Just a heads up:

If you are on Medicaid in the US you probably have not had to renew your coverage since March of 2020.

You WILL have to renew this year. The first renewal packets are getting sent out this month (March 2023). If you do not respond to them your Medicaid coverage will be terminated.

If your coverage is terminated, you have 90 days to appeal before you need to start the whole application process over again.

Please watch for this packet and fill it out if you get it! Don’t lose your coverage!

I feel like people often don’t talk about the experiences of disabled people who have caretakers because so much of the conversation is about us—not including us.

I receive in home care for 30 hours a week (+ 4 hours/week for respite). This is paid for by Medicaid (state insurance). Outside of paid hours, my primary caretakers care for me unpaid and assist me most of the time. I’m very rarely left alone due to my high support needs. Often, when I am left alone, I am completely bedridden or at minimum housebound. I have frequent emergency life threatening health problems, falls, and serious injuries even with support in place, and these things significantly increase when I’m on my own.

I’m extremely lucky that my paid caretakers are my partner, my sister (the only family member I have regular contact with, I’m estranged from the rest of my immediate family and most of my extended family) and my best friend.

I used to have agency staffing which was horrible for me and borderline traumatic. At several points, before doing the self directed care option (which allows me to choose my own staff, hire and train them myself and dictate hours for them), I opted to not have any staffing. I was regularly in the emergency room. I can’t drive, so I was having to walk and if I was lucky enough to be able to take the bus on occasion or get a ride from a Facebook acquaintance, they were few and far in between. I don’t have family support, and even my sister who is supportive wasn’t living in the state at the time and doesn’t have a car most of the time.

And before I could even choose which staffing option, even though medically it had been deemed essential for me to have in home care, even though my insurance covered it, I had to wait several years (I was 18 when I was approved) until I was 21 to qualify to start. The reason why: I was legally an “adult disabled child” because of my high support needs (which is funny because I STILL don’t have SSI at age 24) and thus legally unable to consent to my own care plan. I needed a blood relative to consent, and that same blood relative (who had to have proof of such!) couldn’t care for me. At the time, my sister was the only person who could’ve been my caregiver and also she is the only verifiable blood relative I have contact with for safety reasons, and my only relative on this side of the USA.

The first business day after my 21st birthday I immediately got things set up to get in home care.

This is out of date, I get assistance with more than just these highlighted ADL (activities of daily living) tasks now.

In short: my day-to-day life is entirely dependent on others.

And there’s power imbalances that exist between me and my caregivers, even with my current caregivers being amazing and anti-ableist. They will always exist. We talk about the power dynamics of me being dependent on them for my survival, and how heavy that weight can be for each of us.

Having caregivers often means that accessibility is extra difficult— I’ve been told straight up multiple times that I can’t have assistance from my caregivers to help me change in a changing room when we’re out shopping. That they can’t go into the bathroom with me, that they can’t help me get un/dressed during appointments, that they can’t come into spaces with me.

I’ve been denied access to psychiatric care because I can’t do my daily living tasks (ADLs- the highlighted items) independently. And when I’m in a hospital or emergency room, I can’t have my in home workers be paid to care for me, there’s an expectation that the nursing staff at the hospital will do it. Even though my caregivers were specifically trained to learn my body and needs for weeks and have been working with me for years. I have severe cPTSD and showering in front of a stranger is something I cannot do. I would rather fall or faint or get injured or just not shower than deal with that. But I’m expected to just let anyone have access to my body just because I’m physically disabled and need support.

When I faint/fall/get injured/have life threatening health issues arise while I’m not clothed, or when I’m otherwise vulnerable, I’m supposed to let strangers just touch me however they want to. I have to show them my chest (for my cardiac care) and let them poke and examine me. I can’t object without losing access to vital care.

I have agency. I have rights. I have autonomy. I deserve to be able to exercise these things.

Joe Biden Is Shrinking the Welfare State

“By the estimates of the Department of Health and Human Services (HHS), 15 million people are going to lose their health insurance over the next few months, including 5.3 million kids. Worse, based on historical trends, 6.8 million of those people will lose their Medicaid coverage in spite of still being eligible for it simply because of bureaucratic trifles ...

“The effects of the declaration’s end will go well beyond this, affecting working people’s ability to get free tests, vaccines, and affordable treatment for the virus. It also means the end of extra food stamps, another generous program set to continue as long as the emergency exists and a vital lifeline for working people struggling to keep up with grocery bills in the face of inflation ...

“From a practical and moral standpoint, this is obviously a travesty. But it’s also a needless own goal for the president, putting an already deeply unpopular Biden in the position of running for reelection in a year’s time with millions of people losing their health insurance — and his potential Republican opponent being able to boast he’d been the one to extend it to them in the first place. More than that, it makes a mockery of his frequent public statements insisting that his administration will ‘continue to fight for racial justice,’ since, as the HHS, acknowledges, 15 percent of those who are about to lose their coverage as a result of his decision are black and one-third are Latino ...

