Struggling through what might be the last year of her life, Laura DeLong Smith heard some good news in late May.
A counselor from the American Cancer Society told her she qualified for a Social Security program that gives monthly disability checks to people with terminal cancer. She was elated.
The counselor coached her on what to say so that processors at the federal agency would steer her to the Compassionate Allowances Program. Smith made the call, sat for a lengthy phone interview and went down to the Social Security office to sign a medical release form.
Then it got ugly.
She received an eight-page form at her Virginia Beach home asking question after question that seemed strange for someone with a terminal illness: Was she left- or right-handed? What were her hobbies? Did she have pets? Did she make her own meals?
The form asked about her shopping habits, her household chores. Did she walk, ride a bike, drive or ride in a car or do all of them? It asked how her illness affected her ability to dress, bathe, care for her hair and use the toilet. It asked how she got along with police, bosses, landlords and other authority figures.
The "function report" also wanted her to describe in a narrative the details of her day "from the time you wake up until going to bed."
Smith, who tries to maintain a cheery disposition despite her illness, was outraged.
"My hobbies? My hobby is trying not to throw up after chemo," she said. "What does it matter what I eat every day? I'm dying."
Her two-year battle with ovarian cancer became terminal earlier this year. Chemotherapy took away all her hair, and the accompanying nausea stole her appetite. She spends a lot of her day lying on her couch, exhausted.
Worst of all, she's had to make plans for someone else to raise her 5-year-old son.
She's grappled with how much to tell him about her illness and how to prepare him for what is coming next. She is not sure she'll see her 49th birthday in October.
Before her illness, Smith had been a clinical medical assistant for 25 years and had some experience with childhood cancer patients.
She thought the Social Security form was sent to her by mistake. She called the local office - twice - for an explanation.
She was told that she had to fill it out or she wouldn't get the money. Everyone has to do it, she was told.
Smith complied, but was blunt in her descriptions of her life.
She wrote that she can't describe what she cooks. "I don't prepare food because I don't eat."
When asked if she "noticed any unusual behavior or fears" Smith responded, "I'm pretty sure all my fears are normal for someone dying of cancer."
To a question about which hand she favors, she wrote, "Does it help you to know this?"
Smith said she doesn't want anyone's pity - she just hopes that going public will provoke Social Security officials to change their rules.
"I hope that the next person who comes along with terminal cancer doesn't have to put up with this humiliating experience," she said.
Smith's story isn't unique, said Sean Powell, Smith's patient advocate at the cancer society.
Powell said he coaches clients to make clear when they call Social Security that theirs are "TERI" cases - terminal illnesses that require special handling.
But clients often end up talking to someone "who doesn't understand the process at all," he said. "The joke with us who work with Social Security is that you call them 10 times with the same exact question and you get 10 different answers.... It's very frustrating."
Mae Novak, a Social Security Administration spokeswoman who looked into Smith's case, said the function report is used to determine eligibility for many programs, not just those serving the terminally ill.
She described it as a "shotgun approach" to collecting information about prospective clients, used when Social Security officials haven't received medical evidence that they qualify for a benefit. The questions about daily activities help determine what level of disability payments a person should receive.
If Social Security already has a terminally ill client's medical information, the client shouldn't have to fill out the form.
But Novak said it's possible that in Smith's case, different people at the agency were doing similar tasks without each other's knowledge. The agency has a mandate to process terminally ill patients' claims rapidly, she said.
For example, one official may have automatically mailed the function report form to Smith without knowing that another already had the medical information needed to make the decision, she said.
Novak said it's important to remember that Smith was able to get her application processed quickly and will start getting payments this month.
"The agency is pleased at the speed at which she was being serviced."
Bill Bartel, (757) 446-2398, bill.bartel@pilotonline.com
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Forms and cancer treatment
I had breast cancer, thankfully not terminal (so far, praise God!). Everyone fills out forms and something six pages long doesn't seem too onerous. I am glad this gal had a sense of humor about her answers--obviously, some questions were extraneous to her case.
I am not sure this warranted an article. It would have been better to find someone to help her with these tasks rather than condemn the processes that require them.
My husband is not good with medical details, even his own or our son's, so I made all the phone calls to get insurance straightened out for all of us the entire year I was being treated. Sometimes ya just gotta do what ya gotta do.
Government Health Care
Be careful what you ask for you might just get it.
Just going to get worst
If you voted for this new young "Yes we can" president then don't complain about the government involvement with your health care. I'm sorry I mean the up coming Obama care, if think it's bad now, just watch the number of people who needs health care, get health care, just not the proper health care. And don't forget that your health benefits will be taxed once the ink is on the paper.
Outrageous!! The Social
Outrageous!! The Social Security Office needs better accountability than this. Maybe they need to cut the chaff staffwise and hire some competant people!! There are probably at least a few out there right now that could use a good job!!
right on
Stayce, you took the words right out of my mouth!
ever heard this before??
"We're from the Government, we're here to help"
Reading this makes me so sad. This poor lady has the reality of knowing what none of us know, her life expectency. Not to mention the constant pain and suffering from treatments that will inevitably do very little good to improve her quality of life. And now here comes the govt to make her life even more miserable!! It took somebody alot of effort to come up with such a ridiculous process to recieve funds. Let me win the mega millions tonight and she won't have to worry about filling out that paperwork!!! Think of the good that could be done with around $40 million cash. I certainly have.
