IOD research assistant and self-advocate Micah Peace Urquilla (they/them) was interviewed on an episode of the "Author Insights" podcast for the Developmental Disabilities Network Journal. The episode was entitled "Addressing Ableism in Mental Healthcare for Patients with IDD" (intellectual/developmental disabilities).
The topic was to discuss the Person Experiences Interview Survey (PEIS), a new patient reported experience measure for people with IDD to share their mental health service experiences. The episode discusses how the mental healthcare system has more barriers and is more difficult to navigate and receive quality care for people with disabilities. It also discussed how the PEIS aims to engage patients with IDD in their care to ensure it more person-centered.
Listen to the full podcast or read the full transcript.
In the words of Micah Peace Urquilla:
- "The PEIS is an exciting development because it's the first of its kind. Prior to its development, there weren't any instruments designed to be accessible for people with IDD in mental health care. And as I've talked about, the opportunity to give your feedback and share your own experience and your ideas about your needs and the care that you're receiving are directly connected to how engaged you're able to be with any given treatment, which I would argue is directly related to the outcomes, the quality of those services and the outcomes that you experience."
- "Let's say I have anemia, right? I go to the doctor, they can look at the blood, and they can see, oh, low iron. But mental health care is not that way, right? Mental health care relies upon self-report in order to diagnose. And if an individual is not asked or engaged in a meaningful way, and somebody else is talking for them, it's going to completely affect the information that the clinician gets, and shape the diagnosis in a direction that's maybe not completely accurate to the lived experience of the of the patient."
- "And consider what the dynamic can do also, to sit in a room and watch someone else be asked about your experience, and to watch them and listen to them give inaccurate information... I mean, some folks can get really close to the mark. But there's always something that goes missed or under-emphasized."
- "Because it's uncomfortable to hear people talk about you. To feel as if folks are more interested in how what you're going through is affecting them, and how well you are following their directions, then you know if you're in a psychiatrist's office, you’re going through something right? And to sit there and to need help, to need support, but hear that you need to do better, or this thing is really hard for your loved one. That's creating, actively building a barrier to rapport in and of itself."
Read more about the Person Experiences Interview Survey (PEIS).
