Living on SSI

[Akoto]

Though another thread evoked a lot of emotions within me, I would like to keep this to the point.

For those who do not know, SSI is not like the SS most people think of. The acronym stands for Supplemental Security Income. It's a needs-based program. In my case, I am on it because I am disabled, as are many others who also receive SSI. It was the best I could do because I am only 26, and I've had my condition for a long while. There wasn't enough time for me to contribute enough work credits to get anything superior, but I'm grateful for what I have.

With SSI, you receive a certain amount of money each month, as well as Medicaid. In my case, it's $674, which is the federal cap. I will never make more than that per month for the rest of my days, except for when the COLA goes up. Some people receive less if they have other forms of support, some receive a bit more if their state supplements SSI. Still, it's not as much as I made when I was able to work customer service.

Some folks think this sounds like a fine deal. We get monthly income paid by their taxes. What they neglect to mention is that there are expectations for how that money is used. On SSI, you may never have more than $2000 in the bank, or you are penalized. The money is expected to go necessities first (rent, food, water, electric). Personally, I was only bumped up to the cap once we arranged for me to pay rent to my parents. The minimum payment for that to happen was $370/mo, though it's different based upon how the math adds up in your household.

The rules are pretty stringent as to what you can and can't have. One car, one house. As I mentioned above, the money has to go to necessities first. My month starts with $674, minus $370 for rent, minus fees for food (stamps alone aren't enough), hygiene products, dentist, and other needs not covered. If my budget allows, I will buy myself a book so as to preserve my sanity while bedridden. That's my monthly luxury.

SSI is not something you can just sign up for and start living off of tax contributions. You must be in a serious situation to qualify, and they do not make it easy. In my case, it took two years to get approved. They rejected me on initial application and appeal, even though I had support from the University of Miami's medical system and my physical therapist (a professor herself). It took going before an administrative law judge, someone there in the flesh, to demonstrate how bad my condition was. At that point, after the long battle and with the assistance of my lawyer, a fully favorable decision was granted. Many people have to fight and wait even longer than I.

The continued legitimacy of your SSI status is regularly reviewed. I must go in every six months for a financial review which covers my living arrangements, reviews my bank statements, and checks my receipts if necessary. Every three years (it's different based on your condition), I go for a medical review to determine whether I am still disabled. So, they both review you and keep you mindful that your activities are being checked up on. It's unnerving to live with a set of eyes over your shoulder.

This is all ignoring that most people on SSI do not live happy, luxurious lives. The funds don't allow for it, and typically, our conditions don't. I spend most of my time bedridden, with the internet and my parents as my only connection to other humans. Without SSI, we disabled folks would be on the streets and most likely dying. Many are because they didn't make it through the gauntlet to approval.

Receiving SSI changed my life in that I no longer have to worry about being able to get medical care, and I no longer need to feel guilty for being a burden on my parents. It did nothing to take away my pain.

[sinkingfeeling]

1. Many people believe SSI means 'social security insurance' and use it to refer to the retirement

piece. SSI comes out of the general tax revenues and not withholding.

edited

[Akoto]

3. Good point. I updated my OP to include the full name of SSI. n/t

[damntexdem]

10. And they are misinformed.

And their misinformation causes no end of problems.

[kentuck]

2. Thank you very much for posting this.

You are very courageous and honest.

[sketchy]

4. That other poster should beg your forgiveness

for even posting that uncaring post. I wish you all the best.

[SDuderstadt]

5. + 1 n/t

[dionysus]

19. why SDuderstadt, where you goin with that +1?

[SDuderstadt]

32. Why, dionysus!

Are we cross?

[Akoto]

8. I appreciate that, but I don't want an apology ...

I just want people to understand the circumstances. Many folks are ashamed to be on SSI, largely because society doesn't understand and shuns it as a 'welfare queen' thing. There's no reason for that to be so.

[eleny]

6. I pointed out the program requirements in that thread and posted a link

But I noticed that the OP never returned to participate in the conversation nor acknowledge my reply.

I don't believe they were sincere. Sounds more like flame bait.

The program is an important safety net.

[rurallib]

7. Thank you for this post.

My wife had a brain hemorrhage when our 2nd daughter was born. She had a good secure job in a state hospital. At that time they accommodated her disability. But 15 years later they put her on disability. She had DB insurance, but as with most insurance it had a cap which was all too short.
Some branch of SS picked up the slack, not sure which. Without that let us say that our life would have been drastically different. Private insurance would never offer what was truly needed to cover her loss of income.

