DDNJ Podcast: Addressing Ableism in Mental Healthcare for Patients with IDD

On this episode of the Developmental Disabilities Network Journal Author Insights podcast, IDRPP Executive Director, Mathew Wappett sits down with Micah Peace Urquilla to discuss “Addressing Ableism in Mental Healthcare for Patients with IDD.” 

Micah Peace Urquilla is an autistic, multiply-disabled educator, community organizer and researcher from Louisville, Kentucky. 

“I can't remember ever being asked or being directly engaged in my own mental health services until things really reached a fever pitch when I was in college, when I experienced crisis after transitioning to college,” says Urquilla. “My first time being independent, my first time being a few hours away from home and you know, crisis is never a good thing, or a thing that anybody wants to go through. But in some ways, for as traumatic as it was, it was also a bit of a liberatory experience for me because it was literally the first time that a psychiatrist had ever had to engage with me one-on-one and meet me where I was at. Because there was not a parent or a caregiver or someone else there to speak for and frankly, to speak over me.” 

Wappett and Urquilla discuss the Person Experiences Interview Survey (PEIS), a tool developed to engage patients with IDD in their own care. Micah works as a Research and Training Associate at the National Center for Start Services, where they serve as a co-investigator on the PCORI funded study called the Evaluation of Telehealth Services on Mental Health Outcomes for People with Intellectual Disabilities. 

“PEIS stands for patient experiences interview survey, and it's a patient reported experience measure,” says Urquilla. PREMs, which is the acronym of patient reported experience measure, help providers and researchers to learn directly from patients about their experiences and their satisfaction with their services. The PEIS is an exciting development because it's the first of its kind. Prior to our team developing it, or rather prior to its development, there weren't any instruments designed to be accessible for people with IDD in mental health care.” 

Wappett and Urquilla also discuss the barriers that present themselves when it comes to mental health care for those with disabilities. 

Wappett asks: “Given your experience in some of the work that you've done, what are some of the major systemic barriers to mental health care for people with disabilities?” 

“People, even and sometimes especially providers, make a lot of assumptions about people with IDD,” Urquilla said, “and those assumptions often lead them to not engage with us as much as they would a patient without IDD. But I think that there is a certain stigma around mental health that is pervasive even for folks who don't have disabilities, who don't have IDD, because these are stigmatized and challenging things to talk about. And it's not entirely the fault of clinicians that they've never been trained or have never had the tools to really have these difficult, sometimes like frankly existential conversations with people, let alone to do that in an accessible way.”  

“And I would argue also that this kind of umbrella of barriers contributes to a couple of the other really big barriers that we as people with IDD face. And those are, again, it's a lack of professional training and how to engage directly with people with IDD and all the factors that play a role in mental health and IDD.  We have a higher prevalence of trauma. We have less autonomy and choice in our day-to-day. All of these kinds of different things, and we can't develop a sense of rapport with our clinician, let alone a sense of agency in our wellness or our services if we're not being directly and meaningfully engaged in our care.” 

Listen to this podcast and other episodes of the DDNJ Author Insights Podcast on Apple Podcast, Spotify, and the DDNJ Author Insights Podcast Page.