(no subject)

[nilchance]

My thoughts on disability rights, let me show you them.



Recent Denial Rates for Disability Applications, provided by Disability Blogger

California - In California, 55.5 percent are denied.
Texas - In Texas, 61.5 percent are denied.
Pennsylvania - In pennsylvania 55.1 percent are denied.
Wisconsin - 62.6 percent denied.
Washington - 58.9 percent denied.
Virginia - 61.6 percent denied.
Massachusetts - 54.7 percent denied.
Maryland - 66 percent denied.
Michigan- 64.1 percent denied.
Minnesota - 57.6 percent denied.
Mississippi - 72.8 percent denied.
Missouri - 66.8 percent denied.
Nevada - 50.4 percent denied.
New Jersey - 50 percent denied.
New Mexico - 59.6 percent denied.
New York - 61.9 percent denied.
North Carolina - 67.2 percent denied.
Ohio - 71.1 percent denied.
Oklahoma - 66.1 percent denied.
Oregon - 66.3 percent denied.
Arizona - 53.4 percent denied.
Arkansas - 63.2 percent denied.
Colorado - 73.7 percent denied.
Florida - In Florida, 64.9 percent are denied.
Georgia - 71.8 percent denied.
Illinois - 61.2 percent denied.
Indiana - 67.8 percent denied.
Kansas - 67.3 percent denied.
Kentucky - 67.7 percent denied.
Louisiana - 68.8 percent denied.
Tennessee - 74.3 percent denied.
Alabama - 70.6 percent denied.
Connecticut - 62.2 percent denied.
Utah - 69.8 percent denied.

These are the people who could afford to apply for disability. Who went months without income to qualify, yet scrounged up the cash to pay a lawyer. These are the people who scraped through for groceries, pills, doctors visits, wheelchairs, chemotherapy, child care.

These are the people who filled out humiliating forms that required them to state over and over again that they had nothing to contribute to society. That they couldn't work. That they were broken and needed help. These are the people who went in front of county boards to say to them, "I can't."

These are the people who went through that and were refused.

The media pushes the idea that everyone is trying to cheat the system. That people file for disability for acne and broken fingernails. And there is that minority; I work in disability services, and I've seen people try to claim services on false grounds. But in trying to get rid of the dishonest minority (which is estimated at the MOST as 5% of all cases), the government is screwing more than half of the people who apply.

I look at that and think, that could be me. That might still be me. I'm textbook fibro in my mid-20s, when most patients are diagnosed in their 40s-50s. I have chronic daily headache. I suspect that I have CFS/ME. There are times when I miss 2-3 days of work a week. I work in disability services, I'm lucky that way, but still I've had my boss request medical records and second-guess my doctors. I've had a supervisor suggest in an official context that I need therapy.

I'm one of the lucky ones. I don't have cancer. I can work. I'm not in a wheelchair yet. I have an invisible condition that was verified by a doctor. I'm not bipolar or schizophrenic. I don't pay rent. I have insurance. I don't have kids. I'm so goddamn lucky in this economy. And I could still slip. Anyone could. Being able-bodied is a temporary condition.

Confession: my mom is on disability. She has advanced MS and bipolar disorder. She was granted full service-connected status as a veteran, and disability benefits as well. She's one of the minority from Illinois who won her case. And she is goddamn miserable to be retired. She's a brilliant woman trapped in a failing body. She's running out of books to read and movies to watch. She's 54 and she feels like she's already considered dead. And the government still has watchdogs overlooking her case and those like hers, making sure that the person is still disabled, making sure that they're not cheating.

Only one presidential candidate has a public policy on disability. (Obama, for the record.) McCain's policy is 'don't get disabled.' Returning wounded veterans are being asked to return their signing bonus. The people above went to the government to ask for the disability benefits that they funded with their paychecks through years of service, through working, and the government said simply, 'fuck you, you're faking it.'

I'm afraid for our country. I'm afraid for myself.

Comments

[kuhekabir.livejournal.com]

I am debating if you want a European's opinion on this or not...so I am just saying hello but that's it...LOL...

[ysbail.livejournal.com]

I'm sorry to say that it isn't limited to your country - it's the same in the UK.

Government officials seem to be living by the law dictated by nature - survival of the fittest. And shouldn't we be better than that?

[frightened.livejournal.com]

Yeah - and it's about to get a lot worse, isn't it? I've been hanging out on a bunch of mental health blogs, and there's a lot of fear. Manic-depressives are scared they'll be assessed during a manic episode, and people are talking about how their doctor, their psychiatrist and their CPN all said they couldn't work but then some random DSS guy behind a desk decided they were fine and denied Incapacity Benefit.

