Health Affairs, 25, no. 4 (2006): 1121-1126 doi: 10.1377/hlthaff.25.4.1121 © 2006 by Project HOPE	New Online   Obama's Success & Next Steps   3 Health Policy Options for President Obama   A Hybrid Proposal   Bipartisan Compromise

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Narrative Matters

Going Blind On Our Watch

PREFACE: Public health is where medicine and law intersect. As might be expected, there sometimes are conflicting opinions—and actions—at the nexus of the two cultures. Physician Toni Martin works both in a city health clinic and as a medical consultant in the Social Security Administration’s disability program. What saddens her are the claimants (in official Social Security parlance) with preventable diseases that aren’t prevented because the claimant couldn’t pay for treatment. What kind of nation, she wonders, allows citizens to become blind if their blindness could have been prevented? Next, former Los Angeles Times staffer Irene Wielawski details how confusion about HIPAA—and fear of its fines and jail terms—contributed to a lapse in public health vigilance during a TB scare at her daughter’s college. After some head knocking and a good deal of regulation reading, she offers up a three-point plan to make HIPAA more comprehensible and more effective.

EVERY WEDNESDAY and Thursday I drive to the Frank Hagel federal building in Richmond, California. This edifice is a faux-brick fortress in the Iron Triangle, a neighborhood infamous for crime. I park in a patrolled parking lot and show my badge to the security guard downstairs before I punch my timecard. Then I take my seat in one of dozens of cubicles on the fourth floor. There’s no window to distract me in my cubicle, which I share with a psychologist who works there on the days I’m not in. I pull up a computer file and start to read, listening to jazz on my iPod to mute the office chatter.

That’s how my routine starts two days a week, working as a regional medical consultant in the disability program for the Social Security Administration. Social Security is a federal program, but the government contracts with the states to evaluate disability claims. Our regional federal office functions as a quality assurance unit, reviewing a portion of the decisions made in Region 9 (California, Hawaii, Nevada, and Arizona).

In straightforward cases, examiners in our regional office process the cases. When they have a medical question, they call on a pool of contract doctors like me. We are psychiatrists, psychologists, orthopedic surgeons, neurologists, cardiologists, physiatrists, pediatricians, general internists, and one ophthalmologist. I can always tell when our ophthalmologist is on vacation, because even though I’m a general internist, I’m one of the doctors trained to help with vision cases. I’ve learned quite a lot since I started this work five years ago—about eyes and how lack of health insurance can lead to disability in this country.

Take a case I pulled up recently. The claimant—there are no patients here, only claimants—is a forty-six-year-old woman with diabetes, Maria Guzman. Last month one of the state offices in California approved benefits for her or, technically, "granted her an allowance," because her poor vision meets the criteria for one of the blindness disabilities listings. In Mrs. Guzman’s better eye, her best corrected visual acuity is 20/200 or less. Mrs. Guzman’s file was chosen as part of a review sample and forwarded to us; she won’t be notified about her benefit status until our office clears the case. While the regional office has the file, it is in limbo. If we agree with the state decision, Mrs. Guzman’s disability allowance will begin as of the month she had the eye exam.

Mrs. Guzman says that she had to stop working three months before the exam because of her bad vision. The state decision didn’t address this three-month timing difference, so the examiner forwarding the computer file for review asks me for my medical opinion: "Does the evidence support Mrs. Guzman’s allegation of an earlier onset of blindness?"

The only eye exam in the file that documents her recent visual acuity is the one that Social Security paid for after she filed her application. I see that Mrs. Guzman, who was a farm worker, had no health insurance, and she was not being treated for the diabetes that caused her blindness. I don’t see any comments about what Mrs. Guzman’s level of vision might have been shortly before the federally provided eye exam. Perhaps it can’t be proved that three months earlier, the vision in her better eye had deteriorated to 20/200 or less, but on the basis of what I know about the nature of diabetic eye disease, certain questions are pertinent. Was her field of vision compromised? Would she have had enough sight to avoid ordinary workplace hazards? Did other complications of her diabetes, such as neuropathy, prevent her from standing and walking six hours a day? I sigh.

Preventable Disabilities

 
BEFORE I BEGAN CONSULTING AT THE SOCIAL SECURITY Administration, the disability process was a black box to me. As a clinician, I sent records to Social Security; it made a decision. It wasn’t always clear to me whether the two were related. Now that I understand the system a bit better (although a colleague compares Social Security rules to the Talmud—no one can achieve full understanding), I see the disabled workers as the failures of the U.S. health care system, people we couldn’t or didn’t keep from becoming disabled. We can’t cure most cancers or arthritis. But many claimants, like Mrs. Guzman, are people with preventable disabilities that weren’t prevented. Far too often I see cases where people become disabled because they are unable to pay for treatment. Like the pathologist who diagnoses the cause of death at an autopsy, I can see why disability occurred after the fact, but treating it is outside my scope of practice.

