Thank you MoAT (the Missouri Assistive Technology program) for helping individuals with communication disabilities prepare for an unexpected hospitalization during the pandemic
Going to the hospital on any day can be stressful. Communicating in a fast-paced environment when we don’t feel well can be especially challenging. Take time now to consider what you will need to take with you if you go to the hospital and how you will communicate with doctors, nurses, and other health care staff. This guide is intended to help you get ready for a hospital visit during this pandemic, particularly if you or someone you care for is nonspeaking or has speech that is difficult to understand.
By law, hospitals must give services that help you understand what is being said and are supposed to ask you what services you need. The hospital during the COVID-19 pandemic may be very busy, however. Currently, many hospitals are seeing a large number of patients and often do not provide the same services you normally expect. Learn your rights as a person with complex communication needs.
Doctors and nurses in hospitals wear masks and gloves and may talk to you from behind a window or curtain. It may be harder for you to understand them. Many hospitals discourage in-person interpreters, family members, or visitors to come into the hospital. You may be alone for a long time when you are in the hospital. Here are some ideas to help you prepare:
Put together an emergency bag with items you need to communicate
Label the bag and items with your name and be prepared to wear it on your person to keep it with you in the hospital. Leave space on the label to add your hospital room number.
The emergency bag might include:
- Your emergency health information including health insurance cards, state ID, list of allergies, preferred treatment, medical providers, and medications.
- Your primary communication device (e.g. speech generating device, tablet or smartphone with communication apps). Prepare relevant page sets on your device so you can communicate information about you, your needs, etc.
- A back-up communication device (e.g. communication board, pen & paper, see below).
- Plugs and chargers.
- A cellular hotspot in case the hospital does not have WiFi or it is not working well.
- An extension cord or power strip in case your bed is far from the outlet.
- Extra batteries for your assistive devices.
- A copy of your advance medical directive, if you have one. You can find more information and instructions to make an advance directive on AARP’s website
- Emergency contact information for family members or friends.
Disinfect your devices and related items
There are valid infection control issues for why a hospital might not let you bring a device, tablet or cell phone into an ICU or other medical environment. Devices, however, can be effectively disinfected without damage to the device. Every hospital has an infection control officer or specialist. Ask them for help, if needed.
Document your need for AAC
Upon arrival, the hospital staff or emergency room medical team needs to know how you communicate. You may need to demonstrate that your communication device is essential. Consider preparing a document such as a card or a paper that states your name and date of birth, along with a sentence that says you rely on AAC technology and what works best for you to communicate (e.g. an iPad with Proloquo2Go, a NovaChat, etc.) Prepare a Patient Accommodations Request Form before you go. If you have a medical ID bracelet that lists your need for AAC, show it.
Ask the hospital for an AAC consultation
Ask for a hospital speech-language pathologist to evaluate your need for AAC. Ensure that the hospital’s speech therapy department is notified that someone with complex communication needs has been admitted and will need support. You may still be denied the right to bring your AAC into the hospital due to the nature of the current emergency. If the hospital staff refuses to talk with you or respect your wishes, ask for an “ethics consultation.”
Prepare your back-up AAC option
As part of your preparation, spend time preparing a back-up AAC option. If you don’t have access to your usual tablet or stand-alone AAC device, then what can you use as an alternative?
Most hospitals provide generic laminated communication boards. Using an unfamiliar, light-tech board is an acquired skill, for both you and your communication partner. If you communicate by selecting letters, your communication partner will need to be able to keep up with the speed with which you select them. Practice selecting letters while someone else writes down your selections.
If you communicate by pointing to symbols, then unfamiliar symbols in unfamiliar locations will be a challenge. If possible, take a screenshot of your current AAC and print it to bring with you. Even better, laminate it. The familiar display will be helpful. You can also download, print and practice using the Crescendo Core Word board or choose among these free communication tools for patient-provider communication.
It is possible that if you are admitted you will be alone and not have anyone with you who understands your communication needs. Preparing now, before you are sick, is important!