawyer costs. More debt. We had only contracted out work for the last year, I had to let all employees go at the beginning of the year (thanks GM for not ever paying your bill) and now, we had to see what would happen next.
Turned down prior for SSI/Medicaid, we returned to work with our advocacy services in our metro, members of the state Mental Health Services. Surely, at this point, our son would qualify for the kind of help he would likely need.
Encouraged by a phone call and a conference with mental health professionals, a medicaid representative, and our treating practitioner, a decision was made: emergency psychological hospitalization for our son to get an evaluation would all but guarantee us medicaid status to help with our son. We would be able to get an SED waiver, as it's called, to approve him for medicaid status.
Our son had never been away from us for more then a night or two. Not since his birth, we have changed our life for our son. After a lot of thought and quite a few tears, we agreed with the medicaid rep. Our son was admitted.
It didn't take long. In a two week evaluation, our son received approval for medicaid.. so long as he would be institutionalized. Medicaid would not approve outpatient care, at least not yet. It turns out, to get that kind of medicaid approval, he would have to receive a different waiver, and be seen in a public office. After being seen by the medicaid representative we visited with prior to his hospitalization, we received a "yeah, I guess that's true.. we can do that".
Then, the bomb drops. Our sons hospital stay? $40k. We've stayed in good touch with his hospital, two medicaid reps, a counselor, and an SSI rep. We have a team meeting. Yes, medicaid will cover the costs, which whew since they were the ones who told us we had to do it.. but we have to get out-patient approval first. If we admit him to longterm care, medicaid will not cover.
"Wait, wait" I say.. so medicaid will cover 100%, today, if we have him insititutionalized, right away "well, we'll cover everything going forward, but we won't cover that in the past.. no, strike that, we'd cover 1/2 of that".
"OK, what is the solution" "ok, you need to qualify for outpatient care, and then we'll cover 100% of that past care at the psychiatric hospital."
And now it becomes a war of paperwork. Tomorrow for us is D-day. After a year of tens of thousands in costs, tomorrow decides what happens next. The requirement to get out patient approval to pay past bills and a re-evaluation for his longterm care.
After working with the right counselors and services, we've found the right kind of facility where our son can be academically advanced at his own rate and be safe, and prevented from harming himself or others. It's a great shot.
It's the solution we had always hoped would never have to happen, but it's also the best chance for him to live a full life and to keep our other child safe.
Tomorrow is the day. Tomorrow isn't the day to determine if he can get care - thankfully, we know that will happen.
Tomorrow is the day for my wife and I to find out our future. The right words from our reps won't change his healthcare. Thankfully, we have a plan for his future healthcare that is assured. The right words from our counselor instead tell us whether or not we will be forced into bankruptcy. The right words make the difference. The wrong words mean that for us, our lives will change.
For those that don't think that failures in US healthcare impact more then a few.. two years ago, we employed 3 full time employees. Today none. two years ago, we had healthcare. Today, while we do, our son still is not guaranteed.
Tomorrow is d-day. I am sick at my stomach for what comes next. I have high hopes that whatever happens next helps our son live his life to the fullest. That it gives our youngest son a chance at normalcy. At times we feel selfish and ashamed. But I'm hoping at the end of the week, I will not be waiving the white flag of surrender.
I believe in a country that holds open the opportunity for people to find help. I believe that health care needs to, at it's best provide families with hope.
And until tomorrow afternoon, I will hold out all hopes that somewhere, somehow, the right things will happen.