In a Perfect World

Doctor’s Orders

By Leeanne Seaver, H&V, Headquarters © 2020

On the walls of the pediatrician’s office, there were colorful posters of happy, healthy children. In the patient room where we were, there was a nurse holding several folded towels and a doctor fitting a tiny nozzle onto some tubing. And on the examination table, there was my baby Dane, about six months old, wobbly and confused.

I remember thinking it wasn’t safe for him to just sit there without any support… and without any clue what was about to happen. The doctor gently pulled Dane’s earlobe as he inserted the tool to irrigate those tiny ears. Dane began wailing with everything I was also feeling–mostly fear and anger.

But I didn’t voice my concerns, because surely the doctor knew what he was doing.

Specifically, the doctor was trying to help my baby hear better. Although we would eventually discover that wax wasn’t the problem. Dane was profoundly deaf, but we didn’t know that yet… and wouldn’t for another 14 months.

It would take a few more years before I had any clue as to what I was doing, starting with not just helplessly watching my son go without support.

Is there a doctor in the house?

For most of us hearing people who come inexperienced and uninformed to the job of parenting a child who is deaf or hard of hearing, Hands & Voices is a galaxy full of bright moments of discovery. Especially for the things-I-don’t-even-know-that-I-don’t-know-yet, there are many ways to learn: from other parents, from Deaf or hard of hearing adults, from professionals, and from the diverse resources on our website, via podcasts, workshops, and so much more.

We grow into our role along with our child. We get better and better at finding the right answers, and recognizing the ones our child shows us.

And there will be times when what we need to know requires a doctor’s answer.

For those times, Jason Persoff, MD, has some advice:

Voice your concerns! Sign your concerns! Expect the medical professionals to make accommodations so your child can experience healthcare in a positive, accessible, and respectful manner that increasingly affirms his/her/their agency and self-worth.

Jason Persoff, MD, is an ASL-fluent physician specializing in internal medicine at The UC Health-University of Colorado Hospital in Aurora. He became fluent in French as a high schooler, and loved the language. “I found out how much I like to gesticulate when I talk, so when I learned ASL was French-based, I took classes and acquired it rapidly,” Persoff explained.

Oddly enough, a google search for “storm-chasers” and “stand-up comedians” might also lead to Jason Persoff. Outside the hospital, he’s known as the “Storm Doctor” in other circles. But the ASL fluency brought him to our attention at Hands & Voices.

Remember the H&V galaxy of diverse resources I just mentioned? It paid off in spades when Janet DesGeorges found a link to Dr. Persoff. In less than 24 hours, he and I were connected.

Communication during COVID

With a pandemic surging again all around us, there’s no better time to get your docs in row, so to speak. Extra points given for finding physicians and staff who can engage directly with their kids who are deaf or hard of hearing (DHH) and need accommodations for communication.

Persoff has strong opinions about communication accessibility, which is tougher than ever during this COVID-19 crisis.

“From very early on, doctors and patients had masks on in the clinical setting,” Persoff said. “For Deaf signers, a lot of information is conveyed with facial expression—pain, shortness of breath, signs about sickness—all of that gets compromised if you can’t see it. In ASL you can function with only one hand if you have to, but you can’t do it without a face. Fortunately, we now have clear masks at our hospital so we can see and be seen. All physicians and staff wear them when they’re seeing patients who identify as deaf or hard of hearing and use ASL.”

Good time to raise the question: Is everybody in a healthcare setting supposed to be using clear masks—including doctors and nurses in private practice?

Clear masks are fairly new to the healthcare industry, so the practice isn’t consistent yet, according to Jill Chadwick, Director of the Medical News Network that broadcasts a nationwide live ASL-interpreted, interactive COVID-update newscast from 8-9am CT Monday through Friday (See https://www.facebook.com/watch/kuhospital/). But never before has awareness of communication access been so dramatically heightened—possibly because everybody is noticing how much we all—deaf or hearing—rely on facial expressions and seeing someone’s mouth when we’re communicating.

Clear and Transparent

Communication accessibility in medical settings can’t come soon enough. Clear masks help, but there’s also the related issue of transparency.

For Dane, all grown up now but still (much to my regret) able to recall having his ears irrigated, avoiding the doctor’s office is his standard practice. He doesn’t like worrying about being understood, or feeling like his presence doesn’t really matter. Too often, “I can’t really communicate how I’m feeling because they’re all hearing and they just assume how I’m feeling,” he admitted.

