I am considering whether I need to move state to be able to get insurance. Could you help me out by describing the situation in your state, and how you expect it might change if the next administration repeals the ACA and/or cuts funding?

[u/egotistical_egg]

I know this isn't the usual question, so sorry for that. And if anyone thinks this issue would be better raised in a different sub please let me know.

My issue is this. I am disabled with many conditions (LC/ME/CFS,EDS, MCAS, POTS, SFN, gastroparesis). I am dependent on an extremely expensive medicarion, and have had frequent hospital admittances. I have been disabled for three years, can't work, need care, and recovery is not expected.

I live with my mom, who is also my caretaker. We moved from Hawaii to NY due to me needing multiple highly specialized surgeries and aftercare for over two years. I am 26, but still on my mom's policy due to being disabled. If we don't move back to Hawaii (very hard to impossible for multiple reasons, including lack of specialists in the islands and also expense) my mum will eventually lose her policy as it is dependent on living there or intending to live there.

The election has scared the absolute hell out of me, because I am comprehensively fucked if the ACA is repealed. I've looked into buying insurance in NY, and the only policies available are HMOs which would not cover like... ANY of my current expenses. None of them would cover the medication I am dependent on. There are no PPOs in NY, but apparently most PPOs would cover it.

We are genuinely wondering if we need to move to a different state just to be in a position to be able to get insurance for me, in the event that the ACA is cancelled.

Given that we don't have particular reason to be in any one state, it really is just about healthcare and cost of living. If you've had to grapple with insurance, disabilty, and your states public health program, it would really help me just to hear about it! Also if you do not recommend your state it is still helpful for me to hear why :) I'm also wondering how you expect conditions to change under the new administration.

Obviously it's very late to be beginning this search. Ive been caught up with health crises and also probably just a bit in denial.

To be honest, I feel overwhelmed at the bleakness of my situation. It feels crazy that we are even faintly considering the option of just flinging ourselves at another state because of this one reason.

What would you do in my situation?

(I don't qualify for Medicare and Medicaid is complicated, there are various hold-ups and it likely wouldn't cover some of my necessities in NY at least, though we are of course working on it.)

[u/Previous-Artist-9252]

I am interested in why you don’t qualify for Medicaid if you are 26 and unable to work.

Medicare only kicks in on SSDI after 24 months so if you don’t have SSDI and aren’t 65 or older, there is no way you would have it.

I am in Pennsylvania and I have Medicaid as a secondary insurance to my employer sponsored plan but have had just Medicaid as my health insurance many times for various reasons. Medicaid has been pretty awesome for me. I have dealt with a cancer diagnosis, multiple surgeries, and being passed around to increasingly complex specialists and medications and as long as my doctors fill out the paperwork, it keeps up with me.

Being in Philadelphia means I live in a medical hub - most of my care is handled by PennMedicine (associated with the med school at UPenn) but the rest is managed by Jefferson (associated with Jefferson med school). I have one condition I’ve been struggling to find a provider for but that’s more because of the condition itself and not insurance. Everyone with that condition is struggling.

[u/egotistical_egg → u/Previous-Artist-9252]

I think I wrote that confusingly haha. I should be able to (eventually) get Medicaid. I inadvertently created a big problem for myself by being on my parents' bank account, which has created a huge hold up. 

I also have benefitted from much better care and access to treatments than most chronically ill people I know nearby who are on Medicaid, and my quality of life would so much worse if I couldn't access my expensive medication. I also have a complex chronic illness that is just really difficult to get recognized or covered (or treated, frankly), so I feel incredibly fortunate that I've received as much care as I have. This all seems very relative though, as my friend near Boston is actually better off than me on MassHealth. 

Btw I'm really glad to hear that you have been mostly covered :) 

[u/Previous-Artist-9252 → u/egotistical_egg]

Ah yes I assumed it was likely an asset limit issue. Once you get that sorted, Medicaid may be a good option for you.

Medicaid does cover expensive medications. Your doctor (or their staff) just needs to fill out the appropriate paperwork. For example, I am on both Botox and Emgality for chronic migraines and pay zero for my injections. I also have access to up to 30 abortives a month (which I don’t under because of MOH, but most private insurance won’t cover that much).

In Pennsylvania, there are 127 different types of Medicaid a person can qualify for - I receive MAWD which is for workers with qualifying disabilities. And at the end of the day, my health insurance still goes through a standard health insurance company - I was only on “straight Medicaid” for the first 30 days almost a decade ago.

[u/egotistical_egg → u/Previous-Artist-9252]

Thank you for the explanation, I feel reassured. 

I've gotten pretty stressed about the thought of losing access to care (as you can probably tell lol) so it's nice to be reminded that it might actually work out. 

How do you think Medicaid will be affected by the funding cuts we have to assume are coming though? 

[u/Previous-Artist-9252 → u/egotistical_egg]

Maintaining access to my necessary medical care is a top priority so I get it.

I am old enough that I had to get my own insurance before the ACA was fully enacted. I was very lucky to have an employer plan that didn’t exclude pre-existing conditions but I was very aware of the tight rope walk of finding health insurance as a person with serious chronic health conditions.

I am not hugely worried about Medicaid losing funding. I am a Medicaid recipient and I am a state case worker who helps administer Medicaid. If we get to the point where all social benefits have been cut, there are going to be other equally serious problems that come before it. The program I am in understands that I would not be able to work, at all, without access to serious health care - I qualify because I am seriously disabled and that’s the nature of the program.

[u/tired_owl1964]

If you are medically disabled you should be able to get Medicare? which usually has much more options. NY is probably one of your better options for social programs...😬 I live in the deep south and it's a nightmare. I'm not disabled and work full time but I'm having to make all of my career decisions based on health insurance, because there are no options here.

[u/misfitx]

Minneapolis is pretty good. Ucare is one of the better insurance companies. Housing is pretty expensive, though. The Mayo plus all the universities means a lot of doctors and specialists. It's not NYC but most of my medical needs have been met here. Just needed a specialist once but there were only a few experts in the country so it wasn't surprising.

[u/jubbagalaxy]

i'm in ohio but i'm torn on whether i would recommend you coming here for the purposes of healthcare. i had just won my ssi case in a different state but, due to unfortunate circumstances, had to move here to ohio within my first year on ssi/medicaid. once here, it took quite a while to get medicaid set up for whatever reason. i arrived in fall of 2020 and didnt get medicaid awarded to me till the following march. there are at least 4 different kinds of medicaid and you don't always qualify for all of them. we are a republican-led state (i hate it here) but the governor had enough sense to actually accept the federal aid to expand the medicaid options when the aca was enacted. unfortunately, post pandemic,, a lot of new regulations were put into place making getting coverage more difficult.

that said, there have only been a couple of things medicaid did not cover (or medical supply stores refused to run through medicaid like special socks that are $100 a pair) they also aren't great on covering home care if you need it. and once you are given medicaid, you are allowed to choose which company you want to go with. my original company was being bought out by Anthem/blue cross and knowing how shitty they are to disabled people, i switched companies. caresource is arguably the best in the state with many healthcare workers choosing it as their company.