Monday, September 13, 2010

So Social Security Disability is a secret welfare program now? Really???

I don't usually write two posts within 24 hours. But today I came across an article. An infuriating article. An article perpetuating stigma against people who live with mental illnesses, and disabled people at large - particularly those who are permanently disabled and live on Social Security Disability Benefits. This article, America's Hidden Welfare Program: Social Security's Disability Insurance is Expensive, Destructive, and Out of Control was written by James Ledbetter and published on Slate.com, a place where I wouldn't normally expect to find articles furthering discrimination of entire demographic groups. But there it was.

On Facebook, about 45 comments were written on the comments section of the link to the article, last time I checked earlier today, and 98% of those comments were people talking about how they are on disability, or they know people who are on disability, and they are disgusted with this insulting piece of writing. I want to say something about Social Security Disability benefits in case anyone reading this is not aware.

First, you can't get them unless you have records from doctors showing a definite permanent disability and a doctor who will state that you are permanently disabled. Even if you have that proof, 9 times out of 10, you'll be denied benefits when you apply. The application process is lengthy and more involved than getting a mortgage on a house. After you appeal, you'll often be denied again. Many people get a lawyer who takes on their case, because they don't know how else to fight the system for the methods of basic survival that they severely need. The lawyer, if they win the case, takes some of the back pay of benefits. Even with a lawyer, you may have to further appeal. I know one person who fought the system for five years, with a lawyer, until she finally got the benefits. And, incidentally, I think "benefits" when referring to this system makes it sound more like something being given to people for nothing, which is not what it is at all.

Once you're on SSDI (Social Security Disability Benefits), you really get to live in the lap of luxury. You get an income usually below $800 a month (a number based on the dozens of people I've known on disability). Mine is below $700 a month and it used to be much less.

This is so fun! You get to live far below the poverty line and everyone knows how much enjoyment a person can get from that! Also, you usually can't work at all, so you get to lose your feeling of fulfillment in life and your status as a member of the working class. This brings dicrimination by people who think you're worthless if you don't have a job, which is always fun to deal with! Yay! When someone asks you what you "do" for a living, you don't usually want to say "I am on disability", considering the ignorance of the general population regarding disability and considering there plethora of lovely articles like the one I'm describing in the media.

Also, in order to EVER get SSDI benefits, a person has to have worked and paid into the system, and the amount of benefits you get is based on how much you worked. I got sick at age 20. I didn't get to work much to pay into the system. But because the amount of my check is so low that it won't pay for my rent and food, much less all my other bills, I have no choice but to work. And I want to work. But I cannot work full time. I work part time and that is how I survive - SSDI and my part time job.

I don't talk to a lot of people about being on SSDI, because people who know nothing about it are apt to think what James Ledbetter things. All of us on disability are "milking" the system. In case you haven't followed this blog for a long time, I should mention a few things here. Before I applied for disability benefits, I had been sick and in so many emergency rooms and doctors offices that I had piled up thousands of dollars in medical bills that I could not pay. When I was without insurance and couldn't see a doctor for my physical illnesses or my psychiatric state (which was not yet correctly diagnosed), my life was a nightmare. Before I applied for disability benefits, I was homeless, living in a homeless shelter for several months and my car for a few weeks. I then went to live with a friend of a friend, and only at that point, after being debilitated by sickness, drowning in poverty, and having my life turn into a nightmare, only THEN did I even apply for disability benefits.

I applied, and I got the thousands of pages of medical records sent to Social Security, and I got the medical exam done by the SSA doctor, and I filled out all those forms, and I won. I did not have to appeal. But at least once, every 2-3 years, I have to reapply basically, updating all of my information and proving that I am still deserving of my $700 a month. Since I have to work part time, but can't work full time due to all my symptoms, I have to be careful that I don't make too much money at my part time job, because if you make over $900 a month, you get kicked off the SSDI program and lose your "benefits" (the money you need to survive) as well as Medicare, which provides the medical care THAT YOU NEED to be able to work part time.

