Ep 3: Trapped Where I'm At

Despite being on track to attend a terrific law school, Mandi found herself stuck in the Big Apple because of a flawed health care system. In this episode, Mandi continues the discussion about the American system and the catch 22s it forces people with disabilities to face.

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Transcript

Mandi: Mandi Frantz here welcoming you to my podcast - Find Your Beautiful: Life Through the Eyes of a Christian Disabled Woman.

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Opening: My career path was laid out for me by the time I was 7 years old. I was forming clear sentences at the age of 2 and always had a sassy attitude. Growing up, I was given the nickname Chatterbox. The career my mom planned for me was as a lawyer. I was excited about this job for a long time. In my mind, I believed I had all of the natural talent to be successful at it and it was prestigious. I believed it would pull me out of my living style and allow me to live a lavish life, taking my family with me. Yeah, I watched too much TV!

I became a Christian when I was 6 years old. I’m looking forward to sharing more about my faith in future episodes, but for now I mention this because it played a big part of why I wanted to relocate to another state after college. Faith and law in our country are often difficult to blend. I’ll never forget when I was already in college and decided to talk to the Pre-Law Adviser. He asked me what law schools I was considering. I told him Regent University. He hadn’t heard of it, but asked me why I decided on this school. When I told him it was the only Christian law school approved by the American Bar Association at the time, he actually laughed and told me I should reconsider. At this point, he had written me off as a disabled kook and I ended up leaving his office feeling quite unsure of myself. People who know me know that making me question myself often causes me to determine myself to do what I want. This was the case in this situation. I had my heart set on becoming a lawyer and keeping my faith at the center of my career. I started planning how I would leave the Big Apple to get to Virginia Beach for my Juris Doctorate. I didn’t realize how right that adviser would be about needing to reconsider, though not for the reasons he implied.

Today I’m going to share with you how a country founded on “life, liberty, and the pursuit of happiness” traps people like me!

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Mandi: Last week I briefly shared about the importance of Medicaid for people with disabilities. This insurance covers the cost of long-term home care, keeping people out of institutions. Medicaid covers the cost of equipment like wheelchairs and other devices that allow individuals to live more independently. It does all of this, while also paying for doctors appointments and medications. I have been blessed to have this insurance most, if not all of my life. I have used it for all of the things I just mentioned since I was 4 years old. I could not function without access to it and the resources it provides.

Unfortunately, there are some huge flaws in the Medicaid system. First, which I also touched on last week, is that it has financial caps that often force people, especially people with disabilities, to remain in poverty. As soon as you make even a cent over the limit, you are in jeopardy of losing Medicaid and all the benefits that it comes with. There are some relatively newer options that allow you to keep Medicaid beyond their caps. In fact, I’m enrolled in the Medicaid Buy-In Program, which increases the cap, but means you need to pay a spend down. Luckily in New York, there is a moratorium on paying premiums, but this could change at any time. I’ve heard the cost can be as high as $400-$600 per month, again, forcing people to stay in poverty.

Another major flaw, and the one that kept me trapped in New York, despite my determination to go to Regent, is that every state gets to set up their own rules for Medicaid coverage. In order to just be eligible to apply for Medicaid in many states, you need to be a resident of that state for a number of months. When we talk about catch 22s, this is a perfect example. How is a disabled person, who relies on the services covered by Medicaid to be independent, supposed to live without it in a new state, likely without friends or family to step in, for the number of months to be eligible?

Even if you do manage to live without the services for long enough to become eligible to apply, you still have to wait to be approved, and this can take up to 3 months if you’ve provided satisfactory documentation, longer if you haven't. If approved, you are also not guaranteed the same level of care you once had because the state determines what you need. Did I mention that by successfully living without Medicaid for the time it takes to be eligible to apply and during the approval process, you are demonstrating to the state that you don’t need it? That’s right! They’re not thinking, or caring, about the fact that you’re asking people to sacrifice themselves to care for you in the interim, or that you’re settling for sub-par care in the hopes that things will soon get better. All they know is that you can survive without it, so why shouldn’t you?

I ended up withdrawing from college before graduating with my Bachelor’s because I had gotten sick. I intended on taking the semester off to get healthy, but I soon started working and eventually God began leading me up a new path, reminding me that His way is always better than mine. I never did end up fighting to move to Virginia. However, my husband and I have talked about moving. We have small communities of friends in different states, but with no guarantee I could get the health, no, the life benefits I need to live independently, we work to build a Beautiful life where we are. Today, we continue to practice the art of balancing my success, which has led to financial growth, and maintaining the services and benefits that allow me to have it. We delight in visiting other places and maybe one day we’ll build a new Beautiful someplace else.

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Mandi: A few month’s ago, I saw a powerful story about this very subject and the painful impact it has not only on people with disabilities, but also on their loved ones. Head on over to Youtube and look up Mapping the Disability Trap by Jason DaSilva. It’s 14 minutes that could truly change your perspective!

While this podcast is now available on multiple platforms, including Spotify and Google Podcasts, I encourage you to download Anchor Mobile App, so you can send me up to 1 minute voice messages with your responses and questions. Your message might even get featured in an episode!

If writing is more your thing, you can email me at th3mandibox@gmail.com, or find me on social media at Mandiboxbeauty.

[Mandi voiceover to 'Compton' music]: Tune in to next week’s episode titled, “Who Cares About Those Who Care?” where I’ll wrap up my focus on the American system talking about the lack of support for caregivers. 'Til next time Beauties!