Why “Health Passports” are so important for family caregivers of children with disabilities
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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:
vHow the Child Communicates
vIdeas 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.