Disability Benefits (And Other Things That Keep me up at Night)

My nightmare began with a phone call. 

The IHSS caseworker was calling to do an intake interview after I moved from Tuolumne County to Solano County earlier this year. I wrote about the experience back in July, but I left out some of the details because the situation was still in progress, and I feared that the caseworker would read my blog and make my life even more difficult than she had already. 

She was skeptical from the moment her voice blared through the phone. I was having difficulty speaking, so my mom was helping me with the call. (The following dialogue is approximate not verbatim.) 

“Jamison is here,” Mom said, “but he’s not feeling well and struggling to talk.”

“Hello? Jamison?” the caseworker responded, ignoring my mom.

“He’s here but not feeling well,” my mom repeated. 

“Jamison? I need to speak with Jamison,” the caseworker said. 

I whispered into the phone, “I’m here.”

“Oh, okay,” the caseworker said, seeming surprised that I existed, as if she thought my mom had fabricated my existence in a scheme to defraud the government. She continued. “I need to ask you some questions.”

I answered a few of her questions, whispering into the phone with varying levels of volume. Then she asked, “Can you feed yourself?”

“Yes,” I said. 

“Can you make yourself a meal?”

“No, but I can grab a granola bar from the bin beside my bed,” I said. 

“What about laundry? Can you fold your laundry?”

“No,” I said. 

“So, you can grab a granola bar but you can’t fold your laundry?” she asked, her voice reeking of skepticism. 

“That’s right,” I said, a sudden rush of anger and adrenaline surging through me. I didn’t elaborate because there was nothing else to say. If the caseworker didn’t understand that folding laundry is infinitely harder than eating a granola bar, then nothing I said was going to change that.

The caseworker shuffled some papers around on her end of the phone before continuing. “Do you need help with your bowel movements?” she asked. 

“No,” I said, my voice flat. I couldn’t believe that I was dealing with this bullshit. After a decade of battling my illness, after countless trips to the ER and doctors’ offices, after nearly dying, I had to share the most intimate details of my life with a complete stranger. And not a nice one. I had to demean myself in front of this unpleasant person just to get a fraction of the money and care that I needed. 

“Are you incontinent?” the caseworker asked. 

“I use a bedside urinal,” I told her, facepalming. I was almost out of energy, my voice struggling to keep up with her questions. “Are we almost done? As you can tell I have trouble speaking . . .”

“It seems like your voice comes and goes a lot,” she said, her tone more skeptical than ever. 

“Right, that should confirm to you that I have trouble speaking.”

“Okay,” she said, shuffling more papers.

I scoffed. “Where is your skepticism coming from?” I asked. “Why are you being so judgmental?”

“I’m just doing my job. Asking questions,” the caseworker replied.

“Your job is to be skeptical?” I asked. ”And your last comment wasn’t a question. It was a statement. A judgmental statement.”

“It was an observation,” she said. 

“It was a statement,” I repeated. 

My throat was on fire. I had spent almost an hour on the phone with the caseworker. I was so tired, my body was literally shaking, my torso rattling with tremors. 

“Let’s move on,” she said. 

“How much longer?” I asked again through gritted teeth. 

“We’ve finished two sets of questions. There are four more.”

“I need to stop,” I said. “Can I finish answering the questions in writing? Over email?”

She paused, then said, “I don’t think that’ll be possible.”

The caseworker agreed to continue the interview at a later date, but she insisted on making me speak despite my repeated requests to answer her questions in writing. She claimed that doing so would take too long, drawing the interview out. But her method of making me answer the questions vocally would take even longer. 

Finally, after I quoted the Americans with Disabilities Act several times, the caseworker compromised and let my mom answer the questions on my behalf. 

But my part was far from over. The caseworker still had to see me in person. 

“Will you take a COVID test?” I asked her. 

“You want me to take a COVID test before I get to your house?”

“I would appreciate it,” I said. 

“The nursing homes don’t even require me to do that,” she said.

The caseworker finally agreed to take a rapid test and wear a mask before entering our house. Then I asked my mom to have her stand outside my room and observe me instead of coming inside.

“He doesn’t want me to come inside his room?” she asked my mom. “Fine, then I’m going to leave.”

After pleading with the caseworker, my mom was able to convince her to go to the backyard and observe me through the French doors attached to my room. Then she had me fill out an obscene amount of paperwork before she left, agreeing to finish the intake interview after she got back from vacation. 