Thank goodness SS and its changes were passed when they did. Since Reagan, I doubt any such thing could ever pass again.
I have never had a problem with the government taking money for social insurance programs. We have been pretty fortunate in our lives. I know many, many who have not. I know individually i can only make a small dent in that problem, but together we can allow most to live quality lives.

BTW - hope DU serves as a good conduit to the world for you.

[Blue-Jay]

9. .

:thumbsup:

[JitterbugPerfume]

11. all I can say is

thank you for posting this

on edit--nice TS for "you know who"

[bobbolink]

12. Thank you! That two-year waiting is one cause of homelessness! How many can wait two or three

years With NO Income (you can't have income and apply for SSI), and still maintain any ability to live?

It is Shameful that progressives mostly don't know the facts of this, let alone get active in changing it.

There is NO WHERE in the US where someone on SSI can afford the local housing! NO. WHERE. Yet, it isn't an issue.

Thank you for bringing this to light. You are dealing with so much already, to have to deal with that insensitive and uncaring system on top of it.... SHAMEFUL!

:hug:

[Mnemosyne]

18. It is those that 'have' that decide how much people on SSI or PA need to survive,

I only wish those bastards had to try to live on what they consider a 'reasonable' amount for 'survival'. Same with minimum wage, disgustingly low...

[tishaLA]

29. When I was homeless, I knew a woman who was HIV+...

schizophrenic, and functionally learning disabled. She waited 2 years to get approved. It was incredible to me: here was almost like a poster child for the necessity of SSI and she had to wait and wait.

You can imagine. Living in a shelter after being homeless for years, hoping that your "golden ticket" will come in the form of less than $700/mo~! It's depressing.

[bobbolink]

31. All that you say is absolutely true. Can you explain to me why this *Isn't* a "progressive issue?

Can you please tell me why most "progressives" have no concept of this?

Can you tell me why this just doesn't rate exposure on Rachel, on Hartmann, etc?

What. The. Hell?

That poor woman. And she is certainly NOT one of a kind! :cry:

[Enthusiast]

43. The other day a family member told me

of someone receiving SSI because they are gay. These stories really are commonplace.

[axollot]

46. That is my biggest beef with the system. The only reason I was

able to apply and not go from "job to job" due to days off etc. (which prior to car accident I was a model worker) Is the lack of income while applying. It means someone has to support you. My best friend supported me for 6yrs while I was applying. Sold some books online to help make ends meet as I am the one with 3 children not him! He is my saviour and too many people do not have one. He should be reimbursed by the State.
I did at least receive state medical and food for myself and the kids. His mother gave me a car to use.
It makes you feel like half a person when you arent "right" and your body is fighting you. I would have ended up homeless. And thankfully I didnt.

Cheers
Sandy
You rock speaking for the poor. I'm in a better situation than before but I never forgot our extreme poverty.

[Maraya1969]

61. FYI for people in this situation. I think your local children and families branch

will give some amount of money a few times if you can prove you need it - I am not positive but it wouldn't hurt to check if you are in that situation. Call you local government and ask what you can get. There is some help that people don't get because they don't know it is there.

Also contact local churches. They sometimes help or know where to get help.

[femrap]

13. I'm glad these funds are

available to you. I'm sorry you have to go through such bureaucratic checks so often. But most of all I'm sorry your pain. Hopefully, some new medical treatment will come along so to ease your pain.

Good luck to you.

[bobbolink]

14. The funds are not enough to survive, and there is currently a purge in process.

Just like in the Raygun era, thousands of people will be cut off, likely resulting in many suicides.

Yet, it is not an issue.

[Lone_Star_Dem]

15. Thank you for reminding us of the human side of SSI

I believe the vast majority of DUers understand how our social safety net is supposed to work and why we have it. Yet we all still need moments like this, where someone shares their personal experience, to keep us focused on what we're fighting for. I appreciate you sharing your personal SSI benefits reality.

[Mnemosyne]

16. When I finally became too disabled to work, it was 6.5 weeks from application to first check. I

worked at many crap jobs and never made very much, so could not get SSD. I have a friend that it took 5 weeks to get her first check after applying. These are anomalies though, and most cases do take several years and a lawyer.

It is so very difficult to survive on so little. I wish idiot critics could walk in our shoes. :hug:

[bobbolink]

21. I'd like to know how you did that. There are DUers here who have been waiting for years, and are

falling off the edge into homelessness.

I'm glad for you, but ..... that isn't the norm by any means, and people are suffering and dying.

[Mnemosyne]

41. I had been working homeless living in my car , off and on, for 30 years.

I had extensive records that went back to age 12. I was 41 when I finally had to apply in 199'. Besides the medical records, I simply told them what hell my life had been and how it was becoming worse.

