The sad math of getting off benefits

March 15, 2015

Once upon a time there was a woman who worked most of her life. She babysat at 12, worked summers starting at 14, got good grades in school while doing a work-study program, went to college and graduate school, held many jobs during school and held more after each graduation, and 3-15-2015 1-59-07 PMalways did her best. One day she got sick. She was too sick to work. The government said they’d give her a small amount of money (after much fighting and pleading on her part.) Some people said she was lazy for not working harder, but she knew better. She was just too sick to work. Besides, all those years that she worked she paid into the fund that was now paying her. She worked on improving her health. One day she felt that she was ready to earn a small amount of money. She wondered what would happen if she ever wanted to earn her own living again. So she did the math….

I can accept that I might never be able to get off of benefits. I don’t like it, but I can accept it. My health has improved and stabilized to a point that I’m happy with. Yes, I would like to feel better, but if I never do, I can manage at this level. The thing is, that could be a problem financially. Thankfully, 20120809_220808social security disability insurance (SSDI) allows recipients to earn up to a certain amount each month while keeping benefits. I believe right now that amount is $1050. If I could earn the maximum, I could get by. Barely.

But the truth is, I’d love to get off of benefits if I could. I have always been self sufficient, and I would like to return to that. I prided myself on my independence. On top of that, I have control issues. It’s no wonder, when the biggest thing in my life – my body – is so out of my control. I hate the idea of relying on the government for my income. As I mentioned the other day, some politicians have suggested cutting SSDI by 20%! I’d much rather control my own income and larger financial situation. Sure, a boss can always fire me, and working for myself is no guarantee, but it still feels safer. That’s how control issues work.

So I decided to do the math, just out of curiosity. It started slow: how many hours each month would I need to work in order to earn $1050? Well, at $10 per hour I’d have to work 100 hours. That’s 20 hours per week. Well, that’s not happening any time soon. But I could probably earn $20, so that’s 50 hours/month. Ok, that’s more like it. I might be able to manage that in another year or two. But I can earn more for some of my skills, like my financial work, so maybe I could average $30 per hour? Somewhere in there I’d lose a few of my benefits, like fuel assistance and food stamps, but I’d more than make up for that. I played around, and felt ok about the options.

Then I started doing the math on what it would take to get off of all of the benefits. And that’s where it all fell apart. First, I’d have to replace my SSDI income. Ok, that’s tough, but I might be able to manage that at some point. Then I’d have to pay for health insurance, since I’d have lost both Medicare and Medicaid when I started earning more money. Well that’s stretching it, but I could still manage. Maybe. Eventually. It felt tight, but doable, until I remembered: taxes! SSDI income isn’t taxable, and I doubt that $1050 per month would be taxed much, if anything. But at these new income levels, I’d have to pay taxes. When I add it all up, I figure I’d need to earn at least $4000 per month. At least. And that’s just to break even!

So I can earn $1050 per month while getting SSDI, or I could earn at least $4000 per month, and the two would be equivalent from a financial point of view. But one way I’d have time to take care of my health and the other way I wouldn’t. Realistically, I just can’t see working full time again health-wise. It would have to be part-time work. And as much as I want to get off of benefits, it doesn’t seem worth it if I’d be breaking even, so I’d need to earn more to make it worthwhile. And that puts me back at my old salary (which was just slightly over $4k/month.)

It would be nice if there was a gradient of some sort. Like, if I earned $1050 I’d get full SSDI, and if I earned $1200 I’d get $150 less than full SSDI. That would be a great way to transition. But as it stands, it’s all or none.

I’m not saying it’s impossible that it’ll ever happen, but it sure feels unlikely that I’d be able to earn my old full time salary while working part time.

If you’re on benefits, have you ever considered getting off of them? Have you tried? How do you feel about it? Please share your thoughts and experiences in the comments.

8 Comments | Expectations, Frustration, Healthcare, Job, Limitations, Politics, Rants | Tagged: , , | Permalink
Posted by chronicrants

I miss having the security of a steady liveable income

March 10, 2015

Sometimes I forget what it was like to have a steady liveable income. My new “normal” has become so ingrained, it’s easy to think that’s how it always was. Then I’ll wish I could buy a new sweater, for example, and I’ll remember there was a time when I really could buy a new sweater any time I wanted to.

This is one of those things that can be hard to understand until you live it. Politicians talk about cutting social security disability payments because they see the huge amount the program costs overall. They don’t consider what it’s like for an individual to have to actually live on the average payment of less than $1200 per month. (Full disclosure: my payments are above average. Of course, the cost of living in my city is also above average. I haven’t done the math to figure out if the ratios are the same or not.)

Of course, it’s all relative. There are people who aren’t on SSDI who only earn that much. There are people who earn $150,000 per year and are in debt. The former has their own set of issues that need addressing on a federal and state level. The latter has options, though. I miss having options.

Once upon a time I earned around the average national income of $50,000. Even in one of the most expensive cities in the country, I had no problem living on that salary. I just avoided spending money on certain things. I saved money every month. So while I couldn’t shop endlessly or at high-end stores, I could definitely afford to replace worn out clothes. That was my “normal” for many years.

