How Being Disabled in a Pandemic Forced Me to Sue Los Angeles County
I get the feeling that a lot of nondisabled people think accessibility means throwing a ramp on something. Not only does that just scratch the smallest surface of what accessibility is, it’s also like… okay, why aren’t there more ramps everywhere then, if that’s the one thing you know? Let me snoop in your home, goddamn it. I want to look through my friends’ bookshelves, their closets, their chestnut armoires displaying an exquisite collection of katanas. (I think very highly of my friends.) I’m tired of missing out. I want the natural high of being in someone’s kitchen and finding the silverware drawer on the first try. But maybe most of all, I want to be able to leave my home. I’m sure now, a year into quarantining, you can relate.
Leaving your home (if you’re cautious) can be a hassle nowadays: bringing hand sanitizer, throwing on a clean mask (or two), making sure you’re dehydrated enough that you won’t have to use a public bathroom. Now imagine that your ability to leave your home is an actual bureaucratic nightmare. Enter IHSS. IHSS stands for In-Home Supportive Services. It’s a government program for seniors and disabled individuals in California that “will help pay for services provided to you so that you can remain safely in your own home.” Basically, it’s an alternative to living in a nursing home. I have a pretty severe disability, Spinal Muscular Atrophy type 2, which requires a lot of daily assistance, so I hire, train, and manage Personal Care Assistants (PCAs), and they get paid through IHSS. My PCAs help me go to the bathroom, get dressed, cook, do laundry, all the basic tasks required to be a functional human. That’s right, I’m just like everybody else, someone gets paid minimum wage to put my pants on one leg at a time.
While I’m grateful to have PCAs and a program that pays for them, IHSS is truly the bane of my existence. They’re enemy number one. The IHSS office consistently loses important paperwork, and their so-called “helpline” often has hours-long wait times and constantly gives out incorrect information. It’s a real shit show. I waste hours upon hours every month navigating a broken system that was supposedly built to serve me, but like most disability services out there, it was clearly created by nondisabled people who don’t view disabled people as equals.
For example, after I hire a PCA, it usually takes 3–4 months for IHSS to actually pay them. For 3–4 months, PCAs are expected to work while their pay is withheld… and this is in Los Angeles, one of the most expensive cities in the country. When interviewing potential PCAs, I would warn them of this 3–4 month delay and assure them that their first check would be fat from backpay, but many applicants (reasonably) couldn’t afford to wait 3–4 months to get paid. That meant I couldn’t hire enough PCAs to live on my own. Instead, my parents had to take turns living with me as a supplementary (read: unpaid) PCA, which I knew wasn’t how they intended to spend their retirement. “Seeing if California works” wasn’t going to last much longer.
I didn’t want to give up on LA/my career/my hopes/my dreams yet, so I did some digging on the disabled dark web (AKA Facebook groups) and discovered an IHSS program called Advanced Pay. With Advanced Pay, the state would send me a lump-sum payment at the beginning of each month, and I would use it to pay my PCAs. It seemed like the perfect solution: nearly cutting out the incompetent middle man (the government), so I could hire employees without begging them to work without pay for 3–4 months. However, when I brought Advanced Pay up to IHSS employees, they balked. Most of them didn’t know what I was talking about. One case worker, upon meeting me for the first time, said I “wasn’t capable of managing the payments.” Very cool, so glad their job is helping disabled people.
It seemed like Advanced Pay was a lost cause, but every few months when my case worker changed for no clear reason, I brought it up again. Finally, after two years of asking, one case worker was willing to look into it. Bless your heart, Ms. Gomez. It took a while — she kept being told by her superiors that it was too much work and to just tell me it wasn’t an option — but Ms. Gomez fought for me to be enrolled in Advanced Pay. Now my PCAs wouldn’t have to rely so heavily on a broken system to receive their wages. I could finally hire the support I needed to live in LA, the city of sta(i)rs.
Tired of the red tape talk? Me too, but in order to stay in my home, I have to navigate all of this boolshit constantly. Fast-forward eight months later to March 2020: the moment we all realized that the pandemmy was an actual threat/when America’s sweetheart Chet — I mean — Tom Hanks tested positive for one coronavirus. I had eight PCAs working for me at the time. So including my roommate and my boyfriend, I had ten people and all their germs frequently coming in and out of my home. Because of my disability, my lungs operate at 27%, and now there’s a highly contagious disease going around attacking people’s lungs? Truly a worst case scenario for ol’ Jac.
At this time, the nebulous CDC’s recommendations were to wash your hands, self isolate, and watch Tiger King. Self-isolating from my ever-rotating schedule of PCAs obviously wasn’t an option, so my parents wanted me to isolate with them back home in Milwaukee. I was hesitant at first, but then pretty immediately I lost half of my PCAs. They feared infecting me via their roommates or the other jobs they held (because IHSS doesn’t pay a living wage). The support system that I’d worked for years to create had dissipated, so I decided to watch Tiger King with my parents back home.
