In honor of Disability Pride Month, we’ve published a whole month of content related to the intersection of disability and personal finance. Read the first article here!
More than anything else in the personal finance sphere (perhaps save taxes, which I have notoriously, uh… fucked up), the social safety net for disabled people is complicated. The idea of researching it thoroughly enough to provide useful resources for our disabled followers is daunting, to say the least. Even beginning that research has been wildly disheartening. Because it rapidly becomes clear that the social safety net for disabled people is straight-up broken.
But it’s time to rip off the band-aid. Today I’m exploring the brokenness of it all: how it currently works and whether there’s any hope of change. I hope you’ve enjoyed past episodes of Jess Gets Righteously Angry about an Injustice, because you’re about to get more of that!
… A lot more.
A brief history of the social safety net for disabled people
“I live with my disability and the unfortunate reality that health insurance is tied up with employment in this country and keeping my body as functional as possible is expensive.”
– Loyal BGR reader Rapunzel*
Before the 1930s, we literally used to lock visibly disabled people up and throw away the key. They were often viewed as shameful, “feeble-minded,” and useless and many spent their entire lives in asylums, kept deliberately hidden from society. Our spiritual ancestress in social justice reporting, Nellie Bly, went undercover in one such institution to shed light on the horrific treatment of disabled people. Her editor literally had to rescue her to free her from the torture.
So yeah: historically, we haven’t exactly done right by disabled folks!
That changed somewhat when disabled WWI veterans came home. Suddenly there was a large population of newly disabled people used to humane treatment. Not to mention a country used to honoring the service and sacrifice of veterans.
The modern disability rights movement was born and gained even more traction with WWII and FDR, our first disabled president (and the best president we’ve ever had outside of Bill Pullman (we will die on this hill)). In the 1960s, disabled people and their loved ones joined the Civil Rights Movement alongside other marginalized groups. Disability rights activists fought—and continue to fight!—tooth and nail for rights and protections. And because of the nature of their disabilities, often it is much, much harder for them to exercise their right to protest. (I dare you to look up The Capitol Crawl and not come away moved to tears.)
In 1973, the Rehabilitation Act marked the first time the civil rights of disabled people was codified in law. It mandated equal access to public services, equal opportunities in federal employment, and prohibited discrimination on the basis of physical and mental disability.
The Americans with Disabilities Act
“I have been in food service for 4 years, and retail for 2. I am 25 and steadily growing more and more physically disabled by the day.”
– Loyal BGR reader Briar Rose
It wasn’t until 1990 (YOUR HUMBLE BITCHES WERE LITERALLY THREE YEARS OLD) that we passed the Americans with Disabilities Act. This is the current law of the land… and it leaves a lot to be desired.
Sure, the ADA did a lot of good for equal access. But it did not magically cure our country of ableism. That particular -ism is still alive and well and running for the highest office in the land.
According to the Anti-Defamation League, “The ADA intended to prohibit discrimination on the basis of disability in: employment, services rendered by state and local governments, places of public accommodation, transportation, and telecommunications services.” The phrase “intended to” is doing a lot of heavy lifting there.
The ADA didn’t solve poverty in the disabled community. Nor did it change the fact that nearly half the people police kill are disabled or that almost 40% of prison inmates are disabled.
And we keep finding new and creative ways of discriminating against the disabled community. Restricting access to absentee ballots, making it nigh impossible to vote by mail, and criminalizing assisting disabled people in voting are all new ways in which disabled people are disenfranchised in the most fundamental way.
Justin Dart, Jr., who is widely considered one of the parents of the ADA, said upon its passing: “ADA is only the beginning. It is not a solution. Rather, it is an essential foundation on which solutions will be constructed.”
The ADA was life-saving triage. We still need surgery.
What the ADA covers
Fundamentally, the ADA is supposed to prohibit discrimination against disabled people during everyday activities. Under the ADA, disabled people…
- have access to public buildings and walkways;
- have access to public transportation;
- may bring service animals, medical equipment, and mobility assistance devices wherever they go;
- have equal access to employment at companies with fifteen or more employees and must receive “reasonable accommodations” at said workplaces;
- have equal access to public education;
- may not be refused service just because they are disabled;
- receive accommodations by telecommunications services and companies so that those with hearing and speech disabilities can communicate.