I couldn’t help but think of the unfairness of it all. Here was this caseworker putting me through hell, just so I could get the care I needed. And she got to take a vacation while I remained at home, stewing over her looming decision about my caregiving hours. 

When she returned from vacation, she came down with an illness, so we finished the interview over the phone. She requested to “observe” me on FaceTime. She asked me to walk, which I couldn’t do. Then she asked that I sit up, which I wasn’t feeling well enough to do either. 

“So you’re refusing to sit-up?” she asked. She didn’t understand. She was never going to understand. I was over it. I was done trying to convince her that I was sick. 

“I hope you have a good mattress,” she said as the interview was wrapping up. “You have to be careful of bed sores.”

One minute she was skeptical of my illness, the next she was worried that my illness would give me bed sores? This caseworker was not only one of the most frustrating people I had ever had to deal with, her logic made no sense.

The Hits Keep Coming

Less than a week later, I received a letter in the mail notifying me of my new monthly caregiving hours—64. That was less than 15 hours a week that my mom would be paid to care for me, a drastic reduction from the 240 hours a month I had been receiving. 

I immediately informed the caseworker that I would be appealing her decision. Then I posted about it on my blog. Many thoughtful people reached out to offer help (thank you, friends!), some offering connections, others offering guidance and shared experiences. 

One person who also had a disability said that she received more IHSS hours than me, even though she could walk and take care of herself much more than me. It illustrated how subjective and unfair the process was. 

I reached out to lawyers and disability organizations for help with my appeal, but my hearing date was rapidly approaching and no one returned my messages in time. The stress of it all was getting to me and my mom, so when a mediator for IHSS called and tried to resolve the dispute, we decided to settle. 

I now receive 96 caregiving hours a month, which is still less than half of the hours I had in Tuolumne County. 

Because my mom works full-time as my caregiver, reducing my IHSS hours means that her income is now cut by two-thirds. She has been trying to find other work to make up for the loss of income, but looking for a job at retirement age is an exceedingly difficult task, especially when she has to be extra careful about COVID exposure. 

If that weren’t bad enough, last week I got a letter from SSI notifying me that my monthly disability disbursement will be reduced by $100. The reason was that last year, after my book came out, I received a royalty check that put me over SSI’s $2,000 income limit. The most frustrating part is not that I’m prevented from earning that much (though that is frustrating), it’s that I didn’t even earn that much to begin with. 

I did receive a royalty check for my book, but when you include all of the marketing expenses I incurred, I didn’t earn a dime. I actually lost a considerable amount of money. But in the eyes of SSI, I earned more than I’m allowed, and now I have to pay back $2,000.

It’s ridiculous considering that even most working-class people need to make more than $2,000 a month to survive, especially in the Bay Area. But disabled people on SSI aren’t allowed to do so. We aren’t allowed to make that much in a whole year, or receive that much as a gift, or even live in a family member’s house rent free without being penalized. 

Things Aren’t All Bad 

Believe it or not, I am incredibly grateful for SSI and IHSS. These programs have helped me and my family stay afloat during the last decade that I’ve been sick. But that doesn’t mean that the programs are perfect or even work well. In fact, I would say that they are broken in many ways. 

They are designed to help people, sure, but they are also designed to give sick and disabled people the absolute minimum. I would even go so far as to say that these programs are designed, however unintentionally, to prevent us from finding financial upward mobility. There is a limit on how much we can earn, how much we can own, and how much we can spend.  

Many such programs are concerned with people defrauding the system, people receiving benefits when they are able bodied. But sick and disabled people aren’t able bodied. We aren’t defrauding the system. We are just trying to survive in a world that is already working against us. The last thing we need is a cruel, hyper-aggressive caseworker questioning whether we actually have trouble speaking, and we definitely don’t need SSI cutting our benefits by $100 a month because we got a check for a little money. 

What’s wrong with allowing us to earn as much as we can? The government doesn’t need to put a cap on our earnings. Our bodies already do that for us.

These programs are helpful, but they are also broken. They have the potential to do so much more. We just need to reform them. And we need to reform them now. 

I know this post has been kind of depressing, and things seem like they are going bad for me (it certainly feels that way sometimes), but things aren’t all bad. I have a lot to be grateful for. Money is scarce, but at least I’m back in the Bay Area, living in a safer, healthier place. I just made it through a relatively mild summer compared to the blazing hot summers in Tuolumne. There has been no smoke keeping me indoors, no looming fire danger. And, in my eyes, that is something to celebrate.

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