Chronic Pain Lifestyle

From a Reader: YOU MUST READ!!!!!

Reader Zed posted this comment today, 8/9/07. 

     It's just too easy to sit back and collect disability checks complaining about our incomes dangerously close to our expenses when we read a story like the one below.  I'm in pain, I'm afraid of losing the quality of my life, then Zed disrupts the morning coffee with a story of one of his friends who also suffers BUT will lose everything!

     Philosopher, John Rawls, wrote the most important three words, which are also the title of his most highly regarded tomes.  JUSTICE IS FAIRNESS.  Read on, don't spill a drop, and answer this:  WHERE IS THE JUSTICE IN THIS WOMAN'S LIFE?

     Write back, post a comment if you've any conscience.  More than that, write and ask what you can do to help.  Something, anything?  Yes, I know, we all have our own burdens; we can all ease some of our own if lighten these loads by giving something away; DO SOMETHING!!

     Although I hope it will not be the motivating factor in my giving I wonder who's next? Me? or is it you?

From Zed:

And to continue this discussion...

a close female friend of my for nearly 20 years... who's going to be turning 47 toward the end of this month... just received a notice from Social Security, that "she's no longer disabled", and "that her benefits are going to be cut off", since "she's able to return to work"!!!

Now... for TWENTY YEARS (since 1986)... she's received Social Security benefits checks (SSI & SSDI), due to her history of chronic depression (she has obsessive compulsive disorder and she hoards), decreased cognitive skills (due to closed head trauma from a car accident),  scoliosis, disc herniation with bone spurs (the same car accident), fibromyalgia, and incontinence due to fibroid in her bladder and uterus...

now, all of a sudden... some worker at Social Security sends her a notice, that "they've reviewed her original claim", and "all of her medical records (dating back 20 years to 1986) supporting her claim", and "now have decided that SHE'S NO LONGER DISABLED!!!

to add INSULT TO INJURY... on the bottom of her "decision" notice... they wrote: "we know that you have no skills, but you SHOULD BE ABLE TO FIND SOME TYPE OF WORK THAT YOU CAN DO... that will PAY YOU ENOUGH MONEY to live on and support yourself!!!

she lives in California... one of the MOST EXPENSIVE PLACES in the U S to live...

also... they "checked in to her banking records"... without notifying her... (part of Bush's Homeland Security Legislation!!!) since she's living "beyond her means"... by playing "credit card rodeo" with 7 credit cards... they "think that she's recovered from her disabilities"!!!

she's filing an appeal... but, she's been told... that her "appeal" could take 10 years to go to a hearing!!!

in the mean time... she's going to end up homeless and without funds to support herself!!!

so... there's "more evidence"... on how Bush and his policies... are "trying to save Medicare", by "kicking people off of Medicare's disabled list"... and, "into the streets"!!!

     Whatever our political feelings, liberal or conservative, there is no room in either camp for injustice.  I eagerly await your response.  God bless us all, Colin 

Your Rights as a Disabled American are Under Fire

        I feel so strongly about the miasma of our rights that I feel it would be a disservice to you if I didn't make you aware of the items listed below.  What you do with the information below is your business; I encourage you to act as your conscience dictates. 

     I strongly believe that we should not take our rights for granted.  To do nothing is not wrong, but it is a descision.

     Please read:

     ADA RESTORATION ACTION CENTER
Powered By ADAWatch.org

After years of being weakened in the courts, Congress
is coming to the rescue of the Americans with
Disabilities Act (ADA), the bipartisan civil rights
protections signed into law in 1990.

Majority Leader Steny Hoyer (D-MD) and Representative
James Sensenbrenner (R-WI) introduced the ADA
Restoration Act of 2007 on July 26, the seventeenth
anniversary of the ADA. Senator Tom Harkin (D-IA) and
Senator Arlen Specter (R-PA) have introduced
the bill in the Senate.

This vital legislation will restate and clarify the
intent of Congress in order to keep the promise of
the ADA. Please take action now to encourage members
of Congress to sign-on and pass this legislation which
was drafted with the support of a broad coalition of
disability organizations. 

