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Yeah, what I mean by long term care is like home attendants that can help you with things like getting dressed and eating and taking a shower and getting in and out of bed, all of that stuff. So Medicaid is really the only major funder of that service. Private insurance generally does not cover home care, so if you need it, you really have no choice but to restrict your income so that you qualify for Medicaid and then you can get on to one of those programs. The alternative would be to pay for attendance services privately, which would cost many thousands of dollars a year and would probably wipe out your entire salary. The other choice is to just have unpaid family members do all of your care and then it’s like, well, you don’t have any independence there either.

But even when you are in the long term care program, it’s not like they give you as many hours as you actually need. Like, if we’re being honest, because of the unpredictability of not exactly knowing when you might need help with something, technically, I need 24 hours care basically because I need somebody to be available to me pretty much all the time. But the state is notoriously stingy, and right now, even though I’m basically dependent in every domain of life, they only give me 5 hours a day at this time. And New York is one of the more generous states in the country. The flip side is that if I called them up and told them that tomorrow I would like to go to a nursing home, they would pay for that, which is 24 hours care, without question.

But if you ask for 24 hours coverage in the home, you’re more than likely not getting it. So even with the long term care programs, there’s some expectation that you have to supplement in some way, whether it’s a parent or a sibling or a partner or whoever, somebody has to fill the gap. Otherwise you can’t survive.

And especially if you’re disabled and have a partner who’s also disabled, it’s not like they can help you physically either. So it’s very difficult. And it results in a lot of physically disabled people just living with their parents indefinitely because they need their parents to fill the gaps in care. And qualifying for Medicaid, which is often by way of SSI, it doesn’t really leave you much extra money to do anything.

You’re financially shackled, so to speak. And a lot of people will be like, well, why don’t you just get a really good job, and then you can pay for your aid.

It would have to be an extremely well-paid job to have anything left over after you paid for all of your help. Not to mention that it’s difficult to find people to fill the attendant hours. So, it’s not just getting approved for them and qualifying for them, it’s finding people who can fill them that will stick around because it’s not a particularly well-paid position as important as it is. So, there’s a lot of dead ends, so to speak, with trying to make yourself more independent because the home care that you need in order to be as independent as possible strips you of a lot of your financial agency.