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Inaccessibility in the Hospital: The Adventures of My Daughter’s Fourth Eye Surgery

May 20, 2016 • Darrell Shandrow Hilliker

My four-month-old daughter is sleeping, so, in belated celebration of Global Accessibility Awareness Day, I thought I would describe our experience with her fourth Glaucoma surgery from an accessibility point of view.

Before I get started, let me say that I think Phoenix Children’s Hospital always treats my daughter very well and provides her with excellent care. I also believe the staff at the hospital do the best they know how to make the experience as accessible and pleasant as possible.

Allison, Allyssa and I arrived at Phoenix Children’s Hospital one hour before Allyssa’s scheduled surgery start time of noon. As we have done with previous surgeries, we contacted the hospital’s Language Services department to request accessible, electronic copies of Allyssa’s discharge instructions and medical records. As has been the case for previous surgeries, we agreed to receive a secured email containing the discharge instructions prior to leaving the hospital, followed by the remaining records tomorrow.

In order to check our daughter in for surgery, I initialed and signed several pieces of paper, including consent, financial responsibility and health insurance documents, without fully reading their contents. The person at the front desk simply provided me a one- or two-sentence summary of each document. There wasn’t enough time to fully read each piece of paper.

A screen in the waiting room displayed the status of Allyssa’s surgery, without any alternative means of independently obtaining the same information.

When our daughter had recovered sufficiently to be discharged, an initial miscommunication almost resulted in our failure to receive the promised accessible instructions. It was difficult for the nurses to understand why we were insisting we could not simply wait until tomorrow to receive our discharge instructions from medical records. Advocacy and awkward conversations with supervisors were required in order to make sure we received the same instructions regularly afforded sighted patients without incident.

In this case, everything turned out fine. No service was denied, Allyssa recovered without incident and we went home with accessible, easy-to-read follow-up care information.

So, you may ask, why am I bothering to write about this incident if, in the scheme of all things inaccessible, this situation enjoyed a happy ending? I am doing so to point out the difference between accommodation and accessibility, and to suggest ways of implementing realistic solutions that value and serve the needs of everyone, including people with disabilities.

As things stand right now, when Phoenix Children’s Hospital receives an accessibility request like ours, it is handled through the Language Services department as an accommodation, similar to situations where a translator is needed in order to help someone who does not understand English. In that framework, my requests for universal accessibility are met with shrugs, because I appear to be asking for nothing less than a perpetual universal translator to automatically convert all printed materials into Braille on the fly. Obviously, I am not requesting such an unrealistic solution, but my inability to successfully communicate this fact to those who may be able to change things for the better means overall accessibility for all patients remains at a standstill.

So, now that we know what’s not wanted, what would represent a better solution that embraces true accessibility, rather than just slapping on another Band-Aid?

I am asking Phoenix Children’s Hospital to make the following changes in order to improve the accessibility of their services for everyone:

  • Insure all the hospital’s websites, including bill pay and patient portal, meet internationally-recognized accessibility standards such as WAI-ARIA and WCAG and undergo regular user-acceptance testing by a diverse group of stakeholders for ongoing accessibility.
  • Insure the secure email system is being operated by a vendor with a deliberate, publicly stated commitment to accessibility.
  • Implement techniques to create or generate all PDF documents in ways that meet Web Content Accessibility Guidelines (WCAG).
  • Provide accessible display screens and kiosks, or supply similarly proactive alternatives, such as smart phone apps and text messages, that work for everyone, including people with disabilities.
  • Enact clear policies and procedures for positively and proactively handling accessibility requests from employees, patients and the general public as appropriate.
  • Train staff to value accessibility and understand the difference between it and reasonably accommodating a request for a service such as language translation.