The ADA also prohibits “retaliation against a person who has asserted their rights under the ADA,” and states that a disabled person doesn’t have to accept accommodations or aid for their disability if they don’t want to. Lastly, it allows for disabled people to take legal action against those who violate their ADA rights.
Who the ADA protects
The catch, of course, is that the protections of the ADA only apply if you meet their definition of “disabled.” The government defines that person as someone who:
- “has a physical or mental impairment that substantially limits one or more major life activities,
- has a history or record of such an impairment (such as cancer that is in remission), or
- is perceived by others as having such an impairment (such as a person who has scars from a severe burn).”
A couple phrases there seem pretty up for interpretation. After all, who decides if something “substantially limits” you? And what are “major life activities”?
The ADA’s website assures us these aren’t meant as a “demanding standard.” And yet there are plenty of holes in this social safety net for disabled people. And those holes begin to tear open when a disabled person simply doesn’t meet the ADA’s nondemanding standard.
Disability benefits
“I am about to be in a sticky situation where I am going to lose my job due to disability that keeps me from doing my job. I can’t stand or walk for longer than a few minutes at a time, and even just sitting for 8 hours a day is awful without meds, but the only meds that work make me too dazed to work. I’m going to be making some disability but not enough to live on and my savings won’t last forever. I’m lost and don’t know what to do.”
– Loyal BGR reader Jasmine
I love the petty sass of ironic quotation marks. Disability benefits makes it sound like there’s something financially beneficial about being disabled—like there’s some kind of advantage to one’s disability. Yet disability “benefits” makes it clear that these are often just a slap in the face.
So what exactly are these coveted disability “””benefits”””?
We’ve already covered short-term and long-term disability insurance at length. But here is a rundown of the main public federal [ironic quotation marks intensify] “benefits”.
Social Security Disability Insurance (SSDI)
When you can’t earn money to support yourself because of your disability, Social Security Disability Insurance (SSDI) is the federal program the steps in to help by sending you a monthly check and giving you access to health insurance through Medicare or Medicaid. It also covers you if you are the caretaker of a disabled family member.
On first blush, that sounds fucking great. You can’t work, or you’re too busy caregiving for a disabled loved one to be able to hold a job. Of course any decent society would want to ensure you can still afford your living expenses! This is what the social safety net is for, after all!
Yet allow me to direct you back to the title of this article: The Social Safety Net for Disabled People Is Broken.
In reality, the path to reliably collecting SSDI is littered with the landmines of bureaucratic gatekeeping, underfunded and understaffed programs, ableist administrative hurdles, unrealistic requirements, and the baseline assumption that disabled people fundamentally do not deserve this humanitarian aid.
Here are just a few ways SSDI is less a “benefit” and more of a humiliation:
- You may only receive SSDI if you’re “insured.” That is, you’ve worked long enough recently enough to have paid Social Security taxes. If not… you’re shit out of luck. The implication here is that your worth as a person begins and ends at your ability to produce value under capitalism.
- While the maximum SSDI payment is $3,822, the average in 2024 is only about $1,537. According to the Bureau of Labor Statistics, the average monthly expenses for an American household is $6,080. That’s not including the extra medical expenses associated with some disabilities. The math ain’t mathing.
- You have to prove you’re disabled over and over again. You need reams of medical documentation and other information, some of which you must travel to obtain in person. You are at the mercy of doctors, lawyers, judges, insurance agents, and public servants who may or may not be trained in the specifics of your disability and, therefore, may or may not believe you.
Despite all of that, it’s still the only system we have, so… click here to apply for SSDI.
Supplemental Security Income (SSI)
Supplemental Security Income (SSI) is similar to SSDI. It includes all the same evidentiary requirements and bureaucratic nonsense. The difference is that SSI is not tied to your employment history and tax-paying history. Instead, you’re eligible if you’re disabled and just, well… poor.
- The maximum monthly SSDI payment in 2024 is $943 per eligible individual and $1415 per couple. That is not a typo.
