Always request a copy of your health insurance policy, not the benefits summary brochure. The brochure is not specific enough. Remember, the insurance company works for you. You pay them to provide a service. There are numerous private and non-profit agencies which may be able to help out.
Many organizations deal only with a specific disability or illness.
If they can't help you, always ask if they can refer you to another organization who might be able to help. Become an advocate for your child. There are many families and organizations who will be glad to talk with you and help you with information and support. Don't forget books, videos, and even websites. Listed below are a few resources to get you started.