Surviving on Disabilty

[Starfall99]

I've always been one of the "lucky ones" with mild CF. Of course things have declined over the years, but last year I was still doing well for a 36 year old with CF. In 2014 my FEV1 was hanging out in the low 70s. Then I caught a bad bug September 2014, and within 3 days I went from being healthy, to laid out in the hospital for 3 weeks, on oxygen for the first time ever, with an FEV1 of 51%. I've been struggling ever since. I had another drop and round of IV antibiotics in May, and my FEV1 now ranges from mid 50s to mid 60s. I tried to return to work afterwards, but between the exhaustion and shortness of breath it was just too hard. I left work at the end of July, and am currently receiving temporary disability and exploring Social Security.

It's been a real struggle slowing down my life, but I've also been struggling against my doctor. He's pressured me not to give in to the "disability label," and to work part time instead of full time. The thing is, part time work isn't going to pay the bills, especially if I keep going out on IVs for 3 weeks every 6 months or so. My hope is that I can get Social Security, and then have the freedom to work part time while still having a safety net when I get sick. In the meantime though I'm having a lot of insecurity about my decision, and often feel like I'm just being a baby and should push through this.

I'm wondering if anyone else on disability/social security can tell me about where they were at health-wise when they made the decision? Also, how do you cope with the loss of structure and purpose to your day? I don't have a partner or children, so my job was really the main focus of my days. I'm having a very hard time motivating myself to get out of bed each day, because my schedule is usually empty. Fortunately I have a good therapist helping me work through these changes, but I'd love to hear from others who are dealing with this.

Thanks!

Eliana

 

[kenna2]

I am on both Social Security and Disability. I highly recommend it. I worked part time while on this until I got a really bad string of infections and was hospitalized for quite some time. There is a certain amount you can make each month from your employer (not including your social security) where it doesn't count against you. If you make more than that, they start to keep track and then you are at risk of being taken off.

Here's how my parents put it to me, because I really didn't want to be on either because I was embarrassed. We deserve this. This is what it was created for, people like us. We work harder to maintain our health than we do sometimes at our actual jobs. If we get sick and can't work, there's no money coming in. However, having SS and Disability we at least have a safety net in place for us and at least some sort of steady income. What's more important to you? Your job or your health? You can always find a job part time somewhere, but you can't always get back your health. I also get food stamps too, which helps. The majority of my medical costs/prescriptions are covered as well...if not it's really cheap. I am honestly glad I made the decision to do this and I think of it as a job getting paid to take care of myself. I've finally gotten to a point where I can do meds at home again and I've been out of the hospital for awhile.

When it comes to structure of your day, that's all on you. I'm not working, but my day is still structured. I do however allow myself to sleep in because our body is in constant fight and repair mode. On your off days, go work out, or plan to meet up with your friends, or even volunteer (you can at least say no and it wont' be counted against you). Find some way to still stay active. I too am working with my therapist to continue to explore new ways of staying active. AVOID GOING TO TARGET EVERYDAY!!

My doctors and social workers told me to avoid doing this, but their reason behind it wasn't because of the safety net. They are worried about us giving up on life and trying to push forward. They want us to live longer and have as much of a normal life as possible. They said they've seen some people just give up and do nothing while on both. However it sounds to me like you have the drive and will to want to still live as normal of a life as possible. So I think you'll be ok. I plan on going back to work soon and am looking forward to it. It's a smart move and one every CF patient should take. Best of luck!

 

[Kat Jewel Hoffmann]

I have been trying to figure out how much I can make at a part time job.. If anyone could help me figure it out that would be amazing. Thanks

 

[triples15]

I have been trying to figure out how much I can make at a part time job.. If anyone could help me figure it out that would be amazing. Thanks

Hi Kat,

If you are on SSDI you can earn up to the amount that the Social Security Administration considers you to be performing "substantial gainful activity" or SGA. For 2015 you can earn up to $1090.00/month before they consider is SGA. In 2016 that amount will be $1,130.00/month.

If you are on SSI it becomes more complex, and I'm not very knowledgeable at all in that dept. I did find this for you on SSA's website regarding how your earnings would affect your SSI payments.

https://www.ssa.gov/pubs/EN-05-10095.pdf

The info regarding SSI and earnings is on page 17 and 18.

Best of luck to you!

Autumn

 

[Oboe]

If I remember correctly, the formula for benefit reduction with SSI is they ignore the first $20 of a given month, then subtract 65 from your total earnings, then divide what's left by 2 then subtract that from your monthly SSI. I think I did the math once on making $200/month on some small-time internet gig, and it was like (200-85)/2 and came out to 57 and change for benefit reduction per month. I'm not sure if their figure for total earned income was before or after taxes, though. Also they calculate it over a 9 month period, if I remember. So you have 9 months before they start taking away.

I could be wrong. Like I said, I wanted to make some extra cash a while back and did the math and after that and taxes and food stamp reduction it felt like I was hardly keeping anything for my effort.

 

[ladybird]

I really recommend first getting a job where you have private disability insurance and qualifying for those benefits before filing for SSDI. The average SSDI check ispossible as $1000 a month and so if you are not married or don't have family to support you it will be tough. Your lung function is still pretty good so you should be able to work for another year. Even if you have to find a PT job like Starbucks that offers private DI benefits. You can then receive both SSDI and your private DI benefits when you file for disability under each program. Private DI benefits replace about 60% of your salary. Also first check online at SSA.gov what your estimated SSDI check would be. Consider that you may need to buy Obamacare for the first year or so as there is a waiting period to qualify for Medicare. Also, Medicare does not pay for some items. I would check with Beth Sufian at the CF Legal Hotline and review her columns in the back issues of CF Roundtable to get a better sense of the rules. Be careful. Also don't assume you can make the $1090 hat you theoretically can on SSDI without potentially being audited by SSA. See Beth's column on this a couple quarters ago. Plan as best you can and talk to as many people as possible as policy constantly changes.