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3 Financial Challenges of Being Chronically Ill and Disabled That Politicians Always Forget

It’s only two months until the November elections, and if you’re like many people, you’re already exhausted. Yep, me too. However, even though I’m weary and wary of politics, I’ve been paying close attention to what candidates and current elected officials are saying about me… or rather, not saying.

Hi, senators, representatives, and other candidates. I’ve got chronic illnesses. Please don’t ignore me.

Most politicians are more than willing to bombard me with “won’t you please donate” emails. In fact, until I unsubscribed from all of them, my inbox was clogged every day with donation pleas from politicians, political parties and PACs who felt the need to write several times a day. If, however, one writes to them with concerns about chronic illness, poverty and disability that have not been addressed by their policy positions? Crickets. Not a peep in response.

Even the candidates who have been admirable in their receptiveness to some disability-related issues could expand their efforts. I’m not even talking about the costs of medical care, medications and insurance, although that three-headed hydra needs attention. I’m talking about the fact that the severity of many chronic illnesses, and the complete financial devastation they can cause, are completely ignored.

Chronically ill and disabled individuals are voters and taxpayers (yes, even if they’re not working, chances are they’re paying some sort of tax… property taxes, sales tax, income tax on private pensions, you name it) too. Here are three issues for our current public officials — and those who would like to be elected — to consider.

1. Shorten Social Security Disability Insurance application wait times.

There’s already been a lot said about the fate of Social Security in the future, and some candidates, such as Hillary Clinton, have explicitly expressed their desire to protect and strengthen the Social Security Administration (SSA). I haven’t heard as much said about the fact that many who desperately need help from Social Security can’t get it now. And lest anyone think that disability is a handout, it’s not. It’s insurance, employees pay into it with every paycheck, and benefit amounts are directly tied to contributions.

Employees pay into Social Security with the expectation that it will be there if they need it — it is, after all, insurance — but it’s not. It can take a year or longer for a Social Security Disability Insurance (SSDI) application to be processed, and about 25 percent are awarded benefits on their initial claim, according to 2013 SSA report. Some individuals who are rejected at first are approved later in the appeals process (approximately 40 percent of all applicants ultimately receive benefits), but the fight can take years. In some cases, people die before they finish running this gauntlet.

A hearing with an administrative law judge is an important step in the appeals chain. By the SSA’s own records, as of the fiscal year ending in July 2016, out of 164 offices in the entire country, only one had an average wait of less than a year for the hearing to be processed. In most areas the processing time averages between 500 and 700 days. Most offices have thousands of pending cases.

Many sick and disabled people have little or no income while they’re waiting, because despite what the Social Security Administration might think, they really are too ill to do “Substantial Gainful Activity.” Even if they have a safety net, it’s usually not intended to last for years, so eventually their savings dry up, they get behind on their bills, they incur massive amounts of debt, and they may lose their belongings, including their vehicles and homes. Some move in with family — and for those with abusive or emotionally unsupportive families, this can be soul-destroying. For others it isn’t an option at all. One of the lawyers with whom I spoke told me, “In (my city) there are thousands of homeless people waiting on Social Security appeals. SSA doesn’t give a sh*t.” With no help on the horizon, some may consider suicide when they are left destitute by the long wait — I know I have.

Despite all of this, Congress continues to cut the Social Security Administration’s budget. According to The Washington Post, 60 Social Security offices have been closed since 2010. More cuts are possible.

Nobody should wait a year for an initial SSDI decision or two years for a hearing. Shortening decision and appeal times means that more people will get their benefits sooner rather than later and will not be forced into desperate financial situations and homelessness.

Along with this, perhaps SSA needs to reform the way cases are analyzed. The SSA spends years and lots of money fighting to deny benefits to people who should have received them all along. Some people who are initially turned down for disability are given absolutely ridiculous reasons for their denials. In October 2014, The Washington Post reported that the book SSA uses to determine possible jobs for applicants has not been updated since 1991, still includes positions such as “telegram messenger” and “phrenologist,” and doesn’t take geographic location or the actual existence of said careers into account.

In assessing disability claims, there doesn’t seem to be much understanding of good and bad days or the fluctuating nature of chronic illness. There have also been some personal accounts online of individuals who have been turned down for private disability insurance because they were seen interacting in social settings, and many lawyers handling SSDI cases also warn their clients to be mindful about what they post on social media.

Nobody should get turned down for Social Security because they went to a birthday party, took a trip, or posted a photo of themselves on social media where they smiled. Being social one day doesn’t mean that a person can work 40 hours a week, 50 weeks a year, and disability isn’t a sentence for house arrest or solitary confinement.

2. Increase access to affordable housing.

Those with chronic illness and other disabilities, who are often trying to survive on SSDI and/or part-time work and have huge medical expenses, could really benefit from expanded access to affordable housing and more assistance to keep their homes, whether they are rented or owned.

3. Dedicate more funding for more chronic illnesses.

Perusing the National Health Institute’s categorical spending is disheartening. Over the past few years, NIH spent exponentially more to study underage drinking than ALS, Lyme, fibromyalgia, chronic fatigue syndrome, endometriosis, scleroderma, psoriasis and many other chronic illnesses. Some, like Ehlers-Danlos Syndrome, primary immunodeficiency and porphyria, aren’t even mentioned. While there are large funding allotments for rare and autoimmune diseases, given the sheer number of them, it seems likely that money is spread thin and many research projects aren’t funded.

What happens when there isn’t enough research money dedicated to chronic illnesses? We don’t have good treatment options. We can’t find doctors who can competently handle our diseases. We have shorter life spans with more complications, more hospital visits and poorer quality of life. We require caregivers and lose our ability to live independently.

We’re far less likely to ever re-enter the workforce if our illnesses can’t be treated. That’s really the bottom line. I was able to work with asthma and polycystic ovary syndrome for a long time. Technically, both conditions are incurable, but they’re treatable. The same vast knowledge base and established treatment protocols do not exist for several other conditions I have, so I remain ill.

The crux of the matter: many chronically ill and disabled taxpayers and voters are being overlooked, despite being in dire straits. The establishment of disability coalitions may help change this in the future. However, many of us need help now. We’re falling through the cracks, we’re not getting up again, and we desperately need lawmakers to listen and take action.

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