General Tips for Insurance Coverage

Health insurance coverage is a major issue for families and individuals dealing with medically complicated children and adults. Since insurance programs vary so widely from one state to another, one insurance company to another and one country to another, this section provides only general recommendations.

1. Understand your policy – Familiarize yourself with the healthcare insurance coverage offered by your current policy. You will be in a far better position to advocate for yourself if you have spent time getting to know the basic elements of your plan, including:

• Eligibility requirements (who is covered under what circumstances)
• Benefits (which services/treatments are specifically included or excluded and what are the limits on the coverage provided)
• Regulatory information (who is responsible for enforcing the provisions of the plan, and to whom would appeals be addressed if needed)
• Grievance procedures (what is the grievance/appeal process)

2. Case Manager – Request a case manager. This person will become familiar with your particular case (or your child’s case) and help expedite claims. A case manager also will save you from having to repeat yourself over and over again explaining the severity of the rare disease to a new person each time you call.

3. “No” means ask again – Many insurance companies will deny coverage as regular practice simply to protect their bottom line because nine out of 10 people become so overwhelmed by the process they simply give up and the insurance company saves money. Often, when a claim is denied it actually means “ask again.” A case manager can help with this process.
For 8 Steps to Effective Appeals visit: http://www.patientrights.com/care/how.htm.

4. Other Resources – There is a variety of resources available to help you navigate the challenges relating to insurance, including your state's insurance commissioner's office www.patientrights.com/links/links7.htm, and Georgetown University maintains a website that describes health insurance options in each state www.healthinsuranceinfo.net.