My heart aches deeply for everyone that goes through what I have. I was not bragging, I was stunned when it went through so quickly. I suffered before I applied and after, should I be sorry and have guilt for not having to wait years? I would not have made it.

[bobbolink]

49. Nobody asked you to be sorry or to have guilt. NOBODY. I asked a question, because I know so

many here are suffering so badly. Some will NOT make it.

Can't we at least support each other when it gets this bad, rather than turn a question into a point of contention?

If you must do that because of my name, then I guess the best thing is to just both put each other on ignore, so that we don't end up in these kinds of pointless exchanges. The OP doesn't deserve this.

I hope it goes well for you, and I would assume you hope the same for me.

So long for now.

[Mnemosyne]

53. What does your name have to do with it, Bobbie? I know how much suffering there is here, and

everywhere. I felt you implied I am not worthy because so many others are suffering now. Sorry if I misinterpreted your comments. Ever have a bad day and took something wrong?

Put me on ignore, no problem. I don't do ignore.

[bobbolink]

54. Yes, it was misinterpreted and it wasn't the first time.

I care very deeply about suffering people, and I know that comes through my words. And, yes, many here choose to attack when they see my name. Its old.

Carry on. This is about suffering and hurting, and endangered people.

[kickysnana]

35. 5 years for my sister. n/t

[Mnemosyne]

42. Disgusting that they allow such suffering. n/t

[RobinA]

58. My Experience

in this area, I'm a social worker who, among other things, helps people apply, is that the speed of getting benefits is related to how your disability looks on paper and what kind of records exist. A friends husband has Stage 4 colon cancer. Disability came through immediately because stage 4 cancer is obviously a problem and they had been to a million doctors, all with CT, MRI and lab results.

Other stuff is more ambiguous and has to be fought harder. I work with people who are severely mentally ill and it normally doesn't take long given these people's diagnoses and history of many, many hospitalizations.

Then there's the people who COULD work, but at a limited number of jobs. These are the people who tend to get screwed, because the people who decide these things don't live in the real world. Some examiner will look at the records and tell the person, "Well, it looks to me like you could work at a job for half a day two days a week at which you could sit down the whole time and take a 15 minute break each hour. Therefore, you can work, no disablity." No such job exists, but that doesn't matter. The person could, theoretically work at such a job, so he's out of luck.

[ooglymoogly]

17. kr. Wiki on SSI

The legislation creating the program was a result of President Nixon's effort to reform the nation's welfare programs. At that time, each state had similar programs under the Aid to the Blind, Aid to the Permanently and Totally Disabled, and Aid to the Elderly. The Nixon Administration thought these programs should be federalized and run by the Social Security Administration. Thus, SSI was created to eliminate the differences between the states including different disability standards and income and resources requirements, which many perceived as irrational or unfair. President Richard Nixon signed the Social Security Amendments of 1972 on October 30, 1972 which created the SSI Program. The SSI program officially began operations in January 1974 by federalizing states' programs, designating the Social Security Administration (SSA) to administer the SSI program. SSA was selected because it had been administering a nationwide disability program under the Social Security Disability Insurance Benefits (DIB) program since 1956 under the Old Age, Survivors, and Disability Insurance (OASDI) programs associated with FICA payroll taxes.

[bobbolink]

38. Thank you for that. As bizarre as it is, Nixon was the last Liberal.

:(

[Enthusiast]

44. Exactly.

They made the U.S. into a right wing nation by taking control of the media. They key is recovering a fair media. The internet isn't enough.

[colorado_ufo]

60. I t;hink it was in Julius Caesar:

"The evil men do lives after them; the good is oft interred with their bones.

[bobbolink]

20. "Housing wage data from the National Low Income Housing Coalition shows that people with

disabilities receiving SSI benefits needed to triple their income to be able to afford a decent one-bedroom unit."

Is it acceptable to have homeless disabled people because of this?

Is this OK?

[Liberal_in_LA]

22. Thanks for sharing details of your life. I had no idea how SSI worked

[bobbolink]

24. Most "progressives" DON'T know any of this.

http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=439&topic_id=1179355&mesg_id=1179863

[Liberal_in_LA]

25. You are probably right

[bobbolink]

27. Its not a sexy issue.

So the suffering continues.

[blueamy66]

47. I'm with ya

Who can live on that amount of money every month?

What happens to those that don't have family to live with?

I am ashamed of my country.

[Mosaic]

50. Four Times More Is Needed

To even have as much as a worker who has finished high school. People talk about 2 classes, we have at least three. We must make this a Progressive issue.

