Even the ‘Nonverbal' Have a Voice

We became good friends through school growing up. One of us, Kayla, has cerebral palsy and is allegedly nonverbal (although she has so much to say). The other, Alexis, is an emergency medicine doctor at Yale.
In a world in which people with disabilities are not granted full access, and sociocultural barriers make friendships like ours less common, we are grateful for the opportunity to understand each other's perspectives. Through our conversations about our experiences working in and seeking care from today's healthcare system, we have developed a unified and important ask: Please make sure that patients who might be considered 'nonverbal' due to cerebral palsy or other disabilities that affect communication — such as autism and aphasia — have a written communication plan documented in their electronic medical record.
First, the communication plan should specify who needs to be involved in medical decision-making: whether the patient has an appointed guardian or can represent themselves. People often assume patients with a disability cannot make their own medical decisions. However, disabilities range in their symptoms, and many patients diagnosed as nonverbal can self-represent.
Regarding cerebral palsy more specifically, studies demonstrate only 45% of those with the condition also have an intellectual disability. Intellectual disability itself has varying degrees of impact on a person's capacity to make decisions. While the policies regarding guardianship vary by state, approximately 30% of people with developmental disabilities who do not have a coexisting intellectual disability have an appointed guardian and the other 70% self-represent, according to the National Association of State Directors of Developmental Disabilities Services. Whether a patient has an appointed guardian depends on many factors, including the policies of their state, communication skills, family support, and the degree of intellectual disability.
Communication plans should also provide guidance about other modes of communication beyond face-to-face interactions, such as phone calls and MyChart messaging. For example, Kayla finds it cumbersome that her vocalizations are sometimes required in phone calls even if it's simply to schedule a routine appointment: Heck, do they even know it's truly me if I'm just using an app to narrate my voice?
From the physician perspective, Alexis knows it can be uncomfortable and challenging to figure out if a patient has a guardian and how to best communicate with the patient, especially during an emergency. She once took care of an adult with cerebral palsy whose mother insisted on speaking for him, as if he were still a child. Alexis mistakenly assumed his mother was his guardian (although she should have known better due to her friendship with Kayla). Noticing the dynamic, the patient grinned, then he flipped his mother and Alexis the bird. After Alexis apologized, he told her he always has this problem with doctors because he relies on his mother to drive him to appointments but resents how she tries to speak for him. A documented communication plan in the medical record would have prevented this injustice.
In contrast, Kayla notes she does not have a guardian and represents herself, but her mother accompanies her to most of her appointments, and she trusts her mom to interpret without overstepping. Kayla believes it would be so much easier if their dynamic was clearly indicated in the medical record.
A written communication plan should specify:
Whether the patient can self-represent or has a guardian The patient's preferred communication methods, including any aids they use and where to find them. Aids may include augmentative and alternative communication devices, such as a tablet or picture board, as well as other approaches such as grimacing, yes/no questions, sign language, typing, and other strategies. For example, Kayla uses the iPad app Proloquo2Go and fingerspells. The written plan should also list other communication methods if the patient's preferred tools are unavailable Name and contacts of people who understand the patient's communication and can help guide staff if needed Sensory sensitivities that may impact communication. Some patients get distracted by bright lights or loud noises For patients with limited expressive communication, a list of patterns of behavior and nonverbal cues that might indicate their needs, such as grimacing when in pain or opening their mouth when hungry
Here's our shared vision for a sample written communication plan: 'Patient has cerebral palsy. She makes her own medical decisions and self-represents. Her preferred methods of communication include using the Proloquo2Go app on her iPad, which is attached to her wheelchair or stored in her bag. If unavailable, she fingerspells. She vocalizes in short phrases when needed, but other methods allow her to more effectively communicate. In an emergency, please contact her mother [contact information]. Other people who fully understand her communication modes and with whom she feels comfortable speaking openly about her health include [names, contact information]. Please do not share any information with other people.'
We agree that the relationships formed between patients and healthcare workers are among our most valuable resources. Having a written communication plan allows everyone involved in caring for patients considered nonverbal to provide the highest quality compassionate healthcare. We do not want to see precious time wasted on re-establishing ground rules for communication when this information should be readily available for everyone involved in their care, from doctors and nurses to medical assistants, pharmacists, social workers, and receptionists. Every patient deserves equitable care, and our time together is best spent addressing medical needs.
While some electronic medical records allow comments about accessibility, these often end up buried somewhere in hyperspace, such as under a Media tab or some other equivalent of a virtual junk drawer. Instead, we hope to see a link to the patient's communication plan, as well as any other helpful accommodations, easily visible on the face sheet for any healthcare worker who opens the chart. We also recommend that patients with disabilities bring a copy of their communication plan in case a healthcare worker cannot access it.
With a little intentionality, we all have the power to improve our communication with each other.
Kayla Ireland is a co-author of the book , 'Living with Cerebral Palsy.' She also hosts the podcast 'Kindly Neurodivergent with Kay.' She advocates for the limitless potential within every individual.

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