Beginning a life on Social Security Disability Income

Beginning a life on Social Security Disability Income (SSDI) is another big chapter in your ongoing saga of living with multiple sclerosis. In my essay titled Bored Silly: Thoughts on Coping with Disability Retirement, I examined the razing and rebuilding of our individual identities, priorities, and sense of personal value in a world designed for the able-bodied majority. In this piece, I’d like to describe the real life financial consequences of existing on a much lower income than we did as full-time employees.

Like conventional Social Security, SSDI was not originally intended to be a person’s sole source of income. The formula used to calculate SSDI takes into account your entire work history and your highest income years. If you worked for at least thirty years and were one of the multitudes of low wage-earners like I was, your monthly check is barely going to gross $1100-1200. If you elect Medicare Part B and D after 24 months, the monthly premiums will be taken off the top each month, bringing your spendable income down to $1000 or less depending on the plans you elect. Compare this to a job that pays a minimum wage of $15 per hour, which will be a reality in the near future. That’s a gross monthly income of $2400. A single person living alone is hard-pressed to pay rent, overhead, maintain a car and other living expenses on the net portion of that income with nothing left over for savings. To break even, we on SSDI would need to more than double our income.


So how do people live on SSDI? Each case is different; some of us qualify for Medicaid as well. Depending on your circumstances and your state regulations, you can qualify for as little as a meager monthly food stamp allotment if you are single or as much as Medicare premium coverage and cash assistance among other benefits if you have children or other dependents.

If you don’t qualify for assistance, there is a very popular option that the majority of us use to stay afloat: CREDIT CARD DEBT. Realistically it just can’t be avoided. In my own case, I lived without credit entirely for four years after a 2005 bankruptcy. But things changed in 2009 when I retired on SSDI. I needed expensive dental work and had no insurance or cash. So I acquired a Care Credit card that is used only for dental, vet, cosmetic and optical services. Dental work is very expensive and my debt instantly jumped into the thousands where it had been zero for years. The interest rate is 26.99%. I’m in so much dental debt that Care Credit has a lien on my crowns. I’ll probably go to the grave still owing them. They can have the crowns back then.

VISA and MASTERCARD are necessities as well. I had only one and didn’t use it for years. But last month my 14-year-old car broke down to the tune of $1800. The card is now maxed out. I recently applied for a consolidation loan.

We do have options for earning additional income, but we have to be careful. We on SSDI can earn up to about $1000 per month on top of our SSDI income. But according to the 2014 Federal Poverty Guidelines, a single person household making more than $11,670 is making above the poverty level. (see: http://aspe.hhs.gov/poverty/14poverty.cfm)

It seems oddly out of step with recent reporting that one out of three renters are paying too much for rent (higher than 30%), and one out of four are paying 50% or more of their income on rent alone. (See: http://money.cnn.com/2014/05/01/real_estate/rent-spending/)

An obvious alternative for the disabled would be to live in senior government subsidized housing. Rent is supposed to be no more than 30% of your income. But that 30% rule is a convoluted thing. I live in such a place and my rent is more than 30% of my income.

So how do I live? Like a lot of others. I cut back on food and other necessities. I drive my car so little that a tank of gas lasts a full month. Cable TV and internet are my entertainment. I wear the same clothes for years until they fall apart. And I use credit. When it gets out of hand with high interest rates, I will pay it off with a consolidation loan at much lower interest. But if the situation worsens, filing bankruptcy is always an option.

Of course, there’s so much more to the financial impact of SSDI-induced poverty. Many of you have stories, much of which would include the burden of medical co-insurance and co-pays that can’t be met. And many more have foregone carrying medical insurance at all.

What’s your story? Do you have an extra income source or are you struggling by on SSDI alone? Have you gone without medical insurance? What do you do to shrink your expenses and get by?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • Teri
    3 years ago

    SSD and mandatory retirement due to my MS meant selling my house and moving closer to family (better but $) I had not expected to go on SSD. or to retire so I was not prepared. I had gone through an expensive divorce and my reserves were depleted. I cannot earn due to retirement benefits I get from my job but they were decreased since I left early. I wish I could tell people who go on SSD, retire and cannot work what to prepare for. 1) Either go without insurance until Medicare kicks in or feel the pain of how much it costs. 2) If you had a decent job before you went on SSD, your cost for Medicare is based on your income from when YOU WORKED ! This means basic Medicare and your prescriptions will cost more for at least 2 years. 3) You have to prove to SSD that you are STILL disabled–sometimes for several years—this means getting documents from your doctor. There is more. I am hanging in there. I fell two months before Medicare began, broke my wrist, had surgery and I have medical bills I will be paying off for years. And yes, now, I have resorted to credit cards. I could have used a handbook or HOW TO. I will make it ( I hope) but I worry; and some of my friends with MS are not as fortunate as I.

