What If We Built ABA and Autism Care Around the Patient?

From the age of 22 to 26, I spent three years of my life battling ulcerative colitis, a serious autoimmune disease. After multiple treatments and various medications, and ultimately several major surgeries, I owe my life to the extraordinary medical professionals at Johns Hopkins Medicine and LifeBridge Health, two of Baltimore’s leading healthcare systems.

When you’re sick, your priorities become remarkably simple. You want to get better. You want to understand what’s happening to you, and you want to feel like the people taking care of you are doing everything they can to help.

You don’t think about healthcare in terms of billing codes, authorizations, or in-network or out-of-network benefits. All you want is to get your life back. These experiences left me with a question that has shaped how I think about healthcare ever since: what would healthcare look like if we designed it around the person receiving care?

What Does a Family Really Want?

When a mother walks through our doors at Charm City Autism, her journey rarely begins with us. She has spent years wondering why her child is struggling. Years speaking with doctors, teachers, and specialists. Years trying to understand what her child needs and what the future might look like. By the time she reaches us, she’s often exhausted and cautiously hopeful.

And what is she really asking for? She’s not asking for 20 or 30 hours of ABA therapy a week. She’s asking whether her son, Liam, will be able to make friends. Whether he’ll sit in a classroom alongside his peers, communicate what he’s feeling, and find his place in the world. Or perhaps she’s thinking about her daughter, Olivia. Will Olivia develop friendships, become more independent, and grow into a confident young woman? What will their lives look like at 15, at 25, or at 35?

Will Liam be able to work, date, get married, and build a life of his own? Will Olivia have the opportunity to pursue her interests, form meaningful relationships, and create the future she wants? Every child is different, and a meaningful life won’t look the same for everyone.

Have We Confused the System With Its Purpose?

Healthcare is built around an enormous number of systems: insurance requirements, authorizations, treatment codes, staffing models, documentation, billing, and reimbursement. And each system serves a purpose. But somewhere along the way, we’ve begun confusing the systems that support healthcare with healthcare itself.

In the ABA industry, we spend enormous amounts of time discussing authorized hours, utilization, staffing capacity, and reimbursement rates. These things matter because without them, we wouldn’t be able to operate sustainable healthcare organizations. But none of them, by themselves, tell us whether Liam is making friends or Olivia is becoming more independent.

Delivering treatment and achieving meaningful progress are not the same thing.

Liam’s mother, who has already spent years searching for answers, now finds herself navigating insurance requirements, authorizations, paperwork, and scheduling. Each step may serve a legitimate purpose, but to these families, they’re simply more obstacles between their children and the help they’ve been looking for.

And it’s not just families who experience this. The clinicians who entered healthcare to help children like Liam and Olivia often find themselves spending enormous amounts of time navigating those same systems.

I don’t believe the problem is that the people working in healthcare have forgotten why they’re there. Quite the opposite, I’ve met extraordinary professionals who dedicate their lives to their patients, both personally and in our practice. But even the best professionals can only do so much within the systems we’ve built around them.

What If We Started With the Patient?

What if, instead of asking Liam, Olivia, their families, and their clinicians to adapt to our healthcare systems, we began designing those systems around them? Imagine, for a moment, that we could build healthcare from scratch. We wouldn’t begin by asking how many hours of treatment Liam’s insurance will authorize or which services Olivia’s coverage will reimburse. We’d begin by asking what Liam and Olivia need, what their families hope for, and what we can realistically do to help them get there. And then we’d build everything else around those answers.

Of course, healthcare will always involve insurance, documentation, scheduling, and countless other responsibilities. Those requirements aren’t going away, nor should we pretend they serve no purpose. But why should they determine how we approach the people we’re trying to help?

For Liam’s father, another month spent waiting for paperwork isn’t simply an administrative delay. It’s another month wondering whether his son could already be making progress. For Olivia’s parents, every unnecessary obstacle is one more thing standing between their daughter and the opportunities they’re hoping to give her.

The Future of Healthcare Begins With How We Think

I believe the future of healthcare will be shaped not only by rapid advances in technology, but by our willingness to think differently. To question longstanding assumptions, listen to people whose experiences and perspectives differ from our own, and recognize that even the systems we’ve relied on for decades may have room for improvement. Healthcare organizations have enormous responsibilities, from insurance and reimbursement to staffing, documentation, and compliance. All of these are necessary, but they should exist to support the patients receiving care and the clinicians providing it, not the other way around.

We can build more sophisticated systems, improve our processes, and become increasingly efficient at delivering healthcare, but if Liam and Olivia are still facing the same unnecessary obstacles, and the clinicians caring for them are still struggling to navigate those systems, what have we really accomplished?

Ultimately, the measure of progress shouldn’t simply be how efficiently we operate our healthcare organizations. It should be how effectively we’re supporting the people delivering care, improving the lives of those receiving it, and actually solving the problems standing in their way.

AT A GLANCE