Even when they’re wrong, it’s still my fault

August 12, 2015

Let’s face it, sometimes customer service representatives aren’t trained all that well. I once had one of those jobs, and I mostly learned what to do through trial and error. I’m sure some callers were annoyed at my inability to immediately solve their problems, but since I was offering technical support on phones, it wasn’t a big deal if something wen8-12-2015 6-10-09 PMt wrong.

Until I got really sick, most of my experience with calling customer support fell into those kinds of non-essential categories. Maybe the cable bill would be screwed up or I wouldn’t have internet access for two days. This was really irritating, but I knew it would eventually be fixed. I also knew that I’d receive reparations for my hassle.

Unfortunately, it doesn’t work that way with government entities. If they get something wrong, it’s still considered my fault. A few weeks ago I wrong about my frustration with SSDI benefits, mostly based on a phone call with a representation at the SSA (Social Security Administration.) I’d read everything, but it’s confusing, so when she corrected me, I assumed she was right. I should have known better. Thankfully, reader StuckInTexas commented and corrected me. But what else are they getting wrong?

I called the SSA 4 times to report earnings from a bit of work I’d done. It was handled 4 different ways, including 1 representative who was so confused, I just gave up and hung up the phone.

Yesterday I called Medicare to ask if a certain treatment was covered. They said yes, but only under certain circumstances. Those circumstances weren’t 100% clear, and when I asked questions, they just reread the same passage. To me it sounds like what I need will be covered, but they wouldn’t confirm that. They were happy to repeat, though, that it’s my responsibility to make sure it’s covered. How is that logical? I can understand that it’s my responsibility to call and check, but if I call and they refuse to confirm, then what? Do they really expect patients to move forward with appointments and treatments without knowing if they’re covered? Obviously that’s sometimes necessary, but often it isn’t.

MassHealth, our state Medicaid, was different. She simply said she couldn’t tell me and then she passed the buck: she said my doctor had to call the provider line. I can only assume the representatives on that line are better trained and will be able to answer the question. When I asked about covering a TENS unit, for example, she didn’t know what it was. When I spelled it, she still didn’t know. Medicare doesn’t cover it, but at least that representative knew what I was talking about. I think. Maybe she didn’t. Maybe they really do cover it. I don’t know!!

Yesterday I got a long form in the mail from the SSA. They want me to fill out all earnings I received since I went on SSDI. This was triggered by the earnings I recently reported, but I thought that only happened if the earnings were $750 or higher in one month. My earnings weren’t over $400! So now what should I do? I don’t want to have to fill out the form, but even more, I don’t want to be put in the category of people they “observe” unnecessarily. I want to call the SSA to check on this, but I’m pretty sure that if I call 5 times and speak to 5 different people, I’ll get 5 different answers! And if I do get 5 different answers, they’ll still say it’s my responsibility to handle this correctly. If I get 1 answer from everyone and it’s wrong, then the SSA will still say it’s my fault, even if I do exactly what they tell me to do. Don’t believe me? Look at what happened to these disabled folks who were on SSI.

I will take responsibility for my own mistakes. But I think these big government entities should do the same. What do they really expect from us? If they can’t manage to properly train their own employees in these complicated rules and regulations, is it reasonable to expect the general population to understand these same complicated rules and regulations? I don’t think so.

Have you encountered anything like this? How do you handle it? And if you’ve had to report income while on SSDI, did you have to fill out tons of paperwork? Please comment below so we can help each other out!


A social security and long term disability update to make your hair stand on end

July 8, 2014

From the first day I decided to leave my job almost 3 years ago, my top priority was to get my health back on track. Unfortunately, various forms of insurance have worked to, intentionally or not, make that as difficult as possible.

My health is my priority, but money is still necessary. I need it to pay for any healthcare that insurance (when I have it) 20120809_220808doesn’t cover, and also to pay for little “luxuries” like rent, electricity, and food. When I left my job I had short term disability insurance. I filled out one short form and had benefits. It was nothing short of miraculous! Unfortunately, the miracles ended there.

If you’ve been following this blog for a while, you know the basics: I was denied long term disability insurance (LTD,) went through a long, frustrating, stressful, difficult, expensive appeal with a lawyer, and was finally approved. What you don’t know is that when they did their let’s-see-if-she’s-still-disabled review of my medical records, they denied me again. They said I was well enough to work. Of course.