In my prior clinical life, I worked in private practice and in a staff-model health maintenance organization. I can’t say that all of my diabetic patients then had their diabetes under perfect control. But together we tackled their sedentary lifestyles, their reluctance to monitor their glucose and their diet. Their insurance covered their physician visits. I urged them to have an eye exam once a year, and most of them had vision and prescription coverage. I can remember patients with vision problems, but I can’t remember anyone who had to stop working because of them. I could quote textbooks that said that diabetes is the leading cause of blindness before retirement age, but I didn’t speak from experience. Now I do.

Good blood-sugar control is the cornerstone of preventing diabetic eye disease. The Centers for Disease Control and Prevention estimates that more than a million Americans don’t know that they have diabetes because of how insidious the onset of the more common variety, type 2, can be. If a patient has a doctor, diabetes is easy to diagnose—all it takes is a blood test.

But people without health insurance are unlikely to visit a doctor until there is a problem. And once diabetes is diagnosed, uninsured patients often can’t afford regular care or medication. Regular eye-screening exams are also important for timely intervention, because there can be considerable damage to the retina before someone with diabetes notices visual symptoms. But if claimants can’t pay for one doctor, they’re not going to be able to pay for a doctor and a specialist.

Claims Procedures

Top Preventable Disabilities Claims Procedures Are You Blind In...

 
THE FEDERAL DISABILITY BENEFIT SYSTEM IS ACTUALLY two programs. One is Social Security Disability Insurance (SSDI), an insurance pool that wage earners pay into through taxes. The other is Supplemental Security Income (SSI), which is a fixed grant for people with no income and minimal assets. The disability criteria are almost exactly the same in both programs. In most states, SSI beneficiaries also automatically qualify for Medicaid, the federal-state health program for the indigent.

This is a critical point. A colleague in our office who investigates fraudulent SSI claims confided that if national health insurance existed, she would be out of a job. Certainly, being able to obtain medical care is a major benefit of SSI.

Under either program, to receive payment, people must be totally disabled, which is defined as unable to work at any job in the national economy, not just unable to perform their current or previous job. In addition, the disability must have lasted or be projected to last twelve months. (Although many blind and other disabled people can and do work, Social Security does not expect them to, and they don’t receive benefits if they earn more than a certain amount.)

On the whole, states do an admirable job of deciding disability claims under serious time pressure. Our office agrees that the decisions are reasonable almost 90 percent of the time. In reaching its decision about Mrs. Guzman, the state office also should have considered the timing question that the regional examiner put to me. If it had offered a reason why it thought that Mrs. Guzman’s vision was OK up until the month of the eye exam, I could not substitute my judgment for theirs, even if I disagreed. But it didn’t give a reason; the examiner needs my opinion.

If the examiner and I think that a state decision does not follow the rules or, as in Mrs. Guzman’s case, omits a step, after I review the file, I must write an argument—in legal terms—explaining my opinion. I had practiced medicine for twenty years when I began this work, but I trained for months before I was allowed to write up a case myself. And even then my written arguments were countersigned for a year.

That’s because the federal disability program’s criteria are a combination of law and medicine. Over time, precedents established when claimants appealed to the courts have shaped the medical guidelines into hybrid rules. The legal aspects of the rules, coupled with an emphasis on the ability to function above all other measures of disease severity, initially disorient doctors. In the case of diabetes, most clinicians would consider a claimant with uncontrolled blood glucose who is already blind in one eye to have severe disease. Yet that person might have no other symptoms and see well enough to function well in many jobs. Another claimant with diabetes who has no objective organ damage when examined or tested might complain of severe fatigue. Legally, because diabetes can cause fatigue, which can in turn affect the ability to work, we must formally assess how credible we think the allegation of fatigue is, instead of dismissing it because there is a normal exam. The first claimant, the one with uncontrolled blood glucose who is blind in one eye, might be able to hold a job, while the second claimant, the one with no organ damage but severe fatigue, might not be able to. It can feel like a mind game compared to taking care of patients. On the other hand, for doctors like me, who are of a certain age and older, this work balances the aerobic pace of clinical practice. It is luxurious to finish a cup of coffee and think about a problem.

Are You Blind In Both Eyes Yet?

Top Preventable Disabilities Claims Procedures Are You Blind In...

 
DIABETES AFFECTS BOTH EYES, BUT NOT necessarily equally. Some people apply for benefits when their vision fails in one eye, because the change bothers them, although the vision in the good eye is normal. Few jobs require excellent depth perception, which is the only functional loss. It might be that they can no longer assemble a circuit board or obtain a truck driver’s license, but they can perform most jobs in the national economy and care for their children. They are, therefore, not yet disabled, and if they had access to health care at this point they might never become disabled. But untreated diabetic retinopathy is a progressive disease that does—eventually—affect both eyes.