- Beneficiaries of SSI have to abide by asset limits. As in, you have to be nice and destitute to get any sort of help! Those asset limits mean you must earn less than $1,913 per month in income, receive less than $934 per month in gifts or retirement funds, and own resources valuing no more than $2,000. And yes, your home and your vehicle count as assets. So good luck ever buying yourself an accessible house or car.
- You must report any changes to your income, resources, living situation, and disability on a monthly basis. Just in case your disability magically disappeared or every employer in the world woke up one morning and decided to create completely accessible corporate structures.
Click here to apply for SSI I guess.
ABLE accounts
FUCKING FINALLY I get to talk about something good. For those who thought the asset limits set by the SSI might be just a liiiiiiittle stingy, as of 2014 there are ABLE Accounts.
ABLE accounts (the Stephen Beck Jr. Achieving a Better Life Experience Act of 2014) are special savings accounts available to people living on SSI. They allow you to save up to $100,000 in the account without it counting as a resource against your asset limit. You can then use that money to pay for qualifying disability expenses (QDEs).
Fortunately, the definition of a QDE is pretty broad. It doesn’t limit you to expenses directly related to your disability. It’s just normal life stuff: housing expenses including rent and utilities, education and vocational training, transportation, groceries, legal fees, and healthcare. You can even use your ABLE account to pay for a smartphone.
Asset limitations are still not ideal. But ABLE accounts are at least a step in the right direction. Learn more about how to open an ABLE account here.
Nonprofits and charities
As with many of society’s ills, where the government falls short, the nonprofit sector steps up. That’s not how it should be. But until we fix the social safety net for disabled people, it’s comforting to know that at least someone is doing something.
In researching this article I came upon lots of wonderful nonprofits and charities that serve the disabled community. One in particular caught my eye: an incredible service called Help Hope Live.
It’s a nonprofit medical fundraising platform that functions a little like GoFundMe… but much better for disabled people. This is because, as their Executive Director, Kelly L. Green told me, “If you receive asset-based assistance like Medicaid or disability, fundraising with the wrong platform can actually hurt you more than it helps you. . . . Through options for fundraising like GoFundMe, funds raised can potentially be personal income or assets to you. Those funds raised may cause you to exceed an income cap, which then jeopardizes your benefits.”
You read that right: receiving charity counts as income and lowers your disability benefits!
Help Hope Live assists disabled people in navigating around the asset limitations by treating your crowdfunding as donations to their nonprofit that they can then administer directly to your medical bills. Your funds will never appear as assets, so your SSI benefits won’t be negatively affected. They were founded by a heart surgeon and his wife, a nurse, when they realized their own patients couldn’t afford life-saving care without financial help. “No one should have to face a medical crisis or the associated financial burden alone,” Green told me.
More importantly, they help with the fundraising. Anyone who’s ever posted “Donate to my crowdfunding campaign to help me pay this outrageous bill for my mobility device” to social media understands how important it is to have the expertise of genuine nonprofit fundraisers on your side.
To be clear, they aren’t paying us to say this. I’m sharing Help Hope Live because I think they’re genuinely representative of the kind of helpful nonprofit that is making the world a better place for disabled people.
The ableist bureaucratic nightmare of it all
“I am tired. I cannot work full time and care for myself. But I cannot afford to not work full time because the world sucks. I am not disabled enough to be on disability—apparently—and even if I was that is not enough to survive on.”
– Loyal BGR reader Belle
To say that the bureaucracy surrounding disability benefits is challenging to disabled people would be like saying the surface of the sun is “challenging” to human life. In both cases “nakedly hostile and callously destructive” would be more accurate.
Between 2014 and 2016, only about 33% of those who applied for SSDI and SSI actually received benefits “at any point in the process.” That last bit was suspiciously vague, so allow me to translate. It means that the 33% of applicants who succeeded almost certainly had to appeal an initial rejection. They had to go through the process of applying and appealing multiple times.
Think about how consumed with impotent rage you become when an online job application asks you to create an account, then upload your resume, then fill out a form that asks you for all the information contained in your resume, then upload a cover letter, then complete four essay questions, then fill out a form confirming you’re legally able to work in this country, then upload documents confirming you are legally able to work in this county, then supply a list of references, then—
Now multiply that feeling by thirty nine. (Why thirty-nine? Because it’s an odd number and difficult to calculate in one’s head.) You have now come close to the frustrations and despair inherent in applying for disability benefits.