I'm pretty much having a panic attack before work every day, and every time I have to talk to my evil boss. I can only work part-time, and so I don't qualify for tax credits, either. And like nilchance, I'm one of the lucky ones - I'm well enough to work, sort of. I think the deliberate fraud rate is estimated at something like 2% over here. There was a scandal about how calls to the government's Incapacity Benefit hotline were going completely unanswered, because of course disabled people have the energy to keep trying to get through. And the government's response? Penalise 'em some more! They're probably scrounging anyway!

Let's storm the Houses of Parliament. Wheelchair-users can run the bastards over. People with sticks can hit them. I'm agoraphobic; I'll hyperventilate and puke at them.

[eponin10.livejournal.com]

*nods* Oh yes.

My husband has both a minor, not life threatening, form of muscular distrophy and MS. The MS could at any time turn debilitating. It's frightening, and we are so damned lucky that where we both work, we have really, really good health benefits. Benefits that don't ask about pre-existing conditions.

It's scary enough that because he's been diagnosed with MS, if we ever want a life insurance policy for him, it would be near impossible and cost a fortune. Because MS could conceivably kill him, or disable him permanently.

We're very lucky that we have a good health system here, and that so far, his form of MS has been very quiet. From what his doctors have said, most MS patients with his form of MS have at least one symptom flare-up a year. He tends more towards one every three years. As a matter of fact, his doctors just cut back his medication because he's doing so good. [As a side note, his meds would cost us upwards of $80k a year, if we didn't have benefits. We pay $87 four times a year.]

All of this, and my husband still makes the most money between the two of us. I barely top $20k a year, and we have a house and a five year old daughter.

I'll admit to occasionally being terrified of his MS getting worse.

And wow... I just hijacked your comments. *eeps* Sorry!

[http://users.livejournal.com/amy_star_/]

I know how you feel. Dad has MS too, and he was retired before he was 50 because he could't handle the physical demands of his job any more. Luckily, his meds are helping him out (15 years after diagnosis, he's still mobile - without a cane, even - and has one flare-up every couple years) AND the Ontario government is paying a portion of the cost of the most expensive drugs. We're also lucky that we're in Canada, so he doesn't have to worry about paying for specialists or things like MRIs, and when he was diagnosed he was working for the local government doing roads so he still has decent private insurance.

[eponin10.livejournal.com]

*nods* Yeah. We get stuck paying a couple hundred dollars whenever he needs an MRI. Luckily at the moment, he doesn't need one often. And his job isn't physically demanding (he's a web designer), so we're lucky there, too.

Still, there's been talk of some of the major HMO's making a limit on long-term prescription drugs, so that if you topped it, you'd have to pay from then on. NOT liking the sound of that.

this made me think of my own worries

[temima.livejournal.com]

I really wonder how I'll manage if I lose my job. I hate it, but I hate going up to organizations and telling them "I have nothing to contribute to society". I hate people questioning my honesty. I hate moving in with my mom.

Yet, I do not have any obvious problems. In the right crowd, in the right job, I might seem quirky. However, I do not have the skills for a 'right job' and live too far away from the right crowd.

I have had people suggest I disclose what is happening, that it's been diagnosed when I was a kid and not just some "I saw this thing on the Internet about this disorder and I think I have it" (not to diss the self-diagnosed, just that people tend not to take it seriously, despite understanding about the autistic spectrum just ballooning, and adult ADD not far behind). However, I am honestly scared that I will be seen as unrepairable. Broken, well, sometimes, I am. But I want to scream "I am not useless, just not you."

[jedi-diplomat.livejournal.com]

My best friend is disabled. She has a prosthetic foot. She's lucky that she can and does work. She works but her health insurance through her company doesn't cover prosthetics (she works for a hosptial). They'll help, but it's 80/20 with the insurance paying the 20. Unfortunately, prosthetics have to be redone every year and/or if you gain or lose ten pounds and an average prosthetic costs about 10K.

Wisconsin, sadly is all sorts of fucked up, the DOT has certified her disabled, she has the plates, the Department of Education declared her disabled. But Medicare will not say she's disabled because she can work. All she wants is the backup health insurance so she doesn't have to try and find 8K every time she needs a new foot. She's too old for Shriner's to help her (which is what her family relied on when she was a child).