If I was to try to go off disability right now, that would mean that I would have to find a full time job that I'm mentally and physically capable of doing, and that would pay me enough to be able to survive, and that would provide immediate health insurance from day 1, which would not exclude me for any pre-existing conditions whatsoever. That's not going to happen any time soon.

If Social Security determines for any reason that you are no longer eligible for "benefits", because you worked or because you don't seem sick enough anymore, you lose the benefits. And then, if you're disabled and can't work, it's too bad for you.

The Social Security Disability program didn't even EXIST until a few decades ago, and it is a wonder that a person with a disability could financially survive before this program existed. One way that they did so, if they had a psychiatric disability, was to live in a state hospital. In the 1980's when Ronald Reagan's administration closed many of those state hospitals (the deinstitutionalization period), many of those people became homeless, had no where to turn, and needed disability benefits. Which is what explains one of the claims made in Ledbetter's article - that more people are on disability now than ever before, for mental health reasons.

Ledbetter further claims that "everyone will have a mental illness at some point in their lives", which is obviously not true. Everyone may have mental or emotional crises such as situational depression in their lives, but the majority of people in this country do not suffer from a mental illness. Many do, but not most, and certainly not all. Only about 2% of us have Schizophrenia in any of its forms. So to diminish the severity of mental illnesses by claiming they are as common as a common cold is insulting and ridiculous.

I urge you to read this article for yourself. You can come to your own conclusions. If, like me, you find it outlandish, you may wish to write to the author, or to Slate.com, to tell them so. Or leave a message below the article, as many people have already.

Those of us who have a mental illness, or who care about a person who has such an illness, really do need to speak out, and speak out loudly when we hear such ignorance and misinformation as the claims in this article. We all know we don't want that tiny disability amount each month to go on a vacation to Tahiti and eat Bon Bon's and drink champagne. We need that money to SURVIVE.

And when someone says that people should not have what they need to survive from a government into which they have paid taxes, well that is a pretty dangerous thing to say. It makes me think of the Nazi regime, and how Adolf Hitler had many people with disability exterminated from the earth because they were thought to be worthless. We are not worthless, and we are not a bunch of welfare queens. We are people who need help to get by because of illnesses which are totally out of our control, illnesses we didn't ask for and we don't want to have. I wish that James Ledbetter could walk in my shoes for a few days.

17 comments:

Dreatori Alexis said...
This comment has been removed by a blog administrator.
MisYahd said...

I would have to find a full time job that I'm mentally and physically capable of doing, and that would pay me enough to be able to survive.
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Eric Raiber said...

You brightened my day. Thank you

Eric Raiber said...

You brightened my day. Thank you

Eric Raiber said...

You brightened my day. Thank you

jycloseouts said...

Thank You for continuing to educate people about the many faceted aspects of surviving with a mental illness.
SSI and SSDI are notoriously difficult to get and the joke is, if youre already struggling to just function on a day to day basis, the emotional prescence of mind required to fight for benefits and the jumping through hoops required to get them is unfortunately too much for some of us to acheive.
The stigma of being mentally disabled is enough to deter most of us from ever seeking help in the first place, so we struggle sometimes for decades going from job to job, trying to survive and fooling everyone, including ourselves about our level of "wellness".. When we hit rock bottom ( for me becoming homeless at 45 with 2 children) sometimes we are forced into the social services system and finally receive the direction and help we need.
I am still fighting for my ssi benefits and know that even if they are granted, I will be struggling to survive with them. I'm fairly certain that none of us suffering with debilitating illness feels like we are "milking the system"..lol.. We are just trying to survive.

Ashley Smith said...

Hi Jen,

As an individual also in recovery from schizophrenia and receiving SSI, I agree that the "benefits" are used to survive. Survival is difficult living wth a mental health diagnosis for the many reasons you acknowledged. Also becasue the symptoms can be so bad that an individual living with a diagnosis cannot function in the workplace, full-time.

Truth be told I did not want to be on disability, and still don't. I think my rejective attitude of applying for "benefits" was because
I was in some form of denial that my life was changing as a result of illness, which I did not want to accept.