Understaffed and underfunded
The process is so long, convoluted, and backlogged that some people literally die before their disability benefits are approved. Much of the reason for this debacle is chronic understaffing of the government agencies responsible for evaluating applications, exacerbated by chronic underfunding of these agencies.
Said underfunding doesn’t just lead to a lack of staff and resources. It results in a lack of funds available to distribute to disabled people. So the overwhelmed staff, doctors, and judges responsible for determining who is worthy of disability benefits are practically incentivized to turn down applications… because there’s not enough money to go around.
But don’t worry, I’m sure our nation’s precious flock of $1,700,000,000,000 F-35 combat aircrafts is doing just fine!
The Center for American Progress interviewed disabled people who had been through the American Ninja Warrior obstacle course that is the bureaucratic process of applying for disability benefits. If I may summarize their experience in one sentence, it would be: The dehumanization is the point.
These folks described how they were treated like criminals and frauds; evaluated by unqualified medical professionals; judged by people who had no idea what their disability entailed; and how they spent money they didn’t have on lawyers just to access basic ADA protections.
Unnecessary gatekeeping
Here in Dalandadafree we have a weird obsession with making sure absolutely nobody gets help they don’t deserve. This manifests as a deep cultural suspicion. Does that woman actually need Food Stamps, or is she just a welfare queen? Is that homeless person truly destitute, or are they just a no-good user who will spend your hand-outs on drugs? Is that man truly too disabled to work, or is he just lazy?
The laws surrounding disability benefits therefore involve a horrifying, ableist level of gatekeeping. We have to make absolutely certain that disabled people are living in abject poverty and torturous living conditions before generously bestowing upon them any form of disability “benefits”.
This gatekeeping implies a baseline assumption that all disabled people are lazy scammers trying to game the system until proven otherwise. Which is dehumanizing and ableist to say the least, and wildly inefficient at most. Imagine how much time, resources, and money we could save if we just—hear me out—believed disabled people.
Indulge me for a moment while I get real with you, gentle reader. This system punishes people for their disabilities. And that’s a feature, not a bug. The very fact of work requirements suggests that if you can’t work, you are of no use or value to society, and therefore, don’t deserve to survive.
Straight-up nonsense and mistakes
“I was wondering if there’s specific programs or resources for disabled (non-veteran) people to be able to buy a house? I am on SSDI, so with work income limits I make $24k/year. I have a decent credit score (710) and have $20k in SSDI backpay I can use as a down payment/closing cost, but am really held back by the income portion, especially since I cannot earn more than this without losing my disability benefits.”
– Loyal BGR reader Tiana
Asset testing
Let’s go back to SSI—the program with asset limits. Asset limits which ensure you live in abject poverty before the social safety net for disabled people will bother to reach out and help allow you to beg for help.
How does that make any sense given the astronomical costs of healthcare in this country? Where one medical bill can bankrupt an entire household, let alone the frequent and regular healthcare costs associated with living with a disability?
To quote the Center for American Progress: “Asset tests require program participants to keep their resources below a specific threshold, trapping them in poverty and creating scenarios in which a small windfall or documentation mistake can cause them to lose benefits for months.”
One filing error away from disaster
When I say the social safety net for disabled people is broken, I don’t just mean the system itself is flawed and in need of reform. I mean the actual process of securing disability benefits is literally broken.
All too often, people lose their benefits through no fault of their own. Sometimes it’s due to bureaucratic errors—literal typos and misfiled paperwork. They then must apply and appeal all over again.
Imagine one day your paycheck just stops coming. You go to your HR department to be like “wtf?” and they’re all like “our records show you don’t work here” so you have to be like “yes the fuck I do” and then they’re like “lol prove it.” And on top of all that you’ve just received a diagnosis of multiple sclerosis.
Perhaps most dehumanizing of all is that these frequent errors and the ableist obstacle course of bureaucracy indicates just how little care and respect we collectively hold for the disabled members of our community. We can do so, so much better. At the very least we can avoid high-school-intern-on-their-first-day-of-work levels of avoidable paperwork errors. Especially when it comes to the support disabled people literally rely on for survival.
Is there hope of fixing the social safety net for disabled people?
