Yes, I Still Have Parkinson’s

“You ultimately judge the civility of a society not by how it treats the rich, the powerful, the protected and the highly esteemed, but by how it treats the poor, the disfavored and the disadvantaged.” Bryan Stevenson

I have often said that having a chronic illness is equivalent to having a full-time job. There are the physical issues, of course. We are all faced with our own personal challenges, but when you also have a disease, disability or condition, there are the extra factors that you need to deal with. I have young-onset Parkinson’s disease, so I have tremor, balance problems, sleep difficulties, extreme fatigue, problems with motivation and depression, among other struggles. I have come to accept that these are things I will always have to deal with. And it can be lonely. People may try to empathize, but they can’t truly understand. Until you have been dealt a life altering illness, until it is personal, as much as you may want to, you can’t. I think it’s built into us, a survival mechanism. Imagine feeling the pain of everyone around you every day it would be overwhelming, even debilitating.

In addition to the physical issues that come with my illness, there are what I call my “administrative” challenges — things like obtaining and keeping health care insurance, finding ways to pay for the high costs of my medications, living on a limited income. When I finally had to admit that my disease had progressed to the point that I was no longer able to do the work I had been doing for the previous twenty-five years, it was time for me to enter the bureaucratic labyrinth that is Social Security Disability Insurance (SSDI). I was truly sick with a debilitating illness and could not work, but that doesn’t mean approval by the Social Security Administration (SSA)was a sure thing. Fortunately, I was able to prove that I was no longer capable of doing the work I had been doing for so long, and I achieved the extremely difficult accomplishment of being approved for SSDI on my first attempt. There is a whole industry built on the SSDI appeals and reapplication process. And while I am not saying that fraud does not exist, I challenge those who think there are large numbers of healthy people living a life of luxury paid for by their fraudulently obtained monthly SSDI distributions. I was able to do this because I am intelligent, articulate and know how to maneuver through systems not designed to be easy or intuitive; because I know how to advocate for my best interests; because I grew up with the benefits of being a White, middle-class, well-educated, born in the USA, English-speaking woman; because I had (at that point in time) insurance that allowed me access to medical professionals who understood the language the SSA wants to hear. Even with all these factors in my favor, it was still an arduous process and I wondered how those folks who didn’t have the advantages I did, managed it.

My approval was granted in 2010. A few weeks ago, I received a letter from the SSA stating that my disability claim was under a “continuing disability review.” The SSA may conduct these reviews every three to five years to determine if the recipient still fits the definition of “disabled,” i.e., is still unable to work. I have been on SSDI for eleven years, but this was the first review of my disability claim. I was surprised to get this notice, as there has been no cure for Parkinson’s disease, I have had it for over twenty years and it is degenerative, and there have been no major advances in treatment that would improve my condition enough that I would be able to return to work. In addition, I have “off times” with my medications, even with the high dosages that I take just to be able to function. I am also five years away from what the SSA currently considers normal retirement age, and I have not held a traditional job in fifteen years. As a legal aid attorney, whom I spoke with, stated, I am effectively unemployable. And yet, the SSA decided it was a good time to review my claim. When I applied for my initial request, the SSA deemed my doctor’s report as sufficient, but with this review, they required me to see one of the agency’s doctors. I was concerned whether the doctor was a neurologist or just a general practitioner, and if he or she was in particular familiar with Parkinson’s disease. I contacted the agent assigned to my review, not an easy task, she never answered her phone and did not have her voicemail set up, so I was never able to leave her a message. When I finally did speak with her, I said that asking someone who has a disease that has no known cure and that is degenerative, to “prove” that they are still disabled struck me not only as arbitrary and unnecessary, but also demeaning and cruel. After doing some research, I discovered that there are a whole lot of reviews happening.

David A. Weaver, Ph.D., an economist and retired federal employee who has authored several studies on the Social Security program, explains it this way his op-ed piece of June 16, 2021 in The Hill. “Increasingly, Congress has directed funding away from service delivery to disability reviews that remove individuals from the rolls based on SSA’s assessment of medical improvement. This trend came about because of a peculiar ‘Inside the Beltway’ dynamic where SSA was desperate for administrative funds and Congress saw reviews as a politically acceptable way to reduce the disability rolls. Using the argument that disability reviews, on net, saved the government money, Congress exempted their administrative costs from budget caps. Last year, the appropriators earmarked $1.6 billion of SSA’s administrative budget for disability and other reviews.”

Even more disturbing is his statement that “SSA plans to increase the number of full medical disability reviews next year by 36 percent and increase the number of Supplemental Security Income (SSI) redeterminations by 23 percent.”

SSI has some overlap with SSDI, and it is possible to qualify for both, but they are different programs. Whereas SSDI is based on one’s revenue history-what you have paid in through payroll taxes, SSI is designed for the lowest earners, so the fact that the SSA is intentionally attempting to remove those who receive SSI payments from the roles is especially troubling. In fact, Dr. Weaver points out, the fact that the agency “plans to spend $1.35 billion in administrative funding on reviews of SSI recipients, while only spending $96 million in SSI outreach and application assistance, represent[s] a misallocation of resources given the agency’s core mission, [and] while budget caps end with this fiscal year, disability reviews have now become ingrained in SSA’s work culture, even at the expense of fulfilling its core mission as a benefits paying agency that keeps millions of elderly and disabled Americans out of poverty.”

As I mentioned in my opening paragraph, it is difficult to truly understand the struggles faced by someone who has a disability, illness, or condition. This is a challenge for us as individuals, but it also applies to those whose job it is to help those who are in need. We want the professionals we interface with to be understanding of the difficulties we are dealing with, but we need them to have a degree of detachment to accomplish the task of helping us when we are at our most vulnerable. I understand that like any other organization, the SSA must face the reality of running a huge bureaucratic agency, of being good stewards of the funds they oversee and to carry the tension of providing a service to their constituents while also dealing with the practical matter of needing to “keep the lights on.” But, when the way they choose to remain solvent is at odds with their core mission of helping people get the resources they need, the resulting judgement of the civility of the society in which this takes place is not likely to be favorable.

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