She says what kills her is that her abled body sister and her husband can be on medicare because they have children and even though they have health insurance available at their places of employment because it's not as good as Medicare, they can be on it because of the kids. She's, who Medicare was original designed to serve, has to bite and kick and beg to get on it.

[ladyjanelly.livejournal.com]

I'm currently trying to help the daughter-of-my-heart through all that.

She's bad dyslexic and has attention problems. The school system just warehoused her for 12 years instead of trying to teach her.

When we go to the corner store she hands the clerk a handful of change because she'd rather look like a jerk than like she's stupid.

We went to the gym and were riding the exercise bikes and she just stopped peddling. I asked what was wrong and she said she just zoned out.

With her special-ed school records we got her tested for learning disabilities. The lady told me she definitely had some but we haven't heard back from rehabilitative services yet.

All we want is for her to be able to go to school and get training for a job that's not totally dead-end. Maybe therapy or something. She's really good with graphics programs (as long as she doesn't put the text on it). I don't want to see her as a hotel maid or something for the rest of her life.

[stephanometra.livejournal.com]

Anyone who isn't angry about this isn't someone I want to be friends with.

♥

[frightened.livejournal.com]

These are the people who filled out humiliating forms that required them to state over and over again that they had nothing to contribute to society. That they couldn't work. That they were broken and needed help. These are the people who went in front of county boards to say to them, "I can't."

Thank you. That's exactly how I feel whenever I have to deal with the people who're allegedly treating me. That's how I felt when I had to drop out of university. I can't imagine how bad it would be to have to say "I can't afford food or shelter, please help." It's so good to see it written down so well.

[jeeronie.livejournal.com]

Being able-bodied is a temporary condition.

One undeniable truth that noone cares to remember.

I'm shocked at those numbers but it has come to my attention lately that the US may be great in many ways but the whole health care stuff not so much.

I know there is a whole tradition of being though and fending for yourself in the american culture but that should not mean that the state does not help the weaker ones. One thing does not invalidate the other.

I've had diabetes for many years and am beginning to feel all that it entails but in my country, fortunately, most everything I need health wise is accessible to me for free.

Which is good, since I could never afford my own medications.

I hope whoever ends up in the Presidential chair takes a serious look at these things because the most influential country in the world should influence others the good way.

[tabaqui]

I hate my government.
Bah.

[http://users.livejournal.com/amy_star_/]

Those statistics aren't shocking to me, unfortunately. And it's not just disability, it's any program like that. When I was a kid growing up, both my parents worked full time but couldn't make ends meet despite making too much to qualify for assistance. My mom had to stop working to stay at home so they could get on welfare so I could have a roof over my head and electricity. My clothes were from Goodwill and charities, food often came from the food bank, and when the school collected canned goods adn items aat Christmas, we were recipients more than once. And every couple months, we'd have to sit through horrible, demeaning interviews where we were told it was all our fault we were in that situation. In a way we were, since my dad was a cabbie and most of the money he made went to the car and the plate rentals, and Mom didn't finish highschool and had worked as a switchboard operator until she was pregnant with me... but it still remains something I feel ashamed of, to this day, almost 20 years later.
we're very lucky that both my parents haven't had a terrible experience with being disabled. Dad's been diagnosed with MS for the last 15 or so years, and has had mostly good experiences with insurance, health care, and his job, while Mom's work (retail) doesn't like dealing with her fibro/arthritis but still gives her the time off she needs and she is still on the group insurance plan.

[monica-catch22.livejournal.com]

Unfortunately I can't add more than saying I understand and sympathize. I don't have a huge disability but I have friends that have had to suffer through other people's bullshit and path-blocking for them to be able to collect the money they deserve. Shout-out to you, hon.

[1more-sickpuppy.livejournal.com]

I hate to think how much time, energy and money goes into denying people aid instead of helping. And that small dishonest percentage, however few they may be they really fuck things up for all the others.

[(Anonymous)]

I'm posting this anonymously because I'm ashamed of being on disability, even though I shouldn't be. I'm bi-polar. I was out of work, no income at all but my partners minimum wage job for two full years and some months when my therapist insisted that I apply for disability. I had never even tried because I thought no one ever got accepted (i'm in IN) and honestly I didn't want to go through the humilitaion.

The forms were pretty embarrasssing and I had to have separate form signed by my therapist, GP and a psychaitrist (which was weird cause I couldn't afford a psychiatrist, so I'd never seen one, my therapist helped me with that).

One of the problems is that absolutely nothing can be done over the phone. You must go to the Soc Sec office, take a number and wait for everything.

