The Shocking Truth About Social Security That Could Destroy Your Benefits

Episode Show Notes:

Hello beautiful people! The last few days have been filled with phone calls, appointments, research, confusion, and anger at the government…. shocker! In today’s episode, I share my recent experiences with the Social Security Administration, the challenges and frustrations of navigating disability benefits, and provide insights into the process and implications for others in similar situations.

Resources:

Social Security Administration - https://www.ssa.gov/

Understanding Social Security Disability Benefits - https://www.ssa.gov/benefits/disability/

Episode show notes & transcripts can be found here: ⁠⁠⁠⁠⁠www.digitalactivismpod.com/⁠⁠⁠ ⁠⁠ 

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Keywords:

Social Security, disability benefits, government bureaucracy, personal story, social security process, disability insurance, financial management, government assistance, social security review, disability advocacy

Key Topics:

Social Security process and challenges

Impact of income reporting on disability benefits

Navigating government bureaucracy and communication issues

Episode Transcript (approx.):

Intro video (00:00)

Caden Nelms (00:16)

Hello, beautiful people. Welcome back to another episode of Digital Activism. This one is a little bit different and I, as you can see in a different space, I am back in my room. Long story short, the other office is not at my home and with Lily, my producer, being ⁓ a college student, working a job and doing an internship,

She cannot be here as often as she was, especially over the summer. And so I needed a space from home I could film that I could do whenever, because I have a lot of exciting videos and podcasts coming up. I have my calendar just off camera to the right on my wall over here, and it is chocked full of podcasts I'm going on and guests that are coming on my podcast. So.

I need a space, so I'm in the corner of my bedroom. I have set up a shelf behind me. I have my light. I'm starting to light to my ceiling so it's not reflecting in my glasses. And it's shockingly not in the pictures behind me. And I'm hoping everything is set up correctly. So I'm hoping the audio sounds good. So I'm wearing the mic. I have my in-ears fixed. My phone. Hopefully this video looks better. I know last time I said.

It will be in video and it in fact was not. I'm hoping it is. And yeah, so this is where my room and if you hear a little background noise, I apologize. I'm going to be playing around with soundproofing. I got some blackout curtains for my room. So we are all set to go fingers crossed. Hopefully if you see me looking off over right here to the right of the camera or to the to the whatever side of camera this is for y'all.

⁓ That is my computer and my monitor so I can see who I'm talking to or what I'm looking at. So yeah, with all that being said, this episode, again, a little bit different. It might be a little more of me venting than just talking about whatever because the last couple days have been ridiculous. So essentially, I'm gonna take you back a few days.

A few days ago, I received a letter in the mail from the Social Security Administration saying it's time for my yearly visit and checkup to make sure I'm still disabled, make sure everything is still the same. And honestly, I felt they've missed a couple of years. I don't recall doing it every year. That could just be me. I have no idea. My sense of time is terrible. And it was still addressed to my mom. it said, let's see, the wording was something like,

please see the next page or bottom of this page for information that you need and proof that you need come time for our meeting. And our meeting was gonna be a phone call, they scheduled it, I did not get a choice. it was gonna be a mom's phone. I looked, there was no information to be found on the paper, on the back of it, on the next page at the bottom, nowhere does it say the information and proof of...

I guess disability and address and income and all that that I need, like nothing was there. And so I tried calling the phone number they provided if you need assistance and the local office was not answering the phone. I tried. I went on the phone for like probably an hour. I tried two different days. Nothing would work. And so I called the 1-800 toll free number because I did not want to be screwed in the process and not have what I needed.

So I called them, Wait for two hours on the phone, I believe. And I am eventually connected with someone. We talk about everything. I am on, I've probably spent close to five or more hours on the phone, whether it be hold, ⁓ being rejected, waiting to hear back or whatever from social security in the span of less than a week.

Ridiculous. So, this guy, we go through the process of everything. He didn't see it on their end either of what I needed or didn't need. So the letters that they send out, wasn't, I wasn't just missing a piece of paper. There was none and nothing in the system either. And so he tried to call the local branch. They would not answer him. He sent them a message. They did not answer.

And so he gave me a list of like generic things to have that are most common for people to have. And so I was like, okay, great. And then at the very end, he was saying, ⁓ you're not your own representative. I need to speak to someone named Angie, who is my mom, who was my representative before I turned 18. And it was just never switched. And I said, well, thankfully she's here.

and we found out that if she wouldn't have been, all that waiting would have been for nothing. So that was a little annoying and I said, well, can I change that? So I'm not on representative, I can make changes, I can call, whatever. And he said I had to do it in person at the local office ⁓ and that he could not do it. I could not do it online. It had to be him. And so he gave me an appointment for the next day. So this is when...

Tuesday at this point. So fast forward to the next day, I go down to the office, like 30 to 45 minutes away.

