Health insurance. The one thing all providers in America can agree on. I’ve yet to meet a single provider in any field that has any kind words to spare for it. In the 10+ years I’ve been in the field, I’ve watched health insurance pull our hands farther and farther behind our backs. It’s not just ABA either. Their influence over all aspects of healthcare has been growing as they gained control of our incomes. It’s gotten to the point that the final say on anything health-related comes not from trained professionals, but from health insurance.
And then there’s autism, the parenting/health buzzword of the 21st century. With the help of the likes of Autism Speaks, autism has gone from a little-known disorder thought to be quite rare, to a major talking point across pop culture, social media, and politics. Why have the politicians gotten involved? Well, because it became a money issue. There were so many conversations about how much therapy costs, how much these humans cost when they don’t receive therapy, and how insurance should spend the astronomical amounts to cover said therapy, otherwise the humans will cost the country even more.
Yeah, it was gross then and it’s gross now.
The pros and cons of the litigation process that got so many insurance companies to cover ABA is a different post. What I’m on about this time is that health insurance— with its hard-on for corporate America– has allowed ABA to become a huge business that feeds on the autistic community.
The Contingencies of Insurance
My professor used to say “never let anyone control your reinforcers.” A hefty task, indeed, especially in a capitalist society. Money is arguably one of the biggest reinforcers for the 99% of the U.S. population that doesn’t hold the majority of wealth. People notoriously sacrifice primary reinforcers in the interest of saving or making money. They neglect health, food, and even appropriate shelter in the interest of maintaining secure access to money. It’s understandable, for without it, the ability to benefit from society disappears, including those primary reinforcers being put on hold.
Enter ABA therapy, a service considered essential for some vulnerable populations. Not only does it charge by the hour, it also often demands a hell of a lot of said hours. The cost is on-par if not surpassing other healthcare services in the country, including major surgery; hence the need for insurance to cover it and cut the costs on families.
So now, ABA’s most powerful reinforcer, income, is being controlled by insurance. They decide when and how much we get paid, if at all. In order to drive up their own profits, insurance is then able to force others to drive up prices (for information on that, watch this). Like any employer, when they control our income, they control our behavior. We have to do things the way they like it, regardless of our thoughts on it, or they don’t cover the service. If they don’t cover the service, either the family has to pay out-of-pocket (usually impossible), or we don’t get paid.
And most people aren’t going to provide services for free. Plus, doing so sets for a whole host of other issues, including potential ethical concerns. So yeah, out-of-pocket it is.
The contingencies of capitalism
Now that autism is a talking-point and there’s a lot of money involved, enter corporate America, slobbering at the thought of this new phenomenon and the profits to be made. As of 2021, 1.8% of kids in the U.S. are autistic (Elemy.com). While the push for ABA has been losing some traction with recent criticism, it is still considered the “gold standard” and the first recommendation given to families receiving a diagnosis.
Despite the somewhat questionable justification for the 35-40 hour rule, this is also not going away anytime soon. So you now have a massive hoard of potential consumers willing to take part in an hourly service for 35-40 hours per week, and to continue doing so for years. These consumers are also convinced that this service is absolutely necessary for their child to succeed in life, so they are likely to do everything they can to continue receiving– and paying for–these services for as long as they possibly can.
That’s a lot of money, folx.
The field’s response
We’ve all noticed it. Anyone looking for jobs in ABA are probably seeing a whole lot of the same names come up in job ads. Nearly gone are the small agencies run by 1-2 BCBAs. What we see instead is rapid expansion across states. Many companies will open multiple clinics within a single year. As they grow, they start buying out their competition, absorbing the smaller companies into their giant conglomerates. Able to offer more benefits and get their names out there faster, the smaller companies can’t compete for customers or staff. Furthermore, insurance constantly cuts the rates they pay, which means the smaller companies can’t afford to stay open on their own.
When a giant company offers an equally giant check to your dying company, it’s tempting.
With the growing prevalence of autism comes a growing customer base, and an exponential profit margin.
The contingencies then versus the contingencies now
Before insurance could control everything, there was a higher focus on results, which usually meant quality of care. Again, what those results and that quality mean are different posts for a different day. The point is that professionals trained in the field were in control of the quality of care. BCBAs were the ones determining goals, how to teach them, and how to continue and adjust based on what the data told them.
Hours were always an issue. On the one hand, our ethics tells us to only deliver what is medically necessary, but then reducing hours means reducing profit. Even with the best intentions, we are going to be more motivated to continue justifying those 35 hours per week as long as possible than we are to re-evaluate and reduce those hours. Especially for independent contractors, our livelihoods literally depend on keeping kids in therapy longer.
This difference now, is that those contingencies go through even more layers. Corporate big-wigs with no contact or emotional investment whatsoever into the actual humans receiving services see just the profits and nothing else. There’s outside pressure now on practitioners to keep those hours up, and to keep finding reasons to use them. Even moreso, those corporations are at the mercy of what insurance is willing to do. Therefore, it’s more profitable for them to appease their bosses, the insurance companies, than it is to fight to return control to the actual experts.
And let’s be frank here, shifting control to the actual experts would probably push most of those CEOs out too.
Our decisions, our quality of care, is now dictated by people with absolutely no training or expertise in the field.
What was that about the Right to Effective Treatment?
So what should we do?
There are a few uncomfortable questions to direct to the field here. For one, why do we allow anyone to make passive income off of vulnerable families? Why do we criticize other fields for the way they address behavior but then allow untrained bureaucrats to dictate our decisions? What is the difference between health insurance’s role in medicine and practicing medicine without a license? Insurance companies are often lobbyists, so in the conversations about medicare for all, why is that not a conflict of interest?
They’re uncomfortable questions because the answers aren’t easy, and definitely aren’t feasible in a capitalist society. Or rather, the solutions come at a literal cost most of us can’t afford. Think about it: What if we, collectively as healthcare providers, told insurance to go fuck themselves? What if we all cut contact with health insurance and provided these essential services at affordable prices (assuming the government isn’t going to cover our costs, because something-something-socialism)?
Unfortunately, without insurance, you have some choices to make. You’re now caught between making your services only available to a very select few or making a deep cut in your income, and there’s no guarantee that the latter won’t happen regardless. It’s likely most wouldn’t be able to afford to reduce prices enough to reach the majority of families in need. The best balance for that would be to reduce the amount of hours recommended and then serve more families with fewer hours. The plus side of that would be it would force us to re-evaluate the amount of hours really necessary to be effective, but that doesn’t mean those hours will be affordable for even most people.
Then again, if you ask these corporations how they can cut costs in order to feasibly cut ties with health insurance, they will probably tell you it’s impossible. If you really dig into those numbers though, you might just find some places where costs can be cut– i.e. extremely large salaries going to people who are contributing nothing to the actual services being provided. If a person’s only role at an ABA company is to make the corporation work, they’re useless and their salary is costing unnecessary money.
I said what I said.
There just isn’t an easy or cheap solution. Either way though, insurance needs to be reeled in. We need to push back more, and regain control of our quality of services. It’s idealistic to think that all of us could band together as providers, accept the consequences, and do what’s right, but it shouldn’t be impossible. We just have to be willing to accept delayed reinforcers.
Resources
Elemy. (2021, May 10) Autism Statistics and Rates in 2021. https://www.elemy.com/studio/autism/statistics-and-rates
Zhai, Y., Shaojing, S., Wang, F., & Ding, Y. (2017). Multiplicity and uncertainty: Media coverage of autism causation. Journal of Informetrics, 11(3), 873-887. https://doi.org/10.1016/j.joi.2017.07.005