Header image  

HELPING FAMILIES OF DISABLED AND CHRONICALLY ILL CHILDREN

 
 
 
 
ADVOCATING TIPS

Protect Yourself

  • Never go to a doctor appointment alone.
  • Have the person going with you take notes on what is being discussed and who is in the room.
  • Never report the events of a previous doctor appointment. Instead ask the physician at hand to contact the previous doctor for a better understanding.
  • If possible, encourage your child to talk to the doctor about what he or she is experiencing and how often they experience it, to the best of their physical and mental ability.
  • When your child is in the hospital do your best to have others stay with your child periodically and have them take notes on everything that occurs while there.
  • If your child's disability and/or disease is in question, always refer to it as suspected and NOT diagnosed. Better yet, if there is any question, do not answer. Instead refer the doctor to the physician or facility that brought it to your attention. (It is the physician's responsibility to clarify and confirm-NOT YOURS!)

 Protect Your Family

  • Never make a major medical decision about your child without the presence of your spouse, family member or even a trusted friend.
  • Always require copies of any written appointment report (it is your legal right). Review and make any corrections necessary to discrepancies that you observe in the report. Contact the office or facility and ask that the corrections be made immediately and a new report rendered so as to prevent a cascade effect of miscommunication between physicians and/or parents.
  • Do your best to involve third parties in your home life either through friends, neighbors, or even agencies to ensure that you have others observing the reported symptoms in your child.
  • Never be the only one caring for your child! Encourage your spouse to be more involved, and if a spouse is not an option, turn to friends, extended family, or even your local church.

 


 
RESOURCES
 
DONATE!
 
           
©2016 Jonah & The Whale Foundation, Inc. • Telephone: 1-877-49-JONAH (56624) • Fax: 724-772-4998