I get there and I just need to sign a piece of paper that says, like, mom's giving up her rights as a representative. I'm taking over. That's all that it is. She was there with me. Of course she drove me. And then they're like, well, let's just go ahead and do your yearly review. Instead of waiting for the phone call in a week or two, let's just go ahead and do it in person. And I didn't have anything and they didn't seem to care that I didn't have anything. So I wasn't prepared. I have my social security card and my ID. That's all I had. Cause I was just switching.

the person. So we are talking to her and she's like nothing really has changed and our address is still the same blah blah blah blah blah. Then I mentioned to her I brought it up I was like hey I think y'all cut my social security check a few years ago because upon further research it was because y'all assumed I was not paying my part of the bills for the household whether that's groceries utilities whatever.

There's this situation, I cannot remember what it's called, that if you do not tell them that you are putting money towards utilities or bills, they automatically take a chunk of money, out of your check to compensate for that. I did not know that. They did not tell me that. And so when I told them, hey, I am paying towards it,

she's like, ⁓ how much? And I told her and she said, okay, well that's like your part of the bill for how many people is in your house and what y'all's monthly bills for utilities and everything is. So we actually owe you back money. And so they're supposed to be dropping money into my account in the next few days, knock on wood. And it is...

to make up for the money they took out of my check every month since it's been changed because they were wrong and did not ask and assumed, I guess, or did not make it clear either way. So that's good news. That's the better part. The bad part is, this again doesn't make sense to me,

She asked if I was still unemployed. I said, no, I have a part-time job because I do and I'm not gonna lie because they can see that. And before she even asked where, she said, oh, is it at blah, blah, blah. So obviously my records are there from my income. And I was like, yes, that's it. And she said, okay, when I told her when I started and her eyes got really big, she went, uh-oh. And she said, okay, well, you were not reporting that I said, I didn't know I was supposed to. It rocked on.

By the end of it, she told me that what I have to start doing is at the end of every month, within the first 10, so for example, May, for the first 10 days of June, I have until then to report May's income. Then that income will determine how much I get from them in July. So it's two months ahead. And that's how it works consistently. So I have to look at all my income and put like push it.

you know, push it forward. For the next two months is how they'll determine it. For every $2 that I make, they take $1 out of my check. And so I'm fully transparent with money. It does not bother me. My check right now, before anything, after cost of living increased in 2026, my check was around $660 something.

And so now, with that adjustment of me paying my part of the bills, it would go up, don't know to what, didn't specify. And then she's like, but now that you're making so much, like this amount of money, your check starting in July will only be about...

$200, 200 and something and that can fluctuate. So if I do a speaking engagement that pays, then it will be even less. If I have a brand deal, it's even less. whatever it may be, it fluctuates and it's for the two months ahead. That's annoying first off. I don't understand that, but I guess it's an income based situation. Not only do I not understand it, but they did not educate me on that, especially after turned 18. I feel like I should have a...

an individual, a contact to explain these things to me, a meeting at 18 to explain this stuff to me, a meeting at 21, whatever it may be, they do not tell you this at the yearly review, anything. They do not give any information to make it so difficult where you're not getting the full potential of your benefits. They're taking money away from you. And so it's just whole situation. And so I can not make

$400 more at all for any month or I would lose my check completely and if my check goes down to zero I then lose my disability insurance which covers my wheelchair, my medications, doctor appointments, hospital bills, everything. My lifts, all my medical equipment, it covers it all and if my check goes down to zero dollars from Social Security I automatically lose my Medicaid insurance.

That's what I've been told. I have talked to a couple of people and no one that's an expert yet and they all think that is ridiculous. Some of them disagree. Some of them think it's just wrong and the government is screwing me and every other disabled person over which shocker. And so yeah, that's the next thing we're trying to figure out is that.

I wanna apologize for missing a couple weeks of uploads between this whole social security thing, getting that letter in the mail and kind of moving the studio office space situation to film here more consistently and have an actual space and I ordered the light and the curtains and everything, getting that set up. I was not here for a couple of weeks. There's also been some potentially exciting stuff behind.

behind the scenes in terms of podcasting. I have a speaking engagement thing coming up soon that I don't think I can talk about anymore right now, I'm not really sure. I had to get clarification on that. And life has been so busy, which is a great thing, I'm so excited. I have podcasts like I mentioned earlier for here and I'm going on other podcasts.

pretty consistently for the next two weeks. So that's very exciting. That's why I need to get this space figured out and ready. I, let's see. Yeah, I'm back. I'm gonna be uploading. Hopefully, I know I said this previously, I think. I want mom to be on episode. She is almost back to normal after her shocked She is getting there. She'll be soon, in the next week or two. But I'm trying to get her to come on. She's gonna be on the podcast.

We're gonna squeeze in this tiny little corner of my room. She may sit on the corner of my bed, who knows? But I'm gonna convince her to be here, hopefully in the next couple of weeks. But yeah, I know this episode is more just ranting about the government and social security, which were not shocked sucks. But yeah, so thank you for being here. I'll talk to you all next week, and I love you.