The man who helped me at the Soc Sec office was very nice and seemed quite optimistic that I would receive disability.

I did recieve disability, but not 'compensation'. That means that the amount of money I receive is based upon the amount I had already paid into the program while I was working, nothing else. So none of the embarrassing forms I filled out and carted around to doctors actually did any good at all. Also, they did compensate me for the previous year that I was unemployed, but when they send the check to my bank, it incresed mt bank account so that when they sent the check the next month, it was apparentky 'too much money' and ten days afyer they sent it, they sent me a letter telling me I had to return the check for that month because I had too much money. It was crazy.

I am scared to death of my disablity being taken away.

I really need a car. It was humiliating to try to apply for credit at the car dealership. People always want to know WHY you're disabled, and then they want you to explain what about being Bi-Polar makes you disabled? Aren't you on meds? It's very personal. This is why I don't like anyone knowing that I'm on disability. And then I didn't get the credit anyway.

[without-me.livejournal.com]

I... got nothin'. Except a clear reminder that I should buy myself some disability coverage (which I realize isn't what you're talking about, but isn't exactly unrelated either).

[spinfrog.livejournal.com]

Actually, even if you buy disability coverage and keep up payments, they can still decide not to pay you if you get sick. Yup, they send forms and you fill them out, and then a month or two later you get their rejection letter, telling you that they will not be providing the coverage you BOUGHT. And then, because you are still sick (um, that's why you were trying to use the disability coverage) you lose your job, and thus your medical coverage, and can no longer provide proof of medical treatment, therefore you are no longer sick and they were right to deny you the disability coverage you paid them for.. *siiigh*

[without-me.livejournal.com]

I suppose this is true. Still, it raises the chance of coverage from zero to something above zero.

[lunardreamed.livejournal.com]

Every few years I go through a major depressive episode when I have the terrifying realization that all my hard work will probably deny me benefits without paying for my medical costs. I'm looking at medical costs that will demand a salary of six figures and I'll be out benefits long before I've made half that. And why don't they want me working. I could at least pay back a percentage of what they will be paying into me. I don't want to do nothing with my life, but how can I afford to work?

[atypia.livejournal.com]

I'm incredibly lucky. I've been on Disability Support Pension for coming up to eight years. It's a bitch to get on.

The forms break my heart. It is so hard to focus on every single thing I can't do. After the first few years I learnt that I need to focus on the good things in my time. Surround myself with people who understand that I need cheering up, to focus on my abilities and not my disabilities. And it's not like the forms are the basics, either. They're so thorough and horrible. And it's not just the form I need to fill out, it's going to the doctor and having them ask me all the questions and assessing exactly what I can't do and to what extent I can't.

I love my GP. I travel to the other side of the city to see her when it's time for my forms to be filled out. She knows how to fill them out properly, with the ridiculous details. And she doesn't ask me too many questions. She knows the answers, then asks me for clarification on things if she needs to.

It's just so fucking horrible.

But I'm so lucky. I got my application turned down initially, but appealed and got it approved. There's no lawyers or anything involved here, doctors make the decisions. Our system makes SENSE.

Heaps of medications are on the PBS (pharmaceutical benefits scheme) here, so they are heavily subsided for absolutely everyone. Since I'm on a pension, I get any meds on the PBS for only $5.80 each (or something like that), even if I'm on a high dose.

Same thing with xrays, ultrasounds, blood tests - they're covered by medicare and don't cost me anything. And when I first got sick, I had so many fucking ultrasounds, xrays, blood tests and so on. There were lots of things that cost my parents a lot of money, and then there was the huge guilt for that. Them spending all their money on endoscopies and crazy doctors and acupuncturists and naturopaths and chiros and and and and and.

I fucking hate the whole thing. I HATE IT.

[atypia.livejournal.com]

Oh, and lets not dwell on my ex-boyfriend's mother, who when I was going out with him told me that she didn't want her tax dollars wasted on me, that I wasn't really sick, I was faking, I was a liar, I was a "drain on [her] resources".

I've been told I couldn't possibly be sick because my hair was too shiny.

I was told at school that I needed to put on weight (I lost 5kg when I first got sick, which put me in the anorexic bmi range). I was super skinny, looked almost green because I was so sick all the time, and missing tonnes of school. And this guy, who wasn't even my teacher, called me into his office as I was walking past to tell me that he knew I was ill and that I needed to gain some weight. Can you fucking believe that?! I felt so conspicuous, having this strange man commenting on my body when I had no control over my body as it was.

