The problem with SSDI’s trial work program

July 28, 2015

When you’re on SSDI (social security disability insurance) the presumption is that your disability prevents you from working. Ok, I get that. But what if you want to return to work part time or full time? Ah, that’s and interesting process.20120809_220808

Everyone gets a different amount of money through SSDI. The formula is based on how much you paid into the system, and that in turn comes from the salary you earned and over how many months you earned it. You might be getting $900 per month or $1800 per month. If you’re on SSDI for more than 2 years then you’re eligible for Medicare, which is health insurance. You’re also more likely to be eligible for other benefits.

Now, what happens if you start doing some work? Well, at a certain point the SSA (Social Security Administration) decides that you’re able to support yourself. That point is a set number. It’s not a percentage of your benefit. Nope. It’s a set number: $1090 per month right now (this can change each year.) So if your benefit is $900 and you start earning $1100 then you lose SSDI and Medicare, but that might be ok with your extra income if you’re earning $1100 every month. You might only earn it occasionally, though (more on that in a bit.) But if your benefit is $1800 and you earn $1100, then you lose SSDI and Medicare and, unless you have unearned income from some source (like a spouse, alimony, or investments) then you’re probably screwed.

That’s how I feel now: screwed. I’m ready to do some small amounts of work, which is exciting in and of itself! I recently earned around $1100! This is very exciting! If it was all in 1 month, though, it would count towards my return to work trial period of 9 months total. Those total 9 months are spread out over 5 years, so I could work for 2 months per year, and still lose my benefits. That’s not good! Luckily for me, it was spread out over 3 months, at an average of under $400 per month. What a relief!

But wait, isn’t there something wrong with the system if I feel relieved to earn less money? Shouldn’t the goal be to get me back to work so that I don’t need benefits?

What if I make more than $1090 per month for 3 months this year? Then what if the same thing happens again next year? I’d stop working altogether so I wouldn’t risk going off benefits. I can’t afford to have 0 income, and I definitely can’t afford to lose my health insurance!

Instead, the system should encourage me to work part time with the hope that I would build up to more part time work or even full time work! The trial work period should only cover a short timeframe, like a certain number of months worked in a 1 or 2 year period. There should be a grace period for Medicare.

But with the current setup, I’m scared to attempt to go back to work. What if I try to work, lose my benefits, and then fail to continue working? Yes, there’s a grace period where I can get back on benefits, but it’s short. And I’m scared. It took me more than 2 years to get on SSDI in the first place. I can’t take a chance on losing it.

And that’s why the system doesn’t work.

Have you felt the same way about SSDI? How do you handle it? Do you hold back on the amount of work you do in order to stay on benefits?

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

Four years later

July 21, 2015

My physical therapist asked “How does that feel?” It took me a moment to answer, because I had to first block out of my mind the pain in my right wrist, in three toes on my left foot, in four toes on my right foot, and in my left knee. Finally, I had a sense of how my neck felt.

I started this blog 4 years ago today. It was very different then, in so many ways. I was very different.

Back then, I was amazed if 1 or 2 people read my blog each day. Today, I get at least 20-30 readers per day, sometimes over a hundred in a day, plus over 200 who get the blog emailed to them and more who read it in Feedly and other

Where readers have come from in recent months

Where readers have come from in recent months

readers. This blog has had about 33,800 page views…. That’s not much compared to some blogs, but I’m very happy with it. After all, the goal was never to win any popularity contests, but to have a small community. I have a bunch of twitter followers, too. For the first few months I blogged every single day. I still don’t know how I managed that. Now I average 2 posts each week and that feels about right, but I never pressure myself to write and I never worry about keeping any kind of schedule. Best of all, I have an active audience who often comment on what I write and on each other’s comments; that’s what I wanted from the beginning.

And then there’s me. Four years ago today I was working at a job I didn’t particularly like, going in at 9, leaving at 5, and barely surviving it. Every morning I struggled to get ready for working, have to lie down and rest for 20 minutes after my shower just so I’d have the energy to put on clothes. I came home every evening and did nothing but watch tv, eat, and write one blog post. Gone were the days of socializing after work. I started to make mistakes at work. I was always exhausted and I didn’t know why. I was in more pain than ever. I only felt decent when I was on Prednisone, but when I went off that, the fatigue and pain returned full force. So did the gastrointestinal symptoms that had gotten somewhat better while I was on the drug. I had no answers, and my doctors didn’t know what was causing my symptoms or how to help.

