Kids and Health Care: When Your Child Needs Special Care Introduction
Some of the most disturbing news that any parent or guardian can get is the solemn words from a doctor, "I have bad news about your child."
A child's serious illness or injury seems like life's worst unfairness. Because kids have so much more of their lives in front of them, the impact of health problems is even greater than it is for an adult. (This is a concept even insurance actuaries understand.) However, for this very reason, your role becomes even more important when your child has a special health care need.
Your first response to finding out that your child has a medical condition will probably be emotional -- fear of the consequences or anger over the harsh randomness of fate. This is natural and usually eases with time. But, until it does, seeking out support from others who've experienced what you are often helps. Your doctor or hospital should have some information about groups of parents in your area who have children with the same condition.
The other thing to do is educate yourself about your child's condition. Start by asking your child's doctors lots of questions; and keep a written record of the answers. Many parents who've lived through children's health crises recommend keeping a binder -- filled with pages of the questions you've had and the answers you've been given by whom. And keep information from the money-side people as well as the health care providers. Knowing who said what to you and when can be useful for settling disputes with insurance companies, managed care plans, state agencies, etc.
Also, ask for second opinions...again, from both providers and payers. One of the great secrets of health care is that it's more negotiable than lay people think. This applies to the treatments or prescriptions a doctor suggests to the settlements a claims manager is willing to make. People who don't work in the business sometimes accept first offers because they'd rather have an easy answer than the right one. As your child's primary advocate, you can -- you must -- demand more.
Once the initial emotion of learning about a child's health problem recedes, you'll find out pretty quickly that administrative issues...and paper-work...will be an even bigger part of your life. And this is true whether your child has traditional health care or is enrolled in a state program. You'll probably also find out that kids are resilient, both physically and psychologically.
As time goes on, you may find yourself serving as the main contact point among various care providers and business-end people. You'll know more about your child and his or her condition than some professionals...and you may have to get used to bringing care-givers up to speed. Some people find it frustrating to be in this position; but you can turn it into an advantage. By playing an active role in your child's care -- and letting everyone know that you're going to -- you can improve the quality of care he or she gets.
The silver lining to childhood health problems is that many conditions that were fatal even a decade ago (cancer, especially, comes to mind) can be managed as chronic conditions, if not cured, today.
In fact, for children -- just as for adults -- medical advances have given most Americans the luxury of turning their health care attention from fatal conditions to chronic ones. This is one of the several reasons that many kids are treated for conditions like Attention Deficit/Hyperactivity Disorder and food allergies. The resources are generally available for handling any special medical needs your child may have. You just need to know how to get them and, once you've got them, how to manage them.
In this chapter, we'll take a quick look at several common diseases and conditions that affect children -- and how the U.S. health care industry deals with each.
