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.

A few questions for certain politicians

May 21, 2014

It’s tough when the national budget doesn’t balance. I get that. But what what are citizens supposed to do when they have no hope of balancing their personal budgets because they are too sick or disabled to work?

We pay into Social Security so that it will be there when we need it. Then we become disabled and need it, and too many of us are denied it. I’m not even going to talk about the fact that the payment is too small to even pay a modest rent in many parts of this country. I’m just talking about how hard it is to get this so-called “safety net” when we need it. And yet certain politicians still suggest that we need to cut back on the program. So here’s my question for them:

Without social security, or with reduced payments, how are we supposed to pay for basic things like rent, food, and health care?*

I’ve heard one common answer many times: your church will take care of you. Um, no. What if you’re not Christian? What if you’re not religious? What if you just moved to a new community and don’t have a church community yet? What if there’s no church or other religious establishment nearby?

Now, let’s suppose none of those issues apply in your care. Let’s say your church and its members want to help, but they don’t have enough money. Are they expected to pay all of your bills for the rest of your life (or until you turn 65 and standard Social Security supposedly starts?) Could they really afford to pay the housing, food, and medical bills for all of its members in need of that financial help? So here’s another question for those politicians:

Are the only people “worthy” of living in this country those who are able to work, those who marry people who can work, those who inherit large amounts of money, and those who win the lottery?

I greatly resent having to prove that I’m too sick to work. But what I resent even more is going through this process while healthy people on tv suggest that the government needs to cut back on these payments. I’m sure that seems like a perfectly reasonable approach for all of these well-paid people who assume they will be able to work for as long as they want and so others should too. But that’s the tricky thing about disabling conditions: most of them are not predictable years in advance. Just because someone is working now, doesn’t mean they will be able to work 10 years, or even 10 months, from now. Maybe they will and maybe they won’t. And if they can’t? Will they change their mind about the policy? What if it doesn’t happen to them? What if it happens to a friend? Will they pay their friend’s bills, or will they say that it’s not their responsibility? Will they tell their friend to find a church to help out? Or will they realize how insensitive and callous it sounds to suggest that their friend shouldn’t have access to the government system they paid into that’s designed specifically to support people in this particular situation? This begs the question:

Should everyone be treated equally? Or do you suggest different treatment for already-wealthy individuals?

It’s easy to suggest that disabled people are lazy and choosing not to work. It’s always easy to use a stereotype to justify your own prejudice. It’s also easy to say that all Jews are cheap, all bisexuals are promiscuous, all black teenagers are in gangs, and all women are overly emotional. It’s easy, but that doesn’t make it true. These stereotypes might be true for some people, but they are not true for all people. Just as some people on SSDI are lazy and choosing not to work, but that is not true for everyone.

And that’s why, most of all, I resent being stereotyped as a justification for rich politicians looking to score political points and get even richer. That’s why, most of all, I have to ask:

How can you live with yourself?

*Yes, there is Medicare and Medicaid and The Affordable Care Act (Obamacare,) but those are not available to everyone and they do not cover all costs. I wish they did, but they don’t. I have great health insurance, one of the best plans available. Last month, in addition to my premium, I spent $600 on over-the-counter medications, copays, parking at medical offices, visits with my naturopath (who has been more helpful than the doctors who are covered by insurance,) and other things. Other months have included items such as orthodics that are necessary to me but are not covered by insurance. Of course, this does not include the so-called extras, like gas to get to appointments or paying for help with things I can’t do like cleaning and shoveling show.

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