Why “Health Passports” are so important for family caregivers of children with disabilities

- - - - - - - - - - - - - - - A recent article in the Wall Street journal, “Patient ‘Passports’ Make Sure People With Complex Cases Are Heard,” mentioned that, “Like a standard medical record, the patient passport has basic data such as medical diagnosis and prescription drugs. But there are also places where the patients provide the information, such as how they cope with health conditions and the activities they need assistance with, as well as their concerns about being hospitalized and their quality-of-life goals for after discharge. They may request counseling to help deal with illness, understand medical terms or discuss end-of-life care.” 

 

What is a Health Passport?

A Health Passport contains many pieces of health information.  An excellent sample for children with disabilities is “My Health Passport.”  This simple form includes: 

  v  Medical history summary

  v  Medications

  v  Allergies

  v  Pain management

  v  How the Child Communicates

  v  Mobility Needs

  v  Dietary Needs

  v  Ideas for Comfort 

 

How Can a Health Passport Help Children with Special Needs?

The WSJ mentions that in general it helps families communicate with health providers and also reduces the feeling of powerlessness.  This is particularly important for children with special health care needs who may feel they have no control over their own health.  My Health Passport allows the child to either fill out the form, or with help, state his/her likes/dislikes.  It will also reduce behavioral issues which can affect medical care.  For example, my daughter would get so upset during medical procedures in ICU that it affected her heartrate.  So we consulted with her developmental pediatrician and developed a behavioral plan for my daughter who has autism while she was in the hospital with important information that is in her permanent chart.   

 

The Health Passport can even help reduce medical errors, preventable rehospitalization, reduce costs, and most importantly result in better health outcomes for children and youth with special needs.

 

Resources:

Wall Street Journal:  “Patient ‘Passports’ Make Sure People With Complex Cases Are Heard” http://www.wsj.com/articles/patient-passports-make-sure-people-with-complex-cases-are-heard-1422918741

My Health Passport

http://flfcic.fmhi.usf.edu/docs/FCIC_Health_Passport_Form_Typeable_English.pdf

Spanish

http://flfcic.fmhi.usf.edu/docs/FCIC_Health_Passport_Form_Typeable_spanish.pdf

Remain Hopeful,

Lauren  

Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.