a few years ago, when I first could no longer work, but could not yet get Medicare becuz you must be on soc sec disability 2 years before you get your Medicare, me and my kids did not have insurance. At that time our soc security benefits took us just barely over the income cut off for even just our kids to get Medicaide. It was a horrible time for us, my medications were rather expensive, so were my daughters, - they cost far more than our income even was in a month. We did get prescription patient assistance at that time, and we depended on clinics and charity funding etc, but also accrued some ugly medical bills. I found out at that time, that my RA and Lupus made me "uninsurable" here, and my daughters bipolar made her uninsureable and my sons diagnosis'es also made him uninsureable. We could NOT purchase insurance thru standard public insurance companies here. If I had been able to work, I would have been able to get coverage thru work for us, if my job offered it, but, I could NOT purchase it on my own at any price.
I did find that at least in IL there was a program called IIRC CHIP for people with a verifiable diagnosis that made them uninsureable, thru the state. BUT the coverage for mental illness and neurological illness was not equal to coverage for other illnesses. And you bought it per individual. In order to get it, you had to have confirmation of an uninsureable illness, IIRC. The cost, in my opinion was rather prohibitive, and it had typical deductions and co pays etc. For my difficult child, the cost, IIRC was going to be in neighborhood of $600 a month, for my son, approx $500 per month, for me, $600 a month and my easy child would not have been able to get this particular coverage at all- so SHE would need to get insurance via standard purchased insurance. well, need I say, with both me and husband on soc sec disability, husband already for several years, and me coming from a min wage job, there was no way we could afford that.
Eventually our state upped the income cut off for the KIDS to get coverage thru the state, but what we then found was that in our geographical area, at least, Medicaide turned out to be nearly worthless. Docs would not accept it becuz it took too long for them to be paid by the state, and even our ER handled Medicaide patients far differently - now, I KNOW this is not right or fair or legal, but- when you show up in ER via ambulance and are released with no XRays done at all, no broken bones set, or whatever, and hospital simply continues to say they see no need, it is NOT a good situation.
When difficult child turned 18, she was unable thus far to function enough to hold a job, still does not have a HS diploma, can barely leave house, so she did get soc sec disability, disabled before age 18, and then she was able to apply for Medicaide, and she did get that. Altho, again, we have been searching for a doctor to take her into care for 18 months with no luck so far. When we have tried going into the city, we have been told we are living out of their service area. Locally our docs simply refuse to accept it.
I have my Medicare, now.
For us, we were lucky becuz my husband military bens FINALLY kicked in after fighting for them for 10 years- he is permanant total service connected disability, and after x years of that classification, his family is awarded coverage thru ChampVA medical. Altho they are still in appeal over disabled before age 18 daughter, my easy child and son get that coverage, now. (until age 18) We pay no premiums, if we have no other coverage we can go onto military base for care for no cost, or it can be used as typical insurance with co pays and deductibles similar to any other insurance (80/20) and it works as a primary coverage with my Medicare being secondary for me, altho I cannot go to military base for care. It comes with a mail in medication program, where medications are at no cost to us at all if we use the medication by mail, altho it takes up to 5 weeks to get our medications, and they cannot be faxed or phoned in, they must be snail mailed in and are snail mailed out. This has been a great help, becuz my medications alone cost approx $4,000 a month, now. LOL, that is more than we bring in in a month for the whole family.
SO, in IL there are many diagnosis'es that can prevent someone from being able to buy standard insurance on their own. Most auto immune disorders, many neuro disorders, many psychiatric disorders, cancers, etc can prevent someone from getting standard individual insurance coverage, they are "uninsureable" and many illnesses do not have insurance parity, meaning they are not covered to the same degree as other illnesses. even in standard insurance here, the limits and coverage for mental illness and neuro illness is less than for say, a broken arm.
SOme states have programs that have waivers for certain issues, so certain circumstances can be covered thru a state medical coverage, coverage for AIDs is one that jumps into mind first. I believe coverage for something like TB also can be covered thru the state without a lot of rigamoroll.....and Ie read of other thngs that can get waivers so as the patient can get coverage. SO far, I do not hear a lot of problems if a job offers group coverage, it seems that still so far if there is group coverage offered, even the otherwise "uninsureable" can get coverage THAT way.
More and more states are trying harder to find ways to get coverage to larger groups of people who for a wide variety of reasons do not have coverage, but, I am sure this is going to be a long term problem. Some of our difficult children are going to be able to hold jobs, some of their jobs will come with option to get medical insurance thru a group plan at their job. Some of our difficult children will qualify for disability......and should be able to apply for Medicaide if they are awarded soc sec disability. BUT there are also going to be many of our kids who are denied soc sec disability, who have great difficulty getting or holding a job, and many who will land in jobs that do not offer medical insurance. Even if they have documentation of an uninsureable illness, they might have grave difficulty affording it, unless that program CHIPS is revamped. It is a huge problem. Medical coverage is a hot topic and huge problem. Definetly for our difficult children, but also even for PCs........and for all kinds of people.
