''You Think I'd Lay Down and Die?" - I Will Survive... As Long As I Can

 It blows my mind when people do not care about accessibility issues. Don’t you know you will be disabled someday if you don’t die first? The reality of being disabled in America is so much worse than you could imagine — especially recently. I had to break it to someone struggling with their health today. They were really upset by what I had to say. Meanwhile, someone else I know said they don’t notice disability issues because it’s not interesting to them.

Friend, taxes aren’t interesting — you still have to file them. Sometimes, you just have to care about something because it’s the right thing to do.

In case you didn’t know, there are two types of Social Security disability benefits — SSI and SSDI. When I first started applying for Social Security in 2014, I was eligible for SSDI. However, due to stigma, I dropped my case and started a nonprofit where I made pennies to the hour and didn’t pay enough into Social Security. For this reason, when I applied again in 2020, I was only eligible for SSI.

Here’s the caveat: SSI is only awarded if you and your spouse have total assets of less than $3,000. My spouse was working a high-paying job at the time, so I wasn’t eligible despite my disabilities. In 2023, my husband wasn’t making as much, and I tried again. I wasn’t approved until May of 2025.

A lot of attorneys would not work with me because my back pay would be minimal — despite how many hours I worked before becoming disabled in 2014, and despite how many hours I worked my self-employed job until 2020. It didn’t matter to them. For this reason, my back pay was a whopping $10,000 after lawyer fees — and all of it went to pay off debt I’m still paying off. All this work, for less than $500 a month.

Here’s another kicker. My husband is applying for SSDI. If/when he gets approved, my SSI payments will pause — unless he leaves me, dies, or the laws change. So all of that work? It just secures that I can stay on Medicaid anywhere I move in the country. If my husband gets SSDI, we will have slightly more money coming in each month and we wouldn’t have to worry so much about income level — some, but not as much.

My husband’s appeal for an SSDI hearing was due a month ago, and we just applied a few days ago. We didn’t apply on time because he has autism and requires help with administrative forms, and I was too sick to help as I was bedbound for months. He was also undergoing TMS treatment for depression and anxiety, which messed with his cognitive function and memory. We are hoping the Social Security Administration accepts this excuse, but you really never know.

Let’s talk food stamps. Since I started getting SSI recently, we lost $400 in food benefits. That’s almost the entirety of my SSI check. Again — what was the point? So, to get that benefit back, I had to submit supplemental medical bills Medicaid doesn’t pay for, update my utilities because my shelter allowance should be higher now, and start putting money in an ABLE account (an account for disabled Americans that cannot be counted against social benefits).

Unfortunately, my application was denied because they claim my husband’s bank statement was a month prior to what they asked for. I’m pretty meticulous with this stuff, so I highly doubt this is true. I sent the updated document, and they reopened our case — but at best, we will be getting benefits later than our usual date.

On to Medicaid and Medicaid waivers. Medicaid is different in every state. In Indiana, there are two types: Traditional Medicaid and the Healthy Indiana Plan (HIP). I fought like hell to get Traditional Medicaid, and now I’m fighting for my husband to move from HIP for Medically Fragile to Traditional Medicaid.

When you qualify for Traditional Medicaid, you can apply for Medicaid waivers. These are also different in every state. I have/had the Health and Wellness waiver, which awarded me pay for my husband to care for me full-time, meal delivery, alert button services, automobile conversion, and a housing allowance for necessary remodeling for disability reasons.

My husband is on the waitlist for the Family Supports Waiver, which would allow him to have a life coach/therapist.

Here is where it gets messy: Indiana Medicaid is collapsing. They screwed up the budget a few years ago, so they outsourced a new company to make decisions about level of care for patients through a phone interview. This phone interview is severely backed up. Despite calling them at least weekly for over a month and getting written verification that if they didn’t get to me on time I’d be covered, my case manager informed me yesterday that my benefits were not extended.

Without these benefits, my husband will not be paid and we will not receive prepared food — despite the fact that I have been in the most severe category for two years now.

This situation is not unusual. Families across Indiana are losing caregiver income and other benefits. Some are losing Medicaid entirely. Some are extremely ill, but the waitlist to get on a Medicaid waiver has surpassed 10,000 people. My husband is one of these people.

This situation is so horrendous, my brain can’t process it. I moved here from my home in Florida for these benefits. If they are gone, why am I here? Hopefully, it gets straightened out. I’m going to fight like hell — like I always do — to make sure of it.

Did you know that if you are disabled, you can get to the front of the line for Section 8? You have to apply for the HUD Non-Elderly Disabled (NED) voucher. It is available in EVERY state, but state and federal employees aren’t allowed to tell people about it at many agencies. Luckily, I have a really good disability advocate who told me. I was approved for Section 8 within a couple of months — no waitlist. This is a huge deal because it means I don’t have to pay rent. But there are downfalls.

As most people know, Section 8 properties are not the most desirable. What most people don’t know is that Indiana is in the top 10 of the worst states with Fair Housing Act protections — only offering the bare minimum. My last apartment complex had two handicap parking spaces in the entire complex, and apparently that was okay because the property was built before 1991.

News flash: 1991 was 34 years ago. This shouldn’t still be an excuse.

You can fight these landlords for discrimination, but if you don’t have evidence for every single promise and conversation or every accommodation request — even though you were told you wouldn’t need it for certain things — you’re screwed. The landlords will lie to save their company money, meanwhile you are floundering for survival.

My elevator was broken, and I was trapped on the second floor for over a month. My apartment complex offered accommodations, but they weren’t accommodations that would meet my needs. A civil rights agency is saying any accommodation is sufficient — which is insanity, and against the law.

Technically, any accommodation is not enough. If I were totally blind and needed a book in braille, but you handed me a book in large print — that is an accommodation, but it is not one that suits my needs. That’s the kind of accommodations my apartment offered me.

Further, no attorneys take tenant cases in this state — trust me, I have tried desperately. I’m exploring all of my other options, but the stress is overwhelming.

This is just the tip of the iceberg for those of us fighting to have our basic needs met. It gets much worse when you consider accessibility in public buildings, public transit, travel, etc. That’s another conversation for another time.

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I am running out of the ability to keep fighting. It is severely affecting my physical and mental health. However, how do I stop fighting when it means I will lose the needs that are so vital?

I’m considering pursuing policy changes — which will just be one more thing — but this stuff can’t keep happening to me, or to anyone. I’m going to do what I can with the life I have, even if it means not having much of a life at all.

At the end of the day, when I don’t have to deal with jumping through hoops or blatant discrimination, I am still severely ill — and have to take care of myself. The joys of life have to fall to the background.