  • Pamayla darbyshire
    3 years ago

    Kim, like you i went on SSDI, which just recently flipped to SS. fortunately, sort of, i have VA to supplement my monthly income, but it is still almost at poverty levels. as i am classified 100% unemployable, i can’t add any part time job from the house to my income, or i will lose what i have from the VA.

    i never thought i’d be on a fixed income, but i am. takes lots of getting used to after years of work.

  • Nobu
    3 years ago

    I am to my very best, trying to go on disability. I am looking for a new job and going through my state vocational rehab program to update my training in the information technology arena. I have the double whammy – like everyone here, I have MS, symptoms since 2000…and I just turned 60. In the past seven months I have been on two in person interviews and had about 5 phone interviews. I am not sure which is worse – being outdated on skills, having MS and using crutches or being 60? I think it is about even across the board. The only good thing, is that I have done a good job of managing my money and having reserves, but I do not want to go on disability, or retire. This is one of the big challenges that people with chronic conditions have – we are not always able to work as long, so the impact to our financial situations takes a huge hit. Anyway – I can only pity-party with myself for so long. I will keep looking for a job and will start an on-line college certificate program at the end of September through spring. And I am try to get as much on-line, free or low cost training as I can. Best of luck to us all!

  • Johan
    3 years ago

    Hello Kim. Been reading MS blogs for a couple of years now. Diagnosed in April, 2012, 2ndryMS. Typing this is difficult. My story is too long and involved for this comment. Suffice it to say, you have been reading my mail. I have no extra income source but would not say I am struggling. Stopped working last year. Started SSDI last year. Divorce was final in 2006, no kids. I am a 46 year old male who hasn’t really had insurance since I was left off my parent’s ins. some time ago. Just sold my house and moved into an excellent one bdrm. apt. Had about $10,000 from the sale of the house which will probably run out by the start of spring next yr. I tried Copaxone and Tecfidera, both for about one yr. Doc wanted to put me on Tysabri but I was susceptible to JC virus. Changed my lifestyle drastically. Now am Enjoying the Ride, as my friend Mitch says. I make it work with what I have and pray. Thanks for posting.

    JE

  • scott
    3 years ago

    Ok,, this is how ive been making it on ssdi..and drive a 2010 car that is now 4yrs old and ive only drove it 7000 mile during those yrs.. I live in my same home for over 25yrs.. so rent is still at 250dols amonth,, it was 225 til I had some work done a few yrs ago.. I have new clothes from clearance sales. still new in closet.. have no where to go except to funerals.. grocery store. docs office, and go shop for food.. I use the same stores for pharmacy and food. at times shop for cheap food at a food depot store on the same route. cable , internet and homephone only , no cellphone, don’t need on. I have a live in disables sister who is on ssdi also. helps with lights. I pay my own car note. I have help paying for prescriptions and medicare. but I pay my own part D health insurance premium. co pay is high, specialist doctors are higher. I say home all weekends. I don’t drive at nite. for bad eyesight so no parties, I don’t drink. I collect vinyl records at goodwill and such and playem on my stereo for hobby and share on facebook groups for social interacting. that’s it. so , living in the same cheap rental house for over twentyfive yrs has helped a lot. prob will never move.. and having a second person living there and u are over there check as a guardian.. that’s it.. stay single , is a must.

  • cw
    3 years ago

    Sounds all to familiar. Used credit cards for the first two years while SSA was making a ruling on whether or not I was disabled. After that no more credit cards. Ten years later had to declare bankruptcy because the cards still weren’t paid off. I don’t have cable or a smart phone so that takes $150 – $200 back in my pocket to pay for my pharmacy bills and food. Don’t eat much food either (@ $30-40/week). Pay for a secondary insurance to cover all my Medicare co-pays which has saved me tons of money. Shop at Salvation Army and Goodwill for clothing and such (every Wednesday all clothes are half off at Salvation Army). Limit my driving so as to save on the gasoline bill. I’m lucky enough to know a mechanic so I just pay for parts and a little extra for a meal for them. My car is a 1999 model. I get help from my elderly parents (Thank God every day for that). My entertainment is my computer and going out for a walk. I bundled my phone and internet ($49/month + taxes and fees). Don’t go out shopping unless I really have to or I just want to see other people. I don’t keep up with all the latest trends. I keep it simple. It is a struggle as my rent is now $740 and everything keeps going up. I have tried part-time jobs but can’t keep them long due to physical condition. I do a lot of praying.

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