“I can’t work full time (yay disability) but don’t qualify for any assistance (until the end of the year, when I am yeeting myself at Medicaid’s feet and begging for health insurance).”
– Loyal BGR reader Mulan
There is an army of disability rights activists out there fighting like hell to lift up the disabled community. As with any civil rights movement, they are making progress slowly, laboriously, and with enormous sacrifice.
Yet there’s still a lot to do, as writer and disability rights activist Andrew Pulrang explains: “… we ourselves have work to do to extend the ADA’s protections and meaning to the whole complicated and diverse disability community … including disabled people of color, disabled LGBTQ people, disabled women, and people with hearing, vision, mental, learning, and intellectual and developmental disabilities.”
My relationship with my deaf aunt changed dramatically when texting became widely accessible and affordable. Before, we could only have a conversation if we were in the same room, facing each other so she could read my lips… which didn’t happen often because I grew up several states away from her. Now we chat all the time!
This everyday tech most of us take for granted has been a life-changing communications improvement for disabled people. And as often as we shit on technocrats around here, I still firmly believe that technological advances have the potential to make the world more accessible and welcoming to people with all kinds of disabilities.
But again: it ain’t gonna happen without our loud and fervent activism.
I now turn the microphone over to you, beloved readers. Let’s make the comments section a place to share information on how to navigate the ADA, disability benefits, and accessibility woes. Or if you just want to vent…
Thanks for joining us in celebrating Disability Pride Month! If you appreciated the research and coverage we did on the intersection of disability and finance this month, you have our Patreon donors to thank. Every month they vote on article topics and support us with donations to keep our mission going. Join them by clicking the button below!
*While these quotes from BGR followers are real, the names are not. We’ve never had a disabled Disney Princess and I think that needs to change.
Thanks for this post. I just started researching disability benefits for my spouse. Unfortunately he mostly freelanced and doesn’t qualify for SSDI. I looked into SSI and was shocked by the $2,000 asset limit. I thought that surely I just haven’t found the right agency. “Good” to know that my research is correct and I actually can stop wasting time searching for a government program that helps disabled adults.
I completely relate to the “this cannot be right” feeling. It’s fucking SHOCKING. Good luck seeking help for your spouse, my dear. We’re rooting for you despite the odds!
If he did things “right” and paid into the system, instead of doing a LLC and getting paid from there, maybe it’d work? If he made enough? I’m sorry, I wish your spouse qualified.
As of 2024, the ABLE Act limits eligibility to individuals with disabilities with an age of onset of disability before turning 26 years of age.
Oh good. That’s just great. That’s fucking fantastic.
They’re gradually changing it to 46, IIRC
Yep. Good luck proving at 40+ that your disability started before your 26th birthday.
Although at least starting 1/1/2026 that will rise to “before the age of 46”. I don’t see why they need the age limit at all….
So ABLE is one of the few programs you don’t actually have to prove first. They don’t require you to give age disability proof when you apply, you just need to have it and they can request it at any time. (This is what I found out when I looked into it.)
Also! You don’t have to get it in your state! You can get an ABLE account in any state that does it that you can get a bank account in. Different states have different fees and stuff for the accounts (some radically more expensive than others) so do the research and go with a bank in a state that has the lowest fees.
If you are in the US and Canada, you can dial 211 to get connected to information on local non profits to help with a wide variety of things (food, housing, low cost legal assistance)
Mileage may vary depending on where you are and funding levels, but it may be able to point you in the right direction or connect you to information you didn’t know or couldn’t easily Google.
Thank you bitches for this amazing (yet disheartening) series. I’m a disabled adult who is (still) working. I earn more than my spouse atm, and it is difficult to imagine what we will do if/when I can’t work anymore. We’re doing our best to sock away money, though with two kids, a new home*, and my rising medical and other disability-associated expenses (increased childcare costs, housekeeping, etc), it is getting really hard to have a positive cashflow month-to-month, even with our dual income. I’ve been eyeing FI for years now as a goal, knowing that I may be forced to “retire” early – whether I’d like to or not. I would not ever qualify for SSI due to asset limits. I’m hoping against hope that my LTD insurance will provide some income replacement – although based on your series I recognize that is far less likely than I would like to believe.