Been There..Done That
Good article. My wife died last year after a 3 year battle with lung cancer. Went thru the same drill. Filled out the forms from the SSA within 6 months of being diagnosed with this terminal disease. She did receive the benifits in a timely fashion and although I too thought the forms questions were somewhat silly, I guess we were luckly and our case manager at the SSA worked with us well. (Portsmouth Office) The differnance here is that while my wife was sick and had other things on her mind to contend with (is radiation/chemo treatments) I was able to concentrate on the paper work drill. Having someone to help the cancer victim is very helpful. If this woman is doing this all on her own, my heart cries out for her and her son. I can't imagine my wife having to do this alone. I was blessed to be able to be there for her time of need.
You have got to be kidding
As a family member of a patient possibly facing terminal cancer in the near future, it is nice to have the heads up as to the further indignity coming our way.
As the prior post pointed out, I'm sure this is in response to rebuff increasingly sophisticated efforts to defraud the system. The disgust I have for this element of society is at times overwhelming. All the effort and energy to defraud society alludes to some sort of intelligence that could be redirected positively, however, the path of least resistance with the greatest reward is the one chosen.
You have my utmost admiration for coming forward, I pray this article will bring change to patients facing another obstacle on top of everything.
if the govt takes over our
if the govt takes over our health care, we'll all be filling out these forms. They'll know everything about us. Then they will decide if we live or die.
Gov't Health Plans for Death of the Elderly
It's true, the gov't will decide who lives and dies with its health care plan implemented. The gov't plans on not providing health care to the dying elderly, letting them die. They're already doing such a thing in hospices already. People are so naive entrusting their lives to the Federal government especially.
One half dozen
Or the other ... right now, private, for-profit insurance companies decide whether we live or die. I'd rather have a socialized medicine any day than a CEO desk-jockey deciding my fate.
No doubt these questions are out-of-line, but how about having a terminal or chronic condition - costing Anthem, et.al. too much money, and being dropped by them --- left to die? Good luck getting affordable insurance elsewhere.
Yes, let corporations decide who lives or dies.
They already have all your personal data.
A different point of view
I just read the article...and read the form in its entirety. The form is designed to assess an individual's level of function and ability to work (or potential to return to work after rehab), in order to determine eligibility for disability assistance. While this patient's terminal condition may be obvious and clear-cut, most cases are not. I, for one, am glad that the SSA is being diligent and thorough in determining eligibility for help from fellow taxpayers and trying to prevent fraud and other questionable clains. It seems they have a mechanism in place to identify these "obvious" cases and expedite processing. As a taxpayer, I would expect no less. I just wish they would be that diligent with other government assistance programs.
That's funny
It's kinda hard to return to work after you're dead, although these days some employers might expect it...
It seems they have a mechanism in place to identify these "obvious" cases and expedite processing. As a taxpayer, I would expect no less. I just wish they would be that diligent with other government assistance programs.
There IS a mechanism in place to identify the "obvious" cases-it's called common sense. Oh, I forgot, we're talking about government employees who sign an agreement with their employer not to use common sense in any decision making process if there is a more onerous, less effective and expensive, taxpayer funded alternative available.
That form
I don't think they even read that form. My husband had a stroke and I made it perfectly clear on that form that he could no longer walk, talk or use his right hand. One day I received a recorded phone message from Social Security wanting to know if he would be interested in a job processing phone orders on a computer from home. Also, he was never offered any sort of rehab and in case you don't know it, you have to be on disability for 2 YEARS before you are eligible for Medicare. Thank God for my job and employer's insurance!
This is why social Security should be privatized
Social Security benefits are not "your money," they are benefits paid from current payroll taxes taken from today's workers. Your money was given to someone else, you do not own anything, so the benefits can be meted out as the bureaucracy chooses, defining justifiable need as they see fit within the framework of the law.
If we had an equity based retirement system, in which you paid into the system and stocks and bonds were purchased in your name, you would be entitled to draw them out when it became clear you would not be able to use them for retirement because of a terminal illness, and if you did not use them up, you would be able to leave them to your children to give them a head start. Those equities would be yours to use as you see fit.
With Social Security, you have nothing to pass on but a promise that your children will be able to demand support from the generation that follows them. In the end, Social Security is no different from what Bernie Madoff will be imprisoned for doing as an individual.
Your money
They say it's not "your money" but your benefits are based on what you paid into it. It's your money.
Its a Ponzi scheme
There is no money of yours invested for your future. The money you paid in is gone, paid to current retirees.
All you have is a promise that you will be able to rob the next generation just as you have been robbed.
Sooner or later, that "next generation" will not be large enough to carry the load and someone gets left with the "Old Maid" and is out of luck, having paid too much in taxes to invest for their own retirement but not being able to get enough from current workers to get by.
All Ponzi (pyramid) schemes collapse at some point.
Government health care
will be just like this! Once you get anything from the federal government, you have to give the bureaucrats what they want. Can you imagine trying to go to the doctor? It won't be like Medicare and Medicaid now -- it will be like medicine in other socialized countries. You will have to wait, and wait, and wait, and people will die, and you will have to fill out forms that you don't want to fill out, and give your personal health information to people that should never have it. I am so sorry for this woman! What a horrible way to be treated.
Obama voters, are you getting the change you voted for?
I voted
for Obama, and so far so good, yes.
The mess with health care, the economy, the senseless war in Iraq --- all part of the "compassionate conservative" agenda of the money-grubbing, selfish, hateful right wing element of the Republican party.
What will you do when you lose your job, get a terminal illness and are dropped by your insurance company? How will you decide between buying your medicine or keeping your Evangelical and NASCAR premium package on cable television?