“You can’t do that!  People with dementia can’t learn!” he said with an arrogant assertion and a tinge of ridicule.  

I nodded back to my graduate academic advisor, while my inner monologue quipped back, “Well, buckle up! We are in for quite the ride, given I just moved into a moldy motel room (true story!), with everything I own packed into an aging Mazda, and recently signed for $15K in student loans that I need to last me 12 months!”  

This was the first time I ever mentioned to anyone, beyond family, my desire to find the intersection of behavior analysis, intellectual disabilities, and dementia – and make it my home.  

That’s His Diagnosis, Not His Name 

Formally, I hold a Master of Arts in Gerontology from Appalachian State University, as well as a Master of Education degree with an emphasis in Applied Behavior Analysis from Arizona State University.  

However, in hindsight, my education began in the 1970s, a decade before my birth, when my dad was a Direct Support Professional (DSP) working with people with intellectual and developmental disabilities (ID/RD).  By the time I was a young child, he had taken his skills, climbed to the top, and became the Executive Director of a large residential provider serving individuals with ID/RD.  

After a day of watching “Reading Rainbow” or “Sesame Street” in elementary school, I would return home to hear about the efficacy of interventions for a man who would “eat frozen pizzas right out of the freezer in the grocery store.”  

Not only was this shocking to hear as a six-year-old, but it was also equally shocking as an adolescent to realize Prader-Willi was this man’s diagnosis, not his name.   

My mom’s impact on my education is similar, as she, too, worked with people with ID/RD in the 1970s.  In fact, my parents met while working on the same “units”, where my mom was a staff nurse and my dad worked as a DSP.  

Mom ascended too, despite her “Nurse Ratched” moniker flirtatiously given to her by my dad on the weekend shifts they shared.  She is an Adult Nurse Practitioner who specializes in psychiatry and works exclusively with adults with a dual diagnosis of ID/RD and mental illness.   

My high school transcript would indicate that I was adept at early dismissal, stained glass class, and detention.  However, when the educators in Columbia, SC, generously donated my parents a high school diploma with my name on it, I had a unique skill set that was never tested on the SAT. I could diagram the psychobehavioral components of feces smearing behaviors in a profoundly intellectually disabled, non-verbal adult, complete with a plan of care that did not involve anti-psychotics.   

Thanks, Mom, what a tremendously helpful skill in college bars!

Academia put a few letters behind my name, but my education regarding people with ID/RD started long before I worried about poor Prader or developed “kennel cough” from that moldy motel room.  

My story is a generational one and here I am today, a Board-Certified Behavior Analyst (BCBA), specializing in behavioral gerontology and the behavioral presentations of undiagnosed medical conditions.  I am a business owner, award-winning author, and thought leader.  But what exactly does all of this mean?

So, Where Do You Work? 

For Behavior Analysts (BAs), the question of “where do you work?” has the potential to be a pedestrian one, as many work in schools, applied behavior analysis clinics, and universities.  

BAs can also work in homes below the poverty level or mansions with security guards at the entrance, have roles assisting with end-of-life support, provide informal grief counseling, assess prison inmates, advise hospitals, work with physicians, and sit on national boards.  Or, so I’ve been told…  

Every setting is unique, just like the individuals we serve, yet everything is always familiar.  People with intellectual disabilities need more advocates, caregivers need more emotional support, doctors need more education, and everyone needs more funding.  Given all the needs, there is only one acceptable answer to the question, “Where do BAs work?”  

We. Work. Everywhere.  

As a general rule, the populations served by BAs are not as diverse as in the aforementioned settings.  Depending on your reference source, approximately 75% of BCBAs work with children with an autism spectrum disorder.  

My business, Crescent Behavioral Health Services, primarily serves adults with a dual diagnosis of ID/RD and mental illness who live in residential group homes.  

With the aid of mischievous wording from a mentor, I have also developed a sub-specialty working with criminal offenders with intellectual disabilities.  Then there is my mold-breaking holy grail – aging, intellectual disabilities, and behavior analysis.  

My goal is to illuminate the benefits of behavior analysis beyond specific diagnoses, ages, or settings.  One approach to working toward this goal is promoting the various environments and people I work with, but also how I work.  

As service models change, Behavior Analysts must adapt our skills beyond the linear, formulaic approach that turns people into data.   BAs must be more inclusive in the populations served and settings worked, which should be guided by the ability to improve people’s lives, without regard for diagnosis, age, or setting.   

The roles BAs serve go far beyond specific expertise in evidence-based practices and necessitate being advocates to combat diagnostic overshadowing, training caregivers, and serving as leaders of interdisciplinary teams – to name a few.  

The vast potential of BAs to serve a broad continuum of needs for people posits us as leaders in day-to-day care, but also the global support of all people impacted by and serving individuals with ID/RD.  

For behavior analysis, as a field, to survive, let alone thrive, we must shatter the molds and torch the ivory towers to be inclusive of all people. Everywhere. 

All of Ley’s work is original and no form of AI was used to write this blog. 

This piece originally appeared in HELEN as part of Ley’s co-authored series on “Unlocking Behaviors.”

Never disregard professional medical advice or delay seeking medical treatment because of something you have read in this article.