Planning ahead for communication can help increase safety and control for pALS with speech impairment. Do you have your safety and emergency plans ready? Do you need to compile your safety toolkit?
Alerting
Ensure that you have reliable ways to get the attention of family/caregivers that are in your home and family/caregivers or medical/emergency responders outside of the home. Your current communication methods, motor skills, and lifestyle/routines may dictate which style of call bell and medical alert system you choose to use, and you may need to adapt or change what you use as time goes on. For in-home alerting, various models of call bell systems are available commercially and may include repurposing wireless doorbells, purchasing off-the-shelf call bells, or customizing adaptive call bells to use with accessible switches for your motor skills. Medical alert systems are paid services that usually provide a device to activate a call to a dispatcher who can call emergency responders or designated caregivers/contacts.
Communicating with first responders or helpers
How will you communicate your needs to unfamiliar helpers in an emergency? Prepare a Communication Passport, which includes your basic information, communication needs/preferences, and printed communication boards, or print and fill out the Medical Information Tools from the ALS Association. Become familiar with and print an emergency communication board (such as this one from the Temple University Institute on Disabilities). If you have a speech generating device or app, program key emergency-related phrases ahead of time. Medical identification bracelets and cards (and through state ID cards through the Michigan Secretary of State starting in July 2021) may also reduce others’ unfortunate confusion of speech impairment with intoxication.
Communication “Go-Bag”
A general “Go-Bag” is an easily accessible supply of emergency goods, tools, and documents. It is essential to include communication-related items for those with speech or communication impairments. Some version of your Communication “Go-Bag” may be good to keep on hand in your vehicle and to take if a hospital trip is necessary. Items to include:
Low tech communication board/strategy with instructions for use
Communication passport and/or written information about your diagnosis and communication needs, emergency contacts
Copies of speech generating device registration, warranty, etc.
Back-up of speech generating device pages and vocabulary/phrases
Advance directives
Extra charged batteries and/or a solar charger for your speech device/tools
Extra reading glasses or hearing aid batteries for those who use them
Safety Plans
Safety and emergency plans will depend on your personal and family situation, location, and needs. However, building a support network familiar with your needs and making sure you have the right back-up equipment are essential parts of a safety plan. Check with local police/fire/emergency management offices to see if they can keep your information on file in case they are responding to an emergency at your residence. Many pALS rely on electric medical and communication equipment, and maintaining a power source during outages is often a high priority.
FTD
Additional safety considerations are usually needed for pALS with FTD. Having predictable routines, the appropriate level of supervision, chair or bed alarms, and setting up the environment/home appropriately to remove distractions and hazards, are all ways to increase safety. Ask your clinic and team about specific considerations in your individual case.
For more information on improving communication while living with ALS, talk with your speech language pathologist and clinic. Patients of the Susan Mast ALS Foundation can find out more about communication tools in our loan closet and support from our speech language pathologist, Natsumi, at natsumi@susanmastals.org or 616-622-3066 ext. 4.
Additional Online Resources:
https://www.temple.edu/instituteondisabilities/eprep/planning-personal.html
https://aaccommunity.net/2018/09/emergency-preparation-for-aac/
https://praacticalaac.org/praactical/emergency-preparedness-for-the-aac-family/
https://www.temple.edu/instituteondisabilities/aacvocabulary/e4all.shtml