Ugh. I have throw so many people out of my life because of shit like that.

[atypia.livejournal.com]

The forms break my heart. It is so hard to focus on every single thing I can't do. After the first few years I learnt that I need to focus on the good things in my time.

I meant "learnt that I need to focus on the good things in my LIFE".

[(Anonymous)]

Thank you for this post. So many people don't understand how humiliating it is just to apply for disability. I'm one of those people going through the long appeals process. I have been fired from jobs while I was in the hospital and have both physical and mental health problems. I've also been told by several doctors that I needed to get disability because I wouldn't be able to keep a job long term. Yet our wonderful government keeps turning me down even with having doctors say I can't work.

[tobemeagain.livejournal.com]

My STD insurance just ran out, so I got to hear some of these stats from the people at LTD yesterday. Because of the backlog (around 750,000) it seems the only claims going through SS are life threatening not disabling. The lovely news that followed- I may not be eligible for LTD either. If you have been treated for the condition that caused your disability in the 3 months prior to it's onset, coverage may be declined. And that is for insurance I was paying for out of my paycheck. If I wasn't already scared and stressed, that certainly didn't help. I don't even want to contemplate the SS forms (which I can't see anymore). The flipside of all that enlivening news is that is to qualify for retraining, I need to qualify for the disability first. *yippy skippy*

[xenasoul.livejournal.com]

I can perfectly understand your anger. I live in Brazil.
That´s just one of the many civil rghts not respected around here.

This is every-day life on any third world country so I have to say this isn´t shocking to me because here I see things like this all day on the news.

It makes me fearful too.

[mona1347.livejournal.com]

Yeah. Just...yeah.

My mom finally got on disability and medicaid MONTHS after being at-will removed from her final job because she missed too much work. The fucking retarded bullshit she had to deal with, AFTER being fired and hugely demoralized for being ill, to even get benefits was unreal. Nevermind how I kind of truly believe that she could have lived if she'd been able to access the right kind of Good Doctors, and wasn't drowned in so much governmental red tape it exhausted her to think about trying to get on the transplant list.

So. Yeah.

[taralyngrady.livejournal.com]

It's depressing to know in the years since I went through the fun of getting disability it hasn't gotten any better. It took me a year of getting turned down twice then finally going in front of a judge. I couldn't even get a lawyer for that because when I went to Texas Legal the first and only question they asked was "Are you pregnant?" When the answer was no, they wouldn't represent me. During that year I lived with a ruptured disc for over 9 months and suffered nerve damage as a result of having to wait for surgery. And while it may be true that only a small percent attempt to con the way, there's far too many that get immediately accepted simply because they have kids. A friend's daughter got accepted right away simply because she was pregnant. She was totally healthy, had all her bills paid, but was just too lazy to even try and work. This continued on through 3 babies-all of which her mother takes care of. For me the only redeeming matter in the whole business was when I finally went in front of the judge. They had told me it would be some time for his ruling, but I got a letter within the week where not only was I approved but he blasted them for denying me in the first place. Small gratification for all they put a person through.

A question if I may?

[tobemeagain.livejournal.com]

If I have a question about the disability process, is it okay for me to ask? I'm not sure what to do. I'm even having a hard time with finding private insurance coverage. One thing I know is that I absolutely cannot be without insurance, no job, no car, no money is one thing, no insurance is- I don't even want to contemplate that.

Re: A question if I may?

[nilchance.livejournal.com]

You can certainly ask! I don't promise to know the answers, but I'll help direct you the best I can.

Re: A question if I may?

[tobemeagain.livejournal.com]

Sorry for the 3 month delay in the question return, but I was waiting to hear something back from Social Security. I got turned down for SSI not because I didn't qualify medically, but because I was on my mohter's bank account; that no longer applies. Social Security didn't care about that. I received a letter saying they will come back with a ruling on 9/24, they wanted to see if my condition stablized. I've already psyched myself out that I will be declined at first. But all of my docs, Long Term Disability Insurance and SSI all believe that I would win an appeal. I just am uncertain what that would entail and how to do it. I know usually a lawyer is involved, but I'm kind of at a loss. I figure I need to be prepared for my next steps. I really wish my vision would get better, but after 5 months the opthomologist said the damage to the optic nerve was permanent, and today after 9 months the neurologist agrees. Essentially I will have an optical migraine the rest of my life because the blood vessels of my right eye won't return the blood flow to my optic nerve. I can't work under those conditions, I can barely read or drive.
If you have any advice or guidance it would be greatly appreciated. Thank you.