I'm self employed, with CF, and use GHPP:<a target=_blank class=ftalternatingbarlinklarge href="http://www.dhs.ca.gov/pcfh/cms/ghpp/
">http://www.dhs.ca.gov/pcfh/cms/ghpp/
</a>
It's a state funded insurance for people with CF in California. No regular insurance provider will cover self employed folks with CF. Not that I've found anyways. The only way is through a group plan which is only offered through employers.
I've tried asking what it would cost me with a regular insurance provider, and they wouldn't even let the conversation get that far. They just said, "No sweety, we can't cover you. Good luck."
Unfortunately, I don't have any nice answers for you unless you lived in CA. <img src="i/expressions/face-icon-small-sad.gif" border="0">
If you find a secret to it all, please do tell!
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Edited ---
I just realized that it's your daughter you're talking about, not you or your husband wcf. I don't have experience with that scenario, but I'm not sure the answer will be too different. I'll be interested to see what others say.