It’s not an uncommon complaint from deaf patients, even when interpreters are present. “The feeling of being talked about instead of talked to is a big concern,” Dr. Persoff affirmed. “I educate my nurses that all communication should have an interpreter in the room—no side conversations—complete transparency. Deaf patients need to feel safe in this environment.”

For parents who often function in the role of communication intercessor for their young children, what can we do to encourage the best experience for both physical and emotional health in medical settings?

Persoff encourages all efforts to promote direct communication between doctor and patient. That strengthens the trust that’s crucial to that relationship. “An interpreter should be present at all times when healthcare providers are interacting with a child who signs,” he adds.

Effective communication isn’t always sign language for DHH kids using other modes of communication. Don’t assume communication is going to take care of itself—or doesn’t require accommodations for a 15-minute doctor’s appointment. Have communication access strategies in place as you do for school. Role-play what is likely to happen if needed. As parents, our diligence in this realm has lifelong implications for our kids.

As Persoff sees it, even if that child is very young, “the doctor needs to focus on communication with the child, not the parent… even with really small children. This promotes language learning and individuation.”

It also promotes parents functioning as parents, not interpreters, which is very important during medical conversations that can be confusing. Persoff emphasizes, “Even though I can sign ASL fluently, I have an interpreter in the room because medical terminology wasn’t something we covered when I was learning sign language.”

Taking a Stand, Having Standards

For the child using sign language, “there’s no excuse in this age for a patient to be seen without an interpreter,” Persoff insists. And if a doctor’s office or hospital resists providing interpreters—or expects parents or siblings to provide that service—parents must take a rigid stand on the child’s legal rights. The Americans with Disabilities Act (ADA) applies to all medical settings.

Interpreting provides for the child’s rights, but also addresses another common concern. “When parents act as interpreters for their children, they often don’t recognize they’re “filtering” information,” Persoff points out. “As healthcare providers, we have concerns about any compromise to a young patient’s questions or concerns—especially about normal development, sexuality, even abuse. That child or teenager has a right to communication with the doctor without parents present.”

Other tips:

• Express the communication needs your child has at the time you make the appointment or, in the case of a trip to the emergency room, immediately upon arrival.
• Ask staff and doctors to use clear masks! If they don’t have any, provide them with information on how to get clear masks. While many transparent reusable cloth masks are available these days, the only clear masks approved by the FDA for medical use are the Safe’N’Clear Communicator masks (https://safenclear.com/). Some hospitals are requiring a face shield over lesser quality masks. Your medical practice may be following other guidelines.
• Request an interpreter at the time you make the appointment (not when you arrive at the doctor’s office). The Americans With Disabilities Act ensures your right to expect the hospital and/or doctor’s office to have this accommodation in place.
• Use a remote video interpreter (Ex: https://www.sorensonvrs.com/.) In fact, COVID-19 has vastly improved the use of remote interpreters because hospitals have had to get better at telehealth. But note: remote interpreting would not be sufficient for all visits, as the remote interpreter lacks a good view or full auditory access of personnel, including the patient or the procedures involved.  
• The interpreter is often positioned behind the healthcare provider so your child can see both at the same time.
• Remember: the interpreter is not your friend. An interpreter cannot legally or ethically discuss what was discussed out of the parent’s presence. Do not put an interpreter in that position.

Prescription for Parents

When our kids are sick, we often aren’t placing top priority on their communication needs. We’re usually busy jostling another kid and trying to keep the little tots from touching other sick kids in the waiting room. Besides, we need the doctor to know what s/he is doing… we don’t want to question it or bring any note of discord into the dynamic, so we often don’t even ask for accommodations.

But here’s what you need to remember. “Many physicians and advanced practice providers lack familiarity of how using an interpreter in ASL differs from interpreters of spoken languages—be patient but firm, and understand how to use interpreters yourself. Know that healthcare providers want nothing more than for your child to get the top notch care they deserve.” says Dr. Persoff.

Take that advice with every visit to the doctor’s office or hospital. Swallow it down to overcome the intimidation and anxiety we often feel in those settings. Apply it liberally knowing your child is watching the example you yourself are setting—and benefitting from it. Your child will inhale the self-esteem that permeates from such an exemplar. Take it in… know you are setting an autonomous course for your child’s wellness—in body and soul—for the rest of his/her life.   ~

H&V – Winter 2021