When Silence Isn’t Safe
When the stakes are highest, why do so many of us stay silent?
In medical encounters - where communication can determine safety, outcomes, even survival – people with hearing loss often hesitate to disclose their needs and request accommodations. I know I did.
Several years ago, I co-created the Communication Access Plan (CAP). I believed in its value, yet I used it inconsistently for my own appointments.
My hesitation came down to three familiar concerns:
The time required to complete and distribute the CAP
Discomfort asking already busy healthcare staff to do more
The possibility that requested accommodations might not be provided - even with the CAP
The CAP
In our previous blog, Does Advocacy Matter?, I described a largely successful outpatient procedure. What became clear afterward was how pivotal my use of the CAP had been.
A CAP is more than a tool. It also helps to:
Create awareness about the prevalence of hearing loss
Convey the lived experience of hearing loss
Strengthen patient-provider collaboration
Reinforce the importance of communication accuracy
Connect communication access to health outcomes.
Completing and Distributing the CAP
When completing the CAP, visualize your entire appointment - from check-in to discharge. Anticipate communication barriers and identify the supports that will work best.
Distribute the CAP widely. Upload it to the patient portal, share it with the hospital ADA coordinator or patient services, and provide it to clinicians and nursing staff. Ask staff to enter your CAP into your Electronic Health Record (EHR).
Follow up to confirm receipt. Persistence is critical.
What Worked - and Why
Several elements made the NYU experience successful. While not every accommodation included in my CAP was provided, the most important impact of my efforts was that there was consistent awareness among staff. From start to finish, staff knew I had hearing loss and understood that communication access mattered.
Because of that awareness, I was acknowledged and able to actively participate in my care. When communication gaps arose, staff did not disengage – they adapted. Workarounds were created, preventing breakdowns that could have compromised safety.
A Modest Change with Outsized Impact
A tablet. Clean. Simple. Effective.
The tablet provided by NYU has the potential to be a gamechanger for patients who rely on written communication for accuracy and safety. Issued at intake and used consistently through discharge, the device could provide seamless communication across the entire continuum of care.
Equally important, as the tablet transfers from one staff member to the next, it serves as a visible, persistent reminder: this patient has critical communication needs.
Advocacy – Moving Towards Systemic Change
Until communication aids and services are fully embedded as standard practice in healthcare systems, tools like the CAP remain essential. They are not matters of convenience or personal preference – they are mechanisms for accuracy, patient safety, and informed participation in care.
Healthcare with Hearing Loss urges all patients to complete a fillable CAP, upload it to the patient portal, and submit a CAP for every medical encounter. We urge providers to expect, accept, and act on the CAP as part of routine care.
Imagine the impact: If just 20% of patients with hearing loss submitted one CAP per year, hospitals would receive more than 14 million accommodation requests. That volume would make communication access impossible to ignore.
Be the 20%.
Toni Iacolucci
In our next blog, Normalizing Communication Access, Silvina de la Iglesia, former Assistant Director of Language and Disability Services at Mount Sinai Health System, joins us to discuss how hospital leaders and frontline staff can embed communication access into everyday patient care.
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