I was on federal SSA and State SSI, which included coverage from Medicare (feds) and MediCal (California's Medicaid program). When I started working (not a spouse but just me earning too much money), I lost the state SSI, but continued receiving Federal SSA, including Medicare and MediCal coverage. At the same time, the new Medicare prescription drug program took over and the MediCal pretty much became obsolete for me - they really only assisted with prescription coverage and with the new Medicare part D, there was really no use for MediCal anymore.
So I do think it varies by state Lynda, but from my understanding, Medicare is the primary insurance provider for people in that situation. Just because you (or your spouse) starts earning more $, that doesn't necessarily mean you've got insurance coverage. If you were already on Medicare/medicaid, you should be able to continue that coverage even if you (or spouse) are making too much money to qualify for financial assistance through SSI or SSA.
Now if you (or spouse) obtain a job that does include insurance coverage, you would need to report that to Medicare/medicaid because that new insurance should be primary. I believe you still remain eligible for Medicare though, so if anything happened where you lost your job or insurance, and you had Medicare previously, you would be able to get right back on the Medicare. It is VERY confusing and there are a lot of hoops to jump through. I may be mistaken on some of this info too - this is just how I understand it, based on the research I've done pertaining to my own situation.
Also for Emily, look into programs that may be offered through your state. They may be difficult to find, but in California we have a program called GHPP (Genetically Handicapped Persons Program) - LOL!! But they provide insurance coverage for adults with genetic diseases (like CF and Hemophilia, among other things). They act as a secondary, but for me they covered anything Medicare and MediCal wouldn't. OF course, having 3 insurances was a pain in the behind as they did fight with each other over who was going to pay for what. But it was WAY better than not having any coverage. Like others have said, there is a way. Even if it might mean moving to another state (I believe there is someone on this forum who lives in Nevada, but her daughters live with their father in CA for insurance purposes - probably for the GHPP program!!).
Sorry to be so wordy guys...I really need to blog!!