Those non-compliant parents

I am on a personal mission to ban the use of the term "non-compliance" except in those instances when someone is under a court order or other legally required agreement to comply with something. Boy, we professionals are simply entirely too free with that term; we throw it around judgmentally too often before we have the facts.

True story:

A parent referred to my program with a very complex child with multiple disabilities. Reason for referral: non-compliance with medical treatments. In addition to his regular pediatrician, this child sees:

~~physical medicine
~~neurology
~~cardiology
~~gastroenterology
~~pediatric surgery (G-tube and post bowel surgery)
~~ophthalmology
~~pulmonology
~~PT
~~OT for "feeding therapy"
~~wheelchair clinic

In addition, his mother speaks no English, has no car, and only occasionally a phone. And...no Medicaid. Needs O2, feeding pump, dressings, AFOs...and more.

Now, I'm not going to bore you with all the details of a case manager's life, getting all this under control using interpreters and getting him on Medicaid, teaching mom how to call for transportation, make a schedule, what all this "stuff" means, how to get his durable medical equipment delivered, how to care for it, and all the other things I do all day. Mom and I have sort of gotten things together over the last couple of months. The medical and related hospital providers are now happy with my compliant mother.

On Monday, I received a call from the child's school, where he is enrolled in a special education program. Seems he has been missing an awful lot of school, and mom has been telling them "he's been going to the doctors"-which, with so many absences, they find hard to believe.

Mom is now, in short, non-compliant from an educator's point of view.

Just a little window on the world of parents raising complex children with special health care needs.

mary