By: Kate Slate
The National Association for Mental Health, modernly known as Mental Health America, first recognized May as Mental Health Awareness Month in 1949 to bring awareness to mental health conditions. Seventy-five years later, we commemorate this month with a strengthened understanding of what it means to have an often-invisible illness while still investigating how mental health conditions uniquely impact individuals with intellectual and developmental disabilities (IDD).
“Adults with disabilities report experiencing frequent mental distress almost five times as often as adults without disabilities,” according to the Centers for Disease Control and Prevention (CDC). In addition to the behavioral challenges this population can face, such as difficulty with mobility or communication, co-occurring mental illness is commonplace, according to the American Psychiatric Association. Identifying where a disability symptom ends and a separate mental disorder – attention-deficit hyperactivity disorder (ADHD), depression, and anxiety disorders – begins, however, is still a work in progress.
Sarah Lineberry, an evaluation associate at Virginia Commonwealth University’s Partnership for People with Disabilities, has studied this topic in her current role and through past work as both a case manager and LEND trainee.
“If there’s someone who doesn’t communicate verbally, are they getting medication just to extinguish a behavior that’s challenging or are they getting a medication to address the underlying symptomology and improve their quality of life?” said Lineberry.
She explained that while individuals with IDD might not be able to verbally communicate their mental challenges, that doesn’t mean they’re nonexistent. In a 2023 paper exploring this topic, Lineberry found a pattern in folks with IDD who were marked as having a co-occurring illness and those who weren’t.
“Folks who had higher support needs, and especially folks who didn’t communicate verbally, were much more likely to have just behavioral support needs noted in their file,” said Lineberry. “Whereas folks who had mild and moderate disabilities and communicated verbally, were much more likely to have a diagnosed mental health condition.”
A lapse in understanding the unique needs of an individual with IDD is reflected in the health care system as well, said Genevieve Graaf, an assistant professor at the University of Texas at Arlington’s School of Social Work and a co-investigator of the IDD Parent Advocacy Study.
“If a child doesn’t have profound intellectual or developmental disabilities and they have what appear to be more behavioral health concerns, but there are co-occurring developmental disabilities, those kids get shifted to the public mental health system,” explained Graaf. “I just don’t think either system has the competence in each other’s fields to adequately support those kids.”
Both fields are ever evolving. At the core of treating mental conditions in folks with IDD, Lineberry championed, is understanding the unique needs of the individual.