You and I are in the same mode and that means we have to sometimes advocate untill we are exhausted to get care for our disabled loved ones.
I've done plenty of it believe me especially with my state. People can not understand catastrophic illness till it happens in their family. I don't care how good of insurance you think you have it's not good enough. Most employers discontinue coverage after 30 days missed worked and the persons insurance is lost upon discharge from the hospital. That leaves you with Medicaid and Medicare.
Our state put Medicare into a semi Universal Health Care system for the state and things really got bad. At one time she was over eight months without a doctor and the prescriptions nearly ran out.. Nobody would take her as a patient because they got less money than even a Medicaid patient.
That got a whole lot better about 5 year ago with a new governor who demanded accountability and cleaned up the corruption. I will say this when I take on our HMO I win :>}