Contact Congress:

Copy this link to tell your representatives in
Congress to support the ADA Restoration Act.

http://www.democracyinaction.org/dia/organizationsORG/adawatch/campaign.jsp?campaign_KEY=6722&t=roadtofreedom.dwt

Sign the Petition:

Copy this link to show your support for passage of the
ADA Restoration Act. We will distribute the petitions
to Congress and the media.

http://www.roadtofreedom.org/petition

Tell Your Story:

Copy this link to tell your story about disability
discrimination, how the ADA has helped you or how the
promise of the ADA is still unfulfilled. We will share
these testimonials with Congress and the media.

http://www.roadtofreedom.org/story

Get On the Bus:

Follow the Road To Freedom: Keeping the Promise of the
ADA, our year-long, cross-country bus tour promoting
the restoration of the ADA. Freedom bus Check out the
tour schedule, read the blog and view photos of our
journey so far covering more than 14,000 miles, 30
states and 45 bus stop events.

Go to: http://www.roadtofreedom.org

Background:

Seventeen years ago, Congress passed the Americans
with Disabilities Act (ADA) with overwhelming
bipartisan support.

However, in recent years, a number of Supreme Court
decisions have significantly reduced the protections
available to people with disabilities in employment
settings.

Courts are quick to side with businesses and
employers, deciding against people with disabilities
who challenge employment discrimination 97% of the
time, often before the person has even had a chance to
show that the employer treated them unfairly.

Indeed, courts have created an absurd Catch-22 by
allowing employers to say a person is "too disabled"
to do the job but "not "diabled enough" to be
protected by the ADA.

People with conditions like epilepsy, diabetes, HIV,
cancer, hearing loss, and mental illness that manage
their disabilities with medication, prosthetics,
hearing aids, etc. -- or "mitigating measures" -- are
viewed as "too functional to have a disability and
are denied the ADA protection from employment
discrimination.

People denied a job or fired because an employer
mistakenly believes they cannot perform the job or
because the employer does not want people with
disabilities in the workplace are also denied the
ADA's protection from employment discrimination.

     Credit for the content above is not mine although I wish I could claim it.  Reader Zed passed this on to me and I've printed it for you.  The above clearly states what you can do to protect yourself.  God bless us all, Colin

A Reader Speaks! Rally for Your Rights!

     Don't get mad, get madder!

     I wrote a post entitled, "How Can You Blog, and Still Call Yourself Disabled?"  If you read the post, http://jackbauerdeclassified.typepad.com/chronic_pain_lifestyle/2007/07/how-can-you-blo.html , you know that there ARE Insurers and other agencies that might rephrase my title into the phrase, If you can blog, you couldn't call yourself disabled.  And those same entities may take a jaundiced view of your "sin", disability.

     A loyal reader posted the following:

     To speak out against this disheartening view on what is considered "disability", come to Respect-ABILITY Conference 2007! (Sponsored by: Disability Rights Center of California, formerly the Western Center on Disability Rights)

     Important - SAVE THE DATE! Respect-ABILITY Conference 2007 October 12 & 13, 2007 LAX Marriot Hotel 5855 West Century Bl, Los Angeles, CA 90045

     Join hundreds of persons with disabilities and disability rights advocates throughout California, as we come together, to discuss, share, and learn about issues that impact and are important to the disability community. Learn about emerging issues, strategies, and advocacy tools that can help you protect your rights and make positive changes in your community.

     For more info on how to join the Respect-ABILITY Coalition or the Respect-ABILITY Conference 2007, contact: John Longoria (213) 736-8305, (213) 736-8310 (TEXT) or, [email protected].

     Thanks, Zed, for keeping us on our toes!

     For other posts on this page, hit the category,  http://jackbauerdeclassified.typepad.com/chronic_pain_lifestyle/politics_of_disability/index.html  for other articles concerning the politics of disability.

"...It could be worse."

