Stay Up to Date! Like us on Facebook  and Twitter  for the latest news and announcements    

Beyond the Bracelet: Tools for Communication and Safety


What would you do if you were suddenly unable to speak for yourself?  How would you share your diagnoses, medication list, allergies, or advance directives with your caregivers?  The most common way for people with disabilities or health conditions to share this information is through an engraved bracelet or other piece of jewelry which can quickly be identified as a source of emergency medical information.  This article provides information regarding communication tools that can convey personal, medical, and financial information in a level of detail that goes Beyond the Bracelet.   


Health Care Proxy  If you are unable to make medical decisions for yourself, who would you like to speak on your behalf?  Advance Directives are documents that enable you to appoint a Health Care Agent, usually a trusted relative or friend who is aware of your personal health care wishes and who can make decisions for you.  This link, “Do Your Proxy dot org” offers free health care proxy and living will documents that are recognized in most states. 

Everyone, regardless of current health status, should strongly consider filling out a Health Care Proxy form.  The Health Care Proxy is only activated while you are unable to speak for yourself.  You regain control of your medical decision-making as soon as you are able.  If you change your mind and want to appoint a new Health Care Agent, simply destroy the old form and complete a new one.   Please note that a Health Care Proxy is not the same as a Living Will.  Information about Living Wills, organ donation, Code Status and MOLST (Medical Orders of Life-Sustaining Treatment) can be found by clicking on each topic.

Take Charge, Not ChancesMany individuals with neuromuscular diseases require Pressure Support Ventilation (such as CPAP or BiPAP) while sleeping.  “Take Charge, Not Chances” was assembled by the International Vent Users Network through a grant from the Christopher and Dana Reeve Foundation.  IVUN’s purpose for creating the “ Take Charge, Not Chances” individualized care portfolio is to “Assist ventilator users, their support persons, and their health professionals who treat them to perform their respective roles during a medical emergency with fewer complications, increased confidence, and more successful outcomes.” 

File of Life  The File of Life is a card that fits into a magnetic plastic pouch that you put onto your refrigerator.  By keeping your health information current and readily available, EMS and other health care providers will be aware of your health conditions even if you are unable to speak for yourself. 


Emergency Financial First Aid Kit:    When a single parent, head of household, or individual living alone experiences a health emergency, it can be extremely difficult to maintain financial stability.  The EFFAK is a simple tool designed to assist you and your family in situations that you are unable to manage your financial situation without assistance.  By organizing the most important financial documents, responsibilities, and benefits, you can easily direct a family member or friend to assist you until you are able to resume financial tasks as usual.