It’s been a cold winter and that’s fine by me! The cold is much better for my body than the heat, so I’m happy about it. But unfortunately, my wardrobe is not. I have many t-shirts, but not many sweaters. The ones I have are old and out of style. Some are falling apart. They are pilling and developing holes. But I keep wearing them because I don’t have a lot of options. Sure, I have some savings, but SSDI only covers about half of my expenses each month and I need my savings for that other half. I can’t go throwing it around on clothes that I don’t really have to have.

It’s not the clothes that I miss, it’s the ease of of those purchases. It’s knowing that any money I spent would come back into my bank account and then some. It’s knowing there was always more where that came from. It was knowing that I had years, decades, to keep earning and saving.

And that security is what’s really been taken away.

Despite what certain politicians think, I would rather be working if it meant getting that security back. But the truth is, that’s just not an option for me right now.

6 Comments | Expectations, Frustration, Job, Limitations, Politics, Rants, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

6 great things about not working

February 25, 2015

Lately I’ve been thinking a lot about how much I wish I could work.* I want to get off benefits and be independent. I want to be able to buy a new sweater. I want to move to a new apartment and afford the neighborhood I like.

Those desires are all well and good, but they don’t change the reality. The reality is that I’m not ready to work yet. The 2015-01-28 08.31.11reality is that when I do return to work, it will probably be for about 5 hours per week at a low wage. I still won’t be able to afford my current expenses, never mind adding any to the list. And I can’t change that right now.

So as long as I can’t work anyway, I might as well focus on the good things about not working. Here are just a few:

  1. No commute! Not having to deal with traffic and/or crowded trains is fantastic at any time of year, but Boston has been buried under snow recently. Streets are narrow, parking is impossible, trains are breaking down, and commuters are miserable. Then there’s the ridiculous amount of time spent commuting each week. I’m glad to avoid that mess!
  2. Avoiding crowds and long lines! When I worked, it was always at a 9-5 kind of job. That means I did errands when most people did them: in the evenings and on the weekends. Since I’m not working, I make sure to only do errands on weekdays, and it’s great! There’s little traffic and few lines. Things like grocery shopping are so much easier when the roads and stores are mostly empty!
  3. Lounging in bed! Sometimes I have plans of some sort, but most mornings I have nowhere to be. I wake up to an alarm to keep myself on a certain sleep schedule, but then I lay around reading until I feel like getting up. This morning I spent 1/2 hour in bed fantasizing about what I’d do if I won the lottery. Because why not? I get up when I feel like it and not a moment before.
  4. No bad bosses! I’ve had my fair share of lousy bosses over the years. There was one good boss, and I loved that job. The others were horrible. It’s easy to forget about those crappy bosses sometimes, but when friends complain about their bosses, I remember how miserable it was. And I’m thrilled that I don’t have to do deal with their bullshit anymore!
  5. Skipping lousy weather! Sure, sometimes I’m seeing a friend or going to the doctor, but most days I have a lot of flexibility in whether or not I leave the house, or I can change things. I watch friends complain about going to work in downpours, blizzards, blistering heat, and arctic cold, while I enjoy my cozy apartment. If I have plans with friends and we see bad weather in the forecast, we just move things to a different day. Easy! I rarely go out in bad weather if I don’t want to.
  6. My time is mine! I remember those bullshit meetings where we all sat around talking and nothing useful got done. I remember sitting at my desk with nothing to do, but not being allowed to leave. I remember having to schedule time to use the bathroom. I remember getting chewed out for being 5 minutes coming back from my lunch break. And I don’t miss any of it. Now I spend my time how I want to. Ok, I can’t always do the things I want to do, but at least those limitations are set by my body (or some other reasonable source) and not by some boss or company. I do what I want to do when I want to do it and I don’t need to get permission from anyone. I feel free!

I can think of so many other great things** about not working, but these are definitely some of the best. When I think about these, I’m glad not to be going in to an office every day. Sure, a salary would be nice, but since I don’t have that option, these reminders sure help to lessen the sting!

What about you? What are some things you don’t miss at all about working at a job? Let’s get a list going in the comments!

*Note: When I talk about “work” I mean at a paid job. Obviously we all work a lot on maintaining our health, managing our households, navigating doctors and insurance companies, and so much more. Unfortunately, we don’t get paid for that kind of work.

**Note 2: I intentionally didn’t mention how great it is to have the time and flexibility to take care of my health. I think that for a lot of us, that’s a given. Trying to get time off for doctor appointments, ducking out of meetings to take medications, not being able to each the provided food at a lunch meeting and all the rest was frustrating, stressful, and detrimental to my own self-care. I could write an entire post just on that. Maybe one of these days I will. For now, I decided not to get distracted with this, but feel free to mention it in the comments if it’s what comes to mind for you!

4 Comments | Decisions, Expectations, Isolation, Job, Limitations, Raves | Tagged: , , | Permalink
Posted by chronicrants

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.

21 Comments | Decisions, Expectations, Frustration, Healthcare, Medication, Milestones, Politics, Rants, Unpredictable | Tagged: , , , , | Permalink
Posted by chronicrants

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