    I did it again.  Missed the mortgage payment on my parent's home.  Years back, my parents were neck deep in the soup; their landlord was going to throw them out because he wanted to sell the place.  My four siblings and I chipped in and bought it in a trust to whom my parents pay rent.  The trust doesn't make money and was created only so that we could buy it and assure my parents that they'd never be homeless.  I'm the eldest son, so I'm the trustee responsible for making the mortgage payment.

     This arrangement was fine until I became disabled and along with pain and the other junk that comes with fibrosis and arachnoiditis, my memory became spotty.  Sometimes I boot the payment wide right.

     Today I made the late payment by phone thanking the bank's representative for their understanding.  I had to explain my sob story-fights with my disability carriers, time lags with social security...blah, blah, blah.  Chronic pain...blah, blah, blah.

     The rep was very patient and sympathetic telling me that the bank would work with me in many was I wasn't aware of.  I thanked her and said I'd get in touch if I needed more help. I ended by saying, "I don't know how people do it who haven't got this crummy disability."

     She paused then said, "They do what I did.  I survived cancer, but we're bankrupt.  We were homeless...

     ...don't give up. It could be worse."

Words Won't do Much for These People:

     Did You happen to read this comment:

          I AM TRYING TO FIND MEDICAL COVERAGE THAT IS AFFAORDABLE. I CANNOT PAY THE COBRA FEE. I AM 61, A
NURSE, 31YEARS. WORKED FULL TIME THROUGH 9/06. I CAN'T FIND HELP. I FALL THROUGH THE CRACKS. I AM TOO OLD, TOO YOUNG, ETC. ETC.

     Or how about this one:

          I can relate to all these stories. My Daughter says that I've always been so independent that maybe this is Gods' way of teaching me to rely on others. I live on 940.00 a month disability and get 12.00 in food stamps. I have no insurance, so all my DR's visit's have to be cash. I have always worked, raised three kids without help from the Government. I take five medications a day ad those to are cash. I feel as though the Government is much more interested in helping people that have never worked and never will than those of us that have. God Bless you all.

     There isn't a word I can write that will make a damn bit of difference to these people, and the many others like them. 

     Action, not words!  First step: drop a line. God bless, Colin

Help! The Silence is Deafening

       Before I begin thrashing around, let me clarify that when I write about the "Community of Disabled" or the"COD's" I include myself.

     The COD stratum of modern society is so self-pitying, that it might as well wear "kick me" signs as a precondition of stepping or wheeling themselves from their homes. 

     I recently read a forum posting written by COD member who has a serious problem.  This person was videotaped by a disability carrier, an insurer had hired a private investigator to follow this member of COD, video-taping said individual carrying a child around a supermarket, and performing various other "little" chores.  The writer continued explaining that the check, the disability benefit, would be jeopardized, particularly because of the insurance carrier interviewing the subject, in this person's home, and confronting the COD with the evidence.

DO YOU THINK THIS IS FAIR?

DO YOU THINK THIS IS A VIOLATION OF ONE'S RIGHT TO PRIVACY?

DOES IT STRIKE YOU THAT THIS "PRACTICE", CASTS TOO BROAD A NET TO UNFAIRLY ENSNARE A POTENTIAL MALINGERER?

WOULDN'T A REAL CHEAT KNOW  THAT INSURERS DO THESE THINGS?

IF SO, DO YOU BELIEVE THAT A REAL FAKER WOULD KNOW TO PROTECT HIMSELF OR HERSELF?

DO YOU KNOW A FAKE?

     This rotten practice probably results in far more legitimately disabled people being heaved from the rolls than it does catching phonies.  Have you ever been advised that stress and anxiety are beneficial for your condition?

• Draw the shades!
• Turn out the lights!

     Answer this one question:  WHY DO YOU TOLERATE THIS TRAMPLING OF YOUR RIGHTS? 

     I don't know many people who receive a check from an insurance company who aren't a little afraid of losing their benefits.  I also don't know many disability recipients who have the financial resources to fight back effectively.