Now I have some answers, though probably not all of them. I have taken charge of my life. I no longer turn to doctors for all the answers; I do my own research. I still deal with fatigue and pain, but my gastrointestinal symptoms are almost entirely gone. I understand the workings of my body much better than I did before. I’m not working, or even trying to work, and that takes away so much pressure and stress. On the other hand, it also leads to less financial security, and that does have me worried. I no longer travel, but I have learned to be happy and content where I am. In fact, that’s the biggest change: despite all of my health problems and the other areas of my life they have affected (money, dating, travel, and so much more,) for the first time, I feel good about who I am and about where I am in my life. I am happy and content in a way that I never was before. I take time for introspection more than I did 4 years ago and I have learned more about myself through this long process than I ever would have expected.

If you’ve followed this blog for a while, you’ve watched me struggle to figure out which foods I couldn’t eat, to start a gluten-free diet, to deal with insensitive jerks, to find new doctors, to beg for tests, to cajole for new medications, to deal with dating, to find ways to tell friends and relatives and acquaintances and strangers about my health. You’ve read my political opinions, my frustration, my anger, my joy, my views on so many topics, and my issues with everything from sex to diarrhea. It’s been an interesting journey and I’ve been so grateful to have you here with me as I take it. It’s been rough, too. Still, I see some overall improvement. I get frustrated a lot of the time that the improvement is so slow, and that for every 3 steps forward, I end up taking 2 steps back. Still, I’m grateful for any improvement I can get.

So I’m looking back over these past 4 years and it makes me wonder: where will I be another 4 years from now? Only time will tell, but I’ll do my best to head in a healthy, safe, positive direction.

What about you? How has your situation changed over the past 4 years, 4 months, 4 weeks, or any other time period you want to think about? Are you trying to change direction? Or are you able to forget about the past and be present only in the moment? (I’m still working on that myself.) How are you doing?

4 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Job, Limitations, Milestones, Pain, Raves, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

Always rethinking goals

March 27, 2015

I had a plan. Then I got sick.

But then, you know what they say about the best laid plans.

This morning I was talking with a friend. Sometimes I do some budget consulting. I don’t have the energy to do much of 3-27-2015 4-01-42 PMit, but I love it, and do it when I can. I always begin with discussing the person’s/couple’s goals. These goals can be anything: buying a house, buying a smart phone, getting a dog, having children, traveling the world, starting a business, retiring young…. there are endless possibilities.

Today I happened to be working with a friend, so it was more casual than when I get paid by strangers to consult for them. After we’d gone through her goals, her spending, her debt, her income, and her savings, we talked some more about goals. And she asked me about mine.

Most people assume my goal is to get healthy, but it’s actually not. I know I’ll never be completely healthy, and I also know I want more than that.

We all had plans that were different when we were healthier. Some got derailed because of health, some got derailed for other reasons, and some were achieved. After my friend left, I thought again about my goals. I think the most unusual thing about them is how often I think about them and change them. Most people, I would guess, hardly ever step back to look at the bigger picture. They assume they’ll do the things society tells them to do, like get a job, get married, buy a house, and have children, probably in that order. But they don’t think beyond that. I know I didn’t. In fact, that’s about what my life plan looked like.

Just before I got sick, I started thinking about leaving my 9-5 job and starting my own business. I didn’t know what that would be. I thought I might try to earn a living off of blogging (spoiler alert: this blog is 4 years old and earns nothing, so that won’t be how I earn my fortune.) I considered some other options. I dated and looked for Mr. or Ms. Right. And mostly I put one foot in front of the other.

Since I’ve been out of work, I am constantly thinking about the present and the future, about what I want and how to achieve it. I change it constantly, as my health and moods change. I’ve come up with several potential ways to work for myself from home part time. I know that I want a dog. I want to improve my health as much as possible while not being obsessed with it. I want a dog. I would love to find a life partner, but I’m also currently content with being single. I want to live someplace quiet and peaceful, preferably near the water. I want to exercise regularly, including physical therapy. I want to be financially stable. I want to spend less time home alone and more time with people I love. And did I mention that I want a dog?

Most people don’t think about their goals often, if at all. Having a chronic illness doesn’t necessarily change that. For some people, it might make them think about their goals less. I happen to go the opposite way. I need something to reach for. I need a happy place to aim for. It gives me a reason to try. Let’s face it, living with chronic illness is work! Reaching for my goals gives me a bit of incentive not to give up on that work.

What about you? Do you spend a lot of time thinking about your goals? Do you avoid them? Do you change your goals over time? What’s one thing on your list?

4 Comments | Decisions, Expectations, Job, Milestones, Raves, Relationships: Family & Friends & Dating & Sex, Unpredictable | Tagged: , , , | Permalink
Posted by chronicrants

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

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