For once I can help someone else as so many of you have helped me. I work in Human Resources, have a daughter with CAH and can actually answer your questions. Regarding obtaining insurance once coverage ends: When you receive your COBRA papers upon termination of employment you can request a "Proof of Insurability" paper on children with pre-existing condtions. Once you go to a new employer, they may give you a six month waiting period for anything pertaining to CAH, but will cover everything else. Regarding COBRA-no you do not have to pay this in order to be insurable, but I personally did just in case something were to happen when I changed jobs. It was part of my employment contract upon hire that they would pay this for me. Regarding Life Insurance - My daughter too was denied. At my previous job they offered portable supplamental insurance which means that you can continue to pay for the coverage upon termination and the rates are VERY affordable. I pay $80.00 a year for $20,000.00 on myself as well as $5,000.00 on each of my three kids. It's not alot, but at least it's something. Hope this helps!