I’m a behavioral health provider and often see clients who are minimally communicative (usually together with ID/DD), and also clients with normal or above-average IQ but clinically significant deficits in self-awareness to the point of being unable to describe symptoms well.
In those normal IQ patients there are also theory of mind issues, so we run into things like the client never mentioning severe heartburn because they just didn’t ever stop to think that it’s not normal, answering “no” if asked whether it hurts to eat (because to them, “hurt” is an elevation over baseline, except their baseline is what we call “hurts”), giving incomplete (complete to them) answers to questions, BUT being able to give useful info if they are asked a perfectly worded question.
To further complicate things, some clients also don’t understand very simple commands or they have severe behavioral issues that make things like blood draws or even blood pressure tests quite difficult.
I get a significant amount of time with the parents/caregivers both in-home and in clinic, and insurance generally allows (after some phone calls and letters) me to attend medical appointments with the clients if necessary. This is what I’ve been doing so far based on feedback from MDs:
- use therapy to address behavioral issues, prep for procedures (rehearse steps, desensitization when appropriate), determine accommodations (dimmed lights, appt after lunch), prioritize health communication (“point to where it hurts”)
- make sure parents log basic health info BEFORE the dr visit (ideally 2 weeks of food/liquid intake, bx symptoms, sleep, general activity/engagement levels, BM/urine output)
Even with all that, the majority of medical appointments result in doctors saying they can’t assess and don’t know who to refer out to. This is a huge issue because it leads to situations like chronic constipation going untreated until it’s a full impaction needing inpatient care. Sometimes the necessary test can be identified (swallow study) but the MD says it’s impossible because the kid wouldn’t tolerate it… so instead they end up having to tolerate a feeding tube a few years later.
There are some hospitals that have dedicated clinics for this population, but waitlists are long, they often require symptoms to have escalated to a certain point before even putting a family on the waitlist, many families don’t have the ability to take two weeks off of work to go to another state while their kid gets testing, and sometimes there’s no real option for followup care.
What else can I do on my end to help these clients be able to get adequate medical care? Are there any behavioral skills that are especially helpful to make exams easier? Information to log that would give you a better idea of what’s going on?
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