     Did you know that if you had the dough, you could've purchased a private policy, prior to your becoming disabled that specifically promised that you'd never have to endure the indignity of potentially being hounded by a private investigator with a video camera.  That is if you had had the money, and if your policy was large enough.  It's a socio-economic thing; better benefits for the wealthy.  The same is true of health care.

     In this case, it's the middle and working class that suffers.  Those segments of the spectrum are the target.  If you're ready this, it probably means you.

     I'm going to take up the banner, because it's just not fair and it certainly calls into question if your rights, your inalienable rights are being violated.

     If I hear from you, I'll know that you want to know how to protect yourself.

     If I hear from you, I'll ask you to pitch in.  We need legal protection; we need representation and none of that's going to happen sitting behind closed drapes.

     I'm shocked at the apathy of us COD's, particularly when I asked if you believed you had a right to recovery.  Apparently, few among this readership think so.

     Question #2:  Do you believe that trampling your civil rights as a means to cutting or removing your paid-for benefits is fair?

     Just comment yes or no; drop an email. 

     A tale of woe, after the fact is too little, too late.  Take a stand.  God bless, Colin

Do You Have a Right to Recovery?

       Do you believe that Americans have a "Right to Recovery"?

     I believe that that no one speaks for the rights of Americans who are disabled, and trapped in a life of meaningless, empty disability. 

     I believe that many "disabled" Americans truly want to work, yet feel trapped by a maze of legalistic, contract driven policies that preclude their even attempting to re-enter the workforce.

     I believe that the language of corporate benefits, while well intended, rule-driven disability contracts, and a desperate need to provide a measure of financial stability for our families are a "legion of doom" for the truly disabled who want to work.

     I believe that fear of penury, an unintended consequence of the hidebound disability carriers in their war against fakers, has created a class of dependent Americans.

    The hobgoblins of recovery are:

• byzantine, myriad insurance contracts;
• a complete and total inability of these same carriers to explain these contracts to the beneficiaries thereof;
• a total failure of Human Resource departments to perform the function of representing the interests of itself as a corporation to the carriers it hires;
• the inability and unwillingness of human resources departments of said corporations to represent the interests of its employees who want to work, to the insurance carriers with whom it has entered into a contractual relationship.

     I have asked my own company to explain my benefits, through HR, to me.  They, after more than a year's effort,  still cannot do this without involving the insurance carriers on conference calls with me.  These insurance representatives simply read the language of the policy to me over the phone.  In answer to the question, am I allowed to try to earn money under conditions that I can medically tolerate,I am often answered, "that is a case by case scenario."  Or, "you may risk your benefits in part or in whole if you become gainfully employable".

     To the question, "In my case, what would make me "gainfully" employable?"",  the answer is, "It depends on the circumstances."  The circumstances are also "case by case".

     A Gordian knot, an insoluble paradox makes up disability benefits.  The easiest answer is don't rock the boat, or simply, stay disabled.  This leaves me unhappy, costs the insurance company money, unless it can figure a way to eliminate me from the roll of the disabled, and deprives my firm of whatever work product I might be able to do in a 2-3 hour workday.

     If I could work on a pay for project basis, without risking the financial benefit my family needs, with protection of my original benefit if I physically couldn't do this work, I'd try it in a flash.

     Instead, the maze that is the pathway between basic questions and basic answers, the benefit itself, which I paid for, is a disincentive to attempting to become productive.

     Every disabled American with whom I've spoken, wants to be productive.  Few will ever take that chance and do you blame them?

     Disability contracts don't seem to allow for the possibility that a disabled person, who can't walk or sit without excruciating pain, still has a brain that works.

     We have no advocate.  So our experience and intelligence languishes in dormancy.

     It's not right.  Give us a fair shot.  A plan that allowed the insurance company to recapture "disabled earnings" on an after-tax basis, and protected the disability award (less earnings), a frozen benefit, indexed to the CPI, allows everyone to benefit.

     Many private policies provide for this already.  Most corporate plans don't.  Law should protect all.