[bobbolink]

55. I posted earlier on this thread a quote from a national organization, stating that NOWHERE in this

country can people living on SSI afford to rent an apartment.

NOWHERE.

So, why isn't this a "progressive" issue?

WHY?

[grilled onions]

23. I AM On Disability

Friends are amazed at the continual forms I have to fill out to prove I am still disabled. Naturally they want to know all about other money sources which for me is zero but it's the idiotic "what do you do in a typical day" kind of a questions that rankles. What is a typical day for a person with major health issues? Do they think we spend all that money:sarcasm: traveling around the world when most of us use canes,walkers,wheel chairs? Our social life(outside of a computer) is either very close friends who understand or home care/wound care or trips to clinics,doctors offices or even the ER. Many seem to think we sleep until noon which is hardly the case when you can barely sleep at night,must take meds at certain hours and often have home care in at random intervals. I cannot even sleep in a bed(it's a recliner for me) so I can barely imagine even taking one night trips with my transport chair because I would have to worry about sitting,sleeping and even getting there. I must use a small pick up because my back cannot get me out of a regular car. Those who say that you and me and so many others are having the time of our life by living the life of luxury need only be in our shoes for 24 hours to see how very wrong they are. Hang in there!!!

[bobbolink]

26. Thank you for talking about that. I wish you had a huge megaphone!

"What do you do in a typical day?"

So many of us don't HAVE a typical day... good days and bad days. If the questioners had ANY clue, they would already know that.

Yet, even on DU we have those who want to rag on someone who "is defrauding the system", which is what leads to the suffering of the rest of us.

It is a horrendous issue all the way around, and I have lost any idea of how to improve it.

[philly_bob]

28. If you were designing system, would you have SS and SSI under same agency/name?

[Akoto]

33. If you are asking me, well, that's a difficult question.

I am not familiar with all of the bureaucracy involved. On the one hand, people think SSI stands for Social Security Insurance (as stated above -- it does not), which leads them to believe recipients are living off of the SS account. No doubt, this is the root of a lot of misguided hatred. SSI is not funded by the Social Security tax.

On the other hand, SSI is commonly associated with SSD because if you can't qualify for the latter, you are still applying for the former. If they were not connected, people without knowledge of an alternative to SSD might never seek the help.

[Forkboy]

30. Thank you for this post.

Many people have no idea what it's like to live on SSI, and think it's just a carefree existence living off the government teat (or that we shouldn't buy soda with it, something I learned right here on DU lol). Not to downplay the seriously stressful conditions that almost all people deal with in the workplace, but not working can be, and often is, just as stressful. There's little in the way of carefree fun living this way.

Thanks again for posting this, and I'm happy to give it a K&R.

[hfojvt]

34. oh sure, an anecdote. Gotta link?

Just kidding, although I think it is worth pointing out that if somebody tells an anecdote that challenges our beliefs, people will jump in and call them a liar, say it didn't really happen, that it couldn't happen this way, and that anecdotes don't really prove anything.

But if an anecdote goes the other way, if it supports our beliefs, then it is hailed as rock solid proof.

Unfortunately, those anecdotes are probably gonna be derided by people with other beliefs, just like we deride anecdotes that do not match our own beliefs.

But still, thanks for sharing some of your story. That's gotta suck, being disabled and bed-ridden at just 26. On the plus side though, the internet gives you much more in entertainment than you'd have had even twenty years ago.

Also, on a side note. As a former bookstore owner, who got stuck with half his inventory when he went out of business, I can send you a box of books, if you give me some idea what you'd like. PM me a list of authors and genres and an address and I'll PM back a selection you can choose from. You'll be doing me a favor in clearing out some of my excess storage.

[truedelphi]

36. Can I point out one small window of help?

I won't spend much time lamenting how little SSI is, or how difficult it can be to get it, as others have done so.

But often a person can get state aid similar to SSI while waiting out the two years. It usually is even more of a pittance than SSI - but at least it is something.

For instance, here in California, you might get 60 to 80 a week from state disability. I understand that that is almost nothing, but if you are struggling, every dollar helps. It doesn't take a great deal to get it either - often one or two letters from doctors indicating that you are too sick to work, and you are on it.

[Forkboy]

40. I recieved Emergency Assistance, which was $306/month.

I lived off of that for two years. SSI pays retroactively from the time you applied, but the state takes all the money they gave you back from that initial lump sum. Out of an initial $9,000 I ended up with about $500 after paying back the emergency aid and the lawyer I needed after being denied for SSI twice. This was in Mass, and I don't know if it's the same in every state.