* we moved a couple of years ago to an incredibly supportive community neighborhood, which is in and of itself a better safety net than i could possibly wish for; but fuck it’s expensive.
One specific comment I would add here is that the ADA is notoriously only enforceable in litigation. Personally, I’m facing serious employment discrimination in the form of lack of reasonable accommodations + a fun dose of retaliation to boot. As I’ve discovered in the last 2.5 years, the only way I can get my legally-protected rights under the ADA is to go the legal route (EEOC charge, and eventually a lawsuit bc the EEOC is likewise significantly underfunded and can’t truly investigate discrimination cases). I was lucky enough to find a lawyer who is willing to work on contingency, but it took a lot of digging; and it may be years before I get any resolution, of which (if there’s any monetary compensation) 40% will go to my lawyer. Meanwhile – the war of attrition with my employer is deteriorating my physical and mental health condition far worse than it’s ever been to date. A Twitter mutual of mine has the same results to a similar case. It costs the employers nothing to discriminate against us , but is costing us everything. In other words: getting the ADA to work, similarly to your description of SSDI/SSI, is likewise dehumanizing and incredibly painful and costly.
I’ve done some benefits advocacy work with SSDI and SSI and yeah, it’s pretty bad, but some things have gotten better:
If you own a home and live in it, the value of the home doesn’t count against SSI while you’re living there. It can cause problems if you move into assisted living or something like that, and they might be able to put a lien against it? But you won’t get denied or kicked off SSI over it.
The SSI vehicle thing is weird. The general understanding is that you can have one car per “household” regardless of its value but if you have two cars it’s a big problem unless it falls into specific exceptions (the one I’m most familiar with has to do with vehicles that are modified to accommodate specific disabilities). How SSI defines “household” gets really freaking arbitrary after a while though.
In some states (I live in NY, which is one of them) being on SSI confers “categorical eligibility” for other benefits, including Medicaid and SNAP. And in theory also Section 8 housing but yeah good luck there. Also, while it’s often a problem if you’re working when you first try to get on SSDI or SSI, once you’re on it, the cash benefit is gradually phased out after you make a certain monthly income and as long as you’re getting ANY SSI, you keep the additional benefits.
There is a resource called How to Get On: https://howtogeton.wordpress.com – it goes over a lot of scenarios for getting and keeping disability-related benefits, and was very helpful for a friend of mine struggling with the application process. I’d also suggest reaching out to your local Center for Independent Living, which does free “information and referral” and advocacy services and can point you to resources specific to where you live.
If you have a mental illness (or substance abuse issues, possibly medical issues) and you’re either homeless or at risk of homelessness (and that “at risk” is a broad category… me living with a housemate that wasn’t charging me the full half the rent & utilities & having family help with rent counted) (and the other standard disability stuff), you are eligible for the SOAR program (SSI/SSDI Outreach, Access, and Recovery (SOAR) program) for getting on disability. In short, they assign you a special SOAR process certified social worker who interviews you extensively, writes up a special comprehensive document about your disabilities & why you should be on SSI/SSDI, has your doctor sign off on it and sends it to the SSA (with other documentation) and they FAST TRACK it. You get a response within 2-3 months (mine took 6 weeks) AND people who’ve been through the SOAR process have a 65% success rate! That’s not a typo. SIXTY-FIVE PERCENT!
My guess is they don’t publicize this program because they don’t have enough SOAR certified workers to cover all the people eligible for it. But now you know it exists! Do some research on SOAR and your state to find the SOAR coordinator and/or SOAR worker in your area.
Here’s more on the SOAR program, made for social workers. As far as I know, there is NOT a SOAR site for the public. https://soarworks.samhsa.gov/
Here’s another site mentioning it
https://endhomelessness.org/blog/soar-is-designed-to-increase-access-to-ssi-ssdi-income-supports/
But, yeah, go do the SOAR process! I went from being rejected the first time (“disabled but still can do some jobs” according to them) to being on SSDI in 5 months total.
Really appreciate the chance to weigh in on this and hopefully help some people to find Help Hope Live if they are caught in these holes in the barely-there “safety net.” We always say the same thing about our nonprofit: we shouldn’t exist, but we have to.