Letter to Public Health Ontario: Create uniform protocols for disabled patients’ communication access

Dear Public Health Ontario:

We are writing to ask Public Health Ontario to follow the lead of California and other jurisdictions by putting protocols in place to ensure safety for patients who require an assistive communication device (AAC) or a support person for communication when admitted to hospital or visiting a clinic.

The California Department of Public Health has recently put such a protocol in place, by way of an All Facilities Letter. The letter specifies:

“That health facilities may permit a support person to accompany a patient for whom a support person has been determined to be essential to the care of the patient (medically necessary), including patients with physical, intellectual, and/or developmental disabilities and patients with cognitive impairments.”

Preventing a Care Crisis
We need communication access guidelines for Ontario hospitals, now. Currently, every hospital has its own unique approach to whether a non-speaking disabled person will be able to access their communication device or support person.

This leads to crises that could be easily prevented. For example last week, staff at Toronto Grace Hospital shut off patient Tommy Jutcovich’s AAC device, which he uses to communicate, calling it a “surveillance tool.” Tommy, who cannot speak due to a neurodegenerative disorder, was not able to communicate with staff or engage in his daily prayers without his AAC.

At some hospitals, disabled adult’s crucial support workers have been turned away. This can escalate health and safety risks. As the Autistic Self-Advocacy Network writes, some patients “may have trouble communicating, understanding what is happening, or even being able to do basic things like eat or use the bathroom.” Yet there is no uniform standard to ensure this support during the COVID crisis in Ontario.

We recognize that some visitor limits are important to help prevent the spread of COVID-19, but we also know that there are proven best practices to maintain safety while admitting crucial support workers for autistic, intellectually disabled people, and those with other disabilities. 

A Uniform Guideline
Right now, each hospital in Ontario has a different AAC policy and each takes its own approach to whether and when to allow disabled people’s support persons entry. There are also no guarantees of whether a non-speaking patient will have access to their communication device (AAC), because the decision is up to the individual health providers working on that particular shift.

We are hopeful that the Government of Ontario will review best practices and quickly develop a guideline that builds on California’s model, to create a safer, more compassionate setting in every hospital across the province. Communication is a right and there are safe ways to ensure this right is protected.

Thank you.

Autistics for Autistics, Ontario