Like you say, a pittance, and a tough way to survive, but better than nothing. It kept me alive long enough to get the SSI.

[axollot]

48. Not everyone qualifies. I didnt. Once approved they owed me 20g

in back pay tho. Which helped A LOT.

Cheers
Sandy

[truedelphi]

52. Glad to hear that you got the BACK PAY.

So have a small :toast: on me!

[unkachuck]

37. K&R....hang in there, Akoto....n/t

[Odin2005]

39. I'm on SSI

I get $300/month to help make ends meet. I have very little. Internet access and books are my sole luxuries.

[axollot]

45. I'm 40 on the 31st. Was disabled 10yrs ago; 6yrs ago applied

and have had it for a year now. Not going through what you are but due to me having "almost" 20yrs on you as I sat in front of the judge, explained my education background I also explained the various jobs I have tried from active, to sitting, to easy. Fatigue is my big deal along with chronic pain.

Now after a year of being on SSDI I found out it may be MS!! The judge ruled for me within 10min tho of me explaining that not only do I have a degree, I used it for an active job etc. My lawyer was an arsehole - the judge even turned to him and said "That is the kind of testimony I want to hear - not this cant do anything, cant move etc but cannot sustain it and tried it all" Then the panel said review in 2yrs. Lawyer said I would not have to go in, just my doc papers would have to be sent to them.

And since I'm deteriorating rather than improving - well, think I am stuck with it.
But hey - if you ever need a room mate -let me know I'm broke too and only receive slightly more because of kids and working overseas for over a decade prior.

Cheers
Sandy

[jwirr]

51. I am another SSI recipient. Only I also get $255 from Social Security.

That is because it is not just the disabled who get SSI. My Social Security is very low because I did not work the right kind of jobs long enough to qualify for more. SSI also supplements the elderly who are below a certain amount of Social Security. I and my family would not have survived over the years without this program - first my disabled daughter received it and now me.


Note to the OP: You might be able to be covered under your fathers Social Security once he retires. My daughter now gets her Social Security under her father's number.

[earcandle]

56. Rhank you for sharing your story.

[Joey Liberal]

57. Thanks for that post, Akoto

I'm ashamed of my country for the way it treats people with disabilities. We go to war in other countries to help "liberate" them, yet helping our own people in need is a problem.

[End Of The Road]

59. Hey Akoto -- what do you like to read?

I've got a shitload of books in my garage getting ready to go to the used book dealer. Most of it's crap (stuff that I read to go to sleep - e.g., Nelson DeMille, urban fantasy) but there are a few decent things in there, too. Lemme know if you'd like a few.

[Akoto]

63. I appreciate the offer ...

As humiliating as it is to admit my reading habits, I am a complete nerd. I particularly like fantasy, Forgotten Realms setting, books published in that line by TSR or Wizards of the Coast. I used to play tabletop games (D&D, etc) and really like collecting the rulebooks.

[End Of The Road]

64. well I checked through the boxes

I thought there might be a few along those lines, since hubby is a very eclectic reader, but alas, I don't have anything even close. Sorry.

[madamesilverspurs]

62. Eight years.

That's how long it took for me. In that time my condition deteriorated to the point that I was bedbound for a full year. The state/county interim 'help' was its own bizarro world - "You need to provide proof of no income", and they refused to tell me what kind of proof they were looking for. And they got especially pissy when I explained that being bedbound meant that I couldn't run to their office every other week to sign another meaningless piece of paper; what a circus it was to certify someone to be able to pick up and deliver paperwork. The county did their best to ensure that I was aware of how 'inconvenient' it was for them, and they did not take it kindly when I offered to trade inconveniences . . .

From Social Security, the indifference seemed to be part of their plan. Can't tell you how many times I was threatened with termination of my application if I didn't deliver what they were demanding, even though I had no way of getting my hands on what they wanted. My lawyer was fantastic, I met him exactly once when I crawled (literally) into a friend's back seat to go to the federal courthouse to meet the man and sign the papers; after that, we spoke daily on the telephone. I was so very thankful for him, while simultaneously wondering what the hell kind of country requires its citizens to have a lawyer in order to see a doctor.

When the decision finally came through, it went from SSI to SSDI to just plain old Social Security in the space of a week, they effectively retired me at the age of 44; lawyer said they did it because regular SS would be cheaper than either of the other two.

The year of being bedbound was factored into the three-year period used to determine monthly payments; all three years together didn't have enough work to equal a full year worked when I was healthy, so the checks have never been anything close to huge. And I keep waiting to encounter the splendor I'm accused of living in.


-

[Forkboy]

65. ...

:kick:

[sarcasmo]

66. Kick.