I want to get off of "benefits" with with a good paying job with health insurance to go to, however, this goal is difficult for me to fulfill, but not impossible.

Also, I appreciate learning a little bit more on mental health related history- the Reagan Administration "deinstitutionalization" and Adolf Hitler's philosophy that individuals living with mental illness are worthless.

Great blog entry on an intimate subject but needed discussion.

I will survive said...

Awesome article! Well written. I didn't get my master's degree in mental health and work for 30 years just to end up on food stamps and SSI. I've tried very hard to work, but, as I grow older, it's getting harder and harder for me to function at ALL in a work environment. With the 8 medications I'm on, remembering things short term, well, that's just in the cards anymore. Bless you for writing this. I feel less alone.

Dave said...

My hats off to you, you are well versed and aware of horrendous situation people who live on SSDI/SSI deal with. Yes I did work 30 years also and now Im 49. Ive been a US Marine, and then a USNR and received honorable discharges from both services. Ive also owned 2 homes and completed a 4 year electrical apprenticeship. Ive been through it all and have worked since I was in 11th grade when my dad jumped off a bridge. I took pride in my work. In 05 I became ill with meningitis and almost died. I lost everything, 140,000 hospital bill and I would up broke. Now I am living off 1075.00 a month is a ghetto in Durham NC. I live amongst those who scrounge for a living, many on ssdi or some type of program. There is something wrong with the system where people can be drawn to such depths of hell. SSDI is a surefire way of finding yourself lost. You will also forget who or where you are asthe stigma attatched proves to identify you. I eat top ramen. I sleep alot. i take meds. There is only one thing I could of asked for six years after my hospitalization. That would of been to never save my life....

Stephani Hanson said...

1 GMGreat article. I am not real familiar with mental illnesses and have fought being labeled as such. Mental issues I guess were just a stigma growing up. I do havesome depression and believe I have PTSD but have so far refused to add thoze to my list of problems.i started working at 20, I spent years climbing that ckrporate ladder and when my back and legs finally gave out and my painxcould not be controlled i finally reached out for help. I was granted my ssdi at age 50 and should have gone after it probably 10 years earlier. I commandeda,nice salary of 80K and myhusband brought in aboht 50k. I DID PAY INTO LTD and have to fight each year to make eatna write the checks. So i have myssdi andmy LTD. Last month my husband age 61 lost his job. My parents who have only ss to liveon arenow living sith me. So imagine a house with 4 adults trying to live on these means. I think that of all the programs out there, most monitored. I get anxious every year when i have to prove again that I cant work. There should be a button that lo push that says leave that one alone. Oh, my medication co pays are$600 a month and I'm in the GAP an d its only May. Would much prefere to be healthy and working.

Christine X. said...

My name is Christine X. I have a blog called "My Uncomfortable Mind" (uncomfortablemind.blogspot.com), about my journey through life battling Schizoaffective Disorder & PTSD. I found your blog about SSDI, to be sad but true. It is shameful that people who suffer from disabilities must also suffer from extreme poverty. Thank you for enlightening people further.

SoDarkPink said...

Nearly eight years ago I started recieving SSI. At the time I was 17 and it was more of my mother's choice than my own. I had no concept at the time of the limitations, soul crushing poverty, and stigma that would come with this much needed aid. I had never lived on my own, but less than a year later I was kicked out and forced to figure out how to survive in the real world. While my friends from highschool were applying for college, learning to drive, and working...I had no other choice than to live outside of the norms my much envied peers experienced. The first two years on my own I lived in a group home for mentally ill youth. This alone drove nearly everyone away, including my family. I was orphaned by fear, humiliation, and indifference. To make matters worse, the medication I was on just made me even more unstable and sick. When I was able, I went cold turkey off my medication and induced a chemically withdrawn psychosis. Some of my relatives intervined and took care of me. I noticed once the withdraws went away that I felt surprisingly sane. I managed to get a studio and live without medication when I was 21. I was re-anaylzed. I was told that I had depression and post traumatic stress disorder and that I was misdiagnosed due to the fact that I was analyzed while on high amounts of adderall and during a year of gross sleep deprivation. It was such a liberating moment, but nonetheless extremely bitter sweet. Part of my identity for the last four years had been shattered. As a result I felt rather lost. Regardless, those two illnesses still way their toll on me... I'm valiantly trying to figure out how I can finish college, keep my health in check, and safely become a member of the work force again. Many of family members are insensitive and perpetuate the stigma I experience on a regular basis. Even some of my friends do. I feel so alone in this battle and discriminated against. In conclusion, thank you so much for being brave enough to speak about such a sensitive and taboo subject. I usually just tell everyone that I'm a writer when they asked about my income because the pain is just too much to bear.