Thanks to the LTD fiasco, I had my employer-provided health insurance, then nothing, then the private insurance again (they were trying to mollify me after a big error on their part), then nothing, then MassHealth (our state medicaid), then private insurance, then nothing, and now MassHealth again. And yes, that’s all been in the last 2.5 years. And I think I left out a transition. It’s been hard to keep track, but I have a record of it someplace….

If you’ve been following this blog for a while, you know that I applied for social security disability insurance (SSDI), was denied, appealed, was denied again, appealed again, and got a hearing before a judge. What you don’t know is that…. I WON!!!! Yippee!!!!!!!!!!!!!

I was certain I’d win that last round of LTD, and then I lost. I was certain I’d lose the last round of SSDI, and I won. So what have we learned from this? We’ve learned that my instinct for insurance appeal outcomes sucks. We’ve also learned that the system is horrible.

I told a bunch of friends about this, and I mentioned that I’ll have Medicare (the federally-run program) for health insurance now, in addition to MassHealth. A couple of friends who’ve been through this rushed to remind me that there’s a waiting period for Medicare. Yes, if you’re so sick that you need SSDI, they make you wait another year and a half before you get health insurance. Brilliant system, eh? But the ridiculous part is that I’m long past the waiting period! My benefits are retroactive, and I was eligible for Medicare 4 months ago!

Of course, nothing is ever easy with any of this bullshit. So even though I got the judge’s decision several weeks ago, I still don’t have benefits. I was going to wait to write this post until after I knew more, but I found out yesterday that my social security office has 60 days from the date of the judge’s ruling to process my file. It seems silly to wait another month and a half to write this, so here I am, typing about the benefits I’ve been told I’m owed, but which I don’t have. I don’t have the back payments the government owes me. My lawyer does not have her fee. I do not have Medicare. I can not use the ruling to get onto the disability-related portion of MassHealth or to get any of the other random benefits I would get with it, like a reduced-fare subway pass. Worst of all, I can not see new doctors (and I need several) under a stable, established health insurance. This probably won’t be an issue, but after everything I’ve been through, it makes me nervous.

Too much stress is bad for even the healthiest person. It’s much worse if you have an autoimmune disease, and I have several. It’s even worse if you have adrenal insufficiency, which I have. So the stress has literally been holding back my recovery. Last year, one of my medical practitioners told me that she didn’t expect me to make much more progress until the LTD and SSDI issues were resolved, because my high stress levels would impede any treatment. She agreed I was handling the situation as well as could be expected, but anyone going through it would have a lot of stress, and therefore a lot of stress hormones.

Then consider the number of hours I have put into this. I tried to keep track at one point, but it was too depressing to see. I was constantly submitting requests for medical records, following up, and reviewing the records. I had to stay on top of doctors who didn’t fill out forms completely or on time. I ferried paperwork to and from my lawyer. There was so much crap to deal with. Some weeks I didn’t do any, but others it was like a part-time job. But unlike a job, the “payment” would be either nothing, or maybe the money that I rightly deserved.

And don’t forget the financial cost. Yes, I spent money on a lawyer. I also had the uncertainty of income. A friend with chronic illnesses sees a therapist who isn’t covered by insurance. I can’t do that. She gets regular massages. My doctor and physical therapist want me to do that, but I can’t afford it. Maybe I couldn’t have done all of that anyway, but I could have made long-term decisions if I’d known I’d get the benefits I qualified for. I have worried about money more in the last 2 years than I ever have before in my life.

And now? Now it isn’t perfect. Now I’m still waiting for everything. Now I know that my monthly SSDI payments aren’t nearly enough. If I can’t return to work at least part time within 2 years (when the SSDI pack payments and my savings run out), then I will have to move in with my parents.

But now I also have less stress. I have more time. I can finally do what I’ve wanted to do for the last 2.75 years: I can make my health my #1 priority.

Please use the comments to tell your own SSDI stories. Vent your frustrations. Share your experiences. For those of us who’ve been through this, we might as well lend an ear to one another. Or write any other comments you’d like.


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