This sad truth bothers me when I agree with a regional decision that disability benefits should be denied to a person who has lost an eye to diabetes. When claimants don’t have their own doctor, the Social Security Administration will pay for an eye exam to determine the level of vision loss. Inevitably, when the patient still has good vision in one eye, the report from the doctor concludes: "I urged the patient to seek immediate medical attention to control the diabetes and preserve vision. Prognosis: guarded, on the basis of the ability to obtain care."

I see one of these notes in Mrs. Guzman’s file. She was denied benefits a few years ago. It was the right decision—she was not disabled—and she returned to work in the fields, where she made a living until vision failed in her other eye. In the world of federal disability law, disability—like pregnancy—is an either-or proposition. Either you are disabled or you aren’t.

The file also contains a copy of Mrs. Guzman’s driver’s license used for identification at the time of the earlier exam. She has a strong face and stares resolutely at the camera; she doesn’t know that she will be blind in a few years. If she could speak from her picture, I am sure that she would say that she can’t afford to lose her vision. She has to work, she has to cook for her family, she has to see her grandchildren. She can’t be a burden to her husband and her children. They depend on her. That’s what I would say, anyway.

As I continue reading Mrs. Guzman’s file, there are no notes from doctors between that first exam that documented blindness in one eye and the second exam, also paid for by Social Security, that documented blindness in both eyes. In some files, though, when the claimant could pay for medical care out of pocket, I find scattered treatment records in between the first and second Social Security exams. There might be a social worker’s note explaining that the person couldn’t afford the needed medication and wasn’t eligible for Medicaid. Sometimes a doctor will comment that the patient missed appointments because he or she couldn’t get time off from work. One patient kept asking her optometrist to treat her, because the retinal specialist was too expensive. She didn’t grasp that an optometrist can’t provide the laser treatment she needed. In my other job at a city clinic, I find it hard to convince the indigent patients I see to brave the lines at the county hospital for eye care. As long as they can get by, they have more urgent priorities, like food and shelter.

I am not the first person to note the connection between lack of health insurance and disability. Recently, the commissioner of Social Security proposed streamlining the disability process. One of the changes, which first appeared buried deep in the text of a July 2005 Federal Register, was a proposal to allow expedited claims—and provide health insurance—for people without insurance: "An Accelerated Benefits demonstration project would provide immediate cash and medical benefits for a two- to three-year period to applicants who are highly likely to benefit from aggressive medical care and, as a result, return to work." The proposal was recently approved, and the details are being worked out.

Such a system is a convoluted and selective way to provide health insurance, but it’s a start. It is a measure of how desperate the situation is that even in an administration that champions the wisdom of the marketplace and private-sector solutions, the commissioner felt that she must act. Ethical considerations aside, it is a waste of money to allow people to become disabled for lack of health insurance.

When I review Mrs. Guzman’s file, I am not supposed to think about her financial circumstances, only the medical facts. Sometimes an examiner marks a file "Dire Need," but even then I am supposed only to expedite the case. To be fair—and we strive for fairness—we must evaluate all cases under the same rules. Yet I am inclined to believe Mrs. Guzman when she says that she had to stop working three months before the eye exam. I know that she was blind in one eye several years ago. The current eye exam shows extensive eye disease, and there is no contrary evidence in the file. It seems likely that even if she weren’t yet declared "legally blind," she would not have been able "to avoid ordinary workplace hazards."

I detail my medical opinion in Mrs. Guzman’s file, which is that the facts support the claimant’s allegation. I don’t make a decision about a disability allowance. I only give medical advice. But I know that vocational specialists usually say that people are disabled when they can’t avoid ordinary workplace hazards. I expect that Mrs. Guzman will be judged disabled on a medical-vocational basis as of three months before the eye exam even though her condition doesn’t meet the listing until later. Once I have rendered my opinion, I don’t usually hear the outcome.

Without Social Security disability benefits, Mrs. Guzman would be destitute as well as blind. At least now she will receive a basic living allowance to replace the salary that she can no longer earn and can get health care in the future.

What puzzles me is why we as a society don’t want to provide health insurance to all of our citizens to prevent such tragedies. I want to believe that if my fellow Americans really knew what was happening, that if they looked at Mrs. Guzman’s photo, as I did, they would want to intervene early on and prevent her from going blind. What is the matter with us? Why won’t we fund basic health care benefits for everyone to prevent disability when we can?

There are forty-five million Americans without health insurance. The prevalence of diabetes is rising, and people are developing type 2 diabetes at younger ages. I feel sad when I think about all the files I have signed, and undoubtedly will sign, where disability could have been prevented. At the same time, I am proud to work for an agency that steps in with an essential safety net for the disabled and interprets its mandate creatively, seeking solutions to problems that many ignore.

As a clinician, I can’t make a diabetic patient adopt a healthy lifestyle. At Social Security, I can’t make our society look out for the uninsured. In both settings, all I can do is offer my medical opinion and cope with the consequences of other people’s choices.

Editor's Notes

 
Toni Martin (tlm{at}post.harvard.edu) is a general internist and writer in Berkeley, California. The name of the claimant in the story has been changed, as have certain details.

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