ConnConnection said...

I am a legal aid attorney living with bipolar disorder. Just found your blog today (it's FANTASTIC). The points you made in this post are as valid today as when you wrote it almost two years ago.

Keep this blog going - you are a great and powerful voice!

ConnConnection said...

I am a legal aid attorney living with bipolar disorder. I just found your blog today - it's fantastic!

This post is as valid today (sadly) as it was when you wrote it.

Keep up the great work - you are a remarkable voice.

Friends of Taylor F. Taranto said...

Social Security is an entitlement program, a form of welfare.

I was recently diagnosed with SAD, and I'm about to enroll in disability. I don't know about not becoming employed, I haven't been employed in a long while, economy the way it is. But as I looked into it more, the chances of having this diagnosis are likely for me and my heritage. I will likely look at this as unplugging from the matrix. Now I won't be forced to work among people who think we're too weird to be in social situations.

I just want people to know that I'm personally not lazy. I choose to work everyday. My ideal profession is on its way and I get to be the owner and operator of it. I've recently discovered I'm quite capable mentally when drugged properly but social situations feel like hell for me, I can literally become sick to my stomach and racked with fear and paranoia. It is not healthy for me and I must build my own world, here on the outside or escape in darker ways, which inevitably leads to crime and I'm not aware I'm even doing it.

Also yes I do believe bad people are using SS as a secret tool for political enabling and paying off criminal behaviors. I've seen it with my own person.

Friends of Taylor F. Taranto said...

Social Security is an entitlement program, a form of welfare.

I was recently diagnosed with SAD, and I'm about to enroll in disability. I don't know about not becoming employed, I haven't been employed in a long while, economy the way it is. But as I looked into it more, the chances of having this diagnosis are likely for me and my heritage. I will likely look at this as unplugging from the matrix. Now I won't be forced to work among people who think we're too weird to be in social situations.

I just want people to know that I'm personally not lazy. I choose to work everyday. My ideal profession is on its way and I get to be the owner and operator of it. I've recently discovered I'm quite capable mentally when drugged properly but social situations feel like hell for me, I can literally become sick to my stomach and racked with fear and paranoia. It is not healthy for me and I must build my own world, here on the outside or escape in darker ways, which inevitably leads to crime and I'm not aware I'm even doing it.

Also yes I do believe bad people are using SS as a secret tool for political enabling and paying off criminal behaviors. I've seen it with my own person.

Friends of Taylor F. Taranto said...

Social Security is an entitlement program, a form of welfare.

I was recently diagnosed with SAD, and I'm about to enroll in disability. I don't know about not becoming employed, I haven't been employed in a long while, economy the way it is. But as I looked into it more, the chances of having this diagnosis are likely for me and my heritage. I will likely look at this as unplugging from the matrix. Now I won't be forced to work among people who think we're too weird to be in social situations.

I just want people to know that I'm personally not lazy. I choose to work everyday. My ideal profession is on its way and I get to be the owner and operator of it. I've recently discovered I'm quite capable mentally when drugged properly but social situations feel like hell for me, I can literally become sick to my stomach and racked with fear and paranoia. It is not healthy for me and I must build my own world, here on the outside or escape in darker ways, which inevitably leads to crime and I'm not aware I'm even doing it.

Also yes I do believe bad people are using SS as a secret tool for political enabling and paying off criminal behaviors. I've seen it with my own person.

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