“If the idea is that Americans are now tired of thinking and caring about the pandemic, making supporting any COVID-related policies politically toxic, then this is the wrong way to go about unwinding those. Americans didn’t hate that the pandemic response included protecting them from being kicked out of their homes by greedy landlords, getting financial support for the government while they were unemployed, or having health insurance and a variety of other health care needs guaranteed.”

Let’s think about what this conservative lady is saying for a second.

F—k Tex-ass Republicans!

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THIS ISN'T COMMON KNOWLEDGE BUT SHOULD BE...ABOUT MEDICAID....

If you ever find yourself in the position of living in the home of a parent who is disabled and requires full-time care and you are their primary caregiver for at least 2 years, and they intend to leave their assets to you after they pass, make sure to transfer ownership of their assets, home/land in your name ASAP...or they will require you to pay back any benefits received and claim those assets even out from under you, as soon as your loved one passes. This is yet another way that generational assets /wealth are easily taken out of marginalized communities. It is a loan.

And the sharks circle as soon as your loved one passes. Here's an article about it:

Decided to add context. I don't like to talk about it here, because ehh, social media is for my vapid entertainment thoughts for me. It's a hobby/getaway/ place to get semi-social with strangers and online friends with shared interests, but I don't want anyone else to go through what I am... Of course, this applies specifically to the U.S.'s broken healthcare system. So, for those who don't know, my mom passed recently. I am an only child with no siblings or children. My whole life during that time was 24/7 care. She had insurance, but it wasn't enough to cover everything that she needed, so Medicaid was the obvious solution, right? The government takes care of our disabled elderly who have worked until retirement, right? It seemed like the routine thing to do, I had never heard anything during the process about having to pay it back,but sure enough, less than 12 weeks after her passing, I was hit with a warning (which I followed up on and was told I would NOT be charged because of my caregiver status) and then 2 weeks later the "bill". The lady I spoke to, totally changed her attitude from the first time I spoke to her to the point where I felt scammed. Out came a patronizing voice certain people use with children, that measured whiny thing (it's always a red-flag to me and makes me instantly dislike you if you do this even with kids, btw... speak to kids like PEOPLE). I feel like an idiot. I have been doing this for over a decade and didn't think to transfer any assets of hers during that time because it *was* hers. I wanted her to feel as empowered about that as possible.

Not a single soul said I should transfer those assets to keep this from happening and now I'm facing down what feels like some kind of weird conspiracy to take the land and house.

FYI, there have been weird inquiries, the census came to mark down my mother's death literally *immediately* after she passed...and odd timing called the day of the notice to "help", with all the southern Christian signifiers (bless your heart we'll be praying for you).... It feels so seedy. Anyway, all this to say if you find yourself in a similar position....

TRANSFER THOSE ASSETS INTO YOUR NAME 2 years into caregiving or they will take them from you, house etc..

For U.S. residents who are on Medicare, Medicaid, or are uninsured, and who have been prescribed the antiviral Paxlovid (used to reduce the severity of COVID19), the medication is free through Pfizer's patient assistance program. People who have private insurance might also be able to use the link reduce their co-pay.

(Or if you prefer the phone to a website, you can call 877-219-7225 to sign up.)

The list price for Paxlovid is $1400 for the five-day course, and now that the federal government is no longer providing the medication for free, some people are being told by pharmacies that they have to pay list price (because they are uninsured, or because the medicine is not covered on their insurance). If that's you -- or if your co-pay is steeper than you can afford -- please check out the patient assistance program above!

(Hat tip to Dr. Leana S. Wen at the Washington Post, who talked about the program in her latest column.)

Literally the witch in Hansel and Gretel cared more about kids.

At least she was feeding them.

He wants to end abortion, overturn the 2020 election, criminalize gay sex, repeal Obamacare, slash Medicare and Medicaid, and much, much more.

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If you have ever wondered why health insurance in the US is so messed up, I highly recommend checking out Dr. Glaucomflecken’s 30 days of Healthcare series. Click here for the YouTube playlist or click here for the TikTok playlist.

Each video is about 1-3 minutes and goes through different aspects of the healthcare industry explaining how it works and especially how corrupt it is.

I spent 5 years working hospital finance watching the way health insurance directly affected my patients, and oftentimes seeing the ways lack of access to affordable healthcare resulted in chronic and emergent conditions, and even death. I cannot stress enough that I literally saw people die because their insurance denied them treatment. And on the billing side, the things people would complain about to me as something the doctors or hospital were doing wrong were usually a direct result of the way health insurance runs everything. It’s disgusting.

At the end of the series, he has a call to action - ways we (as regular people) can help work to improve healthcare (other than pushing for universal healthcare/Medicare for all). A lot of people talk about how ridiculous US Healthcare is but rarely do I see anyone talking about what we can do to change it. I think this is the most important video of all, so I’m including it here.

This video series is probably the most comprehensive, easiest to understand breakdown of the way healthcare fucks everyone over - patients, doctors, and hospitals alike. Please check it out!