I feel like some people just hit a “home” button when they want to go back to their childhood home. It’s not that simple for me. If you’re wondering why flying isn’t an easy answer, pandemmy aside, well, that’s a whole separate rant with its own set of horrifying risks. For a power wheelchair user, I’d say the difficulty level is somewhere between flying on a plane with a horse and teaching a horse to fly a plane. Anyway, I didn’t think it would be safe to fly, and I also couldn’t drive myself home because my disabled ass can’t afford a car with the hand controls I’d need to drive it. So, we decided that my dad and brother would rent a car in Milwaukee, drive across the country without really stopping because we still didn’t know anything about the ‘rona, ditch the rental, and drive me in my wheelchair-accessible van back across the country to Milwaukee (again, without stops). If you can believe it, this is somehow the smooth-sailing part of this story. The hard part was trying to notify IHSS of my departure, so they wouldn’t send me money to pay employees who weren’t working.
You see, the problem with having to notify IHSS any time you leave the state is that case workers have no direct phone lines or emails. You can only contact them through snail mail or a single phone line and then cross your fingers that the random person who answers might consider helping you, or that you reach any person at all. If I had a nickel for every time I hit a dead end calling IHSS, I would… exceed disability income limits and lose my disability services. (That’s yet another story.) So I left messages and sent a letter asking how long I could be out of state/pause my IHSS services and how I could stop Advanced Payment while I was gone, but my new case worker took his sweet time getting back to me. I looked online for answers and in classic IHSS fashion, found nothing. I didn’t get a call back until I was home in Milwaukee, with April’s Advanced Pay money already in my account.
The case worker told me I could pause my IHSS services for up to 60 days. On day 61, my case that took two and a half years to set up would be closed and I’d have to reapply for services.
Okay, fine. Now I just needed to know how to return April’s Advanced Pay. I wrote down exactly who to make the check out to and mailed it immediately, and then it turned out my case worker had given me incorrect information. Awesome, thank you so much. A week later, with the right information, I did it all over again. My problem was finally solved. Right?
Come June, I was back in LA with half of my staff working for me. I received a letter from the state of California saying I owed $337.82 from an “overpayment in April.” That didn’t make any sense. I know that I didn’t accidentally keep any of the Advanced Payment money in April because I sent them every cent in my Advanced Pay-designated account. (I had to open a special bank account strictly for Advanced Pay so Social Security wouldn’t count this money against me because in case you didn’t know, disabled people aren’t allowed to have more than $2,000 in assets at any time, or else they’re not eligible for Social Security Income — in my case, IHSS.) Since they weren’t giving me any answers, I did the math myself and figured out that the $337.82 they were asking for was the amount the state had already taken out for taxes. Then I spent my free time on the weekend doing what I love most — writing an appeal to the state of California explaining their error, including my bank statements to show they were asking for more money than they gave me in the first place. This sadly wasn’t the first time I had to catch a government official’s mistake before it (literally) cost me, but at least it would be settled.
Think again! In July, I received a call from LA County telling me that my appeal was denied. Now, I could either make the payment or go to court over the phone. You read that right, folks, I had to go to phone court because these yahoo bureaucrats couldn’t figure out their own taxes being taken out. My pandemmy trip home was just like anyone else’s: it started with a few weeks at home in April and ended in September with a lawsuit against the state. I won’t lie though, it was fun to say shit like, “If you turn to page four, your honor” while in my pajamas in bed. Kinky, even.
Thankfully, the judge ruled in my favor, and I got to keep my own money. This whole ordeal was ultimately just a big waste of my time. An inconvenience. I even struggled writing this recap because it didn’t feel worthy of anyone’s time to read, especially because I know from personal experience that disabled people deal with much bigger problems than the one I paraphrased here. (Seriously though, I cut out a lot of intricacies and additional hoops I had to jump through.) But I wanted to share this story to dissect how the smallest feat of going home led to countless hours of me fighting to keep my care services.
Being disabled in this country means continuously dodging mundane murder attempts via bureaucracy. I am the hot girl stuck in the most boring horror movie, and I’m tired of it. I’m tired of my free time going towards correcting state employees’ mistakes instead of spending time with friends and writing court appeals instead of scripts. I’m tired of my time being wasted by nondisabled policymakers who think they should be able to control how long I go home for and how many minutes I get to shower per month and how much money I can have in my savings and the list goes on and on.
One in four adults in the US have a disability, and you can bet your meager stimulus check that number will go up because of COVID. Disabled folks can’t be the only ones advocating for disability rights — our time is already sucked up advocating for ourselves to just live. So now that you’ve all experienced a year of what it’s like to be stuck inside your homes, please consider what it’s like for those of us who have been dealing with this our whole lives. Think about what you can personally do to make our society more accessible. And then do it. Or else I’m taking your ass to phone court.
